Story at a glance
- The vast majority of autistic adults live with their parents, making them vulnerable when their caretakers die.
- One possible solution is integrated communities, where autistic people live among neurotypical residents.
- "You can talk with other people, and they help you out," says one autistic resident of such a community.
Some 87 percent of autistic adults live with their parents, according to the Autism Housing Network, and almost 1,000,000 of those live with family caretakers that are older than the age of 60. But what happens when the parents die?
Integrated communities are now emerging nationally as a possible solution where both neurotypical and developmentally disabled residents share living space in an opportunity to thrive together.
A housing model that best illustrates this is the Faison Residence in Virginia’s capital city. Located off West Broad Street in Richmond, the apartment complex dedicates one-third of its 45 units for adults with autism and other developmental differences.
“The Faison Residence is designed to develop and foster natural relationships between individuals in our program and members of their community,” says Director of Adult & Residential Services Matthew Osborne, in an interview with Changing America. “Our program apartments are scattered throughout the building, so their neighbors truly are their community.”
Eighteen individuals on the autism spectrum currently live in a one-bedroom unit or as a roommate sharing a two-bedroom apartment, according to Osborne, who says the program can support 24 people. Other residents in the complex include young working people, retirees with pet companions and families with children.
"We can all live together in harmony," says 20-year old Sam Algumaei, a Virginia Commonwealth University student who lives in the complex with his family. About his neighbors on the autism spectrum, Algumaei says, "We welcome them. They're people like us."
Alexandria, 14, a high school student, lives here with her brothers and mom. "I think it spreads awareness and helps you understand what they're going through," she says about her neighbors with special needs.
One 29-year old young man who is on the autism spectrum says he is one of the first people to have moved into the Faison Residence. He's not sharing his name to maintain his privacy but says that his family wanted him to live in a safe community alongside caring neighbors. "You can talk with other people, and they help you out," he says. Having that connection with the general population "has helped me develop my skills," he says.
Adults with autism tend to fall through the cracks, according to the Autism Housing Network. Less than 3 percent of autism research funding is for adult issues — even though autistic children grow up to be autistic adults. More than 75 percent of autistic adults report their top concern in securing housing is not being able to afford it. According to the National Conference of State Legislatures, unemployment rates for people with disabilities are higher across all education levels compared to those without a disability.
In addition, 48 percent of autistic adults report feeling lonely. Some 53 percent were not invited to social activities with friends for more than a year after high school.
But the emerging trend of integrated communities is being seen as a solution to providing connection with others.
“Individuals with autism often have difficulty developing relationships due to deficits in social communication skills," says Osborne. "Our program designs activities where individuals can learn these skills with our staff and with each other. Then our program sets up opportunities for individuals to use and practice these skills with their neighbors and other members of their community," he explains. "Additionally, some of these skills are strengthened organically, without any formal programming, due to the integrated nature of the Faison Residence.”
It’s not easy for families who have loved ones with autism. With ever-increasing waitlists nationwide, limited housing options and inadequate lifelong support, many families work tirelessly trying to find solutions to ensure their grown children who have autism will have a chance to make it in the future.
"It is driving collective efforts of families coming together outside of government," according to a recent article in Forbes, about the efforts to create autism-focused intentional communities as one solution to meet the need.
Mike and Katie Sweeney of New York State have a 21-year old son on the autism spectrum. Mike is a self-direction community developer focused on jobs and housing resulting in “interdependence communities for the developmentally disabled." He's also on the board of Endeavor 21+ Foundation, which is dedicated to helping those on the autism spectrum develop life skills, including a flourishing integrated living community located in Rockland County, N.Y., where both neuro-typical and developmentally disabled residents live together.
"This is where I spend the majority of my time ,as we are trying to answer the ‘big question’ of ‘what happens when we [the parents] die?’” Sweeney says. "Obviously it is a complicated issue, and the answer is a day-to-day build up at this unique 200-acre campus, [about 30 miles] north of Manhattan in Rockland County." Seeing the need for similar communities across the country, Sweeney asks, "Now, how do we expand and replicate this model and its mission?"
The Sweeneys are also actively supportive of the brand new ArchCare at Saint Teresa on Staten Island, N.Y., a family-governed, self-direction community with residents expected to move in by January 2020. The apartments were created from an unused convent building at St. Teresa’s, which was just converted into individual apartments for young adults with autism.
As dedicated and loving parents race against time to ensure their beloved children will have a safe space and a chance for a productive life after the parents have passed, the Autism Housing Network offers these recommendations to support families:
- Always say hello and talk to the individual with autism, even if it seems that they are not listening or cannot talk back to you. Do not treat them as if they are not in the same room.
- Never talk to them in a voice or tone typically reserved for children if they are an adult.
- Share that you would be happy to be of assistance.
- Offer any help and support to the siblings of people on the autism spectrum, as they may not be given as much attention or support as their siblings.
- Call parents or caregivers, if only to at least say hello. Ask if there is something you can help them to do. Families often will not reach out for fear of burdening others.