Understanding autism as a spectrum:

Research using the DISCOSusan Leekam

Wales Autism Research Centre

School of Psychology

Cardiff University

www. walesautismresearchcentre.com

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

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

Impaired social

interaction

Impairedcommunication

Impaired imagination - narrow, repetitive pattern of activities

A triad of Impairments

Wing & Gould, 1979

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)

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

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

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

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

For All Developmental Skills

A Current level

B Delay in acquiring relevant skills

C Atypical behaviour associated with the relevant skills

Other sections

Infancy Repetitive stereotyped and sensory

activities Stereotypies Routines/ change Sensory Overall Pattern of activities

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

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)

Research findings and research directions

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

Identifying patterns of symptoms

1990s: Categories and distinctive markers 2000s: Associated and overlapping symptoms

within and beyond ASD

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

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

Impaired social interaction

Impairedcommunication

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 DisordersRachel Kent (2011) PhD

in 90% casesin 84%in 86%in 85%

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

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,

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

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

Design and testing of of diagnostic algorithms

Establishing the reliability and validity of

DISCO informed diagnosis

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.

New research*

Designing algorithms for a ‘family’ of DISCOsfor 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

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

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?

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

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..