1. Understanding autism as a spectrum: Research using the DISCO Susan Leekam Wales Autism Research Centre School of Psychology Cardiff University www. walesautismresearchcentre.com

2. Understanding autism as a spectrum Outline 1. Concepts and background 2. What is the Diagnostic Interview for Social and Communication Disorders (DISCO)? 3. Research findings and research directions

3. Theoretical Framework Wing & Gould’s (1979) original theoretical proposal Autism is  a triad of impairments  a spectrum condition Concepts developed independently of DSM/ICD DSM and ICD classification systems are based on categories of disorder

4. Impaired social interaction Impaired communication Impaired imagination - narrow, repetitive pattern of activities A triad of Impairments Wing & Gould, 1979

5. Four decades 1970s “Triad of impairments” ( Wing & Gould, 1979) HBS (Wing & Gould (1978-1979) 1980s Asperger’s syndrome: A clinical account (Wing,1981) Autism continuum (Wing 1988) ADI (Le Couteur et al 1989) ; ADOS (Lord et al. 1989) 1990s Lorna Wing Centre opened (1991) Our Australian-UK research with pre-DISCO checklist ICD-10 (1992); DSMI-IV; ADI-R (1994) Our research on DISCO-9 Wing (1996) “The Autistic Spectrum” 2000s DISCO-9 ( Wing et al. 2002; Leekam at al, 2002) DISCO-10 and DISCO-11 (Nygren, 2009; Maljaars, 2011) Clinical training (14 countries, 3 translations) Research continues using the DISCO)

6. 2010s: Future directions Measuring Autism Spectrum Disorder  ASD is now a widely accepted term  Category-based measures such as ADI-R and ADOS not specifically designed to measure a spectrum concept  But the DISCO does measure the triad and the spectrum

7. Purpose of the DISCO Purpose is to assist clinician in 1. Clinical description - developmental history, current clinical picture 2. Diagnosis -using international classifications systems 3. Recommendation - concerning education, support and management of behaviours

8. Lorna Wing & Judith Gould Overview Semi-structured clinician interview Suitable for any age Covers whole spectrum Items relevant to related conditions Covers all aspects of clinical picture Developmental items Behaviour – past and present Clinical judgement section Information relevant for education,management and treatment

9. Lorna Wing & Judith Gould Developmental Skill Sections 1. Gross Motor Skills 2. Self Care 3. Domestic Skills 4. Independence 5. Communication – verbal / non-verbal 6. Social Interaction – adults / peers 7. Social Play / Leisure 8. Imagination 9. Pictures / Reading / Writing 10. Visuo-manual Skills 11. Cognitive Skills

10. For All Developmental Skills ACurrent level BDelay in acquiring relevant skills CAtypical behaviour associated with the relevant skills

11. Other sections Infancy Repetitive stereotyped and sensory activities  Stereotypies  Routines/ change  Sensory  Overall Pattern of activities

12. Other sections continued Emotions Maladaptive behaviour Sleep Psychiatric disorders  Catatonic features  Psychiatric conditions  Forensic problems Interviewer’s judgement  Quality of social interaction, communication, pattern of activities

13. DISCO and diagnostic algorithms Use of the DISCO is not directed by specific diagnostic categories (e.g. ICD-10) or algorithm cut-offs Its main aim is to identify patterns and profiles of individual behaviours But the DISCO has algorithms for diagnosis  ICD 10 and DSM IV (Autism, Atypical, AS)  Early Infantile Autism (Kanner & Eisenberg, 1956)  Asperger’s Syndrome (Gillberg, et al., 2001)  Autism Spectrum Disorder (Wing & Gould, 1979)  Social Impairment (Wing and Gould, 1979)

14. Research findings and research directions

15. Purpose of the DISCO and Research 1. Clinical description 2. Diagnosis 3. Recommendations Research Pattern of symptoms Design and testing of algorithms Service needs in relation to severity of ASD symptoms

16. Identifying patterns of symptoms  1990s: Categories and distinctive markers  2000s: Associated and overlapping symptoms within and beyond ASD

17. Summary of research evidence in 1990s distinctive markers/symptoms Problem with ICD-10 Asperger’s syndrome Empirical groupings show lack of specific cognitive marker for symptom patterns Conclusion that Patterns of language and non-verbal ability (developmental level) provide the best way of distinguishing symptom profiles Differences in symptoms best seen as a difference in degree of impairment (not distinctive differences) Published in Autism, 2000 and Journal of Child Psychol and Psychiatry, 1998

18. Our current research Current work uses DISCO items to focus on continuity and association of symptoms rather than on distinctiveness or specificity Examples of ongoing research using the DISCO  Associated symptoms  Associated conditions  Outcome in adulthood

19. Impaired social interaction Impaired communication Impaired imagination - narrow, repetitive pattern of activities sensory responses motor features poor daily living skills atypical emotion Associated symptoms Leekam, Nieto, Libby, Wing, & Gould, (2007). J Aut and Dev Disorders Rachel Kent (2011) PhD in 90% cases in 84% in 86% in 85%

20. New research: Associated sensory symptoms Differential links with core triad symptoms  Sensory symptoms (All)  Daily living skills (SI, RB)  Emotion (SI) Rachel Kent (2011) PhD

21. Overlapping behaviours across neurodevelopmental conditions ASD found in 58% Rett Disorder and 54% Cornelia de Lange group Individuals with Williams syndrome have distinctive ASD features in social interaction domain (quality of eye contact) Children with ASD+ epilepsy have more motor difficulties, developmental delays and challenging behaviours than ASD-epilepsy. Wuffaert, J Int Dis Res (2009), Leekam et al, in prep, Turk et. al. (2008) Acta Paediatrica,

22. Outcome in adulthood Billstedt et al (2007). Long term outcome in symptom profiles of children diagnosed with autism 13-22 years later.  Psychosocial outcome poor (2/3 non- independent)  Found social interaction difficulties and sensory symptoms persisted. Other symptoms had more variable outcome.  Communicative speech before 5, higher IQ predicted better outcomes Billesdt et al. (2007) JCPP, 48,11

23. Purpose of the DISCO and Research 1. Clinical description 2. Diagnosis 3. Recommendations Research Pattern of symptoms Design and testing of algorithms Service needs in relation to severity of ASD symptoms

24. Design and testing of of diagnostic algorithms Establishing the reliability and validity of DISCO informed diagnosis

25. DISCO: diagnosis items are reliable and valid Wing et al (2002). Good-excellent inter-rater reliability 80% items + Leekam et al (2002). Good-excellent discrimination for W&G ASD algorithm and ICD- 10 algorithm. Nygren et al (2009) Good-excellent inter-rater reliability 90% items. Excellent agreement with ADI-R and with clinician diagnosis using ICD-10 criteria. Maljaars et al (2011). High sensitivity and specificity of ICD-10 algorithm. Strong agreement with ADOS.

26. New research* Designing algorithms for a ‘family’ of DISCOs for use in:  identification  Triggers for referral  assessment  Abbreviated version  Full version For implementation in WG Strategic Action Plan – training of adult clinical network *Research by Sarah Carrington and Rachel Kent, WARC

27. Purpose of the DISCO and Research 1. Clinical description 2. Diagnosis 3. Recommendations Research Pattern of symptoms Design and testing of algorithms Service needs in relation to severity of ASD symptoms

28. Summary: DISCO research and services DISCO research in Canada on functional needs of adolescents has led to DISCO assessment contributing to transition and support plans in a lifespan consultation clinic. DISCO research in Wales is developing abbreviated forms of the DISCO that can be used for widespread identification and assessment within adult services. Links to work in children’s services? Relation between service needs and ASD symptoms?

29. Join us for some Diagnosis-Talk on Awares-Talk The Wales Autism Research Centre in collaboration with the charity Autism Cymru has set up a forum web space for conversations between practitioners and researchers across the UK and beyond. http://awares.org/talk/ Diagnosis-Talk opens on 23 rd March. Please onto the site and introduce yourself! www. walesautismresearchcentre.com

30. Key References Wing, L., Leekam, S., Libby, S., Gould, J. & Larcombe, M. (2002) Diagnostic Interview for Social and Communication Disorders: Background, Inter-rater Reliability and Clinical Use. Journal of Child Psychology and Psychiatry, 43, 307-325 Leekam, S., Libby, S., Wing, L., Gould, J. & Taylor, C. (2002) Diagnostic Interview for Social and Communication Disorders: Algorithms for ICD-10 Childhood Autism and Wing and Gould Autistic Spectrum Disorder. Journal of Child Psychology and Psychiatry, 43, 327-342. Leekam, S.R., Nieto, C. Libby, S., Wing, L., & Gould, J. (2007). Describing the sensory abnormalities of individuals with autism. Journal of Autism and Developmental Disorders. 37, 5, 894-910 Maljaars, J., Noens, I, Scholte, E. & Berckelaur-Onnes, I. (2011). Evaluation of the criterion and convergent validity of the Diagnostic Interview for Social and Communication Disorders in young and low-functioning children. Autism: International Journal of Research and Practice. Online June 2011. Nygren, G., Hagberg, B., Billstedt, E., Skoglund, A., Gillberg, C., & Johannson, M.(2009). The Swedish version of the Diagnostic Interview for Social and Communication Disorders (DISCO-10) Psychometric properties. Journal of Autism Dev Disord. 2009 May;39(5):730-4..