Autism: “Miracle” cures remembered

Matthew (right) with brother Andy

A look back at “The Dark Ages” when early intervention was a guessing game:

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

 

1993

During winter break in Matthew’s first-grade year, and without the support of the experts who were currently working with Matthew, Peter and I decided to try the miracle cure: Auditory Training.

“Did you see that girl on Oprah?” I asked Dr. Hoffman. “I don’t usually watch Oprah, but one day I flipped it on while I was folding the laundry. Anyway, through this amazing treatment, this girl went from autistic and functionally retarded to gifted.”

The theory behind auditory training, simply put, was that some children who suffer from learning and behavioral disorders, including autism, are hypersensitive to certain frequencies of sound. Auditory training was designed to normalize hearing and the ways in which the brain processes auditory information.

“We figured that since Matthew is hypersensitive to sound, auditory training might cure him. Do you know anyone who has tried it?”

Dr. Hoffman had not seen the girl on Oprah, but Christy, the speech therapist, said she knew some parents who had tried the training.

“It’s very expensive,” she added. “Some claim that they have seen some improvement, but none of my clients has been ‘cured’ by it. There has been no clinical proof that it works, so I’m skeptical.”

“Let me put it this way,” I said. “If it were your child, would you try it?”

“No.”

But Peter and I were already carried away by the wave of information we had gathered on auditory training since the young girl’s appearance on the Oprah show. What if Matthew’s autism was caused by hypersensitivity to sound, and what if this one treatment improved his life forever? And how guilty would we feel if someday, some specialist said, “If only he’d had auditory training when he was six. . . ”

“I know that if I heard everything as acutely as Matthew does,” Peter said, “I’d have a hard time focusing on anything else. I’d go mad.”

Matthew started the training just two weeks after the birth of our third son, John. As soon as it became clear that Matthew’s disability would be lifelong, I was desperate to have a third child. “We don’t want our boys to be viewed as ‘the normal one and the one with the problem,’” I told Peter. “Can you imagine what a burden it would be for Andy down the road?”

Peter agreed with the idea of having a third, but thought we should find out if we were at risk of having another child with autism. The responses from the experts were mixed, and Peter was ambivalent, but I pressed, reasoned, and begged and finally we took a chance. John was the most beautiful of my three babies and appeared normal, but we would have to wait a while to see whether he had escaped autism.

The closest auditory training practitioner we could find was in Marin County, about an hour’s drive north on a good day. Peter agreed that he would be in charge of taking Matthew to and from the ten-day program, during which Matthew would listen to music wearing headphones fitted with a special electronic device. The device filtered frequencies from the music, sending modified sounds into Matthew’s ears and training his auditory nerve to process sound normally. Each day of the training, Matthew would wear the headphones for thirty minutes in the morning followed by a three-hour break, and thirty minutes in the afternoon.

“Matthew and I can go out for lunch and for a hike between sessions,” said Peter. “It will be fun.”

The training facilitator suggested that before the training we put headphones on Matthew at home as much as possible to get him used to it.

“And if he doesn’t get used to it, don’t worry, we can make the headphones so loose that he won’t know he has them on. And we have plenty of toys to keep him busy.”

“But will the treatment work if the headphones are loose?”

“Oh, don’t worry, they won’t be too loose!”

Even with a two-week-old baby, I went along for the ride the first day of training. The “facilitator,” who was also a psychotherapist, had sounded quite professional on the phone, but I wanted to meet her in person. “I work with my husband,” she had said. “He is also a therapist, and great with kids.”

 

The husband greeted us when we arrived and ushered us into his office. He was tall and thin and wore a full beard, Birkenstocks, and a leather vest over a paisley shirt.

“It smells like garbage in here,” said Matthew. The husband opened a window.

The office reminded me of a low-rent version of Dr. Hoffman’s.

Instead of a sleek, leather chair there was a beat-up brown recliner, and next to it a large beanbag chair with toys strewn all around it. I looked at the certificate on the wall.

“You do hypnotherapy, too?” I asked, and he nodded.

“That’s my bread and butter. My wife will give Matthew an audiogram before we start, another during the middle of treatment, and then a final one when treatment has been completed. We’ll make adjustments to the filter along the way to get the best result. You should see some results immediately following the last treatment, but the full effect won’t be apparent until six months after the treatment is completed.”

“Do you guarantee your work?” asked Peter.

“Yes. After the six-month period, we’ll do another audiogram and more treatment if he needs it.”

If you’re still here in six months.

“Can I see the headphones?” I asked. “I’d just like to see how they fit Matthew.”

The husband sat Matthew in the beanbag chair and put the headphones on him. Then he turned on the music and Matthew started laughing—a crazy, scary laugh.

“See?” said Peter. “He likes it.”

I knew what Peter was thinking. We have already put $1500 into this thing, fifty percent of the total, and damn it, it’s gonna work.

“Where is your wife?” Peter asked, and a red-headed beauty wearing a gauzy peasant dress came floating in breathlessly.

“Sorry I’m late,” she said. “My cat is sick.”

Yeah, well I’ve got a two-week-old baby, and I’m early.

“Do you have any questions?” she asked.

The husband had answered our questions, so we said no.

Peter and I took our seats in the waiting room. Baby John slept, and Andy opened his new coloring book. I glanced through the vertical blinds into the room where the wife was giving Matthew his audiogram, the husband by her side looking befuddled.

“Peter?” I whispered. “Look.”

“Oh, man,” he sighed. “If this pair cures Matthew, that would be the miracle.”

 

Peter and I studied Matthew carefully once he had completed the training, watching for his reaction to sounds and for any improvement in his behavior.

“I think he’s little better,” said Peter one evening as the family sat down to dinner. Then as if on cue, Matthew jumped up from the table and ran outside. We followed him and found him smiling intensely as he looked skyward at the white trail of an airplane. Then he jumped up and down, laughing and drooling, his hands flapping.

“They said we might not see the full effect for six months,” Peter said as I shook my head.

“Yeah, we’ll have to mark that on the calendar.”

 

Any improvements that were gained by auditory training, real or imagined, were erased in an instant on the third Monday of Matthew’s second-grade year, two months after the magical six- month deadline. Someone pulled the school fire alarm, and Matthew refused to take his hands off his ears—for three whole months. A special meeting was called at school; even Dr. Hoffman attended, but no one was able to get Matthew to take his hands off his ears.

Finally, Matthew’s Grandpa surprised him at school one morning, took Matthew’s wrists and said, “Matthew. It’s safe now.”

And that was that.

NOTE:

Auditory Training (Now referred to as Auditory Integration Therapy) is still available today, and while some individuals have reported improvements in auditory processing resulting from AIT, there are no credible studies that demonstrate its effectiveness or support its use.

To learn more about treatment for autism spectrum disorders, CLICK HERE.

You might also be interested in the following articles:

Ten Autism Myths Debunked: Wrong Planet

Why autism moms act the way they do

10 things I wish someone told me about parenting a child with special needs: Liane Kupferberg Carter

 

 

 

 

 

About the author

Laura Shumaker is a nationally recognized writer, autism and disabilities advocate. Her essays have appeared in many places, including the New York Times, CNN, NPR, and in a popular autism and disabilities blog for The San Francisco Chronicle. She’s the mother of three terrific sons, and her oldest son, Matthew, is the subject of her book A Regular Guy: Growing Up with Autism.

Comments

  1. Liane Carter says

    Laura, I found myself nodding in agreement reading this. You capture the desperation, the skepticism even the humor. We pursued AIT too — with similar non-results. Thanks for writing this. Thanks, too, for the shout out about my article (above.)
    xo
    Liane

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