I have a confession to make that I’m sure is completely shocking to everyone reading this (/s). I’m not very good at socializing. It’s a struggle, it really is. I don’t know how to make plans with people, I don’t know how to socialize in groups (do you have any idea how COMPLICATED group dynamics are? Because they are VERY), I don’t know how to initiate conversation, and it is immensely difficult for me to connect with people. There are probably other things that I’m not thinking of because I just don’t even know what they are. What even is socializing?
I mean, unlike the incredibly wrong stereotype of all autistic people not caring about or wanting friendships or connections with other people, I do WANT them. I just don’t know how to do them or how to form them, and I am sufficiently introverted that I can still find a lot of joy in me-time.
ANYWAY. That’s not quite the point of this post. The point is that those things have, in the past, led me to have some pretty flawed ideas about how to do human interaction. It was actually a pretty straightforward concept that I maintained for years until I started to realize just how messed up it was: that if someone has something to say to me, they’ll say it; and if someone wants to know something from me, they’ll ask.
Just to be totally clear – this is a TERRIBLE way to do human interaction. Absolutely awful. It’s terrible for the exact same reason that it was appealing to me – it puts all responsibility for literally any interaction on other people. As a person who just doesn’t know how to do these things, being able to justify to myself just not doing it and making other people responsible for all of my conversations was pretty nice. I was and am fortunate enough that I have people around me who have been willing to do that work to reach out to me to form connections, and I am deeply appreciative of that.
Still, it’s not fair to other people to place all the work on their shoulders. Because even for NTs, it IS work. It’s work they happen to be better at than I am, but it’s still work.
As my friends and I slowly emerge from over a year of tiny social bubbles, I have decided that I want to try to change the way I approach interactions and be more proactive. And I gotta say – it is NOT being easy. Not only have I always been exceptionally bad at this, but my hard-won social skills have gotten quite rusty after sitting barely-used for over a year. It helps a little bit that I am extremely open about being autistic and my limitations, but still. It’s difficult.
Difficult or not, though, it matters. It matters a LOT. Taking it on myself to reach out to people shows that I care. Passivity may not be indifference, but it can be really hard to tell the difference from the outside, and I appreciate that. The end result? A roughly 40 year old dude metaphorically stumbling around trying to figure this out.
Still, I think it’s worth it. I’m still learning. I hope to never stop learning. The learning process can be awkward and difficult and even embarrassing sometimes, but that’s no reason to stop doing it. All I can do is my best, but I can make sure my best improves over time.
Passivity in socializing is tough to give up, but it really is a problem. So I’m working on it.
Now I’d like to hear from you – what ways are you proactive in your socializing? What Things do you Do to maintain your connections with people? I LOVE comments, and the more ideas out there, the more ideas we all have to try!
I want to talk a little bit about a thing that I really, truly struggle with. I live in the US, which is an extremely capitalistic society. Here in the US, your value is strongly equated to your income, in some sectors to the point that your income determines your morality (rich people are good regardless of what they do; poor people are bad regardless of what they do). Disability is often seen as a moral failing, and being too disabled to work is seen as either shameful or lazy.
I have been very open on my blog about the fact that I do not have a job or do work for an income, as well as the fact that any time I try to do so I end up profoundly Not Ok. What I am less open about is the fact that I feel incredibly deep shame around that fact. Nor has everyone around me been understanding of my difficulties in work. I’ve had second wave feminists tell me (back when I was presenting as a woman) that I should get a job Because Feminism with clearly no understanding of why I wasn’t working. I once had a therapist spend months trying to push me to get a job until she saw me being Not Ok and changed her mind.
Now, intellectually I don’t at all think that income means worth. I believe that everyone has worth, just by existing. I believe that everyone deserves food to eat, access to healthcare, and a reliable place to sleep and bathe regardless of who they are or how much money they have access to. I believe the role of society is to support everyone. I believe that there are many ways to contribute to society that don’t necessarily involve generating an income. In fact, given that “generating an income” relies on producing something that other people are willing to pay for, I’d say that there are MANY ways to help and contribute to society that don’t involve getting paid.
Yet despite these beliefs of mine, I have strongly internalized the idea that worth comes from generating income, which means that since I don’t generate income I must not have worth. I am constantly bombarded by the message that I need to work for money to have value as a human being – both from society at large and from people I am or have been close to (not everyone I’ve been close to, but definitely some of them). I frequently wonder what kind of income work I could do that wouldn’t leave me Not Ok. Something like working all by myself in some dusty basement doing archival work or something (ok, that one is less a practical idea and more a fantasy. ANYWAY).
I wish I had strong words of wisdom I could put out there for other people who feel like I do, but I don’t. All I have is 1) the firm belief that we all deserve to live, and thus deserve the things needed to live, regardless of our ability to produce an income, and 2) an internalized belief that because I do not generate an income I have less value than the people around me. It’s rough.
I’ve been really struggling for the past few weeks to get my brain in the zone for writing. There’s actually a pretty simple reason why – I’m getting surgery soon! And I’ve been REALLY preoccupied with All The Things that happen in the weeks preceding surgery. Sooo… I decided I would just talk about that. Want to get to know me better? Or possibly learn about what’s involved in getting a hysterectomy? Then read on.
Content Warning for medical talk.
Right. So I’m getting a hysterectomy – which is to say, I’m having my uterus removed. YEETERUS. In my case, it’s a trans thing. I’m a trans man, having a uterus causes me distress, so I’m getting it taken out. I kind of wish I could give it to someone who wants a functioning uterus, but as far as I know that’s not a thing yet. Also, while I never had it confirmed, multiple medical providers have considered it possible/likely that I have endometriosis, so my uterus might not be desirable anyway.
This has involved a lot of doctor visits. Step one was choosing a place to go through to get my surgery. At the time I did not have a PCP, so I was pretty much on my own to decide. Once I did that, step two was making an initial appointment. This was basically a consultation where we discussed my options including types of surgery available to me (laparoscopic vs. robotic), exactly how much I wanted removed (all of it, but some cis women who need hysterectomies keep their ovaries for hormonal reasons), what sorts of things I could expect, and the next steps to take towards surgery.
Next step was… basically a second consultation, this time with the surgeon who will be performing the surgery. And as I talked about in a previous post, this is where I really started to be conflicted about whether or not to disclose that I’m autistic. I genuinely get confused and a bit lost with this mix of straightforward and roundabout communication in healthcare settings, and I could tell I was missing cues and not responding the way an allistic person would.
Anyway, that appointment got far more specific, I had more question, there were things the surgeon wanted to know and… well…
TRIGGER WARNING I’m gonna talk about a pap smear and briefly mention sexual trauma. I do not go into detail on either one.
Apparently before getting a hysterectomy surgeons REALLY want to get a pap smear first, just so they have more information on what’s going on with those parts. This is a procedure that I find EXTREMELY distressing. It’s physically painful, induces a great deal of dysphoria, and I tend to get PTSD symptoms for at least a week afterwards with vivid and invasive memories of sexual trauma refusing to leave me alone. Technically there was a way to do it with me under anesthesia, but it would mean being put under twice, once for the smear and then AGAIN for the surgery, which isn’t a great option for several reasons. And they didn’t have the capacity to just sedate me, which also would have helped.
In any case, I consented to the pap smear, and it was painful and dysphoric and I basically had flashbacks for a week after, and I dissociated so badly I basically couldn’t walk when it was done. After, the surgeon asked me if I wanted water and all my brain came up with was ERROR. ERROR. ERROR. Point being, I was in a bad place. This part of things was HARD.
Ok, done with that part. You can pick up reading here if you needed to skip it.
Another lovely (/s, it isn’t lovely at all) thing I have going on is a hypertonic pelvic floor. This basically means that my pelvic floor muscles are too tight all the time and don’t know how to relax. I need physical therapy (PT). So my surgeon wanted me to get an initial assessment just to make sure my pelvic floor issues won’t interfere with healing.
That turned into yet another situation in which I wasn’t sure whether or not to disclose that I’m autistic, and the physical therapist was yet another person who mixed direct communication with indirect communication. My therapist (mental health, in this case) has suggested that if I’m uncertain about disclosing that I’m autistic but also struggling with understanding everything, I could just start out by directly asking for all communication to be extremely direct – to the point that it might feel rude to them – and just blame it on anxiety or something.
It’s not a bad idea, but I haven’t tried it yet. And one thing I have found is that people will readily agree to being direct, and even totally believe they’re being direct, while in fact continuing to be totally indirect. It’s just such a THING, and it can be so incredibly tiresome to navigate.
ANYWAY. I digress. The PT appointment went fine and nothing happened that caused significant dysphoria or any dissociation. (ok, I did briefly dissociate once while we were talking and was extremely disoriented when I “came back.” The physical therapist probably noticed that I suddenly looked a little confused, but I think she took it as not quite understanding the last thing she said. I did some grounding exercises to stay more present after that. No idea why it happened) The pelvic floor is a very intimate area, but to my benefit I know someone who knows someone who is explicitly open about treating pelvic floor issues in trans patients, so I jumped on that in a heartbeat. The exam was external, I only had to partially disrobe, and while I did get a little stressed, it really wasn’t that bad at all.
She also confirmed to me that I am doing this in the best order – hysterectomy first, then PT. Apparently she and her colleagues have anecdotally found (no studies on this as of yet) that a hysterectomy can itself greatly alleviate the symptoms of a hypertonic pelvic floor. It’s not a cure, but it helps, which means hopefully less PT will be needed once I’m ready to do that.
I have also spoken on the phone with my HRT provider, as there is a high chance my dose will need to be adjusted after I no longer have ovaries. So we have a post-surgery plan in place to track my T levels and see what needs to be fiddled with. Sadly, this is exactly the kind of thing that can’t really be predicted – it’s going to be blood tests and gradual adjustments, much like it was when I first started T.
Next up is an appointment that’s basically dedicated to signing consent forms and making sure I’m squared away, and then finally it’s the surgery itself.
Roughly around the time of the second consultation when I was getting things going for real, I had a bit over a week of a flurry of phone calls and emails and appointment making and getting my schedule arranged. I struggle to talk on the phone as the sound quality on phone calls is so low that I have to really focus hard to understand what the person is saying. This means that ALL of my processing power is focused on understanding what the person is saying and there is pretty much nothing left over for the conversation itself. I deal with this by anticipating as much as possible of what will be spoken about and what I will be asked, and then writing it all down so I can just reference my “phone call” notes. I mean, I even write down my phone number for every single phone call where I’m likely to be asked for my number.
And that’s what I’ve been doing! I’ve been a little bit too overwhelmed to actually feel excited about it, but the “overwhelmed” feeling is gradually decreasing, making more room for excitement. I’ll admit, though – I’m pretty proud of myself for how much I’ve done. I am apparently VERY motivated here.
Anyway, that’s what the process has been like for a trans man in the US. Thank you for reading. If you have any questions go ahead and ask. I’m feeling pretty open about all this.
ADDENDUM: I wrote this post yesterday. Today I got a package in the mail from my surgeon’s office with sterilizing wipes and instructions on how to use them before surgery. I believe I got the same basic thing before top surgery. So sterilizing my torso as much as I can is part of things as well.
In the autism spaces I’m in, a particular scenario comes up pretty often. It goes roughly like this: A person, I’ll use the name Finley, is an adult who believes they may be autistic. Finley has looked into as much as they can – they’ve checked out the diagnostic criteria, compared it to their own behaviors and history, and something is clicking. It looks like autism might explain parts of themself that they have struggled with their whole life. Finley isn’t super comfortable with self-diagnosis and really wants to know for sure, which means going out and finding someone to go through an official diagnostic process. Then, the people around Finley try to stop them. The people say it’s pointless, there’s no use, Finley is an adult now so why bother, it’s an expense that has no purpose. Finley ends up in an autism space to ask about it. Is it worth getting a diagnosis? Are all those people right? Should Finley just give up on this idea of knowing for sure?
So to be totally, perfectly clear – Finley, if getting a diagnosis matters to you, then it matters. Period, full stop. You shouldn’t have to justify it to anyone, because the fact that it matters to you is ultimately all that matters.
That said, if you’re in the US, you’re probably going to have to pay for it yourself and it isn’t necessarily cheap to do. If you need financial help to access diagnosis, the sad reality is that you will probably need to find a way to justify your need to other people. You shouldn’t have to, I think it’s wrong, but this is the world we live in. So how to do that with people who really don’t see the point?
This can honestly be tough. When I first sought an official diagnosis I asked my dad if he would help me pay for it. To be clear – I didn’t ask him to pay for the whole thing, only if he would be willing to contribute some amount. His response was to compare it to an employee asking their boss for a loan for a job project, and demanded I justify it in those terms. I’ll be honest – I was pretty shocked by that and did not actually manage to comply with his demand. He did not help with the expense of diagnosis. Which is to say – I know extremely well that sometimes the people who are supposed to support us just don’t or won’t.
So how DO you justify it to people who don’t see the point? Well, part of this depends on whether or not they are acting in good faith. If they don’t want to see the point, nothing you say will convince them. That is just an unfortunate truth. But if they genuinely WANT to understand, there are a few ways to approach this.
If you are in a situation where you need accommodations in your job or wherever else, an official diagnosis will really help you there. If they try to come back with the claim that you didn’t need accommodations before so why do you now, well… let me make an assumption here. My assumption is that you DID need those accommodations the whole time, and the fact that you weren’t able to get them has led to burnout, meltdowns, shutdowns, and other unpleasantness. You’ve reached a point where you’re running on fumes, and something needs to change. An official diagnosis will help you get the changes you need.
The comfort of certainty. If you’re like me, not being able to point to a diagnosis to say FOR SURE that you’re autistic just doesn’t feel good enough. Like, ok, I put literal years of time into looking into it and reading and looking at a variety of diagnostic criteria and I reached a point where I was able to be pretty expletive certain, but I just wasn’t comfortable with that. I wanted to know for sure. I’m fortunate enough that I had other people in my life who understood and supported that, even if my family didn’t.
To be clear – I’m not at all trying to say that official diagnosis should matter to everyone. Only that if it matters to YOU, that’s valid and real. I respect that and so should everyone else. It’s unfortunate that we live in a society where official diagnosis is often unattainable without social support. I’m sorry if your social support is lacking and you’re surrounded by people who are dismissive of you. I believe you, and it matters.
I’ve been thinking a lot lately about accessing healthcare while autistic, particularly while less-visibly autistic (since that’s me). Some in more general terms, but also in very concrete, this-is-relevant-to-my-life-right-now terms.
See, I’m planning on having a medical procedure done (it doesn’t really matter what it is, and no, I’m not sick), which is involving a number of consultation appointments and appointments for paperwork, appointments for scans – all sorts of things.
I have not told them that I am autistic, and I don’t know if I should.
As it is, I am masking really hard during appointments and doing my very best to look and act in a way that people would see as “normal” while simultaneously gathering information, asking my questions, and generally just being mentally present for my appointments. This is an enormous amount of work and consistently leaves me completely exhausted by the end.
Of course, that on it’s own wouldn’t be enough for me to consider it a particular problem, but the fact that my mask is hitting limits and sometimes I’m having noticeable processing lag or not responding the way I realize later I’m supposed to IS enough for it to be a problem.
Communication with doctors has been an incredibly confusing blend of direct information and them (I assume) trying to be polite – except a large part of “politeness” is actually just being indirect. Then I take longer to respond, or I ask a clarifying question and the doctor gives me a funny look because from their perspective, they literally just told me what I’m asking about. The processing lag gets worse, I start to get flustered, it’s overall awkward.
So yeah, I think about letting them know I’m autistic so that maybe they’ll understand why communication goes a little funny sometimes.
Buuuuut… I worry.
I don’t actually know how they’ll respond. I’m sure that from their perspective, they will be supportive and understanding. But sometimes all that adds up to is immediately, drastically lowering their estimation of my intelligence or my ability to make choices about my own body. I don’t know what kind of latent assumptions they have about autistic people that will negatively impact our interactions if I make it known that I am autistic.
I mean, I once casually mentioned that I’m autistic to a person on a train, and he immediately asked me where my Carer is. I don’t have a carer. I was taking the train by myself. There are assumptions everywhere. Since they are assumptions, the people who carry them are generally extremely comfortable forcefully shoving their assumptions onto me. It’s one thing to explain how my autism works to a random stranger I’m never going to see again. It’s another thing entirely to explain it to a doctor who is going to be Doing Things to my body.
Most of my posts to my blog are because I have Something to Say about a particular topic, but this time it’s because I’m genuinely lost. Is it better to share or not? I really have no idea. I wish I did.
Ok, so I THINK I found this list of #ActuallyAutistic questions around 4-5 years ago on tumblr, but I seriously do not remember any more details of where I found it or who may have created it. I am really at a loss here. In any case, I thought it might make a decent way to ooze back into this blogging thing, and if any of the questions really strike me I can always note them down to make a proper post about them some other time. If anyone knows where they came from or who wrote them, PLEASE let me know so I can properly cite them.
EDITED TO ADD: Actually Autistic Blogs List found this source for the questions. Still unknown if it’s the original source, but it’s from a similar time period to when I probably found them.
Anyway, let’s go. A bunch of questions about how I experience my autism. Woo!
1: Did you discover that you are autistic early or later in life? How do you think it affected you?
So at the time of writing this I am 39 and rapidly heading towards 40, just to give my answer some context. I got my first inkling that I might be on the autism spectrum when I was 18. I was officially diagnosed when I was 30. I spend the 12 years in-between pondering, wondering, thinking, analyzing, and having random people occasionally say “do you think you might have aspergers?” to me. I think it affected me in MANY ways, which I know I’ve written about in the past but might be worth writing about more. In brief, I was spared ABA but also no one knew what was wrong with me and it was basically all chalked up to personal failings on my part.
2: Which terms and words do you prefer when talking about autism?
I am so very identity-first. English puts adjectives before nouns, so “autistic person” just makes linguistic sense.
3: Do you advocate for yourself and other autistic people?
Well, I used to have a blog I posted to weekly that I’m trying to get going again in some form. That’s about it, honestly. I mean, I guess I advocate for myself in my personal life (see: getting diagnosed as an adult, being trans, transitioning, etc) but that’s about it.
4: How did you find out about autism?
Honestly, I don’t remember. I think I first heard of it somewhere in the vicinity of 2000, pretty close to the same time the first person asked me if I might “have Aspergers.”
5: Do you have any autistic family members or autistic friends in real life?
Family members – not that I know of that are officially diagnosed, but it would not surprise me if certain family members were on the spectrum. Friends – yes.
6: What, in your opinion, is your best autism-related quality?
My capacity to see and focus on details.
7: Which autistic trait gives you the most problems?
8: If you could get rid of one and only one autistic trait, would you do it and which would you choose?
9: Any autistic traits that you don’t have but wish you had?
I’m honestly not sure. The past few questions have already been difficult because I’m not used to breaking down being autistic for myself into specific traits. That said, it’s something I’ve done in the past so I had something to draw on. This one, though… I really don’t know.
10: What do you think about support labels as an alternative to functioning labels?
Ok, so I definitely am against functioning labels. I could go on a rant about “what IS functioning, really?” but I’m pretty confident I know the answer at this point: “functioning” is simply a measure of how well a person passes for NT. This might be worth elaborating on in the future, but yeah. People who look at me see someone who is high functioning because I pass for NT in brief interactions, but I can’t hold down a job, conversation is ridiculously complicated, group interactions with as few as three total people feel hopelessly complicated, I get overloaded in public spaces ridiculously easily, I could go on.
ANYWAY. Support labels certainly do better at identifying something more concrete and practical than this idea of “functioning” but I worry about them also being used to separate autistic people into “respectable” or “not respectable” categories. I suppose that’s true for any label like that, though.
11: What, in your opinion, is the most ridiculous social protocol rule?
Ooh, this reminds me – I want to write a post about why small talk is actually useful and functional (oh no. now you can see that I don’t post in the same order that I write. In any case, I made that small talk post). I generally take the view that all social protocols are useful in some way, and my lack of understanding doesn’t say anything about the protocol itself. I know this sounds like I’m feeding into the deficit model of autism, so I want to be clear – I truly, sincerely wish that this was a stance that everyone took about just about everything. I am VERY TIRED of people using their lack of understanding something as a reason to state that the thing they don’t understand is wrong or bad. Like, you don’t have to understand why or how I’m trans or transness in general in order to accept that I am.
12: What are your hypo- and hyper-sensitivities?
I’m hypersensitive to sounds and food textures. And clothing tags. And clothing texture. And smells.
My sense of proprioception (the ability to tell where my body is in space) and my interoception (the sense of the internal state of my body – for instance, am I thirsty? Do I need to pee? etc) are definitely impaired.
13: What is/are your current special interest(s)?
Crafting. It’s always been crafting. I have other, more minor interests as well – for instance, I REALLY like bags. Hip bags, backpacks, purses, duffle bags, all sorts of bags, and I have very strong opinions on what makes a good bag. But mostly crafting.
14: What is your daily routine like?
Get up. Do hygiene things. Take care of the cats. Read stuff. Eat lunch. Do working stuff (this has meant different things at different times. Sometimes it’s crafting, sometimes it’s writing, I spent several years transcribing for the National Archives). Feed cats. Eat dinner. Craft while watching TV and hanging out with my nesting partner. Have alone wind-down time. Go to bed.
15: How do you stim?
I do some of the stereotypical ones like hand flapping and rocking. Sometimes I like to sorta snap my foot back and forth because I like how it makes my ankle feel. Other times I make popping or other noises in my mouth or throat.
16: Is there any media with canon autistic character(s) you like and would recommend to other autistic people?
OK, so there was this TV show called “Miss Fisher’s Murder Mysteries” which is a murder mystery (obviously) show which takes place in 1920’s Australia. Episode 8 of Season 2 was called “The Blood of Juana the Mad” and featured a one-off autistic woman character who was VERY well-done. I mean VERY. She is never explicitly stated to be autistic in the episode itself, possibly because they are staying true to the time and autism hadn’t been identified as a thing at the time, but it is made extremely clear in the episode itself. Seriously, it was fabulous. Now I want to re-watch it.
17: Which characters do you headcanon as autistic and why?
I recently wrote a post about the general idea of headcanoning fictional characters as autistic and now I feel weird answering this question. In any case, Tina Belcher from Bob’s Burgers, for sure.
18: If you could make one accommodation universally available and 100% accepted, which would you choose?
Specifically an autism accommodation? I’d make public TV’s less prevalent.
19: What, in your opinion, is the most ridiculous autism myth or stereotype?
Hrm. This is tough. Fair warning – I’m mostly answer these questions off the cuff, but some of them definitely deserve more thought than I’m giving them. In my defense – there are a lot of questions! Anyway, the first answer that comes to mind is the tendency of people to reduce all autistic people to a flat, 2D object. Now, that is not a myth or stereotype, and it is a thing that people do to any and all groups that are othered in society. Still, it’s the answer that came to mind first, so I’m going with it.
20: How would you describe autism to someone who knows nothing about it?
It’s like having a different operating system.
21: Do you have any happy autistic childhood memories?
I really enjoyed lining up my toys. Since no one pegged it as an autism thing, no one tried to stop me. It was just me being weird.
22: What, in your opinion, is the best thing about being autistic?
Even though I’m answering these totally off the cuff, I still skipped this one and am coming back to it. For some reason, the question itself is weirding me out and I really don’t know why.
In any case, I guess it’s the fact that I have a unique perspective that people close to me have come to really value. I think differently, which gives me my own, atypical viewpoint, and that in and of itself has value.
23: Do you think autism influences your identity, like your gender, sexuality, religious and political views or personality?
Just to nitpick part of this question – autism is absolutely part of my identity, along with my gender, sexuality, religious views, etc. Anyway, does autism influence those things? Absolutely, in that they are all enmeshed together into the entity that is Me. Also, there is a good chance that I will write posts in the future about the intersection of being trans and autistic, and see my old post about the intersection of being autistic and polyamorous.
24: Are there any internalized ableist ideas that you struggle with?
The idea that generating an income is what gives a person worth. (ooh, maybe this would make another blog topic)
25: Do you think we will achieve autism acceptance soon?
Maybe this could be another thing to elaborate on in a future post, but short answer? No, I really don’t.
26: Are you a no eye contact autistic or excessive eye contact autistic?
No eye contact.
27: Are you a “no food touching” autistic or “mesh all food up” autistic?
No food touching. One of the regular meals my family would make while I was growing up was a simple stew, and I always insisted on separating all the bits into their own piles, and then I would eat each pile one at a time. Once again, my family just saw it as me being really weird.
28: Are you a pretty rock collection autistic or soft stuffed animals collection autistic?
Stuffies collection. Can autistic people really be divided into this kind of binary? I like pretty rocks too, though admittedly I don’t really collect them.
29: Are you a get along with kids autistic or slightly afraid of kids autistic?
These binaries are getting weird. Also, I’m a ‘slightly afraid of kids’ autistic.
30: Are you a soft, gentle touches autistic or a deep pressure autistic?
LAST QUESTION! Oh boy, it’s another binary.
Deep pressure. I seriously cannot handle soft touch. It hurts.
The root of this post is a reddit thread I came across a wee bit ago in which our poster talks about how they started an Instagram about fictional characters they headcanon as autistic, and the strong pushback they got against it. They were wondering why people were reacting so strongly against, apparently, the very idea of seeing fictional characters as autistic if they weren’t explicitly stated to be so by the writers.
And OOH do I have OPINIONS on this matter. I can’t say exactly why THIS pushback happened in THIS instance because I am not psychic, but I do know why SOME pushback happens in SOME instances. So let’s get started.
First of all, let’s talk about headcanoning. A “headcanon” is a personal belief someone has about a fictional character or story that has not been actually stated IN the story, but makes sense to the person who has the headcanon. It’s pretty common for autistic people to headcanon various fictional characters as autistic because, let’s face it, autism representation is kinda sorta completely terrible. There is not a lot of autism representation in fiction in the first place, and what little there is leaves a lot to be desired. Autistic people are generally either objects of pity, quirky geniuses, or simply displayed for comedy. We hardly ever just get to be, you know, people.
This is hardly an uncommon thing in minority groups, of course. Nor is it uncommon in those minority groups for people to headcanon a fictional character to be like them in some way – to fill in the gaps of representation, in order to see themselves when they otherwise wouldn’t. Personally, I’ve seen this a whole lot in queer people headcanoning characters as queer in some way – gay or bi or trans or something along those lines. Because representation is important.
Alright, back to autism representation. This is where it gets a little more ugly. The fact of the matter is that in real life, autistic people are rarely ever actually seen as people. We’re seen as objects. And as objects, we are very much NOT seen as having autonomy or the ability to speak for ourselves. For example, I’m sure we’ve all seen how it’s basically stated that if an autistic person can speak for themselves in some way, we are not autistic enough to “count” (honestly, what a terrible thing to say. It astonishes me how horrible people can be sometimes).
But it also means that to at least some people, when we headcanon a character as autistic, we are essentially saying that the character isn’t really a person. Which, yeah, if we were saying that it would truly be terrible. But we aren’t saying that. We’re saying that we see ourselves in that character. We identify with that character. We want to imagine that character is like us in a way that is meaningful to us. Which, to be clear, is not a conclusion we make carelessly, despite what some people think.
And by “some people” I mean Benedict Cumberbatch (and others, but he’s always the one that comes to mine first for me). I don’t really want to dig a whole lot into what he said because quite frankly, I find it upsetting. So here is a link to a quick summation of this mess, and to summarize the summary – basically Benedict Cumberbatch thinks it’s “lazy” to headcanon people as autistic, and that imagining brilliant, successful characters as autistic “offers false hope” to autistic people, since apparently we cannot be brilliant or successful. And despite autistic people pushing back against that incredibly harmful (and cruel) narrative, it looks like there are people out there who agree with him.
Which brings us back to that reddit user’s Instagram, and the pushback they’re getting against seeing characters as autistic. It’s not at all surprising to me that they are getting this kind of pushback, but I do find it incredibly sad. Someone just wants to showcase characters that they think are like themself in some way, and people get incredibly angry about it. Because of course they do. Because instead of seeing us as people who are seeing aspects of ourselves in fictional characters, they see laziness or accusations of fictional characters being objects or whatever else. I hope that person continues their Instagram, because personally I am really into the idea. There are some fictional characters out there who I personally headcanon as autistic, because they seem like me in autism-specific ways. And you know what? IT’S OK THAT I DO THAT.
Or really, to anyone who is working with autistic children, I want to ask you. What’s your goal?
I’m not talking about the various individual goals you may be working on at any given time. I know for myself I can really only choose a small number of things to work on at a time, which means a lot of picking and choosing. I’m talking about the over-arching goal. The long-term goal. The goal that helps you choose what to work on and what to let go.
This has been something that’s been burbling around for a while now, in my head. I lurk in a few different autism spaces (not because I’m trying to be creepy, I’m just really more of a lurker than a participator no matter where I am), and I see parents asking for help or advice about various challenges they are facing with their children. Sometimes those questions are good, and sometimes those questions leave me raising my eyebrows as to why, exactly, a parent is choosing to fight that particular battle. I’m talking about questions like how to stop a child from stimming, or how to force a child to do a thing that obviously hurts them, or how to make them want to socialize when they’d clearly rather read.
At first I was just going to write about how these are bad questions, but a recent conversation I had in yet another autism space gave me a new way to frame things.
A parent was asking about the ethics of autistic adults to teaching autistic children. I don’t really think they had a solidly coherent argument, but it was mostly apparently about how we have to make autistic children modify their behavior, and autistic adults have the same behavior so can’t teach the modifications. They also brought up the “blind leading the blind” analogy.
I thought that was interesting. I like metaphors, so let’s look at this blind leading the blind thing, shall we? Only lets change that to the blind *teaching* the blind. We live in a society that simply assumes people can see. All sorts of important information about getting around in the world is conveyed visually, and is thus difficult or outright impossible for a blind person to make use of. As a seeing person, I can never understand what it is like to navigate the world while blind. I can read about it, study it, listen to blind people who describe their experiences, but I can never ever really understand. Only another blind person can.
So who is best to teach a young blind person how to navigate the world while blind? Seeing people who cannot understand, or blind people who understand the challenges, make personal use of the tools at their disposal, and have been through the learning process that the child is going through?
Of course, maybe that’s not your goal. Maybe your goal is to make it so that the blind person simply doesn’t look blind. So that anyone who looks at a blind person won’t know that they are doing so and maybe feel uncomfortable. Of course, this goal is frequently incompatible with said blind person actually being able to independently navigate and live in our society. It would involve taking important tools away from them and leaving them dependent on sighted people in a way that shouldn’t be necessary.
It seems painfully obvious to me that the goal should be “learn to navigate the world while blind.” Saying otherwise is simply absurd.
So how come when it comes to autistic children, the goal is so often “don’t look autistic” rather than “learn to live in/navigate the world while autistic”? There will be times when these goals blur together a bit, but there are also plenty of times when they are diametrically opposed. If you have a goal to stop your child from flapping their hands, why is that? What over-arching life-goal does it fit into – being able to navigate the world while autistic, or simply looking not-autistic?
I really hope your goal is to teach autistic children how best to live in the world while autistic. I really hope that you understand what that means – including things like making sure they have the tools to do so, even if it means their autism is visible. It also means including autistic adults – people who know what it’s like, who have experiences in what works and what doesn’t work, people who have been there and done that.
Overall, it’s something I really hope you keep in mind when you work with autistic children. Someday that autistic child is going to be an autistic adult. What’s your goal?