Recently it has come to my attention that a number of people actually like the stuff I’m writing. I’m so glad you are getting something out of this. Sometimes I feel like I’m screaming into a roaring wind and lost in the deluge of voices on WordPress. So thank you to those who have told me in recent emails that you appreciate my work. It is truly one of the only sources of self-esteem for me since I lost my job to COVID.
However, I was reading over all my past posts and found some things to be outdated and cringe – particularly when I use the term “Asperger’s” in earlier posts. There are also points where I don’t feel as if I uplifted or centered minority and particularly BIPOC Autistics enough. In my attempts to explain the difficulties of white women in standing up against white supremacy and patriarchy, I was insensitive to the very real damage to minorities that white women perpetuate every day. White women absolutely need to be held very accountable for the harm they do regardless of the reasons.
Therefore, I am going to change past instances of “Asperger’s” as I am disgusted by the history of this term as a human, an Autistic, and a person of Jewish decent. It can be upsetting to readers and I understand why. I am NOT going to change much else about my posts, because I don’t believe in “dirty deleting” my own development and my mistakes.
I am also debating whether to change the name of this blog due to the use of the word “Native.” No one has complained, but I want to be sure. Although I am not using it in a sense of claiming Indigenous American heritage, I should probably not capitalize it as “Native” is an identity that is not mine. So it will be lowercase after this posting. I am still seeking feedback about the appropriateness of this, but I have only found material warning against non-tribal members calling themselves Native in the context of claiming vague Indigenous heritage.
I am also going to be posting some updates about my “gender voyage” where I will be discussing some personal, revealing things but I hope that I can shine a light on the wide variety of gender experiences out there through talking about what I have learned about myself. The most surprising thing about becoming an Autistic advocate and activist is discovering the intersection of queer/trans and neurodivergent identities. Many late-diagnosed Autistics find that as they “unmask” their Autistic selves that they are actually wearing multiple masks in the name of “passing” as normal and not drawing more negative attention to themselves. It’s a whole complicated thing.
I just want to say that I see you all doing your best to hold it together during these dark and anxious times. I am doing my level best as well and writing this blog is one way I stay sane.
Three years ago I was finally clinically recognized as being Autistic. I say finally because I was almost 40 years old and had suspected I was on the spectrum for over 20 years. My entire adult life I had “failed out” of society for reasons I could not then explain. I jumped around from one low-paying job and abusive workplace to another and I could tolerate none for long. I had no references, wealth, and a very crummy, abusive safety net. (Most of which is still true).
I decided that my secondary teacher education and English degree would be sufficient along with my intensive study and life experience in making me an excellent autism educator and speaker. This was true. What I didn’t expect is that although people like me are increasingly in demand at conferences, symposiums, and colleges, the market price for our expertise is exactly zero dollars.
We are never (I’ve checked on it) offered money unless we have gained national attention and that attention usually comes at the behest of those trying to use us as inspiration porn. No Autistic person gets paid unless they are privileged enough to have neurotypical agents or advocates who support them by negotiating for us or giving us funding for mass-market publication and promotion. Unfortunately, this has led to mostly white, verbal, straight, cis, and/or well-supported Autistics gaining visibility while more intersectional voices are completely buried. We hardly ever hear from Trans Autists, Black Autists, multiply-disabled Autists, Autists with criminal records, homeless/impoverished Autists, or Autistic people with many difficult intersections and identities.
And those are the voices which are the most compelling and insightful about exactly what needs to change to help all Autistic people.
This exploitative norm is reinforced with bad-faith arguments like, “But the other guests are speaking for free.” Most other speakers at autism conferences and institutions of higher learning are professionals who use these events to promote themselves, their practices, and their publications/paying work. They are getting advertising out of it at least, although they are still more likely to be offered compensation in money. Autistic advocates often have no other gainful work and public speaking is especially stressful for us. We spend more time in preparation and face a greater risk of not being taken seriously by parents, students, and mental health professionals who attend. We are asked difficult and often triggering questions that we are nonetheless more qualified to answer than non-Autistic “autism experts.”
Another argument is, “But there’s not enough money for us to do that.” Lemme tell you a true story: For several years, venerated and well-endowed Emory University in Atlanta has had a class on autism. Most of the semester, students learn about autism from very outdated and debunked material put out by neurotypical sources and taught by a neurotypical professor. For two of those years that I know of, local Autistic advocates (who are acquaintances of mine) have been asked to come spend a morning educating the class about autism from an Autistic perspective. Neither were offered any compensation even though one advocate was unemployed and going through a terrible divorce and could barely afford housing. (He passed away soon after he educated students there for free).
I talked to both friends about requesting at least a small honorarium for their life experience, trouble, time, and expertise. One was too afraid of losing the gig to ask, and the other was so blown away by even being asked to do this that he didn’t feel right asking for his time and work to be respected. I’m pretty sure Emory could scare up fifty or more dollars to make it worth their efforts.
There is no subsidized/endowed organization that can’t spare some scratch for us if they actually care about minority voices.
Here’s what happens when we do ask for money: We are simply passed over, many times in favor of less intersectional Autists with better supports and less of a sense of what they are worth. Easier to exploit in other words. I’ve been seated on autism conference planning committees where proposals by Autistic speakers who request any amount of money are thrown on the “No FUCKING Way” pile automatically. It was terribly dehumanizing to witness and it showed me what neurotypical professionals really think of us.
“But is this really something as bad as exploitation?” you might ask. Imagine if you will a convention about the Trans Experience in America. You are a Trans activist/advocate/scholar who wants to share what they know. You get to the conference and discover every attendee and speaker is Cis and are considered bigger experts because they have studied the Trans Experience in books which had no input from Trans people at all. You discover that the Cis “expert” speakers are getting some sort of compensation, even if it’s just advertising, but no members of the population being discussed are compensated in any way and neither are you even though your minority status makes employment much more difficult. You yourself have no other source of income.
Is THAT exploitation? I don’t think any LGBTQ allies out there would disagree that it is. In fact, I think they’d be furious and call out that organization in the strongest ways possible. Now imagine if it was a conference on the Black Experience in America and the same situation happened? The organization would lose all funding over it at the very least.
However, I have experienced this exact scenario multiple times and the neurotypical organizers act offended if it’s brought to their attention. There is “abled fragility” in abundance. I have realized too late that I was set up to look like a self-narrating zoo exhibit for no pay even though I was ill with anxiety.
This a common problem in nearly all advocacy, but especially disability advocacy. It is assumed that if we are alive and appear to function that we have adequate employment and support when mostly we do not. It is assumed that somehow the mere exposure will lead to better things for us. This is rarely, if ever, true because exposure doesn’t matter if absolutely everyone thinks they can get away with not paying people like yourself.
And everyone does get away with it. Here is why:
Autistic people are conditioned to feel they are unworthy, inadequate, and burdensome. This makes any kind of superficial recognition or respect seem weightier to us than it actually is. We are expected to be grateful for even being asked what our lives are like. In other words, we are expected to do unpaid work for being treated with the same kind of consideration that regular people automatically receive for their specialized knowledge.
We are considered to be “less expert” on our lived experiences and personal education than those who have not lived it. There is an assumption that we are unreliable witnesses to our own lives because we are mentally/socially inferior.
We have less ability to effectively negotiate and assert ourselves and our needs because we were never taught how to and have a different set of social aptitudes (like hyper-empathy). We were either too sheltered or too neglected to be taught these important self-advoacy and promotion skills.
Organizations use our positive Autistic traits against us; namely, our extreme passion to “get our message out” and make things better for others like ourselves regardless of our own sacrifices and our discomfort for discussing crass subjects like money. We are selfless and it is weaponized against us.
Other people don’t see an issue because we are considered to be medically sick people rather than a culturally oppressed minority (which was also the problem for Trans/Queer people at one time).
At the end of the day, we are considered easy to dupe because we are “inferior” or even subhuman but there are big benefits to organizations for “including” us despite doing so in deeply offensive, tokenizing ways. Many shifts in how we view the labor of oppressed minorities, and especially developmentally disabled people, are going to need to occur before we are valued enough to get paid for our true worth. Unfortunately the best way to accomplish this shift is by giving Autistic advocates, particularly intersectional ones, much more platform and letting us speak at as many events as possible. But the best way to get a good speaker to stop their advocacy is to continually deny any payment – we cannot sustain the work without it.
So, baby steps to humanhood and financial stability I suppose?
Ten years ago at exactly now, I was packing my car for the long drive to Portland, Oregon trying to find a place where my personality was less alienating for me. When I got there, my hosts were terrible, everyone judged me for the same reasons plus my Southern accent, and I was unable to find all the “weird” that Portland claims to keep. I discovered I was too weird for Portland as well and I shouldn’t have watched Dig! so many times.
I came back to the South nine months later in an epic cross-country solo road trip on nearly no sleep while very mentally ill, my terrified cat in the back seat. I moved into my parents’ house again and soon began a tepid relationship with a classical guitarist for a year. We were both on the spectrum, neither of us knew it, and we “coped” with our general dysphoria by drinking a lot.
We broke up and I proceeded to flail around for mental stability. I was 33-34 years old and had failed at every attempt to “adult” my way to respectability despite my intelligence and talent. I was experiencing extreme pain in one of my fingertips and no one believed me about it for the next three years, but I was unable to work for long, fix food for myself, or function at all. Eventually I had three excruciating surgeries to remove a very rare, very debilitating series of tumors with the help of a charity organization. During the chronic pain, I drank even more and acquired a third DUI one summer night.
That night when I was 35 years old changed my life – for the worse in the short run and eventually for the best in spite of what was done to me. I was tied down and tasered by the cops during a mental health crisis and had the next three years of my life utterly destroyed. I became a shut-in while dealing with the tumors and unable to drive.
It’s hard now for me to comprehend how beaten down and subhuman I felt mid-decade.
During all this, I went to community college to get a secretary degree and failed to complete my studies. I received no accommodations although I tried as hard as possible to get help without any concrete diagnosis or disability. I was sexually assaulted a few times during this period. I was trying as hard as possible to make my parents love me and get society to tolerate me by wearing multiple masks which resulted in dissociative identity problems on top of the PTSD.
I was very close to taking my life for real (rather than just fantasizing about it like I had since turning eight years old) when I decided to go off of the ever-changing psychiatric cocktail I had been fed since I was fourteen. It was not easy. It was like tripping for about three months, and not in a pleasant way, while the drugs worked themselves out of my system and I readjusted. I stayed off the booze for the most part.
It finally dawned on me in my new mental clarity that I was not a broken freak or a loser, but rather a remarkable type of person and this culture, this country, is built to quietly dismantle people like me. I didn’t fail out of society; every layer of society had failed to protect me.
And then 2016 happened. And then #MeToo.
And then I was clinically identified as autistic.
The past long three years, for reasons personal and political (because there is no difference), I have made the decision to live openly by not hiding my identity as a neurodivergent person with a lot of unpopular opinions to share. There has been backlash for this in my life from family and the autism industrial complex.
But it was all worth it – even these past three years of constant existential panic and alarm as the world burns and heaves with discontent. There’s nothing like finally having the language and framework for understanding where you fit into the universe, if not humanity. Once I knew I was a non-binary autistic person my purpose snapped into focus and my genuine identity began to solidify.
I began to value myself, take up space, accomplish things, and heal the profound gaslighting of the first 40 years of my life.
Trans pastor and speaker Paula Williams says, “The call to authenticity has all the subtlety of a smoke alarm.” I think the major conflict in the world right now is the battle between authenticity, objectivity, and facts and the forces of greed, illusion, and mass manipulation. There is power (and risk) in authentic perspective, in truth telling, in abandoning language that frames people and events in false terms.
I feel a great awakening of people who refuse to be silenced and destroyed by tired and dangerous social controls and this is most apparent in the new visibility of gender queer and/or neurodiverse people.
2020 will be a year of great upheaval as well as shocking enlightenment.
I am many kinds of weird, but the first label I remember is “bookworm.” My parents discovered I was a really easy kid to mind after I could sit up on my own; just put a big book or catalog in the floor and I would sit for hours turning the pages and staring at them.
I learned speech by intense observation and repeating whole adult-sounding paragraphs cribbed from newscasters and TV commercials. I was initially behind my peers in reading, but went through a mental expansion between first and second grades that suddenly landed me in “gifted and talented” special education. They tested my verbal IQ in second grade. After three questions, the lady switched to the adult version of the test which I also blew away. I went from barely grade level at the beginning of first grade to college level reading by fourth grade. Meanwhile, my physical and social development were stunted and I didn’t feel human.
This is a typical tale of a certain type of atypical child – the hyperlexic who becomes academically gifted but socially isolated. Hyperlexia is “a syndrome characterized by a child’s precocious ability to read. It was initially identified by Norman E. Silberberg and Margaret C. Silberberg (1967), who defined it as the precocious ability to read words without prior training in learning to read, typically before the age of 5. They indicated that children with hyperlexia have a significantly higher word-decoding ability than their reading comprehension levels. Children with hyperlexia also present with an intense fascination for written material at a very early age.” – Wikipedia
Most of the sparse material I found on hyperlexia is dedicated to imposing a system of subtypes with the sole purpose of divorcing it from autism. As the hilariously-named Darold Treffert, MD, puts forth in a lengthy article with no scientific merit, there are three subtypes:
Type I: Regular-ass smart kids who begin reading early but whose peers eventually catch up. “This form of “hyperlexia” is not a disorder; it does not require treatment. These children, usually very bright, go on to have very typical, successful lives.”
Type II: Hyperlexics who exhibit “a savant-like ‘splinter skill’ associated with the autism.” These are the ones who are in trouble, folks. But, first can I say that there’s no reason to call something autistic kids tend to excel in a splinter skill. It’s just a skill that need not be splintered away from the diseased tree that is the pathological autistic child according to Darold. He concedes, “However, the precocious reading ability can itself be a valuable treatment tool for teaching language and social skills and should not be marginalized or disregarded as unimportant or frivolous.” Then Darold shows his true colors by saying, “Unfortunately, as I will point out, some clinicians and other specialists hold that when precocious reading ability is present, and when coupled with comprehension, language and social difficulties, it is always part of an autistic spectrum disorder. I do not subscribe to that view.”
Type III: Early, obsessive readers who show lots of autistic traits, but then eventually “outgrow” the autistic traits which “fade over time.” The Type III description is too amazing to not include in full:
The hyperlexia is coupled with an intense fascination with letters or numbers. Yet in spite of the intense preoccupation and ability with words, there are, correspondingly, significant problems in understanding verbal language. Comprehension of that which is masterfully read is often poor, and thinking is concrete and literal. There is difficulty with, and paucity of, abstract thinking. There may be some behaviors and symptoms commonly associated with autism spectrum disorders as well including echolalia (repeating rather than initiating conversation), pronoun reversals, intense need to keep routines (obsession with sameness), auditory or other sensory hypersensitivity, specific intense fears, strong auditory & visual memory, and selective listening with the appearance of suspected deafness. In this group of children these latter “autistic” traits and behaviors are only “autistic-like” however, mirroring those seen in autistic disorder itself.
But totally not autistic because “in contrast to those in Autistic Disorder, these ‘autistic-like’ symptoms fade over time as the child ‘outgrows’ his or her ‘autism’ as some parents have described that transition. I call this group Hyperlexia III.” Darold the Great wraps up his theory by telling us exactly why it’s necessary:
The purpose of this posting is to describe these different types of hyperlexia and to point out the necessity for careful differential diagnosis among them because of differing treatment and outcome implications, along with alleviating some of the unnecessary distress and worry in parents when a diagnosis of Autistic Disorder is applied prematurely and in error to some children who read early.
And this is from 2011. But drivel like this is still used to perpetuate fear of having a child with a different neurotype. Here’s an example of a Warrior Mom, PhD, nearly begging for a different diagnosis to be created for her hyperlexic child who is actually autistic.
It’s pretty clear that Type III Hyperlexics are also neurodiverse, but this points out how flawed the analysis of clinical blowhards can be, blatant bias against autism aside. Many avid autistic readers are exactly the ones who used reading as a skill to blend in and overachieve so as to be included in society and win love. We learned how to interact with people by reading fiction and reading has been shown to teach better empathy. Apparent lack of cognitive empathy has long been a poor litmus test for autism and reading can help a kid figure out how regular people interact and what they expect.
I used reading and intelligence to learn to mask autistic traits, but the problems, like anxiety and social confusion, never got addressed.
I think it’s impossible for many people to understand that a medical condition can confer both difficulties AND advantages, that a person can see their autism as both disability AND privilege. It’s part of why the whole thing is so weird: Our cognitive profiles have high peaks and some low valleys which is why it is characterized by some as “spiky.” Hard things are easy; easy things are hard.
So can some kids just be really good at reading and not be autistic? Sure thing! But probably not if there is a genuine “intense fascination with written material from a young age.” And not just the words on the pages, but a deep affinity for books as objects of comfort and refuge. I’m that chick that reads at the bar. My house is infected with random stacks of the things. Just seeing them lined up calms me and I go on vacation to famous bookstores.
I know a young autistic boy who is minimally verbal but talking more every day because he is teaching himself to speak through reading. He loves books and flipping the pages as a stim. He already knows how to read and is only around 4. His favorite word is “books.”
I know an autistic man who takes a textbook full of algorithms to dinner with his wife.
I credit my verbal IQ and obsession with books with my psychological survival as an autistic person. (I credit my physical survival with being middle-class and white.) While autism made other aspects of my existence difficult, reading and learning made me surprisingly resilient and able to think my way out of despair. I would be lost to myself without the ability to read and put my frightening experiences into context, to learn about my phobias, and escape from the angst of being alive.
So just let kids read and don’t call it a damn disorder!
Since I began a support group for women and non-(gender)-binary individuals this year, I’ve learned more about gender as it relates to autism. A while back, I wrote a clumsy piece in which I was trying to figure out why people sometimes mis-gender me in conversation. I give several good reasons, which I’m not going to rehash here, that have to do with how I was raised and socialized as a kid with Asperger’s.
But after some deeper thinking, reading, and talking with non-binary folks, I recalled some things about my youth that suggest that I am another spectrum person who shows gender diversity. For instance, my favorite pair of underwear as a four-year-old were what I called “boy-panties.” Boy’s tighty-whiteys in my size. I always begged my mom to let me wear the one pair we somehow had, but she got uncomfortable at my insistence after a while. That was the first time I remember being made to feel wrong for wanting to dress a certain way.
There’s nothing wrong with how anyone expresses their gender, genders, or lack of gender – the problem is with society’s narrow definitions.
Like most little girls, I was given dolls like Barbie and fancier baby-dolls like the ones in horror movies. I never liked them. The china dolls were ghoulish with their staring glass eyes, and I would denude the Barbies, yank their limbs off, and ignore them.
Later on in life, I would have sexual relationships with men who enjoyed cross-dressing in public and role-reversal in the bedroom. I was very much on board with this and kept having to steal back my panties from them. (Expensive!!) I just saw this as light kink rather than true sexual expression, and I did both myself and my partners a disfavor by not leaning into the psychological aspects more.
Gender also exists on a spectrum.
Outside of sexual expression, I felt confused and angry about the strict gender expectations that made it harder for me to fit in anywhere. Dresses were scratchy, uncomfortable, and made me feel even more awkward. I’ve never felt comfortable with purses or feminine shoes – like I’m a silly imposter. Instead, I prefer gender neutral clothing. I still enjoy some makeup, skirts, and some types of female outer expression. But other trappings of femininity are not emotionally or physically comfortable for me at all: women’s jewelry, eye makeup, high heels, etc . . .
On a deeper level, I don’t feel like I’m neither gender or androgynous or NON-BINARY; I feel like I am BOTH GENDERS. I feel like I have a fully-realized male side and female side. If I had been born with a male body I would be OK with that, but I’m also happy with having female anatomy, so I don’t have any physical “dysphoria.” It honestly doesn’t matter to me, although being physically male is more advantageous.
[I don’t like the word dysphoria used in conjunction with gender expression, because it is loaded with the judgment of a presumed “norm.” Same reason I can’t stand the word disorder used for spectrum conditions – the NT presumption and judgement are there. There’s nothing wrong with how anyone expresses their gender, genders, or lack of gender – the problem is with society’s narrow definitions. Say gender diverse, please, in reference to people on the gender spectrum.]
My gender diversity is entirely social and expressive in nature.
The only term for this I’ve ever heard is “two-spirit” but it is considered cultural appropriation by American indigenous people to use this term if you are not native. So what’s a girl/boy to call his&her-self?
BIGENDER is the correct term, which many of you are hearing for the first time. Now, of course, this isn’t the same as being bisexual – one can be gay or heterosexual AND bigender. Being a straight bigender woman is a little difficult. People, of every gender and orientation, tend to “read” me as lesbian or bisexual. This is enough for most heterosexual guys to rule me out – just not fem enough to fit in with the social constructs they are comfortable with and unthreatened by. It makes dating a nightmare, but dating is a nightmare FULL STOP.
NON-BINARY is identifying as neither gender or being gender ambiguous. Being BIGENDER is needing to express both genders within and/or without oneself. (But not necessarily at the same time.)
In addition to LGBTQ folks, there are non-binary, bigender, and intersex (physically gender-mixed) people who tend to have higher rates of autism or neurodiverse traits. Many of us feel the terms AFAB – assigned female at birth – and AMAB – assigned male at birth – are genuine ways to describe the experience we’ve been through. Society, the hospital, our peers, and our families forced a very particular set of gender expectations on us based solely on what we had between our legs at the hospital we were born in. It’s not fair or realistic to the way gender also exists on a spectrum.
Some researchers in Holland did a recent study on autism in gender diverse people. In children and teens referred for “gender identity disorder” (GID), 7.8% of them were also identified as autistic, compared with not even 2% of the general population. In a study that reversed the method by testing autistic people for “gender variance,” the rate was an unsurprisingly high 7.9%. The jury is still WAY out on the correlation and/or causation factors of the overlap, but it is certainly worth looking into further.
As a great article on autism and trans identity in The Atlantic by Bryony White points out, “approaching autism in strictly male/female terms has still largely excluded gender-diverse people from the conversation.”
In the meantime, just as with any difference that is harmless to others, let’s just accept it and not give people who already have problems fitting in an even harder time.
I spoke in my last post of the recent meeting I had with two neurotypical clinicians teaching a class on the psychology of autism, and how it did not go well. To recap, I had two neurotypical [not autistic] people disagreeing with my perspective as an autistic. To understand why this is so insulting, let’s imagine a demographically different scenario:
You are a black person who has just learned that two white people, who claim to have studied black people extensively, are teaching a class called The Black Experience in America for the first time at your local college – to a bunch of white students no less. You learn that they have not consulted with any black people about what will be taught or considered the perspectives and writings of actual black people. All their knowledge comes from external observations of black people by white people in clinical and institutional settings or from observing black children they have adopted.
You go in and find that they have left out every instance of black achievement, the concerns of black women and black LGBT+ specifically, and have concluded that black people would be better off if they could figure out how to act less black. You try to explain that the only accurate, expert perspective is that put forth by actual black people who have lived in America.
Yet, the white professors insist they are the ones who are closest to the truth of your own situation. They act like you took a dump on their desk for daring to suggest that it’s OK to be black and not be judged as inferior for it.
Not listening to people who are living in the skins or minds or bodies that you study and claim to uplift is useless at best and genocidal at worst.
You explain, calmly, that harms have been done to the black community by institutions and white supremacy and that this needs to be covered in the course material as well. They think that whites are perfectly fair and that racism is a thing of the past. They doubt you, debate your base of researched knowledge, and dismiss your inside observations of the black experience and what the consensus is among African-Americans on key issues. Once again they list their credentials as white experts on black people and question your sanity and intelligence. They insist that black Americans must be misperceiving their own lives and minds.
“But . . . I‘mblack,” you insist, but they continue to teach the class from a white supremacist perspective.
That’s how my conversation felt, because it was the neurodiverse vs. neurotypical/ableist version of the scenario I described. See how messed up that is? [I want to mention that black autistic people do exist, even though they are never included, and the difficulties they face at their intersection are many times worse. Few of us lead single-issue lives.]
It also felt like having a dude mansplain feminism. Absolutely ridiculous.
Much as black people and women are often presumed to be incompetent, even concerning their own perceptions of themselves, autistic people are constantly rebuked, silenced, belittled, and contradicted when we tell others what it’s actually like.
Another parallel: Our white experts on blackness have concluded that blackness is tragic because it can lead to being shot or locked up in jail. Consider this: the origin of “autism” is ‘from the Greek word “autos,” which means “self.” It describes conditions in which a person is removed from social interaction. In other words, he becomes an “isolated self.”’
Saying that most neurodiverse people have autism or “isolated-self-ism” is like saying black people have “lynch-ism.” We are identified in name by an involuntary consequence of our own oppression and otherization. The oppressor is linguistically erased. Please note that no one is lynching autistic people or gunning them down like black people; yet autistic people, because of our stigma, are being murdered, are the frequent targets of hate crimes, face discrimination in every imaginable sphere, and we have a bad habit of killing ourselves when we lose hope of human connection. The end consequences of different types of marginalization are often chillingly similar.
But who’s most responsible for this autistic state of being? The autistic person or those who see them as unacceptable? The person who is different or those who have made being different dangerous and lonely? Autism is simply a catch-all term for a wide range of neurological differences that non-autistics find mysterious, confusing, and off-putting. So they actively shut out people with these differences.
Saying that most neurodiverse people have autism or “isolated-self-ism” is like saying black people have “lynch-ism.” We are identified in name by an involuntary consequence of our own oppression and otherization. The oppressor is linguistically erased.
Every autistic person has the capacity to enjoy some, even if not much, human interaction. Most of us desperately wish for closeness, relationships, friends, and social communication. We are not inherently isolationist. This is because the majority-rule humans won’t meet us part-way and learn our neuro-culture and language as we have had to learn theirs. The communication gap is as much their fault as ours, but all the blame and onus to change falls squarely on us.
This is where autistics are shaking up the public perceptions of who we are and what we need – and clinicians and other self-appointed institutionally-backed “experts” are refusing to listen to the growing chorus of neurodiverse voices on blogs, in TED Talks, on YouTube channels, in print media, and in public and professional sphere. Much as black people are often presumed to be incompetent, even concerning their own perceptions of themselves, autistic people are constantly rebuked, silenced, belittled, and contradicted when we tell others what it’s actually like.
Clean your fucking house, clinicians! Stop destroying the public perception of us and have the integrity to evaluate the harm you have perpetuated and embrace our neurodiversity-positive perspective.
Not listening to people who are living in the skins or minds or bodies that you study and claim to uplift is useless at best and genocidal at worst.
My attempts to blaze a trail for neurodiversity rights in America largely consists of me awkwardly introducing myself to key people, online and in person, who might prove to be valuable allies. I tell them my backstory and then present my neurodiversity-positive perspective to them. If they see the light, they see it; if they don’t they are just awful to me.
At the college I graduated from (finally, with no accommodations whatsoever), a new class is being taught by two women, a psychologist educator and a clinician, on autistic psychology. I contacted them to have a sit-down to see if they were on the same page as me and therefore willing to be resources and allies.
It didn’t go quite like I’d hoped.
I introduced myself as an autistic rights advocate. The Educator was friendly and welcoming, if a bit maternalistic, and perhaps this is because she has an autistic son. However, she invited her teaching partner for the class, the Clinician, to sit in on our conversation. I’m not as good at speaking with more than one person to keep track of, but what I have to say is important so I agreed. After going along in my spiel for a while, the Clinician interrupted me as I was finishing up the grittiest part of my tale, and in a voice dripping with condescension, preceded to ask me, like I was a dumb neophyte, what I thought I was really going to do to advocate for autistic people.
In fact, her tone was so acid, I had difficultly understanding for a moment what she was getting at. What she was “getting at” was confirming the power imbalance between us by trying to insult my efforts and enthusiasm. I admit, I had criticisms of how her profession has harmed people like me and how clinicians frequently don’t listen to women who come to them with a suspected autism diagnosis. I spoke of how clinicians are prone to over-pathologizing people with neurological differences rather than working with us to figure out how to navigate our cognitive profile and cultural variance.
If you are a professional who balks at this, I think you are the one who has developmental difficulties. An important aspect of growing as a professional is being willing to heartily consider the perspectives of the very people you purport to study and help. Clinicians, researchers, nonprofits, and parent organizations have been belittling, nay fighting, the ideas and concerns of autistic adults for quite some time – intellectual disability or not.
In addition, I’ve spent the last couple of decades living as a person people took to be a normally developed adult woman. Now that I disclose my diagnosis to certain folks, I am amazed at how differently I am addressed and spoken to. Some people take on a parental tone and some speak to me as if I have an intellectual disability. Some are sarcastic or pandering, not understanding that I can easily pick up on this, but not react to it immediately. In truth, I’ve been independently navigating the adult world with no accommodations or mercy for over 25 years and I think out my actions and projects to an insanely meticulous degree.
[Note: Please speak to all developmentally disabled adults, whether their intellectual abilities are compromised or not, as if they are adults you respect and value. Always. Even when we say things that might seem uncouth or too blunt. Doing otherwise is ableist. If we screw up and insult you, a simple “Hey, I didn’t like this thing you said because it implied this and made me feel thus” is perfectly adequate. We value this kind of feedback because being able to get along with others is important to our survival, assimilation, and self-advocacy.]
However, when it comes to speaking the truth about the urgent issues that autistic people face in America, especially in the deep South, I’m not going to sugar-coat our perspective and its validity. Sorry if it makes you uncomfortable, but people like me are accustomed to being uncomfortable all the time. Welcome to our world.
Sadly, these condescenders are the same folks who ought to be the ones advocating for our perspective. Ableism runs deep, however, especially in the medical profession. When the patient is cognitively or socially different, the patient is always wrong, mistaken, or misperceiving the situation. There are many phrases and euphemisms to express to someone that you don’t value or believe them, and maybe even think they’re crazy and misguided.
What gives me confidence in my perspective is the chorus of voices I have encountered since taking up this cause for myself and others like me. Women in the autistic community write beautifully about their experiences, both internal and external. We have a style that transmits clarity, grace, and a heaping helping of blunt-force truth. We are consummate communicators, given the right method, and this is one of the major differences between autistic males and females. [Interestingly, the two women didn’t even directly cover gender differences in an entire semester.]
We know how to spell shit out for normals is what I’m saying.
Problem is, no one is deigning to listen. No one is seeking us out for our opinions. No one is giving us any funding, marketing, or nonprofit money to further our cause. We all know now that women and minorities have a hard time getting people to believe what they experience. Imagine how having a stigmatized brain condition and being female complicates this. Add on not being white and/or being queer and you can understand why our suicide rate is shockingly high.
After explaining to the Clinician the various direct actions and programs we need in our community to mitigate our suffering and how I’ve been avidly building a network and platform for three years, I hope her misgivings were assuaged. But, boy, it left a bad taste in my mouth. I hope they heed my words and give my ideas a bit more study . . .
One mean-ass old white woman down; a bazillion to go.
I’ve always been my favorite companion. I want to be by myself the majority of the time. After I’ve been around people I have to go home and pace around until I calm down and sometimes this can take hours. I enjoy most interactions with the people I choose to meet with, but like I said in my last post, people’s treatment of me varies a bit. So it’s always a gamble.
I know that being a woman who goes about her life solo is it’s own kind of oppression.
I go on vacation alone, to restaurants alone, to movies alone, to museums alone, to concerts alone, to bars alone, to community events alone. ALWAYS. This is highly unusual behavior even in our “post-feminist” landscape. I see all the “independent woman” memes and cringe though. We give a lot of lip service to being strong women who don’t care what other people think about us, but the truth is that most women, and men, still see an unaccompanied woman as bizarre, tragic, lame, and sad. 1000% of movies with “strong female leads” have her hooking up with a partner and having at least one quirky best friend.
Since I have been alone so much in public spaces, I know how differently I am addressed both when I am “with” someone and when I’m not. And then there’s how people treat a woman who is known to be habitually alone. We still burn witches, after a fashion. There are archetypal and patriarchal explanations for this, but I won’t get into all that.
Being popular and having people desire your company while you desire theirs is the default social goal of neurotypical people. As if everybody is the gregarious kind.
It’s strange to see people out in pairs and groups, looking at me with either petty pleasure or condescending pity when they see me out by myself. Paradoxically, I look at them and I feel so sad that they have to be accompanied in public to enjoy themselves. I feel people can be a distraction if I’m looking at art, watching a movie, or listening to a band. Even eating a meal with others can ruin the experience. Why would I want to pay for fancy food or an overpriced movie ticket if I have to try to hold up a damn conversation that distracts me from savoring the reason I’m there?
People feel like a prison after a while.
Think I’m kidding about the bad treatment? Nah. There’s the little stuff like every hostess saying “just one?” when I come in. Then there’s the big stuff like being followed by strange men when I depart somewhere. And the medium stuff is how I always get shit service when I sit at a bar by myself. Or how people see me conducting my life solo and assume I have low worth, social or otherwise, so they don’t hear me when I speak and shut down any sort of communication.
The core of female identity is based on our interpersonal relationships, not our individual merits. Every little girl, socially impaired or not, picks up on this very early as if our lives depend on it. Because our lives do depend on it. Women have to rely on more protective layers of society in order to survive because, well, all the rampant gendered violence. And poverty, etc. Just as a white person will never quite understand the anxiety of getting pulled over like a black person, a man will never know the anxiety of being a woman out by herself. Or living by herself.
Isolation can be a death sentence for a woman.
A single woman with no children is practically a non-entity. Unless she’s young and hot or has a high-powered career, why is she even here? What’s she good for? Get the torches and pitchforks!!!! Think I’m kidding again? I applied for TennCare once and they called me back and the only question I was asked was, “Are you pregnant or do you have a child?” I said no and that was the end of the conversation. They don’t help jobless single women without children. No one does.
A rule of thumb in social theory is that if you are a woman – ANY kind of woman from any group or background – and you don’t conform to a degree that isolates you, you are generally in danger of poor childhood and adult outcomes. Women are expected to be accompanied in spaces where social activity occurs. When you are not, the freaks looking to separate the “weak” from the herd perk right up and even kind people do not know how to address you respectfully.
A week ago when I started writing this I had far more hope for changing how society and power structures view independent, intelligent women, but damn if this isn’t a painfully disappointing juncture in history. Whether you have the protection of a social circle or not, take care of yourselves out there, and keep your chins up!
My passions (and vendettas) have led me to lend my talents and testimony to many local organizations fighting injustice. All social justice groups are flawed in some ways – we are only humans trying to help other imperfect humans. However, some orgs and non-profits with the goal of helping targeted minorities are inexplicably headed up, even in 2018, by white, cis, straight, able-bodied, neurotypical men.
Most of them start out with noble intentions. They have a transformative college class, an indirect experience, or read Chomsky and/or Zinn, and then the rage kicks in. Rage that doesn’t necessarily belong to them and they can’t ever fully understand. Unfortunately, when white men with no ax to grind get het up about injustice they assume the way to help is for them to be in charge of activist groups and efforts. And don’t think for a second that non-intersectional white women are immune to this impulse either.
At a time in my life before I was diagnosed with an invisible disability, I really wanted to help lift up the downtrodden because I felt my privilege put me in a unique position to do so. I went to school to become an “inner city” high school teacher, but in the teacher education program at college I found myself uncomfortable with how we were taught about economic and racial inequality. The tone was condescending and we were given assignments wherein we went out into predominantly black neighborhoods to study them like they were specimens or a different species altogether. From all the shade I saw the few black teaching students throw at our old white male professor, I could tell they disapproved as well.
It’s fine to utilize privilege if you are a luckier member of the same demographic, but cross-demographic advocacy, while vital, can be problematic. At some point I realized all high school kids are evil monsters and the black community doesn’t want or need my help. I dropped out of the teaching program with one semester to go and finished up my useless English degree.
Now I’m involved in criminal justice reform, not because I feel guilty about what people of color deal with, but because I’m an especially lucky member of another demographic also targeted by police and the system. I’m appalled at what black & brown people experience, but I can never truly know enough about their perspective to loudly insert myself into their campaigns for change – and the idea that a white person(s) would take charge of their activist space is disgusting, but it happens. A lot.
But because I’m an autistic woman, I’ve directly experienced police brutality and entrapment in various broken institutions. However, I’ve still had to convince the far less oppressed people in charge of activist efforts that I’m worthy of speaking and taking up space when it comes to these issues. Some of these “interviews” have been darkly hostile. For instance, not many white guys invested in helping black people are aware of disability issues and a few have been bigoted towards me – an intersectional feminist covered in police brutality scars.
Truly, there are no completely safe spaces yet. Say a social justice bro corners you in an inappropriate manner and shows you the kind of guy he really is when the other do-gooders aren’t watching: lots of women and minorities won’t say anything about it to other members for fear of thwarting the cause or being accused of doing so. Especially if that ableist white man is threatened, territorial, and totally in charge of the space.
Every time I join a new organization I go through this heartbreaking process of “winning over” the white male (or normal female) leader. It’s not like these are paid positions and most orgs purport to be accepting of all people willing to help – so why am I having to fight so hard? Why do I feel oppressed in places where everyone in the room has read Chomsky and Zinn? (BTW, Chomsky is also on the spectrum bros.) Speaking the social justice gospel isn’t the same as embodying it. Open-mindedness doesn’t stop at one or two new realizations – it means continual self-examination for missed blind spots.
So to the well-meaning minimally-oppressed out there: Thank you for your time, talents, and work, but the minute you begin setting requirements for participation and excluding those with a greater stake in the cause, you are falling back into the ideological mire you brag about having escaped.
Perhaps you’ll heed a message from a fellow white guy, so . . .
The past month or so I’ve been over-exerting myself because I have some wonderful opportunities coming up. I applied for a writing fellowship and, this past week, prepared my presentation for the 2nd Annual Southeast Adult Autism Symposium. If you are in the southeastern portion of the U.S. around the 21st of this month I highly recommend registering.
The fellowship is about my negative experiences with various powerful institutions as a neurodiverse woman. The presentation is about my experiences with sexual assault and social manipulation (and how to avoid it). So it’s been pretty intense having to deeply examine and write about these adverse incidents again. All the statistics are grim and it’s very clear that the two groups of people that are the most disadvantaged in America (besides, of course, people of color and women) are the cognitively disabled and the imprisoned. I’ve met people who are all four of the above minorities, and they are royally fucked. They never even get a chance.
Well, I screwed up my life so much that there was no way I was ever going to build a typical career from the ground up. I have massive employment gaps, a criminal record for a very stigmatized crime, I take medications that show up as illicit drugs on pre-employment drug tests. Since I’m not an automaton or snitch, I don’t ever do well on those mysterious pre-employment personality surveys, I fail the math test every time, and, being an isolating person, I don’t have any personal or work references.
For many spectrum people, trying to fill out a simple job application is enough to trigger a meltdown. I don’t remember names, dates, phone numbers, or the order they came in. In addition I was heavily, incorrectly medicated for most of my adulthood. A lot of it is indistinct except for the bad stuff. I don’t have any idea what to write down. I panic.
Once I got a diagnosis, I realized I was still on my own and had to create my own opportunities. No help was coming. So I read books about leadership, compromise, communication, building movements, and lots of other relevant subjects. I basically voc-rehabed myself. I was privileged enough to have the time and space to do this by not having to work and being left alone to heal for several years. And it took that long.
The reason I speak and write about tough issues is that most people who’ve been as marginalized as me are never spit back out of the Leviathan. They don’t have the words or the resources that I do. Absolutely no one else who has been that low is visibly advocating for them – the forgotten spectrum men and women who are swallowed by failed institutions ranging from inadequate and misguided, to malicious and punitive.
I’m also playing the hand I was dealt.
My family is not happy that I don’t “just move on.” They don’t like people who “dwell on things” and “stir shit up.” What they don’t know is that “voice feeds on the lack of opportunity for exit.” I can’t take a traditional, and probably safer, route to accomplishing anything and thus exiting my circumstances. My past and my disability have trapped me. I have no clear exit. But I do have a voice. Voice is draining and has consequences, but it’s better than dying anonymous without ever having risked something for someone else.