Thinking in Pictures: My Life with Autism (13 page)

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 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.

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 classroom 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 pronunciation.

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
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
, give him the juice. If he says
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 association 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 Institute 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 glasses 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 glasses 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 class 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 glasses and some of them have reported back to me that colored glasses were helpful. Some students went to a sunglass store and tried reading a book with many different pale colored glasses until they found a color that made the print stop jiggling. Prescription reading glasses 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 Tito 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 prerehearsed phrases, I asked Tito to tell me about a picture he had never seen before. The picture was from an advertisement and it showed an astronaut on a horse. Tito immediately typed “ Apollo 11 on a horse. ” This convinced me that Tito was not being cued by his mother. Tito'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. Tito'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 Tito what it was like before he could type. He typed out one word:
emptiness
. Tito'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. Tito'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 Tito'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 Analysis) 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 Institute 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
L
EARNING
E
MPATHY

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 associated 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 massaging 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. Japanese 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 substitute 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
, 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 Massachusetts 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
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 illustrated the damaging effects of restricting normal sensory experiences. Trimming 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 passes.

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 puberty, fear became my main emotion. When the hormones hit, 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
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 puberty, 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 classroom 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.