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.

 

What the hell do people think of me?

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

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

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

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

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

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

In summary:

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

 

 

 

 

Different, but not uncommon

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

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

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

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

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

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

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

This was only one of my “mistakes.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am darkly familiar with self-fulfilling prophecies.

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

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