Dr. Gwynette: Hello and welcome to the Autism News NetWORK podcast. My name is Dr. Frampton Gwynette. You can follow us on theautismnewsnetwork.com. You can follow me at Dr. Gwynette on Instagram and Twitter. We’re joined today by two special guests. These are hall of famers the Autism News NetWORK, Clay Seim, Hey clay.

Clay Seim: Hello.

Dr. Gwynette: And Josh Miller.

Josh Miller: Hello.

Dr. Gwynette: Hey, Josh. This guys are both veterans in the podcast. We love having them on and getting insights from them. And we’ve been building up to this show for quite a while, because today we’re going to talk about independence. And as everyone in the audience knows, it makes sense that children who have autism grow up to become adults. The tough part is we don’t always plan ahead like we could. So I brought in two experts who are going to share their thoughts and viewpoint on the topic of autism and independence. So Clay and Josh, you guys know kids with autism grow up, but what unique challenges do adults with autism face?

Josh Miller: I know for me personally I mean, it seems like now there’s a lot of programs out there for kids, all the way try to guess you turn 18, but the minute you turn 18, I don’t know it seems from my personal experience the minute you turn 18, the amount of resources aren’t available for you just drop like a stone. And depending on what state you live in in this country, it can vary too how much resources are there to help.

Clay Seim: Yeah. I would say that Josh hit the nail on the head with that one. Definitely a instance of just support vanishing. You have, again, so many of these programs, but as soon as you hit… What is it they call it, transition age, that’s the word where you’re no longer a teenager, but you’re not quite an adult yet either. You lose a lot of those programs and you got to start figuring out a lot of this on your own. Now there is technically some support structure there, but it’s just so much less than what it was before, because you’ve got the, “Think of the children.” Before you turn 18, where everybody’s willing to give a little bit extra, to help you out. And it’s like, “No you’re an adult, you should have this figured out.” And it’s just so odd that, because again, this is transition age. So you think it would be a transition from this mountain of support to maybe trying to be a little more self-sufficient but no, it’s a cliff.

Clay Seim: It’s not a slope, it’s a cliff. And you just go over the edge and that’s about it. That would be the number one challenge is all of a sudden, you’re in transition age and people are telling you, “You haven’t done this yet, you haven’t done that yet. You haven’t applied for disability for health insurance. You should have been doing that years ago. It takes years.” And you’re like, “Wait what.” When you’re in school, you have those instructors and teachers whose job it is to help guide students with disabilities through the education system. But when you become an adult, those people are called social workers. Those people are incredibly overworked and not paid enough and burn out of time. And it’s not nearly close to the same thing. For instance, the main one for me was again, getting health insurance through disability and applying for that. And it’s my second time around on that. Now it’s been a couple of years, at least. And we’ve had to hire a lawyer because the first time they told me, “Well, you’re not really disabled enough.” Well, thanks. I’m cured now that’s perfect. Government says I’m not actually disabled. I must be fine. I’ll just go now.

Dr. Gwynette: Yeah. Because-

Josh Miller: And I didn’t mean to cut you off there, Dr. Gwynette. But I feet like too, that what programs are available for adults, you almost have to pay for almost like the podcasts that me and you did what social motion. That’s a great group. Unfortunately, they hit the nail on the head too, when they said the founder that insurance won’t pay for it. So, people who don’t have money they can’t afford it. [crosstalk 00:05:04] Because first of all, you can’t really live independent on SSI by itself. Especially not in the Charleston area. I feel, so if you live with somebody, which you almost have to. And they’re also not making that much money. So if it comes between food and bills and gas and everything else, you have to start prioritizing. And unfortunately, the couple 100 dollars, for social motion, it’s just not feasible.

Dr. Gwynette: Right. And there’s also, this is other cliff or gap between, like you said, the SSI check, let’s say somebody were able to get disability and get most importantly, the health insurance but also-

Josh Miller: Yeah, that’s what I got.

Dr. Gwynette: Yeah, you get a little bit of income and it’s not quite enough to live independently on. And yet it makes it hard to go out there and get a job. Because if you earn a certain amount, you’ll lose your disability-

Clay Seim: It’s the delicate balance of being bad off enough that you need help, but not so bad off that you can’t actually get by. It’s like with walking a razor’s edge. And of course these are just the practical financial side of it. There’s the entire other emotional side of it after that as well. So it’s not even just, , can I pay for this? Can I psych myself up and keep my head space clear and good to go.

Dr. Gwynette: Yeah. That’s an interesting thing. You picked up on Clay and of course I’m a psychiatrist, so I’ll take the bait. But what are the emotions that people can expect when you’re struggling for independence, like in terms of self-esteem and so forth?

Clay Seim: Well, again, you shift back and forth from being like, “I’m so scared that I won’t be able to do this.” So there’s obviously that anxiety and that fear of will you be able to achieve independence. There’s some guilt associated with, I shouldn’t be this much of a burden on the people that I love, because a lot of times when you can’t get those programs to work, and I know this actually is a rather common in my generation, let alone people with autism, but you end up mooching off your parents a bit more than say you want to. But yeah, there’s the guilt that, where I’m having to live in my parents’ house and pay like a reduced rent to them. Because I can’t afford what the rent for this room probably actually would cost stuff like that.

Clay Seim: So you have the fear and you have the guilt and you also have the frustration because a lot of times our cognitive abilities. Now this isn’t true for everybody, but especially for higher functioning folks, our cognitive capabilities are vastly superior to what emotionally we can handle on a long-term basis. If I wanted to get a full-time job mentally, physically, I could do that job. But emotionally, I’m not sure if I would last long. Like I probably ended up burning out much more quickly. I wouldn’t put it past probably six months to a year where I’d just be completely strung out emotionally and have a little freak out and have to take two, three weeks off and then cut my schedule back to part-time. The time that I have tried to work full-time that is what has happened to me.

Dr. Gwynette: Yeah, I think you make a great point and for our audience, as you can clearly tell, these are two brilliant guys and there’s no shortage of cognitive ability. The key is putting all the pieces together emotionally and so forth. And Josh, have you had a similar experience in terms of the emotional piece?

Josh Miller: I feel like the biggest thing for me is as I grew everything closer, I can sum it up in one word as I feel emasculated, and it’s not intentional, but in society, we were always taught that especially men should take care of themselves, right?

Dr. Gwynette: Mm-hmm (affirmative). That’s the perception. Yeah.

Josh Miller: And that we’re supposed to be independent and trust me, I do want to be independent. And when that doesn’t happen, when like for me, I’m 33 and for variety of reasons, school didn’t work out for me. The longest I’ve ever worked was a year before I got burned out and the stress is to me, I interpreted as very masculine because, I personally and I can’t speak for everyone on the spectrum, but for me personally I would love nothing more than to not be a mooch on the government. To not be a mooch on my mom and be financially independent. And to me what financial independence means, it doesn’t mean like these crazy YouTube stars, that have these mansions and these insane Ferrari’s and Lamborghini’s, that’s not what financial independence means-

Clay Seim: You want an apartment and your place to call your own and that’s about it. Right.

Josh Miller: I can’t stand apartments. So, I would love nothing more. And that’s what my mom was talking about too. When I showed her the other podcast about social motion, and I agree with her that, she believes that it would actually be cheaper on the government if we had programs in place to help with transition. Because a lot of people like me don’t want to be dependent-

Clay Seim: Same thing as many other medical issues too, isn’t it.

Josh Miller: Just getting a blank cheque, every month. I would love nothing more than to work for something. I don’t want something handed to me. I mean, there’s no sense of accomplishment or, anything like that, because to me-

Dr. Gwynette: It was something really very big there, which is when people work and they get a pay cheque, they have self-esteem that comes from that. An identity and the independence.

Josh Miller: Exactly, I mean, and unfortunately, you don’t get that with just SSI check and don’t take me wrong, I’m thankful for the money. It helps out. My mom pays rent and I’m thankful for the medical insurance, but again, I’d rather earn my way than just have something handed to me.

Dr. Gwynette: Yeah. So we need more places where people can work with support.

Josh Miller: Exactly.

Dr. Gwynette: And because you’re going to do the work. Just the support needs to be there in the longterm. So things can be successful.

Clay Seim: Well, and again, yeah no there’s so many different sides to this as well in terms of you think about logistics. So if you’re thinking about logistics, would you need to have the logistics to be independent is life skills. So we’re talking, so say you have your job. You’ve gotten well, adjusted enough, you have a balanced, maybe time and SSI and you go out and you get your own place, but you don’t drive. You don’t know how to do your laundry. You don’t know how to cook. You don’t know how to keep your space well-maintained enough to where you can actually find the clothes that you need to go and keep track of various other paperwork whatever else that you need.

Dr. Gwynette: A calendar-

Clay Seim: Organizational skills. Exactly. So if you don’t have any of those skills and you have the financial side set up, that’s great for the first couple months, but then you start showing up to work in dirty clothes and you stink and your hair is untrimmed and you’ve got nails the size of… It doesn’t work long term. You look like a hobo.

Dr. Gwynette: Yeah. So then-

Clay Seim: And for some of us we’ll be like, “So what?” But that doesn’t really work in the professional world. You got to have a baseline standard of hygiene in organization to get by. And you really have to have a level above that if you want to actually thrive.

Josh Miller: And that’s another thing too, I believe that, when you teach life skills. I mean, but I know how to drive, know how to do dishes and clean clothes and keep a clean house. But even, I have a point where it’s going to get clammy, it’s not going to get far, where was I going with this? But I believe too that when we go in life skills we need to teach them I believe how to maintain a car is important to life skills. I believe if you’re going to drive a car, you’re not going to have much money. I mean, you’re just not, so you need to know how to maintain it because AAA costs money. You need to know how to do the basics, change a tire. It should really not that hard.

Clay Seim: And the oil. Oil change, yeah.

Dr. Gwynette: Oil changes, all those little things that-

Clay Seim: Just the simple things. I mean, you should not have to know how to do major mechanical stuff. I mean, because you don’t want to mess up your car, but at the same time you should know how to do the basics.

Dr. Gwynette: Yeah, exactly. So there’s a lot of gaps there. And you both mentioned that you’re living with family and that employee or so employment options are limited. As a result of that how much is loneliness a factor for each of you?

Josh 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. This is Joshua Miller at the Autism News NetWORK. If you liked this video, please like, and subscribe and thank you for listening. Goodbye.