Posted by: E (The Third Glance) | August 30, 2014

A note to my readers

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

Posted by: E (The Third Glance) | July 26, 2014

Undercover Autistic: on disclosing autism in the (academic) workplace

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?

—————–

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.

————–

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.

————-

*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

Posted by: E (The Third Glance) | June 14, 2014

A brief update – why you haven’t heard from me in a while

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

Posted by: E (The Third Glance) | April 26, 2014

The Social Barometer

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?

———–

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 30th. 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.

Posted by: E (The Third Glance) | April 3, 2014

April Autism Acceptance series #3: “Age Appropriate” play and toys

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.

Posted by: E (The Third Glance) | April 2, 2014

April Autism Acceptance Series #2: My Own Autism Acceptance

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.

Posted by: E (The Third Glance) | April 1, 2014

April Autism Acceptance Series, April 1: The Watch

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 1st, 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.

Posted by: E (The Third Glance) | February 28, 2014

A Social Skills Dilemma… going to new places

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?

Posted by: E (The Third Glance) | February 3, 2014

Introducing… StimmyKnitting!

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 :(

Older Posts »

Categories

Follow

Get every new post delivered to your Inbox.

Join 2,220 other followers