because his brain is not able to process and understand sights and sounds around him. There are also children who are mixtures of the two kinds of autism.
Children of the first kind will respond well to intensive, structured educational programs that pull them out of the autistic world, because their sensory systems provide a more or less accurate representation of things around them. There may be problems with sound or touch sensitivity, but they still have some realistic awareness of their surroundings. The second kind of child may not respond, because sensory jumbling makes the world incomprehensible. Gently intrusive teaching methods will work on some children who lose their speech before age two if teaching is started before their senses become totally scrambled. Catherine Maurice describes her successful use of the Lovaas program with her two children, who lost speech at fifteen and eighteen months of age, in her book, Let Me Hear Your Voice. Teaching was started within six months of the onset of symptoms. The regression into autism was not complete, and her children still had some awareness. If she had waited until they were four or five, it is very likely that the Lovaas method would have caused confusion and sensory overload.
My experience and that of others has shown that an effective teaching method coupled with reasonable amounts of effort should work. Desperate parents often get hooked into looking for magic cures that require ten hours a day of intensive treatment. To be effective, educational programs do have to be done every day, but they usually do not require heroic amounts of effort. My mother spent thirty minutes five days a week for several months teaching me to read. Mrs. Maurice had a teacher spend twenty hours a week on the Lovaas method with her children. In addition to participating in formal educational programs, young autistic children need a structured day, both in the school and at home. Several studies have shown that twenty to twenty-five hours a week of intensive treatment which required the child to constantly interact with his teacher was most effective. A neurologist gave my mother some very good advice: to follow her own instincts. If a child is improving in an educational program, then it should be continued, but if there is no progress, something else should be tried. Mother had a knack for recognizing which people could help me and which ones could not. She sought out the best teachers and schools for me, in an era when most autistic children were placed in institutions. She was determined to keep me out of an institution.
A controversial technique called facilitated communication is now being used with nonverbal people with autism. Using the technique, the teacher supports the person's hand while he or she taps out messages on a typewriter keyboard. Some severely handicapped people have problems with stopping and starting hand movements, and they also have involuntary movements that make typing difficult. Supporting the person's wrist helps to initiate motion of the hand toward the keyboard and pulls his fingers off the keyboard after he pushes a key to prevent perseveration and multiple pushing of a single key. Merely touching the person's shoulder can help him initiate hand movements.
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
