On silencing the neurodiverse in “woke” organizations

hypocriteIn my last post I addressed the problem of white-savioring and gatekeeping in social justice movements and non-profits.  Now I want to discuss otherizing behavior toward those with neurological differences in the same spaces.

For the past year I’ve been attending and helping out on several local committees and in non-profits which have an open-door policy, meaning anyone willing to help is allowed to attend. (Some of these orgs are for women only, though.) If that’s not the case then they don’t know how or where to express exclusivity – other than by shutting down “interlopers” through hostile interrogations, passive-aggressive bitchery, scare tactics, and conversational stonewalling. All intended to get me to stop participating or say less.

It’s not going to work. I have no qualms about embarrassing myself. I’m not participating to be popular or make friends. I’ll never stop expressing my perspective because my story has immense value.

Invariably, I have been transparent about who I am, what my diagnosis is, what my experience is, what my intentions are, and exactly how I can help. I’ve always observed the behavior and responses of neurotypical people, not just for shits and gigs, but for my continued survival. Their responses to meeting me are incredibly varied and fascinating – and often depressing.

Throughout my life, people’s responses have fallen into three extreme categories:

  1. Deep admiration – Since I have raised my public presence by speaking at symposiums, attending council meetings, and re-partaking of the fun social events happening in my hometown, some people have really taken to me and are not shy about expressing their admiration for my resilience, intelligence, and personal insight. Because they decided to hear me out before passing judgement. These people tend to be the best types of people, the most compassionate, the most inclusive, and the most intelligent, well-read, and genuinely woke.
  2. Open hostility – People who are honest and enthusiastic can be terrifying to those who are full of shit. Fear of the unknown and frustration with different social presentations make immature, territorial, and socially-obsessed people uncomfortable and prone to all the myriad forms of bullying and exclusion. I dismiss these types of people out of hand. They aren’t ready to help anyone yet. You can’t harbor contempt for one group of marginalized people and effectively help another marginalized group. (BTW, I include passive aggressive behavior in “open hostility,” because, although more subtle, it’s still pretty visible to others and obvious to me.)
  3. Confusing ambivalence –  I can’t decide who is worse; people who privately befriend me, but publicly deny supporting me, or people who’re kind to me when others are around, but quietly bully me. They both do harm and need to make up their goddamn minds.

The entire time I was growing up I received extremely polarized messages about who I was. Since I spent most of my time without positive friendships to counteract these messages and put them into social context for me, I never developed a clear sense of identity or voice until rather recently.

My current “social presentation” is that of a nervous, enthusiastic, honest, and non-conforming young, white woman. No one immediately supposes I’m a person with autism or a survivor of the criminal justice system and police brutality. I seem like a weird white chick who’s probably not experienced any deep prejudice and is trying to horn in or “insert” myself. I get it. I’m very forward, but I don’t like to waste my time or the time of those in need by being peripheral, coy, and “appropriately” female and white. Either you understand what I have to offer or you don’t want to.

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But actually I’m not all that nervous (it’s just how I talk as an autistic), I’m not that young (I’m over forty), not that female (I reject the gender binary), and not that white (I was never accepted among white people; not even in my own family). The rest is accurate. You see, people fundamentally misunderstand who I am based on superficial observations.  Adult autistic women and minorities are by far the most marginalized people you will ever meet – we are barely known to exist. We have insanely high rates of poverty, suicide, sexual assault, hate crime victimization, early death, addiction, homelessness, police brutality, and unemployment.

No fucking joke, either. Here’s some info from the links above:

  • Autistic girls and minorities are likely to be misdiagnosed with multiple incorrect disorders rather than autism because the diagnostic rubric is for white boys.
  • Half of all adults who have experienced at least one year of poverty are disabled,  and two-thirds of those with longer periods of poverty have a disability.
  • Compared with the general population, adults with Asperger’s syndrome were nearly 10 times more likely to report suicidal thoughts. 66% of newly-diagnosed adults obsessed about suicide. 31% planned or attempted it.
  • “Rates of autism among the homeless population are 3000% to 6000% higher than in the general population – a percentage so overwhelming I don’t have words adequate to express my outrage.” 65% of the homeless in Devon, England were diagnosed with autism. In America, autistic homeless are misdiagnosed with mental illnesses.
  • The disabled are 1.5 times more likely to be a victim of violence than those without a disability, while those with developmental disabilities are at nearly 4 times the risk of experiencing violence. And much of that violence is extraordinarily cruel and sadistic.
  • A new study from the American Journal of Public Health found that the average life span of an autistic person is 36 years. Up to 50 years for “high functioning” Asperger’s. Suicide and neglect are the main factors.
  • “Yet a whopping 85% of college grads affected by autism are unemployed, compared to the national unemployment rate of 4.5%.”
  • Over 83% of women with developmental disabilities are sexually assaulted, over half of those more than 10 times. One third of men are.
  • One-third to one-half of police shooting victims are disabled – not mentally ill – disabled. Mostly in ways that are not visible – deaf, blind, or mentally affected.

Most woke people are unaware of what me and my brothers and sisters on the spectrum face. Bias is especially discouraging in spaces where the people feel they are aggressively open-minded and inclusive. They are usually not when it comes to neurodiversity. I either get a chance to “explain myself” and educate them about the cutting edge of civil rights or they dismiss me out of hand and shut me down or undermine me from then on.

Perhaps I expect too much from normals.

A lot of young social justice folks are also in it for less-than-noble reasons: for social perks, dating, self-exoneration from white supremacy, exploitative recognition, and absolution by the oppressed. Grow up.

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It’s like being back in 8th grade.

[Important note to the “woke” whites: Black people don’t owe us absolution or comfort for our inherent white supremacy and remorse over it. They don’t have to reward us with social acceptance for virtue signaling in the right way. They don’t have to put you at ease about the kind of white person you are. Stop trying to get them to hang out with you. Let them decide if you are the type of white person they want to know better.]

Above all fellow do-gooders, examine your motives and actions very deeply when you are advocating for a group of people of which you are not a member. “Getting woke” is a deeply uncomfortable, tedious process that should last your entire life, not a few realizations in your twenties that give you a pass on shouldering the onus of white supremacy while indulging all your other ignored biases.

Your contempt silences the geniuses in your midst.

 

 

 

 

On Gatekeeping and White Savior-ing

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“Suffer the little minorities to come unto me for approval and rescue.”

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.

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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 . . .

ht9L9Ps

 

 

Why I write about upsetting subjects

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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.

 

 

Why our local government still jails poor people even though they lose money doing it

 

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I attended the meeting of a local organization of different faith communities who are deeply concerned about the fact that poor people sit in jail due to lack of money for even the lowest bail bond, which amounts to poor and mentally ill people sitting in jail before being convicted of a crime. There were a lot of good questions and comments by a lot of good people, despite this being such a complicated issue.

Facts and figures were discussed, including the price of keeping one person in jail in our county for one day – $87. This was mentioned in passing, but this dollar amount must have made an impression on one older, very professional looking white man in the corner. He piped up and asked probably the best question of the evening: [paraphrasing here, he had all the math worked out] So if it costs so much to keep people in jail, why are we still doing so even though it’s not economically smart and the taxpayer loses money?

A tepid silence fell over the room then, and since I abhor a vacuum, I softly muttered three words, “It’s an industry . . .”  Several of the people doing most of the talking nodded and expressed grim agreement with me, but didn’t expound. The truth is that we didn’t have time to get into the particulars of bed quotas, the prison-industrial complex, political corruption on every level, and the apathy of those people not affected by criminal justice problems. I would personally recommend he delve into some Chomsky.

A disability activist I know went to a different meeting recently which aimed to start a dialogue about affordable, appropriate housing for the disabled, who are often homeless in my town. The mayor was there to answer questions and listen, but at the end he explained how his hands were tied as far as any housing solutions for us. The money and political will simply isn’t there.

I completely believe him about the lack of political will and concern for people like us, but there is plenty of money in our coffers. However, those funds are being diverted towards projects which directly target this population in a destructive way. I read the local paper and it is constantly crowing about new expenditures by the city, such as paving over and eliminating the one place downtown where the homeless and mentally ill can find shade from the southern heat and simply exist.

Or the new plan to spend tens of millions to expand the local CoreCivic (formerly CCA) prison facility capacity to “reduce overcrowding.” (Another way CoreCivic reduces overcrowding is by allowing people to die on their watch.) A tax hike was approved for this “public service” but no alternative or restorative solutions even make it up the ladder of power for consideration.

All the groups trying to change this stubbornly entrenched system of maltreatment and injustice towards the vulnerable have several big obstacles at the moment:

  • Republican control of pretty much everything right now – hence the lack of “political will” which just seems like garden-variety compassion to me
  • how to organize and who to involve – it’s been decades since the last round of sweeping civil rights reforms in America and we are rusty at this
  • lack of charismatic leadership in key communities – we (minorities and the disabled) are so beaten down and robbed of our power and credibility that it is difficult for community cohesion to happen
  • where to even begin – criminal justice problems are complicated and it’s difficult to find a chink in the armor of such a well-established system of institutions backed up by those with money, power, and many lawyers

But it doesn’t matter. These are times that define who we are and if we can’t find it within ourselves to correct atrocious treatment by our own leaders, locally and nationally, we don’t deserve our sense of American entitlement. We are no better than the multitude of countries we look down on for dystopian maltreatment of their citizens and those seeking asylum.

If you are concerned about these problems, roll up your sleeves, do some internet research, and call meetings in your communities. Don’t forget to cooperate with other helpful organizations in your area and share information. Show your local politicians that your city isn’t just about new businesses, nostalgia, and building projects for tourism and gentrification. Define your community by how “the least of these among you” are accommodated and saved from horrible circumstances.

Passing Means Always Passing: How Disability Systems Punish Functionality

Aut of Spoons is a lady after my own heart. Here she explains EXACTLY what it’s like trying to pass and function as a “high functioning” autistic person. We can “pass” for normal just long enough to convince every institution designed to help people like us that we don’t actually need help. There is no temporary respite for people with variable functioning levels in America. Please enjoy!

Aut of Spoons

I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.

I can generally pass for neurotypical. I can be independent. Until I can’t.

There are two ways that this comes back to bite me in the ass: one is in…

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What it’s like to be autistic in jail

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We are now accustomed to seeing people of color suffering at the hands of ill-applied policing techniques on the nightly news. A lot of us are still trying to process incidents like these and others are actively defensive on behalf of the blue lives in our communities. However, we seem unable to see police mistakes and misconduct through any lens other than race in America at the moment, and that’s leaving out entire vulnerable populations who might not be people of color or people of color who are targeted for reasons other than (and including) race.

[PLEASE NOTE: I am NOT saying that we should stop looking at policing through the lens of race, but we do need to add other at-risk types of people to the conversation who keep suffering at the hands of law enforcement and the criminal justice system. I am also NOT anti-cop or unaware of the horrific shit police deal with on a grueling daily basis. I believe poor training and funding are to blame, as well as a criminal lack of mental health and disability services.]

For instance, being black in America instantly, visually places you in a marginalized underclass regardless of actual economic status or intent, but there are other ways to enter a targeted group other than having a different skin color. Being disabled or mentally affected in any way also puts a person at a greater risk of being victimized by a series of interconnected and deeply broken institutions. The other main groups affected by police misconduct are school children and very poor or indigent people of any color. God help you if you are some combination of the above.

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Yes. School children.

While I have discussed the prevalence of police misconduct involving disabled people before, I’ve never talked about what the consequence frequently is when it’s not death: jail. Not being taken to a mental hospital or even a regular hospital. Not being connected with helpful services or a concerned case worker. Jail. The place where our society sends the people it doesn’t want to see anymore.

Sometimes I think there’s just two types of people in the world – those who’ve been held captive by a hostile force and those who haven’t. Either jail is something that makes your favorite shows more interesting to watch or it’s something that changes the course of your life forever. And makes all those shows look dumb as hell afterwards.

I’ve been to jail a few times. OK, more than a few. I’m not going to go back over why I ended up there, so let me tell you what there is like. People with autism have traits that cause serious problems in a captive situation:

  1. Sensory sensitivities
  2. The need to be in control of what is happening to us and our environment
  3. Difficulty understanding and immediately responding to questions or commands
  4. The need for medications to be administered in a timely manner
  5. Physical disabilities
  6. Not understanding unspoken rules
  7. Meltdowns

Jail is a sensory nightmare even for completely normal people who can mentally block some sensory input and regulate their emotional response to it. To me it was bright, loud, hard, and so very cold. All the time. Day and night it was buzzing artificial lights, slamming metal doors, clanking chains, people screaming and vomiting and weeping and laughing, COs shouting stuff I might need to hear. The smells and tastes ranged from pitiful to foul. The lights were never off and everyone had to put tube socks (called eye-socks) over their eyes to block out the light to sleep. I didn’t sleep.

This input alone caused my blood pressure to go into dangerous territory during all my stays. It was never treated although they were aware of it and concerned.

In jail you (and your concerned family) are never told what’s going on, what’s about to happen, where you will be taken, or who can be of help. The jails are not running a customer service model, in other words. Your concerns about what’s happening to you are purposely ignored, even exacerbated. This utter confusion and lack of control is horrible for anyone to endure (in fact, used by the Nazis as torture), but imagine you are someone who depends on a strict schedule and/or familiar surroundings to keep from having a serious meltdown.

Trust me, don’t ever have an autistic meltdown in jail.

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They’ll drag out this puppy for you.

In jails around the country, any person exhibiting recalcitrant, repetitive, or any unusual or simply annoying behavior can be put in four or five- point restraint chairs and tased to within an inch of their lives. I still have my scars. I was in no way a danger to myself or others at the time, I simply, very politely asked for some time to calm down before they started sticking needles in me. They didn’t grant me that wish. I’d already told them I was having a “mental health crisis” which was the best way to describe it at the time.

In law enforcement lingo, this is called a “pain compliance technique.” Nice.

Strapping someone down for any reason and tasing them is still apparently legal even though the UN Council on Human Rights and Amnesty International have roundly condemned this practice in the USA.

Y’know. Because it’s torture. That’s right, America. We don’t just torture in Guantanamo Bay and other “black sites”; it happens in every city and county in America right in the middle of your community to the most vulnerable people you can imagine – the mentally ill and disabled. Because we can rarely fight back literally or legally. (No one believes what we tell them, if we can tell them, anyway.) So they get away with stuff like this and a million other malicious slights and dangerous inefficiencies.

Like denying vital medications even when breathless family members rush them to the jail with instructions about administering them in a timely fashion. This also happened to me with an anti-convulsant and several psych meds that one should absolutely not be suddenly taken off of. Or in many cases humiliating the physically disabled by not providing the most basic medical supplies they need.

The point of jail is not to keep you away from society to keep society safe: it’s to insert you into an economic system that profits from you being there, as long as you are someone who lacks credibility and agency. As long as you are a warm body that can be kept barely alive (if not entirely sane), you are treated like a product to be processed as efficiently as possible by understandably depressed and scandalously under-paid, under-trained staff.

Right now in my town which I love so much, a young autistic man is being held in jail after an altercation (domestic assault) with his aunt who couldn’t calm him down. This young man is underserved and now sitting in an environment that will traumatize him for years to come, without his family, surrounded by a bunch of tough customers who will not know how to deal with his differences. (Did I mention that jail is also a socially brutal place?) He is being denied needed medications and the jail is keeping his mother in the dark about his condition.

I’m very concerned that the above story will be the last we hear about this boy. When, O when, will we stop and take a look at the larger, more frightening portrait of American criminal justice and realize that absolutely anyone who is powerless or misunderstood is unsafe? Jailing is an industry and, as such, needs to both grow and find new sources of “raw material.” When you are sick or disabled, and therefore can’t either produce or consume enough for the economy, you become the commodity itself.

 

 

 

 

 

 

 

 

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On Asperger’s and labeling

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I keep hearing this refrain from disabled people all the time: “[Insert disability] doesn’t define me!”  And the related, “I don’t want to be labeled!” I get it. If you’ve lost part of your body or the use of it, being thought of by people as nothing more than a person in a wheelchair or “the blind guy” or “that deaf girl” is horrible and limiting.

Clearly there is more to a person than a visible difference. That blind girl has talents, interests, and interpersonal relationships and that deaf guy has a job and a family. Being known or recognized by a superficial difference is unfair. They are not their disability. It doesn’t bear on who they are as an individual and has little to do with their personality.

But being on the autism spectrum is demonstrably different.

What I’ve learned as a person who only just “discovered” being disabled, even though my personal history is proof enough, is that I’ve been carrying labels around with me my entire life and I’ve got little to no control over this. Most of those descriptive labels are included in the word collage above, but a few are missing:

  • weirdo
  • slut
  • prude
  • retard
  • nerd
  • spaz
  • loser
  • wannabe

Notice anything about those words? Not only are they negative, but several are contradictory. For instance, some people conclude I’m a super-smart nerd and others talk to me like I’m a 5-year-old. It never made sense to me before, but then I figured out that context is everything. If I’m in my element, which is talking about subjects I love, I come off as erudite and insightful. When I’m out of my element, say in a casual social scene, I’m at a loss and my “retarded-ness” comes to the fore. I stay on the edges creeping out the people just trying to have a nice evening. When I do speak it’s by blurting lame shit, stuttering, and bringing up the very things I know I shouldn’t bring up. Like politics, religion, and book-learnin’.

The hard truth is that we ultimately have no control over what other people are going label us. And they will label us. All the politically correct lectures will do no good. Garbage humans are always going to be cruel and define us by our differences; especially the superficial, hyper-social hierarchy climbers. All they see is someone insignificant because we don’t play the same game or have a “killer instinct.”

And no matter how hard I try to pretend normalcy or whether I disclose my condition or not, eventually people will find me off-putting or simply hard to define. When your presentation and personality are difficult to place within a known social group or “type,” it makes people deeply uneasy and they won’t understand why. They begin to talk to one another about me or suspect me of I-don’t-know-what. People become stand-offish and wary, but increase their scrutiny of me. This makes me nervous and I seem even more strange. Things fall apart.

Negative feedback loops are a bitch.

I reside in the Uncanny Valley, but not because of how I look – because of how I behave. It’s the Uncanny Valley of Social Interaction. Unless you are on the spectrum and are therefore able to observe social skills, presentation, and language from an outsider’s perspective, you can’t see how proscribed and deeply embedded are the social skills of neurotypicals. Most of the time they can’t even put their finger on exactly what it is about me that disturbs them so much, but it is what it is.

And there are consequences.

By self-labeling as someone on the spectrum, at least they know what makes me seem odd. Of course, there are always the people who will discriminate or talk down to anyone on any part of the spectrum, but those assholes are going to be problematic sooner or later no matter what. I would rather people who are in my day-to-day life know why I’m invisibly different. It’s the speculating and confusion that makes people the most uneasy.

The unexplainable is disturbing.

Another reason I don’t mind being defined by my differences is that Asperger’s does determine most things about me. While a person isn’t their inability to walk or hear or see, everyone is in a very practical sense who their brains are, and mine is autistic. We are our neurology. Everything from my interests and personality traits to my life history and physical problems are encompassed by my diagnosis. That’s why person-first language isn’t important to me. “Autistic person” or “person with autism” adds up to the same treatment at the end of the day. Whether I want it to be true or not, people are going to define me by my Aspien traits – knowingly or unknowingly. And if they don’t know, they’ll come to wildly incorrect conclusions on their own.

Look at it this way: No one is up-in-arms about positive labels. No one is chanting, “I will not be defined by my awesome career as a rich CEO.” Or, “Being a mom has nothing to with who I am.” Or, “I don’t want to be labeled as an amazing lover.” These are the first things people say about themselves when they meet a new person. (Maybe not that last one.) The furor over “being labeled” or “defined by” something only applies to negative labels that people are ashamed of.

I’ve been embarrassed and embarrassing for my entire life – I’m not going to be ashamed anymore of who I am because of my unique mind and social presentation. We need to work on changing how people view the difference; not what words people use to describe it.

Here’s an excerpt from American Nerd by Benjamin Nugent that makes this point better than I can:

There’s a scene in Mark Haddon’s novel The Curious Incident of the Dog at Night-time, narrated by a teenager who could be described as having Asperger’s Syndrome . . . He’s on a school bus full of children on the way to the special school he attends, children who would have once been called “mentally handicapped,” “retarded,” or “mentally ill,” but who are now referred to as having “special needs.” The kids from the normal school run alongside the bus and scream “Special needs! Special needs!” The point is that stigma doesn’t accrue only to people who are given inherently stigmatic labels. Any label becomes stigmatic when it means you go to a different school or turn from a central hallway into the room set aside for children who have needs beyond or different from what other children have.

Now I’ve noticed in the entertainment and social media that referring to someone as “on the spectrum” or “having Asperger’s” is the new “retarded.” On one Netflix show, Big Mouth created by Nick Kroll and Andrew Goldberg, cartoon pubescent Andrew is looking for a seat on the bus and has this little exchange with his imaginary goad called the Hormone Monster:

Hormone Monster: Don't sit with the kid with the rolly backpack.
        He can't read social cues.
Caleb (to Andrew): Hi, you're looking at me.
       How tall are you? There's a monster next to you.
Hormone Monster: Eh, what's up, Caleb? Oh, yeah, yeah, yeah.

I don’t think it’s meant to be blatantly insulting, and the other kids are being superficially nice to Caleb, but the implication that he’s unacceptable even as a seat-mate on the bus is still heartbreaking. However, I want to point out that Andrew is the only one who can see the Hormone Monster except for Caleb. Asperger’s always invites both insults and a strange admiration from neurotypicals. They reject us out of hand, but believe we have magical abilities and powers of perception. Caleb makes a few other appearances in subsequent episodes and he always comes out with the most astute and truthful (although blunt) observations.

Which is often true of us. So at least we’ve got that.