[This post was originally delivered as a talk at Autscape, in August 2019]
I want to start by asking you all to imagine an experiment.
So, imagine you are the researcher: you set up a game of Telephone: you recruit a bunch of non-autistic people and put them in a long line. Then, you tell the first person in the chain a short story. They have to pass on the story, in as much detail as possible, to the next person in the chain, and them to the next person, and so on, all the way to the end. The last person in the chain then repeats what they heard back to you.
You recruit the same number of autistic people, and do the same thing.
Then you recruit a mixed group: even numbers of autistic and non-autistic people, alternate them along the chain, and do the same thing again.
Still with me? Ok, so you take your results, and look at how much information was lost in the story as it went through each of those chains: all non-autistic; all autistic; mixed. Which chain do you think lost the most information?
As you can see, the mixed chain lost a significant amount more information, compared with the other two chains, whose differences are statistically insignificant.
As part of the same study, Catherine filmed autistic, non-autistic and mixed pairs of people who hadn’t met before having a short conversation on a set topic. She then asked viewers of the videos to rate how well the pair got on. Here’s the results for that:
“We asked some participants to have a videoed conversation with another participant for five minutes. These videos were then watched by other participants who rated how well the two people in the video got on with each other, and how comfortable they seemed. Raters thought that when two autistic people were together they got on well, more so than when non-autistic people were together or when the pair were autistic and non-autistic”
The observers didn’t know the neurotype of the pairs, but consistently thought that the autistic pairs got on better, followed by non-autistic, then mixed pairs.
I encourage you to read the many other interesting parts to this study online, and I just want to add a caveat at this point that the study’s sample is pretty small, especially on the video activity, but it is undergoing more testing.
Given that we are all here at Autscape, these results might not be that surprising — especially for the degree of rapport many of us might experience with other autistic folks. Presumably at least a large number of you are, like me, here because (I hope!) you want to be around other autistic people, in an autistic space. Many of us know how valuable this is, but for it to be shown in research on autism is still really rare, despite what many of us have been saying for a long time. It wasn’t that long ago that parents of autistic kids were advised to keep them away from other autistic people… “what if they learn weirder ways to stim! What if they talk about their special interests together?! What if they make friends and connect over ‘weird’ things and become ‘more autistic’?!”. Even these days, I have unfortunately met occasional autism professionals who claim that all autistic people hate each other, and that there is no value to autistic peer support.
So, while I think it’s brilliant that this kind of research is finally happening, I know that some of the responses to it from autistic folks has, quite understandably been, well duh — and water is wet! But I actually think even while some of this might be intuitively obvious to many of us, there’s still a lot of value that we, as autistic people can take from it, to start thinking more deeply about these and related ideas, and what it means — and perhaps also to influence more in-depth research in this area in future. It’s also important to acknowledge, I think, that not all of our connections with each other are easy or filled with excellent rapport. However, if we take Catherine’s results as a starting point, we can begin to think more about why communication doesn’t work so well between us sometimes, and why some people feel excluded or uncomfortable within autistic communities.
One of the things I found most interesting and thought-provoking about Catherine’s results, was the strong rapport observed between autistic people talking with each other, compared with the mixed and non-autistic pairs, and that got me thinking a lot more about the intense connections that we sometimes form, and that I have formed in my life.
When I was growing up, long before I realised that I am autistic, I didn’t have all that many friends — we traveled a lot, and when I was younger I was mostly happy sitting in the corner of the school playground looking for interesting rocks and bugs, and singing made up symphonies to myself.
When I got older, in highschool, I did want to make friends, but found it very difficult, and was bullied and rejected by other kids quite a lot. Every now and then though, I would form these very intense friendships or connections with certain individuals. This continued to happen over time as I grew into an adult — sometimes they’d be friends, sometimes mentors, sometimes romantic partners, sometimes just passing acquaintances who I’d have very intense conversations with — but what always made them stand out to me was the intensity of connection. I’d go from not really being that interested in being around other humans, or at least finding it all very difficult and confusing, to really loving hanging out with these people, caring about them, and feeling understood. I found these people so easy to understand, in contrast to everyone else around me.
I used to worry about this intensity, and think there was something wrong with me — everyone else I knew socialised in groups, seemed to have several close friends, and generally seemed less clingy, fixated and… intense. Plus it was annoying for me to go from wanting to focus solely on learning all the dog breeds, for example, to focusing so much on other people! (This is coming from someone, I should add, who as a kid had a huge meltdown because my dad ‘tainted’ my first ever camera *ONLY FOR DOGS and SOME OTHER ANIMALS* by using it to take a photo of some family friends.)
You might be able to guess what I’m going to say: a significant number of these people, it turns out, have either since realised that they’re autistic, or knew all along, or have since at least wondered about their neurology, and relate to significant parts of autistic experience. Not all of them I should add — I think with some people I was just relieved to feel wanted and listened to, but certainly this was true of those with whom there was a more mutual understanding.
But why were these connections so intense? As I mentioned, being quite isolated or ostracised can play a part, as well as a general tendency towards intense focus, but for me, also meeting someone who gets me, and who I also find shockingly un-baffling, felt so vanishingly rare for so much of my life, that it was like meeting another person who speaks my mother tongue, after living in a foreign country for a long time — I may be able to speak the local language, but to express myself more authentically and fully I need my mother tongue. Finally having someone I can do that with is therefore so, so welcome. It is intense for its rarity and also, I believe, it is a kind of love, for those who are like me and who also understand me.
This is my fourth Autscape, and I have done a fair bit of autism-related stuff since the first, including getting many recently-identified autistic folks together to chat and share their experiences, and in the last few years I have seen many people go through similar processes of recognition and connection, over all kinds of different things. My first Autscape was when I realised that, when I’m around many like-minded people in a friendly space, I can actually enjoy being amongst groups of humans — even staying away overnight. My first Autscape was also where I really started to realise that these individual incidents of intense connection with others could translate out to a broader sense of real belonging — something I hadn’t really experienced before.
“Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other.”
I think it also follows that people with very similar experiences of the world may find it easier to empathise with each other. Most people who are more neurotypical are likely already very used to this, which incidentally is why I think there is still a belief by some that autistic people aren’t empathetic — if most of the people around you are largely in sync with your experiences, emotional, sensory, and so on, then your guesses about others’ internal states are going to be pretty accurate most of the time — they’re like yours, after all, but that doesn’t necessarily make you superior at empathising. Those of us who are less like the majority might guess wrong more of the time, but it doesn’t follow that we are less empathetic or less able to understand other humans.
In fact, one of the great positives of these intense connections that we sometimes form with individuals and communities of people like us, is in creating a sense of validation that we are ok as we are, and that our experiences of the world, mirrored, related to and talked about by those around us, are real and ok. As autistic people, many of us have experienced repeated invalidation, throughout our lives, of our experiences, because they aren’t understood, or don’t fit dominant narratives.
All too often we can end up internalising this invalidation. For the longest time, to give a minor example, I thought that my not being able to hear in noisy environments was a personal failing, because I wasn’t trying hard enough, or didn’t care about other people enough to listen properly — because everyone else around me seemed to be able to hear, and no one seemed to understand my problem. It was only by getting to know other autistic people that I learnt that sensory and multi-channel processing difficulties is a real thing, that it wasn’t about me being bad or wrong.
Dominant medicalised and deficit-based narratives of autism often don’t help here — I have met autistic people who have been told, and believe, that they don’t have an imagination because they are autistic, yet produce amazingly imaginative artworks. When I was first diagnosed, I took our supposed ‘deficits’ in social communication / interaction somewhat at face value — it validated my social struggles, in a way, so I no longer had to blame myself, but it also made me want to just resign myself to giving up on humans entirely. Imagine my surprise when just a few months later I came to my first Autscape, and realised I perhaps like people more than I ever previously imagined! I’m still a little baffled at how interested I’ve become in other humans these days, compared to just a few years ago.
Along with this validation also comes growing confidence in our identities, preferences, the truth of our experiences, and, importantly, confidence in self-advocacy and the language of self-advocacy. I didn’t just learn that it was a Thing, for example, to not be able to hear in noisy environments, and it wasn’t my fault; I also learnt how to ask to be accomodated. “Hey, I can’t process speech with so much background noise. Let’s go somewhere quieter.”
I learnt from others who experience the same thing, and over time through trial and error, that specificity about the problem, and what I need, can be much more effective than struggling in silence, giving up, or saying “I’m autistic” and hoping others would figure out what I needed. Knowing what I actually needed, and how best to explain or ask, was also something I could crowd-source from the community.
Just discovering that we are autistic doesn’t automatically give us insight into exactly why we might find some things difficult, or what strategies or changes might help, especially if we have had years of being told we are wrong, and not had the opportunities to develop our own healthy coping strategies (too often, we are even told that our existing healthy strategies are bad). It is a process of self-discovery, reframing, and self-understanding that I think can only really happen with the help of having like-minded people around us, or those with similar life experiences, to bounce off ideas and share.
So this feeling of validation and belonging can be really, really important. When I was growing up, I traveled a lot between the UK and China, and being half Chinese as well, I always assumed, and was effectively told, that my sense of alienation and disconnect from those around me was to do with not being around others who are mixed like me. One summer when I was about 16, I was shortlisted for a teen writing competition. I didn’t win, but one of the winners read his piece, and it was all about him being half British and half East Asian. I was immediately desperate to meet him, imagining that we would have a moment of magical connection.
Well, long story short there wasn’t. I was super awkward and weird, and he got away from me as quickly as possible to join his friends. Over the years, I have met many more people with similar peripatetic childhoods and cultural experiences to me, in terms of displacement, and ethnicity, and while we often found many things in common, these connections often didn’t feel like they were helping me figure out the whole story.
In many ways, I think I have been fortunate here with my autistic identity, in that I have been shockingly average — I even score definitively highly in the AQ, which so many other autistic people can find problematic in capturing their experiences. In short, for the first time in my life, I experienced fitting in with a dominant narrative. I would talk about aspects of my experience that I previously thought no one understood, and hear it reflected back to me by many other autistic people. I would try strategies like using noise cancelling headphones, getting instructions written down, and figuring out calming ways of stimming, and they often worked. It turns out, there can be something very confidence-boosting about being shockingly average.
But what of those who don’t fit so easily? Those whose narratives don’t mirror so much with the more dominant narratives within our community? I have met many autistic people, new to their diagnoses or self-identification, who start to question it and feel less part of the community or connected with other autistic folks, because something that’s ‘supposed’ to be part of common autistic experience doesn’t chime with them. Sometimes this could be to do with not yet understanding how their experience is similar to what others are talking about, and sometimes it could simply be that they don’t experience these things — but this doesn’t necessarily mean that they are not autistic. Some people, for example, don’t experience meltdowns, while others might experience or think of them in ways that don’t immediately fit with mainstream descriptions.
And here we come to some of the pitfalls of this intense connection and sense of belonging. Communities and identities don’t have to be, but can be, exclusionary. While many of us may have experienced a lot of invalidation throughout our lives, it can be particularly devastating to have our experiences again invalidated by a community we finally feel like we are part of. It is really important here, I think that in developing our own autistic identities and connecting with each other, we are careful not to invalidate others’ differing experiences just because they don’t quite fit with what we know. The autistic population is extremely diverse, and many of us are very good at not fitting neatly into any boxes. The reasons for this can be many and varied, from general variation between individuals, to life experiences, cultural backgrounds, and our other intersecting identities.
Interestingly, one of the very few ways that I felt out of place, and had frustrating assumptions made about me at Autscape, has been about my race and cultural background. I remember looking around towards the end of my first or second Autscape, and realising that I was the only non-white person in the room. Culture can also bring up some of the ways my autism-relevant narrative differs from many other autistic narratives I’ve come across. I have traveled a lot, literally since I was in-utero, so traveling to new places usually isn’t a huge problem for me; my handwriting in English is pretty neat, but this was after years of being drilled in Chinese handwriting, which is much more precise, while having the worst handwriting in the class. I even wonder if I might possibly have a less expressive form of delivery when talking if it wasn’t for the ‘dramatic intonation’ classes every Chinese kid has in school, in which, partly for cultural education and partly because Chinese can be quite monosyllabic-sounding, we were taught to recite ancient Chinese poems out loud with a specific exaggerated cadence.
Of course, I think most of you do know that these autistic stereotypes are not rules. Many autistic people love traveling to new places, many of us don’t have scrawly handwriting, many of us are very expressive when talking, and many of us are the opposite of all of these — and none of this makes any of us less autistic. There is no contradiction in having broad tendencies within populations alongside individual variation.
My perceived cultural difference was also, incidentally, how others often explained away my differences. Much like with Nat’s talk at Autscape last year about how their joint and mobility issues growing up distracted or stopped people from identifying their autistic traits, I have been told by teachers that my tendency to organise things must be to do with having lived with Communists, that my quietness in some classes was to do with this idea that all Asian kids are quiet (which didn’t explain why I was so loud in other classes). I’ve also read conjecture that eye contact maybe isn’t so much of an issue for autistic people in Asian cultures, because eye contact can be read as rude. I still wonder if there might be some truth to this in certain situations, but this Spring I met up with a group of Chinese autistic self-advocates in Beijing, and one of the first questions one of them asked was, “how do you manage in conferences and meetings, when people expect you to make eye contact to get their attention, or to see they’re trying to get yours?” Everyone present seemed baffled at the idea that eye contact might not be a problem many autistic people in China face. (Incidentally, the most recent person to comment on my lack of eye contact in recent times was a non-autistic East Asian guy)
Going back to being the only non-white person in the room, I have been part of many autistic communities that have struggled with how to include more people with differing cultural and racial backgrounds, as well as different class backgrounds, and LGBTQ identities, and I think that the challenge of fully including these intersecting identities is really important, and can be very valuable.
People can feel excluded from our communities and identities because the dominant narratives don’t fit with the other bits of their identity — which is partly why, for example, we are seeing so much more said now about other presentations of autism, like autism in women, autism and gender nonconformity, etc. However, even for those of us who don’t feel excluded, the over-identification we might feel through our intense connections can lead us to erase or ignore other important parts of ourselves, in order to fit. In the past I met people who I connected with and related to easily so rarely, that I often thought I needed to be exactly like them in every way — I didn’t dare to explore fully what my own preferences or differences might be, in case that somehow led to losing or breaking that precious connection. Even as I got to know lots of other autistic people here in the UK, it still took me a long time to feel that I could explore my cultural identity, because it wasn’t something that the others I otherwise connected with so well could relate to; it didn’t fit with others’ narratives. The people around me I related to and connected with most strongly were often white, non-binary, generally gender nonconforming or male autistic people, or those with related neurologies. So while I felt able to start exploring my gender identity, I sat on my cultural background for a long time. I should add that this wasn’t because anyone told me I was wrong, or belonged less for being mixed race, but it can be so comforting being shockingly average for a change, that sometimes we don’t want to give away that actually we are not so average after all.
Even over the last three years of coming to Autscape, I have seen a change in its greater inclusion of trans and non-binary identities. People who have never thought, or never had the safety, to question their gender identity or presentation have been empowered to do so not just because they feel they are in a safe autistic space, but because they are in a safe queer space, where questioning recieved categorisations and ideas about gender is relatively normalised. A safe space to explore means being able to be curious and experiment, and feeling able to talk about experiences that differ without fear of judgement or exclusion.
Part of the problem can be assumptions. When people make assumptions about my cultural background, just as when people do that about my gender identity or neurology, I might feel angry, or frustrated, or defensive, maybe invalidated. An example some folks here might relate to is having people assume you’re less able, or reliable at understanding a situation, when they find out you’re autistic. Being autistic, being half-Asian, being non-binary — all of these are useful names for various bits of my identity, and a potential starting point for connection, but they also tell people who aren’t me relatively little about what it’s like to actually be me. To find that out, you’d have to ask, and I’d have to want to answer.
Embracing these many diverse narratives isn’t just about inclusion, it is also about enriching our understanding of ourselves and of other humans. Just like the people who have been able to explore their gender identity more through being around others openly talking about it, we need to encourage and value more diverse narratives from all kinds of different intersecting identities. We are diverse, but we are also connecting intensely on so much; we can be good at spotting patterns and good at not fitting into boxes; many of us know what it’s like not to have our narratives heard — so we could be especially well-equipped, as a community, to understand what it’s like to not fit, figure out commonalities, investigate differences, and learn from that awesome diversity of experience.
Damian writes in a number of his pieces about the value to one’s identity of constructing an “aut-ethnography”, a continually evolving personal narrative, that is a conscious act of recreating the self from fragments of experience, rather than imposing a coherent narrative over time, or being defined from the outside, which autism and autistic people too often are. He says,
“As an autistic person, my own sense of identity is not a coherent one, nor is it a completely fluid identity. For me, memories and sense of self are experienced as fragments, painstakingly structured and constructed to make patterns. Such patterns are movable, yet they shift and alter each time one attempts to view them”.
Autistic Development, Trauma and Personhood: Beyond the Frame of the Neoliberal Individual, Damian Milton, (2017).
It is important, I think, as we gain insights into the different parts of ourselves, that we also realise how these insights can shift and change our sense of who we are, and that we are able to allow for that to happen.
So what can we do as a community, and as individuals, to do this for ourselves, and help others? Well, I think that we need to try to be mindful of this intensity of connection, and sensitive about not unintentionally (or intentionally) invalidating or undervaluing another autistic people’s experiences, just because they don’t immediately sound like ours — especially with people who are still new to their autistic identities, and less confident in their self-understanding. Opinion or preference can too easily come across like judgement or a prerequisite, especially when people are desperate to belong and find points of commonality. Someone sharing, for example, that they like parties being told “well I’m autistic and I hate parties” might find that alienating, I learn nothing more about why our experiences might differ, and it stops the conversation dead or can even turn it into a fight. Being sensitively curious about why they like parties (asking, “huh, what do you like about them?”) might give me insight into how to potentially enjoy them myself, or I might learn that all their parties involve cute dogs, nerdily talking about special interests, making art and eating nice food, which I’d probably be into — or they might just be very different in how they experience or handle social situations, and that’s ok!
Above all, I think we need to try to approach others’ perspectives and experiences with a sense of radical acceptance and trust. There is a reason any given person is connecting with the autistic community, that autistic experience rings true for them, that they are self-identifying or wondering or have received a diagnosis — that’s not to say that everyone is always right all of the time, but that is also really not our job to judge. Instead, through actively listening to, accepting and being respectfully curious about our many varied experiences, how they are influenced by our other identities, we can better include other groups who are underrepresented, learn more deeply about ourselves, and about what it is to be autistic. If Catherine’s study, which I described at the start, is representative, many of us might find connecting with other autistic people, in general, more intuitive, and passing on information more effective — we can use that connection to learn rather than divide, and when that connection isn’t happening, we could learn more through trying to understand why. Hearing about others’ diverse differences can help all of us to be more truly ourselves, not just as autistic people, but as people at the intersection of all our different identities. We can make these intense connections deeper, less potentially destructive or exclusionary; more valuable and inclusive.
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