EP43: "Where there's autistic people, there's always gender diverse people..."

millie joins me to talk about autistic culture, creativity, surviving in a neurotypical world, and finding true community. We get into late-diagnosed autism and ADHD, harm reduction, AAC (augmentative and alternative communication), and why autistic spaces can feel like a breath of fresh air. millie also shares how surviving — and thriving — as a disabled, trans, autistic person reshaped their ideas about belonging, burnout, and joy. What if the world isn't made for us — but we could build something better? A rich, raw, and hopeful conversation you won't want to miss.

Watch this episode on YouTube.

Check out millie's website.

Higher Listenings: Joy for Educators
A new podcast from Top Hat delivering ideas, relief, and joy to the future of teaching.

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Theme music: "Everything Feels New" by Evgeny Bardyuzha.

All episodes written and produced by Kristen Hovet.

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Chapters

• 10:42 [Ad] Higher Listenings: Joy for Educators
• 11:20 (Cont.) EP43: "Where there's autistic people, there's always gender diverse people..."

Transcript

Kristen Hovet (00:00)
Today I'm speaking with millie, an autistic transgender individual who is currently based in Edmonton, Alberta. Please say hello to my guest for today, millie.

Millie Schulz (00:11)
My name is millie, Millie Schulz. My pronouns are they and them. I'm autistic and ADHD. If I've had difficult times in life, I like to use that experience, hopefully, to help other people not have to go through the same difficulties I did, I guess. So that's why I have a YouTube channel where I talk about my experience and I do a bit of advocacy when I have the energy. I'm disabled, so...

really, it sounds like I do a lot, but most days I'm just trying to stay alive till the next day, to be honest. I'm just managing health and appointments. And I generally, I'd say a creative person. I'm just interested in a lot of different creative things. I paint and I am a bit of a photographer and I love music above all else. So I love DJing and dancing and that kind of thing. And sharing that

with everyone. I love talking to people about creativity as well, because I think people are more creative than they think they are. It's very ADHD too, I feel like. I'm just doing a lot of different things and I've had that in the past too, where I felt maybe like our world is set up for people to stick to one thing and continue on one thing and really build on that. So I felt down for a long time about jumping around, but I find that

now that I've stuck with it long enough, I can find projects where I can put all those skills together that it would be difficult for somebody else to have such a diverse range of things they have knowledge on all at the same time. So I can do very specialized things sometimes.

Kristen Hovet (01:55)
Since the listeners love hearing autistic origin stories and ADHD, if you'd like to share as well, would you feel comfortable sharing when and how you were identified as autistic?

Millie Schulz (02:06)
It's just like I had actually suspected ADHD from much earlier on. So I was diagnosed with both in my thirties, but even in high school, I think that's when I was first also diagnosed with other things. Like first it was with depression and that kind of thing. And later, generalized anxiety and that kind of thing. But I had suspected ADHD and,

again, like a lot of people, it was even to me, you know, I just had a real misunderstanding of what it was. So I kind of dismissed it. And then it was much later, losing jobs and having to kind of reinvent everything over and over again and go back to school and try to find a new thing and start from the beginning over and over again. And my mom, especially, you know, I'm lucky my family supports me when things kind of fall apart. And then my mom, especially,

was paying attention to, she was kind of getting some things about why sometimes, you know, sometimes I'd have to quit because it would just, I would get burnt out and overwhelmed or looking back as things could have been more accessible. But then times, if I was fired or let go or something like that, you know, my last major office job, I just didn't really get it. And to my mom, it was kind of made more sense why they let me go. Like maybe it was not fair, but, you know, she got it in the context of

how our work system is. And that's when she was kind of, you know, like maybe you're, do you think maybe you're autistic? And she worked with autistic people, helping find employment, that kind of thing. And at the same time, I it was partially that, and it was also like the YouTube algorithm, weirdly, was just serving me up all these videos of, yeah, especially autistic women.

I'd gone through this whole thing in the years prior of realizing I was transgender and transitioning and everything. And then, yeah, I was just kind of like, I understood what made that fit and having that realization. So I was getting the same kind of feelings of like, oh, why does this make so much sense, kind of thing. And then I did like a lot of people, just absolutely devoured so many books and everything, learned as much as I could, and then was looking for a psychologist to do the

diagnosis, and that was nerve-racking too, especially with the gender issues making it more complicated. I knew there was this kind of thing going on of this maybe autism presenting differently based on gender. And I don't know how true that is now, but I know there are different presentations. So I was kind of like, are people going to be able to see through, like, you know,

I've had to be in high masking positions for so long. And, you know, those were the kinds of jobs I was doing and stuff. So then I did the pretty classic formal diagnosis. It's very strange because a lot of the things, I mean, I find the process fascinating. So I thought it was really interesting. It was exhausting, really caused a lot of like shut down in and of itself. But then some of it seems kind of absurd, you know, because it's so designed for children still. And then some of it I felt like just

really lasered in on some really deep down anxieties about myself, you know, like really pulled some of that stuff out. So that was hard. I remember one of the most difficult parts was just the part where you're given some objects and told to tell a story with the objects. I always felt bad before because... I love kids and, you know, kids want you to tell them a story or make something up. And I always had difficulty with that. And then later,

you know, as an adult, like people want to play a game with improv or work situations. That goes into my variable ability to speak and I'd have situations of mutism and stuff like that. That just got into kind of a deep anxiety. And I always had this internalized thing of like, somehow not being creative because of that. But then I realized later, like I really am very creative. I just, like a lot of things, had a

misunderstanding about what that is and just negative internal thoughts about things. But yeah, I got the diagnosis. It was very, very expensive and that's, I'm very privileged to be able to have help paying for it. I couldn't have paid for it on my own.

Kristen Hovet (06:41)
How do you think that diagnosis or those set of diagnoses changed your self-concept, if at all?

Millie Schulz (06:50)
Oh my gosh.

Yeah, so much. Like, just absolutely, you know, I was so nervous about the result and then so incredibly relieved. It explained so much and it finally gave me this ability to actually advocate for myself, you know, like things I knew I needed help with, but I didn't know how to explain it and

I never felt like I could take up space, so I feel like I've changed hugely in that regard, where I would absolutely almost never ask for help, and that caused real problems in school and that kind of thing. And I would just fail in an assignment, also because of perfectionism, but because I didn't want to ask for help. I got through all the school, because I'm lucky, I can kind of brute force intelligence, but

it's wild to think I went through so much of school and university without even being able to read or write more than a few sentences without extreme difficulty and struggle. It's been amazing just to be able to actually take up space and ask for help and, and really slow things down. Like the world just moves too fast. And I think what people don't see is that I was either in a constant state of burnout,

there was that, but then also on a day-to-day, I was trying to figure out with doctors for so long, like I was having these periods of dissociation, like more like derealization. That was happening every day, multiple times a day. That's so not good, right? It's like, I can't believe how I just lived like that every day, you know? Like I just feel so much happier about myself and who I am. I rarely have

dissociation episodes anymore, even though that was happening every day before. I have even better friendships now, much more based on acceptance of each other, who we really are. And before I was much more masking, trying to be what people wanted me to be. And then everybody was different. So I was changing myself for every single person in a situation and I didn't know who I was. So yeah, now I really know a lot of who I am, I feel like.

And that's huge.

Kristen Hovet (09:20)
Yeah, thank you so much for sharing. So you mentioned via email that so many things tie back to culture. How do you define autistic culture and what aspects of it do you feel are most overlooked or misunderstood? I know that's a big question.

Millie Schulz (09:39)
Autistic culture and neurodivergent culture, to some degree. You know, speaking of friends, learning about myself and my own traits and then how other people are different, neurodivergence, listening to your podcast and everybody educating about these things, it's interesting to look back and see all my close relationships have been with autistic people or ADHD people or people who are strong in those traits. When I was really unhappy about things

and I was working on myself, going through transition and stuff, you know, I'd go through... to different support groups and it would fail a lot. I love trans groups and queer groups and everything. But never until I went to autistic groups... And I feel like it's this so like hidden away thing that shouldn't have to be like, that's a big part of what I want to say. It should be more available and accessible for

autistic people to hang out with each other. When I did finally, was finally able to go to these groups, that's when I really felt the most I had in common with people and I felt the most safe. And I could really, you know, about things like stimming and, ⁓ when you're just out in the world with other people, people are so, I don't think people even realize how judgy they are. I hadn't noticed like you're doing a tiny little thing strangely and point,

you know, strangely, like they, as they would view it strange, but it's so nice to be in a group and just feel elated afterwards. And I found it so interesting that more than any other group where I was looking for a community that, in the in-person groups, I think that's a big part of autistic culture specifically is doing things through written communication is often easier. Like I use AAC and text to speech and I try to

text as much as I can or write emails. So a lot of people are using Discord and things online or Reddit and that kind of thing. I just found it so interesting that being autistic, I relate so much to people who are from all over the world, you know, especially through online. I have some friends that are from Australia and South America and different parts of the States and Canada, Europe, wherever, right? And they're

older, younger, different genders, different gender expressions. But I still relate more to them than I do people kind of in my own demographic and area. But yeah, I love that it's so much about the exact opposite of what stereotypically and medically and negatively people think about autistic people. Like if people think stereotypically that we lack empathy or that we're not social,

if you could go to an autism social or support group, you would see that we're so much like very aware of each other's needs. You know, I have difficulty with lights especially, and certain kind of noise. So, you know, people check in with each other and of course some of those needs clash. So I feel like people are good at bringing it up because another part of it is being so direct and normally

I'm direct with people and gotten so much trouble with that growing up, but there I can just say I have an issue with something and it doesn't come across as mean or rude and we can discuss it. I love that we can get just straight into, I feel like every one of those groups, there's always somebody I meet in those groups where I've been talking to them for 15 minutes and we're just talking about the heaviest

things and like existential kind of things about life, like as if we've known each other for five years or something and it's only been 15 minutes. So it can be very intense, but yeah, it feels so good. And being able to share, that to me is one of my favorite things, like show and tell, info dumping, whatever you want to call it, just talking about things they're really interested in. And I find it just fascinating how people can just get so

interested in very, very, very specific things and get so deep into it. Even if it's something I'm not interested in, I love just seeing, you know, when somebody's excited about something, I always love seeing that. Whereas in contrast, most of the times in life, I want to talk about something exciting and I can just feel people shutting their brains off. And that goes to, as well, I think people think we don't notice that kind of thing. I know for myself, I'm like

hyper aware of people's change in mood and that kind of thing.

Kristen Hovet (14:34)
Definitely, totally agree. How has learning about cultural humility in the context of Indigenous cultures influenced how you view autistic culture itself and the need for cultural safety for autistic people?

Millie Schulz (14:47)
I was working in harm reduction. That's one of the jobs I'm most proud of and really passionate. Harm reduction, even before doing that as work was just part of something I really believe in. It's just through the nature of the work, we were working with a lot of Indigenous people and because of that past history of trauma and trauma is really what almost always leads to

substance issues and addiction. That's been my own experience of past trauma as well, related to being transgender, being autistic, multiply marginalized. For us to do a good job and be humble and have humility, we learned a lot about these things. Through the work I was doing, we learned about it in the context of Indigenous culture,

especially in Canada. When I was looking at the history and the themes, so we're learning a lot about the history of residential schools, and it's always the same themes that comes from a similar place, right? That's what I was looking at. It's the dominant culture thinking their way is the right way and thinking that the minority culture is worse or evil, like

lesser than, you know, basically less human. It's always this story of dehumanizing the marginalized culture. And I was looking through those things and all these things were coming up kind of at the same time. I was learning so much about Indigenous history in Canada, these experiences of marginalization. At the same time, the Black Lives Matter movement was happening and I was going to watch speakers and they were talking about

things that were happening. I was at a rally and people would raise their hands if they had similar experiences. And throughout this whole thing, you know, I was thinking, it was like, I've had all these similar experiences. And then I also have a lot of privilege because I'm white. It just puts up more and more barriers depending on your context. So I'm autistic and I'm transgender, two things that overlap a lot and create a lot of

difficulty in my life. And then being white and coming from a middle-class family, that's also helped a lot. You know, it's helped pay for some medical support that I wouldn't have had otherwise. The people I worked with, we're the worker and not there getting the services, because I had my own addictions issues, but because of my privilege of being able to get support and have a family that could support me, that allowed me to...

gave me more of a chance to pull through it. Anyways, just having so many similar experiences and then working in these places, and I saw a lot of the people there were also neurodivergent too. And then again, because of their cultural context, they're not getting the support, they're getting even more stigmatized, so having even more barriers to healthcare and that kind of thing. Yeah, so I just saw this relation that as we're learning about it, it's all about

having that cultural humility and cultural safety. So unlearning trying to say my way is the right way. And if people did that for autistic culture and learned about autistic culture, then that could make people's lives so much better. So that's more the social model of disability. If people could treat us in a more culturally safe way and have safer spaces and ways of accessing

healthcare and that kind of thing, that would help so much. But at the same time, because of certain sensory issues and shutdown and that kind of thing, there's a lot of things that feel more inherently disabling. But then again, also, if the world was more supportive, those issues would be lessened, you know, like my issues around noise and light. Spaces could be designed to be

more safe and have more options so I could access those spaces more easily. It was just really frustrating because it was like we learned that cultural safety, cultural humility is for all marginalized cultures. But then I found people really only took it mostly in the context of racism because that's what they were most seeing at work. So I found I was

providing this kind of care as best as I could and trying to have humility and then not getting that back through work. I'd be giving everything of myself and sacrificing myself to help and then, when I needed support, people didn't understand. They didn't know enough about autism or autistic culture and that kind of thing.

Kristen Hovet (20:06)
Definitely. And I like that shaping of the autistic population as a culture. I think listeners will, autistic listeners will know right away what you meant by dominant culture. And of course, for those who are listening, who are maybe non-autistic, that means neurotypical or non-autistic culture. So the sense that like almost everything in our society, in our world here in Canada and

North America, is based on neurotypical or non-autistic needs and desires and wishes and I guess what they think is appropriate for everyone. When I first heard about that shaping of autistic culture, it kind of changed my whole understanding. I just had like a huge aha moment for myself anyway.

Millie Schulz (20:56)
Exactly, right. That's kind of how it felt like too.

Kristen Hovet (20:59)
How has your experience as a transgender person shaped your understanding of addiction and the work you do in harm reduction?

Millie Schulz (21:07)
You know, I've had both sides of the gender experience in a lot of ways. Again, speaking culturally, like we still treat people of different genders very differently and have different expectations and that kind of thing. Going through a whole wide range of that, just like people in cities often end up being more on the left end of the political spectrum because they're exposed to so many people, right? As soon as

you experience people, it's so much easier to understand them. So I felt like it allowed me to really relate to a lot of people more. Like it was great in the... especially working in harm reduction, you have people in very, they're very distressed and having a bad day. So you have to be very careful and calm things down and be relaxed and relatable and de-stress and,

yeah, de-escalate and those kind of things. So it really helped me, I feel like, talk to any person, you know, especially on either side of like a binary gender divide, but then especially really relate to other transgender people, of course. And, you know, I've seen now so much the overlap. Where there's autistic people, there's always gender diverse people and queer people.

And then unfortunately there's also trauma and health issues. So working in the harm reduction spaces, especially, you know, there's just a lot of people I could relate to and that people could relate to me. The other thing was really like, again, speaking to privilege is like, I started a lot of my life, I was being treated like a man, a white man. When I transitioned, then

I just had that experience of losing a lot of that privilege and being treated differently. And it was kind of this dark thing of like, well, at least you're treating me like the gender expression I'm comfortable with, but like in the worst possible way, unfortunately. I remember that causing especially some work issues and that kind of thing. Again, that just allowed me to relate to people who have had their

power taken away and their voice taken away. Like as I've become more comfortable with myself and more happy with myself, at the same time, I've had a harder and harder time having people take me seriously and listen to me. Like every step I take of saying I'm transgender and then discovering I'm autistic and ADHD and then being open about that,

and then being open about being disabled. Every step of the way it's more like being treated like... I notice... I have the same good ideas, I feel like, about things as I used to and one of my favorite qualities about myself is being insightful about things and learning lots and, yeah, I just found that people were listening to me less and taking me less seriously and stuff.

But the people that I really want to help now listen to and respect me more and, you know, likewise with me to them. So it just really upended my kind of world of relationships, but it's for the better. It's just a very painful process.

Kristen Hovet (24:51)
That's really interesting. Thank you for sharing. What shifts or changes do you think are needed in addiction recovery spaces to make them more inclusive and affirming for both neurodivergent and transgender individuals?

Millie Schulz (25:09)
Yeah. So my experience, of course, again, was with the supervised consumption side and more of those harm reduction spaces, but even just accessing medical care, you know, I'm trying to do a lot of self-advocacy and that also comes with it a lot of pain and, um, getting myself in trouble or, you know, none of these places should give people worse medical service or

addiction service or mental health treatment because they don't like the person. But unfortunately, all the providers are human and that bias underneath comes through. That goes back to your previous question too about... we were learning about that inherent bias, like growing up in a dominantly white culture, you know, even if you don't want to admit it, like we have this inherent bias that's racial bias against people. And then I learned about that

research about the double empathy problem and things about how allistic or non-autistic people have this inherent bias against autistic people, like before they even get to know us, you know, maybe feel that we're less trustworthy. And then I saw people getting treated that way, you know, people getting misdiagnosed or just being labeled as troublemakers. So I think that's a big thing that really needs to change.

Again, I'm not the mental health expert, but from what I've seen and what I've learned, there's a lot of misdiagnosis of things like borderline personality disorder, and especially to women, and especially to women of color and Indigenous women as well. And it's a way almost just to label them as trouble and be more stigmatized. And I think, from my experience, knowing

myself and my own diagnosis and then working with people, you know, if they had more access to possible ADHD or autism diagnosis and possible support or treatment or things related to that, they might have a huge quality of life improvement. So that's just this access to... it's like all our medical care, just focusing too much on treating

the effects and not having time to see like what the underlying... like what's causing the underlying trauma? Like I'm being marginalized in society and rejected and that's what's happening to the other people with addictions. But nobody's looking at why and maybe if they're combative or, you know, argumentative, it's like, why is that happening? You know, if you're being rejected and screwed over and

gaslit by the system constantly, of course you're going to be angry. That's another thing, like not allowing people to be justifiably angry. I find that a lot. Like if I have any emotions accessing services or support, it feels like it's never justifiable. And that's not even getting into being, looking at it strength-based. So many autistic people are so creative and so passionate. So I've seen people in the harm reduction space who are lucky enough

that someone saw them. I've seen people come from addiction and then be mentored into a research position. And now they do research, even though school wasn't accessible to them. And they got very lucky, but I just saw almost every person had some potential to give back. And it's all these people with all these talents and passions. And it's just so unfortunate that it's being squandered in a way.

And then some things are just very basic and simple that seem ridiculous that they're not a thing yet. Like a big thing for me is I've extreme difficulty with phone calls. And then when I'm out and about, I'm always using AAC because between auditory processing disorder and then a speech condition as well. But a lot of doctors are very impatient. They don't have the time.

The people booking the appointments, they don't want to let you do it through email. Sometimes it's not even possible or they pressure people into doing it over the phone. You know, just having options for lighting. A big one I saw is like, how do you have people who are autistic or ADHD and expect, you know, especially if they're living on the street, how do you expect them to just keep all their appointments and paperwork in order? They're going to have a lot more

barriers to be able to do that easily. Yeah, learning what to appreciate. Because I saw so many people who had good ideas and would just be ignored because they didn't have, especially if they didn't have a degree, you know, even if they transitioned from accessing the services to working, they couldn't get into higher up positions if they didn't have a degree. So I think that really needs to change too.

Kristen Hovet (30:22)
For sure. Thank you. And in your response, you mentioned the double empathy problem. So I just wanted to let everyone know that if you haven't listened to that episode yet, I did do an episode on it last July 31st. It's called episode 36, Autistic Empathy and the Double Empathy Problem, if you would like a definition on what that is. So can you please share an example of a space, event, or community

that you found to be particularly affirming, supportive, and safe.

Millie Schulz (30:55)
It's so rare. Some of the things are almost unintentional. Like this isn't the best example, but I'm going in degrees, I think. I think of... when you go back to culture, I was born in Germany. There's a stereotype of German person coming here, they're much more direct. People see them here as rude, but that's a judgment on them. Like as if they're a bad person, but obviously in Germany, they'll just, you know, be normal.

Or I've learned about things like Finland being a place where some autistic people like because they are culturally, people don't make small talk as much. I've heard autistic people really like Japan because the rules are very clear cut and the expectations. I like this idea of kind of a whole different country and culture feeling safer. Whenever I go back to Germany, I feel a lot safer. So it's unfortunate that in my own country, I feel a lot more

unsafe, like people are so indirect. But the place that I'm looking for again, it was like when all the stars align and something happens and it's so beautiful. And then that gives me a model of what to strive towards. We had this group when I was still in Victoria, now I'm living in Edmonton, but I was lucky enough to have an OT, an occupational therapist who really helped me. She wanted to start a group because so many of

her adult clients, myself included, were talking about how so many services just focus on kids and families, like parents of the kids. That goes back to feeling erasure too. And it just feels like, go to find things, it's like, oh, it's not for me. It's not for me. Okay. I feel bad and like I have imposter syndrome or something. Anyways, we were all just looking for something where it could be

really autistic adults. And then sometimes those things do exist. Like I find what exists here in Edmonton, there is groups for autistic adults, but they're through an organization that I feel like doesn't have as progressive and like a strengths-based view of how to support autistic people, or at least like the people who are in charge are not autistic.

So that really comes through. So that relates back to doing the harm reduction too, like having the humility is like listening to the people, even if you can't have the autistic people in the positions of power, then you really need to listen to us. So I found with this OT, she was amazing. She was really listening to us and what we wanted it to be. And it also just happened to work out that I was living in this building,

a nonprofit and they had a communal space. I was able to book that for this group. So OT was organizing it and we had this group and they were in my building. So it was extra accessible for me. I just had to walk downstairs. That would be one thing. Like if we can have more of these spaces all over the place so people don't have to travel too far. Anyways, it was so beautiful because people kind of chose... we would choose together what we would do in some groups. We would kind of chat, but because

it was an autistic space, we'd always have an activity. I find that so important. It's just too intense to just chat. And I'm very talkative, when I can talk, and some people can't talk at all or don't want to talk in a group. So we were just very open about, you know, people can show up however, you can talk or not talk, you can stim as much as you want. We'll talk about those conflicting needs, if it comes up, that kind of thing.

I like when somebody moderates a group to help with a conflict, but then doesn't dominate what the group should be doing. Like we kind of directed what we'd be doing, but then the moderation was really to just like help us work out conflicting needs and stuff like that. And it was just so pure fun. And I love... one of the things I love most about being autistic is like unabashedly being like excited about things that other people

might be embarrassed about or just like being able to just play, you know. Literally once we started just talking about how fun it is, like those marble run kind of toys, like things like GraviTrax or the more basic ones I had when I was a kid, like the marble run plastic ones. And then OT was like, oh, we have a bunch of that stuff in the office. I can bring it. And we just like all, as a group, built this whole giant marble run. And that was really fun.

And we had one where people just shared their different hobbies and brought stuff in to share their hobbies. And yeah, I just remember people's feedback being that it was one of the safest spaces they had in a long time and some of the most fun they had in long time. And that's the kind of thing I'm always looking for again.

Kristen Hovet (36:06)
Yeah, that sounds really nice. One thing that I've noticed recently, and I guess I must have witnessed it a lot, but I'm just becoming more aware of it. And that is when you're in meetings, it can be in person or on Zoom, and because I'm also very direct and I'm also very honest, if someone asks me what I think about something, I will tell them. And from a lot of people, you'll get this like, oh!

Like they'll be like off put because you've just been really direct and it's like, well, you asked me. And so that response in itself will make me shut down. So often I've noticed this pattern is like, once someone does that to me, it'll be hard for me to speak with them in person or on Zoom even again. And I won't... I'll have a harder time opening up about anything. And so when they ask my opinion next time, I'll be like, oh yeah, I don't have one, even when I do.

You mentioned that you use augmentative and alternative communication or AAC in daily life. How does this impact your experiences of masking or unmasking?

Millie Schulz (37:10)
I think part of using the AAC, so there's so many kinds of AAC and I've tried different things. I have some things here, like with my OT, we were trying, you know, different cards and stuff like that. And I do use these in certain situations, like especially kind of the most difficult situations, like traveling, going on a plane, stuff like that. I find those are the kinds of situations I find the most extremely difficult. But yeah, day to day I'm using a text to speech app on my phone.

I have specific phrases programmed or I just type phrases and it speaks it out loud. Yeah, at this point I'm using that every time I'm out of the house, every time I'm in a group situation. I use it on Zoom for group meetings. It was originally set up because of... as I slowly shut down, then I lose my ability to speak. And then also sometimes it was this situational mutism, anxiety based. So there's lots of different things going on.

So I was using it, you know, the OT was helping me with that and getting it set up and trying it out more. I was just shocked. It was one of those things where like when something's difficult, but you've got such a positive reinforcement in the experience, then it makes it easier to do. Unfortunately, a lot of things in life are the opposite and we get negative reinforcement when people are judgy, but I was surprised how much, by this, people were like really slowed down and were friendly,

and like took their time. So much of that issue I had in everyday interaction, my brain just couldn't process things as fast as people expected to keep up for, you know, shopping or going on the bus, or simple things like that. And that was causing a lot of being flustered and anxiety and meltdowns and shutdowns and stuff. I can understand, like people just see me, you know, it's an invisible disability. Like they can't see that

I have any issues just from looking at me. People just expect me to be able to keep up and communicate how the rest of neurotypical society does. And then using the AAC is like all these interactions were going so much better. And I even found that caused me to smile more and people would smile back at me more. I almost never had that experience with people,

like with strangers out in public before. And I was trying to figure it out, right? And it's like, oh yeah, cause I'm doing this. It's like I can't mask. It's like a signal to somebody that they need to slow down and they need to have more patience. Some people occasionally would still be dismissive or impatient or whatever, but overall it was a huge improvement.

And I even found other unexpected things, like part of the thing... like now we're talking a lot and I'm going to need a huge rest after this because I can talk myself into overwhelm and overload and shut myself down through my own talking. So it just opens up all these ideas to even use it. I use it even more then now, like preventatively to not get overwhelmed, to keep myself from talking too much, if I know I need to use my brain later in the day.

If I know I need to slow the situation down, like in a medical situation where a specialist doctor, you know how they like, want to not even sit down and just be really fast and overwhelm you and then leave. And then you leave and you're like, oh, I forgot all the questions I was going to ask. If I use AAC, I find I'm more likely to actually ask the questions I was going to ask. And then in the autism groups, I've been using it. And then other people have been like, wait, I can do that?

Kristen Hovet (41:02)
Yeah, that's interesting. It's almost like the AAC, whatever the device or object is, is almost like a bridge between you and another person, like an unexpected bridge of communication or understanding or something like that. You spoke a little bit about this already, but is there anything you really want people to understand about AAC that they might not already understand?

Millie Schulz (41:24)
I've tried to talk about this in some of my videos before too, because of some privilege of being able, you know, I can talk at least in this situation like this, where I've set this time of day and I'm having a good day and my medications are working and I've rested up and that kind of thing. You know, sometimes I have to use AAC, but a lot of the times I have the choice. I think that's what I want people to understand is like, a lot of the people who don't have a choice are also the people

that you don't hear from as much because it's more difficult for them to do a talk or an interview or, you know, cause they're going to have to have somebody who is, you know... like, you're amazing about making it feel safe to do this. And, you know, like I asked you about stimming and that kind of thing. Somebody who has to use AAC all the time, you know, if they do a YouTube video,

people have to be willing to slow down and listen to the slower pacing. And we live in such a fast paced and especially impatient world. My experience of autism and disability and AAC, too, is just, if you can just slow down, that helps. Just have some more patience and give me some space. And that helps the most.

Kristen Hovet (42:52)
That's a really good point. Yeah. millie, thank you so much for being my guest on The Other Autism podcast. And that's all I have for you today. Thank you so much for being here. Until next time, bye.