Saturday, January 19, 2013

Autism Cured? Hope & Frustration

From a time when we were very worried about his future: 2007

Much buzz around the internet lately relates to a recent study that a small percentage of children diagnosed with autism recover. (follow this link to the New York Times Jan. 16, 2013 Article)  This provides hope for many but frustration and disappointment to so many more.  For parents whose children were recently diagnosed, it offers a glimmer of hope.  Some children do overcome their diagnosis.  As my son says, "I have autism but it doesn't have me."  It has taken many years of hard work for him to be able to articulate that thought and for it to be accurate.  Gabriel controls his autism.  His brain still functions differently but he can and is part of our world now.

This same article can cause frustration, anger and self-doubt in parents whose children are not "recovered" or "cured".  I remember the desperation and thinking that if I make the wrong choices for Gabriel, he may never be independent.  I remember worrying what would happen to him after his father and I were gone.  The fear that he would be abused or led into horrible situations has just recently ceased to be overwhelming.  

I know other children with autism who are not as high functioning as Gabriel.  I wonder if that would be Gabriel if I hadn't pushed him so hard.  I wonder how the parents feel.  I know I would be angry that some kids are recovering and mine isn't.  I would be analyzing every choice I made and everything the schools did or didn't do wondering where we went wrong.  I would second guess every decision I ever made.  

Reality is that there are many totally unrelated conditions labeled "Autism".  This leads to confusion and frustration.  Some of them respond to Early Intervention and intensive therapy.  Some children can be "totally autistic" in preschool but function relatively normally as high school students.  If we can learn to distinguish between the different forms we can learn to find actual causes and, more importantly, effective treatments.  

Why are some children with autism aggressive and some not?  May not be the same condition causing the autism-like symptoms.  Years ago I used the analogy of two people being unable to walk.  Crutches may help both of them be mobile but what is the real cause of the problem?  If one has a broken leg, it can be set.  In time that person will not need crutches but may walk with a limp.  Another person may have lost a leg.  No amount of therapy and time will allow this second person to be free of the crutches.  

With intensive long term studies and statistical analysis, we might be able to separate the conditions and stop using the same term for all of them.