1. National Conference 2012 Education and Learning Directorate Annual Conference 2012 for Educational Psychologists in Scotland The contribution of educational psychologists to multi-agency assessment and diagnosis of autism: a national perspective Shirley Paterson & Carolyn Brown

2. National Conference 2012 Education and Learning Directorate Session Outline Current national context Update re ASD diagnostic criteria National data research National research:key themes & outcomes Development of Autism Identification & Intervention Framework for EPS (NAIIF)

3. National Conference 2012 Education and Learning Directorate UK context/national guidelines re diagnosis NICE Guidelines (2011) SIGN Guidelines (2007) Scottish National Autism Strategy (2011)

4. National Conference 2012 Education and Learning Directorate National Autism Strategy ASD Diagnosis: recommendations Rec 19 diagnosis – guidelines for adults Rec 21 national waiting lists overview Rec 22 initiatives to address training issues re diagnosis Rec 23 comparing diagnostic processes between adults & children Rec 24 national directory of ASD diagnostic teams Rec 25 update of quality diagnostic standard

5. National Conference 2012 Education and Learning Directorate ASD diagnosis & ASD National Reference Group Oversees 6 Sub-groups: Achieving best value Cross agency collaboration Diagnosis, intervention & support Employability etc Research Users/carers

6. National Conference 2012 Education and Learning Directorate National Autism Strategy Ten indicators for best practice A multi-agency care pathway for assessment, diagnosis & intervention to improve the support for people with ASD & remove barriers Services that can demonstrate that service delivery is multi-agency in focus & coordinated effectively to target meeting the needs of people with ASD.

7. National Conference 2012 Education and Learning Directorate Changing Diagnostic Framework –Revision of DSM Diagnostic categories DSM-IV Autism Asperger’s Syndrome Pervasive developmental disorder not otherwise specified (PDP-NOS) Proposed DSM-V Autistic spectrum disorder

8. National Conference 2012 Education and Learning Directorate A single diagnostic category – why? Differentiating autism disorders has been found to be inconsistent and variable over time and contexts and often associated more with severity, language level or cognitive ability rather than features of the autism disorder.

9. National Conference 2012 Education and Learning Directorate Diagnostic domains DSM-IV Qualitative impairment in social interaction (at least 2/4) Qualitative impairments in communication (at least 1/4) Restricted repetitive and stereotyped patterns of behaviour, interests and activities (at least 1/4) Delays in at least 1 domain pre-3 Proposed DSM-V Persistent deficits in social communication and social interaction across contexts (3/3) Restricted, repetitive patterns of behaviour, interests or activities (2/4, including hyper/hypo sensory reactivity) Symptoms present in early childhood Symptoms together limit and impair everyday functioning

10. National Conference 2012 Education and Learning Directorate Three diagnostic domains to two – why? Deficits in social communication and social behaviour seen as inseparable Delays in language not unique to or universal in ASD – more something that influences the presentation of symptoms rather that defines diagnosis More demanding thresholds within 2 domains increases clarity and specificity without reducing sensitivity

11. National Conference 2012 Education and Learning Directorate Proposed revision adds dimension of severity Level 1 – ‘requiring support’ Level 2 – ‘requiring substantial support’ Level 3 – ‘requiring very substantial support’

12. National Conference 2012 Education and Learning Directorate Potential issues Will impact on clinical practice Concerns that diagnostic populations will not match Loss of Asperger’s Syndrome as diagnostic label – impact on existing population Assessing severity

13. National Conference 2012 Education and Learning Directorate Examples of EP involvement South Lanarkshire Health-led central waiting list for diagnosis/identification Assessment process – key health practitioners involved Eps contacted for contribution when child/yp’s name reaches top of waiting list Eps have been asked to be part of a re- design

14. National Conference 2012 Education and Learning Directorate Examples of EP involvement Fife Context WASP (West Fife autism spectrum pilot) – schools/eps Establishment of diagnostic care pathways GIRFEC/GIRIF Education ASD Strategy ASCA (autism spectrum community assessment)

15. National Conference 2012 Education and Learning Directorate Pre-Pathway Services Post code lottery of service provision Cases passing from one service to another Lack of communication between services Conflicting opinions/ advice Lengthy waiting times (3 years) Parental confusion/frustration

16. National Conference 2012 Education and Learning Directorate 3 Stage Pathway Stage 1 Recognition of Difficulties –Primary Care Staff-> 2 services, refer on to Stage 2 (ASCA) Community Based Assessment –Multi-agency/ disciplinary professionals refer on to Stage 3 (FAST) Specific Assessment –Specialist multi-agency/disciplinary Team with specific experience/training.

17. National Conference 2012 Education and Learning Directorate FCPS EP Evaluation (Barry Howard, Nicola Jamieson) Strengths of ASCA Multi-agency working: encourages professional understanding & capacity building in schools Holistic view of the child: detailed, multi- agency contextual assessment across school and home Reduced timescales for diagnosis Informed interventions: contextual assessment helps to link assessment to intervention & school planning

18. National Conference 2012 Education and Learning Directorate Implications for practice Joint/shared assessment pathway process EP Reports Waiting times now approx 6 months (but… Workload for EPs Manual updated/streamlining of process Challenge to professional boundaries – shared skills & knowledge – language of compromises Capacity building in schools & across services

19. National Conference 2012 Education and Learning Directorate Formal Diagnosis/Identification in Fife collated via school returns 200520062012 Diagnosed507472433 Identified156217204 In ASCA Process 00128 Totals663689831

20. National Conference 2012 Education and Learning Directorate National Research: autism diagnosis and educational psychologists’ involvement What we did Questionnaire to Principals of all Scottish local authority psychological services 97% return rate (30/31 services) Follow up interviews with 6 psychological services (8 in total)

21. National Conference 2012 Education and Learning Directorate 1.Is there a specific service and established pathway for autism diagnosis in your authority? Yes 90% 2. Is there a centralised waiting list for diagnosis? Yes 65%

22. National Conference 2012 Education and Learning Directorate 3. Does your service contribute regularly to diagnostic assessments of autism? - where case is already known to the service YES 87% - in all cases Yes 35% Where there’s not an obvious pathway cases are missed by EPs

23. National Conference 2012 Education and Learning Directorate 4.Capacity issues aside, should psychological services be involved in the diagnostic assessment process? - where case is already known Yes 100% - in all cases Yes 35%

24. National Conference 2012 Education and Learning Directorate 5. 100% psychological services agreed that best practice for diagnostic assessment of autism via a multi-agency process in keeping with GIRFEC principles

25. National Conference 2012 Education and Learning Directorate 6.Capacity/workload issues for your service regarding the involvement of eps in autism diagnostic assessment? Yes 68% - All eps - Specialist eps - Time allocations - Anticipated demand

26. National Conference 2012 Education and Learning Directorate 7.Additional or specific training for EPs to be involved in autism assessment/diagnosis? Yes 62% No 38% -Joint training re process/procedures – capacity building -Autism specific eg ADOS etc

27. National Conference 2012 Education and Learning Directorate 8. Is there an Autism Strategy Steering Group in operation in your authority? Yes 65% 9. Where a ASD Strategy Group was in operation Psychological Services were represented? 100 %

28. National Conference 2012 Education and Learning Directorate 10. Best practice for the involvement of psychological services in an autism diagnostic assessment process- key themes Contextual assessment & ep perspective Shared information for planning & intervention Development of joint pathways Diagnosis/identification on the basis of observed behaviours Capacity building across universal services

29. National Conference 2012 Education and Learning Directorate Conclusions/points to consider Diagnosis, identification, assessment - semantics or pragmatics? Diagnostic pathways – where do EPs feed in organisationally and around individual children/YP? Specific role of the EP – both in assessment information and post diagnosis?

30. National Conference 2012 Education and Learning Directorate Conclusions (cont) Skills of EPs – core and specialist? Roles within a Psychological Service? Capacity/workload issues for EPs Training & building capacity - use of specific diagnostic tools. Multi-agency training? ‘Ownership’ of the diagnosis, reports and feeding back Profile of educational psychologists?

31. National Conference 2012 Education and Learning Directorate Developing a National Autism Identification & Intervention Framework for EPs (NAIIF) Workshop Task (see handout for details) NAIIF Key Headings: Best practice principles Multi agency pathway involvement EP contribution to identification & intervention EP contribution to LA strategic developments