Thursday, December 10, 2009

Parents cries for help might include dangerous interventions, but who knows.

Below are links I posted to stories talking about “dangerous autism interventions”. I know some people will wonder “Why would parents try that? That doesn’t make any sense?” But it does, every parent wants a magic bullet that will cure their child or more importantly every parent wants hope. The picture captures what Autism feels like to Nicky, who wouldn't want to keep their child from living in that place.

When no one can tell a parent how to help their child, most of us do what they can. Because the worst thing we can imagine is doing nothing, so often we will try anything. Unless you have been through it or something like it, it's probably impossible to fully comprehend what it’s like to have a child diagnosed with a severe illness that has NO known cause or cure, yet it’s an epidemic. Or what’s it’s like to have an illness as all consuming as autism, where there is no medical protocol or system that takes you in and tells you what to expect, what to do and how to do it. For me it's been a journey in the dark where I blindly stumble one step at a time.

I’m not aware of another illness as severe or prevalent as autism, where families are not automatically ushered into some system of support. The parents of children with autism are routinely sent home alone to deal with the reality of a devastating diagnosis and simultaneously required to immediately learn about the many therapies and services that they must seek out to develop a complicated intervention plan to treat their child.

Families, like mine are left on their own, to figure the disease out for themselves. I’ve tried a lot of different therapies, diets and interventions. Many thousands of dollars later I have found that some worked, some didn’t work. Fortunately I don't think anything I tried has hurt Nicky, but nothing was quick. Special diets did not cure his autism, supplements did not cure his autism, creams rubbed on his feet didn't change his behaviors, but some did improve his overall health, which in the end slightly improved some of his behaviors. My bench mark for trying has always been to ask myself and the professionals I trust “Can it hurt him?” If everyone agreed it could not hurt him, even if they didn’t believe it would help him, I tried it. I tried it because as a parent - besides the autism itself - the cruelest part is, living everyday with the fear that I may have missed something. The fear that I have not done enough never leaves me. Every time I read a story about a treatment that helped a child, I wonder should I do that? Every time I make a decision to do something or not do something I wonder if I am right, have I done the best thing, will I miss his chance at “recovery”?

I understand why parents try new treatments; I understand why parents are vulnerable to professionals who offer hope, even if it turns out the hope was a harmful practice. Until we have a cause, and a cure, parents will do everything they can to help their children.

Here are the links again to: Autism: Kids put at Risk, LA Times and Autism Therapies can get undeserved credit.

Autism: Kids put at risk --

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Autism therapies can get undeserved credit --

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  1. Hi Donna,

    Thanks for sending this!

    The truly sad thing is that there is too little decent research about what therapies do or don't work.

    A concern I had with the LA Times article was that it didn't really talk about how different children with autism are -- heterogeneous phenotypes is what the scientists call it. A therapy that might be the best option for one child might pose an unnecessary risk for another.

    Scientists are not doing a good job of provided us with the information we need to figure out when the risk outweighs the benefit -- or to identify equally beneficial treatments with fewer risks.

    Also, for an important new article about mitochondrial dysfunction and autism, see:

    Best wishes for the holidays,


    Margaret Dunkle
    Director, Early Identification & Intervention Collaborative for Los Angeles County and
    Senior Fellow, Center for Health Policy Research, The George Washington University

  2. I want you to know how important your blog is to so many in the community. You have such intelligent insights into the everyday dilemma’s of raising a child with autism that are helping literally thousands of parents and their families to make better decisions about what to do with their children. Thank you dear woman for what you are doing for so many.