Tag Archives: autism

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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Dragged in two directions, neither of them good

I feel like I’m in the middle of a tug of war, being hauled on by two groups, neither of which actually care about me or what I have to say.

So there’s a topic that has been churning around in my head for a while now. It’s the one where people will say “ah, but really we’re all a little bit autistic” and how horrible it is to say. I’ve really been struggling to give voice to that, why it’s so icky, and eventually I went and asked for help. In the process I learned that I am not the only person who struggles to put it into words.

However, as this has all been churning around, another topic sprang to mind, and that’s the one I’m going to talk about now. Hopefully sometime soon I’ll figure out how exactly to explain that no, we are not all a little bit autistic.

So increasingly I feel like I am being tugged in two different directions, both of them icky. And trying to pull back on either of them risks me falling in the other direction. Or, just as bad, risks people thinking I am going in the other direction, even when I’m not.

See, on the one hand we have the people who talk about autism as a “tragedy.” They’ll use words like “disease” or “holocaust” to describe us. They’ll talk about us as though we’re lost or broken, diminishing our lives and our personhood to nothing more than fear mongering talking points. We’ve all run across it, I’m sure. I’m sure many of us have been hurt by words like that in some way or another. So we resist. We say we aren’t a tragedy. We explain we have strengths. We say we are different, not less. We insist our voices be heard, even as they try their best to silence us.

And people see us resist those tactics, and just wind up thinking we are on the other end of things. The end where people say things like “we’re all a little bit autistic” as though autism is nothing more than a bundle of quirks. This is the side that diminishes our very real struggles, how much things can hurt when you’re autistic, how extremely difficult some things can be.

I’ve had people see that I am against the “cure” idea, and accuse me of being against therapy, treatment, and other sorts of help. I’ve seen people claim that “different, not less” is treating our differences like hair color – something shallow and cosmetic and not actually a major impact on one’s life. At times when I’ve explicitly rejected people saying “we’re all a little autistic” I’ve had people able-splain at me that since it’s a spectrum, everyone is on it.

I’m tired of feeling like I’m the middle of this terrible tug-of-war, but I don’t know how to leave. I don’t know how to make it clear that I’m not on either side – that I see BOTH sides as being harmful. And I know so much of it is because so few people are willing to listen to autistic people. When they do, so many come in with their preconceived notions of what we’re saying, with the straw men that have been constructed by the people in that tug-o-war, that they are more interested in accusing me of saying things I’m not than in actually listening to what I am trying to communicate. It’s frustrating. I don’t know how to fix it.

So I guess for those of you that do listen – thank you. Maybe we’ll find a way out from those two sides and forge our own path.

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Dental work while autistic

I recently had to go to the dentist to have a broken tooth removed, and I thought it might be worth talking about it a bit from my perspective, specifically from an autism angle.

There were some things I thought they did well and others that they could have done better. To be fair, though, I did not tell them that I am autistic, so I have no idea if they would have done things differently if they had known.

When I first showed up for my appointment, they were terribly busy. So busy that they did not call me back until an hour after I was supposed to have had my appointment. This was very stressful. In the past, I probably would not have made it. As it was I managed to cope, but it was overwhelming and unpleasant. A huge thing that would have helped would have been better communication from the front desk. For instance, a simple comment like “We are really backed up today, you will probably have to wait an extra [amount of time]” probably would have made it easier for me. As it is, I spent the entire hour tensely waiting for them to call me, and eventually fretting that they had forgotten about me.

Once I did make it in, communication was an interesting mixed bag.

I required two injections in my mouth to numb me up. The first one had very little warning, with no explanation of how it was likely to feel. I found that was difficult to cope with. For the second one (given by the same doctor, interestingly enough), he told me about what it would feel like and gave some tips on breathing through it. Knowing what I could expect helped a lot. Apparently most people find the second injection more difficult to cope with than the first, and the doctor was surprised when I told him it was the other way around for me. I suspect the communication (or lack thereof) explains this.

Before getting to work, the doctor did make a point to let me know that I would still feel pressure during the procedure – pain can be numbed, but not pressure. He did not, however, tell me a number of other things I would experience, such as the general physicality of the procedure, or the cracking noises. Luckily, I had read up ahead of time of what I could expect – otherwise it would have been much harder for me than it already was.

One thing I could have done for myself was take a lorazepam (an anti-anxiety medication) beforehand. As they were doing the procedure my anxiety suddenly hit me very hard, mostly manifesting as rapid heartbeat and rapid breathing, along with some amount of physical trembling. Just to be clear – this would have required pre-planning and I would have wanted to clear that use with my psychiatrist first. While anxiety issues are not themselves autism, it is common for them to go along with autism and it can be helpful to be prepared for that.

Aftercare is also giving me a few issues. After dental work it is important to keep a soft diet for a while, but I have texture issues that prevent me from eating anything mushy. This is severely limiting my diet. So far I have been eating jello, ice cream, noodles, and fruit cut into small pieces. Again, pre-planning is helpful in cases like this in order to find the best solutions to multiple issues.

Finally, Nee has been incredibly helpful to me. I did my best to plan ahead of time ways I could take it easy, but (again with communication) I was unclear just how functional I would be after the procedure. As it turns out, I was only barely functional at all. Nee helped get me what I needed so I could just sit or lay down, and also helped me know what I needed to do if I was not figuring it out for myself. Which mostly meant informing me that I should take a nap.

So basically, I would have really appreciated more communication from the dentist’s office. I don’t do so well with things that are unexpected or unplanned, so making extra sure I always knew what was going on or about to happen would have been a huge help to me.

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Getting more intense

This is just a personal experience post, about how things are like for me. I have fairly acute senses. Actually, I’ve always had fairly acute senses. Just as a quick run-down:

My eyes are quite sensitive to light.

I can hear into a much higher range than most people.

I have a very sensitive nose and seem to be able to smell things other people can’t.

I don’t know if it’s really a sensitivity thing, but I cannot deal with being lightly touched. I find it incredibly painful.

This has always made things rather, shall we say, interesting for me. Sound always seemed to be the big one. I can get overwhelmed and in pain from sounds that no one else can hear. I’ve had people think I was being sarcastic when I was crying in pain with my hands over my ears, because they just couldn’t hear the sound that was causing me pain. Many neurotypicals seem to have a lot of trouble wrapping their minds around how I can be struggling with sensory overload just from walking down the street, but it’s always been a thing for me.

Thing is, though, I’ve noticed for several months now that everything has been getting even more intense.

Sounds that used to be fine are now starting to hurt. Everything seems louder than it used to be. For instance, I’m turning down the volume on the tv more and more, I’m finding it easier and easier to hear Nee (who can be extremely soft-spoken), and I’m starting to have problems with my keyboard being too loud. It isn’t even a clicky keyboard, but I’m finding myself wishing it was much quieter. Sadly, being that I insist on using a split keyboard, the options out there are slim. Most upsetting is that I’m having trouble with bubblewrap! Popping them is very satisfying for my fingers, but the sound hurts.

I’m finding similar things happening with sight, smell, and even taste. Everything is just so much more than it used to be! As it had already been so much, the moreness is being quite challenging. I’m not sure why it’s happening, though. The anti-depressants are my best guess, but it’s really only a guess.

Though really, the reason why it’s happening is of secondary concern at most. It can be tempting to focus everyone on why something challenging is happening, but it often does little good. What I need to focus on is finding new ways to cope. I may have to go shopping for a new keyboard, maybe even re-adjusting to a normal keyboard rather than this huge split one. I’ll probably have to start wearing headphones or earplugs more. I may need to wear my prescription sunglasses around, when before I only wore them to drive.

What do you do to deal with sensory overload or particularly acute senses? Also, I’ll be doing my own googling, but do you happen to know of any extremely quiet keyboards?

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Let’s be more understanding

There is a thing that people do that I do not like. And by “people” I mean “everyone.” Me, you, that random stranger down the street, your friends, your family, everyone. EVERYONE. In my general efforts to increase my compassion, I am trying to be more aware of it and to stop doing it. Refraining from doing so takes effort and can even be uncomfortable, but I believe that it is worth it.

That thing being – when seeing people do a thing that we do not understand, deciding that the thing is stupid or worthless.

Yeah, this isn’t really an autism thing (though I do plan to relate it back to autism, of course. this is part of my speaking out). It’s an everyone thing. I talked about it a little when I spoke of social rituals. I see autistic people looking at unfamiliar social rituals and deciding that the ritual they are looking at must have no meaning, simply because we cannot see the meaning. I see it so often. I’ve done it myself. It’s such an easy way to think.

I’ve known people who thought that simple “thank you’s” had no meaning, because they could not see the meaning, so they did not say “thank you.”

Many people have declared the “how are you?” ritual stupid and meaningless, because they could not see the meaning (to reiterate – it is a way to ritually acknowledge a person’s humanity if we are not otherwise strongly connected).

I’ve seen people declare the fast-paced chattering of teen girls meaningless, because they could see no meaning.

And that’s so easy to do. Such an easy thing to think. But think about the times when it is turned against autistic people.

When people cannot see why we flap our hands, so decide it must be meaningless.

When people cannot understand why we may need to escape from sensory overload, so decide that the best idea is to just force us to stay in the situation.

Or, going a slightly different direction, when people cannot understand why we cannot understand some social formula, and so assume malevolence in a simple mistake.

It becomes easy to see the problem when we see it used against us. However, the problems are not single, isolated things. They are part of an overarching behavior set that is entirely pervasive in society (at least American society. I cannot speak to other countries or cultures). I mean, even the sentence “I don’t understand why people do that” is code for “that thing people are doing is bad.” It’s used even when the thing in question isn’t harming anyone. When the action in question is just *strange* to our eyes, in some way.

I want to advocate for acceptance of our autism. This means that society needs to learn to accept how we are different. People need to learn that just because we look or act differently, that doesn’t mean the things we do have no meaning. A neurotypical may not find any meaning in flapping their hands, but that is not adequate reason to conclude that no one can find meaning in flapping their hands.

The thing, though, is that because I think it is a part of this overall failure to accept differences just in general, it is that overall failure that needs to be addressed. So if I don’t understand a thing that a person is doing, I make an active effort to conclude that the problem is on my end and not theirs. It is my failure to understand, not their failure to make sense. As I mentioned above, this can be uncomfortable. It is easier to blame other people so that I do not have to see shortcomings in myself. Especially when society at large is so quick to shove all my shortcomings in my face and blame me for every misunderstanding, every cruelty someone perpetuates on me, every awkward moment that happens between me and anyone else. People blame autism far too often, but that is a rant for another time. The point is, we want people to accept their failure to understand and not shove it onto us. We want people to accept us, and realize that if they want to understand they will need to take the time to do so.

This means that we need to be willing to do the same. It is not ok to ask others to do a thing that we are not willing to do ourselves. So when I see something I do not understand, I assume that the fault is mine. I do my best to accept, regardless of my level of understanding.

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Making a point with pictures

The following is a picture-heavy post. All images are either creative commons licensed or mine.

These are facial expressions.

Image is of me in pigtails, with a happy expression on my face.

They are a way that people use their faces to express themselves.

Black and white image of a smiling elderly man. Image by alvbarito on flickr.

They are frequently involuntary – for NTs, at least, facial expressions just seem to happen on their own.

Image is of a man with an expression of pain on his face. Image by chrisjl on flickr.

Even babies have expressions, and they certainly aren’t thinking about exactly how to arrange their face.

Image is of a baby looking mischievous. Image by philscoville on flickr.

We also express ourselves through our bodies.

Image is of me going in for a handshake.

Much of this is also involuntary or unconscious.

Image is of two men – one standing and one sitting. Image by mr_physics on flickr.

We even have a phrase for it. “body language”

Image is of me, looking very tired on a horse.

It’s not considered bad or wrong or something to get rid of.

Image is of a man and woman acting flirtatious towards each other. Image by junkchest on flickr.

This is body language too.

Image is a drawing of a person smiling and flapping their hands.

We shouldn’t treat it any differently from all the rest of the body language out there. Ultimately, it’s really no different.

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Autism Awareness

So there is a lot of talk about how we need to go beyond autism awareness and into autism acceptance and autism respect. I TOTALLY AGREE with all that. So much. Acceptance is super important.

But then I see people spreading all sorts of misinformation and I realized that being aware that there is a thing called autism does not mean being aware of what autism actually is. I see parents talking about their difficult experiences with their autistic children, and then they cite a bunch of things that are not autism. So here is my quick, messy, off-the-cuff post for autism awareness, talking about what autism is and isn’t.

Autism IS a developmental disability. It involves all sorts of things that are difficult and challenging. When I speak of autism acceptance, I want people to accept that we need help and accommodations, and I want people to work towards helping us. Autism is primarily defined by social difficulty – that is the common factor. It can also include clumsiness, developmental delays, executive dysfunction, and other things.

That said, there are many things that autism is NOT. Autism IS NOT anxiety. Autism IS NOT depression. Autism IS NOT epilepsy. When autistic people are abused, it is the fault of the abuser, not the autism. When autistic people are bullied, it is the fault of the bully, not the autism. Yet somehow, over and over and over again, people talk about these Not Autism things when they are trying to explain why autism is bad.

So just to be totally clear, STOP BLAMING AUTISM FOR TOTALLY SEPARATE THINGS.

Now, to look at this more personally, I am autistic. I have fairly serious depression and anxiety. It is true that depression and anxiety often have a higher incidence rate among autistic people. Of course, they also have a higher incidence rate among people who are female, which I also am. It would be utterly and completely absurd to blame “femaleness” for depression and anxiety, or seek a cure for “femaleness” because things like depression, anxiety, abuse, sexual assault, etc all have a higher incident rate among said female persons. Yet somehow, so many people do exactly that when it’s autism. Then they wonder why we say they are demonizing autism. Just to be clear, it’s because they are blaming autism for things that are not autism, and are not the fault of autism.

Finally, I have seen people say we are terrible for trying to focus on the strength of autism. On things like ability to focus, ability to take in large quantities of information and process that information over time, ability to identify patterns, high memory recall, ability to notice details, etc. Yet people try to silence us for speaking of that, insisting the conversation focus only on how broken we are. THEN, of course, they will go on to talk about how we have a low employment rate.

Which is true, we do. Except it seems to me that getting word out that we have strengths and convincing employers that autistic people are worth hiring is a great way to address the employment problem. As such, I can see no sense whatsoever in all these attempts to silence conversation about our strengths. Unless, of course, your goal is to shame autism, spread misinformation about autism, and generally talk about autism as some terrible, horrible thing. Usually bringing up all those things that are Not Autism in the process.

So yeah, let’s have a little more autism awareness. Including awareness of what it is NOT, and awareness of what we can contribute when our difficulties are accommodated.

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