Susan's Blog

Monday, May 28, 2012

Communicating on their own terms is still communicating

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.


Or, as Martha Herbert asks, “do you believe what you see, or see what you believe?”

— added by Todd HelmusToddhelmus on Monday, May 28, 2012 at 9:10 pm

TOM exists in some. My eldest cannot infer. His Gr 7 teacher has been working on it these last few months. My bro and he are exactly the same selfish, self-absorbed, personalities. So, yes… it does exist. BUT, that child went from mild, non-verbal PDD to maybe getting one of 3 math awards in June… his early in the beginning of the year math scores weren’t as high as they have been lately. So, at passing for normal…. it exists.

But, you have to go through the wall at the severe end and show them the world exists. Not trained, taught. Taught to learn and grow and try for themselves. Mine writes (mostly logos and songs and…) solely b/c last year his teacher took months to show him that there was a time for structured writing and a time to write whatever you wanted. My 10yr old loves other children… hasn’t a clue how to play with them but the smiles, the bouncing, the flapping show you he does. Ironically, the severe one is more emotionally “normal” that the other.

— added by farmwifetwo on Tuesday, May 29, 2012 at 7:57 am

Theory of Mind (TOM) often refers to the Sally Ann experiment. Could somebody please help with a link to this?

As far as I can see, the famous autism TOM Sally Ann “scientific” experiment where a child is asked to view a scene of another child moving a doll and then asked a question about where the other kid put the doll, is just plain wrong because it assumes that a child with autism sees what happens to the doll and child in the experiment the same was as a neurotypical. Yet s/he can’t understand the mind of the other child. But actually the gaze of a person with autism is very likely to be so different from neurotypical gaze, the ASD child is simply processing visually the information in the Sally Ann scene differently. So one should draw no conclusion about ASD understanding of another’s mind–but maybe conclude something about different gaze patterns if that were measured.

— added by Sarah on Wednesday, May 30, 2012 at 9:55 am

Perhaps it depends on the severity of the autism,but farmwifetwo is absolutely right.Theory of mind is a very real part of autism for some.I know it is with me.Being able to see another person’s point of view,or that theirs may be different than yours,is something you need to learn,it does not come naturally.Not any more than riding a bicycle,or tying your shoes does.What’s more,it’s something you always have to remind yourself of.It also has nothing to do with a lack of emotional empathy,or compassion for another person.That comes from an entirely different place.

There are far worse things to assume about someone with autism,especially if they have a diagnosis more severe than Asperger’s.That they are simple minded,or retarded,that they can’t take care of themselves or live on their own,that as children,they can control their destructive,or self abusive behaviors,and if they can’t they are being “defiant”,or “misbehaving”.All of which I have had to confront.I do wonder if all this applies to parents of a certain generation,and hopefully parents of autistic children are more enlightened now.

— added by Roger Kulp on Wednesday, May 30, 2012 at 4:26 pm