Connie Tu: Internalized ableism, PDA & learning to unmask

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“In many ways I miss my old mask because it worked for so many years. This new mask is taking a lot of work to build.”

Connie lives in Bradford in Northern England and has spent the last 10 years as a skilled body artist in the medium of natural henna and ethically-sourced jagua. She received a dual diagnosis of Autism and ADHD about a year ago. 

Connie was one of my Instagram followers who answered my call for “regular” guests because she definitely didn’t see herself as an ADHD success story. She is currently trying to run her creative business, while parenting two neurodivergent teens and maintaining her marriage. 

We talk about her journey to diagnosis and her experiences with untangling her internalized ableism. Connie also talks about her experiences with PDA (pathological demand avoidance), childhood masking, feeling different, and the pressure to be white passing. And we discuss the pressure to model healthy emotional regulation as parents of neurodivergent teens.

And, inspired by Sonny Jane Wise’s new book “We’re All Neurodiverse,” Connie makes the case for renaming ADHD to “capitalistically challenged” — and I’m definitely here for it!

Website: createdbyconnie.co.uk

Instagram: @createdbyconnie

Links & Resources:

Connie’s Caught Red-Handed Podcast episode

We're All Neurodiverse by Sonny Jane Wise

Enjoy!

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Connie Tu 0:00
People say, do what you want to do, do what you enjoy doing, do what you love to do. And I've never known what that is because that's where my PDA is most debilitating what I would love to do what I enjoy to do. My PDA is telling me it feels horrible to do it, so don't do it.

Katy Weber 0:22
Hello, and welcome to the women and ADHD podcast. I'm your host, Katy Weber. I was diagnosed with ADHD at the age of 45. And it completely turned my world upside down. I've been looking back at so much of my life, school jobs, my relationships, all of it with this new lens. And it has been nothing short of overwhelming. I quickly discovered I was not the only woman to have this experience. And now I interview other women who liked me discovered in adulthood, they have ADHD, and are finally feeling like they understand who they are and how to best lean into their strengths, both professionally and personally. Well, before we begin, I would love to share with you this review from a listener in Sweden, named M UAMEW. m mu, and then a whole bunch of numbers. Anyway, it's entitled, I'm not alone. Thank you for this amazing podcast. In all episodes, I feel seen and heard as if they are all talking about parts of my life. I recognize close to everything. And I finally feel like I'm not a weirdo. I belong somewhere. I'm not alone. This is such a healing feeling. And I'm so grateful for finding this podcast as I was recently diagnosed with ADHD at the age of 42. Well, thank you and yes, you are definitely not alone. However, if you're anything like me, and honestly, most of my guests, you probably actually are a weirdo. But of course I say let's embrace the weirdo label and wear it with pride. We can all be eccentric, different and strange together and I wouldn't have it any other way. Speaking of which, if you are a woman or an adult who is socialized as a girl, and you have ADHD, and you're looking for coaching, support and connection and friendship, while also developing a greater understanding of who you are and how to best work with your neurodivergent brain, make sure to register for my next round of small group coaching. I have a new session starting in a few weeks and I would love to have you join us let's be weirdos together, head to women and adhd.com/group coaching to find out more and to register and of course that link is in the show notes. Okay, here we are at episode 175 in which I interviewed Connie to Connie lives in Bradford in northern England and has spent the last 10 years as a skilled body artist in the medium of natural henna and ethically sourced jagua she received a dual diagnosis of autism and ADHD about a year ago. Connie was one of my Instagram followers who answered my call for regular guests a few months ago, because she definitely didn't see herself as an ADHD success story. She is in the thick of it so to speak, currently trying to run her creative business while parenting to neurodivergent teens and maintaining her marriage. We talk all about her journey to diagnosis and her experiences with untangling her internalized ableism and Connie also talks about her experiences with PDA pathological demand avoidance or what I prefer persistent drive for autonomy. We talked about her masking and feeling different in childhood and the pressure she felt to be white passing. And we discussed the pressure to model healthy emotional regulation as parents of neurodivergent teens. So without further ado, here is my interview with Connie. Enjoy. Well, Kati, thank you so much for reaching out. I am super excited. I feel like there's this world that I've been inducted into of Hana that I had no idea existed. So I'm excited to kind of pick your brain about that. Before we get started. Why don't you tell me a little bit about your diagnosis? You were dually diagnosed with ADHD and autism at the same time? Correct? Correct. Yeah. And that was almost a year ago.

Connie Tu 4:21
That's right. Yeah. Just under a year ago, I got the Zoom call on the 31st of January last year. So just under one year ago. Yeah, it was. I don't know whether it was a shock or a surprise or a relief or all of those things all at the same time. Yeah,

Katy Weber 4:39
right. All of the above. So what was happening in your own life that led you to pursue this diagnosis kind of put two and two together for yourself?

Connie Tu 4:49
Oh, yeah, well, the the put two and two together process spanned a long time. I have two children they are for 14 and 16, and my 16 year old was diagnosed back in when they were seven years old. And they were diagnosed with autism. And at the time, I remember just being like, well, this is obviously from not my side of the family. And I was pretty adamant that I, the roots were very clear in that they weren't from from me. And then my second child during the pandemic, the COVID, lockdown years, they went through a really tough, tough time. So when we came out of all the lock downs, I took my second child to see pediatric psychiatrist in the hopes that we could get an anxiety diagnosis so that the school could work with that. And then the psychiatrist pointed out that they Well, the psychiatrist recommended that we take our second child for an autism assessment, which threw my kid out, and threw me out. And then within seven days, I remember standing, I'd just come into the house, I'd Shut the front door. And we have some follow on yards here in the UK for invisible disabilities. And I have two of them for both kids and now hanging on the door. And over two and a half hours, I stood there thinking, Wait, so if both my kids are diagnosed on the spectrum, then statistically speaking, I am also likely to be on the spectrum. Does that mean that I'm possibly also autistic, and then I even have like the messages when I message my friends and my husband, like, am I autistic. And then that turned one page. And then I'd had a counselor therapist since, coincidentally, since the beginning of COVID. And I've been talking to her for nearly a year and a half by this point. And I said to her, I'm pretty sure I'm autistic. That's that. And she was saying, and you've never considered having an assessment, you know? And I was like, Well, no, not really, I think it's pretty clear that I'm autistic. So you know, that's that that's done. And she was very gently probing and saying, you know, if there's a way to get an assessment without too much inconvenience, it might be worth going down that journey to see where that takes you. And I was like, no, no, no, absolutely adamant that I wasn't. And then, during the therapy session, I just know what you mean, in case I'm ADHD as well. And she won't be something worth exploring, you know, you could eliminate it, couldn't you? And I was like, No, I don't think I am. Yeah, and then it all started it was, I think it was my second child was referred in July 2002. And they were assessed in September, October time, and diagnosed in December. We went through private medical insurance, we went through Booper here in the UK, because Bupa won't fund an autism or ADHD assessment, privately unless it's related to mental health issues, existing mental health issues, and I had 20 year record on my medical record of dealing with anxiety and depression. So I refer to my GP and said, Let's eliminate this as a cause for all the depression and anxiety that I've been working with for 20 years. So we they referred me out to a private Assessment Center. I was accepted just as my kid was being assessed. And so by December when my kid got their diagnosis, I started my assessment process and I don't think I've ever felt more audio HD than after the assessment process I was just so so Jane, you know, the all the self reporting not talking about all the history and then having all these little lightbulb moments like oh my god, they're asking me about this and they're asking me about that. And then the QB testing just was horrible was absolute hell just sitting there at a computer screen staring out this stupid little box. Stupid screen. I just wanted to throw out of the window and I remember getting home and needing three days to just regulate back to center and just re energize myself and be back to whatever normal it was that I thought I needed to be and and then got the official diagnosis, as I said on at the end of January last year, so it's not even been a year and ever since then, I've just been consuming all the social media doing all the reading following the rabbit holes and the hyper fixation here and there and just trying to teach myself about myself. I think just get that self awareness. But I think I reached out to you because on on your Instagram, there was a feedback saying that people hearing your podcasts always feel like it's a success story. And at the time, I was like, I definitely am not feeling anywhere near a success story, I'm still struggling with a lot of internalized, facing a lot of internalized ableism. And wondering how the hell this to navigate or unmask, but also merge what I know about myself with the new mask, you know, the new version of me now it's all very, it's all very much a work in progress at the moment, are researching to be medicated, and it's not covered privately. So if I went privately, I would be paying hundreds of pounds a month for that prescription, which we can't afford. So then I went back to our NHS routes, and asked the GP, if they could take my diagnosis, and then re refer me to an NHS psychiatrist to see if there was something they could do. And now the GP has said that there's no route to do that. There's so many people who are being late diagnosed ADHD, and it's such a large number of hours that they needed to triage as a GP practice to discuss what they could do, and they came up with no solutions they came up with, what they told me is they have to put me back into the NHS assessment route. So I have to be reassessed, again, in order to see an NHS psychiatrist in order to see if I qualify for medication. And they said, I've had a letter to say I'm on the waiting list, and I will be contacted in due course. So there's no time frame, no time period of expectation on there. But I've been told through word of mouth that it could be anywhere between two years to six years. Who knows. And there's a shortage of the medication here in the UK as well. So even if I got through, there's no guarantee that I would get any medication. So yeah, that's where I'm at, I'm feeling a little bit sort of, could it work? Would it work? Could it help? You know, a lot of what ifs and a lot of question marks where I'm at at the moment.

Katy Weber 12:12
Oh, my goodness, all of that is so relatable, and so frustrating. And if there was ever a way to confirm the diagnosis, it's the exhaustion and frustration that we feel having to navigate this whole process around medication and the medical system. And oh, my goodness. And when we were talking about the exhaustion from the QB test, I felt like that also, actually, I remember when I was talking to the, of course, I can't remember her name, but I had a guest to who works with the QB tech, and she was, you know, talking about how a lot of that test is to navigate how exhausted you are after, like how much mental load it takes to just hold yourself in one spot and look at a screen and all of the things that they're asking of you because I remember thinking like, Oh, I did really well on this test, maybe it's gonna show that I'm not ADHD but that I like crashed for the two days after having to take it. I completely feel all of the frustrations that you are experiencing with the NHS and having to get re diagnosed because you went the private route, right, which is again, which is that I didn't realize that was something that was common, the idea that like, if you bypass the NHS and pay out of pocket for the for private assessments, that they're no longer taking them, or was there something specific about the route you took?

Connie Tu 13:40
I didn't know that either. I think I was under the impression that you could it was a formal diagnosis with a private Assessment Center, while the private Assessment Center has to be NHS approved, almost, I think, in some way for them to be able to give you this diagnosis. So if the NHS has approved the Assessment Center, therefore the diagnosis should hold under the NHS. So it baffles me that my private formal diagnosis with a very extensive report is not acceptable for redirection into the NHS route, psychiatry route that it's very confusing it could speak to it's obviously another one of those invisible roadmaps that we don't have a nobody tells you about until you hit it and you need to navigate it. And you're looking to find other people who have, you know, the secret code to unlock the map. But there isn't one I think they it feels almost like they're making it up as they go along at the moment based on what you know, as the NHS staff themselves have access to they have dwindling resources themselves. And they're also struggling and a lot of them working, you know, on goodwill, not, not salaries and wages and you know, a well rested nervous system.

Katy Weber 15:00
Oh gosh. Yeah, yeah. And also the question around, what do I do I need this, how would my life change? If I was on the right medication, I think is a question a lot of us have. Because even even if you are medicated, there's a constant fudging with titration. There's so many different types out there. Like, I feel like when I first started, this podcast was first diagnosed, that was the question I used to ask all of my guests, which was like, some people say, it's been life changing. And I'm like, what does that mean? How has your life changed? You know, what is what am I lacking in my life that this medication would help with? And it's really hard. Those are really hard questions to answer for ourselves. Because I've tried medication, I've tried a bunch of different types. And sometimes it's helpful. Sometimes it isn't, like, there's so many factors at play. And, you know, I think if I could say the one greatest change in my own life since was the diagnosis itself, and that ability to start looking at things and reframing them. And, you know, it was interesting, I was listening to one of your podcasts that you had recorded on HANA in the head of world and that's where I was, like, exposed to like henna Khan and this stuff around your profession. And I think these these interviews must have been before your diagnosis, but it was so interesting to listen to you, you know, it's an interview about the art form and the profession. And you were talking about the award, you had won the Asian wedding Award and the imposter syndrome you felt and some of the like difficulty around the anxiety of the event like it was so it was so interesting to hear it through the lens of a diagnosis, because here it was, like, you were basically talking about your autism and ADHD in this other podcast, where I was like, Oh, the sides or, you know, the sides, were there all along?

Connie Tu 16:52
Yeah, it's just like, glaringly obvious. Now, now that I have the diagnosis, like you say, it's so it is life changing, having the diagnosis, I think, because if you're totally unaware, like I was, I knew, I mean, prior to this, I was an expert and diagnosing other people, I could see autism and ADHD and other people just super clearly I was, you know, literally, oh, that person and this person and this person, but, but not in myself. And then once the diagnosis happened, absolutely, every single area of my life made sense, you know, the the awards, why I don't like awards, why I don't like going up for awards, why I was so reluctant to, you know, be nominated for an award, I've realized that I have a really heavy PDA profile. That's just any sort of demand on my nervous system, any sort of demand on my system, just kicked me into gear, I go into freeze mode, I shut down, and I feel threatened. And that basically impacts everything a normal functioning adult should be able to cope with, especially a parent of two children as well. And with the medication I did so much, you know, because I can't access the medication. It just seems like this dream. So all you do is research it and research it and read it. And I'm searching on Reddit, I'm searching on, you know, social media and wondering which if I was the moment I get access to it, I will have some suggestions that I can bring to my psychologist about which ones to start with and how to start and you know what combination to try. And my key with all these researches, will medication help with the PDA because that is the thing that I find most disabling. That is the facets of my ADHD that makes me feel most disabled. And from all my research, I found nothing, there's no medication that will help with the PDA, it can help with the hundreds of thoughts. It can help with quietening the mind. It can help with tasks transitioning from what I've heard, tasking, initiation and things like that. But the one thing that really sort of makes me feel like the biggest failure in my life is the PDA because that's the one thing that I cannot manage. I've even joked if I could legitimize it out of my brain, that would be the one area that I would remove because the rest of it I love the rest of it. I'm, I'm quite happy with I'm quite proud of almost but the PDA is just, it seems like a small part, but it just seems to make every other part of me suffer. But I think that's also because there's all this ableism that I'm I'm yet to reckon with, like internalized ableism that I just cannot forgive myself for not being able to manage. And that's the toughest part, I think,

Katy Weber 19:43
is the expectations that we have on ourselves you think Yeah,

Connie Tu 19:48
yeah, definitely the expectation to the social expectations or societal expectations, you know, of a normal functioning successful human should be able to do these things. things that I'm struggling with. And you know, when you're running your own business, you've got constant demands on you. You've got your emails coming in and you have phone calls coming in from fresh inquiries fresh business that you should be pursuing. But you're like, Oh my God, my phone is ringing. I don't know who it is. A don't know if I have it in me to even answer the call. Okay, now they've hung up. Now I need to bring them back. Oh, my God, I don't even want to bring them back. And the same thing with an email you're like, if I email them back straightaway, then am I setting up an expectation level that I won't be able to sustain? And then if I wait two days, I might have waited too long. is two days too long? Is one day better? Is it you know, all this overthinking all the time? Just constant paddling, paddling, paddling, paddling, paddling. And then this PDA saying, Well, you've left it two days, they probably don't want to hear from you. Now. All you've left it five days, they don't want to hear from you now. Well, you've obviously failed there. You've obviously done that wrong. It's just this constant noise, constant noise all the time. And it's just, yeah, really exhausting. And that is why I'd love to be able to get medicated all optimized. But yeah, apparently nothing exists.

Katy Weber 21:17
It sounds like there's a real overlap between the PDA and the RSD that I hadn't really explored much before. So just to backtrack, if anyone's listening and they're like, What is PDA? PDA is officially pathological demand avoidance, oftentimes called persistent drive for autonomy. It's very common diagnosis which in with autism, and I it's one of those diagnoses that is like nails on a chalkboard for me, because there's nothing pathological in my mind about demand avoidance, especially when you are living your life on a different realm than a neurotypical. And so a lot of the time it comes with like being very oppositional. And so, you know, in my life, for instance, I absolutely am surprised looking back at my childhood, especially, I'm surprised I was never officially diagnosed with Oppositional Defiant Disorder, or PDA because I was that kid who you can't make me in, I was the most stubborn child, especially when I couldn't understand the authentic logic behind something. Right. So all of those ways in which it was like, Well, this is tradition, right, that, you know, if something didn't like, make sense to me, there was a lot of that. And so I'm curious, you know, and it is something I think a lot of us experience in to some degree on a spectrum as well. Where would you say you experience it? The most is it is that you're talking about it in terms of like your business? Or do you think you also experienced it with relationships,

Connie Tu 22:45
it's interesting that you brought up like, how you experienced that in your childhood because in my childhood, I masked i was the most conforming child and teenager and student ever and I was hit with that Oh, potential, you know, she's got massive potential, she could be anything in the world and, and that's actually where the PDA I think, is most debilitating. My hopes and dreams, my goals, they trigger my PDA and the yearning, the wanting to be to achieve those things, is quite crushing and makes me I feel where other people feel excited and thrilled right neurotypical people, I would not typical, apparently feel excited and inspired and really thrilled to be going on a on a journey to pursuing what they want to do. I feel like dread and fear, nausea, you know, really physical reactions. I just feel like it's the most unappealing thing I could do with my life. It's how it feels. And yet, it's a hope and a dream. And something that I aspire to. So I struggled when I was in school, you know, when it came to picking a discipline to specialize in to go to university with, I've always done what was objectively considered the best option. People say, do what you want to do, do what you enjoy doing, do what you love to do. And I've never known what that is because that's where my PDA is. Most debilitating. What I would love to do what I enjoy to do. My PDA is telling me it feels horrible to do it, so don't do it. So I was really lucky when a HANA came along because it wasn't on my radar. It came and it clicked. And it just the art of Hana just clicked and the community was so welcoming. And the guidance that was on offer from other established artists was so welcoming and so giving and so generous. So it hacked the PDA it just came in. Interrupted if you've never thought of this before, you haven't had a chance to dream about it. You haven't had a chance to envisage an end goal. So you can just jump in and see where it takes you, which is why I've been an artist for 10 years now. But everything else that I've ever wanted to do, I don't think I've ever even mentally pursued it for longer than 510 minutes, because my system instantly shuts it down. A live example I can give you is, I have literally just started doing a counseling course and introduction to counseling course, I've done two lessons of the first module of two modules on level two. And I've had an interest in probably like a lot of ADHD as I have an interest in self development, self awareness, psychology, all things to do with psychology and behavior. And I, I can trace it all the way back to when I was 1516 years old. But I've never entertained, studying it myself or entering it myself. I've been in long term relationships with someone and supported them during a degree in psychology with like avid interest and like, heated engaged conversations about what they were studying about while I did you know, a more generic management degree. And then I think earlier, late last year, my husband said, Have you never thought about doing counseling, it seems like something you would really mesh well with. And I was like, Oh, my God, he's mentioned it. He's actually, he suggested it, which means that people are starting to pick up on it, which means that maybe it's something I can't keep ignoring for the rest of my life. And I brought it up with my therapist, and my therapist was like, you know, just see where it takes you. And you know, everyone's saying just go with the softly softly approach. You don't have to commit you just, it's just an introduction course you just start it. But it's so easy for me, every so often, if I just start to think about it, my ADHD jumps, five years down the line. It's thinking about when this course finishes the next course, that finishes the funding that I'm going to need, what if I decide to do a masters? Where am I going to find the funding from if I do masters? No one can afford to do that? And what if I do it? And I waste? Absolutely. Everybody's time? I don't mean any of the deadlines. I don't attend any of the lessons. I can't even peel myself out of bed. And then what if I've managed to overcome all of that? Get all the qualifications? And I just decided, no, I can't do it. I've spent all this time and all this money on it. And I'm just not going to do it. I'm just going to sit on it. Like I have always done with everything else I've done in my life. What if that happens? Why should I even start? So I've had to dial it all right back, and just focus on making it through the next lesson. And like I said, I've had two lessons and both lessons. After each one. I feel really inspired by the learning. And then I crash into I'm really not suited to this. I don't there's not a part of me that is suited to this at all. It requires good listening skills. And I have hyper empathy, which is great. And I have you know, I can relate to people. But can I sit and listen, I'm not sure I can do that. I'm not sure I have that. In the end, I keep forgetting that. That's why you learn. That's why you'd start on an introduction course you start because you want to learn. And it's the journey of learning and getting there, nobody's there at the beginning. But I just cannot remember it because my ADHD just jumps every, every moment I talked about it. I jumped six years down the line already and talked myself out of it. So it affects, like you asked like many other areas, you know, relationships, and parenting and just everyday life and running a business. It affects all of those areas, quite intensively. But I think the biggest one that I don't think is top I don't think I hear being talked about enough is my hopes and dreams and goals for my life. What I want to achieve with my life. That's the biggest one but they build up into the big things, don't they? I guess so. Things like running a business like I've recently had access to a business coach and I didn't realize how difficult I find it to just do menial tasks like maintaining a website, creating a newsletter, updating my work social media. I have a personal social media that I'm very happy to update because I don't feel there's any you know, there's no demand for me to do it. It's not expected for me to update my personal social media but my work social media which my business will rely on in terms of getting my name mother, it just feels so much harder to do so. Having a coach as you know, has been a body double and someone who can hold me accountable to it. A little to do list in my head and my ADHD brain, I've decided it's too much to do this, to do this, it's too big, it's going to take too long, I have a million other more interesting things to do, that I would rather do. So I'll do those instead. And then having the business coach pulled me in mind. And then I realized the to do list actually only took about an hour of my day, very little. And I just made it in my head as something massive because my PDA was like, no, because someone's expecting you to do it, you're expecting yourself to do it, and you're disappointed in yourself for not doing it. And therefore it's harder to do, you cannot do this, go do something that makes you feel better rather than this, this is kind of make you feel horrible, is the big, big beast, I feel like there's I've gone into this big negative black hole. There is hope there because like I say, I've actually started the course. And I think I've started this course and exploring this itch that I've had for nearly 30 years of my life. Because this is probably the most supported I've ever been in my life and the most self awareness I've had in my life as a result of the diagnosis as a result of investing in having therapy. And as a result of being able to understand myself and explain myself better to my husband and my kids. It means that for the first time in my life, I probably am the most able I've ever been to explore something that I want and have wanted to do for a long time. But it's still really, really, I'm still finding it extremely difficult.

Katy Weber 31:44
Yeah, it's so relatable in terms of goals, right? Like I think, you know, something I talk about a lot and work with a lot with my coaching clients, because I think coaching and why coaching is so helpful when you have ADHD is the fact that you do you have that accountability, you have somebody who's gonna say like, let's do this, let's focus, let's get back on track. But a lot of the times when I work with other people, and I experienced this in my own life, goals can be really, really difficult to articulate. And it's not just because of our executive dysfunction around planning and organization and prioritization, although that's a huge part of it. But I think he really tapped into this anxiety element of this fear of failure, right, which is, I have let myself down so much over the course of my life in terms of goals and not achieving them, that it's a real trigger. Like it's a real traumatic trigger to have goals in the first place. And I remember like my parents always saying to me, when I was younger, when I would skip class and do things procrastinate in the last minute, throw in something and get like a D. And my mother would always say, like, you only put in the bare minimum, because then if you fail, you have an excuse for why you failed. And if you really, really worked hard and failed, then that would be crushing for you. So you avoided that. And I always felt like is that true? Is that what I'm actually doing? And I still don't know the answer to that. Because there is a part of me that feels like Well, no, a lot of that had to do with like, inability to really process what I needed to do and leaving it to the last minute needing urgency and all of that stuff. But there was that part of me that was like, Where does that anxiety come from in your description of the counseling course is so spot on in terms of like, How can I trick myself into doing something for fun, and not putting this huge amount, you know, not having so much at stake, and we put so much at stake. When we go after things, we have to be the best or it's a failure. And I hear that in myself all the time I see it in my kids, I see it in the you know, the women I talked to where it's like there's, it's all or nothing. And we talked about all or nothing with with ADHD. But I also feel like there's something there's like this core anxiety that you've tapped into around that. And it reminded me of the interview that I keep coming back to I'm gonna have to put it in the in the show notes. It was the caught red handed podcast, where you were talking about accolades and how like difficult it was to receive praise and how it you found it didn't motivate you it actually made me very uncomfortable. Because it was like it was these moments where it was like a standard was being set. And once a standard is set, you immediately kind of freeze around like am I going to keep that up? Am I going to what does this say about me? What does this mean about me and that it was much easier to like not focus on that. And I remember her asking like, well, what does motivate you? It was like this sort of very simple question. And you were like, I don't know like really feeling such a complicated I think we have such a complicated relationship with things that are otherwise simple to other people and I think we see that in like what is fun, what is relaxing? What is rejuvenate all of these things that we feel like everybody else has a list of surefire things and we look at them. And we're like those actually produce anxiety in me. And we're having to redefine these very basic emotions for ourselves. You're nodding, so I'm hoping that made sense. Like, I don't know if that's making sense.

Connie Tu 35:17
Nobody totally knows. I just saw a meme, literally this morning. And it was just a cutesy meme with some cute animals, and a couple of captions written. And there were a few options. And one of the options was, you've reached the point in your life where you are doing things for fun, because you know how to regulate your nervous system. And I just went, Oh, my God, I really don't know how to have fun. I don't know how to have fun. And my mother's been with the kids. He knows how to have fun. He knows how to be silly. He knows how to make fun of himself. He knows how to make light of a situation. He knows how to just laugh at things. And I'm always so sick. I mean, it's always like, why are you so serious? Why are you so serious. And it's all because I can't regulate my nervous system, which means any extreme state away from center and neutral is really frightening. I don't know, if I'm going to cope with it. I don't know how I'm going to manage it, if I don't cope with it. And all of it is such an unknown. I think that's what PDA comes down to. It's like you say it's not pathological. It's literally the inability to trust your nervous system, because you don't know what how reactive it's going to be to your everyday stimulus, everyday tasks that you need to do or that are expected of you, you just don't know. You cannot trust that your nervous system is going to be okay with it that day. There's nothing out there that can stabilize it for us. We just have to poke and prod trial and error to figure it out. And who wants to do that?

Katy Weber 37:04
Well, and I think it's, you know, that's what's so damning about internalized ableism is that it's internalized there is, you know, it really comes down to ourselves, and we're too exhausted to change the narrative, and that the narrative has been dumped on us over the course of our life. And yet, you're like, oh, my god, are you telling me I now have to deconstruct my own internalized ableism? Like,

Connie Tu 37:27
I can't even do that. Yeah. Curious, like,

Katy Weber 37:33
how much of this do you think is cultural? Because I, you know, when I was talking about myself, being a stubborn child, and how I said no, all the time, like, I feel like there might there is some white privilege in there as a white woman, that I can afford to be stubborn. And I wonder if you look back at the sort of agreeable nature, that mask that you had as a child, if you look back at that, and think that that, you know, is another narrative that's placed on an Asian woman? In terms of the expectations of you?

Connie Tu 38:04
Yeah, yes, I absolutely appreciate you bringing this up. Because I would have just talked and talked and then come back and forgot to bring up this part, which is just obviously a key part of who I am. All of it, yes. I recently read a book by Sanjay Jain wise, they do the lived experience educator, and they wrote a book that posits that we live in a society that is has pathologized neuro divergence, and the pathology, the history of the pathology, of how the pathology came around, is rooted in capitalism and white supremacy. And so when I was reading it, because it's written in a way that sort of really, baby steps you through the thought process, and I suddenly realized, Oh, my God, I have fully subscribed to the pathology paradigm, I absolutely see ADHD, and autism as a pathological disorder. And that's how I want to see it, because that helps me to label it and understand it and research it and go down the rabbit hole and understand it. If you take away the pathology paradigm, and you look at it from a neuro diverse paradigm, and it's the case of people deserve the ability to self determine their own needs, and self diagnose how they feel their experience of living is, and they can decide for themselves, the best way of functioning for them that keeps their nervous system and their themselves safe. And my mind was like, Why have I never considered the neuro diverse point of view? Why have I only ever considered the pathological the pathology viewpoint? And I realized, going back it's because I grew up in a small coastal town here in the UK, and I'm of Hong Kong Chinese heritage, and we knew all the Other Hong Kong, Chinese families within the town, we knew each other, we all spent Christmas festive holidays together. We all knew each other by name, we call each other's parents, Uncle and Auntie. And I didn't obviously didn't know I was neurodivergent at the time, but I could feel I was different. But I thought it was because I was physically on the outside, I was not white. Although I thought I was white up until I was about 10 years old, I was 10 years old before I realized, Wait, I'm not white. And I obviously just fully submerse myself and subscribe myself to the white community around me. And I'd assimilated. And that's part of my mask as a neurodivergent person, part of my mask is to be white passing. So I speak and sound like a white, middle class white person, it's allowed me the privilege to pass between a lot of spaces, a lot of white spaces and a lot of minority minoritized spaces as well. Because outwardly I don't, I don't appear white. But since the diagnosis, I realized my mask is fully subscribed to being a white passing person. And I conform. Actually, not because I'm white passing, I conform because I want to be white passing I needed to be white passing to survive. Growing up. Well, I experienced that I was already mentally different. I didn't register that I was mentally different. I just knew that I was different. And I needed to be a different version to fit in, throughout school, and throughout friendship groups, throughout social groups, so I conformed, because it somehow I knew it was essential to my survival. And my parents, much like a lot of their generation, as first first generation immigrants to the UK, they left the safety of their own country, with the invitation from the British government to a better life and a better economy here. And so when they came here, they all hit the ground running and set up their own businesses and they worked on words and words, and they never had the luxury of having any time to give us the emotional support that children need to be nurtured growing up. I so we knew as a generation of kids, you know, like the latchkey kids were very much latchkey kids, in our community as well, we knew that the key to family peace was to be a good kid at school, because if you're a good kid at school, you don't cause trouble for your parents. And they don't need to disrupt their hard working day, to go to the school, to negotiate in broken English, what is going on and tried to figure out a solution. So for me, I was the model child, the model student, because I hated I hated to see anything unsettle my family, at home, and then delicate work balance and family violence. So yeah, a lot of it was survival. And I didn't realize until now that I have my diagnosis. And now I'm able to look at it from this, I've had my eyes open to this neurodiverse paradigm that not everything is a pathology, not everything is a disorder. Not everything is an illness. And some of it is actually a very reasonable reaction to the environment around you and the conditions that you've been pushed through. Yeah, so it makes me realize how much of my white passing mask was a reaction to my environment, and to my upbringing, and to the importance of keeping the family safe and keeping the family stable within its little unit. Yeah, it's, it's blown like a mushroom cloud in my brain just thinking about it, because I've also gone gone down the thought of, if my parents didn't migrate, if we'd have stayed in colonized Hong Kong, how would we have developed would I have still, I wouldn't be as masked like this, I wouldn't have been a white passing person, I would have been vastly different. But then I think back to go back to not my parents generation, but my grandparents and my great grandparents and thinking they were living pre colonialist, Hong Kong and during the communist era, where China was going through the Communist revolution and wondering whether I probably would have thrived at village life. You know, the need to be to do everything to survive, you know, the you're gonna need to farm one day you're going to need to make one day you need to fix one day you need to repair one day. You need to feed people you need and then you live as a village and you live as a community. where your neighbors are your family, and you celebrate together as a village and just think, well, now I realize that my neurodivergent probably wouldn't have struggled so much in this small village, rooted into the ground lifestyle. But I'm not in that lifestyle, I'm in this capitalist lifestyle where I'm expected to do a nine to five, and utilize my degrees and utilize my education and my privilege and be a success. And that is what I don't, I am not suited to. But then I've also thought about how, no, before capitalism, we have feudalism, and then like, in even in China, we've got communism, and before that it was, they had an empire there too. And like, I'm not aware of any school of psychiatry, in Chinese culture, and that even things like autism is translated from English to Chinese. And in Cantonese, which is what my parents speak. When I talk about autism, it's channeled, directly translated as loneliness disorder, which is horrible, absolutely horrible and totally inaccurate. Because there's just very little acknowledgement in my cultural heritage of mental health and mental health struggles. I think there's an extremely high suicide rate, for example, in Hong Kong, because it's just, it's not addressed at all that people have, have mental health even. So my experience of my heritage and race. Plus this diagnosis has so many points, where I just think there's so many more questions now that I have to ask that are so much, like, way more complicated. I also had another train of thought where I thought, Was it only neurodivergent people who decided to take to migrate? Do you know what I mean? What the people who are neurotypical like I am safe here in my country, I don't need to leave even with the invitation of a better promise, a promise of a better future? Well, only neurodivergent, who came out? And that's, that's why my generation, we have so many common experiences.

Katy Weber 47:23
I think there's some validity to it. I've heard that especially with America, you know, why is there such a higher rate of ADHD in Western countries than in others? Is it because of the acknowledgement? Is it because of the services? Is it because of the definition of productivity? Or is it because a lot of these countries were founded by explorers, and you know, people with answered their parents who couldn't stay foot? And I think there's something to all of that?

Connie Tu 47:51
Yeah, well, Sonny's book was really interesting when talking about the history of the DSM, and how that is connected to the history of the DSM is connected to insurance companies, and how their relationship and therefore how the DSM grew. And I guess if you're a country that doesn't subscribe to the DSM, it doesn't apply. They don't yeah, it just doesn't exist.

Katy Weber 48:13
Well, and so much of the DSM is pathologizing. Basically, personalities that are struggling in capitalist societies, and a lack of support. And so they're saying, here you are, we don't you know, you don't get insurance, you don't get any sort of social supports. And now we're gonna label that your struggle as a disorder, which is a whole other episode. But I'm so fat, I love listening to your train of thought meander, it's so it's like it's old, like mandala. It was very lovely. One thing I wanted to come back to, which I think was really interesting is that we're talking about the masking and childhood and, and a lot of us have that trauma that you know, lowercase t trauma of perpetual self denial, right, which is, I have my own intuitive self, my own inner version of me, and I am projecting a different version of who I am, right. So it's like code switching, and a lot of the self denial that you experience on a cultural level. And then thinking about how that you know, the trauma of that over the course of you know, our whole life, destroys our nervous system, but also leading to a sense of PDA, a sense of like pushing, there's some basic, innate part of ourselves that pushes against that and is screaming to be let out right after a lifetime of suppressing and masking. And then thinking about, like, how so many of us if not all of us, one of the things we have in common is this fundamental pressure to figure out what's wrong with us, right, like looking back and always been like, why am I deficient? What is wrong with me? And I always keep coming back to that question because I do feel like it's what separates us from a neurotypical right like you talked to About like PTSD, you talked about two soldiers go to war, they witnessed the same event, one of them comes back with a lifetime of PTSD. The other one is like, it's fine, I go back to my life, you know, not just like, it's fine, but they're able to adapt, and others aren't. And so it's like, what is it fundamentally about those two people that is different. And, you know, coming back to this differences in our brains, I think that there is so much to be studied and looked into in terms of that lifetime of trauma and what it does to our brains and our nervous systems. And I think we're just starting to unpack, like, what is trauma for children, and I think you know, what you're experiencing in terms of the self denial and having to be good and not wanting, you know, being so hyper vigilant in terms of your parents. And, yeah, I mean, all of that contributes to a fucked up dysregulated nervous system. And,

Connie Tu 50:59
yeah, and this complete inability to trust my own instincts all the time. Because it's dysregulated, it means that I'm often the fiery parent, the one that is a little bit unhinged, you know, the one who feels things really, really quickly and really extremely and, and I have two smaller humans who also feature on the PDA profile. And if I'm going to fly off with my own emotions, they're going to feel so it's like, I have an extra responsibility to learn about my nervous system for their sake. You can't with a PDA child, educate them or impart knowledge to them in any traditional manner, it's got to be modeling, you've got to be able to do it yourself. And then, like you say, if you can see the authentic justification for why it works, you can witness it in working in your parents, then you're more likely to give it a try. But if your parent tries to tell you, you will not try it, you will not do it, you will reject it. Well,

Katy Weber 52:02
as a parent, one of the things I try to tell myself when it comes to regulation, emotional regulation, especially because I'm not so good at that, which is like, I could fly off the handle as many times as I need to, it's all about repair and regulation. So I think the modeling is not, I can never show them, my rage or my, my dysregulation, it's a what I modeling for them is how quickly I can or not even how quickly how effectively I can repair and come back to myself. That's what I tell myself, I don't know if it's true or not. But I feel like that's so much more important is like showing them the tools to self soothe, right, as opposed to just being like, we have to be perfect at all times. Because that's false. Eating

Connie Tu 52:47
a lot of humble pie I find, you know, always eating a lot of humble pie again, now you're right. That was an overreaction on my part, I could do better. I can't promise that I won't make the same mistake of mistake again. But I acknowledge that that was an error on my part. And I could, I'm sorry, you're just a lot of humble pie and learning, getting comfortable with the word sorry. And realizing that you will feel better. It feels horrible that you have to do it, but you will feel better once it's done. And, and yeah, they learned they've learned, they learned themselves as well. But it also it means as a parent, allowing them that channel of communication where they can call you out. When something's when you've done something wrong, you've not realized yourself, like you say, like to use emotionally, my emotions, my emotional regulation is also pretty poor. So for when they call me out, if I'm still dysregulated, it's very jarring. But then I have to, for the sake realize, okay, it's jarring, you're allowed to acknowledge that you're still not out of it yet. Give it time. And then when you call me come back and say, Yeah, you're right.

Katy Weber 54:00
Which I think really is teaching them advocating, you know, teaching them how to advocate for themselves under call out just by recognizing and I think that's what we're doing now with these diagnoses in adulthood is like we are really developing a language around who we are and how we act in certain situations. And that's where I think I feel like that ability to define and understand our essence is so much more important than medication. I don't know, maybe there's somebody out there who feels like medication is more important. You know, when we were talking earlier about executive functioning and medication and one of the things i i have read about that I find really fascinating is that if we take medication if you afford not noticing a lot of huge differences in our own lives, if we take it consistently, it starts to improve our sense of self and our sense of self confidence and our sense of self trust. So that when we talk about goals goals and never reaching them and never wanting to set them because we always disappoint ourselves. Like there's a sense of like, you know, re steering that ship, and fixing a lot of that core internalized ableism that we have been talking about, which is, we actually start improving our executive functioning in such as incremental ways that we start to trust ourselves around a lot of the things that we've developed fear and anxiety around. Anyway, I don't know, I have no answers. But I have a lot of questions that I love to ask you that with you. Yeah, I have one more question. If you have time, the you had mentioned at the very beginning of our conversation that you felt like you had kind of shifted to a new mask. And I wanted to I wanted to come back to that and and ask you what, how would you define the new mask?

Connie Tu 55:49
I think the new mask is that I'm still keeping my old mask close to hand. So when I go when I go, Yeah, whenever I go to someone, like I went to Sunday seminar last week, and I was extremely anxious. And it was mostly because I'm so used to attending seminars and just feeling completely overwhelmed by the sensory profile of the room, and then by the horrible, mundane conversations that I was going to have to have with people I've never met before. And, and so I think the feeling was I've got to carry my mask with me to this event, even though it's one neurodivergent people. And then when I'm in a neurodivergent, I mean, I'm pushing myself into increasingly neurodivergent spaces and finding better and better connections to other humans who have similar lived experiences to mine. So the old mask isn't, doesn't fit the situation anymore. So my new mask is sort of, it's very unformed, and it's very new, and I'm very unsure about it. So I very much feel like I oversharing have I Trauma dumping? Is this inappropriate sharing? How am I going to really regret this when I get home? That's what my new mask is very much about all the spaces that I go into, you know, and anybody who's you'll probably relate is starting this counseling course, there's a lot of self exploration and self discovery involved and so even into lessons I've gone, okay, I'm oversharing. Okay, I need to pull it back. Okay, not too far back. Now I'm just being cold. Am I being too cold is this, my new mask is just very much one step one step forward, one step back, still trying to figure out what the heck is going on. Because I have the self awareness. Now, I want to be more authentic to myself so that I can survive the day. But at the same time, I need to learn my actual boundaries, so that I don't overstep them, and cause myself a nervous system breakdown or ADHD burnout. Or there's, it's, it's a very complicated I, in many ways I missed. I miss my old mask, because it, it worked for so many years. And this new mask is is taking a lot of work to build.

Katy Weber 58:29
Oh, I feel that I definitely feel that. Yeah, there's many times where I miss the naivety of my old persona for sure. Yeah.

Connie Tu 58:41
Yeah, you know, the armchair psychologist who was so confident and certain and everything they knew I really missed that. That mask, although she was wrong, but yeah.

Katy Weber 58:55
Well, this is, gosh, I could listen to you all day. This was amazing. Thank you so much. And then I'm curious are your What are your thoughts about the listening to other women's stories? Because I feel like I get so much more out of talking about all the struggle and the fascinating, you know, rehashing and unpacking and all of that stuff. When I had made this call out to quote unquote, regular women, there was this part of me that was like, every woman I talked to is fascinating and talented and artistic and also really, really struggling and in a lot of pain and, and I think you articulated it so well, but I also feel like I hear you know, you're also incredibly talented and so brilliant and interesting. And for me, that's the fun part about the podcast, and you're like, even when I say that you're you're cringing to hear those words. So I'm like Are we just sort of stuck in this hamster wheel of of negativity bias and our own lives that we'll never get out of,

Connie Tu 1:00:03
Wow, I don't always feel stuck. I feel like there are moments of light where someone gets through. And I think maybe it's the autism in me. Sometimes when you place the logic in front of me, and I cannot argue with it, I am forced to acknowledge that there is some thing to celebrate things like, I've listened to several episodes of your podcast, and it always is galvanizing isn't it to hear someone go through the same and you're like, well, this person's really accomplished and really clever and really so intelligent, and I feel exactly the same as them. So it's great to hear from it. But then, because of that negativity bias that we have, we're like, I am nothing like that person. You know, I'm nothing like this success story that's on a podcast they've got on a podcast with how successful they are. So then, I'm like, a volunteer myself. And now I'm on the podcast. And now I've sort of knocked out my own negativity bias by thinking, you know, I'm not a success, I am struggling, I haven't done that well. But hey, you, you you've wangled your way until you've managed to somehow find your way on a podcast talking about your diagnosis and your ADHD. So there's obviously something there that you not acknowledging, and it will be something that I obviously will need to slowly process and come around to well, okay, maybe I am doing all right, maybe something is going well, something is, is doing okay, for me these opportunities, they, some people say, I used to say to my husband that he was a very lucky person, but luck isn't ever, without efforts. There's some pedaling that needs to happen for the lock to occur. Admittedly, some, it feels like there's many people out there who aren't lucky numbers, no matter how much pedaling they do they look or bypass them. Due to lack of privilege, and all other circumstances. But you know, when someone is lucky, there is some modicum of effort and skill that has got has managed to make that happen. So yeah, this is one of those circumstances where I'm gonna have to go well, I will justify it by saying, well, she was making a call to real women. And so I reached out, so I'm a real woman. And therefore, that's how I go on. And totally disregard the fact that I have done some podcasts before I have put some work into it. I've made notes to prepare what I want to talk about, I've made a temporary little sound booth. So I don't echo I've, you know, practice all my angles and lighting first, you know, all these things are things to be celebrated things that I've managed and done on my of my own volition without without much guidance. And so why can't I acknowledge them? Why am I still sitting here again? But you kind of got lucky really, didn't you?

Katy Weber 1:03:04
Well, I think it also comes back to the what motivates us, right, or what, you know, what we find success in. And I think that there's a lot of those things if they feel effortless to us. But they don't, doesn't feel like success, right? If things like we have this, we feel like a success is always out of reach, because success for us is is figuring out the things that don't come easy for us. And so I think a lot of the time, it's that idea of, you know, Inner peace is what is successful for us. And I don't think any of us has that. So maybe it's why we continue with the negativity bias because things that feel like they look like success on the outside to other people really, we don't value fundamentally at the end of the day. And so we feel like we're still left behind, or we feel like we still aren't there yet, wherever there is, but we see it in everybody else because what they've accomplished is something we haven't been able to do. I don't know. It's anyway, it's something I think a lot about, obviously, and love talking about. So thank you for entertaining and thank you for reaching out. This has been really great.

Connie Tu 1:04:18
Oh, thank you for inviting me on I feel very honored to be to be even considered so yeah, to even be here is is a bit mind blowing. And I'm not quite, I don't think I've fully accepted and acknowledged is happening.

Katy Weber 1:04:34
Wow. No, I did you prepare a alternate name for ADHD?

Connie Tu 1:04:39
I did. Yes. Based on the book that I would like I said Sunday's book. I would reframe ADHD as capitalistic Lee challenged. That's exactly how it feels. I feel like I am not suited to this system at all. I

Katy Weber 1:04:57
think that might be my favorite one yet does that Is that exactly from studies book? I'll put a link to Sonny's book.

Connie Tu 1:05:03
Well, yeah, it's not exactly from it's more, there is a box that suggests, you know, alternative terms that reduce, you know, to switch from the pathology to the neurodiverse paradigm. And it just seemed to make sense, challenged rather than saying disorder was one of them. And I'm like, I'm definitely capitalistic ly challenged. I'm not.

Katy Weber 1:05:25
Oh my god, I think I'm gonna have to start using that word because I'm always like this this ADHD or am I just an angry feminist living in? I've just because I have I just, I'm capitalistic ly challenged for sure.

Connie Tu 1:05:42
Yeah, it makes so much sense as well. When you reframe it like that. Suddenly, all of it makes sense. So as a term ADHD is so insufficient, we're not attention deficit and ADHD doesn't even begin to cover the experience of it. But capitalistic challenge does cover quite a lot.

Katy Weber 1:05:59
It really does. Yeah. Oh, I love it. Well, this has been so wonderful. Thank you so much for spending this time with me, Kati,

Connie Tu 1:06:09
thank you for having me. It's been truly an honor.

Katy Weber 1:06:17
There you have it. Thank you for listening. And I really hope you enjoyed this episode of the women and ADHD podcast. If you'd like to find out more about me and my coaching programs, head over to women and adhd.com. If you're a woman who was diagnosed with ADHD and you'd like to apply to be a guest on this podcast, visit women and adhd.com/podcast guest and you can find that link in the episode show notes. Also, you know, we ADHD ears crave feedback. And I would really appreciate hearing from you the listener, please take a moment to leave me a review on Apple podcasts or audible. And if that feels like too much, and I totally get it. Please just take a few seconds right now to give me a five star rating. Or share this episode on your own social media to help reach more women who maybe have yet to discover and lean into this gift of nerd of urgency. And they may be struggling and they don't even know why. I'll see you next week when I interview another amazing woman who discovered she's not lazy or crazy or broken. But she has ADHD and she's now on the path to understanding her neuro divergent mind and finally using this gift to her advantage. Take her till that