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It’s a Matter of Trust

  • Posted on September 10, 2014 at 10:00 AM

There are those who believe that people with autism, i.e. adults with autism who have the resources to self-advocate, should lead the discussions and decisions related to autism. Many of them have expressed it this belief as a matter of logic; others have expressed it as a matter of justice; and others have demanded it as their right. Those outside of these circles sometimes see this demand as self-advocates wanting to wrest the decision-making powers from parents and researchers and practitioners.

There is some truth to their claims on these powers, but there is also some untruth to these claims. With regards to researchers and practitioners, it’s a matter of scientific practice and scientific integrity. They want to control their own efforts, and they have a point in that regard; a scientist should not be forced to study something that does not interest him or her. Fortunately, the public doesn’t have to fund the objectionable research particular scientists may wish to engage in, but that doesn’t mean they won’t find funds elsewhere. But, for the moment, I’m not concerned with researchers or practitioners.

As a parent, I empathize with the position of parents. That position can easily be summarized: You don’t represent our children. Whether we’re talking about adults with autism or researchers and practitioners, the truth is that you do not represent our children, no matter how much you might want to do so. If our children are of age and have the necessary resources to self-advocate, then they can self-advocate and then we have to accept their rights to do so. If our children are not of age or cannot advocate for themselves, then we have the right and responsibility to advocate for them.

For some parents, it truly is a matter of power. Some parents continue to exercise excessive power over their children long after their children are able to engage in self-determination, self-advocacy, and self-fulfillment. They actively seek to deny their children the necessary resources to self-advocate in an attempt to maintain control of their children; they may also actively discourage self-advocacy. For the moment, I’m not concerned with them.

I’m concerned with the parents who advocate for their children because life has taught them that no one else will do so. I’m concerned with the parents who have been burned by school systems, medical facilities, and governing bodies. I’m concerned with the parents who know that their children’s interests are threatened and who stand up to speak out against those threats.

We will not let you advocate in the names of our children, because we don’t trust you. Our ability to trust has been damaged, assaulted, and betrayed. We’ve learned the hard way that “the system” doesn’t really protect our children’s interests unless we advocate for them. We recognize that you may be well-intentioned, but that doesn’t mean that you know what our children need. Furthermore, we recognize that you may not be well-intentioned; you may be self-serving and we know what serves you does not necessarily serve our children.

If you earn our trust, then we can cooperate with you and even collaborate with you. But we cannot step aside. We cannot leave the work for you to do. Our children need us to speak up. We cannot trust you to do so.

The Importance of Being a Trustworthy Parent

  • Posted on July 25, 2014 at 10:00 AM

Assuming our children are verbal, we expect them to answer when we talk to them. We expect them to listen, to answer our questions, and to tell us the truth. We learn, over time, that our kids will lie upon occasion. We try to teach them the importance of honesty, of authority, of coming to us when they’re in trouble. Rarely, it seems, do parents stop to wonder whether they’re worthy of what they demand of their kids.

From the beginning, I was reluctant to teach my kids to believe in Santa Claus. I still remember learning the truth of that. I didn’t learn the truth about Saint Nicholas. I learned that Santa Claus was a lie that adults told to little children. I learned that the letters, the news broadcasts, and the presents were all lies. I’d already figured out that the guy at the mall couldn’t be the real Santa Claus. But to find out there was no such thing…

As I child, I believed in fantasy. I thought, maybe someday, maybe if I’m lucky, I’d get swept away into Narnia. Or maybe I’d discover my own magic world—there are lots of them—and I’d get to go there. Maybe I’d get to go any time I wanted to. Life was rough and I clung to this fantasy longer than most kids. I read A Wrinkle in Time and the books that came after it, and I thought that maybe if I had my own magical, transformative experience I’d turn out alright, too.

When bad things happened to me when I was a child, I didn’t tell my parents. I didn’t tell them, because I didn’t trust them. Would they blame me for what happened? I got blamed for things that weren’t my fault all the time. Would they believe me? They didn’t always. Would they be honest with me about the consequences? Would I ever really know what would happen next? I didn’t know what to do, but I didn’t know what they would do either. How would they react? What would happen to me? I didn’t trust them. So, I didn’t tell them, even when I needed them.

I wasn’t completely alone. I didn’t keep everything to myself. But I didn’t tell any adults either. I told other children and we coped with each other’s problems, helping each other as best we could. I remember what that was like. I remember what had happened to me and how I dealt with it. The truth is that the events of my childhood almost destroyed me. Not only did I get myself in situations where I could have been killed and in situations where other people wanted to kill to protect me, but I nearly killed myself. I seriously considered it. And the only reason I didn’t is because I knew two people in my life would miss me too much if I did. Neither of them were my parents.

I remembered these events and I decided to tell my children the truth. I told them that Santa Claus was for pretend and that it was alright to pretend. I made it perfectly clear that it was perfectly okay with me if they wanted to believe in Santa Claus, but that they didn’t have to. I taught them the difference between what’s real (like a brother) and what’s pretend (like a story or a toy). I told them that they could play pretend, but that it was just pretend. My children—autistic though they were, disillusioned though I was—learned to play pretend just fine. They didn’t lose any of the magic of their childhood. But they knew the truth. And they knew I would tell them the truth if they asked me.

Being trustworthy isn’t easy. We’re socialized to shade the truth. We’re indoctrinated with the “goodness” of white lies. We’re taught to fudge the details, to shape arguments to our advantage, to shape opinions to be like our own. We’re taught that charisma and glamor are qualities to have and to believe in, to follow. And then we have to break down these socialized tendencies and tell the truth, even when it’s hard, even when it’s uncomfortable or unpleasant or even “unnecessary.”

It’s not that my children don’t lie to me. Each of my children who know how to talk has learned how to lie, whether they lie well or poorly. And they do lie. But, when it really matters, when it’s really important, they know they can tell the truth, no matter how hard it is, and they know they’ll get my help and that they’ll have input on what kind of help they get. In other words, my children know they can trust me—even the teenagers—because they know I’m worthy of their trust.