Saturday, February 27, 2021

The Joy and Vibrance of Autism

Emily
@ItsEmilyKaty
www.authenticallyemily.uk

[image: The author, a white woman with light brown hair
in two French braids, smiling and sitting in a field of lavender.]
The vibrance and joy of autism is often overlooked amongst the trouble that it can cause. The hard parts do make my life hard, but people forget that the good parts are what makes my life really good.

I see the world in all its vibrance. I am uplifted at once by the sound of birds. The feeling of the sun on my skin makes me feel so warm. I'm sure I see more shades of green than other people. I notice those small details that others don't. My eyes are constantly searching.

Honesty comes so naturally to me, and I like that (most of the time). It makes me feel more genuine. It means my relationships are so much stronger and purer. It means that I'm not hiding things which build up inside of me. It means that I make other people laugh.

I like my autistic sense of humour. A lot of people think that autistic people can't be funny. But apparently, I am hilarious. I get to see the biggest smiles lighten up the faces of people I love and know that it's because of me. I like that feeling.

I love how I feel when I get excited about something. My whole body is consumed by joy. It moves in ways that other people's bodies don't move when they're excited. My brain is transfixed. I forget about everything else and I'm transported into my own world. It feels magical.

Small things in life make me so happy. It's a childlike excitement that I often feel embarrassed about. But think of a child overjoyed at seeing a penguin at the zoo. I am like them at the smallest thing. I think this makes me more grateful for things.

I feel things so intensely, and when that's a good emotion, it's the best thing in the world. I feel joy with every bone in my body. When someone else is happy, I feel it too. When I'm happy, I can do anything. I feel like I'm on top of the world.

I feel empathy so strongly that I feel like I'm experiencing the person's emotion myself. I know I'm a better person because of this. It hurts me, because if I let myself, I can physically feel their pain. But it makes me a better friend, a better daughter, a better person.

The word passion describes quite a lot of my life. It drives the direction of my life every day. My brain latches onto an idea, and that's it. I have to do whatever is on my heart, and I can't leave it half finished. I have to achieve whatever I set my mind to.

I can hyper-fixate on things that I'm interested in. I wrote a 100,000 word novel in five days. I guess this means I have good concentration, but it's only when I'm consumed by something. I do things properly too, none of this doing things half-heartedly.

I have such a strong sense of justice. I cannot remain silent when I think that something is unfair. I always do my best to fight for whatever I believe is right. I stick to my morals and hope that I can make the world a bit of a better place this way.

I know what it's like for other people to judge me. I know what it's like to feel left out. I think that because I know this, I don't judge other people. I always include people. I want to make sure people aren't sad if I can. I want to make people feel good about themselves.

Social expectations go right over my head. At times I agonise over them because I don't understand them and want to blend in. But at other times, I don't care what people think. I do things because I want to do them. I think my actions are more genuine that way.

So, while autism can make my life harder in many ways, I never want people to forget its vibrance and the joy that it brings to my life, and the lives of those who love me. 

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!