Aut of Spoons is a lady after my own heart. Here she explains EXACTLY what it’s like trying to pass and function as a “high functioning” autistic person. We can “pass” for normal just long enough to convince every institution designed to help people like us that we don’t actually need help. There is no temporary respite for people with variable functioning levels in America. Please enjoy!
I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.
I can generally pass for neurotypical. I can be independent. Until I can’t.
There are two ways that this comes back to bite me in the ass: one is in…
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.
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 ableism. People 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.
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.
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:
The need to be in control of what is happening to us and our environment
Difficulty understanding and immediately responding to questions or commands
The need for medications to be administered in a timely manner
Not understanding unspoken rules
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.
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.
I had a bad April, folks, and I’m glad it’s about over.
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.”
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.
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 init. 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.
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.
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.
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.
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:
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.
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.
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.
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.