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Service Use and Needs Among Those with an ASD in Adolescence and Young Adulthood

Friday, 3 May 2013: 14:30
Meeting Room 3 (Kursaal Centre)
H. L. Hayward1, T. Cadman1, N. Gillan2, H. Eklund1, D. M. Howley1, J. L. Findon1, H. Clarke1, J. Zinkstok3, G. M. McAlonan1, J. Beecham4, K. Xenitidis5, E. Simonoff6, D. G. Murphy7, P. Asherson8 and K. F. Glaser9, (1)Department of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, King's College London, London, United Kingdom, (2)Department of Forensic and Neurodevelopmental Sciences, King's College London, Institute of Psychiatry, London, United Kingdom, (3)Bethlem Royal Hospital, Beckenham, Kent, United Kingdom, (4)Personal Social Services Research Unit, London School of Economics and Political Science, London, United Kingdom, (5)Adult ADHD Service, Maudsley Hospital, London, United Kingdom, (6)Child & Adolescent Psychiatry, Institute of Psychiatry, King's College London, London, United Kingdom, (7)Forensic and Neurodevelopmental Sciences Department, Institute of Psychiatry. King's College London, London, United Kingdom, (8)Institute of Psychiatry, King's College London, London, United Kingdom, (9)King's College London, London, United Kingdom
Background:  While many studies have investigated service use and needs of children with developmental disorders (e.g. ASD) to date little is known about this issue for these groups as they reach adolescence and young adulthood.  Also, the lack of adult services for those with ongoing needs and functional impairments (in particular among those with high functioning autism, HFA) mean that family members become integral to the care of these clinical groups.  Hence, research into the needs of young adults with an ASD (and their carers) is important in order to design and implement appropriate and effective care programmes.

Objectives:  To investigate needs and other correlates of service use (e.g. medical and demographic) among those diagnosed with ASD in adolescence and young adulthood.

Methods:  An observational study with young people aged 14 to 24 with an ASD (diagnosed using the ADI-R) (n=87) and with their parents or partners (usually mothers) (n=101).  Face-to-face interviews and questionnaires were used to assess needs, as well as demographic and health factors associated with service use (e,g. psychiatric symptoms and medication use) at adolescence and young adulthood.

Results:  All young people met diagnostic threshold for an ASD; yet 44% were not receiving any kind of services.  Among our generally HFA sample there was a high level of psychiatric comorbidity but few were formally diagnosed or were seeing psychiatric services.  For example, close to half of our sample met DAWBA criteria for attention deficit hyperactivity disorder (ADHD) but only 1 in 3 reported the diagnosis.  Parents reported an average of 10 total needs with the most frequently reported needs concerning exploitation risk (reported by 83% of participants), ability to get and prepare enough food (73%), money budgeting (72%), looking after the home (63%) and social relationships (63%). Moreover, all reported needs were largely met by families rather than services.  In the multivariate analysis, meeting DAWBA criteria for a comorbid psychiatric condition (e.g. ADHD, GAD) was the only predictor of service use even when other factors such as age and socio-economic status were taken into account. However, parental education and young person’s autism symptoms were significantly associated with medication use.

Conclusions:  Despite a high prevalence of psychiatric comorbidities and needs 44 % of this HFA sample was not being helped by services.  The only significant correlate of service use among this clinical group was the presence of a psychiatric comorbid condition (even when core ASD symptoms and other medical and demographic factors were taken into account). In addition, 18% of our sample reported using either ADHD or Anti-Depressant medication providing evidence for the pharmacological treatment of the comorbid difficulties rather than the core symptoms of ASD.  Our findings suggest that lifetime autism-specific services are required to meet the complex needs of people with ASD.

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