Sweetwater Spectrum in Sonoma California, is one of the new wave of intentional autism-focused communities. They are being built on twenty-first century sensibilities, but also harken back to the utopian communities of America’s past.
Sweetwater Spectrum
(The first of a series on new structures emerging in 2019, outside of government and rooted in mutual support. Though focused on adults with autism, these structures of housing, employment and social inclusion hold lessons well beyond autism.)
“When I’m gone, what will happen to my child with autism?”
For all who have adult family members on the autism spectrum today, this thought is never far from our minds. It drives our individual searches for housing options, financial planning, and, most of all, independent living efforts. And beyond the individual activity, in 2019 it is driving collective efforts of families coming together outside of government. Among the most active of these efforts are the autism-focused intentional communities.
The intentional communities are still small in number, and most are in planning stages. However, they already show the possibilities for extra-governmental engagement of families, wealthy and poor, of all races and ethnicities. They provide ideas of how adults with a range of developmental differences (not just autism) might live in the future, inside and outside of the physical spaces of these communities.
Sweetwater Spectrum in Sonoma County, around 30 miles north San Francisco, was one of the first of the new wave of stand-alone autism focused communities when it opened in 2013. It stands on 2.8 acres, and combines housing–four homes of four bedrooms each, home to 16 adults with autism–with a range of life skills training, educational and recreational activities, in collaboration with the service agencies contracted to provide individualized support. In addition to kitchens within each home, it has a common kitchen, exercise studio and pool, library, and organic farm.
Sweetwater took seven years to develop. Carolyn Klebanoff , one of the Sweetwater founders, started conversations with other parents in 2006 about long term living alternatives for their children with autism. Klebanoff then was the parent of a daughter on the autism spectrum, 13, who she thought would need living supports throughout her lifetime. “We began to think of a community not only in which adults with autism could live safely, but also one in which they could develop friendships with others, especially peers, and interact with the wider community,” Klebanoff recalled. The Sweetwater residents today represent the range of the autism spectrum. A number are non-verbal; while others have varying levels of language and abilities to interact outside of Sweetwater.
Sweetwater encourages residents to participate as much as possible in social and volunteer activities in nearby Sonoma. It has adopted the slogan ,“Life with purpose”, and believes each of its residents can find purposeful activities outside its walls. Outside employment is encouraged, and at present two of the residents have paid employment.
There is no limit on the time that a resident can live at Sweetwater, and Klebanoff sees it as a lifetime option for some. So far, parents have commented to Klebanoff how their children have taken to the community. “I worried that my daughter would not want to be living apart from us”, one parent recalled, “but on a day trip recently, my daughter said ‘I want to go back home to Sweetwater’.”
In nearby Alameda County, The Dream Center, is a second operating autism-focused community, like Sweetwater the result of families coming together to create a hoped-for long term living situation for their children and others. “We decided to turn worries into positive action”, Anna Wang explained at a recent Autism Society conference. Wang, with her husband Albert, created the parent group, which went on to build a 40-unit complex housing 26 adults with autism and other developmental differences. Three additional autism-focused communities are in planning in the Bay Area, including the Big Wave Project in Half Moon Bay.
Nationwide, First Place in Phoenix, a 55-unit community, and 29 Acres in North Texas, envisioned to house 56 adults, are two of the larger parent-driven communities. “We couldn’t find anything, so we just decided to do it ourselves” explains Debra Caudy, one of the founders of 29 Acres. Caudy, with her husband Clay Heighten, purchased the land for 29 Acres, and they are organizing investors and parents. Denise Resnick, founder of First Place, established the Southwest Autism Research and Resources Center in 1997, and then spent years studying residential alternatives in preparation for First Place.
Like Sweetwater, First Place encourages residents to get out of their apartments as much as possible, utilizing the nearby transit network, becoming part of mainstream Phoenix life. First Place cultivates ties with employers, and its residents are employed in local businesses.
The growth of these communities is leading to parent activity across the country. Earlier this month, Sweetwater Spectrum held a “Replication Symposium”, which more than 75 persons from around the country attended—far exceeding expectations.
At the same time, for the foreseeable future, these communities will be a niche market. Combined, including the ones developed and in planning, they total fewer than 1000 units. In contrast, Drexel University’s Autism Institute estimates that more than 600,000 persons with autism will enter adulthood in the next decade in the United States.
David Kearon, director of Adult Services at Autism Speaks, hears from families every day who are searching for supportive housing options. Kearon notes that the stand-alone communities are helping to spur variations of their structure, aimed at balancing safety, independence and inclusion.
One emerging housing model mixes independent living with varying degrees of support in a general residential setting. The Faison Residence in Virginia, a 45-unit apartment complex, sets aside a third of its units for adults with autism and other developmental differences. Similarly, the David Wright Apartments in Pennsylvania, a project of the Autism housing Development Corporation, sets aside 21 of its 42 units for adults with autism.
Additional models involve smaller groups of two to four young adults with autism living together, with families pooling resources and supports. Kearon summarizes, “We want to maximize options, and community involvement, and empower autistic adults and their families to make choices.”
It is worth noting that the autism-focused communities bear connections to earlier stand-alone utopian communities in America’s past. They do not have the religious or ideological orientations of these utopian communities that arose in the nineteenth century and early twentieth century. They are not based on communal ownership of property, or the eccentric village socialism of the Fourier or Owen communities, or Transcendentalism or other religions. However, echoes of these previous communities can be found in the idealism, search for purpose, safe harbor, and fellowship of the autism-focused communities.