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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.

Joining in Effort

  • Posted on January 9, 2012 at 8:00 AM

I don’t know why, but my browser really hates The Thinking Person’s Guide to Autism.  While I don’t share my browser’s animosity, it does impede my access to the site.  So, instead of trying to comment there, I will respond here to the post Shannon Des Roches Rosa wrote called How Autism Parents Can Listen to Self-Advocates.

First, I agree with the premise.  It’s important for all those invested in the issues of autism (not limited to parents) to listen to self-advocates, even when what self-advocates say is uncomfortable or goes contrary to what we believe—especially then.

It’s important to listen.  It’s important to consider what others are saying and to look for the material content in their words.  But, it’s more than that.

Communication is an imperfect art.  When we speak or write, we think we are sharing ideas, but we’re not.  We are sharing words, looks, tones, behaviors, ect., which convey meaning; that meaning is then translated within the brains of our audience and interpreted.  Only by communicating and re-communicating (involving multiple attempts at listening and speaking/acting) can we determine how effectively we’ve exchanged our ideas.

This, by the way, is true for everyone—even people who are very much alike.  The more two people communicate successfully and create a mutually understood short-hand, the quicker this process becomes.  When you’re communicating with collectives, versus individuals, we still tend to use whatever communication short-cuts we’ve become accustom to, but this short-hand will almost always be interpreted differently by the different members of your audience.  Thus, reliance on communication short-cuts is not effective, with a few specific exceptions.

Furthermore, when you’re communicating with someone new, you have to test each other’s understanding to communicate successfully—no short-hand exists between you.  The greater the differences between the two of you, then there is an even greater possibility for mutually exclusive interpretations in your attempts to communicate.  A common example within our own community is when a parent defines autism as “like my child” within their own mind, and is all too ready to exclude anyone who is not autistic the way their child is autistic.  This difference in definition creates a communication barrier, since most people do not mean “like that person’s child” when they say autism.  On the other hand, too many self-advocates seem to think ally means “people who agree with me” or some equally inappropriate definition.  However, when I think of ally, I think of the way the U.S. and Britain are allies; they don’t always agree and they don’t always work together, but they do have common interests and work together to further those interests—but don’t always do so very well.

Shannon wrote:

“If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates’ spaces, rather than always expecting them to come into ours.”

This is where, essentially, I must disagree.

Both approaches miss the mutual nature of communication.  I agree that it is wrong for parents (or anyone else) to expect autistic self-advocates to come into their “space” in order to communicate.  It’s a habitual expectation (part of the “privilege” thing mentioned in the post), but it’s ineffective—regardless of who the communicators are.  Thus, it is equally wrong, if also habitual, to try to go into the “other’s” space.  Firstly, this transfer of mental space is not really possible—it’s in our imaginations.  I suspect that if we really checked every time we guessed how someone else feels or what they’re thinking about or how they’ll react, internally, to a specific stimulation, then we could blow this whole “theory of mind” b.s. out of the bloody water for good.  Second, our words and expressions are merely tools to facilitate communication.  We have to check our mutual understanding—ensure we’re both using these tools the same way—in order to communicate successfully.

Effective communication is going to happen in a mutual “space,” an in-between that requires us to join our efforts in order to communicate.  In the online dialogue, this is most likely to happen in the comments.  A blog post is for a wider audience; comments are, often, for specific, individual communicators.

There are certain online spaces, specific blogs and forums, which have created, over time, a unique space where dialogue happens on a shared basis.  But, in my experience in the greater autism community, most of these spaces are dysfunctional—preferring a side to a dialogue.

In short, we should listen.  We should ask for clarification and for explanations, even if we’re sure we know what the other person means because we know what we would mean if we said what they said.  We should invest ourselves in creating a mutual “space” where communication can occur, and we should base this shared space on mutual understanding and mutually agreed-upon definitions or meanings.

This, obviously, requires effort from both parties.  If one party—and it doesn’t matter which it is—is talking, expecting to be heard, without making the effort to be understood and to understand in return, then the communication attempt has failed.

The communication attempt has failed.

This does not, however, mean that parents (or other interested parties) should not make accommodations for those with communication disabilities.  The very act of creating a communication “space” is an act of mutual accommodation, and if one participant has communication disabilities than that must be a factor in determining how the accommodations must be made.  But, again, it goes both ways.  Both communicators must recognize that the participants are unique to each other and their intentions and their needs are equally unique.  To communicate successfully, such unique understandings and interpretations must be taken into account.  You can’t come in with all your baggage, knowing what you expect, and projecting your expectations onto the other person.

For communication success, both parties must make a joint effort to understand and to be understood.

This is not common practice.  This is decidedly rare.  We’re all so busy spouting off our opinions, our beliefs and our ideas that we don’t take time to communicate them to others.  But growth comes from communication.  Change comes from communication.  Progress comes from communication.  Unless we take the time to create mutual spaces necessary for successful communication, we will not create the growth, the change, and the progress we need to make this world a better place for ourselves and those who follow.

A Vision for the Future

  • Posted on December 5, 2011 at 8:00 AM

Lines are drawn in the sand. A community of interested, active participants is divided and shattered into ineffectual bits and pieces. People who care, who are knowledgeable, who mean well, who are willing to work for change…people who should work together butt their heads against each other, wasting their energy on each other, arguing with CAPS, shouting across picket lines, reveling in the damage done to the other side. As these divisions are formed, it seems we are drawn to dichotomies. However much we know there are many sides, many points of view, and much room for both agreement and disagreement; we inevitably boil it all down to “us” or “them.” And those who wield the power go on their merry ways, sacrificing the welfare of the many for the profit of the few, with no concerted effort to thwart them.

The environment is discouragingly familiar. I find it sad and disappointing that I could be describing the autism community. You see, I left that environment years ago when I left the political blogosphere. I was tired of watching the citizens that make up this democracy turn on each other while those who held power exercised it with impunity. While there are legitimate debates between conservatives and liberals, and all the mid-points in-between, I couldn’t stand watching either side defend their dirty politicians as if their talking-points were motivated by anything other than political self-interest. (Full disclosure: I was party to such behavior early in my foray into politics; it was listening to other “sides” that helped me to see what was going on and it was my affinity for “the big picture” that made it clear that positive change wouldn’t come out of such dialogues.)

I didn’t expect that scene to be replayed in the autism community. I didn’t expect to see the different sides within that community turn on each other with such force that it risked grinding the forward motion of the community to a halt. Yet, I see it happening.

Sure, there’ve been disagreements from the beginning. There have been sides. Some could be dismissed as fringy quacks. Others were in natural opposition. But lately it seems there is less and less reasonable discourse and discussion among those who used to be capable of it. Instead, we get vicious diatribes. There doesn’t seem to be much room any more to speak and be heard by anyone who doesn’t already agree with you. While self-advocates and parent-advocates are duking it out, those with power go along their merry way.

I close my eyes and think about Gifford and the horrible days that followed her shooting. I think about how each side, pretty much ignoring what happened, turned on each other. I think about the recent snafu involving a Republican something-or-other distributing an image of President Obama as a zombie with a bullet through the head. I think about the verbal attacks that followed. I’m not a Gifford fan. Nor am I an Obama fan. I’m just a citizen who wants the middle ground to have a voice, too; a citizen who would rather work to fix what’s wrong with this country than argue who is to blame for its unavoidable ruin.

I close my eyes and try to imagine the autism community reaching the same caustic point. I wish I could say it was unimaginable, but the way we’re going…it’s not. I can close my eyes (and without the benefit of mental pictures) see just how far astray this community could go.

I left the political blogosphere because I couldn’t stand what I was seeing. I’ve “spoken” with several people in the autism blogosphere who are considering doing the same. With all due respect to what they were trying to do, the people who are calling that recent “dialogue” snafu a success have closed their minds to the terrible consequences of their poor judgment. Diatribes and personal attacks are not steps towards productive discourse. For many, that was a last straw. They’ve opted out of such “discussions.” Now, if their voices are heard online at all, it will only be by those who are deemed “safe.” If that’s a victory, then we all might as well pack our metaphorical bags and go home, because if fractures like that continue to be hailed as victories, the autism community will shatter.

I, for one, don’t want to see that happen.

Time is against me. I have an idea. But it has to be done right. I need resources I don’t have. I need collaborators and contributors. I need time. My conservative estimate is that I will need eighteen months to get everything into place in order to launch my idea to the public. A lot could happen in eighteen months. Voices may be lost. Irreconcilable differences may be formed. The autism community could easily shatter in eighteen months.

But I can’t walk away this time. I have to try. And I need to hurry.