Tony Mantor: Why Not Me the World

Reid Miles: Navigating Late Autism Diagnosis – Overcoming Stigmas, Building Resilience, and Advocating for an Inclusive Future

• Tony Mantor

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How does a late autism diagnosis reshape one's life? Discover the profound journey of Reid Miles, an autistic author and podcaster, as he opens up about his late diagnosis in his 20s and its transformative impact. 
Reid shares his experiences with the social security system, the clinical trial that validated his autism, and the hurdles he encountered with communication and social interactions. 
We also delve into Reid's struggles with employment and the stigmas he faced, particularly the stark contrast in responses before and after disclosing his autism.

Join us as we navigate Reid's challenging high school years filled with struggles in note-taking, social acceptance, and bullying. 
Transitioning to college, Reid found a sense of belonging and acceptance, culminating in earning both an online degree and a master's in advanced computer science. 
Despite these achievements, Reid faced significant challenges in finding relevant job opportunities. 
Now in his 50s, Reid discusses his current pursuits, including podcasting and writing about his life, and offers valuable advice on stepping outside of comfort zones, especially for those within the autistic community.

Explore the intricate balancing act Reid manages between ADHD and autism, sharing his personal strategies and experiences that resonate deeply. 
Learn how his podcasting journey has become a tool for improving social skills and making meaningful connections. 
Emphasizing the importance of a solid support system, Reid recounts personal anecdotes, including a rare meltdown experience at the airport, and the crucial role his family played in his life. 
The episode concludes with a powerful discussion on the need for unity within the autistic community, the disparities in support systems across countries, and a call to action for better treatment of disabled individuals, urging society to move beyond labels for a more inclusive future.

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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

Welcome to why Not Me? The World Podcast, hosted by Tony Mantor, Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Their stories Some will make you laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. Hopefully, you gain more awareness, acceptance and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to why Not Me? The World. Today's guest is Reid Miles. He's autistic, he's written a book and has his own podcast. He joins us today to share his personal journey with autism and offer valuable insights into his daily life and future aspirations. Thanks for coming on.

Speaker 2:

Not a problem.

Speaker 1:

So tell me, what age was it that you got your diagnosis and found that you are autistic?

Speaker 2:

It's a very long story. We didn't know I had Asperger's growing up. We knew I had ADHD and it was probably in my late 20s. We had family and friends and even my general practitioner come and tell me, come and tell my parents. I should say that I think Reed has got the symptoms of high functioning autism. So that kind of set off a bell above my parents' head and the light saying, oh, that explains a lot of why he does what he does, the way he is with people and why he has trouble not knowing when something's a joke and how to interact and stuff like that. As life went on, we just went with that unofficial diagnosis for a while. I graduated college and went on to get my master's later and then when I came home from school my mom was like we're going to try again with social security. And we went through social security and got that and then I came across a clinical trial for autism.

Speaker 1:

Okay, and what did that entail?

Speaker 2:

What that does is what it was. It was for communications and I figured I had trouble with communications and that would be perfect. So I went through that. But the first thing you had to do with the clinical trial is you had to be diagnosed to see where you are on the spectrum. So they had some idea of how to test out. And let me tell you it's not just some little test. How to test out. And let me tell you it's not just some little test. This is a long test, four hours long, broken up with a lunch in between. They take me and my mom and they put us in two different spots. They took my mom and brother over to a separate building and they asked her questions because they wanted her honest opinion of me, not what I wanted. They wanted honest opinions from me because this is what I thought of myself.

Speaker 1:

Okay.

Speaker 2:

That was the official diagnosis. From that point on it was just about when I was about 50, that was my official diagnosis was.

Speaker 1:

So when you got that diagnosis, did anything change the way that you looked at different things, the way you thought people may look at you? What went through your mind at that time?

Speaker 2:

I knew I mean, we knew I was autistic. I've always viewed the world differently. It just opened up my eyes to the fact that there are more people like me out there in the world. Okay, that I'm not alone. And as I went about my life I realized I need to become part of that community. Yeah, sure, I started looking through Facebook, through autism groups. I realized a lot of the groups are very nitpicky about their rules you can't advertise, you can't talk about this, you can't talk about that. And I was doing my podcast during that time and a lot of the groups just kicked me out because they didn't want me talking about my podcast. Okay, I did meet a really good friend there and he helped me understand more of the autism world. He told me the differences between awareness and acceptance, the differences between the yellow ribbon and the puzzle piece. So I was learning where to step and what not to step on.

Speaker 1:

Sure. So when you say that you looked at the world differently, can you tell us what were your views of the world and this may be before you was diagnosed? So, did your outlooks change before you was diagnosed and then, of course, after you was diagnosed?

Speaker 2:

The world. Nothing really changed but I realized it kind of changed because I realized after a while I started when I was applying for work. I realized every time I put that little checkbox and circled autistic, I never got a response.

Speaker 1:

Oh, okay.

Speaker 2:

And before that I would get responses. Before we knew I was autistic, I would fill out an application and maybe out of one out of 10, I'd get a phone call saying we'd like to interview you, Sure, and then afterwards it's like not even one phone call, not even one email. It's always the basic story of I'm sorry, we decided to move on.

Speaker 1:

Wow, that's sad to hear.

Speaker 2:

And it's like you can't sit there and bite them because they're not saying it's the autism, but you know in your heart it is.

Speaker 1:

Yeah, yeah, that's sad. What was your view of the world when you was 15? That was your formative years, where you probably knew something wasn't quite right, but you really didn't know exactly what it was. So how did the world look to you during your teens?

Speaker 2:

When I was 15, all I knew was I had ADHD.

Speaker 1:

Okay.

Speaker 2:

And I didn't know why I did what I did. I remember stories from my parents about my behaviors, like I remember there was a story of them telling me, you know that you used to take apart your father's tools just to see how they worked, and I don't remember that. It's like it got locked away in the back of my head. I viewed the world differently back then. I was more happy, not as cynical, because of the way people view people like me who are autistic and all the others. And then, once I got that diagnosis, I was like oh, and it's also. It's the way people look at you too. When you tell them you're autistic, they kind of look at you differently. I mean, there's those who think autism means you're not bright, and then there are those who think who are okay with it and cool and stick around being your friend. Yeah.

Speaker 1:

Yeah right, so during your high school years, adhd was pretty well known at that time. So your autistic traits that you had at the time, that you really didn't know was autistic, did that affect your social life at all?

Speaker 2:

Through high school. High school was my hardest years for me.

Speaker 1:

Yeah, I hear that a lot.

Speaker 2:

I struggled. I didn't know why I was struggling with all my different courses. Sure, One of my biggest problems was I had trouble with note-taking and I never knew why. I mean, I'd look around my class and realize all these other kids are doing fine understanding, watching a movie, being able to take notes from it.

Speaker 1:

Okay.

Speaker 2:

And here I'm struggling to figure out what's important and what's not, and I'm trying to figure out why my mind can't process what's important from this film.

Speaker 1:

Right, okay.

Speaker 2:

High school was tough because I didn't know what to say and what not to say. You can say I kind of was masking, because I was pretending to be somebody that wasn't part of the time, just so I would be, people would look at me and accept me for who I am. Yet I got picked on by. I got picked on by the bullies extorted for lunch money, for protection, even though I had an older brother who had just graduated and the upper class knew me it's still my class and down to the juniors, or even the sophomores picked on me and it was tough.

Speaker 1:

Yeah, that's tough to take. So what changed for you between high school and college?

Speaker 2:

Maturity Wow, that's great. When I got my online degree from Colorado Technical University, it took four years of time. When I went for my master's, there was a difference between when I originally went to school for college for my degree and when I went for my master's degree. And it was an immaturity level because when I went from high school to college, people were different. People treated you different. You were one of people didn't know I was autistic unless I told them. So I was part of the fray. No one knew anything about me. I was more outgoing than I was in high school. People were kinder. Oh, that's good. High school I felt like people saw me differently. My first time going away to college out of high school I got picked on greatly. I was in the university of oshkosh in wisconsin and every night would be something. There was a thing they called being pennied in your room where they stuck money in between the door jam and it locked you and you couldn't lock your.

Speaker 2:

You couldn't open the door well they would target me as being gay, which I wasn't. There would be shaving cream all over my door, condoms on my door handle and I was just picked on greatly. And then after two some my summer and my regular semester I said this isn't for me. I gotta get out of sure.

Speaker 1:

So what happened next?

Speaker 2:

I took time off, tried to find work and I couldn't. So an opportunity fell into my lap to go get my degree online and I did that. That was more easier because it was doing it at home. I did pretty well without very little help from my family or anyone. I mean, the only time I really needed a little bit of help was with math, and after that, I mean, I graduated with a 3.5 average.

Speaker 1:

Yeah, that's great. I mean, that's real good. Okay, so what do you do now? But I guess first, what did you go for to get your master degree in?

Speaker 2:

I went to get my master's in advanced computer science, computational intelligence, but, what's funny, I didn't know you could change your course. I thought you had to follow your bachelor's degree, so I could have went somewhere else, I could have went to another topic, I could have done so many different things, but I didn't.

Speaker 1:

So are you able to use your degree now in what you do? Not really. So when you got your master's, did you think the opportunities were going to be there for you to gainfully get employment. What changed that caused you not to be able to use it as you thought you might?

Speaker 2:

There weren't many For my particular degree. There weren't many opportunities out there. I figured maybe if I had an advanced degree at least somebody would recognize that I have a degree in the computer field Even though it's an advanced degree, it's still a degree, a master's degree in that field. And they would say, oh, this kid is smart, he knows what he's doing. But it didn't happen. I looked everywhere for computer jobs nothing.

Speaker 1:

Okay, so now you're in your 50s, is that correct?

Speaker 2:

I am 53.

Speaker 1:

Okay, so now you're in your 50s. What obstacles do you see that are in your way? What do you see that you would like to see changed, or what do you see that you would like to see changed, or what do you see that you might be able to change yourself so you can move forward to do what you want to do?

Speaker 2:

I mean, right now I'm in a good spot, but the only obstacles would be finance. I don't have any sponsors for my old podcast and that could be the make or break for me. If I can get sponsorship, that would mean I have income coming in. I would kind of be almost be set for life.

Speaker 1:

Okay, that makes sense. So what are you doing now? You do your podcast. Are you doing other things as well? I just written a book, oh nice.

Speaker 2:

Waiting for that to get published.

Speaker 1:

That's awesome. So what's the book about? The book is about my life oh, that's great.

Speaker 2:

It basically follows me from diagnosis to school, travel, volunteering, going to my first convention life. I have tips, advice. I talk about friendship and knowing the difference between a true friend and a dear friend. I talk about dating and jobs and everything's tied up into one big message, and that is you need to step outside of your comfort zone.

Speaker 1:

Yeah, that's one of my favorite sayings that I use all the time.

Speaker 2:

Yeah, especially if you're autistic, because in the autistic community there are a lot of introverts who say I'm happy where I'm at, why should I step outside? And at the end of the book I say listen, I'm not telling you what to do, I'm not here to hold your hand. When you get old enough, you're going to look back at your life and you realize I should have, could have, would have Right, right, exactly. You're not going to be able to talk to doctors. You won't know what to say. You won't be able to know how to talk to insurance companies. You need to know these things and you're not going to learn them unless you step outside of your comfort zone and take the initiative yourself.

Speaker 1:

So what's your friendships like? Are they pretty balanced between the neurotypical world and the autistic world? So how would you look at your friendships and define them? Is it what you had hoped for?

Speaker 2:

I have very few friends.

Speaker 1:

Okay.

Speaker 2:

I have one good friend who's on the neurotypical side. I have another friend who's not on the neurotypical, another friend who's not on the neurotypical. So kind of balanced, did you say, because I have a few friends, so there's those who are and those who aren't.

Speaker 1:

Well, that sounds pretty normal really. If I look at my circle of friends that I have even though I know a lot of people it still comes down there's only a handful of really good friends. So if you have a couple of really good friends, then I think that's just pretty awesome.

Speaker 2:

I mean, one of the messages I talk about in my book is friendship, and I talk about how a true friend is somebody that sticks with you no matter what.

Speaker 1:

Absolutely.

Speaker 2:

And if that friend tries to change you, then they're not a friend at all.

Speaker 1:

Right, right, exactly. So now you mentioned that you are ADHD. I've talked with several people that are both ADHD and autistic. They tell me that the ADHD will pull them one way and the autism will pull them another way. How do you deal with that? Everyone deals with it differently, so what's your approach to it?

Speaker 2:

With my ADHD and my ASD. I mean it's all a balancing act. I got to figure out how to compensate for my memory problems with my ADHD. I once was told about my ADHD that if you don't use it, you lose it. So everything you've learned gets pushed so far back into your head that it's a struggle to retrieve it.

Speaker 2:

With my autism, it's all about relationships, friendships and how to deal with that and how to keep my friendships without losing them, and it's also more of a social thing. My biggest thing is my social and how I deal with that is my podcast and that's taught me so much. It's brought me so many closer friends all over the world, including you. That's nice, but it's taught me how to talk with people so kind of a give and take with me. I know my autism kind of pulls one way where I need to learn how to deal with this, but my ADHD, like you said, pulls another way where I need to learn how to deal with this. But my ADHD, like you said, pulls another way where I need to learn how to deal with my memory.

Speaker 1:

So now you do your podcast and, of course, you cure yourself. Well, thank you. Does that podcast allow you to transfer what you do on your podcast with people? Then go out your front door into the real world and be able to have a conversation with anyone.

Speaker 2:

Very much so. I am very much like my grandfather or my father, very much of a talkative person. I can walk into a stranger and talk to them. I can be standing in line at a restaurant that's in the busy line and just turn to the person in front of me and go this is crazy. There's only one person at their register and just talk with him for a few short minutes. Or there's a story once where I just got back from school. It's new year's eve, me and my two friends go to this restaurant to eat and there's this guy in front of us getting his order and he leaves and go hey, man, have a happy new year. He's like you too, man. And my friend looks at me. He's like do you know him? I'm like nope, oh, I thought you knew him or something. You knew him from neighborhood. I'm like nope, just to somebody. I'm just wishing a happy new year to good, that's pretty awesome actually.

Speaker 1:

So now, autistic people are known for their meltdowns. They can last 20 minutes or they can last 20 hours. You just never know. Did you have any problems with meltdowns? And if you did, how did you handle it?

Speaker 2:

that's an interesting story. I've never had a meltdown once in my life, except for the time I left for school okay, and I didn't know what it was, until I started learning more about meltdowns and what was going on in my life. All right, and I was fine, fine, fine. Excitement was building up. I was getting ready to fly out to school and me and my mom and dad are at the airport and the guy behind the desk goes. Only one parent's allowed Wuffy to go to the gate.

Speaker 1:

Wow.

Speaker 2:

And I'm holding my cool and my mom's like but he's autistic, he needs us with him and he goes like I'm sorry, but this is the new rule since 20, since um 9-11. So we're arguing back and forth trying to get it to go and all of a sudden I go into a meltdown and I don't know why. I'm crying and I'm. I just can't stop, I'm thinking to my head. I just want to tell this guy off. And mom was like no't.

Speaker 2:

So what happens is my father goes, your mother will go with you, and he and the guy tells us there's a glass gate with a revolving door, with a guard, you can sit there and there's seats on the other side. So my dad sits on the other side. My mom and I are walking to the gate and she goes I'm going to go into the store here and get your dad some some candy and a newspaper. So she's like here, here's the phone, talk to your father. And my dad doesn't know what's going on either.

Speaker 2:

I'm crying on the phone and my dad's going stop crying, you're making yourself look like a fool, you're embarrassing yourself. So I'm crying and crying and my mom puts the paper and the candy in the revolving door, my dad bends it around towards him, my dad goes to pick it up and he falls and we're laughing but I'm still crying and then the gate call comes on for boarding and it's like a light switch flips in my head and I stopped crying and I waved goodbye to my parents and I boarded the plane, find my seat, put my luggage away and I'm talking to the people next to me.

Speaker 1:

Well, it's one of those things where it switched on and then, nicely, it switched off. The thing that I've always heard about meltdowns is you just don't know how long they're going to last. What's going to set them off, whether it can be violent. There are just so many variables about meltdowns, and it's good that you got past it like you did. So what's your family dynamic now? You've mentioned your mother. You've mentioned your father, how they've helped you. This seems like you've got a really good family unit there. Do you have other family members that support you, or is it just pretty much your mother and your father?

Speaker 2:

Well, I lost my father in 2017.

Speaker 1:

Oh, sorry to hear that.

Speaker 2:

It was just me and my mom, brother and his family who lived next door While I was in college. They moved south by my brother. What's nice is my sister-in-law's family understands me because her cousin's son is autistic too, so there's that connection to where. Oh, we has it too, so we kind of understand more about it. I'm a little bit more on the higher end than he is. I mean he's got a job but his mind is more of a child, almost Right. I mean my mom's always worried about me. What's going to happen afterward? But she's gone.

Speaker 1:

Right, that's a very common thing, I hear.

Speaker 2:

My brother has told me listen, when your mom's gone, you don't have to worry, you'll still be able to live in the apartment. I'll just take the money that mom has put saved up for you. You take your part of the rent and then you try to use your money to survive.

Speaker 1:

Well, that's great. At least there's a plan there.

Speaker 2:

Yeah, I have a plan.

Speaker 1:

That's very good. A lot of people don't have a plan.

Speaker 2:

Yeah, I mean, the biggest problem is, I mean, you can't live off of SSI.

Speaker 1:

Right.

Speaker 2:

Just not enough money to live off of.

Speaker 1:

Sure.

Speaker 2:

I mean that's not enough. So I'm hoping something will happen between now and then, maybe with my book, maybe I'll get a sponsor, so that will be added money on top of that.

Speaker 1:

Sure, sure. So what's your goals? You're in your 50s, you've got some plans. You've got a lot of things you're hoping for. Where do you see yourself in the next five years? What's your next step?

Speaker 2:

My next step will hopefully be to have a long-term sponsor for my podcast and be a successful author, having my book being picked up everywhere, possibly going around talking about my book going to bookstores reading from it.

Speaker 1:

That's great. So what's the name of your book? It will be called.

Speaker 2:

Outside the Comfort Zone.

Speaker 1:

That's a great title. I really like that. Okay, so the next thing is how do people get in touch with you? They want to be on your podcast, they want to buy your book. Just find more information about you.

Speaker 2:

They can go to AspergerStudiocom, then you can go over to work with me and right there they can email me and then I'll send them a link to schedule a booking date. My book is in the editing process right now. I'm not sure when it will be out. I need to find a publisher.

Speaker 1:

Yeah, it just takes a little time, you'll get there, so let's fast forward a little bit. You're standing in front of an audience. You have people that don't know much about autism. They know some, but they want to learn more. What is your statement to them and what are you telling them?

Speaker 2:

I'm going to talk about stepping out of the comfort zone and how important it is, because life doesn't stop for nothing. We only have one life. We need to live it to its fullest, because the minute you stop and sit there and cry, I can't handle it. Life ain't going to stop for you, it's just going to keep going. Your family will go, I mean your parents will die, you will be alone and you'll be left with what am I going to do with my life? I've never done any. I haven't done anything. I mean, I want everyone out there to know that your life is a roadmap that you create. You put the destinations in by doing things, and I have a saying in my book that goes an experience is an experience, whether it's good or bad, no matter what you do, no matter how bad the experience is, it's still something you've done and that's the important thing.

Speaker 1:

Yeah, absolutely. I like that Very good point and what you said. It's very fact-based. There's nothing in it to deny. I really like that. It's a harsh world out there and sometimes in order to be successful you have to step outside of what you called the comfort zone, and if you don't, it could bite you right in the butt. So what is one of the hardest things that you might find living in the autistic world that you might tell some people about?

Speaker 2:

One of the hardest things about being autistic is people will realize that there's two sides to a coin in the autism world in two different ways, the two camps of the higher functioning and the lower functioning. And I've learned that there are those who are higher functioning who want nothing to do with the lower side, and I talked with a lovely woman and she's like I don't get it. The higher functioning will not deal with them, but yet we're all part of the same family. You're all autistic. I just wanted people to know that hey, listen, you're not alone in this world, either if you're a parent who has somebody who's autistic, or you're autistic yourself if you're a caregiver. You're not alone in the world. Don't feel like you are.

Speaker 2:

There are millions of us out there who are advocating, who are trying to help those and get the word out that you are not alone. Our country needs to change the way it treats those who are disabled. I have talked with some with the uh, the assistant minister, minister of autism in Australia. They do so much more for their, for their people who are autistic, than we have ever done for our people here. I mean, that's the big thing I've talked with people about. It's just a label. If we eliminate the label, everyone would be so much better off.

Speaker 1:

Oh, I definitely agree there One hundred percent. This has been a great conversation.

Speaker 2:

I really appreciate taking the time to come on to my podcast. Thank you very much. I mean it's an honor coming. The pleasure has been mine.

Speaker 1:

Thanks a lot, it's been mine. Thanks a lot. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantorcom Contact then they can give us their information so one day they may be a guest on our show. One more thing we ask tell everyone everywhere about why Not Me, the world, the conversations we're having and the inspiration our guests give to everyone everywhere that you are not alone in this world.