Introduction: Hello, fellow podcasters. Welcome to this podcast where we discuss various topics around neurodiversity and Autism Spectrum disorder, with self advocates, program directors, and occupational therapists, families, and clinicians. I hope you enjoy what we have in store for you today Jessica My name is Jessica Pigeau. Jessia (french). I'm originally from Alberta but I live in Vancouver, British Columbia now. I'm 30 years old. I am a stand up comedian. And I also spent some time in academia. I also have autism. That's my relevant credential here. I've traveled the world alright and I have autism. That's the vital question at hand. Clara Thank you. Jessica, what is your favorite TV show or movie? This is a very morbid answer. My favorite television show was the 2013 series of Hannibal, which is an adaptation of both Hannibal, Silence of the Lambs and the Red Dragon. I'm a big fan of Nicholson's acting ability and cannibalism. (Laughs) Probably shouldn't put it like that. Big fan of Hannibal. I've never watched it before. I’ll note it. It's a very sort of baroque, gothic take on the police procedural genre. I liked it a lot. And my roommate found it sickening. I've always found that autistic people are more likely to have a certain resistance to gore and could also be hypersensitive to it. But part of it is just the fictional-not-registering-as-viscerally when it comes to pretend McCobb violence. It also is just very interesting philosophically. In particular, the main character is neurodivergent; he's not autistic, they sort of avoid the question of a particular diagnosis. But he specifically has a hyper empathy that causes him to withdraw from people in ways that I found very thematically?? similar to what Autistics go through, with the world being chaotic and overwhelming and feeling the need to retreat due to not only the lack of interest but excessive stimulus. Right. I love that explanation. Thank you. Also there's murder. Next question: is there one thing that you want people to know about you? One thing that I want people to know about me? I don't know what I want people to know about me. Mostly what I try to communicate people with how I act, and how I dress, how I am in general is that I am harmless and friendly. You know, I've never wanted people to feel intimidated by me or scared of me and I know that I can be intimidating for a variety of reasons, mostly starting with my vocabulary and work gorgeing on down? I think the thing that I most want people to know about me as an adult is that I am and I've always been incredibly open minded and heterodox and I think people have a tendency of just assuming my opinions before I state them. Based on how I look and the kinds of words I use. And I just need that more people in general should be aware that no person is entirely one way or another and that most people who are thinking do not have a completely homogeneous ideology. If you agree completely with one school of thought, it's probably because you're not thinking. I resonate with that. Yeah, but that's very true. You're so well spoken I want to write it down and save it in my quotes book. I am a severe victim of autistic over-articulation. I always feel like I'm never being specific enough so that I just explain everything to death. Honestly, that's a really good way of getting what you want to get across. Make sure people know what your intentions are. So next question, do you have a preferred term? Like self advocate, an individual with autism? Autistic individual? This is always a tricky one for me, because I have a language background. And I would say that I think we overly focus on exact terms when it comes to what is an appropriate way to dress somebody. You know, the entire ‘autistic person versus person with autism debate’ I think has many passionate advocates and has its own value as a conversation, with many people who prefer ‘autistic person and self advocate’ being people who want to normalize their autism. They want to be an autistic person the way that I'm a brunette or I’m Catholic. They don't want a kind of distancing language that can result in us trying to humanize certain people and distance them from the stigmatized condition they have. And on the other side, you have caretakers parents who, compared to the average self advocate, are taking care of somebody who's far, far less capable of taking care of themselves. And for them, the importance of emphasizing the humanity of the person they are looking after is paramount. But what I would generally say is, we focus too much on language, when, generally speaking, language does not affect views. You cannot teach someone to expect autistic people by being careful about language. You can only sort of freeze them out of the conversation. So what I would say is, rather than having any particular language that I like, I accept anything I'm called coming from a place of respect. Wow, that's a great answer. Thank you for that. Okay, those are all the opening questions. I think we're going to jump into the first timestamp of Good Doctor. Okay, so just a couple questions. Can you recall a particular time where communication was a barrier that you had to overcome? Yes, always. Communication has always been a barrier that I had to overcome. It's not obvious from the way I talk right now, but I have pretty severe speech impediments. I have since childhood. I've learned to talk around them. I naturally have what is known as a frontal lisp. That happens because the tongue is positioned in the wrong place when it nearly touches the teeth. So I had a very pronounced lisp when I was a child. I still have it when I am tired or stressed right now. I also have a bit of a lateral lisp, when the air comes over the side of the tongue, and that tends to come out whenever I'm distracted or explaining something. I also have what is known as temporary mutism, which is a condition mostly found in children with anxiety. I still suffer it as an adult, and basically what it is, is that when I am emotionally loaded, I lose the ability to talk sometimes for several hours. To the point where in my teens, I actually knew quite a bit of sign language because it was an easier way to communicate with another. And if you could understand basic things such as ‘I’m hungry’ or ‘I’m tired’ or ‘I need to be alone right now’, I could communicate that through sign language. I have always struggled to express myself, especially when it was most important to, because I find these kinds of situations very overwhelming. I often shut down in basic everyday situations. When it happens while I am at the store and someone talks to me suddenly, or when trying to answer a waitress under pressure. And I've had a stack of restaurants flip out at me and get angry with me, because it wasn't able to talk. And there's a very basic assumption that we have both that the way that someone is capable of [to be] consistent over time, like we expect if somebody is able to hold an intelligent conversation on Monday, they should be able to hold an intelligent conversation on Tuesday. So failures of that kind where once someone is able to talk then simply stop talking, we tend to see that as obstinance and refusal rather than a sudden loss of ability. But likewise, we have this conflation of intelligence with the ability to express. We see speech and fluency of speech as intelligence in many ways. We often portray stupid characters on television as ones that are inarticulate, or very much have speech impediments. But the reality is that someone can be much smarter than their ability to portray themselves. I'm sorry that those incidents happened, where people flipped out at you. I mean, I also had tons of people mistake me for deaf and then were just very nice about it. I had some very, very more nice people more than not who were like “Well, [she] is clearly not capable of talking. I'm going to mouth everything” and I’m just like “I’m going to need you to say that out loud for reasons.” They were very kind though. So what do you think should be done to reduce communication barriers between neurotypical individuals and those with ASD? I mean, it kind of reminds me of the difference between a dialect and a language. It's partially a matter of linguistics, but it's also to a heavy degree of politics. So there are languages that are considered separate languages that are still basically mutually intelligible, meaning someone who speaks one understands the other. So there are plenty of those that are considered separate languages. So the example I would point to is Danish, Norwegian and Swedish. All of which you know if you’re a swedish person you can understand Norwegian and Danish and vice versa. But those are separate languages because we associate them with separate countries. Then there are languages like Mandarin, Chinese and Cantonese Chinese, which are way more different than any Scandinavian and any of these three Scandinavian languages, but are still considered to be the same language. --- Right. And because of political reasons, and when you sort of look at how neurotypicals think, and how Autistics think and how they communicate, part of the issue is usually when there is a uneven mutual intelligibility, such as what happens with Spanish or Portuguese. So Spanish and Portuguese are very similar, not completely the same language, but they are very similar. [16:13] They are in between the Scandinavian languages and Chinese languages in terms of who understands who. But Portuguese people understand Spanish way better than Spanish people understand Portuguese. This is for a simple reason. They have more exposure to it. And something very similar happens with Canada US, like Canadians understand American politics much better than Americans understand Canadian politics. And so part of the issue when we're talking about what can people do to understand autistic people. Part of it's just being more familiar, part of it is not only interacting more with Autism as a concept, but also increasing the ability to recognize it, and people you already know that you can sort of have it as a paradigm, where you recognize it in the future and respond accordingly. So it's partially just autistics have far more experience understanding neurotypical people than neurotypical people do understanding Autistics. Autistics as much as we talk about not having quite the same capacity, or quickly learning social skills that people do, they nonetheless understand each other quite well. And that's because of a fundamental similarity of mine, but also a certain familiarity of mine. So, you know, it's not possible for a neurotypical person to just be more autistic. That's not useful advice to that. But increased familiarity, such as you know, watching more television shows that have explicitly autistic characters can really help neurotypical people pinpoint how autistic people communicate, and what strategies work best for that kind of inter neurological communication. Yeah, I’m just saying that's like, that's really great advice on that individuals with ASD definitely have more exposure and know how to deal with neurotypical individuals, whereas the other way around, definitely lacks familiarity. So, yeah, thank you for that. That's such a great answer. I think that's everything for that scene. The next scene is episode seven of season one. So how do you think the general public perceives individuals with autism? And do you think it's changed over the years for better or worse? I think there's a gap between how people perceive...I think there's on a basic level neurotypical people perceive autism, more than they once did. Partially due to increases in awareness of it, but also due to the expanded definition that came in 1994. My joke tends to be that I wasn't autistic until I was four the meaning being that that was when the expansion of term came when I started realizing that there wasn't actually this discrete singular condition analogous down syndrome that we were calling autism, but rather that it was a spectrum of traits that were highly variable among individuals. I think that can be shown by a whole diagnostic standard, where we basically had like, three different catch all terms and also a separate catch all catch all, BDDNOS Pervasive development disorder not otherwise specified. We have a broad spectrum of like we had several different broad spectrums, and also this atypical autism diagnosis. Which revealed that we really did not know enough about autism to try to make refining it more particularly, more specifically. So I think that there has been a huge shift in how people perceive autism. I will say that it's largely positive. But there's still very much a gap between what people recognize as Autism, and what people like have been socially trained to respect, to take care of, to be kind to and more a-typical/subtle and the most severe expressions of Autism. What I mean, in the first case, one of the very, very subtle traits of being autistic is often the kinds of social behavior that we very much make fun of that we socially derived can be, in fact, autistic, it can be very autistic. And you can see this in all attitudes towards a nerd culture. And we used to see the nerdy as is incredibly awkward, incredibly, socially inept thing. So early nerd culture is predominantly autistic and ADHD in terms of its social norms, where extremely odd extremely pedantic behavior was not only seen as normal but valued within these these niche communities. As ‘nerdity’ has been mainstreamed, more neurotypical people have latched on to it and taking it up, it has both become some space for normalizing certain autistic behaviors, but also pushing into what was once a pseudo safe space for autistic people and other neurotypical social expressions. So I think that there's often a case where, when somebody is socially inept but not explicitly labeled, they can end up still getting bullied for these behaviors, because there is a gap between we've normalized the idea that you should be respectful towards obviously disabled people, but we still have not translated that completely into an understanding that you should normalize these behaviors and these behaviors should be acceptable, or the very least not openly mocked, no matter who has them or why, because you will not know it because you will not necessarily be able to spot a autistic person when you see one, but also because it's okay for people who aren't autistic, you have weird awkward obsessions, that's also fine. You shouldn't need an explicit label to treat someone like a human being. And then there's this other end of things where we sort of develop this part of the problem like it's such a broad spectrum that you have people with vastly different interests. But we have this I mean, I've heard it sort of referred to as the ‘Super crip stereotype’ within disabled circles, which you know, can sound a bit disrespectful but that's, that's a term that we use amongst ourselves when we're being blunted, blind to social norms. And so sort of refers to like this like Sherlock Holmes, or the Good Doctor, where disability is seen as sort of this mild superpower, where this person is able to overcome a lot of deficits through this, like hyper skilled almost savant aspect of our lives. And I think that these are very real narratives, where there are a lot of disabled people who and especially neurotypical people who, by the very nature of their divergent neurology are capable of making unique contributions to various fields, because they think differently from the people around them, they take different steps at problem solving, and they can end up being uniquely valuable. But that's also not the vast majority of us. And when we overly rely on this idea of “ disabled people are capable of doing even more than non disabled people” you can end up accidentally reinforcing a narrative that it is only through this additional value to society that we are justified in taking up space. And the reality is that some people with autism can never contribute more to society than they take. This would be a reality for some disabled people. And we need to have a robust defense of the right to be within society that does not rely on them paying us back in the end I completely agree. Yeah. Thank you. Next scene is at nine minutes and 40 seconds till 10 minutes and 40 seconds in the same episode. So have you ever experienced something similar or any similar challenges with patient care? Well, I don't know if I've ever been in a situation where I couldn't calm down to the point where medical intervention became difficult. That being said, I did have asthma as a very young child. And apparently when I was two years old, they stuck me in a tube in order to examine my lungs. Apparently I screamed the entire time. That's the expected from a very young child. It was hard on my mother. That was not Autism-specific, I don't think Right But you run into a lot of these issues, interacting with medical care. I never had problems with doctor doctors. I never had an issue with those kinds of things. Like GP’s etc, because my mother when I was very young, and I didn't have much control over to express myself, my mother was always in charge and my mother, like she's not the term people have been using Karen. She is not your classical Karen. But you know, she still is a white, middle aged white woman and you still get a, I believe, a classic bonus in relentless haranguing, and so she could just turn it on, the drop of a hat. She was very good at pushing past people who thought I didn't need medical attention or people who were resistant to actually inspecting me and seeing what was wrong. When I was older, I started to run into issues with psychiatrists. Specifically, I had difficulty convincing them that I genuinely needed a diagnosis, not neccessarily of autism but of other things. It was difficult to get them to take you seriously. And part of that is when you're patient and you already have preconceptions of what you have and etc, etc, even if they're coming from what previous doctors have told you. When people are experts in your field, they can be a little territorial, arrogant, I don't know. But there can be people who are used to being the expert people, who are used to being the one in charge, they can be a little condescending, especially to people who have previous mental health diagnosis. And that's usually not intentional. It's usually not a conscious desire to minimize your problems. But it can be an issue where the average doctor by definition is somebody who has not had the maximum amount of problems in life. So they can lack the background to be sympathetic and empathetic to somebody with severe mental health issues. Or they can by bias assume that you are irrational. So I once had a psychiatrist who was... Normally there's a problem where when people receive therapy, they can become overly dependent on therapy, because they are so relieved after and so happy after coming out of a of a therapists office. There's this good catharsis that happens. It is normal to feel better when coming out of a therapist's office than worse. I had a psychiatrist who made me cry three times. Oh, my goodness And psychiatrists are not therapists. They are medical doctors with two years of psychiatric rotation. If you want to Therapist you go to a psychologist and will usually have a Mastesr in Psychology which is, you know, six to seven years of mental health training. And I had gone to the facility that had recommended me to her and I was just like, I need a referral, like right now. Every time I mentioned something I was doing. I mentioned I working as a translator, I was mentioning, you know, enjoying stand up comedy as a hobby, which is something I get paid for. That's something I now do professionally. And she would just dump them on those kinds of things. Like they were stupid or irrational and that they weren't worthy of my time maybe that I wasn't good enough with no experience that my ability to tell jokes, no, no relevant experience on my ability as a translator. She would just be utterly dismissive, and she would draw me specifically into conversations about those topics which I would not want to talk about Now I want to talk about I wanted to query ADHD I wanted to know whether or not I should be on?? And she spent a large portion of our time together just ripping into my personal passions, which is very hard as an autistic person, they're incredibly important to me. And after I asked for a referral, they're like, “Oh, well, it's gonna take you four months to get another person.” Don’t care. I want a referral. You should not feel destroyed after an appointment with a medical professional. It's one thing if they're like, you have cancer like okay, you'll you can feel devastated by that version. Just be like hi on your occupational therapist, your dreams are [censor] And afterwards, she called me personally and tried to harangue me and bully me into coming back to her sessions. So you can end up in situations as an autistic person, where you get bullied into medical treatment you do not want from people who feel like you will just give in because of your psychological frailties. Yeah, like I am somebody who is easy to bully I am somebody who is a bit of a doormat. It is not hard to get me to do something that I don't want to do. I mean up to a point. I am a very good comedian. I got paid money a couple of times. Other times, other times about (spanic appita?) Excellent greek food. I know you can see me while you were talking about that psychiatrist, but the whole time I was just shaking my head and I was like, this is so ridiculous. I'm sorry that you had to experience that. And I think there's lots of good doctors out there. There’s a vast majority of them Yeah, yeah, totally. Definitely. It's just a very vulnerable position to be in, it’s a position of power for a reason. Totally. Yeah. Thank you. For sharing that story. The next scene it is still saying episode so about 19 minutes and 35 second So what does a connection to the ASD community mean to you? What do I feel about my relationship with other autistic people? Yeah, like having that connection to that community help you? Are you involved in the community? Yes and no. Like it did help me a lot when I was younger. And I think the internet in a lot of ways has allowed what is a naturally very geographically diasporic and spread out unity actually have communications actually have culture within them. I wouldn't say however, that I tend to socialize more so with Autistics than I do other people, or that I tend to specifically seek out autistic spaces. What I found rather is that I tend to find Autistics everywhere I go. So a lot of my best friends in university had Autism, a lot of my best friends in comedy now have autism. And I sometimes wonder, if it's that we're attracted to the same things that we we go to the same places like the debate societies and comedy clubs, or if it's that there's a certain number of autistic people everywhere, and we have a tendency to find each other out of a certain mutual understanding. My best friend calls it 'spectuition’, the autistic version of gaydar. So I would say that I read a lot of autistic literature, I read a lot of autistic in News Reports, Academica, etc. That my relationships, specifically groups for people with autism is somewhat narrow. Okay, it's obviously, it's one of those things I also found with the queer community where gay is a personality type. And it's not a common interest. So, if you want to make queer friends, you need to find queer friends who actually have the same interests as you. Yes, I would say that one of the reasons I don't predominantly socialize with the Autistic community, per se, and one of the reasons I find myself in non autistic spaces alongside other Autistics, is because those are autistic people who have an interest compatible mind. And we live now more so in an age where one can be openly autistic, or one can be unabashedly autistic. And even if you don't suppose to call yourself that, you can behave in an autistic manner in public and still be socially accepted and embraced. So I have found it. Not necessarily that I engage a lot with the Autistic community, but that the Autistic community is more visible now than it was when I was a child. And we're experiencing a reversal of that thing that always happens in every elementary school, where there's tons of other disabled kids in your grade, kindergarten, grade one, but one by one, they start slowly disappear from our social lives as they get shuttled off into more specialized programming for entirely understandable reasons, usually. But that nonetheless means that our social space as teenagers becomes gradually pruned of disabled influences. Meaning and I think that's genuinely one of the reasons why a lot of adults have trouble socializing with obviously disabled people, is because we stop being socialized in our interactions with specially moderate and severely disabled people at a very young age. That leaves us with only these very rudimentary tools for engagement. So I would likewise point that there is this broader community of neuro-atypical people that I think have made common-cause with people with autism, that I've likewise found myself socializing with more and more. I have tons of friends with ADHD, and one of my closest friends actually has borderline personality disorder. And I think that there are lots of little ways that every one of us sees these people in everyday life, and they can be very enriching once we learn to open up engage. I have no idea if I've answered the question. That being said, as a reflection of the particular clip, I do kind of get this sort of feeling of like, watching another autistic person and feeling very uncomfortable. That's something I experienced. And I would say that it's comes from this deep place of empathy to be honest. Where I will feel such strong secondhand embarrassment, watching somebody do something that I would absolutely do. Versus like, oh, there's like others, and there's like an anger there. But it's not about them. It's about you. That you are you are too similar to me to be doing that. I think your answer to the question totally makes sense, not in specific to the ASD community, but you have your own interests, and there's a big population of people with ASD and you find them there, instead of just trying to dive into the ASD community. So the last scene of Good Doctor is 27:35 What do you think about the statement: “He has autism, same as her son, same limitation.” I think that's a common assumption. I think that the average person has a pretty basic mental model of what illnesses is, and that illnesses, regardless of severity, are analogous. Like, there is the old saying, you know, if you've met one person with autism, you've met one person with autism, and that is insanely true. The reality is, when we're talking about autism, we are undoubtedly, even if we cannot make distinctions, talking about a wide range of fundamentally different conditions on some level, that all have very similar outcomes. And I think this is the logical we apply to a lot of different conditions. This is the logic we apply to, like everything from autism to ADHD to like bone spurs. We tend to group things like ADHD like nearsightedness, like bone spurs into soft disabilities, and non severe disability. And we tend to group like autism in sort of a moderate range, and we tend to generalize, especially from what we have previously seen. And the average person does not know that many Autistics, they do not know that many people with ADHD. They definitely met a whole bunch, but having it's very rare to have that many close personal relationships with somebody who you explicitly know they have this condition. It’s going to be more common, but it's still very rare. And it is entirely understandable for the average person to extrapolate from the one or two instances they know of a particular condition. And to extrapolate that into their engagement with the condition everywhere else in life. It makes sense when you only have so many examples of something to prioritize your own anecdotal experience of what something looks like. You know, I can say personally, like, I know many people with ADHD because it runs in my family. There are people like my younger sister who are, you know, they force themselves to be very organized. They have to be on medication, but it's not really a big deal if they don't take it one day. And I also know people like my boyfriend, who, every once in a while I will show up at his house. He will be in the middle of his study completely naked. We will hold an entire conversation and then he'll look at me and he'll ask why am I naked? And it's the sort of interaction that if you had that with a 90 year old person you would have assumed dementia, where he will forget what we are talking about four times within the same conversation, if he is not on his medication. So I think it's a very natural tendency, because the world is big and complicated, and because there is too much for any one mind to fully understand. It is very reasonable to try to understand the world in broad heuristics that take the weight of cognition off of us. What's important is actually to give people multiple examples of this. So that and like this word examples, we don’t have to get on like this, or that depiction of autism, the stereotypical, not every autistic person is like that. Here's the thing, it's okay to have some stereotypical elements in any one depiction of autism, because no one person is going to completely diverge from every single stereotype about their group. That's absurd. You know, you need to just have enough depictions, with enough variety within them in order to disabuse these this kind of stereotyping, unmalicious stereotyping. Like I myself, have been on the receiving end of like some fairly condescending behavior because of my autism diagnosis and from people who very well know that I'm quite smart. It's just a natural tendency, given the simplicity of the human mind, which is still incredibly impressive as a computer. In the complexity of reality, people make assumptions, people have stereotypes. The question is whether or not we get nuance into their media diet and into their interactions. Yeah, totally. There's a follow up question, but I think you've pretty much covered it. Well, I'll just repeat it in case you want to add something. Do you think that the experiences and challenges faced by individuals with autism are similar or different? And what ways? Are they similar or different? Do you have any examples? Yes, they're similar and different. I would say that while a lot of Autistics experiences can be analogous, where you come from really has a big effect. But people often mentioned that they're like, oh, you know, I would describe you as very autistic, but at the same time, like very functional. Which is to say, like, when people say that I have mild autism, they don't mean that I'm not very obviously autistic, they just mean that, you know, like, I can go to the store by myself and I can drive a car. Which is, I think what they're kind of getting at is that you can be very, very distinctly autistic, and still have had the resources and support you needed in order to be very functional. And one of the interesting things for me when you're looking at older autistic people, is that it's very hard to separate from our definition of what autism is, the symptoms of being just baseline autistic. It's very hard to separate those out from what are the symptoms of being a traumatized autistic person. Because there are a lot of, especially older autistic people who the nature of their condition led them to become victimized or led them to become neglected, or led them to experience extreme stress early in life, or prevented them from maturing or developing in very key ways. So when people look at someone like me, and they say, like, oh, well, you're very functional. I'd say, well, yes, I had an extremely [censored] family. I grew up in a situation of full throuted support, very loving, very caring. Even if I wasn't diagnosed for a very long time, there was a certain understanding that I was different and I was accommodated. So I would say the things that Autistic people go through are not different from what neurotypicals go through in kind, they are different in degree. Neurotypical people experience loneliness. Neurotypical people experience bullying, neurotypical people experience social awkwardness, and experience obsession. The autistic condition is just a variation of the human condition. And the problems with Autistic face are the problems that human beings face. They are just to a degree that we have decided as a community to specifically point out and triage resources towards. Like if society one day decides like we're no longer going to consider people who are as disabled as Jessica to be disabled because it’s not a priority of our resources anymore, that doesn't make me not autistic that just means that I have no I no longer fit in our medical and legal definition of disability. I think there's just a lot of people who find a lot of empathy with what Autistic people go through. Right. Thank you honestly I'm So very Glad that this is all being recorded because Everything you're saying is honestly resonating with me a lot and You are so eloquently spoken and I’m so amazed, because I had a job interview you the other day and unlike I'm so frustrated because I couldn’t express myself and you’re doing it so well and everything you're saying rings true to my heart I also had a job interview the other day Public Sector job interview well Investing of a pub except your job interview is that you don't actually need to have social skills you just need We're going to describe socialism And that's where I'm showing you So it's perfect and hopefully you hear good news Perfect Sounds good okay well thank you