Today, I interview a lady named Melissa. Melissa is self diagnosed with autism & she shares many of her struggles with sensory issues, social challenges, and shares a snapshot of how she experiences and goes through life. We discuss many topics like masking, fitting in, the social stigma of being autistic, the cultural disconnects associated with speaking differently from people around you, along with Melissa's ideas for what she wishes society could do differently to better accommodate autistic people.
Today, I interview a lady named Melissa.
Melissa is self diagnosed with autism & she shares many of her struggles with sensory issues, social challenges, and shares a snapshot of how she experiences and goes through life.
We discuss many topics like masking, fitting in, the social stigma of being autistic, the cultural disconnects associated with speaking differently from people around you, along with Melissa's ideas for what she wishes society could do differently to better accommodate autistic people.
Kelsey: So today is a very special episode. This is an interview with Melissa, and Melissa is going to share a little bit about what her experiences being autistic, getting diagnosed, and the struggles that she went through and faced. So Melissa, um, thank you so much for being willing to be on the podcast to begin with. I really do appreciate that. It's really cool to be able to have different voices on this podcast, so I really do appreciate that.
Melissa: Of course, thank you for having me. Thank you for doing this for autistic people. I'm excited to listen to the rest of the podcast and future episodes. Thank you.
Kelsey: Thanks. So to get started, um, when were you diagnosed autistic, and was it hard if you got diagnosed later in life? Was it difficult, or was it a shock to recognize that?
Melissa: Yeah, um, so just a heads up, I was able to preview these questions beforehand, so I'm just going to read the response that I came up with and then, um, speak from that.
Kelsey: Go for it.
Melissa: Yeah, so, um, it's been very isolating and full of self-doubt. Uh, so many of my quote unquote issues or the reasons behind why my family would ask, "Why are you like that?" is because of undiagnosed autism. So I'm not self-identified; um, working with an autistic and ADHD therapist, she hoped that I am, but I just, I need that official diagnosis. Um, and so to continue, I don't have the best memory, but from what I can look back on in early childhood/preschool elementary days is me being problematic. Um, I would cry out of confusion, frustration, lack of understanding, and I also remember being excluded from other kids' groups, um, or if I was included, I was given, um, like a special position or wasn't really in the group, I was just, you know, around. Um.
Kelsey: That must have been really rough, especially just dealing with that constantly from such a young age.
Melissa: Yeah, and that's where I say I don't have the best memory, because it's like when I'm viewing it, I'm viewing it as a person observing it, because obviously the person that developed out of that is me. And so now I can mask, and I can, I mean I won't say I'm in the group, but instead I'm just the quiet person or the person that, you know, goes home immediately after instead of one that's crying out of confusion. And yeah.
Kelsey: Yeah, I think there's a lot of unfortunate stigma surrounding autism where it's almost like a lot of people don't know masking exists. It's like if you don't look stereotypically autistic that you can't be, which is always really frustrating when people say things like that. Um, when you got your diagnosis, was it like an aha moment, like, "Oh my God, I finally understand my entire life," or was it more of like kind of a negative thing, like, "Oh, this sucks"?
Melissa: So I'm not officially diagnosed, but when I first, um, kind of for sure felt I am autistic, yes, it was first, I think I went through like the stages—I don't want to say the stages of grief, but a few stages of like, "Whoa, I thought everyone was like this" to "Oh, it's a certain group of us." But it makes so much sense why I did some of the things I did and why I felt the way I felt for my entire life. And then it went to anger. Like, how did the adults around me not know this was normal? I mean, they were seeing other children exclude me, my mom heard me come home crying saying I just want friends. So I definitely went through anger and like, how different would my life be if I was diagnosed as a child and I got support, you know, anything, just yeah, resources. Um, so yeah, I want to say that it was an aha and for me, I am not one of those people that's like, "I hope I'm not autistic." I do believe I am autistic. An official diagnosis would help me, like I could say it to anyone if need be, but it just makes my life make sense. So I guess in a way I was grateful to find out.
Kelsey: Yeah, instead of just thinking that you're weird or broken or something like that for your whole life, finally you find a reason for it and it's like, "Oh wait, there's other people like me. Wow, I thought I was the only one in the entire world like this." Yeah, you know, it's a very isolating experience sometimes to be able to live like that, especially as a kid who can't always express that.
Melissa: Exactly. It's, I think some of the things that, you know, why I developed a mask and why I'm pretty high masking now or can be, is because I didn't understand why people were saying I shouldn't do the things I did. So I just found a way to shut it down. But I'm just like, that's a lot to unpack in therapy at a future date. It's like, how does a child, someone's basically saying to you, a helpless child, figure out how to make this work with no resources, no help, it's just, "You shouldn't be doing this." So yeah, not good, not good.
Kelsey: Yeah, especially with all the stigmas around stimming and stuff like that.
Melissa: Yes.
Kelsey: So do you have any stims? Do you have stims that you prefer more than others, and did you ever, before realizing you were autistic, stim around other people and then face a ton of social backlash for it?
Melissa: Um, I think for me, my biggest stim, and it's not one that I've heard often, in fact, before I thought I was, um, autistic, I joined a subreddit called compulsive skin picking. So I pick my lips and I pick my feet, and it is something that I remember being told, like my dad, um, is no longer a nurse, but um, years ago he was a nurse and he was like, "You're going to get an infection, your lip is going to fall off." So a big one for me is skin picking, um, but also I love hearing music. I love like feeling the vibrations of music. I like moving to it, spinning, singing, which for me is, um, making the vibrations. It's singing which is nice, but it's also, you know, making the vibrations in my throat. Um, yeah, I'm sure I have some others. Um, but yeah, I think that I've always stimmed around other people, like my family as I got older. I do it less in public, in public settings. Like I won't, I work from home but we have a lot of meetings with our cameras on, I'm not going to pick my lips in the meeting. It looks like I'm picking my nose sometimes too. So yeah, I'm aware of that, and yeah.
Kelsey: So you felt comfortable just being yourself naturally around your family, stimming or doing whatever you needed to do, you didn't ever feel uncomfortable in that scenario?
Melissa: No, I mean, my family, we all have quirks. I'll just say that I am not qualified to diagnose anyone else, but like, yeah, behind the closed doors of our home, I could be as weird as I wanted to be honestly. It was more just how it impacted my public life, like school, later work.
Kelsey: Yeah. Do you think your parents or maybe other people in your family might be neurodivergent? It's often very common for family members or even cousins sometimes to be neurodivergent if even one person is.
Melissa: Yes, absolutely. I do think so.
Kelsey: And then they think that everything you do is normal because they're the same way.
Melissa: Yeah, I've been told that. Um, okay, um, I'm gonna share this. It's difficult for me, but I called a close family member when I, like two years, two, three years ago, back when I first was reading everything about autism and saying, "This is me, this is me." I, you know, me, I like to organize things, so I typed up a little summary of why, I included sources, and I sent it to them. And they were just like, "No, I don't think you're autistic. You're just dealing with normal stress, normal." At the time that literally crushed me, but now I just laugh about it like, and that person, you know, they deal with their own difficulties, and so I feel bad that like, I wish I could share this with them and could help things make sense, but they're still stuck in the "This is normal," and yeah.
Kelsey: You know, a lot of people aren't receptive about it, and you can try to try to explain it from your point of view, and then they suffer with the same thing as you but aren't willing to acknowledge that it's not something that's neurotypical. Like sensory overload, certain fabrics that just make you feel physical pain sensations. Do you have anything like that where like, you can't wear a certain fabric?
Melissa: Um, there's certain fabrics that I touch and oftentimes like I, I'm a bag lady. I have bags, like I have an anxiety bag for when I'm having a panic attack, I have all kinds of bags. Some of my bags just have a really weird texture. I haven't pinned it down, and I guess I need to figure out what that material is, but I hate it. I hate it. It makes me feel like I'm sick, like something is going on in my fingers. And then, um, one of the big sensory things for me is bright fluorescent lights that when you say, uh, for me that's light.
Kelsey: Yeah, that's bright fluorescent light. I just, same. Do you ever get headaches from them?
Melissa: Um, I'm gonna, that I'm not the best at determining where my pain comes from, but I'm often uncomfortable and in discomfort, so possibly.
Kelsey: Yeah, yeah, sometimes like I'll, if there's a bright fluorescent light, if I walk into another room, I'll get these, I call them lightning headaches, where it feels like you're being shot by lightning for like 5 to 10 seconds and then they go away, and it always is triggered by lights, nothing else.
Melissa: Yeah, I think I feel fortunate that where I live, um, my partner is diagnosed ADHD, and there's a lot of things that he doesn't get personally, as in he doesn't experience them, but he understands and is now like my warrior. So I don't really have to deal with bright lights anymore.
Kelsey: Nice, that's awesome.
Melissa: There's a few times where he likes light to be able to see, and he's like, "I think you have better eyesight than me because you can see in the dark," and just like, can't function in the light, so I have to see in the dark.
Kelsey: Yep, I've had that conversation before with my husband, it's kind of funny. Did you ever have a scenario where you were totally comfortable in the lighting and then someone comes in and just turns on all the lights at once, no warning like?
Melissa: Frequently, yes. I would say that probably happened a lot when I was living with my family. Now we actually have a warning. It's like "Watch your eyes," or my boyfriend will be like, "Can I turn on, you know, the bright kitchen lights?" I'm like, "Sure, but I'm also getting up to leave, you know, just wait for me to leave."
Melissa: Yeah, I think fortunately for me, um, not fortunately, but there's just like, there's a Before Time and an After Time. Before I suspected I'm autistic and after. And so I'm sure stuff like that happened before a lot, but I never pieced it together. Right? I'm just having bright lights on as normal, staring at a bright white screen all day as normal, and then I discovered dark mode. Before, you know, like. So I started, you know, coming up with kind of my own little accommodations, but it's like I don't even remember what it's like to deal with those things. I work from home, I'm a homebody, I go to the library and I go to a few places, but basically I can control my environment and that has made a huge difference.
Kelsey: Gosh, that's incredible. I hope to get to that point. I'm in office every day right now, so every single day it's just bright fluorescent lighting in every single room. Luckily they have a dark room that I go to often, but it's, it's tough. It's really tough cuz you don't, I mean you don't want to feel uncomfortable in these situations, but there's nothing you can do about it, it just happens. And I think what a lot of people just don't understand, this is not, it's not like we're afraid of lights or afraid of sounds, it triggers a physical pain response in the brain. It is us being in pain.
Melissa: And a lot of us, especially those of us who have learned to mask, it becomes, like I was saying I'm sure it happened a lot to me before, you know, you may have a meltdown at the end of the day and not realize it's because you sat in the bright lights.
Kelsey: Yeah.
Melissa: And you dealt with people coming into your space, interrupting your flow. Like it's, yeah, all my sympathies for working in the office. I really hope you can, um, if you'd like to work from home or work in a different environment, I hope you can find that as soon as possible.
Kelsey: Thanks. Yeah, thank you, I appreciate that. Yeah, it's tough because when you're so high masking, you sometimes, what happens is people recognize that and they actually in a lot of cases prefer the mask. And that's when it's really damaging, because then it's like, people only like me when I'm masking. Does anyone like me when I'm not masking? And I feel like it's really important to have at least a couple people in your life who you can feel comfortable not masking around for your own health, mental health.
Melissa: Yeah, I would say that's one of the things that, I'm going to go ahead and speak for all autistic people, but I think that's really important, important for survival. Just like as a human being, not be able to be yourself anywhere is soul crushing. And yes, I think that we all need people that we can be ourselves around, and especially if it's people that get it. Like my boyfriend, just another example of, he may not always experience it himself, he believes me when I'm able to vocalize what I'm experiencing and then he takes it on as something that he watches out for, like he watches out for the...
Kelsey: That's awesome. Yeah, I think that every autistic person deserves that. I'm so glad to hear that you have someone like that, it makes such a huge difference to have a support system. So do you think that being autistic ever made it kind of difficult for you to connect to your culture?
Melissa: Um, yeah, so I'll read my next little paragraph. Yes, um, I'm Black American on one side, but I also have family from Africa on the other side. Um, being a little vague about the specific region and country just to not make me so easily identifiable, but it's, it's not a big deal to me. Um, but always felt too different for both worlds, so like Black American culture and, um, we'll just say African culture. But, um, I've always identified with the misfits. So fortunately, I feel fortunate that I grew up in the West because US has a large demographic, large diversity, and like the types of people, you know, they're weirdos, except everyone. And I, and I, it's not that I hate to use that word, but that is a word I claim for myself, like, I'm a weirdo. And so even if I'm just sitting next to the other weirdos or I'm seeing them on TV, like that kind of feels like my culture, the underworld of the weirdos. Um, but I am also beginning to realize that some of this, some of the struggles, um, that I have trying to fit in with my culture is probably due to being autistic, so it's not just a cultural thing, it's an autistic thing.
Kelsey: Yeah. Did you ever have like pretty bad unsolicited comments from either people of your race or people not of your race questioning why you were speaking the way you were or anything like that?
Melissa: Yeah, uh, I will say, uh, fortunately I have not had a lot of comments from people not of my race. Just, and I'm not saying that that doesn't happen, I'm sure it does, or it probably they don't affect me as much is what I will say. But yes, I've had comments from other Black Americans where, as especially as a kid, I mean people are like just blunt when they're children, like "What's wrong with you?" And one person called me an "R" that, which, you know, it's not a nice memory, but he was a child and so I will not hold that against him wherever he is. But yes, unsolicited comments, people know you're weird. People even now when I mask, people can tell there's something different about me. It's just gotten to the point now where it's like I no longer care to fit in. There's a saying, "The opposite of fitting in is belonging," and it's like, I don't have a lot of energy to socialize. I want friends. I want the weirdos to come hang in my backyard and me plant and stare at the moon.
Kelsey: That sounds like so much fun. Unironically, like how come more people don't want to just lay in the grass and stare at the moon?
Melissa: I think that they are out there. We are out there, but the problem is rest of life is so exhausting, it takes energy to, you know, keep in touch with someone semi-regularly at least, and plan like, "Okay, every third Tuesday we lay in the backyard." So I do think that there are...
Kelsey: This is extra funny to me because I hang out with my other friend every Tuesday, specifically Tuesday, who's also potentially autistic, and that's just really funny to me that you just picked Tuesday.
Melissa: Honestly, that's what I want. That sounds ideal, a friend that's like not going to get offended and not going to be like, "That's weird to say this is our day that we hang out," yeah, and we're flexible to canceling but there's no expectation to do more unless...
Kelsey: Exactly. Yeah, it's pretty great honestly, I think every autistic person should try to find someone like that. Yes. So on a slightly different topic, um, were you ever bullied in school? Did you ever have any really frustrating situations where you felt excluded and bullied because you're autistic?
Melissa: Yeah, um, probably a lot of snippets of memories, but again I am attached from that, I don't know if it's in a healthy way, but, um, yes, I was excluded from friend groups. I literally went through the whole "you can't sit with us at the lunch table." Um, people just like, you know, autistic kids don't always dress, you know, like the other kids or they're not always so concerned with their appearance, so definitely getting bullied for that. Um, and then yeah, just the exclusion. I think, um, as a little girl, it was the exclusion more so than like someone, you know, outright beating me up or shoving me around or anything overtly violent.
Kelsey: Yeah. How do you think that exclusion affected you in your development?
Melissa: Um, I definitely want to say it stunted my social development, but now as an adult, I think probably I am still stunted socially. I just, I feel like I've made peace with it. Like I no longer feel like I have to fix myself and do all the right things to have the perfect group of like five friends and go to the bar every week. Like I don't have to do that. Um, I currently don't really socialize with anyone outside of my family and boyfriend, so that probably isn't ideal and I would like to change it. But again, it's got to happen organically because I'm just too exhausted to work for it anymore.
Kelsey: Yeah, and it's so tough because you want friends, but whenever you try to meet new people you just get rejected for just being the way that you are.
Melissa: Yeah, when you get that, you know, for a lifetime. Oh, I hate ghosting so much. I could I could create a one-hour podcast on how much I hate ghosting, but basically, like if you're an adult and you ghost someone, then you have the social skills of like a child, straight up.
Kelsey: The crazy thing is that seems to be completely accepted by neurotypical people. They may not be happy about it, but like, "Yeah, I've done it and I do it and it happens," and it's like, tell the person! You don't want to, you can't anymore, whatever!
Melissa: Like I had a friend, um, yeah, right before the pandemic, and I do want to reach out to her again cuz we had a good time. I'm thinking she might be neurodivergent if not autistic. Um, basically right before the pandemic started I was swamped with um, school assignments, and so I just messaged her and I was like, "Hey, we used to go to," um, there's a dog bar in our town, so like the dogs at the dog park and there's a bar, and they would have trivia every night of the week. So I just told her like, "I won't be able to go to trivia anymore, I'm swamped with schoolwork, um, but I'll get in touch afterwards." And then the pandemic happened and it's, it's three years later, but I I did intend to get back in touch, it's just we couldn't socialize for a while and then I really got out of the habit of it, so yeah.
Kelsey: And I think there's also a huge difference between, you know, people having struggles with responding because of something like ADHD or autism compared to neurotypical people just making the choice, "Oh, I'm not going to respond because I am afraid or because I don't feel like it's worth it." Like at least give someone closure, straight up.
Melissa: Exactly. That's what I was going to say is I, at least I feel like I closed the chapter of like, "I can't hang out because of school."
Kelsey: Yeah, that's awesome that you told her, "Hey, I have a bunch going on, I might not be able to respond," stuff like that. I really appreciate it when people do that because then you've set the expectation like, "Hey, I'm going through XYZ," and then there's like this understanding of, "Okay, we're still friends even if we haven't talked in a while too."
Melissa: I think that, and I do think that if I reached out to her we could get together. Um, so yeah, I think the difference between when an autistic, ADHD, or other neurodivergent person does it, and a neurotypical person does it, is yeah, there's no closure and there's no consideration for the other person. If someone's like, "Hey, are we still getting together for coffee?" and you just don't say anything ever again, that's horrible. Just say, "Can't do coffee."
Kelsey: Yeah, exactly. And I mean barring special circumstances of course, but yes. Of course, in general, like does it, did it really take you 3 months to respond to my text about, "Do you want to go to this concert that is your favorite band?" Like come on, seriously, like it's just really annoying.
Melissa: Yeah, but I think we're accustomed to doing the hard work, right? It's not easy to basically go to someone and say, "I can't do this thing anymore," and maybe you explain why or maybe you don't, but it is difficult to force yourself to do that. Nobody wants to do it. Um, I think maybe a lot of autistic or, I'll speak for myself, sometimes I feel like I have to do it, like how could I just leave someone? Like a moral responsibility. Yes, exactly. And I think that, um, sometimes neurotypical people don't hold themselves to those rules as strongly as we do.
Kelsey: Definitely, definitely. So what is something you wish that people knew about autism?
Melissa: Get into my, um, okay here's my response, my written response and then we can elaborate. Um, uh, I wish that people realized that autistic people are as varied as allistic people. Um, there is no one way to look or sound autistic. A lot of high masking adults were once children with no masks. Their problems were seen as an inconvenience to others that had to be rectified, and thus it led to them developing their masks.
Kelsey: Definitely a solution.
Melissa: Yeah, it's a solution that benefits those around the autistic person but can often harm the autistic person over time. And that's definitely like firsthand experience of like, that is why we don't know why we're masking, or how we're masking, or how to unmask, because we had to learn to develop the mask from nothingness at a young age.
Kelsey: And that's literally for survival.
Melissa: Yes, yeah, because if you don't mask well, uh, enjoy the next 13 people excluding you from whatever the next thing is, you know. Like, and you get more labels. It's just the way people talk about autistic people that aren't able to mask, that aren't verbal. It's all from the perspective of how it inconveniences their parents or the people around them or society, and it's like, have you ever stopped to consider how difficult it is for them in this world that only looks at them and sees an inconvenience?
Kelsey: Yeah, and I think a lot of people who believe stuff like that don't even realize how many autistic people have changed the fabric of society. Because when you're bored all the time and you have, you know, less dopamine or less dopamine receptors or anything related to that, you get [ __ ] done because it gives you dopamine to get things done, whereas everyone else gets the dopamine from socializing. So I think that a lot of people have so much internalized ableism that they really, truly don't even know A) how many people around them are probably autistic and B) the significant contributions autistic people have made to society.
Melissa: Yes. Just to give a pop culture reference because this kind of stunned me, my uh therapist told me about this, but Eminem the rapper is autistic. Oh, wow. Not only said it like in public, he's made songs about it. Um, but you know you never hear like, that to me is, I've never heard of that, and I've heard of Eminem before and I've heard of people mentioning Eminem before.
Kelsey: That's really interesting.
Melissa: Yep, and there's other big names. I think there's someone, this is gonna sound terrible, I don't know anything about sports, but it was either a basketball player or a football player who recently came out as either autistic or neurodivergent, and it's just, you know, it gets a little blurb here and there. But like in everyday society people aren't thinking, "This amazing person who I idolize or who's famous or who's rich is also autistic, and maybe their talents, their abilities, were able to develop them."
Kelsey: Yeah, like a hyperfocus.
Melissa: Yes, exactly.
Kelsey: Yeah, so on the topic of masking, what exactly does masking look like for you from what you've been able to determine so far?
Melissa: Yes. Looking for my response, like for me when I mask, I used to smile all the time. Even at home, even alone, I would always be smiling constantly, and it was kind of rough honestly.
Kelsey: Yeah, that sounds extreme. And I only say that in sympathy, like I'm sorry that that's what masking does to people. That's the harm. Like that's...
Melissa: Yeah, it totally messed up, you know, gave me jaw pain for 20 years, and so one day I'm like, it's, once I figured it out, I'm like, it's not worth it. I'm not going to put myself in pain just to appease other people like this, like this is [ __ ].
Kelsey: Yes, and that's what masking is, it is for other people.
Melissa: But, um, here's my written response. So, um, I struggle to sometimes determine when I'm masking and when I'm not. It feels like a subconscious change to me. Outwardly I may be quiet, and I'm in the smile and nod phase. Oftentimes I feel pretty empty inside when I'm masking. Um, that is to say I'm quiet because I truly feel I have nothing to say, grinning and bearing it and hoping to just get out of the situation where I can relax again, and not worry about controlling my reactions and my facial expressions, and my thoughts come back and my opinions come back. And it's so, for me I think masking is a compartmentalizing of myself, and then there's just like a shell that smiles and nods and does the right canned responses, and sometimes doesn't, but for the most part I think I've learned how to fake it.
Kelsey: Yeah, and it's frustrating we even have to. I mean, I feel like it shouldn't be so difficult to say, "Hey, just so you know, I have a flat affect, which means my face doesn't respond the way you'd expect. It doesn't mean I'm not interested, it doesn't mean I'm not focused." Like I feel like this should be common knowledge and it's not at all. Not only is it not, but then it leads to discrimination even in things like careers and stuff like that too. Encounters with police, I mean, police officers are... oh my God, I can't even imagine that.
Melissa: Yeah, um, that must be terrifying for you. Um, I've never had encounters with police. I'm just saying I've heard of like autistic people either having to carry a card or not, and the police officer thinks that, you know, they're literally having a meltdown or they've shut down, and the police officer thinks they're not cooperating, so they're so much rougher with them. And it's just, police officers are people, like they respond emotionally. And if they're neurotypical and they're not thinking, "Like, maybe this person is just terrified to be in my presence," they're going to take it as like insubordination and like, "Okay, you know, put the cuffs on you." So that does happen to autistic people. I fortunately have had minimal encounters with the police, um, nothing negative. But I know that I am fortunate, I'm not going to sit here and say that's the norm for all autistic people interacting with the police.
Kelsey: Yeah, it's, it's definitely tough. So on that note, what do you think that, what is something that neurotypical people don't understand about your behaviors or what you do or how you act that you'd like to shed light on?
Melissa: Yeah, um, I have a shorter response with this. It was hard for me to answer this question honestly, because it's like, I am no longer thinking from the neurotypical perspective as much. But, um, this is what I wrote. Yeah, sorry, my brain was trying to figure out the words to that. Okay. But, um, so I would like neurotypical people to realize that oftentimes autistic and other neurodivergent people struggle with nonverbal communication or social expectations. It's just because, um, specifically in the example where it's easier for us to just be honest, just to be real, I find a lot of neurotypical people react negatively to this honesty. They instead read it as an affront to what they expect to see and hear in like a social setting. So it's like, "Oh, you can't say that." But it's truth, and you asked me the question, and now you're mad at me. And it's, it, a mask is, for me it's, I don't want to say it's a lie, but it's something that you're not, and it's so much harder to remember it's something that you're not and keep up with it. Sometimes like remembering 2.5 seconds of eye contact and two seconds off.
Kelsey: Yes.
Melissa: I think I scare people with the stare down, but it's like I can either stare you down or I can not look you in the eye. And I find that I get in more trouble for not looking you in the eyes, so...
Kelsey: Oh my God, yes, yeah. Yeah, I definitely agree with you about the nonverbal communication. Um, I found out literally last week, like not maybe even four days ago, that if you ask "why" to a neurotypical, then automatically that will trigger a feeling of judgment, and a feeling of a negative response, offensiveness, which is crazy! That just, that literally, it literally blew my mind. And I've been, I've been trying to talk to people and hear their perspectives on this stuff that I mean, I have never in my life realized that. And I was always the person asking why, why this, why that, because I'm curious, because I'm genuinely interested. But apparently most neurotypicals will only use the "why" phrases when they're judging you for something. So like if you say, "Why do women like makeup? I don't wear makeup because of sensory issues, I I would really like to understand why do women like it," you know, I was hoping to get some personal anecdotes and stuff like that. The responses from something like that were so negative, it was ridiculous. Like this was on Reddit, I was downvoted so much. Everyone was like, "You're a misogynist," and started assuming I was the guy, the guy who posted the original post. It was a [ __ ] show. And I don't really care about downvotes, but what I found was interesting is that in a way, Reddit and other social sites like this kind of reflect society a lot, and I couldn't believe it because to me, to just say "Why do people like makeup?" is such a neutral question. Like I would have never assigned any negative thing to that at all. If someone said, "Hey, you used to have short hair, why do you like short hair or why do you have short hair?" or you know, all of, for me almost all information is neutral until proven otherwise. And it was shocking to realize neurotypical people do not operate that way at all.
Melissa: Yeah, I've never sat down and thought about that. But um, now that you say it, there's a reason why like I'm very comfortable asking my boyfriend "why" on so many things. I'm very comfortable asking him like hypotheticals, "And let's just say hypothetically I wanted to build this thing, how would I do it?" and he's like, "Well, it's not possible." Then I'm like, "Can I do this, can I?" So I have always been like within my inner circle kind of allowed to ask "why."
Kelsey: Um, even me too, my mom tells...
Melissa: Yeah, my mom tells me the story of, um, so she grew up, you know parents from the silent generation, like they were all about children should be seen and not heard, that stuff. My mom, um, you know, she was, every generation is usually a little bit more loose with how they rear children. So I guess, um, my brother and I, we were, um, little asking my mom a bunch of questions, and my grandma was like, "Why do you let them talk back to you so much?" And she's like, my mom was like, "They're not talking back to me, they're just curious." Now an anecdote makes sense, like my grandma saw it as disrespect.
Kelsey: Yeah, she totally did, yeah.
Melissa: And my mom was just like, "No, it's fine, I support fostering their curiosity."
Kelsey: And that's so interesting, that's such an interesting dynamic to see between your mom and your grandma.
Melissa: Yeah, yep. So for me, my mom is definitely not autistic or ADHD or OCD, like she's not. She is through and through allistic. Um, and as a result I would ask her these questions. Like in middle school, she would tell me you have to make eye contact with people to show interest. She didn't tell me to take breaks!
Kelsey: Yeah!
Melissa: So I was that kid in middle school who would just stare at you for like 15 seconds. Like I just didn't, and people started fearing me. I swear like in high school people were actually afraid of me. And I was, I'm about as threatening as a golden retriever puppy.
Kelsey: Um, but when you get, when you get used to certain biases, a lot of people are biased against autistic people at such a subconscious level that they don't even know it, they don't, they're not even consciously aware of it.
Melissa: In fact, they're supported by social norms in saying there is something wrong with that person. Like, so everyone around you to fear you instead of to look within and say, "What am I afraid of?" And yeah, they were so scared, one of the popular girls who was the most terrified of me put in my name for the end of like, "Most Likely To" awards, and I won an award for it: Most Likely to Take Over the World. And I was just like, "Uh, I don't know if you guys know me or not, like I don't know if this is a compliment or an insult." But it was just...
Kelsey: I like that one because I think you could make it happen. There's a, I saw something on Reddit where there's a group of autistic people basically trying to create a separate autistic society.
Melissa: So, yeah I saw that and I was wondering if that was even real. I kind of felt like it might be satire at first, but I wasn't sure. And then my concern was like, you know, we can get very intense with our opinions. What if, you know, one group is like "We want to do it this way" and the other group is like "We can't do it that way" and then there's factions? And I'm like, well that mirrors neurotypical society, so that's fine. But I'm I'm I'm okay with us taking over the world.
Kelsey: So you for world leader. That's funny. So from a societal perspective, what do you think society could do to make life easier for autistic people? Like accommodations or even public knowledge, anything like that?
Melissa: Oh, this one I really love because I think about this a lot for not just autistic people, not just for neurodivergent people, but all marginalized people. So immigrants, undocumented people, LGBTQIA+ people, disabled people, other disabled people. Um, and it to me is so simple. It's, uh, so I'll start my written response. Um, Live and Let Live. Um, and then I kind of went into me personally, I'm still determining what accommodations would best suit me, but overall I would like to have my wishes respected. For example, if I'm not feeling up to going to family events or celebrating certain holidays, I would like not to have to feel the weight of all of my family's emotional responses and disappointment. Like it should just be like, "Cool, you don't want to come, there's plenty of us, just celebrate without you."
Kelsey: Um, that's a good example.
Melissa: Yeah, and I've honestly started doing that. Um, I'm not religious, but I did grow up Christian, but my family does like Christian and the secular commercialized aspect of Christmas. But I I don't do Christmas anymore. And part of it for me was, we're all adults. Like we don't have any young children in our immediate family. And it's just, it makes our interactions on that day so transactional. "Well what did you get me?" and "I got you this." And it's, I said, I started saying like, "We can do things together. I'm no longer about the whole buying the gifts." And like my my family buys a lot of gifts, it takes hours to go through gifts on Christmas morning, and I'm telling you the youngest person there is 23 years old. So so there are no children, but um, and it is a fun tradition, but uh, I just can't do it anymore. And I think it's literally my third Christmas that I still go over on Christmas Eve, I'm there to break bread and do the family time, but Christmas morning when it's just about the gifts, I just don't want to do it anymore. And at first they were very disappointed and they at first they were defensive like, "Well we're not going to stop doing gifts." And I was like, "I don't want you to, but um..."
Kelsey: That's such a perfect example of the kind of miscommunications that that autistic people experience on a daily basis. Like you say you don't like something or you don't want to do something, and then everybody loses their entire minds thinking that means that you're saying that everyone in the world has to hate it. And it's like, no, I just stated I don't want to do this, but I'm not...
Melissa: The crazy thing is, yeah, it's like I didn't even think about them not doing it. I never was like "I want them...", it was just like, "I don't want to do this anymore."
Kelsey: Yeah.
Melissa: Um, yeah, and so to continue, um, another thing I think that might help me is to be able to pursue my interest freely and with fervor, and to even have those around me willing to hear out what my interests are, um, even if, yeah, not their interest. Which kind of goes back to what we were saying, is like having that support, having people that you can just be yourself around. Like my boyfriend geeks out about a ton of stuff that I wouldn't say is my interest, but just hearing someone like talk passionately about what they're interested in and being able to ask questions and get like info dumped, to me is like, that's bonding, that's socializing. So it'd be nice if we could do that everywhere. And I know sometimes there's issues with like the conversations last too long or one person is dominating, so I guess there has to be some regulation, but I don't think it has to be as strict as it is now.
Kelsey: Yeah, like I got, I got so used to spending time with my best friend that for, for a month or so I just forgot to mask around other people because we're both like the exact same. And we would both just like, if she wants to info dump for 20 straight minutes, I will just listen to her and support the heck out of her. And if I want to info dump for 20 straight minutes, she lets me do it too. And it's, it's honestly hilarious. Sometimes we'll start with talking about something and we'll end up at something so completely different and unrelated. Like I'm also pretty sure, I'm pretty sure I also have ADHD and she's diagnosed ADHD, so we have, we have conversation that would be impossible for anyone else to follow.
Melissa: Yeah, um, I have conversations like that with my family. And in fact, um, I used to notice this about myself and stop myself, but it's kind of coming back, the whole interrupting people, which is like, it happens all the time talking with other, um, divergent people. And and I've tried to stop myself just for the sake of the podcast being hearable, you know, but like at work, people do not like that. My boss was like, "Don't interrupt me," and I'm just like, "But I know what you're going to say so I'm just getting to the next point in the conversation!" And I do think there's some ADHD in me and my family as well, um, because our conversations are the same way, they get... we also get loud and we get like passion, but we're never angry usually. Just in passion, like, "No, that's not right!" and we're looking up sources and we're, yeah, enjoyable.
Kelsey: Yeah, that's awesome. That's how it should be.
Melissa: And then so just the last part of my, um, written response, I wanted to share this part. So the main thing that I wish that society and neurotypical people would let all of us marginalized, differently abled, differently whatever people, um in general, I wish the world would accept and meet all people where they are instead of sending a message that we must change or fix ourselves to fit an inequitably applied standard.
Kelsey: Definitely basically. Yeah, like Live and Let Live. What you think is normal or what, like it's also I think a huge thing with control for neurotypical people, like they want to control what everyone around them does. And we probably want that too, but like outside of our families that are respecting and understanding, that never happens for us. We're pretty much told to fix ourselves, have no expectations of other people, then the reverse is applied to us where all the expectations are on us, and when we fail to meet them it's like the end of the world.
Melissa: Yeah, and I think sometimes a lot of those expectations can actually create more mental illnesses. In my case I developed OCD pretty bad, and I'm pretty sure it's because I had just so much expectations from such a young age. And I'm not saying I'm not appreciative of that because certainly those expectations pushed me to where I am now, and I've done a lot with it, but at the same time I think that a lot of anxiety disorders and a lot of OCD can be developed from not having the right support or being undiagnosed for so long.
Kelsey: Yeah, um, and it's kind of insane that it develops also because there's so much that we have to remember and be aware of and be constantly, like it's like we're powering a ship by ourselves inside of our body. Like, "Okay do this with your eyes, now do this with your mouth, and look here and don't fidget and yeah..."
Melissa: I told that to a neurotypical once and he was shocked. He's like, "You're thinking about how long to make eye contact?" And I was like, "Wait, you're not? Wait, hold up, wait, you don't have to think about that?" What?!
Kelsey: Yeah, sometimes I'm at the point when like I notice other people are looking away a lot and like, "No, you're not doing this right, we're supposed to stare at each other. Like, okay so you looked away after 30 seconds, well now I can't look away, that's weird. So I'll just keep staring." I just keep saying this is so true, like different types of people, it's, it's, it's tough. Was it ever tough for you to see like the social norms or to know they exist or to be able to... did you ever question them a lot?
Melissa: Yeah, I think I'm fortunate that my mom is a person that works, she's not super social. As much as she can control it, she's not going to do the things that make her uncomfortable, like parties and those types of events. So I was fortunate that I think I took after her, and I've learned to just shed as much as, what as much as I can of what I don't like to do in terms of expectations. So like, I know there's certain places I'm not going to go, certain people I'm not going to interact with, and I think it just, again I don't know if it comes from a healthy place, I had to learn to stop caring what people thought. Like as a kid I cared about everything and it, that just wasn't sustainable. That's one of the things I had to stop doing to just live. And so I think that helps me out, sometimes I'm aware of it, sometimes there are moments where it's like I'm uncomfortable or "Is this going to get me in trouble?" But a lot of the time I, like when I'm home again, I try to remind myself that's not a place I want to be a part of, that's not a group I want to be a part of. Um, yeah, try to do that as much as possible.
Kelsey: Yeah, I honestly think that it would be doable and easy to bridge the gaps that in our society between neurotypical people and autistic people. But the problem is what that would require would be a lot of neurotypical people looking at themselves and analyzing themselves and recognizing, "Oh my God, I didn't know I have a bias against people who don't make the exact amount of eye contact that I want." And that's something that, you know, the majority of people aren't even willing to do, to be able to look within and say, "You know, I might have bias somewhere." It's a tough thing, but a lot of people just won't do it.
Melissa: Yeah, I think we are very interested perspective. I mean we, at least for me I think a lot, I spend a lot of time in my head, so I am analyzing what I'm what I'm thinking. I don't think that comes naturally for neurotypical people. So what it would almost involve is that they would have to go through what we go through now. They would have to monitor all their behavior and thoughts and reactions. That is very difficult. Um, that is sometimes deadly for some people. You know, if you can't do it, if you, you know, before we had societies if you didn't fit in, you know, you were dropped off in the woods and that, that was death. Like, yeah, exclusion and isolation used to mean death and it still can for some people. Um, so I don't I think yes they could do it if we can do it, they can do it. But where's the incentive? There's so many more of them.
Kelsey: Exactly. Most of them when they are working in autistic spaces, it's again from that perspective of, "Well how can we make these people less of an inconvenience or how can we get these people to change themselves so they can fit in and be like us?" Or worse, all the mythology behind "Here's how I cured autism." Autism is not a disease and it does not need to be cured. Every time I see any ad, anything related to curing autism I just want to scream.
Melissa: Yeah, that's. And I really feel bad for, so like one of the benefits I feel not being diagnosed as a child, I don't know if this culture existed as much in the 90s, but like autistic parents that like, will do anything to get their child to be quote unquote normal, like ABA therapy, and just they'll do anything except accepting their child for who they actually are.
Kelsey: Yeah, and that's the sad part.
Melissa: Yeah, I feel fortunate that I could for the most part be myself. I think a lot of what was difficult and what my parents took on to teach me was how to be normal, right? So like, it's not acceptable that I run to my mom and cry every time. Like I remember specific instances where she was like, "This is the last time that you get out of this, you know, child group thing by crying and running." But you know at home that would have been fine, you know, crying and running to my mom. Yeah, she's not the most emotional person herself, but she would never be like, "You can't cry, don't cry." It's just certain situations in the public eye mean not to.
Kelsey: To an extent, I almost feel like autistic people have have to be taught how to create a public persona. Yes, do you feel like that's accurate?
Melissa: Yeah, I do. I think, um, and I I don't doubt that most parents or adults are coming from a place of concern, like they want that child to be able to grow into an adult and be able to function in society, and they are probably unintentionally teaching children how to create that public persona. But it's not, it's not like taking a class and being able to take notes and look back to it. It's it's a lot of "Don't do this" or "How could you do this?" or "You should know better," and so you're just like, "Okay, well I won't do that anymore" or you shut down. Like I in school, even now like I do online classes now, but I dealt with selective mutism in school, like through high school in college the first time, I just would not talk in class. And thinking back, I think I realized well, if I'm not allowed to cry, if I'm not allowed to show my frustration or have a tantrum, or I, in preschool I kicked my teacher, I did all kinds of things. I just shut down and I just didn't speak at all. And eventually thoughts, you know, my opinions in those situations went away. I, it wasn't even that I was suppressing something, it just nothing came to me. I just, yeah, couldn't speak, and so that's, that was my public persona. I guess it's better to be known as a shy kid than the kid that kicks their teacher. So that's crazy.
Kelsey: Yeah, that's something I don't have a lot of experience with. I think I've had selective mutism maybe uh two or two or three times max in my entire life. I always had the opposite problem, hyperverbal, where like I will have straight up six paragraphs come to me in the span of one second and I feel like I have to write it down, I have to get the information out there somehow. It's tough, it's tough because you know you you probably didn't want to be the known as the quiet kid. If someone had been able to meet you where you were at and understand what was going on.
Melissa: And instead of me being seen as anything other than the girl who talks a lot, you know...
Kelsey: Yeah, it would have been nice probably for you to be able to just express yourself. I mean, in my opinion an expressive child sounds like an intelligent child. Like I mean you get to a certain point and you do that enough and and maybe you can do things like public speaking or you can be like, speaking is writing, speaking is art, like letting children express themselves with minimal limits. It's like, okay well you know you do the talking stick thing fine, but you should have been able to just express for as long as you needed to, and that should have been accepted, because there's always going to be the kids like me who were happy to hear you talk and super interested, but had nothing to say themselves.
Melissa: Yeah, I, and it was funny, it's funny you say that because I actually, I legitimately had a bunch of friends in elementary school who were considered the quiet kids. And looking back I kind of wonder like, were they also neurodivergent? Like is that why we were friends? Very possibly. One of them confirmed it, one of them confirmed it, and I'm like this is really really funny, like.
Kelsey: Yeah, I'm curious. I know I'm not interviewing you, but do you think that, um, those friends, the quiet friends, while you were more expressive and more talkative, do you think you helped them find their voice? Like do you think, cuz I know with me when that happened, the quiet kid who gets with the kid that takes them kind of under their wing or we just become friends, but they're like they're themselves and they're open, that kind of inspired me to do it and I was more comfortable around those people to open up.
Melissa: Uh, I don't think it, I don't think she really was, but it was kind of an interesting thing where she would tell me "hey uh XYZ" and then, but she would tell me "I don't want to say it in front of the whole class," so I would, I would be like, "Oh well don't mind if I do, let me just you know..."
Kelsey: Yeah, like she would ask me to kind of be her voice. I kind of helped her indirectly with that, like if she was afraid to mention something, I, I wasn't afraid. Like I, the entire class already hated me most of the time, so what would, what did I have to lose? Nothing. If I was the tattletale, so be it, like I just didn't care anymore. I was like, I'm just going to do what I'm going to do.
Melissa: Absolutely, I guess that's a, I think that's another unhealthy side effect of, you know, how we're treated as children. But the benefit is you did just speak up for yourself. You also kind of learned you can't care so much what other people think, or you literally will be in a rigid box and doing nothing.
Kelsey: Yeah, I had to give that up at like age eight cuz the bullies were so bad. I'm like, okay, I know that whatever they're saying is pure lies, let's just let's just ignore it. It was rough, school is so rough for so many autistic people, and the sad thing is it's not even something that is even related to us at all. It is almost exclusively school's inability to give us the support we need, or even protection that we need. In my case I was physically abused by my peers, and a lot of, uh, for, for so long, literally for so long, and the bus driver just didn't care. Like, so these I feel like marginalized groups and especially marginalized kids in school really need some kind of protection, at least a teacher that cares or something like that. And and I also don't really understand how like, like I would eat with eat lunch with the guidance counselor every day for like two years, how was that not a flag like, "Hey, maybe you're not neurotypical?" Like, how did no one see that and and suggest, "Hey, maybe you should get tested for for autism?" But this was back in the early 2000s and society just didn't even know what autism even was. We still don't, but at least now it's it's a little bit more vocalized.
Melissa: It is, and I I am too, like I've never worked in a capacity with children, but I feel like that's something I would have picked up on. And it's why didn't anyone? And you know, maybe sometimes there were people behind the scenes, and you know, maybe there were autistic or neurodivergent adults that did try to speak up, but they were shut down because they're also bullied by their peers. So it's just...
Kelsey: One of my teachers I know for sure is undiagnosed, um, probably autistic. And she just, she she, because she was she thought everything I was doing and saying was just normal. And it's that same problem again. Like so you you know you get support from the the neurodivergent people, and but even then, whether you do or not depends on whe- how accepting they are about themselves.
Melissa: Yeah, and then you know in that case, which is that's a beautiful example of a teacher recognizing that, then it's almost like they can't help you because they're like "No, I'm done living behind the mask, I'm done you know..."
Kelsey: Yeah.
Melissa: Yeah, "I'm done basically saying these behaviors are unacceptable, so you're cool go about your business." But then...
Kelsey: Yeah, you're still a kid and and you need protection from the people that don't think that way, but yeah, yeah.
Kelsey: Well uh, I have one last question for you. From being autistic, do you have any sensory issues? I think we've already talked a lot about the social issues that you kind of went through and that I also went through as well. Um, but yeah, do you have sensory issues? Do you feel like ants are crawling up, uh, from your feet all the way to your head when you put on jeans or certain fabrics or anything like that?
Melissa: Yeah, I stopped wearing jeans and pants, uh, like 10 years ago. I I wear a lot of skirts and dresses, and it's, I do like feminine things, so I don't want to say it's not from my femininity, but it's from the constriction. Skirts and dresses don't constrict me. But um, yeah I wrote a little bit longer on this one so I'll read it. Um, I deal with a few sensory issues that I've become aware of, um, though depending on the situation, I believe I suppress a lot of this. Um, but basically I can be both hypo and hyper sensitive to certain things. Um, these include bright fluorescent lights, which hurt me. Night driving and the glare associated with it are extremely difficult for me. I have misophonia, certain sounds like yeah, chewing, cats cleaning themselves, certain crunching noises like boots in gravel, they really, really upset me. Like my boyfriend was sitting down helping me with a homework assignment, he's chewing gum behind me and I'm just like... And and we have a relationship where I can say something, but he feels so bad, he's like, "Oh I'm so sorry I caused you pain." So that makes me not want to say anything, but I just really wanted to be like, "Stop."
Kelsey: Yeah, my mom has that, and she had the same reaction, action when I used to, I used to be addicted to chewing gum. It would drive her insane. She would like straight up yell for like an hour like, "Stop the chewing near my ears," and and I didn't know what the heck the problem was. And then like years later I found out about misophonia and I was like, "Oh that's what it is." So it wasn't something that uh was you triggered by something else, she actually had really bad sensitivity to certain sounds.
Melissa: Absolutely. And and it's, there's a balance. Like I try to recognize it's me and it's not other people, because I chew and I'm sure I make the same noises. I also find that like if I'm eating with someone and I'm eating at the same time, it doesn't bother me as much because literally the noises in my mouth are blocking theirs, or if there's TV on or music on. So I find ways to like, I don't want to make every single person that chews around me, or God forbid a cat that's cleaning themselves around me, leave. Not appreciate, but um, yeah. And then, um, I also have pretty poor connection to bodily sensations, um, interoception. So for me that means not noticing when I overeat, also not always being familiar when I'm hungry. Um, also nausea, strong pain, they are easier for me to detect. I do tend, um, to be able to suppress certain levels of pain. So like I've noticed it more lately where it's like, "Yeah my back hurts" or "My stomach hurts," but I'm just not going to think about it and it goes away. Which probably is why like as I get older I have more and more health issues.
Kelsey: You know it's very common for, um, autistic people to have digestive and gastrointestinal issues, I found out.
Melissa: Um, yeah, my primary care doctor, um, she wants to test me for sleep apnea, and I'm actually doing the at-home test this weekend. My therapist, when I met with her last week, she was like, "Oh yeah, sleep apnea is very common in autistic people," so it's...
Kelsey: Well that's news to me too! Thank you for mentioning that because I didn't know that, and uh thanks for telling all the viewers of this podcast that too.
Melissa: Absolutely. Um, and oftentimes the person that has it doesn't know they have it. So if you have a partner or family member or you can record yourself, oftentimes it's it's loud snoring, but it's not just snoring, it's at certain times it's like you're gasping and choking for air, and it's just because your airway is, I believe, not lined up right and you literally, your brain has to wake up out of sleep and remind you to breathe. Which is terrible for sleep quality, which also affects things like anxiety, depression.
Kelsey: That's rough, I'm sorry you deal with that.
Melissa: Yeah, I um, if it wasn't for my boyfriend I wouldn't know. But I'm, I'm really hopeful, um, there's treatment, there's like you can get devices to put on your jaw, um, or there's like the CPAP machine which helps open up your airway. So I'm just from my research people are like once they get treated for it, it's like night and day. They're like, "I had no idea how how badly I was sleeping." And I'm always dealing with brain fog and just so, I'm hoping that's that's something that can help.
Kelsey: Yeah, I hope it helps you, I hope it I hope you find the solutions you're looking for.
Melissa: Thank you. Yeah. And then the last little part, um, I said uh alexithymia. Um, I definitely struggle to identify emotions and other internal reactions when they're first occurring. If they get bad enough that I'm pretty close to meltdown, then I'm aware at least that something is wrong, but maybe not the cause.
Kelsey: Yeah, um, do you ever like feel an emotion and then two hours later you're like, "Oh that was anxiety"?
Melissa: Yeah, I am terrible about so I only notice anxiety from the physical, um, symptoms like heart racing, heart palpitations, stomach clenching. My therapist was talking to me about how anxiety literally may it may not be true anxiety, it may have developed out of suppressed emotions. Specifically anger. And I don't know, um, autistic women or just, um, with the more introverted type of autism, anger is like something that you probably expressed as a child, but now like for me at least, if I do express it, it's a huge like, it's built up and it's a, it's a meltdown. But um, yeah she thinks that like yeah, sometimes these emotions that we aren't able to recognize or address then become physical symptoms or things like anxiety that is more recognized, but being treated for anxiety isn't always being treated for the root cause, it's being treated for the symptoms.
Kelsey: Yeah, and especially with alexithymia like I thought for 26 years that I had never experienced anxiety. I genuinely thought that, and turns out, turns out it would I actually had an, I have a diagnosed anxiety disorder, and it has only become that because of being autistic in a society that's mostly not accommodating.
Melissa: Yes, and a lot of, yeah, a lot of autistic people just like we develop our mask also lose the ability, or not lose but even if as a child didn't know it was called anxiety, something was wrong but we're used...
Kelsey: And I would have never, I'd never even picked up on it, I would just it felt like meltdowns were out of nowhere, and and they were pretty they were pretty rare for me because I got so good at suppressing it, which was really unhealthy.
Melissa: Exactly. And so we develop mental health disorders, and I think that is because you're so used to not trying to, even if it takes work, you know, if you have to sit down and write it out and you can't just say "I'm angry" like a neurotypical person might, we don't do that, and so we carry it around, and it's one of those things where we're like, "It's just normal, I thought everyone did this." It's not normal. It's not healthy.
Kelsey: Yeah. Yeah, and it's tough especially if you can't identify what emotion you're feeling, you know someone's like, "How are you feeling?" Hell if I know! I mean honestly how how would I even know? So you get used to almost masking how you're feeling because in the moment you just don't even know.
Melissa: Yep, and then that's when all social script, social script...
Kelsey: You're crying, "I'm fine!"
Melissa: Yeah, exactly.
Kelsey: I found out recently you don't even have to respond to that actually. You like if someone says "How are you?" you can just say "How are you?" right back and they won't even, like no one even recognizes "Oh wait, they didn't answer." No one cares, it doesn't mean what it means, which is, it's yeah it's infuriating.
Melissa: I I'm actually having some trouble at my current job, but I, good news, I got an offer for a job today.
Kelsey: Nice, congratulations!
Melissa: Yeah, I'll be putting in my notice tomorrow, um, but it's not been going well at my current job because my boss was like, "Yeah, push back," we're dealing with insane turnover just like a lot of places are, and it's just stressful. Yeah, my boss was like, "Push back," and I took that literally, so I'm sitting there telling them all the problems of the system and I'm in trouble. I'm like getting special one-on-one meetings and it's just, it's horrible. I'm so glad to be out of there, but again I guess he didn't mean to push...
Kelsey: Yeah of, yeah of course not. Like when upper management asks for feedback, turns out they don't actually want it. Yeah, when I left my last job I was like, "Yeah so here's all like I'm leaving for XYZ reasons, this one this one this one this one, here's my list of suggestions to upper management of things that they really should be doing that they're not doing," and I gave them all the feedback, and yeah, they did not like that.
Melissa: No, they don't, because people hear feedback and just immediately think you're targeting their entire identity.
Kelsey: And that's the difference, another difference between neurotypical and autistic people. Like if you tell me "I don't think your song is good," I'd be like, "Okay, how can I make it better? Cool, like you don't like this song maybe you'll like this other song better." Like to me it's a it's a neutral thing. Like you, your preference did not align with this song that I created, but maybe another song I create would. But if you were to tell like a neurotypical person "I don't like your purse," it's almost as if you are insulting them as a person, and not only that, they in some of them even internalize it and will now never use purses or never use that purse.
Melissa: Exactly, yeah. It's like what the thing that you like you're going to give up because one person doesn't like it? Like, yeah.
Kelsey: To some extent I think that's something that has helped us as autistic people, because if someone says "I don't like you," it's like, "Okay you and like you and the other 400 people join the club, like it doesn't really matter." It's like, okay, I don't really care, you're just one other random person. But if it's like for neurotypical people that would be, that would be way worse because then all the assumptions, the assumptions that we're not making, come into play. Yeah, we're not going to assume if someone says "I don't like you," we're just going to take it at face value: okay, I don't like you, our personalities are incompatible or whatever, you know, like basic face level. But for a neurotypical person, if you said that to them, that would be like the equivalent of "You're a piece of [ __ ]" or something like way worse, because of all the assumptions that go into that that play into that.
Melissa: Yeah, and that's, I think that's um, that's a downside from the neurotypical person perspective, but going back to what you said how you gave, you listed all the issues and you gave suggestions, that's a societal loss right there where, like people pay consultants. Like we're pretty observant people, I'm not saying we're perfect, a lot of times if we're telling you "This is the issue and you should try this," at least try it before you say "Oh how dare you critique it," because that was free consulting for you!
Kelsey: Exactly. Especially if, you know, 27 people left the team in the last three months, there's probably a reason for it, and it's, autistic people are going to tell you straight up this is the problem. Uh, but but most neurotypical people don't like to hear that because then that is challenging their entire identity.
Melissa: Yes. It's, it's such a challenge because from our perspective we're presenting totally neutral information, and then all of that neutral information gets assigned to subtext, one that we can't control, and this happens at such a subconscious level that most people don't even know they're doing it.
Kelsey: And it is a huge loss, it is. If we cared to better and not just make certain people richer, but I won't go on a rant about that, um, we cared to better society, that's a huge loss. Like that, just think of all the autistic people in all aspects and fields of life.
Melissa: Yeah, like, offer that even looking at a career standpoint, the majority of autistic people are unemployed.
Kelsey: Yes, unemployed, underemployed, yeah, or underpaid. It's just, it's absurd, it's ridiculous. It's like so you're going to take the people who might actually potentially geniuses in a particular area and not give them accommodations. It just doesn't make any sense.
Melissa: This, this is my advice to all CEOs out there: find your autistic people in your organization, make them consultants, leave them alone, triple their pay, I promise you will see improvements.
Kelsey: Of course they won't do that because it's like, "Oh no, they don't deserve to be paid well, it's it's, we people who waste time and you know just react emotionally and just honestly..." To some, like you're you're definitely right to some extent, because social niceties pay. If you're the kind of person who talks to everyone in your office, everyone knows that you're going to be a nice person and they're not going to want to fire you, but if you're an autistic person who is, you know, hyperfocused on, I don't know, actually doing your job, then it, then you get feedback like "Oh you look unfocused and uninterested in your position, it is clear that you don't care." Like, uh, clear to who? Clear to who?!
Melissa: Yeah it's clear to me that you have ableism like, seriously I got an email, like I don't even care I'm leaving this job, I got an email last week basically saying, at first I was like, I was impassioned, I was like "These are the issues, this is why we're losing all the good people," and it got to the point where it was probably disrespectful, but I was just so angry because we spent months going in circles about how we're going to fix these issues and they're not doing anything. But so I stopped that, I was like, I'm getting myself heated, I really shouldn't care that much, I'm trying to get out. Then my next approach was just to answer "yes," "no," "I don't know." And so I basically was, I was neutral, flat affect, just "yes," "no," "I'm not sure," "I don't know." And I got a long email, which I have my boyfriend read it, it doesn't make sense to me. One thing I kind of took out that I like, didn't seem like corporate speak, was um, "I've noticed a lot of times when I ask you questions you just say I don't know, and that doesn't represent the core values of our company, like teamwork." And I'm just like...
Kelsey: Yeah, because they want you to lie and give some [ __ ] answer even though you don't know.
Melissa: Yeah! And I literally was thinking in my head like, so like having conversations with my boss, "So how would you like me to convey to you that I don't have the information since I'm not allowed to say I don't know anymore? Do you want me to lie? I'm not going to lie because then if I lie it's wrong or it causes an issue, I'm then held responsible. Like I'm not stupid, I know that what you're looking, what he's looking for is a reason for it to be on me and not him," because he's also overwhelmed. It's like I was giving good advice, I was saying "Be kinder to people, hire people, be kinder to people," yes, like he came in, he was like "I'm with the military, I was in the military and I run a tight ship," and I'm like, military people get like court-martialed if they leave, and in the corporate world people just leave, so that's not a good... And sure enough, we've just continued to lose people. And I, I get heated about this, but I think, and my boss was saying it's the injustice of it all. My work, my actual work, I don't mind. I could do it for the rest of my life, it's just bookkeeping. It's, it's, I probably could push myself and move up, but I like being in the lower roles only because I feel there's less social expectations, less schmoozing, and the, yeah, all that. The niceties. Even at like the lowest roles, the underpaid roles, they sometimes just hound you, and that's when I just can't take it and I I start doing worse emotionally and mentally and I have to leave. And so that's where I am again, but I'm glad to get out of this last fiasco. So yeah.
Kelsey: It's tough. I bet I bet him saying that, he probably wanted you to list your recommendations in a way that he would interpret correctly. But that's the problem, you know, we say something that we think is neutral and then people lose their minds over it from an assigned negative subtext that we can't even see.
Melissa: Correct.
Kelsey: And that's just really frustrating to deal with all the time because you don't make these assumptions, but everyone else does. So then you're like, "Wait, how do I have how do I have to phrase this? What do I have to say differently?" and it's very easy to get trapped in the rejection rabbit hole in that way.
Melissa: Yeah, like "Oh I guess I'm not good at communicating, I'm not good at talking, I'm not good at listening," because of neurodivergence making it hard to do all those things.
Kelsey: Yeah.
Melissa: I think yeah, I was feeling like it's like I can't win. No matter what I do, there's still a complaint, there's still something I'm doing wrong. And that is tough. Like even as a person who is more aware that you know I have to mask and I have to fake it, when I'm doing my best even at that and I'm still getting negative feedback, that's when I'm like, "Okay I'm out of suggestions. Like yeah, seriously don't know what else to do." Yeah.
Kelsey: Yeah. Well thank you so much for sharing all your experiences. I really appreciate it, and do you have any last thing that you'd like to share for this episode?
Melissa: Um, I'm, I'm a bleeding heart. I just, I say to all autistic people, all neurodivergent people, especially the ones that have trouble getting diagnosed or who aren't believed, like we're out here. We're all together separately in our own homes usually, but um, there are resources for us. This is one of those resources I I literally am so excited to listen to um, future episodes. And I encourage every autistic creator, content creator, get out there, share your stuff. Don't feel like it's, I know you know there are more and more autistic people on social media and and media, but I say until there's as much representation of us as there is of neurotypical people, there's a space for everyone.
Kelsey: Definitely.
Melissa: And I, I'm so excited to have been able to be a part of this, and yes I'm rooting for you. Thank you for doing this podcast.
Kelsey: Thank you so much, Melissa. Thanks for sharing your experiences and ideas and opinions. I I really hope that I get to continue to do interviews with other people. And also I wanted to let you know, if you know anyone who wants to interview, feel free to reach out to me. I'm always looking for different types of people to interview and I think it's important to be able to hear different voices because if it's just my voice, I only have one lived experience. But if I am talking and listening to other people's experiences, then a more concrete picture comes into mind of what does autism look like. And you know, I bet, I honestly bet any neurotypical person who's listening right now has probably never heard an entire conversation between two autistic people.
Melissa: Yeah, and it might come as a surprise honestly, because most neurotypical people just think autism is Down syndrome or or think that you're basically Sheldon Cooper from The Big Bang Theory, which is also inaccurate.
Kelsey: So it's really awesome, I'm so happy to be able to have you on this podcast and to be able to have some more women representation as well, because that's another aspect that is so seldomly studied, so thank...
Melissa: We're overlooked a lot.
Kelsey: Yeah, especially medically and and all of that, not getting get into that, that's a long episode. Yeah, maybe you could speak with an autistic or neurodivergent medical professional.
Melissa: I would love to, like I don't know anyone if I...
Kelsey: I I have a contact where I could do that actually, but she's typical. But she studies autism and ADHD extensively, and I chat with her every week pretty much, and we exchange resources and neuroscience information and all that. She's an incredible contact, so probably at some point I will have her on this podcast just to share what she's been doing.
Melissa: Very nice, I'm looking forward to that episode.
Kelsey: Thank you so much, Melissa, thanks for joining and I hope you have a wonderful day and a wonderful weekend.
Melissa: You too, have a good one. Have a good week going into next week.
Kelsey: Yeah, yeah, thanks, okay.