To the Editor:
I appreciate the intelligence and compassion with which Sonya Rudikoff treats my book, A Child Called Noah, in her essay, “Why Some Children Don’t Speak” [October 1972]. But I think she goes completely astray in her discussion of whether society has any responsibility after all to help such children as my autistic son. At issue here is neither a complicated question of a social responsibility growing out of a chain of causation nor the theoretical effect of usurpation of parental decision that arises with any governmental intervention, as she would have it. Rather, it is simply a question of civil rights. The statutes and laws that mandate public education do not contain restrictive convenants limiting their application and enforcement to “normal children” only. A child such as my son, no matter what diagnostic ghetto he may be assigned to, is entitled to a public education. Yet ironically children who by their very nature require more of an educational effort are expected by “society” to settle for less.
Indeed, the question of social responsibility that concerns me at the moment is an entirely different one from the one Miss Rudikoff raises: I am currently in the process of moving from my home in northern Westchester because my son is not being offered an educational program of more than three hours per day—a direct and flagrant violation of New York state law. And I’ve been wondering more and more about the ethics and efficacy of my moving away instead of staying and fighting an unjust status quo—just as I know my grandfather wondered, when, as a member of a discriminated-against minority group, he decided to flee Czarist Russia.
Croton-on-Hudson, New York
To the Editor:
. . . Our son is a carbon copy of “a child called Noah.” But in our case it is a blessing that we are not affluent, educated, and sophisticated like the Greenfelds. At the outset we decided that we would never allow him to be placed in an institution; we would raise him just like other children. We did not panic when the experts at Johns Hopkins told us that he was a vegetable. Instead of dumping him on the mercy of the District of Columbia, we refused to admit that he was a bother, notwithstanding our sleepless nights. We had to keep his fingernails cut down to the skin to prevent him from ripping himself apart. As he grew, he would dash about making weird sounds like a caged wild animal while he clapped his hands continuously. He was afraid to walk on grass. The world outside the house panicked him, but I carried him everyplace I went.
When he was around twelve the tide began to change. Now he is a sweet, gentle, and beautiful young man. He has learned to restrain himself. The only personal attention he requires is what is given to so-called normal six-to-ten-year-olds. Since he understands language so well, I am hopeful that someday he will learn to talk. He understands his handicap, and he appreciates what has to be done for him. . . .
Horace C. Case
To the Editor:
. . . One major cause of autism is the sustained, yet often unrecognized, anxiety experienced daily by significant persons in the child’s environment; this extremely high anxiety is communicated to and experienced by the child. . . . Autism is in part a response to the terror which the child experiences at a time when his conceptual tools are inadequate to . . . express the difficulty. Early signs of autism (often overlooked) are signals of distress within the family system including high levels of anxiety. All of the published accounts cited by Sonya Rudikoff give ample evidence to support this inference.
Conditioning techniques require parents and the autistic child to focus their attention on simple, concrete, minute tasks. They work because this focus fits neatly with the observable effects which anxiety produces, namely, the narrowing of the perceptual field and the focus upon detail. . . . The conditioning tasks “start where the learner is” (a principle of education); a relevant detail is provided as the focus of attention, and since its scope fits with the narrowed perceptual field . . . it becomes possible for the child . . . to accomplish something and to reduce his anxiety. . . .
The families of autistic children should try family therapy, with each member looking at the family as a system that has patterns and strategies . . . which perpetuate the anxiety-laden environment to which the autistic child accommodates in his desperate attempt to survive. . . .
Hildegard E. Peplau
Graduate Program in Advanced Psychiatric Nursing
New Brunswick, New Jersey
To the Editor:
I am a senior in high school, and until I read Sonya Rudikoff’s article I had always found autistic or mentally-ill children repellent. But the article showed that such children, when treated properly, can at times achieve normal behavior. I hope that others who feel as I did will read the article. . . .
Bay City, Michigan
Sonya Rudikoff writes:
I am glad that Linda Heintskill was moved to reconsider her impressions of autistic and mentally-ill children. Descriptions do tend to underline the weird, unbelievable, repellent features of their behavior. Obviously, much more can be said. Anyone who has lived or worked with such children knows also of their sweetness, their affectionate natures, their resourcefulness. Indeed, it is the harassed parents, such as Horace C. Case, who so often discern gentleness, intelligence, acuity of perception, memory feats, strong feeling. How often are such traits observed in institutions? Mr. Case, like many parents, almost feels he would never have known of them if his child had not been cared for in the family. Those parents who are willing to undergo sleepless nights and severe burdens, because they care so much, are also the ones who will be most grateful for the sweetness, gentleness, and beauty the child reveals: it seems to make their work worthwhile.
Probably any family with an autistic child examines itself as a system, and thus engages in a kind of family therapy, if only because in order to cope with the difficulties occasioned by the child’s illness, the entire family must organize itself to explore its own purposes and patterns. Clearly there is a psychology of the family of the autistic child, just as there is an individual psychology of the mother of the autistic child, the father, the siblings, the grandparents. Those close to the child can be helped by individual therapy, and probably the family can be helped by family therapy as currently practiced. It is an important part of the theories of family therapy that the afflicted one is not ill uniquely, in isolation, but that, rather, the illness is a signal of the entire family’s distress; the most vulnerable one betrays visible symptoms, but other members of the family may be actually just as ill, if not more so.
It sems to me, though, that Dr. Hildegard E. Peplau reveals the great difficulty and impracticality of this therapy for autistic children when she speaks of “each member looking at the family.” The autistic child cannot “look at the family” as others do, he is not in a position to share with others even a simple language of agreed-upon terms and meanings, or to isolate an experience in order to examine it, not to speak of being able to modify and modulate his own behavior in order to engage in the shared tasks of family therapy. The rest of the family may go each week to the therapist and explore intensively their complex interaction of the previous week, but the autistic child doesn’t join in this enterprise. His inability to participate even minimally raises a question about this therapy’s usefulness for autism. And, in the meantime, while the family concentrates its energies on exploring itself as a system, the child isn’t learning anything.
The National Society for Autistic Children has been extremely energetic in pressing for the inclusion of autistic and handicapped children in educational programs throughout the country. In state legislatures, state and federal offices, and local agencies, the Society and its supporters have done so much to make educational facilities available to children with special needs, and so much else that needs to be done, that I do not want to say anything which would seem to ignore or dispute these needs and rights. As Josh Greenfeld observes, these children are often deprived of what is due them; if they do not adapt easily to the education society offers all its children, they may find, in many parts of the country, that nothing else has been devised for their special requirements, and they are thus effectively deprived of their right to a public education. Thanks to NSAC, many parents have been able to learn more about what their children are entitled to expect.
I assume that those who are thinking about autistic children, the parents, and their representatives in NSAC, are looking beyond the immediate question of assuring each child his right to an appropriate education, and are examining the teachers’ colleges, the training programs in special education, and the dissemination of educational ideas. What are the ideas used now in the teaching of these special children? What ideas are being introduced into the training programs for future application? It would be a hollow victory indeed if the rights of handicapped children to special education were secured and then that education proved wrong.