Where Are We in the Neurodiversity Movement? with Marcus Soutra

Debbie:

Hey Marcus, welcome back to the podcast.

Marcus Soutra:

Thank you for having me, excited to be here.

Debbie:

Yeah, it’s been a couple years. You are a return guest. So congratulations on that. I don’t know if that’s something to be excited about, but I’m excited because we are going to have kind of a just a general conversation about the state of the neurodiversity movement. You’ve been in this space for a really long time, and I’m very curious to see what we get into today. But as a way of introducing yourself, I read your bio already, but could you tell us a little bit more about your why in the world and what you’re up to these days?

Marcus Soutra:

Yeah, sure. So thank you so much for having me. I love returning, returning champion, we’ll say today. But no, it’s so great to be with you and have this conversation. And yeah, so myself, I’m neurodivergent. I’m dyslexic. I have ADHD. It’s been a part of my identity since I was a very young person. I’ve been the president and co -founder of Eye to Eye for almost the last 20 years. We’re an organization that supports the neurodiverse community in various ways. And I think my why has always been about building community for neurodiverse individuals, especially young people. And I’ve just seen the power that a group of individuals, especially those that are invisible in so many ways, when they’re brought together and have a community, that they can make their lives better for themselves and can change the world for their fellow neurodivergent people around them and their allies. So I think that’s really why I show up to this work every single day and it’s what’s driven me for the last 20 plus years.

Debbie:

Yeah, I love that word community. Obviously, Tilt Parenting, I really launched as a community that was kind of one of the core foundational aspects of what tilts about. And I was mentioning before I hit record, I interviewed Dr. Mel Houser this morning who runs this incredible organization in Vermont called All Brains Belong and she’s supporting neurodivergent people and accessing affirming health care but it’s all about community. Community is such a cornerstone of this work that we’re doing. So I just love that that has even come up as a theme as we get started. But here, I was just thinking before we talked. The very first time that we met, I think in person was at a book event for Differently Wired at the Barnes and Noble on the Upper East Side, right? You, me, Scott Barry Kaufman, we had a really interesting facilitated conversation about neurodivergence. And I have to just say that was 2018, six years ago, I already want to edit the heck out of that book. Like I look at that book and I’m like, it’s changed so much. The language has changed. There are concepts that I now feel are integral to neurodivergence that I didn’t, that weren’t even being discussed, that I wasn’t aware of. And you just mentioned you’ve been doing this work for you know 20 years with Eye to Eye so i’d love it if you could kind of talk a little bit about your reflections over the past 20 years of doing this work how you’ve seen things change.

Marcus Soutra:

Yeah, no, it’s really been amazing. I think language is one of the most key indicators of the change, right? And because it’s, you know, and change not only in the way neurodivergent individuals talk about themselves, but the way the world talks about us. And I think that sometimes we usually have our own language first, and then the rest of the world starts to parrot back to say it back to us. And so when I first started off in this work and Eye to Eye

you know, as an organization, its programming reflected this too. When we started off, it was really all students who identified, and we really want to use the word diagnosed much more often back then, was dyslexia and ADHD. That was the primary diagnosis that people were coming to Eye to Eye with, and most of what the students we were working with and how they spoke about themselves.

And then we started seeing this language around learning differences kind of coming into the space and the way people were talking about it. And I remember there was a lot of debate, learning disability, learning difference within our community and whether or not what those words meant. And some people were mad about the loss of the word disability because that was the rights, the accommodations that allowed students like myself to be successful in school. But a difference was a better way of framing it and explaining it and understanding it for the people around us. And so I remember having a lot of conflict within our community around which word better suited for Eye to Eye at the movement at the time. So we didn’t pick a side I remember the time we were like you decide how you want to be identified you decide how you want to talk about this And then we saw language around learning and attention issues coming out we saw You know then but really in the last I think probably since around the time we had that conversation in that Barnes and Noble, neurodiversity and neurodivergence became sort of to become the language that people were using. You know, I know that phrase was coined by Judy Singer about 15 years ago now and really started off in the autism community. But now has become this umbrella term where people with dyslexia and ADHD, anxiety, autism, who are using that term to identify and to explain themselves and how they operate in the world. I think that that is something that’s most exciting right now within the movement is that there is this kind of coming together and this larger tent or umbrella of these people who have maybe very, very different experiences in their day to day and how their disability or their difference affects them. But we all kind of want the same thing. We all want to be seen. We all want to be heard. We want to be valued. We all want our rights. We all want to be active participants in society and be successful and we want others to love across difference and see us for who we are and our gifts. And I think that that’s common throughout the entire community. And I just see that kind of coalescing happening, which is really exciting.

Debbie:

Yeah, I couldn’t agree more. And I think when I launched Tilt, I used the language of differently wired, which I still use. But really, what I was trying to do through that is say, we’re all in this together, and we have these common experiences. And I wanted a term that was more positive or didn’t at least have negative or medicalized connotations. So I love neurodivergence now. So I kind of interchange both differently wired and neurodivergence. I’m curious, you mentioned differences in disability and I feel like disability is coming back now as a word that so many neurodivergent people are really claiming again and saying, actually, it is a disability. We’re disabled by our environments and disability isn’t a bad thing. I’m just curious about your thoughts on that.

Marcus Soutra:

Yeah, I completely agree. I mean, if you, we go back in time, you and I get in the door, the DeLorean and hang out with Marcus in sixth grade. I was definitely disabled in that environment. That was not a difference. I couldn’t read. I couldn’t sit still. I was getting in trouble. I was getting my peers in trouble. I was really struggling. So to call it anything other than a disability, you know, and not be able to allow me to get my rights really kind of undermined the experience that I was having. The environment was, was, was the disabling factor in that that was what was causing my disability. But that’s really much better suited for the word for it. And I think that there is an exciting piece around people owning that word in a really incredible way, which when I was in college, there was, and first starting out with Eye to Eye, person first language was like the rule. You had to always use person-first language. And a lot of people still subscribe to that. But when I talk to the young people at Eye to Eye, they use identity first language and they talk about their disability as part of their identity and aspect of who they are. And they don’t care about the person-first language to the same degree in which we did 10, 15, 20 years ago because they want to own this as a part of who they are. And so those kinds of shifts I think are really, are really fascinating. Yeah.

Debbie:

They are, they’re really indicative to me of how things are really shifting. Do you mind me asking about you personally, like how your own identity, you know, I’ll just say you’re the first person who really used that language of identified instead of diagnosed. And that has stuck with me ever since. And I probably mentioned you on podcasts, you know, every couple of episodes, because that’s a big difference to be diagnosed versus be identified as having this learning difference or disability. So I’m just curious how your own experience of your own neurodivergence has changed over the past 20 years.

Marcus Soutra:

Yeah, no. And I think like, you know, I am, I’m, I just turned 40. So I am part of the millennial generation that was early, you know, receiving accommodations and Ritalin and all of those types of ADHD was the big topic of conversation. And back then, and for very, very long, it was always thought of as a diagnosis. You know, that was the only language that I would have approached it with or anybody around me. And then as I became an adult and left that social construction that is school and went out into the world, I realized how it showed up as a part of my identity. Cause it wasn’t just about how I was as a learner. It was about who I was as an individual and, you know, everything from how I order a meal at a restaurant by pointing to the words, I don’t know how to read out loud or to like how I communicate and connect with people who’ve had this similar experience. All of those things are connected to this aspect of my identity and I think that like, I got that lesson from the young people that we worked with, you know, I remember one time a kid, this was probably like 12, 15 years ago when I was kind of going through that, that change of going from the diagnosis language to the identified language. And he said to me, he said, I don’t read with my eyes. I read with my ears. And he was a young kid with dyslexia and that was just how he articulated his neurodivergence and that’s how he understood it. It was like, that’s just how my brain works. And he was owning it with such pride. And it just made me rethink how I talked about my, as opposed to saying like, I have a print disability or I have dyslexia and therefore I need to use audio books. He was, you know, hey, I read with my ears. And that was just part of who he was.

Debbie:

So I’d love to dive a little bit more into this idea of stigma because, you know, the story that you just shared before we went to break in part is speaking to the way that people would, the language that they would use to describe what’s challenging to kind of either protect themselves or to maintain a certain, I don’t even know what the right word is, but to maintain a reputation or whatever it is to look good in certain environments, I would think. And I’m just going to give you a personal example. I have just recently, when I give talks, when I give a keynote or something like that, I’m allowing myself without fear of judgment or shame to actually refer to my notes because I cannot keep track of things if I have to have it all in my head. I have to have it written down. I used to make that mean that I wasn’t, I shouldn’t be doing this. I’m not good enough. If I was a better speaker, I’d be off my notes. Like I had all of these stories and now I just tell people when I start just so you know, I’m accommodating myself because I, I need, I will lose track if I don’t have this in front of me. So that to me is, is kind of saying, I don’t care about the stigma of whatever. I’m just kind of leaning into who I am and what I need. So that was kind of, I don’t know if that example makes sense to you, but I’d love to know what you see in the way that stigma has evolved. Do you feel like there’s less stigma? Do kids just decide it doesn’t matter what other people think? Are they just ignoring that? Are they defying it?

Marcus Soutra:

Yeah, no, I mean, I think the identity aspect of it has played a lot into the way young people view the stigma, you know, and I think that like those that are, you know, the way you were just like sharing this is an aspect of who I am, this is how I learn or I read with my ears or whatever it might be, like that’s you’re incorporating your learn your difference or neurodivergence into your identity as a part of who you are and you’re sharing it out. You can share it out in the context of a formal label, right? And say like, this is how I identify, or you can just say, this is how I learn best. This is how I receive information. This is how I can be successful. And I think that, like the gift of being an ND individual is that you, you’re kind of on a constant exploration of that more so I think than other individuals, right? You are, you are like, I say, you know, our students are like self -actualized learners. Like they’re always in preserve, like how they learn, how their brain works. They’re thinking about that from a really, really young age which is something that is kind of the gift of being neurodivergent. Cause I know a lot of people don’t think about how they learn as much as how they think about, you know, I’d learn so I can get the A, you know, whereas neurodivergent students constantly have to be thinking about how I can operate within this environment that wasn’t designed for me. So I have to learn more about myself in that situation. I still think, I’d love to say that the stigma is all gone and that’s not an issue anymore. I still think it’s very prevalent, especially in certain environments. Some of the more high-stressed academic environments especially, where there’s much more of a like, an unwillingness to talk about these types of subjects, or at least not a willingness to talk about them from any kind of positive lens. But if you go on TikTok or Instagram for three minutes, you’ll see millions of young people sharing their stories and talking about their neurodivergence in prideful ways. And so I think it’s probably more the adults who have the problem and we’re just not listening enough to the kids.

Debbie:

Yeah, I would agree with that. That was one of my questions. I even noticed this with the parents that I speak with in terms of the generation. So I’m in my mid -50s at this point, and I just said that publicly. But I’m in this one generation. 

Marcus Soutra:

You just ran a half marathon. You just ran a half marathon now. So, you know, yes.

Debbie:

I did. Thank you for pointing that out. And listeners, Marcus and I met up. We both ran the Brooklyn Half Marathon and met up on Coney Island with David Flink, which was awesome. But I noticed this in my generation, and certainly one of the reasons why I created Tilt was because there was so much kind of fear and anxiety about what does this mean? And it was so hard to find good resources. And a lot of my work is helping parents get comfortable with their own internalized ableism or just recognize it and kind of do their own work so that they can unpack any beliefs they might have about neurodivergence so they can really show up for their kids. And I’m starting to notice that younger parents, they’re not necessarily grappling with the same kind of fear in that way. They have other fears for sure, other stuff going on that they’re trying to figure out and overwhelm and all of that stuff. But I’m just noticing even in parenting, like you mentioned a lot of it’s our own stuff. The stigma is really a generational thing and I would totally agree with that. Do you have any experience with that in the families you work with?

Marcus Soutra:

Yeah, yeah, no, definitely. I mean, that literally just jumps to my text message that I received was this Thursday on Monday of this week from a friend of mine who’s a little older than me. He’s in his mid 40s. So I would say he’s like, you know, Gen X just on the cusp of Gen X, right? And didn’t maybe necessarily grow up with this conversation as much as even I did in just those few years made a difference. And he said, you know, it’s looking like our son is, you know, our son, this guy identified with ADHD. And so of course the first thing my friends do when their kids get identified is they text me and he texted me and said, he said, my gosh, you know, I was looking over all of the, you know, attributes of someone with ADHD and I, and this is my friend speaking and they’re all the attributes that I see so much in my son that are similar to me. Do you think I have ADHD too? And I said, wait, you don’t know that you have ADHD? Like, you know, we’ve been friends for like 15 years. I was like, Wait a second, like, are we just finding this out today? ‘Cause I just always assumed that he kind of knew that we just didn’t really like talk about it as much. And so I didn’t push it. or that he, you know, never been, he never got the luxury of being identified. And so he now is getting identified via his son, you know, it’s hereditary in the reverse way, right? He’s going through this experience of looking at his son and being like, wow, this is so similar to who I am.

All these attributes of ADHD are a lot of the attributes I’ve seen my son good, bad, and indifferent, and reaching out to us. So my wife and I were kind of shocked to get that text message from him. And we’re like, my gosh, of course, man. And we thought you knew that about yourself. So yeah, I’m seeing that, I think, with like, and I think that to add to that a little bit, I think that it’s gonna be interesting to see how the millennial generation and then Gen Z raise their kids with this knowledge and with this experience and conversation. Because it didn’t happen in my boomer parents. It was not discussed at all. And so to see the difference in how we’ll kind of be able to, I’ve heard that story about Eye to Eye alumni. You know, we have a lot of alumni who have kids now who are getting identified and they said, you know, I changed the way I’m going to raise my kid because I’m handing down a different type. The trauma is done. We are no longer unpacking this. It’s done here. It ends here. And we’re going to raise our kid differently as a result of IDA.

Debbie:

Yeah, that’s so cool. It is exciting. And yeah, I think that’s like an occupational hazard of the work that we do. Like it’s, you know, I see neural divergence everywhere. Like I’m like, like I’m, you know, just in people I interact with, I’m like, this is going on there. This is going on there. But of course, you know, it’s not always appropriate or ever appropriate to give unsolicited identifications, I would say.

Marcus Soutra:

Yeah, but clearly with my friend here, I should have said something about this because we’ve been friends for way too long and he knows what I do for a living. So it was, yeah, we should have had this conversation at some point.

Debbie:

Right. That’s funny. I want to ask one other question about identity and belonging. You know, we were talking a lot about identity and young people’s relationship with that. And also, you know, you and I went back and forth in planning this conversation and you said there’s also a lot to unpack there, especially the role that privilege plays in one’s ability to embrace this aspect of one’s identity. And I’m wondering if you could unpack that a little bit for us. What did you mean when you said that?

Marcus Soutra:

Yeah, so I come to this work with a lot of privilege. I’m a cisgendered white male, grew up middle class, had a father who was an educator, and I was kind of the picture perfect, whatever I was, central casting for what a neurodiverse kid would look like back then. I was fidgety, I was bright, but I was struggling in school. And I had parents who were willing to fight to get me and able to fight to get me the accommodations that I needed. And I think that like, you know, that is not the case for Black and Brown kids in this country at that time period, especially, and especially from anybody who came from an under -resourced household and didn’t have the knowledge, didn’t have the ability, didn’t have the access to be able to fight or didn’t go to the schools that were able to get those students what they needed. And we see that nationally, you know, with the diagnosis rates. And I’ve often said that, you know, the label is a luxury.

Because the label gets you access to the extra time to the extra supports to to the identity You really can’t have access to it without that Our experience is very gated Even as it is, you know to this day, you know students have to get retested every several years There is a actual literal cost on that of thousands of dollars I’ve called it like the ND tax, you know where like students have to re up their neurodiversity to get their accommodations and supports that they need in school. And so I think that one of the things that has made this conversation harder is that it has been an element of privilege to enter the space. And I think you see that reflected within the field. You know, you see that still to this day with a lot when you go to a conference around this issue, when you go to a talk on these issues, you know, you see a lot of still white parents who are addressing these issues with their kids. And I think that the role of privilege plays a huge factor in that.

Debbie:

Yeah. Yeah, absolutely. And with both ADHD and autism too, there’s such a prevalence of late identification, and that really can take a toll. So many kids don’t, when they’re identified late, they not only don’t get those services, but then they also might just build up more and more trauma and negative experiences because of the way they show up being misinterpreted and misunderstood.

Marcus Soutra:

Yeah, and you see the same thing with girls, right? You know, over the years, Eye to Eye has always had girls coming to Eye to Eye to become volunteers, mentors, and leaders in the program who have been identified 17, 18, 19 years old, right at the end of high school. And because they just experienced their ADHD, their dyslexia, their autism in a different way, and it didn’t show up in those earlier ways in the communities they were in, and they didn’t get that identification. And there’s been lots of studies now that have been done about the kind of girls specifically being identified later in life. Because I think we all think of, or used to think of, the fidgety boy that can’t sit still who’s also bright, let’s get him some services and supports. And maybe that girl who’s staring out the window, who’s not being able to focus and pay attention and the same, it’s showing up in a different way, isn’t afforded those same privileges and rights.

Debbie:

Right. Yeah. Yeah. So true. Okay, so in terms of where we are today, we’ve talked about where we’ve come and what we’ve noticed over the past 20 years. You know, if we were to kind of look at the where we are in this moment as we’re recording this, where do you see kind of the biggest, I guess, leaks like in the raft, you know, we’re still kind of the biggest areas of challenge that that you see and that you have energy kind of pulling you towards.

Marcus Soutra:

Wow. Yeah, there’s a few things. I mean, I still think that the numbers around students getting identified and getting services is way too low. And I think that there are so many kids out there who are going through school without the supports that they need to be successful. So I think like, you know, we need to be doing more to invest in early identification for young people so that we’re, you’re not 17 years old and we’re finding out that you’re dyslexic or finding out that you’re on the spectrum that those kinds of we need to understand that about young people much earlier on and and I think because that gives you so many opportunities. I think the next thing is really around the way we tell stories whether it’s telling stories in the media whether it’s how we tell stories to each other. I think that there’s not enough stories that share this experience for families to be able to connect with you know. Often the stories around disabilities, neurodivergence, or these kind of outlier, huge stories. I used to call them the super speds when I was a kid. I was like Tom Cruise and Richard Branson and these types of individuals. But I think that what we need more of is the everyday families and people who are living this experience and hearing their stories. And I think that one of the things we’ve seen in the gay rights movement and the LGBTQ movement has been the power of that. And I think that that’s something that has really transformed the way the community has made such strides in that movement. And there’s a lot of similarities that I see between LGBTQ movement and kind of where neurodiversity sits right now. We’re just about 20, 25 years behind in terms of the conversation.

Debbie:

And it’s funny, you know, you mentioned Richard Branson, I do feel like there’s like this half dozen, like high profile people that get mentioned in every talk and every article when we’re talking about neurodivergence. I just saw on Instagram a reel with gosh, what is his name? Right. With Ryan Reynolds and Hugh Jackman, I guess, Ryan, Ryan, Ryan Reynolds has anxiety, which I didn’t know. And they were having a frank conversation about that. And so I do think those things can be powerful and helpful when people talk openly about them. But I love this idea of having more kinds of everyday people share their stories. And yeah, that gets me excited to think about how we can facilitate more of that. You mentioned early identification and kids like investing in that. Like, do you have ideas about what that looks like? Is this policy change? What needs to happen in order for early identification to be available for more people?

Marcus Soutra:

Wow, that’s a huge thing to unpack. But I think that like, I mean, first of all, I think the cost needs to be reduced. I think that it needs to be a conversation that’s happening with pediatricians and with educators early on in elementary and even before elementary and pre-K conversations with young people. And it needs to be something that is, that the stigma is taken out of, that it’s not this scary conversation, but it’s something that people can easily access and be able to say, okay, I think there’s something going on with my kid. I can easily have that conversation. I can get the advice that I need and I can get them identified so that we can help understand my child better as a learner and as an individual and then use that knowledge to help them go through school and be successful. And I think that, you know, we’re still dealing with a place where it’s, there’s a lot of hoops to jump through to get to that place where you’re, there’s years of putting it off. There’s years of. There’s costs associated with it that are just insurmountable for some families. And then there’s the stigma that’s associated with it, that your child is going to be now labeled as one of those kids, and that’s going to carry with them for a very long time and negatively impact them and the rest of their life. So it’s about access and it’s about the stigma.

Debbie:

Yeah, and I have a question which I’m going to try to ask this in a way that makes sense. If it doesn’t, we’ll take it out of the interview. But I’m just wondering if you’re noticing, because during COVID, there was this kind of increase in TikTok, a lot of social media about people kind of embracing their neural divergence or self -identifying … it became kind of a big thing, right? And I’m also just noticing there’s a book that’s come out recently, which I’m not going to name because I don’t want to bring any more attention to it, but that really is kind of pushing back on this idea that we shouldn’t be giving kids all of this support or encouraging them to talk about their feelings or therapy is really the problem, right? And so I’m just wondering if you personally have noticed any sort of backlash against the fact that a lot of people have in recent years since COVID maybe been self -identifying as being autistic or having ADHD and other learning disabilities. Do you notice anything there?

Marcus Soutra:

Yeah, I have noticed that. I think that I’ll take the TikTok kind of conversation in two ways. I think one, the positive side of it is more people are talking about it, right? More people are sharing their stories. More people are getting out there and normalizing it. Goes back to what I was saying before about regular people sharing their stories. There is a whole field of neurodiverse influencers that didn’t exist five years ago, right? That’s a whole different, that’s a whole genre within social media. So I’m glad that that conversation has happened. At the same time, I want to make sure people are getting quality information, right? The people are getting the right information and the right supports. Yeah, if someone wants to identify as neurodiverse, welcome to the club. I’m excited to have you. Like we’ll send you your membership card very soon and your t -shirt. But if someone is, you know, not really identified, doesn’t really identify with those or doesn’t really have one of those, it doesn’t really have a neurodivergence, it can do harm to those around them that actually do have that experience.

You know, if you’re just, if you, I hear comments all the time, I’m just being a little ADHD or I’m having a dyslexic moment or, you know, those types of things that actually play into the stigma. and, and, and it’s, you know, used as an excuse or as a crutch and how you approach it, as opposed to saying like, I found this video online. I really connected with it. I feel seen by it. I’m going to go talk to professionals and see if there’s something here that could really, I can get some supports around to make sure that I’m doing better in school or in work or in life. And so I think that like, I like the noise, because I think that that’s bringing attention to the space and that’s bringing people under the tent. But I worry when I see videos and I’m like, this isn’t good information, or this isn’t the right type of message we want to be hearing. And so that’s why I ask people to look towards the professional organizations or people like yourself who actually like are leaders in these fields, is where they get their knowledge, as opposed to like, and I think this is happening in other subjects too with the podcast kind of world and the social media world. People are just kind of saying things and there’s not really experts in the space.

Debbie:

Yes, and we could expand that to many other discourses at the moment, but we won’t do that. We’re not going to go there for this conversation. So I’m curious to know for you, where are you personally excited to make waves and kind of continue on in this movement?

Marcus Soutra:

Yes, definitely. Well, I’m leaving Eye to Eye at the end of this month, at the end of June, and transitioning out of the organization after 18 years. I’ve had the most incredible job. I’ve just absolutely been so fortunate and it’s time for a new challenge and a new way to work within this movement. So I personally am going to be, I’m going to be launching a consulting firm, you know, For the Good Consulting, forthegoodconsulting.com and working with organizations because I’m seeing so many organizations who are approaching young people in specific ways or in other ways who need to understand neurodivergence that they want to solve the problem they’re trying to solve. You know, when I think about organizations out there who are trying to solve, you know, the school to prison pipeline issue, right, that’s a big one, but there’s lots of like lots of less heavy ones, but that’s when I think that’s really, really important for us to think about what is the intersection of identities that are, you know, for students who are in the juvenile system, right? You have students who are usually students of color who come from lower, low income households who have learning disabilities or are neurodivergent. That is what makes up the majority of that population. I think it’s over 60 % of the young people in Rikers Island are dyslexic. So just working with other organizations to help them understand the intersection of these identities. And if we’re really going to solve some of the most major problems in our society, we have to think about this as an element of that. So I’m excited to continue to be an advocate and always be involved with eye to eye in many ways, but doing it in a way that, you know, hopefully can, can bring this message in my knowledge to more organizations who maybe neurodiversity is not their focus, but it really is an element of what they’re doing and an element of the problem they’re trying to solve.

Debbie:

Yeah, that is so exciting and important. And I look forward to seeing what you do through your new consulting, through Feel the Good Consulting. No, sorry, let me say that again. my God, see, this is what happens. Now my brain’s going offline. Okay. And I look forward to seeing what you do through For the Good Consulting. It’s very cool. I’ll have a link in the show notes page too for people who want to check that out. So my last question for you is, for listeners who have been just hanging out with us for this conversation and considering all these ideas around the movement, what ideas do you have for how parents listeners of the show can be the most effective in our day to day lives in pushing this movement forward? I mean, you mentioned earlier, just everyday people sharing our stories as a way to reduce stigma, but any other thoughts on what we can do?

Marcus Soutra:

Yeah, I mean, I think I’ll get one that’s like in the house and maybe one on the ground and one in the air. So on the ground, I think it is like really making sure you’re thoughtfully supporting your child to be their own self advocate. I think that is like if you can leave high school, middle school, if you can leave these spaces and go into the next environment and be able to articulate how your neurodivergence affects you and what you need to be successful and you can do it from a place of pride, you’re gonna win. Like you’re just, your child’s gonna win. And that is one of those things that so few kids get that experience. And that doesn’t happen overnight. And it doesn’t happen over even a year or two. It’s a slow process of getting a kid to go from you being their advocate to them being their advocate. So I think that’s one of the biggest pieces out there. And then I think also parents sharing their own stories with each other. I know there are so many moms who are listening to this and dads who are listening to this who are thinking they’re the only parent in their school that’s going through this, or they aren’t feeling comfortable ready to talk to another parent about this. So I think building that community within their own school is phenomenal. And I think that, I’ve heard stories about parents said to me, I have a WhatsApp group with all my ADHD moms, and we talk to each other and send each other advice, which is an amazing start, but I think that those types of communities of parents coming together is massive. You think about how there’s so many groups over the years that have changed the way, maybe a funny example, but mothers against drunk driving transformed drunk driving, right? In the way my generation experienced that issue. So I just think about the power of parents coming together to build their own community and put their own mask on, so to speak, and then putting someone else’s mask on when thinking about like boarding the plane.

Debbie:

Yeah, I love that. I mean, I do think that for every parent who, you know, even if you’re just advocating for your child with one teacher in that school, you are paving the way for the next kid the next year who has similar, like where everything that we’re doing matters, there’s a real ripple effect. So I appreciate that. So anything that we didn’t mention that you wanted to touch upon before we say goodbye?

Marcus Soutra:

I just think I’ll leave us with just some optimism. I think that like we know and next week I’m going down to Washington DC to be on Capitol Hill with a bunch of young people who are meeting with their members of representatives to advocate for policies like the rise act that would help ensure students have the accommodations that they need beyond high school on to college. so if you don’t know the rise act look up the Rise Act and get your member of congress to care about it.  And so I’m just inspired by the young people who keep taking up the banner and are continuing to do this work. And there are a lot of ways to get involved with this type of stuff. If you have a young person in your life, go to neurodiversityalliance.com, check out the website, get your young people involved. That could be a great way to not only build community for the young people, but eventually for the parents as well. Cause there’s a lot of young kids out there doing really cool work to advocate for themselves and each other. And yeah. Thank you for being such a great voice in this work.

Debbie:

Thank you. Same to you, Marcus. Thank you so much for this conversation. This is fun stuff to talk about and consider, and it inspires me. So I appreciate you and what you do. And maybe we’ll have you back for conversation number three, and we’ll have some big updates in both of our worlds.

Marcus Soutra:

Yeah, that would be great. Looking forward to it.