Wednesday, January 15, 2014

What's wrong with wanting a 'mini-me?'

This comment on
the blog of a parent stopped me in my tracks (if you read down in the post you'll see the comment reprint in full). 

It’s from a young adult with autism.

She was responding to the parent’s post about hope. 

In it, the young woman with autism encourages parents to hope that with appropriate supports their child will become a happy, fulfilled person. But she asks us to take a really close look at what we are ‘hoping’ for.

Are we hoping for our child to become more like us? More ‘normal?’

“Do you believe that typical behaviour and communication reflect the ‘natural’ conclusion of a universal process of growth?” she writes. “Do you only consider a change to be ‘growth’ if it results in your child acting in a way that you find more relatable or comfortable?

“The reason it is important to presume competence  is not because all people are capable of displaying ‘competence,’ given enough time and encouragement. 

“We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.”

I take this to mean that just because we parents, in our conventional mindset in our tendency to frame normalcy as the end goalcannot see or understand an atypical ability or way of doing something, does not mean it is not there.

She goes on.

“Please, do not presume that all people are capable of social ‘competence’ given sufficient support; instead presume that all people’s sociability is somehow a competent one, even when you do not understand it.

“Please, do not presume that all people could learn to converse competently,  given sufficient support; instead presume that all people do converse, even when their responses or reactions fall outside of communicative norms.

The writer advocates a kind of hope that presumes the intrinsic value of a person and acknowledgment of valid difference.

This is quite different, she suggests, from hoping that your child will eventually more closely fit the 'normal' mold, which she suggests is to want our children to be something other than who they are.

I am struck by the impossible task that child has been given. Nothing they do or say will mean anything until they are judged to have communicated what they mean. I can say, from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible.

This hit home for me.

This week I've been working on a project with Ben on silent movies from the 1920s. He adores Charlie Chaplin and his outlandish antics, like when, as a starving prospector in Gold Rush, he cooks up his boot in a pot and eats the leather and even the laces.

Ben can't easily generate his thoughts in writing or sign. He can't tell me in signs why silent movies were so popular, other than to say they are funny. 

If I write out a few scenarios from the Gold Rush movie, he can point to the one he thinks is the most funny: when 'the little fellow' and big Jim sleep through a storm that pushes their cabin so it is hanging off the side of a mountain.

Now that I think about it, he was also able to sign the house and show it tipping precariously over the edge.

He can do a really good Charlie Chaplin imitation, walking like a penguin and twisting a cane.

But while we were working on the project I couldn't help wishing that he could translate the thoughts he has in his head easily into signs or written words, so that I would KNOW exactly what he is thinking.

Because I can see in his animated eyes and engagement with the movie, and how he'll do a bit of a running commentary with signs while watching, that he has lots of thoughts he can't translate fluidly.

But I see from the comment written by the young woman with autism, that wanting a conventional expression of his thoughts is a form of narrow-minded judgment. 

I can say, she writes, “from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible. Assuming your language is the only possible language and, therefore, the natural end product of human development is just another way of assuming that anything you don't understand doesn't matter (or even exist).

In wanting our children to be more like us, we are closing doors that would allow us to see them more for who they are. We are in some way invalidating who they are, because we are not open to accepting their form of communication. We have made a value judgment because we can't imagine ways of beingor their benefitsthat are foreign to us.

Any two people who speak different languages must presume the other is trying to communicate, despite their incomprehensibility, in order to start building a third language they can share,” says the young autistic woman.

Indeed! It's a partnership.


I recently read a tweet that said: 'why is it that we are so proud to be so different from our parents, but so disappointed in our children when they are not like us?'

Thank you for this post - which is about acceptance. I cannot get enough of this topic.

what wonderful thoughts on difference! If we were all the same life would be boring and not advance as rapidly. I like to think about life on a Bell curve - the outliers are often our most imaginative too for communication on a bell curve.