Editorial: Recovery is Possible
Autism Research Review International, 1994, Vol. 8, No. 2, page 3
Bernard Rimland, PhD
Autism. The word seems synonymous with controversy. There is hardly a statement that can be made about autism that has not been challenged. The most recent controversy concerns the concept of recovery. Conventional wisdom has held, from the very beginning, that autism is a life-long disability and that, while some individuals may improve, autism is always there.
Conventional wisdom notwithstanding, we are beginning to hear increasingly about recovery. The matter deserves our close attention. Reports of recovery, partial recovery, or near-recovery, come from several sources:
Mysterious spontaneous recovery. It hasn't happened often, but it has happened often enough for the phenomenon to be worth noting: over the past 25 years I have received a handful of letters from parents which read something like this: “Please remove our address from your files. Our child has continued to improve so greatly—we don't know why—that now he is no longer considered autistic. We think it best that he never even find out that he was considered autistic, so we don't want any mail coming into our home with the word `autism' on it ....” In a few of these cases we have received follow- up letters, years later, telling us that the formerly autistic child has now graduated from high school, or college, or has gotten married, but “please don't write to acknowledge this letter.”
Personal accounts. In recent years there have appeared a number of books authored by autistic persons who have recovered significantly, if not completely. Temple Grandin, whose book Emergence: Labeled Autistic (1986) has elevated her to celebrity status, has earned a Ph.D. in animal science. She lectures extensively as an expert on both cattle handling procedures and autism. While she is an independent and respected professional, she acknowledges that her recovery from autism is not complete.
Donna Williams' story of partial recovery from autism is told in her two books Nobody Nowhere (1992), and Somebody Somewhere (1994). Like Temple Grandin, Donna's writings have earned her celebrity status. She has appeared on national television in both the U.S. and the U.K. Like Temple, she acknowledges—and is handicapped by—many symptoms of autism. Like Temple, she forges gallantly ahead, accomplishing more with her life than most “non-handicapped” people can hope to achieve.
Mother-child accounts. Several mothers have written chronicles of the recoveries of their autistic sons, with chapters or afterwords written by the sons themselves. In Face to Face (1986) Lurline Morphett describes her son Simon, at 24, as a “whole person to whom the label of autism is entirely inappropriate.” Simon, in his chapter, refers to himself as “a [formerly] hopeless kid recovering to become quite normal.”
In Fighting for Tony (1987), Mary Callahan tells how taking Tony off milk transformed him from autistic to normal (see ARRI 3/2). Now, seven years later, he is a very normal teenager.
Judging from There's a Boy in Here, the book Sean Barron co-authored with his mother Judy Barron (1992), Sean also seems to have left autism behind him. In closing his mother writes, “... now he has begun giving us advice on our problems—good advice.” She refers to his “successful struggle against autism.”
Annabel Stehli's widely-known book The Sound of a Miracle (1991) tells of her daughter Georgie's speedy recovery after treatment with Auditory Integration Training (AIT). A TV “docudrama” is underway.
Jane McDonnell's book News From the Border (1993) includes an afterword by her son Paul, in which he says, “I am not as autistic as I was, but autism still shows in certain ways.” But the ways are minor, and judging from both the book and the McDonnell's appearance on the Sonya Live television show, Paul has come a very long way from his autism. (Like Sean Barron, Paul McDonnell studied autistic behavior on films, e.g. Rain Man, and television, in order to learn what behaviors needed to be abandoned in his quest for normality.)
As you may surmise from its title, the newly published book Autism: From Tragedy to Triumph (1994), by Carol Johnson and Julia Crowder, also reports a dramatic success story. Here again is an afterword, written by Drew, the formerly autistic young man. The afterword is, in actuality, a biographical essay written by Drew for a second-year psychology class. He does not mention autism nor ever having been autistic. In a recent phone call from his mother, I learned that Drew is now considered normal in all respects. He has normal friendships and seems to be leading a very normal life. What is particularly interesting about Drew is that he was one of the autistic patients enrolled in Ivar Lovaas' Young Autism Program at UCLA in the 1970s. The book includes log entries from the therapy sessions at UCLA.
The Young Autism Project. Much of the current controversy on recovery began in 1987 with publication by Ivar Lovaas and his colleagues of the results of their intensive early intervention program, starting with children under 4 years of age, which resulted in 47% of the children being successfully mainstreamed. Lovaas was quoted in a New York Times interview as saying, “If you met them now that they are teenagers, you would never know that anything had been wrong with them.” Similar results have been reported for children entering the Princeton Child Development Institute program before the age of 5 by Fenske, Zalenski, Krantz, and McClannahan, in 1985. A later followup study of the subjects in the Lovaas study, by McEachin et al. (1993) in which peer ratings, interviews and other assessment techniques were used, supported the earlier findings that these children were indistinguishable from their peers.
Let Me Hear Your Voice. The controversy became much more clearly focused with the publication in 1993 of the book Let Me Hear Your Voice by Catherine Maurice, in which the author describes how her two autistic children, both diagnosed as severely autistic by noted psychologists, psychiatrists and neurologists in New York City, were brought to what appears to be complete recovery by the very intensive application of early intervention techniques, particularly the Lovaas behavioral program. Catherine Maurice includes extensive recent quotations from the children's teachers and speech-language pathologists which depict children who are not only functioning normally, but exceptionally well.
Those who don't believe recovery from autism is possible usually argue that the diagnosis must have been faulty—it wasn't autism to begin with. Since Let Me Hear Your Voice depicts the children's severe autism so clearly and graphically, and since the documentation of their diagnosis by expert after expert is so incontrovertible, the conclusion that these children have in fact recovered is especially hard for many to accept. I have personally seen the Maurice children on several occasions, most recently just a week or two before this writing. I can say without qualification that these children are in fact doing beautifully. They are great kids, with no sign whatever of autism.
A psychologist, a psychiatrist, and a pediatric neurologist who were among the specialists who had diagnosed the Maurice children as autistic initially have written a paper, soon to be published, indicating that the “children show no residua of autism.” What are we to make of all this?
There will, of course, always be those who persist in saying that recovery from autism is impossible (after all, autism is, by definition, a life-long disability) and that the supposed recovery of the many individuals described above must therefore be only illusory. But as a great philosopher once observed: “If it looks like a duck, walks like a duck, and quacks like a duck, it must be a duck.” So say I for the concept of recovery in autism: if they look recovered, if they act recovered, and if they are thought to be recovered, they are recovered. Perhaps some of these “recovered” individuals may have some quirks and odd behaviors. If so, so what? Who doesn't?
I am more than willing to accept, and to celebrate, recovery from autism. Let's have more of it!
Some speculations on the how and why of recovery from autism will be the subject of a later editorial.
Note: Some of the books mentioned above are available from ARI. The prices given include U.S. postage. California residents, add 7 3/4% tax. Emergence: Labeled Autistic: $15; Nobody Nowhere, $23; Somebody Somewhere, $16; News from the Border, $24; Autism: from Tragedy to Triumph, $15; and Let Me Hear Your Voice, $16.