Aspergers. I know it’s a bizarre topic for a rant on a food blog, but hear me out – I’ve got a lot to say on the topic!
Recently, I watched a Rick Mercer rant about bullying in schools, especially with regards to gay kids, and teen suicide. It was a powerful rant. During the short video, he made a passionate plea for all gay people in the public eye to come out, and be role models for gay kids. It makes sense – in addition to role models / support for gay kids going through the bullying, it also provides a “normalization” of GLBT people to the general public.
It inspired me – I thought to myself, “Wouldn’t it be great for there to be more normalization of Aspergers? If there was an “It gets better” type campaign, especially for kids with Aspergers?”. I know I sure could have used some sort of Aspie role model when I was a kid – I didn’t know ANYONE with Aspergers, public or otherwise. I’m sure that lack of reference point contributed greatly to spending a good deal of my childhood wondering if I’d gotten dropped off on the wrong planet.
So, as someone who’s sort of in the public eye, let me help begin such a movement!
I was first diagnosed with Aspergers about 15 years ago, in my early/mid teens. It’s been an interesting journey, both before and since diagnosis. I’ve not only had to learn a lot of self-awareness and observation, I’ve also had to learn to deal with/understand neurotypicals. It’s also been interesting to see how awareness of Aspergers – and other autism spectrum ‘disorders’ has evolved over the years.
I’ve been surprised by the number of parents of Aspie kids that I’ve run into lately. I’ve been pleasantly surprised by how many of them work so hard to understand and accommodate their kids – it’s a luxury I went without when I was growing up, and still lack to this day. My family had no CLUE what to do with me, and made no effort to understand or get along with me. I was treated as a complete outsider then, and am to this day.
Beyond my family, school was absolute hell. I didn’t think the same as everyone else, I didn’t act the same as everyone else. The kids knew that there was something “different” about me LONG before I was actually diagnosed, and never let me forget it. I don’t think I was ever able to communicate to my family just how awful school was for me. Kids can be just horrible when someone is “different”.
Looking back now – and especially after talking to other Aspies and parents of Aspies – the “weird” things about me tended to be things common for Aspies. A few examples:
– I could NOT touch chalk. I still can’t, and can’t handle touching anything with that sort of texture. No matter how much ridicule I endured, I had to wrap chalk in a paper towel or SOMETHING before using it. I can’t explain it to this day… the feeling I get from chalk is a mixture of.. Hrmm… like all of the moisture being sucked out of my hands instantly, and .. Bugs crawling all over my hands. Just this awful, crawly, nasty feeling.
– I was a “flapper”. Still am, when I get nervous or agitated. Depending on how I’m situated, this is usually me repeatedly smacking the palms of my hands against my legs, a table… whatever.
– I chewed my shirts. Usually the collars, sometimes the cuffs. I would chew my winter coat so often, I frequently had windburn / chapping on my bottom lip and chin. This continued til… oh, probably age 16 or 17.
– I destroyed pens and binders. Take pens apart, use unfolded paperclips to puncture / destroy binders… yeah. I actually hadn’t thought about this for a LONG time, and was recently reminded of it by @aspieside on Twitter. You see, her son does all of this… it was really interesting to read of someone else acting the same way I did, when I was young.
All of this – and many other quirks – were a source of embarrassment and ridicule when I was a kid. Not something I really *want* to share, but you know what? I think it’s important to get it out there. If you are – or have – an Aspie kid… you’re not alone, and you’re not a freak.
Several years after my diagnosis, things changed for me. I was in a car accident, and I THOUGHT it had magically gotten rid of my Aspergers – a Dr had even said as much. I thought I’d suffered some sort of brain injury, as I could feel my processing slowing down. I’d started using contractions – I hadn’t before – and was not as monotonic as I used to talk. I started learning how to make friends and deal with people, as if a light switch had been flipped. It was like this bubble that I’d been living in had been popped.
In the course of trying to figure out what was going on, I joined Mensa and met a LOT of people like me. (Mensa is almost like a big Aspergers support group!). In meeting other Aspies, I learned how to relax around people, be myself, and interact with strangers. For the first time in my life, I wasn’t a freak or an outsider. If I’d been dropped off on the wrong planet, well hey – at least these people were as well, and I was no longer alone! Whatever it was, the experience of learning social skills by being around other Aspies spilled out into more everyday life, and now I can even chat with strangers!
I’m not sure what exactly happened. I guess I just started learning?
Anyway, that brings me to an important point I want to make.
Part of why I see a need to speak up about being Aspie is the fairly recent rash of Aspie bashing in the media, and hysteria with regards to vaccinations. Let me get up on my soapbox for a few minutes here.
First off, there is NO reason to link autism to vaccines. Hysterical paranoia, at best. That’s all I’m going to say about that.
Secondly… Aspergers is not a disease. There’s nothing wrong with me, or with any other Aspie. I get so upset when I see parents freaking out that there is something wrong with their aspie kid. Talk of finding a “cure”, etc. Well, guess what?
The way I see it, we simply run on a different operating system. Aspies are to neurotypicals, as UNIX is to Windows – on so many levels. Yes, it’s a Windows world… but there is certainly nothing wrong with those who go against the grain and run Unix.
In all actuality, your life is better because of people – behind the scenes, that you may never see, know, or meet – who run Unix. Well.. Same with Aspergers.
Oh, and really? I’d rather have Aspergers than smallpox (eradicated through the use of vaccines!), mumps, measles, tuberculosis, or even the common cold. Hell, at this point in my life, I’d rather have Aspergers than neurotypicality!
Man, I’m all over the place. So many things to say, having a hard time organizing my thoughts!
I’ve been a huge supporter of the “It Gets Better” campaign since it began. As much as I think that the message could very easily be applied to Aspies, I think we need our very own campaign. No sense diluting their message, when we have our own unique concerns. I vote for “You Can’t Cure Awesome”. I definitely see a need to not only provide public examples of happy, functional Aspies… I see a need for those aspies to reassure parents of aspie kids that everything WILL be ok, and that their kid can have a “normal”, happy life.
Aspie kids: It totally does get better. If you go to school with a bunch of degenerates now, KNOW that it won’t always be the case. You are so very lucky to have access to resources that weren’t there when I was growing up – make use of them. Meet other Aspies. I can’t tell you how great it feels to finally find your tribe.
Also – trust me on this – as much as it may be tempting to wish you fit in, you really don’t want that. As an adult, I look at the neurotypical people I grew up with, the popular kids, the ones who fit in… man, my current friends are SO much more interesting. Trust me. It’s worth the wait.
Parents of Aspies: Your kid is not a freak, and there’s nothing to cure. Know that they WANT to understand you, and are more than likely trying their best to. Hell, I think I have a pretty good grip on functioning with Aspergers, and I can honestly tell you that neurotypicals STILL baffle me on a daily basis. I mean.. Really.
Your child’s tics, quirks, etc? They’ll probably get better. They will more than likely learn how to look people in the eye (I still struggle with that one, sometimes). They’ll get a better handle on managing meltdowns. Recognizing facial expressions ends up becoming pattern recognition, but it takes time. Truth be told, most people have NO idea that I have Aspergers when they first meet me. (Unless they met me within a few days after the tornado. Apparently THAT level of trauma renders me completely unable to keep things in check!)
Try to learn their “language”, be patient, and encourage them. The absolute best thing you can do for them, both short and long term – IMHO – is to get them involved in social outings with other Aspies.
Most importantly, I want you to know that – no matter HOW miserable your kid may be in school today – they can absolutely have a happy and healthy life down the road. They can have friends, an active social life, find love, and even have a productive career.
I have – seriously – the coolest friends a person could ever ask for. Wide variety of interests, just fascinating people. GOOD people.
I have an awesome husband. It’s great, we get each other like I never dreamed possible. He’s patient and understanding with my obsessive need to play “Vem Dancar Kuduro” a million times a day, and with my sensory issues. He doesn’t make fun of me flapping, and I don’t bat an eye when he rocks. We get each others jokes. It’s AWESOME.
In closing, another part of my inspiration to write this entry was some of the awesome questions that I’ve been asked, by parents of Aspie kids. I am more than happy to “translate”, if needed. If you have any questions about what it’s like to have Aspergers, communication, or just general interpretation, please feel free to ask. Who knows, maybe I’ll start a regular “Ask an Autie” column here!