Tuesday, August 21, 2007

As Autism Diagnoses Grow, So Do Number Of Fad Treatment

As Autism Diagnoses Grow, So Do Number Of Fad Treatments, Researchers Say
Science Daily — Ineffective or even dangerous fad treatments for autism, always a problem, seem to be growing more pervasive, according to researchers who studied the problem.

“Developmental disabilities like autism are a magnet for all kinds of unsupported or disproved therapies, and it has gotten worse as more children have been diagnosed with autism,” said James Mulick, professor of pediatrics and psychology at Ohio State University .”

“There's no cure for autism, and many parents are willing to believe anything if they come to think it could help their child.”

Mulick chaired a symposium on “Outrageous Developmental Disabilities Treatments” Aug. 20 in San Francisco at the annual meeting of the American Psychological Association. The symposium included presentations by several of Mulick's students at Ohio State who participated in a graduate seminar on fad treatments in autism.

Tracy Kettering, a doctoral student in special education at Ohio State , said a Google search for the phrase “autism treatment” yields more than 2.2 million matches.

“You get hundreds of different types of therapies that come up, and many have quotes from parents that claim a particular therapy ‘cured' their child,” Kettering said.

“It's no wonder that parents want to believe. But very few of these treatments have any evidence to support them.”

The number and range of fad treatments has seemed to grow in recent years as more children have been diagnosed with autism, said Mulick, who is also editor of a book on fad treatments called Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice.

Mulick said when he began treating autism in the 1970s about 3 children in 10,000 were said to have autism. Now, reports are 1 in 166 children have the condition. The number of cases has mushroomed because of better diagnoses, and a changing definition of autism that includes a broader range of disorders.

Some of the newer, more popular fad treatments for autism involve special diets or nutritional supplements. Megadoses of Vitamins C and B6 are popular, as well as supplements with fatty acids like omega-3s.

A casein and/or gluten-free diet, which involves eliminating dairy and wheat products, has also gained favor with some parents.

While many of these treatments have never been adequately studied, that doesn't mean they aren't promoted.

“One of the characteristics of fad treatments is that they are discussed in the media and on the internet, where many parents can be exposed to them,” said Anne Snow, an Ohio State psychology graduate student.

And while some fads are simply ineffective, others can even be dangerous, Mulick said. Chelation therapy, which involves taking medicines to remove the heavy metal mercury from the body, has reportedly led to the death of at least one autistic boy receiving that treatment. Chelation therapy was also touted years ago as a new treatment against some forms of cancer but was eventually shown to have no helpful effect.

Many parents try multiple approaches, hoping at least one will help. Kettering said one survey she found suggests that the average parent of a child with autism has tried seven different therapies.

“We're not saying that all of these treatments don't work or that they are all dangerous,” Kettering said. “But the research hasn't been done to suggest that most of them are effective or even safe.”

Many of the treatments may have just enough basis in scientific fact to attract attention, even if the treatment itself is unproven.

For instance, most scientists believe that many cases of autism are caused by genetic mutations, and some mutations can be caused by various chemicals that we encounter in our everyday lives, Mulick said.

But still, there is no evidence that any particular chemical causes mutations that lead to autism, as some have claimed.

“There's a shred of truth in the rationale presented for some fad treatments, and that is enough for some people to go with,” he said.

Another reason that fad treatments persist has to do with the natural course of autism, Mulick said.

Autism, like many conditions, has cycles in which symptoms get worse and then get better. Parents tend to search for treatments when symptoms are getting worse, and when their children get better – as they do in the normal course of disease – parents credit the new therapy.

“It's natural to have this bias that the therapy you're trying has had some positive effect,” he said. “People want to believe.”

While other treatments are still being investigated, right now the only therapy that has been shown to have a long-term positive affect on autism is called Early Intensive Behavioral Intervention, Mulick said.

EIBI is a highly structured approach to learning, in which children with autism are taught first to imitate their teachers. But this treatment is very time-consuming and labor intensive. It involves one-on-one behavioral treatment with the child for up to 40 hours a week for several years.

“It's expensive and difficult for many parents to use,” Mulick said. “That's got to be one reason other treatments look attractive to them.”

Mulick said other treatments and therapies are being studied. However, it takes years to test treatments for autism because of the nature of the disease and problems with proving effectiveness.

“Autism studies are a long, time-consuming, and expensive process,” Mulick said. “And some of the fad treatments being used today would never be approved for testing – they are just too dangerous.”

In addition to Mulick, Kettering and Snow, other presenters at the symposium included Ohio State graduate students Cristan Farmer, Megan Norris, Andrea Witwer and Jill Hollway.

Note: This story has been adapted from a news release issued by Ohio State University.

This article really pissed me off. I mean really! I mean, drop everything to sit and vent about it. All this "research" demonstrates is simply one thing, human nature. Why do people assume this would be different in the world of autism? A crazy and dangerous way to spend research money. I shudder to think about how much something like this cost, and how many programs deemed worthy by this team(ABA)could have paid for. A STATE school for crying out loud! (I'd like to point out that I'm not an ABA hater. ABA was a cornerstone to my son's recovery).

It's only natural for people to make a buck by taking advantage of a person that's vulnerable. Advertising 101 teaches marketers how to sell basic emotions; hope, inspiration, coolness, and many other false truths. Take a look at ANY advertising to see the same thing. Who doesn't know the saying "buyer beware"? Weight loss, home products, cars, hair loss, kitchen gadgets, detergent, and all kinds of gimmicks have infiltrated our lives, everywhere we turn. As a society, we've quietly accepted them, each person filtering out what they choose to filter out. Determining what's valid from what isn't.

Does this mean that all people serving the autism community are evil and only have profit margins on their minds? I don't think so. Many people end up in the world of Autism due to autism happening in their personal life. Many well-meaning doctors and therapists that are "on to something" cannot contain their excitement, and their passion gets the best of them when promoting their success. Everyone starts out with just a handful of successes. After all, who HASN'T gotten out-of-control when excited about something potentially big, really big.

This "research" shows us only one thing, that the topic of Autism is no different. There is only one internet that serves us all on ALL topics! Ohio State needs to spend their time on other topics, or really getting down to business with understanding the complex world of Autism. The GFCF diet has "gained favor"? Are you kidding me?

True, buyer beware is a reality in the world of Autism. Articles like this only does damage by confusing parents that are trying to help their children. Many parents read something like this, a lazy black and white article, and decide to not try all other treatments other than ABA. Where has Ohio State been? I mean really? Human being are shysters. Whatever!

What is crystal clear is that science has failed our children in numerous ways. Ohio State could do better than an effort such as this, a lame one-sided study that makes portrays parents like stupid sheep throwing their money left and right. This is an old, beaten path - the medical community versus parents and cutting edge alternative treatment providers.

I think most parents would agree it would be easier to defer to the medical community, but that's no longer possible. Most parents have no choice but to be at the helm of their child's health and therapy treatments. But look where that's gotten us? Has science figured out what causes Autism? At least one cause? Where would we be without treatments in their infancy? At one time ABA was, as well as any other scientifically backed treatment for a disorder or a disability.

The saddest part of all of this, is our future educators coming out of the Ohio State program. Hopefully they are learning about viable treatment options. I hope they learn that Autism is very complex with little rhyme or reason to "what works". Simply, there are numerous opportunities for success. They are in a very powerful position, and my hope is that parents are fully supported.


mcewen said...

I think I'd have tried almost anything in the beginning - when you're at your most vulnerable. Luckily we choose a more conventional route.
Best wishes

Ashley loves Leo said...

I was too nervous to try anything at all at the beginning.

Funny, it's after Leo was stabilized that we tried "hocus pocus" treatments. A couple we use long term now for health maintenance (Bioset, homeopathy).

Whenever I talk to a new parent, or a parent at a crossroads, my advice is always to try the most viable treatment options first, and to try them one at a time, so you know what works.

Every day I feel lucky that I didn't have to move to be near excellent therapists. Not always the case, to have choices.

You always make me think Madeline! Ash