Tag Archives: autism

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.

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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The Power of Acceptance, OR I talk about my cat

This is Rye, having a breakthrough moment by being in my lap only a few days ago. There’s no way to know for sure, but it’s possible that this was the first time she has ever been in a lap at all.

I am a cat person. 

So just to explain more of where I’m coming from when I talk about my cats – I have four cats. My nesting partner and I prefer to adopt cats that are struggling to find homes, which means we do tend to gravitate towards cats who have, shall we say, emotional issues. One of those cats is Rye, a cat I initially adopted purely because nobody else wanted her because she was just too scared for anyone to want to deal with. She’s just not the kind of cat who’s a little shy at first but then you win over within an hour or two of being nice. She needed a home, I know how to deal with anxiety and I didn’t need her to be friends with me, so I provided her with a home.

Now onto the bragging part. In the years she’s been with me, she has absolutely blossomed. Her foster mom warned me that while she is sweet and lovely once she feels more comfortable, there are some things she would just never do. And I was ok with that! Well, as it turns out she is both sweet and loving, AND she has absolutely blown away all of my expectations of things she would never do. I mean, she sleeps on my bed at night, often choosing to sleep physically on top of me. I could fill a whole blog post about how she has come so far in her time with me but that’s not actually the point of this post so I’m going to try to move on.

Sometimes I brag about her on facebook to my friends because of how proud I am of her, and sometimes my friends will comment back about how patient I’ve been with her. I try to just accept the compliment that I’m sure they are intending, but it always feels weird to me. It recently struck me as to why that might be feeling so weird.

See, it seems to me that “being patient” implies that I’m waiting for something. Or, if we go by dictionary.com: “bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like.”

Which is to say – I haven’t been patient with Rye at all. Even a little bit. I’m not waiting for anything from her, and I never was. I’m not bearing provocation, annoyance, misfortune, delay, hardship, pain, or whatever else AT ALL. Or at least, not from her (let’s be real, it’s been a rough time, just in general). 

Here’s the thing – I’ve never asked anything from her. I never wanted anything from her; not really. My goals for her, from the very beginning, were for her to feel safe and happy. That’s it. That’s all I wanted. I didn’t adopt her to be her bestie, I adopted her because I genuinely believed that I could provide her with a home in which she felt safe and happy. THAT’S IT. 

I knew that she was afraid, and I wanted her to be less afraid. But thing is, I can’t force that. So instead, I made the conscious and deliberate choice to follow her lead. She would tell me when she’s ready to try something new, and if she’s never ready, that’s ok too. I made the choice both to trust her, and to accept her for who she was AT THAT EXACT MOMENT IN TIME. Not an idea of what I wanted her to be – exactly who she was, as she presented herself to me. That’s it. No more, no less.

And you know what? IT WORKED. Better than I ever imagined.

When she first approached me to ask for pets, I was beyond astonished. I legitimately did not think that would ever happen. 

When I realized that she likes me, I was astonished again. 

This list could go on for a very long time, so let’s skip to the end. I’ve learned by now that I can never assume that she will never do something. She’s stomped on that assumption more than enough times by now that I’ve learned better. I mean, I can’t apply my own timeline to her – she will do things in her time and in her way. However, allowing her the freedom to choose her own timeline is what has given her the freedom and safety to expand her boundaries as much as she has. 

For years, I never asked ANYTHING of Rye. Literally nothing. Until recently, when she found a way to communicate to me that she likes me so much that she will do things purely because it makes me happy when she does them. (do you want me to go into what happened? I was about to write it out but then I remembered that this isn’t supposed to be a “brag about Rye” post) So now I will sometimes ask her for small things, specifically because it gives her the opportunity to show me that she cares.

She likes me. She trusts me. She feels safe and cared for with me. The reason for this is because I accepted her for who she is. I met her where she was, and I was willing and happy to stay with her there forever if that’s what was needed for her to feel safe. And because I met her where she was, because I didn’t need anything from her, because I trusted her to move at her own pace, she DID move. She has progressed so much more than I ever imagined, and I am absolutely certain that she never would have if I had demanded she be anything other than who and what she is. 

She doesn’t have to meet any timeline to be valid or for her progress to be real. She doesn’t have to conform to anyone’s idea of what a pet should be like to be a sweet and wonderful pet. My patience will never run out because in the end, the only goal is her safety and happiness, and we met that goal long ago. 

Everything else is just a bonus. And I love her for it. 

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April Wears On Me

Image is of a tired teddy bear slumped over a laptop. Creative commons license, image by Nenad Stojkovic.

As I write this, it is halfway through April. Or Autism Awareness month. Or possibly Autism Acceptance month. Or “sell autism merchandise” month. Honestly, it mostly seems to be that last one.

For the past 15 days I have been absolutely bombarded with targeted advertisements for autism-related things. I expect the same for the next 15 days. And I’m already tired.

I expect that I am a particular target for those advertisements because I am autistic and I talk about it openly. It still strikes me as an odd choice, though – do the algorithms think that I need to be made MORE aware of autism somehow? Because I can assure you – I am already VERY aware of the existence of autism and autistic people. I also like to think I’m pretty accepting of autistic people, including myself. 

Ok, I’m only kind of serious there. I know perfectly well why I’m being targeted, and it isn’t to make me more aware – it’s because people are selling things, and they think that autistic people will be more likely to buy their autism-themed wares. Or (and now that I think about it, this is more likely) they think that parents of autistic children will be more likely to buy their wares, and I’m getting swept up with that because I am an adult and they have forgotten that autistic children turn into autistic adults. Whoopsie!

Often, but not always, the products feature puzzle pieces and the color blue. Often, but not always, the proceeds aren’t getting donated to any autism organizations. Often, but not always, when the proceeds are being donated, it’s to A$ or the like, rather than an actual autistic person lead organization. On one notable occasion, the seller had listened to the autistic community enough to feature rainbow infinity symbols and the colors red and gold, but was still donating to A$ which was honestly really confusing.

And it just wears on me. I know, I should just scroll right by. Don’t even look at them. I almost feel compelled to look over them every time, though. What colors are featured? What symbol is being used? Where is the money going? Why do I keep getting a stomach-ache when I look at these things? (don’t answer that. I know why) 

Like so many ills in the world today, I wish I could do something but I truly don’t know what. If the seller hasn’t bothered to listen to autistic voices yet, they certainly won’t bother to listen to me.

I don’t have a pithy wrap-up to this. I have a blog. Obviously, I am in favor of autism support and awareness and acceptance. These are good things that we need more of. But when an ad literally says “Show your support for Autism Awareness by wearing our custom products.” I just can’t even. It’s not like I’m surprised. I know this is how things are, and I know it’s not just autism stuff where this happens. 

It’s just that April wears on me. Which is a bummer, given that in theory, the month is supposed to be about accepting me.

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In Defense of Small Talk

Full honesty here – I might have posted about small talk in the past. I legitimately do not remember, and I just don’t really feel like digging through all my old posts to see if I did. It was a long time ago, and I wrote a whole lot of posts. In any case, my thoughts on small talk have evolved in the past few years, though my overall opinion remains the same.

Just to get straight to the point here: SMALL TALK IS GOOD.

Ok, now for more blather. Small talk gets a lot of hate. Being autistic and introverted and socially anxious, I tend to be in circles that really dislike small talk. People will say it’s pointless or meaningless, I regularly see things about people throwing “no small talk” parties, there’s that “find the others” quotation by Timothy Leary that I honestly find a little unsettling, people are making declarations that they are done with small talk forever – the point I’m getting at here is the consensus seems to be that small talk is attempting to fill a void that isn’t actually there* instead of serving an actual function.

Here’s the thing, though. Small talk DOES serve a function. Now, I’m not going to try to say it never gets overused because I don’t actually know if it gets overused or not. Maybe it is, maybe it isn’t, but even if it is overused, that doesn’t mean that small talk itself is the problem. Small talk is necessary.

Let’s start with the “hi, how are you” ritual that I KNOW I’ve talked about at some point in the past. Is the cashier at the grocery store genuinely interested in how I am when they say “hi, how are you?” No, no they are not. Luckily for all of us, that’s not the point of the ritual! And yes, I am calling it a ritual because I genuinely see it as a ritualized greeting in our society. (and by “our” I mean that I live on the east coast of the US so this is my normal) (I’ve lived in several other regions of the US as well and the “hi how are you” ritual has always been a thing, but it might not be a thing in other countries, I don’t know) (ok, back to the point) ANYWAY. So this is about how the “hi, how are you” script goes:

Person 1: Hi, how are you?

Person 2: Oh, I’m fine, how are you?

Person 1: I am also fine, thank you.

Aaaaaaand that’s about it. Here is what’s actually being said, though:

Person 1: Hi, I acknowledge you as a person.

Person 2: Thank you! I acknowledge you as a person as well.

Person 1: Thank you! We are both people!

You may notice that this ritual is almost entirely done between people who are strangers or are otherwise poorly connected. If I say “hi, how are you” to a close friend, I genuinely want to know how they are. If I say it to a cashier, it’s because I’m using a social ritual to make it easier for us to interact for that minute or so that we need to talk to each other.

Beyond the aspect of social rituals, small talk serves another vital purpose – finding similarities, and through similarities, connection. There’s a reason small talk almost always starts with the weather – it’s because as a rule, we can all AGREE on the weather. It’s a common starting point where people who know absolutely nothing about each other and might be wildly different can agree on something. Even if, say, one person loves rain and the other person hates rain, we can all agree that it IS raining, and possibly that the rain is inconvenient, and that wow, it’s so wet out there. We can all agree on that regardless of political beliefs, religious beliefs, whatever else. 

When it’s a brief interaction, that’s generally all there is. A tiny, short connection with a person we had a tiny, brief time with. And that’s fine. At other times, though, this can continue. Maybe we’re talking to a new person at a social event. We have acknowledged each other as people (“Hi, how are you?”), we established that we can at least agree on one thing (there is weather outside!), now we gradually move into other topics.

Generally this is done step by step. One topic at a time, we can approach territory we’re less likely to agree on. One topic at a time, we find what we have in common. It let’s me find the Star Trek people who I can talk trek with, and the crafting people I can talk crafts with, and whatever other people I have things in common with, WITHOUT just starting a discussion about the moral implications of some specific Star Trek episode with everyone around me regardless of whether they’re interested in it or not. That is considered rude, particularly because we have established social rituals that exist to help us find other people who are like us. You know, like small talk.

I have spent years now injecting tiny bits of small talk into my micro-interactions, and the results have always been incredibly positive. Maybe I’ll compliment the cashier’s nails, or comment on how I walked to wherever I am in the rain and now I’m wet, or whatever. Something that’s pretty meaningless in the big picture, but as it turns out is incredibly meaningful in the small picture of day-to-day interactions with people.

As I type this I am made very aware of the fact that my skills here are going to be rusty because, well, I haven’t really gone anywhere other than the grocery store and doctor’s offices in a year. My social skills are getting way less practice than they used too. 

ANYWAY. In conclusion – please stop hating on small talk. Sure it can be annoying sometimes, but to be real – when I started realizing what it’s for I found myself significantly less annoyed by it. I already struggle to connect with people. Why in the world would I reject a tool that specifically exists to help us all connect with each other? 

No reason I can see.

* Oh no, now part of my brain is off thinking about how voids are literally defined by the absence of stuff, so can a void ever really be said to “exist” in a meaningful way and wow my brain just goes off in its own direction sometimes.

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Pushback Against Autistic Headcanons

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. 

PERIOD.

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Ranting on Autism Purely Defined as a Deficit

The image is kind of random, but I like capybaras, and two capybaras greeting each other just felt right. Because hi!

Hi! Starting with the elephant in the room – I’m trying to be back. Yes, it’s been some five years. Right now I’m just trying to get my brain thinking in blogging terms again. Turns out there are indeed some topics about which I have Things To Say. That said, I am very VERY interested in hearing about what you would like to see me talk about (or see anyone talk about). I can’t guarantee I’ll take every topic, but I really want to get ideas bouncing around in my head, and I really appreciate anyone who can help with that.

And now, on to the post itself.

I have so many thoughts on this particular matter, but in this instance let’s start with a study. (Disclaimer – I have read the abstract, but not the paper itself as reading full scientific papers tends to be a bit above my level) Here is a pubmed link to the abstract. To summarize the summary – some scientists did a study on information transfer between autistic people and neurotypical people. They did this by basically having different groups play a game of telephone with a story, and then seeing how much of the story remained intact by the end of it. They had chains of entirely autistic people, chains of entirely neurotypical people, and chains with a mix of autistic and neurotypical people.

The findings, which I imagine will not surprise a single autistic person, were that autistic people transfer information to other autistic people just as well as neurotypical (NT) people do. The problems happened in the groups that were mixed autistic/NT people. THAT was where information was most often lost. To me, this seems obvious, but I have definitely learned that this is NOT obvious to many NTs.

Now as we all know, autism is defined in terms of deficits, not differences. There are SO MANY aspects of this I could rant on, but I’m really going to try to focus on interpersonal interactions for this post. There is certainly plenty to say even on that.

This concept of autism as a deficit shows in how when autistic people are confused by something NTs do, it’s because we are deficient; we don’t understand. It shows in how when NTs are confused by something autistic people do, it’s because we are deficient; we are confusing. It shows in how often NTs are extremely aware of any tiny thing they do to accommodate autistic people, but are completely unaware of the measures autistic people take to accommodate NT society. Am I uncomfortable in a loud and chaotic environment? Do I struggle with sensory overload? I am deficient. Does an NT struggle and feel uncomfortable in an environment structured for me? I am still deficient. It is ALWAYS my deficiency.

So I like seeing a study like this, which actually does an excellent job highlighting the problems with this way of thinking. I think the best way I have to explain my thinking here is to tell you about some things people have told me in the past.

See, years ago I had NT friends, but only a few autistic friends. I knew I felt very comfortable with my autistic friends and we were able to communicate in a way that I could not with NTs, but it was pretty clear that my NT friends didn’t see that and weren’t aware of it. I would occasionally express that I thought it would be really nice to be in a relationship with an autistic person. From my perspective, it would give me intimacy with someone who thinks and functions much like I do. Someone who speaks the same language as me, metaphorically speaking.

Well, not everyone agreed with me on that. I was told, very bluntly, that that was a terrible idea, because I am just sooo rigid, and require sooo much flexibility from other people to accommodate my rigidity. That was honestly incredibly hurtful to hear, and I never quite knew how to respond to them. (it’s hard for me to get words to work in moments like that. It’s why I write) They were clearly extremely aware of any bending they did for me, and were extremely unaware of all the bending I did for them. And I did a lot of bending for them. But it seems that anything less than fully adapting myself to NT norms and standards counted as “rigidity” to them, and since I am unable to fully adapt to NT norms and standards, only NTs can deal with me. Yeah, I’m a little lost on their logic at this point.

In any case, I am in a relationship with an autistic person now, and it’s going exactly how I thought it would – MUCH EASIER than relationships with NTs. Our communication is better than my communication with NTs, we understand each other better and more easily than between myself and NTs. It aligns very well with what that study showed, which is no surprise to me at all, but might be a surprise to the people who told me that autistic people couldn’t possibly be in relationships with each other. 

I have no idea if those people even remember saying that to me. I’m still close to one of them, and I still remember their words and how much those words hurt. It’s satisfying to finally have science on my side, supporting what I’ve been trying to say all along.

We need new ways to look at autism. The deficiency-only model is flawed at its core, and it seems that science is finally starting to notice. I hope it continues. 

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Autism changed my religion

I occasionally talk about autism and religion, but not very often. I tend to believe that religion is incredibly personal – my beliefs are mine alone, and I have no interest in convincing other people to believe what I believe. So while my diagnosis of Asperger’s Syndrome had a profound impact on my beliefs about self and soul, it kind of feels awkward to talk about it here. Nonetheless, I think I’m going to anyway.

So to go over the beginning – it all started with my diagnosis, then with my reading, as I do. I learned that autism is neurological – it’s in my brain. I read about a number of studies showing structural differences between autistic brains and neurotypical brains. To put it simply – autism is physical. It’s right there in the structure of the brain.

Then, not long after, I heard someone in my religious group talking about the (fairly typical, in my experience) religious belief of, basically, “you are your soul, you have a body.”

Suddenly I realized that this common belief, one I grew up with and did not really question, did not fit me anymore. I do not see my autism as something simply attached to me, like a body that a soul happens to be sitting in at the moment. Autism is intrinsic to who I am. Which means my body is intrinsic to who I am. I cannot separate the two anymore.

At first this just caused confusion and some level of angst. I looked for opinions from other people, but I was still struggling to put the concept into words. Also, I was friends with many atheists who simply didn’t believe in souls at all and took the questions as a “nature vs nurture” thing. That was not what I was trying to get at at all.

Now, just so I will hopefully not be too confusing – my beliefs are fluid. They have been ever since I went away from christianity and towards paganism. I have notice that many people find the fluidity of my beliefs confusing, as well as the peace I have made with the fact that what I believe now will change over time, not always in predictable ways. For me, a change in my beliefs is not painful, it is simply part of life.

One of the first major changes was moving from a transcendent view of reality – where the physical and the divine are separate, towards an immanent view of reality – where the physical and divine are together as one. Since I cannot separate myself from my body, perhaps I cannot actually separate my soul from my body either. Maybe that’s not how it works. Maybe I’m not some coherent soul going from body to body through rebirths, or into some kind of afterlife with a deity. But then, what am I?

Well, my body is almost like a wave of matter through time. I am made up of the matter and molecules that I consume (and convert), and those atoms and molecules and cells of my body are constantly rotating through. I am always losing molecules (for instance, the outer layer of skin flaking off, as it does, and my body generating new skin beneath, as it does), and I am always gaining new molecules through my food and drink. Yet while the matter itself is constantly coming and going, the structure of myself remains much, though not entirely, the same. My brain continues it’s autistic structure, my skeleton stays the way it is, my basic layout does not change.

So now I seem to believe that my “soul” (however much I believe in a soul) is much the same. It is simply the current iteration of “me,” made up of… well, I don’t know yet. The current collection of some small portion of all that is sacred and divine. What are souls made of anyway? I also seem to have some version of panentheism going on. Everything is god – including the gods (so yes, I am still a polytheist as well). Everything is sacred, everything carries a portion of the divine. The portion of me that is divine is, basically, my “soul.” And perhaps when I die, my soul will disperse into the greater universe the same way my body will decompose and return to the earth it came from.

All that change, from one little (huge) diagnosis.

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Processing

I am going to talk about processing speed YET AGAIN because things have happened in my life YET AGAIN to bring it up, though I suspect they will always happen for the rest of my life.

Before I get into that, though, I want to side track a little bit. I have gathered that one thing people like to read about is autistic perspective. Not only on specific issues and the life (though yes, that is important) but just how we see the world and what just existing is like for us. Which is kind of cool and I like sharing perspective, but is also challenging. I have lived in my own head for my whole life. I have spent exactly 0 years, 0 months, 0 days, 0 hours, 0 minutes, and 0 seconds living in anyone else’s head. So yes, I know all about my own perspective, but what I know much less about is how that is different from neurotypical perspective. There are some things I can figure out are different for me just by looking at behaviors and the like, but there are lots more that I only seem to know about when other people point them out. Sometimes they are expecting something from me that I consider absurd and in discussing it we both learn that it is easy for neurotypicals but difficult for me, or we’ll be having a conversation and I’ll just casually mention something in my head and they’ll respond “wow, that’s totally weird!” or whatever else.

When that happens, I write about it. This helps me to work through it since I do a lot of my processing via writing, and apparently it is useful for other people to read about in order to understand more about autistic perspective. Yay understanding!

So anyway, this is a thing that I have found happens fairly regularly. Sometimes with the same person, over and over and over again. I’ll explain what things are like for me and why I do things the way I do them and they’ll be all “oh, ok, I see” and then a few weeks or months later, it will come up AGAIN. And AGAIN and AGAIN and AGAIN. Yes, it has gotten a little tiresome for me.

It usually goes like this: someone says something that hits a button or a trigger or something, and I feel hurt. Then I process that for what is, apparently, a Very Long Time (it is not unusual for this process to take weeks). Eventually I bring it up and ask to talk about it, sometimes needing to refresh their memory on the matter since to them it is often ancient history already.

There are usually two phases of response to this, one which varies wildly and the other which is pretty consistent. The first is just their response to me saying I am hurt or upset about the thing. Ideally they will be willing to sit down and talk with me and listen to my perspective about why and how it was icky to me and we work it out (happily, that is what happened the most recent time. sometimes people get very resistant to working it out or hearing me out which is a problem in and of itself).

The next part is always, ALWAYS, about the fact that I “waited” so long to talk about it. Sometimes people get upset with me or accuse me or “bottling things up” or being stubborn or something, and other times people just request that I bring things up right away when something hurts or bothers me.

And then it’s all kinds of uncomfortable, because honestly, I cannot do that. I rather wish I could, it sounds like people would respond much better if I did. But that just really, seriously, is not how I work and I cannot make myself work that way.

Instead I have to process. First, I have to notice that I am upset. This is usually pretty quick, but when I was younger it could take a while. Then I have to connect that emotion to it’s cause – the thing someone said or did. Usually it starts off fairly broad (“something about that makes me feel icky”) and then I have to work through exactly what it is that tweaked me (“oh, this word hit this trigger so when they said these words I actually heard that message which may or may not actually be what they meant”). Then there is a period of working through what I feel and whether or not I can work through the upsetness on my own. If I can, I don’t bother to bring it up because it just doesn’t seem worth it. If I can’t, then yes, I’ll bring it up as a thing to talk about. This is not a quick process. If there is something going on in my life that is demanding my processing power, then it can take even longer.

To make it more specific – the most recent example of this was with my psychiatrist. We were talking about ativan and how I was sometimes tempted to take it while I was dealing with my cat Genzi’s cancer because of how overwhelming and stressful and awful it all was. In that conversation (which happened over email), at one point she mentioned that dealing with stuff like that builds resilience. This happened to hit a trigger of mine and tweaked me kinda hard. Weeks later, when we were meeting in person, I finally brought it up, saying:

In an email convo about ativan we had several weeks ago, you said “the act of coping through tough periods builds resilience.” Only I heard “you are weak and need to be stronger so that you can stop being weak!” I really hope that’s not what you meant and I know this is a trigger point for me, but I’m hoping you can give me more words to clarify and reassure me that’s not what you meant. Unless it is what you meant. In which case, maybe nevermind.

Then we talked about it. Yay! Turns out that weak thing was totally not what she meant, and I talked a little bit about how I have a very sensitive trigger there and how it hit that trigger. THEN she brought up the thing about how she wants me to just bring things up right away instead of “waiting.” *sigh*

I know I’m saying this over and over and over again. Autistic people in general are often saying this over and over and over again. But seriously – we need time to process. I often go more slowly than other people in conversations. I take more time to think through things, and I need more time to find my words. Sometimes a LOT more time. Sometimes weeks. It’s not because I’m “waiting” or “hiding things” or whatever else. It’s because it takes me a while.

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Polyamory and autism

I am polyamorous.

I don’t really talk about it on this blog because it’s not really part of its overall scope. However, the intersection of polyamory and autism is within the scope of my blog, so I am going to talk about it here. When it comes right down to it, there really don’t seem to be any spaces out there for talking about this particular intersection, so I need to make my own. I don’t claim that my experiences are universal – this is simply how autism and polyamory intersect for me.

So I got featured in the tumblr Poly Role Models and you can read my answers to the questions here. I was specifically chosen because someone was asking about being poly while autistic and a friend nominated me for that, as I am both poly and autistic.

Now I am attempting to write a follow-up, so I can get more into the intersection of poly and autism. Honestly, though, this is kind of tough for me. While I know the two do interact and being autistic impacts how I am polyamorous, sometimes it’s hard to see exactly how when I am in the middle of living it.

First of all, forming connections is hard for me. Really hard. I know that the usual response to this is to explain to me that everyone finds it challenging to make connections, but that is an awfully dismissive thing to say. A major (arguably *the* major) point of autism is that it is a social development delay. I am 34 years old, but I do not have the social development of a 34 year old. Socially speak, my skills are significantly behind my age. They always have been, and they always will be.

Poly, on the other hand, often demands significant emotional and social skills. Above and beyond simply making connections, there is managing how multiple intimate relationships will interact with each other, all sorts of emotional entanglements and responses and consequences, figuring out boundaries and making relationships without the typical benefit of pre-made relationship templates that most people learn in childhood.

Some of these are easier for me due to autism, and others are more difficult. Far more difficult. As I mention in my answers to the poly role model questions, the social templates for relationships have been easy for me to move away from. Or at least, easier than what I see in other people. For instance, many people (including poly people) seem to have an assumption that being in a relationship means sleeping in the same bed with your significant other. It’s so much a default that no one questions it. Yet in my (11 years and counting) relationship with Nee, we do not sleep in the same bed. We do not even sleep in the same bedroom. It is an unconventional way to do relationships, but it works for us so we do it.

Part of the reason for this is that I have a very strong need for a safe space that I can retreat to, that is mine and only mine. Even within my own home I need this. As such, I have my bedroom, and even Nee does not enter it without my explicit permission.

Now let’s talk about communication. In the poly world, there is a social norm of communicating all thoughts, feelings, desires, etc to the Nth degree. There is an expectation that things will be brought up immediately and processed via conversation. While I am poly in that I desire and multiple intimate relationships, this is a part of the overall poly culture that I fit in with very poorly.

In a recent post on my blog entitled “Disconnect and Effort” I speak some of my difficulty in having conversations.

“Simple” things like conversation also take intense effort. I constantly run things through in my head, trying to detect codes or metaphors, decode those codes or metaphors, figure out replies, and how to take the concept of the reply and turn it into words, and how to arrange those words so that they make sense, and how to arrange my facial expression in an appropriate way, and I have to do it all fast enough that the conversation seems normal to them. It’s HARD. Even when I can manage it, it is exhausting and sometimes downright painful.

Doing my emotional processing in the context of a conversation has always been disastrous. I simply cannot do it. Instead, I must defy the polyamorous social norms and do my processing internally, quietly, away from other people. I also must take time to do it – days or weeks or even months is my normal. It is only after I fully process that I can go ahead and talk about whatever it is that needed processing.

Sometimes people get upset with me under the idea that I kept things from them. The fact is, though, that when an issue is complex or difficult, I am often entirely unable to voice it until after I work through it for a while. Moving thoughts from their typical abstract form into a word-form can always be tricky, and in some situations it can take a good long time.

I also want to talk about the rest of the world a little bit. Now, it is very normal for your typical monogamous person to be very confused about polyamory, and I’m sure all polyamorous people have gotten icky comments from people who definitely Do Not Get It (several of which can be seen on this polyamory bingo card). Being both poly and autistic, with all the associated difficulty in developing any relationships at all, can get me my own kind of comments, on top of all the usual ones.

When people find out that I am both poly and autistic, particularly when they find out that I deeply struggle to form relationships, they tend to inform me that I should just be happy that I even managed one relationship because even that is more than many autistic people manage to do. They basically tell me that because I am autistic, I should not be poly. When they do, it tends to seem like they are simply telling me to know my place. That my place as an autistic person bars me from more involved forms of relating, and I shouldn’t even try. This is so hurtful, but I have yet to find any neurotypical spaces where I can be safe from this kind of commentary. Any time I out myself as both poly and autistic, this is the sort of comment I fear.

Returning to poly social norms, there is also the issue of poly social spaces. I used to try to be active in poly communities, both online and IRL. What I found was a community that was extremely unwelcoming, and at times outright hostile, to mental illness and neurological differences. The general concept that people like me should know our place existed there too, with the idea that people who struggle with mental issues just shouldn’t be poly. With so much speaking out in favor of getting away from monogamous norms and getting off the relationship escalator and whatnot, I was sometimes shocked at their narrow acceptance of neurology. I often felt hurt at things I saw and how some individuals treated me and the overall attitudes I saw towards neurodiversity, and eventually I just gave up. I no longer go into poly spaces, as they are decidedly unsafe for me. (of course, there is also the point that the poly community often has issues with otherness in general, being largely white, middle aged, middle class, and abled, but that is getting outside the scope of this post)

I know that autism makes things about being polyamorous more difficult for me. Sometimes in inherent ways (like communication and connection) and sometimes in social ways (the ways people treat this intersection). The fact of the matter is that intimate relationships are important to me. Real, deep, human connection, however difficult it is for me to form, is important to me. I am poly because it is the best description for how I approach love and relationships.

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Disconnect and Effort

Sometimes (a lot of times) (all the time) I feel like there is a vast gulf between me and the rest of humanity. Or at least neurotypical humanity, which seems to be most of them. I’m sure there are many reasons I feel such a disconnect – I am not silly enough to try to claim there is only one “real” reason that is the cause of it all. That said, I think I have figured out one of the reasons I feel such a disconnect.

That reason lies in the effort it takes me to socialize. When it comes down to it, very nearly all human interaction requires HUGE effort on my part. It is extremely normal for me to spend all of my resources managing social interaction to the point of complete and utter exhaustion that requires over 24 hours to recover from. This is the life I live, and it will never change. Going to a religious observance or a LARP takes literally everything I have.

“Simple” things like conversation also take intense effort. I constantly run things through in my head, trying to detect codes or metaphors, decode those codes or metaphors, figure out replies, and how to take the concept of the reply and turn it into words, and how to arrange those words so that they make sense, and how to arrange my facial expression in an appropriate way, and I have to do it all fast enough that the conversation seems normal to them. It’s HARD. Even when I can manage it, it is exhausting and sometimes downright painful.

While I like to socialize one-on-one, even that is often extremely draining. The demands of conversation, of facial expression, of managing the constant bombardment of PERSONNESS that is right there all wears on me. It’s a lot of effort. It’s work.

But the primary point I am trying to make here is that putting lots of effort into socialization and friendship and even just acquaintanceship is normal to me. It’s standard. It’s just what I need to do if I’m going to interact with people.

And here’s the important part – it’s NOT normal to neurotypicals. I think in much of my past I kinda knew that, but it didn’t really sink in. I would ask for a level of effort from other people that was really only a fraction of the effort I put in all the time, and the response would be anger! How dare I ask so much from them! Nor has this been a one-off occurrence. While the response is not always anger, I have definitely gathered over the years that asking people to put in even some of the effort I put in is just asking too much. It’s being unreasonable and demanding.

Sometimes people will speak of putting in lots of effort. And I get confused, because at the very least, what I see is still less, or maybe equivalent to, my standard effort in socialization. I’ll wind up thinking something like “that is a special effort? but I do more work every time we interact.”

I know that socialization isn’t necessarily easy for neurotypicals. “We all find it hard” would be a very predictable but extremely horrible response to this post. Yes, we all find it hard. What I hope you can take from this is that I find it *much harder* than your average neurotypical. I have learned to no longer be shocked when a neurotypical can go to a LARP, and then go do a thing the next day. I cannot. I probably never will.

So yeah. I feel a disconnect. I’m over here and y’all are so far away, sometimes I think it’s no wonder I can’t bridge that gap. And neurotypicals have so many people who are so near, I suppose it is not surprising that most of them have no interest in doing the work required to build a bridge and meet in the middle. (on a side note, neurotypicals have also told me that I should not try to connect with other autistic people, because autistic people would be too rigid and I need people who can flex to my autistic weirdnesses, or something like that. apparently I’m doomed)

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