Someone decided this was going to be Autistic History Month. I had another contribution I was going to write. In fact, it’s already almost written. But I ended up writing this instead. At first glance, it seems to be specific to autistic people. But while it applies to autistic people, it also applies equally well to a lot of other disabled people, so it’s not necessary to ignore it because you’re not autistic.
There’s something the autistic community1 has lost. And I think it’s high time we got it back, possibly in an improved form. It’s the concept of cousins.
It started with a man who had hydrocephalus. I met him once, after the events I’m going to recount were already in the distant past. But I’m leaving his name out in the interests of privacy, given that when he wrote about these events in Our Voice2 he used a pseudonym. Anyway, I think he came to the autism community, and later the autistic community, because he was a professional whose job involved autistic people somehow. But I don’t know for certain.
What I do know, is once he discovered the autistic community, he stuck around. While he always made it clear that he wasn’t autistic himself, he found that he identified with autistic people a good deal due to his hydrocephalus. Autistic people, likewise, found that they could identify with him.
At one point, there was an autism conference where a lot of autistic people attended. Including Kathy Grant (now Xenia Grant), one of the co-founders of Autism Network International. Jim Sinclair, another ANI co-founder, was there as well, along with several other ANI members.
To understand the tone that all of this took place in, it’s best to understand a bit of Xenia’s personality. She is possibly the friendliest person I’ve ever met. She’s also one of the most unapologetically autistic-looking people I’ve ever met: She looks autistic (in physical actions, in conversational topics, in what parts of the world she reacts to and how), she knows she looks autistic, and she has no problem with this at all. And she has such an infectious exuberance and enthusiasm for life that it’s hard not to be cheerful when she’s around. All this adds up to the fact that I’ve never met or heard of anyone who didn’t like her.3
So anyway, I’ll let Jim Sinclair tell the story, since xe was there and I was not. This is excerpted from xyr long but important article, Autism Network International: The Development of a Community and its Culture:
Another development during the 1993 conference was the recognition of a new segment of the ANI community, and the adoption of a new term to refer to it. One of the people who had been corresponding with ANI members online, and was attending this conference to meet with us in person for the first time, was not autistic. He had hydrocephalus, another congenital neurological abnormality. In our online discussions he had been noticing many similarities between his experiences and characteristics as a person with hydrocephalus, and the experiences and characteristics of autistic people. At the conference he met Kathy, who was not online at the time and did not know who he was. He introduced himself to her, explaining that he was interested in exploring similarities between himself and autistic people. He briefly summarized the effects of hydrocephalus in his life. Kathy considered this for a moment, and then warmly exclaimed “Cousin!” (Cousins, 1993). From that time on, the term “cousin” has been used within ANI to refer to a non-autistic person who has some other significant social and communication abnormalities that render him or her significantly “autistic-like.” The broader term “AC,” meaning “autistics and cousins,” emerged soon afterward.
The term AC is further documented on Jim Sinclair’s personal website:
Cousin refers to a person who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics. Some conditions that may lead to cousinhood include Tourette syndrome, hydrocephalus, Williams syndrome, and some learning disabilities.
AC stands for “autistic and/or cousin.” “AC” and “cousin” are sociological terms describing status within the ANI community, rather than clinical diagnostic terms.
[from A Note About Language and Abbreviations Used On This Site by Jim Sinclair]
As I’ve noted many times before, the online autistic community often has a very short memory. I can remember when ‘cousin’ was a well-known term and used widely, even outside of ANI-related circles. And then, gradually, its use died out and a lot of people seemed to forget — or not know in the first place — it had ever existed.
I only ever saw one criticism of ‘cousin’ that made sense to me. And that was more about the way people used the idea, rather than the idea itself. This was, that people used ‘cousin’ in a way that made it sound like autism was the one central way to be neurodivergent, and everything else was judged by whether it was similar to autism or not.
If the ‘cousin’ idea is brought back, I hope that it won’t be seen as exclusive to autism. It can be used for practically any form of neurodivergence or similar experience of the world.
For instance, I experience delirium pretty regularly if I get sick enough. This is because, as far as anyone knows anyway, delirium leads to brain damage, which leads to further susceptibility to delirium. This is especially true for severe or prolonged delirium like the type I’ve experienced at times. Delirium is a set of cognitive and perceptual changes brought on by a physical illness or injury of some kind. The part about being directly linked to a physical problem is important. The cognitive problems can range from mild confusion or disorientation, all the way to hallucinations, delusions, and large chunks of time lost altogether.
On a purely medical level, there are important differences between delirium and psychosis. Some of those differences are subtle, and some are pretty dramatic. Failing to distinguish them medically, could lead to death in extreme cases. But experientially? When I talk to people who have experienced psychosis, their experiences are closer to my experiences of delirium than any other group of people I’ve met. So you could say delirium is a cousin of psychosis — the differences may be important on a medical level, but when it comes to understanding my experiences and how to deal with them, people with psychosis are the most likely to understand.
I’m going to quote one part of what Jim Sinclair said above in xyr definitions of AC and cousin, again, just to emphasize it:
“AC” and “cousin” are sociological terms describing status within the ANI community, rather than clinical diagnostic terms.
That means the important part of cousinhood isn’t what your diagnosis is. It’s whose experiences you identify with and gain meaning from. I’m not sure it’s a coincidence that at the same time that ‘cousin’ started disappearing as a concept, large parts of the autistic community became less focused on being a community of people who support each other, and more focused on being as exclusionary as they could get away with. To the point where I’ve run into people who worry that they’re not ‘autistic enough’ to flap their hands when they’re happy, and that flapping their hands would be the equivalent of cultural appropriation. Because people have told them that, or said things like that in their presence, enough that they’ve completely internalized it. As if autistic people have some kind of monopoly on hand-flapping.
I’ve said this many times before, about concepts like autism itself: These concepts are only useful inasfar as they help people. That can mean:
- helping you understand yourself better
- helping you understand other people better
- helping you meet people who are more likely to resemble you in ways that are important
- helping you obtain services you need in order to survive, get a job, get an education, get legal help if you’re discriminated against or targeted for hate crimes, etc.
- helping you advocate for yourself if you run into accessibility problems
- helping you learn skills that you would otherwise find too difficult to learn, as well as skills you may never have heard of without meeting other people like yourself
- helping you in all kinds of other ways, the point being, these are good things in your life, rather than destructive things in your life
On the other hand, these concepts can hurt us, and that’s where they become dangerous. This can mean:
- people becoming snobbish about being more autistic, or less autistic, than other autistic people
- people defining the boundaries of who counts as autistic and who doesn’t, for reasons that have entirely to do with their own egos and insecurities
- people trying to put limits on what you are allowed to be able to accomplish in your lifetime, and still be counted as autistic
- people excluding you for no other reason than that you’re autistic
- people treating you as subhuman, an unperson, because you’re autistic
- not believing yourself to be fully a person, because you’re autistic
- limiting your own ideas of what you’re capable of, because you’re autistic
- forcing yourself, or being forced by others, into fitting certain stereotypes, because you’re autistic
- feeling like you have to pretend that certain stereotypes don’t apply to you, even if they do, because you’re autistic and you feel like you “shouldn’t” be too stereotypical
- feeling like you have to defer to professionals who have studied people like you, in describing your own life, because clearly they know more about autism than you do, which means clearly they know more about you than you do
- harming you in all kinds of other ways, the point being, these are destructive things in your life, rather than good things in your life
And you can substitute nearly any other category of person in place of autistic up there. The basic pattern works the same: Pretty much any label that defines a group of people, has the possibility to do good and the possibility to do harm. The only times there’s any point to using the label in question, is when it’s doing something good for you or other people.
Bringing people together with words like ‘cousin’ allows people to identify with autistic people, without putting pressure on them to figure out instantly whether they are actually autistic or not. It allows people to acknowledge that most skills and difficulties autistic people experience are not totally unique to autistic people. It allows people to acknowledge the vast grey area that is both outside of standard definitions of autism, and outside of neurotypical, but that resembles autism in important ways. It allows people to acknowledge that the boundary between autistic and nonautistic is fuzzy at best. And it does all that while contributing to people understanding more about themselves and each other, and bringing people together into friendships, communities, and other relationships they might not otherwise have.
So I really believe that it would not only be a good thing to remember the word ‘cousin’ and what it used to mean, but to revive it and expand its use for more than just autistic people. It allows for so much more flexibility than people are currently given about a lot of different identity groups, and that’s important. So if you like the idea of cousins, by all means, use it and adapt it as much as you want, for whatever groups of people in your own life you think it would best apply to.
1 For the purposes of this article, ‘the autistic community’ refers to relatively mainstream online self-advocacy and sociial communities made up mostly of autistic people. There’s a lot of different autistic communities out there, both recognized and unrecognized, online and offline.
2 The newsletter of Autism Network International.
3 Actually, come to think of it, I’ve heard of exactly one person who didn’t like her. It was a self-loathing person with autism who said they were embarrassed by her. That’s an unfortunate but common reaction that those of us who are visibly “different” get from other people who want to forget their own difference, and who find that we remind them too much of parts of themselves they’d rather forget. But for someone as social as Xenia, to have heard of only one person who disliked her for her unusual mannerisms and reactions to the world is a testament to her extremely friendly personality. Ordinarily, if I mention Xenia to anyone who’s met her, they sort of light up inside just remembering her. I don’t think it’s coincidence that someone that friendly is the one who thought up the concept of a ‘cousin’.
Reblogged this on Rambling Justice and commented:
Post by Mel Baggs. I’m reblogging because, as a person with attention deficit disorder, I often relate to some of the experiences that autistic people have with executive functioning issues (which can be a part of autism as well as a major part of AD(H)D). Mel suggests expanding the concept of “cousins” from autism to other disabilities. In this spirit, you could argue that auditory processing disorder is a kind of “cousin” of deafness in that many aspects of the experience for both disabilities are very similar to each other in that both communities have difficulties understanding what people say when they talk with their mouths. Of course it gets complicated because deafness, aside from being a disability, is ALSO a cultural identification, particularly when used by the signing community and capitalized (“big D” “Deaf”, as opposed to “little d” “deaf”), and for cultural or linguistic identification not every aspect of your experience necessarily has to be perfectly identical.
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Boy, could I relate to this. I am a woman with hydrocephalus who recently lost her autism diagnosis in part due to the hydrocephalus. It’s not like none of my previous diagnosticians knew about that, but oh well. Anyway, that lack of a formal diagnosis got me rejected from a Dutch autistic women’s forum today. As I was processing my hurt feelings, i read your article and felt so validated. I also wrote an article about this concept as it would help me within the autistic comunity on my own blog. I mean, I’m still self-diagnosed as autistic because I at one point had an autism diagnosis, but what if my previous professionals had agreed with my current one that hydrocephalus excludes autism? Then would I not still have had the same experiences, that are very similar to those of people on the autistic spectrum? I would. But by the exclusionary guidelines of many autistic communities, even the ones that allow self-diagnosed autistics, allistics are not welcome.
I like this a lot. Recognise a lot of AS traits in myself, feel very comfortable in company of autistic people, but don’t score quite high enough for diagnosis. Cousinship is nicer than a grey area.
As a person with Tourettes Syndrome, which as a disorder has inherent in it a lot of cousin-like traits with Anxiety, ADHD, OCD, ODD, Autism, etc. that look differently in everyone,I really liked this article and identify with its value. Although I accurately do not have all of the common comorbid diagnoses associated with Tourettes, it’s been super helpful to me to recognize which elements of OCD, SPD, ADHD, etc. may be relevant to my own experience and use information already existing within those communities to better understand and navigate within my self.