Innovating Through Neurodiversity, Creativity, and Resilience with Alix Generous #222

You're listening to the Autism Weekly podcast, each week we share community voices and bring light to stories that increase awareness, acceptance, equity, access, and inclusion. If you haven't already, subscribe to join the Autism Weekly family. I'm your host, Jeff Skibitzky. This week, we're joined by Alex Gendres, an Autistic Advocate, Entrepreneur, Scientist, and PhD student in Holocaust and Genocide Studies. Alex has used her unique perspective to drive innovation in science, technology, and neurodiversity affirming practices. Today, we'll be discussing her journey, how reframing autism as a difference can inspire better support systems, and her passion for creativity, resilience, and inclusion can open minds of others. Welcome to the podcast, Alex Gendres. Hello. Thank you for having me. It's my pleasure. I think that one of the things that we all need to do and do more frequently is stop, hear somebody else's experience, hear somebody else's perspective, and learn from them. I'm hoping I had the opportunity to do that today. Before we go down that road, I'd love to hear from you what sparked your interest in neurodiversity, in the empowerment and advocacy end of this. What brought you to putting time and energy to that? What brought me to putting time and energy into neurodiversity and advocacy work are my own lived experiences, feeling powerless, experiencing malpractice, and dealing with having undiagnosed autism and ADHD growing up. That is really my driving force, is wanting to make sure that other people don't have to go through the same sorts of experiences I did trying to figure myself out. Is that feeling that you experienced and might even still be experiencing today in some regards of not being empowered, not necessarily feeling respected all the time? Is that something that you view as people are consciously doing or do you think that this has just been our society has merged over the years to almost have this devaluing principle towards people that are neurodiverse? I think what a lot of people who aren't as familiar with more modern ways of viewing neurodiversity can view differences as an inconvenience and something that makes things more challenging. That is the narrative that I want to reframe and tackle head on. What are some of these differences? I feel like sometimes putting a picture around it or a story around it helps to bring people into that world, into the experience and understand what emotions are being driven there. Do you have an example of a way that your differences personally were looked at as an inconvenience to somebody else and the way that they responded created that friction? Sure thing. When I was in second grade, I was sitting at my desk in the classroom with everyone else and this was before I was diagnosed. I had an ADHD diagnosis but not an autism diagnosis and I remember the sound that the fan was making was irritating me to the extent where I was borderline throwing a tantrum. It was like a clicking noise and it was distressful enough for me at that time and at that age that I had a fair amount of emotional reactivity to it to the point where the teacher would call my school, contact and talk to my mother and just make a report out of it, so making a theme out of something. That is an example of how a sensory difference associated with autism can be viewed as an inconvenience and escalate to something unnecessary if the right tools were put in place. When you talk about a situation like that, I think that that is unfortunately not all too unique. I think that happens way too frequently for people who are experiencing the world slightly different and when you think back on what the expectation was and I have been working within the field of autism and neurodiversity for 25 years and I remember back historically it was I am going to teach somebody to deal with it. I am going to teach somebody to just cope with it even if they are struggling with coping with it, us not knowing what that feels like, how that responses and what that is taking away from their energy to be able to do everything else that they should be doing at that same time. I think that has changed over the years. I think we are getting better at it but not good yet. When you are looking at these sort of things and if we are able to reframe it not as a deficit and say I need to fix their tolerance of a fan going around and instead looking at a difference what would be an appropriate response to something like that? What would the teacher of today be expected to potentially do? Ideally the teacher would be expected to offer safe alternatives to help decrease the amount of distress like noise canceling headphones. Their earbuds are maybe a short break outside of the classroom and then simply turning off the fan it wasn't particularly hot or cold in any way that I am remembering. It was a pretty neutral temperature, it was just the sound. Those are just some alternatives that are a little bit less extreme than calling the parents and making it a thing as I have said previously. You persevered through some of these societal reactions and responses and societal barriers that exist and you have done extremely well. Whether that is doing scientific research, whether that is presenting, whether that is helping to be an advocate and being out there with the community. It is almost as if you had to battle some of the conditions that existed in society as far as how they were responding to your differences the entire time versus being empowered to be able to work through some of these things collaboratively and utilize your strengths throughout the process. How has your neurodivergent perspective influenced some of the work that you are doing right now in science, technology and entrepreneurship? What is it that you have taken from this that you have been able to enhance the work that you are currently done? What I would say is that my mind is an asset and I don't view it as something that makes doing work or other things more difficult given that I have the tools to be able to complete certain tasks. I think one of the things that I should bring up is that when you are given an autism diagnosis or any diagnosis of any kind, there is a certain amount of adversity one inevitably faces due to existing in a world that is not necessarily meant for you. If you are lucky, you get exposure to strategies and treatments or skills that help you navigate the world in a less distressing manner. For me, I was fortunate enough to have access to therapy when I was a preteen that completely did a 180 on where I was. I went from my family thinking that I would never be able to live independently or do anything on my own to being able to go back into a regular high school in a general education setting. So with the right tools and the right therapy, I found that I was lucky enough to have that opportunity to be able to learn what I needed to help me navigate the world. Absolutely. And I think that all of us benefit from extra support at times on how to be able to establish skills that are going to help us to be able to be a better community contributor, better and maybe our jobs, our relationships. And it is that unique perspective of, you know, autism has very clear kind of differences that, you know, how you're processing specific events. Everybody might do it differently, but if there are differences that exist. So you talked about, you know, treatment supports, but I would imagine is that no matter what you were doing, there's a principle that needed to be applied. And that would be that idea of neurodiversity affirming principles applied with all of that, whether it's education, treatment. What does that neurodiversity affirming principle mean to you? Because I think that definition sometimes gets lost over time. So I think one of the most important in sense of neurodiversity affirming is this idea that, you know, a lot of previous treatments aim to control behavior or force compliance. And that's what I would say is non neurodiversity affirming. Instead, what I consider neurodiversity affirming is trauma informed, incorporating strengths and interests of the child into or the adult into the care that's provided, focusing on building strong relationships. And then also focusing on the least amount of effort to get the child where or the adult where they need to be, meaning we don't want to automatically refer to very invasive things. We want to try the most like the minimum amount of change to help promote their well being. And that is what I view neurodiversity affirming care in addition to educating the child on autism and ADHD so that when they're an adult, they can advocate for themselves appropriately. Absolutely. And I mean, to that first point is that every single individual who identifies autistic is extremely different. It's not like, hey, here's a stamp, here's a diagnosis. And now you are the same as every single other person in this room. I mean, everybody's unique. Everybody has different things that they want to work on and different barriers that exist that the society has created that, you know, it's hard to be able to navigate, which you probably want to develop new skills for. And I think that what you were alluding to was the fact that treatment needs to be individualized as well, is that every treatment decision is that you're not taking it out of a curriculum or out of a standard book. Instead, you're looking at, you know, what does this individual want? What is it that they respond to? What is it that's motivating to them to be a part of it instead of forcing them into treatment? How do I navigate it so that they're a part of their community as much as possible during that treatment process? And when I think about it, that's kind of the four things that I feel like for me hit home in decision making. And are there other components that you'd say that, you know, you need to be evaluating if you are a part of anybody's support team or a part of their team that's helping them to be able to do whatever it is that they want to do in life that they should be looking at? I mean, are there other pieces that I'm missing? I would say some other key factors of neurodiversity affirming care would be respect for sensory needs and incorporating those sensory needs into any of the care. And always valuing consent always and encouraging communication through what they are already good at as well. Absolutely. And I think a lot of this comes from misconceptions. I think historically it was somebody needed to be fixed versus we need to understand how that person's experiencing the world around them and then help them to navigate ways to be able to make that a better experience for themselves, which I think that whether you're neurodivergent or not, we're always doing that. We're always looking at, you know, how can I make this a better experience? What can I do that's slightly different? I'm not doing a wholesale change of who I am. What am I modifying to be able to make it so that I am able to have a better life? And I think that is important. What are other misconceptions that you feel like, you know, exist that are affecting autistics right now? Well, what I want people to understand is that autism is a way of processing the world sensory, social and cognitive wise that has strengths and support needs. When we shift from fixing to supporting, I find that people thrive. Examples of what improves is their mental health, their self-esteem, their ability to authentically connect. Essentially, my goal is to help people become more themselves, not less autistic. And I would imagine this, this bleeds all the way from childhood to adulthood. What are you seeing kind of even as somebody is, I'm going to look at these transitional periods, but as somebody is entering into the workforce, because that's, I mean, we all want to contribute to what's going on around us and work is a big piece of that. Is there something that employers need to be looking at? Is there something that they need to educate themselves on so that they can benefit from having a diverse workforce? I think when it comes to people who run their own businesses and their companies, each of them are going to have their own opinions and ways that they want to run things. And sometimes that can be a barrier. What I do find is that businesses that incorporate neurodiversity training or acceptance training and also focus on methods of performance and efficiency are the companies that succeed more than the ones who don't use those services or types of training in their employee training. And I mean, from that same context is that some of the best experiences are when somebody is thinking with somebody outside of the box and they're being creative and they're thinking, how can I make this so that not only is it benefiting them, but it's benefiting everybody in this organization, in this company at the same time, because I am getting the best version of that individual. On that creativity, on that, I guess, authenticity component is that, I mean, you've done work in the arts to be able to build some of that up. And I think that it's a great skill for all of us to develop is to think a little bit differently and to pull out pieces of ourselves through some of these components. But how has that played a role for you, I guess, in resilience and inclusion as utilizing some of these other outlets that exist out there? I think when we view creativity and how it can help, I think whatever brings somebody joy, it can fill their cups, so to speak, to spend time doing whatever that is. For me, with my creative endeavors, it gives me sensory joy and emotional grounding. It's a way to communicate beyond words, and it helps build community and helps normalize neurodivergent expression. I think one thing that people should keep in mind is that today we live in a world where being able to get a hold of someone is easier than ever, but the way that we communicate actually creates more isolation. When we only have ourselves or certain things that don't involve other people, I think community with people that you get along with and work well with helps build a sense of support that helps people thrive. And I think wherever that community is found for an individual is essential in helping them feel connected. And I think that goes doubly for somebody's social-emotional well-being, is that idea of being in an environment where you are able and feel confident to express yourself, to share your ideas, and you don't feel like you're being judged through that process. And as much as I would want every community to be like that, it doesn't exist, so you need to go out and make sure that those are a part of your life, because I think that's where happiness and joy comes from. I think that's even expressing sadness or expressing some of those feelings that we identify as being negative feelings, I think that that brings about authenticity. I think it brings about the ability for somebody to really know who they are and freedom of expressing that. So I love the fact that you do promote that, that you do talk about those issues, because even if we're trying to be able to help support children and you want to be a part of their world is that you need to be seeking out those environments where they can be their best self and they can feel like whatever they're doing is respected. And that's hard to do. Are there environments or are there communities that you would recommend to families as they're starting through this process that maybe would bring about a more sense of self for their children or their adolescents? I think that first you start with what they're interested in or what the individual is interested in. If they like dancing, maybe you find other peers that like the same things you do. Where you enroll in a class or get books on whatever that topic it is. I think it starts with understanding the strengths and the interests and then building off of that. And when I look at how I experience life, when I have a shared experience that I could have with somebody, it enables me to open up in so many other ways just because I immediately have something I can connect around. So I would imagine is that say I have a child that is really interested in video games and I'm having them play a video game with somebody else who has that same interest. The conversation they hover around video games the entire time, but the fact that it's a shared experience, the fact that other things will trickle into those conversations and the willingness to be able to put one's guard down, those are immeasurable benefits. And I think that we have to realize that instead of saying, "Well, you perseverate over video games. I can't be doing this." It's, "How do I make this part of somebody's life so that they can really actually use as a tool rather than something that's a barrier?" So I didn't mention this to our guests, I mean to our audience, but you've done a TED talk. Is that correct? Yes. What was the focus of that? Focus was utilizing autism and technology and sharing my lived experience as well. With that lived experience with autism and technology, are there nuggets that I should be pulling from this that maybe I might not have been picking up on my own that technology, what role it might be playing? Well, the TED talk that I gave was 10 years ago, and a lot of the language and the ideas suggestion society has progressed a lot since then. For example, instead of saying, "Ask burgers, we say autism spectrum disorder." I think something that I, in terms of autism and technology, is using technology to help them effectively communicate more. So the use of AAC being more widely accessible is one of my main concerns right now. A lot of the families and people that I work with that desperately need AAC can't afford it because it's expensive. And really thinking about technology transfer, yes, we have the technology, but how do we actually get it to the people who need it the most? That is something that I think is important, and we need to give people the tools to be able to communicate more effectively. 100%. I mean, even if we do get those tools to somebody, one of my biggest pet peeves is when we compartmentalize it and only allow them to use those tools in specific times of day, and whether that is this is used during school, this is used during treatment, instead of realizing that I don't leave my voice box in different places as I travel throughout the day, and then I'm left without one, it's the same thing exists with an AAC device is that if it's not something that is a part of this person's life their entire day, then what is it serving? I mean, you're telling them that they have no way to communicate for portions of their day and who would want that? I mean, it doesn't even make sense. So you just mentioned that was 10 years ago. What are your upcoming projects now? And I mean, what are the things that you're most excited about? Because I feel like we're in an ever-changing society and we can always get better. For sure. Well, I'm currently in the process of launching my own private practice here in Santa Fe, where I work more directly with families. Currently, the problem that I'm seeing is that parents just need more direct support from people with adequate training. And my hope is that I'll be able to do that with my new private practice. The other thing I'm working on is I'm directing and wrote my first kind of musical show in Santa Fe, and it's based off of the music of the Andrew Sisters, and that's premiering next month. And that's just a passion project. I'm really happy to be working with a really excellent collaborative theater group called Tri-M here in Santa Fe to help put on, and they've given me the chance to put something, a creative vision that's been in my head for a long time into real life. So I'm very excited for that. I'll be starting, finishing up my coursework for my PhD next year, and hopefully going to my dissertation process. I'm very interested in elaborating on sort of the concentration camps that were in France. I know nobody likes to talk about the Holocaust, and it's not a fun topic to talk about, but I'm pretty sure that what I'll be doing is investigating the sub-camps of the bigger concentration camps, and learning more about the stories and the history in place, and making it so it's more centralized so people can access that sort of resource. And then beyond that, I have random conferences I'm speaking at. Yeah, that's pretty much it. There's no shortage of things that you're involved in, and I don't know how you keep up all that energy, because it sounds like that would be exhausting to have all that, but every piece of that sounds exciting, and it's something that I would imagine is keeping you energized and excited about what the field has and what you're able to do personally. Your clients, of course, are going to benefit from the advice that you're giving, but I'd love for you to tell our listeners or to leave them with a note or a nugget about embracing neurodiversity and fostering innovation and what that means and how we could potentially make sure that that's a part of everybody's life. I would say, growing up, that people saw my behavior before they saw my needs. And I think it's important for people to look more holistically at an individual beyond maybe whatever lens they've been taught to see, and understanding that autism is a way of processing the world. In addition, I think that we learn more when we learn about how other people's brains work and honoring and that individuality that people have. Mind should be individualized, there is no one package fits all, and also understanding that community takes effort to build. It's not just going to come to you without any effort. So when we're talking about building community and safe spaces for people to thrive, that has to be created. That's not something that's inherently there. So just know that community and safe spaces, they take effort. And Alex, I think that if we're able to take any of those pieces of information and even make them one ounce better, is that our overall society is going to benefit from it. Not just how we're working with neurodiverse individuals, but how we're working with every single person we ever meet. And that's the funny thing that I've seen is that, you know, I feel like normalized interactions on how I should be engaging the entire world, I'm learning from the perspectives, I'm learning from the experience shared with me, similar to yours, from neurodiverse individuals who are willing to talk about it and to be able to share and educate us on how we could make everybody's life better. But thank you for giving us a little bit of time today and for being willing to share your knowledge and experience. Thank you so much. I only emphasize that. Differences are not deficits. And when we support the way someone's brain works, they flourish. And it's important to lean into the strings on our autonomy and stay curious about the person in front of you. And I want to thank you for the opportunity to be able to share that perspective. It's my pleasure. Thank you for listening to Autism Weekly. We hope you tune back in next week to learn more about autism in the real world. Autism Weekly is now found on all the major listening apps, including Apple Podcasts, Stitcher, Spotify, Amazon Music, and more. Subscribe to be notified when we post a new podcast. Autism Weekly is produced by ABS Kids. ABS Kids is proud to provide diagnostic assessments and ABA therapy to children with developmental delays like autism spectrum disorder. You can learn more about ABS Kids and the Autism Weekly podcast by visiting abskids.com. Thanks for tuning in. See you again next week.