A few weeks ago I posted this picture on instagram.
It’s the official “unofficial” working screener document consisting of the unique characteristics and traits of adult women with Asperger Syndrome, or Aspienwomen (ps: I hate the term Aspienwomen but that’s neither here nor there) by Tania Marshall. When I first sat down with this 10 page document with it’s lists and lists of common traits I didn’t know what to expect. I mean I know my own ticks, quirks and habits but since I’ve not had much contact with other people with Aspergers, I spent most of my life just thinking I had more ticks, quirks and unusual habits than the average Joe.
I sat down with a highlighter and began meticulously going one by one through the characteristics. By the first page I knew there was going to be a lot of high lighting happening. I didn’t just willy nilly say “yep”, “yep”, “yep” through the list. I thought about each one. Thought about my daily life. Thought about my childhood. My adult hood. Then high lighted accordingly. When I put the list down an hour later, at least 85% of the list pertained to me. When I sat down with Mimi later that day and went through the list again, she helped me see (with an outside perspective) that in fact about 95% of the list pertained to me….
Paying for an official diagnosis is hard to come by. Almost impossible since most medical professionals focus on young children when diagnosing this relatively “new” phenomenon. Unfortunately it’s not new. Today they say Aspergers. Growing up they said “unsocial”, “loner”, “likes to be alone”, “very intelligent, ahead of her class, but lacks social skills”…yadda yadda yadda.
I don’t know why this list is so important to me, but it feels like a blessing and a curse. At the same time that there is a HUGE relief that someone out there is actually saying “hey, you know all those things that made you feel weird and embarrassed and misunderstood?…there’s a name for that shit”, there is also a new wave of embarrassment because I have to face facts that I see and deal with the world around me in a very different way than many of my peers and unfortunately most of my peers don’t understand so the only way they’re going to understand is if I advocate for myself and educate people about what it’s like living with Aspergers.
Working at Costco I find I have to constantly “explain” myself. From forklift drivers, to managers to coworkers who don’t understand why I didn’t laugh at a joke or think I have an attitude. Constantly having to talk myself down from anxiety because moving fast doesn’t always work with my thought process of “remember this and this and this and this and this and then don’t forget to do this and this and this and this” all while looking at one particular item on the shelf.
When I do get up the courage to say “yadda yadda yadda….aspergers….yadda yadda yadda”, the common response is “What is Aspergers”…how do you explain something so complex in a few sentences? You can’t. I have a list now that I suppose I could show people but in the end most people just won’t get it.
But I have a list now. That means that someone out there actually gets me on a medically professional level. Those ticks, quirks and habits happen for a reason and not just because I’m “unsocial” or a “loner”. That my need to “remember this and this and this and this and this and this” before moving on to “remember this and this and this and this” has a rhyme to the reason. That my sensitivity to light, sound, textures and just about anything else you can think of actually has a reason to the rhyme. That even the smallest “off” can be the biggest “on” for anxiety, and crying and not knowing how to react in certain situations.
I’m not even sure what the point of this post is today. I don’t want to be embarrassed anymore. I want to be empowered. I don’t want to have to explain myself over and over again but I suppose that’s the only way the people around me will understand a little more clearly what it’s like living as a person with Aspergers.
(hint: it’s complicated)
Funny, I don’t think of you as a loner or antisocial at all. In fact I don’t think you leave people with an impression that anything is different than the usual 99.9% of the time. I suspect (like most of us) your feeling of how you are perceived by others is magnified by your insecurities about it. I think I understand better than most as your spouse what those bits and pieces of you that make up your personality are. I love and appreciate the things you call your ticks and quirks and have grown to understand the hows and whys of it all as you learn about yourself and share with me. I really love how much you’ve become your own best advocate. Explaining to your co-workers what’s happening with you and advocating for what you need and why it’s important is hard for you, but you’re doing it because you know how important it is. You make me proud of you, every damn day.
#LAWN Your Mimi
Seriously, what IS normal?
Great post T. There’s nothing wrong with you or me or any other person on the spectrum. If anything I think NTs are better equipped to adjust to our behavior versus the other way around. That said, having Aspergers doesn’t mean total inflexibility and don’t forget there are ways to reduce sensitivity and learning how to cope better to noise, light, social situations.
Getting overstimulated from too much noise, social interactions or lighting doesn’t need a medical diagnosis or an explanation. Just tell people you have a sensitivity to noise, light… and leave it at that. It’s none of their business why. If they truly care because they want to make it easier for you then it might make sense to explain Aspergers to them, however, I’ve found it much easier to just explain to people what you need very directly vs. a medical diagnosis (officially diagnosed or otherwise)
Sometimes it’s nice to have an official diagnosis and sometimes it’s not especially since little actually changes after being diagnosed aside from validation that you fit a particular neurological profile (usually created by an NT.) Having a diagnosis can backfire because one may start lumping behaviors under the Aspergers category that may not belong there.
As Mimi stated – ” I don’t think you leave people with an impression that anything is different than the usual 99.9% of the time. I suspect (like most of us) your feeling of how you are perceived by others is magnified by your insecurities about it.”
I agree with Mimi here mainly because my partner says the exact same thing about me.
On a related note…since you work at Costco I thought you might enjoy this story. One of the last panic attacks I had was actually at a Costco. I had been going to the same Costco for 15+ years and one day I walked in and they had rearranged the entire store. THE ENTIRE FLIPPING STORE. I walked up and down one of the aisles over and over hoping for some recognizable visual reference, no luck. I came to the conclusion that Costco was trying to ruin my life then I completely shut down. My partner had to do the shopping while I walked along holding the cart intently staring at my feet. Thankfully I have adjusted my expectations and can now successfully shop at my Costco 🙂