Several years ago, facilitated communication was hailed as a major breakthrough, and wild claims were made that the most severely handicapped autistic people had completely normal intelligence and emotions. Fifty scientific studies have now shown that in the vast majority of cases, the teacher was moving the person's hand, as if it were a planchet on a Ouija board. The teacher was communicating, instead of the person with autism. A summary of forty-three studies in the Autism Research Review showed that 5 percent of nonverbal, severely handicapped people can communicate with simple one-word responses. In the few cases where facilitated communication has been successful, someone has spent many hours teaching the person to read first.
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.