As April is Autism Awareness/Acceptance Month. You may have been hearing quite a lot about the neurodevelopmental disorder. For all the publicity and public awareness campaigns, for all the autism walks and research studies, much about autism remains yet unknown, such as what causes it? Why, despite all that we now know, are so many children who end up with an autism spectrum disorder diagnosis not identified earlier?
When my son Charlie was diagnosed in July of 1999, the world was all unknowns and not only because we didn’t know why Charlie was autistic, what the best way to teach him was, or why he screamed bloody murder when we tried to get him to stop looking at a spot of red paint on a neighborhood play structure.
What experts, psychologists and too many books and websites told us to expect was all “nots” and “nevers”: Charlie would “never” be able to do X, Y and Z (go to college, get married, cross the street by himself). He would “always” need A and B (everything to be the same, one-on-one support in classrooms) and forever be a toddler trapped in a maturing body.
Thirteen years later, with Charlie (who is moderately to severely autistic) a few weeks shy of turning 15 years old and nearing 6 feet tall (still a bit shorter than my husband, Jim), I think I can say that we’ve moved far beyond those “expert” predictions. It is the case that Charlie is not going to college and that romantic relationships are not likely for him, due to the extent of his intellectual disabilities. But he is no two-year-old in a tall and lanky frame, but a teenager in all regards. He doesn’t lead a typical teenager’s life; he attends a county autism center where his curriculum is focused on learning skills of daily living and vocational training. He will not be able to live on his own. He still has “behavior storms” because he can’t otherwise communicate what he feels and thinks.
Charlie has come a very long way from the woebegone toddler he once was, clinging to a stuffed Barney and not responding to any of the attempts of a room of specialists to interact with him. Here are five things “those in the know” told us he would never do that Charlie, with all the odds against him, has achieved.
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Photo of the author and Charlie around the time he was diagnosed with autism
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