On (Not) Understanding Intersections in the Autistic Community

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The other day I was upset by a particular thread in a popular private FaceBook group for autistic people and their allies. There was a post about how a woman in a group was selling a personal cosmetic line and one of the eyeshadow palettes she was selling was autism-themed. It was a great selection of colors, but the cover art featured the dreaded puzzle piece and was predominately blue, which most in the autistic community now see as offensive. Immediately there were furious posts that eventually led to several people giving detailed instructions on how to report her until FB took down her account in order to destroy her business.

But little background: Her young child had just been identified as autistic, she was struggling financially to provide for him, and using the profits of the sale of her cosmetics to support them. And she is black.

Luckily, some VERY patient black autistics set the record straight and spoke out to white autistics in a long, beautiful post about why intersections matter, how to critique Black Owned Businesses who are being ableist, and why black autistics have a harder time than white autistics. I would love to link to it in full, but it was a private group. Here are the major points:

  1. Black families and autistics are not given any decent resources upon diagnosis. While it is difficult for all people to find proper information on autism because of the vast web of profit-driven misinformation surrounding the condition, black people are given even fewer leads to go on and are not offered the same resources or supports. In addition, what supports do exist are largely biased and clinics are run by professional, neurotypical white people who are TERRIBLE about understanding or reaching out to communities of color. (I have seen for myself how bad the racism of clinicians is, especially towards black people.)
  2. Black families and individuals are far more upset by an autism diagnosis because it’s an added layer of extreme danger when they move about society. Black families trying to accommodate a disability do not have the things they need in their neighborhoods, and black kids are more vulnerable than white kids to violence from the police, care-takers, clinicians (yes, clinicians), and the rest of society. (This in no way suggests that white autistics are not vulnerable to police; they are. This just means the probability of having a bad run-in is higher for black autistics, and the level of violence is more sudden and severe.)
  3. The way white autistics respond to the ableism of black NTs is far more harsh than the way they respond to white NTs. I don’t know this from personal experience, being white, but I have looked through the comments on the post we are discussing and they are full of over-reactions due to white fragility. While most of the time people try to educate white NTs, the thread went immediately to “burn her business to the ground – here’s how.”
  4. Money from cottage businesses is often the way black people make up financially for lack of medical insurance, supports, and entitlements when they or a relative is disabled. Yes, white autism moms are annoying and harmful as hell, but being white they usually have more ability to make ends meet and recover their business if some assholes on FaceBook tank it.

It is incredibly hard to be any type of autistic person. We are the most erased minority out there and it gets frustrating seeing the media coverage every other minority has. We are more unemployed than any other group of people, even other types of disabled people. We have a life expectancy decades shorter than that of a black man in America. We have a sexual assault rate that compares with that of Indigenous women. We have a youth suicide rate similar to that of trans youth (being aware that many trans youth who take their lives are also neurodiverse.) We get tired of seeing the murders of autistic people not reported by the media or excused when they are covered. We get weary of open ableism in every area of life and how it is not considered serious even by “progressive” people.

But every frustration I have as genderqueer, AFAB, chronically ill autistic person with a criminal record is nothing compared to the bullshit a black autistic person faces. The sole reason I still have my life is because I have white privilege. I was given shorter sentences in jail because my parents could afford a lawyer and the judge was less harsh on me. I had the privilege of getting an official diagnosis. I have educational privilege which made it easier to look for and find the information and support I needed. I have medical privilege in that even though I still have difficulty getting a doctor to believe and treat me, I am not totally disregarded like a black patient would be. I have privilege in the autistic community because I am able to physically move and speak the way I want. I have class privilege which makes my situation easier than generationally poor autistic people of all races. I have some NT passing privilege. And I have intellectual privilege because my mind is sharp in certain ways and I can understand things with less effort.

My intersections are many and very difficult, but my life is immeasurably less challenging by not being black. Period.

I am seeing a disturbing trend in many autism groups on FaceBook and elsewhere. A person new to the subject and world of neurodiversity comes in with a question and in that legit question a “forbidden” word is used or they talk about puzzle pieces or they mention ABA (“conversion therapy” for autistic people.) In the comments, autistic people will harshly reprimand the person who is confused about why everyone is reacting so strongly. They feel attacked and leave the group with a newfound distaste for autistic adults.

There’s a few reasons this happens over and over:

  1. No one considers that there is a learning curve on this particular subject. We have noted that the media does not cover issues in the disability community and even less so from the perspective of autistic people. The information out there that comes up when you search about autism is heavily skewed towards the pathology paradigm and controlled by the companies, institutions, and charities who profit from people thinking we are diseased, disordered, and in need of invasive treatment. It’s no wonder people are ill-informed and need GENTLE education, preferably in the form of an educational article by an autistic person informed on neurodiversity theory, rather than personal attacks or interpretations.
  2. Most of us have rejection sensitive dysphoria. While this is not an “officially” described condition in the DSM yet, it needs to be addressed in our community. RSD is a trauma response common to neurodiverse people which makes it difficult to not take things very personally. It leads to reactivity that is out of proportion to the offense. In other words, we truly feel like the use of an outdated term or idea is a personal attack. There’s no ability to put it into context. I struggle with it myself and have a hard time calming down and measuring my response to certain social media threads. Or not responding at all.
  3. Autistic people, even the mods and admins, get carried away with the power and become extremely pedantic to the point of silencing people and squandering teachable moments. They often focus on the error and not the content of what is being said. We have the same dark tendencies of any person who has been bullied, erased, and dehumanized and that comes out sometimes through being unfair gatekeepers. This is wrong and all mods and admins need to give other disabled people who haven’t been exposed to the same information more latitude and less attitude. Remember that we all struggle with being appropriate.
  4. White autistics who are late-diagnosed are often carried away with finally having an ax to grind because they are suddenly thrust into a minority group when they previously thought they had more privilege than they actually do. One problem with this is that they don’t acknowledge the intersections of non-white and poor autistic people and their families when responding to posts.

If you are a white autistic person who is getting offended in discussions and firing off at people, please take a moment to list the ways you do have privilege in America. No matter how bad you have had it as an autistic person, and we have certainly had it worse than anyone but us can know, it is still not the level of erasure and danger a black or non-white autistic person has experienced. It is horrible for black autistics in these white-dominated groups to experience our level of fragility and defensiveness. We all have racist thoughts, words, and attitudes because we were all raised in a culture of white dominance. Being autistic does not make us immune from the flaws of regular people. We have much to unlearn and it is a life-long never-finished process.

A few other things that came up in the thread about this woman’s cosmetic business deserve comment:

  1. Do not EVER compare puzzle pieces to the Star of David in WWII Europe or compare the slurs we hear to the N-word. It’s not the same thing and not as harmful (although it is harmful.)
  2. Many parents are not only getting horrible information from everywhere, but they are also statistically more likely to be developmentally disabled themselves as autism is often an inherited condition. Older people are less likely to have ever gotten a proper diagnosis and having a child diagnosed is often just the beginning of self-discovery, so be extra patient.
  3. If you are a mod or admin, before you reprimand someone, make sure you are not being reactive or having a rough day – get someone else to handle the comment or post if you are feeling sensitive or angry. Ask yourself if the error is worth alienating someone who deals with alienation all the time. If a post is mildly offensive or wrongheaded, please give the person the benefit of the doubt and do not humiliate them by correcting them in the thread – send the person a direct message and don’t be a blunt dick about it. We are dealing with rejection dysphoria. This will cut down on push-back as most people are willing to correct a mistake as long as their honor is not besmirched.
  4. And always consider the person’s other likely intersections and listen to intersectionally marginalized autistics with respect and validation, not defensiveness.

 

Native of Nowhere Survives Another Decade

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.

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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.

 

 

 

 

Hyperlexia and the Radical Concept of Autistic Advantage

reading-kid-1I 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.[1] 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.

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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.

 

One last myth to explode here: Hyperlexic autistic kids are great at “decoding” words and vocabulary but reading comprehension is poor or non-existent. FALSE

I was reading C.S. Lewis’s Prince Caspian in early second grade during class. My teacher called me up to her desk and made me read some of it out loud to her, because she wanted to see if I was really that advanced. I was terrified and thought I was in trouble. I managed to stumble through a few paragraphs when she stopped me and asked me if I could summarize what I’d just read. I couldn’t.

I couldn’t because I was trying too hard to to read aloud on the spot to think about what I was reading. I felt pressured and scrutinized (I was), so I couldn’t communicate what I understood anyway. A lot of the words were new (and British), but I was obsessed with knowing how to read everything. I pushed myself to read beyond my ability and my ability quickly caught up. I never understood why teachers and parents would freak out about me reading far above my grade level even when the material was appropriate.

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!

 

 

How self-advocacy is misused to stop the progress of autistic people

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After I was diagnosed at 40 as autistic, I wondered what the next steps for saving my life would be. I asked my psych evaluator and allistic-led sources in my area what I should do, and the answer invariably was “keep self-advocating.” I looked into what “self-advocating” meant and  here’s what I found:

“Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own lives, including being in charge of their own care in the medical system. The self-advocacy movement is (in basic terms) about people with disabilities speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others.” – poorly cited Wikipedia entry

“n. the practice of having mentally disabled people speak for themselves and control their own affairs, rather than having non-disabled people automatically assume responsibility for them” – Collins Dictionary online

Well that sounds delightful and empowering!!!

Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates.”

But that’s not what the professionals telling me to “self-advocate” meant. It didn’t mean that I was to have more control over what drugs I was prescribed, how I was addressed by professionals, that I was to be led to appropriate resources and helped to access them, or that I would be able to “call upon the support of others.”

They used the term “self-advocacy” to mean the opposite of that. I would speak with a mental health provider and ask for help with accessing programs, starting programs that would help my community at large, support to fight the over-pathologization of my condition by local medical professionals who wouldn’t listen to me self-advocate, a therapist who was autism-informed (for adult women no less), or even training for how to self-advocate, and the answer was always, “We can’t help you with that. Those things don’t exist here. Keep self-advocating.”

It took me a few years to find the right people and programs.

I thought reaching out to professionals was, first of all, what they wanted us to do because we are not considered experts on our own inner experience. I also thought looking for ways to help yourself by accessing available resources was self-advocating.

They were in effect telling me to “bootstrap” my way out of systemic oppression with no help from the autism-industrial complex. Doctors DO NOT generally listen to the opinions and treatment plans, no matter how well-informed, of non-conforming, invisibly disabled women. This is clear by the number of posts in autism groups which relate how abysmally difficult this is because of bald-faced intersectional discrimination. I needed someone, anyone, to go to the doctor with me to a. be a witness to my ill-treatment, and b. back my ass up in there! As a cognitively disabled woman, I do not possess the necessary credibility. But I was being told, “Go up against this powerful man and impenetrable institution alone.”

Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need. 

Autism centers in America DO NOT generally have many resources for autistic adults including classes for self-advocacy training. Even though autistics are giving one another tips and tricks online, we still run up against the wall of our own poverty and discrimination. The problem isn’t that we aren’t self-advocating or trying to; it’s that people refuse to give up the power they have over us. We have no leverage.

It’s interesting to note that other culturally marginalized groups are not asked to self-advocate, because they are seen as being oppressed rather than intrinsically broken. As the black community has pointed out, they simply don’t have enough resources to self-advocate under the level of repression they experience. Neither do we, no matter how good we are at being the squeaky wheel and insisting upon ourselves. No matter how much we research our condition and the medications we are given. No matter how self-aware we are.

Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness.

We need people outside our community to care enough to reach down and help lift us up, and share their superior coffers and connections and reputations, because we are often literally unable to speak for ourselves and not heard when we do. For instance, black people need direct action from white people to reach their civil rights goals, without whites taking over the narrative and stealing the funds.

Autistic people need exactly the same thing from allistic people. Stop putting all the onus for change back on the most powerless. Find us the money, train us to empower ourselves, help us get the backing we need to create support systems according to what we say we need. 

The truth is this: self-advocacy is primarily a term used to put down the efforts of #actuallyautistics advocating for all of us. Those of us trying to form a larger movement by and for autistics are still incorrectly called “self-advocates.” In fact, most of us can advocate for others better than we advocate for ourselves. This framing gives disability organizations permission to not properly compensate autistic activists for the unpaid labor we do to give our community a centralized voice and civil rights. Our huge hearts, passion, and sense of existential urgency is leveraged against us and we burn out with little to no support.

Implying that advocates are only looking to help themselves personally plays into the dangerous false narrative that autistics are self-absorbed and have no empathy or broader social awareness. The saddest truth in all this is that the autism industry does not want us reaching our own internal consensus on the issues, joining together, and advocating for systemic change. It would really mess up their bottom line if we became self-determining, a true community. We would have a united front for ending ABA, gaining financial power, building cultural credibility, and eventually not needing them once we have autistic professionals, researchers, and representation in place.

Enjoy this fun video!

Gender expression on the spectrum

the-pink-dressSince 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.

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Not a serial killer, just interested in how things are put together – I SWEAR

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.

Sound good?

 

 

 

 

 

Is it time to get rid of the autism puzzle piece?

 

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I have to admit this was nothing I’d ever thought about much until a few weeks ago when a few new acquaintances pointed out that the generally accepted symbol for the autistic community is the blue or multi-colored puzzle piece and that it makes them uncomfortable. Being recently diagnosed, I assumed my own interpretation: I had been confused my whole life because I didn’t have a scientific framework for understanding my perceptions and behaviors. When I figured out I was autistic and then got officially diagnosed it was like I had been given the one missing piece of a mystery I’d been trying to solve for way too long – why am I different?

My research revealed that the professional who introduced the use of the puzzle piece, Gerald Gasson, a parent and board member for the National Autistic Society in London, had a somewhat different intention. An article on the site The Art of Autism  says, “The board [of The National Autistic Society] believed autistic people suffered from a ‘puzzling’ condition. They adopted the logo because it didn’t look like any other image used for charitable or commercial use. Included with the puzzle piece was an image of a weeping child. The weeping child was used as a reminder that autistic people suffer from their condition.”

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Jeez, what a downer.


Parents often see it as an expression of how “puzzling” their child’s disorder is. One said, I believe my son is a mystery – still, after almost 26 years, and he is ‘missing’ certain understandings, skills and abilities as an ‘autistic person.’ He would tell you – as he told a group of volunteers at a training he helped me facilitate yesterday ‘I just don’t get certain things.’ Is it insulting to imply through imagery a particular truth about him?

Yikes. Yes – it is insulting if the focus of that symbol is on particular negative traits rather than positive or neutral ones. 

Another mother says, It’s a symbol – perhaps to some, it’s a ‘missing’ piece. I’d like to think our kiddos are the COMPLETING PIECE of the human puzzle.

One is focusing on the negative traits they see in their child and the other is romanticizing the autistic experience. However, it doesn’t help that there are many retroactive attempts to make the puzzle piece seem more positive, when it was initially meant to symbolize our “mysterious-ness” to neurotypicals who had not yet figured out how to communicate in our styles and truly hear us as a community. 

As an autistic woman named Jane Straus explains, “It is inaccurate, in its assumption of boy-blue, and its assumption that we are so impossible to understand. Those of us who can communicate in a way that normals understand are so simple and direct in what we say, that if they would just pay attention we would be not be a puzzle at all.”

Other criticisms from the adult neurodiversity community are valid as well:

  • The puzzle piece was popularized in America by the organization Autism Speaks, which despite hiring an all-star public relations team to change their original neurodiversity-negative outlook, still has no autistic individuals on their board of directors or leadership team. (There was one, but he became disgusted with the organizational perspective and left. He has not been replaced.) The majority of autistic adults believe that autism only speaks if someone with autism is doing the speaking and they have a great deal of animosity towards this mega-organization. 
  • The puzzle piece is a symbol based on a child’s toy. Now that we know that the majority of spectrum people alive today are over the age of 18, but missed or misdiagnosed in the past with multiple “mysterious” disorders, a childish symbol feels babyish and condescending to a group of self-determining, intelligent, and sophisticated people from all walks of life. We constantly have to fight the perception that autism is only a childhood disorder and being spoken to as if we are not adults in our day-to-day interactions. 
  • The puzzle piece was chosen by parents and organizations FOR us as a symbol to represent a health problem rather than being chosen BY us as a different way of being that is acceptable. In short, no one asked autistic people if this was a symbol that we wanted. Ours is a struggle to define ourselves and have the right to be self-determining. 

The problem with advancing the knowledge of autism and improving our outcomes isn’t a lack of research money, determined parents, public concern, autistic activists, or dedicated professionals trying to figure us out – it’s that we are already speaking out eloquently and frequently and we are being ignored, discounted, gaslighted, and contradicted by people who do not share our neurological perspective and have professional reputations to uphold. The natural consequence of this is that appropriate support services for adults have not materialized yet, because our opinions are not considered expert even though we live autism every day. 

We have yet to be considered authorities on the autistic experience because the cultural stigma around any sort of mental difference is still vast and insidious. 

This leads me to why the puzzle piece must be phased out eventually. As I mentioned, I personally chose to see it as a positive symbol as do many other spectrum people. This is perfectly alright. If you are an individual who creates artwork based on the puzzle piece, has a tattoo of one to show your support for us, or a clinician with puzzle artwork in your office – do not despair! You haven’t done anything wrong. Continue to enjoy this symbol. 

Let me make this crystal clear – every neurodiverse person is a fabulously unique individual and has the right to decide what representative symbol they want to adopt for themselves which they are most comfortable with. 

Yet a growing number of autistics are more comfortable with the color gold (for Au) and/or the multicolored infinity symbol to represent our burgeoning civil rights movement. As a group, we need a symbol that isn’t triggering for a large number of us. 

The puzzle piece with its current meaning about how confusing we are is distressing to people who’s biggest frustration is constant misunderstandings and miscommunications with a world that won’t meet us half-way in the first place. Understanding is a two-way street, and the majority neuro-culture puts all the responsibility and consequences for misunderstandings squarely on us. This is deeply problematic. 

We need to finally define ourselves, with or without the backing of professional organizations, because so much of the true autistic struggle is about being forced into becoming something we are not – someone publicly approved of and cooperative and compliant. But not ourselves

This is a terrible erasure. 

In America, there is a tendency for established systems and institutions to fail at self-examination, official apologies, and restitution for past harms. Part of that evolution is admitting to mistakes with public apologies that don’t have to be demanded, examining organizational perspectives against the consensus in the population being served, and phasing out symbols that carry historical baggage for that population.

I hope that any group, professional, non-profit, or organization which seeks to improve the lives of autistics and neurodiverse people is open to possible changes in the future and will work to center the voices and respect the feelings of spectrum people. 

Thought Experiments for Autism Experts

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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 . . . Im black,” 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.