Autism beyond childhood. The Challenges

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1 Autism beyond childhood The Challenges

2 Why ASD and Why Now? Prevalence Historically emphasis has been on childhood Adults fall through cracks Poor services Government responses

3 Pervasive Developmental Disorders Autism Atypical autism Asperger s syndrome PDD NOS Rett syndrome Disintegrative psychosis

4 Why Pervasive? Affect most aspects of individuals development and functioning Not all-pervasive

5 Qualitative Impairments in Reciprocal Social Interaction Failure to use non-verbal behaviours to regulate social interaction Failure to develop peer relationships Lack of shared enjoyment Lack of socio-emotional reciprocity

6 Qualitative Impairments in Communication Lack of, or delay in spoken language and failure to compensate through gesture Lack of varied spontaneous make-believe or social imitative play Relative failure to initiate or sustain conversational interchange Stereotyped, repetitive or idiosyncratic speech

7 Repetitive and Stereotyped Behaviours Encompassing preoccupation or circumscribed pattern of interest Compulsive adherence to non-functional routines or rituals Stereotyped and repetitive motor mannerisms Preoccupations with part objects or non-functional elements of materials

8 Associated Features 75% individuals with autism have MR 25-33% individuals with autism develop epilepsy Behavioural difficulties Problems with attention and overactivity Sensory oversensitivities

9 Co-morbid disorders Anxiety Depression OCD ADHD Eating disorders Psychosis Forensic

10 Who? Individuals with a diagnosis Individuals with an IQ below the normal range Individuals with no diagnosis Individuals with an IQ in the normal range Men and women

11 Chakrabati and Fombonne (2001) Disorder; rate/10000 Age of referral Percentage male Percentage normal IQ Autism 16.8 Asperger 8.4 PDDNOS months months

12 Mediating mechanisms Impaired social/communicative understanding Impaired social/communicative ability Impaired self control Impaired flexibility Anxiety Lack of goals Low self esteem

13 Developmental challenges Adolescence Higher education Work Independence Relationships Co-morbid disorders

14 Adolescence Brain maturation and change Physical growth Developmental transitions Enter period of risk for co-morbid disorders

15 Puberty Brain maturation and change Increase in production of sex hormones Physical growth Secondary sex characteristics

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17 Developmental transitions Education Peers Romantic relationships Expectation of increased autonomy and responsibility Higher education or work

18 What are our goals? Survive adolescence Promote adjustment

19 Education Identify strengths Establish an appropriately ambitious plan Minimise bullying Foster social networks Maintain self esteem

20 Obstacles Different attitude towards adults Development seen as a phenomena of childhood No life span approach Legislation largely focussed on childhood Lack of societal ambition

21 Higher Education Often had significant support from parents Organizational difficulties Forming new relationships Repetitive behaviours Limited self help skills

22 Work Lack of ambition Identifying strengths Obtaining a job Surviving the social aspects of work

23 Independent living Self care Travelling independently Budgeting Long term planning Establishing social networks New experiences

24 Relationships Siblings move away from home Parents become ill or die Friends go away Lack of job and transport Limited initiative Friendships centred around particular interests Romantic relationships can be hard to establish

25 Interests and behaviours Limit intrusive/repetitive behaviours Turn interests/strengths into life opportunities Self help skills Teach planning skills

26 Tactics

27 What are our goals? Highest possible quality of life Contribute to society

28 Needs Diagnosis Appropriate education Address handicaps Treat and prevent secondary handicaps Identification and recognition of strengths Work Increase daily living skills and independence Social networks Fostering of developmentally appropriate ambitions

29 Optimal management Not an acute illness model Individual and their family Optimising educational attainment Maximising social functioning Maximising independent living Optimal employment Ensuring social support

30 Key aspects of management A long term plan Anticipation Prevention Regular review

31 Acute management History What strategies are they using? Non-compliance? Environmental manipulation Medication Long term plan

32 Mediating mechanisms Impaired social/communicative understanding Impaired social/communicative ability Impaired self control Impaired flexibility Anxiety Lack of goals Low self esteem

33 What is the goal of our intervention? Develop/repair a normative mechanism? Strengthen alternative strategies?

34 Strategies Focussed education Environmental manipulation Behavioural approaches Anticipate transitions Life planning Employment Medication

35 Communication skills Speech Context Groups Social chat Electronic communication

36 Social skills Joint attention behaviours Turn taking One-to-one interactions with peers Interactions with groups Scripts/social stories Emotion recognition

37 Interests and behaviours Limit intrusive/repetitive behaviours Turn interests/strengths into life opportunities Self help skills Teach planning skills

38 Prevention of secondary handicap Anxiety Social isolation Depression

39 Education Recognition of needs Organization Mentoring Preventing social isolation and exploitation Maximising self-help skills Minimising repetitive behaviours Career guidance and support

40 Work Matched to strengths Analysis of task and social demands Can build up hours Support Review and feedback

41 Independent living Self help skills Travelling independently Budgeting Long term planning Establishing social networks New experiences

42 Self help skills Personal hygiene Cleaning, washing, shopping, cooking etc May need reminding Timetables

43 Travelling independently Start early Build up Practise Accompanied first Cell phone and GPS

44 Independent living Self help skills Travelling independently Budgeting Long term planning Establishing social networks New experiences

45 Implications Prepare for adult life Targeted life long education Prevention rather than cure Early intervention Regular reviews

46 Capacity building Diagnostic services Psychiatric support services Higher education disability services Job placement and coaching Independence training Independent housing Social networks

47 Moving forward Parent led Cohesion around areas of agreement Keep Government informed Let someone else take the credit