The article is good, but the story really hits home when you read the comments.
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| Peace, Purpose and a Pool: Sweetwater Spectrum, a California residence for autistic adults, hopes to become a model for like-minded experiments across the country. |
New York Times Published: October 9, 2013 71 Comments
The Architecture of Autism
By MICHAEL TORTORELLO
SONOMA, Calif. — Here is a truth about children with autism: they grow up to become adults with autism. Advocates estimate that over the next decade some 500,000 such individuals will come of age in the United States. http://www.nytimes.com/2013/10/10/garden/the-architecture-of-autism.html?pagewanted=1&_r=2&ref=garden&
No one can say for sure what adulthood will hold for them. To start, where will everyone live and work? A 2008 Easter Seals study found that 79 percent of young adults with autism spectrum disorders continue to reside with their parents. A solid majority of them have never looked for a job.
And yet the life expectancy of people with autism is more or less average. Here is another truth, then, about children with autism: they can’t stay at home forever.
This realization — as obvious as it is worrying — has recently stirred the beginnings of a response from researchers, architects and, not least, parents. In 2009, a pair of academics, Kim Steele and Sherry Ahrentzen, collaborated on “Advancing Full Spectrum Housing,” a comprehensive design guideline for housing adults with autism. (An expanded book on the topic is scheduled to come out next year.)
Perhaps the first development to closely follow their template is Sweetwater Spectrum, a residence for 16 adults whose abilities and disabilities span the full range of autism. The innovative $10.4 million project opened in January in the heart of California wine country, and its founding families and board hope to make Sweetwater a model for like-minded experiments across the country.
“You hear about different organizations planning to do these things,” said Dr. Ahrentzen, a professor in the Shimberg Center for Housing Studies at the University of Florida, in Gainesville. But “it takes time to get all these different funding sources in place.”
Ms. Steele said: “Did it become fashionable? All of a sudden there are a lot more.”
The pair ran off a list of new and prospective housing projects on Cape Cod and in the Catskills, Phoenix and suburban Minnesota. One of the most promising efforts, Dr. Ahrentzen said, is Airmount Woods, in Ramsey, N.J., which will welcome tenants in November.
But it would be hard for any of these campuses to look as “visually stunning as Sweetwater on the outside,” Ms. Steele said, with its 3,250-square-foot, four-bedroom, five-bathroom houses near a picturesque downtown.
It’s easy to plan a pleasant day at Sweetwater. Start off the morning with 30 minutes on the elliptical trainer in the exercise room. For breakfast, how about collecting a few fresh eggs from the chicken coop to cook in the community kitchen? Sow a tray of tomato seeds in the expansive greenhouse, shoot a few baskets on the outdoor hoop. And if it’s Friday, why not drop by activity night in the social hall?
These amenities are central to the enterprise, said Sweetwater’s chief executive and executive director, Deirdre Sheerin, 53. The public image of living with autism is one of lethargy and social isolation, she said. Picture someone “sitting on a Barcalounger with a video game, eating weird foods.” By contrast, everything about Sweetwater exists to inspire a “life with purpose.”
To start, residents have chosen to move here; they have chosen their housemates, too. Similarly, families contract for their own care, be it round-the-clock support or drop-in help. In one sense, Ms. Sheerin said, Sweetwater is a glorified landlord: each tenant signs a 12-month lease and pays rent ($650) and an association fee ($2,600) every month.
At the same time, Sweetwater’s mission statement lays out some ambitious principles. Residents will be able to age in place. The community should “accommodate a broad financial spectrum,” subsidizing residency for a quarter of its tenants. And attendants (who are not Sweetwater employees) should be offered incentives to encourage stable, long-term care relationships.
George Uberti, a 28-year-old personal attendant, likes the idea of helping clients in a community that belongs to them. “But the real difference is the resources,” he said. “We have a pool here that’s just outside. We have a library. We have a farm. Normally, a big part of supportive living is we have to manage behaviors within certain settings. We have to ride the bus.”
Sweetwater, by intention, will be a kind of laboratory to work out ideas that range from the mundane to the profound. Will nontoxic building materials improve the daily experience for a population that often reacts strongly to sensory irritants? Will the residents of a more responsive building require less expensive care?
Perhaps Sweetwater will prove that an oversize kitchen counter can encourage autistic adults to cook and dine together, forming friendships and community. But even that ideal is complicated. As more than one Sweetwater parent has wondered aloud, what does “friendship” or “community” mean to someone with autism?
•
HERE IS WHAT it looked like on a Saturday evening at the end of summer, when two dozen residents, families and caregivers gathered outside the rec center for a cookout.
Ashley Pease, 25, was giggling and hopping to the Xbox game “Dance Central.” Her party outfit included a black bridle helmet and a stuffed elephant. (As Mr. Uberti said: “Everybody likes to dance in their own time. But no one knocks it back the way Ashley does.”)
John Edmonston, 25, was drinking a juice box on the floor, although this was hard to see. He had positioned a giant beanbag over his head and trunk to promote a sense of calm.
The mustering of residents was no small accomplishment in itself, Mr. Uberti said. “We tried to do one of these when we first moved in, and it did not go well. We could barely talk the residents into coming into the kitchen.”
Indeed, Ms. Pease’s housemate, Chris Jackson, had shifted from the edge of “Funkytown” to the kitchen, then to the patio, before retreating across the courtyard. He had barely checked in with his mother, Patty Jackson, 54, which worried her not a bit. Chris is hardly the only 22-year-old in America to ignore his mom in public. Plus, she remembered the alternative.
Before moving into Sweetwater, he spent 10 years at a residential school in Boston. Every month, his parents would make a three-day cross-country trek from their home outside San Francisco. Leaving at the end of those visits was wrenching.
As his father, Mark Jackson, 56, recalled the next day: “It was miserable.” His son is nonverbal, and when he is upset, his behaviors can be challenging. He sometimes hits his caregivers; once or twice, he has bitten them. Even so, Mr. Jackson added: “These guys are vulnerable. They can’t really report if they’re unhappy.”
Sweetwater is an open campus, and a host of attendants and parents are watchful all the time. “Now we take him into town for ice cream,” Mr. Jackson said, “kiss him on the cheek and say, ‘I’ll see you next week.’ ”
Ms. Jackson had prepared a bag of snacks for her son and another for Mr. Edmonston, whenever he emerged from his beanbag shelter. “Johnny is gluten-free,” she said. “I brought some gluten-free brownies.”
It was parents who founded Sweetwater, and the place has taken the shape of what Mr. Jackson called “an extended family.” Maris Buesser was interrogating her housemate’s mother about the car she had parked in the lot. (“Does the Mercedes CLK have buttons on the steering wheel?”) Nearby, Ms. Buesser’s mother was trying to arrange a duet between her daughter, who plays flute, and another resident, Christopher Kite, who plays piano. Soon, Ms. Buesser, 23, and Mr. Kite, 28, were discussing Mercedes-Benzes.
Ms. Buesser’s mother, Stephanie Ozer, 57, looked on approvingly. “That may not sound like much,” she said later. “But that type of interaction and back and forth? That is something I’ve dreamed of.”
What needs to be said here is how limited the dreams have been for parents after their autistic children age-out of the school-based support system at 22. Ms. Buesser was lucky to find a new program at Santa Rosa Junior College called College to Career.
But the notion of sending her to a distant group home held no appeal, said her stepfather, David Schoenbach. Ms. Buesser attended Sonoma Valley High School and she performs with the Sonoma Hometown Band. “She knows many more people in town than I do,” said Mr. Schoenbach, 61. “She walks down the street and people say ‘hi’ to her.”
Ms. Ozer, her mother, said, “We would fantasize that maybe with a few families we could get together and buy a house in Sonoma and set up our own supportive-living model.”
But when you are raising a child with autism, she said, the hassle of the moment often distracts from the crisis on the horizon. “I just remember we would lie in bed at night looking up at the ceiling and say, ‘What are we going to do?’ ”
Ms. Buesser, who was listening from across the room, said, “I’m staying here for life, right, boss?” And then she asked, “Are there bats here?”
Her housemates are unfazed by such questions, Mr. Schoenbach said. “They’re definitely her tribe,” he said. “And she recognizes it and is delighted to be around other people with autism.”
As the cookout wound down, Ms. Buesser wondered aloud, “What would a black widow spider do if I touched his eyes?”
•
ONE OF THE NEW design goals for supportive living is that the buildings shouldn’t look like supportive living. That said, the project’s lead architect, Marsha Maytum, from the San Francisco firm Leddy Maytum Stacy Architects, drew extensively from the Steele and Ahrentzen standards. Many of her design decisions were practical ones, like specifying extra-durable, high-impact wall finishes and replaceable carpet tiles.
Also, there is a floor drain in every bathroom. As Ms. Maytum explained, “Water can be a really interesting activity for people with autism.”
Safety and security were other concerns. The kitchens use induction cooktops to limit the possibility of burns. And while the perimeter fence is slotted (Sweetwater is not a fortress against the neighborhood), solid planks span the bottom few feet. Residents are free to walk out the front gate, but it’s probably best that they not treat the fence like a ladder.
A bigger design challenge was to see a house through the eyes of an autistic client. For example, the layout of all four dwellings is identical: a neighbor’s place should feel like home. And multiple seating options encourage an individual to be near the action without necessarily plunging into the fray.
Another way of limiting noise annoyance was to place pairs of bedrooms on opposite sides of the house, instead of in a dormitory-style row. Ms. Maytum had an additional consideration here, too. “What happens when people fall in love as the years go by?” she said. “These private spaces also provide for the possibility for a couple to have their own wing.”
Ultimately, she doesn’t really know which, if any, of these strategies will make a significant difference. And given the newness of autism architecture, neither does anyone else. As Ms. Sheerin, Sweetwater’s executive director, said, “I often liken it to sailing a ship while we’re still building it.”
Returning to the finished site after a few months away, Ms. Maytum expressed an eagerness to see how the residents had started to personalize and occupy their spaces. But at this point, it is still hard to say. For much of the day, Sweetwater can appear almost deserted, like an office park on a Sunday. Most of the residents depart around 8:30 a.m. for school or life-skills training. When they return, they often withdraw to their rooms.
Dr. Ahrentzen, who visited the nearly three-acre site during construction, said: “It’s very spacious for 16 people. If it was half the size, it might not look as void during the daytime.”
More than an acre has been given over to the organic farm, which a solitary staff member, Rachel Kohn Obut, has filled with thriving row crops, a u-pick garden and the beginnings of an orchard. The idea is for the residents to participate in a market operation, perhaps as a vocational opportunity.
Over the summer, however, the farm did not prove a popular destination. “They didn’t seem to like getting their hands dirty,” said Ms. Kohn Obut, 30. “So it’s all gloves, all the time.”
In truth, many of the other common areas have a vacant feeling as well. On Sunday evening, Christopher Kite returned from an overnight visit with his sister, Nicole, to find his home empty. Most of the time, he said, “It’s like I’m in my own 3,250-square-foot house.”
The living room furniture looked as if it had just been delivered. The shelves contained a single book, an early John Cheever novel that no one claimed. Standing in the kitchen, his sister said, “I don’t get the sense that anyone uses this space. I think Chris is the only one who cooks.”
Mr. Kite attends college courses in Santa Rosa and interns a few mornings a week at Ramekins, a local inn and culinary school. And he expresses gratitude for the opportunity to exercise at Sweetwater (he closely tallies his laps and miles), and to establish his independence. Back in the family home, Ms. Kite said, “I felt he had been in a stagnant place for a while.”
But sometimes it seems to Mr. Kite that there are too many hours in the day. “It’s frustrating because I’m capable of having an intelligent conversation with someone,” he said. “And that’s not possible here.”
What about Ms. Buesser, the flute player he had chatted up at the cookout? “She’s pretty much obsessed with brands of cars,” he said. “I can’t get her to talk about anything else.”
At some point, he added, “we’ve covered everything we can about Mercedes CLKs and SLKs, and our opinions differ on those two models.”
The comedy of the situation was not lost on him. “I prefer the SLK convertible,” he said. “And she prefers the CLK. She likes the more expensive Mercedes!”
That feeling of isolation continued into the fall, Ms. Kite said recently over the phone. A few weeks ago, he spent a weekend back home with his mother and decided not to return to Sweetwater.
Sweetwater, it seems, is an experiment not just for the community but for each individual. Mr. Kite still needs to retrieve his furniture.
•
SINCE THE FIRST RESIDENT, Chris Jackson, moved in at the start of the year, “literally hundreds of inquiries about Sweetwater Spectrum” have piled up in the office, said Ms. Sheerin, the executive director. More than 30 applications are pending for the remaining three bedrooms.
She also hears weekly from parents hoping to develop their own versions of Sweetwater. Fortunately, one of the group’s stated goals is to “create and foster a model that can be replicated nationwide.”
Mark Jackson recently started a consulting company to lead others through the process, having guided the building of Sweetwater for several years as an almost full-time volunteer. From that experience, he now tells parents, “It takes three things: time, money and knowledge.”
It’s that middle item, the cost, that presents the most obvious barrier. A couple of scholarships aside, families pay $39,000 a year for a child to live at Sweetwater. That expense, said Ms. Steele, the researcher, “will preclude people who don’t have a trust fund or wealthy parents from living there.”
Ms. Maytum, the architect, resists the notion that Sweetwater is somehow extravagant. Building anywhere in the vicinity of the Bay Area is expensive: the land alone cost $1.45 million. “This is standard wood-frame construction,” she said. “And that can be done anywhere. You don’t need a swimming pool to make this successful.”
Or maybe that’s exactly what you need. A little before 4 o’clock on Sunday afternoon, Ms. Pease and Mr. Jackson migrated from their shared home to the pool, as they do most warm afternoons. An attendant, D. J. Banta, 21, flung a water polo ball into the middle. Mr. Jackson splashed Ms. Pease, and then Ms. Pease splashed Mr. Jackson, and then Mr. Jackson tossed the ball, and Ms. Pease tossed the ball, and the game went on in this fashion for a good half-hour.
Mr. Banta said, “They don’t normally get along — except in the pool.”
Ms. Pease skipped the ball onto the pool deck, and Mr. Jackson took the halftime break to plunge below the water. When he surfaced, his expression seemed not just unbothered, but serene.
Mr. Jackson would never say how he perceives the entire experiment that is Sweetwater. But his feelings in the moment were as plain as his face: Here comes the ball!
Bringing a Child Closer to Home
Sammy Rosenblum is a 30-year-old who enjoys swimming, swing sets, “The Muppet Movie” and karaoke. But most of all, said his father, Marc Rosenblum, “he likes being home.”
The catch is that Sammy lives in a facility for adults with autism 135 miles from his family’s place in Bergen County, N.J. “The round trip to take him home and take him back becomes 500 miles,” said Mr. Rosenblum, 56.
Sammy’s autism is profound. He can’t tell time or read the calendar, said his mother, Terri Rosenblum. “But he has some sense: he feels like he should be coming home,” Ms. Rosenblum, 53, said. “The longer the spacing between the visits, the worse his behaviors would become.”
That is about to change. In about a month, Sammy will be moving into Airmount Woods, a new eight-unit residence developed by Bergen County’s United Way and operated by the service agency New Horizons in Autism. “It’s going to be about 10 miles from our front door,” Mr. Rosenblum said. “The family will become an integral part of his life.”
The twin four-bedroom houses will use some of the latest concepts in building for autism. But the real innovation may be the way it promotes special-needs housing as a community asset. That term is not just a stock phrase. Airmount Woods belongs to a nonprofit group called Ramsey Housing Inc., formed by the Borough of Ramsey. The mayor, Christopher Botta, sits on the board, and he dropped by on a recent morning to show off the project. Almost every one of his constituents knows someone with autism, the second-term Republican mayor said. This isn’t housing for strangers.
Ramsey already owned the 1.6-acre site and was sitting on an affordable-housing trust fund of more than $2 million (amassed through compulsory surcharges). “It’s a good use for funds we’ve collected,” Mr. Botta, 46, said. But while good politics and good intentions may have laid the foundation, the $2.8 million project wouldn’t exist without the local United Way’s president, Tom Toronto, and the Madeline Corporation, a nonprofit developer.
Since 2000, the partnership has created 110 beds, more than half for supportive living. And projects in the pipeline will create residences for 24 more adults with autism. Mr. Toronto said, “We’d like to have a home for everyone.” They have a ways to go: New Jersey’s last housing wait-list for the developmentally disabled was 8,000 names long.
Mr. Toronto has shown a knack for marshaling millions of dollars from state and government programs. (The United Way also put $200,000 into Airmount Woods.) But the greater task lay in convincing boroughs to spend those funds in their well-mowed backyards. Ramsey, the mayor said, is a middle- and upper-middle-class community where typical houses sell for $400,000 to $500,000.
The key, Mr. Toronto said, was that “we were able to show that affordable housing didn’t look like affordable housing.” He points to Crescent Commons, a supportive-living home in Allendale, where “we had people coming in saying, ‘When’s the sales office open?’ ”
At Airmount Woods, the architect, James Virgona, 45, proposed an assertively modern design. But “we modified it to match the surroundings of the town,” he said.
The novel aspect exists on the inside, which has been planned for the safety and comfort of residents. It was a challenge, Mr. Virgona said, to maintain sight lines for caregivers while separating and noise-proofing bedrooms to minimize sensory stressors. And while architects prefer natural light, the autistic client is seldom fond of glare and shadow.
Ultimately, Mr. Virgona imagines that families will customize the 400-square-foot suites. When Sammy Rosenblum last lived with his parents, his mother painted “Sesame Street” characters on the wall. But that was 20 years ago. “It’s not age-appropriate here, maybe,” she said. Now she is thinking about a rain-forest mural. Ms. Rosenblum will know if Sammy approves. He’ll be living so close to home.
- Pam Shira Fleetman
- Acton MA
This article states, for children who will become adults with autism: "No one can say for sure what adulthood will hold for them."
This is not true.
Despite public perception, there have always been adults with Asperger's (high-functioning autism). Until recently, these "Aspies" were either given inaccurate diagnoses (e.g., bipolar disorder) or simply regarded as "difficult"or "weird." As a 66-year-old with Asperger's, I am all too aware of this.
As someone active in the Boston-area Asperger's community, I can tell you what adulthood "has held" for older Aspies.
Most of them, despite repeated attempts at getting and holding jobs, are unemployed. Even before the recession, 87% of adults with Asperger's were unemployed. The few Aspies who are successfully employed have high-level software or mathematical skills (or found a special niche - - e.g., Temple Grandin).
Therefore, most older Aspies live marginal lives. They live on government benefits (SSI, food stamps, and, if lucky, subsidized housing) and thus at a bare subsistence level. (No dental or vision benefits, and no "treats" such as a movie or sporting event.)
Despite these problems, most Aspies are highly capable adults. They have higher than average intelligence and very much want to work. Their employment issues stem mostly from social communication problems and sensory overload. If employers would be more understanding, most Aspies could work. (No more room, but there are some efforts in this direction.)- Z
- Ny, ny
If the purpose of this housing is to provide community and real world experiences so these people can live without their parents, then why not just provide them the treatment and skills to do that? isn't it obvious that with the exponential increase in diagnosis that this type of housing will never meet the need?- Ivermarkt
- Pasadena
What a revolutionary concept: Create a place for those with autism to live that is comfortable, convenient, accessible and humane.
It took someone this long to realize that autistic people are just as human as everyone else an that maybe feel that same way about things as the rest of us?
Maybe, that is, for affluent autistic people and their families.
As far as autistic individuals and their families who are less than affluent, apparently the older Dickensian model still applies, because their feelings must be different as not to notice.
As on whose been in or around special education for the last 40 years, I find this article extremely elitist and its title disingenuous with regard to autism as a whole.
I suppose the families with autistic members who ponied the high price tag to build this fancy place, did so with the best intentions them - and themselves - but I hardly see this as any kind of template for general consumption.
It's no different than anything else that serve the disabled. Like here in LA: Westside and affluent special ed schools reflect the means of where they are. Here on the Eastside, the schools reflect the same, only in the opposite direction.
This is no different than the way it's always been, and will probably continue to remain the same as long as society remains divided along economic lines, as it is now. So good for the lucky ones who get to live at a place like the one depicted above.- Maurine Meleck
- North Augusta, SC
It's interesting that you placed this article in the home and garden section. Autism is not a rose garden.
You ask where all these young adults should go when done with school. Why doesn't someone ask all those naysayers that claim there has been no increase and they can tell you where all the other adults with autism have gone after school.
This facility could house only .00000001 percent of all those suffering. from autism and they have to have lots of money too. This is rather unrealistic.
Maurine Meleck, SC
grandmother to 1 in 31)vaccine injured with immune dysregulation)- Anne Dachel
- Wisconsin
This has been the exponential increase in autism:
1980: 1 in 10,000
1995: 1 in 500
2001: 1 in 250
2004: 1 in 166
2007: 1 in 150
2009: 1 in 110
2012: 1 in 88
2013: 1 in 50
Back in 1994, the definition of autism was expanded to include less severe forms of the disorder and the rate soared--and it's been increasing ever since. Mainstream medicine and health officials have shown almost no interest in autism. Officially, it's never even been called A CRISIS. Despite the fact that we're often told there's no known cause or cure for autism, no one is ever really worried about what autism is doing to our kids. With each dramatic increase in the rate, we were told it was not a REAL INCREASE--just more better diagnosing by doctors of a disorder that's always been around.
The truth is, autism is an epidemic. A once rare disorder is now so common that everyone knows someone with an autistic child and no official can tell us why. The cause is extremely controversial and the only response from authorities has been to try and convince us that autism isn't a problem. Maybe when the COST OF AUTISM simply buries us, we'll honestly address the CAUSE OF AUTISM.
Anne Dachel, Media editor: Age of Autism- LifeLoveHealth
- San Francisco
OK, Anne, don't keep us in the dark; rather, what are the 1-2-3 causes of autism, in your estimation, and how do those differ, if at all, from Jenny McCarthy's ideas, please?
Christopher Springmann
Executive Producer
Body Language on RadioMD
- anne
- denver
the comment from parents: " what does “friendship” or “community” mean to someone with autism? " is so ignorant it is startling. I am the parent of a 30 year old young man, non verbal, who loves nothing more than a good party, friends, eating together, community. He may show it differently, we joke that his visits with friends is so "peripheral", but it doesn't mean it doesn't matter less to him. These parents need to wake up and realize that just because a person has a disability, including autism, doesn't meant that they don't basically want the same things we all want, love, friendship, community, a place to belong and contribute, an opportunity to work. And from an architectural standpoint, it is always the job of the architect to meet the needs of its client, no matter what the need, so there is nothing earthshattering there either. To me it is more the commercial exploitation of the autism phenomena.- chesbeau
- Long Beach CA
Cost is always relative. San Francisco real estate is a premium, and most everything else here makes me reach deeper for most goods and services in the Golden State. My wife is a Special Education teacher with a student body of “moderate to severe” challenged children. Many of these kids will not make progress often due to circumstances beyond their control: apathy or lack of parental involvement in their education.
I consider this program a worthwhile opportunity for our often-ostracized members with special-needs. Unfortunately, the sharp, expressed cynicism and lack of humanity further stigmatizes this population while presenting significant barriers to these and other resources for those fortunate enough to be able to pursue a chance at a satisfying life afforded to them by noteworthy programs like Sweetwater.- Anne Dachel
- Wisconsin
There's one very important question that should be in everyone's mind as they read this article: WHY ARE WE HAVING TO COME UP WITH RESIDENTIAL CARE FOR AUTISTIC YOUNG ADULTS?
Why can't young adults go where autistic adults have always gone?
Why can't anyone show us the 40, 60 and 80 year olds out there who are on the autism spectrum---the middle aged and elderly with the same symptoms we see in our children?
Why is the rate ONLY BASED ON STUDIES OF CHILDREN?
Anne Dachel, Media editor: Age of Autism- Lynn
- San Diego
Why aren't these residential models attached to, and part of, our colleges and universities across America ?- Dadvocate
- USA
Because the old school poicy makers view anything they personally don't like as an "institutional setting" and won't fund it, ESPECIALLY a residential model attached (or even nearby) a college or university, Unfotunately, they intentionally conflate multi hundred bed State owned historic Institutional nightmares like Willowbrook with any innovateve model designed for more than 3 or so people. Fortuanately, the latest choice limiting attempt, Health and Human Services initiative to define the word "community" in a tortured, artificially narrow way in order to defund models they don't like, is getting a ton of pushback from State administrators, elected officials, thoughtful independent advocacy groups, critical service providers, labor organizatons representing folks with critical skills and training, and thousands of individuals with disabiliies and their families. Let's hope that the anti innovationa snd anti choice folks take the hint and ride off into the sunset. The important and essential deinstitutionalization battle against involuntary segregation many of these same folks fought and won ended a long time ago. Some apparently haven't gotten the news yet.- R Stein
- Connecticut
That's one of the last things to wish for! Colleges today operate as profit centers in broad outline, and worse, they are well-positioned to seek and absorb a great percentage of any federal (i.e. public) monies that can be had, as they are properly credentialed and can use the term 'research' for nearly anything. They are also very well practiced in soliciting and getting bequests, and do not have abundant supplies of people to act as relatively low-wage caretakers. As a scientist, I think I can, off the cuff, outline those grant applications...
- NYer
- New York
MICHAEL TORTORELLO: First, thank you for this piece, the essence of which brings into focus the fact that people on the autism spectrum have a range of sensibilities that may vary and this architecture hopes to address. I would recommend as a follow up piece the work being done placing developmentally disabled and those on the autism spectrum into 'supported housing' situations which more fully integrate people into the community often with lower costs and a larger variety of full life options.- Mike
- Texas
10.4 million dollars to provide a facility for 16 adults to live? Then, on top of that, $39,000/year to live there.... It appears to me that this wonderful model will only be able to serve a small percentage of the autism/disability population. These models exist in multiple locations in a great deal of variety, but they all share the same thing in common; the only families that can participate have the financial resources to pay for college tuition every year for the rest of their loved ones' life.- A. Wright
- Colorado
The Camphill model, based on the philosophies of Rudolph Steiner, has been helping adults with developmental disabilities since the 1940's.http://www.camphill.org. These communities are a godsend to those faced with the long-term care of loved ones who can't quite care for themselves. You do not have to be wealthy to help your family member, either.
My sister Katie lived at Camphill Kimberton (in Pennsylvania) for 25 rich and fulfilling years before she died in 2009; the community is a mix of adults with disabilities and volunteers living on a 400 acre biodynamic farm. Yes: chickens, cows, farm stands, herb gardens, a pool...all in a natural environment. She had what she called Asparagus Syndrome, and could never have lived on her own. At Kimberton she participated completely in the responsibilities of an adult and a community member, had a great deal of independence (or rather, interdependence), and was well-loved and cared for.
I cannot properly express how grateful I was to have found Camphill.- Terezinha
- San Francsico,CA
Thank you for this delightful story of Katie. What resonates particularly with me is that Camphill Kimberton comprises a mix of adults with disabilities and volunteers. This sounds far more like normalizing her life, than other facilities that focus on people with disabilities living together and away from the world.- bhibsen
- New York
Yes, Camp Hill is an excellent model, named after Camp Hill, Pennsylvania, where the original community was, and still is, located. However, it is not a model that works for all people with autism or developmental disabilities and it does not really integrate people into their wider communities, rather creating a "niche" community in which people are safe and cared for, but largely separate from the surrounding community. This is not the model that the Supreme Court had in mind when they ruled on Olmstead, however, for some, it is the choice that works best for them, as long as it is actually their choice and not that of their overwhelmed family members.
- theAutismDoctor
- Fort Lauderdale
First, not ALL children with autism carry that diagnosis for life, and many go on to an 'optimal outcome', meaning that they have the same opportunities as neuro-typical children. My medical practice has been able to recover many children who present at <5years br="" old.="">Second, many neuro-typical children today end up living in their parents house when they become adults.
Third, while I applaud your effort to help families recognize that there is hope for some type of independence, there is a certain amount of "Rain Man" mentality in your article that is simply not true.- Cay
- Brooklyn, NY
I really don't think that you can say that an autistic child being cared for by their parents until the day those parents pass away is comparable to a child with no disabilities returning home after college. Caring for an autistic adult is no small task.
Also, there is little solid data on the number of children who actually "recover" from Autism and lose the ASD diagnosis. Yes, it is essential that autism is caught early for treatments to be most effective, particularly with language skills. While that is great that your practice has been able to help so many families, the idea that so many of your patients have just recovered is a bit suspect to me. Difficulties can certainly get less severe with age and good support, but you are implying that many children do recover and place off of the spectrum, and I've seen little data out there to support that.
- pragmat
- California
Maria Fitzgerald makes a wise suggestion; we need to look to Canada or Europe for some models. In uncontrolled teaparty America these could become centers for financial exploitation, as Frontline on Assisted Living showed us. We need to do better. What happens when families cannot afford this care?- eliahubenyakov
- NM
Sorry, but Sweetwater and places like it are essentially just attractive private-pay institutions. They may do good work with the residents, and the residents may be comfortable living there, but the fact is that they are segregating people who have autism. You can put lipstick on a pig, but…
For less than $39,000 a year (Sweetwater's $650 monthly rent + "association fee" of $2,600 x 12), someone who has autism can probably employ a competent, full-time personal companion/aide for training, guidance and support in his/her home community.
The time is long past when people who are "different" should be separated from the rest of society.- NeilsDad
- Oregon
You are sadly mistaken. My son requires 24-hour care. At 8760 hours per year, $39,000 would pay $4,45 an hour. Where will you find "competent, full-time personal companions" at that price? In fact, the cost of his care exceeds $10,000 per month. $39,000 per year sounds like an incredible bargain to me, and the long waiting list at Sweetwater suggests I'm not the only one who thinks so. Decent, humane accomodations for autistic adults are hard to find at any price.- Dadvocate
- USA
Unfortunately, far too many "old school" disability advocates demonstrate an unbridled zeal to totally control the funding and limit the residential and lifestyle choices of people with autism and other developmental disabilities. It galls them that people may be able to voluntarily choose and get funding for the campus or intentional communities like Sweetwater that they abhor, over their ideologically based "one size fits all" solutions (solutions that some of these same less than independent advocacy groups depend on for funding!.) A continuum of choices, from independent living to congregate care and everything in between, should be the menu that people with autism and developmental disabilities should be able to select from, if we are to have truly person-centric policy.. Individual choice, even if it is to live in a more structured setting, should be respected and appropriately funded. Too many entrenched policy makers exhibit a shocking lack of understanding on this point. They just don't get that not everyone wants or thrives in an urban or suburban (and often solitary or parental home bound) community "solution". Choice, and the notion that no one should be forced out of (or deprived of the choice to select) a more structured setting if they personally (or in conjunciton with their legal guardians) chose is a key element of Olmstead, notwithstanding the cherry picking that some advocates do with that landmark decision. .
- Ivermarkt
- Pasadena
"It’s that middle item, the cost, that presents the most obvious barrier. A couple of scholarships aside, families pay $39,000 a year for a child to live at Sweetwater."
That's a good one!
The place sounds like the Autistic equivalent of the Ivy League. I doubt if anything like that's going to be coming anytime soon for the autistic kids I work with, here in East Los Angeles.
Maybe a less costly, somewhat more spicy version; maybe called Agua Caliente, and with a lot fewer high-end amenities.- Debbie
- NY
Go right ahead!!! If you haver some real ideas, set them forth.
- chum
- NJ
A building does not a community make, no matter how high end or well designed.- Maria Fitzgerald
- Bridgeport, CT
I live and work in a L'Arche community (www.larche.org), with people with developmental disabilities (sometimes including autism), as well as a couple other individuals who live and work here (without disability). I think something that would make this less costly and more sustainable would be to connect the house with live-in or live-nearby caregivers/attendants. L'Arche communities have been doing this since the first home in France in 1964.- ps
- Arizona
These are wealthy people creating a residential full-care facility for lifetime care of their own children to a standard they find comfortable. Nothing wrong with that and nothing new about that. . Nothing discussed here seems to come close to a real solution for any specific problem and certainly not for any large scale population. As has always been true, the parents benefit most and the wealthy benefit at all.- Pacifica
- Orange County, CA
“Sammy’s autism is profound. He can’t tell time or read the calendar, said his mother, Terri Rosenblum. ‘But he has some sense: he feels like he should be coming home, Ms. Rosenblum, 53, said. The longer the spacing between the visits, the worse his behaviors would become.”
Maybe what is missing is a sense that someone at the home actually loves the residents. They need a sense of belonging, of family, or community.
Why not include daily (therapeutic) community group meetings where residents, both nonverbal and verbal alike, can connect and relate on whatever level is meaningful to the individual?- Loreen
- California
I have long fantasied about building an apartment complex for high functioning disabled adults. In my family, we have two individuals, one with autism and one with mental delays, who are both capable of working and leading independent lives. However, it is the social aspect that is incredibly challenging. Living in a normal apartment building, it is hard to find typical adults who want to be friends. The housing complexes for the disabled tend to cater towards individuals with more profound disabilities and also do not really provide the socialization aspect.
What we need is an apartment building for high functioning adults with a few live-in aides who check in, help in an emergency, and plan social events, like pool parties or movie nights. My autistic relative can be loving, but needs the structure to socialize. My relative with mental delays would love to be with people 24/7 and is the life of the party, if only he can find a party!
Housing units for high functioning adults could really ease some of the burden and worry on their families. Maybe some of the money from agencies like Regional Center that go to aides could apply to the live-in aides?- Kaleberg
- port angeles, wa
This article inspires mixed feelings. The love and hope of the parents shine through, but in some ways Sweetwater seems more suited to their psychological needs than to those of their children. The garden is an example: visions of the residents planting seeds and tending vegetables turned out to be fantasies. The parents may have liked the idea of a garden, but their children hated to touch the soil. Similarly, the lead architect's statement that the design of the living quarters would provide privacy for residents in love with each other is contradicted by the words and behavior of the residents themselves, most of whom don't seem to want to interact with each other.
Sweetwater is a beautiful dream, but it has been built on some of the most expensive real estate in the nation, and it has expensive amenities that, while adding to its costs, may not be needed or enjoyed by the people for whom it was built. Is this a step forward for people with autism and for their families, or is this just a vanity project?- Leila
- Sacramento, CA
It's an interesting experiment. The parents were trying to do the best for their children. Maybe in the future some of the residents will enjoy working with the soil. Autistic people are not all the same, and it's important to offer a variety of possibilities for each different need.- R Stein
- Connecticut
Neither, just another warehouse.- bhibsen
- New York
I have to say, as someone who has worked for years with individuals with autism and developmental disabilities, that I was thrilled to read that this house had a pool. I know that it seems trivial, however, many individuals with autism and DD are very tactile and love to swim, and this is often the only exercise they really enjoy. I am not saying that this applies to all individuals with autism and DD, however, in my experience, swimming has always been a very popular activity.
That said, this is neither a novel nor sustainable model. The idea of universal design and design directly related to the needs of the individual has been around for decades.
This is clearly something that can only be sustained by very wealthy families. I too worry that these families have a pre-conceived idea of what equals a high quality of life for their children. That said, I think having a garden is a great idea, even if few actually tend it. You could open that chore up to teens looking for a service project and you provide fresh veggies for those living in the house and for the neighbors. That is the essence of community.
- Margaret Meyers
- Merion Station, PA
Sweetwater is running up against the spectrum of ability Autism represents. The services and facilities that suit a higher functioning kid are not going to suit a lower functioning kid. Having non-verbal kids and Aspie kids together is always tricky -- my own Autie is very aware of who is "high functioning" and who is "low functioning," and she is not interested in being associated with the kids who are more Autistic than she is.
I wish she was more accepting of kids who are more effected by their Autism, but she isn't. the same Autism that makes them resist getting their hands dirty, say rude things out loud, refuse to swim when it is bright outside, correct your language pedantically, seek isolation, and talk endlessly about their topic is the same mechanism that makes them intolerant of their fellow Auties.- Rose in PA
- Pennsylvania
My son, a senior in HS, is PDD-NOS. He's too high functioning to ever qualify for any type of government assistance but also I fear not quite able to live independently (he has a hard time understanding mone) but what struck me in your note is that he also has an intolerance of more handicapped individuals. My son is truly friendly and social at times, but he does NOT like being associated with some of the more severely impaired students in his public HS.
- Joseph M Macbeth
- New York
How depressing when a campus model like this for adults with autism makes the Times and offered as an innovation. In order for us to meet the adult needs (employment, social, housing, direct support) of the autism population is an important discussion. I understand the parent perspective, but how have we failed as a system when a campus model that has long been outdated becomes the next best thing…again?- jim
- VA.
Has anyone considered mixing communities of willing adult populations with autistic ones? Seems to me a lot of experience and know how is jettisoned by the concept of independence.Why not mix architecture with extended family?
Wow!!! It is nice and interesting experiment.The services and facilities that suit a higher functioning kid are not going to suit a lower functioning kid.
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