Thinking in Pictures: My Life with Autism

by Temple Grandin

  Since Thinking in Pictures was written, the mild Asperger diagnosis is being used more and more. At the many autism conferences that I attend, I am observing more and more very smart children with a diagnosis of Asperger's. Some of these children should be in a gifted and talented class instead of being sent to special education. There are other Asperger's individuals who may need special education in their area of weakness and be in an advanced class in their area of strength. I am worried that students who would be capable of a challenging career in science, engineering, or computers may be shunted into a special education rut. In fairness to special education teachers, it is difficult to work with a spectrum that can range from nonverbal to genius.

  Diane Kennedy, author of ADHD Autism Connection, was one of the first people to write about the confusion of Asperger's with attention deficit problems. I talk to more and more parents of children with a diagnosis that switches back and forth between Asperger's and ADHD. Many parents have told me that stimulant ADHD medications such as Ritalin (metehylphenidate) and Adderall (a combination of four different types of amphetamines) have greatly helped their children. It is likely that some individuals on the high-functioning end of the autism spectrum share traits with ADHD. Children or adults who have more classical types of autism or are nonverbal often become agitated and worse on stimulants. A trial of only one or two pills is all that is needed to determine if stimulants will be helpful or terrible.

  Brain Research and Early Diagnosis

  During the last ten years, there has been an increased understanding of autistic brain abnormalities. A normal child's brain grows at a steady rate. Detailed brain scans of autistic children in Dr. Eric Courchesne's lab indicated that in the first year of life there is premature overgrowth of the brain followed by an arrest of growth. Children with greater amounts of abnormal overgrowth usually have more severe autism. Research has also shown that the serotonin systems in the autistic child's brain are highly abnormal. This may explain why doses for SSRI antidepressants often need o be kept very low to prevent agitation. The degree and pattern of abnormal overgrowth will be highly variable from child to child. David Amarel at the University of California found that the variability of overgrowth was greatest in low-functioning autism. He also discovered that the immune system is often abnormal and may affect the brain.

  The excess of brain overgrowth causes the infant's head to become abnormally large between the ages of one and two. Later in childhood, the head size returns to normal due to later undergrowth of the brain. Measuring a young infant's head circumference (hat size) with a tape measure could be used as a simple screening tool for detecting babies who might be at risk for autism.

  Other early screening tools that are being developed test for joint attention. Joint attention occurs when normal babies orient and follow an adult's gaze. When the adult is playing a little game, asking the baby to look at the pretty birdie, the baby will look where the adult is looking. The infant at risk for developmental problems will not follow an adult's gaze. Patricia Kohl at the University of Washington is working on another screening tool. This tool will detect children at risk for developmental problems who do not orient toward normal speech sounds. This is due to being unable to hear consonant sounds. Normal babies prefer to listen to “motherese”—expressive slowed down speech where the mother enunciates the words. Autistic babies prefer computerized warbling nonspeech sounds. The test would be conducted by observing the infant to determine which sounds he orients toward.

  Early Education

  Both scientific studies and practical experience have fully confirmed that young children with autism need at least twenty hours a week of intensive one to one teaching by an adult. All experts agree that the worst thing to do with an autistic two- to five-year-old is to let him watch TV all day. There is much debate about the best early education programs. I have observed that the best teachers tend to use the same methods regardless of the theoretical basis of the program. A review of teaching methods by Sally Rogers at the University of California at Davis indicated that discrete trial or ABA (Applied Behavioral Analysis) teaching methods were the most effective to get language started. This structured highly repetitive method helps jump-start language in young two- to five-year-olds. The discrete trial programs used today are usually more natural and less rigid than the older Lovaas method. To teach socialization and play skills methods such as Greenspan's floor-time and Dr. Lynn Kern Koegel's program are more effective. Dr. Koegel's book Overcoming Autism is full of practical teaching methods. In the floor-time method, the teacher engages the child in many interactive games and encourages social play.

  Autism and PDD are highly variable and the methods that work for each child should be used. Dr. Koegel found that some little children respond well to a highly structured Lovaas-style program and other types of autistic children, who are more socially engaged, may make more progress with a less structured program. Do not get too single-minded on one method. Use things that work and eliminate things that do not work. Sometimes a combination of methods is best. For older high-functioning children, highly repetitious programs are boring and they need lessons that will stimulate their minds. In elementary school children a child's fixation can be used to motivate learning. If a child loves trains, then read a book about a train or do a math problem involving trains.

  If shooting-type video games had been available when I was little, I would have become a total addict and I may not have developed more career-related interests such as building things or flying kites and airplanes. The video games with lots of rapid movement are the most addictive. For me, rapid movement video games would have just been another way to “stim” and “zone out.” I would rather encourage the older child to become really interested in doing science on a computer or learning programming. Free software is available that will turn a kid's computer into part of a super computer that crunches numbers on a real scientific project. The May 6, 2005, issue of Science is devoted to these fascinating projects. Looking at the NASA Web site and following a space probe during its journey is a wonderful way to use computers. The problem with video games is that both parents and teachers tell me that some students get so addicted that they have no other interests. I get hypnotized by screen savers with changing patterns that move rapidly. I cannot stop looking at them and for me to get any work done I have to shut them off. Video games or screen savers that move slowly do not have this effect.

  Totally banning shooting-type games is probably a bad idea, but the time playing them should be severely limited. This is especially important for a child like me. They provide an activity that the autistic child can discuss with other kids at school and this may help the child socially. However, I want to direct the autistic child's interests into more constructive activities.

  Genetics and Autism

  Research during the last ten years confirms that autism, PDD, and Asperger's all have a strong genetic basis. Craig Newschaffer, Johns Hopkins School of Medicine, estimates that 60 to 90 percent of autism cases are genetic. Dr. Isabel Rapin and her colleagues at Albert Einstein College of Medicine reviewed papers published between 1961 and 2003. They concluded that interactions between multiple genes explain the highly variable nature of autism. Genome scans of families with many cases of autism indicate that at least ten genes are involved. They also found that the probability of having a second autistic child is 2 to 8 percent. Researchers have also confirmed previous studies that show that relatives of people with autism will often have many milder autistic-like symptoms. I have observed that the probability of having a child with low-functioning autism increases when both parents and their families have many autistic traits.

  Many computer programmers exhibit autistic traits. Steve Silberman asked in an article entitled “The Geek Syndrome” in Wired magazine—are math and tech genes to blame? The computer and technical industries depend on people with attention to detail. The real social people are not interested in computers. Herbert Schreir of the C
hildren's Hospital in Oakland, California, believes that intermarriage of “techies” explains why people have noticed high pockets of autism around Stanford and MIT Universities.

  In 2004 and 2005, my webmaster for www.grandin.com (my livestock website) started giving me a list every month of the cities with the most hits on my webpage. Month after month, Redmond, Washington, where Microsoft is located and San Mateo, California, near Stanford University are in my top five cities. There is a total of one hundred cities on the list. The number one page downloaded is the first chapter of Thinking in Pictures. Even though my site is a livestock site, the autism book chapter gets the heaviest traffic. Is this because people in these areas are especially interested in the ways brains work, or does autism affect them more directly?

  There are differences of opinion in the autism field about the relationship between autism and Asperger's. Are they really separate syndromes? Family and genetic studies done in the United Kingdom indicate that autism and Asperger's are part of the same spectrum. Research by Fred Volkmar at Yale showed that Asperger individuals with no speech delay are often poor at a visual thinking task such as the block design test on the WISC and high-functioning autistic individuals are more likely to be good at this test. In the block design test, the task is to assemble colored blocks to match patterns shown in a book. This difference could be explained by the differences in where the “computer cables” hook up. The underlying brain abnormality of underconnectivity problems would still be similar.

  There is concern among people with Asperger's that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out. A little bit of autism genetics may provide an advantage though too much creates a low-functioning, nonverbal individual. The development of genetic tests for autism will be extremely controversial.

  Autism Epidemic

  Many researchers agree that the increase in Asperger's syndrome is mostly increased detection. People who used to be labeled as science geeks or computer nerds are now diagnosed with Asperger's. Research in Sweden by Christopher Gillberg showed that some severe cases that used to be labeled mentally retarded are now labeled autistic. Another cause of the increase may be changes made to the DSMIV (Diagnostic and Statistical Manual) published by the American Psychiatric Association in 1994 to expand the diagnostic criteria to include Asperger's and Pervasive Developmental Disorders (PDD). The Centers for Disease Control (CDC) estimate that there are three to four autism cases per one thousand children. A CDC study in Atlanta, Georgia, indicated that 40 percent of all children on the spectrum are only diagnosed at school and 41 percent of special education students are on the autism spectrum. A fully verbal child with mild Asperger's will often not have any problems until he/she enrolls in school. Unfortunately there are severe cases of autism who do not receive services until they go to school. From my own observations there is one type of autism that I think has increased. The regressive type where the child loses language at age eighteen to twenty-four months. David Geier and Mark Geir, two autism consultants, state that exposure to mercury causes regression-type autism. Mercury has now been removed from many vaccines, but fish and power plant emissions are other sources of mercury. Other scientists question the effect of mercury in the incidence of autism.

  There is increasing concern about environmental effects on the fetus during pregnancy. If these factors affect the incidence of autism, they probably could interact with susceptible genetics. An outside insult like toxic exposure could turn a brilliant Asperger baby into a nonverbal one. This is purely speculation. New research supports the idea that genetics susceptibility interacts with environmental insults. Scientists have developed a genetic line of mice that are highly susceptible to mercury toxicity. When the mice are given injections that mimic a vaccination schedule the normal mice have no ill effects and the susceptible mice develop autistic-like symptoms such as tail chewing and repetitive behaviors. Possibly there are some children who would have a similar susceptibility to mercury. Mady Horning at the Columbia University School of Public Health has a three-strikes model. The factors that all interact with each other to cause a developmental disability are:

  1. Genetic susceptibility

  2. Exposure to a toxic agent

  3. The timing during development that exposure to a toxic agent occurs. A toxic agent may have no effect at one stage of development and bad effects at another stage.

  Twin studies show further evidence of an interaction between environment and genetics. Mady Horning states that the concordance rate for autism in genetically identical twins is 90 percent. This means that 90 percent of the time both twins are autistic. In genetically different nonidentical twins the concordance rate is 35 percent and the autism rate in siblings is 4 percent. Further information on the mercury controversy can be found at the Autism Research Institute in San Diego, California, or in a new book by David Kirby entitled Evidence of Harm.

  3

  THE SQUEEZE MACHINE

  Sensory Problems in Autism

  FROM AS FAR BACK as I can remember, I always hated to be hugged. I wanted to experience the good feeling of being hugged, but it was just too overwhelming. It was like a great, all-engulfing tidal wave of stimulation, and I reacted like a wild animal. Being touched triggered flight; it flipped my circuit breaker. I was overloaded and would have to escape, often by jerking away suddenly.

  Many autistic children crave pressure stimulation even though they cannot tolerate being touched. It is much easier for a person with autism to tolerate touch if he or she initiates it. When touched unexpectedly, we usually withdraw, because our nervous system does not have time to process the sensation. One autistic woman told me that she enjoys touch, but she needs to initiate it in order to have time to feel it. Parents used to report that their autistic children loved to crawl under mattresses and wrap up in blankets or wedge themselves in tight places, long before anyone made sense of this strange behavior.

  I was one of these pressure seekers. When I was six, I would wrap myself up in blankets and get under sofa cushions, because the pressure was relaxing. I used to daydream for hours in elementary school about constructing a device that would apply pressure to my body. I visualized a box with an inflatable liner that I could lie in. It would be like being totally encased in inflatable splints.

  After visiting my aunt's ranch in Arizona, I got the idea of building such a device, patterned after the cattle squeeze chute I first saw there. When I watched cattle being put in the squeeze chute for their vaccinations, I noticed that some of them relaxed when they were pressed between the side panels. I guess I had made my first connection between those cows and myself, because a few days later, after I had a big panic attack, I just got inside the squeeze chute at the ranch. Since puberty I had experienced constant fear and anxiety coupled with severe panic attacks, which occurred at intervals of anywhere from a few weeks to several months. My life was based on avoiding situations that might trigger an attack.

  I asked Aunt Ann to press the squeeze sides against me and to close the head restraint bars around my neck. I hoped it would calm my anxiety. At first there were a few moments of sheer panic as I stiffened up and tried to pull away from the pressure, but I couldn't get away because my head was locked in. Five seconds later I felt a wave of relaxation, and about thirty minutes later I asked Aunt Ann to release me. For about an hour afterward I felt very calm and serene. My constant anxiety had diminished. This was the first time I ever felt really comfortable in my own skin. Ann went along with my odd request to get in the cattle chute. She recognized that my mind worked in visual symbols, and she figured that the squeeze chute was an important part of my journey in the visual symbol world. I don't think she realized at the time that it was the pressure from the chute that relaxed me.

  I copied the design and built the first human squeeze machine out of plywood panels when I returned to school. Entering the machine on hands and knees, I applied pressure to both si
des of my body. The headmaster of my school and the school psychologist thought my machine was very weird and wanted to take it away. Professionals in those days had no understanding of autistic sensory problems; they still believed that autism was caused by psychological factors. Since they wanted to get rid of my machine, they alerted my mother, who became very concerned. Like the professionals, she had no idea that my attraction to pressure was biological.

  Over the years I improved on the design of my machine. The most advanced version has two soft foam-padded panels that apply pressure along each side of my body and a padded opening that closes around my neck. I control the amount of pressure by pushing an air valve lever that pulls the two panels tight against my body. I can precisely control how much pressure my body receives. Slowly increasing and decreasing it is the most relaxing. Using the squeeze machine on a daily basis calms my anxiety and helps me to unwind.

  When I was young I wanted very intense pressure, almost to the point of pain. This machine provided great relief. The earliest version of the squeeze machine, with its hard wood sides, applied greater amounts of pressure than later versions with soft padded sides. As I learned to tolerate the pressure, I modified the machine to make it softer and gentler. Now that medication has reduced the hyperarousal of my nervous system, I prefer much less pressure.

  Since many people were trying to convince me to give up the machine, I had many ambivalent feelings about using it. I was torn between two opposing forces: I wanted to please my mother and the school authorities by giving the machine up, but my biology craved its calming effect. To make matters worse, I had no idea at that time that my sensory experiences were different from those of other people. Since then I've learned that other people with autism also crave pressure and have devised methods to apply it to their bodies. Tom McKean wrote in his book Soon Will Come the Light that he feels a low-intensity pain throughout his body which is relieved by pressure. He finds that very tight pressure works best. The amount of pressure a person desires may be related to his or her nervous arousal level.