Play Date with a Friend; or, What We Need

Autism Awareness Month is starting to feel rather like Autism Information Month: April 18th saw the IOM Workshop on Autism and the Environment and new legislation in Pennsylvania that would require private insurance companies to cover autism treatments; on April 17th, Rep. Chris Smith of New Jersey introduced legislation for $350 million for treatment and support for autism in Washington. Autism was on Oprah. Autism was on the CBS Early Edition. There are more and more books and films. There is a musical.

(Maybe it’s more like Autism Information Overload Month…….)

Going through news articles from every state in the US, from many countries around the world, I ask: What exactly is this “autism” that is being described? That treatment is sought for? That causes are searched for? Is it simply “devastation”? A fate worse than death? (No, it is not, as if that needed to be said.) A tragedy? “Kaka” (the ancient Greek word for “bad things”)?

I have read accounts in which autism was described as all of the above. Indeed, at the IOM workshop on April 18th, Dr. Martha Herbert, Assistant Professor of Neurology at Harvard Medical School, included a slide on her presentation on Defining Autism: Biomarkers and other research tools
entitled “The Every Day of Some Autisms.” The photo on this PowerPoint slide was of a child, diaper visible from beneath his shorts, with something brown on his hand, chest, legs, feet, a swath of the floor, and coming out of the top of the back diaper area. The child’s head is not included. The slide also said, in smaller font, “What we need: Clinical labs that will detect and report pertinent gut pathogens.”

I am glad that the slide said “some autisms” as—-as I tried to illustrate by my writing everyday on my blog Autismland—-that, yes, autism is “every day” and, yes, as that PowerPoint slide seeks to suggest, it can at times get messy, in figurative as well as literal ways.

Just today, I regaled my students in my Intermediate Latin class—before we got down to Cicero—with an account of the pond-like mud puddle that Charlie, stomped and splashed in on Monday, soaking his boots so thoroughly that they are still drying out. “That must have been fun,” a student laughed and it was, and I could not resist adding one more story, about how, a few weeks ago, Charlie had slipped in the muddy grass in the yard and appeared behind me in my room. “Mom,” said Charlie and I turned to find jacket, pants, good pair of shoes, etc., coated in mud, and a trail of brown footprints across the rug. Charlie and I had a good laugh as he hurried (with my admittedly urgent coaxing) into the bathroom; it took a few days for me to scrub it all out.

How about this for autism awareness/information: All in good fun.

Charlie had more than enough fun today on his first-ever play date. (Charlie is less than one month away from turning 10 years old; it’s never too late to start.) There is a group for parents of special needs children in our town; the group has started a “peer mentor” program, in which non-autistic kids get some training and are paired with a special needs kid. Charlie met his mentor—”friend”—this afternoon. The boy and his mother knocked on the door and Charlie raced out the garage so that, when I opened the door, Charlie was standing behind his visitors.

We had a full house then—Grandma, Grandpa, their live-in nurse, Charlie’s ABA therapist, Charlie’s ABA coordinator, Charlie’s new friend (his mother had to go and pick up another child at school). Charlie ran back out the door and then into his room, and back and forth, excited, ecstatic. The two boys played ball, played a board game with the therapist and coordinator taking turns, too; did puzzles on the computer. The words to describe Charlie through all this are smiling very broadly. The other boy kept his sentences short (and naturally delivered) and followed the therapist’s and coordinator’s lead; he quietly directed Charlie to move the computer mouse to do an online jigsaw puzzle. Afterward all of our visitors had left, Charlie and I went for a walk and he was anxious and tense and, too, sad, and looked up at the sky and the street signs from time to time. I talked about feeling sad that things are over: “It’s okay.” “It’s okay,” echoed Charlie. I could see the muscle of his face loosening as he slid on a certain bench at the train station, and then we walked home.

Perhaps what we need—aside from more opportunities to set up carefully structure play dates with non-autistic kids (Charlie needs all that structure), and after-school programs, and daycare, and the right kind of school classrooms, and plenty of services like speech therapy and OT—what we need is an ethics of seeing, of seeing autism, and then we need to put that ethics into practice. It is not about changing our child to fit some preconceived “dream” we once had for them, but in loving them as they are, for what they are, and trying to understand from there what we can do for them, and especially by changing ourselves. We need, that is, to know who the person is in front of ourselves (for me, my son Charlie), and this involves not seeing a cause (for instance, “mercury”) or a cure (”chelation”), but seeing the whole person who is Charlie, who is one’s autistic child. There is darkness, but there is also a lot of light and the source is not the professional who has the answers to treat and cure autism but persons with autism; Charlie; your child.

Maybe if we did this, we would not need a special month to go out of our way to show our “autism awareness” because we would be practicing it, we would be living it, all the time: Autism, every day.