Conversation with JayJay Mudridge

In this twelfth episode Ginny Grant begins by introducing the show and providing context about herself and Reframing Autism. Ginny then introduces JayJay Mudridge, who is a young American Autistic advocate.  
 
 In the conversation, JayJay reflects on their Autism journey after being identified as Autistic at a young age. They talk about how finding the Autistic community and seeing Autistic individuals existing as their authentic selves was a vital step in their own self-acceptance. JayJay discusses some of the Autistic advocates they have become friends with and how those relationships work. Next, They explain that their advocacy was traumagenic – that is, it comes from a place of trauma – following their experiences of Applied Behaviour Analysis or ABA during their formative years. JayJay shares some of their experiences of ABA and its devastating impacts, and comments on the notion of “modern ABA”. Finally, JayJay explores some of the ways in which they have unmasked and live authentically. 

Transcript

Ginny: Hello and welcome to this episode of Amplified: Autistics in Conversation with Reframing Autism. 

I’m Ginny Grant, an Autistic advocate, writer, and Reframing Autism’s Communications Manager, and I am the host of this podcast. Today I’m thrilled to be chatting with the young Autistic advocate, JayJay Mudridge, also known as Not Another Autistic Advocate. And I’d like to provide a content warning that in this episode JayJay discusses experiences of ABA, trauma, restraint, an eating disorder and sexual abuse. 

I’d like to begin by acknowledging the Traditional Owners of the land on which I’m recording this podcast today, the Gadigal people of the Eora nation. Reframing Autism extends our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal. Always was, always will be Aboriginal land. 

For those of you who are new to this podcast series, Reframing Autism is an Australian-based not-for-profit organisation which is run by and for Autistic people and their families and allies. It is dedicated to creating a world in which the Autistic community is supported to achieve acceptance, inclusion and active citizenship. And we are all about nurturing and celebrating Autistic identity.

[Music continues briefly]

Welcome to Amplified, JayJay! Would you like to introduce yourself to our audience? 

JayJay: Yes! I am … I’m JayJay Mudridge. I run the Facebook page Not Another Autistic Advocate where I attempt to dispel cultural myths about Autism and Autists. I am an educator, so I am like a neurodiversity-informed academic tutor. I work for myself because otherwise employment hasn’t exactly worked out for me, though I did work in the public education system for a very brief period of time. For an AFAB person I was diagnosed fairly early, so unlike a lot of other advocates I have always known I’m Autistic. 

Ginny: Sure, thanks for that, JayJay. So, could you tell us a bit about when and how you learned that you are Autistic?

JayJay: So it’s … it’s interesting. I was … I was identified as Autistic super, super-duper early, especially for people … someone who was assigned female at birth like myself. So … and especially being in the US. I guess a lot of my presentation is fairly stereotypical … when you think about … gendered Autism is silly … but the traditional presentations like when you look in the textbooks. I wasn’t ever told that I was Autistic straight up. My mother, she was very … puzzle piece wielding, used my disability for I perceive it to be social clout, she very much was one of the warrior parents. So I learned that I was Autistic through her telling other people, through her trying to get services … from like overhearing her on the phone and telling me all the things I would never be able to do and mourning that I would like never, like, get married or have jobs or like … Joke’s on you: I work for myself and I’m polyamorous! 

[Laughing]

I learned through the ableist osmosis, so to speak.

Ginny: Oh, gosh. Can you tell us about how you came to understand and accept that Autistic identity?

JayJay: Finding … finding community. I … I always felt forever, like, meeting new friends, romantic partners, like my husband and such, first date I’d be like, “Listen,” I’d sit down and be like, “listen, I’m Autistic; it’s gonna be weird.” For me, saying that has been part of unmasking, but for a while it felt like I was warning people; it felt like I was so fundamentally uncomfortable with myself and the way I acted and the way I was … the core of my Autistic being. For a while I tried to … I didn’t hide it in that I wouldn’t be like “No, I’m not Autistic” … and I was never very good at masking, anyways. When I stumbled upon the Autistic community I saw people like myself and it wasn’t, you know, the Autistic people in the world that I had interacted with, because I did … I went to schools for Autistic youth or youth with other developmental disabilities, so I was around Autistic people but most of them … it was in a very rich town, and I grew up like the type of poor people don’t like to admit still exists in the United States, so that impacted their presentation of Autism, but also it was people who were trying to act the least Autistic in a group of Autistics. The schools I went to were always very ABA heavy, very focused on, like, life skills … meaning, like, you have to do … you have to look, behave and pretend to be neurotypical to be successful, so we were getting that drilled into us which impacted the way we presented ourselves and masked. So finding the online Autistic community and seeing people existing as their authentic Autistic selves, not masking, the unabashed unmasking did a lot for me. And when I started unmasking, you know, it was a lonely process at first and I started my … my Facebook page on a whim to talk about my Autistic experience and it just led to so, so much. It’s … it was amazing. But finding community and seeing other Autistic people that were not ashamed of, of being Autistic, and who didn’t have it drilled into their heads that they needed to be something else, was life changing. 

Ginny: Mm-hmm. How have you connected with the Autistic community? 

JayJay: Through my page, I made a lot of amazing connections. It started … it started as me screaming into the void. I started it actually, like, the first year of COVID because I was bored and just like melting down every day because … I … I had no outlet. But since then, again, through like cultural osmosis, I’ve managed to make a lot of connections and I see, like, I don’t want to say famous advocates, because we’re like a little pocket of, you know, community, but you have these intracommunity celebrities that are just like, “You should listen to them” and I’m like, “Oh, that’s me!” 

[Laughing]

People like Lyric Holman and Tee from Unmasked and Robert from The Autistic Avenger … there’s Amanda Siegler … yeah, there’s just … there’s so many that … Autistic on Wheels … so there’s so many and, like, they’re very … they’re profoundly Autistic friendships … not profoundly Autistic … but I mean the friendships are profound and they’re also very Autistic in that, like, we can not talk for months and I can drop into Amanda’s DMs and be like, “Oh my God, I have a martyr parent on my ass. What is happening? What do I do?” She’ll be like, “Breathe! This is what we do …” Or we, like, Autistic on Wheels and I will, like, penguin pebble each other. She knows I’m super super into linguistics and she will occasionally link me to different articles and I’ll link her to stuff. It’s … They’re very wonderful friendships because there’s not a lot of pressure and then, like Autistic advocacy friendships are amplifying each other’s voices and being like, “Oh, this person has a post on that, actually. Let me link you to them.” 

Ginny: How did your interest in Autistic advocacy develop?

JayJay: It was traumagenic. It was … it was as traumagenic as everything. One of the critiques I always had of my parents … my mother when I was speaking with other people about them because we are … we’re estranged. So, like, my script for that you know was always “She was a very good advocate but she wasn’t a great mother to me” and the more I think about that I realise she wasn’t a great advocate. She got off on having disability as social clout. It was a way to say how difficult I made her life and to this day we can’t be in the same space together, because she was always … everything was ABA, like my formative memories are being nonspeaking. I … It’s fairly well known I didn’t reliably utilise vocal speech until very late, and I’m not talking three or four, I’m talking like eleven or twelve. My formative memories were like being restrained. Like, I’ve been conceptualising a post for my page for a while, but I just haven’t had the wherewithal to write about how no, I was not an easy child to raise, but I could have been if, rather than focus on changing me and put me in pathologising therapies that traumatised me and turned me into an eating disordered, prompt-dependent adult with sexual trauma from being molested because of the compliance aspect, if they had just believed in, accommodated my differences … sunglasses, noise-cancelling headphones are staples in my wardrobe. I design my outfits around them … I very well could have been an easy child because these things are not Autism, these things are trauma. So my interest in advocacy is … a lot of it is sharing my experience having been ABAed, like, up to the eyeballs and the trauma it’s caused but also sharing, like, research to back it up, like, the things that we are saying. A lot of what I post on my page are academic papers and whatnot, because so many people just want to argue with us. Talking about my struggles without assigning moral value to them is also a thing for me. And I’ve found that very empowering for me, but also some of the conversations I’ve had with … with Tee from Unmasked and stuff is like, people aren’t the same and it’s okay. Holding yourself to a neurotypical standard, you’re just going to, you’re just going to, like, it’s like a really slow death. To me, it’s like that … there’s a torture method called ling chi where it’s ,like, it’s called death by a thousand cuts, that’s what holding yourself to a neurotypical standard is and you’re forcing yourself to do things just because other people can do them. So advocacy and finding connection there is … is community for me, is seeing people like me, is seeing people unlike me thriving too. That’s a huge part. One of the biggest critiques I see of the online advocacy community is that we are this, like, bevy of high-functioning Autists leaving out or trying to speak over non-speakers. And, I mean, some of us maybe but that … that hasn’t been my experience at all. I find that parents of non-speakers who don’t know how to communicate with their children is … are the ones who are reading that intent onto us. There is a lot of the advocacy community that tries to distance itself from intellectually disabled people and it frustrates me when … when that’s the perception of the entire community. But I mean, it’s true because it’s one bad apple spoils a bunch not one bad apple and pick ’em out and everything’s all better. But the primary focus of my advocacy has been sharing my stories and doing the best I can with what I have and pointing people towards like, often it’s like, “Well, what about non-speakers? What about people who are severely Autistic?” and I will point them to nonspeaking advocates. Mel Baggs and the videos they made with their communication devices and whatnot are one of my staples. There are several on Instagram that like, “Look, there are people speaking, whether it’s verbal vocally or not, about the issues that you’re saying; you just have to look.” I feel like a lot of … a lot of advocacy is putting aside your own ego and pointing to people who do know better than you, because I’m not … I’m not a non-speaker anymore. We’re not trying to leave anybody out; a lot of it is, like, parents aren’t … aren’t looking. They want to get mad and then be mad at the community and be like, “Look at these Autists who were mean to me online that time!” Whereas there are advocates who are nonspeaking using their AAC devices and saying similar things that we are. 

Ginny: So, as a person who experienced Applied Behaviour Analysis or ABA, what do you want other people to understand about this form of therapy? 

JayJay: Oh my goodness. It’s … it’s fundamentally … I have … I have trouble finding words about this because I was in it for so long and one of the running critiques of me is that I am too aggressive in my disavowal of Applied Behaviour Analysis, but it is … it’s very hard for me to speak calmly about something that … that destroyed my life before I’d even had a chance to begin. Applied Behaviour Analysis stole my childhood and the complex post traumatic stress disorder stole my adulthood. I am a prompt-dependent, borderline eating disordered adult who is just scared of like doing anything wrong because of ABA. And I’ve spoken on this before but like … I have an excerpt in one of Jude Morrow’s books Loving Your Place on the Spectrum about my experience in ABA that led to … from the time I was six to my preteen years … someone was able to repeatedly molest me because … not just because I was nonspeaking but because of … it wasn’t different to me than ABA – not saying that, you know, the people doing ABA to me were molesting me – but it fundamentally taught me that my body does not belong to me because I was put in sensory distress, I was forced to eat things that made me vomit, I was forced to listen to things that made me cry. I was held down. I was restrained. That all of these things led to me not understanding that my body belongs to me. So when the person came to my room at night all those … like, several times a week, my thought was not, no this is wrong, my thought was I need to have quiet hands or I won’t be able to, you know, play with my Star Wars toys. I need to have quiet hands or I won’t be able to eat Fruit Loops. Yes, that’s a worst case scenario, but, like, is it one you’re willing to risk? And even like, I … I’m teaching this at the Neurodivergent Communication class that I teach at the Liberated Learning Centre that I mentioned earlier when you and I were chatting earlier that I am a people pleaser because of ABA. I have learned to so suppress my needs, whether those are sensory needs – like I will be wearing my noise-cancelling headphones, I won’t be taking them off or this needs to be not as bright for me or like, I think I had been dating my husband for, like, a year before I was like, “Can I use the bathroom in your house?” because I was taught that me having needs was me being a burden. And I mean lots … lots of kids are taught that if your parents are emotionally unavailable, but Autistic kids growing up in pathology paradigms … it’s twenty thousand times worse. And, you know, I was always special needs, so any need I had it was at those points considered additional and extra, as burdensome, as, you know, the paradigm we talk about Autists … there are studies that are out right now that are like this is the cost of Autistic people existing. And ABA is part of … is one of the foundations, the cornerstones of pathology paradigms, because ABA’s fundamental goal is to make us indistinguishable from our peers – and it’s not just Lovaas, right? So, this is one of the critiques that ABAers have that I have in my inbox daily and I’m fielding questions like this. “It’s changed.” And, again, one of the biggest misunderstandings about ABA is because therapies that are not ABA, therapies that are trying to teach self-regulation and blah, blah, blah, are often billed as ABA because in the US, where I live, it’s the only therapy that’s covered by insurance. So people say that they’re ABA are not doing ABA, are teaching, like, doing play therapy or occupational therapy or  blah, blah, blah, or even just, like, hang out and teaching kids how to exist in the world … it is billed as ABA so these parents don’t understand that it’s not ABA. So you have parents up in arms, who are like, “ABA’s not like that,” but then you have studies coming out where … you know, they’re pumping kids full of gummy bears for, you know, giving the right answer at the right time. ABA is still like that; you just haven’t experienced it. Your good experience does not invalidate the tens of thousands of Autists online who did go through it, who were talking about how it was destructive and harmful and traumatic. If I took a neurotypical person and I took away – I don’t know, their access to, like, sports ball games – “You don’t get to watch ESPN this weekend” – every time they didn’t act Autistic, if I fed them, you know, gummy bears or whatever their favourite candy was every time that they infodumped or gave them love and praise every time they didn’t make small talk, they’d probably feel like shit, because they’re saying, “This isn’t who I am … This isn’t the way … this isn’t me. You’re trying to train me to be something else.” If a child walks into the ER and they have a broken arm and they’re crying and instead of healing the arm, they are given a gummy bear every time they’re not to cry and they’re taught to breathe through the pain and smile. And now they walk around and you know, can hold pencils and stuff and act like the arm’s not broken. Are they fixed? Because that’s what ABA is doing. I feel like I’ve gone on a tangent – I’m sorry. One of my biggest fears is coming across as aggressive like this, but again, it’s hard for me to talk about. 

Ginny: No, thank you so much. Your insights on this are just so powerful and important. I really appreciate it. 

So just turning to your presentation that you did for Reframing Autism’s 2021 Autistic Flourishing Symposium … That presentation, “Flourishing Authentically”, is just so powerful, and I wanted to provide a quote from it. You said: “As an adult, and as an advocate, the goal is to be so openly and authentically myself that other people feel safe doing so. If existing in a world that isn’t built for me around people who don’t accept me has taught me anything, it’s taught me that if you need to constantly justify your seat at the table, it’s time to build a new table. In my opinion, unmasking is key to living – and therefore flourishing – authentically.” What are some of the ways in which you live authentically?

JayJay: So, the first way in which I live authentically is I upfront tell people I’m Autistic. I understand that that doesn’t work well for everyone, especially black and brown Autists. That could put them in … in danger. I have the privilege of … of being able to say that. I tell people straight up that these are the ways I exist, and I make it a point when I have sensory differences and ask for accommodations I do say, “because I’m Autistic”. The other day, I had … I said, like, I don’t like comparing different types of oppression, but when I was advocating for myself the other day at a space that is, like, borderline sacred to me, I was like, Oh, actually like not doing that is making the space inaccessible to me; it is similar to not having a wheelchair for me, because Autism is a disability. Disability isn’t a bad word. One of the biggest ways is committing to the stim, and that was one of the hardest ones for me to embrace. I will unabashedly happy-flap. I will spin around in circles and … and squeal. I hop from one foot to the other. I rock back and forth. These are the ways my body regulates and they are causing nobody harm. You being a little bit uncomfortable with the way that my body moves and the way I regulate is not you being harmed. And setting the boundary that if the way I exist makes you uncomfortable you are welcome to not, to not be around me, because I’m not harming anybody by existing the way I exist, but if I change that I will be harming somebody and that somebody is me, and I am unwilling to do that … these days. And also, like, as an add-on to … to committing to the stim and the way my body moves, and no longer, like, conforming to, like, sit up straight because that’s the way to do it; neurotypicals like that, or whatever. Or modulating my tonal inflections and whatnot is … Use of adaptive sensory aids, my noise-cancelling headphones, my sunglasses everywhere. And I have stim toys all the time. All the time! Like fidget spinners, pop fidgets, but also like my comfort items, I like really smooth rocks. I like really crunchy things. I always have, like, a wad of bubble gum in my mouth and my hope is that other Autistic people see me doing that and see that as permission for them to do the same. Because everybody deserves to exist comfortably … Maybe not everybody deserves to exist comfortably – like, sans, like Nazis and terrible people. No, you don’t deserve to exist comfortably, but like, for the most part people deserve to exist unobstructed in ways that don’t hurt or impact other people negatively. And these things, while they may seem foreign or weird or even inappropriate to neurotypical people, again are not hurting people. I’m hoping that especially parents of people I tutor, parents of Autistic youth in places I … I go, see that and they’re like, okay, well, they’re doing it, so … and they’re okay, so, like, maybe I can too. And I hope that doesn’t sound egotistical of me. And also, like, communicating … communicating my needs has been huge … like, whether it’s a confidence booster for me or not, but like the ability to exist comfortably – “actually I need that light off”, “no, that’s too loud for me”, “I can’t … I would love to go there with you but I can’t go in grocery stores or I can’t … I can’t eat that”, because XYZ ABC. And sticking to it, whether people understand that or not. And it’s not easy and you do lose people when you start existing authentically. You lose a lot of people. But my … my thought is – and it takes a while to get there – is that like, do I want people who love my mask but not me? Why do we accept Autism until I start acting Autistically? And then there are the times when you exist this way and … I mean, I’ve lost friends who were dear to me, and likely undiagnosed Autistic because they saw me existing in this way and that triggered their own insecurities and they didn’t want to be around someone who was Autistic and not okay with it but willing to create the boundaries that they wish they could. And I don’t want … I don’t want people who love my mask, I want people who love me. I … I had a conversation … I recently made a group of allistic friends who are no doubt allistic but have been very kind and accommodating to me and I mentioned – because one of my New Year’s resolutions was to tell people what I really do think about them, especially when it’s good. And I sent a text to our group chat and was like, “I was just thinking about all of the ways you’ve never made my disability seem like an inconvenience to you.” And they all responded back, they were like, “We’re not doing any extra work. What we do is just part of knowing and loving you.” And … oh my God, instant tears, because, like, those are words that I’ve never heard and I was able to make those connections because I’m existing in an unmasked authentic way. The connections you make when you’re masked, while they may be real, I can’t believe that they’re anything if sort of superficial. 

Ginny: In terms of the advocacy work you have done, what are you most proud of? 

JayJay: It is my favourite when parents come to me and they’re like, “I read your thing and I stopped doing XYZ and now my kid is thriving.” I’m less proud of the big things that have come about, like my blog being on Reframing Autism, the fact that I’m regularly asked to do speaking engagements and people seek me out, like “You’re someone I want to talk to”. The fact that famous advocates mention me or link to my writings, that I have been published in book anthologies, those are all wonderful things but it is the small, private moments between fellow Autists or parents who are, like, “I read. I stopped. Everything is better now” or “how can I be a better parent and advocate to my child?”, those are the moments that mean the most to me. And I make sure to tell those people, like, “Hearing these things makes everything worth it … everything.”

Ginny: Thank you so much, JayJay. And thanks to our audience for listening to this episode of Amplified. 

If you’re not already part of our social media communities, please do join us online. You can find us on Facebook, Instagram, LinkedIn, Twitter and YouTube. We also have a website – www.reframingautism.org.au – which has a treasure trove of Autistic-created resources.