Translating diverse research into useful practice Richard Mills The National Autistic Society

1. Translating diverse research into useful practice Richard Mills The National Autistic Society

2. Making sense of researchissues in the evaluation of interventions in autism

3. Autistic spectrum • Diverse behaviours, heterogeneous population • Differ in aetiology and outcome. • Changing rates of prevalence

4. Interventions • Conflicting theory and reports of efficacy • Exaggerated or false claims • Fads and fashions • Little reliable independent evaluation

5. Background ….influence of ideas…. ….key events

6. 1940’s Kanner • acknowledged “innate”, biological factors • noted upper class bias Asperger • described “affective disturbance at biological level” “constitutional causes, genetic transmission”

7. Little differentiation 1950’s van Krevelen , Cameron • Biologicalcause • Variant of childhood schizophrenia • Interventions based on those for schizophrenia

8. 1960’s In UK • Disability services led by health - most provision in institutions • Children excluded from state education - First Autism school Creak • Diagnostic framework “the 9 points” • “Schizophrenic syndrome in childhood” Bettleheim • “Psychogenic” - “refrigerator” parent. • Advocated “Parentectomy”

9. 1960’s Rimland • “Neural” causes – biomedical approaches Schopler • Debunks Bettleheim • Advocates structured, environmental and individualised approaches Lovaas • “Behavioural syndrome” • Operant approaches Kolvin • Differentiates autism and childhood psychosis

10. 1970’s In UK “mentally handicapped” children become eligible for education First specialist autism services for adults Rutter and Folstein • Genetic influences • advocates cognitive strategies Lovaas • Young Autism Project at UCLA Schopler and Mesibov • Linking research and practice - Division TEACCH

11. 1970’s Bartak and Rutter • Structured teaching – evaluation showed more effective than psychotherapeutic and permissive approaches Wing and Gould • Epidemiological study – Autism as a “continuum”

12. 1980’s In UK - Closure of long stay institutions and growth of Community services – the need for new technologies Emerson, McGill et al • Concern about anti psychotic medications • Behavioural interventions in community settings Wing • The closure of Darenth Park Lavigne et al, Durand, Carr, et al • Communication based interventions Mesibov • TEACCH introduced into UK

13. 1980’s DSM III • Classification - “pervasive developmental disorder” Wing • Broadening of the concept - Term Asperger syndrome introduced Leslie, Frith, Baron Cohen • Introduction of cognitive models Reicheld • Biological explanations - dietary interventions Courchesne • Specific brain lesions and functions implicated

14. 1990’s Explosion in awareness Growth and re emergence of various therapies More focus on “more able” individuals Gillberg • Identification of specific organic and co occurring conditions • Revision of prevalence rates Frith, Baron Cohen et al Jordan et al , Ozannof et al, Hadwin et al • Development of cognitive theories and approaches • practical application in education and treatment • No effect on core deficits

15. 1990’s Frith, Baron Cohen et al, Dewey, Jordan et al , Ozannof et al, Hadwin et al • Development of cognitive theories and approaches • Recognition of specific autism thinking styles and effects on behaviour and learning • Practical application in education and social intervention • No effect on core deficits Jordan and Jones • Difficulties of accurate evaluation highlighted

16. Understanding autism Where are we now?

17. Consensus a spectrum of biological / developmental conditions • public concern - MMR! • “Cause and cure” • No agreement on causes or treatment • Key areas under researched

18. Few individuals have well-defined “disease entity” • Diagnostic confusion/lack of clarity • Complex brain differences and genetic factors • Unknown environmental factors • Ethical and political issues – “different not disordered” Continued broadening and refining of diagnostic criteria Rhetoric led policy – not tested – e.g inclusion

19. Helpful interventions – Where are we now ?

20. Howlin [2003] • Little known about long term effects • Variable presentations and responses • Promising approaches based on structure behavioural and cognitive interventions • Personal accounts of autism e.g • Grandin, Williams, Kaufman, Lawson, Tito etc • Martin et all [1999], APANA [2002] • Concerns about use of drugs

21. MRC [2003] “Valuing People” [2001] • Call for “evidence – based” practice • Charman and Clare [2004] • “Mapping Autism Research” • Significant weaknesses in research of interventions • NAS • Biomedical interventions a priority of parents • Need for more sensitive instruments for evaluation • Key importance of knowledgeable professionals to outcomes

22. Current position on research?

23. global research activity from ISI * – topic areas * Institute for Scientific Information Charman and Clare 2004

24. global research activity from ISI – country of origin Charman and Clare 2004

25. comparison of UK vs. non-UK topic areas Charman and Clare 2004

26. Particular challenges for evaluating interventions in autism • Not specific about purpose • Fail to reflect complexity of condition • Reliability and validity of measures • Treatment fidelity • “Several interventions used at the same time

27. What do we mean by useful?

28. Priorities for intervention ? Parents and carers Person with autism Public agencies Professionals Government Whose?

29. comparison of current activity (ISI) vs. researcher priorities vs. parent priorities Charman and Clare 2004

30. priorities in causes + aetiology research: ISI vs. researcher priorities vs. parent priorities Charman and Clare 2004

31. priorities in intervention research: ISI vs. researcher priorities vs. parent priorities Charman and Clare 2004

32. “target” for intervention

33. “target” for intervention • Primary or Core features? • Specific cognitive or behavioural features? • Co occuring or secondary conditions? • Barriers to quality of life?

34. Evidence based practice ? Making it add up!

35. Specify Subject characteristics National Autistic SocietySimple model for evidence based practice Assessment / diagnosis Specify / describe intervention characteristics improved Short term Med term Long term Intervention hypothesis Intervention Evaluate outcomes no change worse • Specify • Targets • Inputs • methods • Describe • Proposed outcomes Review and record Decide what to measure and how to measure it Ack. Lenton [2002]

36. Approaches and interventions in autism Claims and evidence

37. Interventions claiming cure or recovery- few independent studies Include • Psychoanalysis • Specific biomedical • Doman Delacato • ARM • AIT • Holding Therapy • ABA [Lovaas] • Option [Son-Rise] • Dolphins

38. Interventions claiming symptomatic improvementpositive accounts but limited studies long term specific studies needed Include • Specific pharmacological e.g. Respiridone-SSRI’s • Specific biomedical – [e.g. diets-vitamins-supplements] • Teacch • Music therapy • Cognitive behaviour therapy • Sensory integration therapy • Floor time therapy • Irlen Lenses • Mediated learning • Specific language and communication approaches [e.g. Hanen-EarlyBird]

39. Interventions claiming recovery or significant symptomatic improvement- not supported Include • Facilitated Communication [FC] • Specific biomedical e.g. Secretin - Amino Acid therapy - Dimethylglycine [DMG] • Specific psychopharmacological e.g.Fenfluramine, Melleril

40. Interventions claiming symptomatic improvement- inconclusive evaluation- more studies indicated Include • Structured ecological and behavioural approaches e.g. TEACCH • Specific structured behavioural approaches e.g. Functional analysis • Communication based approaches e.g. PECS • Structured cognitive approaches e.g. Social Stories

41. Interventions claiming significant symptomatic improvement- supported by scientific evaluation Include • Structured teaching

42. Reflections on research

43. Charman and Clare 2004 • level of research activity in the UK is strong - but emphasis ? • parents and researchers agree that research into causes and interventions are a priority • but they disagree on specific priority areas • research into families and services largely overlooked • Little co ordination of research activity • Few approaches evaluated by proper trials

44. Summary Conclusions from research

45. Positive outcomes associated with :- • Systematic structured behavioural approaches- build on strengths • Focus on autism specific features and underlying cognitive and sensory issues – • The use of natural reinforcers / naturalistic settings. • Social effectiveness – contact with normal developing peers • Functional analysis and communication based interventions • Predictability and consistency • Modification of environmental setting • Engagement of parents / care givers Howlin [2000]

46. Note • No shortage of choice but little quality control - few independent studies support claims for “cure” or “recovery” • Intensive, early structured behavioural intervention associated with better outcomes • No one approach – combination of approaches may be needed • Variable responseto interventions - even with broadly similar individuals • Parents and individuals vulnerable to quackery

47. No “drug for autism” but some medications and biomedical interventions useful on a case-by-case basis • but concerns over long term use of drugs and vitamins • More information needed on diets and supplements – specific treatment of identified conditions – alleviating co occurring problems - improving overall health

48. Looking forward

49. Considerations for a strategy for research into practice • Understanding specific brain function and implications for intervention • Systematic diagnosis of autistic disorder, subgroups and co morbidities • Recognition that autism is complex- Sophisticated models for refining evaluation needed • Systematic description of intervention and conditions Evaluation to be embedded within models of good practice - not an afterthoughtDevelop user friendly systems for data collection and analysis Research to be collaborative and inclusive – shared agendas

50. Higher priority for research into interventions, families and services, including, • Practical measures to improve communication, quality of life and opportunity- reduction of challenging behaviour • Psycho educational [e.g. structured and cognitive behavioural approaches, ecological and sensory approaches] • Biomedical [e.g. specific diets- supplements and vitamins] • Psychopharmacological- uses and abuses of medication • New approaches - utilise new thinking e.g. EMB theory - set within scientific frameworks