Space to be: A Neurodivergents POV

Banu Balaji, the host and an occupational Therapist chats with Dustin, a 22-year-old autistic adult who shares his personal experiences and insights about living with autism. He discusses his late diagnosis at 19 and how it has impacted his life. Dustin highlights the challenges he faced in school, particularly with the structured system, which often led to feelings of overwhelm and frustration. He also talks about his mother's proactive approach in helping him manage his symptoms and how she continues to support him as an adult.

Dustin shares his struggles with emotional regulation, particularly in situations that involve audiovisual stimuli, and how he uses techniques like "flow through life" to manage his daily tasks. He emphasizes the importance of understanding and accommodating individual differences in people with autism, rather than trying to fit them into a standardized mold.

Throughout the conversation, Dustin emphasizes the need for more awareness and acceptance of autism, particularly among neurotypical individuals. He hopes that by sharing his story, he can help others better understand and support autistic individuals in their daily lives

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Transcript

 Welcome to Therapod. Therapod podcast is about breaking down what we've learned and what we practice as therapists into easy to understand and accessible information.  We know that parenting and caring for a child, especially one that has additional needs, can be challenging, if not overwhelming. We are here to break it down for you. 

We're a group of experienced clinicians, occupational therapists, speech and language therapists, psychologists, and pediatricians, and we will be chatting with parents, teachers, and other professionals working with children. We will also be reviewing books, toys, and equipment so you can make informed decisions. 

Our information is not clinical advice. These are useful insights and information. So please seek professional help if you need it.

Hi, I'm Bhanu Balaji, Occupational Therapist. And today I'm chatting to Dustin. Dustin is a 22 year old autistic adult. In his free time, Dustin hosts a podcast with his friend called Unfiltered Narratives. And Dustin also works with LGBTQ plus organizations to set up community events. And he also does stuff that's normal for a 22 year old to do, like go out and have fun with friends. 

Justin and I had a wonderful chat about  his world, about being an autistic adult, the challenges and his successes and wins, and his thoughts about  autism. 

 I didn't get my diagnosis until I was 19.  The whole concept of, uh, autism being a neurological disorder is that the way your brain set up is just, it's just warped in a way than what we would normally consider it to be.

The traditional concept of how a brain pattern would function. So it's going to affect different people so drastically differently. Um, and then what we did with the information we had is we just kind of categorized different versions of neurological disorders and found commonality between them um, so with that,  it just tends to be a general idea that, okay, we have these subgroups of neurodivergency.

Let's see how we can help  work with these specific symptoms, like stemming.  over stimulation when it comes to audio visual scenarios like that or emotional irregulation because I know my main struggles growing up were emotional regulation when it comes to like the idea of if something too overwhelming happens I kind of shut down  and I was  blissfully gifted with a mother that would be like okay let's work and let's break down these  let's go step by step and she still does that for me as an adult to this day.

If I hit a point or say like I'm late on a bill, I don't like to be late on everything. I need everything on time, or at least try my best to,  um, and I'm like, hey, I'm struggling with this. I feel like I'm not doing great as an adult, which I feel like a lot of autistic adults tend to struggle with, um, She's like, okay, what bill is it?

And I'll be like, oh, it's my phone bill. She said, how long do you have before it would shut down? And I said, a month. And she'll say, okay, so you have a month to figure it out. You don't have to overstress about it now. Just work towards solving that goal. People are going to be late about bills. It's just how adults are.

Even some of the most professional adults will be like, oh, I slipped up this week. I need to work towards getting this bill that I missed on accident.  Um, can you like, you said, you know, you was 19 by the time you got your diagnosis, like what started you on that journey to think, okay, something doesn't fit or something doesn't feel right. 

Yeah. So, um, when I was younger, I noticed that I was very overwhelmed easily. Um, a lot of it structured from the school system because I find that the school system isn't very well set up for people that have either hidden disabilities or other Um, mental health disorders, especially when you're a teenager, which is like the most emotional time in your life.

Um, and so I would discuss with my mom and I'd be like, I'm having these weird feelings. I don't know how to explain them. And, uh, my mom would often be like, okay. Everybody's having those feelings. Let's work through them. Let's see how they're going. And even after working through them, I'd be like, okay, something's still like, it doesn't feel like everyone around me is responding in the exact same manner that I am.

Um,  and I know that I want to preface this by saying I do not blame my parents for not my mother for not knowing because it's people with autism can blend in very well. Um, and  And I have a generalized, like, assumption, this is just a theory, that when it comes to female autism, they often last longer because they're better at masking.

And I was raised by exclusively women, so I think I might have just picked up these traits over time. Absolutely. Which  might have given me that ability to last so long, because I,  I grew up and you would expect by every statistic that I would have been gotten caught in the windmill somewhere and somebody be like, okay, this is weird.

What's going on here, but I just kind of, I think also, it's not just the mask. I think because you had that, um,  the, you know, such a nurturing and protective and a proactive mother, maybe she wasn't proactive and kind of say, okay, what's wrong try find, try and find out what's going on. She was like, okay, what can we do?

What can I do to help you? What can I do to help you help yourself? So that was such a proactive move that probably kept you resilient and kept you going and kept you functional.  Yeah. And a lot of it for years and years. I was convinced that every person had felt this way. Like when nobody, when you're in your own point of view, all you do is assume, okay, everybody's like this.

I'm just not handling it as well. I'm not processing it as well. I need to figure out how these other people are doing it that I'm not doing it well. Um, and as I had gotten into like 15, I had been taken to the doctor for anxiety, depression, and I had been medicated on. those issues. And even after that, I often found I was like, something's still like, there's still something in the back of my mind going on. 

Um,  and something randomly popped up one day on social media, and it was just a description of like symptoms when it comes to autism. Um,  And I was like, that's really weird. These seem like very similar to things that I do, because stimming to me was always such an anxiety activity. And I was like, Oh, people do this, they get anxious, they get their hands move around, they start patting their hands together as kind of a distraction.

And then so I started doing more and more research. And I was,  Kind of hit a point where I hit like a self diagnosis stage where I was like, okay, this, like, I'm almost a hundred percent sure here. And so I was like, I'm just going to find somebody in the area that can test me. Let's just do a test and we'll see how it goes.

And. I went to one doctor at a mental health facility and I said, Hey, here's my symptoms. And they're like, okay, you seem to be fitting in line with this. Let's get you to a specialist.  I, um, then I think I drove about two hours to go see this specialist. And we sat there, we went through, Like these long, extensive tests, which I get that autism is a really hard thing to diagnose, and especially in adults, because a lot of these tests for autism are, are based for children, and I was still getting some of the tests that children often get, um,  and I was doing like 300 word questionnaires, we did one at the beginning to test how I was feeling, and then we'd do a couple tests, and as I would get more stressed, she would retest me,  and see how my emotions had like changed throughout. 

Um, we were doing general tests. Like she would hand me a book that had no words in it. It was literally a picture book, not it. And so she'd be like, I want you to describe what's happening in this book. And I would give kind of the most like bland generic detail. And I'd be like, this frog is sitting on a lily pad.

And then I'd turn the next page and I'd be like, this frog jumps to a different lily pad.  Um, yeah. And then she'd be like, okay, okay. Let me show you how I would do it. And she turned it to me and she was like,  this frog's name is Jeff. He is sitting in the sun, sun tanning, something like that. And I'd be like, listen.

Nobody said we could make stuff up. You didn't tell me that.  I feel like you're pulling rules outta nowhere that I was not told about  . And as these tests continued, I noticed I got like increasingly angry, like to a point of like,  I was like, what is happening right now? Like I had never experienced this much anger before.

Um, we did a lot of pattern recognition, which I wish I could tell you all these tests. It's been three years now So i'm kind of going off. I'd be i'd be familiar enough with a lot of it because I do assessments myself. So, um for other people So I kind of know where they're going with it, but it's really interesting to hear from your point of view  That frustration that creeps in  Um, and I think like when you're,  when you, when you were a teenager and that's what was probably happening around you, there were all these rules that were unspoken or people kept changing things, but they knew what to do.

And while you were still probably sitting there saying, Hey, what happened? When did you change?  Yeah, I was also very much like,  uh, me growing up, I grew up in a small rural Missouri town. So it was, it was only busy during tourist season. So, um, but our school would do things like our school was pretty well funded.

So what I would happen with me is I'd often get put into like reading programs for kids that were struggling with reading.  Um,  And they would take me out of class and I would do those. And it was a lot of these like we're helping, but we don't know what we're helping with, if that makes any sense. And as I got older, those classes started to fade and fade more because they expect.

As these Children get older that they can maintain on their own.  Um, which is why I have such a hard stance on the school systems while they are trying at this moment are not set up well for people that have autism or many other neurological disorders because It's so structured that sometimes it's weird to say because a lot of people with autism like structure,  but often if it's not their structure, it can  just completely mess them up.

A hundred percent. And it is that expect expectation that, um, everyone fits, you know, what's the, all the,  you all fit into the round hole, whether you're a square peg or a round hole, you kind of try and fit in. Um, you know, they're trying to get you to conform to all these,  rules and regulations that mightn't make sense to you.

What is  Like looking back now, what do you think would have been helpful for you at that point   um,  if I'm being honest, I  looking back, Hmm, this is a hard one. I'm not going to lie. Cause it's really like a lot of the things I needed at home were pretty well, like help, like I was helped out very well, no matter if my mom knew or didn't know, she still like structured my life in a way, specifically to what I needed.



Cause it, every, thing just kind of takes time, especially with autism. What I tend to think about it is something that may take  more generalized tasks. We'll say, well, something that may take a neurotypical person, say a month to learn. Um, if it's not something the autistic person is interested in or doesn't want to learn.

It could take three, four months  to be like, okay, I've got this down now. Or like, I've at least figured out the basics here because  I often found that when it comes to things I didn't want to learn, um, you felt like, , it would often feel like. A like physical pain was in my body.

That's very interesting to tell me more about that.  So I,  if I was like really wanting to focus on a task, but couldn't say, especially like in school, I would often see if I'm struggling on a test or something. I would just sit there and my brain would go blank. I would just stare at it. And it was like, I was feeling every nerve in my body.

Like I could feel every part of me at all times.  And it would get overwhelming, which would just build up that feeling constantly. Um, I had this, I would similarly have issues. I grew up with, um, chronic migraines. So I would have these like debilitating hospital visit type migraines and when that would happen my I would get very overwhelmed, obviously, because a child that's ill would tend to get overwhelmed and it would cause not only the pain from my headache, but it would overwhelm me to the point of like, throwing up, my arms would start to go numb, it's these like, weird things that nobody could explain, the doctors are like, I don't, I don't know what's going on here, like I can't.

Pinpoint this. I don't know why your arms are hurting. Um,  and it was like, it was just like physical pain. Like I,  it's so hard to explain. I wish I could in my words, but it's kind of a weird thing. And I think you're doing a great job. And what you're really expressing is your interception. I don't know.

Have you ever heard that term interception?  Um, I have in some aspects, it's kind of.  So it's all your inside feelings, you know, hunger, thirst,  butterflies in your tummy, how your muscles feel, how you're kind of feeling in your body at any given time. But also your emotions, like emotions have very powerful interceptive feelings too.

And I think they can be really heightened. And what you're describing is a really heightened sense of your interception because you're so overwhelmed. Um,  um, and, and I think that is such a.  I mean, it's so, um,  it's, it's an impairment for you because it stops you from doing all the other things you need to do and want to do,  but also I think neurotypicals  are so in tune with their interception, they don't even realize that it's happening, that they can feel their bodies. 

Um, and so that's why your doctors were like, I don't really understand what you're saying to me.  And it would often turn into, I think a lot of the issues that the perspectives on autistic people is that because of these things we can't explain or don't make sense to somebody that aren't, isn't in our shoes.

Um, you can often get perceived as lazy or, um, Like you're not actually trying or you're just trying to barely make it by and I'm like I'm putting my full force into this It's just not meeting the standards that you specifically Created so I think fixing those standards can often help relieve a lot of that stress for people with autism and  It's,  the system in life is so, like, specifically built that one adjustment, people start to freak out,  and  that's that same feeling I often think that autistic people get when  They're doing day to day tasks.

It's that  everyone likes their structure. It's just that we have to figure out what that structure is, depending on the individual. If that makes any sense. It makes a lot of sense. And I think also with that structure, it is very, very hard when that structure is not in place for any reason that it kind of, life can really feel out of control, I think. 

Would that be accurate? To say.  Yeah, I, I often found that, um,  I was doing what I, the way that I taught myself to kind of maintain and be comfortable is I taught myself the, like, flow through life method. I don't know that it's, that I really have to be careful about the things that I stress over, and I kind of, as I got older, taught myself.

And my mom used to always say to me, she'd be like, okay, are you going to be worried about, is this something that immediately needs to be fixed? Is this something that we need to focus on right now? Or is this something that's  a month down the line, two years down the line, 10 years down the line? Um, and so we'd be like, okay, if we don't need to worry about it right now, let's focus on what we do need to worry about right now.

Um, like I, I, I,  I would be like, okay, what am I going to do for my future? And I still, I think a lot of people, young people will deal with that. And I think it's just that  you will kind of like hyper fixate on that thought. You're like, am I doing the same as people that are my age? Am I fitting that general demographic?

Am I,  Am I maintaining the constant flow that I need to, to progress? Um,  and so I think it's just,  Oh,  a lot of the emotions that neurotypical and autistic people feel. It's just that neurotypical people are in a society built for them. So they don't feel them as aggressively. Um, the world is literally structured around them to make sure that they feel safe, comfortable, and at home in them, in their own brains, bodies, bodies and stuff like that.

Whereas autistic. People are fighting to find their place. They're fighting at all times. The, not only with the regular middle school, upper elementary, high school, but also when you get into college, autistic people are, have a higher statistic of dropping out of college because that structure is often just as struggling for them, which is causing them to not go into as adverse fields.

I know I struggled with college. I dropped out twice out of college at this point. Um,  And it's not like we don't want to do those things, like, we, with our whole heart, want to go in. But we also understand that maybe they aren't areas that are going to benefit us. Like, we, I'm gonna go in, spend all this money, and not be able to make it through because it's too much for me.

And there are autistic people that make it through these systems, as there are with every general statistic. You're gonna find people that outlie. Um, But we,  we're seeing a pattern and it's just trying to figure out how do we fix these patterns and that's a lot of what it is.  It is.  I think even up to recent times, like, the traditional view of the 1950s is everyone was pretending to be the same person. They would, it's just a husband and wife, two kids, a boy and a girl, um, with their car and the man going to work and the wife staying at home. 

And everyone was just a clone of each other, trying to look like each other to present well. And within that, we saw so many people that weren't able to make the cut because they're struggling to meet these certain ideals. And I think recently, Even with like Gen X going into millennials going into Gen Z, we've seen like a slow, like progressive idea of being like, okay, this isn't working anymore.

It wasn't really working before, but it's definitely not working right now.  Um, so we're trying to figure out a new way of  acknowledging how people process and deal with emotions and life and things like that. Um,  and I think there's  a couple, like, deliberate reasons behind that, whether that be economy, politics, mental health issues on an all time high, uh, the internet, being able to connect with as many people as possible at all times.

I think it's,  it's just interesting how different things kind of co align with each other.  And I think it's also people like yourself who are now kind of coming out and saying, actually, no, that's not acceptable. Or that's not what we want. And I want a different to voice that. That's powerful. And I think having platforms,, and create a better world.  Yeah, that's every, every person wants the world to be better. It's just every person's perspective of a better world can often differ so dramatically.

Um, as with autism, it differs very dramatically. Somebody, it sometimes blows my mind that while I can exist with autism, there are also children that are nonverbal and are  often, I,  Don't want to word this inappropriately, but not handed the best end of the stick when it comes to Autism Spectrum Disorder.

Um, they're still very capable, it's just that their tools have to be adjusted and changed.  And so their race is going to be a little bit longer than mine is 100%. And again, autism is just one thing like you could have other difficulties and going on for that person like they could be a learning disability.

It could be ADHD, they could be, um, a parent there that's actually struggling with their own mental health or find this whole thing very, very stressful because of the place that they're in. And therefore,  whatever is presenting becomes much, much more stressful for them. So there can be lots of things going on for this.

So it's quite complex. And it's very hard to say, okay, for this one person, this, all these people, this is what we need to do. That's very hard to say.  Oh, most definitely. And when they're.  I don't know if it's because when it comes to autism, you're already there at a mental health clinic, so you're often getting tested for multiple things, but people with autism are, often have a higher chance of having other underlying disabilities.

Um, like my list is it's autism spectrum disorder, anxiety, depression, OCD. And  I think with OCD and autism combining together, that really like hardened into my soul that like I need to have every day planned out from beginning to end. 

I feel like that's kind of my main point. I keep kind of repeating myself being like, if you just have to figure out how to structure for yourself, especially as you get into adulthood, because  being autistic as an adult can kind of feel lonely sometimes. Um, cause you may not understand social cues of  asking your friends to hang out constantly and they may be annoyed, but don't want to tell you, or they may also not be.

And you've convinced yourself they're annoyed, um, or, or, or the fact that they want to hang out, but maybe you're not in the headspace to hang out with them. And then they're annoyed because you don't want to go to whatever they want to do.  And that's, I think that as well, when it comes to, as I got older, I kind of taught myself to be like.

Is my social battery high enough tonight that I'm gonna be able to stay out for the entire thing? Or like even a majority of it? Or am I gonna get there and immediately just be like, this was fun, gotta go, bye. Is this worth me getting ready, taking a shower, leaving the house, just to be there for 15 minutes and then leave? 

And it's weird as I got older, looking back on these things after I got my diagnosis and being like, Oh, this makes a lot more sense now.  Um, being like, okay, these habits behaviors that I created for myself,  I'm now able to connect the dots and be like, okay, I wasn't going crazy. I wasn't making this up.

 I think now it's become less shameful to say, Hey, I'm autistic or I have autism spectrum disorder as it was  four or five, 10 years ago.  I'm really curious to know, um,  I know you feel very positively about the label, autism, autistic people.

Spectrum disorder, but do you ever feel like, you know, why are they calling it a disorder? Is it really a disorder?  Well, my point of view on it is it's so like invoking and affects my life So dramatically like there's people that discuss autism and say it's a disability which i'm  sometimes can very much agree with.

I am dramatically affected day to day by my autism in a way that neurotypical people are not affected. I, at work, I planned it out that every hour I have to go to the bathroom for 10 minutes and just breathe, just take a second and walk away from my station. And then I can come back and I can start fresh. 

But I can't sit there for the extensive period of time and do a repetitive task. I might like freak out. Like I'll have a breakdown if I don't do things the way I need to do things. Because I know if I don't leave for that 10 minutes,  I'm going to sit here, I'm going to freak out, I'm going to slow down my progress.

I'm not going to be going as fast and I'm going to be  looking worse in my job than if I walk away for 10 minutes, say I'm going to the bathroom, and then I come back, I'll be at a faster speed. I've calmed my brain back down. I'll be able to progress faster.  So  it's kind of  And it's not just generic things like needing 10 minutes to myself.

It could be days where I am just so overwhelmed. I'm crying in bed. I'm just standing there stemming or I'm in public and I've lost all ability to talk to anybody in a comfortable way.  Any way of masking has gone away. Um, and I'm just there lost and confused for a little bit. Cause even if I'm in a situation where I don't know the answer, Especially for me, I will still sit there and try to fix the problem and sometimes make it worse.

Say I get on a bus and I end up in the wrong location or I get off at the wrong stop and I'm like, okay, what do I do now? I've obviously made a mistake. How do I fix this? And I will sometimes just shut down.  And somebody that doesn't have this brain would be like, okay, that's cool. Let's, let's find another bus.

And I'm, my brain will go, buses don't exist anymore. I can't make it in. I'm going to have to walk two hours home because buses have stopped existing. Cause I got off at the wrong stop.  And  it's, and I can see now that is disabling. 

I think the 10 minute break comparison was a bad choice on my part, but it's just, Finding these like little things in life that I'm so used to doing that sometimes and that's your regulation. You're kind of bringing back your regulation. You're kind of bringing yourself back, and that's a fantastic strategy.

And I think that's something many people can take away from today that everyone, especially kids who have Autism need that,  uh, time to regroup.  And I, my biggest advice for parents is not only patience, but please, please try your best to work, not necessarily around your children's issues, but work with your children's issues.

Like they, they know what they're doing. There, there's a reason behind every choice decision and  idea that they have. They know why they want to do it, they know the feeling behind it, because I find autistic people are so  much better at feeling their emotions to sometimes their own fault. They will feel their emotions so strongly and in depth that they'll be like, okay, uh, now I associate this with this and that with that, and I need to do this at this time, because they know what makes good emotions happen, they know what makes bad emotions happen, and they know what's going to send them into a breakdown.

Um,  and my mom, I keep mentioning my mom, but she was so functional. She seems like one dynamite lady.  You very much. Um, I used to, when I was younger, I would watch the show called Glee. Um, and there was this one guy on there, his name was Blaine. He wore bow ties and fedoras and button up shirts every single day in the show.

And I saw that and something clicked in my brain and I couldn't figure out how to  like process it. But I started wearing bow ties, fedoras, and  button up shirts with different colored pants every single day. And my mom wasn't like, Oh, people are going to make fun of you at school. People are going to look at you weird.

She wasn't like, we need to stop this to make sure that our household doesn't look like I'm raising you ridiculously. She was like, okay, let's figure out what clothes we need to get you. Let's shop for you. If I, she would sometimes see a fedora in a  thrift store and just be like, I'm just going to buy this just in case he wants it.

And that's really leaning in. Isn't it really leaning into your interest, your motivation, to your personality, everything that's beautiful.  And I think, uh, and I had hit a point where if I didn't wear them during the day, it felt like my day wasn't going properly. So she would structure my life around it.

I, I even have photos of me when I was like, I wanna say 13. We're on like a mile long hike, and I'm in like a pair of jeans, a button up t-shirt, and a fedora and a bow tie and some dress shoes. Like I'm about to walk down a wedding aisle. But it was just, that was just who I was. I couldn't get rid of it.

My friends knew it. They were very accommodating for my existence. Um, there were people around that would make jokes about it, but  I think that the, there's one really good thing about not understanding social cues as an autistic child is that you sometimes really struggle to figure out if somebody's making fun of you.

So you'll kind of do whatever you want and be like, well, I don't know. Maybe they are. Maybe they aren't. Yeah.  I, uh, it was, it's been so nice chatting to you and your insights are just, um,  um, you know, amazing what you can bring to  the younger  autistic group and how, you know, how I think the main takeaway for me from today is that leaning in peace, that letting,  letting that beauty of that person happen and supporting them in whatever way you can.

And before we finish, it's always good to hold in mind that if there's something that has resonated with you and that it's staying with you, or maybe leading to a big feeling that you want to talk about, contact your GP, who's your first port of call.

And don't be afraid to reach out to family and friends to have a chat. Follow us on your favorite podcast platforms for updates. We also do book reviews on Instagram. So make sure to follow us on theropod. podcast  for Instagram. If you have any topics or queries you'd like us to address, email  theropodpodcast at gmail.

com. That's T H E R A P O D P O D C A S T at gmail. com or DM on Instagram. Bye.