Random autism stuff

This page is a continual work-in-progress dump of whatever I've been thinking about that is autism-related, but does not belong on another page. The writing style will be more candid and complicated than on the other pages.

This section is, by necessity, quite personal and opinionated; and I'm getting tired of adding a caveat to every sentence I make, so I'm just going to caveat the whole thing at the beginning: this is my experience.

Autism discovery

For a video art project in my first semester of undergrad, my class was divided into groups and told to make candid footage. We - myself, and three other freshies - trekked to the campus dining hall with heavy cameras and tripods. We claimed a table, set up the equipment, sat down, and talked. I can't remember what we discussed; probably how bad the food was, whatever clubs we were thinking of joining, or anything else on a bright-eyed freshman's mind after the excitement of the first week wore off.

What I do remember was looking at the footage afterward. I was in my best blouse, skirt, and makeup. I was gregariously waving my hands, smiling, and laughing. I was surrounded by smiling people, too. I looked normal - so natural and energetic and ordinary that I teared up. Before then, I had felt vaguely abnormal. In casual conversations with no clear structure, and especially in group conversations, I felt lost. Detached from my own voice and body. I'd try to smile at the right times, laugh when I recognized a joke, and nod my head to show I was paying attention. But it was like I was watching the social interaction on a distant TV while I was trapped inside my own head with no way to change the channel. (This was before I knew what autism was, or suspected I may be autistic.)

What made me excited was the idea that I could be - and feel - normal. When people told me in middle school that I was melodramatic, and not as different, unique, and troubled as I felt I was, maybe they were right. I internalized a strong desire to strive for normalcy, affability, likeability. Not because it would be an advantage in life. Just because normal equalled good.

The five years between then and my "autism discovery", as I called it, and my later diagnosis weren't irrelevant; but they were more of the same - desperately trying to do normal things at the normal times. (For my autistic readers, forgive me for the metaphors.) It felt like I was trying to find the beat of a song I couldn't hear. I kept adjusting, arbitrarily, my social actions and affect as positive and negative feedback came in. Social successes, as I interpreted them, reinforced the good feelings that pretending to be "normal" gave me. I even took pride in my good social rhythm. Through trial and error, I had become a "conversationalist".

At the same time, I noticed concerning patterns. People would leave my life quickly, quietly, with no good explanation. Many interations I classified as "good" didn't lead to becoming friends, or even acquaintances. I noticed I was being ostracised again, just like in grade school, when I was sharply aware that something set me apart in a bad way. But I was no closer to knowing what that was. And unlike in grade school, my peers were far less willing to explain to me what, if anything, I was doing wrong.

Then, my therapist mentioned Asperger's (the name for high-functioning autism that is no longer in clinical use). I remembered my partner's roommate asking if I had looked into autism. I had a tentative lead.

Then I started reading.

First, it was Fern Brady's memoir Strong Female Character. Reading it felt like nothing I had felt before. I had found it. Not normalcy, of course. But a reason for why I have never, and would never, feel normal. Autism. The word reverberated in me, and I was a little afraid. It's a permanent state of being - a real disability. One that makes life incredibly difficult. One that could explain why people kept looking at me, confused, or telling me I'm not a good person, or simply leaving. It may mean that I'd need support beyond what I thought I'd need for the rest of my life. But I was still happy to have found it, because the power of the word "autistic" to me was that it justified my very existence.

14 July 2023. Messages to my partner. Transcript:
"I finished the autism book
I don't think I've had a theory of life that makes this much sense
Like, multiple times per chapter I hit a sentence that sent me into a tailspin
and subsequently multiple examples, like I do that! or I did that as a kid; or I wonder the same thing
I'm so excited (?) I can't breathe
Also like immediately I don't feel suicidal
well, I know not to trust that
But it's so amazing that things make sense, and that there are some people willing to understand and help"

I kept reading. Next came The Unwritten Rules of Social Relationships by Dr. Temple Grandin, a well-known advocate for both autistic people and animal rights; and Sean Barron. This was the textbook on social rules that I desperately needed when I first started struggling in childhood. It laid out for me what I was missing, what I had wrongly assumed, and even what I had somehow gotten right, just by guessing based on people's reactions to what I'd say and do.

I kept reading. More about social rules. More about how autistic people were treated in the past (alarmingly poorly). And more about masking. Autistic masking, loosely defined, is the ways that autistic people pretend not to be autistic for our safety and social success. I'm not elaborating more on masking yet, because I don't even know what it is - I just know that I'm not as good at maintaining a mask as I thought I was.

Now comes the question that plagues everyone in their twenties, but especially masking autistic people: who am I? Am I the person I feel I am? If I were to write down the essence of who I think I am, is that me?

Or am I the mask? Am I the person I'm presenting to the world? Are we like trees falling in the forest, meaningless except by how we are observed?

Who was that girl in the video project, then? The one in the nice clothes, with the pleasant smile, surrounded by happy peers. The person who looks non-autistic. The person I can hardly identify with.

As of writing this (28 June 2024), I'm in the process of retreating from everyone but the people I hold very close - the friends and family who do something beyond tolerating me. I'm actively trying to be more autistic, too, to see how I settle into this aspect of my identity. I already feel far more relaxed and comfortable than I was when I was obsessed with simultaneously being all the ways I could be "normal". Of course it was impossible. I'm not normal.

I'm autistic. And I'm myself.

Autism and gender

Among the autistic people I talk to, there seems to be a general shared disdain for unspoken gender roles, just like any social rules that we struggle and fail to notice, understand, and live up to.

I'm assigned as female, a cis woman, bi-/pansexual, greyromantic, and only a little feminine. (As an aside, I think this is the first time I've typed all that out!) Autistic people, like anyone who lives in a place in which they are free to be who they are, can be any combination of things in these categories. For example, someone can be:

- intersex, raised as a man, gay, aromantic, and moderately masculine; or
- assigned as male, nonbinary, asexual, heteroromantic, and not masculine or feminine; or
- assigned as male, a cis man, heterosexual, heteroromantic, and very masculine

or anything else. I don't find any of these categories to be binary, eternal, or even on a linear spectrum. Sure, that makes identity confusing, but chaos is fun.

There can be, however, a lot of comfort in clear, explicit gender roles for autistic people - ways in which we can feel secure in our own identities, and control how other people see us. It really just comes down to personal preference.

A term that appears sometimes is "autigender" to describe an autistic person's relationship to our gender identity. What autigender is not is the idea that autism is your gender, or that identifying as autigender means you are trans, or that identifying as autigender means you are an obnoxious and self-obsessed person. (Seeing virulent arguments about these points is why I have deleted most of my social media accounts.)

Autigender seems to refer to a few distinct ideas:

- That autism, and the lack of awareness and adherence to social rules, leads to confusion about gender identity

- That gender is indefinable and transient, and it is best to identify gender as someone's personal experience of it, and in autistic people, autism is a part of that experience

- That an autistic person can feel secure in their gender identity (or agender identity), but that being autistic will always influence how they see their gender

There does seem to be an agreement that there is no "typical autistic gender experience". I also believe that autistic people experience gender in myriad ways, and that labels - while helpful for individuals and smaller communities among the people who call ourselves autistic - are not to be applied to autistic people in general.

The double rainbow

Autistic people who also experience gender, sexuality, and romanticism in different ways can be said to "fall under the double rainbow", referring to the common symbolism of a rainbow for both autistic and LGBTQIA+ (here, referred to as queer) people. Autistic people can have specific difficulties with the ambiguous and ever-changing labels of gender, sexuality, and romanticism - or we can be drawn to the labels, definitions, lists, and people who identify as queer in some way. Again, it depends on personal preference, and it is impossible to generalize for all autistic people.

My identifications as being autistic and queer have been two separate, but parallel, factors in my life. The differences in my own life have been related to "coming out", a process that both late-diagnosed autistic and queer people can do with their families, friends, employers, and other people and communities.

Being late-diagnosed autistic, I have had to "come out" to people who knew me intimately before and after my diagnosis. For me, these have been conversations, sometimes over food; and most so far have gone more or less alright. I remember people being mildly surprised, saying they had suspected something was "going on", though they didn't know it was autism. They sometimes have said things like, "I didn't think you were autistic, because you seem to be empathetic..." but they allowed me to correct and clarify these things. They let me talk about what autism is for me, and how different it can look in different people. They let me talk about how much I was struggling to understand what I discovered were "basic" social conventions. They accepted that I am still a person, even if I am also an autistic person. And they let me know that they were here for me, both for emotional and practical concerns. Positive coming-out experiences like these make me feel like I've surrounded myself with good people.

I have had a few disastrous autistic comings-out as well, but I'm not inclined to discuss them in public. Even if I still quite resent how I was treated, I'm trying not to hold it against any individual, since their biases and poor treatment probably came from their ignorance.

As for being bi-/pansexual and romantic; I never felt like I had to come out as these things. My serious, public relationships so far have been hetero, more or less coincidentally; though it is a small sample size (I don't exactly get around!). Also, I've not felt that my sexuality is relevant to anyone but my current partner and close friends. Finally, it has been obvious to my partner and close friends that I am not hetero; so obvious that none of us felt like I could come out at all, since I was already out.

Both my autistic coming out experiences, and my queer coming out non-experiences, have been generally very fortunate, and I understand that many people have a much more difficult time when coming out. Being both autistic and queer can make life very complicated.

"Gendered autism"

I put "female autism" in quotes because I don't support that theory. (Here, I'm defining "female autism" as the idea that people assigned female at birth have a different "type" of autism as a rule.) Nor do I support the theory that autism is caused by an "extreme male brain" that prioritizes systematizing more than empathy.

In my experience, I don't find empathy particularly female or systematizing particularly male - there may or may not be some evolutionary theory about hunting and gathering that certain theorists can claim explains a perceived difference in empathy and systematizing between males and females. More studies will have to be done in order to answer the question of whether the evidence for "extreme male brain" theory is, in fact, better explained by scientific research's general bias towards college-educated people in the fields of science, technology, engineering, and mathematics (STEM), a category that, if autistic, is usually best described as high-functioning, systematizing, and frequently male.

Our collective understanding of gender is becoming more nuanced and complicated. In a parallel, our understanding of the autism spectrum is constantly changing and becoming more inclusive, I hope. I don't find it useful to think of either them as clear and linear issues.

How gender affects autism seems to be through socialization. This depends on, among other factors, ethnicity, religion, socioeconomic status, and parental whim. I was socialized as a white (here, meaning I was surrounded by European-origin white Americans), Catholic female. I went to a quite restrictive all-girls' school, where gender binary (and heterosexual normativity) were explicit and hard rules. I was seen as more of a "young lady" than a girl. I crossed my legs when I sat; fidgeting was not permitted. I learned how to set the dinner table (forks on the left). I learned how to support my future husband. I learned how to raise my future children. If I had problems, I was told to trust a priest. If I had to cry, I could take it to the bathroom. I was taught to thank God for both the blessings and the hardships in my life.

I chafed against the restrictions, like any preteen, and quickly outgrew the conservatism and religious beliefs by high school; but I think the explicit rules helped me have an anchor for my autistic self as my body, friendships, and family relationships all changed. I was able to have routines and regularity. I was able to feel secure in my female place in society. Rejecting this has been a long and difficult process, even though I still believe it is the right thing to do for the person I want to be.

Explicitly female scripts have helped me endure social scenarios that I do not otherwise understand. For social interactions, I could call upon the words and smiles lent to me by my mother, the nuns who taught me, and the housewives from sitcoms and commericals. These are the niceties that communicate noverbally that I will be submissive and amenable - I understand that now, but it felt like guesswork when I was younger. I only noticed that if I modulated my voice, and copied what people called "cheery", "feminine", and "cute", I got what I wanted slightly faster.

Not even these methods are perfect. One of the things I'd do was copy too many mannerisms. I'd end up feeling I was turning into a certain character, like Deanna Troi from Star Trek: The Next Generation, at the expense of myself. This became a problem for other people, too, when my high school role models (at that point, any gender) spoke in foreign accents. People would ask me if I were British - and I wouldn't help myself by clarifying that I was watching the Irish TV presenter Dara O'Briain, actually, for multiple hours per day, and I enjoyed the ways he used vowels and moved his head. (The response these people were looking for, I think, was for me to recognize my own ridiculousness. Of course, for me, borrowing sounds from TV presenters was quite normal and not ridiculous at all.)

How I looked to other people at that point in my life is still a mystery to me, but I suspect people felt it was uncanny. I'd switch between very formal and very informal speech (this happened when I borrowed from different sources and used them in the same conversation, like when I'd watch a Cats does Countdown episode with both Susie Dent, a lexicographer, and Danny Dyer, a London actor who plays "hard men", and copy them both). To me, formal and informal were equivalent modes of speaking, if they both got people to listen to me.

Similarly, I'd borrow elements of over-familiarity from panel and game show hosts, like broad smiles, laughing at everything that was said, and even some physical contact like light shoulder and back slaps. I was never comfortable with any of this - none of it felt like me, just the person I was pretending to be. Instead of femininity, which I realized I was no good at, this was my attempt at copying authority - specifically, a type of friendliness that got people laughing and joking, but also controlled the conversation topics. To me, these were indicators of social success. Now, I wonder how many of those laughs were directed at me.

I lacked a sense of what I now define as "peer exchange" - an attention to, and adaptation of, feedback from the people with whom I was attempting to interact as equals. This was caused by two problems on my part: a lack of perception of any complicated social dynamics; and also an adherence to "being my own person", which led me to believe that adapting advice from other people would compromise my own individuality. Both of these have somewhat improved, but the first problem is still especially influential in the social problems I encounter.

Knowing how other people see me requires an understanding of gender roles - regardless of whether I like it or am aware of it, many people consider me feminine. And femininity, for each person and for certain groups of people, is different. It feels too complicated for me to work out, but I keep trying, because for some reason I am attracted to impossible tasks.

Autism and love

This section will be more about my experience of love than autism, just because I'm not sure what is influencing what.

I consider myself greyromantic - a word that I learned recently means that one feels romantic attraction in different ways than others, close to the concept of aromanticism (a lack of any romantic attractions).

Love, for me, is logic more than emotion. That isn't to say I'm purely logical at the expense of emotion - logic and emotion are not mutually exclusive. Instead, the way I experience love is through reason. I have pretty clear reasons why I love someone, which I can ennumerate if given the time. And if those reasons change or fade away, my love changes or fades away too. I go through the same pattern in both romantic and platonic relationships; and recently, I've been wondering if I understand or feel romantic attraction at all.

Why do I love the people I love, then? A lot of the reason is transactional. There's a taboo against transactional relationships being considered the same as close, emotional relationships. I've heard that people think it's like falling in love with your prostitute. But for me, transactions mean something - a mutual commitment to equity. If a close friend helps me, I help them back, not merely because I feel like I owe them - but because I recognize that their willingness to help me symbolizes something greater for both of us. It means that we are willing to recognize when the other needs assistance, and that we care enough to do something about it. We don't have to be worth exactly $12.39 for Tuesday's lunch to each other - but we do have to be worth a loosely equivalent amount.

A transactional relationship is built on expectations. High expectations - of how much I was worth to someone else - were a reason that many of my early relationships fell apart. Expectations that are too low, however, can lead me to make friends with people who are unhealthy for me.

Another reason I love the people whom I love is that I respect them. I am attracted to people who are interesting - who have multiple niche, strong interests; and who try hard to do things they find difficult, even if they fail. My respect for other people, while not immutable, is very tenacious.

I also love the people I love because they're different. Love, for many other people, seems to be based on similarities - whether two people are very similar, or only a little similar, they seem to emphasize those similarities as reasons they are capable of showing love for each other. Instead, I tend to disagree often with the people whom I love. A relationship that has challenges that are eventually overcome is a stronger one, in my opinion.

I like someone who takes care of themselves within their ability. Related to that idea is that I like people who value themselves. I think this is related to a sense of security - I want security in my relationships, and it's hard to have that when I am concerned that someone is living irresponsibly.

Last on this list is that I love people for whom I feel an attraction. Besides the above reasons, this attraction can be physical, or otherwise aesthetic. Either way, it feels the same in romantic and platonic contexts.

As a summary: love, for me, is flexible and conditional, and it also When it is typed out, it sounds very complicated, but this model of love makes way more sense to me than any definition I've seen of romantic love as the majority experience it

Despite all this, I still have an exclusive relationship that I define as primarily romantic. omantic love - pattern Love and hate are mutually exclusive for me, since I classify hate as unhealthy, and love for me cannot be a bad thing. "Frenemies" (as an aside, I hate portmanteaus) do not exist for me. they seem like a waste of time. However, I have heard that other people can exist with conflicting emotions

Platonic and romantic love, often separated for other people, seem to be more or less the same for me

Alexithymia is the reason I'm writing about love in the autism section of my website, and not anywhere else.

What do loving relationships look like for me, then? Mutual relationships with clear, consistent, continued communication. still emotional, occasionally overwhelmingly so, but ultimately guided by reason, statements, etc. that include emotion, but not at the expense of anything else

"Normal" love definition should be expanded (ideally not pathologized, since it isn't harming me or anyone else) How do I show love?

Autism and committed relationships

Adopted and autistic

I was transracially, transnationally adopted at 8 months old, from China, at the end of the 20th century.

For anyone who knows about adoption from China at this time, there's a lot more to that story - I escaped sex-selective abortion, female infanticide, neglect, abandonment, a secret life as an undocumented illegal, forced marriage, living my whole life in an orphanage, and being autistic in China. I may not have escaped abduction from my birth family and trafficking, but I'll probably never know.

Besides female children, disabled people are another population that often ends up in Chinese orphanages. These include physical disabilities, external and internal; and developmental disabilities that are immediately obvious.

I've wondered if my birth parents noticed I was autistic, somehow, as a newborn, if I didn't look at them, or if I cried when they held me. Sometime I wonder if they struggled at all to give me up. But I think that being female during the One Child Policy period is a more influential factor in why I was adopted.

I don't find it very productive to ask myself questions about my very early life that I will never know the answer to. But I am very interested in the newly-adopted Chinese children, post-One Child Policy, who are often disabled in some way. Many of the people in this wave are autistic. They may have been adopted as older children or teens. If you're autistic and adopted, especially transracially or transnationally, send me an email. You can share any information you're comfortable with. If not all of these questions apply to you, or if none apply but you just want to talk about being adopted, disabled, or autistic, feel free to send an email anyway.

I'm specifically interested in the following questions:

- Are you diagnosed or suspected autistic?

- Are you, or do you identify as, disabled in other ways? Were you born with an obvious physical feature like cleft palate, for which you later received surgery?

- At what age were you adopted?

- Did your adoptive parents know or suspect that you're autistic before adopting you?

- From which country are you adopted? In which country is your adoptive family?

- In which year or decade were you adopted?

- Were you adopted by yourself, or with siblings?

- What is the religious identity of your adoptive family?

- Have you spent time in foster care, or with multiple adoptive families?

- Do you know anyone of your birth family?

- Have you known you were adopted from a young age, or did you find out as an older child or adult?

- How else has being autistic and/or transnationally or transracially adopted contributed to your sense of self, if at all? Is being autistic and/or adopted a "big deal"?

If I end up using what you've sent me in any discussion or writing, I will ask permission first, and I will not use any identifying information. If you'd rather I not, I will respect that.

You can feel free to ask me questions, too! Adopted people end up scattered, by definition. I see transnational or transracial adoption as a diaspora - though we often don't retain our birth nation's cultures in any meaningful sense. I've found that I have very little in common with the adopted people I know, just because "being adopted" isn't a strong enough similarity for me to feel any more connected to them than to any other random person. But I am still interested in learning about adoption from different perspectives. And part of me wonders if there are other people out there with significantly similar lives, with whom I may feel a stronger sense of community.

Armchair diagnoses

Do I speculate that various fictional and historical characters are autistic? No, I find it to be irresponsible.

I do understand the impulse, though, to create a positive autism "story" - the idea that autism existed, and was secretly celebrated, in the past; the idea that autistic people weren't always doomed to abusive institutions and death. And there probably were "undercover autistics" in the past, like the "high-functioning" people today, who are able to mask and fit in to a non-accomodating society. I also think that people looking for autism in history are seeking to legitimize it, especially in reaction to people who believe that autism is a fad, or that everyone has it, or that it's only a way of seeking attention.

But the key, I think, is in referring to these historical or fictional people as "characters". After someone famous dies, they become something like a legend. Even if nothing is made up retrospectively about them, their facts of life are reduced into a checklist rather than as an entire way of life, like a living human. And fictional people are not people. I think there's a reason why autism assessments are long - autism is lifelong, and it impacts your whole life, both in obvious ways and in non-obvious ways. And autism assessments are (or should ideally be) done by professionals who are used to looking for the evidence. There were no such people in the days before Aspergers and autism existed as diagnoses, so there are no reliable contemporary accounts for historical autistic people, either.

Autism existed before there was a name for it. These autistic people, regardless of what functioning level they'd be described as today, suffered. But I think they have to remain nameless, to encourage people to focus on the autistic people of today and of the future - these are the autistic people that we can meaningfully help.

Empathy and morality

Lack of empathy scary. Empathy is not necessary to develop moral compass (?) low empathy people are like...

Types of empathy

Moral compass can be borrowed from someone, developed by research, implemented, changed due to feedback because it is right, not/less because it is empathetic

Some autistic people's relationships to others are best described with ToM deficit; some with double-empathy problem - for some, empathy varies; can be stronger with certain people, with animals, with fictional characters. Can vary based on brain functioning (harder to be empathetic when tired). Allistic empathy probably isn't monolithic, either (can also vary because of certain factors)

I think I'm a moderately empathetic person due to needing other people's perspectives told to me, in words. or obvious cues like crying Low empathy not the same as low emotion

Autism and encouragement

I've been told I'm capable of anything, or at least many things. I don't know if that's what adults say to children in general, or only to the ones like I was back then - studious, high-achieving, yet quiet and isolated, with the beginnings of what would become crippling anxiety and self-doubt.

Sometimes I need to be reminded that I'm capable of doing things. But sometimes, I need to be told what I'm not capable of. Sometimes, I need to be reminded that I really suck at remembering to eat, or filling out forms, or understanding relationships. I was told I don't have limits, but I have clear and repeated evidence for my limitations. What is harming me is not my lack of self-belief, but my lack of self-worth - those are two very different ideas.

Autism and common sense

Autism and family

This is a broad topic, so I think I'll list things out before I try to write them into a cohesive body. (Here, I'm using "family" broadly to include biological families, adopted families, and constructed families - people whom a person can gather through their lives, consciously or unconsciously, that basically have the same connection that another type of family may have for that person or for someone else.)

- For autistic people to have a supportive family is incredibly important - this is family that is accomodating, fair, communicative, and supportive

- Not only do autistic people need accomodations; but their families do, too - our support people are very involved with our wellbeing

- Families of autistic people get a lot of crap in the public eye if they share basically any opinion, whether that be from autistic people, from other family members, or from people who have no stake in the issue but feel emboldened by their place at the keyboard. Quite a lot of these family members are trying what they believe to be their best

- Unproductive mindsets for a family to have are: being dismissive or in denial; emphasizing hard work/effort at the cost of understanding how hard work by autistic people sometimes doesn't lead to results, especially given the environmental pressures we face; believing they must do everything for the autistic person, including speaking for them, in a way that the autistic person's support needs don't require (or believing they must do nothing to let the autistic person "toughen up" or adapt to neglect); believing it is good and inspirational when the autistic person exists and acts in a way that aligns with unrealistic neurotypical desires, or otherwise is not inconvenient; family members who refuse to release the expectations they had for their autistic relative (or who blame the autistic person for failing to meet their ideals or otherwise causing self-sacrifice - this happens with late-diagnosed people, and we are unfortunately old enough to comprehend it)

- Family members especially should not exploit their autistic relatives

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