ADHD and autism: an Asian perspective. The Asian mental health podcast episode 19

A Shapes and Sounds community member shares her inspiring story of living and working with ADHD and autism.

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The transcript is available below.

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This podcast is supported by the Victorian Department of Health via the Diverse Communities Program. All information provided is general information only and should not be used in lieu of professional advice.

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Transcript

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Shapes and Sounds acknowledges the Traditional Owners of the lands on which we’re recording and connecting with you from, the Wurundjeri Woi-wurrung people of the Kulin Nation and we pay our respects to Elders past and present.

Marcus: Hello Oscar, hello Asami.

Asami and Oscar: Hi!

Marcus: So, I remember last year in class I had a lecture on ADHD and autism and it just kind of went through like the general concepts and everything, but it didn't quite have a cultural perspective to it. And I don't think I've seen a lot of research about it or like heard just any like personal anecdotes about it as well.

Asami: Like, would you say there are implications when it comes to culture and ADHD?

Marcus: Hmm, I would say so, yeah. Like, I think culture would definitely affect the diagnosis process, like the timeline when parents pick up on symptoms and stuff, the stigma surrounding ADHD and autism, and also just like the way different parents might expect their children to behave that probably would affect the diagnosis as well, I think.

Oscar: Okay, but before we begin though, what is ADHD and autism?

Marcus: Okay, so ADHD stands for attention deficit hyperactive disorder and ADHD is considered a neurodevelopmental disorder. So what this means is that essentially it affects the way our brains have developed from childhood. And because it affects the way your brain develops and all of that, it will affect your emotion, um, the way you think, etc. And there are also different types of ADHD. So we have like a type that's more focused on like hyperactivity and like impulsive behaviours and another type that's more about like sort of inattention and like not being able to focus. And autism is also neurodevelopmental disorder that can lead to difficulties in behaviour, communication, social interactions.

Asami: It makes me think, if we bring it back to the theme of this season, which is the silent hustle, work and mental health, I can really see how the symptoms that you've described and the presentations of ADHD, how that would really intersect with work and people's experiences of work. Right at the beginning, we kind of spoke a little bit about that lack of cultural perspective in conversations around ADHD. And that's what we're really interested in here at Shapes and Sounds. 

So what we actually did was we reached out to a Shapes & Sounds community member. Her name is Janet. And everyone, I should add, Janet wanted to remain anonymous. So that is a pseudonym, like a made up name. Janet actually reached out to us a long, long time ago when we did a call out for questions for the podcast and she wanted to talk about how culture impacts her experiences of being neurodivergent. And she's really talking about her journey of gaining a diagnosis, navigating her experiences and also navigating her career in the corporate sphere. and her experiences of having both ADHD and autism. I also wanted to say that Janet's from the corporate sector and like really high up. in the corporate sector. And remember how we were saying like, no one here at this table has any experience in the world. So let's like enjoy and like take a sneak peek behind what that world is like.

Marcus: And just as a quick disclaimer before we start the episode, we want to point out that this is just Janet's own story and her own experiences. Please know that there may be some parts that are not necessarily relevant to you, especially if you have a diagnosis of ADHD and autism as well. And if it's possible, it's really important that you access mental health support to gain the support that's directly tailored to your situation.

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Janet: I've always been closer to my dad than my mom. And he, we'd spent some time together on a holiday last year where I had had some sensory difficulties. We were in this cafe and ended up being sat right by the kitchen and the noise from all the clanging and the plates was really bothering me. So I ended up over lunch with him, just ended up taking out my earplugs that I always have with me and popping them in and I sort of explained why. And that I had sensory issues and that, you know, the background noise really bothered me. 

Oscar: I've heard of people talk about sensory issues before, and I think I know a little bit about them. But Marcus, can you give us a little more detail on it?

Marcus: Yeah, so what Janet is describing here is a very common symptom within people with autism. So that can be being really sensitive to loud noises, like temperature changes or heat, and also different textures like food, surfaces, et cetera. And what that sort of leads to is leading them to feel really overstimulated that it can sort of disrupt their thinking and like disrupt sort of like, yeah, like just like their everyday lives. And yeah, something just I thought to clarify at this point of the episode as well is that someone with autism might very likely have ADHD as well. And according to the research right now, it's roughly about 50% to 70% of people, if they have one, they'll have the other. So yeah, um…   

Asami: There’s a lot of overlap.

Marcus: Yeah.

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Janet: Um, so going back into the world after COVID where, you know, obviously we were all at home, I wasn't out in crowded public spaces, I wasn't on PT, there was just generally a lot less noise, literal noise in my life. Um, going back into the world as it slowly began to pick up again was really hard and I was, I couldn't understand why. because I had been fine my entire life beforehand, but my defences had been up, my body had protected me. And so all of a sudden it didn't have to anymore and then it tried to try and do it again.

Marcus: While listening to that last excerpt, it just kind of reminded me of this idea of masking within people who are neurodivergent. And she didn't exactly sort of describe what masking is, but essentially what masking is that tendency for people who have autism or ADHD to sort of actively try and conceal the differences that they have in order to sort of, I guess, for lack of a better word, like blend in with like their neurotypical peers. So, prior to Covid, she's had all of these defences, as she said, up to protect her and help her navigate the world in a way that is neurotypical. But then once she didn't have to do that anymore and then having to do it again, that actually is very taxing for her. And we know that masking as a process is very taxing, for people who are living with autism, and it contributes a lot of anxiety for them.

Asami: Yeah, wow, like that process of, as you say, like trying to pretend neuro-typical-ness. Exactly. That's the exhausting part.

Janet: Um, I often relate this back to an experience a friend of mine had where she had studied overseas for a couple of years, um, and had always grown up with cats in the house and then she went away and studied and she would come back to the house, uh, when she grew up and hang out with her cats. And she had really, really bad allergies. Um, and it turns out that she'd been allergic to cats her entire life, but her body had adapted and built up natural defences to that. And so when she went away, her body was like, great, no more cats. We can, we can stop making that particular effort and stop defending against that. Um, but then when she went back, she, you know, the allergies flared up again because her natural defences were gone. I think that's what happened to me after COVID. 

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So I started reading and engaging with a lot of media for autistic and ADHD folks, um, and I started seeing myself in it. I started reading some books.

Marcus: We just wanna point out here that there is actually a lot of misinformation that can be spread on the media about autism and ADHD. So just it’s important for anyone who is dealing with ADHD and autism to speak with a professional.

Oscar: Yeah, it's really important to figure out what's accurate and what's not.

Janet: Eventually went to my friend who is autistic. And I said, dude, I think I, I think I have autism. She was like, gently. No doy, of course you do. Like it was very obvious to her. And I've spoken to other people who they were like, yeah, it's yes. I obviously, obviously yes. Um, so a lot of people will leave it at that and not seek formal diagnosis for me, um, the decision to get diagnosis impulsivity happened quite quickly. Um... I think mainly because I was starting and going to be starting a new job. Um, I thought to myself, a diagnosis could be something that could protect me going into this new workplace. Um, and if I have, you know, this piece of paper that I can point to and say, no, actually I have a medical condition that means I can't do XYZ. Um, then it might make my sort of journey going forward a little easier. Um... And I think I just wanted the certainty.

Oscar: Yeah, one of my friends got diagnosed not so long ago as well for ADHD. And one of the really interesting parts that they mentioned was you get put onto a prescription. Those aren't supposed to be for life. They're supposed to temporary. But a lot of the time, you don't quite get a clear timeline about what that might look like. And so they had a little bit of anxiety about, you know, I might be taking this for school and studying, but once I enter the workplace, like, do I stop there or maybe it becomes more stressful? Do I have to continue?

Asami: Yeah, because I actually never thought about that. You hear a lot of people talk about, okay, and then I got medication for my ADHD. But then as you say, like, is that forever? Like literally forever. And then in Janet's case, she's kind of talking about how she sought out diagnosis in preparation for another job. So like, highlighting like a transitionary period. But what I wanted to know is like, what does that diagnosis process actually look like? I think a lot of people would be curious to know. So I asked Janet about that.

Janet: So first of all, I'm very lucky that I have the time and resources to navigate getting a diagnosis because it takes a lot of logistical organising and it's not cheap. It cost me I think almost close to two grand altogether and that that's all out of pocket. There's not a lot of Medicare coverage for that. So just wanna acknowledge that as an obstacle for a lot people first up. So my personal experience, I've seen a psychologist in the past, so. Um, not really knowing where to start. I reached out to her and I asked if there's anyone that she would recommend to go through the assessment process with me. She recommended a few providers and noted that I should look for providers who were neuroaffirming. So that's, um, people who are experienced in diagnosing women and girls. And the neuroaffirmation part is really, um. They're not going to come as a big sceptical about, about you and try and probe as to whether, you know. They take you very holistically and try and understand your whole experience. So I was really grateful for her recommendations there.

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Oscar: So she's spoken a bit about the diagnosis of ADHD, but what actually happens in those sessions? Like what's the process to get there?

Marcus: So it essentially involves like questionnaires, like sessions with the psychologist to understand like what's brought you in and like what the sort of difficulties you're experiencing are. And yeah, as she sort of touched on as well, like with the session with her dad, sometimes having like parent or even like teacher reports, like school like report cards and stuff can be helpful as well. Yeah, so just any information from childhood is good, especially because the symptoms come from, like they start from childhood. And yeah, there is a sort of very extensive diagnostic criteria for both autism and ADHD. And I won't sort of go into all of the details, but yeah, the psych will just assess how many symptoms you have. and whether they're causing those significant disruptions to different contexts of your life. So like school and work, work and social life, et cetera.

Janet: Uh, on reflection, there were many moments in my life where I didn't really quite get what was going on and I felt a bit sort of alien, uh, at the time I put that down to maybe this is just one of those things that I don't get because I grew up Asian and I'm hanging out in this white environment. Um, once I had my diagnosis, um, I realised on reflection that probably a lot of those were part of my neurodivergence instead, so a lot of reasons I put down to feeling different a lot of the time. I just ascribed to my having an immigrant background, a different cultural background. And when I think about that, if I had grown up white, like the majority of people in my country, you know, maybe I would have been diagnosed earlier, but I might have even felt more excluded and more weird because I wouldn't have had a clear reason to point to and say, oh, no, I feel different because of this. So in a funny way, I think it protected me a little bit.

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Asami: I really loved how Janet brought this up and how she's talking about how she didn't really understand why she felt different, but then like as a child, probably the easiest thing to kind of correlate that to was her cultural identity, you know? Like have either of you ever considered this, like being like, why do I feel different? And if so, what's that about?

Oscar: Yeah, there there is definitely a feeling of being like another or different, especially in settings where you are like the minority or a very significant minority. I think that I've always just put it down to, you know, being Asian, I guess.

Asami: Yeah, that's weird, huh? When you think about it, you're like, oh, yeah, maybe as a child, that is how I process things too.

Marcus: So is Janet saying like her being Asian is what protected her in a sense?

Asami: Essentially, like she's saying that if she didn't have being Asian as an identity, then she may have felt even more excluded.

Marcus: Right.   

Janet: Y’know, Asian parents, they put a really high value on academic achievement. And the way that my brain works, I did pretty well academically. So that also kind of protected me as well, I think. 

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I think earlier diagnosis might actually have really negatively impacted my life. I'm a millennial, I grew up in the 90s. Being a girl who was identified as really bright and high potential and put in advanced streams at school would have been much much nicer for my parents than having a girl who was… had a disability, effectively.

Oscar: I think it is such a beautiful way to view it as well as I think that also it highlights how stigmatised ADHD and autism are. And yeah, it's really interesting to see that culture can be a really beautiful protective mechanism for people as well.

Marcus: I think something that I really took away from that last excerpt we heard as well is, I guess sometimes the symptoms of ADHD or autism can be a strength for the individual as well. She talked about how the way her brain works led to her doing well academically. And we know that people with autism often report having hyperfixations and that can really help them excel in specific areas of their life as well. 

So I think the main takeaway from that is. finding the avenues in life that you can really excel in and finding the support that really can help you manage the symptoms and leverage on your strengths to excel in life

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Janet: I don't think it's stopped me from doing what I have wanted to do with my career. If I consider the sort of things that I've decided I wanted to do, most of them I have been able to achieve in my career and I now kind of realise that my brain really won't do things it doesn't want to do. The flip side of that is if I decide I want to do something, I will get it done sort of by hook or by crook. Like I'll pursue it for, um, with, with everything that I have. to the detriment of many other things sometimes. But I think as a result of that, I ended up sort of creating a career path that really suits me.

I work in sort of people related space or sort of HR adjacent. And my work is a good mix of doing sort of process related stuff. So a little bit of desk work where I can do stuff at home on my own and a bit of relationship work as well. Those relationship interactions are always, they're always quite structured. And so I have a set role, the other person has a set role and I get to interact with people socially, but the rules are very clear. And that makes my brain happy that there's a clear structure to the interaction. And so, I think, it's a good balance for, and there's a lot of problem solving involved as well. So yeah, I think it's a good match.

Marcus: I think what Janet reflects on here is like really seeing the way her brain works as a strength, not as like a point of difference to, I guess, what you see in neurotypical people. So she highlighted like structure really works well for her.

Asami: Like relationships, but they're kind of contained.

Marcus: Yeah, yeah, yeah. And like she likes problem solving as well. And if she really likes something, she will get it done. So yeah, I think, yeah that's a really good sort of way of seeing. 

Asami: It's positive. 

Marcus: Yeah, her sort of unique strengths. Yeah.

Asami: Have both of you thought about, oh, this is the kind of work I like. You know what I mean? Like she's talking about, I get to do a bit of like by myself stuff, but relationship stuff. 

Marcus: Yeah. 

Asami: You have?

Marcus: Yeah

Asami: For me, I like to look at Excel.

Marcus: I mean, I think I told you as well, I like the Shapes and Sounds work because it's very processed.

Asami: Yeah, yeah, so yeah, and it's like task, do-do-do, finish. Admin things, though. What about Oscar? Oscar’s like no not me.

Oscar: I don't really think about these things like, I don't know, I guess I should probably be considering them. 

Asami: Right? It's interesting to think about actually.

Janet: Autism and ADHD are disabilities for workplace purposes, and I'm very aware of people's potential biases. Um, there's very limited understanding outside of the neurodivergent community about how autism and ADHD can be really great things to have and really great things to have in the workplace. Um, my current workplace, my new workplace where I am now, it feels a lot safer than my previous one overall. I tried to sort of check that as much as I could before I signed my contract and joined. But I'm also very aware of just people's prejudices getting in the way if I'm really open about this right off the bat. I wanted to let people get to know me as I am as a person and demonstrate that, you know, I can do my job really well in this context without them having any prejudices colour their views of who I am. I had some really difficult experiences in my previous job, disclosing mental ill health, not ADHD and autism because I didn't know it at the time, but just disclosing burnout and episodes of mental ill-health it led to me almost getting fired. I had a really terrible boss. And so I'm really wary of disclosing. I'm quite fearful around it.

Asami: Sometimes I feel like in podcasts like these, we're always talking about mental health and being like, let people in, talk about your experiences and the challenges that you face. But like what Janet's highlighting is how that can really negatively play out sometimes, not always, but sometimes out in the real world. Like she spoke about experiencing mental health challenges and then she nearly got fired. And I think the thought that was going on for me was like, whatever it is that you're going through, remember it's like, you can choose how you find safety in different situations.

Marcus: Mm.

Asami: I don't know if I've explained that.

Marcus: Yeah, no, no. But definitely though, because I guess like the stigma surrounding ADHD and autism is still so... What's the word? Like prevalent, I guess? Yeah. I think there's this sort of idea that like ADHD or like people who like don't focus at work or like they procrastinate, like that's just like laziness and everything. But like some people that could be due to ADHD and like that a very sort of real condition that they have to struggle through. And there is a lot of research into this as well. It's very much well documented that people with ADHD, they have higher probabilities of unemployment. They have poorer vocational achievement. And yeah, I guess just highlighting that, I don't know if there's one thing to take away from this conversation is that the struggles they face are real difficulties that need to be managed and sort of like accepted by like everyone else in the workplace as well.

Asami: Yeah, like so much more awareness building that needs to happen, right?

Janet: So I also need to feel safe and I'm feeling fairly confident that I will do, but I want to get past the probation point and I want to make sure that I'm feeling safe, um, to disclose. And then even, even then that'll only probably be in the context of you might notice in the office that I do this sometimes, this is why I'm not going to be requesting anything really wild, um or you know, requesting an entirely different workload or anything like that. It's more just, you know, allowing my manager to have that knowledge so that when they see that I'm behaving a certain way or I look like I'm struggling with something that they can respond to that with, oh, actually it might not be that she doesn't understand the task. It might be that there are too many people in the caf and it's like breaking her brain from the noise. I want to get people to know me for me. And then when I'm ready, I will probably disclose but I don't want to do that right now. I need to feel safe and comfortable first.

Oscar: That does pose a question. How can workplaces be more accommodating for people who have neurodivergence? Is there work in this space or is it simply quite dead at the moment?

Marcus: I think that definitely is always more work to be done to promote more inclusivity, right? I don't know, I've heard of like places, workplaces that have spaces where it's like sort of to help people deal with like sensory overload. And like it's just like a space. 

Asami: Like a sensory room?

Marcus: Yeah, yeah, yeah. Things like that, I guess. Oh, yeah?

Oscar: Actually there's one at my uni. 

Asami: Is there?

Oscar: Yeah yeah, there's a sensory room.

Marcus: I think there is one at Melbourne uni too but I can't remember.

Asami: Yeah, but we don't know where it is. Like inclusive spaces, not just like ways of being, but also like physically like different spaces, right?

Marcus: Yeah, like actually how we're going to accommodate, yeah.

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Asami: I’m thinking about you now, you’ve done an amazing job with your career. But there was this person before that was struggling through all this time and didn't  know what was going on. And I’m wondering was there a process of grief  that you also went through as you faced your diagnosis?

Janet: There's a little bit of grief for me around, um, I'm never going to get better at life. Like I, there are some things I do really well in life. I'm learning to love my brain for what it can do. I see patterns. I absorb and synthesise information far more quickly than most people. Um, I have, you know, I've got a very powerful brain. Um, but I struggle with everyday things, you know, um and I need time to rest and recover from what most people would consider to be normal everyday activities. like. going to the supermarket or spending a day in the office. Like I have to make sure that if I go into the supermarket, that I don't do too much or I'm not too stressed out in the morning. If I go to the super market, I have to have my noise cancelling headphones on. Like I to accommodate myself in different ways, just to do what people consider normal things. And that means I have to rest a lot more. I have lower energy levels than most people. And so there's a little bit of grief in there that I'll never quite, life will never be as easy for me as it is for a lot of other people, in many ways. 

But at the same time, I'm also really proud of what I've managed to achieve in my life with effectively having had one hand behind my back the whole time and not really realising. So yeah, it's a complex emotional landscape and, you know, autistic people tend to process emotional things a lot more slowly than other people, so I might have a very different answer for you in six months' time, once I've got it under my belt a bit more.

Asami: So when I contacted Janet, um, I was like feeling super down and super shitty about life. So then I'm like prompting her like, what about the grief? Like, tell me, you know, and then she gave me this answer and I was like, this is so positive and so inspiring. Like I actually physically felt so much better after this conversation. Um, and I, I just love the way that she kind of talks about how sure there's grief. But you know, like sometimes there are shitty things in life, or sometimes things aren't what you think they should be, but really just understanding that it is what it is, and then just making the best out of every day and every situation and every experience. I was like...  

Marcus: That’s so positive.

Asami: Snap out of it, let's go live life again.

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Asami: What advice would you maybe share with those who are maybe struggling alone and/or scared of seeking a diagnosis

Janet: It's perfectly valid to be afraid of seeking a diagnosis. Some people never will and that's completely okay. It was the right step for me, but A, I was able to afford it and B, it just made sense to me. It is not going to make sense for everybody else. So that's totally okay if you don't feel like going for a formal diagnosis. 

In terms of advice, lean into the things that make you happy. Even if society tells you that they're weird or immature or that, you know, the things you're not supposed to do, obviously don't do anything harmful to anyone else or yourself, but, um, you know, particularly with autism, your body wants to do certain things. Like when I can't find something, I make like a weird crabby, crabby clicking motion with my hands. When I get excited, I, you know, physically kind of wave my hands around a bit. Something which I now realise my dad also does. Um, surround yourself with people who you can relax around. People who aren't going to judge you for having a really deep interest in something that people think is weird. Um, people who are really happy for you to info dump on them about whatever it is you're super excited about. Just lean into what makes you happy, I would say, because your brain is a weird and wonderful place and it's a huge part of who you are. And it's the world that tells us that the way we operate is wrong. It's not inherently incorrect at all.

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Marcus: That's so touching. 

Asami: It's so touching, right?

Marcus: It is. I don't know all the points she sort of talked about in that sort of reflection were, I don't know, just so touching, so beautiful. But I hope this episode kind of sheds light onto the sort of unique experiences that people with ADHD and autism might face and just for everyone to be more compassionate to people who are facing these difficulties. And if you are sort of living with these diagnoses or like you might... think that like listening to this episode, like all some things might resonate with you to sort of seek the support if you can, because as Janet has reflected, that can be very validating when you sort of understand that there is a reason behind why you feel different.

Oscar: I think it was just so inspiring to hear how Janet has shaped her life around working with her strengths as well as her weaknesses. And I think that that ability that she has to, I guess, really just fully embrace her identity, I think it's kind of really inspiring just to show that even for myself, like, oh, this is the place I am, and this is how I've gotten here. And every single part that got me here has been part of this beautiful journey in one way or another. Yeah. And I think that's just so inspiring. I just like, there's so much acceptance in that.

Asami: Yeah, acceptance, right? And like this idea that you could always focus on how things should be, like it should be easy to go to the supermarket. Or isn't it better to be like, okay, I accept that it's not great, and it's easy. So therefore, I'm going to take action and find ways to manage and support myself to be able to go to the supermarket and it doesn't matter if another person finds it easy, but how do I find it and how do I support myself to do things?

Marcus: Yeah, definitely.

Asami: People need to be compassionate to other people, but actually there's so much in Janet's story about being compassionate towards yourself. That sounds so cheesy.

Marcus: But no, it's so true. Just be kind to yourself.

Asami: Yeah.

Marcus: It's so true.

Asami: Why does it have to sound cheesy when it's like, it's real, what we’re saying is real? And how beautiful like grief, often in the West, there's such a negative connotation around grief, but actually like in so many Eastern philosophies, it's like everything is cyclical. Like grief is a part of joy and joy is a part of grief and it's just a part of life and we accept it and then we, yeah, I don't know. We keep going, right? Keep cycling again, really cheesy. Okay, okay. 

All right. I'm going to take myself out of this kind of weird wellness voice that I'm putting on. And I just want to say a huge thank you to you, Janet, for sharing this beautiful story and just giving us this really beautiful and intimate perspective into your experiences. I think other people hearing your story, it may inspire them to go and seek a diagnosis or go and see support. 

And also just want to plug that. Um, if you're listening to this and if you are identifying like, I would like some support around experiences similar to Janet's, then know that a lot of the practitioners on the shapes and sounds Asian practitioner list really focus in on neurodivergency and have a lot of expertise in this area. And of course, tie that in with a very culturally responsive perspective too. 

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So you can find all of that on our Instagram and LinkedIn and YouTube. Just look up just Shapes and Sounds. You can like and subscribe to us on your favourite podcast app. Please download this episode for offline listening and share this episode with your friends because word of mouth really helps us all to de-stigmatise mental health within Asian communities. So with that….

Marcus: Stay safe.
Oscar: Stay silly.
Asami: And see you soon. 

This is a production from Shapes and Sounds. It’s hosted by Asami Koike, Marcus Lai and Oscar Abe, and produced by Yeo Choong. We’re proudly supported by the Victorian Department of Health’s Diverse Communities Program. All thoughts and ideas you hear are independently ours and our guests’.

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