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.
Here I am as a toddler. At that time, my retreat from touch was the only obvious sign of autism.
At two and a half, I had no speech and no interest in people. I appeared to be deaf, and often threw tantrums out of frustration at not being able to talk. Like many autistic children, I looked normal.
In high school, my life revolved around 4-H and showing horses. A deep connection with animals has been a constant in my life.
One of my mentors, Aunt Brecheen, helped me channel my fixations. This picture was taken in front of her ranch house in Arizona, where I first observed the cattle chute and made the connection between its calming pressure and my own hyperaroused nervous system.
Here is an example of the kind of cattle chute used for holding animals during veterinary procedures. Two panels apply pressure to the animal's body, and its head is restrained by a stanchion closed around its neck.
I constructed my first makeshift version of the squeeze machine out of used plywood. Here I am in the current version of the machine, which I also constructed. By manipulating the lever, I can precisely control the amount of pressure applied to my body. (Photograph copyright © by Rosalie Winard)
This is a commercially available squeeze machine manufactured by the Therafin Corporation, based on my design and used in the treatment of people with autism. (Photograph copyright © by Rosalie Winard)
One of my first designs for a curved lane leads into the dip vat at John Wayne's Red River feed yard. I figured out that cattle would move more easily through a curved lane because it makes use of their natural circling behavior.
I later applied the curved-lane design to systems for meatpacking plants. When I designed this chute, I was able to visualize the whole system in my imagination.
Here is one of my blueprints for a curved-chute system. As I draw, I visualize how each part will operate from every angle in my imagination. Many autistics share these intense visualization skills.
Even though I had little experience with drawing in perspective, I was able to come up with this blueprint in one try. Drawing skills often appear in young autistic children, perhaps as a compensation for their lack of verbal skills.
I call this my ground sculpture. In fact it is a truck loading and sorting facility in Nevada.
I love nothing more than surveying a plant I've designed where the animals are calm and quiet. One third of the cattle in the United States are moved through handling facilities that I have designed. (Photograph copyright © by Rosalie Winard)
This is an aerial view of my most intricate design, a buffalo-handling facility at the Wichita Mountains Wildlife Refuge. It took 26 drawings to complete this facility, which is operated by the U.S. Fish and Wildlife Service.
I have designed humane restraint systems for both sheep and cattle. As a result of my autism, I have heightened sensory perceptions that help me work out how an animal will feel moving through the system.
In my work on cattle behavior at Colorado State University, I sometimes like to get a cow's eye view of the situation. (Photograph copyright © by Rosalie Winard)
I met Dr. Oliver Sacks when he first wrote about me in An Anthropologist on Mars. His groundbreaking descriptions of people with various neurological disabilities have improved our understanding of the often enigmatic workings of the human mind. (Photograph copyright © by Rosalie Winard)
In 1994 I testified at a congressional hearing on the humane handling of crippled animals. (Photograph copyright © by Rosalie Winard)
I regularly lecture all over the United States on livestock handling and autism. Here I am addressing the annual meeting of the Autism Society of America. (Photograph copyright © Rosalie Winard)
A third test given by Joan Burleigh, called the binaural fusion test, showed that I have a distinct deficiency in timing sound input between my two ears. In this test a word is electronically split so that the high-frequency sounds go to one ear and the low-frequency sounds go to the other. When the low-frequency part of the word went to my right ear, I was able to hear 50 percent of the words correctly. When the low frequency was sent to my left ear, I became functionally deaf and only got 5 percent of the words correct. “ Woodchuck ” became “ workshop, ” “ doormat ” became “ floor lamp, ” “ padlock ” became “ catnap, ” “ therefore ” became “ air force, ” and “ lifeboat ” became “ lightbulb. ” While taking the test I knew that “ catnap ” and “ floor lamp ” were wrong, but I thought that “ workshop ” and “ lightbulb ” were correct. I often figure out words by the context. If I am at work on an equipment design project, I know that an engineer probably will be talking about a workshop instead of a woodchuck.
Dr. Burleigh has tested other people with autism, and they show the same pattern of hearing deficiencies. She has been able to improve the hearing abilities of some people with auditory processing problems by placing a plug that filters certain frequencies in the most impaired ear. She explained to me that the kinds of problems I have in processing speech indicate defects in my brain stem and possibly the corpus callosum, the bundle of neurons that allows the two halves of the brain to communicate. The brain stem is one of the relay stations that send input from the ears to the thinking parts of the brain.
The techniques used during some of these tests have been available for more than twenty years, but nobody used them on people with autism, mostly owing to a lot of old-fashioned thinking. Working with the electrical engineers helped Dr. Burleigh to look at sensory processing in a new light. Professionals in the field of educating autistic children have largely ignored sensory problems and favored behavioral theory. Edward Ornitz and Peter Tanguay at UCLA documented abnormalities in the brain stem of autistic children more than ten years ago. Dr. Ornitz wrote a major review of the scientific literature on sensory processing problems in autism in the Journal of the American Academy of Child Psychiatry in 1985. He stated that people with autism either overreact or underreact to different stimuli, and suggested that some of their deficits could be caused by distorted sensory input. But his important paper was overlooked by educators, who had completely embraced behavior modification methods at the time and ignored the impact of sensory problems.
My auditory problems are very mild compared with those of individuals who are more severely afflicted with autism. Some people have lost all or almost all ability to understand speech. Others have such acute hearing that everyday noises are completely intolerable. One person said that rain sounded like gunfire; others claim they hear blood whooshing through their veins or every sound in an entire school building. Their world is a confusing mass of noise. One woman said she could not tolerate the sound of a baby crying even when she was wearing a combination of earplugs and industrial sound-protector earmuffs. These symptoms are similar to those of people who have had brain stem injuries in an accident, some of whom cannot abide the smallest amount of noise or bright light. Certain types of head injuries create symptoms that partially mimic autistic auditory problems. A girl who was hit on the head during a riot told me that she had auditory problems similar to mine and could no longer ignore distracting background noise. I sometimes have small auditory tune-outs when my ears shut off and I start to daydream. If I work hard to pay attention, I can prevent these lapses, but when I get tired I have a greater tendency to tune out. Now I have control over this, but a person with greater auditory processing difficulties may not be able to gain such control.
Darren White, a young man with autism, wrote that his hearing faded in and out. Sometimes it was loud and sometimes it was soft. He described the sensation in the journal Medical Hypothesis: “ Anoth
er trick my ears played was to change the volume of sounds around me. Sometimes when other kids spoke to me I would scarcely hear, then sometimes they sounded like bullets. ” Other hearing problems can include a buzzing sound in the ears. I sometimes hear my heartbeat in my ears, or I hear a kind of electronic noise like the sound that accompanies a TV test pattern.
Some autistic children do not pay attention to spoken language. Jane Taylor McDonnell wrote that her two-year-old son could not respond to simple spoken commands. He had to figure out what people wanted by looking at their gestures and the things in the room. Autistic children with echolalia help themselves understand what has been said by repeating it; Donna Williams stated that if she didn't repeat the words, she only understood 5 to 10 percent of what was said. Children with echolalia appear to have severe speech perception problems. In Somebody Somewhere, Donna writes, “ As a child I had been echolalic and had difficulty learning the purpose and significance of language. ” She had problems with perceiving both the words and the intonation or tone of speech as a seamless whole. When she was young, she thought that the intonation of a voice was the words. If she listened to the intonation, she could not hear the words.
Thinking in Pictures: My Life with Autism Page 8
