Interview between Speaker 1 (Meg) and Speaker 2 (Sam Brandsen), Speaker 3 (Janelle Fenwick), and Speaker 4 (Jenna Meehan)
Episode 49: How to Change the System: An OT, SLP, And Physicist’s Story
[Introductory note]
Hey! It’s Meg, and I have something really exciting to tell you. A few months ago, when I first spoke with Kelly Mahler, she suggested we work together to do something really big to totally disrupt the OT and SLP fields, launching us even further into neurodiversity-affirming practice. And I was really into that idea because I know that this is truly aligned with the therapist that most of us wanted to be when we started our journeys into our fields. So, Learn, Play, Thrive is hosting a continuing education summit — one for OT’s, one for SLP’s. We have a really impressive, impactful, and neurodiverse panel of speakers for both summits. Between the two summits, there’re going to be talks on the neurodiversity paradigm, interoception, energy regulation, strengths-based goal writing, AAC, working with kids who learn language through scripting, disability, justice and race, emergent literacy, both in terms of writing development and reading comprehension, and so much more. If you want the exact right place to start or continue your journey into neurodiversity-affirming practice, this is the summit for you. It will be registered for CEU’s with both ASHA and AOTA, and will provide so many opportunities for you to connect with each other and with the speakers in live Question & Answer sessions because I want you to truly feel the support of your community in this transformative process. So, come get your CEU’s, build your skills and confidence, meet your people, and totally transform your work. The SLP Summit is in October of 2022 and the OT Summit is in January of 2023. Check out the details at learnplay thrive.com/summit.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 49 with Sam Brandsen, Janelle Fenwick, and Jenna Meehan. This episode is the story of how an autistic physicist, an autistic occupational therapist, and a neurotypical speech language pathologist came together to try and break down the barriers to truly authentic inclusion for autistic kids in Durham, North Carolina. Together, Sam, Janelle, and Jenna run All Neuro Types where they host a neurodiverse inclusive playgroup. They have a really cool summer camp that starts this summer and they have so many more projects. In this episode, we talk about the barriers that Sam, Janelle, and Jenna identified for autistic kids to be really included in affirming ways in school and in playgroups. And then, they describe what they built to address these barriers, and how all of us can do the work to dismantle ableism around us, in our workplaces, and in our own communities.
So, I’ll tell you about these three folks. Sam Brandsen is autistic and is a researcher at Duke, studying machine learning and quantum information theory. But Sam’s real passion is trying to change the healthcare and educational systems to be more neurodiversity-affirming. Sam also loves hanging out with his wonderful autistic child. Janelle is an SLP, who, as you’ll hear, is super into Dr. Ross Greene’s philosophy that all children do well when they have the supports and resources to do so, and that this goes for adults too. Janelle runs a private practice in Durham called Express Yourself, North Carolina and she’s committed to listening to autistic voices and providing neurodiversity-affirming supports for autistic kids. And Jenna is an autistic and ADHD occupational therapist, and the parent to an autistic kid. She also runs a private practice in Durham, North Carolina called Be Me Occupational Therapy. I found this conversation so exciting, so practical, and also really inspiring to point us towards the work that we can be doing in our jobs and in our communities. But, before we dive into this episode, I want to add a quick note on the concept of disability justice. And this is based on a really helpful conversation I had with one of our listeners, Shouba Balabaer.
In this episode you’ll hear Sam mention disability justice and Jenna talks briefly about white supremacy. Both of these topics really are inextricably related and deserve more time and energy that they get in this episode. We genuinely can’t talk about disability justice without centering the struggles of BIPOC and queer folks. Here’s what Shouba Balabaer had to said:
“A thing that feels important, to me, about DJ is that it acknowledges that freedom isn’t going to come from the outside, and it’s not going to come from systems. Disabled people – like BIPOC and Queer people – have been doing their own mutual care work for all of history. And Disabled BIPOC Queer people are marginalized across all identities so truly work with each other to support each other. AND by knowing that supporting the liberation work that disabled BIPOC queer people are already doing will actually lead to the liberation of everyone…”
There’s a lot to unpack here and I do want to re-center disability justice in the conversation. So in the next episode we’re planning to re-publish episode 3 of the podcast with Lydia X. Z. Brown. So listen and learn from the extremely practical and inspiring experiences of Sam, Janelle, & Jenna, and then join us later this month to dive deer into some of the deeper underlying concepts with Lydia. Here’s the interview:
Hello, Sam, Janelle, and Jenna! Welcome to the podcast.
Jenna:
Thanks so much for having us.
Meg:
Yeah, it’s such a pleasure to talk to you all. So, let’s start with your stories. I just want to dive right in. Can you each tell me a little bit about who you are, what work you’re doing, and how you got here? Let’s start with you, Jenna.
Jenna:
Yeah, so my name’s Jenna Meehan. I am an occupational therapist. I’ve been an OT for about 12 years. And I started looking into and reading about neurodiversity about five years ago, and that was actually the time that my youngest child was diagnosed as autistic, when they were 18 months. So, when they were diagnosed, I really kind of quickly did a deep dive into the autistic community and really listened, read, and heard a lot from autistic adults. And soon started questioning my own neurodivergence. And I guess maybe a year into — I think, that’s how it feels, I don’t know how long it was — but feeling like I started recognizing and so many things started making sense. So, I realized I was autistic. And during that time, then it became COVID and having a lot of space to explore and identify and figure out how I want to show up as a therapist and as a community member, as a parent, and feeling like having my own practice, which is called Be Me Occupational Therapy, felt like the way that felt right for me to kind of figure it out and grow. And then, as I continued doing that, feeling like wanting to work as an OT but doing a lot of more community-based systemic work, felt like another huge passion and something that made sense to kind of connect all the work of neurodiversity inclusion.
Meg:
I feel like that story probably really resonates with a lot of people. I’ve spoken with a few different psychologists recently who said they see a lot of moms being diagnosed as autistic after their kids are diagnosed as autistic. And it’s impressive how quickly you turn to the autistic community and sort of pivoted from, I imagine, from what you had seen in OT practice.
Jenna:
Yeah. So, OT practice from also just the experience of going through the early intervention system. I was currently working in early intervention in that time as an OT, and then having my own child in early intervention and going through the process of going to the medical system and getting a diagnosis and having a not at all what I would consider or feel to be an affirmative. It was very much the message of, “Okay, these are the deficits your child has, you have this much amount of time to figure this out and fix it,” and feeling that, just felt like this horrible feeling that I realized is what the path was. That I was in the system of that is what my families that I was working with and supporting were also going through. And when I started exploring neurodiversity, and autistic perspective of, oh, this doesn’t have to feel this way. And I didn’t have to feel this way. And there is something different — that you can feel different, and it’s not this is the way that you have to just follow the system that doesn’t feel good.
Meg:
That is such an important reminder. We talk about how neurotypicals are limited in our perspective-taking skills for understanding autistic people, but here that includes our ability to take the perspective of a parent. How are we talking about their child, and how is this impacting their life and their relationship with the child? I see you nodding, Sam. Can you tell us a little bit about your story?
Sam:
Yeah. So, my background is actually somewhat unrelated to autism that my PhD is in physics, my current research in quantum information theory, so it’s an unrelated field. But I’m autistic myself, and I think the way that I really got involved in autism advocacy, similar to Jenna, is that I have a four-year-old child who is also autistic and who has higher support needs. And I found that the amount of barriers that he faces, especially having higher support needs, is so much. And it’s I think I had in some ways normalized the stigma for myself; it’s just kind of all I knew throughout my life. But then watching, you know, my child who I love very much and who I see is very wonderful and very precious go through that stigma, and in some ways much more intensely, was something that just seemed absolutely not correct. I wanted him to have a life where he would feel, you know, appreciated and celebrated, that I think all parents want for their children.
And so, I think that was kind of where I started researching more about autism and neurodiversity, to hopefully become a better parent for my child. And then, in the process, I think what really prompted me to dedicate a lot of time to it was also coming across the issue of use of electric shock and just general mistreatment of autistic people or disabled people in group homes. So, in particular, the Judge Rotenberg Center, but overall, I think there’s this lack of autonomy and lack of like, disregard for people’s well-being and safety. And it just seemed like such a critical and urgent issue that, yeah, I guess I really became involved in advocacy and haven’t really looked back since then. So, I started by doing some like neurodiversity education for different groups and departments at Duke. And currently, yeah, I came across Jenna and Janelle. And that’s sort of how we started the project that we’re here for today, creating spaces for autistic children and families and adults.
Meg:
Yeah, so many parallels there. And such a lovely story of how you sort of are demanding something different and better for your child and for other kids. I appreciate you bringing up the Judge Rotenberg Center and electroshock that’s really coming to a peak, hopefully, right now. I know there’s some protests being organized around it. And if folks aren’t familiar with it, I just want to encourage them to look it up and learn about the way that ABA uses electroshock therapy as a behavioral tool/punishment/torture device for autistic people. And also, they’re threatening legal action against Neuroclastic for talking about it right now. So, we’re gonna keep talking about it. And we’re going to talk louder and louder. So, thank you for bringing that up too, Sam. What about you, Janelle, what’s your story?
Janelle:
So, I’m Janelle and I’m a pediatric SLP. And I also own my own private practice in the Durham Chapel Hill area, Express Yourself N.C., I’ve been working for about 12 years now. And I consider myself to be really lucky because I’ve always worked in private practice. And so, I started working right out of grad school in a very supportive private practice that gave me a lot of flexibility in terms of how I was treating my clients and how I was working, which I know is not always the experience that therapists have had, especially working in larger clinics or school systems. So, I started my own practice in 2018 when I’d really started specializing in working with children who were kind of quote-unquote ‘behavioral challenges’, I’d always provided inclusion-based primarily pre-school-based services. And when I would be in these preschool classrooms, I would very quickly realize that there was a need for support for children that the school systems or the teachers had considered to be like a behavioral issue, or to be causing behavioral challenges in their classroom. So, these would be the children who would be like physically communicating in the classroom, they might have a harder time with transitions, or with really structured activities, or they might be experiencing these large shifts in emotion or energy regulation. So, generally speaking, because these children were seen as being quote-unquote ‘disruptive’ or ‘problematic’, they would be effectively punished, at least from the child’s perspective, whether or not the adults knew that that was the way their actions were being perceived or not. And so, they’d be removed from play centers, or like sent to the office, or actually just frankly, kicked out of pre-school, which I felt like was just a really traumatic experience for these really tiny people and little mini humans.
So, I started kind of picking up a few of these kids on my caseload, because I was like, well, I can help like, I can help them understand how to use some more verbal problem solving, how to like navigate some of these social exchanges. And so, I was trying to find resources that I felt like fit my feelings and perspective in terms of what was going on. Like, I was getting all this information that these children were having these really hard days and having these big meltdowns because like, it was their choice. People were acting like they were consciously choosing to have really hard days, day in and day out of their pre-school life. And I was adamant that that was — there’s no way. No one is choosing that life for themselves. That just sounds really miserable.
So, I stumbled upon Dr. Greene’s work on collaborative and proactive solutions and building empathy and shared perspective-taking and really working to understand the point of view of the child. And so, people started figuring out that I worked with these quote-unquote ‘challenging children’ in a different way. And so, I started getting more and more referrals, which then naturally kind of led me into also neurodivergent spaces, because these kids would go on to get a variety of different diagnoses. And so, once I started realizing I was having like a higher caseload of autistic or ADHD children, I realized that I also needed to spend more time in those spaces learning from neurodivergent adults. While I definitely don’t think that I am the voice for the children that I am serving, I’m working with them to build their own advocacy and narrative telling skills. So, I need to understand their perspective to help guide them and share that viewpoint with others.
And I think that there’s a general lack of listening, too, for like younger children. So, if a four-year-old is trying to tell you their perspective about why they engaged physically with another child, most adults are not going to truly spend all of the time to really understand that perspective. They’re going to focus in on, “You know you’re not supposed to hit. We don’t hit. Hitting hurts. We use our words.” Well, the child knows that, usually, always almost. And so, there’s often not that true time and energy and focus being spent on actually understanding and empathizing and considering that child’s perspective. And so, that was where I found myself spending more and more time in neurodivergent spaces and listening to adults and helping to form that narrative that I can then help other young children understand for themselves. And so, that was then how I ended up kind of rebranding my whole practice in 2020, to emphasize that I am solely focusing on neurodiversity-affirming speech language therapy and practice. If you’re looking for something else, I am just kind of not the person for you.
And so, I happen to get involved with Sam and Jenna on All Neuro Types, because in December of 2021, Sam had reached out and said, hey, you know, I’m going to be collaborating with a few other neurodiversity-affirming therapists, and we’re looking to kind of put together potential neurodiversity-affirming spaces and/or pre-schools, and basically systems and environments, and would you be interested in joining? And I was like, Oh, my gosh, yes. Like, I would love to be a part of that. And I’m honored to be involved in this type of process, being quote-unquote ‘neurotypical’ myself, I was like, I would love to be part of this space. And I’m honored that like, I’m perceived as being respectful or knowledgeable enough to be able to share this space, and help create these spaces together. So, we all, the three of us, met on that first meeting. And then it just kind of grew from there in terms of all the advocacy and all of the ideas and all the different systems that we’re hopefully trying to put in place.
Meg:
I will definitely link to Dr. Ross Greene’s work in the show notes. His work really resonates with a lot of people who are drawn towards neurodiversity-affirming practices. And I hear this thread in what you’re saying, Janelle, that you started, spending more time taking the perspective of the kids and assuming generously that they were doing the best that they can and they needed people to learn from them about them, learn about their needs, potentially help them build skills, change the context, whatever it is, as opposed to whatever it is that we’re normally doing. And I think this is what you all are saying — you saw something that didn’t sit right with your values; you wanted to do something differently. That’s where a lot of therapists who listen to the podcast start, but the next step can be really hard to see. And you all have taken it over, and over, and over. And you come from different experiences. Parent, autistic person, therapist, researcher. Sam, when we spoke before, you identified the common theme in the work y’all are doing is increasing accessibility in a broad sense, minimizing barriers and excuses that are often given for why inclusion isn’t possible for autistic kids. Can you give us some of the specific barriers that you’ve identified? We’ll start with you, Sam.
Sam:
Yeah, definitely. Yes, I guess we are working on kind of a few different initiatives, that as you mentioned, I think, all of them stem from identifying supports that are currently lacking that aren’t available freely, or that require a lot of resources to access. So, for example, in our case, when our child started speech therapy and occupational therapy, we found a lot of the approaches that were used were compliance-based, and we were able to find some really good speech therapists and occupational therapists for him. But it’s not covered by insurance. So, that’s something that won’t necessarily be accessible for everyone. Likewise, with school systems, I think having a child with higher support needs, we weren’t able to find any private school in the area, even those that, you know, I think are open to certain forms of neurodiversity, who would be willing to consider him because they would deem his support needs too high. And then, what we would have been left with were schools that used more of a complaints-based approach.
And we’ve been able to sort of homeschool him because we have flexible jobs. I think like, I’m a researcher, I can work from home, and I have a great supervisor. But that’s not something that’s going to be available for everyone. And so, I think a lot of what we’ve been trying to do is to take those experiences and turn them into things that are more accessible and that can kind of help answer the question of like, well, if not ABA, then what? So, we are trying to create, sort of weekend groups that are free that any family can join, that are just meant to be more of a celebratory space, like kind of an alternative to more traditional groups that are focused on mourning having an autistic child, or summer camp. The goal there is to provide an alternative to schools that do use more of a compliance-based approach.
And then, we’re also trying to develop mental health resources. Because I think, again, that’s kind of an area where it took me a while to find a therapist who is neurodiversity-affirming. And I think I’m very lucky that I’ve had insurance that covers that and everything. But that’s not something that everyone has access to. So, I think, in a way, it’s been a little bit self-referencing a lot. That is, you know, come across something in my own life or my child’s life where we see a barrier and we think, okay, how can we try and fix that more generally? And likewise, you know, with the research we’ve been doing, a lot of research historically is focused on how do we cure autism? How do we prevent it? How can we normalize autistic children? And there hasn’t been as much funding for some of the projects that were, or that I’ve been looking into more, which is related to mental health in autistic adults, or more respectful forms of delivering autism diagnoses that aren’t pathology-based.
Meg:
Yeah, that’s a lot. So, you’re saying there’s, in theory, inclusion. There’s maybe schools that will take autistic kids with higher support needs, but they’re going to likely have a negative impact on that child’s mental health, they’re going to be compliance-based, behavioral. And then there are these other options, maybe, that relies so heavily on privilege to access them. So, is this really inclusion? You also said that you’ve identified there’s not enough neurodiversity-affirming therapists. Those numbers are growing. Not fast enough, but this really resonates with the core values of so many therapists. That the first time we hear it, so many people just say, “Oh, yeah, I want to do that. I want to do that instead of what I’ve been doing. How can I learn?”
But even more, that change seems to be happening even more slowly for diagnostics. So, we have this pathologizing deficits-based process of autism diagnoses and telling parents and children that their child is autistic. And then, you also identified this research barrier. So many compliance-based therapies or therapies that are based on teaching masking and hiding autistic traits, like ABA are deemed research-based when we’re researching outcomes that are harmful to children. And so, then you’re finding barriers, right, of well, neurodiversity-affirming practices maybe aren’t evidence-based because the research hasn’t been done. And I was just want to say, we start with our code of ethics. That comes before evidence-based practice. And if something isn’t aligned with our code of ethics, we don’t do it. And then what are we left with? We’re left with what we’re learning from the autistic community and the research on authenticity and mental health. So, I love that you’re highlighting those things for us. What are you seeing, Janelle?
Janelle:
So, I’m seeing a lot of the same barriers that Sam has already mentioned. And I feel like a lot of my experience has been in private pre-schools and private schools in general, being a private therapist. And I think a lot of what we’re seeing in terms of lack of supports and access in those settings is honestly just a lack of understanding or incorrect, potentially old education that the teachers that have been provided over the years and through their trainings. I think we’ll often hear, especially at the younger age, a child might be in a pre-school before there’s any sort of diagnoses and teachers are kind of getting to know them and working with them to figure out what works well for a child, and what doesn’t work well for them. But then it’s almost like as soon as there is a diagnostic label, they’re like, “Oh, well, I’m not special education. I don’t know how to handle this anymore. I don’t know how to best support this child,” anytime there’s any sort of challenge or pushback.
And I think my perspective usually is, well, you have gotten to know the child, you’ve gotten this rapport with them, you’re working to understand them, you’re this supportive and stable person for them. That in and of itself is more helpful than any special education system or strategy or prop that you’re bringing in to support a child. And so, I think a lot of times, there’s like almost this disservice that some of the general education teachers are giving to themselves in terms of if we actually are spending the time to empathize with our children, to truly believe that everyone is working from their current best stability based on whatever their skills and the resources that they have available to them, if that’s truly what we believe about people and like kind of humanity in general and we work from that point, then often we can get a lot done, even if we don’t have the quote-unquote ‘special training’ that we apparently think some children need.
And so, I’ve been, I feel like a lot of what can be helpful in those situations is just changing some of that perspective and the narrative. And like, how Sam and you were alluding to, changing the whole conversation about how we’re viewing neurodivergence in general. Like, it’s not this deficits-based model that we’re going from. We should really be looking at it from a strengths-based and a supports-based, like what types of supports does this child need to succeed. And honestly, those are supports that — I have not found an instance where those supports cannot be applied in different situations, and in all these different scenarios. And so, I think that initial like almost reflexive reaction of ‘I don’t know how to handle those supports, I don’t know how to give what that child needs’, it’s almost like a fear basis that’s driving a lot of this; therefore, I then can’t serve your child because I’m afraid I can’t give them what they need and give them access to the best education. Versus the viewpoint of okay, what do I need? What supports do I need? What education do I need to support me? But again, that also comes down to funding and time and access.
And, you know, it’s also a big ask to put on teachers and other staff. I feel like teachers and daycare workers were overworked even before COVID. And obviously, now in COVID, it’s like a whole ‘nother ballgame and a whole ‘nother situation. I listened, actually, to your podcast interview with Corrie Price and Evolve Learning Centre. And the whole time I was listening to it, I was like, oh, my gosh, this is like an amazing place. It’s a school that’s actually putting in the time and the resources to support their staff. And because their staff are supported, they feel like they have the ability to then support their students. And so, I really feel like a lot of the barriers are there’s no support for the people who have to support the people who need the support, which may not have made a lot of sense, but. [Laughs]
Meg:
No, it does. And it’s so fundamental. I see the parallel here and what we hear from parents like you about the lesson you get about parenting your autistic child from the medical model. “Hurry, hurry, hurry, get lots of therapies, meet goals. Therapies, therapies, strategies. Go, go, go, go go,” as opposed to, “Your kid is okay. Your kid is who they are. Get to know them, accept them, cultivate their positive identity.” It’s like we’re giving parents permission to shut out this messaging and be the parent that they would be if we had never pathologized autism, or approaching that, ideally. And you’re saying, can we just do the same for parents? Can we take off — I mean, for teachers — can we take off some of these pressures, and go back to the foundation of it is worth your time to connect with a child, to learn about them, learn their perspective, identify supports, and put them into place. It sounds really basic when you say it, but we’re so far from that. We are really very far from that. Jenna, what barriers have you seen in addition to this or related to these? And can you also start to talk to us about some of the work y’all are doing together to dismantle these barriers?
Jenna:
Yeah, definitely. So, yeah, I agree with so much of what Sam and Janelle just said. And I, as Janelle was speaking about the pre-school, I think I’ve been thinking about our just society, and how all of our systems are rooted in supporting white supremacy and ableism. And so, when you’re working in those systems, and you’re doing your best to try to say, “But this person has autonomy, and this person can talk about what feels good to them,” but that isn’t what the system is supporting. If you’re trying to advocate for a system that’s trying to push back, it just feels like you’re fighting against this bigger wheel that’s not supporting it. So, thinking that, as Sam was talking about that there’s these little pockets of small spaces that you’re able to access if you have the privilege and ability, but I think feeling like there needs to be much greater impact of our foundational systems that are needing to support this power hierarchy.
And I think, how autistic experience and social participation — personally, for me, but I think in a bigger autistic sense — also feels like those power hierarchies. It feels counterintuitive. And I think, if familiar with that, one of the neurodivergent love languages, thinking about support swapping and thinking about how naturally that hierarchies just don’t feel natural in autistic culture when it feels like you’re being supported. So, one thing that we’ve just recently started, which feels really exciting, is our neurodiversity-affirmative childcare provider list. And Sam has actually made so many of our amazing resources. So, how this program is working is that there’s three free videos available online that anyone is able to go through through the website. And then, once you watch the videos, you can take short quizzes, I think they’re 10 questions each for each one. And then, once you take the quiz, and I believe scored 80%, get eight or more correct, you can pay a $25 fee to be listed on this registry. And then, hopefully, it will allow people to start building in neurodiversity-affirmative skills, and then have availability for people that need neurodiversity-affirmative care providers a registry that they can access without having to find someone and pay for a specialized training. This is hopefully a space where people that can kind of start and have access to resources that are financially accessible.
Meg:
This is great. I’ll link to your directory in the show notes as well. I love how you’re using it as an opportunity to provide some training to providers and to provide a list to families. Because we get asked all the time, “How can I find an affirming provider in my area?” And it’s easier in some areas than others, but that is so important. Some of the other barriers that y’all mentioned were inclusion in pre-schools and schools. Can you tell me about the work that y’all are doing around inclusion?
Janelle:
Sure. So, I’m really excited about this, because this was probably one of the first projects that I think we all kind of started snowballing on. And in our first meeting, we started with this huge idea of, well, we could create this truly inclusive school space which could not only serve children with all different neurotypes, but could also serve as a training center and an opportunity to show and model for other teachers and therapists and professionals a way that this can be done in a neurodiversity-affirming way, because I think that’s often what we hear. Like, people want to be neurodiversity-affirming, but yet, they don’t know how to actually implement it within their practice, or they’ve been doing things so long in one way that just change is hard. And we understand that. And so, Jenna and Sam and I were all, you know, super excited about this. And we’re like, okay, but we can’t start with this whole school. Like, that would be amazing. But that’s like a little bit big to start with.
And so, we kept trying to figure out what might be hopefully semi-manageable to start with. And so, we ended up settling on a half-day, week-long summer camp that we are running June 20th to the 24th. I’m not sure when this airs, but that’s when our camp will be running. And it is a half day camp from 8am to 12pm. And it will be run by myself and Jenna and Sam and a few wonderful volunteers that we’re working with. And the whole premise is this is just a camp where we are taking all individuals with all levels of support needs. And we are just literally providing support so they can be children, and engage, and have hopefully a really fun camp experience. And we’re trying to center it around children who otherwise may not have access to a camp experience. And so, throughout this process, we’re like, okay, in order to be able to meet all of those needs, what are we going to need to do ourselves? And so, obviously three of us cannot do this on our own. We’re like, okay, we need help. We don’t have any money. We’re like brand new. So, we’re like, so we need people who are interested in volunteering in this. And so, then we’re like, okay, we have volunteers, we need them. But like, at the same time, we’re really particular about how children are going to be interacted with and how that dynamic is going to be. That’s important. That’s like the core of what we’re doing and what we’re promoting. So, we’re like, okay, how can we support our volunteers so they can support and interact with the children in the way they want to?
So, the week before our camp runs, we’re going to be doing a week-long training seminar, given by myself, and Sam, and RJ, and Jenna, on basically how we’re going to be interacting with all of these different individuals and building, hopefully, this model, of supports where we’re emphasizing respectfully engaging with others, respectfully responding to quote-unquote ‘behaviors’, understanding different modes of communication. What do you do with the child who’s a gestalt language learner and processor? How does that impact their play? What does gestalt cognition have to do with play, and how can that sometimes be misinterpreted as being a behavioral problem if they’re not competing or positively involved in a routine? So, our goal is to kind of weave all of these different elements together so, hopefully, everyone’s getting this overall perspective on why children are interacting in different ways from a place of understanding, not from a place of punishment.
And we’re also aiming to provide this model of support for the staff and our volunteers that we have, and also facilitating a place where it feels safe to be trying new things and making mistakes as like, grown-ups. Because this is new, right? It’s new for myself, and Sam, and Jenna to be leading this sort of thing. And it’s also new for a lot of our volunteers. A lot of them are really interested in neurodiversity-affirming services, but they’re struggling to kind of find their people within their workplace. And so, we’re hoping to be able to serve as a model in all those different areas, and then hopefully be able to scale this eventually later, but kind of starting out small. Those are kind of some of our goals.
Meg:
I love this so much. I mean, you’re hitting hard at the double empathy problem here, right, that your neurotypical counsellors — I’m assuming they’re not all neurotypical, obviously, but some of them are — are not going to be able to without efforts take the perspective of their autistic clients. And even we know autistic adults are unlearning ableism as y’all talk about. And so, you’re going to be explicit and train them to do better perspective-taking and to provide more affirming support to your autistic campers. I love that so much. And I love how you’re also hitting on this need that you mentioned before of providing real support to our adults who are helping care for autistic kids, and trying to do it in an affirming way. I’m excited to see how it goes. And I do hope you scale it because we need it so much. Are there any of your projects or initiatives, Sam, that you want to add to this list of what y’all are doing to dismantle some of these barriers?
Sam:
Yeah, definitely. This one is maybe a little bit different than the summer camp, and the play groups, and trainings we’ve been working on. But we are also trying to develop some plain language mental health resources for autistic adults. I find that there’s not a lot in that area. And in particular, one thing that we’re hoping to release soon is sort of a checklist of behaviors for people with intellectual developmental disabilities or anyone who’s neurodivergent to identify whether they’re being treated well or respectfully in a relationship. There is, I think, like a really serious problem where people with intellectual developmental disabilities are often victims or survivors of abuse. And that’s been quite under recognized. So, we wanted to come up with something that would be just like a tool that’s adjusted for this purpose. And that also includes sort of the specific ways that abuse can happen towards people with intellectual and developmental disabilities. So, for example, isolating someone might not only be isolating someone from their friends and family, but it could be isolating them from their special interest. Or, you know, gaslighting someone could include using their disability against them. I think these things aren’t often included on the standard checklist, so we just kind of wanted to make one that’s building on what’s been done previously, but then also extending it so that it’s used for this purpose.
Meg:
That is so interesting, and so important, and honestly very easy to miss if someone isn’t making it explicit. Like, when you said those things, they felt very obvious, but if I were screening an adult with an intellectual disability for abuse, I’m not sure I could have come up with that. I love that y’all are working on that tool. I’ll link to how to find all of you in the show notes so people can access these things as they become available. So, y’all are doing a lot of projects. You are obviously people who see something that isn’t aligned with your values or isn’t aligned with the world that you want to live in, and you figure out what is within your skill set and capacity to change, and then you take steps to try to change it on a small and then increasingly large scale. Can you situate all of this within the disability justice framework for us?
Sam:
Yeah, sure. I think for me, it has kind of a straightforward relationship with disability justice in that I think of disability justice as trying to, I guess, like a lot of things, but trying to make a more safe world for autistic, neurodivergent, disabled people. Trying to create a world where all different ways of being are celebrated. And I think a lot of the goal in us trying to create these resources is to help make spaces where families, autistic children, neurodivergent children, et cetera, can feel safer, and can feel more comfortable, and just can be treated with like the respect and appreciation that any child deserves, and that they deserve. And I think a lot of our education also is, for example, like, we want people to have a better understanding of neurodiversity. And I think that a lot of times, even if someone identifies as neurotypical and non-disabled, there’s probably some area of their communication where at some point in time, they’ve been told that it’s too odd, or that they need to change it, or that they’re not productive enough, or that they’re not able enough in some regard.
And so, I think that our goal is to create resources that help people be more compassionate towards themselves, and also make sure that that compassion is not just extended towards themselves, but also towards people who are most marginalized or who are multiply-marginalized. And I do think that, you know, we probably won’t be able to change the whole world on our own, although that would be kinda cool if we could. But I think that if more of these resources were created more broadly, like if families with kids with higher support needs didn’t have to worry about whether they’d be able to find a quality childcare provider for their child, I think that would eliminate a lot of the fear and stress and just like sleep deprivation that parents go through, and would free up more energy to develop more appreciation and better bonds with their child and a more neurodiversity-affirming approach. And I think that it’s important for children as well, to me, like that they deserve a place to feel safe and appreciated. They don’t have to just be kicked out of schools or just like barely tolerated at school, that schools are lucky to have them that they have something to offer as well. So, I think that’s kind of how I picture it tying in with disability justice.
Meg:
Absolutely. Let’s just keep centering that, that kids deserve to feel accepted and welcomed and included and like they are okay. Like, they are good and enough. It’s amazing to me that this isn’t already central in all of our work, is someone’s sense of self, and their positive identity, and their mental health, and their well-being. And I appreciate y’all continually bringing it back to intersectionality. I know, Sam, you were talking about the stress of, “Can I find a school, can I afford the school,” and, Jenna, you situated all of this for us within the context of white supremacy and capitalism. And it’s inextricably linked to all of these power dynamics and injustices in our world. And this is hard. I hear from a lot of therapists who are frustrated because they want to work differently but they’re in a setting that makes it really hard. And as you all know, doing individual work but not being able to change systems of oppression and exclusion can feel really frustrating and limiting. So, what can individual professionals do to address systemic issues? I’m thinking here, like the OT or the SLP working in a school or a community setting. What would you say, Jenna, to that therapist?
Jenna:
Yeah, I think it’s, it’s really hard. And I think the biggest thing is to continue to unpack all of your either internalized ableism, all the things that continue to impact your ability, because I think sometimes it feels that the system is so big, but there are things that you can do and I think balancing between how much can you give of yourself to fight this system and what are ways that you can do that might be impactful to change. I think, the one thing that feels manageable to me, too, that I can continue to do without feeling like I’m gonna burn out really fast is continuing to question when I’m in systems and talking to people that are in positions of power, when I have the privilege in that space, to be able to question what they’re doing to change the system. And if they’re not, continuing to ask the questions and explain what they can do. So, I know when I graduated OT school, when I was a new therapist, I felt those power dynamics to be super strong. And as I look back then, I was heavily masking just to completely — understanding how all the systems were working was incredibly important for me to figure out how I was fitting myself into them. So then, as I started unpacking all of the things, realizing that that was contributing to the system, was a hard place for me to really kind of feel the weight of it all, and then kind of process what am I doing in this system? And how can I best use my energy in a way that’s going to support the people that I’m hoping and working to support?
Meg:
I appreciate that call to ask questions and challenge things, people, systems. It takes courage. And I think that comes more naturally to some people than others. But I will say it feels better than doing nothing. And it matters. I had an OT school professor who told me to get thicker skin. She was like, “You’re somebody who stands up to authority figures, and you’ll do it on behalf of other people. And that’s great. But if you’re gonna keep doing that, you’re gonna have to get thicker skin and not be so sensitive when you’re the one who bears the criticism or the backlash from it.” I didn’t enjoy that meeting. But I’ve been grateful for that feedback, because it’s come into play over, and over, and over again. Because if people are asking questions that are uncomfortable, that are disruptive, they’re gonna have to have courage and thick skin, and it matters, and we need to be doing it. That’s the people we want to be in this world. And then I appreciate, Jenna, you saying that we need to, from there, really evaluate what’s the best use of our energy. What setting should we be in? Are we just fighting a losing battle and burning ourselves out? Is there somewhere else we could be that we could make a greater impact? Janelle or Sam, is there anything y’all want to add for these folks who were like, “I’m just one person. What can I do?”
Janelle:
Sure. I’ve actually had a few SLPs in the area reach out to me and ask if I would be willing just to meet them for coffee, because they find me by looking for neurodiversity-affirming SLP, and I pop up. And I always say yes, because I know it can be a really lonely space to be in. And until I found Jenna and Sam, I was lucky to work with another OT as well before who we shared common viewpoints and goals on. But before that, it is a really lonely space to be in sometimes. You are constantly fighting against systems that are in place that you are trying to gently nudge people along to maybe consider that this may not be the best way to be responding to or handling some situations. But it can take a lot of time, a lot of energy, and a lot of resources to get even what feels like the smallest shifts in these huge systems that are currently in place, which is exhausting.
And I feel like for some people, there can be power in numbers and just having people that commiserate with you. That like, you know what, that meeting, or the way that this classroom, or the school system, or this overall societal structure is structured is really messed up. And we can kind of acknowledge that together so you’re not feeling like, you’re like this one lone person standing out here and you’re the only one screaming, “This is broken, and we need to fix it.” Like, there are others of us out there, we just might be a little bit more scattered. And I also think it’s important to keep in mind that there is power in even just the small changes that you are making. It may not be possible for a single therapist or a single teacher to change an entire school system. But we can create a safe space for the few people and the few children that we do see. We do have power and control over the way our therapy sessions are structured and how they’re run, and how we are teaching, and interacting, and responding to these students. And I feel like there’s a huge level of power in just letting these children know that they are seen by at least one person in their life and who they’re interacting with during that day.
Meg:
Sam, of everything we’ve talked about today, if people have one overarching takeaway, what do you hope that one key takeaway would be?
Sam:
Oh, that’s tough. I think probably what I would hope the takeaway is if they could just think about how disability justice is important to them, whoever they are, and I think sometimes where disability justice has been hindered is in its viewed as kind of an act of charity. Something that we do to be nice to disabled people, like will allow them into the classroom for their benefit. And from my perspective, disability justice really is something that benefits everyone, I think. Everyone is going to be benefit if they’re in an environment that is neurodiverse, where they’re surrounded by people with different neurotypes and not just other people who are neurotypical, if they’re neurotypical, for example, or other people who are non-disabled, or other people who have lower support needs. And that has to go for other forms of diversity as well, I think, you know, for only making spaces that are accessible to the most privileged autistic people. That’s not complete, either. So, I think, just maybe thinking to yourself, what the benefits of diversity are, how you can maybe work to support that in your life, how you can work to support or appreciate whatever neurodivergent traits you might have in yourself. I guess that’s kind of part of it, even though it’s maybe a very broad thing. But I think most people, if they think about those topics long enough, will come up with one concrete example in their life that maybe it’s a small thing to start with that they can go with to change.
Meg:
Absolutely. I love that. Jenna, tell us where we can find y’all online.
Jenna:
Oh, our beautiful website — thank you, Janelle — is called allneurotypes.com. And we have our resources, our YouTube channel that has so many beautiful resources that mostly Sam has created. And hopefully we’ll have more resources available soon.
Meg:
Thank you all so much. I will link to everything you’re doing in the show notes. And I know that we’ll all be excited to see what comes next. Thank you.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
