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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.

Independence: Part 2

  • Posted on July 17, 2011 at 4:07 AM

So, what does independence really mean? What is its significance in American culture?

Independence is “freedom from the control, influence, support, aid, or the like, of others.” In American history, independence was primarily a political matter. As a fledgling nation, we wanted independence from the control and taxation of the British Empire. I support this kind of independence. In our Constitution, we have also ensured another kind of independence: Independence from the government, which is manifest in the freedom to speak openly, to organize, to arm oneself, and—all together—the freedom of self-determination. All these are good things.

But I can’t help but think our obsession with independence is a bit misguided. Sure, independent thought and free-will, with minimal governmental obstruction, are foundations of this nation—which I wholly support. But our obsession with independence has gone far beyond that, while at the same time neglecting the basic tenets of our founding beliefs. We focus less on self-determination and more focus on self-sufficiency. The less self-sufficient you are, the less valued you are, and the less respected your legal rights become.

I could write a political post about how government encroaches on independent thought and free-will, and how as a democratic republic we should actively resist. But that’s not the focus of this blog and my past side-steps into politics on this venue haven’t gone so well. Besides, I’m more concerned about the ways we distract ourselves with assumptions of human value based on a person’s independent living status. As if whether or not you can hold down a job, button up your coat, or drive a car are the true indicators of your human worth—rather than a belief that we’ve all been endowed with unalienable rights and we are all created equal.

I’ve been told that this focus on independent living is rooted in our colonial history. If people weren’t independent, they didn’t survive. But is that really true? Granted, I’m a bit removed from colonial days, but as I understand it neighbors actually helped each other back then. That doesn’t sound very independent to me. You need a barn built? Sure, you could take weeks or months and do it yourself. Maybe you could, depending on your access to assistive technologies, such as winches and levers. Or you could pass the word along to your neighbors and get a bunch of people together and get the barn built in a day. Which do you think they did? I’m sure some people made rudimentary barns and houses without help, but when help was available they used it. Why? Because life is better when you can and do get the help you need, whether it’s from technology, other people, or both

I believe in independence. I believe people should be empowered to do the things they can do, and that often means providing them with technologies and education to get them to a point of actionable power. Then, once they reach the point of success, it means stepping back and letting them do it. But, before you get to that point of success, you do need help. You need to learn, you need tools, and you need people to help you. That’s true whether you have a disability or not.

Ah, but the difference is some people, when given the tools and assistance they need, can become more independent then others! Really? How much of that is genuine potential, or lack thereof, and how much of that is appropriateness of tools and education? We assume some people are more able—or have more potential for “ableness”—than others. Yet, as a culture, we resist providing those who are deemed less able with appropriate technological and educational adaptations. How can we really know what people are capable of if we only provide a certain set of standardized tools and we only provide those to the people we think can use them? Does that reflect a belief in independence or a belief in standardization?