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Our Hidden History

  • Posted on October 26, 2012 at 8:00 AM

In an effort to prepare for Willy’s appointment with the geneticist, I pulled the major records from all three boys’ medical files. Each packet of documents in these old files corresponds with a story point on the memoir I’m writing, but I hadn’t pulled any of them yet. For a while, I just re-read what had been said and what had been determined. I spent a little longer on Ben’s, because getting an accurate diagnosis was a bit more difficult with him. I thought about the moments and the hardships that had gone along with each of those packets of papers.

Reading them again, I was surprised at the hidden prejudice I saw so clearly. Alex, who is the most severely autistic of my children, was diagnosed with PDD-NOS, not autism. Though his verbal and nonverbal communication delays are extreme, he’s more socially-inclined than expected of an autistic individual. His ability to engage socially is impaired, but his desire to engage socially (with adults) is not. For this reason, he did not meet the criteria of autism.

As time has passed, as their skills have improved, neither Willy nor Ben showed this dramatic decreased desire to socialize that was expected of Alex in order to obtain an autism diagnosis. Their ability to socialize is impaired, and this ability is impaired in some different ways than Alex’s is, but the desire is there and it has always been there with all three boys in one way or another. Just not the “normal” ways.

One thing my husband and I learned early on is that if we wanted to engage our children in a social way, we’d have to do so where they are, which wasn’t where we’d expected them to be and it certainly wasn’t where we were. So, we adapted. With Willy, we were able to adapt the most successfully, because we could understand what motivated him. With Ben, we were able to adapt with moderate success, because we could understand enough of what motivated him to do so. With Alex, we’re still trying to figure out what motivates him. We’re still adapting. He’s still very much where he is, and we have to come to him to make the connection—but sometimes he just seems out of our reach.

The motivation is there, but with such a severe communication disability, we can’t quite make the fully satisfying connection that Alex craves.

The possibility exists that part of the reason that Alex struggles as much as he does is because he’s having seizures that we’ve failed to recognize. Until we saw this neurologist, the possibility of seizures—of Alex having seizures “now,” instead of developing them later—was never mentioned. He was never tested for “hidden” seizures, because we didn’t know that he should be. The more I read about epilepsy, the more I wonder: Is this the missing piece? Is this the key?

We won’t know until after a few more appointments—one for the initial evaluation and one for the video EEG and one for the post-evaluation, and possibly more in between—the first of which has been scheduled for early December.

Flipping back through these packets of information, I read the doctors’ words and there are passages that slap me in the face. These assessments that we endured to get where we are now were wrought with prejudice: Everything about them is underwritten with the assumption that it is wrong to be autistic. And what’s worse, the answers these assessments provided might not even be enough.

Since almost the beginning, I recognized my children as neurologically different or neurodiverse, and yet it’s only within the last few months—with the onset of epilepsy—that I’ve taken any of my boys to a neurologist. Always, it’s been psychologists. When I define autism for publication, I start by referencing the DSM-IV, a psychology manual. Throughout this time I’ve been suspicious of psychology, of the nature of the discipline, of its start with Freud, of its connection to eugenics, of its overzealous classification of “disorder.” And yet, here I am, realizing with not a small bit of guilt, that I’ve been enabling them to define autism for my children, for my family, and even for my writing. I’ve been enabling them to define, despite my resistance, the nature of my children’s being. I’ve been enabling them to set value (rather, lack thereof) on their worth.

I can justify it. The neurologists were always too difficult to get to. The referrals were always for psychologists. The system funneled me in this direction, and to get my boys’ the services and accommodations they needed I had to work within the system. I know why I did what I did.

But it all sounds hollow now. Empty. Mistaken and misguided.

What if, this whole time, Alex was having untreated seizures? What if treating those seizures empowers Alex to make the connections that have so long eluded us all?

Whether that’s true or not, I can’t help but feel that, despite my best efforts, I’ve failed my sons.

Discovering the Wrongness

  • Posted on February 13, 2010 at 5:27 PM

Yesterday morning, I sat at the dining room table after what had already been another more-hectic-than-usual morning, reading through Willy’s notebook one more time.  The words struck me as wrong, and I puzzled over them, growing increasingly frustrated with myself.

“Willy knows to…”  It said.  Why did those words strike me as wrong?

I call Willy over to me.  “Willy, did you lose your recess again?”

“Yes,” he says sadly, hesitantly, expecting a lecture I suppose.

“Why?”

“Because I didn’t do my spelling,” he says.  “I’m sorry.”

“Why didn’t you bring your spelling homework home so you could do it?”

He shrugs.

“You know you need to be organized at school.”

He nods his head, his face melted with the disappointment of disappointing me.

It still struck me as wrong.

“Do you know how to be organized at school?”

He nods and says, “C-a-l-m-d-o-w-n,” in the deep, drawn out way we say it to him.

“But how do you be organized?”

“Use my head,” he says, poking his skull.

“What steps do you take,” I ask him softly.

His body gets stiff.  His voice gets quiet.  “I don’t know,” he says timidly.  He waits for the lecture.  And he waits.

I sigh, and suddenly the wrongness makes sense.  Both calming down and using his head are important.  But neither is enough by itself when the steps to do what needs to be done are not in his head.  Willy knows to be organized.  He knows his homework needs to be in his folder.  He knows each assignment needs to be written down in his planner.  And he knows to do his work when he gets home.  But there are steps in between that make these things happen.  It is these steps that make the disorganized organized.  It is these steps that Willy doesn’t know.

He’s failed to do each of these things on numerous occasions, not because he’s not motivated, or doesn’t care, or doesn’t want to do them.  It’s because he doesn’t know how.  He’s been lectured.  He’s been punished.  But not because it’s his fault; it’s because I failed him.  It’s because the school failed him.  He’s ready for more independence, but before we hand it to him we have to teach him to handle it.

Sometimes the parent disappoints the child, even when the child doesn’t know it.  So, I sat at the dining room table and I wrote a long note in his notebook.  We’ve failed him, but that doesn’t mean we can’t make it right from here on out.  This is a problem that can be solved with a bit of effort and a lot of coaching—something we should have been doing all along.  And so I wrote to his teachers what we need to do so that Willy can succeed.

I’m sorry, Willy!

Because that needs to be said too.