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Searching for the miracle

Parents, in a desperate quest to fix what they've been told is broken in their children, are willing to try (or pay) anything to help their kids.

By Valle Dwight

Laura Shumaker was struggling with her son’s autism diagnosis back in 1993 when she saw an Oprah episode in which a parent announced that her child had been cured of autism by using a “listening program.”

“I thought, ‘Oh, that’s it — he’s just sensitive to sound,’” Shumaker said. Her son’s therapist recommended against the treatment, which had no research to back it.

“But Peter and I were already carried away by the wave of information we had gathered on auditory training.... 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,’” Shumaker wrote in her 2008 memoir, A Regular Guy: Growing Up With Autism.

The driving force

That search for the one thing that might “flip the switch” for a child with autism — or other conditions such as attention-deficit/hyperactivity disorder (ADHD) or learning disabilities like dyslexia — drives parents to explore, research, experiment, and buy countless remedies in the hopes that something will cure their child.

Shumaker and her husband shelled out $3,000 for the auditory treatment, on top of what they were already spending on speech therapy and a psychologist, but they figured it was a good investment. “We thought it would cure him,” she said in an interview with GreatSchools.

Might this be the one?

And that’s the key to why parents are vulnerable to such claims. What parent wouldn’t do whatever she could to end her child’s problems? And how would she feel if maybe, just maybe, that one thing would make a difference?

Though there is no cure for autism, the claims continue. A Google search on “autism cures” turns up almost 25 million hits.

“The problem with scams is that they offer parents their wildest dreams about having a child who is ‘normal,’” says Rory Stern, the publisher of ADHD Family Online. “Everyone is looking for a quick fix.”

Ultimately, when the "listening therapy" didn’t work for Matthew, Shumaker was able to come to terms with the fact that his autism was a lifelong issue. “I got a grip,” she said. Even so, in the years since, Shumaker and her husband have tried vitamins, therapy, and medication to help their son.

“It’s your job as a parent to do everything you can,” she said. “If you don’t, you feel guilty.”

Various treatments for autism have made national news (chelation, gluten-free diets, hyperbaric chambers, and more), but it’s not just autism that attracts claims of miracle cures. Over the years there have been many programs that trumpet miraculous results for children with AD/HD, Down syndrome, and dyslexia.

Reading between the lines

But anyone who promises a cure for dyslexia is “misguided,” said Elizabeth Ditz, a parent who has tracked and commented on dozens of so-called miracle cures on her blog, I Speak of Dreams. Or “they’re lying through their teeth,” she added with a laugh.

Ditz’s daughter, now 20, was diagnosed with dyslexia when she was in second grade. A self-described “information nerd,” Ditz read everything she could get her hands on concerning the reading disability. Armed with the knowledge of what dyslexia is, she said her “BS meter” went off frequently when she read about assorted claims of cures.

When Ditz went to a presentation about a weeklong intensive program near her home in northern California, those alarms were ringing madly. “He was marketing a program where after a week it was: ‘kid fixed, problem solved,’” she said. And a claim like that, backed by parent testimonials but no scientific studies, is hard to resist. The problem is, according to Ditz, “it’s a lot of time, a lot of money, and it doesn’t work.”

Ultimately, Ditz and her husband sent their daughter to a school that used an Orton-Gillingham approach. Her daughter is now in her second year of college.

Ditz doesn’t discount that any number of interventions might help a child with a learning disability, but there is no one thing that will take away the diagnosis. “With an LD, there is natural improvement,” she said. “I’m not sure what causes the improvement. It could be the focused attention; it could be a natural maturation.”

Looking for the quick fix

Rory Stern, who works with kids with AD/HD and their parents, thinks that the cure claims are able to flourish because there is a basic lack of education about what these learning difficulties are.

“We are a weakness-based society,” he said. “We look for what’s wrong, so parents get the idea that ‘my child is broken, and I need to fix him.’”

He encourages parents to tune out all the “noise” about their child’s diagnosis and to focus on his or her specific needs. Then find a specialist in that area to help guide them.

When families come to him saying they want to try some new therapy or supplement, Stern gets them to focus on their goal — and set realistic expectations for any treatment.

Ultimately, while many therapies, medication, and even supplements might help a child with a disability, that child still needs to work on basic skills related to his or her disability, Stern points out. No vitamin in the world is going to teach a kid to read.

December 2009

Valle Dwight is a reporter, writer, and mother of two school-aged boys. She has written for many magazines, including FamilyFun, Wondertime, and Working Mother.

Comments from readers

"The author is 100% right. Stop trying to fix or cure your children and accept them for who they are and help them with their challenges! There is no Cure for Autism! Deal with it! Trying to cure your child is telling them that you don't like them or anything about them. Don't believe me, talk to autistic adults and teens, they'll tell you. Autism is not a dirty word or something that should be shunned! It can be a wonderful thing if nurtured right and supported. Think Einstein, Motzart, ect. Your child needs your understanding and support not experimental treatments and pain. Yes by all means give them physical, occupational, speech, music, developmental, or hippotherapies, but not anything barbaric or mean just because you heard it would cure your child. And the diets are just plain mean! As an adult with Autism and several children with Autism, I'm telling you to accept your child and help them with their struggles as you would any other child. Get online, go to facebook o! r twitter and meet autistic adults and teens, learn from them. They can give you insight as to why your child is doing something or what your child is feeling or trying to convey, and they will give you tips to work with your child. Listen to the Autistic population because we are here to stay and we are angry at the treatment children are enduring right now and angry at how the world is viewing us and our disorder! Open your eyes to your child. Get down on their level and watch and listen to them and a door will open up. Don't make your child conform to your life, conform to your child's life and you will be let in and loved, after all isn't that what is important, to be and feel loved?!"
"For the previous author to even write, '... (to say) there is no cure for autism, is criminal' just illustrates that person's ignorance. AUTISM CAN NOT BE CURED. Period. I feel sad for the reader who has the perception that this is the equivalent of telling the parents there is no hope. There are profoundly effective treatments in the forms of stimulants, cognitive training, social interaction, play therapy, speech, and more. Frankly some forms of autism don't need to be 'cured' any more than neurotypical people need to be cured of their ignorance. "
"To make a blanket statement that 'There is no cure for autism', is criminal. Cures may be rare, they may be different and varied for each child, but some can be found. To try and tell parents there is NO cure takes away hope, and without hope, all is lost. It would be more proper to indicate that there are likely a multitude of contributors to the condition, and therefore likely a multitude of potential solutions that parents must sift through. Are there scam artists or hucksters? Sure. But don't teach that there is NO cure and take away all hope for these parents and their unfortunate children."
"Thanks for the informative article, Ms Dwight. I particularly liked the way you understand the extreme lenghts the parent will go for their child, from love to guilt and the ranges in between. And finally getting to the fact that these are not, and never have been 'broken' children. They are perfect, and there are educators/professionals committed to guide them (us) and set attainable, satisfying, and rewarding goals. Thanks again."