Autism in 2022 | Spectrumly Speaking ep. 122
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IN THIS EPISODE:
(29 mins) In this New Years episode, hosts Haley Moss and Dr. Lori Butts discuss what they think the best moments for the autism community were for 2021, and what they hope 2022 has in store. Do you have goals set for the new year? We would love to hear! Happy New Years from Spectrumly Speaking and Different Brains!
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
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EPISODE TRANSCRIPTION:
HALEY MOSS (HM):
Hello, and welcome to Spectrumly Speaking. I’m Haley Moss, an author, attorney, artist advocate, and I’m autistic. As usual, I’m joined here by my co host, the one and only…
DR LORI BUTTS (LB):
I love that, always makes me giggle. This is Dr. Lori butts, I need to stop giggling at the beginning of the show, but I love your intros. They’re just so happy! I’m an attorney and a psychologist.
HM:
So in the grand tradition of things here at Spectrumly Speaking, we are somehow getting closer to a brand new year. It’s crazy. That being said, this is our last episode of the year. And if you’re familiar or unfamiliar, we have a tradition here at spectrum Lee speaking. And each year, we kind of get together, and we discuss what we consider the best moments for the autism community in 2021, what we hope the new year will have in store 2022, which to me always just sounds like 2020 And then two, so our second pass at 2020. Or, you know, seeing what we’ve enjoyed throughout our time hosting what we’ve learned we kind of just take this time to reflect and also send our listeners with some hopes, some inspiration in the right direction, not the inspiration porn way but inspiration to do better to make an impact all that good stuff, and things that we’ve enjoyed learning about and hope that you might want to revisit some of our quote unquote Greatest Hits or all of our hits throughout the 2021 season.
LB:
That seems like a lot — a high bar. So let’s try our best and and I’m gonna I’m gonna make one of these attorney disclaimers: If we missed you, if we miss you, I apologize profusely. Because all of our all of our guests have been amazing. And so I don’t want anybody to feel left out if we if we miss if we miss someone so that that’s all
HM:
Yhat’s actually really great and kind of to kick us off. I wanted to actually give a shout out to all of our guests because I actually do know who we’ve had throughout our time in 2021. So a huge thank you for sharing their time and their generosity and their wisdom and their knowledge. We’d love to thank our friends of the show and guests so Camille proctor Carly folgen Kim haying Sara Sivaji, Hernandez Jacqueline googans, Leah Coleman’s McKinney, Mikayla Ackerman, Maisie Sutar to Siena calf salon, Marcel Champey, Tony boo Shea, and you and I. So that was our lineup of new friends and old friends and returning friends and people who we would like to know better as well. And I know that, of course, whenever we think about the new year, we’re going to make new friends. And we’re going to also see some familiar faces probably coming back to Spectrumly Speaking so my fingers are crossed. So if you weren’t on the show this year, or you know someone who should be then please let us know, because it’s always wonderful to get to keep meeting folks who are doing good within the Autistic community and a huge thank you to all of the guests that we’ve had this year.
LB:
Huge thank you for inspiring and educating me, that’s for sure.
HM:
Yes. And I think a really cool thing is from each guest that we’ve had, I’ve learned something different.
LB:
Me too.
HM:
So I’ve learned about entrepreneurship. We’ve learned about race, we’ve learned about different ways to speak about neurodiversity. We learned about issues that particularly face young people. We learned more about careers, we learned about lawyers. We’re both lawyers, and we both kind of like have that same conscious lawyer who doesn’t lawyer eyeroll like lawyers for years, we learned about lawyers. For like two whole episodes we learned about lawyers. We learned about work we learned about ally ship in being an active accomplice. We learned about occupational therapy, we learned about adaptive and inclusive sports in the Special Olympics, we learned about parenthood, we learned about so many cool things.
LB:
So many great things, so many great things.
HM:
I think that’s my favorite thing that happened in our little bubble this year is that we got to keep expanding our knowledge. And I know what we say every year is that we hope to continue to have a more diverse group of folks to talk to and I remember when we talked about this every year, I would say I think we did really great at increasing the amount of autistic people we talked to and I know that’s something since we both came on board that spectrum a team that both of us took really seriously Right, and I and I am really proud of the direction that we went there. And something else that I hope to continue to work on. And I know that I say this every year, but the diversity of autistic voices and experiences that we get on our show is something that I take seriously and love when we hear from not just cisgender women, but when we hear from people who are queer when we hear from people who are non binary, and we hear from trans women and people who essentially are not your stereotypical cisgender, white man, talking about autism. So I think that’s something that we’ve been doing. And that’s something that I hope that we continue in that Spectrumly Speaking continues on in that tradition for a very long time.
LB:
I think so too, and I agree with you. And I think we, I think we’ve done a really good job of hearing from different perspectives and different ideas, and it’s just been open every single week, it opens my eyes to something to something I hadn’t thought about. And that that’s growth. And that’s learning. And I think we’re doing a great job. And I anticipate that we’ll continue doing that.
HM:
I just get really excited about the conversations that we have. And we have had, and just genuinely the people that we meet, and how passionate everybody is, no matter how they feel about certain issues, because we as you know that we often don’t agree on every single thing that happens, whether it’s personal or professional, but we still want to learn as much as we can. And we also want to be affirming of everybody, no matter how they feel when it comes to autism issues. So I think that’s always really cool.
LB:
Oh, right. Absolutely. I mean, that’s the whole point. I mean, if you only talk to people that have your perspective, where’s the learning, you know, it’s, it’s when you stay in your lane, then you don’t see all these other perspectives. And so it’s, everybody’s perspective is important to hear and to understand. And, and it could, you know, change your perspective on certain things. And that’s, that’s what’s so great about having inclusivity. And having an opportunity to, to hear what people are thinking and feeling about certain things.
HM:
Exactly, and that’s also why I value and I’m thankful for our audience here in 2021. Because I know that sometimes they share things with us, or they suggest different guests that they think that we should be having are the things that we should be thinking about. And I know that’s something that is really cool. Yes. So I’m also thankful for listeners like you. Oh, not to totally put on my PBS voice. Exactly. And finally, support from viewers like you. Sorry, I watch Antiques Roadshow. so used to hearing that it’s so good. It’s so good. Total random aside that I love Antique Roadshow.
LB:
The one thing I learned from Antiques Roadshow is if you have a sword in your basement, it’s worth hundreds of 1000s of dollars.
HM:
And nobody really knows if that random, like pottery that you got on sale like 20 years ago was worth $5 or $500,000. That’s exactly.
LB:
I have to say, though, no, going back to our show, one of the best things for that for me, and this year was actually being a student and one of your webinars Haley and I know that that’s not on Spectrumly but and my other sound bite, you know, that falls on me learning about you, your constant publishing and your two books, not you’re just one book, but then a surprise book comes out at the end of the year. And it’s like, wow, I mean, the I have to say, probably my most memorable things are learning how accomplished you are. And even though I speak to you all the time, there’s all these accomplishments that I don’t even, you know, get it’s just a tip of the iceberg. You’re pretty amazing.
HM:
I don’t even know what goes on my own life. But I kind of sit there and I’m like, Oh, wait, I did do this thing. And I think a lot of that’s also just imposter syndrome, internalized ableism, a whole bunch of other things. And also just feeling like you like you have to take the time to rest and you don’t have to be superhuman. I think I’m trying to unlearn that is that you don’t have to be superhuman to be deserving of respected things. And I think a lot of people with disabilities kind of go through that.
LB:
Well, prove yourself even more than the next one.
HM:
Yeah, exactly. You have to prove your competence when other people have it just assumed.
LB:
Right. Right. Right.
HM:
And it’s really kind of tough to think about so sometimes even though I’m like I’m really proud of myself. Sometimes it’s like you think that I think I’m not doing enough because I’m so used to that being ingrained in me almost like it’s not a failure on the point of anybody that I know or any of the adults like adulty adults for that matter in my life, it’s just something that I think you learn very quickly in this world when you are neurodivergent or disabled is you have to be almost an overachiever to some extent, because it’s the only way you get respect or you get opportunity in while an average neurotypical person doesn’t have to be exceptional all the time. Right? Right, they get the luxury of being average. Right? You guys kind of like put it, that’s what I always call it the luxury of being average. And I’m like, Well, if you’re disabled, or neurodivergent, you either have to be like a superhuman, who’s exceptional. And kind of build into that like superpowers narrative that always makes you feel kind of awkward at best. Or you have to be someone who is I also don’t agree with this is deserving of pity, or that night, so much support that you can’t do anything, which is also not true, because everybody is capable of something. And your ability to work or produced are any that does not determine your worth and validity as a human being. Right? So that’s kind of something in 2021, I hope that we can put behind and we can do better going into the new year is actually valuing people no matter what.
LB:
Right. My, my brain is processing that. How do we how do we accomplish that? Just, you know, by loving or affirming or appreciating people where they’re at and, and not expecting, not expecting more or less, or whatever, just having that, that balance of being mindful of everyone’s doing the best they can in that moment. And they don’t have to be anything more than that.
HM:
I’m just really excited about how we can really make those bigger cultural shifts. And even if we’re just part of that conversation for right now. I think that’s as if that’s the best that we can do, then that matters to me.
LB:
Yeah, yeah, I think that that is the best that we can do. And that does matter to me, too. And so, you know, we can’t decide that we’re going to change the world, but we can certainly keep keep our peace of, of what
HM:
I look at it as you can open hearts and minds one at a time.
LB:
Right.
HM:
But you don’t have to change somebody’s entire way of thinking or their entire belief system are anything but just even opening their hearts and minds to something that maybe they didn’t think about or realizing, oh, maybe we didn’t do this right or wrong. And here’s how we can do better. That’s why I always tell people we’re calling people in not calling people out.
LB:
Ah, yeah, exactly.
HM:
I teach that a lot when it comes to bias.
LB:
Yeah, I like it. It’s really, it’s a really positive way to look at it.
HM:
People just assume everything is calling people out. Like sometimes that’s appropriate. But a lot of times you’re calling people in and like, Hey, you can this was bad. But you were not the worst person on the planet for it. Right, right. You are bad if you intentionally meant to cause harm, and you just are a bigoted, mean spirited person.
LB:
Right. But most people are trying to do the best that they can. And if you go with that framework, and how we can be better, and we can join in instead of falling out. Exactly. Yeah, I think that’s a that’s a revolutionary look, and maybe other people in 2022 to jump on that. I think you’re onto something, Haley.
HM:
I don’t know if I’m I don’t think I’m the one who came up with that. But it’s something that always stuck with me. And that always bears repeating. It really does. It’s just taking your I feel like most things, it’s almost like you hear something and it’s like you got to put your own spin on it too. Because people use it in accountability context, and I use it as in learning contexts. I like to use everything for learning because I’m like, everybody, everybody’s learning.
LB:
Right, every day.
HM:
And that’s what I hope we keep doing in 2022 is we keep learning.
LB:
Learning, growing, thinking, using our brains
HM:
and start putting people into boxes. Which is probably I think, this is probably a little bit more recent, but I’m considering putting people in the boxes, one of the lows of the community for 2021.
LB:
Ah.
HM:
is you know that there’s always been camps of folks who do high functioning, low functioning, severe or mild autism, all that types of stuff. And I think it was earlier this month, I believe that the lancet and the medical community is like “we’re gonna replace severe autism with profound autism”. And to me, it just sounds like more of the same. So it sounds like we just made this little evolution Every journey from low functioning to severe to profound and I think I’m like all these things mean the same thing, and I understand that the kind of the intention is that these folks who do have more complex needs are more visible and evident presentations of autism get more support, which I’m all for everybody needs support in this community. And but my biggest problem with functioning labels more broadly, and whether it’s profound, severe, high, low functioning, mild, whatever terminology people are using is it really does kind of place to different groups of people. And I’ve noticed this, especially as growing up as a young autistic person when high functioning was what was used to describe me, is you think about the people who don’t have that labels. I’m autistic, but not like that, like you already have the stratification against your own people that are taught to you by neurotypical non disabled people, which makes me feel kind of weird. And of course, I’ve learned better since I was 15. But it always kind of rubs me the wrong way. Because I realize when you are labeled as quote, unquote, high functioning, or anything, or mild, or whatever word people are using, you don’t get the support you need, because people assume you’re mostly, quote unquote, normal, or that you don’t need support, because you’re so high functioning. And if you get in the other bucket of profound, severe low functioning, people assume you can’t do anything. So I feel like it’s kind of a lose lose situation. So I would be great if we just went by what specific needs people have that that person might need daily support in their everyday life in their places, I need more support than others. So I think I’ve mentioned on the show many times, I am not great at parking the car. I think I’ve mentioned this many, many times, and I know you have given me rides, places, most people are usually pretty cool about it. But that’s something I need more support in than, say, having a job. So I like support needs, because it really does kind of stratify by context, more so than anything else, whether how visibly are evidently impacted somebody. So there are things that I struggle a lot with. And then there’s things that I’m really good at, just like anybody else. So I think that when we use support needs, and I kind of wish that the medical community took this on as well, especially at the kind of screaming from the Autistic community in the neurodiversity community more broadly. Because then we actually know where people need support, and we can help them get support, because all of us have a support and services gap. That’s kind of what I’ve noticed. And I really want that gap, of course to go away. I know it’s not an overnight thing. Politics are what they are. And money doesn’t just get free flowing and approved all the time. And we know that there’s labor shortages, and not enough people working in direct services, there’s all sorts of policy considerations here, but even just not stratifying it by who needs services, or get support when all of us have this need? I think that would be a really great thing to see in the new year is actually getting people to support and help that they need, whether they are kids, whether they are adults, whether they are families.
LB:
Right, and you know, I don’t, labels are not helpful descriptors are helpful. And and, you know, you’re you’re trying to help people manage certain behaviors or situations or things like that. The label doesn’t really give you any more information about that whatsoever.
HM:
Exactly. That’s why That’s how you support needs. Like if you talked about me, you’d be like, instead of going Haley is high functioning, which tells nothing, right? Haley is relatively independent, she lives on her own, she has a job, she blah, blah, blah, but she struggles with making friends and sometimes executive executive functioning and has hired and also like, parking, like if those couple things you’d be like, okay, so she needs more support and those like three things on the other stuff. I don’t know. I know that we’ve talked about parking multiple times on the show. And I remember, I remember asking Temple Grandin about parking and driving and she tried giving me advice and I think she told me I don’t remember if it was she who told me that this is just my memory kind of failing me but something about like finding like a very open field or something to practice. And it’s like we live in Florida. They’re no open fields.
LB:
She did. That’s exactly what she said open fields. Exactly. Our big open field is the Everglades and you could drive a boat, but not a car.
HM:
Exactly. I don’t think my car is gonna get out of the swamp. It might get eaten by like a alligator first.
LB:
Right.
HM:
That is a memory that I will definitely cherish here on long time. Yeah, that was that was 2020
LB:
it was I think thought it was this year, but I guess not. Yeah, you’re right. Just so great. I mean, so straightforward. It’s like it’s so it’s so like, Okay, this is the answer. Okay. Makes sense. I mean, it does make sense. A Costco parking lot when they are closed. That’s what you need.
HM:
Which is like what, like Christmas Day? That’s how one of my friends learned how to drive a stick shift was in one of the like a mall parking lot on Christmas Day. And I’m like, yeah, it’s gonna go great. I’m gonna learn a whole skill set in one day. You’re Excellent. I don’t even know my name in one day. There’s at least one day a year I forget my own names. Anyway. Oh, yes. We’re also going to combat burnout in this next cup next year, because it would be okay. It would be nice to know, it would be nice to not like be like, Wait, what am I doing home again.
LB:
Okay, so that’s, that’s in 2022?
HM:
I’m rooting for us.
LB:
Okay. Combating burnout is a top priority. What else?
HM:
For all of us in danger, actually taking care of ourselves and not feeling like rest is a reward but a necessity. I think that’s on my list too.
LB:
I like it, I’m with you.
HM:
I’m trying to, I’m trying to do the more tangible New Year’s resolutions that aren’t actually harmful to us or other people.
LB:
Right. And any, any guests that you’d like to hear next year?
HM:
Oh, my gosh, I know, we already have guests planned. So I’m not going to say anything. And I’m extremely excited for them. And I’m excited for the people that we don’t know that we’re going to have, yeah, because you never know what you’re going to learn. We meet new people, we meet people who we know and have always admired for the first time and like we got to cheer for them on the sidelines. And then we got to have them on the spectrum early stage, right. But there’s so much that I get excited about when it comes to guests. Like I can’t think of one person in particular that I’m like, we need to have this person or I’m manifesting this, or I’m so excited that they’re coming. Because, because no spoilers here.
LB:
And in terms of what we can do better, as far as taking care of ourselves, I that’s a good goal. For me, I’m happy. I’m happy for that.
HM:
I think it’s, I think it’s a good one for us.
LB:
Mm hmm.
HM:
And if and I think it would also be great to hear more from listeners. So we know what they’re thinking about and who they would like to have and hear from.
LB:
Yes, and encourage everybody to write in and let us know your thoughts. And, you know, certainly, there are plenty of people in the autism community that are not on my radar. And, I mean, I feel like Haley knows everybody, but she can’t know everyone. So whatever anybody wants to hear about topics covered, we are so happy to hear from the listeners and to tell her any episode to help to help us uncover discuss an issue that people are thinking about and wanting to hear about.
HM:
Yes. We love hearing from you all. Yes, we like making friends. We like having this being an active conversation, as I know that you usually mentioned at the end of every show, right? And we mean it, we’re genuine here, we want you to engage with us. And I know that I know, for me, I’m not usually the most responsive to most things because my inbox is a black hole. But thankfully, we have a wonderful team here at Spectrumly that helps make things less of a black hole when it comes to things related to the show.
LB:
Yes, yes. Can we can we in 2022 to eliminate email altogether?
HM:
That would be wonderful. Is that a good goal? Oh, I would love to abolish email. The other thing that should be abolished in that same vein to me is things like Slack and teams and all of those, like, collaborative work software’s because they all have these, like long group chats and I can’t follow them for more than like five minutes. They’re cognitively too demanding for me.
LB:
Who are they not demanding for though?
HM:
But no one admits it.
LB:
Right. Exactly. So that’s that’s the issue, Haley. That’s the issue
HM:
And then I sound like I’m like, delusional or something. Let’s just get rid of that forever.
LB:
Getting rid of email. Okay, we’re gonna have to create a new somethin.
HM:
Yeah, we’re gonna need something to get rid of email. I’m not about getting rid of zoom though.
LB:
No me neither.
HM:
I like zoom.
LB:
I do too.
HM:
We can keep zoom. Okay?
LB:
So the internet will live on just not emails.
HM:
Email can go somewhere else.
LB:
Great. All right. If you want to communicate with me, you need to have a conversation, either zoom or on the phone.
HM:
Or text me you call me be. It’s like call me beep me if you want to reach me. That’s like so now I feel like that’s very 90s Oh, well. You know what? We need to have a throwback episode next year.
LB:
Yeah, that’s a good idea. I like it.
HM:
Like, really should just like revisit the autism community of the 90s and see how much has changed because everyone complains that there’s no progress. The 90s was a very different time.
LB:
A very different time. We can have temple back on.
HM:
Exactly in the best thing. If we revisit the 90s You don’t have to bring back some of the really weird trends. Because nobody has to see us.
LB:
That’s a good point. That’s a very good point. We don’t have to wear the horrible clothes.
HM:
I feel like I’m starting drive this train into a weird direction. Are we still on the rails?
LB:
I told you I keep it on the tracks. But I guess I lied.
HM:
You could tell that we just genuinely enjoy each other and have fun. So that’s always nice. Yeah, that’s really nice. You got this and so does everyone else who’s listening to us. So I know we’ve talked a lot about uncertainty and difficult feelings throughout this year as well. So if the holidays bring up feelings of joy, complications or whatever we are here for you and sending you nothing but love and solidarity. So however you celebrate and whatever you celebrate, I hope that this holiday season is as peaceful and stress free for you and that we welcome 2022 with open arms and as best as we can to cope and I don’t know if it’s going to be our year but it’s going to be a year that is a new chapter and a new leaf turnover. That being said, I think that is a decent note to close on. Be sure to check out different brains.org and check out their Twitter and Instagram @DiffBrains and look for them on Facebook. As for me, you can say hello to me at HaleyMoss.com Or you can find me on all major social media I do Facebook, Twitter and Instagram.
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.
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.