Sunday, April 3, 2011

Are You SURE You Have Asperger's Syndrome?

Being the highest of the high-functioning on the autism spectrum is a double-edged sword. On one hand, it's great that in adulthood that my symptoms are sub-clinical and I can finally relax and not worry that every little thing I do is going to set people off due to a miscommunication. I make friends with ease and I am very personable. On the other hand, because of these skills that I now have, lots of people who I meet for the first time don't believe me when I say that I have Asperger's syndrome. Yes, it's true that I diagnosed myself initially before seeking confirmation from a therapist, but I'm not the type of person that sees one little trait that vaguely fits my personality and makes a diagnosis. It is true, sometimes people do that. "Oh, I'm fascinated with numbers. I must have Asperger's syndrome," someone might say, not thinking about the label that they're misapplying to themselves. But I'm not like that.

People who knew me from summer camp or from school, with whom I reunite on Facebook, often say this when I tell them I have Asperger's syndrome: "That explains a lot." And it does! People who I'm just getting to know today can't see that I have it because I've compensated for most of the problems that come with it. Just because they can't see the struggles and the pain I endured while trying to navigate the social world throughout the vast majority of my life (a lot of it was trial and error) does not mean that these things didn't happen. Asperger's syndrome is the only logical explanation for the social problems I had throughout my childhood and part of my adulthood. Some people become sub-clinical in adulthood (AS advocate Michael John Carley comes to mind-- I used to go to his support group and I never would have guessed he has AS). A child may have a dyslexia that makes reading a headache, but upon adulthood that same person may read with near total fluency. On the other hand, some dyslexic people rely on audiobooks in adulthood. 

Like dyslexia, autism is a spectrum. And I think the highest functioning people have it the hardest growing up because they appear to be "normal." That is, "normal" kids who are stubborn, uncooperative, ill-mannered, rude, etc. When a child fits the stereotypical AS traits-- talking about trains, flapping hands, taking idiomatic expressions literally-- then people may see the AS more clearly and be more accommodating. Let's raise consciousness. For those of you who are the highest of the high-functioning, I'd like to hear from you.


  1. Well, I don't know if I'm as HF as you are, but people often don't believe me either. Unlike you, however, I still worry that every little thing I do will set people off because of some miscommunication, and I don't make friends easily. I definitely agree with you, however, that being better able to compensate, or "pass", is absolutely a double edged sword.

    Good post. :-)

  2. Disclaimer: I'm a 21-year-old girl who is self-diagnosed. (And by that I mean everyone who has interacted with me for me more than a single conversation and who has a minor working knowledge of autism/aspergers agrees, and incidentally, I wasn't the one who found AS and thought it fit me in the first place - it took 5 different people to suggest it before I moved beyond "I can't POSSIBLY have AS, I function too well" viewpoint myself and actually looked at my situation, and that's when everything clicked and suddenly made sense.) Sorry for the disclaimer, I feel it is best to give a brief background about why I feel like my experience might be relevant before I start rambling.

    Ok that being said: I get this question a lot. I "pass" in the NT world quite well, and for short periods of time, my AS can be pretty much invisible. I had to grow up VERY quickly due to my upbringing (I could have lived on my own and been fed/housed/clothed by the time I was 10, just because of circumstances. I'm fully able to take care of myself.) There was no room to mess up. Ever. Not that I didn't mess up, constantly, I just developed coping mechanisms, and was so eager to please that I spent years agonizing about them and perfecting them. A couple of examples: My mother would yell at me or worse if I didn't look people in the eyes, so I started staring at their mouths instead - fooled her. I used to echo everything that was said (or echo myself)... that has stopped verbally. I still echo everything, but I learned American Sign Language, and now I finger-spell things instead of verbally echoing them. Most people just see my hands moving and pass it off as extra energy, rather than getting annoyed at me for repeating things. Sometimes the ability to "pass" is evolved as a survival mechanism, but it makes it so much worse when we mess up.


    p.s. I just discovered your blog and absolutely love it.
    p.p.s. I had a really interesting interaction recently when I came out as (suspected) AS to a group of people I work with a lot. (I will typically say something like "I am fairly confident that I have undiagnosed Asperger's syndrome", then explain a little bit about it and me) one of them said "You can't possibly have Aspergers! You graduated from college!" She then read up on AS (and how it presents in girls/women) and the next time she saw me she told me that she agreed with my original assessment, and thanked me for taking the time to talk to her about it. And she's interacted much better with me since, so things *can* have a happy ending. ok, wow, that was long. I really need to stop commenting on people's blogs.

  3. Hey there,

    I actually just discovered your blog but I have to say I totally agree. I myself have High Functioning Aspergers and I face this all the time. People are genuinely very surprised to find it out about me, and I've often had friend, family and acquaintances question the validity of the original diagnosis since I don't seem to fit the bill on first glance. There was actually a time when I didn't want to use the label myself since I felt I would be limiting myself arbitrarily, though I've since come to embrace it as a matter of Aspie Pride.

    I'd like to explain a little bit of background about myself. I was diagnosed with Aspergers sometime in second grade, and the psychologist told my parents that I would never be able to form meaningful relationships or fall in love. Thankfully, they decided not to buy into it 100%. Yes, they were cautious and aware of Aspergers, but they never told me I couldn't do things on the basis of my diagnosis alone. In short, they let me fight my own battles and grow up normally, and though this made my youth rather hellish at times, I also grew up a stronger person for it and I am in their debt for not ever not believing in me. For four years in university I worked at Blockbuster Video where I was the store's top salesman and I'm generally told I'm a really good people person, and that I'm very friendly and amicable. People often use these examples as reasons why I can't possibly have Aspergers, but I see it differently; if Aspie and NT are languages, then I've learned to speak the latter VERY well, though it is apparent to those who know me well that it is my second language. I have trouble reading faces, and get nervous that what I just said might have upset someone so I tend to apologize profusely. Also, while I can manage it for some time, extended eye contact does bother me and after a long shift (I currently work as a cashier) I desperately need to go home and not be social in order to recharge my batteries. If this doesn't sound like I'm an Aspie, I don't know what would.

    I think the problem is, as you said, that people have certain stereotyped ideas of what people with Aspergers are like and if you don't fit that mould you're deemed to not be Aspie. I wrote a whole piece on this on my own Aspie Pride blog, if you're interested.

    All in all, thank you for this blog! It's always great to meet fellow proud Aspies fighting the good neurodiversity fight out there! Keep up the great work! :)

  4. Thanks for your comment! I will check out your blog. BTW, I tell people that I speak "Neurotypical," but with an accent. :)