National Disability Radio

National Disability Radio: Alden’s AuDHD Journey

Listen Later

Alden Blevins, the newest host of National Disability Radio, has a personal journey with autism and ADHD that has shaped her perspective on disability rights and advocacy. Alden was misdiagnosed with anxiety and depression as a child, and did not receive the correct diagnosis of autism and ADHD until her late 20s. Alden describes her experience navigating the workplace and healthcare systems as an autistic individual, emphasizing the challenges of “passing” as neurotypical and the importance of self-accommodating.

We also discuss the evolving public perception and representation of autism, noting that while awareness has increased, the diversity of the autistic experience is often overlooked. When it comes to policy and advocacy, Alden highlights the need for greater autistic representation and input, as the perspectives of those with high support needs or who use augmentative communication are often left out of importangt onversations

To recharge and find joy, the PodSquad turns to their interests, particularly music and pop culture, which play an important role in ever important their self-advocate self-care regime.

To view or download the full transcript, click here.

Michelle Bishop:

How could we not talk about Taylor getting engaged and dropping a new album?

Stephanie Flynt McEben:

Yes. Oh my gosh.

Michelle Bishop:

Taylor, she understood the assignment and she was like, “The world needs me to bring them joy right now.”

Stephanie Flynt McEben:

Yes.

Alden Blevins:

Oh, absolutely. I’ve been totally enjoying some good escapism by entering into the Taylor verse, and that’s been helpful for my mental health as of late, so.

Michelle Bishop:

Maybe we should do our podcast.

Stephanie Flynt McEben:

Welcome to National Disability Radio.

Alden Blevins:

Let’s go ahead and do that. So I’m the newbie here in the mix today.

Stephanie Flynt McEben:

Yay.

Alden Blevins:

Yes. But I will welcome everybody to National Disability Radio and introduce myself and say that I am Alden Blevins. I am a new addition to the NDRN team. I started last year around November. Before that, I happened to work at the Virginia Protection and Advocacy organization, disAbility Law Center of Virginia for two years. So I have learned a lot from the PNAs in the disability community, and I’m super stoked to be here today.

Michelle Bishop:

Love it. Welcome.

Alden Blevins:

Yeah.

Michelle Bishop:

Stephanie, were you going to introduce yourself?

Stephanie Flynt McEben:

I was just going to say, Alden, we are super excited to have you as a producer and host. So yeah, we are super excited to have you with us on our pod squad team. But yeah, I’m Stephanie Flynt McEben and I am NDRN’s public policy analyst and I guess it’s one third now, one third of your podcast hosts.

Michelle Bishop:

One third, one third. I’m Michelle Bishop. I’m the manager for voter access and engagement, and I usually have to introduce myself first every single episode, so looking-

Alden Blevins:

Oh, wow. I didn’t mean to steal your thunder. I just wanted us to get into the mix.

Michelle Bishop:

And I know you’ve got hella professional experience, but also one of the things we highlight on National Disability Radio is also the lived experience of having a disability and why that is also as important and as valid and useful as the professional experience and data and that sort of thing.

Alden Blevins:

Absolutely. So I have my own experience with disabilities. I identify, as the kids say, AuDHD, meaning I both have autism and ADHD, and that has shaped so much about how I moved through the world. Other than that, some more lived experience I have is that I started my career out working in public education, which just happened to teach me a lot about the systems and the barriers that everyday people face. And in addition to my own lived experience with disability, my mom is also a power chair user. Sometimes she uses a walker. She uses various mobility aids. She’s had a disability for most of my life growing up, so while I bring my own perspective, I’ve also got a lot of experience with a different type of disability through my experiences growing up with my mom.

Michelle Bishop:

I’m sorry, did you call it AuDHD? I’ve never heard that before. That’s amazing.

Alden Blevins:

Yes. AuDHD. A-U-D-H-D.

Michelle Bishop:

Yes. I love it, I love it. We’re already learning new things. This episode is about you as our new pro host. So back us all the way up. Let’s let our listeners get to know you a little bit. Can you talk about your journey to joining NDRN?

Alden Blevins:

Yeah, absolutely. So like I mentioned, I did start out working in public education and from there I moved into nonprofit work first with the National Alliance on Mental Illness of Virginia. And then again with the Virginia PNA, the disAbility Law Center of Virginia. I feel like each step to getting to NCRN has been a new layer of experiencing how disability rights touches every aspect of our lives. I feel like I’ve really learned a ton. And today I see the world through the lens of ableism, and I want to be in a world where people with disabilities, whether visible or invisible, are valued for who they are. At its core, I believe people like me deserve to exist and know that we are valid to show up however we show up.

Stephanie Flynt McEben:

Alden, I know that you’ve talked a little bit about your experience and what interested you in joining NDRN and the network. Can you talk a little bit more about what disability rights work means to you personally? I know that for me, that’s just something that we automatically connect to. I know for me as a multiply disabled person, that’s definitely something that I take with me when it comes to doing my work from the day-to-day. And I imagine that you’ve got similar points, but would love to hear you expand a little bit more on that.

Alden Blevins:

Yeah, absolutely. Again, I see everything through that lens of ableism because of my own personal lived experiences. I have my own things that have happened to me through the lens of employment, through the lens of healthcare that are related to my own disabilities. So when I hear stories of other people struggling with some of the same instances of ableism or the same barriers that I struggled with, I’m able to really empathize with them and put myself in their shoes. So I think that my own disability identity has definitely helped me understand better what the world of disability rights means and why people maybe have more pride or try to cultivate that self-acceptance in their disability identities because I think that’s what feels the best and the most affirming to me. And I try to bring that to my work here at NDRN.

Michelle Bishop:

100%. Absolutely. Disability, we talk about it all day every day in this work that we do on this podcast, but it’s not this abstract thing. Disability and disability rights are very real. It’s something that we live every day. It shapes so much about our lives, our personal lives and our work. Can you walk us through that journey for you? You talked about how it impacted your education, you and the workplace, healthcare advocacy. Can we take it back to, tell me about young Alden? Did you know you had AuDHD at the time when you were in school? And how did that impact you?

Alden Blevins:

I definitely did not know that I had autism and ADHD. I went through some processes of misdiagnosis. When I was really small, I was diagnosed with anxiety and depression at age 10 due to extreme fluctuations in behavior and my ability to cope. They were interpreted by my family as dramatic moods or tantrums, but what I was actually experiencing were autistic meltdowns. But because clinicians in the ’90s didn’t really see me or any young girls for that matter as autistic, they missed the root causes of my behavior. I began taking anxiety meds and I continued with that all throughout high school and early college, but there were still a lot of other sensory and social things that the diagnosis just didn’t explain. I always knew there was something different about me. I remember feeling like an alien as a very little kid, and I did continue to struggle a lot with meltdowns and mood regulation through early adulthood.

Alden Blevins:

I was misdiagnosed with that anxiety and depression for years. Later, I eventually acquired another misdiagnosis of bipolar. The clinicians just generally lacked knowledge about how autism presents in women and girls throughout the 90s and 2000s. And especially because I had already made it to adulthood without the diagnosis, they didn’t necessarily have the knowledge to interpret what do these symptoms look like on an adult woman. I get the comment a lot of like, “You’re nothing like my 8-year-old nephew who loves trains.” And I’m like, “I am a 32-year-old woman, so I am different from your 8-year-old nephew.” And sometimes people don’t necessarily realize what that diagnosis can look like kind of on different people.

Alden Blevins:

But once I finally did get my diagnosis of autism and ADHD, I began self-accommodating. The diagnosis really gave me the confidence to claim my place in the disability community. And I began starting thinking about myself as a member of the disability community. But before that I didn’t, which is honestly a little silly because under my old diagnoses of anxiety and depression, I was struggling just as much, but that didn’t feel like to me a valid enough explanation for everything or a reason to need extra help. These labels fit me better, that they were really helpful for me in contextualizing what were the root causes of some of the things I was experiencing. So no, little Alden did not know at all, and she did not find out fully until she was 29 years old. So it’s been a journey.

Stephanie Flynt McEben:

I can only imagine that is… Oh my goodness, definitely been there, done that. I know that I had a similar journey with my own mental health disabilities. There’s just so much stigma that surrounds different mental health disabilities. So it’s understandable that there’s just this worry of identifying with the disability community in that sense. And I’m really glad that I feel like we’re getting to a point where we’re seeing folks more or less identify with the disability community when it comes to mental health conditions. Because I feel like, it’s just like you said, it really does affect people just as much as other disabilities. And I’m glad that we’re at a point where we’re seeing that. Would love to know what barriers you encountered during those points, but also too, how you overcame them and how you’ve overcome different barriers knowing that you were a part of the AuDHD community.

Alden Blevins:

Yeah, absolutely. So I would say for me, the key places where barriers seemed most likely to manifest were at work and in healthcare. And for me, I am somebody who can quote-unquote, “Pass” as neurotypical where you wouldn’t necessarily know I was autistic just from your first interaction with me. And that could have pros and cons because it means that I’m able to access better career opportunities, it means that I’m able to protect myself in spaces that feel ableist or unsafe by maybe going a little bit more under the radar, but it also means that I wasn’t really accommodating myself or thinking about myself as a person with a disability.

Alden Blevins:

And it means that sometimes when you are in those situations where you’re having to mask or having to put a certain face on your behavior to get people to take you seriously in the workplace, it means that sometimes I would run into situations where I was falling in people’s uncanny valley, if that makes sense, where they knew something was up with me and that I wasn’t communicating in a way that they would normally expect, but they didn’t have context or understanding for why that might be.

Alden Blevins:

And I found that that was really challenging for me in the workplace. People would misinterpret my need for clarity and asking lots of questions as, say, challenging their authority, or people would interpret bluntness as me being rude, or people would, say, interpret my focus on little details as being pedantic and not just the way that my mind works. And I find that when I do lead with some honesty about where I am and who I am and what I bring to the table, that people are just generally more compassionate and willing to meet me where I am. So that’s been part of the self-accommodation process.

Alden Blevins:

But also, especially in the workplace, I think finding a job that is really suited to your strengths and your weaknesses for that matter is something that can be really helpful to autistic people. I know that there are autistic people who find a lot of refuge in, say, the coding community because they are known for loving rules or needing to pay attention to detail or noticing things other people miss. That makes them accepted and is considered a norm within the coding community. I also find that careers like the arts or the disability service space tend to be a little bit more accepting of people with disabilities.

Alden Blevins:

So I’ve been very lucky to find opportunities within the disability service space so that I was able to better accommodate myself at work. Unfortunately, when I was teaching in the public schools, there was just not a lot of room or flexibility to be able to accommodate myself, and it was really, really challenging for me to be able to work full-time. So changing the way I viewed things and forcing myself to look for opportunities that really met my own needs were something that really helped me with encountering those barriers in the workplace.

Michelle Bishop:

You mentioned the healthcare system too, and I’m really glad that you did. And you talked also about getting a late diagnosis and being misdiagnosed. And I think all that’s really important because we’re hearing so much these days about the number of people with autism is increasing. Why is autism on the rise? And I’m like, “Is it increasing or are we just actually correctly diagnosing people these days?” Were they just going undiagnosed in the past and people though, like you said, that they were maybe just be rude or something like that if someone was a little too blunt? I think of it the same way, I think it was like a bunch of combat soldiers didn’t suddenly start getting PTSD. That was always happening, we just didn’t call it that and we didn’t know what it was. And we didn’t ever talk about it and we didn’t do anything to help them when they came home.

Michelle Bishop:

Sometimes the numbers go up because we start paying attention to and speaking about something that we’ve been ignoring for a long time. And I think that in my mind, school us on this, Alden, but in my mind, I think that’s really true in the healthcare system right now and how autism is being addressed. Can you talk a little bit about that, what it feels like maybe being mislabeled or misunderstood in the system?

Alden Blevins:

Yeah, so absolutely. For me, it definitely feels like we are just now getting to the point where the information that clinicians have is up to date and where the stigma around autism has decreased enough that people are willing to publicly claim their identities and to talk about their experiences more openly. I know that there’s a lot of fear in the autistic community at times with self-disclosing, especially in our current climate. And I think that part of the reason that it appears that diagnoses are rising is simply because there is less stigma and there is more increased information.

Alden Blevins:

So more people are willing to take the risk of getting their child labeled with something like autism if they think it means that their child’s going to be better able to act access services and supports instead of it just being something that is a label that hinders their child’s journey or stigmatizes them in some way. And I know from teaching, speaking with parents who I was very frank with about my own mental health experiences and my own experience with disability, that there is still fear of labels and what that means and what does that mean for your child’s future.

Alden Blevins:

So I think that overall a lot of the attitudes around autism are changing. We have shows like Love on the Spectrum. There’s a lot more autistic community that’s available in online spaces and public for the world to see. And I think that those kind of spaces that make autism more visible has definitely made a lot more people think to themselves, “Could I be autistic? My parents always behaved in this way.” Thinking about the traits in their families and things like that, I think it’s all really contributed to that feeling as if the cases are rising.

Alden Blevins:

Another thing that I do want to mention just from a historical point of view is that the diagnosis of autism is fairly new and has gone through some diagnostic changes over the course of developing the Diagnostic Statistical Manual 5, which is what they use to diagnose people with today. There was a point in history where autism was categorized either as being feeble-minded or as childhood schizophrenia. So there is periods in history where people were not being diagnosed with autism at all, and of course that makes the, “Rise”, quote-unquote, that’s happening now appear more stark.

Alden Blevins:

So just to have that historical context as another example, in the DSM-4, Asperger and Sensory Processing Disorder or SPD were all separate diagnoses. Whereas in the DSM-5, all of those things have been folded into autism. So it really is a case of kind of a confluence of factors making it appear that the numbers are going up. When in reality, in my mind, I feel as though autistic people have always been here. You can hear examples of us in people throughout history. You can hear whispers of autism and descriptions of Michelangelo or Albert Einstein.

Alden Blevins:

So I think we’ve always been here and it’s just a matter of it being more labeled and discussed now that really is having people feel like there’s some sort of epidemic or major change. When in reality, I think we’ve gotten a lot better at understanding what autism actually is and what it looks like.

Michelle Bishop:

I love historical and pop culture references in that, yes. Love on the spectrum, now all I’m thinking about is we have to get Tanner on the show.

Alden Blevins:

Ugh, I love him.

Michelle Bishop:

Tanner, if you’re hearing this, please come on our podcast. We are fans. We just want to chill with you and maybe record an episode. It’s true, I think there’s a lot to the idea of disability identity and disability pride and identifying with a disability community. That’s a journey for everyone. And I think especially if you have a disability that is somewhat invisible, I think it’s really different than going through life using a wheelchair where everyone knows, everyone knows, versus having unseen disabilities and really owning that and having a sense of identity and pride in that. I think that’s really cool. And I agree. I think we’re having more mainstream conversations about autism these days. The kind of discourse we’re seeing around autism now, does it reflect your experience? Do you think it’s accurate in telling the story of the autistic community?

Alden Blevins:

Not really. I, like I mentioned, am what people would call a high masker. So on the outside, I look like I’m fine, but on the inside, I’m really doing a lot of behind the scenes work to function or appear as normal or neurotypical. So contrary to popular belief, I can write poems, I can pay my taxes, I can do more than most people in a lot of ways, but I am still very much autistic and I still need supports in ways that other people don’t. Furthermore, I think I honestly have more in common with someone who can’t do those things than a lot of other people might realize or recognize. Our sensory struggles look the same. Our struggles with mood regulation look the same. And I want to emphasize that people who can’t necessarily put pen to page or quote-unquote, “Contribute effectively to society” are still valid, they’re still entitled to their life, their autonomy and their happiness, whether or not they can do those things.

Alden Blevins:

So I think that as a whole, we don’t really seem to understand well that autism is a spectrum. Something that I’ve heard over and over again is if you’ve met one person with autism, you’ve met one person with autism. And I think that that really resonates true for me. And I think that there are a lot of other people as well who probably don’t feel like they’re represented in the public perception or the public conversations around autism, either because they’re a high masker like me, or I think sometimes there’s an opposite end of the autistic experience that isn’t as represented in the media. What is it like to look like someone who doesn’t speak, who instead uses something like AAC, augmented communication device, to be able to communicate with their peers? I think that those perspectives of autism are also often left out of the conversation.

Alden Blevins:

So I think it’s getting better, but I do think we still have a long way to go in terms of autistic representation and really thinking and knowing and understanding what the totality of the autistic community looks like.

Michelle Bishop:

That’s really interesting. As someone who probably knows half of what I know about autistic people from what I see in pop culture and the other half from people I know, that’s interesting to think through, and now I’m wondering… Because I think that’s what a lot of people know about autism is how they see it represented on television. How does that translate into public policy? Is what we’re seeing in terms of policy reflective of who autistic people are and what they need and want to see? If not, this podcast mostly goes out to the PNAs, like what role can we play in making systems work better for autistic people?

Alden Blevins:

Yeah. I would say that a lot of times autistic people are left out of those conversations and perhaps not intentionally, not maliciously, but there’s this double-edged sword where in the autism community, if you are someone who has a lot of support needs, then you are denied autonomy, you are denied agency, you are denied your point of view about what’s happening to you and what’s happening to autistic people is valid or trustworthy. So that happens to people who have a lot of support needs. And then on the flip side, for someone like me who maybe has fewer support needs, you’re often denied supports or the conversation is, “You don’t need that, you can get along just as well as everybody else.” So there’s this push and pull between no matter what end of the spectrum you’re on, you’re dismissed for being able to represent your experience.

Alden Blevins:

A lot of times there’s this push and pull between the caretaker community and autistic adults. And I think that they see someone like me who can use their words, who is able to get opportunities. And there’s a resistance to someone like me speaking or using their voice and them feeling like it’s on behalf of their child who does not necessarily have the same experience as me. So I would just say that a wider breadth of autistic representation so that both people like me and people who have a totally different experience with autism are still seen in the diagnosis and understood that that’s what they’re experiencing.

Alden Blevins:

I think a lot of times people have one person as their frame of reference. And again, that’s one person with autism. So I think meet more autistic people, talk to people you know, think critically about some of the representation that you see on TV and in movies. Surrounding myself more with those perspectives helped me be able to see what the reality is in terms of the diversity of the autistic community and how many different points of view we really represent.

Stephanie Flynt McEben:

I loved that. Thank you so, so, so much for sharing that. And that’s one thing that I feel like we don’t think about as much subconsciously. When we’re consuming media, a lot of the time when it comes to the disability community, that’s where people get that representation, like Michelle was saying, and like you pointed out. When speaking about your experiences, media really can and does have an effect on the way that individuals with disabilities are seen and the way that autistic people are seen. So thank you for spotlighting that. Oh my goodness, I could get on a soapbox about media and disability and the various representations that I’ve seen that have been good and not so good. So yeah, oh my goodness.

Stephanie Flynt McEben:

But yeah, we have definitely talked a lot about lived experience, putting those lived experiences into policy change. And clearly there is so much going on in the world. Would love to know how you like to unwind, how do you take care of yourself in doing this work? Because we all know we cannot do this work unless we take care of ourselves and fill our own cups. So would love to know how you do that.

Michelle Bishop:

Yes, retweet, the important questions.

Alden Blevins:

So something else that’s really special to me about being an autistic person, and I think that’s like one of the most beloved or most thought of aspects of our community, is that we have what are called special interests. And special interests are just a topic that we focus really intensely on and go for both depth and breadth. I’ve experienced students whose special interest was taking apart speakers and putting them back together. I’ve experienced students whose special interests are One Direction, their favorite boy band, something that looks like very natural for a teenage girl to be interested in. I’ve seen all sorts of special interests. The 32-year-old dungeon master who will talk your ear off about his favorite MMA fighters. That’s another way that special interests could look.

Alden Blevins:

So when I am really trying to recharge myself, I dive into my special interests. I love music, I love pop music, I love studying the billboard charts, I love playing music and songwriting. And those are the things, those kind of creative outlets are what I turn to when I’m really needing to fill my cup. Experiencing those interests in community is another thing that really helps me fill my cup, so going to a concert with some friends in the real world or some people go to conventions and things like that to dive deep into their special interests. So those are some things that really help me recharge myself and feel ready to tackle the day and whatever’s coming at us next in the realm of disability advocacy.

Michelle Bishop:

I felt that a little too hard, I’m not going to lie. Speaking of autism being a spectrum and everyone falling on that spectrum somewhere, I’m definitely a special interest queen. I become obsessed with things and learn everything about them. So I feel very seen right now, Alden, thank you.

Michelle Bishop:

Anything else that we need to know about you as our new feels leader of National Disability Radio, the important stuff like things that bring you joy?

Alden Blevins:

We talked about it a little bit earlier, but something that’s bringing me a lot of joy right now is just obsessing over Taylor Swift and what’s going to happen with this new album. I’m ready for a new era, baby. I’m ready.

Stephanie Flynt McEben:

We are ready for it.

Michelle Bishop:

We are all going into our show girl era.

Alden Blevins:

Yes.

Michelle Bishop:

The swifter hood. We’re going to start getting emails to the podcast email that are like, “You have to stop talking about Taylor Swift and start talking about disability rights.”

Alden Blevins:

Yeah.

Stephanie Flynt McEben:

Haters are going to hate.

Alden Blevins:

As the queen herself said, haters are going to hate.

Stephanie Flynt McEben:

Right. Exactly.

Michelle Bishop:

Before we wrap up today, first, Alden, oh my gosh, thank you so much for just sharing all about you and jumping right in and talking all about autism and lived experience and policy and everything under the sun. That was amazing. And I’m sure you’ve heard the podcast before, so I’m sure you know that before we wrap up, Stephanie has a joke for us, I’m sure.

Stephanie Flynt McEben:

I will say this. I’ve gotten some constructive criticism that my jokes have been a little too hard lately. So I think this one’s going to be easier, but yeah. So what is a tree’s least favorite month? There are only 12 options.

Michelle Bishop:

I feel like December when they all get chopped down and decorated.

Stephanie Flynt McEben:

That’s a good one, but no.

Michelle Bishop:

Alden, what you got? See, these are still hard.

Alden Blevins:

I truly have no idea. I am sitting here reciting the months to myself like an elementary schooler and have not yet found the right answer.

Stephanie Flynt McEben:

My goodness. Okay. No more guesses?

Alden Blevins:

Okay. Oh, what is it?

Stephanie Flynt McEben:

September.

Alden Blevins:

Oh my gosh.

Michelle Bishop:

[inaudible 00:28:27].

Stephanie Flynt McEben:

Oh my gosh, I’m so proud of myself.

Michelle Bishop:

Look, you’re winning me over.

Stephanie Flynt McEben:

Y’all heard it here first, folks.

Michelle Bishop:

It’s about time. We’ve actually been friends for years. It’s probably like me and Jack, they probably think we hate each other.

Stephanie Flynt McEben:

Yes.

Michelle Bishop:

Stephanie is the most wonderful person ever. She’s the nicest person you could ever meet.

Stephanie Flynt McEben:

Oh, thank you.

Michelle Bishop:

It’s all love on this podcast, guys. It’s all love. Other important business before we wrap up, I hear Alden does some songwriting and we totally need a new theme song for this podcast.

Stephanie Flynt McEben:

Yes.

Alden Blevins:

Ooh, okay.

Stephanie Flynt McEben:

I can help with piano composition if you want, Alden, and then we can help with lyrics. I actually do some songwriting also, so we should definitely connect.

Alden Blevins:

Okay, yeah, absolutely. We need a jingle.

Stephanie Flynt McEben:

Yes, yes. Jack has been pushing for this for a while and life has been life-ing, and so I haven’t had a chance, so we should totally do that.

Alden Blevins:

That would be awesome.

Michelle Bishop:

I’m into it. Look, we had a good joke, we had a good conversation. Alden, can you tell the people where they can follow us?

Alden Blevins:

Yes, we are actually now available on all of the platforms where you get your podcasts. You should be able to look up National Disability Radio on iHeartRadio, on Apple Podcasts, on Pandora Music, on YouTube Music, and be able to find us in any of those places. If you cannot find us somewhere, you can always go ahead and check out our website. Under the resources tab, you’ll be able to find a button that says National Disability Radio where you can find a full feed of all of our episodes.

Stephanie Flynt McEben:

Wonderful, wonderful. Thank you so much, Alden. And again, welcome, welcome, welcome. We are so excited to have you as our pro host, but until next time, folks, bye.

...more
View all episodesView all episodes
Download on the App Store
National Disability RadioBy National Disability Rights Network
  • 5
  • 5
  • 5
  • 5
  • 5

5

7 ratings