Tuesday, February 20, 2007

Autism and Evidence Based Interventions: A Matter of Social Justice

I recovered my mail this morning and saw a flyer for a conference here in New York City on Autism and Early Childhood/Interventions. I was pretty interested, until I opened up the pamphlet to read what was being presented.

There is a full-day presentation on the Son-Rise program, and another one on the PLAY program. There were various break-out sessions on DIR (the Developmental, Individualized and Relationship Oriented model of Stanley Greenspan). There was also a seminar on the integration of chiropractic care in the treatment of autism.

These programs, models and various types of care have no evidence to support them. There is no study that has documented that any or all of these studies will work better than Applied Behavior Analysis, which is the treatment of choice for children with autism.

I do not have a child with autism. I cannot imagine fully the extent that these parents suffer and how they yearn for a treatment that will solve everything, immediately. However, there is no evidence that any of the treatments I mentoned before (e.g., Son-Rise, DIR, chiropractic treatment) do anything to help children with autism. In fact, since the implementation of these strategies means displacing strategies that do work (i.e., Applied Behavior Analysis), it is most possible that these new strategies could be damaging.

Imagine if you were diagnosed with a very bad case of diabetes, and you stumbled upon an ad online which reads, "Stop your insulin right now, and try this new technique, which will help you cure your diabetes". Would you do it?

Would you still try the new treatment if there were no studies to document that the treatment actually did anything to improve diabetes? OK, so how about this question: will you risk being off the treatment that works (e.g., insulin medication managament) in order to try the new medication/treatment?

The answer is no.

Not implementing evidence based interventions is also dangerous when viewed through a social justice framework. These interventions cost a great deal of money, and people who are not financially capable may be pressed into undue economic stress in order to implement programs and expensive consultations which they believe may help their children.

For example, a prominent school in Manhattan which implements DIR techniques costs over $70,000/ year. While parents can petition their school districts to re-pay the money, the school demands this money up front.

This means that people who do have a child with autism (and have been duped into believing that DIR does work) will be forced to do things they may not normally do (dip into college funds, life insurance policies, etc.) because they have been given wrong information. None of those treatments listed in the second paragraph have been demonstrated, scientifically, to work better than other treatments out there.

It is society's responsibility to ensure a basic quality of life for all its citizens, especially those with disabilities. In this society, those who have a degree and purport that these technologies work are acting unethically and immorally. Those people have a moral responsibility to report that which treatments work and which do not.

In order to do so, we need to implement ideas, interventions, and treatment programs that will work effectively and will not strain those in economic hardship.

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