RETRIEVED FROM THE SHADOW--WORLD OF AUTISM, KATY FINDS HER VOICE
Reporting: Jan Mason Text: Martha Pay
"She was the first to treat me like a human being instead of a pitiful creature," Katy wrote of her doctor, Martha Welch.
My jailer is persistent and seldom off my case. Sometimes she scares the words right out of me.
Katy Haigh wrote those lines last summer, when she was 10, as part of a poem called "Hard Holding." The jailer of the poem is her mother, Mary Ann, 38. The "hard holding" of the title is the therapeutic method used for more than eight years to treat Katy's autism. Until this past year, the child had kept almost complete silence, giving up a word or a phrase only in response to the greatest emotional demands. But in her writings she analyzes her illness with the perception of an experienced clinician, a mystery in keeping with autism's many contradictions.
I think I'm being active but my mouth doesn't talk. My legs don't jump, my hands don't reach out. Even my eyes see only half of what they could.
As Katy prepares to enter sixth grade in the Norwalk, Conn., school system, she hovers at the edge of a reality she has been cautiously testing for years, fearful of being overwhelmed by a normal life of speech and human contact. She is especially alarmed that her main support and connection the loving "jailer" to whom she has been tied since birth--will abandon her too soon, or not at all.
My biggest fear is that I will lose Mommy before I can be free to be me.
Autism, which affects 15 of every 10,000 children in the U.S., is a disorder of extreme withdrawal. It makes victims of both children and parents. Most experts today argue that autism, like schizophrenia, is almost certainly a physiological disorder. Theories as to its cause range from an inheritable structural weakness in the X chromosome to chemical imbalance. In clinical practice, however, and in the painful daily experience of its victims and their families, autism remains a maddening collection of symptoms: a refusal to make eye contact; absence of speech or a senseless parroting of the speech of others, called echolalia; apparent deafness or blindness; mental retardation; repetitive behavior that ranges from teeth-tapping to head-banging.
"When I decided to show what I could play on the piano," Katy wrote, "I chose
Mozart. Then I went back to random pounding." Katy avoids looking at what she is doing because, In her words, it makes it easier to escape into unreality.
Progress comes in small increments, like letting her mother dress her.
Sometimes school is difficult for Katy and she tries to retreat.
Moving the autistic child beyond those symptoms into something approaching normal life has been the frustrated ambition of generations of parents, medical specialists and psychologists. But the limited success that is achieved with either behavior modification or drug therapy--the two most widely used treatments--has led many to conclude that autism cannot be cured. With 95 percent of all autistic adults eventually requiring institutionalization, such a pessimistic view has not been unwarranted. But to judge from the progress of Katy Haigh--whose written eloquence redefines autism as a terrifying choice between safety and freedom--it seems premature.
Like many other autistic children, Katy was diagnosed from birth as deaf, dumb and retarded. For 13 months she received phenobarbital for supposed brain seizures. At the age of one she was operated on for an eye condition called double strabismus that had made it impossible for her to focus. Throughout her daughter's infancy, Mary Ann Haigh was told repeatedly that Katy was profoundly retarded. Only after she took Katy to Dr. Martha Welch's Mothering Center in Cos Cob, Conn., did any other diagnosis seem possible.
Since 1978 Welch, 43, has been teaching parents and children the technique she calls holding. A mother sits or lies face-to-face in an embrace with her child and demands a physical contact that is usually missing in daily life. By means of this frequently combative hugging (sometimes lasting a half hour, at other times stretching to an exhausting four hours or more), 50 percent of Welch's patients, she says, have managed to move into a normal life. Although critics argue that in the absence of controlled studies, no real evaluation of the doctor's work is possible, the Welch method is widely used in Europe.
Holding has saved my sanity and given me a chance to be free and love in a real growing way. I need it and sometimes want it.
It is all too easy for Katy to slip away, even during a holding. Her mother screams at her, "Katy, we want you HERE! Stay with it. Stay with US" Her mother's force is effective in getting through to Katy.
Full of energy, Katy and her friend Ema giggle together in the woods after a dance lesson. "To act like friends act" is the challenge for Katy. "I hate
inappropriate behavior," she wrote to one schoolmate.
The games girls play are new to Katy, who with the help of Ema comes to them like an adult trying to learn new habits.
By the time Mary Ann learned of the center from a friend, Katy was 22 months old, an apparently unseeing and frighteningly unfeeling child. Their first holding, Mary Ann later wrote, "was shocking. My child was transformed from a catatonic blob into a raging, screaming, biting fighter. She came alive more violently than I ever imagined she could." It was clear that Katy could be contacted through holding, but it took years before any progress was evident. "She feels the extent of my pain and connects," says Mary Ann. "After we had seen a video tape of one of our holdings, Katy wrote to me: You look like you are brutalizing me when you are really saving me."
For the last four years Katy has attended a regular elementary school--on a shortened program with her mother at her side--and has done well. She has probably spoken fewer than a dozen words to her classmates. Katy is no longer an unreachable inmate of her illness, but unless she decides to converse easily, she will be one of Welch's failures. In a letter to a sympathetic official in the Norwalk school system, Katy wrote of her future with eloquence: I hope to shed my shell soon and emerge whole, intelligent-looking, happy, helpful, wonderfully creative--mommylike.
I’ve always wanted a close friend and even a sister but never wanted or had the courage to act like friends act.