Temple Grandin on how we should treat autism and her new book, The Autistic Brain
|photo of Temple Grandin by Rosalie Winard, scan of her brain by Dr. Marlene Behrmann, Brain Imaging Research Center, Carnegie Mellon University, Pittsburgh|
|Temple Grandin's new book, The Autistic Brain, uses scientific breakthroughs like brain scans to better understand autism.|
Grandin is famous, though, for doing it all with autism. When she was born, in 1947, autism was still a new diagnosis. Today, one in 88 children is "on the spectrum." In the years between, Grandin has become an advocate for autism and an icon for those seeking to better understand it.
Her new book, The Autistic Brain: Thinking Across the Spectrum (with Richard Panek), continues that work. In it, Grandin looks at the latest science to explore new ways to treat autism, and discusses the unique strengths that those with autistic brains can offer. In advance of her talk on Thursday night at the Fitzgerald Theater, Grandin spoke with Dressing Room about the future of the autism diagnosis, and why Minnesota should require coverage for early intervention therapy.
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Dressing Room: How did researching and writing this book illuminate your personal experience and relationship with autism?
Temple Grandin: I got a brain scan using new technology, and it was very interesting to see how things matched up. I'm a very visual thinker, and that brain scan shows a big visual circus. The Autistic Brain has another brain scan that shows why my math ability was trashed, because the left parietal area is full of water. And my constant panic attacks are probably explained by my amygdala, or fear center, being three times larger than normal. What's showed up in real life has showed up in my brain.
Yes, those brain scans really underline one of your main points, which is that we should stop focusing so much on an overall diagnosis, and start focusing on treating symptoms. Why would this help?
Well, let's take language. With this new technology, especially the high definition scanning that's been developed just in the last two years, you can really diagnose specific types of language problems, because autism has more than one type of language problem. In The Autistic Brain, there are brain scans in the new High Definition Diffusion Imaging, which show the circuit for "speak what I see." And it shows the normal circuit, and then it shows my circuit. And my bandwidth. The number of fibers I have in that circuit is less, so I have problems getting speech out. That's a very specific language problem. There are autistic kids who are echolalic -- in other words the speech comes out and they can recite movie scripts, but they don't know what they mean. So that kid probably has a normal "speak what you see" circuit.
Do you foresee that this technology could lead to new diagnoses under the umbrella term "autism"?
Autism is a very, very broad syndrome. In the first chapter of The Autistic Brain, we go through the whole history of the American Psychiatric Association DSM, which is the statistical manual, and they kept changing the definition of autism over the years. They broadened the definition of autism. This is not precise. And now they want to take out the Asperger's and make that social communication disorder. Well, social communication is one of the core criteria for being on the autism spectrum. So to say that's not autism is pretty ridiculous. If you're autistic, you've got to have both social communication problems and fixated interests or attendant behavior.
You've said that "the mild Asperger types have always been there; it's just that we used to label them geeky or nerdy." Do you think this increased propensity or ability to label and diagnosis has contributed to the increased rate of autism?
I think on the mild end of the spectrum, most of it's increased detection. You go to Silicon Valley, and 25 percent of the people out there in Silicon Valley are probably mildly on the spectrum and they tend to avoid the labels. Then a lot of kids get labeled when there's no speech delay, but by third or fourth or fifth grade they don't have any friends. I think that's mostly increased detection. I can think of old people I know who are on the spectrum and they're employed. But I do also think there have been more severe cases that are real.
How do you start to try to explain that?
Well, you have older parents where you're going to have more copying errors in their genetics. Also, there's more and more pharmaceuticals that everybody's taking, and that might be doing things to the fetus. There's plasticizers in water bottles and environmental contaminants. There are some autism clusters around things like oil refineries and plastics plants. There can be a lot of different factors. Also, as you get clusters of people in the computer industry, you're now concentrating the genetics.
You write about job training in The Autistic Brain. What kind of job training would you like to see people with autism receive more of?
Well let's just go on the verbal end of the spectrum. Kids that are less verbal, when they're about 13 years old -- the age where you used to get paper routes, and we don't have that anymore -- they need to start getting a job. My mother set up a lot of jobs for me. She set up a little sewing job for me when I was 13. And when I was 15 I was cleaning horse stalls every day. When I was in college, she worked on setting up two internships. One of those internships I worked in a research lab and I had to rent my own house with another person. And my mother set that up with some of the professors at the college. This is where the parents and the teachers have got to get in and help set this stuff up, help set these kids up, and it needs to start, I think, before age 16, so you have to do it in an informal economy. How about walk dogs for people. We've got to do it every day. That's my new paper route. These kids have got to learn how to work. Even when you have a job you like, there are parts of that job that are not fun.
So you think that teenagers with autism need less babying and more preparation for how they can participate in their communities as adults.
Oh, I don't think they should be babied. Now there's some things you got to watch out for, for some sensory issues. There are some people that cannot tolerate fluorescent lights. There are some people who have problems with loud noise. Multitasking can be a problem. Remembering long strings of verbal instructions can be a problem. So if they have to clean the ice cream machine at McDonald's, you're going to have to write down on a piece of paper a checklist: How you take that machine apart and put it back together again. We've got to do those kinds of things to enable. But I really think these kids have got to learn work skills. I'm seeing too many kids that just won't get up in the morning and get their butt out to a job.
|Dr. Marlene Behrmann, Brain Imaging Research Center, Carnegie Mellon University, Pittsburgh|
|A scan of Grandin's brain, left, when compared with a "control" brain, right.|
I have a whole chapter in The Autistic Brain on this. The thing is, is that people with autism, especially on the milder end of the spectrum, have uneven skills. They're good at one thing and they're bad at something else. You've got to build on the area of strength. My area of strength when I was a child, and it showed up when I was around eight years old, was art. Art was always in colors. Of course I could do lots of different things. Then when I got to high school I absolutely could not to algebra, that was impossible. And that tends to be a pattern.
Another kind of mind is the mathematics mind. This is the child who's eight years old and he's really good at math, but struggling in reading. Well, then you move him ahead in the math. These are the kids who grow up to be computer scientists and engineers, where people like me can be industrial designers, artists, graphic designers, photographers, animal trainers. And then a third type of mind is the word mind. This is the kid who knows all the facts about history, knows all about his favorite football team or whatever. Is a verbal thinker. And these kind of kids would be good at things like library jobs. Some of them are good at sales of specialized goods.
Here in Minnesota, our legislators have been debating a law that would require insurance companies to require IEIBT therapy -- intensive early intervention behavioral therapy. What's your position on that kind of treatment?
I think it's essential that little kids -- two and three years old -- when they're not talking, when they're showing all the odd behaviors of autism, get early intervention. Every expert will agree on that. We work on these little ones, 20 hours a week of one-to-ones, it really improves the prognosis. The worst thing you can do with a three year old who's not talking is to do nothing. I don't care what his diagnosis is. If you have a three year old that's not talking, you've got to start a lot of intensive work with him. And I did a lot of things with board games and turn-taking. You've got to teach these kids how to take turns. And that was done with a Parcheesi board when I was a child, because there were no children's games right after the war. So for the state of Minnesota to be funding early intervention I think is extremely important, because the research is absolutely clear -- and this is what all the experts agree -- starting the early ones the minute you see abnormal behavior, abnormal language -- I don't care what the label is -- the prognosis is going to be a whole lot better.
Is there one question that you receive the most from people about living with autism?
Well, one of the things that people don't understand are the sensory problems. Some kids are sound sensitive. Some can't stand the flicker of fluorescent lights. Others can't stand scratchy coats. And these sensory issues are extremely variable, and I want to add, they're not just limited to autism. Some dyslexic kids, ADHD kids, kids with learning problems, even head injuries, will get these sensory issues and they can be very debilitating. They might make it impossible for you to go in a restaurant with five TVs going at once, because you just can't stand the onslaught of over-stimulation. In the book I have a whole chapter on the sensory issues, and I think that's the top area for research. It's extremely variable. One autistic person has a visual sensitivity problem and the other one does not.
That goes back to what you were saying about how we have to treat for symptoms more than for an overall diagnosis.
The one place where you can really treat for the umbrella diagnosis is the little kids. You've got two year olds and three year olds that are not talking, you go in there and you do the same treatment on all of them pretty much. Some kids you can go in and yank the front door open, other kids you can sneak in through the back door, because they're mono-channel -- they can't see and hear at the same time; you've got to either talk or show them something. But all little kids that are not talking and doing a lot of strange behavior need at least 20 hours of one-to-one teaching. At that early point, you treat them more or less kind of the same. But then they diverge into these other groups.
IF YOU GO:
An Evening with Temple Grandin and Kerri Miller
Thursday, May 9. 7 p.m.
$25. Sold Out.
The Fitzgerald Theater
10 E. Exchange Street, St. Paul