Peer Pressure and Authenticity

I had some trouble sleeping the other night, and as I was lying awake at 4 AM, I encountered a random memory from my childhood. I was at a public swimming pool with a friend, and we were watching people jump off the high diving board. The really high one, with the long ladder that took forever to climb up, and even longer to climb back down.

My friend and I had been diving off the lower diving board, or at least jumping off it; I wasn’t great at diving, and sometimes ended up with water up my nose when I dove head-first. That was very unpleasant, but I hated those pinching nose clips, which tended to come off when I hit the water anyway. In between jumps, my friend dared me to jump off the high dive, and said she would do it if I did. I told her I wasn’t interested, and swam away.

The thing is, I had already tried that once, which is how I knew that it took longer to climb back down the long ladder than it did to climb up it. I got up there once, and simply couldn’t do it. I couldn’t jump. I felt a little embarrassed at having to climb back down the ladder in front of the other kids, but also intensely relieved that I didn’t have to do it. So that day in the pool, I knew this about myself. I didn’t like heights, so just climbing up there would have been unpleasant. And I knew from a couple of roller-coaster experiences that I didn’t like that feeling of falling, the way my stomach seemed to lurch up into my throat. Throwing myself off of a high diving board was not something I cared to do, especially not to satisfy a dare from someone else.

It’s not that I didn’t care what my friend thought of me; I just didn’t care enough for it to outweigh my own preferences. And because my friend was not an asshole, she didn’t make a big deal of it, and we continued to have a good time at the pool. I think she did go off the high dive, and I watched and cheered for her. If she had been an asshole about it, we wouldn’t have remained friends for long. That’s something I knew from experience as well, having had “friends” who turned on me over petty (or nonexistent) things in the past.

I think about things like this when I read about studies related to autistic people and what is called “reputation management,” or the presentation of self in a way that is designed to enhance others’ opinion of you. Self-presentation in general is an important part of social interaction, and it’s an aspect of sociology I’m particularly interested in studying with autistic people in mind, both in terms of reputation management and also in relation to autistic “masking” and “camouflaging.” In one particular interview study, Cage, Bird, and Pellicano found that autistic adolescents did have a desire to fit in with others, but many also valued authenticity and being true to themselves; they wanted to be accepted as someone who was different, rather than simply conforming.

This rings true with my experience, as in the diving board example above. I wanted my friend to have a good opinion of me, but that concern for my reputation was not as strong as my desire to not do something I didn’t want to do. In other cases, I did my share of camouflaging in order to fit in, but there was always a line where reputation concerns lost out to personal preference and/or authenticity. They still do.

This is a balance that everyone has to strike, I think; if we only care what other people think of us, we risk becoming a doormat instead of being ourselves. But I do wonder whether autistic people reach that tipping point—where a desire for authenticity outweighs reputational concerns—sooner than non-autistic people. Or maybe some of us are already masking our autistic traits so much that we just reach a point of exhaustion and can’t add on any more self-presentation strategies. Or possibly both things are true.

Finding Your People

One of the common themes in a great deal of autobiographical writing by autistic people is a pervasive sense of not fitting in, even among one’s own family. That’s one of the reasons that learning that one is autistic later in life can come as a profound relief; after a lifetime of feeling different, there is finally a name for that difference—or part of it, anyway. (Being autistic isn’t the only way a lot of us are different from others, but I think it’s often related.) Having that understanding often replaces a feeling of simply being bad or wrong for not fitting in or doing things “right.”

But having a name for it also does something else that has been equally profound for me: it provides a way of looking for others. Learning that you’re part of a neurominority gives you the language to seek out others in that same minority, with whom one might find common ground. Of course, like any minority (or majority, for that matter), autistic people are not monolithic; common ground isn’t necessarily automatic. But I have found—and have heard it echoed by many others—that it often takes less effort to connect with the thought processes and interaction style of other autistic people than with the world at large.

I have noticed that descriptions of autism often include depictions of non-autistics as “naturally” understanding social interaction and social cues in a way that we do not. But a great deal of research in sociology and social psychology has centered on a) common breakdowns in such communication, b) understanding how people learn these things through the process of socialization, and c) how they differ across cultures. They’re not innate, and they’re not infallible—not for anyone.

Now, maybe that begs the question of why autistic people don’t seem to absorb the same lessons about social expectations as others; there seems to be something innate that makes our social styles different. (I suspect a combination of monotropism and sensory differences, which may themselves be related.) But the impact of that difference can vary by culture, too: for example, cultures vary in how, and how much, eye contact is used. Being in a subculture focused on a particular interest feels different than being in a group of people making small talk. The social environment you’re in shapes social expectations, and makes it more or less likely for you to be able to meet them.

So finding other people who have a similar social style can feel like coming home to one’s native culture after trying to make do in one that is different and much less comfortable. A lot of us get pretty good at the latter, but that doesn’t mean it’s easy. And when it seems easy to everyone around you, it again starts to feel like you’re bad or wrong. Finding other neurodivergent people who are similar to you (which, again, won’t necessarily be all of them, and I also don’t mean to say connection isn’t possible across neurotypes) can go a long way toward alleviating those feelings by reflecting back a different way of being and socializing that feels more like home.

This is one more reason I embrace the label of “autistic” as a social identity, as I mentioned in a recent post. Doing so has allowed me to find community. It’s not my only community, but it is extremely precious to me. It is my hope that identifying as autistic will also allow others to connect with me, so we can build that kind of community for more of us.

Difference, Disability, and Disorder

Part of being autistic means that I process things differently than most people. Sensory input, social cues, emotions, physical sensations, information from spoken or written words—all of these come in (or arise within me) with varying degrees of intensity, and sometimes get tangled up with one another. Sensory input can distract from social cues, for example, and information in spoken form may be missed if I am trying too hard to attend to social expectations. And both social and sensory input can easily become overwhelming and/or draining, especially if I encounter high levels of both at the same time.

The way I present my own thoughts and reactions to things is different, too; I gesture extravagantly when I talk, but my facial expressions are often minimal, and may not reflect what’s going on inside. I don’t have much vocal inflection unless I really pay attention to it, and I prefer to converse for information rather than social purposes. Plus I often see patterns and connect dots many people don’t, and this sometimes makes it hard to follow my line of thinking unless I explicitly outline each step (which I often neglect to do because they seem so obvious to me).

These things make me different, and they can also sometimes be disabling. Or, to be more precise, they can lead to my being disabled by certain situations—the social and sensory overload at my reunion dinner earlier this month is a good example. (And I didn’t even mention the huge crying meltdown I had when I finally got back to my hotel room and tried to get to sleep, as well as the exhaustion I felt for the whole week afterward.) I have also been at a disadvantage in social interactions such as job interviews, where “people skills” and nonverbal communication are evaluated at least as much as experience. And, of course, I have experienced my share of social exclusion, especially when I was younger.

So in some contexts, I have felt disabled by my differences. But does that make them “disordered”?

Autism is, of course, defined in the Diagnostic and Statistical Manual of Mental Disorders. Its entry also has “disorder” right in the name: “Autism Spectrum Disorder.” And like most other entries in the manual, its diagnosis assumes impairment of “normal” functioning. But this glosses over some important considerations about what constitutes “normal.” Especially when it comes to “disorders” of social communication, the social context is at least as important as any individual “impairment.”

Research into autistic social communication has found that misunderstandings between autistic people and non-autistic people are a two-way street, something that sociologist Damian Milton has termed the “double empathy problem.” Meanwhile, some other new research has shown that social interactions between autistic people are as effective as those between non-autistic people in terms of communicating information and generating rapport. Where communication breaks down is between autistic and non-autistic people (again validating Milton’s concept of the “double empathy problem”).

These findings reflect my own experiences, although of course there are autistic people I don’t connect well with, and non-autistic people I am very close to. But to say that my social and sensory differences constitute a “disorder” in contrast with “normal” functioning is…well, normative. Would I really be better off if I could tolerate, or even enjoy, an experience like my reunion dinner, but lost the sensory sensitivity that allows me to notice so many subtle aspects of my environment? Or if I cared more about social standing and interaction than getting lost in hyper-focused research into a favorite topic? Being like the majority has its advantages, but so does being me.

So yes, I am different. I am sometimes disabled by the combination of my differences and inaccessible environments or rigid social expectations. But I reject the label of “disorder” even as I embrace the label of “autistic.” Learning that I’m autistic has been immensely helpful. Knowing this earlier might have helped me avoid the massive burnout I experienced in my early thirties, due to not understanding my own social and sensory needs. Because in the right environment, or with the right supports, I don’t feel impaired, and I have no problems socializing. (I had a lovely dinner with friends two nights ago, for example.)

That burnout hit me hard, and led to reduced employment and financial difficulties. It also forced me to make a lot of changes in my life in order to cope with stress. Many of those changes were positive, and all of them put me on a good path in the long run, but it was a tough transition (and it would still be years until I got my diagnosis). And certainly there are autistic people with challenges different from mine, and/or with additional disabilities, who find the world a lot more disabling. But whenever I think about ways to make the world better for autistic people across the spectrum, they don’t involve changing us. Instead, they involve making things more accessible to people with varying sensory and social needs, people with different communication styles and methods, and people who experience the world differently.

Removing my differences would also make me fundamentally different. That might make me more like others, and closer to the norm, but who is to say that would make me better? And who is to say that the world would be better for it, too?

Too Much and Not Enough

Boston skyline with trees in the foreground and blue sky above it.
The view from the balcony at dinner.

I’m still processing some feelings about my 25th college reunion this past weekend, and how it relates to moving forward into graduate school this fall. I want to write more about that later as I figure it out, but today I want to unpack the most stressful aspect of the reunion, which was the class dinner on Saturday night.

I met up with a friend for the reunion, and this was the only scheduled event we had registered for, and it kind of dominated the whole day. We drove in early to attend an alumni memorial service (and to beat the traffic), so the day stretched very, very long before dinnertime came around. (It would have been harder to take a break and go back to the hotel than to stay on campus, due to the traffic and numerous other events going on in the area.) It didn’t help that I had slept very poorly the night before, due to the unfamiliar hotel bed.

We did have lots of time to walk around, take pictures, do some shopping, and have lunch, but all of this meant that I was pretty worn out by the time dinner rolled around. Then it started with a cocktail hour, with very few places to sit. The venue was pretty, with a nice view of the city, but standing for an hour after walking so much was very tiring. And while most of my day had been filled with one-on-one conversation with just my friend, now it was expanded to small groups. At first this was ok, because while it was more to keep track of, it also meant that I could just listen to some parts of it, without feeling the need to reply to everything.

I was happy to hear when dinner was ready, both because I could finally sit down and because I was getting pretty hungry at that point. Walking into the dining room, though, I found it disappointing that a) there wasn’t much of a view from that room, b) the tables were packed in pretty close, and c) dinner was a rather underwhelming buffet. I was expecting better food for the price of registration and the (admittedly vague) description of the dinner as “upscale.” Once things got going, however, these were very minor issues compared with the overwhelming nature of the social and sensory environment.

Reflecting back on it after the fact, it’s interesting to note that I didn’t have any issues with social anxiety that whole day. Instead, what came to a head during dinner was a combination of two separate, but related, issues: sensory overload and social overload. In terms of sensory overload, there were a few hundred talkative people all seated in the same room, plus a string quartet or something (I didn’t get a good look) playing in the corner. The noise level was overwhelming, especially all of the voices coming at me from all sides. People sometimes describe noise like that as a roar, or a wave of sound, but for me it doesn’t blend together. It was all separate, and never stopped. Eventually my head felt fuzzy, like my brain had been shredded into fluff by all of those individual needles of sound.

This was bad enough, but it really exacerbated the social overload that was also going on. This had already started, of course, given that I had spent the past twelve hours in near-constant conversation and interaction. So by the end of the day, the addition of more people to all of that interaction really started to take a toll. And with all of the noise, it was extremely difficult to understand what people were saying to me if they were more than about a foot away, and of course people were trying to talk across the table. So it required more and more focus just to follow what people were saying, and often I had to ask people to repeat themselves. And asking just increased the amount of interaction required, so it didn’t take long before I was starting to shut down.

I was able to get up and leave the room once I had finished my dinner, and there was a nice balcony with a view of the Boston skyline. It was quiet out there, and cool, so I was able to recover a little bit. I headed back in when I felt better, but if anything the room seemed even louder after taking a break from it. I didn’t last very long this time, and let my friend know I couldn’t take any more. To be honest, all I could really manage was something like, “I can’t do this,” while shaking my head and getting out of my chair. I fled back into the next room, where I found a table and sat down.

My friend followed me a few seconds later, along with another friend of hers we had been sitting with. They asked if I was ok, and at first all I could say was, “No,” but then I explained that I was overloaded and done being in the dining room. My friend was ready to leave, too, so we said goodbye to her other friend and headed out. I was extremely tired, but I think I was still really wound up from all of it, because even after we got back to the hotel I couldn’t relax enough to get to sleep. (I also needed to stay up a bit to eat some of the snacks I had brought, because I hadn’t really eaten enough dinner.)

The whole experience was both overwhelming and underwhelming at the same time, and the underwhelming nature of the dinner itself made it really not worth dealing with the overwhelming social/sensory aspects. Other than wearing noise-canceling headphones (which were all the way back in my car and would have made me extremely self-conscious), I can’t really think of anything I might have done to improve the situation. Sitting in a different location in the dining room might have helped, but it was very unclear where the best place would have been. Even around the edges of the room, it was hard to find a spot that wasn’t close to one of the buffets, or a busy doorway, or the musicians. Short of filling my plate and taking it outside to eat, I couldn’t really have taken more of a break from it—and at first I was really enjoying the conversation, so I didn’t want to just bail on my whole table right off the bat. Mostly I was disappointed by the whole situation.

It has taken me a day or so to recover; I didn’t sleep well again that night, and then I had to drive home in the morning. My body bounced back from the hours of walking, but my brain was still fried. Ultimately, I think having a larger venue so the tables could be spread out more, perhaps with smaller groups of people clustered in different areas, would have helped immensely.

And, of course, better food.

Social Influence

I was looking back at some writing I did for my social psychology class last spring, and found some thoughts I wanted to share and expand on here. The subject in question was conformity and group influence, and specifically the classification of influence into two types: normative influence and informational influence.

Normative influence is essentially when you follow what others are doing in order to fit in. This might manifest as peer pressure, but also things like following the ways of a different culture when visiting. Informational influence is when you follow what others are doing or saying in order to get things right. When you don’t trust your knowledge in a given situation, you might go along with the crowd if they seem to know what they are doing.

As I was reading about this, I kept thinking about how these concepts apply to autistic people. I don’t think we’re immune to social influence and the pressure to conform, but our relationship to social interaction is often so different from the typical population that we may respond to them in different ways.

For example, the textbook mentioned that people often respond to normative influence without realizing it; they pick up social cues and adjust their behavior accordingly to fit in. It’s a sort of unconscious conformity. But for an autistic person who may not intuitively notice or understand those social cues, what often results is not unconscious conformity but unconscious nonconformity. The social rejection that often follows is then completely baffling.

Personally, I think many autistic people blend informational and normative influence to a large extent: we absorb the social “rules” through an informational process of studying others and learning what we’re “supposed” to do. We may then follow those rules for normative reasons, but we got there through an informational process. There was an example in the book where the author was in an audience where people rapped on the table instead of clapping, and I found this to be a good illustration: due to normative influence, the author didn’t want to be the only person clapping, and he learned what to do instead through informational influence. I think this is fairly typical of the way autistic people use the two to try to fit in.

I also, however, experience a strong aversion to some forms of normative influence; in many cases, I just don’t care to do what everyone else is doing. If something seems nonsensical to me, I’d rather simply be elsewhere than follow along to fit in. (This likely underlies some of my problematic relationship with groups, as mentioned in last week’s post.) I also tend not to privilege group consensus over my own research or perceptions when it comes to factual matters. I’ve seen both of these attitudes in a lot of other autistic people, too, and it really makes me wonder what would happen if some of the classic conformity studies were repeated with autistic participants.

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

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.