DSM-V & its Implications for Schools & Families

1. DSM-V & its Implications for Schools & Families Prof Rita Jordan PhD OBE Emeritus Professor in Autism Studies University of Birmingham, UK Autism New Zealand Conference. Workshop Auckland, September 2012

2. Current Diagnosis • ICD:10 & DSM:IV - based on underlying ‘triad’ of difficulties: • social & emotional understanding • communication • flexibility in thinking & behaviour • ASD part of PDD • autistic disorder (classical autism) • Asperger syndrome • atypical autism/ PDD-NOS • DSM-V & ICD-11 coming (2012)

3. DSM-V & ICD-11 • PDD • all to be ASD • PDD-NOS gone • Retts syndrome & Heller’s syndrome (CDD) medical • ASD • subcategories gone (i.e. no Asperger syndrome, no PDD-NOS) • 2 dimensions not triad (social & communication combined) • both dimensions compulsory for ASD diagnosis

4. Dimensions • move towards dimensions r.th. categories • descriptors of place on each dimension as part of diagnosis • better relates to ‘needs led’ services • ‘cut-off’ makes dimensions -> categories • dimensional diagnostic tool: DISCO (status of ADI & ADOS?)

5. Sensory Issues • evidence that at extremes -DSM-V will record • both over- and under-responsive to different senses • ‘over-responsive’: sensory avoiding; ‘under-responsive’: sensory seeking • shield from sensitivities and/or desensitise • attach meaning to perception - reduce ‘bombardment’ of meaningless stimulation • aware of variability - use proximal blocks • give environmental control to individual if possible • reduce overall stress • teach to monitor and manage levels of arousal

6. Co-Morbidities Wing: “Nature never draws a line without smudging it” • ASD rarely occurs as sole disorder • additional developmental disorders & later anxiety disorders • current diagnostic hierarchy rules deny reality: • language disorder & autism • ADHD & ASD • expression of disorders affected by comorbid conditions

7. Problems in Current Systems • sub categories poor validity • social & communicative linked • inappropriate basis for services • poor guide to prognosis and treatment • boundary between PDD-NOS & ‘typical’ too vague and inconsistent • AS assumed to mean ‘mild autism’ but muddled with IQ • separate dimensions of autism severity & intelligence

8. Status of Diagnosis • ASD may be ‘family of dimensional phenotypes’ including: • symptoms (diagnostically differentiating) • level of functioning • psychiatric and medical co-morbidities • NICE (2011) : ‘autism’ not just a medical diagnosis but a social/care responsibility’ • Szatmari (2011) ASD - great heterogeneity of: • phenotypes • outcomes • risk factors

9. Reasons for Diagnosis • to provide outcome status for research on causal pathways • to develop and evaluate treatment • to enable identity & support /training for individuals, families and professionals • to create cohesion and order among ‘symptoms’ • should not be for ‘rationing’ of services- should be ‘needs-led’

10. Problems with DSM-V • Mandy et al (2011) what will happen to PDD-NOS individuals? • only 2/66 children with PDD-NOS would score as having ASD in DSM-V • join ‘social & communication difficulties’ diagnosis but this is behaviour-based • only interim stage until valid sub-groups

11. Problems with DSM-V (2) • Partland et al (2012) - re ‘diagnosed’ data from DSM-IV under DSM-V • specificity good but sensitivity for AS & PDD-NOS poor i.e. many of more able ‘missed’ • ignores language level within diagnosis yet research shows major outcome variable • if language is ‘outside’ diagnosis why is RSB in?

12. Personal Reactions? • link with identity (usually AS) • “ASD of the Asperger type” • social reactions need to be anticipated and planned for • adjustment period • regular services not prepared • specialist services too limited & segregated • individualisation not adequately trained • break with categorical/ medical model • ASC vs ASD?

13. Services post DSM-V • fulfill all advice for ‘needs-led’ services • helps move towards integrated services • reinforces responsibility of all • ‘special’ is understanding and approach - not location • research shows best model is skilling of ‘typical’ services • fits recognition of prognosis depending on services, not just diagnosis • better ‘fit’ for individual at appropriate level

14. Individualisation • move beyond rhetoric & ‘lip-service’ • recognise individual differences important for education & treatment • sociability • language disorder • sensory responsiveness • intelligence • impulsivity (ADHD)

15. EBP vs EST • Evidence Supported Treatment • existing treatment • evaluation of treatment • Evidence Based Practice • starts with individual • evaluates what is best for individual • takes account of EST & process • EBP supported by more individualised diagnosis

16. ASD as a Social Instinct Deficit • Sigman et al (2004) qualitative social difficulties most universal & specific dimension of ASD • not TOM but need for TOM • early aspects of social salience, joint attention, communication gestures etc • sociability as individual not diagnostic factor • supported by neurophysiology & imaging as well as by treatment outcomes

17. Teaching about Emotions • self then others • explicit meaning through: • mirrors - attention to own • unambiguous emotional expressions • explicit labeling - external cues? • context • managing extreme emotional reactions • enjoyable experiences enhance learning

18. Evidence • no single approach • evidence for: • structure • broad modern behavioural methods • training parents in social interaction & communication techniques • play-based early interventions (15 hrs/ week) • in all studies some do well and some do not • in all studies children tend to learn only what are explicitly taught

19. Reasons for challenging behaviour in ASD • biology • epilepsy • perception/ sensory disturbance • sensory ‘deprivation’ • reactions to pain • lack of communication skills • lack of self-awareness • adaptation to the environment

20. Background Factors • Diet • peptide theory • effects of diets • Sleep • chronic deprivation • melatonin • Exercise • daily aerobic

21. Severe Types of Anxiety Disorders • phobias • panic attacks • obsessive compulsive disorder • post traumatic stress syndrome • personality disorder

22. General Approach • reduce stress by: • use of prosthetic devices • increasing understanding • improving coping skills • accept nature of the autistic difficulties i.e. take perspective of person with ASD • priority to communication &interpersonal development

23. A Positive Approach • move away from aversives • understand meaning and function • need positive alternative • not inhibition • teaching consequences • structured setting • accept phobias etc..

24. Practical issues • reflection • allow time • include emotional context • make pragmatically relevant • real and informed choices • menus • flow charts for challenging behaviour • positive experience of alternatives

25. Practical issues (cont) • opportunities for control of others/ events • with feedback • external cueing of emotional states • notice signs • teach to person with ASD • make relevant - i.e. lead to action

26. Changing Behaviour • difficult to inhibit actions • change the environment • prevent the response & train alternative • develop self control (supports) • functional analysis • teach adaptive behaviours • plan - do - reflect

27. Functional Analysis -autism specific • Settings • ‘last straw’ not always ‘trigger’ • whole child (inc. skills) & whole school approach • parent collaboration • Behaviour • accurate • frequency • duration • intensity • Results

28. Making it worse • transactional nature of autism • frustration & deskilling of carers • literal reading of behaviour • fear • short-term success • ‘punishment’ may be a reward • predictability is paramount

29. Potential Dangers • whole notion of diagnosis may be lost in needs led services • without autism awareness behaviour may be misunderstood • specialisd input may be delayed until child has ‘learnt to fail’ • autism gives new meaning to behaviour and new urgency in developing appropriate interventions

30. Starting Off • best to act ‘as if’ the child has autism • successful preemption of anxiety may prevent co-morbidities • remediating behavioural abnormalities/ differences may still leave the child vulnerable • need to understand resilience, from longitudinal studies - need diagnosis to enable this • need to work on understanding first, then give positive natural experiences in which learning is facilitated

31. Early Social/ emotional engagement • more able to engage socially if structured through enjoyable activity • mutually enjoyable activity increases: • social skills & understanding • communicative ability • flexibility • difference between lack of understanding and non-compliance • need for parents and professionals to understand the condition from the start • more able (with language) more misunderstood -fewer diagnosed?

32. Conclusion • some logical changes but not allowed for social/ personal reactions • opportunity to re-focus on needs and individual differences • chance to integrate diagnosis with assessment leading to individualised services • ASC vs ASD to ‘deal with’ expansion of numbers • cognitive style vs disability