Dr. Temple Grandin is in a unique position to provide parents and professionals insight into autism because she has autism. She was diagnosed at age 2 and has lived a very challenging and adventurous life. Dr. Grandin has presented lectures on autism around the world and has appeared on many national television programs. Her first book, Emergence Labeled Autistic, is considered one of the classic books in the field and is must reading for everyone involved with autistic children. Her new book, Thinking in Pictures, is already starting to receive much attention, and it will likely become another classic. Stephen Edelson first met Temple Grandin in the early 1980's when they were both graduate students at the University of Illinois at Champaign-Urbana. We are honored to present an interview with Temple Grandin (TG) conducted on February 1, 1996 by Dr. Stephen Edelson (SE).
SE: What is your earliest recollection, and how old were you?
TG: I was in a summer program when I was just a real little child about three. I can remember playing around in a wading pool. When I was 3 1/2 years old, I can also remember quite a few things. I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream. I can remember this very clearly.
I can remember a time when I was in speech therapy in nursery school. The teacher was using a blackboard pointer to point to the students to do something, and I was just screaming every time she aimed the pointer at me. I screamed because I was taught at home that you should never point an object at a person because it could poke out your eye. I could not tell the teacher that I was taught at home not to point things at people.
I can also remember someone playing the piano and marching around the piano. And I remember, which I think is my earliest memory, when I was taken into a hospital for a hearing test. I do not remember anything about the hearing test, but I remember I stayed overnight in the hospital. They let me sleep in a small bed with all kinds of stuffed animals and dolls.
SE: When a parent tells you that he or she has a child who was recently diagnosed with autism, what do you usually tell them?
TG: Well, first of all I want to know how young a child it is.
SE: First, let's say the child is under 5 years of age.
TG: I am a big believer in early intervention. You have got to keep autistic children engaged with the world. You cannot let them tune out. I can remember when I tuned out, I would just sit and rock and let sand go through my hands. I was able to shut the world out. If you let the child do that they are not going to develop. Many early intervention programs have different theoretical bases, but I have observed that good teachers do the same things regardless of the theoretical basis. And I think it is really important to keep them engaged. When I was a little child I was expected to sit at the table and have proper manners. Research is starting to show that a child should be engaged at least 20 hours a week. I do not think it matters which program you choose as long as it keeps the child actively engaged with the therapist, teacher, or parent for at least 20 hours a week.
I am also a believer in an integrated treatment approach to autism. One of my sensory problems was hearing sensitivity, where certain loud noises, such as a school bell, hurt my ears. It sounded like a dentist drill going through my ears. I was also very touch sensitive; scratchy petticoats felt like sandpaper ripping off my skin. There is no way a child is going to function in a classroom if his or her underwear feels like it is full of sandpaper. There are other serious sensory problems such as vision problems similar to what Donna Williams has described. I want to emphasize that sensory problems are different from person to person. There are going to be some children who have a lot of sound problems. Other children will have a lot of visual problems. Still other children will have a mixture of both, and other children, such as the classical Rain Man type, will have only a mild hearing sensitivity. I just cannot emphasize enough the variability of the problem.
Some children may need a behavioral approach, whereas other children may need a sensory approach. Autism is an extremely variable disorder. I really want to emphasize this point. A treatment method or an educational method that will work for one child may not work for another child. The one common denominator for all of the young children is that early intervention does work, and it seems to improve the prognosis.
SE: What advice would you give to parents who have a recently diagnosed autistic child between the ages of five and ten?
TG: Children between the ages of five to ten years are even more variable. They are going to vary from very high functioning, capable of doing normal school work, to nonverbal who have all kinds of neurological problems. For some children, I question whether autism should be the proper primary diagnosis. I have seen children who could hardly walk attend an autism meeting, and they also have a diagnosis of autism. Many, not all, of these cases appear to me as being very different from autism. You have got to look at each case, and do what is appropriate.
SE: You were one of the first people in the field to stress the importance of sensory problems in autism. What are your current thoughts about this issue?
TG: I have been a big believer in making people aware of the sensory problems in autism, and these sensory problems are variable. They are going to vary from a mild hearing sensitivity to a person who cannot see and hear at the same time. Their senses jumble together, and they are not able to locate their body boundary. This type of person needs a different approach than a highly verbal child who can do normal school work. In fact, some of these nonverbal children need a very gentle approach. Donna Williams wrote about a mono-channel approach, where she either has to listen to something or see something; but she cannot do both. I was the type of child where they could just jerk me out of autism by saying 'Now come on, pay attention!' But you cannot do this with children with more severe sensory problems. In these cases, you have to question whether there is a biological reason for the bad behavior or a behavioral reason. If sound hurts a child's ears, there is no way you can make him not be scared of the school bell.
SE: Several people sent questions for me to ask you. A mother who has a 5 1/2 year old child with PDD wants advise. Her son attends a pre-kindergarten classroom with 22 other students, and he is starting to become aggressive. The mother says that her child has selected a particular child in the classroom and places him in a choke-hold position.
TG: I do not have enough information to give full advice. Since PDD and autism are strictly behavioral diagnoses, they are not absolute diagnoses such as Down Syndrome. There is a tremendous range of children with a PDD label. From talking to parents, there seems to be two types of children who end up receiving a PDD diagnosis. One is a very mild case where the child is verbal, and he has only a few mild autistic traits. The other type of PDD child is neurologically disordered. He is nonverbal and has autistic sensory problems. The PDD label is used because he is affectionate and interested in people. These are two very different types of PDD labels, and they are like apples and oranges.
Since the child is aggressive towards one particular child, we need to figure out why is this is happening. Is the other child teasing him? In any case, a behavior intervention is needed to stop this behavior.
SE: Could it be the tone of the other child's voice?
TG: This is also possible. Some autistic children cannot stand the sound of certain voices. I have come across cases where teachers tell me that certain children have problems with their voice or another person's voice. This problem tends to be related to high-pitched ladies' voices. This is not true for every case.
I think you have to be a very good detective to determine what is causing the aggression. Maybe the child is just being bad. Unfortunately, there are many behaviorists who ignore sensory problems. For example, let's say that a child is afraid to go into the gym. I have heard several cases of this. The child is afraid because the scoreboard buzzer blasts his ears out. So he watches the clock, cringing when he knows the scoreboard is going to go off. No one wants to enter a room where a sound will feel like a dentist's drill being shoved down their ears. Fluorescent lights may be bothering him, or sometimes certain ventilators and fans in a room can make sounds that just drive him nuts. I had to have an operation one time in a hospital, and there was a ventilation fan in my room. I absolutely could not stand it. The fan had a broken bearing on it, and it squealed. I would use the bathroom in the dark. I just could not stand the noise.
There are some cases where children do things, and it is simply bad behavior. This problem needs to be dealt with behaviorally. But this is when you have got to be a good observer and figure out what is causing the behavior so you can use the right intervention. Unfortunately, I cannot give this mother specific advise because there is not enough information.
SE: Here is another question. A teacher writes that she has been working with a 9-year old girl with PDD for 2 years. The girl is super sensitive to touch, especially when she is being redirected to challenging activities, such as cutting, counting and gym. She reacts by saying "do not touch me, that hurts." However, she can be redirected in the same manner during reading; and there is no negative response.
TG: In other words, her touch sensitivity is changing depending on what she is doing. One problem is that there are many echoes in a gym. When I was a little child I had problems with eating in the cafeteria. The chairs would be jerking in and out, and there was a noise overload. Since most gyms are pretty noisy places, the noise maybe getting her nervous system excited, and her senses become more sensitive. In contrast, the place where she is reading and counting is a quiet place which helps her nervous system calm down. It would probably be a good idea to do some tactile exercises to decrease the sensitivity. One good exercise is deep pressure, such as rolling up in mats and lying under a mattress. Physical activities also help and a brushing method is quite effective in calming down the nervous system.
SE: What seemed to help you the most while growing up?
TG: There were a variety of things. People are always looking for the single magic bullet that will totally change everything. There is no single magic bullet. I was very lucky to receive very good early intervention with very good teachers, starting at age 2 1/2 years. I cannot emphasize enough the importance of a good teacher. A good teacher is worth his or her weight in gold. Some teachers just have a knack for working with autistic children. Other teachers do not have it. If you find a good teacher, hang on to him or her tight. My mother worked on teaching me how to read. I was on the right track by third grade, and I did quite well for about 3 years.
Junior high was a real mess for me and then came puberty. My anxiety attacks came during puberty, and then all of my nerves started. This period of time was awful. I had a good science teacher who got me interested in science. Later on I had employers who were very helpful. There were many people who helped me.
I started taking anti-depression medication in my early thirties. I would not be here now if I did not have anti-depressants. I know a number of autistic adults that are doing extremely well on Prozac. I want to give just one warning about anti-depressants. I want to explain how anti-depressants work. This applies to both the new medications, such as Prozac and its clones, and the older tricyclic anti-depressants. Anti-depressant drugs work on two circuits in the brain. The first circuit calms down anxiety and nerves, and the second circuit is excitatory. I will refer to this second circuit as the anti-depression circuit. After all they are called 'anti-depressants' because they eliminate depression. For people who are depressed, a large dose of an anti-depressant will take the person 'out of depression.' Since most autistic people are not really depressed, too large of a dose of an anti-depressant can cause irritability, agitation, and excitement. If a person overdoses on the drug, he or she may also become aggressive and suffer insomnia. Occasionally I hear about someone going nuts on Prozac. This was likely caused by an overdose. The trick is to calm down the nerves without sending the other circuit into a hyper-manic irritability. A common mistake is to give more drugs when insomnia and irritability start. This is the worst thing you can do. You have got to lower the dose. I have been on the same dose of anti-depressants for 15 years, and my nerves still go up and down in cycles; but my nerves are cycling at a lower level than they were before. You need to resist the urge to take more medication every time there is a little relapse. You cannot get 100% control. You can get about 90% control if things are really working properly. I would like to add one more thing about anti-depressant drugs--they are not for everybody.
Since there are many types of people who are given the label 'autism,' it is important to mention that what works extremely well for some people may not work at all for other people. And while we are on the subject of medication you always need to look at risk versus benefit. When a person takes a medication, you better look for a WOW reaction-"this stuff really works." This makes it worth the possible risk of taking a drug. If you start using a medication in a person with autism, you should see an obvious improvement in behavior in a short period of time. If you do not see an obvious improvement, they probably should not be taking the stuff. It is that simple.
SE: Unfortunately, some people are given a prescription and simply take the medication, whether or not it helps.
TG: When you take a drug to treat high blood pressure or diabetes, you have an objective test to measure blood pressure and the amount of sugar in the blood. It is straight-forward. With autism, you are looking for changes in behavior. The only way you can tell whether a drug really works, regardless of what it is, is when teachers and parents notice changes. When the child is brought to a doctor's office for 5 minutes, the child will either bounce off the walls, or he will probably act like a perfect angel. The doctor cannot see an accurate picture of behavior in 5 or 10 minutes. You only get an accurate understanding of the child's behavior from people who see this child or see the adult for many hours. Medications should provide obvious dramatic improvements. If there is no obvious improvement, then the drugs should be thrown away. If the person has been taking the drug for many months or years and you wish to discontinue it, the drug must be withdrawn very gradually. Drugs that have been taken for only a few days or weeks can usually be withdrawn abruptly.
SE: What type of feedback are you receiving from parents and professionals about your hug box?
TG: Many parents have told me that their sons or daughters seek pressure, especially some of the nonverbal adults. They get under the sofa cushions, wrap themselves up in blankets even when it is really hot, and lay between the mattress and the box spring. Pressure is calming to the nervous system. In little children, there are many inexpensive ways to provide deep pressure, such as gym mats and bean bag chairs. To help hyperactive children sit still in class, a weighted vest is often helpful. This is similar to a photographer's vest, and it is pad and weighted. In fact, just a little bit of pressure helps calm them down. I think the squeeze machine or hug box would be most valuable with adults, but I was also pleased to hear the results from your research study on the squeeze box. The results from your experiment makes sense to me; only a certain kind of child had big benefits. This is the kind of child with a hyperaroused sympathetic nervous.
The squeeze machine is not going to cure anybody, but it may help them relax; and a relaxed person will usually have better behavior.
SE: Some people do not realize that you have a doctorate in animal science. Briefly, what was the focus of your dissertation and what were your results?
TG: I did my dissertation on the environmental effects on dendritic growth in the somato-sensory cortex of the pig. There has been much research on rats in which one group of rats lived in a plastic laboratory shoebox, and the other group of rats lived in a Disneyland playground with all kinds of toys to climb, and the toys are changed everyday. The results clearly showed that the rats in the Disneyland environment had more nerve endings in their visual cortex. So I thought, let's try this experiment on the pig. I had some pigs live in a Disney-Pig-Land, with toys and straw bedding, and other pigs lived in a little commercial plastic pen. And guess what happened? We were very surprised--the results came out backward. The pigs in the little plastic pen had more nerve endings in their cortex. We then asked why this happened? We looked at the videotapes which were filmed during the night, when nobody's around; and we found that these pigs were doing a lot of rooting. They were rooting the floor and rooting each other. They were just doing stereotypic behaviors when nobody was around them. These extra nerve endings were probably very abnormal. This is one of the reasons that I feel very strongly that you should not let little autistic children sit in a corner and tune-out 6 hours a day. They may be forming 'Dendrite Highways' in places where they are not suppose to have them.
I would also like to mention, even though this is only theory at this point, that there is a possibility of secondary brain damage in autistic children. The child is born with immature brain development in the limbic system and cerebellum. But if these children withdraw, due to sensory or other problems, maybe other parts of their brain are not going to develop properly. This is only theory; I cannot prove this, but there are some experiments on animals that supports this idea. For example, if baby animals do not get proper stimulation when they are young, they are permanently messed up. As you may know, some of the stereotyped behaviors exhibited by autistic children are also found in zoo animals who are raised in a barren environment. Why would a zoo animal exhibit the same behaviors as an autistic child? Well, the autistic child withdraws because the world is a hurtful place--sound hurts, touch hurts, vision hurts, everything hurts--so they withdraw. Zoo animals are exhibiting these behaviors because of their deprived environment, where there is nothing to do. The lion in the zoo lives in a concrete box. Fortunately, zoos are making an effort to have nicer exhibits these days; but in the past, the lion in the zoo had nothing to do. As a result, their brains were not receiving enough input needed to develop, and stereotyped behavior developed due to boredom. Research has shown that a barren environment is much more damaging to baby animals than it is to adult animals. It does not hurt the adult animals the same way it damages babies.
This is one of the reasons why I am a believer in early intervention. We have got to work on keeping these children engaged with the world. There are some 3 year olds where you can go in and just jerk them out of it, and say "Come on, pay attention!" There are other children where this type of strategy does not work. With these children, if you start forcing eye contact, you are going to send the nervous system into sensory overload. They will then shut down, and nothing is going to get through to them. They are "mono channel," and they can use only one sense at a time. You need to sneak in the back door with this type of child. Try whispering to them very softly in a room free of visual distractions. You may also try to sing to them using a low, soft voice. Then maybe you can get through to them. There is great variability with autistic children.
SE: Do you feel you are missing something in life because of your autism?
TG: Just in the last couple of years, when I was working on my book, Thinking in Pictures, I realized that I am missing something that everybody else has-emotional complexity-and I have replaced it with intellectual complexity. I obtain great satisfaction out of using my intellect. I like to figure things out and solve problems. This really turns me on. When I observe emotional complexity in others, it is sort of a rhythm that goes on between a boyfriend and a girlfriend. I often observe this on airplanes. Sometimes I get to sit next to them. It is similar to observing beings from another planet. The relationship is what motivates them; but for me, it is figuring out how to design something, such as figuring out better ways to treat autism. I use my mind to solve problems and invent things. I get a tremendous satisfaction from inventing things and doing innovative research. We have just finished up several good experiments at the University. We came out with really good results, and it turns me on. My life is basically my work. If I did not have my work, I would not have any life. This brings up the importance of getting autistic people in high school and junior high school interested in something they can turn into a career. They need to build on their talents, such as art work and computer programming.