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Jul

The invisible handicap that wasn’t

   Posted by: Aaron Mildenstein   in Asperger's, The Lint Brush, Untergeeky

Keep watching this space for a series of blog posts I will be writing.

The subject? “The invisible handicap that wasn’t”

If that isn’t cryptic enough, I don’t know how I could possibly improve on that.

The point, dear readers, is that at long last I feel compelled to write about something that’s been a part of my life for as long as I can recall. I have a handicap that is invisible, odorless, dissolves instantly in liquid and is one of the deadlier poisons known to man (okay, that last part is from “The Princess Bride”). The problem with this handicap is that it’s invisible.

An invisible handicap? How so? No one can tell I have it by looking at me. Most can’t tell I have it from even speaking with me, unless they take enough time to really start to notice. How is anyone supposed to even know how to deal with this if they can’t see it? In this day of politically correct behavior everyone wants to be sensitive to those with handicaps, but how can they if it’s invisible?

Have I piqued your interest yet? Wondering what it is that’s got me? I’ll tell you…

I am a High Functioning Autistic, or if you prefer, I am afflicted by Asperger’s Syndrome. (It’s kind of an either/or diagnosis).

But how can that be? Aren’t autistic people unable to interact with others? Aren’t they like “Rain Man” or something? The truth is that’s full-blown autism. High Functioning Autistics/Asperger’s Syndrome sufferers have only some of the symptoms of the fully autistic. If you really know me well, go and do some googling on the subject. Try “High Functioning Autism symptoms” or “Asperger’s symptoms“ in your favorite search engine. Read up a little bit. See if you don’t start to see similarities.

Meanwhile, to further whet your appetite for new knowledge and understanding, I suggest that you Take The AQ Test and see what your results are. From the article it is clear that:

  1. Average people (the control group) scored an average of 16.4
  2. 80% of those diagnosed with HFA/AS scored higher than 32
  3. The test is not meant to diagnose HFA/AS
  4. Those who score 32 or higher, and/or meet the actual criteria for HFA/AS can still lead a normal life, difficulty free
  5. This test was prepared by the foremost experts in autism research

So. What did you score? I score a 37. I also manifest many of the symptoms of HFA/AS. A lot, in fact.

I took it upon myself to read up on the subject. I can’t actually self-diagnose as I’m not a doctor, but I’d put better than even money on the outcome, based on what I’ve read and based on my recollections and memories of past events (and how I acted in them).

Where does this lead, then? Why is this a handicap? Why do I call it the invisible handicap, even? People don’t understand that I have a very difficult time interacting with others, particularly in large groups. It’s hard to see this because I enjoy teaching and do well teaching in front of large groups. But put me in a social group where people are conversing and just having a good time and I become withdrawn. I offend people merely because I appear to not want to spend time with them (which isn’t necessarily true). I have difficulty looking people in the eye, leave alone maintaining eye-contact. This isn’t because I’m ashamed, it just makes me very uncomfortable. It doesn’t mean I’m shy, either. It’s exceptionally hard to explain to others exactly what’s going on in my mind when these sorts of circumstances happen. All they see is that I seem evasive, that I don’t want to be there with them, that I don’t want to talk to them, or any other number of apparently anti-social behaviors. They don’t realize that I do those things because I have a handicap.

I don’t want to write too much more on this subject now because I need to finish out the premise: The invisible handicap that wasn’t.

The other reason that people don’t see that I have a handicap is that HFA/AS sufferers are frequently gifted in a specific area, or sometimes multiple areas. They can focus on their subject or area of expertise in ways that others cannot, though this is a handicap sometimes too as it can be difficult to stop working on something you’ve started – the need for closure prevents you from stopping. I have been able to survive, thrive even, with my handicap. It’s lead me to the field of computers (machines and mechanical processes are usually one of the areas in which HFA/AS people excel), cars and other mechanical things. I have good work I enjoy. It doesn’t look at all like I have a handicap.

But, I do. And it’s about time I acknowledged that I have it.

I’m not fishing for sympathy. Nothing would offend me more than to have people tread lightly around me out of pity or sympathy, or even at all. What I crave is understanding. If people understood that I act the way I do not because I’m anti-social but because social interactions are difficult, painful even, then perhaps they’d be more inclined to accept me the way that I am and not think I’m odd because I don’t interact with others the way the other 99.99% of the population do. But then, being a part of such a small subset of the population, that’s why it is a handicap.

The invisible handicap that wasn’t.

This entry was posted on Wednesday, July 1st, 2009 at 10:05 am and is filed under Asperger's, The Lint Brush, Untergeeky. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

8 comments so far

 1 

I scored 39. My little brother probably would score about a million. ;)

Of course, my family tree is full of nutters. People whose minds eventually unraveled, like a ball of yarn rolling across the room.

I sometimes wonder if mental oblivion will be my fate too. I just hope I’m not the guy who wanders around naked, or the one who is famous because he “et his mum.”

I’ve gotten a lot better, though, since I was married. Jodi won’t let me label myself. She thinks it’s all in my head.

Yep, it sure is…

July 1st, 2009 at 3:07 pm
 2 

See, we get along well because we both understand what it’s like to be like this. :)

Diana understands me better than anyone else and has seen me progress a great deal since we’ve been married. Some things are easier to deal with, some remain the same.

I have resisted labeling myself for a long time. I hope I’m not labeling myself now. I just want people to know that they’re not imagining it, I do act a bit strangely, and, yes, there’s a reason for that.

I want to be myself, without constraints, and just let people know I’m not anti-social by nature. I just have difficulty in social scenarios.

July 1st, 2009 at 3:12 pm
 3 

Yeah, even with an understanding wife, this condition still causes problems. I’m _constantly_ accused of being either grumpy or tactless. Even though I don’t feel grumpy; and I’m starting to figure out when I’ve said the wrong thing (only, now I need to do that before it gets out of my mouth).

When I was in Brazil, people always thought I was angry (I didn’t know this until someone took me aside). And they still avoid me when I’m sitting alone. And I have rules about public bathrooms. And how to transliterate license plate numbers. My conversations are _so_ strained and weak, that it requires enormous chambers full of heavy water buried miles below the earth to even detect them. And then I say stupid things, so what’s the point anyway.

Does that all sound a bit familiar? ;)

(Oh, my brother scored only 36, which surprised me.)

July 1st, 2009 at 3:38 pm
 4 

Oh, yes!

I’ve been accused of being angry and arrogant, amongst other things. I’ve had similar problems keeping up a conversation with someone without a common interest (love the analogy of heavy-water detectors!).

Even to this day, Diana will wonder if she’s said or done something to make me angry and I’ll be completely taken by surprise. I’m never angry with her, but will be so lost in my own thoughts about something else that I stop thinking about what my face must look like to others. This doesn’t rule out my being angry with something else. Sometimes I am angry, but not with Diana. I don’t think about controlling my outward expressions or appearance.

July 1st, 2009 at 3:42 pm
 5 

Ah, well, it’s nice to know I’m not the only one crippled by this debilitating malady. I’m often so distracted with my own thoughts that I don’t respond when I’m spoken to, or worse still, respond reflexively and later have absolutely NO recollection of the conversation or the commitment I supposedly made. Oooo, that one makes Jodi crazy. And it often turns me into a liar. ;) But it was unintentional.

What I want to know is when they will start letting us park in the handicap stalls.

July 1st, 2009 at 3:56 pm
 6 

ooooh. I’ve been bit by that one several times. Many several times.

July 1st, 2009 at 3:59 pm
Diana
 7 

Wow, you two do have a lot in common. I think all of the things Peter mentioned, Aaron has done too! It’s like you are twins! Hahaha!

All joking aside, I feel I need to add my two cents to this subject. Having lived with you my dear husband for over eleven years now, I have seen so much progress in you.

I have seen how difficult it is for you at times to interact with me and our children, yet you continue to work hard and not let your “handicap” prevent you from the relationships you love most.

I am so proud of you and the fact that you are willing to share this personal struggle so openly.

People have always told me that I am so “good” with you, or so “patient” with you. All of these statements have confused and baffled me. I look at my relationship with you as the greatest blessing I have ever known. You have had a ridiculous amount of patience with me and all the foibles that I bear. I try every day to be more like you in the way I care for you. Thank you for being my best friend.

July 2nd, 2009 at 1:45 pm
TMK
 8 

46

I apparently missed on questions 3, 8, 42 and 45. #3 and #8 deal with visualization; something I have never had a problem with. #42 and #45 deal with analyzing people for their intentions and putting one’s self in another’s shoes; never had any problems with this either.

I do have Asperger’s. I know this already.

What I don’t understand is how anyone could score in the 30′s on this test and have Asperger’s. It would seem to me a lot of people are misinterpreting the questions.

Although, if there are people with such a mild form of this disability, then they can color me green with envy.

I have a feeling there are so many degrees of so many of the psychological disorders there cannot be a man or woman alive who is free of all dysfunction.

February 3rd, 2010 at 10:46 pm