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.

Weekend Reading Wrap-up

Okay, so maybe 2 weeks of reading. This week’s topics include gender (+ alcohol), race (+ alcohol), more gender, autism, and mental illness.

Later, I’d hop into a cab, coiffed and pumped for a television appearance, ready to talk whiskey.

And then this would happen: “What does it mean to be a women in whiskey?” or, “What kinds of whiskey do women drink?” or the nebulous, “What can you tell us about women and whiskey?”

— Whiskey-Drinking Women Get Stereotyped — What If Men Did Too?

I bet that sort of thing comes up in every “traditionally male” industry… Saw this posted n a group chat after someone else was talking about an interview asking “What’s it like being a woman in STEM?” and how frustrating that is.

A recent Nielsen study commissioned by the Brewers Association found that while black drinkers compose 11.2% of the US population, they consume only 3.7% of the country’s craft beer. Compare that with the 80% of craft beer guzzled by whites, who make up 60% of the population, and you’ll start to get a sense of the size of the divide.

—There Are Almost No Black People Brewing Craft Beer. Here’s Why.

The rather obvious answer is systemic racism, but the article details some of the beer-specific history that got us here.

But for transgender and gender nonconforming people like myself, the question of what to wear to work becomes an exhausting question of identity and of survival. For us, the question changes from “how do I present my best self at work?” to “can I present my best self at work?”

—Why I’m Genderqueer, Professional and Unafraid

“Professional” clothing is quite gendered, and that’s definitely one reason I prefer to stay in the “draping jersey shirt” area of clothing. This is a great discussion of navigating professionalism when you don’t fit “white cis person”.

The “truly stunning” findings, published this month in the journal Pediatrics, show that transgender kids like mine (those allowed to live in the gender they say they are) are just as mentally healthy as their non-trans peers. They aren’t depressed or riddled with mental health diagnoses. In fact,  emotionally, they’re pretty average.

—Trans Kids Not Necessarily Crazy

A parent writes about the results of a survey on the mental health of trans kids, unsurprised that those allowed to live as their actual gender are just as “normal” as their cis counterparts.

Researchers are aware of these problems. But because so few elderly adults have an autism diagnosis, healthcare workers have little experience helping them navigate the pitfalls of old age.

—Adults with autism face old age without much support

Following up on The Missing Generation, this post goes into more detail about the issues older adults with autism face.

I also want to link To The Friends That Knew I Couldn’t Do This ‘Mental Illness Thing’ Alone, but it’s not quote-able, it’s almost like a poem? Any quote I pulled out would not do justice to the weight of the whole piece.

Weekend Reading Wrap-up

Some things I’ve read this week that I think are worth sharing.

When I ask high school students what they’d like to learn how to make if they knew how to hardware hack or code, they say things like, “Maybe a social app.” “Maybe some kind of a website.” But you get very different answers if you ask them, “What household objects would you enchant if you were in a Hogwart’s charm class?”

— Art and Math and Science, Oh My!

If Chris is a hero merely for hiring someone with a disability it lets all of us other “non-hero humans” off the hook. It also implies that there is something inherently wrong with Sam that it took a hero to hire him in the first place.

— Ellen DeGeneres’ Video About the Starbucks Barista “Sam with Autism” Shouldn’t Make You Feel Good

But this was only the first of numerous – too many to count – anecdotes about autistic children which described them repeatedly as odd, strange, violent, disconnected, destructive, dangerous, difficult to handle, their behaviors meaningless, their interests obsessive. As isolated, unspeaking, severe, uncooperative, and having illogical anxiety. They describe autistic children as vanishing, having broken minds, as screamers, runners, and head bangers. These are the words that Donvan and Zucker use to perpetuate a tragedy narrative that is meant to justify every horrible thing that will be done to these children by parents and professionals.

Cognitive Dissonance In A Different Key, by Erin Human

One of the most sweeping arguments used to silence disabled activists in the debate was the argument that “the discussion was about the environment, not disability”. The thing is you can only have one without the other if you have somehow managed to exclude disabled people from the human race.
[…]
This debate has never been about sacrificing the environment for the sake of disabled people but asking to be considered as part of the solution.

Oranges, Access, Opposition and “Yes, but…”, the follow up to When Accessibility gets Labeled Wasteful

Lastly, a book I’ve been looking forward to, On The Edge of Gone, came out last week… but I still haven’t started it.

A Brief Response to Better One on Ones

Last week this post about One on Ones showed up on my twitter feed. The gist of it is that one on one meetings are good, and it gives a few pointers for how to make them really useful for all involved. This was all great advice, except for the comment that remote teams should use video for meetings.

As a remote team, you should insist that everyone talk over video.

Seeing the other person is meaningful. Body language speaks volumes, and even when you aren’t looking for anything, the human connection is worth having the redundant “Skype hates me!” commentary once a week.

I understand what they’re saying — for a lot of people this is true and a great way to connect. But I really think that you’ll get a more honest/productive conversation if you leave the method of communication up to the participants. Video calls are just not the best medium for everyone, for any number of reasons.

For example: When I’m on a video call, it’s hard for me to process what’s being said with enough time to respond before the topic moves on. Sometimes this means I only half-answer a question, or maybe over-explain because I didn’t catch the beginning, but mostly it means I don’t speak up as much as I should.

This idea isn’t really anything new — “video is the best method” is pretty common. This sentiment that it should be the only way to do a one-on-one, however, is what has made it difficult for me to request text-based chats. I’ve never really had anyone push back on it, but I still feel a little weird asking about it when I have to meet with someone new.

Instead of pushing video, we should ask for & accommodate preferences (as possible — just like I have trouble with video, I know others have trouble with text). If we do this, people who need the accommodations won’t need to feel so “special” interrupting the status quo, and likely will be happier employees. Plus, if they’re not, now they’re better enabled to do something about it 🙂

 

annoyed at a conference from six months ago

Last night I was reading a blog post, “The Year 2015 was a Breakthrough Year for Autism”, and I noticed a mention of a “Neurodiversity in the High Tech Workforce” conference in silicon valley. This seems really relevant to me, no? Apparently it was in June at Microsoft, I learned after googling for it… but the only references I could find were on a dyslexia website. Luckily, they had videos of the event, so I checked out the talks.

I was pretty quickly disappointed to see that actually, this is a dyslexia conference, not really a “neurodiversity” conference. I decided to read the talks just to see if anyone brought up other kinds of neurodiversity.

Unfortunately I only saw awkward comparisons about how autism is the “opposite” of dyslexia, and one story about an autistic coworker that didn’t really have a resolution, but was just a point to make. I also searched through for ADHD, but this was also only used as a footnote, “this is sometimes true for ADHD too”.

In fact, “neurodiversity” was only mentioned twice, and never defined. The whole conference left me feeling kind of weird, like it was tagging along onto a buzzword of neurodiversity, without actually engaging with what the “diversity” aspect meant.

Anyway, the post that I found this on claims that neurodiversity panels are becoming more mainstream. Perhaps in 2016, there’ll be another “Neurodiversity in Tech” conference – one that encompasses all the ways to be neurodivergent. I’d love to attend 🙂