Tag Archives: actuallyautistic

Can Autistic People Respect Boundaries?

Creative commons image by Nick Youngson

Yes.

Ok, that isn’t enough for a blog post. Before I get more into it, though – autistic people reading this will almost certainly already be entirely aware of everything I’m about to say. As such, this post is really targeted more towards allistic (non-autistic) people who might have autistic people in their lives in some way.

Also, I feel like I need a disclaimer here – there will, of course, be some autistic people who just don’t respect boundaries at all, in that there are some PEOPLE who don’t respect boundaries at all. There are many kinds of people out there, and not all of them are kind or respectful. Anyway, moving on.

To put it simply – the problem isn’t that autistic people don’t care about boundaries, the problem is that autistic people often don’t understand boundaries in the way that allistic people do, nor do we necessarily understand what people are trying to communicate to us when people try to communicate boundaries.

For some reason, many allistic people seem to think it’s rude to simply state a boundary in blunt terms. I once read a thread of people talking about how to get guests to leave when they have overstayed their welcome, and not one person had “I just tell them it’s time for them to go” as a suggestion. Instead it was all hints, clues, tones of voice, body cues, and one person even said she’ll get out the broom to start sweeping, sweep around her guests feet so they move, and using this technique literally “sweep” them out the door! I was so astonished by that whole thread! Why can’t you just tell your friends that it’s time for them to go?

In any case, as an autistic person, that is the kind of thing I’m talking about. I really need things stated to me VERY CLEARLY AND DIRECTLY, and that is definitely a struggle for allistic people. I can’t count how many times I have inadvertently overstepped a boundary simply because I didn’t know it was there. I’ve had people try to communicate boundaries to me with small hand-waves, with the way they walked, with the stance they took while standing, with verbal subtext, with eye glances, and really I don’t even know what else. At some point I started directly telling people that I need communication to be very blunt, that I need them to TELL me their boundaries so I can understand. People consistently assure me that they totally get it, they’ll definitely be direct with me, it’s cool.

Next thing I know, they’re incredibly angry with me because I was supposed to understand that a little hand-wave meant “stop hugging me” and really, that was TOTALLY clear on their part, I must have ignored it on purpose. 

Then I am in the awkward position of being both truly apologetic – I really am sorry! I didn’t mean to overstep a boundary! – and deeply frustrated. What happened to just telling me? I TOLD you that I can’t see those subtle forms of communication, and you assured me that you understood and it was ok! IT CLEARLY WAS NOT OK. 

I will absolutely respect your boundaries. I WANT to respect your boundaries, very much. But I have some difficulties in allistic-style communication, and this means I need you to just TELL me. Clearly, plainly, bluntly, even rudely by allistic standards. Because otherwise things tend to go from “so subtle I missed it entirely” to “explosion of anger” and I end up so confused.

Now I do want to put in a very important exception – the dating world. Bluntly rejecting or setting boundaries with men can be very dangerous to women. Sadly, we haven’t yet reached the point where men as a whole understand that women do not owe them their time, attention, or bodies, and women (or people perceived as women) need to be very careful. This means that there are situations where a woman might be trying to extract herself without just saying “I’m not interested” because being blunt like that carries the very real risk that the man will respond with violence. So what should autistic men who want to date women do? Simple – embrace enthusiastic consent. Treat anything less than a “hell yeah!” as a no. Prioritize everyone’s safety over your own desire to date or have sex.

So, in conclusion – yes, autistic people can totally do boundaries. In general, we need them communicated to us clearly, because that subtle, clue-based communication that allistic people like so much is often very confusing for us. Autistic people work VERY hard to accommodate the needs of allistics. I don’t think it’s a lot to ask for communication we can easily recognize, that will help us to accommodate you even more.

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Learning Patience for Myself OR Making another point using my cat

This is a picture of Rye from the first few months of her being with us. At this point she wanted to be around us, but did not want to interact with us AT ALL. So she lived under the futon and we put a night vision camera under there so we could keep an eye on her.

I’ve already talked once about my amazing cat, Rye. The one who is deeply anxious but through the power of accepting her as she is and her own tenacity and bravery has achieved more than I ever thought she would. I am so very proud of her.

I am also anxious. I’ve had pretty deep anxiety for as long as I can remember. I am medicated for it now and really doing much better, but nothing can make it go away completely. I get anxious sometimes. Sometimes it’s social anxiety, sometimes it’s anxiety about trying a new thing, sometimes my heart just pounds and my breathing is fast and I’m shaking for no apparent reason at all – it’s just aimless, pointless anxiety about nothing. That last one is kind of annoying, honestly. 

I’ve also been very frustrated with myself about my own anxiety. When I was growing up it was often treated with impatience or dismissal or anger, so I learned to be ashamed of it. My being fearful was being “bad” and when I hid my fear I was praised for being “good.” I have a few specific examples I kind of want to trot out, but I don’t want to be excessively depressing and I’m not actually looking to really talk about my childhood right now. Suffice it to say – I learned that being scared was “bad” which translated into seeing MYSELF as “bad” because I was so afraid and I wasn’t able to stop being afraid.

Enter Rye. While her foster mom* is lovely, potential adopters don’t want her because they see how scared she is and don’t want to deal with that. As though her fear is something to “deal with” or is a “hardship” in some way. Well, as I said in that previous post about Rye, I don’t consider her anxiety to be a hardship on me at all. And being a person with much anxiety myself, I know how to treat an anxious cat.

Over time, I started to notice something. The way I treated Rye and her fear was very different from how I treated myself and my fear. I never placed any demands on Rye, but I would make demands on myself that regularly ended in panic attacks or other unpleasantness. I had absolute trust in Rye to set her own pace, but no such trust for myself. I am always incredibly proud of Rye and every accomplishment she makes, but every step forward I take is accompanied by an internal litany of how I still fall short.

Now, I am one of those people who always has stricter standards for myself than for other people. I suspect many of us are like that. It’s not actually something I think a whole lot about, but eventually the double standard on how I responded to myself vs. how I responded to Rye was just too much to ignore. 

I had a few ways available to me to resolve the cognitive dissonance. I could decide that I need to be harder on Rye. I could decide that we just need to have two different standards because Reasons. Or I could decide that I should be gentler with myself.

It probably goes without saying that the first option was no option at all. Not. Happening.

Option two was tempting, but I couldn’t quite manage to create justifications that satisfied me. I really tried, though.

Which left option three. Honestly? It’s kind of working. I really have gotten so much more gentle with myself and my anxiety. Maybe it isn’t bad of me to be afraid, maybe it’s not a moral failing on my part, maybe I’m not actually weak. I see Rye as phenomenally brave, the bravest cat I’ve ever known, because of her willingness to do things in spite of her fear. Maybe, just maybe, my accomplishments are worth praising without also belittling myself. Maybe, just maybe, I’m brave too. Maybe, JUST MAYBE, I can be proud of myself.

Ok, I haven’t actually made it that far. I’m not proud of myself yet. But I am far gentler with myself, and less inclined to judge myself harshly for feelings I can’t control. I’m better at being, if not proud, at least happy with myself when I do things that are hard for me. 

And you know what? This works SO MUCH BETTER. Turns out getting angry with myself for being fearful didn’t actually accomplish very much. Rye taught me a lot about the power of accepting others for who they are. Now she’s teaching me about the power of accepting myself.

* If you’re wondering why her foster mom didn’t just adopt her if she was having so much trouble finding a home, well, I wondered that too. Apparently Foster Mom thought her home was too loud and chaotic for Rye to flourish in, and wanted to find a calmer, quieter home to be Rye’s forever home.

This is Rye in my lap a few months ago. She’s come so far. If I can be proud of her progress, maybe I can be proud of mine as well.

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Sex Positivity and Autism

First things first – I am not an expert and I am not making any claim to be an authority in this area. I am simply an opinionated autistic trans man who has some thoughts on the topic. 

CONTENT NOTE: This post will be talking about sex and body parts. If you aren’t comfortable reading that, please take care of yourself first. Read on only if you are comfortable/ok doing so.

Continue reading

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Body Language & Neurodiversity

Image is of a child with black hair wearing pink, chewing on a necklace. Text reads: “I look different when I listen / I may stare into space to focus on what I hear / Rocking or quietly fidgeting keeps me calm and focused / Sitting oddly may be more comfortable / A blank expression means I’m thinking / Biting a rubber toy is better than biting myself / If I disrupting others, please gently talk to me” All showing that neurodiverse body language can be different from neurotypical body language. Image from wikipedia, by Miss Luna Rose.

There’s this one youtube channel I watch called Observe. It’s a guy who is studying how to read body language, and he puts out videos where he analyzes body language of various people – sometimes it’s true crime, sometimes it’s other youtubers, sometimes it’s from “reality” TV; it’s a whole range of things. I happen to really like the guy – he is very honest about how interpreting body language is limited, it can never be perfectly accurate, etc. He explains those limitations in the beginning of all of his videos.

And in watching said videos, I have noticed that he seems to have a gap in his knowledge around how body language can be different in neurodivergent people. There have been multiple times where he’s made a comment about someone’s body language that really jumped out at me because I can see how his analysis is so different from my own lived experience and what I know from my friends who are also on the spectrum. So I wanted to talk some about that.

I do want to get some heavy disclaimers in here. First of all, none of this is meant to be criticism of Observe or his channel or his analyses of people. I think he’s great, I think his analyses are great, and I’m not inclined to say any of the videos he made that I will be commenting on are wrong – only that I can see how I (and possibly other neurodivergent people) are different from how he seems to think of things. Second of all – I am not a body language expert. I am not claiming to be at all. I am only an expert on myself and how I interact with the world. That is the direction I am coming from here.

ANYWAY. That’s enough preamble, let’s get to talking about some actual points.

He made a video about Mr. and Mrs. Philpott. I have no reason to believe the people in question are autistic or even neurodivergent, so I am not disagreeing with his analysis. I just want to talk about a point he made that really jumped out to me when I was watching the video. 

Mr. Observe says: “He starts off and he has a lot of halting, a very jilted timing to the flow of his words. He’s not speaking fluidly and he does have the ability to do that. This instance of having halt in your wording can be an indicator of psychological processing which could be an indicator of deceit. It would be considered a red flag in my book or according to the methodology of the university that I go to it would be called a point of interest.”

This downright jolted me. This is the first time in my life that I had EVER seen jilted timing of speech be tied to deceit. I can see now how that connection would be made, but it really startled me at the time. 

Here’s the thing – my speech can be incredibly jilted too. It isn’t always – I do have the ability to speak smoothly, but only if I already know what I’m going to say and have it all thought out and processed ahead of time. Otherwise? My speech is odd, my timing is jilted, there is no real flow to my words, etc. People I’m talking to have had, on a variety of occasions, difficulty telling when I’m done talking or when I’m just pausing. It does come from psychological processing, as Mr. Observe said. But for me, that psychological processing has nothing to do with deceit and everything to do with trying to translate what’s going on in my head into words, and then getting the words out of my mouth. Both of those things can be pretty challenging on their own, and when I’m trying to do it in real time, well, things get weird. But it does not, at all, mean that I’m lying.

I also talk in that weird cadence when I’m talking about anything emotionally fraught for me. Even if it is reasonably processed, it just never comes out smoothly. In order for me to talk smoothly when I’m having a lot of feelings in that moment I basically need to have it all scripted out ahead of time, and even then sometimes my cadence will be weird and my speech jilted. The point being – while the man in Mr. Observe’s video is known beyond all doubt to be lying, if I was actually for real in a situation in which a beloved family member was missing and/or dead, my speech would be just as jilted and strange as Mr. Philpott’s was. It’s scary to think that people may take me for a liar simply because my ability to speak smoothly comes and goes.

Again, just to reiterate this point yet again – I am not inclined to say that Mr. Observe was wrong in his analysis in this particular instance. Only that he drew a connection that is not at all safe to draw when, say, looking at a neurodivergent person. 

Onto another video by Mr. Observe! This one on Nikki Phillips & her husband Dan. (content warning if you’re following my links – this one talks about abuse of an animal and may be very hard to watch) Once again, he speaks of stilted body language and this time also about awkward body movements. He didn’t mention her baseline this time (a “baseline” being how a person’s body language normally looks, to compare against to see if anything odd pops up) so I can only assume he intended to say that those things were different from her typical body language.

Well, I’ve already gotten into stilted speech, so let’s talk about awkward body language. My body language can be pretty expletive awkward. I had to very consciously and deliberately learn how to express my body language in a way that neurotypicals understand. My facial expressions were (still are, though less so) things that I “put on” for other people to see. The emotion behind the expression was real, but the way I made it so that other people could see the emotion was very much not.

Doing that correctly is tough. For instance, Mr. Observe talks about facial expressions coming on suddenly, lasting too long, and then suddenly leaving, and how that’s a sign of deceit. Well, in the video in question I’m sure it was. For me, though, it’s quite different.

I can remember being a very young child and my mom explicitly teaching me how to grin, or do an open-mouth smile. Because I didn’t know how. Jumping ahead some 30 years – I can remember trying to figure out how to do facial expressions correctly, knowing that I was messing it up, but not knowing how to fix it. Once again talking about grinning – I would be in a social situation, and someone would say something funny. So I would laugh and put a grin on, because I knew that’s what you’re supposed to do. But… then what? Every time, the grin would last too long, I would realize that I probably shouldn’t be grinning anymore, so I would take it off. People generally gave me funny looks, but I genuinely didn’t know the correct way to do it. Eventually I learned that grins are supposed to be very short, but taper quickly off into a smaller smile that can itself taper off. LIGHT BULB MOMENT for me! Expressions taper! THAT’S why I didn’t look right! I was just putting them on and taking them off like a mask. No wonder people looked at me funny.

I have gotten much better at it now, but even so – my expression of emotions tends to be false, simply because my natural way of expressing myself is unsettling to neurotypicals. I flap, I make noises, I shake my head, I position my body in ways that NTs would (and do, when they see it) find weird. 

In this video, Mr. Observe also noted that when emotional displays are “off” people generally don’t feel an empathetic response. That was telling. If you’re autistic, you’ve probably had experiences of NTs really failing in having empathy for you (even while being told that you’re the one who lacks empathy, oh this is a touchy topic for me). Well, maybe this is why! We don’t “look right” and NTs don’t respond to that particularly well. 

Now, there was one part where Mr. Observe DID mention neurodivergent people, which I really appreciated. It involved one of the people being randomly distracted by a bird, and that may not be unusual in neurodivergent people but was unusual for that particular person. I really appreciate that nod to neurodiversity and how our behavior can be different from what’s “normal.” I only wish he did that more often.

Ok, one last video note before I get into some other things. In this one Mr. Observe was looking at clips from a reality TV show, this one centered on two people named Big Ed and Liz. At around 41:08 Mr. Observe notes that Big Eg was avoiding looking at Liz, and that this is an “indicator of possible shame.”

Interesting.

This is also connected to how autistic people tend to look away from people/avoid eye contact, and how that is seen as a sign of dishonesty. 

Well, personally I hate making eye contact and I am EXTREMELY uncomfortable looking directly at people. It is a thing I very much try to avoid if I can, but it has nothing to do with shame or dishonesty. In my case, it’s more about avoiding overload. SO MUCH of a person comes out of their face; it can be absolutely overwhelming. Also, and I’m not entirely sure why this is, looking directly at a person feels incredibly aggressive to me.

All this means that there are two instances in which I will look directly at a person. Most often it’s because I’m masking. Maybe I’m at a doctor’s office and I want to look as normal as possible – I will try very hard to make appropriate levels of eye contact and look directly at the person I’m talking to. The other typical instance is when I am actually feeling angry or aggressive. Based on how NTs react to this, it isn’t actually a glare in the way an NT might act. It’s just… looking at someone. But that, in and of itself, already feels incredibly aggressive to me, so why would I add anything to it? 

Now, in terms of Mr. Observe’s videos, all this probably doesn’t matter ALL that much, except for that he is trying to be an educational source and people are going to be watching his commentary without necessarily realizing how different things can be for neurodiverse people. And quite frankly, no one necessarily knows when they are interacting with an autistic or otherwise neurodivergent person. Not unless we tell them, or they already understand what they are looking at and what it means – which is not that many people. 

One place where this can REALLY start to matter is in interactions with police. Unfortunately, police can and do interpret autistic body language, mannerisms, and extra time needed for processing as being non-compliant or dishonest, and that puts autistic people at higher risk for police violence.

From the AELE Monthly Law Journal:

“Some autistic persons have difficulty making and maintaining eye contact with others. A police officer may mistakenly interpret this as “suspicious,” having something to hide, or defiance, when in reality it is not being able to or not knowing how to respond appropriately, or even fear from what, to many, would be a routine social encounter. The result has sometimes, unfortunately, been rapid escalation of the encounter, with ensuing injury or death.”

This is a very real thing for autistic people (and I feel the need to add in – black autistic people are at even greater risk, and that is absolutely horrible and tragic). The journal goes on to talk about a few specific instances of police violence towards autistic people, sometimes even after they had been informed that the individual in question is autistic. Sometimes even to the point of killing the person. 

While I cannot cite it – I also remember someone in an autism group I was in ages ago telling the group an interaction she had with police. While she might generally have been described as “high functioning” she is still autistic, and it can still show. She had an encounter with police where as she got more and more overloaded and struggled more and more to process what they wanted, the police responded with ever increasing aggression. It sounded terrifying. She was lucky, though. She was able to eventually blurt out “I’m autistic!” and apparently they had some training to know to back off and calm down. They then told her that she should have told them that she’s autistic right from the start. Which… I don’t know, maybe she should have? But also maybe she shouldn’t have to? Sometimes disclosing that we’re autistic to police can help, but sometimes it doesn’t. It can be hard to know what to do.

I am personally very afraid of having an encounter with police. I know I’ll need to act “normal,” and I also know that in that situation, I probably won’t be able to. While I rarely scream and cower in a corner with my hands over my ears anymore, I can’t definitively say that such behavior is entirely in my past. 

All of which is to say – while this can just be interesting observations while watching a youtube video about body language, it is also a very real thing that impacts the lives of autistic people, sometimes in incredibly dangerous or even deadly ways. We need better awareness that neurodivergent people do not necessarily act the way people think we “should” and that you can’t just assume someone is neurotypical until told otherwise. That’s how people get hurt. That’s why people sometimes respond very badly to autistic people and we don’t understand why or how to fix it. It’s why the job of fixing it has somehow been placed on the shoulders of autistic people, even as we’re just trying to live our lives. 

Anyway, just to say for one last time – I really do like Mr. Observe and I like his channel. I think he is genuinely trying to be thoughtful and realistic about what he’s doing. I just also think this is one area where maybe his education is falling a bit short.

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I’m getting surgery!

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.

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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.

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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.

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If a diagnosis matters to you, then it matters

Image by Nick Youngson creative commons license

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.

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No Shame in Bailing

I imagine many of you will recognize the title of this post as being from Steven Universe. I want to talk some about how this line hit me and what it means to me now.

When I first saw the episode when this line showed up (S:1 E:28 “Space Race”), the line itself kind of shocked me. My initial reaction was basically “what? No way!” because it is so very very different from basically anything I had ever heard before then.

For a little bit of context for those who haven’t seen it – in the episode, Steven (a child) is about to try riding a little hand-made cart down a hill, and his father (Greg) takes him aside for a few fatherly words of wisdom. Those words of wisdom concluded with (essentially, I might not be remembering this exactly) “and remember Steven, there’s no shame in bailing.”

Whaaaaat?

Since when does a kid’s show tell a child that it’s ok to quit? Don’t we tell children to always see things through? We say “winners never quit and quitters never win!” We say “don’t start something you can’t finish!” This thing, about it being ok to try something you aren’t sure of and just quit if it isn’t working was quite literally brand new to me. Needless to say, I was extremely sure that Greg was saying something bad and he was going to be proven wrong.

So imagine my surprise when shortly afterwards, bailing turns out to be exactly the correct thing to do. Not once, but TWICE! In an 11 minute episode? What is happening? How can this possibly be the moral of the story?

It’s been over six years since that episode aired and being the overly-analytical person that I am, I have spent a fair amount of those six years thinking about that episode and that line in particular. I am now firmly of the opinion that Greg is absolutely correct. There is no shame in bailing.

Here’s the thing – I have anxiety. I have sensory issues. I struggle in group social situations, because group social dynamics continue to elude me. Giving myself permission to bail has opened up so many opportunities for me to try new things that I’m not sure about. Knowing that I don’t have to see something through means that I can try something that might be great, but also might be too loud or too complex or just too much for me. It’s ok for me to take risks, because it’s ok if they don’t work out. I don’t have to risk harming myself by trying to force myself to continue to do something that’s hurting me, because I give myself permission to bail. 

This also means it’s easier for me to make an honest effort to really, genuinely try something new and scary. When I believed I had to see everything through, I didn’t try all that many new things. Because what if it didn’t work out? WHAT THEN? Well, now the answer is that I bail. And that’s ok. 

I really want this to become a bigger thing in our society. I want our children to be taught that it’s ok to quit – it’s awesome to try new things; that’s how we find new things we love, but not everything we try is going to be good for us. And sometimes we won’t learn that until after we try it. And THAT’S OK. 

Go ahead and try a new thing. Go ahead and take a risk. And if exiting turns out to be what you need to do to stay safe, then exit without shame.

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Let’s talk about spectrums

Let’s talk spectrums (no, not the book I’m published in, yes I am shamelessly plugging myself here). Autism is commonly referred to as a spectrum. So are many other aspects of humanity – gender is a spectrum, various mental illnesses are spectrums, lots of things are spectrums.

Now, the point about the autism spectrum not being a line is nothing new – I’m just adding my voice to the chorus here. I only want to add that spectrums in general are not lines. Looking at spectrums as lines is limiting us and giving some people some very incorrect ideas about what “spectrum” means.

Story time! Once, someone tried to explain to me why the phrase “everyone is a little bit autistic” is actually totally correct. See, autism is a spectrum, right? And spectrums are lines, right? And the autism spectrum goes from “not at all autistic” on one end to “all the way autistic” on the other end, right? So really, EVERYONE is on that line, RIGHT?

NO. WRONG. HOLY MOLY ABSOLUTELY NOT.

Ok, for the purposes of this post I am going to be using the color spectrum as an analogy, because I think it really works well.

So when most people think “spectrum” they seem to think something like this:

Image from wikipedia

You know, a basic line of color. And sure, this is a spectrum, but it really could be so much more.

I’ve actually seen some people just stop here and try to not use “spectrum” to describe things, because of how many people think that a spectrum is just this linear thing. I sympathize with that perspective a great deal, but I am still on the side of pushing back against the idea and trying to widen the idea of what a spectrum really is.

Of course, even here that person’s line of thought that I mentioned above falls apart. Because the color spectrum doesn’t go from “a little bit of color” to “a lot of color.” It goes through the range of colors that we can see. The logic! It is flawed!

Anyway. Let’s go back to colors, shall we? The color spectrum does not actually have to be displayed as a line. There are, in fact, other ways to show it that give us a broader range than the simple line.

Image from Wikipedia

Here we see a 2d color space, including both color range and saturation range. It’s a spectrum! Being more than a line!

BUT WAIT, THERE’S MORE.

We also have the RGB Colorspace Atlas books, co-designed by Daniel E. Kelm and Tauba Auerbach. They are 8x8x8 books going through the color spectrum, each page itself a small spectrum. The end result – a color cube. 3d color. A spectrum with depth.

Source

Now, color is amazing. Our eyes are amazing. But in the end, we’re talking about wavelengths of light interacting with our retinas. Yet we still need to move beyond the idea that a spectrum is a line in order to appreciate the range of color we experience.

How much more true is that when the spectrums we’re talking about describe PEOPLE? We deserve better than that – both as people who are on various spectrums and people who are thinking in terms of spectrums. Spectrums are incredible, just in general. The spectrum of human experience is vast and in no way linear. Spectrums in general are not linear. Seriously, let’s just ditch the idea of linear spectrums just in general and understand that when we see a spectrum in a linear way, we are seeing a drastically reduced version of it. One that loses all the richness and depth that could – and should – be there.

A side note about physics: Ok, I do understand that specifically in the science of physics, “spectrum” is a specific term that IS, in fact, linear. It is intended to be reductive in that it is also understood that a spectrum is showing the range of one specific thing. Important to note – there is no single scale or range to measure that defines autism – there are many facets and factors involved. We can either stop calling autism a spectrum entirely, or allow our concept of spectrums to grow. So too in color theory, where people refer to hue, lightness, and saturation – all of which could be shown on their own, individual, linear spectrum. Put them all together into the more colloquial idea of spectrum, and you get a colorcube. 

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Autism Questions

Since this is a post in which I talk about myself, have a selfie! I don’t actually take very many of these, so I am feeling very self-conscious.

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?

Sensory overload.

8: If you could get rid of one and only one autistic trait, would you do it and which would you choose?

See above.

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?

No. 

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.

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