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Diane J. Wright is an autistic and ADHD Canadian-American and Afro-Caribbean author, filmmaker, and disability justice advocate. Diane generously shared her time with us, in recounting her personal autistic journey, her founding of Autastic.com—a resource and community hub for thousands of autistic adults, including spaces specifically for autistic people of color—and her successes in shaping how stories of autistic PoC are told in popular media. 

Thinking Person’s Guide to Autism’s Shannon Rosa: Diane, I want to thank you for talking with us today, and I was wondering—to get right into it—can you tell us about how you realized you were autistic, what that journey was like, and specifically why you think it took so long to get your diagnosis?

Diane Wright: The story refines over time as I gain new knowledge. Every time I look back, I see it differently. I was in my early 40s and at the end of my rope, to be honest. I had reinvented myself so many times. I’d carved out so many careers and on paper, I was a rock star. I thought that I’d done everything by the book—my work was praised, and I’d hit the expected social markers, my partnership was loving and equal—but I didn’t have friends. I couldn’t keep a job. I just wasn’t meeting those expectations that people either explicitly or don’t explicitly say,  which is, “By 40, you’re supposed to be ‘here.’”

I was done. I was out of ideas to recreate myself, and didn’t understand why things didn’t add up when I was bone-deep exhausted. I was so miserable, beyond miserable. It was despair.

Rosa: I’m so sorry. It’s not uncommon at all, it’s a very common experience, but everybody seems to experience it in isolation, which is why I’m hoping that your talking about it will help people.

Wright: Yes, and I guess that’s why I’m a little bit casual talking about it, because I hear it every day from somebody. It is horrible. It is wrong.

I didn’t want to die, so I dredged up the strength—what little I had—one more time, and I started researching, because that’s what my brain does. I was looking at trauma and mood disorders and all the explanations that the world gives us, and … nothing. A lot of things fit a little bit but not enough.

Then I read this article by Louise Kidney, a recently diagnosed woman​​. At the time, people were just starting to talk about being what was still called “late-diagnosed.” It was all new and exciting. People were publishing their personal stories, so I was able to read about this woman across the planet whose inside experiences mirrored mine. I’d never had that. Ever. She had nothing else in common with me that I could tell. And yet, if she was autistic, then maybe I was too?

I’m 100% skeptical by nature but it turned out to be true—for me—that when you recognize yourself in someone else, especially after a lifetime of not having that experience, you do just know. Deeply. Not to say all doubt was erased. I still doubted that I was autistic for years after that, as many of us do. That’s systemic ableism doing its work right there. It was odd, stumbling across my own truth like that, after all the effort I’d put in up to that point. My pattern-seeking brain wouldn’t let it go. And I figured it out from there.

I knew nothing about autism at all—I’d had zero information going in—but that word brought me information and it brought me self-knowledge. And most important, it brought me people. That community saved my life when I found it, eventually.

Rosa: I’m so glad to hear that. Do you have any insights into why it took so long to get your diagnosis?

Wright: The same insights then as now, that people often don’t see beyond children and others—especially people of color—who don’t fit the outdated, disproven stereotype. It’s changing very slowly.

As our voices become more widespread in public discourse, that changes people’s awareness, and that changes public policy, and that changes how clinicians are trained, and how parents accept and support the next generations. Ultimately, it’s parents and teachers and people seeing young children, not thinking them odd, and just understanding who they are that will change the world for the better. Still, for me, that wasn’t a thing.

When autism first came into my awareness, I did what many people do and went to a doctor, looking for insight and guidance. I went back to a therapist that I’d seen for a long time, someone I valued and trusted. That person said that I make eye contact and that “they know autism when they see it” and I “didn’t strike them as that.”

Rosa: I’m just going to laugh a little bit here. Okay.

Wright: Yes. Also not uncommon. That put me off better understanding myself for two years, because I thought, “Okay, I’m going to go look for what it must be then.” I just kept circling back to autism because nothing else fit so completely. A lot of us just know. Not everybody, but a lot of us—when you see your autistic traits more clearly and when you meet someone who mirrors you in those ways, it’s like, “Oh, okay.”

Rosa: Yes. It is really infuriating, as a bit of a sidetrack, that not just that it takes so long and that experts dismiss it, the autism self-identification so much, but that research shows that self-identification is far more accurate than not. People who self-identify as autistic are mostly correct.

Wright: Let’s not forget, that’s where most of us start, because you need to wonder before you go get confirmed, if you choose to do that.

Rosa: Yes. So, the community you founded, Autastic, brings together thousands of late-identified autistic adults like yourself. It also features groups exclusively for autistic people of color. How did those groups come about?

Wright: How exciting is that? From utter despair and isolation to thousands of reflected voices? Like I said, community changed everything for me.

First, when I coined the term “late-identified” way back when, it was to subvert that whole “late-diagnosed” thing and to be inclusive of the majority of us who don’t have access to diagnosis, who choose not to have it for safety reasons, or for any of the other valid reasons people remain self-identified. Right?

I’ve since shifted to using “adult-identified” because I would like us to be more clear that our experiences can have different shapes than, say, someone who was diagnosed as a child or teen who may gain access to support, social inclusion, and increased self-acceptance. I’m by no means saying acceptance is a given for anyone. I’m saying that groups of people within the larger autistic community have different shared experiences and it’s important and valid that everyone have access to being mirrored.

Most every autistic experience is shaped by ableism because that’s the world we live in right now. The social realities of those of us who identified in adulthood are often overlooked, making it harder to address the barriers we face. Since we as a community changed from “late-diagnosed” to “late-identified,” I’m hoping we can now change to “adult-identified.” Language is a living reflection of experience, right?

Rosa: That’s an important foundation to set.

Wright: It is.

How I got into all of this: When George Floyd was murdered in 2020, that pushed Alicia Garza’s, Patrisse Cullors’, and Ayo Tometi’s Black Lives Matter movement into conversations that some folks couldn’t ignore anymore. [At that time,] I had not yet added my name or face to Autastic. It took me a good couple of years to decide to be me openly. Safety was a huge consideration.

I first started a Facebook group, just to see if I could find anybody who was like me because I couldn’t find other people anywhere else at that point—I found a few. I shouldn’t say I couldn’t find any. I did join some groups and they were mostly dudes, and they were mostly people yelling about things, as Facebook tends to be.

I started the Surprise! You’re Autistic! Facebook group—it had a different name at that time. Presuming that space to be owned by whiteness, as is the default, members really came after me with that newfound righteousness that people had during that period. That changed the dynamic. I watched our members of color be overtalked and they stopped participating. They lost community. Then I was attacked to the extent that people went out and formed independent groups to come and yell at me.

Rosa: I am so sorry.

Wright: Thank you. That period nearly broke me, and I almost quit because my partner was like, “What are you doing? This is horrible.” I’ve written about this on Medium, for anyone who cares to dig into that.

It also fueled me to create spaces where people of color could just share our experiences as multiply marginalized people just trying to live inside all these systems that make it really incredibly difficult to do so, and with nearly non-existent recognition or support.

Rosa: It’s a complicated history, right? I’m so glad that those spaces exist now, like you said, for people like yourself who didn’t have a place—inasmuch as the internet can be safe—that felt safe to them.

Wright: Let me be clear, just opening the door isn’t the end of it. Our spaces that I reserved are still so much less active and more quiet than any of the white-dominated spaces, I think because we’re used to it not being safe, even if it is our space. We’re used to not speaking up and being able to share our experience and find mirroring because it hasn’t been safe. Opening the door is one thing, but there’s a lifetime of prejudice and pain that shapes how we show up in the world.

Rosa: Yes. I’m sorry. I don’t have any words for that. It’s just not how things should be.

Wright: No, it’s not.

Rosa: There are specific aspects to being autistic and Black that are not always recognized by mainstream coverage. Can you talk about some of the ways in which those aspects get misinterpreted or explained away, and how that causes harm?

Wright: Yes. I hesitate because when we do get to speak about our experience, it usually is in the frame of, “How are you different from everyone else?” We rarely get to talk about just being us. I will say it’s complicated, because for Black families, any stigmatized label can be about safety or the lack of it.
We know how easily Black children and adults are criminalized for behaviors that don’t fit the norm. We know that lives have been lost because– I can’t.
Wright: Normally I name names and I do the thing, but…

Rosa: No, you don’t have to. We know the tragedies of people like Elijah McLean and we know what happens and we can link to them. You don’t have to talk about it.

Wright: Sometimes I just can’t.

Rosa: No, you shouldn’t have to. It should be common knowledge.

Wright: It should. In Autastic spaces, I don’t try to push people past the fear. I don’t try to placate it away. I validate it because it’s rooted in lived experience and in history. It’s real.

I also remind folks that not knowing who they are, and not having language for their needs, doesn’t shelter us either. Yes, autism is a stigmatized label, but we can’t pretend it’s not there, because the harm is great when you don’t know who you are.

Rosa: Yes. That actually leads into the next question, which says that the Black community, as you’ve mentioned before, can really struggle with labels and stigma.

In your communities, how do you help people work through these fears about they or their loved ones being labeled, or is that something that the community is able to do through mutual support?

Wright: Like I said, we don’t really work through the fear because the harm is real.

Rosa: Yes. I guess work with, work despite.

Wright: Yes, in the same ways as marginalized communities have always survived prejudice, we name the water we’re swimming in, we get clear on our actual needs, we reject the idea that others get to define our worth. It’s not about overcoming, or fighting against even, it’s about reclaiming our right to exist, our birthright to exist as we are, and building spaces that don’t limit our humanity, or our potential, or our future, or any of it. We just try to exist, but like I said, sometimes opening the door isn’t enough.

Rosa: Yes. I can tell that talking about this is hard for you, and I appreciate you being here.

Wright: It is hard.

Rosa: I just want to reassure you that hearing your words is going to help a lot of people. I appreciate you sticking with me.

Wright: I just want to back up because I wanted to mention that everything I do is through an Afrocentric lens. I think it’s important people understand that while Autastic centers autistic people of color, members who, like me, are of the African diaspora, are its heart. I’ve tried to create the spaces I couldn’t find, the belonging that is so hard to come by out there, if not for purely selfish reasons.

I do all I can to secure funding for programs just for us, to uplift our voices, to foster mutual aid. We have conversations and events and growth experiences exclusively for autistic people of color, we have reserved spaces around shared heritage and other identity and affinity groups, including a Black Members’ Circle. On social media, I try to connect us with Kerima Çevik’s hashtag #AutisticWhileBlack.

I just want people to know that there are places for you, however you identify in your intersectionalities. I’ve tried to make a place where we can find each other. I hope that’s clear.

Rosa: I think that’s important for people to know, that if they don’t just check a couple of boxes and they don’t feel like they belong that, yes, they actually do.

Wright: Yes. Even within our own larger communities, there is stigma and policing and other things.

Rosa: I can imagine. This next one is long, and I can break it up. I wanted to ask you about masking, which is concealing autistic traits to fit in. It’s something that many autistics do to get by, though, obviously not all autistic people mask.

There has been a campaign lately for people who are saying that autistics need to “take off the mask” and be their authentic autistic selves, not just as a human rights issue, but because masking can be exhausting. The research shows that there’s a lot of negative effects in mental health, and even suicidality from prolonged masking.

At the same time, autistic people of color have pointed out that the risks are higher for them if they don’t mask. Is this something you talk about in your communities or do you have experience with this or?

Wright: Of course. Masking is about survival. For historically racialized people, the world reads our traits through a lens shaped by racism and ableism together. It’s both.

I won’t get into the colonization conversation. I’ll just say that many of us adapt to lessen the harm. We learn to minimize ourselves, to code switch, to manage perceptions, to constantly monitor ourselves. At some level, masking echoes a long history of passing, of reshaping ourselves, whether by conscious choice or conditioned survival, to avoid becoming a target.

It’s not always choice. When people say, “Take off the mask,” it overlooks that for some of us dropping it means exposing ourselves to even more risk than we already carry just by living inside our skin. Life’s already difficult, so being fully ourselves can carry real consequences. What I say in our communities and in my work is that the goal isn’t to unmask everywhere all the time. It’s building a self-understanding that creates real choice.

Rosa: That makes sense. I think it’s important for people to understand the reasons why taking off the mask isn’t the same for everybody.

Wright: It’s a valid and perfectly wonderful ideal that we all get to exist as we are, but I also encourage people to think back to the history of pathologizing homosexuality. Queer people couldn’t just take off the mask because there were consequences. Even now that we’ve come such a long way, people are still in the closet for safety, depending on their situations.

The complexity with that analogy, because I make it often, is that homophobia is often openly based in religion and ideals, whereas ableism is based in altruism and things that aren’t openly seen as bad. It’s much more insidious.

Rosa: Yes, they’re not equivalent. Any prejudice is bad. It makes me angry.

Wright: Yes, that’s good.

Rosa: On to less intense things. You have also talked about how important it is to emphasize autistic joy in its unique forms. How does autistic joy feel for you? What are some of your favorite examples that you’ve experienced or seen? This is something that people don’t talk about enough, in my opinion.

Wright: I love to talk about it. I’m very careful not to fall into the toxic positivity trap, because autistic joy, if you keep that in your forefront, it’s a great North Star.

A lot of the things that make our lives better will bring joy. For me, it’s been a long road to learning what my joy looks like—really long. I set myself on a full expedition, because when you’re an adult-identified autistic person, your true self can be buried very far down. The decades you’ve lived masked can mean it’s difficult to find what really brings you meaningful joy. Those things can be obscured by survival.

I learned that I need to be regulated before I’m even open to fully experiencing joy—that regulation is important. Challenging, but important. For me, I have my go-tos in my self-care kit. I love walking, any sort of rhythmic movement is regulating for me. Nature is calming. I blow bubbles in the sunshine. Baking is great because there are instructions and it’s usually a good outcome. The risks are low. But when I need lower-output joy—because those are high-output things—I’ll get on the floor under my blanket—fuzzy, weighted, whatever the day requires—put on an audio book, get the cat under there, and then just exist.

Rosa: Oh yes. Cat is crucial.

Wright: Just exist. No demands, nothing. That’s bliss.

Rosa: Lovely.

Wright: Could I say one more thing about joy, so people can figure out their own? More than what brings me joy personally, I love when people express how they experience their joy. If you want to see someone light up, ask them how they love spending their time. Some people in the community love big motion, like swings in a park or skateboarding. Some people love to find their happy place with loud music. There’s visual—like sparkling, colorful, delightful things—animals, love of language, swimming, knitting. Some people love mechanical keyboard clicks, aromatherapy, teas. All this is what I’m getting to. There are as many joys as there are us.

Rosa: One of your many hats is as a media consultant, specifically in promoting more Black and neurodivergent characters and themes. I would love to hear about some of your successes.

Wright: I have two projects I’m pretty happy about. I think there’s always further to go, but hopefully I helped push us forward a tiny bit. A couple of years ago, I arranged for the showrunner and writer’s room of Disney’s animated and iconic The Proud Family series to hear from Black autistic parents of Black autistic children as they wrote the episode where the character BeBe, a young Black child, is diagnosed autistic.

Instead of relying on outside observations of autistic life, as is what often happens, I created a panel of people who were children and who have children to drop all that rich embodied wisdom directly to the creative team. I still think that’s the only time that’s ever been done. And it shouldn’t be. We shared real lived experience of what it’s like to be Black and autistic from both the parent and child’s perspectives, to shape that episode.

Rosa: That was you? Awesome.

Wright: It was me and six panelists who are also Autastic community members. Disney invited me back to host a second panel with the series executive producers and creator, as well as the voice of Dr. Lord and co-founder of The HollyRod Foundation, Holly Robinson Peete.

Rosa: That’s fantastic.

Wright: It was a good experience all around. The character BeBe was voiced by Aiden Dodson, who is a young autistic actor—Aiden was also part of the panel. Production on The Proud Family wasn’t just superficial. It was intentional, it was nuanced, and that was really rare. It wasn’t perfect but it was a lot better than it could have been without meaningful autistic inclusion.

Rosa: It was lovely. The internet was ecstatic about that episode. Thank you. Thank you for making that happen.

Wright: It was so good to see that! The other show was an HBO Max documentary called Santa Camp from a couple of years ago. It’s such a great film, you should watch it.

Rosa: I will!

Wright: Santa Finn is a non-speaking autistic adult who wanted to go to Santa camp. When I first saw the footage, the perspective, as we so often see, did not center his agency the way it could have. With my feedback, the producers went and re-shot and re-edited, which was costly, and most wouldn’t do that. They did.

Rosa: Oh, that’s fantastic.

Wright: Now Finn’s point of view is shared directly by Finn. We get his experience more truthfully. It’s just so much better.

Rosa: That is rare. Usually the feedback is, “Yes, okay. Anyhow, we’re going to go with what we have.”

Wright: Mostly, yes. That’s often exactly how it goes. I have one coming up soon with the national public broadcaster in Canada. We’ll see how that one goes.

Rosa: Keep us updated, when you can talk about it. I would love to hear more. Just those two examples are so wonderful to hear about, because I’m a firm believer that every step counts, that every effort counts, and you never know how your efforts are going to affect other people. I can guarantee that—it sounds like you do know—but again, people love that episode of The Proud Family, and are so happy about it. Thank you. I can’t wait to watch Santa Camp.

Is there anything else you’d like to talk about that we haven’t covered here, about you and the work you do?

Wright: Ah, well, at the heart of everything I do, whether it’s consulting, or community building, or writing—I’m working on a manuscript now that we actually are going out this week to publishers with, so that’s scary—is that regulation is the foundation for real sustainable change for us.

We can’t access joy or self-understanding, or safety even, if our nervous system is in survival mode. This is about our neurodevelopmental selves. Neurology. It’s not just weird behavior and rigidity. It’s real. The way we experience the world is real and it’s much more demanding and detailed than people understand. We are often overtaxed.

For those of us, like me, who are also navigating racism, ableism, and multiple disabilities, the world is not designed for our sustained regulation. Basically, we’re always fighting. It doesn’t mean that we’re stuck, but we have to get creative. We have to find each other. We have to build scaffolds so that we can have places to breathe and have a way to exist as we are—for some portion of every day to just exist. I think that’s how we move forward. That’s what keeps me showing up. I have to do the work every day for myself, and it’s not easy, but it is so much better than when I started.

I’ve seen so many lives completely, like 180 degree-transformed because of [the Autastic] community. People usually arrive deep in burnout and despair and unable to just cope with anything. Over time, they show up for each other. It’s just the basic act of showing up and sharing our stories. It’s like magic when there’s evidence that you’re not The Only. People have found just happier relationships. They’ve found work that means something and that moves at their pace. They’re just different. I can’t express how phenomenal that is.

Rosa: That’s all because of you, which is wonderful.

Wright: It’s me and a really dedicated band of volunteers.

Rosa: Yes, but you as a catalyst.

Wright: I guess so. That’s weird, but yes.

Rosa: It can be hard to own what you do. But you’ve made the world a better place, and you should be proud of yourself.

Wright: Thanks. I’m trying.

• Source: Sophia’s Mission