Healthcare experiences of young adults with autism spectrum disorder

Abstract

Purpose

Characteristic challenges that define autism spectrum disorder (ASD), coupled with comorbid conditions and poor communication with providers, can lead to inadequate healthcare. The majority of previous work has focused on children. The purpose of this paper is to examine the healthcare experiences of young adults with ASD within the US healthcare system.

Design/methodology/approach

An online questionnaire was utilized to examine: the accessibility of healthcare for those with ASD: do they make their own appointments, fill out paperwork independently, go in the examination room on their own; the quality of care they receive: what are their medical needs, how effectively can they communicate their needs, do providers understand their disability; and the outcomes of care: do they understand their recommended care, can they follow healthcare instructions accurately, are they satisfied with the care received. The authors compared responses of those with ASD (n=16) with those of parents of adults with ASD (n=50), as well as a matched comparison group of young adults without ASD (n=42) for statistical differences using the Fisher Exact test. The authors also asked parents about their time costs of assisting their adult children through the healthcare process.

Findings

The results suggest that those with ASD overestimated their ability to manage their healthcare needs, felt more positively about the healthcare they received than was warranted, and were significantly less independent in managing their healthcare than their peers. Parents experienced losses and costs in terms of lost productivity, household work, and personal time.

Originality/value

This study furthers the understanding of the healthcare experiences of young adults with ASD which is crucial to dissecting problems which hamper access to quality care.

Citation

Hillier, A., Galizzi, M. and Ferrante, K. (2017), "Healthcare experiences of young adults with autism spectrum disorder", Advances in Autism, Vol. 3 No. 4, pp. 206-219. https://doi.org/10.1108/AIA-06-2017-0014