Understanding autism as a spectrum: Research using the DISCO

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 • Concepts and background • What is the Diagnostic Interview for Social and Communication Disorders (DISCO)? • 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. A triad of Impairments Impaired social interaction Impaired communication Impaired imagination - narrow, repetitive pattern of activities Wing & Gould, 1979

5. Four decades

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. 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 Lorna Wing & Judith Gould

9. Developmental Skill Sections • Gross Motor Skills • Self Care • Domestic Skills • Independence • Communication – verbal / non-verbal • Social Interaction – adults / peers • Social Play / Leisure • Imagination • Pictures / Reading / Writing • Visuo-manual Skills • Cognitive Skills Lorna Wing & Judith Gould

10. For All Developmental Skills A Current level B Delay in acquiring relevant skills C Atypical 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 1990sdistinctive 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. Associated symptoms Impaired social interaction Impaired imagination - narrow, repetitive pattern of activities Impaired communication • sensory responses • motor features • poor daily living skills • atypical emotion in 90% cases in 84% in 86% in 85% Leekam, Nieto, Libby, Wing, & Gould, (2007). J Aut and Dev Disorders Rachel Kent (2011) PhD

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 23rd 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..