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.

 

 

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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Super Dark Times

I had a bad April, folks, and I’m glad it’s about over.

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The last day of March I was really feeling my oats and had a wonderful, productive day. It was one of those days that make me glad I’m still around. But in my experience, no good day goes unpunished.

Easter fell on the first and therefore was also April Fool’s Day. It was also the day my grandmother began to actively die. My mom called me up in a panic and said we needed to get her to the emergency room from the assisted living home she had recently moved into. For some reason the home couldn’t authorize it and there was some confusion. For someone with acute emotions, I can usually rise to emergency situations by shutting down somewhat and saying to myself, “Well. I guess this is happening. Ride it out like everything else.”

I got her to call an ambulance (I wasn’t going to transport both of them) and drove us to the hospital, as her car was totaled the week before in an accident she was lucky to survive. When my grandmother arrived, they let her lay around without being seen even though the place was deserted because no one gives a shit about really old, sick people in America. She was in horrific pain from an infected spleen (a complication of leukemia) and they took their damn time in making her comfortable. It was clear to me that she didn’t have long at all. My mother and I decided to not proceed with any drastic life-saving measures.

The next day I worked as they moved her into hospice care. After work, I logged onto Facebook (they’ve had a bad month too) and saw that my penpal and writing partner had died in the middle of my wonderful Saturday from an apparent heart attack. I’d been in a tif at him over a recent piece he’d sent me to critique. Long story short, he was going to publish something beneath him that didn’t paint him in a good light. He cared only about the truth and didn’t consider how it would affect his public image. I tried to be gentle, but he took it hard. So did I. His last post on Facebook was uncharacteristically gloomy and hopeless, but I never got around to reaching out to him because I was being petty, as it now seems. His heart gave out, but I’m certain his mental state was a factor.

Sometimes the Universe taps you on the shoulder and whispers in your ear, “You’re still an asshole.”

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Later that evening, my mother texted me to say that my grandmother had passed away.

I guess I’ll point out here that April is also Autism Awareness Month and both my penpal and my grandmother were on the spectrum. I want to write something profound about the similarities and differences of their deaths, but death is just messed up and sad no matter what your brain is like. My grandmother had been depressed, lonely, and far more ill than we had suspected. She was terrified of being alone, but too socially anxious to go to a facility where she would have to meet new people. It was hell for her and it had gotten to the point where I was too emotionally overwhelmed by the anxiety she projected onto me to look after her anymore.

My penpal was going through a divorce and striking out on his own again. We met at the Inaugural Southeast Adult Autism Symposium last year. We hit it off instantly and I was attracted to him. Although he was older than me by about twenty years, we were intellectually simpatico and his energy felt good. We started corresponding (he’s in Atlanta) and I really wished he was with me on my phantasmagoric New York trip. He used to live there. He was working again, as was I, and I was looking forward to hanging out at a conference later in April as we’d planned. He swore to me the last time I saw him that the next time we met we’d both have jobs. I was doubtful, but damn if he wasn’t right.

I skipped out on the conference.

I suppose the difference between them is that one lived long enough to suffer and one suffered enough to die. God save us from dying too young or dying too old. From dying too swiftly or dying too slowly.

I had a bad meltdown the next evening after it all sunk in. I got into some old brown liquor I found in the back of my freezer. I hate brown liquor (it was for a recipe really), but I was beyond caring. I went into a walking, raging black out. I’m sure I left some messages on my penpal’s voicemail that are pretty epic. Somehow I ended up locking myself out of my house buck naked, but somehow still (presumably) holding my cellphone, because I woke up in my parent’s spare bedroom sans the bed. (They don’t have a key to my place, so I ended up there). I was in some random clothes that didn’t fit, lying on a pile of broken picture frames and dust bunnies. I had to pick some staples out of my arm.

I was the sickest from a hangover I’ve ever been for the next two days. I didn’t make it to my grandmother’s funeral. I had a few abrasions and the power on my block went out for some reason, but I’ve had much worse meltdowns, just not in a while. Only in the last week have I felt a bit better.

It’s been a slog.

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Other shit happened this month, but I will only mention one more thing because it’s the least boring and most believable. A semi-famous Scottish author I hooked up with in my youth wrote a memoir about his time living in America and I’m in it. It’s not flattering (or accurate), but he was a #MeToo creep and I was going through the most messed up stage of my life. I guess the lesson is don’t have “empty sex” with a globe-trotting douchebag and then poke around on his author page years later.

Happy May, people.

 

 

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.

 

 

 

 

 

 

 

 

Should kids know if they’re on the spectrum or not? – A Dumb Debate

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Cogito ergo nerd?

I keep seeing versions of this same argument come up in conversations – in RL and online- “I’m actually glad I didn’t know I was Aspie until I was old(er): It forced me to figure out how to navigate the world, interact, and not depend on others. These kids today are so spoiled and sheltered. And they have to deal with the label early on in life. So should they really be told?”

I can entirely agree with the spirit of this statement. I am also proud of how I wasn’t coddled and had to tough it out and figure out who I was on my own. It helped to teach the endurance, passion, and hard-won skills which allow me to be the person I am today. Perhaps even a useful person. A person I now love and respect a little more every day.

A case can be made for some parents and institutions not demanding enough out of spectrum kids as they grow up, not pushing them out of their comfort zones, and generally keeping them away from any tough learning experiences. They are sheltered and over-fond of video games, so the stereotype goes.

At the same time, this is one of many arguments which stem from a position of privilege. Every one of the people who’ve offered this one up are employed (or male) and lacked certain impairments that I did, with which many other late-diagnosed people have had to suffer. For some people finding out is more of an intellectual exercise or fascinating fact about themselves. My version of autism, however, proved significantly dangerous and disabling to me – mostly from not knowing why I was vulnerable or who I was.

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Here’s your problem.

I am aware through my own life experience of a hidden population of unidentified and misdiagnosed autistic people – most on the high IQ part of the spectrum. That’s (one reason) why there’s so many more autistic kids now. Many above a certain age were too old to have been diagnosed. And a lot of those I’ve stumbled upon in my life are now dead, dying, or totally off the grid. It’s entirely possible they’ve changed their names, but not necessarily through marriage. Several died quite young. Most have had addictions and employment problems. Nearly all have been sexually assaulted or arrested. None of us has ever received any type of assistance or appropriate healthcare. As I’ve pointed out before – we suffer needlessly.

So while some people came through their ordeals with Purple Hearts and swaggering independence, others desperately needed an intervention early on. It all depends on what resources you had and if they were enough. I have always been essentially who I am now, as far as character goes. Sometimes I strayed from my real self and tried to be edgy or adopt a different persona to fit in, but I was born an innately ethical, highly-motivated marshmallow.

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Me from birth.

So I didn’t need my fucking life to be a long series of superfluous character-building exercises. I would’ve been a perfectly alright person without a lot of bullshit to survive. I didn’t necessarily need to learn everything the hardest way. I could’ve done with more coddling and less rape.

I wish I’d known is what I’m saying.

I think the best idea is to identify spectrum kids early on. Since there is so much diversity in the autistic community from individual to individual – what a child is told about their condition and when should be determined on a case-by-case basis. Some kids might be in a good enough place to be told and some may be very emotionally unstable – this is for a team of compassionate adults to decide. Yet whether a child is informed about their ASD or not shouldn’t stop their doctors, parents, and teachers from collaborating on how to help them best to learn, adjust, cope, and gain life skills.

That’s why we in the autistic community need to continue to educate clinicians, educators, and the general public about all the various presentations of autism in an individual, young or old, so they can get a proper intervention and be safer in public. NOTE: WHO should tell a person about a suspected diagnosis is an ENTIRELY different debate.

 

 

 

Coming soon.

Why I’m still upset about my ASD diagnosis

Mad BBA little less than a year ago I had the most devastating, fascinating realization of my life – I am autistic. Yes, I’m “high-functioning” meaning I have no intellectual disability and retain the power of speech, but my autism (formerly called Asperger’s Syndrome) is not mild. It affects my moment-to-moment life every day in ways I am still discovering. Moreover, my condition has affected the long-term course and events of my life tremendously and will continue to significantly affect me the rest of my days.

In the fall of 2016, I had come to a point in my life where the mental healthcare establishment had seemingly given up on me and I on it. I’d been put on every psychiatric drug and combination of drugs imaginable and had not been helped, and in many cases hurt, by them. No amount of talk therapy could get to the bottom of why my anxiety was so unconquerable, why I was unable to “get my shit together,” or why I had so much trouble forming and maintaining relationships with other human beings.

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Isolation screws you up.

The sad truth is that psychiatric medicine is still very much a “trial & error” field. A person comes into an office and describes a vague constellation of symptoms that are nonetheless crippling, and whatever new psych med the drug rep dropped off will be prescribed for anxiety or depression, and ALWAYS, ALWAYS at some point, bipolar disorder.  Yet if what you have is an inborn neurodevelopmental disorder, a drug that only deals with biochemical imbalances is going to have limited benefits and frequently will instead make you sick or exacerbate negative symptoms.

If doctor after doctor keeps taking a crack at fixing you, and you never improve, at some point the medical system will blame the patient. I’ve been told in more complicated terms that if I would just be less weird and learn to “deal with stuff” I would feel much better. If I just decided to improve and looked on the bright side, I would no doubt be less afflicted. If I would simply “get my shit together” and look after myself more competently, I wouldn’t feel overwhelmed. I just needed to “get serious about getting better.”

Obviously, in the light of an autism diagnosis, these are uproariously insulting suggestions.

I always thought, “Decide to be better? Deal with things? Stop being so odd? Why didn’t I think of that?!” But of course I had. It was all I thought about: how to blend in and not draw negative attention to myself and my challenges. I didn’t even consciously know how much I was exhausting myself in order to be, or at least appear to be, happy and normal. After all, I didn’t understand that I was experiencing life differently from most other people, because at no point had I ever looked through the eyes of a “normal” person. It was outside my experience, because I was born different.

So this is what happens when you grow up unwittingly autistic and female:

  1. I was taught to mask autistic behaviors. Not on purpose and not just by my family. More than we can know from being immersed in our own culture, little girls are taught to carry themselves differently from boys, to move around less, and to stifle certain body movements, “inappropriate” humor, or interests that do not fit with the proscribed roles of females. If a little boy takes off his shirt while playing on the playground, it’s not that odd, but if a little girl does it, it’s an incident. If a little boy wants to play with Hot Wheels or make fart sounds or tell gross jokes, it’s just boys being boys, but a girl will be harshly reprimanded. The world is more of a minefield of potential social faux pas for a girl than it is for a boy, and so teachers, parents, and normally developing peers will nag, tease, shame, bully, or punish any behavior that is not seen as “fitting in.” This is dangerous.
  2. When you are taught to mask, you are robbed of your true identity. Because I was not allowed to be as pedantic, vocal, fidgety, gross, eccentric, rigid, naked, or “masculine” as I wanted to be, I began to collapse in on myself. I was reprimanded, rejected, and shamed from many directions, so I learned to “hold it in” so I wouldn’t “get in trouble.” I became stoic, but anxious and suicidally depressed by the age of only nine or ten. We teach boys to lash out at bullies and those who contradict them, vocally or physically. We tell boys they have the right to stick up for themselves. So autistic boys become conduct problems when they begin to have conflicts with peers, but girls are taught to be quiet and well-behaved at all costs, and to look to themselves for fault first. We lash in, not out. So as time goes on, unidentified autistic girls begin to internally torture themselves for being odd and friendless, and we become dangerously mentally ill from not being allowed to be mentally different. By the time I was  a young adult, I was deeply confused in a way that only others who have to hide their basic natures and mannerisms can understand – LGBTQ people, for instance, suffer the suicide attempts, self-harm, eating disorders, estrangement, and addictions that many undiagnosed neurodiverse individuals also experience in young adulthood. I myself became a promiscuous binge drinker who self-harmed to relieve the immense internal pressures I couldn’t identify. My true self was screaming to be let out.
  3. You are gaslighted by everyone in the world until you break. I was continually told that when I was overwhelmed by events and situations and phobias, I was being dramatic, or looking for attention, or exaggerating my distress even though I knew I wasn’t. When I had what I now know are meltdowns, I was made to understand that I was just weak, hysterical, and, again, not trying hard enough to be normal and control my responses. I was “making too much of things” though I now know I should’ve been much more insistent that I was unwell. Since the majority of those in your world are not autistic, they don’t understand that you can’t “just ignore” certain distressing sounds, tastes, or sensations. It does not take very long for you to begin denying the veracity of your own perceptions. I also couldn’t filter out the moods of the people in my vicinity either. There is some unplumbed ability that many autistics have that enables us to “sense vibes” from other people. Though I have a difficult time reading facial expressions and extrapolating the reasons for others’ emotions and behaviors, I can physically feel the overriding emotional tone around me. When I had a teacher who was angry and dissatisfied, her mood and anxiety would leech into me even if I understood that she wasn’t angry at me specifically. The same goes for the workplace. If it’s a tense environment and I can’t remove myself from it, it will infect me and no amount of positive self-talk or relaxation exercises can change that. I’ve tried. I feel everything and everyone it’s often too much, which is why I isolate. Essentially, you aren’t gaslighted by a single abusive person or a bad family; the entire neurotypical world does it to you and you begin to automatically doubt your senses, impulses, and survival instincts. This is also very dangerous.
  4. Masking teaches girls to be unquestioningly compliant. I was being asked, from a very young age, to constantly sublimate my needs and ignore my level of discomfort in order to make others more comfortable around me. For instance, when I was old enough to get a driver’s license, I didn’t have any interest in driving – I wasn’t ready yet. This is common for a lot of reasons in autistic people. Yet, I was not given the option of holding off on driving because my parents were tired of schlepping me and my sister to school and activities. It might have been less stressful for them, but being expected to drive introduced a great deal more anxiety into my day to day. My needs are not as important as other people’s, is the lesson I internalized and have yet to unlearn. When situations got more risky after leaving for college, I was unable to assert myself at all. I’d never been allowed to say no. I didn’t know my comfort level even mattered. Like many Southern women I was taught to serve others, make guests comfortable, and never be argumentative or contradictory. So I found myself in situations that were dangerous, and had no idea how to extricate myself to a safer place. I pushed my own limits to the point that I would melt down and fail to keep my responsibilities. I still have a difficult time coming up with the words to refuse a request made of me. This is one of several reasons why over 80% of all autistic women, even the smart “high-functioning” ones, are sexually abused, assaulted, or exploited.

These are universal issues for many women and men on the spectrum who’ve lived undiagnosed into adulthood. The thing that makes me the most angry besides the above is that because I flew under the radar for so long, I wasted over half my life in extremis. In deep isolation. In jail. Exhausted. Trapped in my own loud, garbled mind. Close to dying or wishing for death or begging for death to wait.

My diagnosis set me on a path of grieving for the time and the self and the life that I lost. I’ve stayed up nights playing the “What If?” game. What if I’d been born later when there was greater awareness of Asperger’s and autism? Would I have been identified or not? What if I’d been accommodated from an early age? What might I have accomplished by now? What traumas might I have avoided? Who would I really be? Where would I be? Would I have money and respect and a job?  Would I have a family? A husband? A real best friend? Would I be better off, but a worse person? It goes on and on.

Mostly, I’m angry that I’m still alone. I’m afraid I will have to make my peace with living apart from others, mentally, spiritually, physically, and socially. I’m afraid that knowing these things about myself will not improve my situation. I’m afraid no one will ever deign to help me. I’m afraid of the inside of my head. I’m afraid I’ll never find my people.

 

 

How neurotypical women are a huge problem for autistic women

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What a friggin’ weirdo!

For most of my life I have been an observer of normal girls and women in order to figure out a way to not make them uncomfortable and perhaps even make a friend or two. I typically fail at this.

 

Most autistic women, regardless of where they are on the spectrum, have the same problems with neurotypical women: they don’t like us and find us confusing and very annoying. This results in bullying, gossip, and subsequent shunning. You become a pariah and a ghost at the same time.

I’ve always been the first to admit that, whether one can help it or not, it’s not cool to make other people uncomfortable. Annoying is annoying. This is a main reason autistic people isolate themselves. After so many failed attempts at forming connections with peers, we give up and would rather avoid the criticism and pain. But we need a supportive network of relationships and validation just like any other human, even if it’s more difficult for us.

Around the turn of the century, I thought I had finally met a group of women who would accept or at least tolerate me. While some of them liked me, others in the group, let’s call them the “Gin Tuesday Ladies,” were less enthused about me being included in their boozy gatherings. No matter how hard I try to be normal and engage with NT women, I never get it quite right, I inadvertently say things that are inappropriate, I trample their boundaries, and my reactions and interests are not acceptable. I don’t get them any more than they get me. Eventually, I’ll do something that is either misconstrued or a deal-breaker and it hurts horribly every fucking time.

facepalm2
Dammit – not again.

Most spectrum women have the same problems as I do with normie women and girls.  When I began reading about the consequences of oppression and the gender expectations applied to women, the reasons for this sad pattern began to come into focus.

It’s no big secret that little girls and little boys are socialized differently. The result of this is that men define themselves by what they are good at and the content of their character; women are defined by their relationships and who they are on the surface – both physically and socially. Aspie women are amazingly accurate observers of typical females. This increased ability to “figure out” how to behave and show empathy is NOT because our neurology is significantly different from the guys and we are born with better social aptitude. (This is matter of great contention.)

Being kind and socially adept is the culturally imposed core of female identity. Aspie women systematically study how to converse and help others like our lives depend on it – because as women our survival does depend on our ability to conform to social norms and build relationships.

Isolation puts women at significantly greater risk – physically, emotionally, financially.

So how women and girls are supposed to look and act is very proscribed and enforced – by our families, teachers, peers, the media, and especially other women. For instance, the phrase “She think she cute.” The biggest faux pas a woman can make is admitting out loud that she considers herself smart or attractive. Men can brag on themselves (See Donald Trump, Kanye West) and not suffer consequences, but women have to be consistently self-deprecating. Women get their hackles up when they see another woman bucking the system and deviating from our acceptable roles (See Hillary Clinton.) Self-esteem is OK; ego is verboten.

Autistic women don’t care for gender conformity. We can’t see the sense in it. We don’t recognize arbitrary psycho-social constructions. In fact, I’ve always been able to perceive that the nasty things women do to one another is a result of how we are shit on as women in general. Boys are taught to stand up for themselves, express anger, and confront people who give them problems. Girls are taught to be unfailingly agreeable, say the right things, and never openly show negative or assertive emotions.

oddgirl
Just read this.

We’re don’t feel free to confront one another about differences and disagreements. We are allowed to judge, sabotage, shun, and be passive-aggressive. Women bully one another in different ways and tend to keep the girls they don’t like in their social groups because – well, I’m still figuring that one out. It’s complicated.

 

I’ve totally fallen out of favor with the Gin Tuesday Ladies, just like in every other group I’ve tried to join. (Hence the title of this blog.) On our closed-group Facebook page I called out a member for being historically harsh to me about my mental illness and differences. She is an extremely neurotypical woman and I’ve always known that she’s not crazy about me. I’ve learned to spot “shade” when it’s thrown in my direction and she’s tossed a metric shit-ton of it.

The final straw for her was when I had a meltdown at a restaurant where we were both employed. While at the time I didn’t understand why I totally lost it and yelled at a table of genuine deplorables at the end of an insanely busy night, I do understand why she and the other Tuesday Ladies were upset about it. I was a liability to the organization they worked for. I was giving the place a bad reputation and potentially scaring away business and their tips. As usual, I apologized profusely to them.

After that incident, I sought an explanation for my emotional and behavioral problems and involuntary meltdowns. I was (incorrectly) diagnosed as having bipolar disorder. One evening we were both at the Gin Tuesday Ladies’ meeting place, The Gherkin Jar, and none of the other Ladies were there. Begrudgingly, and because women in the same groups are obligated to try to get along, we sat and had a conversation. It consisted of me attempting to explain how having “bipolar disorder” made it difficult to control my emotions, be less annoying, and act more normal and her shooting me down. She was kind enough to hear me out, but she was pretty condemning of mentally ill people in general. She didn’t understand why I couldn’t just get over it and handle my shit like an adult. She said all the typical things that reflect the stigma that those with neurodevelopmental conditions and mental illnesses face.

That conversation cemented for me the pervasive awfulness of that stigma.

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Now she works with the mentally ill, and, to her credit I suppose, raises money for NAMI, the National Alliance on Mental Illness. (Please donate if you can.) But she hurt me deeply and things were never the same after that. The Ladies pulled away from me and I from them. I became more aware of how many of them thought of me as a freak to be tolerated because our de facto leader, Denise, saw something special in me. But I noticed none of them reached out or seemed to connect to me like they did with one another. A common enough trend in my life. I was so embarrassed for myself that I never attempted to fix these friendships. I wouldn’t even know how.

You see the irony of her career choice, though. I sincerely hope she has a better opinion of people who struggle with invisible disorders and mental conditions. Unsolicited apologies are nice, but rare. I have to admit I’ve not looked at the Facebook replies yet from the other women in the group. Too chickenshit at the moment. I don’t want to ruin my day because I have this feeling that they will not have my back – they’ll have hers because she’s central to the clique and I’ve drifted away.

Like defends like. Neurotypical women have a tendency to gang up on eccentric women with poor social skills. When I build up the courage to see what they said, I’ll certainly post an update.