April is Autism Awareness Month. Initiatives from a variety of organizations will shine a spotlight on autism to increase awareness and to celebrate individuals with autism: their strengths, contributions and unique perspectives. But for parents of adults with autism and intellectual or developmental disabilities, especially aging parents, underlying it all is a persistent, difficult question: What will happen to our children when we are gone?
For years, we have heard about the increasing prevalence of autism. In the early 1990s, the rate was 1 in 150 children. By 2022, the rate was 1 in 31, according to the Centers for Disease Control and Prevention Autism and Developmental Disabilities Monitoring (ADDM) Network. These children grow up, and many will need housing and community support for the rest of their lives. And while there are numerous providers to help families navigate the sometimes overwhelming network of support services, there is one area that has been overlooked: housing.
Approximately 87% of autistic young adults in the U.S. live with their parents or other family members after high school. Research indicates that over half (50% to 80%) of all autistic adults, including middle-aged individuals, continue to reside with family members, reflecting limited opportunities for independent living. In Erie County and throughout Pennsylvania, thousands of adults with autism and other developmental disabilities live at home with their parents, according to the Pennsylvania Autism Census Update, also known as the Pennsylvania Autism Census.
Our homes are a safe place where our children are understood and supported. In addition to housing, parents provide emotional support and daily living assistance including managing appointments, finances, transportation and daily routines. We advocate for services, communicate with providers, and step in when problems arise. But parents get older, too, and many aging parents find they eventually need assistance themselves. Some of us are single parents who manage without any involvement from the other parent, not even the assurance of knowing another parent is there should something suddenly happen to us.
But someday we won’t be able to do these things and that’s where the fear begins. Each passing year brings a growing sense of urgency and fear about the future. The hardest part of parenting an adult with autism is not what we face today; it’s the uncertainty about tomorrow.
I’ve been asked, “What about a group home for your son?” While a group home might be appropriate for some, for many others it is not. Autism is a spectrum condition.There is great diversity from one individual to the next and different individuals have different housing needs. There isn’t one solution that’s appropriate across the board. And many adults with autism desire to live independently with supports, rather than in a group home. But appropriate and affordable housing options for adults with autism and intellectual disabilities are limited, and the programs that provide supportive housing or residential services often have long waiting lists that take years, even decades. Housing costs are an issue, too. Many adults with disabilities rely on fixed incomes such as Supplemental Security Income. Even in areas where rents are more affordable, housing is often still too costly.
The need is urgent. According to the U.S. Census data, in Erie County there are more than 42,000 residents with a disability, including over 14,000 with cognitive disabilities such as autism or intellectual disabilities. These are our neighbors, classmates and coworkers. In Pennsylvania, nearly 13,000 adults with intellectual or developmental disabilities are waiting for state-funded services that enable community living. These individuals face median wait times of 2.6 years for Medicaid-funded waivers, a situation driven by insufficient funding, staff shortages, and growing demand, according to the Pennsylvania Health Law Project. According to the PA Waiting List Campaign, as of Dec. 31, 2025, there were 4,216 individuals in the “emergency” category, comprising 3,191 adults (21+) and 1,025 children (below 21), defined as those at risk and in need of services immediately. Many of these emergency situations are the result of aging parents who can no longer provide care — a reality more families are facing every day. Even with recent progress, more than 11,000 people remain on waiting lists statewide. For many families the waiting list is not just a number — it’s a timeline we can’t control.
This creates enormous stress on families who are trying to plan responsibly for the future. We lie awake at night wondering what will happen to our sons or daughters if something unexpectedly happens to us. Who will make sure they have a safe place to live? Who will help them navigate daily life? Who will advocate for them if they can’t advocate for themselves? These are questions we think about every day.
The consequences of not addressing this issue can be severe. While autism affects only a small percentage of the general population, studies suggest it may appear at much higher rates among people experiencing housing instability. Research indicates a high prevalence of cognitive and developmental disabilities among the homeless population, with estimates suggesting 30% to 40% experience cognitive impairment (including autism, intellectual disabilities, traumatic brain injury, and ADHD), significantly higher than in the general population. And there’s the issue of “hidden homelessness,” insecure housing such as couch-surfing, doubling up with family, or precarious rentals — that isn’t counted in official statistics. For families who have spent decades caring for a child with autism, the possibility that our children could someday face homelessness is unimaginable. Yet without adequate housing and support systems, that risk becomes very real.
In Erie, we are fortunate to have dedicated nonprofit organizations and service providers that support people with disabilities. Their programs provide residential homes, life-sharing arrangements, and support services that make independent living possible — but demand exceeds the available housing options.
Just as urgent as the need is the question of whether our community will act in time to ensure that people with disabilities have safe homes and the support they need to live with dignity. Addressing this challenge requires collaboration between local government, housing authorities, nonprofit organizations, private developers, and community partners. Expanding affordable and accessible housing, reducing waiting lists, increasing funding for supportive housing programs, and planning for the needs of adults with disabilities as parents and caregivers age are essential steps. Most importantly, we need to recognize that this is not just a disability issue. It is a community issue. Adults with autism and intellectual disabilities are members of our community. When they have stable housing and support, they can lead meaningful and fulfilling lives.
As parents, that is all we want for our children.
We have spent our lives loving them, advocating for them, and helping them build the skills they need to navigate the world. Now we are asking our community to help ensure that our children will still have the opportunity to live safely, with dignity, and as part of the community they call home. For us, the future is not an abstract policy discussion. It is the life our children will live after we are gone, and that future depends on the choices our community makes today.
A coalition of parents of adults with autism, along with local advocates, is addressing these issues in the hope that solutions can be found. We have invited key government officials and legislators to meet with us so we can educate them about this urgent need and plead with them to take action. By working together to expand appropriate and affordable housing, Erie County can help ensure that adults with disabilities are not left behind.
Stephanie Hall is a single mother of a 29-year-old son with autism. She has always maintained that her two most important roles are parent and advocate. She is involved with EACH: Erie Advocacy Collaborative for Housing, a coalition of parents of adults with autism. She and her son have played a major role in launching Band Together Erie, an organization focused on music and social opportunities for individuals with autism.