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January 31, 2015 / 11 Shevat, 5775
 
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Life Lessons From Raising An Autistic Child (Part II) – The Diagnosis


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As soon as I saw him playing, I knew. He took a doll and pushed it down a slide over and over, in classic repetitive play. By the end of the evaluation, I gave the parents my diagnosis of PDD which, I explained, was a communication disorder. I asked the parents if they understood what this meant, and they nodded. They did not appear shocked or hysterical, the way some parents might upon getting such a diagnosis. Instead, they seemed calm and determined, and asked me for the next step.

As I always do, I recommended a school with a focus on DIR/Floortime, the therapeutic approach developed by Stanley Greenspan. In my opinion, this approach, which is child-directed and builds therapy into a child’s natural environment, is the most effective way to treat children with autism. I offered my assistance in getting him into this school, and wished them luck.

The Father’s Story

When we first received Menachem’s diagnosis, we were perfectly fine with it. Energized, even – now, finally, we could set up a plan of action! If that seems an incredibly optimistic attitude for parents who’ve just been told their child is autistic, there’s a reason for that: you see, we were not told that our child was autistic. We were told he has PDD, and, being quite young parents, we had no idea that this meant autism.

This was the problem from the very beginning. Why was an experienced preschool teacher leaving it to our inexperienced selves to determine whether or not something was wrong with our son? We had no idea what to look for, and not a whole lot to compare him to. True, our older daughter had been speaking by his age, but they say boys develop slower than girls, and we certainly never thought to notice such things as how often he smiled and laughed, or how long he sustained eye contact. Though society doesn’t often recognize it, a pre-school teacher must realize what a powerful position she holds. She literally has the power to save lives. Had Menachem’s been more forceful in telling us that something seemed wrong, we would have gotten him evaluated a lot earlier.

And why did the developmental pediatrician shy away from using the term ‘autism?’ Did he think it would frighten us too much? Or did he assume that a couple in their early twenties had enough general knowledge to know that PDD was a code name for autism? Looking back, I believe he failed us as well in pushing the DIR therapy approach without informing us of the different therapeutic options available. For Menachem, at that time, would have done much better with ABA (applied behavioral analysis), a more behavioral approach.

The major result of all of this was that we lost valuable therapy time for Menachem, therapy that could have had a profound impact on the quality of his entire future life.

By the time we actually heard the term autism used, half a year had passed from his initial diagnosis, and by that time we realized something was seriously wrong with him, so the label did not shock us. There was one thing that did shake us up. When Menachem was three and a half, his speech therapist told us bluntly, “I don’t know if he’ll ever be able to speak.” That was quite a lot for us to swallow.

But I’m grateful to her for saying it. I’d rather not have false hopes, and the only way you can effectively deal with an issue is if you have as good a handle as possible on the extent of the problem.

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