Augmenting Primary Health Care for Adolescents and Adults on the Autism Spectrum with Intellectual Disability

Background:  Adults on the autism spectrum with intellectual disability experience unique health-related needs, difficulties accessing adequate health care and exhibit poorer physical and mental health outcomes in comparison to the general population. The Comprehensive Health assessment Program (CHAP) was developed by Prof Nick Lennox for adults with intellectual disability to improve access to healthcare, enhance communication between adults with intellectual disability, their families/caregivers and their general practitioner (GP), improve integration of healthcare and educate all those involved in the process. Three randomised controlled trials have shown this process significantly increases health screening and promotion and the identification of new disease in adults and adolescents with intellectual disability.

Objectives:  The objective of this project was to develop a comprehensive health assessment program for adults on the spectrum with intellectual disability.

Methods:  This project adapted the CHAP for adults and adolescents on the autism spectrum. It was informed by a review of the literature and feedback from an advisory group comprised of adults on the spectrum and their caregivers, health professionals and researchers working with adults and adolescents on the spectrum with intellectual disability.

Results:  The review of the literature identified additional items and resources to be included in the adapted CHAP. This included the inclusion of a section about the sensory experiences of the person on the spectrum, information about their diagnosis of autism, additional questions about their gastrointestinal health, unusual eating patterns and additional information about strategies for working with adults on the spectrum with intellectual disability for the GP and health practice nurse.

The CHAP was adapted to reflect the inclusion of these items and resources, and then provided to the advisory group for feedback. These suggestions resulted in a number of changes, most noticeably; the change of language to first person language, the wording of questions regarding sexuality and human relations to illustrate that individuals may be transgender or identify with another gender and re-wording the mental health questions to include a question about self-harm. Feedback from advisory group members suggests the adaptation is appropriate and feasible for use with adults and adolescents on the spectrum with intellectual disability.

Conclusions:  The adapted CHAP will be trialled with Australian adults and adolescents on the autism spectrum with intellectual disability. Feedback will be sought from the individual, their support person/s and health professional. This health assessment tool has the potential to improve health outcomes for adults and adolescents on the spectrum with intellectual disability.