People are aware of my son Charlie.
He’s tall but does things that (some will think) seem a bit different: Humming, a lot of monosyllabic utterances said over and over, hands pressed tight over his ears and head down. Charlie has to do little—as in nothing at all—for people to know that he’s different and, occasionally, to start and stare. He doesn’t hold his body the way a boy his age (or an adult his size) would and, too, his speech contains only a few words, used in what I’m sure some think are unusual ways. And, too, he is never with kids his age and often with the people whom his same-aged peers would most prefer to be without: Parents.
We’ve seen the whole gamut of responses from bystanders, some of which can bequite infuriating. The topic of how the rest of the world sees autistic individuals is a vast and at times touchy subject. Recently, a number of parents of children on the autism spectrum were spurred to shock, anger, deep annoyance, and a lot of head-shaking when another mother (who has seven children but none on the autism spectrum) wrote a post on her blog expressing a strong sense of disquietude at the flapping of a little girl who was having a very hard time waiting to use the computers at the library. Many of my friends and “sister mom-bloggers” wrote responses (Shannon DeRoches Rosa and Liz Ditz have compiled lists) with reflections on what autism “awareness” is, with one blogger noting that awareness can mean nothing. I wrote about how yes we [my family] are the weird ones; we all expressed our dismay at how little autism awareness there still is, and offered remedies of what to do when autistic behavior is misunderstood. The other mother deleted her post and the accompanying comments (though these can be found here); posted a brief explanation; wrote an apology, noting that she had meant the post to be humorous as she “wanted to make people laugh, even in the midst of parenting trials.”
At this point, I’d like to turn the conversation away from those amorphous others who don’t understand what autism is and why an autistic child might flap her arms in a seemingly uncontrollable way. The case of the young girl in the library is about autism rights, about how autistic individuals are perceived and misperceived, and how these (conscious and unconscious) attitudes can get in the way of real understanding and lead people to believe, why is this “different” person allowed to be here, if he or she cannot act appropriately? Rather than continuing to cavil at the ignorance of others, I’d rather write about autistic individuals themselves, in order to foster change about the general public’s understanding of autism.
Why? Because my son is autistic. Because, despite one awareness campaign after the next, there is still so little understanding and so little compassion. When one’s child grows up and older and bigger and is no longer little and “cute,” people see him no longer as that little guy who does the funny things, but as a potential safety hazard. As a liability. As someone who shouldn’t be out, not only because of what he might do, but because people would prefer not to deal with so much difference.
Since 2000, April has meant Autism Awareness Month for us. Charlie was diagnosed in July of 1999 and April of 2000 saw Jim and Charlie and me of us flying to Washington, D.C., to attend a rally organized by Unlocking Autism on the National Mall. Over the years, like many families with autistic children, we’ve tried to “do our part” by walking to “raise funds for autism research”; by writing articles for elementary school newsletters and other publications; by speaking to student groups and school groups and community groups; by blogging (and blogging, and blogging); by asking, is it enough just to be “aware” about autism? What about striving to understand and accept individuals, children and adults, on the autism spectrum, in all their difference and (neuro)diversity? Maybe we should rather have an “autism advocacy” month, though the notion of “advocating for autism” is not as clear-cut as you might think, with some equating the phrase with calling for investigations into the causes of autism (and specifically, vaccines as a cause). Or should April rather be “autism rights” month, in which attention is focused on acknowledging the neurological difference and diversity of individuals on the spectrum as a civil right, as a human right? (Issues highlighted by the hold on the appointment of Ari Ne’eman to the National Council on Disability.)
Aside from blogging (at my own blog most of all and here at Care2.com), I’ve no big plans for this month. Some autism organizations are having landmark buildings and structures lit in blue in the name of “autism awareness.” Lisa Jo Rudy of About.com notes that she’s not sure of exactly the significance of blue-lit buildings; light blue is the color of mega-organization Autism Speaks‘ puzzle piece logo and I’m presuming the Empire State Building and the Ben Franklin bridge will be a-glowing to get us to think about autism.
For my husband Jim and me, it’s not buildings lit up in any color or puzzle magnets on cars or t-shirts or any such thing that best gets the word out about autism. For us, the best way to “raise awareness”—to get people to think about autism—has been to be “out and about,” to be aut, in public with Charlie. Taking 3-year-old Charlie to an event with a couple hundred people on the National Mall in 1999 was just the start. Supermarkets, Target, malls (of the shopping sort), museums, libraries (on many a college campus too), the beach, basketball games, the New York subway and the trains and the very city streets of Manhattan: Few were the places that we did not attempt to bring Charlie too. Our visit might be brief, and it was not unusual that we attracted a bit more attention than most, but we were able to indeed be aut with Charlie and aut about autism.
While Charlie still loves to go out, our excursions—which often involved a great deal of walking on hectic city streets—have become much more limited in the past year and a half plus. We mostly venture forth in the car these days and, after some very harried experiences in stores and restaurants (where Charlie’s sensory system and his anxieties proved his undoing), have become, of necessity, very very wary about Charlie’s responses in public spaces. Certain places or sounds in excess can result in him having a “neurological storm” and when one’s child is, like our child, 5′ 7″ and very athletic (thanks to years of riding bikes for miles, swimming in the ocean, and walking, walking, walking), it’s not so easy to have said storm happen in a public place.
Being aut has been redefined as my son has gotten older. While we frequently encounter individuals of all ages who seem to have Asperger’s, rare is it to see someone Charlie’s age and older with the number of challenges that he has out in public. We’ve managed, with a lot of planning and hyper-vigilance, to take him to a few places (a college basketball game, selected stores). I’m always hopeful that Charlie might, in a couple of years, be able to go to places as we did when he was younger, but that remains to be seen.
In the meantime, especially as the weather has gotten warmer, he has taken to pacing back and forth, and simply standing on, our small front lawn. While we bought our house because it has a good-sized fenced in backyard and a deck, Charlie has always insisted on using the front yard, only. He likes to watch the world go by (or so I like to think). I suppose his being “aut” occurring mostly on our walks around our neighborhood and in our front yard might seem a true defeat, in comparison to the urban adventures of his younger days. But, to Jim and me, the simple fact that Charlie is in our front yard, is still living with us and with us (rather than in a residential placement, as a former school district recommended), is a sign of–I dare say—some success.
Tomorrow, April 2nd, is World Autism Awareness Day. I know there are some grand and good things planned in many countries and all over the US. We will be here on our little corner in New Jersey, doing what we always do. Jim and Charlie, and me, our little “tight team o’ three,” will be going at it together, walking down that long road together.
Because, we go with him.
Learn about ways to keep kids with special needs safe here.
Photo by the author.