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.