Therese Joliffe also used echolalia to help her learn language. In the December 1992 issue of 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, 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 Japanese 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 pass 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 embarrassing 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 glasses, 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 association 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 classroom 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 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 grass. 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 associated 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 Institute 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 mass 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 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 classic delusions associated 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, 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 glasses, which filter out irritating color frequencies and enable her defective visual system to handle sharp contrast. The glasses 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 glasses 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 glasses; her depth perception improved, and now she can drive at night. Regular brown sunglasses 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 glasses 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 massaging 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 squ
eeze 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 prone 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. Even though a child is able to pass 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. She said ccc u pp. Auditory detail and auditory threshold (ability to perceive faint sounds) are two different processes. Some nonverbal individuals may be hearing only vowel sounds.
Thinking in Pictures: My Life with Autism Page 9
