"When you wish upon a star... makes no difference who you are."

September 18, 2011 7:55 PM

Autistic and Seeking a Place in the World. Pulitzer Prize-winning New York Times reporter Amy Harmon spent a year observing a young man with autism named Justin Canha, who took part in a new kind of “transition to adulthood” program for special education students at Montclair High School in NJ. The experimental program was intended to ready him for an independent life as an adult and integrate him into the community.

The article includes additional media resources, including slideshows and several videos documenting short conversations with Mr. Canha.

Mr. Canha's art site. He was also the subject of a short film called "Sidecars." The director is currently working on a sequel called, "Don't be Interested."

posted by zarq (26 comments total)

Great article, thank you so much for posting!
posted by the young rope-rider at 8:43 PM on September 18, 2011 [3 favorites]

NYT article: People with autism, whose unusual behaviors are believed to stem from variations in early brain development, typically disappear from public view after they leave school. As few as one in 10 hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents.

Autistics are creative, wonderful people, and programs like Transition to Adulthood should be implemented nation-wide. Their talents currently go underutilized, and it would behoove society to help them help us. I am wary of efforts to "cure" autism. It seems to me that we should accept and celebrate their special gifts and perspectives. This looks like a step in the right direction.
posted by troll at 8:48 PM on September 18, 2011 [3 favorites]

troll, with respect, it is such a varied disorder and there are a significant number of people with autism who have problems that understanding and acceptance simply won't fix. Justin was not able to speak until he was around 10. The fact that he learned to speak so well is the product of a significant amount of time and effort put towards "curing" autism.

That is not even getting into basic physical safety issues--self-harm, disordered eating, and violent behavior that would be likely to get a violent response in return--these are all things I have seen in otherwise wonderful children with autism. They need help to change these behaviors, because all the acceptance in the world won't make them safe.

(Although I am never sure when people say "cure" exactly what they mean so we might be talking about two different things!)
posted by the young rope-rider at 8:58 PM on September 18, 2011 [10 favorites]

Thanks so much for posting this. As the father of a 7-year-old boy with autism, the "What will he do after he ages out of the school system" and "Who will take care of him after my wife and I pass on?" are frequent concerns, so articles like this are great, even if it is a reality I would sometimes like to avoid.
posted by The Gooch at 9:09 PM on September 18, 2011 [2 favorites]

"all the acceptance in the world won't make them safe."

No, but as the parent of an autistic child acceptance, or least understanding, would be more than I could hope for. I feel like I have so much to say on this issue but to be honest it's late and I'm sad enough already after reading the article. What will become of Andrew when he reaches adulthood is one of the, many, things that keeps me up at night. I can only hope there is some sort of program like this in place here when he reaches that age.
posted by MikeMc at 9:12 PM on September 18, 2011 [3 favorites]

This is a great article. I think if people with autism can be helped to be in work which uses their talents it is far better all around. People with disabling conditions can get into difficulties though, such as being taken advantage of or even hurt by criminals. I hope there will be a realization that lifelong help is needed. I am glad better interventions are availble now.
posted by Katjusa Roquette at 9:17 PM on September 18, 2011

I hope my comment didn't come across as dismissive of acceptance and understanding. I simply think that sometimes a false dichotomy is created between acceptance and treatment. It is my opinion that people with autism often benefit from both.
posted by the young rope-rider at 9:18 PM on September 18, 2011 [2 favorites]

You raise some good points, rope-rider. I suppose it would be useful to distinguish between "curing" and "accommodating." As I understand it (though I could be wrong), there is an effort to identify the genetic basis of autism for the purpose of assessing the risk of its occurrence in offspring. This would probably have the effect of reducing the autistic populating by way of abortion, gene therapy, and special selection of sperm/egg pairs (in vitro fertilization). This is what I consider "curing." The measures and considerations you cite above are what I consider "accommodating," which is vital to successful societal integration.

You are certainly correct that autism is a spectrum of experience, and there may be a limit to what we can accommodate, but we should certainly try.

But I should say, I am not well-read in this subject, and these are off-the-cuff musings. Please feel free to edify me, any one.
posted by troll at 9:19 PM on September 18, 2011 [2 favorites]

The Young Rope-Rider and TheGooch, you're very welcome. Until I read the article I was unaware the program even existed. My wife and I both have cousins with an illness on the autism spectrum and I wonder how different their lives might have been if they'd had that sort of assistance.
posted by zarq at 9:24 PM on September 18, 2011

Interesting. I graduated from Montclair High School back in 2007 and I remember hearing Justin's daily quoting of the Simpsons in the hall way between the art room and the auto shop where the robotics team often worked.
posted by fightoplankton at 9:29 PM on September 18, 2011 [2 favorites]

"I hope my comment didn't come across as dismissive of acceptance and understanding. "

I didn't think so. I had a lengthier comment but Chrome wigged out on me so I'm just going to go back and try to finish my hour long battle to get Andrew to lay down instead of lining up trains and quoting dialogue from Thomas videos. Wish me luck!
posted by MikeMc at 9:33 PM on September 18, 2011 [1 favorite]

You are certainly correct that autism is a spectrum of experience, and there may be a limit to what we can accommodate, but we should certainly try.

I've worked with the autistic for over a decade now, in group homes and in an occupational therapy center, and am also the parent of an autistic child. As you and the young rope-rider point out, autism is a spectrum disorder, and this is very closely connected with to what extent someone on the autistic spectrum can integrate into living independently.

The human brain never fails to fascinate me in this regard, its ability to learn and change. This is why early detection is perhaps the most important part. This seems obvious on its face, but as this disorder has such a wide variety of symptoms it's not so easy to detect at first. Countless clients I worked with, some of whom were still young adults, were unfortunately not well off cognitively because detection occurred so late.*

However, early detection can do amazing things for diminishing or in some cases reversing certain cognitive and social problems, so long as intensive cognitive and social exercises are applied at once. I noticed my daughter exhibiting classic behaviors at around 18 months. Her playschool confirmed that she had been separating herself from the group and had no interest in playing with others. After a series of tests, she was determined to be on the high functioning end of the autistic spectrum, and she began working one-on-one with a teacher in playschool. At 5, she is now socially vibrant, focused, reciprocal and creative. She is, of course, still autistic, but her unique learning style has helped her development because it was properly utilized early on.

This isn't to diminish later treatment, though. I have worked with severely autistic adults in their middle age who still showed remarkable learning capacity. And new treatment methods are being developed all the time, showing some pretty amazing results.

I am also wary of the notion of "curing" autism, as it's difficult to cure any disease we don't fully understand, perhaps even impossible. But I have seen firsthand that there are treatments which can have profound effects on development, even if only begun later on in life. When I consider how far we've come in just the last couple decades, I can't help but be optimistic about what treatments may be available a few years down the road, and what the research for these treatments will teach us about the human brain.

*But there's an emotional component to this as well. In a few cases, there were clients who had been tested and diagnosed as being on the autistic spectrum in their early childhoods who received no treatment until they were in their teens. For a few parents, simply facing the fact that one's child is autistic is simply too difficult to do, emotionally, and treatment is purloined, to the detriment of the child.
posted by Marisa Stole the Precious Thing at 10:25 PM on September 18, 2011 [7 favorites]

Oh man, I know so much Thomas dialogue it's wild. Good luck with bedtime, MikeMc.
posted by the young rope-rider at 10:36 PM on September 18, 2011

What a really great story, thank you Zarq.

I worked with a number of autistic kids during my time as a child-carer, ranging from very mild forms of autistic to profound, non-verbal, non-communicative autism. The courage of the parents, siblings and all the other people invested in these kids was huge, but it was nothing compared to the courage of most of the kids. If regular kids are often anxious, scared and confused, children on the autistic spectrum face threatening situations hourly if not more frequently.

The fact that most of them tried so valiantly to work with, understand and overcome their fears was really very affirming for me. At the same time, I always remembered that I got to go home each night or when the holidays ended etc. I wouldn't say I "only got the fun stuff" - in some respects an after-school or holiday centre can be more threatening for an autistic child than a more familiar and less sensorially rich home environment - but I certainly got my own form of time outs to process what did and didn't work that day, how situations could have been handled differently, or what I might like to bring to tomorrow's session.

The parents of the kids I worked with really hungered for that respite, I think - or at least the sense that the stakes weren't so very high for them; I think the article really captures the sense of urgency or significance a lot of parents feel. Programs like this certainly wouldn't diminish that sense of responsibility, I don't think, but it might give some parents who can feel very alone at times a bit of breathing room and a sense that society at large is also invested in their kids - something I know a lot of parents I worked with didn't always feel. Great stuff.
posted by smoke at 10:41 PM on September 18, 2011 [2 favorites]

Metafilter has the best troll in the world.
posted by Nomyte at 10:54 PM on September 18, 2011 [1 favorite]

From someone that would like to remain anonymous:

I have a relative, we'll call him Z, about 15 years younger than I am, who is severely autistic. As the article notes in passing, close family are the best guarantee of ongoing care after parents are gone. Z is unusually lucky in that his father can guarantee there will be enough money to provide the best of care, even after his parents are gone, but I (and other relatives) will be asked to supervise that care. Because many children with autism do die young, Z's grandparents bought an extra grave plot next to theirs (they both died about 15 years ago, when Z was about 8) in case he needed it untimely young, so that he wouldn't be alone in his eternal resting place. He was diagnosed very early, and while his grandparents, members of the Greatest Generation, were initially reluctant to see him "labeled" and it created a lot of family friction as they struggled to understand the diagnosis, them came to understand his autism and the final gift they left for him and his family was the grave site, if he needed it.

Z's prognosis has been drastically helped by early intervention. (And this, incidentally, is what pisses me off about the "autism caused by vaccines" people -- they divert crucially important funds away from proven treatments, and prevent children from getting treatment than can help them.) Most important are a supportive community and a supportive family. Z has learned about money and normal daily interactions by visiting, routinely, certain restaurants and shops in his hometown, where everyone knows he is autistic and everyone follows his parents' lead on how to treat him. He has learned to make (slightly awkward) small talk with waitresses, to order food, to pay for meals, etc., by visiting the same places over and over who are kind and generous to him and his disability. We have found, to our great delight, that a great many people are willing to accommodate him -- even in foreign countries (even third-world countries), tour guides have been aware of "autism" and willing to help him out so he can go on the horse trek/kayak trip/whatever. The vast majority of people want him to have a happy childhood and a good experience -- it almost makes me cry how completely generous people are when asked.

I would sometimes babysit Z (happily, he can now look after himself for a day!). The first couple of times, he'd ask why and when I was coming over, and I said, "It's a date." "What's a date?" he asked. "A date is when you spend time with someone you really like," I told him. This pleased him immoderately. We spent a great deal of our date playing excruciatingly dull video games, but that's okay. His parents got to spend time alone together and, well, I blew some stuff up.

Z is extraordinarily lucky in that his parents can afford top-notch care for him, but the really crucial thing is a community and an extended family that understand and support autistic children and adults and help them function in the world. Sometimes it's a little like having a small child and having to develop an interest in things that you wouldn't otherwise be interested in -- Pokemon, say, or Bionicles. Learning the complex backstory and everything so you can discuss the intricacies with your autistic loved one.

As a result of having Z in my family, and loving him very much, I have become involved in the local school program that works with severely mentally disabled children who are still functional enough to live in the world, which strives to help them achieve independence. I don't know that I do that much good -- certainly not as much as their teachers! -- but I try to be there and work with them and make clear that they are just as normal as their peers at the regular-division schools. Because they are -- normal is a spectrum.

Z is doing well, and is in a supportive college program for students with high-functioning autism. I hope he will continue to do well, though he will always need support. And he is lucky that he has wealthy enough parents to provide support, even posthumously, and a large enough family that there will always be someone to look after him. My greatest hope is that the United States, as a society, learns to support children and adults like him, so that those without large families or wealthy parents will have the support they need.

posted by mathowie at 11:13 PM on September 18, 2011 [11 favorites]

as someone who's worked with adults on the autism spectrum, the thing that pisses me off most is that so often vocational and socialisation opportunities for these individuals come down to *money*. people who could otherwise be employed or meaningfully engaged in useful activity are denied possibilities because a small business can't afford to take the chance or time, or the personal support which would enable someone to take a job isn't going to be funded. we artificially stunt their growth as humans because it costs too much.

i think it's positively criminal that we are effectively condemning so many people to a lesser life simply because in the grand calculus of social care funding, they're not worth it.
posted by wayward vagabond at 2:05 AM on September 19, 2011 [1 favorite]

My greatest hope is that the United States, as a society, learns to support children and adults like him, so that those without large families or wealthy parents will have the support they need.

I would like to extend this hope to all people in the U.S. who are in need of health care or living care.
posted by Malice at 2:07 AM on September 19, 2011 [5 favorites]

Autism is a disorder; that's not the same as a disease. It's not like depression where you can adjust serotonin levels and not feel depressed as long as you stay on the medication (if you can find medication that works). More specifically, autism is a developmental disorder, meaning that it affects the way you grow up. Strictly speaking, we never stop growing until death, but the diagnosis still mostly concern things that happen in childhood--delayed language and social development, for instance.

You can't travel back in time to cure your childhood, so what would a "cure" for a developmental disorder be? Compensate for the delays and learn language and social skills? Autistic people do that all the time. You can buy dictionaries of facial expressions and memorize them if need be. In doing so, you fulfill a different part of the diagnosis: preoccupation with order.

I guess, if it makes you feel better, you can call that a cure. It's a problematic word because of all those parents who give chelation drugs to their autistic kids in the belief that the disorder will just go away. But maybe it's a little bit true, because if you do get to the point where you can manage your life on your own, no psychologist will ever try to diagnose you. There are lots of people in academia and the technology industries who display many symptoms of autism, but were never diagnosed because they got obsessed with something that makes a lot of money, and it worked out for them. (Craig Newmark. Tarn Adams.) Why should we say they are disordered? If anything, they're better ordered than the people who don't establish and maintain a valuable yet arcane service.
posted by LogicalDash at 5:35 AM on September 19, 2011 [1 favorite]

Just moved my son (asperger's) into his college dorm yesterday. There was a lot of clingy crying and carrying on. But we finally coaxed his mother back into the car for the long drive home.

I am so very proud of that boy.
posted by hal9k at 6:09 AM on September 19, 2011 [12 favorites]

i think it's positively criminal that we are effectively condemning so many people to a lesser life simply because in the grand calculus of social care funding, they're not worth it.

I try to explain to people that yes, Andrew's therapies (ABA, OT, PT, Speech) are expensive but, barring some sort of scientific breakthrough they are the about the only hope he has of eventually leading any sort of "normal" (not a term to be used lightly around the AS community) life. Someday we would like Andrew to be able to live at least semi-independently, is that too much to ask?
posted by MikeMc at 6:14 AM on September 19, 2011

"It's a problematic word because of all those parents who give chelation drugs to their autistic kids in the belief that the disorder will just go away."

That's just desperation. We looked at everything after Andrew was diagnosed. We tried special diets, had test done for heavy metals but eventually we decided that those D.A.N.! treatments were crap and decided to stick with conventional therapy methods. I understand it though (except chelation which is dangerous for children). It's so hard sometimes I wish there was a silver bullet that would fix everything. But if there was, who would my son be? Would I even know that boy?
posted by MikeMc at 6:21 AM on September 19, 2011

I think it's important to note that the therapies and assistance that allow autistic children to grow up into functional autistic adults are saving society money in the long run. When autistic people aren't given the chance to live as a part of society, they frequently end up warehoused in institutions, which is far more expensive. As always, an ounce of prevention (or in this case, early intervention) is virtually priceless.

I see people in this thread bemoaning the cost of therapy and assistance, but it's actually a savings-- it's what will create contributing members of society who happen to be autistic.
posted by nonasuch at 8:41 AM on September 19, 2011 [1 favorite]

There are lots of people in academia and the technology industries who display many symptoms of autism, but were never diagnosed because they got obsessed with something that makes a lot of money, and it worked out for them.

Heh. When we took our daughter to meet a neurologist for a second opinion (and his was the same that we got from the CARS test), he added, "For what it's worth, you should understand that many of my own colleagues would probably fall somewhere in the same range of the spectrum as your daughter."
posted by Marisa Stole the Precious Thing at 5:17 PM on September 19, 2011

This quote from the article jumped out at me. I've known people with Asperger's, and the struggle to connect on what society says is a "normal" level is constant and neverending.

“Pinocchio,” he informed anyone who asked, “is about a wooden puppet who was brought to life by a blue fairy and goes through mischief and mayhem so he can be approved to be a real boy.”

Meanwhile, does anyone know if his artwork is for sale? Because his very real renderings of cats (as seen on his pets page) are phenomenal.
posted by flyingsquirrel at 8:03 PM on September 19, 2011

Meanwhile, does anyone know if his artwork is for sale? Because his very real renderings of cats (as seen on his pets page) are phenomenal.

I would also love to know this! I have a terribly small budget but would love to buy one of his carnivorous plant paintings - they are absolutely gorgeous. This was a very touching and beautiful article, thank you so much for posting.
posted by dialetheia at 10:17 PM on September 19, 2011