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.
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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) [image]
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) [image]
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.
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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.
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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.
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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.
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I call this my ground sculpture. In fact it is a truck loading and sorting facility in Nevada.
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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) [image]
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.
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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.
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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) [image]
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) [image]
In 1994 I testified at a congressional hearing on the humane handling of crippled animals. (Photograph copyright by Rosalie Winard) [image]
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 n.o.body 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 doc.u.mented 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 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. 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 ma.s.s 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 earm.u.f.fs. 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. .h.i.t 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 Medical Hypothesis: " Another 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 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.
Therese Joliffe also used echolalia to help her learn language. In the December 1992 issue of Communication Communication, published by the National Autistic Society in England, she explained how she usually loses the first few words when someone speaks to her, because it takes her a while to realize that somebody has spoken. It was a long time before she figured out the purpose of speech. When she was young, speech had no more significance than other sounds. To learn that speech had meaning, she had to see words written on paper. After seeing the words, she began to recognize them in speech.
Jim Sinclair also had to learn that spoken words had meaning. He described the difficulties he experienced in High-Functioning Individuals with Autism High-Functioning Individuals with Autism, explaining that " speech therapy was just a lot of meaningless drills in repeating meaningless sounds for incomprehensible reasons. I had no idea that this could be a way to exchange meaning with other minds. "
It is likely that some of the people who are nonverbal fail to develop language because not enough speech gets through their dysfunctional auditory system. Both Joan Burleigh"s auditory test and recent research by j.a.panese scientists at the University of Tokushima School of Medicine indicate that abnormal brain stem functioning is the cause of at least some of the problems with understanding speech. Dr. Hashimoto and his colleagues found that nonverbal people with autism have smaller brain stems than normal, and D. G. McClelland and his colleagues at Queen"s University in Belfast, Ireland, found that so-called low-functioning individuals who are unable to speak show abnormalities in brain stem function when measured by a test that determines the brain stem"s ability to transmit nerve impulses.
Therapists have learned from experience that sometimes nonverbal children can be taught to sing before they can speak. In some people the brain circuits used for singing may be more normal than the circuits used for speech. Possibly the song rhythm helps to stabilize auditory processing and block out intruding sounds. This may explain why some autistic children use commercial jingles as an attempt to communicate. The pairing of a visual cue and a sung slogan makes a rhythmic and visual impression. Therese Joliffe"s parents told her that when she was a child,she would speak when certain music was played. I used to hum to myself to block out bothersome noise.
Visual Problems Some people have very severe visual processing problems, and sight may be their most unreliable sense. Some nonverbal people with autism act as though they are blind when they are in a strange place, and others have problems with visual tuneouts and whiteouts, where vision completely shuts down. During a white-out they see snow, as if they were tuned to a vacant television channel. Several autistic people with normal vision have told me that they have depth perception problems and have difficulty going down stairs. The eyes and the retina usually function normally, and the person can pa.s.s an eye examination. The problem arises in processing visual information in the brain.
As a child I was attracted to bright colors and moving objects that were visually stimulating, such as kites and flying model airplanes. I loved striped shirts and Day-Glo paint, and I loved to watch supermarket sliding doors go back and forth. When I watched the edge of the door move across my visual field, I "d get a little pleasurable chill up my back. Minor sensory processing deficits heightened my attraction to certain stimulation, whereas a greater sensory processing defect might cause another child to fear and avoid that same stimulus. Some of the problems autistics have with making eye contact may be nothing more than an intolerance for the movement of the other person"s eyes. One autistic person reported that looking at other people"s eyes was difficult because the eyes did not stay still. Face recognition also presents certain problems for many people with autism.
I often get into embarra.s.sing situations because I do not remember faces unless I have seen the people many times or they have a very distinct facial feature, such as a big beard, thick gla.s.ses, or a strange hairstyle. Barbara Jones, a woman with autism, told me that to remember a face, she has to see the person fifteen times. Barbara works in a laboratory identifying cancer cells under a microscope. Her ability to recognize patterns has made her one of the best technicians in the lab. Her visual abilities enable her to spot abnormal cells instantly, because they just jump out at her. But there is some evidence that facial recognition involves different neural systems from those used for imagery of objects such as buildings. Antonio Damasio, at the University of Iowa College of Medicine, reports that patients with damage to the ventral occipital and temporal a.s.sociation cortices may fail to identify a person"s face, but they can identify his voice. These patients can also identify a person accurately by using other visual information, such as a gait or posture, even though they fail to recognize his face. Fortunately, people who have difficulty recognizing a particular face have no difficulty discriminating between a person"s face and a dog"s face.
Fluorescent lighting causes severe problems for many autistic people, because they can see a sixty-cycle flicker. Household electricity turns on and off sixty times each second, and some autistic people see this. Problems with flickering can range from excessive eyestrain to seeing a room pulsate on and off. Fluorescent lighting in the cla.s.sroom was a big problem for Donna Williams. Reflections bounced off everything, and the room looked like an animated cartoon. Fluorescent lighting in a kitchen with yellow walls blinded her. There were also situations in which things disappeared and lost their meaning. Donna described moving quickly through a hall: " Perceptually the hall did not exist. I saw shapes and colors as it whooshed by. " When her visual system became completely overloaded with stimuli, all meaning in visual sensation was lost.
Distorted visual images may possibly explain why some children with autism favor peripheral vision. They may receive more reliable information when they look out of the corners of their eyes. One autistic person reported that he saw better from the side and that he didn"t see things if he looked straight at them.
Smell and Taste Many autistic children like to smell things, and smell may provide more reliable information about their surroundings than either vision or hearing. A survey of sensory problems in thirty adults and children was conducted by Neil Walker and Margaret Whe-lan from the Geneva Center in Toronto. Eighty to eighty-seven percent of the people reported oversensitivity to touch or sound. Eighty-six percent had problems with vision. However, only 30 percent reported taste or smell oversensitivities.
Many children with autism are finicky and will eat only certain foods. Their eating problems usually have a sensory basis. They are unable to tolerate the texture, smell, taste, or sound of the food in their mouth. I hated anything that was slimy, like Jell-O or undercooked egg whites. Many autistic children hate crunchy foods because they sound too loud when chewed. Sean Barron writes in There"s a Boy in Here There"s a Boy in Here that he was supersensitive to food texture. He would only eat bland foods-Cream of Wheat was one of his favorites, because it was " perfectly bland. " For some people, foods with strong odors or tastes can overpower an overly sensitive nervous system. Neil Walker reported that one person refused to walk on a lawn because he could not bear the smell of gra.s.s. Several autistic people have told me that they remember people by smell, and one reported that he liked safe smells such as the smell of pots and pans, which he a.s.sociated with his home. that he was supersensitive to food texture. He would only eat bland foods-Cream of Wheat was one of his favorites, because it was " perfectly bland. " For some people, foods with strong odors or tastes can overpower an overly sensitive nervous system. Neil Walker reported that one person refused to walk on a lawn because he could not bear the smell of gra.s.s. Several autistic people have told me that they remember people by smell, and one reported that he liked safe smells such as the smell of pots and pans, which he a.s.sociated with his home.
Sensory Mixing In people with severe sensory processing deficits, vision, hearing, and other senses mix together, especially when they are tired or upset. Laura Cesaroni and Malcolm Garber, at the Ontario Inst.i.tute for Studies in Education in Canada, interviewed a twenty-seven-year-old male graduate student with autism. He described difficulty hearing and seeing at the same time as his sensory channels got mixed up. Sound came through as color, while touching his face produced a soundlike sensation. Donna Williams describes herself as mono channel; in other words, she cannot see and hear at the same time. When she is listening to somebody speak, visual input loses its meaning. She is unable to perceive a cat jumping on her lap while she is listening to a friend talk. She often handles telephone conversations more easily than face-to-face meetings, because distracting visual input is eliminated. Other people with autism have also reported that the phone is a preferred method of socializing.
People with severe sensory problems have a horrible time trying to figure out what reality is. Therese Joliffe succinctly summarizes the chaos caused by autistic sensory problems: Reality to an autistic person is a confusing interacting ma.s.s of events, people, places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the pattern behind everything. Set routines, times, particular routes and rituals all help to get order into an unbearably chaotic life.
Jim Sinclair has also reported sensory mixing problems. Vision is his weakest sense, and sometimes when the phone rings he has to stop and remember what it is. Jim explains his problem in the language of computer technology: " I have an interface problem, not a core processing problem."
Donna Williams found the world incomprehensible, and she had to fight constantly to get meaning from her senses. When she gave up trying to get meaning, she would let her attention wander into fractured patterns, which were entertaining, hypnotic, and secure. In Somebody Somewhere Somebody Somewhere she writes, " This was the beautiful side of autism. This was the sanctuary of the prison. " People with severe sensory processing problems can also go into total shutdown when they become overstimulated. she writes, " This was the beautiful side of autism. This was the sanctuary of the prison. " People with severe sensory processing problems can also go into total shutdown when they become overstimulated.
Many therapists and doctors confuse autistic perceptual problems with the hallucinations and delusions of schizophrenics, but true schizophrenic delusions and hallucinations follow a different pattern. Autistic fantasies can be confused with hallucinations, but the autistic person knows they are fantasies, whereas the schizophrenic believes they are reality People with autism do not report such cla.s.sic delusions a.s.sociated with schizophrenia as believing that the FBI has planted a radio transmission in their head or thinking they "se King Henry the VIII. The problem for most autistic people is that they do not realize that their sensory processing is different. I thought other people were better and stronger than I when I couldn"t tolerate scratchy clothes or loud noise. My sensory sensitivities became much less bothersome after I started taking the antidepressant Tofranil. My senses are still easily overstimulated, but the medication calms down my reactions to stimuli.
In the book Sound of a Miracle Sound of a Miracle, Georgie Stehli describes how her life changed when a procedure called Berard auditory training greatly reduced her incredible sound sensitivity. It was a relief for her no longer to be terrified of sounds such as that made by surf on a beach. The auditory training consists of listening to music that is electronically distorted at random intervals for two thirty-minute periods for ten days. The machine also contains filters to block the frequencies where hearing is supersensitive. For about half the people who try it, it has helped reduce sound sensitivity, and for some people it has reduced buzzing and other noises in the ears. It is not a cure for autism, but it can have beneficial effects.
Donna Williams has been greatly helped by Irlen tinted gla.s.ses, which filter out irritating color frequencies and enable her defective visual system to handle sharp contrast. The gla.s.ses stopped fractured visual perception. She is now able to see an entire garden instead of bits and pieces of flowers. Tom McKean has less severe visual processing problems, but he finds that wearing rust-colored gla.s.ses with a purplish tint has stopped areas of high contrast from vibrating. Another woman with mild visual problems has also been greatly helped by rose-colored gla.s.ses; her depth perception improved, and now she can drive at night. Regular brown sungla.s.ses are helpful for some people.
It is likely that there is a continuum of visual and auditory processing problems for most people with autism, which goes from fractured, disjointed images at one end to a slight abnormality at the other. A slight visual processing abnormality may cause a child to be attracted to bright objects with contrasting colors, but a greater abnormality will cause the child to avoid them. Colored gla.s.ses and Berard auditory training are not going to help everybody. These sensory methods can be of value, but neither one is a cure.
It came as a kind of revelation, as well as a blessed relief, when I learned that my sensory problems weren"t the result of my weakness or lack of character. When I was a teenager, I was aware that I did not fit in socially, but I was not aware that my method of visual thinking and my overly sensitive senses were the cause of my difficulties in relating to and interacting with other people. Many autistic people know that there is something about them that is different, but they don"t know what it is. I only learned the full extent of my differences after reading many books and carefully questioning many people about their thinking and sensory processes. I hope that as more educators and doctors understand these differences, more children with autism will be helped from their terrible isolation at younger ages.
Sensory Integration Jean Ayres, an occupational therapist in California, has developed a treatment called sensory integration which has been very helpful for most autistic children. It aids both fully verbal children and those with little or no meaningful speech. It is especially useful for reducing touch sensitivity and calming the nervous system. Two of the main components of this treatment are application of deep pressure and slow vestibular stimulation done on a swing that moves ten to twelve times per minute. Swinging must always be fun and done as a game, and the therapist should actively encourage speech and social interaction while the child is swinging. It must never be forced. Gentle swinging helps to stabilize abnormal sensory processing.
It is easy to apply comforting deep pressure over large areas of the body to little children by placing them under large pillows or rolling them up in heavy gym mats. These procedures are most effective if they are done twice a day for fifteen minutes. They need to be done every day, but they do not have to be done for hours and hours. Depending on the children"s anxiety level, some will need access to deep pressure or swinging throughout the day, using it to calm themselves down when they become overstimu-lated. Another useful aid for calming hyperactive children is a padded weighted vest. To help autistic children sleep at night, a snug mummy-type sleeping bag provides comfort and pressure.
When I built my squeeze machine and Tom McKean made his pressure suit, we did not realize that we were inventing a therapy method that has now helped many children. Many of the behaviors of people with autism seem strange, but they are reactions to distorted or overly intense sensory input. Observation of the behaviors can provide clues to the underlying sensory problems. A child who flicks his fingers in front of his eyes may have a visual processing problem, and a child who puts his hands over his ears probably has hypersensitive hearing.
Touch sensitivity in autistic children can also be reduced by ma.s.saging the body and stroking with soft surgical scrub brushes. It is important to use relatively firm pressure, which is calming and comforting. A light tickle must be avoided, because it triggers fear in the child"s immature nervous system. A good therapist is gently insistent, gradually desensitizing the nervous system to touch. Touching is never forced, but the therapist has to be somewhat insistent; otherwise no progress will be made.
It is likely that sensory integration programs will have the greatest effect on very young children, while the brain is still developing. Touching and stroking babies when they first stiffen and pull away may be helpful as well. But even though these exercises work best on young children, they are also helpful for adults. Tom McKean reports that firmly brushing his skin with soft brushes temporarily made his body pain go away. Donna Williams told me that she hated brushing her body, but it helped integrate her senses and enabled her to see and hear at the same time. Somehow, the brushing helped her to integrate information from different senses. When pressure or rubbing stimulation is first applied, a child may resist, but gradually the nervous system will become less sensitive and the person will enjoy touching that he initially rejected.
As I developed my squeeze machine, I designed it to enhance the feeling of being embraced. Now, if I suddenly resist, I cannot pull my head out of the softly padded neck opening. In order to open the latch, I have to relax and lean forward. I am never locked in the machine, but I am prevented from suddenly pulling away from the soothing pressure. At all times I am in control of the amount of pressure applied to my body. The new design has enabled me to give in completely to the gentle feeling of being held.
Margaret Creedon from the Easter Seals Therapeutic Day School in Chicago has been successfully using the squeeze machine on young children. Over a period of months, each child gradually learns to tolerate the pressure until he or she can enjoy it for five minutes or more. Most children prefer to lie p.r.o.ne in the machine. They are never forced to use it, and they themselves always control the amount of pressure. Researchers found that children who were using the squeeze machine for more than five minutes a day were calmer and had a greater ability to inhibit a motor response than children who did not use the machine. They also performed better on a test of mechanical problem-solving. Helping autistic children fulfill that most basic human need, the comfort of touch, is like taming an animal. At first they pull away, but then they learn that touching feels good.
Update: Sensory Processing Problems During the last ten years, I have had additional tests of auditory processing and was shocked at how badly I failed one of them. In one test I was asked to discriminate the difference in pitch between two short sounds that were separated by a half-second gap. I was not able to do the task because I heard the sounds as one continuous sound. Nathalie Boddaert and her colleagues in France used a PET scanner to determine that people with autism have abnormalities in the part of the brain that processes complex sounds. One reason why some children with autism fail to learn to speak is due to a poor ability to hear auditory detail auditory detail. Even though a child is able to pa.s.s the simple pure tone hearing test, he/she may not be hearing the consonants in the words. My speech teacher helped me to hear words by enunciating the consonants of words such as cup cup. She said ccc u pp. Auditory detail ccc u pp. Auditory detail and and auditory threshold auditory threshold (ability to perceive faint sounds) are two different processes. Some nonverbal individuals may be hearing only vowel sounds. (ability to perceive faint sounds) are two different processes. Some nonverbal individuals may be hearing only vowel sounds.
Another problem that individuals with both autism and dyslexia have is slow shifting of attention. It takes much longer to shift back and forth between two different things that attract their attention. For example, if a mobile phone rings it distracts a normal person for a fraction of a second, but it takes much longer for the person with autism to shift away from the distraction. Distractions in the cla.s.sroom may prevent a person with autism from hearing the first few words of a sentence.
Echolalia Children who have difficulty hearing auditory detail will often repeat back TV commercials and videos. This is called echolalia.Parents and teachers should be happy if a child can recite a perfect commercial because the brain is programmed for speech. The reason why TV commercials are learned first is due to the fact that every time the words are said with exactly the same tone and p.r.o.nunciation.
Adults who were echolalic as children reported that when they recited a commercial, they had no idea that the words had meaning. They thought that the tone of voice was the communication. They had to be taught that the words had meaning. One method that may be effective is to make hundreds of flash cards with nouns on them. The picture of an object such as a cup and the word cup cup must be on the same side of the card. Each card is held up and the child can hear the teacher say the word and look at the picture and the printed word all at the same time. If the child says a word such as must be on the same side of the card. Each card is held up and the child can hear the teacher say the word and look at the picture and the printed word all at the same time. If the child says a word such as juice juice, give him the juice. If he says spoon spoon and you know he really was trying to ask for juice, do not correct him and give him a spoon. He/she has to learn the a.s.sociation between a word and certain objects. and you know he really was trying to ask for juice, do not correct him and give him a spoon. He/she has to learn the a.s.sociation between a word and certain objects.
Auditory Training There is much controversy about the use of auditory training to reduce sound sensitivity and improve the ability to hear auditory detail. There are many variations of these programs, but in all of the programs, the person listens to electronically modified music. The music sounds like an old-fashioned record player that is speeding up and slowing down.
Some studies have shown that auditory training is effective and others have not. This is probably due to the huge variation in the wiring problems in different autistic brains. Fortunately a large review of the literature by Dr. Sinha at the Royal Children"s Inst.i.tute in Australia showed that auditory training is safe. However, the music must not be played too loudly. Reports from parents and individuals with autism indicate that auditory training may be helpful for some individuals. Another method that may be useful for reducing sound sensitivity is recording the fire alarm or other sounds that hurt the child"s ears. The child is then allowed to play the sound back at a greatly reduced volume. It is essential that the child controls the volume and turns on the sound. Sounds a child initiates are better tolerated. Gradually the volume could be raised.
Visual Problems Many individuals on the spectrum have difficulty tolerating fluorescent lights. To them the room will flicker like a disco. Placing a lamp with an old-fashioned incandescent lightbulb next to the individual"s desk will reduce the flicker effect. Individuals with autism, dyslexia, and other learning problems often prefer to use a flat panel computer screen because it flickers less than a TV-type monitor. The best flat panels are either laptops or a really thin desk unit. Avoid desktop flat panels that have fluorescent lights inside them.
Children with visual processing problems will often look out the corners of their eyes. They do this so they can see more clearly. They are often afraid of escalators because they have difficulty judging how to step on and off of them. If visual processing problems are suspected, the child should see a developmental optometrist. This is a special eye doctor who can do therapy and exercises to help the processing problems that are inside the brain. In many of these children, the eye itself is normal but faulty wiring in the brain is causing the problem.
British researchers have done extensive studies in the use of colored overlays and colored gla.s.ses to improve reading in individuals who have visual processing problems. They have found that they are often helpful. It is important for the person to pick the exact colors they prefer. A U.S. study indicated that colored lenses had no significant effect. The poor result was probably due to everybody being given the same color.
I had a dyslexic student who had severe visual processing problems. When she tried to read, the print appeared to wriggle on the page. Colored gla.s.ses and printing her work on tan paper to reduce contrast improved both her reading and the organization of her writing. In my livestock equipment design cla.s.s 1 to 2 percent of normal college students have visual processing problems. These students absolutely cannot draw. They are unable to figure out how to draw a half circle freehand and locate the center in the correct place. When I question them they say they see waves. I always tell them about colored gla.s.ses and some of them have reported back to me that colored gla.s.ses were helpful. Some students went to a sungla.s.s store and tried reading a book with many different pale colored gla.s.ses until they found a color that made the print stop jiggling. Prescription reading gla.s.ses can be custom tinted with the preferred color. Irlen centers can help people find the precise shade that works the best. Refer to the directory in the back of the book.
Brain System Fragmentation When I met t.i.to Mukhopadhyay he looked like a typical nonverbal low-functioning teenager with autism. When he came into the room he grabbed a magazine and smelled it. His mother taught him to type on a keyboard by constant prompting to make him pay attention. His typing is truly independent and he was not touched by a person while he was typing a sentence. He had to be prompted after he typed each short sentence to keep him on task and to prevent him from running across the room. To make sure that he was not using prerehea.r.s.ed phrases, I asked t.i.to to tell me about a picture he had never seen before. The picture was from an advertis.e.m.e.nt and it showed an astronaut on a horse. t.i.to immediately typed " Apollo 11 on a horse. " This convinced me that t.i.to was not being cued by his mother. t.i.to"s description of how he thinks and feels indicates that the different subsystems in his brain are not working together. He has written about a thinking self and an acting self. When I questioned him about visual perception he typed that he saw fragments of color, shapes, and motions. He is not able to hear and see at the same time.
In the normal visual system, the brain has circuits for color, shape, and motion. These circuits must work together to create stable images. t.i.to"s description of how he sees things may be an indicator that these systems are working independently. His descriptions may also indicate that he has localized brain systems that are working but the connections among the different brain areas are highly abnormal. I asked t.i.to what it was like before he could type. He typed out one word: emptiness emptiness. t.i.to"s writings have more emotion that the writings of many fully verbal people on the autism/Asperger spectrum. I have observed that sometimes emotions are more normal in individuals who have either fragmented sensory processing or poor verbal skills. t.i.to"s achievements indicate that some individuals who appear to be low-functioning have good brains hidden inside. It is likely that many nonverbal individuals will not have t.i.to"s abilities. It depends on which brain circuits get connected.
Deep Pressure Therapists have found that providing deep pressure by rolling a child in mats or putting him under pillows can calm the nervous system. Discrete trial training (Applied Behavioral a.n.a.lysis) and speech therapy are sometimes more effective if done while the child is experiencing deep pressure. The calming effect may help the miswired nervous system to perceive speech better. Many of these children"s brains are like poor mobile phone signals. The speech may fade in and out.
Pressure applied by a padded, weighted vest can help a hyperactive child sit still. For best results, the vest should be worn for twenty minutes and then taken off for twenty minutes. Sleeping can often be helped by using a weighted blanket to apply soothing pressure. Steve Edelson and his colleague at the Autism Research Inst.i.tute in San Diego found that the squeeze machine had a calming effect.
An amazing experiment done with Great Danes who bit out of fear showed that deep pressure is calming. Nancy Williams and Peter Borchelt placed aggressive Great Danes in a box filled with grain to apply pressure all over their bodies. The dog"s head protruded through a padded opening. While the dogs were in the box, other dogs and strangers were brought up to them. The calming pressure reduced aggressive snarling or attempts to bite. The dog"s behavior was improved for several months after treatment. The pressure reduced the dog"s anxiety. This experiment shows the calming effects of pressure. When pressure is used on individuals with autism, it should be done as a fun activity and never forced onto the child or adult.
Why is Progress on Sensory Problems Slow?
I am frustrated by the fact that some teachers and therapists still do not recognize the importance of sensory over sensibility. It must be difficult for them to imagine a totally different way of perceiving the world where sounds and lights are super intense. A question people ask is if a child is so sensitive to sounds why don"t his own screams bother him? The reason is because sound sensitivity occurs only at specific sound pitches that vary from child to child. Fortunately there are more books available now on sensory over sensitivity problems. Research by S. J. Rogers and others at the Department of Psychiatry, University of California at Davis clearly shows that autistic children have abnormal sensory reactivity. They were also more likely to have abnormal responses to taste and smell compared to children with other developmental abnormalities. Individuals who scream and tantrum every time they go into a large supermarket have the most severe problems with sensory oversensitivity They probably feel like they are inside the speaker and the light show at a rock concert. Problems with sensory overload get worse when a person is tired. These individuals will need a quiet environment that is free of fluorescent lights and distractions in order to learn.
There is a need for research on the differences in brain function in children and adults with autism. If the area of the brain that is miswired could be identified, then therapy could be targeted at it. It is likely that abnormalities in brain wiring will vary greatly between individuals. One individual may have a visual processing problem and another one may not.
4.
LEARNING E EMPATHY.
Emotion and Autism TO HAVE FEELINGS of gentleness, one must experience gentle bodily comfort. As my nervous system learned to tolerate the soothing pressure from my squeeze machine, I discovered that the comforting feeling made me a kinder and gentler person. It was difficult for me to understand the idea of kindness until I had been soothed myself. It wasn "t until after I had used the modified squeeze machine that I learned how to pet our cat gently. He used to run away from me because I held him too tightly. Many autistic children hold pets too tightly, and they have a disproportionate sense of how to approach other people or be approached. After I experienced the soothing feeling of being held, I was able to transfer that good feeling to the cat. As I became gentler, the cat began to stay with me, and this helped me understand the ideas of reciprocity and gentleness.
From the time I started using my squeeze machine, I understood that the feeling it gave me was one that I needed to cultivate toward other people. It was clear that the pleasurable feelings were those a.s.sociated with love for other people. I built a machine that would apply the soothing, comforting contact that I craved as well as the physical affection I couldn "t tolerate when I was young. I would have been as hard and as unfeeling as a rock if I had not built my squeeze machine and followed through with its use. The relaxing feeling of being held washes negative thoughts away. I believe that the brain needs to receive comforting sensory input. Gentle touching teaches kindness.
I always thought about cattle intellectually until I started touching them. I was able to remain the neutral scientist until I placed my hands on them at the Swift plant and feedlots in 1974. When I pressed my hand against the side of a steer, I could feel whether he was nervous, angry, or relaxed. The cattle flinched unless I firmly put my hand on them, but then touching had a calming effect. Sometimes touching the cattle relaxed them, but it always brought me closer to the reality of their being.
People have a need to touch animals in order to connect with them. I still vividly remember an experience I had while handling cattle at the Arlington feedlot in Arizona. We were working them through a squeeze chute to give them vaccinations. I was operating the chute and giving the animals their vaccinations. When I gave an injection, I always placed my hand on the animal "t back, which had a calming effect on me. This calmness seemed to be reciprocal, because when I was calm, the cattle remained calm. I think they sensed this, and each animal walked quietly into the chute. I mentally asked him to relax so he would not get hit by the head restraint. Everything remained calm until the side of the squeeze chute broke and knocked over a bucket. This got me and all the cattle completely rattled for the rest of the afternoon. The spell had been broken.
The application of physical pressure has similar effects on people and animals. Pressure reduces touch sensitivity. For instance, gentle pressure on the sides of a piglet will cause it to fall asleep, and trainers have found that ma.s.saging horses relaxes them. The reactions of an autistic child and a scared, flighty horse are similar. Both will lash out and kick anything that touches them. Wild horses can be desensitized and relaxed by pressure. Recently I watched a demonstration of a pressure device for breaking them. The horse used in the demonstration had been sold by a rancher because he was unrideable, and he kicked and reared when people approached. The effect of the pressure device on his nervous system was similar to that of my squeeze machine. Pressure helped this frightened horse to overcome his intense fear of being touched.
The machine was built by Robert Richardson of Prescott, Arizona, and it used sand to immobilize the horse gently as it applied pressure. The wild horse was placed in a narrow stall similar to a horse trailer, with two gentle horses in adjacent stalls to keep it company because wild horses will panic when they are alone. The horse "t head protruded through a padded opening in the front of the stall, and a rear pusher gate prevented him from backing up and pulling his head inside. Sand from an overhead hopper flowed down the stall walls and slowly filled up the stall so that the horse hardly felt it until he was buried up to his back. Slow application of pressure is the most calming. It wasn "t until the sand came up to his belly that he jerked slightly, but then he appeared to relax. He seldom put his ears back, which is a sign of fear or aggression, and he never tried to bite anybody. He was alert and curious about his surroundings, and he acted like a normal horse in a stall, even though his body was now completely buried. He was free to move his head, and eventually he allowed people to touch his face and rub his ears and mouth. Touching that had been intolerable was now being tolerated.
After fifteen minutes, the sand was removed from the stall by draining through a grating in the floor. The horse now tolerated being touched on the rest of his body. The effect of the pressure lasted for thirty minutes to one hour. During that time the horse learned to trust people a little more and to experience touch as a positive sensation.
The effects of gentle touching work at a basic biological level. Barry Keverne and his colleague at the University of Cambridge in England found that grooming in monkeys stimulated increased levels of endorphins, which are the brain "s own opiates. j.a.panese researchers have found that pressure on the skin produces a relaxed muscle tone and makes animals drowsy. Pigs will roll over and solicit scratching on their bellies when rubbed. The drive for contact comfort is great. Harry Harlow "s famous monkey experiments showed that baby monkeys that had been separated from their mother needed a soft surface to cling to. If a baby monkey was deprived of contact with either a real mother or a mother subst.i.tute such as the soft fluffy paint roller Harlow gave them, then its capacity for future affection was weakened. Baby animals need to feel contact and comfort and to have normal sensory experiences to develop normally. Harlow also found that gentle rocking helped prevent abnormal, autistic-like behavior in baby monkeys who were separated from their mothers. Every parent knows that rocking calms a cranky baby, and both children and adults enjoy rocking. That "s why rocking horses and rocking chairs continue to sell well.
The old theory of autism, popular until the 1970s, placed blame on the " refrigerator mother, " whose supposed rejection of the child caused the autism. The psychologist Bruno Bettelheim "s theories, popularized in his book The Empty Fortress The Empty Fortress, held that psychological difficulties caused autism. We now know that autism is caused by neurological abnormalities that shut the child off from normal touching and hugging. It is the baby "s abnormal nervous system that rejects the mother and causes it to pull away when touched. There is the further possibility that secondary damage to the brain, caused by a defective nervous system, adds to the child "s further retreat from normal comforting touch.
Studies of the brain show that sensory problems have a neurological basis. Abnormalities of the cerebellum and the limbic system may cause sensory problems and abnormal emotional responses. Margaret Bauman and her colleagues at Ma.s.sachusetts General Hospital autopsied the brains of people with autism and found that both the cerebellum and the limbic system had immature neuron development. Eric Courchesne also found abnormalities in the cerebellum on MRI brain scans. Research on rats and cats has shown that the center part of the cerebellum, the vermis, acts as a volume control for the senses. As early as 1947, Dr. William Chambers wrote an article in the American Journal of Anatomy American Journal of Anatomy reporting that stimulating a cat "s vermis with an electrode caused the cat to become supersensitive to sound and touch. A series of abnormalities in lower brain centers probably causes sensory oversensitivity, jumbling, and mixing. reporting that stimulating a cat "s vermis with an electrode caused the cat to become supersensitive to sound and touch. A series of abnormalities in lower brain centers probably causes sensory oversensitivity, jumbling, and mixing.
Tests done in many different laboratories around the world clearly indicate that people with autism have abnormal results on brain stem function tests, and that nonverbal people with severe impairments have the most abnormal results. Neurological problems occur during fetal development and are not caused by psychological factors. However, it "s possible that if a baby does not receive comforting touch, the feeling and kindness circuits in the brain shrivel up.
Autism and Animal Behavior Zoo animals kept in barren concrete cages become bored and often develop abnormal behavior such as rocking, pacing, and weaving. Young animals placed alone in such environments become permanently damaged and exhibit strange, autistic-like behavior, becoming overly excitable and engaging in stereotypical behaviors such as self-mutilation, hyperactivity, and disturbed social relations. The effects of sensory deprivation are very bad for their nervous systems. Total rehabilitation of these animals is extremely difficult.
Animal and human studies show that restriction of sensory experiences causes the central nervous system to become hypersensitive to sound and touch. The effects of early sensory restriction are often long-lasting. Puppies reared in empty concrete kennels become very excited when they hear a noise. Their brain waves still show signs of excessive excitability six months after they are removed from the kennel and housed on a farm. The brain waves of autistic children show similar signs of excessive arousal. Further experiments with rats have ill.u.s.trated the damaging effects of restricting normal sensory experiences. Tr.i.m.m.i.n.g the whiskers on baby rats causes the parts of the brain that receive sensations from the whiskers to become oversensitive, because there are no incoming touch sensations. This abnormality is relatively permanent; the brain areas are still abnormal after the whiskers grow back. It may be that the autistic child "s abnormal sensory functioning causes his or her brain to develop secondary abnormalities because of distorted sensory input or a lack of such input. And these distortions may affect what are considered normal emotions.
The environment a young animal is raised in will affect the structural development of its brain. Research by Bill Greenough, at the University of Illinois, indicated that rearing rats in cages with toys and ladders to play with increased the number of dendrites, or nerve endings, in the visual and auditory parts of their brains. I conducted research as part of my Ph.D. dissertation that indicated that pigs engaging in abnormal rooting, owing to being raised in a barren plastic pen, grew extra dendrites in the part of the brain that received sensations from the snout. Construction of this abnormal "dendrite highway " may explain why it is so difficult to rehabilitate zoo animals that have engaged in years of stereotypical pacing. This is why it is so important to start therapy and education when an autistic child is young, so that developing nerve endings can connect in the right places.
Autistic Emotions Some people believe that people with autism do not have emotions. I definitely do have them, but they are more like the emotions of a child than of an adult. My childhood temper tantrums were not really expressions of emotion so much as circuit overloads. When I calmed down, the emotion was all over. When I get angry, it is like an afternoon thunderstorm; the anger is intense, but once I get over it, the emotion quickly dissipates. I become very angry when I see people abusing cattle, but if they change their behavior and stop abusing the animals, the emotion quickly pa.s.ses.
Both as a child and as an adult, I have felt a happy glee. The happiness I feel when a client likes one of my projects is the same kind of glee I felt as a child when I jumped off the diving board. When one of my scientific papers is accepted for publication, I feel the same happiness I experienced one summer when I ran home to show my mother the message I had found in a wine bottle on the beach. I feel a deep satisfaction when I make use of my intellect to design a challenging project. It is the kind of satisfied feeling one gets after finishing a difficult crossword puzzle or playing a challenging game of chess or bridge; it "s not an emotional experience so much as an intellectual satisfaction.
At p.u.b.erty, fear became my main emotion. When the hormones. .h.i.t, my life revolved around trying to avoid a fear-inducing panic attack. Teasing from other kids was very painful, and I responded with anger. I eventually learned to control my temper, but the teasing persisted, and I would sometimes cry. Just the threat of teasing made me fearful; I was afraid to walk across the parking lot because I was afraid somebody would call me a name. Any change in my school schedule caused intense anxiety and fear of a panic attack. I worked overtime on my door symbols because I believed that I could make the fear go away if I could figure out the secrets of my psyche.
The writings of Tom McKean and Therese Joliffe indicate that fear is also a dominant emotion in their autism. Therese stated that trying to keep everything the same helped her avoid some of the terrible fear. Tony W, another man with autism, wrote in the Journal of Autism and Developmental Disorders Journal of Autism and Developmental Disorders that he lived in a world of daydreaming and fear and that he was afraid of everything. In my case the terrible fear did not begin until p.u.b.erty, but for some autistic people it starts in early childhood. Sean Barron reported that he felt pure terror during the first five or six years of his life. The highly structured environment of the cla.s.sroom reduced some of his fear, but he was often afraid and anxious in the hallways. that he lived in a world of daydreaming and fear and that he was afraid of everything. In my case the terrible fear did not begin until p.u.b.erty, but for some autistic people it starts in early childhood. Sean Barron reported that he felt pure terror during the first five or six years of his life. The highly structured environment of the cla.s.sroom reduced some of his fear, but he was often afraid and anxious in the hallways.
The intense fear and anxiety I used to experience has been almost eliminated by the antidepressant medication I "ve been on for the last thirteen years. The elimination of most of my fears and panic attacks has also attenuated many of my emotions. The strongest feeling I have today is one of intense calm and serenity as I handle cattle and feel them relax under my care. The feeling of peacefulness and bliss does not dissipate quickly like my other emotions. It is like floating on clouds. I get a similar but milder feeling from the squeeze machine. I get great satisfaction out of doing clever things with my mind, but I don "t know what it is like to feel rapturous joy. I know I am missing something when other people swoon over a beautiful sunset. Intellectually I know it is beautiful, but I don "t feel it. The closest thing I have to joy is the excited pleasure I feel when I have solved a design problem. When I get this feeling, I just want to kick up my heels. I "m like a calf gamboling about on a spring day.
My emotions are simpler than those of most people. I don "t know what complex emotion in a human relationship is. I only understand simple emotions, such as fear, anger, happiness, and sadness. I cry during sad movies, and sometimes I cry when I see something that really moves me. But complex emotional relationships are beyond my comprehension. I don "t understand how a person can love someone one minute and then want to kill him in a jealous rage the next. I don "t understand being happy and sad at the same time. Donna Williams succinctly summarizes autistic emotions in n.o.body Nowhere n.o.body Nowhere: "I believe that autism results when some sort of mechanism that controls emotions does not function properly, leaving an otherwise relatively normal body and mind unable to express themselves with the depth that they would otherwise be capable of. " As far as I can figure out, complex emotion occurs when a person feels two opposite emotions at once. Samuel Clemens, the author of Tom Sawyer Tom Sawyer, wrote that "the secret source of humor is not joy but sorrow, " and Virginia Woolf wrote, "The beauty of the world has two edges, one of laughter, one of anguish, cutting the heart asunder. " I can understand these ideas, but I don "t experience emotion this way I am like the lady referred to as S. M. in a recent paper by Antonio Damasio in Nature Nature. She has a damaged amygdala. This part of the brain is immature in autism. S. M. has difficulty judging the intentions of others, and she makes poor social judgments. She is unable to recognize subtle changes in facial expression, which is common in people with autism. In developing many varied, complex ways to operate the squeeze machine on myself, I keep discovering that slight changes in the way I manipulate the control lever affect how it feels. When I slowly increase the pressure, I make very small variations in the rate and timing of the increase. It is like a language of pressure, and I keep finding new variations with slightly different sensations. For me, this is the tactile equivalent of a complex emotion and this has helped me to understand complexity of feelings.
I have learned how to understand simple emotional relationships that occur with clients. These relationships are usually straightforward; however, emotional nuances are still incomprehensible to me, and I value concrete evidence of accomplishment and appreciation. It pleases me to look at my collection of hats that clients have given me, because they are physical evidence that the clients liked my work. I am motivated by tangible accomplishment, and I want to make a positive contribution to society.
I still have difficulty understanding and having a relationship with people whose primary motivation in life is governed by complex emotions, as my actions are guided by intellect. This has caused friction between me and some family members when I have failed to read subtle emotional cues. For instance, it was difficult for my younger sister to have a weird sister. She felt she always had to tiptoe around me. I had no idea that she felt this way until years later, when she told me about her childhood feelings toward me. Motivated by love, my mother worked with me and kept me out of inst.i.tutions. Yet sometimes she feels that I don "t love her.