Autism in the World

By Christine LaCerva

April is Autism Awareness month. I do a great deal of work with autistic children and those on the spectrum, so I’m all for it. But I think there’s something missing in the Autism Awareness media flurry.

Here’s some of what we’re being made aware of: diagnoses of autism have nearly doubled since 2007(New York Times); autism is more prevalent in boys than girls(Huffington Post); and along with the usual understanding that autism is characterized by a lack of communication and difficulty being empathetic, there is now a widespread belief that autistic children lack a “theory of mind” (that is, a conceptual understanding that other people have a mind [Asperger Syndrome and Psychotherapy, P Jacobsen 2005]).

autismawareness
autismawareness

As a social therapist, what’s on my mind is the language being used in so much of this discussion. It’s the language of deficiency, of limitations, and of what’s missing. The limitations are categorized as intellectual, perceptual, and linguistic. The scientific communities of neuropsychology and psychology are involved in research on autism’s organic deficits. Remediation is the only possibility; nowhere in any of this discussion is the notion that people with autism can grow.

In Kiefer Sutherland’s new TV series, Touch, the central character is a young autistic boy. He does not speak and will not allow himself to be touched. But he’s a mathematical genius who mysteriously organizes good deeds, bringing people together to ease their pain and change their lives. The show is sweet and touching — and I would think heartbreaking and probably insulting for parents whose autistic children are unable to be benevolent or mathematical wizards. It seems to me that the ways in which autism is portrayed — either as profound organic deficiency or as a reification of the specialness of the autistic child — are equally problematic, and in my opinion inhumane.

Many years ago I worked with a young autistic boy. He was neither a genius nor was he unable to grow. I was not interested in remediating him — traditional approaches of remediation had failed. My work with him had nothing to do with trying to teach him something he didn’t know how to do, but was based on awareness — the awareness of two human beings working side by side and building something together. Awareness was the activity we did together. I allowed the space and time for our relationship to grow. I was uncertain of how to proceed. I  made decisions to create an environment that was unlike anything the boy and I had ever experienced. I learned a great deal from that work, and I’d like to know what you think about it.

I am happy to introduce you to Matthew, who taught me about awareness and watchfulness and development. I have changed the names of this client and other factual information to protect his privacy.

Matthew, age 6, came into social therapy with his mother. He did not speak, and rarely, if ever, made eye contact. His family had a painful and disappointing history of trying many, many therapies to no avail. His mother wanted him to be able to communicate verbally but he had never done so.

In our first few sessions, Matthew mostly liked to look out the window of our 14th-floor Manhattan office. I allowed him to stand on a chair and do that.

One day I brought in paper and crayons and we drew and colored pictures on the floor. I sat on one side and let Matthew figure out for himself where he wanted to sit or lie down. He went as far away from me as he could get while still staying in the room. He often went under the chairs of the therapy office with his crayons. I offered him no direction.

His mother was quite concerned that I was not demanding that Matthew make eye contact with me. Most therapeutic approaches to autism insist that children make eye contact, on the understanding that looking at someone eventually becomes part of social development. Most autistic children I know hate doing it. Some have told me it physically hurts them to do so.

Matthew’s mother explained to me that she had been taught to cue him by pointing to her eyes and then to his and saying “Look at me.”

I told her I understood why she wanted me to do that, but I was not going to. I did not want to use the tools that Matthew knew from his previous therapies — they hadn’t helped him. I wanted to create a kind of relationship with Matthew that he had never had before — I didn’t want to teach him anything. I wanted to be with him in a new way; to create a new, relational, “form of life” with him. As you can imagine, this was quite challenging for Matthew’s mom. I asked for her support, even though I knew it was extremely difficult for her. With great reservations, she gave it.

For the next six months, Matthew and I had our sessions lying on the floor. I would draw for half an hour and he did, too. He stayed far away from me, and I felt no need to change that. I would talk out loud about what I was drawing, what I had for breakfast, where I was going after work today. I made sure not to look at him since he found it so uncomfortable.

Matthew seemed to be developing an awareness of what I was doing. I could tell he was aware of my talking, since he would pause when I began my chat. One day I talked about the house I was drawing and the little dog that I wanted in my picture. At the end of the session I helped Matthew get up off the floor and noticed that for the first time he had incorporated what I had been talking about in his drawing. I thanked him for doing that. I told him that I thought it was really giving.

AutismAwareness
AutismAwareness

One afternoon, Matthew and I were doing our thing. He was drawing, and I was talking and drawing — and he began to talk. He said, “I am drawing a cat. The cat is going for a walk. I think I’ll go with it.” I froze with surprise. Not only had Matthew not spoken before — his family (and doctors) did not know whether he had expressive language at all.

Our sessions continued, and Matthew continued to talk. A few sessions later, he came over to my drawing and made a stick figure of a boy. I thanked him — and we made eye contact for the first time. Our eye contact continued as our sessions — transforming now — went on.

Was this magic? Well, there were no rabbits, no hats, and I didn’t wave a wand. But yes, it is a kind of magic — the magic of human beings creating a relationship that’s not governed by rules and roles; of a revolutionary reorganization of how the adult/child relationship lives and breathes. Magic, for sure.

Social therapy works to explore, to investigate, to play, to enhance the socialness of what it means to be a human being. It is unscientific, fundamentally creative and not knowing. It is full of the awareness of the complexities of a human being’s social-relational capacities. The success of this work with Matthew comes from this awareness — not of autism, but of relationality, of the human capacity for growth.

My sessions with Matthew were a search for method — not knowing how to proceed and doing so anyway allowed something new to emerge. What was it? An awareness, a non-imposed awareness of the other. And by participating in creating it, Matthew was able to develop. He is still autistic, but now he can speak. He can be with people, he can participate in social relationships, and he can be in the world.