Autistic Memory

Today I am thinking about memory. There seems to be a growing body of research into difficulties (or at least differences) with autobiographical memory in autistic people, especially when it comes to episodic autobiographical memories, which are recollections of specific events in your own life. (This is in contrast with semantic memories, which have to do with remembering knowledge about the past, like your old phone number or high school locker combination.)

I’m not familiar with every aspect of this research, but I’ve come across several references to it lately and it got me thinking. I do feel that I have less-detailed autobiographical memories than many people I know, but I wonder whether this is due more to actual differences in memory mechanisms, or if it is a matter of attention and emphasis.

I remember getting back together with a high school friend after we had both graduated from college, at least five years after high school. She could rattle off all sorts of events that had happened to both of us going back to when we met in third grade—class field trips, school assemblies, things individual classmates or teachers had said and done. She remembered people’s names from way back, too.

Me? I barely remembered anything she mentioned. High school (and everything before it) was blessedly behind me, so why would I remember it? None of the incidents or names my friend brought up had any relevance to my life anymore, so I rarely thought about them. A lot of things did come back when she brought them up, and most of the rest at least rang a bell, but even that didn’t jog much else loose from my own memories.

Similarly, I will forget about things that I have done that were really important to me at the time, even things I did for years. Oh, right, I sang in a community choir for three years. Oh, yeah, I spent a year attending a study group learning Scottish Gaelic. Sometimes these things will just pop into my head, as when I recently remembered the months I spent playing volleyball on two different teams in an adult recreational league in my mid-twenties. And when I hear someone else recount an experience that triggers a similar memory, I can bring it back up, as when I worked with another Air Force veteran for a while and we regularly swapped training stories. (But I will tell you, if you ask me an open-ended question about anything, including my past, my mind will reliably go blank and not serve up any answers at all, even if they’re in there.)

So the fact that they do sometimes pop into my head indicates that the memories are there, they were formed, they’re just not at the front of my mind. And that’s why I think the issue isn’t so much that I have a deficit when it comes to autobiographical memory—I just don’t feel the need to dwell on my own past. Compared to all of the other things I could be thinking about, my past history isn’t all that interesting to me; I’ve been there, done that, you know?

(As an aside, this does lead to funny conversations at times, when I bring up something I used to do because it came back to mind during a relevant conversation, and the person I’m talking to is stunned that they never knew I did that. It just…hadn’t come up before. I mean, I’ll acknowledge that I’ve done a lot of interesting things, I’m just not interested in listing them off for people.)

I guess there is an assumption that just because I was there, it should be important to me. But memories of people and social events are not privileged in my mind; they get pruned like anything else. People forget all sorts of things when they don’t need to remember them—a fact I have been painfully reminded of as I work through a math review for the GRE—and autobiographical memories are no different.

Think of it this way: given how intense autistic interests can be, and how often we can end up coming to know (and remember) all sorts of fascinating facts and info about our passions, isn’t it possible that we just don’t want to devote a whole lot of mental energy to storing and recalling information about people and events that aren’t in our lives anymore? That’s how it feels to me. I’ve got better things to think about than who my fourth-grade homeroom teacher was.

(P.S.: I think there is a lot more to be said about memory in autistic people, and there is definitely a lot of variation in how much or how well people remember. It even varies wildly for me, because I will sometimes get a very vivid flashback of something I thought I’d forgotten. So all of the above should be taken as one person’s random musings on the subject, which may or may not be generalizable.)

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Irons in the Fire

I have a lot of irons in the fire right now. I’m technically on summer vacation from school, but work has been busy, and I am trying to use the summer to get ready to take the GRE and finish up the research project that will be part of my application to grad school. Plus, I am trying to expand the offerings in my Etsy shop (just added new things last week!) and my husband and I are exploring a new business venture that he’s been thinking about for a while. I also want to get back into a regular schedule of posting on this blog, possibly even increasing the frequency of posts. It’s kind of a lot to manage.

(I’ve always liked that expression, by the way: irons in the fire. It feels solid and businesslike, in a hands-on, creative kind of way. It’s a lot more appealing than saying I have a lot of balls in the air, because while I do kind of like the juggling metaphor, I’ve never been very good at juggling, so it makes me feel like all of those balls could come crashing down around me at any minute. No, better to frame them as irons in the fire, as if I were a blacksmith forging pieces of my life.)

Long-term projects are particularly hard to keep up with at times. I start out with the intention to work on something a little bit each day (with wiggle room for off days) but when there are multiple such projects, it gets to be unwieldy. Not only is there often not enough time available once outside commitments are met, but some projects require more sustained attention than “just doing a little each day” will allow. So one thing I started trying this past week was designating a different project for each day of the week; my responsibilities on that day are then to take care of any paid work I am scheduled to do (and any other appointments and such), and then spend at least a couple of hours on that project. It’s like an additional work schedule, but one that I am fulfilling for my own work.

So far I like it. I made a lot of progress on three different projects this week, and being able to really get into a hyper-focused groove with them was highly satisfying. I left one day (Sunday) as a “miscellaneous” day, where I could work on anything that called out to me, catch up on things that hadn’t gotten done due to unforeseen schedule changes, or just take a day off and relax. I ended up doing all of the above today, which left the day feeling very productive but also nicely paced; I didn’t feel rushed to get particular things done, I just did them.

It helps that I really enjoy working on these projects, so spending most of the weekend being productive in this way doesn’t leave me feeling like I never get a break. Researching, writing, crafting, and reading are all things I look forward to doing, so having a whole weekend to pursue them does feel like a break. But I suppose I’ll have to see how it goes in the long run.

On the practical side, I drew up a weekly schedule on my home office whiteboard, and added recurring reminders to my to-do list for which project to focus on for each of the days. That way the schedule is constantly visible to me when I am in my office, and I get a reminder each morning when I look at my list of tasks. Both of these things are really helpful as executive function supports, as well as general memory aids; I’ve been using Todoist to manage my project to-do lists, and I’ve really come to appreciate the benefit of having some things be more visible by using a whiteboard. My husband and I have a household whiteboard on the wall at the bottom of the stairs, where we see it all the time. This has really helped keep both of us on track with things that need to be done, especially one-off or time-sensitive tasks that could easily fall through the cracks.

My main concern with this plan is that there are some days when I am just not in the right frame of mind to work on a particular project; if I didn’t sleep well, for example, writing can become hugely difficult. So designating a set day of the week for each project may not always pan out. But if I can remember to be flexible and just swap days with something I can work on, I still think it will be manageable. That already happened this weekend, actually, and I just made use of my “miscellaneous” Sunday to catch up.

So I’ll see how it goes! Just have to keep forging, one iron at a time.

Autism, Sex, and Gender

Over the last couple of days, I watched all of the available recordings from a conference titled “Intimate Lives? Autism, Sex/uality, Gender and Identity.” It was organized by four doctoral students–Marianthi Kourti, David Jackson-Perry, Kirsty Allenby, and Daniel Bendelman–and funded by the British Sociological Association. It took place on May 18 at the University of Birmingham in the UK. Overall I thought the presentations were excellent, and while I’m not going to write up a play-by-play of each one, I wanted to share some of the content that particularly resonated with me.

Preliminary note: I have tried to use the proper preferred pronouns for each speaker, but if I have gotten any of them wrong, I sincerely apologize. Please let me know so I can update the post. In addition, if I have mischaracterized anyone’s statements or opinions, please let me know as well. I have done my best to accurate represent what was said, but misunderstandings happen, and I don’t want to attribute anything to anyone that they didn’t mean.

In “Walking through Treacle: The lived experiences of autistic students in FE and HE,” Deborah Philip talked about research she has been doing into the experiences of autistic students. This wasn’t specifically focused on gender and sexuality, but it was very interesting to hear how her research has changed directions because of her interactions with autistic people. She had initially been interviewing autistic people, parents, teachers, and other professionals, but then she noticed that the autistic students themselves were telling her quite different stories than their parents and teachers were. So she changed her plans and began using only input from autistic people themselves, and focusing on the issues that came up as being important to them.

Deborah brought up the idea of “learned helplessness” to suggest a reason why the students often pretended to agree with what their parents were saying, but then told her otherwise afterwards. (Learned helplessness is a psychological phenomenon that occurs when an individual is repeatedly subjected to painful conditions that they cannot escape. Later, when escape is possible, it is still not attempted because the individual has previously learned that they are helpless, so they don’t even try.) I thought this was a particularly poignant way of describing the experiences of people who are constantly talked over, their own experiences and viewpoints subordinated to other people’s.

One more thing I want to say about this presentation was what Deborah said about person-first language. (If you regularly read this blog, you’ll already know that I’m not a fan.) She said that while professionals tend to insist on person-first language, the autistic people she worked with preferred identity-first language. At one point she also invoked the phrase “living with autism” by saying, “I guess a society that wants to ‘live with’ something, would like to live without it.” I thought that was very powerful as well.

In the second panel, Lexi Orchard presented “Winning at Sexuality: A personal reflection of passing in a hypersexualised world.” They started with an overview of some of the ways in which autistic people attempt to pass as non-autistic, including suppressing our natural behavior, impersonating more typical behavior, and scripting. They also had their own term for another technique, which I found incredibly relatable: they called it “precog.” This involves attempting to foresee all of the possible directions a social encounter might go, following all of the potential branches and preparing scripted routines for each of them. This was so familiar to me, and I love the term “precog” (short for precognition, I presume) to describe it. I actually think this strategy really needs to be talked about more, because it is one of the things that makes social interaction so draining and exhausting for me.

Lexi also talked about how masking, scripting, and other techniques are done out of self-defense. They are survival skills that (hopefully) allow us to avoid painful encounters and also get access to social resources. But there are heavy consequences to passing, too: it takes a physical toll, and eventually makes it hard to even know yourself or your own preferences. At one point, Lexi said, “If somebody says, ‘What do you want?’, my brain suddenly goes into this passing mode where I attempt to figure out what you want me to want.” This, too, was painfully familiar.

As part of panel three, Jake Pyne presented “Narrating Autistic and Transgender: Implications for the Gender Clinic.” He talked about the ways in which autism and transgender identity are assumed to be non-overlapping, and the many barriers autistic people face if they want to transition. Jake also brought up the entwined history of applied behavior analysis (ABA) and so-called conversion therapy, which is aimed at gay, bi, and transgender people to “fix” them; Ole Ivar Lovaas and George Rekers worked together as they created these parallel behavior conditioning programs—one to eradicate autistic behavior, and one to eradicate gender-nonconformity. But while conversion therapy is starting to be banned in more and more areas, ABA is still considered best practice for autistic kids.

Olivia Astrid Pountney also talked about the barriers to transitioning that many autistic people face, in “Transitioning in a neurotypical world: A critical autistic analysis on gender identity services.” She talked about the typical narrative expected by gender clinics, and how it doesn’t always fit the trans autistic experience. For example, she talked about the ways in which people are expected to perform stereotypical gender roles in order to be accepted as being “really” their gender, but for autistic people those social norms are often nonsensical. They can also clash with sensory needs, which leads to the dilemma, for her, of choosing between wearing sensory-friendly clothing that isn’t stylish, or wearing more stylish clothing that conforms to gender expectations in order to be accepted as a woman (while being uncomfortable). She pointed out that there is no universal experience of being trans, autistic, or both, and emphasized the need to depathologize both trans and neurodivergent identities.

In “Spanking my sensory needs? An understanding of myself as a human, a sexual being and an Autistic,” Jennifer Layton talked about the ways in which BDSM practices allowed her to inadvertently meet her sensory needs before she learned she was autistic. After a late diagnosis, she was given various recommendations for her sensory diet, and she came to realize that they were things she had always enjoyed through BDSM. For example, she was given the recommendation to wear tight clothing and/or wear a weighted backpack for a feeling of pressure…which is precisely the experience of being tightly bound in rope and/or rubber. Similarly, a recommendation that she swing back and forth was mirrored by her enjoyment of suspension play. Because kink is so misunderstood and pathologized, she had felt ashamed of her enjoyment of it, but she is starting to overcome that, in part through this recognition that it has allowed her to meet her autistic sensory needs before she consciously knew she had them.

The last presentation I’ll talk about is Sonny Hallett’s “To Hug or not to Hug: physical affection at the intersection of autism, culture and gender.” There were several fascinating aspects to their talk, including the experience they shared of growing up partly in the UK and partly in China with their grandparents. The two cultures have very different expectations about physical contact (and eye contact), especially between strangers, and Sonny found their autistic traits more normalized in China. They found the social environment harder to navigate when they returned to the UK, including knowing when physical contact would be welcome.

The main dilemma that Sonny conveyed was that, while they felt starved for physical affection, it was also often uncomfortable, and they didn’t know how to seek it out when they wanted it. On top of that, they mentioned how Westerners tend to sexualize everything, starting at an early age. Casual touching, or giving someone a hug, is quickly seen as a sexual overture, so knowing how people will interpret things becomes important. For an autistic person who has trouble reading social cues, this becomes even more difficult, and Sonny said they eventually ended up taking a passive approach to physical affection. But simply allowing physical contact whenever it comes your way can quickly become dangerous, because you don’t learn how to set boundaries. They described what they called “anxiety confusion thought-cycle paralysis,” which is when you’re trying to read a situation that is getting uncomfortable, going around in circles about what’s going on, and then ending up deciding that you’re overthinking it and not saying anything. This, too, felt very familiar to me.

All in all, this was a great conference, and I don’t want to give the impression that the sessions I didn’t write about weren’t interesting—all of them were, and together they offered a wide variety of research, observations, and personal experiences that centered autistic experiences of gender and sexuality in a way that was very encouraging. I hope to see more events do the same.

Crunch Week, With Ducks

This last week felt like a marathon run at a sprinter’s pace. My work schedule became something of a crunch just as I was finishing up the last week of my school semester. But finish it I did, and all of my work, too; there just wasn’t much time for anything else.

I did go to Pride last weekend, which was my first time. And it was fun, but very…overwhelming. I felt like I was constantly immersed in waves of people, and the sound system for the staged events was ridiculously loud (and I was wearing earplugs). If I wanted to be close enough to be able to see the stage, I had to put up with a volume level that threatened to give me a headache. I don’t understand how anyone could stand it, to be honest—especially the people who were even closer. I’m still happy that I went, but it was hard to enjoy it as much as I wanted to.

So I started my week feeling already a bit fried. Then I had a number of “extras” sprinkled throughout my schedule for the week—one-off events, or monthly appointments—that filled in a lot of the time and also made me feel continually pulled from one thing to the next. That also tends to leave me feeling fried. So here I am at the end of the week, trying to remember what it is I wanted to write about, and deciding I’ll just write about feeling fried.

This weekend is a busy one, too, and Monday is looking like a bear, but at least after that my schedule “should” be easing up now that my classes are done. But there are so many things that I’ve been wanting to get back to, or wanting to make time for, and I keep saying, “Ok, over the summer I’ll…” I want to make sure I don’t let those things slide, but I also need to give myself time to decompress from this latest crunch time.

Luckily, our beautiful land is full of spring wildlife, and the pond in particular has been a source of relaxing visuals and lovely sounds. (Although around dusk, those sounds can really ramp up. If you haven’t heard it, you’d be amazed at how ear-splitting a pond full of frogs can be.) I can’t help but take moments throughout the day to pause and look out at all of it.

So, here: have some ducks. In the past couple of years, we’ve had wood ducks bringing up ducklings in our pond, but this year it’s the mallards who have been around the most. Hoping for ducklings either way, though!

Pair of mallard ducks standing at the edge of a pond

Culture and Community

I attended a conference last Friday put together by Autism Connections, an autism services provider based in western Massachusetts. The event was organized around two keynote speakers, Steve Silberman and Al Condeluci. I may write more about the conference itself later, but for now I just want to pull out two strands of the discussion that have been intertwining themselves in my head ever since. They have to do with culture and community.

Steve Silberman, the author of the influential book NeuroTribes, The Legacy of Autism and the Future of Neurodiversity, gave a two-part talk about the history and the future of autism—or I should say, the history and future of how autism has been identified and defined. As is reflected in his book, he advocated moving from a pathologizing medical model of autism and toward a more inclusive, neurodiversity-informed model, and during the “future” part of his talk he spoke a bit about the development of autistic culture.

One thing that stood out to me during this part of his speech was his experience attending Autreat (a retreat put on by autistic people for autistic people) as a neurotypical. He said that by the end, he had acclimated to autistic culture to the point that the NT world seemed very harsh by comparison. Listening to him, I was reminded of how much I have really longed to be able to attend something like Autreat, to experience that kind of autistic-friendly environment for myself. I feel like it could hit a sort of “reset button” inside me, to counteract some of the acclimation I have had to do to navigate NT culture.

The second speaker was Al Condeluci, who has done a lot of work related to supporting people with disabilities and creating ways to increase community involvement. In his talk, he spoke a lot about building social relationships that include people with different disabilities, rather than excluding them and isolating them in institutions or special programs. He pointed out that relationships are built on similarities—we seek to bridge the differences between us and find commonalities in order to relate to one another—after which we can begin to appreciate our differences.

At one point, Al talked about the process of helping someone build relationships in the community by seeking out groups that share common interests. He used the example of someone with Down syndrome who enjoys photography, and said that instead of looking for (or creating) a photography-focused social group for people with Down syndrome, it would be better to find a photography-focused social group for everyone, and introduce the photographer with Down syndrome to it in a way that made it accessible and welcoming for her. This not only allows this particular individual to build relationships within the broader population, it also increases visibility for people with disabilities instead of isolating and segregating them, as often happens.

Now, as part of a writing project I’ve been doing, I’ve been reading a lot about the Contact Hypothesis, which essentially states that positive contact between groups can (if done correctly) reduce intergroup prejudice and anxiety. There is a lot of research backing this up, and it’s one reason why it’s important to me to speak openly about being autistic. If people don’t know any autistic people—or don’t know they know any autistic people—it may be easier for them to buy into various stereotypes about us. So I am fully on board with increased inclusion and visibility for autistic people and people with all sorts of other differences and disabilities in society.

But the thing is, we also need our own spaces. This is where these two strands of thought become tangled for me. I do believe that building a more inclusive society requires more inclusive involvement, and it is clear that greater contact with minority groups can really change attitudes. (This has been studied with regard to racial, ethnic, and sexual minorities, and probably others.) But events like Autreat, or even just small get-togethers among just autistic people, can serve as a powerful reinforcement that, as a minority, our ways of being and interacting are just as valid as others.

I also think it’s important to keep in mind that, when it comes to approaches people use to reduce ingroup/outgroup tensions, members of the majority (or otherwise dominant) group tend to prefer it when everyone becomes subsumed into a single, more-encompassing ingroup—in other words, when “us” and “them” become a unified “we.” It’s sometimes called “recategorization,” but another common word for it is “assimilation.” This approach de-emphasizes everyone’s differences and, at least rhetorically, insists that we are all the same because we are on the same team; you’ve probably seen this done with appeals to a national identity to unify different ethnic subgroups.

Members of minority groups, however, tend to prefer it when integration into a single group is done in a way that allows for each subgroup’s individual differences to be preserved. Working together on the same team is still valued, but instead of “the team” being seen as one big, homogeneous group defined solely by team membership, people are seen as having dual membership in the team and their particular subgroup. (And in reality, we all have multiple group memberships that overlap and intersect, but for now I’m trying to simplify.)

So this is how I see the resolution of the issue I’ve outlined above: I want autistic people to be visible and included (and appreciated) in the larger society, and I want us to have our own spaces where we’re not constantly pressured to accommodate the expectations of neurotypical communication. Because right now, if we want to be included, we have to make those accommodations, and I don’t see that changing anytime soon.

Reference: Intergroup Contact: The Past, Present, and the Future

Meeting People

Last Wednesday, I participated in a panel discussion at my community college for autistic students. Well, it was a panel of autistic students, but I suppose it was mostly held for the edification of faculty, staff, and other students. The questions related to our experiences in school on various levels: the physical and sensory environment, the social environment, academic expectations, etc. There were five of us on the panel, and our answers (and our communication styles) reflected a lot of the diversity of “the spectrum,” though of course not all of it.

One of my professors was in attendance, and we had a great discussion about the panel in one of my classes the next day. When he asked me what I had thought about the panel, I answered truthfully that the biggest thing I had gotten out of it was the chance to meet the other panelists! I really enjoy meeting other autistic people. We’re not all going to hit it off, of course, but there is usually a nice familiarity—at least on some level—that I’m not used to feeling with those of the predominant neurotype. And from talking to the other people on the panel, I clearly wasn’t alone in that.

In fact, except for one person who had to leave for a class right away, we all stayed an extra twenty minutes after the panel was done, in order to chat and get to know each other better. And we started talking about setting up some kind of regular get-together, like a casual drop-in lunch, that would allow us to stay in touch. I really hope we’re able to carry through with that, given that this semester is almost over.

Then the next day, on Thursday evening, I went to a social/support group for trans and non-binary people for the first time. And it was so cool to, again, find a sense of familiarity in other people’s experiences that I don’t usually get. Even when our paths had been very different, and our actual gender identities varied, the fact that each of those identities was accepted, and we could all talk openly about our feelings and experiences without the usual gendered assumptions was really freeing. I’m looking forward to going back again.

Both of those experiences last week—especially coming on back-to-back days as they did—highlighted what a difference it makes (for me, anyway) to meet people who experience the world (and/or themselves) in ways similar to my own experience, which is usually quite different from that of mainstream society. We’re not all going to agree on everything, but it’s just nice to know I’m not alone. And for the most part, I have found myself in very good company.

Reading People (Or Not)

Sometimes I just have to let things go. I find myself going over and over something I’ve said, second-guessing my own reactions and wondering if I’ve inadvertently said something wrong, pissed someone off, hurt someone’s feelings…but I’m not going to figure that out by rehashing it over and over. Either they’re going to tell me so, or not.

The trouble is, people often don’t tell me one way or the other, and therein lies the problem. I can’t help it if people don’t tell the truth about their own reactions, and I can’t be expected to just know. It’s been pretty well established that people with vastly different ways of thinking and experiencing the world have trouble seeing each others’ perspective—we think differently, so…we think differently. Damian Milton calls it the “double empathy problem,” and points out that it’s not a one-sided autistic “deficit,” but rather a mutual disconnect in our understanding of each other.

And I definitely know that my reactions to things have been misunderstood with great frequency throughout my life. I’ve been called selfish while I was actually bending over backward to make someone else more comfortable, and I’ve been called thoughtless when I was actually consumed with concern for someone else. That’s one of the reasons I worry so much about people’s reactions when I say something that might make them uncomfortable, or need to ask for something to change. I have no idea if they’re understanding me, or if they’re reading something into my words that isn’t there.

One problem is that I can’t really trust how I read people, so before I say something that might potentially be taken negatively, I have to prepare for all sorts of reactions. I kind of have to assume the worst, to be honest, just so I don’t get blindsided if and when they jump down my throat. (In my defense, I have also correctly predicted reactions that were all out of proportion to the situation, even when others told me that I was worrying too much, and of course that person won’t react that way. But those were situations where the person in question had previously overreacted and taken things personally, so I had already seen that pattern play out. It’s interaction with less-familiar people that sends me into a tailspin of self-doubt.)

My therapist noted this week that I seem to have problems “owning” my negative reactions to things, and she’s right. It came up toward the end of our session, so we haven’t had a lot of time yet to pick that apart, but a great deal of it is due to all of the above: expressing a negative reaction to things, even a mild one, has so often been punished that I do so only warily. Either it’s misinterpreted as a personal attack, or taken as me asking for special treatment instead of “sucking it up” and getting on with things. And so I’ve learned to be extremely diplomatic in my approach…but I still end up with no idea what the response will be, even when I think I’m being completely reasonable.

At least I can usually recognize what is reasonable and what isn’t, both in terms of my request or statement and in terms of the other person’s reaction. And I get righteously indignant when people react unreasonably. But that still leaves me feeling bruised and vulnerable, and wanting to crawl back into my shell and not engage in situations where I might need to speak up. Because that’s the tension I feel all the time: I can’t not speak up when something is unreasonably uncomfortable or unfair, but I hate speaking up to point those things out.

But you know? The times that I have spoken up, usually about things that other people were silently putting up with, I have always had at least one other person—and usually more—tell me that they appreciated that I said something, because it bothered them, too. I just wish they would take the initiative once in a while, because it sucks always being the one to reach a breaking point first. But I suppose our social and sensory sensitivities make that almost inevitable, like being the canary in the coal mine. The situation is toxic for everyone, but autistic folks are going to feel it first.