Over the next decade, between 500,000 and a million children with autism will age into adulthood. Advocates say when it comes to giving these individuals independent lives, we are not prepared. One group of Bay Area parents started planning for this back in 2009.
Gwen Fisher was diagnosed with autism at the age of 7. When she went to college, she left Cupertino, California and moved into the dorms at The University of Iowa.
She gave college a try, but the culture of football, being away from home, and the cramped quarters eventually got to her. She often felt misunderstood, and lonely.
Gwen moved back in with her folks, joining the almost 90 percent of young adults with autism who live with their parents at some point. And like two thirds of young adults with autism, Gwen was unemployed. It felt like a step backwards. And then, her parents discovered Sweetwater Spectrum.
Sweetwater, a nonprofit organization in Sonoma, California, is a co-housing community for adults with Autism. It was founded in 2009 to address the high rates of unemployment and isolation that these individuals face. It’s goal is to help young people like Gwen find belonging and a sense of purpose.
It was not love at first sight.
“I just didn't think it was the right fit at first,” Gwen says.
She was concerned that she wouldn't connect with any of the other residents. But then the director of Sweetwater called and said there was a person Gwen might like to meet named Tamsin Kearns.
“And so we drove up here, I think it was on a farm night, and we ended up clicking,” remembers Gwen. “That's when I decided to move up here.”
Gwen moved into one of the houses. In fact, the same house as Tamsin.
“There’s residents who need help with hygiene, help with taking their medication, help with cooking and stuff,” Tamsin tells me. We’re sitting at a table in the Community Center during the weekly potluck.
“And then there's...” she hesitates. “The more higher functioning are people that just need help with anxiety management, taking the doctor’s appointments. There is a spectrum here.”
Tamsin is an outspoken advocate for her community. She’s done several interviews on this topic already. When Sweetwater first opened, it got a lot of attention because its architecture, which was designed with autism in mind, was somewhat novel.
The buildings were built to minimize sensory overload. The insulation in the ceiling absorbs sounds, non-vinyl flooring reduces synthetic smells, natural ceiling ventilation keeps rooms cool without the shadow patterns or down-bearing air from a ceiling fan.
But in speaking with residents like Gwen and Tamsin, it’s not the architecture they bring up. The thing that makes Sweetwater such a success is choice.
“You have the potlucks, there’s splash time on Fridays, there's a farmstand,” Tamsin says. “There's a lot of activities, but they're not mandatory. They’re not like, ‘You have to do this thing, you have to do that.’”
For Tamsin, that means volunteering at a local elementary school. For Gwen that means volunteering at a no kill shelter, even though she’s allergic to cats. And for some residents, that even means paid work.
Carolyn Klebanoff, who is one of the founders of Sweetwater, is also the parent of an adult with autism.
“She was diagnosed at the age of two,” she tells me. “She's fairly significantly impacted, so she had a lot of support through her school age years, and at some point when she was about 13, we started thinking about what her adulthood would look like.”
Carolyn says that every year in California, 5,000 individuals with autism age into adulthood. She reiterates the stats about how many of those people are living at home and unemployed, which for her, points to how unprepared we are to provide opportunities for adults with autism.
“There hadn't been a lot of forethought and really still hasn't been a lot of forethought as to what happens to these individuals when they finish their school age years,” explains Carolyn. “That's how we started thinking about founding something, because there wasn't anything out there that would work for her.”
Carolyn met with other families in the bay area, and together, they began to brainstorm a solution. They ran focus groups in Marin and Sonoma county, they spoke with local experts, and they travelled the country, looking at what already existed.
The guiding principle that emerged from that research, which is scrawled in big letters over the doorway in the community center is Life with Purpose.
“When we were running our focus groups to figure out what was important to people out there, it was so apparent that loneliness is a huge issue for many, many individuals with disabilities.”
For Carolyn, the solution to loneliness isn’t just getting a bunch of people in a room, although she’ll admit that’s important. It’s making sure everyone has a sense of purpose.
“For some people purpose involves paid employment, and for some people purpose involves giving back to the community, and for some people purpose involves just simply being able to control your own environment outside of your own parental home.”
Carolyn is quick to point out — as you might be thinking — that this applies to everyone. But when you consider that two thirds of young adults with autism are unemployed, the idea of a life with purpose becomes crucial.
“And so we have to support them in both defining what purpose means, and then trying to achieve it.”
Since Sweetwater opened its doors, it’s housed 17 residents, and seems to have been a success for most of them--only 2 have left. In addition to the farmstand and volunteer jobs, there are potluck nights, classes, and weekly outings the residents can take part in.
But after three visits to the campus, I get the sense that the ability to replicate this model may be limited. According to Carolyn, the cost of living here is nearly three thousand dollars a month.
Sweetwater was well-funded by private donations, and although nearly a third of the residents get financial assistance, that couldn’t happen without the two-thirds of families who can afford the full expense.
“At the moment, it would be a struggle, to develop something like Sweetwater without knowing where your funding is coming from,” Carolyn tells me.
She says she knows the limits of relying on private donations. She dreams of a future where supportive-living communities can be financed by the government and accessed by anyone, regardless of their financial status.
Having a prototype for what that could look like, though, gives Carolyn hope. Already, there’s a Sweetwater South planned in Los Angeles, and Carolyn is organizing to build another in the Bay Area.
“The future looks happy for the people who live here,” she says. “Which is such a great thing. And this is designed to be their forever home. They will hopefully continue to be happy and age in place. So how great is that?”
As for Tamsin, she’ll continue her volunteer work at a nearby elementary school. Gwen is returning to school at a local Junior College this fall.
“I used to be so nervous whenever I went back to school,” Gwen says. “Now I’m excited. It’s kind of a relief. I’m like, ‘Yay, I’m going back to school!’ And hopefully, you know, meet new people and get my stuff together.”