Services for Family-Dependant Adults with Autism Spectrum Disorder, Why Some Are Received and Others Are Not

Background: Autism, a neurological difference is a large spectrum of conditions characterized by a variety of communication, sensory and social disabilities which lead to important challenges in day-to-day activities. While there has been an increased focus in providing early intervention programs for children with autism spectrum disorder (ASD), there remains a shortage of programs and services tailored to autistic adults with ASD, specifically to support employment and independence. The literature indicates that employment rates range between 4-49%, and as many as 70-80% are not living independently, with family members being the primary source of support and care.

Objectives: This research sought to determine priorities in terms of service needs for autistic adults with ASD living with family and examine factors influencing whether or not these services were being received.

Methods: This study included 104 respondents from the CONNECT project cohort (n = 164) who completed the needs assessment survey and lived with one or more family members: 41 self-reporting adults with ASD (aged 19-55 years) and 63 adults with ASD (aged 18-63 years) whose information was provided by their caregivers. Frequency distribution were calculated to examine service need priorities and reasons behind their lack of receipt. Logistic regression was used to examine which factors were associated with receiving priority services.

Results: The mean annual income of the respondents was $11,307, mainly originating from provincial government support and family. 56% of adults with ASD living with family members were unemployed and had a mean number of 1.96 co-occurring mental health or neurodevelopmental conditions. The top service priorities endorsed by over 40% of the sample included employment counselling, housing/residential options, life skills training and provincial disability program. Despite being identified as top service priorities, these services were only being received by 1.9 to 37.5% of the sample. The most common reason for not receiving these services were lack of availability for all except the provincial disability program (not meeting criteria). Adults who perceived themselves as having good mental health had a higher likelihood of receiving life skills training and individuals with intellectual disability were likelier to receive provincial disability program. Adults receiving government support to assist with accessing services were likelier to receive both life skills training and provincial disability.

Conclusions: Overall, the results of this study highlight the need for greater access to services that support employment and independence for adults with autism. Our results also suggest that achievable changes, such as increased mental health care services and offering more government support to assist with accessing services, could meaningfully improve the outlook for autistic adults with ASD seeking to live full and independent lives.