This post was written for TEACCH and The Autism Angle blog, but I wanted to share it here. I think it came out a bit more articulately than what I’d come up with before.
Middle school was rough. I was thirteen and still liked to dress up and then carefully arrange my dolls. I was obsessed with Buffy the Vampire Slayer, collecting every piece of media I could find that might be vaguely related and stockpiling it (for what, I still don’t know). I had only learned to wear jeans in seventh grade, the fabric harsh and too unyielding to be properly comfortable, but the bullying for my preferred stretch pants was even less comfortable.
I was in eighth grade English when my teacher made an announcement. The school was going to be trying an integration program, with a classroom for artistic students who would be in our elective classes but not the core curriculum ones.
I seethed. How could I not have been invited? I was familiar with semi-integrated education already; I had been invited to go to a separate school for the Very Special Needs academically gifted kids. I was the best artist in my class, for sure! Had I not drawn and redrawn the same picture for most of fourth and fifth grade? That picture was amazing! Every one of the hundreds of copies! How dare they ignore me?
Later I found out the teacher had actually said “autistic.” She was from New England and I’d never heard the word before. It’s funny now.
It’s funny because I am autistic. I’m apparently what they call “high-functioning,” but I don’t like the term very much; the division feels artificial and the inherent value judgement is off-putting. I’m not less autistic, it’s really just that I communicate in a way allistic people seem to understand most of the time.
There are as many ways of being autistic as there are people on the spectrum. Autism is described in the medical model of disability as a series of deficits, things that make us deviations from Regular People, but I don’t think that’s true. Autism is a neurodevelopmental difference, a way of experiencing and thinking about the world that is certainly different, but not inherently bad. The disability part enters into things because the world was not designed by or for us, and as a minority group we are expected to conform to the majority, not the other way around. Autism accounts for the parts of me I dislike–low frustration tolerance, perfectionism, difficulties making friends, my propensity for depression and anxiety, my propensity for lists and em-dashes–and the parts I like a lot–loyalty, determination, artistic talents, a gift for learning, my propensity for lists and em-dashes–because you can’t separate out autism from me. Autism didn’t sneak into my room when I was small and steal me away. It’s just a word to describe how I interact with the world around me. Just a word. I sometimes think autism makes me inherently existentialist.
Being autistic means that I experience the world differently than most people, and not in a solipsistic way. There are sensory overloads, a world too bright and loud and full of textures, touching and grating and soothing. Things other people seem to find effortless, like reading facial expressions and making eye-contact, are difficult or distracting or downright painful. I can spend hours engrossed in reading about a favourite topic, unaware of pressing physical needs like hunger, and I communicate my enthusiasm in hand-flaps and wiggles and relevant echolalic quotes. My particular blend makes learning music by ear effortless and by written sheet music nearly impossible, while I prefer written instructions for academic or job-related things and watch TV with subtitles whenever possible (autism, by which I mean me, definitely has a sense of humour). It can be hard to make friends, but I keep the ones I have close, and love them dearly. I keep a planner without the school or high-powered career to warrant it, lists and schedules and therapy appointments all crammed in together because I invariably will not remember them–but my planner will. I get overwhelmed and scared and ecstatic and furious and many more besides, though I struggle to find the words for them in the moment. Words spill out onto my computer screen even when I can’t sustain a spoken conversation or get lost in the pattern of the wood grain behind my interlocutor.
I was asked to write about what it’s like to be autistic, with the guidelines of the DSM to focus the prose. It’s hard, now, because I don’t think going point by point for all the ways I can be seen as damaged is a wise way to build my identity or to speak of it to strangers. I am not a broken allistic person. I am not a collection of deficits wrapped up in skin. I am autistic and I use that word deliberately in the adjective form.
I am just like you. Only, maybe, not.
Hi, Dylan. Google analytics tells me someone in Charlottesville spent a while on here late last week. Then you tried to friend me on facebook. I have a hunch those things are connected.
When you tried to friend me, I responded with a single question: why? I’m not sure yet if I’m interested in your interpretation of that question or your answers to it, but I am interested in a thought-ramble about you. Stina complained I only wrote hurt letters to her, and maybe it’s time to fix that.
To start with, I never wrote hurt letters to you for a few reasons. One is because the pair of you are a collective unit, and I knew whatever I wrote would make its way to you. You were my friend first (Stina intimidated me terribly when we met), and we were so close of course I had to be friends with both of you. We told strangers we were siblings. We told your coworkers we were siblings. And I loved you like the brother I wanted to have. You frustrated me and hurt my feelings and I loved you anyway.The relationship we had could not be quantified in words, could not be described with pen to paper or words on a screen. I didn’t write you letters because I don’t think about you in words.
Not speaking to Christina hurts. Our whole relationship was built around words, around the way we used them and had shared language to draw upon. Not being near you hurts. I miss the physical comfort I had with you–it’s hard to come by, for me, but you made me feel at ease.
You hurt my feelings–often, actually. You refused to use the language I asked you to about my sexuality. You were so dismissive of non-binary genders I never made a sound about my own after a single, tentative suggestion. You styled yourself as an expert on the autism spectrum because you work with little boys with social issues. Dylan. I’m not a ten year old, socially awkward boy. I’m me. And I’m autistic. Insisting I was wrong, that I was looking for excuses, that I wanted to be special, it fucking hurt. You never noticed that I hate the Little Prince, hate it with a passion. Instead you got me another, more special, more expensive copy.
I wasn’t a model best friend. I still don’t know the full story about your falling out with your parents. I don’t know if you had lung problems before you started binding. I don’t know why you became a vegetarian. I don’t know a fucking lot of things. I was afraid to ask. Asking feels off-limits, so staunchly rule-breaking I can’t do it–not an excuse, just an explanation.
I don’t know anything about you anymore, and I’m no longer sure you know anything at all about me. I’m not sure I want to be friends with someone who made me feel inferior all the time. So, why? Why ask? Why now?
So, when you get unfriended in facebook, is that the point where I have to stop referencing them as if I have actual friends so people at work think I’m less of a freak? Because my circle of friends is pretty much limited to Hez, Kit, and Sarah right now. I think a huge, huge part of me has been thinking that when I get back in therapy (next week? Might’ve found someone I like finally), I’d work out how to forgive and forget (not skills I currently have) and we could be friends again. I guess not.
Will I ever stop feeling so sad? I can’t even make steps towards making friends here because everyone gets measured against the litmus test of fucking Stina and Dylan. I want best friends. I want my best friends again.
I’m a failure.
Suffice to say, as far as the job goes, that I am officially prohibited from talking about it, as a Big Pharma Shill of the lowliest rank. I’m enjoying it and seem to be learning quickly.
I wish I could say that I learn quickly in the rest of my life.
My Official Autism Eval Thing is scheduled for this February 18th, and I’m feeling sort of numb about the whole thing.
I’ve started to wonder if perhaps feeling neutral or numb is some sort of response to having too much emotion or feeling, at least some of the time. There is absolutely a point where I am so physically uncomfortable that I become unable to experience further discomfort; in the reverse, I’m capable of being pretty physically neutral, neither exceptionally comfortable or uncomfortable. There are times that I really do feel neutrally about a given subject or event or person or any other direct object of my emotions, and this is an appropriate level of shit-giving. But there are times that I probably should feel more intensely than I do, and recentish events have caused me to reflect if that’s not some sort of really terrible coping mechanism.
Bluntly, I feel…okay about Christina (and, by default and/or tacit agreement and not ever talking to me, Dylan) ending our friendship. And I don’t think I’m meant to, quite yet. I spent days and days heartbroken and crying randomly; it was even worse than when everything ended with Alice because there were almost three extra years involved–three years we’d largely spent living together or next door to one another. And then I woke up, and it was all just gone, and that seems really weird to me. It makes much more sense that my brain decided that this level of emotion is just not viable long-term and turned the whole thing off for a while. That, in turn, helps explain a lot of weird emotional things I remember, both recent and not recent.
I think this level of sensation is directly correlated with meltdowns, for me, at least. And I think that this self-control response of total shutdown of emotion probably has the potential for weird neurological effects, like the part where I don’t remember a lot of the particulars of really nasty meltdowns. I think that my brain is trying to insulate me from feeling everything so strongly and acutely that it becomes difficult for me to even remember the events as they actually occured, because my memory is fuzzy to prevent me from feeling those things again. It’s not a perfect system, though, because I do remember some snatches of image or sound, and the further away temporally I get from any event the better my chances of remembering or feeling it properly are.
I spent a little over a month not feeling anything related to Stina and Dylan.
A coworker made a joke about not having any friends, and I responded that my friends had abandoned me. I got home tonight, and started to cry. The only real way to deal with this emotion and hurt and anger is to feel it, and work through it. Apologies in advance for any meltdowns it triggers, but I think I’m ready to do this like an adult. Maybe.
Damn, I need a therapist. As soon as my shiny insurance card arrives (seriously good insurance for cheap, yes please!), I shall have this thing.
I have an invisible disability. You can’t tell by looking at me that there is anything neuroatypical about me. You might guess when I speak, though I put a lot of effort and spoons into keeping the conversation going and my tone appropriate (volume sometimes escapes me, but I’m usually WNL). If you do notice anything off, it will be in a complete inability to keep small talk going for more than a couple back-and-forth rounds, or the regurgitation of trivia only marginally related to the situation at hand (“Scots have red hair because of Viking settlers…”).
Up until a couple years ago, I had no real awareness of autism. My first introduction to the topic was in 8th grade when the county-wide “special” school was piecemealed out to the elementary and middle schools by group. My middle school became host to an autism-only classroom, placed in a trailer (about half the school was trailer classrooms) and only interacting with the rest of the students by sharing a lunch period. The students were all boys, and all non- or minimally-verbal. I was pissed off that I wasn’t included, because I misunderstood–I thought it was an artistic classroom (thanks, auditory processing!).
It wasn’t until I was in my 20s that I really learned about autism and had the terrible moment of self truth: shit, I am autistic.
You see, I grew up knowing there was something different about me. I was a target for bullying even through college, and work. I did not make friends easily and held the few I did make jealously. I was upset if my friends made other friends, because invariably they would not want to play with me anymore. I was exceptionally bossy because I needed to be able to control the interactions; playing with kids is hard because they do unexpected stuff and I could not handle the unexpected. Being bossy was my attempt to eliminate that element of anxiety. I was a very picky eater, both in texture and taste. I was gullible with peers and could be goaded or encouraged into bad behaviour very easily; I had no sense of what made a friend different from a bully if both were being nice to my face. I probably would have benefitted strongly from a visual schedule, as I needed multiple reminders to do things like chores (and, later, when I was in high school and college and had more control over my scheduling, homework and papers), but chafed against verbal reminders. I exasperated my parents with apparently selfish behaviour and a lack of social graces. I was distractable in classes and made numerous “careless” errors on work I knew and understood because something else caught and held my attention.
I was also hyperlexic, reading and writing by two and a half. I learned early that language helps, and used this to soak up information. I learned as much as I could about whatever I was interested in; my interests could last days or years. I played with dolls well into my teens (and have been carting my American Girl doll around with me still–she came with me to Australia and then to Virginia). I can still sing songs or parts of song word and note perfect that I learned for my fifth, sixth, and seventh grade choir performances, 15 years ago. I only need to go someplace once before I can get there again with few or no reminders or prompts. I could look at a map and visualize my path. I amassed vast amounts of trivia. I spent a lot of time alone, which gave me to the tools to really consider my self-conceptualization. I draw beautifully, and sometimes write well. I experienced the delight of synesthesia, my tastes and textures lighting up with colours.
All of these are things, states, experiences, emotions that I can look back and say “there was probably some autism involved in that.” I cannot meaningfully separate out autism and my personality. Autism has shaped who I was then and who I have become as an adult. Autism meant not looking adults in the eye when being disciplined, and being yelled at for insubordination for it. Autism meant sobbing when the boy I had a crush on “killed” the oil clay cat I made and kept on my desk in 4th grade. Autism meant being perfectly willing to taste pine sap when a girl in my class told me it tasted like maple syrup–twice. Autism meant not skipping a grade. Autism meant being able to hear perfect pitch in choir, even if my rogue vocal chords could not always produce it. Autism meant being teacher’s pet. Autism meant taking an overload of classes every semester in college, just because I could. Autism meant the small, private university I loved over the bigger, public university that had more academic choices–and, because of this, autism meant my best friends.
And yet, I didn’t know about autism.
Growing up, for me, led to a set of beliefs that I have had a very, very difficult time removing. I didn’t know that many of my struggles and achievements could be attributed to autism. Instead, I attributed them to two ideas:
1. I am bad and worthless.
2. I am ridiculously smart.
I grew up feeling frustrated with the world around me, and knowing that the world often felt frustrated with me. I often didn’t understand what was wanted of me, but admitting that and asking for help would mean I wasn’t smart, right? So I didn’t ask for help, and did things wrong, and then I was bad. It was a self-perpetuating cycle. To be not bad meant I needed to be able to do things properly, and I was smart, so I should be able to figure this out! And then I wouldn’t, and then I’d fail, and then my self-esteem would sink another notch. Self-esteem and the appearance of confidence are not the same thing.
Being ridiculously smart meant that it was okay I didn’t understand or particularly like my peers (it was mutual on both points). I desperately wanted friends, and when I was finally working out that bullies and friends are not, actually, the same thing at all, I consoled myself by remembering that I was smarter, better, more likely to succeed. I told them they had smooth brains. I sought out the company of adults and books and the internet–it was still pretty new, then. Being ridiculously smart was the only defense mechanism I had against my classmates, and I hung onto it with all my might. This was not a positive self-image. It was bitter and angry and filled with self-loathing. I could not be normal, so I had to compensate with the only thing I believed was of worth about me.
The thing about defense mechanisms one develops in childhood is that they’re pretty difficult to get rid of later in life. I’ve learned about autism. I make to-do lists and schedules and keep a planner. I write out my thoughts and make more lists and get post-it notes. I rehearse conversations, and try to take advantage of this strange, fabulous brain. I subject people around me to trivia endlessly.
And yet, still, if I miss a dose of my migraine medication, or forget to eat, or don’t call the bank to tell them I’m travelling for a month to Australia and could they please not flag my account as hacked for the fifth day in a row because I couldn’t remember to write the post-it note that would remind me to call, or I make a grave error with my friends, it all comes back and I am eight and I am bad and a failure. I can feel my self-esteem drip away, as if I was a watercolour painting put out in the rain. And if I am bullied at work, or forced to listen to misinformation, or interviewing for a job that I am ridiculously overqualified for, or rejected from a volunteer position because it didn’t occur to me that I could lie (or even just not disclose) about my mental health history, I can feel the irritation and self-righteousness boiling up inside of me. Damn it, I am too fucking smart for this, why can’t they see that and value the one valuable thing I have to offer? (And they don’t, because being smart is really only worthwhile when you can temper it with being sociable, and then we’re back to failure.)
You can’t tell by looking that I’m not neurotypical–not at first. Because I grew up without notions of neurotypical or autism or healthy self-esteem, you’ll get a carefully crafted idea of who I could be, if only I had been aware that I was autistic.
I really like the Aspie Teacher, and need to add her to my blogroll. I usually re-discover her blog when I’m playing on the autism hub and a new post comes up, and it’s always insightful and very helpful.
I’ve been thinking about perseveration since New Year’s Eve, when I read this post by her on the subject.
The idea that perseveration happens with emotions is one I had never considered, but is so true that I read it and immediately sent it to Kitty (“Yes. This!”). I tend to think about perseveration in the way I think most people do: obsessing about a special interest and having a hard time changing topics, fixed patterns of doing things that sometimes look a bit odd (like lining up toys rather than playing with them ‘correctly’ or having to eat one’s food in a certain order), echolalia. This post has really shattered those thoughts for me, made me acknowledge the depth of my tendencies towards perseveration–even when I seem completely normal, at ease.
There isn’t a time or age in my memory which I can point to and say I didn’t have perseverative behaviour and thoughts; some level of this is probably normal, because like with all things on the autism spectrum, it’s not the case that the behaviour itself is abnormal, just the severity. I have always tended to pick up a special interest, fixate havily upon it for a varying length of time, and then let it go. I think that the way that I played with my toys was probably a little odd–I remember that I enjoyed greatly dressing my dolls, but they didn’t tend to do much on the whole. I enjoyed setting up a scene, but not creating a story and then playing them through it. I read and reread the same books (and lots of new ones, too, but there are a handful of books I still reread when I feel stressed), many well below my age and reading level (the Baby Blue Cat is always soothing). I can’t remember a time when I did not repeat conversations (or rehearse conversations to come) in my head and sometimes outloud. But much more strongly than any physical types of perseveration, I emotionally perseverate.
What this means is that when I experience a strong emotion–the type most likely for me to notice I’m feeling (1)–I tend to get stuck in a pattern. I know my friends and family must be rolling their eyes, because it’s obvious, but I’d never thought of it in these terms and it’s actually really helpful and enlightening to me. Aspie Teacher describes it as a loop, like a broken record. I think it’s sort of like those toy trains with tracks in a circle. Once things reach a certain, unspecified level of feeling–once I’m on that track–I can’t stop going around it again and again without help. That help may be time, or the right input from someone else, or a distracting thing (though distracting isn’t a good long-term fix).
Perseverating makes you feel you’re trapped in your emotions, and they go on and on because no one else understands you enough to resolve the situation. Or you’ll think the situation is sort of resolved and then a few minutes later everything comes rushing back and you’re saying the same things all over again.
I fought with Stina and Dylan, about a week before Christmas. We’re okay now, as far as I know, but thinking about perseveration in this way has helped me work out why it happened in the first place. I have an unfortunate tendency to hold a grudge (which is really just long-term perseveration and an inability to forget?) and can’t always predict the small things that will suddenly become BIG THINGS and lead to this. The trigger was pretty stupid, and definitely not worth fighting over, but I got stuck in a thought pattern of being upset and every time I thought I was done, it all rushed back to me. Trying to explain to my mom and Kitty just felt like reliving it. I could not stop thinking about what was happening and my anxieties about the situation.
Venting online is kind of like winning a battle but losing the war – you may feel a temporary boost from the sympathy you get, but it won’t help you stop perseverating.
This is so true. But I would add that venting, really at all, is not very good for me. Explaining once is enough, because after that it just becomes part of the cycle of upset.
Knowing this now, I have some hope that I’ll be better able to catch this and stop it in the future. I also will be able to explain it to my therapist and hopefully make some sense so we can work on appropriate strategies.
Like most days at work, I’ve been hanging out on the autism hub reading; like very few days, I’m actually responding to something I read.
So, Sarah talked about self-diagnosis and the hate that seems to come with that word (or similar, like self-identifying or self-labelling). Some of what she said I found really meaningful, like:
I also know several people who have derived great personal benefits from self-identification. (Some have since been professionally diagnosed.) I am talking about people who have spent their entire lives wondering why they were different from other people, why they experienced certain difficulties. I am talking about people who have had all sorts of psychiatric diagnoses which didn’t fit, people who may have been institutionalized and spent years feeling depressed and suicidal. For many of them, self-identifying as autistic has provided significant help, self-esteem, and self-understanding.
Oh, hi, me. Yeah, I identify with that–becoming autistically obsessed with autism has given me some serious insight into how I work; it hasn’t fixed everything and made it sunshine and rainbows, but it’s at least given me a framework for my self-construction that I don’t have to patch up. I understand why I’m anxious, now. I understand why I don’t understand my friends, my family, even Kit, and why I get so frustrated. Parts of my childhood, like blind rages due to social and communicative frustrations that I could not get my head around that left others hurt (emotionally or otherwise), or how I’ve always felt most at home in print, or my lack of stranger-fear as a toddler, or even hyperlexia all fit into a sense of “this may not be normal for everyone, but it’s normal for me and these other people.” Self-identifying as autistic has helped me.
And if you’re thinking “well, those self-diagnosed people should just get a diagnosis,” then I’d point out that things really aren’t that simple for most people. Here are some common reasons why autistic people do not have official diagnoses:
1. Age. The current autism criteria did not come into being until the late 80s/early 90s, and awareness of the autism spectrum has lagged even further behind. The older an autistic person is, the more likely he/she is to be undiagnosed.
2. Money. I’m not as familiar with the countries outside of the U.S., but I do know that there are significant financial barriers to obtaining a professional evaluation and diagnosis. Insurance companies typically do not cover adult autism evaluations–and, of course, not all Americans are lucky enough to even have insurance. A comprehensive autism evaluation can cost as much as $2,000–if not even more. This is a significant expense for most people, let alone autistic people who may be unemployed or underemployed.
I know there are a lot of adults who would love to be evaluated for autism, but can’t for financial reasons. So to anyone who complains about self-diagnosis: Unless you’re willing to pay for every adult who wants an evaluation to receive one, you don’t have much room for criticism.
I’ve been struggling to get a professional diagnosis for about six months, now. I’ve outlined why I’d like it before, and if anyone really cares I could go into how I meet DSM criteria and all that crap. The first psychologist I saw was crap, and while my therapist absolutely agrees with me, she isn’t comfortable giving an “official” diagnosis due to her own training (she’s an LSCW and awesome, but I do understand her hesistation).
Unfortunately, my hope to get that taken care of ASAP is ruined by the part where I’m broke, broke, so broke. While the psychologist with whom I had been emailing has quite reasonable hourly fees, once you start to consider the testing to be done (an IQ test–hinky as they may be, I still feel sort of fond of them?–and at least one major autism inventory), plus an official write up, a reasonable hourly fee suddenly becomes “Fuck! Where am I going to get $700?” With no serious hope of reimbursement from my insurance, it’s unaffordable (see point 2 in the block quote above)–and this is an inexpensive clinician who happens to have an interest in autism, not someone trained specifically in such. I’m left frustrated and will probably ask my therapist to write me an official diagnosis either way, just so I have the paperwork for school for now.
Continuing with quoting a lot of text:
3. Professional ignorance. Professionals keep working to diagnoses autistic people at earlier and earlier ages–because we’re all doomed if we’re not diagnosed by the age of two, you know–but tend to know very little about evaluating adults. Indeed, there aren’t even any specific criteria for evaluating adults–a problem when many autistic adults learn to “pass” as neurotypical to varying degrees. And while consultation with parents or others who knew the autistic adult as a younger child can help provide corroborating evidence for a diagnosis, this isn’t always practical, for a variety of reasons. I know autistic adults–particularly women–who have had difficulties finding qualified professionals to evaluate them even in well-populated areas. How much worse might it be for autistics in sparsely populated areas?
4. Stereotypes. This is particularly an issue for women, but it’s certainly not limited to us. Talk to enough autistic adults and you’ll find tons of stories of professionals telling them they couldn’t be on the spectrum because…
-They can talk
-They have a job or have graduated college
-They are in a long-term relationship
-They have a friend–may sometimes be plural, but sometimes only singular
-They can make (or fake) eye contact
-They aren’t like this other autistic person known to the professional
-They are an adult! If they were really autistic, they would have been diagnosed as a kid.
The last one is particularly high on tautological “logic.”
These two really touch raw nerves for me. I live in a pretty rural area, though I’m within about 2 hours of two moderately sized metro areas (including the state capital) and within 4 for DC. Combine lack of knowledge of how adults–especially bright adults who have learned to fit in or else–present on the spectrum and especially ALL of point 4 (each and every one of those BUTS was used against me by the first psychologist), and I know personally how difficult this shit is.
I also partly agree with some of the comments that disagree with her post (mostly because I think they aren’t speaking to the point of the post, which is institutional difficulties with obtaining a diagnosis as an adult). I think it’s disengenuous to ignore the theme of the post, but the comments also do make some valid points. For one, Stephanie Lynn Keil’s comment:
It’s hard for me to take self-diagnosed people seriously because I knew a few who self-diagnosed and when they went to the doctor to get the self-diagnosis confirmed they were told they didn’t have an ASD. So they just decided that they doctors were wrong and they were right.
Sorry, I can’t endorse this.
People don’t self-diagnose diabetes, cancer, schizophrenia, etc. If you self-diagnose yourself with diabetes and then your doctor tell you that you don’t have it you don’t go around telling everyone that your doctor is wrong and really do have it, do you?
At first glance, this seems pretty okay to me–she’s right, self-diagnosing medical issues is called hyperchondria and is not cool. Then I thought about it some more.
First of all, comparing diagnosis of autism (or any psychological abnormality) to diseases is NOT on–even if only for the fact that we can test reliably for things like diabetes or cancer, but we cannot for ASDs or most mental healh issues. This isn’t even to touch on the fact that comparing autism to a disease is insulting for anyone, self-diagnosed or not.
What she appears to assume is that all professionals are the same (ignoring points 3 and 4 of Sarah’s post, essentially). They aren’t. I chose to go to a psychologist who was accepted by my insurance. No other reason. I can’t afford to go outside of insurance (I could barely afford him as he was), so I didn’t have the luxury to choose a doctor with significant knowlege of autism. Additionally, it’s pretty easy to test for diabetes, but diagnosing autism is tricky in the first place and just gets harder the older the diagnosee is. There is no “Yep, you have it!” test like there is with diabetes, and the older someone undergoing evaluation is, the more likely they are to present as “normal”–kids who are more severely affected by their autism are diagnosed much younger, it’s easily visible in the average age of diagnosis gap between “autism” and “Asperger’s syndrome” (around 3 for autism, but 7 or 8 for Asperger’s). I understand and really appreciate that it can be hard to take people seriously, especially after they’ve been dismissed by a doctor, but it seems like a rejection of reality to dismiss them out of hand. Repeated doctors, perhaps? But having been told I was wrong (and given two inappropriate diagnoses that I don’t fit the criteria for–if he had been a good doctor, he’d at least have sent me away with nothing!), I can’t whole-heartedly support the belief that because a doctor said NO, it’s forever or even likely a NO.
I also liked part of the comment by Nightstorm (who makes a joke about Otherkin in the full comment, but seriously seems to be…nevermind):
Self-diagnosis has no social advantage, you can’t get governmental support SSI or any social help. So it becomes more of a personal thing which is fine. I see no problem with self-dxing as a place holder, but my big issue are the little rags who use it as a replacement for an actual diagnosis. No. It isn’t. There is no actual advantage to it. It just ends up being way for some people to fit in which for me is insulting. I didn’t pick this label, because I was lonely and I wanted a group to participate in. And the problem is, when people self-diagnosis and then act like douches, it does make us official diagnosed look bad. I can’t use the term “asperger autist’ or “has asperger syndrome” online because of the douches who abuse their label.
She’s right. There’s no social advantage to a self-diagnosis of Asperger’s…there’s really no advantage at all. It makes your friends think you’re sort of nuts (hi, Dilly!) and can cause rifts with your family. I have a hard time seeing a use for it except as the place-holder he describes, which is where I am now. On the internet, anyone can claim to have anything–anyone who has participated in a largish forum has known people to fake pregnancies, suicidal ideation, marriages, anything, whole lives. There’s no requirement for veracity. So a lot of people (hello, livejournal Asperger’s group) self-diagnosis without any real cause except that they heard it’s for socially awkward people and act like jerks and get the whole group misunderstood.
But…there are all those reasons that someone might not be able to get professionally diagnosed. I think there is an important distinction to be made between those who want an official diagnosis and those who do not (the former says, to me, that it’s not something trendy but real underlying issues, unlike the latter), and even the reasons why someone wants a diagnosis and how willing they are to accept hearing “no, sorry” (exhaustive research and education paired with self-understanding and need for supports is much more worthy than an excuse to be a jerk). I can’t dismiss all people who are self-diagnosed because I don’t know their reasons.
I’m no longer sure where I’m going with this, actually.
Edit: The awesome comments of awesomeness by Julian^Amorpha are totally worth checking out. They are too long to quote from, but involve a thorough dissection of privilege and minority group status that I feel really refutes the complaints Stephanie Lynn Weil and Nightstar both have (and that I partially sympathized with above).
I think my point is that getting a diagnosis is a fucking pain and even I, relatively privileged to be well educated, verbal, with a few friends, and a job, can’t afford it even though I desperately want it and believe it to be appropriate.
In lieu of a conclusion, I give you a kitten:
So I’ve been working in my head on a tentative, unified theory of autism, giftedness, and extraneous diagnoses like NVLD (that’s nonverbal learning disorder, plebes) and hyperlexia. I’m working on writing it up–there’s a lot, and a lot to reference. I’m certainly not the first person to notice the overlap between these things, and there’s especially a lot of stuff out there trying to relate NVLD to the spectrum (or, sometimes, separate Asperger’s from the spectrum and group with NVLD, a stupid move of stupidness).
My therapist lady has reccomended another lady who is part of the larger collective where she works who is a psychologist and does a fair amount of stuff with kids through adults on the spectrum, specifically diagnostic and reccomendation-y type stuff. I’m pretty interested in having that piece of paper (especially one with extra words on it, like “Takes tests by herself, preferably with a computer,” because that group exam shit did not go over well in Melbourne–I seriously wonder how much higher my test scores could have been on end of grade/level tests in school had I been allowed to do them on my own), so this is of interest to me. The major downside is that I have to pay out of pocket and then talk the insurance into reimbursing me. The upside is that her out of pocket fee is not exhorbitant, compared to other psychologists who offer testing (also, she is not in DC, just in Harrisonburg–that place I go anyway).
I knew that this psych lady had read the bullshit report put out by the first psych I saw, so I emailed her to ask if she’d read a self-report as well. She agreed, and I gave her an eight and a half page condensed history, reasons for wanting a diagnosis, and explanation of how I meet the criteria for Asperger’s. I noted that our primary concern will probably be in working out the difference between giftedness and autism. She seemed to agree, and reccomended we do a real, honest to fsm IQ test (I have ethical issues with them, see the footnote) and also some autism testing–and she’d like me to bring in what I’ve already done, like the Aspie Quiz and AQ.
Fun! I like tests! I like official pieces of paper!
Insights I have had in the past few days:
1. I really can’t skip the iron pills.
I thought I was in the clear because the month that Kitty was here was like some unending meat-fest, in terms of the relative level of meat in my diet. I normally don’t get a lot of meat because it’s expensive (I only buy free-range, hormone free stuff if I’m doing the cooking), and there’s that whole raw meat thing which I’m not down with. I eat a lot of vegetable proteins (mostly soy) and cheese and yogurt and hope for the best, although of late my yogurt consumption hasn’t been dairy, either. Of course, this is illogical, because the body continually uses its stores of iron and needs them to be replaced.
My iron levels have been ridiculously low in the past, something I first discovered as a teen when I started to give blood–and got rejected about every other time for too-low iron. I’ve had this followed up by doctors intermittently (with lab work) and the usual reccomendation is to take a ridiculous amount of iron pills and get on with things. The thing is, iron pills make living unpleasant–they cause my already unpleasant stomach upsets to become worse. So I avoid taking them as often as I probably ought to and rely on instinct (ha) and/or Kitty to tell me when I’m due for a pill.
So I’ve had this headache for about 2 weeks. I’ve felt stuffy, dizzy, tired–very tired. It’s been really bad, but not migrainous, which has been a confusion and a relief. The extreme visual side effects of my topamax (for the migraines, a small dose) have been out of control to the point that I’ve been seriously concerned that I’m beginning to have occipital seizures. It finally occured to me that it’d been about two months since my last iron pill, and the amount of meat I ate while Kitty was here not withstanding, that is an awfully long time.
The side effects were the first to drop away, back to their usual level of obnoxiousness. Then the tireness, and then the stuffiness, and last the headache (it’s still there a little bit). Ah, anemia. Lesson learned: remember the things that I already have, rather than being afraid of things I might have in some horrible alternate universe.
2. On the subject of Things I Have vs Things I Don’t But Could In An Alternate Universe, I got the results (finally) from the first clinician I saw. My overall feeling after having read his report is that I was swindled out of a large sum of money for very little effort on his part, with a dose of sexism and perhaps a side of pet theory.
What I should make clear before I go on is that this psychologist has social anxiety himself, and made a point to tell me this a number of times during our two meetings.
So, according to him (although not my current therapist, who agrees with my self-assessed aspieness, and with whom I will finally be discussing these results this coming week), I have a social anxiety disorder and avoidant personality. The report is like some strange hybrid of what really happened and what I think he wanted to happen in our meetings–he gave a lot more weight to answers that were not weighted by me, and did not listen to a great deal of what I told him. The fact that I meet all criteria for AS was roundly ignored, although he was “kind” enough to leave a “rule out PDD” in my Axis I. The fact that he did not care to specify which speaks volumes as to his skill.
The thing is, I have this handy internet right here at my fingertips, and have accessed the guidelines for social anxiety disorder (social phobia–which should have been given a specification, even if it was only ‘generalized’) and avoidant personality disorder. As far as I am aware, I do not meet the criteria for either of these categories.
Now, I might meet one criteria in SA (point D); I do tend to avoid social interactions in the scope that I know this psychologist was discussing (parties). This is because parties are often loud, with new people, and there’s just a lot going on sensory-wise. I don’t dislike them once I’m there, usually, and I attended parties on a pretty regular basis in Melbourne. I go out to eat, to the store, to work, to see plays and movies, all without problems. I believe that he interpreted my dislike of other people because I don’t understand their intentions all of the time for fear, and this is a problem within his own nature–projecting his own diagnosis–not a problem with me. I will concede to point 6 (the first part–I think I am often a bit inept!) in the avoidant list.
So he’s given me this inaccurate set of diagnoses, ignored my accurate self-diagnosis, and I’m trying to work out why. The best I can come up with is this: I am a girl. I am very smart, and I am largely self-sufficient. I was on my best behaviour (no stims, no tip-toes, no meltdowns, compliant and test-taking and omg I love tests it is a miracle this blog is not overrun with internet quiz memes yet). I have a girlfriend, which explicitly counted against me in his final review (queers and people in relationships can’t be on the spectrum now–I guess I’ll have to tell the researcher I’m helping out via the GRASP newsletter). He had a medical view of autism and the spectrum, and was not open to neurodiversity as a concept, nor to the social model of autism.
He did not ask, or wish to know about, my Theory of Mind, my executive function. I was “too open to new experiences” to be really aspie (because one of the tests they gave asked if I liked to travel–in my opinion, an aspie dream of planning and maps and public transport and endless flight details).
He asked, at one point, if I held grudges. “Most autistics do, I find.” I stammered a no, because it’s rude to hold grudges; later I realized that I do, profoundly. I still hate the kid who forged my signature on a prank love letter in 7th grade and slipped it into the locker of another boy. I lost one of my best friends over a grudge because she wouldn’t apologize for being cruel. I wonder if he would find me more autistic knowing that this envelope has only added fuel to an already well-burning grudge, or if he would just accuse me of faking?
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
Fuck Yeah, Kate Miller-Heidke - the only active Kate fan site, which is baffling.
The Branden Rose - the only active Monster Blood Tattoo fansite, which is less baffling.
I also have a semi-successful etsy shop, which you should visit, below.
A brief history: