Navigating Autism Acceptance Month | Spectrumly Speaking ep. 127

 

 

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IN THIS EPISODE:

(AUDIO – 24 mins) In this episode, hosts Haley Moss and Dr. Lori Butts discuss tips to keep Autism Acceptance Month a positive experience for self-advocates.

 

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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. 

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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, attorney, advocate. And I’m also autistic. I am lucky to get to share the Spectrumly stage today, going guestlist with none other than my co host…

 

DR LORI BUTTS (LB): 

Hi, I’m Dr. Lori Butts. I’m a psychologist and an attorney. How are you, Haley?

 

HM: 

I’m doing good today. It’s just you and I. So we get to enjoy each other’s company more than usual.

 

LB: 

I’m thrilled, it’s always nice to do that. It’s always nice to have a guest, but it’s always nice to check in with you as well.

 

HM: 

Yes, and everything here is going pretty well, it’s ramping up. So as we know, today, we are getting ready for Autism Acceptance Month, which is right around the corner. Or chances are, by the time that you’re listening to this, we’re already in the thick of it, right. And something that has come up at least in the last couple of acceptance months, is how difficult at times this can be for the autistic people and the advocates in your life. Or if you are an autistic advocate or self advocate, this can be really a tough time. And we want to be mindful that and talk about how we can take care of ourselves throughout April.

 

LB: 

It’s really important because there’s so many demands and April and, and, and so many new kind of experiences. And I mean, there’s just so much that it’s important to not just kind of fly, let it fly by but also enjoy it and take care of yourself.

 

HM: 

And I think some of the first things that happen, at least for a lot of autistic people, especially if you are active online, or you are active in your school community, or wherever it may be is as a self advocate, you often get asked a lot to talk about your experiences in April, and more so than at other times of the year. So if you are someone who gets requests to share your story, or to participate on a panel or in a kickoff event, or some kind of awareness slash acceptance event, be mindful of how that can affect you. And I say that because there are people who are looking for you to volunteer who may not always have the best of intentions, or it’s work that if you may have not been a self advocate, or you might not have thought about it should be paid in somehow isn’t I am in the situation right now where for one of my clients, we are organizing an event and we were going to get or we are going to get several self advocate speakers. And before they even started reaching out to potential speakers, I said, You do make sure you have a budget to pay these people for sharing their stories and their time with you. And I know that’s something that comes up a lot at this time of year, especially because autistic people are historically underemployed or unemployed. And sometimes sharing our story, especially during April can feel like labor, I wanted to kind of bring that up. I know that’s not really the direction people expect me to go and when we talk about this, but sharing stories, especially if it’s not something you’re comfortable with, or if it is your job, or maybe if it’s something you do voluntarily, think about how you feel about it. If you want to commit the time, if you’re being treated fairly or compensated fairly for your time, I just wanted to kind of throw that out there. And it’s okay to say no to things. If you feel like you’re burning out or you’re over committed, or it just feels painful to share your story. Or you don’t feel comfortable with an organizer of volunteer or this situation. You don’t have to do it just because it’s April. And just because you’re being pegged as a spokesperson of sorts for Autism Awareness Month or Acceptance Month, depending on how you like to view this time of year.

 

LB: 

There’s so many layers to what you just said, Haley. Um, you know, it’s, it’s interesting, because I can imagine that it’s very difficult. Well, it. I mean, there’s so many layers of difficulty, but the first one I wanted to talk about was asking for compensation for a speaker fee. That’s that that is a very complex self advocacy piece. That I’m sure it’s very difficult. What the first time how about this the first time you asked for that? Do you remember what you know, what did you get the courage to? Or what did you do to be able to do that for yourself?

 

HM: 

Honestly, at the beginning of my career, so to speak, so I started speaking about autism when I was in high school, and I never would have thought about asking for money, mostly because it wasn’t my job, my job was being a high school student. And at the time, because my studies always came first, I would kind of parse out where I wanted to speak at the time. So I’d get asked for like colleges, universities and nonprofits, mostly when I was a young person. And what I would do is think, Is this someone that I would like to donate my time to, because I purposely wanted to donate time and I always no matter what, even at this point in my career, where I do get paid to talk, and I do get to do a lot of paid events and whatnot, I will carve out time for things that I consider pro bono activities. I know that probably sounds extremely like lawyer speak, saying pro bono, but things you will electively voluntarily do for free, for those of us who are non lawyers, or pro bono free stuff, is pick something you genuinely feel confident and passionate about for that. So for me, those might be things with like, different brains or things with like you, um, card places that I’ve served on the board or places that I feel so strongly about the mission, for instance, that I’m willing to do that. I think that’s a really great thing, if you’re getting started. Or if you want, it’s also okay to be selfish, if you’re just making those decisions to. And when I say it’s okay to be selfish, you can also think of not only how does this benefit the audience, which is what the ask is on you is that you’re going to tell your story, people are going to be inspired, or they’re going to learn something. But also think about this selfishly. And I know that sounds kind of scary to admit. But think of what am I going to get out of this? Do I genuinely care about this cause? Do I want to practice telling my story? Do I want to see if this is something I enjoy? And then you can kind of bring that into your analysis. As for asking something that I did, the first time I asked was because it required travel. And if it requires travel, you should not have to go out of pocket essentially, to travel somewhere you’ve never been with people you don’t know, it just sounds exhausting to say the least. And it sounds like a really big ask if you’re just expecting someone, especially an autistic person or a disabled person to do that. So if you feel comfortable, or say that you can always do follow a script of sort, like, that sounds wonderful. I’m wondering if this is a volunteered or paid opportunity. And that’s how you leave it, have a number in mind or see what seems to be standard within kind of the realm of your community and you can have something to go off of from there.

 

LB: 

That’s a great way to do it. That’s a great skill set, just and then you can decide if it’s worth the energy, like the self, air quote, selfishness part. If it’s worth, you know, the energy, the time, all of the other pieces that go with it and decide if it’s, if it’s in your best interest to do it,

 

HM: 

and you’re not a bad person, if you say thank you for the opportunity. But unfortunately, I can’t for whatever the reason is, or just know, that does not make you a bad advocate. And that does not make you a bad person. I get requests that I say no to regularly because it’s either outside of my wheelhouse. I don’t have the time, I don’t want to volunteer or just isn’t something that I’m a good fit for. And that’s okay.

 

LB: 

But you’re exceptionally kind of confident in that space, don’t you think?

 

HM: 

Not necessarily. Because the things that are I hate saying no to people, because people, it’s scary to reach out to people sometimes for the first time. So I really feel for organizers who reached out to me or media personalities, or podcasters, who want to talk to me. And I can’t always say yes, or find a time or a lot of times I’ll say, this sounds great. Maybe we can do this when things slow down outside of April, or if it’s something, say, in particular, something that comes up is every once in a while there’s a podcaster who will or somebody who wants me to talk about dating and relationships. And if you’ve ever interacted with me in person or online for any length of time, you know, this is a very firm boundary that I said is I will not talk about current or former partners that I’ve had, it’s not fair to them. They didn’t consent to this. And also I just don’t feel comfortable having those conversations with the public. So I’ll get invited every once in a while to talk about relationships, I set a hard and fast rule no matter who you are, the answer is going to be no. Because I don’t feel comfortable with that. Or I’ll say I only feel comfortable talking about relationships in a very general sense of that you need to talk about like communication autistic people deserve love. If that’s okay, then we can proceed. If not, then I’m sorry.

 

LB: 

That’s the other piece, right? So frame boundaries. Yeah, setting boundaries and knowing, you know, somebody can say, oh, we’d like you to come speak it at our function and not give any direction and then you show up and it’s something you know, you don’t you don’t communicate well and get on the same page with that person, about what what’s expected. And then you could be surprised. So it’s important to get everything…

 

HM: 

I’ve had that happen, and this is my job. And I’ve gone to conferences where they didn’t flesh out what the topic was that I would be speaking about, and I had to kind of just hope for the best based on things that I’ve done before. I’ve had, I’ve had that happen, and it’s very frustrating. And sometimes ironically, and you’ll probably learn this too, if you’re self advocate is the people who have the most experience with people with disabilities are the ones who often make the most glaring oversights. Really, really, so the biggest oversights that I’ve had in terms of planning have always somehow come at the behest of either educators or people in Disability Services. Think about even zoom events that sometimes it’s people with disabilities or disabled, not necessarily, or or, excuse me, organizations that assist people disabilities, that it’s like, Hey, do you have closed captions on your zoom. And of course, also, think about this with in person vers virtual stuff, because if you’re in person, and you don’t feel safe, because of COVID, because of anything, that is also super valid, you do not have to compromise your comfort level to make other people happy in that case. And you can always gently explain the I’m sorry, but um, I don’t feel safe right now. Therefore, thanks, but no.

 

LB: 

And how about this, what, you know, self advocates can also delegate those, that to somebody else in their life, you know, if they’re not comfortable doing it, maybe have, you know someone in their life that they’re working with or supporting them, to, to negotiate these, you know, if you’re not comfortable doing it for yourself, but have it have somebody else negotiate for you. I mean, I think that’s also a strategy.

 

HM: 

Absolutely and if you if you really want to make sure that you have good relationships, too, and you know, this is something you absolutely don’t want to do. Don’t be afraid to recommend another person.

 

LB: 

That’s a great point.

 

HM: 

If you know somebody who is a passionate advocate and might not get that opportunity to share their story, but really wants to maybe tell the person who asked you to share yours like, hey, unfortunately, I can’t. But my friend, Dr. Butts here, for instance, is a really gifted and knowledgeable psychologist, and she has a lot to contribute to this, you should reach out to her.

 

LB: 

That’s a really good skill set too.

 

HM: 

It’s one of the easiest network weaving things, and your friend who you refer will thank you. And also the organizers will be glad cuz you just made their job easier. While you graciously said no. And if you’re really that person, too, because I know there are times I’ve referred people, and they’ve also referred me. And usually it’s a really great networking tool and also helps build those friendships. So I know that there’s people that we’ve worked with that I’ve had that happen with and people that I don’t know, who I’ve either referred or whoever referred me and it always means a lot that someone else trusts you.

 

LB: 

Right. Now, I know in the past, we’ve talked about how April comes and goes, and everybody’s got all these great intentions, and then and then April ends and it’s kind of crickets, is that still kind of the situation? Or do you feel more of a momentum kind of?

 

HM: 

I’m regularly surprised as much as I don’t like the concept of acceptance and awareness month more broadly. I’m always surprised there isn’t spillover from April into May primarily because May is billed as Mental Health Awareness Month. I always find that really surprising since a lot of autistic people do also have co occurring mental health issues or other forms of neuro divergence that might be covered under Mays purview, that personally always somehow surprises me. But I do think we need to keep the momentum going all year long, not just when celebrities say hey, by the way, I’m autistic. And also not when something tragic happens within our communities. That is something that still happens. And I think also, for a lot of us, don’t be afraid to unplug for a couple days, either during April or right after it can be really scary and really hard. When you see everyone for instance, on April 2, which is World Autism Awareness Day, either posting puzzle pieces or light up blue or neurodiversity, infinity symbols, and either the it’s a hollow intent, or it’s well meaning but misguided, which happens more often than not, it’s either one or the other. And you don’t want to sit there just be screaming about it on social media or just feel a lot of feelings about it. So don’t be afraid to unplug either. Or talk about it with people who you care about in if it is someone that you care about that saying something problematic, then call them in and have a private conversation.

 

LB: 

Do you get support from other self advocates in this whole process?

 

HM: 

Honestly, I’m pretty sure every single self advocate I know either says that they’re tired or they’re busy. And I think a lot of us want to know that it’s not just an us thing. So we do get that support. But I think as far as supporting each other I think some of us are just trying so hard just to support ourselves and so way, shape or form, because April for a lot of people can be very either celebration, or it can also be very distressing. Yeah, and I think the truth, to be quite honest, is probably somewhere in the middle, at least for me that there are times it’s very stressful, it’s very busy. But I’m also glad that people want that otherwise might not engage with these topics or having these conversations or at least attempting to. So for me, it’s kind of that somewhere in the middle, but I do need to take time for myself and try to make that hour a day or some form of time that I can regulate. I know with Zoom, it’s a lot easier because even when we’re doing meetings, or we’re doing other things, I can at least kind of I can stim throughout, because not always are our faces showing her full bodies. There’s all sorts of different things that we’re able to do to cope. And if you also have a day job, as many of us do, understand, and don’t be afraid to take a mental health day, if you need it, please take care of yourself. First and foremost, you do not have to be on all the time, whether it’s at work or autism events, or if work and autism events go hand in hand. I know especially if your workplace is doing something and you’re an autistic adult, that you will probably feel an inordinate amount of pressure to either help with that, or performance that. And if you feel that even though you have no way out of it, and you or you don’t want to do it, or maybe you do, just be kind to yourself throughout that as well.

 

LB: 

I have another thought. And I don’t know if I’m right or not, not if I’m right, but I just you know, I feel like but it might be because of my bias in this space and doing this podcast with you. But I feel like autism has so many out front self advocates more than any other neurodiversity.

 

HM: 

We don’t get to talk to the ADHD-ers here. And we we probably should, because there’s a lot of fantastic ADHD-ers. A lot of other fantastic mental health people that you’re with. But yes, there’s a lot of front facing content creators, I really, when it does come to neurodiversity more broadly, probably because it’s something that we’re not so great about talking about as a society. I think autism, we know all the forward facing people because we are lucky enough to get to talk to them.

 

LB: 

Right. And there’s just I mean, it’s one incredible person after another. And I can just imagine that in April, the convergence of the wonderful people that we’ve met out there, across the country is a very powerful experience for whoever’s listening and paying attention. And it’s, I mean, it’s exciting for me to see all of all of you do what you do in such an eloquent beautiful way. But again, we’re talking about how important it is on the backside for all of you to take care of yourself and make sure you set boundaries and are taking good care, good care of yourself and doing things that you want to do not feeling pressure to do things outside of what you you know what you’re passionate about.

 

HM: 

Yes, and a reminder because I know a lot of our guests are people who are very active online too: We are human beings and not just resources or social media accounts, sometimes is a very hard thing for people to separate, especially if you’re someone who makes like slide based graphics or TicTocs or something that seems very constant and consumable is there’s still an actual person behind that. And please be gracious with the actual people because they are people and they’re they have feelings and lives and all sorts of other things outside of the internet. So please be nice to them and do not demand that they put up a ton of things for your education as well throughout April It’s a difficult thing having to come up with educational materials I like sometimes I come up with stuff in April other times I don’t and that’s okay.

 

LB: 

Yeah, and that’s a whole nother layer right of the of the internet and social media and the pressures within that realm is just exponentially different and difficult. Beyond like the face to face like speaking engagements and things like that the Internet creates a whole nother layer of, of how to weed out negative and mean things and how to stay on top of the positive and focus on the positive things that you’re doing and people are saying.

 

HM: 

Yep, I think we got this.

 

LB: 

I know you got it.

 

HM: 

I just want to root for everybody. I don’t want this to be difficult for everyone.

 

LB: 

Yeah. And and again, it’s it’s balancing, right? It’s not it do what you the message I’m hearing you say is do what you want set boundaries, advocate for yourself even in your speaking engagement even in preparing for those engagements and take time to make sure if you’re getting burned down to say no.

 

HM: 

Exactly. And I think saying no is kind of one of the most powerful acts of self advocacy you’ve gotten your toolbox.

 

LB: 

Absolutely, absolutely.

 

HM: 

“No”s are advocacy whether or not you think they are right. And I think a lot of people don’t want to believe that. Well, then they can reason that advocacy has to be this big scale educational experience. I don’t use this time to really hate on April because I know people are very different places in their journeys, too. So I know that every time we talk about April, somebody wants to go, what about the puzzle piece? What about the infinity symbol? What about this? What about that person, first entity first… Okay, we talked about the stuff all year long, number one and number two, April is a journey for different people. Some people might be having their very first experience bringing awareness to their own stories or their family stories. So please be gracious with everyone, no matter where they are in their learning. Things have been changing over the last couple years. And that’s a good thing. Change is good. And we’ve been doing better, hopefully getting more accepting. It’s just that hopefully we can keep moving that needle forward in the future. So no matter who you are, I wish you a safe, hopefully engaging and educational or reflective or relaxing autism acceptance month.

 

LB: 

Beautiful, well said.

 

HM: 

Because at the end of the day, it is a celebration. And sometimes it’s the only time that people really want to engage and ask questions. So sometimes that’s a really good thing. So I want to be positive about April, even if April is essentially a exhausting event for so many of us.

 

LB: 

But exhausting in a good way…

 

HM: 

Yeah, I enjoy it, mostly. So that’s okay.

 

LB: 

But that’s all it matters.

 

HM: 

I just wanted to throw that out there. And I hope that nothing that I said gets construed as I hate April are fine as a brain drain, because that’s not really how I feel.

 

LB: 

No, no,

 

HM: 

I really feel conscious as I talk about that.

 

LB: 

No, no, that’s not I don’t I didn’t get that message at all. No, it’s just, it’s balancing.

 

HM: 

Thank you. So I think that’s probably a great place to end on as we want your APR to be informative, engaging, safe and restful or however, would best feel that it will suit you. As the rest of us. Please be sure to check out and follow different brains you can find us at differentbrains.org And don’t forget to look for us on Twitter and Facebook and also Instagram. We’re @DiffBrains on Instagram and Twitter. If you’re looking for me, please be sure to say hello at Haley moss.com Or you can find me on all major social media as well.

 

LB: 

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