This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Saturday, March 6, 2010

Should We Cure Autism?

I recently read this post on the blog of another autism mom:

The autism community has become terribly divided and I am grateful for this mom's re conciliatory attitude. I agree wholeheartedly with the first few paragraphs of her post. I do think that we all want the same thing- we want our children to thrive, and we want them treated with kindness and respect. Another autism mom once told me that she wanted to tape a sign onto her son's back that read "been through hell, please be kind". Other families with autism could be such a strong force of support for each other yet there are such deep splits between us that we are often each other's worst enemies. This does nothing to help out children, and this certainly does nothing to make our society a more accepting and respectful place.

While I do think that this mom has the best of intentions, she does fall into a few common pitfalls that divide us. She claims that autism is always a lifelong condition. Many families, thousands of them, have seen their children recover and I think that one of the central needs our community has is for parents to be believed. We know our children best and what we see in them should be listened to rather than disregarded. She may not agree with the parents' assessments, but in not acknowledging them it simply negates these families existence in the community. It also negates the voices of those recovered individuals who do have a legitimate say in all of this. She also buys into the idea that many parents who use biomed are "desperate", which is a derogatory attitude towards them and again disregards the thoughts and feelings of those parents. One of the basic principles of respect is not to judge the ideas of others just because we don't understand them ourselves.

Here is my response to her:

I really appreciate your sentiment that we are not enemies. I think that one of the saddest things in the world of autism is how families have turned against each other to such a degree. I do think we all want the same thing and I think you have elucidated it beautifully. I offer my thoughts in the spirit of respectful discourse.

My experience has been different. My son is mostly recovered from his ASD now- the ASD was not "who he is" it was obscuring "who he is" like dark clouds obscuring the sun. Healing him has had nothing to do with "making him act normal" and he has received almost no "therapy". I homeschool my kids (my other son had ADHD and OCD), well actually we unschool. I do this because I want my kids to live in freedom to be themselves and live free of stigma and negative expectations about what they "should" be able to do and how they "should" behave. My sons are free to indulge their interests and learn what they want in the way they want. They are free to be as quirky and as atypical as they want to be.

Having said that, understanding that my kids neurological symptoms were the result of underlying biological injuries, and then healing them from these injuries, has resulted in my ASD son no longer being on the spectrum and my other son no longer having ADHD, OCD, and severe anxiety. There are thousands of children who did have autism, whose biological injuries have been healed, and who no longer have autism. So we know that autism is not always a life-long neurological condition, although it may often be such. Regardless of whether or not ASD is lifelong I absolutely agree that all people, including those with ASD, have the right to live in a world that respects and honors them and their abilities as they are in the present, not as we may "want" or envision them to be in the future.

There is no shame in being injured, sick, or poisoned. I myself am all three of those. The way I see it, healing someone whose injuries result in neurological manifestations should not imply a lack of respect for the person any more than giving glasses to a child with poor vision implies that you can't respect or love the child unless he can see better. We do it because improved sight is helpful for the child. I am healing my son so that his true self can shine through. I am in no way trying to "shape" or "control" how that self should look or behave. He has always been extraordinary and I hope to god he never becomes normal! "Who my son is" is bigger than ASD, and his gifts and creativity are ever stronger the closer he gets to being healed. In our experience the gifts and the struggles of ASD are not "two sides of the same coin".