When autism comes of age

It’s hard to guess what’s behind the pretty, modern-looking gate on Fifth Street West just north of Spain Street. A vast estate? A boutique hotel? An upscale apartment complex?

Two years after opening, most Sonomans are now familiar with Sweetwater Spectrum and have shown a warm welcome to its residents. As the first-of-its-kind residential community for adults with autism, the project has received national acclaim and is viewed as a model for similar projects cropping up across the country.

It’s been more than two decades since the rate of autism diagnoses began its eyebrow-raising climb – and with that generation of children on the autism spectrum now entering adulthood, adult autism housing is an idea whose time has, literally, come.

“Autistic children almost always outlive their parents,” says Deirdre Sheerin, executive director at Sweetwater Spectrum. “Yet, few parents have good options when that time approaches.”

As many as half a million children with autism will age out of the school-based support system (which ends at age 22) and enter young adulthood in the coming years, yet there are only a handful of residential options designed with them in mind. “Our founders felt that this was a vastly underserved population,“ says Sheerin. “Their goal was not only to solve their own immediate need for their own children, but to create a model that could be replicated elsewhere.”

Walking in from Fifth Street, visitors pass the four single-story, four-bedroom houses, a year-round therapy pool and hot tub. The community center houses an exercise room, community kitchen and gathering space. Tucked at the back of the property is a one-acre organic community garden, a chicken coop and a greenhouse.

The concept of “autism architecture” is a new one, but the grounds were designed specifically for these residents. Walkways are wide so no one feels crowded, design elements are repeated for familiarity and the property features uncluttered sight lines to lessen surprises.

The 3,250-square-foot houses are designed to be identical and feature sound-proof walls, subdued colors, durable materials and simple furnishings. Attention was paid to minimizing visual stimulation, ambient sounds, lighting and odors. Residents choose who they want to live with, and the houses have been designed to eventually allow for couples.

Visitors are surprised to see that Sweetwater is more of an apartment complex than a dorm, group home or treatment facility. Residents are truly independent – they pay rent, cook their own food, invite friends over, and come and go as they please. Families sign a lease and contract for care, whether it is 24/7 or a few hours a week, through the North Bay Regional Center, a state-funded government agency. Sweetwater provides no care itself.

But in her role as Sweetwater’s enrichment-activity director and volunteer coordinator, Suzanne Phillips is tackling the perhaps oxymoronic challenge of building a autistic community. It has been a process of trial and error. “No one showed up for anything in the beginning. Some program choices I thought would be popular just weren’t, and so we adapt. I know our residents now and can shape what we offer to their interests. And they are all much more social now.” The Sweetwater staff believes that their drive for connection – a quality not always strong in people with autism – is underestimated.

Perhaps most popular with residents is the garden. Garden director Rachel Kohn Obut has run the garden since day one, but her vision has also shifted over time. “Some hate getting their hands dirty, others enjoy watering the plants, some enjoy the chickens most of all,” she says. “Even the garden design is evolving as we’ve found that raised beds with wide walkways are much more appealing.”

Sweetwater’s West Spain Street farm stand, staffed by residents and volunteers, opens on June 20. The money earned from the stand (and micro-greens sold to local restaurants throughout the year) is reinvested in the garden.

Sweetwater residents volunteer around town and dozens of locals volunteer at Sweetwater. Two Sonoma Valley High School students are currently doing their senior project there. A few Sweetwater residents have volunteer jobs in town and Sheerin hopes that number increases.

With two years under her belt, Sheerin is most proud of the role Sweetwater plays in the community. “We aren’t ‘this’ or ‘that,’ we are simply your neighbors,” says Sheerin. “Most days you will see our residents all over town. We have found the community to be very welcoming.”

While Sonoma is now ”home” to all of its residents, only Maris Buesser, 24, grew up in the Valley. Buesser attended Dunbar Elementary, Altimira Middle and Sonoma Valley High. She has lived at Sweetwater since 2013 and today she is enrolled in a new career certificate program for high-functioning autistic students at Santa Rosa Junior College. She volunteers at Becoming Independent, and has performed with both the Sonoma Valley Choral and the Hometown Band for years.

“We used to lay awake at night and worry about where Maris would live as an adult,” said her mother, Stephanie Ozer. “We are thrilled and just so grateful that at Sweetwater she continues to be part of the Sonoma community. It is so comforting be ‘in this together’ with the other Sweetwater families and the staff.”

There is a perception that a solution like Sweetwater is only for the very wealthy. While families do pay around $40,000 a year, the costs are covered partially by Social Security Insurance, and about a quarter of the residents receive a discount on their rent. Sweetwater is a nonprofit and it runs a lean operation with fewer than four full-time employees. Its board is largely comprised of individuals from the community, including Chief of Police Bret Sackett.

As you might expect with any completely new venture, Sheerin and the board spend a lot of time thinking about what they should have done, or will do, differently. “We’re learning from our mistakes and adjusting. We’re eager to share our experiences with others to shorten their learning curve.”

Today, similar facilities are being planned in Cape Cod, Phoenix, Minnesota and New Jersey. According to Sheerin, these initiatives are almost always being driven by families desperate for choices. Hundreds of people tour the property each year and Sweetwater is developing a resource bank to help families trying to launch similar communities. “Visitors worry that they can’t raise the money necessary for such a gorgeous facility,” says Sheerin. “But it is the culture of Sweetwater that makes it work, not the real estate.”

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Autism spectrum disorder (ASD) is the fastest growing developmental disability in the United States,

• Currently, 1 in 68 American children are diagnosed as being on the autism spectrum–a ten-fold increase in prevalence in 40 years.

• In 2013, all autism-disorder subtypes were officially merged into one umbrella diagnosis.

• The most obvious signs of autism tend to emerge between 2 and 3 years of age.

• Autism is four to five times more common among boys than girls. An estimated 1 out of 42 boys and 1 in 189 girls are diagnosed with autism in the U.S.

• Improved diagnosis and environmental influences are suggested as the two reasons for the increase

• About 40 percent of those on the spectrum have average to above average intellectual abilities.

• About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.

• More than 80,000 adults across the country are on waiting lists for residential autism facilities, with waiting periods as long as 8 to 10 years.

–Source: Autism Speaks and the Centers for Disease Control

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To learn more about autism, visit autismspeaks.org

To learn more about the Sweetwater Spectrum facility, visit sweetwaterspectrum.org.