Log In or Create Account
Back to Blog
PERSONAL

0

4,051
I don't have Asperger's!!
6 years ago4,554 words
I saw some kind of psychologist person at the cancer hospital today for an assessment, after mentioning my mental health issues to my cancer doctor months ago, during radiotherapy. I hoped to get a proper diagnosis of Avoidant Personality Disorder, not because it'll change anything, but because I feel nobody would take me seriously if I'm just going on a self-diagnosis. Instead, I just ended up talking to her for two and a half hours about pretty much my whole life story, which included insisting that I don't have Asperger's, not for the first time, which then led to me wondering if I actually do, sigh...

I had a dream a couple of days ago where I went to see this person, and in it, she was a Muslim woman wearing a headscarf. While waiting for my appointment today, I saw a woman in a headscarf approaching, and knew immediately she was going to call out my name. And she did! She mispronounced it though. She said "poosdonewolf". An interesting instance of prescience, anyway!

I had a vague idea of what to expect when going in. While having radiotherapy, I mentioned to my oncology doctor that I've been struggling with these avoidance issues all my life, that they've been a much bigger issue than the cancer or its treatment, and he suggested that he could refer me to someone at the hospital's psychology department to talk about it. I thought I might as well, so I said okay. That department is mostly for counselling people about the emotional distress of having cancer, though, so I expected that I'd pretty much just get referred - or 'signposted', as they call it - to someone else once it came up that my issues were more than just that.

Instead, she asked me a whole bunch of questions that she was clearly working through from a form, many of which were things like "when did you find out about the cancer diagnosis?" and "when you found out about the cancer diagnosis, how did that affect you emotionally?". Honestly I could barely be bothered thinking about all that, since it was a while back and hardly seems relevant anymore. It's not exactly the biggest issue.

I described the situation as best I could before she even asked any questions - that I'm fairly convinced from like ten years of research and self-observation, including getting a Psychology degree, that I've got Avoidant Personality Disorder - but I could tell that she was sceptical, which is fair enough. I imagine a bunch of people read articles online and become convinced that they have whatever they talk about, and a big part of the jobs of people like that must involve trying to direct them away from their dodgy self-diagnoses towards something more accurate.

All disorders aren't equally well-known though. When any kind of social awkwardness or inability to fit in with others comes up, it seems that that makes many (most?) people immediately assume some kind of autism condition, because why else would anyone possibly struggle with belonging?? She'd heard of social anxiety, but she had to actually look up AvPD on her phone, and when she did, all the criteria fit me extremely well, as I already knew from my past research.

I suppose she must have felt like her initial internal Asperger's assessment was right anyway though and that I was just in denial for whatever reason, and she said that I should go and have some assessment thing to see whether I do in fact have it. I suppose, being relatively common, that's an easier condition for people to know what to do with. I've already looked into this in detail in the past, but I'm willing to go to that anyway just to get it confirmed that I don't have it if nothing else.

It's annoying though, because it's been suggested a few times, so I can't help but wonder whether I actually do have it. I know it might seem that because people have suggested it often, then obviously there must be something about me that suggests I have it, but as I already said, some disorders are more well-known than others, and Asperger's/autism is more well-known than most. It's known as something related to social difficulties, so people see or hear about my social issues and that's the first thing that comes up as the likely cause.

I'm fairly sure I don't have it, but I've just done a little bit of reading, and want to talk about it anyway. Again! I think. I have talked about this before, probably?

(To be clear, I'm not writing this because I think there's anything wrong with having Asperger's. It's mostly the inaccuracy of me having it that bothers me... like calling a spider an 'insect'.)



Here's ∞ a page from the UK Autism website ∞, describing what it calls "Asperger syndrome" (I'm never sure if it's "Asperger" or "Asperger's", or how to pronounce it! Ass burgers.)

From the beginning:

People with Asperger syndrome see, hear and feel the world differently to other people. If you have Asperger syndrome, you have it for life – it is not an illness or disease and cannot be 'cured'. Often people feel that Asperger syndrome is a fundamental aspect of their identity.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some people with Asperger syndrome also have mental health issues or other conditions, meaning people need different levels and types of support.

People with Asperger syndrome are of average or above average intelligence. They don't have the learning disabilities that many autistic people have, but they may have specific learning difficulties. They have fewer problems with speech but may still have difficulties with understanding and processing language.


The first bit does apply to what I have, and it's what I've tried to explain before by saying it's more like a deformity than an injury. A base state; there's no 'better' state that you can 'recover' to. In my case though it's Avoidant Personality Disorder, not Asperger's.

I do feel ~different~, and I wouldn't say that I'm 'normal', neurologically. Obviously? But it's not as if it's a dichotomy, where you're either 'normal' or you have Asperger's, with no other alternatives. Say you have a room with 100 people, each of whom has a different coloured shirt. 80 are wearing red shirts, and the rest are wearing shirts of a variety of colours. All of those 20 feel different because they're unlike the majority, but that doesn't necessarily mean they're all wearing the same colour of shirt themselves. Or something like that.

I sometimes see things like "Asperger's affects each individual differently", which seems like something that'd be used to support diagnosing me as such. "Well, yes, you might not have most of these issues, but that doesn't mean you don't have Asperger's!" This psychologist said something that was essentially that. But if I don't have the defining issues, then in what way do I have it? "It might not have feathers or wings or two eyes or two legs or be able to fly, but that doesn't mean it's not a pigeon!"

(I think it's because I mentioned alienation that she assumed I had some of the Asperger's symptoms, even though all those non-red-shirted people would feel alienated in different ways. It's a symptom of being different, not a difference in itself.)

I don't think I've ever had any learning difficulties with anything, as far as I'm aware.

Some people with Asperger syndrome say the world feels overwhelming and this can cause them considerable anxiety.

In particular, understanding and relating to other people, and taking part in everyday family, school, work and social life, can be harder. Other people appear to know, intuitively, how to communicate and interact with each other, yet can also struggle to build rapport with people with Asperger syndrome. People with Asperger syndrome may wonder why they are 'different' and feel their social differences mean people don't understand them.


Say you have an average IQ of 100, and you find yourself in a room full of people with IQs of 60. Do you think you'd fit in easily? Maybe the kinds of things you'd say would be misunderstood, the ideas that you had would fall on deaf ears, even be met with mockery because you're apparently capable of what the others aren't so they knock you down to prevent you from being above them in some way.

I'm not saying that I'm some kind of brilliant genius who's misunderstood by the filthy hordes of mud-brained scum or anything like that. Not at all! But there are other ways to feel out of place than being unable to understand social cues.

I have no experiences of being confused about how other people are feeling. If anything, I'm hypersensitive to subtle social cues; even a slight look of discomfort stabs through my mind like a knife, and lingers as a scar. Something I've been particularly enjoying doing in Sindrel Song is using subtle facial expressions to communicate alongside the words that characters are saying. They're not things like happy = big smile, sad = big frown; it's more like eyes darting off to the side or down to the floor when appropriate, an eyebrow raised, barely noticeable. Tilting of the head ever-so-slightly. Each tiny thing drastically changes the feeling of a face to me, and I use intuition to decide on appropriate ones to use; I don't think about it or plan them based on what I've researched or worked out or anything like that.

I wonder with this though whether other people will interpret the expressions the same way that I did; whether they'll be receiving the same message that I meant to communicate. That'll be interesting to see. Perhaps my perceptions are different? I wonder. I mean, if they were, it's not as if I'd know it, right? I wouldn't have anything to compare to, directly.

I was reading through some of my old blog posts over the weekend, in a slump of crippling depression, which is a rarity (the reading of old posts, obviously; depression's very much not). I repeat myself a lot, it seems! Sort of embarrassing. I wonder if I do have memory issues. Something I rediscovered is ∞ this video of my characters Zaffre and Cerise having a silly conversation ∞, which was meant as practice for what I wanted to eventually do with Taming Dreams. I found it more amusing watching it again than I did when I made it! Maybe that was a kind of familiarity or nostalgia as much as anything. That's an example of what I mean about using facial expressions to convey as much as the words themselves, though I suppose in Zaffre's case, a large part of it is that his face doesn't change for long periods, which communicates exactly what I wanted it to, at least in my mind.

The article talks about the defining persistent difficulties that people with Asperger's face:

SOCIAL COMMUNICATION

Autistic people, including those with Asperger syndrome, have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Many have a very literal understanding of language, and think people always mean exactly what they say. They may find it difficult to use or understand:

* facial expressions
* tone of voice
* jokes and sarcasm
* vagueness
* abstract concepts.

People with Asperger syndrome usually have good language skills, but they may still find it hard to understand the expectations of others within conversations, perhaps repeating what the other person has just said (this is called echolalia) or talking at length about their own interests.


I have literally never once been sarcastic, not ever.

I remember a thought I had back as a teenager in school, about how many of my male friends seemed to talk in a relatively flat monotone, whereas I talked in an almost melodramatic way, varying my tone of voice all the time, as if to give what I was saying more colour or interest or something. It's still something that comes to mind occasionally (though it feels like such a childish thought to me now). One of my many strangenesses.

One of the many irritating things about written language is that it's not possible to capture tone unambiguously; you can use various techniques like italics, CAPS, punctuation, etc, but there's no guarantee that the reader will read it in exactly the same tone that you had in mind when you wrote it. It feels like a lot is lost because of that. I often wonder how differently the voice that people hear when they read my posts sounds to the one I have in my head as I write them. I've been tempted to record my voice or even make videos for years, but I'm not eager to open myself up to mockery even more than I already do!

I also use metaphor and explore abstract concepts in my work constantly. The whole thing about Sindrel Song is that all the aspects of its world and characters are linked metaphorically to important things in our own.

SOCIAL INTERACTION

People with Asperger syndrome often have difficulty 'reading' other people - recognising or understanding others' feelings and intentions - and expressing their own emotions. This can make it very hard for them to navigate the social world. They may:

* appear to be insensitive
* seek out time alone when overloaded by other people
* not seek comfort from other people
* appear to behave 'strangely' or in a way thought to be socially inappropriate.

They may find it hard to form friendships. Some may want to interact with other people and make friends, but may be unsure how to go about it.


This again seems like something which could have many paths leading to it. The second bullet point applies to introverted people in general (though I'd assume it's more severe in people with Asperger's?). Not seeking comfort could arise as a result of insecure attachments during formative years; if you'd never received comfort in the past, why would you expect to be able to seek it out in the future? 'Strangely' is vague too; could the same be said of people with schizophrenia, paranoia, etc?

I don't think I 'appear to be insensitive', but that's something I've wondered about, especially considering some drama I went through with the whole messy friendship I had at university a couple of years ago. Hmm. I suppose I could write a whole post about just that, so I won't go on about it here (I could write a post about it; that doesn't mean I actually will).

I think I'm odd, and behave weirdly in social situations, but in a way defined by CRIPPLING INSECURITY rather than inability to understand the other's mind. If you feel that you're only wasting the other person's time, and that you're going to say something stupid that they'll judge you for, you're probably going to display at least subtle signs that there's something up with you, which the other person will perceive as oddness. That awkwardness being infectious is one of the biggest reason I dread social interaction. Not just because I'll feel awkward, but because me being awkward will make them feel awkward, which feels far worse in my broken mind.

I'd love to make connections with others, but it's not that I'm 'unsure how to go about it'. If anything, I know exactly how I'd have to go about it, but in most cases I feel like I'd have so little in common with the other person that I can't muster up the energy to bother. Or that they'd have so much else going in their life that I wouldn't want to 'intrude'. In the rare cases I've encountered people I did want to talk with, I've sought them out and it's gone better than okay (at least at the beginning), but that's happened only a handful of times. Insecurities play a huge role here though; it's easier to just avoid everyone because it means I won't make social slip-ups.

REPETITIVE BEHAVIOUR AND ROUTINES

The world can seem a very unpredictable and confusing place to people with Asperger syndrome, who often prefer to have a daily routine so that they know what is going to happen every day. They may want to always travel the same way to and from school or work, or eat exactly the same food for breakfast.

The use of rules can also be important. It may be difficult for someone to take a different approach to something once they have been taught the 'right' way to do it. They may not be comfortable with the idea of change, but may be able to cope better if they can prepare for changes in advance.


Something that particularly annoyed me while talking to this psychologist relates to this. She asked what my daily schedule was like; I didn't realise at first that she was asking because of this, and I said I wake up at 5 and go to sleep at 'like 9', but that it's all over the place, changing every day, so some days I sleep in the middle of the afternoon because I'm so exhausted, etc. I also said I'm always trying to change things up to try and find something that's ideal for producing productivity (I experimented with biphasic sleep the other day and it worked amazingly well for a couple of the days, so I wrote a post about it... but then the next day, when I meant to actually post that post, I felt terrible, so annoyingly that didn't work as well as I'd hoped). A few minutes later, she suggested that I had a 'rigid schedule', which was one of the signs of Asperger's. Sigh! What wouldn't be a rigid schedule then? "I wake up whenever Nature whims it so~!" (Because of how circadian rhythms work, being so airy about it would probably mean you'd naturally wake up at the same time every day anyway...)

Oh, she also asked if I did anything other than 'sitting at a computer' all day, after I said that was pretty much my life. "What else could I do??", I said, because what else even is there? I've tried going for walks, fumbling around on my piano, playing non-PC video games, etc, but they're not as engaging as the many things I can do at my computer. Describing it as 'sitting at my computer', as if it's just one singular action, is stupid anyway; the computer is a tool for all kinds of different activities. I use it to draw, program, compose music, play games, watch videos, browse the web, make 3D models, etc, etc. And they're definitely not done with any kind of schedule! I wish they were! I keep trying to make one - "draw every day at 8pm for an hour!" - and it never lasts beyond like a day, if that.

Here's a weird thing that I discovered years ago, and which I think about every day because of the change it's made to my life: ∞ Did you know that it's better to squat than to sit when (what's the euphemism, uhhh...) birthing chocolate sausages? ∞ The research suggests it is! I found out about that when I was in my teens or early twenties or something, and have been doing it ever since. I hope you're picturing me now, naked as the day I hatched from my egg, squatting on the seat of my toilet, audibly grunting, sweating, shaking, and straining as I gift my previous meals life anew. You're welcome for that mental image. You should try that though, seriously! (I've actually wanted to mention it for ages, but it's such a weird thing to talk about. And I make a point of never oversharing!! SEE I CAN USE SARCASM DO YOU SEE)

I mention it because as soon as I found out about it, I thought "ooh! I should try that!", and I did. I was willing - eager, even - to change a long-established habit when it seemed like there was a better alternative technique. Would someone with burgers within their anus be willing to do that?!?!?!?!?

('Stimming'! That's a word I was trying to think of while talking to her, but it remained on the tip of my tongue until just now. It refers to repetitive physical movements that autistic children perform, which I never did.)

HIGHLY-FOCUSED INTERESTS

Many people with Asperger syndrome have intense and highly-focused interests, often from a fairly young age. These can change over time or be lifelong, and can be anything from art or music, to trains or computers. An interest may sometimes be unusual. One person loved collecting rubbish, for example. With encouragement, the person developed an interest in recycling and the environment.

Many channel their interest into studying, paid work, volunteering, or other meaningful occupation. People with Asperger syndrome often report that the pursuit of such interests is fundamental to their wellbeing and happiness.


This is another thing I wish I were capable of! One of my biggest things is that I struggle to focus my attention; am I a composer? An artist? A programmer? A web designer? I don't know! I can never decide. And I can never stick with one for very long either; I have to change around a lot to hold my interest.

I knew a guy in primary school who had an obsessive interest in The Titanic, of all things. He talked about it all the time, and it always seemed so weirdly random to me. I wonder - based on that and other things - whether he had Asperger's. I liked dinosaurs, but didn't talk about them very often because I didn't think anyone would care. Now, I'd love to talk about my games, but I feel like I need to apologise for even mentioning them when I do, because I don't see why anyone would have any interest hearing about something not directly related or relevant to their lives (ranting on my blog is different since I mostly see this as talking to myself in a way that others might be able to curiously peer in on). If I were to have a conversation with someone, I'd rather talk about our personal issues, and most of the few conversations I have end up going overly deeply in that direction, because I am such a lighthearted and fun laugh to be around.

SENSORY SENSITIVITY

People with Asperger syndrome may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, they may find certain background sounds, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain. Or they may be fascinated by lights or spinning objects.


I feel like I have some sensory sensitivity, but either it's subtle or it's something I've completely made up because a part of me likes the idea of being unusually sensitive (even though I'm actually not).

Have I convinced you yet, random psychology woman whose name I don't remember and who'll never read this and who was just trying to do her job??



∞ Here ∞ is an article thing by someone who seems to have Asperger's himself, explaining the 'top 10 signs' that would suggest that you have it, in a way that I imagine are either partly or directly drawn from his direct experience. They seem so ridiculous to me that I wonder whether they're at least partly a joke, but it's hard to say, because he might not have meant them as such at all. I've definitely known people who were genuinely like that. He mentions in his brief bio at the bottom that he was diagnosed with 'mild' Asperger's at age 30, which is interesting. He's also called Englebert, which I think is an amusingly appropriate name for someone odd. Like Archibald or Cuthbert. Can you imagine a Chadly hunk - swooning women throwing themselves at his sculpted chest - called Cuthbert? I suppose they go mad for Benedict Cumberbatch though...

I've already talked about this for a billion years, so I won't go through everything in that. The mind expressed in them seems so alien to me though; I wonder whether other people with Asperger's would see it as completely okay and normal, and the 'Girl' in those scenarios as the alien?



There's more I was going to say about this, but I wrote that hours ago and I'm tired and have mostly got it out of my system already so I won't bother.

I don't think anything will come of this psychological assessment though. She was talking about referring me to therapy groups, doing CBT, things like that; I suppose it's her job to attempt to 'fix' me in that way. I won't actively resist any of that if it comes up, but I've tried all that in the past and it all just feels so artificial, or like it's not even addressing the primary problems that I face.

My biggest issues are finding places and people where and around whom I feel I belong. It's not as if I'm looking longingly at the cool kids, fantasising how I could be normal and fit in with them, if only I knew how! If I go to some meetup group and it's full of middle-aged-or-older housewives who talk about their husbands and children, I'm not going to get anything worthwhile out of talking with them just for the sake of talking to another person. There've been a handful of people I've truly connected with, but I tend to become neurotically obsessive about it (because they're so rare!) in a way that causes us both a whole bunch of trauma.

So these days, I'm just coming to terms with the reality that I'll be spending my life alone, and I actually don't mind that anymore. The idea of spending all my time making things, without anyone judging me, without any obligations like seeing extended family or taking someone out or any of that... It sounds quite nice to me; a big change from how it felt a year ago. If I could earn the money to fund that, that'd be okay, I think. So I really need to focus on this game...



Speaking of which, briefly: I mentioned reading through my old posts, and it's embarrassing how long I've been saying that Sindrel Song is 'almost done!!'. Since like the week I started it! It's basically a joke at this point. I feel it really, genuinely, is almost done, but I didn't get anything done all weekend due to falling into a terrible depression (which I also already mentioned). Getting out today, just to go to the hospital, seems to have done me a lot of good, so hopefully I'll get back on track tomorrow and be done by the end of the week. But we'll see!!!

? COMMENTS