23 August 2017

Thinking about patterns of opposite extremes among autistic people

About a year and a half ago, I posted this list of characteristics that seem to be much more common in autistic people (especially the more of them a person has) than in non-autistic people. But both while writing that list, and over many years of thinking, being with other autistic people, and learning about many of our experiences, I keep noticing this one pattern among our experiences -- we tend toward extremes of the same phenomenon, both between different autistic people (and thus, observable sub-groups of autistic people) and within the same person (often dependent on context).

Other people have noticed the same pattern in some contexts, like the rough split between sensory-avoidance and sensory-seeking, and noting that an individual autistic person can be both very sensory-seeking in some contexts but very sensory-avoidant in others. Or in noting autistic people's relationship to math -- apparently roughly half (this is not a scientific number) of us struggle intensely with and hate or at least dislike math, while the other rough half of us have a deep affinity and love for math. Or in noting autistic people's use of verbal speech or writing -- many autistic people rely heavily on text-based forms of communication, especially with widespread availability of instant messaging apps, but there are many other autistic people who have such difficulty processing language that they have extreme struggles with text-based forms of communication.

But I've also noticed this phenomenon crop up in about a million (still not a scientific number) other contexts, such as the following:

(1) Autistic people tend to be either extremely gender non-conforming and oblivious (or deliberately indifferent) to gender norms and expectations, OR, extremely gender-conforming, and hyper-attuned to gender norms and expectations (regardless of whether this related to compliance-training in a very patriarchal society).

(2) Autistic people tend to be either asexual (or somewhere on the asexuality spectrum, including gray-asexual or demisexual), and indifferent or totally repulsed by sex, OR, hyper-sexual, and very desiring of and interested in sexual intimacy.

(3) Autistic people tend to either hold very intense and long-lasting grudges (even for many, many years) and resentment, OR, to let go of wrongs and slights very easily, and have an intensely forgiving and merciful nature.

(4) Autistic people tend to be either extremely aware of and affected by their surrounding climate (temperature, humidity/dryness, etc., either indoors or outdoors), OR, extremely oblivious and indifferent to these factors.

(5) Autistic people tend to either like their drinks/food to be at very cold/hot temperatures, OR, to like their drinks/food to be closer to room temperature and only mildly cool or mildly warm.

(6) Autistic people tend to either develop very strong feelings/opinions about autism and disability-related politics (regardless of what those opinions are), OR, are very indifferent to and uninterested in autism/disability politics.

(7) Among autistic people who do autism/disability activism, we tend to be either very interested in and excited by critical theory type work, OR, we tend to be totally uninterested, put off by, or even irritated by that type of work.

(8) Autistic people tend to be either extremely regimented and strict about timeliness and schedules, and have very high anxiety when timeliness/schedules don't work out, OR, have extreme difficulties in understanding time, and following schedules/keeping appointments/being on time to things.

(9) Autistic people tend to either do really well in school or at conventional/traditional academics (either in K-12, or in college, if they get to go), OR, struggle immensely with school and conventional/traditional academics (either in K-12, or in college, if they get to go), and even fail out.\

(10) Autistic people tend to be either deeply emotionally and intellectually invested in fiction (books, shows, movies, whole fandoms, etc.), OR, have extreme difficulty even cognitively processing or understanding fiction, let alone relating to it.

(11) Autistic people tend to be either really into extremely spicy foods, OR, have an intense aversion to basically anything spicy at all.

(12) Autistic people tend to be either stunningly adept at navigation/directions, OR, terrifying incapable of doing them.

On that one, I'm definitely in the second category ... In this photo, I'm pretending not to be totally panicked about being lost and confused while on the Tube in London. (The t-shirt, which isn't fully visible, has an upside down cat with bugged out eyes, and says, "I can't adult today," which in retrospect, was very apropos.) (photo by Eleanor Lisney from Sisters of Frida, and yes at some point, we got separated on the Tube, and at another point, we managed to get separated on *the Eurostar train going between different entire fucking countries*)

In each of these sets of patterns, the extremes can also exist in the same person. Someone might like certain categories of drinks/food to be at extremely noticeable hot/cold temperatures, but other categories to be at tepid/lukewarm temperatures. Someone might have high anxiety about other people making it on time to things and starting events on time, but also struggle greatly with any expectations of being on time themselves, simply because time is impossible for them. Someone might do very well with one type of school environment, and earn excellent grades and academic achievements, but struggle hard with another type of school environment (commonly they do very well with K-12 and then struggle with higher education, or the reverse).

Note that these are just a few examples, and I'm sure there are hundreds more that any of us could think of, that we've observed in our own lives compared to those of other autistic people we know, work with, love, teach, learn from, or live around.

What I find important about this type of pattern -- that autistics tend to fall into extremes of various characteristics, preferences, or access needs, both between different autistic people and within the same autistic person -- is what it means for accessibility. I don't really have answers or solutions, so much as ideas about starting points here.

For the difference between autistic activists who are really invested in critical theory approaches, and those who have struggles with comprehending critical theory (whether they like it, dislike it, or are indifferent in the abstract), maybe the important thing isn't to try to come to a community-wide consensus about how we will talk about theories relating to autism and disability. Firstly, there is not and has never been such a thing as a single autistic community (and personally, I've been really cynical for several years now that any autistic community truly exists). Secondly, we're a loud and opinionated bunch, and we tend to cling tightly to our opinions (this is very often a good thing, to be clear), so, all of us agreeing on something is highly unlikely to occur. Thirdly, even if we did try to come to some kind of consensus, I'm pretty sure it would be more likely to just fuck over everyone a little instead of making it workable in a meaningful way for everyone, since we'd be asking everyone to compromise their access needs all the time.

A better solution would be a process (not a one-time, end-all-be-all solution) that accounts for many different ways of doing and talking about activism, without treating one of them as better or more important than the others. We can value and support the people who are interested in, learn from, and are personally empowered by critical theory, so long as we also value and support the people who aren't interested in it, can't learn from it, and don't find themselves empowered much at all by it.

Most importantly, real access has to mean not valuing one group over the other (or one tactic over the other, or one access need over the other). When those of us who go to conferences and write academic papers using critical theory get more (or almost all, or the only) attention, funding, opportunities for speaking or leading projects or whatever, and so on, that sends a message that only those of us who can do (never mind like or not) critical theory are really important or worth being in the movement. When all documents, resources, websites, and blog posts use critical theory language, that means that a huge swath of people are automatically excluded. (To be clear, I don't mean that you have to have a formal education, or be upper-class, or have fewer disabilities, to be able to access critical theory. I just mean you have to personally have a brain that understands it, and many of us don't. Personally, I kind of understand it, but only sometimes, and a lot of critical theory concepts are very slippery for me -- but I know I can use at least some of it, and I can and do.)

I know we're (and I'm) not perfect, but I am committed to doing my best to respect everyone's access needs. I just know we can't do it by pretending even implicitly, that we have fairly monolithic needs, or by stopping once we merely acknowledge that we are all different. And I'm open to more observations of other patterns of opposing extremes, and suggestions for handling them -- I hope we can all keep learning from each other.


  1. Very Insightful, honest, and open. I think it seems pretty difficult to accommodate everyone, but we can strive to. Thank you, Lydia for this blog post!

  2. An interesting "Opposite extreme" I've noticed is that some autistic people seem to have very little interest in/anxiety over conforming to social norms, while others have an intense desire to "fit in". I wonder if this is determined at all by one's age of diagnosis (be it professional or self), one's gender/class/sexuality/race/etc., one's childhood, or the therapies they've experienced. Unsure if this is related, but I've also noticed that autistic people seem to lead towards specific special interests (mechanics, fiction--including specific shows and films--and others).
    Question: what do you mean by critical theory in relation to autism? I'm unfamiliar with the term used in that way.
    Thank you for the well-thought-out, well-written post on such an interesting topic ^_^

  3. I really like your blogs as you talk good sense and I enjoy your details on we as Aspie's/Autistics do things. However, I am turned off by your choice to use profanity. Though I do think that freedom of speech is important, I notice that you use a lot of it on social media and when you post yourself flipping the bird. That's fine but if you keep doing that, note that future employers are going to find your page and be turned off. Also, when you use that language, you are sinking to the level of those who bullied and abused you with those same words.

    1. Dear Anonymous,

      I really like your comment as you seem to care about Aspies/Autistics. However, I am turned off by your condescending and frankly just flat out wrong demeanor in replying to Lydia. See, first off, Lydia isn't required to adhere to your ideas of respectability because Lydia is a person who has a right to express their feelings, including frustration, annoyance, and anger, in the face of racism and ableism. Your feigned concern for their employability is also obnoxious because a) no one asked for your advice, and b) Lydia has been around the block and had professional positions plenty of times. It's also worth noting that a person's social media is only one aspect of their personality and doesn't mean they don't know how to "clean up nice" if/when they wish to. Also, there is literally no such thing as "sinking to the level of those who bullied and abused you" because Lydia isn't bullying or abusing anyone. Words mean things, and Lydia is, in fact, an renowned expert on the issue of abusive, demeaning, and harmful language. Profanity is none of those thing, however. Perhaps you could go police the people who have bullied and abused Lydia with actual ableist and racist language instead of worrying about if Lydia likes to swear sometimes in response to said ableist and racist language. Otherwise, mind your own damn business and kindly fuck off.


      Someone who isn't afraid to put their name to their words.


    2. It is fair for you to dislike profane language! But I really have to reject your notion that using profanity on one's own personal blog page is equivalent in any way to bullying and abuse of other people.

      It's either "fine to keep doing that," or it's on the same moral level as bullying and abuse; it cannot be both.

      No one is forcing you to read Lydia's blog. There are many blogs I do not read because I do not particularly enjoy how the authors write. We all get to make our own choices about tradeoffs in that department. As to risks in the employment realm, I think we can trust Lydia to judge those for themself. Not all industries have the same expectations or taboos when it comes to use of strong language.

    3. Lydia has already gotten jobs, been active in political and social justice spaces, and earned a reputation as an activist...so, it seems their choice to curse hasn't affected their participation in society. Has Lydia lost opportunities because someone didn't like what they had to say or how they said it? Yeah, probably. That's going to happen to everybody, whether they curse or not.

      I absolutely agree with you that folks need to be careful what they put on the Internet - what goes online stays online...forever! But profanity isn't, by itself, something that's going to make people reject Lydia for employment opportunities. People are more concerned about behaviour than words....

      But, ultimately this boils down to the fact that Lydia gets to choose what they say and how they say it. You've said using profanity is sinking to the level of bullies...maybe it's taking the power back from bullies. Words are powerful tools that change depending on who is using them or how they're being used. And, unless words are being used to directly hurt someone, we all get to use the words we need to use to express ourselves.

      Just offering a different perspective. :)

  4. First, Lydia is a fucking grownup. Grownups choose their own fucking language.

    Second, Lydia is not your fucking friend. Friends can give each other loving advice rooted in an appreciation of values and concerns and steeped in caring. If you were Lydia's friend and knew they were struggling to get work, then it might be appropriate to say "You know how you greeted that recruiter with 'Motherfucking good to meet you, you damned asshole!'? Well...," but you don't have that relationship with them.

    Unsolicited advice from strangers is rarely appreciated.

    Third, you seem to be under the impression that Lydia is fucking unaware of the effects of language and the public nature of the internet. A good look at this blog damned sure suggests otherwise. Your assumption tgus comes off as fucking condescending.

    Your friend,

    A Motherfucking Fan of Curse Words


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