AutismTown

February 17, 2007 9:49 PM

AutismTown?Autism is a puzzling and disastrous disorder which has recently spread to affect 1 in 150, according to new government data; now there is a new non-profit "pixel-based" site to organize the community and fund research and services. A bit of a "who's who" in the field...
posted by oberleit (21 comments total)

Bewildering. I guess it sort of recreates the experience of an autistic person at a party full of strangers.
posted by grobstein at 9:56 PM on February 17, 2007

"disastrous disorder"?
posted by hal9k at 10:04 PM on February 17, 2007

It's the Million Dollar Home Page done for a good cause. Sweet!
posted by frogan at 10:08 PM on February 17, 2007

Million dollar homepage things are probably a pretty good way to rase money for good causes, similar to getting named bricks on buildings that people donate too.
posted by delmoi at 10:24 PM on February 17, 2007

It's not clear that autism is more prevalent now than it used to be. The rise in the rate of diagnoses may be an artifact caused by expansion of the diagnosis definition (and inclusion of more borderline cases) combined with more attention being paid to it by diagnosticians.

As to the "disastrous" part, the degree to which a given victim is impaired by it varies enormously.
posted by Steven C. Den Beste at 10:42 PM on February 17, 2007

The rise in the rate of diagnoses may be an artifact caused by expansion of the diagnosis definition (and inclusion of more borderline cases) combined with more attention being paid to it by diagnosticians.

It's more than an artifact: Because ASDs are diagnosed on the basis of behavioral criteria, and clinicians might apply criteria differently to arrive at a diagnosis of autism and related subtypes, determining prevalence is challenging.
posted by three blind mice at 11:12 PM on February 17, 2007

Just to back up Steven C. Den Beste above, the current autism epidemic looks to be more related to changing awareness and definitions than an actual surge; most scientists studying autism seem to think the recent growth is actually modest. I'm no expert but the article does raise some good points.
Of course none of this is to say raising money for autism research is a bad thing, I just like to be well informed.
posted by cftarnas at 11:15 PM on February 17, 2007

Early diagnosis and intervention has helped a number of kids, but the earlier you go, the more likely you're going to misdiagnose.

For instance, my daughter. At 18 months I had her in to a speech therapist because she really wasn't talking all that much. The therapist, after some testing, declared she more than likely was autisitic and showing early signs of apraxia. We were understandably devastated.

Until her cousin (a speech therapist as well) took one look at her two weeks later and said, "I think the other therapist is nuts. She's clearly engaging and making eye contact."

So, we took her to our local center for the developmentally disabled, and after several rounds of testing and retesting, it was clear she was well within the limits of "normal" -- in fact, she was ahead in physical development, contradicting the earlier "apraxia" finding. A follow up six months later confirmed that she was, indeed, as normal as you'd expect for having the geek parents she had. She really didn't start talking until she was 2 1/2.

We're pissed at the first therapist, but given that we live in a city loaded down with autism research and intervention services, I think we know why she was so quick to jump to autism. Better catch it early than not, I guess. But I can see how a lot of "late bloomers" would get caught up in the quest to find the ASD kids before their brains lose their pre-3 plasticity.
posted by dw at 11:29 PM on February 17, 2007

dw, that seems to be the norm rather than the exeption, to the point that The Simpsons was making jokes about it 10 years ago: "Fretful Mother magazine says that if [Maggie] doesn't talk by age 1 we should consider a corrective tongue extension!"
posted by Silentgoldfish at 11:36 PM on February 17, 2007

As to the "disastrous" part, the degree to which a given victim is impaired by it varies enormously.

Thanks for the info. I'd argue that the term "disastrous" better applies to the financial burden taken on by the parents - mostly single-parent households - regardless of where the child falls in the spectrum. Plus constant fights with insurance companies and school systems that allow some of these kids to fall by the wayside.
posted by hal9k at 11:43 PM on February 17, 2007

It's like the Million Dollar Homepage, but better at math and stuff.
posted by pruner at 12:50 AM on February 18, 2007

My simple question to those of you who want to write off the increase in autism as simply better diagnoses: Where are the 1 in 150 adults with autism in the general population? Because my son, you can't miss the fact that he is autistic. Ditto with the hundreds of fellow students at his school (a charter school that serves only autistic children). I have no doubt that better diagnostics are a component of the increase, but I find it difficult to believe that it accounts for the entire increase.

That being said, that is of course nothing more than my own impression based on nothing but anecdotal experience gathered over the course of thirteen years with an autistic child. I would love nothing better than to be conclusively proven wrong, because that would mean that decent studies had finally been funded and completed and we would be a few steps closer to prevention and/or a cure. Now that Rep. Joe Barton has been stripped of his ability to block funding, and the Combating Autism Act has been passed by Congress, it may finally happen. What would make me truly happy would be an actual medical test to diagnose autism instead of it being diagnosed entirely by symptom.
posted by Lokheed at 4:37 AM on February 18, 2007 [1 favorite]

Part of my work involves autism research; we find it relatively easy to find parents who want their children to participate, but very, very difficult to find adults willing to participate. Our best explanation for this is not that incidence of autism is rising, but that adults with autism have often been misdiagnosed (typically with schizophrenia) or were never diagnosed at all - either way, they're probably well ensconced in an adult live by now where they're either living independently, cared-for by relatives, or institutionalized. Those who are being cared for by relatives are most likely to get to us; their family may hear about our research and persuade the person with autism to be part of it. But for the ones who are leading an independent life, it's pretty much part and parcel of autism that they're not going to seek out new explanations or treatments for their situation. If they've got a life and a routine that works for them, they're going to be clinging to that routine that serves them well - not seeking out new doctors and new diagnoses. Children have a whole system of parents, school systems, doctors, etc. looking out for them and steering them into diagnosis and treatments that the adults do not.

Of course, that's just our best guess. It's entirely possible that the truth is a combination of the two factors - increased incidence of autism in all ages, plus a better diagnosis and support system for children.
posted by Stacey at 5:55 AM on February 18, 2007

Poor word choice on my part regarding "disastrous", I think... I meant to say "devastating".
posted by oberleit at 6:22 AM on February 18, 2007

Why even devastating? Autism (in the form of Asperger's syndrome) has proven to be one of the greatest wealth-creating engines in history.

Then again, perhaps I'm being glib, which must be annoying to folks like Lokheed who are the parents of children living with autism.

Lokheed: why did you choose the charter school route? Why not inclusion in a regular school setting? Does that option exist in your district?
posted by KokuRyu at 7:41 AM on February 18, 2007

I like that a site advertising "help, hope and understanding" has an Autism Speaks ad on the front page.
posted by LogicalDash at 8:19 AM on February 18, 2007

My simple question to those of you who want to write off the increase in autism as simply better diagnoses: Where are the 1 in 150 adults with autism in the general population?

They're everywhere! For instance, I know at least a half dozen people with Asperger syndrome. The few that I've discussed with say that they were only diagnosed late in life -- as a kid, nobody ever suggested that something might be wrong. Were they children now, though, no doubt they'd be diagnosed, and chalked up as a part of the "increase" in autism.
posted by waldo at 8:23 AM on February 18, 2007

Thanks for the post, oberleit.

Koko, even though my son is a lock for the Nobel in a few years, like Steven said, autism encompasses a wide range/spectrum. BTW, be all the glib you want as far as I'm concerned. My parents were told I might be autistic. So they bought me watercolors and an easel. That's not far from the truth.

As to regular schools, we've had to fight for years advocating for our son's education when the public school dropped the ball. Three years ago, a private school here had an opening and we almost had to go to court for the public school to let him go (< $). this school mixes asd with typicals so both sons and our daughter now all go to school em>together. 7 to 1 teacher to student ratio, most working on post-grad degrees. Great curriculum. Hands-on science. In six months, he went from whole days curled up in a fetal position in the nurse's office of the public school to being elected class president in the private school.

I work in the research end of autism and low incidence and see misdiagnosed, undiagnosed and untreated kids, schools without a clue that fight to mainstream or shove them in a corner and deal with the symptoms, IEPs ignored, and even meds withheld. And a higher incidence of single-parent households, most underemployed.
posted by hal9k at 8:38 AM on February 18, 2007

hal9k: As to regular schools, we've had to fight for years advocating for our son's education when the public school dropped the ball.

I get it now. I'm assuming you live in the States, whereas I come from Canada, and education funding mechanisms are totally different in the two countries. But I think the same problem exists up here. "Special needs" students, at least in British Columbia, are kind of lumped together in the same class, and may receive extra per student funding. However, no school can turn away a student up here because of lack of funding, as you suggest happened with your child.

But there is an ongoing struggle in Canada to fund Applied Behavioural Analysis in schools. The provinces, which fund education, claim there is no money for this therapy, which is supposed to cost $30-$80K per year.

The last link is pretty old, but the case is still before the courts.
posted by KokuRyu at 8:59 AM on February 18, 2007

Lokheed: why did you choose the charter school route? Why not inclusion in a regular school setting?

Actually, he was in the public schools up until last year. We had excellent experiences with the programs at the elementary school level, and I have nothing but wonderful things to say about all of the teachers and teaching assistants who worked with our son all the way through the sixth grade. When he started middle school, however, it all changed.

He was basically neglected for six months, allowed to just sit quietly off to the side of the classroom while the teachers dealt with more troublesome students. That's great for the teachers, but not so great for our son. He regressed almost a year in the five months he was in that classroom.

Then there was an incident with the school bus, in which he was dragged kicking and screaming onto the bus and forcibly strapped down. Anyone paying attention and listening to him would have known that all he wanted was to go back to the classroom and get his CD player. They specifically bring the special needs students out to the bus ten minutes earlier in order to handle things like that that come up, but rather than listening and working with him they effectively tortured him. He was still completely distraught by the time he got home a half hour later.

The next day I tried to contact his teacher to find out what happened. She did not respond to my emails. Attempts to call the classroom failed because the telephone in the room was broken. I later discovered that the phone had been broken since the beginning of the year. I also left messages with the school office, which were never returned. I finally went down to the school personally to try to talk to someone, and basically had to stand in the front office and state that I would not leave until I had personally spoken to either the principal or the assistant principal. At that point I still had no idea what had happened on that school bus, or which specific school employees were involved. All I wanted was information. I did finally speak to the principal, and to the teacher, and got a much clearer picture of what had happened. In my opinion, the teacher was completely burned out, the teaching assistants in the classroom were well-meaning but poorly trained, and in my judgment it was simply not the right environment for my son.

The next week he started at the charter school, and it was like night and day. Every single person on that campus is extensively trained on how to work with autistic children. Every child gets physical therapy and occupational therapy, in addition to the regular classroom work. We saw an immediate improvement in my son's progress. In particular, he was finally completely potty trained within two months of starting at the charter school, something we had been battling for years. Believe me, it gets really old changing diapers when your kid is twelve years old.

So yeah, I have no problem with public schools in general. If they had continued to meet my son's needs I would have been happy to leave him there. I am, and always have been, very involved with his education. I put in volunteer hours at his school (every school, over the years) frequently throughout the school year. I have nothing but the greatest respect for ESE teachers, and support them however I can. But at the end of the day, I have to do what is right for my son, and right now that means having him in the charter school.
posted by Lokheed at 9:58 AM on February 18, 2007 [2 favorites]

However, no school can turn away a student up here because of lack of funding, as you suggest happened with your child.

I think hal is actually saying that the public school initially refused to let their son leave for private school, because the public school didn't want to lose the extra funding for him.
posted by ROU_Xenophobe at 10:01 AM on February 18, 2007