Category Archives: opinion

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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Ramble on Stimming

This post might be a bit unfocused. We’ll see how this goes.

I’ve seen some disagreement in some of the autistic spaces I’m in around the idea of “stimming is communication.” Apparently some of us are really against that idea. It’s rather made me want to weigh in with my take on the matter.

And my take is – stimming is communication, in the same way that other forms of body language are communication. Some of the arguments against stimming being communication is that sometimes (or many times, or often) stimming is done without the intent to communicate. Apparently to some people, that means it’s not communication.

I disagree. Humans communicate all the time without necessarily putting intent behind it. Over on the neurotypical side, people generally agree that body language is communication. And sometimes NTs will put deliberate effort into their body language, so that it communicates something that they choose. However, many times body language just happens, without forethought explicit choices involved. And when that happens, it’s still communication. NTs like to talk about how up to 75% of communication is nonverbal – and they’re meaning that for themselves. Their own communication is dominated by nonverbal cues. Facial expressions, body language, tone, things like that.

I am firmly of the opinion that stimming is (among other things) body language. When an NT laughs, they are probably not thinking “I wish to communicate my amusement, so I am going to make this particular sound to convey it.” Laughing is simply a natural result of amusement. Same with stimming. Whether I’m flapping my hands because I’m excited or rocking because I’m overstimulated, they are natural results of my mental state. They are also expressions of my mental state, and, among the various things they do, they serve to communicate that to others.

When I say that stimming is communication, one of the things I mean is that NTs should learn to pay the same kind of attention to it that they do to other forms of body language. I am saying that all behavior is communication, and stimming counts too. I’m saying that stimming is another form of body language, and that is one of many many reasons why we should stop trying to stamp it out.

When I stim, I am generally not thinking about communication. I’m excited or happy or stressed or overstimulated or maybe just needing to rock. Frequently I’m alone, so communication doesn’t make any sense. However, I still say that stimming is communication, the same way that facial expressions are communication. I say this because intent or not, they can communicate information to others, if there are others around who know how to read it.

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Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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Words matter to me

I want to talk a little about why I like labels so much. I mean, I’ve talked a lot about labels and their usefulness and whatnot, and I have my arguments for why labels are more helpful than harmful, but that’s not quite what I want to talk about today. This time, I want to be more personal. I want to talk about why I like them *for me.*

When I explore things like “am I aromantic?” I get people telling me that the words aren’t important and I should just live my life. I find that incredibly frustrating, because it is completely invalidating to how I process and deal with things. It actually seems a bit ironic because I usually get that kind of feedback from people who think in words, while I, the person who largely thinks in concepts and sensations, wants the words for labels and identities.

I’m not sure why it’s working that way. I would have thought that word-thinkers would be all about their words, since they use them to think, and my less-wordy self would be less interested in words. But it just doesn’t seem to work that way. I may not do my primary thinking in words, but I still LOVE WORDS SO MUCH. Maybe the fact that I often need to actively translate my thoughts into words to be able to communicate them to other people leads to me appreciating words to a rather extreme degree.

What I really want to say, though, is that having words for things helps me understand them. Being able to grab onto a word let’s me put down a signpost, so I can anchor my rather abstract thoughts into something concrete. I’m not always very good at bringing things together into coherent wholes, and words help me do that.

Ok, here’s an obvious example – “Aspergers.” Before I had that word, I was still myself. I was being who I was for my whole life – who else would I be? But there was a lot about myself that I did not understand, and my behaviors and challenges and difficulties I had often felt random and spread out and incoherent. Gaining a word let me take what was very chaotic for me and find an order and coherence to understanding what was going on. That was REALLY helpful.

This is what words and labels do for me. They don’t confine me, they help me understand what otherwise is often confusing.

To draw another analogy – I once heard that autistic people often do not see wholes very well or easily. We see pieces – all the pieces – and it can take a lot of work to bring those pieces into a whole that we can make sense out of. This is true for me, at least a little bit. How about some more examples? One obvious one, that I’ve written about before, is faces. I see faces in pieces rather than wholes. I am actually not capable of seeing a face as a whole, which can be problematic at times. As another example – ok, story time. I was visiting a friend’s house and she was showing me around. She brought me into one room without announcing what it was first. For a good 30 seconds, I looked around only seeing details – “dresser, dresser, shelf, door, bed, another door” until suddenly it clicked – “BEDROOM!” I had the word for the room, and suddenly all those details and bits and pieces came together into a coherent whole.

So for me, words matter. It’s the opposite of helpful when people try to tell me to not worry about the words, because if I am pursuing finding the right words for something, you can believe that there is a reason for it. Usually that I need to find a way to bring coherence to a number of disparate things that are difficult for me to manage until viewed as a whole.

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Compassion

i found it this way

<image is of a single blue flower resting on blue gravel. I’m not sure why I’m using this image, but somehow it seemed fitting>

I want to talk a little bit about compassion. I’m not entirely sure that it is within the scope of my blog (though Nee assures me it is), but it’s been on my mind a lot so I’m writing about it anyway.

A few things got the thoughts started. One was when a commenter called me compassionate a few posts ago (thank you, kind commenter! I very much appreciate it!) and another was some stuff on facebook that I am reluctant to elaborate on because it entirely involved other people. Basically, it was people talking about how they feel compassion, and I had thoughts that took a while to make it to words, as they do.

I think that compassion is important. I also think that compassion is work, and is frequently not at all an easy thing to do.

The type of compassion that most people seem to talk about is compassion for people who are hurting in some way. Typically the hurt is obvious and acute, and yeah, we feel for those people. It’s important to feel for people who are hurting. However, this is the easiest kind of compassion there is. I want to talk a little bit about more difficult compassion.

Compassion gets much more difficult, and it not often talked about, when it’s for a person who’s being annoying. Compassion is very difficult to give to a person who hurts us.

One I personally find incredibly tricky is compassion for a person who is hurting in a similar way that I am hurting, but distinctly less than me. For instance, Nee and I both struggle with loneliness. However, he has more people in his life than I do. Sometimes, when I am really feeling the pain of my isolation and he’s just come home from socializing without me, it can be really hard for me to feel compassion for the fact the he is lonely too.

Compassion means always assuming the best in people. It means that if someone does something that you find hurtful, ALWAYS assume that it was unintentional, and work from that baseline.

Compassion means believing that people have good reasons to do or believe whatever it is they do or believe, even if we don’t understand it or disagree with it or find it offensive. Even if they are demonstratively wrong, even if they are hurting people, compassion means trying to find the root of what is going on to address it. Compassion means approaching people with love and a belief that they are *not bad people,* whatever else is going on.

Personally, I find this profoundly difficult when it comes to issues I am passionate about, or I am personally hurt by their actions. Sometimes I just can’t do it. In fact, while I definitely think compassion is important, I also think that compassion means understanding that sometimes people need to take care of themselves first. The person who is personally hurt by racism should not have to stop and try to experience compassion for their oppressors.

Now, as much as I would like to be a compassionate person, sometimes I just can’t. Frequently, I can only manage compassion when I take a step or two back, so I am not so personally impacted by what is going on.

I do think that compassion for those are are hurting comes first, and is far more important than compassion for those who cause hurt. However, that does not mean that the latter is not important at all or should simply be forgotten. I think that changing the world for the better is going to involve lots of compassion, including the kind of compassion that is difficult or painful.

Finally, I want to point you towards an example of the kind of compassion I am talking about, that put it much better than I ever could. It is compassion without concession – it demonstrates that showing compassion does not mean giving up, or conceding defeat, or saying that the other side is correct. It is, simply, showing compassion.

You may have read it already: The Distress of the Privileged. The author uses the movie Pleasantville as an example, to show the distress of one who is privileged – in this case, the character George Parker. He enjoyed a privileged position in his society, and found himself lost and confused when suddenly the people around him started to reject society and his role in it.

“George deserves compassion, but his until-recently-ideal housewife Betty Parker (and the other characters assigned subservient roles) deserves justice. George and Betty’s claims are not equivalent, and if we treat them the same way, we do Betty an injustice.”

Sometimes I think that people fear that showing compassion means losing the opportunity for justice, but I do not believe that is the case. Compassion is still important, and can even be a tool for justice. And no, it isn’t always easy.

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Self-Diagnosed

This is a topic I am still learning about, but I am very slow at it because it is often seen the most in communities, and I am not very good about participating in communities. I don’t actually expose myself to many communities, and those that I do, I tend to lurk in.

However, despite all that, I do see things now and then, and there’s one trend in particular I want to comment on. That being – the apparent friction between those who are officially diagnosed, and those who are self-diagnosed.

Basically, there seems to be a lot of hostility from the officially diagnosed towards those who are self-diagnosed. Many people seem to think that if you are not officially diagnosed, that your contributions towards discussions or your experiences are less worthy to be shared.

The inspiration for this post actually came from this thread (warning – it’s a link to reddit). The OP honestly seemed to believe that officially diagnosed people were the ones who would know what they are talking about or have actually been through experiences, while self-diagnosed people have not.

Honestly, I find all that kind of sad and alarming. There are any number of reasons that I person may be “self-diagnosed” and not officially so, and a lack of official diagnosis does not inherently mean that the individual in question must not know what they are talking about or does not have anything of value to share.

So I have seen roughly three types of self-diagnosed people. These are rough generalities and I’m sure there are people I’m missing, but I can only speak to what I’ve seen and how I’ve categorized it all in the way that makes sense to me.

1. Those who have spent months or years researching Asperger’s/autism, looking at their own life, and seeing if it makes sense. There could be any number of reasons they do not have an official diagnosis – maybe they lack the money or support, maybe they cannot find a place that will diagnose adults, maybe they are scared, maybe they are old enough that they don’t see a point to an official diagnosis, and who knows what else. While the diagnosis may not be official, it still has a great deal of thought, effort, and research behind it.

2. Those who know that something is going on making them different, but aren’t sure what. They’ve stopped over in autism land and perhaps believe for a while that it is the best explanation for whatever is going on. From what I’ve seen in this group, they tend to continue to do research and trying to figure themselves out, and either migrate into group 1 or decide that autism is not the most likely explanation and look elsewhere.

3. Those who are socially awkward or rude or sometimes just jerks, who claim asperger’s as a convenient excuse for their behavior. It’s the “I can’t help it, I have aspergers!” line I’ve seen all too often when someone is called out for being an asshole.

The main problem is, obviously, group 3. Before my official diagnosis, I could have probably have been said to be in group 2 for a while, and eventually group 1. Or well, I could have if I had ever self-diagnosed. However, group 3 kept me away from that. Seeing the fad of Asperger’s come and go left me with a lot of anxiety around that label for quite a few years. I didn’t want to be in group 3, I was often repulsed by what I saw, so I just stayed away from everything for a long time.

Thing is, if I had spoken up for help and people had simply assumed I was in group 3 and treated me accordingly, it would have done a lot of damage. When we discount ALL who are self-diagnosed because of the actions of a few, we are throwing the metaphorical baby out with the bathwater. When we decide that being self-diagnosed means you don’t know what you’re talking about or you haven’t had similar experiences, we do a disservice both to them and to ourselves. We reject people who may need help or have need of community, and we deny ourselves the opportunity to hear more perspectives.

We reject the person in their 60’s who’s lived a life of difference and difficulty, who finally figured out why they are so different and why things are so difficult, but cannot get an official diagnosis due to age or income or whatever else.

We reject the teen who is struggling with unsupportive parents and an uncaring school system, desperately trying to learn how to manage autism without any supports in place.

And just to be clear, anyone who is diagnosed as an adult (and there are many of us) has a good chance of spending time in group 2 (or a similar place, regardless of whether or not we explicitly call ourselves “self-diagnosed”) for a while. We’re figuring this out largely on our own, and it can be tough when access to services almost exclusively focuses on children.

Yeah, I’ll agree that something needs to be done about that group 3, giving us all a bad name by offering up autism and “I can’t help it!” when they’re just plain being rude, but I seriously do not believe the solution is to reject all who self-diagnose.

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I’m not going to fight my own mind

Let’s talk a little about metaphors. Metaphors are pretty cool, and they are pervasive in our society. In fact, neurotypicals have a tendency to not even think about them or sometimes even be aware that they are speaking in metaphors. We are so surrounded and immersed in metaphor it’s like the air – something barely even thought about.

Unless something in the air doesn’t quite fit, or you can’t seem to breathe right. Suddenly the air is very much on your mind (talking about metaphors using a metaphor. yep). When you’re autistic, metaphors don’t flow as smoothly as they do for other people. I know that I tend to be more aware of them than many people around me.

Now, I am here to talk about one particular metaphor. One that is rarely questioned (though it is sometimes, and the questioning is growing) but I think causes many problems. That being – the “battle” or “enemy” metaphor for illness. A friend shared this really great article going over many of the problems with the utterly pervasive battle/fighter/war/enemy metaphor that is used in medicine. Thing is, a metaphor is not simply a word thing, about helping us convey a concept. The metaphors we choose to use actually play a really deep role in how we conceptualize ourselves and the world around us. If you want to read more about that, read the book Metaphors We Live By, by George Lakoff and Mark Johnson.

With illness or disease, we push people to view the illness as an enemy to fight. We say the person who is sick is a fighter, and encourage them to view themselves this way. Medicine, doctors, tests, etc all become weapons in this fight. I think we hope that this metaphor will help people in dealing with their disease, but there is growing evidence that this is actually not helping. From the previously linked article:

“1970, Polish physician Zbigniew Lipowski introduced a framework for characterizing the meaning that patients ascribe to their illnesses. These categories include viewing illness as a challenge, value, enemy, or loss, among others. Since then, studies that have interviewed cancer patients around the time of diagnosis and followed them for years after have found that patients who view their disease as an “enemy” tend to have higher levels of depression and anxiety, and poorer quality of life than those who ascribe a more positive meaning. They also tend to report higher pain scores and lower coping scores.

Which basically means – this metaphor is not working.

However, I also want to look at it a bit in terms of the things I deal with – autism, depression, and anxiety. These are all things to do with my mind. Literally – my brain. They are all happening right here in my head. Now, with autism it is obvious. While some people out there still want to “fight” autism, I find it utterly bizarre. You cannot separate autism and me, so there can be no fighting autism without fighting myself. When you tell a child that autism is an enemy, you are telling them that their own brain is their enemy.

For me, this even extends to depression and anxiety. They’re in my brain. I don’t want to fight my brain. They’re part of the chemicals my body makes. I don’t want to fight my body. If I really, REALLY look at them, in the end if they are my enemy then so is my body. I am not interested in making my body my enemy.

On top of that, for me they are chronic conditions. In the war metaphor the best I can hope for is a stalemate. I will never truly win. What a terrible way to view my life. I don’t want to see myself as fighting a war I can never win.

So I’m not going to.

Not that it will be easy. It is SO easy to view my body as my enemy, my problems as my opponents to defeat. My culture is absolutely saturated in this metaphor and there is no getting away from it. This can only work as a conscious and deliberate choice on my part to reject my culture’s dominant metaphor and replace it with my own. It is a choice to accept myself, with all that it entails. It will be hard. It will take work. I believe it will be worth it.

Therefore, depression and anxiety are challenges. They are part of my mountain to climb. They are problems that I can find a solution for.

Ok, I actually want to look at that last one a little more closely. The book Metaphors We Live By that I mentioned before had something really interesting to say about the phrase “solution to my problems.” It involved a non-native english speaker hearing the phrase, and seeing an elegant metaphor in it. One that we don’t actually use, but I think is much better than the way we currently use the phrase.

What if by “solution” we meant it in the chemistry sense:

  1. the process by which a gas, liquid, or solid is dispersed homogeneously in a gas, liquid, or solid without chemical change.
  2. such a substance, as dissolved sugar or salt in solution.

So, for example, salt water is a solution. In this metaphor, the “solution” to our problems is the substance in which we can dissolve as many of our problems as possible, while precipitating out as few as possible. I want to dissolve my depression, my anxiety, my sensory problems, etc. Some of this is accomplished with medication, some with certain boundaries on what I do and how I do them, some with care of what I eat, and so on and so forth.

With the metaphor, it is presumed that these problems don’t actually go away. They are simply currently dissolved. It means that if something changes (and anything can cause a change), they might precipitate out of the solution, requiring us to tweak it. It does not mean we’ve done something wrong, it does not mean we lost, it does not mean we have to fight another battle. It’s just something that happens and that’s ok. We simply continue the process of finding the best solution at the time – and the best solution will definitely change over time. That’s life. It’s no big deal.

I like this metaphor much better. I may have enemies to fight, but they will not be my own body.

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I will never really trust the psychiatric community

So I have mixed feelings on the psychiatric community in general. Therapists, psychiatrists, psychologists, counselors, the lot. I mean, they can do a lot of good. I have managed to have good experiences in therapy, and I the meds I am taking are helping me a lot. I strongly believe that mental health does count as health, and that psychiatric problems count as medical problems.

But I do think there are some problems. And I don’t just mean “need a find a therapist who’s the right fit” kind of problem. For instance, there’s the racism problem that I talked about before. Not necessarily overt racism (though I’m sure there’s at least some of that too), but more the subtle, insidious sort of racism that people who try to be decent can still fall prey to. The kind of racism that leaves us with inexplicable differences in autism across races, later ages for non-white children to get diagnosed, and very few people talking about it or even acknowledging the problem.

However, that is not the problem I am here to talk about. I am here to talk about the suicidal problem.

I think I’ll just say it outright – I will never, ever, tell a therapist or psychologist or any sort of psychiatric person if I’m suicidal. NEVER. I think the way they handle it is atrocious, and ultimately causes more harm than good. If nothing else, their methods cause ME more harm than good, and their ham-handed approach does not tend to allow for any sort of nuance or personalization of treatment.

I’ve been an inpatient in a psychiatric hospital (or “mental ward’ as my dad likes to put it) on three occasions. I’ve seen callous, uncaring nurses, overworked doctors and nurses alike, reduction in the patient’s humanity, even in the “better” places. I’ve heard that they do help some people and that’s great, but they have never, ever helped me. If I should ever need help because I am suicidal, a hospital is NOT the right answer. It isn’t even close to the right answer.

Yet it’s the only answer that the psychiatric community at large seems willing to give. There’s just nothing else. I once was watching a discussion about this online and saw a therapist defend this position. The line of logic was roughly “if they are admitting to being suicidal than they obviously want help, so we hospitalize them.” This blatant display of “hospital = the only answer” really disturbed me.

Now, I’ve already talked about what I think are healthy ways to talk to a suicidal person. If absolutely nothing else, they would help me and I doubt I’m alone. Ultimately, though, hospitals “help” by reducing privacy, reducing choice, reducing independence, and a high degree of intrusiveness. It’s true, it’s likely to keep patients alive. But for me, that’s about all it’ll do. Instead of addressing underlying issues, the treatment that is supposed to keep me “safe” would only exacerbate the problem. My depressions are often triggered by feelings of helplessness and dependency and lack of choice. Taking all those things and shoving them in my face is harsh and cruel and will only serve to make my feelings worse. Yet do therapists think about that, about who I am and how I would respond and what I might need, if they were to hear that I am struggling with suicidal urges?

Nope.

Until that changes, I simply will not share any suicidal thoughts I may have. It isn’t actually difficult for me – I almost never share when I’m feeling that way anyway. Not even with those I am very close to, so keeping it from a group I consider to be high-risk is not in the least bit difficult. Also, it really doesn’t say anything good that I categorize people who are supposed to be there to help as “high risk.” In fact, it would take an extreme degree of trust and confidence for me to share thoughts and feelings like those, no matter how much I might want to ask for help. That’s just the way it’s going to be.

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