Podcast — 14 Minutes
Episode 28: Independence and loneliness, friendships, financial stress
Podcast — 14 Minutes
Episode 28: Independence and loneliness, friendships, financial stress
This second installment of the “Autism and Independence” series with Josh Miller and Clay Seim covers:
- Loneliness
- What it’s like to have few “IRL” friends (In Real Life)
- Isolation in the context of COVID
- Financial pressures
- Why having roommates can be stressful, for example sensory issues and figuring out social cues from other people.
- This video was edited by Josh from start to finish!
Dr. Gwynette: … a lot of gaps there. You both mentioned that you’re living with family and that employment options are limited. As a result of that, how much is loneliness a factor for each of you?
Joshua Miller: I know for me, I mean, I struggle with loneliness. And ever since I’ve moved into this apartment a few years ago, I haven’t talked to anyone regularly with the exception of you, as my psychiatrist and therapist, and my mom. Those are the only two people I talked to regularly. I don’t talk to anyone else. So as a result, I don’t really have any friends on social media and I don’t really consider social media friends, friends in the true sense anyways. Because if I haven’t met them in person, then I really don’t know them from that. So yeah, I’m lonely.
Joshua Miller: I have the most things I speak to it was like I said, you, my mom, my dog and my cat and it gets really really lonely really really quick. I just feel like I get cabin fever.
Dr. Gwynette: So that’s a big factor. Absolutely. How about for you, Clay?
Clay Seim: Well, I would say I do have my brother who still lives at home and I have a friend that I play with online on gaming in the UK. But again, that’s about it. I don’t have any, as they would say, IRL friends, people I go and actually see in the real world. I don’t have any social media at all. I don’t know.
Clay Seim: But in terms of loneliness, yeah, obviously. If all you got is the one guy in the UK, which you can’t always play with him anyway because the time difference is five hours, so that’s pretty, pretty drastic. Now, our schedules line up a little bit to where that is feasible. But I can’t get on late at night when I come home because it’s going to be three in the morning for him. He should be asleep. He’s not always asleep, but he should be asleep.
Joshua Miller: And to go back to what Clay said, I mean, I feel like a part of we even have Facebook if it wasn’t for the marketplace because I like to get stuff for selling. Because it seems like a lot of things have shifted from Craigslist to Facebook. And that’s the only reason why I keep it because of the marketplace. I mean, but I feel like social media as a whole has done more harm to society than good.
Dr. Gwynette: It’s definitely up for debate.
Clay Seim: I’m beyond that philosophical thing. I just don’t like it personally. So whatever harm or benefit it does, it’s just too much effort for not enough payout for me.
Dr. Gwynette: Yeah. So the upshot is that we’ve got 50,000 adults in the United States or 50,000 children in the United States who become adults every year who have autism. And so there’s just a huge number of individuals out there who need support and who are combating things like loneliness, things like the struggle for independence. I think there’s also an internal pressure. Do you guys feel pressured to get out there and make money?
Clay Seim: Sure. Well, you got to think a lot of us are, again, like we said, relying on our parents for financial security. They are older than us though and so they’re not here forever. Nobody is. But If the world is working the way it should be, they should be probably gone before we are, unless we’re making some very bad choices for our health.
Clay Seim: So yeah, no, you got to, you got to worry about some way to generate money or to at least set it up so you set up a trust or whatever else so that you can have some kind of … I know my folks are talking about setting up some kind of something that I can draw from in times of emergency. But that emergency parachute is just … that’s not something that you can coast the rest of your life. And that’s something to where like if something happens to me and I lose a job and I need some time to get back on my feet, I have that reserve, but I don’t just lose everything because of that.
Dr. Gwynette: Yeah. Is that something y’all worry about? What will happen when the parents pass on?
Joshua Miller: Oh yeah. Definitely, for me, I mean, because my mom don’t have that much money and I know she’s got life insurance. But at the end of the day, it’s like Clay said, you have to find a way to support yourself because what money that is, that’s not long-term. And my mom’s wanting to buy a house, so I would have to pay property taxes on said house and everything else. And so yeah, I worry about that because I want to be independent because I don’t want to be homeless. So yeah, I worried that every day.
Dr. Gwynette: Yeah. So for our audience, just imagine that you leave childhood, you enter adulthood, it’s a struggle. And in the long-term, you’ve got this huge anxiety or stress or kind of bearing down on us about what’s going to happen when the parents pass on. It’s not something pleasant to think about, but it’s very much in the back of our minds or even the front of our minds. It’s a very stressful place to be. In terms of independence and living situations, let’s say that you guys were able to move out and live outside your family’s homes. What about a roommate? What kind of challenges would having a roommate pose to you?
Clay Seim: [inaudible 00:06:48] … social implications that people on the spectrum are not as good at forging and maintaining relationships. You also got to think that, I mean, is this somebody that you’ve screened and you’ve chosen? Is this somebody that is understanding of what you have? Is this somebody who’s also on the spectrum? Because that presents a whole host of other problems of do your eccentricities trigger their eccentricities. Do you have that feeding off of each other? If you’ve ever done a group with other people on the spectrum, there’s always that one person in the group that just every little mannerism that they have triggers you a little bit.
Clay Seim: It’s nothing personal. It’s nothing against them. It’s just the way that you are miswired. It’s usually it’s the way people are wired. But for people on the spectrum, it’s the way you are miswired directly contradicts with the way that they are slightly miswired and creates this friction.
Clay Seim: If you’re talking about a neuro-typical person, yeah, you got to wonder maybe they have some sort of appliance or something that causes a sensory issue. Are they going to be understanding? Say their hairdryer has this particular whine and it really gets on your nerves? Are they going to be like, “Just grow up,” or are they going to be like, “Oh, I’m sorry. I don’t really have anything else right now. Maybe we’ll buy a new one.” So you got to worry about stuff like that.
Clay Seim: You got to worry about what you might do. So for me, maybe I don’t keep my … because I keep enough cleanliness to find what I need to find. But I definitely have times where mom peeks in the door and is like, “Clean that.” And so I got to worry about if they need a certain space cleaned. And a lot of times, say this person is submissive, say this they’re more of a submissive personality, they don’t like to point things out and they just kind of internalize and internalize into just can’t take any.
Clay Seim: Now, if you have that kind of personality with a gripe, that’s something that you do on the regs, their little subtle hints that they’re going to be dropping that they don’t like what you’re doing are going to go right over your head because you don’t pick up on those subtle social cues. So their little hints that they’re dropping that, “You need to do the dishes more often,” might go completely over your head until you have reached this boiling point. And then they’re mad because they don’t understand why you’re so dense and you’re mad because you have no idea what they’re on about.
Clay Seim: And so it’s the little things like that. There’s just a lot of nuances. I mean, I’m sure all of us have had lab partners or project partners who you haven’t gotten along with that were assigned to us. We’ll think that, but times 10 to 100 because you’re living with the person. You have so much more contact with that person.
Joshua Miller: But for me … because like I said, I live in an apartment, when I’m feeling really down mentally … and there’s times when I just don’t want to be around people. And if you got a roommate, that’s not a possibility.
Clay Seim: Unless you’ve got the separate bedrooms, yeah. But then, of course, that’s going to take your rent price up. So are you going to be able to spring for the rent to give yourself the space that you need? Or are you going to have to … a lot of communal space, which like you said, it’s difficult if you’re in a funk and you just don’t want to be around people. You either have to have a roommate who’s understanding of that. Or you have to have like a little bedroom that you can just kind of fall back into and just decompress and do whatever coping mechanism you need to get out of your funk, whether that’s some deep breathing or just going on and playing a game for a little bit, watching something on a streaming service, reading a book. Whatever you need to do to help yourself move forward, you got to have the space or the understanding get through that.
Dr. Gwynette: And in the end …
Joshua Miller: I mean, that’s why I don’t think I could have a roommate, to be honest with you. Because to me, I’m so anal. And so I like things so much a certain way, it comes across as controlling. And when it doesn’t go according to plan or something it just irks me and so be passive-aggressive until I just can’t take it no more.
Dr. Gwynette: Right. And I think that we’re starting to see an accumulation of the challenges here. Just to go review what we’ve talked about, we talked about how college may be challenging, how living outside of the family’s house may be challenging. Not only for financial reasons but also for emotional reasons related to symptoms of autism. So that each time you take a person, an adult with autism, and give them a roommate, there’s a very intense kind of chemical reaction. I think of it like if you dropped an Alka-Seltzer in water, you’re going to see a lot of friction maybe, a lot of reaction there and adjustment that needs to take place in order for those two roommates to be compatible. And that’s true of anybody walking the face of the earth. Two roommates, there are always going to be issues. But sometimes for adults with autism, the friction between roommates can just be so overwhelming that it’s actually better in some cases not to have a roommate because of the emotional toll it would take.
Dr. Gwynette: So this is a really tough spot to be in, isn’t it guys?
Clay Seim: Yep.
Joshua Miller: It is because I mean it’s like I’ve said before, when it comes to me personally, I feel like I’m my own worst enemy on a lot of things when it comes to hitting roadblocks …
Joshua Miller: This is Joshua Miller at the Autism News Network. If you liked this video, please like and subscribe and thank you for listening. Goodbye.
Dr. Gwynette: … a lot of gaps there. You both mentioned that you’re living with family and that employment options are limited. As a result of that, how much is loneliness a factor for each of you?
Joshua Miller: I know for me, I mean, I struggle with loneliness. And ever since I’ve moved into this apartment a few years ago, I haven’t talked to anyone regularly with the exception of you, as my psychiatrist and therapist, and my mom. Those are the only two people I talked to regularly. I don’t talk to anyone else. So as a result, I don’t really have any friends on social media and I don’t really consider social media friends, friends in the true sense anyways. Because if I haven’t met them in person, then I really don’t know them from that. So yeah, I’m lonely.
Joshua Miller: I have the most things I speak to it was like I said, you, my mom, my dog and my cat and it gets really really lonely really really quick. I just feel like I get cabin fever.
Dr. Gwynette: So that’s a big factor. Absolutely. How about for you, Clay?
Clay Seim: Well, I would say I do have my brother who still lives at home and I have a friend that I play with online on gaming in the UK. But again, that’s about it. I don’t have any, as they would say, IRL friends, people I go and actually see in the real world. I don’t have any social media at all. I don’t know.
Clay Seim: But in terms of loneliness, yeah, obviously. If all you got is the one guy in the UK, which you can’t always play with him anyway because the time difference is five hours, so that’s pretty, pretty drastic. Now, our schedules line up a little bit to where that is feasible. But I can’t get on late at night when I come home because it’s going to be three in the morning for him. He should be asleep. He’s not always asleep, but he should be asleep.
Joshua Miller: And to go back to what Clay said, I mean, I feel like a part of we even have Facebook if it wasn’t for the marketplace because I like to get stuff for selling. Because it seems like a lot of things have shifted from Craigslist to Facebook. And that’s the only reason why I keep it because of the marketplace. I mean, but I feel like social media as a whole has done more harm to society than good.
Dr. Gwynette: It’s definitely up for debate.
Clay Seim: I’m beyond that philosophical thing. I just don’t like it personally. So whatever harm or benefit it does, it’s just too much effort for not enough payout for me.
Dr. Gwynette: Yeah. So the upshot is that we’ve got 50,000 adults in the United States or 50,000 children in the United States who become adults every year who have autism. And so there’s just a huge number of individuals out there who need support and who are combating things like loneliness, things like the struggle for independence. I think there’s also an internal pressure. Do you guys feel pressured to get out there and make money?
Clay Seim: Sure. Well, you got to think a lot of us are, again, like we said, relying on our parents for financial security. They are older than us though and so they’re not here forever. Nobody is. But If the world is working the way it should be, they should be probably gone before we are, unless we’re making some very bad choices for our health.
Clay Seim: So yeah, no, you got to, you got to worry about some way to generate money or to at least set it up so you set up a trust or whatever else so that you can have some kind of … I know my folks are talking about setting up some kind of something that I can draw from in times of emergency. But that emergency parachute is just … that’s not something that you can coast the rest of your life. And that’s something to where like if something happens to me and I lose a job and I need some time to get back on my feet, I have that reserve, but I don’t just lose everything because of that.
Dr. Gwynette: Yeah. Is that something y’all worry about? What will happen when the parents pass on?
Joshua Miller: Oh yeah. Definitely, for me, I mean, because my mom don’t have that much money and I know she’s got life insurance. But at the end of the day, it’s like Clay said, you have to find a way to support yourself because what money that is, that’s not long-term. And my mom’s wanting to buy a house, so I would have to pay property taxes on said house and everything else. And so yeah, I worry about that because I want to be independent because I don’t want to be homeless. So yeah, I worried that every day.
Dr. Gwynette: Yeah. So for our audience, just imagine that you leave childhood, you enter adulthood, it’s a struggle. And in the long-term, you’ve got this huge anxiety or stress or kind of bearing down on us about what’s going to happen when the parents pass on. It’s not something pleasant to think about, but it’s very much in the back of our minds or even the front of our minds. It’s a very stressful place to be. In terms of independence and living situations, let’s say that you guys were able to move out and live outside your family’s homes. What about a roommate? What kind of challenges would having a roommate pose to you?
Clay Seim: [inaudible 00:06:48] … social implications that people on the spectrum are not as good at forging and maintaining relationships. You also got to think that, I mean, is this somebody that you’ve screened and you’ve chosen? Is this somebody that is understanding of what you have? Is this somebody who’s also on the spectrum? Because that presents a whole host of other problems of do your eccentricities trigger their eccentricities. Do you have that feeding off of each other? If you’ve ever done a group with other people on the spectrum, there’s always that one person in the group that just every little mannerism that they have triggers you a little bit.
Clay Seim: It’s nothing personal. It’s nothing against them. It’s just the way that you are miswired. It’s usually it’s the way people are wired. But for people on the spectrum, it’s the way you are miswired directly contradicts with the way that they are slightly miswired and creates this friction.
Clay Seim: If you’re talking about a neuro-typical person, yeah, you got to wonder maybe they have some sort of appliance or something that causes a sensory issue. Are they going to be understanding? Say their hairdryer has this particular whine and it really gets on your nerves? Are they going to be like, “Just grow up,” or are they going to be like, “Oh, I’m sorry. I don’t really have anything else right now. Maybe we’ll buy a new one.” So you got to worry about stuff like that.
Clay Seim: You got to worry about what you might do. So for me, maybe I don’t keep my … because I keep enough cleanliness to find what I need to find. But I definitely have times where mom peeks in the door and is like, “Clean that.” And so I got to worry about if they need a certain space cleaned. And a lot of times, say this person is submissive, say this they’re more of a submissive personality, they don’t like to point things out and they just kind of internalize and internalize into just can’t take any.
Clay Seim: Now, if you have that kind of personality with a gripe, that’s something that you do on the regs, their little subtle hints that they’re going to be dropping that they don’t like what you’re doing are going to go right over your head because you don’t pick up on those subtle social cues. So their little hints that they’re dropping that, “You need to do the dishes more often,” might go completely over your head until you have reached this boiling point. And then they’re mad because they don’t understand why you’re so dense and you’re mad because you have no idea what they’re on about.
Clay Seim: And so it’s the little things like that. There’s just a lot of nuances. I mean, I’m sure all of us have had lab partners or project partners who you haven’t gotten along with that were assigned to us. We’ll think that, but times 10 to 100 because you’re living with the person. You have so much more contact with that person.
Joshua Miller: But for me … because like I said, I live in an apartment, when I’m feeling really down mentally … and there’s times when I just don’t want to be around people. And if you got a roommate, that’s not a possibility.
Clay Seim: Unless you’ve got the separate bedrooms, yeah. But then, of course, that’s going to take your rent price up. So are you going to be able to spring for the rent to give yourself the space that you need? Or are you going to have to … a lot of communal space, which like you said, it’s difficult if you’re in a funk and you just don’t want to be around people. You either have to have a roommate who’s understanding of that. Or you have to have like a little bedroom that you can just kind of fall back into and just decompress and do whatever coping mechanism you need to get out of your funk, whether that’s some deep breathing or just going on and playing a game for a little bit, watching something on a streaming service, reading a book. Whatever you need to do to help yourself move forward, you got to have the space or the understanding get through that.
Dr. Gwynette: And in the end …
Joshua Miller: I mean, that’s why I don’t think I could have a roommate, to be honest with you. Because to me, I’m so anal. And so I like things so much a certain way, it comes across as controlling. And when it doesn’t go according to plan or something it just irks me and so be passive-aggressive until I just can’t take it no more.
Dr. Gwynette: Right. And I think that we’re starting to see an accumulation of the challenges here. Just to go review what we’ve talked about, we talked about how college may be challenging, how living outside of the family’s house may be challenging. Not only for financial reasons but also for emotional reasons related to symptoms of autism. So that each time you take a person, an adult with autism, and give them a roommate, there’s a very intense kind of chemical reaction. I think of it like if you dropped an Alka-Seltzer in water, you’re going to see a lot of friction maybe, a lot of reaction there and adjustment that needs to take place in order for those two roommates to be compatible. And that’s true of anybody walking the face of the earth. Two roommates, there are always going to be issues. But sometimes for adults with autism, the friction between roommates can just be so overwhelming that it’s actually better in some cases not to have a roommate because of the emotional toll it would take.
Dr. Gwynette: So this is a really tough spot to be in, isn’t it guys?
Clay Seim: Yep.
Joshua Miller: It is because I mean it’s like I’ve said before, when it comes to me personally, I feel like I’m my own worst enemy on a lot of things when it comes to hitting roadblocks …
Joshua Miller: This is Joshua Miller at the Autism News Network. If you liked this video, please like and subscribe and thank you for listening. Goodbye.
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