AutisTalk

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.

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!

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.

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.”