#AutismPositivity2014

I wanted to participate in the Autism Positivity Flash Blog this year, but of course, I figured out that it was happening when I started to see the earliest posts head up. So it may be a bit short. Or a bit list-like. But I like lists. So that is all good.

I am autistic. Of course, I find it difficult to separate what is awesome about me because of being autistic. And what is awesome about me because of just being me. They aren’t separate things, necessarily. So what follows will be a few things that I think about when I think about autism:

  • When I think about autism, I think about moving. I think about happiness. I get extremely, jumpy, flappy, excited over things like daffodils and GFP. Or the beautiful collie I saw walking the other day. I think about how lovely it is to fully express happiness, to have it bubble up through my whole body. When I am happy, it is obvious. I have never seen any point in hiding happy. When I am happy, I share it with the world.
  • When I think about autism, I think about brains. My brain is autistic and it can do amazing things. I mean, brains are pretty amazing to begin with. They do everything. Right now I am thinking about how the my brain is telling my hands to move to type these words which also means that my brain is responsible for me thinking about me thinking and on and on and on in an incredible loop.
  • When I think about autism, I think about the Amazing Autistic Community I have found and the amazing new friends I have made.
End of Story–but not really… the list goes on and on and on and on and on and will keep going, even if I don’t add on to it here. (But if you want to see more Expressions of PosAutivity, CLICK HERE!)

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Living

I need to be able to live somewhere that I am not afraid of leaving my room. I need to live somewhere that I feel safe in the whole living area. That I can go in the kitchen whenever I want to. I am paying rent for half an apartment, but I’m afraid to use most of it. It’s an irrational fear, and afraid might not be the absolute best word for it, but it is the best word I can find right now.

Often, I won’t leave my room if I know my roommate is in the kitchen/living/dining room. This has negative effects on my eating habits. I can’t schedule my meals because I never know if she will be outside her room that day and I will need to make something quick so that I don’t have to stay in the kitchen long if she is out there. Even though I know this is irrational and there is no reason why I can’t use the kitchen if she is in the living room, it is just something that cannot happen, except on the best of days. Even if it isn’t a physical barrier, it is still something that prevents me from eating. It is still a real barrier for me.

I want to state clearly that this is in no way my roommate’s fault. She is a good roommate. She respects my space and doesn’t come into my room ever unless she has something important to tell me (like the oven is still on, or the timer is going off, or I got mail here it is). She doesn’t eat the food that is specifically mine, and splits the bills on the food we share, like bread and milk. She pays the internet bill on time so that we have internet always, which is important. Admittedly, sometimes she doesn’t do the dishes, but that is something I also do. When I told her that I do better with initiating conversations written, she started asking me over g-chat or facebook chat about things like paying my half of the internet bill.

The things that bother me are things she can’t really help. For instance, she had a really bad cough for months. I recognized that was not something she was doing consciously to annoy me, and it probably was worse for her than it was for me. But that still didn’t stop it from hurting my head every time I heard a cough, from distracting me so that I couldn’t concentrate on anything.

But mainly, it is her presence.

And I feel absolutely, positively horrible for saying this, because she is a nice girl. She’s one of my friends from undergrad and she’s also doing a Ph.D here. And her program doesn’t seem to be full of nearly as many lovely, friendly people as my program and I know she is having a hard time with it. My time at school/work is full of friendly interactions with fun people and hers is not.

But I need to move out.
I need to live somewhere I feel safe.
Somewhere where I am in control of the whole living area.
Somewhere that allows pets so that I can have a cuddly, snuggly friend.

But I feel horrible about abandoning her. Even though I’m not leaving until the lease is up (or at least close to it. I can’t pay two leases on a grad student stipend.) Even though we lease through student housing so she can stay here and still pay the same rent and they will probably put someone new in this apartment so that will be good because she will not be alone and generally gets along well with people. And also just that we won’t live together doesn’t mean that we can’t be friends.

And sometimes I talk to her and it is nice and fun and good. And happy even. And then I think that maybe I could handle this, that maybe I am being selfish and antisocial and lazy and if I just started spending more time not in my room I would feel safe in those parts. That it is just me being a horrible, lazy, selfish person.

But it isn’t selfish to want to be safe. It isn’t selfish to want to be able to make myself food on bad or tired days.

Probably not.

Some Easter Solutions

So for Thanksgiving, I went to Thanksgiving-holiday-celebrations with boyfriend’s family. And while it was fun, it was also overwhelming and completely drained and melted me down for much much longer than it should have been.

But, like I said before, boyfriend is important to me and his family is important to me. And they are physically close which is convenient for holidays (especially ones like Easter where I have to work the next day now that I am not at a Catholic school for the first time in my life). And I like them.

So I was glad when I was invited to Easter. And I was going to be prepared. I would handle the sound and take breaks and manage my overload-meltdown-awareness and everything would work out. And guess what? It actually did! There were mistakes and wrong turns and noises and surprises and I survived and enjoyed it.

Preperation

I was going to bring some sort of dessert, because I like baking and I was thoroughly trained to bring something whenever you visit. After musing over ideas for a while, I decided on carrot cake. But carrot cake was a no-go, when discussed with boyfriend. Apparently a large portion of his family is opposed to it. After some more thought, I remembered this beautiful Christmas dessert I made.

this is a plate of cream puffs covered in chocolate arranged in a tower on a wooden tableIt was not very difficult to make and very impressive looking. And also I really like cream puffs and chocolate and pastry cream, so it seemed like an all around good idea.  Of course, I had forgotten the fact that the old oven in my apartment is not nearly as reliable as the oven at my parents house. Even with the hanging thermometer I put inside so that I can roughly tell when things are finished preheating.

So I ended up with some very burnt cream puffs, from the first batch. (Like extremely burnt. Like they looked like charcoal briquettes. And sort of tasted like them, when I tried one in the vague hope that they had merely decided to darken without altering the flavor, or at least not in a way strong enough that I couldn’t hide it with chocolate. Alas, it was not to be.) And the second batch, which I took out in time, were not very puffy. So I didn’t bother making the cream, because it was only going to be for a few cream puffs, and that would be no good at all. Not enough dessert. Also, these cream puff adventures set the fire alarm off, and the windows in my apartment are very difficult to open (my roommate and I have to open them at the same time, because they either are very difficult to open or we are both very weak. It is probably a combination of both.)

So I went to my room and panicked a bit and was sad for a while. Then I got back to talking to some people (sadly not boyfriend, who was at Easter Vigil) and eventually one of my best friends, who is a baking machine (who makes all these wonderful delicious crazy dessert combinations that make me want to move to Colorado and be her general taste-tester) was kind enough to go through some basic easy things that I know how to make. So I settled on blondies, which are quick and delicious and reliable. 
One problem solved by asking for help.

The actual Easter dinner/family part

There were food and people. The same relatives I had met before/ enjoyed the company of. I actually preferred most of the food to Thanksgiving food. THERE WERE TWO TYPES OF MEAT! Also, boyfriend told me after Thanksgiving that I don’t have to eat everything and if I don’t like something it is ok not to finish it, so I didn’t have to spend any time trying to force myself to eat things that I strongly dislike AKA green beans while forcing my face to be a polite face (I’ve always assumed that I am able to decently maintain one, anyway.)
There were times where the conversations before lunch/dinner got too heated for me. There was an especially passionate discussion about college football players unionizing. I took breaks during those. I would go upstairs from the basement or out into the backyard. I spent a lot of time over this Easter sitting in the backyard or walking in circle around the house barefoot in the lawn. Spinning and flapping my arms. Watching the birds or the neighbor’s cat. It helped that it was deliciously warm outside and empty.
After a while, I would go back in (or I was called in when it was time to eat). I had milk with my dinner instead of wine like the adults, because I would much rather have milk. There were fun conversations with people I know well. After dinner we played board games. I really enjoy board games because they are a structured activity where you can still go outside them for conversations if you want, but they give you a structured starting point.
At several points, though, I was getting tired. Mostly of sitting in folding chairs. We spent a long time sitting around a table in chairs. After the meal, my family usually spreads out fairly quickly across the couches and the floors. I wanted to lie down or sit on the floor and that wasn’t happening. Other than that, things went well. I was tired, but mostly eaten-large-delicious-meal-tired not social-hangover-tired.
Problem solved by sensory and social breaks.

The drive home

So, I had already arranged to have boyfriend pick me up and drive me, even though it is a little out of his way, compared to him just going with his parents. I had reasoned that there was no way I would have been able to drive home safely after Thanksgiving. And certainly not with my roommate also there in the car. And boyfriend had offered to drive, so that was what we did.
Of course, there happened to be traffic. And boyfriend gets stressed by traffic (at least, I think he does). And so then I will pick up on it, or at least the Something Is Wrong part, and then be negatively affected. Especially after a long day, that can sometimes be enough to trigger meltdown. But I had managed myself well during the day, so I was able to deal with it. But then the road that we were going to take when we got off the highway was closed down by the police (because of a shooting). So we had to navigate a new way home. Luckily boyfriend has a smartphone, so we did have renaviagateable directions, but the part we had to navigate through was the not-safe part of the city between where I live and the highway. So it was a bit stressful. 
At the best of times, I am not good at giving directions. I get right and left mixed up a lot. Under pressure it gets much worse. And this wasn’t a particularly safe neighborhood (especially late at night), so we did want to minimize our wrong turns and circling-the-block-to-go-the-other-way type of navigation my family usually employs (which is assisted by our lack of navigational technology, admittedly). So that was a disaster.
BUT EVEN WITH ALL THAT, I WAS OK.
I was upset when we got out of the car, sure. And boyfriend walked me up to my apartment with my alcoholic root beer he bought me earlier in the week and we found a new way for him to get home (and researched why the police had blocked off that area, which was not reassuring at all) since the normal way he gets home was off-limits. But I calmed down enough for him to feel ok leaving, and then after half an hour of messing around on various electronic devices, I had pretty much calmed down completely. 
Problem solved by managing my resources during the rest of the day so I had enough left to deal with some unexpected problems.

The take-home message

I’m excited, guys! I used coping mechanisms today. And they worked so well. They made things so much more incredibly navigate-able and survivable. This is why it helps to know I am autistic. To know I need sensory breaks AND THAT THEY ARE OK. Because it lets me manage things I enjoy doing but that can be difficult.
Easter turned out so much better than Thanksgiving. 
Coping mechanisms can work!

Blogging Belonging

Dear Autistic friends,

You are all wonderful.
Thank you so much for making a place I fit in.
I love the internet.

I’ve usually had some places where I’ve felt like I’ve fit in. I am from a very close extended family, where most of the cousins are within a five or so year age range. And there’s a fair number of us, and we’re pretty strange (#MySemiAutisticFamily is what boyfriend calls it to differentiate from the other very normal apparently side of the family). We all grouped together and played the strange games kids come up with when they have little adult supervision (or think they have, anyway. Our parents were pretty sneaky.) So I’ve always felt like I’ve belonged with these cousins.

But eventually you enter the real world, where you sometimes (or closer to almost-always) have to interact with people that you are not related to. And that is when I started to realize that things were different. And as my cousins have grown up, and dispersed to different jobs and countries and medical schools and places without reliable internet, and developed lives outside of family, it becomes more and more necessary to talk to people you are not related to.

But the great thing about cousins* is that even when you haven’t seen each other in months or years, once you put yourselves together again, it is just the same as the last time you spent a week straight together hiking and going to Trader Joe’s.

And as my life grew less and less structured, and I had to spend more and more time away from family, as I moved into high school and college, as I had more and more responsibilities and more and more interactions and more and more strangers, I got more and more alone. I started to realize that I was different. And that it wasn’t always the good different (I always knew I was better than a lot of people at math for instance). I started to realize that things that were incredibly difficult for me were sometimes things didn’t even realize they had to do.

I got more and more lost.

Even though I made some amazing friends, there was still something missing. My other friends seemed to like each other more, because they were always hanging out (eventually I learned the formula for initiating hanging out, unfortunately just in time for graduation).

And then I figured out (or started to figure out) this whole autism thing. And it’s like finding a whole new branch of cousins. People who understand me, who have the same stories and history. Even though there are so many ways and differences in life and life circumstances. There was still the sense of almost easy familiarity that I have with my cousins.

And it has made my life better. I still have struggles, but I have a place of belonging. I have a place with answers. A whole new place to turn for advice.

So,

Internet people, thank you.
Thank you for being here and being there and being so similar.

Blogs are weird things, where we share secrets with the whole world and make friends with strangers that we have never seen, who know things about us maybe even our closest friends don’t know. I was initially skeptical.

Thank you to E. at The Third Glance, where I first realized I could be autistic because I could see myself in almost everything she wrote. When I first realized that there might be a category for my different, that maybe it was an actual difference, not just a character flaw.Thank you to autisticook for adding me to her list of autistic bloggers. That was AMAZINGLY INCREDIBLE  Because it was belonging and sort of the first confirmation that other people acknowledged me as autistic. That I could join the internet community. Thank your Nattily at Notes on Crazy for all her helpful app knowledge and suggestions and helpful hints to make life better.

And there are so many other people.

So many amazing people.

And fitting in and talking and community and happiness.

Thank you, semi-strangers that I met on the internet.

You are amazing and you have made my life so much better.

Sincerely,
Alana

~~~
* I want to make it clear here that this is probably not actually a generalizeable statement. It is really refering specifically to my cousins, although I do know other people who also have this experience.

Just another reminder that autistic children grow into autistic adults

I’ve been seeing so many posts today about autistic children, so so so so many. And that is just from the brief facebook browsing breaks I have been taking when I am supposed to be designing primers at work. I (mostly) have not been actively seeking it out. And sure, children are adorable, and you can put up really cute pictures of them which you can’t really do for adults, but the story is incomplete. (Not to say that autistic children are not important and wonderful, as well.) Autistic children grow into autistic adults.

sleepwakehope 1 in 88 people. Autistic children grow into autistic adults.  TOM WILLIAMS. I thought their lifespans were significantly shorter. Labrynithia. Autistic people have normal lifespans. You may be thinking of something like Down Syndrome, that is associated with serious health concerns. Autism is (mostly) just associated with neurological differences. Nine to five workday. And even for people with Down syndroe, that has (and is) changing for the better. In 1929, most people with Down syndrome lived to be 9., maybe 10 years old 18 years later it jumped to 12-15 years old. Today, 44% will live to be 60.
This is from the comments on a NPR article Jump In Autism Cases May Not Mean It’s More Prevalent.
Admittedly, I should really know better than to read the comment sections of things like this (AND EVEN
MORE TO I SHOULD KNOW BETTER THAN TO COMMENT WITHOUT TRIPLE CHECKING THE
NUMBER), but actually it wasn’t as bad as it could have been (and people didn’t even fuss about
 the number-typo).

And then I happened onto the NPR comments for this article and decided that maybe I will take an optimistic view that people honestly just don’t know that it is possible for autistic children to grow up (if you count lack of knowledge as the optimistic view). For people who don’t think about autism much, maybe it isn’t too much assumption that people with autism have significantly shorter lifespans. After all, it is compared to cancer and life threatening diseases so frequently. It is painted as a horrible horrible thing that tears families apart and it is full of doom and gloom and ominous signs. Maybe it makes sense then that people don’t realize that autistic children grow into autistic adults.

But they do.
Regularly and frequently.

And I think the world needs another quick reminder that autistic children grow into autistic adults. (And mostly, I want to tell everyone who posted something about autistic children today (well, I suppose they mostly posted about children with autism, technically) that autistic children grow into autistic adults. But I am not brave enough to do that, to publicly link my name with autism yet, with any sort of phrase or words where people who know me vaguely might hear and notice. I am not yet comfortable or confident enough in this new identity to tell people I know.

So I am going to tell the anonymous world of the internet, through a method not attached to my real name.

Autistic children grow into autistic adults.
Autistic children grow into autistic adults.
Autistic children grow into autistic adults.
Autistic children grow into autistic adults.

And here is just a brief smattering of some of the lovely autistic adults (well, blogs by autistic adults) that are out here on the internet. It is largely incomplete. I know there are so so so many more people that I have missed (and if you would like to be added to the list, or feel I have missed someone who should be on the list, just comment or email me and I can add you). (Or if you would like to be taken of the list, I can do that, too.)

(Some) Blogs by Autistic Adults