by Dan Tedesco
Earlier this year, at a seminar on autism research, a lecturer cited a quote from Hans Asperger’s original 1944 paper on autism:
“We are convinced … that autistic people have their place in the organism of the social community. They fulfill their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers.”
While the mountain of data the lecturer had reported was near impossible to understand and write down, when she recited this quotation I felt compelled to write down every word, verbatim, into my complementary binder of printed PowerPoint presentations. I feverishly copied as much as I could — getting hand cramps reminiscent of first year in law school — and then quickly launched a Google search on my iPhone for “Asperger quote 1944” to see if I’d missed anything.
I thought it was a beautiful quote at the time, although I couldn’t put my finger on precisely why. Perhaps it was the clear insight that Hans Asperger had into autism so early in the field of autism research. Perhaps it was the hopefulness I felt about my own son, Evan, having a “place in the organism of the social community.” Perhaps it was the validation of my untold worries about Evan. Worries that my peers and colleagues can’t even begin to appreciate.
As with most conference materials, I put my binder of PowerPoint slides on the shelf when I returned home and forgot about it.
I moved on with life — busy, stressful, anxiety-ridden life as the parent of a four-year-old with autism. I moved on to worry about the financial pressure and mounting debt incurred in a seemingly endless quest to help Evan. I moved on to worry about my day job, my side business, my wife. I moved on to feel guilty about how much time I don’t spend with my beautiful two-year-old girl, Jessica. I moved on to sit in traffic three hours every day, resenting the fact that I could be at home helping Evan up the developmental ladder or giving my equally (if not more) tired and stressed-out wife a well-deserved break. I moved on to be kicked, bitten and hit, screamed at and rammed, as I wonder if toilet training is ever going to happen. I moved on to take Evan to the playground only to watch the other kids look at him like he doesn’t belong — while Evan continued repeating his favorite movie lines, seemingly oblivious to the social cues. I’d moved on until I had forgotten about the Hans Asperger quote entirely, and the inexplicable feeling of hope it gave me.
Later in the summer, on a Sunday, I took Evan to his indoor “special needs” swimming lesson at the YMCA in Bridgeport, CT. It was a hot and humid day. Evan didn’t do particularly well that day. He wasn’t very engaged with the instructor, was very distracted, and his language was poor (mostly incoherent babble). He was tired afterward and didn’t seem all that interested in the snacks I’d packed. So I said to him, “Hey Evan, want to get a donut?” After I asked him several times, almost climbing into the back seat to get in his face (despite the fact that I was driving), he mumbled “yes” while he stared out the car window. I drove to the Dunkin Donuts drive thru and he was apparently summoned to go inside instead. He repeated, with increasing volume and emphasis: “Go inside donut store! Go inside donut store!” He was insistent, and started to tantrum. “GO INSIDE DONUT STORE DADDY!!!”
Should I go? And deal with a potential tantrum inside the store? I was anxious and fearful of how he’d behave. Anxious of the fact that he was still in diapers at the age of four-and-a-half. Of the fact that he yells every word he speaks as if he’s in the middle of a rock concert. Anxious that his uniqueness would make him stand out. Anxious that I would be embarrassed.
I finally said “OK,” and pulled the car back around the front of the store to park.
We went inside. We waited in the long line — about 12 or 13 people deep, almost to the door. It was hot, and the line was moving very slowly. People just seemed to stare at each other, miserably. A police officer. A Latino man in his 20’s with earrings, tattoos and sunglasses. Some construction workers, clearly upset that they had to work on Sunday. A couple of white frat guys who were obviously hung over and looking for some coffee. A small group of high school girls who were getting the look-over from the frat guys and the construction workers. A well-dressed African American couple who presumably just came from church around the corner.
So, there we were, uncomfortable, everyone looking at each other. Awkwardly quiet, with racial tensions. Class tensions. Sexual tensions. Incorrect orders. Incorrect change. Hungry people on a steamy day with no caffeine in their systems at 12:30PM.
And I’m sitting there thinking, as I often do with Evan, that I have a time bomb on my hands. Only a couple minutes before he does something like throw himself on the floor before our “secret” — his “disability” — is revealed.
Then he did it; he revealed himself. He revealed his uniqueness — but not at all the way I’d expected. Evan randomly blurted out — at extremely high volume — “HEY EVERYBODY, WANT SOME CHOCOLATE DONUTS? WELL, LET’S EAT THEM!” The entire establishment let out a collective laugh. A tension-breaking, decompressing, unifying, collective sigh. Everyone looked at each other and smiled. They looked at me — as if to say, “He’s such a cute kid.” Evan giggled and smiled — knowing that he made everyone laugh and was the center of attention.
Evan’s autism enabled him to cut through all the social pretentions, attitudes, bigotry, frustration and all the unfortunate aspects of social life. He unified the entire group with his electrifying personality. His autism was a social blessing and a grace, not a disability. He made people smile, which is something that so many of us forget to even try as we rush around being “neurotypical.” He made me not embarrassed, but very, very proud.
Somehow, Asperger’s quote came back to me. I thought about it — Evan had played a unique role in the organism of the social community. He was himself — he didn’t adapt to “us,” but rather, he taught the rest of us to just “chill out,” in his own unique way.
Evan continues to use his unpretentious charm to slice through the unnecessarily stressful and frustrating aspects of social life. Perhaps he is not as socially oblivious as his diagnosis and his everyday behavior would lead us to believe. Perhaps he is gifted in this respect, not disabled. Sure, the social nuances of sarcasm and the like could put him at a disadvantage as he grows older, and I worry about that incessantly. But when I get depressed about our situation and his long-term prognosis, he seems to say something that shows me how his challenges could be his biggest strengths in this unnecessarily complex and tense world. We savor every such insight into life Evan can teach us through his different perspective, and we encourage the “neurotypical” world to look for these insights from the developmentally different.
Dan Tedesco is the founder and president of HandHoldAdaptive, LLC, and inventor of a new iPhone and iPod Touch app for use by caregivers of those with language and behavioral challenges. He is pictured here with his son, Evan, using the iPrompt app he created.