Service Use and Needs Among People with ASD During the Transitional Years From Adolescence to Young Adulthood

Background: Although 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 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 who are now at transition from child to adult services.

Methods: An observational study was conducted with young people (aged 14 to 24) with an ASD (n=85, diagnosed using the ADI) and with their parents or partners (usually mothers) (n=98). 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) and the transition from child to adult services.

 Results :. All young people met diagnostic threshold for an ASD and yet 44% were not receiving any kind of services. Participants reported an average of 9.4 total needs (an average of 3.2 of those were unmet needs) with the most frequently reported needs concerning exploitation risk (reported by 84% of participants), ability to get and prepare enough food (74%), money budgeting skills (72%), looking after the home (64%) and social relationships (63%). Total need was associated with overall service use amongst this clinical group.

Conclusions: Adolescents and young adults with autism reported high levels of total and unmet needs; however, only around half were being helped by services. Our findings suggest that appropriate lifetime services are required to meet the needs of people with ASD.