Thinking in Pictures: My Life with Autism (8 page)

It is likely that the truth about facilitated communication is somewhere between wishful hand-pushing and real communication. Carol Berger, of New Breakthroughs in Eugene, Oregon, found that low-functioning autistics could achieve 33 percent to 75 percent accuracy in typing one-word answers. Some of the poor results in controlled studies may have been due to sensory overload caused by the presence of strange people. Reports from parents indicate that a few adults and children initially need wrist support and then gradually learn to type independently. But the person must know how to read, and facilitator influence cannot be completely ruled out until wrist or arm support is removed.

Parents who are desperate to reach their autistic children often look for miracles. It's hard not to get caught up in new promises of hope, because there have been so few real breakthroughs in the understanding of autism.

The Autistic Continuum

It appears that at one end of the spectrum, autism is primarily a cognitive disorder, and at the other end, it is primarily a sensory processing disorder. At the severely impaired sensory processing end, many children may be diagnosed as having disintegrative disorder. At a midpoint along the spectrum, autistic symptoms appear to be caused by equal amounts of cognitive and sensory problems. There can be mild and severe cases at all points along the continuum. Both the severity and the ratio of these two components are variable, and each case of autism is different. When a person with autism improves because of either educational or medical intervention, the severity of a cognitive or sensory problem may diminish, but the ratio between the two seems to stay the same. What remains inexplicable, however, are rigid thinking patterns and lack of emotional affect in many high-functioning people. One of the perplexing things about autism is that it is almost impossible to predict which toddler will become high-functioning. The severity of the symptoms at age two or three is often not correlated with the prognosis.

The world of the nonverbal person with autism is chaotic and confusing. A low-functioning adult who is still not toilet-trained may be living in a completely disordered sensory world. It is likely that he has no idea of his body boundaries and that sights, sounds, and touches are all mixed together. It must be like seeing the world through a kaleidoscope and trying to listen to a radio station that is jammed with static at the same time. Add to that a broken volume control, which causes the volume to jump erratically from a loud boom to inaudible. Such a person's problems are further compounded by a nervous system that is often in a greater state of fear and panic than the nervous system of a Kanner-type autistic. Imagine a state of hyperarousal where you were being pursued by a dangerous attacker in a world of total chaos. Not surprisingly, new environments make low-functioning autistics fearful.

Puberty often makes the problem worse. Birger Sellin describes in his book
I Don't Want to Be Inside Me Anymore
how his well-behaved son developed unpredictable screaming fits and tantrums at puberty. The hormones of adolescence further sensitized and inflamed an overaroused nervous system. Dr. John Ratey, at Harvard University, uses the concept of noise in the nervous system to describe such hyperarousal and confusion. Medications such as beta-blockers and clonidine are often helpful because they can calm an overaroused sympathetic nervous system.

Autistics with severe sensory problems sometimes engage in self-injurious behavior such as biting themselves or hitting their heads. Their sensory sensations are so disordered that they may not realize they are hurting themselves. Though a recent study by Reed Elliot published in the
Journal of Autism and Developmental Disabilities
showed that very vigorous aerobic exercise reduced aggression and self-injury in half of mentally retarded autistic adults, educational and behavioral training will help almost all people with autism to function better. Early intervention in a good program can enable about 50 percent of autistic children to be enrolled in a normal first grade. Though most autistics will not function at my level, their ability to live a productive life will be improved. Medication can help reduce the hyperarousal of many low-functioning older children and help them control their behavior. Many nonverbal autistics are capable of doing simple jobs such as washing windows or routine manual work. Few nonverbal autistic adults are able to read and are capable of doing normal schoolwork.

Many parents and teachers have asked me where I fit on the autistic continuum. I still have problems with rapid responses to unexpected social situations. In my business dealings I can handle new situations, but every once in a while I panic when things go wrong. I've learned to deal with the fear of traveling, so that I have a backup plan if, for example, my plane is late. I have no problems if I mentally rehearse every scenario, but I still panic if I'm not prepared for a new situation, especially when I travel to a foreign country where I am unable to communicate. Since I can't rely on my library of social cues, I feel very helpless when I can't speak the language. Often I withdraw.

If I were two years old today, I would be diagnosed with classic Kanner's syndrome, because I had delayed abnormal speech development. However, as an adult I would probably be diagnosed as having Asperger's syndrome, because I can pass a simple theory-of-mind test and I have greater cognitive flexibility than a classic Kanner autistic. All of my thinking is still in visual images, though it appears that thinking may become less visual as one moves along the continuum away from classic Kanner's syndrome. My sensory oversensitivities are worse than the mild difficulties some Kanner autistics have, but I do not have sensory mixing and jumbling problems. Like most autistics, I don't experience the feelings attached to personal relationships. My visual world is a literal one, though I have made progress by finding visual symbols to carry me beyond the fixed and rigid worlds of other people with classic Kanner autism.

In an article written by Oliver Sacks in
The New Yorker
, I was quoted as saying, “If I could snap my fingers and be nonautistic, I would not. Autism is part of what I am.” In contrast, Donna Williams says, “Autism is not me. Autism is just an information processing problem that controls who I am.” Who is right? I think we both are, because we are on different parts of the autism spectrum. I would not want to lose my ability to think visually. I have found my place along the great continuum.

Update: Diagnosis and Education

Both parents and teachers make the mistake of thinking a diagnosis of autism, PDD (Pervasive Developmental Disorder), ADHD (Attention Deficit Hyperactivity Disorder), or Asperger's is precise. It is not precise the way a diagnosis for measles or meningitis is precise. It is a behavioral profile and different doctors and psychologists often come up with a different diagnosis because they interpret the child's behavior differently. At the time of writing this update, there is no definitive brain imaging or laboratory test for the diagnosis of autism.

Since
Thinking in Pictures
was written, the mild Asperger diagnosis is being used more and more. At the many autism conferences that I attend, I am observing more and more very smart children with a diagnosis of Asperger's. Some of these children should be in a gifted and talented class instead of being sent to special education. There are other Asperger's individuals who may need special education in their area of weakness and be in an advanced class in their area of strength. I am worried that students who would be capable of a challenging career in science, engineering, or computers may be shunted into a special education rut. In fairness to special education teachers, it is difficult to work with a spectrum that can range from nonverbal to genius.

Diane Kennedy, author of
ADHD Autism Connection
, was one of the first people to write about the confusion of Asperger's with attention deficit problems. I talk to more and more parents of children with a diagnosis that switches back and forth between Asperger's and ADHD. Many parents have told me that stimulant ADHD medications such as Ritalin (metehylphenidate) and Adderall (a combination of four different types of amphetamines) have greatly helped their children. It is likely that some individuals on the high-functioning end of the autism spectrum share traits with ADHD. Children or adults who have more classical types of autism or are nonverbal often become agitated and worse on stimulants. A trial of only one or two pills is all that is needed to determine if stimulants will be helpful or terrible.

Brain Research and Early Diagnosis

During the last ten years, there has been an increased understanding of autistic brain abnormalities. A normal child's brain grows at a steady rate. Detailed brain scans of autistic children in Dr. Eric Courchesne's lab indicated that in the first year of life there is premature overgrowth of the brain followed by an arrest of growth. Children with greater amounts of abnormal overgrowth usually have more severe autism. Research has also shown that the serotonin systems in the autistic child's brain are highly abnormal. This may explain why doses for SSRI antidepressants often need o be kept very low to prevent agitation. The degree and pattern of abnormal overgrowth will be highly variable from child to child. David Amarel at the University of California found that the variability of overgrowth was greatest in low-functioning autism. He also discovered that the immune system is often abnormal and may affect the brain.

The excess of brain overgrowth causes the infant's head to become abnormally large between the ages of one and two. Later in childhood, the head size returns to normal due to later undergrowth of the brain. Measuring a young infant's head circumference (hat size) with a tape measure could be used as a simple screening tool for detecting babies who might be at risk for autism.

Other early screening tools that are being developed test for joint attention. Joint attention occurs when normal babies orient and follow an adult's gaze. When the adult is playing a little game, asking the baby to look at the pretty birdie, the baby will look where the adult is looking. The infant at risk for developmental problems will not follow an adult's gaze. Patricia Kohl at the University of Washington is working on another screening tool. This tool will detect children at risk for developmental problems who do not orient toward normal speech sounds. This is due to being unable to hear consonant sounds. Normal babies prefer to listen to “motherese”—expressive slowed down speech where the mother enunciates the words. Autistic babies prefer computerized warbling nonspeech sounds. The test would be conducted by observing the infant to determine which sounds he orients toward.

Early Education

Both scientific studies and practical experience have fully confirmed that young children with autism need at least twenty hours a week of intensive one to one teaching by an adult. All experts agree that the
worst
thing to do with an autistic two- to five-year-old is to let him watch TV all day. There is much debate about the best early education programs. I have observed that the best teachers tend to use the same methods regardless of the theoretical basis of the program. A review of teaching methods by Sally Rogers at the University of California at Davis indicated that discrete trial or ABA (Applied Behavioral Analysis) teaching methods were the most effective to get language started. This structured highly repetitive method helps jump-start language in young two- to five-year-olds. The discrete trial programs used today are usually more natural and less rigid than the older Lovaas method. To teach socialization and play skills methods such as Greenspan's floor-time and Dr. Lynn Kern Koegel's program are more effective. Dr. Koegel's book
Overcoming Autism
is full of practical teaching methods. In the floor-time method, the teacher engages the child in many interactive games and encourages social play.

Autism and PDD are highly variable and the methods that work for each child should be used. Dr. Koegel found that some little children respond well to a highly structured Lovaas-style program and other types of autistic children, who are more socially engaged, may make more progress with a less structured program. Do not get too single-minded on one method. Use things that work and eliminate things that do not work. Sometimes a combination of methods is best. For older high-functioning children, highly repetitious programs are boring and they need lessons that will stimulate their minds. In elementary school children a child's fixation can be used to motivate learning. If a child loves trains, then read a book about a train or do a math problem involving trains.

If shooting-type video games had been available when I was little, I would have become a total addict and I may not have developed more career-related interests such as building things or flying kites and airplanes. The video games with lots of rapid movement are the most addictive. For me, rapid movement video games would have just been another way to “stim” and “zone out.” I would rather encourage the older child to become really interested in doing science on a computer or learning programming. Free software is available that will turn a kid's computer into part of a super computer that crunches numbers on a real scientific project. The May 6, 2005, issue of Science is devoted to these fascinating projects. Looking at the NASA Web site and following a space probe during its journey is a wonderful way to use computers. The problem with video games is that both parents and teachers tell me that some students get so addicted that they have no other interests. I get hypnotized by screen savers with changing patterns that move rapidly. I cannot stop looking at them and for me to get any work done I have to shut them off. Video games or screen savers that move slowly do not have this effect.

Totally banning shooting-type games is probably a bad idea, but the time playing them should be severely limited. This is especially important for a child like me. They provide an activity that the autistic child can discuss with other kids at school and this may help the child socially. However, I want to direct the autistic child's interests into more constructive activities.