Interview w/ Temple Grandin on developing potential

The Autism Women’s Network interviews Temple Grandin on developing an autistic child’s potential.

[Music]

Tricia Kenney: Hello, everyone, and welcome to AWN radio. My name is Tricia Kenney and it is Monday, December 27, 2010. I wanted to let everyone know that Sharon daVanport will not be hosting today. She’s a little bit ill and just a little bit under the weather, which seems to be really going around with everyone right now. So we’re hoping that she feels better and that her family feels better, and that she’ll be with us for the New Year’s Eve show that we’ll be doing.

That will be on the 31st, and we’ll just be going over the events over the past year—both in the autism community and around the world. It should be a fun show, and there were a lot of exciting things that happened in 2010. Hard to believe that it’s going to be 2011 so soon. In any case, one of the big things that happened this past year had to do with our guest today. Our guest today is Temple Graqndin. She had her HBO movie come out and won some awards, so it was very, very eventful for her.

We are waiting for her to call in right now. There was a little bit of a mix-up with the phone number, but she hopefully got our message and will be dialing in soon. In the meantime, I’m going to go ahead and play the theme music real quick so that I can switch over to the other line for her, and then I’ll be joining you back in just a moment. Thank you for your patience, and just bear with us. We’ll get her on here. Just hold on. [Laughter]

[Music]

Okay, we are back. Thank you for your patience. I have Temple on the line now; there was a little misunderstanding [of?] the time, and so we got her on the line. So I just want to go ahead and bring her right in. Hi there, Temple.

Temple Grandin: Hi. How are you doing?

Tricia Kenney: Good. I’m so glad you were able to join us today, and I do apologize for that little mix-up. I wanted to just ask if you had a good Christmas.

Temple Grandin: I certainly did; yeah.

Tricia Kenney: And if you have any plans for New Year’s.

Temple Grandin: Well, we’re still having a terrible snowed-in problem here in New York, with the three airports shut down until 4:00 this afternoon.

Tricia Kenney: Oh, my goodness. Yeah. I was seeing everybody posting about the snow that hit.

Temple Grandin: Yeah.

Tricia Kenney: I didn’t get to see much of that; I live in Wisconsin.

Temple Grandin: Yeah.

Tricia Kenney: Luckily, we haven’t been really hit that hard this year, but a lot of people have. Are you stranded there now?

Temple Grandin: Well, I got stranded for two days.

Tricia Kenney: Wow.

Temple Grandin: I’ve got a flight out that goes tomorrow, and so far that flight’s operating.

Tricia Kenney: Today we wanted to talk about tapping into your child’s potential, especially in regards to autism. Now, what do you think of when somebody asks you about their child’s potential? Do you think there’s any limitations?

Temple Grandin: The thing is, autism’s a really broad spectrum. At one end of the spectrum, you’ve got a mild Asperger’s, and with the new diagnosis proposals, that’s going to be merged into the autism diagnosis. So at one end, you got a brilliant Asperger’s working out in Silicon Valley, a geek or a nerd with no obvious speech delay. Then at the other end of the spectrum, you’ve got somebody who’s going to remain nonverbal.

So there’s different levels of accomplishment that people can do. You have somebody smart, the geek end of the spectrum, you need to work on developing whatever their strength is. And skills tend to be uneven. You might have a person who’s really good at art. When I was a child, my ability in art was really encouraged, but I was weak in math. Another kid might be really super good in math, but weak in reading. Another kid may have good verbal skills. You need to build up the area of strength. Build up that area of strength into things that can be careers.

Tricia Kenney: When a child is going through the schooling process, let’s say, a lot of times there isn’t that leeway. They expect you to be good in reading, math, science and art and gym, and you get graded accordingly. You just feel like a failure if you’re not good in all of those subjects.

Temple Grandin: I was not good in a lot of things, but I was good in art. And that was my one area of really good accomplishment. I think it’s a shame that a lot of schools are taking these hands-on classes out of the schools, like art and wood shop and welding and things like that. That’s where a lot of these quirky, nerdy kids can really excel. I’m seeing a lot of those kids just getting addicted to video games now and just getting in trouble, because they didn’t have a science teacher that motivated them to study.

Tricia Kenney: Right. What’s really sad, too, is when you have music class or art class, that really helps you to learn better in other classes as well.

Temple Grandin: Yeah.

Tricia Kenney: It’s really intertwined in the learning process. I think they’re doing a huge injustice to children nowadays when they are just completely abandoning any of those services in school now.

Temple Grandin: Well, I think that…You take the kids that have uneven skills. Some of those hands-on classes are the classes that they excel at. Then you have other kids that are the mathmatics smart kids, and that kid, if he’s in fourth grade, may need to be three grades ahead in math, but he may need some special ed and some tutoring in reading. You always get back to the uneven skill thing.

Now, of course, you’ve got the other end of the spectrum, where they’re going to remain nonverbal. But if you work with them, then tney’re going to be able to do a lot of basic living skills. Some of the nonverbal people can learn to read, even though they don’t talk. You can read Tito Mukopadhyay’s book: How Can I Talk if My Lips Don’t Move? to learn more about that. It’s a very, very big spectrum.

I can’t emphasize enough the importance of early educational intervention. You have a child that’s not talking at age two, the worst thing you can do is nothing. You’ve got to spend 20 or 30 hours a week of one-to-one teaching with that child.

Tricia Kenney: Right. And even if they aren’t verbal, if they don’t communicate in a verbal way, there are so many ways nowadays to communicate without having to be verbal. I think that really, if you are in that situation, it doesn’t necessarily mean that your career choices or that your lifelong prospects are nil. You can do any sort of computer work or stuff where you can work out of your home or if you have a place of employment, and hopefully there will be places of employment that let you use that assistive technology—

Temple Grandin: That’s right.

Tricia Kenney: —in the future, so that you aren’t so limited.

Temple Grandin: That’s right.

Tricia Kenney: Something I even noticed with my own children: One of my sons really didn’t talk much. He talks more now. He’s starting to use more conversation-type talk. But even so, he can read very well. He can read very well and he can type very well, and he does really well on the computer. And he’s smart. He figures out [how to do stuff?].

Temple Grandin: Some of the individuals that are nonverbal can read and can type, and I think keyboards need to be introduced really young, so they’ve got an opportunity to learn how to type. You start out just teaching nouns, maybe start out with food items, something that the individual’s going to be interested in.

Tricia Kenney: Right. My son knew how to type “train” before he could type anything else. [Chuckles]

Temple Grandin: Yeah, because that’s something he’s interested in.

Tricia Kenney: Exactly. It’s just like: “Okay, let’s try to work on some smaller words, too, so you can broaden your range of what you’re looking for online.”

Temple Grandin: That’s right.

Tricia Kenney: But I think it’s really important that we do stress to parents that even if your child isn’t verbal, even if the doctor said he’s going to need care for the rest of his days and won’t be able to get married or have a job or do anything like that, I think a lot of people need to ignore that when they get that sort of comment from a specialist or professional.

Temple Grandin: [The thing is?], when a child’s very young, you can’t really tell how severe they are. When I was two and a half years old, three years old, I had no language. I wasn’t fully verbal til age four. I looked really severe. Now, one thing that was good is I did not have epilepsy. That was one of the things they were able to check: there was no seizure activity. And if there’s no seizure activity, that’s usually a good sign.

Tricia Kenney: Right, right. It’s sad when people not necessarily give up, but they are depressed and sad, thinking 20 years ahead, and they don’t necessarily need to do that. Focus on the now and keep fighting and keep working, and you just never know.

Temple Grandin: Whatever you keep working on, what you want to try to do is find stuff where you start to get progress. You can get into problems with sensory overload. I had problems when the school bell went off; that hurt my ears. There are some children and adults that if you take them in a noisy shopping center or a big supermarket, they just can’t tolerate all that noise and commotion.

Tricia Kenney: Right.

Temple Grandin: And if they get into that kind of sesnory overload situation, they’re not going to be able to function. Then you’re likely to have temper tantrums and meltdowns, because they feel like they’re inside the boiler at a factory or inside the speaker at the rock concert.

Tricia Kenney: Right, right. And of course, how is that going to be a learning environment for that child, when their body is so focused on everything else?

Temple Grandin: Yeah. It can’t be. I went to school in an old, structured classroom, multi-classroom. 12-13 kids in the class with an older, experienced teacher. Everybody worked on doing he same things at the same time. The kind of big, noisy classroom with 30 kids doing diffeent things, I would’ve had problems functioning in that when I was a little kid.

Tricia Kenney: Right. Well, a lot of people are fighting for inclusive classrooms.

Temple Grandin: And it’s the right thing to do. For some, it’s the right thing to do. So much depends upon the particular school and the particular situaion, so I always ask parents, whatever situation their child is in, I go: “Is he progressing?”

Tricia Kenney: Right.

Temple Grandin: “Is he progressing?” And whatever educational situation you have him in, if he’s progressing, then I might suggest some things to add to it. But I find it so situation-dependent. You’ve got one kid mainstreamed who’s doing great; you’ve got another kid mainstreamed that’s a mess and they’re just letting him sit in the corner and not do anything. It’s so variable from school to school. It’s particular teachers, particular principals, particular places—that’s what seems to make the difference.

Tricia Kenney: Right. And again, as we find out more and more as we go along on this journey, there’s no blanket solution.

Temple Grandin: No. The one thing that every expert will agree on is that the little kids, two, three and four year olds that are nonverbal need 20 hours a week of one-to-one teaching with an effective teacher that gets progress. Now, people are going to argue over what exact teaching method you use, but everybody will agree that these little kids need 20 or 30 hours of one-to-one face time with an experienced teacher. I ask parents in that situation: “Is your child making progress?” Because you get a teacher that’s not right, they might be driving the kid into sensory overload, and that’s like pounding on a brick wall. You’re not going to get any progress.

Tricia Kenney: So what can someone do if they are in that situation? If they happen to be in first grade and it’s just going down the tubes—everything all the sudden is just awful and they’re not making progress?

Temple Grandin: Well, then you may have to do something else, then. Okay, like the situation where the mainstream situation doesn’t work, and then you go over to another school and everything works just fine. And then some parents have chosen to homeschool kids. But if they do that, they need to make sure you set up enough time so they can interact with normal kids and play games with normal kids and not be isolated from normal kids.

Tricia Kenney: Umhm. Yeah. I think we learn so much from just being around other people.

Temple Grandin: That’s right.

Tricia Kenney: It makes a huge difference. Just for example, one of my sons went into Head Start—this was several years back—and they didn’t have a separated special needs situation. So he was just right in there with everybody else, even though he really didn’t seem to notice anybody else existed there. [Laughter]

Temple Grandin: Yeah. And that didn’t work, and there might be some other Head Start where it works just fine.

Tricia Kenney: It ended up working; it ended up working.

Temple Grandin: It ended up working? Okay, well, good. It ended up working. Great.

Tricia Kenney: Because by the end of that school year, he was interactive with the other kids; he was initiating play with the other kids.

Temple Grandin: Good.

Tricia Kenney: He was participating in group activities in the classroom. It was a huge difference. Sometimes when it seems like it would be an imposaible situation, it ends up being very instrumental in the progress of that child.

Temple Grandin: That worked. You see, again, it gets back to the particular situation, the particular teachers, the people involved, and that’s a lot to do with whether it works. And if you asked me: “Private school versus a public school?” I don’t think that matters. It’s the particular school and the particular teachers and that particular situation seems to be one of the biggest factors in whether or not things work.

I’ve found when you get out in the rural areas, the rural areas either tend to be just wonderful or maybe it doesn’t work at all, because they’re even more dependent on particular people in a particular place. But there’s some rural schools out in the countryside that they’re excellent.

Tricia Kenney: Umhm. Yeah. And again, it’s just luck of the draw.

Temple Grandin: Sometimes it is, and everyone’ll agree, with these little kids they’ve got to get 20 or 30 hours a week of one-to-one. And then, as the kids get a little older, you start to have ones where: “Oh, this kid’s really a genius in math” or “This kid’s really good at art.” Then you have others, maybe they remain nonverbal, and then you’ve got some, unfortunately, that have got epilepsy and they’ve got a lot of other medical problems. They’re not going to learn to read. But if you work with them, they can learn to do simple life skills, like dressing themselves.

One thing I’m getting concerned about is I have seen really smart, nerdy kids on the high end of the spectrum, where they aren’t pushed enough. They don’t know how to order food in a restaurant. They’re combing their hair with a fork in a restaurant, because they weren’t just taught not to do these things. Everything has to be taught in the specific situation, and I discuss that in a lot of my talks and [The Way I See It] book. You’ve got to teach things by specific example. Okay, what’s table manners? Well, each time the child makes a mistake in table manners, you correct it. You say: “Now, don’t comb your hair with your fork. Keep it down on the plate.” Or: “You use your fork to eat the mashed potatoes, not your hands.”

Tricia Kenney: Right.

Temple Grandin: And then each one of those little corrections just goes into the Good Table Manners file in the kid’s brain. Everything is learned by specific example. It’s bottom-up thinking; it’s not top-down. They’ve got to learn everything [by] specific example. How do you learn not to run across the street? Well, you’ve got to be taught at school, at the library, at the Jones’ house, your own house, at Granny’s house, that you look both ways before you cross the street. So to generalize that, you’ve got to teach it in a whole lot of different places. To teach number contexts: count pens, count toy dinosaurs, count pennies, count bottlecaps. They’ve got to learn that numbers apply to many different things.

Tricia Kenney: Right, right. And I think we get caught up sometimes in the care and the presusre and the paperwork and all these appointments and all this stuff, and it gets very exhausting. Then we’re also pummelled with all these different therapies that are out there, and all these different things that we’re supposed to be doing with our children, and it gets overwhelming. And then we feel like we’re bad parents.

Temple Grandin: Well, I try to give simple, practical advice in both of my books. The Way I See It, that has a lot of practical advice on making decisions on things like therapies and medications. You’ve got to think logically. There are a lot of people out there selling a lot of stuff. And then my other book is [Thinking in Pictures.] That gives a lot of insight into how people with autism think, and jobs, how I started out my career one little freelance job at a time. I think a lot of parents’ll find both those books really helpful.

There’s a lot of people selling a lot of stuff. And they’ll say: “Oh, if you don’t do my treatment, your kid’s going to not develop.” Well, I have found when it comes to teaching methods, so much of it depends upon who that teacher is. You’ve got a good teacher, I don’t care what school of theory that teacher belongs to if that teacher’s going to be good. Because the good teachers are more flexible. I find that ABA starts to look like Floortime or some other therapy, and Floortime or Pivotal Response starts to look like ABA. The good teachers are not rigid.

Tricia Kenney: Right.

Temple Grandin: People have asked me about Montessori schools. There’s been some kids that have done well at Montessori schools; others haven’t. I think so much of it gets back to the particular teacher and the particular situation, because there’s certain good teachers that just know how to work with little kids, and I think it’s an instinct that they’re born with.

Tricia Kenney: Yeah. I think so, too. I think that it really comes through when you see the teacher taking an interest in what that child’s personality is.

Temple Grandin: Oh, well, let’s take the first word that was typed was “trains.” Well, then, let’s teach reading with trains. Let’s do mathematics with trains; learn about the history of the railroad. Take that thing the kid’s interested in and use it to motivate. Get some associative link back to the train interest. And a lot of these interests start out as sensory: he likes trains because he likes to watch the fast movement. Then there’s other kids that can’t stand trains and they’re afraid of the fast movement.

But it’s normal for kids on the spectrum and adults to get their favorite interests, and you somehow have a connection. Okay, let’s say all he wants to do is draw pictures of trains. Well, let’s do a picture of the station. Okay, let’s do a picture of a place a train travels to. There you’re getting an associative link back to his favorite thing: trains.

Tricia Kenney: Okay. That’s really good, and that kind of leads me into: What do parents do when your child has an obsessive interest? A lot of parents are told: “You have to stop it.”

Temple Grandin: Oh, no. I wouldn’t totally stop it. I wouldn’t totally stop an obsessive interest, unless it’s something totally inappropriate like guns. I don’t really [want?] an interest in guns. But if it’s something like trains or airplanes or dinosaurs—those are some of the really common interests—what you want to do is take that motivation for that fixation and broaden it out.

Let’s say all the kid does is he does pictures of trains. Well, then, we’re going to do pictures of where trains travel to. Maybe do some pictures of some of the people that go on the train. You see, you have an associative link back to trains. Well, do a mathematical problem with trains. You can do the same thing with dinosaurs. We read books about dinosaurs.

In other words, use that motivation of that fixation to motivate learning. And it’s associative thinking, so as long as something even has a remote association to trains and you can show the kid how it’s associated, then you’re tapping into the motivation that that fixation gives you. So what you want to do with the fixations, you don’t stomp them out, because these are things that can turn into careers and hobbies. What you do is you broaden them. And you broaden them into more areas, so they’re not so fixated. I wanted to talk about cattle chutes all the time. Well, people don’t want to talk about cattle chutes; they want me to design them.

Tricia Kenney: Right. What about when that interest is, say, video games? Because so many kids are so immersed?

Temple Grandin: I think you have to limit that. Now, there are some kids that could learn how to program a game. And then I’d limit the video game playing to an hour a day. They just get totally fixated on it. Now, maybe, you might be able to use the subject of the video game to teach lessons, but the actual video game playing, it’s just got to be limited, especially in little kids.

I could’ve been one of those video game addicts. If video games had been around when I was a child, when I was a teenager, I would’ve wanted to play video games; I would not have wanted to take care of the horses and build things. I’m seeing a lot of kids becoming video game addicts, and for every kid that can actually learn how to program a game and go into that industry, there’s ten others that don’t have the right type of art skills or the programming skills. I’m good at art, but the kind of art you need for video games, I wasn’t good at, and I couldn’t do programming. I wanted to, but I didn’t understand it. So I could’ve seen myself as being one of those video game addicts. Video game playing just needs to be limited: an hour a day. What they call idle screen time. Now, if they want to spend six hours a day programming a game, fine, but not playing it.

Tricia Kenney: Right, right.

Temple Grandin: We’ve just got to limit the video game playing. We’ve got to get interests…we need to start thinking about what the kid’s going to do when he grows up. Well, he can’t be a beta tester for a video game company. Every teenager wants to, there’s thousands of kids that want to do that. That’s not a viable option for a job. And for every 20 video game addicts, there’s only about one that would actually be capable of going into the industry. And if they’re capable of going into the industry, fine. That’s great. And the two main jobs are programming and artwork, but the video game industry’s very crowded, very difficult to get into, and you have to be the very best.

Tricia Kenney: Yeah, yeah, definitely. And it’s something that we see our kids are so good at, so naturally good at, and you’re just like: “Wow! That’s amazing!” As an adult, we try and do some of these things that our kids are doing, and your hand-eye coordination is…

Temple Grandin: And video games teach hand-eye coordination, but the problem is, they teach you how to be a fighter pilot, but most people arent’ going to be a fighter pilot. We’ve got to start figuring out how to broaden this out. Could this child learn programming? You get out in the Silicon Valley area, the parents that are in the computer [unknown] teach their kids how to program. Great, let’s teach the kid how to make a game.

But then there’s a lot of kids that are video game addicts, and they could never learn how to program a game. It’s just like TV watching. I was limited when I was a child to an hour a day of TV watching, and I think video game playing has got to be limited. We’ve got to start teaching kids work skills. When they get into middle school, they need to start doing little jobs. When I was 13, 14 years old, I had a little sewing job, where I did freelance hand sewing for a lady that worked out of her house. When I was 15 I made the gate that’s shown in the HBO movie. I was taking care of nine horses. I was getting work skills.

Let’s say a kid is interested in computers, well, he’s 13 years old, 12 years old, he can become the neighborhood computer fix-it guy. He’s the one that fixes other people’s computers when they crash, because I want to start teaching job skills. Walking dogs would be another thing that they could do. Mowing lawns. Kids have got to start learning these job skills. You’ve got to show up on time; you’ve got to mow Mrs. Jones’s lawn every Monday afternoon, unless it’s raining.

Tricia Kenney: And I think it’s important to keep those goals out there, not only for our children who are indiscernable from their peers, but for the rest of the population as well. If your child has a way to make their bed, show them how to make their bed.

Temple Grandin: Well, that’s just it. There’s not enough expectations for behavior. When I was a young child, I was able to go out to nice restaurants and behave. Now, some of the noisy restaurants we have today, I would’ve had a problem with, but we’ve got to have some expectations for behavior. Obviously, if a child’s having problems with sound sensitivity, we can’t force him to be in a noisy sports bar where there’s sensory overload with 15 televisions going on all at once on diffeent channels. I would’ve had problems with some of that kind of stuff. But on the other hand, a quiet dinenr at Granny’s, there was expectations for table manners and behavior, and usually I complied. I’m not seeing enough expectations for the things they can do.

Tricia Kenney: Umhm. I think a lot of people just do a blanket assessment: “Well, if they can’t tie their shoes, I’m not going to sit there and try to get them to make their bed.”

Temple Grandin: Well, I had trouble learning to tie my shoes, and I had to keep trying to do it until I finally learned how to do it.

Tricia Kenney: Umhm. And I think just because your child may not be able to tie their shoe at this moment doesn’t mean that they aren’t able to pick up their toys or make their bed or learn to brush their hair.

Temple Grandin: I was epected to do those things. I did have trouble in the beginning tying my shoes, but then I eventually did learn how to tie my shoes.

Tricia Kenney: I did want to ask about the sensory issues. I know we talk a lot about how the sensory overloads happen in all the different environments.You hear a lot about how these sensory diets help fix that. Have you seen a lot of progress in that way? Does it work?

Temple Grandin: Some [it seems to work?] very well. It depends upon the child. It’s very variable. See, one of the problems you have in autism is one child will have sound sensitivity; another kid has problems with fluorescent light flicker at the local Wal-Mart. Another child’s very touch sensitive, and can’t stand to be hugged. But some of those kids will seek deep pressure, and you can actually desensitize them so they’re going to like being hugged, but you’re not going to get scratchy wool against their skin. There’s no way I’m wearing wool against my skin. That’s just absolute torture.

Tricia Kenney: Yeah.

Temple Grandin: But the sensory issues vary. They vary from being a nuisance to being very debilitating. They also vary in which sensory system’s involved. One child may be mainly sound sensitive; another one may have smell sensitivities, or you can have visual sensitivities. It’s very variable. So maybe doing some ways to do deep pressure, maybe under some bean bag chairs or sofa cushions, can work for one child. Another child, it’s not going to work. You have to look at what kind of sensory issues does the child have. It’s very variable across the autism spectrum. Those things should be diagnosed by which sensory system’s involved, not “autism” or “not autism.”

Also, other disorders can also have sensory issues. Some kids with learning problems have sensory issues; some kids with dyslexia have sensory issues; some ADHD kids have sensory issues. This brings up the whole diagnosis thing. Diagnosis is not precise, and they’re proposing right now to take out the PDD-NOS, take out the Asperger’s. But the thing is, these are not precise diagnoses. They’re behavioral profiles. It’s not precise like a lab test that tells you whether or not you have tuberculosis.

Tricia Kenney: Right, exactly. Anybody who has a child who’s been diagnosed knows that there’s no X-ray that’s done; there’s no blood drawn.

Temple Grandin: No, that’s right.

Tricia Kenney: It is simply a battery of tests, of observations.

Temple Grandin: There’s differences between clinicians. The new guidelines that they’re proposing for 2013, there’s two big things they’ll be looking at. One of them is they’re taking the speech delay stuff out, and they’re just saying: “By early childhood, a lot of problems with social interaction,” really emphasizing social. And then the other thing is the repetitive behavior, fixated interests, and then also they can have sensory issues. And the speech delay stuff, they’re proposing to take out. So you’ve got a lot more emphasis on the lack of social interaction and the repetitive behavior and fixations.

Tricia Kenney: So they won’t automatically say somebody who is nonverbal by the age of three [unknown]—

Temple Grandin: No. They’re just saying “early childhood” now. And they’re taking out the stuff about the speech delay. If you want to look at those proposals, you can go to Autistic Disorder (Autism Spectrum Disorder) Proposed Revision And then you can pull up the proposed guidelines and you can go on that website and you can pull up all the proposed guidelines for other disorders. The thing is, you’ve got a committee of doctors sitting in a conference room, deciding what these things are going to be. Some of it’s based on research; some of it’s based on opinion. I have problems with some of these diagnostic categories they’re coming up with, like Oppositional Defiant Disorder.

Then you have things in there that are definitely real disorders, like schizophrenia. Then you have autism, where maybe you take a kid that’s a geek or or a nerd, and he’s a little less social. When does that just become a personality variant? There’s no black and white dividing line between autism and non-autism.

Tricia Kenney: Right. Generally, none of those kids would’ve been diagnosed ten, 20 years ago.

Temple Grandin: Exactly. Exactly. And then [unknown] [I?] can think of all kinds of kids that’d be diagnosed Asperger’s today. I just got asked all the time about: “Is autism increasing?” I think severe autism has increased, but the Asperger’s, they’ve always been here. I can pick out kids I went to school with in the ’50s that would definitely be diagnosed Asperger today. And they were just diagnosed as being a little geeky in the ’50s.

Tricia Kenney: Right. And it wasn’t any big red flag.

Temple Grandin: No, no.

Tricia Kenney: If you muddled through your studies and you excelled in one or two, you’re fine. [Laughter] And get on with your life kind of thing. So it’s a little bit different now, and it gets very oppressive when we have all of these diagnoses put on us.

Temple Grandin: First of all, don’t get hung up on these labels, because they are behavioral profiles. They are not precise. When you look at how the brain is set up, you look at the whole DSM-V thing, you’ve got diagnostic categories where I’m going: “Wait a minute. I don’t think this should be a medical disorder.” And then right beside this, I’m like: “Autism, that’s a real thing, schizophrenia, bipolar,” and I actually like the old term, “manic-depression” better, because it better describes what actually happens—alternating mania and depression. Obsessive-compulsive disorder’s real.

They’re coming up now with “temper dysregulation disorder,” where there’s just a lot of meltdowns all the time. That has to happen after age six to be diagnosed with that. I’ve been reading some of the stuff in Science and Nature, which are two premiere scientific journals. Eventually, we’ll be 20 years into the future, we won’t be using these behavioral profiles anymore. We’ll just put them in a brain scanner and go: “Okay, well the amygdala’s not responding to faces. It’s face-recognition circuits are messed up.” And be able to just target therapies based on what showing up on real-time brain scanning. But that technologies not here yet.

Tricia Kenney: What would be really nice is if you could enroll your child in school, and have the teachers say: “Okay, we’re doing a little bit of testing. Obviously this child needs this and this and this and that, and is doing fine in that area or this other area, so we’ll give a little extra effort towards these target points.” They don’t have to go through the whole diagnosis process.

Temple Grandin: People get hung up on the diagnostic label. I say: “Okay, now what is the child’s problem?” First of all, I want to find out what his verbal ability is. How his speech level is. How old he is. Okay, what’s he having problems with? Is he sound sensitive? Then you do something about the sound sensitivity. One of the things you can try doing there is set up a situation where the child can initiate the sound.

Let’s say it’s a dreaded smoke alarm, and he’s afraid to go in a room that he sees a smoke alarm. Well, maybe get a smoke alarm—an old one—and wrap it up in about ten towels, and he can reach inside and he can turn it on. It’ll be really faint. Then you gradually take the towels off. A sound that the child initiates is tolerated better. And then eventually you peel the towels off, and the smoke alarm’s going to get louder and louder and louder.

Or maybe you could record it on a recording device. But the problem you have with MP3 files is they don’t get true fidelity. So on the dreaded smoke alarm, I want to make sure we have true fidelity. So get an old real smoke alarm and wrap it all up and make it quieter, and then let him turn it on. But it’s very important that the child initiates the dreaded sound. Then he can turn it off, too. He has control.

Tricia Kenney: Instead of harboring your child and protecting them from that sound and saying: “Well, my child can’t go to school that day because you’re doing fire alarm testing—”

Temple Grandin: Well, there’s some kids where they can learn to tolerate the fire alarm, and there’s some that cannot. There are some very, very, very sound sensitive and light sensitive [people] that are never going to tolerate the big supermarket. I’ve taught parents where the child takes three days to get over a trip to the supermarket. And then there’s others that can get in there and they can learn to tolerate it. I can’t stand the sound of those awful hand dryer blowers that they have in the restrooms.

Tricia Kenney: Mm, yeah.

Temple Grandin: I actually hate them, but I tolerate them. I tolerate them. I don’t like them, I want to get away from them, I don’t want to use them, but I can tolerate them.

Tricia Kenney: Right.

Temple Grandin: Where when I was a little kid, I…they didn’t have those in the ’50s, thank goodness. But let’s say they’d had them in the ’50s. That’s something where I could’ve learned to tolerate them. I still don’t like it; I still want to get away from it.

Tricia Kenney: Right. But there are so many things that are just going to be a part of life.

Temple Grandin: Well, that’s right.

Tricia Kenney: And so what do we do? Obviously, we can’t protect somebody from certain things for all of their existence.

Temple Grandin: No, you can’t. You can’t. I was in the airport one time and the fire alarm went off in this big, long concourse, and I moved down the concourse, and I just got blasted out by another fire alarm. No, I couldn’t start screaming in the middle of the airport. I had to just take it. I hated it, but, you know.

See, it depends upon the severity of the sensory problem. There are some individuals where the sound sensitivity’s so bad or the fluorescent light sensitivity is so bad they can’t tolerate it, and there’s others that can learn to tolerate it. One of the things you can do for the fluorescent light thing, if you’re in a classroom that has this problem, is put 100-watt lamp next to the child’s desk to blot out the fluorescent lights, or get the child’s desk over by the window to blot out the fluorescent lights.

The sensory problems is one area where I think there needs to be a lot of research. I know people that are totally debilitated. Another thing on sound sensitivity is, if you wear earplugs when you’re in a noisy cafeteria, that’s fine. But they have to be off half the day. If you don’t have those earplugs off for half the day, or that headphone off for half the day, then your ears’ll get more sensitive.

Tricia Kenney: Right.

Temple Grandin: So it’s okay to put it on to go shopping in the supermarket, but then when we get out in the car, I want it off. Or when we get back home, I want it off. You don’t want to make the ear more sensitive. Actually, it’s the brain that gets more sensitive, not the ear.

Tricia Kenney: I was watching a video about sensory processing disorder. In it, they did say that with enough sensory therapy, that it will correct the sensory processing disorder.

Temple Grandin: Yeah, that’s right. You can partially correct it. I know people that have gotten Irlen colored glasses, and it seemed like it did kind of correct it. I think some of them can be partially corrected. There’s others that probably will never be totally corrected.

Tricia Kenney: Okay. I was thinking: “Okay, so if we just do this massive sensory diet therapy thing, then all of those connections will be fixed, and they won’t have that sensory issue anymore.” But that’s not necessarily true.

Temple Grandin: No, not quite that. I don’t think it’s quite that simple. I think it depends upon the initial problems of the brain to start with. There are some children where you do a weighted vest; it works really well. But remember, 20 minutes on, then you’ve got to take it off a while, because if you leave it on after he habituates, it’s not going to work. You don’t want to do these things too long.

And there’s some kids where these things work. There’s some kids where it can correct, and I think there’s others where it doesn’t. This is something when they get the right kind of brain scanning programs, you’d be able to look in the brain and see maybe how the circuits are getting corrected. And there’s evidence that there is plasticity and circuits can get corrected. And then there’s others where it doesn’t correct. I think it depends upon the initial problems with the brain. And again, if there’s epilepsy involved, that makes everything worse.

Tricia Kenney: Mm. And I think parents need to really consider, not everything is autism, either.

Temple Grandin: That’s right.

Tricia Kenney: In one of my children, there was birth trauma, which I’m sure adds to everything. I have two autistic children, and they’re twins, and one is indiscernible from his peers, the other one is not. And the one who is not did experience some birth trauma, and so I have to take that into account when I’m dealing with him and what he’s doing. But he still progresses. He’s still capable of learning.

Temple Grandin: Well, that’s right.

Tricia Kenney: And I think we have to decide what we consider success. Not all of our children are going to grow up to be a doctor or a lawyer or a scientist.

Temple Grandin: That’s right. That’s absolutely right.

Tricia Kenney: I think success would really be better measured in happiness and fulfillment.

Temple Grandin: Well, and then also, just gradually learning new skills. I’ve found even in myself, I keep learning new things every day. People have told me my talks at age 60 are better than my talks at age 50. The thing is, you keep learning, bottom-up learning rather than top-down. The normal mind gets the theory and then tries to put all the information into it. But the thing about being on the autism spectrum is, you can always keep improving and always keep learning.

And you’ve always got to stretch the envelope a little bit. Obviously, there are certain individuals you can’t take into a busy Wal-Mart. They just can’t tolerate that. But then there’s others where you stretch it, and you take them in there for five minutes when it’s not busy and they gradually learn to tolerate it. It’s so variable.

Tricia Kenney: Exactly. And I think it’s wonderful that you’re talking about this, because you are an autistic woman, and you were considered moderate-to-severely affected when you were little.

Temple Grandin: When I was a little kid, I had no speech at two and a half to three—no speech at all. I would scream; I’d sit and rock. So I was severely affected. Now, the one good thing for me is, they tested for petit mal or small little epilepsies, and I did not have epilepsy. In other words, my EEG was normal. Now, of course, it’s a 1949 EEG.

But the doctor I went to, [Unknown] Carruthers, he tested me at two and a half with a neurologist, a real famous neurologist at Boston Children’s Hospital. She said that she was really pleased that I did not have petit mal epilepsy. I was specifically screened for that. Unfortunately, where you’ve got a lot of epileptic activity in the EEGs, that’s not a good sign, because the brain has more problems if they have epilepsy, and I’ve never had a seizure. But I’ve talked to parents where the child has autistic symptoms and they’re having non-stop seizures. Well, now you’ve got a problem that goes way beyond autism.

Tricia Kenney: Yeah. Yes. And again, you need to look at everything that’s going on with your child. You can’t just say: “Well, it’s autism,” because we’re human beings and there are an array of things that go on with our bodies. To try and just say: “Well, there’s autism for you,” that is not really—

Temple Grandin: I do want to apologize for doing interruptions. I still have problems with knowing when to break in to a conversation. I know I did interrupt you, and I want to apologize for that.

Tricia Kenney: No, no, that’s okay. [Laughter] When you’re on the phone, it’s a little different because you’re not face to face and you don’t have those sort of cues, where you can see where you can break in. When you’re on the phone, you’re [unknown].

Temple Grandin: I just want to end up saying, you need to look at what exact symptoms your child has. If it’s speech delay, you need to work on the speech. If it’s sensory problems, you need to work on the sensory. If it’s temper tantrums, you need to work on ways to control that. A lot of autistic kids have gastrointestinal problems. Those need to get cleared up.

Tricia Kenney: Right. And another thing, I think, is to look at where it’s coming from. If your kid is misbehaving, tantrumming and things like that, maybe it’s not just because they haven’t been trained very well, but maybe there is something else going on. Maybe it is a sensory issue. You have to look at the environment that it’s happening in, as well.

Temple Grandin: You also have got to look for hidden painful medical problems, like acid reflux, heartburn, constipation, urinary tract infections, toothaches. You have to rule out a hidden painful medical problem that they cannot tell you about, and I talk about that in a lot more detail in my book The Way I See It.

Tricia Kenney: Yeah, and that’s a very good point, as well. If your child has an issue with lactose intolerance or something, it’s going to make life very difficult for them if you’re giving them milk all day long and they’re in pain, and they can’t tell you.

Temple Grandin: Special diets definitely help some of the kids: things like gluten and wheat-free and dairy-free diets help some kids.

Tricia Kenney: Yeah, definitely. If there are those allergies or if they have intestinal issues, which a lot of the population do—even people who aren’t autistic.

Temple Grandin: That’s right.

Tricia Kenney: And it can run in anybody’s family. I can tell you, my mother had dairy issues; I have dairy issues. It took me almost four years to figure it out, that that’s probably what’s going on with my son, since he’s in so much pain. So I take out the milk, and voila! he’s sleeping through the night.

Temple Grandin: They did say 20 seconds. Are we still on the air?

Tricia Kenney: Oh, yeah, we’re still on. I extended it so that we wouldn’t get cut off.

Temple Grandin: Okay.

Tricia Kenney: But we’ll go ahead and wrap this up, though. I know you’re a very busy woman and you’ve got things to do. Again, I did want to say that I appreciate you coming on and talking about this, because I think it’s so important for autistic people to share what they’ve experienced, especially in early life, so that parents who are new and going through it right now and maybe just for the past couple years or whatever have somebody who’s been there.

Temple Grandin: Well, I’ve got a lot of sensory issues. I still have problems with touch sensitivity. I can remember the frustration of not being able to talk, and that resulted in temper tantrums. Special diets didn’t really do too much for me, but they really do help some kids, especially some of the kids where they seem to get some language and then they regress. The diets work for some and they don’t for others.

You see, this is the problem on doing studies on these things. Autism is so variable, and I think the diets are probably going to work the best with kids that have gastrointestinal issues.

Tricia Kenney: Yes. Studies have even shown that those can be mistaken for autism.

Temple Grandin: Well, you can get a lot of temper tantrums and things like that that are caused by painful medical problems. There are articles of scientific literature that show that there’s increased incidence of gastrointestinal issues in autism.

Tricia Kenney: Mm. Definitely get those things checked out. Take care of those things. I know it’s hard, especially if you’re on a really tight budget as it is to get specialized foods.

Temple Grandin: Well, actually, you don’t have to get specialized foods. Let’s just look at Mexican, for example. You can do a little easy wheat-free, dairy-free with Mexican. You can use corn tortillas, rice and beans and hamburger meat, and you just leave the cheese off. Now you’ve got a wheat-free, gluten-free diet with regular Mexican stuff that’s very, very cheap. The only reason you need to buy special foods is if you want to eat stuff that looks like wheat products. But you can go Mexican if you can tolerate corn, and usually corn’s better tolerated than the wheat. You can do Mexican just fine, and you leave the cheese off.

Tricia Kenney: Right.

Temple Grandin: And then there’s some kids you can put the dairy back in as cheese or yogurt, but you have to keep the wheat out. But Mexican’s actually really easy to do. It doesn’t have to be expensive. You could use rice for your starch, potato. Those are cheap. You don’t have to buy all those special things. You only buy those special things if you want to eat pizza and cookies.

Tricia Kenney: And sandwiches, yeah. [Laughter]

Temple Grandin: Rice and potatoes are cheap. Dirt cheap. And that’s on the diet: you use hamburger meat. All your fruits and veggies. You can just buy frozen peas and things like that. It can be done economically.

Tricia Kenney: Right. And I’ve found, a lot of kids—at least mine—don’t like their vegetables and fruits to be cooked or canned. They like them cold and crunchy.

Temple Grandin: Well, do cold and crunchy, then. [Unknown]

Tricia Kenney: Right, and that’s even easier and better for them to begin with, because it’s not processed. You just give them raw carrots, they’re happy. You don’t have to go through all that trouble. But again, it depends on your child. You might have texture issues and whatever with their eating habits, so again, it varies, child to child.

Temple Grandin: That’s right. It does.

Tricia Kenney: But again, I think it’s wonderful when we have autistic adults sharing their own experiences, what they’ve gone through, and try to help out those who are going through it now. Really, all we have to go on is what the doctor tells us, and it might not be a great doctor. [Laughter]

Temple Grandin: Well, that’s the problem. And the thing is, there are a lot of people out there selling a lot of stuff. I don’t want to sound like I’m selling my books, but I do think they’re good sources of information and they’re Thinking in Pictures, and then the other one is called The Way I See It

Tricia Kenney: Right. Well, I do want to hank you again for being here, and good luck with everything this coming year. I know it’ll be hard to top 2010. That was quite a monumental year for you.

Temple Grandin: Claire Danes just did a phenomenal job in the HBO movie. She was just phenomenal. She became me in the ’60s and the ’70s.

Tricia Kenney: Yeah, it was just amazing, and I think everybody who’s seen that movie just loves it. I know people who have absolutely no connection in the autism community who saw it and were just like: “Wow! That was an amazing movie!”

Temple Grandin: It’s up now for three Golden Globes, for best TV miniseries picture; best actress for Claire Danes, and best supporting actor, David Stratham.

Tricia Kenney: Let’s cross our fingers. I hope they win.

Temple Grandin: Yeah.

Tricia Kenney: It was just so wonderful that we had a mainstream movie come out like that. It let people know that we’re here. [Laughter]

Temple Grandin: That’s right. And the autism is depicted very accurately in the movie. The autism is depicted accurately; my sensory problems are accurate. All my projects were recreated accurately, and it shows visual thinking, how I think. The word “shoe” is said and a bunch of shoes flash up in succession. It’s very clinically accurate. Now, there were some events that were changed around, but in terms of clinical accuracy, we were very, very fussy about that. Emily Gerson Saines, the producer, is the mother of an autistic child and she wanted to make sure it was right.

Tricia Kenney: Right. And I think that’s something that a lot of people don’t get when they hear the word “autism” or they get that diagnosis for their child or something. They don’t get that clinical part or that part where you’re showing how the brain is processing, how the autistic brain works, and that rapid succession of firings that go on with every little association.

Temple Grandin: Well, the other thing, people on the spectrum and with a lot of different disorders have problems with multitasking. I’m definitely one of those.

Tricia Kenney: [Laughter] Yep. Yeah, and it’s not the end of the world.

Temple Grandin: No, it’s not.

Tricia Kenney: I think you’ve done fairly well, regardless. Definitely an inspiration. I think you’re quite the example when we talk about potential in your children. Not everybody’s going to do everything that you’ve done.

Temple Grandin: No, of course not.

Tricia Kenney: You’re an extraordinary example, but it should motivate people.

Temple Grandin: Yeah, that’s right.

Tricia Kenney: I hope that it motivates people to say: “Hey, I don’t have to hang up my shoes right now. I think we can still keep going. There’s still a chance,” because there is. Every person is capable of learning.

Temple Grandin: That’s right.

Tricia Kenney: Again, thank you so much for being here today.

Temple Grandin: All right.

Tricia Kenney: And good luck to you in the new year.

Temple Grandin: Well, thank you so much for having me.

Tricia Kenney: All right. You take care now.

Temple Grandin: Okay, I will. Yeah, bye.

Tricia Kenney: Bye-bye.

[Temple hangs up]

Okay, well that was really great. I hope that this has given everyone out there a little bit of hope and inspiration. It hopefully answered some questions as to what you can work on with your children. You don’t need to extinguish their interests or the thing that you feel they are obsessed with. You can actually utilize those things into a very successful life for your child. So I’m just so thrilled that Temple was with us today. So thank you everyone who listened in, and be sure to listen in for our New Year show on the 31, and we’ll be going over the past year. That will be on December 31. All right. Thank you. Bye-bye.

[End]