Background: Autism is a developmental disability that affects how individuals experience the world. Each Autistic individual experiences Autism in their own way, meaning that the level and type of assistance in their everyday lives vary widely. A shortage of programs and services tailored to Autistic adults exists worldwide, and the current gap between needs and services is likely to worsen as the growing number of Autistic children being diagnosed reach adulthood. This research sought to determine priorities in terms of health and social service needs of Autistic adults and to examine factors influencing whether or not these services were being received.
Methods: Through a multistakeholder approach, researchers and Autistic adults codeveloped the Maritime Provinces Needs Assessment Survey and collected data from August 2017 to February 2018. The research team engaged Autistic adult partners, including one that was project colead, as full partners. We recruited survey respondents from three Maritime Provinces using mainly social media and local Autism networks. We used Poisson regression analyses to identify factors most strongly associated with the number of unmet needs reported by Autistic adults.
Results: In total, 260 respondents completed the needs assessment survey: 77 self-reporting Autistic adults (aged 19-55 years), 87 Autistic adults (aged 18-63 years) whose information was provided by a proxy respondent, and 96 professionals working in the field of Autism. Autistic adults reported a mean of 2.1 ± 1.5 (self-reported) and 2.8 ± 2.1 (proxy-reported) services wanted but not received. The number of mental health and neurodevelopmental conditions, unemployment, and perception that government support is insufficient were positively related to unmet needs.
Conclusions: Overall, the results of this study highlight considerable gaps among the support needs of Autistic adults. The identification of factors associated with a higher number of unmet needs helps identify potential subgroups requiring more attention.
Lay summary: Why was this study done?: There is currently a shortage of programs and services for Autistic adults. Little is known about which services are most important to Autistic adults and which factors are associated with not receiving them.What was the purpose of this study?: Our goals were (1) to determine the service need priorities of Autistic adults and (2) to examine factors associated with unmet needs.What did the researchers do?: The researchers invited health professionals, service providers, policy makers, Autism advocates, as well as Autistic adults and caregivers of Autistic adults to participate as part of the project team. In the early phases of the project, we named an Autistic adult colead of the project. In doing so, we acknowledged that conducting relevant research on the Autistic adu