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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.

Review: A Cup of Comfort for Parents of Children with Autism

  • Posted on July 18, 2012 at 4:19 PM

I received an unexpected package a while back.  One day I went into class and a box was waiting for me, care of my graduate school advisor.  Inside were two books and a card.  Apparently, my advisor had talked with a former student and I came up in the conversation.  The former student, who is also the mother of a child with autism, sent me two collections in which her writing on her experiences raising a child with autism had appeared.

A Cup of Comfort for Parents of Children with Autism, edited by Colleen Sell, and published in 2007, was one of the two books.  Mostly, the writer was trying to make a connection—and she succeeded.  I’m reviewing the book because it’s just part of what I do.

First, though, I must caution my readers.  I don’t review a whole lot of memoirs and have yet to review an essay collection on this site, mostly because I avoid them.  Early on in this beautiful mess, I received (and purchased) many memoirs.  Most of the stories were dark, degrading, desperate attempts to find a cure for their child’s autism—some even claiming to have succeeded.  I got jaded on memoirs like that pretty fast.

So, when making any kind of recommendation, especially when a book promises “Stories of Hope and Everyday Success,” part of what I’m looking for is a break from this effort to capitalize on the darkest possible view of autism.  I strongly prefer books that challenge the preconceived notion that autism is some horrible thing that is done to unwitting families—a malignant force.  In my experience, prejudice and stigma is the much stronger, much more pervasive malignant force.

I started with the writer’s story, of course, and responded to her.  (You can find Leaving Literalville on page 176, and it’s a very good essay, highly recommended.)  I have since gone back and read the whole thing.

I was pleasantly surprised by how well the promise of this book was fulfilled.  Most of the stories were written by parents who had come to see the value and worth of their children, and had either always cherished them just as they were or had come to do so.  Of course, there were a painful few who boldly claimed they still needed to cure their children—and that seems to rather discredit their claims of acceptance and value, but, then again, it’s impossible to know whether these parents have thought about what that cure might cost their child.

What should a reader get from such a book?  Tears, smiles, laughter, joy, a sense of renewed hope and a feeling that accomplishments are possible.  Yup—it’s all there.  Most of the stories were fresh and compelling.  A few dragged.  A few seemed like the writers’ were trying to force what they really wanted to write about within the confines of the anthology’s objective.  But, mostly, I would say the book was a success.  A few stories surprised me.  Others made me wonder.  Overall, I found most of them familiar and uplifting—or at least not depressing.

One of the things I really and truly love about this piece, however, is the wide selection of points of view represented.  It seems most of us gravitate towards those we agree with, and there are some pretty compelling reasons for that, but in order to grow we need to be challenged.  We need to look at things through different eyes, at least for a while.  That, of course, doesn’t mean we don’t have to like what we see.  We don’t have to get comfortable in that point of view.  But the people we disagree with deserve to be heard, too, and maybe if we all did more listening (or, in this case, reading) we’d be able to work together much, much better.  Imagine what we could accomplish then!

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.

Special Education: What Do You Want to Know?

  • Posted on December 7, 2011 at 8:00 AM

Now that I am concentrating on my nonfiction, instead of copywriting or resume writing, it is time to pursue certain opportunities that are available to professional writers. One such opportunity is a syndicated column. While there are many topics I could create a column about, one that is dear to my heart is special education.

With this possibility in mind, I would like to ask: What would you want to know? What mystifies you about special education? What frustrates you? What problems do you want solutions for? What insight, ideas, and interests do you have?

Are you a parent with a child who receives special education services? Are you a special education professional trying to do your best for your students?

Please leave a comment below or contact me directly with your answers.