Thinking in Pictures: My Life with Autism (9 page)

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 Children'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. 1. Genetic susceptibility
   

2. 2. Exposure to a toxic agent
   

3. 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
T
HE
S
QUEEZE
M
ACHINE

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 sides 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.

Tom's overall sensory processing problems are more severe than mine. It is possible that for people with such problems, pressure to the point of pain functions as an attempt to reduce sensory discomfort. Tom wears very tight wristwatch straps on both wrists. He makes the bands as tight as he can without cutting off blood circulation. He also made a pressure suit consisting of a wet suit with an inflatable life jacket under it. He can adjust the pressure by blowing air into the valve on the jacket. Other adults with autism have also sought relief through the application of pressure. One man wore very tight belts and shoes, and a woman reported that pressure applied to certain parts of her body helped her senses to work better.

Even though the sense of touch is often compromised by excessive sensitivity, it can sometimes provide the most reliable information about the environment for people with autism. Therese Joliffe, an autistic woman from England, preferred using touch to learn about her environment because it was easier to understand things through her fingers. Her vision and hearing were distorted and provided unreliable information, but touching something gave her a relatively accurate representation of the world. She learned to do things like setting a table by feel. She did not learn to put her shoes on the correct feet until somebody held her hands and had her run her fingers down her legs and along the sides of her feet and along her shoes. Doing this enabled her to learn what the right and left shoe looked like. She had to feel them before she could see them. Her method of learning was similar to that of a blind man whose vision was restored when he was an adult. In his essay “ To See and Not to See, ” Dr. Oliver Sacks described how this man had to touch things in order to see them with his eyes. For objects like houses, which were too big to be touched all over, he touched a model, which enabled him to see the real thing.

Touching can also be used to teach words. Therese Joliffe reported that she learned reading by feeling letters. Margaret Eastham describes in her book
Silent Words
how she taught her nonverbal son to read by having him feel sandpaper letters. Many totally nonverbal children with autism touch and smell things. Some constantly tap everything. They may be doing this to figure out where the boundaries are in their environment, like a blind person tapping with a cane. Their eyes and ears function, but they are not able to process incoming visual and auditory information.

I was always able to determine where my body ended and where the outside world began, but some people with autism have severe body boundary problems. If they cannot see their legs, then they do not know where they are. Jim Sinclair, a young man with autism, reports not being able to find his body. Donna Williams describes a fractured perception of her body in which she could perceive only one part at a time. Similar fracturing occurred when she looked at things around her. She could only look at one small part of an object at a time. Donna tapped rhythmically and sometimes slapped herself to determine where her body boundaries were. When her senses became overloaded with painful stimuli, she bit herself, not realizing that she was biting her own body.

Overly sensitive skin can also be a big problem. Washing my hair and dressing to go to church were two things I hated as a child. A lot of kids hate Sunday clothes and taking baths. But shampooing actually hurt my scalp. It was as if the fingers rubbing my head had sewing thimbles on them. Scratchy petticoats were like sandpaper scraping away at raw nerve endings. In fact, I couldn't tolerate changes in clothing altogether. When I got accustomed to pants, I could not bear the feeling of bare legs when I wore a skirt. After I became accustomed to wearing shorts in the summer, I couldn't tolerate long pants. Most people adapt in several minutes, but it still takes me at least two weeks to adapt. New underwear is a scratchy horror. I wear my bras until they are falling apart, and new ones require no fewer than ten washings to make them comfortable. Even today I prefer to wear them inside out, because the stitching often feels like pins pricking my skin. Parents can avoid many problems with sensory-induced tantrums simply by dressing kids in soft clothes that cover most of their body

Auditory Problems

When I was little, loud noises were also a problem, often feeling like a dentist's drill hitting a nerve. They actually caused pain. I was scared to death of balloons popping, because the sound was like an explosion in my ear. Minor noises that most people can tune out drove me to distraction. When I was in college, my roommate's hair dryer sounded like a jet plane taking off. Some of the sounds that are most disturbing to autistic children are the high-pitched, shrill noises made by electrical drills, blenders, saws, and vacuum cleaners. Echoes in school gymnasiums and bathrooms are difficult for people with autism to tolerate. The kinds of sounds that are disturbing vary from person to person. A sound that caused me pain may be pleasurable to another child. One autistic child may love the vacuum cleaner, and another will fear it. Some are attracted to the sound of flowing, splashing water and will spend hours flushing the toilet, while others may wet their pants in panic because the flushing sounds like the roar of Niagara Falls.

Children with autism often appear to be deaf. They respond to some sounds and not to others. Jane Taylor McDonnell reported in her book
News from the Border
that her autistic son was suspected of being deaf to particular pitches and frequencies. When certain musical instruments were played, he responded, while other instruments produced no effect. I still have problems with losing my train of thought when distracting noises occur. If a pager goes off while I am giving a lecture, it fully captures my attention and I completely forget what I was talking about. Intermittent high-pitched noises are the most distracting. It takes me several seconds to shift my attention back. Several research studies have shown that rapid shifting of attention between two different stimuli is very difficult for people with autism. Eric Courchesne and his colleagues at the San Diego School of Medicine found that people with autism could not rapidly shift their attention between a visual and an auditory task. Further research by Ann Wainwright Sharp and Susan Bryson, in Canada, suggests that there is a fundamental impairment in the brain's ability to process incoming information rapidly.

When two people are talking at once, it is difficult for me to screen out one voice and listen to the other. My ears are like microphones picking up all sounds with equal intensity. Most people's ears are like highly directional microphones, which only pick up sounds from the person they are pointed at. In a noisy place I can't understand speech, because I cannot screen out the background noise. When I was a child, large noisy gatherings of relatives were overwhelming, and I would just lose control and throw temper tantrums. Birthday parties were torture when all the noisemakers went off. My mother recognized that I had difficulty with noisy gatherings of people, but she did not know why. Fortunately, I attended an elementary school that had quiet classrooms where all the students worked on the same task. I would have drowned in a cacophony of confusion if I had been in an open classroom with thirty students doing ten different projects.

Recently I was given a highly sophisticated hearing test that was developed by Joan Burleigh, in the Electrical Engineering Department at Colorado State University. The combination of her expertise in speech pathology and the electronics skills of the engineers there created a test that is able to determine the degree of autism-related hearing problems people have. People with autism usually seem to have normal hearing when tested with the standard test, which measures the ability to hear faint pure tones. My hearing tested normal on that test. The problem arises in processing complex sounds such as spoken words.

I did very badly on two segments of Joan Burleigh's test, both of which measure the ability to hear two conversations going on at once. In the first test, a man spoke a sentence in one ear and a woman spoke another sentence in the other ear. I was instructed to ignore one sentence and repeat the other. This task was hard and I got only 50 percent of the sentence correct. A normal person gets almost 100 percent correct. On the next test, two different voices said different sentences simultaneously in the same ear. I was instructed to ignore one voice and tell what the other one said. My left ear was very bad compared to my right ear. Performance in my left ear was only 25 percent of normal, whereas my right ear was 66 percent of normal. These tests showed very clearly that my ability to process and attend to one voice against the background of another voice is severely impaired. On some of the sentences I could distinguish only one or two words, usually from the middle of the sentence.