I started writing here a year ago, unsure of the path it would take. I was exploring what it meant to communicate about autism, and my personal brand of it. Through this web site, with the associated social media it spilled onto, I contacted tens of thousands in a few months. These strangers were overwhelmingly kind. Nearly all the hundreds of comments were a delight to read and respond to. They were invariably on topic, mostly considerate, often thoughtful and generally complimentary.
I’ve learned about humans in these interactions. I’ve learned about myself by writing these pieces. Also, with all due modesty — based on their statements — I’ve enriched others with what I’ve written. For these reasons, and anticipating at least more of the same, I plan to continue. But it has been a while since I’ve added anything new. I feel an explanation is necessary, at least to those who have graced me with their willingness to wait for more.
I didn’t stop my conversation on this topic. Since my last written piece, I continued talking about being autistic, and about autism in general, but in person. Speaking — in rooms large and small — differed from these written pieces in cadence, in spontaneity, and in increased audience interaction. I’ve been grateful for the nearly universal positive reaction to my talks. Most rewarding were the questions and comments from the assembled, but just their willingness to sit, alert, for a considerable period of time was a gift. I’ve spoken with parents of autistic children, educators, graduate psychology students and other interested parties. And, most recently, two days ago (as I started writing this), I’ve spoken with autistic children themselves.
This last attempt took place in a school. In contrast to my other talks, this one did not go well, as I assess it. The fault was my garbled message. I tried to make clear that I struggled when younger, but have since been very successful in life, collecting a bag of tricks along the way: coping techniques that I attempted to share. I came off preachy and simplistic, rather than helpful. The organizer said it went well, but I wouldn’t have been able differentiate between benevolent, sweetly faked reassurance and genuine appreciation.
I tried to forge a connection between the children who sat, some in rapt attention, some oblivious, and the child I had been. I failed. I let myself down. I let the educators down. I let the students down. I was speaking to them about what I had learned as an adult, and failed to connect it to my former, younger self.
To speak about my early experiences, I should have a reasonable recollection of those times, and yet I find my childhood memories disturbingly unavailable to me. The more progress I make improving myself, the less connected I feel to my youth. How can I talk to autistic children if I don’t remember how I was as an autistic child?
Other than a fleeting face or two, I can’t recall anything before the 2nd grade. Of that year, I have only two memories. In one, I remember my teacher, Mrs. Flail, handing me a notebook with the number she had assigned to me: 17. To her, perhaps as an aid to her memory, I was number 17. I still feel connected to that number, which may be why the memory stuck, given my fondness for numbers. In my only other memory of that grade, Charlie, a classmate, led a lunchroom group in mocking at me as I stumbled over pronouncing Massachusetts: “Mass-a-shoo-shits.” Each time I attempted it, they snickered, informing me I was saying a bad word. I didn’t know what that meant, nor could I understand their glee at my failure.
Of the 3rd grade, I recollect nothing. I know it was a new school, but that is not a true memory. I do have one memory from the 4th grade of that new school. I was chosen by the 5th grade teacher, Mr. Pace, to play the part of Linus in “You’re a Good Man Charlie Brown.” None of the 5th grade students could speak the big words Linus used, but I could — though just a 4th grader. My pronunciation, and willingness to use the words I knew, had improved considerably in the two years since the lunchroom taunting. I have no idea how that change occurred. By the following year I was winning spelling bees and geography bees.
Most of the skills I’ve acquired to survive and succeed in this human world, though, including those presented to the autistic students, were acquired as an adult. In my talk, I wasn’t relating to them as children. How could I, when I find it so difficult to access my own childhood? My advice necessarily rang hollow.
I assess this failure as I do any unskilled attempt. I must determine how to proceed, knowing I don’t yet have the ability to successfully communicate with autistic children in a focused group setting. Based upon experience with similar obstacles, I have three choices.
My first option is avoidance. I can reduce or eliminate the activity from my life. I’ve taken this path before. Talking on the telephone has always been a struggle for me, so I steer clear when possible. There are many options, electronic and matrimonial, which allow me to sidestep telephone calls. Even so, my relationships with friends and family suffer.
Another choice is acceptance. I can acknowledge the need for an action while allowing it will always bring pain, discomfort or confusion. There are humans I struggle to engage — often those I have little in common with — yet it must be done. Whether coworkers or acquaintances, avoiding them would be unacceptable, so I’ve learned to confront this pain. It will never be easy to interact with these people, but I’ll always need to.
My last recourse is improvement. I can choose to improve at the activity, by careful observation, by trial and error, developing a mental model for how to perform, predicting the outcome, then testing and revising the model. My first attempt at professional public speaking was a crushing failure, complete with acute gastrointestinal distress. I was filling in for a supervisor and presenting his speech on a subject foreign to me. The audience had to help me through it, almost word by humiliating word. Since then I’ve had countless opportunities as my career advanced, with mentors encouraging me and offering advice. Today I successfully present in the halls of power in Washington D.C.. I travel the world on speaking engagements, some broadcast globally.
I have to make a decision, then, about talking with autistic children. Which alternative will I pursue? Should I avoid it as something I’m not good at, politely refusing future invitations to do so? Cutting me off from something I yearn for, such a choice would leave me with an unhealable wound.
I could soldier on, understanding there is value in it, even if the result is sub-par. It would mean imposing discomfort on autistic children, giving them an experience they must bear through. This approach is not sustainable. No group would have me repeatedly impose on the children. Soon, I would not be given the opportunity.
Should I then resolve to improve at it? With enough trial and error, I can develop a workable model for interacting with autistic children, just as I’ve done with their parents, with educators, with professionals and the public. But this would mean experimenting on children, on those I’m especially fond of. I cannot. It would be cruel, sacrificing the initial children to improve the future of others.
Thus, I’m presently stumped. I may be forced into the first choice, to avoid speaking with autistic children and suffer the loss. It may be the only compassionate, ethical option open to me. First, do no harm.
For the time being then, at least, I’m back. I’ll return to what I know is rewarding, to what I’m capable of: writing here, talking with others. And I’ll scheme on how I might, someday, be able to achieve this dream of mine, to communicate with my former self, and with those who are similar to him.