Diverse talk

Embracing the stims & validity in self-diagnosis

June 04, 2021 Angie Season 1 Episode 4
Diverse talk
Embracing the stims & validity in self-diagnosis
Show Notes Transcript

Support this podcast: https://anchor.fm/discoverspectrum/support.     

Wanting to be accepted or heard is a universal experience and desire.           
Understanding ourselves can be one of the ways we connect with others.                           
My next guest Justin, is doing exactly that.    He created his own space in the Autistic community and shares how stimming is completely natural. Along with words that are felt and create awareness of the neurodivergent experience through poetry  We talk about being parents, social challenges and relationships.                   
This was a really flowy talk!       

Justin (@intoautistic)
Blog piece for parents:
Starting assessments in Canada:
Starting assessments in the United States:

Leave me a message commenting on this episode and what diverse talk you'd like to hear on Diverse Talk!   
 If you would prefer to write or use an AAC device or sign the message, leave me a dm here: Angie Elena (@discoverspectrum) • Instagram photos and videos discoverspectrumfamily@gmail.com)             
  Disclaimer: Please note that from these sites there maybe a general directory of centers and places that are recommended. Please do your own research to ensure the safety of yourself or a loved one seeking services, as a lot of these orgs only want to exploit you and your family and may cause long term damage to your mental health by working with centers and places who try to surpress behaviors, and recommend harmful methods based off the belief that diagnoses like Autism needs a cure and believes a different neuro type is something you can change. 

Support the show (https://www.buymeacoffee.com/DiscoverAngie)

Angie- Welcome  0:00  
Today I'm talking to Justin who is in the process of getting a diagnosis for autism and identifies as a self diagnosed autistic person. He comes to talk with me about his experience as a neurodivergent parent, what his relationships mean to him and the experience of embracing himself.  proceeding in one, two......

Angie  0:00  
you started your account, like six months ago, as I started reading your posts and started just diving in, because I really like your I really like your videos and between the music and what you have to say or caption, I can relate to it and it kind of like sucked me in because I'm just that intensely involved. How have you felt like through this process? What has changed?

Justin  0:21  
Yeah, for sure, I guess, for for quite a while I just like I was following a lot of other autism accounts. And, you know, I learned a lot about myself and I finally related to people for the first time, that was kind of amazing. And I had been wanting to start mine for a while, like, I've been making videos my like most of my life. So maybe that's why they seem kind of connected and seem well put together. Not that I'm like, I don't think I'm an expert at it or anything, but it's something I love. And that's something one of very few ways I feel I am able to express myself. And I was nervous to start my account, because like, I'm still in the early stages of my official assessment. So I didn't know if I should wait until after that. But just the amount I was relating to others, I just really wanted to do it. And also, social media has always been a very confusing thing for me, I never really knew how to use it until I had this account, because it makes sense to use it because I have something to say. But before that, I guess like just the social part of social media never made sense to me. If there's a reason and something I care deeply about that I have a lot to say and share, then it makes sense for me to do.

Angie  1:33  
You You seem comfortable, like doing the video. So I feel like that's why it may just lay smooth over me, you know, and I like watch it and it just feels like something familiar. That's probably why. So that's interesting, too, though, thanks for sharing that. Yeah, yeah, I could I could totally relate to how confusing social media could be. And there's a lot that's changed. And I think what's changed is that there are certain platforms, you can like, use your voice. You know, it's just a form of advocacy for me and mine. Do you feel that way about disability and Disability Justice?

Justin  2:10  
Yeah, definitely. I guess for me, the biggest part is just the expression, being able to express so many things that I've never been able to express before just finding so many others that I relate to, and they relate to what I have experienced. And I guess that's, that's the biggest thing for me,

  Angie 2:29  
it's hard to do that in person, because there's so much going on that you really, I mean, at least for me, I feel like I can't get to the point, I often lose myself through my conversations, because I have so much to say. And I'm like opening all these tabs, as I say, posting on social media allows me to take my time to focus on this one point, and then be able to interact at my own pace with other people as opposed to being in person, everything's right there, you just got to deal with it. And that is just Whoa.

Justin  3:02  
I like most if I'm speaking in person, I can't even see. But I've always been able to express myself through writing and like, through through videos and and such. But yeah, that talking talking in person is is really rough for me is not a smooth or thorough process. Because there's there's just so many outside sources of distraction. And also my thoughts go so much faster than I can articulate them. Yeah.

Angie  3:35  
Some of the things that I couldn't relate to was masking you, you kind of say like there's a limit for you, like can't mask as much as society's expectations. So how has that been throughout your life?

Justin  3:47  
It's definitely a lot of social isolation, I'd say was the biggest thing that came from that because I can only I can mask to a certain point but there's never a time when I don't seem different no matter how hard I try and sometimes I try really hard and other times I don't at all I just I've always been other I don't fit in I don't really know how to relate to most people and there's definitely a lot of self loathing stemmed from that and a lot of depression meltdowns panic attacks severe anxiety has come from that there's been very few people ever that I've formed you know close relationships to and also I know interaction that I have with people goes smoothly in person I'm usually phone calls are one of my biggest like triggers for just not being able to handle stuff but and usually like I'll be sick to my stomach like all day, but I haven't it wasn't like that for this. It was so really Yeah. I think like where we've like communicated some and like We have similarities that has made a big difference and like it's talking about something I care deeply about. So that helps a lot to

Angie  5:07  
cool. That's good to know that that's actually an honor that you feel that way. Yeah, you know, what we go through socially. It's not fun. It's hard. When you have that moment where you're able to just like talk to someone, and they're just like, Yeah, dude, you don't even have to explain this. I know, you're just like, it's a golden thing like that first time that I read a post that I could really thoroughly relate to, as a neurodivergent. Mom said things in such a way, you know, it helps that she's poetic as hell. But she really laid some stuff down. It wasn't opposed, like trying to have people on her side. This was her experience. So and I've always been a big advocate about, you know, if you have an experience, at some point, at some capacity, you can help somebody else. And I started for those reasons. Myself, one of the things I think I could really just grab on to our words, because I'm really good at writing words as opposed to speaking them. And it sounds great, you know, as I get a flow to it, but there's a lot like there's comfortability, there's rapport, all these other things that have to be involved for me personally. But writing is something like if somebody can write and touch, something that I've been through, or I'm going through, or I could really relate to, that's like something powerful for me. And that's, that's, I think, that's why I really wanted you to come on and talk to me as I get to talk to this person, because you're writing the poetic things that you you share with us. It's just like, I get it. I want to thank you for like sharing that because I can't put it out there. I just I'm not ready. Thank you very much. Yeah.

Justin  6:46  
I think that's like, maybe part of like, where I can't mask it out to is that I'm often only know how to be like raw or vulnerable. I'm not really that good at hiding that or not being that I either express myself to sincerely and earnestly or I just completely withdraw and don't talk or interact with anyone at all. Or, like I'm either too sincere and serious or too silly or non existent.

Angie  7:15  
Black and White, no middle ground. Just get what you get today. Yeah, some days are better than others. So good luck. That's one of my favorite things is like seeing one of your videos, one of your reels on Instagram, just like tie in with the music. Do you do that on purpose?

Justin  7:33  
Oh, definitely. I am hyper hyper aware of that. I wouldn't be able to share something if I didn't feel like it was exactly as it should be. It has to match. And it has to be a cohesive idea like that.

Angie  7:43  
Right. I totally get it. I think one of the things that you shared was about dating prior to being with your wife and having a family as a neurodivergent. parent, do you find things hard? Like with parenting? Do you have any of those experiences?

Justin  7:59  
Definitely, parenting is something I love so much. But it's for me, the most difficult thing is the sensory aspects of it, it can become very overwhelming and definitely chaotic. Like he said, constant touching or sound, or things like that are really triggering for me. But I also feel like I have a lot of advantages as a neurodivergent person, because I feel like I don't like most other things. I don't, the only people I really want to spend time with is them. And I see lots of families where it's not like that. I have incredibly strong bonds with my my kids and my wife, and not very many other strong bonds. Parenting is one of very few things in my life I've ever been sure of. That's something I constantly want to be the best I can at it. But I feel like I'm pretty good at it. It can be very overwhelming. I'm exhausted, I can't handle being touched. Say that's one of the biggest things I struggle with overall parenting and being a father is one of my favorite things in all of existence.

Angie  9:05  
I call parenting raising myself, because I see so much things that I've done kind of hits me in the face off guard a lot of the time because my son will do exactly what I would have done. And I'm just like, shit, this is this is on, you know, a lot of us have the energy to even exert to talk about these things. Because throughout our day, it's it's full, and it's sometimes very exhausting. And I think we don't normalize that a lot like they're in the parenting world period. Overall, across the board. There's this thing where you can't express that you can't say I'm tired. You can't say you know, I'm burnt out. I'm going into a shutdown. Being a parent and

Justin  9:45  
a husband is my greatest comfort. I like having you know a role and people that need me even though it can be a lot and yeah, I often don't understand a lot of things. We are supposed to do that makes sense to me to love these people and try to nurture and support them. And, and I, I like that a lot.

Angie 10:09  
Oh, I'm really happy for you. But I think Yeah, like you said, we have an advantage. I never not feel like I don't understand what it's like to be a kid still, just because so much has not changed.

Justin  10:22  
That's I I talk about that a lot with my wife, I feel like I have so much empathy for kids in general, but and especially my own kids, I just, I've been misunderstood. And not knowing how to express myself properly my entire life. So I I'm like hyper aware of, you know, kids trying to express themselves or like, I, I'm just so aware of their emotions and not wanting to invalidate them. I want them to know that I'm always going to listen to them, and let them try to explain themselves. And not just, you know, I tried not to, I'm not perfect, and sometimes I get frustrated, don't have patience. But a lot of the time, I have so much patience to try to hear what they're trying to express. And that's really important to me, because I know how bad it feels. And I also very much still have, you know, a lot of like childlike silliness. So we have a lot of fun to how did you and your lady, we met online? Yeah, we met through like plenty of fish. And I had made an incredibly long, like several paragraphs long, incredibly detailed and like weird, roundabout philosophical ramblings and my special interests and like movies and stuff and music. The first thing she said to me was, she just listed three of my favorite bands that I had mentioned and said, they were awesome, and put a smiley face and I was like, Whoa, that's amazing. We started talking a lot. And we met in person eventually. And she was just so cool. And she knew Never once did she think I was too weird, or anything, or she's just really awesome. The first time we met, we spent like, 12 hours together, walked around, I took my socks off and lost them. We went and saw a movie. We saw the Sex in the City movie. Which one? The first one? I'm a fan of the series. She thought that was funny, because she's like suggested, like all these like action movies and stuff and was like, No, I want to see the second city movie. I think right away. She liked how I was different than maybe anyone she had ever met. That was like 11 or 12 years ago. And we got married and started having children fairly young. I think she was 21 when we got married, and I was 23 or 24. And our son was born six months later. And now we have an eight year old and a six year old. Okay.

Angie  12:40  
starting to fade out of that age. I have Jake he's 10. Ethan is one. So I'm like kind of starting over? Oh, yeah, for sure. But it's nice. It's nice. It's nice to hear somebody else's story too. As far as neurodivergent like relationships, I don't think anyone in the world would be able to shrug off a whole meltdown coming from me. And Owen just does it with like a lot of grace and patience. And he's just like, I don't take it personally anymore. And that's great. That's a very comforting place to be

Justin  13:11  
to be fully accepted by someone is mind blowing, because that's not something I've ever encountered, often a few times, but yeah, it's special when you find it. I always think like my wife was filling out her section of my assessment questionnaire. Like there's like the questions and they're like reading. I read through her through her answers. And I was just laughing so much because like they were so accurate just reading it on paper and then like imagining she loves me and like is married to me and is happy about it. How hard a lot of them are supposed to be seemingly normal things are for me, but she still loves and accepts me and that's really hard to wrap my mind around. Sometimes.

Angie 0:00  
You know, it's got me where I am today just talking to you and talking, just making friendships at whatever capacity I do make friends. And I'm not guilty. Like, I don't feel as guilty as I used to about making online friends. It's like, this is what I can do.

Justin  0:16  
Yeah, I probably been years since I've actually made a friend. But since starting my account I have formed, you know, I'm also hesitant to call people friends, because it seems like such a significant or important word, I've definitely made some friendships through starting my account. And it's been really nice. Like, these online friendships have been so rewarding, and there's so much easier and more manageable for me. And, you know, it's so nice to realize that that's fine. And okay. And it's such a valid form of friendship, yay.

Angie  0:52  
I finally accepted that back. And I do have one in person friendship, it's a really hard thing to do. Um, but I have obviously, just have the one and online and, you know, people are just living their lives and finding just the few people within the community, but like, you know, you really connect to so many things. I find that the people that come on, talk to me here on diverse talk, I think there are people that are, you know, for the long run, you know, we're kind of all in this doing our own thing together. Yeah. Um, the way it was always for us, and I think a lot of what's happened in the last few years across the globe has changed people's mind about how it is for people with disabilities in whatever way just a social life to parenting and having a family and I think a lot of, and I'm not saying everything, because a lot of shit that's happening is complete and utter bullshit. There's always going to be chaos with a lot of bittersweet lesson, and I think gave a lot of people insight to understand people with disabilities at the same time. Like, oh, shit, this is what it feels like. Yeah, this is exactly what it feels like. And complain about it at a distance. Yeah. I think that's one of the biggest things that I enjoy. It's that I don't have to be a certain kind of process for anybody. I could do it, how it How often? And however, and then I have the black button. So that's nice. Yeah. Yeah, it's been really cool. Getting to know you. And like, I think really humbling that, you know, you can talk because a lot of times people, even online, it's really hard. A lot of people have different traits have different things going on for them other diagnoses, which is really hard. It's a privilege to be able to do it too. But we can do it because this this is, this would be really hard. I found with starting to homeschool. And you said you were homeschooling your kids know how hard that is for the kids. But also for kids that are neurodiverse or with disabilities. It's almost kind of relief. I mean, not the school aspects of things, but just the fact that there's not all these things, telling them who they are and labeling them and telling them. You know, there's limits to what you can do. And I think that's been nice about homeschooling, Jake,

Justin  3:14  
our our homeschooling is like COVID gotten bad in our province again, so a lot of schools have shut down. But homeschooling is something we've always kind of talked about thus far, I've been really enjoying it. And I think my, my wife struggles with a little more, she kind of needs more time for herself than I do. Even though I need a lot of you know, quiet time really enjoyed the structure and routine of our days. It's allowed things to move a lot slower. And I really like that it's been really enjoyable. So far, right, which is not what I've heard from many other people, a lot of others I know, in our province have been having a pretty hard time with it. Something about it really, really works for us.

Angie 3:57  
Yeah, it's not something that everybody can do. I was recently talking to my mom who started to try to have my brother homeschool. He's, I think in high school now. He is possibly neurodivergent. And there's a lot of struggle there for my mom who has a different situation. So, you know, you know, she told me she's like, yeah, homeschool is definitely not for everyone. One of the advantages, I think, though, is a lot of the misinformation at least here in the States about what kids do learn and what is valuable to, you know, learn and what school really is. I really struggled in school because I thought a lot of this stuff the farce, you know, so I was like this, this structure is just and as I got older, it was just so much harder. And I wanted so badly to have a certificate that said I succeeded at something. And that's all I really wanted. I didn't really care about learning any of this stuff, because I was like, This makes no sense. Yeah. Being able to homeschool Jake Reduced so much of the worry having my kid in a system where they're going to teach things that are against representation, I find representation matters. And I'm able to implement that, you know, talk about people like us and people across the board who don't get hurt, you know, through a lot of what we're being taught, or what we're supposed to have inputted in us, if that makes any sense. I find it great, because we do talk about autism, when we did talk about ADHD, OCD, and it's hard thing for my son specifically to understand, because he sees me melt down and he has that balance, etc. Do you find like that you make time for that to like, you talk to the kids about neurodiversity? autism?

Justin  5:47  
Oh, definitely. Yeah, it's, it's something I very openly talk about them with, neither of them are diagnosed with anything, but they both have a lot of traits. And it's something you know, we've been considering, kind of once I'm through completing through my assessment, and we'll kind of go from there to see about them, you know, they know I am autistic, they know what it is, they know that there's, you know, that it's an entire spectrum, they, when when they weren't in the public school, they had kids in our class who are autistic, and they been able to see like the different, you know, levels of, you know, the varying degrees or whatever, of, you know, abilities or support needed. And I something I really admire about my children, and is, you know, how open they are to all people and things, you know, we we talk about, most most things really openly with them, and they, you know, it like myself growing up, it never occurred to me to dislike or, you know, think less of anyone for any sort of difference, you know, any, any way they were different from myself, that's something I'm glad I've been able to pass on to them. That's pretty cool. We always, you know, make sure to tell them, like, yeah, you guys are great.

Angie  7:04  
As I become an older, you know, having a gap in between my kids, when I started parenting, it was not like that, I was totally scared. I was like, I'm gonna mess these kids up, like, I'm not gonna do this, like, I couldn't explain my emotions when I was a lot younger. And that's why I learned so much through people online. I mean, no doctors were talking about alexithymia, you know, and those sort of traits, like narrowing it down. And so many autistic people in the community are the ones educating people on these things, then connecting people, and everything just started flowing. For me, when I when I was able to understand, like, a lot of the times the frustration I used to have as a parent, I have this amount of love, but somehow it's just not getting crossed. It's not working. It breaks people's and I mean, it broke me a lot of the time, not being able to express myself to make it. And now pinpointing those things, it's gotten a lot easier, like I'm more aware, because I know this about myself. Yeah. Um, have you been to the assessment yet?

Justin  8:14  
Nope. I had a call with the lady that is going to be doing it the other day. And she sent me my like, you know, his development history and like some questionnaires and stuff. It got. I was supposed to have it a couple of weeks ago, but it got pushed back due to the restrictions because the COVID he scheduled as of now for until June 5. So I am really looking forward to that.

Angie  8:43  
Do you think it'll change anything getting an assessment? for you personally,

Justin 8:48  
I'm, I'm very, very confident in you know, all the research I've done in myself, like I've never made sense before Intel of what autism is, and that it is everything that I am. But I unofficial assessment. I just, it's just something I really want. It's something I feel like it'll just finally even though it's not, you know, self diagnosis is fully valid. I think I just, it's just something I really want to like fully make myself Sure.

Angie 9:21  
If you need it, you need it. And if you don't, if you can't, all of those things are valid. Yeah. I 100% agree. That's great. Um, it's been really great talking to you. I feel like you've you you said so much that is going to resonate with so many people. I appreciate you coming to talk with me today. Diverse Talk.

 yeah, I know it's it's been really fun.

there was  an immense connection to a lot of the experiences in what it is like to be a neurodivergent parent and what life its like is making connection with ourselves and others. do you identify as a self-diagnosed Autistic? does it feel hard to do so without a clinical diagnosis? you can share your experience here or a review about what you processed in this episode wherever you are listening to this podcast. i encourage you to follow Justin @intoautistic on instagram as he is creating his space to embrace his Autistic experience through vulnerable writings and poems. be sure to check show notes for links on how to support and how to connect with me further

Transcribed by https://otter.ai