The Power of Mentorship & Community: A Talk with the Neurodiversity Alliance

Jesse Sanchez, the Managing Director of Programs for the Neurodiversity Alliance, joins us to discuss the challenges that students with learning disabilities can face in the school setting, the importance of a shared, supportive community for neurodiverse students, and how to build self-knowledge, self-confidence, and self-advocacy skills for these individuals. 

The Neurodiversity Alliance is a nonprofit dedicated to building community, developing leadership skills, facilitating peer-to-peer support, and raising awareness for the 1 in 5 who learn differently. Learn more at thendalliance.org

Transcript

Lauren Clouser:

Welcome to The LDA podcast, a series by the Learning Disabilities Association of America. Our podcast is dedicated to exploring topics of interest to educators, individuals with learning disabilities, parents, and professionals to work towards our goal of creating a more equitable world. Hi, everyone. Welcome to the LDA podcast. I'm here today with Jesse Sanchez, the managing director of programs for the Neurodiversity Alliance, and he's going to tell us more about their programs. So, Jesse, thank you so much for being here.

Jesse Sanchez:

Thank you so much, Lauren. I'm really excited to be here. We're a big fan of the podcast and LDA.

Lauren Clouser:

That's great. We're so excited to have you and to talk about the Neurodiversity Alliance and the great work that they are doing in schools. So to start us off, could you tell us a little bit about the Neurodiversity Alliance? What's your mission, and how do you work towards achieving that mission?

Jesse Sanchez:

Yeah. Absolutely. So, at the Neurodiversity Alliance, we are a national student organization. We have a network of student clubs across the country, and we connect neurodivergent students, on their college and high school campuses, primarily to build community, to reduce stigma, to develop social emotional learning skills that are critically important for neurodivergent students, and also to go out into their communities and make an impact. 

There's a number of ways we do that. Sometimes it's by having our students go to local middle schools where they actually do our art based, group mentoring program for younger neurodivergent students. We also have a number of national leadership roles where we're supporting our neurodivergent students in really developing their leadership skills, which is also supporting them long term in terms of their transition from college to career. They can serve on our National Student Advisory Council.They can be public speaking ambassadors, work on social media, and get involved with our incredible alumni group.

Lauren Clouser:

That's all fantastic. So, how many Neurodiversity Alliance Clubs are currently active around the country?

Jesse Sanchez:

This fall, right now, we're around 90 clubs, which we're really excited about. And about a third of those 90 clubs actually have formal arrangements, with us and with a local school to go and do our youth mentoring program at local middle schools. So those are typically either a mixture of either a high school or a college club going to a local middle school to mentor younger neurodivergent students.

Lauren Clouser:

Fantastic. So can we talk a little bit broader about what are some of the challenges that neurodiverse students can face among their neurotypical peers and also in their day to day routines?

Jesse Sanchez:

Sure. So I know this audience is, if you're listening, you're probably very familiar with learning disabilities and and learning differences and then various different kinds of day to day challenges depending upon that student or your own kind of label or diagnosis or neurotype. But, you know, one of the things that comes up for me that we see the most, in terms of neurodivergent students struggling with their peers, is just social issues. Whether it's feeling like they don't belong, maybe even experiencing bullying, or just being kind of other than not fully, brought into the full with their peers because maybe they're struggling with, 1, their self esteem, or 2, maybe it's even, like, emotional, you know, outbursts and struggling with emotional regulation. I think of an example, actually, one of our, one of our sites, one of our clubs, We have a mentor, a young college man. He's actually a student athlete. Big you know, he's a very big, boisterous, active ADHDer, kind of like myself, the ADHDer. And he, in the last year, started mentoring a young boy at a local middle school through our program who also has ADHD.

And, one of the things I've learned from our stakeholders' teacher who's actually facilitating the chapter there for us, and she says that, you know, this particular student, he is known as, like to be a very lovable, kind, middle schooler, but he has, like, a whirlwind of energy. He's probably had struggles with dyspraxia as well. He's very, you know, kind of clumsy, tends to get into trouble, and he's had a lot of issues with emotional outbursts in the last couple years. And so that's really impacted his experience in terms of his day to day, his experience in the classroom, his experience with his peers. But in this last year, partnering with his mentor, who, you know, I think they're they're kind of kindred spirits, which we we we've we're pretty good at kind of matchmaking those kind of kindred spirits of neurodivergent, you know, near peer, mentors with mentees. That's what we do. It's just made a huge difference for him. The teacher who we partnered with was telling us a story about how, the student who in prior years would be running around the classroom, having a lot of difficulty participating with this particular mentor, she looked back one day in the art room setting, which is the group environment that we do our mentoring in.

And they were, sitting under a table together, just feverishly focused on their art project, and near the back of the classroom where they just kind of buddied up and quieted down and created this like fort environment. And, it just goes to show that a lot of these typical challenges, whether it's, social relationship with peers, emotional regulation, this has made a lasting shift in this student, having this older mentor who's also, you know, a fellow ADHDer or just building a bond and a relationship and creating the flexible way of working together, even if that means we're not sitting at a table, but we're sitting underneath, at the end of the classroom by ourselves.

Lauren Clouser:

Absolutely. Well, and you touched on this a little bit, but why is it so important to have a supportive community for neurodiverse students and especially the mentorship aspect too? That's really huge.

Jesse Sanchez:

Yeah. Supportive communities for neurodivergent folks are wildly critical. And, also, let me just say, you know, as I'm speaking about all of this, Lauren, I just wanna share that, like, I speak about this as someone myself who has ADHD, individual processing disorder, and that's, I have had my own experience from like, middle school up to now being an adult and having, up until more recently spent 10 years working in technology. You know, there's all these challenges. And the saving grace for me has been community, and it has been for so much of our students. Oftentimes, teachers almost by virtue of their job, like, it's hard for them to not hone in on and make visible what students can't do or where they're falling behind. Right? It's their job to try to, like, have students achieve in the classroom.

But rarely, not often enough, do those same students have a supportive community where they can hone in on what they can do and do really well, whether it's in the classroom or outside of the classroom. And that's just critical because, one of the things we're really focused on in our curriculum and our programming is to help these students develop confidence, self esteem, and self efficacy. And when you're not a neurotypical learner, it's easy to get beat down, right, in a traditional learning environment. So another story comes to mind for me, by getting these students out of the classroom and into a supportive community, they're able to, maybe for the first time, start to have a conversation with someone around what they're really good at and why that's important. One of our mentors was working with a young 8th grader, in recent years. And this young girl, she, she was described to me as being particularly shy and quiet. And the mentor was working with her on a project around just goal setting. That was the competency for this art project.

Let's talk about setting goals. And so the mentor asked this mentee, you know, this was an older college student who also had similar learning disabilities, and was also dyslexic. This particular mentee was also just was dyslexic. She said, well, let's think about some long term goals, say for example, graduating high school, right? That's kind of 5 years out for you. And right away, her mentee looked at her and she said, oh, I'm not graduating high school. She was like very heavy, shoulders dropped. And she was like, had such conviction in her voice. Just being a matter of fact, I can't conceivably imagine myself graduating high school.

And so her mentor said to her, she's like, well, why is that? And her mentee just shot right back at her. I can't read. I just can't read. And so her mentor, you know, dug in a little bit and was supportive. And she said, well, I understand you're not feeling confident about graduating high school because you can't read. Let's think about other goals, long term goals. And I know you love music. This particular mentee, this 8th grade girl, was really passionate about music and very talented at the cello, her mentor had learned.

And she said, how do you play the cello? And she says, oh, you know, I just use the instrument. Okay. The mentor said and she said, well, how do you go about, like, making music and understanding what notes to play? And she goes, I read the notes. Right? I read the music. And the mentor said to her, "So you can read, actually. You can read music.” And the mentee instantly, like, looked at her. Her energy shifted.

Her eyes opened wide, her face lit up, and she was like, oh, yeah, no one had ever kind of focused on that for her, the idea that she can read, she can do something well, that she can excel in something she really loves and is passionate about. And that was just the first moment of building up that...some brick of self esteem and self efficacy, which really shifted that student, and kind of propelled her, and their relationship in that supportive community. So having these supportive communities where neurodivergent folks are getting together is super critical. There's also just a bond that's so hard to replicate, when you've gone through this lived experience yourself. The normalizing experience is so powerful, and I can relate to that from my own experience, you know, with my involvement finding the Neurodiversity Alliance for the first time when I was a college student and was really deeply struggling. So yeah.

Lauren Clouser:

Yeah. That's huge. I mean, focusing on strengths is so important for students who are often told all of the things that they can't do well. So it's so huge to have that supportive community who's able to have that lived experience, that shared lived experience, and help to point these things out to them. So a little bit more on that note is why is it so important for neurodiverse students to develop these self confidence and self advocacy skills, and what are some ways that they can develop these skills?

Jesse Sanchez:

Yeah. This is a core pillar of what we've always been focused on in our organization is helping students understand...creating a space in a community where they can understand more about their own learning and performance needs and styles so that they can identify the accommodations that would best help them. And most importantly, where the rubber hits the road, they have to ask for them in order to get them. Right? Self advocacy has been huge. A lot of students, especially as we just we're just talking about students who may be struggling with self esteem, or self worth, sometimes there's, like, an assertiveness that's underdeveloped, that is really important for them to be able to get access to the accommodations so that they can demonstrate their abilities. So self advocacy is super critical, and some of the ways that we help students develop those skills is through our curriculum, and also through the near peer mentoring. I'll share my own story now. Here's the importance of self advocacy skills. You know, for me, as someone who was Chicano, Latino, first in my family to graduate from high school, neurodivergent, when I transferred to my 4 year university and I moved away from home for the first time, and like a lot of freshmen in college, you know, do, a lot of my scaffolding and support that helped me be successful up to that point all went away.

And I needed to learn for the first time a couple things. I really needed to relearn the criticality of my accommodations, and I needed to have the desire, the motivation, and the skills to self advocate to use those accommodations. Going away to college, no one had ever told me, Lauren, that I had ADHD, that I had learning differences. Even though I had gone through a pretty good public K through 12 system where I received accommodations and had an IEP, the entire social emotional development component was totally missing and lacking. Just general awareness. Right? And, particularly for college students, you know, this is a time where if you're going to use accommodations, it's on you. You need to actually go to your disability service center. You need to make arrangements for yourself.

There's no hand holding that happens in the K through 12 system. But even more so because the neurodivergent identity formation was so lacking, the conversation was so lacking in my life. And as a young adult, I was very much exploring, what am I capable of? You know, I transferred to a very competitive university in California, UC Berkeley. And in that competitive environment with my peers, I kind of wondered, like, if I especially as a first generation student, if I deserve to be here, why am I using these accommodations? Should I be using these accommodations? There's almost like an internalized stigma around them because the social emotional component had never been discussed or developed within. And so my 2nd semester at Cal, I actually decided on my own volition that I would distance myself from the disability resource center. I would not use any accommodations. And it came from this internalized place of neurodivergent stigma, of lack of awareness that a lot of folks struggle with. And it was this idea of I should be able to do this without these special accommodations.

Now let me just tell what the result of that was. Very quickly, my grades plummeted. Very quickly in association with that, my anxiety skyrocketed. Right? And that persisted long enough to start to grow into depression. And this is not an uncommon pattern that we see for neurodivergent students. Their learning disability is kind of the origin or fountain point for a lot of difficulty with mental health, which, you know, gen z is absolutely struggling with. It's a huge crisis in our society right now. And during that semester, I happened to get an email from my disability service office about the opportunity to start a chapter of the Neurodiversity Alliance, with its Eye to Eye youth mentoring program associated with the ND Alliance.

And I thought I probably need this as much as these younger students in the Berkeley community we'd be mentoring would benefit from this. I need this. Right? I need to engage with the community, explore my neurodivergent identity. And that set me on this journey of deciding to go on my own volition and ask for accommodations, re-engage with my disability resource center, leverage all the resources that were available to me, having them introduce me to our university health center on campus where I was able to do my first basically, young adult clinical diagnostic experience for ADHD. And to go through that experience at the same time that I had been building a community of peers on campus who were going through the same thing, and we were getting out of our bubble and out into the community to help younger people. It was really the magic that I think gave me honestly a pride around self advocating, and honed those skills by forcing me to teach others how to do them and why they were important.

Lauren Clouser:

Absolutely. So it sounds like a lot of self knowledge is what eventually led to your self advocacy and your self confidence.

Jesse Sanchez:

Oh, yeah. I was gonna say it's definitely that self knowledge combined with being around other people who have the same same lived experience and normalizing that it's that with one another. You know? Normalizing that it's okay to use accommodations. Normalizing that it's okay to have ADHD. Normalizing that all of that is true. And, yes, we belong here, you know, on our college campus together. We belong here in these leadership roles, as young students, impacting our community.

Lauren Clouser:

Absolutely. Well, I'm so grateful that you shared your story as well. That internal stigma about accessing accommodations in college is so common. A lot of students just going to college for the first time won't even disclose a learning disability. So I think we really just need to give them credit where credit is due. That it's difficult to ask for accommodations, but it doesn't make you any less deserving of being on campus. So I wanted to talk a little bit more about the Neurodiversity Alliance. Could you tell us a little bit about what a typical club meeting or gathering looks like?

Jesse Sanchez:

Yeah. Absolutely. You know, it varies so much from club to club around the country. You know, we have a chapter this year that is at a very large community college in Texas with 75 students. We have a chapter at a local public high school. And the beautiful thing about our clubs is they're student run. Right? We provide a platform. We provide a lot of resources and digital tool kits and flyers and virtual events for all these students, but it's an opportunity for them to really own and build their own community that's relevant at their local level.

You know, what it looks like at a high school in Texas is very different than maybe what it looks like on campus at Yale, for example. Some typical events, though, are things like students doing panels together to raise awareness in their local community, on their campus, for neurodivergent students. They may be speaking to a group of parents, teachers, and fellow peers. Maybe later that year, they're doing a film screening together, and they're just sitting together and they're having an ice cream social, you know, as part of that. Or they're tabling on campus and handing out buttons that say, you know, like ADHD Proud To Be or, you know, a Proud Dyslexic Thinker. And they're, you know, opening up that conversation for other students on their campus to self identify and wear that as the badge of honor on their hoodie or on their backpack. 

These awareness raising campaigns are something that we organize 3 times a year. Actually, coming up in October in a week, we're kicking off our strikeout the stigma month campaign as part of LD awareness month. So we're handing out tool kits to all of our students right now, to do that. Sometimes students are just getting together and doing study groups, you know, on a college campus.

Lauren Clouser:

That's great. It's great that it's student run and that it can really be what the school community needs. It's able to be adapted that way. So what are some examples of a Neurodiversity Alliance Club making an impact on its school?

Jesse Sanchez:

Yeah. Happy to share. You know, one example I mean, it can vary so much. It could be as small as I'm thinking of you know, we have a student, because one of the programs that we have that our clubs can do is to go into their local community and to mentor local middle school students. We're now having been around for actually 25 years, Lauren. We have some middle school mentees with learning disabilities and differences who are now in college and are actually starting clubs on their college campus, and really bringing it full circle and transforming a a a campus environment where there's maybe minimal to no disability services or awareness on campus, and they're bringing that from the ground up. We're putting out these change makers. Many years ago, we had a club at a liberal arts college in upstate New York where the student leaders, they actually had the disability resource office facility relocated so that it was no longer off campus away from their class buildings and their student center and relocated onto the center of campus by advocating to their administration and organizing themselves and articulating how important it was and how it made them feel to basically be symbolically and oftentimes pushed out of the outskirts of their campus community when it was time for them to go and get resources and services.

Lauren Clouser:

Wow. That's so huge because it's already so hard to ask for accommodations. So that's such a huge and important impact. And it has to be so cool to see the full circle effect of the middle school students turning around, becoming advocates, becoming mentors, starting their own clubs. That has to be really fulfilling.

Jesse Sanchez:

That is particularly special. And, you know, it really doesn't end. This organization, now that we're 25 years, we're at a point where we're actually making inroads in supporting students with learning disabilities and who are neurodivergent almost, like, through the the entire life cycle, right, from being a middle schooler who's having their life transformed by a mentor in their after school art room program, to being a high schooler who is starting an ND Alliance club. And, you know, one of our students actually was able to advocate at the superintendent level for their entire district because of the discrimination that they experience on their campus to have ND Alliance Clubs brought to all the high schools in that district, to a college student who is, you know, studying special education, and starting an ND Alliance Club, mentoring middle school students, and then graduating to go on and be a special educator. Or we have one student now who is the superintendent for all of the the KIPP charter school network in Washington, DC. And so with these alumni, we're now helping, you know, someone who may have started out as a middle schooler and is now getting support and, you know, having a thriving career, because of the alumni base that we've developed.

Lauren Clouser:

That's fantastic. Well, and as we know, learning disabilities and ADHD, they stay with you throughout your life. They're lifelong. So it's great that the Neurodiversity Alliance has support in different stages for each step of the way. The last question I wanted to ask is for listeners who are tuning in and wondering how they can start their own club or how they can get involved. What would you say to them?

Jesse Sanchez:

We would love to have you get involved. We would love to support you. Please check us out, at thendalliance.org. Check out our website. There is an opportunity for you to fill out a contact us form, whether you are a student, whether you are an educator, whether you are a parent, you can get connected with us on our website, and we would actually have someone be able to talk about what the best best pathway is for you to get involved. And you can also follow us on all of our social media platforms, including LinkedIn, Instagram, YouTube, Facebook. And we actually are now developing our own niche online community and mobile app. And so if you go to our website, you join our community, you'll get an automated email.

If you click on that email, it will allow you to log in to our online download, our mobile app, and join our online community. So you can actually have a safe space just focused for theneurodivergent community.

Lauren Clouser:

Well, that's very exciting. And we are so happy to have you on and to highlight the great work that the Neurodiversity Alliance is doing. So, Jesse, thank you so much for taking the time to talk with us.

Jesse Sanchez:

Thank you, Lauren. It's a joy, and we appreciate all the work that you're doing at LDA and hope to be back on again.

Lauren Clouser:

Absolutely. Thank you for listening to the LDA podcast. To learn more about LDA and to get valuable resources and support, visit ldaamerica.org.