autistalk

[autistalk]

AutisMonth 2019

Every January is the same refrain, shamelessly stolen from John Darnielle: “I am gonna make it through this year if it kills me.” It's a mantra, a promise as much as it is a plea, though not quite as much as it is a threat. Using the song to kick the new year off is the typical tradition, sure, but I realized last year that I find myself humming it every April as well.

That shouldn't, I suppose, have been as surprising as it was.

April is always a difficult month for me, and I suspect that's going to be more true than ever before this year. After all, it's been rough in general (as evidenced by the lack of communication over the past… sixteen months, wow.), and that's before you factor in the annual hell that is “Autism Awareness Month.” Another thirty days of debating if it's even worth the energy to tell people that their good intentions are only making things worse. Another thirty days of watching autistic voices be ignored, and drowned out in a flood of tripe sentiment, and ignorance masquerading as charity. Thirty days of blue lights, of lies, and of those damned, inescapable puzzles. As I believe the greatest poet of our age, Charles Barkley, once said: April is the cruellest month.

But hey, that's where Darnielle comes in, right? I am gonna make it through this April if it kills me. Lord knows it'll try.

There'll be a lot to talk about over the coming weeks. Plays full of puppets. Power Rangers. Civil rights, intersectionality, allyship. Spooning, and spoon theory. Self-diagnosis, and the struggles of getting a professional diagnosis. Autism Parents, and autistic parents. Stigma, straws, and, of course, stimming. A seemingly endless cavalcade of awful, breaking me down day by day. But, as long as I'm talking, I'll make it through. I'll survive.

I hope you do, too.

Strap back in, folks. It's time for AutisTalk.

[autistalk]

Comorbidity 2: Depression Boogaloo

Comorbidity remains a hell of a drug. Welcome to AutisTalk.

For those who missed the previous article on the topic, or those who need a refresher, comorbidity can basically be boiled down to the presence of multiple medical conditions, which may or may not be related or tied to an initial condition. It's incredibly common with mental illness in general, and almost ubiquitous with Autism Spectrum Disorders specifically. While sensory issues are so common as to be part of the diagnostic criteria, for example, they aren't universal among people on the spectrum, and Sensory Processing Disorders can often be considered their own thing. That being said, many disorders have symptoms that feed into each other, so if you spend time in autistic communities you'll see a lot of people who have similar issues that may not specifically be part of the spectrum, but are so common that they might as well be.

Fairly, simple, right?

So, that's comorbidity in general. Now we're going to jump into some of the really specific stuff, namely the interplay of Autism, anxiety issues, and depression. Believe me, it's an even more fun topic than it sounds, and it's a common combination that's been kicking my keister for most of my life.

Fun fact: statistics from the National Institute of Mental Health show that 6.7% of adults in the United States have had at least one major depressive episode in 2015. While the exact numbers are up for debate, studies show that the number of autistics with depression is even higher, with different studies showing numbers from 12% to 30%. Many reasons are given for this, though one of the largest is personal awareness of how Autism affects one's life. While I'm personally all for autism pride, I'd be lying if I said I didn't completely understand that. My disability does affect almost every aspect of my life, and there are times when that absolutely frustrates the hell out of me. I can appreciate the way my brain approaches problems or retains information, sure, but sometimes constant sensory overload just doesn't seem like a fair trade-off. Hell, sensory issues in and of themselves can and have led me to depressive states, especially when I get stuck in a loop of worrying about them. The fact that every time I go out somewhere new to eat, or have dinner at someone else's house sends me into a spiral of worrying about my sensory needs, the "socially acceptable" way to try to explain that I can't eat onions without feeling the need to scrape my tongue until I can't taste anything, and worrying about the actual location's environment doesn't exactly do wonders for my sense of self-worth.

On that note, and I'm sure you can see where it all starts to feed into each other, there's anxiety. While I haven't been able to find concrete numbers on how many autistics have anxiety issues, speaking anecdotally I have never met anyone on the spectrum without them. Looking logically at the diagnostic criteria for the 'Tism, I'm honestly inclined to believe that anxiety is an intrinsic part of autism. We worry about sensory issues, we worry about social issues, we worry about our interests, we worry about routines... every autistic person I have ever interacted spends a large amount of their time worrying. It's not always the same things, and it's not always to the same extent (It's A Spectrum, after all), but it's always there.

Autism leads to anxiety. Anxiety leads to depression. Depression leads to... well, the Dark Side, probably, but mostly back into anxiety. The epitome of a vicious cycle. Add in external factors for depression and anxiety, and there are times when just existing is completely exhausting.

This terrible trifecta is a common cause of a concept called executive dysfunction. Among other things, executive dysfunction can impact a person’s ability to do things, regardless of their intent. It causes a disconnect with both goal-oriented skills, or the ability to plan, manage time, organize, and accurately assess oneself, as well as self-regulatory skills, such as overall perception, modulation of effort, focus, flexability, memory, or the expression of emotions and responses. With how many of those are already common issues with people on the spectrum, it goes without saying that there’s a lot of overlap there.

Ain’t comorbidity a blast?

As with any discussion of depression, it’s important to note that there are a lot of resources out there if you’re struggling. No matter how it might feel, you aren’t alone. It’s something a lot of people have struggled with, and while it might not get easier quickly, the world doesn’t stay dark forever.

Never stop fighting.

Next time: parenting, the ‘tism, and YOU! which is to say me. If you have any feedback, or there’s any topic you’d like to see us cover, drop a line at tumblr, twitter, or gmail.

[autistalk]

Aut Lang Syne

And I accept that it is time for a change, but not in places like this, with people like these. Welcome back to AutisTalk.

And so long, ‘seventeen! It has been, and I think we can all agree here, a year. The last time AutisTalk was active, we were about to become parents, we were roughly seven hundred political scandals less tired, and...

Yeah, basically “less tired” sums it up.

The eight months since then have been both exhaustive and exhausting, which has affected my writing output fairly significantly. I’m hoping things went better for you guys. The parenting thing is pretty great though! More on that later.

Still, while these are tiring times, it’s important not to get too down. Things are rough. Odds are, it’ll be a couple of years before skies start to get lighter, but we can make our own light until then.

Surround yourselves with loved ones.

Surround yourselves with loved things.

Hell, just surround yourself with love. You’ve made it through one of the shittiest years you’ll likely see. You deserve it.

AutisTalk will return tomorrow. I’ll be damned if we aren’t gonna try to make this year a better one.

Happy new year. Kick some ass.

[autistalk]

Autism Parent 2.0

Quick break in the sensory overload party to discuss something that's been weighing on my mind. Fair warning, we're gonna be getting into some topics that may be slightly more sensitive than usual, specifically the issue of eugenics, and a lot of ableism. If that's not something you're up for at the moment, don't feel like you have to read this. It's uncomfortable for a lot of people, myself included, but this is something I feel the need to talk about.

As I mentioned a few posts back, we here at AutisTalk are expecting a baby. Erin's pretty far along, to the point where the little guy can come any day, and at around 2:45 Wednesday morning, we thought that would be the day. I've come to a lot of Erin's appointments over the course of her pregnancy, and there have been a few different people who asked if a there was a history of mental illness in either of our families. Standard question. I'm always pretty upfront about the fact that I'm autistic, and that always throws them off, but the nurse we got this time was far more rude than the others about it.

"Is there any history of mental illness in either of your families? Y'know, like depression, ADD, Autism..."

"Yeah, I'm Autistic. My brother, dad, aunt, and grandmother are too. Autism doesn't run in my family so much as gallop."

The pause before her "oh," was almost tangible, but was nowhere near as obvious as her disgust. "well. At least you all seem high functioning, I guess? That might make things better, right?"

"Yeah," I replied carefully, "at times." I could tell Erin was more angry than I was, but we weren't in the hospital for me. I smiled at Erin and rolled my eyes, to signify that it wasn't worth it, and I wasn't too bothered.

But the thing is, the more I think about it, the more annoyed I get.

See, for years, we're talking up until the last eighteen months max, I was entirely against having kids. There was a lot of internalized ableism there, though it took me a long time to recognize it as such. For as much as I advocated for other autistics, for as much as I was against the idea of a cure, there was a part of me that didn't think my genes should be passed on. I justified it a handful of different ways: I'd seen how stressful having an autistic kid could be on a relationship. I didn't want a kid to have to go through any of the crap I did. I just didn't think I could be the kind of dad a kid needed, because I was awkward and bad at affection.

But when it came down to it, all of those excuses just came back to anti-autistic crap, and a sort of expectation of self-imposed eugenics instilled in me at an early age. There's a good chance my kid's gonna be on the spectrum, but I'll be part of a whole new generation of "Autism Parents." There are a hell of a lot more resources than when I was growing up (though as few as there are for actual autistics, there are even fewer for autistic parents), and even beyond that I don't think you could find a couple more prepared to raise a child with any disability. We have an absolutely ridiculous amount of experience in that regard, and a relationship that has been built on support and communication from the start, so I think we're pretty good on that front.

So when I'm faced with people who are entirely disgusted that I'm "risking" having kids, my response is torn. First, foremost, and absolutely most intensely, we've got a good old case of the classic "fuck you." More annoyed than angry, at least at first. Then there's a little shame, a brief worry of "what if they're right?" That gets pretty quickly replaced with another "fuck you," this time directed at myself for even entertaining the notion. Then I just get...

Well, honestly, I get tired.

But Erin, who is basically the most amazing person ever, never goes past that first stage, which does wonders for reminding me that it's the right response. I don't always express that to the people who need to hear it (antagonizing nurses when your baby might be coming probably isn't the best idea), but knowing I'm not wrong to feel it is pretty great. And honestly, it kinda kicks me back into shape as well. I can advocate the hell out of other people, and I'd be furious if any other autistic parent-to-be was treated like they should never have kids, but I always forget that I'm worth that passion myself. It doesn't matter who it's directed to, the idea that autistic lives are inherently lesser, that we aren't worth being born, always needs to be fought.  Regardless of whether my son will be on the spectrum, it's my duty as a parent and as a person to fight that fight, and make the future a little less terrible.

AutisTalk will most likely be back in a day or two with that (much less personal) post on auditory sensory issues. I also plan to start recording older posts, and throwing them up as well. If you have any questions, comments, or anything you'd like to see us cover, you can contact us through our inbox, submission page, Twitter, or Gmail. I'd also like to thank everyone who's gotten in touch about our Self-Diagnosis survey, that post will be coming soon! If you still want to submit your experiences, there’s still time on that front.

Finally, posts over the next few weeks may be sporadic. Y'know, incoming tiny human and all that. Thanks for your understanding!

[autistalk]

The New Taste Sensation!

As far as most of the world knows, I have a minor nut allergy.

Nothing fatal or serious, just a bad reaction, so I don't eat them if I can avoid it. Not a "can't be in the room" thing, I just gotta be careful what I eat.

To people who know a little more about Autism, I'm less guarded on that front. "It's a sensory thing," or even just "it's an autism thing. Can't eat certain foods." Same with onions, tomatos, a handful of other things. But a lot of those people have very concrete ideas about disability, and because I don't match their idea of what Autism is, so I'm always prepared to get crap for it. I'm not really autistic, or not trying hard enough, I'm just picky.

Even most people who are actually educated about the 'tism don't get the gory details. As I've said in the past, I'm getting over a lot of internalized issues, and I've never been overly comfortable with explaining how these things affect me. So for the most part, I just underplay it. It doesn't help that sensory overload does different things to different people, and even then it depends on the stimuli. I've seen it described as burning, itching, even just a full-body sense of wrongness.

Me? I'm very sensitive to taste, smell, and oral-tactile input, and while most foods I have issues with only hit one or two of those, peanuts hit all three. The result is really difficult to describe, and the closest analogy I can think of is someone very carefully and methodically slicing layers off the top of my tongue. Odd, very specific description, but there it is. Typically any time I eat some by mistake will end with me scrubbing my tongue for the next fifteen minutes or so, and using mouthwash until I can't swish anymore. Not the most fun situation to be in!

That being said, it's worse when I'm not at home, because there's rarely anything I can do to counteract it. Typically my method for solving overload is to fight fire with fire- overload that same sense with something I have more control over. I've got songs for auditory issues, stretches for physical, and... well, not much for physical. But taste is a tough thing to be prepared for, and tough to fight depending on the situation. It's not like there are stim toys for your tastebuds, after all.

At this point though, I'm careful enough about what I eat that I can avoid most issues, but every once in a while I'll risk new things. While I've had okay luck so far, and most of those risks are extensively thought out beforehand, I've absolutely been flying without a net, and one of these days it's gonna bite me back. Is it gonna be at home, in public, at work... who knows? So, I've realized, I need a backup plan.

Most of my favorite foods won't be much use in that regard. They're either too bland to overpower anything else, or too impractical to bring with me. That cuts out a hell of a lot of options, and after a lot of thought I can only think of two solutions (or four, depending on how you count): mint and cinnamon.

Both would work in theory, in the form of peppermints/cinnamon discs and gum. Easily transported, inconspicuous, and very bold flavors, along with different oral-tactile stimulations. Gum is a tactile smorgasboard all on its own, though I try to avoid it. Mint stuff tends to have those ridiculous flavor crystals as well, which would probably be fairly distracting, and the crunch of hard candy would give me something else to focus on.

Trouble is, sitting around and planning how to counteract a sensory overload is all well and good, but there's no guarantee it'd work! If it doesn't, then I'd be up the creek without a paddle, and one of the few things worse than a sensory meltdown is the feeling of trying and failing to fix one. Not exactly an ideal situation. Still, thinking things through makes me less anxious, and it's always good to have contingencies. If it does work, hey! That's another coping mechanism to make the world a little less risky!

So, for those of you on the spectrum, how do you handle an overload due to food? Got any tricks, or do you just ride it out? You can let us know through our inbox, submission page, gmail, or Twitter! I'm also still looking for more responses on the self-diagnosis survey from last week. If you self-diagnosed and are willing to share your experience, or know someone who might, please check it out!

Finally, if you enjoyed this post, or any other AutisTalk content, I'd appreciate it if you could share it. We're still starting out, and trying to increase our audience. Either way, thanks for checking us out! Next time, assuming everything goes as planned, we'll be continuing the sensory overload theme, and discussing auditory overload.

[autistalk]

Self-Diagnosis survey

Hey folks, I’m gonna be working on a big thing about self-diagnosis, and I’d appreciate your input! If you self-diagnosed and are interested in putting your experience out there (anonymously, if you so choose), hit me up! I’m looking for any information you’re willing to give, but specifically the following:

Age when you Self-DXed

What made you consider ASD (Autism Spectrum Disorders)

How others respond, if you choose to tell them, including those in the Autistic community

If you feel welcome to speak about your experiences/feel welcomed as part of the Autistic community

Was Self-DX a beneficial discovery for you? If so, how did it help?

If you’d like to help us out here, you can reach us through the ask, submit, or the autistalk gmail. Rest assured, I’m willing to keep your identity anonymous if you’d like. I realize self diagnosis is a controversial topic in the community, so I understand entirely if you’d prefer not to get angry people swarming you. 

 Thanks! 

[autistalk]

Comorbidity: Awesome word, less awesome thing.

Comorbidity is a hell of a drug. I'm Corey, and this is Autistalk.

In a previous post I used the term "an oroborus of bullshit," and while it was completely accurate in that context, I'm slightly disappointed I didn't save it for this one. It is, after all, pretty much a perfect definition of comorbidity. But if we're trying to be slightly more appropriate about things, comorbdity is simply the presence of multiple conditions. That's it! Fairly simple, right? But comorbodity is pretty much the bane of my existence.

While these conditions don't have to be related, more often than not they feed into each other. Anxiety, autism, depression, ADHD, OCPD... not the most cheerful of combinations, but one I've seen far too often. See, the thing is that no mental illness exists in a vacuum, and a lot of them tend to have issues that are similar, or at the very least, overlap. I get anxious because I'm depressed, and I get more depressed because I'm anxious. "Vicious cycle" doesn't even begin to cover it. But, for as much of a pain as comorbidity is, being aware of it can be quite helpful when it comes to figuring out issues.

See, for a lot of people on the spectrum (and for a lot of disabled people in general), they get the one diagnosis, and that's it. You don't need another one, because all of your problems can be wrapped up in one little box. Slap a puzzle piece ribbon on it, and you're done, right? Unfortunately, that myopic point of view can do far more harm than good.

My younger brother was diagnosed at a very early age, but when I was younger knowledge of Autism wasn't anywhere near as widespread. I was "smart but lazy," "a bad kid," all that jazz. It didn't help that I tested in the 99th percentile, or that my survival responses to Autism typically involved overcorrecting in an effort to seem "normal." There was nothing to diagnose that couldn't be solved with discipline.

I was diagnosed with ADD when I was around 10 or 11, and that lasted about eight months. A long-term bad reaction to Adderall and unwillingness to put me on Ritalin had people exploring other diagnoses, and eventually I was tested for Aspergers. That diagnosis fit almost all of my symptoms, and made sense with my family's history, so that was pretty much it. I assumed the ADD was just a misdiagnosis, and spent the next thirteen years referring to it as one. No one bothered correcting me there, so why would I think any differently? Besides, you needed meds for ADD, amd clearly the meds didn't work on me.

But I've always had issues with my attention span. There's only so much that can be explained by the autistic tendency to hyperfocus. Frankly, I should have been clued in all of the times I stopped being interested in a special interest in order to hyperfocus on something utterly trivial, like the number of bumps in my ceiling, or loops in my bedroom rug. Just one of those weird 'tism quirks, or at least that's what I told myself.

It wasn't until I had to get a copy of my medical records when I was 22 that I discovered I was still technically diagnosed with ADD. It threw me off, because I had spent so long accepting one thing as part of my life, and learning to be okay with that, while assuming that another thing had nothing to do with me!  Autism had become a large part of my self-identity, and I'd spent 11 years coming to terms with that. I researched the hell out of it, and learned as much as I could about what my condition entailed, coping mechanisms, and what sort of things I could expect. Obviously, all the answers weren't out there- It's A Spectrum (TM), and Autism presents uniquely to each person. When I couldn't find answers, or the ones I found didn't work, I figured it was just because I was unlucky with a condition that is even now not fully understood. It didn't even occur to me that I had only been asking part of the question.

Most of my coping mechanisms still relate specifically to Autism. While there's no real "main diagnosis" there, it's still the one I tend to mentally default to, in large part because of the massive overlap Autism has with many other mental illnesses. But these days I'm learning more about the other stuff I have going on, and I'm finding new techniques that are really helping me out. If someone had sat me down when I was eleven and said "Hey, you have this, but you also have this, and here's how that's gonna suck," I'd probably have been a lot better adjusted. If you're young and on the spectrum, it's worth taking a look at your habits and behaviors to see if there might be something else going on. Autism in particular has a pretty high comorbidity rate, so it definitely doesn't hurt to think about it. If you're in a position where you have a doctor you trust, consider talking to them about it! If not, maybe do some research on your own. A lot of people only put stock in professional diagnoses, but it's worth noting that most of those only come about because you or someone close to you notices things. You're not gonna go in for a physical and have them be "oh, by the way, looks like you've got some depression right around there" while they're checking your tonsils. If you already have an idea, or list of things going on, it can help you and your doctor to narrow things down.

So, readers, what are your thoughts on comorbidity? Do you have multiple conditions? I'm willing to bet that almost all of you have a good ol' case of Sensory Processing Disorder - believe it or not, while that's so common in Autistic folks it's often thought of as a given, it's not universal! If you have any feedback, or anything you'd like AutisTalk to cover, drop us a line in the ask box, submission page, Twitter, or gMail. 

[autistalk]

With fanfiction I wish I could take it or leave it, but that's been a very strong special interest for long enough that I'm pretty sure I'm stuck with it. I'm compelled to read everything in smaller fandoms that are even a little interesting to me. Sometimes this is very rewarding. Sometimes this is the opposite of rewarding.

Oh jeez, do I feel your pain. I’ve been out of that scene for a while now, but there were times when I would subject myself to some truly terrible stuff. Not too long ago (to the extent that I still have them in my tabs, taunting me), I actually went out and tracked down two fics I used to love back in my baby fandom days out of curiosity, and lemme tell ya, I just know rereading them is gonna be a mistake for so many reasons. 

Having a special interest be fanfiction about a special interest is, in the words of Shakespeare himself, some next level shit.

[autistalk]

rebirthcanal submitted:The puzzle piece grosses me out because of it’s association to Autism Speaks + infantilization.

How about gears? …symbolizing the complexity of our situations, the hyperconnectivity of our brains, the logic we often can’t function without, plus unlike the puzzle piece it’s something that can apply to both children and adults. Something that doesn’t need to be fixed, but still needs appropriate care to run smoothly. :)

I absolutely love the idea of using gears! I hadn’t considered it before, but it’s honestly an amazing fit.

[autistalk]

Special Interests: I can show you my favorite... obsession.

I am thou, and thou art... well, thou art-istalk, I suppose. It's been a rough week for my productivity. Work has been taking a lot out of me, my house is nowhere near ready for an incoming baby, and to top it all off, I've been fighting the flu for so many days I've stopped counting. What's more, the game that I've been playing in my "me time" has finally given up all pretenses of not consuming my attention, and I realized on the third straight day of staying up past midnight that I've fallen neck deep into yet another special interest. In some ways, that's convenient- this week's post was always going to be about special interests, and I spent most of last Thursday (a date completely suitable for discussing obsessions) writing something that'll never see the light of day. The article was much more about how I handled interests in the past, but hey, why not dig right the hell in and see how things affect me as they affect me, right? Hard-hitting journalism, and all that. First things first, special interests. They are common among people on the spectrum, almost to the point of ubiquitousness, though terminology differs. I grew up using "obsession," though I can see how talking about a "special interest" to people who aren't in the know can be less embarrassing. Either way, it's a fairly self-evident concept. Autistics tend to latch onto things, be it media, facts, abstract concepts, just about anything, and we latch on hard. Occasionally, these things tend to be all-consuming, and while there isn't anything that all autistics will gravitate to (it is, after all, a spectrum), there are a handful that are fairly common. Trains, schedules, space, and, honest to god, Pokemon, are all things I've seen a lot of people obsess over, and I'm guilty of more than one of those myself. While our interests are never guaranteed, I've found that in my own case I can tend to predict if something will be. There have been times when that's unbelievably useful, if only so I can cut something off in the beginning stages before I'm sitting on an encyclopedia's worth of factoids and trivia for like the history of spearmint flavored bubblegum or something. Other times, I don't get so lucky. I don't begrudge my younger self for getting hooked on 'Onix back in the '90's, or for the subsequent twenty years of learning way more about Pokemon than anyone outside of Game Freak needs to be. Don't get me wrong, there are things I'd like to know more than the ins and outs of EV Training, and I'm sure that whatever alternate universe version of myself took an interest in the stock market instead is having a great time, but I'm the sum of my experiences. As I'm growing to like and accept myself more, that means accepting that the things I enjoy are part of my mental make-up! I do totally begrudge the knowledge of X-Men family dynamics, mind you, but that's a story for another blog. So, how exactly can I tell if something is a special interest, rather than just something I enjoy? For one thing, I don't actually like  a good chunk of the things my brain has decided to fixate on over the years. Take, for instance, Marvel's Ultimate line. I enjoyed one book in the line, but because so much of it was connected, I felt an overwhelming need to read all of it. It didn't matter that I thought most of it was terrible, I had to know. That's one of the big things, and the reason I'm more likely to call it an obsession. I'm sorry, but there's no other way to describe subjecting yourself to Ultimatum more than once. I managed to break that particular habit around mid-2012, but there's still been the nagging sensation ever since then that I only have three more years worth of comics to read before I can Be Done. But, of course, we all know the 'Tism can never be that simple. I couldn't just pick up where I left off, no. I'd have to reread everything up to the point where I stopped before moving on, and we're not talking a large period of time here. Time has shown pretty conclusively that if I get distracted in the middle of one obsession by another one, I need to restart the first before I can continue on with it. Attempting to reread Homestuck is rough enough, and none of that was illustrated by David Finch. Fifteen years, 50 books, depending how you're counting, hundreds of issues... all because I liked one book. Right now, at least, my obsession is kicking my butt. I’ve listened to the same five songs a few dozen times each over the past week. It’s legitimately stressing me out to not jump into the game’s tag and scour every bit of knowledge I can find, at least not before I’ve finished it. On the plus side, that just means this particular thing has an endpoint. It'll take me a while to get there, and after that I'll revert to one of my usuals, but those are at least a lot more passive, if only because of how long they've been a part of my life. These days I don't need to know everything about Pokemon- I dropped the show well over a decade ago, and the card game even longer, but the advent of downloadable midnight releases means I spend the day before a mainline game is released unable to focus on most other things. I hate it, honestly, I've got other priorities and I know I'm not gonna miss anything, but knowing that didn't make me able to concentrate. Luckily, most of the things I'm focused on are released on a schedule, so if it's something I know will screw up my day, I can plan accordingly. Honestly, it's the lack of that knowledge that has me most bitter about Hiveswap (though there are plenty of other reasons I'm always happy to go on about)! That's what most of the little control over my disability I have comes down to: foresight, pattern recognition, and anxiety-induced overpreparedness. I'm like Batman, but slightly better at social cues. More than anything though, the biggest thing about my special interests is that I just cannot shut up about them once I get going. "Info-dumping" is the most commonly used term among the autistic community here, and while I've gotten very good at not talking about things at every opportunity (no matter how much I think about them), once I do get started, it's difficult to stop. Hell, there's been more than one time I've considered starting a podcast just to info-dump about things I'm into and get it all out of my system for a while! That was one of the initial concepts for AutisTalk, back when it was gonna be a two-part product, and it's something I've thought about going back to a handful of times. I got lucky, and my wife is always willing to hear me talk about the things that interest me, but sometimes I just feel far less self-conscious talking to a microphone, y'know? If there are people around you who are happy to listen to you talk about the things you love, let them know how great they are. People like that are rare, and they should be appreciated! So, readers on the spectrum, what sort of interests do you have? Are there any that you've fallen out of, or any that you go back to time and again? Can you just tell when you're gonna be into something? You can let us know through the AutisTalk inbox, submission box, Twitter, or gMail! As always, if you have any feedback, or would like to see us cover a topic, please tell us! In the meantime, I'm Corey, and this  is me making a post and immediately going back to Persona. See you next time!

[autistalk]

Slight delay.

This week's post is going to be slightly late, due to a combination of work, family, and my untimely acquisition of what appears to be the stomach flu. Should be up tomorrow, Wednesday at the latest. Sorry for the wait!

[autistalk]

This reminds me of a puzzle...

A true gentleman leaves no puzzle unsolved! I'm Corey, and this is AutisTalk.

If you have any knowledge of Autism whatsoever, odds are that you've seen some sort of puzzle pieces associated with the condition. Shirts. Bumper stickers. Ribbons. Parent's tattoos, god forbid. The message is clear, and the message is ubiquitous: Autism is a puzzle.

It makes sense, from a certain cynical standpoint. It's easier to raise awareness for something if you have something snappy to associate it with, and more importantly, it's easier to get people to donate to you with a logo. If your only experience with Autism is outside of the spectrum, puzzle pieces might make for a decent metaphor, at least for as long as you don't look past the superficial. In my experience, the vast majority of people who rock the puzzle ribbon truly think they're supporting the cause, and legitimately don't see any issue with it. You might be able to convince someone not to support Autism Speaks, but it's honestly much harder to get them to drop the puzzle metaphor. So, let's try to break down exactly why so many autistic people are uncomfortable with the theme.

First things first, History. Puzzle pieces were first used to represent Autistic people back in 1963, by Gerald Gasson a parent and member of the National Autistic Society, known in those days as the Autistic Children's Aid Society. Their logo, for a while, was a single puzzle piece with a crying child inside of it, to symbolize how it was a puzzling condition, and how children suffered because of it. That's not purposeful misinterpretation, that's the actual reasoning. 

"The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap."-Helen Green Allison

From the early days (not that Autism is something that only just started showing up, but we'll get into that later), autistic people have been defined by our parents, and defined in a way that emphasizes how sad we are and how difficult we are to understand. It only goes downhill from here, folks. Now, a common trait of autistic people is difficulty with communicating. It's not 100% universal, because nothing about the autistic experience is universal, but it's relatively common. But honestly, most people have difficulty communicating or being understood, regardless of whether or not they're on the spectrum. Everyone has to make an effort to understand others, but some people just require a little more effort. Reducing autistics to enigmas, or to perpetually suffering children, shows less about us than it does the people who'd rather shrug us off as too much effort to understand. 

More darkly, although not always intentionally, the puzzle implies that Autistics, and Autism in general, require a solution. Historically, that's not an attitude that plays well with marginalized people, and disabled people are no exception. Beatings. Isolation. Torture under the guise of therapy. Sterilizations. Murder.  Death-by-exorcism. And these are all "solutions" for Autism that still happen. Does the puzzle piece directly cause all of that? Of course not; I doubt any perpetrators of this kind of violence even consciously think about what symbol represents the disability. But unfortunately, nothing exists in a vacuum, and these issues all tend to feed into each other. The resulting oroborus of bullshit has done no favors for autistic people.

These days, of course, one would be hard-pressed to find the original symbol. No, we've moved on, to the simple blue puzzle piece of Autism Speaks, or to the ever ubiquitous rainbow puzzle ribbon. And while there is slight progess there (at least they realized the crying child was slightly too condescending), they still have most of the same issues. We still require a solution, and we're still too much trouble to understand. Society at large hasn't quite moves away from those conceptions yet, and while I'd like to think we will, I'm not holding my breath. 

So, if we're avoiding the puzzle metaphor, what alternatives are there? There are a handful of different opinions, such as a rainbow infinity symbol, those who think we don't need any sort of emblem, and even those who want to reclaim the puzzle. Personally, I'm not in that last camp, but other than that I'm not much bothered. The rainbow infinity symbol, typically referred to as the Neurodivergency  symbol, is picking up a lot of steam in the autistic community, though I personally find it to be inaccurate. If we need a symbol, using one that inherently covers all atypical neurotypes sort of defeats the purpose, as far as I'm concerned. Still, I'm far more willing to be defined by that than I am the puzzle, so I suppose I shouldn't complain. All that being said, it's important to recognize that different people prefer to label themselves in different ways. Autistics who like the puzzle piece are not "worse" than those of us who don't, and identity politics are tricky. Many people honestly haven't considered the issues with the symbol, just as many people have, and decide that they're still okay with it! That's cool too, just keep in mind that your fellow autistics might not be comfortable with it. 

As for non-autistic readers looking to show support, the best way to do that is to communicate with the autistic individuals in your life, if you are able to, and see how they feel. True support is to speak with us, instead of simply deciding what's best. We'll often know that you have the best intentions at heart, but hey, you know what they say about the road to hell.

Finally, for anyone who's reading this, I'm interested to hear your stance! What are your thoughts on the puzzle piece? If you're not a fan, what would you propose? The AutisTalk inbox is always open for feedback, as is the submission page for longer thoughts. You can also reach us on Gmail, and Twitter on those rare occasions when I remember that account exists.  If there are any topics you'd like to see covered, feel free to let us know!

[autistalk]

AutisMonth: Don’t Call it a Comeback.

Holy time-skip, Batman! If I didn't know any better, I'd say it's time for AutisTalk! It's been quite some time since our last update. As a matter of fact, the last time was 100 days before Erin and I got married, and now we're a week out from our seven month anniversary, with a kid on the way! We've both been slightly busy, as I'm sure you can imagine, and writing hasn't been a priority for me. Then again, that's not entirely true. It's absolutely been something I want to do, but there are times in any autistic's life where "I want to" and "I am able to" don't quite mesh up. But this is April (a hellish landscape that I have taken to calling "AutisMonth"), and lord knows there is nothing that can get me in the ranting mood quite like scrolling down my Facebook feed and seeing hordes of puzzle pieces and "light it up blue" posts from well-meaning jackasses. Just as importantly, I've finally gotten a phone that doesn't start crying itself to sleep when I try to open anything more intensive than Solitaire, and typing straight on Evernote when I write is a hell of a lot fewer steps to fail on than starting to write in one of seven notebooks that I'll inevitably lose, before starting to type it up weeks later and getting horrendously distracted in the process. That's the theory, anyway. We'll see how it translates to quality; if nothing else it's a lot easier on my end. But before we start jumping into meaty topics like comorbidity, spoon theory, and the model minority, there's something I want to get off my chest. The world has never been a particularly safe place for disabled individuals. The US was making slow progress for a while, but I don't feel it's unfair to say that with recent political events, things are going to start taking huge steps backward. There's a common cliche (almost as common as that phrase was redundant) that states that things have to get worse before they get better. I'm personally not super into that philosophy, and I'm rarely prone to optimism. But one of the biggest issues facing the disabled community has always been ignorance, either from a lack of information, or an unwillingness to listen. Can't fix the latter, but you can be damn sure I'm going to try to get as much information out there as possible. It would be disingenuous to say that there are going to be times when AutisTalk is going to get political. Being disabled and existing is inherently a political statement. Speaking up, hell, any kind of advocacy, is even more so. That might make people uncomfortable, but hey, is it that much worse than a society that actively refuses to accommodate basic medical needs while treating you and people like you like second-class citizens at best? You might be uncomfortable, but trust me: we're furious. For those of you who have forgotten over the past ten months, for those of you who are only just hearing this: I'm Corey. This is AutisTalk. Welcome back.

[autistalk]

Dating and What Not Summary

Sorry for the lack of posts

People are ignorant and rude

If you are able try to correct their ignorance

Communication, honesty, and trust are hugely important in relationships

[autistalk]

Dating and What Not

I'm Erin...we're sorry for the lack of posts and this is AutisTalk. Yesterday Corey and I celebrated the 100 days until our wedding mark, with that fast approaching I wanted to take a moment and talk a little about dating and disabilities. There is a huge stigma around dating people with certain disabilities. There are some that society views as ok to date, and others still that people are regarded as saints for dating because we all know you date a disability not a person (insert sarcastic eye roll). In my experience I've found most people look at me like I'm taking advantage of Corey when they find out he's autistic. Even people who have met him and seen us together. I also get statements like “But Autistic people don't talk to people.” and “Autistic people can't express feelings.” Both of which show the person blatant lack of knowledge on the topic, but hey. Usually when meant with this I go into a very abridged version of how and why they are wrong. Sometimes if they are particularly rude I roll my eyes and walk away thinking “you're an idiot.” because lets be real it gets tiring explaining I'm not forcing Corey to marry me. After a while you come to expect this as the only response, and are surprised by the exception. For example my brother's response was “Ok, what is that, and what does it mean?” I was honestly caught off guard and was prepared to launch into my typical response, and had to take a minute to regroup. My goal with this post is to help break this stigma, but also give some advice for how to deal with the people who think you're terrible and on maintaining a relationship. Lets first start with dealing with people. When someone says something ignorant or gives me that look (I'm sure you all know what look I'm talking about). I tell myself to take a breath and then I decide weather or not I can handle explaining things or not. If I can't I sign and walk away. However, I do try to explain things the majority of the time. I typically start by explaining Autism is a spectrum and everyone is different. Then I address what they said specifically, and sometimes give examples. Now I should stress I do the talking when I'm alone, but Corey and I have discussed this and he is comfortable with me doing so. However, if Corey is with me I step back and let him take lead unless he asks me to. Luckily for us we are pretty much past this point because we have been together for 3 years and everyone close to us already knows. But it did happen in the beginning. As for maintaining a healthy relationship honesty is key. Corey and I made a deal from day one we'd be as honest as possible about our different disabilities and how they manifest. But, we'd also be honest about when we didn't want to talk about it or when we needed space. At first this was hard because we weren't use to being that open with others, but it made us so much stronger as a couple. The other thing that has helped is not questioning each other. For example if I asked Corey to wash his hands he said ok and did it instead of saying why I didn't touch anything dirty. He understood and excepted that my OCD fears weren't always rational, but I needed him to do what I asked so I could feel better. Now I'm not saying we didn't ask question about each others triggers, needs, and ways we could help, but we had an understanding that we'd never refuse or question the help needed. Asking question is an important part of being honest and open. Through this communication and understanding we've developed our own language of sorts. He knows when I give him a look it means he did something that's setting me off and vice versa. Discussing our expectations and needs before we made the decision to be a couple has made our relationship stronger. It helped us avoid fighting, irritation, jealousy, and a lot of panic attacks and sensory issues. I tried to keep this brief, but we are both willing to answer any specific question and have more discussion on this topic in the future if you'd be interested.

[autistalk]

Autistic Discussion and Language (Info Bite)

This time: Still Corey. Still very much stressing the Autism thing. Terms I will use, and terms I won’t. Anger! Probably justified? Next time: Comorbidity! Fewer delays! 

[autistalk]

Autistic Discussion and Language

In raging din, in hush profound. I'm Corey, and this is AutisTalk.

But first, a disclaimer.  Apologies for the wait- I've been hesitant to publish this particular piece, because I grew far more angry while writing than I was comfortable with. There's nothing wrong with that, per se, it's not the tone I want to take with AutisTalk. While coming from a place of anger doesn't make one's points less valid, I'd be lying if I said that people don't like to pretend it does. On a similar note, I'm striving to keep this project family friendly and free of profanity, unless I feel it's warranted. This post will contain an exception to that. Whoops. I won't make a habit of it.

Communication is an issue across the spectrum. Whether an individual is nonverbal or overly verbal, the vast majority of us tend to have problems getting things across as well as we'd like to. It doesn't help that even among the autistic community there isn't a clear consensus on language and meaning. Previously, for example, I've discussed how the word “stim” had entirely different meanings depending on context. There's an issue of throwing jargon around without properly explaining it, and due to my background I'm pretty guilty of that. So today, we're going to clear some of it up.

Where better to start than the root of it all: just what exactly is Autism? The answer is less clear than you might expect, which… is probably going to be a trend when it comes to this sort of thing. In all honesty, we don't actually know that much about Autism. It's a disorder (not a disease) that commonly presents through sensory issues, repetitive behaviors or interests, socialization difficulties, and problems with communication. We know it affects how the nerves and synapses in our brain connect, which alters how we process information, though we aren't entirely clear how. We don't know what causes it, though it's likely hereditary, and has absolutely nothing to do with vaccinations or bad parenting. Autism is a spectrum disorder, which means that a large amount of traits fall under its umbrella, and not everyone on the spectrum will share the same traits. Previously a larger group of disabilities were part of the spectrum, bur with the recent DSM, they've been largely fazed out and folded into the more generic “Autism Spectrum Disorder.” Despite that, a lot of people who were diagnosed prior to the change will continue to refer to their prior diagnosis.

Because the 'Tism affects people so differently, labels like “high functioning” and “low functioning” are often used, mainly to indicate an individual's ability to pass for neurotypical, and create artificial dividers. The vast majority of people on the spectrum resent these terms, viewing them as reductive and patronizing. I'm inclined to agree, and I've had that argument with more than one teacher and coworker. From a caregiver perspective, I've seen the argument that functioning labels provide quick summaries of what to expect. Frankly, I'd much rather take the time to have an actual discussion about the individual than just be given a vague and demeaning label. It's far more useful to be told “hey, so-and-so is sensitive to these sounds, and is normally nonverbal, but has a talker and is fluent in ASL” than “oh, so-and-so is pretty low functioning.” Likewise, “high functioning” tells me nothing compared to “they're verbal, but get overstimulated when faced with these topics, and is pretty sensitive to textures.”

What's more, these labels are often used to deny the severity of an individual's disability. People say I'm high functioning, and then assume that all of my issues are simply laziness, or not that bad. The fact that I can talk and have forcibly trained myself to mostly stim in ways that people rarely question doesn't change the fact that I have severe sensory processing issues, the fact that making eye contact makes me physically uncomfortable, or any of the other dozens of symptoms I have. My struggles shouldn't be invalidated because people view me as “high functioning,” any more than the triumphs of someone who would be viewed as “low functioning.” Convenience is no excuse to reduce people down to how well they assimilate, and needless to say I will not be using these terms.

Another subject that's caused me no end of strife is “person first language.” I touched briefly on it in AutisTalk's initial post, but for those who may be blissfully unaware, it's the practice of always referencing a person's disability after stressing the fact that they're a person. Never “autistic,” always “person with Autism.” In theory, it's done to stress that a disabled individual isn't defined by their disability, and is, shock of all shocks, a person. Like many, many practices, person first language sounds well intentioned in theory, but ends up doing nothing but make abled people feel like they're nice and considerate, while defeating it's own purpose with a truly spectacular amount of ironic dehumanization. After all, stressing the person before the disability just shows that the speaker views the disability as inherently less human. Why else would they feel the need to make the distinction? I'm an autistic person, not a person give or take some autism. My disability in no way makes me less of a person, or less deserving of respect.

See, here's the thing. In my childcare experience, I've consistently had supervisors and colleagues stress the importance of person-first language. In my experience as, y'know, a disabled person with disabled friends, I've exclusively seen the phrasing treated with annoyance at best, and outright outrage at worst. When it comes down to it, disabilities are an intrinsic part of our identities. People are the sum of their experiences, after all, and anyone who claims disabilities don't affect how someone experience life is either full of it, or fundamentally misunderstands what a disability is. As much as abled people like to throw around the adage “the only disability in life is a bad attitude,” it's a steaming load of trite, ego-stroking, and most of all patronizing crap.It's difficult not to have a bad attitude (and on that note, way to throw depression and countless other Emotional-Behavioral disorders under the bus!) when one constantly had to hear individuals without disabilities define what it is to be disabled.

I am autistic. I have issues in social situations, I have sensory processing problems, my coordination is so bad that I probably shouldn't drive, which is a moot point seeing as my spatial awareness is so flawed that I could probably get lost walking in a straight line. That's not even touching on the wonderful world of comorbidity (a world which we shall be touching soon, make no mistake). Stressing that I'm “a person who just so happens to have autism” not only trivializes the struggles I face every day, it implies that my worth as a person has to be stressed, because my disability would otherwise put it in question.

Bluntly, fuck that noise.

Moving on to a slightly less controversial topic, the terms “neurotypical” and “non-autistic” will be thrown around fairly often. Strictly speaking, “neurotypical” is broader than “non-autistic,” and applies to anyone without mental disabilities or illnesses, also known as neurodivergence. For most of my life, I'd only seen it used in “non-autistic” contexts, so every once in a while, I might slip up and use it like that. For the most part though, I like “non-autistic,” if only because it flips around the inherent othering in topics like this.

The term “allistic” has recently come into use as “non-autistic.” Personally, I can't stand it, and won't use it. See, autism's etymology basically boils down to “self-ism,” which reinforces a lot of harmful stereotypes and misconceptions, but it's not like I can avoid using that term. I can however, absolutely refuse to refer to everyone without autism as a neologism that boils down to “others-ism.” Autistics aren't inherently selfish, and non-autistics aren't inherently selfless.

Finally, there's the “theory of mind,” which in contexts related to autism, refers to the idea that autistics can't put themselves in other people's shoes. Now, this is pretty obviously just more harmful and reductive stereotyping, but you'll see a lot of people preach it like the gospel. I shouldn't even have to refute the “fact” that autistic people are not as a whole incapable of empathy, but hey, here we are, and here I am. Just don't even start with me on theory of mind. It's never a good idea. Use some of that good ol' inherent non-autistic empathy and take a second to realize “hey, maybe I shouldn't imply the person I'm talking to is an inherently selfish prick.”

Next time: Comorbidity? Maybe? Probably.