Professional Asperger’s / autism disclosure is almost always tricky for me

People on the Asperger’s/autism spectrum don’t have a quintessential “look”, as do, for example, people with Down Syndrome.  It might be really difficult to spot the Aspie/autistic person in a crowd (especially since we’re not as likely, on average, to be in a crowd in the first place lol). 🙂

We, the people on the spectrum, look like anyone else.  There are no defining characteristics on the surface.  Everything that makes us different is inside.

So, the only way that someone is going to know that one “has” Asperger’s/autism is if that person tells them.  That is what I mean by disclosure – the act of informing someone that I’m autistic/an Aspie.

I’m pretty much “out” to everyone in my personal life – my immediate family, my extended family, my friends, and even a few of my school classmates.

Due to the potential ramifications of disclosure in my professional life, and the fact that there is no “undo” action once disclosure has been made, I’ve trodden very carefully in my professional life.  It’s not that I’m ashamed; heaven knows I’m not ashamed to be an Aspie (in fact, I rather like it!).  My apprehension comes from the risks–the risk that upon finding out, I would be perceived as less competent, less personable, unfit to hold my position, etc – all stemming from misconceptions and attitudes held by the neurotypical world.  I’m perfectly comfortable with my status; it’s the other people who may not be.

So, disclosure of my status in my professional life is always tricky (at least for now, until attitudes change), and I have to cherry-pick very delicately who I’m going to make that disclosure to and how I’m going to open that conversation.  To put it mildly, I must choose my words very carefully and precisely.

This past week, I learned that making the disclosure is probably going to be different each time.  After all, I’m dealing with different people each time, with different impressions/prejudices/attitudes/etc and circumstances/context of the conversation each time.  So it only makes sense that the conversation would proceed differently each time.

Much like last time I revealed my status to a patient (and the following time, which I hadn’t written about), this was a third instance.

Unlike the situation I wrote about before, in which the patient themselves was not suspected to be on the spectrum, the patient from this week was.

In fact, their Aspie-ness was written all over her.  From their initial intake forms, to the fact that their partner attended every meeting and did some of the talking for them (always out of a desire to help, never as a sign of disrespect), to the lack of eye contact, I knew in my heart of hearts that they are one of us.

I proceeded with caution.  Even if I have disclosed my status to one patient before, that doesn’t mean that it gets easier with subsequent patients, nor can I automatically assume it’s “safe” to do so.  Just as every Aspie/autistic person is different, so is every patient.  Some might not react so favorably, even if others have in the past.

Their story was not uncommon; I’d heard it before.  They’d been diagnosed with OCD by another specialist and put on medication for it, but the patient and their partner both knew there was Something Else, something missing, and they never quite fully accepted that diagnosis.  They suspected something neurological, but lacked the rest of the information.

That’s OK; so does the average medical professional.  If they can’t even get it right (i.e., recognize adult Asperger’s/autism when they see it), then how is a non-medical professional patient supposed to know?  It’s not a question of “what hope do they have?”, because so many non-media professional people have come to realize their spectrum status on their own.  A large number of us began our own journeys with self-realization, in one way or another.  But how many professionals had we been to, and how many other (mis)diagnoses had we been labeled with before the truth was uncovered?  Even as a medical professional myself, I came to realize my own status in an unusual way (through browsing medical journals, since I don’t have kids to have evaluated for spectrum conditions, nor would I or my partner have watched an interview or read an article about someone on the spectrum before, or any other such situation).

And apparently, neither had they, because what their anxiety issues and meltdowns stemmed from was a mystery to all involved – the person, their partner, and their other doctors/therapists…

…up until this week. I brought up The Subject.

(Did I mention that I trod carefully?)

I don’t want to say too much, lest this person find this blog (which they very well might).  But I’ve found that a potentially “safe” way to broach the topic is by way of bringing up “sensory sensitivity” and “sensory processing” terminology first.  After all, people who don’t know they’re on the spectrum assume they’re neurotypical, and certain terminology is more palatable for them than other terminology.  Sensory issues tend to be much more agreeable terms in the neurotypical world.

I then began to list characteristics, asking them in the form of questions, to all of which the person nodded, with increasing vigor with each subsequent question.  Eventually, the person and their partner actually laughed and high-fived each other as if to say, “finally!  Somebody gets it!”  (And this person is not one who had been likely to laugh or high-five anyone, especially in front of a healthcare professional.)

I played a tennis match of yes-no in my brain.  I hadn’t yet mentioned the terms Asperger’s or autism yet; should I, or shouldn’t I?  After much internal back-and-forth I finally thought, “screw it; bring it up.”

So then came the magical question: “what do you know about Asperger’s/autism?”

And the dialogue proceeded from there, as I listened carefully to their answer and clarified the truths, gently adjusting their previously-held notions (which weren’t entirely negative).  Then I listed off more characteristics in plain, everyday language, also to which they nodded enthusiastically.

I mentioned that a lot of us get misdiagnosed with what I call the “Usual 5” (and there may be others): depression, anxiety, ADHD, bipolar, and OCD, before we realize that we’re actually Aspergian/autistic, and that the spectrum condition actually explains all of the others, negating and replacing those other labels, which had been reluctantly accepted but never fully embraced, because they didn’t seem to fit.

I stated clearly that my “theory” about what was going on with this person was not, in fact, a diagnosis, but simply the former: a theory, an idea.  Nothing more.  And I added that if they wanted to investigate this further, that I recommended the following steps:

1. Start with the self-quizzes; they’re not diagnostic, but they ask simple yes/no questions, and provide a quick, easy, no-cost starting point to see if the subject was even worth pursuing further
2. Based on the score, then they can do several things, one of which is to search for blogs written by Aspergian/autistic adults, especially ones of their same gender, to see if what they say resonates with them
3. Either instead of or immediately after reading the blogs, they can search for the positive attributes of Asperger’s/autism; knowing this person, going straight for the diagnostic criteria first might cause anxiety or depression, with all of the “impairments” and “difficulties” and “restricted” this and “insufficient” that.  If interested, go for the happy stuff first.
4. At any point, if they’d like to pursue an official evaluation, I know just the right specialists, and I’m more than happy to make the referrals.

They were very happy with that.  They bounced out of the office, much lighter than they had come in.  The person cracked the rare smile and overall seemed subtly giddy (you know–the self-conscious, childlike (NOT immature) giddiness we feel, wanting to burst with excitement or joy but trying to keep it under wraps).

I was humbled to be able to do that for somebody again.  Maybe they’re on the spectrum, maybe they’re not.  But the suspicion that they are is so strong that I felt compelled to introduce the idea.  Now, the idea has been conveyed and released, and it will go where it may.  From here, I can only hope for the best for them, and I do!

But again, I underscore that disclosure can be risky at any time.  It’s tough to predict how someone will respond and what they think of you afterward.  And those aren’t things under my control, so I feel somewhat powerless for a moment, that critical moment that seems to freeze and last forever, until, finally, they respond with an awkward what’s-the-right-thing-to-say positivity.  Their positive response, although far from guaranteed, if and when it happens, is the coolest part.

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(Image Credit: Mario Nevado Sanchez)

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