When I was little, I liked to spin in circles. I would spin in circles until I was too dizzy to stand, and then I would start spinning the other way instead. I could do this for hours, and I loved every minute of it. When I was a little older, I learned that it wasn’t ok to do that anymore. Big girls didn’t spin. We didn’t flap our hands. We didn’t obsessively read everything we could find. We didn’t squeal with joy when we did something we loved. We didn’t run away and hide under the chair when there were people around. We ate what was on the plate in front of us, even if it was so awful that we couldn’t chew and swallow it. We wore clothes that hurt us, and we had to look at people in the eyes, even though it made us completely unable to concentrate on the words they were saying or what we wanted to say. I learned that if I said anything or put up any fight to anything that hurt me, I would be punished. I learned that if I didn’t look at someone properly, I would be punished. I learned that if I talked wrong, said the wrong words, or at the wrong time, or said too much, or said too little, that people would get mad. I learned that no matter what I did, I was going to have done it wrong. When I a little older, I didn’t know that autism existed, but I did know that I wasn’t like the other children. And I knew that whatever made me different, made me wrong. And it was my sworn duty as a member of the human race, to hide any trace of it, so that I didn’t appear wrong. If I messed up, I knew, there were dire consequences.

It wasn’t until college that I found out what made me different had a name. By that time, I knew autism existed. I thought I knew what it was, in a vague sense. I hadn’t ever seen Rainman, but I had heard a bit abut autism, and I knew it was bad. There was a girl who was mainstreamed just for homeroom in my middle school, who everyone said had autism. That was all I knew about it, and I knew it was bad. So when I was first asked if I was autistic, my immediate answer was “no way!” For you see, I had spent the past 19 years of my life working with every ounce of my being, to hide it, with only marginal success. In a way, when I really learned about autism, I started to realize that it made sense as it applied to me. After all, autism was wrong, and so was I, so that was ok.

It took me a long time to realize that being autistic, it wasn’t all about being “wrong” and having a name for it. I thought “ok, now that I have a name, I can fix all the wrongs” – not that I hadn’t tried to fix everything for my entire life already. I started reading perspectives written by autistic people, and seeing how they viewed themselves and the world. I realized that the framework to interface with the world that I was forced to work within growing up just didn’t fit with the way that my brain processed information. It’s like trying to interact with a computer by writing in a programming language that doesn’t have a compiler. You can write all the code you want, but without the proper compiler, it is never going to run, and all you get is gibberish and frustration. Reading other autistic people’s writing helped me to realize that my fabled “fix”, wasn’t what I thought it was. I wasn’t buggy code, it was much different from that. I began building a new framework for interfacing with the world. I learned that I wasn’t wrong, just different, and I needed to learn a new programming language that worked better with my built in compiler. I started to accept that my quirks, my sensory issues, my passions, and my fears, they were just a part of me that needed to be respected and worked with.

In the 5 years that have passed since I learned that my quirks had a name, I have learned to accept myself. And I think, in all honesty, that the reason I am surrounded by such wonderful people, who accept me the way I am, is because I accept myself. If I lead, others will follow. Sure, I spend most of my day in my office not talking to people. I wear the same type of clothes every day. I eat very specific food. I jump at the slightest noises. I flap my hands and tap my feet and wring my fingers when I’m stressed. I curl up into a ball and rock when I need to. I have a great job, doing research that I love. I have wonderful friends who accept me with open arms. And I still love to spin in endless circles. That is me, autistic and happy, and on this journey of life just like everyone else. And that is what autism acceptance is.

Advertisements

This is the first post in my April Autism Acceptance series. In this series, I am going to highlight various people and events from my daily life that epitomize what “autism acceptance” looks like for me.

——

I have had the same watch since I was 13. Before then, I had another watch. I don’t understand time very well, and I can’t keep track of it on my own, so a watch is essential to my functionality. I can’t really do anything in the “real world” if I can’t keep track of time. Sometimes this is fine, but when I have 20 things on my to-do list for the day, it just isn’t. So I use my amazing digital watch, with its timer, and stopwatch, at least 10-15 times per day, often more. Unfortunately, this watch is now 11.5 years old, and its band is failing. I had to replace the band once before, and managed to do so, but unfortunately, the company no longer makes the part. And they can’t recommend a suitable replacement band.

My watch is a constant part of my wardrobe, and for the past 2 weeks, I haven’t been wearing it, most of the time because I can’t destroy the band anymore. I am constantly on edge now, because every time I move my arm, I am reminded of its absence. This usually leads to a flap or a few rocks, or some serious finger stimming/wringing. As you can imagine, it is rather distressing to be missing my watch. I’ve been carrying it around in my pocket just to reassure myself that it is still there, and so that I can use it, but it just isn’t the same. Not having my watch on is more than just a small change. It changes the whole sensory environment on my arm. And it changes how I have to go about structuring and thinking about my day. It really is a major barrier to my functioning.

And that’s where the autism acceptance thing comes in. My friends have noticed that I’m more on edge. One of them even noticed my watch was not on my wrist, and she put two and two together. They have expressed concerns, offered to loan me a watch, and help me get it fixed. Not a one of them has laughed at me and my panicked sounding half-sentences about how I need my watch, and yes, it has to be this one! Every single friend I’ve talked to about this has offered to help me in some way, to make it better. Unfortunately, it isn’t resolved yet, but knowing that I have the acceptance and support of my friends, both in my attempt to fix my watch, but also to help me through the misery and confusion that the band breaking has caused, is really wonderful.

Tomorrow, April 1^st, is the beginning of Autism Awareness Month. How ironic, that it starts on April Fools Day. Or perhaps how fitting, since of course, so much of “autism awareness month” is really just one big practical joke. Or maybe that’s what I wish was the case. Anyway, I digress. Of course, I assume everyone who reads my blog on a regular basis, is very much so aware of the fact that April is a month of heightened discussion of autism. Most of us are probably up to our eyeballs in “awareness”, and actually dread the month. Me? I try not to let things get to the point of utter dread. Especially things that are out of my control. I spend so much of my life dreading things that are out of my control already, that I just have learned to pick my battles.

Instead of condemning April, or telling everyone which charity they should be donating to or scorning, I’m going to try to do something a little bit different. My spoon level has been far below even “low” for a while (hence the very few posts), so I can’t make any promises of daily posts or anything, but I am going to try to post much more frequently this April. I’m hoping to write a series of short posts highlighting autism acceptance moments from my daily life, to show what autism awareness, and indeed, acceptance looks like in practice. Because after all, we don’t just want people to be aware that this mysterious “autism” thing exists… we want people to know that we are people, with likes, dislikes, personalities, and interests. We are friends, siblings, parents, children. And even though we live in a world where things are often too loud, too crowded, too busy, and too much, we deserve the respect that every person on the planet deserves. And we want to show people who might not really know what autism *really* looks like, that they, too, can play a part in helping to make our world, and in turn, the whole world, a better place.

So check back soon, my lovely readers, I hope you enjoy my April Autism Acceptance Series.

This post isn’t particularly insightful, but since my goal in writing this blog is to show how my brain works on a daily basis and in response to things, I thought I would share something that I’ve been stuck on for a while.

One of my biggest challenges is going somewhere new. This could be a new restaurant, a new theater, a new parking lot, anything really. It doesn’t matter that I’ve been to hundreds of restaurants before. If it is a chain, it doesn’t matter if I’ve been to others in the chain. I will still be supremely nervous about going to and entering a new place. This stems from my poor social skills, and the fact that I have to learn the “acceptable” patterns and interactions. Lets continue with the restaurant theme. First off, some restaurants have multiple doors. Which one do I use? Once I’ve figured out how to get into the building, is it a “seat yourself” or is there a person waiting to seat you? Does this change depending on what time of day it is? Sometimes there are signs or a person standing there to help answer that question, but other times it is ambiguous. Once I’ve been seated, and have a menu – is there food I can eat? If not, how can I modify an existing menu item? And past that, how can I communicate this to the people who will bring me food? And finally, at the end of the meal, do I pay the waiter/waitress, or do I have to take my check up to the counter or register? I have worked very hard to be able to generalize my model of “eat a meal at a restaurant”, but it isn’t easy, and I mess up quite often.

As you can see, there are numerous challenges associated with going to a new place. I’ve been to a restaurant/bar several times now (for various friends goodbye parties), and I’ve never figured out how to order a drink at the bar besides water, which is free. I can’t figure out how it works. I don’t drink, but I really like virgin strawberry daiquiris – it’s basically a strawberry smoothie after all, and I’d love to figure out how to order one. But I digress.

I solve this problem in several ways. When I’m nervous about going to a new place, I try to go with a friend. This way, I can follow their lead. If I’m with someone else, and we mess up the social stuff, that friend usually is able to smooth things over, where I would just melt down on my own. But usually the friend is able to adapt to the new environment very quickly, and I’m a good mimic – I can just follow their lead. I try to challenge myself by occasionally visiting new places on my own, but I find the stress of it is too much most of the time, and I’d rather just stay home. The other way I solve this, is if I know I will be going alone on the day of (for example, many doctors appointments), I do a “practice run” – I’ll drive to the place, find the right doors, etc. a few days before, then I’ll practice the steps in my head until the official run. This isn’t always practical, but it is a way to work around this issue.

This brings me to my newest dilemma… I’ve been wanting to get back into swimming. I did it as a kid during the summers on swim team, and while I was tiny and skinny and would literally turn blue during our dawn practices, I really enjoyed what I was able to do. I’ve been wanting to do some more serious exercise that I can control on my own, and I thought swimming would be a great way to do that. This should be easy. My university has an indoor heated pool that I can use. But the thing is, I don’t know any of the steps to “swimming”, beyond getting in a (hopefully empty) lane and swimming back and forth. And sharing when there are too many people. So things like how to use the locker room. How to get into the locker room is step 1. I think this is easy, I just show my ID. I’ve watched people do this, but some of them don’t, and some do, but only sometimes. Once I’m in the locker room, I assume I can use a locker if I bring my own lock. I’ve read my university’s policy, and it seems that if I use my own lock, I can keep stuff there while I’m swimming, but not overnight. When I walk to the pool, I keep myself wrapped in my towel, right? Or do I put clothes on over my suit?  But then, when I’m done swimming, can I shower? I assume yes. I hope so. Do I wear shower shoes? Again, I assume yes. What do I do with wet bathing suit and towel? I assume I put them in a plastic bag then as soon as I get somewhere that I can, I hang them up to dry so they’re not sitting in a gross bag all day.

I’ve been thinking about swimming early in the mornings for months now. I just need to actually do it. I know that if I had a friend go with me once, I would be able to do it on my own later. But right now there are so many obstacles in my way that I’m too nervous to actually do it. Hopefully I’ll be able to get myself into the locker room at some point and from there, I think I’ll be able to figure things out.

A lot of people assume that autistic people and others with social phobias just don’t want to do new things or interact with other people. While that is true some of the time, quite a lot of the time, it is just the opposite – I want to do something new, I just can’t figure out the steps to do it on my own. It is too daunting to try a brand new social situation completely cold, so I just don’t. I’ve been challenging myself on this whole swimming thing. Maybe now that I’ve written this post, I’ll just do it. It’ll have to wait a few weeks though – I want to do it in the early mornings (the pool is open to lap swimmers 7-8am) since I figure it’ll be less crowded, but right now, my mornings are dictated by labwork, since I’m sharing equipment, and the only time I can use it is before 9:30am. Makes for very early mornings, and I’m not giving up my precious scope time for a major social nightmare.

How do other people handle these sorts of situations?

A break from my regularly scheduled posts to tell you about a new adventure I’m embarking upon…

Most of my regular readers will remember a post I wrote a couple months ago discussing one of my hobbies. I’m a knitter. I knit because I love the repetitive feeling of each stitch. It’s calming, comforting, and it makes really gorgeous products. For me, knitting really is a stim. See, world, autistic stimming is awesome 🙂

A number of people asked me after that post if I ever sell my knitted products. I generally haven’t, they just sort of pile up in my closet until I figure out what to do with them. So I thought about it a bit, and I decided that it might be fun to sell some stuff – after all, if I sell some knitted stuff, I can afford to buy more yarn and make more things! And that is always fun.

So on that note, I have created an Etsy store. It is (fittingly) called “StimmyKnitting”. You can access it through this link or from the side bar.

I’ve got a few things up right now, mostly fingerless gloves and a few hats. I also tried my hand at an infinity scarf that a friend asked me to make for another friend of hers, and it turned out so well, I made another! It’s super gorgeous and soft yarn. If I wore scarves, I would totally want one for me.

At any rate, I just wanted to let you all know that this exists… If you see something you like, but it’s not in the right color or size, let me know – I’m happy to take commissions, and at least sometimes, I like trying to develop new patterns, too. As you can see, I’m rather fond of blues and greens.

Some things I currently have up in my etsy store include: (images link to the store)

Hats:

Turquoise Hats

Blue and white pom pom hat

Fingerless Gloves:

Green fingerless gloves

Blue fingerless gloves

A gorgeous turquoise Infinity Scarf that a friend commissioned from me, but that I got super excited about and made another one… it matches the turquoise hats above 🙂

Turquoise Infinity Scarf

I also have a facebook page you can like if you want to see new items as they go up in the shop.

I don’t plan on doing any more major advertising on the blog, but I did want to let you all know that I am trying this. We’ll see how it goes!

p.s. I ship at cost, estimated by USPS cheap parcel post – unfortunately, for those of you who live outside the US, it is expensive to ship things overseas. I’m sorry 😦

I always thought this was kind of a funny story… I grew up in a small town where everything and then some was all about kids soccer. When I was in kindergarten, my mom decided that I, too, would benefit from playing soccer. Maybe it had something to do with her idea that if I just spent more time with the other kids, they’d actually talk to me. Or maybe it was that she thought I would talk to them. I don’t know. Either way, I showed up at my very first soccer class in the gym. I remember there being about 40 kids there, but I’m sure the number was more like 15-20. It was loud and overwhelming. The instructors gave each kid a ball. The balls were nearly as big as my legs. I was pretty tiny, despite being a little bit older than most of the other kids. Then they taught us some skills – how to dribble the ball between our feet. How to stop the ball. How to kick it with the INSIDE of your foot, not the toes. Then they taught us how to pass the ball to one another. After I’d adjusted to the cacophony, I actually had a really great time. I decided that I loved soccer. The next week came along, and we only spent a few minutes reviewing how to dribble, stop, and pass. Then they took everyone’s balls away and made us all chase after one. And I suddenly ceased to see the point. Thus ended my career with soccer.

I never understood the point of team sports – I was never any good at them in gym class or outside of it. I didn’t understand the rules, they moved too fast for me, and for crying out loud, my success was defined almost entirely on what other random kids who were assigned to the same team I was assigned to did during the game. That doesn’t mean that my athletic abilities were extremely poor. Yes, I have serious proprioception issues. Yes, I’m extremely clumsy. But that doesn’t mean I couldn’t learn and excel at a physical activity or sport, it just had to be the right one for me. In addition to numerous team sports introduced in the dreaded gym class, I tried dance (too many kids, too loud music, I’m not graceful, never will be), and ice skating (too cold, I turned blue even with tons of layers, plus the whole sharp blades on my feet was kind of a recipe for disaster), and gymnastics.

Gymnastics was the thing that fit. I actually got pretty good too – I even won states on my best event one year. I’m not saying gymnastics is the solution for every autistic kid who wants to do a sport. I’m saying it was what worked for me. I enjoyed every aspect of it. I was part of a smaller team (there were never more than 8 of us, and we grew up together), and the pressure to improve and get better was entirely on me. I was 100% accountable for all outcomes related to me. It didn’t matter what my teammates did or didn’t do. It was my job to do my best. And it was their job to do their best. We were constantly pushing each other and cheering each other on, because one person’s success was never another person’s failure, it was that person’s success. Gymnastics taught me more than just how to be on a supportive team. I learned how to work with my body in ways I never thought possible. While I’m extremely clumsy walking and doing daily tasks, if I’m doing a gymnastics routine, my concentration is 100% on the moves, and I’m actually very good. I’ve never seriously injured myself doing my routines. Sprained ankles walking off the mats? Definitely. Broken toes walking into the wires that hold up the bars? Yup, been there too. Whack my head on the low bar hard enough to leave a lump? Yep, done that too. But give me a routine to do, and I can learn it and perform it. It takes me a lot longer than many other people to learn the moves, but that’s ok too. I learned them, at my own pace. For me, gymnastics helped me to become more familiar with my body’s strengths and limitations. I was able to learn problem-solving and developed relationships with wonderful teammates. I learned how to participate in competitions and how to win and lose. And I learned some really cool skills that I can still do, at age 24 – I still use the “yeah, I can do a back flip” with a fair amount of regularity – besides, its fun!

Anyway, the point of this ramble is that every kid is different. But don’t discount their ability to participate in a sport or activity just because of their labels. I have found that the important thing isn’t necessarily physical aptitude. It is drive and desire. If you want to do something, you’ll find a way. It might take a long time. It might be exhausting. It might take a huge amount of effort. The path you take to get there might be different from most people. But you’ll find a way to make it work for you. For me, gymnastics was the thing that helped me get there.

And still to this day, I can’t for the life of me, figure out how to play soccer. (or basketball or volleyball or field hockey or football or…….) And that is 100% ok with me. 🙂

Warning: This post contains spoilers for the Disney movie Frozen, which I watched this past week with some of my friends. If you don’t want spoilers, please don’t read below. TL/DR summary: Great movie, go see it! [also, the paragraph below, while containing no plot points, does have a short discussion of an event in the film, so if you want to be totally surprised stop here, if you want a little non-spoiler commentary, read the paragraph below, then stop… :)]

Honestly I wasn’t sure what to expect going into the film – I’d heard mixed things, a review by someone who hadn’t seen it, but who hated it because it destroyed the Ice Queen story, and some people who had seen it and loved it. But I love Idina Menzel, and I’m always game for a fun movie (though not usually in the theater). So my friends and I went to a morning showing (fewer people, less crazy, etc.), and I absolutely adored it. I am sooooo going to see it again. In addition to being a really fun film, there are a couple of really awesome things that Disney doesn’t often do – it puts the self-worth of the female protagonist(s) on their own terms, rather than those of the male supporting characters. And there is an *amazing* scene where they model consent incredibly well, and that absolutely made me giddy, because that is the model of a relationship we want young people to see. (The line went something like: “I could kiss you right now!… I really want to kiss you… may I kiss you?” and then he *waited* for her response!) But the thing that stuck with me was something I wasn’t expecting… there’s a couple of really interesting parallels to autism and how we treat autistic kids/people (and disabled kids/people in general), and I really related much more closely with Elsa (the sister/ice queen) than I did with Anna, the protagonist/official Disney Princess for the film. That’s what I’ll be discussing below. But all I have to say is that if you haven’t seen the film yet, I think it is really worthwhile. Obviously, it’s not perfect, but I was really pleasantly surprised. And it made me happy. Oh, and I’ve had “Let It Go” on repeat basically continuously since I saw the film… I think a good 1% of the 12 million views it has on Youtube are courtesy of your truly. I’ll get my hands on the actual soundtrack next month when my budget allows…

Do not read below this if you don’t want spoilers. Sorry, I’m not skilled enough to make a “click here to read below the fold” so I just have to trust that you, my lovely readers, are smart enough to stop here if you don’t want spoilers for the film.

——————————-

*******SPOILER ALERT*******
DO NOT READ BELOW HERE IF YOU DON’T WANT DISCUSSION OF THE STORY!

Despite the fact that obviously, Anna (the younger sister) is the main character of the film, and we’re supposed to relate strongly to her, I found myself much more attracted to her older sister, Elsa. From the very beginning, when Anna climbs on top of Elsa in bed begging to play, and I was reminded of how my little sister used to do similar things to me. But more than that, I saw a lot of parallels to how my family (and how lots of people) treated me and my autistic traits when I was growing up.

Elsa’s “power”, the ability to cast ice and snow wherever she is, especially when it comes in contact with her hands, is unique, and it makes her seem special to her sister. But as Elsa grows, her powers grow with her, and become harder to control. Anyone else see a parallel to autistic traits and development/growth of autistic kids?

When Elsa is officially “diagnosed” by the trolls, they tell her father to lock her up and keep her hidden. [edit: as was pointed out in the comments, and as I noticed the second time I saw the film, the trolls don’t tell Elsa’s parents to lock her up, they do, however, warn of scary things and tell them she needs to learn control, as well as remove all mention of magic and conceal all things related to it. It is Elsa’s parents who have such an extreme and unnecessary response.] They are to hide this abnormality, and to keep her sister and the rest of the world away from her. This is ostensibly for Elsa’s own protection. They basically place her in solitary confinement, and instead of teaching her how to wield her powers, they teach her to suppress and hide it. They even hide her whole identity from her sister. And when she is unable to do what they want, unable to appear normal, they lock her up. They bind her hands (where her powers come from) with gloves – quiet hands – and they force her to conform or be locked away. This is what happens to autistic kids. We are forced to conform. We are forced to suppress our autistic traits, to hide them from everyone. And when we fail, as we often do, because autism is an integral part of who we are, we are hidden from view instead. There isn’t any help for us to learn how to work with what we are given. We don’t have the opportunity to learn and grow with our powers, we are told to suppress them or there will be dire consequences.

When she is being crowned, and has to remove her gloves, you see her muster every tiny ounce of self-control she has, so that her hands will work the way “normal” people do. She is able to do it, but only briefly. Because that’s not how her body works, and there are limits to how much anyone can do to “pass” as normal, and she is finding her limits. And when she is pushed past her limit later at the party, she has a meltdown, and her magic spills out uncontrollably. She accidentally hurts someone she loves, terrifies everyone around, and spirals into a complete shutdown, running away from everyone in the process. I’m sure I am not the only one who has had this experience…

And heck, she even has a song that I related to:

The wind is howling like this swirling storm inside
Couldn’t keep it in; Heaven knows I’ve tried

Don’t let them in, don’t let them see
Be the good girl you always have to be
Conceal, don’t feel, don’t let them know
Well now they know

But there is a happy ending, of course. In the end, Elsa learns that her powers aren’t so bad. She learns to control them, to work with what she has. While it isn’t easy, she learns how to be her true self, and when others see that her true self, powers and all. Others see that her powers are just a part of the person who she is, and they love her for all of her, strange power and all. Only when she finally stops hiding herself, does Elsa truly gain acceptance. She isn’t normal, but she is a person, a wonderful person, with some very unique things to bring to the table. And when that happens, everyone is happy.

Now don’t get me wrong. I’m not saying that Elsa is an autistic character. I’m not saying that autism is a superpower like the magic in the animated film (obviously it is totally different!) All I’m saying is that Elsa’s childhood and coming of age experience that is portrayed in the film has a number of parallels to my own life, especially based around my being autistic. And I wanted to recognize that, because it made me really really happy. I almost never relate to movie characters that way, but I did, and it made me smile.

So overall, I have to say well done, Disney, very well done. Of course there were some issues with the film, but nothing is perfect. Sure there were some missed opportunities (yet another white, blonde haired, blue eyed princess). Sure, there were some ridiculous over-sexualization moments that were a little unnecessary (Ice-Queen transformation, anyone?). And sure, they mangled the original story to the point of near unrecognizability, with some pretty weird plot holes, but what Disney movie doesn’t? If we can’t suspend our disbelief and just enjoy a fun, animated, obviously fiction story, then that’s another problem. I think this is going on my list of awesome movies I want to own that make me smile and feel good.

Elsa’s main song, “Let It Go” is here:

Two years ago today, I made a decision that changed my life. I was just finishing up my first term in graduate school, about to spend 2 weeks with my very dysfunctional family, and still coming to terms with the fact that I was actually autisitc, a fact that I had stumbled across obsessively about three years prior. I hadn’t really told many people I was autistic. I’d told a few people form whom the information was relevant, but for the most part, I kept my neurology to myself. I was lonely and just trying to make it in grad school. And I had been reading and more recently leaving eons-long comments on autism blogs. So I decided, in a stroke of randomness, that I would start a blog. Choosing the platform was easy – I didn’t want to accidentally manage to confuse my personal google account with an anonymous blog, and further, I really liked the wordpress ability to follow comments via email without having a wordpress account. Plus, it was easier for me as an anonymous person, to comment on a wordpress blog, since there was no mess of signing in. And so, I made a wordpress account, and set about trying to come up with a good first entry. I’ll tell you something interesting… the first round of this blog was called “Seulement E” – French that  roughly translates to “Just E” or “Only E”. Because that’s how I thought of myself in terms of the blog. I was just “E”, and I was telling my story. I registered the domain, and went about writing my first blog post.

As I sat down and wrote that first blog entry, it was just an introduction. I started out introducing myself… on the surface, this is what you see. And then I started to describe how autism plays into my daily life, and how that changes peoples’ perspectives, often for the worse. But that some people look beyond that and move straight to acceptance and friendship. And then suddenly, the concept of The Third Glance was born, and I knew, just knew, that I had something really neat, something more than “Just E”, but a powerful tool and perspective for helping change the lens autism is viewed through. Before I had even posted anything to my brand new autism blog, I had changed for the better, and The Third Glance blog was born.

I polished that first essay and obsessed. And obsessed. And obsessed some more. Then I sat down and hit “publish” to the blog. That very same day, I went on facebook and I put up a nearly identical copy of the essay and tagged a bunch of the people I went to undergrad with. I decided that I was done trying to hide. I didn’t tell everyone in my life, just a few people, but more than I had ever told previously. And I began to live more openly as autistic. Today, I’m not much more “out” than I was 2 years ago, though more people in my life know about my autism, and my blog. After I wrote The Third Glance, I went to my family’s holiday world, and the Autistic’s Holiday Survival Guide was born as I watched myself with new self-awareness trying to navigate the social minefield of the December Holidays. I wrote one of my all-time favorite pieces, Words, on the airplane ride back home, on a tiny little notebook (one of those 2×4 spiral bound pocket notebooks). And just like that, my little blog had grown. Over the next few months and years, I met some of the most amazing, supportive, wonderful people, and I’ve participated in some incredible things using the power of the internet and the power of the written word.

So today, as my blog celebrates its 2nd birthday, I was going to take you on a little highlights tour of the blog. But honestly, that’s not what I’m here to do. I have a page for that, it’s called “Posts I’m Most Proud of” – it’s not up-to-date, but I’ll get it there eventually. Instead, today, I ask one thing of all of my wonderful readers. Today, take that third glance at people in your lives. Remember that they, too, have difficulties, whether diagnosable or not. They too are human. And spread a little bit of compassion. And encourage others to do the same.

Thank you all for reading, commenting, sharing, and participating in this journey with me. I hope to continue for a long time.

E
The Third Glance

p.s. I am interested to know, for regular readers, what the first post you read of mine was, and why you came back after.

It’s winter in the Northern Hemisphere where I live, and as it gets colder and snowier, I am reminded of an interesting conversation I had many months back with a fellow autism blogger, Bec from Snagglebox* about my response to cold. Obviously, everyone responds to cold differently, but I and another autistic woman I was talking with, both seem to have a similar response.

The thing with autistic people is that often our sensory systems are often out of whack. In my case, I don’t deal with cold very well. In fact, my body temperature is significantly lower than normal (when I’m at the doctors, which is a lot lately, they think their vitals machine is broken, because my temp is too low to register a lot of the time… makes for amusing conversations) and I’m always cold. And when I get even colder than usual, I’ve noticed that the amount of stimming I do increases, as does the magnitude of the stims. Often, if I need to stim, I can tap my fingers or toes, or swing a leg. But when I get cold, I curl up and rock. I wave my arms. I shake my legs, and I constantly wring my hands. In short, my tightly controlled tiny stims get bigger and less controlled. And I have a theory as to why this is so…

I have horrible circulation, especially in my hands and feet, and when I get cold, my stimming increases, and often becomes more involuntary. I think that in some cases, my stims are serving a purpose that is greater than just keeping me calm or expressing my feelings – it’s helping to keep my body physically regulated. It’s helping keep blood-flow moving better, and keeping my core body temperature closer to where it should be. It’s almost like some of my stimming is an adaptation to keep my body functioning and counteract the poor circulation. Evolution for the win!

Obviously, not all my stimming is related to thermoregulation, nor is this the case for all autistic people. It’s just an interesting observation I made. Does anyone else have a similar response to cold?

—————————————–

*[this no longer applies, but I’m keeping it for continuity’s sake. The post has been modified with permission] if you are this person (you know who you are) and would like to be identified and linked to, send me an email. I’d love to link to you, I just didn’t want to overstep and share something that I didn’t have explicit permission to share.

Note: this post started out on facebook. What you see below is a expanded version.

To the person who came across my blog the other day by searching “Autistic female roommate”,

I’m glad you’re doing research on how to live with your roommate. As an autistic woman who lives with a roommate, I have had a number of really difficult interactions and issues, and in particular, my current roommate situation is incredibly dire, and I’m counting down the seconds until I am out of it, so I do have several suggestions that would make life better for everyone involved. In addition to this list, I would also like to refer people to this awesome post by Kassiane at Radical Neurodivergence Speaking called Autistifying My Habitat, which has some really great suggestions on living and creating Autistic-friendly spaces.

If you are living with an autistic roommate, I urge you to please consider the following:

-Your autistic roommate probably needs a lot more quiet time than you. This doesn’t mean that they dislike you, they just need more time to recharge their social batteries.

-Along these lines, it is likely that your roommate spends a lot of their day in some sort of workplace where the social demands suck up all of their energy – when they come home, they are probably running on empty (or in many cases, well past empty). They need quiet and space – they might not be able to come home and immediately engage with you. Again, this doesn’t mean they don’t like you. It’s just that their energy needs are different from yours, and interacting with you immediately upon return may be out of their abilities. Let them rest and recharge, and then see if they’re up to engage with you.

-Your autistic roommate needs some semblance of order and routine. This takes a different form for different people, so try to talk with them and develop compromises for your shared space. For example, in my apartment, I need the kitchen to be clean and I need one of the two sides of the sink clear. Otherwise I don’t eat, and that is really bad. So come up with a mutually agreed-upon chore schedule, post it somewhere visible, and keep to it.

-Remember, if you’re not sleeping in the same room, your roommate’s room is their territory, their space, and off limits to you without express permission (EVERY time you want to enter it… permission granted once is exactly that: granted once, NOT granted for all eternity). Your roommate needs time and space to relax and un-wind. They need to feel comfortable and safe in their living situation. A major part of autism is anxiety, and having my own space is really important for mitigating my anxiety. Please, respect your roommate’s boundaries.

-Your autistic roommate may have some habits that mystify you. Unless they are causing you physical or emotional harm, please don’t try to change them or stop them. Sometimes we need to do things differently to make sure our bodies and brains can function properly. (For me, these include things like curling up on the couch under blankets and not moving for hours. It includes spinning in circles and flapping our hands. Sometimes it includes communicating by writing things down instead of speaking, even if we’re in the same room. This is by no means a complete list. It’s just a few things that I do that are a little different from other people.)

-Sometimes no matter what you do, your roommate is going to get overwhelmed and melt down. This is something that happens. When it does, give them some space. If they are able to communicate their needs during a meltdown (this isn’t very common for a lot of people), then do your best to accommodate them. Sometimes self-injury happens during meltdowns. It completely depends on the person what you should do to help them (if anything). For me, I sometimes bite myself, usually not hard enough to draw blood, but sometimes bruise or leave a mark. Don’t interrupt me or try to stop it. The last thing I need during a meltdown is someone touching me. Usually I’m able to get myself shut in my bedroom before the meltdown starts, so you won’t see it, but still, it’s something to be aware of.

-COMMUNICATION is super important. You and your roommate have different communication styles, and by understanding that and accepting it right off, you’ll stave off a lot of frustration. Your autistic roommate may have trouble speaking with you about important topics or just in general. Discuss other ways to communicate with each other. While you may see a post-it note taped to your door as passive-aggressive, it may be the only way that your roommate can communicate with you, and her trying to be respectful but unable to communicate in any form of spoken words. Discuss ways of open communication that you can both use reliably. Emails are great. You can always send an email and follow up with an in-person discussion if necessary. “Dear X, Today I noticed there is a strange smell coming from the fridge. Would you mind cleaning your shelf soon please? Thanks!” can go a long way – much farther than a verbal “Hey, you need to clean the fridge”, which can put someone on the defensive, and might be forgotten about in a few minutes if the person on the receiving end is distracted. Also, if you use emails, there’s a paper trail, so it can help resolve fights.

-Remember that your autistic roommate may not be able to pick up on the subtle hints you’re giving them that you are less than pleased with something. Just tell them directly if something is bugging you, don’t expect them to read your mind and know how to fix it.

-Please, don’t invite people over without checking in with your roommate first and giving them some warning. This is a big one. Breaks in routine, especially at home, can be upsetting and difficult to deal with. I’m not saying don’t have your friends over to hang out. I’m just saying, please check in with your roommate and let them know your plans. That way they can be prepared for it, rather than coming home exhausted after a long day to discover a party going on in their apartment – I’ve had this happen, and let me tell you, it leads me straight down the spiral to meltdown, which is the last thing anyone wants. And if you do decide to have a party at your apartment, include your roommate in all stages of planning, and please don’t just assume they’ll agree. Parties are incredibly stressful for autistic people, so working together to compromise and come up with acceptable solutions is very important.

-On the same note of having people over, try to include your autistic roommate if you’re doing something with your friend at the apartment. Invite them to join you and your friend in dinner or watching a movie. They may refuse, for any number of reasons (food not safe for them to eat, too much social overload already, don’t like the movie, etc.) but please know that the invitation is really greatly appreciated. Don’t take one day’s refusal as a “never” – any number of variables plays into a decision like that, and they can all change at any point. And the invitation lets your roommate know that you are open to interacting with them.

-Your autistic roommate is a person, with likes, dislikes, and a personality. She is not just autistic. Find things that the two of you have in common and can do together, just the roommates (small groups are often better for autistic people to interact). This can include something like watching a TV show you both enjoy, or doing puzzles or a craft. Don’t force the activity (or social interaction) on your roommate every day, but you’ll find that with time, you will get to know your roommate on a level that is beyond “my roommate is autistic”. Soon you’ll discover that “my roommate loves to bake” and “my roommate got me hooked on this awesome show” are phrases that become more common and the “my roommate is autistic” line will fade away.

This is just stuff that I have come up with in my own experience, so I ask you, my dear readers, do you have any advice for living with an autistic roommate (either yourself, or you living with an autistic person)? What sorts of things have helped you live with a roommate? What things have roommates done that have made you crazy? Please leave your suggestions in the comments.

Living with an autistic person can sometimes be challenging, but with a little respect, trust, and alternative and open lines of communication, you may find that we make very awesome, loyal, and consistent roommates, and might even be the best roommate you ever have.