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Communicating on their own terms is still communicating

Posted May 28 2012 8:26pm

Often, in scrolling through the many autism parenting blogs, I come across the sad wish, “If I could only, just once, hear my child say those words to me: ‘Mommy, I love you.’” I remember that wish. Even now I still have moments not of wanting to hear Nat say he loves me but to know what he is thinking. But for the most part, I no longer feel that raw loss, the grief of having a child who does not give that kind of typical verbal feedback. That is because I learned to read Nat’s own signs of love, connection, interest, and so on.

You know that when you are alone with your non-verbal, very autistic child, that something is there. He may be rocking, eyes closed, stimming, talking apparent gibberish, but you feel something. There is a bond, a connection. Is it one-sided? Deep in your heart, you know that there is something between you and him. But when you go out into public, maybe it’s lost because you are back to seeing him from everyone else’s perspective, as having deficits, rather than difference.

Most parents who are sad about their children being non-verbal and apparently uncommunicative, uninterested in anyone, are trapped in their own worlds. I am not being facetious; I see this (compassionately) as the truth. It is so difficult for us to get out of our own heads, our cultural signals, our learned responses, that we may miss what our autistic children can and are saying. Because they are saying it in their own way.

Autism theory is stacked against us from the start. We enter into the world of autism diagnosis from a negative standpoint, where we are told that something is wrong with our child, that he can’t do this and he can’t do that. He is described in terms of deficits and disability, rather than seen as different.

Maybe some of you will dismiss what I’m saying here as flaky and Disney-like: Listen with your heart kind of stuff. Fair enough. It sounds like that to you, and it did to me. Until I gave myself permission to believe what I sensed about Nat, until I had confidence in my ability to read his signals, his ways — I, too, saw him as cut off from me.

We all do it. We think that autistics have no ability to read emotions in others, that maybe they don’t even care about those emotions. Temple Grandin herself taught herself to understand what others’ emotions looked like on their faces, and how to respond. True. She did not know this stuff implicitly.

But it was there. It just looked and felt like something else to her, until she learned to see and feel it all our neurotypical way. The problem comes when we assume that autistics don’t actually feel emotions simply because they don’t know how to name a feeling, or how to respond to us. They may not know the language of emotion; that doesn’t mean they don’t know emotion, however.

I can’t believe I ever subscribed to the Theory of Mind ideology , as it applies to people on the autism spectrum. Nothing personal against Dr. Simon Baron-Cohen, who long ago enjoyed Making Peace With Autism and blurbed it, but Theory of Mind in terms of autism is some bad shit. Because it fosters hopelessness. Even if it has clinical truth to it — proof that a person with autism cannot have empathy, cannot put themselves in someone else’s place — TOM is one of those theories that asks the wrong question. The question itself — Can an autistic person know another person’s mind, feel another’s perspective — that propels the TOM research, is tainted by the old-fashioned view of autistics.  The old, poisonous way of thinking holds that autistics are a monolithic group with all the same limitations and problems, rather than individuals with combinations of challenges articulated differently in each person.

And yet, people on the spectrum are just that:  people on the spectrum. Snowflakes and fingerprints, dude. Infinitely different strengths and weaknesses, just like everyone else. Which means that in order to get to know what it is that they know, think, feel, you have to get out of your own mind and try to inhabit theirs. Ironic, isn’t it? Theory of Mind experts measure empathy and theory of mind from their own particular points of view, and judge autistics for not being able to visualize another kind of mind.

If TOM is inherently flawed because it judges other (autistic) minds from its own non-autistic perspective, then it stands to reason that judging mental ability based on ability to speak is also flawed. It is your own shortcomings that prevent you from valuing and understanding other, non-verbal forms of communication. It is the shortcomings of the theorists, not the subjects.

Once we as parents give ourselves permission to believe what we sense, to believe what we feel our child is saying non-verbally, we are well on our way to connection.  Once I realized/assumed that it was true that Nat cared about us, about people, and that he understood some/most/all of what was being said around him, my behavior changed towards him. My outlook became confident and hopeful. And either it was that Nat responded to me being this way, or it was that I now could read him better, but the outcome was the same: he does want to communicate, but on his own terms.

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