AuDHD, sensory meltdowns, and hormones (Sam Hiew’s story)

After Samantha Hiew had her second child at age 40, hormonal changes shed light on her ADHD symptoms. She was diagnosed with ADHD and, later, autism. Sam talks about her experience with AuDHD, including regulating emotions and sensory meltdowns. Sam also talks about her multicultural experience and the importance of community when you have ADHD. 

Sam is a social entrepreneur, scientist, and advocate. She’s also the founder and director of ADHD Girls, an award-winning social impact organization that helps neurodivergent girls succeed.

Want to share your “aha” moment? We love hearing from our listeners. Email us at ADHDAha@understood.org.

Related resources

• What is AuDHD?

• A guide to hormones and ADHD

• adhdgirls.co.uk

• Sam’s personal website, samanthahiew.com

Timestamps

(01:21) What is ADHD Girls?

(02:59) Why was Sam questioning if she had ADHD?

(06:42) Sam’s multicultural experience with ADHD

(10:12) Sam’s ADHD symptoms

(12:04) Having both ADHD and autism

(14:32) Sensory meltdowns

(18:12) Sam’s childhood

(19:58) ADHD and hormones

(26:00) Where you can find Sam

Episode transcript

Sam: A lot of my challenges became more apparent to me when I became a mom. And I think it was the combination of my age, you know, having children, I turned 40, the hormones being what they were, and how that then impacted my ADHD symptoms.

Laura: This is "ADHD Aha!," a podcast where people share the moment when it finally clicked that they have ADHD. My name is Laura Key. I head up our editorial team here at Understood.org, and as someone who's had my own ADHD "aha" moment, I'll be your host.

Sam, it is so good to be here with you today. Samantha Hiew, award-winning social entrepreneur, keynote speaker, scientist, community builder, and storyteller. And maybe most importantly at this moment for my mental health, in London, which means I get to do this in the morning, my time, which I never get to do. Sam, I usually have to do these interviews in the afternoon when my meds are wearing down, so I appreciate your geolocation.

Sam: We're kind of swapped here, aren't we? So, this is the afternoon for me. So, you're going to get a bit of unfiltered conversation from me.

(01:21) What is ADHD Girls?

Laura: OK. I look forward to that. Great. Sam, tell us about "ADHD Girls."

Sam: Yeah. Thank you so much for asking. It just feels like a lifetime ago now that I started "ADHD Girls" as an Instagram account when I was looking for answers for my own ADHD assessment. So, it all really began before I even got diagnosed and really was trying to figure out what the women experience is with ADHD because at the time it felt like there was more conversation around this topic, but still it was so underrepresented in terms of who was talking.

And for someone like me who came from Asia and moved to the UK, it felt as though every single story that I was listening to were people native to this country, were born here. And obviously, as a cross-cultural woman who spent half of my life in Asia and half of my life in the UK, it felt as though there was no one I could go to to really compare my experience.

And so, yeah, when I got diagnosed with ADHD at the age of 40, I then started to go really serious with "ADHD Girls," and I founded a social impact company with a dual mission to empower neurodivergent women and girls to thrive in society and to improve neurodiversity understanding through an intersectional lens because of where I came from.

And from then on, "ADHD Girls" kind of grew from a platform with a community of women with ADHD to now I have spoken at over 80 corporate companies, FTSE companies, really training them on what neurodiversity looks like through intersectional lens.

(02:59) Why was Sam questioning if she had ADHD?

Laura: Tell me more about what was going on during that time when you were starting "ADHD Girls" questioning what was going on with you. Talk to me about your challenges and everything.

Sam: Like I realized what I did was actually quite common in terms of what other neurodivergent women were doing when they were looking for answers. So, for me, at the time, I became a new mum and I was a second-time mum after a long break. So, other five years between two of my children. And so, I think I was in the perfect storm of having given birth, turning 40. And then the pandemic hit, you know, was a transition between becoming a mother again and then going back to my career.

And so, there were a lot of changes that were going on biologically in my body, you know, so my lifestyle was completely turned around because I had to stay up in the night to breastfeed my new son. And so, there were a lot of changes. So, I had some what I thought I wouldn't get again, post-natal anxiety. You know, when he had trouble feeding.

And as a woman, so much just focus on you, whether you could breastfeed this new human that landed on earth, who relies on you for everything and you feel a bit like a failure when you can't provide him or her with the thing that he needs the most. And so, that gave me so much anxiety around whether I could do it or not. And then, yeah, that was just part of the story really. I think the other part was actually realizing that having another child wasn't just plus one. It felt like it was just something that was totally unmanageable for me.

Laura: Totally. It feels like like you now have 3 or 4 children when you do that.

Sam: Yes, exactly. Do you mind if I pick my squishy up? Because I just dropped it.

Laura: Oh, absolutely. Pick up your squishy.

Sam: Here it is.

Laura: Great. So, you're in this moment, this pressure cooker moment, what was it that made you start to think, "Is this ADHD?" Because it's got to be hard to pick that out of all of that.

Sam: I guess I was on Instagram quite a lot at the time because I started my own self-furnishing business before that, and so I became a bit of an instamom.

Laura: Wow.

Sam: And so, that's what they call it, right? I mean the instamom. And then I came across someone I was following and she talked about her ADHD experience and she was also somebody who ran a successful business. I look up to her and I just couldn't have ever imagined that someone successful could have ADHD. I know as cliché as it sounds now, so the more I read, the more it felt like "This sounds like me."

So, then I was really curious. Then I did more and more research and I got in touch with a psychologist who said, "Why don't you come and meet in live?" And I was like, "But I don't have a diagnosis." But I did it anyway. And like a thousand people turn up to listen to what I have to say on ADHD and women. So, it was a very well-received session.

But then I just thought, "We are onto something here." And that then kickstarted my social media campaign where I interviewed women with ADHD around the world. And what was interesting also is that I covered an intersectional experience and that help people from all over the world get in touch. And I think everything just snowballed from there.

You know, I hosted the Neurodivergent Women and Girls panel for Neurodiversity Celebration Week. And I was having messages from people from where I came from in Asia who said, "Wow, it's so nice to see somebody who looks like me leading that session." That felt so meaningful because it was not just a business anymore. It was an identity. You know? It was a purpose.

(06:42) Sam's multicultural experience with ADHD

Laura: I would love to hear you talk about your multicultural experience and how that intersects with ADHD.

Sam: So, I come from a Southeast Asian background, and people from my culture were primed to look for educational attainment and career success as the pinnacle of our achievement. And because I came from a country that was a third-world country when I grew up and there was a lot of pressure from everywhere, especially in the Chinese culture, to become a doctor, an engineer, an architect, a lawyer.

And so, there is definitely this cultural connotation that makes it hard for us ADHDers to be discovered because on the surface we look like we're crushing it. We've done really well, we've got those straight A's, and we've got the big cars or the house, but really it's the mental health challenges underneath all that. So, then we've got cultural individuals, especially from the Asian background, it can be really hard for them to figure out what neurodivergence look like for them.

It's so interesting because maybe it's the setup that they have within their community, that interreliance because there's a lot of that inside the Asian culture where people rely on each other, you know, and some families have three generations that still live in the same house. You know, that level of support is in some ways too close for comfort. But in other ways it's an ADHD dream. There's always someone to body double with you and someone to pick up the slack if you are struggling to do something.

And so, for me, if I was in Malaysia still, I think there would be much more support in terms of family being there. You know, my mum would surely drop off food. Which is amazing because when you're looking after children, the last thing you need to think about is cooking for them. And that could be sorted in an interreliant culture, whereas...

Laura: Wow.

Sam: I live here and I am self-reliant. And I think that's part of the reason why my ADHD traits have worsened when I moved across the world.

Laura: What you were saying about community, it so, it really resonated with me. My family had a family move in with us during the pandemic for a variety of reasons. We needed each other. That was one of the best times of my entire life.

Sam: That's amazing.

Laura: I've mentioned that on the show, I absolutely don't want to diminish what other people went through during the pandemic because I know that it was horrific for so many people. Yeah, but I had never thought about it that way until what you just said about community and like you can body double all the time. It was powerful.

Sam: Yes, it is. Because then, is it Dr. William Dodson that says the definition of a perfect ADHD relationship is if you have the starter and the finisher and you think about it, you know?

Laura: Yes, yes. I'm thinking of the people who lived with me. I'm like, there was this starter, there was this finisher. There was the one who took the kids when I would start to lose my temper and...

Sam: Exactly.

Laura: The one who would make me laugh and the one who would take out the garbage and...

Sam: Yeah. It's still a dream that I keep looking forward to with us.

Laura: You can come move in with me.

Sam: Yes, please. I'll do it in a heartbeat.

(10:12) Sam's ADHD symptoms

Laura: Tell me about the ADHD symptoms that you were experiencing that really were adding to what was going on with you.

Sam: A lot of my challenges and became more apparent to me when I became a mom. And I think it was the combination of my age, having children when I turned 40, the hormones being what they were, and how that then impacted my ADHD symptoms. So, a lot of that symptom was persistent anxiety.

So, I became a bit boring where I would obsess about what my kids should eat. And that was totally different to what I used to be before, where I was like carefree. And that level of obsession was not really me or not the me I knew. So, was that need for control and trying to remember what I was doing in a room when I went in there because I always had really good memory.

Maybe not immediate memory but I can remember things like when I need to get to an appointment, you know, what I was supposed to do. Which is contradictory, right? And now I think that's a combination of being AuDHD, autistic and ADHD, so it is interesting because I was obviously just pursuing that ADHD diagnosis and I wondered why it did not fully encapsulate my experience. And after I got diagnosed, then people were saying that I could potentially be autistic, too.

And if you look back, then it all kind of makes sense because I love science. You know, I always need to know the process of how things happen. I want to be told like what's going to happen ahead of time before I go through it. I do have persistent anxiety and I am very literal, I have been told I was really blunt, you know, and sometimes unable to really understand social rules.

(12:04) Having both ADHD and autism

Laura: It's so common for ADHD and autism to co-exist. Tell us a little bit about what that means for you having both ADHD and autism.

Laura: So, for now, like this current present?

Laura: Yes, talk, tell me about now.

Sam: Yeah, because I kind of go back and forth, you know, in terms of what it means to me, because when you get diagnosed and you identify with more than one neurodivergent label and you kind of relook your life and think like, how is it kind of change, you know, throughout time? For me, being AuDHD is like you're a mystery wrapped in an enigma to yourself. And it's like, you know that you want one thing one day and then the next day you wake up and you kind of want something else.

Having that need for novelty and change. But I also really love that routine and need to know what's ahead. So, it is a contradiction and I think it's really helped me understand myself, but also help me understand why I would sometimes appear quite confusing to people, quite inconsistent.

Laura: Give me an example. That's interesting.

Sam: Yeah. So, maybe I would appear to be one way to someone, like I'll have that need for control where I am and need to just know what's going on. And then the next day I'll think, you know, let's book a holiday like eight months ahead and to a totally random place. And so, I would look like this person who just is two person, two different person in one. In fact, my ex used to call me Jekyll and Hyde.

Laura: How do you feel about that tension? Like, I'm using the word tension, maybe it's a joy. I don't know if having those kind of two sides.

Sam: I think it really depends, because if I'm able to figure out the best parts of me when I have these two different sides, you know, then obviously I'm going to be nice to myself. But a lot of the work has been trying to understand why I struggle to say, regulate my emotions during times when other people could easily do.

Like, for example, the older I get, the more sensory challenges I have. So, what I do struggle with is the meltdown that is caused by sensory challenges that no one really can understand, even me. I have tried to be aware of what my triggers are, and that is something that still gets me. But I'm working on the acceptance of myself.

(14:32) Sensory meltdowns

Laura: Tell me what a meltdown, what might cause a meltdown, and what that meltdown looks like. Are you comfortable talking about that?

Sam: Yeah. So, I think it's more say, you know, if I haven't had a good sleep and my kids might be quite noisy, without that sleep quality, then I'm already quite touchy. And so, things are louder. They are felt more. And if I know that I start the day off this way, then I need to think about strategies that I can call upon. And my kids are young, right? So, I can't expect them to understand either.

And so, I have to take myself away from that trigger and try and recuperate what they call shutdown, where you want to just be in a safe space. And for me, that is in bed with my headphones in. And if I don't have that to go to or the sensory inputs are too much and it got to the point of no return, then I might lose my emotional regulation in the moment and end up raising my voice because it's not even voluntary anymore what happens when you get a meltdown. It's essentially an amygdala hijack.

Laura: Yeah. Can you define amygdala for the listeners?

Sam: Yeah. The amygdala is in your emotional brain. Is the little kind of almond shape structure in your brain that helps you perceive emotions. And so, it is often a structure that they say is enlarged in an autistic individual's brain. And for an ADHDer too, you know, we've been known to go from 0 to 100 because of that emotional flooding and sometimes being unable to tap into the rational brain to work out what's going on.

But when you have sensory challenges, right? The sensory input is directly linked to the emotional gate. So, the emotions in the sensory section in your brain is connected. So, when you are going through sensory overwhelm, that might then look like emotional outbursts, when if you can see and recognize the triggers, then it helps you also avoid them in the future. And also, you know, accept yourself, so that's that's the hardest part for me I think, you know, just living with AuDHD.

Laura: That does sound really hard. And I find an interesting sound, like you were talking before about the Jekyll and Hyde, right? How the ADHD and the autism can seem in contrast with each other or in opposition with each other. But what you just described with the meltdown, that seems like a piece of AuDHD. And correct me if I'm wrong, where they kind of build on each other and build on each other, ADHD and autism. The emotional regulation, the sensory issues.

Sam: Yeah, it does look like that, but it's still a mystery to me because we are so used to defining autism and ADHD separately. But what if it coincides in one person? It's not as though there are two different sides. You know, you have a very distinct, newer physiological structure and distinct biochemical compositions.

This is an area that still needs a lot of research. Understanding what you're made of is really the first step. Then you can think, "How can I mitigate this? You know, and I accept myself for who I am." And also being kinder to yourself as well, because really sometimes that's all you have. If people cannot see this, then it can lead to a lot of misunderstanding.

(18:12) Sam's childhood

Laura: Sam, tell me what you were like as a child in relationship to what we've been talking about with AuDHD.

Sam: It's really interesting because I was asked this question before as a child. I was very talkative, apparently. I was very active. I was always full of beans and I would run.

Laura: Did you say full of beans?

Sam: Yes, it's an English term for...

Laura: I love it.

Sam: Like you've always got loads of energy, always up to something.

Laura: That's cute. I like that.

Sam: I was very active. Wasn't really into studies very much. Most of my time was spent in the athletic field. I was more of a short-distance sprinter, which helped get me through school, actually. And then when I got to secondary school, I went to school without a field, so that really didn't help.

Laura: Oh bummer.

Sam: Yeah. So, that was also the start of a lot of the challenging ADHD traits, the kind of daydreaming space cadet. But before that, there was also the impulsivity.

Laura: Did you get into trouble?

Sam: Loads of it. Mostly at home.

Laura: Tell me about getting into trouble. I don't know, I just think it's fun. You're so accomplished. We can....you don't want to talk about it?

Sam: Well, yes. It's interesting because I was mentoring a teen girl yesterday, actually for her TED Talk. And we were talking about that period just when you enter puberty and you're doing things that confuse you and sometimes they don't even make any sense. This is fun. So, yeah, I would do really naughty things at home and get into trouble with my mom.

Laura: You're not going to share what some of the naughty things were?

Sam: No, because...

Laura: OK.

Sam: They are too embarrassing.

(19:58) ADHD and hormones

Laura: I'll stop asking then. So, you mentioned puberty also, Sam. And before we were talking about, you know, hormonal changes with having a child. Tell me about your experience with just in general, like hormones and ADHD, and what you notice about yourself.

Sam: It's such an important topic because when we look at the gender differences between men and women with ADHD, for us it is the hormones that really changes a lot of our presentation biochemically. But then when you think about the social roles that girls have been subscribing to since they were young, then we also get another presentation. I definitely have quite strong traits that become more apparent during this large hormonal transitions during puberty, pregnancy, perimenopause, the three P's. And this is literally when your brain and your body is remodeling.

And for someone with potentially autism, that meant a lot of the changes that was happening was affecting my nervous system and changing the way that I behave in ways that would confuse me, but also then confused the people around me. And definitely in teenage years, especially in the early parts, I had a lot of challenges at home because being this person that's quite naughty, I was like taken to the police station once.

Laura: Ugh, I want to know what you did. You won't tell me. It's not fair, Sam.

Sam: You can only air the things that you've gotten over, right? And this is still something that I'm talking about in therapy.

Laura: You really don't have to tell me. You just keep teasing it, you know, but it's OK.

Sam: Yeah, yeah. But you know, this happened when I was 11, so I didn't do anything that bad, really. But then because in my mom's eye, there was no way she could discipline me. So, then that was the only way. But then I got to the police station and the police laughed anyway because it was like, "What, you brought her here for this? There's no law around this.

Laura: When you're ready to talk about it, Sam, I want you to come back on the show. Even if it's just five minutes and you're going to tell us what you did. OK? You promise?

Sam: Yeah. Yeah. I will actually, maybe. Yeah, yeah. That'll be great.

Laura: So, the three P's, puberty, pregnancy, and perimenopause and the body and brain are remodeling. That's so succinct and helpful for us to think about as women. That's really interesting. Thank you for that.

Sam: Yeah. Well, it's not me who came up with it. It's the doctor Lisa Mosconi.

Laura: You can take credit for it, but I appreciate your humility.

Sam: Yeah, I take credit for reading her book, but yeah, she's awesome. She's doing a lot of research into women's hormones and dementia, and also I don't think she's mentioned neurodivergence just yet, but I can just see the link because if you think about our brain and our hormones being remodeled, this is also the time when your body is undergoing significant transition. So, we know that estrogen affects dopamine, a cell content, and serotonin, a set of tricky neurotransmitters that regulate, you know, not just our ADHD traits, but the executive function, the mood, our sense of happiness and well-being, most our ability to sleep and regulate our emotions.

There is a ton of things in here. And for me, even until now, what I thought was strange about my ADHD was that during the good parts of my menstrual cycle, I don't actually need medication. And it is only during the luteal phase that I feel that "Oh gosh, what's happened?"

Laura: What's the luteal phase? Can you explain for the folks who don't know?

Sam: Yes.

Laura: And I might be one of those people who don't know. But I'll just say for the people who don't know.

Sam: Yeah. So, we have different phases of our menstrual cycle where there are a lot of hormonal changes that are happening, right? But basically estrogen rises, you know, up until the period of time where we get to ovulation, and then after ovulation, estrogen starts to dive. And then we get to luteal phase, which is early luteal phase, the week before our period. And then we get into the menstruation.

So, the luteal phase is the time when people usually get their premenstrual syndrome. And for many neurodivergent women, they tend to report that they have something called premenstrual dysphoria, which you would know about having interviewed so many people.

Laura: Yes.

Sam: And yeah, this is also something that a lot of women struggle with. Some people struggle with that 20 days in a month. You know, so it's not just that that week before the whole month, except for that one sunshine week.

Laura: Yeah. This is something that I personally actually have had to work on with doctors and people in my tribe, basically. It is really, really difficult. I, you know, the luteal phase terminology has escaped me, but we can call it the bad days, right?

Sam: Yeah. So, I divide them into four different seasons, you know, spring, summer, autumn and winter. So, the luteal phase to me is that period between fall and winter where you're just diving into the abyss of despair.

Laura: Yeah.

Sam: And I'm not saying it's going to be the same for everyone. I'm not even saying that it's going to be the same for you every month, too, because it's going to change because there's so many variables within our lives that can change how we sleep, how we eat, how we feel, which then also contributes to how we function cognitively and how we feel. So, it's like a loop. Isn't it? And it is during, yeah, the challenging parts of my cycle that I tend to feel that this is a little bit out of my control. And what kind of girl, you know.

(26:00) Where you can find Sam

Laura: Sam, tell me more about what you're working on and anything that you want to plug.

Sam: So, I'm doing a lot at the moment. I am working on creating a more comprehensive, neuroinclusive program for organizations. And so at the moment, I do a lot of neurodiversity awareness sessions. Some people managers training and a lot of fireside chats and panel discussions, but I am creating a package that would help companies to support not just the company awareness, but also management training and employee wellbeing and support.

Because I know we're talking a lot about hormones in this episode. But my fascination is always within the biological needs that we have. And actually a lot of our challenges may not even manifest if we get our biological needs, you know, supported. And then we think about our emotional needs and our relationship needs. And so, that's what I'm working on at the moment. And I'm doing a lot of writing. And maybe a book might be in the pipeline.

Laura: OK. Well, when you come back to tell us about your naughty mischief, you can tell us maybe about your book, if you're ready to share. So, now you have two reasons to come back. Yeah. Well, Sam is such a pleasure to chat with you. The website is ADHDgirls.co.uk. Everyone, check it out. Yes.

Sam: Yes. I also have a speaker website called samanthahiew.com, and that's more to do with my corporate work.

Laura: Yeah.

Sam: But "ADHD Girls" covers all the workshops that I do for the community as well as everything else.

Laura: Well, we'll put links to everything in the show notes. It's been really lovely to talk to you. And I don't think it's just because we're doing this in the morning for me. That was nice, but you do so much. And the fact that you're a scientist on top of all of the advocacy work that you do, the perspective that you bring is really eye-opening. I really appreciate you, Sam. Thank you so much.

Sam: Thank you so much, Laura.

Laura: As always, if you want to share your own "aha" moment, email us at ADHDaha@understood.org. I'd love to hear from you. Be sure to check out the show notes for this episode. We have more resources and links to anything we mentioned.

This show is brought to you by Understood.org. Understood is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, donate at Understood.org/give.

"ADHD Aha!" is produced and edited by Jessamine Molli. Jessamine, are you there?

Jessamine: Hi everyone. I'm still here.

Laura: And Margie DeSantis.

Margie: Hey, hey.

Laura: Our theme music was written by Justin D. Wright, who also mixes the show. Ilana Millner is our supervising producer. Briana Berry is our production director. Neil Drumming is our editorial director. Creative and production leadership from Scott Cocchiere and Seth Melnick. And I'm your host, Laura Key. Thanks so much for listening.