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.

 

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.

Why Temple Grandin bums me out

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At least I got a good seat

A week or two ago I went to Knoxville for a free opportunity to see the Grand Grandin Vizier of American autism. (Played by Clare Danes, of course. It seems obligatory to mention the award-winning TV movie about her). I had seen her lectures on YouTube and read her many contributions in books about Asperger’s and girls OR Asperger’s and employment. We have the same ideas about the types of jobs that would be nice for us to have if there were more of them.

I was so excited to get out of town for a day and find out what new things she had to tell us about ourselves. The place was packed. The overflow was 500 strong, but because I was there early I got to see her in the flesh.

By the end of the Q&A, I was livid. It took me a minute to figure out why though.

First of all, Ms. Grandin just gave the same stock presentation about “thinking in pictures” and showing her upgrades to a cattle death machine and her functional MRI pictures. Then she berated boys who are into video games as she typically does.

Nothing new.

Secondly, the Q&A was a bit haphazard and perhaps not the best format for someone with her auditory processing difficulties. As far as I can tell she has never directly or satisfactorily answered an audience question. She would mis-hear the querent and then go off on an unrelated tangent she knew more about. Adorably, one little boy, the first one, came up to the microphone and asked her if she likes bugs. He never got an answer even after he asked a second time. Perhaps they need to give her written questions from the audience beforehand.

When non-autistic Americans think of adult autism they think of Temple Grandin and that’s a problem.

But that was merely annoying and not the thing that set me off. I watched person after person go to the microphone in front of her to ask their boring questions that she never answered. Several of the querents were little boys conspicuously dressed like Young Sheldons who had good questions, only one of which I can now recall.

The very last little Sheldon came up and asked (I’m paraphrasing), “How did you deal with peer bullying?” in a professorial and exact tone that I instantly recognized. She said something like, “I was OK in elementary school, but was sent away for high school after lashing out at other students in public school to a school for troubled smart kids.”

Interesting, but not helpful.

This little Sheldon thought so as well. He said something else with a lot of vocabulary words about being into math or something in his tiny, incongruous adult voice. The audience once again laughed, good natured-ly, at way he spoke. He looked around frantically at the laughing people, and it was then my temper reared up and I got this terrifying deja vu.

While the adults in the room thought he was a treasure of a little Aspie child and very entertaining, he didn’t know why everyone in that big room was laughing at him.

I recognized his voice as my own as a child, and the reaction of the adults as one that puzzled and confused me at that age too. I gathered from his question that he was beginning to have the increased difficulties with the other kids that I experienced around age eight. I got really into 19th century adventure literature like Melville, Poe, London, and Hawthorne in the 4th grade. When I spoke I used the same archaic vocabulary and prosody as a syphilitic Nantucket whaler. Adults thought it was adorkable and precocious, but my classmates DID NOT LIKE IT AT ALL.

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Not a good look for a little girl

I wasn’t into trains, or math, or, OK I was into dinosaurs big-time, but I was very verbal and into reading is what I’m trying to say. There seems to be this expectation that Aspie boys should go into manly STEM subjects and girls, well, should shut the fuck up if we exist at all. Not one spectrum woman or girl got to ask a question, which I thought was odd considering here we had a rare opportunity to ask an autistic woman to answer questions about her life experience. Ms. Grandin has never spoken much about how being female has affected her socially or occupationally or personally.

Grandin’s experience is not typical for a person with Asperger’s or autism both in the amount of assistance she received back then and how successful she was at her job.

(TONS of autistic females were there I must point out. The organizers preferred to trot out Young Sheldons and professionals whose questions were beyond her. I think she might not be as smart as we give her credit for. Forgive my blasphemy.)

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I cried the whole drive home. It seems like the most urgent issues facing autistic people, especially females, are not being addressed in favor of turning an androgynous autistic woman, who is nothing like the vast majority of Aspies, into a national mascot for our community. When non-autistic Americans think of adult autism they think of Temple Grandin and that’s a problem.

Temple Grandin does not have Asperger’s Syndrome. She is on a different part of the spectrum and had speech and intellectual delays which put her out of the running for Aspie. These delays also led to her being identified and helped rather early. Apparently there were still schools for poor farm kids to go to who were smart and unruly. Not so now.

Not all of us “think in pictures.” Some of us think in words and patterns.

Grandin’s experience is not typical for a person with Asperger’s or autism both in the amount of assistance she received back then and how successful she was at her job. Her symptoms were more severe and led to her being identified when someone with no speech delay or learning disabilities would be tragically missed. I’m glad she got help and was able to make it so cattle are calmer when being led into mechanized death, but her story gives the impression that autistic people are generally being identified in time and getting proper interventions, AND WE ARE NOT.

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Yes

Nearly everyone with Asperger’s from her generation, and a great deal of other autistics besides, were never identified or accommodated so that they could be successful. There are entire lost generations of failed and misdiagnosed autistics who still desperately need help.

There’s also the fact that if you are an autistic person with great verbal talent, you are kind of screwed. As I have explained, I’m not particularly high-functioning in my day-to-day, but I am articulate, intellectual, and able-bodied. I need some temporary disability benefits, but will never receive any help because of how I present as being more capable than I am.

In fact, I convinced myself for years that I couldn’t be autistic because I could understand humor and sarcasm and metaphor.  Turns out you can have a brilliant sense of humor and not be literal all the time and also have great difficulty with autistic symptoms. Reading (particularly hyperlexia) goes a long way to overcoming these deficits and many female and male Aspies are missed because we are so verbally talented. Reading helps us figure out subtext in some situations where it would be harder for us and allows us to learn better cognitive empathy and conversational skills than some others on the spectrum who have different talents.

Not all of us “think in pictures.” Some of us think in word patterns. Educators and clinicians would do us all a favor to learn this.

 

Not Every Leonard Gets a Penny

The difficulties of befriending autistic men.

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Since discovering that I have been on the spectrum without knowing it my entire life, I have redigested my past like fetid, fermented cow’s cud. The most disturbing part of this process was realizing that so many of the people who were naturally drawn to me and vice versa were also unidentified neurodiverse individuals. Birds of a feather and all.

I know now that the majority of the men I have been involved with for any length of time are likely Aspies. All those relationships were a confusing disaster. When not one but both people in a relationship have communication disorders, intimacy issues, mental illnesses, and are unaware of it, it’s not going to work out and you won’t know why.

I’ve dated a particle physicist (long before Sheldon was created), a renowned author of books on philosophy, a brilliant glass artisan, and a professional classical guitarist. Very talented dudes. But they were all super-annoying after a short while, as am I when trying to navigate dating in the darkness of self-ignorance. These romances were quick to fizzle.

However, the consequences of spending time with and befriending men on the spectrum who you are not romantically or sexually interested in are dire as well.

Why? Several reasons:

  1. Crushes and the subsequent rejection feel far more powerful to us than they do to neurotypicals. All emotions feel much more powerful, and unrequited interest is one of the most hurtful and embarrassing experiences for anyone. Spectrum people have been rejected over and over in their lives and have very fragile self-images. A broken heart can derail us for a long time and lead to terrifying meltdowns and suicidal ideation. There’s a lot of talk about the obsessive, proscribed interests of Aspies, but crushes are also in that category. We can be utterly consumed by an interest in a subject, object(s), or person.
  2. Kindness and social chit-chat are often misinterpreted as romantic interest. I have only three modes for talking to people no matter who they are: Golden Retriever, visiting lecturer, and cold fish. Like most Aspies I have difficulty with both interpreting and expressing finely tuned emotions. When I am very attracted (mentally and physically) to someone, my brain, without any input from me, will choose to interpret his words and expressions as him returning that interest. Then my imagination goes to work and I can’t focus, even though I really want to, on anything else until I know for certain how he feels about me. I build a future with this person in my mind and fall in love with my anticipation. This has led to some mutually humiliating incidents for which I am not proud. I know how devastating this feels and I don’t want to inflict this on anyone else.

Here you are being ignored and rejected for so long and then you meet a pretty girl who is more like yourself than anyone you’ve ever met. It’s easy to feel like a relationship with her is owed to you after all the pain you’ve had to endure.

3. Aspies have difficulty reading subtle, polite expressions of disinterest from the people we get crushes on. When the shoe is on the other foot and I am the one who is not interested in someone on the spectrum, I have no idea how to discourage him without humiliating him and dealing with the consequences of that. I had a wonderful friend for a long time who is on the spectrum (and unaware of it). I tried every subtle conversational way I could without being “mean” or very explicit to tell him that I was not interested and never would be. He just couldn’t figure it out. Every time I tried to set a boundary (“No, you can’t stay over,” “Stop using my yeast infection cream on your psoriasis.”), he had a petulant meltdown. We are estranged now. If there is any way to let an Aspie down without hurting and humiliating him with the degree of clarity that is necessary for him to get the message, I am all ears.

4. Entertainment media has given Asper-dudes (and men in general) unrealistic expectations. If you’ve looked into feminism at all, you’ve heard that media doesn’t portray women’s wants, wishes, or preferences all that realistically. The hero always gets the girl as a reward for his effort and hardship regardless of what her opinion might be, no matter what they look like, how much money they make, or how troublesome they are. And everyone is the hero of their own story. In most sitcoms, video games, movies, and books the male underdog miraculously gets the femme fatale.

This is not real life. Part of it is a double standard in how we expect to choose one another. It’s not considered out of the question for an unattractive, awkward man to bag a very attractive woman on TV shows or in movies, but not the other way around. Men expect that they will attract a woman that they find visually appealing even if she’s a ten and he’s a four (even with money). They feel they are entitled to a princess whether they’re a prince or not.

Women are not the gatekeepers of sexual justice. Even if we have a lot in common with a guy and even if we are also on the spectrum, that does not obligate us to become romantically involved if we don’t want to be. However, I understand how guys feel. Here you are being ignored and rejected for so long and then you meet a pretty girl who is more like yourself than anyone you’ve ever met. It’s easy to feel like a relationship with her is owed to you after all the pain you’ve had to endure. It’s finally your turn for love and sexual intimacy.

I’ve known men so downtrodden for being nerdy and so determined to convince me that they deserve me, that I’ve handed out some sad pity-fucks in my time. I was pressured to be with men I wasn’t attracted to even after I made my wishes known. Since they were so like-minded I was afraid if I didn’t, I would lose my friend forever and friends are hard for me to find and keep. Especially ones who understand me.

I’ve already taken a few for the team and never plan to do so again.

5. Aspie women don’t necessarily have the ability or desire to look after another autistic person. When I was dating my last boyfriend, who was by far the one most on the spectrum of any other, my sister said something about us that stuck with me:

Two wrongs don’t make a right.

Harsh, sis. I’m not suggesting that relationships between two autistic people are doomed or impossible. A great deal of study needs to be done on how some if us successfully navigate relationships and differentiate from neurotypical couples and families. Many of us would rather be with someone else on the spectrum.

I need someone to pick up my mess and help me. Most spectrum men I have known have the same deficits as I do, so our skill sets are not complementary.

However, I am not high-functioning. I am smart, extremely verbal, and very good at masking my autism for short periods of time. This leads people to assume that I am doing alright and don’t need much day-to-day support and that I can take on the hectic responsibilities of a nearly neurotypical woman. But I’ve experienced a lot of trauma in my life, physically and mentally, and I’ve developed a co-morbid mental illness from the destructive effects of not knowing what I was or how to keep myself healthy and safe.

My place is a wreck. I can never sleep or keep to a regular routine. My executive function is so low that I often get appointments and work schedules and due dates mixed up. And birthdays and names and faces. I forget to shower and eat when I need to, even when I really go out of my way to try. I have very little patience for other people, especially if they are co-habitating with me. I am set in my annoying ways and don’t like other people in my personal space. I still struggle to get though my day and I don’t even have a job. I have been sexually and socially traumatized, and my brain is wired to deeply mistrust men. I have scary meltdowns like any other autistic person.

I’m medium-functioning I guess, but my life would improve immensely with a personal assistant and a cleaning lady once a week. And a career and respect and understanding.

These are the reasons why I can’t take over the executive function, chauffeuring, and house-cleaning duties that the wives of Aspie men are often expected to perform. Even if you are also an Aspie woman, those tasks will more often than not end up being yours. I need someone to pick up my mess and help me. Most spectrum men I’ve known have the same deficits as I do, so our skill sets are not complementary. And I’ll be damned if I’m going to be his new mom. That’s reality.

I don’t want to disappoint and embarrass well-meaning, sweet guys on the spectrum, so I unfortunately have to keep the single ones at a remove, socially and often physically.

I hope the other lonely hearts will understand.

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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.