as if inside our skulls, instead of the brain, we felt a fish, floating, attracted by the Moon.

Friday, June 11, 2010

Autism: the battle of official vs. unofficial diagnoses, and other such things

Disclaimer: I hate talking about this so plainly, because of reasons I will address further down, but I feel like I should. And this is a blog, so even if people have reactions I don't like, I don't have to deal with them in person. Yay internet.

As many people already know, I have Asperger's syndrome (or, as I like to call it, ass burgers). The latest edition of the DSM, coming out in 2013, I believe, is going to remove Asperger's as a seperate condition, and lump it together with autism. I don't really have as much of a problem with this as a lot of other people in the autistic community do. I guess it's because I'm not offended by the thought of being autistic, because Asperger's is, after all, a form of autism. Also, I think Hans Asperger had a really unfortunate name. Really, the word Asperger's just screams "retard."
So, depending on which DSM you're following, I either have Asperger's or I have high functioning autism. Take your pick.

I don't have an official diagnosis. I've been to two therapists as well as my primary care physician, none of whom were qualified to diagnose autism. Very frustrating.
Though I have no doubt that I am autistic. I know it is common knowledge that autism is a spectrum disorder, but I don't think the layman really understands what that means. I'll admit that even I was always under the impression that autism was a debilitating disease, made famous by its drooling, blank eyed poster children who don't speak until they're six years old. Asperger's has an even worse rap; the only famous aspergians (by famous I mean famous outside of the autistic community) are people like Chris W Chandler (who, personally, I think is lower functioning than your average aspie). Where autism means a silent, creepy child who never makes a sound other than the all-too-common unprovoked temper tantrum, Asperger's means a crazy permanent-virgin who lives in his mother's basement and collects Star Wars action figures.
Autism is much more than both of those definitions.

I think that "spectrum" doesn't even fully explain how autism works, though it is easier to explain. The simplest way of explaining the spectrum is that, on the far end you have the drooling, child-like 16 year old who can't be touched without screaming. On the opposite end you have the awkward dork who watches way too much Doctor Who and tries to make friends by spouting Doctor Who references.
When I say that "spectrum" is not accurate, I mean that what would be more accurate is a spider diagram. If you don't know what a spider diagram is, here is my diagram result for the Aspie-quiz (lame title, but it's pretty agreed upon to be one of the better online quizzes).
A spider diagram is pretty intuitive, so I won't explain how to read it. But when I say that autism is not a spectrum, and is instead a spider diagram, what I mean is that everyone has different areas in which they are low and high functioning.

For example, I'm much better than Jack at mimicking voice tone, inflection and body language, so I tend to do a better job of "passing for normal." However, I'm much worse on the whole "black and white thinking" aspect of autism. When someone is mad, they must be mad at me. When someone is upset with me, they must hate me; there is no in between emotion, everyone either likes me or hates me. Etc, etc.

There are plenty of people out there who are clinically, "more autistic" than I am, but are better at some things. It's not as though a person is, say, in the 80th percentile for making friends, so they must be in the 80th percentile for every other symptom of autism. I've talked to adults with autism who are seemingly completely "normal" except for the fact that every few hours they take a break to run to the bathroom and scream for a few minutes. I could go on forever, in case you can't tell.

What really bothers me is that the first thing everyone always asks me is why I want a diagnosis. Usually it'll be somewhere along the lines of, "Do you need it for court or something? Or for special needs in school?" No. I don't "need" a diagnosis.
I've tried replying, "If it were you, wouldn't you want to know?" but it never has the intended effect. Everyone seems to think that self diagnosis is enough, and I should be confident in my abilities to know myself.
I am confident. I know I am on the spectrum, but the thing is, I can't tell people I have Asperger's. I could never write a book about it, or be a public speaker for a college or committee, or have any sort of authority behind my claim. People will forever think that I'm a hypochondriac who's using autism as an "excuse" for who knows what, unless of course I can get a goddamn doctor to say it for me.

For example, here is the list of criteria for Asperger's Syndrome, according to the DSM IV:

A.Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.

(Anyone who's known me for longer than two or three years will understand when I say that, before I was taught how to pose my body and be aware of my face, this was me to a tee. When talking with someone, I never moved my hands at all, or any of my body for that matter. I sat hunched over with my hands in my lap, fidgeting, not looking at anyone, and keeping up a monologue instead of a conversation with little to no vocal inflection. I still am like this, unless of course I feel the need to make a good impression on someone, or if I'm trying to seem "normal.")
(2) failure to develop peer relationships appropriate to developmental level.
(I remember in Kindergarten, there was a girl in my class I didn't get along with. The teacher called our moms and told them to make us be friends, so my mom said I had to be nice to her. I had no idea how to be nice to someone, so I brought her presents. She didn't react well, probably because the presents were things like a really round acorn I found at the bus stop that I thought was cool. I still have a hard time making friends. There's a sort of flow and rhythm to normal conversation that I can observe, but am still unable to imitate.)
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
(I still don't understand this. I don't think I've ever met someone with Asperger's who hasn't been aching to show off their newest whatchamacall it.)
(4) lack of social or emotional reciprocity
(I've gotten pretty good at keeping this inside, so this is something I usually only feel in my head, unless I'm tired. It's hard to explain, so I'll provide the example that when somebody's grandma dies, I honestly don't give a shit. If it's a close friend, I care, but not because of the grandma, because my friend who I care about is sad. The not caring is sometimes bad because I'll forget about the dead grandma and a month later make some really awkward dead-grandma joke that will offend everyone in the room.)

B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.
(Anyone who knew me in elementary school: animals, dragons and wolves should ring a bell. Right now it's physiology, pathology and death. It's a big misconception that autistic people have only one obsession at a time. No one dedicates their life to just one thing forever, it's phases.)
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals.
(This is why I hate the shower. If I take a shower, there's a long to-do list that goes with it. If I don't have more than 20 minutes, I usually just won't take a shower, because I can't deal with not being able to do the rest of my list. This is also why I don't like spontaneous plans, unless it's a spontaneous plan I've done before [ie: swimming at puffers out of the blue is ok, because I've done it before. Hopping the train to NYC would be terrifying]. This is also why I don't like unexpected guests.)
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(Thankfully, I stopped doing this in public in about 6th grade. If you knew me in elementary school, do you remember how I would wave my fingers in front of my face? Yeah. Awkward.)
(4) persistent preoccupation with parts of objects
(An example of something I thought was normal. Do other people really not love gears and bolts and pieces of machinery? How could you not! AH!)

C.The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D.There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
(This is the main difference between Asperger's and autism. Autism is marked by a delay in speech. Though, again, some aspies have delayed speech, and some with autism are early talkers. Usually they say either early talking or late talking can both be signs of autism.)

E.There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
(It fascinates me that schizotypical disorder is often misdiagnosed as autism or Asperger's. They're very similar, except for a few differences. The most obvious difference, in my opinion at least, is that where autism is marked by a very logical, scientific thought process, to the point of often squashing religious beliefs, schizotypical disorder is marked by the opposite. "Magical thinking," says the DSM. These are the people who see a coincidence and believe it to have meaning in their lives, people who sense changes in energy waves, etc etc. That sort of thing.)

I hate that a doctor needs to agree with a person to make a diagnosis official. I suppose I understand why that's true; it's very important. But it's frustrating. I'm somewhat of an outsider in the autistic community, as there's a large group who believe that those who are self diagnosed "aren't really autistic."
These, of course, are the people who were diagnosed as children because of their watchful parents. People like me, with parents who say, "Oh, yep, my child is very textbook autistic. Oh well, it's cute," never get diagnosed.

Getting a diagnosis is not about... well, whatever the hell it is that people seem to think it's about... it's about knowing for certain, and confirmation. If, for your whole life, you felt something was wrong with you, and people constantly made fun of you because of this mysterious something-wrong, and one day you learn that there's a reason you are like this, wouldn't you want to know? Because if there's a reason, it means there's not something wrong with you. You're not just as normal as every body else, and for some reason you're broken, you just can't do it. It's not your fault.
I remember what was always hardest for me to deal with was the thought that I was normal. I have the same brain as everybody else, the same potential, so why can't I explain myself? Why can't I talk to people? Why do I act like this? I'm not supposed to be this way, why can't I fix it?
Learning that there's no way to fix it, that it's not something I'm doing wrong, it's just the way I am, was unbelievably wonderful. I'd gone through so many break downs and so much insanity because I thought I was just doing something wrong.
This doesn't mean autism is an excuse to be offensive. There's a very big difference between something fixable, and something that can be dealt with. I'd spent my whole life trying to fix myself, when this isn't something that can be fixed. I can compensate for it, but I shouldn't feel bad when I can't change who I am inside.

If you were in a position like this, wouldn't you want someone to agree with you, to tell you you're not crazy?
And yet no one seems to understand why I want a diagnosis so badly.


(ps) Day 15 — A fanfic

What the fuck. I don't know.
Once upon a time Ron and Hermione had sex and got married, in that order. Harry died in a tragic car accident. No one cared very much.
-the end-


  1. i really liked how you explained all of this and covered the aspects of stereotypes, the autistic community, and the issues that go along with diagnosis as well as your reason why you would want to know for yourself.

    in terms of diagnosis i do find it strangely comforting/freeing to be able to know that it's not a character flaw or "something wrong", it's just part of who you are and that there are many others out there who share similar experiences even despite having to appear a certain way out in the world.

    i won't go on for too much longer but kudos to you! i learned something new today. many things. best of luck to you in finding a qualified doctor to press this issue with (unfortunately you might end up running to "well...maybe...sure...i guess" answers, which always aren't the most helpful coming from professionals when there is a clearly something going on).

    hope all is well with everything, your class, jack, being back at your house, etc. i'm sure i'll run into you soon :)


  2. "F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."

    Shit, it all makes sense. I have the slightest case of schitzophrenia --it's more of the case that my brain works similarly to someone with schitzophrenia (ex. anti-psychotics have always worked better than anti-depressants, graphic nightmares, etc). Also, I slur my words a lot/what comes out of my mouth is not what I'd planned, though I doubt that has anything to do with anything.

    If it helps any; I described you and your ideas and Donna says it's definitely possible (she is qualified to diagnose certain things, though autism/aspergers isn't one of them)

    and yes, I wish you lots of luck

  3. Actually, it's possible. That sort of thing always presents differently than people would expect. Schizophrenia is also a spectrum/spider diagram type deal, and people often forget that...


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