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Autism First-Hand: An Expert Interview With Temple Grandin, PhD


Editor's Note:
As a child, Temple Grandin, PhD, like many children with autism, couldn't speak and raged for no identifiable reason. Yet she grew up to earn a PhD in animal science from the University of Illinois; pioneer humane ways of treating cattle using knowledge gleaned from her disorder; and write on the sensory and cognitive experience of being autistic. Medscape's Randall White, MD, interviewed Dr. Grandin, Associate Professor of Animal Science, Colorado State University, Fort Collins, on her insights into autism spectrum disorder.

Medscape: In one of your essays you wrote, "Teachers need to use fixations to motivate instead of trying to stamp them out."[1] What would that achieve for people with autism?

Dr. Temple Grandin: Let's say that a child loves trains -- that's a very common fixation. Well, read a book about trains, do math problems with trains, read about the history of the railroad. In other words, if a kid loves trains, you can somehow drag a train into just about every subject in school to get him motivated to study it. Fixations are tremendous motivators. Look at someone like Mme. Curie, who discovered radium; she certainly was fixated on what she was doing. A little bit of fixation gets things done.

Medscape: You also wrote, "I screamed because it was the only way I could communicate."[1] Describe that experience from childhood.

Dr. Grandin: That was when I was a little kid. I remember not wanting to wear a hat. So I screamed and threw it on the floor of the car, and mother said, "Put it back on." So I screamed and chucked it out the window.

Not being able to communicate is a tremendous frustration. If a child has a behavior problem, especially a nonverbal child, you've got to figure out what's causing it. Is it frustration because they can't communicate? Another problem might be sensory sensitivity, something that's often ignored. Every time you take the kid into Wal-Mart, he's screaming. Well, the reason for that is that the fluorescent lights are flickering and driving him crazy, the noise in there hurts his ears, the smells overpower his nose. Wal-Mart is like being inside the speaker at a rock and roll concert.

Then you've got to figure out, when you have a nonverbal child who all of a sudden has a behavior problem, whether he has a medical problem, like acid reflux, that's not diagnosed. Other reasons they might scream would be to get out of doing something or to get attention.

Medscape: Regarding your own history with communication problems, you wrote, "The speech therapist was the most important professional in my life."[1] Why was that so?

Dr. Grandin: Because she got me talking. She started working on me when I was 2 and a half years old, and then when I was 3, my mother hired a nanny who spent hours doing lots of little kids' turn-taking games. I can remember, after lunch, I had a rest period when I could revert to autism, and I would pick the fuzz off the rug and eat it, and dribble sand through my hands -- I can remember just getting hypnotized doing this. If I had been allowed to do that all day, I wouldn't be here now.

I'm a big believer in lots of early intervention with little kids. We've got to get them talking if possible and get them interacting with people. I think the social interaction of going to elementary school is extremely important. But then when you get into being a teenager, in the real mild Asperger's, there are some who just need to be removed from the social pressure cooker. You know, I think sometimes we go overboard on social conformity, especially with teenagers.

Medscape: A recent story in The New York Times examined the conflicts that occur between some people with autism, some of whom protest any treatment, and their parents.[2]

Dr. Grandin: I've read those things, the whole conflict about ABA -- applied behavior analysis. Those techniques are mainly for very little children, for 2 to 5 year olds, to get language started. They're not for high-functioning 8 and 9 year olds. And most people in those protests are the more mild Asperger's types. We need to be working on developing the talents those people have so they can have jobs and support themselves. I really believe there's a certain portion of high-functioning Asperger's patients who need to be going to the university and getting in with their intellectual peers, and just skipping the whole teenage mess because that's not a life skill you need anyway. And it was the worst part of my life, absolutely the worst. Interacting with teenagers is not part of my career!

Medscape: Would you have achieved what you have if you were not autistic?

Dr. Grandin: I don't think so, because there was a motivation that I had that a nonautistic person doesn't have. And I had a visualization skill that goes beyond what most people have. When I designed a piece of equipment, I could actually test-run it in my head like these virtual-reality computer programs. And I didn't even know that other people couldn't do this. That's the positive side of autism. Now obviously, if you have a child who's still nonverbal and not toilet trained, that's the negative side of autism. It's a continuum, going all the way from Einstein down to somebody who remains nonverbal and not toilet trained.

Medscape: I want to talk with you about the relationship of doctors with people with autism. Have you been under the care of a physician, and if so, how would you rate the care you received?

Dr. Grandin: Well, when I was a little kid, I had a psychiatrist, and of course he was Freudian trained. He wanted to find my psychic injury, which we now know is totally wrong. And I think he helped my mother more than he helped me. He really had very little effect on me.

The most important people in my life when I was older were Mr. Carlock, my science teacher, and my aunt out on the ranch. She tolerated my fixations rather than trying to get rid of them. Mr. Carlock directed my fixations into studying science. Unfortunately, when I was in high school, the professionally trained people like the psychologist wanted to get rid of my cattle-chute fixation. Well, that cattle-chute fixation ended up being the basis of my entire career, and half of the cattle in this country, when they go to a meat plant, are handled in equipment I designed. I think that's a pretty good thing to do with an autistic fixation. The professionals wanted to just take it away and stamp it out.

Medscape: What should physicians and psychologists who treat children and adults with autism keep in mind?

Dr. Grandin: First of all, we have to look at the functioning level, because what's appropriate for nonverbal patients is totally different from what's appropriate for very mild Asperger's patients. I think they do need to learn social skills, but I think we get to the point where there's so much emphasis on social skills, there's no emphasis on career development. I get social interaction through shared interests with things at work, like talking about how to build something or solve a problem in animal behavior. Now that's really interesting to me; social chit-chat's not.

Yes, we have to learn social survival skills. One of the things I had to learn is you can't tell people off and tell them they're stupid. I got fired from a job for that early in my career.

Medscape: You have been on the same low dose of an antidepressant for 20 years. Can you describe how you arrived at this and how it helps?

Dr. Grandin: As I got into my late 20s, anxiety and panic attacks got worse and worse. It was like a constant state of stage fright. I read an article in Psychology Today called "The promise of biological psychiatry." This was back in the late 70s, and it talked about antidepressants for panic disorder and gave some doctors' names. I looked their names up in an Index Medicus book. Mr. Carlock had taught me how to use those books.

I got this paper with a list of symptoms in it, and I said, "That's me!" They used 2 different drugs back then, imipramine and phenelzine. Phenelzine has too many problems with the special diet, so I talked my family practitioner into giving me imipramine, and within 3 days the anxiety subsided -- it was like magic.

At autism meetings, I've had parent after parent come up to me and say, "He did just great on a little bit of Prozac [fluoxetine], and they gave him more, then he went ballistic and doesn't sleep at night." A lot of people on the spectrum need a much lower dose of something like Prozac than nonautistic people do.

Medscape: Are you still on imipramine?

Dr. Grandin: I switched to desipramine after about 3 years because I got tinnitus, and then it stopped. The tinnitus got triggered by a really loud sound from an electric drill.

One of my big concerns, after all this "black box" stuff that's going on now with antidepressants, is doctors are going to start substituting things like risperidone in place of Prozac. I think that's just terrible. I'm seeing so many kids morbidly obese from atypical antipsychotics, and parents are saying, "Oh, my kid was eating dog food he was so hungry; he eats flour." I think a little bit of Prozac would be better than getting 100 lbs overweight on olanzapine.

So you've got a black-box warning because there's a slight chance of talking about suicide when the side effects with the atypicals are way worse. I went to a meeting the other day and a doctor had given risperidone to a 2 year old just to help him sleep. That's ridiculous! Maybe they ought to try a weighted blanket. Oftentimes that helps them to sleep.

Another thing that's a real problem is educating general practitioners not to tell parents that the kid's going to outgrow it when they bring in a 2 year old showing autistic symptoms. That's still a problem, especially when you get away from the big cities -- it's a medical waste land out there. The thing that happened with the risperidone and the 2 year old was in a little country town.

Medscape: The weighted blanket reminds me of your squeeze machine.

Dr. Grandin: That's right. To a lot of these kids, pressure is very calming. The squeeze machine is just one way to do pressure. Other simpler ways are things like bean-bag chairs, weighted vests, and weighted blankets.

Medscape: Can you describe the squeeze machine?

Dr. Grandin: It works like a squeeze chute used to hold cattle for veterinary work. You get on your hands and knees. It's got 2 foam-rubber-padded side panels and works with compressed air; when I pull a handle, it squeezes me. I first got interested in this when I was 16 because the anxiety attacks were just crippling me, and I noticed that when they put the cattle in their squeeze chute for vaccination, they sometimes tended to relax. So I went and tried the squeeze chute out at the ranch and found that it did kind of relax me.

Pressure is calming, and many people with autism will do things like wear tight belts or very tight clothes. Of course, the professionals wanted to take the squeeze machine away from me. Mr. Carlock said to me, if you want to find out why it's relaxing, you're going to have to study the science, and he got me looking up abstracts. Instead of taking the squeeze machine away, which is what the other professionals wanted to do, he used it as a way to motivate an interest in science.

Supported by an independent educational grant from Janssen

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