Sunday, May 25, 2008

Language, Humanity, and Autism

I've been reading an excellent book--You Are What You Say
by Matthew Bud.

In it, he talks about the power that language has in human lives. He quotes Fernando Flores as saying:

"In language we build our own identities, our relationships with others, the countries that we live in, the companies we have, and the values we hold dear. Without language we are mostly chimpanzees."

He then goes on to discuss Helen Keller and her experiences discovering the concept of language and all that it enabled her to do.

The lines that really caught my eye and inspired this post were:

"[language] allows people to become aware of themselves and of others and builds trust, intimacy, and, yes, suffering. We can't even imagine life without language."

When I think about my experiences with autism, especially my experiences with kids like the seven-year-old who lie on the lower-functioning end of the autism spectrum, an inability to communicate effectively is an enormous piece of the puzzle.

These two quotes cut to the heart of my experiences with my son. And at the same time, they don't.

The seven-year-old's ability to communicate with other people is incredibly limited. He doesn't talk; he doesn't sign; he's never yet managed to get the hang of PECS (Picture Exchange Communication System). My wife recently commented that he doesn't seem interested in learning to communicate.

His difficulties communicating very sharply limit his ability to take part in the general activities of the human race. But they don't limit his humanity, his claim to be a member of the human race.

A couple of years ago we went to visit my brother and his family in Austin. My parents and one of my uncles also came to visit at the same time. The seven-year-old had trouble with the change of routine and the unusual circumstances. He showed greater-than-usual obsessive "stimming" behaviors, things like jumping in place and throwing sand/gravel/rocks. Several months later my parents came out to visit us in Seattle.

The seven-year-old has had home therapist
s who come and do ABA (Applied Behavioral Analysis) with him in our home. After watching the therapists work with him, my mother commented about the difference between him in Austin and him at home doing therapy. She said that in Austin his behavior had seemed almost like a pet rather than a person, and had made her think of Hellen Keller. But when watching him work with his home therapists she said they reminded her of Anne Sullivan--the woman who taught Helen Keller to communicate.

The work that the therapists do with the seven-year-old and others like him are all driven around helping them express themselves and their humanity. Without that help, sometimes they barely seem like members of the human race to people who don't know them well--who haven't made the significant effort required to establish a connection with them.

That is the reason why so many parents of children with autism (myself included) go to such great lengths, sometimes virtually bankrupting themselves, in order to pay for therapy for their children. We want everyone to be able to see our children the way we do--in all their humanity, as full members of the human race.

No comments: