Steak, Scarlet Moth and FluffyJacqui: Valuing and Appreciating those on the Spectrum

25 April 2019

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Reading Time: 11 minutes

As April is Autism Awareness and Acceptance month, we had three amazing individuals volunteer to share their story with you. Scarlet Moth, Empress Steak and Fluffy Jacqui gave us an opportunity to explore the lives and celebrate neurodiversity. Each of them shares similarities in their diagnosis but also shows their differences explaining how autism is a spectrum and not something easy to describe. They opened their hearts and minds for us to take a brief walk in their shoes. We hope that you, too, will appreciate the value in the wise words as they share with us through their stories.

 

What do you want people to know about you? Tell us about yourself.
Scarlet Moth: I am an artist, a cosplayer. I love video games, fantasy and role-playing. I’ve loved fantasy and made-up worlds since I was little. I think I’ve been drawing and doing creative things since I can remember.
Fluffy Jacqui: I am the exact same! I am an artist myself. I am currently taking an art class at school and I also love writing in the fantasy genre. I also love video games and card games like Yu-Gi-Oh!, and I loved it ever since I can remember.
Empress Steak: I am a freelance software engineer. I also love games way too much for my own good. I stream a bit on Twitch and I am transitioning male-to-female.
Do the people around you know that you have autism?
Fluffy: Most of them.
Steak: Yes, most of them.
Scarlet: My family knows and some of my friends but it’s been quite a recent discovery so not everybody at work or just around me is always aware that I am.
What do people say when you do tell them that you have autism or what do you wish they would say to you?
Fluffy: Not many people really say much when I just tell them. They just say, “Ok, I never knew that about you.” They don’t really say much.
Steak: That is pretty much the same experience I had. I had a couple of people respond, “Oh, that answers a couple of questions,” or, “That makes a couple of things make sense.”
Scarlet: Yes, I think that has been my experience for the most part. People saying “Oh, I never knew that about you,” or, “That explains a couple of things” because I was only diagnosed as being on the spectrum this time last year, in April. So, I’m all like, “Neither did I,” and I also think that explains a few things. I have had one or two people who it doesn’t surprise me that this was their answer. They just said, “You don’t look autistic!” Well, it is a wide spectrum! [sic]
Steak: I was diagnosed when I was eleven, so I basically grew up with the knowledge of what I had and I guess I tried to hide it as best as I could— not always successfully.
Is this something that you feel that you need to hide from society?
Steak: I always felt bad, I wanted to be normal, and this was a label on me. Before that I was called a bad kid because I would have these times where I just couldn’t control myself, my emotions, or my reactions.
Scarlet: I was always very emotional as a kid and very sensitive emotionally.  [Steak and Fluffy agree they were sensitive too.] I never really had a friend group that really stuck. Or I was always kind of quiet in some settings but outgoing in others. Looking back on it, and especially how a lot of psychiatrists and psychologists define female autism, or females on the spectrum, how it manifests in young girls is quite different to how it manifests in young boys. That is why it tends to slip under the radar a lot more in girls than in boys. But, if you look at the descriptions that psychiatrists give, they often say that an autistic girl might be really good at things like languages, art, or able to pick something really quickly and they’d be more often shy and reserved, or they will go under the radar because they tend to imitate the behaviour of their peers around them. So, it’s not that they are displaying the same behaviour as their peers, but they are imitating what their peers are doing, almost as a kind of role-play, and that is what makes a lot of young girls, especially primary and high school level girls, fly under the radar. I think that was the case for me as well, since I was not diagnosed until I was 22.
Fluffy: I was diagnosed just before my seventh birthday, I was very young. My experiences were quite like Scarlet: I am normally quiet in social situations, except around like one or two people. In a group I am quiet, but around one or two people, I can be really, really outgoing.

Scarlet Moth

Scarlet: I find it depends on the setting for me. Online I am extremely outgoing, or when I am cosplaying, I am very out there, wanting to talk constantly, and just put myself out there, but in other settings like in regular day settings, I can be a lot more reserved.

Steak: Maybe I should try cosplay then.

Scarlet: It’s something that helped me even before I knew that I was on the spectrum. When I was diagnosed, everything was just like a puzzle piece clicking into place, suddenly all made sense. “This is why I act this way, and this is why I might react that way,” and it was something that I wish I had known earlier. I also wonder how that would affect me if I had known that growing up because, probably is less so now, but there was and still is a stigma surrounding being on the spectrum and having autism and I wonder how that would affect me growing up. But being able to have it now as an adult, being able to explain it and having the words to explain how do I feel on the spectrum, I think that might be a bit easier. [sic]

What do you think other people take for granted, sometimes?
Steak: Being able to naturally fit in, without trying to work at it, but that is completely wrong, isn’t it? Neurotypical people don’t always fit in, do they?
Scarlet: That is what I was thinking about, neurotypical people.
Steak: Don’t know, that is such an alien concept to me.
Scarlet: When you are on the spectrum, or even have another mental health disability or disorder that you are working with, I guess that maybe some neurotypical people take for granted that they can control their emotions more? Or that they have can have control over some of the things that they do or feel or say. I mean, that is always to a degree, but there is a part of me that especially if I am experiencing sensory overload or I am in a more depressive state, I can’t necessarily control all my reactions or how they are coming across. So, I think that just being able to take for granted those emotions and those reactions.
Steak: Let’s pretend that I said that too [Laughs].
Fluffy: I was going to say that I feel that I am taken for granted, because I can be also very outgoing, friendly and trust people easily, but then there are some people who just totally can advantage of me, and it can really get to me a lot.
Tell us something that you have done that you are proud of?

 

Scarlet: Oh, this is where the impostor syndrome kicks in.
Fluffy: I remember some things in the past. I used to do a lot of performing on a stage, I used to play the flute in a band, and a choir, and those accomplishments make me happy to this day. Getting Affiliated on Twitch, that was also a big achievement for me in October last year.
Steak: The thing that I am most proud of is accepting myself for who I am as transgender and having come out subsequently after. It was 28 years of not knowing and then so much made sense.
Scarlet: I think that for me, I can give two things: One, getting better, especially after last year, just around the time that I was diagnosed. I was going through a bad breakup and I was in a bad way, really depressed and anxious. I ended up in the hospital for a while but, then, getting better and showing the world that I was able to be better, that I could do it for others, but mainly for myself, and just being happy within myself and finding that kind of even ground to stand on. And then, more outwardly, getting a commission to make a prop for one of the D&D players for the C team which is a Dungeons and Dragons show on [the] Penny Arcade channel, as being the people who run PAX and the webcomic Penny Arcade— That was also a huge thing for me and I think was also a sign of how far I’d come in being able to put myself out there, and be comfortable in who I am, and confident enough to be able to get those opportunities.
Fluffy: That sounds amazing.
 
What is something that you wish people knew more about being on the autism spectrum?
Fluffy: Oh, where to start? There are lots of things. Well, I heard that people on the spectrum can have obsessions, like a lot, and I can get really obsessed with a specific thing every few months, and people just think that I am too obsessed, to the point that they think that I am crazy and I am not crazy, I am just on the spectrum.
Scarlet: I totally get that as well.
Fluffy: Like, I am totally obsessed with Yu-Gi-Oh! right now. My entire Blue Eyes White Dragon deck is on the floor for some reason and people think that I am totally crazy because I have a character tin in my room that I bought for $45. I made my grandmother buy it and people think I am crazy for it.

Empress Steak

Scarlet: I tend to latch onto things and I’ll be not necessarily obsessed but hyper-focused on one thing for a while and then sometimes that will drop off and I would be— “Oh, ok, I will be able to find something else now?” especially with cosplays. “I am working on this—” and I will work on this one instead, and forget that other one. D&D and role-playing my own stories with a group of people has helped maintain a steadier focus, so I can be absolutely obsessed but it’s also healthy for me to keep really invested in. Stuff I wish people know about autism? I really want people to know that when we say autism spectrum, we mean is a spectrum. It’s not a line, it’s like a colour chart, one of those big colour wheels. You are not “high-functioning” or “low-functioning”. I hate the term “high-functioning” when people use that for autism because it just feels disingenuous and not representative of what it is. There is obviously different ways that autism can manifest and there are more severe ways—such as nonverbal, or when starts affecting your motor skills, or how you are learning—but I think that people just have this one idea of what autism is, when we need to be showing people that is a whole host of things, if that makes sense.
Steak: There are many kinds of us out there.
Fluffy: Yes, I think that my brother is a nonverbal autistic as well. I forgot how old my brother is, but he is nonverbal as well.
Scarlet: It’s interesting, when I used to work in after school [day care] there were a few autistic kids. There were some who were the way that society sees autistic kids: the kind of shy, kind of learning disability type of autistic. While there were others who just were, I guess, a little bit like me, except that they did not fly under the radar. They were a bit more outgoing; they were passionate about certain things, except that they couldn’t communicate as well with what they were feeling or had troubles with sensory overload, and there is just a whole host of different things and they manifest in different ways. It’s just a vast spectrum, which can make it a bit difficult.
Steak: The thing that I would like people to know is that I don’t need a cure, I need to be accepted for who I am.
Scarlet: Absolutely.
MrsLlante: I love that, autism is not a disease.
Fluffy: Yes, me too.
Scarlet: I’ve been thinking about that a lot recently, especially with the Autism Month. There are a lot of charities or groups who say that they represent autistic people, or people with autism, but aren’t autistic and the way that they talk about it sometimes. “Oh, is this burden on people is a disorder, is a disease,” but no, it’s just that my brain is wired differently. I’ve got these wires connecting things instead of my other normal ones. Does not make it any different, still works, just works a bit differently to yours. And even more severe types of autism, there is still a beautiful human being under there. It’s still your son, or your daughter, or your friend and it just feels insulting to have people think that is a disease and not realising that you would not be you if you didn’t have this. Sorry, I can tend to ramble.
Fluffy: Don’t worry, me too.
Scarlet: I am passionate about this now, but also because I’ve seen so many anti-vaxxers talking about how they rather their kids to not have…
Steak: Autism causes vaccines, not the other way around.
Scarlet: It’s true. I think that people forget that so many creators, doctors, and people who’d come up with these amazing things have been on the spectrum or been not neurodivergent and— Where would we be as a society, if not for people with autism or people who are not neurodivergent?
 
Is there anything that you would like to say to anti-vaxxers?
Steak: Vaccinate your damn kids!
Fluffy: Exactly! Vaccinate your kids!
Scarlet: Vaccinate your kids and vaccinate your dogs, because people are not vaccinating their dogs because they are scared of doggie autism.
Steak and Fluffy: What? Is that legit?
Scarlet: Yes, that is legit, it was on the news the other day. Anti-vaxxers, please listen to a qualified GP and not to “Doctor Google”, just listen to people who are qualified and please make decisions that make everybody else safe. There are people who can’t be vaccinated, who are relying on their immunity to be able to protect them, so please don’t do that. Please don’t be responsible for the death of someone else. Thanks.
Fluffy: Don’t listen to Trump either, don’t use the natural stuffs, we have vaccines for a reason.
Scarlet: Also, stop insinuating that autism is worse than death.
Fluffy: Autism is great, kids.
 
What is something that you would like to say to yourself as a child?
Steak: “Get onto hormones like a lot earlier”. [Laughs]
Scarlet: Probably that, “There is nothing wrong with you.”
Fluffy: I remember when I was diagnosed just not what it happens because I didn’t know what the hell autism even was. But probably I would tell my younger myself: “As you get older, you will meet other people who have autism and people will understand”. [sic]
Steak: “It is a rough hand to be dealt but it does get better. You’ll learn over time how to cope with it.”
Fluffy: Amen.
Scarlet: I think that is something I would tell my younger myself with or without autism: “It does get better.”
 
Is there anything that you would like to add as a final note?
Fluffy: Vaccinate your kids!
Scarlet: You’ll find where you fit. It’s not necessarily about fitting in somewhere but you will find something that fits for you. I, three years ago, found Dungeons and Dragons and role-playing, and that has been one of the best things to happen to me because, in a way, it’s been able to let me to role-play through different situations and emotionally learn from that. Which, as someone on the spectrum, I did not realise that I was doing that almost every day of my life beforehand. I was very good at it, so you will find somewhere you fit in.
Steak: I found that role-playing in D&D to be pretty much second nature.
Scarlet: Absolutely the same here.
Fluffy: I need to play more D&D to be fair.
Scarlet: Everybody needs to play more D&D, yes, that is what I would say. Everybody needs to play D&D because then you will get a bit more understanding for someone else, even if that is through pretend situations.
Fluffy: I used to be in a D&D group of people with autism but then I stopped going to it.
Steak: Oh, no!

Fluffy Jacqui

Scarlet: The destructible mind. So yeah, I would say, “You will find somewhere you’ll fit in or something that fits you. You don’t need to fit in somewhere in the world, you just need to find something that will fit into you or works for you. Screw being normal, being neurodivergent is where it’s at!”
Fluffy: What is the fun in being normal? [Laughs].
 
A special mention and thanks to the following people for making this possible:
Thank you to Scarlet Moth, FluffyJacqui and Empress Steak for being so open and honest! We really value and appreciate your honesty. Thank you to KaDi for transcribing! Also thanks to @PieByPie and Peanut for being the incredible editors.
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