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.
“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.