Friday, December 11, 2020

Worrying About Using the Words of Diagnosis

Several years ago, the mother of one of my students became convinced that her son, a smart, quirky five-year-old, was autistic. Having known him for three years, she asked me what I thought. I told her that I had known many children on the autism spectrum over the years, but that I wasn't qualified to make a diagnosis. When she pressed me, I told her that her pediatrician, if he thought it warranted, would refer her to someone who could give her a more definitive answer. After consulting several psychologists and other specialists it turned out he was not on the spectrum, but during that period of several weeks his mother had turned her life over to autism, reading and researching, increasingly convincing herself of her own erroneous diagnosis, growing increasingly anxious and distraught, which, naturally, infected the entire family. This is why I had refused to even speculate: amateurs are often wrong.

It had been a brief, but incredibly stressful and unsettled time for this whole family, which is why I remain cautious about speaking to parents about things like autism or sensory processing issues or ADHD or any of the many other conditions with which children might be diagnosed. Rightly or wrongly, even the mere suggestion that a child is not "normal" (another nonsense term) throws an entire family into chaos. Rightly or wrongly, we live in a world in which these conditions strike fear into the hearts of parents: they've heard the stories, the jokes, and they've seen the cruelty of a world that just won't understand. 

In this case, the mother came to me, already working herself up, and I did what I could to calm her down, to assure her that the boy I knew, whether or not he could be diagnosed, was a delightfully unique human. He had a sense of humor that went over his classmates' heads, he had a natural interest in scholastic pursuits, like reading and science, and he demonstrated an incredible capacity for joy. She pointed out that he often played alone and that when he did attempt to enter into play with other kids he tended to do so in ways that provoked them. I, in turn, pointed out the other children who tended to play alone and and would draw her attention to other children who frequently found themselves immersed in conflict. My point was that normal (that word again) development in young children was often spiky, that no child hits all the benchmarks on schedule, that they were all struggling with the challenging lessons of living in the world with the other people. My goal wasn't to dismiss her concerns, but rather to soothe her and to let her see that children's differences are cause for celebration. Autistic or not, her son was special in the best, non-condescending meaning of that word.

This whole area is fraught. I've known parents who refused to have their child diagnosed despite their doctor's recommendations. I've known others whose lives were turned upside down by a diagnosis. I've seen families struggle with misdiagnosis. I've watched some parents who seemed to be diagnosis shopping, making me wonder if we were dealing with Munchausen syndrome by proxy. I've seen treatments that were worse than the disease and none that "worked" overnight or completely. What I've never seen is a family that was not thrown into turmoil by even the suggestion of something diagnosable.

This is not to say that I've never been concerned about individual kids. In those cases, I ask other teachers or parent educators to spend some time observing the child. I try to make time for "How's it going?" conversations with the parents to learn what they are seeing. I avoid the language of diagnosis because not only am I not qualified to make those assessments, but I know the maelstrom that certain words can cause in a family. Instead, I focus on what I do know, which are the trials and tribulations, the successes and joys, of this individual young human. Only if there is consensus among my fellow professionals do I broach the subject with a parent, and then very cautiously.

I understand that this approach can be criticized as denialism that treats these types of diagnoses as somehow shameful. I mean, denial and shame are often at the core of what messes so much with families. That said, we can't ignore the fact that denial and shame are real, that a diagnosis in today's world is almost always perceived as a declaration that one's beloved child is "abnormal" and that their life will be more challenging because of it. This is the world we live in even as we hope for a better, more inclusive future. Indeed, I've known many families who have come around to finding that better world in their own lives, but only after years of heartbreak.

I'm reflecting on this because it feels to me that many early childhood educators, parents, and other non-professionals have gotten in the habit of tossing the terms of diagnosis around (as I did above with my mention of "Munchausen syndrome by proxy"), using them to label children and behavior in a way that strikes me as cavalier. Maybe I'm wrong. Maybe this is part of how we normalize these things, but at the same time, I feel, at least in part, that it's irresponsible for dilettantes like me to throw around terminology that has a specific medical definition that I'm not qualified to assess, especially since in today's world those words, used incautiously, have the power to cause extreme stress to families.

That boy who was not autistic continues to be a smart, quirky kid. The last I heard from his family, he still tends to provoke conflict, is often misunderstood, and spends a lot of time playing alone in his own world. He is different from all the other kids. All of them are. In that way he's typical. And that's always a reason to celebrate.


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