Act Early Against Autism Blog

Autism and recovery: Is it real?

Many people tell me "I'm lucky" my son recovered from autism. So few do.

I understand why others think that. I sometimes think that, given that such a small but growing number of children emerge from the enigma of being socially isolated, never able to find joy and compassion in life.

But you have no idea how autism reordered the dynamics of my life and my family's.  The experience left me broke, and my marriage failed.

When I learned of Leo's diagnosis, I jumped feet first into helping him as if trapped on the balcony of a burning building. I gave up my writing career, my income, my friends, my daily routine, just about everything to redirect my son's course of development. Understanding how to help him, learning what to do and then advocating for his rights was grueling, demanding and rigorous.

I'm deeply saddened that my family — my mother, father and brother — never called to say, "Jayne, how are you doing? What can I do to help?" Family supports are critical during times of crisis. My family never understood the graveity of the disorder like I did.

While I got my son back, it came at great sacrifice. I have no regrets, but I wouldn't want to do it again.  I crusade on behalf of early intervention, because it saves lives. In many ways, helping parents recover from the blow of the diagnosis and start immediate early intervention for their child is a rescue mission. I hope that you will join me in forwarding the link to my story, which appears in the Tuesday, Nov. 18, 2008, edition of The Washington Post, to other families clinging to hope that their child will one day say, "I love you."

the day when we find a cure

The mantra in the autism community is "the earlier the better" — meaning earlier diagnosis and treatment allows children with autism spectrum disorders to participate in life as fully as possible. I crusade on behalf of that message.

But how early is early? An article in today's Washington Post reveals new prenatal DNA tests can screen for a wider range of genetic abnormalities [registration required]. Autism was not one of the detectable disorders, but developing a genetic test for autism spectrum disorders is on the radar screen of resesarchers. To develop a test, the genes involved with autism must be identified. Researchers know some but not all of them.

In the Post's article, critics raised the debate about pro-life versus pro-choice. As sure as the sun will rise every day on 67 children who will be newly diagnosed with the disorder, this debate will rear up again when the genetic causes of autism are found.

I cannot tell parents to abort their child — or keep it. But I will tell them to understand the immense demands, cost and time associated with raising a child on the autism spectrum and how the disorder will re-order the dynamics of their family, perhaps to the point of destroying it. I will also tell them that early intervention does not guarantee success, but it does offer hope at a time when hope seems lost.

While we will always disagree on the rights of an unborn child, I hope that we can come together behind the message that earlier information about a disorder will allow parents to seek out the knowledge and wisdom of those who have come before them to either let go or improve the quality of life for their child (and themselves) because that's what it's really all about.