First off, welcome to all my new blog followers! I’ve never been “freshly pressed” before, so it’s been quite an adventure. I hope this post doesn’t disappoint!

This year, for me, is a year full of extensive and intense research travel. This summer, my research is taking me to a new state, across the country from where I currently reside. This means that I have to move, both me and my cat, across the country. Initially I was going to fly, but after some good advice and a lot of thinking, I decided that I wasn’t living somewhere where the public transportation was good enough for me to easily get food and take the cat to the vet without a car, so instead of flying, my cat and I will be driving over 2500 miles to our new (temporary) home. This is a stressful trip for anyone, but add in a sweet, but nervous cat in poor health, and you have quite a challenge. For those of you who are new, my cat, M, is incredibly sweet – here’s some posts about him.

Luckily for me, I’m autistic, and as a consequence, I have a lot of trouble with transitions and big changes like this. Why luckily, you ask? Because I’ve had 25 years of experience in handling them, and I’ve spent the past 6 years thinking extensively about my neurotype and how to best accommodate myself and survive the “real world”. Thanks to learning about autism, I’ve been able to break things down and find little steps to help make myself more able to deal with big, scary changes. Self-awareness really is an amazing thing, isn’t it? So in addition to preparing myself for this journey, I’ve employed a similar tactic to this for my cat, to work up to the big trip with as little stress as possible. Rather than just packing up and putting M in the car on the day I leave, I’ve spent the past several weeks preparing M to drive cross country. Here’s what we’ve done to practice for the big trip:

1. We’ve hung out in the car together while it isn’t moving, letting him sniff around and explore all the nooks and crannies. He decided his favorite place was the drivers seat – look out, if you see a wildly driven car in Texas this summer, it might be M at the wheel (just kidding).
2. We practiced short drives with him in the carrier, and then longer drives with him allowed to roam free. He actually seems to prefer to be in his carrier most of the time.
3. I have a dog crate that fits his litter box, and it has been set up the same way it will be in the car, in my apartment. We’ve practiced using the litter box in the car both while driving and while stationary. He’s a champ
4. We’ve even driven randomly and ended up in places he’s unfamiliar with.

In addition to practicing driving, I’ve been collecting all of his favorite things – his favorite toys, blankets, food, etc. to have with us, so he doesn’t feel quite so lost. I think M will have more luggage then me when we make this drive! But it seems to be working, and I think we’ll have a successful drive. Positive thoughts are most welcome, though!

I’ve known how to break this down and figure out what he needs because I know what makes me comfortable and uncomfortable. I know that for me, going new places is terrifying, but I know how to break it into small, manageable steps. I know it helps me, and I thought it might help M cope with the drive. So far, it really seems to be working, since he’s gotten much more comfortable in the car and really actually seems to enjoy it now. If it didn’t, I’d try another tactic.

And they say us autistics don’t have any theory of mind…

I’ve been pretty quiet this past year. It’s been a very intense past 18 months, between major health problems, teaching, research, grad school, and general craziness. I’ve gotten through it, in large part, due to having built up a great world of support around me. I’ve been living in a safe environment for the past 11 months (!), and what a huge difference that has made. I have wonderful friends and an amazing roommate, who are all there to help me when I need it, who go out of their way sometimes, to make things accessible and “E-friendly”. I’ve gotten to a place with my research where I know what I need to do to finish my PhD (yay/yikes!). In short, it hasn’t been easy, but I’ve been thriving in ways I never knew were possible, because I’ve managed to shape my environment in a way that minimizes my difficulties and allows me to concentrate on other things. It’s also given me a lot less fodder to write about, and a lot less time to write it in.

Now I’m on a major adventure. I’m currently 8 time-zones away from my life, friends, and support network, in a new country with different cultural norms. I’m here for 2 months. And I’m struggling. It’s not that I don’t want to be here – I really do, and the opportunity I’ve been granted here is incredible. I’m learning a lot, and it’s a great thing for my academic career. Yet I’m struggling mightily, because my support system is nearly half a world away. “Support” can mean many things to people. In my case, I’m not talking about formal, institutional, or government-based support. I’m talking about supports that people I trust help me with. Little things that I and others around me can do that make it possible for me to function. This post, however, does not depend on that definition of support – it applies to any and all supports that are in place to help someone with or without a disability function.

I learn how to do new things and go to new places by watching others. When I’m in a new place, I really need a guide. I need someone to follow, who can take me to the relevant places and events, and who can introduce me to the relevant people. Here, I don’t have someone to show me how to properly use the bus, or how to go to the grocery store, or how and when to interact with my colleagues. I don’t understand how to go to a restaurant, and a shop? Not even a little. It’s not like it is that much different from my home, but I’m not very good at generalizing these things. I’d have these same issues if I moved even 30 miles away from where I currently live. It’s really tough to go somewhere alone for the first time for me. After that first time, it’s easier, but often that first time is near impossible to do by myself. The action potential required to initiate something, to get over the initial anxiety and apprehension, is so incredibly high that I often can’t even try. I am getting better at it, and have been for years (I can now travel to a strange city on my own for 2-3 days, stay in a hostel, and explore, at least a bit – this is a HUGE accomplishment for me), but sometimes it all gets to be too much.

This isn’t to say that I’m not slowly learning and adjusting to being in this new place. It’s just that my learning curve is much steeper right now than it would be if I had someone to help, and the amount of mental effort involved is enormous, and takes away from the other things I need to do, like research.

Anyway, this is all a way of saying that supports are important, and they are different for every single person. For me, a huge help comes when I can have some company while adjusting to someplace new. It’s not that I can’t do it on my own. I sometimes can. It’s that doing it on my own takes significantly more energy and effort than I have to give. With that support, I can learn to navigate a new situation and still be able to communicate and work and do what I need to do. Without it, I might learn how to navigate part of the situation, and after, I end up huddled in a corner, unable to talk or function for hours or days.

While this isn’t the only aspect of being autistic (not even a little bit) or the only thing I have supports or workarounds in place to help with, it is currently something I am struggling with a lot. Because this is taking up so much of my mental effort, my usual ability to handle sensory overload is greatly decreased. My tolerance for sounds, textures, tastes, and smells is much lower than it usually is. I’m stimming a lot more (and not the good kind of stimming, but the “I’m super agitated and panicking, and about to crawl out of my skin or have a complete meltdown” kind of stimming). My ability to carry on a conversation or articulate my thoughts is very low (particularly awkward when trying to converse with my new advisor), and my ability to initiate pretty much anything is almost nonexistent.

It’s all connected. My brain has a finite amount of effort it can expend. When I don’t have the support I need, my available brainpower gets significantly overtaxed trying to compensate. That’s what supports are supposed to help with. They help us live on equal footing. They give us the tools and opportunities to be ourselves. They help us where we need help, but allow us to thrive on our own power. They don’t assume that we can’t. They help us so we can.

To those of you who read this who have acted as my ‘guide’ before, going with me on adventures to new places (even if that new place is a new grocery store or the little store or restaurant down the street, or inviting me over to your house for dinner), please know how much I appreciate you.

Author’s note: I’ve been working on this for months trying to get it right. It’s not quite right yet, but I think it’s time to let it fly free.

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I see it every day. I read it from people I respect and whose opinions I cherish. Well-meaning people who care deeply about people in my communities. I hear it from commercials, mass media, and even simply random strangers. Sometimes it’s directed at me, and sometimes its directed at someone else, either present, or not. It’s a qualification. A statement. A description. Someone is described as “beautiful”. Most of the time, it’s meant as a compliment. A statement of how good that person is. How wonderful they are. Sometimes, it’s a statement about a person’s looks. But much of the time, it’s neither. It’s a qualification. Oh, my beautiful autistic friend. Her beautiful son with down syndrome. His beautiful daughter who has cerebral palsy. As if being beautiful is the only quality that makes this person worth acknowledging.

I read a blog post a while ago, by a mother of twins (a boy and a girl). She told a story about a visit to Santa, something many young kids anticipate quite a lot. The boy was asked what his favorite subject was in school. The girl? Santa told her she was pretty. On the surface, things like this seem harmless. The problem, is that repeated over and over, it teaches people that their brains are not important. It’s what’s on the outside that matters. People who are far more eloquent and educated in this subject than I am have written great articles about how harmful telling little girls that they are “pretty” or “beautiful” can be to them as they grow older (example here). The important thing is being able to take pride in yourself, *inside* and out. Being “beautiful” is not an antidote to being “less”.

This is where I start to see a problem. I am going to talk more specifically about the autism community, because that is what I know best, but I have seen this in nearly every other disability community forum that I have ever looked into. I see “my beautiful autistic friend” written out over and over and over again. All you really need is “my autistic friend” if you’re trying to make a point directly related to autism. All you actually need is “my friend” most of the time. Beauty has nothing to do with it. When autism positivity groups compile pictures of awesome autistic people, or blog posts about the good parts of life, the most common adjective used to describe an autistic person is beautiful. As if we’re objects to be admired from afar and that “beauty” is our only redeeming quality, rather than anything else about us. Even other autistic advocates use it to describe each other. But by using the word in the context of “autistic (but) beautiful”, we are continuing to undermine our own humanity, reducing ourselves to something that only holds value by our looks.

I am not a particularly “beautiful” person by any standard. I am fairly petite, and do not have many of the typical features considered “beautiful” by society. Mostly, this is because I don’t care to conform to that. I choose comfort and practicality. My life is lived by creating and employing coping mechanisms for interacting with the world, and I am 100% OK with that. For me, that is my power and my choice, and I am confident in myself and comfortable with how I look. However, I (and many other disabled adults like me), and not a “beauty”. When someone calls me “beautiful”, it feels like a kick in the stomach, because I know that the word is not there due to physical beauty. It’s there to attempt to compensate for something else. To compensate for my “other-ness”. As if “beauty” makes me more of a whole person. There are a lot of positive, powerful adjectives that I can use to describe myself. Things like “passionate”, “friendly”, “kind”, “curious”, or “intelligent”. I might, on occasion, “write beautiful prose” or “wear a beautiful dress” or even have a “beautiful personality” (hah!). But “beautiful” on its own, is not a word I use to describe myself, because, honestly, I’m not, and it’s not something I want to be. By constantly qualifying statements about disabled people with comments about their “beauty”, we’re putting undue pressure on a population to feel self-worth based how we look. We know we often look different. Why not value us for who we are, instead?

Just as society is finally learning to treat young girls as whole people and not just “beautiful” little objects to be admired, I’d like to challenge members of the disability community (disabled people, friends, family, and colleagues) to do the same. We, disabled people of all ages, are so much more than “beautiful”. We are “clever”, “confident”, “creative”, “funny”, “caring”, and many, many, many other adjectives. Some of us truly are beautiful. Some of us are not. Some of us fall somewhere in between. We are people, and deserve to be treated and spoken about as such, without qualifications. If you have to use an adjective (and please consider whether you even need one in the first place), pick one that highlights what you like best about that person. I’m willing to bet it isn’t their “smashing good looks” that has made them valuable to you.

Language is incredibly powerful. While I appreciate being valued for my qualities, I don’t need to be qualified to be valued as a person. So please, don’t call me “beautiful”.

I read a neat post by SeventhVoice today positing that one characteristic that all autistic women seem to share is this innate feeling of being “different” from everyone around them. I have to say, I related quite a bit to this. As an autistic person (heck, as a person), I’ve never really felt “in sync” with the people around me. I’ve always been just a bit (or a lot) different.

That feeling of difference sometimes gets less, sometimes it increases, but it never really goes away. When I was first discovering that I was autistic, I felt that “different” feeling beginning to lift. I thought that I’d finally found “my people”. I read thousands of blog posts, dozens of books and personal narratives, describing experiences of being autistic, and it was like reading a story from my life. I’d never felt that sort of connection with anyone before, and I was fascinated. I knew that this was where I belonged. But the more that I read, the more I realized how different from most of these people I really was, not in vocation, but in ultimate goals. The more I became part of the autism online community, the more blogs I read, the more people I met, the more different I felt from most of the autistic online community.

I’m a young woman. I’m 25 now, and I started blogging nearly 3 years ago, at 22. During that time, I’ve had the pleasure of interacting with dozens of other young autistic women. They write compellingly, about important topics. But I’m not like them. I’m not an activist. I don’t feel compelled to write posts spewing rhetoric, to preach about politics and right and wrong. I don’t take offense and pounce when someone uses the wrong word around me (though sometimes I will take someone aside after and talk to them). My existence and worth isn’t defined from one crisis to another, trying to find a “them” to go up against. I’m not saying that my “peer group” is doing anything wrong. I simply don’t have that sort of disposition to be a part of them, and therefore, I’m different from them. I don’t feel community with older autistic women either – they’ve lived so much more life than I have, and our experiences don’t match up. I don’t have children (though not all of the older autistic women do either), and I’ve been incredibly lucky in my life to not have ever been sexually abused, homeless, or really unemployed (thus far). My experiences in life just don’t match up with those of other autistic women, and so I feel very different from that too. Plus, I’m just a lot younger, I haven’t really lived life yet.

And it’s not just the autism community online. When I was an undergraduate, I spent a good portion of my time with the LGBT community at my university. At first, we bonded over having “always felt a bit different” from everyone else. But then they found their “same” and I was left on the outside, still different. When I was in high school, I joined science team, to be with the people who also felt a bit different. They found their same, and I was still just different. Even in graduate school, my colleagues have found their “same” and I’m still on the outskirts. I’ve hung out with theater people for much of my life, self-proclaimed “weirdos” – and even there, I’m the weird one among the weird. I think in some ways, I just don’t know how to feel that “same” feeling. I think this is part of my existence, perhaps even attributable to my being autistic all my life. I’ve never found a real community that I didn’t feel that I was still different from. Even communities of people who have always felt different don’t have room for me.

Sometimes I wonder if the problem is me. That I just have no idea how to be a part of the “we”, and that I’ll never fit in. That maybe I go looking for differences because that’s what is comfortable, that is what I know. I know I’m different, so even among people who know they’re different, I’ll always find a way to stick out, to stay separate. In a sense, though, that’s what makes me who I am. I go about living my life, interacting with the world, knowing that I’m different from everyone I interact with. That means we’ll have different opinions, different wants, needs, desires. And that also means that by accepting that I have my own (different) set of needs, I also accept that someone else’s needs are different from mine, and that is ok.

In a lot of ways, I think that autistic people in particular can fall into this “different” trap. We have trouble with change, and we’ve been different all our lives. What happens when we find people who are the same? We different-ize them, because we can’t handle the idea that there are people with whom we have some sameness. In a lot of ways, this is what is wrong with the greater autism community. There’s always an “us” and a “them”. It doesn’t matter really, who the players are. Sometimes it’s men versus women. Sometimes it’s older Autistics versus younger Autistics. Sometimes it’s parents versus autistics. Sometimes it’s autistics against the charities and anyone who happens to support them. We seem to spend an inordinate amount of effort focusing on how we are all different. We look for differences because that’s all we know how to do. And we assume that unless someone is exactly the same as us, that they are 100% evil. I can think of very few people who are genuinely 100% evil. That’s not the point. Really, most people are generally good. They might not have the background or the knowledgebase that I have or that someone else has, in order to make a decision the same way I would. But that doesn’t make them evil. It means that we have less common ground. It means that we might have to work harder, dig a little deeper, to find where we agree.

A big part of the autistic existence is feeling different from those around us. I know I’ll always be just a bit different. In a way, it is very isolating. But in another way, it means that I know myself. I know what I need to be me. In accepting that I am almost always different from those around me, I have also recognized that I often have some “same” as well, even if that “same” is only a very tiny portion. I go about life with the assumption that difference is ok, and that the best thing I can do is to interact with kindness and the best intentions I can, hoping to find that tiny bit of “same”, the common ground, to foster communication and understanding.

And if that makes me different, then I am happy to be.

When I started this blog, the idea was to document how my brain worked, to think about how I thought about, interacted with, and perceived the world. I was working through my discovery of what Autism was and the fact that I was autistic. I wanted to share my newfound understanding with others who might benefit from reading about a different perspective of the world.

I’ve always sort of understood that I thought differently from everyone else. I figured, since I obviously didn’t think like everyone else, that no one else did, exactly, either. To me, this was a logical conclusion. If I was different, then everyone else was too. And if that was the case, then they all had interesting thoughts and stories to tell about how they interacted with the world. This is why I read blogs. I think that everyone has something unique and important to offer the world.

I’m taking a class on teaching right now. The idea is that it’s for graduate students and postdocs who want to go into academia and be good instructors. It’s absolutely horrible. It’s a bunch of graduate students who want to be good teachers, who are voluntarily taking this class for no credit on our own time. The professor has all the right intentions, but he doesn’t really have a clue how to teach. We’re in a “flipped classroom” – this means that instead of doing homework based on class, we have class based on the homework. If you did the homework, class is less than useless, because it covers the first 1/3 of whatever reading you had to do. And the teacher, oh the teacher, his heart is in the right place, but it’s really just not very good. I’m the sort who always goes to class because I feel like I gain something out of it, even if only a tiny little bit. This class, though, I feel like it takes away, and that is incredibly frustrating.

I promise, this all comes back to thinking differently and processing information. A couple of weeks ago, we were discussing Bloom’s Taxonomy (link is to wikipedia). For those of you unfamiliar with teaching pedagogy, it’s basically this idea that learning and teaching occur on different levels. To illustrate how Bloom’s Taxonomy works, the instructor had us all do a basic math quiz, and then discuss with our neighbors what level of Bloom’s Taxonomy each of the problems applied to. Then we had to share our answer with the group. Apparently, there was only one right answer. The instructor couldn’t fathom that some of us didn’t memorize multiplication tables, and that every time we were faced with a math problem, we had to think about it. And not only that, we thought about it in different ways. Thus, our location in the Taxonomy was different than where he thought we should be. To me, this is a great example of a diverse classroom and the need to be flexible in your teaching, to accommodate diverse learning styles. When multiple learning strategies are applied in the classroom, everybody benefits. But instead, the instructor spent 5 minutes discussing how my group (and another group who came to another answer) was wrong. I tried to explain to him how the problem worked for my brain, and he wouldn’t hear it, even when others jumped in and said similar things.

The thing is, though, that this sort of questions about how someone processes information – they have no “right” answer. And that’s the beauty of humanity. Everyone thinks a little bit differently, processes information a little bit differently, and understands concepts a little bit differently. It shouldn’t matter what steps your brain takes to get from point A to point B. In fact, those steps will change and grow and mutate as you continue to process more information, to learn more, and build a framework about a subject. Being a good teacher hinges on understanding this fundamental difference in human cognition, both within an individual and among individuals.

A while back, I wrote a post about how being autistic makes me a good teacher. Going through this class makes me realize that it’s not just the fact that I am autistic and therefore think differently. It’s the fact that I’m a metacognitive autistic who thinks about thinking, and who thinks about all of the implications of how my thoughts differ from other people’s thoughts. I think that this is the way to be a good teacher. And so, I continue to think, read, and write, about how people learn and process information. Maybe I am getting something out of this class after all.

Dear Readers,

It’s been quite a long time since I’ve written a productive blog post. That’s only sort of not for lack of trying. I have one in the works that will hopefully come out soon that I’ve been dwelling on for a long time. It’s not my usual sort of post, either, but I think you’ll like it, assuming I ever get around to writing it well. It has been through nearly 8 drafts at this point, and I’m still not sure I like it enough to share. But life has interfered with my ability to function, and thus, this blog hasn’t been as active as I’d like.

Anyway… I’ve had a really rough year, physically. My body is slowly breaking down and no one can figure out why. I’ve had some extremely terrifying diagnoses thrown at me (and no one really seems to know what is right or not, even now). I’ve been on meds that made me have stroke symptoms. I’ve been on meds that made me want to jump off of a cliff. I’m now on even scarier meds that have warning labels saying “stay out of direct and/or artificial sunlight”. No one knows what is wrong with me, but something definitely is, so they just keep trying random meds. Every time they try, something else goes wrong. It’s very frustrating at best, and downright terrifying at worst. I’m not looking for medical advice. I have a good team of doctors who I trust, I’m just, complicated. I’m really hoping that this round of meds works. We shall see.

In the mean time, my cat has been going through similar medical insanity. He’s been hyperthyroid for nearly 2 years at this point, and we’ve never managed to get a handle on it for more than a month or so at a time. So finally, about a month ago, I gave in and decided to do the radioactive Iodine-131 treatment on him. It was a very stressful decision, since he has several other health issues that may or may not have been related to being hyperthyroid, and if we did the treatment, they could either get better, or they could get way worse. We decided, in the end, to treat him, and after a somewhat rough hospitalization and first week home, he seemed on the mend. I had to go away for a week, and the day I got back, between when my roommate left to pick me up from the airport, and when we got back (about 2 hours), both of his retinas had detached, and he went completely blind. Not a side effect anyone had even imagined, much less expected at all. It was pretty terrifying, for him and for me – he went to sleep and woke up blind. Not that there’s anything wrong with a blind cat, and we have been making good accommodations to help him adjust. However we got him into the vet and on the right meds very quickly, and as of yesterday, both of his retinas are re-attached, and he’s regaining his sight – the vet said you can’t even tell anything happened. And we learned that the treatment worked and his thyroid (at least right now) is doing great. So all in all, a rather stressful few weeks, but I am hopeful that we might actually be on the other side of it. I love my cat and I hate seeing him in pain. He seems to be feeling a whole lot better these days, though, so fingers crossed.

And finally, on the “this is great news” front, I finally have a paper published! And it’s in a very high profile journal. I’m very excited, and working very hard on the next several papers. Yay academics. I don’t know what I would’ve done this year without grad school to keep me going. I’m so glad that it is a part of my life.

That’s pretty much it for now. Hopefully more will come as things become less hectic and scary.

E

Autistic – the word that I first heard applied to me my freshman year of college – it was weighted full of disdain, and I feared it. I feared it, knowing but little of the disorder I’d never really encountered, but had heard some very awful things about.

Autistic – the word that I learned more and more about, as I devoured everything I could read on the subject, which was just so utterly fascinating to me.

Autistic – the word that I learned explained the why of how I interacted with the world. The word that explained nearly everything that made me different from the people I was surrounded by.

Autistic – the word that gave me freedom from my fear and belief that I was just a completely broken person who would never succeed.

Autistic – the word that gave me power over myself and my environment.

Autistic – the word that so utterly perfectly describes me.

So why is it, that I’m so scared to say it aloud?

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One of the things that I’ve mentioned before, is that while I am diagnosed autistic, and being autistic impacts many parts of my life in ways that other people just don’t ever experience, I am not “out” as autistic in my workplaces, lab or classroom. This doesn’t mean that people don’t know there’s something very different about me. They do. But I’m terrified to give the word that explains it all. The stereotypes, the negative views, the preconceived notions, and the horrible assumptions associated with being autistic mean that I am terrified to be open about myself, for fear of all the misconceptions.

As an early-career academic scientist, I don’t want to give anyone any reason at all to discount me. I realize that I’m in a really lucky position, where I don’t have to say my label in order to function (well sort of) in society. The stereotypes and negative regard that come with the word “autistic” are just too scary to contemplate, and I’m lucky that I can, for the most part, get away with not saying it. I can’t risk throwing away my entire career, and I’m privileged enough to be (right now, anyway), in a position where my oddities, quirks, and very autistic self is welcome and accommodated. I’ve built a little niche where I can thrive.

The thing is, the people around me know they’re accommodating me. They know I have difficulties, and that I sometimes have weird challenges they don’t even begin to understand. They know I have to ask for help at strange times, and that I interact with the world differently from them. I’m actually very open about these things, because it is so very obvious to the casual observer. I take control over my situation by being very open and explicit about my difficulties with sound, with talking, with textures and other sensory things. I discuss my difficulties understanding certain kinds of language and I speak openly about sensory processing problems. To deny them would be outright lying, so instead I speak up, I own my quirks, and I talk about them openly. There’s just one thing I don’t disclose. I don’t tell them I’m autistic.

I’m afraid that if I say the word, that I will be labeled forever. That I won’t ever get a job, much less a good one. That even if I do land a job, that I will be constantly doubted, that I won’t get tenure, or that I’ll be forced into positions I shouldn’t be in, all because there’s one little word that people have heard. Please don’t try to change my mind about this. I know there are many wonderful reasons to disclose your diagnosis, but the thing is that most of those reasons would be to the benefit of other people, but right now, it won’t help me. If I tell people I’m autistic, it might help change their views on what autism looks like, what autistic people are capable of. I’m not saying this is not a good thing, it’s just not something I’m comfortable doing.

Several people who know about autism have put 2+2 together. They know I’m autistic. They’re the safe ones – the ones who realize that being autistic isn’t what the stereotypes say. When they hear “I’m autistic”, they hear “I have trouble with a certain set of things, such as verbal and nonverbal communication, sensory processing, etc”. It’s the others I have to worry about, the ones who know about the Hollywood, Autism $peaks, tragedy version of autism. The ones who hear “I’m incapable of doing anything functional, ever” (even though I’ve accomplished a lot to be very proud of that they know about, by any metric). My world is full of the dangerous ones. And right now, I can’t safely open myself up to that kind of scrutiny from the dangerous ones – they hold the power, and I don’t want to be another casualty. Instead, I’m quietly changing the way people perceive me and how I interact with the world, without the word that carries so much force, both positive and negative in my world. And I wanted to share some of the explicit ways that I do so.

This post was prompted by a blog post by a fellow autistic PhD student* who is also in science, who has been struggling lately. This person has been trying to make some very big important decisions, and some of their autistic traits have been making it difficult to communicate with relevant people and work on making those decisions. Like me, they are not openly autistic, and, like me, don’t necessarily want to be, but are struggling with how to deal with their challenges and whether to disclose. I’ve found some wonderful work-around to get the help and understanding I need, and I wanted to share some of them. What follows is an expanded and edited version of the comment I left on their blog.

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While I’m often not immediately labeled as “oh, she’s autistic” by casual viewers, most people can tell there’s something very different about how I interact with the world than what they are used to. When those things become a barrier or a problem, I just want to wail “I’m autistic, that’s why!” But the thing is, that isn’t helpful. Most people don’t know what “I’m autistic” means in practical terms. They might know a stereotype, but how that applies to the situation at hand, is almost always useless. What I’ve found is that I can disclose specific things I have difficulty with, without giving it a name. For me, personally, and in my own processing of myself, the word “autism” sums it all up. But when I need to ask for help, when I’m struggling, even if it’s obvious (to me) that it’s struggling because I’m autistic, I give a specific example instead.

I say something like “I have trouble verbally communicating (talking) when I’m nervous. Would it be possible to have a brief email conversation first?” – sometimes they agree, sometimes they don’t. But it is a pretty reasonable request, and gives me some time to show that I can communicate effectively and intelligently before an in person meeting.

Or if it’s something to do with dress code, I’ll say “I have very sensitive skin and need to wear a particular type of clothing or I get very antsy and have a lot of trouble focusing because it feels awful on my skin. Can we work around that?”

When I’m stimmy or agitated or just fiddling with things or rocking, I just do it. If it is commented on, I just say “I like to play with xx, it helps me keep my focus”. Plenty of people have fidget toys. When I get excited and squeal and flap, and people tease me, I say “well I’m just excited”.

If I’m having trouble communicating in a group setting, because it’s busy and full of lots of people and everyone’s talking at once, I’ll say “Sorry, sometimes it’s hard for me to filter out background noise from the voices – your brains do that automatically, but mine doesn’t, and sometimes when I’m tired or overwhelmed, it becomes hard for me to talk or listen. Could we chat in a corner?” (Usually, in those settings that I can’t avoid, I place myself in a corner near the door – corner so my back is protected and I can visually see the whole room, and near a door so I can escape if need be)

Sometimes in the above situation (for example when I’m teaching lab and have 5 students talking at me at once), I just say “Just a second, I can only listen to one at a time, (s)he was first, I’ll get to you guys in a minute”. One of my former students told me recently that all of the class was kind of shocked by that, but they were like “oh, ok, with E, you just wait your turn, and she’ll get to you” – plus, I like to think I was teaching them common courtesy to not talk to a person who is actively engaged in conversation with someone else.

When people comment on my clothing (I’m nearly always wearing jeans and a fleece and socks, even in extremely hot climates), I say either “I get cold easily” or “I have sensitive skin”, or if I’m really feeling up for it, I’ll say something like “I have issues with sensory processing, and I wear particular clothes (long pants/shirt) because air moving on my skin makes me feel sick”. All of these are true.

When I get freaked out by an awful noise, I wait until I’ve calmed down, then if anyone asks, I just say “sometimes loud/ high-pitched/ sudden noises startle me, and it takes me a bit to relax after.”

When someone asks if they can call me, I propose email or text or skype (at least I can see them, and for some reason that makes it a bit better). I can’t get out of all phone calls, but it really helps – and as an added bonus, there’s a written record of the conversation, which is really useful.

When I just don’t understand something, or I’m having trouble processing or communicating, and I need to ask for help, I say so. The words “I’m sorry, I don’t understand what you’re saying, would you mind slowing down or repeating it?” are hard the first few times, but they get easier. The words “Please let me think about that for a moment” are also perfectly acceptable.

When I’m about to have a complete shutdown or meltdown, I have a safe place to hide (my office) and a person (my roommate, works in a building near mine) I can alert to the situation if it gets bad and I need actual support. But usually I just run off.

And (on the rare occasion) when people ask about one of my quirks, I explain.

All of these are viewed as perfectly valid reasons to ask for help or accommodations, or to explain differences. You don’t have to say “I’m autistic” – often it isn’t very productive, since most people who aren’t acquainted with your specific set of issues won’t understand what you need them to do, and, as I discussed above, it can actually harm you in the long run. Instead, just disclose the little difficulty that happens and let them build up over time. Those who know something reasonable about autism will guess, and some may ask you explicitly. Those who don’t, will just think you’re somewhat quirky. But they’ll still be able to interact better with you, assuming they want to. This keeps the “ohhhhhhhhhh she’s autistic and therefore shouldn’t even be able to do grad school” thoughts far away, and replaces it with “well, that’s a little strange, but ok, she knows how to deal with it for herself, so lets move on” – something so much more productive.

I’ve found, generally, that everyone has trouble with different things. Some of us have more trouble with things that others find trivial, and that leads to pathologizing and diagnoses. But everyone has things they aren’t good at. Acknowledging that you have a particular weakness (or several, though I rarely do the barrage all at once – it usually isn’t necessary), is totally fine, and can even help elevate you in the eyes of potential supervisors. Acknowledging it and having a work-around or some other alternative solution, is even better.

Of course, there’ll always be people who respond to things like this negatively, but I’ve found that the vast majority of people respond pretty positively when I disclose a difficulty. Sometimes I don’t have an immediate solution for it, but often I am able to come up with something (especially with a little thought). And it seems to have done me pretty well. Who knows, maybe one day I’ll feel safe using the Autistic label in my workplace. But even so, I’ll still have to explain what my specific needs are in context. For now, I just explain my immediate needs, in small, “safe-to-disclose” chunks, without the label of Autism or Autistic attached.

I know I’m autistic. And I know what that means for me and how to communicate it to people when I need to. And right now, that’s enough.

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*If you would like me to link to your post, you know who you are, please let me know and I will edit accordingly. 🙂 EDIT: Post was edited to include a link to Sleep Wake Hope Then’s post “telling autistic“

Hello, my dear readers, it has been a while, hasn’t it? I promise, this post has very little insightful about autism or my brain or anything. I just have been completely absent from the internet for a while, and am surfacing briefly to say hello, let you know that I’m still kicking, and say thanks for sticking with me. Hopefully more substantial things will be coming later. I’ll probably be writing a bit about my experiences of the past months, and what it’s like to be (not openly) autistic while trying to navigate the US medical system. I just haven’t found the words for that yet, especially since its still very much ongoing.

For those of you who want more details, let me just say that I’ve been sick. Very sick. In and out of the emergency room and hospital. No one can figure out whats wrong with me. No one seems to want to talk to each other. I’ve been doing my absolute best to stay afloat and stay in grad school – that’s the source of my happiness, income, and health insurance, and while some kindhearted people have suggested I take a leave of absence, it is more likely to hurt than help. I love what I do, and it’s the one thing that gives me some purpose. My advisor has been extremely supportive and managing his expectations for what I’m able to do, and stopping grad school would leave me completely focused on “health”, which, at the moment, is rather depressing. It’s kind of my outlet in a way.

I’ve been trying to manage a very interesting team of doctors, who won’t speak to each other at all except through abbreviated “visit notes” that go on my chart. No one has any answers, and they continually blame the problems on “well, it’s probably Doctor A’s specialty” to “well, I don’t know, it must be this doctor B’s territory”. It is ridiculous. One of my meds backfired and it took us nearly 2 months to figure out what was causing the problem. I’m *finally* starting to come out the other end, and maybe some of this will let up a bit. But as you might imagine, while I’ve been juggling all of this, writing, or really, doing *anything* beyond the research and work I’m currently paid to do, was out of the question. This is my first functional day in over 2 weeks. I should be working, but here I am instead. That’s one of the reasons this is short and purely information, not analysis.

On a much happier note, about 2 months ago, I finally got out of my hell of a living situation, and am now living with an extremely wonderful person who I absolutely adore, who looks out for me, and genuinely cares about me as a person. Just that, alone, has done wonders for my mental, if not physical, health. And it’s really helped out when I have physical health flares, because I know there’s someone around if I need help. You might hear some from my new roommate on the blog at some point, too.

And with that, I’m off to do some science-related things. Best to everyone – I’ve still been reading, and hopefully I’ll be back to contributing soon too.

E

I learned yesterday that one of my colleagues (fellow grad students), judges whether people are worth his time, based on whether or not they like me. I am the only TA for one of the undergrad required courses, so I have worked with nearly every undergraduate in the major at my school, and a number of the grad students, so a lot of people know me, at least in passing. This person noticed that people who didn’t like me, he didn’t get along with, and people who liked me, he also liked. So now he uses me as a barometer of whether people are worth his while to get to know. “Do you know E?” “Oh yeah, I don’t like her.” “Thanks for your time, I’m leaving now.”

I’m not sure how I feel about this. Kind of amused, I think, because, well, I do think that whether someone likes me or not on “first glance” is kind of a pretty good judge of character. I think I’m a pretty benign sort of person. I’m pleasant. I go out of my way to be helpful and nice to people, but I’m also no-nonsense, especially when I’m teaching. And of course, I’m the first to admit, I’m a little bit peculiar. I move and dress and talk a little bit differently than most people. While I’m not openly autistic, it is pretty obvious that there is something a bit different about me. This means that most people who meet me once don’t quite know what to make of me. It’s those who take the time to get to know me before judging me that recognize my personhood and my kindness. Those who judge immediately and never think past it are the ones who dislike me.

So to me, it is very interesting that my colleague has determined this pattern. I suppose it makes sense, and I think, in a strange sense, I’m flattered, because this colleague is a really thoughtful, mature person, and I respect his opinion quite a bit. And thinking about it, well, obviously I’m a biased judge, because I don’t like it when people dislike me without getting to know me first, so I tend to judge those people a little bit more harshly, it is kind of nice to know that other people recognize that I am a good person, and that those who don’t like me probably aren’t worth their while either. It is somewhat validating, to be quite honest.

Has anyone else experienced this sort of thing?

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Also a note to my regular readers – this month started off strong, but unfortunately, between health issues and life issues (I’m moved!!!!!!!!! into a safe house, with a roommate who is utterly amazing, and let me tell you it is awesome), I haven’t been up to continuing the autism acceptance in action posts. Hopefully I’ll pull something together for the flash blog on April 30^th. Hope everyone is surviving April better than I have. (It is getting so much better already, though.) I’ll probably write something about my awesome new roommate at some point, just not entirely sure when.

This is the third post in the April Autism Acceptance Series.

One of the things I see most often when I poke around in autism parent forums, is the concern that their child isn’t playing with “age appropriate” toys or doesn’t have “age appropriate” interests. This, to my eyes, is one of the most ridiculous questions to be asking, and in a way, really shows how far we have to go for autism acceptance. The whole idea of “age appropriate” kind of bothers me, because numerical age is such a misnomer anyway, since everyone develops on a different trajectory. But I digress. The thing is, what is the point of toys? When you’re a little kid, there are two major purposes that a toy serves. The first is play. The second is learning and development of some sort. But really, what is the point of a toy? It is to make a person happy and enjoy themselves. Sometimes toys are for comfort. Sometimes they are for a challenge.

In a world where every movement, every interaction, every sound, light, and texture is a challenge, I seek comfort where I can. I didn’t have hours of therapy when I was younger, but I can imagine that for children who do, the hours of therapy only increase the challenges they face on a daily, even hourly basis. Is it any wonder that when given the opportunity to do something of their own choice, they choose something that they find comforting? There’s only so much that my brain can stretch for a day. For some people, that comfort comes in watching train videos on youtube. For others, it involves hours of scripting Dora the Explorer. For others, it is lining up toys instead of doing the “intended” thing with them. Play and toys are more than a learning and developmental tool. There’s more than one “right” way to do something with toys. I would hesitate to say there are any “right” ways to play with something. Toys, interests, and recreation are a chance for a person to allow their brain to reorder, stretch, and grow, but also just to relax and have fun. And the “age” that they are appropriate for is any age that finds them helpful, interesting, or comforting.

I will tell you, that as a 24-year-old woman, I still have all of my stuffed animals, and I snuggle with them on my bed every night. I take one with me many days of the week, especially when I’m not feeling good. I love watching Disney movies. I read and greatly enjoy books written for young teenagers (though by no means are these the only books I read). I don’t find things my age-peers do for fun (going to bars, watching drama-based TV/movies) particularly interesting or compelling. And in my eyes, that is perfectly fine. It is what makes me, me. I choose to challenge myself intellectually, all day at work. But I also choose comfort. When I come home, I choose to read things I have read tens or hundreds of times before. I choose to cuddle my stuffed animals. I choose to watch movies and TV with simple but elegant plotlines that I have watched numerous times before. I am 24, and I am autistic, and my choices reflect what I need to do to interact with the world.

So Parents, next time that you worry that your child isn’t playing with “age appropriate” toys or doesn’t have “age appropriate” interests, just remember this. The age on the package means nothing. Toys and interests have many purposes, and your child is enjoying themselves doing what they love to do. Acceptance isn’t settling for the idea that your child likes strange things that are different from their peers interests. Acceptance is recognizing that there is intrinsic value in someone’s interests, no matter how different from the perceived “normal”, and reveling in that knowledge and understanding.