Epidemic of Knowledge
by Carly Jones
Epidemic of Knowledge is a film available on Vimeo with closed captions: https://vimeo.com/121763379
Epidemic of Knowledge
by Carly Jones
Epidemic of Knowledge is a film available on Vimeo with closed captions: https://vimeo.com/121763379
by John Long
Originally posted at http://www.nntlostforwords.com/2016/09/family-ties.html
My grandmother and her partner were all I had as a child. They fed and clothed me, paid the doctor when I was sick, and loved and believed in me when no one else did. They were my deeply disturbed and depressed universe until I finally fled at age 18. I owe them everything.
Frances, my grandmother, was born into a congenitally unhappy family in 1905. Her father was the superintendent of a large cemetery, her mother a talented painter from Boston. They lived with their six children in an old farmhouse wedged between the back of the cemetery and the railroad tracks, far from anyone at the edge of town.
I can’t conceive of what life was like for them. I do know that my great grandfather was a cold and distant man, capable of extreme cruelty. My great grandmother was “unwell,” as people said at the time, and tried to kill herself at least once. There was no help for people like this back then. They were talked about, avoided and left to suffer on their own.
There were four brothers and two sisters. One brother committed suicide not long after he returned from the Great War. Another killed himself a few years later. A third was a drinker who remarried “unwisely” and kicked his teenage son out of the house at his new wife’s insistence. My great aunt was selfish and mean like her father. My grandmother, according to everyone who knew her, never had a happy day her whole life.
Frances was sharp, no-nonsense and opinionated, and could do math calculations almost instantly in her head. She knew lots of people by name but didn’t do small talk, kept to herself and never invited anyone into her home. She got up at exactly 5 AM every day, chain-smoked her way through three packs of unfiltered Kools, worked the crossword puzzle, bullied my “aunt” relentlessly and broke down in hysterical crying if a truck passed our car on the road or dinner was served five minutes late. She never used makeup and wore the same unfashionable 1940s dresses every day. She had two “nervous breakdowns” before she turned 50, the second leaving her in tears at a downtown intersection, unable to even cross the street.
It was painful to see how she suffered. Unfortunately, we suffered right along with her. I don’t have the sort of textural memories other people have. Just random snapshots, mostly anchored by moments of strong emotion. What I remember from my childhood is hiding in the corner by my bed from the emotional storms of my grandmother’s life and, as I grew older, being out on the street on holidays when she completely lost control. I left home the minute my high school graduation ceremony ended and never willingly went back.
I’ve always known that my grandmother and I are alike. We share, to one degree or another, many of the same behaviors and ways of thinking that finally drove me toward an autism diagnosis at age 63. She’s the mirror that has terrified me since early childhood.
She’s also a window into how my atypical neurology has been expressed among our family members over succeeding generations. I have no idea what specifically tortured her parents or siblings. It’s almost as though the building blocks of my autism and associated neurological challenges were expressing themselves to a greater or lessor degree among my family members.
Some families seem to dilute these differences over the years. Happier adults produce happier children and memories fade. Others concentrate these differences as individuals attract mates who also don’t fit in and, together, they pass their challenges along to another generation.
My grandmother Frances married a womanizing, alcoholic bigamist who abandoned her soon after their only child was born. My mother was handed off to her cousin’s family from infancy until she finally was old enough to have three ruined marriages of her own. She spent over 50 years abusing drugs, alcohol and her own children, excusing any excess and behavior that helped her cope with runaway fears and anxieties. Her half brother only differed in the depth of his alcoholism.
How do you unpack all the moving parts of a family like this? I spent decades desperately trying not to be like these people. I’ve been married for 34 years, have two adult sons and survived corporate life long enough to reach retirement. Even in my darkest moments, I was determined to bury my problems and somehow break the pattern of misery that had afflicted my family.
My autism diagnosis has helped. Understanding why I’m me has disrupted the cycle of blaming myself for being different. It also has helped me to stop running away from my past. I now understand more of what was going on with my family and, due to the times, why it was impossible for them to break loose from their unhappiness. I feel their pain accutely, but I don’t blame or fear them anymore.
I have a first cousin on my father’s side who is autistic. There are several other “neurologically different” relatives in this tribe who somehow have escaped labels. They clearly have their own family history to piece together.
All of this explains me in a way my diagnosis never can. Lately, I’ve had a recurring dream of going back home and explaining to my grandmother why she is so different. No one moves or speaks in this dream. Everything is static and emotionally neutral. It comforts me to think she might understand and let go of her own pain.
Compiled by Kit Mead
This is a link compilation of posts about autistic history, whether general autism history or personal autism history, and foundational/influential pieces. Some of these links may contain information that is “dated” or they may have occasional iffy content.
Representation Parallels: Kanner and Bettelheim Compared to the Present Day
by Kit Mead of Paginated Thoughts in 2015 for directed study on the history of I/DD and psychiatric disability.
(If you need an alternate format, please contact firstname.lastname@example.org)
The History of My Autism
by Christy Walk
Originally posted at https://christyautisticwalk.wordpress.com/2016/10/27/the-history-of-my-autism/
Hi, my name is Christy. I am an autistic adult, and I turned 29 years old in August. I am going to tell you my autistic history.
My story opened on October 12, 1987. I became very sick with menengitis. I have heard of many people that died from it. I had to go to the hospital to get some medicine for it. That day, on October 12, 1987, I was diagnosed with autism. I didn’t know I was autistic until I was in sixth grade.
In seventh grade, I went to see a therapist who introduced me to Donna Williams’ books. She read to me pages of a book called Nobody Nowhere. I was really fascinated with that book. I really liked it and I want to get it one day. I was intrigued by Donna’s story, and loved learning about her. I have seen her brilliant artwork and read her awesome poetry. She is a really awesome author, poet and artist.
In high school, I participated in Special Education classes for three and a half years and went on the disability school bus. I really enjoyed going to restaurants and swimming at Aquabilities. The worst part about it was the way my Special Ed teachers acted towards me. I hated that they rolled their eyes at me and yelled at me everytime I made a mistake.
I attended speech class every year as a student of my school that I went to. I usually attended speech class alone, with a friend, or with my Special Ed classmates. I attended IEP meetings in middle and high school. In speech class I was scolded for being late which I didn’t like at all. I was not happy about that because I don’t like being scolded in the first place.
My mom signed me up for SSI and got me health insurance through Gateway in 2005. I got denied several times for health insurance, but then Gateway accepted me. I’m glad that they accepted me, because none of the others really wanted to bother anyway.
In 2006, I graduated from high school. I was really glad to get out of there because I was always so tired after school, that I fell asleep in my bedroom. I lived with my grandmother from then at the time of her death in 2011. My grandmother and I used to go on trips, eat out at restaurants like O’Grady’s and Route 61 Diner (my personal favorite), and shopping at Big Lots. In 2010, she and I moved back to my hometown. I liked where she and I used to live because the pine smell was always in the house. It always smelled like pine whenever I was there. When she went into the hospital in 2011, I went to my mom and stepdad’s house to live there.
In 2012, I joined the choir at Grace Bible Fellowship Church, and it was a lot of fun the first year that I was in it. I have been attending GBFC since 2010, and it’s such a good church. The pastor is accepting of me, and so are my fellow choir members and fellow members of my congregation. They are a great group of people and I love them dearly.
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:
On the other hand, these concepts can hurt us, and that’s where they become dangerous. This can mean:
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’.
Prompts for Autistic History Month
Here are some prompts to get you started if you haven’t already! It’s not too late to submit! Submissions close November 29 at 11:59 PM U.S. Eastern Standard Time.