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 mistake...school 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 soon...it'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. 

I wish a title could hint at the incredible pain I'm trying to describe

I wake up to the sound of the bedroom door opening, several yards away from me.  I hear Sean pause in the doorway, probably looking at me, surprised to find me there.

I wince.  I can see the light shining brightly through the window even through my closed eyelids.  I can’t talk.  Everything hurts.  He walks into the office, probably assuming I’m still asleep.  It usually takes me a few seconds to regain the ability to talk in the morning, but today I’m having a nonverbal episode.  It will take several minutes before I can talk.

I’m on the floor in my living room, lying in the narrow space between the couch and coffee table where I had settled last night when I realized I couldn’t walk to the bedroom.  There is no denying the amount of pain in my back.  It’s harsh and unbearable.  I try briefly to sit up but I’m only inches off the ground when the muscles in my thighs and back spasm violently and I fall back down.

I have a pillow under me but it offers little comfort.  I had managed to drag a quilt over myself before I went to sleep last night, and spent hours staring at the ceiling and petting the kitten, who was unusually friendly as if she felt sorry to see me in such a horrible state.  The kitten was gone when I woke up, but when she hears me moving she runs from the hallway and sniffs my tear-stained face before curling up on the floor next to me.  I stroke her short multicolored fur wordlessly.  I was grateful for her presence last night.  She normally only sits still with me for fifteen minutes at a time but last night she spent hours sitting next to me.  She didn’t even get offended when I had to shift, which normally irritated her enough to make her leave in a huff.  Last night when my legs started to cramp or spasm and I had to move, she would stand up and wait for me to get comfortable before she sat back down again.  She knew I was hurt.

In the other room Sean is talking to someone whose voice sounds hollow and robotic.  I don’t know what time it is, but he should be at work or getting ready for it.  It sounds like one of his meetings, although I can’t be sure since I can’t make out any distinct words.  He must have decided to work from home today.

My back spasms cruelly as I shift my leg so it doesn’t press into the leg of the table.  I hold back a scream.  Even resting I feel like I've been beaten, like people kicked me in my back and legs for hours.  My pills are in the bedroom, so far away from where I’m trapped.  Sean is the only other person in the apartment, and I can’t call for him because I can’t talk right now, and I wonder if it would disrupt his meeting.  I take a deep breath, hissing in the air through my teeth, and carefully assess my situation.

My head is pointed towards the wall and I’m in a narrow space where it’s difficult to roll over.  My only way to escape is to sit up and drag myself towards the bedroom.  This will be difficult, because the muscles in my lower back and thighs, which I usually use to stabilize myself when standing or walking, are so sore that they are useless.  I still can’t completely make sense of this.

I had cortisone injections in February, but it’s May now.  They are good for three months.  I had them in my upper back, where the worst of my pain was at the time, where I had two bulged discs.  It’s not a good sign to need cortisone shots when you’re just 22, and believe me when I say you have to be really desperate and in pain to be willing to have someone jab you repeatedly in the back with needles while people try to keep you from moving.  It was a terrifying day but I was at the end of my rope then, convinced I was going to die soon, and I probably would have since I was taking 10 Vicodin a day, the 7.5/750 dose.  The codeine wouldn’t have hurt me but I was taking more than enough Tylenol to destroy my liver, and the pills did nothing for the pain and none of the doctors believed me.  I think they believed me a little more when I had the shots, and I went quickly from 10 pills a day to two 10 mg Vicodin that could easily manage my pain.  I rarely needed pills every day after that, and I’m still on the same bottle of pills now that I was prescribed after my procedure.

But it’s time for another round of shots.  My body told me that two weeks ago.  My mother scheduled an appointment, but I can’t go in till Thursday.  It’s Tuesday now.  I have six Vicodin left, six precious little pills that will do nothing to save me from this pain, and only one Flexeril.  I ordered refills last night through the Walgreen’s website but I need doctor approval and I’m not sure if I’ve proved myself to my doctor or if he still thinks I’m being irresponsible with my pills.  I allowed myself very few pills yesterday and it’s costing me today. 

The back has been bad for a while now.  It aches at the bulged discs in the thoracic region, where I had my injections last time, and it aches even worse in the discs in the lumbar region, which are both bulging and degenerated.  It causes sciatica, which sends nerve pain to my buttocks, hips, and through my entire leg.  I usually deal with this with Aleve and Vicodin, and I cut my Flexeril and take half when the sciatica makes my muscles spasm.  I normally find hot baths can relieve a great deal of the pain without the necessity of medicine, but that was useless earlier this week.  Our tiny, useless, 15-year-old water heater finally broke, and it took a while to convince the apartment management that this was in fact a problem. 

It’s worth mentioning that I’m a horrible slob, and to be fair so is Sean.  I’m normally the one who cleans the apartment and I let it slide badly over the last two semesters, due both to my disability and homework overload more recently.  I haven’t caught up with it since the semester ended because I didn’t know where to start.  But the owner was coming to look at the hot water heater yesterday morning, so I stayed up the entire night before cleaning.  I put away the Christmas tree that the cats had partially dismantled over the months since Christmas.  I picked up the graded papers, tests, and junk mail we had scattered all over the apartment and threw them away.  I worked hard.  Sean had done the kitchen before he went to bed.  I cleaned the living room, library, dining room, and bathroom from midnight to 7 AM.  They looked almost perfect by the time I was done.  I didn’t have time for the bedroom and office, but I could close the doors.

When Sean woke up the only thing I had left to do was the vacuuming.  But by that point I was so physically exhausted that I was shaking.  I hadn’t taken pain pills since I had started and my nerves were all screaming.  Sean was horrified when he found me, shaking from dehydration, hunger, and lack of energy.   The muscles in my legs were weak.  I remember my thighs shaking, the muscles repeatedly giving out.  Sean had to help me to the couch, get me food, and set me up with what I needed for the day before he could leave for work, because there was no way I was making it off the couch until he got home.  The landlord came at 9 and confirmed that our water heater was busted, and between 11 AM and 6 PM a newer, larger water heater was installed.  I was exhausted and spent most of my time not moving and reading the Hunger Games e-books Sean had given me to keep me busy and not depressed.  I hurt horribly, but I had accomplished what I had wanted to and that made me happy.  I was supposed to take a long, hot bath but I fell asleep from exhaustion before I could.  Hours later Sean laid down for bed and I woke up and felt the most horrible pain I had ever experienced.  I don’t know what caused it, but my thighs were now aching horribly where they had felt weak before.  I couldn’t sit up.  If you’ve ever had a torn or strained muscle, imagine feeling that in 50% of your thigh and over your entire back.  That’s what I felt, along with the normal pain in my spine that felt like grinding bones, and along with the nerve pain in my back and my legs.  I don’t know what happened but  my guess is that I had violent muscle spasms while I was sleeping and my leg muscles were damaged.

Sean carried me to the bathtub and I had a horrible meltdown when I discovered the water only got up to 90 degrees, not hot enough to relax muscles.  This triggered an argument, and by the time Sean figured out how to turn up the temperature on the heater I was angry and just wanted out of the tub.  He went to sleep and I stayed out in the living room, fuming and continuing the book I’d been reading.

The pain kept getting worse, and when I was tired I realized I couldn’t make it to the bedroom without calling him for help.  I rolled onto the floor, where I fell with a wince, and settled down for the night.  It was hard to sleep.  The floor wasn’t comfy and every which way I laid only made another part of my body hurt.  The muscles in my thighs felt like rocks under my skin when I touched them.  And then I woke to find myself trapped on the floor. 

I’m in incredible pain.  I’m hungry.  I’m thirsty.  I have to use the toilet.  I’m lonely.  I’m scared.  I have options.  I could find my pills.  I’m pretty sure they’re in the bedroom on top of my dresser.  I could call Sean, because I think I can talk now, but loudness will disrupt his meeting and I should probably only talk to him softly, which means I would need to stand by the door.  He doesn’t seem to hear me crying so I will have to be closer to get his attention.  I can’t cook so I would have to ask him for food.  I could take a hot bath.  I definitely need a toilet, as soon as possible.  Everything I need is on the other side of the apartment, and suddenly that seems like a tragically long distance.  But at least I know where I need to go.  The bathroom, office, and bedroom doors all meet at a close point, so I need to get there, ask Sean for food and medicine, and use the toilet and take a hot bath.

I know I need to move.  I try again to sit up and let out a shriek, then a hiss, then a whimper as I fall back to the pillow.  The kitten watches me, transfixed, and I sit up again, crying, and manage to get into a kneeling position before I fall flat on my face.  At least I’m pointing towards the hallway now.

I make a few more feeble attempts to stand, each ending in failure.  My legs are useless now.  My spine offers little support.  I give up and start crawling.  It’s painful still and strains my sore thighs to an almost unbearable point, and the shag carpet feels scratchy and harsh on my legs and hands, but I can do it and I can take my time.

I crawl slowly out from under the quilt, keeping my eyes down because I can’t look at the hallway and see how far I have left to go.  I feel like I’m regressing into childhood or into animalism and I hate it that my humiliation has come this far.  I don’t know how long I crawl.  I have to take a rest between the kitchen and dining room.  I start again and eventually I make it to the short L-shaped hallway.  I can hear Sean talking more clearly now but it all sounds like technical nonsense and I am afraid to ask him for anything.  I crawl into the bathroom.

The linoleum is cold on my hands.  My knee lands on the hard surface and it hurts like it always does when I kneel on non-carpeted floors, but then my knee pops out of place.  I think I scream and I lift my leg up but the knee pops back into place and I’m left lying face-down on the bathroom floor, watching strands of my messy red hair move in front of my face as I breathe.  I’m touching the toilet.

I try to sit up, but once I’m in a sitting position my back spasms and I can’t continue, even using the sink and toilet to raise myself into a standing position.  The muscles in my thighs and lower back tighten unforgivingly.  I stare at the floor in disbelief.  I should have known.  I couldn’t properly sit or stand in the living room.  What made me think it would work once I  got here?  And I am angry at myself, angry for wasting the time and energy and nearly killing myself to get to the bathroom when I couldn’t even get onto the toilet. 

I fall back to the floor, tears streaming silently down my cheeks and forming small droplets on the floor.  I hate myself for being so stupid, for being disabled in the first place, for insisting on cleaning yesterday even if it desperately needed to be done.  I have no idea if Sean will hear me from here and I hope he’s done with his meeting soon.

I lay on the floor for several minutes and I’m starting to nod off when the talking stops and the office door opens.  Sean stops in the doorway and I know he’s staring down at me and that he didn’t expect to find me face-down on the bathroom floor.

“Hi,” I say weakly. “Once I got here I realized I couldn’t get on the toilet anyway.”

“Kat,” he says in a strained voice, and I can’t tell if he’s disappointed, annoyed, or just sad to see me looking so pathetic.

“What time is it?” I ask.

“Almost 1.  I was sick so I worked from home today.”

I remember now that he’s been coughing a lot.  I hadn’t completely realized that he was sick, and I feel incredibly guilty for not noticing and for being too distracted by my own pain.  He had noticed my pain.  He’d been taking care of me.

“Do you want me to help you up?” he asks.

“Yes,” I say. “I’m not sure how to get up though.”  I try scooting closer to him so that he can grab me more easily but when I accidentally tense my right leg I scream, curse, drop still and try not to move again.  It will be hard for him to help me because I’m in a bad position and blocking the doorway.

He grabs me from behind under the armpits and pulls me into a sitting position.  My legs are in front of me.  “I can’t kneel,” I say. “It hurts my legs.  That’s why I can’t get up.”

He steps over my shoulder, putting his foot between my legs, and lifts his other leg over me so that he’s standing in front of me.  “What do you want me to do?” he asks.  “Do you want to be in the tub?”

“Need to pee,” I say. “Toilet will hurt my legs though.”

“How do you want me to help you?”

I try to clear my head, try to ignore the pain and focus on strategy.  “I can’t kneel.  You have to pull me from here directly into a standing position.”

He grabs my hands.  “Ready?” he asks.  I nod and he pulls me up.  At first it’s okay without having to use my legs but when I need my thighs to support my weight I start to fall forwards and I crash into him.  He catches me before I can collapse and I’m crying more openly now.  My cami has slid down and I’m exposed.  Sean reaches down and covers me back up, and he shifts me sideways.  It hurts every time I have to set my feet down but he manages to lower me onto the toilet in a sitting position.

“Ohgodohgodohgod,” I moan as the hard plastic of the toilet seat sinks oppressively into the flesh of my sore thighs.

“When’s the last time you had a Vicodin?” Sean asks.

“Fuck.  Last night?  I think they’re in the bedroom.”

“I’ll look for them,” he said, and he disappeared.  Alone, I use the toilet and stare at the floor when I’m done.  Sean brings me a glass of water and medicine and I take it gratefully even though I don’t know if my prescriptions are refilled or if I need to save the pill for an emergency.  This is the very definition of an emergency.

I explain to him what happened.  He sits on the edge of the bathtub.  “Do you want me to take you to the hospital?” he asks.

It sounds like a good idea.  I used to go to the hospital for my back pain, and this is definitely the worst pain I’ve ever had.  But I shake my head and smile even though it isn’t funny.  “They won’t believe me.  They never believe me.”  ERs are full of doctors who have never experienced pain that Tylenol wouldn’t fix, and a very young woman coming into the ER, unemployed and claiming to be disabled, acting abnormal, claiming to have pain but it doesn’t show up well on x-ray and she appears physically unharmed...I guess I look like an addict.  It’s hard for them to identify with me since it’s hard for anyone to imagine pain that large amounts of Vicodin won’t help.  It’s hard to believe that a 22-year-old has pain at all because that’s too young to have back pain.  No one wants to believe that the pain exists, and I don’t think I give them the emotional reaction they expect from someone who is in incredible pain.  It’s hard for people to identify with my suffering because my face doesn’t always display the emotions I’m experiencing.  I can feel the pain and I can describe it but I can’t act like a person in pain would normally act.  I tell them I have autism but they don’t know what that means, and they normally tell me I don’t look autistic or that I must be mistaken.  So doctors are useless at best, and irritating little pests who yell at me at worst.  One doctor at Memorial Hospital told me I should be ashamed of myself for thinking that hospitals were there to keep me from being in pain.  I’m pretty sure he thought I was an addict.

I close my eyes and wish that the doctors at the pain clinic could see me sooner, so it wouldn’t matter that I have so little Vicodin.  And because when I limped into their office they believed I was telling the truth, maybe because no one walks into that office unless their pain is very real.  The pain clinic doesn’t hand out oral medicine.  The only do interventional medicine, cortisone injections and the like.  Those are useless to addicts but a few days after they saw me for the first time I was walking around without help again.

“The hot water is working again,” Sean says softly. “Do you want to get in the tub?”

I nod and he helps me up and tries to lower me carefully into the tub.  I slip out of his grip when I’m nearly completely down and I land with a soft thud, but I just laugh.  “This water had better be worth it.”

It comes out pleasantly hot and I nearly overfill the tub because I want it to touch every inch of my body.  Sean sits on the toilet watching me, but I’m not good company today.  I just stare into space, wondering why I have to suffer through so much pain. 

He goes back to work and comes back when I call him to help me out of the tub.  I lay in the bed and Sean brings me the PS3 controller, my laptop, a fresh soda, my pills, even the small calico kitten.  I check my e-mail and to my relief my doctor approved the refills and they’re waiting for me at the pharmacy.  I haven’t eaten since yesterday in the afternoon, so Sean takes my wallet and heads to Walgreen’s to pick up the prescription.  I want him to have my ID to prove I authorized him to get my drugs.  He comes back with a sandwich for Subway and the drugs, and says they only asked him my birthday.  But he’s picked up drugs for me before.  When I really need them it usually means leaving the house is far more difficult.

He cuddles with me and I can feel what little relief the Vicodin had offered already wearing off.  I tell him that, and I try not to whine because I know he can’t do anything about it.

“A day and a half,” he says, stroking my messy hair.

I hug him and nod, but I don’t know if I can make it till Thursday morning.  Because I remember now something that I had forced myself to forget in February when the last round of injections healed my pain.  I had forgotten that there is a certain level of pain that makes you certain that pain alone can kill you, and if you stay there long enough you start to accept your fate. 

“I guess we’re just going to have to prepare for this to happen every three months,” Sean says.

“Yeah,” I say softly, and I wish I could defeat the pain altogether instead of banishing it for a short time.  But this is the best I have.  I hope pain can’t really kill a person over time.

An Open Letter to Robert MacNeil and PBS

To Whom It May Concern:

Hi.  My name is Kathryn Bjornstad, and I am an autistic woman.  I am a senior at the University of Missouri at St. Louis, a history major, due to graduate in December.  I’m 22 years old, and I am working on setting up a chapter of the Autistic Self Advocacy Network in St. Louis.

This month, as I’m sure you’re aware, is Autism Awareness Month.  As many feel awareness is no longer enough, it is also Autism Acceptance Month—and I am more in support of the latter.  Autistic people, like many other disabled people, are often discriminated against and ableism is allowed to go unchecked and unpunished in full view of the public, even in the media.

Which brings me to my point.  I saw a piece today on your autism documentary.  And I wasn’t too happy.  A lot of people weren’t happy.  You see, I have come to realize over the course of several years that my autism has not held me back nearly as much as ableist stereotypes of autistic people have, and the myths of autism are so pervasive that I am even discriminated against when I go to see the doctor. 

I was home alone when I read the article where you described autistic people (like me) as missing a key ingredient in being human, the most important ingredient:  Empathy.  I was stunned, hurt again by this stereotype that gets flung out every so often in the autism debate.  Autistic people don’t have empathy. 

When I found out I probably had autism, I was 17.  I remember looking it up on the Internet and being horrified by the descriptions I found of emotionless people, children turned into empty shells of people.  They didn’t have empathy.  That was what I was told.  And I was terrified that I might be one of them.

But things changed.  I grew up.  I found out more.  I met other autistic people.  It turns out that empathy thing is a complete and total myth.  That’s right, you just wrongly accused almost 1% of your audience of being emotionless when they aren’t.  There isn’t a real, concrete definition of empathy and it can be used to describe a number of different things.  But the stereotype of autistic people living without empathy is as harmful as it is pervasive.  When I try to stand up for myself, I will hear mothers of autistic children say that I can’t possibly know what I’m talking about.  I don’t understand their position because I lack empathy.  My views can therefore be entirely ignored, no matter what I say, and no one sees the irony.  I might perceive someone who calls another person emotionless without thinking first of whether it would hurt the person’s feelings as, well, lacking empathy.

I cried reading your article, watching the interviews, thinking of the millions of people who would see it.  The so-called educational documentary completely ignored the views of autistic people, asking only those who knew them what autism was.  And because of the blatant ableism inherent in the interview selection, no one who watched it would suspect that autistic people have feelings.  Millions of people will now feel free to fling that insult at people like me, say I don’t understand them because of my lack of empathy when I cry about it, and use it to diminish the importance of our words.

And the description of autistic people as causing random violence is even worse.  The vast majority of the autistic population is unemployed, and do you wonder why?  It’s not because we’re violent—we’re often the victims of violence, often from our caregivers and our parents.  It’s because the stereotypes that are spread about us are so  horrible that no one would ever consider hiring us, so even autistic people who are searching for jobs or who are qualified for jobs will often find themselves overlooked.

My fiance came home this evening from work at 4:00.  We had dinner and talked, and he was tired, so he decided to go to sleep.  I curled up next to him and laid my head on his chest.

After a few moments of silence, I said, “Sean?”

“What?” he asked, the words muffled by his sleeping mask.

“What’s empathy?” I asked. “Isn’t it like sympathy?  Why do people say I don’t have it?”

He unhooked the mask and set it aside.  “There’s two definitions,” he said. “One is feeling what other people are feeling, feeling sad when they’re sad, and so on.”

“But I have that,” I said.  “I hear about someone’s family member dying and I’m sad for days, even if I didn’t know the person who died.”

“I know,” Sean said.  He propped himself up on his arm to look at me.  “The other definition is to be able to tell what someone’s feeling by looking at them.  And that one…you have a little bit of trouble with.”

I chewed my lip, remembering the cartoon smiley faces I’d studied in grade school and how the emotions looked so different on human faces.  “But…I try,” I said. “And sometimes I can tell.  And I try to imagine how a person might feel given what’s going on at the time.”

“And that’s empathy,” Sean said. “You have it.”

I sighed.  “But…that guy from NBC.  He’s going to say those things and people will believe him.  Even though it’s not true.”

“He’s a dick.  Lots of people are dicks.  You don’t have to listen to them.”

“I’m supposed to fight back against things like that,” I said.  “Children are going to see that program and think…” I wiped away tears.  “They’re going to see it and think they’re monsters.  And so will their parents.  And it’s going to hurt them.  Not me, because I’m an adult and I know better, but it will hurt them.”

Sean stared at me and I closed my eyes, letting tears roll down from my cheeks onto my arms.  “That’s not fair.  You can’t go on TV and say—and say that black people or Muslims aren’t human.  People wouldn’t let it happen.  So why is it okay for us to not be human?”

“Hey.”  He stroked my cheek.  “It’s going to be okay.”  I kept crying and he held me as I calmed down, and eventually he fell asleep.  I couldn’t sleep.  I started writing.

You say I have no empathy.  What I want to know is, where is your empathy?  Where was your empathy when you stood in front of a camera and told millions of people that 1 in 150 people were barely human, that many of us were violent, without thinking of how serious the consequences would be for us?  Autistic children are being arrested by people who don’t understand what a meltdown is.  Autistic people are unable to get jobs.  Autistic people are being subjected to horrible and unscientific treatments in the name of curing autism.  That is not justice, and by failing to speak with autistic people themselves you are failing to present an accurate picture of us.  By spreading untrue and harmful stereotypes you are encouraging discrimination against us. 

Please consider speaking with autistic adults about how they see themselves and their disorder, and you will understand why your words are so horrifying to us.  You will understand how wrong you are about autism and empathy, and you will learn a lot more about autistic people than their doctors, teachers, and parents could teach you.

I am Kathryn Bjornstad, and I am a human.  I deserve your respect.  I have not yet received it.  I dare you to change my mind about you.

Sincerely,

Kat

Are you sure you're autistic? Because I can't tell.

Another trip to the doctor, my tenth or so since January.  It had been a long time since I’d been in this office, well over a year since they’d seen me.  The nurse in the office was always hyper, cheerful, and bubbly, and usually made me laugh.

She was taking my blood pressure when she noticed my purple hair.  I told her I’d dyed it that way when I was a teenager, but let it go red (as it had been when she’d last seen me) so I could find a job.  Now I had decided that since I wasn’t going to get a traditional job and wanted to do autism advocacy, I was okay to dye my hair purple again.

“Well, that’s great!” she said enthusiastically. “And I’m sure those kids could use some visual stimulation.”  She went on a bit about autistic children needing help.

“Um.”  I bit my lip.  I was offended, but bad at confrontation, bad at explaining why I was offended.  I’d said advocacy, not working with children, and the assumption seemed to be that the only kind of work you could do with autistic people was with small children who desperately needed help (probably from normal neurotypical people who were saints for working with them). *

Obviously she didn’t mean to offend me, and I knew that.  It’s not that she was a bad person, or that she was trying to be rude, but the assumptions are some I see often, that seem to slowly eat at me.  And her intentions didn’t change the wrongness of what she’d said, or the fact that it hurt my feelings.

I chose my words carefully.  “Actually, it’s not working with children.  It’s like, disability rights stuff.  Before I got sick I was trying to start an Autistic Self Advocacy Network chapter in St. Louis.”

The nurse made a strange face.  “Disability rights?”

“Yeah.  I’m—actually autistic.”  I drew a deep breath, not able to read her expression to know what variation of a semi-offensive statement was coming next.

“Oh, you’re autistic?  Are you sure?”

I released the breath.  “Yes.  Yes, I am sure.”

“Well, honey, I can’t even tell!” she said brightly. 

She said other things, and I gave monosyllabic responses, too distracted and fearful now to be polite.  The nurse had done to me what several people have done.

People seem confused as to why I (or any other autistic or otherwise disabled person) would find that offensive.  It’s hard for me to explain in the moment because I need time to prepare that kind of explanation, and it deals with several different levels of ableism.

The first question, “Are you sure?”, may seem like a very logical question to some neurotypical people when speaking to people with mild autism.  It may not seem offensive to them when they use it, but it really is.  Why?  Because yes.  YES, I am fucking sure.  You may have to ask that question of yourself, “Am I sure she’s autistic?” but to me, the person who actually has autism, it’s something I live with every day and not really something I have to sit and wonder about anymore.  I did that wondering years ago, and I am over it the “Am I autistic or not?” stage.  If I wasn’t, I wouldn’t say, “I’m autistic.”  It was a really difficult conclusion to reach, but there is no longer any question in my mind that I’m autistic.

I realize that you weren’t sitting there with me when I was two and my mom was calling child psychiatrists, when I was six and one finally agreed to see me, throughout my childhood and teen years where it was very obvious something was wrong but we didn’t know what.  I realize you didn’t see the doctors give me the news, see the fit I threw, see the slow process of admitting I was autistic and discovering what it actually met.  I know you don’t realize what having autism is like for me.  But that doesn’t mean you get to ask me whether I might be mistaken.  (Unless you’re my psychiatrist or psychologist or something, but they’ve never asked me if I’m sure.)  You’re implying, by asking if I’m sure, that there is a chance I am so stupid I think I’m autistic when I’m actually not, or that you doubt I actually have the disability that I have.  The tone is often incredulous.  People just can’t believe that an autistic person could be like me, which is offensive in itself, and that really ties in with the statement they make when I inform them that I am sure I’m autistic.

You can’t even tell that I’m autistic?  I kind of figured that when you asked the first obnoxious question.  Now you’re again calling the legitimacy of my disability into question, again questioning whether I am capable of understanding whether I’m autistic, but something else is going on too. 

You can’t tell?  Why not?  Obviously I don’t expect anyone to be able to identify autism by sight.  I don’t expect every person to be an expert.  But what you’re saying is you expect autistic people to look or act a certain way.  That is so extraordinarily presumptuous.  I don’t conform to your ideas about autism because your ideas about autism are wrong.

My disability is a huge and undeniable part of my identity.  So it hurts when people say they can’t tell I’m autistic.  Which is funny because if someone said, “Oh, you’re black?  I can’t even tell!” most people would probably think that was offensive.  And I’m betting if I responded with, “Oh, you’re not autistic?  I can’t even tell!” that would be seen as rude.  In fact, people who are mistaken for being disabled when they’re not are often massively offended. 

Why is okay to say “I can’t tell” to an autistic person, but it isn’t allowed when the situation is reversed or it isn’t allowed when referring to other unnoticeable identities?  I feel like it’s just another example of how disabled people are seen as less human and less liable to be hurt than “real” people. 

It’s also an example of how a disability not being noticeable is supposed to be a compliment.  What the nurse was saying when she said, “Don’t worry, I can’t tell” was partially that although autism is bad, it’s okay for me because she can’t tell that I have it.  She’s actually saying, “Lucky you, you’re not as bad as other autistic people because your autism is not obvious.”  That’s so not a compliment!  You’re actually insulting me (and all other autistic people), and at the same time belittling my experiences as an autistic person.  In fact it’s so offensive that I’d rather someone say, “Oh, that makes a lot of sense then,” admitting that they actually noticed my disability.  I realize that kind of honesty is taboo to many neurotypical people, but at least it’s not offensive.

The appropriate response to someone telling you, “I’m autistic,’ is to say, “Oh, okay.”  And if you say something offensive, please apologize and I’ll forgive you.  If you aren’t autistic or aren’t close to anyone who’s autistic**, it’s probably best to assume that the person who is talking to you, who says he or she is autistic, who actually has the disability, probably knows way more about it than you do.  The message you should be taking away is that maybe autism doesn’t always present how you thought it did.  Maybe you should think about researching it if you’re interested.  But no matter how surprised you are, it is never okay to tell someone that they don’t look or seem autistic, or to ask them whether they actually are when they’ve already told you they are.  This goes for other disabilities as well.  No one deserves that, and the fact that you didn’t mean to be a jerk doesn’t mean it’s not a slap in the face.

So nod understandingly or express your surprise in a non-offensive way***, or do anything else, but please for the love of God, do not do what that nurse did.

So I said nothing to the nurse.  I could have.  I sure as hell wanted to.  But I’m a coward.  I felt horrible and scared and sick, and my mouth froze and it was hard to say anything.  I knew if I said anything I would be the trouble maker, because it’s the duty of disabled people not to hurt non-disabled people’s feelings by pointing out that they’re ableist.  I knew she didn’t mean to offend me, and I knew it didn’t matter.

That was three days ago, and every day since I’ve been plagued with irritation that I didn’t say or do anything.  Because I didn’t correct her she will never learn that she hurt me, or why it’s offensive to say things like that.  She got to go on her merry way, completely unaware of her mistake, and I am left to deal with the consequences.  Because this is not the first time this has happened.  It will happen again, and each time it happens it builds up a little more in my system and gets more annoying.

I can see how someone who is unaware of disability rights issues could look at this and think I’m just too sensitive.  But it’s part of a bigger freaking picture.  The reason oppression of disabled people happens is because ideas like this are floating around in the air, in one form or another.  Most people know that racism very rarely looks like swastikas and white hoods.  A lot of times discrimination is in the way we talk about people, as if they’re (even by no fault of their own) lesser than us, that they should be subject to greater scrutiny, that we’re normal and they’re not.  This more commonly occurs with very minor interactions like the one I had with the nurse.  To her the idea that autism is an acceptable neurology, the concept that someone might actually like being autistic or would be offended by someone saying, “Don’t worry, I can’t tell,” was so radical that she said those things to me and expected me to be either happy or okay with it.

Racism, sexism, homophobia, transphobia, religious persecution, ableism…all of these things start on the small levels where the nurse was with me, and they should be fought on that level.  I think it’s most important of all the fight discrimination on this level, because it’s the level we often overlook in favor of more obvious racists and ableists to point our fingers at.  But you can’t fight those people who know they’re discriminating and don’t care.  You can change how people think about things at the most basic level, and that can stop it from evolving into, “Well gays shouldn’t marry” and “Well, disabled people just need to get off their lazy asses and work.”

I am ashamed that I didn’t stand up for myself.  I’m embarrassed that I didn’t call out the woman who, however well-intentioned she was, discriminated against me and made me feel outcast.  Because if I can’t face these demons in my own life I can’t understand how I can expect to help other people fight.  And I’m going to have to work on that.  A year ago I was even more fragile than I am now.  I never wanted to confront anyone about anything, and people walked all over me.  I’ve come a long way and I can see I have further to go.

I’m not giving up yet.  So this is my response to the nurse and to everyone else who thinks asking those questions is acceptable.  She may never actually see it, but dammit, I have to say it. 

*I often wonder about this misconception, that autistic always means a child.  I don’t know if it’s that certain groups –coughAutism$peakscough- have so successfully pushed the message that autistic children need help that people can’t imagine that autistic adults exist, or if it’s just that even autistic adults should be referred to as children.  That’s the same reason people with developmental and intellectual disabilities are often referred to as having the mental age of a 4-year-old or something.  It’s misleading and obviously there’s a huge difference in how 4-year-olds and disabled people act, but for some reason people still do that.  I think it’s worthy of a post all its own, but I think Amanda Forest Vivian has already written on it extensively and far better than I could.

** No, you are not an expert because your second cousin twice removed is autistic and you see her sometimes at Christmas.  Assuming you know what autism is like based on your experiences with one autistic person is a fallacy.  I’ve learned what I have about autism based off not only my experiences, but on the experiences of many, many other autistic people I know. 

***When I say it might be okay to express your surprise non-offensively, I mean basically it might be okay if someone said something like, “Wow, I had certain presumptions about autistic people that must be incorrect and while I apologize for my unintentional prejudice, I’m grateful that my views were challenged and I can use it as a learning experience.”  Okay, it doesn’t have to be that formal.  Actually better not to do this at all.  I’m just saying that I am aware there might be a possible way for you to say you’re surprised to learn someone is autistic without being offensive.