Young Autistic Adult Independence | Spectrumly Speaking ep. 121

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IN THIS EPISODE:

(34 mins) Hosts Haley Moss and Dr. Lori Butts discuss independence for young adults on the spectrum, and Haley’s new book “The Young Autistic Adult’s Independence Handbook”, published by Jessica Kingsley Publishers!

To buy Haley’s new book, click here

 

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Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.

For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com

Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com

CLICK HERE FOR PREVIOUS EPISODES

 

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EPISODE TRANSCRIPTION:  

 

HALEY MOSS (HM):  

Hello, and welcome to Spectrumly Speaking. I’m Haley Moss, an author, artist, attorney and I’m autistic. As usual, I’m joined here by the one and only my co host…

DR LORI BUTTS (LB):  

Hi, I’m Dr. Lori Butts. I’m a psychologist and an attorney.

HM:  

How’re you doing?

LB:  

Good. How are you?

HM:  

I’m hanging in. I don’t know how I feel about the fact that almost 2022 I’m a little bit confused. I feel like just yesterday it was New Years and, and like Halloween. No, it’s done.

LB:  

Right. That seems — and you know, and I hate to tell you this, but the older you get the faster. Oh, no. So yes. Be prepared. It does. It’s It’s kind of crazy. It’s like a time warp

HM:  

it goes given me stuff to look forward to.

LB:  

Yes, yes. The next thing you know your old

HM:  

Is old relative? I feel like old. Yes. Relative

LB:  

Very relative, very relative. My mother is 80. And she’s far from being old. So it’s very…

HM:  

It’s about being young at heart.

LB:  

Exactly. And I have a feeling you will always be that way. But it does. It’s strange as you do get in the years, the years propel faster and faster. It’s you don’t know it until you experience it. But I heard that when I was your age. And, and it certainly has happened. And also I mean, obviously the pandemic stuff is made time very strange to for everybody. 

HM:  

Time isn’t real anymore. 

LB:  

Right. Right. It’s very strange.

HM:  

Like what just happened?

LB:  

Right? Right. I don’t know what’s still happening. Who knows?

HM:  

It’s all one big mystery.

LB:  

It is. It is. But I’m very excited about today. I you know, Haley keeps her her things under wraps quite a bit. But now she’s she’s got a new book, another new book. And this one’s a little different. This one? Yeah, the Young Autistic Adult’s Independence Handbook. I’m so excited to hear about this, this book, because this is such an important issue. And you are, inspire independence and all kinds of wonderful, you know, young adult experiences. And so I’m going to be interviewing you today about your book. And hopefully, you’ll be you’ll be talking more about it rather than an interview.

HM:  

Oh, wow. So instead of asking all the guests questions, I basically get to be a guest. This is exciting.

LB:  

It is it is and not only I guess, but I guess they can really let us know all these wonderful ideas and thoughts you have about being young, autistic and independent.

HM:  

I think one of the biggest things that I feel like I’ve learned and that I really wanted to kind of pull the curtain back on is this idea of that what we think independence is a huge fallacy is that we think independence means that you have to do everything forever by yourself. And that is so unrealistic. And unattainable not just for neurodivergent young people in autistic young people, but for all of us. But we really hold people with disabilities to a much higher standard of what independent living is, we stress it as a goal that we don’t usually do for our neurotypical and non disabled friends. It’s just wild to me, how we look at independence. So that was something I really kind of wanted to, like pull the curtain back on a little bit is, Hey, it’s okay. Number one, if you don’t have to do everything by yourself, you don’t have to. And one of the biggest lessons you can learn in Independence is knowing how to ask for help, or realizing that you can’t do things without assistance or that you need extra support. So that was one of the big things that I really kind of went into writing this with bouncing around my head. And what I really wanted to do is kind of unpack a lot of those hidden curriculum type things is a lot of folks call it are things about being an adult that people just don’t teach you how to do. 

LB:  

Right.

HM:  

So even whether it’s assault, self advocacy, dealing with law enforcement, registering to vote, doing your laundry, how to kind of sort of manage money as best you can. Not being overwhelmed if you have to go to the grocery store or how to deal with if you’re overwhelmed going to the grocery store, like all sorts of very random things that I think are really important for young people whether or not you are going to college, you are college age, any of that to make it easier for folks. That’s kind of what I really wanted to make happen is how do I help make this a little bit less stressful have this we’re all in it together feeling and also something cool that I got to do is talk to experts in different things. who know about helping young autistic people. So I got to talk to folks who deal with complex topics like grief, or that deal with complex topics, like trying new food or how to not be overwhelmed going to the grocery store. So I got to learn some cool stuff. Like I learned about how grief might be different for autistic people. I learned about how to try new things without having that major anxiety about it, even though I still haven’t tried a lot of those strategies, because I do have that major anxiety about trying. But a lot of these, honestly, a lot of these folks are people that I think would be wonderful to have here on Spectrumly.

LB:  

Oh, right. Well, that’s, that’s, that’s a good idea to try to line them up for the next year. Yeah,

HM:  

We got a lot that had been on the show. Mikhaela Ackerman, like we’ve talked to a lot of people we enjoy. Right, right.

LB:  

Did Mikhaela help you? Did you interview her for the book?

HM:  

I did. I did talk to Mikhaela, I talked her a little bit about like fitness. I talked her about all sorts of things like that, too, because I know a lot of young people want to get a good routine or how to advocate for yourself in those types of situations. So talking to her was something I really valued. I I really did enjoy getting to talk to some of these different folks, though, because I learned a lot and there are people that I’m like, I don’t know, if I would have ever thought of this.

LB:  

Give me an example of something.

HM:  

I didn’t think about the science of how to try new foods or like how to make it like less scary. Okay, I didn’t think about that. separate it from meal time not having that pressure, or like those different trials. And sometimes it takes multiple times of trying something to realize you might even like it or dislike it, that that first time isn’t like a lightbulb moment for people. And I always thought that’s how it worked is you try something new and you like bingo. Love it hate it doesn’t work like that.

LB:  

Yeah, I that’s certainly something I it’s not on my radar. And it’s something I don’t think about, but what you just said makes a whole lot of sense. But it’s something I the only thing I can I can relate it to something kind of bizarre. I never liked avocado. My whole life never. And then I was in a car accident. And my mouth was wired shut. And the only way I could get nutrients was through making smoothies. And my wife and I got sick, you would think who would get sick of of milkshakes, right? It’s like a fantasy only. Right. And so I wanted something savory. Because every every smoothie is sweet, right?

HM:  

And so you stuck in an avocado. 

LB:  

Yeah, she started making salads. And that sounds so gross. I mean, that’s a salad in a blender, right? But it was it, it was so delicious. And because I was so craving those kinds of nutrients, then she put avocado and garlic and you know, a whole salad in a blender. And it was delicious. And so that’s, that’s how I that’s how I got over my my aversion to avocado. But, but that’s, you know, really irrelevant, but to this situation, but that’s the one thing that I can relate to. But yeah, taking it away from that kind of pressure and stress of having to sit down in a meal and having it be part of a meal, just some kind of more making it an experiment or something interesting. That’s, that’s fascinating. That’s and I guess I, my other when you brought up like, what did you learn? I know this is kind of a random? A not a short answer. But what did you learn about how autistic people deal with grief differently than neurotypical people brought that up?

HM:  

Well, so I got to speak to an expert named Carla and Carla Helberg is really an incredible human being. And what Carla was telling us about is also how society views grief, how we struggle and think that there’s this very set timeline when that’s not necessarily the key. And that’s not always appropriate, I think. I think it was really interesting and how folks on the spectrum may act out you might see people who have more signs what looks similar, at least to me, based on what you’re saying that looks more similar to burnout as well. Like, you might see people acting differently, you might see more struggles with different socializing all sorts of really fascinating things I thought was fascinating, at least, that I just really enjoyed the way that she talks about that, because I thought it was really scary. Like, yeah, I was thinking about that cuz I’m like when people are in their late teens and 20s. That might be when they lose grandparents, they might lose pets. And when I did speak to Carla was right after we lost our family dog. So for me, it was really interesting to get to listen to what she had to say. Because I just wasn’t thinking about these types of things. Massive life changes and how to take care of yourself. It just seemed exhausting to think about what it was like to be, or how you’re supposed to act, or even just seeing different symptoms and trades kind of act up a little bit more. And even what she wanted us to know is how to do things like finding someone who understands the intersection of grief and autism or having support systems or even something that I I thought about is, how do we act when other people are grieving. And it’s really difficult that we put kind of a timeline on it, there was just a lot and they were talking about like, what manners are, what kind of rage we should be doing, and how we need to be really empathetic, that we’re not just going to get over it. And you might see different things that are magnified she right she something she said really well, that really stuck out at me now that I have her words in front of me is that we don’t know what we’re going to feel basically because our culture does not deal with grief at all. So we don’t know how we don’t know we’re going to feel these things like we don’t know that we might have heightened experiences, or that these things that we are experiencing are a result of loss. And then there’s no real way to correctly perform these feelings. So people might wonder if like when we have these different responses to grief or trauma, like it might not be appropriate, quote unquote, like when people say for instance, laugh at a service or something.

LB:  

Yeah, so it’s, it’s the it’s like a double layer, not understanding, right? It’s

HM:  

She mentioned things like, some executive function challenges might be magnified, or things like eye contact, like all this stuff I might not have thought about as being a result of a traumatic event, are part of that. So it might look very different. Or it might be distressing to other loved ones of like, Why is this person acting, quote unquote, more autistic? I just thought so. So interesting.

LB:  

So it sounds like this book is not just for people who are autistic…

HM:  

Our loved ones and family members. And if you want to understand, I think honestly, a lot of this stuff can apply to any young adult like, thinking about stuff like jobs. I know even something else that matters, like what about when you meet like your partner’s family, or you’re meeting your friends, families, and, and then I was thinking about stuff that I looked over, now that it’s been a year and things are changing again, because writing during COVID definitely impacts what you think is important. And like, Oh, what if you’re a houseguest? Like when your house gets like, you probably should make the bed at your host home or something like that to you know…

LB:  

That;s something everyone needs to learn.

HM:  

It’s something that I was thinking, like, why didn’t I spell that out? And I’m like, oh, because you weren’t thinking about it. We think people are going, because whenever you go to someone’s house, I feel like you’re just like, on that much more. Right? Grab, because there’s a lot higher expectations or what, like manners and appropriate behavior looks like like, if I stay overnight at someone’s house, like I will roll the towels, I will do things that I do in my own home.

LB:  

Well, and, and every homes, every homes, culture is different. Every time

HM:  

I was asked to do things whenever I’m not at my own house,

LB:  

Right, right. 

HM:  

Rarely have it in me to executive function enough to do the dishes. But if I’m at someone else’s house, I’ll always ask if I can help with it. So weird.

LB:  

Well, it’s not weird. But also it’s, it’s so people with autism have a hard time changing and adapting to new rules. But when you think about it, every buddy’s house is a whole house of different rules and expectations. And so when you go to someone’s house, you it’s walking into a whole new culture and to adapt to that. It’s difficult, it’s difficult for for any young adult and to recognize and to recognize, you know, I guess the most important thing, like Yeah, like, the overarching thing could be just to ask, like, what you’re saying, like, ask what I could do as the host, you know, what, what can I do and things like that, as opposed to trying to make assumptions about what you should? Do, you know, asking, but asking is difficult for some people. So but that’s, that’s really, that’s, it’s really those those little nuanced things are, are very important. And, and, and it’s important to be mindful of those. Those, I don’t know what those different situations that you are going to come across as you start to be independent, and whatever that level of independence is, I mean, certainly, there are neurotypical 30 year olds that are still living at home…

HM:  

But it doesn’t mean you can’t be independent and perform. If you’re living at home like you might start a job you might be saving money. You might actually need more support with some Even like cooking or whatever it might be, it doesn’t mean that you, I think we look at independent living or when people do live at home or something, especially with neurotypical people, we see it as some form of failure.

LB:  

Right. And in our culture, too, I mean, there’s many cultures where three generations routinely lived together in the same home

HM:  

Exactly, it’s a cultural thing, as well. And I think, at least with this disability culture, we realize we’re very interdependent. And that’s not a bad thing. It’s not that we don’t want to be seen as just completely dependent, but really realizing that every single person has worth and something to bring to the table no matter what. I think that’s really where we’re going. And I think that we look at, okay, if this person moves out and all that, then we are this is a successful person. And that’s right, isn’t really true. It’s not spoken to many autistic people who see me in this kind of light have you are essentially one of the most like successful people ever? Because I don’t live at home.

LB:  

That’s the definition of success to their perspective.

HM:  

Exactly. Especially because I think what happens as well, as a lot of folks do want that. And the neurotypical people in their lives or non disabled people in lives might not think it’s possible for them, or they don’t realize that they have the support to do so. That there are that there should be different supports and ways to be able to make that happen. I think a lot of people kind of look the other way on that of realizing that this is possible, you might need more support, though. So when you look at some of the statistics for autistic young adults, between graduating high school and about 25, most of them still live with their parents or had never lived away from their parents raise your provision. The statistics that I got from Drexel, and I had to pull them up recently for my undergrad class was like, only one in five had independent living experience or something. And there’s a lot of…

LB:  

It, sorry to interrupt it. The when you say Independent Living, that means living outside the home?

HM:  

Yeah without being supervised basically. That does also include things like dorms, apartments, and also not living at home. So sometimes, like group home settings, or like, things like that, sometimes that does count. So there were, there was a separate statistic for things like that, as well. I don’t remember what the exact numbers, but it was really interesting. It’s not as common as you think.

LB:  

Right. But it’s all I mean, it’s all pretty interesting, because I mean, at least like, especially during the pandemic, right, we, for example, we, we had a friend of ours come and move in with us for a period of time, because, because they didn’t want to be lonely, and didn’t want to be, you know, wanted to have that socialization, even though it was during the pandemic time did, you know, so people that were living independently, you know, by themselves in their own apartment, was not necessarily the most healthy way to get through the pandemic. And so and so making that living independently as the bar for success…

HM:  

I’m assuming that means if you don’t have roommates, as well, like, I had a roommate since college, so. 

LB:  

Right. And that can be difficult. I mean, you know, we’re social. We’ve talked about this before. And, yeah, you know, we’re social beings. And so, I mean, but, you know, divide and conquer chores, running a household, even if it’s a small apartment is still a lot to do.

HM:  

It is everything. I have a one bedroom, and I realized that a lot of times, like, It’s a miracle that I know, kind of what I’m doing sometimes.

LB:  

Right, and you’ve got to exercise and you’ve got to do your own work. And you’ve got you know, it’s it’s, it’s a lot.

HM:  

It really is.

LB:  

So, so anyway, going back to like the tools and, and maybe, you know, maybe your book will help people recognize that, what you said at the beginning, what the definition of independence should be and what what that really makes sense and you shouldn’t feel like a failure. If, if you don’t live in this definition of independence as isolated by yourself in your own apartment, you know that that’s not really the that’s not real. Most young adults are living with roommates or living with family members, just across the board.

HM:  

Exactly, but also there are certain things that are rights and things that often get denied or even something that I wanted young adults to know how to do is something like register to vote. Because I know that if you’re under guardianship in some cases, you might not be allowed to or family members might think that because of a disability that you might not be able to vote or they won’t take, take you or you won’t get accommodated at a precinct or things like that, when you do that, you still have that right. And you should be able to have an accessible polling place. Like I still wanted folks to know, like, Hey, this is also independence because your voice matters. And if you didn’t go to a college campus or something where they sign you up on the spot, you probably have no idea how to do that. And that’s not a failure on your part. It’s just that somebody didn’t sit down and spell it out for you.

LB:  

Right, exactly.

HM:  

So I think a lot about all these different random topics.

LB:  

And that’s a lot of a lot of important not so random topics, that’s for sure. Here’s my question. Do women with autism face more challenges in achieving independence than, say, the men?

HM:  

I’m not sure if there’s a gender thing, but I think the sexism component or things like that, you might be more prone to masking or you might be later on in life getting a diagnosis for the very first time. I think there’s other issues to be considering. I think as well, when we talk about things like safety and things like romance and sex, I think that stuff is probably a lot more relevant, especially to people who are not essentially cis men. So that’s kind of my take on it. But I don’t, I was not trying to get to gender specific, because I think that a lot of these topics apply no matter who you are, or what level. That’s kind of where that was kind of where my head was. But there are things I realized, especially when I talked about something like law enforcement, that might be more of interest or something for for people of color as well, because they have different variances, because of both ableism and sexism..

LB:  

Right. Yeah, that’s a whole nother book. I think we’re writing another book. 

HM:  

Oh, no.

LB:  

 I see another book of your future. 

HM:  

Oh, no. 

LB:  

I have a vision. Any of the best tools that that you want to share that kind of cross over arch? 

HM:  

I think everyone is so different that recommending a specific tool doesn’t always go well. So I know some people swear by color coding, and agendas, others whereby all sorts of different things for keeping their lives on track. And some of them don’t work for me. And some of them work really well, for others. So I think there’s a lot of trial and error and also trying to discover who you are and your community.

LB:  

I think you’ve referenced it, like, Are there ideas for places for people to get support to kind of track there to kind of track their independence or to get…? I don’t know, I’m not probably not using the right term.

HM:  

I feel like tracking, it’s so arbitrary. But I do think that you can get support. So whether it’s from like therapy, or online, and like support groups, or whatever it might be, I think that but that coming to terms with your own identity is a huge part of being independent, or at least knowing yourself and self discovery as well.

LB:  

Right. And I guess, when this might be more of a legal question, but when, when, when autistic youths become adults, are there less support because now they’re an adult? And they don’t, they don’t necessarily qualify for certain types of assistance that they would have had? 

HM:  

It depends. So obviously, it means that the parents don’t control everything so much. But I, my first thing that I was defaulting to when you were mentioning that was stuff about like IEPs and public school thinking, Wait, well, chances are, if you’re outside of high school, the stuff doesn’t apply to you anyway. So most anti discrimination and whatnot is still things like the ADA and 504. And we’re setting a job context, the insurance stuff and things like SSI and SSDI are very much outside of my purview of stuff that I know a lot about. But I did try to sum them up very briefly, I believe, because I felt like I had to address that.

LB:  

Right, because those are important. issues right to get to maintain health insurance and medical insurance and, you know, and, and social security disability payments if you qualify and all those things like…

HM:  

Things like home and community based services, like I try to at least bring it up, but I don’t have the perfect answers as to what they really how to apply for those things. And there are different screening tools if you’re eligible, because there’s social security, disability insurance and Social Security income. So you get SSDI for you and your family, if you paid social security taxes and work for a long enough period of time, and depending on the year depends on how long that period of time is. There’s all sorts of different tools to see if you’re eligible, while SSI is benefits for people with disabilities are over 65 With limited income, so they can afford basic living needs and expenses. So some folks might be reliant on these things. That’s a whole Civil Rights arena to on what those caps are. And what Riot systems do that can also like, prevent things like marriage, or children or write lots of that is a web that I do not want to arrive at home, for that matter that I have, yeah, I’m not the best person to dive down. And

LB:  

Fair enough. I mean, I know that in my practice, a lot of times, you know, these are not people with autism, people that have, you know, behavioral problems, and the parents come in, and it’s after the child, now, adult turns 18. And the parents have now lost the ability to bet they had a lot more opportunities to kind of intervene. And if, I mean, I’m going down to a negative rope, but if the person doesn’t want help, after 18, it’s much more difficult for the parents to intervene and help that, that now adult, so I was just thinking about for the people that we talk about, I’m hoping that if they still want to, you know, if they want assistance, and that they continue to have access to that assistance that even as they’re over 18, but they stay I mean, people stay on their parent’s insurance longer now, right, I think it’s to 25, or something like that now, and, and so that that shouldn’t be an issue or roadblock for getting, you know, services for the, our, our audience that you’re talking to are people that are, you know, motivated and want to get want to be independent at some level, and you’re, you know, providing them the opportunity to think about things what that what that means. And I really do like, US revamping the idea of independence and what independence really means. Yeah, and for each person, it’s, it’s going to be it’s going to have a different it’s going to look different, but hopefully it feels the same. You know, the point is to feel independent and feel good about yourself and confident by yourself, it doesn’t mean you have to check off this box and check off that box. Any of the common roadblocks that you see to people who are for their independence that you kind of see?

HM:  

Honestly, think ableism is still one of the big ones. So like bias and what we can and can’t do. And no, that’s probably not the greatest answer, but I feel like that’s realistic answer.

LB:  

Yeah, no, that is, that’s, yeah, that’s absolutely. And anything we can do to, to help to help kick that stuff to the curb.

HM:  

I think actually believe in young people. I know that. I feel like my answers are really short. But I feel like this is one of those topics that it sounds like common sense. But there’s a lot more work that we have to be doing as allies to write.

LB:  

And so how do we how how do we support as allies? How do we support our loved ones to for their independence?

HM:  

Um, I think what we need to do is actually start teaching independent living skills earlier on and not hold it out as this big mountain to be climbing is that one day you’ll just be able to do everything by yourself forever, and that’s what success looks like. It’s just not true.

LB:  

So like, give me an example like at a teenage years…?

HM:  

like even just doing things like laundry or if you’re okay, if someone is going to be learning how to drive that we don’t just throw it on them that we gradually introduced that are all sorts of these types of skills. So it’s not just fresh no all the time for expecting us to just pick it up naturally, the way that neurotypical people might.

LB:  

Right. And don’t you think another another way is that to try and re, I don’t know, rework what a setback is and not a setback as opposed to kind of alerting, you know, meaning an opportunity for if somebody say moves out and it moves out, but that they can come back, you know, like…

HM:  

Everything is temporary. 

LB:  

Thank you. That’s much better. That’s much better.

HM:  

I think that’s pretty, pretty real to think about. 

LB:  

And it’s not a failure, you know, that’s, that’s, you know, taking away those negative. Those negative connotations is really important, and some support and lifting up. Is, is even more important. So how can people find your book?

HM:  

You can find my book through Jessica Kingsley publishers, or you can find it on Amazon.

LB:  

Congrats. Are you so excited about this?

HM:  

I am. And I’m kind of just ready not to be writing for a little bit.

LB:  

Even though we mapped out now to

HM:  

Yes, it’s it’s exhausting to think about. You don’t realize how much goes into the whole process. 

LB:  

are you going to be doing publicity on this? Are you going to be, you know, doing speaking engagements about this?

HM:  

Hope so, that’s the plan. 

LB:  

Okay. Okay, that’s great. Because I think that this is really an I mean, everything you write about is an important topic. But these are some really great tools that that are. What’s the word I’m looking for? Specific, helpful, practical, concrete. And, and kind of a resource book that you can go back to, you know, over and over again, it sounds like.

HM:  

That’s what I really wanted to accomplish something that hey, that there’s someone else who went through it. You’re not alone in here some guidance, hopefully.

LB:  

What’s the name of it again?

HM:  

The name of the book is the Young Autistic Adult’s Independence Handbook.

LB:  

It’s so great. I love it, Haley.

HM:  

Thank you.

LB:  

Congrats. I know you’ve worked really hard on this. It sounds sounds like our our listeners will really enjoy it as well.

HM:  

Thank you. I hope so.

LB:  

I’m sure.

HM:  

I have faith in us.

LB:  

I have faith in you. This is excellent.

HM:  

You are excellent. And thank you for indulging me getting all geeky every time that we do have these conversations here. 

LB:  

Oh it’s great. It’s like geeky. It’s really helpful, really is.

HM:  

I’m glad, so if you feel inspired by today’s conversation, you can check out the Young Autistic Adult’s Independence Handbook available now for purchase on Amazon. If you’re looking for me elsewhere, you can find me at Haleymoss.com Or you can find me on social media. Be sure to check out differentbrains.org as well. And check out their Twitter and Instagram @DiffBrains and don’t forget to look for them on Facebook.

LB:  

I can be found at CFIexperts.com. Please be sure to subscribe and rate us on iTunes and don’t hesitate to send questions to spectrumlyspeaking@gmail.com. Let’s keep the conversation going.