Autism: You Can't Cure "Awesome"
Note: This post was first published on my original blog - Celebration Generation - on November 4, 2011. It was transferred over to this blog - existing comments and all - on 4/2/2021
Autism. 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 Autism? If there was an “It gets better” type campaign, especially for autistic kids?”.
I know I sure could have used some sort of autistic role model when I was a kid - I didn’t know ANYONE who was autistic, 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 - now autism - 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 autism has evolved over the years.
I’ve been surprised by the number of parents of autistic 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 autistics and parents of autistics - the “weird” things about me tended to be things common for autistics. 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.
Turns out, texture issues are very common. My husband - also autistic - has his own texture issues. For instance, he needs to cut labels out of shirts before he can wear them, or they’ll drive him CRAZY.
- 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 autistic 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 autism - 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 autistics, 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 autistics 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 autistic is the fairly recent rash of autism 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... Autism is not a disease. There’s nothing wrong with me, or with any other autistic.
I get so upset when I see parents freaking out that there is something wrong with their autistic kid. Talk of finding a “cure”, etc. Well, guess what?
The way I see it, we simply run on a different operating system.
Autistics 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 autism.
Oh, and really? I’d rather have autism 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 Autism 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 autistics, 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 autistics... I see a need for those autistics to reassure parents of autistic kids that everything WILL be ok, and that their kid can have a “normal”, happy life.
Autisic 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 autistics.
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 Autistics: 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 autism, 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'm autistic 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 autistics.
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.
If I see a nubby bathroom carpet that I KNOW he’ll want to touch, I’ll point it out to him.
We get each other's 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 autistic kids.
I am more than happy to “translate”, if needed. If you have any questions about what it’s like to be autistic, communication, or just general interpretation, please feel free to ask. Who knows, maybe I’ll start a regular “Ask an Autie” column here!
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Interested in autistic - and human! - rights? Be sure to check out my line of Autistic Pride T-Shirts - and other items.
Thank you for writing this. I know many people who really need to read this. So good.
What a gift this post is and for me as a parent to hear first hand how you feel having Asperger's. Yes, it is true many of us parents of Aspie kids feel as though we are attempting to put together a puzzle, make the pieces fit to create that picture that makes sense to us. We need to realize that it won't make sense and that is OK! I would love to have my 9yo meet you, talk with you and get to know someone (an adult) with Asperger's. Hey... maybe we're onto something? Think about it! You are a talent inside and out and I'm so glad I've met you!
You did a commendable job on this. I'm curious...how exactly is one clinically diagnosed?
Also, excellent way to bust out the UNIX reference.
Clinical diagnoses of Aspergers is done by a psychologist. There is (in essense) a check list of things that they are looking for. If the patient matches enough of the criteria, then they are dubbed Aspergers. Not everyone will be deemed Aspergers, as we are looking at a spectrum here. The categories they are looking for are Austistic, Aspergers, or PDD NOS. They also check for ADHD with these tests, as that is also technically on the spectrum (atleast that is my understanding). The actual test is via interviews, and the results are somewhat subjective, so two different testers can come up with different results. But in theory the results should atleast be close.
GOOD GOOD GOOD!
Thanks for the perspective! I have never "known" an adult with autism. My nephew is undergoing tests for autism. I'm going to pass your post on to my sister and her husband.
I love this... thank you!
"Aspies are to neurotypicals, as UNIX is to Windows" - That is simply brilliant. Signed, an Aspie Unix Geek...
There is an evolution of thinking in the NT parents of older kids on the spectrum, of which I am one. When your child has an initial diagnosis of autism as a toddler you rely very heavily on 'professionals' and what the internet espouses with regards to 'early intervention.' Much of that could be tempered with declarations of adults on the spectrum such as yours. My son is now 11 years old and my attitude about what is in his best interest has changed and evolved remarkably to this point. I don't doubt that it will continue to do so, but not without serious reflection and reading messages like this. Please keep putting your message out there because there will always be another generation of NT parents struggling to know what is in their children's best interest.
Thank you 🙂
The post is awesome & I am so happy you mentioned my son, your kindred spirit in destroying pens 🙂 I like the idea of "ask an Aspie column". I truly appreciate you coming forward and saying it gets better. Everything you write about Apserger's helps me to understand my son. I am sure you have already figured out that I am one of the ones that really does try to understand my son & his thought processes. He has definitely experienced others not understanding and not trying to understand. It is heartbreaking when that happens. Thank you for your info & advice. I am so glad to have "met" you.
And to the comment "Magneto was right". If you mean that Aspies are a step in evolution (or something like that) that is really interesting because I almost wrote a post about a similar idea. Maybe someday.
I ended up switching to writing about how neurotypicals are the one's not empathetic & are the ones that need to learn the autistic's way of communicating. As opposed to autistics always need to learn the neurotypical way.
You know, I've never read a comic book in my life, but damned if I don't ADORE the X-Men movies. I find them super easy to relate to, on many levels... and yeah, I had some of it in mind while writing this! Storm in "X3 - there's nothing to cure!", overall themes of being able to be yourself, fitting in with a society that doesn't get / is afraid of you... yeah.
My husband - who made the Magneto comment - and I have matching shirts that say the same 🙂
Some days, I'm a Xavier with regards to neurotypicals. Some days, I'm a Magneto. 🙂
We are definitely X-Men movie fans in our house 🙂 I am constantly thinking about NTs and Aspies/Autistics interacting. My son is so bright and funny and I just want everyone to give him a chance and be understanding.
To your other comment- yes that makes sense. I think my son gave up for a while. We are really working to build his trust. I don't want him to be too trusting but there are some good people.
Thank you for everything you do. I truly appreciate your insight here, on Twitter & comments on my blog 🙂
You're awesome. And you're right, you can't cure awesome! 🙂 <3 from an internet-only (so far), non-Aspie (though I also hate the feel of chalk...and terra cotta pots - ew!) Mensa friend.
Magneto was right.
Also, with regards to empathy... that's one stereotype about us that I've never understood. If anything, I'm MORE empathetic than most neurotypicals I've known!
For instance, one of my earliest memories: I was in kindergarten, and some kid was getting beaten up for some candy. I can't even tell you how disturbed I was by it. It was almost.. a consuming sort of instant depression. The idea that someone would have so little respect for another person, to do THAT... and for something as stupid and meaningless as CANDY. I was like 5, and already giving up on humans, if that makes any sense.
You Rock. I have some whom have the read this. I'm passing it on.
love this! my husband (who has aspergers but can not stand the term aspie) just came in the room and i read him the title of this post and he got so excited. there are so many things that i love about him that are the way they are because of aspergers. 🙂 our son is on the "higher functioning" end of the spectrum (not aspergers though) and my brother has aspergers too.
Hi MarfMom,
Thought HFA and Aspergers is the same thing, is it not?
Thanks
Kay
"You can't cure awesome" is the banner I will live under from now till forever. My 6 year old boy was diagnosed last year, right after he started school. This led me to surmise that my dad, his dad, my aunt, several cousins and myself are all living on the spectrum. My son is so awesome, and the weirdest thing about the diagnostic process for us was that so many of the things we love THE MOST about him seem to be flags for the "disorder". Like, on the question sheet I had to fill in at the psychologist's office, I was asked something along the lines of "does he play with toys in ways for which they were not designed?" I can't remember exactly how the question was asked, but it must have been quite loaded, because I remember I qualified my yes answer with "he uses toys ALTERNATIVELY" and the psychologist gave me this pitying look like "aren't you being positive! aren't you brave!" And I just thought "I need to get my awesome kid the HELL out of here!" This is a kid, when you give him some $50 piece of plastic crap that you call a toy, squints his eyes and says "weeell, I guess I can use SOME parts of this for my inventions..." No way I'm letting anybody mess with that kind of awesome. And in the IQ part of the test he comes up as Low Average, which is hilarious to anybody who knows this insanely smart deep thinker, but of course the test was incredibly pencil-heavy, which is his worst thing, and the woman administering the test talked to him like a baby, meaning he couldn't find a single good reason for putting in the massive effort that so much pencil-work would require of him. And she's supposed to be one of my state's leading experts in Aspergers. Anyway. Awesome is right. Thanks for the lovely post. 🙂
Katy, your son sounds completely awesome. How BORING would it be to just use toys in the way they were intended?
You rock Marie! Accidentally ran across someone's facebook page (while searching for someone else) who had "liked" a link about you making the beautiful butterfly dress and the story behind. Next thing you know, here I am, ready this awesome post to my 14 year old and 47 year old Aspies (and our 12 year old NT). What a blessing you are! And we are so happy to hear that you have started an Asperger's-specific blog! Thank you.
You are so right--you can't cure Awesome and we should stop trying to. I am sharing your post because it's so awesome I just can't not share it! Thank you so much!! (sorry for the excessive exclamation points...)
My nephew is an Aspie and I love everything about how his mind works. At two he was developing plans for a cleaner operating nuclear reactor. Beats the usual Elmo-worship of most two-year-olds by a longshot. Now he's twelve and studying airplane crashes and wants to work as an air traffic accident investigator. He'll make the best one and safe lives one day. I'm so excited to continue to watch him grow and develop and succeed.
I find this whole discussion very amusing. I was going over websites trying to better understand my girlfriends son so as NOT to leave her. And instead of finding answers all I hear are excuses and statements condoning non acceptable public behavior. You people are talking about dating and baking cakes and watching movies...she took this kid out of school because he wrote a letter saying he would rather be dead than in that school and was going to kill himslef or others. So that to me screams a 72 hour mental hold in a hospital right there for threatening to hurt himself and others. There are mean people everywhere, in schools and on jobs. So what's next ? If you have someone who doesn't understand your unacceptable quirks you can quit everything In life because of it? If you make yourself a big target in public your more than likely going to be one. If you blurt shit out and make retarded facial expressions and ignor waitresses in restaurants when they're trying to get YOUR order, what do expect? My G/F's son is 17 going on 10. He can't/won't "IMO" even pick up his underwear and clothes off the bathroom floor. Your talking about watching a movie??? He won't stop playing a video game long enough to take his time pissing in the bathroom as to not get it all over the floor! Comfort eating??? Oh yeah, it's a safe place. And the next place for it is under the bed and in the closet and all,over the floor...popcorn everywhere, cereal from the kitchen to the bedroom on the floor, apple cores under the bed etc...so I guess because he'll stop his game at 4 in the a.m and go take a shower and interrupt the whole damn houses sleep he's not a nasty child right? That's BS. Unless you are a full fledged retard you can and do know the difference in picking up your underwear. Your obviously smart enough not to get in the shower with them on aren't you? You know where they are because you were smart enough to take them off right? You have to step right over them to get out of the bathroom right? And the come in and out of it three more times before you go to sleep and see them because your not blind right? Then your just a lazy kid who knows mommy will do it for you!!! Because it's easier than dealing with UGGGGGGGGGGH when she ask you to do it and the head throwing back crap and dumb looks. You say awesome...I say spoiled and made up excuses for unacceptable behavior. Pavlov's dog! If you walk out the front door of the house everyday. And everyday I'm standing there and punch you in your nose. What are you going to do after a period of time? Go out the damn back door I would imagine. So your telling me that with enough reinforcement ( no not punching a kid in the nose for all you bleeding heart liberals out there) like repeatedly telling him " pick up your clothes in the bathroom" that he cannot and will not remember that on his own one day? I think you people get so use to a king up excuses for each other that you can't tell what's normal and not normal behavior anymore. It's the perfect excuse in life to do whatever the hell you please and get away with it. Oh, let's rape the neighbors daughter and say I thought it was dating! But then again, that would mean he'd have to leave his room! The kid has two friends and they are on line. His mother asked him specifically if he had a car would he go to their house and play that game with them. His response was "WHY" would I. Says it all. We can't go to a restaurant and enjoy a meal because first it's the trauma of his mother having to order his food for him. And him snapping at her when she asks him what he wants. And of course my response would be " order yourself or don't freaking eat" after he yelled at me once. Then we have to jump up and run because he's got to get back home to his room and that game ( even though he's got his iPad game right in front of him) banging away on it through the whole damn meal. So it's either deal with that or run a delivery service for him which his mother does. She'll hand deliver meals to his room because he's too lazy to get up and go half the time and can't stop his game to get his own food from the kitchen. And if he does its in such a hurry that it's not worth the time to we have to spend to clean up after him. I think it's a perfect combination. I know they say that there isn't a gene or whatever that carries Autism ( let's call it what it is people since they dropped the ASPIE moniker in 2014) but I believe it is directly related to the parent. Because you guys fit perfectly. They cannot come up with one good reason to NOT be lazy. And you guys ( parents) can come up with a thousand reasons why they shouldn't be made or even asked to do a damn thing. The only "awesome" I see here is an Awesome Combo of lazy parent lazier children!
Well then.
Congrats on writing the most hateful, ignorant pile of drivel I've read in a long time.
I hope, for your girlfriend's sake as well as that of her son, that you DO leave her. No one should have to put up with someone as nasty as you.
Sounds like you're the wrong person to co-parent someone who is in the next iteration of human evolution, William. I hope you leave your girlfriend as well.
Also, you might bother learning the difference between "your" and "you're;" otherwise you're the one who comes across as retarded.
William -
My first thought when I read your response was exactly what Marie said - I hope you DO leave them. You aren't helping at all with this attitude.
I'm not on the spectrum, but I have friends and family who are. Here's what I learned: people with autism are as different from each other as neurotypical people (those without autism) are from each other. Some may be jerks. Some are amazing people. Having autism doesn't make some automatically good or bad - it just means that they have some differences with how they process and react to things. My understanding of this blog is that it's about explaining the differences - not about saying that autistic people are all automatically perfect and have no flaws.
I've known neurotypical teenagers who talk back and don't pick up their clothes and spend all their time on video games. So it sounds like some of what he's going through isn't necessarily autism, but just being a PITA teenage boy. It sounds like there could also be some poor parenting going on - if mom has let him get away with things his entire life and never had consequences to anything, then he would end up spoiled rotten, just like any neurotypical child would who was never given boundaries or taught right from wrong.
It's unfair to take the actions of 1 person and attribute every personality trait that annoys you to autism and say "see - autism is bad!" That's as short sighted as taking 1 person you know with red hair and assuming that red hair means that people are all abusive jerks who cheat on their spouses and, therefore, having red hair is a bad thing and people should be ashamed of it.
Stupidly ignorant comment. You should be ashamed.