The chameleon

Another trip to the university library bore fruits. I came home with a bag full of book on autism that I haven't seen there before. They're very popular, it seems.

One in th batch is Donna William's Autism - An inside-out approach. I haven't gotten very much beyond the foreword, yet, but I do hope I'll enjoy it. I particularly want to bring up a paragraph that reminds me so of myself:

By my teenage years, I began to be too aware of the feeling of being alien. Unable to have even consistently shared true self-expression or real emotion with anyone, I grasped the absolutely emptiness of what the world held for me. My answer to this was to follow and mimic anybody who would take me along for the ride and to move through life as fast as possible do I didn't ave to stop to feel how bad and out of control it all felt. (Williams , 1996: 3, own emphasis)

As I've already mentioned, this hit close to home for me. Growing up, I was a chameleon of sorts. My AS "stopped" me from developing my own sense of being and I was continuously mimicking other people's meanings, sense of fashion and way to express themselves. I believe this is called social echolalia (which is also such a great word to say out loud!). It's not that I don't have my own personality, it's just that I have a tendency to take after whoever I'm around. I still do this. And I don't know how to not do it.

The problem with this is that I don't know how to really be me, because I cannot stop this form of behavior. The other problem is that there are stock phrases and expressions that are so 'alien' to me that I don't know how to use them, and thus, I am often perceived as impolite. The mere thought of saying hello when you meet someone on the street is uncomfortable, and I'd rather not be in a situation where I have to compliment anyone; I don't know how to best do it.

Not just

A, but not-just-A.

Woman, but not just a woman.

Autistic, but not just autistic.

But-just-Autistic when it comes to activism.

The colors between the lines

I've only "known" for the last 4 months that I'm somewhere along the autistic spectrum (Asperger's seems to fit the best), and it's only been a little over a month since a professional agreed with me, but during that time I have been very busy "connecting the dots", as you'd say between my behavior (during childhood and now) and my autism. It's not a conscious action, but suddenly I remember things I've done, or, thing people have said I did and see a clear connection at the same time. It's eerie, in a way.

One of the latest two lines between the dots is the mall-meltdown incident I mentioned in the previous post.

The other one is more connected to symptoms of autism; apparently inflexible adherence to specific, nonfunctional routines or rituals (DSM-IV Diagnostic Criteria for 299.80 Asperger's Disorder). My mom was, when I was around 6 months old, driving, with me, to the city. The freeway we used has a tunnel. One opening for north-bound traffic, and one for the south-bound traffic. But, this day, there was some maintenance work being done, and one of the directions was closed off, and the traffic was directed into the other opening. I went ballistic. Screamed and kicked and flapped. I'm not saying "normal" kids won't, or can't, respond the same way, but it got me wondering...

Meltdowns, or the lack of

Of course, I cannot for the life of me remember where I read it, but it was yesterday or the day before that I came across a blog entry (I think) where this autistic person said that (s)he had been able to refrain from public meltdowns. Anyone know which one I'm talking about?

As you might or might now know,

A meltdown is condition where the Aspie temporarily loses control due to emotional responses to environmental factors.

It generally appears that the aspie has lost control over a single and specific issue however this is very rarely the case. Usually, the problem is the cumulation of a number of irritations which could span a fairly long period of time, particularly given the strong long-term memory facilities of the aspie.

[...]

The meltdown appears to most people as a tantrum or dummy spit. There are marked differences between adults and children.

Children tend to flop onto the ground and shout, scream or cry. Quite often, they will display violent behaviour such as hitting or kicking.

(source)

I don't recall having had many meltdowns during my childhood. If I did, they were never called meltdowns. I was just a "bad girl who didn't know how to behave". The story that often comes up is that of the 3 year old me at the mall with my mom, "throwing a complete tantrum" so bad my mom had to pick me up and carry me under her arm out of the mall.

Several people describe how their autistic kids can be such angels when they're "in public", yet act as monsters behind closed doors. This was true for me as well, and is something I still do from time to time. I can be nice, civil and polite during "office hours", and then unleash everything once I get home. I'm not easy to live with, I know, and this is something I'm working on. I distincively remember being embarrassed them few time I "lost it", and I think therefore I started to restrict it to when I was home.

Do you think autistics are able to "control themselves" from melting down in public? Are there any gender-differences when it comes to meltdowns? The source I've quoted mentions that autistic adults often get depressed (and 'shut down') instead of melt down. I think this is particularly true for women (not saying it doesn't happen to men). Autistic or not, most "high-functioning" autistics become aware of the effect they have on others on one level or the other some time and begin to "adjust" their behavior. I'm not saying everyone does this, but I know I've done it, and I assume this is very true for the female aspie.

Let's face it. Girls are brought up differently, either the parents admit to it or not. That's just the way it is. Even thought my parents at least tried to give both of us a "gender-less" upbringing, the society we live in made it impossible. If our parents didn't encourage us to be free of gender-presumptions, the school sure as hell didn't. I remember being told that girls should be so and so (nice, polite) and boys could do whatever they wanted. And this is the problem with autism diagnostics today. Because boys are expected to be 'free', it's more "okay" for a boy to have ADHD/autism/whatever, but girls are so played down that most of them tone down their overall behavior + autism don't manifest itself the same way in females. This is a never-ending argument, so I'll just leave it as this; food for thought.

Parallels

I just got out of a lecture on feminist theory 15 minutes ago and am currently sitting in a study hall at the university I attend. The class is every Thursday, and it's the one class I'm really looking forward to each week. Feminist theory and gender research is not a major obsession, but a long-lasting one and I'm happy the university is finally offering at least something like "this", small as it is.

We've been dealing with feminists like de Beauvoir, Firestone, Irigaray, Butler and Wittig (and probably a few more as well so far), having a look at their ideologies, theories and opinions. Of course, they all assume the position that females are oppressed by males, but there is more than that. How is gender made? What mattes when it comes to your individual representation of yourself as a male or a female? We're also writing a paper on this, which has to be handed in tonight (don't remind me).

Today we had a good hard look at our own prejudice. We were faced with several photos and had to classify whether or not the subject was female or male. Why did we think either way? We had to make lists as to why we had these assumptions about the people; characteristics as we saw them as well as the feelings the picture evokes. At the end, the lecture was about Wittig and Butler and how their theories deal with how we made ourselves known as genders. This struck a somewhat familiar chord.

Butler says that gender is biologically conditioned, but you adapt to the cultural (sociological) classification for the sex you are born with (biological sex). To these sociological gender, there are certain "expectations" you have to live up to. let's say you're a woman. You are expected to dress as "we" think women should dress and hold "feminine" qualities as be a good cook (even though the best chefs in the world are men), want and desire children and to become a mother. Of course, Butler goes even further and says that lesbian women are unable to live up to the expectations met in society and that one should, in some way, resolve sex as it's actually culturally defines after all - how we perceive sex depends on our culture. Maybe that isn't as relevant here... Or is it?

Can't a parallel be drawn to aspies in the NT world here? You see - as aspie as though we may be, we are still "expected" to act NT, to be NT. We as humans are seen as the same as NTs. We are to be the same. But, some of us (be it aspie, HFA or "low-functioning") can't live up to how NT-society works. There you go. That's the parallel. That puny paragraph. That's all I have to say after you've read all this.

I'm soooo tempted to write such a comparison in my paper, and thus out myself as an autistic.

Broken promises

You know what annoy me? That people cannot keep their appointment. I know it's a classical AS-trait to be irritated, annoyed, furious even, but that doesn't really do me any good when I having these feelings.

I just wish people would start realizing that there's someone else beside them in this world and when you do know that someone has AS, please consider this as you make and break appointments.

I'm not trying to say that you always have to keep the aspies in your life happy, but something as basic as keeping appointments unless something drastic happens is a small thing for you, but a great one for us. I know I have a weekly planner and I know how much I hate it when my carefully planned (and written) to do/appointment-lists are disturbed.

Just had to let off some steam.

Household chores

I was always the lazy kid. I never cleaned my room. I've had piles upon piles of stuff lying on the floor because I "simply" cannot see where it all should go.

I never knew this could be connected with my now-apparent autism. Zosia Zaks writes in her book Life and Love: Positive Strategies for Autistic Adults that this is normal for some autistics;

While not everyone on the autism spectrum has trouble getting and staying organized, many of us have a tough time creating a comfortable place to live. (p. 27)

She continues:

Some autistic people have difficulty managing all the tasks that go into maintaining a home. What has to be done first? Where do you begin?
[...]
Autistic people may also have trouble sorting different objects in the home. For example, we may not realize that the enormous pile of "stuff" on the bed can be broken down into separate piles of clothes, books, papers, and trash, and therefore managed more easily. It may be difficult to sort and control things that arrive in the home, with newspapers winding up all over the place and packages left by the door for weeks. It may not be obvious where to store items either.
[...]
Well-meaning non-autistic friends or relatives can inadvertently put pressure on us or assume we are lazy, in fact, we may have be having serious trouble caring for our living quarters, futher fueling a sense of frustration. (p. 28-29)

All this is true for me. I seem incapable of sorting my stuff and as a result, there are books piled on the floor, DVDs by the computer screen (even though we have a perfectly funtioning DVD-shelf). Things pile up. Easily.

I've referred to myself as well-functioning in the past. I still think I am. To a certain point. The truth of the matter is that I, as said previously, function very well "in my own environment". This includes, but is not limited to, that I have a wonderful husband who take on a lot of chores (and leaves me with a very guilty conscience) as well as a mother who feeds me while he's away.

Still, it's not all that easy. Some say that what differ most autistics from those with Asperger's is that aspies have a "want" for a social life. We want relationships. We want friends. But it's kinda hard to invite someone over when your house looks like something out of movie dealing with what happens after the zombie-invasion and your house could be a set.

The Question

The psychologist asked me if I thought I would have had an easier life if the diagnosis had been made earlier, in my childhood.

Yes: I would have had the right to get help for living with th condition.

No: I would easily have been labeled and maybe not "expected" to make it as far as I've done.

I'm having a hard time choose. I didn't give him a satisfactory answer.

Thet extra little second

It's peculiar how much I've grown accustomed to the AS. Whenever I've read the symptoms and how aspies, in social situations and such, takes a second or so to respond (and therefore may have problems with conversations), I haven't been sure if I do that. Same with the symptom of having to have things "spelled out". But, yesterday I "caught" my brain in doing that logical deduction as to "what I was to understand". It was just a split second where I didn't know what the other person wanted of me until she made a comment that made me able of deducting my way to the answer and behave appropriately.

It's not something I've been aware of before figuring out the AS, but as with so may others who are diagnosed when they are adults, I've started self-analyzing, maybe a bit excessively. Either way, it's the first time I've been aware of how my brain process verbal commands where some information is missing.

In between

After I briefly discussed my high vs. low-functioning moments last week, I want to take a minute to elaborate a bit more on that subject.

I have never, to the better of my knowledge, met any other autistics. There is a professor at my uni who seem very autistic (gait, how he seems to have planned every single moment of the lecture, his lack of eye contact, how he sometimes doesn't get it when the students make jokes) plus another student who someone said has Asperger's. I cannot confirm either, and I don't fit either of them, if that's a good way of putting it.

Due to the extensive criteria for Aspergers/HFA and the diversity of autistics, I have yet to find someone who I can really relate to. The stereotypical Aspie doesn't fit me; everyone seems to think that Aspies are geniuses who are brilliant when it comes to numbers, are unable to carry a conversation, will never marry or even have a girlfriend (note the word) and behaves oddly. Judging from the number that 1 in 150 is somewhere on the Spectrum, I don't think this is the case at all. Hell, I know that's not the case. Aspies are just as diverse as normal people, or NTs as I prefer to call them.

Let's take a look at the stereotypical aspie I just described and compare it to me;

1. I am definitely not brilliant with numbers. I was good at maths during elementary school, but struggled with it all through high school. Today I'm terrified of numbers (due to a sense of failing, I don't know) and can barely do the shopping by going by very rough estimates.
   
2. I can indeed carry a conversation. However, I struggle to do so in a new, social situation and I tend to focus it back on me (which I've heard is a typical aspie trait). There's also the odd pauses at times where I have to look for unscripted words.
3. Will never marry or even have a girlfriend. Although I have no objection with homosexuals/bisexuals, I've used this sentence to prove yet another point. Most people think that only boys (yes, boys, not men) can be autistic. The current number is that there is 1 girls diagnosed for each 4 boys, but my opinion is that more boys than girls are diagnosed due to Hans Asperger doing research on boys only as well as that the diagnosis criteria are written to suit males. Girls and women are under-and undiagnosed due to a lack of knowledge about how autism affects us. Further, it's not true that autistics can't find and keep a partner. I've read and talked with several, both male and female autistics, that have been married and have kids. I'm one. But without the kids.
4. It seems that some people think that you can spot an aspie by the way he walks and acts and talks. I'm not saying you can't, but it's a too big an assumption to ignore. I haven't come out to a lot of people, but the first person I came out to who have only known me for a very limited time had a reaction saying this is not the came. She was surprised, maybe even shocked, to learn of my aspieness.

   But! You're so outgoing!

The gist of this post has yet to come.

My point is that there are so many different ways to be autistic. I'm one. You might be another. And neither of us are just as another. However comforting this may be, it also makes me doubt myself at times because I don't see myself in the autistics I see in documentaries or in most YouTube-videos (there are always exceptions).

The world seems to be too busy looking for the savants or the "low-functioning" to notice the "normal ones" that hide in their midsts. I don't think I talk for myself only when I say this, but it's kinda lonely. After first being defined as different, not normal, etc, it's hard not feeling that you fit in with the one's you're supposed to fit in with, either. Just as any other person I'm searching for someone that's like me, that can validate me as an autistic person.