EP01 - I just found out I'm Autistic, now what?

Discussing what to do after we realize we are Autistic, navigating that rollercoaster of emotions and how to move forward with this new information. Music: “Theme 27, Version 2” by Joe Kuta published by Jos. M. Kuta Music Publishing, BMI. Episode transcript: https://bit.ly/3rUNVgX

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Transcript

The Autistic Life Podcast

EP01 Transcript

Hi friends! Welcome to the first episode of The Autistic Life Podcast.
And I am not scared. I am. That was a lie. I'm sorry. I should not start my podcast with a lie, but I am scared and I am anxious and I don't know why, actually. But let's be honest about that. So yeah, I think I may have been delaying this because, I don’t know, my perfectionist brain is... I feel like it's a very good thing for so many things but for others, it's just a nightmare because it has prevented me from doing so many things that I actually wanted to do. And I know that I would have enjoyed doing and the result at least wouldn't have been terrible, but yeah just... perfectionism, I don’t know, it freezes me sometimes. I record these things... no idea how many first episodes I’ve had but this is the one that will be posted because that's how I'm doing things. If I’m not forcing myself I know that it's just not going to happen. So yeah, this is the first one.

First and foremost, I really want to thank my — hopefully the first of many — my first sponsor for this podcast, which is Tiimo (https://www.tiimoapp.com). For those of you who don't know, Tiimo is a paid-subscription app that does so many things. It helps you organize your life. It helps you build a routine. It helps you work towards goals and habits, through a visual aid whichi is great. And it's my favorite part of it. Yeah, it's amazing and they have kindly offered to sponsor this podcast, which is amazing. So yeah, if you are looking for an app to help you create routines, and just keep up with everything in your life, you should definitely check out Tiimo.

Okay, so... today’s episode, the first episode, I wasn't really sure what I wanted to talk about as the first topic. I don't know. I feel like first times are weird... in all senses. So I was like, “what's one thing that I wish, when I first got my diagnosis, I don't know, someone would have said or whatever share with me” and this came to mind like instantly. By the name of the episode you probably know that I’m talking about “What to do after you find out you’re Autistic?” Like... what do you do with that information, right? I think that late-diagnosed Autistic people don't always know what to do once we get our diagnosis or we realize that we are Autistic through so much research we know that we are capable of doing. So, it's like... for example, in my experience, I remember getting my diagnosis and the psychologist that diagnosed me was like: “Well, yeah, you’re Autistic!” and I was happy but I was also like “Cool! What do I do with this information?” and I think that, looking back, it was very Autistic of me to be like, “hey, please provide some instructions so I know what to do with this” and she was like “whatever you want! Share it with whoever, do whatever.” So yeah, I have to admit that I was lost for many many weeks because it was... it was such a hit. Not because I felt like being Autistic was a bad thing, but it's just... it was very confusing to have spent twenty-seven years of my life not knowing this part of myself. So, I was like “uhm, I should revise everything about me now that I know this information.” So, it was confusing and the fact that there... well, not nowadays... I feel like there’s so much now, and this wasn’t so long ago, it was two years ago, but I feel like there wasn’t or isn’t that much information specifically about like “what do I do now that I know this?” and I felt lost. So yeah, I didn't know actually who should I tell, how to get help for the things that I was struggling with, it’s just... it was very very confusing. And there was also all of these feelings that came up post-diagnosis because I feel like suspecting that you might be Autistic as an adult is a roller coaster of emotions © THE AUTISTIC LIFE 2

on its own because it's like... you go through all of these series of processes like: “No way... but this explains a lot”, “No, no way. There's no way I’m Autistic” and then you continue to do your research and Autism starts to explain so much. And I feel like... that alone, it’s such a rollercoaster. And then coming to terms with the fact that you are Autistic, that’s another roller coaster of emotions. For me it was very... I feel like there was a lot of grief, in my case. Again, not because Autism was a bad thing or because I received it in a bad way. Actually I was so happy because I knew... I knew that something was going on and I just wanted to get a diagnosis. I remember saying to the specialist like: “And if it's not Autism I want to know what is” because I knew that something was going on. I knew that if it wasn't Autism it was something else. So, I didn't really care much about like... there was no negative feelings towards that. But the feelings were towards like... “Man... if I had known this it would’ve saved me so much trauma and so much trouble and so many things, so many things. At first I felt very hurt and then I felt angry and then I sad, I just... I went through another roller coaster of emotions. Mostly because of that. Because if I would have known that I was Autistic, there are so many things that I would have done differently and it would’ve explained so much. It wouldn’t have made me feel like there was something wrong with me. Like, it would’ve explained things. Why I felt so weird, why I felt like an alien, why I didn't fit in. It would explain so much. Yeah, and then I felt anger because what the hell no one noticed? It's just... I started to go back and to all the moments I definitely definitely displayed Autistic traits and no one noticed. No one suggested it. For example, and this is an anecdote and I can look back and laugh at this is now like “that was so Autistic.” When I was like 8 or 7, something like that, I was in... I was a kid, we had a lot of written assignments. We needed to come up with a story or something, and my stories would always always end up in like a very dramatic thing. Kind of like a horror story. All the time. Because I was obsessed, and obsessed as in special interest... I was obsessed with “Goosebumps” stories. Like the TV show and the books. It was a massive special interest of mine while growing up. So everything was haunted and everything had ghosts and someone had been kidnapped and all stories were like that. I remember thinking about that and telling my mom like “hey, no one ever called you to say ‘hey, you know what, your daughter keeps writing about ghost stories and things that are kind of dark for her age’” But yeah, no one reached out. And that’s just one thing from so many. I felt anger because oh my God, no one noticed. And yeah. And then the whole explanation thing I said earlier. It would have explained so much and it would have helped me with my self-esteem and it would’ve made such a difference. But yeah, so that’s one thing that, from my understanding, I feel like it’s very important to do. Whatever it is that you are feeling now that you found out that your Autistic, I think it's very important to explore whether that’s... however you can. If you can do it with a therapist, that is also definitely definitely it's going to be helpful. But if you can't afford it or you just don't want to maybe writing about it or just... try to process it because it’s a lot. I’m a person that... I go to therapy and I love going to therapy but I also have this thing that... I only see my therapist once a week and a lot of things happen during the week, but I'm lucky enough to have my mom and she lives with me and whenever I’m going through something I can talk about it with her. And the fact that I can say it out loud it’s just incredibly helpful and it helped me process so much of it. So yeah just even if it’s anger or it’s just sadness or grief, or whatever, just talking about it and expressing your emotions it’s super helpful and it can help you integrate all of this new information better. Which is one of the reasons why I started my account in the first place. Because I started my account like three months after my diagnosis because I had a partner back then and apparently I was talking way too much aboutAutism because it had become a special interest — and it still is — and apparently I was talking too much about it. So I talked about it with my psychologist and she was like “oh, I feel like you should start journaling these things so that you don’t go around through life monopolizing conversations about Autism.” So I thought about doing that and I was like “uhm, I’m gonna do it on Instagram and it’s just me. If someone wants to follow me great, and if not also great. I’m just doing it for me. And then became what it became. Thank you so much. So, yeah, I feel like that can be very helpful to process. Whatever comes up after getting that diagnosis. Whatever it is. Honestly, there's just... there’s no fixed way to feel about this. It's just... it’s a lot. Let’s just put it like that. It's a lot to grow up, whatever amount of years like have spent on this Earth and then receive this information that just changes everything. It's though and I feel like it should be processed so that you can go through all of this acceptance journey better and more smoothly.

Another thing that I did, after processing all of that was... “okay, now I’ve talked about all of these feelings that I have. What do I do with my diagnosis?” And what I did was to retrace my steps. And for me that meant going back to the reason why I sought my diagnosis in the first place. And in my case it was that I was completely lost. I had entered a very low point in my life after my... Sorry before my diagnosis. I wasn't doing anything with my life. I was 27 and I lacked interest in everything. I was in a relationship that I didn't like, I wasn't doing what I felt fulfilling, I didn't know what my purpose was. I just I had no idea. And the relationship with myself was awful awful, so awful. I had anxiety. Like, so bad anxiety. Just I used to have panic attacks like... take three to four panic attacks a day. So, it was very hard witch. After my diagnosis I realized that a lot of those panic attacks were actually meltdowns, but I didn't have the language to call them meltdowns so I would just call them panic attacks. And yes, so I remember sitting and I was like, “okay, so the reason why I asked for help was because I was feeling X, Y and Z about my life so let's try to figure that out. Now that I know this information I feel like I'm better equipped to do it so let’s do it.” I feel like going back allows us to meet that initially need that we had that made us question everything. That pointed us to doing all of this research and getting a diagnosis and talking about it with someone. I feel like after talking with so many late-diagnosed adults, one thing that we all seem to have in common or at least most of us, is that we went through like a breaking point that made us ask for help, that ended up giving us an Autism diagnosis, realizing that we are Autistic. So yeah, the fact that we asked for help or we felt like we couldn’t move forward the way that we were, I feel like it can help us know what to do with our diagnosis and how we can start rebuilding ourselves with this new information. In my case, and I know this isn’t the case for everyone, I had my diagnosis and I went through the entire 2019 tearing my old self down and rebuilding my new self. And personally I really needed to do that because I was completely neglecting myself in so many ways. In so many ways. So I really needed to tear all that down, but I know it doesn't have to be a case for everyone. It's not like you realize you're Autistic and you just have to get rid of everything in your life. That was the case for me because there was just so many things that were just not working and I really needed to start over. Going back to that place to what made us sought a diagnosis can also be another thing we can do once we realize we're Autistic, just so that we know like what to do with ourselves. I also think that working on ourselves to meet that initial goal can bring back a lot of autonomy and empowerment that we may have lost throughout our lives. I know that, in my case, it was something that happened. 

In the last couple of years before my diagnosis I had started to shrink and started to belittle myself and allow others to belittle me so I was getting smaller and smaller. And I would, no matter what I wanted to do or what I thought about things, I would just always ask someone else if it was okay. I had lost that. I had stopped believing in myself and I had stopped giving myself credit and I was always relying on someone to check if I was doing things okay, because I felt like my judgment wasn't correct or wasn’t — I hate this, this — “normal.” Yeah, I had gotten to that place where I was like: “Oh, yeah, I'm definitely not normal because this person has said it and this person has said it” and my ex-partner used to tell me all the time “You are not normal, you are not normal” so it was kind of drilled in my brain. So, all of that negative self-talk it just... it made me doubt so much on myself. So working on myself and tearing all that down and starting from scratch, knowing that I was Autistic helped me get back to that place where I felt confident with my choices and confident of what I thought and what I wanted to do and say and choose. Because I know that there wasn’t anything flawed about it. It was just me. It was different. So, yeah, I think that working on ourselves it can really help bring back that that we may have lost after years and years of neglecting ourselves or listening to our environment and just internalizing the fact that we are different and maybe awkward and so many things.

It also allows us to start over from a place that feels in alignment with who we are instead of being in alignment with someone else. That was the case for me. For so many years of my life, especially the last ones before my diagnosis, I was living according to someone else's terms. According to someone else’s perception of what’s normal and what I should do and what should be done. That was the main thing that totally totally made me want to start to shrink myself because there was just no room for me. I had all of this pressure of being whatever people thought that I should be, that it was the correct way to be. So yeah when we get our diagnosis and, again, we go through all of those initial thoughts and feelings, working on ourselves can really really help us start over from a place that you’re like “Yeah, this feels like me.” Because of masking and just honestly, rediscovering ourselves, we might not know what “me” looks like. I also went through that. But the tearing and rebuiling part also helps us explore that. “I think I like this” or “yeah, I don't like this. I'm not like this.” For a lot of 2019, I just I spent it like moving back and forth from different things, trying to find what fit for me and what was in alignment with me. It was also very very helpful and made everything a lot easier and it helped me integrate my diagnosis.

Another thing that I think that it's important, especially for late-diagnosed Autistic who struggled with having friends growing up, or making friends or keeping them, or just socializing in general. That was the case for me. I didn't have any friends. I just I had a few friends, but they wouldn’t last me long. And things would end very badly, super very badly because I felt like I didn't connect with them. I felt like I have nothing in common with them which was true! They were completely different people. So, I think another thing that it’s really cool and also a very positive thing that a diagnosis might bring is connecting with one another. Connecting with the Autistic community. Connecting with other Neurodivergent people because connection and talking about things and relating to one another's experiences brings self-acceptance and brings self- compassion and it also brings validation. That's one of the reasons why I always always start my posts like... my caption like: “Can you relate?” I always say the same thing because one: I really want to know if you actually relate to what I'm saying, to my experience, but also because... for example, so many of you comment and be like: “I had no idea experience this until I saw it written. Yeah, this is me.” And that's amazing. Like the amount of validation that brings is amazing. And I experience it with other people’s posts too. And after spending so much of our lives thinking that we are the weird ones, that we are the ones that are not normal, the ones that didn’t fit in, connecting with people that had the exact same experiences or similar experiences it's like a warm hug that you didn't know you needed. That was the case for me and I still get it when so many of you comment “I thought I was it was just me.” I always laugh at that, in a good way, because before I started my account and before having Autism diagnosis, I also thought that it was just me. And then I realized that there's so many of us that also thought that it was just us and that's why it's so important to make connections and share our experiences because even if you’re like “this is... this is definitely just me. It's only just me that I struggle with this or that I find this challenging” when we share it and we put it into the world, we meet other people they're like: “Nope. Yeah, I do it too” and it's great and it really really brings a lot of self-acceptance and self-compassion that... it’s not something that you can get anywhere else, I think. It shouldn't be the sole thing. Like, the only kind of support you should have. But I feel like it's a very big part of it. Connecting with peers, finally connecting with peers for many of us, can be very healing after so many years of feeling like you didn't fit in with anyone. Yeah. I think that's another thing that's very important to do after figuring out we’re Autistic. Connect with others and share your experiences, if you feel comfortable or not, you don't have to but yeah, I feel like that's also something.

And if you think about it, all of these things, what they are helping you do is to reach to that place where you can trust yourself again. I was talking to my psychologist last week about this and I was telling her about how I don't always know how to put things into words. Like, I don't know how to call the things that I feel or just like I can't articulate them. And she asked me “but can you tell the difference between something that you want to do or something that you don't want to do, like do you get any way of knowing?” and I was like, “yeah! I feel it in my bones when there's something that I don't want to do, I just I have a ton of different sensations in my body” and when it’s something that I want to do, I also feel another zillion things. And she said that I don’t need to be able to put it into words if I trust that. and I know that if you are listening to this, regardless of your neurotype, to be honest, if you're listening to this, you can definitely think of moments you had in your life when you were like: “I have no idea why nor proof of it but I know this is going to be terrible” or the other way around, “I don't know why and everything seems to indicate that I should not do this, but this is going to be great.” Like that gut feeling, that intuition. I feel like many of us just, at some point, maybe we stopped trusting it because everyone was telling us like “no, you shouldn't trust yourself because you are always the weird one.” That was a case for me. At some point, it was just so many people like “no, you're wrong. You're wrong. That's not how it works. That's not how it is” that I was like, “Okay, I definitely can't trust myself because I’m not like everyone else so I definitely shouldn't trust myself.” But after our diagnosis and all of these things that I mentioned, I feel like they all help us move to that place where we can trust ourselves again and trust our bodies and trust our brains. Which can also help, and often times it does, with being able to know which are our sensory needs, for example, or how we work and our executive functioning profile and all of these things that help us live more comfortably. But if we don’t take a moment to integrate all of this information and look back and see ourselves with all of this information, this “you are Autistic” information... I’m not going to say that you’re not going to reach that place (if you don’t do that) but I think it’s going to be hard you don’t.

And yeah, I think I’m done!

Just to summarize, if someone would come up to me and tell me “I just found out I’m Autistic, now what?” I would tell them to take a moment to integrate this new information and just get to know yourself again. Which sounds super easy and it's incredibly hard. But yeah, I feel like through all of these things like through community connections and research and talking about it and processing all of this and trusting ourselves we can slowly go to the place where we are like “yeah, this feels like me.” Which is something that many of us, until our diagnosis, didn’t know. Whenever my psychologist asks me questions like “how were you when you were a teen?” I have no idea because I was so many different people at the same time because I masked so much. It’s only when you talk about it and rediscover yourself that you’re like “ah, yes, I remember liking this! Why did I stop liking this?” and then you realized because someone said “lalalala” you know what I mean.

So, yeah. I feel like our diagnosis just for the sake of our diagnosis it doesn’t do much because our diagnosis provides language and resources and tools that we, first of all, we didn’t know they existed, and second of all, that we didn’t know we needed so I think that, when we get our diagnosis, we really need to take advantage of these things our diagnosis offers which is information and connections and self-acceptance and self-compasion and so many things that come with it that are truly, truly life changing in so many ways. But it's not something that it happens overnight. It's not something that... we don't have a manual because we are so different and we all have different needs, but I wish someone would’ve said to me like “just slow down, you just found out this huge thing about yourself, you don’t have to figure it out right now, take it easy.”

I wish someone would have said that. I was lost, I didn’t know what I was supposed to do. It took me a couple of months to be like “yeah, I should probably start working on myself.” When I realized six months after my diagnosis, or eight months, I don’t know time is weird, I remember I was like “I’m kind of still living the same life that I was living before my diagnosis so I should really do something about that.” So, that’s when I was like “I need to do some tough changes and I need to figure out what I want before doing that” so yeah, I started doing that. But during all of those months, I was just telling people I was Autistic and just that. Not doing anything else for myself.

There's no manual for this. I can't tell you: “you should do this, and then this, and then this,” no one can tell you that. It's your own journey but... well, not but, and... And it’s going to take you whatever you need it to take, does that make sense? It depends on you and that’s about it. But I feel like the one thing it truly is up to us is being open to do that. To be like “I need to rediscover myself, I need to figure myself out, I need to know what I like, what I dislike, I need to regain trust myself again. I need to know how my brain functions, how I work best, what makes me feel comfortable, what doesn’t.” There's so many questions that arise because of our diagnosis and if we slowly start answering them, we can get to a very very cool and comfortable place of accepting ourselves and living our best Autistic lives.

I think I'm done. This wasn’t so bad, I think. At least, it didn’t feel bad! Hopefully you will like this.

Just a few like, notes, information, thingy... I don’t know how to call it, I’m still so very new at this. There’s a transcript of the podcast that you will find in the show notes information? I don’t know how are things called but you will see a link, that’s the transcript if you want to read it or you want to listen to the podcast while reading the transcript. Whatever. I'm realizing that I should have said this earlier, but okay. The podcast is also available on YouTube so you can listen and see the closed captioning. And that will happen for every episode, by the way.

I think I’m done. Hopefully I’ll come back next week, we’ll see how it goes. For now this is just episode one. And yeah. Please subscribe and follow and do all of those things that equal support which are very very appreciated. And again, thank you so much to my sponsor Tikimo for sponsoring this podcast. And thank you so much to Joe who created the amazing music of this podcast. It’s wonderful. I love it. Also check his work out. And yeah, I’m done! Thank you so much for listening and see you next time.

The Autistic Life Podcast is hosted by Agustina C. from @theautisticlife. Music: “Theme 27, Version 2” by Joe Kuta published by Jos. M. Kuta Music Publishing, BMI.