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DIY, Mutual Aid, and Human-Centered Learning for Neurodivergent and Disabled People w/ Stimpunks
372 Plays13 days ago
“We are a community affair. We’re Autistic, ADHD, OCD, PTSD, Tourettes, schizophrenic, bipolar, apraxic, dyslexic, dyspraxic, dyscalculic, non-speaking, and more. We’ve collectively experienced rare diseases, organ transplants, various cancers, many surgeries and therapies, and lots of ableism and SpEd. We’ve experienced #MedicalAbleism, #MedicalMisogyny, #MedicalRacism, #MedicalTrauma, and #MedicalGaslighting. We understand chronic pain, chronic illness, and the #NEISvoid “No End In Sight Void”. We know what it’s like to be disabled and different in our systems. We know what it is like to live with barriers and what it means to not fit in and have to forge our own community. Disabled and neurodivergent people are always edge cases, and edge cases are stress cases. We can help you design for the edges, because we live at the edges. We are the canaries. We are “the fish that must fight the current to swim upstream.“
And that’s just the opening statement on Stimpunks.org.
Stimpunks has been among HRP’s closest allies over the years, and I am so grateful to be joined by an amazing cross section of Stimpunks today -- Ryan Boren, Chelsea Adams, Norah Hobbs, and Helen Edgar, who also runs Autistic Realms – to speak to their roll your own, DIY, Mutual Aid and Human-Centered Learning for Neurodivergent and Disabled People.
Chelsea had to step away during recording so you’ll hear her voice just in the first half. This episode was a long time coming, and I hope you enjoy it. You can connect with Stimpunks and find all of the resources mentioned in this episode at Stimpunks.org.
Mentioned in this episode:
Recommended
Transcript
Realizing Neurodivergence
00:00:00
Speaker
I came to know my own neurodivergence, my own ah autistic ways by seeing others try to crush the autistic ways of being in my kids. And I felt that crush. I felt that soul restriction.
00:00:15
Speaker
I felt it viscerally. And it was like, I was like, this is fundamentally misguided. This is not compatible. This is wrong.
Episode Introduction
00:00:31
Speaker
Hello and welcome to episode 172 of the Human Restoration Project podcast. My name is Nick Covington. Before we get started, I wanted to let you know that this episode is brought to you by our supporters, three of whom are Simeon Frang, Leah Kelly, and Brandon Peters.
00:00:47
Speaker
Thank you all so much for your ongoing support.
Community Challenges and Ableism
00:00:51
Speaker
We are a community affair. We're autistic, ADHD, OCD, PTSD, Tourette's, schizophrenic, bipolar, apraxic, dyslexic, dyspraxic, dyscalculic, non-speaking, and more.
00:01:07
Speaker
We've collectively experienced rare diseases, organ transplants, various cancers, many surgeries and therapies, and lots of ableism and SPED. We've experienced medical ableism, medical misogyny, medical racism, medical trauma, and medical gaslighting.
00:01:25
Speaker
We understand chronic pain, chronic illness, and the no-end-in-sight void. We know what it's like to be disabled and different in our systems. We know what it is like to live with barriers and what it means to not fit in and have to forge our own community.
00:01:43
Speaker
Disabled and neurodivergent people are always edge cases, and edge cases are stress cases. We can help you design for the edges because we live at the edges.
00:01:54
Speaker
We are the canaries. We are the fish that must fight the current to swim upstream.
Stimpunks and Human Restoration Project Collaboration
00:02:01
Speaker
And that's just the opening statement on Stimpunks.org. Stimpunks has been among HRP's closest allies over the years, and I'm so grateful to be joined by an amazing cross-section of Stimpunks today.
00:02:14
Speaker
Ryan Boren, Chelsea Adams, Nora Hobbs, and Helen Edgar, who also runs Autistic Realms, to speak to their roll-your-own, DIY, mutual aid, and human-centered learning for neurodivergent and disabled people.
00:02:29
Speaker
Chelsea had to step away during recording, so you'll hear her voice just in the first half. But this episode was such a long time coming, and I really hope you enjoy it. You can connect with Stimpunks and find all of their resources mentioned in this episode at stimpunks.org.
Stimpunks Team Introductions
00:02:46
Speaker
I'm Ryan Boren. I'm co-founder and co-creative director at Stimpunks. a commander from Dripping Springs, Texas, near Austin, a gathering place for the Stimpawa people who are here before us.
00:02:59
Speaker
Do a lot of the website work at Stimpunks along with with Helen and the rest of her team contributing. And it's where i I love to be and where I live is on the website. So and check it out.
00:03:16
Speaker
My name is Chelsea Adams and I am the executive director at Stempunks Foundation. i am located in Morrison, Colorado, which is just outside the Denver area.
00:03:28
Speaker
i moved here two years ago with my wife and pup and have absolutely loved living in the mountains. I'm Nora Hobbs. I'm the program director for Stempunks and I'm located in Driftwood, Texas, just about half an hour away from Ryan.
00:03:44
Speaker
Hi, I'm Helen Edgar. I'm a volunteer with Stimpunks. I think I joined the team maybe officially around around a year ago, but I've i've been around Stimpunks for the past two and a half years-ish, I think, probably. And I um i work as a co-creative director, collating lots of resources and inputting into the the website with everybody. So it's an epic team to be involved with. I feel really honoured to be a part of it all. It's it's a really exciting space to be in.
Origins and Purpose of Stimpunks
00:04:15
Speaker
What was it about your life experiences that both led you to form Stimpunks, if you were part of that original crew, or to find Stimpunks? How did you all become collaborators in this effort together?
00:04:31
Speaker
I can start this story. We were born from behaviorism. Our family and others experienced a ton of behaviorism as we navigated our children through education and healthcare.
00:04:47
Speaker
And when your child is diagnosed as neurodivergent, everything you're told is steeped in behaviorism. David Gardner- The deficit deficit in ideology, the pathology paradigm in the medical model.
00:05:00
Speaker
Everything you hear is is from that. we were born from that framing to counter that framing. Something that comes up and when you're applying for grants, folks will often ask, what was your moment of obligation?
00:05:14
Speaker
When did you feel the call? And STEMPUNKS was created to forge the way for educational inclusion and to give our community the means to survive and to thrive. Because we as disabled neurodivergent people had to roll our own education because even the all means all of public education failed to include us failed to include us spectacularly because of the the behaviorism the deficit ideology, the pathology paradigm, none of these are good frames for seeing human actuality, whether it be neurodivergent people or or the full spectrum of neurodiversity of humanity.
00:05:56
Speaker
I think our public systems, especially education and healthcare, kind of completely fail to see us, to understand us, to hear us, to respect our voice and respect to our actual ways of being.
00:06:10
Speaker
And ah beyond that, we also realize we need to create own care systems because we realize that the only people who care enough about us to work consistently for our liberation, excuse me, are us.
00:06:24
Speaker
We're the only people. willing to do that work. And it was a recognition that responsibility for the survival of entitl and of entire communities lies with us.
00:06:36
Speaker
And we can't but can't forsake that obligation. And so that was our moment of obligation where we realized we had to
Personal Journeys to Stimpunks
00:06:45
Speaker
do this thing. We had to create stempunks.
00:06:48
Speaker
And we started gathering fellow neurodivergent disabled people to help us build this thing. And you've got three of three of the main builders here with me today.
00:07:01
Speaker
And if any of y'all would like to to add to this this origin story, please feel free. Yeah, I'll go ahead and chime in since I've been there since the get-go.
00:07:13
Speaker
So I actually met Ryan and Ina doing home renovation work on their house. um So that's how I met them. And then on the weekends, I would actually do respite care.
00:07:25
Speaker
for their son Ronan. And so that's kind of how we met each other. And i actually got injured um when I was doing the renovation work. So I couldn't really go back to it.
00:07:36
Speaker
And that's where I kind of started working with Ryan a lot. And we would just like hole up in his little casita and just like, do a ton of research. And I don't know, he turned to me one day and was like, so do you want to be a part of this? And I was like, I actually really do. um So I've just had a lot of self-discovery on this whole journey. I myself am ADHD.
00:07:58
Speaker
um So I've just learned a lot about myself and about the community, and I'm really proud to be a part of it. I started almost two years ago. It'll be two years in September.
00:08:10
Speaker
um I saw they were looking for some help on a local Dripping Springs Facebook group um that Ryan's wife, Ina, had posted and responded, and they were really prompt and friendly in getting back to me. And I just thought it'd be really interesting to join the team and work from home and do something better with my life than just direct care and I was in like a lot of healthcare care positions and I wanted to try something new.
00:08:38
Speaker
My background was I'm late identified autistic myself with two neurodivergent children in the UK. I was previously a primary school teacher working in special needs settings for those with profound and multiple learning disabilities.
00:08:53
Speaker
This is a bit of a lot of long backstory here. I basically had to resign from my work, ah my classroom work um of 20 years and working in early years in primary schools to look after my own children. And then over lockdown, I set up my own website and platform of Autistic Realms purely as a kind of space for blogging and sharing information um and advocating for neuroaffirming people.
00:09:20
Speaker
approach to support families and children access ah and having kind of experiencing barriers to education and experiencing burnout. Through my own personal burnout, I've been online prolifically because it helps me kind of recover and engage and with with other people online. I found it really kind of rejuvenating and um inspiring meeting at other people.
00:09:47
Speaker
And I kept crossing paths with Stimpunks in various online spaces through discords and think it was Twitter at the time and Facebook and various other ah the spaces. And um I work at crisscrossing paths all over the place. And so yeah, I think I reached out to Ryan initially saying what amazing website they've got. And I was basically living in their website most days, just kind of exploring it all. It was like a great big rabbit warren, and like going down into kind of Alice in Wonderland's place.
Inclusive Education Initiatives
00:10:17
Speaker
adventures really just constantly discovering new things yeah and then we all just started Ryan invited me to Stimpunks and we all started kind of working together and sharing our stories and information things have evolved since so it's yeah bit really nice to be able to be connected with everybody And it sounds like that's definitely a common theme because I think Human Restoration Project found Stimpunks in much the same way as through Ryan's prolificness that all that time and investment on the website um really pays off as far as um finding new people and connections and
00:10:54
Speaker
um you know Back in 2022, when we were first launching our virtual conference to restore humanity, I think is when that partnership really picked up. um And Ryan in the and Chelsea, I think you joined us for this as well.
00:11:07
Speaker
But the ah virtual learning track that we hosted on Discord for DIY at the edges, surviving the bipartisanship of behaviorism by rolling our own, i think was just such a hit and a great way to inaugurate a vision of inclusive, inclusive,
00:11:23
Speaker
education conferences that we're now in the fourth iteration of, ah which I never would have imagined was possible. And I think Stimpunk's support and the alignment and mutual collaboration of our visions is is one of those reasons. So I'm just, I'm i'm so grateful for that. And i'm I love to hear that um this is how Ryan gets, ah this is how he gets people involved by just being himself and building those rabbit warrens.
00:11:53
Speaker
Yeah, I think people naturally kind of come together steampunk kind of evolves and through ah all my connections with Autistic Belms as well. More and more people are just kind of connecting with what's being shared there and the community just keeps growing then. It just keeps expanding. and There's a kind of shared...
00:12:12
Speaker
shared experiences of a of lots of neurodivergent and disabled people coming together and kind of getting each other unlike any other space really like I guess and it's it's really validating being in the community and like this.
00:12:27
Speaker
To own this too, I think this podcast format in a sense is also just sort of exclusive, you know, to people who can and prefer to communicate verbally, orally, um who have the capacity, you know, to do that, to know that like there's a whole other group of people who are represented in this conversation just because they have different means of communication. I think that's one of the things that the virtual conference that flipped model or using Discord is so powerful for because it's so much more inclusive of um different communication styles, um different ah ah abilities, accommodations for a bunch of different um ranges of ah participation.
00:13:11
Speaker
Thinking of, you know, the issues and experiences that led you all to form Stimpunks and to get involved there to now look ahead to 2025. How has that work grown and changed over time? I mean, what are some of the most pressing issues you work on today? Are they different than the ones that you had, you know, when you first got going on this?
Critique of Behaviorism
00:13:33
Speaker
I'll kick things off again. Behaviorism is a kind of through line through all of our work because as I mentioned earlier, we're kind of born from behaviorism and behaviorism has just exploded in ed tech and ah big tech as well.
00:13:49
Speaker
and Behaviorism and operant conditioning are everywhere. And it's just exploded more and more. And the current administration in the U.S. has made it so that our and we have this little tagline. We say we live in a time of mass behaviorism and unvarnished eugenics.
00:14:09
Speaker
And I first felt that 15 years ago when I was navigating my neurodivergent kids and our neurodivergent family. By the way, all of us here from Stempunks are multiply neurodivergent. And those of us that have kids have multiply neurodivergent kids.
00:14:25
Speaker
And navigating these systems, we had to just constantly face against behaviorism, ableism, and eugenics. And those forces are all the more powerful right now.
00:14:38
Speaker
For anyone who follows the news, don't want to bring that too much into this discussion. It's impossible not to, right? Because it's so in your face. Ryan, could you provide an example? Because I know when you say behaviorism and eugenics, I think like I can think of examples of what that looks like in classroom practice and in politics and in society. Are there some concrete examples that for people who aren't familiar with those labels might connect with?
00:15:06
Speaker
Yeah, for one, the first the first time um met behaviorism in our current systems, was with public sticker charts for my for my kids in preschool and and in kindergarten and first grade and the lower grades, the early years.
00:15:25
Speaker
and Sticker charts. And since my kids were the multiply neurodivergent, can't sit still, um can't provide nor normative ways of being, they were on the chart.
00:15:39
Speaker
they were bad on the chart And going in every day knowing that you're ah an orange or whatever it was, i just, that really rubbed me the wrong way as a parent.
00:15:51
Speaker
And then where we started getting every therapy that you're suggested is behaviorist to its core, most especially applied behavior analysis, ABA. And that's what we subjected our kids to and the early years of their lives before we knew better.
00:16:09
Speaker
But as we figured out what was being done to our kids, we realized how very against our own natures it was. And that was part of my path to getting my autism diagnosis.
00:16:23
Speaker
As part of getting your kids diagnosed, they do, you know, um family history. And in my family, there's this born men archetype. That's pretty much a list of autism traits.
00:16:36
Speaker
And, uh, I came to know my own neurodivergence, my own ah autistic ways by seeing by seeing others try to crush the autistic ways of being in my kids.
00:16:51
Speaker
And I felt that crush. I felt that soul restriction. I felt it viscerally. And it was like I was like, this is fundamentally misguided.
00:17:03
Speaker
This is not compatible. This is wrong. And that led me to to considering the question that should be obvious at some point.
00:17:17
Speaker
but do What do autistic adults think? So I went to autistic adults, and they have a whole different view of the universe.
Embracing Neurodiversity Paradigm
00:17:25
Speaker
They're in the neurodiversity paradigm, not the pathology paradigm.
00:17:29
Speaker
They're in the biopsychosocial model, not the medical model. They have different framing and different language for everything. And I found it to be so much more real to my own lived experience, so much more authentic, so much more progressive and informed and human-centered.
00:17:50
Speaker
And that experience with behaviorism, these concrete examples of sticker charts and then applied behavior analysis, which, by the way, ABA has history and the same bad actors has history with the same bad actors that formed conversion therapy.
00:18:11
Speaker
And it just recently came out that Ole Ivar Lovas, I'm probably harming that name, but he's the founder of ABA and conversion therapy, gay and autistic conversion therapy.
00:18:24
Speaker
And he recently was outed as having Nazi ties back during his his youth, the same as Hans Asperger. So we have two two popular figures who helped define racism.
00:18:37
Speaker
um Autism and the interventions that that are used against us have Nazi eugenicist backgrounds. That bears taking pause if you're in the behaviorism industry.
00:18:50
Speaker
If you're a teacher with behaviorism running your classroom, you should take pause. You should go see what the people who are most subjected to these therapies are saying about it because they're calling it abuse.
00:19:07
Speaker
They're calling it fundamentally misguided. they're They're calling it incompatible with human dignity and human rights. And I personally agree. a parent who subjected my child to that, I agree. As someone who just feels the chafing of that worldview upon my soul, upon my being, I'm 100% in the neurodiversity paradigm as a way of shifting away from this.
00:19:36
Speaker
I think what you were saying there, Ryan, about um for me personally, finding out about the neurodiversity paradigm has been instrumental in my own personal life and and my professional life.
00:19:49
Speaker
My own teaching background was rooted in behaviorism. um i did my teacher training like in the early 2000s and it's what we did. It's is how how most teacher training is is in England.
00:20:03
Speaker
you know, behavior charts, sticker charts, using PECs as a form of communication for for children when when needed, and using rewards and withholding things there's as motivators for children. and And I've had to do a lot of unlearning over over the past few years. um And it's been, yeah, it's a huge huge amount of unlearning and then relearning.
00:20:30
Speaker
And most of that has been done through connecting with the community in various different spaces, um listening to ah other people. And I've learned probably more in the past few years and unlearned more than than I've ever kind of managed in my own teacher training. it's It's been invaluable and it's inspired all of my work. And i think that's what's...
Neurodivergent Community and Projects
00:20:53
Speaker
um Yeah, the basis of Stimpux is neuroaffirming community and and believing in autistic people's voices, disabled, neurodivergent people's voices and other marginalized communities.
00:21:08
Speaker
Everybody's voice needs to be heard and there's space for those voices to be heard. um So I've only... kind of I wasn't with Stimpunks at the very, very beginning beginning when they were first established.
00:21:19
Speaker
ah But I think the main things that people that draw people towards Stimpunks and general kind of neuroaffirming spaces like Human Restoration Projects and all these other spaces and why I set of autistic realms is...
00:21:35
Speaker
that we've been unheard for so long. um As parents, we're often not not believed and about the needs of our own children. As late-identified autistic people, and there's a ton of internalised ableism often, which which comes with kind of discovering that you may be autistic yourself after maybe your children have been identified. That seems to be a really common theme that people experience.
00:22:03
Speaker
um and then readdressing all of that internalized ableism and my professional life as a teacher and my own parenting techniques and strategies from when my children were toddlers and rethinking how things could be done um in in different ways um it's been really i've learned all of that basically through community i'm an avid reader i read prolifically and tons of academic research and but more importantly I think it's the it's community voices and learning from from others and from other families that are experiencing the same thing it's it can be really I said really validating and empowering to feel that you're with people that understand you and that's led to
00:22:51
Speaker
lots of projects. i I keep creating projects with lots of different people in lots of different spaces, and but it specifically led to the Neuroqueer Learning Spaces project that um we've done at Stimpunks, opening up and thinking how learning can be more accessible for everybody.
00:23:11
Speaker
Neuroqueer Learning Space is... It's providing space for everybody, not just autistic and neurodivergent people. And that's been really fun to explore. So we might maybe talk about things like that later.
00:23:24
Speaker
Helen, similar to how Ryan spoke about experiencing as a parent, this sticker chart and the sticker shock that came with the use of that as a behaviorist intervention, speaking to your experience decades as a educator in the UK, are there certain things that, you know, you looked back on now that are, that were part of that system and say like, oh, with the lens you have today, recognizing, well, this is clearly in that behaviorist paradigm as well, or,
00:23:54
Speaker
Yeah, I think it's just so ingrained in teacher training. it like It wasn't even something that I questioned for many years because it's just what we did. And we we thought we were doing it. And obviously, I worked in early years. I thought of myself as a quite a compassionate teacher and and and parents.
00:24:10
Speaker
um We tried to make um all of those kind of games and activities work. fun. ah I think positive behaviour support strategies, PBS, um as it's kind of known over here in England, is is really sugar-coated.
00:24:26
Speaker
And I think a lot of professionals and teachers don't realise the harm it's doing um for for young people, not letting them be their authentic selves and essentially saying that they're not good enough as an autistic person as they are and that they need to make eye contact. They need to sit in a certain way and do good sitting, good listening. They need to turn take in a certain way play with their toys in a certain way and just based on your normative expectations and how things should be done um and there's a lot of pressure on teachers to keep that up as class you know as teachers you're um you know you're observed as a teacher within a kind of behaviorist framework as well and yeah i don't think people understand the harm of it it takes a lot of unlearning to realize
00:25:18
Speaker
actually the harm that behaviours can cause to people's wellbeing and mental health over the long term. As I said, a lot of these kind of social social stories and things, they can be packaged really nicely and they all look really fun and engaging and for young young people to do. And I think teachers can think that they're doing and they are doing their best job at the time.
00:25:41
Speaker
Unless you know better, you can't kind of do better.
Positive Changes in Education
00:25:44
Speaker
Nora, I'd love to give you a shot, too, to come back to that original question, you know, asking follow-ups of Ryan's experiences and Helen's.
00:25:53
Speaker
Considering those issues and experiences that, you know, led you to Stimpunks, how has that work changed? What are the pressing issues that you work on today? I have not had the same experiences as Ryan and Helen. um With my neurodivergent kids, they do go to public school. I feel they are taken care of pretty well. So I've had kind of the opposite experience and i'm pretty proud of our school district for the changes that they have made.
00:26:22
Speaker
So it's unfortunate that, you know, cause Ryan's kids would be in the same school district. So, but his are significantly older. So I think, um In the last, you know, 10, 15 years, they've made some changes, a lot of changes. and And that has not been our experience. So I can't speak for every district, but I think ours is doing better or at least the schools that we've experienced are.
00:26:46
Speaker
Is there an example of something, you know, that's changed or in what areas aren't you seeing those same sort of behaviorist things that Ryan's kids experienced? However many, you know, dozen years earlier.
00:26:58
Speaker
A few examples that come to mind, like they're not allowed to do sticker charts or any kind of, you know, you don't get an orange, like you don't you don't get a color for your behavior. They don't do that kind of thing anymore.
00:27:09
Speaker
The only thing I can think of is like they they try to keep them quiet in the cafeteria. So sometimes they'll give, you know, if the whole lunchroom is being loud, they'll like hold up a card to remind them that they're being loud. But it's more of like, this is your volume level. You're at a 10. Let's try to bring it to a four.
00:27:25
Speaker
So I've i've never... experience them giving stickers or singling out like one child for their behavior or or noise level. That's another example. ah they They have Amazon wishlist now, and the teachers are pretty good about when when you go in, they have caves, campfires, and watering holes set up to where my daughter's allowed to leave her desk and sit under a teepee with some string lights if she wants, or she can work in a corner by the window with others.
00:27:53
Speaker
um So generally, the teachers don't have the overhead lighting on with the fluorescence. They have either covers over it or they just have lamps So it's very, i feel like the classrooms feel more cozy than they probably used to.
00:28:08
Speaker
and like my daughter wears her loops all day to to keep herself regulated and and calm, but she can still hear the teacher and um she's allowed to do that. Like no one questions if she needs like headphones or loops or She can have thinking putty in her purse to fidget with if she needs to, and no one takes their toys from them, and you know they're allowed to have that.
00:28:34
Speaker
So that's just a few examples, but I feel like they are doing better or at least trying to do better. I haven't noticed anything that was alarming on my end in that sense.
00:28:45
Speaker
Wow. Yeah, that that caves, campfires and watering holes paradigm is something that I'm only familiar with through Stimpunk. So it sounds like um that advocacy work, at least locally, has um taken root in some form, even though they may not be super aware of it or if it's intentional, um the outcome there is positive, it sounds like.
00:29:06
Speaker
I wonder, we had mentioned behaviorism as probably the anchor that we're that the systems are sort of tied to, these education systems, ah healthcare systems, all these other things.
Key Neurodiversity Concepts
00:29:18
Speaker
um I know Ryan mentioned ABA as well, but what are some of the other big ideas that people should know to understand stimpunks and the work? And I'm glad to have Ryan expand on caves, campfires, and watering holes as well, in case people don't know.
00:29:33
Speaker
Such a cool concept. On our education pathway on our website, which is at stempunks.org slash pathway slash education, we ah summarize three takeaways that we want people to come away with after they they they browse our our education pathway.
00:29:52
Speaker
And that is the neurodiversity paradigm, monotropism, and the double empathy problem. And those three things... I think are fundamental for teachers to understand right now.
00:30:06
Speaker
And um I'm going to look up a quote from Fergus Murray that says it very well. um Let me look. I'm going to load up our education pathway right now.
00:30:20
Speaker
All right. Here are three things we'd like you to take away from this page. This is on our Our Shoes page, which is like a, it's simpunks.org slash r-shoes. It talks about what it's like to navigate education and healthcare in our shoes.
00:30:35
Speaker
And at the end of this, we have this section called Autistics on Autism, in which we talk about the three things we really want people to take away. Fergus has this to say, neurodiversity describes the place of autistic people and others in society and the human population at large.
00:30:52
Speaker
The double empathy problem describes how empathy breaks down between people with different perspectives. Monotropism describes autistic processing from the inside in the context of the model of the mind as a system of interests.
00:31:04
Speaker
I think that's jam-packed full of good learning that you can jump off into all kinds of stuff from. And that's why i think these three these three paradigms, these three insights are so fundamental to understanding understanding I think they're fundamental to being a teacher because neurodiversity is a biological fact and always has been, even though we don't treat it treated as such.
00:31:32
Speaker
But if we want to if we want to serve human actuality as we actually exist, our authentic ways of being, we must understand neurodiversity, monotropism, and the double empathy problem.
00:31:46
Speaker
I'll take a moment to expand on each of those three real quick because they are so important. And this is also ah quote from Fergus Murray's piece, Autistic on Autism.
00:31:58
Speaker
And Fergus says, once autistic people had the means to start finding each other, the autistic community collective worked out the details of the idea that soon became known as neurodiversity. Autism is a healthy part of the variability of humans.
00:32:13
Speaker
Disability depends on the environment. Autistic thriving is worth pursuing. Most autistic people don't want to be cured. Listen to autistic people's insights on autism. Those five bullet points, I think, are a good call to action for understanding neurodiversity and human actuality.
00:32:34
Speaker
And I'm moving on to monotropism. Monotropism is a tendency towards intense interest, which may be lifelong or fleeting, but either way, they tend to be all-consuming in the moment.
00:32:44
Speaker
To look at it another way, monotropic people tend to have fewer interest aroused at any given time. They tend to be aroused more strongly, pulling in more of our attention, leaving relatively few processing resources for other things.
00:32:58
Speaker
Monotropic people tend to enter attention tunnels, which can be sources of great joy when engaging with things we are passionate about. or unpleasant rumination when we get stuck on things that we that have gone wrong.
00:33:10
Speaker
Entering and exiting attention tunnels takes time and energy, a big part of the reason for autistic inertia and what is described as as executive dysfunction. Being wrenched out of an attention tunnel can be acutely distressing.
00:33:24
Speaker
And I think that's a fine summation, two-paragraph summation of monotropism and attention tunnels. and how dysregulating it can be when we can't exist in a happy flow state, a happy attention tunnel.
00:33:39
Speaker
Now moving on to the double empathy problem. Here's this quote. Empathy is not magic. Recognizing the emotions of other people requires an understanding of the cues that tell you how they're feeling and the internal experiences behind them.
00:33:54
Speaker
If those cues match up with what you're used to seeing, and especially if cues and feelings match up with what you would do and feel, empathy is much more likely to be effective and accurate. It follows that people with very different experiences and ways of expressing themselves are likely to have difficulty empathizing with each other.
00:34:12
Speaker
This is perhaps the conclusion that anyone could have reached with a bit of thought, and Jim Sinclair made a similar observation back in 1988. But for whatever reason, autism researchers and psychiatrists seem to have ignored this glaring flaw in their conclusion that autistic people lack empathy for decades.
00:34:30
Speaker
Autistic scholar Damien Milton described this issue as the double empathy problem in 2012. Empathy goes in two directions, and non-autistic people regularly struggle to empathize with autistic people.
00:34:42
Speaker
and the decade In the decade after, a whole series of experiments clearly demonstrated this in action. End quote. And though those experience continue experiments continue today that show that autistic people relate to each other. They have a higher rapport with each other than they do with non-autistic people and vice versa.
00:35:04
Speaker
ah Different neurotypes, broadly speaking, have some different ways of being that are authentic and need to be recognized. And someone is...
00:35:19
Speaker
said that the double empathy problem effectively invalidates a huge amount of autism research. Any autism research that assumes that they that that it knows what people are are are thinking and feeling from the outside, this this the double empathy problem pretty much puts the nail in the coffin of those that research framing.
00:35:44
Speaker
Because the double empathy problem says that you're, you know, you're not getting it. And you're, you're blaming the double empathy problem on us, as opposed to recognizing that it is a double empathy problem. It's a two way street.
00:35:58
Speaker
So to summarize those three things, neurodiversity, monotropism, double empathy problem. Those are two things that we, so we spend a lot of time working on at Stemp Punks. We have our map of monotropic experiences that,
00:36:13
Speaker
the monotropism ways of being. And ah we've we've helped popularize the monotropism questionnaire, which has helped a lot of people understand themselves at a fundamental level.
00:36:29
Speaker
The monotropism questionnaire, you can just type that into a search engine and the top hits will be community community entries that are worth following. And they'll take you to this online self-scoring questionnaire where you can see how monotropic you are according to this questionnaire. This questionnaire is still being developed, so typical caveats.
00:36:51
Speaker
And it should be said that this questionnaire should not be used to invalidate identity in any way. It's touted as a, it's been called an autism test by autistic people, and it's not really what it is. It's not an autism test. We can't be so bold yet.
00:37:07
Speaker
You know, not everyone relates strongly to monotropism, even though they're autistic. So we don't want we don't want people to feel like they're being invalidated by this so-called autism test by autistic people.
00:37:20
Speaker
um That's not what we're billing it as. It's a monotropism questionnaire. It's a measure of how monotropic you are. And there's a lot of overlap with monotropism with autistic and ADHD and audio eight d but not everyone not everyone relates. I know some notable folks in our community um who just do not relate to monotropism.
00:37:42
Speaker
So we don't want it to be an invalidating thing. But we also want to recognize that it's probably one of our best ah best models for autism. We've gone through so many that were describing us from the outside in.
00:37:55
Speaker
Now we have one from the inside out, and it's just so much better. And the questions in the questionnaire are so much better. and And you can tell they're written by someone who understands what it's like to be yourself if you're monotropic.
Monotropism and Autism Understanding
00:38:12
Speaker
And I will leave it there. I've talking in a while. Yeah, for me personally, one of the biggest kind of reframing I've done is finding out about the theory of monotropism, which was a theory developed um by Diana Murray, Wynne Lawson and Mike Lesser um back in the 90s, and it formulated that um their paper in 2005.
00:38:35
Speaker
And the reframing of of autism and in a neuroaffirming way has just transformed every aspect of my life. I feel deeply connected to the theory of monotropism. I describe myself as um as a monotropic person.
00:38:50
Speaker
um The theory of monotropism runs through... um all all of my own work. um I think Ryan would agree that he's also a highly monotropic person and that's how Stimpunks is getting so much and work output as well. um Just a huge, huge info dump.
00:39:09
Speaker
and But being able to kind of reframe some of the things that were seen as deficits and in the past, such as um people seeing autistic people as having kind of restricted interests,
00:39:21
Speaker
um and repetitive movements um and reframing that as as autistic passions and and the better understanding the benefits of stimming and understanding your sensory system more and how your attentional resources are used in ah in a different way.
00:39:39
Speaker
If you're autistic or ADHD, it helps reframe everything. And when you understand that, I think you can and you can start looking at how You manage your how families work work together, and how classrooms are set up for autistic students in particular, um more interest-led learning, more time spent um for recovery and kind of re-engaging, lots more time to kind of move between attention tunnels.
00:40:10
Speaker
I could infodump about the monotropism all day, and but that that's been like instrumental for for myself, um definitely. If listeners just search for map of monotropism, for me, SimPunks was the first
Building Community through Love Languages
00:40:23
Speaker
thing that popped up. I don't know if that's just my algorithm or if you'll find it elsewhere, but that seems to be one of those, you know, big rocks and in y'all's work.
00:40:31
Speaker
So definitely, if if you're listening, feel free to check that out. Helen or Nora, did you want to speak on any of that? Or Helen, did you want to speak to Double Empathy? Yeah. Yeah, so I think obviously the understanding of exactly what neurodiversity is and embracing neurodiversity and the the the beauty of that of the differences between everybody, you know, not just autistic people, we're talking about all of human humankind.
00:40:56
Speaker
And as Ryan's mentioned, um I personally found the theory of monotropism to be very, very validating. and Understanding and realising concept of the double empathy has helped me understand a lot of the difficulties that I've experienced personally through my own life and also yeah as a professional and as as a parent.
00:41:17
Speaker
And I think it helps us. When we're in a community space, and a neurodivergent-led space or a disabled space with people that kind of have similar lived experience to yourself. So when we're talking about double empathy, we're talking about there being a difference between lived experiences. So that can be an autistic person and an unautistic person.
00:41:37
Speaker
and But obviously intersectionality comes into that. So we're talking about the intersectionality differences between people. maybe neurodivergent and race and age and gender, all of that comes into the double empathy problem and it all ah overlaps in in multiple ways.
00:41:54
Speaker
But what I found personally really valuable and what's drawn me towards Stimpunks and some other community spaces like Human Restoration Project as well is that understanding that we are all different and communicating in different ways.
00:42:10
Speaker
And there's almost... I think one of the most popular pages on Stimpungs is the five neurodivergent love languages, the love locutions. And that, for me, that ties everything that Ryan and Nora and Chelsea and yourself have kind of talked about so far, brings it brings it all together.
00:42:27
Speaker
So the five neurodivergent love locutions, I can briefly go over what those five. and Yeah, please. ah if Yeah. Yeah. So first of all, we've got um info dumping, and which is which is what I'm currently doing here, I guess, um which is something that ah loss of um you a people, they find when they're engaged with their passions that their communication becomes important.
00:42:54
Speaker
easier and when they're with maybe like-minded people sharing a topic. I generally don't do very many webinars. This is my very first ever podcast because I find talking online quite stressful normally and most nearly all all my work is is basically written but I I do enjoy also info dumping about one of my favorite subjects, which includes monotropism and neurodiversity as well.
00:43:22
Speaker
The other one of the five neurodivergent love locations is the benefits of understanding how neurodivergent people work and play differently in parallel play um and through things like and support swapping and and body doubling. um And I think as certainly, it's kind of multi-layered, but certainly as as a team, I found the way when I first met Nora and in Chelsea and Ryan, it The way they worked as a team was completely new to me. um It was really refreshing being able to work collaboratively on projects and the events.
00:44:05
Speaker
and to share work ideas kind of asynchronously through multiple different channels, like sometimes text-based base channels. Sometimes we've got a body doubling channel within our Discord as well, which is open for everybody to use, not just the team, it's this a community space as well.
00:44:23
Speaker
But being able to to work in in different ways like like that has been really and but refreshing and people to understand that everybody's got fluctuating energy needs.
Community Support Practices
00:44:34
Speaker
and and Some days you need more support than other the days. And sometimes, you know, you can work work together in different ways and it's been really beneficial.
00:44:43
Speaker
and And the other parts of the five neurodivergent kind of love languages is and the importance of understanding your sensory system, whether that's through stimming and deep pressure movements, you know, just ah ah learning to understand your sense of needs and supporting other people and and validating their own needs as well.
00:45:08
Speaker
um And then lastly, we're coming on to penguin pebbling, which is my personal... favorite aspects of this is kind of there's a ah well-known quote I think it's penguin pebbling is penguins when to show care for for each other they exchange pebbles between themselves and penguin pebbling is a way of showing people that you care about them. So it could be like you found a cool rock or a button or a leaf or a stick. um
00:45:42
Speaker
That's a quote from somebody, isn't it, Ryan? and I've forgotten who initially said that. Yeah, that's ah Brains and Spoons is the one who came up with. As far as I know, they're the originator Penguin Pebbling. And here's their here's their description.
00:45:56
Speaker
It's our way of saying, i thought about you today. i remember this thing about you. Here's something I want to share specifically with you. Send a little thinking of you, Pebble. It helps.
00:46:07
Speaker
yeah Yeah, I think it's just ah such a lovely concept. It's something that I've kind of embraced myself like through through my own work. And I see it a lot of the volunteer work that I do with Stimpings is kind of like passing Penguin Pebbles around to the communities as well, like little web pages, little nuggets of research, little infographics, sharing music and just...
00:46:31
Speaker
kind of yet tagging people all over social media, is as you know that I do, Nick. But if I something that I think might be relevant for somebody's work or projects or might be of interest with their own community, that's my kind of form of penguin pebbling as well. And it's nice to be able to share that with people.
00:46:50
Speaker
It's the best, honestly. It just is such a good little reminder um because, you know, in an Internet age where you're so flooded with notifications and emails and anything else to see, you know, from a collaborator ah to actually be tagged in something interesting and then bring that to the forefront your of your attention, you know, is is I think.
00:47:10
Speaker
Yeah, I love locution. I love that framing of it. Nora, I thought we'd definitely give you a ah shot, Nora, here. um What do you think is the the biggest idea that's drawn you to Stimpunks or that you've drawn from your work in this space?
Transparency and Mutual Aid
00:47:26
Speaker
There's not one in particular. One thing I really like is how Ryan is always um promoting transparency. Like most of our Discord is open to everyone. There's not really any secrets behind Stimpunks. Like we do have, you know, like a couple of channels that are for like, if we have to talk about like grantees or something to to make selections. But that was something new to me was was the idea that, you know, I i came from working in healthcare where everything's so locked down and you have to Change your password frequently and you can't get into this server. And but so Stimpunks is so opposite and and welcoming and encouraging in the sense that it's like if you want to pop into a meeting and see what we're doing, you totally can. Or, um you know, just sharing how we run our events or runs of show like he keeps most of even our weeks in review. He's very good about posting his interviews.
00:48:16
Speaker
You know, so people can see like what he worked on this week. So everything's pretty transparent and there's not like any hidden curtain or secret to it. And it can help guide other nonprofits and other groups to maybe lead better and run theirs better. So um that's one thing that I really like about Stimpunks.
00:48:36
Speaker
At the beginning, i had mentioned Stimpunks. I read the tagline Mutual Aid and Human Centered Learning for Neurodivergent and Disabled People. And Helen is mentioning that you work a lot in that mutual aid space. Do you want to speak to what that looks like for mutual aid and Stimpunks and your role in that?
00:48:54
Speaker
My role mostly is, you know, as the applications come in, we process them and read through them and put them in our pipeline. And then um each month we give out two mutual aid grants. They're $500 each.
00:49:09
Speaker
And we, Chelsea and I generally ah make our notes and read back through everyone's. um Just really reading through those applications and trying to put myself in their shoes and prioritize people who who truly need that grant.
00:49:25
Speaker
Is there an example, Nora, because I'm thinking of listeners who hear this and hear, you know, neurodivergence and disability mutual aid. I'll put a link so folks can can find that. Is there an example of somebody recently who Stimpunks gave that mutual aid to? That would be a good example.
00:49:45
Speaker
They do need to be in the United States. As of right now, we can't grant to other countries yet. Okay. They need to be 18 and up unless they have permission from a parent or guardian. And we can't pay for like tuition in particular for school, but we did have one grantee that needed money to travel for like a band trip for school.
00:50:04
Speaker
And so as long as, you know, his parents were fine with that, we were able to grant and help make that happen. um People under 18 can apply as long as they have parent permission to back them on that.
00:50:16
Speaker
They have to be able to eventually provide receipts for like creator grants and mutual aid just so we can kind of prove, you know, why we gave them the money. Some people use it for if they get behind on medication costs or hospitables if they're experiencing homelessness or about to, you know, the grant can provide relief for that.
00:50:38
Speaker
So, you know, even $500 does a lot, help a lot No, that's incredible. And I'll i'll certainly include a link um in the show notes for folks. I've got a lot of links queued up.
00:50:49
Speaker
Just my own monotropism here, just pulling up those links as as you all speak to them. That's incredible.
Reframing Neurodivergence
00:50:59
Speaker
ah Sort of on the flip side, you know, we've talked about the incredible work that Stimpunks does and the ideas that are driving it. And I love the neurodivergence reframe, the um disability reframe um away from you You know, such such an abled neurotypical ah center around which, you know, all of our systems revolve.
00:51:23
Speaker
So I guess I don't want to take it to like a negative or pessimistic place because it's been such a ah positive, uplifting conversation so far. But what do you think are those biggest barriers or myths?
00:51:35
Speaker
What are the biggest shifts that need to happen out there in the world that you're all out there working to try to to tackle? What are the biggest barriers and myths about disability and neurodivergence that are obstacles to changing popular thought?
00:51:49
Speaker
Well, we just happen to have a blog post about this called 14 Obstacles to DEI-AB. Okay. For a neurodiversity affirming practice. Okay.
00:52:02
Speaker
And so I'll quote briefly from this page and then list list the our 14 obstacles. We're going to get a listicle here. Listicles are great. um Getting human-centered neurodiversity affirming progressive practices into education, health care, and other systems is a battle, a grueling and grinding battle through bad narratives and bad framing.
00:52:24
Speaker
Framing is equals the mental structures that shape the way we see the world. Our community of neurodivergent disabled people encounters the following narratives over and over with dreadful regularity.
00:52:35
Speaker
They are fundamental contributors to the double empathy extreme problem that we neurodivergent disabled people must attempt to bridge. We make the attempt and hope that once we do all the work of building a bridge, you will endeavor to meet us halfway. You know, its by recognizing these frames in your own thinking.
00:52:54
Speaker
And then um we've got this list of 14 things. These are narratives that we see over over again healthcare and education and all facets of society.
00:53:06
Speaker
And they've only been amplified um this year with the current administration leaning heavily on this framing. you ah fourteen Our 14 obstacles are the politics of resentment, sameness-based fairness,
00:53:23
Speaker
little Attribution error be it from nowhere. Toxic positivity. Neurodiversity light. Scientism. Epistemic injustice.
00:53:35
Speaker
Behaviorism. Ableism. Deficit ideology. Better get used to it. The meritocracy myth and lowering the bar. If I could just signpost real quick, I think as somebody who was also a classroom teacher for a solid decade, I find myself now sort of on the outside looking into schools and finding that my perspective and my language comes from the systemically ableist and exclusionary and, you know, those perspectives that I, that the hat that I wore for so long. And so even as you're going through these, ah the the sticky web of obstacles that obstruct neurodiversity affirming practice, I find myself,
00:54:24
Speaker
you know, falling back into old habits with my language and my thinking. And i think I appreciate these as a reframe and an off ramp, you know, from deficit ways of thinking about neurodiversity and disability in the context of schooling towards the model of, you know, true neurodiversity and disability in society. And so I think for listeners, I think resources like these are are hugely beneficial.
00:54:54
Speaker
some of the biggest barriers and that people have is when they they feel invalidated and and if we feel that we have to conform and and mask to to to fit in to fit into society and to be accepted. so we're having to like feel like we have to perform to kind of normative standards and expectations in the way we speak, the way we dress,
Challenges and Misconceptions
00:55:18
Speaker
the way we communicate, um how we present, when we present, and where we present ourselves.
00:55:25
Speaker
And that can be really not only just invalidating, it can be really dysregulating it can lead to ah it impacts your your your your well-being it can lead to burnout ah over time um and a lot of these things are often seen as um people don't don't don't see don't see see mask and they don't see the impact of mask masking and it's almost like an invisibility for a lot of people. Do you want to expand on on that, Nora? Sorry.
00:55:55
Speaker
but guess it's just I was trying to make the point that kind of the ableist framing of like, you know, people think you have to act a certain way to be autistic. And, um you know, I've had people make comments before about, oh, you make such good eye contact, or you, you speak so well, or you're able to handle loud noises. And it's like, but that, you know, I already have my loops in, or if it catches me off guard, you know, it might be different. So it, people react differently, whether they know to expect something or
00:56:27
Speaker
you know, like I like to go to loud concerts, but I don't necessarily like loud noise, but I know to take my loops along to accommodate and regulate. So things like that, where, you know, when I meet some of coworkers at my husband's events or things like that, and they'll say, oh, I, you know, I never would have thought you're autistic. You don't seem autistic. Are you sure? Like things like that. And it's, it's baffling to me that, you know, just because I'm not like rocking back and forth and having like visible,
00:56:53
Speaker
struggling doesn't mean that I'm not struggling to get my words together kind of thing. Um, or, uh, you know, especially with ADHD, I've learned that I have to stare at the person or else I will forget that I'm even talking to them. So I've learned to make really good eye contact, not staring directly at you almost in ah an aggressive way that I won't hear you. So, um you know, there's that misconception that we don't make good eye contact, things like that. So it's just um bringing awareness, the fact that there are invisible disabilities and we never really know what anyone else is
00:57:26
Speaker
struggling with or or trying to regulate or or what they're trying to do. So we should just always be kind. so I always try to remind like my kids and stuff when we're in public that, you know, we would want people to be kind to us, of course. So we're always going to be extra kind, whether we know what's going on or not, because you just never know what somebody is trying to deal with.
00:57:48
Speaker
Yeah, I think it's that kindness, isn't it And that understanding and acceptance of people being different and everybody's got their own strengths and and difficulties. And when we're talking about disability, it's often systems that are causing those disabilities. a lot of the time ah autism itself is is is neutral, I'd i'd say. ah And it's it's the barriers in society that that are disabling people and causing all the problems and um making life very difficult and inaccessible and just totally exhausting for many people to try and survive it
00:58:23
Speaker
And going going back to the 14 obstacles that Ryan was going through, i think that brings us back to the importance of ah understanding and embracing neurodiversity, understanding the double empathy problem,
00:58:38
Speaker
validating lived experience and shared stories like what we're doing here and what human restoration projects and and stimpunks do so well it's just it's validating those stories those lived experiences of people coming together like in our solidarity sessions that we hold ah every saturday um on online, and just space for people to be themselves in in their own way and to share if they want to or to listen if they want to, or just to have a space alongside other people and experience ah and those neurodivergent love languages that we we talked about of...
00:59:15
Speaker
being in a in a you know shared space in a way that feels comfortable for you, sharing stories and po pebbling and body doubling and and validating each other's and experiences.
00:59:31
Speaker
together offering support. um And we've we've reframed the 14 obstacles just as a very brief summary. I won't go through every single one in detail, but those 14 obstacles that are in the way of neuroaffirming practice, and both, you know, in educational settings and society at large, we've gone through all of those 14 points and I can drop a ah link to you that there Nick, and about a reframing of um toxic positivity and the politics of resentment and behaviorism and ableism and how that can be looked at through a new affirmative lens. um So we can start talking and thinking about rigid ideas of fairness, um
01:00:18
Speaker
instead of blaming the system, sort of the child, validating lived experience, neuroaffirming cultures in school, seeing differences rather than deficits and creating more space for co-regulation and inclusion, connection, understanding the importance of sensory safety, psychological safety, learner safety, empathy and and flow, flow and monotropism, if that resonates with you as well, and to bring people together and together
01:00:53
Speaker
to provide better support in a more meaningful way. So how can listeners who hear this conversation and hear themselves or their friends, their family members, their colleagues in it, how can they pick up the conversation?
Joining Stimpunks Community
01:01:10
Speaker
How can they get involved Stimpunks? We have a community page at Stimpunks.org slash community where folks can request to join our Discord. And um that's where we spend most of our time hanging It's where we kind of run the show and we try to do so in as open a way as possible.
01:01:28
Speaker
And anyone can join by going to stembunks.org slash community and just filling out a brief form just to let us know who you are. And then we'll we'll invite you into our Discord and point you at ways you can help.
01:01:42
Speaker
I'm prolifically online as anybody that may follow me on Autistic Realms knows I'm online yeah and every single day pretty much sharing Stimpunk's work and and other people's work around the place as well. So um yeah, but feel free to to tag us or or reach out. and It'd be lovely to connect with more people.
01:02:01
Speaker
That's awesome. Thank you all so much for taking the time to talk with me today. Cool. yeah Thank you. It's been lovely, Nick. I'm glad we finally got a chance to chat. just Yeah, me too. This was, yeah, this was long overdue. So thank you guys.
Podcast Conclusion
01:02:19
Speaker
Thank you again and for listening to our podcast at Human Restoration Project. I hope this conversation leaves you inspired and ready to start making change. If you enjoyed listening, please consider leaving us a review on your favorite podcast player.
01:02:30
Speaker
Plus find a whole host of free resources, writings, and other podcasts all for free at on our website, humanrestorationproject.org. Thank you.