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Barriers to employment: Challenges to implementing the Reward and Fulfilling Lives Strategy

.

Dr Beatriz López

Autism Research Network

Department of Psychology, University of

Portsmouth

December 2013

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Table of Contents

1. Employment in autism .................................................................................................................... 3

1.1 Background ................................................................................................................ 3

1.2 Rewarding and Fulfilling Lives Strategy ..................................................................... 4

2. Supported Employment Programmes ............................................................................................ 6

3.1 Supported employment programmes in the UK ............................................................. 6

3.2 Are supported employment programmes effective? ...................................................... 7

3.3 Conclusions ...................................................................................................................... 9

3. Sustaining employment: Reasonable adjustments in the workplace........................................... 10

4.1 Social and communication adjustments ................................................................................. 10

4.2 Sensory adjustments ............................................................................................................... 11

4.3 Flexibility ................................................................................................................................. 11

4.4 Conclusions ............................................................................................................................. 12

4. Conclusions ................................................................................................................................... 12

5. References .................................................................................................................................... 14

© Beatriz López

This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Research Report prepared for:

Autism Board

Portsmouth City Council

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1. Employment in autism

1.1 Background

The number of people diagnosed with Autism Spectrum Disorders (ASD) has risen exponentially in

the past few decades with rates of 2 out of 10,000 in the 1970s to up to 1% (Baird et al, 2006) in

recent epidemiological studies. Based on prevalence rates in 2012 it has been estimated that there

are approximately 700,000 people with autism living in the UK (Brugha et al, 2012).

In 2009 the cost to the UK government for the approximately 500,000 adults with ASD living in the

UK was estimated at around £25 billion (Knapp, Romeo & Beecham, 2009). This cost however is likely

to have grown to £34 billion in recent years (Prof Knapp Blog, 2012). For adults with autism and

intellectual disabilities, the main three contributors to this cost are accommodation (£36,233 per

person per year), lost employment (£22,383 per person per year) and benefits (£4,950 per person

per year). In the case of adults with autism without intellectual disability there are two main

contributors to the cost: lost employment (£19,785 per person per year) and hospital services

(£14,004 per person per year) as they could not estimate the cost of benefits for this population.

These are striking figures not only because they constitute a burden to the UK economy but most

importantly because they reflect low levels of quality of life for people with autism. In the case of

adults with intellectual disability, the figures on accommodation and lost employment show that few

achieve living and financial independence. In the case of adults without intellectual disability the

figures show that few are in paid work and that they suffer from poor health.

This is further confirmed by studies investigating employment rates in autistic populations.

Unemployment rates in adults with autism vary across studies and country but they range from 75%

(Engström, Ekström & Emilsson, 2003) to 50% (Jennes-Soussens et al, 2006). Those who find

employment however are likely to be in unskilled jobs with low wages (Howlin, 2000; Howlin et al,

2013; Migliore & Zalewska, 2012). This is especially surprising given that 47% of those adults with

ASD who do not have learning disabilities attend higher education (Taylor & Seltzer, 2011).

The high cost of hospital services in adults without intellectual disabilities is probably explained by

the high prevalence of mental health problems in this population. Mood disorders are a common

feature of autism with estimated rates of depression in adults without learning disabilities ranging

between 36.4% (Munesue et al., 2009) and 53% (Ghaziuddin, et al, 1998). A possible reason for such

high rates of mental health problems is the absence of paid work and daily activities. Taylor and

Seltzer (2001) found that around 25% of adults without intellectual disabilities have no regular daily

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activities and no work. The absence of paid work has been linked to deteriorating mental health and

social exclusion (Emerson & Hatton, 2008; Jahoda, 1988). Conversely, having a job has been shown to

have positive effects in adults with autism in other areas of functioning such as socialisation skills and

expression (Belcher & Smith, 1994; Wehman & Kregel, 1988)

Given the high rates of unemployment, mental health problems, lack of independence and the

associated economic costs, it is not surprising that the UK government has developed a new strategy

aimed at improving the quality of life in adults with autism and their families.

1.2 Rewarding and Fulfilling Lives Strategy

In 2010 the UK Government published an adult strategy called Rewarding and Fulfilling Lives. The

strategy aims to address five key points (NAS):

increasing awareness and understanding of autism

developing a clear and consistent pathway for diagnosis

improving access to the services and support people need to live independently within the

community

employment

enabling local partners to develop relevant services to meet identified needs and priorities.

The aim is for local councils to implement this strategy by the end of 2013. It is too early to evaluate

the impact that this strategy has had in the lives of people with autism and their families. However,

anecdotal evidence from Portsmouth City Council and Hampshire County Council, suggests that the

publication of the strategy has had a range of positive outcomes already. First, the consultation

events organised by local councils have provided a forum where the voices of people with autism and

their families have been heard. Second, the development and implementation of the strategy has

required communication across different services which has resulted in increased coordination and

communication. A particular area of improvement has been seen in the concerted efforts that have

been made to integrate adults and children services. Thirdly, specific diagnostic pathways and

services have been put in place to facilitate access for practitioners, adults with autism and parents

to these services. Finally, requests from both large and small companies for training events focused

on autism have surged nationwide.

The effectiveness of the implementation of the strategy in terms of employment is more difficult to

assess at this stage as no research has been conducted to investigate whether employment rates

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have increased as a result of improved access to employment programmes and Job Centres.

However, an indication of the recognition of the importance that employment has on the lives of

people with autism and their families can be seen in the amount of research conducted prior and

after the publication of the strategy. As can be seen in Table 1, there has been a steady increase in

the number of publications focused on employment in autism since the 1980s. While in the decade

spanning from 2000 to 2009, only 29 publications were identified in a Google Scholar search (search

terms: Autism and Employment in the title), in the first 4 years since the publication of the strategy

the number has risen to 49. In fact, the last 4 years alone there have been more publications on

employment in autism that in the previous 30 years.

Table 1. Number of publications containing the terms ‘Autism’ and ‘Employment’ in the title from

1980 to November 2013 (data taken from Google Scholar).

Despite the positive impact that the strategy has had, in terms of employment, the

implementation of the strategy has been difficult. First, resources in Job Centres are stretched and

hence providing additional support for people with autism is proving difficult. Second, although Job

Centres have specialist programmes for people with intellectual disabilities, these programmes are

not accessible for adults without intellectual disabilities who do not meet the criteria for Disability

Support Allowance (DSA). This poses a significant risk for adults with autism who do not have

intellectual disabilities and for the success of the implementation of the strategy. Already Taylor and

Seltzer (2011) identified that adults with autism without intellectual disabilities are particularly

2

17

29

49

0

10

20

30

40

50

60

1980s 1990s 2000s 2010-2013

Increase in research into employment in autism Number of publications - Autism + Employment in title

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vulnerable as few services are available to them and, as a result, are more likely to develop mental

health problems from lack of regular daily activities (Taylor & Seltzer, 2011).

There are three key issues that need to be addressed in order to successfully meet the aim of the

Rewarding and Fulfilling Lives strategy to increase employment rates in the autism population, 1)

improved education and careers aspirations, 2) development of supported employment programmes

and access to Job Centre services for people with and without intellectual disabilities and 3) facilitate

the implementation of minor adjustments in the workplace to improve job retention. This article

focuses on needs 2 and 3, as these are the focus of the Rewarding and Fulfilling Lives Strategy.

2. Supported Employment Programmes

3.1 Supported employment programmes in the UK

Research has identified a range of recommendations in order to develop successful supported

employment programmes. Research shows that it is advisable to conduct an evaluation of skills sets

(Hagner & Cooney, 2003), that the person is trained in interviewing techniques by providing mock job

interviews (Hillier, et al, 2007) and by providing the person with practice on describing how their

skills match a job specification (Hurlbutt & Chalmers, 2004). Finally, it has been suggested that it is

important to identify what would be the most appropriate job for the person’s skills (Müller, Schuler,

Burton & Yates, 2003). Research also shows that work ‘tasters’ are also important to ensure

sustainment of employment (Müller, et al, 2003). Once the person is employment it is important to

conduct an evaluation of adjustments needed in the workplace (Müller, et al, 2003), assess the

training needs of the employer and co-workers (Hillier, et al, 2007) and provide continuous support

(Trach & Mayhall, 1997). The evaluation of the length and type of support needed should be assessed

by support staff according to individual needs (Wilczynski, Trammell & Clarke, 2013).

There are a variety of employment schemes already in place in the UK for people with ASC. Few

schemes meet all the recommendations listed above and some go beyond these recommendations.

These schemes tend to fall into two categories; those that offer pre-employment training and those

that, additionally, offer support once the person has been employed. In the first category existing

schemes take a holistic approach by focusing not only on employability skills such as interviewing

techniques, occupational choice or job search skills but also focusing on generic skills. For instance,

he Moving Forward Project (Glasgow) and ‘Access to employment’ schemes aim to help develop

social confidence and independent living skills in individuals with autism or Asperger syndrome to

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ensure the person is not simply placed in a situation without knowledge or the independence to

succeed. In addition, the ‘Access to employment’ programme also focuses on emotion management,

coping strategies and life planning and organises social outings to encourage development of social

skills. An alternative approach, such as that taken by the Brighter Horizons Project is to secure

voluntary placements for adults with autism in order to develop work-related skills that will make

them more employable when applying for a job in future.

One of the most comprehensive existing supported employment programmes in the UK is the

Prospects project developed in 1994 with the collaboration of The National Autistic Society’s

Prospects. This scheme offers a flexible package of pre-employment training including

communication skills for the work place, job searching, CV writing and interview skills, disability

awareness and occupational choice advice. The programme also offers work experience whereby a

short-term ‘taster’ session is arranged. Once in employment, a support worker is provided on a full-

time basis for the first 2-4 weeks of employment. This support is steadily reduced over time. The

support worker ensures the employee understands the social and occupational requirements

associated with the job and also advises employers on how to deal with problems and prevent them

from arising. Regular meetings with the employee, line manager and support worker take place.

There are other programmes, such as the one developed in Surrey, that also provide continuous

support once the individual has gained a full-time employment.

3.2 Are supported employment programmes effective?

Existing evidence regarding the effectiveness of employment programmes is scarce. As Roulstone,

Harrington and Kwang Hwang (2013) point out there are few independent evaluations of the

effectiveness of employment programmes as these are done primarily by the UK Department for

Work and Pensions. A systematic review conducted by Westbrook et al (2012) for the Campbell

Collaboration initially identified 75 studies relating to employment in ASD. Closer inspection however

revealed that the majority of these studies were either not evaluating a specific intervention,

measured outcomes not relating to employment, presented case studies only, lacked a comparison

sample or included participants without ASD. The final selection included only two studies. The first

study was conducted by García-Villasamar, Ross and Wehman (2000) and evaluated the effectiveness

of supported employment in the community relative to sheltered employment. They found that

there was no significant decrease in autistic symptomatology in either of the two groups. In a 5-yeard

follow-up study however they found there was a meaningful improvement in quality of life of those

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adults that had employment in the community relative to those in the sheltered employment

programme (García-Villasamar, Wehman & Navarro, 2002).

The second programme included in the systematic review evaluated the National Autistic Society

‘Prospects’ programme mentioned in the previous section. This programme has been evaluated in

two different studies. The first study measured outcomes over a period of two years (Mawhood &

Howlin, 1999) and the second study evaluated long-term effects of this support after 8 years (Howlin,

Alcock & Burkin, 2005). The results from the two-year study revealed that 63.3% of individuals who

had a support worker had paid employment, compared to 25% of the twenty adults who were

provided no support. Additionally, the majority of line managers stated that they found the support

workers very helpful, with four managers saying that without them, the employee would not have

coped. The number of hours spent where the support worker was needed reduced from 23.82 hours

in the first month of employment, to only 5.21 hours in the fourth month of employment. As a result,

the costs of employing a support manager, although initially high, reduced significantly over time.

Furthermore, several employers were also willing to take more than one employee with ASC because

of their previous positive experience. Overall, 61.1% of individuals with autism found the scheme

very helpful.

An eight-year follow up study evaluated whether the employment scheme continued to run

successfully (Howlin, et al, 2005). Findings showed that the number of new jobs had steadily

increased year by year, with 58% of clients securing permanent jobs, therefore displaying a sense of

commitment and ability to successful contribute to the business. Additionally, clients had found jobs

within a range of sectors such as government and public sectors, charitable organisations and large

private companies. Feedback after the eight years of taking part in the employment scheme showed

satisfaction levels were high. The number of participants living independently had in fact increased

from 25 to 34, showing the scheme had improved not only employment aspects of life, but has also

given individuals the confidence to develop independence in their personal lives. As well as

improving the lives of the people with autism, the scheme had also positively impacted the

employers. As a result, the scheme’s early level of success had been steadily maintained over the

eight years. Salaries had increased, contracts had become permanent, reliance on benefits had

decreased and overall job satisfaction was high. Some problems did arise in the workplace, however

the majority of these were relatively easy to deal with as they were due to a lack of knowledge about

autism, which the support worker was able to correct.

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Regarding cost-effectiveness, Howlin et al (2005) concluded that despite gaining funding and

donations to financially support the project, the expenditure was still high after the eight years.

Mavranezouli et al (2013) however in a systematic cost-effectiveness analysis of the programme

using a decision-analytic economic model found the programme to be cost-effective relative to

standard care. In particular they found that the programme costs £18 for additional week of

employment but that that it ‘produced better outcomes at a lower cost’.

3.3 Conclusions

In conclusion, studies have shown that people with autism are extremely capable of full time

employment and, with the right support, employees and employers can successfully work together.

There are already a variety of schemes available in parts of the country to aid individuals with autism

who wish to obtain employment. These schemes are highly effective as shown by the number of

people who actually achieve full time paid employment with the support of the programme. It is

recommended to include the positive aspects of each existing programmes, for example, providing

pre-employment training, work experience and one-to-one support and as this will help build

confidence People with autism need support and help or, at least, to know that help is available

when needed, this could be as simple as a phone call or meeting once every few weeks to ensure

both the employee and employer are happy. Also, organising social events outside of the programme

has proven to increase confidence and the social skills of individuals, which are vital to successfully

obtaining job and should be taken into consideration when building a new employment scheme.

Improving social skills may additionally benefit areas that are connected to employment, for

example, if a person is able to socialise with their colleagues it would inevitably improve job

satisfaction. In addition, evidence shows that voluntary work placements positively impact on the

ability of people with autism to secure jobs in the future.

Surprisingly, although evidence shows that supported employment programmes are not only cost-

effective relative to standard care, but have a very positive impact on the quality of life of people

with autism, few programmes are currently available for people with autism living in the UK.

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3. Sustaining employment: Reasonable adjustments in the workplace

Despite the many qualities of people with autism such as attention to detail, honesty, persistence

and reliability (Howlin, 1997), people with autism find it difficult to hold a job (Howlin, 2000), switch

jobs often and have difficulties adjusting to job settings (Hurlbutt & Chalmers, 2009). Adults with

autism are also more likely to lose their employment for behavioural and social interaction problems

rather than inability to perform the job (Dew & Alan, 2007). According to Hurlbutt and Chalmers

(2009) the difficulties encountered go way beyond the skills needed to fulfil the job role. Difficulties

relate to social aspects of the job such as understanding social rules, misunderstandings and

communication problems. Sensory issues (i.e., noise and lighting) also had a negative impact on the

ability to perform the job..

The Autism Act (2009) and Equality Act (2010) specify that employers have the duty to make

reasonable, necessary adjustments in the workplace for people with special needs and autism.

However, little research has been conducted to assess the extent to which are the precise

adjustments needed for people with autism, or the extent to which employers make these

adjustments. Anecdotal evidence suggests that this may not be always the case as evidenced by

cases of adults with ASD leaving employment and filing for compensation (The Courier, 27 Feb 2013).

To ensure sustained employment it is therefore important to individually assess the needs of the

adult with autism so that reasonable adjustments can be made. Three areas are likely to create

difficulties in the workplace 1) Social and communication issues, 2) Sensory issues and 3) Issues

relating to planning and flexibility.

4.1 Social and communication adjustments

Idioms, metaphors and words with double meanings are often misunderstood by people with autism

(Rundblat & Annaz, 2010, Happe, 1995; Gibson, Adams, Loctkton & Green, 2013). Hurlbutt and

Chalmers (2009) recommend having a mentor available at the workplace to help explain situations

where communication is required. It is also recommended that supervisors are direct in their

communications and verify that the employee has understood any instructions (Hagner & Cooney,

2005) and that expectations about productivity, breaks and rules are made explicit (Hurlbutt &

Chalmers, 2009). In terms of their relations to other employees, Hagner and Cooney (2005) found

that most employees described their co-worker with autism as socially interactive although most of

these social interactions were initiated by the employees without autism, which suggests that

awareness training to co-workers is advisable.

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4.2 Sensory adjustments

Sensory abnormalities are a common trait in ASC with people and these have been shown to be

already present in the first two years of life (Dahlgren & Gillberg, 1989; Baranek, 1999) and across

the life-span (Billstedt, Gillberg & Gillberg, 2007; Ben-Sasson et al, 2009). More importantly sensnory

issues have been identified as a particular factor preventing employment retention (Hurlbutt &

Chalmers, 2009). It is difficult to make recommendations regarding sensory adjustments as individual

needs vary widely within the spectrum. Suggested reasonable adjustments needed may include

adjustments to lighting, acoustics and working space. Lighting can make a big difference for people

on the autistic spectrum. If possible, it is best to avoid fluorescent lighting as it cycles on and off 60

times per second, and for someone with hypersensitivity to visual stimulation this can feel like a

strobe light (Davidson, 2009). Hence the use of lights and lamps that reflect upwards rather than

downwards it is recommended (Davidson, 2009). Alternatively, it is recommended to focus on

natural lighting as transparency of windows and doors would not only make the room brighter, but

also help to create an easier transition between the work spaces (Vogel, 2008). According to one

study, acoustics were ranked as the most influential architectural factor when it comes to autism

(Mostafa, 2007). Sound proofing of a work place can be too costly, however background noises, such

as electrical noise, can be controlled or removed quiet cheaply. Keeping buildings as free from odour

as possible helps to lessen the distractions and sensory overload. It is advised to use odour free

cleaning chemicals and fresheners (Davidson, 2009).

While it has been proposed that it is beneficial to have private, quiet areas were the person with

autism may go when feeling overwhelmed (Herbert, 2003). Segregating people with autism by

assigning them separate rooms can lead to them feeling different to the majority (Madriaga, 2010).

4.3 Flexibility

The recently launched Diagnostic Statistical Manual, DSM-V (APA, 2013) includes as one of the three

diagnostic criteria for ASD, insistence of sameness and difficulties with transitions. Indeed there is

wide empirical evidence of flexibility impairments in autism (Ozonoff, Pennington & Rogers, 1991;

Hill, 2004). Due to these difficulties adults with autism have difficulties adapting to changes that take

place in the workplace. Several recommendations of minor adjustments have been put forward.

Research by Hagner and Cooney (2005) suggests that people with autism benefit from having

consistent work schedules rather than shift schedules. Organizers have also been shown to help with

helping employees with autism to keep track of tasks (Hagner & Cooney, 2005). These can take the

form of visual individual work systems (Hume, Loftin & Lantz, 2009) or Personal Digital Assistants

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(PDAs; Burke, Andersen, Bowen, Howard & Allen, 2010). Providing options for structured activities

during breaks has also been shown to be beneficial (Hagner & Cooney, 2005).

4.4 Conclusions

Changes and adjustments to the workplace do not need to be drastic and expensive in order to give

more comfort to those with autism. Reducing sensory overload by trying the following, is a positive

start to help improving the lifestyles of autistic people: Softer lighting, reduction of background

noise, visual signs, and providing a quite place should help the person with autism to feel more

comfortable. Also providing a mentor in the workplace to assist with communication issues is

advisable.

One of the difficulties in making adjustments in the work place is that there is wide heterogeneity in

autism across domains (Valla & Belmonte, 2013). It is important therefore to develop assessment

tool that allow evaluating individual adjustments needs effectively rather than resorting to providing

generic advice to employers.

4. Conclusions

Unemployment rates in adults with ASD are high despite evidence that they have many qualities

which make them ideal for the work place and that about 50% of high-functioning adults obtain

higher education qualifications. The lack of employment opportunities for adults with autism not

only has a large impact on their quality of life, mental health and independence but also has an

impact on UK economy. It is therefore crucial that more efforts are made to make the work market

accessible to people with autism.

Several supported employment programmes are currently in place in the UK and although few have

been evaluated in terms of their effectiveness, those programmes that have show promising figures.

In particular, supported employment programmes have been shown to be financially most effective

than standard care, to lead to higher quality of life and more independence. Despite this encouraging

evidence, however, very few people have access to these programmes as they are primarily situated

in large cities such as London, Glasgow and Brighton. Future efforts need to be made to develop such

programmes in smaller cities. First though, it is crucial to conduct systematic research to determine

which features of employment programmes are most effective so that evidence-based interventions

can be developed. Also, it is important to conduct research to identify what are the barriers that

prevent local councils developing employment programmes.

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Research, policy and practice need to focus not only on how to make jobs accessible to people with

autism but also on how to increase job retention as there is evidence that people with autism find it

difficult to hold a job and shift jobs more frequently. One of the keys to higher retention rates is a

willingness from employers to make reasonable adjustments in the work place. Several services

nationwide provide autism awareness training courses which may be useful to employers. In it is

important to assess the individual needs of each employee with autism in order to make the most

appropriate adjustments for that person, as there is wide variability in the range of needs within this

population.

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