Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Monday, November 1, 2021

Autistics Speaking Day 2021

CW:  death mention, child abuse, dissociation, behavioralism and psychiatric abuse, suicidal ideation, discussion of ableism throughout, hospitalization, guardianship mention, non-graphic mentions of sexual harassment and abuse

Note:  I am going by the name Kat now, and my pronouns are she/they.

1995, Alabama 

It was my first funeral.

It was an expected death.  I knew what death was.  Seeing my grandmother’s body didn’t particularly bother me.  The arrangements themselves were fascinating, maybe because they were a distraction from the actual event.

Of course occasionally it would hit me all at once what had happened and I would cry.

For all they say about autistic people and lack of empathy, I was the first person to console my grandfather about his wife’s loss.  I insisted on holding my grandmother’s hand because I saw my grandfather doing the same thing, but I had to stand on my tip toes to reach the casket.

I was only five years old.

My grandparents were closer to me than my parents were, especially my grandmother.  My reactions to everything were extremely odd maybe but never unloving.  Dissociation is a hell of a drug.  When I wanted to watch the coffin go down after the funeral, they let me watch.

What I wasn’t allowed to do was mourn.  A couple months later I found myself being forced to justify myself every time I cried.  I was told that I should be happy that my grandmother was dead, because she was suffering, and was in heaven.  If I cried, I must not really love Grandma.  “You’ll go to heaven too one day,” I was promised.  

At first I was terrified of dying, but then I found myself fantasizing about dying from sudden illnesses or car accidents.  Every time I was screamed at or hit, I found pleasure in the thought that I would suddenly die.

Approximately 1996, St. Louis 

A small girl sits in front of a psychiatrist’s desk, fidgeting.  He smiles.  His smile is too big.  It makes her nervous, and she doesn’t know why.  He stares too long, and that feels wrong too.

“[Name redacted], you don’t…fit in.”

Fidget.  She watches her feet because he just keeps staring.  He does the thing again where he tries to make her look in his eyes, and it’s uncomfortable.  She turns her head.

“You don’t play with the other kids.”  

Apparently he hadn’t been listening when she had said that the other kids bullied her.  She tried to play, and they were mean.  This felt unfair, but saying that always resulted in “life’s not fair” speeches.  No one ever cared.  Maybe it was her fault.  Everyone else thought so.

“So we need to try to work on how to make you fit in.”

She thinks about this phrase, about how it feels when she is forced to wear poorly fitting clothes.  She thinks about the way that groups of children would form circles during P.E.  How even when they were told to let her join, they would refuse to budge and laugh when she cried, and the teacher would blame her.  This was surely what the doctor meant by not “fitting in.”  

The realization hit her then.  It was her fault.  All her fault.  She was weird and no one liked her.  And maybe there was hope.  The kids would let her join the circle if she was fixed.

She wasn’t allowed to cry.  He would probably tell on her.  She didn’t trust the smiling man.  But she would do what he said.


It was never accepted that I couldn’t be normal.  Through force of will, I could fix myself, and I wasn’t trying.

“Why didn’t you—“ 

“Why can’t you just—“

Everyone is always yelling about something, and I can never do anything right.

“[Name redacted] does not apply herself,” appears on report cards as often as “[Name redacted] is a pleasure to have in class.”  Both are pointed to as evidence that I am lying about what has happened.

“How long are you going to use your disabilities as a crutch?”  That’s said at least once a week.  If I say I can’t do something, I am lying or not trying.

An assessment at some point suggested that I could be autistic and my mother threw a fit.  I wasn’t an r-word, I was smart.  I was going to do great things.  She had plans for me before I was even born, and some diagnosis was not interfering.  How dare they call me that.

Every time I am called an r-word by a classmate, I remember that assessment and the knife is twisted.  “Why don’t you sit with all the other freaks?”  I sit alone because I am too scared to be outed.  But they know.  They call me queer too.  Of course they know.

I can’t do great things if I am like that.

I try to forget the assessment because it was clearly wrong.

Approximately 2007, Freeburg, IL

I am pulled out of class to go to the school counsellor.  I hate her.  She is one of those people who makes exaggerated sympathetic faces that I know are insincere, but am forced to pretend are genuine to prevent myself from being punished.  She tells me constantly how she knows how I feel, and she is wrong 90% of the time.  She makes decisions that she is certain will help, which have always given me immediate panic attacks because I have to go behind her back and undo them.  

She obviously thinks she is an extremely good person, which I consider her most obnoxious trait, but I am not permitted to say anything to her about any of these things.  She is a very good person for helping a poor troubled kid like me, especially when she makes it harder for me to exist.  I am a bad person if I tell her this.  This is the way it works and I learned this when I was extremely young.  Me bad, adults good.

She basically tells me that she’s decided that I act weird.

I stare at her, dressed in my goth regalia, in trouble for writing a disturbing short story for English (ffs I was supposed to reimagine Chaucer and I did what was asked), and am once again thoroughly unimpressed with her insights.  

She goes on to describe my behavior in a way reminiscent of progress reports that shamed me for being bullied and outcast.  Unsurprisingly this went poorly.  I felt cornered, and got defensive.

“Have you ever heard of Asperger’s syndrome?”

Irritated, I said I had not.

She somehow managed to describe it as being “socially r****d.”  (She later gaslit me and claimed she never said this.)  At this point I mentally checked out and refused to participate in any discussion.  

It didn’t matter.  She had called my mother.  I got home to find that “autistic” had been scary years before but “Asperger’s” was great and “so me,” because it was “autistic for smart people.”  I felt extremely violated, and the sudden switch in attitude was hard to accept.  I didn’t understand why until my mother looked me in the eyes and said, “I guess you won’t be going to college.” She didn’t look disappointed.

I could see all my dreams disappear in that instant, any chance of escape.  She wanted to keep me there. I had a full meltdown.  “I don’t have this!  I don’t!  We are never discussing this again!”  

That night I Googled Asperger’s syndrome, just to be safe.  Autism Speaks was the first result.  Their description was so pathologizing I didn’t recognize myself in it at all.  It made me hate myself more, and try harder to conceal any traits I had that looked like those.  Especially with the constant unwelcome pressure to accept it for magic scholarships that didn’t exist.

Around 2012, St. Louis, MO

I am in a psychiatric hospital for a mental breakdown, the first of many.

“We can’t help you if you don’t use your words.”

I stare as the utter hilarity of the phrase strikes me, considering how often my words were used against me or my silence was forced.  I can’t physically speak now anyway.  This is not an okay way to speak to anybody, especially an adult, especially someone who has a disability that makes speech difficult.  If you say this, fuck you and your power trip.

I am absent from my body as they speak about me as if I am not there, as one would an animal.  I remember my childhood psychiatrist, who would make me play while he spoke about me the same way with my mother and everyone pretended I didn’t understand, and that I didn’t care about the lies.  

There’s not much I can object to here.  If I don’t eat the food that I physically gag on, I will be force fed.  I don’t have much choice about the drugs.  Every reaction I have is monitored and I am to self report every thought I have so they can tell me if it’s valid.  “This is helping you.  Don’t you want help?” they ask, as I object to what is clearly a reinforcement of all my worst traumas.  

It doesn’t help.  Almost any of the times I go in.  I keep coming back worse.  Until the thing I am most afraid of in a crisis is the hospital and the doctors.  

They tell me what is real.  They rewrite my life story.  They baby talk me, do toxic positivity and pseudoscience, and if I show any slight signs of offense I get in trouble.  Patients who complain are sometimes sent to worse places.  They know me for two seconds and insist people they have never met obviously love me, and give me terrible advice that hurts me when I follow it.  They try to force me to pray.  They sexually harass me where I have no ability to fight back.  They let patients harass each other and shrug and say they can’t stop it until it gets physical.

I am told this is help.  I go home and see people say that we need more places like this.  “Lunatics running the asylum” is seen as bad but we are never consulted, and that is why we are abused.

Online, 2020

“But you’re high-functioning.”

I laugh at this description from a stranger.  I barely have the executive function for chores some days.  Multiple AAC programs are installed on my phone that have failed me because they were designed for children.  I go through periods of aphasia so severe that language will disappear almost completely due to stress or just brief overexcitement.  When my sensory overload is bad enough I strip because my clothes hurt my skin. 

Most people don’t seem to be aware that I’m under a guardianship since my third suicide attempt in January of 2020.  And some warrior mom will smugly insist that I must not be autistic (or the right kind of autistic) because I type good, and her kid never will.  Which often she doesn’t know.  Often the kid is under six.  

The rubric being used here is that I am an adult who can type.  That clearly has nothing to do with how severe my disability is. 

What’s even funnier is when people hear I was late diagnosed and accuse me of shopping for my diagnosis.  As if I wanted this at the time.  As if I wasn’t denied a diagnosis at an earlier age.  As if I get any fucking thing out of this.

St. Louis, 2021

I’m hilariously easy to abuse.

My involvement in ASDay, originally under my deadname, is really ironic, because I was very different years ago.  A people pleaser.  Unable to say no easily.  A product of years of abuse.  I felt proud of it, really accomplished, and then I would feel overwhelmed with doubts because really it was Corina’s project and I had just promoted it, and I have become less involved each year as things have deteriorated for me.  Corina has been extremely understanding and tried to keep me involved without overwhelming me.  I still think I probably got more credit than I deserved for it, despite having less imposter syndrome now.

I still sometimes freeze up when I should advocate for myself.  Years of being silenced have left me with maladaptive coping skills.  Dissociate.  Hint.  Prod.  Do a passive aggressive.  Bottle it up until I snap, because I’m sure not a full human who’s allowed to show emotions, but eventually the resentment will build.  Does this make me a bad person?  People are supposed to be happy all the time, and nice, even though people are doing horrible things to them, right?

I found ways to survive.  I lied to avoid punishment.  I hid and stole food.  When I tell people the awful things I was doing they expect that I was lying to hide the kind of things most teenagers hide, not evidence of my disabilities or innocent interests.  

But when I get caught I am evil.  Manipulative.  Sinful.  Even though I was being treated much worse, but of course I wasn’t allowed to talk about that, because that would be spreading rumors, and they had me outclassed as manipulators.  My skills were honed for survival, not causing torment.  I don’t think I was a bad person but people saw my actions when I was frightened and naturally assumed the worst about me.  

And when I finally wanted to explain to anyone I couldn’t get the words out, and people just assumed that I had normal loving but strict parents and was a normal rebellious teenager.  I barely left my bedroom, and now I don’t leave my house.

My old coping skills don’t work for me anymore.  I have put significant effort into changing my actually shitty behavior.  But no one wants to recognize that change takes effort, and money I don’t have, or that this was a survival strategy born out of trauma.  No one wants to recognize that I would have never survived if I hadn’t developed these strategies as a kid, because clearly I was evil even then and deserved to be hurt, or that my trauma was anything other than imagined.  Because look, these documents say I’m crazy!  It’s not like child abuse causes mental health issues, right?

People will also legitimately ask me why I didn’t leave when things first got bad in awkward situations that escalated into horrible ones.  The simple answer is that I have been programmed my entire life that I am not allowed to leave such situations.  I have often had to use my wits to figure out how to get people to hurt me as little as possible, and leaving is not an option I realize is available.  Either I froze and fawned, or I fought and was punished.  It’s extremely difficult to find a balance between those extremes when I can’t afford a therapist.

I’ve realized that people don’t like it when I assert myself because they’re used to being able to use me as a doormat.  I don’t think this is an unusual autistic experience, and I am much happier without those people in my life.  There’s people that will respect the real you.

Advocating for others was easier.  The stakes were much higher when I advocated for myself.  It’s the hardest thing I have ever had to do, because all of my programming for years has taught me to keep my mouth shut.

I guess what I am trying to say to anyone reading this is don’t forget to advocate for yourself, even if you have to take a step back for a while.  We can’t keep having autistic advocates quit due to burnout.  There’s a significant issue in this community where advocates with more privilege are being cruel to those who lack it, and I have avoided a lot of this on account of being white and dropping out of things when I became more visibly disabled.  Thankfully there’s a lot of people talking about this constantly, and I am glad.

I’m blogging regularly at The Turbulent Autistic on Facebook right now.  I don’t think I am going to use this blog much anymore.  It’s a relic from before.  

Wednesday, November 2, 2016

ASDay Post

I don't even want to think about how long it's been since I've posted here.

And I didn't want to think about how long it had been since I'd been involved with Autistics Speaking Day, or any sort of activism, when I talked to Corina again.  I mean, it was no secret that I had stopped doing pretty much everything that I used to do.  I had helped popularize ASDay, but now I had started avoiding it every year, as it arrived and on the actual date and as it passed.  Too much depression and anxiety.  Too much self-loathing.  Too much doubt.  Too much panic that welled up inside me anytime I tried to do anything that made me feel like maybe I was a person.  Too many voices telling me, "You'll never be good enough."

But that wasn't who I wanted to be anymore.  On new medication, I was doing a lot better, and starting to enjoy life again.  I had been spending time through the past few months fixing all of the problems that I used to spend hours worrying about, and it was making life better for me.  And I was not going to be afraid of Autistics Speaking Day forever when it could be fixed, and I could have what I wanted and I was capable of doing the job.  So ignoring the tangled pit of fear and doubt in my stomach, I sent Corina an IM.

A few minutes later I knew a few more things than I did before.  One was that Corina is a very understanding person and a good friend and I love her for it.  Secondly no one was mad at me for being too sick to help during that time, even though I blamed myself for it, and I'm struggling still not to blame myself for it.  Thirdly, and most importantly, I could help with posting the ASDay submissions to the blog, which was music to my ears.

I don't know how to explain how hungry I've been for something like this.  I was so desperate to succeed at something, and it felt like an enormous pressure.  Putting the first blog post together took Xanax and lots of nicotine.  "It shouldn't be so hard," I told my husband, who was holding the pill bottle for me as I gulped down Coca-Cola. "I know exactly what I'm supposed to do and how to do it.  It shouldn't be so hard."

I was afraid that imposter syndrome that drowned me the other years would shut me down again.  But as I worked an amazing thing happened.  I gained confidence and kept pushing out posts faster, because I knew that I knew what I was doing.  I started to believe in myself again.  It was a good feeling.  And I knew I was back.  At the end of the day I felt exhausted but accomplished.  We had nearly 30 posts.

This isn't the best post I've ever done, or even a traditional ASDay post, but it's about what happened to me on ASDay and why I've been absent all this time.  I'm happy with posting it as it is.  Happy Autistics Speaking Day, people!

Monday, March 5, 2012

News from Kathryn Bjornstad-Kelly (yes, you read that right)

It's me again.  I'm still alive.  Slightly different name, different situation, plenty has happened since my last entry.  It's been so long since I posted that I almost feel embarrassed to be here again.

Things were really hectic after I made my last post till...well, about right now.  Taking 16 credit hours was a BIG was horrible.  I came home and cried every day.  I barely had time to get anything done.  I felt like a failure.  The trip to D.C. was awesome but busy and left me with unfinished work-work and schoolwork.  I never even got to write a blog entry about it.  Corina did, and you should check hers out.  I intend to create a post about the D.C. trip eventually.  It's just not what I want to focus on right now. 

I ran out of steam long before the semester was over.  Most people have a hell week where they are super-busy trying to get schoolwork done.  Not me.  I had two whole hell months.  The last two weeks were the worst.  I had to write four papers 1-page papers for one class, two 3-page papers for another, one 30-page thesis in another, one 10-page paper for another, and take a midterm exam.  I was also supposed to be planning my wedding during this and I didn't have time for it at all, which led to even more stress.  I barely got everything done in time.  I finished my senior thesis an hour before it was due and I was so stressed and sleep-deprived that I could barely think straight.  I wrote it on the history of the online neurodiversity movement and it was supposed to be around 30 pages but it had ballooned to more like 65 (not including the six-page bibliography).  I couldn't move out of bed for two days afterwards and without the adrenaline feuling me like it had for two months, every single muscle in my body ached.  I was really, really sick.

I'm done with school now.  My final grades were great, especially given how poorly I expected to do.  I forgot to sign up for graduation earlier this semester so I have to wait till May, but I'm done with classes.  I'm not even going to the graduation ceremony.  I don't care about it that much.  I'm just relieved that school is over and I don't have to feel the horrible panic of having a million papers due at once ever again.

That was in December.  I thought now that I'd caught up on things I'd write another blog entry...except that when I wasn't working I was playing video games or messing around on the Internet.  Then I started planning my wedding again.  I'd left a lot of things go, including the invites, during my two hell-months.  I sent them out a month and a half before the wedding, and then it was a mad rush to get everything done in time.  Two weeks before the wedding I was regretting my decision to have a large wedding and a couple days before the wedding everything was going wrong.  Due to circumstances too complicated to go into, our minister and one of my bridesmaids had to back out at the last minute.  (No hating on them in the comments, it wasn't anyone's fault, just unfortunate.  I'm still friends with both of them.)   We got one of our friends to step in for the minister and one of my cousins was able to fit in the absent bridesmaid's dress.  Problem solved. 

I got married at the Univerrsity of Missouri-St. Louis's chapel at the Pierre Laclede Honors College on February 25, 2012 to Sean Kelly.  I was in a hurry the day of the wedding.  I barely had time to put on my dress and makeup before I was being handed my bouquet and I rushed to the chapel.  I was still calming down as I walked down the aisle to "The Princess Leia Theme" from Star Wars.

I never used to dream about my wedding.  Getting married was not a life goal for me because it seemed foolish to focus on wanting a wedding instead of marrying someone if you felt it was right.  If I had to do it over again I would plan it sooner and on my own and with less stress, but I'm glad it happened.  Everything pulled together in the end, and it was a beautiful wedding.  (The watermarked photos were taken by KSD Photography, by the way, and more can be seen on their Facebook page.  They'll have the rest of their pictures to me soon.)
Sean and me with our maid of honor, best man, bridesmaids, groomsmen, flower girl, and ring bearer.
Bouquet by Krupp's Florist in Belleville, Illinois.
First dance.  Reception and the ballroom at the Ramada Inn in Fairview Heights, Illinois.
Wedding cake and groom's cake by Marla Price.
Being married doesn't feel that much different than being single did.  I'm still living in the same apartment with my husband, our roommate, and two cats.  My name is now Kathryn Marie Bjornstad-Kelly, and now I wear both pieces of my wedding ring set--it was a band and engagement ring, and I'll have a better picture soon.  Here's a picture of me in my engagement ring with Sean in his wedding band for now.  Mine is a light blue sapphire in white gold and his is titanium.
Right now I'm relieved everything is over.  I'm slowly writing thank-you notes and I'm eager to get back to work now.  Things are looking bright.  We paid for our entire wedding in cash and don't have a cent of debt, we got to stay a night in the awesome Moonrise Hotel on the Delmar Loop, I'm getting a new phone and Sean is turning 30 soon, we have lots of new kitchen equipment, we're planning a honeymoon's been a long time since things have looked this good. 

It looks like I'll have a lot more time to blog now.  I hope all my readers are doing well.  You can expect to see a post on the ASAN Anniversary Fundraiser sometime this month. 

Saturday, November 12, 2011

November Updates

It's been an interesting month, and it's been a while since I updated.  But I'm up late, can't sleep, and my back pain is particularly brutal at the moment, so I figured I'd take the time to let everyone know what's going on.

Autistics Speaking Day was November 1st.  It was our second annual ASDay, and more successful than the last.  The permanent ASDay page got more likes, and although we had fewer people who clicked "attending" on the event page this year, we had a significant increase in the number of people who created videos, blog posts, pictures, poems, and other works for ASDay.  Last year we had 80; this year we had over 100.  Corina and I are very pleased with the results.  I wish I'd had more time to devote to promoting it, but as I'll explain in more depth later I've been ridiculously busy this year and I let it go more than I should have.  We have links to all of the posts on our blog, including an article in the Guardian.  I even made my brother jealous when I found out Stephen Fry tweeted about ASDay, which led to several more people becoming interested in it and me basically freezing for several minutes going, "Stephen Fry knows who I am.  Stephen Fry knows who I am," and talking about it to anyone who would listen. 

All in all, was a good day, but after it was over I had a drink to calm my nerves and slept for 14 hours.  I'm sure I mentioned this before, but it's extremely stressful running an event like ASDay, and the "YES, I DID SOMETHING AWESOME" feeling comes along with feeling overwhelmed and overworked.  I think it will be easier for me next year when I'm out of school.  I'm really glad I had the opportunity to work with Corina and with all of the people who participated in ASDay.  I know it meant a lot to a lot of people, and I think we all deserve a huge round of applause for our work.  It will never cease to amaze me what happened last year, and now that I'm here looking back at Kathryn Bjornstad in 2010 I see that ASDay changed my life for the better.  It was the first time I really participated in the autistic community, and it was a launching point for me to begin working with ASAN on their communication team, which has put me more in touch with the needs of our community.  I feel like I'm making a difference in the world, and I'm doing things I never thought were possible before.  I went from seeing myself as an unemployed student with an inferiority complex to seeing myself as an activist.  I'm not famous, I'm not all that impressive, I'm not charismatic or anything like that, but I'm still capable of having some kind of an effect on the world.

Corina and I have seen our work pay off.  Most of you have probably already heard, but ASAN is having an anniversary fundraiser later this week.  When I heard about it I wanted to go but did not think I would be able to.  Then I found out that Corina and I were receiving an award for our work on ASDay and I would get to go to the fundraiser in Washington, D.C. to receive it.  I am both shocked and extremely excited about this, and I'm grateful to Ari and the others at ASAN for giving me this opportunity.  This will be my first time meeting Corina, who changed my life when she first typed out the phrase "Autistics Speaking Day."  We work really well together and I consider her a friend, but I've never spoken to her before.  I've never met any of my other advocate friends in person before, and I'll be meeting a lot of them this week, including Ari Ne'eman, Melody Latimer, Lydia Brown, Emily Titon, Savannah Logsdon-Breakstone, and possibly others I haven't heard from yet.  (Please let me know in the comments if you'll be in D.C. for the fundraiser--I'd love to meet you.)

Trying to attend the fundraiser has created even more work for me, including something you all will hopefully see at the event itself.  It's been hard trying to plan the trip while I'm so busy myself.  We had to arrange our flights and find a hotel room for both myself and Sean, who I would not be able to travel without since I will melt into a ball of oversensitive mush as soon as the plane's engines start making noise, and I rely on Sean's help a lot, especially in stressful situations.  I also had to find clothes suitable for a formal event when I realized the dress I had planned to wear doesn't fit. 

It's just been a stressful semester in general for me.  I'm taking 16 credit hours at the moment, when I've only been able to survive taking 12 at a time before.  At the end of this semester I will be done with school and I'll get the degree I was going through all this pressure for.  I'm writing my senior thesis on the history of the autism rights and neurodiversity movements while trying to keep up with work and the rest of my course work.  I don't have much time to myself anymore.  I normally need to relax for as much time as I spend working in order to retain my sanity, and it has been sadly impossible to do that between everything that's been going on.  I've been experiencing more meltdowns and more panic attacks and started taking medication for my anxiety. The stress is causing my muscles to tense, and tense muscles make my back more likely to hurt, and the pain creates an even lower tolerance for stress.  I turned 23 a few days ago, and my only wish for my birthday was that I could spend the whole evening letting my back unclench and watching Sean play Fallout: New Vegas.  I'm thinking about my upcoming wedding that's only three months away.  I'm thinking about the student loans I'll have to start paying off and the terrifying amount of money I spent on my education.  I'm thinking about the fact that my house is in desperate need of a cleaning and that it's been a while since my last cortisone injection and I can feel it.  I have two papers due while I'm in Washington D.C., one of which is 30 pages and I haven't had time to start on either.

I'm really lucky to be working with people as understanding as the folks at ASAN, who are working with me to make my work load easier.  A great deal of my stress is my own fault for not letting them know earlier that I was struggling.  I hope once I'm less stressed out that I'll be of more use to them.

I hope I don't sound too depressed or negative.  I know everything is going to turn out okay.  The thing I want everyone to understand is that my life is a heterogeneous mix of happiness and stress right now.  I'm extremely happy with the way my life is going.  A year ago I had no idea what my future was going to look like, but now a huge part of the image is clear and the future is very nearly my present.  In a few months I will be a college graduate, be married, my resume will have an impressive-looking award and an actual degree to make it prettier, and hopefully I'll be increasing my work at ASAN.  But what that means is that my life is changing extremely rapidly, and sometimes that makes things look a little ugly.  I see the light at the end of the tunnel, but what I need right now is more sleep, a good massage, and a soak in a hot tub.  Well, at the very least I can work on the first one as soon as I post this, and I'll wait until the others become possible.  I'm looking forward to the event in D.C. and hopefully it will be a nice little vacation for me.  Wish me luck!

Thursday, August 25, 2011

A short and belated coming out post

I don't think I ever mentioned this before, but I'm bisexual.  This may seem kind of random, because, well, it is, but I've kind of been keeping quieter about it than I used to and I don't really know why.  Most of my close family and friends already know, but I've hesitated to discuss it here because I'm afraid to experience the minor backlash some other queer autistic writers have received.  Since I'm in a monogamous relationship with a man, I felt kind of comfortable letting people assume I was straight, and I honestly feel really awkward not mentioning it. 

Just to clarify, I realized I was attracted to girls when I was about 12.  I was kind of upset about it at first, because I knew gay people but I didn't really want to be a lesbian.  Just as I was coming to terms with it and ready to mention it to my mother, I realized I was attracted to boys.  I wound up having to tell my mother I thought I was gay but couldn't decide if I was gay or straight because I thought I liked both girls and boys.  I had never heard the term bisexual before, and it took a couple years before I felt comfortable applying it to myself.  In an extremely homophobic school system I tried to keep my orientation quiet until high school, where people just sort of found out but didn't care a whole lot.  My parents, brother, some other relatives, and my friends were all aware, but after college I decided I wasn't going to keep it hidden anymore.  I only mentioned it when it came up in conversation to avoid seeming annoying.  I've never dated a girl before, mostly because I'm so damn awkward, and I've only dated three boys, including my current fiance.  I haven't decided to be straight by dating him, as if a person could decide that, but people have asked.  I don't know where all these stereotypes about bisexuals even come from.  I'm also not secretly a lesbian.  I feel like the stereotypes about bisexuals (the "bisexual" homosexual, the promiscuous person who sleeps with everyone in sight, the girl-who-makes-out-with-chicks-for-attention, the person who needs to just choose, the person who changes their sexual orientation every day, the confused person who thinks bi is cool) are worse than the ones about lesbians.  At least most people agree that lesbians are real.

I've encountered some criticism from certain parts of the gay and lesbian community itself for not being gay enough, or for supposedly being afraid to accept my true identity as a gay person.  I sometimes feel as if I don't belong unless I'm single or dating a girl.  Bisexual erasure is a very real thing.  For that matter, so is trans and asexual erasure, and erasure of other non-conforming gender identities and sexual orientations.  This is why I don't really do the whole gay pride thing.  The ostracism from the GLBT community was more hurtful than what I received from the straight community.

I've mentioned my sexual orientation to a few other bloggers, but I avoided mentioning it here, and only certain people can see the parts of my Facebook page that would indicate I was bi.  I also wasn't sure how my fiance's family would react to it, but eh, if they find out, they'll find out.  If anyone stops reading my blog because of this, I probably wouldn't want them reading my blog anyway.  So I'm coming out of the closet for good instead of standing awkwardly with one foot in and one foot out.  Closets are for clothes, not people.

Saturday, August 20, 2011

New Blog for Autistics Speaking Day

Don't worry; I'm not abandoning this one!  I wanted to create a blog where Corina and I (maybe along with some other people) could update people on Autistics Speaking Day.  Also, Autistics Speaking Day 2011 now has a Facebook event page.  I hope we will have another success.

Thursday, August 18, 2011

On Making a Meaningful Connection Through Writing

I seem to have attracted some attention lately and I've decided that I should write a blog post about it.  Some of you who are Facebook friends with me may know that I am, in addition to being a neurodiversity advocate, a strong supporter of vaccination and a regular poster on the Jenny McCarthy Body Count's Facebook page.  For those who don't know, the Jenny McCarthy Body Count is a pro-vaccination website run by my awesome friend Derek Bartholomaus.  Derek takes time out of his busy schedule to count all the people who have become ill or who have died from vaccine preventable illnesses since Jenny McCarthy started her anti-vaccine crusade.  There is a fairly active community of regular posters on the Facebook page for JMBC, and Derek and his other fans have been very kind and welcoming towards me.  Occasionally antivaxers will troll the JMBC fan page, but unless they are spamming or being abusive Derek does not ban them from conversations.

I enjoy arguing with antivaxers on this page.  I don't know why, except that it helps me blow off steam.  I feel that antivaxers have done a lot of damage to the image of autistic people and that they have made the world a worse place to live in, especially for autistic people like me.  Every so often one of my posts will get lots of "likes."  When I write something that a lot of people like I usually get between one and three private messages or friend requests.  I'm not sure if I'm as impressive as some of these people think I am, but the amount of praise I get from Derek's supporters has made me feel very comfortable in the pro-vax community.  And I try to be humble, so I almost feel like I'm being too self-congratulatory admitting this, makes me feel really good when people tell me how awesome I am.  Like, I sit in front of my computer blushing and I have to hold myself back from repeating all the messages I get to my friends, because I know it's really annoying when people are all, "Look how awesome I am!!!"

But I'm not writing this to say how awesome I am.  I think I'm a good person.  I think I'm a decent writer and that I'm interesting, but I don't think I'm that incredible.  I like attention, but that's not really why I write.  It really honestly touches me to hear that some of the things I write resonate with people, that so many people identify with my words, and it's usually not when I'm trying to show off.  It happens naturally in an unplanned way, and it's a very powerful and special feeling that I get when I realize that I have made that connection with someone.  It's not like pride or happiness or anything like that...I just feel grateful that I am able to make this connection, and I'm in awe of the way words have a power to make people feel this way.  It's not about my ability to write or their ability to write.  It's about this nearly inexplicable feeling that comes with making a meaningful connection with someone in a completely pure and honest way.  It's a feeling that is nearly metaphysical, one that's beautiful, and I want to share it.

That happened again today, on a much larger scale than normal.  Last night I looked at the Jenny McCarthy Body Count on Facebook to see if there were any new responses on a post there I had commented on a few days before.  And lo and behold, there was an antivaxer accusing me of believing only what my doctor told me, of not doing any research on my own.  She told me she knew of three people whose children had instantly changed from the MMR vaccine, that she knew a woman who got diabetes from a vaccine.  And I responded, explaining how I came to believe in the effectiveness of vaccines, why I do not trust antivaxers, and why making a tragedy out of autism is harmful to autistic people. 

And then something happened.  I got more likes on the comment than I usually do.  Then I was got several friend requests and several messages from people who identified with the comment.  Derek shared it on a note on JMBC's page and said that it was one of the best comments he had ever seen on the page.  (I am flattered and appreciate his compliment, although I think there have been many comments that were better than mine.)  A woman I met online through JMBC named Martine O'Callaghan wrote a blog post about how my comment had affected her.  I was pleased that she thought what I wrote was interesting enough to merit a blog post, but when I read her post I could barely believe that she had chosen the post as the first blog post she had ever written.  I have never felt quite as humbled and grateful for the reception I have received from this community, and for their support for my beliefs and the stories they have shared with me.  I am grateful that I was able to have this experience, and I hope I will have the chance again. 

The comment I wrote, as I wrote it, with spelling/typing errors and all:

Kathryn Bjørnstad: ‎@JustinValerie, there has never been a case of autism related to vaccines. Ever. The three people you say had their babies get autism from vaccines have no scientific proof the babies’ autism was caused by vaccines. If they did actually change within a few days or weeks, you’d expect a doctor to note that in charts and you’d expect them to prove their cases. Historically when something is discovered to be harmful and cause things like diabetes or cancer or developmental disabilities, you see the substances are banned or restricted (like DDT and Agent Orange), come with strong warnings on the labels (like alcohol and cigarettes), or have a doctor-backed campaign begging people not to use them (like fattening food). You don’t see a whole lot of doctors and scientists begging people to smoke and eat food that’s bad for them, because they don’t want to advise people to be unhealthy.

I assure you, as an autistic person I am extremely invested in researching the antivax community. I’ve studied a whole hell of a lot of evidence that didn’t come from my doctor. I have read the Lancet paper written by the former Dr. Wakefield who abused children with the same disorder I have. I’ve followed his case. I’ve followed information about all of the major figures in the antivax movement. I’ve read what they wrote. They have never been able to convince me to believe in a global conspiracy where evil doctors give people unnecessary shots knowing that it’s making people ill. They’ve never been able to convince me that the shots are unnecessary, or that they make more than a tiny fraction of people ill.

I’ve read stories about severe vaccine reactions and I know a couple people who have had reactions to vaccines. I know people who have become seriously ill from vaccine-preventable illnesses. I have seen what these diseases do to a healthy baby, and believe me, you are not more likely to get measles from a vaccine than in the community if you live in Africa, where children die every day from the measles. When I look at things written by antivaxers I see they have absolutely no proof, only a lot of conspiracy theories and speculation. Many of these people are so ignorant about science that they don’t understand how vaccines work or how the progression of science and cancer occur. Saying your friend got diabetes from a vaccine because she happened to get vaccinated some time before her diagnosis is like saying her hair turned gray because she stubbed her toe that morning. One thing has nothing to do with the other, and it sounds extraordinarily silly to suggest otherwise.

As for autism, it is typically noticed at an age where most children are developing social skills. This happens between the ages of one year and two years, so doesn’t it make sense that it happens then? It even happens in children who aren’t vaccinated. And it’s not so much a matter of it being triggered so much as it just becomes noticeable that something is “wrong” about that time. Autistic people are also known to spontaneously lose skills. I know an autistic woman who didn’t speak until she was a teenager, spoke for about two years, and then lost her speech again. She blogs and communicates by text-to-speech programs. I personally experienced a change in my abilities when I started puberty. It’s frankly not that unusual for an autistic person to suddenly fall behind, but it doesn’t mean they’re just becoming autistic.

Meanwhile, Jenny McCarthy uses my condition to frighten people out of their health and into buying her craptastic books. The antivaxers, in addition to being wrong and in addition to causing a resurgence of vaccine preventable illnesses in the US, have also made the world a worse place to be autistic. They have convinced people that being autistic is worse than being dead, that autism is the biggest tragedy in the world, that autism tears apart marriages (despite evidence to the contrary) and that autistic people are mere shells of human beings. I’m sorry but I really don’t appreciate that. I don’t appreciate seeing people like me blamed for their parents’ issues by virtue of being autistic. I sure as hell don’t think it’s better to be dead than to be autistic, and that kind of thinking has led to the murders of many autistic children. I reject the tragedy model of disability and I object to any characterization of autistic people as broken, useless, unwanted, or unhuman in anyway. Our lives still have value, and there is no reason antivaxers should feel the need to downplay our humanity in order to explain that autistic people have different needs than neurotypicals. But when a parent murders an autistic child, Age of Autism defends them in a way they would never defend the murderers of neurotypical children. In conclusion, the antivax community is dangerous to public health, ableist, and prone to bizarre reasoning and leaps of logic that Evil Knievel couldn’t make. I really see no reason to abandon science, logic, and my own health for that.