Category Archives: request

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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Filed under ability, opinion, request

Franklin Institute Follow Up

A while back I wrote about an attempt to enjoy a sensory friendly day at the Franklin Institute, and how it turned out Very Badly. To sum it up, since it was over a month ago now, I went to what was billed a “sensory friendly Sunday” at the Franklin Institute. However, it turned out that “sensory friendly day” actually means “sensory friendly morning,” but this information is not necessarily readily available. It isn’t even listed on their website’s page about the event. When I had gone into the electronics exhibit, a large tesla coil went off and, well, that was that. It was painful and horrible and completely without warning.

However, a while after I wrote that post, I actually heard from the Assistant Director of Museum Programs from the Franklin Institute! I wrote back asking permission to share her email in my blog but never did hear back, so I guess I’ll just try to sum it up. Her email covered three basic points.

  1. I had complained in my post that there was only one sensory friendly day every two months, which is not much. She pointed out that there is a lot of demand and competition for different programs and events, and they are happy that they can offer as much as they can. And… point taken. Not exactly delightful to hear (it can sound a bit like “take what you can get and be grateful!”) but honestly, that is sorta where I am at the moment anyway. And it IS nice that they are making an effort – not everyone out there is.
  2. She agreed that the electricity exhibit is a problem. “It is an extremely sensory-unfriendly experience, and based on your feedback, we can begin a conversation internally of how to better inform guests of what they will experience.” That’s pretty awesome, and I hope eventually they are able to make improvements. Heck, I’d be happy to contribute to that conversation, assuming I’d even have anything to add or would be welcome.
  3. The next sensory friendly day (morning) is September 13th, which is only two weekends away. She expressed a hope that I would try again, and if so, email her so she could meet me in person!

That last point is the one that I am most bouncy about. Meet an official museum person? To maybe talk about museum stuff? And sensory stuff? just… wow! I haven’t solidly decided to do so yet, but I think I should. Going on my own is still really hard, but if I can find someone to haul along with me, I think I would really like to try.

I’m writing this for two reasons.

  1. This is pretty cool, and I wanted to share. Yay for hearing from a museum person!
  2. I want your thoughts. What do you think of the points raised? Do you think I should try to meet her? If I do, what sorts of things would you like me to remember or keep in mind or mention?

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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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Filed under issue, personal, request

I could use your help

I posted this on facebook, but only a few of my facebook fans actually see any of my posts, so I’m putting this here too.

I could use your help!

I want to put together a post (which might become a page, if it works well) of various language codes used by general society. Some examples would be the “high, how are you?” ritual, which actually means “Hi, I acknowledge you as a person!” Or one I’ve only learned fairly recently: “I want to get to know you” is code for “I want to get into your pants/date you/etc.” I am from the US, so I don’t know if these are codes in other parts of the world.

Would you tell me any codes that you know, along with their translation, and the region of the world that it’s used in?

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