noise cancelling headphones = amazing

I feel a bit behind on the trend here, but I finally got a pair of noise cancelling headphones.

When I first started reading about the ways other autistic people handle sensory issues in everyday life, earplugs & headphones were pretty constant. Specifically  noise-cancelling headphones. I found a recommendation for earplugs (etymotic earplugs, dunno a specific model), and decided to try them out. These are cool because you can still kind of hear human voices, but mostly they dull everything else. I wear them for live concerts (and sometimes bars), which are too loud for me to enjoy otherwise.

I can’t actually wear them regularly though, being cut off from basic noises actually disorients me more. I get hyper-anxious about where my body is, where other people are, and whether people will bump into me. (For similar reasons I can’t wear regular headphones while doing things either, which is very annoying. I would love to listen to music or podcasts while walking or shopping, but… nope)

Anyway. So I never really wanted noise cancelling headphones – I thought that if I found earplugs disorienting, a total lack of noise would be even worse.

Then I noticed how loud I was turning up my headphones on planes, and how many planes I’ve been on this year. With 7 round-trips so far this year (5 of which were 5+hrs each way), I decided the investment would be worth it at least for that. I picked these Bose QuietComfort 20 based on this wirecutter review. They’re in-ear headphones, which work better for me as I wear glasses (over-ears push the arms of my glasses into my head, which gets sore after a while).

I just got back from trip #7, and used the headphones there & back… and what a difference! Airplanes are loud! I didn’t realize what a good job the noise-cancelling was doing until I took them off to go to the bathroom, and almost jumped at the noise. Another interesting thing no one really says about noise-cancelling (or maybe it’s just a feature of the Bose?) – it doesn’t just block all noise. In addition to the active background-noise filtering, it also lets through human voices. The reason this is so mind-blowing to me is that this is the first trip where I could actually understand the announcements and flight attendants (mostly). Usually I can’t filter out voices from the plane-noise, but the headphones are designed to do that for me.

It was great. These are definitely going with me on every trip. I have a train-trip this weekend and I’ll see how they do there too 🙂

They’ve also already been useful off planes, too. The trip I got back from was work-related, with presentations for our entire company (probably 500 people in a room). For some reason, there were very loud videos playing while everyone got settled, and they weren’t relevant to anything, so everyone just talked over them… cue very loud, honestly overwhelming room. I popped in my headphones, and even when the relevant videos started (still too loud), I could clearly understand them because the noise-cancelling filtered out the background and toned down the volume to tolerable. 👍🏻

I still won’t be able to use them while doing things, but they’ll cut down on overwhelming situations and that’s worth it for me.

agender & pronouns

I’m agender. It’s not a big deal; to me it’s just like saying “I’m blond”. I don’t identify with either “man” or “woman”, so I like to joke that I just opt-out of gender. I don’t feel like I have a third, different gender either (I’m also not of a culture that has a third gender, so I wouldn’t call myself that regardless). And I don’t feel “in-between”. I just… don’t feel like I have a gender. That’s not a thing that applies to me.

I’ve grown up with society putting me in the “female” role/category, and my body is definitely female-shaped, so I’m generally very quickly read as “she”. And for convenience, I go with it. Personally I find ‘they’ hard to handle grammar-wise, and I don’t want to have to explain to every new person my specific version of “ze/ey” (however, if someone I know/meet uses these of course I’ll respect that, it’s just not something I want to do at this time). So, “she” it is.

And of course, now we’re popularizing pronouns in introductions, so I introduce myself and have to decide… “she”, which would cause the least friction but also put me in a “cis woman” bucket, or “they”, which would accurately reflect my (lack of) gender but feels awkward and obvious? Like I’m trying to be noteworthy. Being me, I opt for “she”.

This leads to another issue though, because now people think they know my gender, and it’s OK to use gendered nouns. This is… not okay with me. “lady” is the worst (like, “ladies first”), but really anything gendered just feels wrong. It’s like… “you are making an assumption and you are wrong.”

But without doing a “they” pronoun shortcut, how do I indicate that I’d prefer gender neutral language used for me? Should the pronoun intro now also come with a “she, but…”?

Like, I just want to introduce myself, not have the what even is gender conversation.

I found this post in my drafts, I started it in February after a work trip. I like what I started with, but I didn’t know how to end it. I still want to publish it, so here’s the part I wrote then.

This post I read the other day had me frustratedly thinking “yes, this, all the time” through the whole thing.

We use this blog to talk about our problem-solving, our resilience, our creativity, our self-accommodation and how those things make us successful by our own standards, but, like, sometimes there’s just no way around this:

I need you to be more careful.

I need you to pay more attention to the world around you and how it works.

I need you to watch your volume and where you are in space.

— Sometimes it’s not me, it’s you.

I just came back from a week in Amsterdam, traveling (by myself) to meet up with some coworkers (about 12 of us). There are things I try to do on these trips to make sure I’m still functional at the end, but a lot depends on the activities and interactions with my coworkers.

Most importantly is checking out the locations beforehand. On this trip, we booked hotel rooms and an airbnb apartment to work from. To be honest, I didn’t do as much of this step this time – I was in the hospital for a few days only 2 weeks before going, to have my gallbladder removed. In previous trips I’ve done things like picked out a few nearby cafes, so I could take a walk if needed. These meetups are very discussion focused and involve a lot of working closely together, both of which I find tiring, so I try to build in breaks every few hours. We took longer lunches this time, so I didn’t need as much of this.

We usually pick a project to work on as a group. Sometimes that means pair programming. I learned on my first meetup that I freeze up when pairing, so it’s a counterproductive task. If it sounds like pairing might happen, I would try to discuss alternatives — luckily this hasn’t come up since that first trip. I did end up working on a separate project for most of the week, though. I like being able to pace myself, and deep-dive into different things while working without feeling like I’m holding anyone else up.

I don’t think that defeats the in-person-ness of it, either — on the walks to dinner, I often ended up talking about what I’d found.

For the group discussions (like informal meetings), I also brought along a small bean bag to fidget with. I don’t think it was distracting? I hope not, anyway. We ended up going late most nights (until 2am once), so having a small focus object kept my attention on the topic… even when it was stuff I didn’t care about (hey, it’s a group of 13 people, all interested in different aspects of the company, it’ll happen).

This time, I made it through the week without crashing. I’m definitely feeling the effects now, though — exhausted and strangely anxious, hyper-aware of sound so much that I need music on to avoid misophonia, and still jumping every time my partner says something. Executive function is also a little shot, I keep having thoughts fly through my head and immediately forgetting them.

I think I might still have some jet lag going on, too.

I should be better in the next few days — but then I’m going on another trip, so I’ll start the travel routine all over again. Luckily I know the area a little, I’m staying in the same place I did last year for this conference.

And that’s where I ended. That second conference went well. It’s not a particularly accessible conference, but I knew that going in, and mostly stayed at my sponsor booth with coworkers. A few months later (today), I’m at yet another conference. Again, one I’ve been to before. I’m glad this one hasn’t changed venues, it’s nice to know where I am.

Tonight I decided to check out redbubble to see if there were any new interesting autism/neurodiversity related products up. I figured, it’s basically April, if anyone’s posting anything new it’s probably up now… And so I went, and searched “autism”. Of course, you probably know the things I ended up with, but in just the first page I found such amusing results I had to share.

Continue reading →

Organizations to support, disability version

A lot of people have published “how to help” posts after the election. It’s a great idea — there isn’t much for a single person to do, so a lot of these lists focused on getting donations to charities and advocacy groups already doing good work. Here’s one example, and here’s another. And these lists have clearly worked, with many organizations seeing big surges in donations.

Unfortunately almost all of these leave out organizations for people with disabilities. A Trump presidency will be a disaster for PwD too — this Vox article does a good job piecing together what policies Trump will likely have and what they’ll mean for PwD. In short, drastically reduced aid and insurance for healthcare (which can be a significantly higher cost for PwD), possibly reduced privacy rights, and regressions in policies that support education & services over institutionalization.

So… how can you help? I’ve collected my own list of organizations you can support:

National Council on Independent Living: “NCIL advances independent living and the rights of people with disabilities.” They support state councils, and Centers for Independent Living, too. CILs enable disabled people to live on their own, by advocating for and offering the supports they need in the community. Use this site to find your local CIL, and you can donate directly to your community – for example, in Cambridge, MA, my local CIL is this one: Boston CIL.

The Autistic Self Advocacy Network: This org has chapters nationwide (and a few outside the US, too). They provide resources for autistic people, and also advocate for better public policies — often working with other disability orgs, or LGBTQ orgs, etc. You can check out their 2016 report for some of the work they’ve done this year.

ADAPT “is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.” I heard about this group when they protested in Boston and at the JRC, to increase funding for Community First Choice and to transition people out of nursing homes and institutions (like the JRC).

Asperger/Autism Network: A statewide (Massachusetts) org which provides services for autistic people and their families, from social and support groups for all ages, job and life coaches for autistic adults, even couples counseling for ND couples! Considering that most autism organizations & charities focus on children, I love that this one has so much for adults too.

Helping Educate to Advance the Rights of the Deaf (HEARD) “is an all-volunteer nonprofit organization that promotes equal access to legal system for individuals who are deaf and for people with disabilities” Their facebook page has more recent updates.

Perkins School for the Blind: In addition to the school, they also have an international arm, programs for assistive devices, and a library of braille & audio books, magazines, and more.

American Association of People with Disabilities, “a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.”

I hope at least one of these organizations captured your attention enough to set up a donation! If you can’t afford to donate, but do buy things on Amazon, a few of the above also use Amazon Smile (which donates a small portion of your purchase to the charity you choose, as long as you buy through smile.amazon.com).

Edited to add: I’ve just found this tumblr, What is ableism, which includes an ableism primer, a “how to unlearn ableism” post, and their own list of organizations to donate to.

Web Accessibility & Autism

I recently went looking for resources for neurodiversity & web accessibility. I have an article about event accessibility (which features some neurodiverse-friendly tips), but I wasn’t sure about anything specific to websites. I ended up focusing on autism, rather than all of the neurodiversity umbrella. Here are a few things I found:

I thought I’d also throw my own two cents in, and share my perspective on some accessibility features that improve my web experience. This turned out to be harder than I expected though — a lot of things online I find rather intuitive, and it’s really more the “real world” that I have trouble with 🙂

Video captions, audio transcripts

I’m not a fan of audio. Well. I like podcasts while doing chores, but that’s not really here nor there. If I’m watching a video of a conference talk, for example, it’s much easier for me to focus on the video if the speaker is captioned. On some days, when I’m not tired for example, this isn’t as much of an issue. On the other hand, today I kept going back and forth watching a 30min talk in 5min increments because I just couldn’t keep track of the speaker.

I also find transcripts easier to skim as opposed to listening to an audio segment — and if I want to listen to audio I need to get off of my computer. That’s probably more of an “everyone” kind of thing, though, it’s just hard to listen to one thing and read another at the same time.

Clear indications for permanent changes, allow going back/undo

This one’s mostly for forms. Often forms are broken into pages. This makes sense, especially for longer forms, but sometimes a question clarifies something I misunderstood in a previous question, or reminds me of a better answer, etc. I have a habit of filling out forms non-linearly, then reading over the entire thing at least 2 more times to make sure I’m all set.

(Why do I do this non-linearly? I write non-linearly too, jotting down words as they come, because I don’t know if I’ll be able to express the same thought I was having if I wait. I feel like that might be atypical for autistic people, but perhaps not — I’ve never asked anyone.)

Typeform, despite having very pretty forms, really startled me the first few times I used it. It looks like you have to answer the questions one at a time, and can’t go back. It turns out that you can scroll up, but it’s not immediately obvious. Since forms can be pretty important, it’s best if they’re as low-stress as possible.

Nothing too jarring or startling

Autoplay audio or video, bright flashing colors, moving animations (especially if they slow down the rest of my tabs) are a surefire way for your site to be auto-closed. I tend to leave my computer muted, just so I don’t jump out of my skin every time I end up on some news story with autoplay video clip.

Emoji, Emoji Reactions, Likes

This one’s silly, but I have trouble phrasing simple comments that mean “I like this”. Having reactions or likes lets me easily indicate to the author, I saw this, I appreciated it, and I want you to know that — without spending 15+min trying to phrase that in way that makes sense.

 

Autism, Coworking, and Stereotypes

In my day-to-day life, I work for a company called Automattic. We’re totally distributed – everyone works from home, and there is basically no central office. I have a home office, but I also have a membership at a local co-working space. This is pretty cool, and it gets me out of the house when I’m restless.

You can read some details about how it works on their site, but basically it’s a place with a bunch of open tables in different configurations, and I can drop in and use one any time I want. There’s also a big community aspect, since most people using the space are entrepreneurs running small startups, or freelancers/consultants — people who don’t have coworkers to socialize/network with. I end up not engaging with this much, since I do have almost 500 coworkers – they just all work in different cities. But sometimes I see an email go by that catches my attention.

“Autism Spectrum Disorder in the modern workplace” was that a few weeks ago. Another workbar member was writing an article & wanted input from anyone with experience with ASD. Hey, I do! So I emailed with him, we chatted some via email, and he published the post: What to Know When Coworking With Someone With Autism (I’m the “Kelly” quoted)

In addition to the stereotypical “Blue Puzzle Piece” stock photo, I felt like the whole thing was kind of … othering-while-trying-not-to-be. I think the author went into the article expecting to find that “autistic people have trouble sharing workspaces.” In our emails, he asked “What is your feeling towards the flexibility, shared resources, and social aspects underpinning the coworking experience? Do you devise work-arounds or embrace them?” Maybe he was reading too much into a previous email I sent, but I feel like he was making assumptions about what I have trouble with, rather than letting me talk about what works/doesn’t (like, I don’t really have trouble with the “fluid workspace”, I just answered his question).

Unfortunately, I think the article spirals a bit at the end. For one thing, I’m not sure what this is meant to mean: “Unlike other civil rights movements, autism awareness suffers from its own diversity.” Every civil rights movement splinters on some topics, because every person has different priorities. This is true in feminism, queer activism, disability activism… Autistic activism is not really any different in that regard. Also of all things, Big Bang Theory is divisive amongst geeks in general, so a strange thing to highlight here.

The snide comment at the end doesn’t help much either. “It seems that with ASD there is no such thing as too much information.” It really set a bad end-note for me, because it’s a remark commonly lobbed at autistic people when we’re talking about a topic of interest. I mean, it’s also true, given time we’ll tell you way more info than you need (I also almost sent books & blog posts but was running short on time) – but it’s not strange to assume someone writing about ASD would want to know more about it before writing. Maybe it would have prevented this ill-thought comment.

Overall I’m only being so critical because it’s an important topic, and I’m not sure it was handled as such. There were also good things— he’s at least trying to have the discussion. I’m also glad he was able to find autistic people to speak with, and that we’re well acknowledged in the post. I was a little worried I’d be a footnote.

(Neither here nor there: he also mislabelled me as “having aspergers” when I’m pretty sure I only ever said “I’m autistic”…)

Weekend Reading Wrap-up

I appear to have stuck myself with the name, but I’m not actually doing this weekly… oh well.

As I started this post (ummm weeks ago?), I noticed the first few articles I was sharing all had a theme of “autism stereotypes” – so let’s go with it. Here are a few posts I’ve read since then all around that topic.

As a result of Kanner’s theory that his syndrome disproportionately affected hyper-ambitious, upper-middle-class families, two generations of clinicians and researchers would view autism primarily as a condition of white children. With only a few exceptions, black children were virtually absent from the autism research literature for decades.

— The Invisibility of Black Autism

“Autism services are not always LGBTQ friendly or affirming, and yet LGBTQ community events are not necessarily accommodating to autistic people,” she says. “So then I end up feeling kind of stuck in the middle, [and] unsure where to go or which one can be my community. What I’m worried about is that because scientists and researchers and doctors and medical professionals are trying so hard to figure out what autism looks like in girls and women, they’re going to accidentally end up coming up with a gender stereotyped idea of ‘girl autism’ versus ‘boy autism.’”

— Understanding Gender Bias in Autism Research

Leading researcher Simon Baron-Cohen likened Autism to an ‘Extreme Male Brain’, arguing men are innate at logical thinking and women are wired for empathy. The soundbite of this study upholds sexist stereotypes by refusing to explore gender roles as cultural constructions.

— Represent Autistic Women in the Media 

I can’t just be autistic, I have to be vocally autistic. I have to be louder, bolder, more willing to put myself out there, if I’m going to be seen at all. I have to be willing to be told repeatedly that I’m not the person I know I am, because if I don’t make it a point to tell people, they’ll never know.

— The Purgatory of Passing: I AM Like Your Child

This last one… is definitely something I’ve been feeling lately. However, with that also comes some complicated other feelings, which I feel like Lydia X. Z. Brown hit on perfectly in their piece on internalized ableism:

But it’s also scary because I’m becoming intimately acquainted with my own internalized ableism in all the little dark crevices in corners of my mind I forgot existed and haven’t thought to check, and I can’t shake the immediate thoughts that I should try harder not to seem so autistic in public or else what am I doing wrong that other people can tell? Essentially, I’m finding that my reactions to this ongoing realization of just how much my neurodivergence shows are that there is something wrong and that I should feel ashamed and self-conscious if (non-autistic) people can tell that I’m autistic.

— Hello, Internalized Ableism

I will probably revisit this ^ in another blog post… I think I’m coming at the same idea from a slightly different way, but at the same time this really resonates with me.

That one syllable haunted me. In a room full of autism awareness, it signaled that autism acceptance is still a distant goal.

— Acceptable/Unacceptable

This one is more hopeful than the quote I’ve picked makes it sound – there’s the feeling that at least autism acceptance is happening, even if it’s just one family at a time.

No, not everyone is “a little autistic”

Earlier this month, I found a great new blog by an autistic woman, Autism and expectations. Two of her posts so far have touched on how “I do that too” is not really a helpful response to someone describing their autistic experience.

People say this because it’s hard to describe being autistic. Often you end up clutching a collection of behaviours, such as social exhaustion, hating the phone, wiggling your feet.

And other people say, “I don’t like using phones either, and I wiggle my feet, and I’m shattered after a night out, maybe I’m a bit spectrumy!”

— From Re-thinking things through an Autistic filter, with follow-up “I do that too” The great miscommunication.

I think the post is great, and it’s actually gotten some coworkers talking about this issue in terms of other disability/mental health issues (since autistics aren’t the only folks dealing with this sort of thing).

But I also wanted to mention another way this response is unhelpful…

I was officially diagnosed about a year ago, but it took me about 2-3 years before deciding to see someone. In that time, while learning more about ASD, I’d been contemplating, analyzing, and reflecting on myself and my interactions. Each time I did something, I tried to sort it into “autism” or “normal, just weird”. Unsurprisingly, this was really difficult.

If “everyone’s on the spectrum”, if neurotypicals don’t like phones, get overextended when dealing with too many people, can be less socially adept… was I just making a big deal of a few common issues?

I assumed there must be some missing peice of “Autism” that I wasn’t experiencing.

I had myself convinced that there must then be something wrong with me, since I had so much trouble with normal things, things everyone dealt with. And I was missing that hidden autism thing. So instead, I just felt like I was a failure.

Turns out there is a “hidden autism” thing, which isn’t communicated well in “I don’t like crowds/phones”. It’s actually a few things… and they might not even be the same in all autistic people. What finally clued me into this was actually to just ignore neurotypicals for a while.

I dove headfirst into any autistic writing I could find. The #ActuallyAutistic tags on Tumblr, Twitter, and here on WordPress.com were great for hearing from real humans. I found a few blogs to follow (I mentioned some last post). I stumbled onto Disability in Kidlit, a great YA book review site focusing on books with disability topics. They had an “Autism on the page” series, where I found Harmonic Feedback and Rogue, and it clicked. I saw the way I communicated reflected back. Reading Rogue, I remembered being totally confused in jr high school; it captured those emotions I remembered (and the reasons behind them) so much better than anything else.

Finally I felt like maybe my struggles are not the “common issues” it seemed like. And from embracing that, I was able to stop fighting my way through things I “should be able to handle”.

By now I’ve read a few of the comments on the post, and heard from a few non-autistic coworkers who have issue with this idea. The “I do that, too” is simply a means to connect, a conversation bridge. How does trying to empathize stop conversation?

Perhaps they’re not the type of person this is written for, but that’s never how the “I do that, too” sentiment has been said to me.

Perhaps it would be a means to connect… if I hadn’t spent the first 27 years of my life thinking that “everyone does this, too — it’s just me that doesn’t get it”.

April is Autism *Acceptance* Month

April is Autism Acceptance (or Awareness) month, and you might be asked to Light It Up Blue to show your support of Autism Speaks. However… if you want to actually support people with autism, I’d suggest making a donation elsewhere.

There’ve been a lot of posts about what’s so bad about Autism Speaks, so in a quick summary: the message in almost all of their advertising is that autism is a disease hiding the “true child” (implying that people with autism aren’t real people), and that we need to fix autistic people by curing autism (and thus most of their effort/money goes to finding the cause/a cure). Unfortunately, many autistic people (myself included) disagree with this perspective, as we’re definitely real people, and many of us feel our autism/aspergers gives us a unique perspective on the world – and “curing” us of that would make us totally different people.

There are other problems with Autism Speaks, but I’ll let this post explain them all.

So, what should you do instead? Celebrate Autism Acceptance Month — honestly, most people are aware of an autism stereotype, take some time to learn from actually-autistic people. A short list of blogs I’d suggest:

There’re way more blogs than just those, you can also click around the neurodiversity and #actuallyAutistic tags on WordPress.com and twitter. Around April, the tags #REDinstead and #WalkInRed are also used, as a counterpoint to the blue of Autism Speaks’ event.

What if you still want to donate? Check out local Autism support organizations in your area, or donate to the Autistic Self Advocacy Network or Autism Women’s Network.