Goals and Expectations; Personal Lessons and Revelations Working with an Autistic Child

In the hopes of reaching the moon men fail to see the flowers that blossom at their feet.
Albert Schweitzer

In relationships, both personal and professional it’s important to be conscious of our goals and expectations. It’s also a good idea to honestly assess the present and the past. How else can we establish reference points, of where we were and where are now? Too often we focus on the future; what we want, have yet to attain, on our unrealized dreams. We forget to take stock and credit the positive change and growth that has occurred.
This post is the continuation of my last blog, “Letting Go to Think Outside the Box; Insights and a Breakthrough with an Autistic Child”. Jay was a nine year old boy with autism. I began working with Jay in the Child Life program I was directing at Bronx Lebanon Hospital. He was brought into the hospital for evaluation and kept there on a child protective hold. The hospital became Jays’ foster home and after months of unsuccessfully trying to reach him, I discovered a way into his self contained world; by singing African chants. As a member of the Social Work department I met daily with his case worker and our team of specialists to review and develop an extensive treatment plan for Jay. We found a school program and enrolled him for half-day sessions. When summer came we even arranged for him to go to summer camp. His teachers and counselors noted “significant gains” in their progress reports. But I was discouraged when Jay came into the playroom during the afternoons because he still maintained his self stimulating repertoire of behaviors; rattling, twirling, shaking, and chewing on everything. I couldn’t figure out how to bridge the gap between our worlds; so I could begin to teach him…
At some point I probed deeper, cross examining myself. “Teach him what? “What do you expect Jay to do? Are you waiting for him to say something? Have you overlooked the bigger picture? What is he doing today that he wasn’t doing six months ago”? ...
The most obvious change was that he was in the playroom with other children! And without prompting he was sitting near or next to them. When I first brought Jay to the playroom he ran around in circles, oblivious. Sometimes he’d retreat under the tables, or huddle in the corner. Now he seemed interested in what the children were doing, sitting intently watching them play. When I reorganized the room and set up a gross motor obstacle course he moved independently negotiating different levels and planes. Previously I needed to supervise him closely, so he wouldn’t step off in mid air.
I sang songs with the children and offered him musical instruments and though the instruments didn’t seem to ring his bell, he started making new sounds. Perhaps like an infant these were preliminary before Jay could form and utter words. I continued to mimic his noises and sometimes the children copied me, which seemed to startle Jay, but at least he seemed to take note. These were all huge differences. But I didn’t know how much Jay understood because I hadn’t found a language we both understood.
One day Jay climbed up on the table and began to twirl around. It wasn’t climbing time. There were other activities going on in the room. As I approached him to get him off the table, he reached over placing his arms on my shoulders. It was almost as if he wanted to hug me. That was a change too. He was touching me. But instead of a hug he lay limp, slung over my back. Dead weight Jay was heavy, and I began to feel like a human jungle gym. “No, you mustn’t hang on me” I said trying to help him down from the table. He got really upset stamping his feet, biting his hand, and hitting his head. I was surprised at his fierce reaction, that he was so emotive. He placed his hands on my shoulders again and started to lean forward. I placed one hand on his chest and my other hand on his back and began singing “Ay Bo Bo” which is another African chant. While I sang I patted a rhythmic phrase on his body. When I stopped he reached over my shoulder and repeated the sequence, patting on my back what I just finished patting on his! He seemed pleased with himself and climbed down from the table. I was beside myself! Now we were talking…
Twice this had happened; Jay responded to the African chants hearing the sounds, and feeling the beat; auditory tonal and kinesthetic learning processes. He was telling me he understood, by talking to me with his hands. And when I thought back he understood my one word commands especially when I was teaching him to climb like, “up” “down” “sit” “bend” and “jump” because I moved his body while I spoke these simple one syllable instructions.
In 2010 we now know that children with autism or autism spectrum disorder have auditory processing problems. They may be able to hear speech sounds but not perceive the meaning of the sounds; the words and what they mean.
I left New York City in 1985. I recommended that Jay’s teachers try teaching him sign language, or create a system of tonal signals in combination with physical patterning.
How would you proceed?
I’d love to read your comments and answer your questions. Feel free to do this on my blog, or email me directly at: Stephanie@of2minds.com
“Fine-tuning your intuition safeguards your future and opens doors to the extraordinary” SRA