Autism Interviews Mental Health Neurodiversity Podcasts

How Autistics Talk About Autism with Christine M. Condo

how autistics talk about autism with christine m condo

Christine M. Condo was diagnosed with Autism Spectrum Disorder in 2015 at the age of 42. Her diagnosis spawned a writing and advocacy career to increase awareness and acceptance of autism, particularly in women. Condo has been published in the Washington Post, Autism Parenting Magazine, and Oaracle, is published on Medium, and maintains a personal blog about her experiences.

Condo's writing focuses on dismantling common misconceptions about autism and supporting the burgeoning neurodiversity movement. Her ultimate goal is to lobby to amend the Americans With Disabilities Act to include specific accommodations for people with non-physical disabilities in accordance with their unique needs.

Condo has bachelor's degrees in both English Writing and Biological Sciences, and is currently pursuing a master's degree in Professional and Technical Writing at George Mason University. Her thesis project interviews autistic writers about their lived experiences ranging from childhood and autism diagnoses to professional careers and is entitled Becoming Authority: How Autistic Writers Use Rhetoric to Combat Stereotypes and Empower Autistic Narratives.”. In addition to writing and speaking, Condo also provides autism accommodations consulting for employers and educators of adults on the spectrum.

In today's interview, we're covering:

Contents show
  • how Christine found out she was autistic
  • how she entered the neurodiversity advocacy movement
  • what it's like to have a publication go viral
  • why learning about how autistics talk about ourselves is important to codify universal disability protections

🎧 Want to listen? This post is based off of Episode 57 of the Neurodiverging Podcast! Listen on Apple Podcasts Google Podcasts | Spotify | Youtube

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Show Notes:

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Transcript of Episode 57: How Autistics Talk About Autism with Christine M. Condo

SULLIVAN: Well, welcome to the podcast, Christine! How are you doing today?

CONDO: I'm well, thank you. How are you?

SULLIVAN: I'm doing good! I was just telling you, we're having weird weather in Colorado, and it's messing with my brain a little bit, so I'm excited to have a really cool conversation to focus on. Because when we talked previously, it was like, I wanted to talk to you about 10 different things, and we were trying to stay focused. So I'm excited to get a chance to dig in a little bit more.

CONDO: Sure!

Introduction to Christine M. Condo

SULLIVAN: Would you mind just telling the audience a little bit about yourself and your background? You have been working in the self-advocacy field for quite a while now.

CONDO: Well, it doesn't seem like quite a while, but I guess it must be. So, yeah. I have a couple of bachelors degrees. I got a bachelors in English writing when I first went to college right after high school. And then I went back to get a bachelors in Animal Sciences to kind of flesh out and because I really liked working with animals. And after that, I started a graduate program in genetics and really hit a wall. I failed my first exam, which is completely unlike me. I couldn't get a hold of the work, I was miserable, horrible, on the bench. And when I went in to see my professors, they were like, "You're not understanding the questions we're asking. You're not answering the questions we're asking." And so...

I had suspected that maybe I had Aspergers. I didn't really know that much about it, but because I was having so much trouble, I went in and took the whole psychological battery—it takes hours and hours, like, they test you for a lot of things—and discovered that I had autism level 1, with all of the attendant challenges, and that it sort of explained why I was struggling in graduate school.

So I left that program, and then I kind of took it upon myself to start learning a little bit more about autism and doing my own research, and that led to starting a graduate program in... I want to say... it was probably a long time ago, like, 2017? 2018? That's when I started to really delve into it and not just read the research by people who do not have autism who've been researching autism since the '70s and '80s, whatever, but by people who actually had autism and were learning about other people with autism. And so it all kind of grew out of there, and I became aware that there's just not a lot of research on people with autism who are not young male children. It's just not. And -- people have this stereotypical idea of what autism looks like in their head, -- not accurate at all. And so, from there, it's just sort of become my mission to give other autistic people a voice and to let the lay people around me know what the actual autistic experience is like for someone like me, who was diagnosed as an adult in her 40s, and sort of... I don't know the language, --- I "pass," is what you could say? Like, people don't know I have autism. Even other autistic people say that they would not guess that I was autistic, so.

And so that's where I am! I'm working on this master's degree, which I hope to finish in less than 5 years, we'll see.

SULLIVAN: It is. It is a lot of work --.

CONDO: Oh my goodness! I wish I could just do all the reading and that was it. If I could just do all the reading, that would be great.

SULLIVAN: Yeah.

CONDO: But they want this thesis thing, like. [Sarcastic sigh]

SULLIVAN: Changed my thesis topic, like, 6 times, and it did not help me.

CONDO: Oh, yeah.

How Writing Has Allowed Christine to Advocate

SULLIVAN: Yeah, I... But, so, your sort of avenue for educating people about autism or talking about autism from the view of autistics has been through writing, right?

CONDO: Yes.

SULLIVAN: I know you've published a lot of articles, you've been in various newspapers and magazines, and you have a blog, and all these things.

CONDO: Yes.

SULLIVAN: What was the motivation for starting that writing process? Was it really just telling people, you know, autistics should have our own voice? Or was there anything else kind of going into that?

CONDO: That's such a great question. I actually had started my blog in 2014 because I suffered a pretty severe, acute-onset nerve injury under my shoulder blade, and I was in excruciating pain day-in, day-out. Took them over a year to figure out what was wrong with me. And I used that blog as a way of sort of working through having all this pain all the time. And then when I received my autism diagnosis in 2015, the focus of the blog shifted sort of naturally into my experience as someone who has just learned that she's autistic.

I've always been a writer; I love writing. It's always come very easily to me, I'm very fortunate in that respect. And so it just seemed like a natural way to continue the work. And when I was doing the research for this thesis that I am now working on, which is how autistics express themselves through language and such. I just suddenly found, in my head, I was like, "Nobody knows what it's really like to be autistic." I have these wonderful friends, none of them are on the spectrum, they don't really get it. And I just wanted... I just felt motivated, or like I had to write this article. It was, like, this thing. And so I wrote the article that went into the Washington Post in 2020, which kind of set this whole ball rolling.

SULLIVAN: Yeah.

CONDO: And she got back to me in less than 24 hours, and she was like, "We want to publish this." I'm like, "What?" (Laughs) "Okay!" And so I have a phenomenal editor, and it went in the Post, and as you know, it just blew up.

SULLIVAN: Yes. It did! (Laughs)

CONDO: And from there, you know, it was like, "I could keep doing this. I need to keep doing this. People need to keep hearing about this." And the article—it was 2 and a half years ago, right—it still --, I still get contacted through my website from people who have just read it and had it sort of impact them in some way. And that's really special, and that's really a gift that I didn't expect but that is really, really neat.

Being Autistic During the Pandemic

SULLIVAN: Yeah. What was the feedback on the article generally? I feel like a lot of autistics were very positive and—

CONDO: Well, the first... It hit in the morning, I remember, and we were just sort of starting to get the idea that we were in the middle of this global pandemic , but it hadn't quite happened yet.

SULLIVAN: Yeah.

CONDO: This was, like, the end of February. And my mailbox, like pandemic, I mean, my therapist reached out to me and said, "Hey, one of my friends said I should read this article, and it's you." (Both laugh) I'm like, "What?" So it really did, it blew up. My sister is a social worker in central Virginia, and she got a lot of people going "Hey, you need to read this!" and she's like, yeah, I, I read it. I know her. (Sullivan laughs) And even the comments, the first several hundred comments, were really, really positive. People were like, I had no idea, or people were like, thank you so much for explaining my life to my friends. Of course, after the first several hundred comments, the trolls sort of --.

SULLIVAN: Yeah.

CONDO: But it was overwhelmingly positive, and I felt—this is something that's still emotional for me—I felt like, for the first time in my adult life, like people actually saw who I really was. Not my neurotypical mask that we talk about, not this sort of disguise that I've put up so that people can't tell that I'm autistic, you know. Actually saw me, and my lived experience, for what it was. And it was really special and emotional for me, and I just... I guess I never thought that would happen. And for that to happen, to have so many people really get it, was— Ah, it was great. It was amazing. It was amazing. So.

SULLIVAN: I remember, I think I started my podcast also right before the pandemic, and was talking about, well, my life at the time as a newly identified autistic. And then my mother, and one of my sisters, and I think a couple other people, sent me your article, like two weeks into having started the podcast. Before it was even out, but people knew I was thinking about it and trying to figure it out. And I remember reading it and just being excited to feel validated. And so, it's really cool that the comments back made you feel validated, and it was, like, this validation circle. Because I think your article did kind of show a lot of autistic people that the way we're living, or the way we're thinking, or the way we're processing is authentic and real. And a lot of us are kind of used to being gaslit or used to being, just, not supported in the neurotypical environment even when people are trying really hard, so to see reflections of my life in somebody else's portrayal there was very authenticating and validating to me. So it's just a beautiful example of autistics kind of together and validating each other.

CONDO: Right? It really is! And also, the fact that it was us sort of discovering each other, right?

SULLIVAN: Mm-hm!

CONDO: Like, I met many other autistic people now with similar experiences to mine. Because up to this point in my life I had, perhaps egotistically, just sort of assumed that my experience was unique, that nobody could really relate to what was going on with me.

SULLIVAN: Yeah.

CONDO: Because I'd never met anyone that could. And so we all kind of realized that there were so many of us, and we weren't unique... Well, of course we were, but we had these experiences in common. That we weren't alone. And that was one of the things, also, that was a really wonderful, special benefit, for me as well as for the other people that I met because of it.

SULLIVAN: Yeah. Yeah. I think that, obviously, there have been autistic self-advocates for decades, right, and the internet has had a big piece of that pie, but there was... at least my perception is that right before the pandemic, and then afterwards, there has been this explosion of content and media and newspaper articles and all these things. And I think a lot of it is because autistics are realizing that there are other people like us out there, and having new ways to engage with each other and find each other is so valuable, so important. Yeah, I just—

CONDO: It is.

SULLIVAN: It's really interesting how your article fits into that timeline. Yeah.

CONDO: Yeah, yeah. We sort of were starting to build our own little community, right?

SULLIVAN: Yeah!

CONDO: And as far as I'm concerned, being able to be a part of a community that doesn't involve me having to leave my house is phenomenal. It's awesome.

SULLIVAN: Yeah, and I'm with you there! (Both laugh) It makes a big difference, yeah. As someone— I don't have particular social anxiety, but I do have sort of the traditional autistic, I get overstimulated, I don't like a lot of noise, I don't like unexpected social conversations where I haven't scripted or practiced what I'm gonna say.

CONDO: Yeah.

SULLIVAN: And so being able to be in my own comfortable zone with my cats and my coffee and still be able to talk to, like, you or somebody else, and it just feels much more authentic and much more comfortable, where[as], you know, if I'm out in the public world, I have to put on -- neurotypical face and—

CONDO: And it's exhausting. Right?

SULLIVAN: And it's exhausting and awful and... yeah.

CONDO: That's what I wish people would understand, because it's exhausting.

SULLIVAN: Yeah. (Sullivan's cat comes on screen and meows) It really is.

CONDO: There's so much on top of just whatever it is that I'm doing that I have to do when I leave the house. You know? And I joke, but seriously, even though I'm not really concerned about COVID anymore, I still wear a mask because it makes my life easier.

SULLIVAN: Yeah! Mm-hm!

CONDO: Because I don't have to worry about facial expressions when I go out.

SULLIVAN: Yeah. Yeah.

CONDO: And that's been huge; that's been a huge help.

Who's your friend? (Laughs)

SULLIVAN: (Pets her cat) This is Leo. Leo has to bomb every podcast that I film recently.

CONDO: He's very handsome.

SULLIVAN: It's really bad, because I -- start talking, and he's like, "You're talking! But you're not talking to me!"

CONDO: Oh, yeah, oh, yes.

SULLIVAN: So, yeah. Thank you. I'm sorry he—

CONDO: No, he's very cute!

SULLIVAN: You're not the first person he's bombed! --

CONDO: Aw, hello! (Sullivan laughs) Ok, sorry.

SULLIVAN: No, that's okay!

CONDO: You were saying...

SULLIVAN: What was I saying? Oh, that...

CONDO: Mask.

SULLIVAN: The mask. Because I have been really interested to hear how many autistics have reported kind of favorably on the pandemic conditions. Not, obviously, with the pandemic itself, but all of the different social situations that we entered and the way social situations were framed during the pandemic, in terms of wearing the mask, staying apart from each other, not necessarily having to talk to strangers as much because no one wanted to get close. All of those things really made going out into the public world a lot easier for me and a lot easier for many of the other folks I've talked to. And it sounds so antisocial, but, in my experience, it actually made me more able to socialize with the people I wanted to socialize [with], because I had more energy, because I hadn't just had to talk to John from down the street about some random social thing that no one cares about and used all my energy for that. And it's funny how many autistic people have kind of said, similar to you, that taking off the mask during the pandemic was a lot easier and a lot more supportive for them.

CONDO: Yeah.

SULLIVAN: So, yeah. That's all.

Autism and Sensory Experience

CONDO: I do want to point out, though, because there is a caveat there, even though it's not one of my things: There are autistic people who can't stand to have something touching their face.

SULLIVAN: Oh, for sure. Mm-hm.

CONDO: And I feel so bad for them.

SULLIVAN: Yeah.

CONDO: Because they literally can't leave the house. They have to choose between having a sensory experience that's extremely difficult and, in some cases, almost literally painful, or staying inside.

SULLIVAN: Yeah.

CONDO: And I think that is one of the things about the autistic experience that gets overlooked when you're talking to someone who, quote-unquote, "looks normal," is that... They're referred to as "high-functioning autistics," right? And I find that really funny. Because I don't feel high-functioning in any way, as far as that goes. We have the exact same sensory challenges. We get overstimulated, we get overwhelmed, we have to deal with meltdowns, we stim, we do all of these things that people think, like, "traditional" autistic people—or what they think of as autistic people—[do]. We have the same struggles, and it's not just like being introverted. It's on a different level from there.

SULLIVAN: Sure.

CONDO: It really is almost physically painful for us in some of these situations when we're overstimulated by our sensory environment. And that, you know, the thing with the cloth on the face, it's like, that's not one of my things, but certain sounds are my things, and I can't function in those environments.

SULLIVAN: --. Yeah. Yeah. I also get very easily overstimulated by sound. And in terms of caveats --, another thing is [that] I have Auditory Processing Disorder, which a lot of autistics [have]. It's not the same, but it's co-occurring a lot. And the masks made it so you can't read lips anymore. So it got rid of my whole process for -- understanding what people -- saying to me, and I had to say, "What? What? What" like, 6 times more often, because usually I can see the lip and I can guess, but if I can't see the lips move when you're talking, then I, you know. So it's definitely a mixed bag. But I think what was interesting to me is that, as many people as the restrictions [of the pandemic], not the pandemic itself but the social differences of the pandemic restricted, as many people were -- lifted up by different social obligations in the public sphere, which I just think is really interesting.

CONDO: Yeah, it sort of created a more level playing field for us—

SULLIVAN: Yeah, yeah.

CONDO: Where we had an environment where we could really excel or work up to our actual potential without having to spend all of this extra mental energy making neurotypical people... comfortable around us.

SULLIVAN: Comfortable. Mm-hm.

CONDO: Because that's something that I want to do. It's not, like, a chore. I want people to be comfortable around me. I want friends, I want... you know, I'm in a relationship, I'm newly engaged.

SULLIVAN: Congratulations!

CONDO: Thank you. Thank you. Yeah, it was late May, early June—

SULLIVAN: Oh, wow!

Masking as An Autistic Woman

CONDO: And so it's still very, very new for me. But when I think of, like, this is a relationship that was enabled by the fact that I could go out and sort of, like, not put people off. You know?

SULLIVAN: Yeah.

CONDO: And even though, at home, he knows me so well—we've been together over 5 years—I don't have to wear a mask around him. But it did sort of, at least initially, my ability to blend kind of facilitated our getting together and dating and such.

SULLIVAN: Mm-hm, yeah. I think it's to some degree unfortunate that we have to mask at all, but it's also very true that it's still very necessary to be successful in certain aspects, which is... yeah. So, one thing I wanted to ask you about is: I want to talk to you about your thesis too, but in your earlier work, you focused a lot on how women and girls present autistically. Which was a weird way to say that, because I'm tired today, but how autistic women and girls have different traits, or different sets of traits, or kind of perform differently than men traditionally do. And masking, I think, is one of those spaces where it looks a lot different, sometimes, for women autistics than for men. But are there other traits, traits that are most overlooked, is I guess what I'm getting at, for autistic women or girls?

Executive Dysfunction and Autistic Women

CONDO: I think... You know, it's a good question. Because of course masking is, in fact, one of the traits of autism in women. But I think it's some of the things that we have to do in order to be successful in school, like in college or in a job. We have to sort of make these mental compensation mechanisms—for me, it's to understand visual information. Like, that's a really hard one for me. Like, when I would read studies now, I don't look at the graphics, because they just, they confuse me.

SULLIVAN: Yeah.

CONDO: They make it worse. And the fact that... And of course, you know, we have executive functioning workarounds that we have developed, and lists in our head, and things like that. And I think a lot of women that are autistic don't realize that not everybody has to do that.

SULLIVAN: Yeah.

CONDO: That they're doing all of this extra mental work to perform at the level that is, you know, equivalent to other women of their similar experience, intelligence, what have you. [It] is all of that extra mental work, all of those workarounds that we developed when we were younger to be able to do our schoolwork, to be able to do our classwork, and then to be able to do our work at work.

SULLIVAN: Mm-hm.

CONDO: And I think that's one of the things that surprised me the most. Because I thought, Aspergers, I just thought of the whole social piece, and the sensory piece. I didn't really think about the fact that it's also a learning disability in a way. And so, understanding that I wasn't good at those things because I was autistic, not because I wasn't trying hard enough or concentrating or whatever. So, that I think is something for women on the spectrum that they should be aware of, and kind of let yourself off the hook for.

SULLIVAN: Yeah, yeah. So, the executive dysfunction piece of... I think a lot of people aren't even aware of what executive function means and all the little bits that go into it, and I completely agree that a lot of autistic women are doing a lot of extra work that they might not otherwise notice they're doing. That's a really insightful piece, thank you.

CONDO: Yeah! I guess we should do the executive function primer, right? (Sullivan laughs) Like, "what is executive function?" The simplest way to put it, for me, is: information prioritization.

SULLIVAN: Yeah. Yeah.

CONDO: So, executive function allows you to prioritize incoming information, it allows you to prioritize tasks, it allows you to set up and plan your day. And if you don't naturally do those things, the workarounds are...

SULLIVAN: A lot.

CONDO: Really a lot, yes. "A lot," I think, is a good way of putting it. (Both laugh) It's a lot.

SULLIVAN: Yeah. I'm trying to think. And it’s like, if you Google "executive dysfunction," some people tell you there's 7 executive functions, there's 10, there's 12. But there's, like you said, the planning-prioritization; there's task initiation, starting a thing, seeing it through and finishing it; there's working memory, being able to hold information in your head for a period of time, whether it's visual or audio or just thinking, like, thought information, which I am really poor at—and I didn't realize how poor I was at it until, really, I started living with other adults, and they could just do it, and I was like, "what do you mean you can walk across the room and remember what color the thing was the whole way across the room? (Laughs) Because I can't do that!

CONDO: Oh my gosh.

SULLIVAN: And now I'm like, "ok, most people can do that. Got it. Check." But I, like... I don't remember colors. I don't remember shapes. If I look away from [a] map, I won't remember what the map said anymore.

CONDO: It's gone. It's gone.

SULLIVAN: Yeah. It's gone, immediately. So it's like, that's an executive dysfunction, right? So a lot of us are struggling with those things; a lot of women are struggling with those things, and not realizing that it's something you should be able to do. I was just like, "No, it's normal for people to not remember what color the thing was the minute they look away." And then, you know, it took living with other people to be like, "Oh..."

Because, you know, none of my family can either, but, like, oh, let's be all surprised, because they're probably neurodivergent too. So it can be complicated to be an autistic woman.

Being Faceblind

CONDO: Yeah... I think, for me, I don't know if this happens for most autistic women, but... I'm kind of faceblind.

SULLIVAN: Mm-hm!

CONDO: It's really embarrassing.

SULLIVAN: I'm really faceblind. Yeah.

CONDO: (Laughs) Somebody will be like, "Hey! How you doing, how've you been?" and I'm like, "I have no idea who this person is or where I might have met them, but I'll just play along! Hopefully—"

SULLIVAN: Hope they eventually give you information enough that you can figure it out.

CONDO: "—it'll ring a bell or they'll say a name..." Because usually, if they say their name, I'll be like, "oh yeah, I remember the name."

SULLIVAN: Mm-hm.

CONDO: I just— (Laughs) Yeah. So, I know, and that's just really hard. And it’s just another one of those pitfalls, social pitfalls, little social potholes that we hit, trying to be autistic in a neurotypical environment.

SULLIVAN: It's so frustrating. I'm also faceblind. People think that you don't care about them because you don't remember what their nose looks like. (Both laugh) And it’s like... you changed your earrings and your glasses, I had no chance! (Laughs)

CONDO: That's great.

SULLIVAN: This is not on me! But, yeah, yeah. So yeah, that's another really good example of ways that autistic women might be compensating that other people don't have to, because they remember faces and don't have to memorize earrings or accents or glasses...

CONDO: Hairstyles, interesting purse...

SULLIVAN: Hairstyles... shoes...

CONDO: (Laughs) Right?)

SULLIVAN: I always look at shoes.

CONDO: Shoes is good.

SULLIVAN: Women sometimes have multiple pairs of shoes, but men usually have the one pair of shoes, so... (Laughs) (Unintelligible)

CONDO: It's so hard. Like, I always look at someone like, is there some sort of unusual feature or something I can..? Because I can print objects, I just can't print faces.

Short-term memory of objects

SULLIVAN: I can't print objects either, so... that must be really nice. Not for very long, anyway. If I'm looking at it, I can recognize it, but if I look away I don't know what the thing looks like anymore.

CONDO: No, yeah, I'm that weird person at work who knows where everything is.

SULLIVAN: Mm-hm.

CONDO: Even stuff that's not my department. Like... yeah. They'll be like "Hey, Christine, where's the such-and-such" and I'll be like "Oh! It's over there, you just -- there and then on the fifth shelf up on the left..." I don't know why, it's like I have this great memory for where people lost their keys, as opposed to the person who actually lost them, (Laughs) so.

SULLIVAN: See, I find this so interesting! We're going so off topic, but it's so interesting! (Condo laughs) I'm also really good at mapping, in terms of, I can tell you the same thing, like, "Get the dish at the top left shelf, it should be this far above your head," but I couldn't tell you what the dish looks like.

CONDO: I know, right?

SULLIVAN: I can say... I can sort of... I'm thinking of it in [such] a way that I understand that it's the dish, and I can maybe say it was (Gestures with hands) this big, but don't know what color it is, I don't know if it's ridged or flat, I don't know if it's in a pile with other dishes or not, you know? I can give you the directions to find the thing, but I can't tell you what the thing looks like. And I never quite realized that before just trying to describe it to you now. So I'm gonna go look that up, what does that mean? (Both laugh) Anyway.

CONDO: It's always an adventure.

SULLIVAN: It's really... I just, I think brains are so cool. I just like talking to other people about, "Well, how does your brain work? Is it the same as mine?"

Why Christine Chose Her Thesis Project

Could we— I want to talk about your master's degree before we get too off topic, because I think what you're working on is really cool. Can you tell us your thesis topic again? I know you mentioned it before, but—

CONDO: Sure. I danced around.

I feel like I have to give a little bit of backstory, because—

SULLIVAN: Yes!

CONDO: So, yeah. Sorry if this is gonna be kind of a drawn-out explanation, but let's see if I can Cliffnotes it. Do people still use Cliffnotes?

SULLIVAN: I don’t know, but I’m old enough that I did, so.

CONDO: Sparknotes? Anyway. So, when you think about underprivileged communities, you think about, say, people of color, or people who are non cishet, or people like that. And you think that they, those people, are the ones that you sort of turn to when you want to learn more about that experience, the experience of being a person of color in this country for instance. But when you have people with disabilities, they are assumed, because of their disability, whatever it may be, to not be able to speak for their experiences because they’re disabled. So for people with autism, we are really in the dark ages still, I feel, when it comes to research, because autistic research, by and large in the scientific community, is still dictated by completely unbounded assumptions made by autistic researchers in the ‘70s and ‘80s who studied nonverbal male children.

SULLIVAN:A tiny population of autistics, yeah.

CONDO: Yes. Yes. And so, autistic people are not thought… they’re supposedly missing certain human qualities, right? And so we lose what’s called our ethos, or what it is… our ability to speak for ourselves, because we’re autistic. And Dr. Yergov really defines this sort of circle really well, about how you can’t understand me because I’m autistic, and then because I’m autistic I can’t explain something to you, but then you don’t get me because I’m not human, and it’s just this thing. And so what I decided to study was: As you said, we’re sort of in a renaissance right now with autistic women and people on the spectrum sort of writing about their experiences, and sharing them, and coming into the mainstream. So what I wanted to study is how do autistic people get that sort of ethos, that sort of “Yes, I can speak on this topic” kind of thing back? How are they reclaiming it? What are the rhetorical strategies they’re using to sort of take back—I feel like this is a cliché now—but to — take back their narrative, re-assert themselves as being able to control the narrative on what the autistic experience is like and what people think of when they think of autism.

SULLIVAN: Yeah. And you’re doing that through a series of interviews with autistic people

CONDO: Yes, interviews, and also I was given permission to screen a couple of private Facebook groups for autistic people

SULLIVAN: Wonderful.

CONDO: All, of course, the personal information has been removed. Quite literally, it’s just the language. And go through and sort of, like, of course I’m doing a qualitative data analysis, which involves this archaic thing that’s called “coding,” I don’t know why it’s called “coding” but you basically pull out themes, and then you connect them together or whatever.

SULLIVAN: Yeah!

Common Themes in Autistic Conversation

CONDO: But what’s been really neat for me is that, of course, all the expected themes come up —. As far as having challenges about being autistic in a non-autistic world, and. But one of the things that I was — surprised by is that in not one single instance have I come across someone who says that they had a normal conversation with someone who wasn’t autistic. (Danielle laughs) It never happens. They’re always, either the neurotypical is put off by them or doesn’t understand them, or they have to sort of put the mask on in order to communicate with them. It’s like being thrust in the middle of a community that speaks a different language from you and having to sort of wade around and figure that out.

SULLIVAN: Yeah. Yeah.

CONDO: So really, when we think about rhetorical strategies, the idea that you have to come to the table every time and speak in a language that’s not native to you, I think that’s something that informs a lot of our experiences to an extent that maybe we don’t even realize, for people on the spectrum.

SULLIVAN: Mm-hm. Yeah. One of the things I work with clients a lot is (Air quotes) “communication skills,” but one of the things we talk about is how autistics are very often asked/required to learn how neurotypical people communicate, but neurotypical people are very rarely required, or even asked, to understand how autistic people communicate, even though we do have some good data and some good strategies for understanding how autistic people communicate. So it’s not like a foreign language with no dictionary. The dictionary exists, just no one wants to, like, take it out of the library and read it, you know? And that’s really frustrating.

CONDO: It is.

SULLIVAN: So it’s interesting to get some of that from your study too. Yeah.

The Autism Paradox and Reverse Accommodation

CONDO: Yeah. I also, of course I mentioned the autism paradox, which is the term that I’ve come up with to describe the situation that quote-unquote “high functioning” autistics find themselves in, which is to either show their autism and be socially ostracized, or hide it, and not be given the accommodations that they need to function.

SULLIVAN: Yeah.

CONDO: And so, what you’re talking about, about how neurotypical people don’t have to learn to speak autistic—this happens in the workplace. It’s what I call reverse accommodation. Where if there’s, say, a misunderstanding between an autistic employee and a neurotypical employee, the autistic employee is the one who has to make up the gap.

SULLIVAN: Yes! Mm-hm.

CONDO: They have to, we have to, accommodate the neurotypical people in our workplace, it’s not the other way around—even though it should be. Right? Like, I could explain autism in the workplace to someone in 5 minutes if they would just give it to me. But they don’t.

SULLIVAN: Mm-hm. Yeah, yeah.

CONDO: So that’s… (Both laugh) I think I should stop talking now.

SULLIVAN: It’s definitely something—

CONDO: It’s very frustrating.

SULLIVAN: No, you’re— I’m with you.

CONDO: And it’s happened to me so many times, and so I have — personal… like, I have a little resentment about it still.

SULLIVAN: (Sigh) Yeah… The number of guests we’ve had on to talk about their experiences with various forms of neurodiversity in the workplace, and how many people have reported struggling really hard, even with management that’s sort of trying their best within the realm of what they’re able to do, and companies that are supposed to be neurodiversity-friendly and affirming and all this, and it’s still, like, why is it so hard? And I think that you’ve pinned it down really well: It’s hard because the onus is still on the neurodivergent person to do the work to accommodate, as opposed to the company or the other employees. So I think that’s really good to highlight, even though it’s very frustrating. Yeah.

CONDO: And I have also found that part of it’s generational. Right? Women, or people, my age that I interact with, they’re coming to this very late, or very late in their lives. And so when I interact with young people, say, the next generation down, or people my niece’s age—she’s gonna turn 19 in the fall—and when I tell people like that that I’m autistic, they just are like, “Oh, okay,” and that’s just something that is very normal. Not normal, but is something that they are familiar with.

SULLIVAN: Acceptable, reasonable, yeah, like—

CONDO: Yeah! It’s just another thing to them, you know?

SULLIVAN: Yeah.

CONDO: And so, in the places that I’ve worked where there’s a lot of young people, it’s been a lot easier.

SULLIVAN: Yeah.

CONDO: Because I can just say, “Hey, I sound like this sometimes; it’s because I’m autistic,” and they’re like, “Yeah, that’s cool.”

SULLIVAN: Mm-hm!

CONDO: Like it’s no big deal, so.

SULLIVAN: Yeah. Yeah. I have also noticed a bit more flexibility in younger generations, and I wonder if it’s related to the broader acceptance of (Air quotes) “mental health conditions,” even though autism is not a (Air quotes) “mental health condition.” But I think [among] the younger generation there’s a lot more emphasis on, it’s okay to have depression or anxiety or any of these other things. It’s something that is (Air quotes) “treatable,” and you can get better, or feel better, or work on it, right? And it’s okay to need accommodations for those mental health conditions. And autism is not a mental health condition, but it’s kind of correlative, in that some of the accommodation speech, like the way we talk about it is similar.

CONDO: Yes.

SULLIVAN: And I don’t know if you… You don’t have to have a response to that.

CONDO: No, yes!

SULLIVAN: But I just thought about it somewhat, and I wondered if that’s part of it. I have not looked into it.

CONDO: I think so. I think so. Because I think they’re just more open to the idea that not everyone’s mind works the same way.

SULLIVAN: Yeah, brains are different. Mm-hm.

Autistic Traits Are Culturally Variable

CONDO: Yeah, brains are different. And that’s something that I think — a main hurdle for people who don’t understand autism. That’s usually the main stumbling block, is that the idea that someone else has an experience of their internal and external environment that’s completely different. The idea that that experience is learned, it’s not innate. And of course, when you think about it from a cultural perspective, of course it’s learned, because different cultures have different ways. And so autism in different cultures is sort of another one of these uncharted territories where, you know, when you put autistics in a culture like the culture we have in the US, which is all about individualism, and putting yourself out there, and you know—and then you think of maybe a culture that’s more cooperative, that’s more introverted, that puts more of a premium on different behaviors: How does autism show up there, and is it different? And is it more accepted, or is it less accepted, or whatever? And so if we can apply hat cultural lens to autism, all the sudden you can kind of get over that hurdle and be like “Oh, there’s different ways to experience the world.” And once they understand that the way that they experience it is learned and not innate, and that it can be different from person to person, that’s huge. That’s the big… If we can do that, then I think the rest of explaining autism gets a lot easier.

SULLIVAN: Yeah, yeah. That’s a really interesting point. I’ve seen some research on kind of comparing how autism presents, or — traits of autism, between different cultures, but it’s mostly been done by I believe neurotypical researchers. So hopefully that’s something that autistic researchers can start working on in the pile of all the other stuff that they’re working on. We just need more autistic researchers. But it’s been nice to see more people recently, see more names published who are self-identifying as autistic —. Awesome.

Creating Legal Protections for People with Invisible Disabilities

And what is your hope for, once your thesis is done—which is, we will cross our fingers for very soon (Condo laughs)—what is your hope for what that work will do for the field?

CONDO: Right now, there doesn’t seem to be a lot of autistic people who are respected as having these academic careers and — these academic credentials that they can then turn on and use to explain their autism and sort of redirect where autism research is going. And where, for me, one of the big things that I want to be able to do from this thesis, and in the future, is that right now, the disability accommodations laws that we have are very specific. They’re super explicit when it comes to accommodations for people with physical disabilities. You know, ramps, and parking spaces, and crossing signals, and all of these things, they’re down to, like, inches, and numbers, and it’s all this hard data that employers can use to sort of set up, or that people can use in public spaces. There isn’t anything explicit for people with invisible disabilities such as autism, such as people with psychiatric conditions like bipolar disorders and things like that. And that leaves this whole gray area for employers to either decide that their employee doesn’t need the accommodations or that the accommodations that they do need aren’t reasonable.

SULLIVAN: Yeah.

CONDO: And there’s no hard, like, “This is what you do if you have an autistic employee.” And I would like to get to a point where, if someone says that they’re autistic, they don’t actually have to prove it in order to get accommodations.

SULLIVAN: Yes.

CONDO: You just take them at their word. And that the accommodations that they get are understood by someone who hires an autistic employee is going to know exactly what they would need, just as they would know what a Hard of Hearing employee would need, or what a visually impaired employee would need. And so, if we can put together actual language, actual things and terminology for these accommodations, and enshrine those into Americans with Disabilities law, then, you know, that’s the next frontier, right? Like, that could change the way people who are growing up now and coming into their career and coming-of-age to be able to work… Their experiences, especially if they’re on the spectrum, of work are going to be very different from the experience that you and I’ve had. And that’s the hope, I mean, that’s where I want this to eventually go. I don’t know if it’s going to happen in my lifetime, but I at least want to carry the football down a few more yards down the field. (Both laugh)

I think that's all… I don’t know, maybe it’s too general, but I’m like yeah, that’s all I would like to do. Just get it… get it a little further for the next generation —. Yeah. That’s fantastic. And so, sort of collecting vocabulary and terminology that folks are using to authenticate ourselves and speak about ourselves is going to help kind of set up a dictionary—or maybe an encyclopedia?—some kind of reference text for the government, maybe, to get into the ADA, or the employers to use to set up accommodations in the workplace.

SULLIVAN: Right?

CONDO: Yeah!

SULLIVAN: Because that is, it’s not there. We don’t have that language.

CONDO: No, not at all, not at all.

SULLIVAN: No, so.

CONDO: Yeah.

SULLIVAN: That’s awesome! That’s really cool!

CONDO: That’s, yeah, I mean, that’s sort of my pie in the sky, right?

SULLIVAN: Yeah.

CONDO: Like, that’s something that I would like to make happen if I could. But…

SULLIVAN: But it does make sense that once the work’s out there, then other researchers can also pick up the ball and carry it… like, you know, that it becomes a little bit more accessible to people what the next step is, once we have the terminology and some ideas of…

CONDO: I feel like, in my lifetime, there is a thing that has come into being as part of onboarding into every job that I’ve had, which is sexual harassment training.

SULLIVAN: Mm-hm.

CONDO: That didn’t always used to be a thing.

I don’t know if you remember, but that’s new. And the terminology about it is also only maybe 20 years old, which — feels new.

SULLIVAN: Yeah!

CONDO: Feels new to me, because I’m old.

But I would love to have, say, neurodiversity sensitivity training as part of that on boarding.

SULLIVAN: Yeah.

CONDO: I mean, wouldn’t that be amazing? Right?

SULLIVAN: Yeah. Yeah.

CONDO: Like, you don’t just have to watch a sexual harassment video, you can also watch a neurodiversity video and, like I said, give me 5 minutes, that’s all I need, just give me 5 minutes and [00:43:30.14] (Breath on mic) I’ll give you all the information that you need. So. Anyway, so now that we’re actually, like, dreaming of things that I would love to happen in my lifetime, — to throw that in there, because I think that would be so cool.

SULLIVAN: Yeah. That would be amazing. And you’re right, 20 years… like, it feels like a long time. And it would be nice if things were faster. But realistically, it’s not really that long in terms of human change. Like, we’re not a particularly quick… (Laughs) species—

CONDO: I know.

SULLIVAN: —in terms of changing our minds about things.

CONDO: It takes a while, it takes a while.

SULLIVAN: So— yeah, yeah. But that would be pretty amazing if, like, by the time my kids grew up, there was a neurodiversity training every time you onboarded. Like, that would be pretty huge. That would have changed a lot of my experience in—

CONDO: Yeah!

SULLIVAN: Like, maybe we would have been identified earlier, for example, if somebody had told me what autism was when I was 18? (Both laugh) Instead of, you know. Yeah.

CONDO: Right? I mean I was a child in the '70s. Like, the word "Aspergers" wasn't even a... well, it was a word, in the research community, but, you know, parents didn't talk about their kids having Aspergers. Like, no one even knew what it was.

SULLIVAN: Yeah, yeah.

CONDO: My poor parents. They had, like, an alien species on their hands, (Sullivan laughs) and they did great! They were so great.

SULLIVAN: Yeah, yeah.

And sometimes just having more education [or] more training would have been really helpful, so. Like, my parents did awesome! But also, it would have been nice to be caught a little earlier.

CONDO: Nice to have the language, right? And that kind of comes back around to what we were talking about, [which] is that, you know, we need to create a language around this, we need to create terminology. And then, through that terminology, it'll be that much easier to educate people about neurodiversity.

SULLIVAN: Yeah.

CONDO: Which is, I think—I don't want it to sound like autism is the only type of neurodiversity that there is, even though, of course, it's the big one that everybody thinks of, but there are other things.

SULLIVAN: Oh, for sure. Yeah.

CONDO: So, yeah, you know. [There are other things] that fall under that umbrella, like ADHD to some extent, or certain psychiatric challenges that people have.

SULLIVAN: Yeah.

CONDO: So.

SULLIVAN: I think we're just both autistic, and so we're focusing there. But it's also... I think it's good. Doing research in one field very often leads to results and movement in adjacent fields, right?

CONDO: Mm-hm.

SULLIVAN: Like, you can make leaps and bounds in one narrow space, and that will spread out to other [spaces]. Just the way that autism advocates have taken lots of language and ideas from the disability community, right, or the chronic pain community, or the... And they're all different. And they're all unique. But there are some places that we can help each other and move each other forward. So, yeah.

How Do Autistic People Talk About Autism?

I know you're only part way through, so I don't know if you can answer this yet, but you can let me know. Have you noticed any specific trends in language autistic folks are using in terms of the terminology itself, or the way that we're talking about ourselves, was there anything surprising in that piece so far?

CONDO: That is a good question. What I am really noticing is these sort of fundamental differences between being male, either by birth or by choice, or female, and the experiences of autism, the way that they talk about their autism. Those experiences are very, very different. I don't want to make any grand proclamations about, you know, the way men and women are treated in our culture,

SULLIVAN: No, this is a certain sample size, yeah.

CONDO: —because obviously that's part of it, --? But at the same time, I mean, men are much more focused on finding a romantic partner or something of that notion; they're very much romantic relationship oriented, whereas women are much more like, "I have friends, I just wish I had a boss that understood me," so they're much more work-oriented.

SULLIVAN: That's so interesting. Cool.

CONDO: So yeah, that was something that I didn't expect to be.

Now, my dataset trends kind of young, because it's on Facebook, because it's on social media, and because—although I'm on a Facebook diet right now, I haven't actually checked it since the last time I updated my dataset, sadly—so they're much more comfortable in that space and they're much more accustomed to having a safe space to talk about the things -- are important to them. But yeah, that was an interesting trend that I noticed. And in fact, some of the males have had such negative experiences, and are so jaded and pessimistic, that I couldn't even include some of the things that they wrote because they were so chauvinistic, so pessimistic, so, you know, painting an entire gender with one brush kind of things that were born out of that frustration [of] "why don't women understand me, why [do] women date guys that are like this and not guys that are like me." [00:48:19.19]

It’s not really moving the conversation forward, you know? I mention it because it’s important, because there’s a huge community of autistic men who really feel sort of shut out of this essential human experience, but I don’t want to normalize the way that they express their feelings about it.

SULLIVAN: Yeah, but it can still sort of be really important to acknowledge that they’re there and…like for my side, and I’m sure for folks who are listening who are more on the intervention side rather than the research side, it’s good to know. And I guess that’s just another point to why research like this could be really helpful, right? Is to tease out, Oh, there are groups that are having this experience, and that maybe this kind of intervention would support them…

CONDO: Yeah.

SULLIVAN:...to feel more integrated and to feel more part of the community, so.

CONDO: Yeah, I talk about autistic myopia a little bit, because I feel like we have these big brains that like to focus and study things.

SULLIVAN: Yes, we do.

CONDO: We have these obsessions and passions and I feel like sometimes these men get so stuck on turning that brain on themselves instead of turning it outside themselves, you know, on other people, what the experience must be like to be somebody who isn’t autistic. And I feel like if they could do that, if they could take that big, amazing brain and turn it towards, you know, point it at something else, I think that they would get a huge benefit from that, and that it would really change their lives in a really positive way.

SULLIVAN: Yeah, for sure.

CONDO: And not just men, I mean, women do it too. I just…

SULLIVAN: Yeah, but your data set just happens to be, yeah. That’s really interesting, thank you. Cool! Is there anything else that you would like me to be asking you about your research that I haven’t asked yet? Or that the audience should know?

CONDO: Oh I don’t know - you got another hour? Because I could keep going.

Representing Autistic Characters in Television and Media

Like, I’ll be watching TV with my fiance and somebody on some show will be like, Oh, we think so-and-so’s on the spectrum, and he’ll just sort of look over, kind of side-eye me, and I’ll be like, It’s not gonna set me off, don’t worry. But I guess that’s the one final piece, right, is autism in popular media, and I would really like to see–there are some shows, like on cable or these smaller networks that do feature people who are actually autistic playing autistic characters, and that’s really important. I just feel like right now, the mainstream hasn’t really gotten there yet.

SULLIVAN: Yeah, I’ve noticed that too. I’m not so much, um - I don’t watch a ton of TV. I have that neurodivergent brain problem where it’s too scary because I don’t know what’s gonna happen, so I have to read spoilers and then watch it, which defeats the purpose sometimes. But I was talking to somebody about how there have been more characters who are supposed to be autistic on network television recently, like in the past year or two, and there’s also more autistic actors up and coming, and I see their names more often, which is fantastic. But it still seems so limited in terms of who you actually see, like it’s a lot of, from what I’ve seen, and there’s probably tons of shows I’m not even aware of. But the ones I am aware of, it’s a lot of like white male autistics. And it’s like, Cool, there are autistics on TV, but I haven’t seen any positive portrayals of women autistics.

CONDO: Or, they will imply it without actually saying it…

SULLIVAN: Yeah, without actually saying it.

CONDO: …and then all they show is sort of like the super crip kind of thing, where it’s like all of the things they can do because they’re autistic, and none of the stuff that actually goes with that, like the meltdowns, and shutting down, and mental exhaustion, and the frustration that comes from always having to be someone you’re not. I would like to see more of that.

SULLIVAN: I would just like to see autistic characters carrying around ear defenders, and like fidgets! I would love to see everything you just said, and I think a true replication of the autistic experience would include all the high points and the low points, but also the daily experience of like, you know, wanting my spinner ring and playing with it incessantly, or like people doing vocal stims in the background, or like…there’s nobody…

CONDO: No, nobody wears chewlery! I’m a big, I have pendants…

SULLIVAN: We have a lot of those!

CONDO: Yeah! I finally found, actually, I worked with someone who made them for kids. It was like, Hey, could you make some for adults so that they look kind of like regular jewelry? And they were like, Yeah, yeah! We worked together. We came up with a design. I have a couple. Yeah, just walking around and maybe actually seeing them having a difficult situation at work and sticking it in their mouth.

SULLIVAN: Yeah! Like that kind of daily living stuff, that’s really what I would like to see. I would just watch a show, an episode, of an autistic walking around and occasionally chewing on it. I just want more autistic characters.

CONDO: Or rocking back and forth. I’m a rocker, so if I’m…

SULLIVAN: I’m a rocker.

CONDO: Yeah, if I’m starting to run low and need some self-soothing, I’ll just start to sway a little bit, when I'm in line at the grocery store, the pharmacy or whatever, yeah.

SULLIVAN: Yeah. I sway sort of horizontally. Both of my kids rock this way [front to back]...

CONDO: Oh no, I’m a side-to-side…

SULLIVAN: Yeah, I’m a side-to-side, but it’s really funny because at the end of a long day, we’ll all be sitting, watching TV, like a cartoon or something, and I’m like sitting there doing [a side to side sway] and they’re doing [a front to back sway] on the couch, and, like, I would love to see a camera just pan by: Here’s the autistic family rocking together, you know? That’s what we need in our media.

CONDO: Yup.

SULLIVAN: Cool! Well this was a great conversation. Thanks so much for being here.

CONDO: I really, I don’t get to talk to other autistic people enough, so this has been a real pleasure for me too, and I’ve really enjoyed it.

SULLIVAN: Oh, I’m glad! I could never talk to enough autistic people. I am social, I just don’t want to leave my room!

Where to Learn More About Christine M. Condo

Can you let us know, where can folks find your blog, or any of the work you’re doing? Where’s a good place?

CONDO: So, um, best place, sort of your one-stop-shop, is my personal website, which has links to my blog, and it should have a link to my pieces on Medium, but I’m not sure if it does, because it’s been a weird summer, and that is just my name. It’s ChristineMCondo.com, and from there you should be able to find me. My blog is ThisGreatApe.com. That’s my handle on Twitter, on Medium, whatever. I’ve had the blog for like 8 years now and there’s no changing it now.

SULLIVAN: That’s how it is.

CONDO: That’s how it is. So it’s ThisGreatApe.

SULLIVAN: I’ll put links in the show notes for folks, so please go check those out. And you should read Christine’s articles, they’re really good.

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