Friday, October 18, 2013

Why It Hurts Your Child to Be an Autism Cure Chaser

Susan Walton

This week in a local parent forum, a member spoke up about MMS, a “treatment” that TPGA has examined (with horror) in the past. (See TPGA science editor Emily Willingham’s Dangerous Interventions: MMS and Autism.) A TPGA Editor was present during the MMS forum discussion and suggested we are reprint the conversation, with permission from that forum's Moderator.

Maybe there should be a 12 step program for autism parents who have fallen for misguided and misdirected "hope."


I am the father of a 5.5 year old ASD kid. He was diagnosed with autism three years ago. For the last three years, we tried many "treatments" including Andy Cutler protocol [chelation], multi-vitamins, Methyl-B12 shots, GFCFSF diets and various therapies. At one point in time, we were giving around 35 supplements and medicines per day. We saw some improvements for each of the above therapies. But they were MINOR.

My wife wanted to try MMS 8 months ago. But being a pessimist about autism therapies, I did not allow her to do MMS. I told her that it was too "dangerous." But four months ago, we decided to give it a try. The results are truly remarkable. My son is behaving like a normal kid. There are many improvements. We stopped all those supplements. Just MMS. He is doing great.

Being an Engineer, I tried to understand how MMS works on ASD kids. But after seeing the results, I don’t think of that any more. I have confidence now that we can completely recover my son soon. Before MMS, I had little hope.

-Now Hopeful Dad

Dear Now Hopeful Dad,

As an observer of the Cure Community over the last decade or so, I have seen a fair amount of things come and go. Some so-called treatments disappear, others just fall lower down in the noise level. But the most damaging of all the interventions I see touted is the one that starts, "Never Give Up Hope" and continues with "Try Everything."

If what you hope for is a cure, then my advice is to give that shit up. It is one of the most addicting and dangerous drugs I've ever seen. It leaves other dependencies in the dust. Parents who get their first high off it chase that feeling for years to come. They crash back to earth time and time again, but it doesn't matter. The euphoria it produced the first few times and the lure it dangles is so powerful that it trumps everything else.

Of course there are dealers out there who are glad to help. Like every other drug, it is trailed by both business and other junkies at every step. Fellow chasers encourage new parents to go farther, try harder, dig deeper. They trade stories of their best jags and convince new parents to try ever more bizarre things. The sad part is they think they are helping.

I don't know what has happened with your five year old son in the last few months. I do know that developmental bursts happen all the time. Natural growth and forward momentum and love and therapy all play a role. I also know that the time correlation between when you started using bleach on your child and the start of a period of improvement is so powerful that anything I say will be lost. The rush that comes from thinking your child may not have to have it so hard after all, that autism (and all that comes with it) is in your rear view mirror is an unmatchable high. What can I say to compete with that?

I will say it anyway, though. Our children need us to love them the way they are. We can find paths to the best possible lives for them. We do endless and indeed painful trial and error to find the right tools to help them access the world in a way that works. This may not feel as rapturous as the promise of a cure, but long term it is the real deal.

When a child is pronounced cured or “completely recovered” I have to wonder, why are their parents still in this group? Over the years I have heard from a variety of parents who tell me they have found "It." But they are still here because "It" wasn't "It" after all.

For me, "It" is education. How can I tailor my son's education to teach him what he needs to know, in a way he can access the knowledge? How can I teach others to be helpful to him in that effort? How can I help my community and the world to accept him, autism and all? And how can I educate myself to be his ally and his champion, but to step back when the path to excess beckons?

I'm not a Cure Chaser. You'll find plenty of those on the Internet, but I'm a Coper. And a mom in love. My son is brave, fun, surprising, and amazing as is. I bet yours is too.

-Susan Walton