We, parents of autistic children, often worry about the future. “What will happen when we can no longer take care of Andrew?!?” I didn’t know if my son would be able to live independently or if we’d need to look into homes for autistic adults.
Accessible, affordable, quality housing in a safe, cohesive community enhances every individual’s well-being. It may even be more important for autistic adults, who often spend more time at home due to high unemployment rates, socialize less, and become overwhelmed by sensory stimuli.
Waitlists can last many years, sometimes over 15-20. Research shows two critical points in the lives of autistic adults where housing problems often occur.
The first is between ages 18 and 30 when finding affordable housing is difficult. The second is around ages 50 to 55, when maintaining housing becomes challenging as primary caregivers can no longer provide support, and there is limited help from others.
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How to Transition Your Young Adult with Asperger’s Into the World
Where is the best place for autistic adults to live?
This is a deeply personal decision based on individual needs and the autistic individual’s preferences.
Key considerations include location, type of housing, and level of support needed. Additional factors include:
- accessibility (layout and floorplans, consideration of current and future needs, and the ability to modify existing spaces),
- proximity to services and supports,
- safety,
- the community’s cohesion and acceptance of developmental disabilities.
Michael, for example, prefers the peaceful, quiet environment of a rural setting due to his sensory sensitivities. His support worker visits weekly; otherwise, he generally manages his daily needs.
Before moving into his residence, Michael and his support team, including family members, identified the need for grab bars, wider doorways, and access to a secure, private yard.
These modifications have been crucial in supporting his ability to live independently and comfortably in his new home.
Many major cities today have an extensive range of services, support, and community programs for autistic individuals. They prioritize accessible services and raise awareness, education, and acceptance.
Autism-friendly cities promote job opportunities with inclusive employers who create an environment of belonging. They engage their communities and have sensory-friendly activities and attractions, ranging from museums and theatres to restaurants and sports events.
In 2019, Mesa, Arizona, became the first autism-certified city in the US, designated by the International Board of Credentialing and Continuing Education Standards (IBCCES).
As IBCCES’ Chair Myron Pincomb states, “Mesa, Arizona stands out for the drive of its leaders and the commitment, passion, and engagement of the business community. Individuals with autism or sensory sensitivities can feel confident they will have a positive experience in Mesa.”
Types of homes for autistic adults
There is a wide array of facilities for autistic adults, each designed to meet different levels of independence and support needs. Among these are:
Group homes for autistic adults
In group homes, two to ten autistic adults typically live together in a congregate setting and receive varying levels of support. These often include assistance with daily activities, social skills development, and 24-hour supervision.
Residents usually have their own rooms but share common spaces for meals, recreation, and programming.
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Pros of group homes for autistic adults:
- The structured environment promotes social integration and ensures safety
- There are opportunities for social interaction and companionship
- The sense of community and belonging among residents enhances well-being
Cons of group homes for autistic adults:
- The cost of group homes for autistic adults can be high due to the provision of 24-hour supervision and care
- There can be challenges with compatibility with housemates
- It can be difficult to adapt to a shared living arrangement
Treatment centers are a specialized type of group home that provides intensive, comprehensive care and therapeutic support in a highly structured environment.
They house individuals with complex, high support needs, those with limited skills, or those who have never lived away from home and are not ready to live in a congregate setting.
Costs can be particularly high due to the level of care and therapeutic services provided, but they play a critical role in preparing individuals for eventual transfer to group homes.
Assisted living for autistic adults
Semi-independent living (SIL) offers individuals with moderate support needs the ability to live independently while still receiving staff assistance for specific tasks.
Supports may include help with personal care, medication, housekeeping, meals, and social activities. The type and frequency are tailored to each person, ranging from daily to a few hours a week.
For example, Richard lives in his own apartment and receives several hours of weekly support for household tasks, budgeting, and community services. Sarah lives in a condo with five independent units, where staff are available when needed, while John lives with a host family as an active household member.
Pros of assisted living for autistic adults:
- Individuals have the freedom to make their own choices and manage their daily lives
- SILs offer independence and personal privacy while still providing access to support services when needed
Cons of assisted living for autistic adults:
- Individuals must be able to manage daily living tasks like cooking, budgeting, and home maintenance, which can lead to stress if adequate support is not readily available
- Loneliness and social isolation can occur without consistent social interaction or a built-in support network
One example of a co-housing model has five 4-bedroom houses for 20 participants, along with a community centre with kitchen, fitness studio, organic farm, pool, and enrichment programs.
Independent living for autistic adults
Many autistic adults are capable of residing in their own dwelling and managing daily responsibilities and personal care with minimal or no external support.
In order to live independently, individuals need to develop life skills such as cooking, budgeting, and time management. They need to build a support network of friends, family, and community resources for emotional support and assistance.
It’s important for them to be able to recognize when they need to access services to assist with daily tasks, navigating social situations, and managing health needs.
Pros of independent living for autistic adults:
- Living independently maximizes personal freedom, choice, and control over their environment, fostering a sense of autonomy and self-reliance
- The environment allows individuals to create a living space that suits their sensory preferences and lifestyle and reflects their unique needs and comforts
Cons of independent living for autistic adults:
- Without a built-in support network, the risk of social isolation grows, particularly for those who find it challenging to initiate or maintain social connections
- Challenges managing daily tasks can lead to stress, difficulty maintaining a stable living situation, or even health and safety concerns
No matter what your adult individual’s capabilities are, it’s wise to have a support system in place. Friends, family members, and other community members can provide an informal or formal circle of support.
Family living
An estimated half of all autistic individuals continue to live with their parents well into adulthood. Family members provide ongoing support and care within a familiar environment, with no need to deal with transition-related challenges.
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Pros of family living for autistic adults:
- The stable and familiar environment offers a sense of comfort and security and is particularly beneficial for those who thrive in predictable settings with routines
- The built-in comprehensive support system is tailored to the individual’s needs
Cons of family living for autistic adults:
- Living with family can limit the development of independence and self-reliance, as the individual may remain reliant on family members
- Providing ongoing care can be demanding for family members, potentially causing stress, burn-out, or strained relationships within the household
The biggest barrier, in my view, is permanency. Unless alternative provisions are made, an autistic adult may suddenly be thrust into an emergency situation if their parents can no longer care for them and no other family member or friend can step up.
Tips for choosing the right living option for autistic adults
Navigating our overly complex healthcare and housing systems can seem insurmountable at times. That’s why it’s essential to be proactive and look into housing options early, years before your child needs them.
This will prepare you so that when the time comes, you will know many of your options, which will be less frightening and overwhelming.
Here are some tips for choosing the right living option for your autistic adult:
- Start by assessing their needs and preferences, including the level of independence, support needed, and desired living environment
- Research options thoroughly to understand the level of care and services each provides
- Visit homes to evaluate their suitability, including the quality of facilities, staff, and overall environment
- Consider factors like accessibility, proximity to support services, and social opportunities to align with your child’s lifestyle and needs
Remember to involve and prioritize your autistic adult in decision-making to ensure their preferences and comfort. We also recommend using tools such as housing compatibility questionnaires to support transitions and decision-making.
Whatever you do, talk to other caregivers whose loved ones are living in homes for autistic adults. They have a wealth of information and have always been my go-to!
Financial considerations
It’s critical to develop financial planning strategies to manage the costs involved. Create a detailed budget, research insurance, and determine your long-term financial goals.
Additionally, look into potential funding sources and subsidies, such as government programs, community grants, or disability benefits, which can help offset costs.
If you need help, engage with a financial planner, social worker, or case manager who can provide personalized guidance and support in navigating these financial considerations.
As the American author Alan Lakein says, “Failing to plan is planning to fail.”
Ensuring a perfect home for autistic adults
Housing is a fundamental human right. A well-chosen living arrangement considers your child’s preferences and needs and can enhance their independence while providing support. It fosters a sense of security and belonging, benefits their well-being, and can significantly affect their overall happiness and success.
Don’t be afraid to lobby your government and shout out about those long waitlists and the scarcity of affordable, accessible, quality housing for autistic adults. We need action! The good news is that there’s growing awareness and action. It’s doable!
Andrew recently told me: “Mom, thank you for finding me a great place to live. I know you won’t live forever and be able to take care of me. I know I will always need help, but I am set for life and so happy!”
FAQs
Q: Where do most autistic adults live?
A: Most autistic adults live in a variety of settings, including with family, in group homes, or independently, with or without support. The choice depends on the individual’s needs, resources, and available support systems.
Q: How can one live independently as an autistic adult?
A: Living independently as an autistic adult often involves developing life skills, seeking community resources, and possibly using support services like personal aides or technology to manage tasks and navigate daily challenges.
Q: What is the most autism-friendly city?
A: Mesa, Arizona, is the first-ever Autism Certified City in the United States, making it a leading destination for autism-friendly services and accommodations. Visitors can enjoy the city, knowing that businesses and attractions prioritize inclusivity and meet the needs of autistic individuals.
References:
Scheeren, A. M., Howlin, P., Bartels, M., Krabbendam, L., & Begeer, S. (2022). The importance of home: Satisfaction with accommodation, neighborhood, and life in adults with autism. Autism Research, 15(3), 519–530. https://doi.org/10.1002/aur.2653
Pearce, T. (2021). Housing for adults with autism spectrum disorder (ASD): Creating an integrated living community in Salem, MA. https://scholarworks.umass.edu/masters_theses_2/1067/
Mesa, AZ Becomes First-Ever Autism Certified City in U.S.; International Board of Credentialing and Continuing Education Standards https://ibcces.org/blog/2019/11/18/mesa_first_autism_certified_city/
Felce, David & Perry, Jonathan & Romeo, Renee & Robertson, Janet & Meek, Andrea & Emerson, Eric & Knapp, Martin. (2008). Outcomes and Costs of Community Living: Semi-Independent Living and Fully Staffed Group Homes. American journal of mental retardation: AJMR. 113. 87-101. 10.1352/0895-8017(2008)113[87:OACOCL]2.0.CO;2. https://www.researchgate.net/publication/5611036_Outcomes_and_Costs_of_Community_Living_Semi-Independent_Living_and_Fully_Staffed_Group_Homes
Scheeren, A. M., Howlin, P., Bartels, M., Krabbendam, L., & Begeer, S. (2022). The importance of home: Satisfaction with accommodation, neighborhood, and life in adults with autism. Autism Research, 15(3), 519–530. https://doi.org/10.1002/aur.2653
Housing through an Autism Lens, Autism Alliance of Canada https://www.autismalliance.ca/wp-content/uploads/2022/06/CASDA-Policy-Brief_-HAL-5.pdf
