Housing for Adults with Autism: A Dilemma for Many
Adults with Autism Ask: Where Will I Live?
Remember how nervous and excited you were to move into your first apartment? Or how bittersweet it felt to take your kids to college? Leaving your childhood home is a rite of passage, a sign of independence, and a marker for adulthood. For many young adults today, economic realities are delaying this milestone or limiting the options.
For individuals living with autism or an intellectual disability, the challenge of finding quality housing is further complicated by scarce inventory, restrictive rules and regulations, discrete discrimination, rising costs and, above all else, the very real and worrisome possibility that living independently will lead to social isolation and limited access to a reliable support system.
It’s little wonder that many adults with autism continue to live in their childhood home for most, if not all, of their lives. It is estimated that more than 85 percent of adults with autism live with their parents during their early 20s. Others may live with a family member or a friend who can help them with cooking, cleaning and other activities of daily living, as well as provide emotional support and companionship. Ideally, in-home services are secured when needed, but they are cost-prohibitive to many families.
Even in the best of circumstances, finding housing can be extremely challenging for adults with autism and their families. Options are limited. In-home services are expensive. Funding is scarce. Clients’ needs are widely variable, ever changing and unique to each individual.
The one question that keeps parents of autistic children up at night: What will happen to my adult child when I am no longer able to care for them?
At some point, whether it’s right out of school or well into middle age, adults with autism will need or want to move out of their childhood home. How will they get by? Who will help them with personal hygiene and other daily activities? How will they pay for services? Who will keep them company? How will they get to work, if they are able to work?
So many questions. Not enough answers. Many parents are confused or disheartened by the lack of housing options for their child with autism. Jim and Nancy Richardson understand the frustration all too well. When they began their search for a residence for their adult son, they quickly learned that none of the housing options they found checked all the boxes — not even a fraction of them. “Our son is 29. He has autism, but he is also very high functioning. He would like to live independently, but not alone,” explains Jim. With a fast-growing number of adults being diagnosed with autism every year, there are many more like him.
The Need for Sustainable, High-Quality Housing Is Growing
There are currently around 6.5 million people living with autism or an intellectual disability in this country, a number that is likely to increase substantially in the coming years due to the rising number of children — one in 44 — diagnosed with autism spectrum disorder (ASD).
Over the next decade, it is estimated that 707,000 to 1,116,000 teens will age out of school-based autism services. That translates into 70,700 to 111,600 each year, according to Autism Speaks. Many of these young adults will want and be able to get a job, an apartment, or both, only to confront countless barriers.
When the time comes to investigate housing options, parents may be caught off guard by the scarcity of options for their adult child. Already overwhelmed by the day-to-day challenges of caring for their child, they realize they may be looking at caregiving as a lifelong, 24-hour commitment. No matter how much you love your child, this can be emotionally, physically and financially challenging to an older adult. Conversely, no matter how much a child loves their parents, it’s healthy to want to live the fullest, most independent life possible.
Do Your Research: Identify the Best Scenario Before You Need It
Richardson’s advice to all parents is to not wait until you are in a crisis. Do your research now. You will discover that there are many different levels of care available for adults living with autism, from very little support to 24-hour supervision. You first have to identify the best possible solutions for your child.
Jim Richardson determined that the best option for his own son, to avoid loneliness and isolation, was a cohousing or co-living situation, but not a group home. “Every situation is different. A group home is for individuals who are very seriously autistic,” he says. “My son doesn’t need assistance. He is very self-sufficient; he needs access to transportation or to live where he can walk to shops and services. But he also needs privacy, and some support and companionship.”
Richardson knew what he was looking for to meet his son’s needs. He just couldn’t find it, so he decided to create it himself. In 2019, he founded a nonprofit organization called Front Porch Cohousing to provide adults experiencing neurological differences with better housing options to address their specific needs. “Our vision is to establish small, inclusive cohousing developments that encourage and respect each other’s privacy while building community, so no one feels isolated or alone.”
Like everyone else, individuals with autism have different strengths and weaknesses that come into play when choosing housing. But they also have highly variable tolerances that can make them more sensitive to different sounds and smells and people. Overstimulation can be a problem for many individuals with autism; communication can also be a real challenge. As a result, the need for private space is fairly universal. Even if a bathroom must be shared, a private bedroom is needed.
Possible Housing Options for Adults with Autism
- A single-family home or townhouse
- An apartment that has a common area for residents
- A multi-family attached home
- An assisted living facility
Even as organizations like Front Porch find long-term, neuro-inclusive solutions, parents should look into short, stopgap measures like single-family homes that can house up to five individuals, some with and some without intellectual disabilities or autism. Yet the need continues to outweigh the number of available housing solutions. And for some families, the need is urgent. “Parents may be getting up in years and can no longer physically care for their child,” Richardson says. “They need help now.”
Find Short-Term and Long-Term Solutions
Individuals living with autism often have special housing needs that may include:
- Extra space, special lighting, a private bathroom, a quiet room
- Services at their residence
- A secure location
- Access to transportation
- Flexible living arrangements
It is unlikely that you will be able to find a situation that meets all of your child’s needs right away. You should consider adding your child’s name to a wait list for a quality residence that addresses their long-term needs, perhaps offering tiered levels of care, similar to assisted living for aging adults.
And do it soon. As you wait, choose your short-term solutions carefully. For some, living alone can be extremely lonely as well as potentially dangerous, which is why Richardson is such a proponent of cohousing solutions with varying levels of support.
“We learned during COVID that connection to others is important for our mental health. This is true for everyone, but for individuals with autism who often have a harder time forming relationships, due to communication challenges, isolation is a serious problem for many. Neuro-inclusive cohousing provides a supportive environment where people can turn to one another when they need help,” adds Richardson. “You may be caring for your child now, providing the best possible level of care. It’s hard to let that go, but you have to remember that you may not always be able to do that,” he notes.