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Early, Early Diagnosis and Prenatal Testing for Autism

by Gabrielle on November 15th, 2007

[Note: I am honored to have Kristina Chew, Ph.D. from Autism Vox as a guest poster here today.]

Last month the American Academy of Pediatricians (AAP) called for universal screening of young children for autism. Many have applauded the new guidelines, while others have cautioned that we may be in danger of over-diagnosing autism in young children. When my now 10 1/2 year old son Charlie was diagnosed with autism in the summer of
1999, the average age of diagnosis was five years old; Charlie was just over two years old at the time and therefore diagnosed quite early—-under the new AAP guidelines, it seems that it will be more likely that children will be diagnosed earlier and earlier. With a major study is underway to detect “risk factors” that might point to autism, will expecting mothers begin to think more and more about fetal programming—about how what they do and eat and drink and more may affect their growing unborn child?

With all of this information and, indeed, this public concern about autism and detecting it, I do think that, if Charlie were a baby now, he would have been diagnosed in his first year. Charlie was a baby who spent hours sitting on his alphabet quilt with two buckets of toys, or looking through his library of board and picture books: But, even though he seemed more or less content with these activities, I was always hanging about and checking in with him. Charlie was absorbed in going through all the toys or books, and yet I sensed a “something” that required my being there; a kind of nervousness, perhaps, a querulous tone to his babbling. Charlie was delayed in all of his gross motor developmental milestones—rolling over, sitting up, moving (he never crawled but scooted about with one knee leading and his hands propelling him), walking (16 months). He did not have the joint attention—the attempt to share something that caught his eye with someone else—that I see now in many other babies. From the time when I was expecting him and I could feel Charlie moving, he had bouts of what I now realize were hyperactivity: I was teaching Latin to middle schoolers in St. Louis then and, as I turned to write out the third conjugation of verbs on the board, I could feel him kicking and twitching and wriggling, over and over. Charlie was a good eater then as now; also then as now, he became extremely hyper after eating and, though a breast-feeding babe in arms, he could move and pulled his head from side to side and looked (and snatched out some more milk).

Even given his curious and delayed development in many areas, Charlie did some unusual things, while still in utero and as a baby; these eventually added up into his autism diagnosis on a July afternoon. We soon started Charlie on a number of services that any autism parent can rattle off: ABA, speech, OT, some biomedical treatments, music. How Charlie learned and did well and slid backwards and led my husband Jim and me to make some permanent changes in our careers, lives, and what some call dreams is the story I’m trying to tell in the book I am writing; I often use the metaphor of the journey, the odyssey, to describe what life with Charlie feels like and while the road winds and gets rocky and sometimes I do now know which way to go, I am learning more and more to follow where Charlie himself guides us.

I used to wonder how I might have felt had I known that Charlie was autistic from birth or even before he was born: What if prenatal test for autism is developed someday? More than a few autistic adults have deep concerns about such a test: Between 80 and 90 percent of people who learn that their baby has Down syndrome choose not to have the baby; will expecting parents do the same if they know that their child will be autistic? The very notion of a prenatal genetic test for autism brings with it the possibility of eugenic abortion. What kind of a world, populated by whom—by what diversity, or not, of people, do we wish for?

I wrote this back in July, eight years after we learned that Charlie has autism—-and what I wrote is still very much the case:

Whatever the results of any genetic test, the ball is in your court. The decisions that people—-parents knowing that their baby will very likely have autism—-make will be influenced by perceptions of a condition, of a disability; of the possibilities for treating and helping their future child; of their own understanding of a disability such as autism. And this is one reason that I seek out, and seek to foster, perceptions of autism that are true and that are full not of darkness and kaka, but of light and—to refer to an earlier post from today—the green of growing things.

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POSTED IN: autism, motherhood, pre-natal testing