Why I’m still upset about my ASD diagnosis

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

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

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Isolation screws you up.

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

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

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

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

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

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

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

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

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

 

 

How 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.

 

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.