(This column was first published in the January 8, 2001 Buffalo News.)
Autism is a merciless mental illness, cruel to the developing child and punishing to the child's parents and caregivers. Autistic children live in unrealistic inner worlds, unable to communicate or relate with others and unable to respond to affection. They strongly resist change -- even moving a chair can call forth an uncontrollable tantrum. They often repeat mindless acts like rocking or head-banging over and over or they echo the last word or phrase said to them.
Your heart has to go out to all the members of families that include an autistic child. Raising any youngster is a difficult task; raising an autistic child is infinitely harder and returns far fewer rewards.
Researchers have so far been unable to find a cure for this terrible affliction. Treatment is difficult and indefinitely prolonged. Parents, teachers and therapists encourage social adjustment and speech development through positive reinforcement techniques -- providing rewards for good behavior. But even under the best of circumstances family members cannot help but feel guilty and inadequate.
Some assistance for families and support for further research is provided through organizations like the Autism Society of America and the Doug Flutie, Jr. Foundation for Autism but family members are often best served by participating in local support groups where they share with others their difficulties and their small successes.
Unfortunately some ever-hopeful caregivers have been taken in by a seemingly miraculous autism treatment called facilitated communication. The therapist, supposedly responding to the autistic child's lead, guides the patient's finger over a keyboard to type out messages. Here are two examples of responses provided by the major proponent of this method, Syracuse University Professor Douglas Bilkin: "MY MOTHER FEELS IM STUPID BECAUSE IH CANT USE MY VOICE PROPERLY" and "I AM VERY UPSET BECAUSE I NEED FACILITASION. I DON'T WANT TO DEPEND ON PEOPLE." Some messages express love for parents but in a few cases the responses have testified to the child's having psychic power or even in at least one case to his having been molested.
Noted "fringe-watcher" Martin Gardner, in his column about this technique in the journal Skeptical Inquirer, describes a test of facilitated communication that was shown on PBS Frontline in 1993. When, unknown to the facilitator, an autistic child and his facilitator were shown different pictures, the child typed a description of the picture seen only by the adult.
But Gardner does not claim that these therapists were charlatans who willfully deceived their clients. I agree. Gardner describes facilitators being "devastated by the revelation that they had been deceiving themselves for years." Rather, they were taken in by their own strong motivation to help afflicted children. Like Ouija board manipulators or dowsers, they were led, not by the autistic child's wishes, but by their own subconscious.
Gardner provides a way to demonstrate this effect. Tell someone that a pendulum formed by tying a ring to the end of a string will swing in a straight path over a male's hand and in an oval path over a female's hand. Then have the person test this. The pendulum will very often perform as ordered, but only with prior knowledge of what it is "supposed to do."
Sadly, Professor Bilkin and some of his followers continue to offer this intervention despite its having been discredited by such organizations as the American Psychological Association.
As if this nonsense were not bad enough, Gardner described in an earlier article how famous psychologist Bruno Betelheim blamed autism on mothers with cold, unloving personalities. How much additional punishment this now completely discredited theory meted out to already suffering mothers can only be contemplated.-- Gerry Rising