understanding autism as a spectrum: research using the disco susan leekam wales autism research...
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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)
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..
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