Well Being

New Research, New Books, And New Hopes

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It has not even been two full months into 2007 (a year of great significance for me as, come May 15th, my son Charlie will be 10 years old) and—in the wake of new research studies—some new paths to understanding autism are emerging. On February 8th, the CDC announced new figures for the prevalence rate of autism in the US, which is now 1 in 150. While this was not news to many—a prevalence rate of 1 in 100 has been reported in such places as the UK and in Sweden—the widely publicized lower figure—and in particular New Jersey’s rate of 1 in 94—was a catalyst for many asking “why” and “what do we do” (in New Jersey, six autism bills are being presented to the State Assembly this week). It is possible that autism can be diagnosed even in very young children and that there is a “very early autism phenotype,” according to research in the January 2007 Journal of Autism and Developmental Disorders; early autism diagnosis was also the subject of 60 minutes last night (you can watch the video on the 60 minutes website). Yesterday saw the publication in Nature Genetics of a new study on the genetic causes of autism: As much as 90% of autism may have a genetic basis.

Some conclusions that can be derived from all this are:

  1. There are more autistic persons than we had commonly thought.
  2. Autism can be identified and diagnosed at a much younger age than previously.
  3. Autism is genetic in origin.

I have been writing recently about autism myths, such as that between vaccines and autism and mercury and autism, as well as the notion that there is an epidemic of autism (such as has been proclaimed, in alarmist fashion, in full-page ads in national newspapers). These latest research studies paint a much more complex and nuanced picture of the causes of autism and, indeed, of what autism is, just as recently published autism books do; they strive to see our children not as chemically-damaged victims of human-made error, but as the whole persons they are.

There was autism in my family before Charlie: I believe my grandfather, who was a University of California-Berkeley trained civil engineer and a bridge inspector for the state of California (and who emigrated from China), had Asperger’s syndrome. My grandfather was original, and complicated, and insistent on things large (building his own house from the bricks up) and small (making his children eat whole grains and green vegetables before anyone did). This was who he was, and no one—until now—had a name for what I believe he had; for what made him brilliant, and yet very, immovably, set in his ways. It is not just that Charlie has, I think, “bridges in the blood”: He has autism in the blood, and I do not think he is alone in this. I am not surprised that we detected “something not right” in a very young Charlie: at 10 months, at 6 months, at 3 months.

I just did not know what to call it.

And, rather than cautioning against early detection and diagnosis about autism as potentially striking unnecessary fear and worry into parents of a very young child, I think we can take a page or several from the newest autism books and think about all a life with autism has to offer us. It will not be an easy life; it will be full of much that is unexpected; it will be rich in simple rewards and real surprises.

Autism is here to stay and we can start right now to say that a life with autism can be a good life indeed. As one autism mother commented recently:

I have changed entirely since discovering my son’s autism. Some friends have fallen by the wayside but have to say I am so glad this happened because the people I have met because of him has put back my faith in the human race.