To disclose or not to disclose; that's the question many parents whose children have autism wrestle with every time they set foot in a public place. Is it better to be upfront about your kid's disorder to bemused strangers, or to keep your private business private?
It's an internal debate that's been raging ever since my son was diagnosed at age 3. Because he's at the higher functioning end of the autism spectrum, by outward appearances he looks like a typical 5-year-old, yet there are situations in which he acts peculiar, borderline aggressive. For the time being, my strategy (if you can call it that) has been to say nothing unless his behavior strays beyond the quirky into the offensive.
Although I balk at the idea of him wearing his label on his sleeve -- because he's so much more than just a label -- I also wonder whether keeping mum about his disorder is somehow unfair or discourteous to strangers. For a friend who relies on public transit to take her young son to therapy, wearing an 'autism awareness' sign has been nothing short of a game-changer. Because her little guy's actions can range from what she calls "annoying" (spitting, high-pitch screaming) to violent (kicking, hitting, head-banging), she grew tired of having to explain, or justify as it were, his behavior to fellow passengers.
"I'm saving myself the grief of having people tell me off," she tells me, "If they know [about his autism], they easily ignore us. People have been thanking me of letting them know, because it makes them aware."
Starers gonna stare. Judgers gonna judge. Is my child's autism really anyone's business, anyway? And if I do reveal my son's diagnosis, am I doing so for his sake? Or am I merely doing so to save face so that people won't presume, as is often the case, that he is simply being 'naughty' and that I'm a mom who needs to dish out some discipline?
Disclosure isn't a concern for another friend whose 9-year-old is non-verbal because his needs are more obvious to the untrained eye. As with other 'visible' disabilities, she rarely feels the need to answer to strangers. In the main, the public is more sympathetic and forgiving of her son's behavior, yet even she freely admits that labeling "is not the answer to everything."
"It's not like we stop teaching him to behave properly because he's slow to learn," she says. "There are some limitations for sure, like his speech. But it doesn't stop him functioning like other human beings. [All] kids are work in progress."
Indeed, labeling is so such a slippery slope that some parents avoid it altogether, putting off clinical assessments or, even when a diagnosis has been made, telling no one except for immediate family. I know of some moms who are reluctant to tell teachers, lest autism come to dominate and infiltrate every future discussion about the child.
Indeed, disclosure poses a very personal quandary. There is no right or wrong, and every parent has to carve out his or her own comfort zone. Sometimes fathers and mothers will take different approaches. While I prefer to disclose on a need-to-know basis, my husband takes a more pro-active approach, preferring to inform people before something potentially discomfiting happens.
Quite honestly, it's been a sore point between us as a couple, because though I'm proud of my son for who he is, autism and all, the mama bear in me would love nothing better than to protect him from judgment, or at least to defer that judgment for as long as possible. At times I still long for my friend's handy card or a T-shirt that spells out his difference so people can just quit staring and move on already. Yet in the next breath, I always decide against earmarking him in that way.
Maybe as awareness for autism continues to grow -- and as our kids themselves grow old enough to figure out their own ground rules for disclosure -- we'll no longer need to plead for the patience and understanding of strangers. But for the time being, like many parents, it seems I'm destined to continue shilly-shallying between the urge to tell and the burning desire to keep quiet.
What's your stance on disclosure?