Today's blog is an essay by an adult with Asperger syndrome who goes by the "nom d'internet" Catsidhe. This story of self-discovery is particularly poignant, since Asperger syndrome will no longer be an official diagnosis as of May, 2013.
Do you have a story that's similar to this one? If so, and if you'd like to see it on this site, please send me a personal essay that's no more than 1,000 words - or write a shorter piece using this form!
I don't remember when I first heard of Asperger's Syndrome.
When I was a child, Asperger's Syndrome simply didn't exist. It wasn't even described in English until I was eight, and it didn't enter the DSM until I was nineteen. It's not like the introduction of a new diagnosis prompts people to systematically examine the schools, in any case. Either way, when I was a child, I knew what autism was: it was the classic Idiot Savant, staring into the distance and not saying much and calculating the weekday of August nineteenth, 4087BC. It certainly wasn't me.
There wasn't anything to describe me, except for the usual "nerd", and "geek". There was a totem pole of status at school, and I was acutely aware of being firmly at the bottom of it. It wasn't that I didn't try to make friends; I tried with increasing desperation.
In hindsight I now know that I was that kid. The one who talked all the time about stuff that no-one else understood, and hung around like a bad smell, and never got the hint that nobody wanted him around. The annoying kid who wouldn't go away.
I survived primary school in the library. At high school, they didn't allow me to stay in the library all lunchtime, so I ended up sitting at its entrance, with the other rejects.
Even the lunchtime D&D group sent me out to buy lollies.
I got into a selective-entry school for years nine through twelve, and I seriously don't know where I would be if not for that. Almost all the good things in my adult life can be traced back to that move and its consequences.
I studied computers. Thanks to my father, I had been exposed to computers longer than almost anyone else I knew. Computers are a system complicated enough to be fascinating, but not so much as to be impossible. People, on the other hand, don't make sense, and hold grudges if you try and fail. I know where I am with computers. (Doing IT support, I have seen people distressed, fumbling and lost with computers, but completely at home chatting about nothing. I'm almost exactly the other way around.)
After a while, I became aware of a running joke among hacker circles: the Aspie. Humourless, literal and unsocial, if not antisocial. And yet, there was a certain amount of respect in there as well. An Aspie might not understand casual conversation or eye contact or personal hygiene,but they understood computers like no-one else. And any idiot could make eye contact.
One day on a whim I got on the internet and started looking up this joke. There was a test, which I took. Not long after there was a discussion on an acquaintance's blog featuring the same test. Other people were boasting about their scores: "I got 10!" "I got 15! And I'm a woman! I was meant to be an engineer LOL!".
My score was 42.
The joke was officially Not Funny Any More.
I investigated quietly, and found that the descriptions of Asperger's were descriptions of me. Sometimes scarily so. And so, after a year of struggling with it, I came out publically with my conclusion. And after some prompting, I went in search of a proper diagnosis -- a fight against my own nature as much as for finding help. (When someone goes for help for a social disorder, supplying them with a long list of numbers and a hearty exhortation of "good luck" with cold-calling them is less than helpful.)
Another eight months later, I had the diagnosis too.
Retrospectively, now, my whole life made sense. Retrospectively, many of my flaws became symptoms, which <i>weren't</i> because I was lazy or stupid, but because my brain is not structured to work in that way. There was an explanation beyond that I was a failure as a human being. I don't think I can give justice to the sheer relief that knowledge grants, even while it forces a disquieting re-evaluation of one's entire life in its light, as well as a fundamental change in one's self-image.
I can't stand a room full of conversations, I never could. Now I know about Auditory Processing Disorder. I dislike bright lights and tight collars and the sound of people chewing and the feel of upholstery foam. (Even the thought of that last makes my fingers itch up to my shoulders.) Now I know about Sensory Processing Disorder. I can't
remember names or faces to save my life. Now I know about Faceblindness. (In my own case, I can recognise faces, but I can't visualise them, noteven of my own children.) I could never explain my feelings, even while my heart was breaking or I was being crushed under the cold gray stone of depression. Now I know about Alexithymia.
These aren't extra diseases which I am collecting because it's cool, These are descriptions of how I am. These are handles I can use to comprehend my self. With them, I can grasp my own deficits, and figure out how to work around them, or accept that there are some things I just can't do. It's not that I have Alexithymia and APD and SPD; I have Asperger's, and these other things are aspects of it.
All that said, I'm high functioning. I have a job, and a wonderful wife, and wonderful children. I socialise, in my own way. But that isn't to say that I don't have a condition which makes all that so much harder.
When my IQ was tested for diagnosis, some aspects were off the scale. Others, mainly involving working memory, were dismal, and even then this is after my workarounds and tricks. If I hadn't spent my life compensating, I have no doubt that my scores in those areas would be far worse. I have to work hard at human interaction, and the very process stresses and exhausts me, whether with my workmates or my family.
When people start talking about natural variation, and "you aren't crippled by it, therefore it's not a disability, therefore you're not really autistic" I feel like I'm being dismissed for not being disabled enough. I'm verbal (most of the time) and intelligent (without false modesty: with an IQ firmly in the top 2% even counting my deficits, it's hard to argue that I'm not) and relatively successful. But that doesn't mean it's not a daily struggle to pretend normality, that I'm not perpetually anxious and stressed and tired by everyday life.
Life can be painfully bright and loud and chaotic. I wish I had more time alone in familiar darkness. But its lack won't kill me.
I am as I am: I cannot be otherwise.
I scored 24. Always good with faces, lousy with names & dates. Never understood people as a kid, read a lot of my mothers psychology & sociology books as a teen. They kind of made sense after that, at least I had a handle on how & why. I found I used to push people, just to see where they’d go, or what they’d do. After a while you get good at it, people are predictable, especially when playing computer games one on one. The computer was far more challenging to play. Got into computers early, when there were no magazines. Took to them straight away, they made sense.
Good article.
“Nobody realizes that some people expend tremendous energy merely to be normal.” Albert Camus
I know it’s hard for me to understand how hard it is for you and how stressful but I have to say that I read this and think, what a brave, strong, courageous, cool man. My dh and I have a three year old boy on the spectrum, he doesn’t fit neatly in (like all the stories I have read) and I only hope and pray that I can help him be strong, learn, try, and be as happy as possible. I know it must feel overwhelming for you at times, but your story gives me hope. Thank you.
Thank you for writing this: it is the closest thing to how _I_ (w/ AS) feel and think that I have seen, and thus I can point out your article to those near me to help them understand. Good luck to you.
My sixth grade math teacher tried to “out me” as an autist during a telephone call to my mother, she looked down and asked, “you’re not autistic, are you?”, “No!” i said, and quite probably alluded to his mental competence…
Thus was my life of denial born.
“But that doesn’t mean it’s not a daily struggle to pretend normality”
My struggle ended some 40 years later in complete collapse, ultimately I had to ‘kill’ the life I was leading up to that point and begin anew.
Amen to that, now living unabashedly asperger, and absolutely disinterested in pretending my life away.
Thank you for this article. It explains a lot, say, it explains everything. Being able to put a name to a life-long ‘problem’ is helpful, comforting, and now, I can forgive myself for being such a social dysfunction. I can now forgive myself for being an embarrassment, even though I always tried to be normal. It is just abnormal for me to be normal.
Couldn’t have said it any better. My exact thoughts/general experiences.
“I feel like I’m being dismissed for not being disabled enough”…yes, that is the impression one gets about aspergers or high functioning autism – whatever the label. One feels invisible both because of the attributes of the disorder itself as well as how it’s perceived/misperceived by others.
Thanks you for this personal reflection…
Thanks for a great piece! My oldest son is an Aspie, and he too falls into the “not diabled enough category”, so his younger brother with Autism seems to get the “get out of jail free” card from the world, and my Aspie just is always feeling out of place. I hope some day when he is older, he can do what you have and see that he is not wrong in the world, but he just has a condition that changes the way he interacts. I hope people see, from this writing, that even successful Aspies have difficulties in day to day life that most of the rest of us will not fully understand, and that a little bit of kindness and understanding can really ease the load!!
Really insightful comment – you’ve hit the nail on the head as far as I’m concerned (as an Aspie myself).
I think it is ridiculous to say that just because you function well in some arenas that you are not disabled. That is like saying a dyslexic person does not need help because they can do math. I have met some people with Asperger’s who functioned more poorly than some with autism, because their social disability and anxiety issues had so isolated them. In some cases it is better to be mostly unaware of how different you are.
Your experiences are so similar to mine that it’s uncanny – I’ve got a knack for computers, I’m a primarily visual thinker who can’t visualise faces, there are certain sensations that I recoil from. I’ve had IQ scores max out at the top of the scale yet there are things I can’t do that NT people manage effortlessly.
And I’ve had this: “[...] I feel like I’m being dismissed for not being disabled enough.” When people find out about my condition their reactions range from understanding through pity (which I hate – I find it condescending), right down to utter disbelief. I did say to one person who said I “looked normal” that AS doesn’t come with a sign across my forehead! The worst was somebody who said it was just “fashionable” to have ASD, ADD, ADHD or similar recently-defined conditions, dismissing them as not “real”. I could have screamed at such a display of ignorance.