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.

This is a long lead-up, but it’s probably worthwhile. The combined topical drift and pedantry is also pretty indicative of what it’s like to live in my head.

So last week I lost my star on Jezebel. Jez is a Gawker Media website, and uses a tiered commenting system; commenters with stars by their names are always visible and post in black text, while commenters without stars are defaulted invisible and with grey text unless a starred commenter “promotes” the comment (the text turns black, but the commenter herself will remain unstarred). Last summer, when they put this sytem in place, I already had a star (the rules used to be 40 people following you or more earned a star), so I’ve been blissfully spouting off about disableism, autism, and other topics for close to a year, confident that my comments were always visible and always likely to be read. I have about 250 followers right now. In what ultimately was not a surprising move, I called out the editors on their ableist language again and got my star taken away as penalty (also, some delightful splainin via email!).

Since then, I’ve found that I’m less inclined to participate, because I don’t feel my contributions are automatically read or assumed to be intelligent. Funny how losing privilege–even silly internet privilege–reinforces the desire to not speak out at all. I posted a comment in the free-for-all section of Jez, groupthink, about this effect and ableism on Jez and it garnered a lot of interesting responses. One of the most interesting made reference to disability studies.

I think I knew, conceptually, that there was such a thing, but it had never really occured to me to think about it before. I’m seriously wondering if one can do a combined PhD/MD in disability studies rather than the more usual neurosicence or pharmacology or such.

This lovely commenter also gave me a link to Disability Studies Quarterly, since I had (of course) brought up autism (I’ve made no efforts to not be out, as it were, on Jez) and this quarter’s special topic is autism and neurodiversity. Please read any and all of the articles–I am, and they’re great. I can’t talk at length about them yet as I only got most of the way through “The Superior Half of Speaking”: An Introduction when I was struck with an astounding thought.

(This is not that thought, I’m getting there.) My brain works in a somewhat unusual way. I’m not quite sure if it’s autism, giftedness, or both, but I like it and would really hate to lose it. Like many people on the spectrum or with related conditions like OCD or ADD, I have difficulties with focus. I’m really awesome at focusing on one thing to the exclusion of everything else, which can look pretty obsessive, and I have a hard time changing the topic or subject of my focus. Changing tasks is difficult for me. I can marginally participate in a conversation and then revert right back to a previous topic, because that’s where my attention was the whole time. Multitasking and I are not friends. Conversely, unless I am interested and engaged in a topic (and sometimes even then), my attention wanders away from me to something more interesting (usually my own brain and products thereof). I cannot list how many times I have gone to do a simple task like put on my shoes or get my phone out of my bag and been waylayed for five, ten, fifteen minutes because I had a thought! and it was super interesting! and I forgot what I was supposed to be doing, and then when I get the feeling that I am meant to be doing something else I spend another few minutes trying to figure out what it was.

Meanwhile, as I’m busy focusing on one thing with the concious part of my brain, the rest of my brain is in a constant flurry of activity. As I take in information, it fits into what is my neuron-based cross-referencing system. My brain works like wikipedia: the more information I gather, the more connections I can make between facts and “articles”/topics, and it does it all without my really paying attention to it (though when I get distracted by my own brain, it’s like hitting the “random article” button on wikipedia, which, I think you’d agree, is way more interesting than a lot of other stuff).

Sometimes my brain makes really great connections–coherent thoughts so good they startle me out of whatever I’m doing. Have you seen House? It’s like that. And possibly just as obnoxious.

The topic of this blog post was one of those OMG I AM HAVING A THOUGHT moments.
So I was reading “The Superior Half of Speaking”: An Introduction, and I got to this sentence: “They understand, that is, how plenty of what is vexing about autism would not be so were society arranged differently.”

I studied International Relations for five and a half years of my life before crashing and burning. I have a BA and a GD in the subject, and while I found most of the theoretical stuff to be too abstract (or maybe just too abstract, too quickly–as Kit would surely point out, I can and do grasp philosophy when its presented patiently, repeatedly, and in terms I am familiar with), I really latched onto a single theoretical model and still like it a lot. I was a proud Constructivist, and the only one in either university, as far as I know.

“Constructivism” exists in a lot of disciplines, but I’m only super familiar with the political model. Basically, Constructivist thinking holds that the international political system is a self-perpetuating entity. The political systems we have are what they are because every time a nation makes a political move on the world stage, they reinforce their place in the picture. If you believe strongly as a political leader in open borders, or fair trade, or isolationism, or completely unobstructed free trade, you can’t wait for other countries to make the same emotional decision. By declaring your country to hold any given ideal, you inherently change the system of nations and your importance in that system. It’s fancy political speak, really, for “be the change you want to see” (I think Obama is a secret Constructivist, or at least his slogan-making people are). My Master’s dissertation, should it ever arise, was originally going to be on Constructivism and shared language leading to the perpetuation of shared political ideology. This is a topic I’ve read about, thought about, ruminated about extensively–information that my internal wikipedia can pull from without my even noticing.

So I read that line (again: “They understand, that is, how plenty of what is vexing about autism would not be so were society arranged differently.”) and suddenly I had A Thought:

Neurodiversity and the Social Disability Model appeal to me because they are Constructivist concepts.

The idea that disability is inherent in society, not the person, is meaningful to me emotionally (I don’t feel particularly disabled), but it also appeals to me intellectually. I am part of a broad spectrum of people, and my particular band of wavelengths is called autism (actually, I see the whole of neurodiversity as a 3-d Venn diagram, but I’m not sure how to translate that into words and haven’t found materials to create it visually yet). The idea that my group does not create the power structure because it is not dominant, so my group’s needs are seen as extraordinary or disabling, is an idea I can understand through my experience as a political Constructivist and translate into understanding in disability studies. Before, I was approaching disability studies as an unknown field, full of unknown ideas and language and concepts that (while I’d certainly get them eventually) were anxiety-provoking because they would be theoretical to me. Now I feel like I have an “in” and I guess I need to see if either Sydney or Melbourne offer a disability studies program, or would be willing to partner with another local university (I know LaTrobe has an autism research centre, so maybe they’d be a good place to look) to do a combined PhD/MD. Pursuing a combo–this specific combo–would make me be a better autism advocate and, I think, researcher. I think it would also make me more qualified to be a professor of the occasional class.

I didn’t really need to complicate this career/educational goal of a simple MD, but I think this might be even better.

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’re female
-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.

And yet…

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:

First of all, I think that this expresses my current mood best. There is a box of sugar cookies behind me, taunting.

True story: I once made Dylan a sugar cookie fiend out of fleece and it plays the sugar cookies rampage. I am aware that you are stunned at my awesome.

I’m also currently stunned at my awesome, for altogether different reasons. I shall elaborate.

So, my job sucks. This is actually not true. I like most of the individual elements of my job (medical filing, working with kids, working with kids who’re autistic or crazy or sad, playing on the internet all night), but there are two parts that suck: the fact that my shift is night shift, and the fact that I cannot stand my coworkers. I’m really not sure if it’s an autism thing or a smart thing (or if I could separate the two anyway), but I find them endlessly tedious with their social games and talking about things which do not hold any interest for me. This has been a long-standing and escalating complaint, from “You know, I really don’t have anything in common with these people” to “Not only do I not have anything in common with them, but I wish they’d stop telling me about their kids and little league and parking tickets–even I can tell someone doesn’t want to listen if they put on headphones, so why can’t they just shut up when I do it?” to “OMG STFU I AM WATCHING HOUSE” to my sobbing on the phone to my mom last Sunday morning that I really didn’t think I could come back in Tuesday (that would be right now, as I’m typing–technically Wednesday morning, but that doesn’t count).

She came up with a brilliant suggestion: move to Atlanta. My dad lives there, and will gladly put me up. I can quit this job in 4 months when my lease is up, move to Greensboro temporarily while I clean the apartment and then go to Melbourne, and then finish moving southward and get a job there. It’s a very big city–my favourite kind!–and full of healthcare related shit and IR shit, so I should be able to find something.

I’m scared, because my only friends are Kit, Stina, and Dylan, and I won’t have any of them. But this is why there is an internet. (This is also why there is an internet.) I will hopefully be able to meet some local Asperger’s/autism groups, maybe join a choir, maybe take up dancing again? I can go to school as long as I find a job that pays me enough (and I plan to try to stop by Melbourne Uni to determine exactly what they’ll want from me for the med school), and Prosper will keep me company.

As someone who perseverates to the point of panic on incomplete plans, I have a sense of restfulness and lessened anxiety for the first time in months.

Now I just have to convince my bosses that my plane ticket got cancelled so I don’t need to use all of my vacation time in May!

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).

Yeah. So.

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!

I first heard the term “asynchronous development” in a book called Misdiagnosis And Dual Diagnoses Of Gifted Children And Adults: ADHD, Bipolar, OCD, Asperger’s, Depression, And Other Disorders. I found this book rather by accident: I was ordering my tangible, touchable, lickable copies of the first two MBT books along with a second copy of my favourite book on Asperger’s in the whole world (Kitty wants a copy and I promised to purchase it for her). It turned out that alibris.com was the much better deal as a seller there had all three in stock (the total was about $10 less than amazon), and I glanced at the reccomended books before checking out. This book was on there.

I am not the sort to buy books before I’ve read them. I place great value in libraries, and tend only to purchase books I like enough to actually wish to reread or reference. I checked the local library system, and it was in stock at the Churchville branch, so I finished my order and headed over to Churchville (the libraries have been losing items between branches lately, so it was easier to drive 15 minutes myself).

Despite having been identified as ‘gifted’ in school, I didn’t know very much about gifted education–how it could be done, what type I had had versus other types, or even how I had been tested versus other tests (though I happened to have a copy of the paper verifying I needed gifted services, so I was able to find this information). This book was helpful in pointing me in the right direction: Hoagies’ Gifted and SENG. The rest of the book was mixed. The opening chapters on gifted theory, especially the introduction to the concept of overexcitabilities, were very good, but the section on Asperger’s was pretty craptastic (1).

So, asynchronous development. It’s this idea in the gifted community that I’d never heard before–keeping in mind that I work in a kids’ psych hospital and am a semi-active participant in the autism community. Giftedness is thought of as developmental acceleration, but kids can be accelerated at different rates for different things, and not at all for some things. So a child of seven, in 2nd grade chronologically, might read at a ninth grade level, do math at a fifth grade level, and have 2nd grade social skills. Her development is asynchronous.

This is, naturally, frustrating for everyone involved because you want to challenge the child, but when her social peers are her own age, but they can’t keep up mentally, and she is socially unable to keep up with her academic peers in any of her advanced subjects, it becomes difficult to educate such a child in a traditional setting.

I would like to propose the autism community begin to use the concept of asynchronous development. It is an easily understood, non-judgemental, and quick way to describe a person’s functioning level while remaining respectful of their skills and adaptations. This would be a much better shorthand than the currently used “mild/moderate/severe” which tend to imply “possibly can improve/work very, very hard/there is no hope” and are discouraging for parents and autistics alike.

I’m going to try to come up with a set of scales, but I could really use a researcher to work with me on this. Anyone know anyone? Children’s scales are the easiest, of course, because you can rate against other children of ‘typical’ development. But I think we can formulate an adult scale as well, with different criteria.

There is also the idea in the gifted community which would be helpful to bring over into the autism community of different paths of development. Giftedness perhaps should not be thought of as accelerated development at all, but as a different way of developing that looks accelerated compared to peers as children. Intellectual giftedness involves deeper ways of thinking, leadership giftedness involves an outstanding ability to be a leader that is a life-long skill, musical giftedness is lifelong as well. These talents all begin with earlier skills in childhood, but also quicker learning and more depth of learning. The gifted inevitably perform with a deeper understanding, whatever their field.

If we can stop conceptualizing autism as developmental delays, but instead begin to think of it as a different way of thinking and being, I think it would being a positive change to to lives of many autists. The social skills of those on the spectrum are only delayed for a handful of years before, realistically, they ought to be called ‘divergent’. Our social skills are certainly developing, but not in the average, NT way! Now, yes, some developmental delays associated with autism probably should stay under that label (things like toileting or other ADLs). But communicating and social interaction are major hallmarks of ASDs and often cited as “delays” when they are really just different developmental paths altogether that those on the spectrum might take.

It is also important to remember that one can simultaneously be on the spectrum and be gifted. This lovely asynchronous development makes it possible; it sometimes makes life even more frustrating, because you can write 1280 word blog posts about your current topic of interest and forget to eat food all day, but, you know, I don’t think I would choose to be any other way.

1. I actually have a good idea of why this was, and expect you to go read the link on overexcitabilities and then come back here, if you don’t already know what they are/haven’t been exposed to my excited rambling. Open a new tab, I’ll wait.

So, the authors of the book put forth a few times that a kid with psychomotor and intellectual overexcitabilities might be mistaken for ADD/ADHD, or even genuinely have this disorder at the most extreme level. That seems pretty logical to me–a kid that’s a little bit bouncy and very smart might get slapped with a label because he’s disruptive in the classroom due to boredom.

What they seem to overlook, though, is that the sensory/sensual and intellectual overexcitabilities combination is pretty much the profile of a mild ASD. The authors spend the section on Asperger’s talking about how aspies cannot ever, EVAR have empathy (and then using examples of sympathy–they don’t seem to have a clear separation?) and strong stereotypic interests like deep fryers and vacuum cleaners. Frankly, most of the aspies I know online demonstrate well-developed sympathy and a number of us are just fine with the empathy (it just takes a little bit more Theory of Mind, and it tends to be the older aspies because of this). We all have different interests, and while some have been a bit, um, weird, many are things that NT folks are commonly interested in, too–it’s the level of interest that is definitive.

But, see, that’s the sticking point for the gifted community and these authors, because the level that aspies are interested in things is the level that gifted adults and kids are interested in things, a lot of the time; also, as aspies get older we tend to get interested in more things at once (so rather than one or two interests, we might have three or five or six) and all of the sudden you can’t tell an aspie apart from a gifted adult. Funny, that. The gifted community does not want labels for their kids; it is strictly antilabelism, as far as I can tell. Oh, they want labels defining HOW gifted, but they don’t want anything noting any psychiatric or other developmental issues like ADD or an ASD. So the fact that being intellectually gifted with sensory issues looks pretty much exactly like a mild ASD does not compute.