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. 

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.

 

 

 

 

Don’t call me dude: The misgendering of non-binary people

I have an acquaintance who shares one of my biggest passions and we occasionally collaborate. We have been helpful to one another’s causes over the past year and have a productive back and forth. One problem: he calls me “dude” a lot. Even in texts.

This is me:

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I know. I ooze masculinity.

But I still get “dude-ed” by people regularly and I have a few theories about why:

One: They misinterpret my manner in conversation as being flirtatious when I don’t mean it to be (or want it to be), so (if not interested) they misgender me to send the message that they don’t see me as a sexual option. This the likely situation with my collaborator.

I don’t have a lot of nuance in my social presentation. When I’m trying to be nice to a man OR woman I know it can come across as a little too friendly and flirty, and this has led to sitcom-like misunderstandings in the past. As I’ve said in other posts, have two modes: Golden Retriever who’s been cooped up all day and Daria. Not a lot in between those until I get comfortable with someone.

Two: I’m not gender binary in that I don’t have super-femme way of speaking or moving or what I think of as an “affected” vocal style. When people hear me speak I don’t sound like a girly-girl or even a grown woman. No vocal fry or genteelness in me. My voice is gender neutral, but when people with binary expectations hear me they read it as masculine. The speech patterns of women in our culture (and others) is not inborn – it is a learned affectation.

For instance, my sister speaks to me in her “real” voice which is pitched lower like mine is, but when she is in certain social situations she, perhaps unconsciously, pitches her voice higher and starts to sound a bit like a Valley Girl. (Love u, sis.) This is a concession to conformity I am neither willing or able to make.  Another example is the way Japanese women are expected to pitch their voices very high or they face social censure.

But it doesn’t mean I’m gay and it definitely doesn’t mean I’m a dude or that I specifically identify as one. I’m a middle-aged cis-gendered heterosexual female. And a pretty one.

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Like, totally.

I’m happy with myself. However, I know many women and men on and off the spectrum who are much more non-binary in presentation than I am. I mean, just look at Temple Grandin. She’s never spoken about her sexuality or gender identity and that’s a shame because being non-binary is very common among autistic people. I can’t speak for everyone similar to me, but I think it has to do with not “seeing” OR respecting the arbitrary gender expectations that people with better social intelligence are ridiculously obsessed with. We find it unfairly constrictive and difficult to keep up a false self at all times.

We are purely ourselves and that should be respected.

[Additionally, there is a distinct overlap between trans people and ASD – being one makes you more likely to be the other. More research needs to be done to determine why – but who really cares why? Just stop being shitty to them, because they shouldn’t have to exhaust themselves to make normals comfortable anyway. They have the highest suicide rate of any group of people.]

The last reason people call me “dude” is the saddest and probably the most likely: Women and girls (the white ones anyway) don’t allow me into their circles for very long. I have a lot of problems with NT women in particular. Therefore, unlike most little girls and teens, I never learned the “proper” gender mannerisms and speech patterns and social skills of women because I was never around them. I couldn’t model my behavior on theirs. Instead, like many women with Asperger’s, I spent all my time hanging out with dudes. (This presents its own set of issues).

In my late teens/early twenties I started hanging out with hippy motherfuckers and they pretty much call everyone dude – sometimes in the middle of sex I’m sorry to report. I mirrored their speech patterns and mannerisms so I have a dude-like way of speaking at times and this throws people off.

I hope in the future our culture can be less condescending to those who eschew some of humanity’s sillier requirements for acceptance.

Until then, the dude abides.

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Why it’s not cool to roll your eyes at awkward people

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For a while I’ve wanted to discuss one of the most frustrating aspects of having a different social presentation: gestural aggression. What’s that? It’s something just about everyone engages in on a daily basis. I’m not talking about obscene or threatening gestures. I mean the ones that we drop into conversation to let the other person know that they are mildly perturbing or that they are crossing an invisible boundary. It includes all sorts of “shade” –  huffs, sighs, arm crossing, and, of course, the eye roll. These actions can often accompany snarky, muttered, or condescending remarks.

Although this sort of passive-aggressive body language is the expert territory of teenage girls, I see people of all demographics and cultures using this suite of gestures. This is not so much a form of instinctive communication as it is a form of learned social and conversational policing by those who are more able to conform to the unspoken expectations of the interaction.

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Although sometimes an eye roll can be priceless.

For instance, I tend to get eye rolls when I get “overly” enthused during an interesting conversation. Interesting conversations are few and far between for me at times, so when I find myself speaking to someone about a favorite topic I can get “carried away” and go on excitedly after the other person is ready to speak again or change the subject. This is par for the course when dealing with an Aspie and we all do this regularly, but there are consequences that others might not be aware of.

When people roll their eyes at me it hurts, and though I don’t read body language as instinctively as others, no eye roll ever escapes me. I can fucking hear them. I just have no earthly idea how to respond in real time to something that feels so hostile to me when I am sincerely trying to be as agreeable as I can.

An eye roll says, “You are weird and inappropriate and are now on thin conversational ice.” It says, “I don’t have enough respect for you to be patient with you. You are not worth listening to.” Once more I am quietly “told” that I’ve somehow screwed up my talking again and another person is growing tired of me.

While one eye roll or exasperated sigh isn’t enough to derail my mood, the silent censure adds up and I get the overall impression that regular people don’t want to interact with me as much as I want to be included. Gestural aggression sends a harsh message over time that you are not welcome or tolerable. It makes you more nervous and less confident when you try to talk to people later on.

Don’t get me wrong: I know better than most that conversing with a socially impaired person can be laborious and frustrating. I try to make it easy on other people I’m around by putting forth a monumental effort to not draw any eye rolls or bore anyone. I consciously, meticulously try to match the tone, topic, and appropriateness level the other persons sets. I make an effort to let the other person have their say without compulsively interrupting.

But it’s exhausting, and I don’t always succeed. Paradoxically, I can police my own social presentation better when I’m less familiar with someone, but as I grow more comfortable my more exasperating conversational differences start creeping in because I feel safe being myself with that person. In the past, those people to whom I let slip my awkwardness may become confused and annoyed and pull away. Let the self-flagellation begin!

I want the socially traditional among us to understand that most weirdos are doing our damndest and attempting to offer something of our carefully guarded, loner selves to other people. I long for positive interactions and better communication skills, but when people express conversational disdain and censure, it derails those attempts to not be an isolated, squirrelly freak. And it’s not my fault.

I’ve watched so many otherwise kind people rudely shut down the conversational efforts of those autistic or simply awkward people they have decided not to extend social tolerance to. This is an insidious form of ableismPeople mostly think of ableism as being insensitive to those with physical disabilities, but people with invisible disabilities – like social and communication disorders – are still boldly discriminated against by even those who love them using social judgement and unconscious exclusion.

What I’ve discovered in my own long history of talking with other awkward people is that it’s entirely worth the extra patience and occasional misunderstanding to get to know the fascinating and insightful people trapped behind uncool exteriors. Please try to meet us part-way because enjoyable, meaningful communication always depends on the efforts of everyone involved.

 

 

Why people with Asperger’s don’t commit school shootings

 

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Student prayer vigil in Parkland (Photo: Anthony Causi)

So it’s happened again like we knew it would. Another “lone wolf” kid shot up a school and killed a number of people. Also like we know already, thoughts and prayers will be offered, but oversight of the weapons industry is utterly off the table. And, of course, people with mental illnesses or neurological conditions are scapegoated and targeted.

Mass killers such as Eric Harris (Columbine) and Adam Lanza (Newtown) have been suspected of being on the autism spectrum, but those assertions reveal a vast ignorance of the defining characteristics of autistic people. The biggest myth about us is that we lack empathy. This perception is due to the difficulty neurotypical researchers have seeing the world through our minds. A neurotypical observer may presume that we lack concern for others because the process of extrapolating the thought processes of others is impaired in us. The reluctance of clinicians to listen to what we tell them about ourselves exacerbates this. This “lack of empathy” is explained by a lack of Theory of Mind, and not maliciousness. We are overwhelmed by the suffering of others and that we possess an excess of empathy for those in distress. SO much so that we are also distressed, and “shut down” which simply appears to be cold.

A New York Times article, “The Myth of the Autistic Shooter,” states:

Whatever anyone’s particular constellation of symptoms may be, however, autism is not associated with brutality. Failing to intuit certain aspects of other people’s inner experience does not equate to disdain for human life. The wish to hurt others is tied not to autism but to psychopathy, which manifests in a deficiency or absence of empathy and remorse . . . Tarring the autistic community in this manner — like presuming that most black people are thieves or that most Muslims are terrorists — is an insidious form of profiling. It exacerbates the tendency for people with autism to be excluded, teased and assaulted in childhood and adulthood.

The definition of psychopathy is a “a personality disorder characterized by persistent antisocial behavior, impaired empathy, impaired remorse, bold, disinhibited, and egotistical traits.” These traits can lead to violence in some cases, but not all. Psychopathy is a spectrum as well and some people on it may not feel emotion for other people, but manage to stay out of trouble. For instance, an obscenely high number of psychopaths are corporate CEOs, lawyers, politicians, surgeons, and media personalities – those who have found a less violent means to demonstrate ego and lack of concern for others. Psychopaths are glib, grandiose, manipulative, and lie a great deal. As David Cullen, author of the definitive history of the Columbine massacre said of psychopaths (which Eric Harris really was), “Psychopaths don’t lie to you with their mouths; they lie to you with their lives.”

They wear a mask, but it serves a different purpose than the “pretending to be normal” that autistic people frequently engage in. First of all, we aren’t all that great at pulling off our pretending – people still notice we are struggling and strange. We’re abysmal liars and it rarely occurs to us to do so. Secondly, we pretend with the purpose of having meaningful emotional relationships with other humans; psychopaths pretend so they can get something out of someone, but have no desire for emotional connection. Psychopaths are very talented at building a false persona in order to get close to people for their own plans, convenience, and gratification, but feel no remorse or even embarrassment at being caught out.

There are at least two types of empathy and it’s vital that we explain the differences and make sure the general public is aware of them: autistics lack cognitive empathy or the ability to figure out why someone is upset even though we would do anything to fix their pain so that we don’t also feel it. The kind of overwhelming empathy we feel is called affective empathy or the ability to be affected by the emotional state others. Affective empathy is exactly what psychopaths lack and autistics have way too much of.

Psychopaths have few emotions besides frustration and gratification while autistics are empaths who feel the pain of others to an excruciating degree. Functioning MRIs have been performed on the brains of clinical psychopaths as well as autistics and the primary difference is in the emotional centers, the limbic system and amygdala. Psychos show little or no activity in this part of the brain; in autistics it is overactive and operates differently. You can’t have both no activity in this part of the mind and too much simultaneously.

Therefore, autism and psychopathy are mutually exclusive. One person cannot be both.

Much of the confusion between these fundamentally different neurological condition awkward social skills (especially when young), and be prone to perseverative obsessions. We can both appear to have a “flat affect” or facial expressions that don’t match the situation. We can both have deficits in executive function. Both psychos and autistics (and a great many other people) can be solitary or weird. But correlation does not confirm causation.

Very very few people with autism may have comorbid disorders which are associated with violent behavior. Such disorders are schizophrenia, psychosis (delusional thoughts and not the same as psychopathy), and, more commonly, substance abuse disorders. I want to point out here that even those with the mental illnesses I just mentioned are rarely violent and are far far more likely to be victims of violence. There is no greater incidence of violence among autistic people than in the general population, so we really need to think extremely hard about why certain people feel that the 3.5 million-plus people on the spectrum in America are a convenient group to blame.

Unfortunately, autistic people know a great deal about being scapegoated, misinterpreted, and targeted. We are the most vulnerable people in any society, and the only gun violence we direct at others is directed at ourselves. We attempt and succeed at suicide at a phenomenal rate and access to firearms makes it much easier. The type of gun deaths we discuss the least are suicides. Over 60% of gun deaths are suicides. Let’s not forget that the police kill us with guns, too. Autistic people are prone to self-harm or lashing out when attacked or interfered with, but there is no evidence whatsoever that we commit premeditated violence on others or have malicious intent, which is the hallmark of lone wolf and terroristic violence.

I’ve known both psychopaths and autistics intimately throughout my life and no one on the autism spectrum has tried to hurt anyone to my knowledge, and, in fact, will put themselves in danger to protect others. I have one Aspie friend who would insert himself into situations when a man was publicly abusing a woman and he’d end up with a black eye more often than not. The psychopaths are more of a mixed bag.

Me myself and every other Aspie I’ve encountered online or in real life are deeply concerned with justice and fairness and would tear themselves apart if they knew they hurt someone even unintentionally. The Autism Society released a statement a few days ago attempting to clear up this gross misapprehension.

Let’s look to more promising interpretations of the recent shooting in Parkland, Florida. What we do know about him is that his social media was lousy with violent thoughts, images, and threats. He posted pictures of weapons and ammunition. He was known to abuse young women and was ordered to not come onto the school campus with a backpack before he was expelled. All the students who knew him already speculated long before the attack that he might shoot up the school. All the signs were obvious and easily accessible, but no action was taken by any of the agencies who investigated his suspicious behavior. Although he has been described by many to be “weird,” his oddness could certainly be explained by any number of mental states other than autism.

Criminal and forensic psychologists (those who interpret the mental states of criminals for the justice system) agree that for someone to become a serial killer or mass murderer there must be a “perfect storm” of issues in an individual. Cruz had lost a parent, been uprooted to another state, had latched onto white supremacist ideology, had an apparent break-up with a girl, and had been expelled from his high school three days prior to the tragedy. If he was already a budding psychopath, all it would take is a string of precipitating incidents to set him off.  A closer look at any mass shooter is always baffling and complex: no two are the same.

And of course, it was super fucking easy for him to buy a big-ass gun in Florida.

If we begin targeting, monitoring, and marginalizing every weird, lonely boy in school, we are heading down a bonafide slippery slope which leads us ever further into dystopian dilemma of the 21st century America.

There are better ways to approach gun violence and reduce it if we all put our heads together and tap into our own affective and cognitive empathy.