Sensory overload and self-advocacy with ADHD (Margaux Joffe’s story)

Margaux Joffe’s “aha” moment came during a shopping trip to IKEA with her mom. She had an intense sensory overload experience, which her mom later suggested could be ADHD-related. Margaux, who’d been diagnosed with anxiety and depression as a teenager, had never considered ADHD.

She was diagnosed with ADHD at age 29. In the years since, she’s become a global advocate for neurodiversity and accessibility. Check out her conversation with host Laura Key about justice sensitivity, workplace accommodations, and self-harm in undiagnosed women. 

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

Related resources

• ADHD and sensory overload

• ADHD and depression

• Understood.org’s 2024 Neurodiversity at Work Survey Fact Sheet

• Margaux’s website, margauxjoffe.com

Timestamps

(01:55) Margaux’s IKEA story, and “aha” moment

(07:34) Sensory sensitivity and ADHD

(09:03) Undiagnosed ADHD leading to anxiety and depression

(12:38) Breaking down during transitional periods

(14:16) Being told she was just “too much” as a child

(18:44) What has she learned in the 10 years since being diagnosed?

(21:12) What has she learned through working with other women with ADHD?

(23:29) Self-advocacy and disclosure at work

(26:35) What’s Margaux up to now?

Episode transcript

Laura: Hey, everyone, it's Laura. Before you begin this episode, I wanted to let you know that our guest Margaux and I talk about self-harm and its connection to ADHD during this episode. If you or someone you know needs help, please visit the American Foundation for Suicide Prevention at afsp.org. That's A-F-S-P dot O-R-G or call or text 988.

Margaux: It's been such a series of "aha" moments over a decade. And I think living with ADHD is a continual learning process, a continual unlearning process, I should say. Unlearning learning things that are no longer serving us and learning new ways to work with our brain. And it's a continual learning journey that I'm still learning things and still riding the waves.

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.

I am here today with Margaux Joffe. Margaux is a board-certified cognitive specialist and a global advocate for neurodiversity and accessibility. She was diagnosed with ADHD as an adult and later founded the Kaleidoscope Society to empower other women with ADHD. She's also led disability inclusion initiatives at Yahoo! and Verizon and launched the Tech Industries First Neurodiversity ERG, that's Employee Resource Group. I could go on and on. I will stop there for now. Welcome, Margaux. I'm so glad you're here today.

Margaux: Hi Laura. It's so great to be here on the "ADHD Aha!" podcast. I've been a listener and a big fan of Understood.org and all the work that the organization is doing.

(01:55) Margaux’s IKEA story, and "aha" moment

Laura: Thank you so much. We love that. Margaux, let's talk about your diagnosis at 29 years old. Can you talk about what was happening before you were diagnosed with ADHD? I believe you have a story involving IKEA.

Margaux: All right. So, it was a Sunday. I was going to Ikea because I had just moved to the San Francisco Bay area for a new job. So, I had been working in New York as a producer in the advertising industry, and I had just gotten a job out in the Bay Area and I was going to IKEA to get some furniture for my apartment. And my mom graciously offered to come with me and it was like hot in there for some reason, and it was really crowded. So many people, kids were screaming, and you know how IKEA is. It's like a long maze. Like you can't just get in and get out. You have to walk through the entire store, every single section to get to the end.

Laura: Like a casino. Yeah.

Margaux: Yes. Pass the meatballs. So, there's like lots of sensory information happening. And something I know now about my brain is that having ADHD, I am taking in a lot more sensory information from my environment maybe than, you know, other people. And so, I didn't realize at the time, but what was happening was I was getting overstimulated. All of the sights, noises, the lights, the people. And then also on top of that, I was making all these decisions about what pillowcases to get, what couch to get. It is like lots of decisions, which is very fatiguing on our executive functioning and our cognitive resources.

So, my brain battery was just getting worn down and I actually had an episode of sensory overload, which is when you have an involuntary reaction to overwhelming sensory input from your environment and it can look like many things to different people. But I just started literally shutting down, powering down. But I didn't know what was happening. And it wasn't the first time I had experienced this. I experienced this when I was at a concert in Central Park, many different times throughout my life. But I told my mom, I was like, "I just, I need to leave. I want to go."

And we had already picked out 90% of the things I needed. And she was like, "Oh no, we're almost done. Let's just like, you know, we just have to go and do this and that and we're almost done." And I just had like a whole shut down. I got extremely emotional and she was wonderful. You know, we got through the store, we checked out, we got home.

The next day, I'm in bed in the morning and I get a call from my mom, and she said, she's like "Margaux," and her voice was different. Her voice was not the usual, like chatting voice. She's like, "I want to talk to you about something really important. Is this a good time?" And I was like, "Uh huh, what happened?" And I was like, "Sure." And she's like, "You know, I was reading this article about ADHD in women, and I just want to read you this list and then, you know, tell me what you think."

Laura: Wow.

Margaux: And it was all happening so fast, I didn't even have time to, like have a reaction at that moment. And she started reading me a list of how ADHD can show up in women. And I just remember it was like she was holding a mirror up to my life. And as she started reading it, it was like tears started streaming down my face and it was completely unexpected. And I was like, "Oh my gosh. And she's like, you know, I spoke to your father and, you know, we think that it would be worthwhile for you to get a professional evaluation and we want to support you in that process.

And I was very surprised because growing up my parents instilled in us the core values around hard work, discipline, don't be lazy. My father is actually from South Africa, so he came to the States and he would always tell me, you know, "You're not going to be lazy. You're going to be hardworking." If I came home with an A-minus, he was like, "Why didn't you get an A?" So, I grew up in a very structured household that valued whatever you want for yourself, you know, you have to put in the hard work, have a positive attitude, and have discipline.

And even when we were sick as kids, I would hear things like, "You're fine, drink some water, get some sleep. So, it was more of like a holistic approach. And so, the fact that my parents were actually encouraging me to get an evaluation was a huge reason why I got diagnosed with ADHD. And I am forever grateful to my mom. Who knows if I would have even gotten diagnosed with ADHD if it wasn't for my mom. So, shout out to my mom for helping me get that ADHD diagnosis.

Laura: Let's talk about IKEA for another moment here.

Margaux: I love IKEA, by the way...

Laura: Yeah. There's no shade.

Margaux: So IKEA, if you're listening, I love you. I have two amazing turquoise bookcases.

Laura: I mean, had it not been for IKEA, I would have been just like sleeping on a sheet on my apartment floors for, like ten years.

Margaux: I just remembered. The founder of IKEA is neurodivergent.

Laura: I know. Yeah.

Margaux: The founder has dyslexia, right?

Laura: Yeah, pretty sure he has dyslexia. Yeah. Very interesting. No, but let me just say, to spend a moment of a bit of solidarity here. So, we've given all the good news about IKEA. It is such a one stop shop that you can just feel so stuck there. I think I've lost two relationships at IKEA and I'm actually not exaggerating.

Margaux: That's definitely a litmus test for a relationship. Put together a piece of IKEA furniture with someone and you're going to see their true colors and see, you know, it's going to test your communication skills.

Laura: Right. Or just like try to get out, right? And what you were saying about your mom being like, "But we're 90% done and we've done all this work," but then you have to go down to the warehouse where it's like a whole cornucopia of sensory information. It's a lot. You got to be ready for it. But then in all seriousness, like you said, that you, your body starts to shut down.

(07:34) Sensory sensitivity and ADHD

Margaux: Sensory overload. Like many people with ADHD, I have sensory processing challenges. I am very sensitive to sensory information in my environment: sound, smells, lights, textures, things like that. And that can have a real impact on me. And so, having that awareness now has been super helpful because I bring earplugs with me. I have on my keychain the loop earplugs. I am mindful of my cognitive resources like my brain battery, and I can know like, "OK, I'm in the green, I'm good." And then as I start to get worn down and I'm heading into the yellow, I'm like, "OK, maybe I need to take a break, I need to have a quiet moment," etc.

So, I'm able to design my day and my life accordingly. Just having new self-awareness about myself and what I need and how I am impacted by my environment. And I will say having sensory sensitivity, it's not always a bad thing, right? We see so many artists and highly creative people who have ADHD, and because they're noticing those small details in the environment that other people miss. So, you think about photographers. A lot of photographers I've worked with have ADHD, and they are noticing the small, like how the light is falling onto the wall behind the person that they're photographing. So, all of these. Being highly attuned to our environment, it's not good or bad, it just is. And so, being aware of it can help us.

(09:03) Undiagnosed ADHD leading to anxiety and depression

Laura: When your mom approached you, had you ever considered that you might have ADHD prior to that?

Margaux: Never.

Laura: Never.

Margaux: Never thought I had ADHD. I was, like many people, diagnosed with anxiety and depression when I was 18. So, I knew that there was something going on that made me feel unexplainable, be different and alone. And I didn't have anything to point to as to why I felt that way. So, I started struggling with my mental health when I was a teenager. And, you know, I turned to unhelpful things like drugs, alcohol, an unhealthy relationship. And over time, I found my way to healthier coping mechanisms. But I was really struggling.

And it all came to a head when I was 18 and I was going through the dark night of the soul, like asking myself, you know, why is life worth living? And really in that dark place and experiencing suicidal ideation. And it was that point that I actually did reach out for help and was diagnosed with depression and anxiety. And it was really finding my way into the creative field that gave me a place to belong and a sense of purpose.

But I still, you know, really was white-knuckling it through lots of depression and anxiety and sensory overload episodes all throughout my 20s until getting diagnosed with ADHD. But I never thought I had ADHD because the only thing I knew about it was what we all saw was the representation that was out there of hyperactive young boys. And I did well in school. So, like many people, I was missed. And it's really important that we have early identification of ADHD in young people so that they can get the support and resources they need versus getting punished or falling into self-harm.

Self-harm was also something that I was struggling with and I never even knew what was happening or that there was even a term for it until decades later when I was reading about ADHD and I was like, "Oh, that's what I was doing."

Laura: And there's a connection, right? There's data that show people with ADHD, women with ADHD, are more likely to engage and these types of behaviors. You know, sometimes I feel like people want to sweep under the rug the severity of ADHD. I mean, as someone with a daughter, right, who is showing signs of ADHD herself, I'm so glad that I'm able to spot this and notice this now because it's not the ADHD that makes me scared. It's the things that can come with it, right? And the types of behaviors that it can lead to.

Margaux: Yeah. Dr. Hallowell talks about ADHD as a high-stakes poker game, and I love that analogy because a lot of people don't realize how high-stakes it can be. So, having ADHD, you can either end up as a very successful CEO of a company or you can end up incarcerated. And it really can depend on the color of your skin that you were born with the circumstances of your life. If you have that early identification and support to be like you're not lazy, crazy or stupid, you're not a bad kid, we don't need to punish you. You actually have different brain wiring. So let's learn about that. Let's learn about the things that you need to be successful in school, in your career so that you can have quality of life.

We don't have to struggle. And that's why I'm so passionate about the work that I do, because I want people to have an easier go of things. I don't want young people to struggle unnecessarily. When there's answers out there, you can learn about your brain, you can get accommodations, you can support yourself, and life can be a lot of fun with ADHD.

(12:38) Breaking down during transitional periods

Laura: What you described, that dark period when you were 18, technically, you're an adult. Did your mom, your mom and dad, do they know what was going on?

Margaux: So, like many people with ADHD, a lot of breakdowns have happened during transitional periods in my life. So, for me, it kind of came to a head when I was transitioning from high school into college. So, in high school, like I said, very structured upbringing. I was actually a junior Olympic-level runner, both cross-country and track and field. And I think all of that exercise, I mean, I was training six days a week, running up to six miles a day, if not more. And I think that really helped keep a lot of my ADHD symptoms in check. Not that they weren't still there, but I was really in a highly structured environment eating healthy food at home, having, you know, a schedule.

And then when I went to college, I decided I didn't want to be an athlete anymore. So, I was no longer part of a team. I wasn't exercising consistently. I was staying up far too late, eating lots of pizza and, you know, having fun as a young person. And I was living in the dorms, which, you know, looking back, I can see that was sensory hell, you know. You know, you're in a tiny shoe box with a roommate. And our room, for some reason was the room everyone wanted to come and hang out.

And so, there was always tons of people in our room. So I never had any sensory breaks. I was always overstimulated. I didn't realize that. And so, of course, I would self-soothe by getting high, whatever it may be. So just, you know, my lifestyle and my behaviors were not helping my brain, not helping my cognitive functioning, not helping my mental health. And so, things just started to downward spiral.

(14:16) Being told she was just "too much" as a child

Laura: I want to, like give your mom another shout-out for finding that information and pointing that out to you. Would she have been open to that, like when you were younger, do you think?

Margaux: Definitely. I think, you know, my parents, like most parents, were doing a great job doing the best they could with the information that they had at the time. And there wasn't a lot known at the time about how ADHD shows up in women and girls. And the fact that I had more of an inattentive presentation of ADHD and more of like the daydreaming quality, I wasn't as physically hyperactive. I did get in trouble in school starting in second grade for being disruptive in class.

But it was always, I remember my teacher in second grade wrote on one of my report cards "Margaux needs to learn how to control her enthusiasm." So, it was just the messaging was, "You're just being too much. You need to settle down. You need to tone it down. You need to get focused." The messages started evolving, right over the years. "You just need to get organized, stop being lazy, stop being selfish." And you know, all of those messages and you know the stat by the age of 12, young people with ADHD have received 20,000 more negative messages than their peers.

Laura: Margaux, I'm having trouble picturing you as too much. Did that message that was given to you so young resonate so much that like you mask a lot, or is that just that, you know, you're just older now and…

Margaux: I'm older now and I have outlets for my exuberant expression. I mean, I'm an exuberant, enthusiastic, passionate person, playful. And I think after the diagnosis, part of my journey was coming back home to myself and, you know, moving through some of that unmasking to get back in touch with the playful spirit that had been toned down through some of my coping mechanisms, which were like perfectionism, people pleasing workaholism, right? This is very common. We see a lot of that in our community.

But I'll say, for example, like things that I still feel bad about in second grade, things that I would do impulsively for no reason, like I stole this kid's little micro machine car and threw it over the fence for no reason and he couldn't get his toy. And then this other guy, for no reason, I just decided to take the bouncy ball and throw it as hard as I could. And then it was on the roof and it was stuck because it was a flat roof.

So, I would do these impulsive things and I'm like, why? And then I would feel so much shame. And I mean, I was just a little kid. I was in second grade, but I was like, Why I would just do things without thinking? And that was where the impulsivity was coming in. And also, I will say, like in class, I was very chatty. So, I'm sure it was annoying to the teachers. And I had this little rabbit head that went on the end of the pencil and you could like wind it up. It would make sound and movement and it was disruptive.

But if I could go back in time, I would recognize, "Oh I probably needed like a fidget tool. I was just stimming. This was just self-stimulating behavior to regulate my nervous system, to process my environment, to stay engaged." And I think that one of the issues is we tell kids, "You need to sit still. You need to look at me when I'm talking." That's how we teach kids that they pay attention.

But sometimes paying attention looks differently. Sometimes paying attention means you're moving your body, you're fidgeting, you're doodling, you're not looking at the teacher. But that is actually how you're processing the information. You're encoding it and you're learning.

Laura: My daughter told me recently, it was so, it just tugged at my heartstrings so much. "Mom, I feel trapped in my body and I feel like I'm chained to my desk. I just need to move." But I'm just like, man, it's hard to be a kid. It is so hard to be a kid. I'm fortunate to work at an office environment where, like, we are very neurodivergent friendly, you know, and I've got my fidgets and I move around and I walk as much as I can all day. I feel like I just must have repressed and blocked out how incarcerated I would feel like just sitting there all day long.

Margaux: Absolutely. I think life gets better as an adult because as we move forward in our life every year, we have more and more agency. We have more and more choice making over how we're spending our time, what we're doing when we're in school. We're expected to do all these different subjects, even if we're not interested in them. And we know about how the motivation works differently in the ADHD brain. Our reward pathways are different, so when something's not interesting to us, it can be very difficult.

(18:44) What has she learned in the 10 years since being diagnosed?

Laura: You were diagnosed when you were 29 years old. It's now ten years later. What have you learned so that I can claim it as something I learned about myself too?

Margaux: I mean, I've learned so many things that I ended up creating a whole program called ADHD Navigators for other people to learn how to work with their brain, their unique brain, especially in their career. I think one of the biggest things is, although living with ADHD can be challenging, the real challenge is that most of us were never taught how to work with our brain and we were only told the things we needed to fix about ourselves. And so the biggest shift for me has been shifting from being in a place where I was focusing on things I needed to fix and change and correct about myself to shifting into the role of being a designer of my life.

So, being like, "OK, if I accept that my brain is wired differently and there's ways in which I need to work differently, how can I change the way I'm doing things? How can I change my environment so that I can thrive?" So, I love to think about it like being a designer. And when I talk about being a designer, it's not about making things pretty. It's about making things functional and hopefully delightful.

So, I've had the opportunity to work with product teams when I was working in tech, and they would always talk about finding and removing friction if you want to improve the user experience. It's about finding the friction, removing the friction, and it can be simple. So, when I lived in New York, I did some continuing education at SVA, the School of Visual Arts. And I was taking a design class and we were in the computer lab, and the teacher, he was like, total New Yorker like design is easy. You make a move and you ask yourself, "Is it better or worse?" I'm horrible at impressions. So, that was a horrible impression, but.

Laura: I liked it.

Margaux: He was basically like, "It's easy. You make a move and then you look and you ask yourself, Is it better or worse?" And it's kind of like life is that way, right? We like, we see something that's not working. We try something new, and then we reflect and we ask ourselves, "OK, is it better or worse?" I locked myself out and I got a lock box and I got an extra set of keys. And there was a couple of times I locked myself out again, but it didn't matter because I had my lock box. So, we can do things to design our life so that we can reduce that friction in our life. Finding what are where those areas of friction or those challenges, and then trying out different solutions to support yourself.

(21:12) What has she learned through working with other women with ADHD?

Laura: But Margaux, I know that through Kaleidoscope Society you've spoken to so many women with ADHD. What have you learned?

Margaux: Oh my goodness. Women with ADHD are some of the most badass women that I know. So creative, loyal, curious, spontaneous, empathetic. Also funny. And I think one of the coolest things is the justice sensitivity. So, there's actually studies that show that people with ADHD have higher levels of justice sensitivity. So we can be very attuned to like what's right and wrong and wanting fairness and wanting to make sure that we're doing the right thing. So, it was very cool to meet, you know, a lot of people that are doing advocacy work in various ways. So, there are some incredible gifts that come with ADHD, and there's also some real challenges.

Laura: I'm so intrigued by this idea of justice sensitivity and people with ADHD being really tuned into that. It resonates with me.

Margaux: Yes. And look at you. You're working in a change-making role where you're creating this podcast to bring education and awareness, to make a change and make a difference.

Laura: You just spun that in a much more even positive way that I was thinking of myself too. But I appreciate that about you, Margaux.

Margaux: Everything is two sides of the same coin. So, on one side, the justice sensitivity, it can be an amazing gift. On the other side, sometimes our justice sensitivity can show up in areas where it's not really needed. So, if we're at work and we get in a disagreement with somebody about something that's really not a priority, it's really not a big deal. Sometimes we can get hyperfixated and it's like our way or the highway and we can get into this rigid black and white thinking.

So, it's something that I invite people to be aware of, be mindful of, and pausing and asking yourself, "OK, is this situation really worth my brilliance, my creativity, my justice sensitivity? Or can I be OK with letting this go? Can I be OK with letting this process be the way it is, even though it's not the way I would do it, but this is the way my co-worker wants to do it? Can I be OK with just letting it go and moving on and focusing my life, energy and my brilliance on the things that really deserve my attention?"

Laura: You got it. That was the other side of it that I was thinking of when you brought it up. So thank you. That was really helpful framing. Thank you.

(23:29) Self-advocacy and disclosure at work

Tell me about your, more of your advocacy work. And the last time we chatted you were interested in talking also about self-advocacy and disclosure at work.

Margaux: Yeah. Self-advocacy is such an important and essential life skill. Not only in the workplace, but just every day in our life. And self-advocacy, simply put, how I define it is, number one, knowing your needs. And then number two, being able to communicate your needs. What happens is a lot of people with ADHD, they may not even know what they need. Many times it's because they weren't diagnosed until they were an adult, so they never had the opportunity of learning about their ADHD, getting accommodations in school, getting to practice, talking about what their needs were.

A lot of people had their needs invalidated for years, if not decades, saying, "Oh you're just being too sensitive. You're just being lazy. You just need to fill in the blank," right? So, there's this process of like getting back in touch and discovering, "OK, what do I need in this situation? And then how do I communicate that?" So, when it comes to the workplace, unfortunately, there's a lot of fear around even asking for what you need in the workplace. And I know Understood did a study about this. They surveyed, I think, over 2,000 professionals. And one of the key findings was that 1 in 4 respondents said that they were either fired or demoted after asking for accommodations at work.

Laura: Margaux, can I just say that you know the data from my organization better than I know it and I feel like, I mean, I'm just going to offer you my job right now.

Margaux: No, I mean, I think, you know, what I appreciate about Understood.org is that they put the information in plain language.

Laura: Thank you. Yeah, we try.

Margaux: So, there's a lot of fear in the workplace around even disclosing that you have ADHD. And so, I tell people you can still advocate for what you need to be successful, whether or not you decide to disclose your diagnosis. But there's a perception that making accommodations for employees with disabilities is expensive and complicated, and it's really not. Most accommodations are free or low cost, and sometimes it's like a very simple adjustment that can make a huge difference.

But what I also tell people is it's not just about asking accommodations from your employer. It's also about what are those self-support strategies that you can put in place. Because a lot of what has transformed my experience is actually things that I'm doing to support myself and that don't even require like a formal accommodation, whether it's having a little fidget thing, like I have brought this on a date before.

Laura: I love that.

Margaux: It was a second date. It was a second date. I had it in my purse and then we were like eating and I just had it out under the table. And they were like, "What's that?" And I was like, "Oh it's a fidget. And, you know, it helps me, blah, blah, blah," and I explained, because if you go on a date with me, inevitably you're going to be getting some disability education. Yeah, because I just figure if you don't want to do it because I have a fidget toy, then it's probably better I know that now than later.

Laura: I love that. I've been coming to work every day with a new fidget. It was a fidget holiday season for my family. So, we've been trying out all kinds of stuff. It's been really fun.

(26:35) What's Margaux up to now?

Tell us what you're doing now. What do you want the audience to know about your current work or what's coming up for you?

Margaux: So, I have a small business called Minds of All Kinds. I've been running this for about three years, and we're creating a platform for neurodivergent people to learn, connect, and lead. So, I work with individuals and organizations, with individuals. We have our flagship ADHD Navigators program, which is all about learning how to work with your unique brain in your career. We also have community events where I bring in special guests and experts to come in and do events for the community.

Like we had Eric Garcia, who's an autistic journalist and author of "We're Not Broken: Changing the Autism Conversation," so he came in and did a Q&A with our community. And then with companies, I do speaking and consulting. So, I'll go in and do trainings, workshops and consulting on special projects. So, it's a lot of fun and I'm really passionate about the work that I'm doing. And if anyone wants to learn more, they can go to mindsofallkinds.com for all the info.

Laura: Well, Margaux, I'm so grateful for all of the work that you do. You're making such a huge impact and just the education that you're bringing in and the stigma reduction work that you're doing. And I'm really grateful to you and I'm so glad that you came on the show today. Thank you for spending this time with me, for playing with some fidgets. You can watch us on YouTube. You can see me and Margaux playing with our fidgets right now. But yeah, thank you so much for being here today.

Margaux: Yes, thanks for having me on.

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. Say hi, Jessamine!

Jessamine: Hi everyone.

Laura: And Margie DeSantis.

Margie: Hey, hey.

Laura: Video was produced by Calvin Knie. Our theme music was written by Justin D. Wright, who also mixes the show. Ash Beecher 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.