Thursday, February 4, 2021

Welcoming Autism Into Pixar's World: An Interview With Loop Director Erica Milsom

For people in under-represented communities—autistic people included—there is nothing quite like seeing "someone who moves like you" in mainstream storytelling. We talked with Pixar's Erica Milsom, who wrote and directed the lyrical SparkShorts film Loop, about the importance of listening to people who actually inhabit the worlds creators want to bring to the screen, the power of storytelling and representation, why it matters that Loop's autistic character Renee is both a girl and a person of color, and the importance of connection on a purely human level—especially between people who communicate or act differently from each other.

Loop writer and director Erica Milsom. Photo courtesy Pixar.
[image: A white woman with a silvery-gray bob and clear-framed glasses.]

Content note: mention of children of color killed by police

Thinking Person's Guide to Autism: Erica, I just want to thank you so much for agreeing to this interview, and for the work you’ve done on Loop. It is such a remarkable film. I can’t tell you how many people we’ve heard from in the autistic community, autistic people themselves and also parents of autistic children and people who work with them, about what it means to see someone like our kids, and especially our kids with high support needs actually being represented in not just mainstream but THE most mainstream way possible. I mean, Pixar, it doesn’t get bigger than that. And to COME from Pixar! Because a lot of autistic people, my son included, like to watch videos over and over. And the fact that Pixar does such high quality materials means that I don’t mind watching Monsters, Inc. five hundred times because it’s a really great movie! So we’re grateful to Pixar on so many levels.

But mostly we’re grateful because when it comes to autism there’s a lot of awareness, but not a lot of acceptance—if that makes sense. Just because you’re aware of autism doesn’t mean you have to do anything about it. But with acceptance you are actually working towards equality and understanding.

Erica Milsom: Thank you, I totally get that.

TPGA: And that’s what I took away from Loop: Just because people don’t communicate in the same way doesn’t mean they can’t connect as human beings. And so again I want to thank you.

Milsom: Thanks, it means a lot to hear that.

TPGA: So I wanted to ask, how did you come to Loop? How did this story come about?

Milsom: It’s funny, because when I asked to be part of the SparkShorts process, which is to make an animated film, I hadn’t really considered making animated movies. It wasn’t something I thought I’d have an opportunity to do. So, when I got the opportunity  I had to come up with something that would be both personal, but also new to the studio. And when you do that, you start to review all the existing features and shorts. And we’ve created a lot of worlds, I was thinking “we could go… under water? In a cave?” which Burrow just did and it was beautiful. But in just searching for a world, I felt like I was reaching for something that didn’t have a personal connection.

And so I revamped my thinking to, “Well, Erica, what worlds have you been to that other people might not have, or just might not understand?” And I thought a lot about my experiences with people with disabilities, and worlds where people communicate very differently, where people move through the physical world differently. And I really enjoy those worlds. 

I grew up in a town that had kind of a nursing home with people with lots of different kinds of disabilities. Not just elderly folks, but people with high support needs. During the day there weren’t a lot of programs, so folks would just be out in the community in this small town in Colorado, and we’d all see each other and interact. And it was fun, and they were different, and I think that in this small town where there’s a lot of normative rules about how you behave, when you have these folks who communicated differently, or enjoyed different things—who were adults who loved to talk to you about your dolls, or things like that—it was really fun for me. I just had a real affection for folks with disabilities, basically, because I felt like they brought something new to my world. And then I did volunteer jobs as I got older, and worked in the world of disability, and began to think that this “world” was a world that we could explore. I decided that Loop should explore the world of communication differences and disability.

TPGA: That’s so great to hear, because one of the things we work for in autism acceptance is the whole idea of people with disabilities have always been part of communities, but they’re also so often segregated. So you actually have lived experience with disability being normalized in your community. And that’s just remarkable, having that background and being able to bring that through this mainstream lens—that’s really fantastic.

Milsom: Yes! And, I wanted it to be a happy short. I wanted to explore a sense of possibility, and find a happy ending, one that felt realistic and relatable, for adults and for kids. That’s why I put it on a canoe, because for me a canoe is the happiest place on the planet [laughs]. That’s the other half of it.

Still from PIXAR's animated film Loop. A Black teen boy and girl are seated in a red canoe together. The boy is holding a paddle.
[Image: Still from PIXAR's animated film Loop. A Black teen boy 
and girl are seated in a red canoe together. The boy is holding a paddle.]

TPGA: Canoes are great! I don’t know if this came up as part of the background of making Loop, but that kind of exercise, that kind of “heavy work” can be really regulating for a lot of autistic people. Not everyone. But my son needs to do a lot of exercise every day just to feel good in his body. So this hard work, something rhythmic like rowing, or even being in a boat, those are things that a lot of autistic people find comforting and reassuring. So when I saw the short, I thought, “Of course she’s in a boat” [laughs].

Milsom: I love that, because when we finally cast Madison Bandy, our voice talent for the character of Renee, her mom said, “I can’t believe the connection here, because Madison is a water baby. She feels safest and best when she’s in the water. She does surfing, she does boogie boarding, she swims a lot.” She hadn’t been in a canoe yet, but her mom was just so happy to see that this was the representation we were going to have, because Madison’s out there, and also she vocalizes a lot when she’s swimming. The joy is so profound—she makes these huge noises when she’s in the ocean.

The synchronicity made me happy. I’d just thought of it because it made me happy, and then seeing how meaningful it is to our character and her experience in regulation. I guess I never would have thought about it as regulation—I didn’t know that word [laughs].

TPGA: Again, this speaks to the universality of things that bring us joy, and connecting over that. It’s just so important. And also with my son, we live in a house with a pool so that he can swim as often as he wants to. We made that decision, that workaround. He taught himself how to bodysurf. He’s always been a water baby too, so that’s really cool to hear.

Milsom: I love it!

TPGA: Can I ask, how did you come about casting and finding Madison?

Milsom: When I thought the short was going to be about a nonspeaking person, some folks in the studio felt we’d need to get a non-disabled actor to play her, and I said, “Oh, no.”

If you’ve been in environments where people vocalize and use different methods of communication, I feel like that voice is so distinct and specific. I really wanted to hear that honest voice in the short. I used to be a job coach for people with disabilities through the Volunteer Center of San Francisco, and I had a lot of connections in the disability community here. So when our casting director said, “I’m not sure how to do this,” I said, “It’s OK, if you show me how to write up the call, I can figure out how to populate it in the world so we can get enough folks.”

I reached out to places where I knew there were artists with disabilities, where there would likely be folks who were nonspeaking and autistic, like the Pomeroy Center, and The Arc of San Francisco, and all the art centers, like Creative Growth, NIAD, Creativity Explored, and The Cedars. The Bay Area has these amazing facilities that are mostly about visual art for folks with disabilities, and particularly for people with developmental disabilities.

I feel like there’s this interesting thing also, with artists, where they practice one art form—but if you give them access to another art form, their capacity to be creative is not limited to one space. Look at Jim Carrey: You have this amazing actor/comedian and now painter. 

I sent the call out to all kinds of contacts in the disability/art world, and said, “Do you guys know anybody who might be interested?” Then we identified three folks and listened to them in situ where their places were. And Madison was the one where I could feel, “Oh yeah, she’s got the voice.” So Madison came from the youth program at Creative Growth. We pursued her family as well as her, because I feel that understanding folks’ support network is super-important to being engaged. I feel that they are the ones who help facilitate her work, and who can also be translators as needed, or backup on the goals and tasks that need to happen before recording: What the story is, learning the ringtone, that kind of stuff.

And Madison is a really interesting painter, who also has this performance part of her that is so easily accessible. We did hang out with her and record her in her home, and many of the vocalizations we recorded was done sort of documentary-style—just being there, and listening. But there’s also directed work in there that is her acting, that is her performance. And I think that she is as playful as an actor would be. She really enjoyed it, and she really dug into finding the words or even the sounds we needed in different situations.

TPGA: That’s awesome.

I don’t know if you’re aware of this, but there’s been a real swing towards more authentic casting with disability in general, which is so great to see. If you watch The Crown, there was an episode [spoilers] in the latest season that takes place in an institution for people with developmental disabilities. Some of the cousins of The Queen had developmental disabilities. Burke’s Peerage has them listed as dead, but they were actually hidden away because of concerns about “purity” in the royal line and questioning the validity of the monarchy. And in casting, they found people who had lived in similar places but no longer did, so the acting and the look could be authentic.

If you talk to autistic and disabled actors, a lot of the time it’s not necessarily that they have a problem with an actor who’s not autistic—because autism can be an “invisible” disability—being played by a non-autistic actor, because that’s acting—as long as they’re well-informed. But with someone with a developmental disability, you don’t want to have an I Am Sam situation, because it’s really hard portray those characters without the end product feeling like you’re mocking people with disabilities.

That’s something that’s been an issue with other onscreen representations that aren't informed by the autistic community. Autistic people will say that the way non-autistic actors plays high-support autistic characters reminds them of the way that children would make fun of people with developmental disabilities to their faces—it’s a caricature, it doesn’t seem like acting. So yet again, another reason why it’s so meaningful to see that you had cast an actual high-support autistic person as Renee.

It means a lot. It means visibility. And it means work! In an environment where people with disabilities are much more likely to be under- or unemployed, seeing that people with disabilities can get work.

I know that you worked with the Autistic Self Advocacy Network on developing the character, and I’m wondering if you knew that was the right thing to do intrinsically, or if you reached out to them and they let you know? How did it go, how did they inform Renee’s character?

Milsom: I made a film previously called So Much Yellow, which is about institutionalization, and features a family, the child of whom has Down syndrome. And it’s on the day that they are … taking their child to be institutionalized. And it’s based on the story of a person I know. And because of that film, and the Kickstarter campaign that we did, I had become aware of the Disability Visibility movement. 

In our campaign, we used the word “inspired” by, which is a super-Pixar word. Pixar is always inspired by things. I said we were “inspired by” the story of our friend—but in the disability community, “inspired by” institutionalization is problematic! So we kind of messed up in our outreach. Big time.

My friend Jim LeBrecht, who made CripCamp, and whom I’ve known for a billion years, said, “Erica, you guys are getting talked about over on the disability network, so, take a look.” And in a rare move as a filmmaker, I actually wrote back to them, because I felt so grateful that they brought it up, and I just needed to let them know where that word came from, and what we actually meant because the film wasn’t out yet. And though I was embarrassed by our mistake, from that time I just started following and listening. I had been aware of disability inspiration porn type stuff. But I think when you start really listening to disabled people—this is what I realized from the Disability Visibility group on Facebook, and then following Alice [Wong]—you realize the nuance of that.

So I had just spent many, many years listening. And that was one of the reasons that when Loop came up, I knew it had to be a buddy movie. It’s about two people finding their way to each other. It’s not about an abled kid fixing life for a disabled child; our characters are figuring something out, and they’re receiving something from each other. And that core principle of a balanced story with a truly shared story came because of listening to disabled people. 

And regarding the Autistic community specifically, I knew about “nothing about us without us,” but I didn’t know about ASAN [the Autistic Self Advocacy Network]. And I really didn’t know a lot about autism. I just knew that I had met nonspeaking people before, but I didn’t know why they didn’t speak. 

Once we decided the film was going to be about autism—which we actually did in concert with parents from Pixar, and I interviewed a lot of parents who had kids with communication differences—I asked, “How would your kid react to this canoe trip? What would happen? How would they feel about it?” And the folks whose children had autism started to expose me to the idea of why they would be nonspeaking, how stress can affect communication, and also sensory differences. And I thought, “Holy crap, that’s amazing!” And then I was like, “OK, we’re going to make Renee autistic and nonspeaking.”

And from that moment forward, I knew I needed to find autistic people to listen to, versus parents or therapists. Because of the “nothing about us without us” thing, but also because of the experience I’d had in listening to disabled people: the sensitivity, the nuance, there’s so much you can get from people’s lived experiences. As opposed to reflected through a parent. I mean, parents are great! Therapists are great. Allies are great. But for this film it was all about point of view.

So first I got on the internet, and before I found ASAN I found a bunch of people talking about autism from their own point of view on YouTube. For about three months! My husband said, “You’re obsessed with autistic YouTube!” But it was amazing! I feel so grateful to the autistic community because they are telling their stories. If you’re curious, and you want to understand something, you can go and find it presented from a first-person narrative, right? Straight from the person who’s experiencing life. That was my first thing.

Also, you have to get permission and do a lot of legal stuff to use a formal advisor at Pixar. So I thought at first, “I’ll just listen as much as I can.” Then as soon as the project was formalized, it was going, I thought, “ I need to find someone.” And I think I just looked up “autistic support groups run by autistic people,” and that was how I found ASAN. I wrote an email to them, and I read their books, and that is how we got in touch. We asked them because we wanted to find an autistic person who had been formerly nonspeaking but was now able to communicate with words or by speaking, and they hooked us up with someone in their leadership who had that background.

TPGA: That happens more often than people think.

Milsom: Yes! I hadn’t understood communication as a part of autistic difference. and that spectrum variety of it—how it can manifest in so many different ways: to using lots and lots of words and being highly verbal, to being non-verbal and not using a lot of words. That swing, in terms of finding a way to be more comfortable using words.

We presented it to [ASAN] at two different stages, and we could always talk to them with questions. But the first time we presented it, it was in the story stage, which means it’s all black-and-white drawings. And I remember very clearly, because we showed them the short—and we can see them on a Zoom link—and the two advisors, this is what they did: [looks away from the Zoom screen]. And I had spent enough time in the autistic world that I thought, “I think this is OK, I think this is just processing.” But my other crew members thought, “Oh, they hated it.”

TPGA: No, they’re listening!

Milsom: Yes! They had watched it, and they were processing—they were finding words. And I thought that was such a great thing.

I feel like for us, as a crew of (as far as I know) all neurotypical people, to have that powerful relationship to autistic people where you are getting notes from them, you’re listening to them, you’re seeing how their process might be different from your process, but has something so powerful to add. The first thing that came out of one of our advisor’s mouths was, “I have never seen myself in any way like this ever on screen, and I’m so moved that I’m having a hard time processing the rest of my thoughts.” It was a long wait to get that line—and then we were all, “Whew!”

When you seek to represent someone else’s experience, I think all you feel after the initial excitement of finding a new voice, and thinking about how to do it—when you start making it, you just feel fear that you have screwed up and you’re doing something insulting. Honestly, I was so afraid of insulting people. To get that feedback was so heartening, it made me so happy. That’s my most important audience.

At that point, Renee was a white girl. because I thought, “Well, we have Marcus as an African-American child, so we should make her someone like me.” But one of [ASAN’s] big feedbacks was “We’re so excited that you’re using a female character, because girls have such low representation in autism on the screen, and are heavily not diagnosed—but look, doctors have reported that they’re far less likely to diagnose children of color with autism.

TPGA: Or if they do get diagnosed, it tends to be much later.

Milsom: When you listen to autistic people, you think about the behaviors that come with the idea of “having a meltdown.” At the moment I was making the film there had been a lot of children of color killed by police, and I thought it would be very powerful to bring a character in to the world who helps us understand each other better. If people could look at a child of color and think, “they might just have the same things going on as white children.” perhaps they would act with greater compassion and humanity.

But that was a wonderful piece of information for us to have, and a really easy switch to make, to go, “OK, we’re going to make her a young woman of color.” And then we found Madison, and they look almost exactly alike!

Loop actress Madison Bandy with director Erica Milsom
[image: Photo of Madison Bandy, a young woman of color with shoulder-length black hair,
standing with Erica Milsom, a white woman with glasses and a silvery-gray bob. 
Both are smiling. Madison is looking at the camera, and Erica is holding Madison's hand.]

TPGA: I can’t tell you how much that means, too, because if you’ve ever read the book NeuroTribes, one of the themes is the crucial role of storytelling, and seeing yourself represented—which is something Loop is doing. And also in understanding the experiences of people in your life that you’re struggling to understand otherwise. So after Rain Man came out, people could just say, “Oh, my kid’s autistic.” So my hope is that a movie like Loop shows parents in the BIPOC communities where there isn’t as much outreach and identification and diagnosis; that people will see Renee and think, “Oh, she’s like my cousin,” or “She’s like ME,” like the ASAN advisor said.

Even though there’s such a variety of autistic experiences and I know you had to winnow through them to come down to a single characteristic set for Renee, I really do think that the pure power of storytelling and representation that Loop represents is going to transform people’s lives. And you might never hear about it, but I think that is something that is not emphasized enough, and it would be so great to see more of it!

Milsom: Thank you. When I started making Loop, I had this idea that animation goes through a different “heart hole.” I know that sounds so silly, but I really do think when we see this beautiful, creative piece of art that people worked so hard to make, it lets you see a human being a little differently. It lets you have access to someone you might initially be afraid of, or feel awkward around. Because you know, differences can cause feelings of, “I don’t know what to do, I’m scared.”  So I felt that animation was a powerful place to put this story, because it disarms the viewer. And for kids, it just becomes one of the things that they see. It’s a normative thing, it’s just one of the shorts on Disney+: “Oh, ok, there we go, I like it” or “I don’t like it,” whatever.

It was also why, stylistically, we could make a lot of choices right at the beginning, about how we wanted to present things. There were a lot of options I was considering, and then myself and David Lally—who was one of the people running the [SparkShorts] program at the time, and he has a background in autism as well—we both thought, “You know what, we should use the Pixar house style. The style that expresses itself as, “This is a Pixar movie,” because that makes you understand that these kids are part of the Pixar story. It’s not 2D animation, even though all those things are part of the Pixar story too. If you look at the whole body of work, you want to feel like you fit into the picture of humanity that Pixar has always presented, and this is just another member of this world.

TPGA: Like it’s “Inside Out” adjacent. It could be happening in the same world.

Milsom: There are actually modified background characters from Toy Story 4. When they said, “who do you want,” Toy Story 4 was the most contemporary film, so they said, “Let’s go into the background characters there, if it’s two humans, and we’ll just choose them. Each of the characters was then lovingly “upgraded” by our production designer, Paul Abadilla, and the incredible Pixar Characters team of Technical directors. Now, there’s nothing background about them, except the size of their feet. they have very large feet, because those TS4 humans have very large feet. Fun fact!

TPGA: Thank you so much Erica, I enjoyed this conversation so much, and I’m grateful to you for making it happen. 

Milsom: Thank you!

Sunday, January 31, 2021

Hannah Gadsby's Douglas: What the Mainstream Media Doesn't Get About Autistic Representation

Sonia Boué
www.soniaboue.co.uk
twitter.com/soniaboue

[video description: Trailer for autistic comedian Hannah Gadsby's film Douglas.]

‘Mainstream’ media has not yet clocked the seismic cultural significance, for autistic audiences, of Hannah Gadsby’s newest show, Douglas. A lofty but quite oblivious New York Times review by Jason Zinoman misses the mark, because the reviewer seems to have no knowledge of autistic culture. Inkoo Kang of The Hollywood Reporter does better. Kang has been watching the conversation about neurodiversity online, and notes Douglas is a novelty for pop culture. 

Yes. It is novel, but it’s vital that we take this observation one step further: We need to consider the import of Douglas for autistic people, and what impact it might have towards much needed societal change and improving their lives. For this we need a more sophisticated analysis of Douglas as a cultural artefact, and a dissection of the failings of ‘mainstream’ critical reviews. 

The Guardian's Brian Douglas gives the film a worthy four stars, but fails to address it as an autistic cultural event. The NME review by El Hunt, makes mere mention of the show’s ‘big reveal’ that Gadsby is autistic, and finds Gadsby funny but frustrating:

“Hannah Gadsby is a white woman, and (you would assume) also a little richer thanks to Nanette. She does not examine this same privilege, nor the way that her work can sometimes hinge on reaffirming the existing beliefs of its core audience. Though she needles the patriarchy, and mentions marginalisation, they don’t get dissected in any meaningful way.”

I find this very telling. One mechanism of our oppression is that even when we do ‘come out,’ we remain invisible as marginalised people. Hunt ignores no fewer than two of Gadsby’s known marginal identities: She is both autistic and gay. Yet Hunt describes Gadsby as an articulate, wealthy, white woman, period. The bottom line is that we autistics don’t appear radical if others cannot "see" our autism. They don’t know what it takes to stand before them and translate ourselves for neuro-normative consumption. In calling-out Gadsby’s ‘lack of nuance,’ Hunt displays a considerable lack of nuance—if you happen to be autistic. 

I have experienced this particular oppression myself at first hand, as my being highly verbal often counts against me. This is a subtle yet toxic form of ableism: It’s almost as if the ability to explain autism disqualifies us from being autistic. 

If you’re not autistic you need to do the work to understand how radical, brave and important Douglas is for autistic people. To the mainstream critics I would say, the first step is human consideration. Secondly, think about how you would write your review about another marginal group. You might know about comedy and live performance, but how much do you know about us autistic people? Talk to the source, if you’re uncertain. What Brian Douglas observes, and what I observe is therefore very different:

“And Gadsby’s material on neurodiversity smoulders with fury at the doctors who dismissed her as “hormonal” and the perception of autism as the preserve of nerdy boys.”

Yes. Gadsby is on fire in Douglas, but we autistics all have cause to smoulder with fury. It’s the fact that Douglas is on Netflix streaming to global audiences, who embrace and identify with her (while she smoulders) that counts. Autistic culture is in the ascendance at grassroots level, and there are very many of us in all walks of life, many of whom still can’t ‘come out’ about their identities, for fear of the very real harms of stigma. This is why it’s so thrilling to see a show like Douglas break through. 

Generally speaking, it seems that mainstream critics can’t recognise our work as autistic culture, or are reluctant to write about it because they lack knowledge. Others simply practice ableism. This results in gross inequity overall, and creates a particular anomaly when autistics like Gadsby attain ‘mainstream’ recognition. 

I’m like Hannah Gadsby, who’s been talking about her autism diagnosis for some years; I see patterns and my thoughts run deeper than most. Douglas is about my kind of brain. Like Gadsby, I have spent a great deal of time trying to work out the ’purpose of my human’ (as she says in her TED talk), in a hostile and bewildering world. It is painful labour, but Gadsby has discovered that when you speak your truth you can (in receptive company) experience connection. 

The seeming inability of the ‘mainstream’ to properly review autistic culture is true across the arts, and a matter of deep frustration. Underpinning this critical vacuum is the "double empathy bind," a term coined by Dr Damian Milton, which refers to the emotional no-man’s land between autistic and non-autistic people. Historically this has fostered a seriously stigmatising and traumatic perception of autistic people, to the extent that, as we witness with Douglas, autistic culture is barely known about let alone critiqued adequately.

Thank goodness there is always at least one pattern breaker. Leah Greenblatt’s review in Entertainment Weekly is a laudable exception to the rule, in acknowledging autistic pain, and showing a rare flash of empathy for Gadsby’s labour. This is encouraging, in an otherwise disappointing landscape. The success of Douglas is undeniable and not at issue—critics are at liberty to either favour it or not—but generally what’s lacking in these reviews is both humanity and insight.  

Do the research, and you begin to see that this general lack of critical attention to Gadsby’s autism is remarkable. Let’s begin by reading about Douglas on her website, which states that the film is about "Letting the world see the view from Hannah's brain—one that sees the world differently but with breathtaking clarity." This is literally the primary message, but let me paraphrase it: "In this show I will show you my autistic brain." 

I’m astonished that the reviewers don’t get this message, and respond to it. Douglas is a groundbreaking show because it’s written and performed by an autistic person, and features an autistic person holding forth autistically. Compare this to Australian pop superstar Sia's 2020 directorial debut Music, an ill-judged film about a non-verbal autistic girl. The manifold harms of bogus cultural productions like Music render the complete authenticity of Douglas big news. Hannah Gadsby reveals and embodies autism on a mainstream global platform to worldwide acclaim, and is a singular, exemplum of an autistic person refusing to mask their identity to be accepted. Audiences are not repelled. Audiences love it. This is standup advocacy, which paves the way for other isolated autistics to "find the purpose of their human." 

Witnessing Douglas on Netflix was like the first snow, a thing of revolutionary beauty. The critical conversation needs to encompass the significance of Gadsby’s performance and her mission, within the context of the Neurodiversity Movement as a whole. I’m reminded of the author Katherine May, whose book Wintering's ascendance on the NYT List of Bestsellers has been equally thrilling. Mainstream audiences crave our hard-won autistic wisdoms, and respond to our original minds. We are groundbreakers, but doing that work takes courage, and the open-hearted encouragement of others (not ignorance and opprobrium). 

Douglas is Gadsby's difficult second album. It follows her smash hit Nannette, in which she broke comedy to both rebuild her art, and recover from trauma. The Guardian's Jenny Valentish says Nanette as not merely an hour of standup, but a "mass bloodletting." Douglas breaks with convention in a different way, by allowing audiences under the bonnet of Gadsby's brain. Referring to the prolonged introduction to the show, Jason Zinoman observes, "This is an old magician’s trick, telling the crowd what you are going to do, only to still startle them with it."

Okay, but Zinoman is missing the autism-specific subtext: As Gadsby explains, this is a show which rewards people who persevere. This sounds like an autistic burn to me, because autistics have to persevere in non-autistic spaces, or go under. For me Gadsby writes it large: It's your turn to listen. Gadsby knows what she’s doing in potentially alienating her audience this way—she’s demonstrating autism. 

I know non-autistics who didn’t have the bandwidth for Douglas, feeling that the introduction was too long and not funny. The ability to stick with Douglas could be the mark of a good ally, I say. As Gadsby herself says in her interview with Jenny Valentish, A joke is a wank, but a story is intimacy. Global audiences enjoy connection with Gadsby because she’s genuine, and her stories resonate deeply. A quick laugh is soon forgotten. 

In writing this piece, I’ve developed quite a grim obsession with Zinoman’s review, which presents a perfect example of the double empathy bind. He suggests Gadsby’s elaborate web of meta-commentary is spun for the sake of cleverness, which distances the viewer. This is lacking in sensitivity, given that Hannah is autistic. Zinoman unknowingly notices cultural difference, for which he lacks any awareness or curiosity. Yes. This meta-commentary is identifiably autistic. Gadsby signposts her meta-commentary, spelling out the word meta in the air with her finger to underline a pun, "I met a…meta…that’s a pun…this is a very pun heavy show." 

At which my brain goes, ping! Many of us autistics are known to revel in wordplay, and delicious tongue-rolling verbalisations, known as stims. For me, Gadsby both references and demonstrates this, in her segment about the quirks of American language, whereas Zinoman is dismissive, "There are riffs on language that you could have found on BuzzFeed years ago." This is quite the put-down, but the game isn’t to catch Gadsby out, it’s to catch up. In a previous segment she’s already laid the ground for what follows: "I’m not very observant." It doesn’t matter about your precious BuzzFeed. The sensory joy of my favourite stim is currently streaming on a global platform, yes please America, aru-gu-la!  Hannah Gadsby being autistic on Netflix is what counts. 

Autistic viewers will clue into further meta-references to our culture within the lengthy intro to the show. In her own words, Gadsby Hansel and Gretels the hell out of Douglas. She signposts literally every crumb of content, managing expectation, avoiding surprise, anticipating reactions, laying out her method. If you ever need to plan a birthday celebration for an autistic child or adult, these may be the strategies you need to employ. Information about autism in Douglas is both overt (loud noises can be difficult), and meta (many autistic people need the breadcrumb approach, and we often do better when every detail is explained ahead of time).

Indeed, the layers of autistic meta-reference in Douglas are breathtaking. Of course the intro is the show. It’s the show in ways non-autistic people think they know, but may never guess. We autistics need to tell you about our brains because they’re different, not because we’re trying to be smart. We understand how anxiety can be mitigated through detailed explanations. 

Yes, Gadsby’s audiences are global, but in Douglas, I feel, we witness her break through for autistic people. Though intersectional in spirit, her targets aside from white patriarchy are autism specific. While grabbing the patriarchy by a ‘Karen’s handful,’ she exacts delicious revenge on anti-vax groups, and neutralises narratives about (but without) autistic people, with a hilarious dog in the daytime story. You will never again be able to unzip an extending suitcase, without thinking about a lesser known part of the female anatomy called the Pouch of Douglas!

What first brought Douglas to my attention was Gadsby's recent tweet acknowledging the scarcity of self-authored autistic storytelling, thus indicating that the narrative about us remains hotly contested. As I write (in late January, 2021), adult autistics are still subject to hate by the autism cure lobby and others. Hannah performs eating the haters for breakfast, nom, nom, nom. This is cathartic and joyful. It is also signifiant, I feel, that she employs the #ActuallyAutistic hashtag for her tweet. Douglas is self-advocacy, and we’re so done with the harms of misrepresentation. 

We must see Douglas for what it is: Gadsby is enjoying global success, but Douglas is significant emotional labour, which is subject to critique as art. For late-diagnosed autistic people there is always a calculation to be made in terms of self-exposure, because it can so easily elicit misunderstanding and ableism. We must turn to the New York Times's Zinoman, one last time, to find an example. 

"When she performed this show in New York last year, Gadsby, in a discussion of her autism, built to a story about a girlfriend who insulted her with a slur. This made the audience gasp but also threw the show off balance. She cut it for Netflix. It was a smart edit — that story felt like a strained and doomed attempt to capture the gut-punch emotional climax of “Nanette” — and the omission suits the prickly puppet-master vibe of this new effort."

I beg your pardon, sir? Crossing irrational social lines to public humiliation and opprobrium is our reality. We were born on the "wrong end of the stick" socially speaking, and have historically lived our lives as outcasts. This is what we seek to change when we risk "coming out." Too long have we been silenced and rendered invisible, so please don’t deny our history in this careless, and ignorantly, knowing way. We are tyrannised by unspoken normative social rules, and it cannot be assumed what lies behind a decision to cut material for Netflix. As Valentish writes, "The burden of talking about complex issues usually comes down to the most marginalised people." I say, sometimes it’s just too much. I’ve been there. 

I can’t end this piece without sharing my best Douglas moment. Gadsby delighted me with a hilarious art history illustration of never "getting the memo" as a defining autistic experience. This is genius because it works in reverse. Get the memo. Douglas is deep autistic advocacy and a work of the soul. 

There is still so much work to be done, and further questions to be asked, about the unpreparedness of mainstream critique to open its eyes to our distinct autistic cultural being. We need to establish neurodivergance as an aesthetic, an idea in its infancy, it would seem. Historically speaking, we’ve lacked ability to flourish and identify a culture, due to violent suppression (Applied Behavioural Analysis), and misidentification. Too many stereotypes about us persist. Stereotypes through which, Gadsby in her brilliance, is hampered in translating autism for the non-autistic public. 

I do hope I am wrong. The importance of Gadsby's work for autistic people in witnessing embodied representation, at a global level, is immeasurable and a thing of utter joy. What my survey of reviews suggests however, is that even when we talk in great detail about our autism, we are still not heard.

Let that sink in, as I gently place my mic on the floor.

Wednesday, January 20, 2021

A Letter to President Biden on Disability Policy


We initially published this letter in June 2020, while President Biden was campaigning for the office he now holds. On this joyous inauguration day, we're republishing it with renewed enthusiasm and hope for how the Biden Administration can best serve its autistic and disabled constituents.


January 20, 2021

Dear President Biden,

We would like to reaffirm our June 17, 2020 letter to your campaign:

Your campaign’s new disability policy makes us hopeful about the future for our autistic children with high-support needs. Thank you for taking the Americans With Disabilities Act (ADA), disability rights, inclusion, and quality of life issues seriously, and also for addressing how the COVID-19 pandemic impacts the disability community.

Many of our children are already adults, and many require full-time supports, which means we share your campaign’s concerns. We also want to emphasize areas in which the campaign can deepen and reaffirm its commitment to disabled people of all ages, and do the most good:

1.    Ensuring Community Living and Self-Determination For All

The COVID-19 pandemic, with its increased mortality rate for group home, state operated developmental centers, and intermediate care facility residents with intellectual and developmental disabilities including autism, is underscoring the very real dangers our children and their community members face when they are placed in congregate housing settings with insufficient supports and underpaid staff. We appreciate that your platform is dedicated to Long Term Services and Supports and Money Follows the Person.

However, as many of our children will always need 1:1, 24/7 supports, and these supports are often only offered in congregate settings—which tend to sacrifice our children’s rights to privacy and autonomy—we want to reiterate the necessity of your campaign’s dedication to the spirit of Olmstead. We are very concerned that a few vocal parent-led groups seek to use HCBS funds for housing arrangements that are nominally community-based or “intentional,” but functionally institutional. We appreciate your campaign’s clear dedication to Olmstead and ask that you prioritize ensuring that people with the most significant disabilities have equal access to truly integrated community housing with robust services, rather than the limited, largely congregate options they typically have now.

We would urge the Biden campaign to dedicate significant resources to ensure supported decision making options are a viable alternative to guardianship for everyone. By supporting our children’s autonomy—however that looks for each individual—paired with your commitment to using Home and Community Based Services (HCBS) options for quality housing supports in the truly most integrated settings, you can help our children with high support needs not only lead happier and more fulfilled lives—whether they live with us, with roommates, or independently—but keep them alive. And the best way to do this is by consulting disability and policy experts who either have or are informed by those with lived experience.

2.    Better Autism Diagnostic Tools

Research has consistently demonstrated that autistic people have always been part of our families and communities, and that if anything are under-diagnosed. We need more and better diagnostic supports and tools, with effective reach into families of color, with lower incomes, and that consider the variety of autistic presentations if we are to effectively address this matter. This will not only provide an underpinning for improved quality of life, but will feed directly into your campaign’s goal of addressing racial inequalities in special education.

3.    Disability Inclusion on Disability Policy

We are heartened by your commitment to creating a senior position in the White House dedicated to disability community engagement and policy coordination, and to recruiting people with disabilities in general.

Thinking Person’s Guide to Autism is fully committed to autistic and disabled inclusion: Some of us are disabled, and some are not, but we have all learned from disability wisdom and advocacy about how to help our children live the kinds of joyful lives they deserve, and secure the rights they need—and appreciate that you understand and will aggressively pursue a similar path to best policy practices.

As one of us recently wrote in the Washington Post, “Having a disabled child is not particularly rare,” and it is reassuring to see the Biden campaign clearly shares those values, and that your disability plan was developed in consultation with disabled leaders. We encourage you to keep listening to a diverse group of disabled experts. This is how effective disability policy is made.

 

Thank you,

Shannon Des Roches Rosa, Carol Greenburg, and Jennifer Byde Myers
Editors, Thinking Person’s Guide to Autism


THINKING PERSON’S GUIDE TO AUTISM

WWW.THINKINGAUTISMGUIDE.COM

EDITORIAL@THINKINGAUTISM.COM

Saturday, January 16, 2021

Notes From Your Friendly Neighborhood Inclusionista

Shannon Des Roches Rosa
twitter.com/shannonrosa

I want to make this as friendly as possible, so I think it's important to start by clarifying terms: Inclusion, my lovelies, is a real and basic human right, and it simply means autistic and other disabled people have the right to be out and about in the world, and not segregated or hidden away as used to be the default for their community members. Inclusion does not mean forcing people like my high-support autistic son to be in places they don't want to be, that aren't set up for them, or in which they aren't welcome.

But even when we embrace inclusion as a disability rights baseline, my son still doesn't get to do all the things—but that's because of accessibility barriers, not because inclusion itself is a flawed concept. Even though The Americans with Disabilities Act (ADA) installed accessibility as the law of our land in 1990, in practice enforcement is slippery (and imperiled, call your members of Congress), as wheelchair user Robyn Powell observes:
"Of course, passage of the ADA did not make ramps and elevators magically appear; nor did it immediately halt discrimination against people with disabilities. Progress takes time."
 Accessibility law is not accessibility reality. Photo © Richard Downing
[Image: Two white women (one in a wheelchair, one sitting on the floor)
in front of a museum exhibit that says, "Despite the success of 504 and
the ADA, people with disabilities still do not enjoy full access
and inclusion in today's 
society." The wheelchair user is rolling her eyes
 and the other woman is 
making an over the the top expression
as if she's shocked by what the exhibit says.]

That gap between ADA law and universal implementation means people are right to be angry about how few places are truly accessible, as the situation really is completely f***ing frustrating and unfair. And so the battle must continue, on all accessibility fronts, so that my son and all autistic disabled people get to have All The Opportunities they deserve.

But just because something has been deemed "accessible" by ADA standards doesn't meant it actually is. That has to do with another aspect of accessibility: accommodations. Take autism conferences: they should be autism-friendly environments, but few actually commit to the accommodations autistic people need, and which aren't always stipulated by the ADA. Some planners will make a token gesture, such as having a quiet room; but most sessions, panels, and posters occur in sensory-onslaught environments, and very few happen in a way that would engage, or be accessible to, a person like my son.

All these barriers to accessibility and accommodations mean it's not reasonable, at this time (and even when we're not staying home because of a pandemic), to expect my son to be able to go everywhere, even places that openly want to include him. Even though my son has so worked so hard on his coping skills and boundaries, I still wouldn't take him to places that I know are too taxing, like loud restaurants, crowded public festivals, or quiet concerts or ceremonies. Sometimes this means missing important family events. And while those situations can be bittersweet, they are also part of understanding what reasonable accommodations for him look like.

Not everybody understands my autistic son's reality, which means we are constantly having to educate the people in our lives, and hope they will at least try to understand that our openly, obviously disabled dude is usually doing the very best he can. We can help by sharing information such as why some autistic people can't wear face masks, why autistic meltdowns happen; why autistic "behaviors" usually have reasonable causes; why stimming can be joyful and therapeutic and not a behavior to suppress; why grabbing food is never OK, but sometimes impulse control is a thing despite knowing better—so our friends, family, and social media network will have realistic expectations about what he can and cannot tolerate. Inclusion isn't going to get any easier if we let society dictate that autistic people can only behave like non-autistic people.

The more we're out and about, the more we're visible and cheerfully unapologetic about it, the more we show the world what inclusion looks like on autistic terms, the more other people will get what inclusion actually means. This includes (for me, at least) minimal patience with people who are uncool about my son being in places he has every right to be, and when he is not violating anyone else's space nor causing a disturbance.

It's also OK, on tough days, to retreat inside a circle of comfort while we figure out how to do better next time. For me, these comfort circles mean hanging with people and going places that both want and understand how to accommodate my sno. These circles may not always be as big as I wish they were, but that's fine as long as they contain people who stick by us even when it's not easy. Who understand that my son is the greatest dude there ever was, and also that there are some scenarios that don't work for him. Like the small local grocery store with the cashier who has witnessed my son need to leave suddenly on more than one occasion, yet teases him about his teenage beard scruff; or the visiting friends who don't mind that my son considers their guest room bathroom his bathroom, and who understand that when we accompany them to local tourist destinations, my son and I might cleave off a little bit. Or a lot.

What helps me when I get frustrated about the smallness of my son's (pre-pandemic) circles is to remember that his generation has so many more inroads and opportunities than autistic people just one generation older: things like sensory friendly movie and theater showings, museum times, and adaptive surfing. These opportunities don't work for everyone, and some of them are kind of the opposite of inclusion, but they exist, and at the very least they let my dude and his community members get used to those spaces and activities, and possibly lay the foundation for going to those places more spontaneously.

Boogie boarding with a A Walk on Water
[image: my son, a white teen dude wearing a wetsuit, on a blue boogie board
in the ocean, with the support of a Latino man in a wetsuit too.]

Some parents say they dream of things like an "autism island" where everyone gets their kids, and nothing has to be explained. While I get that impulse, parents choosing to segregate their disabled children in "intentional communities" is ethically thorny territory. I also get why some parents are conflicted, confused, or fed up about 'inclusion,' as some autism parenting spaces are hostile to that term's use as a disability rights-specific adjective, as in (truly) inclusive communities, and inclusive education. This is why, as always, it's important to look to autistic and disabled adults with lived experience about what best inclusion practices look like. Parents who come from outside the disability community are too often not the experts or role models our children need.

I call myself an 'inclusionista' because I want my son to be included, and also because that continues to be a somewhat radical stance. For his inclusive reality to happen, we need to think about inclusion the same way we think about feminism, or fighting racism: as centering basic human rights, and as the default right thing to do.

Thursday, January 14, 2021

Renee's Ringtone: Celebrating PIXAR's Loop

The logo for PIXAR's animated short film Loop.  The word "loop" is written in rainbow-gradient lowercase script, on a white background.
[Image: The logo for PIXAR's animated short film Loop. The word "loop" is
written in rainbow-gradient lowercase script, on a white background.]

Content note: Flashing graphic below

Almost exactly one year ago, PIXAR released the short film Loop as part of its SPARKSHORTS program. In Loop, Renee and Marcus, "a non-verbal, autistic girl and a chatty boy are partnered on a canoeing trip. To complete their journey across an urban lake, they must both learn how the other experiences the world."

Still from PIXAR's animated film Loop. A Black teen boy and girl are seated in a red canoe together. The boy is holding a paddle.
Marcus and Renee
[Image: Still from PIXAR's animated film Loop. A Black teen boy and girl
are seated in a red canoe together. The boy is holding a paddle.]

Renee is PIXAR's first-ever autistic character, and is voiced by autistic actress Madison Bandy. Loop was also developed in close consultation with the Autistic Self Advocacy Network, which provided "feedback on what to them was feeling real, what felt funny and sad and how we might help our character Renee be true and honest and have real reactions."

Still from PIXAR's animated film Loop. Renee, a Black girl with a  medium-long cloud of black hair, leans from a red canoe  and feels lakeside reeds with her outstretched arms.
Renee enjoying the sensory experience of the reeds
[Image: Still from PIXAR's animated film Loop. Renee, a Black girl 
with a medium-long cloud of black hair, leans from a red canoe
and feels lakeside reeds with her outstretched arms.]

Loop's director Erica Milsom says the film "demonstrates the idea that any moment of stress or misunderstanding will pass, and staying open to the moment and relaxing helps everyone. In 'Loop,' Marcus doesn’t know what’s happening, but in just giving Renee her space, he finds a way to the other side. From Renee’s perspective, it’s about understanding that someone can give you space and will see your point of view."

Marcus, watching Renee
[image: Still from PIXAR's animated film Loop. Renee, a Black girl with a 

medium-long cloud of black hair, leans from a red canoe 
and feels lakeside reeds with her outstretched arms.

Renee's phone is incredibly important to her, and helps her stay centered. Her phone also has a unique ringtone that anchors the film's soundscape. And now Director Milsom and PIXAR have made Renee's ringtone available to you. We are grateful for their generosity, hope you enjoy using the ringtone, and encourage you to spread the word about where Renee's Ringtone can be found.  

Animated GIF of a pulsing ring of colorful circles on a black background.
Download Renee's Ringtone in WAV or MP3 format
[image: Animated GIF of a pulsing ring
of colorful circles on a black background.]

We hope you enjoy having Renee's ringtone on your own phone. Here's how to make Renee's Ringtone your own ringtone. If you find other useful instructions, let us know.

PIXAR'S SPARKSHORT LOOP is now streaming on Disney+. 

Tuesday, January 5, 2021

Teach Social Skills As Values, Not Like Computer Programs

Sibling Love
Photo © 2C2K Photography | Flickr / Creative Commons
[image: Black-and-white photo of two young embracing Black children, one with
a shaved head, light button up shirt, and dark pants, the other with a 
white horizontal-striped tank dress and long box braids.]

Finn Gardiner
expectedly.org

Applied Behavioral Analysis’s simplistic definition of social skills does both autistic people and the general public a disservice. Applied Behavioral Analysis (ABA) taught me that social skills were context-free rules I had to follow: forcing my hands to be quiet, staring back at eyeballs that bored into mine, contorting myself to make myself look less autistic at the expense of my happiness and overall well-being. I wasn’t allowed to be who I was, so I didn’t see the benefit in making a good impression on other people. 

I easily understood abstract concepts such as justice and equality as a child, but I didn’t understand social skills in the more conventional sense until my early adolescence. Had I been given a coherent narrative about the importance of social skills, I might have developed them more readily; as it was, my lessons seemed arbitrary and useless. It was assumed that I was constitutionally unable to understand context, and the only way to teach me appropriately was to treat me as a flesh-and-blood robot, superficially carrying out instructions I was not expected to comprehend. 

For ABA practitioners, social skills are analogous to computer programs: we are merely to carry out the tasks without protest, and the execution of the program is what counts, not the values that make those programs necessary. All of us, autistic and non-autistic alike, must learn how to hone our social judgment through instruction and experience. Autistic people may need more guidance in interpreting social interactions than non-autistic people, but it is not impossible for us. 

The written word has taught me more about social skills than all the quiet-hands admonitions I endured as a child. I was an early and enthusiastic reader, devouring every book, magazine, and newspaper I could get my hands on. Through my reading, I was exposed to the deeper aspects of social interaction: compassion, curiosity, self-awareness, thoughtfulness, consideration, generosity, fairness, equity. I could see others’ humanity even when my caregivers neglected to see mine. 

When I learned how to write, I learned why social skills—in the broader sense, not in the paint-by-numbers ABA sense—mattered. After all, good writers must understand other people to be effective. This attention to written language allowed me to read social cues far more easily on the internet than I could in person, too. Online, I noticed people’s word choice, their attention to spelling and grammar, their punctuation, the speed of their responses. Were they more punctilious, using standard capitalization and ending every sentence with a period, or did they break the laws of English with a cheerful insouciance? As my ability to understand social cues improved online, my offline social abilities improved in turn. I discovered that revision, too, is a social skill: shaping prose, correcting errors, turning jargon and cant into understandable English, trimming sentences—all these are in service to the reader. 

Changing "people with autism" and "people with mental deficiencies" to "autistic people" and "people with intellectual disabilities" shows respect for the people that the terms describe. Even the little things count: wrapping periods and commas inside the maternal embrace of quotation marks, spelling 'all right' as two words, turning the ungainly 'impactful' into 'influential,' appreciating the difference between the essential 'that' and the incidental 'which'—remove distractions and allow readers to focus on the meaning of what you’ve written, not your spelling or punctuation. Readers may not notice all these small decisions, but they’ll see the result: clear, understandable writing without distracting errors or noninclusive language. Good usage is invisible; mistakes stand out and distract the reader. Although some may claim that style and word choice are secondary to the message, people will judge form as well as function. 

Through reading and writing—through my loud hands flipping through pages or typing on a keyboard—I learned how to coexist with my peers, not merely to be indistinguishable from them.