To Tell, Or Not To Tell?


“In theory there is no difference between theory and practice. In practice there is. ” ~Yogi Berra

Wish I had a kid so I could get this...

Now that I actually know, for the first time in my life, I have Asperger Syndrome (AS), I face a new conundrum. Whom do I tell? How much do I tell them? What sort of “layman terms” do I use? In these small ways, it’s like wondering whether to disclose any other condition. The problem with AS is that it is not visually obvious in the way that a wheelchair-bound person, or a person with a service dog might be, and it’s not well-understood in the way, say, cancer is. No cancer patient has to go into a short, rehearsed speech explaining to everyone what cancer is.

Let’s see if there’s a layman’s way to explain it. From the Mayo Clinic website:

Asperger’s syndrome is a developmental disorder that affects a child’s ability to socialize and communicate effectively with others. Children with Asperger’s syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.

Doctors group Asperger’s syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. These disorders all involve problems with social skills and communication. Asperger’s syndrome is generally thought to be at the milder end of this spectrum.

To an outsider, that child (or adult) might simply be labeled as a self-centered BRAT. The trouble is, that’s not really what AS is about.

In all honesty, I think most people “on the spectrum” want to have friendships, be included, and experience love. We just don’t know how to go about it. It is literally a foreign language to us, and no matter how well we learn to speak it, our accent still gives us away.

Let me give some examples of me trying to disclose, in a highly gentle way, my particular “condition.”

What I actually say: “I have a mild learning disorder, in the same vein as dyslexia. It doesn’t interfere with my work, but I want you to be aware of it.”

(Employer nods, like they get it.)

What I mean: I may appear to an untrained eye to be completely “normal.” You may think of me as bright, congenial, capable, and self-sufficient. That is me trying to fit in with the NT (neurotypical world.)

On the other hand…there may be a storm raging below the surface. I may be seething with anger at something you said, I may be terrified of the fluorescent lights overhead, and I may want to join your conversation about football or the weather. Sadly, I usually lack the appropriate social mechanisms to do so. It’s not that I’m not trying and it’s not that I’m “deficient” somehow. It’s just the way I am. You may not be able to tell simply because I usually am “poker-faced” and my voice with its flat affect betrays nothing of what I am thinking.

There may be times when I get so overwhelmed that I need a “micro-break” or sensory break. It could be that someone has upset me (just because I couldn’t read his or her body language or tone of voice). It might be a perfume that makes my senses go crazy. It could be any number of things. Again, this is just me.

There are literally so many people to tell or not to tell. I do know that I have full disclosure with those immediately close to me (and there aren’t many.) As for relatives I don’t see often, co-workers, medical professionals, or neighbors, they may or may not need to know. I find that it’s best to go on a case by case basis.

Am I am ambassador for the AS world to the NT world? Whether I like it or not, yes. There’s no simple way about it; no little card I can hand out that explains all of what AS is to someone who doesn’t understand it.

I may not “look” disabled to you. That doesn’t mean I’m not. And it doesn’t mean that I can’t effectively work with you for hours at a time. Just don’t be too hurt when I need my space afterward.

AS people love NT people too!

Got comments? Shoot me a line at wikusandmurdock@yahoo.com!

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~ by Howlin' Mad Heather on October 19, 2010.

One Response to “To Tell, Or Not To Tell?”

  1. This is something I thought about when I learned my diagnosis, too.

    Personally, I limited it to my classmates, my instructors, some church folks I know, peers in my social confidence group, and whoever I come across on the Asperger’s Awareness page on FB.

    I agree with my classmates that I got a lot to offer to the OT profession. However, I am facing a good bit of obstacles… especially considering quite a bit of PhD programs require me to have a license and it’s unlikely that I will get one because of some issues. Meanwhile, if I choose not to continue my education further, I then have to face the prospect of not having a full time job… even though I am doing something that I love.

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