Neurodivergent Notes: Meet Amanda

This episode of Neurodivergent Notes is a candid, wide-ranging interview with Amanda Arany (she/her), who is Autistic and ADHD. Katya (she/they, autistic & ADHD) and Amanda discuss:

• The "gifted child trap" when it comes to delayed or missed diagnoses of Autism

• Social media and online communities as accessibility and support resources

• Experiences with substance use as a coping strategy for masking and dissociation

• Amanda’s personal experiences with alcohol use and recovery, and how her Autistic traits made traditional alcohol treatment programs less effective

Below is the transcript of the interview if (like me) reading is easier or faster for you. If audio-only is your preference, you can also subscribe to our podcast on Spotify!

Katya: Hi, everyone, I'm Katya Siddall and I'm the CEO and founder of Hopper Health, and today we are talking with Amanda Arany, who is an arts educator in the Midwest. Would you like to tell us a little bit about yourself, Amanda?

Amanda: Yes, hi! I'm Amanda. I use she/her pronouns. I am an arts administrator, but my background is in theater and production. I’m queer, I’m biracial, I’m a Gemini, and I am Autistic with ADHD.

Katya: All right, yes, good club to be in!

Amanda: Yeah! It's my favorite club.

Katya: Totally. It's funny too, because when we met we were talking on a panel together about invisible disabilities and differences in the workplace. I remember getting off of that meeting and being like “Okay, if I still lived in Kansas City, we would totally hang out.”

Amanda: Right!

Katya: There's something about us being able to very quickly find our people. But you were diagnosed later in life, so you haven't always known that you are Autistic and ADHD, right?

Amanda: Right. There were a lot of reasons why I should have known, or maybe my parents should have known, but I did not find out until recently in my late twenties. I was a gifted kid and I went down the whole “gifted kid” route, so I think that made it really easy to have that label, and that seemed like a really good thing. I was also hyperlexic, so I started reading a lot earlier than most kids. I was fifteen months old, which is really crazy when you say it out loud, like knowing now in my late twenties that I'm autistic, I’m like how is that not the first indicator? [laughs]

Katya: Yeah. How did they not know? I ask the same question of my family.

Amanda: Yes! And you know I got nothing but love, but that is one of the biggest things where I'm like “Okay, okay, that was a big [miss].”  So that, combined with being a gifted kid, I skipped a grade, there were a lot of ways that just by those factors alone I felt “weird”.

I felt very different, but I was very lucky to have some friends as a kid that were like, “Hey, I think you’re being mean and you don't mean to be”, or “Hey, not everyone can read those things, but that's okay– you can still read them, but you have to understand not everyone else can”, and things like that. I had friends along the way who noticed these differences in me and helped me be able to relate to other people. So very quickly, I didn’t feel “other” or weird, so it just kind of all slipped through the cracks.

Katya: I'm curious too, because there's a lot of discussion where awareness is being raised around, especially women, nonbinary folks, queer folks who were overlooked, because as children, maybe they had more social skills [or did not have] intellectual disabilities. I mean, I was also a gifted kid that had friends and still felt like an outsider all the time and didn't know why.

I think the understanding of autism [is new], especially in women and this generation of folks who didn't have access to supports and understanding when we were children. Do you think anything would have been different for you had you known sooner?

Amanda: You know, there's a part of me that says yes. There's a part of me that says, “Wow, you know, it didn't have to be this hard.” I could have gone through my college years without thinking I was so deeply depressed - turns out it was just autistic burnout.

I want to believe that if I knew earlier, those things would have been different, but given how much research had not been done and how different, the research was- not just research but understanding of autism- I actually, I feel a bit of gratitude, and it's a privileged position to be in to say that, but I feel a little bit of gratitude that I found out later in life because this research now exists. It's not being given an answer that actually has more holes.

There are a lot of ways where I feel like I could have saved myself a lot of heartache. But honestly, I feel like I'm better now being able to go into my adult life with that rather than as a child having a label put on me and with a limited research that decided my path. You know what I mean?

Katya: Yeah, I do, and I also think the topic of privilege is a really important one to discuss, because I think there is a lot of fear, and rightfully so, in the autistic community as more people are joining the ranks of being diagnosed [as Autistic]. There's a lot of fear that folks who were diagnosed as children, maybe have intellectual disabilities, maybe are non-speaking- we don't want to let those folks get left behind and have all of the resources and focus be on “Hey, we're loud, we're [new] here, we're trying to learn and figure ourselves out.”

So how do you learn about your own autism? What was that process like for you? What were some of the sources that you went to to try to understand more?

Amanda: So it started with my best friend, actually. You know, we kind of talk about in the Autistic community: find your people. Even if you or the people around you don't know that you’re neurodivergent, in any way, you somehow find each other, right?

My best friend actually started this journey about two years before me, and was diagnosed Autistic, and supporting her and learning through her not only gave me a lot of resources that were at her disposal, both from clinicians as well as the internet TikTok community that is so strong- she was able to help me dive into those. But also just knowing my best friend for fifteen plus years, and knowing how we interacted and what was normal and natural to us versus how we had to operate in other circles.

And in the rest of the society, that was really my first wake up to not even “This is autism”, but “Oh, this is different and that's okay.” But just knowing that it was different, I don't think I ever had words for that.

I digress. I believe that TikTok and the internet, Reddit…it seems really casual to say social media! But truly, the amount of community, face-to-face stories you get- suddenly you realize you're not alone. That was the biggest wake up for me. Then you go digging just to find out that the fact-based research is done on young White boys. And so the community becomes your main resource.

Katya: Yeah. It’s interesting, Tiktok, Reddit, Twitter, Instagram have been huge resources for me as I've been trying to find a sense of community. I also feel like there's an obligation that as more of us start to come to terms with our identities, we have an obligation to be advocates in spaces where folks who are also Autistic might not be in those similar spaces because of our own privilege.

I worked in health insurance- I have a lot of friends and connections that are corporate folks or work in the finance world, and I feel like helping them understand more about the total spectrum of the Autistic experience is a job that I can do. But then I don’t want to be in our community spaces, shouting down people who have been living with this knowledge their entire lives and have found ways to coexist, whether they are speaking or nonspeaking.

I think about that a lot, but community is really important. I think it saved me. I don't know about you, but I feel very strongly about the community that I found online.

Amanda: Absolutely- a hundred percent. You know no one is a monolith for lived experience or an identity, but there is so much power in knowing that you're not alone and that feeling of empowerment just from your community is enough to really get you to– I'm saying you, I'm talking about myself, but you know [laughs]

Katya: All of us! [laughs]

Amanda: Exactly! [laughs] It gives motivation to just live as authentically as possible, because there is suddenly no reason not to. You now see your community is full of other folks who you're cheering on. You're saying, “Yes, I'm so proud of you. I'm so happy for you”, and then you're like “Why? Why wouldn't I want that for myself?” So it was really empowering and yes, I would a hundred percent agree- it saved me too.

Katya: Yeah, it's pretty amazing. And then I think about, “Oh, my gosh. What if TikTok went away?” Where would we go? What would we do? So there's an accessibility issue there.

I think that a lot of folks who are not disabled, are not Autistic, are not in these groups that are often more under the radar–I don't think people fully understand how important digital communities are to our sense of connection and belonging.

Amanda: My gosh, yes, a hundred percent. Even when I was in school, you know, middle school, high school, back on Myspace days…

Katya: Tom was your first friend.

Amanda: Yes! [laughs] But you know Myspace, Tumblr, whatever it was–those communities of my friends, who you know again, we found each other then without knowing (as adults) why we all felt so close. Those communities are what sustained us when we were in dark places. Even still today, when dark times come up, that’s how we can hold each other. So yeah, I am just very grateful for the online community and being held in those ways.

Katya: Likewise.

I'm also curious, we’ve talked a little bit about the friend experience, but [now let’s get] the family perspective. You were diagnosed later in life and both of your parents were children of immigrants. So they were first generation [culturally]– your mom is Puerto Rican, your dad is Hungarian.

Do you feel like being part of a multicultural family created any additional pressure to assimilate? Do you think that that impacted your experience at all growing up?

Amanda: Yes and no, and I'll explain why. Anyone who is a first generation American will be the first to tell you that there is immense pressure to succeed, and success can look different, depending on your family and what their priorities are. But the pressure to succeed, and even if not succeed, to build the legacy and not totally mess it up. Those are very, very important.

And so when I think about how that relates to me, therefore being a second generation American. You know, I think there was a lot of excitement when I was a kid that I was gifted in various ways…

Katya: Potential? [laughs]

Amanda: Exactly! Exactly. There was a lot of, “Oh, wow, okay, we started building this legacy and she can now finish it.” Whatever legacy means- I don’t even know!

There was so much pride, and I’ll pause to say my parents have always been unbelievably supportive and loving. Since I can remember, they have been so proud. A lot of what I think was overlooked in my Autism was coming from a place of true pride and that feeling as first generation Americans of “Okay, our daughter will make our family’s legacy proud. This human can change our legacy and continue sustaining whether it's in business, or this or that.”

So all of my potential was funneled, and took out anything negative that might have been seen from that. It was a “Well, everything else can be dealt with because you're so smart or because you can do this and that.” So I think the assimilation really comes in, you know, just, “Make us proud. Be the one to carry the legacy.”

And I think that my traits were really camouflaged then, because there was no space for it, and I as a child had the the emotional intelligence to see that when I did these things, whether it was reading a small chapter book at two years old, or you know, whatever it might have been, I was making my parents proud, and that was something that I felt like I lived for. I was like, “Oh my God, I'm doing it right. I'm doing everything right.”

And so as a child, you get stuck in that cycle of doing that. I think that my parents didn't see it, and I felt the pressure to live up to their expectations because they were so proud, and that had me camouflaging on my own because anything I felt was holding me back. I was like, “Well, they can't see that. I don't even want to see that. No, I have to be the best.” This hyper competence

Katya: That’s immense pressure as a child– of course Puerto Rican folks are Americans, but there's some very different cultural signifiers, familial behaviors, and how children are treated versus adults. To me, the immigrant experience is also the cultural differences that may then influence the pressure on you as a child.

I didn't experience any of that, because I grew up in a family [that was] WASP-y as heck. Everybody went to college. Everybody was an engineer and insanely good at math on my mom's side [and fit common stereotypes about autism].

My family was more, “If you don't do all those things, you're an idiot, you're a failure. How could you not go to college and graduate and then get a job and have a pension and buy a house and do all of these things.” So for me it was sort of the reverse. I was always told how lazy I was. So I didn't have that level of support, but it's a very different kind of pressure.

Amanda: Yeah, and they both are very difficult no matter what, because then as an adult–

Katya: Trauma!

[both laugh]

Some casual trauma.

Amanda: It’s fine- everything’s fine! [laughs] As an adult I can really empathize with my parents and I can also see where they were just doing their best and what they knew, and also that there were their own struggles that they were working through and hoping that I didn't have to deal with.

I think about my mom's side, there are now in the 2020’s probably eight of us that have been diagnosed Autistic. That's probably an exaggeration. My mom is going to listen to this and call me and say that's wrong. 

Katya: Why are you telling lies about our family on the internet? [laughs]

Amanda: Anyway, sorry Mom. There are a handful of us, right? It’s been interesting how those who were diagnosed back in the 90’s, early 2000’s– not that anyone's treated differently in my family, but who [a diagnosis] was accepted for and who just needed to keep doing their best to do better and live up to the family expectations. I think about my mom, and how if there were conversations happening in the household– in the Puerto Rican household– you can’t really talk about mental health like that and what anxiety was outside of just anxiety.

I think about if my mom had been given the opportunity to have those conversations, and how she and I have them now, and she's discovering in her sixties what that might mean for her. If she had been given those opportunities [to understand Autism], how could that have changed me regardless of a diagnosis? I have a lot of empathy for both my parents, but I know that I am just a tiny little fragment of the same story that many first and second generation people go through.

Katya: Yeah. In talking about pressure, I think one thing that happens a lot with undiagnosed neurodivergent folks, whether it's Autism or ADHD, or Tourette’s, there’s definitely a lot of discussion in the community about substance use as a coping strategy. Maybe not necessarily one that we are consciously like, “This is my coping strategy for these specific behaviors or these feelings, or I just need to muffle the voices so I can go to bed.” But it is very common and I think folks are kind of starting to realize that that is a coping strategy that a lot of people have been using to get by, as unhealthy as it can be.

Have you used these coping strategies? What was the outcome for you when you were trying to figure out how to manage your life, your emotions, your experiences?

Amanda: I mentioned earlier the cycle of hyper-competence and then burnout, and especially as a post grad going into working in theater, which is a very high stress, long hours environment. Going through that as I went through my adult life, the stress levels were getting really high and I started using alcohol a lot more.

It started out just hanging out with friends– it’s late after rehearsal, let's go get a drink– and you do that three or four times, and it seems small and insignificant. Fast forward to last year where I decided I needed to get sober because the alcohol had become exactly what you said: what I needed to quiet the brain. It became the only way that I could get myself to socialize. It was the only way I could get myself to feel confident in myself and feel like I had anything happening, because I was so shut down, so burnt out, and the nature of the theater industry was one that “the show must go on”, right?

So there was no time or space to take a break. Even in your summers you get maybe a month where less is happening. You don't get breaks. You don't get vacations. That's a whole other conversation- not the point [laughs] but I was coping with that just to get through to the next day and be able to be at that high level of energy and what I now know is masking by drinking.

It got really bad, and when I say really bad, the media will show you alcoholism in a very specific form and it's you know, it's very stereotypical and that wasn't it for me, but it was a daily anchor that was slowly breaking not only my soul, but my relationships with other humans, including my partner, and it got to a point where I knew that I was a shell of a human. Even though it was a “coping strategy,” eventually you're no longer coping with anything. You're just managing existence.

It's straight survival. And so it got to that point and I, actually, it was seven months yesterday of sobriety for me.

Katya: Congratulations!

Amanda: Thank you! I am very grateful that I did that not just for my health, but because that allowed me to truly acknowledge myself and the masks–the multiple masks—I was wearing and figure out exactly what I was suppressing. For a while, I thought I “knew” it was loud brain. That's all I could say, but then I learned it was sensory, it was social expectations, it was the burn out from the job and the hours. It was all these things and alcohol was my biggest coping strategy.

The outcome was not great, but I worked through it and now I just want to let people know how common this is for [Autistic] folks, especially when they don't know they’re Autistic and other intersections of neurodiversity. It's so common, and we don't know we're doing it until it can be too late.

Katya: Right. I think I've tried to explain it to folks like “Hey, remember at the beginning of the pandemic, when everyone felt like we had no control over our day-to-day lives?”

Everything was turned on its head. Everybody was just in survival mode. A lot of people, me included– I have never had much alcohol in my house, and I remember ordering a lot of it on DoorDash and thinking, maybe this isn't the greatest idea.

Looking back, it’s sort of like everyone got a taste of what life can feel like for us all the time. If you don't know why you are the way that you are, or why you do the things that you do, every day can feel very out of control and very uncertain. And I think we don't talk about that enough.

Amanda: No, we don't, and that makes me think about the logic part of my brain–my logic and systems. I might know. I might know up and down in a hundred different ways that this is bad, that something is wrong, when it comes to over consumption of alcohol.

The same part of me might also know something is going on with this whole brain and the way that I feel and the way I exist in the world. But nothing has given me reason to think that it's not just in my head, so I can logic both of those things and still somehow go, “All right, well if I drink, it's going to all be quiet, and then I don't have to listen to the logic or the feelings- that sounds like win!” I love the analogy that you made of everyone got a taste of it. Love is maybe a poor word to use, but…

Katya: You can love it. That's fine. It's a good word. I feel like we feel strongly. It's okay.

Amanda: Exactly. 

Katya: For me, it's really refreshing to hear you talk about your experiences with alcohol. Frankly, I applaud you for this because I would not have been in a place to operate this way in my twenties by any means. It really sounds like you have found a way to address the root cause without putting as much blame on yourself.

I think so much of the conversation around alcohol and drug use is more about, you know, demonization, stigmatization, disorders, abusers. We use these words that are so unfortunately very harmful, so to me it's very refreshing to hear you just talk about this like it was a thing that wasn’t working for me for a variety of reasons, so I've worked very hard to find other ways to make things work for me. I feel like more people need to hear those kinds of perspectives.

Not because it's easy to stop certain things. Once you have established a pattern, it's hard to break patterns, but I think just that general mindset is really refreshing for me personally to hear.

Amanda: Thank you so much. I appreciate that and it's taken a lot of work to get to that point. There were a lot of months leading up to the sobriety, and then, also since becoming sober, there were so many months of shame, guilt and shame, and analyzing conversations and actions and tearing myself down and it's like once you get to that point of rock bottom where you are your biggest enemy and you are the most disappointed with yourself that there's nowhere else to go but up and rebuild.

You have a choice there, where you can either go up and give yourself all the tools to succeed, and if you're lucky enough, to have support and be held as you do that, or you can stay at rock bottom and continue to bury yourself. It kind of went back and forth there for a minute, but I've been very, very supported. I'm very lucky, and my partner was a huge part of that who was like, “You know who you are. Who you are at the root never changed.”

But that was the thing that kept me drinking for so long was, “Well, no one knows–everyone knows that I'm still fun, I've got my stuff together, I’m the person that you can count on. No one even knows it's that bad, so clearly I'm good. I’m faking it, so it’s fine.”

To be able to remove myself from that mindset and go the complete other way… thank you, and it took a lot of work, but I think that it's the only way that I could truly heal and do the work to be not just okay with myself, but proud of the work that I've done, and in hopes that other people won't find themselves in the same position, or if they do, they'll be able to move through it quicker. Because why did I go through this if I'm not going to talk about that experience and do it from a place of “You can do it, too.” There's no shame.

Anyway, thank you, thank you. Thank you.

Katya: For me, it was so amazing sitting down to [prepare to] talk about some of these topics and you were very clear: “I really want to talk about this. I want to talk about my situation. I want to talk about how rough it was,” because I feel like most of the time that's not something that folks are like, “Hey, I would love to put this out in the world for everyone to know”, because there still is so much bias in perception and lack of understanding.

I think what's really cool is by you sharing these parts of your Autistic experience, there might be somebody else listening that's like, “Wow, maybe I can see how that applies to me a little bit.”

For folks who maybe are thinking, “Hey, maybe I have some coping strategies that I'm using that are not the best for me long term, and I'm coming to some of these realizations…” Did you have any tools, or things you tried, or therapy? Was there anything that you felt helped more than something else, or was it more your mindset and taking one day at a time?

Amanda: A little column A, a little column B. [laughs] Some actual tangible tools I had to address working through alcoholism, and it being a coping strategy, I journaled a lot.

Let me just say- I don't love journaling. I'm not one of those people that's like this is the best thing, and I'll do this every day. I see the value, and also, I don't like it, but I did it, because I was at that point of nothing working. This isn't working. What is it going to hurt?

And you know what, I can start journaling, and if halfway through I'm like this is the stupidest thing I've ever done, I have the control to stop that. And when I tell you that mindset, there's the mindset part of like I have the control, I am the only person in control of my life and my decisions, so if I'm going to make a decision, I want to be a hundred percent okay with it. 

That mindset helped me, one, journal, and two, it helped me in the moments of feeling out of control where my mind is doing eighty things, or I feel obligated to go to this social event where now I'm going to drink, and that's going to be how I get through this. That mindset of “I have the control, and I don't care what job, industry, friendship, whatever it is- if it takes away my ability to have control over my regulation, it is not worth it.”

I'd say that tool of reminding myself day in and day out. Affirmations are helpful, but it's another one of those where I feel like it's not for me. It doesn’t sit right, the same way journaling kind of feels performative. But getting into that mindset really required a kind of repetition during the day of, “I am in control.” 

Every decision I make is my decision because I chose it, and if I'm choosing it, the logic brain says, then there is a reason. It almost became tricking myself out of doing things like, well, if you're in control and you know this is bad, can you give me one good reason why you're doing it? And when you're Autistic you gotta trick yourself sometimes. [laughs]

Katya: I'm sitting here and kind of laughing and trying not to, because it's a serious topic, but oh my gosh. I mean the Pathological Demand Avoidance, or term I prefer, the Pervasive Drive for Autonomy profile of many Autistic people, myself included, is exactly that need to be in control–that deep, visceral feeling in your stomach of, “Oh gosh, I'm not in the driver seat. I'm not making the decision, bad, wrong.”

I'm now reflecting as you're talking, that I actually think I've used that in situations as well to pressure myself to do things that I know are better for me, especially around things like alcohol, where you know if I feel at all out of control, that's it's over. I'm done because I have to be in control. Not some external factor.

Part of me wonders: is that even something that substance use treatment programs are even thinking about, or in some ways taking advantage of, because it's a really powerful drive. I mean, you get somebody who feels out of control as an Autistic person, and if they have the means to change the situation, they are going to do it come hell or high water.

Amanda: That's a great point and I feel like that's such a gap, and part of why I'm so excited about the work you're doing. There's such a gap in the way that I have to get myself to a conclusion or have to be brought to a conclusion versus how a neurotypical person does. Of course, I was so resistant to the idea of like AA and/or the Twelve Steps. Things like that–I'm just like that.

You're not going to tell me I need to do these things. It's not going to work. I couldn't agree more. And I think that is a huge gap that people aren't even thinking about, or if they know it, it's being taken advantage of, which doesn't come as a surprise, unfortunately.

Katya: Yeah, exactly.

One thing we have touched on a little bit, but I would love to get your [additional] thoughts: do you think had you known that you were Autistic growing up, do you think you would have gotten to the point where you were using substances to reinforce a mask? How do you think that might have played out differently, if at all? 

Amanda: In a lot of ways I don't think knowing I was autistic would have changed much, but this is one of the ways I think would have been very different is that if I knew, I don't believe I would have used alcohol so heavily. 

I think the knowledge of what the alcohol was actually doing chemically to me to make me seek out that experience and also what it was doing to my sensory experiences, that was making the world easier to take in. If I had the knowledge that Autism affected me in those ways, and alcohol would then affect the Autism in those ways, I, using that logic brain part of my brain again, I don't think I would have ever gotten there. I would have been like, “Wait, this is inherently a bad combination.” It makes me think of how when I was in high school, I was hanging out with the “bad kids” drinking, smoking cigarettes, and whatever else.

Then I started doing theater, and anyone who knows theater kids, especially in high school, will tell you that is where every misfit can come together and have a place. I always say that doing theater saved me from going down a dark path, which is fair to an extent, but what it really did was give me an opportunity to unmask when I didn't know that's what was happening and I stopped.

I stopped drinking and doing all the “bad kid” stuff, except for using cannabis, and I'd say that was probably the best thing I could have been doing!

Being with the theater kids with all the misfits gave me the space to just be myself and I didn't even think about wanting to suppress or drink or anything like that, because I just got to exist, and so looking at that now as an adult, all I can think is if I just had a little more information…I was already so close to understanding it without knowing it. If I had a little more information about what the actual substances and coping strategies were doing, I think I could have avoided a lot of pain and a lot of numbness. 

My relationship would have definitely been different, but so it goes. All I can do now is just inform others and let them know, especially those who maybe don't have any reliances on substances or any coping strategies, but want to recognize it in others. I want to say that it's not always obvious, especially if your friends or family are neurodivergent. You may as well never know.

The best thing that we can all do is just try to find what's at the root there, try to find what it is that is building up to the point of needing to be quieted and go from there.

Katya: Agree, and it's been so refreshing to see more adoption of harm reduction as a philosophy relative to any kind of drugs or alcohol, because, at the end of the day, for people like us and people different from us, but who are using substances as a coping strategy, it's all self medication.

We're not having the conversations about, “What are you trying to help yourself do with the assistance of these substances?” I mean, I grew up in the 80’s, so it was like if you have a sip of alcohol, you will become an alcoholic and you will die, one hundred percent. If you ever do drugs ever, you will immediately become a drug addict, and you will die. And here are all these videos we're going to make you watch, and car crash scenes and scary, horrible, traumatic stuff.

Then I look at my daughter who's sixteen and her generation, or even kids on TikTok, that are making borgs [at college parties] like, “Well, you know, I want to stay hydrated, I want to be more safe.” I look at these kids like, “You guys are so freaking awesome!” How thoughtful and clever and supportive of each other. I mean, of course not perfect, but it gives me a lot of hope.

Amanda: So much hope, so so much hope. Yes, I couldn't agree more.

Katya: Well on that note, it has been so great to chat with you and I appreciate your candor and your honesty and all the things you have been willing to share. I think it will be really helpful for folks to understand more about some of our experiences that they may have no exposure to. So thank you very much. I really appreciate it.

Amanda: Yes, thank you so much. God, thank you. I'm so happy to have done this. Thank you, thank you.