Temple Grandin, a professor of animal science at Colorado State University, was one of the first autistic people to chronicle her life with the condition— and is now a bestselling author and well known for her innovative designs for handling livestock. Recently portrayed by Claire Danes in an Emmy-winning HBO movie about her life, Grandin spoke to TIME about her latest book, The Autistic Brain.
What most concerns you about the way we work with autistic children today?
I’m really concerned about getting people on the higher end of the spectrum good jobs. Autism is a very diverse disorder ranging from someone who remains nonverbal with a very severe handicap to mild autism. And really, half the people in Silicon Valley have got some mild autism.
But I’m seeing too many kids today that are really talented and on the high end of the spectrum kind of going nowhere because their skills haven’t been developed. They haven’t learned how to work. When I was 13, I had a sewing job and when I was 15, I cleaned horse stalls.
Do you think the label of autism is hurting these kids, making them feel they are limited in a way that someone without the diagnosis might not be?
I think sometimes parents and teachers fail to stretch kids. My mother had a very good sense of how to stretch me just slightly outside my comfort zone. No surprises. You can’t chuck them in the deep end of the pool, that doesn’t work but she kind of just knew, you know, to get me to do things, like serve hors d’oeuvres at my mother’s parties and just bow and shake hands with the guests.
You write a bit about the controversy over how to define autism and how it has changed over the years in psychiatry’s diagnostic book, the DSM.
It’s not like having a diagnosis for tuberculosis. In fact, when I worked on the [part of the book about the] history of the DSM and I saw how it was laid out, how it changed over the years, it’s really pretty shocking. It’s probably half-based in science and half-based in doctors sitting around a conference room table in a hotel squabbling.
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Do you think there is more autism now than there used to be or are we just better at recognizing it?
I think on the mild end of the spectrum most of it’s increased detection because I’ve worked with so many folks my age that I know are on the spectrum that are undiagnosed. And I think there’s some mental retardation—what used to be labeled mental retardation— that has gotten labeled autism. But I think there’s some actual severe autism that actually has increased.
Sensory issues, like being disturbed by sudden, loud noises or itchy clothing are a big part of your experience as an autistic person. Why do you think sensory issues have not received as much study as other aspects of autism?
I think that’s extremely important. They’re all extremely variable from nuisances to being completely debilitating and they can affect all levels of the spectrum. One kid will have a sensitivity problem with the flicker of fluorescent lights and you can get that problem in some dyslexics, [and in] some [with] ADHD, or a kid might have a problem with loud noise like in the cafeteria, or he might have problems with scratchy clothes. It’s extremely variable.
Do you think sensory issues are at the root of what makes autistic people different?
I think the core criterion is the social awkwardness, but the sensory issues are a serious problem in many, many cases of autism and they make it impossible to operate in the environment where you’re supposed to be social. How can you be social if you can’t tolerate those five TVs that are in that bar?
Are the social problems a consequence of kids tuning out very early on because they are overwhelmed?
That might contribute to it [and] I think my top priority for research is sensory. We need to find some good treatments.
What helps you to cope?
My problems are sort of more on a nuisance level. I can’t stand scratchy clothes, I’ve got to have soft kinds of cotton against my skin and I don’t know why some 100% cotton t-shirts itch and others don’t, it has something to do with the weave. I make sure I wash all the underwear that goes against my skin before I wear it, however I wear it inside out.
And then on noise sensitivity, one of the best ways to try and desensitize that is to have a child initiate the sound. Like one of the bad ones is the buzzer on the scoreboard in the gym so have a child go in the gym and turn it on, maybe with headphones on first, then gradually take the headphones off and he initiates the sound — that helps. Start the sound really faint[ly] and then gradually make it louder. That’s another thing you can do.
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Tell me about what it’s like to be a visual thinker.
My mind sort of works like a search engine. You ask me something and I start seeing pictures. Why don’t you ask me a key word, something that’s not in the hotel room and not something common like house or car and I’ll tell you how my mind accesses the information?
How about a thermometer?
I’m seeing a big thermometer that we had outside our window of my childhood house. I’m seeing a thermometer that a poster has been painted to show how much money has been given to United Way. Now that’s got me off the subject of thermometers and now I’m thinking about charities and each one of those things is coming up as a picture.
You had your brain scanned, which must be a pretty scary and difficult experience.
I’ve been in scanners a whole bunch of times and they do give you earplugs since it’s quite noisy, but getting the pictures is just really fascinating.
The scan done out in Utah showed that in the parietal area of my brain, [much of it has been taken over by a large fluid filled cavity], my math department’s full of cerebral spinal fluid. That would account for [my] being bad in math. Then I also have some huge gigantic visual circuits. That would explain my visual thinking.
Of course, that I really found fascinating. The fusiform gyrus, the circuits involved with face recognition — those [were] abnormal and then another finding was that my amygdala, the fear center, was much larger than normal and that probably explains why I was so anxious and had so many panic attacks, although now I control them with anti-depressants.
You have often pointed out the strengths of the autistic mind, while many people focus only on deficits.
There definitely are some strengths. You see, there’s a point where mild autism is just a personality variation. There’s no black and white dividing line between autism and non-autism from the mild end of the spectrum. And some people on the mild end of the spectrum have extreme talent areas in things like computer programming, mathematics, art, design, graphics, writing skills, and I’m a big believer on building on the child’s strengths.
Do you think if people try to get rid of “autistic genes” those talents would be lost?
You’ve got to think about it. Who do you think made the first stone spear? It certainly wasn’t the social yakkity yaks around the campfire and you wouldn’t even have a recording device to record this conversation on if there wasn’t somebody mildly on the autism spectrum that invented it.