cinema_babe: (A Dr Who Xmas)
[personal profile] cinema_babe
Before you even begin reading this, stop. Below are my feelings, belies and attitudes about "being on the autism spectrum". Some of it is not soft and fuzzy and will irk people. Big surprise.

If you get easily upset when I get blunt, you might do best to skip this post.

When last we left our intrepid heroine, she had just been told that she was on the autism spectrum (apparently, Asberger's Syndrome is no longer used, you're just "on the spectrum")

This did not make me happy. At all.

The majority of people I have encountered who claim to be “on the spectrum” seemed to use it as an excuse to be an asshole. A test you find on the Internet or some random dude (or dudettte) telling you you have Asberger's is not a diagnosis, it's validation that mean, lazy people cling to as an excuse for their bad behavior. The few people who truly are on the spectrum get smeared by the unwashed hoards who abuse the diagnosis for their own purposes.

Everyone in Psych Services started referring me to books and articles and web sites and support groups, and every resource they had to make me feel better about my “diagnosis”.

One small problem: I never felt like this diagnosis was right.

The objective part of my brain could see very clearly that the data was right but the subjective part of my brain could not reconcile my personal life experience and feelings with the data. Subjective be damned, I had the scientific data, my test scores. Overlaid with my oral history, they convinced a highly trained psychologist that I was autistic so it had to be true. Right? So all of the psych professionals are talking to me in quiet, calm voices about how I just need to find the voice on the autism spectrum that spoke to me.

So I (re)read Grandin and it didn't fit and they said "her diagnosis is much more severe than yours", read Robison instead.
I read Robison and it didn't fit and they said, "he's a man, his life experience is different, read Willey.
So I read Willey and *that* didn't fit and they said, "well, she's a white woman so her life experience is different"

And they referred me to more books and sent me out to you tube and into online communities where I encountered all types of people reveling in their victimhood. There was the loony vlogger who insisted that if you thought you had Asberger's but the doctors say you don't, get other opinions until you find one who gives you that diagnosis. And the blogger who said she was very sad and weepy because (according to her) Ehlees-Danlos is a common co-condition for people with Asberger's but for 5 years doctors have been telling her she doesn't have E-D. OK, it's a rare disease maybe the docs are wrong. However, her crusade for an E-D diagnosis was based pretty much on a (a)shaky Asberger's diagnosis (she was never fully evaluated but a psychiatrist had told her that he though she might be on the spectrum) (b)People always telling her she looks so young for her age and soft, young skin equals E-D, and (c)she sprained or dislocated an ankle twice. Twice in her entire life. Having read what people who live with E-D go through, that pot was just disgusting.

But if this diagnosis was right, this is my fucking peer group. Great. The more I tried to acclimate myself to this the "wronger" it felt.

I spent much of this summer sad and despondent; I told my therapist that if this is who I am, what I am some redneck racist may as well put a bullet in my head right now because this was not a life I wanted to live*. I told him that "Depressed and Anxious" is fixable with therapy and maybe medication but autistic is defective. It was no longer about strategizing how I was learn to color within the lines but how all of the helpful people at psych services would get the university to bend the lines for me.

This was not acceptable.

Then I figured it out: The pieces all make sense but the intentions behind the actions didn't. I shared this with my therapist and he put it together with something he read in my records. That I had read a book on children of alcoholics and even though there was no alcoholism in my family, the chaotic atmosphere made those stories were all too familiar to me.

After a couple of weeks he said told me that prolonged, PTSD can present in very similar manner to Asberger's but that he had to do some additional research into it. He came back a week later and said that he was convinced that I *was not* on the autism spectrum, I just never learned very good social skills and have a butt load of malapadtive ways of dealing with life as a result of chronic PTSD from a string of events from my childhood and youth.

OK, fixing this is still not easy because it means going back through stuff I didn't go back through before because I edge towards psychosis when I do. Oh joy. But it also means that he's going to get the bullshit diagnosis (which apparently not all of the diagnostic team was on board with the start with) swapped out for the more accurate one. I was right, I am broken, not defective.

The scary thing is that if I didn't know myself so well, was more easily persuaded and followed authority without question, sorta like my mother, this story could have ended with me just giving up on my life because of what I couldn't do. This episode didn't do a thing to restore my confidence Asberger's diagnoses, if anything, it's made me even more leery of them.


*Note to self: never make a statement like that to a shrink. They will try to make you sign a contract promising not to hurt your self. I'm not a 21 year old filled with cutting angst, I'm a 40something year old cockroach, I have a tendency to survive shit I should not.

Date: 2014-07-23 08:26 am (UTC)
From: [identity profile] tisiphone.livejournal.com
As a person who also has some weird social quirks and some interaction styles that are probably wrong, I think I would probably be similarly furious and disbelieving if offered such a diagnosis. Good for you for fighting it.

Date: 2014-07-23 10:54 am (UTC)
From: [identity profile] mama-hogswatch.livejournal.com
Asperger's syndrome is a very specific diagnosis. It gets thrown around a great deal inappropriately by people who don't' know what the fuck they're talking about -- even people in clinical environments. An autism diagnosis is tricky as all hell, and people with genuine expertise in the matter are actually rarer than the average clinician who has read a few papers (or people in an academic environment) would want you to think. Yes, you probably do have some weird quirks, but it's a label that gets slapped on way to fast.

They tried to slap it on my son when he was three. I fought it because I compared what was going on to the DSM-III (the standard at the time) and nope, it was not a match.

I later actually got him to an actual expert in autism and childhood development after about six years of testing.

The gentleman told me that my son was not autistic, but eccentric. We did get another diagnosis because we needed one to get him some extra help in school, but I about died laughing when he told me what he did.

So, while yes, you do have some real and painful issues to deal with, don't rule out eccentricity as part of the issue.

Date: 2014-07-23 11:44 am (UTC)
From: [identity profile] quirkytizzy.livejournal.com
Sometimes the professionals aren't always so professional. I think a lot of them get caught up in the waves of patients who come in determined that they have THIS ONE SPECIFIC DIAGNOSIS and so they start thinking everyone has it.

And ugh, I hate "cybercondriacs" too. I've met way too people who are all "I read this one a site I have this, oh woe is me, what, treatment? Oh god no, if I get treated suddenly I won't have an excuse to whine about this thing I probably don't actually have but want to because it's cool and gives me an excuse to be an asshole."

But that's a personal pet peeve.

I'm glad you've found someone whose working with you instead of railroading you into a specific diagnosis. That's important.

Date: 2014-07-23 10:06 pm (UTC)
ashbet: (Lacrimosa 2)
From: [personal profile] ashbet
I think that your therapist is onto something -- when Asperger's first became publicly well-known, I wondered if I was on the high-functioning end, specifically because of the major social problems I had as a child, teen, and young adult (I always felt like there was a glass wall between me and other people, that there were sub-conversations going on that I couldn't understand, I'm absolutely deaf to subtle hints and subtext, and I was often ostracized when *trying* to fit in, because there was something about me that people found offputting -- I could never quite get it RIGHT, I'd laugh too loud or at the wrong time, or what I was saying would be somehow inappropriate, and I talk too much and use too many goddamn words) . . .

. . . but, after further examination, as I learned more, I decided that it was a tenuous connection and an incorrect tentative-self-diagnosis.

It's actually quite likely that you and I may have a similar PTSD carry-over from our chaotic/abusive/fucked-up childhoods (it's certainly come up enough in MY therapy -- a lot of my dysfunctional reactions can be traced back to coping mechanisms that I developed for dealing with living in my mother's household.)

I have fewer day-to-day issues at this point, because I don't have to spend a lot of time with people who aren't familiar with me, and I don't have to socialize in school/work conditions (where you have to do a lot more self-censoring.) At this point in my life, because I'm disabled, I have the choice of not going into social situations that bring out my particular maladaptive issues and awkwardness, other than sometimes running into issues regarding communication with medical professionals.

>>>And the blogger who said she was very sad and weepy because (according to her) Ehlees-Danlos is a common co-condition for people with Asberger's but for 5 years doctors have been telling her she doesn't have E-D. OK, it's a rare disease maybe the docs are wrong. However, her crusade for an E-D diagnosis was based pretty much on a (a)shaky Asberger's diagnosis (she was never fully evaluated but a psychiatrist had told her that he though she might be on the spectrum) (b)People always telling her she looks so young for her age and soft, young skin equals E-D, and (c)she sprained or dislocated an ankle twice. Twice in her entire life. Having read what people who live with E-D go through, that pot was just disgusting.

Hoooooollllyyyy crap, I'll BET you were furious with her. OMG.

(Some psych diagnoses can be co-morbid with EDS -- depression and anxiety are really common, because EDS SUCKS TO LIVE WITH -- and there's some fairly anecdotal evidence that people with EDS may be more likely to get an autism-spectrum diagnosis . . . but I haven't seen any hard science on it, and it's certainly not *frequent* among EDSers. We just tend to be wound a little too tightly because we're stressed out about what's going to break next.)

I do think that some of your visceral reaction to having an autism spectrum disorder being equivalent to being fundamentally broken is a little harsh, because I know very good, very loved, very productive, talented, and intelligent people who are on the spectrum . . . but I can understand having such a strong reaction against the diagnosis being made FOR YOU.

It was wrong, it felt foreign, and you felt like you were being labeled and pigeonholed (and, it sounds like, patronized) -- it's bullshit that your peers and employers (the school) have access to this medical information and were prepared to treat you differently because of it. I'd have a pretty violent and emotional reaction to that, too.

**big hugs** I'm glad your therapist is helping you get this changed. I agree that it's wrong for you, and I *especially* agree that it's wrong for people who are in a position of power over you were treating you disparately based on what *should* be confidential medical information.

Good luck, hon. And it's good to hear that things are looking up a little.

-- A <3

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