Early Diagnosis and the Uses of Autism Research

Charlie diagnosed with autism when he was an infant?

Just under twelve years ago, when my son Charlie was a baby, I would have thought the notion of diagnosing him at such a young age preposterous. How, much less why, could anyone saddle such a young child with such a diagnosis? Wasn't he just too young?

Flash forward to now when I read about researchers finding the first "symptoms of autism" in babies, in the May 4th Time Magazine:

Show the average 18-month-old a video of toddlers at play, and you can bet that the tot will be mesmerized by scenes with strong emotion: a fight or kiss. But some babies have other interests. At the Yale Child Study Center, psychologists Warren Jones, Ami Klin and Sarah Shultz measure when toddlers stop blinking — a reliable indicator of rapt attention. The typical child will stare at the scene of a kiss, but a child with autism will be transfixed by the opening and closing of a door.

Experiments like these, presented at a recent conference at Columbia University's Teachers College, are helping researchers identify the signs of autism at ever earlier ages. For parents, says Stone, director of Vanderbilt's Treatment and Research Institute for Autism Spectrum Disorders, "the average age of first concern is 17 months, though a diagnosis isn't typically made until age 3. That's a long time to be concerned and not know what to do."

I can see my son being "transfixed by the opening and closing of a door": At 10 months, he spent much time looking long and absorbedly in sunbeams, pictures in board books, a stack of plastic cups. But "staring too long at inanimate objects" is the one trait that stands out. The Time Magazine article notes other early "warning signs" of autism in a young child, namely, "not responding to one's name; not sharing interests through pointing and eye gaze; lack of joyful expression; an absence of babbling; difficulty establishing eye contact; and staring too long at inanimate objects." Of these, the ones that most characterize my son as an infant were that he did not share "interests through pointing and eye gaze"---Charlie did not have "joint attention." He might be fascinated by a blue rectangular block, but he'd look at it and not try to share his delight in that block with anyone else.

He was (and remains) a child with a frequently "joyful expression." As a baby, he babbled a bit, but not excessively. What stands out to me is that the traits noted by the researchers which most describe Charlie are all about his attentiveness towards inanimate objects vs. human subjects. He certainly did (and still does) spend a fair amount of time looking at patterns of colored blocks or certain pictures in books. On the other hand Charlie is a social kid who likes the company of others and was described as "friendly" by his teacher on his most recent IEP. This makes me suspect that the desire to be social and be among others has long been intrinsic Charlie, but his motor and other skills were not yet developed, so that he just was not yet able to focus as well on moving, unpredictably, constantly changing beings---other people, with our constantly shifting speech and gestures.

I've said before that I would have liked to have known Charlie's diagnosis as soon as possible, to prepare myself and to prepare for him---the past twelve years since Charlie's birth have been, you could say, an extended re-education in how to take care of a child-becoming-a-teenager-becoming-an-adult who has a lot of needs that society, as things currently stand, cannot meet.

Others have argued that the earlier we find out that a child has autism, the greater and more numerous will be attempts to in effect quash autism at the start. While there is currently no prenatal genetic test for autism, the possibility seems not unlikely---but what would expecting parents do with the result of such a test?

Currently the phrase "autism advocacy" can refer both to efforts to provide more services and supports for individuals on the autism spectrum---to what we can do for individuals on the autism spectrum in the here and now ---and also to efforts to find out more about autism to better understand it and development "treatments" for it. For myself, advocacy needs to be first and foremost about people here and today, rather than about worrying ourselves about preventing yet undiagnosed, and even unborn children, from being on the autism spectrum. All for the good to know earlier about whether or not a child has autism, but this knowledge should be used to start a blueprint for planning for a life that's going to be different.

Due to my son's early diagnosis---he was diagnosed in July of 1999, just as he was turning 2---we have been able to educate him and to make changes in our lives for him that, Jim and I think, have been ultimately to his benefit; have ensured that Charlie is and (we hope) continues to be a member of society, rather than a problem who has be segregated and cast away. In the wake of the creation of another autism organization with a clearly articulated agenda of science and research, the Autism Science Foundation, let's make a renewed effort to not only about what we're researching and learning about, but how we are putting these results to use. There's real children, real people at stake here, not simply abstractions and "participants in studies"----real individuals, in need of real change, here and today.