The primary purpose of Uniquely Human, the podcast, is to educate and inform. The views expressed during all episodes are solely those of the individuals involved and do not constitute educational or medical advice. Listeners should consult with professionals familiar with each individual or family for specific guidance. Uniquely Human The Podcast is produced by Elevated Studio. Music is graciously provided by Matt Savage of Savage Records. Hi, I'm Dr. Barry Prezant.
clinical scholar, researcher, and consultant on autism and neurodiversity, and a Brooklyn boy raised in the big city. And I'm Dave. I'm none of those things, and I grew up on a farm in Illinois. But... Being on the spectrum myself, I have plenty of personal insight to lend. And this is Uniquely Human, the podcast, a show that illuminates and celebrates autism and neurodiversity. Hey, Dave, do you remember we used to do a fun segment on Uniquely Human, the podcast called Enthusiasms?
I do remember this, and it was your idea because so many people, after they read your book or they attend one of your talks, that sort of thing, they see you speaking somewhere, they come away with this message that... Hey, what other people were calling or referring to as obsessions or preoccupations, which has sort of a negative connotation sometimes or most of the time, you refer to these things as enthusiasms.
yeah and and and you know that uh also this aligns so nicely with what um so many autistic people refer to as their deep interests in many cases so we decided to bring enthusiasms back but this time we are bringing on a very, very special co-host for this segment, and that is my son Noah Prezant. So Noah...
Welcome to Uniquely Human, the podcast. And we are so thrilled that you will be carrying on this enthusiasm segment from here and forward. Well, hi, Barry and Dave. I'm so excited to finally be on the podcast. And I'm excited to share enthusiasm, celebrate enthusiasms, and just reading through this amazing backlog we've got of enthusiasm just waiting to be shared on the show I've been, you know, reflecting on.
everything I'm enthusiastic about, and safe to say, I think I'm enthusiastic about enthusiasms. I'm ready to share them all with you and excited to get started. This is just wonderful. And now it's truly a family endeavor. It always felt like family, but now we can legitimately say we've got someone here carrying on the torch. Yes, and we are so happy.
proud to have Noah to go through the enthusiasms that you, our listeners, send to us. So please keep sending the enthusiasms in and you will just light up Noah's life when he has a chance to read so many of them. It just makes me so happy to see what everyone's interested in and passionate about. So Noah, give us some examples of things that people have submitted that are waiting for us to explore.
Well, we really have a wide range. Everything from garden sprinklers to animals to HVAC systems to different musical instruments. Anything you can think of can be an enthusiasm. We've got it. I can't wait to dive in, especially on the sprinklers, because two summers ago I had to rebuild most of our lawn sprinkler controller manifold. Never had done that before, and I'm very well versed in sprinklers now.
What's it going to look like? Are we going to play recordings of people? Are we going to unpack their enthusiasm? What does that look like? So every week I'll come on the podcast or every other week. And I'll just kind of share someone's enthusiasm that they've submitted to the podcast and we'll just talk a little bit about it and what we might be able to learn and take away from it. Love it. Absolutely love it.
Great. So we really look forward to that. And we hope our listeners will, as Noah said, be enthusiastic about our enthusiasm segment. So thank you, Noah. Look forward to your contributions. Well, I'm looking forward to it too. And make sure to share your enthusiasms with the podcast. And in the future, we might have some free podcast gear to give out if your enthusiasm gets selected.
All right. Well, that sounds awesome. Where can people submit their enthusiasms? Like, where can they reach out to us? So you can go find the form on our website, uniquelyhuman.com, the podcast website. And there's a Google form to fill out. Just fill it out with any enthusiasms you have, any other comments, and it'll go straight to us. Beautiful. Love it.
Today, Dave and I are thrilled to have two very special guests on Uniquely Human, the podcast. It is an area that's been of interest to me for many many years actually in my work in autism and that is the way we look and understand the experience of autism and the experience of families through different cultural lenses. Today we're going to be talking about the cultural lens of both First Nations communities in Canada as well as Native American communities in the U.S.
So first, I will introduce our guests. Otelia Johnson, welcome to Uniquely Human, the podcast. Thank you so much for having me, Barry. This is really exciting. Great. And Grant Bruno, welcome. Thank you for having me as well. Great. Just a little bit of background.
I think it was last spring, Otelia, that you contacted me because Otelia had read my book, Uniquely Human, and just wanted to chat about... issues um both in raising your child um but in general what's going on in native american culture and the views of autism and the traditional mainstream western views and then you said you must speak to grant and you
I must get in touch with Grant, which I did. So why don't we just move ahead and have each of you tell us a little bit about your personal histories, your journey into autism advocacy. and how you reach the place you inhabit right now. So why don't we begin with Otelia? Great. Yeah, absolutely. So yes, it was definitely spring of 2024. I believe what I was doing was going through the process of getting a diagnosis for my son. And so I'm an autism mama, very proud.
But also we had a situation where his father wasn't necessarily accepting and ready to embrace it. And we didn't have diagnosis yet. And so I was doing research. You know, reading your book, listening to your podcast, finding people like me and and also hearing his personal story, which I'm sure he'll share from a father's perspective. And I thought. This is something we need to put on Uniquely Human and have others listen because I can't be the only one, you know, having this experience.
I also work for the University of California in Davis, and I partner with over 200 tribal, I guess they're social workers in a sense. This is tribal TANF. And they support families and children. It's 40 different agencies that we invite to a conference every year. And we talk about different issues that we're experiencing across the 40 tribal agencies and how we can support. And autism, neurodiversity has always been a topic. And this year I started digging into it and learning more about it.
trying to figure out how can we support so we're at the initial stages of it all and i just am here to to share my perspective my experiences and also to share that very You and your podcast, your community that you've built has really influenced a lot of the research and just a lot of what we're doing in terms of the trainings that we're offering to families. It's good to hear. Grant, tell us a little bit about your activities, your family, and anything else you wish to share. Yeah, for sure.
Hello everybody, my name is Grant Bruno. I'm a registered member of Sampson Cree Nation, which is one of the reserves that makes up Muscoachis here in Treaty 6 territory, located in Canada. I'm also a parent to autistic children. I have two boys who are on the spectrum. And one thing I tell people, though, when they want to work in our communities is that it's not really who you are, but it's whose you are.
And so what I mean by that is that when I go out to any First Nations community, one of the first things they're going to ask you is, A, where you're from and who are your families? And so that's where I'll start with my families. So my families are the Lightnings. on my dad's side the cut knives on my mom's side and then the brunos which are also on my dad's side and so these families are pretty
prominent here within Treaty 6. I can actually trace my lineage back to a prominent chief in the 1800s. His name was Ogimail Mistahey-Maskwa, and it was a chief big bear. And he was one of the original signatories that actually was fighting against these very colonial governments at the time with the Northwest Rebellion. He was fighting on behalf of his people. But his one redeeming and his one, I think.
the main feature that people talked about him was that he was a very generous and kind and compassionate leader and so i i feel like that's kind of like where i'm trying to come from with the work that i do And so I'll actually just talk about my dad for a second, just because it's so fresh. So actually, my dad's funeral was last week. And I...
My dad was a true trailblazer in that he actually worked with the mounted police for 26 years. And so they're a federal police organization here in Canada. And he retired a staff sergeant. which is pretty high ranking, especially for any First Nations member. And he was actually in 1994, he was awarded the commissioner's commendation for bravery, for saving two people's lives, for pulling them out of a vehicle that had crashed and was on fire. And it was going to, it actually ended up.
floating as soon as he pulled them out. So I think about my dad and his ability to be a trailblazer and to take on these colonial institutions from within allows me to do what I do today. And so I'm currently an assistant professor in pediatrics at the University of Alberta, again, a very colonial institution. But there are some people within these institutions that I've been able to connect with that allow me to do the work that I do. And so, as mentioned earlier.
My sons were kind of diagnosed somewhat close in age. So my older son, who's a twin, he was diagnosed when he was in grade two. And so his autism, the characteristics or how it presents was very much. He could do all the things academically, socially. He was awkward, but I think most kids are. I'm awkward myself. And it wasn't really until we got him into certain social situations, like when it was really loud.
or it was very there's way too many people that you started to see certain characteristics come out of them and so i'm really grateful for the the teachers at the time because they didn't scare us away from that diagnosis. They were very, I think, gentle and accommodating and they used the right language and they said, you know, we just have some concerns. Would you be open to getting an assessment? But we went ahead with it.
And then he was eventually diagnosed and we had a good discussion with our pediatrician. But for our youngest son at the time, his autism was very... You could see it. And I had all these concerns already because I was, you know, we just had this other diagnosis. And so I was the one who went and got him on our waiting list here. I was the one who got him assessed. I was there for the whole process.
And it's interesting being a father in this space, too, because I feel like a lot of the attention should and still, I think, should go to the mom. But when you get excluded out of things and they automatically assume, OK, where's the mom? I would argue that I'm his primary person. He lives with me here in the city. I'm the one who sets up his appointments. I'm the one who gets some funding. I'm the one who pushes all these different things. And it's often that they're looking for the mom.
And so I'm in this interesting space where I'm trying to do the best that I can for my children to advocate and do all these different extra things that most parents, you know, take for granted. What I've learned over the years is that autism is really a gift, right?
And that's one thing that they say in our community that it could be just one singular gift. Maybe this child's really good with numbers, right? Maybe they have an amazing memory. Maybe they're really creative. And that's that one thing. But in my sense. The gift has been...
When I fully embrace this journey as a parent to autistic children is when my life really shifted for the better. The reason I went and I went ahead after my master's and I even pursued a PhD was because my son was just diagnosed. And so my PhD research was all on autism in First Nations communities.
which has led me to now become a professor continuing that work and it's just been one thing after another and it's like this gift that keeps giving and i often tell people that you know my sons They may not have like one special gift, but them coming into their lives and choosing me as a parent is what we believe culturally was really, I think, the gift that I'm allowed.
now gifting those gifts and supporting other parents as well. You know, it's a phrase that I like to use is that autism shapes lives and shapes. families lives but unfortunately as we know especially in mainstream western culture the shaping was always negatively toned it wasn't in terms of the doors that open that we choose to step through and that's exactly what you've done grant yeah yeah and and uh the beauty of what you both just expressed uh is is that like it's not often framed as
We have identified your child's gift. Certainly in American medicine, it's we have identified the problem. And here's the problem. It's framed in that way. So I love to hear the expression of this is the context that you're building around. So, of course, see it as the gift, right? And I'll tell you, when you first when we first spoke.
I remember you saying that the way you saw your son was very, very different than the messages you were getting, either online or in other ways. And that's right on the point of this discussion. Do you want to talk a little bit more about that? Absolutely. And I'm shaking my head as we're discussing this because we finally have our diagnoses. We had two from two different entities, same result as of August of this year.
But prior to that, as we're doing assessments, everything's very deficit driven and they assign, you know, they meaning medical professionals, you know, recommending. therapies that don't necessarily fit well with me and my personal beliefs, my value systems, which really do stem from My tribe, and so I didn't mention this in my intro, but I am Cora, which is a tribe from Mexico. But a lot of my family is here in the U.S. And very similar to Grant's.
beliefs and his tribe's beliefs and so i really resonated with that documentary which i really recommend everyone watch it's only what less than 20 minutes so it's just Sorry, we will put a link on the page so people can get to the documentary and we'll have Grant talk a little bit about where you're going from there. So yeah, go ahead. Well, perfect. Thank you for that. And so very deficit-driven information. As I explained to doctors that I actually...
I'm embracing it. Like I see this as a gift. This is beautiful. My family does see it as Jake. My son's name is Jake. It's Jake having gifts that no one else has. And we should honor him for these gifts. And so that's how we view it too. And doctors would say, well, that's a great way of coping. And I'm like, I'm not coping, you know? And so those were some of the words we'd get at the very beginning and to this day.
but yeah I mean coping kinds of implies well you really should be feeling this right but taking this path is allowing you not to feel that that you should be feeling and then actually Grant talks about that a little bit in his film in terms of your first response when you got the diagnosis, but then how you changed.
Yeah, I recognized it as my own internalized ableism, just to be honest. And it's one of those things that I think a lot of people within all society, you know, are contributing to for sure. I think that ableism is absolutely prevalent in all spaces it's something that a lot of people don't even think about twice
They don't think about certain language that they use or whether or not a space is going to be inclusive or even the environment, right? If it's going to be too bright or too loud. And these little things that me and Otilia now have to really plan around are other things that...
a lot of other people just aren't thinking about. And I think that for me, I was influenced a lot by pop culture, right? And so you hear that word autism, and it's automatically, as Otilia was talking about, there's deficits. And that's your belief system. is that it's this horrible thing that is going to destroy your life. And so those become kind of behaviors and so on and so forth. And I realized early on within that first month that... I was feeling sorry for myself at first, initially.
And I said to myself, after about that first month, I was like, no, I'm not feeling sorry for myself. This isn't about me. I have to be the best parent that I can be for my children. And so I completely shifted it. And I said, I'm going to fully embrace what's happening in my life right now. I'm gonna just fully accept my children for who they were.
And I'm not going to allow this label that some person, this medical professional, put on my child to define how I parent and operate with my child now. This is just a small step in a larger journey. I only really see the diagnosis as a funding mechanism and it doesn't define who my child is. And so that's been my approach. It's like, yeah, I got the diagnosis so that I can get extra supports and services for my children, but it wasn't going to make me.
treat my child in a certain way. And I think that's one of the beautiful things about our cultures as Indigenous peoples, and I see this everywhere. I've been able to connect with Indigenous researchers who are doing autism research right across the world now.
There's one kind of connecting belief is that we need to accept our children for who they are, despite the diagnosis. And there's another thing that I think is quite common is that a lot of Indigenous... communities really believe that our children are really are gifted to us just generally and they're for us as as Cree people here in Canada we believe that the creator actually that gifts us our children, that the child actually chooses its parents.
And so it's through the spiritual interpretations of becoming a family and becoming a community that I've really influenced how I parent. And it's something that I'm trying to bring back again to my communities because through colonialism and through all these different...
disruptions, a lot of these teachings have been lost. And I feel like what we're really lacking within our systems and these institutions is that human side, right? So Talia talked about this medical profession telling you that's how you're coping. One thing I tell medical professionals is that the way you're being trained is dehumanizing. And you see the symptom or the diagnosis first, and you see the human second. And we need to start really thinking about seeing the human first.
And then seeing all these other things as secondary, right? As important, don't get me wrong, your culture and your language are all very important. But human to human interaction is, I think, the most important thing that is missing from our medical professionals, from education, from social work, from all these different things. As a parent myself, it's... It is easy to look around and do the either comparison or, you know, you're sometimes you fall into the trap of.
Well, you know, why is this going to be such a challenge, you know, potentially lifelong challenge for my kid when I see these 30 other kids out there and it's not a challenge for them. And you do get that kind of woe is me, but also.
I always go back to, and I quote this all the time, but our late friend Steve Silberman one time in a talk he was giving said, you know, when you... lead with the pathology model you're essentially establishing that there is a version of normal and that a certain segment of the population is a quote-unquote failed version of normal and so grounding it in who is my child accepting that this is my child
this is this is what they bring to the world is is setting yourself up to have willfully calm approach to bringing your child into the world at their speed and meeting their unique needs And you're doing it from a place of empowerment and love for your child and not so much from, oh, I got to figure this out. I have to do that. We got to get this going. It's like understand who your child is, lean into that and work with that context.
The language that we use, and I want to go back to this because Grant shares in a shorter version of his film, because I understand it's going to be a longer version, that... In your tribal language, the word for autism translates into being different. And interestingly, and I don't have it in front of me, so I apologize, but I just read something online where there's a discussion of a Mahdi term.
for autism, which is very, very similar translation. And I did work in New Zealand for a number of years and interface with some of the Maori communities there. And again, it's that. The language doesn't pathologize and language carries culture to a great extent. So it's just amazing. I kind of put this in some of the things that I wanted to share to discuss with you guys is that it seems that, and I don't want to overly generalize, but indigenous cultures, you know, had what...
So many of us in Western society are struggling to move to. And that is a very, very different view and not pathologizing view. Just looking at people, every person.
is different from each other, which is the goal of what we hope will come out of the neurodiversity movement. So I don't know if you want to follow up a little bit on... on the language piece um with this and and certainly it's a much much deeper piece is what you've already discussed that your children or all of our children are gifted to us and choose us as opposed to well we have
these kids that pop out of us and then you know we have to raise them yeah so i can i can lead on this but i'll tell you if that's fine so i really So just to be clear, there is no word for autism in our language. I think that even the word autism doesn't really fit autism in itself, right? It's not. It leads to this, unfortunately. What I've learned is that, okay, so I'm Nehyo. One thing that colonialism loves to do is label.
I'm labeled as indigenous. I've been labeled as Aboriginal. I've been labeled as Indian. I've been labeled as native, savage. And all of these labels, one thing that they do is they create a divisiveness. And it leads to this really, unfortunately, colonialism also loves to think in black and white. And what I've learned about my language is that as a Cree person, as a Nayao person, A, our language is spiritual.
It has spirit to it. And it's actually a connecting language that wants to find connections between you and all the different things that are around you. This could be connections to other people. This could be connections to your community. This can be connections to your food, connection to land. It's all about finding that connection. The other thing that our language is, is it's verb based and it's about action. And so when I think about.
Some of the words that we use that are, the word we would, one of the words we would use for autism is achakpamatsuan. And it means a spiritual way of life. And so the spiritual way of life really, I think, has a lot of actions built into it that for me. One thing that I try and allow my children to do is teach me about their spiritual way of life. And those teachings are the actions that I need to be taking on in order to support them.
The other thing is our language is very nuanced. It allows for two sometimes competing ideas or beliefs to be as one. And I think that is one of the most beautiful things about the language is that it doesn't lead to that black and white thinking, because to me, the black and white thinking is where we get into problems, you know, and I fully believe it's a lot of it's rooted back into the church.
you know there's this idea about heaven or hell good versus evil that leads to us versus them and there's a divisiveness that is built into a lot of languages that you don't see with our languages because we're looking for connection And we're looking for that spiritual and that that there's another word we use in our languages quite often is which is one of our legal traditions.
But what it is, is it's about relationality and interconnectedness between people and things that are animate, which have spirit. Now, we view spirit differently. For example, one of our... Teachings is for Isini, which is rock. And so we believe that rocks have a spirit. And the example I love using is that, you know, I live somewhat close to the Rocky Mountains. When you go to the Rocky Mountains, how do you feel?
Right. Do you feel the presence there? Do you feel good? Do you feel all these different things? That's the spirit that's connecting with you. And I think that is such a beautiful way of looking at the world. Right. So rather than looking at.
the differences between me and you our language wants to find the connection between me and you and that's something that i think is missing in a lot of different institutions because when you go into go in for a diagnosis or you go in to even just get any types of supports and services One of the first things they're going to ask you, see about you is like, okay, what's wrong with your child? What's right, right?
And so I think that there needs to be a substantial shift in how we're operating and then how the policies are getting built for these and the assessments and all these different things that go in line with it. I'm trying to address this a little bit in my community. So we've actually started doing in-community autism assessments. Now, my background isn't clinical, but I work with a community pediatrician and we do...
We're trying to shift from culturally informed assessments to something that I'm going to call, and one of the elders gave me this idea, was ceremony informed. Because for us, our ceremonies are places where we're the most spiritually connected, right? We have different types of ceremonies for different types of events, whether it's celebrating something or it's a funeral or whatever else.
And so what we want to do is bring those teachings from the ceremony or assessments and allow families to be able to connect with that. And we're starting really slowly just by bringing in different cultural items. We did an assessment about a month ago and I brought all my different furs in, right? So we have like beaver furs, we have mink, we have all these different things. Kids love touching them. So little things like that, that allow, I think.
for our culture to be present and for the families to be able to connect with to make them feel safe. Otelia, so I'm curious about your experiences with... When you meet annually with representatives, with elders from so many tribal nations, and, you know, what you see is going on in discussions.
that they have when you have those gatherings. Absolutely. As we work to dismantle white supremacy, because that is really the underlying... issue that we're seeing across medical professions, educational institutions, in the trainings that we're delivering to tribal agencies. Just want to make sure that we're honoring diversity, equity, inclusion in every delivery from the content to the facilitation. We'll have discussions around.
a lot of unlearning that we have to do, because like Grant says, it is colonialism is just so deeply ingrained in many of us. And so for me, it was. And a lot of the families that I've met share the similar sentiments is, you know, we have our child who is autistic and suddenly, and I don't think I quite. I don't think I quite went through what Grant described, but a lot of parents do. suddenly their dreams for their child are no longer, you know, those same dreams. They have to shift a little.
And that's okay. But it's based off of, you know, these standards that colonialism has essentially set for all of us. You know, are they going to be able to have a job? And as I thought about it, I'm like, you know, he doesn't have to work. My kiddo doesn't have to work. It's fine. He'll be, you know, he'll be able to offer other gifts. And at this point, he's so young that we don't, you know, we don't quite know what his abilities will be like.
But he will still be able to offer gifts. And he's offering gifts to this day. I mean, I'm doing all the work that I'm doing for communities and with communities because of him. He doesn't know it. But that's the gift that he has given me. And I'm the gift that doesn't, you know, just stop at one person. I mean, what did you say, Grant? You said the gift that never stops giving. So that's what's happening here. I'm working with our school district, which is a very rural area.
And they're so interested in learning more about how we can incorporate cultural responsiveness into all of the trainings that their teachers are doing. We're primarily... In this area, I would say it's primarily white. And so for them to meet little Jake, who is a Native boy, who's autistic, it's different for them.
But they want to learn. And so I'm so grateful for that because it could be a whole different situation, you know. But I'm grateful that we have a community that want to learn and they want to help. And so. As we work with the tribes, we ask them, okay, so do you have anyone who is an adult, who is autistic, who might have... gone through some of those therapies that were not necessarily culturally responsive who would like to talk about their experiences and so
My goal is, as we develop curriculum, is to have their voices involved in the development and in the facilitations. I don't know if I answered your question, Barry, but I kind of went off into... rabbit hole, but it's just so many different thoughts that are flowing that I think are based off of white supremacy and things that were dealing with right now across tribal agencies as we're you know focusing on on supports for our children the youth and adults and elders
One thing that strikes me as ironic, and I don't know if that's the right word, is how, again, this is a white middle class guy saying this, how indigenous communities are so respectful of what...
past generations ancestors have given us and have passed down. And also how you think about how our actions now will affect generations, many generations in the future. And I think the irony is that people who don't think that way, which is most of, you know, white Western mainstream culture, get so caught up in what you said, Otelia. You know, will my son get a job that brings in good income when he's 15 or when he's 25 or what's going on in the future? And does that bring a certain...
Difficult question. I'll say that up front. A certain piece to you, knowing your grounding, you know, coming from your culture and from your ancestors, as well as being very, very focused on. how we raise our children now will not just influence the child in front of me but will also influence other children down the line and generations to come i'm the product of
A lot of colonialism, but also the product of my culture. So in Canada, we had the residential school system, which took children, little children out of their homes, put them in these. They're not even schools. They were institutions. and then try to assimilate them right you can't speak your language you can't do cultural things you can't you're you're severely abused in in multiple ways and i had multiple generations go to these so my grandmothers went my mom went
And then I was the first generation to not go. And so the fact that I'm even here having this conversation is, I think, a true testament to my culture. And I say that because, you know, I'm the first person from my entire family to go and... do a master's, go do a PhD. I'm the first person. I'm one of two First Nations professors in Canada in pediatrics. And I'm really grateful for all these opportunities.
But one thing that I keep going back to is that when I started to finally learn about my language, learn about ceremony, learn about culture is when I finally started to. have an identity and a foundation that I could operate from that gave me the confidence and the ability to go and interact with people and do these types of things, right? Because if you would have met me when I was 18, 20...
you would have been like, no, he's not going to go be a professor. He can't even talk in public. And over the years, one of the things we do in our communities is we go to ceremonies and we get gifted. our ceremony names, our Cree names, our real names, our spirit names. And so mine is Osawistim, which translates as yellow horse. And when I was gifted this name, I didn't really understand why I had this name.
right and then over the years i i've learned more and more about the the this the horse spirit um i'm not sure if anybody here has actually ever seen a horse get broken in like saddle bro saddle brock broken That horse has to suffer suffer for days. Right. And so they, they literally starve it. They dehydrate it and they, they just run it around in circles repeatedly over and over again. And eventually you put the saddle on and it gets used to that.
And then eventually a human gets onto it and it gets used to that. And then by the end of this whole process, that horse becomes a better version of itself because of the suffering it goes through. And I realized that was what I was going through with my graduate school. And so these teachings and the spiritual nature of these teachings have had so much impact on my life. And I'm continually learning how to suffer, really. A lot of our ceremonies, they require suffering for love.
And at the end of it is always that, and I was taught that our ceremonies, at the core of them is always love, at the very core of them. And that's why you go to them. And that's why you go and offer, you know. your own prayers or it's sometimes people offer you know parts of them literally um but i think that when it comes to me connecting back with my culture it allows me to do the work that i do today um and so when i think about
You know, my ability to parent, too. I've tried to go back to our traditional ways of parenting. Now, this is the interesting thing is that Western science. has proven that indigenous parenting methods are superior than european ones and i think that's something that is missing in a lot of homes a lot of i think
Parents within Western society, they look at their children as possessions, right? As something that I'm in control over. I'm the authority. You have to listen to me. And for us, we switch it. And so for us, it's very much, what are you going to teach me? And how do I come into your world to be a part of your world, right? How do I connect with you on your terms?
and allow for us to have this balance within our relationship where I'm not just the one telling you what to do, right? So I think that when it comes to my parenting, that's what I try and do, is I try and get into my children's world, and I sit there with them. You know, there's times where I have a daughter four years old and we just play Barbies. Just sit there. And science has shown that a dad playing...
Barbies with their children or any type of activity like that is really good for their development, right? It's really good for them to connect and to see their dad, to be able to really see like a male role model in that space. just allowing them to play with them, right? And so unfortunately, colonialism has taken a lot of these away. And so what we're trying to do in my community now is to encourage parents to come and play with their children in the clinic.
and teaching them how to play right because again residential schools they've taken they've taken so much our ability to parent was a huge one And our ability to love our children unconditionally was taken away. And all these things were taken away. But through our culture and through ceremonies and the love that you feel within them, we can start bringing those teachings back.
Before I forget, I wanted to mention this. Grant, I don't know if you coined this, but I've never heard this before and I really value it. It's spiritual intelligence. And I love that. And I think the discussions that we're having is about spiritual intelligence, which I think many of us would do really well. We can benefit from. from having more spiritual intelligence across medical institutions. What you've discussed, Grant, is really powerful and can change.
A lot of things that are wrong right now with how families are receiving information around autism and how society is essentially viewing people with differences. When I think about the history of quote-unquote autism interventions and treatment, it was all about... we're going to make you look like the facade of what we think a typical child is whereas in you know certainly in first nations but in in u.s as well um
And those institutions were about, we're going to make you look white. We're going to cut your hair. We're going to make you talk just our language. And there are interesting parallels. I know this might. you know, ruffle the feathers of some of our listeners. But for so many years, and especially radical behavioral approaches, it's we have a vision of what we want you to look like and be like.
which almost takes the spirit of who you are as a person, grabs it, and just throws it in the trash and says, we're going to rebuild a new person here. And we're still, to use the phrase that I think both of you use, we're still unlearning that kind of medical model approach, you know, to supporting kids and families. I just want to add one other point.
um i think we have to do a whole episode on autism and spiritual connections because this comes up with autistic people that i've met um talking about You know, they felt they were so much more connected to the spirit world, especially when they were children, before they became socialized into our culture. I know Grant has referred to that regarding one of his sons in terms of...
having some kind of closer connection rather than what we've all been indoctrinated into. So I don't know if you want to go a little bit further with that. I just hear it. I'm fortunate enough that I hear from so many parents and so many people, so many autistic people. And this is an issue that that comes up. And that's that connection to this. other level of awareness and connection that in our day-to-day running around making our little things done in life that we're very far away from.
Yeah, so just to go back to your original comment about that, wanting people to conform to our beliefs and how we should view them. So Duncan Campbell Scott. who's widely considered the architect of Canada's residential school system in the 1800s. He has this quote, it says, the residential schools, like, I'm going to paraphrase.
The intent of them was to kill the Indian in the child. And this approach literally did that. But it caused so much harm to that child that it's now we're dealing with it today.
intergenerational trauma gets passed on and it's become this really destructive mess within our communities. And what I see from the medical model approach of focusing on those deficits and trying to develop these interventions to stop a certain behavior or do these certain things is we're still trying to kill the autism in the child and we're getting the same results.
And it's like we haven't learned from our history about how harmful this is towards children. For not just accepting a child for who they were, who they are, and then going from there. And so what I see, unfortunately, with a lot of parents is like, I'm going to do all these interventions, these therapies, and then maybe one day I'll accept my child. For me, it was always full acceptance. I love my child no matter what. And I'll do the other things as long as they fit my belief system.
And it's going to be a benefit to my children, right? And so, again, flipping these things on its kind of head a little bit. But then when I think about, like, the spiritual nature of it and how important that is, again, to our cultures. There is, I didn't coin the term spiritual intelligence, unfortunately. I'm not that bright. It's from a community report. So there's a First Nation in Saskatchewan.
which is just east of where I live. Kawasis First Nation, and they did this report on autism, and they engaged with elders, and they got these different words. And one of the words was, which translates as a given or a quiet spiritual intelligence. And so I think that, again, when it comes to this kind of approach that we're trying to take is really honoring those gifts that children have and celebrating them for who they are.
And then if we need to get some sort of therapy or service in place, we can do that. But it isn't never the intent of it is never to change that child fundamentally. Right. And so when I think about, again, my approaches to parenting, I don't want my children to feel like they're less than because I can't accept them. I don't want them to feel like there's something wrong with them. And I think that when it comes to...
Even the supports we bring into our household is just something we do. I'm very mindful of like, whether it's a speech language pathologist or an occupational therapist. I watch them when they're working with my child, right? Like I'll sit there with them and I'll work with them. The number one thing I'm looking for though, is that are they building a connection with my child first and with the family?
And through that connection, how are we going to, you know, allow our children, my children to learn from them and develop these different skills? Because if you go in there just thinking, oh, I'm just going to go in and have this work plan and, you know, I'm going to do this strategy and it's going to be.
ABC, but I'm not going to actually build a relationship first, you're going to get much different results, right? And I think as Indigenous peoples, one of our common characteristics is that we are relational people. And this is what we want to see from all supports and services, whether it's medical professionals, social workers, teachers. We want to see a relationship that is built and then we go from there. I can see the challenge being.
Somebody comes in, like you said, with their agenda, research, evidence-based. Again, whose research? Whose evidence? How has the evidence arrived at? I'm going to come in with my agenda. I'm going to work with your kiddo. I'm a speech-language pathologist or therapist, and we're going to do some swallowing work. We're going to do some oral motor stuff, and that's what they're bringing to bear. That's what they're bringing to the table.
And we're talking about a very complex, the complexity of bumping up against. Not just the way somebody's family does things, but the way that family's entire culture informs how they do things. So bumping up against these cultural differences. And I will say I have never... consulted to a group of professionals here in the states uh where spirituality or um cultural awareness sensitivity uh you know spiritual intelligence that never comes up it's always
the mechanics that, like you said, the black and white, the data, you know, we want to achieve this result. This is how we're going to. So have you have either of you seen instances where you had a professional working with your children or. some child from your community where those cultural, um, boundaries were, were either unintentionally disrespected or bumped up against. And how do you work through that?
you know, in, in real time or, or do you address it? I should share that I have experienced that throughout my journey as a mom to little Jakey and. I should also share that some sort of advocacy. I've always been an advocate, a social justice advocate since I was a little kid. But now that I'm a mother and this is my child, it's like a whole other level. I didn't think Mama Bear was a real thing, but it is.
You know, I come across challenges just about every day. And it's sad to say that every day I wake up thinking, what am I going to, you know, who am I going to battle today? And what I've. done recently is after i voiced my opinions and thoughts and you know openly disagree with doctors and teachers educators um I extend opportunities to partner together because I realize that they need to understand what I mean and maybe some education around.
what my culture is and what I believe in and what our values are. And so once we have that discussion, they're open minded about it. And we have, you know, meetings to talk about how we can. partner to support jake and his friends in the classroom and so it's something that i appreciate but like i mentioned earlier um it could
go the other way or they're just like, nope, we don't want to hear from you and shut you out completely. But I'm I'm very lucky to have people around us who are open to listening and. building partnerships so that we can work together. And so that's been my experience. But I do hear from other families that unfortunately, they are getting doors shut on them. And so
even though it doesn't sit well for them to go along with certain therapies, they think this is the only solution. So they go with it. And so they're going against their, I'd say. their ancestral wisdom, and that is detrimental. And so I'm hoping to be able to support those families. But it's across the board, a lot of our tribal agencies, because they're in rural areas. And so...
To get resources where someone is going to actually listen to you and respect your values, you'd have to drive, you know, hours to get to a city. I'm technically in the Bay Area. So we have a lot of resources here and also open-minded people in the Bay Area. And getting back to the point of, you know, have you run into professionals who...
create those walls as opposed to those openings. One thing that we like to say is, as far as a bit of advice, you know, how can we help people to join us on the journey? It's not about dictating. It's not about a professional holding the reins. It's about this family is on a journey. How can we respect and try to understand the family's perspective of being on that journey? There is a word for that when it's done right, and it's called family-centered practice.
But unfortunately, that's very often used just as lip service. And it's just like, oh, yeah, we like families. We're nice to families. That's family-centered practice. No, no. You know, that's the facade. You have to go so much deeper than that. I've heard of child-centered, which I'm really, really drawn to that because like Grant mentioned, I really see him as his own person.
And even though he my son doesn't communicate yet in using words, actually, he communicates in many other ways, but he doesn't actually use words at this point. I have to. really just listen to his other ways of communication. I just want to interject something I've just learned from this discussion because I use the term child-centered quite often.
From this discussion, what I've learned is child-centered is understanding the child's perspective and what they're interested in. But what I want to add that I've learned, so thank you, Otilia, and thank you, Grant. is that child-centered means what can I learn from this child? You know, how is this child going to change me and help me be a better human? And that very often is not a part.
of when people talk about being child-centered so it's interesting that you know family center came up because i actually i'm starting up a project right now called the indigenous caregiving collective And so within this collective, we are going to be recruiting caregivers from all different backgrounds for all different types of caregiving that they give.
And my rationale for it was that we have a pediatric clinic in our community now. I think one of the only pediatric clinics that is dedicated to children's health that is in any First Nations in Canada, which is... Great for us, but also very scary at the same time for a lot of other communities. And in this clinic, again, I work really closely with a community pediatrician. Her name is Dr. Heather Dreisch. She's amazing.
She's not from the community, but seeing her operate and connect with families and be really relational and really be there committed to the community, despite all the challenges that that presents. Because you can't have a conversation about anything disability related within Canada without talking about jurisdiction. And so in 2016, so this is just a little over eight years ago.
Canada was found guilty of human rights abuses against First Nations children living on reserve. And Canada likes to present itself as this inclusive, great society for a lot of people, unless you're First Nations, of course. Then you get lesser services. Your funding isn't equitable. Even people wanting to come out to the community, there's so many barriers to that, right? They get paid way less. There's a lot of...
fighting in between different jurisdictions. Like we have provinces here, which are states for the US and the federal government over who pays what, because we're considered federal jurisdiction. And so for her to do the work that this pediatrician is doing and to be able to commit to this is something that I was watching. And so I started this Indigenous caregiving collective to implement.
a family-centered care model within this clinic. And so what we're doing actually is we're hiring a care navigator to work in the clinic. And so this care navigator is going to support caregivers and parents as they come into the clinic. And a key thing and one thing that I was missing from the assessments that I went through is that you go to these assessment clinics.
You're there for a day, maybe it's a half day or whatever they have you there for. And then that's it. There's no follow up. There's no relationality built into it. There's no, how are you doing later? And so for our clinic, not only do these. Families now get all the care from this one pediatrician, but she also does assessments. And so there's a relationality built into our clinic that it's like they built a trust.
They see this, our team. And then even afterwards, this care navigator is going to reach back out. That's another key thing. is that a lot of our, because of colonialism and because we've been so conditioned to not reach out for help because of it, is I find a lot of parents trying to do things in isolation.
and this leads to all sorts of different types of problems you know mental health problems spiritual health problems all these different things and so i want to provide a a support within the clinic that reaches back out and says hey Do you need anything a month later, two months later, whatever it may be? The other thing we're doing is I'm only one person. And so as much as I want to be in every room advocating on behalf of everybody, that's just not possible.
And so the other thing we're doing within this caregiving collective is we're actually going to be developing caregiver workshops for advocacy, for system navigation, for how to not take no for an answer, basically.
and allow and empower caregivers as they go on their own journey so that, you know, the work that I'm doing isn't just like... isolated to my family i'm taking the teachings that i've been able to again what my children are teaching me what you just talked about and applying it to these workshops and and and teaching them that this is how i do things and maybe you can take some lessons from it
Because navigating these systems is tricky at times, right? When you go, for here anyways, when you go and negotiate for a contract to get disability services, they really want you to focus on, again, those deficits.
And for me, that just feels wrong, right? I'm not going to talk about my children in that way. And so what I've learned is that if I frame it more of a safety concern... it feels better on my end because there are a lot of safety concerns right with lack of communication or inability to recall certain memories throughout the day and so on and so forth
that not only does it make me feel better, but the people who you're negotiating with are more likely to listen, right? So framing things in just a little bit of a different way that isn't so detrimental or deficit-based. can really, I think, help, I think, a lot of different people in this space, right? So, yeah, so I think family-centered is something that I've always thought about. And so having a clinic that, you know, the whole family feels supported at.
But also being able to provide clinical care for children is going to be, I think, really impactful for my community. I'm really hoping that other communities can take this model on as well. Oh, yeah, I'd love that. I'd love that.
the family-centered community-centered and as a mom i'm finding that a lot of parents are trying to navigate systems on their own and they do feel isolated they do and so I have a lot of different groups across different play-based therapies that Jake attends where we're just you know, connected and sharing resources. So I'd love to be able to learn more about what you're doing, Grant, so we can implement that here in the US. And it's a different level of community. And we know that.
As you alluded to, isolation is one of the greatest stressors on a human being or a family or a child. And so by making those connections, it's so important. So I think, you know, so many implications have come out of this discussion in terms of really trying to understand the cultural perspective. the family perspective, the perspective of the child, what's their experience. So I'm going to put some pressure on Otelia and Grant right now and ask them.
to give a couple of bullet points, maybe each of advice you would give to professionals and support personnel who are maybe not... Indigenous people themselves, but serve Indigenous communities. How can we open up that awareness? What are the steps? And maybe you could think about people who have taken that step as Grant. implied with the pediatrician who works with you. So why don't we start with Otelia? I think what I would want people to walk away with after today is...
Really incorporating the whole family and the child and the community. So holistic and. really culturally responsive supports is really important to me so that we can continue the work that we're doing and really see. the supports that we need being implemented for the children and the youth and that's really at the core for me children and youth and of course when they grow up
adults and parents aren't always going to be there. And that's one of my biggest worries, by the way. I would want society to be able to, to just. be accepting and embracing of differences. And so for me, it's just really important for people to do. to learn more about autism and differences, related differences. There's so many differences out there and learn from the perspectives of autistic individuals. Thank you.
And Otelia, thank you for that. And it also sounds like maybe on those first couple of consults or meetings where you're meeting the kiddo, meeting the family for the first time, there really should be. deep conversation, meaningful conversation about the cultural imperatives as well. Understanding autism, but also understanding the culture of the family seems vitally important in this case. Absolutely.
And Grant. Yeah, I think so. I'll keep it really practical as well. I think that one thing that I see within a lot of different spaces. i'll start with a story actually so i i was in i was in my community once and we were talking about um with elders about oral tradition and how a lot of our knowledges was were passed down through stories and through experiences and different perspectives. And I used to think that oral tradition meant who was telling the best story.
who was talking the most and who had the most airtime and who was able to share all their experiences. And I realized that after Neller sat me down, it's not about that whatsoever. Oral tradition is about listening. And who's the best listener in that space? And who is actually taking the time to really connect through listening? Because again, I see it all the time within the healthcare system or education or any, again, all these systems.
is there's a lack of listening that's happening. Unfortunately, that creates, again, a lot of divisiveness, a lot of disconnection, a lot of, I don't feel heard. I hear that from a lot of a lot of caregivers is I don't feel heard right now. And if you're not hearing me, I can't build a connection with you. If I can't build a connection with you, then whatever relationship we have is going to start or even end with in a very negative way. Right.
And so I think learning for everybody, including myself, is really learning how to listen and really being mindful of that. I think a lot of people think that they're good listeners. I think you should be critical of yourself when you're thinking about listening. And then the other piece to it, again, is this word I'll go back to, Waqtoktuin. And so Mio Waqtoktuin means good relationships.
And there's a responsibility built into this word again. And it's a responsibility that you have to maintain these relationships in a good and healthy way. And sometimes these relationships, they have, there might be conflict in them. There might be some sort of...
some problem that you have to figure out together. But at the end of the day, I think if you prioritize the relationship that you're trying to build with our families and our communities, you're going to get much better results. And unfortunately, what I see, and I see this. so much so within the research space at universities is that they are prioritizing what they need. My publications, my funding, my career. And then I'm going to go.
connect with the Indigenous community, and then it becomes about them still. And again, that's ego to me. And that is getting in the way of actually building good relationships. So for myself, I lead by example. I try and go always above and beyond. I try and meet families where they're at. I try and make sure that the families feel comfortable with what they're saying. And I make sure...
That again, the relationship is continually being built and I'm showing up again. Our language is verb based. And so it's about action and people want to see those actions. And that's how you build relationships. Really healthy relationships is by your actions. You can say whatever you want. To me, that's performative. That's theater. And so when I think about the actions you put behind that, that's what I'm really looking for. That's what those are the.
The real defining, I think, characteristics of somebody who's able to do really good work in our communities, and I've seen it with good allies and good people, is they're willing to put the actions behind their words consistently. So I really hope very deeply that our listeners are listening because what you both just shared from...
So many important experiences is something that we could all learn from. And we want to thank you so much for joining us. And good luck in all of your endeavors. Stay in touch. Let's keep moving forward. Thank you so much. Thanks.