Cover Image - Becoming A Neurodiversity Self-Advocate, With Siena Castellon | Spectrumly Speaking Ep. 116

Becoming a Neurodiversity Self-Advocate, with Siena Castellon | Spectrumly Speaking ep. 116

 

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  IN THIS EPISODE:

(AUDIO – 40 minutes) In this episode, hosts Haley Moss and Dr. Lori Butts speak with self-advocate Siena Castellon. Siena is an autistic neurodiversity self-advocate. She is the author of The Spectrum Girl’s Survival Guide: How to Grow Up Awesome and Autistic. She is also the founder of Neurodiversity Celebration Week.

For more about Siena:

neurodiversity-celebration-week.com 

qlmentoring.com 

Photograph of Siena by Dagmar Castellon


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 and attorney, author. And I’m autistic. And today I’m joined here by… 

DR LORI BUTTS (LB):  

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

HM:  

How are you? Happy Friday. 

LB:  

How are you?

HM:  

I’m good. I realized that I almost never say Happy Friday. So if you’re a new friend of the show, you’d probably know that we — or maybe not, we record on Fridays. So it’s always one of the most exciting parts of the week.

LB:  

Yes, it is. 

HM:  

Everything good. where you are? 

LB:  

Absolutely. How about with you? 

HM:  

All good here, too. Just getting all geared up to do all sorts of interesting programs and putting things together and just trying to breathe a little bit. I get a little bit of time off. 

LB:  

Oh, good. That’s great. I’m glad to hear it. 

HM:  

I get to see mom and dad. 

LB:  

Nice. Good. 

HM:  

So we get to go back to our regular type of programming today, which is always very exciting. So we actually have a guest again.

LB:  

So great. 

HM:  

We love guests. And are you ready? 

LB:  

I’m very ready. Yes, absolutely. 

HM:  

So today, we are welcoming Siena Castellon, and Sienna is an autistic neurodiversity self advocate. She is the author of the “Spectrum Girl Survival Guide: how to grow up awesome and autistic”. And she’s also the founder of Neurodiversity Celebration Week. Welcome to the show! 

SIENA CASTELLON (SC):  

Hi, I’m so happy to be here. 

HM:  

We are so happy to have you. So as we usually like to start out, can you share with us how you became involved in the autism community?

SC:  

Yeah, so I was diagnosed as autistic when I was 12. And it was a very long road to get diagnosed, all the signs were there. But it was just that the education system didn’t pick it up. And my parents weren’t educated on autism. But once I was diagnosed, I started looking online and trying to find resources. And I found that there really wasn’t anything. And so I decided that I had to get involved in the autism community start putting resources out there and educating people, especially on how not just autism but how autistic women present in particular.

LB:  

So I’m assuming that’s what led you to becoming a self advocate?

SC:  

Definitely, it was my experience that really drove me to become an advocate, not just in the autism community, but in the wider neurodivergent community.

HM:  

And with your advocacy, you wrote a book while you were a teenager, which is so cool. And I love that. And can you tell us more about the “Spectrum Girl Survival Guide”? 

SC:  

Yeah, so my first book, “Spectrum Girl Survival Guide: how to grow up awesome and autistic” — that was the book that I wrote when I was 16. And I was at school at the time, I was managing what’s different elements of my advocacy work, on top of preparing to go to university and taking big exams, that are in the the UK education system and preparing for that. And a publisher reached out to me and asked me if I would be interested in writing a book. And they said, you know, it would be really beneficial for you to write a book about autism and women because we know that that’s something that you focus a lot on. And I thought about it. And my initial response was absolutely not. I’m in school, I’ve already spread really thin. And I was at a time in my education where I really needed to be paying attention to my school, and especially when you’re neurodivergent, and you’re juggling dyslexia, dyspraxia, ADHD, autism in the school environment, I felt like I really had to be invested in it. But I decided just out of curiosity to go online, and see what resources were already out there for autistic girls. And I knew it was dire before I went on. But looking at it, it was so much worse than I initially expected. I ended up buying books that were written for autistic girls. And the advice in them was abysmal. There was advice. There was a quote that I love that was “try not to let your sensory processing disorder bother you”. The author thinks that I leave the house and decide I’m going to let on the tube cause a panic attack. I want this to happen. But it was advice in there where it was so clear that yes, this person may have gone to university and studied how autism affects the brain, but they don’t have lived experience and they don’t understand the reality of being autistic, especially being an autistic woman. And so I knew at that point that I had to write my book, and I wrote it and it was released. And since then a lot of people have reached out to me and said that they found it really beneficial and that it’s helped not just educate them on their autism and giving them advice in the school environment or in the social environment, but that it’s also helped their neurotypical parents and family understand them. And that’s something that, you know, when I wrote the book, I wrote it in a 16 year old, who understood my autism and knew how to articulate it and explain the way I act, the way I feel the way that and where my behavior stems from. But that’s something that I absolutely wasn’t able to do at 12, I wasn’t able to explain to my family why I was the way I am, it was just this is who I am. And this is the way I behave. But the way that I articulated in the book, a lot of people found that very beneficial, a lot of neurotypicals were that able to support their children or their relatives who are autistic women, and a lot of autistic women read the book and are realizing, okay, that’s articulated in a way where I now understand it. 

LB:  

I find it so fascinating that first of all, I thought Haley was such a young author and writer. But now, Sienna, you wrote this at 16. How, what was that process like for you? That’s amazing.

SC:  

Yeah, I mean, it was it was a gradual process, because before I’d written the book, I’d I put your mentoring out there. So qL mentoring was a website that I started when I was 13. And it was a website to support and mentor children with autism and learning differences. And so I had experience in writing, because I’d written lots of articles for that website. And then people had contacted me and asked them to write articles for their magazines and for their newsletters. And so it wasn’t a completely foreign experience, to write about neurodiversity, and to articulate ops in a way that people can relate to, and people can learn from. And for me, when I started writing the book, I really springboarded off the experience that I had in writing articles, and I split each, I split my book up into chapters. And so I would write it, I would write each chapter like I will read writing an article on the subject, and it was just a particularly long article. And that was the way that I found it most beneficial to write because I didn’t have any experience in writing a book.

LB:  

Wow, that’s really mature and a great strategy and pretty amazingly impressive. I, I very, I can’t even imagine writing a book and I’m like, triple everybody’s age here. That’s really, really amazing. Congratulations. 

HM:  

I think that’s the way to do it, honestly, is looking at it, like you’re writing a bunch of articles, it makes it a lot less stressful, because when you see that word count that a publisher might assign to you. So maybe it’s 50 or 60,000 words like, how am I ever going to reach that? 

SC:  

No, I can completely relate to that. When you’re like, Okay, whatever, there’s like 200 pages I’ve got to put together it’s very overwhelming, but when you break it into, okay, I’m just gonna do 10 it’s much more manageable. 

HM:  

Absolutely. And I know that at least when you’re in the proposal process, sometimes it makes you outline it. So it makes it easier to kind of be like, Okay, this is what I need to write about. And I can make it as long or short as I need to and other places I can make up for it. So I personally never thought about word count in a book and tell the way it ended when I feel like I had everything somewhat covered and then realized, okay, maybe I didn’t cover it as thoroughly as I should have. At least that’s how I saw it. Because I know the last book that I wrote, they gave me word count of that you have to hit not like 200 pages, like oh, you need to write this amount of words. And it equates to this many pages based on how we typeset it and I’m like, yeah, that just sounds like a lot. I’m just gonna do the best I can and go topic by topic and pray it turns out, but it’s really stressful. And I appreciate you talking about being a teenage author, because that’s an experience that I had as well. And balancing that, while you’re in school is a special brand of hectic and possibly miserable times.

SC:  

Completely. I mean for because a lot of authors, you know, they do it as their full time job. And so they, you know, wake up in the morning and work nine to five on that book, but I’m at school nine to five. And so if I had to spend a lot of my summer holidays and Christmas holidays, sitting down and working at it, and you know, doing okay, I’m going to write my book for two hours, and then I need to go and I need to do my math. And I need to do this homework assignment that I’m going to go back to.

HM:  

Yep. I remember doing a lot of writing over the summer. Pretty sure I had to do almost an entire manuscript over the summer at one point.

SC:  

Yeah, definitely, definitely been there. But when you at least in my experience, and I think that this really stems from my ADHD and my autism, I get this hyperfocus and so I will sit down and that’s the hardest part, and then once I sit down at up for like, eight to 10 hours, I just sit and I work.

HM:  

I’m guilty of the same exact thing. And it’s worse when you’re like, I was here for 10 hours, and I didn’t eat today, because somehow the interoception doesn’t register, you’re also hungry. That happens to me. 

SC:  

That happens to me all the time. And that’s when it’s beneficial to have a neurotypical in your life. I guess, like my mother, she’ll show up. Even today, like: what’s going on? It’s only then that you realize, okay, I need to take a break from this. But if I will have my own devices, and she tells me frequently, like, if you’re left to your own devices, you’re going to be a mess.

HM:  

I’m currently left to my own devices, and I’m still a mess. I don’t want to give you a glimpse into this. I have other neurodivergent people. So my mom’s actually neurodivergent. And she’s kind enough to not have a neuro diversity that makes her forget to eat. So she’ll always remind me and because my mom is also very nervous mom and a very conscientious parent, she’s like, hey, Oh, are you gonna go sit down for dinner now even though like, I don’t know what I’m doing? She’ll be like, Yeah, let’s do it.

SC:  

Definitely, I’ve got kind of a mother like that, who frequently checks in and it’s, she does say, you know, there is a part of you, where you are very kind of switched on and a type and look after yourself, they don’t have to worry about you. But the second that you get kind of into something that you’re working on. That’s when, like, you need to be, like, managed and watch and need to look after you. 

LB:  

I mean, it sounds to me that coming as a neurotypical as a superpower, but and so and so, you know, there’s in learning about all neurodiversity. I there’s so many positives, and so it’s it’s wonderful to see that you started Neurodiversity Celebration Week. Can you talk about that, Siena? 

SC:  

Yeah, so Neurodiversity Celebration Week is a week to flip the narrative and focus on the positives of neurodiversity instead of the negatives. And so I have a website: www.neurodiversity-celebration-week.com. And on that website, schools can sign up for the week. And they can also download resources. And that’s something that when I set up the week, I made sure to do that each school could run neurodiversity celebration week as they chose to. And so for some schools, they’ll go on to my website, and now download a few posters, and they’ll put the posters around the school. And they’ll get an assembly plan, and they’ll run an assembly and maybe talk about it a bit in class. And that will be what the week means to them. Whereas other schools, particularly kind of primary schools, that have more time in their schedule, will dedicate a whole week to it. And they will use all of the activities that I have on my website, there’s one activity that everyone loves, it’s this one, where the teacher will split the whole class into groups and give them the task of cutting out shapes. And the group that cuts out shapes, the fastest wins. And all of the groups apart from one have a disadvantage. So they’re blindfolded or they have a hand tied behind their back. And it’s always the group without the disadvantage that when so that cuts out the shapes the fastest. And they celebrate their win, and they’re rewarded for their win. And then the other group say, Yes, you did it the fastest. But we put in a ton of effort. We showed really good teamwork skills, we showed really good creativity. And that’s not being appreciated. I feel like we should get we deserve a little bit of appreciation for the fact that we created this crazy system to cut shapes with one hand tied behind our back. And then the teacher will say, Well, yes, that’s what it feels like to be a neurodivergent individual in the school system. You will put in a lot of time, you will use a lot of creativity, you’ll have all these other skills, but chose not to care. They just care about the grade, you know, and it can be very beneficial sometimes for neurotypical students to kind of understand our experience and how a lot of us go through school without feeling appreciated. And yeah, it’s a great activity that a lot of people have tried out and have really learned a lot from.

LB:  

That’s such a great experiential activity to really you know, drive it home, you can tell you can talk about it, but when you experience something like that, that really can be a big change in someone’s life to kind of really understand the experience.

SC:  

Yeah, definitely, because I find that with some neurotypical students, when you explain how, you know, neurodivergent individuals, you know, they put in a lot of a lot of the time for a lot of effort, they have all of this creativity, a lot of the time neurotypical individuals don’t quite get the extent to which we’re talking about. And they think, well, I can relate to that I can relate to being creative, I can relate to putting in effort and then not getting the grade I want to get, but it is to a different level. And I really saw that going through the school system, where vividly this was an experience that I remember, I, we were given a list of vocabulary that we had to learn. And then we had a spelling test. And we were given it two weeks in advance. And I spent every morning while I was getting ready, my mother would quiz me on the words, and I would practice them, then we would practice them in the car, we would practice them when I got home from school, we put in so much time into learning these vocabulary words. And I show up to class to take the test and we’re standing outside the classroom. And somebody comes up to me and says, Oh, my gosh, do we have a spelling test? I had no idea I completely forgot. Can I borrow your words just so I can look at them. And they looked at them for maybe a minute. And then the teacher called us into the classroom, and we took the test. And that person got double my score. Without preparation, just looking at the words, you know, for a minute beforehand. And I remember feeling just so demoralized by the amount of effort I put in and how I was called into my teacher’s classroom afterwards. And she told me that I couldn’t have studied and gotten that score. It’s like, that’s the context of of why. But throughout my education experience that happened for all of my neurodiversity, so whether it be for ADHD or autism, I just had a really difficult time and having teachers not kind of understand me getting grades that I didn’t deserve. And that’s something that in neurodiversity celebration worker, I wanted people to have an understanding of teachers and students.

HM:  

Wow, I just keep thinking about how you’re way cooler and way more self aware than I ever could have been at your age. And I’m just completely admiring you. I’ve always been a fan, but I’m just just listening to you makes me more of a fan.

SC:  

Thank you. That means a lot. 

HM:  

So I have to ask what goal, what are your next goals? What’s next? Because somehow you’ve already done so much like, what what comes next? 

SC:  

Yeah, well, I’m really kind of playing it by ear right now. I’m going to be going to university in September. And it’s after taking a gap year and dedicating my gap year to doing all of my neurodiversity work. And so I’m going to be kind of taking a step away from that to focus on my education, I want to get a degree in mechanical engineering, and go on to to be a mechanical engineer, and hopefully, in its own way, have my own company, because through running Neurodiversity Celebration Week, I’ve really understood my own neurodivergent. So how it affects me, and especially with my ADHD and my autism, I have the weirdest working hours where I won’t be productive for the whole day, but then I’ll work all night. And, and it’s something where I think that I could really benefit from being my own boss. And so that’s something that I’m trying to set myself up to do. 

LB:  

Wow, that’s pretty incredible. Amazing. 

SC:  

That’d be a long way away. That’s like 10 year plan.

LB:  

Well, I don’t know, I you’ve accomplished so much in such a short period of time. I don’t think it’s gonna be take 10 years for you to get there. I think it’s, I think you’re on a fast track. 

SC:  

Oh, thank you. 

HM:  

I mean, my my 10 year plan definitely didn’t have a 10 year plan. And I don’t think I still have I don’t have a 10 year plan at this point. So I love that you know what you want. Because when I was first entering my experience in college, I was like, I think I want to be a doctor. And then it took me six weeks to realize maybe I don’t. Back to the drawing boards. I had to figure out what I want to do when I grow up. I didn’t even know what I wanted to do. I just knew like, I had to do something. And I couldn’t have predicted I would have ended up being my own boss at 25. I think I was I just didn’t expect it. So I love that you know what you want, though, because I certainly was figuring it out and playing it by ear the whole way. I felt like 

SC:  

No, I mean, it’s one of those things when they sometimes I’ll know what I want, but that just doesn’t work out. So I’ve spent most of my life kind of making my plan B work, whether that be with school, most of the time with schools, to be honest. And so I am kind of hesitant, but that’s something that yeah, I mean, I know that would work for me. And I’m hoping will happen.

LB:  

Right? You can’t predict what comes along the way. That’s the plan. But certainly, as we know, things, things happen and things change. And speaking of which, just kind of to circle back a little bit Siena, what have you seen in terms of changes in awareness or an acceptance since you started advocacy for neurodiversity?

SC:  

Um, I’ve seen change, but it’s been gradual. I found that teachers a little bit more understanding. I’ve, when I was younger, I mean, like 10 years ago, teachers would say things that were horribly wrong. One teacher told my mother that I couldn’t be dyslexic because I could read. One teacher told my mother that girls can’t be autistic, and things like that. And I haven’t heard that kind of commentary for a while. From the people that I’ve mentored and support the younger people that I’ve worked with, they still face about a stigma, a lot of prejudice. But there is that baseline of understanding and interested in knowing a little bit more about neurodiversity. One thing that I will add is I have seen a lot of change very rapidly within the last year. And I think that some of it doesn’t quite come from a place of acceptance and support. But especially with the Black Lives Matter movement taking off and people becoming more, I guess, use the term woke. When I was younger, I would be called awful names, I was told that I didn’t belong in mainstream school that I belonged in a mental institution, they would call me awful things and teachers would stand by and watch it happen. And they would know that it took place because it would happen in front of them. And they didn’t care. Teachers would call me names as well, not as bad as the students. But I had teachers call me a robot, I had teachers say that I had a lifeless, off-putting expression in my face. Because I didn’t always have facial expressions. And I had teachers tell me, it was my fault that I was bullied. And I feel that now, just as a society, we’ve moved to a point where teachers would feel afraid to say that because it’s gonna end up on Twitter. I don’t think it comes from a place of caring about their students, but it is a step in the right direction. 

LB:  

Wow. And what do you think about the past year? Why in the past year, do you think it’s gone? so quickly? 

SC:  

I think it’s just been a year of big social change? I mean, but with the pandemic, people spent a lot more time online, on Twitter and talking about the issues that they were having. Um, and also, it’s gotten to the point where kind of this isn’t unique to this year, but everyone has a cell phone and everyone has access to social media. And I have heard a lot more about schools being afraid that something they say I do, it’s going to get posted online and go viral. It’s something that I’ve just heard more of, and this year in particular. 

LB:  

Well, I hope I hope more change comes soon for whatever reason, like you said, for whatever reason, forever motivation. It’s so positive for kids to not be bullied and maimed, called by peers and by teachers, that’s for sure.

SC:  

Oh, definitely. I mean, I hope that the next generation, you know, have a better school experience, because no one should have to go through what I went through and whatever other autistic individuals going through the visit really does kind of follow you for life. I mean, one experience I had was, I gave a talk and somebody who was maybe in their 40s or 50s, came up to me afterwards and shared their experience of going through school. And it was clear that even though they hadn’t been at school for maybe 20, 30 years, they were still traumatized by what had taken place. And I don’t want that to happen to anybody. 

LB:  

Yeah, that’s awful. Well, I think your work is helping move that in the positive in the right direction. 

SC:  

Well, thank you so much. 

HM:  

Oh, definitely. And it’s really interesting to hear because I think some of the changes that we’ve seen, it has also been a result of the pandemic. And also that’s really interesting about social media culture, because I was in school before social media culture happened, and you still saw stuff. And I think we didn’t have the same conversations that we did. At least don’t have the conversations we’re having. Now back then. So super interesting to see. And because we want to support you, and I know our listeners do, too, how can people find out more about the amazing work you’re doing and about you?

SC:  

Yeah, so you can go on to my social media, which is @QLmentor, and you can find me on Twitter and Instagram. And you can also go on my website, www.QLmentoring.com, and you can email me at Siena@qlmentoring.com.

HM:  

We’d love to talk more about how young people can get involved in neuro diversity and autism advocacy. I also know you do all sorts of really cool work with the United Nations and youth. And I think it’s fascinating to see more young people getting involved rather than I it’s really great to see all sorts of people getting involved, I think in neuro diversity and autism advocacy, and it’s really cool seeing later diagnosed adults getting involved. But I keep thinking about young people, and especially people that are of this new generation. So Gen Z, and whoever comes after them. So how to how young, I think about young people getting involved. And it’s just so interesting, especially because you got involved, young, I got involved young, I just think of how do people keep getting involved earlier in earlier and having this confidence do so like? I think that young people sometimes feel like they don’t have opportunities or can’t make a difference, because people always want to listen to the adults. But you have shown time and time again that people do want to know what young people are saying and feeling and let follow their lead neurodiversity celebration, which was started by a young you, you’re a young person. So I guess it’s just really interesting to think about. 

SC:  

Yeah, definitely. I mean, my recommendation would be kind of going on social media. Social media is a big gift when it comes to advocacy, because you can connect with people from all over the world. I remember when I first started my account, one of the one of my first followers was someone from Australia. And that wouldn’t have been possible if I had just been going around my neighborhood in my local community talking to people. And so I always recommend, you know, starting off with a social media account, and posting your opinions on there, and connecting with like minded individuals. And then from there, you know, you can reach a point where you can partner with other organizations whose viewpoints align with yours. I’ve partnered with UCLA Center for Research and Autism in Wducation, with GeniusWithin, I’ve done work with an amazing organization called luksic. And that was all through my social media, and through reaching out to them, and connecting with them, whether that be through LinkedIn, Instagram, or Twitter.

HM:  

So that’s something that I, I definitely recommend. I think it’s also something with social media, just to kind of clear this, just throw this out there, especially for young people, just please be safe. I know that you want to share a lot of stuff. But please be safe, at the same time that you forget community and connect to people, but do it in a safe way. If you’re under 13, please talk to your parents, because I know there’s children’s online privacy considerations. And you can’t sign up for most things. If you’re under 13. If you are again, if you’re over 13 I know you can sign up but also might be good to let your parents guardians caregivers, whoever is involved with you know what you’re doing online to keep you safe because not everybody is well intentioned and helpful. 

SC:  

Definitely, I would always say like, don’t be afraid of the block button. I just — anybody who says anything that can be perceived as remotely like hurtful, I just immediately block them. I have no time for that energy. And so do not be afraid to do that. When I first started out that was one thing I really regret I would engage with those people. And I would try to change their opinion. But now now it’s immediately block.

HM:  

I like that because I’m also sometimes I feel bad about using the block button. And I know that I need to it’s setting a boundary. It’s setting boundaries. 

LB:  

Exactly. Exactly. Yeah, you’ve got to do it’s just for for your mental health and then you’re not rewarding the person that they’re looking to engage and to and to you know, to get a rise out of you if you just block them then they don’t get that satisfaction. 

SC:  

So yeah, definitely do not respond and get into conversations with them. My first year of advocacy, I did a lot of that. No just immediately block.

HM:  

And some times other people will take care of that for you, if you have a following that they’ll be like, Oh, this is inappropriate goodbye.

SC:  

I always appreciated that. That was something that I had quite a few friends who would — friends from the community who would stand up for me. And it was always good.

HM:  

What do you think Dr. butts you’ve been, you’ve been quiet. 

LB:  

I think it’s very important to do. I mean, you guys are just amazing. I have. I’m when I was, when I was young, I wasn’t changing the world, the way that you guys have been. It’s just it’s very inspiring, you guys are, are inspirational, even for not just for young people. But for us old folks. Guys are really, really amazing. 

HM:  

I just think about keeping young people safe at the same time, because I know online, like we’re like when Stan was talking about the block button, I think about like online bullying. And I also think about like, just regular safety concerns. And just like, I just want young people to keep being awesome, but also be safe while being awesome.

LB:  

Absolutely, absolutely. And that’s the way to do it. But the blog, you know…

HM:  

Like, I wasn’t thinking as much about that stuff. Because I think when you’re young you also think you’re invincible. Especially like adolescence that you think that nothing’s gonna hurt you or that nobody online is going to hurt you because they might not know your home address. Or you just get comfortable or something. I think that it’s hard to admit like you still have to stay vigilant. And I know, hearing it from parents or older folks sometimes can be kind of uncool right. Now, like I worry about y’all. And I’m not a parent. Like full disclosure, I’m not a parent and, I now I am that person who’s talking about online safety. 

LB:  

No, but it needs to it needs to be continued. It needs to be always addressed and always talked about exactly. Whatever the message wherever they can get the message. It doesn’t matter as long as they’re getting the message. 

HM:  

So yeah, I mean, I took it seriously, because I’ve had people make me feel unsafe as an adult. So that people will comment more on what I look like, usually, adult men would be like, Oh, you’re so pretty. And it’s like, you’re missing the point of why I’m posting like, I’m not just trying to get attention. And then you also have people like, oh, let’s meet up, bring this up. I don’t even know your name. So I think having that safety talk is something that’s really important in this conversation as well. And I don’t mean to derail it in any way. With that, I just think it’s, there’s so many ways to advocate at home, online, anywhere you want. And it’s just how do we. And of course, if that’s something you want to do, I think it’s also important that you realize that things online have a long life as well. And I think it’s important for caregivers and other educators as well to get involved with that process as much as the young person feels comfortable with their as much as necessary to keep that person safe. 

SC:  

I completely agree with that. And when I first started out, I had a teacher, say to me, you shouldn’t put your, your name on social media. And at the time, it was kind of already out there. And I just left it. But it is perfectly acceptable to just be like, I’m @QLmentor, that’s a, you don’t know my name. And that’s something where, once you put your name out there, you can’t really undo that. But you can always decide later. Okay, I’ve reached the stage of my advocacy where I am gonna put my name. And you also mentioned a really good point, which is something that reminded me quite a few positions that I put myself in which looking back, were a bit crazy, where I would have people contact me and say, you’re doing really great work. I’ve nominated you for a walk up for an award, come to this address for the award ceremony. And I would show up at pretty random addresses to give speeches and Ticket Awards. And I would look these organizations up online and I wouldn’t really be able to find anything because they were very small organizations when I started off, and my mom would just drive me and we would kind of get in the car and be like right outside the address thinking is this it? This looks like someone’s house. And nothing ever came of it. I never actually got into any danger. And like me, my mom would come with me, because I was very young and how much 13. But that could have been a recipe for disaster. And so I will always say do your research. And if you are going to go give a speech somewhere if you are going to go accept a ward somewhere. bring somebody with you and let people know where you’re going. If you feel like it is safe to go there and you’ve researched. 

HM:  

Yes, definitely. I’m here for it. I think that’s also great and I’m just really excited. 

SC:  

No, definitely. I feel like there are a lot more young people that I’m seeing starting campaigns and getting involved, like seeing Greta and the work that she’s done, she’s really inspired a lot of people. And so I’m happy to see kind of what the future holds. 

HM:  

Exactly. So there’s so many different ways to get started. So whether it’s online or even, like, when you’re talking about gretta, like, she got started with just striking outside of Parliament Buildings, if I remember right to, like, people just getting involved, however they think is appropriate. 

LB:  

And I think you all pave the way for people to, to feel comfortable, you know, quote, unquote, coming out, and, you know, you know, telling the world about your neurodiversity. And being, I think it’s very, it takes a lot of courage to be open and honest. Because, again, you know, these are viewed as disabilities and, and things like that you are paving the way for that to change, but you’re breaking, you know, breaking ground every day to help that change, and that movement forward. And that’s, I mean, that’s, that’s amazing. So you’re paving the way for more and more people, young people to be able to be open and feel comfortable. And they look up to you the same way, you know, you all have had mentors, and and you’ve all and you both, obviously, look up to each other. So it’s really, it’s wonderful.

SC:  

No, definitely kind of it’s, it is a scary moment when you go from being the person who’s mentored to being the person who’s mentoring when x generation. You do kind of when you start this work young part of your identity is, oh, that’s the kid who does the neurodiversity work, right? When people would talk about me, it was in the context of this is a youth who’s doing this activism. And then when you start reaching a certain age, it’s like, Oh, okay. I mean, I’m only 19. I’m not making it out, like, but… I’m still I’m kind of getting there, where it’s where, you know, 13 year olds, 14 year old start contacting you and saying, Oh, can you help me do my advocacy and that’s like, I remember when I was in your position.

LB:  

That’s a pretty quick turnaround. That’s pretty amazing. But you’re, you’re obviously very mature for all of you. We had so many life experiences and writing. You know, nobody author’s book, it’s so rare to author a book as a teenager. So you know, you guys are, both of you are just, just amazing. I’ll stop saying that because I keep gushing over you too.

SC:  

Well, thank you. 

HM:  

I’m really excited and I’m also gushy as well. So I should probably cut myself off before it gets a little too much. And I think that’s the end I gave us so much to think about and to reflect on and walk away with and I’m just so excited to see what you do next. You’re going to be absolutely wonderful when you start University and whatever you end up pursuing, whether it’s mechanical engineering, business ownership, or something else completely different or weaving that in with neuro diversity, celebration, weekend qL mentoring and everything that you do, I’m just really proud and it just makes me really excited. I know it sounds ridiculous, like broken record. But please make sure to follow Siena you could check out her book, the “Spectrum Girl Survival Guide: how to grow up awesome and autistic”, and you can follow her at QLmentoring. For the rest of us. Be sure to check us out at differentbrains.org and check out their Twitter and Instagram @diffbrains and don’t forget to look for them on Facebook. If you’re looking for me I can be found on all major social media you can find me @Haleymossart on Twitter. You can find me @Haley.Moss on Instagram or you can also say hello to me on Facebook or at Haleymoss.net.

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.