Currently viewing the tag: "neurodiversity"

I have a massively awesome idea for a DM Cornish/Half Continent fansite.

I have the means (ish) to create it.

I have the desire to do it; in fact, it is fast eating up a lot of my headspace in a dangerously compulsive sort of way. Actually, the Half Continent in general has, I must acknowledge, reached a level of obsession only known to autistics and 12 year old girls.

What I’m lacking is the spoons. I’ll need to learn new coding programs to create what I want to create, and then there will be a lot of data imput into those programs. I know I have a strange mix of ability within one specific executive function (perseverance or grit)–for short-term projects, I’m okay, and I’m one of the most persistent people I know for long-term goals. There’s even a research study that I participated in, with people I know to corroborate my answers, that noted I have more grit than most people my age (I blame autism, as with so many things). But medium-term stuff…eh…I kind of have a history of terrible failure. Like this one time where I tried to write a master’s dissertation. Ha.

So I have this history of not being great at doing medium-term projects. Based on my completely fabricated estimates, this would be one such thing. The only thing worse than not giving into my compulsions and starting this project would be not finishing. And so, I procrastinate, which makes the compulsion part worse, but puts off my fear of self-caused failure. But procrastination also provides some measure of stress relief I don’t get during my work week (update: still like hell), so it’s a coping mechanism, too.

Basically, living in my head sucks right now and I would like $10,000 so I can quit my job and move immediately to Melbourne. Please.

I loathe person-centered language.

Part of my job at work is supervising residents in their work setting (if you want more information, feel free to scroll down to the locked post). They do a variety of jobs, and one of those is making the training binders for new employee orientation. This is a new task for my team, so it’s impossible for me to judge how independently they’ll be able to do it with time and practice, but this first lot of 15 needed to be done by yesterday and it ended up being mostly staff doing the work. Since I greatly enjoy doing this sort of menial paperwork–sorting, organizing, labelling, filing–I was very good and found it more enjoyable than most of my job.

The binders are a drastically better collection of information than I had at my previous job. There are sections about developmental disabilities, cultural diversity, and appropriate teaching strategies for adults. There are a few standout ideas in there, like an article about the differences in language use between the people who live in the group homes and staff, and how it is intensely othering.

There’s also a big section on using person-centered language, and having stared at it for days and days while doing these binders and then having a little nudge from the internet, I feel like I now have a simple explanation for why person-centered language unequivocally sucks.

Person-centered or people-first language is this idea that we should phrase things with the person placed before the disability:
Person with autism, not autistic person
Person with intellectual disability, not intellectually disabled person
Person with hearing loss, not D/deaf person
Person with vision loss, not blind person

Some disabilities lend themselves more to one construct or another–person with CP sounds pretty tolerable to my ears, while CP person or cerebral palsied person sounds weird (Kit, I welcome your thoughts on this specifically). I don’t like any of the adjective forms of Asperger’s that have been constructed (though it’s sort of moot since I think autistic is a better descriptor for the whole spectrum anyway).

At first glance, this idea doesn’t really bother me. I’ve felt pretty neutrally about it for a long time–I couldn’t see how it was harming anyone to use unnecessarily long constructs when the shorter ones were just fine and inoffensive, but whatever. If someone wanted to “put the person before the disabilty” and that led them to treating disabled people as equals, then fine.

But my work is inherently about how we (society-general we) can’t treat people with disabilities as equals. Every person I work with has a documented intellectual disability, and most of them have multiple disabilities. Because of this, they have been deemed unable to be their own guardians, their own caretakers, their own adult people. It’s not that I think needing assistance–any level, from mild to total–makes one less of an independent adult, but few have actively chosen of their own right to live with us. They are there because they have been “placed”–deemed too unable to learn, adapt, care for themselves that they must have caretakers whether they want it or not–rather than because they decided that they want help.

I think person-centered language actively harms them, and me, and all of the disability community.

Person-centered language claims to be about people first, but why would we need to make awkward linguistic constructs if disability was a neutral concept? Saying that we put people first means that you think disability is shameful, in need of being hidden or removed, that you are unable to think of people who are openly disabled as people. Saying I am a person with autism rather than an autistic person denies that autism is a value-neutral descriptor for the way I think and experience the world around me. It tries to make autism into something separate from the “real” me (and that leads to dangerous curbie mythologies and “treatments”), into something that is bad. Saying we are people with disabilities rather than disabled people shows that “disability” is a dirty word, something bad and to be avoided, rather than a word that describes our interactions with the community because of our atypical strengths and weaknesses. Saying we are people with disabilities rather than disabled people removes the burden from society to make adaptations and accomodations and places it upon us.

Using person-centered language ends up devaluing the person because it attempts to remove a central part of who they are and make it negative.

Unfortunately, I would probably be fired if I made some key edits to the binders, so they’ll remain as-is. For now.

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I’ve been thinking about inertia and perseveration lately. I thought I’d been thinking about depression and my own early signs of a life-long sprint from black clouds, but apparently the part of my brain that ruminates without my knowledge was busy at work on something altogether separate.

I’ve talked about inertia before–I should probably start using a tag for it and the other things I mention regularly. And I’ve talked about perseveration, and how I think it’s a useful, adaptive process in working through executive function difficulties (see the link to rumination).

A quick recap: inertia is the tendency to keep doing what you’re doing rather than change paths (with a nod to Newtonian physics for the basic concept), and perseveration is going over something endlessly, either because it provides comfort, stimulation, or a solution to a problem or otherwise fills some need.

I think they are the same thing, or facets of a larger single thing. And I think that thing is at the heart of difficulties in choice making in autism spectrum disorders and at least partially to do with why concrete plans are necessary. I’m not sure if it is part of the larger executive function or a related but separate thing.

Inertia has negative connotations, at least for me. Inertia is continuing to do something that isn’t really great for me (like not eat or not sleep) because it is easier than the alternative (procuring food or getting ready for bed–which usually entails saying goodbye to Kitty, something I loathe). Inertia means staying in bad jobs because it is easier than finding new ones. Inertia means multiple degrees in a field which doesn’t hold a career or major interest to me, because considering a change took too much thought and spoons to be done at a pace that would have allowed me to change.

Perseveration has a mixed connotation. Perseveration is going over and over songs until I know them by heart and can sing them pitch, tone, and word perfectly. Perseveration is almost always thinking about one of the few topics I am especially interested in, like autism or MBT. Perseveration is the way my brain works to process complex information by letting it tumble around and then finding notable, interesting things in what that information sticks to inside my head. Perseveration is eating the same food for three, four, five days in a row all. the. time.

Both are the inability to change topics or actions without a strong desire to do so. That desire can be internally or externally motivated, emotionally or physically motivated.

This inability to move off a single track can make it difficult to impossible to make decisions and choices. I know that the DSM is too strictly categorized for this to ever happen, but perhaps autism should be considered partially an anxiety disorder.

I wanted to buy a computer–a laptop. I researched laptops for months, learning about screen types and the inner workings of a machine, learning about various OSes and interfaces. I learned what my price range would need to be to get something like what I wanted (a tablet with the ability to write directly on the screen). And then I didn’t do anything. I knew what I wanted, but I was absolutely paralyzed by the idea that as soon as I made a choice a better, cheaper, more awesome choice would appear and thus be unavailable to me. I finally bought my laptop only because it was on woot that day and the price was about half what I’d been prepared to pay previously. I needed that external limitation to make a decision: woot is only one item per day and there is no guarentee the item will ever turn up again, the price is drastically lower than anywhere else online, and there is a limited number of units available–but you can’t tell how many until it’s sold out. I’ve had this laptop for about two years now and I suspect I would still be dithering about getting the BEST LAPTOP EVAR had I not been constrained by this.

Having choices makes choosing extremely difficult when you tend towards this style of thinking. The more choices I have, the more likely I am to fall back into the holding pattern of inertia and just not choose. When I am hungry, I need to have explicit options rather than an open ended “what do you want?” because the latter will only lead to frustration and upset. (Kitty, in her wisdom, knew this years and years ago and tolerated my saying over and over that I hated planning meals and that it made food unappealing, and to her I apologize again for being a shit. She was completely right and knew me better than I knew myself at the time.) Having a schedule means I actually get things done. Without, I am likely to spend all day online, playing games or looking at tumblr.

Unfortunately, none of these things allows me to write coherent blog posts sometimes!

I find that when people on the autistic spectrum fail to understand someone’s reaction, this is seen as ‘lack of empathy’ – but, when someone who is not on the autistic spectrum fails to understand the reaction of an autistic person, this is seen as a case of ‘autistic people are a puzzle’ and a justification for representing us as a jigsaw puzzle piece.

I’ll just leave that there. I read it here.

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Grading People from Rolling Credit on Vimeo.

A short commentary on the use of the terms “high functioning” and “low functioning” as applied to autistic people

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Just got back from my diagnostic interview at TEACCH. I have forms to fill out and turn in, at which point I will be on the wait list for an official diagnosis. As I “passed” the intake interview round, they agree that I’m almost certainly on the spectrum and want to work out precisely where (useless as that may be in 2 years and the new DSM). Having my mom there was, in a lot of ways, anxiety provoking, but it was also really helpful to have someone corroborate stuff from my childhood, and she remembered things I didn’t or couldn’t. I’ll do the forms over the weekend and take them in Tuesday.

The interviewer was very nice, and didn’t seem bothered at all that I made it through college before I needed help–she said that it’s not unusual with the adult population they see. I knew at that point that this would be alright, that they weren’t misinformed or lazy or ill-equipped. They work with people like me.

I have a job interview tomorrow to work as a youth counsellor for an outreach program. I really hope it ends in a job. Oh, a job. Never thought I’d miss that.

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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.

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Even Blogging Against Disablism Day can’t stop the Kate lyrics.

To paraphrase Stina: either words have meaning or they don’t.

Let me flesh that out for you a little bit. I believe that words are impactful, and that our word choices reflect a combination of our backgrounds, our individual lives, and our education on a given topic. Becoming aware of one’s word choices and actively changing them requires acknolwedgement of privilege and a desire to mitigate that privilege.

There has been talk on Jezebel, a website I usually enjoy, about why words matter. We talk about why it’s not okay to use sexist language every day. There have been discussions about feminism vs womanism (especially in the comments section) and tokenism. Discussions are held about racism regularly. Fat shaming is verboten, and lengthy educational discussions are held by the commentariat regularly. It’s a pretty damn nice place to be out as queer on the internet (though it’s not quite as good about trans issues). We also talk about a specific subset of ableist language, namely eating disorders and body dysmorphia.

All of these are good things. Jezebel is a mainstream, very busy website run by paid bloggers. While there are safe-space websites to discuss these issues (Racialicious and Shapely Prose are both good places to start for racism and sizism, respectively), I think having them discussed in a busy, largely privileged place is helpful and important.

In my experience, a lot of people who are otherwise liberal and well educated don’t know a thing about ableism. Words that are ableist are part of many people’s regular vocabulary, and they never give them a second thought. This BADD, I’d like to maybe put the idea into people’s heads that these words aren’t okay.

There’s a thread of ableism in many Jez posts where other language could and should be used instead. I don’t think it would be fair to call out commenters, so I’m going to limit these references to posts which use ableist language, themselves. This is not a comprehensive list in any way–there are many words I omitted because I only returned one “official” (not commenter-written) result, and I didn’t put myself out looking for these words–if they weren’t in the first couple pages of results, I didn’t bother).

Schizophrenic: 1, 2, 3, 4

Retard/ed: 1, 2, 3, 4, (interestingly, Jez commented on the usage on Vh1 before)

Wheelchair bound: 1*, 2

Lame: 1, 2, 3, 4, 5

Bipolar: 1, 2, 3, (again, to be fair, there’s this, too)

Spaz and derivitives: 1, 2, (this is a very common slur among the commetariat, and I got sick of wading through those results)

Jez (rightfully!) gets upset when words associated with feminism are misused. The editors and commenters won’t stand for the misuse of words like “rape,” or “lesbian,” or “bitch.” It would certainly be nice if they would make this shift as far as ableist language goes, too. Unfortunately, I don’t anticipate that happening any time soon, since responses to noting ableist language, as recently as last week, have been angry and dismissive (to the tune of “Go find someplace else that will let you whine”).

*(A direct quote: “When you think of amputees, dwarves, people with Cerebral palsy, or wheelchair-bound individuals in sexualized situations, it seems wrong, doesn’t it?”)

For further reading:
Bitch Magazine
Feminism 101
FWD/Forward

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.