Being a self-diagnosed Aspie is not the same as being a plastic Aspie!
Yes, I am a self-diagnosed Aspie. I came to this conclusion after a lot of research and soul-searching. It's certainly not something I came up with on a whim.
I first heard about Asperger's when I was about 19. There was something in PC Format issue 135. It was only a small part of a larger article, and in some ways I think many people, AS or not, could relate to it.
But something flashed in my mind. I can clearly remember, even now, the feeling I got when I read it.
"Is this why I am so strange?"
As a child, I was pretty oblivious. My periods of mutism (I wouldn't speak to anyone at school for the first week or two of nursery and would never talk to strangers) and my love of reading earned me a reputation of being a very shy nerd.
Once into infants, then juniors, naturally the class was tacitly segregated by academic achievement. The higher-achievers had their own little clique. Technically, I should have been in that clique. Academically, although by no means a genius, I was above them in achievement. Instead, in the later years of junior school, I became the target of that group's hatred.
Of course, my oblivious nature meant I had no idea for a long time.
They seemed like a different breed altogether. I couldn't relate to them at all. I preferred to hang out with the average-ability kids, because they weren't too ashamed to play Hide-and-seek and Had.
I was confused by the behaviour of one of the girls in the elite group. She lived just up the road from me. Her parents and mine were friends. Her older sister was friends with my older sisters. She would come over to my house on weekends and we'd play in the garden together. I thought she was on my side.
And then at school, she tried to turn my friends against me. I believe she and her group did actually try to bully me, but being so completely clueless, I had no idea. My closest friend told me that she'd been saying nasty things about me and trying to get her not to talk to me anymore. I still didn't get it.
It wasn't until Year 6, when they wrote a nasty note and left it in my book, that I finally realised.
That theme of cluelessness carried on into secondary school.
Starting Year 7 was a pretty bewildering event for me. Everyone else seemed to settle in immediately. How did they not have difficulty finding their way around, I would wonder. How can they feel so at-home straightaway? How do they all make friends so quickly? What on Earth are 11-year-olds doing having boyfriends?!
It was so strange. Everyone else was turning into teenagers, but somehow, I got left behind. And I didn't know why. There was just this feeling of "I'm not like the other kids".
I had one friend from primary school who went to the same secondary school as me, and for the first few months we would hang out at breaks and lunch, but suddenly she went from being an uncool girl like me, to someone who smoked and stayed out late.
And I was back to being all alone again.
Luckily, I suppose, I had started to earn the reputation of being the class nerd. That meant that there were enough crawlers who would be willing to tolerate me during lessons. So it seemed I had made some "friends".
And yet every break and lunchtime, I would be alone. I dreaded those times, because it meant being vulnerable to the attentions of bullies. In that respect, I was lucky. Apparently, sometimes people would try to bully me, but my total cluelessness meant I had no idea. I would only find out later, because a classmate would say, "Did you see how xxx was trying to bully CB?" Oh. So that's what they were doing. I thought they just had a weird fascination for my bag.
I guess my cluelessness was something of a saviour.
And on the other hand, turned me into a doormat.
These new girls would insist on sitting next to me in class. They would call me their friend.
Yet outside of lessons, they didn't want to know.
I remember, in Year 11, vaguely feeling that there was something wrong with that. Why did they always wait for each other after lessons, but I had to rush to get all my stuff packed up and ready to go the moment the bell rang, or they would leave without me?
Somehow, even after all these efforts, I would still end up alone every lunchtime.
And you know, it took until the very last day of school to finally clock on. On the last day, as you may know, it's custom to write goodbye notes in each other's homework journals. Most of the messages were nice, but one of my so-called friends wrote a very blunt message: "I will not miss you or your stupid immature three-legged cat." Clued in, now? Nope, not yet. She must be joking, right? I mean, she's just trying to be funny?
No. I realised, later that day, that she hadn't been joking. In combination with finally acknowledging that I had indeed always been jettisoned the moment lessons were over and they had no need of me, I finally realised that none of them gave a damn.
Sitting next to me meant doing better in lessons. That was all.
It was depressing to think about. I think even now, the sting hasn't gone entirely.
Looking back, I don't really blame them. I was childish. I still wanted to play with my Kitty-in-my-Pockets while they were going to raves and snogging boys. I refused to swear. I liked indie and rock and 99.99% of the school were into R&B. Apart from school, I rarely went out. (My parents were really strict and I certainly wasn't allowed out without an older family member.) I would go on and on about my favourite subjects (one of them being the three-legged stray cat we temporarily adopted that so annoyed the writer of the mean note). Apparently, I chatted rubbish an awful lot ("How do you write so well when you chat so much rubbish?" being a verbatim remark I got from a "friend" during an English lesson).
So armed with this knowledge, I set about being more "mature" for Sixth Form. One of my fake friends did end up becoming a real friend during this stage. Although it didn't really matter so much anymore. We had computer rooms! Two of them! With super slow RMs and the entire school network running on a single ISDN, which meant it could take my entire lunch hour just to download one email.
Not that it made much difference to being picked on. I'd still have stones thrown at me by first years. I would never be able to confront them about it. My brain would shut down and my only wish was to get away from the situation as quickly as I could.
No change there.
Unfortunately, nothing came of any of my academic achievements. I meant to go to uni, but by the end of Year 13 I'd had enough of exams. I certainly hadn't the heart for a degree. And anyway, university meant travelling far, having to adapt yet again to a completely unfamiliar environment, and if I had so much difficulty finding my way around a secondary school, how on Earth would I be able to find my way round something so big as a university campus?
So I ended up spending a year in unemployment hell. Being treated by the Jobcentre staff like a fraudster, because I "shouldn't have any problem getting a job in retail".
I learnt another hard lesson: everything they taught me about doing well at school, that good exam results means good job, was a total lie. Employers only care about social skills. I failed at eye-contact (I didn't make eye-contact at all until I was 14 and became aware of my aversion to it, and then ended up over-compensating by staring. Now I know why I have this problem, I can make eye-contact for half a second, then focus on the eyebrows, mouth or nose).
I had no idea that when they asked you a question, you were not meant to answer honestly, but in fact give a highly embellished version of a half-truth. That the whole interview was really just some kind of game. When they say this, they really mean THAT and expect you to say something like THIS. Whatever you do, DON'T be yourself!
It wasn't until I had this all spelled out to me by my sensei about 4 years ago (really, he was just a trainer for the much-derided A4e, but he did so much for me that I had to elevate him to the rank of Sensei) that I realised. Then it was like, "Ohhhhh! So that's how it works!"
With this, I managed to get the job I have now. Which is certainly not my ideal job, but the prospect of having to go through the whole acclimatisation process again, not to mention the terrible anxiety caused by having to go into an unknown (which at its worst, makes me physically sick and close to fainting) means I may as well stay where I am for now. My manager is pretty understanding and when my family mooted the Asperger's issue 2 years ago and I ended up a crying wreck for days, including at work, she was really nice about it. She got me a pen and paper so I could write instead of speak. She said she had to admit she had no idea what it was, but it looks a bit like Asparagus. I can think of some managers where I work who wouldn't have dealt with it so sensitively, let me tell you.
Ahh yes. We haven't got to the actual self-diagnosis bit yet, have we? Typical Aspie monologue
So at 19, I first learned of Asperger's Syndrome from that article. I'd hated myself for many years; I would frequently berate myself: why can't I be like normal people? Then came that article and the thought: is this why I am so strange?
I was actually allowed to use the Internet at home by that age. I remember looking it up, probably on Wikipedia. "This isn't me," I thought. "I'm not so bad as that."
So for a long time, I forgot about it. I didn't have Asperger's, I was just full of fail, because I was short and brown and shy and uncool. But every now and then, I'd have "Aspie moments". Something would happen that would give a flash of realisation: "I am not normal."
After starting work, it got worse. I could no longer live in my bubble. I had to interact with customers, colleagues. People would try to initiate conversations and I had no idea what to do with their remarks. I would stand there blankly, wondering what the point of that comment was. I just didn't get it. I still don't.
Then two years ago, my mum read something about Asperger's Syndrome on the Internet and diagnosed me there and then. Although I have to qualify it by saying she doesn't really have a clue. I can say anything and she'll say: "It's because you're Aspergic", bless her. But she means well. I suppose she just didn't want all those hospital visits she dragged me to (for an eating disorder I didn't have and "weird behaviour", including my mutism) to be in vain. Since the doctors eventually discharged me with "She'll grow out of it" (and I drew a huge sigh of relief -- too soon, but that's another story -- because I am positively phobic of blood tests which they always insisted on giving me), she eventually decided I must be cursed by some enemy of the family. I think, when she heard of AS, she was just glad that she finally had a plausible reason for all the trouble I caused her for all those years.
Well, I wouldn't have thought anything of it (after all, my oldest sister has also in the past diagnosed me as schizophrenic and then bi-polar and I know for a fact I'm neither), except for the fact that I had a feeling that she was right.
I did more reading. Not from Wikipedia, but from accounts by Aspies themselves. And as I read of their day to day lives, the difficulties they faced, the way they thought, I thought: "This is me! This is the first time anyone has ever described how things are for me!"
I noticed so many behaviours that mirrored my own: the stimming, the childlikeness, the inability to relate to my peers, the monologuing, seeing eye-contact as a threat, the obsessive interests and information hoarding, moderate to severe anxiety, the difficulty converting picture-thoughts into words, the mutism, strong sensory aversions, obsessing over details -- it was all there.
It also meant a lot of repressed memories were dragged up (hence the four days of solid crying and almost total mutism).
But at least now I have a better understanding of myself. I still have periods of depression, but they are neither so bad nor so frequent as they were. I am still unhappy with myself, but at least I know I am not entirely to blame.
And have I ever used AS as an excuse to be rude? No. Why would I? The only excuse I use to be rude is that if one behaves like a total jerk, then sometimes one deserves a bit of rudeness thrown at one
I'd still rather defeat them with logic, though.
"You do NOT have Asperger's!"
I have come to expect this statement from ignorant neurotypicals (not all NTs, just the ignorant ones). Reasons for immediate dismissal I've received: "You buy presents for your family, so you can't have Asperjer's!" or "I've worked with autistic people before and there is NO WAY you have Asperger's".
To their credit, they have at least actually met me and seen my NT-impressionism. So I guess I can overlook their ignorance, even though someone who only sees me for a few minutes at work is not really in a position to think they know about my entire life history and what I am like when I am being myself and not pretending to be "normal".
But it was a shock to see the same diatribe spouted by Aspies, too. Aspies who have never even met me -- heck, Aspies who don't even know that I exist! I can't be bothered hunting down the specific deviation, but the comment was something along the lines of: "Self-diagnosed Aspies are just using it as an excuse to be rude. They aren't even real Aspies. Not like me! I have a shiny official diagnosis! Looooook! Shiny!"
And having an official diagnosis, I suppose, makes it okay for this person to be rude.
Okay, so I'm being unnecessarily bitter about this, maybe. But really? Elitism much?
I don't deny for one minute that there are people who will use Asperger's as an excuse to be deliberately rude. In fact, I know someone in real life who does this exact thing and it's sickening.
But does that mean that every single self-diagnosed Aspie is a faker? If one doesn't get an official diagnosis until the age of 60, does that mean that one was neurotypical until the moment the magical official diagnosis appears? Get real.
And if having an official diagnosis from a professional is the only way to have "real" Asperger's, how is some random 14 year old sitting behind a screen qualified to say that I don't?
Your logic-fail, let me show you it.
Reasons for not getting a diagnosis
There are multiple reasons some Aspies remain self-diagnosed. I'll mention the ones I'm aware of.
1. Self-diagnosis is enough
For many, just knowing WHY one has had all these difficulties and the feeling of being the odd one out is enough. If one has supportive family and friends, and a job that suits them, then nothing else may be needed. An official diagnosis probably won't change anything for them.
From NHS Choices: Getting a diagnosis of autism in adulthood can be a mixed blessing and some people decide that they are happy with self-diagnosis.
(Although the cynic in me says they just want to save money.)
2. Being put at a disadvantage
I don't know if it's still common practice, but for the job before the one I have now, my medical records were checked by HR when I started working there. Some employers will not even be willing to give someone with an AS diagnosis a chance. Why put yourself at a disadvantage if you don't need to? Other reasons are that custody of children may automatically be given to the non-AS parent, someone with an AS diagnosis may not be able to adopt, and so on.
I'm told that in the US (and possibly other countries), having that diagnosis means you have an existing medical condition and your insurance premiums will go up. Not everyone has that kind of money to throw around. Which brings me to reason three:
3. The facility is just not available
This could be either the personal cost of seeing a specialist or the general lack of a facility you can access. It may just be that one cannot convince their GP to refer them, for whatever reason. We are lucky in the UK in that we have the NHS and the Autism Act 2009, which states that anyone requesting a referral must be given one. But not everyone is so fortunate. Some may be desperate for a diagnosis, but it's just not an option. Accusing them of being "fakes" is hurtful and just outright rude.
I may be the only one in this category. I cannot even visit the GP by myself, seriously. It's that feeling of being totally lost and having no idea of the protocols involved in getting an appointment (I'm serious). So I cannot even get to the stage of asking for a referral. I mean, I could take my mum (which is what I always do when I get so desperate that I can't put off seeing the doc any longer), but somehow I don't feel comfortable doing that. And I'm so used to hearing "You do NOT have Asperger's" and being 100% hopeless at defending myself, that even if I did manage to avoid the mutism and ask, and got that response, I'd reply with an "okay" and go home.
Oh and did I mention that hospitals are as big as universities and easy to get lost in?
How about some new terminology?
So does it still bug you that I am a self-diagnosed Aspie? Well, here is an alternative term you can use:
A non-Aspie who has difficulties making eye contact, stims a lot, is obsessively pedantic about spelling, punctuation and grammar, loves to monologue (see previous 9,444,000 lines), suffers periods of mutism (sometimes lasting years), suffers severe anxiety when placed in unfamiliar situations without support and sometimes even with support, loves walking on tip-toes, has obsessive interests only to go cold on them and become obsessively interested in something else, was never able to relate to peers in childhood, and in adulthood prefers the company of over 50s and her nieces and nephews to people her own age, tends to interpret things literally, doesn't get social rules, always thought that if someone said something, they meant that and not something opposite, prefers to be alone, has difficulties absorbing spoken instructions, has strong sensory aversions to certain tastes and textures, can't multi-task, has the awesome skill of object empathy, has absolutely no desire for marriage and kids even though in her culture this is the one thing that every female of her age wants, spends most of her time in her own fantasy worlds and shuts down when overloaded.
Stick that in your stamp and smoke it, pal.