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 extra vulnerable 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 or decenter Black voices, 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.]

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 and blames for society’s ills.

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 like propaganda 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/intellectual 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 loved ones) 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. Or letting the gen pop beat you to within an inch of your life.

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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Why people Autistic people 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.

 

On Neurodiversity 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?

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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.

How Night of Too Many Stars is ignoring half the spectrum

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No one on my row showed up. I’m that lame.

I had the wonderful opportunity (and early birthday present) to attend in New York City Jon Stewart’s Night of Too Many Stars benefit for autism (through NEXT for Autism). I was pumped to be attending a show that featured so many of my heroes in the field of sarcastic media – Stewart, John Oliver, Jordan Klepper, Colbert, and Samantha Bee. And in the very year I got my own autism diagnosis! It was a dream come true.

Or so I incorrectly assumed.

Once there I realized that there were no Aspies in the crowd. This was not for us; it was about us. It was all dudes who wanted to see Stewart back on stage and very rich, very white Manhattanites who were going to another charity function to assuage their privileged guilt. Before the ACTUALLY LIVE (not “taped live” which is an oxymoron) broadcast on HBO began there was an auction for various dumb prizes like sitting underneath Colbert’s desk with Jon Stewart during one of his monologues.

I had a bad seat where I could barely see the stage, The Roots not at all, and yet no one on my row showed up until over half-way through the program. I can see that happening if you’re going to your local symphony and dinner runs late, but this is LIVE television! What the eff? I was sure to give them dirty looks when they made me move from the end of the row that could see the stage. I grumbled something like, “Glad to have you join us.”

Millennials, am I right?

 

Everything got off to a weird start as Stewart was carried onto the stage by a guy who was supposed to be a CGI actor playing a dragon. HBO, Game of Thrones, get it? Olivia Munn seemed to get thrown by the live-ness of the event and flubbed her lines. In fact, everyone was nervous and awkward. Even the seasoned guys.

Welcome to my world, I guess.

The format was thus: A famous person would give a little speech or do a sketch and then they would show a touching video about people living on the spectrum and the struggles their families go through as they changed the stage and got the following act ready.

It went OK until they decided to put an actual autistic person up there. Carly Fleischmann is the first nonverbal autistic talk show host and she’s amazing.

Unfortunately what happened next was indicative of one of the problems autistic people face when going out into the world. They didn’t fully plan for her. At the beginning of the telethon they dropped a lot of metallic confetti on the stage and some guys swept up most of it as a video played. But not all of it.

When they rolled Carly out already at a desk, Stephen Colbert was going to let her interview him. But before the questions could start, Carly got up and began to pick up the missed scraps of confetti. The audience and Colbert seemed confused and embarrassed, but I knew what was happening immediately – she’s got OCD features and couldn’t NOT pick up the random scraps. They were sort of bothering me the whole time as well.

She was taken off the stage and an emergency, Oh no, this is a LIVE show, filler was put up. Jon Stewart later came up and spoke for a minute to the audience about how she had a “thing” about paper and picking it up and tearing it into pieces. He called himself an asshole for not being more thoughtful.

I don’t think Jon Stewart is an asshole for the record. He’s one of my all-time favorite people, in fact. He just doesn’t understand the need to ask autistic people, especially when you are bringing them out for a stressful live performance, about ALL their “stuff.” Triggers, obsessions, sensory sensitivities, and phobias. For instance, I was not really accommodated at the venue either.

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Like the “deadlights” in IT.

During show they occasionally cut to the audience for reaction shots, so they had these insufferably weird lights glaring on us through most of it. I missed a lot of the show and being able to see well because I had my program up to block the very painful glare. It didn’t seem to be bothering anyone else though. It made me increasingly upset as the show wore on. That’s the reason I was in the bathroom for Mulaney. This lack of consideration just highlights the fact that the organizers had no expectation of anyone on the spectrum being in the audience. Because why would a disabled person want to attend a cool benefit for people like themselves? Because they don’t consider people who can go to things to be disabled.

All in all, the autistic people they featured were “people with autism” as the caretakers of the profoundly affected and nonverbal would have you believe we prefer to be called. The tone was vaguely insulting and very pitying. Jon Stewart referred to us as “whole people” and I guess it’s hard for those not familiar with the hidden depths of the autistic mind to grasp that we are “in there” whether we are verbal or nonverbal. But still. It played to the biases of the allistic audience rather than having a verbal autistic person come up there and speak to them about the range of people on the spectrum who need support.

The autistic people who were being helped by this benefit were clearly mostly young and always visibly autistic. No verbal people were featured. There are hundreds of thousands of people with autism out there who are able, even forced, to hide our more visible symptoms and neuromotor agitation through training and powerful pressure on all fronts to seem “normal.”

We are also the spectrum people who are invisible to charity organizations. No one cares about Aspies. Especially if we are intellectually smart, but lack cognitive and social skills in other areas. Very recently there was a TEDx talk by Carrie Beckwith-Fellows about how smart, verbal autistic people are dying needlessly – because we are forgotten, no services are provided for us, and we take our lives. Please watch the below video if you have the time.

Here’s an excerpt from a recent article about our high suicide rate (emphasis mine):

“The researchers reported suicide was one of the leading causes of early death among people with ASD [At least 16 years earlier]. In fact, the researchers concluded suicide rates of people with ASD who had no cognitive disability were nine times higher than the general population. Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide, according to a report issued last week by the nonprofit organization Autistica.

The suicide rate is higher among girls with ASD and people with milder forms of the condition. The experts said that’s because this group are more aware of their condition and possible difficulties assimilating.

In addition, bullying can be a daily occurrence for people with ASD. Anxiety and depression are common responses to such treatment. Both of those mental health stresses are leading factors in suicide.”

People who were formerly diagnosed with Asperger’s Syndrome are dying in droves. The lack of support, recognition, and understanding is literally killing us. I know of no one in my life on the spectrum who has not been suicidal more than once. Including me. I have no proof of this because no one has done the research yet, but we are also dying early from lack of medical care (no insurance, anxiety about doctors), drug abuse, alcoholism, and the effects of neglect (homelessness, accidents while living alone). And, just as a side note, over 80% of spectrum women, even the verbal ones, are sexually abused in their lifetime.

Including me.

The world is a precarious place for autistic people no matter the age or ability level. I wish people cared what happened to us enough to include all autistic people in fundraisers, telethons, and discussions.

P.S. I am thankful that John Oliver brought up the problem of police brutality and Edie Falco mentioned that autistic kids at some point become adults. But here was the biggest nod in our direction:

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I’m telling you – those lights were terrible.

 

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.

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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.

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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.

 

 

 

 

 

Is it OK to “suffer from autism”?

Are we wasting time on semantics debates in the autism community?

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I’ve just finished plowing through a bunch of articles on the use of certain terms in the autism community that seem to set off flame wars on a regular basis. For instance, the person-first language debate between “person with autism” vs. “autistic person.” Parents often prefer the former and autistic people (obviously those retaining the power of speech) prefer the latter. Parents are concerned that if people refer to their kids as “being” autistic rather than “having” it, their identity as people with dignity will be infringed upon. Autistic people feel that autism is not a disease, but a much-needed identity in a world that has socially denied them a clear one.

But this article is not about that.

Autistic people suffer both directly and indirectly from the consequences of autism.

Recently, an autistic friend of mine wrote an article that mentioned the phrase “suffers from autism” as being insulting. Is it controversial? Yes. After all, it made me begin to think unceasingly (as I do) about autism and suffering. While I understand that much of the bullshit autistic people and their loved ones have to endure is due to living in a world that is uninformed, unsympathetic, and unaccommodating, a lot of it for some if us is a direct result of the condition itself. Autistic people do suffer; both directly and indirectly from the consequences of autism.

Some examples from my own experience might clarify this. A great deal of my personal suffering is because of the way the world misunderstands autistic people. Especially before I finally diagnosed myself at almost 40 year old. I was isolated as a child because teachers don’t have time to help out a kid who’s not fitting in. I was bullied because pre-Columbine, there was not much traction for anti-bullying programs or activism. Such that I only complained to a few adults before stopping altogether. I was always lectured by these adults on being sensitive to the struggles of those who were harassing me – “Her parents are going through a divorce.” – “He has a tough home life.” – “That’s just how his parents raised him.” My struggle was never the priority because adults simply didn’t want to put forth the effort to address a sticky, but far more serious than they suspected, “childhood problem.” I suppose they thought it would be over in a short number of years, but adults on the spectrum know that bullying only escalates after the school years are over and the stakes are much higher.

Clearly these difficulties are due to a lack of understanding and accommodation – including my own gross misdiagnosis for so many decades.

We mustn’t allow arguments over words and internecine debates to obscure the most urgent problems we face.

But we have to remember that autism is not just a mental condition – it affects many other systems of the body and this seems to be a little known fact in the wider world. As a young adult my mind was screaming to be released from the shallow neurotypical facade I had forced myself to produce due to the constant prodding from influences both personal and cultural. This led to increased gastro-intestinal issues which resulted in my being in extreme pain because I was digesting my own esophagus with severe acid reflux.

I suffered.

Years after this problem was resolved, I began to feel a little twinge of sharp pain in the end of my pinkie finger. I tried to ignore it but the pain kept increasing over time and eventually I was having nerve paroxysms so severe that the upper right half of my body was useless, the tendons in my neck and shoulder froze, and still no one could identify what the problem was – when they believed me about the pain at all, of course. Finally, through a charity organization (no health care) I was able to see a hand specialist.

I care less about the semantics and culturally-loaded terms used to describe ourselves and more about discussing the degree of suffering itself.

I had an exceedingly rare type of neuroma made up of an overgrowth of sensory nerves in my extremities. They tend to occur at the base of the skull, on the tympanic membrane, and under finger and toenails – anywhere there is a high concentration of sensory nerves. I don’t need to tell you that there is a direct connection to neuropathy and conditions of the sensory nerves in autistic people. This type of tumor is so rare that there has been little research on it and therefore it is not known if they occur more in autistic individuals, but several other members of my family on the spectrum have had rare nerve tumors in other parts of their bodies that caused extreme pain and required surgeries.

I can’t go into detail here about the excruciating five year process I went through, all the while unable to work or bathe regularly or function, in order to get these tumors removed. In addition to the other consequences of being mentally misdiagnosed. My fingernail had to be excised several times and the microsurgery performed to remove the overgrown nerve cluster required weeks of recovery every time. I’ve never found another medical description that emphasizes the quality of the pain of a condition like this one does. Most request the amputation of their fingertips and require psychological consultations for the mental effects of chronic pain. As did I.

 

So again, I really suffered. Clearly I have no problem with this phrase in reference to myself.

But is it OK for non-autistic people to refer to someone as “suffering from autism”? Perhaps not, but I’m a bit jaded after all this time. I care less about the semantics and culturally-loaded terms used to describe ourselves and more about discussing the degree of suffering itself.

One day we will learn to ride the delicate line between pathologizing and romanticizing autistic people.

I know from having met and loved many other autistic people throughout my life that they have some of the most hair-raising personal stories of any group of people. It’s worth noting that most of the popular books written by autistic adults are by those who have seemingly been more successful and supported than the majority. Far be it from me to get bogged down in the Comparative Suffering Olympics that stymie special interest groups from time to time – See white feminists vs. feminists of color. However, the autistics who are the most marginalized, impoverished, and challenged are rarely the ones with the support network and means to get their stories written and published and promoted. 

I don’t want to continue to gloss over the horrible experiences of autistic people. I want us to collect and share our stories with one another and the wider world.

Therefore, we are having our tales of injustice and medical malpractice buried along with our unique perspectives. I know as a woman and sexual assault victim (another loaded word I have no problem using), that those who want to maintain the status quo and not go to the trouble of understanding us or helping change the world to accommodate and protect us, want us to just shut up about our suffering. In fact, the demonization of the word “victim” is an example of that. When we tell our stories we are accused of “being victims” in order to defame us as being “too sensitive.” Assholes don’t want to acknowledge that broken institutions and predators cause great suffering for people of different demographics and circumstances. They definitely don’t want you going into the details of your ordeal to bring a personal, human face to certain societal issues.

This is an invitation to silence that must shouted over.

I don’t want to continue to gloss over the horrible experiences of autistic people. I want us to collect and share our stories with one another and the wider world. The disabled and neurodiverse are the most impoverished demographic in America – indeed in the world. We are the most sexually assaulted and exploited.  We are still fighting for jobs, reasonable medical treatments, and accommodations. We are dealing with stigma and fear. We are even gunned down by police regardless of race. Semantics can go on the back burner as far as I’m concerned.

One day we will learn to ride the delicate line between pathologizing and romanticizing autistic people, but we mustn’t allow arguments over words and internecine debates to obscure the most urgent problems we face.

What the hell do people think of me?

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I’ve always wondered what people think of me. Not being able to gather enough information from body language and tone of voice can make figuring out whether I succeeded at a social interaction difficult.  Some people speak in passive aggressive modes. They do it to get their rocks off by slyly insulting a socially awkward person. Often these folks who walk among us are either small, bitter people or they fall somewhere on the sociopath spectrum. And yes, there are plenty of other spectrums. Some spectrums can have overlapping symptoms, but the point is that these weak bullies are assholes no matter the reason.

Sometimes when I meet a new person it goes very well, and some people dislike me on sight. A bunch of acquaintances in the same room can have vastly different impressions of what I’m like or what type of person I am. While one person thinks I’m a slut, another will think I’m unsuccessful at getting laid. Somebody will think I’m a bona fide intellectual, usually someone else who reads a lot of books, and another person will think I’m using big words and talking about certain subjects because I’m trying to prove I’m smart when I’m not.

These are often hipster poseurs. They haven’t put the time and personal sacrifice into being tiresomely over-educated. They haven’t done their homework. They’ve been hanging out and perfecting the art of looking cool and defining themselves by what genre of music they’re into and buying spectacles with non-prescription lenses.

Whew! Got a little rant-y there. I’m bitter about some things too.

I’ve worked out why this happens, but it took me a while. I don’t fit into any easily recognizable social tier. I’m un-pigeon-holeable and not good at conforming enough to put people who do have a group identity at ease. I’ll admit oddness can definitely be unsettling whether you can help it or not. What happens a lot of the time is someone will begin to project their personal insecurities onto my vagueness. This can cause a shitload of problems for me and confusion for everyone involved.

This is what it’s like to have a social communication disorder rather than a verbal communication disorder. It doesn’t necessarily mean I can’t make myself understood, but intentions get lost in translation. In both directions. I don’t know what the hell people want from me or expect me to be like. Subtext is hard to grasp in conversation. Also, the way I look doesn’t exactly reflect my mind or personality. I’m a cloud of boobs, lips, and blond hair in the body of a late 20s (early 30s?) Southern girl who giggles a lot. Inside my head I’m a sarcastic middle aged dude who wants to hang out in his study and solve problems. How incongruous.

In summary:

I’m like patchouli – everyone has a strong opinion about me in either direction. Those who dislike me are adamant about it, and those who love me are zealous and super-loyal. But my fans are certainly in the minority.

 

 

 

 

Different, but not uncommon

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On some level I, my friends, family, teachers, lovers, co-workers, bosses, classmates, bullies, et. cetera have always known that I am different in some strange and fundamental way. I was mostly normal, if a bit stoic, before I went to grade school. I was showing signs of precociousness.  After I began school I learned I was the stereotypical nerd, only in doll-faced little girl form. I was overlooked. It was the early 80s and Asperger’s wasn’t as on the map.

Before I sought an official diagnosis, I had certainly heard of Asperger’s Syndrome. I’m a culture and science buff after all. Many beloved American folk characters are Aspie stereotypes (and all of them are male), but I always knew I skewed heavily in that direction. My parents and teachers discussed it as a possibility at one point, but no one wants to admit their child is impaired when there is some giftedness to focus on. My abilities were praised and my deficits blamed on me or ignored or rationalized. I can hardly blame them for this.

Here’s one example of how I was put off the scent for so long:

Around the turn of the century I was in an intense teacher training program at college. I was going to teach high school English. One day we went to a presentation at S       , a rehab facility that also does a great deal of good work with autistic children. It was given by a woman who works with (boys) who have Asperger’s. She gave us the run-down on the symptoms and characteristics and showed us a film of the music therapy she was doing with one boy.

It was an immediate revelation to me. For about an hour. After she was done speaking I piped up like I do and started telling the class, visibly trembling with excitement, how that completely described me as a child. I fear I monopolized the discussion and made it about myself. I buttonholed the presenter after the class was over and followed her into the elevator, getting more talkative and enthused.

She was not responsive. She had one of those inexplicable looks on her face that I later interpreted to mean that I was off-putting. She told me that I was probably not autistic. She dismissed me rudely. She seemed to think that I was just some narcissistic chick who wanted attention, even though the behavior that she, and the entire class I later discovered, found irksome from me was a clear sign of Asperger’s in itself. I think, at that time, it was considered extremely rare for girls, and definitely not women, to have this poorly understood syndrome.

Less than a month later I got a letter in the mail requesting that I come into the Dean of Education’s office to discuss some “concerns” they had. The semester was over and I had done well on my projects and made excellent grades. All A’s and a B, I think. But the stress of this “boot camp” style, back-biting competitive program was inappropriate for me or any other student who pays money for a fair education. At the end of orientation the director told us “Don’t ever cry and watch your back.” I failed to do both. So I’d begun drinking heavily mid-way through the semester to deal with the 10-hour days of combined student teaching and going to my own classes in addition to severe sleep deprivation and the inexplicable mental agitation I always felt then. In addition to the stressful hours, I was assigned to a “mentor” teacher at D            . She openly abused and belittled the children in her class while she sucked away on fentanyl lollypops. She called individual students “stupid as sin,” and “losers.” She wanted to teach the class, “Little Black Sambo” she told me. I literally cannot make this shit up, but I was reprimanded for “stirring things up.”  The education program directors were angry that I told them about it, as was the principal of the school.

This was only one of my “mistakes.”

Subsequently, I got a DUI one night and had no idea whether to disclose this to the professors running the program. I asked my parents and a lot of other people what I should do, and they were as stumped as I was. I decided to let it ride because the instructors were pretty condemning of the black student’s “drug-addicted” and “irresponsible” mothers. I should mention that this program was racist in that subtle, insidious way that white people who think they’re over their hang-ups are. I found a lot of the comments about and methods of studying “inner-city” kids to be offensive. As did a few of my black classmates who were smart enough not to mention it.

Also, teaching is still one of the only professions where “moral turpitude” is a reason for dismissal. Imagine if that was the standard in Congress! But they eventually found out about my drinking because the women in my study group had ganged up on me and were calling one another on the phone to talk about me. They confronted me, with great hostility, about a meeting with them that I had missed while I was waiting to get bailed out. They went to the program director after I blurted out that I’d gotten a DUI. I can still see the looks on all their faces.

If looks could put you in prison, I’d still be there.

Of course, the powers that be were furious I hadn’t told them. Not that I had any legal obligation to do so. I’m pretty sure they would’ve been condemning no matter how I’d handled it. It was my second DUI.

So when I went to the office, two of the program directors had difficulty voicing exactly why I was “in trouble,” but thought I “wasn’t enjoying teaching” and they “had concerns about my commitment.” I explained that I had recently been ( and incorrectly as it happens) diagnosed with bipolar disorder. They were clearly unsympathetic and “suggested” that I do extra student teaching at W         A                 S          . Actually I was required to get a teacher there to sign a form confirming my hours before they would allow me register for my last semester. I’m pretty sure it was unethical and illegal to do this, but I didn’t know that and I was mortified, and, as a dirty drunk, who was I to judge?

I got the message loud and clear that they didn’t want me teaching children, that I was an unacceptable person altogether.

But I had invested so much time and money in this major after trying and losing interest in several others. So I went to help with the after-school program at W          . It turns out this was a punitive assignment. The “after-school program” was detention for students sent there for disciplinary and behavioral problems at a school where all the other public schools sent the delinquents. The worst of the worst. It worked. I completed my hours, but was too ashamed and angry to go back to the student teaching program, instead just finishing my English degree in nonfiction writing without the degree in education.

Most likely they were put off by my odd, youngish manner and inability to command the attention of classes full of students who looked and sounded older than me. I had been at odds with their attitudes and had made multiple comments they thought were inappropriate (but true). I was piqued by the insistence of teaching total inclusion of special needs students in the regular classroom. I believed then, as I do now, that some kids (like I was myself in grade school) need to be taken out of the regular classroom sometimes and given extra attention and enrichment to deal with our differences. They balked at that quite a bit.

Ultimately, my own developmental issues were the direct cause of their “concerns,” but they never once followed their own advice and put the welfare of their student, me, at the forefront. They were never honest or clear about why they thought I was not equipped to teach. This was yet another missed opportunity for me to get help. I was ashamed I had even suggested I had Asperger’s at that presentation.

This incident put me off the right path for another 15 years.

During that time I was raped multiple times by multiple people because I can’t always read people’s intentions and personalities. I unconsciously mirror body language and conversational tone as many autistic women do, and when a man is flirting with me I don’t realize it and I can send the wrong signals without meaning it. They think I’m good to go even though I only want someone to talk to and I’m copying them. If had known about my differences and tendencies, I would have understood how I was vulnerable and how to keep myself safe.

I continued to flail around the edges of society, looking for a good fit, a comforting group identity to wrap myself in. In all that time, no one ever reached out to me or tried to get to the bottom of my dysfunction, not even the people who love me the most.

Despite horrifying clues like this, the DSM-IV and common ideas about Asperger’s just didn’t quite fit. Lack of empathy? Robotically repetitive behavior? Strict routines? Unable to make friends or have a conversation? Doesn’t like fiction? Likes to memorize train schedules? Great at math and computers? Male? Nope on all counts.

So I concluded that while I certainly had the general nerd stigma and social delays, I was entirely to blame for my considerable difficulty controlling my emotions and completely failing to manage stress or succeed in life, my relationships, or college. I was diagnosed with everything from bipolar to unipolar to psychotic to “unspecified personality disorder” to PTSD. None of those fit at all. There was a lot more going on than depression or anxiety alone. I’ve never been manic. I’m the opposite of psychotic. I couldn’t break from the vividness of reality even if I tried. And I have tried.

I surmised I suffered from CCD or Crazy Cunt Disorder. Some sort of amorphous, shameful female hysteria. I grew to loathe myself and ceased to care about what happened to me. A lot of other unfortunate things happened to me because of this and will be detailed in my (bitchin’) book.

I felt I was broken and despicable and ridiculous and weak. Other people had a lot of challenges and still succeeded – why couldn’t I “buck up” and “deal with it.” If I’m so smart why can’t I figure it out? But mostly, when asked by the few head-shrinking Pez dispensers who bothered, I reported always being highly mentally agitated for no discernable reason. I, to this day, have no words to adequately describe some of the hellish, altered mental states (though totally without delusions or hallucinations) that I have periodically weathered since childhood.

“Pernicious dysphoria” comes close. Like some ultra-crippling anxiety disorder that won’t let up. After a while I deduced that the deep, black bouts of depression I have are because I’ve become overwhelmed and exhausted from a life change or tragedy or new job and I can’t handle nearly as much interaction as other people.

Jobs break me down in a matter of a few months. I can make a normal first impression and get hired. I do a great job and work hard, but I keep getting more and more tired on a regular full-time schedule.  I stop eating and sleeping and I shed weight. The miscommunications build up and I am made to feel less and less welcome wherever I am. I’ve only been let go three times, but I usually see the writing on the wall and quit before they can come up with a reason to fire me. One time I had a letter of resignation in my pocket when I was called into my boss’s office to be fired. I can’t even do part-time anymore because I’m too afraid of being overworked and/or bullied.

Bullying doesn’t stop at high school graduation, by the way.

Social misunderstandings and faux pas are the hallmark of my life. I don’t see ephemeral social constructions like company hierarchies and gender expectations all that clearly and that obviously leads to problems. I don’t know unspoken rules of appropriateness or dress. I can pretend at work, but eventually my “mask” slips a few times too often and they figure out I’m a weirdo or not the “type” I presented myself to be. People project their own insecurities on someone they can’t clearly define and my superiors begin to watch me closely for more mistakes which makes me nervous enough to oblige them.

I am darkly familiar with self-fulfilling prophecies.

For the longest time I purposely self-medicated with alcohol and thought my pathological awkwardness was due to being intoxicated in unstructured social settings. After four years of sobriety (but not tee totaling), I am utterly alone and feel less confident in my ability to have relationships with people and enter social settings. My mental agitation still plagues me, as does my insomnia. I have too many crimes and employment gaps to get a job that comes close to my skill set or will pay a wage that will free me from the control of my parents. Besides I’ve got no references and my former employers dislike me. It’s mutual.

So here I am, trying to write myself into a better story.