Category Archives: issue

How functional am I?

I’m told I’m high functioning.

As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.

Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”

But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.

A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.

Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.

This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.

Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.

I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.

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Filed under ability, issue, personal, Uncategorized

The Dunning-Kruger Effect

So I do a lot of thinking about my social skills. I think about where they are now, I think about where they were in the past, I think about what I want to learn and where I hope I’ll be in the future.

One thing I notice when I look back is that I seem to have been subject to the Dunning-Kruger effect rather a lot.

So before I go further, let’s talk a little bit about what that actually is. Basically, it’s a form of cognitive bias where a person is both really terrible at something, while simultaneously being unaware of how terrible they are at that thing, even to the point of thinking they are good at it.

Apparently there are four main points in play here. Basically, someone who is really incompetent at something will often:

  1. fail to recognize their own lack of skill
  2. fail to recognize genuine skill in others
  3. fail to recognize the extremity of their inadequacy
  4. recognize and acknowledge their own lack of skill, IF they have been exposed to training for that skill

And… yep. That’s me in a nutshell, at least when it comes to social skills. In the past, I honestly had no idea I was so clueless in my ability to socialize, related to others, make conversation, etc. I even, at times, thought I was good at it (I wasn’t. oh gods, I really really wasn’t). I am increasingly finding that the more I learn, the more aware I become of being so utterly clueless, at least of anything beyond the basics.

I am sufficiently clueless that I don’t even know what good social skills actually look like. I mean, I can see some people are obviously socially successful, but I don’t know how to learn from their example or apply whatever they are doing to my own life. I cannot differentiate between good advice and bad advice. Socially speaking, I am extremely vulnerable and I always have been, just because of how much I don’t know. Sometimes I worry about being taken advantage of, because as soon as I am criticized in a social arena I will back off and apologize, no matter what. Because often, I did fuck up somehow and I just don’t know how. But it means that there could be times where I don’t fuck up, where someone else fucked up, and they can blame me anyways because I don’t know the difference. This is something that worries me, because I cannot make myself any less vulnerable than I am.

That it is so possible, so probable, so be so clueless of my own lack of skill really does worry me. So now I try to offset this effect by being as aware as possible of my own incompetence. It’s a lot easier to learn when I know I have a lot to learn and can remain open to said learning.

I’m honestly hoping at least a few of you will be able to relate to all this. And if you can’t, remember that this Dunning-Kruger effect is actually a thing. Which is to say, try to be patient with me, and maybe with others who are like me. I am trying, but it’s super hard.

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Can we please have a conversation on this?

Ok, this is getting written just minutes before I am posting it, so this will probably be pretty rough. Let’s see how this goes.

I follow a woman named Caitlyn Doughty on youtube and on her blog. She is a mortician who talks about death, and grief, and burial practices, etc. She wants people to become more connected to death and grief and such, and is generally not in favor of how our current society generally tries to avoid such things. This is a really rough explanation, but I hope I’m getting the idea across. I really like her youtube series Ask A Mortician and generally support her ideals.

Now, there’s one thing in particular I want to focus on here. On her blog, she is talking about an “End of Life Option Act” currently in debate in California. She is strongly in favor of it, believing that people who are terminally ill should have the option to request medication to peacefully end their lives. Honestly, I can see her point. I would even go so far as to say I support the idea.

Only there’s another side to this. A disability side. A side where doctors (and others) will take it upon themselves to decide whether or not a severely disabled person’s life is worth living. This is a very dangerous and Not OK thing (and there are links out there about it; I’m sorry I don’t have any on hand right now). So in disability communities, often people are absolutely against Death With Dignity legislation, because of how it could easily be abused.

What I think needs to happen is for these two groups to have a conversation. Those who are in favor of things like the End of Life Option Act need to sit down and listen to the concerns of disabled individuals and find ways to address them. The concerns of the disability community are serious and entirely valid, and deserve to be heard.

Which is why, way back in February, I decided to give it a try. I went ahead and emailed Caitlyn via the email address given for Ask A Mortician on her website. This is what I emailed:

Hello. I am a big fan of your work, your book, your youtube channel, and your message of death positivity in general.
You recently posted a link to your facebook page talking about a landmark decision in Canada to allow two women to “die with dignity.” I support such legislation and am a big believer in people being able to take charge of their own deaths.
However, I also run in some circles that are strongly against such legislation. As such, I have a serious question for you. I know you cannot answer individual mail anymore, but I hope it is at least something you are keeping in mind as you do your work.
I am autistic, and am at least somewhat aware of disability issues. One of those issues is the extremely serious problem of doctors believing that disabled lives are not worth living, and doing things like pushing disabled people to not undergo life-saving treatment, or deliberately giving needed treatment so slowly that it does not do any good. One of the responses to this problem is to be against “death with dignity” legislation, under the idea that there is absolutely no way to enact this without leaving it open for abuse by doctors and caregivers of the severely disabled.
I like to believe that there is a way to cover both of these issues. So what I want to know is – as a proponent of death with dignity and such, how are you taking into account the other side of the coin, with the current and horrific problem of people in positions of power already concluding that disabled lives are not worth living, despite the fact that many of those disabled people feel very much so that their lives ARE worth living? What do you think is the best way to prevent abuse of “death with dignity” laws or rulings in the future?
Thank you
Andraya
Now, I knew getting a reply was unlikely. I’m sure she’s very busy with her projects and what’s going on in her life. However, I still found myself hoping that she would see this as a significant enough issue to address. That there would be some acknowledgement from her on how important it is to never decide for someone else whether or not their life is worth living. But, I suppose unsurprisingly, there has been nothing at all. And now she’s seeking support for this End of Life Option Act in California, and all I feel is sadness that the death with dignity people won’t bother to have a conversation with us.
As it is, I don’t think I can fully support death with dignity anymore. At least not until we can have this conversation that we really need to have, addressing the very real concerns regarding possible abuse by doctors. Being heard is important, and it hurts when it seems the concerns of disability activists are seen as irrelevant.
UPDATE: Not long after putting this post up, Order of the Good Death contacted me by email! It was mostly informational, adding some details that weren’t in the blog post about safeguards and such that exist to hopefully prevent abuse. Apparently that is also why they want to send it through the legislature rather than have it go by a ballot – those safeguards would probably be dropped if it went to a ballot measure. So these are the points that Order of the Good Death made regarding safeguards:
  • It allows only qualified, terminally ill and mentally competent adults to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death.  Two physicians must confirm the prognosis is terminal.
  • It requires two witnesses to attest that the request is voluntary.
  • It protects physicians from civil or criminal liability, and from professional disciplinary action, if they fulfill an eligible  individual’s request. Participation by doctors is fully voluntary.
  • It provides safeguards against any coercion of patients: It establishes felony penalties for coercing or forging a request; and it honors a patient’s right to rescind the request.

That the medication is to be self-administered is, I think, the point that I find the most important. I do not believe even these measures completely prevent possible abuse, but it does drastically reduce it.

Plus, I am both surprised and pleased that I was contacted at all. That’s pretty cool.

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Filed under death, issue

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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Museum day

So this sunday I went to the Franklin Institute. I greatly enjoy museums, and a friend of mine had found a leaflet from the museum proclaiming “Sensory-Friendly Sundays.”

The description on the front says, “The Franklin Institute is proud to welcome families, adults, and groups with members on the autism spectrum to Sensory-Friendly Sunday, a day to enjoy the museum in your own way and in your own time. All are welcome!”

I’ll repeat on bit here: “a day to enjoy the museum.”

It only occurs one Sunday every two months, which I thought was kind of dismal, but I was also heartened that they were having sensory-friendly days at all, and I wanted to try it. So on one of the days listed, we went.

Well, we got there in the early afternoon and started poking around. We didn’t see much different about it but weren’t too concerned about that as it was being an enjoyable time. There were various enjoyable things to look at and interact with and it was going fairly well.

Until we got to the electricity section. Then it all went horribly, horribly wrong. It turns out that on the ceiling in the middle of the electricity exhibit there is a fairly large tesla coil. A tesla coil that goes off incredibly loudly, with no warning whatsoever.

We were there in the room, looking at an exhibit, when an incredibly loud, deeply painful ROAR occurred. Nothing was going wrong or was broken (as I first thought must have been happening). Nope, apparently that is just part of the exhibit. No signs warning us of it (at least that I saw), no announcement or notice ahead of time, just a sudden, horrible noise.

Honestly, that pretty much took everything out of me. Once I could feel my limbs again I left the room. And I tried to keep doing the museum, I really did. I didn’t want that to destroy the day. But honestly, I just couldn’t. It had taken too much out of me. It had been too painful. It was not long after that I realized I really had to leave.

Which, of course, brought up the question – what happened to this sensory-friendly day the museum was supposed to be having? A loud, painful noise given without any warning whatsoever, so that no one in the vicinity has a choice whether to be subjected to it or not, is extremely far from sensory-friendly. I would call it downright sensory UNfriendly. Maybe a sensory onslaught.

Before we left we went back into the ticketing area and looked for another copy of the leaflet to look at. A task which proved somewhat difficult, but we eventually found one. Turned out carefully looking over it and reading all the details on the back gave some critical extra information. “Specially adapted exhibits throughout the museum from 8:00 am-12:30pm” (emphasis mine). Now, I will grant you that it is my own fault for not reading the fine print. However, I do not think it’s my own fault for thinking that “day” (as mentioned in their description) actually means “day” rather than simply “morning.” But apparently when they say “day” they mean “morning” and personally, I think I’m justified in being unhappy at their word choice. I find it disingenuous.

Even for an autistic adult there is aftermath to such an event (and if it had happened when I was a child, I can only imagine the meltdown that likely would have resulted). Somehow my friend and I made it back to their apartment despite the fact that I was shutting down and finding it increasingly difficult to walk. I wound up collapsed on my friend’s bed, wearing their noise-cancelling headphones, for I don’t even know how long as I slowly, gradually, came out of my shutdown and became able to deal with the general noise and chaos of the world again.

I also want to mention what my friend was pointing out – while that noise was particularly bad for anyone with sensory difficulties, even neurotypicals would find it bad. As they put it, “It’s just really fucking loud and completely without warning. Most people don’t go to the museum to have the crap scared out of them.”

I am extremely unhappy with the Franklin Institute and think what they did, what they are doing, in the electricity exhibit is wrong on multiple levels. Is it really so impossible for those already rare sensory friendly days to actually be, you know, a whole DAY? Is there no reason they cannot give warning when they are about to assault their guests’ senses so we can opt out if we choose?

This was not ok.

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An Experimental Sponge Bath

Quite a while ago I wrote and posted How Do I Adult: Showering. Some people responded with comments about difficulty in the actual sensation of water hitting them through the shower head. There can be possible solutions to this just by changing the way the water flows through the shower head, but recently I thought it might be worth looking into how sponge baths work.

There seems to be a general assumption out there that sponge baths are either for people who are bedridden or for people who do not have running water, and all of the instructions I could find out there are specifically directed for those groups. I took the information and modified it a bit, since I can move around and do have running water, and did an experiment. Here’s how it went!

The initial set-up wound up being more about what worked best in my bathroom rather than about any limitations my body had. I took a large aluminum mixing bowl, plopped a spoonful of baking soda in it, filled it with hot water, and placed it in the bathroom sink. I put a towel on the floor to stand on in order to catch most of my drips. Then I grabbed a washcloth, dunked it in the bowl to get it wet, and got to scrubbing.

Basically, I would get the washcloth wet, scrub a part of my body, and then re-dunk the wash cloth. This actually was a very quick process and only took a few minutes to scrub my whole body. After that I put the washcloth aside and leaned forward to dunk my head in the water in order to wash my hair. I got my hair nice and wet and combed it to get the baking soda through it.

Next up I dumped the used water down the shower drain and set the bowl aside. I got the water running in the sink again and stuck my head under it to rinse my hair. I also decided that I wanted to soap up the parts of my body that are most prone to being sweaty or smelly – namely, my armpits and my genitals. So I grabbed some soap and quickly soaped up those spots. Then I used my wet washcloth to wipe the soap bath off, wiping and rinsing the washcloth in running water in the sink.

I have read that it is not necessary to rinse after a baking soda bath, but I decided to rinse myself anyway. Keeping the water running in the sink I rinsed out the washcloth I had used, and then lightly rubbed myself down with it much the same way I did to wash myself. I got it nice and wet with the water, wiped down a part of my body, and repeated until I was done.

Now all the was left was final clean up! I dried off with a towel the same way I would after a regular shower. I used the towel on the floor to wipe up any water splatter on the floor, and I rinsed out the bowl I had used for the baking soda bath. Finally, I hung up the towels used and put everything away.

Alternatives

I did things the way that I did mostly because my tub/shower gets cranky when the water is switched from the shower head to the faucet. Another way to do this would be to get into your tub like usual and sit down – either right in the tub or on a shower stool. You could also skip the baking soda entirely and just scrub with water, though you’d probably still want to use soap on armpits and genitals. Yet another option would be to go ahead and soap up entirely. Since you would still have access to running water, you could use a cup to catch water from the faucet and pour it over yourself to rinse. Hopefully that would still allow for a thorough cleaning while avoiding potential sensory difficulties from the shower head.

I imagine there are any number of variations that are possible that I haven’t thought of at all, that could accommodate different people’s needs or bathroom arrangements.

Final Thoughts

Overall I am happy with this experiment. Both my skin and hair feel lovely and soft, and I still felt refreshed and clean once I was done. I am not always very good at showering quickly and especially have difficulty getting water a temperature that I am happy stepping into. This was much faster and water temperature had a lot more flexibility to it since I did not have to stick my whole body into it. Also, it is currently hot and sticky out, and my bathroom is not temperature controlled. Being able to just stand there wet, without anything hot (or even warm) beating against me was quite nice.

The bad part: I still got itchy! So itchy! There are a number of possible explanations I can see for this:

  1. I am prone to itchiness when it is hot and sticky anyway, particularly after a shower. It’s possible that my itchies were just typical post-bathing, hot-weather itches.
  2. I used a harsher washcloth than I usually do. In retrospect, I’m not sure why I did that. Probably something to do with thinking I should “scrub.” That probably made my skin unhappy. In the future, I will stick with my nice, soft, friendly washcloths.
  3. It’s possible I should have rinsed the baking soda better than I did. I am least convinced of those one as the part I rinsed the least (my back) is also a part that is not itchy. However, I may see if I can get my recalcitrant plumbing to cooperate with me and attempt another sponge bath experiment in my tub, so I can rinse with a cup instead of a washcloth.

I currently intend to continue my experiments given how well I think this one went. If it continues to go well, I may even write up a How Do I Adult post about it all. As it is, I do believe it is an experiment I can recommend to other people as worthwhile if showers are difficult for whatever reason.

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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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Filed under issue, that's not helping

Trust

Image is of a “trust fall,” an exercize where a person falls backwards with someone (or several people) behind them, trusting that said person(s) will catch them. Once was doing a trust fall thing with someone, and they dropped me.

I don’t think I’ve talked about trust much before on this blog and to be honest, I’m not sure why. I do a lot of thinking about trust, largely because my relationship with trust is more than a little bit dysfunctional. I’ve often wondered why that is, and it seems the Aspergers might just play a significant role.

Trust is such a weird, tricky thing to me. What does it mean to trust someone, or not trust someone? I often feel most comfortable in the in-between space, where I neither trust nor distrust. Everything just is, without expectation. However, while that sure sounds lovely and makes for a nice little sound-bite, it does not necessarily translate very well in reality. Expectations come with knowing someone well or for long enough, and it’s a normal part of interaction. So while I tried to just fling the concept of trust away from me for several years there, it did not work very well.

Nee actually has a definition of trust that I find pretty nifty. Basically, trust is, to him, about predictability. Trust is knowing reasonably well how a person will act in a given situation. In this case, trust is not always positive. Sometimes, I can trust that a person will let me down, or trust that someone cannot keep a secret. This influences my behavior and what I choose to share and how I choose to interact with them.

I still feel weird about the word, though. I think it’s one of those nebulous concepts that I have so much trouble with. I can’t nail it down, so I feel like I’m trying to wrap a net around fog when I try to get a solid handle on what it is.

Another important point about trust (wow, I’m jumping all around here) is that even for a single individual, trust is non-transferable. Maybe I can trust that someone will keep something private, but not trust that they will be kind to me in a conversation. People are strange and unreliable creatures, and a person might be super reliable in one sense and not at all reliable in another. Or, even worse, they might be totally reliable one day and not at all reliable another.

Navigating all this complexity is very difficult for me. I wish people were more consistent, but they just aren’t. I suspect my own inability to keep up and to accurately assess people’s moods at a glance really has an impact on my willingness and ability to trust people.

Nonetheless, I have found that I still have the ability to feel betrayed by an action. It stands to reason that if I feel a sense of betrayal due to someone someone did, I must have first had a sense of trust that they would not do that thing, right? So it’s tempting to attempt to go back to no expectations – only there is a point where lack of trust and distrust become very similar, and people, in my experience, do not care to be distrusted. It is insulting.

I also think that in my case, my autism makes me more vulnerable. I have an unfortunate tendency to believe people, which can very easily lead to my getting hurt. I also seem to view socialization in a simplified way, causing me to miss nuance that might be obvious or important to someone else. (of course, this goes with my usual rant that this is, of course my fault, and if other people miss nuance that is obvious or important to me, that is somehow also my fault. I think differently, but that doesn’t make me less)

I don’t actually have any answers here, only perspective. The perspective of someone who is frequently confused by this “trust” thing, all too frequently hurt, and who has little idea of what to do with it all.

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Being Like Me

Image is of a polio ward full of iron lungs, 1953

I am autistic. On the autism spectrum. An apie. Has Asperger’s. Pick your wordage.

There is an ongoing debate that Will. Not. Die. regarding whether or not vaccines cause autism. The usual response to the anti-vaxxers is that there is no evidence that this is the case, and studies indicating that vaccines do not, in fact, case autism. There there was that video by Penn & Teller showing probabilities in a very visual way, basically saying that the risks associated with not vaccinating are far higher than the risk of vaccinating, even IF vaccines do cause autism.

Thing is, both of these responses are ignoring one key piece. A piece that is, from my perspective, absolutely and completely vital. It is taking the argument on the anti-vaxxers terms, not questioning their implicit assumptions, and that is dangerous. We MUST call out implicit assumptions, and challenge them if necessary.

The implicit assumption here, rarely stated explicitly but present in every “vaccines cause autism!” argument is that it is better to die from a preventable illness than it is to be autistic.

It is better to be dead than to be like me, according to these people.

And you know what? There have been times where I actually believed that. I thought that yeah, being dead would be better. And that is so, so dangerous. Is that the implicit message we want to send to autistic people, of any age? Because when we fail to challenge that implicit belief, that understatement that is so easy to overlook in favor of arguing whether or not vaccines really do cause autism, that is the message we are sending. That yeah, it’s better to be dead that to be autistic, we just need to know whether or not vaccines are involved here.

If it were proved that yeah, vaccines cause autism, would that make refusing to vaccinate ok? Because when we exclusive focus our argument on that, to the exclusion of “it’s ok to be me” which yes, is totally an important part of this discussion, we are still saying that death is preferable to autism.

Let’s not send that message to ourselves, our children, our community, or ANYONE. Being like me is most definitely not worse than being dead. If I had a choice between being autistic, and being neurotypical but unprotected against measles, mumps, rubella, hepatitis B, polio, diphtheria, tetanus, pertussis (whooping cough), HiB disease, and chickenpox, I would pick autistic any day.

Being like me is challenging and frustrating and sometimes painful, and it is also wonderful and interesting and ok.

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Filed under death, issue

Recognizing Faces

Retrospective

I’m pondering recognizing faces today. Or rather, not recognizing faces.

See, I’m not so good at recognizing people by their face’s. It’s a fairly common thing in Asperger’s. It actually has a name – prosopagnosia, and I have it, if only relatively mildly. I mean, I can recognize some faces, some of the time, but really not consistently and often cannot tell people apart even if everyone else thinks those people look totally different. Case in point – remember those Lord of the Ring movies? And two of the characters were Aragorn and Boromir? I had to watch the entire trilogy through three times before I could even begin to tell them apart, and even now it’s tricky. To me, one brown-hair-and-a-goatee looks like any other brown-hair-and-a-goatee. High school was rough, let me tell you.

This actually popped to mind because I was pondering my cat. Tarball knows me quite well at this point. Probably mostly by scent, but my face seems to have some meaning for him as well. While I stop recognizing someone if they change their hair in some significant way, Tarball seems to have no trouble. I cut off all my hair a while back, and he never even blinked. I find myself wondering – does he notice at all? Does he recognize my face? If so, what about my face is it that he notices? Or is it more my scent, my posture, my voice (those being the things I myself can more consistently recognize people by)?

Then I got to wondering if he does have some form of facial recognition, what does it go by. What does he look at? When I look at faces, I never see a whole face. At least, not in the way I’ve heard it described. I see pieces. Chin, nose, cheeks, forehead, hair. I actually cannot recall whole face in my memory or visualize a face in my mind. Only pieces. I suspect I miss a lot of nuance in faces.

Sometimes I wonder what it must be like to just see a whole face. Apparently for NTs, that’s now it works – whole faces. Not pieces and parts seen a bit at a time, but just… an entire face. I feel like I am not describing this particularly well, but I doubt I can do any better given how foreign it is to me.

I’m not sure why, but it is a bit easier for me when I’m looking at a photograph of a person, rather than the person themself. Though that gets into the trickiness that pictures of the same person photographed from different angles or with different facial expressions will look like entirely different people to me. That’s a little weird.

A face only becomes even vaguely unified once I get to know a person, or at least once I see them enough for their features to become distinctly *them* rather than just a collection of features that could be anyone. I still don’t see whole faces exactly, but I can recognize them against other people with similar features, and their pictures all look like them.

This is another post without much point. I just felt like exploring the concept, since my cat seems to have no troubles here and it popped to mind. Faces are just such strange, tricky things. It’s hard to know what to make of them.

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