(Update: this post was inspired by what I felt (and wrote the gist of, as a comment) in empathetic response to an excellent early autism-themed post written by Happy, Healthy Autist (AKA VisualVox, formerly known as “Aspie Under Your Radar”. Definitely worth following!)
“No way, not you. You can’t be autistic!”
We know that you mean well. We know that you don’t want to offend us. We know that your intentions are pure. We know that your heart is in the right place. (At least, those attributes had better pertain to you, if this person trusts you enough to open up to you about such a personal and vulnerable subject! Sorry if that comes across a little standoffish; I’m rather protective of my fellow spectrum peeps.)
We know that you may feel awkward, not knowing what to say or how to respond (welcome to the club, by the way; that’s how we, the people on the Asperger’s/autism spectrum typically live our entire lives). We know that you feel pressured to respond appropriately, to respond in the “right” way, to be politically correct, to tread carefully. Society has its Expectations, after all.
Except that you’re not sure what those Expectations are; it’s not exactly every day that someone confides in you that they are/might “have” Asperger’s/autism.
But if you’re saying anything like the opening quote, any variation of the above at all, you’re choosing the wrong words.
You may not realize it, but responses like these are usually insulting. We know you don’t mean to be. But they send the message that that person is incompetent to make that judgment. And who are you to say, anyway? Are you seriously insinuating that you know that person better than they know themselves?
And for many of us, who have often put up with a lifetime (give or take) of denial, second-guessing, criticism, and monumental failure to be taken seriously, comments like these are yet one more jab in the ribs. Before too long, it has become somewhat (or very much) of a sore spot.
Disclosure is often enormously risky. We go out on a long, brittle limb by telling you the truth about our Aspergian/autistic nature. We close our eyes tightly and roll the dice, hoping to god we don’t lose a friend…or a job…or anything else. We pray we’re taken seriously.
Saying things like “you can’t be autistic!” or “you’re too ‘normal’ to be autistic” (or any variation thereof) is like a verbal assault, a personal dismissal, almost bordering on personal rejection, or even a theft of sorts. It denies–or takes away from–that person a foundational, fundamental part of their identity. It also denies them a(n often much-needed) sense of belonging, which they’ve rarely–if ever–experienced, and may have come to treasure. It strips away their community, and their sense of (finally!) belonging to one. It takes away a part of their humanity, insinuating that you know better than they do, and they’re somehow cognitively inept to make such a judgment for themselves.
It separates that person from themselves, leaving them with nothing.
Words like these may have an even darker and more damaging effect: if the person to whom you’re saying them is early on in the process of considering that they may be Aspergian/autistic, then your reaction might actually dissuade them from pursuing the idea further, and may cost them years of quality of life, leaving them undiagnosed, unidentified, and unsupported.
This can cost relationships. This can cost careers. This can cost families, or children. This can cost years of life. This can cost quality of life. This can indeed cost lives themselves.
Not cool (insert finger wagging here).
Don’t be “that person”, the person that contributes to the ripple effect that concludes with devastation and desolation.
Please don’t go anywhere just yet; truth be told, I don’t like to complain without offering at least some kind of solution. Although I’m frequently guilty of succumbing to an “us vs them” mindset (which I’m not necessarily proud of, but I figure that’s probably where I’m at in my own process, and I own that fault as my own), my preferred approach is to build a bridge that fosters understanding.
I encourage everyone not on the spectrum to listen to, believe, and take seriously those who confide in you their spectrum status (whether suspected or confirmed). If we tell you we suspect that we’re on the spectrum, simply offer encouragement. Maybe, the encouragement to seek formal diagnosis, if possible. If they can’t or have chosen not to do so, don’t second-guess their conclusion; simply support it, and seek to understand more (if applicable/appropriate).
Or, merely offer support. Simply reassure us you’ll support us and stick by us no matter what. (It usually brings us a smile, even if only on the inside, to know that we’re not going to lose friendships, to be assured that you’re not going to drop off the face of the earth now that we’ve gone out on that long and brittle limb in confiding in you).
Or, ask us basic questions (slowly), in a neutral tone, such as how we feel about that or even a bright, “really? Interesting! How did you come upon that idea?” Or even an open question, such as, “do you feel comfortable telling me more?”
There’s no perfect response; in the end, it’s going to depend largely on the individual person you’re talking with. Everyone on the spectrum is different, just like everyone not on the spectrum is different. (It’s not like there’s a Pink Floyd “The Wall”-esque Play-Doh Fun Factory cranking out a single “Aspie/autistic prototype” somewhere; we’re all unique individuals, too.) 🙂
Above all, listen to what we say, and take our words to heart. Please, believe us. We really do tend to mean what we say, and we try really hard to help others understand. Whatever you do, don’t vanish. Don’t tiptoe around the giant elephant in the room. Don’t assume. Seek to know, to be enlightened, to become aware, to accept.
You never know; by your listening, your encouragement, your support, and your sticking by our side, you just might help change a spectrum person’s life for the (much) better. ❤
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(Image Credit: Gabrielle Ragusi)