European Autism Action Conference Final Implementation Report

Th is Repor t ar ises f rom t he p r o ject Europ ean Aut ism Act ion

2020: Wor king Con f er ence on a European St rat egic Plan f or

Aut ism , Dub lin 2010 – EAAC, w h ich has r eceived f und ing

f rom t he Eur opean Un ion , in t he f r am ew ork of t he Pub lic

Healt h Progr am m e

Table of Contents Detailed description of activities conducted ........................................................................................ 1 Manpower for the execution of the activities ....................................................................................... 3

Other partners involved ..................................................................................................................... 4

Countries involved ............................................................................................................................. 4 Achievement of the objectives ........................................................................................................... 5 Financial Report ................................................................................................................................ 6 Appendix 1: Conference brochure and folder ................................................................................... 20 Appendix 2: Online consultation questionnaire ................................................................................. 21

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Detailed description of activities conducted This project, the European Autism Action 2020: Working Conference on a European Strategic Plan for Autism, Dublin 2010, undertook to consult with autism spectrum disorders (ASD) stakeholders across Europe on issues around ASD public health – the aim of this consultation was to develop a strategic public health plan for ASD in Europe for the next ten years in accordance with the general objective of the action. This 10-year plan has been called ‘European Autism Action 2020’ (EAA2020). The Conference itself took place in Dublin on 29 November 2010 and the results of the consultation process and the EAA2020 plan were presented at the event. To start the process, Irish Autism Action (IAA) financed a number of activities before the grant agreement for the Conference project was signed in July 2010: making contact with potential speakers and delegates, beginning to develop the branding and marketing strategy and the Conference website. IAA staff prepared for the 3

rd Panel of Experts on ASD meeting in conjunction

with DG-SANCO, which was an important preliminary activity to the Conference process. The Conference was also disseminated through a visit by Dr Alvaro Ramirez, conference coordinator, to the International Meeting for Autism Research (IMFAR) in the USA. DG-SANCO hosted the 3

rd Panel of Experts on ASD Meeting, in Luxembourg on 11

th & 12

th March

2010. This replaced the planned first meeting of the scientific committee and surpassed expectations due to the number of experts, 29 in total, who attended the meeting and pooled their knowledge and experience to begin the consultation process. At this meeting the state-of–the–art of ASD research, epidemiology, evidence-based services and advocacy were presented to the Panel and following discussion and plenary sessions, the methodology for the sub-regional meetings and an outline of the guidelines to be used were established. A comprehensive report (Annex 1 of the Conference Report) of the meeting was written and distributed to all those invited to the sub-regional meetings to help them prepare for the event. Contacts were made through the network developed by the European Autism Information System (EAIS) and the European Network of Surveillance on risk factors in Autism and Cerebral Palsy (ENSACP) projects as well as those recommended by the Panel of Experts and others in the network, so that invitations were sent to professionals, representatives of parents’ organisations and members of the European High Level Committee on Public Health to the sub-regional meetings and the Conference in Dublin. This was to fulfil the first specific objective: to create, mobilise and facilitate representative sub-regional consultative groups of experts and stakeholders to discuss and finalise the terms of reference of the EAA2020 strategic plan. A publicity campaign and a media plan for the Conference were drawn up with MCI Dublin, who are experienced conference and event organisers. This included regular targeted e-mailing to a database of over 750 ASD stakeholders in Europe as well as sales calls. The use of MCI in the project was to benefit from their marketing experience and to disseminate the information on the European Autism Action strategic plan, linking in with the general objective of developing this plan. The conference website www.autism2010.eu was designed and created by IAA staff and was launched with a mass e-mail. A branding profile was created for the conference then a conference brochure and folder were also developed and these are presented in Appendix 1 of this Report. The brochure was disseminated by e-mail and hard copies were distributed at the sub-regional meetings and at the Conference, as well as at other important conferences such as IMFAR in the USA in May and at the Autism Europe Congress in October. This all contributed to the EU priority action to generate and disseminate health information and knowledge, through the existence of this network sharing information on the issues around autism and public health. The sub-regional meetings were organised together with colleagues from autism organisations in Budapest and Palma de Mallorca who helped with all the local arrangements. Speakers and delegates were invited and, once confirmed, travel arrangements were made for all the invited experts and country representatives. Working papers for the sub-regional meetings were finalised in consultation with the Scientific Committee and distributed to the delegates in advance of the meetings.

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A meeting of the Scientific Committee took place on 1st September in London to finalise the

arrangements for the sub-regional meetings and for the Dublin Conference in terms of final details of the programmes, speakers and themes for breakout sessions. The two sub-regional meetings were held during September 2010. The East European sub-regional meeting was held on 13

th & 14

th September 2010 in Budapest, Hungary. A total of 17 countries were

represented by 41 delegates. The West European sub-regional meeting was held on 23rd and 24th September 2010 in Palma de Mallorca, Spain. A total of 18 countries were represented by 59 delegates. The names of delegates who were present, as well as detailed findings from the meetings, can be found in the Conference Report; brief reports and the programmes from both these meetings may be found in Annex 2 of that document. In order to reach out to as many ASD stakeholders as possible, it was decided to include an online survey in the consultation process; this had not been envisaged in the project proposal but it became clear after discussions at the Panel of Experts meeting that a forum where all stakeholders could participate in the EAA2020 strategic plan would be beneficial to the process. A survey was drawn up and put on the conference website (see Appendix 2) and was promoted at the sub-regional meetings where delegates were encouraged to promote the survey among their members. The survey was translated into 18 languages from the original in English by delegates or their colleagues who volunteered their services. In total 229 responses were received but unfortunately the conference staff did not have the capacity for standardising responses and translating back to English for analysis in the short time available before presenting the results of the whole consultation process at the Conference in November and so a random sample of 30 responses, received in English from several different countries, was taken and included in the findings from the series of meetings, which can be found in the Conference Report (p.12-24) The European Autism Action Conference took place at the Grand Hotel, Malahide, Dublin, on 29

th

November 2010 with 138 delegates from 15 different European countries. This event was the culmination of the intensive consultation process that took place over the period from September to November 2010, comprising two sub-regional consultative meetings at which 35 European countries were represented by professionals and stakeholders in the field of autism spectrum disorders (ASD) and an online consultation which gave the opportunity for a variety of stakeholders to participate in the process. The Programme and a detailed report of the Conference itself can be found in Annex 2 of the Conference Report. The Conference Report was drafted and distributed to all those who participated in the sub-regional meetings for their comments; a second draft was distributed once all the comments had been included and a final draft was then distributed and approved. There was a great deal of positive feedback from the sub-regional meetings and the Conference; the network of professionals, representatives of parents’ organisations and self advocates has been established; these people are willing and able to work together to implement the initiatives agreed for EAA2020 during the consultation process, including eminent experts who would be keen to form a scientific committee for its implementation over the next ten years. Clearly, there needs to be financial support for the EAA2020 initiative in order to set out meaningful terms of reference for members of such a committee as expressed in specific objective 2 of the action: to establish a Scientific Committee of Experts for consultation and guidance in the finalisation, implementation and follow-up of the EAA2020 strategic plan. A strategy document for the European Autism Public Health Alliance (eapha) was developed and can be read in Annex 3 of the Conference Report. This is linked to the third specific objective: to progress the establishment of the European Autism Public Health Alliance and consolidate and expand its role as a forum to share, coordinate and disseminate knowledge and information on ASD across the EU and to act as a vehicle for EAA2020. Through the Conference and its related processes, eapha has gained the trust of stakeholders, created a network of stakeholders and has disseminated a wealth of knowledge and information on ASD through the activities described; the mass distribution of the Conference Report, once approved by the EAHC, will continue and reinforce this spread of knowledge.

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Manpower for the execution of the activities

Name Person days of work

Category Cost per day Total cost

Alvaro Ramirez 61.5 Coordinator 315 19372.50

Kevin Whelan 42 Manager 370 15540

Patricia Garcia 45 Project Officer 180 8100

Abigail O’Donovan 63 Project Officer 150 9450

Anna McElhinney 90 Administrator 135 12150

Aisling Garry 55.5 Administrator 150 8325

Total 72937.50

The activities conducted by each person are described below:

Alvaro Ramirez was the overall coordinator of the conference and its related processes. He supervised all aspects of the staff’s activities and the financial aspects of the project. He convened the Scientific Committee and devised the list of invitees for the Panel of Experts Meeting, two sub-regional meetings and the Dublin Conference together with Simon Wallace from Autism Speaks. He also devised the technical / methodological content of these meetings and developed their programmes. He contacted potential speakers and made arrangements with them for their talks and presentations. He participated in meetings together with Kevin Whelan and the conference organisers, MCI Dublin, to make all the necessary marketing and logistic arrangements for the Conference in Dublin. He disseminated the Conference and its related processes at international meetings such as IMFAR and the Autism Europe International Congress in 2010. He has been responsible for the analysis of information gathered in the consultation processes of the project and for writing the Conference report together with Simon Wallace and Sir Christopher Ball. Kevin Whelan, CEO of Irish Autism Action, worked extensively on the original branding and marketing strategy in coordination with MCI Dublin and on raising awareness about the conference particularly in the Irish and UK context. He forged contacts with Autism Speaks, which contributed financially to the project. He participated in both sub-regional meetings and played a very active role in inviting experts to the Dublin Conference and ensuring participation of all sectors of ASD stakeholders in Ireland and the UK, including parents organisations, health and education professionals and governments officials. He played an important role coordinating with the IAA financial officer and with the conference coordinator Alvaro Ramirez. He was the intermediary with Board of Directors of Irish Autism Action at every stage of this project from its inception to the final report. Patricia Garcia was the project officer who built the database of over 750 stakeholders, sending mass e-mails inviting and strongly encouraging participation in the online consultation process. She carried out the analysis of responses to the online consultation questionnaire which were included in the Conference Report. She also played an important role in the compilation of working documents for delegates and liaised with the sub-regional meeting venue and local parents’ organisation in Mallorca where the meeting was held. She supported the conference administrator with communication to speakers, invited experts and country representatives and worked closely with the other project officer on the online consultation process. Prior to the sub-regional meetings she requested all delegates’ bio-sketches, which were included in delegate packs, as well as country representatives’ presentations, which she managed at the meetings, ensuring smooth running of the proceedings. After the sub-regional meetings she gathered the information that had been noted and recorded during the small and large discussion groups, for synthesis into the findings section of the Conference Report. At this stage she compiled the Countries Report, which is a summary of each country presentation from the sub-regional meetings. Abigail O’Donovan was the project officer responsible for the dedicated conference website www.autism2010.eu, which she designed, developed and kept regularly updated with information about the Conference and its related processes. Abigail designed and developed the online consultation process and worked closely with Patricia on following up any queries, recruiting volunteer translators for the questionnaire and making it available on the website in 18 different European languages. She also managed a software programme for the analysis of the responses and liaised

4

with Patricia on this. She played an important role in keeping stakeholders from the database informed on updates to the website and general information about the conference and its related processes through mass e-mail blasts. New contacts were added to the database via an opt-in autoresponder system which was integrated into the website. Abigail also played a vital role in the development and implementation of the conference branding and the production of all printed materials such as the brochure, folder, name badges, programmes for each event, scholarship forms and the Conference Report. These were all produced according to a branding specification and Abigail ensured that all documentation followed the protocol in terms of presentation and formatting. Anna McElhinney was the conference project administrator and was the contact person for all the speakers, invited experts, country representatives and scholarship candidates throughout the process. She collated the contact details and sent invitation e-mails and relevant details and followed through by making travel arrangements and keeping delegates informed of all the logistic details they needed. She liaised with the meeting venues, travel companies, hotels and caterers for the sub-regional meetings and with the conference organisers MCI for the Conference in Dublin. She managed the invited experts and scholarship holders’ expenses forms at all the meetings which she then passed on to the finance officer. She also assisted the conference coordinator in compiling working papers for the meetings and the conference as well as in the production of the Conference Report and this document. Aisling Garry was the finance officer on this project, responsible for the day-to-day financial management of the expenses incurred and staff costs. She worked closely with the conference manager, coordinator and administrator in this role and ensured that all financial records were kept in the correct manner as well as compiling the financial report.

Other partners involved There were no other partners officially involved in this project but Autism Speaks collaborated and contributed towards the costs of the Conference. Autism Speaks’ Director of Scientific Development for Europe worked with the Irish Autism Action team to share contacts and he was also part of the Scientific Committee for this project.

Countries involved The 35 countries that participated in the sub-regional meetings are fully listed in the Conference Report (Annex 2). Delegates from 15 different countries attended the Conference in Dublin. All the organisation of the project was conducted by Irish Autism Action.

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Achievement of the objectives The general objective of the conference was to improve the quality of life of individuals affected by ASD in Europe through the development and implementation of the ‘EAA2020’ strategic plan, including establishing knowledge management and information systems on diagnosis, treatment, surveillance, prevalence and the causes of the disorders. As far as the scope of this project allowed, this general objective has been achieved in that the European Autism Action 2020 (EAA2020) strategic plan has been developed through consultation with stakeholders across Europe. The plan is described in the conclusions and recommendations section of the Conference Report. The implementation of this plan goes beyond the remit of this project but is the natural path to follow now that the investment has been made in establishing this plan. It is hoped that the 1996 official declaration by the European Parliament to fully support the rights of people with autism will be honoured and political and financial support to implement the EAA2020 strategic plan will be offered.

The specific objectives of the conference were:

1. To create, mobilise and facilitate representative sub-regional consultative groups of experts and stakeholders to discuss and finalise the terms of reference of the EAA2020 strategic plan; This objective was achieved in a very thorough manner through the organisation of three meetings: the Third Panel of Experts on ASD meeting and the two sub-regional meetings for Eastern and Western European countries as fully described in the Conference Report. These groups were comprised of experts of the highest calibre and a range of stakeholders including parents, representatives of parents’ groups, child psychologists and psychiatrists, social workers, teachers, public health officials, representatives of Autism Europe and government representatives from 35 different European countries.

2. To establish a Scientific Committee of Experts for consultation and guidance in the finalisation, implementation and follow-up of the EAA2020 strategic plan; A Scientific Committee of 12 experts was convened to guide the processes and reports from this project. It was agreed that detailed and specific terms of reference would be required in order to establish a Scientific Committee to guide the implementation and follow-up of the EAA2020 strategic plan; this will depend on what support is available to implement the plan. There is a large group of experts and stakeholders from which to draw any future committee and many people have indicated their desire to continue working with the EAA2020 strategy and the implementation of the plan

3. To progress the establishment of the European Autism Alliance and consolidate and expand its role as a forum to share, coordinate and disseminate knowledge and information on ASD across the EU and to act as a vehicle for EAA 2020. This objective was fulfilled as the European Autism Public Health Alliance (eapha) was formally incorporated in 2010. A strategy document for eapha was developed and can be read in Annex 3 of the Conference Report. Through the Conference and its related processes, eapha has gained the trust of stakeholders, created a network of stakeholders and has disseminated a wealth of knowledge and information on ASD through the activities of this project; the mass distribution of the Conference Report, once approved by the EAHC, will continue and reinforce this spread of knowledge. The role of eapha as a vehicle for the implementation of EAA2020 again depends on what financial support can be sourced to continue its work. The database of over 750 stakeholders that was developed as part of this project furthers the possibilities of disseminating knowledge and information on ASD and the work of eapha in the future and the online consultation process that was carried out can be further developed to consolidate the views of ASD stakeholders around Europe.

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Financial Report The total direct eligible costs for the action are €224,507, which is 14.6% less than the initial estimated budget. The total actual expenditure, compared to budget for each category, is detailed in the following paragraphs:

Staff Costs

Preparations for the Conference and its related processes started at the beginning of March 2010, although the grant agreement with EAHC only began in July 2010. The actual staff costs are higher than stated in the budget by 32.8%. There was a much higher than expected volume of work involved in the project than had been envisaged and this work was intensified due to the delay in starting the project, into six months work instead of twelve months as had been envisaged. The reduced lead time to the sub-regional meetings and conference itself meant that more time had to be spent putting marketing strategy into place, following up invitations and queries and organising travel arrangements as well as coordination with venues and conference organisers. Following the two sub-regional meetings in September, the month of October was spent collating the information from the online consultation process and the meetings in order to produce the findings from the whole consultation process. The volume of information was higher than had been expected, as reflected in the Conference Report and Countries Report. At the same time preparations for the Conference in November were being made, invitations followed up and travel arrangements for speakers and delegates were made, working papers produced and coordination meetings took place with MCI to ensure that all logistical arrangements were in place. Unfortunately the weather was exceptionally cold at the time of the Conference and a lot of work was done to ensure as many people could travel to the Conference as possible – this involved looking at alternative travel arrangements for many delegates and speakers in the days leading up to the Conference. The month of December was spent working on the Conference Report.

Travel Costs and Subsistence Allowances

Travel Costs: The only additional cost not included in the original budget is Alvaro Ramirez dissemination trip to the Autism Europe IX International Congress in Catania. This extra travel cost was approved by Guy Dargent. The actual travel costs were €5,954 while the original travel cost figure was €8,000. Subsistence Allowances: Irish Autism Action’s daily rate policy for subsistence is €175. This daily rate is for subsistence, accommodation costs and local travel costs. This is the rate which was used excluding the Autism Europe International Congress, for which the standard allowance for Italy was used. The total cost for travel and subsistence was €16,444 which is 11% higher than the original budgeted cost. This is due to the dissemination trip as mentioned which was considered an important opportunity to meet with the most eminent ASD experts and many stakeholders to distribute information brochures on EAA2020 and talk to people about the Conference and its related processes and findings. The increase is also due to an error in the original budget, omitting the cost of travel and subsistence within Ireland for meetings essential to the organisation of the conference and its related processes.

Consumables

The total cost of consumables for the conference is €16,108, which is 7% more than the original cost. This is due to the purchase of memory sticks for Conference delegates so that all speakers’ presentations and relevant documents would be available to them at a lower cost and in a more environmentally sustainable manner than reproducing hard copies.

Subcontracting Costs

The total cost for subcontracting was €29,574, 2% lower than the budgeted amount.

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Other Costs

The total spend on this category was €89,442, 39.6% lower that the budgeted amount. This is mainly due to the reduced number of invited experts and country representatives at the Dublin Conference due to a poor response. The response to the sub-regional meetings was excellent and the full number of delegates expected attended the meetings. There was no cost for room hire at the sub-regional meeting in Palma de Mallorca as the local autism organisation have good links with the proprietors of the auditorium and this was offered free of charge. The daily allowance figure given for invited experts is for accommodation and local travel costs combined. Dinners were arranged at a central location which gave delegates excellent networking opportunities in the evenings. Due to the air traffic controllers strike in France, Dr Louise Gallagher was stranded at Gatwick Airport, UK, en route to Mallorca and could not attend the meeting. Her flight and accommodation was already paid for and no refund was available. Professor Ann Le Couteur cancelled her trip to Dublin as she was unable to leave her home in the UK because of heavy snow. As this was known a few days previous to the event, most of the expenses were recouped but there was a non-refundable portion of the flight. Due to the weather conditions during the Dublin Conference, Professor Rutger Jan van der Gaag did not attend because of an important commitment he had the day after the Conference in the Netherlands and his strong concerns about being able to return from Dublin. There was no accommodation or subsistence cost incurred but as he had already checked in for the flight when he decided to turn back, there was no reimbursement for this. The cost of registration for the Autism Europe Congress is included in this section, though it was not budgeted for, it was approved by EAHC. Details of the project expenditure are on the following pages and the attached Excel file.

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Acronym of beneficiary

organisation

Country

code Function Name

No. of

person days Daily Cost Cost (€)

IAA IE

Conference coordinator Alvaro Ramirez 61.5 315 19372.50

IAA IE

Conference Administrator Anna McElhinney 90 135 12150.00

IAA IE

IAA-CEO Coordinator Kevin Whelan 42 370 15540.00

IAA IE IT Administrator Abigail O'Donovan 63 150 9450.00

IAA IE Admin Assistant Aisling Garry 55.5 150 8325.00

IAA IE Technical Assistant Patricia Garcia Primo 45 180 8100.00

Staff sub-total 72937.50

Acronym of beneficiary

organisation

Country

code

Name of person

travelling Purpose and dates of travel

Means of

transport

Place of Departure (City,

Country)

Destination

(City, Country) Cost (€)

IAA IE Kevin Whelan 1st Sub-Regional Meeting Air Dublin, IE Budapest, HU 491.00

IAA IE Alvaro Ramirez 1st Sub-Regional Meeting Air Dublin, IE Budapest, HU 202.00

IAA IE Anna McElhinney 1st Sub-Regional Meeting Air Dublin, IE Budapest, HU 202.00

IAA IE Abigail O'Donovan 1st Sub-Regional Meeting Air Dublin, IE Budapest, HU 194.00

IAA IE Patricia Primo 1st Sub-Regional Meeting Air Madrid, ES Budapest, HU 428.00

IAA IE Kevin Whelan 2nd Sub-Regional Meeting Air Dublin, IE Palma, ES 341.50

IAA IE Alvaro Ramirez 2nd Sub-Regional Meeting Air Dublin, IE Palma, ES 222.00

IAA IE Anna McElhinney 2nd Sub-Regional Meeting Air Dublin, IE Palma, ES 222.00

IAA IE Abigail O'Donovan 2nd Sub-Regional Meeting Air Dublin, IE Palma, ES 222.00 IAA IE Patricia Primo 2nd Sub-Regional Meeting Air Madrid, ES Palma, ES 211.00

IAA IE Patricia Primo Dublin Conference Air Madrid, ES Dublin, IE 261.51

IAA IE Alvaro Ramirez London Meeting Air Shannon, IE London, UK 207.00

IAA IE Alvaro Ramirez

Autism Europe IX Internation al Congress, Catania Air Dublin, IE Catania,IT 435.00

IAA IE Abigail O'Donovan Scientific Committee meeting London Air Shannon, IE London, UK 464.00

IAA IE Patricia Primo Outcome of meetings for report Air Madrid, ES Shannon, IE 432.00

IAA IE Alvaro Ramirez 4 meetings in Dublin with IAA Board of Directors Car

Ogonnelloe, Co Clare, IE Dublin, IE 503.44

IAA IE Alvaro Ramirez

5 meetings in Dublin with MCI on branding & marketing Car

Ogonnelloe, Co Clare, IE Dublin, IE 629.30

9

IAA IE Alvaro Ramirez 3 meetings in Mullingar with IAA CEO Car Ogonnelloe, Co Clare, IE Mullingar, IE 286.44

Sub-total Travel 5954.19

Acronym of beneficiary

organisation Country

code Name of person

travelling Purpose and dates of travel

Destination

(City, Country) Number of days Daily Allowance Cost (€)

IAA IE Kevin Whelan 1st Sub-Regional Meeting

Budapest,

HU 3 175 525.00

IAA IE Alvaro Ramirez 1st Sub-Regional Meeting

Budapest,

HU 3 175 525.00

IAA IE Anna McElhinney 1st Sub-Regional Meeting

Budapest, HU 3 175 525.00

IAA IE Abigail O'Donovan 1st Sub-Regional Meeting

Budapest, HU 3 175 525.00

IAA IE Patricia Primo 1st Sub-Regional Meeting

Budapest,

HU 3 175 525.00

IAA IE Kevin Whelan 2nd Sub-Regional Meeting Palma, ES 3 175 525.00

IAA IE Alvaro Ramirez 2nd Sub-Regional Meeting Palma, ES 3 175 525.00

IAA IE Anna McElhinney 2nd Sub-Regional Meeting Palma, ES 3 175 525.00

IAA IE Abigail O'Donovan 2nd Sub-Regional Meeting Palma, ES 3 175 525.00

IAA IE Patricia Primo 2nd Sub-Regional Meeting Palma, ES 3 175 525.00

IAA IE Kevin Whelan Dublin Conference Dublin, IE 2 175 350.00

IAA IE Alvaro Ramirez Dublin Conference Dublin, IE 2 175 350.00

IAA IE Anna McElhinney Dublin Conference Dublin, IE 2 175 350.00

IAA IE Abigail O'Donovan Dublin Conference Dublin, IE 2 175 350.00

IAA IE Patricia Primo Dublin Conference Dublin, IE 2 175 350.00

IAA IE Aisling Garry Dublin Conference Dublin, IE 2 175 350.00

IAA IE Alvaro Ramirez London Meeting London, UK 2 175 350.00

IAA IE Alvaro Ramirez Autism Europe IX International Congress Catania, IT 3 230 690.00

IAA IE Alvaro Ramirez 4 meetings in Dublin with IAA Board of Directors Dublin, IE 4 175 700.00

IAA IE Alvaro Ramirez

5 meetings in Dublin with MCI on branding &

marketing Dublin, IE 5 175 875.00

IAA IE Alvaro Ramirez 3 meetings in Mullingar with IAA CEO

Mullingar, IE 3 175 525.00

Sub-total Subsistence 10490.00

Sub-total Travel and Subsistence 16444.19

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Acronym of beneficiary

organisation

Country

code Name of supplier Consumables:Description of items

Purchase

price (€)

IAA IE MCI Brand Development 12100.00

IAA IE P Martin Conference Printing, Design & Artwork 1258.40

IAA IE P Martin Conference Badges & Certificates Printing, Design & Artwork 363.00

IAA IE Viking Memory Sticks 2139.35

IAA IE P Martin Conference Stationary & Complimentary Slips Printing, Design & Artwork 248.05

Sub-total Consumables 16108.80

Acronym of beneficiary

organisation

Country

code Name of supplier Subcontracting: Description of items

Purchase

price (€)

IAA IE C Ball Sir C Ball, Chair of Sub regional meetings & conference 9175.00

IAA IE

Marriott Hotel Budapest 1st Sub-Regional Meeting, Budapest, Room Hire & Catering 8815.41

IAA IE Maykatours 2nd Sub-Regional Meeting, Palma, Catering 3319.00

IAA IE MCI Ovation Dublin Conference: Room Hire & Catering 8265.40

Sub-total Subcontracting 29574.81

Acronym of beneficiary organisation

Country code Name of supplier Other costs: Description of items

Purchase price (€)

29 invited experts and country representatives for Budapest Conference

IAA IE Varna-Budapest A Apostolov 627.00

IAA IE Allowance A Apostolov 180.00

IAA IE Chisnau-Budapest- T Valica 775.00

IAA IE Allowance T Valica 154.00

IAA IE Varna-Budapest I Dudrenova 635.00

IAA IE Allowance I Dudrenova 168.00

IAA IE Tirana-Budapest E Vaikiari 418.00

IAA IE Allowance E Vaikiari 154.00

IAA IE Tirana-Budapest A Suli 458.00

IAA IE Allowance A Suli 154.00

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IAA IE Tirana-Budapest L Penko 458.00

IAA IE Allowance L Penko 241.00

IAA IE London-Budapest Sir C Ball 554.00

IAA IE Allowance Sir C Ball 196.00

IAA IE Bucharest-Budapest D Petrovai 575.00

IAA IE Allowance D Petrovai 154.00

IAA IE Skopje-Budapest Prof V Trajkovski 398.00

IAA IE Allowance Prof V Trajkovski 222.00

IAA IE Zagreb-Budapest G Alijinovic 550.00

IAA IE Allowance G Alijinovic 130.00

IAA IE Warsaw-Budapest A Rymsza 561.00

IAA IE Allowance A Rymsza 172.00

IAA IE Warsaw-Budapest I Chojnicka 561.00

IAA IE Allowance I Chojnicka 166.00

IAA IE Larnaca-Budapest P Bolton 523.00

IAA IE Allowance P Bolton 130.00

IAA IE Llubljana-Budapest M Macedoni-Luksic 712.00

IAA IE Allowance M Macedoni-Luksic 154.00

IAA IE Athens-Budapest Dr F Kostas 445.00

IAA IE Allowance Dr F Kostas 188.00

IAA IE Vilnius-Budapest E Ducinskiene 698.00

IAA IE Allowance E Ducinskiene 185.00

IAA IE Kiev-Budapest I Martsenkovsky 628.00

IAA IE Allowance I Martsenkovsky 155.00

IAA IE Talinn-Budapest M Rander 514.00

IAA IE Allowance M Rander 180.00

IAA IE Talinn-Budapest P Visnapuu 514.00

IAA IE Allowance P Visnapuu 180.00

IAA IE Warsaw-Budapest R Lukjansk 798.00

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IAA IE Allowance R Lukjansk 180.00

IAA IE Warsaw-Budapest A Skrebelis 798.00

IAA IE Allowance A Skrebelis 180.00

IAA IE Prague-Budapest M Jelinkova 637.00

IAA IE Allowance M Jelinkova 204.00

IAA IE Llubljena-Budapest E Simikic 605.00

IAA IE Allowance E Simikic 180.00

IAA IE Sarajevo-Budapest S Zecic 779.00

IAA IE Allowance S Zecic 225.00

IAA IE Sarajevo-Budapest K Sabo-Mehic 779.00

IAA IE Allowance K Sabo-Mehic 190.00

IAA IE Allowance M Stubna 51.50

IAA IE Allowance G Aljinovic 60.00

IAA IE Allowance Z Szilvasy 207.72

45 invited experts and country representatives for Palma Conference

IAA IE Luton-Palma A Persico 422.00

IAA IE Allowance A Persico 243.00

IAA IE Brussels-Palma A Baranger 417.00

IAA IE Allowance A Baranger 313.00

IAA IE Malta-Palma R Micallef 373.00

IAA IE Allowance R Micallef 198.00

IAA IE Malta-Palma D Mercieca 373.00

IAA IE Allowance D Mercieca 238.00

IAA IE Dublin-Palma L Gallagher 425.00

IAA IE Allowance L Gallagher 198.00

IAA IE Madrid-Palma JL Gomez 456.00

IAA IE Allowance JL Gomez 394.45

IAA IE Edinburgh-Palma J Taylor 578.00

13

IAA IE Allowance J Taylor 260.79

IAA IE Bologna-Palma D Cerati 743.00

IAA IE Allowance D Cerati 228.00

IAA IE Frankfurt-Palma F Poustka 526.00

IAA IE Allowance F Poustka 198.00

IAA IE Amsterdam-Palma MV de Jong 478.00

IAA IE Allowance MV de Jong 198.00

IAA IE Dublin-Palma B Murnane 415.00

IAA IE Allowance B Murnane 99.00

IAA IE Dublin-Palma A Staines 415.00

IAA IE Allowance A Staines 198.00

IAA IE Helsinki-Palma E Hagman 779.00

IAA IE Allowance E Hagman 253.00

IAA IE Copenhagen-Palma M Lucklow 491.00

IAA IE Allowance M Lucklow 339.25

IAA IE Luxembourg-Palma S Glesener 461.00

IAA IE Allowance S Glesener 351.00

IAA IE Budapest-Palma Z Szilvasy 622.00

IAA IE Allowance Z Szilvasy 198.00

IAA IE Linz-Palma AM Dirmhirn 577.00

IAA IE Allowance AM Dirmhirn 256.10

IAA IE Amsterdam-Palma F Steklenburg 495.00

IAA IE Allowance F Steklenburg 282.70

IAA IE Vienna-Palma T Zottl 505.00

IAA IE Allowance T Zottl 222.85

IAA IE Copenhage-Palma M Carlsson 491.00

IAA IE Allowance M Carlsson 198.00

IAA IE Paris-Palma A Churlet 558.00

IAA IE Allowance A Churlet 99.00

14

IAA IE Paris-Palma M Sajidi 558.00

IAA IE Allowance M Sajidi 198.00

IAA IE Toulouse-Palma B Roge 1195.00

IAA IE Allowance B Roge 296.70

IAA IE Helsinki-Palma A Kyllianien 806.00

IAA IE Allowance A Kyllianien 348.00

IAA IE Zurich-Palma T vd Stad 469.00

IAA IE Allowance T vd Stad 198.00

IAA IE Lisbon-Palma I Telmo 287.00

IAA IE Allowance I Telmo 229.00

IAA IE Madrid-Palma M Poseda 335.00

IAA IE Allowance M Poseda 276.00

IAA IE Frankfurt-Palma C Freitag 519.00

IAA IE Allowance C Freitag 147.25

IAA IE Madrid-Palma R Bedia 335.00

IAA IE Allowance R Bedia 130.00

IAA IE Stockholm-Palma H Sturm 522.00

IAA IE Allowance H Sturm 258.00

IAA IE Lisbon-Palma P Levy 287.00

IAA IE Allowance P Levy 228.00

IAA IE Madrid-Palma M Parellada 478.00

IAA IE Allowance M Parellada 283.00

IAA IE Reykjavick-Palma J Ingolfsson 1469.00

IAA IE Allowance J Ingolfsson 198.00

IAA IE Reykjavick-Palma E Saemundsen 1414.00

IAA IE Allowance E Saemundsen 198.00

IAA IE Madrid-Palma R Canal 335.00

IAA IE Allowance R Canal 210.00

IAA IE Luton-Palma Sir C Ball 498.00

15

IAA IE Allowance Sir C Ball 303.00

IAA IE Dublin-Palma R Niemeyer 635.00

IAA IE Allowance R Niemeyer 297.00

IAA IE Oulo-Palma M Kielinen 847.00

IAA IE Allowance M Kielinen 292.25

IAA IE

SanSeb-Bilboa-Palma J Feuntes 673.00

IAA IE Allowance J Feuntes 256.64

IAA IE Arlanda-Palma A Calissendorff 519.00

IAA IE Allowance A Calissendorff 198.00

IAA IE Oslo-Palma G Iversen 628.14

IAA IE Allowance G Iversen 342.33

IAA IE London-Palma J Parr 342.65

IAA IE Allowance J Parr 192.00

IAA IE

Lyon-Barcelona-Palma E Willaye 489.73

IAA IE Allowance E Willaye 233.25

22 invited experts and country representatives for Dublin Conference

IAA IE London-Dublin P Tommey 393.00

IAA IE Allowance P Tommey 139.00

IAA IE Budapest-Dublin C Szauer 371.00

IAA IE Allowance C Szauer 139.00

IAA IE Madrid-Dublin M de la Paz 420.00

IAA IE Allowance M de la Paz 139.00

IAA IE Madrid-Dublin M Roldan 385.00

IAA IE Allowance M Roldan 139.00

IAA IE London-Dublin J Taylor 354.00

IAA IE Allowance J Taylor 139.00

IAA IE Toulouse-Dublin B Roge 618.00

16

IAA IE Allowance B Roge 139.00

IAA IE Madrid-Dublin R Bedia 385.00

IAA IE Allowance R Bedia 179.00

IAA IE Budapest-Dublin Z Szilvasy 371.00

IAA IE Allowance Z Szilvasy 179.00

IAA IE Bristol-Dublin R Mills 438.61

IAA IE Allowance R Mills 139.00

IAA IE Amsterdam-Dublin R vd Gaag 496.77

IAA IE London-Dublin Sir C Ball 379.24

IAA IE Allowance Sir C Ball 408.00

IAA IE Birmingham-Dublin K Guldberg 416.98

IAA IE Allowance K Guldberg 273.98

IAA IE Birmingham-Dublin K Wittenmeyer 434.70

IAA IE Allowance K Wittenmeyer 179.00

IAA IE Cardiff-Dublin D McGonigle 279.26

IAA IE Allowance D McGonigle 139.00

IAA IE Venice-Dublin M Istininc 518.01

IAA IE Allowance M Istininc 86.39

IAA IE Edinburgh-Dublin A LeCouteur 278.25

IAA IE Palma-Dublin I Alonso 466.64

IAA IE Allowance I Alonso 139.00

IAA IE Vilnius-Dublin O Davidoniene 698.55

IAA IE Allowance O Davidoniene 278.00

IAA IE Madrid-Dublin M Posada 363.00

IAA IE Allowance M Posada 214.00

IAA IE Treviso-Dublin M Istininc 374.00

IAA IE Allowance M Istininc 139.00

IAA IE Allowance E Karemi 202.00

IAA IE Allowance K Sinnott 156.45

17

IAA IE 13 scholarship places for Dublin conference

IAA IE Nis-Dublin M Stankovic 647.00

IAA IE Allowance M Stankovic 338.85

IAA IE Cluj-Dublin A Pop 869.00

IAA IE Allowance A Pop 139.00

IAA IE Reykjavik-Dublin M Sigurjonsdottir 1339.00

IAA IE Allowance M Sigurjonsdottir 139.00

IAA IE Warsaw-Dublin I Chojnicka 378.61

IAA IE Allowance I Chojnicka 139.00

IAA IE Brussels-Dublin G Petri 269.98

IAA IE Allowance G Petri 139.00

IAA IE London-Dublin S Budisavljevic 234.55

IAA IE Allowance S Budisavljevic 139.00

IAA IE Vilnius-Dublin E Butaite 634.80

IAA IE Allowance E Butaite 139.00

IAA IE Cluj-Dublin A Raluca 847.00

IAA IE Allowance A Raluca 179.00

IAA IE

Oviedo-Madrid-Dublin A Paredes 896.40

IAA IE Allowance A Paredes 139.00

IAA IE Madrid-Dublin M Merino 278.00

IAA IE Allowance M Merino 179.00

IAA IE Warsaw-Dublin A Rymsza 339.61

IAA IE Allowance A Rymsza 179.00

IAA IE Madrid-Dublin L Munoz 396.16

IAA IE Allowance L Munoz 139.00

IAA IE Madrid-Dublin S Budisavljevic 278.00

IAA IE Allowance C Garcia 226.82

18

IAA IE Dublin-London G Loughlin, Scientific Committee Meeting 544.89

IAA IE Allowance G Loughlin, Scientific Committee Meeting 147.00

IAA IE Budapest-London Z Szilvasy, Scientific Committee Meeting 657.00

IAA IE Allowance Z Szilvasy, Scientific Committee Meeting 158.00

IAA IE Autism Europe Autism Europe IX International Congress Registration Fee 460.00

IAA IE Comm Clinic Photographer, Dublin Conference 526.35

IAA IE

Marriot Hotel Budapest Group dinner 12 September, Budapest 998.59

IAA IE Rosinante Fogado Group Dinners, 13 September Budapest 889.38

IAA IE Honi Busz Kft. Bus Hire to group dinner venue, Budapest 163.00

IAA IE Maykatours Group Dinner, 22 September, Palma 1100.00

IAA IE Maykatours Group Dinner, 23 September, Palma 2630.00

IAA IE MCI Ovation Marketing strategy and registration system for Dublin Conference 5296.82

Sub-total Other Costs 89441.94

19

Global Expenditure and Income Expenditures

Direct Eligible Costs

Staff 72,937.50

Travel Cost & Subsistence 16,444.19

Equipment 0.00

Consumables 16,108.80

Subcontracting Costs 29,574.81

Other Costs 89,441.94

Total Direct Eligible Costs 224,507.24 Indirect Eligible Costs

Overheads 15,715.51

Total Indirect Eligible Costs 15,715.51 Total Expenditures 240,222.75

Incomes

Commission Funding 85,351.14

Applicants Financial Contribution 141,866.63

Income Generated by the Project 5,780.00

Other External Resources* 7,224.98

240,222.75

Total Incomes

*equivalent to USD 10,000.00

contribution from Autism Speaks

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Appendix 1: Conference brochure and folder Examples of the Conference brochure and folder are enclosed with this document .

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Appendix 2: Online consultation questionnaire 1. Your name and title 2. Address 3. Email address 4. Phone number 5. Profile:

Self-advocate Parent Relative of a person with ASD Carer of a person with ASD General practitioner Child or adolescent psychiatrist Psychiatrist Psychologist Social worker Speech therapist Teacher Student Other (please specify)

6. Your organisation (if applicable) 7. Address of organisation (if applicable) 8. Phone number of organisation (if applicable) 9. Email address of organisation (if applicable) 10. Please list what you consider to be three strengths in autism research within your country/region? 11. Please list what you consider to be three needs in autism research within your country/region? 12. Please list what you consider to be three strengths in autism services within your country/region? 13. Please list what you consider to be three needs in autism services within your country/region? 14. Please list what you consider to be three strengths in autism policy within your country/region? 15. Please list what you consider to be three needs in autism policy within your country/region? 16. Please list what you consider to be three strengths in autism advocacy within your country/region? 17. Please list what you consider to be three needs in autism advocacy within your country/region? 18. Please list what you consider to be three strengths in autism surveillance within your country/region? 19. Please list what you consider to be three needs in autism surveillance within your country/region? 20. Please add any other comment you would like to make: If you would like to get in touch with us by email please write to consultation_process@autism2010.eu

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European Autism Action

Conference Report and Strategic Plan February, 2011

This Report arises from the project European Autism Action 2020: Working Conference on a European Strategic Plan for Autism, Dublin 2010 – EAAC

which has received funding from the European Union, in the framework of the Public Health Programme

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Foreword Autism is one of the great public health challenges of our time: it is a lifelong condition which creates enormous strain, not just for those with the condition, but also for their families. Business has long since learned that quality does not cost – it pays. So it is with autism; a central premise of this report is that it is more costly to do nothing about the public health problem of autism, than to confront it. More importantly, in reducing the need for supports, we would also be helping people with autism to lead independent, productive lives. The big problem we face in Europe is – where do we start? The public health problem with autism is complex. Autism is a spectrum disorder, it presents with varying severity and in many different ways. Because of this, there is no simple solution that we can implement to improve outcomes and address the crippling societal and financial costs we have. What is needed is a range of solutions, tailored to the challenges, and the life cycle stage of the individual. The good news is that a huge number of health professionals, academics and parent organisations throughout the EU are doing wonderful work in research, intervention and policy creation. Our challenge is to coordinate those efforts effectively to achieve better outcomes, faster progress and lower costs. The Dublin 2010 Conference marked a starting point to the European Autism Action strategic plan (EAA2020), which will help to make the change in approach that is needed. The plan seeks to cohesively integrate the components and the variety of stakeholders, while taking cognisance of the size and diversity of the European Community itself. It is an ambitious undertaking, only made possible by the conviction of countless parents and professionals, and the wisdom of DG-SANCO in supporting it. Together, our efforts will determine the lives of future generations. I asked rhetorically on the day, whether we will look back in ten years and say that we rose to the challenge of solving the public health problem of autism. All I know is that the ability and the will are there in abundance; if this is matched by our organisation and adequate EU support, the answer will be yes. Brian Murnane Chairman Irish Autism Action

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“Looking at the reports available, it is disheartening to see only two countries

with extensive services while others have only begun to acknowledge the

condition as little as two to three years ago... Many people with autism if

allowed to reach their full potential can make a very real and significant

contribution to society”

‘The light at the end of the tunnel’ Jamie Reilly

European Autism Action Conference 29th November 2010

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Acknowledgements I would like to sincerely thank the Board of Directors of Irish Autism Action, the European Commission Executive Agency for Health and Consumers, the Irish Government Department of Health and Children and Autism Speaks for supporting this project and its ambitions for a strategic health plan for autism in Europe; I earnestly hope that we can bring these ambitions to fruition and benefit those families who live with autism spectrum disorders across Europe through the recommendations of this report. I would particularly like to mention Mr Antoni Montserrat, Policy Officer for Rare and Neurodevelopmental Diseases at the European Commission (DG-SANCO), who has been so committed to the issue of autism over the past number of years. The central objective of European Autism Action 2020 was to consult with stakeholders from across Europe and I would like to thank the hundreds of people who read the information that was sent to them by e-mail about this process, those that responded to the online survey and all those who took the time to prepare country presentations and participate in the sub-regional meetings in Budapest and Mallorca; the delegates are named in the main body of the report. I would particularly like to mention the great support and hospitality we were shown by Maribel Morueco and her staff in Palma de Mallorca and Zsuzsanna Szilvasy and her staff in Budapest as they made arrangements for the meeting venues and special touches that I believe made the meetings memorable occasions for all the participants. I would also like to thank all those who travelled through the ice and snow to Dublin in November to listen to the outcomes of European Autism Action 2020. An online survey was conducted through the conference website and, as well as all those who kindly responded to the survey, I would also like to thank those who volunteered as translators; they are named in the main body of the report. We were honoured to have eminent speakers at the meetings who ‘set the scene’ for our discussions so eloquently; my sincere thanks and appreciation to Professor Patrick Bolton, who spoke in Budapest and Professor Antonio Persico who spoke in Mallorca when Dr Louise Gallagher, who had kindly agreed to speak, was unable to due to travel difficulties. At the Dublin conference there were more travel issues; due to heavy snow Professor Ann Le Couteur was unable to travel from the UK but thanks to the wonders of modern technology was able to present her keynote speech and participate in the breakout sessions and panel discussion. I would also like to express my thanks to Ms Zsuzsanna Szilvasy, Dr Simon Wallace, Mr Antoni Montserrat and Ms Kari Steindal who spoke at the sub-regional meetings; Minister John Maloney and Ms Barbara Nolan who spoke at the Dublin Conference and Dr Louise Gallagher, Dr Karen Guldberg, Dr Kerstin Wittemeyer and Mr Andrew Boilson who facilitated very interesting breakout sessions in Dublin. I would like to give special thanks to Jamie Reilly who is on the autism spectrum and addressed the conference in Dublin with a very inspiring contribution and a real example of the great potential of people with autism to lead independent and fulfilling lives. I would like to express my appreciation also to Dr Will Spooren for his talk in Dublin. The series of events culminating in this report, the Panel of Experts Meeting, Sub-regional Meetings and Dublin Conference were all chaired by Sir Christopher Ball who managed the meetings with great expertise, wisdom and sensitivity; much was achieved in a short space of time thanks to his first-rate management of the meetings; I would like to thank Sir Christopher for this and for his considerable contribution to this report. Also, sincere thanks to Dr Simon Wallace of Autism Speaks who played a pivotal role in the preparatory work for the meetings and in writing this report. I sincerely thank Irish Autism Action’s Chairman, Mr Brian Murnane and CEO Kevin Whelan for all their input and support, Freddie Grehan and Ann O’Reilly who made all the travel arrangements and Nick Grisewood who made a great contribution to the writing of this report. Last but by no means least I would like to thank the conference staff, particularly Abigail O’Donovan, Patricia Garcia Primo, Anna McElhinney and Aisling Garry for all their hard work and support throughout this project; thanks to their dedication we have been able to take this important step forward in autism public health in Europe. Dr Alvaro Ramirez, Conference coordinator, European Autism Action Conference

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Table of Contents

Foreword ................................................................................................................................................. ii 

Acknowledgements ................................................................................................................................ iv 

Introduction ............................................................................................................................................. 1 

A brief history of autism ........................................................................................................................... 2 

Preparatory Work .................................................................................................................................... 7 

European Autism Information System project (EAIS) 2006-2008 ....................................................... 7 

European Network of Surveillance on risk factors in Autism and Cerebral Palsy (ENSACP) project 2008-2010 ........................................................................................................................................... 7 

Method .................................................................................................................................................... 8 

Strategic plan based on a programmatic public health approach ....................................................... 8 

Panel of Experts Meeting .................................................................................................................... 8 

European Sub-regional Meetings ........................................................................................................ 9 

Online consultation process .............................................................................................................. 11 

Findings of the consultation process ..................................................................................................... 12 

Services ............................................................................................................................................. 15 

Research ........................................................................................................................................... 17 

Awareness and Advocacy ................................................................................................................. 19 

Policy ................................................................................................................................................. 21 

Epidemiology ..................................................................................................................................... 23 

Conclusions and recommendations for the European Autism Action 2020 plan .................................. 25 

Services ............................................................................................................................................. 25 

Research ........................................................................................................................................... 26 

Awareness and Advocacy ................................................................................................................. 26 

Policy ................................................................................................................................................. 27 

Epidemiology ..................................................................................................................................... 27 

Annexes ................................................................................................................................................ 31 

Annex 1: Panel of Experts Report ......................................................................................................... 32 

Annex 2: Programmes and Reports from two Sub-Regional Meetings and Dublin Conference .......... 40 

East European Sub-Regional Meeting .............................................................................................. 40 

West European Sub-Regional Meeting ............................................................................................. 43 

European Autism Action Conference (Autism2010), Dublin ............................................................. 47 

Annex 3: European Autism Public Health Alliance (eapha) strategy document ................................... 50 

Annex 4: Countries Report .................................................................................................................... 59 

Albania .................................................................................................................................................. 60 

Austria ................................................................................................................................................... 61 

Belgium ................................................................................................................................................. 62 

Bosnia & Herzegovina ........................................................................................................................... 63 

Bulgaria ................................................................................................................................................. 64 

Croatia ................................................................................................................................................... 65 

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Czech Republic ..................................................................................................................................... 66 

Denmark ................................................................................................................................................ 67 

Estonia .................................................................................................................................................. 68 

Finland ................................................................................................................................................... 69 

France ................................................................................................................................................... 71 

Germany ................................................................................................................................................ 73 

Greece ................................................................................................................................................... 74 

Hungary ................................................................................................................................................. 75 

Iceland ................................................................................................................................................... 76 

Ireland ................................................................................................................................................... 78 

Italy ........................................................................................................................................................ 79 

Latvia ..................................................................................................................................................... 80 

Lithuania ................................................................................................................................................ 81 

Luxembourg .......................................................................................................................................... 82 

Macedonia ............................................................................................................................................. 83 

Malta ...................................................................................................................................................... 84 

Moldova ................................................................................................................................................. 85 

The Netherlands .................................................................................................................................... 86 

Norway .................................................................................................................................................. 87 

Portugal ................................................................................................................................................. 89 

Romania ................................................................................................................................................ 90 

Slovakia ................................................................................................................................................. 92 

Slovenia ................................................................................................................................................. 93 

Spain ..................................................................................................................................................... 95 

Sweden ................................................................................................................................................. 96 

Switzerland ............................................................................................................................................ 97 

Ukraine .................................................................................................................................................. 98 

United Kingdom ................................................................................................................................... 100 

Annexes to Countries Report .............................................................................................................. 101 

Annex I. Research in Iceland : A selection of References .............................................................. 101 

Annex II. Research in Norway: A selection of References .............................................................. 102 

Annex 5: European Autism Action Conference (Autism2010) Brochure ............................................ 103 

1

Introduction Autism spectrum disorders (ASD) are a family of heterogeneous neurodevelopmental disorders, with unknown aetiology that may involve genetic, immunological or environmental risk factors, or a combination of these. It is characterised by deficits in (a) social interaction, (b) communication, and (c) unusual repetitive behaviours. ASD is a significant public health issue. The population of 27 EU member states in 2010 is 501,064,212. With current estimates suggesting 1 in 110 individuals in a population being affected by Autism Spectrum Disorders (ASD), it is conceivable that approx 5 million people in EU member states are living with the condition. Taking into account that each person with ASD is one of a family the actual number of people affected by ASD could be up to 20 million (equivalent to the entire population of Belgium and The Netherlands combined). The overall European response for people living with ASD, their families and carers is unclear and uncoordinated; current estimates indicate that ASD is more common than childhood cancer, juvenile diabetes and paediatric AIDS combined. As a lifelong condition autism bears significantly high societal costs. For these reasons alone it should command priority in public health policy. As early as 1996, the European Parliament launched an official declaration in which it urged the EC to fully support any effort to develop the rights of people with autism. It was a full ten years later that the European Autism Information System (EAIS) project (2006-2008), led by the Hope Project, Ireland and co-funded by DG-SANCO, attempted to address the lack of systematic, consistent and reliable data about ASD in Europe and the lack of agreed and harmonised early detection tools across the EU. The European Network of Surveillance on risk factors in Autism and Cerebral Palsy (ENSACP) project (2008-2010), led by Irish Autism Action and co-funded by the European Agency for Health and Consumers (EAHC), published technical and education manuals for public health workers, researchers and clinicians to highlight ASD and CP risk factors. The wider implication of the project’s activities was to contribute to improved understanding by a range of stakeholders and the general public across the EU of the causes of ASD and CP, leading to further opportunities for targeted intervention and prevention strategies. The challenge to develop a strategic public health plan for autism that is comparable between countries yet respectful of national differences in a region as large and diverse as Europe is enormous. There are significant differences between countries in terms of public health systems and services, language and capacities, especially for transition countries, but it is a challenge that must be met in order to allow persons with ASD the opportunity to achieve their full potential, lead a rewarding existence and contribute to society. This is no less than a basic human right. This document charts the process and method used in developing the ten-year strategic public health plan ‘European Autism Action 2020’ (eaa2020); the findings of a comprehensive and intensive consultation with stakeholders from 35 European countries at two sub-regional meetings and an online consultation. This is followed by the conclusions and recommendations which have been incorporated into the plan.

2

A brief history of autism Autism was first described in an article by Dr Leo Kanner – a New York psychiatrist – in 1943. Kanner wrote his paper on a series of children he had seen clinically who shared similar features; most notably that a profound aloneness dominates their existence and that changes can be made by nobody but themselves. Kanner quotes from a letter a mother sent him describing her 3½ year old boy: “He has gradually shown a marked tendency toward developing one special interest which will completely dominate his day’s activities. He talks of little else while the interest exists, he frets when he is not able to indulge in it....and it is difficult to get his attention because of his preoccupation....There has also been the problem of an over-attachment to the world of objects and failure to develop the usual amount of social awareness” (p.233) In addition, three of the eleven children did not develop speech and those eight that did were delayed in their development and used language in repetitive ways. In the letter from the same mother, she describes her child’s language: “Language developed slowly; he seemed to have no interest in it. He seldom tells experience. He still confuses pronouns. He never asks questions in the form of questions (with the appropriate inflection). Since he talked, there has been a tendency to repeat over and over one work or statement. He almost never says a sentence without repeating it.” (p.233) Kanner summarised these eleven children and made a number of important clinical observations (e.g. around levels of intelligence and feeding patterns) that are still extremely relevant today. His final comment from the article was that it must be assumed that these children come into the world with an “innate inability to form the usually, biologically provided affective contact with people” (p.250). But despite this clear hypothesis of a biological basis for the causes of autism, during the 1960s and 1970s the predominant psychodynamic theory was that a lack of affective contact from mothers to their child was what caused the anxious, distant and isolated sense of children with autism. In his era-defining book, The Empty Fortress, Dr Bruno Bettelheim stated that: “The infant, because of pain or discomfort and the anxiety they cause, or because he misreads the mother’s actions or feelings, or correctly assesses her negative feelings, may retreat from her or the world. The mother, for her part, either frustrated in her motherly feelings, or out of her own anxiety, may respond not with gentle pursuit, but with anger or injured indifference.” (p.73) This led to a debate amongst the professional community about the causes of autism, and without sound evidence of the biological basis for the disorder the psychodynamic theory continued to hold significant sway over the way autism was described and treated. The level of frustration for parents and those professionals who were faced with the psychodynamic theorists can be imagined by reading this quote taken from Bettelheim in the Empty Fortress: “..there is reason to question the inborn nature of autism until such time as it is actually observed in newborn infants before mothering can have made a difference.” (p.401) Many mothers were subjected to negative social stigma because of the popular belief that they had a causal role to play in their child’s atypical development. This was until the evidence began to grow of a biological basis for the condition. Most significant was Folstein and Rutter’s 1978* paper that looked at twin pairs to see if there was a higher concordance of autism (i.e. if one twin has autism what is the likelihood that the other has autism?) in genetically identical twin pairs compared to genetically non-identical twin pairs. This pattern of higher concordance in genetically identical pairs was indeed found, providing good evidence of a genetic basis for autism and adding evidence against the psychodynamic theory. Around a similar time in the late 1970s and early 1980s, professionals and parents began to hear of the term Asperger syndrome and that autism was a spectrum of conditions, which encompassed varying strengths and difficulties from one individual to the next. In a similar way to Kanner, Hans Asperger described a series of case studies taken from 100s of children seen in his clinic but they

3

were somewhat different from the cases Kanner described in that they had intellectual skills within the typical range, they had good verbal skills and in some cases were aware of their difficulties. In 1994, as well as Asperger syndrome, Pervasive Developmental Disorder not otherwise specified (PDDnos) became part of the latest edition of the Diagnostic and Statistical Manual (DSM) and so clinicians had more options in terms of diagnostic terms to use. This widening of the autism spectrum was largely responsible for the significant increases in the prevalence of autism and between the mid-1990s to 2010 the number of estimated children in the population with an autism spectrum disorder went from one child in 500 to one child in 110. Over the last 15 years, the increase in the number of children diagnosed with an autism spectrum disorder (ASD) has led to an increase in the governmental and public awareness of these conditions. What remains clear though is that this increased awareness is not universal and in many countries autism is still regarded as a rare condition and parents struggle to successfully lobby for greater services for their children and reduce negative social stigma.

Autism Spectrum Disorders Autism Spectrum Disorder (ASD) is a lifelong disorder that has profound effects on an individual’s development. Within the autism spectrum there is enormous diversity in the profile that each individual may show. Some individuals may be described as living in their own world and not engage in social interaction, even with their parents; whereas others may desire social contact but do not understand the rules governing social interaction. Some individuals may never develop speech or are reliant on communicative aids; whereas others may have an extensive vocabulary but fail to understand how to engage in a conversational to-and-fro. Some individuals may spend much of their time engaging in solitary repetitive behaviours (e.g. lining up objects); whereas others may have restricted interests but identify practical ways to use the skills they have developed. This diversity in the way that ASD presents itself from one individual to the next means that one must always remember the adage that when you have met one person with ASD, you have met one person with ASD. Along with the complexity of the core social, communication and behavioural features, ASD has a number of other characteristics. ASD is more common in males than females. For autism the ratio is approximately 4:1 and for Asperger syndrome the number of males to females is higher. Some individuals with ASD follow a pattern of regression in their development, usually between the first and third birthdays. From parental report, approximately one third of children on the autism spectrum reach a point in development when they begin to lose social, language or other skills. Approximately half of individuals with ASD have an additional intellectual disability and they are at increased risk of additional medical diagnoses. Rates of epilepsy, sleep difficulties, feeding and gut difficulties, mental health problems, other developmental disorders and learning difficulties are higher in individuals with ASD. Diagnosing autism still remains a significant challenge. Screening tools such as the Social Communication Questionnaire (SCQ) and the Modified Checklist for Autism in Toddlers (M-CHAT) have assisted paediatricians and other healthcare professionals in identifying children who may require a diagnostic assessment for ASD and these screeners have also been used in epidemiological studies. The development of diagnostic tools such as the CARS (Childhood Autism Rating Scale), DISCO (Diagnostic Interview for Social and Communication Disorders), the ADI-R (Autism Diagnostic Interview – Revised) and the ADOS (Autism Diagnostic Observation Schedule) have greatly assisted clinicians in diagnosing ASD and the training protocols attached to these instruments have improved professional conceptualisation of the breadth of the autism spectrum. The study of early development in infant siblings who are at risk of developing ASD (i.e. they have an older sibling with an ASD) is helping to identify very early signs for ASD (see http://www.firstsigns.org/) and in the US this has led to diagnosis occurring earlier. In most cases diagnosis of ASD is reliant on the impression of the lead clinician or a multidisciplinary team, and so quality professional training is key to the accurate and early diagnosis of ASD. Taken together, these numerous core and associated clinical characteristics of ASD offer a level of complexity in terms of how we understand this disorder. Many of the clinical, behavioural, cognitive and biological features (phenotypes) have been used to guide scientists as to the genetic and environmental mechanisms that underlie ASD. Indeed, one of the great advances over the last twenty

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years has been our understanding of the genetic causes of ASD. Initial studies looked for regions of the chromosomes that may be similar in families where there was either one child (simplex families) or more than one child (multiplex families) with ASD. As the technology of sequencing the human DNA became more advanced, then so improved scientists’ ability to look for small differences in the way that the DNA of individuals with ASD was constructured. Most recently there have been a number of studies that have reported regions of DNA where there is duplication in the DNA code or where parts of the code are missing, and it is hypothesised that these copy number variations (CNVs) have a causal role to play in a minority of ASD cases. There are also well known examples of syndromes and disorders that have a similar clinical profile to ASD but that the underlying genetic mechanisms are likely to be different. Examples of these include Fragile X, Rett Disorder and Tuberous Sclerosis, as well as rare single gene mutations such as neuroligin, neurexin and shank genes. The conclusion from the ever-growing literature on genetics studies of ASD is that the susceptibility genes are expressed in the brain and particularly affect how synapses (the junction at which electrical and chemical signals transmit between cells) function. In searching for the causes of ASD, scientists have also been exploring environmental risk factors that may act independently or via an interaction with genetic factors. Environmental factors are usually regarded as “non-genetic” influences on biology and behaviour. Researching these factors is no mean task, as in the first place there are only a few clues to potential environmental risk factors that are causally related to ASD and it can be very difficult to isolate one risk factor from other environmental factors that the child is exposed to. This is an emerging field of research and some studies have begun to identify possible environmental risks that may account for a very small group of individuals on the spectrum, such as exposure to particular medications, maternal infection or chemical agents during birth, but these findings still need to be replicated. A question that has dominated the field of environmental sciences and ASD has been whether multiple vaccinations or the use of thiomersal in vaccinations has a causal link to ASD. The weight of the scientific evidence does not support a causal association of vaccination use with ASD. It has been shown in numerous epidemiological studies, that there is no association of changes in the number of children diagnosed with ASD with the introduction or removal of vaccinations (whether that is the triple vaccination MMR, or the use of thiomersal in vaccine production). Even if there is a theoretical causal link between vaccinations and ASD, the risks and consequences of not vaccinating children are higher than those associated with developing ASD. Epidemiological research plays an important role in answering questions about risk factors for ASD and variations in the number of individuals with ASD in one population compared to another can give clues to the nature of risk. Epidemiological research can be used to compare prevalence rates across populations that vary in their genetic architecture, as well as countries that vary in terms of specific environmental factors. One of the limitations of epidemiological research is the lack of consensus in study design, making it difficult to compare from one country to the next. Research of the causes of autism has moved forward at pace but for the vast majority of cases there does not exist a clear causal relationship between specific risk factor/s and ASD. It is highly likely that a combination of genetic, environmental and gene x environmental factors cause ASD, and what causes ASD in one person will differ from what causes ASD in someone else. Many in the research field are now talking about “the autisms” as many single and interacting risk factors will be causal for various types of ASD. That the science has developed to such a degree means that some of the genetic findings have been tested in animal models to explore how the genes underlying ASD are expressed in the brains of animals. The next natural step would be to develop pharmacological treatments that may ameliorate some of the more challenging behaviours and associated symptoms of ASD. Scientists are beginning to conceptualise how these genetic findings and potential future treatments can be translated into clinical practice and the ethical considerations are now beginning to be debated with the community. Currently, the only medication approved by the Food and Drug Administration (FDA) for ASD is risperidone, which is approved to treat irritability associated with autistic disorder. A number of pharmacological targets have been tested for use in ASD but they have not shown significant beneficial effects to be approved for use. However, clinicians do use their discretion to select from a range of medications to treat ASD and in some countries, because of a lack of alternative

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interventions, many children with ASD will be on one or a combination of medications. The high rate of associated mental health difficulties (a recent survey of the UK’s National Autistic Society estimates that approximately 70% of individuals with ASD meet criteria for a secondary psychiatric or mental health condition) means that many adolescents and adults are prescribed anti-depressant or anti- anxiolytic medication. Despite the relatively high use of medication in treating symptoms of ASD, the most common treatments for ASD are behavioural or school-delivered interventions. There are a large number of behavioural, educational and cognitive interventions that are open to practitioners to use in delivering services for children on the autism spectrum. Some interventions target specific skills, such as the Picture Exchange Communication System (PECS) and Social Stories, but the two broad approaches most commonly used in intervention for children with ASD are Applied Behavioural Analysis (ABA) and Treatment and Education of Autistic and Communication related handicapped CHildren (TEACCH). ABA is an Early Intensive Behavioural Intervention (EIBI) that was first described and evaluated for children with ASD by Ivar Lovaas in 19871 who described an intervention that was therapist-led, was administered by repeatedly teaching discrete behavioural targets, was one-to-one with the therapist, required the collection and ongoing evaluation of data points, and was intensive (Lovaas’s therapy was approximately 40 hours per week). Lovaas claimed that after two years of intervention 47% of the children attained “normal intellectual and educational functioning” (p.3). There has been much debate since Lovaas’s original paper about whether the study was scientifically rigorous enough and there has been mixed findings when others have attempted to replicate the original study. TEACCH is a less structured method of delivering intervention compared to ABA and allows the child to take more of a role in directing the intervention. TEACCH sets the environment for the child to be educated and was developed by Dr Eric Schopler, who was a psychologist and professor of psychiatry and psychology at the University of North Carolina. The main principles of TEACCH are to: develop an individualised educational programme based on ongoing assessment of need; structure teaching; use visual prompts; collaborate with the parent; adapt the environment to make it optimal for the child’s learning. The research evidence in support of TEACCH is difficult to interpret because of various methodological issues (e.g. small sample sizes; few studies where just TEACCH is being delivered rather than in combination with other interventions) but many practitioners are convinced by the results they see, which has led to the adoption of this approach in many countries and despite the lack of agreement in the research community, there has been some positive evidence on early intervention2. A lack of strategic investment in intervention research has meant that the immediate and long-term effects of early and school-age interventions have not been fully explored. What remains an open question is why some interventions work for some children but not all. A set of more recent questions have been at what age should interventions be delivered, who should be delivering them and on what basis should an approach be selected for a particular setting. In 2010 Drs Geraldine Dawson and Sally Rogers published on the Early Start Denver Model (ESDM)3, a mixed developmental and ABA approach, which was delivered to very young children with autism (<30 months of age) by trained therapists as well as parents (who have completed training). Over two years, and as part of a well controlled design, children who received ESDM showed a 17 point IQ increase compared to the control group who increased by 7 IQ points. This study demonstrated how effective intervention can be delivered to very young children with ASD, in home and clinic settings, and by a mixture of trained therapists and parents.

1 Lovaas O.I. (1987): Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9. 2 Charman T. and Howlin P. (2003): Research into early intervention for children with autism and related disorders: methodological and design issues. Autism: International Journal of Research and Practice 7 217-225.  3 Dawson G. Rogers S. Munson J. Smith M. Winter J. Greenson J. Donaldson A. Varley J. (2010): Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics 125(1):e17-23.

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There is a range of treatment and educational options for children with ASD but services for adults on the spectrum have been sorely lacking. Whether it is providing adequate diagnostic services to identify adults who remain undiagnosed, mislabelled or “lost” in the healthcare services; or it is providing community services and opportunities that allow adults with ASD to feel included in society. Most adults with ASD do not receive specialist autism services and are either within services for individuals with intellectual disabilities or mental health problems, but for the majority of the time they are supported by their parents at home, which raises the important question of what happens when adults with ASD reach an age when their parents are no longer alive? The UK economic cost figures for ASD are extremely telling. Of the €32bn ASD costs the UK economy each year (currency conversion from £-€, November 2010), €29bn is for adults and a significant proportion of that cost is in lost employment of individuals with ASD and their families. Families with individuals on the autism spectrum continue to face significant challenges. Whether it is having the professional community listen to concerns about their child’s development, or accessing information on what treatments work best once ASD has been diagnosed. In most countries the best services have been started by family members and advocates but for the majority of parents their remains a daily struggle to have the right education for their children. A lack of professional and government awareness of ASD means the voice of individuals with ASD and their families is not heard and the stigma associated with ASD remains a significant barrier. It is clear, however, that by allowing individuals with ASD the opportunity to succeed and achieve their full potential, which we would expect for ourselves as a basic human right, individuals with ASD can lead a rewarding existence and contribute to society.

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Preparatory Work

European Autism Information System project (EAIS) 2006-2008 In 2005 the Hope Project established the European Autism Information System (EAIS) to address the lack of systematic, consistent and reliable data on ASD and the lack of agreed and harmonised early detection tools across Europe. By adopting an articulated strategy, including networking among major European stakeholders, the project aimed to mobilise the scientific community to discuss and agree upon appropriate tools to measure and monitor cases of ASD and the economic impact they have on families and States. The EAIS project conducted activities and formulated strategies in the following four key areas to improve the quality of life of children and families affected by ASD: Establishing accepted characteristics of ASD to facilitate studies on prevalence across Europe.

This work included the design of a European Protocol for Autism Spectrum Disorder Prevalence. Establishing common criteria to assess the financial burden of identifying and treating disorders in

different countries, including provision of appropriate services. Developing mechanisms to obtain systematic, reliable and consistent data on ASD in Europe, in

particular through the design of a database registry programme to facilitate the establishment of a European population-based surveillance system for ASD.

Developing a harmonised early detection tool through screening to facilitate early diagnosis of ASD.

The EAIS project succeeded in laying the foundations for each of these four key strategic areas. It also highlighted the challenges and complexities in creating an information network for consistent and reliable information on ASD within the EU. The EAIS project has highlighted a number of activities that are required to reinforce progress made in the field of ASD, including establishing a comprehensive set of selection criteria for pilot study areas of the harmonised tools developed by the EAIS and proceeding with the implementation and follow-up of these studies. The EAIS aimed to help a growing percentage of the EU population that is affected by ASD and to facilitate a more reliable interpretation of autism trends in Europe which would contribute to effective and informed decision-making by public health authorities and to developing vital policies and programmes. Ultimately, the EAIS project outcomes could be further developed to become a comprehensive EU surveillance system of ASD. The importance of continuing the high-level collaboration of experts in the field of autism epidemiology cannot be underestimated The EAIS project laid the groundwork for what was to become the European Autism Public Health Alliance (eapha) in 2010. eapha is an alliance of stakeholders working to create a pan European public health plan for autism and is the vehicle that will drive the 10-year public health plan for ASD forward. This Alliance was formally launched at the European Autism Action Conference in Dublin on 29th November 2010 (eapha’s strategy document is presented in Annex 3).

European Network of Surveillance on risk factors in Autism and Cerebral Palsy (ENSACP) project 2008-2010 The challenge of identifying and understanding risk factors contributing to ASD and CP motivated a group of concerned EU-based medical and scientific experts to develop and present a project proposal focusing on risk factors, for co-funding to the European Commission (EC) in 2007. As a consequence, the European Network of Surveillance on risk factors in Autism and Cerebral Palsy (ENSACP) project was launched in early 2008. Its primary focus was to review existing research on the prenatal, perinatal and neonatal4 risk factors together with biochemical differences. The ultimate goal is to develop and implement surveillance systems for both ASD and CP across the EU and establish a knowledge management platform to support further research studies into the prevention of these conditions.

4 Prenatal refers to the time before birth. Perinatal is the time immediately before and after birth. Neonatal refers to new-born

children.  

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Method The method used to achieve the objective of preparing and developing the ten-year strategic public health plan European Autism Action 2020 (eaa2020) was a programmatic planning framework for public health. This was applied to the entire consultation process including the series of meetings described below. The planning framework is a tool or method to improve the planning and management of public health in ASD. It aims to ensure that public health actions proposed by the strategic plan are as effective as possible. In the field of ASD, actions and processes have traditionally been characterised by a fragmented approach and have sometimes been competitive, antagonistic and non-cooperative. The planning framework adopted for ASD in Europe is grounded in the reality that public health in ASD has to be what all the involved parties, governments, academia, the private sector, communities, and organisations do collectively to improve the quality of life for persons with ASD, their families and carers.

Strategic plan based on a programmatic public health approach A programmatic approach allows an effective public health plan. Defining and reducing determinants are an integral part of the plan. The eaa2020 planning framework encourages coordination between actors/stakeholders and sees the participation of all as valuable and necessary. Summary of a programmatic approach:

1) Services - protection of affected population 2) Research - reduction in determinants/risk factors 3) Awareness 4) Policy 5) Epidemiology - studies based on good epidemiological practice (GEP) a) Prevalence of affected population

b) Distribution c) Trends d) Pharmacological vigilance e) Economic impact

The enormous diversity that currently exists within Europe magnifies the need for a common language and a multiple level of actions that respects national differences while working towards harmonisation across the region. The proposed public health plan is focused on long term outcomes and encompasses a means of evaluating the progress of this plan at various stages during the next ten years.

Panel of Experts Meeting The first of three meetings in the consultative process was held in Luxembourg on 11th and 12th March 2010 hosted by DG-SANCO. This brought a panel of thirty-two experts together to discuss the future direction of ASD in Europe. The experts, working in the field of ASD from countries across Europe were asked what they considered to be strengths and specific needs in terms of autism services, research, awareness, policy and epidemiology both within their own countries and in Europe. This 3rd Panel of Experts meeting on ASD was a vital opportunity for many voices from the European community to be heard and for opinions to be shared as to how best meet the goal of improving the lives and opportunities of individuals with ASD and their families. The report of the Panel of Experts Meeting was revised after members commented on the original draft and then a second draft was completed in June 2010 and went out for community consultation through the Autism2010 website. The comments were collected and used to revise the report and guide the content for the next stage. A full report of this meeting will be found in Annex 1 of this document.

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European Sub-regional Meetings Two sub-regional meetings were held during 2010. The East European sub-regional meeting was held on 13th & 14th September 2010 in Budapest, Hungary. A total of 17 countries were represented by 41 delegates. The West European sub-regional meeting was held on 23rd and 24th September 2010 in Palma de Mallorca, Spain. A total of 18 countries were represented by 59 delegates. Brief reports and the programmes from both these meetings may be found in Annex 2 of this document. Delegates at the meetings were:

Budapest speakers and facilitators: Sir Christopher Ball (Chairman), UK; Professor Patrick Bolton, Institute of Psychiatry, UK; Ms Zsuzsanna Szilvásy, Autism Europe; Dr Simon Wallace, Autism Speaks; Dr Alvaro Ramirez, Irish Autism Action, Ireland.

Budapest delegates: Dr Apostol Apostolov, Karin Dom Foundation, Bulgaria; Ms Ivelina Veselinova Dudrenova, Karin Dom Foundation, Bulgaria;

Ms Mirka Jelínková, Autistik, Czech Republic; Dr Ivo Paclt, Ministry of Health, Czech Republic;

Ms Maret Rander, Tartu University and “Astangu Vocational Rehabilitation Centre”, Estonia; Ms Piret Visnapuu, Tallinn Children`s Hospital, Estonia;

Dr Kostas Francis, Athens University, Greece;

Ms Zsuzsanna Szilvasy, Hungarian Autistic Society and Autism Europe, Hungary; Dr Judit Simo, National Autism Research, Hungary; Ms Csilla Szauer, Public Foundation for the Equal Opportunities of Persons, Hungary; Dr Bea Pászthy, Semmelweis University, Budapest, Hungary;

Ms Renate Lukjanska, NGO Lespeju Cels, Latvia; Mr Ainars Skrebelis, NGO Lespeju Cels, Latvia;

Ms Egle Ducinskiene, Kitoks Vaikas, Lithuania;

Dr Agnieszka Rymsza, Synapsis Foundation, Poland; Ms Izabela Chojnicka, Medical University of Warsaw, Poland;

Prof. Anca Dobrean, Bolyai University, Cluj-Napoca, Romania; Ms Domnica Petrovai, Ministry of Health, Romania;

Mr Mikulas Stubna, Society for the Help of People with Autism (SPOSA), Slovakia; Dr Maria Stefikova, Child and Adolescent Psychiatry Clinic, Bratislava, Slovakia 

Ms Eva Simikič, Slovenian Centre for Autism, Slovenia; Dr Marta Macedoni-Luksic, University Paediatric Hospital, Ljubljana, Slovenia; Ms Katjusa Nadiza-Habjanic , Ministry of Employment, Family and Social Affairs, Slovenia; 

Ms Lidija Penko, Croatian Society for Autism, Croatia; Ms Gordana Aljinović, "Mother for Child", Croatia;

Prof. Dr Vladimir Trajkovski, St. Cyril and Methodius University and Macedonian Scientific Society for Autism, Macedonia;

Mrs Entela Vakiari, Albanian Children Foundation (ACF), Albania; Prof. Anastas Suli, University Hospital Centre ‘Mother Teresa’, Albania;

Mrs Kornelija Sabo Mehić, parent, Bosnia & Herzegovina; Prof. Dr Sadeta Zečić, Sarajevo University, Bosnia & Herzegovina;

Dr Igor Martsenkovsky, Ministry of Health, Ukraine;

Dr Tatiana Valica, Moldova State University of Medicine and Pharmacy, Moldova;

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Mallorca speakers and facilitators: Sir Christopher Ball (Chairman), UK; Mr Antoni Montserrat, European Commission DG-SANCO; Professor Antonio Persico, University Campus Bio-Medico, Rome, Italy; Ms Zsuzsanna Szilvásy, Autism Europe; Ms Kari Steindal, National Autism unit, Norway; Dr Simon Wallace, Autism Speaks; Dr Alvaro Ramirez, Irish Autism Action, Ireland.

Mallorca delegates: Dr Anna Dirmhirn, St. John of God Hospital, Austria; Dr Therese Zöttl, Rainman's Home, Austria;

Dr Eric Willaye, Mons-Hainaut University, Belgium; Ms Aurelie Baranger, Autism-Europe, Belgium; Mr Olivier Fourez, INAMI, Belgium;

Ms Marianne Tankred Lukow, Centre for Autism, Denmark; Mr Morten Carlsson, Autism Denmark, Denmark;

Dr Anneli Kylliainen, Tampere University Hospital, Finland; Ms Elina Mirjami Hagman, The Finnish Association for Autism and Asperger’s Syndrome, Finland; Dr. Marko Kielinen, University of Oulu, Finland;

Prof. Bernadette Rogé, Toulouse University, France; Ms Amelie Churlet, Vaincre l’Autisme International (France and Africa) Association, France; Mr M’hammed Sajidi, Vaincre l’Autisme International (France and Africa) Association, France;

Prof. Christine Freitag, JW Goethe University, Frankfurt, Germany; Prof. Fritz Poustka, Germany;

Mr Brian Murnane, Irish Autism Action, Ireland; Prof. Anthony Staines, Dublin City University, Ireland;

Prof. Antonello Persico. University Campus Bio-Medico, Rome, Italy; Dr Daniela Mariani Cerati, Association of Italian Parents of Autistic Children (ANGSA), Italy;

Ms Sylvie Leisen Glesener, Parents association for autistic children and adults in Luxembourg (APPAAL), Luxembourg;

Ms Doreen Mercieca, STEP, Malta; Dr Rita Micallef, University of Malta, Malta;

Dr Maretha De Jonge, University Medical Centre Utrecht (UMCU), Netherlands; Mr Fred Stekelenburg, Nederlandse Vereniging voor autisme, Netherlands;

Prof. Isabel Cottinelli Telmo, Portuguese Federation for Autism, Portugal; Prof. Pilar Levy, University of Lisbon, Portugal;

Ms Anna Calissendorff, National Society of Autism and Asperger syndrome, Sweden; Dr Harald Sturm, Stockholm, Sweden;

Dr Evald Saemundsen, State Diagnostic and Counselling Centre, Iceland; Mr Jon Ari Ingólfsson, Iceland Autistic Society, Iceland;

Ms Maribel Morueco Alonso, “Gaspar Hauser” (APNAB), Mallorca, Spain; Dr Manuel Posada de la Paz, Rare Diseases Research Institute (IIER), Institute of Health Carlos III, Spain; Prof. Ricardo Canal Bedía, University of Salamanca, Spain; Dr. Joaquin Fuentes Biggi, Policlínica Gipuzkoa and GAUTENA, Spain; Dr Francesc Cuxart, Fundació Privada Congost-Autisme and Autonomous University of Barcelona, Spain; Mr Jose Luis Cuesta, Spanish Association of Autism Professionals (AETAPI), Spain; Dr Mara Parellada, University Hospital Gregorio Marañón, Madrid, Spain;

Mr Jim Taylor, Scottish Society for Autism and Celtic Nations Autism Partnership, UK; Dr Jeremy Parr, Newcastle University, UK;

Mr Thomas van der Stad, Autism Switzerland, Switzerland;

Dr Gun Iversen, Helse Bergen Haukeland University Hospital, Norway; Ms Kari Steindal, National Autism Unit, Norway.

The agenda for the sub-regional meetings were of the same format as for the Panel of Experts meeting. One significant difference was that in the afternoon of the first day there was a series of presentations made by representatives from each country. Each nominated delegate was set the challenge of describing ASD in their country from a public health perspective on services, research, awareness, policy and epidemiology. During these meetings delegates worked in intensive small

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group sessions to produce recommendations for European strategic development on autism. Consensus was then reached in large group sessions on what the priorities should be.

Online consultation process Despite the usefulness of these face-to-face meetings there was clearly a limit in the number of opinions that could be heard through this process. Therefore, an online consultation process was designed to ensure that the strategic public health plan ‘European Autism Action 2020’ (eaa2020) has the input of as many stakeholders across Europe as possible. The organisers of the conference worked diligently to accomplish this goal and with the invaluable assistance of a team of translators from all across Europe this process was made available in the following languages, translated from the original in English:

Language Translation by courtesy of: Spanish Patricia Garcia Primo French Leo et Claudine Amery German Kerstin Wittemeyer Dutch Natalie Boyce Hungarian Dora Ozorai Polish Izabela Chojnicka Albanian Entela Vakiari Lithuanian Egle Ducinskiene Croatian Lidija Penko and Gordana Aljinovic Greek Kostas Francis Мacedonian Vladimir Trajkovski Bosnian Kornelia Sabo-Mehić Serbian Kornelia Sabo-Mehić Czech Miroslava Jelinkova Romanian Anca Dobrean and Maria Cristina Nedelcu Slovene Vesna Melanšek Bulgarian Apostol Apostolov Italian Gabriella Poggi

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Findings of the consultation process

Key Findings of the Panel of Experts Meeting At the panel of experts meeting in March, it was agreed by the panel of experts that there were three principal considerations in elaborating a public health strategy framework: the main headings of the strategy; the key groups involved and responsible for follow-up under each heading; and national realities, needs and expectations. The group examined each of these areas in more detail to establish guidelines for discussions in the sub-regional meetings and ultimately for the preparation of the public health plan. As regards the content of public health policy on ASD, five major headings were agreed: services, research, awareness, policy and epidemiology. Each of these five areas is inter-linked and mutually dependent. Service provision would be informed by both the families of those living with ASD and their carers. Research would focus on children and adults with ASD. Responsibility for awareness would lie with national governments and they would be the principle targets for advocacy efforts. Health, education and policy professionals would be responsible for elaborating national public health policy on ASD. Finally, in terms of an EU-wide public health strategy on ASD, the EU itself would be responsible for epidemiology in terms of surveillance and monitoring in order to inform public health policy decision makers in their responses to address the causes and consequences of ASD. In terms of the latter, public health responses will of course be affected by the diverse nature of the 27 EU member States. Each country differs in their approaches to ASD and the policies and services they have for individuals on the spectrum. This will also affect their needs and expectations of an EU-wide public health strategy for ASD.

In general terms, the outcome of the meeting of the panel of experts reinforced the findings of the EAIS project and echoed the concerns of all stakeholder groups. In particular, experts agreed that: • more and better research is needed, especially into the prevalence and causes of autism; • there should be improved service provision, especially those related to early diagnosis and

interventions which are critical in offsetting the impact of ASD on those living with it, as well as ongoing support for adults and professional training;

• there should be improved co-ordination in the area of policy development, minimum standards in terms of diagnosis and treatment and the elaboration of a European public health strategy for autism;

• significant steps should be taken to increase public awareness of autism and to monitor the effects of interventions and treatments rigorously, in particular with regard to quality of life.

Based on the planning framework for public health which established the methodology for the consultation process, working groups examined each of the five major headings of research, services, policy, awareness and advocacy and surveillance and monitoring which resulted in the identification of key needs and priorities. These were further refined by the experts into a priority list of key areas under each of the five main headings which were used as guidelines to facilitate the sub-regional consultations:

Services • Diagnosis and support of adults with autism. • Increased and improved training for parents and carers. • Carrying out needs assessments with regular reviews.

Research • The identification of biomarkers to be included in treatment studies. • Reviewing the efficacy and cost-effectiveness of early intervention programmes. • Research into the co-morbidities of ASD and appropriate treatments.

Awareness • Recognition of the importance of self-advocacy. • Creation and co-ordination of lobby groups across the EU.

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• Need for accessible information for all stakeholder groups and effective communication about

autism to reduce stigma.

Policy • Co-ordination of policy amongst agencies and dissemination of models of good practice. • Establishing agreed protocols for professional training. • Harmonisation of national policies for autism.

Epidemiology • Establish a unique code for ASD in national registries. • Establish compatible databases and methods for recording and analysing prevalence. • Prioritise data to be collected and documented for surveillance. The experts also agreed that, to be truly effective, the principles of cost-effectiveness, rigorous research methodology and quality of life must underpin this work. In conclusion, the panel of experts meeting reached consensus that the launch of a project to develop a European-wide public health strategy for autism is desirable, worthwhile and timely and that it should include full consideration of the five main headings identified above. The experts also emphasised the central importance of ensuring a process of inclusive and wide-ranging consultation in all project activities. The report from the panel of experts meeting (Annex 1) was distributed to delegates of the sub-regional meetings prior to the meetings taking place.

Key Findings of Sub-Regional Meetings As well as contributing significantly to the process of developing a European public health strategy on autism, the ground-breaking sub-regional meetings also provided a unique opportunity for a broad range of stakeholders – some of them for the first time ever – to meet and exchange information on national approaches to diagnosing and treating ASD and on support services for those living with autism. There were 18 countries represented at the sub-regional meeting for Western Europe and 17 at the meeting for Central and Eastern Europe – 35 countries in total from across Europe involved in open and frank exchange on the growing challenges of ASD. The programmes were identical for both sub-regional meetings; the first sessions focused on “setting the scene” for participants in terms of the current situation in general for ASD and what the future might hold. This session also included presentations on the outcome of the panel of experts meeting in Luxembourg in March 2010 and the aims of the European Autism Public Health Alliance. Participants were given the opportunity to present national overviews which provided a rich collection of data and led to an emerging view of the level of differences between countries. Subsequently, through a series of working group and plenary sessions, participants identified and prioritised issues under each of the five identified headings of services, research, awareness, policy and epidemiology, leading to the emergence of recommendations for a European public health strategy on autism. Organising and facilitating the workshops were, in themselves, significant achievements at the European level and the level of information captured from the national presentations was invaluable. This section of the report, therefore, provides an overview of the outcomes of the sub-regional meetings and the extent of the disparities between countries and sub-regions in Europe (a full summary of the presentations from each country is presented in Annex 4). These disparities reinforce the reason why an EU public health strategy on autism cannot be based on a “one size fits all” principle and must take account of national and sub-regional environments. The section is broken down into the five key areas of an EU public health strategy on autism, focusing on the prime needs and concerns of the different sub-regions, some key developments and challenges and an early indication of priority areas. A common problem in public health policy development is that the process does not always include the voices of those who are affected most. Therefore, every effort has been made in the EAA consultation process to be as inclusive as possible, involving government agencies including education, health and social services, health and medical professionals, researchers, academics, parents and their associations and community-based civil society organisations. An online consultation process was designed and made available on www.autism2010.eu in order to elicit the

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thoughts and opinions of as many stakeholders across Europe as possible. A total of 229 responses were received. The online consultation methodology is currently under review to see where improvements can be made with the intention being to provide an ongoing and easily accessible means by which all stakeholder groups, organisations and individuals can contribute to the evolution of eaa2020. The responses that had to be translated are still being processed so for the purposes of this section of the report, a random sample of 30 responses to the online survey (received in English from several European countries) which have been received to date are included to contribute to priorities and recommendations. Through the deliberations of the sub-regional meetings and the panel of experts, as well as individual country presentations, it was evident that the needs of all stakeholders were considerable across the spectrum of five headings, further reinforcing the vital importance of national action plans and an EU-wide public health strategy on autism. The process, therefore, sought to elaborate a comprehensive list of needs and then to establish a shorter list of urgent priorities. Given the situation in different European countries, compounded by the current global economic crisis and severe cutbacks in public spending being applied in some countries to address these problems, it is crucial to establish a realistic list of key priorities.

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Services The panel of experts and the two sub-regional meetings stressed the need for the development of a model framework for services which would highlight essential support for those living with autism and professionals and carers involved with autism. It was noted that while a number of countries have begun to recognise the challenge of childhood autism and make some service provision for it, the situation of adults with autism requires significant attention to the development of relevant support services. It was also interesting to note that not only were there disparities in service provision between countries, but also within countries and between different geographic areas. The term “services” does not only refer to health care services, therefore, but to a very broad range of services and activities that are vital to improving the quality of life not only of autistic people, but also their families. No matter where a person with autism is located, their needs are essentially the same and it is important that these be developed to the highest level possible to enhance quality of life. Services may include: • primary and secondary health care, including for example, speech and physical therapy, home

care, psychiatric support; • education; • vocational education and training and apprenticeships; • residential care; • transport; • recreational and leisure activities; • home help for families, providing domestic services; • specialised employment services; • training for families and carers; • respite services for families and carers; • social welfare support services. The service type and level will of course depend upon individuals and their needs and expectations and there is no “one-size-fits-all” approach or combination. This is an issue that will require considerable research and analysis in terms of what is already in place in some countries and where gaps and weaknesses remain within service systems and what an effective model framework would look like. It is also a challenging issue for all stakeholder groups as the cost implications are significant. However, in many countries, these costs are currently being met by families, NGOs or other charitable organisations which is neither fair nor sustainable as the level of service provision in such instances depends almost entirely on the financial situation of families or the existence of non-governmental service providers. There is also significant disparity between the quality of service provision between countries and between non-governmental service providers. Providing a core of services adapted to different levels of severity on the autism spectrum through state bodies ensures quality control and facilitates monitoring and impact. Services provision is an essential element of a European public health strategy on autism.

Priorities During the sub-regional meetings, there was a certain amount of cross-over between awareness-raising and service provision which is inevitable, particularly in terms of training for different stakeholder groups. Reviewing the outcomes of the discussions by the two sub-regional meetings on service provision, three topics emerged with the same high level of importance and weighting between the sub-regions and these are listed below in order of priority: 1. Evidence-based interventions: Services should be developed, adapted and provided based on

an analysis of what works for which person, or for what level of autism, and on realities and concrete experiences. This is critical for addressing the needs of persons with autism, their families and carers in a meaningful and sustainable manner. This aspect would also include a cost-benefit analysis of the services being provided.

2. Access to regular medical care: Concerns were raised that persons with autism may be provided with special health and medical services, but that regular medical care, such as dental check-ups and interventions and eye-sight check-ups, would not always be included or even considered.

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Training of professionals, use of visual aids to inform people with ASD on procedures and increased accessibility to regular medical and health care would help to improve this situation.

3. Lifelong service provision: ASD is a very broad spectrum of disorders and individuals have a wide range of abilities and disabilities which may also change over time, particularly between child- and adulthood. Therefore, service provision needs to be planned to address varying needs, expectations and requirements over the lifespan of the individual and according to individual capacities, including for example, employment services and higher levels of social inclusion.

Common areas Other service provision areas or related issues identified by both sub-regional groups are listed below and bear similar weighting and priority levels: • the need to ensure that service provision is socially inclusive and also addresses inequalities, for

example, between geographical locations (rural/urban), for ethnic minorities, vulnerable communities, income inequalities, etc.;

• the need to ensure close collaboration and coordination between different service providers, for example, health, education and social welfare, and to establish multi-disciplinary teams with expertise in service provision for persons with autism, their families and carers;

• the need to establish guidelines on minimum standards of service provision, including at European level, and to develop relevant regulation and accreditation of services;

• the need to provide guidance for parents about relevant services and service options, including lists of services at local and national level and their effectiveness; Also, training in ASD behaviour management for families and parents would help enhance their quality of life.

• the need to develop and implement specialised training programmes for teachers, classroom assistants, family doctors, paediatricians, therapists, and all other professionals who interact with persons with autism – this could include the TEACCH training programme.5

Sub-regional considerations There were also a number of issues related to service provision that were identified separately by the sub-regional groups which are listed below and will need to be taken into consideration when establishing sub-regional priorities for research within the overall EU public health strategy on autism. Central and Eastern Europe • providing services related to early diagnosis and interventions; there is an urgent need to match

these services so that there are not children being diagnosed with nothing on offer for them. • promoting a shift from institutional care to community integration (this issue was also highlighted

by the panel of experts who emphasised the importance of independent living for persons with autism ).

Western Europe • ensuring government support to develop and provide services for parents’ associations; • developing guidelines for central and local government and relevant departments on service

provision. The sub-regional group for Western Europe also highlighted the various training needs of different stakeholder groups, including parents’ associations, and felt that costs and arrangements could be streamlined and reduced by providing programmes on a sub-regional or regional basis to reach larger numbers of beneficiaries. This proposal would need to be analysed in terms of issues such as language and costs related to travel and accommodation for residential training courses, but there could be potential economies of scale and this would also enhance networking and information exchange. The group also felt that it would be important to conduct a training needs analysis of the different stakeholder groups and to examine all aspects of needs, for example, including fund-raising capacities of parents’ associations.

5 TEACCH: Treatment and education of autistic and related communication handicapped children.

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Additional comments There were several additional comments of note from the meeting of the panel of experts and in responses to the online surveys which are raised in this section for further consideration. The panel of experts made the following recommendations: • that there should be an increase of specialised public intervention centres; • that there needs to be an established measurement of quality of life to assist development and

improvement of services and to be able to monitor and evaluate achieved goals of individuals; • that there should be improved services for adult diagnosis of autism; • that there should more public early screening programmes; • that there should be a focus on preventive programmes on mental health problems through social

education approaches; • that, in general, there should be shorter waiting lists for services for persons with autism , their

families and carers; • that there should be greater support for inclusive education programmes and methodologies; • that detailed protocols should be established for service referrals; • that surveillance should be included as a key factor in service planning in local settings. Further proposals from the pilot selection of responses to the online survey include: • establishment of networks of relevant professionals, for example, child psychiatry units, teachers,

etc.; • creation and promotion of respite care services; • ensuring individualised provision of services; • provision of mental health services for families; • establishment of appropriate protocols for non-specialised practitioners. An important challenge on developing the heading of service provision in a European public health strategy on autism will be to establish coherence and priorities. It will not be possible to address all needs and expectations as there are simply so many and they are so varied. In addition, the costs to government will be significant which will require an introduction and improvement of services over a specific timeline which will need to be discussed and agreed by all stakeholders, including persons with autism themselves, and at national and regional level. Given the level of linkages between awareness-raising and service provision, it would also be important to take account of these in prioritising action.

Research Participants of the sub-regional and panel of experts meetings were in full agreement on the need for more and better research, emphasising that it should be scientific and rigorous, with appropriate use of randomised controlled trials and that any research should have focus on practical and policy implications. All stakeholder groups would like to see the development of a more secure foundation of evidence-based knowledge and would also like to ensure that research would be more inclusive of the different stakeholder groups, in particular to involve parents, individuals with autism and their organisations. Given the different stages of development of health, scientific and research systems and structures, as well as varying degrees of understanding and knowledge of autism between countries, it was not surprising that the sub-regional workshops identified different areas of research and had different priorities. This will have an impact on the section on research in an EU public health strategy on autism and will require flexibility and room for modification and adaptation to address these national and sub-regional differences.

Priorities Reviewing the outcomes of the discussions by the two sub-regional meetings on the area of research, three topics emerged with the same high level of importance and weighting between the sub-regions and these are listed below in order of priority: 1. Evidence-based interventions: There are significant disparities in the ways in which autism is

addressed through various interventions. In terms of building the knowledge base and sharing this more widely within the EU to support effective interventions, it is important to learn more of what

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is currently being done, evaluation methods, results and sustainable impact for different sub-groups of people with ASD. Randomised controlled trials are needed to give truly robust evidence but these are very costly to run; an EU-wide website with information on existing good practices and lessons learned could contribute significantly to harmonisation of methods, interventions, knowledge and capacity-sharing.

2. Economic impact and cost-effectiveness of interventions: Little is known about the true cost of autism to families and states in terms of care, health, education, social service, etc. In many countries, families are forced to bear the brunt of costs due to inadequate knowledge of autism, that it might not be included in relevant public services for support and that health insurances might not recognise it as a legitimate health issue. In addition, understanding the true cost impact of autism on society and the cost-effectiveness of different interventions will contribute to awareness and advocacy efforts.

3. Genetics: There have been significant advances in the role of genetics in the aetiology of autism but this area needs further investigation in terms of large, epidemiological studies which include genetic data to establish conclusive evidence of the relationship between genetic and environmental aetiological factors and the genetic variation among different sub-types.

Common areas Other research areas identified by both sub-regional groups are listed below and bear the same weighting and priority levels: • neurobiology (neuroscience) and early biomarkers which would link to the area of genetic

research; • co-morbidities, for example, epilepsy and gastrointestinal disorders, where it is important to

understand what would be helpful to improve support and care; • the use of drugs in interventions on autism, throughout the lifespan and among different subtypes,

requires further investigation. In terms of taking account of the European perspective of promoting, conducting and following up research, both groups agreed on the importance of translating research and other instruments into different languages to facilitate national implementation and that studies should be coordinated where possible either at regional or national level. These comments indicate a clear need for a strong European Autism Public Health Alliance. In addition, all stakeholders expressed significant concern on the lack of support and funding for research into autism and called for specific research funding to be made available at all levels. There was also a call for research to link closely into the work of advocacy and support groups and organisations to strengthen their activities and capacities to bring about change. It is also essential to ensure strong links between the research community, service providers and policy makers.

Sub-regional considerations There were also a number of research areas identified separately by the sub-regional groups which are listed below and will need to be taken into consideration when establishing sub-regional priorities for research within the overall EU public health strategy on autism. Central and Eastern Europe • early screening and diagnosis, which can also link into interventions research, highlighted as one

of the top three research priorities; • quality of life of people with autism; • phenotypes and sub-groups of people with autism - this area was also raised in responses to the

online survey. In addition, the Central and East European sub-regional group is interested in looking more closely at the level and impact of links between the scientific community and parents’ groups and is also concerned at the lack of research capacity within some countries in the sub-region, calling for capacity-building programmes to address this.

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Western Europe • typical development of autism; • autism in adults; • environmental risk factors; • non-evidence based treatments, e.g. diet-based, vitamins, packing (in France)6 etc. The sub-regional group for Western Europe is also interested in the development of guidelines to support research and to map existing public health research structures. In addition, the group felt it was crucial to use existing research and autism networks for new studies to avoid duplication of effort and resources and also to consolidate existing expertise, capacity and knowledge resources.

Additional comments There were several additional comments of note in responses to the online surveys which are raised in this section for further consideration. Some respondents feel that the issue of definitions of ASD is missing in some national contexts and needs to be addressed. In addition, respondents highlighted the need to research the role of the Measles, Mumps and Rubella (MMR) vaccine – this indicates that better communication of the results of research studies is needed to inform stakeholders and the general public, since several epidemiological studies have already shown that there is no link between the MMR vaccine and autism. It would also be important to initiate longitudinal studies of ASD, assessing needs and expectations and how these have been addressed or not by the state or other services and society in general.

Awareness and Advocacy There is a clear need for accurate and accessible information on autism to be made available across Europe and in all national languages to ensure that no populations are excluded from the knowledge-base. There has been compelling evidence collected during the sub-regional meetings to suggest that where strong advocacy groups of parents and professionals exist and co-operate, they can have a vital role in the preparation for prevalence studies, then use prevalence information to lobby national governments to develop appropriate policies and programmes for autism. One of the main objectives of awareness-raising should be to contribute to sustainable improvements in the quality of life of people living with autism. This would be helped by society having a better understanding of autism to influence attitudes and behaviour and improve tolerance. However, it needs to be kept in mind that increasing public awareness is a lengthy process requiring considerable effort and resources. The issue of raising awareness on autism is a cross-cutting issue, being crucial for each of the stakeholder groups and in terms of how it links into each of the other four major headings of the autism public health strategy. Research is crucial in developing awareness-raising strategies and materials and, in turn, influences policy and services development. It is also crucial in terms of epidemiology and building the capacity of professionals in terms of diagnosis, treatment and registries to measure prevalence. For example, in terms of early diagnosis, it is vital that parents and guardians are aware of possible early indicators of autism in their children to ensure that appropriate diagnosis and intervention can be initiated as early as possible in the child’s life. Early diagnosis enhances the development of affected children, but requires parents being informed and aware of what to look out for and for medical staff to be informed and trained in terms of early responses. In addition, public health systems require the capacity and resources to be able to intervene appropriately. Everyone should know more about autism and come to understand it better. This general understanding is vital in terms of society being able to play its role in the education and rehabilitation process. One of the most potentially distressing aspects for any parents whose child may be affected by autism is not knowing what is happening, what to do and to whom they can turn in their time of need. Again, public awareness campaigns can offer support to parents, families and children in helping them to understand their children’s disorders and meeting other parents, individuals and organisations for support, services and information. In many cases, meeting others and talking to them about hopes, fears, problems, and so on, can be enough to provide some level of reassurance. Parents and local

6 A Consensus Statement (“Against Le Packing”), which had been discussed during the sub-regional meeting in Mallorca, was subsequently published as a Letter to the Editor in the Journal of the American Academy of Child and Adolescent Psychiatry (Feb 2011).

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advocates should also be informed and trained in understanding and accessing systems of support whether these be charitable or statutory. It was striking, but not unusual, that the needs and expectations of the two sub-regional groups in the area of awareness-raising were at almost completely different levels and focusing on different issues. Given the level of scientific and health service development in Western Europe and an already established understanding of autism, including policy and national action plan development in some countries as well as highly active parents’ associations, it is evident that awareness-raising priorities will be at a higher strategic level. However, the outcome of discussions on awareness-raising in the Central and East European sub-regional group point to fundamental needs to inform the general population and professionals and to contribute to policy development and national health action plans. An interesting issue for consideration which was raised during discussions of the Central and East European sub-regional group meeting was the importance of having public services in place for those living with autism before proceeding too far in awareness-raising activities. In the development of knowledge management strategies on autism, there will also need to be consideration of different methods of dissemination and how to target different stakeholder groups most effectively and efficiently. For example, the Central and East European sub-regional group discussed the importance of disseminating information through the media and internet, including social networking channels. This area will need to be included in the European public health strategy on autism and should map existing knowledge networks on autism across Europe and seek to enhance coordination, consolidation and expansion of these.

Priorities Reviewing the outcomes of the discussions by the two sub-regional meetings on the area of awareness-raising, only one broad topic emerged with the same high level of importance and weighting between the sub-regions: 1. Targeted awareness-raising: Programmes and materials on autism would need to be adapted to

specific target groups based on an assessment of their needs and expectations. These would include but are not limited to: professionals in all stakeholder groups, for example, in health and medical systems, research, social services, alternative health care, etc.; policy-makers; parents and children; students and the general public.

Common areas Both sub-regional groups highlighted the importance and usefulness of developing meaningful knowledge management strategies to ensure widespread and comprehensive dissemination of research outcomes, good practices and lessons learned to key stakeholder groups, particularly professionals and parents. It would be important that knowledge management strategies also target policy makers and the private sector, such as pharmaceutical companies, for which the outcome of research could be crucial. The Central and East European sub-regional group suggested using stories of real individuals with autism and situations that can either inspire or inform others, for example, social integration, workplace achievements, and so on. Both groups agreed on the importance of involving self-advocates in awareness and advocacy work and linking this to policy development. Both sub-regional groups made reference in different ways to the need to establish a common European identity of the EU public health strategy on autism. The Central and East European sub-regional group recommended developing a common logo and the Western sub-regional group recommended establishing a European Year of Autism.

Sub-regional considerations There were also a number of awareness-raising areas identified separately by the sub-regional groups which are listed below and which will need to be taken into consideration within the overall EU public health strategy on autism.

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Central and Eastern Europe • using awareness-raising to confront stigma which is particularly important given the challenges

that those living with autism face in terms of social integration due to widespread lack of awareness and understanding;

• building and strengthening parents’ associations to underpin and promote national awareness-raising activities.

In addition, the Central and East European sub-regional group is interested in how awareness-raising and advocacy can contribute to the development of national policies and strategies. Western Europe • wide dissemination of early warning signs of autism; • prevalence of autism; • informing society in general to foster the development of social skills for the general population

when they interact with individuals with autism; • promoting awareness of not only children, but also of adults with autism. The sub-regional group for Western Europe also highlighted the need to monitor awareness of autism among the different stakeholder groups and society in general. This would require baseline surveys in each country to be able to keep track of progress, monitor what works well and less well and, therefore, adapt and improve knowledge management strategies and activities. It would also ensure that autism knowledge databases would be updated and maintained at national and regional level.

Additional comments There were several additional comments of note from the meeting of the panel of experts and in responses to the online surveys which are raised in this section for further consideration. It was felt that the issue of coordination of awareness-raising and advocacy was a key consideration at both national and regional level. This would help in improving the quality of knowledge management and avoiding duplication of effort and resources. In addition, knowledge management should also include capacity-building to ensure that information leads to enhanced skills among the different stakeholder groups. It would also be important to build the lobbying capacities of relevant stakeholder groups, particularly parents’ associations and other non-governmental organisations, to facilitate their meaningful participation in national policy and regional strategy development. The panel of experts underlined the importance of strong and effective networks of parents’ associations and the need to ensure permanent contact between relevant stakeholder groups. Comments arising from the online survey included an important reference to the need to include health insurance companies among the stakeholder groups. This will facilitate the inclusion of autism as a recognised health issue for insurance coverage and to engage the health insurance companies in advocacy efforts on policy and national action plans. In addition, it is vital to keep in mind in all awareness-raising and advocacy efforts on autism that persons with autism have fundamental rights as all people do, including the right to be listened to and to be able to convey their needs, expectations and concerns to the different stakeholder groups. Finally, it was commented that there is still a big gap between the quality of information available and the actual implementation of this knowledge. Clearly, there needs to be considerable focus on all aspects of knowledge management.

Policy Since 2005, ASD has been included in both the categories ‘Rare Diseases’ and ‘Major and Chronic Diseases’ by DG-SANCO in the European Commission (EC). Although some conditions or syndromes within the autism spectrum can be categorised as rare diseases, there is an argument for no longer categorising ASD as such. Indeed, the public health burden of these disorders is now a considerable one. As early as 1996, the European Parliament launched an official declaration in which it urged the EC to fully support any effort and project to develop the rights of people with autism. The Charter of Rights of Persons with Autism was adopted as a Written Declaration by the European Parliament and declares that people with autism “… should share the same rights and privileges enjoyed by all of the European population where such are appropriate and in the best interests of the person with autism. These rights should be enhanced, protected and enforce by appropriate legislation in each state …” and goes on to list a number of fundamental rights. The Welsh Assembly in the UK has taken a lead role in showing what governments could do and, in 2008 launched a 10-year ‘ASD Strategic Action Plan for Wales’. This action plan covers all ages of the population and includes:

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• the appointment of a national implementation manager; • the recruitment of lead co-ordinators for autism in each of the 22 local authorities in Wales; • extensive training of a range of health, social care and education and commissioning

practitioners; • awareness-raising work with related areas including mental health, the criminal justice system

and the general public. Governments have a duty to enshrine the rights of persons with autism in law, provide guidelines on good practice, monitor the provision for persons with autism and take steps to harmonise their policies with one another. This section on policy development is central to the overall objective of establishing a European public health strategy on autism.

Priorities Reviewing the outcomes of the discussions by the two sub-regional meetings on policy development, four issues emerged with the same high level of importance and weighting between the sub-regions and these are listed below in order of priority: 1. The need to develop an appropriate legal framework for services; 2. The need to develop EU guidelines on ASD and to support the development of national plans of

action – ultimately to contribute to the development of proposals of key political documents shaping regional and national policies on autism, including an EU Communication, Recommendation of the Council of Ministers and a European Parliament Recommendation;

3. The importance of an evidence-base to drive policy development; the need to reference existing charters for people with autism in the policy development process, for example, those of the European Parliament, United Nations, and others. There is also an important report due for publication soon by the Committee of Experts of the Council of Europe concerning inclusion and education of children and young persons with ASD. The recommendations of the Committee have been ratified by 47 countries.

Common areas An additional issue related to policy development identified by both sub-regional groups was the importance of research into autism informing policy development. In addition, both groups highlighted the need to maintain political pressure at EU level to support the development of a European public health strategy on autism.

Sub-regional considerations The Central and East European sub-regional group also emphasised the importance of all stakeholders, including persons with autism, their families and carers, participating in the political process of policy development. This would require a certain level of capacity-building and support to empower the different stakeholders to be able to participate meaningfully. In addition, this sub-regional group noted the importance of all stakeholder groups applying political pressure at the EU level to ensure that autism would be included in FP8 and the 3rd EU Health Programme

Additional comments The panel of experts also highlighted the need for political lobbying activities to be coordinated and this is addressed through the eapha approach, further reinforcing the importance of building eapha. In addition, the panel noted that policy development should be coherent across all service areas related to autism, including health, education, social services, research, and so on. Among the additional comments and proposals from the pilot selection of responses to the online survey were: • in the case of the UK, it was noted that there is legal protection afforded to children with autism by

the government’s Special Education Needs (SEN) Code of Practice, but the code should be simplified and subject to independent assessments – the SEN Code of Practice could contribute to models of good practice within the framework of service provision and policy development;

• the need to ensure that persons with autism are not excluded from attending state schools; • the establishment of good quality professional structures;

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• the inclusion of social welfare benefits; • the need to ensure full government commitment to policy development and reform and that there

is the political willingness and resources to implement policies; • the need to ensure that policies reflect reality rather than theoretical perspectives; • the need to accompany policy development and reform with improved implementation and follow-

up to existing legislation that would benefit persons with autism, their families and carers.

Epidemiology Studying patterns of health and illness and associated factors of autism at the population level has to be addressed significantly and urgently, particularly study design, data collection, statistical analysis, documentation of results and publication. It is vital that research and information is shared between medical and health practitioners and researchers to ensure that appropriate responses can be developed through public health systems, at national and regional level. This is clearly not a straightforward matter in a region as large and diverse as Europe where there are significant differences between countries in terms of standards and development in public health systems and services, language, capacities, and so on. When considering the issue of public health at European level and looking at trends and indicators, it is vital to work with data that are comparable which underlines the need for consistency, coherence and reliability in measurement mechanisms and indicators. One of the major outputs of the EAIS project was the development of a protocol to obtain valid information on prevalence which is currently being used in a prevalence study in Ireland. The panel of experts and the sub-regional meetings highlighted the need to address early detection and diagnosis and management of data systems to support surveillance in order to obtain high quality data on prevalence, assess services needs and expectations and contribute to widespread awareness of autism among all stakeholder groups and society in general. The strong correlation between the outcomes of the EAIS project, the panel of experts and the sub-regional groups emphasised the importance of continuing high-level collaboration of experts in the field of autism epidemiology to ensure that momentum is not lost.

Priorities Reviewing the outcomes of the discussions by the two sub-regional meetings in the area of research, one topic emerged with the same high level of importance and weighting between the sub-regions and has been referred to extensively above, namely, the need for prevalence studies on autism that are accompanied by guidelines and a harmonised methodology. It would be useful in this respect to review the findings of the Irish prevalence study and prepare recommendations for urgent next steps. It would also be important to focus on the establishment of “Centres of Excellence on Autism” at national and regional level.

Common areas An additional issue related to epidemiology identified by both sub-regional groups was the need for early screening and diagnosis. Early and intensive education can help children with autism to grow and learn new skills. Prognosis is greatly improved if a child is placed into an intense and highly structured educational programme by age two or three. Earlier identification of autism could increase the effectiveness of treatment. This links in very closely to the issue of awareness to assist early diagnosis, not only of health professionals, but also parents so that they are aware of early warning signs to support a rapid and timely response. It also ties into service provision as health services require relevant training in early diagnosis and to be able to refer children to vital support services, not only in the area of health but in other key areas, such as education and social welfare. Early diagnosis is crucial but should be built on the development of the vital level of services needed by persons with autism, their families and carers as they are inter-dependent. Another issue was that of longitudinal studies to study developmental trends across the life span and to facilitate time trends measurement.

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Sub-regional considerations The Western Europe sub-regional group also identified the need for simple comparable registries, not necessarily across the EU, but in several selected locations in order to maintain a reasonable cost level while taking into account the diversity of the region.

Additional comments The panel of experts also highlighted the need for generalised screening for autism, registries and information systems, longitudinal/cross-sectional studies of outcomes and their relation to interventions and prevalence studies, further reinforcing the importance of these activities. The panel also emphasised the importance of monitoring the financial impact of autism, not only at national and regional level, but also at global level. This would further strengthen lobbying efforts for appropriate and adequate public health responses. The panel underscored the need to ensure quality in activities related to epidemiology and recommended using ICD-10 and ICD-11, when they are ready, in public health information systems. It also made reference to the need to establish and maintain a system of “pharmaco-surveillance”. Among the additional comments and proposals from the pilot selection of responses to the online survey were: • the need to reduce bureaucratic procedures in terms of interventions; • the need to improve record-keeping; • the need to develop compatible DSM or ICD-based databases for health, social and educational

systems; • the need to carry out cohort studies.

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Conclusions and recommendations for the European Autism Action 2020 plan

Findings, Recommendations and Responsibilities

‘In my end is my beginning.’ (T.S. Eliot) The three conferences, held in Luxembourg, Budapest and Majorca during 2010, together with wide-ranging consultation on the initial report of the Third Panel of Experts (Annex 1) have provided a wealth of advice and guidance for all who are concerned to promote the idea of a ten-year strategic public health plan: European Autism Action 2020.

Findings The first finding to emerge from these consultations and discussions is that the project to develop a public health policy for autism across Europe is desirable, worthwhile and timely. We have heard two different and equally important arguments in favour of this conclusion: one based on equity, the other on economy. On the one hand, it is clearly not fair to autistic people, their families and carers, that the provision of support across many parts of Europe is far from excellent, and in many places not even good enough to meet their needs. On the other, it is argued that it will provide a more economic deployment of resources to develop a coherent strategic public health plan for autism, than to fail to do so. However, while this second argument seems plausible and is widely believed to be true, we cannot yet present it as an evidence-based conclusion. We need more research. The second finding confirms the appropriateness of the analysis of a public health strategy into the five strands of service, research, awareness, policy and epidemiology. These five strands make up a cascade: awareness engenders systematic monitoring and data-collection; the weight of numbers coupled with the power of advocacy will promote national (and EC) policies; these in turn will require the provision of services which are both good enough and also practise continuous improvement so as to aspire to excellence; all of this will produce a felt need for high-quality scientific research – which will in turn provide the evidence-base for further development on the other four antecedent strands. The third finding recognises the diversity of the European family of nations. Some have made considerable progress towards the development of a coherent national strategy for autism; others are only just beginning to address the challenge. A strategy for autism across Europe will need to be sensitive to national difference; as a first step for example, it may prove useful to establish a ‘good enough’ baseline for all to reach in a few years, while at the same time initiating a debate about what excellence might look like – and encouraging the more advanced nations to make this their objective. The fourth finding identifies the major divisions of responsibility between: people with ASD, their families and carers, professionals with responsibility for health, education or policy-making, national governments, and the EU itself. No coherent strategy can be designed without seeking to answer, if only provisionally, the hard question: who should do what by when?

Recommendations Each of the three conferences agreed both a ‘long list’ of what needs to be done and a ‘short list’ of the most urgent and most important items. Taken together, they provide a valuable first draft of an agenda for the ten-year strategic public health plan. It is unrealistic to expect everything to be tackled at once. This report focuses on what is most important and/or what is most urgent of all the proposals we have received.

Services All three conferences stressed the need for the development of a model framework for services, so that the nations of Europe could reach agreement on the essentials of good practice and (having achieved that) start to aspire towards best practice. There is an immediate need in many countries for help with the training of carers and professionals involved with autism. While most nations have begun to recognise the challenge of childhood autism, and make some provision for it, autistic adults are largely ignored across many parts of Europe; this also needs immediate attention. Services

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should be developed on quality of life models with person-centred planning, covering the life span. Services should provide comprehensive and longitudinal support. Accordingly, we recommend that:

1. The upcoming European Commission DG SANCO Panel of Experts Meeting in 2011 should bring together professionals associated with ASD to design a coherent model framework for broad service provision (including training).

2. eapha, Autism Europe and Autism Speaks should take responsibility for providing an exchange of information about local training needs and high-quality training provision for parents, carers and professionals to encourage the dissemination of good practice.

3. All the nations of Europe should review their provision for adults with ASD and plan good care and support.

Research Systematic study of autism began to develop after the Second World War, but inevitably mistakes were made (such as Bruno Bettelheim’s theory of ‘cold mothers’): no doubt they are still being made. Research into autism is still in its early stages. The fundamental knowledge-base is still being established – while the need for services is immediate. All three conferences were united in emphasising the need for more research, but equally united in their demand that such research must be scientific and rigorous, with appropriate use of randomised controlled trials. They wanted to see the development of a more secure foundation of evidence-based knowledge. In particular, they called for two major research studies: into alternative treatments, and the value of early diagnosis (enabling early intervention). Research must be focused on intervention outcomes that will benefit people with ASD needs; this implies more coordination among different research fields. Research appears to have established that the causes of autism are genetic. Nonetheless, environmental factors may play a part in triggering, exacerbating or mitigating the condition. These are fertile fields for further research. No doubt, more needs to be done. But the conferences felt that one particular area demanded more attention: the question of co-morbidities. For example, autistic people have a higher likelihood of developing epilepsy than the rest of the population. Correlations like this need to be understood, not least so that better support can be provided for people with autism, their families and carers. Accordingly, we recommend that:

4. The European Commission DG Research should make a specific call for proposals on the causes of ASD and encourage researchers to use and link with open data resources in the USA.

5. The research community should conduct strategic and comparative studies of various interventions and treatments.

6. Researchers should calculate the economic value of ‘early diagnosis & early intervention’. 7. There should be more research into the causes and treatments of co-morbidities in ASD.

Awareness and Advocacy There is a clear need for accurate and accessible information on autism to be made available across Europe, both in English, and in the other major and minor languages of Europe so that no-one is excluded from the knowledge-base. This will require a good deal of local effort and initiative to ensure that good information is accurately translated and disseminated in all nations. We received compelling evidence to suggest that where strong advocacy groups of parents and professionals exist and co-operate, they are able, first, to collect prevalence data, and then to use this to persuade national governments to develop appropriate polices for autism.

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Accordingly, we recommend that:

8. In each nation both parents and professionals organise powerful advocacy groups to co-operate (a) to provide accessible and accurate information in the local languages, and (b) to create political pressure on national governments to develop coherent national policies for autism.

9. European autism agencies organise and lead on a European awareness campaign on ASD.

Policy The case for political action to provide for autistic people, their families and carers depends equally on arguments derived from equity and economy. As long ago as 1996 the Charter of Rights of Persons with Autism was adopted as a Written Declaration by the European Parliament. It declares that people with autism ‘should share the same rights and privileges enjoyed by all of the European population where such are appropriate and in the best interests of the person with autism. These rights should be enhanced, protected and enforced by appropriate legislation in each state’, and goes on to list a number of fundamental rights. Governments have a duty to enshrine these rights in law, provide guidelines on good practice, monitor the provision for autistic people, and take steps to harmonise their policies with one another. In particular, we recognise a need for systematic study of the argument from economy. Is it true, as we believe, that failing to provide adequately for autism will prove more costly in the long run than doing the right thing? Accordingly, we recommend that:

10. Each member nation of the EU should develop a national strategy for autism, seeking to implement the 1996 Charter of Rights, and make legislative and mandatory provision for the support services needed by autistic people, their families and carers.

11. The EC should sponsor research to establish whether or not it is more economical in the

longer run to make appropriate provision for people with autism, than to fail to do so.

12. Autism organisations should continue to press for an EU Communication, and EU Council and Parliament Recommendation, on ASD - as well as seeking the support of one of the EU trios of Presidency in declaring ASD as a health priority.

Epidemiology All three conferences were united in the belief that we need systematic prevalence studies across Europe. Current best estimates based on studies in the UK and elsewhere suggest that about 1 in a 100 people in any large population are autistic. Some estimates suggest an even higher figure. It is urgently necessary to test these figures in other nations and in due course, provide accurate prevalence data across the whole of Europe. This will require agreement on a common basis of measurement. Since this kind of research is difficult and costly, we suggest that a start be made with a sampling approach across a relatively small number of diverse nations. The work that underlies this report has provided a snapshot of ‘provision and needs’ for autism across Europe in 2010. Inevitably, the picture is changing as it is captured. Therefore, we suggest that steps be taken to repeat our survey not later than 2015. Accordingly we recommend that:

13. Collaborative action to be taken by the research community to study the prevalence of autism across Europe: as a first step a sampling approach should be used to collect data from a relatively small, but diverse, group of nations.

In addition, we recommend that:

14. A second survey of public health and ASD across European nations should be undertaken by the European Commission not later than 2014 and be compared with the findings of this report.

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The findings and recommendations in this report were presented at the European Autism Action Conference (Autism2010) in Dublin on 29 November 2010. The programme and a brief report of the Conference are presented in Annex 2.

Many of the ideas and recommendations in this report were broadly considered in an initiative that was written by eapha in early 2010, namely the Public Health plan for Autism Spectrum Disorders in Europe (PHASDE) project. The next step will be to refine this initiative using the findings and recommendations of this report and seek funding for its implementation.

The timeline illustrated overleaf indicates where we are at present, how we have arrived at this point and how we expect this work to unfold in the future. This timeline was presented to delegates in a brochure at the Sub-regional Meetings and at the Dublin Conference (Annex 5).

Timeline

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Responsibilities One of the principles underlying the formation of the EU is subsidiarity. This means the location of responsibility as far down the chain of command as possible, consistent with effective action. Parents should encourage and enable their children to be responsible for their own lives, professionals should encourage and enable parents to be responsible for their families; governments should encourage and enable professionals to take responsibility for observing good practice – and aspiring to best practice; the EU should encourage and enable the nations of Europe to govern and manage themselves. That said, the principle of subsidiarity implies its converse: supersidiarity. If efficiency and effectiveness requires a matter to be dealt with at a higher level, then the responsibility should be located appropriately. For example, there is a case for arguing that defence and foreign policy should now be located at the highest level (with the EU) rather than at the national level. A similar case could be made for strategic research. In the light of such considerations, who should do what by when – to help develop a strategic health plan for Europe? As far as possible, autistic people should be encouraged and enabled to take responsibility for their own lives. When and where they need help, families and carers seek to provide it, supported (if necessary) by professionals. Governments have a role to ensure that good practice is followed, by means of legislation and budgetary provision. The EU, perhaps, has a role to monitor the efficiency and effectiveness of these arrangements. None of these things will happen without an assertion of political will, accompanied by popular support and directed through decisive leadership. The translation of aspiration into reality cannot be achieved by governments alone. It requires the co-operation, effort and enterprise of many agencies and all parts of society. But political leadership can shape the general will. Progress is possible. Nations have learned to free slaves, end child labour and extend the franchise to women. We can decide to stop neglecting the needs of autistic people, and start to provide adequately for them. We can expect a range of economic, social and personal benefits, if we do so. But these are not the most compelling reasons for action. We should act because it is the right thing to do.

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Annexes

Annex 1: Panel of Experts report

Annex 2: Programmes and Reports from two Sub-Regional Meetings and Dublin Conference

Annex 3: eapha strategy document

Annex 4: Countries Report Annex 5: Brochure and folder presented to delegates at Sub-Regional

Meetings and Dublin Conference.

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Annex 1: Panel of Experts Report

Autism Spectrum Disorder - A Draft Agenda for Europe

Report on the Third Panel of Experts on Autism Spectrum Disorder

A meeting hosted by the European Commission Directorate for Health and Consumers (DG-SANCO), Jean Monnet House, Luxembourg, 11-12 March, 2010.

Introduction Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition that affects approximately 1 in every 100 individuals in a population (according to reports from the UK in 2006 and 2009). Those affected by autism lie along a spectrum ranging from severe autism, as originally described by Kanner in 1943, through to the more subtle but often equally challenging behaviours of Asperger syndrome and Pervasive Developmental Disorder not otherwise specified (PDDnos). Although ASD is not as yet fully understood, some things are generally accepted: ASD is caused by a mixture of predominantly genetic but also environmental factors; symptoms of ASD are present from as early as 12 months of age; the best outcomes for children are often achieved through early diagnosis and early intervention; few countries have as yet developed a national strategy or legislation and there is widespread ignorance about ASD within broader society. ASD does not only affect the individual and their families but it also impacts on society at large, possibly having direct relevance to roughly 5% of any population and coming with substantial economic costs (approximately €32bn annually to the UK economy). This report represents the completion of the first stage of a long-term project: the design and implementation of coherent recommendations for a public health policy across the EU on ASD. This report will offer a summary account of the meeting of the Third Panel of Experts on ASD, held in Luxembourg on 11-12 March 2010, and also provides the basis for further regional conferences in Budapest and Majorca to be held in September 2010, before the strategic public health plan for autism is presented at an event to be held in Dublin in November 2010. The Luxembourg meeting identified that there must be at least three dimensions to any public health policy addressing ASD in the EU. These are a policy dimension, a responsibility dimension, and a national dimension. The first dimension has five major strands: • research; • provision of services (health and educational); • active development of ASD policies; • awareness and advocacy; • surveillance and monitoring (i.e. collecting data to monitor changes in the population). For each strand, consideration needs to be given to the second dimension, which is where the primary responsibility lies, and we identify five potential leaders: • people with ASD; • their families and carers; • health, education and policy professionals; • national governments; • the EU itself. The third dimension is the diversity of the 27 EU member states. Inevitably, each country differs in their approaches to ASD and the policies and services they have for individuals on the spectrum. There are also differences between countries in terms of priorities for, and requirements from, any public health policy for ASD across Europe. Below is a summary of the content and outcomes of the Third Panel of Experts Meeting on Autism (see Appendix 1 for the meeting agenda).

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Third Panel of Experts Meeting on Autism Spectrum Disorder The Third Panel of Experts meeting on ASD was a vital opportunity for many voices from the European community to be heard and for opinions to be shared as to how best meet the goal of improving the lives and opportunities of individuals with ASD and their families.

Day 1 and Setting the Context Invitations from DG SANCO (EC’s Directorate General, Department for Health and Consumers) went to a broad range of stakeholders and there was representation from 14 European countries. The Panel of Expert’s task was to discuss a strategic direction for the continent on public health and ASD, and so delegates were selected to represent expertise in research, clinical services (health and educational), awareness and advocacy, policy, and surveillance/monitoring (e.g. data registries & epidemiology). On the first day, Mr Nick Fahy and Mr Antoni Montserrat of DG SANCO set out their commitments to ASD and a roadmap of how advances in public health and ASD should be made (an overview of DG SANCO and their commitments to ASD can be found in Appendix 2). It was made clear to those present that it is not the role of the Commission to decide on health policy, as that is the responsibility of national governments, but what must be decided upon in implementing a public health strategy is the key objectives and what is to be left for national governments to decide upon. Day 1 also included a series of presentations and discussions to “set the context” on the current landscape of ASD in Europe; to identify particular challenges and where there is an opportunity for the European community to work to its unique strengths. Professor Anthony Bailey from the University of Oxford presented on priorities and objectives for European research; Professor Tony Charman from University of London presented on the evidence base for intervention and educational provision; Dr Manuel Posada from Carlos III Institute, Madrid, summarised current autism prevalence research; Dr Michel Favre from Autisme Europe outlined the organisation’s leadership in advocacy, special initiatives and information sharing; Dr Alvaro Ramirez presented on the findings of the EC funded European Autism Information System (EAIS) and a vision for autism in Europe through the recently formed European Autism Public Health Alliance (eapha) (see Appendix 3 for further information on EAIS and eapha). From the presentations and subsequent discussion, there was a consensus that more research is needed, especially into the prevalence and causes of autism in both children and adults; there was a call for better services, especially those related to early diagnosis and intervention, as well as the support of adults and professional training. In the area of policy, there was felt to be a need for better co-ordination, the definition of minimum satisfactory standards, and the creation of a strategic plan for a European public health policy for autism. There was a strong call for steps to be taken to increase public awareness of autism, and to monitor the effects of interventions and treatments rigorously and with regard to quality of life. Also discussed was that some services available to families in Europe were neither evidence-based nor properly scrutinized.

Day 2 and the Small-Group Meetings On Day 2 of the meeting the participants were divided into four working groups to discuss strengths and weaknesses, needs and priorities, in each of the five areas of research, services, policy, awareness and advocacy, and surveillance/monitoring. There were innovative recommendations from each of the groups and the main needs and some of the priorities identified were as follows: 1. Research: more research into the evidence base of interventions and educational provision; greater use of randomised control trials; studies of aetiology including associated co-morbidities (like mental health difficulties, epilepsy and gastro-intestinal problems); more longitudinal research, especially that which follows individuals into adulthood; an increase in the number of prevalence studies and consensus over study design; increased number of studies of the economic cost of ASD to be used as part of cost-benefit arguments; application of neuroscience, molecular studies and biological research to diagnosis, treatments and educational interventions.

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2. Services: increased training in early detection and screening protocols; improved professional training in the delivery of early intervention and educational provision; consensus on European training protocols and minimum satisfactory standards in screening, intervention/education and diagnosis; prioritising services to prepare people with ASD for the workplace and the workplace for people with ASD; services to be developed specifically for the adult and ageing autism population. 3. Policy: identification and dissemination of current national legislation and policy guidelines on ASD; harmonisation of national policies towards emergent best practice; improved coordination and communication across community services (e.g. health, education and social care sectors); awareness that ASD is a lifelong condition and services should be designed accordingly. Existing policy documents, such as the European Declaration on the rights of people with autism, the UN Convention on the Rights of Persons with Disabilities and others, should be used to support development of national policies and lobbying activities. 4. Advocacy and Awareness: importance of self-advocacy and listening to the voices of individuals with ASD; improved access to high quality, evidence-based information (e.g. web-based dissemination); challenging the stigma of ASD via public awareness campaigns; increased awareness in schools to the problems of bullying; access to information and awareness raising for professionals only indirectly involved with ASD – e.g. the police and employees. 5. Surveillance and Monitoring: the need to collect accurate prevalence data; services should be continuously monitored and improved; children with ASD should be identified early and then surveyed throughout their life so they do not fall out of the system; existing national databases should be updated; provision of data ‘for the sake of data’ is an expensive luxury.

Conclusions The final session of the meeting focused on the task of identifying a shortlist of themes that came through strongly during the discussion, recognising that budgets are inevitably limited and not everything can be done at once. The following items were those themes that the panel of experts identified but the list is not exhaustive and should be regarded as a guideline to use during the consultation at the upcoming regional meetings in Budapest and Mallorca in September 2010.

Research 1) The identification of biomarkers to be included in treatment studies (e.g. using neuroimaging pre-

and post-intervention) 2) Review of the efficacy and cost-effectiveness of early intervention programmes 3) Research into the co-morbidities of ASD and appropriate treatments

Services 1) Diagnosis and support of adults with autism 2) Increased training for parents and carers 3) Needs assessments with regular reviews

Policy 1) Co-ordination of policy amongst agencies and dissemination of models of good practice 2) Agreed protocols for professional training 3) Harmonisation of national policies for autism

Advocacy 1) Recognition of the importance of self-advocacy 2) Creation and coordination of lobby groups across the EU 3) Need for accessible information for all and effective communication about autism to reduce

stigma

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Monitoring 1) Establish a unique code for ASD in national registries 2) Compatible databases and methods for prevalence 3) Prioritise what data is important to collect for surveillance It was further agreed that the principles of cost-effectiveness, rigorous research methodology and quality of life must underpin all this work, if it is to be truly effective.

Findings and Recommendations The first finding to emerge from these discussions is a consensus that the project to develop a public health policy for autism across Europe is desirable, worthwhile and timely. The second finding is the importance of exploring each one of the three dimensions detailed in the introduction: the five major strands of any public health policy; the five main contributors to the process of implementing such a policy; and the range of nations comprising the EU. The third is the importance of careful and wide-ranging consultation. Participants in the Luxembourg Panel of Experts meeting unanimously agreed that this Report should be drafted and circulated to each one of them for comment. Following receipt of these comments, the Report has been redrafted and will be posted on the website www.autism2010.eu. A consultation process involving as many stakeholder organisations as possible throughout Europe will be carried out through the website. This will ensure that stakeholders have the opportunity to comment on the report or to make a contribution concerning the strengths and needs in relation to their area of focus in their own country/region. with options to send comments or make a contribution. The final draft document will provide the input for the sub-regional meetings to be held in Eastern and Western Europe in September 2010 The final strategic public health plan with recommendations on ASD for the EU will be written during October 2010, including specific recommendations for action, and will be presented to Ministers and other delegates at the European Autism Action Conference to be held in Dublin on 29th November 2010.

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Appendix 1: Agenda, Third Panel of Experts Meeting on ASD

European Commission Health and Consumers Directorate-General

Thursday 11th March 2010

Introduction 10.00-10.15 Chairman’s opening comments and objectives for the meeting - Sir Christopher Ball 10.15-10.30 DG SANCO and a strategic vision for health in Europe - Mr Antoni Montserrat DG-

SANCO

Setting the context 10.30-11.10 European autism research: where are we now and what does the future hold? -

Professor Anthony Bailey, University of Oxford 11.10-11.50 An overview of autism prevalence research - Dr Manuel Posada, Carlos III Institute,

Madrid 11.50-12.30 Evidence based provision for individuals with autism - Professor Tony Charman,

Institute of Education, London 1.30-2.10 Autism and advocacy in Europe - Dr Michel Favre, Autisme Europe 2.10-2.50 A public health vision for autism in Europe - Dr Alvaro Ramirez, European Autism

Alliance

Outlining a public health strategy on autism for Europe 3.15-4.15 Panel Discussion: the Chairman, Antonio Montserrat and the five presenters from

‘setting the context’ will constitute a panel to lead a Q&A session on points raised from the presentations.

4.15-5.30 Roundtable discussion: Panel members will have been asked prior to the meeting to prepare a short list of specific needs and strengths in terms of autism research, services, policy, advocacy and surveillance within their country/region. A discussion will be held around these issues to identify country, regional and continent wide challenges that need to be addressed and to search for models where there are proven successes.

Friday 12th March 2010 09.30-11.00 Small group workshop: In the morning session panel members will break out into

small groups to discuss what was covered on the first day and their task is to list areas of particular need for autism in Europe around the key public health topics of research, services, policy, advocacy and surveillance. They will also be tasked to list particular objectives for Europe in the medium term (next 10 years) and a strategy for how those should be achieved.

11.00-12.30 Outlining a European public health strategy on autism: A roundtable discussion will

be held to outline a strategy for Europe over the next 10 years around the key public health areas of research, services, policy, advocacy and surveillance. Group leaders from the Small Group Workshop will feedback to the panel. Discussion will focus on the potential for using the strength and diversity of the European Union, the need for Eastern European countries to be supported in terms of increasing autism awareness and developing evidence based services, and how through defining sustainable organisational structures the European community can show international leadership and strength. The group will outline a series of recommendations, milestones and measurable objectives for a European public health strategy on autism.

12.30-1pm Conclusion and future directions: The final session will include summarising common

themes from the meeting and a strategy to communicate these to the EU and the wider community. A subcommittee of the expert panel will be identified to write up the outcomes of the meeting and to disseminate to European partners.

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Appendix 2: DG-SANCO and ASD DG SANCO is the EU’s Directorate General for Health and Consumers, and oversees health for citizens of European member states. Policies on health are typically set by the government of each member state country and although DG SANCO is in a position to draw up EU wide legislation it typically acts to pool European expertise on health, to identify and share models of best practice and to help coordinate recommendations on specific diseases or conditions. DG SANCO has a website through which information on diseases and conditions can be disseminated. Contained within this site is a very useful page on Autism Spectrum Disorders (http://ec.europa.eu/health/major_chronic_diseases/diseases/autistic/) that provides an overview of current European activities. The site also has an important section on the rights of people with ASD and their families, and in particular the vital work of Autisme Europe in bringing together European autism advocacy organisations, promoting inclusion and legislating against discrimination of people with ASD (http://www.autismeurope.org/). It has been important for autism stakeholders in Europe that EU Work Plans on ASD were included as part of implementing the programme of Community action in the field of public health (2003-2008). As part of these Work Plans the European Autism Information System (EAIS; see following section) and the European Network of Surveillance on risk factors for Autism and Cerebral Palsy (ENSACP) were funded. DG SANCO hosted two previous European Panel of Expert meetings on autism in 2006 and 2007 and in 2010 funded a conference grant “European Autism Action 2020: Working Conference on a Strategic Plan for Autism” www.autism2010.eu The final report of the EAIS project may be found on this website.

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Appendix 3: The EAIS and eapha: a vision for the future The European Autism Information System (EAIS) project was implemented in 2006, co-funded by the European Commission DG-SANCO. This project established protocols, guidelines and a network of professionals and researchers to initiate a Europe-wide information and knowledge management system for ASD. An important outcome of the EAIS project was to lay the foundations for the creation of a new sustainable network on ASD, the European Autism Public Health Alliance (eapha) http://www.eapha.eu (website under construction), as a multi-stakeholder forum to facilitate communications between and co-ordination of professional expertise in the EU on: • Early detection and diagnosis of autism • Management and monitoring of data systems (surveillance) • Prevalence and economic impact of ASD in the EU • Interventions and treatments of ASD • The ageing population with ASD • Public and professional awareness of ASD • EU policies Essentially, eapha aims to bring together the various ASD stakeholders from across Europe, comprising the five main groups below: • Individuals with ASD and their families • Organisations representing individuals with ASD, their families and carers, in different European

countries • Research and academic institutions • Professionals who work with individuals with ASD from health, education and the social care

fields, and the organizations representing these professionals • Government departments and agencies These five groups represent those who are affected by ASD and its consequences, as well as those who are seeking to identify its causes and effects, and therefore guide future treatments. In addition, they represent public bodies that are responsible for the development and provision of services. By bringing these five stakeholder groups together it is anticipated that major advances could be made to elaborate, endorse and implement an agreed regional public health approach on ASD. The process of forming a public health vision for ASD in Europe will take into account that a number of EU member States are relatively advanced in their own national policies on ASD, whilst others have very little policy at all. eapha looks forward to the involvement of the stakeholders from these countries in future discussions and to build on their experiences to provide targeted and detailed support to those most in need. The approach of eapha embraces the true spirit of the European Union.

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Appendix 4: Acknowledgements and list of participants The authors of this report would like to thank DG SANCO for sponsoring and organising this meeting and making important contributions throughout the two days. The authors would also like to thank Anna McElhinney and Abigail O’Donovan for taking notes. Our final thanks must go to all those who gave up their time and contributed as experts. These individuals are listed below: Prof Anthony Bailey, University of Oxford, UK Prof Ricardo Canal, University of Salamanca, Spain Prof Tony Charman, University of London, UK Dr Flavia Chiarotti, Istituto Superiore di Sanita', Italy Dr Ariel Como, Albanian Childrens Foundation, Albania Dr Daniel David, University of Cluj, Romania Ms Annalisa Toffano Destefanis, APAAL, Luxembourg Mr Michel Favre, Autisme Europe, Belgium Dr Konstantinos Francis, Athens University, Greece Dr Louise Gallagher, Trinity Univerity, Ireland Ms Patricia García Primo, Chiren Therapy Centre, Ireland Ms Sylvie Leisen Glesener, APAAL, Luxembourg Dr Karen Guldberg, University of Birmingham, UK Dr Gun Iversen, Helse Bergen, Haukeland University Hospital, Norway Ms Maribel Morueco Alonso, Asociación de Padres de Niños Autistas de Baleares, Spain Dr Jeremy Parr, University of Newcastle, UK Prof Antonio Persico, University Campus Bio-Medico, Italy Dr Manuel Posada de la Paz, Instituto de Salud Carlos III, Spain Prof Fritz Poustka, Goethe University, Frankfurt Dr Ian Ragan, European Brain Council, UK Prof Herbert Roeyers, Ghent University, Belgium Prof Bernadette Rogé, University of Toulouse, France Ms Kathy Sinnott, Hope Project, Ireland Prof Anthony Staines, Dublin City University, Ireland Ms Zsuzsanna Szilvasy, Hungarian Autism Society, Hungary Mr Jim Taylor, Scottish Society for Autism / Celtic Nations Autism Partnership Dr Jean-Francois Vervier, Centre Hospitalier de Luxembourg, Luxembourg Mr Kevin Whelan, Irish Autism Action, Ireland José Luis Cuesta Gómez, president of the Spanish Association of Professional on Autism (AETAPI) Report prepared by: Sir Christopher Ball Dr Simon Wallace Dr Alvaro Ramirez

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Annex 2: Programmes and Reports from two Sub-Regional Meetings and Dublin Conference

East European Sub-Regional Meeting

Programme

Monday 13th September 2010 09.00 – 09.30 Registration

Opening session 09.30 – 09.45 Welcome by Mr. Kevin Whelan, CEO, Irish Autism Action and Mr Miklós Soltész, the

State Secretary of Social Affairs from the Ministry of National Resources, Hungary

09.45 – 10.00 Chairman’s opening comments and objectives for the meeting Sir Christopher Ball, Chairman 10.00 – 10.15 DG-SANCO and a strategic vision for health in Europe Mr. Antoni Montserrat, DG-SANCO

Setting the context 10.15 – 10.45 Autism Spectrum Disorders: where are we now and what does the future hold? Prof. Patrick Bolton, Institute of Psychiatry, London, UK 10.45 – 11.00 An overview of the activities of Autism Europe Ms. Zsuzsanna Szilvasy, Autism Europe 11.00 – 11.20 Report from the 3rd Panel of Experts meeting on Autism, Luxembourg 2010

Sir Christopher Ball, Chairman

11.20 – 11.40 Coffee Break 11.40 – 12.00 The European Autism Public Health Alliance (eapha) – an introduction Dr. Alvaro Ramirez, eapha

A series of presentations from each country 12.00 – 13.00 Country representatives will have been identified prior to the meeting to collect basic

data (e.g. level of public and professional autism awareness, prevalence figures if they exist, types of services that are available for individuals on the autism spectrum, what is the typical route to diagnosis etc.) and presentations on this data will be made throughout the afternoon. Those presenting will be limited to 10 minutes each.

13.00 – 14.00 Lunch 14.00 – 15.45 A series of presentations from each country (contd.) 15.45 – 16.00 Coffee Break 16.00 – 17.00 A series of presentations from each country (contd.) 17.00 – 17.15 Chairman’s summary of the day 19.30 Depart by bus for dinner in Rosinante Restaurant

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Tuesday 14th September 2010

Small Group Workshop 09.00 – 10.30 Participants will be allocated to a small group and tasked with discussing areas of

particular need for ASD in Europe around the topics of: autism awareness; services; training; research; policies. The small groups will also list particular priorities and objectives for Europe in the medium term (next 10 years) and to formulate ideas for how those could be achieved, considering level of importance and budgetary limitations.

10.30 – 11.15 Feedback from small groups and discussions 11.15 – 11.30 Coffee Break

Large group discussion 11.30 – 12.30 Recommendations for a European public health strategy on autism

The Chairman will lead a discussion on what has been presented before and participants at the meeting will be asked to make recommendations on what they believe should be included in an outline strategy for Europe over the next 10 years around the key public health areas of research, services, policy, advocacy and surveillance. Discussion will focus on the potential for using the strength and diversity of the European Union, the need for European countries to be supported in terms of increasing autism awareness and developing evidence based services, and how through defining sustainable organisation structures the European community can show international leadership and strength. The group will outline a series of recommendations, milestones and measurable objectives for a European public health strategy on autism.

12.30 – 13.00 Conclusion and future directions 13.00 Lunch During October 2010 the final strategic document will be written and participants will be consulted on the final content. A conference will take place in Ireland on 29th November 2010 to publish the final document. This will include a plenary session, with presentations made from the Panel of Experts Meeting (Luxembourg 2010), as well as the two sub-regional meetings. The final draft of the public heath strategic plan for ASD in Europe will be presented to a high-profile audience of policy makers and stakeholders from across Europe. The conference will also be the founding conference of the European Autism Public Health Alliance (eapha) and will be an opportunity for presenting and promoting this new entity.

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East European Sub-Regional Meeting

Report The sub-regional meeting of the European Autism Action for east European countries took place in Budapest on 13th and 14th September. The host nation provided a warm and prestigious welcome with Ms Zsuzsanna Szilvásy, President of the Hungarian Autistic Society, having invited the Hungarian Secretary of State, Mr Miklós Soltész (pictured), to honour the meeting by giving the opening speech. He gave a message of hope and encouragement and spoke of the everyday challenges that are faced by people, particularly mothers of children with autism. Mr Soltész looked forward to 2011 when Hungary will assume the rotating Presidency of the EU, highlighting the family and disability as areas of priority. Mr Kevin Whelan, CEO of Irish Autism Action, the host agency of this initiative, also welcomed the group and emphasised the importance of looking at long-term solutions in autism public health issues. The gathering of representatives from autism organisations and professionals from 17 eastern European countries was expertly chaired by Sir Christopher Ball. The context for the meeting was set with a very informative and comprehensive talk by Professor Patrick Bolton of the Institute of Psychiatry, UK, entitled 'Autism Spectrum Disorders: where are we now and what does the future hold?' and a presentation on the report from the 3rd Panel of Experts on ASD meeting was given by Dr Simon Wallace of Autism Speaks. Zsuzsanna Szilvásy gave an overview of the work of Autism Europe, the organisation of which she is President-elect, and through which many of the participants were invited to the meeting. Dr Alvaro Ramirez, Chair of the European Autism Public Health Alliance (eapha), shared his vision of applying a public health framework to autism in Europe and explained how eapha has evolved and its aim to drive the strategic public health plan for autism forward over the next ten years and into the future. He emphasised the importance to eapha of full participation and ownership of this plan and its execution by stakeholders in autism. He also explained how the European Commission DG-SANCO and the Executive Agency for Health and Consumers (EAHC) have supported projects on autism spectrum disorders in Europe EAIS, ENSACP, and a series of Panel of Experts meetings as well as the European Autism Action Conference, including the sub-regional meetings. Dr Ramirez gave special thanks to Irish Autism Action, hosts of the European Autism Action Conference. There followed a series of country presentations from Hungary, Albania, Bosnia & Herzegovina, Bulgaria, Croatia, Czech Republic, Estonia, Greece, Latvia, Lithuania, Macedonia, Moldova, Poland, Romania, Slovakia, Slovenia and Ukraine. Country representatives spoke about the level of awareness, diagnostic pathway, services and prevalence where data were available. The presentations gave a really good overview of autism across Eastern Europe, which will be described in the meeting report. On the second day of the meeting, delegates worked in small discussion groups, looking at what recommendations they believe should be included in an outline strategy for Europe over the next ten years around the key public health areas of research, services, policy, advocacy and surveillance. After energetic and enthusiastic discussion and feedback from the groups, there followed a plenary session during which priorities were identified for the strategic plan. Delegates from all countries represented at the meeting offered to translate the online consultation questionnaire and several of these have already been received and made available online. This is to give a voice to everyone whose life is touched by autism spectrum disorder and would like to give their views towards making recommendations for a strategic public health plan for autism in Europe. During October, the final strategic document will be written and participants will be consulted on the final content. The European Autism Action Conference will take place on 29th November 2010 and will include presentations made from the Panel of Experts Meeting (Luxembourg 2010), as well as the two sub-regional meetings for east and west Europe. The final draft of the public heath strategic plan for ASD in Europe will be presented to a high-profile audience of policy makers and stakeholders from across Europe. The conference will also be the founding conference of the European Autism Public Health Alliance (eapha) and will be an opportunity for presenting and promoting this new entity.

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West European Sub-Regional Meeting

Programme

Thursday 23rd September 2010 09.00 – 09.30 Registration

Opening session 09.30 – 09.45 Welcome by Mr. Brian Murnane, Chair, Irish Autism Action, D. José Pérez Beites,

President of Gaspar Hauser and Mrs. Josefina Santiago , Consellera Baleares, Social Affairs, Promotion and Immigration Department.

09.45 - 10.00 Chairman’s opening comments and objectives for the meeting Sir Christopher Ball, Chairman 10.00 – 10.15 DG-SANCO and a strategic vision for health in Europe Mr. Antoni Montserrat, DG-SANCO

Setting the context 10.15 – 10.35 ASD diagnosis: Complexity and challenges in the European context

Dr. Louise Gallagher, Trinity College Dublin

10.35 – 10.50 An overview of the activites of Autism Europe Ms. Zsuzsanna Szilvasy, Autism Europe

10.50 – 11.05 Recommendations from the Council of Europe on inclusion and education of children

and young persons with ASD Ms Kari Steindal, National Autism Unit, Norway 11.05 – 11.25 Report from the 3rd Panel of Experts meeting on Autism, Luxembourg 2010

Dr Simon Wallace, Autism Speaks 11.25 – 11.40 Coffee Break 11.40 – 12.00 The European Autism Public Health Alliance (eapha) – an introduction Dr. Alvaro Ramirez, eapha

A series of presentations from each country 12.00 – 13.00 Country representatives will have been identified prior to the meeting to collect basic

data (e.g. level of public and professional autism awareness, prevalence figures if they exist, types of services that are available for individuals on the autism spectrum, what is the typical route to diagnosis etc.) and presentations on this data will be made throughout the afternoon. Those presenting will be limited to 10 minutes each.

13.00 – 14.00 Lunch 14.00 – 15.45 A series of presentations from each country (contd.) 15.45 – 16.00 Coffee Break 16.00 – 17.00 A series of presentations from each country (contd.) 17.00 – 17.30 Chairman’s summary of the day 20.00 Networking Dinner, Bahía Mediterráneo Restaurant

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Friday 24th September 2010

Small Group Workshop 09.00 – 10.30 Participants will be allocated to a small group and tasked with discussing areas of

particular need for ASD in Europe around the topics of: autism awareness; services; training; research; policies. The small groups will also list particular priorities and objectives for Europe in the medium term (next 10 years) and to formulate ideas for how those could be achieved, considering level of importance and budgetary limitations.

10.30 – 11.15 Feedback from small groups and discussions 11.15 – 11.30 Coffee Break

Large group discussion 11.30 – 12.30 Recommendations for a European public health strategy on autism

The Chairman will lead a discussion on what has been presented before and participants at the meeting will be asked to make recommendations on what they believe should be included in an outline strategy for Europe over the next 10 years around the key public health areas of research, services, policy, advocacy and surveillance. Discussion will focus on the potential for using the strength and diversity of the European Union, the need for European countries to be supported in terms of increasing autism awareness and developing evidence based services, and how through defining sustainable organisation structures the European community can show international leadership and strength. The group will outline a series of recommendations, milestones and measurable objectives for a European public health strategy on autism.

12.30 – 13.00 Conclusion and future directions

Sr. Christopher Ball, Dr. Alvaro Ramirez and Sr. Jaume Garau, Executive Senior Advisor for Social Affairs and President of Majorcan Social Affairs Institute (IMAS)

13.00 Lunch During October 2010 the final strategic document will be written and participants will be consulted on the final content. A conference will take place in Ireland on 29th November 2010 to present the final document. This will include a plenary session, with presentations made from the Panel of Experts Meeting (Luxembourg 2010), as well as the two sub-regional meetings. The final draft of the public heath strategic plan for ASD in Europe will be presented to a high-profile audience of policy makers and stakeholders from across Europe. The conference will also be the founding conference of the European Autism Public Health Alliance (eapha) and will be an opportunity for presenting and promoting this new entity.

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West European Sub-Regional Meeting

Report

The sub-regional meeting of the European Autism Action for west European countries took place in Palma de Mallorca on 23rd and 24th September. The opening of the meeting was honoured with words of welcome from Don Jose Pérez Beites, President of Gaspar Hauser, a local NGO which provides a comprehensive range of services to adults and children with ASD in Mallorca and Don Juan Manuel de la Rosa, Director General of the Balearic Government Foundation, who spoke of the local authorities’ commitment to services for autism and the need for a ‘grass roots’ focus. Mr Brian Murnane, Chair of Irish Autism Action, the host agency of this initiative, also welcomed the group and emphasised the importance of a multi-faceted approach to autism public health issues. The gathering of representatives from autism organisations and professionals from 18 western European countries was expertly chaired by Sir Christopher Ball. The context for the meeting was set by Sir Christopher’s introduction and a very informative talk by Professor Antonio Persico of the University of Rome, who heroically stepped in at the last minute when the programmed speaker was unable to travel due to industrial action. There followed a presentation by Antoni Montserrat of the European Commission DG-SANCO, who explained how the EU has supported autism-related projects in the past and the mechanisms by which it can continue to do this. However, he highlighted the need to lobby, to maintain autism as part of the Work Programme for 2011. He also emphasised the importance of the European Autism Action Conference in clarifying the public health needs for autism in Europe and lobbying for ASD to be included in the Third Health Programme 2014-2019, which will decided upon next year. A report from the 3rd Panel of Experts on ASD meeting, held in March in Luxembourg, was given by Dr Simon Wallace of Autism Speaks. Zsuzsanna Szilvásy gave an informative overview of the work of Autism Europe, the organisation of which she is President-elect, and through which many of the participants were invited to the meeting. Dr Alvaro Ramirez, Chair of the European Autism Public Health Alliance (eapha), shared his vision of applying a public health framework to autism in Europe and explained how eapha has evolved and its aim to drive the strategic public health plan for autism forward over the next ten years and into the future. He emphasised the importance to eapha of full participation and ownership of this plan and its execution by stakeholders in autism. Ms Kari Steindal, of the National Autism Unit, Norway and former Chair of the Committee of experts in the Council of Europe concerning inclusion and education of children and young persons with ASD, presented the recommendations of the Committee, which have been ratified by 47 countries. The Committee’s report will be published in the near future. Ms Steindal emphasised how these recommendations can be used to help lobby national governments. There followed a series of country presentations from Spain, Austria, Belgium, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Sweden, Switzerland and the UK. Country representatives spoke about the level of awareness, diagnostic pathway, services and prevalence where data were available. The presentations gave a very thorough overview of autism across Western Europe, which will be described in the final report. On the second day of the meeting, delegates worked in small discussion groups, looking at what recommendations they believe should be included in an outline strategy for Europe over the next ten years around the key public health areas of research, services, policy, advocacy and surveillance. After energetic and enthusiastic discussion and feedback from the groups, there was a plenary session and summing up by Sir Christopher Ball. The meeting was closed with words of thanks to Ms Maribel Morueco Alonso, Director of APNAB (Balearic Islands Association of Parents of Children with Autism) and Gaspar Hauser, who made all the local arrangements for the meeting and made the delegates feel so welcome. Thanks were also given to Rafael Ferragut Bonafé, proprietor of the Auditorium de Palma, who had very kindly given the use of the wonderful conference facilities free of charge for the meeting. Jesús Mullor, Director General of Social Services from the Mallorcan Institute

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of Social Affairs closed the meeting with words of encouragement and continued support of the Autism services in Mallorca. Delegates from many countries offered to translate the questionnaire for the online consultation process; several of these have already been received and made available online. This is to give a voice to everyone whose life is touched by autism spectrum disorder and would like to give their views towards making recommendations for a strategic public health plan for autism in Europe. During October, the final report of the sub-regional meetings and strategic document will be written and participants will be consulted on the final content. The European Autism Action Conference will take place on 29th November 2010 and will include presentations on the Panel of Experts Meeting (Luxembourg 2010), as well as the two sub-regional meetings for east and west Europe. The final draft of the public heath strategic plan for ASD in Europe will be presented to a high-profile audience of policy makers and stakeholders from across Europe. The conference will also be the founding conference of the European Autism Public Health Alliance (eapha) and will be an opportunity for presenting and promoting this new entity.

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European Autism Action Conference (Autism2010), Dublin

Programme

Monday 29th November 2010 08.30 – 09.00 Registration and coffee

09.00 – 09.15 Introduction by Sir Christopher Ball

09.15 – 09.30 Welcome by Mr. Brian Murnane, Chairperson, Irish Autism Action

09.30 – 09.45 Opening address by Minister John Moloney Minister of State for Disability Issues and Mental Health

09.45 – 10.00 Welcome by Barbara Nolan, Director of the European Commission Representation in Ireland, on behalf of Commissioner Maire Geoghegan Quinn, European Commissioner for Research, Innovation and Science

10.00 – 11.00 Keynote Address – Autism across the lifespan: where are we now and what does the

future hold? Professor Ann Le Couteur, Newcastle University 11.00 – 11.15 Coffee break

11.15 – 11.45 The light at the end of the tunnel - Jamie Reilly, a person with autism, speaks about his life

11.45 – 13.00 Breakout sessions - Experts will give workshops on a choice of three topics:

A) Clinical management of ASD Led by Professor Ann Le Couteur, Newcastle University and Dr. Louise Gallagher, Trinity College, Dublin B) Educational interventions for children on the autism spectrum Led by Dr. Karen Guldberg and Dr. Kerstin Wittemeyer, Autism Centre for Education and Research, School of Education, University of Birmingham C) Irish Autism Action: advances in public health Led by Professor Anthony Staines, Dublin City University

13.00 – 14.00 Lunch European Autism Action 2020 Programme

14.00 – 14.30 Setting the context: The landscape of ASD in Europe

Mr. Antoni Montserrat, Policy Officer for Rare and Neurodevelopmental Diseases, European Commission

14.30 – 15.10 European Autism Action 2020: A Strategic Public Health Plan Dr. Alvaro Ramirez, European Autism Public Health Alliance (eapha) 15.10 – 15.25 Coffee break 15.25 – 15.40 Third Call for Proposals of the Innovative Medicines Initiative (IMI)

‘Translational endpoints in autism’, Dr. Will Spooren, Project Leader 15.40 – 16.40 Panel Discussion 16.40 – 17.00 Launch of the European Autism Public Health Alliance (eapha)

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European Autism Action Conference (Autism2010), Dublin

Report

The European Autism Action Conference took place at the Grand Hotel, Malahide, Dublin, on 29 November 2010. This event was the culmination of the intensive consultation process that took place over the period from September to November 2010, comprising two sub-regional consultative meetings at which 35 European countries were represented by professionals and stakeholders in the field of autism spectrum disorders (ASD) and an online consultation which gave the opportunity for a variety of stakeholders to participate in the process. The aim of this consultation was to develop a strategic public health plan for ASD in Europe for the next ten years. The Dublin Conference ‘Autism 2010’ was publicised through extensive direct e-mailing in conjunction with MCI conference organisers in Dublin; e-mails were sent to a database of over 750 people and the conference was also publicised at the sub-regional meetings. Invitations were sent to members of the EU High Level Committee on Public Health (HLCPH); five countries sent representatives to the sub-regional meetings (Czech Republic, Belgium, Hungary, Norway and Slovenia). Government representation at the Conference was from Hungary, the Executive Manager of the Public Foundation for the Equal Opportunities of Persons with Disabilities; from Lithuania, the Head of Mental Health Services; from Slovenia, a representative of the Ministry of labour, family and social affairs and from the host country, Ireland, Mr John Maloney, the Minister of State, Department of Health and Children opened the Conference. The assistant to the Minister of Health for Portugal intended to attend the Conference but had to cancel at short notice and the Executive Director of the National Disability Office of Spain was travelling to Dublin but her flight was cancelled. Ms Barbara Nolan, representing the European Commissioner for Research, Innovation and Science, spoke at the opening of the Conference and a representative from the EAHC attended the Conference for the day. The weather impinged on participation at the Conference as travel both by air and road was affected by adverse weather conditions. In total, there were 138 delegates from 15 different European countries at the Conference, with good regional representation; the breakdown was as follows: 58 paying delegates (autism related charities, parents, professionals, self-advocates and students) 13 Members of scientific and steering committees 3 Invited government representatives 1 EAHC representative 13 Scholarships (from Hungary, Iceland, Lithuania, Montenegro, Poland, Romania, Serbia and Spain) 11 Speakers 28 Invited experts, guests and sponsors 11 conference and production staff The Conference programme was designed not only to communicate the results of the consultative process and the European Autism Action 2020 strategic public health plan, but also to attract delegates by including a broad range of themes on autism to be presented during the day with presentations by eminent speakers and a choice of three breakout sessions in which delegates could participate. Professor Ann le Couteur delivered her keynote speech by internet link due to weather conditions in the UK which made it impossible for her to travel to Dublin as planned; it was entitled ‘Autism across the lifespan – where are we now and what does the future hold?’ Professor Le Couteur’s slides, along with others who made presentations on the day are available on the conference website http://www.autism2010.eu/presentations.htm One of the aspects highlighted during discussions at the sub-regional meetings was the inclusion of people with ASD themselves as participants in policy debates and decisions in the future. Mr Jamie Reilly, a student at Trinity College, Dublin who is on the autism spectrum, spoke to the Conference about his own life and participated in the panel discussion with his ideas for helping others with autism. The transcript of Jamie’s speech is available on the website (link above).

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Three breakout sessions were held: on clinical management of ASD, educational interventions for children on the autism spectrum and advances in public health. Delegates had signed up for one of the sessions at registration. The afternoon programme was to have started with Mr Antoni Montserrat of DG-SANCO speaking about the landscape of ASD in Europe but unfortunately Mr Montserrat’s trip had to be cancelled at short notice so Ms Zsuzsanna Szilvasy of Autism Europe kindly agreed to speak instead. This was followed by Dr Alvaro Ramirez speaking about European Autism Action 2020: a strategic public health plan, the central part of the Conference and the results of the extensive consultation exercise that had taken place in the preceding months. Dr Will Spooren spoke about the EU’s Innovative Medicines Initiative call for proposals on ‘translational endpoints in autism’ and finally, Dr Ramirez officially launched the European Autism Public Health Alliance (eapha). All these presentations can be found on http://www.autism2010.eu/presentations.htm An evaluation sheet was circulated among delegates and 31 sheets were returned. Of these, when asked to categorise the overall quality of the conference, results were as follows: Excellent 10 (33%) Very good 8 (26%) Good 11 (35%) Fair 2 (6%) Poor 0 The comments made on the evaluation sheets were overwhelmingly positive but most who commented made the point that more time for discussion would have been appreciated.

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Annex 3: European Autism Public Health Alliance (eapha) strategy document

eapha is the European Autism Public Health Alliance of stakeholders working to create a pan European public health plan for autism.

Vision eapha aims to transform the lives of persons with autism, their families and carers by providing a plan of action and an ongoing forum for parents’ organisations, academic institutions and public health agencies to share knowledge, experience and skills and to promote advocacy for the needs of people with autism.

Mission eapha’s mission is to design and promote a public health planning framework in order to achieve the long term vision of transforming the lives of persons with autism, their families and carers in Europe.

Core values eapha core values reinforce the importance of a strategic plan addressing the complexity of ASD situation in Europe. Organised response – organization is a key element to obtain the most rapid and effective response that persons with autism, their families and carers needs in the European context. Excellence – We propose the highest standard of care, quality of clinical and epidemiological research as well as political framework in the interest of persons with autism, their families and carers in Europe. Tolerance – We treat others with respect, listen to diverse views with open minds, and foster discussions where participants can comfortably offer opposing opinions. Alliance in Action – Grounded in a common aim with multi-disciplinary approaches, data sharing, teamwork, and partnerships with clearly defined roles and responsibilities. Accountability – We have developed and will continue to develop SMART (Specific, Measurable, Achievable, Realistic, and Time-bound) research objectives aligned with funding priorities and develop systems for evaluation and course corrections.

Strategic objectives: 1) To protect persons with autism, their families and carers by organising the appropriate services

facilities according their particular needs at all levels of the EU for 2020. 2) To contribute in the identification of determinants and risk factor for ASD in EU for 2020. 3) To develop a common strategy for advocacy and awareness including specific education and

training programme across Europe 4) To propose and implement a political and legal frame to support the actions at all levels of the EU 5) To implement an epidemiological program based on Good Epidemiological Practice (GEP) that

will contribute to a better understanding and knowledge of the prevalence, distribution, economical impact and pharmacological-vigilance on ASD in Europe.

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Background Recent years have witnessed an apparent increase in diagnoses of autism spectrum disorders (ASD) in Europe and other parts of the world. However, the reasons underpinning this increase are yet unclear as one of the main difficulties in estimating prevalence of ASD, in a historical perspective, is the fact that understanding and knowledge of autism by health systems, professionals and researchers have improved over the past decade and today disorders are more readily recognised and diagnosed. The current best estimate of the prevalence of autism spectrum disorders is around one in every hundred children*. Early and intensive education and rehabilitation can help children with ASD to develop and learn new skills. Prognosis is greatly improved if a child is placed into an intensive and highly structured educational programme by the age of two to three-years-old. Therefore, early identification of children with ASD could increase the effectiveness of their treatment. Focus on early identification and prevalence is critical in establishing public health responses and in ensuring appropriate support and treatment for affected children, adults and their families. At a time of growing European integration at all levels and in all areas, including knowledge management in and between public health systems, it would be important that member States of the European Union (EU) can learn from each other's experiences and research and share key information and systems, particularly from those countries which have already established public health responses to ASD. In addition, member States should look beyond the boundaries of Europe to create alliances and partnerships with relevant institutions in other parts of the world which have also been studying ASD and elaborating appropriate public responses, particularly in the USA where there has been considerable research and advances in this field. However, to date, there are no existing European-wide information and knowledge management systems on the prevalence of ASD. Furthermore, there are many challenges in establishing such systems, including for example, a lack within and between EU and transition member States of consistency in diagnosis, agreement on case definition and in case finding methods. The issues that continue to surround ASD also affect public health responses because of the significant social and economic costs in treating the disorders. In elaborating adequate and appropriate public responses, government health authorities and institutions need more information and detail on the level and nature of these costs. At EU level, the social and economic costs of ASD have not been adequately recorded, primarily because epidemiological figures are unreliable and inconsistent within and between member and transition States. The ongoing lack of understanding and coherent and consistent practices surrounding ASD have exacerbated the difficulties facing those affected and their families in accessing adequate and appropriate public services, including health care, education and social support. The later the intervention in an affected child's life, the greater the time and cost involved in providing health care and support services. Evidence indicates that it would be more cost effective for governments and more humane and dignified for the child and the family to intervene as early as possible in cases of ASD. However, in order to convince EU member States of this need requires quantitative and qualitative research, not only at national but also at regional level. In addition, adults with ASD suffer further challenges through the difficulty in transitioning from childhood to adulthood, for example, benefiting from higher and vocational education, being able to access decent work opportunities, enjoying relationships with their peers and life partners and leading a dignified, rewarding and fulfilled adult life. In this respect, it would be important to focus equal attention qualitative and quantitative research into the needs and expectations of adults with ASD. *Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T. Lancet. 2006 Jul 15;368(9531):210-5

Need for greater coherence within the EU There are a number of support and information networks, associations and societies established in Europe, and worldwide, focusing on support services for children, adults and families affected by autism. In most cases, these are private entities and often established by concerned parents. They provide a vital service, particularly in providing guidance on what support services are available, how

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to access them and what their entitlements are within public support systems, particularly health, education and social services. These organisations and networks are a major cog in the mechanism of support and care for affected children, adults and their families, although they struggle with the lack of services available, a coherent public health response and government commitment. However, there needs to be a similar level of knowledge management, interaction and networking for medical and health practitioners and at regional level. On the one hand, affected children, adults and families need to be informed about the nature of the disorders and what support services, if any, are in place to assist in dealing with the symptoms and helping children and adults through education and care services. On the other, it is vital that research and information are shared between medical and health practitioners and researchers to ensure that appropriate responses can be developed through public health systems, at national and regional levels. This is clearly not a straightforward matter in a region as large and diverse as Europe where there are significant differences between countries in terms of standards and development in public health systems and services, language, capacities, and so on, especially for transition and accession member States. When considering the issue of public health at European level and looking at trends and indicators, it is vital to work with data that are comparable which underlines the need for consistency, coherence and reliability in measurement mechanisms and indicators. Since 2005, ASD has been included in both the 'Rare Diseases' and 'Major and Chronic Diseases' Task Forces of the European Commission (EC). Although some conditions or syndromes within the autism spectrum can be categorised as rare diseases, there is an argument for no longer categorising ASD as such. Indeed, the public health burden of these disorders is now considerable. As early as 1996, the European Parliament launched an official declaration in which it urged the EC to fully support any effort and project to develop the rights of people with autism. Against this backdrop and with the support of the EU, the Irish-based Hope Project, led by Dr Alvaro Ramirez of the Chiren Therapy Centre, carried out a project from 2006 to 2008 to establish the European Autism Information System (EAIS) to address the lack of systematic, consistent and reliable data about ASD in Europe and the lack of agreed and harmonised early detection tools across the EU. By adopting an articulated strategy, including networking among major European stakeholders, the project aimed to mobilise the scientific community to discuss and agree upon appropriate tools to measure and monitor cases of ASD and the economic impact they have on families and States. The ultimate aim of the EAIS project was to establish an information system to record ASD data that will be endorsed and ultimately used by stakeholders in the EU. The project also involved a number of reputable institutions, organisations and individuals in the field of ASD across the EU. The six main project partners were: • Institute of Psychiatry, King's College London, United Kingdom • North Atlantic Neuro-Epidemiology Alliances (NANEA), Institute of Public Health, Aarhus

University, Denmark • Azienda Ulss20 di Verona, Italy • Rare Disease Research Institute, Carlos III Health Institute (ISCIII-IIER), Spain • Department of Epidemiology and Public Health, University College Cork (UCC), Ireland • Autistik, Czech Republic

Foundations laid by the EAIS The EAIS project conducted activities and formulated strategies in the following four key areas to improve the quality of life of children and families affected by ASD: • Establishing accepted characteristics of ASD to facilitate studies on prevalence across Europe.

This work included the design of a European Protocol for Autism Spectrum Disorder Prevalence. • Establishing common criteria to assess the financial burden of identifying and treating disorders in

different countries, including provision of appropriate services. • Developing mechanisms to obtain systematic, reliable and consistent data on ASD in Europe, in

particular through the design of a database registry programme to facilitate the establishment of a European population-based surveillance system for ASD.

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• Developing a harmonised early detection tool through screening to facilitate early diagnosis of

ASD. The EAIS project succeeded in laying the foundations for each of these four key strategic areas. It also highlighted the challenges and complexities in creating an information network for consistent and reliable information on ASD within the EU. However, its important work marked the beginning of a long journey and much remains to be done. The EAIS project has highlighted a number of activities that are required to reinforce progress made in the field of ASD, including establishing a comprehensive set of selection criteria for pilot study areas of the harmonised tools developed by the EAIS and proceeding with the implementation and follow-up of these studies. The EAIS aimed to help a growing percentage of the EU population that is affected by ASD and to facilitate a more reliable interpretation of autism trends in Europe which would contribute to effective and informed decision-making by public health authorities and to developing vital policies and programmes. Ultimately, the EAIS project outcomes could be further developed to become a comprehensive EU surveillance system of ASD.

The European Autism Public Health Alliance (eapha) Therefore, it is vital that that the initial work of the EAIS project is moved forward in a coherent and comprehensive manner. Although there remain major challenges to be tackled in the field of ASD in Europe, significant progress can and has been made in recent years that serves to reinforce the ambition and determination of those who work for these vulnerable children and adults to continue their quest to improve their lives and those of the families who care for them. ASD is an emerging public health issue that challenges the very fabric of society and, as such, demands a global public health response of equal proportion, determination, courage and resources. This document seeks to outline an effective strategy to move the agenda on ASD forward in Europe within the context of the achievements of the EAIS project. An important outcome of the EAIS project that sets out the framework of this document was to lay the foundations for the creation of a new sustainable network on ASD, the European Autism Public Health Alliance (eapha), as a multi-stakeholder forum to facilitate communications between and co-ordination of professional expertise in the EU on: • Early detection and diagnosis of autism • Management of data systems (surveillance) • Prevalence and financial burden of ASD in the EU • Interventions and treatments of ASD • Public awareness of ASD Essentially, eapha aims to bring together the various stakeholders either working in the field of ASD or representing those affected by these disorders, comprising the four main groups below: • Organisations representing those affected by ASD, their families and carers in different European

countries • Research and academic institutions • Public health agencies and institutions • Other relevant public service agencies and institutions These groups represent those affected by ASD and its consequences, as well as those who are seeking to identify its causes and effects and therefore future treatment and preventive action. In addition, they represent those public bodies which are responsible for the development and provision of services to those suffering from or affected by ASD, including families. There are strong links between all four stakeholder groups which is why it is vital that they are equally represented within the alliance to facilitate awareness, understanding, communications and sharing of information and knowledge.

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Organisations representing people affected by ASD These groups are the driving force behind the growing activism in Europe to raise awareness of ASD in society and to lobby governments, the EC and other EU bodies to advocate for enhanced service provision to help those affected by ASD, their families and carers. Early detection is particularly important for children with ASD and their families. The EAIS project highlighted the significant divide between the needs and expectations of people with ASD and their families and the actual level of service provision in the fields of health, education and social services. eapha aims to ensure that all stakeholders have a voice in ongoing coordinated efforts to tackle ASD in Europe. The alliance will provide a forum for people to contribute meaningfully to discussions and to empower those affected by ASD in policy and programme development at national and EU level.

Research and academic institutions The role of research institutions is critical in finding out more about ASD and understanding it better, including its causes, such as those related to genetics and environmental risk factors, as well as diagnosis, treatment and other interventions, for example, early detection and the role of neuroscience. Research and academic institutions will aim to further support European and global research into the causes, consequences, diagnosis and treatment of ASD. An important outcome will be to develop and/or strengthen communications and coordination between relevant scientific, medical, research and academic stakeholder groups across the EU and other countries and regions, in particular, the USA.

Public health agencies and institutions One of the major objectives of eapha is to lobby for an EU-wide public health programme to be developed and implemented to tackle ASD and ensure adequate provision of vital public services to those affected, their families and carers. As well as involving government health and medical agencies and institutions from across the EU, eapha will also further strengthen its collaboration with the EC's DG-SANCO with the aim of establishing and improving data collection and analysis and information and surveillance systems relating to the prevalence of ASD in EU member States to support early detection and diagnosis, treatment, follow-up and service provision. These elements underpin the development and implementation of an EU-wide public health programme on ASD.

Other relevant public service agencies and institutions As part of its advocacy activities, eapha will focus on coherence and integration of public service provision for ASD sufferers and their families. In particular, eapha will seek the involvement and support of agencies and institutions in the area of education, particularly special needs, vocational education and skills training, health and social services. Research into the situations of those affected by ASD points to an urgent need for a coherent package of integrated service provision to alleviate the burden, financial and otherwise, on families and carers, and ensure that people with ASD can benefit from their fundamental rights to education and training, life skills activities, recreation, and a dignified, decent and fulfilled life.

Next steps The structure, mechanisms and activities of eapha will evolve through detailed discussions with different stakeholder groups, taking into account their needs and expectations. Although there are many common areas of concern and interest shared by each group, their perspectives, positions and requirements differ considerably. In addition, there are significant differences between EU member States in terms of diagnosis, treatment, service provision and support. By bringing these four stakeholder groups together within the framework of eapha and from across the EU, sharing information, experiences, expertise and views in an open and constructive forum, it is anticipated that major advances could be made to elaborate, endorse, promote and follow up an agreed regional public health approach on ASD. This approach would inform and guide national responses to ASD and ensure coherence and consistency of policies and programmes to provide adequate and meaningful support to those affected.

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European Autism Action 2020 (eaa2020) The establishment of an EU public health programme on ASD is the ultimate goal of the proposed eapha initiative "EAA 2020" which aims at improving the quality of life of individuals affected by ASD. eapha will mobilise and engage with the stakeholder groups, individually and collectively, to elaborate a ten-year strategic plan to be launched on 29th November 2010 during the founding conference of eapha in Dublin, Ireland. By 2020, eapha aims to ensure that an EU-wide ASD public health policy and programmes are in place and operational, focusing on risk factors, early detection, diagnosis, prevalence, health promotion, treatment, surveillance, monitoring, awareness, support services and prevention. The process and activities will take into account that a number of EU member States are relatively advanced in their own national policies and programmes on ASD and eapha looks forward to the involvement of the stakeholders from these countries in these discussions and their active and constructive contributions to the development of eaa2020 and shaping a future EU policy and programme. The extent of the differences between member States in terms of addressing ASD highlights the critical role that eapha can play in building on the experience and expertise of some partners and providing targeted and detailed technical support to those most in need. The approach of eapha embraces the true spirit of the European Union.

Institutional structures eapha is expected to operate through various mechanisms and networks, including – but not exclusively – seminars, workshops and conferences, bringing together relevant experts, interest groups and stakeholders to reach consensus on European ASD issues and to build on the foundation work of the EAIS project. It will establish a register of relevant professionals to facilitate an enhanced knowledge management system and network on ASD in Europe. The EAIS project coordinators are determined to move the creation of eapha forward in the short-term as it is vital that high-level collaboration of experts and stakeholder groups in the field of autism epidemiology continues to ensure that momentum is not lost and that the goals of eaa2020 can be reached. As a first step, Irish Autism Action (IAA), with the support of EC DG-SANCO, is organising the Autism2010 conference entitled "European Autism Action: Conference on a European strategic plan for autism". Participants will be invited from the four stakeholder groups identified above and from across the EU and will prepare for the conference through two European sub-regional consultative meetings. The conference has three specific objectives: • To create, mobilise and facilitate representative sub-regional consultative groups of experts and

stakeholders to discuss and finalise the terms of reference of the eaa2020 strategic plan. • To establish a Scientific Committee of Experts for consultation and guidance in the finalisation,

implementation and follow-up of the eaa2020 strategic plan. • To progress the establishment of eapha and consolidate and expand its role as a regional forum

to share, coordinate and disseminate knowledge and information on ASD across the EU and to act as a vehicle for eaa2020.

The conference will also play the role of founding congress of eapha and efforts will be made to promote the importance of the Alliance before, during and after the sub-regional meetings and to mobilise and engage potential members from different European countries.

Secretariat eapha will be established initially as a charitable organisation in the Republic of Ireland. Dr Ramirez and his team, supported by the expertise of partners developed during and since the EAIS, including Irish Autism Action and Autism Speaks, will assume the role of secretariat in its early stages of development, but this may change in the longer term as eapha evolves and develops as a regional alliance. The secretariat will include the following posts which will not all be full-time positions in the early stages of its work: • eapha Coordinator • Project and Finance Administrator • Communications and Marketing Coordinator

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• Fund-raising Coordinator Through the acclaimed work of the EAIS, eapha has already established close relations with a number of key organisations and professionals around the world in the field of ASD, including the Centers for Disease Control (CDC) in the USA, which have indicated their strong support for the concept and objectives of an EU-wide alliance in this field and a well-articulated regional strategic plan to address the causes and consequences of ASD. The secretariat will further develop these relations in pressing ahead with its agenda.

Executive Committee Once eapha is established and its constitution is finalised and endorsed by Alliance members, an Executive Committee will be elected through democratic processes. The Committee will be drawn from the four stakeholder groups to ensure equal representation. It is recommended that a president and four vice-presidents, to represent each of the stakeholder groups, will be elected to provide leadership and representation of the organisation. The Committee will meet at least once a year to oversee the work of eapha and the secretariat and to discuss institutional and substantive issues as they arise. The day-to-day management of the Alliance and its activities will be assured by the secretariat. The Executive Committee will appoint sub-committees as necessary and required by the constitution and the work of the Alliance, for example, a finance committee to provide oversight of the management of various resources.eapha's finances will be subjected to independent scrutiny as required by law and to ensure full transparency and accountability.

Stakeholder and thematic groups eapha envisages an inclusive structure which will ensure that each stakeholder group is equally represented and has an equal voice in policy and programme determination. This would mean that four sub-committees would be established representing the four stakeholder groups to ensure that each would have its own space and sub-structures to discuss issues of specific relevance and interest, or to discuss broader institutional issues to define and promote their own perspectives and concerns, for example, in policy and programme development. Each group would establish and elect a representative sub-committee and set its agenda accordingly, taking into account the wider institutional programme objectives, particularly EAA 2020, but with the flexibility to address issues of specific concern and interest. Over time, eapha will establish sub-groups to address thematic issues as and when they arise. These thematic issues may include prevalence, service provision, data collection, surveillance and monitoring, and awareness raising. The thematic sub-groups will include representatives from each of the stakeholder groups to ensure coherence and integration. This will facilitate and strengthen policy and programme development and contribute to the emergence of national and EU public health programmes on ASD that are inclusive and are endorsed by the different stakeholder groups.

eapha services and activities In shaping itself as a centre of excellence on ASD, eapha will offer a range of services and activities to its members and others that will aim to address needs and expectations as they arise. These services and activities will become more clearly defined over time as the Alliance grows and needs and expectations are articulated. As a regional alliance, there will be significant differences between the needs and expectations of stakeholder groups across Europe and eapha will address these through the creation of a peer support network to ensure that experience and expertise are shared and used effectively and efficiently.

Projects An important element of eapha's work will be to follow up the critical outcomes of the EAIS project, particularly in the field of prevalence studies, validation studies on early detection and the development of a European database on ASD. eapha, in collaboration with partners and stakeholder groups, will develop comprehensive project proposals for submission to a range of potential donors, including the EC (DG-SANCO and other relevant DGs), national governments, aid agencies, bi- and multi-lateral organisations and private foundations. These projects will continue the work of the EAIS in contributing to vital research and knowledge development in the field of ASD, further pursuing the

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objectives of eaa2020, and working towards the development of national plans of action and an EU public health programme. Projects will be implemented, managed and followed-up by fixed-term project staff hired within the context of each project's resources as necessary, or by the secretariat itself. Overall coordination and backstopping, including financial oversight, will be assured by eapha secretariat and Executive Committee.

Conferences, workshops and related forums The work of eapha will carry significant authority in global efforts to address ASD, particularly in terms of the involvement of its scientific and academic members. In this respect, based on resource mobilisation efforts, eapha will seek to organise regular conferences, workshops and related forums to address specific issues of concern. The first of these will take place in 2010 with eapha conference on eaa2020. In future, through discussions with stakeholder groups and partners, eapha will aim to fulfil the goals of eaa2020 through the organisation of regular meetings and information exchange. These may be international, regional, sub-regional or national as required and the issues will be drawn from the content of the eaa2020. In addition, eapha will participate in meetings organised by third parties to reinforce its partnerships and to promote the work of the alliance and its activities in Europe.

Advisory services eapha will also develop advisory and consultancy services for members and third parties. Where possible, these services will be self-financing. In the short- to medium-term, eapha will not develop internal capacity to provide technical and other advisory and consultancy services and support as this would be inefficient and costly. The aim would be to develop a global network of technical experts in different fields related to ASD and to contract their services as required. In some cases, this may require direct advisory services, for example, to assist public health authorities in developing a national plan of action on ASD, whereas in others, it may involve one-off capacity-building exercises, for example, training in awareness raising methodologies specific to ASD. As an alliance and through the development and strengthening of its partnerships, eapha will gradually build a comprehensive network of technical experts in different fields to contribute to the achievement of eaa2020 goals and to its own establishment as a centre of excellence. A fee structure will be developed that will contribute to eapha's own resource base and institutional costs as well as the cost of hiring technical experts. These services will therefore facilitate the growth and development of eapha to enable it to become financially independent in terms of its institutional cost base. In this way, it will be able to develop its own internal capacities and structures over time.

Communications Awareness raising and communications are important elements in the life of any organisation, but more so in the early stages of development. eapha will take over and further develop the EAIS web site as a key communication tool for members and third parties. Using the web and other media tools and strategies, eapha will strengthen its partnership and membership activities and services while raising the public profile of ASD and raising awareness among different stakeholder groups. eapha will seek to establish close links with existing ASD organisations and alliances across Europe and worldwide to avoid duplication of effort and resources and to ensure greater coherence of effort, policies and programmes. The ultimate goal is to create solidarity between interest groups and to achieve comprehensive public health policies and programmes for those affected by ASD, their families and carers. Communication is crucial in achieving this goal and this area of work will be further developed in the coming months and years.

Resources and finance As a charitable organisation, the issue of finance is central to the objectives and ambitions of eapha. The secretariat already has significant experience in the field of project development which will be one of the sources of financial support. However, it is vital that eapha has a broad resource mobilisation

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strategy that will enable it to conduct its regular institutional activities and to grow and develop as a regional alliance. With the approach of the first eapha conference in 2010, efforts are already under way to mobilise resources to cover the costs of this activity in Dublin. As can be seen from the section on the secretariat, eapha will benefit from the services of a fund-raising coordinator as well as the fund-raising efforts of its associated partner, the IAA. Fund-raising activities will explore both public and private possibilities, examining the sponsorship and corporate social responsibility policies and programmes of different bodies and companies and developing tools to mobilise and engage potential sponsors. Efforts will be made to develop financial support packages that take into account the interests and resource capacities of different sponsors and to further promote the work of eapha among public and private entities, including relevant foundations. Project management services will include institutional support for eapha's core activities and structures, as will advisory, consultancy and technical services. The aim will be to assure self-financing for all core activities of the alliance so that funds raised by eapha can be directed towards activities for the benefit of members and the achievement of the goals of eaa2020. In addition, membership of eapha will be on a fees-paying basis which will be set according to a sliding scale yet to be determined. The scale will take into account the financial capacities of different members from around Europe. Clearly, the task before eapha is to achieve its goal as a centre of excellence on ASD-related issues and to assure the quality of its activities and services for members so that membership will grow accordingly. Requiring members and partner organisations to pay fees to eapha will build a sense of ownership and involvement among members and encourage their full participation in its activities and support for eaa2020. These fees will contribute to the costs of regular core activities and structures of eapha.

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Annex 4: Countries Report

Introduction The challenge to develop a ten-year strategic public health plan for autism as intended through European Autism Action 2020 (eaa2020) needs to be based on a good knowledge of the situation of people with ASD within each country of Europe in order to be respectful of national differences whilst being comparable between countries. This document presents information that has been extracted from 35 European countries’ presentations at two sub-regional meetings and tries to summarize the information each presenter shared, following the outline and subtitles as follows: • Profile of the person presenting country’s information • ASD diagnosis situation • ASD epi-information presented by country in the sub-regional meeting • ASD Research • ASD Services • ASD Awareness • ASD Policies • Further comments The sub-regional meeting for Eastern and Central European countries took place in Budapest on 13th & 14th September and the 17 participating countries were: Hungary, Albania, Bosnia & Herzegovina, Bulgaria, Croatia, Czech Republic, Estonia, Greece, Latvia, Lithuania, Macedonia, Moldova, Poland, Romania, Slovakia, Slovenia and Ukraine. The sub-regional meeting for Northern, Western and Southern European countries took place in Palma de Mallorca on 23rd & 24th September and the 18 participating countries were: Spain, Austria, Belgium, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Sweden, Switzerland and the UK. Country representatives at both meetings spoke about the level of awareness, diagnostic pathway, services and prevalence where data were available. The presentations gave a very thorough overview of autism across Europe; in such a large and diverse region, where there are significant differences between countries in terms of standards and development in public health systems and services, this information is highly relevant and useful as a starting point for building a strategic public health plan.

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Albania

Profile of the person presenting country’s information: Psychiatrist

ASD diagnosis situation • Year autism was first recognised in the country: 1985 • Age when children with autism are usually first diagnosed: 36 months • Months of delay for diagnosis since first consultation: 14 months

ASD epi-information presented by country in the sub-regional meeting No real prevalence data available.

ASD Research Possible future research projects: early screening for ASD and prevalence study.

ASD Services • Systematic ASD screening programme at early ages in the region/country: No • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Very few services

available

ASD Awareness The first parents’ foundation started in 2007 2008, 2009, 2010: public awareness campaigns held (April)

ASD Policies The Albanian Children’s Foundation and Autism Speaks have established the GAPH-Albania National Advisory Committee (GANAC) comprised of leading Albanian health and education professionals and experts in autism epidemiology, early diagnosis, and early intervention from the United States, Canada and the UK. Representatives from Autism Speaks science department also serve on the committee.

Further comments Strong current collaboration with Autism Speaks 2010: Launch of the initiative for designing a National Strategy on Autism

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Austria

Profile of the person presenting country’s information: Physician and teacher (two people)

ASD Services Systematic ASD Screening Program at early ages in the region/country: Yes Most children with ASD attend "ordinary schools" with special support: No Services for adults with ASD (day centres, support employment, housing,…): Very few services

available

Comments Screening: Children who do not pass a receptive language screening test at the age of 2 years are sent for assessment (project with primary care paediatricians in Upper Austria). Intervention with TEACCH, PECS... High percentage of integrative kindergartens and schools but no specific training. Mentally retarded people with ASD often live and work in unsuitable institutions (some special day-care centres in Vienna). No work-assistance for people with autism. No offers for elderly people with autism, nor for /people with High-functioning autism and Asperger syndrome. Self-help and parents’ initiatives.

ASD Awareness Little but growing awareness of early signs of ASD

ASD Policies No obligatorily standards on how to treat people with ASD

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Belgium

Profile of the person presenting country’s information: University Professor

ASD diagnosis situation • Year autism was first recognised in the country: Specialised supports services to family since 10

or 20 years (depending on the region); RCA (national reference centres) in 2005; TEACCH program since early 80´s

• Age when children with autism are usually first diagnosed: • Months of delay for diagnosis since first consultation: 12-24 Months

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates). 600 diagnoses annually. 850 children last year in TEACCH program

ASD Research More than 20 years training for parents (specialised support services)

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…):

Comments Training programs for paediatricians supported by Regional Agency for People with handicap

ASD Awareness Website to inform parents supported by Orange group (www.participate-autism.be). Low awareness about ASD in the General Support Services for families

ASD Policies More demand but no new services or project at political level. A law recognizes residential services dedicated to people with ASD (but only 2 for a region of 4500000 people)

Further comments 8 reference centres organised at National Level (RCA) in 2005 Despite availability of Residential settings, these are not well prepared to welcome adults with ASD Despite services for adults, there is not enough specialised training Employment: 1 sheltered workplace specialised in autism in the Flemish region (not in the Walloon region); financial support for employment if people are inscribed in the Handicap Agencies 2 specialised mobile support teams for challenging behaviours

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Bosnia & Herzegovina

Profile of the person presenting country’s information: University Professor

ASD diagnosis situation Age at which children with autism are usually first diagnosed: 36-48 months

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates) prevalence data provided: 3500-22000 based on WHO information.

ASD Services • Systematic ASD Screening Programme at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD(day centres, support employment, housing,…): None available

ASD Awareness World´s Autism Day

ASD Policies Initiative to all institutions of government about the protection of human rights of people on the AS

Further comments No treatments at all on the institutional level Doctors who establish diagnosis of ASD redirect parents only to self-education, usually through the internet, where everything is in English 4 registered ASD associations .

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Bulgaria

Profile of the person presenting country’s information: Psychologist

ASD diagnosis situation • Year since autism is recognized in the country: Karin Dom Foundation was the first NGOs in

Bulgaria which started work with children with disabilities. • Age at which children with autism are usually first diagnosed: One of the biggest problems in

Bulgaria is early diagnosis and early intervention. Diagnosis is made by a psychiatrist. The real problem is after diagnosis, psychiatrists do not offer services to direct parents to centers that work with people within ASD.

• Months of delay for diagnosis since first consultation: Often parents diagnose children themselves or gather information from the Internet.

ASD epi-information presented by country in the sub-regional meeting Lack of data. There is a statistical speculation that around 16,000 individuals have ASD, but it is not clear where the information was taken, as no study has been done.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Very few available

Comments There is no official information or a register of centres working with individuals within ASD. There are special schools and day centres but without special educational programs for people within ASD. Most centres created and sponsored by parents.

ASD Policies Lack of solid legislation on incorporating education for children within ASD.

Further comments In practice there are no real conditions for social integration of people within ASD - even if they achieve the necessary level of education, no career is possible for them, because they are rejected. A great number of children/students in groups at kindergartens and in classes at public schools. Unsuitable school materials for children within ASD. Lack of adequate system of criteria for evaluating the school achievements of children within ASD. Most of the teachers are not trained to provide special education for children with ASD.

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Croatia

Profile of the person presenting country’s information: Parents’ national association President

ASD diagnosis situation • Year autism is recognized in the country: In 1979 Croatian autism society was established • Age at which children with autism are usually first diagnosed: 48 months • Months of delay for diagnosis since first consultation: Paediatricians wait until children are 4 years

old

ASD Research At the Brain Institute in Zagreb there is a research team lead by Prof. Dr. Ivica Kostović working on ASD research projects in cooperation with colleagues from USA.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • (only a small number of children in some major towns) • Services for adults with ASD(day centres, support employment, housing,…): No – only in Centre

for Autism Zagreb

Comments Centre for Autism Zagreb with branches in Rijeka and Split is the only institution with organized care for children and adults (adults only in Zagreb) with autism in Croatia. Services for the autistic population are also limited because there are not enough specialists - special teachers, speech therapists... even in the major cities

ASD Awareness Needed

ASD Policies Autism recognised in the legislation of the Ministry of Education (despite not being implemented in practice) but not in the Ministry of Health and Social Affairs.

Further comments Early intervention in family has started only 4 years ago thanks to the projects initiated by local parents’ autism associations. (The importance of EI and parents support is not well recognised by the government) Only a small number of children with ASD are integrated in regular schools with support Because of previous poor diagnostic criteria (diagnosis of Mental Retardation instead of ASD), some people with autism are placed in other institutions. Adults over the age of 21 are still in school programmes because of a lack of adult services and residential care. Diagnostic criteria are much improved for ASD, but we still need one diagnostic centre for ASD in Croatia, as we had before in Jankomir (shut down in 1995). In Croatia we have legislation, but implementation on the whole area is not well organised because there is not enough understanding, support and cooperation between Ministries of Education and Health and Social Affairs and also local government in many areas of Croatia.

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Czech Republic

Profile of the person presenting country’s information: Parents’ association President

ASD diagnosis situation • Year autism is first recognised in the country: around 1970 • Months of delay for diagnosis since first consultation: varies according to region from 1 to 6

months

ASD Research Only research at Child Psychiatric Clinic and Prague

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD(day centres, support employment, housing,…): None available

ASD Awareness Not sufficient, getting better slowly

ASD Policies Not sufficient, getting better slowly

Further comments Title of the presentation: Increased Public Awareness (only information on public awareness and the NGO AUTISTIK)

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Denmark

Profile of the person presenting country’s information: Parents’ association President

ASD diagnosis situation Year autism is first recognised in the country: Autism Denmark since 1962; Centre for Autism since 1994

ASD epi-information presented by country in the sub-regional meeting Evidence based. 657 in 1999/ 2316 in 2007 but in 50 years of ASD in Denmark with 5.5 million people, 30,000 should have been diagnosed

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes • Most children with ASD attend "ordinary schools" with special support: see further comments

below • Services for adults with ASD (day centres, support employment, housing,…): see further

comments below

ASD Awareness National Autism Plan

ASD Policies National Autism Plan

Further comments Special Kindergartens – children with ASD + some other groups; special schools/day schools; special classes in primary schools and children included in primary schools (with special support); club- and leisure facilities; specially designed education for youth (duration 3 years – age 16-25 years); supported education; supported employment; vocational training (including production); day centres; different housing options, either public or private (but Government paid); supported housing with mentors or home counselling; pedagogical/psychological services: Counselling, mentors, assessments etc.

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Estonia

Profile of the person presenting country’s information: Psychiatrist

ASD Research Scientific research programme of Gothenburg University in Sweden

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): None available

Comments Special classes for ASD children exist only in the 2 largest cities. Rehabilitation services managed by the Ministry of Social Affairs are bought by the State from non-profit organisations or private centres (decision on whether or not somebody is in need of rehabilitation services is managed and financed by the State)

ASD Awareness Estonian Autism Association raising awareness

Further comments Two different languages ICD diagnostic system is used, no ADOS (but use of ADI-R)

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Finland

Profile of the person presenting country’s information: Three presenters: Dean of Education (PhD), neuropsychologist (PhD) and Executive Director of The Finnish Association for Autism and Asperger’s Syndrome

ASD diagnosis situation • Year autism is first recognized in the country: Publication on Prevalence in North of Finland since

2000 • Age at which children with autism are usually first diagnosed: Children with autistic disorder (AD)

are diagnosed on average before the age of 3 years, (range 6 mo-11y 3mo). • Months of delay for diagnosis since first help search: Months of delay in diagnoses was wide from

6 months to 9 years. The reasons for the wide range was associated to co-morbidity factors (i.e., autism was not diagnosed if there were other diagnoses). The poor knowledge of autism amongst professionals (doctors, teachers and psychologists) delayed the diagnoses.

ASD Prevalence data Evidence based (see further comments)

ASD Research Research is mainly done in five university hospitals but also in other universities throughout Finland. Multidisciplinary topics of research relate, for example, to genetic, epidemiologic and neurocognitive factors as well as early recognition and early intervention together with intervention studies using new technology.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes • Most children with ASD attend "ordinary schools" with special support: Yes • Services for adults with ASD (day centres, support employment, housing,…):Yes

ASD Awareness Finnish Association for Autism and Asperger’s Syndrome: distribution of information and materials, guidance and consulting services, library services, training services and educational seminars

ASD Policies Finland's Disability Policy Programme 2010-2015 ‘A Strong Basis for Inclusion and Equality’: the programme is divided into 14 content areas, with 122 concrete measures. http://urn.fi/URN:ISBN:978-952-00-3024-7 The Government's Disability Policy Report in 2006 showed that there is a need for further actions. Continuous interaction is needed between the authorities and citizens in order to take into account the rights and life situation of special groups, such as individuals with autism, in decision-making. The United Nations Convention on the Rights of Persons with Disabilities is under signature process. More detailed information about disability policy in Finland: http://pre20031103.stm.fi/english/pao/publicat/disabili/disabili.htm

Further comments Prevalence: First study (5- to 7-year-olds) Prevalence of autism 20.7/10 000/Autism and mental retardation 50.2% (N=17) Latest study (9-year-old) Prevalence of autism 27.0/10 000/Phenotype of Asperger Syndrome 45.0/10 000 /Prevalence of ASD 76.9/10 000 /ASD and mental retardation 35, 3% (N=12) Combination of two studies (5- to 7 and 9-year-olds) Prevalence of autism 23.8/10 000 / Prevalence of ASD 68.9/10 000 Public services: Initial diagnosis, rehabilitation plan and follow-up services in the university or regional central hospitals; special medical rehabilitation including speech therapy, occupational therapy,

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neuropsychological rehabilitation; early special education in municipal day care centres (in mainstream or in special day care centres); special needs education, which includes an individual education plan, in mainstream schools or in special schools; disability allowance for the parents of children under 16 years of age (The Social Insurance Institution of Finland); rehabilitation allowance for adults over 16 years of age (The Social Insurance Institution of Finland); adaptation and rehabilitation courses (operated by private service producers and supported by The Social Insurance Institution of Finland). Private services and parents’ organisations Private clinics; special education service units; vocational special education units and services provided by the third-sector: The Finnish Association for Autism and Asperger’s Syndrome: promotion of interest/awareness; supporting the local associations (27) and their functions in peer support; peer family and local ASD expert network (Aune); empowerment-committee selected by individuals with ASD; Puoltaja- network, including web magazine done by individuals with ASD.

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France

Profile of the person presenting country’s information: Two presenters: parents’ association President and University Professor

ASD diagnosis situation Year autism is first recognized in the country: Due to the predominance of the psychoanalytical model in France, advances in the field of autism have suffered a significant delay. Consequences: persistent confusion in the diagnostic terminology caused by the use of “child psychosis” instead of “developmental disorder" and special educational needs of the children were not taken into consideration; a wary, mistrusting attitude towards the parents who are made to feel guilty; adopting inefficient and costly therapeutic measures; refusal of the psychiatric world to keep pace with scientific progress. They had to wait until 2005 for the ICD-10 to be recommended.

ASD epi-information presented by country in the sub-regional meeting France cannot provide solid numbers on the prevalence of autism spectrum disorders. As things are, parents are requesting that the prevalence rates published internationally be retained to define the needs of those seeking treatment.

ASD Research Researchers are mobilised (genetics, brain function, early screening, early intervention assessments…)

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,): some services but not

good and not enough.

Comments New admissions for care but are largely insufficient in number. The need for intense work with young children is not really taken into account in the institutions, personnel are not sufficiently trained and care worker schools are still overly influenced by the psychoanalytic model. Proposed services still remain ill-adapted to the handicap of autism. Also, certain professionals are adapting to the change in a superficial manner only by adopting the new vocabulary (TED) and still continuing to refer to their old model. In the schools, an inadequate number of AVS (School Life Special Needs Assistants) are available or their services are for insufficient periods of time. They are not properly trained, badly paid and lack motivation due to job insecurity. The success of integration in school highly depends on the good will of the teachers.

ASD Awareness See policies and further comments to interpret ASD awareness situation.

ASD Policies Law Number 102/2005 for Equal Rights and Opportunities

Further comments PACKING!! In 2009, the ‘Vaincre l’autisme’ Association, during the 2nd day of the World Sensibility to Autism conference, initiated a moratorium against the packing practice. *Packing consists in wrapping the child tightly in wet sheets that have been placed in the refrigerator for at least one hour. Thus as the child is restrained in cold, wet cloth, the therapist addresses the child and comments the situation. This treatment, which has no serious scientific foundation, is repeated several times a week. Unfortunately, after a year of enquiry, the High Council of Public Health came to the following conclusions:”Given the absence of remarkable risks identified to this day, the High Council of Public Health considers that the packing practice presents no risk that should justify its prohibition. However,

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the existence of psychic risks is not excluded and should be taken into account in the benefit risk analysis of this care method, as much as in any other care method, whether or not involving medication”. The High Council of Public Health encourages the pursuit of research in this field, regardless of whether the hypotheses upon which this practice is based are supported by any valid scientific information. Diagnosis – the resource centres do not all have the same level of competence and recommendations for diagnosis are not always heeded. The diagnosis is not done early enough or, in some cases, at all, which leads to inadequate service proposals; a great number of adults are not diagnosed properly and are therefore in institutions that do not meet their needs. The development of psychiatry, which is in charge of guiding the multidisciplinary teams who produce diagnoses, is slow. Other medical fields are not always called upon which gives rise to problems when it comes to ensure the somatic health of persons with autism

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Germany

Profile of the person presenting country’s information: Psychiatrist

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates): no epidemiological data on ASD but estimated prevalence of ASD in children and adolescence following Baird 2006: 120,000 approximately, and in adults: 690,000...strongly under diagnosed disorder!!

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,): very few available.

Comments Private institutions are the main providers (social welfare system funds 1-5h per week, sometimes health insurances); no standardised or specialised therapeutic training, most common approach "sensory integration training"; often a lack of quality control and cooperation among services; "Frankfurt therapy model" at University with specialised professionals, only funded 1h per week, but very good services with strong cooperation and integration; 3 specialised years vocational training for high functioning people with ASD, funded by unemployment insurance.

ASD Policies Social Welfare system funds nurseries and special schools, also integration into mainstream schools with support by individual assistance. There are several laws regulating integration of individuals with disabilities into main working sector.

Further comments Diagnosis in medical sector is carried out by neurologists or psychiatrists but there are waiting lists and underdiagnosis in adults. Diagnoses from private "Autism Therapy Centres" are no longer accepted by Social Affairs Institutions. Diagnosis criteria: ADOS, ADIR, IQ,

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Greece

Profile of the person presenting country’s information: University Research Fellow

ASD diagnosis situation • Year autism first recognised in the country: ASDs were officially recognised as a handicap just 10

years ago • Age at which children with autism are usually first diagnosed: Lack of awareness of the disorder

among health care professionals and the lack of relevant instruments can delay the diagnosis. This can be attained roughly around the age of 3-4 for the lower functioning non-verbal individuals but later for the more able ones.

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates): no epidemiological data for the country; according to international prevalence data, there are 100,000 people suffering from an ASD.

ASD Research Research is minimal in Greece

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): None available

Comments There is no surveillance procedure for ASDs, although all children in Greece are closely followed up by paediatricians until the age of 5; parent organisations often run intervention units of various types and there is a lack of public infrastructure so these are mainly private, requiring a lot of money from the parents; minimal financial help from the State; shortage of trained professionals to deliver interventions; no control over the various private centres; lack of services for all ages and across the spectrum even though efforts have been made in school education, results are not good enough.

ASD Awareness There is a lack of public awareness for ASD. The disorder is still associated with stigma; it is still considered a very rare and always a very impairing condition.

Further comments There are numerous organisations which are small and with minimal cooperation between them, thus their overall influence is also minimal.

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Hungary

Profile of the person presenting country’s information: Two presenters: parents’ association President and representative of public health service

ASD diagnosis situation • Year autism is first recognised in the country: people with ASD were considered as mentally

retarded people or were classified in other psychiatric illnesses. From the beginning of the 90s autism became more and more accepted as a separate condition.

• Age at which children with autism are usually first diagnosed: Most of the parents first take the paediatrician’s advice, and only 3.5% of the cases were recognised by them. Though 76 % of the parents recognise the first signs under 3, 60 % of the children get the diagnosis between 3-5

• Months of delay for diagnosis since first consultation: 0-24 months

ASD Research In 2009 a National Autism Research study took place.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD(day centres, support employment, housing,…): None available

Comments 500 elementary schools are providing education for children living with autism. Some schools are following the evidence based methods like TEACCH, but lots of them do not have autism specific setting and knowledge (teachers here are not very well trained on ASD)

ASD Awareness Due to the professional and public awareness, and to more available knowledge and materials, there are more and more professionals who are familiar with the diagnosis of autism.

ASD Policies The National Autism Strategy has been enforced by law since 2008, for the first time in Europe. Legal tools are quite good and supportive for education services, except at the university level, where the legal background is missing.

Further comments The Autism Foundation was created as a development centre for autism beside many other civil organizations for ASD. The National Association of Autisms, has a highly developed professional basis, highly vocational and having strong potential for representing their interests. Special teachers and social workers now have the opportunity to do a 400-hour postgraduate course on autism in two universities of the country. However most professionals involved in intervention are trained only in short courses, from 16 to 120 hours, most provided by NGOs. A detailed survey on the labour market situation of persons with ASD is available as well as a pilot project on providing labour market services for them. This project is developed by our Public Foundation and autism NGOs, labour market knowledge to help the open market integration of persons with ASD in 3 areas of Hungary. Regarding community living alternatives, a strategy on deinstitutionalization was created recently by NGOs and the government. Implementation will probably commence in 2011 with European funding. Promising practices providing varied and quality community living alternatives for persons with ASD and their families also appeared in several areas of the country such as farms and other alternatives.

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Iceland

Profile of the person presenting country’s information: Clinical Psychologist PhD, Director of Services, division of autism, State Diagnostic and Counselling Centre (SDCC). The SDCC is the only tertiary centre in the country for serious neurodevelopment disorders (e.g. autism, cerebral palsy, intellectual disabilities). It has a formal affiliation with the University of Iceland

ASD diagnosis situation • The first person to be diagnosed with autism is thought to have been a 10-year-old girl who was

the client of Dept. of Child and Adolescent Psychiatry, University Hospital, in the early seventies. The word “einhverfa” (autism in Icelandic) was coined around 1970. The Icelandic Autistic Society was founded in 1977.

• Non-compulsory preschool services are operated on a daily basis throughout the working week, and children may enter these services during their second year. The attendance of children aged 3-5 is 95%. There is a considerable sensitivity of ASDs within the preschool system.

• However, the primary health care services seem not to have kept up with increased knowledge on ASD, perhaps exemplified by the fact that it was in 2009 that autism was first mentioned in a revised manual of “Recommendations for Preventive Care during Infancy and Early Childhood.”

• There are two main incentives for early detection and diagnosis of childhood developmental disorders that may lead to disabilities. First, within the Social Assistance Legislation there is a special act providing parents of disabled and chronically ill children with financial support based on the child’s needs for special services and care from the Social Insurance Administration. Second, the Icelandic preschool and elementary school legislation has placed an obligation on communities to provide special services for children with disabilities. As a rule, in order to receive financial support and to get special service in school, the child must be assessed by certified specialists or specialized teams.

• Referrals for ASD at the SDCC have been steadily rising since 1997. The minimal requirements for a referral to be accepted is a standardised developmental or intelligence test, behavioural checklists, and information from parents and teachers. During the years, 2006-2009, there was a total increase in referrals of 62% in all age groups (2-18 years), while the number of referrals in the youngest age groups (2-6 years) nearly doubled.

• This huge increase in referrals over a relatively short time-span has created waiting lists and sometimes community-based services may refuse to start intervention until the SDCC has confirmed a suspected ASD. To counteract this tendency, the SDCC started issuing formal responses to the referral parties, parents, and communities, stating (when appropriate) that according to the referral data an ASD was “probable” and urging the community level of services to start intervention without a delay, even if a formal diagnosis had not been reached.

• Preliminary figures for 2010 show that 186 children received ASD diagnosis at the SDCC. About 50% of these children were referred younger than 6 years of age, and about 40% were diagnosed before this age. Therefore we have to conclude that the age at which Icelandic children are identified is unacceptably high.

ASD epi-information presented by country in the sub-regional meeting • The size of the island is 103,000 km2 with a population of 317,630 (Jan. 1, 2010). The number of

live births in 2009 reached 5000 for the first time in history. • Prevalence Studies on ASD in Iceland, based on clinical records, have showed increased

prevalence estimates over time, or from 4.4/10,000 to 54.2/10,000, (Jonsdottir et al., 2007; Jonsdottir, Saemundsen, Antonsdottir, Sigurdardottir, Olason, 2011; Magnusson, 1977; Magnusson & Saemundsen, 2001). The latest prevalence estimate is 120.1/10,000 (95% CI 106.6-135.3) (Saemundsen et al., manuscript in preparation), or 1.2%. (Note. The prevalence estimate presented in Mallorca sub-regional meeting was based on preliminary data).

ASD Research Limited to SDCC participation and the last decade (a selection of references is attached in Annexes).

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ASD Services • Systematic ASD screening programme at early ages in the country is nonexistent. • At the SDCC, assessment and diagnosis is carried out within an interdisciplinary framework

consisting of specialised paediatricians, clinical child psychologists, social workers, and various other professions. All the children have a physical examination and a neurological evaluation. The ADI-R and the ADOS are administered as well as intellectual tests and tests of adaptive behaviour. Aetiological investigations, based on clinical findings, sometimes take place before referral to the SDCC, but normally follow formal diagnosis at the SDCC.

• The SDCC provides courses on various aspects of ASD to parents and professionals. Children diagnosed during the preschool years receive continued counselling, and some are revaluated before the entry to elementary school. The counselling following ASD diagnosis in elementary school aged children is much more limited.

• Most children with ASD attend "ordinary schools" with special support. • Parents receive allowances and other financial support, and respite care. • Formal diagnostic services for adults are nonexistent, except in the case of intellectual disability

and other early onset handicaps. For those diagnosed with handicap, there are various forms of services, both regarding housing and employment.

ASD Awareness • Changes in referral patterns. • The film (2009) “A mother´s courage”. • Increased media coverage. • The psychiatric services for adults at the University Hospital have taken a decisive step in

developing a specialised team for ASD diagnostic services.

ASD Policies • Temporarily increased budget for SDCC 2007-2009. However because of the economical

recession, the budget for the SDCC will be reduced again by approximately 20% by 2013. There is an indication that special education at a community level may also be subject to financial cuts.

Further comments • Identifying children late is possibly the most serious public health issue facing the Icelandic

service system regarding ASD. • Other major challenges are adaption of the health care services to the needs of people with ASD,

and their participation in the community (work, higher education, social life).

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Ireland

Profile of the person presenting country’s information: University Professor

ASD diagnosis situation Months of delay for diagnosis since first consultation: Waiting times for assessment vary greatly from place to place for no very obvious reason. It often takes several years for a child to go from initial concerns to final diagnosis

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates): anecdotally similar to UK. Quite a number of cases identified in recent migrants to Ireland from Africa and Eastern Europe but not sure whether this observation relates to a real difference in prevalence. Prevalence study ongoing funded by Irish Autism Action based on EAIS prevalence protocol.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,): Not enough.

Comments Poor integration between health and education service; special provision provided on application for low incidence disorders; service provision varies greatly across the country. Needs: Few autism specific secondary schools and few specific adult services within public sector; lack of operationalisation of assessment and intervention. Strengths: Multi-disciplinary working in many services; excellent and highly motivated clinicians; increased use of structured approaches to diagnosis, e.g. ADI, 3-Di, DISCO, ADOS.

ASD Awareness Quite reasonable, mainly thanks to the efforts of the NGO sector. Teachers and family doctors would be familiar with the condition to some extent. The media are quite familiar with autism. The level of awareness at a professional level is quite high.

ASD Policies Autism policies are, despite the goodwill, uncoordinated and messy. At the moment politicians are more worried about our economic difficulties. Part 2 of the Disability Act 2005 implemented for children under 5 years of age. Government has set its face firmly against a rights based approach to health service provision

Further comments There is no well structured rapid diagnostic pathway (depends on the area where the child lives, and the determination of their parents); intervention and level of integration at school depends on IQ; no national autism database.

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Italy

Profile of the person presenting country’s information: University Professor

ASD diagnosis situation Year autism is first recognised in the country: The first association was founded in 1985: ANGSA. Journals (Il bollettino dell’angsa, founded in 1988), websites and blogs to improve the awareness in public and professionals and to stimulate scientific research. March 2005: The Italian Society of Child and Adolescent Psychiatry (SINPIA) Guidelines for autism diagnosis and clinical management; January 2008: The Italian Ministry of Health Final Report of the National Work Meeting on Autism; August 2009: The Italian Ministry of Education, University, and Research (MIUR) Guidelines for the integration of disabled students in school; October 2010: Istituto Superiore di Sanità Guidelines for Autism (still to become public).

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates): 2-3/1,000 in Regione Abruzzo (2005-2006) /1.2/1,000 in Regione Emilia-Romagna (certificates in kindergarten)/ 1.7/1,000 certificates in primary school (2005-2006). There are no nationally-based incidence estimates. Incidence estimates are low due to incomplete sampling and missed diagnoses, not because of truly lower incidence rates compared to other countries.

ASD Research 328 publications so far

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: Yes • Services for adults with ASD(day centres, support employment, housing,…): Not enough

available

Comments School teachers are usually not trained to deal with ASD. Most ASD diagnoses change at age 18. Residency programmes in adult psychiatry do not train in ASD. The creation of communities for adults is left to the initiative of families.

ASD Awareness Awareness in society and in the mass media is low (occasional coverage by the mass media, especially in the case of crimes or “miracle treatments”); awareness in the National Health System. is low among paediatricians and high among paediatric neurologists and child neuropsychiatrists (some are still psychoanalytically oriented, although less than in the past); awareness in the public school system is high, because all disabled children are mainstreamed through the public school system but teachers (including special education teachers) lack training and supervision in dealing with ASD children and adolescents. Delayed diagnosis due to lack of awareness among paediatricians

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Latvia

Profile of the person presenting country’s information: parents’ association President

ASD diagnosis situation • Year autism is first recognised in the country: Autism known as diagnosis in 1980, only in the last

5 years substituted by ASD, but first diagnosed officially in Latvia in 2006 • Year when the children with autism are usually first diagnosed: 36-48 months • Months of delay for diagnosis since first consultation: paediatricians say: let´s wait and see. Since

July 2010 ADOS started to be used!!

ASD epi-information presented by country in the sub-regional meeting 123 in 2008

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD(day centres, support employment, housing,…): None available

Comments No special programme for ASD in special education schools. ASD is misclassified into the severe mental daily group in Special Schools. Drug therapy is the main therapy (although less in the last 3 years). Other therapies are musical, art therapy, psychologist but only 2-3 weeks 2 times per year. No ASD training for professionals.

ASD Awareness Very recent ASD awareness in Latvia, still parents have no chance to create strong network, under "mental health centre"

ASD Policies Total absence

Further comments Lack of multidisciplinary approach; lack of powerful institutions to support and coordinate ASD issues; lack of professional training.

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Lithuania

Profile of the person presenting country’s information: Parents’ association President

ASD diagnosis situation

• Year autism is first recognised in the country: about 1996 • Age at which children with autism are usually first diagnosed: 3-4 years • Months of delay for diagnosis since first consultation: Quite a few (no exact data)

ASD epi-information presented by country in the sub-regional meeting As Lithuania has about three million populations, we can guess that about three thousand have as ASD. However we do not have any exact statistics.

ASD Research No research is being done so far

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Very few services

available

ASD Awareness Statement of lack of awareness

ASD Policies No general ASD policies. Only some individual groups in some places exist.

Further comments Lack of appropriate specialists and therapies

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Luxembourg

Profile of the person presenting country’s information: Parents’ association President

ASD diagnosis situation Year since Autism is recognized in the country: Before 1981 no specific initiative for autism /29.09.1981 Creation of the first specialised organisation

ASD epi-information presented by country in the sub-regional meeting 191 officially diagnosed children and adults with autism

ASD Research International Information Centre; research and studies on metabolic disorders and behavioural problems.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Appropriate.

Comments Services in 2010 : 20 people with autism are living in Munshausen; in addition 4 people are coming to the day centre; 35 families benefit from service support and training; residential places for 20 young adults and adults; day centre for 24 people with autism; holiday camps for autistic children and adults; diagnostic and evaluation service; club and family support for families affected by Asperger Syndrome; interventions in schools via SCRIPT program; training for school staff; consulting service; Early Bird programme; more than 40 autistic students in 7 cohabitation classes in the area of Luxembourg-city start to create special classes for autistic children.

Further comments Diagnosis: apart from NGOs there are two other hospital centres for ASD diagnosis and treatment in Luxembourg (one for ages 0-14 and the other 14-18)

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Macedonia

Profile of the person presenting country’s information: President of the Institute of Special Education and Rehabilitation, Faculty of Philosophy, Skopje.

ASD diagnosis situation Year autism is first recognised in the country: first parents’ association since 1995, Macedonian Scientific Society for Autism (MSSA) 2000

ASD epi-information presented by country in the sub-regional meeting No national register, but MSSA has its own register with 110 ASD cases (underestimation). It should be expected 12240 if we estimate 60 in 10000.

ASD Research Several research projects: epidemiological, biologic…

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD(day centres, support employment, housing,…): None available

ASD Awareness Research project on information for autism in Macedonia: "Tolerance or Acceptance", pamphlet: “Autism in Macedonia", several publications

Further comments Strong Body: Macedonian Scientific Society for Autism (MSSA) doing research and awareness. Mostly ICD-10 and DSM-IV for diagnosis - last year they started to use ADIR no ADOS yet. Many misdiagnosed cases are labelled as schizophrenia or mental retardation. Most cases are not educated and live with their parents; severe cases are institutionalised in big institutions.

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Malta

Profile of the person presenting country’s information: Two presenters: University Professor and parents’ association Programme Manager

ASD epi-information presented by country in the sub-regional meeting Evidence based. Year of registration 2009, born in 2006 n=3546. No. of children within the autism spectrum registered =92 /2.60% / 1:39

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Very few available

Comments Therapy: a small percentage are referred to physiotherapist, almost all referred to occupational therapist – sensory integration and profiling; attention issues, all referred to speech pathologist; parent workshops. The ASD programmes are organised within the National Autistic Society’s (UK) SPELL framework and utilises the TEACCH approach and PECS. Partnership with parents through observation of sessions, feedback, parent groups, links maintained with schools. Yearly evaluation and assessments by multidisciplinary team. Two specialised programs: STEP (Structured Training and Education Program) and STYLE (Specialised Training for Youths’ Lifestyle Enhancement)

ASD Awareness Study on awareness at schools, university with interesting results: 39% of school children think people with ASD look different and 25% of students at university haven´t heard of ASD in their lives.

Further comments Diagnosis: usually the first point of contact is the speech pathologist. Multidisciplinary assessment: Psychologist, SLP, OT, Autism specialists – CHAT, DISCO, ADOS, PEP

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Moldova

Profile of the person presenting country’s information: Family physician

ASD diagnosis situation Year autism is first recognised in the country: about 1993-1994 There is no data regarding autism, age of diagnosis and months of delay for diagnosis since first consultation, data presented comes only from the presenter’s experience, as a family physician and a physician who is contacted regarding the diagnosis and behavioural intervention for children with autism. The youngest child I saw was diagnosed at 2,5 years and the oldest – 5 years. The delay of diagnosis was from 7 months to 1,5 year and more. Data were confirmed by the chief of the University of Medicine and Pharmacy from Moldova Psychiatry Department

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates) 20.000 children; 10.000 adults (no official data) Data taken from UNICEF report: there are 817000 children in the Republic of Moldova and 500000 of them are aged 7-16 year old

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Very few available

ASD Awareness Need of raising awareness

ASD Policies Need of legislation

Further comments According to the Ministry of Education, of the 12000 institutionalised children, 90% have parents. There are over 700 children’s special schools and boarding schools but no information about children with ASD in these institutions. "Voionicel" created with the support of Norway: 550 children received help during 7 years, prevention from institutionalisation. There is a lack of knowledge about signs and diagnosis of ASD in primary care physicians. Associations are "Defeat Autism" and Association of parents with children with autism “SOS Autism”.

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The Netherlands

Profile of the person presenting country’s information: Psychologist

ASD epi-information presented by country in the sub-regional meeting Current prevalence study (Hokstra et al)

ASD Research Several active research groups: evidence based interventions, drugs, phenotypes,...

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Some available

Comments Centres for early intervention, adolescents and adults; job coaches; waiting lists for services for adults

ASD Awareness Increasing, Dutch parents association, very low among general health care workers

ASD Policies Decreasing financial support.

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Norway

Profile of the person presenting country’s information: Psychologist

ASD diagnosis situation • Year autism is first recognised in the country: 1960 • Age at which children with autism are usually first diagnosed: Varies according to subtype:

childhood autism (3-5years); Asperger Syndrome (10-15 years) • Months of delay for diagnosis since first consultation: Priority to assistance in Specialist Health

Service: a) Serious concern for children below age six: 0-2: 4 weeks, 3-6: 6 weeks. b) Suspected /or ASD within 12 weeks.

ASD epi-information presented by country in the sub-regional meeting Prevalence of Autism Study 2008 (Sintef A7249) showed very few according to estimates: 5:10,000. A possible explanation for the low prevalence figure says that data on adult and elderly persons are missing. Public Municipal Health Control for children has guidelines for screening ASD (CHAT).

ASD Research The Autism Birth Cohort (ABC) (Stoltenberg, Schjølberg et al 2010). Autistic features in a total population of 7-9 year old children assessed by the ASSQ (Posserud 2006).Co-morbid psychiatric disorders in children with ASD diagnosis (Gjevik et al. 2010).Identifying symptoms of psychiatric disorders in people with autism and intellectual disability (Helverschou et al 2008, 2010, Bakken et al 2010). Early Intensive Behavioral Intervention (EIBI) (Eikeseth et al 2002). Cellphone as cognitive support for people with ADHD or Autism/Asperger syndrome (Steindal). A selection of references is attached in Annexes.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: Yes • Services for adults with ASD (day centres, support employment, housing,…): Not yet appropriate

Comments Services are based on the mainstream model which emphasizes inclusion and life quality. Users of long-term, coordinated health and/ or social services are entitled to an Individual Plan (I.P. 2007). I.P. contains an outline of the objectives for the person, her/his resources and the service needed. Individual Education Plan (I.E.P.) is an adjusted teaching plan for pupils who receive special education which corresponds to the school and class. “Responsibility group” is a support group for family on the municipal level. The main task for the responsibility group is to update the I.P. , and to ensure respite services to the family. “Treatment in the Natural Environment” refers to that interventions mostly are consultative work / professional support directed towards caregivers in the natural environment.

ASD Awareness The National Autism Competence Unit: Enhancement of competence in services through research and developmental work in national and regional ASD-networks: coordination, consultation, updating, lectures, clinical training and projects.

ASD Policies • Regional Autism Competence Centres: Asperger syndrome /High functioning Autism and

comorbid psychiatric diagnosis. Early Identification and Intervention. Intellectual disability and comorbid psychiatric diagnosis / challenging behaviour in all ages. Severe intellectual disabilities in all ages. Mediation and conflict handling. Visual/hearing and sensory deficits. Alternative communication systems.

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• “National network for professionals who are running psychoeducational groups for adults and

adolescents with Asperger syndrome” (Steindal et al.) • “Employment for individuals with Asperger syndrome” • A national project to increase awareness of Asperger syndrome in the Norwegian labour and

welfare administration (Steindal et al). • “National network for professionals in charge of providing supplementary services to individuals

with ASD, ID and Psychiatric disorders” (Helverschou). • Professional multidisciplinary team: “Autism Team” in Special Health Services • State Pedagogical Support system for PPT and School– regional centres • Education programs for teachers; Master level, training courses • Training courses in diagnostic methods; ADI-R & ADOS, R

Further comments The Coordination Reform 2010: will strengthen the mainstream model in demanding more cost-effective benefits in Health Services through better coordinating between services at the Specialist and Municipal level.

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Portugal

Profile of the person presenting country’s information: Two presenters: parents’ association President and University Professor.

ASD epi-information presented by country in the sub-regional meeting Evidence based. Only 1 Prevalence study, preliminary: some regions of mainland and Azores Islands. School-children 9,2 /10.000 in Mainland and 15,6/10.000 in Azores

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Some available

Comments 2009/2010 – 187 units in the schools all over the country

ASD Awareness Fear to treat persons with ASD and lack of knowledge how to treat ASD

ASD Policies UN Convention on the rights of persons with disabilities and Inclusive Education – Law 8/2008: Special article for Autism in the Law – Units of Structured Teaching with special support and therapies (psychology, speech therapy, psychomotor therapy, music, arts) in the schools. Social Welfare support for Adults (after schooling). CAO (Centres for Occupational Activities). Therapies and social activities.

Further comments The role of NGOs for Autism is fundamental in Portugal. Portuguese Federation for Autism: 11 associations offer diagnosis, assessment, early intervention, support in schools (Resources Centres for Inclusion - CRI), schools for parents, special education schools, training for families and staff. The National Health Plan doesn’t mention ASD. The National Plan for Mental care has no specific plans for ASD.

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Romania

Profile of the person presenting country’s information: University Professor

ASD diagnosis situation • Year autism is first recognised in the country: Before 1989, there were major deficiencies in both

the legislative and health care system, failing to take into account the specific characteristics of children, youth and adults with mental disorders which require educational programmes and specific support services. Some of the mental disorders were not even recognised, diagnosed and treated. Autistic children were treated as same as children with intellectual disability. The assessment was done mainly in clinics, day care centres and hospitals and they received pharmacological treatment. Patients were included in therapeutic and educational programmes for children with special needs such as intellectual disability or mental retardation. There weren’t any programmes especially designed for children with ASD.

• Age at which children with autism are usually first diagnosed: 48 months

ASD epi-information presented by country in the sub-regional meeting There are no official data on prevalence of autism cases in Romania. Children: Estimations: 3.000 – 30.000 children with ASD (Fundatia Pentru Voi, 2009). Adults: ASD in adults is not recognised by the law of persons with special needs. No estimations available. In the last few years the number of clinical cases diagnosed in the child psychiatry clinics (3 large hospitals in Romania) is higher.

Comments Lack of services and professional teams necessary to work with people with ASD; there are about 20 centres offering services for children, funded by parents, local projects based on international network of each NGO and in some cases the local institutions may support some of the costs. ASD screening is not done at the moment by national strategy, in some specific regions (where there is an active NGO) there may be a local strategy. Autism Transylvania started few months ago, at their own expense, a screening of ASD in kindergartens, on a sample of 600 children.

ASD Awareness In the last few years the major university clinics and NGO’s lobbied for creating a system of evaluation and care appropriate to people’s individual and specific needs. Both local authorities and press became involved. Treatment centres were created with help from NGOs or private institutions.

ASD Policies Absence of an adequate legislative framework; ASD in adults is not recognized by the law of persons with special needs. A law for ASD children and adults and associated disabilities passed by Senate and will be effective from January 2011 regarding the integration of health, education and social special services for persons with ASD and associated mental health disorders - (Law no. 151).Published in the National Monitor - No. 483 - 12 July 2010.

Further comments The Ministry of Labour, Family and Social Protection National Authority for People with Disability identifies 10 types of handicaps only (no ASD). Most probably the adults with ASD are included in the mental disability category. Services for adults are worse than those for children; there are only few ONG offering some type of occupational therapy for people with mental disorders. The parents of today’s ASD children are worried about the future of their children. Diagnosis: in August 2010 the Romanian adaptations of the ADI-R and ADOS were published. Education: school integration is still very low; there are no special classes of children with ASD. In few cases children with ASD are going to kindergartens or schools accompanied by a person paid by parents. "The ASD Law" (Law 151) Art 1. The purpose of this Act is to regulate the specialised services in medical, educational and social field for children and adults diagnosed with Autistic Spectrum Disorders and other disabilities associated with ASD. These services deal with early diagnosis, treatment, recovery therapy, increasing quality of life and social functioning for children with ASD and must be offered by a

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multidisciplinary team. Art 2. Specialized services which integrate medical, educational and social interventions include the following: screening, early diagnosis, psychiatric diagnosis, clinical psychological assessment, psychopharmacological treatment, specialized early interventions, cognitive-behavioural therapy, parent and family counselling. Art 3. The multidisciplinary specialized team from mental health centres can be formed as follows: child psychiatrist, clinical psychologist, psychotherapist, pedagogue, speech therapist, educator and social worker. Art 4 . (1) Screening is for children between 0-3 years of age and is done in conformity with the norms approved in the present law. (2) All persons diagnosed with Autistic Spectrum Disorders and other disabilities associated with ASD have free access to specialized services stipulated in Art.2. Art 8. … (2) Specific standards for training in psychotherapy for children with ASD and other disabilities associated with ASD are the following:(a) Standards for continuous short-term training to specialize in therapy for Autistic Spectrum Disorders and other disabilities associated with ASD for the professionals certified in CBT.(b) Standards for training in specialized intervention for Autistic Spectrum Disorders and other disabilities associated with ASD for the multidisciplinary team described at Art 3.

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Slovakia

Profile of the person presenting country’s information: Representative of Social Services

ASD diagnosis situation

• Year autism is first recognised in the country: approximately 1985 • Age at which children with autism are usually first diagnosed: 48 • Months of delay for diagnosis since first consultation: 5

ASD Research Only one genetic study

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): None available

Awareness There has been quite good progress in autism awareness

ASD Policies There are no specific ASD policies in Slovakia. However there are policies for mentally handicapped people.

Further comments Children with AD/ASD attend special schools. Our organisation "Society for Help for people with Autism, Slovakia" has mapped the situation of treatment and services for people with AD/ASD in the scope of their life. The biggest concerns are early intervention and the situation of people with AD/ASD after they have left the schooling system

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Slovenia

Profile of the person presenting country’s information: Two presenters: Paediatrician and Social Worker

ASD diagnosis situation • Year autism is first recognised in the country: until 2005 very few patients were diagnosed as

having ASD; since then systematic work in the field has been developed at the Paediatric Hospital in Ljubljana; since 2009 multidisciplinary team including developmental paediatrician, child psychiatrist, psychologist, special education teachers, occupational therapist, social worker and nurse work on diagnosing and interventions; since 2005 about 120 new patients have been diagnosed per year

• Age at which children with autism are usually first diagnosed: average for last 5 years: autism at 5,5 years and Asperger’s syndrome at 8,9 years.

• Months of delay for diagnosis since first consultation: currently process of diagnosis is finished in approximately 2 months.

ASD info/figures presented by country in the sub-regional meeting Approximately 120 diagnoses are made at Paediatric clinic each year. There is no official statistic data about the number of diagnosed cases in Slovenia.

ASD Research There have been two big studies in the field of ASD supported by Slovenian Research Agency: 2007-2010: Biochemical factors in developing autism and 2009-2011: Genetic polymorphism in metabolic pathways in autism (still ongoing).

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend to "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Just started in the

form of Social Skills Group and case manager programme provided by special education teacher and social worker.

Comments At the Paediatric Clinic there are following intervention programmes: individual therapeutic interventions by psychologist, occupational therapist and special education teachers, social skills groups for children and adults, case manager programme provided by special education teacher and social worker and parent support group. Early intervention programme in the form of Applied Behavioural Analysis has just been started. Schooling: there are 3 preschool units for children with ASD as part of institutions for children with speech and hearing disorders.

ASD Awareness The team at Paediatric Hospital and NGOs (Centre for autism, Institute of ASD and Association for autism DAN) working in the field of raising public awareness.

ASD Policies National guidelines in the field of ASD were formulated by a group of professionals and a parent at Ministry of Health in 2009.

Further comments Health care programme for children with ASD was approved by the Ministry of Health in 2008; the programme for adults with ASD has been just approved. Children with ASD are recognised as a separate group of children with special needs in the novelty of the law for education of children with

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special needs that is in preparation at the Ministry of Education. This is a big step forward to specific schooling of children with ASD according to their special needs.

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Spain

Profile of the person presenting country’s information: Psychiatrist

ASD diagnosis situation • Year autism is first recognised in the country: Around 1977 when the first parents association was

founded. • Age at which children with autism are usually first diagnosed: 25-56 months AD // 35-145 months

AS (Study GETEA 2004) • Months of delay for diagnosis since first consultation: 32 months AD and 68 for AS diagnosis

(Study GETEA 2004)

ASD epi-information presented by country in the sub-regional meeting Evidence based. Lack of public data but availability of frequency data based on screening programs pilot studies with ASSQ, MCHAT, CAST, and data varies from 1/100 (Asperger Disorder); 1/576 - 1/300 (ASD); 1/670 (Asperger Disorder), 1/294 (ASD)

ASD Research Strong groups carrying out research studies at different Universities and Hospitals but still lack of sufficient funding to continue several studies

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No (some but not most).

Spain is a decentralized State. • Services for adults with ASD (day centres, support employment, housing,…): Depends on region

but not enough in most regions.

ASD Awareness U.N. (2007) – April 2nd// More people in Spain now know about autism

ASD Policies National guidelines published by the (National) Institute of Health Carlos III, Ministry of Health and the Agencia Lain Entralgo

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Sweden

Profile of the person presenting country’s information: Psychiatrist. Director of the National Society of Autism and Asperger syndrome in Sweden.

ASD diagnosis situation • Age at which children with autism are usually first diagnosed: 36-48 months • Months of delay for diagnosis since first consultation: Most children still found too "late”

ASD epi-information presented by country in the sub-regional meeting Epidemiology study in Stockholm: Prevalence (1%)--Corresponds to ≈ 250 children per year across the county, equivalent to about 70 children per year in Southeast Stockholm. Findings 79 children- 2009 (referrals to NPR).

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes • Most children with ASD attend to "ordinary schools" with special support: Yes • Services for adults with ASD(day centres, support employment, housing,…): Yes

ASD Policies Strong policies but considerable difficulties due to: Lack of knowledge about autism/ Asperger syndrome among professionals in schools, social welfare system, primary health care, employment services etc and lack of money; communities not acting in accordance with the law for economic reasons. Act Concerning Support and Services for Persons with Certain Functional Impairments (LSS--Entitlement Law): local authorities responsible for services 10 measures: 1) Advice and other Personal Support from experts; 2) Personal Assistance; 3) Companion Service; 4) Contact Person; 5) Relief Service at home; 6) Short stay away from home; 7) Short period of supervision for schoolchildren over 12; 8) Living arrangements in a family home or in a residence with special services for children and adolescents; 9) Residence with special service for adults or other specially adapted housing for adults; 10) Daily activities for people of a working age who have no gainful employment nor are undergoing training.

Further comments National Society of Autism and Asperger founded in 1973. Diagnosis: NPR-Team Model - best available instruments and methods of assessment (gold standard)- developmental history, ADI-R, ADOS, Vineland, MPR, WISC IV, etc)

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Switzerland

Profile of the person presenting country’s information: Pedagogue

ASD Research Project of early Intervention with social department of Switzerland, building competence centres in purposeful intervention in the first years of Life (ABA, Mifne, TEACCH,)

ASD Services • Systematic ASD Screening Program at early ages in the region/country: No • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): Yes

ASD Awareness Autismus Switzerland has budget for promotion and integration of autistic people

Further comments Budget Autismus Switzerland: 680‘000 Euro, 345‘000 Euro from social department, remaining from fundraising and donations. Employment: Protected workplaces in institutions and trainee places in vocational training factories. Project from autismus link following „Specialisterne“ (Denmark) in job coaching in the open labour market, occupation clarification work, training and structure of own fields of works, first in IT later in authority profile of ASD people (start project in March 2011). Living situation: Institutions for autistic adults with approx. 140 workplaces, professional approx. 100 Pilot project „Assistenzbudget“ – autistic people employ assistants Autistic individuals life independently in own apartments – with company and/or cared for living

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Ukraine

Profile of the person presenting country’s information: Psychiatrist

ASD diagnosis situation. Age at which children with autism are usually first diagnosed: Over 36 months

ASD epi-information presented by country in the sub-regional meeting Estimated (based on international studies rates): The prevalence of ASD in different regions of Ukraine fluctuates in a wide range: from 4.2 to 41.6 per 100 000 child population. The morbidity of autism spectrum disorders in Ukraine is growing rapidly since 2006: in 2007 - 28.2%, 2008 - 32%, 2009 - 27.2%. From 2006 to 2009 the incidence increased 2.2 times and the end of 2009 amounted to 252.0 per 100 000 child population. The prevalence of autism spectrum disorders in Ukraine is steadily increasing: in 2006. To 27.2%, in 2007. - 19.1%, in 2008. - 20.2%, in 2009 - 20,0%. From 2005 to 2009 this figure increased by 2,2 times and was 1388,0 people.

ASD Research The research consortium is engaged in scientific project «Copy number variations conferring risk of psychiatric disorders in children». The project is funded by the European Commission within the 7th Framework Program on Research, Technological Development and Demonstration. Scientific Program of the EU which is addressed by the project: HEALTH-2007-2.2.1-10: Childhood and adolescent mental disorders.

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes but only in major

industrial regions. • Most children with ASD attend "ordinary schools" with special support: No • Services for adults with ASD (day centres, support employment, housing,…): No

Comments The screening program is available only in major industrial regions (Kiev, Lviv, Dnipropetrovsk, Zaporizhia) of the country. No public rehabilitation centres. Help is only available in offices of psychiatric hospitals. Community-acquired institutions are established by relatives. Therapy for the program's ABA and TEACCH are inaccessible. In Ukraine are not enough psychologists and speech therapists who have the necessary training; Children with autism receive the allowance for disabled children less than 18 years. The amount of payments does not exceed 100 € per month. The burden of family expenditure is very hard

ASD Awareness ASD awareness of parents and teachers is high. This was achieved by a large number of publications for parents in the press and electronic media. In Ukraine there are several sites for parents. Awareness among primary care physicians is low. Family doctors are not competent in the diagnosis of mental disorders in children.

ASD Policies In 2009, a Clinical Protocol of Medical and Social Care for Children with ASD was approved by the Ministry of Health of Ukraine: Early intervention (2 to 3 years); careful and prudent use of drug therapy, whose effectiveness is proven; establish compliance and active participation of the family; carrying out any form of intervention only in the outpatient setting.

Further comments Diagnosing of ASD remains amiss in most regions in Ukraine. The level of diagnosis before the age of 3 years remains low. Positive results achieved in only seven regions: In these regions, morbidity rates

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in 2009 fluctuated in the range of 3.8 to 9.8 per 100 000 child population. In other regions much of the parents of patients do not seek psychiatric care to children's psychiatrists, or are not treated in time, or get care of child neurologists in private services. Diagnosing of ASD was unsatisfactory in most regions of Ukraine; in these regions morbidity was less than 2 per 100 000 child population. History of Autism in the country: Ukraine inherited its national health system from the USSR. The Soviet system was conceived as a part of a massively expensive socialist planning economy that was generally delivering poor value for money. During the years of independence the health system was not a state priority and was chronically under-funded. In 2006, the diagnosis of autism began in Ukraine in accordance with the diagnostic criteria of ICD 10. In the four regions of the country there are public organisations, created by the parents of children with autism. In 2008, ASD was recognized by the Ministry of Health priority of child psychiatry services.

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United Kingdom

Profile of the person presenting country’s information: Paediatrician

ASD epi-information presented by country in the sub-regional meeting Evidence based: 116.1 per 10000 Total ASD/ 24.8 per 10000 Narrow Autism (Baird 2006)

ASD Research Research has been always a driver in autism in UK

ASD Services • Systematic ASD Screening Program at early ages in the region/country: Yes (pilot studies, not

universal) • Most children with ASD attend "ordinary schools" with special support: Yes • Services for adults with ASD (day centres, support employment, housing,…): Yes

ASD Awareness Several campaigns

Further comments • Diagnosis of young children: child development teams (paediatrician, speech and language

therapist, possibly others). Older children or adolescents: Child and Adolescent Mental Health services.

• Adults are a huge challenge; awareness; • Adult Autism Bill; service capacity//Multidisciplinary team working is best practice; assessment

contexts; standardised instruments; parental opinions// • Teams able to undertake medical investigations, assess co morbidity; recognition of need

increasing; ongoing health management? • National Autism Plan for Children (NAPC) • National Autism Society (NAS) • Autism Research Centre (ARC)

History of Autism in the country: Developing ASD services since the 1970s. Research was a driver of improved clinical services (Rutter and others). Diagnostic services were psychiatry led; then paediatrics. Voluntary sector; National Autistic Society (Parent led). Awareness and Services developed in a publically funded healthcare system (health led) but development of education and social care led also by parents.

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Annexes to Countries Report Annex I. Research in Iceland : A selection of References Magnusson, P., & Saemundsen, E. (2001). Prevalence of autism in Iceland. Journal of Autism and Developmental Disorders, 31, 153-163. Saemundsen, E., Magnusson, P., Smari, J., & Sigurdardottir, S. (2003). Autism Diagnostic Interview-Revised and the Childhood Autism Rating Scale: convergence and discrepancy in diagnosing autism. Journal of Autism and Developmental Disorders, 33, 319-328. Jonsdottir, S.L., Saemundsen, E., Asmundsdottir, G., Hjartardottir, S., Asgeirsdottir, B.B., Smaradottir, H.H., Sigurdardottir, S., & Smari, J. (2007). Follow-up of Children Diagnosed with Pervasive Developmental Disorders: Stability and Change During the Preschool Years. Journal of Autism and Developmental Disorders, 37, 1361-1374. Saemundsen, E., Ludvigsson, P., Hilmarsdottir, I., & Rafnsson, V. (2007). Autism spectrum disorders in children with seizures in the first year of life – A population based study. Epilepsia, 48, 1724-1730. Saemundsen, E., Ludvigsson, P., & Rafnsson, V. (2007). Autism spectrum disorders in children with a history of infantile spasms – A population based study. Journal of Child Neurology, 22, 1102-1107. Weiss, L.A., Yiping, S., Korn, J.M., Arking, D.E. Miller, D.T., Fossdal, R., Saemundsen, E., Stefansson, H., Ferreira, M.A., Green, T., Platt, O.S., Douglas, M.R., Walsh, C. A., Altshuler, D., Chakravarti, A., Tanzi, R., Stefansson, K., Santangelo, S.L., Gusella, J.F., Sklar, P., Wu, B-L, & Daly, M.J., for the Autism Consortium. (2008). Association between microdeletion and microduplication at 16p11.2 and autism. New England Journal of Medicine, 14;358(7), 667-675. Saemundsen, E., Ludvigsson, P., & Rafnsson, V. (2008). Risk of autism after infantile spasms – A population based study nested in a cohort with seizures in the first year of life. Epilepsia, 49, 1865-1870. Saemundsen, E., Juliusson, H., Hjaltested, S., Gunnarsdottir, T., Halldorsdottir, T., Hreidarsson, S., & Magnusson, P. (2010) Prevalence of autism in an urban population of adults with severe intellectual disabilities – A preliminary study. Journal of Intellectual Disability Research, 54, 727-735. Jonsdottir, S.L., Saemundsen, E., Antonsdottir, I.S., Sigurdardottir, S., & Olason, D. (2011). Children diagnosed with autism spectrum disorders before or after the age of 6 years. Research in Autism Spectrum Disorders, 5, 175-184. Manuscripts in preparation: Saemundsen, E., Magnusson, P., Georgsdottir, I., Egilsson, E., & Rafnsson, V. Changes in epidemiological features of autism spectrum disorders in Iceland. Magnusdottir, K., Saemundsen, E., Egilsson, E., & Magnusson. Co-occurring psychiatric conditions in autism spectrum disorders. Thorsteinsdottir & Gudlaugsdottir. Families of children with autism spectrum disorders – Parental and family stress, social support and access to information and services.

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Annex II. Research in Norway: A selection of References The Autism Birth Cohort: a paradigm for gene- environment – timing research. C Stoltenberg, S Schjølberg, M Bresnahan, M Hornig, D Hirtz, C Dahl, KK Lie, T Reichborn-Kjennerud, P Schreuder, E Alsaker, A-S Øyen, P Magnus, P Suren, E Susser, WI Lipkin and the ABC Study Group. Molecular Psychiatry 2010, 15, 676-680. Kiddie- Sads Reveals High Rates of DSM-IV Disorders in Children and Adolescents with Autism Spectrum Disorders. E Gjevik, S Eldevik, T Fjæran-Granum, E Sponheim. J Autism Dev Disord Published online 08 September 2010. Anxiety in people diagnosed with autism and intellectual disability; Recognition and phenomenology. SB Helverschou, H Martinsen. Research in Autism Spectrum Disorders 2010. Psychiatric disorders in adolescents and adults with autism and intellectual disability: A representative study in one county in Norway. TL Bakken, SB Helverschou, DE Eilertsen, T Heggelund, E Myrbakk, H Martinsen. Research in Developmental Disabilities 2010. Article in press. The Psychopathology in Autism Checklist (PAC): A pilot study. SB Helverschou, TL Bakken, H Martinsen. Research in Autism Spectrum Disorders 3 (2009), 179 – 195. Identifying Symptoms of Psychiatric Disorders in People with Autism and Intellectual Disability: An Empirical Conceptual Analysis. Mental Health Aspects of Developmental Disabilities. October/November/December 2008, Vol 11, no. 4. Dissertation for the degree of PhD on Epidemiology of Autism Spectrum Disorders. Maj-Britt Roccio Posserud. University of Bergen:

- Autistic features in a total population of 7-9 year old children assessed by the ASSQ (Autism Spectrum Screening Questionnaire).Journal of Child Psychology and Psychiatry 47:2 (2006), pp 167-175.

- Factor Analysis of the Autism Spectrum Screening Questionnaire..MB Possserud, AJ Lundervold, MC Steinjen, S Verhoeven, KM Stormark, C Gillberg. Autism 2008, Vol 12(1), 99-112.

- Validation of the Autism Spectrum Screening Questionnaire in a total population sample. MB Posserud, AJ Lundervold, C Gillberg. J Aut Dev Disorder 2009, 39, 126-134.

The prevalence of autism spectrum disorders. Impact of diagnostic instrument and non-response bias. MB Posserud, AJ Lundervold, SA Lie, C Gillberg. Social Psychiatry and Psychiatric Epidemiology. Vol. 45(3), Mar 2010, pp 319-327. Project on effect of training joint attention in young children with autism. An ongoing randomized control intervention study. University hospital of Ullevål, Regional Competence center for Mental health in childen and adolecents, South – East region. A. Kaale. Connie Kasari UCLA is colloborative partner. Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive behavioral treatment for four-to seven-year-old children with autism: A one-year comparison controlled study. Behavior Modification, 26, 49-68.

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Annex 5: European Autism Action Conference (Autism2010) Brochure

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