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[Music]

HARVINDER WADHWA: So, Elena, I understand this episode is about autism.

ELENA HUDGINS LYLE: Yeah.

HARVINDER WADHWA: Please take it in the right spirit when I say I'm excited about it because I don't know anything about it and I want to learn about autism.

ELENA HUDGINS LYLE: Yeah, for sure. I'm excited too. I have a bit of a connection to this topic. My brother is autistic and I have some autistic friends, and I've seen them talk about things they get asked. And especially talking to my friend Michael, a question they brought up to me is “Are you sure?” as in like “Oh, are you sure you're really autistic?”

HARVINDER WADHWA: Are you sure they ask that question?

ELENA HUDGINS LYLE: Yeah. I can't tell if you're trying to lead me down a serious thought pattern or like this is just dad joke?

HARVINDER WADHWA: OK, so here is a bit of a confession. A lot of inappropriate questions which we have discussed in the past, I have been at least guilty of thinking a few of them myself. But this one I can claim some moral superiority. I would have never asked this question. I mean, why would I question anybody what they're telling me about themselves? Makes no sense.

ELENA HUDGINS LYLE: Well, I feel you. Go off, Harv. I support this. I think from what I've heard specifically, this question gets asked to autistic folks who people assume aren't autistic because of how they look or act and how it falls outside of the person's expectations about what “autism” looks like. But don't quote me on that. We will, I'm sure, get into more of where this question comes from very shortly.

HARVINDER WADHWA: For sure, for sure.

[Music]

ELENA HUDGINS LYLE: First up, we're speaking to Jamila, who goes by Jam. They run the TikTok 2jam4u where they share their experiences of being an autistic Black woman in Toronto.

HARVINDER WADHWA: So, Jam, tell us a bit about how you got into making TikToks.

JAM: Oh yeah, yeah, OK. I am 30 years old, which seems like an old age to be on TikTok. I feel like most people who are not 12 got on TikTok in the pandemic because they're really bored. And that was me, and I had also just gotten my diagnosis. And so I wanted to kind of see what people were talking about and hear it from actual individuals instead of just, you know, medical texts and autism mommies talking about how hard their lives are. So I want to see what other autistics had to say. And oh man it’s incredible. Autism TikTok or AutisTikTok—

ELENA HUDGINS LYLE: Oh my god. Brilliant.

HARVINDER WADHWA: Wow.

JAM: An amazing play on words, really. It's like, it's the happiest place on Earth. I love seeing other people talking about stuff, and just like so many things, I thought I was living a very authentic, original experience. Turns out now I'm just like one of many. Everybody is living the exact same life as me, apparently.

ELENA HUDGINS LYLE: Wow. Is that a comforting moment, or is it like, damn it, I'm not original anymore.

JAM: Like, honestly, I don't want to be original, especially if, like a lot of your original experiences are, like, not fantastic.

ELENA HUDGINS LYLE: Right, yeah.

JAM: It's nice to know that other people like, it's not a you problem, you know?

ELENA HUDGINS LYLE: Yeah, yeah.

HARVINDER WADHWA: Yeah, guys, that brings me to a point, slightly off topic. I think I should start a project management TikTok.

ELENA HUDGINS LYLE: [laughing] Oh no.

JAM: Why not?

ELENA HUDGINS LYLE: Harv is, for context, a project manager at a bank, which he regularly tells is the most, most exciting job ever. So please tell me how this goes.

HARVINDER WADHWA: Like Jagmeet Singh, I'll do a dance about project management.

JAM: There's always a niche market for anything on TikTok, like you would be surprised. Like, there's probably someone out there that's like, “Wow, this is great. Blow it up, it’s viral!”

HARVINDER WADHWA: So Jam, if I may, two parts. A, when you were growing up, did you suspect there was anything different with you? And B, how did you find out that you were autistic?

JAM: I knew I was different my entire life. I can almost guarantee there's no autistic who's running around thinking that they're just having a normal experience. People let you know that you are different.

ELENA HUDGINS LYLE: Right.

JAM: A lot of autistics are even bullied as kids because we have different interests, different way of existing. I kind of always knew without knowing. And then people would find this embarrassing. I don't find this embarrassing because this is my special interest. But I like reading romance novels like a lot like I read one a day. I love romance novels.

ELENA HUDGINS LYLE: Damn.

HARVINDER WADHWA: One a day!

ELENA HUDGINS LYLE: Yeah, I'm like, impressed. I'm just such a slow reader that I'm like, damn love that.

JAM: I read a lot. It just makes me so happy.

ELENA HUDGINS LYLE: That’s great.

JAM: But that's actually how I found out I was autistic through a romance novel.

ELENA HUDGINS LYLE: Oh damn.

JAM: I was reading this book with an autistic character, and it was by an autistic author, and I was like, “Oh, that's so neat. Let me read this book.” And as I'm reading it, I'm like, Wow, that's so relatable, but I'm not autistic, so I'm not allowed to relate. Every single chapter, I’m like “Same, girl. Like we are living the same life. But you're autistic, and I'm not.”

ELENA HUDGINS LYLE: Wow, figures.

JAM: I know, so dumb. But I got to the end of the book and there was like an author's note, and she was talking about how she didn't get diagnosed until she had a child who was going through the diagnostic process, which is insanely common because women are wildly underdiagnosed. And so she's talking about what that experience was like, and she learned about the term masking, and she kind of explained the whole thing. And it like, full light bulb moment. I was like, hold on, let me look this up real quick. And as soon as I started doing some research, I was like, oh shit this is it.

ELENA HUDGINS LYLE: My gosh.

JAM: I figured it out.

HARVINDER WADHWA: And this was not too long ago, right?

JAM: This was last year. I'm actually coming up, tomorrow is the day that I started reading the book.

ELENA HUDGINS LYLE: Damn wow.

JAM: Weird, right?

ELENA HUDGINS LYLE: Happy anniversary!

JAM: Thank you.

ELENA HUDGINS LYLE: How did it feel making that discovery?

JAM: It was the single most liberating experience of my entire life. It was like, oh my God, I've been walking around blindfolded. And like, I had no idea where I was going. Turns out I could just take the blindfold off and I can live my life now with this new context and understanding. And it has improved my life in so many ways that I couldn't have anticipated because I, first of all, thought that everybody struggled like this. And if they didn't, then it was a personal failing of mine that I was struggling. To find out that no, it's a medical thing, it's like your brain is built in a different way. Like, my God. Amazing. I loved it. So happy for me.

ELENA HUDGINS LYLE: Love it.

HARVINDER WADHWA: Jam, do you mind sharing the struggles which you are talking about?

JAM: I had gone through my entire life thinking like I felt very much like an outsider, like I was an alien that was hiding and trying to make sure that other people didn't find out that I was an alien. There's everything from like your sensory issues to needing your routines to be a very specific way to what is called “social deficits” which I don't agree with. I think it's a weird way to talk about people who like direct, honest, linear, no nonsense conversation. Apparently, that's a social deficit if you just don't lie and tell people exactly what you mean. Certainly, I'm the weird one.

HARVINDER WADHWA: Sorry, Jam, I'm still not very clear of what those trigger points were like. You're mentioning about those social ones and the sensory ones. If you can be a little bit more elaborate, if you can elaborate a little bit more.

JAM: OK. So like, for example, if we're going to take a sensory issue, I have like really severe sensory issues around food, like when I was a child, if I had to eat scalloped potatoes or anything slightly wet, I would gag or vomit. If I had to take liquid medicine, my whole body would convulse with like panic and knowing that it was going to be a bad experience that I would like have a full meltdown. And then like, it wasn't until I found out I was autistic that your clothes aren't supposed to make you want to scream and punch things and faint. Like your clothes, touching your body in certain ways. I didn't know that, and it wasn't until somebody told me that's abnormal that I was like, oh, I'm having a separate experience than everybody else. Does that make sense?

HARVINDER WADHWA: Oh now it makes 100 percent sense.

ELENA HUDGINS LYLE: Yeah. And with that example, it's, you know, sometimes it can really shift your perspective. Seeing that something that you thought was totally natural is really just not the way other people frame it or someone with like whose brain works differently from you frames it like.

JAM: Yeah, exactly.

HARVINDER WADHWA: How do you find yourself socially different from other people you have mentioned about the lying, but anything else you would want to share with us?

JAM: So I don't naturally know how to just have a regular back and forth conversation. I plan every conversation that I have before I have it. Like, if you're on the phone, for example, you guys know when to say “Hello, how are you doing? How's your weekend?” I don't know when I'm supposed to stop asking those random questions that I don't, I don't want to know how my doctor's weekend was. Why am I asking you on the phone?

ELENA HUDGINS LYLE: You make some points.

JAM: Like that is expected of you. And I'm supposed to know when I'm supposed to pause and let them talk. I'm supposed to know when it's a natural conclusion to the convo. But you know what I mean? There's a thousand little things that are just not natural to me, and I can't figure them out.

HARVINDER WADHWA: Jam, this would be exhausting.

JAM: Yes, I'm very tired all the time.

HARVINDER WADHWA: Yeah. No because if I compare it with myself, because when I am going for certain meetings, which are with fairly senior people, I just plan a few things that, you know, this is how the conversation is going to go. Even that's exhausting for me. And here you have to plan every conversation.

JAM: Exactly.

HARVINDER WADHWA: Because you have to, because I have to be careful I don't say too little or too much, right? That's what the—

JAM: Yeah, yeah, exactly. And also, you learn from a young age as an autistic that the way that we naturally talk, which is usually pretty monotone and you don't like to make eye contact and you don't use your body in the same way that other people do. They're not met with good responses, like if somebody asked me how I'm doing, I’d be like, OK. Everybody else would say, I'm good. How are you doing? Do I need to know how you're doing? You asked me. My brain only goes to you wanted an answer to my question.

ELENA HUDGINS LYLE: Right, yeah.

JAM: Conversation over. So there's a lot of little things that we have to do that you learn from a very young age are necessary to get through the day. And unfortunately, it's very difficult and tiring and we get burnt out.

ELENA HUDGINS LYLE: We're talking in this episode about the question, “Are you sure?” Can you tell us about a time that you told someone that you're autistic and someone met you with this question?

JAM: Yeah. So every person I told before I got diagnosed.

ELENA HUDGINS LYLE: Oh god.

JAM: Which, some of them were not coming from a bad place.

ELENA HUDGINS LYLE: Right.

JAM: There's a lot of reasons why people would ask that type of question. I think first of all, we have this weird obsession with medical authority.

HARVINDER WADHWA: Right.

JAM: Where we think that doctors are the be all and end all of knowledge, and they're all unbiased third party characters who have no interest in things one way or the other, and they they will know above anybody else what the answers are. And so it's like, Oh, well, if a doctor didn't come to you with this information, you can't just decide it on your own. Who are you to say that you know what's going on in your brain? A doctor has to tell you what's going on in your brain. Then there's also people tend to speak on autism a lot without knowing very much about it. You'll say, “Hey, I'm autistic, or I'm thinking I might be” and they’re like, “Really? Are you sure? I don't think so.” And you'll be like, “Oh, OK, so like, what do you know about autism?” They're like “...nothing? But I feel like you can't have it.” There's like this weird need to like, gatekeep what autism is and who is allowed to be autistic. I think it has to do with a lot of ableism personally. It's weird. It's so confusing. Even my sister, who I'm very, very close to and she knows everything about me. Her first reaction was like, “Are you sure?” And for her, she was coming from a place of “Why didn't I notice this about you? Like, how did I not notice something?”

HARVINDER WADHWA: Yeah, but that's fair, though.

JAM: Yeah, that's absolutely, I understand that. It kind of took me back because usually she wouldn't have said something like that to me. She would have just been like, “OK, true, do you want to talk about it?”

ELENA HUDGINS LYLE: Right.

JAM: So it was kind of, not discouraging, but it made me just go, like, is this going to be every time I tell somebody? Am I going to have to do this over and over and over?

ELENA HUDGINS LYLE: Right.

JAM: And I think the one thing that people don't realize that question is asking is saying, show me your trauma. Show me your guts and all your hardest life spots and all the ways that you struggled. And then if I hear enough of it, maybe I'll believe you.

HARVINDER WADHWA: So, Jam, from your answer, it seems that you self-diagnosed yourself.

JAM: Everyone’s self-diagnosed before you do anything with the doctor.

HARVINDER WADHWA: Right. But have you also got a diagnosis from the doctor? For the record?

JAM: Yeah.

HARVINDER WADHWA: OK.

JAM: But I mean, if you—

HARVINDER WADHWA: No no, I was—

JAM: No, I'm not saying you. I'm saying like, this is a conversation I've had with other people. It's the weirdest thing when it comes to your mental health or anything psychologically, self-diagnosis has this weird like stigma around it.

ELENA HUDGINS LYLE: Right.

JAM: As if we don't call doctors by first trying to guess what's going on with us. Nobody's calling the doctor because they're like, everything's peachy keen. Can you check that everything is good for me?

HARVINDER WADHWA: Or you go to a doctor and say, guess what's wrong with you?

JAM: Could you just quickly poke around and see what's going on?

ELENA HUDGINS LYLE: I'm not going to tell you! Guess.

JAM: Medical mystery.

ELENA HUDGINS LYLE: I'm curious about how in the community, like, you know, online or with other autistic folks you've met, is self-diagnosis just, you know, accepted with open arms kind of at face value kind of thing? Like if someone's like, “Hey, I'm autistic,” people are like, “Alright.”

JAM: I would say 95 percent of the community is like, self-diagnosis is inherently valid. Like, you're in, you're good. You're autistic.

ELENA HUDGINS LYLE: Cool.

JAM: Because to figure out that you're autistic, it's not just like you read the diagnostic criteria and you go, yep, and then you're done. And you start walking around and saying, you're autistic.

ELENA HUDGINS LYLE: Right?

JAM: You start reading all these textbooks and medical journals, and you do every quiz you can find, and then you start compiling lists from every single person who's known you your entire life.

ELENA HUDGINS LYLE: Damn.

JAM: Like, we are doing the most, to be sure, because we're like, “Am I faking it? Am I lying? Am I doing something?”

ELENA HUDGINS LYLE: Right, yeah.

JAM: Nobody is going into it being like, you know what I want to try on today? Autism. That one doesn't have any stigmas around it. Nobody's going to infantilize you or potentially treat you like you're an idiot.

ELENA HUDGINS LYLE: Right, yeah.

JAM: And beyond that, it is very hard to get diagnosed as an adult. First of all, it's very expensive. So if you go to a private place, it's usually at minimum $1500. In the States, it's usually around 3000-4000.

ELENA HUDGINS LYLE: Woah.

JAM: So if you're lucky to be in Canada and have it covered, you have to wait a long time. I first got put on a list at CAMH [Centre for Addiction and Mental Health] and they were like, it's a two year waiting period to get in.

ELENA HUDGINS LYLE: Damn.

HARVINDER WADHWA: Two years!

JAM: Yes, and that's honestly like a pretty short period of time. I've seen people say four or five years or so.

ELENA HUDGINS LYLE: That sucks.

HARVINDER WADHWA: Oh my god.

JAM: And then if you're a woman, you're even less likely to get diagnosed because autism typically presents different in women than it does in men. Then you've got like any racial issues that you add in there, you know, blah blah blah. And then to cap it all off, the diagnostic criteria was literally made after studying some young white boys that are autistic. I'm a 30 year old Black woman.

HARVINDER WADHWA: Right.

JAM: I'm not playing with trains by myself in a dark room for six hours on end. I am reading romance novels for 12 hours in a dark room, for days on end. That is different. So if a woman goes in and is like, here's what I do differently than this little boy would do. A lot of doctors are like, well, it doesn't fit the exact criteria, you're out. Even though you're super duper autistic. It just is a different presentation.

HARVINDER WADHWA: Right. Wow.

ELENA HUDGINS LYLE: Yeah. Damn. Speaking of presentations and how people expect autism to present or to “look like”, what image do you think most people have in their heads?

JAM: When people talk about autism, they're talking about non-speaking, “low functioning”—we don't use that term anymore—people who also have intellectual disabilities, sometimes physical disabilities. Or if you’re like Temple Grandin and you're like a savant at something, then they're like, aha, that is the only other presentation of autism.

ELENA HUDGINS LYLE: Right, right. So if people see just someone who they perceive to be, quote unquote more or less normal, I can see why then they'd be like, “Oh, wait. So Jam isn't either like this super genius or this person who I perceive to be really low functioning. I perceive Jam to be a “normal.””

JAM: Exactly. And that's one of the big reasons why we don't use functioning labels anymore. First of all, they actually have a really horrible history. They were from the Holocaust, and it was how autistics were separated and decided who was worth living and who wasn't. So it's not a great start, a great place to start to begin with. And then beyond that, people took the term spectrum in autism spectrum and they went: linear.

ELENA HUDGINS LYLE: Right?

JAM: You were either closer to one end or closer to the other when it's not. It's kind of like a sphere with multi colours and it's all over the place. For me, I am a “normal” looking person, but like, I can't really cook for myself. I most of the time need my sister to take my phone calls for me. There's a lot of things that I just can't do.

ELENA HUDGINS LYLE: Right yeah.

JAM: I'm sure I could force myself to do them, but then I would probably have a shutdown for a week. But that doesn't make me high functioning. I'm not functioning well.

ELENA HUDGINS LYLE: Right, right?

JAM: Like that's not ideal. So putting those labels on people just doesn't make any sense. And you're not actually helping anybody by using those labels, you're not identifying where they need support. So what's the point?

HARVINDER WADHWA: So I think I understand. But I still like to ask this question. Do you think asking an autistic person, “Are you sure?” is an inappropriate question?

JAM: I mean, why do you need to know? Kike, yeah, it is kind of inappropriate. Like if you really want to know where this person like, how this person came to this conclusion, there are other questions to ask. I've had good experiences with telling someone that I'm autistic and I've had negative ones. The negative ones typically start with, “Are you sure?” The positive ones were like, “Oh my gosh, how did you figure that out? Wow. Can you tell me more? What was it like? How has that changed things for you?” You are getting the same answers, but in a different way, and I feel different sharing that information with you. If you want someone to close off and be like, well now you're not a safe person, then sure, you can say, are you sure? Roll the dice. See what happens.

[Music]

KIT HORNBY: My name is Kit. I don't get the question “Are you sure?” a lot because I was professionally diagnosed, which I am very privileged to be able to access. Being able to say that, you know, I have been diagnosed by a professional does get me out of that question a lot. I mean, when I tell people I’m autistic, autistic people get infantilized a lot and people will, like automatically talk down to you. I worked at a crafting store. Basically, I would like sometimes have struggles that were like definitely attributed to my autism, where I would like not make eye contact. I would like not be able to process all the things people were telling me. We had lots of great customers who were very kind and understanding, but like, there are lots of people who just get angry. So my solution was I should make a button that says “I am autistic. Please be patient” on it and just wear that around the store and people are usually very good about it and it was really nice. And then one day my boss comes in, he's like, “Oh, hey, we got a call about your button” and I'm like, what? And so apparently somebody had called the store and asked my boss, “Do you make her wear that?” Which ties back to the infantilization thing, like instead of like just asking about it this person thought I was being forced to, because who on Earth would admit they're autistic? I'm OK with talking, I feel like if I wear the button, the signal you're supposed to get is, “Yeah, we can talk about this”. This is a quote from Ted Lasso, but it's actually a quote by Walt Whitman. “Be curious, not judgmental.” If somebody is doing something you don't understand, maybe like being curious. If you see me like waving my hands or stimming in a way and you're like, “Oh, that's weird.” Just please stop and think, like, “Oh, that person's doing something I don't understand. But they're not hurting me and they're not bothering anyone. So why would it be an issue?” Instead think, how can I help? Just accommodating people and their unique needs. It might take a little lecture time sometimes, but like it's just the right thing to do.

[Music]

ELENA HUDGINS LYLE: Our next guest is here to bring us a broader perspective on autism. Sara Acevedo is an autistic, mestiza woman and an assistant professor of disability studies at Miami University.

HARVINDER WADHWA: So from your personal and professional experience, how would you define autism?

SARA ACEVEDO: Oh, that's really loaded. That's a loaded question. OK, I'm going to talk about it from the neurodiversity perspective. If people have not heard about this perspective, neurodiversity is the idea that all of our brains are wired differently. Autism is one of the ways in which our brains are wired differently, it’s just a manifestation of that. It's one of those neurodivergences.

ELENA HUDGINS LYLE: Right.

HARVINDER WADHWA: So if I understand correctly, there is not anything wrong with being autistic, did I get that correctly?

SARA ACEVEDO: There is nothing wrong and there is nothing right. I mean, it's just, it's a matter of being in the world. But we are very clear, I would say, about the fact that autism is not a disease, but autism is a disability. Disability is, you know, impairment in the body when it meets barriers in the environment. It’s not really the body where the problem is, it’s actually the barriers in the environment, as well as attitudinal barriers and institutional barriers as well, to everything. To being able to do everything as other people do. That's where the disability is. It's not necessarily in the body.

HARVINDER WADHWA: So just to understand, is there something which people with autism find it difficult to do? As opposed to, and I will use in air quotes the “normal people” or non-autistic people. I don't even know if that is the right term to use.

SARA ACEVEDO: The large majority of the autistic community largely prefer identity-first language. So we wouldn't say “person with autism” because we do not consider that autism is something attached to us, but that is something that we are, that we embody, that we are fully. So we prefer identity-first language, so we use “autistic people”.

ELENA HUDGINS LYLE: Right.

SARA ACEVEDO: So just to clarify that, that's a big thing for us. So yes, there are things that autistic people struggle with, and I can't necessarily tell you what those things are because there's a saying or there's it's a common saying in the community. When you meet one autistic person, you've met one. We're all so different. But I would say, you know, there's a lot of things that that I would say we share and that is mostly our sensory system is like amplified. So let me give you an example. My hearing is amplified to a degree that is just wild, right? So it's as if I had one of those megaphones in my ear and when an ambulance goes by or a fireman’s truck, it's awful. Like, I have to cover my ears. So have you seen like images of autistic children wearing things like this that I'm wearing, noise canceling headphones?

ELENA HUDGINS LYLE: I don't think I have actually.

HARVINDER WADHWA: No, I don't know. I am, because half the world is nowadays wearing headphones anyways, right?

ELENA HUDGINS LYLE: We're all wearing headphones, right.

SARA ACEVEDO: Yeah. But that's because certain people cannot even tolerate noises of like the environment. I'm not at that level. But for me, stringent noises are really, really painful.

HARVINDER WADHWA: So Sara, you have spoken about some characteristics of autism, or autistic people. By extension, are there any things that are positive, extremely positive about autistic people that are—when I'm using the word “positive”, I'm using air quotes in the sense that they can do it better than people who are not autistic.

SARA ACEVEDO: Yeah, I mean, I'll be cautious with this because we should not use our talents and skills to say, “See, I told you. Autism is great.” That throws other disabled people under the bus. Because we say, oh, I'm perfectly fine. My brain is fine, OK? I'm here. I'm super smart, OK? What does that say about people with intellectual disabilities? They're part of our disability community. I say that we have certain talents that have contributed to a lot of developments in humanity, but that whole idea of the gifted and the savant, there's a lot of danger there. I don't know if you know the connections between Hans Asperger and, you know, the savantry and the Nazi project. So all of that stuff, we really have to, I think we have to be really careful with stuff like that just because that's also romanticizing, you know, how they put it in the films that, like the numbers come at you?

ELENA HUDGINS LYLE: Right so like in Rain Man with the 3D numbers?

SARA ACEVEDO: To me, that's just like an idealized, kind of like fictionalized way of showing it. That's cool, but I don't know that that's true. That's also romanticizing autism in ways that really do a disservice to the entire community. Because while we're focusing on that, we are neglecting that autistic people are underserved. There are very little funds, a lot of people go undiagnosed. People go through a bunch of hurdles and barriers to get their needs met in terms of services, good quality of life, in terms of education. If we're really thinking about savantry as this wonderful thing about autism, we're really missing the mark completely.

ELENA HUDGINS LYLE: When people ask autistic folks, “Are you sure?”

SARA ACEVEDO: Yeah.

ELENA HUDGINS LYLE: What do you think's behind their curiosity or urge to ask this?

SARA ACEVEDO: You know, I think there are different motivations. When we talk about bodily difference and mind difference, simply because difference is something that attracts curiosity, human curiosity. It’s just—

ELENA HUDGINS LYLE: That's kind of the centre of our show, basically. That's all we ever talk about.

SARA ACEVEDO: Yeah. And you know, I was trained as a cultural anthropologist. So, you know, if you think about that in terms of the threat that autism poses to social and political structure in terms of certainty, control. This puzzle, this enigma. It is, I feel, like an anxiety. Like an anxiety of not knowing what is that that I don't recognize in me.

ELENA HUDGINS LYLE: Right, OK. So people are just, they don't understand it and they want to feel a control over it.

SARA ACEVEDO: Well, think about it. Why do you think there is so much like scientific effort put into trying to find the “autism gene?”

ELENA HUDGINS LYLE: Right.

SARA ACEVEDO: It's not even to get to know it, understand what it is, harmoniously coexist. No, it's to have a hold on it and then destroy it.

HARVINDER WADHWA: Right, right.

SARA ACEVEDO: It's to find a cure, to get rid of it. The medical scientific community doesn't even understand it as a part of us. It understands it as this attachment. And that's why they use person-first language, “people with autism.” Because they think they can just remove it from us and just get rid of it.

ELENA HUDGINS LYLE: Right.

HARVINDER WADHWA: So, Sara, instead of asking, “Are you sure?” is there something better that people should ask?

ELENA HUDGINS LYLE: Is there, is there a good question here or are we just going no questions?

SARA ACEVEDO: Yeah, I would say if a friend ever approaches you or a loved one or someone in your life who trusts you enough with information that's that private and that important in their life. You know, saying “And how does that make you feel?” or “Was that helpful? What does that mean to you?” Just know what your friend or your loved one is feeling and thinking about instead of questioning your friend. You know, instead of like trying to probe.

ELENA HUDGINS LYLE: Right.

SARA ACEVEDO: Which is, trust me, your friend is already doing to themselves a hundred times over.

HARVINDER WADHWA: Right.

SARA ACEVEDO: You know, just validate and support that person who's sharing something so important to them in their life. Would you like me to offer support? Would you like me to not offer anything at this moment? What would you like me to do? Is like one of the most accessible ways of communicating to your friend, I'm here for whatever you need me to be here in this situation.

ELENA HUDGINS LYLE: Right. Yeah.

SARA ACEVEDO: You know, like sharing that intimacy and giving that person that space to actually decide what they want you to do with the information they shared with you is one of the best ways, I think, to interact.

[Music]

HARVINDER WADHWA: So in this episode, I have learned so many new things, like the social anxieties which autistic people face. Also the heightened sensory experience, if I could say that?

ELENA HUDGINS LYLE: Yeah, for sure.

HARVINDER WADHWA: Very interesting in how these things can be so challenging for autistic people.

ELENA HUDGINS LYLE: Yeah, I really loved Jam’s explanation of how, you know, being autistic is not something you could measure kind of on a scale. How it's about these different, like you said, sensory and social experiences and how you are not more “high functioning or low functioning.” There's different things you experience at different levels. It reminded me a bit of when my brother was little, and people assumed that his autism would make it hard for him to express his emotions or to be social. But nowadays he's really social and like very in touch with his emotions, which is, I think, not the way people expected.

HARVINDER WADHWA: I also really learned about because of lack of medical support, the community has efficiently managed to self-diagnose and support each other.

ELENA HUDGINS LYLE: Yeah.

HARVINDER WADHWA: Which I found was absolutely fascinating.

ELENA HUDGINS LYLE: Yeah, it's really lovely. And I found it made a lot of sense that they do that, given that diagnosis isn't always accessible.

HARVINDER WADHWA: So, so this episode had a unique quality. I knew the question was inappropriate, but I did not know why that question was inappropriate. So this episode clarified that!

ELENA HUDGINS LYLE: So half was right, but he didn't know why.

HARVINDER WADHWA: Absolutely. Absolutely.

ELENA HUDGINS LYLE: You've been vindicated.

HARVINDER WADHWA: OK for once!

[Theme]

HARVINDER WADHWA: I'm Harvinder Wadhwa.

ELENA HUDGINS LYLE: And I'm Elena Hudgins Lyle.

HARVINDER WADHWA: Thanks for getting inappropriate for us.

ELENA HUDGINS LYLE: Huge thanks to our guests, Jamila and Sara Acevedo. You also heard a voice note from Kit Hornby.

HARVINDER WADHWA: This episode’s accompanying webcomic was illustrated by Rebecca Burgess. You can find it on Instagram @IQ_Podcast. Also, make sure to visit cbc.ca/iqpodcast for a full transcript of this episode.

ELENA HUDGINS LYLE: The best buds behind this podcast are Sabrina Bertsch, Cindy Long and myself. This episode was mixed by Olivia Pasquarelli. Our chase producer is Sarah Melton and our digital producer is SK Robert. Our senior producer is Geoff Turner and our executive producer is Arif Noorani.

[Theme out]

ELENA HUDGINS LYLE: An inappropriate question is like your older co-host knowing more about TikTok.

HARVINDER WADHWA: I was there only for one month.

ELENA HUDGINS LYLE: OK, that's longer than me.

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Transcript: Inappropriate Questions Season 3, Episode 14

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