To challenge a culture

Most of the time, I am too late in my readings and responses to be an "active part" of the autism blogging community. Neither does it help that my blog is most often read by people who search Google for keywords like "asperger no life" and "asperger never marry". Fact.

But today I came over an interesting blog entry, made by abfh, which mentions a comment Amanda made where she explain the use of the word meltdown in the autistic community. To prove a point, she quotes part of her comment;

I would never attempt to join a culture and then say within a few years of joining it, that the culture's longstanding words are inappropriate and just now being defined, just because the wider community doesn't know them yet.

I can agree to what Amanda is saying, but at the same time, I think it can be dangerous for any culture or group of people to never be challenged on their use of words, their paradigms, and such. If we never challenge what is already set in stone, there can be no evolution and no future for the culture. And to provide an image for this as I believe many people know, who's to say there is no black swan?

Amanda makes many very good arguments as to why it should be called a 'meltdown'. The argument that stands out to me is one she used in another comment, where she says that the use of these words ('meltdown', 'shutdown') came about because one did not want to use the clinical words used by professionals.

That, to me, says a lot. A culture will always have its own words. Some people call this slang. That the autistic community, not just online, use their own words for the feelings and situations, means that there is indeed a community, and a vibrant one at that. The argument over these words and the connotations they bring about is also a healthy sign. What, perhaps, is not as healthy, is when people say others are not as involved in the culture as others, and thus cannot voice their opinion.

It's not about the validity of the online autistic community, as abhf says, because we know the autistic online (and offline) community to be very valid. Not only just by what it can achieve when it comes to lobbying and "getting things done", but because it is a community, a culture, that cares greatly about itself and its members.

As a newcomer here, myself, I would like to think that I am just as welcome as a person who has known about her autism for 10 years, or, her entire life. Abhf made a parallel to the gay/LGBT community, which has faced criticism due to conformism, and thus I find his parallel to be a good one. Especially is the case here is that one has to conform into the culture adopted by many, rejected by a few.

The choice to use the Rainbow Infinity Symbol as a symbol of "pro-autism", and not the puzzle piece, has been an active choice in the autistic community. As the symbol represent, among other things, the spectrum of autism through the different colors (the differences in our symptoms), it can also represents the difference in our opinion about our culture. As I have previously mentioned, all cultures change. All paradigms are challenged. The Rainbow Infinity Symbol shows this never-ending cycle.

Asperger's Syndrome in Adults - link

I know I keep sharing links with you all, but I happen to stumble upon several good sites or blogs these days. I hope you don't mind.

This has been lying in my RSS-feeder for some time now. My initial thoughts were to comment some of the stuff it mentions, like - symptoms in adults. But, I assume such an entry would be me repeating my symptoms, and I don't think that is necessary?

However, I do find it refreshing when someone writes about autism in adults, and I'm glad someone does it. It's hard finding good information on that subject, and even more so on autistic women.

I know I've written about this before, but for me it's a very important point that cannot be discussed often enough. It's one of those topics that makes a real distinction be known between parents of autistic children and autistic children themselves. It's the topic of 'name-giving', 'definition' and so on.

On an online forum there has been several debates, finally emerging into a thread of its own whether or not one should say 'person with autism' or 'autistic'. It seems to be that the parents are all for the first, while the afflicted themselves prefer the latter.

Instead of trying to arrange the thoughts in my heads, I'd like to refer to the words of Jim Sinclair, which I was just recently made aware of through Coming out Asperger - Diagnosis, Disclosure and Self-Confidence (and if you haven't already, you should pick up a copy). At the same time, it makes me happy to see that he uses the argumentative style as I've done previously, in "Thoughts on words" and online elsewhere, where I've argued that I am, for instance, "a photographer" and not simply "someone who takes pictures".

Meeting others on the spectrum

I think one of the most common 'fears' of those self-diagnosed, or "self-dx'ed" if you will, is the fear of thinking you're just imagining this, you're not really autistic, and it's just something you've made up to cover up something else. It certainly has been for me, although the semi-official diagnosis on Feb. 11, 2008 has made me feel more certain that I'm an indeed right.

Others have said it before me, and I'll say it here - meeting others on the spectrum, either with or without an official diagnosis might help you figure out in which camp you belong.

This spring I was fortunate enough to find a group of parents of kids recently diagnosed as Aspergic. Originally consisting of parents from a nearby municipality, I was accepted to a meeting as the first autistic person (although the parents often have traits themselves). After being very nervous in the car, I was happy to learn that these people were all great, and they made me feel very welcome and needed - they asked me questions and were genuinely interested (as far as I can tell). So far I've met these people thrice - two times in one of the homes, once at a café, with only two of them.

I've also been a part of two meetings consisting of auties only. One should think that in an area of a mere 181 000 people it'd be "hard" finding others on the spectrum. So far I have a confirmed number of 7, and I suspect two students on campus that I've run into (who seem clearly autistic), a professor who can be nothing but, and a few more.

Meeting these people has proven a very valid point, one that I cannot stress enough; each autistic is as different from each other as each NT is different from every other NT. What we have in common is certain traits. It's no use trying to compare us, and say that one cannot be autistic because she is not interested in the same things as he is. The traits that makes us autistic varies in severity, making us different and faceted people. It has also showed me that I have found my camp, no matter how many times I'll have to endure comments like "you're not autistic - you can talk!" and "you seem so outgoing!".

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.

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.

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.

Thoughts on Words

As I watched Oprah yesterday (the episode with Jenny McCarthy and how her son was magically "healed" of his autism*), I couldn't help but notice how she worded her replies/monologues. I'm not going to address all of it, but what struck me is the difference between her and myself.

She said it was important to say child with autism, not autistic, because the autism isn't the only thing describing the child. That, of course, is true. However... We have no problem saying that someone is, or example, a boy - you don't say child with the gender/sex (that's a whole different discussion) boy.

As an autistic, I define myself as such, but I also define myself as so much more. It's not the only thing about me, which Ms McCarthy so condescendingly suggested it would be with such a description. To me, it sounds more like she's the one who can't see "beyond the autism" and therefore have to say with autism to remind herself that her son is something more.

* It finally aired on Norwegian television last night (I don't watch Oprah, so I don't know if it has been on before), and I capped it for a few autistics and parents of autistics at an online board. Let me know if you haven't seen it yet and would like to.

Addendum: If you remove every label that sum up traits, etc, in one word, like autism -> with autism, aren't we basically removing every single part of us from our cores? If we stop using definitions like that and base our knowledge of ourselves thing we do and things we say instead of accepting them as parts of us?

The autism, however small it may be, is, and have always been a great part of my life (even when I didn't know about it). I can't just diminish that by calling it something else. Just as I am autistic, I'm a girl (at times), a woman (at times), I'm currently a student (not someone who only study) and a photographer and many, many other things.

Professionals being vague as to not frighten parents?

I'm now doing something I said I wouldn't. I'm about to make a post where I'll try to philosophize and speculate on autism issues. Please note that I am not a parent. I have no idea what it's like to love someone, a child, as a parent, so I don't know how scary it can be (and most likely is) to have a child diagnosed with autism. Please also remember that I sometimes have problems putting myself in other people's situation.

Since I've started reading about autism (which has become my new 'special interest'), I've been made aware several times that some people say that their child has, for instance "Asperger's with delayed speech development". This puzzles me, because everything I've read points to something else. Asperger's is a form of high-functioning autism (from now on referred to as HFA), yes, but... You can have HFA without having Asperger's?

This is the area that probably causes the greatest controversy. Both ICD10 and DSM IV state that for a diagnosis of Asperger syndrome then spoken language development must be normal. Children with high functioning autism may have had significant language delay. However, Asperger's original descriptions of the condition stated that speech and language peculiarities are a key feature of Asperger syndrome. Often diagnoses of Asperger syndrome are made when a child is quite old and they or their parents may have difficulty remembering the details of their language development. (Source)

I'm wondering if perhaps, since so many parents say that their child has Asperger's, but at the same time that there has been a significant language delay, it's because the prospect of having an autistic child is so terrifying? Is it perhaps that, because you avoid the 'autism' term by saying "Asperger's Syndrome", you're soothing the parents, telling them "It'll be alright"?
(Page discussing the prognosis of individuals with Asperger's) If someone can provide some insight on this, that'd make me very happy.