Should you disclose autism specifics?

I found this article recently:

“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 for letting them know, because it makes them aware.”

Starers are gonna stare. Judgers are 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. 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 discomforting 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.”

This author is the parent of a child with high functioning autism. And, this article made me think.

How do I feel about disclosure?

My son is also high functioning and over the years I have been open when it comes to discussing autism. I am comfortable discussing his autism when he’s within earshot.

These days, he acknowledges that he has autism, even if he doesn’t quite understand the difference between autism and neurotypical. (We have discussed it a few times but heʼs taking him time processing it.)

Like the authorʼs son, my son has also been mistaken as typical. I have heard the phrase, “He doesn’t look autistic,” many times.

What do I do if I hear something like that?

I usually pause to think. Do I explain autism to this person? Do I explain why my son is autistic and not “normal? Do I have to disclose my sonʼs autism to a person who may not even know what it is and/or a person I donʼt even know or will ever know? How much energy do I have to disclose my sonʼs autism?

It all depends.

If the interaction is brief—a stranger at a store, for example—then I typically will say, “My son has autism,” and leave it at that. If theyʼre curious, they can Google “autism“ at home to learn more.

If the interaction is someone at my sonʼs school, for example, then I may go a bit farther.

Another scenario has come up often. When my son is with his respite person. I have said, “My son is with his babysitter,“ instead of saying, “My son is with his respite person.”

Again, it depends on whom Iʼm talking to—if I feel like explaining the difference between a babysitter and a respite person for autistic behaviors.

I may like this person, have some kind of future with this person, need to explain the difference for whatever reason. If thatʼs the case, and thereʼs time, I will explain the difference.

I will segue into some disclosure.

However, I have also left discussions with the “babysitter” not being explained.

It all depends on the situation.

I agree with the author, disclosure is a personal case-by-case choice. You have to do what you think is right and whatʼs right for you and your family.

In my next blog, I will discuss this a bit further in regards to a conversation I recently had with a mother of a younger child on the spectrum.

 

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