IN THE SPOTLIGHT

Tony & Temple : Face to Face

This article was originally published in the January-February 2000 edition of Autism Asperger’s Digest published by Future Horizons. For more information on the Digest visit www.autismdigest.com

Ed. Note: The following interview was taped live on December 9^th 1999, at a presentation Temple was giving in San Francisco, for Future Horizons. The audience loved it, and heard many personally revealing and sometimes humorous glimpses into Temple’s life. It was a rare chance to see Temple herself laugh . . . Enjoy!

Temple Grandin’s autobiography, Emergence: Labeled Autistic and her subsequent book, Thinking in Pictures, together contain more information and insights into autism than I have read in any textbook. When I first heard one of her presentations, I was immediately aware of her forthright personality. The whole audience was enthralled with her knowledge.

I was delighted to be asked to interview Temple, as it provided an opportunity to seek her counsel on so many topics. She has a remarkably endearing personality and during the interview in San Francisco she entranced an audience of over 300 people. The applause at the end was loud and prolonged.

Temple is my hero. She has my vote for the person who has provided the greatest advance in our understanding of autism this century.

Dr. Tony Attwood

Tony: Temple, you were diagnosed as autistic when you were 15 years old. How did your parents present that to you and what did you feel about yourself when you got that information?

Temple: Well, they never really presented it properly. I sort of found out about it in a round about way from my aunt. You’ve got to remember that I’m 53 years old and that was a Freudian era, a totally different time. Actually, I was kind of relieved to find out there was something wrong with me. It explained why I wasn’t getting along with the other kids at school and why I didn’t understand some of the things teenagers did - like when my roommate would swoon over the Beatles. She’d roll around on the floor squealing in front of the Ed Sullivan Show. I’d think, yeah, Ringo’s cute, but I wouldn’t roll around on the floor with him . . .

Tony: So, if you had the job of explaining to a 14 or 15 year old that you have autism or Asperger’s Syndrome, how would you go about it today?

Temple: I think I might give them your book and my book . . . Well, I’d probably just explain it in a technical manner, that it’s immature development in the brain that interferes with getting along socially. I’m basically a “tekkie” - that’s the kind of person I am. I want to fix things. With most of the things I do, I take the engineering approach; my emotions are simple. I get satisfaction out of doing good work. I get satisfaction when a parent comes to me and says “I read your book and it really helped my kid in school.” I get satisfaction from what I do.

Tony: I seem to remember when you were very little and very autistic, there were certain autistic behaviours you really enjoyed doing. What were they?

Temple: One of the things I used to do was dribble sand through my hands and watch the sand, studying each little particle like a scientist looking at it under a microscope. When I did that I could tune the whole world out. You know, I think it’s OK for an autistic kid to do a little bit of that, because it’s calming. But if they do it all day, they’re not going to develop. Lovaas’ research showed that kids need 40 hours a week connected to the world. I don’t agree with 40 hours a week of what I call “hard core applied behaviour analysis”, just done at a table. But I had 40 hours a week of being tuned in. I had an hour and a half a day of Miss Manners meals where I had to behave. The nanny played structured children’s games with me and my sister that involved a lot of turn taking. I had my speech therapy class every day . . . these things were very important to my development.

Tony: A moment ago you used the word “calming”. One of the problems that some persons with autism and Aspergers have is managing their temper. How do you control your temper?

Temple: When I was a little kid, if I had a temper tantrum at school, mother just said, “You’re not going to watch any Howdy Doody show tonight.” I was in a normal school - 12 kids in a class, a structured classroom. There was a lot of coordination between school and home. I knew I couldn’t play mom against the teachers, or vice versa. I just knew if I had a temper tantrum there wouldn’t be any TV that night. When I got into high school and kids were teasing me, I got into some rather serious fist fights. I got kicked out of the school for that - it was not good. And then when I went away to the boarding school and I got into some fist fights, they took away horseback riding privileges. Well, I wanted to ride the horses and after I had horseback-riding privileges taken away once, I stopped fighting. It was just that simple.

Tony: But can I ask you, personally, whom were you fighting, and did you win?

Temple: Well . . . I usually won a lot of the fights . . .

Tony: So, were you fighting the boys or the girls?

Temple: Both - the people who teased me.

Tony: So you’d actually lay out the boys?

Temple: Oh, I remember one time I punched a boy right in the cafeteria . . . And then when I stopped fighting, the way I dealt with it was that I would just cry, because I needed to release my emotions in some way. That’s what happens now - I just cry, because it’s my way of preventing fighting. I also avoid situations where people are blowing up and getting angry. I just walk away from it.

Tony: I’d like to ask you a technical question. If you had $10 million for research and you were either going to create research in new areas, or support existing research, where would you spend that money?

Temple: One of the areas I would spend it on is really figuring out what causes all the sensory problems. I realise it’s not the core deficit in autism, but it’s something that makes it extremely difficult for persons with autism to function. Another really bad thing, especially in the high functioning end of the spectrum, is that as the people get older, they get more and more anxious. Even if they take Prozac or something else, they’re so anxious, they have a hard time functioning. I wish there was some way to control that without them drugging them totally to death.

Then you get into issues like, should we prevent autism? I get concerned about that because if we totally get rid of the genetics that cause autism, then we’d be getting rid of a lot of talented and gifted people, like Einstein. I think life’s a continuum of normal to abnormal. After all, the really social people are not the people who make computers, who make power plant, who make big hotel buildings like this one. The social people are too busy socialising.

Tony: So, you wouldn’t fund getting rid of Asperger’s Syndrome. You don’t see it as a tragedy?

Temple: Well, it would be nice to get rid of the causation for the severely handicapped, if there was a way we could preserve some of the genetics too. But the problem is that there’s a lot of different interacting genes. If you get a little bit of the trait, it’s good; you get too much of the trait, it’s bad. It seems to be how genetics works. One thing I’ve learned from working with animals, when breeders over select for a certain trait, you can get other bad things that come along with it. For example, with chickens, they’re selected for fast growth and lots of meat, but then they had problems with the skeleton not being strong enough. So they bred a strong skeleton back into the chicken. And they got a big, rude surprise they weren’t expecting. They ended up with roosters that the breeding hens were attacking and slashing. When they bred the strong legs back in, it bred out the rooster’s normal courtship behaviour. Now, who would have predicted this strange problem? That’s the way genetics works.

Tony: Temple, one characteristic you have is that you make people laugh. I think sometimes you may not intend it, but you have a great gift of making people laugh. What makes you laugh? What’s your sense of humour?

Temple: Well for one thing, my humour is visually based. When I was telling you about the chickens, I was seeing pictures of them. One time I was in our department conference room at the university. They have framed pictures of all the old department heads, in heavy, thick wooden frames. I looked at that and said, “Oh, framed geezers!” At another faculty meeting I was looking at them, and I wanted to burst out laughing, thinking about the framed geezers. That’s visual humour.

Tony: And, you have a story about pigeons?

Temple: Oh yeah, the pigeon stuff. Wayne and I got rolling around on the ground one night about pigeons. The Denver airport’s got a lot of pigeons and they don’t clean up the dead pigeons in the parking lot. I got to thinking about the places I could put the dead pigeons . . . like a pigeon hood ornament for all the city of Denver maintenance trucks. Then they have this place they call the pigeon drop zone. In the parking garage there’s this one concrete beam where they all nest . . . well you don’t want to park in the pigeon drop zone. Every time I walk back to the parking garage, I’m wondering what big fancy expensive $30,000 SUV just parked in the pigeon drop zone.

Tony: So, that explains why sometimes you may burst into laughter and other people have no idea what’s going on . . .

Temple: That’s right, it’s because I’m looking at a picture in my mind of something that’s funny . . . I can just see that pigeon hood ornament on a bright yellow city of Denver maintenance truck - it’s just very funny.

Tony: About your family: your mother was a very important part of your life. What sort of a person was she? What did she do personally that helped you?

Temple: She kept me out of an institution, first of all. You’ve got to remember this was 50 years ago; all of the professionals recommended that I be put into an institution. Mother took me to a really good neurologist and the neurologist recommended the speech therapy nursery school. That was just a piece of luck. The nursery school was run by two teachers out of their house. They had six kids and they weren’t all autistic. They were just good teachers who knew how to work with kids. Then she hired the nanny, when I was three, and the nanny had had experience working with autistic kids. I have a feeling the nanny might have been Asperger’s herself, because she had an old car seat out of a jeep that she had in her room - it was her favourite chair . . .

Tony: How else did your mother help you as a person herself?

Temple: Well, she worked with me a lot. She encouraged my interest in art; she did some drawing things with me. She had worked as a journalist, putting together a TV show on retarded persons and then another TV program on emotionally disturbed children. As a journalist, she had gone out and visited different schools. So when I got into trouble in 9^th grade for throwing a book at a girl - I got kicked out of the school and we had to find another school - she found a boarding school that was one of the schools she had visited as a journalist. If she hadn’t done that for me, I don’t know what would have happened.

Once I got into the boarding school, that’s when I found people like my science teacher and my Aunt Ann, out on the ranch, who was another important mentor. But there were a lot of people along the way that helped me.

Tony: What about your father? Describe your father and grandfather.

Temple: My grandfather on my mother’s side invented the automatic pilot for airplanes. He was very shy and quiet; he wasn’t very social. On my father’s side of the family we have temper problems. My father didn’t think I would amount to very much. He wasn’t very social either.

Tony: How do you relax? What do you do to calm down at the end of the day?

Temple: Before I took medication I used to watch Star Trek - I was very much a Trekkie. One of the things I liked, especially about the old classic Star Trek, was that it always had good moral principles. I’m very concerned today about all the violent stuff. It isn’t so much how many guns are going off in the movies, it’s that the hero doesn’t have good values. When I was a little kid, Superman and the Lone Ranger never did anything that was wrong. Today, we have heroes that do things like throw the woman into the water or the woman ends up getting shot; the hero is supposed to be protecting the woman, not letting her get shot. You don’t have clear-cut values. And this worries me, because my morals are determined by logic. What would my logic and morals have become if I hadn’t been watching those programs, with clear-cut moral principles?

Tony: As we turn to the next millennium, in another 100 years time, how do you think our understanding of autism will change?

Temple: Oh, I don’t know . . . we’ll probably have total genetic engineering and they’ll have a Windows 3000 “Make a Person” program. They’ll know how to read DNA code by then. We do not know how to do that right now. Scientists can manipulate DNA - take it out and put it in - but they cannot read the four-base source code. One hundred years from now they’ll be able to do that. And, I don’t think there will be autism, at least not the severe forms of it, because we’ll be able to totally manipulate the DNA by then.

Tony: There are a number of persons we’ve learned about now with autism or Asperger’s Syndrome who have written their autobiographies. Who are your heroes in the autism/Asperger’s field that have the condition themselves?

Temple: I really look to the people who have made a success of themselves. There’s a lady named Sara Miller; she programs industrial computers for factory automation. There’s a lady here tonight, very beautifully dressed, that has her own jewelry business, and she told me she has Asperger’s. Somebody like that is my hero. Somebody who’s making a success of themselves, who is getting out there and doing things.

Tony: How about famous people historically, who would you think had autism or Asperger’s Syndrome?

Temple: I think Einstein had a lot of autistic traits. He didn’t talk until age three - I have a whole chapter about Einstein in my last book. I think Thomas Jefferson had some Asperger’s traits. Bill Gates has tremendous memory. I remember reading in an article that he memorised the whole Torah as a child. It’s a continuum - there’s just no black and white dividing line between a computer tekkie and say, an Asperger’s person. They just all blend right together. So if we get rid of the genetics that cause autism, there might be a horrible price to pay. Years ago, a scientist in Massachusetts said if you got rid of all the genes that caused disorders, you’d have only dried up bureaucrats left!

Tony opened up the interview to questions from the audience. Here’s one of the best:

How did you realize you had control over your life?

Temple: I was not a good student in high school; I did a lot of fooling around. Being a visual thinker, I had to use door symbolism - an actual physical door that I would practice walking through - to symbolise that I was going on to the next step in my life. When you think visually, and you don’t have very much stuff on the hard drive from previous experiences, you’ve got to have something to use as a visual map. My science teacher got me motivated with different science projects and I realized if I wanted to go to college and become a scientist, I’d have to study. Well, one day I made myself walk through this one door and I said, “OK, I’m going to try to study during French class”.

But there was a point where I realised that I had to do something about my own behaviour. And I experienced some times that were not all that easy, like when my boss got all over me for being a total slob. There were mentors who forced me - and it wasn’t always pleasant - but they forced me to realise that I had to change my behaviour. I just couldn’t go around and be a slob; I had to do something about changing that. I’ve read some of the early writing on autism - from Kanner, I believe - that the autistic person who finally succeeds, realises that they have to actively try to work on their behaviour. They just can’t be sitting around complaining about things. They have to actively try to change things. Good mentors can help you do that.

Temple is the author of two books on autism: Emergence: Labeled Autistic and Thinking in Pictures. She is a world-renowned speaker on autism spectrum disorders. Tony Attwood is a clinical psychologist, practicing in Australia; he specialises in Asperger’s Syndrome and has become one of the foremost authorities on the issue. He is a frequent presenter in the US and is the author of Asperger’s Syndrome : A Guide for Parents and Professionals. All three books are available from Future Horizons.

Reprinted here with the kind permission of Dr. Tony Attwood. (Thank you!)

His website, with articles, books, and media resources relating to Asperger’s Disorder/Autism is located at http://www.tonyattwood.com.au/

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