What is the best way to deal with these concerns? The parent of John, a 52-year-old man with autism, replies.
by Sue Swezey
One morning years ago I was chatting with a neighbor, as parents and children plodded by on the way to school. When we spotted a mom with her newly-included ASD child, my neighbor blurted out, “We don’t like her because we don't want autism in the 3rd grade classroom!" Then she looked at me with alarm and clapped her hand over her mouth. “Oh! I hope I didn’t say anything wrong, or something....” I was startled but replied half-jokingly that I was used to it.
Since then I’ve wondered if I missed a teachable moment, when I could have conveyed the finer points of living with autism to a captive audience. But the truth is that any autism mom who sets foot outside the door is destined to experience her share of covert, and overt, hostility.
Otherwise well-meaning people can be unconsciously cruel. My son, now 52, has weathered ill wishes over the years from friends and family alike. When he was little, one neighbor offered cheerfully to back her car over him: "It’ll solve all your problems!”
Another neighbor sniffed that she wished her daughter (the one with the perfect SAT scores) could have an IEP too: “At least she’d make good use of it!” This same woman felt that a short life for John would be a blessing for all.
John's aunt shrieked at him when he didn’t respond, though she knew his hearing was perfect. In childhood, he was the perpetual fall guy, the target of everyone’s jabs. I myself, as an autism mom at a time before there were many autism moms, was labeled, "not one of the girls" (oh, the horror).
As parents, how do we handle such situations? How do we protect our children, and ourselves? First, we must accept the fact that, deep down, many people are afraid of anyone different. To the uninformed, our children may appear weird and threatening. Perhaps they may make strange noises or exhibit sudden, bizarre movements. Onlookers may wonder if they will attack or totally lose control; they need reassurance from us (and sometimes we need reassurance ourselves). Right or wrong, outsiders may feel threatened and become defensive.
Worse yet, we autism parents ourselves do not fit the norm, given our often frenetic lifestyles. Parents from other cultures are especially vulnerable because they are doubly different, both in frame of reference and in having a child who doesn't fit.
Our public advocacy should include reaching out to those directly around us. If other children make fun of ours, we can try to befriend them (even if this involves petting their pet snake). If they like us, they may accept our children too. We should share information as calmly as possible. Others may be more relaxed with us if they think we're sane (even if we suspect otherwise).
Also, our children may mellow as they mature, and our neighbors may even offer grudging admiration for our efforts. Perhaps they may acknowledge that we are capable people. Over the years, some neighbors have actually called me to ask for strategies to deal with other ASD children nearby.
The woman who initially criticized the included third grader now gives the mom credit for doing a good job. It may eventually dawn on others that we are survivors (if you're reading this, you qualify), as it does on us that if we can deal with autism, we can handle almost anything.
With luck, in time our neighbors may become accustomed to our children, even distantly fond of them. We ourselves may finally be accepted, if not as "one of the girls," at least as passing for typically functioning like the rest.
Sue Swezey lives in Menlo Park with her son John, who has autism. She was a co-founder of Autism Society San Francisco Bay Area.