Wales’ 4 th International Autism Conference, June 2011

1. An exploration of the current diagnostic processes used for the assessment of autism spectrum disorders in children in Gwent - professional and service user perspective Anne MarieMcKigney, Alka Ahuja and Lindsay Wright Wales’ 4th International Autism Conference, June 2011

2. Overview • Background of our research • Group exercise and feedback • Presentation of our results • Service user perspective • Feedback

3. Background • Autism spectrum disorders (ASD) pose challenges that are multi-faceted • Early assessment and intervention is paramount • The Welsh Autistic Spectrum Disorder Strategic Action Plan (2008)

4. Background • Need to identify current diagnostic pathways and practices for ASD in Gwent • Two staged study using quantitative and qualitative methods • Explore the views and practices of professionals and service users

5. Group Exercise • What is the current practice in your area? e.g. multidisciplinary, multiagency • What instruments/interviews if any do you use? • What are the strengths and weaknesses of your local diagnostic system?

6. Gwent study: Stage 1 • 51 stakeholders identified for screening interview • Snowballing method used • Sub group identified for the next stage of the study

7. Gwent study: Stage 2 • 23 qualitative semi-structured interviews: health and education • Transcripts analysed for categories and themes

8. Results: Stage 1 • Response rate: 61% • 80% reported current involvement in diagnostic process

9. Stage 1- Professionals

10. Stage 1- Involvement (hours/month)

11. Stage 1- Contribution

12. Stage 1- Assessment tools • 63% used standardised questionnaires

13. Stage 1 • 74.5% reported working with other professionals during the diagnostic process e.g. Portage, Education, NAS etc

14. Stage 1- Specialist Training

15. Stage 2- Themes • Time • Communication • Multidisciplinary teams • Diagnoses and formulations • Clinical judgement • Characterization/perceptions of ASD • Differential diagnosis • Need for single pathway • Post-diagnosis • Training

16. Time “It’s a long drawn out process….but on the other hand there are benefits of things taking a long time to unfold…if things happen too fast its difficult for families to take it in….”

17. “…what they can’t stand is the waiting times for each service….see paediatrician, then wait for SALT, then see me…it’s the waiting game they can’t stand…”

18. Communication “…the sharing of information between professionals is good….but its often paper based…a report doesn’t always give an accurate description of a child….to see the child and to read about the child are two different things…..”

19. Multidisciplinary teams “…MD approach is a great strength of the assessment process…” “It can be difficult for families to understand the complexity of multidisciplinary assessment…don’t see how it all links up…”

21. Diagnoses and Formulations “Children can end up with the same diagnosis, but actually have very different needs…” “The diagnosis is part of the intervention – not separate…”

22. Diagnoses and Formulations “The gold standard would be to focus on the needs of the child rather than diagnosis…”

23. Clinical judgement “Does a diagnosis help or hinder people? Best thing for some people, worst for others…” “I’ ve been pointing out how do I know that children I diagnose you would diagnose?”

24. Understanding/perceptions of ASD “There is no treatment, but changes expectations – child seen as autistic, not naughty”

26. Understanding/perceptions of ASD “…Not as stigmatised as learning disabilities, kind of ‘cool’...” “People are more likely to mention social and comm. disorder, but won’t initiate autism – but when I ask autism often they say yes”

27. Birmingham's Spaghetti Junction has been voted Britain's most intimidating road system

28. Multiple pathways “If we don’t know how it works how can we expect them to know how it works…” “One weakness is the unclear pathway…a gold standard would be for everybody to know exactly what the pathway is, even if it varies for different ages…just so we know…”

29. Post diagnosis “….every parent reacts differently…some parents feel finally they may get an ‘answer’ in a way….still, a mum said to me a while ago: you read it’s going to be a relief…what a load of rubbish…the problem is still there…no matter what the diagnosis, the child is still going to have difficulties…”

30. Service User Perspective • Four young people and their families undergoing an assessment were interviewed • Experiences, opinions and expectations about the current diagnostic process were explored

31. Service User Perspective • Qualitative, in depth interviews conducted • The analysis focussed on the families’ journey through the service • Digital stories

32. Good For Both of Us

33. Feedback • What is the current practice in your area? • Multidisciplinary • Multiagency • Single practitioner (private and NHS) • Gaps in service • Different pathways (preschool and school aged) • Not a single point of entry • CAMHS input erratic/lacking in some areas • Adult: different and separate

34. Feedback What instruments/interviews if any do you use? • ADOS • ASSQ • DISCO (brief version) • 3di • ADI • SCQ • DSM IV • CARS • CCC II (older) • SRS • GARS II • Informal observations • Formal SALT assessments • WAIS • MCHAT • 2 appointments

35. Feedback What are the strengths and weaknesses of your local diagnostic system? STRENGTHS • Panel of professionals • Sharing of information • Joint meetings • Some good practice but gaps • Some written pathways (especially for < 5 years) • Use of standardised measures

36. Feedback What are the strengths and weaknesses of your local diagnostic system? WEAKNESSES • Reliance on individuals rather than process (people leave/retire) • Inconsistent provision • Lack of awareness • Failure to recruit • Insufficient professionals trained • Lengthy process • Lack of information sharing (especially with schools) • Terminology vague and inconsistent • Long waiting times • CAMHS not involved in assessment • Lack of ASD specialists • Single practitioner • Long waiting lists • Lack of consistency • Early diagnosis not happening • Parents need to be assertive to get assessments done

37. Acknowledgements • Children and their families participating in the study • Our professional colleagues for their participation • ABHB Small Grant Scheme • Chief Medical Officer Grant Committee (Welsh Assembly)