Thursday, April 1, 2021

They Say To Autistics…

Photo © Emma Dalmayne
[image: Emma Dalmayne, a woman with brown skin and dark hair
wearing a nose ring and a blue sundress, looking into the camera.]

by Emma Dalymayne
They say to autistics:

Make eye contact 

Look at me

How am I meant to know you can hear me if you don't look at me?

Not like that

Not like that!

Ok you're staring now…

Why are you staring?

That's inappropriate eye contact!

Stop staring you look like a freak.

They say to autistics:

Talk to me

You are rude when you don't answer

Can't you talk?

No I'm not looking at your text on the screen you need to learn to talk! 

Stop talking so much!

I've heard about this Janice it's called "info dumping"

So rude. 

They say to autistics:

Express yourself 

No stop moving like that it's weird!

Why are you rocking? 

You look mad when you do that.

You need to focus

Stop moving

Will you stop fidgeting?! 

Ugh, why are you so closed off?

Stop flapping.

They say to autistics:

Er what's wrong with your hearing?

What are you listening to? 


So.... just nothing?

We aren't on a building site mate you don't need ear defenders.

Too loud? 

What's too loud I can't hear anything?

I'm not talking to you if you wear those you look weird. 

They say to autistics:

Stop screaming like that!

Stop crying there's nothing to cry over! 

I've read about this Janice it's called a "meltdown" 

So a tantrum then.

Sort of but not

You would think by that age they would learn to control themselves...

Oh my god JUST GET UP! 

Why aren't you talking if you are upset just say there's no need to cry.

You need to communicate.

They say to autistics:

So what's your talent?

So what are you good at? 

Well you must have a special talent they all do,

I knew this one person who has autism really good at maths, do you like maths?

Why not?


You need a hobby

Not like that that's obsessive! 

Less is more.

They say to autistics:

But we use the puzzle piece to represent you because you are puzzling you see?

Er no it's a puzzle 

It's not actually up to you is it? 

But the puzzle piece is known universally no one knows that sign.

Maybe things will change one day but at least people know what this is yeah? 

"But he's my little puzzle piece Janice, that's what I think anyway."

It was made by the National Autistic Society and THEY would know wouldn't they? 

They say to autistics:

No... first this THEN that.

I know you are pulling me to the fridge but you have to say the word

Thats not communicating is it? 

No no you do the task THIS way THEN you get the treat

So what if it's done?

Well you did it the wrong way it's this way.

It may look ok but you made it in the wrong order!

Yes thats right jump three times then you get the treat.

Ok so listen, screaming and pulling at the door handle tells me nothing! 

You need to say "Out!" Can you say "Out?"


They say to autistics:

Why aren't you normal?

What's wrong with you?

I heard you can cure autism with bleach it's a parasite that causes it.

You are not autistic

You have autism

Don't let it define you

You are more than just autism

I thought you grow out of that?

But that's a kid's thing

Control yourself

You are NOTHING like my neighbour's friends son now he is REALLY autistic

You must be high functioning

I know all about autism I saw this programme

"Janice she can't understand you no use talking to her, she can't even talk."

Low functioning. 

Never amount to much

Bless you I'll pray for you

Have you prayed?

Try it the Lord will save you

Not like that

It's the vaccines

Have you tried Homeopathy?

Camels milk is meant to help.

You can overcome autism just work harder 

They say to autistics:

You must be hungry 

Well if you are hungry you will eat it

There's nothing wrong with it eat it

What do you mean you forgot to eat?

Have you drunk anything?

Why not?

You can't play on that phone all day you need to eat 

Er no it's the same brand 

No really it is!

Ok it's not.

You surely aren't eating that again?! 

No you can't have that again

I don't care if it's all you want to eat

Try this…

Why aren't you eating?

Well obviously she won't starve herself Janice she will give in soon…

Listen to autistics.

Friday, March 26, 2021

Getting the (Second) COVID-19 Vaccine While Autistic

COVID-19 immunizations begin
Photo © bcgovphotos | Creative Commons / Flickr
[image: Person with light skin and dark hair in a ponytail, wearing a blue
surgical face mask, at a desk with hand sanitizer and vaccination paraphernalia.
They are looking at someone off camera, and pointing to their right.]

By Kate

On Monday, March 15, I was lucky enough to receive my second dose of the Moderna COVID-19 vaccine. My experience in getting the first dose of the vaccine had gone pretty well, but I have never been an optimist or a pessimist. I am a realist. For me, the glass is not full or half empty. For me, the 16 ounce glass contains 8 ounces of 52° tap water from Concord. (And yes, that town is deliberately chosen, because I have serious opinions on the taste of various places tap water, and their tap water does not taste that good to me.)

I have heard and read that the second dose of the Moderna vaccine can be very difficult for some people and that the side effects can be quite hard to deal with for a day or two. I had hopes that I would not have to deal with bad side effects, but just in case, I prepared. I bought ginger ale, a sports drink, and crackers. I talked to my doctor about what painkillers to take. And most importantly, I arranged to stay with my mother, who has already been vaccinated, for a few days after I received the vaccine, just in case I needed help in taking care of myself.

And thus prepared, I returned to the same pharmacy where I had received my first dose to find that there was no line this time. They have now worked out all the kinks in the system, and efficiently scheduled and injected so that I had no wait. Except, of course I had a wait, because my fibromyalgia in my arms means that I needed the shot in my thigh. Despite the technician’s assurances from the last time that the notes in my chart would mean that my next dose would go smoothly, this new technician also felt the need to do about 15 minutes worth of research and talking to people before she was willing to inject me in my leg. However, just like last time, the research quickly assured her that it was okay, and after taking my temperature and swiping the spot with an alcohol wipe, I got the injection, and went to sit in the waiting area for 15 minutes.

It is so odd to me that almost exactly a full year after the stay-at-home orders started, a year that was harder than almost any other year of my life, a year that I honestly didn’t know if my friends, family and I would live through… that this tiny vial of chemicals could change my life so much. It was weird that the sky and the grass and the clouds all looked the same. I felt almost as if color should be brighter, as if music should be playing, balloons and confetti flying through the air. Instead there was just me, surrounded by Plexiglas and strangers, wondering why my emotions didn’t feel as momentous as I expected them to.

Still processing these feelings, I went to my mom's. That night, I was tired and I had a headache, but I am often tired and I always have a headache, so that was not a surprise. The injection site was very sore, and I could not lie down on that side, but it was totally bearable—so far. 

The next day I woke up at 5 AM in a lot of pain. My headache felt different than my normal headache. My skin felt as if it was on fire, but it did not look any different than it usually does. I got up and had breakfast and took some Tylenol. I continued to feel worse as the day went on. By that afternoon my fever reached 101°, and I could not read or watch TV due to the pain. I did not want to eat because of the nausea, but I forced myself to keep drinking. I was utterly miserable, cold one minute, hot the next. I decided that I hated the Moderna vaccine, but then felt very guilty because I knew it was such a good thing.

It was sort of like being run over by an ice cream truck. Being run over is awful, but ice cream is wonderful, and the truck full of ice cream to give to everyone is even more wonderful. I had a lot of weird thoughts like this. I kept looking up the side effects, and everything I read said that they would pass. I held onto that fact, took more Tylenol, and reminded myself over and over about how lucky and fortunate I was, because this vaccine would not only save my life but by preventing me from transmitting Covid to others, it would save their lives, too. I tried not to complain. I failed. Luckily, my mom did not mind.

I lay on the couch and I listened to my mom talk to various relatives on the phone and came to the weird realization that just because your kids are in their 30s and 40s, does not mean that your parents spend any less time talking about you to other people. My mom kept telling me to drink water to "flush the fever/virus out." I said that sure, with a normal fever you wanted to do that, but what if I drank too much and I just peed the vaccine out instead of the fever? We went back and forth about this for a while, and later I found out that we were both wrong. You should drink water during a fever, to keep hydrated and to keep your body healthy, but you can’t pee out anything like a virus or a vaccine, because those are in your blood.

I was not hungry, but I forced myself to eat crackers, cheese and fruit. I went to bed, hoping that I would wake up the next day feeling better, and I did! I felt much better. My fever was only 99.7°, my head was clear, and my pain levels were much, much more manageable. I went home. By that evening, my fever was gone completely, even without Tylenol. The injection site on my leg is now the size of my fist, hard, red, and sore, and from my experience with the first injection I know that will last for a couple weeks. My headache is still slightly worse than usual, but my usual energy has returned.

From the accounts that I’ve heard and read, my experience with the second dose of Moderna was slightly atypical in that I did not have the extreme fatigue that many people have. I just had a lot of pain. My nausea was also never that bad. I was also lucky in the fact that I am one of those autistic people who, when I get a high enough fever, I feel very chatty and sociable—so even though my body felt like a pile of crud, my mind was always able to carry on a conversation and be aware of the fact that I was lucky, and that this vaccine would do very good things for me.

I actually think that autistic people are probably better equipped to deal with vaccine side effects than  other people. This is because we are used to our bodies not doing what we want them to do. We are used to getting the super rare side effects, we are used to needing more rest and downtime, and many of us are very used to dealing with pain. I was not expecting to have such a high fever, or for my entire body to feel like it was on fire, but as a realist I accepted that these side effects were not uncommon and I accepted the scientific and anecdotal evidence that said that they would go away. Autistic bodies may be weird, but they are not that weird. Even though it felt like I would be in agony forever on Tuesday afternoon, I knew that was just a result of my high pain levels, and that there was zero chance of that happening.

I am so, so glad that I got this vaccine. I am so excited to do things again. I am not going to any festivals, or even restaurants for that matter, but I am having an in-person doctor visit next week, which after a year of almost exclusively tele-visits seems like a somewhat festive occasion. My mom and I are also planning on traveling two whole hours away to see my niblings at some point the spring. I have already started planning what I will bring them to re-confirm my place as the Best Aunt Ever.

And so, as the old saying goes, the pandemic began its downward descent for me not with a bang, but with a silent injection. Even as it continues around the world, I know that my chances of dying from it are now almost nonexistent, and this relieves my anxiety to an enormous extent. I am no longer terrified of strangers on the street. It took me a while to figure this out, but I am feeling hopeful, and I cannot remember the last time I felt hopeful. 

I am hopeful that soon, I will be able to smell that wonderful, amazing new baby smell and hold my tiny relative's chubby hands again. I am hopeful that this horrific hurricane we are in will slow down and let us all breathe. I am hopeful, and I am above all grateful to this opportunity that I had. A single day of misery is nothing, nothing compared to Covid.

Although I am not Jewish, it is Passover this weekend, and so it seems entirely appropriate to end this with not the traditional "Next year in Jerusalem" but, "This year in person. This year, in person."

I hope to see you soon.