Public Services and Support for Children with Autism Spectrum Disorder and their Families

Dr. Florence Lee Consultant Paediatrician

Child Assessment Service, Department of Health, Hong Kong

July 2016

What do we know about ASD?

What are their needs?

Local services and Challenges

What do we know about Autism Spectrum Disorder (ASD)?

Changing diagnostic criteria and nomenclature

Autism, Autistic features, Autism spectrum disorder………………

Pervasive developmental disorder (PDD)

Asperger syndrome

自閉症，自閉症徵狀/傾向，自閉症譜系， 孤獨症 ……………

廣泛性發展障礙

亞斯伯格綜合症，亞氏保加症

DSM-5 Diagnostic and Statistical Manual of Mental Disorders

Autistic Disorder, Asperger’s Disorder and

Pervasive Developmental Disorder NOS are subsumed under the diagnosis of “Autism Spectrum Disorder” (ASD)

American Psychiatric Association, 2013

- specifier

- modifier

- level of severity

A neurodevelopmental disorder, characterized by patterns of significant impairment and deviance in the development of

– social, emotional, communicative, and cognitive skills,

– with presence of restricted, repetitive patterns of behaviors, and interests

Arise in the early developmental period

Heterogeneity of symptoms

• ASD symptoms – a wide range of behavioural syndrome

expressions

– core symptoms, age of onset, associated features, course of development, and levels of severity

• Associated comorbidities

Comorbidities

Cognitive development

– 38% intellectual disability

– 24% borderline intelligence

– 38% normal intelligence Taylor et al 2013

• Cognitive profile is typically uneven

- Difficulties in attention, complex language abilities, working memory and other executive skills

- Strengths in sensory perception, rote learning, visual-spatial problem solving and simple language skills

• Savant skills in some individuals

– Exceptional skills involving areas of music, arts, calendar calculation, visual-spatial/ mechanical skills ……………………..

Epilepsy – 11-39%

American Academy of Ped Council on Children with

Disabilities, 2007

Sleep problems – 50-80%

Johnson et al 2007

Behavioural problems in low functioning children

• Hyperactivity

• Aggression

• Emotional outburst (rigidities, stereotypies)

• Sensory seeking (tactile, vestibular)

Behavioural problems in higher functioning children

• Increasing load on social competence

• “Rigid, complicated, odd and not able to mix with peers”

• Failure to understand pragmatic aspects of language results in a chain of misunderstandings

• Occupational life is much less structured with higher demand on social perception and competence, pragmatic language and behavior organization

Associated psychiatric conditions

Among high functioning adults with ASD

53% Depression

50% Anxiety

43% ADHD

24% OCD

20% Tic disorders

12% Psychotic disorder

Hofvander et al (2009) BMC Psychiatry

CDC Prevalence

https://www.cdc.gov/ncbddd/autism/data.html

Situation in Hong Kong

Child Health Survey, Dept. of Health, 2005-2006

- Self report by parents

- 0.1% of their children aged 2-14 years had autism as diagnosed by doctor

Persons with Disabilities and Chronic Diseases,

Census and Statistics Dept., 2008 and 2014

- Proxy reporting was allowed for persons aged under 12

- 0.3% , 0.7% of children aged below 15 years had autism as diagnosed by professionals (doctors or psychologists)

Central Registry for Rehabilitation, Labour and Welfare

Bureau, Sep 2013 and March 2016

- Reported on voluntary basis

- 4272 , 5689 cases (0-19 yrs) registered

Yip L. Update on autism. Public Health & Epidemiology Bulletin. 2012 Apr;21(1):11-6

Based on data from Child Assessment Service (CAS), Department of Health, in 2006 – 2010

Rising Trend

• expansion of diagnostic criteria

• raised public and professional awareness

• improved identification and reporting mechanisms

• acceptance for seeking service and support

What is the cause?

• Genetic factors

• Associated medical conditions

• Deficit in cognitive and psychological processes

· Theory of Mind · Weak central coherence theory · Executive Function

Public awareness and attitude

Thematic Household Survey on Public Awareness and Attitudes towards

Developmental Disabilities in Hong Kong

Census and Statistics Department, 2007

8096 households

Views and attitudes towards four selected disabilities were collected, including Mental retardation, Dyslexia, ASD and AD/HD

Whether they have heard of different types of childhood developmental disability

(Multiple answers were allowed)

No. of persons (‘000)

%

Yes 5156.1 94.7

Mental retardation 4888.7 89.8

Autism spectrum disorder 4958.5 91.1

ADHD 4515.4 82.9

Cerebral palsy 2636.4 60.8

No 288.1 5.3

Total 5444.2 100

Public awareness

Statements regarding integration Accepted (%)

AD/HD Dyslexia ASD MR

Agreed that children with that disability was suitable for attending mainstream primary schools

48.9 48.4 45.3 28.4

Accepted their children had classmates with the disability

74.2 87.0 82.7 80.3

Accepted the children with that disability as neighbours

79.5 94.0 90.3 89.6

Would agree to let relatives and friends know the condition of their children if their children were with that disability

95.0 95.0 94.3 94.2

Public acceptance

What are their needs and difficulties faced?

Early preschool

“non responsive” and “difficult child”

• Language problem

• Behavioural problem

hyperactive, oppositional, irritability, tantrum,

fear ................

• Feeding problem

• Toilet training

• Sleep problem

School

“aloof”, “disobedient”, “rebellious”, “inattentive” ● Social communication problem

∙ Implicit social rules in classroom and activities ∙ Making friends ∙ Victim of bullying

● Academic coping ∙ Different subjects with different demands

e.g. reading comprehension , liberal study……… ∙ Group work and projects ∙ Time management

● Behavioural problem

∙ Inattentive, oppositional, aggressive, outburst……….

Social life and family

“socially odd, gets into conflicts………”

• Social life and leisure

• Family relationship

• Friendship

• Dating and marriage

• Management of finance, household…..

Work

● Finding job ∙ Suitable job, Job interview

● Work coping

∙ Interpretation of work instructions ∙ Work relationship with employer and partners ∙ Adaptability to changes and crisis management

Potential strength in work

∙ Paying great attention to detail ∙ Reliability and loyalty ∙ Technical ability & specialist skills e.g. IT ∙ Detailed factual knowledge and excellent memory

Needs

• Correct information and advice

• Timely identification

• Evidence based intervention

• Acceptance and support • Family

• School

• Society

• Hope

Local Services and

Challenges

Early identification

∙ Universal screening?

∙ Under/ Over - diagnosis?

∙ Child appear “normal”

∙ Changing symptoms, fluctuating impairment

Family Health Service, Dept of Health Developmental Surveillance for 0 to 5 years

• Alerting parents to the various aspects of child development and empowering them to promote & monitor their child’s development

• Providing a basis for discussion of developmental issues between health professionals and parents

• Recording the developmental profile of the child for continuous monitoring

• Timely identification of developmental problems or areas of concern

Diagnostic Evaluation

● Clinical diagnosis

∙ Developmental history

∙ Parent and teacher report

∙ Clinical observation

∙ Semi-structured/ standardized tools

● Associated comorbidities/ differential diagnosis may mask the diagnosis

● Very young, extreme low/high functioning

Child Assessment

Developmental-Behavioural Paediatrics

∙ Child Assessment Service, Department of Health (6 centres)

∙ Duchess of Kent Children Hospital, Hospital Authority

Child Psychiatry

∙ Child Psychiatric Service, Hospital Authority

(5 regional hospitals)

Child Assessment Service

∙ Provide comprehensive developmental assessment, diagnostic formulation and rehabilitation plan

∙ Make referral for further diagnostic work up and treatment and appropriate training and educational placement

∙ Provide psycho-education and interim support for family members/ care-takers ∙ better understanding the child’s training needs,

strengths and limitation, ∙ supportive counseling in working with parents’

acceptance and reaction and stress management

ASSESSMENT SERVICE FLOWCHART

Preliminary Interview

Public health nurse will conduct interview to understand the physical, Intellectual, behavioural and learning issues of the child

Team Assessment

The multi-disciplinary team will perform assessments and Formulate rehabilitation plan for child

Referral and Follow Up

The multi-disciplinary team will arrange necessary referrals, interim support and review consultation for the child

Public education

∙ Pamphlets, fact sheets & booklets on

developmental disorders

∙ Electronic information through CAS website

www.dhcas.gov.hk

Child Psychiatry

∙ 5 regional hospitals

∙ Out-patient follow-up

∙ Training groups

Intervention

∙ What is the best practice?

∙ What is best for the individual child/ family?

∙ By whom? therapists, teachers, parents?

∙ How frequent, for how long?

∙ More is better?

∙ Evidence based?

∙ Is there a cure?

Intervention

The current mainstay of intervention for ASD lies in early identification and assessment, behavioural and educational training, social adjustment, as well as continual parental support.

Intervention

Evidence-based intervention programs focus in addressing the core deficits of ASD, including social communication, language, play skills, and maladaptive behaviours.

There is no proven cure for ASD, and medication is mainly for managing associated emotional problems such as anxiety and depression, or maladaptive behaviours such as aggressive and self-stimulating behaviours.

Early, intensive and sustained intervention with the use of multiple treatment modalities carried out in natural settings, and with active parental involvement are proven to be effective.

Complimentary and alternatives therapies, many with limited to no empirical support, are often sought for use by parents of children with ASD

(Levy & Hyman, 2015).

Preschool Rehabilitation Social Welfare Department (SWD)

EETC Early Education Training Centres

IP/ICCC Integrated Programme in KG cum NNY

SCCC Special Child Care Centres

some with residential service

OCCC Occasional Child Care Centre

Subvented services run by NGOs

For Children on the Waiting List of Subvented Pre-school Rehabilitation Services

• Training Subsidy Programme

• Pilot Scheme on On-site Preschool Rehabilitation Services 2015-16

Free quality kindergarten education policy 2017/18

• Stengthen support for needy students

School support

Education bureau (EDB)

Special schools For children with Intellectual Disability

Mainstream schools Educational support by school based

educational psychologist, speech therapist,

social worker

Outsourced support from NGOs

http://www.edb.gov.hk/tc/edu-system/special/resources/serc/autism.html

Hong Kong Examination and Assessment Authority(HKEAA)

http://www.hkeaa.edu.hk/tc/candidates/special_needs_candidates/

Tertiary Institutions

http://www.cedars.hku.hk/sen

Adolescent and Early Adulthood Education Bureau/Social Welfare Department

Life Skill Building and Planning Transition • Pursuing higher education • Life skill training, planning for independent living • Social skills, friendship building skills,

interpersonal skills • Career planning, interview skills • Financial, budget planning • Stress and emotional management

SAHK 珍色真我

Heep Hong 「星亮計劃」高能力自閉症青年成長支 援服務計劃

Employment Labour and Welfare Bureau

Need preparation and skills to enter the society

∙ communicating with people

∙ handling works

∙ management of : finance, household…etc

Employment Labour and Welfare Bureau

• Open Employment Vs Supported Employment

• SWD Pilot project for Low Functioning ASD adult: DAC (support care-takers & workers) 吾懂人情計劃

iSPARK

2015-16年度《有能者‧聘之約章》及 共融機構嘉許計劃

Employment Labour and Welfare Bureau

∙ Public and employer education through Web page

and media to promote better understanding

∙ Since August 2014, the category of Autism was added to the Disability Category of “Registration Form for Job Seekers with Disabilities”, previously under “Ex-mental Illness” or “others”

https://www2.jobs.gov.hk/isps/Web/WebForm/Employer/NonMember/Course/?unit=10

http://podcast.rthk.hk/podcast/item_epi.php?pid=544&lang=en-US&id=37858

Parent Support Groups

∙ Partnership

∙ Self support

∙ Advocacy

∙ Promote public awareness and acceptance

∙ Advice on needs and policies

The Parent Association of Autistic Children in Mainstream Education (PACCME)

http://www.paacme.org.hk

Hong Kong Autism Parents Alliance (HKAPA)

∙ Established in December 2007

∙ Working group on Inclusive Education

∙ Working group on Employment

∙ Survey on use of complementary alternative medicine in children with ASD – April 2008

NGOs

∙ Subvented services

∙ Self-finance services

Looking Forward

• Timeliness and quality of services

• Awareness has improved, still needs knowledge and skills in providing support

– doctors, dentists, nurses, allied health professionals, teachers, parents………………………

• Consensus on the best practice/ desirable outcomes

• Integration of skills into daily living and activities

• Joint effort and collaboration by multi-sectors, different bureau

• Acceptance and true integration into society

Thank You