Independent living in adults with autism spectrum disorder: Stakeholders' perspectives and experiences.
Adults with autism say calm minds, steady money, and real community ties decide if they can keep their own keys.
01Research in Context
What this study did
Ghanouni et al. (2021) talked to the adults with autism, parents, and service staff. They asked what makes living on your own hard or possible.
The team ran small group chats and one-on-one interviews. They coded every quote to find common themes.
What they found
Three pillars came up again and again: stay calm and healthy, handle money, and fit into the neighborhood.
When any pillar wobbled, the whole plan fell. One missed bill or one panic attack could bounce an adult back to mom’s house.
How this fits with other research
Billstedt et al. (2005) tracked 120 autistic adults for two decades. Only four lived alone, matching the new worry that independence is rare.
Krafft et al. (2019) asked parents of teens what they fear. The same three needs—health, money, community—top both lists, so the gaps start early and stay.
Lineberry et al. (2023) showed less than a large share of UK adults get any follow-up after diagnosis. Parisa’s folks echoed the silence: no one tells them how to pay rent or find a doctor who gets autism.
Why it matters
Stop writing vague “independent living goals.” Pin each goal to one of the three pillars: self-regulation, money, or community. If the plan misses a pillar, add it before the next team meeting.
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Join Free →Open the current ISP and tag every goal with S (self-reg), F (finance), or C (community). Add the missing tag where you see a gap.
02At a glance
03Original abstract
UNLABELLED: Independent living is a basic human right that enables individuals with disabilities to determine where they live, who they live with and what kind of support that they receive. Limited research exists regarding the challenges that adults with autism spectrum disorder (ASD) may face when attempting to live independently. Given the importance of independent living for adults with ASD, this study aimed to examine the perspectives of stakeholders about independent living among adults with ASD. METHODS: We recruited a total of 19 stakeholders including adults with ASD and parents of adults with ASD from Canadian provinces. In-depth, semi-structured interviews were conducted to identify factors affecting independent living among adults with ASD. Interviews were transcribed and analyzed using thematic analysis to identify overarching themes. RESULTS: Three themes emerged in our findings, including: a) Psychophysical stability and daily living; b) Financial management and planning; and c) Integrated community living and independence. CONCLUSION: The findings from this study suggest that adults with ASD face several challenges related to independent living. Factors related to psychophysical stability and daily living, financial management, and integrated community living and housing were all found to influence the ability of adults with ASD to live independently. By exploring stakeholders' perspectives of independent living for adults with ASD, this study provides some insight that can help inform the development of programs and services to facilitate independent living for adults with ASD.
Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.104085