Hello! Welcome to Unpacking Neuroqueerness. Welcome to another episode. This is your host, George Muniz Gund.
Today we have our very first guest on the show. Someone who has grown her up around me their entire life.
And from that, sees autism from a very unique perspective compared to other neurotypicals.
I'm talking of course about my dear sister, Luana Muniz Gund. Hi Luana!
Hello! What an honor to be here!
Thanks for joining us. Thanks for being the very first guest.
Of course! I'm excited.
Well, I'm really excited. I have a lot of questions to ask you.
I wanted to start with how would you describe, just a general description, how would you describe growing up as a neurotypical with a neurodistinct brother?
I think our case is particularly interesting because of course, as you mentioned in the podcast before, you were misdiagnosed for 16 years.
Growing up, we didn't have a vocabulary to talk about the differences that we were facing every day.
When I remember realizing that you were different, because when I was really little, I wasn't aware of...
I didn't interpret the things that made you different as like, oh, he's different than people around me. You were just my big brother and that's just who you were.
It was until a little later when we had moved from our first home to our second home in Sao Paulo when I was around 8 years old. I was starting to get a little bit older.
I was a really annoying little sister. I used to provoke you a lot.
I remember that.
It was fun times. Normal brother sister stuff, sibling stuff, but I also just realized that sometimes my being annoying little sister provoked really intense reactions.
At first, I thought that was just normal and I honestly messed up as it sounds. I wanted to provoke a reaction, so I didn't really think about it until I don't remember what argument we had.
I don't know if it was me stealing your candy and not wanting to share candy and baiting your privacy because your privacy was really important to you.
If I would just bust in your room when your door is closed, that provoked a really intense reaction for you.
It was when you had a meltdown in the bathroom and you locked yourself in the bathroom because I think you were just so overstimulated and overwhelmed and upset.
I was like, damn, this is a really intense reaction for what I did. I was on the other side of the bathroom door thinking maybe he is...
I don't know how you feel about this word. I don't know how I feel about this word, but just for a lack of a better word.
He is special. He is different. Maybe I should tailor my behavior towards that.
I like the word different better. I feel like I used to use the word special a lot because I would hear it a lot.
It ended up resonating me and it does have a nice warm feeling to it. I think I always liked that about it.
But then I realized that it's also not great because it kind of generalizes.
The whole thing... I don't like special needs and now I come to realize I don't like special needs because it makes it sound like... because everyone else has human needs and then the disabled have special needs.
It's not only separating them, but it's also assuming that all of their needs are the same. Now I realize that.
Now it's like, oh, that makes sense. Now I don't use it as much anymore.
I guess I always knew that it felt a little weird, but I couldn't really tell why.
But I did like the warmth of it and I acknowledge this. I think in another episode I talked about this too. I know that it's coming from a good place because it was meant to replace words that were a lot more ageless.
At the time, of course, it's what was used and until now it's still widely used by a lot of people, including people that are part of the autistic community.
That's just because that's the only language they've heard their whole lives. That's what they use.
So anyways, when it comes to language, it's all a long process of unlearning and then relearning and understanding and everything.
And having access to that education.
And having access to it as well, of course.
Which is awesome.
Yeah.
Expand that access.
One more thing about your question that I wanted to mention, I think that makes me and all of the people that love and surround you really upset.
But I think it's important to talk about, which I also began to solidify the idea that you did have, well, I guess we didn't know it was autistic back then, but you know that you were different.
Yeah, I knew that.
And then we went to the same middle school, but we lose like different buildings because you were older.
Yeah.
And I had realized that that was a very bougie, crepey, white ignorant school, but I didn't know because I was so little and like I was always so extroverted that I, you know, I had an easy time navigating that school.
And I remember, you know, we were going to switch schools. And when I found out why, you know, when I don't know if you mind me sharing the story, I think maybe that's something that you can talk about in another episode if you want about this
like, like, bullying incident that happened just like absurd, you know, like really, really inhuman.
People are picking on my older brother for what, you know, and then I kind of put it in the context of like a world because within our family, I realized it, but then I was just like, oh, okay, so this is like, you know,
it's like our side of our family do exactly. It's like a phenomenon.
Yeah.
So that was when I started getting really, really pissed. And like more, more dedicated to me, at least your life easier at home, because you didn't need an annoying little sister to come home to.
Wow.
You know, I really appreciate that. I mean, I think we had never really talked much about this, but like, like, that's really, that's really, really great for me. I mean, I really like being able to hear that because I don't think that, you know, I never saw that like that whole
situation with the bullying. Like, I remember that very well. From my perspective, but like, it's very interesting to hear your perspective to and that's very, that's very revealing.
I mean, it all makes sense to me now, of course, but how, how, like, how core is that, that it was that experience, like it was you seeing that experience, me going through that experience, like through bullying, but like outside of our family, like that's what made you realize that
that I was different, like, and it was affecting me in society. Like, that's what made you like, that's what was kind of an opening for you. So like, you could just, yeah, like it not just for me. Yeah.
I think that something, you know, as much as we'd like to, especially in this age, admit that we're perfect, we've never made mistakes in the past, you know, I was also very much learning and I was just in my role of a little sister and I think that I felt comfortable,
provoking and like having.
And yeah, it's also what sister do. Yeah, exactly. Sure. It's like normal sister stuff, but like, you know, I was more comfortable doing that inside the home, because you know, you were my family and I loved you no matter what, and you know, we would always make up at the end of the day.
But when I, when I realized, and I was just doing it because you know, I was your sister, not because you were different or anything like that. Yeah. So when I saw that, I think, because initially I think I was like, pretty upset, you know, like because I didn't
like I didn't understand you were different to me or just my older brother and I was really upset about switching schools because I used to have a good time at that school. And then it wasn't until I found out that I just started I remember like clenching my fists and how angry I was at those
girls, you know, those bullies. Yeah. And that's when I realized I was like, Oh, so like, it's like, I almost just I was like, Okay, so nobody outside like nobody can.
I don't know, like I feel like I wasn't always the most understanding, you know, and I feel like that experience just made me
more understanding like from because you can see from the outside to yeah because I first it was just like I was, I was being kind of mean inside the home you know and I didn't see a problem with that. And then it was only when I saw it like in perspective I think.
And no, but like, you know, that wasn't really happening to other kids and I just put two and two together and it just made me so upset and I started kind of realizing you know another thing of growing up with a neurodivergent brother is you know it's very much a long
conventional sibling relationship than what you see in like TV, you know, like all the older, the older brother and the younger sister and stuff like I feel like in a way it was really nice because
like you can't like when my friends came over you would play therapist with us like you weren't afraid.
Yeah, I remember that break those social barriers or whatever. So that was really awesome.
I mean, it hasn't it has its hardships and its blessings but as we've grown and whatnot. It's been a privilege to honestly have a neurodivergent person in my immediate family, because I think people can learn so much like so much from just being patient and like, you know, listening to
this, because you know, like I, in the way I see it, you know, like, there's so many qualities that are just it's have that neuro typical slash you know, particularly also like just honesty, you know, like just no bullshit, no filter just to say how you think say how it is.
And so, yeah, that's in short to answer your question the very long way.
No, that's fantastic. I really love that answer.
It's learning and learning, you know, just like from inside the family and outside the family is really important to challenge your beliefs to communicate with the neurodivergent people, you know, like here from them.
Yeah. And yeah, constantly learn and learn.
Exactly.
Wow, yes, it's just, wow, like, I mean, you've come clearly you've come such a long way from like, when you were younger, in terms of like, you know, I mean, we all have because I didn't even know at that point either but like I think our relationship as siblings has come a long way.
Since then, and there's so much more understanding now, like that I have this diagnosis and this leads up to my following question.
But that, you know, I've been so I've been doing like so much more research within the neurodiversity paradigm now and then I'm able to to pass it on to you.
And, and, you know, other family members too and so we're all more understanding now. And it's just so great.
And it's just been, yeah, such a beautiful thing and it makes me so happy and proud of you because I don't know I think that this is a different journey for many artists.
Obviously, but you know, being not being able to have that vocabulary to describe your experience until you're like, well, into your teenage years can set you back and understanding yourself identity.
And I think it's so awesome that you were able to find your place within this discourse and they're now building your platform because that's what we need more of.
I don't know if this is going to be one of your questions but I wanted to mention this because obviously, you know, I was just a bystander to what was to your journey in, you know, learning that you're artistic.
And first of all, what that means, how you're supposed to make sense of that and how you're navigating the world that's not built for you.
And so I don't remember, you know, I don't remember when I found out that you're about your diagnosis or anything but I remember that it became more clear after we moved to the United States.
And this is true of a lot of, you know, vocabulary.
I didn't like learn much about anxiety, depression, you know, yeah, these, I don't even know how to categorize them but like these things until I moved here and like, what really, like, really,
like really ticked me into like really just being an active participant in learning about, because I was, I like, I wasn't learning so much as I was like unlearning in my early, in our early childhood I was more trying to like not provoke and like not instigate reactions that I knew were like not fun for you or me or the family mom and dad.
But when I got to high school and people in our Bay Area private high school started, it was a very small group of people but they used the word autistic a lot in like a very negative connotation.
Yeah, sadly a lot of people.
It's like really, really, really so like, like follow things but like the intent wasn't there it's just so dumb. I know they're like, oh stop being autistic and like, or and I'm just like you guys can't fucking fill that word.
You know what I mean, like, just can't like, you sound so ignorant.
And, you know, they used to make problematic statements and that was also around the time that, you know, there was this autism and vaccine debate.
People don't know anything and people need to be educated, you know, people need to be sat down because the thing is, is like, they're not interacting with autistic people on a day to day basis.
So it feels fine for them to say because there's nobody policing that. And so I was like, listen, like, you guys all know my brother's autistic and you guys all love my brother so it's just like, let's, let's sit down and have a conversation that needs to happen because like, this is, this can really negatively affect people.
This just creates a discourse around a lived experience that is just so problematic.
So that's what motivated me to create unpacking autism, which is a website that I created in high school with the goal of educating my peers on what it, nobody can understand what it's like to be autistic, but I put videos of like what sensory overload may feel like, just like trying to put people in your divergence,
like, people's shoes for a second, or just trying to like, put the idea out there that like, hey, like, if you don't know it, like, don't just don't throw these words around.
Don't be mean to people that are different, you know, because everyone's experiencing life in everyone's having, everyone has issues, you know, everyone has stuff that they're going through.
Like, why make that harder? Wouldn't you want to make things easier for other people when you want other people to make things easier for you? So like, you know, that's what propelled me more to like, just actually trying to be more, like, well-versed.
Yeah. Wow, you know, I really appreciate you telling me that and sharing that because I hadn't even realized, I mean, certainly not at the time. I don't think I realized how much you were, how much like you started advocating for me.
I remember when you made the website, like, how I was really happy about that and of course, you know, but I just, I don't think I saw like, what was going on behind the scenes too.
I don't, I like, I never saw like when you would, like these moments that you were calling out your friends and stuff and like, that makes me really happy to hear because like, that's what, that's what we need.
We need other neurotypicals, particularly like family members and friends spreading the word. Like, it's not, like, it's not enough, it's not going to do enough if they only, if they only like, talk to me or read my stuff or whatever.
But like, what they really need to be doing in addition to that, like you've been doing, is spreading the word and telling other people too and being like, hey, because, because if they don't spread the word, it's like, great, they know a lot more about autism now, but who, but like their friends still don't.
And if they spread the word, more and more people will know.
That's exactly it. And I think that's pretty simple, you know, I think that it's hard and it's not always perfect, you know, because I think the people within the family, context or friends or whatever have to unlearn what society has taught them.
And then you have to, and this is with anything, you know, with racism, with homophobia, xenophobia, you have to engage in these conversations and people are just like, you know, throwing words around or making statements, it's better to just to instigate these conversations,
even if it doesn't turn out the way that you like, like, just to plant the seed in people's brains, like, I feel like that's really what makes the difference. And it's like, it's the bare minimum I could do, you know, because I like, you know, within a family
context, maybe it's easier just because you have so much love and stuff for the other, for the other person. But yeah, I think it's, it's, it's difficult. It's not an easy process by any means. And I think that it's, it's not a smooth one, either, you know, it's not linear.
But yeah, I think advocating, it's not even just advocating, it's just like listening, really, to the autistic community. It's a while because I'm a psychology major.
So I think interesting setting, an academic setting where I'm learning about these things, and it's made me so disappointed, it's really disappointing to see the discourse around autism in academia, because it's really brushed over.
And it's usually in the psychopathology section. Exactly. And, or, or like, you're like, and I'm just like, this is, you guys are even like, you're not even taught, you're just like, Oh, when is the earliest I can be diagnosed, like you're not even talking about like, things that can be relevant to people that like, in our age with our like, teach about stimming, teach about
melchons, you know, teach about these things that people from the outside can observe and then be like, Okay, I know what they're doing. Because I used to be really annoyed by your sins. You know, I used to ask you to not do that.
I remember.
And, you know, was it after I learned that that I was like, Damn, like, I sounded like an asshole, like if that's just something that's like self gratifying in the moment to like, kind of take away from, you know, sensory overload, whatever it is that's going on.
I have nothing to do with that, you know, it's like, what like, but it makes it easier to understand it. So I feel like a lot of people might have been in my position and I just wish that that's the curriculum that people taught in schools.
And I think maybe we're seeing a shift. I'm going to, I have a class next semester about the history of disability. And there's a full course now dedicated to autism spectrum disorder. So I think we're making like, small steps.
But, you know, it's definitely a challenge. It's definitely a lot of work still needs to be done. But, you know, podcasts like yours and like, come orbit conundrums by Sam are really important for people to have access to I think.
I'm sure because it shows them a different perspective and so many times, you know, I talked to people about like these things about like this, this different perspective of autism and they're just mind blown, because it's so different than what they've been ingrained to think their whole lives.
And you just touched on like something about autism research. It is like that's another thing that, you know, has been a big problem is that a lot of autism researchers they don't listen to autistic people and they don't, they don't do see they do autism research from a neurotypical perspective.
The main point is the autism, the people that are conducting the autistic research on autism are autistic.
No, they're not. Yeah.
And the thing is, is like, and I think that forgive me here and this is a learning moment. I would like to know the correct term to use for the spectrum that is autism. I think what we're talking more about here would be what was considered as burgers or what was in the outdated terms considered higher functioning.
So yeah, we can talk about that. I'm thank you for asking. So, yeah, Asperger's is what would now be called support level one autism.
And then, and so like support, the support needs are is also replacing, replacing the functioning labels, which were called high functioning, low functioning. So people used to refer to Asperger's and sadly, a lot of people still do refer to the former Asperger diagnosis as high functioning autism, but now, like now I know to
use functioning labels, because high functioning invalidates because what we have function basically invalidates the struggles of people that mask so much that they can pass as neurotypical but they're actually like so exhausted from asking.
And low functioning, of course, I mean, by itself, it already sounds pretty ableist, but it also invalidates, of course, the capabilities of those who may be considered low functioning, maybe because they don't speak, but it ignores that the fact that they can write, you know, it ignores the fact that, you know, they can do other things.
They're not necessarily low functioning just because they can't fit neuro normative molds. And so it's their support needs is the new language, I guess there's not, I guess, I know.
But, so Asperger's would be support group one. Asperger's is considered now support level one autism.
Yeah. That's what I'm most familiar with really. Yeah. Yeah, it does vary. And I always try to be very mindful now, you know, when I'm writing, or when I'm podcasting, I try to not speak for nonverbal, high support needs,
I try to always acknowledge, you know, that their experience of autism might be different than mine.
You know, still touching on the things that even non speaking advocates themselves would, would, you know, they advocate for, but they do have a different perspective like then than mine.
And, um, well, I think that's with anything, you know, it's important not to generalize, but it's important to represent. Yeah.
So that there's a fine line between those. Yeah, it's important to also show that that they can, they have platforms as well.
Yes, 1000%. I think I remember this is something that you talked to me about, but I remember there was someone with high an autistic with higher support needs and they were nonverbal and they were on a wheelchair and they, you know, had primary caregivers and caretakers.
Yeah. But it was only until like an interview with him that he was like, he, he, I don't know how, how, how the technology worked.
Yeah, I think he was, I don't know if he typed or how it worked, but it was like so, and he's just like, you know, I can, like, I can, I can formulate sentences ideas like I am a full person, you know,
Yeah. In this body, like, and I'm just sick of people speaking for me, you know, like, exactly. And it's just so saddening that there's so many autistics around the world with this experience and throughout history, you know, it's just such, it's so,
it's so important that we have a change. And I think we're seeing that. I think we're seeing that in media, even though we're not there yet. I mean, it really it's like, most, most, most issues we're facing today.
It's, it's, we still have a long way to fight. But I think what's just in front and poured to highlight to was like, even after like immediately after your diagnosis, you weren't like you weren't catapulted into the world of neurodiversity.
Yeah, exactly. It wasn't until recently, it was 30 years of life that you found your voice within this community. You found your community, found vocabulary, described your experience.
And that's like, it's crazy that as an autistic person, it took you almost 30 years to find that. But I mean, also puts in perspective that especially that like, you know, there is no time, there's no, it's just, it's a journey for very, for different people.
It takes different amount of times. It happens at different stages of life. But yeah, it makes me excited.
I think that you have that, that you have the autistic people have more platforms and are more.
Yeah, like that's, that's what I really wish I had been able to come across like even sooner like, because you know I got my diagnosis, like 12 years ago but like you were saying I just just recently came into this whole neurodiversity paradigm and that is greatly
because of the predominance of the pathology paradigm.
And, you know, how that makes even autistic people think of their autism as a bad thing, which is like probably, I think for the very beginning, like the first couple years, it's what I did.
I didn't think of it as a terrible thing. Like it wasn't like that, but I only focused on the negatives.
And it wasn't until later that I started discovering like all the positives and like, oh my God, hyper focus and, you know, directness and all these things that are like really good about autism and that's, you know, I can do better than neurotypicals.
And that started really opening my mind.
And so there's something, I mean, we, it's actually very related to what we were just talking about you studying psychology.
Did having a neurodivergent brother influence your decision to help, I mean, to study psychology?
I think, yes, definitely, maybe more indirectly than directly. I was, of course, like I said, you know, it's more of a bystander to your experiences. And you know, how I was deciding my career path.
I think it was a 14-1 second.
So as I was saying, I think what catapulted me into the world of psychology was more my own experiences in therapy and whatnot, but I think I was always interested in, and, you know,
psychology based off our experiences at home for sure. But it wasn't like a direct connection like, oh, because it definitely influenced me, this and short, for sure.
Yeah, yeah, I figured that there was probably some, some influence, but I was curious because I think I never asked you that before.
Yeah, it was hard not to go through those experiences and not want to like work on, like, you know, educating people, I guess, especially about like psychological things.
Yeah.
And you'd say the, it's still pretty pathologized, right, like at the, because I would, I mean, like, inside the university system.
A thousand percent. That's what I was going to say.
Within my clock, hold on, I'm just going to make a little list noise here.
Yes, academia is still has a very much pathologized discourse around autism. Unfortunately, and it's, yeah, especially in the psychological field, which is one of the most important fields that is taught, you know, to learn about autism, it is really disappointing to see
like the content that they teach us. And I, you know, I've been in developmental class and introduction to psychology and normal psych, not a normal, which is now called psychopathology.
And they all have like one Google slide dedicated to autism. And it's literally nothing relevant. It's information that you that like the students won't do anything.
They won't learn. They'll just memorize for the test, but they're not actually actively learning. Yeah, it's not going to help their interactions with neurodivergence, you know.
Yeah, that's, that's too bad. That's really, that's, that needs to change for sure.
100%. And hopefully, you know, with people I've met, though, what's made me more hopeful is I've met people in my field in psychology, students who are, you know, the next generation of thinkers and they're very much more
more progressive and aware than, you know, the teachers. So those are the future generations of me myself included, you know, yeah, those are the future generations of psychologists and teachers and educators.
So that makes me hopeful.
Yeah. Yeah, that's that's good. That that makes me hopeful too. And I'm sure a lot of other neurodistinct people also that are listening to this.
Yeah, well, I had, I think what I was going to ask you next, you might have kind of already answered, which is great.
It was about how you felt when I finally got that diagnosis at 16. But I think you touched on that a little bit.
Yeah, I just brought over it again. But basically, like I said, you know, I was, you know, had my own life in my head. So it wasn't like, really, I was more of a bystander to that diagnosis when it happened.
I don't remember today. I don't remember, like, I really don't remember. I just remember that was like a new word, you know, to describe to describe G, especially like during that time was Aspergers, you know, your brother has Aspergers.
And I was like, okay, cool.
Yeah, I mean, that's kind of how I was like in the very beginning to I was like, I didn't really know much about it.
Yeah, right. Because it's like what I was saying, you know, like, even when you were diagnosed, you weren't like, had a cold to the neurodivergent community, you know, it took a while to other experiences and other journeys, you know, and I think what would be really cool, just like my last thought that I had was when we were talking about,
you know, academia and like the research community being dominated by researchers that may have some ties to neurodivergent people but are neurodivergent.
And, you know, a pretty cycle, like cycle pathologize a lot of information. It would be really cool to see society and legislation implement ways in which they can make it easier for us to see people to be uplifted and
encouraged to enter those fields as well. You know, because I remember, you know, you had tremendous difficulty, not difficulty in school with the content, you were actually
Yeah, it was the system.
than, you know, a lot of people, but like, they didn't accommodate you.
No, and that's the problem. Yeah.
And essentially, I mean, correct me if I'm wrong, that's what made you drop out, you know, like I think that that is so, that is doing such a disservice.
To our citizens and I think that I, in the future, I hope to see more inclusivity and to see more artistic researchers and to see people being uplifted into careers that maybe society has deemed not
appropriate or
Yeah, yeah, exactly.
Yeah, it's, it's frustrating because that's a huge problem with the educate. One of the problems with the education system now is that, but at least when it relates to neurodivergence or neuro distinct students, they are not accommodating
enough and they sadly a lot of professionals and principals and you know, directors and such universities, they don't even expect the autistic or the neuro distinct people to succeed so they don't even, you know, put truck accommodations, they don't even try and
there are so many neuro distinct individuals that would thrive, you know, that would be a thousand percent. Yeah.
And no doubt in my mind about that. Yeah, it's just, you know, it's one of those things we need to change the narrative about. And another thing, it's just, I mean, it speaks to a larger question also about how, you know, even high support needs
autistic like we were talking about, you know, they can communicate to they have their platforms to like a lot of people.
You know, this happens because I'm an actor as well as you know, and I see like in the film industry, there's still also a very stigmatized view of autism. And so people that want to make films about autism.
They think, you know, particularly if they want a high support needs character, they don't realize that there are high support needs working autistic actors out there.
Right. And they always assume they have to cast the neuro typical I heard something recently. I mean, this has actually happened many times, of course, in the film industry, but you know,
I was actually recently put in touch with someone through a friend from my acting school that is planning. He is a director and he's planning to do a film with an autistic character.
And of course, I'm really glad that she reached out to me to make that connection and that I could connect with him. And what's more important to me even like it's not even just getting the role like if I don't get this role.
But if I end up just teaching him a little more about autism. So he has a better ID, you know, he has more understanding of it and and hopefully a better portrayal as well.
And that would be more important to me than than if I get the role or not.
And that's what makes you one of the greatest.
Thank you. I know, but I completely agree with you. That's right. Right on the nail.
Thanks. Yeah.
Well, I have those are all the questions I wanted to ask. I know we're at 43 minutes. So I will let you go but thank you for coming on. This was fantastic.
And yeah, you know, thanks again.
It was really my pleasure. This was such a fun time and there's still so much to be discussed but I'm glad that we covered really important bases.
Thank you for having me. And thank you for creating this awesome platform for neurodivergence and neuro typical is alike. And yeah, thanks.
Thank you listeners for listening.
Yes. Thank you, everybody. Stay tuned for the next episode. Hope you enjoyed it.
All right.