Becoming: Autism Style

I am a reader. At three years old I surprised my parents by reading full sentences out of nowhere, and the rest was history. These days, ebooks from the library fuel my need to read. The only downside to library books is that new or popular books can take months to come in.

I waited fifteen weeks for Michelle Obama’s book, Becoming. It took me a while to get through (thank you midterms), but I was really happy about a couple of things. One, although she spells it differently than me, her nickname is Meesh/Miche too. Guys, I’ve got a FLOTUS nickname! Secondly, there’s always the worry when you learn a lot about someone that it will ruin them for you, but I can confidently state that I still want to be Michelle Obama when I grow up.

Towards the end of the book, she was talking about Barack, and she said: “Being president doesn’t change who you are, it reveals who you are.”

I immediately recognized that this doesn’t only apply to presidents. My brain went straight to “diagnosis doesn’t change who you are, it reveals who you are.” And that makes sense, right? I know that when I was diagnosed with Autism, it didn’t turn me into an entirely different Meesh. It didn’t even alter the Meesh that I was. It just showed parts of who I was in a new light.

And I think that this was a fantastic thing. Because I could have looked at some of my personality traits that I now knew to be autistic, and suppressed them. I could have taken that attitude of ‘well, I might not have a choice in having autism, but I have a choice what people see of me.’ I could have. I think it might have killed me.

Instead, I celebrated. I am how I am for a reason. And I am not alone, there are others like me. I put my money behind the fact that the people who cared about me would keep caring about me. I never expected that strangers on the internet might accept me and care about me too.

This is not to say that I don’t get upset or frustrated. Hell, I get frustrated every day. Some days the world seems impossibly unfair, and it seems like everyone else can do things more easily than me. It seems like I’ll never achieve my goals. Some days I’m not sure what my truth is, and that hurts.

In one of the last chapters of Becoming, Michelle writes

“So many of us go through life with our stories hidden, feeling ashamed or afraid when our whole truth doesn’t live up to some established ideal. We grow up with messages that tell us that there’s only one way to be American—that if our skin is dark or our hips are wide, if we don’t experience love in a particular way, if we speak another language or come from another country, then we don’t belong. That is until someone dares to start telling that story differently.”

I don’t particularly care how American I am, but what struck me here was that even if I feel like people can’t see the real me, or that I’m not living up to expectations (usually ones that I’ve set for myself), it’s ok, because there’s one thing that I know I want.

I want to tell the story differently. I want to show people that there are many ways to be autistic and that none of them are tragic. Autism doesn’t mean life is over, it means life is different. And no matter what anyone says, we all still belong.

Three Wishes

I’m walking along the beach, looking for sea glass, and doing my best to ignore the grains of sand that have worked their way into my shoes. I see something in the distance, glinting in the sunlight, and I dash forward, hoping to find more glass for my collection. As I reach for my treasure, I realize that it is a fully intact bottle, not the rough and tumble fragments I’ve been searching for. Bottle in hand, I try to clean the sand off the bottle, when it disappears with a POOF.

In front of me stands what I can only describe as a Man/Moose hybrid, and when I manage to drag my eyes away from his massive antlers, I see him gazing at me, expectantly.

“Well, what will it be?”

I have no idea what he’s talking about. I figure if I don’t respond, he’ll explain himself.

“I don’t have all day here, you know.”

I’ve lost my words. It figures that a fantastically magical being would render me non-verbal. I cross my fingers that he understands ASL, and I sign DON’T-UNDERSTAND.

With a great huff and shake of his head, he says “Your wishes. You have three. Use them wisely. ” Under his breath, he adds “Ugh, mortals.”

Thanks to a childhood Special Interest in mythology, I know that genies are rarely benevolent. These tricksters never have your best interest in mind, and take joy in warping wishes. I know I will have to be careful.

One thing that I never understood about wishers in stories was why they never used their first wish to make sure their remaining ones were granted accurately. I tell this to the Moose Man and his eyebrows furrow.

“You would waste a wish like that? I know you, mortal, and you have too many problems to be wishing for precision. In fact, I’ll make you a deal. You use me to wish away the demons that plague you, I give you my word that I’ll stick to the spirit of the wishes.”

Demons? Can those antlers let him see something that I can’t? Am I infested? I feel itchy just thinking about it.

Before I make any decisions, I definitely need to know what he means by “demons.” Again I sign DON’T-UNDERSTAND.

“Your brain, it is different from those of other humans. It causes you pain from your senses, confusion from social interactions, and despair from living a world that is not meant for you. I can use your wishes to take all of that away- why would you wish for anything else?”

I am stunned. Does he not realize that by taking away the bad, he would take away the good as well? Yes, I experience sensory hell, but there is sensory heaven in my world too. The joy from my special interests outweighs the struggles I have with things like socialization and executive dysfunction. And most importantly, changing how my brain works would change who I am. Who would wish for that?

I have to think carefully about my wishes. They need to be so clear that he can’t warp them, and they have to benefit not only me but everyone in my community.

He paces and glares while I take my time, but eventually, I am happy with my choices. I turn back to him and say:

“I like who I am, and would never risk changing that. Here are my wishes, and I hope they reflect that.”

  1. I wish to be included in my own Advocacy. I know myself best. I know my needs and struggles, and I need to be considered an expert in the field of myself. We will never make progress unless we give precedence to the voices of personal experience.
  2. I wish for Accessibility. Many of the problems that I experience could be easily resolved by people willing to meet me in the middle. All people with disabilities would be able to accomplish more if more of an effort were made to see weaknesses and then find solutions to balance them out. It’s possible, and more of an effort needs to be made.
  3. Lastly, I wish for Acceptance. Everyone deserves to be respected for who they are, and no matter what their abilities are. I don’t want people to make pity-eyes at me, and I don’t want people to think that the way my brain works is a tragedy. I am who I am.

He looks and me solemnly, and after a few moments replies “As you wish.”

All around me, lights swirl around me, and when I’m practically surrounded, I hear another great POOF and

I wake up in my bed. Half asleep and bleary-eyed, I try to remember the Moose Man, but all I can recall is his ignorance and his massive antlers.

A Desk Garden

My desk is a mess. I cannot even see its 2×3 surface.

It is not enough to hold me.

On a good day, its piles and cups are contained, like organized chaos.

Today is not one of those days.

The piles slide and the cups vomit out pens without my permission.

I ignore it for now.

The landslides begin, I can no longer ignore the journals and index cards and paperclips.

It’s time to tend my garden.

Everything has a place and must return to it.

But it can’t be too clean.

I operate well in a space that is messy-but-organized

So the architecture of my paper towers must be sound.

But nothing lasts forever, and soon I know that the inevitable will happen.

It will be time to tend my garden again.

 

 

More Than Entertainment

What happens when something meant to entertain becomes something more?

I saw Star Wars: The Last Jedi last night, which I’ve been avoiding for a while now. Partially because I couldn’t bear to see Carrie Fisher in her last role, and partially because I was standing in line to see Rogue One when I heard of her death, and I’m a little superstitious (and not ready to lose Mark Hamill yet.)

I cried at the first scene.

Star Wars was a Special Interest that spanned my entire childhood, and I loved Princess Leia for being everything I had been told a princess wasn’t supposed to be.

As an adult, I still love Princess Leia, but I love Carrie Fisher even more. She dealt with a lot of shit in her life, and she wasn’t afraid to talk about any of it.

When I got my Bipolar diagnosis I wasn’t afraid, because if Carrie could live with it, so could I.

Her death hit me hard, and I don’t know how long it will be before I can read her name or see her face without tearing up.

She was so important to the mental health community, and to me.

May the Force be with her, always.

Plumbing

I often imagine my energy reserves a large basin that funnels my daily energy where it needs to go. In my mind, the energy looks shimmery and silver, glinting whenever it hits the light.

When my reserve is full, everything is good. I feel like the world is my oyster, and I can do anything and everything. This feeling is brief and fleeting, because from the moment my eyes open, the fluid starts getting sucked away, and I have little say in where it goes.

Each part of me requires its own set of tubes, and the older I get it seems, the more there are. The ones that draw most heavily are the tubes labeled Autism, POTS and, Mental Health.

As the energy shifts from shimmering silver to a matte purple, gravity pulls it down the mental health pipes. It pulls enough drops to make sure I take my meds, another few drops toward meeting my food exchanges and following my meal plan. Yet more drops into the well of self-care.

Already I am tired.

POTS rejects the pull of purple and makes a subtle change from iridescent silver, to gun-metal grey. This liquid leaks rather than drips, oozing down chutes that prevent me from fainting. The ironic thing about this is that in trying to give me energy, my body steals more than its share from my reserve.

The autism energy oozes, never staying color for more than a handful of seconds. It squeezes its way through narrow pipes, in an attempt to balance my sensory input, understand and imitate social behavior, and to do things like remember where my phone is (in my hand), how to make coffee (in my defense, the filters were in the wrong place), and figure out if I’m hungry or not (I am, I think?).

After all of this, there is a spoonful left in the bottom of the tank. Just enough to get myself to bed, and prepare for tomorrow.

I wish I knew how full the tank would be when I wake up. Some days there’s an excess, and I can take a walk, and some days I’m scraping the bottom before lunch, and I won’t be able to stand for the rest of the day.

My energy plumbing is a little broken, but it is mine. Some days I’d like to borrow yours, but I know in my heart that it wouldn’t be the same. My plumbing, with its tubes and its pipes, is as much a part of me as my soul. Both can be problematic, but hey, so am I.

 

Holy Guacamole

“Do you want guac with that?”

Oh how I wish I could

I have sweet memories of the

Creamy richness of avocados

The contrast of hot chiles

Of sharp lime

And the coolness of guacamole

Mexican food has not been the same

Since adulthood came

And the hives arrived

Oh how I want guac with that

But I am allergic to avocados

Almost Functioning

Neurotypical people seem to love using functioning labels as if labeling someone as high or low functioning makes them feel safer because they can put us in neat little boxes. That they can convince themselves that we’re not scary anymore because we’re predictable.

“Of course they can’t achieve that, they’re low functioning.” “They don’t need any assistance, they high functioning.” “They can’t understand you, they have the mind of a child.” “How can they be doing so poorly, they’re so high functioning.”

They call me high functioning, which to them means that I’m almost good enough to be like them.

This is what I hear when I’m called high functioning:

You’re too good for help, but not good enough for me to accept you

Please tell me that high functioning means you don’t do any “scary autism” stuff

You’re better than those autistics, but not as good as me

If you can talk now, you can talk all the time

You don’t act the way I expect someone with autism to, but you don’t act like me

Because I couldn’t tell you were autistic, I’m just going to ignore it

You can do some normal things, so you can do all normal things

I don’t care that “passing” is an energy drain if you can do it, you should

Functioning labels don’t mean anything. They’re an outdated system based on old stereotypes. Every autistic person is different and has different needs. And categorizing someone by functioning labels tells you nothing about a person’s strengths and weakness, the level of assistance they need, and most importantly, who they are.

When you call me high functioning, it’s not a compliment. When you say that you can’t tell that I’m autistic, it’s not a compliment. I don’t like to be told that I’m almost like you. I don’t need you to reinforce the belief that I have to be normal, no matter the cost.

Tell me that you like my hair. Tell me that my jokes make you giggle. Tell me that you enjoy spending time with me.

Ask me who I am, not how I function.

 

 

 

Stocking Traditions

It is Christmas Day, and my wife and I have just finished opening our stockings. We’ve use this method of gift exchanging for most of our relationship, and it’s something that I really cherish.

I’ve always found gifts problematic because it’s a very social activity. There are so many rules around it, and I’ve always had trouble knowing what sort of gift to give, how to figure out what someone might want, and how much to spend.

My family puts a lot of pressure on things like finding the perfect gift and spending enough on someone, which honestly makes the holiday season really stressful. My wife’s family is nothing like this, and it took a while to get used to. Even with their celebration was low-key, I still found it stressful. I’ve gotten more used to it, and I became more excited about celebrating with them, and my wife and I used their model for our own Christmas celebration, which I deeply enjoy.

On Christmas Eve, we exchange pajamas and books, and then in the morning, we eat cinnamon rolls and exchanges stockings.

The way we do stockings is that we agree on a set amount of money we each get to spend, depending on how the budget is looking. This is helpful because I don’t have to guess how much I should spend. One we’ve got an amount, we have the attitude of ‘go and use x dollars to fill my stocking with things you think I’ll love!’. There are items that make it into the stockings every year, like candy and chocolate, fun socks, and themed coffee mugs. The rest is a mystery until Christmas morning, and that’s what makes it fun!

I never thought that I’d be here telling you how much I love Christmas, but I’m so glad my tiny family has traditions that make me so happy!

 

Torn By Caution

I think that I’ve mentioned here and there that I’ve got some medical issues. I’m dealing with two right now.

One is, I’m having a lot of pain and numbness and tingling in my left leg, all the way up to my hip and lower back. After 7 months of pain, 5 different doctors, 4 MRI’s, and 3 injections, we’re at the final option: surgery.

The second problem is chronic, and it’s called POTS. It’s a neurological condition that’s caused by dysfunction of the autonomic nervous system, and I’ve been dealing with it for almost a decade. I’ve done all the tests, I’ve tried all the meds, I’ve suffered through all of the therapies. Except one.

Fluid therapy. My neurologist isn’t really a fan of it, and he has some valid reason, but we’ve run out of things to try and improve my quality of life. This therapy involves getting a liter or two of IV saline a few days a week. Problem is, getting IVs put in that often is hell on your veins, and often results in blowing out a lot of useful veins. So we’ve decided to put in a port, and what does that mean? Surgery

I’ve been out of school for about 6 years, and this spring, I planned to take a class or two at my local community college. I was really excited because if these classes went well, I was going to start the process of getting a Bachelors.

But there’s an issue here, and I bet you’ve noticed it. I need to have two surgeries, and they’re both going to be during the first month of classes. So what do I do? I’m torn. I want to go back to school so badly. I’m ready to move forward with my life and this is the way I’m going to do it. But if I’m couch-bound for a week both times, my work will suffer. If I’m on pain medication and unable to think straight, my work will suffer. If one or both of the surgeries cause a POTS flare, my work will suffer.

So what do I do? Be cautious and realistic by dropping my classes? Or follow my heart and hope that it will work out? I just don’t know.

 

Can You Relate?

I run my hands over something soft

Something bumpy, something smooth

There’s no describing how good it feels

Can you relate to that?

 

I’m in a place that’s much too crowded

Too much noise, too much light

My senses hurt me, overwhelmed

Can you relate to that?

 

Engaging with my favorite things

Special Interests, special joy

Makes me want to jump and flap

Can you relate to that?

 

Talking to people I do not know

Try to smile, try to listen

Being polite is a social requirement

Can you relate to that?

 

Accepting that I’m a bit different

Always have been, always will

I’m starting to love who I am

Can you relate to that?