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Over the past 4 years, I've lost track of autism and autism research, a subject I used to know by heart.
It's not as if I've been completely out of touch. I did manage to figure out Andrew needed a clicker & a linguist-created program to teach him grammar. (Good results with both thus far.)
But Jimmy has had to fend for himself, just about. (Am currently scheming to teach him how to read after all. He so wanted to learn, back when he was 14. He used to bring me the LeapPad reader and sit beside me on the sofa so I could run the LeapPen over the LeapStories. And for years we tried to teach him sight words, not one of which he learned, not even his name. Now that I know what I know about whole language, I realize that was a hopeless undertaking from the get-go. Jimmy doesn't appear to "see" well; when he was tiny, he couldn't see the elephants at the zoo until they moved or, better yet, pooped. If he couldn't see elephants, how was he going to see laminated words for "salt" and "juice"?)
Anyway, today, taking a stab at clearing off the paper cliffs soaring above my desktop,* I unearthed an Autism Speaks brochure and decided to check out their web site.
I found this:
Final Emerging Theme from the 2008 SFN [Society for Neuroscience] Meeting
Altogether these research advances demonstrate the ostensible "treatability" of the component features of autism despite varying etiologies proposed (genetic, immunologic, endocrinologic, perceptional). Such results, which have emerged only in the last two years, are rapidly redirecting researchers to an entire new field of research that is energizing the movement for autism treatment. The results also suggest that the complexity of autism will not require one "cure-all" strategy but an arsenal of therapies that is adaptable to the underlying biology of the presenting symptoms in each individual.
Right again!
Treatment-versus-prevention was a debate within NAAR (National Alliance for Autism Research), where I served on the board. NAAR was the first nonprofit devoted to researching "treatment, prevention, and cure" for autism, but most folks there were thinking prevention.
That seemed wrong to me, logically speaking.** One of the geneticists I'd interviewed had told me that as many as 90 to 100% of the population may carry "autism risk genes." I have no idea whether he would say the same thing today, but that's what he said then.
Well, if 100% of the population carries autism risk genes, good luck getting a test you can do with an amnio.
At least, that's the way it seemed to me.
Treatments and functional cures ought to show up before preventions.
Let's hope they do!
* gross exaggeration
** I'm also uncomfortable with prevention if it means what it has meant for children with Down syndrome. I'm a little uncomfortable with prevention and cure both, as a matter of fact. See: Harvey
8 comments:
Another autism resource for parents and teachers that you might want to check out (don't know if it is suitable for Jimmy, but it might be), is Teach Town. It developes an individualized program for each student in several domains. It was recommended to me by a psychologist for whom I have a lot of respect, and is working well for one of my students. Check out the website at Teach Town website
It's based on ABA principles, has a strong research base, and provides for home, school and therapist interaction (if applicable).
Oh, another thought -- it sounds like Jimmy isn't the prototypical "visual learner" that children with autism are assumed to be. Neither is my student. His auditory skills are far superior to his visual skills.
He did extremely well with Headsprout Early Reading and had decoding ability at the seventh grade level at the end (his comprehension was of course much more limited -- but prior to that he could not decode or read at all).
Some pluses:
- Kids usually love Headsprout, so he will enjoy doing it;
-You can have him repeat lessons, as needed, and you can stop in the middle of lessons and it will "save" where you stopped
-Headsprout has some knowledgeable people on staff who can provide support for using it with a student with autism, and they have an 800 number
- You get a money-back guarantee. If you are not satisfied that it is a good program for your child you can withdraw before 30 days and get your money back.
It's not for everyone but it works quite well for some very challenged kids, and with a money back guarantee, what's to lose?
wow!! Thank you!
(I was going to ask you exactly these questions --)
With the caveat that I know nothing about autism, do you think "autism risk" is in any way related to the relatively new notion of Autism Spectrum? Because while ASD is all the rage is various diagnostic situations, the people I've known who would qualify as having Asperger's have basically NOTHING in common with Jimmy, except that outsiders find them frustrating to deal with. It's as if the social cues/social interaction failures lead people to diagnose ASD even when no other issues are present--and while severely autistic folks also have the social interaction issues, that seems a symptom, not a proximate cause, and as such, it's strikes me as odd that that phenotype is really what leads us to declare "a spectrum".
Catherine, when you were on the board of NAAR, did Asperger's or the rest come up at all? Did ASD have a place at NAAR, or was it really about severely autistic people and treatment, etc.?
the people I've known who would qualify as having Asperger's have basically NOTHING in common with Jimmy
They might have more in common than you think!
That's been a funny thing for me.
I believe my dad is Asperger's, which means I was raised by an autistic parent.
As an adult I've raised two kids with severe autism.
When Temple and I got together, working with her was utterly natural to me.
After a while I realized I may be the only person on the planet who can write a book with Temple.
By the time NAAR began Asperger was being discussed & had, I think, been added to the DSM or was about to be added.
I'm trying to think how much time we spent focusing on it....probably not too much.
But Temple was on the Honorary Board & was extremely famous amongst autism parents & volunteers.
Historically, the reason Asperger's syndrome was grouped with autism -- actually, you've reminded me: this was a debate that was going on back then....
There were at least two reasons why Asperger syndrome came to be seen as a mild form of autism.
One was a famous and apparently very well done study of autistic twins in post-war Scotland, I believe. (I need to fact-check this Comment, so take it with a grain of salt.)
As I recall, the purpose of the study was to determine heritablity. They looked at identical twins in which one twin had autism, and determined that heritability was 50%. If one twin had autism there was a 50-50 chance the other twin had autism.
The researchers went back 15 years later or so and found that the non-autistic twins were quite different. They were socially odd, they didn't have jobs, they still living at home, etc.
Basically, they were autistic, and this, I believe, was the moment that the concept of the "BAP," or "broader autistic phenotype" came into being.
The other event was Ed Ritvo's study of every autistic child in the state of Utah.
The moms would bring their autistic kids in for Dr. Ritvo to look at & some of them would say, "He's just like his dad."
They heard this so often that finally they decided to look into it.
They decided they had found Eleven possibly autistic parents
Jimmy was diagnosed by Ed Ritvo, who just that day had gotten off-prints of his "Eleven possibly autistic paernts" letter, published in JADD.
There may have been other key episodes in the debate; I don't know.
I do know that people kept seeing twins & even triplets where, in the case of the triplets, two twins were severely autistic and the third was Aspergers.
This isn't to say that there may not be an unrelated disorder that is grouped with autism & Aspergers.
But it is to say that it's fairly well nailed down that there are extremely mild (or high functioning) forms of autism that don't involve language delays.
In terms of the DSM, that's the difference between autism & Asperger syndrome. Asperger children don't have a language delay.
Asperger children also have normal IQ, but autistic children can have normal IQs, too.
I meet some ASD children these days, but most of my experience with ASD folks comes from MIT. As you might guess, there are loads of them there.
But what I found so interesting was that I could relate to them, too. I had profound shyness, though, shyness that meant I was socially as inept as they were, and I had some how missed a lot of social cues and was incapable of reading them, too. I think if I were a child now, I would be labelled ASD, but I know that the ASDers I knew weren't afraid like I was--they weren't afraid, and most did not care emotionally about someone else's discomfort, where I was profoundly aware of it and horrified by it. But, it's still similar because I was so highly sensitive to my environment, and my social ineptitude came from over-stimulus and then panicking. My over-stimulus meant I was picking up too much information to make heads or tails of, and panic attacks would make it so I couldn't recognize what was happening--no working short term memory, you know.
I wonder how often people have teased out these differences. I imagine the really excellent autism/ASD/BAP researchers know all of this, but I can't imagine most phd psychologists do.
So I can imagine you could handle Ms. Grandin when no one else could, but I wonder too if most people recoil at the infuriating part and never get past it, not really noticing or caring if the ASD/BAP folks are autistic or not, and being quite willing to categorize someone as autistic as soon as they fail to perform "properly" in social circumstances now, whether or not it's really autism.
oh, btw,
Do you think Jimmy liked the LeapPad and LeapPen because of the audio/physical parts? You said he doesn't see things that don't move--did moving the pen and hearing the word make him respond in ways that looking at something never would? or do you think moving the pen made him see the word somehow?
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