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Life Lessons From Raising An Autistic Child (Part II) – The Diagnosis


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The Preschool Teacher’s Story

Being a preschool teacher is a big responsibility, and believe me, I don’t take it lightly. For these two to three year olds, I’m the first teacher they’ll ever have. My primary concern, of course, is to provide them a safe environment for playing, but I also try to get in some teaching, in a way that’s appropriate for their age. You’d be surprised how much you can accomplish with a two and a half year old. They are constantly exploring, and they’re so curious about their world!

But most of all, I just enjoy being with them. It’s an adorable age, and a smile and hug from one of my little charges is priceless.

Which is why I was concerned about Menachem Goldberg. He didn’t seem to behave like the other children. I never got smiles or hugs from him; he didn’t seek out attention from me the way the other kids did. While most children would play together in small groups, Menachem always kept to himself. His ability to focus didn’t seem normal, either. While he could sit and play with the same toy over and over, at other times he would just wander around the room in circles. All this was aside from the fact that he was two and a half and still not talking.

Now, I’ve been working with this age group for a number of years already, and something here did not seem quite right. So I called up the parents.

Speaking to parents is always tricky. No one likes to hear negative things about a child, and I always play out the conversation in my mind before picking up the phone. How best to phrase what I want to say. How to choose the right words so that I don’t alarm them or sound like I’m digging for problems where there aren’t any. To Menachem’s mother, I said, “Your son is an adorable boy, and I enjoy having him in my class. But I’m getting a sense that there may be some issue here, some problem with his behavior. Why don’t you come in one morning to observe him yourself?”

I hung up feeling pretty pleased with my idea. Rather than me being the bad one and telling the parents a whole list of problematic things about their son, let them come see for themselves, and make their own call.

Menachem’s mother came in the next day. She was a young woman – Menachem was only her second child. She arrived when we were just starting circle time, and this was the perfect opportunity for her to observe what I was talking about. While all the other children sat around in the circle – some more fidgety than others, granted, but sitting more or less in place, Menachem wandered around the classroom, paying no attention at all to what was going on. I glanced every now and then at his mother to try to gauge her impression of this, but she seemed pretty composed. Afterwards, I went over to talk to her.

“So, did you see what I was talking about?” I asked.

She gave me a smile. “Yeah, I did, but I really don’t think it’s such a big deal. He’s a bit of an active kid, and has trouble sitting still. So instead of listening during circle time, he walked around examining the pictures on the wall. Is this really so uncommon for a two and a half year old?”

She seemed so confident in her assessment that I felt relieved I had invited her in to draw her own conclusions instead of telling her of my suspicions. I mean, a mother knows her child best, and if she didn’t feel anything was wrong, then who am I to interfere? I’m not a trained therapist or anything.

I didn’t bring up the issue again. But every now and then, I would still get this niggling feeling inside that something was not quite right…

The Developmental Pediatrician’s Story

When Menachem Goldberg came in for an evaluation, his parents did not seem more than ordinarily concerned. They told me that he was nearing three and still not speaking, and that his speech evaluator had recommended he be given a full developmental evaluation.

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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