Stories from ADHD camp

Summary

Climbing the Walls: Stories from ADHD Camp

Podcast Information:

• Title: Climbing the Walls
• Host/Author: Understood.org
• Description: Climbing the Walls is an investigative limited-series podcast by Understood.org that delves into why women were historically underdiagnosed with ADHD and examines how the surge in diagnoses post-pandemic is reshaping our understanding of the condition.
• Episode: Stories from ADHD Camp
• Release Date: April 30, 2025

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Introduction: The Modern ADHD Phenomenon

In the opening segment, host Danielle Elliott sets the stage by highlighting a concerning trend: the average attention span has decreased from 12 seconds to 8 seconds over the past quarter-century. She references Johann Hari's 2022 book, Stolen Focus, which explores how modern life—characterized by pervasive technology, pollution, and fast-paced living—might be contributing to a rise in ADHD-like symptoms across the population.

Danielle shares her personal connection to the topic, having read Hari's book after a recommendation from a partner grappling with his own ADHD symptoms. She summarizes Hari’s experiment of living in a secluded seaside town, disconnecting from technology, and observing significant improvements in focus and mental clarity. This experiment led Hari to propose that modern life's "addiogenic culture" might be inducing ADHD-like symptoms even in those without a genetic predisposition. Danielle introduces the notion that while increased ADHD diagnoses might risk misdiagnosis, they also shed light on how modern conditions exacerbate ADHD symptoms for those genuinely affected.

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The ADHD Family Camp: An Oasis of Understanding

Approximately two weeks after an impromptu invitation, Danielle attends an ADHD family camp hosted by the Hallowells at a boarding school in northern Michigan. She notes the camp's deliberate departure from the frenetic pace of modern life, providing a tranquil environment where children with ADHD can play freely, and parents can engage in meaningful connection and support.

Upon arrival, Danielle observes the camp’s welcoming atmosphere. Ned Hallowell, a leading ADHD expert, greets participants with humor:

“That's okay. This is ADD land. We don't expect everybody on time.” (03:07)

The camp serves as a safe haven where women from diverse backgrounds feel comfortable sharing their ADHD experiences candidly. Danielle emphasizes the collective yearning for greater awareness and improved treatment options among the participants, highlighting the camp's role in fostering a supportive community.

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Personal Stories: Women Navigating Late ADHD Diagnoses

Tamsin’s Journey: Shock and Acceptance

Tamsin, a 48-year-old woman from the UK residing in California, shares her recent ADHD diagnosis and its profound impact on her life. She recounts how years of battling depression and questioning whether her struggles were due to life circumstances or ADHD left her blindsided by the diagnosis:

“So much of my life now makes sense. Like, decisions I've made, friendships I've had, careers I've chosen, laundry piles.” (09:20)

However, Tamsin also expresses fears about others perceiving her ADHD as a personal failing:

“That's my biggest fear of being like, oh, now we can, like, you know, every argument I've ever had, oh, it's because you're shit.” (09:35)

Her story underscores the emotional complexity of receiving an ADHD diagnosis later in life, balancing relief with anxiety about self-perception and relationships.

Elaine’s Path: From Overwhelm to Empowerment

Elaine, a volunteer at the camp and a nurse from rural Michigan, shares her transformative journey with ADHD. Initially dismissing her diagnosis due to familial and professional responsibilities, a pivotal moment of personal crisis led her to seek support:

“I gotta do something. Either I'm gonna learn to do some. Stuff and rework my life, or I'm gonna fall apart.” (12:24)

Elaine highlights the challenges of accessing ADHD care in underserved areas and the crucial role of the camp in providing her with the necessary support. Her initiative to create a makeshift mail center at the camp exemplifies her commitment to fostering community among parents:

“Thank you. That will never happen to me again. That meant a lot to me.” (11:07)

Elaine's story illustrates the intersection of personal resilience and community support in managing ADHD.

Michelle’s Struggle: Overcoming Stigma and Finding Help

Michelle, a 52-year-old nurse practitioner, recounts her delayed ADHD diagnosis and the hurdles she faced in seeking recognition and support. Initially dismissing her symptoms despite a familial history of ADHD, Michelle encountered significant resistance from her addiction support group:

“They were like, I can't believe you're falling for that online stuff. It's such crap.” (18:40)

Undeterred, Michelle pursued a formal diagnosis, which brought transformative changes to her life:

“I'm not running crisis to crisis anymore, you know, and I don't know if that was more my alcoholism and certainly the adhd.” (20:35)

Her experience underscores the pervasive stigma surrounding ADHD and addiction, as well as the importance of persistent self-advocacy in obtaining appropriate care.

Nancy’s Legacy: Breaking Generational Cycles

Nancy, a 74-year-old grandmother, shares her lifelong struggles with undiagnosed ADHD and the challenges of addressing it later in life. Diagnosed after her granddaughter and daughter were identified with ADHD, Nancy reflects on the compounded difficulties of managing ADHD without prior understanding:

“Everything is hard. My struggle made me feel not good enough.” (28:52)

Despite frustrations with the delayed diagnosis, Nancy expresses hope through her family's new understanding and support:

“You know, that's just the way of the world. ... there’s been progress made.” (31:41)

Nancy's narrative highlights the generational impact of ADHD diagnosis and the potential for familial support to mitigate long-standing challenges.

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Recurring Themes and Insights

Throughout the episode, several key themes emerge:

1. Late Diagnoses in Women:

   • Most women featured were diagnosed in their 40s or 50s, often due to historical biases and lack of awareness about how ADHD presents in women.

2. Impact of Modern Life:

   • The "addiogenic culture"—characterized by constant connectivity and overstimulation—appears to exacerbate ADHD symptoms, making them more noticeable and impairing.

3. Gender Disparities:

   • Women’s ADHD symptoms are often misattributed to other factors like anxiety, depression, or life circumstances, delaying accurate diagnosis and treatment.

4. Role of Perimenopause and Menopause:

   • For some women, hormonal changes during perimenopause and menopause can intensify ADHD symptoms, prompting late diagnoses.

5. Community and Support:

   • The camp serves as a critical support system, illustrating the importance of community in managing ADHD and fostering mutual understanding among participants.

6. Access to Care:

   • Elaine's story particularly highlights the struggle for adequate ADHD care in underserved communities, suggesting a broader issue of accessibility and affordability.

7. Generational Impact:

   • Nancy’s experience demonstrates how diagnosing and treating ADHD in one generation can benefit subsequent generations, potentially breaking cycles of misunderstanding and neglect.

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Conclusion: Progress Amidst Persistent Challenges

As Danielle reflects on her time at the ADHD camp, she acknowledges significant progress in awareness and diagnosis, particularly among women who previously went unrecognized. However, she also notes ongoing deficiencies in care access and the emotional complexities that accompany late diagnoses.

The episode closes with Danielle noting that every woman she spoke to at the camp was diagnosed later in life, largely due to past gatekeeping and misrecognition of ADHD symptoms in women. She raises important questions about whether life stages like perimenopause could be tipping women from mild ADHD traits to more severe symptoms, contributing to the recent spike in diagnoses.

A concluding anecdote from Sue Hollowell, who discovered her ADHD during perimenopause despite being surrounded by expertise in the field, encapsulates the episode’s central message:

“But it’s always a bit annoying about the way women are treated. So now being a woman and having ADHD, it's like this double whammy of like being annoyed about the way the world is.” (26:52)

Danielle leaves listeners contemplating the multi-generational benefits of increased ADHD awareness and the imperative to continue improving access to care, ensuring that more women can receive timely diagnoses and support.

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Notable Quotes

• Danielle Elliott: “Here's a not at all fun fact. The average attention span has dropped from 12 seconds to 8 seconds in the last 25 years or so.” (00:00)
• Tamsin: “Why I got diagnosed with ADHD two weeks ago.” (05:43)
• Elaine: “I just need someone to clap for me.” (10:39)
• Michelle: “I'm not running crisis to crisis anymore, you know.” (20:35)
• Nancy: “I was born too soon, that they didn't have the diagnosis.” (30:04)

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Final Thoughts: Climbing the Walls effectively highlights the nuanced and deeply personal journeys of women navigating late ADHD diagnoses. By sharing these stories, the podcast underscores the importance of ongoing advocacy, improved diagnostic practices, and accessible treatment options to support women and their families in understanding and managing ADHD.

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This episode was produced by Danielle Elliott, with contributions from Neil Drumming (Editing), Cody Nelson (Sound Design), and a dedicated team at Understood.org.

Transcript

[Danielle Elliott]

Here's a not at all fun fact. The average attention span has dropped from 12 seconds to 8 seconds in the last 25 years or so. We are all increasingly struggling to focus. The writer Johann Hari attempts to reckon with this phenomenon in his 2022 book, Stolen why you can't Pay Attention and How to Think Deeply Again. I read it in 2023 after a guy I was seeing recommended it. He was in the middle of wrestling with his own ADHD symptoms. Anyway, the author of the book moved to a seaside town as an experiment. He cooked for himself. He walked everywhere. He read a daily newspaper and read books. He left his smartphone at home and called his family from a landline. Essentially, he lived in his immediate surroundings. Within weeks, he felt like his old self. He could think clearly and write for sustained periods of time. He enjoyed conversations with strangers outside of the pace of modern life. His symptoms ebbed. After three months, he left this little paradise and set out to find reasons why it's so hard to achieve this feeling in regular life. He found that many forces beyond our control are sort of short circuiting our brains. Things like pollution in the air, chemicals in our food, tech companies creating addictive products. In essence, the conditions of modern life are not good for our brains, neurotypical and neurodivergent brains alike. And many of the habits of modern life aren't good either. To be clear, Stolen Focus is not about adhd. But the book hones in on what Ned calls our adiogenic culture and why more people might be developing what he called environmentally induced adhd. That is to say, the way we live these days is manifesting ADHD like symptoms, even for people who do not have adhd. Does accepting this fact open the door for greater numbers of misdiagnosis? Yes. But for those who truly have adhd, it reveals how severely modern life might be intensifying ADHD symptoms. About two weeks after I shared dinner with the Hallowells and talked myself into an unexpected invitation, I showed up at their camp. The ADHD family camp was being held at a boarding school in northern Michigan. As I pulled onto the school grounds, I realized the decision to go there was pretty impulsive. And now that I was there, I didn't have much of a plan. I had hoped at the very least to spend the week connecting with women with adhd, maybe a few who were recently diagnosed. But beyond that, I didn't really know what to expect. I got there towards the end of check in and walked up at the same time as a family.

[Ned Hallowell]

Hello. How are you guys?

[Danielle Elliott]

The mom apologized for being late.

[Ned Hallowell]

That's okay. This is ADD land. We don't expect everybody on time.

[Danielle Elliott]

We don't expect everybody on time. The Hallowells camp is, for the most part, outside of the pace of modern life, outside of our addiogenic culture. It's Ned's Vermont, or the author's seaside town from Stolen Focus. It's a week in the woods in a beautiful place where kids can run around and parents can connect with each other. In other words, it's a pretty ideal setting for people with ADHD and their families. But even here, as I talked to these women, women from all over the world who had decided this was a safe enough space to speak candidly about their experiences, the stories of their struggles felt real and immediate. No matter their background or experience, they were all voicing a desire for more awareness and better treatment. Through my conversations at the camp, I started to see how much more needs to be done if there is to be any hope of reaching all the women who stand to benefit from knowing a name for the way their brain works. In this episode, I'm going to share four of those conversations. This is Climbing the Walls, a podcast where I try to figure out why so many women are being diagnosed with adhd. I'm Danielle Elliott. The first morning of camp, the kids went off on some sort of outdoor adventure, and the parents met for a group session with Sue Halliwell. They gathered in a large conference room and pushed the tables into a big U. Sue stood at the front and asked the parents to introduce themselves. The first woman said her wife was recently diagnosed with adhd. A few more moms said they were diagnosed in the last few years. Some discovered their ADHD after their kids were diagnosed or through TikTok videos. One of the women shared something I've never heard before. Her mom was diagnosed with Alzheimer's and she went in for a screening. In the course of that screening, the doctor diagnosed ADHD. Her daughters were later diagnosed. About 2/3 of the way through the introductions, a woman looked a bit nervous. As soon as she spoke, I understood.

[Tamsin]

Why I got diagnosed with ADHD two weeks ago.

[Danielle Elliott]

I caught up with her a few hours later to see how she was feeling.

[Tamsin]

When I first came in this morning and saw everyone in here, I felt like I had a big neon light with adhd flashing arrow pointing at my head, like, everyone's gonna know because I'm just so aware of it. Like everything I'm doing or saying or thinking, I'm reanalyzing the way I am in the world. So that's kind of weird, but I'm glad I'm doing it in this environment where other people are aware of the everyone or, you know, a lot of people here have adhd. I think the timing was good.

[Danielle Elliott]

Her name is Tamsin. She's from the UK and lives in California with her husband and their two children who both have adhd. They'd booked the trip months earlier in hopes of finding ways to support their kids and create more harmony in their family.

[Tamsin]

And then, yeah, just by chance, I got diagnosed with ADHD as well.

[Danielle Elliott]

By chance. For several months, a doctor had been treating Tamsin for depression. She was taking antidepressants but was having trouble with them.

[Tamsin]

I was really suffering badly from withdrawals, so I went to a psychiatrist to find out about getting off the antidepressants and she just diagnosed me with adhd. And then I went back and had some more assessments and tests and yeah, I was just really blindsided, really shocked. But as soon as I thought about it even a little bit, I was like, how could I get to 48 and not have any idea, you know, like two kids with ADHD? I've worked in mental health, my brother's a teacher. And I just was completely blindsided by it.

[Danielle Elliott]

Tamson had been seeing a therapist before seeing the psychiatrist. When she got the diagnosis, she talked to her therapist about how they missed it.

[Tamsin]

We kind of came to the conclusion it's because when. So I'm 48 and I had a parent that was narcissistic, now had some trauma. I'm now perimenopausal. I've got kids with ADHD. I had like, I think six years of IVF treatments. You know, I mean, I'm an average 48 year old woman. Like I've got massive like life stuff being behind me. So was it, was the way I am in the world any, all of that or was it adhd?

[Danielle Elliott]

These questions come up so often in adult diagnosis. Is it perimenopause? Is it a result of years of trauma? Is it just the way we are in the world or is it adhd? For decades, doctors erred on the side of it being everything else. Depression, anxiety, bipolar disorder, menopause, life. Hearing that, Tamsen's psychiatrist instead recognized the symptoms of ADHD and knew how to properly assess her experience. Seems like a sign of progress. She didn't bring the information to her doctor. Her doctor suggested it and treated her appropriately. Progress, I should add. This is one woman's experience. Another woman at camp told me her doctor refused to consider ADHD and kept insisting she actually had anxiety. She had to switch doctors. So receiving appropriate care still happens on a case by case basis. But for Tamsen, someone finally connected the dots, and that brought her a lot of relief.

[Tamsin]

So much of my life now makes sense. Like, decisions I've made, friendships I've had, careers I've chosen, laundry piles. Like, so much makes sense.

[Danielle Elliott]

But the diagnosis also brought on some new fears.

[Tamsin]

And I think the worst bit is worrying that people in my life are going to say, oh, now we know what the problem was. It was you. Like, that's my biggest fear of being like, oh, now we can, like, you know, every argument I've ever had, oh, it's because you're shit. But I'm also learning that, like, that's part of the ADHD as well. It's like feeling that everything is my fault and I'm just not doing something quite right.

[Danielle Elliott]

She's beginning to understand that inner negativity. And she told me she hoped to learn more during her week at this camp.

[Ned Hallowell]

Elaine, you ready?

[Tamsin]

Okay.

[Ned Hallowell]

Okay. So if.

[Danielle Elliott]

During another parent session, Sue Hollowell paused the discussion to introduce a woman named Elaine. Elaine is a volunteer who runs an arts room at the camp. She wanted to tell the group about the arts project they could try that week and why art is a great outlet for people with adhd. But first, she needed something from the group.

[Elaine]

And I'm going to ask you to do something that's going to sound very, very egotistical on my part, but I just need this. I am celebrating 35 years of being a nurse this year, and I just, in the worst way, need someone to clap for me.

[Danielle Elliott]

The applause lasted more than two minutes.

[Elaine]

Thank you. That will never happen to me again. That meant a lot to me. You don't know me, but you were willing to say, good job, Yay. And that made me feel great. So we're gonna help each other.

[Danielle Elliott]

Elaine went on to share her story with the group. She said she'd learned a lot about herself since being diagnosed with adhd. Well, not at first. At first, she ignored her diagnosis. She was busy taking care of her four kids and her husband and with work. She's a school nurse in a rural part of Michigan. Then a few years ago, within a span of two months, all of her kids moved out of their house and her husband started working a night shift.

[Elaine]

So if I had an audio right now, I would push the button that said crickets chirping because I was like a deer in the headlight. You Know what I'm saying? I was just like, what in the world am I supposed to do? My whole identity was always in being a nurse, but being a mother. So the things that held me up to make me feel like I was somebody worthwhile were falling apart. I'm sorry if I cry. So what I did was I said, I gotta do something.

[Ned Hallowell]

Either I'm gonna learn to do some.

[Elaine]

Stuff and rework my life, or I'm gonna fall apart. And falling apart is just never a.

[Michelle]

Good option, you know?

[Danielle Elliott]

So Elaine stumbled into art, but the story I'm really hearing is how she started to grapple with her adhd. Later, I caught up with her to ask more. She told me that she started to recognize her ADHD after her son was diagnosed. It took a while for a doctor to diagnose him.

[Elaine]

We live in an area that is very underserved, very, like, low income. So most people can't find people to diagnose them or have the money to be able to do the things that they need to do in order to get help. So it's just so hard to get the right people to listen and to help and to believe that ADHD is a thing. You know, it took a while to.

[Danielle Elliott]

Get her son's diagnosis and even longer to get her own. And when she did, she felt like she didn't have time to deal with it.

[Elaine]

But then I kind of put it aside for a while, because sometimes you just don't have the bandwidth to do it all. You're like, I know that this probably applies to me, but I'm too busy working and being a mom, and I just can't get to it right now. You know, you put your family first, you put other things first. And then until you kind of get into this spot where I've got to do something because I don't feel good, you know what I'm saying? And this isn't going to get better.

[Danielle Elliott]

Eventually, she found Ned Hallowell's podcast and reached out to him.

[Elaine]

I was feeling kind of insecure, and I thought it would be nice to write to somebody who would understand how I felt.

[Danielle Elliott]

They emailed a few times, and he mentioned camp.

[Elaine]

They had this camp in Michigan, and I live in Michigan. So I was like, I have to go and volunteer. I've got to do this. I honestly felt like it was like, I'm supposed to do this.

[Danielle Elliott]

This is her fourth year at the camp. She keeps coming back because it gives her a chance to connect and to overcome the lack of access to appropriate care in the area where she lives. She wouldn't be able to afford to be here if she weren't volunteering. It's not an opportunity most women in her situation can replicate. As part of her role at the camp, Elaine helps the other parents connect with each other. When she spoke to the group, she mentioned one of the ways she's doing so. She'd created a makeshift mail center at the back of the room where parents could leave each other notes throughout the week. It was simple little envelopes pinned to a board, each with a parent's name on it. On my way out of one of the sessions, I noticed a woman dropping a note into each mailbox.

[Michelle]

I'm writing one for everyone.

[Danielle Elliott]

These are notes.

[Michelle]

Oh, shit. Look what I did. I wrote it on two sides. What a dope.

[Danielle Elliott]

This is Michelle. She has long, curly gray hair and wears t shirts. She's 52, which makes her one of the older moms at the camp. And I don't know if it's age or life experience or. Or just her, but she has a very calm vibe. What did you write on them?

[Michelle]

All different stuff, you know, like, be well or less is more or it's a good day to have a good day.

[Danielle Elliott]

Michelle's a nurse practitioner. Her son was diagnosed with ADHD about six years ago, but at the time, she didn't suspect she had it. In 2019, she started a post grad course in psychiatric mental health. The coursework included the dsm. When they got to the pages on adhd, the descriptions felt familiar. She sent a photo to her mom, her ex husband, and a few close friends who have known her at different points in her life. Did any of them think Michelle fit the criteria?

[Michelle]

And my mom came back and she was like, I don't really know. You know, you only fit like six here and five there, you know. And then my ex husband sitting pretty much had similar reaction, you know, well, you only fit some of them, not all of them, but you fit a lot of them.

[Danielle Elliott]

She learned that people with adhd have a 60% higher rate of developing addiction. She was about four years sober at that point and part of a support group called Healthcare Providers with Addiction. The group met Weekly. They knew her well. So she asked them what they thought about her possibly having adhd, and they lost it.

[Michelle]

They were just like, I had really, really upsetting, negative reactions. They were like, the medicine's addicting. What are you thinking? You shouldn't diagnose yourself and da, da, da, da. And it was like, I just. I just couldn't Believe the response. So I kind of left it. And, you know, and like, a couple months went by. A girlfriend of mine came over, and she was watching me around my room, my kitchen, and she said, do you have adhd? And she's like a retired social worker. And I said, well, I do fit a lot of the criteria. And I told her about my group experience. And then, you know, and she was like, your son got it from somewhere.

[Danielle Elliott]

Her group was wrong. Research shows that the medications most commonly used to treat ADHD are not addictive when used properly. The drugs have also been shown to have significant benefits in reducing substance abuse and in helping people with ADHD who are in recovery to maintain sobriety. Unfortunately, her group's response is not uncommon in recovery groups. Michelle was wise to continue the conversation, and her friend was right. ADHD is highly genetic. Many parents pass it on to their children. She and her friend talked through it, and Michelle took an online self assessment. It came back as hyperactive with some inattention and impulsivity. She brought the report back to her addiction support group.

[Michelle]

And I said, this is the evidence. And they were like, I can't believe you're falling for that online stuff. It's such crap.

[Danielle Elliott]

Hearing that the support group, a group of healthcare workers, rejected the idea of ADHD makes me wonder how many people remain undiagnosed. We ask so many questions about overdiagnosis. What about under diagnosis? Particularly among groups who stand to benefit from understanding correlations between things like addiction and adhd. Michelle's support group twice rejected the possibility that she has adhd, and then she rejected them. She dropped out of the group. She took the assessment results to a psychiatrist.

[Michelle]

And then the psychiatrist I ended up seeing was like, and no one has told you you have adhd? And I was like, I know, right?

[Danielle Elliott]

Isn't that weird? The psychiatrist diagnosed Michelle, and things started to change. For years, she said she'd been trying to stay above water, running from fire to fire. She joked that she had been diagnosed with bad in elementary school. And things progressed accordingly because by the.

[Michelle]

Time middle school and high school came, I had complete disinterest in school. And that's not normally the language I.

[Danielle Elliott]

Use for it, but what's the language you normally use?

[Michelle]

The fuck its. I had the fuck it's. I just didn't want to do any work. I wanted to hang out, you know, smoke pot at the bathroom, smoke cigarette. We could smoke in a school and cigarettes and, you know, just have fun and socialize, but I didn't want to do any of the work.

[Danielle Elliott]

Michelle did enough work to finish college and nursing school. She got married. She got divorced. She got sober at 45 and was diagnosed with ADHD at 50. Two years later, she can see the difference the diagnosis and treatment have made in her life.

[Michelle]

I'm not running crisis to crisis anymore, you know, and I don't know if that was more my alcoholism and certainly the adhd, because even after I got sober, I still had crisis, like, often. But I'm not angry anymore. I'm not resentful anymore. I mean, I've come kind of a long way in two years.

[Danielle Elliott]

Michelle still occasionally grieves for what she called lost potential, for what could have been had she or her parents or teachers or others known of her ADHD earlier. But she said she generally feels good about where she's at. It strikes me that the impact of Michelle's understanding extends beyond her personal growth. Michelle now works in community health care. She said she sees many patients who have been incarcerated or have been struggling with substances for years, and many of them exhibit signs of undiagnosed adhd. She talks to them about it, and many say they've never known certain behaviors are at all linked to adhd. She told me she has these conversations many times each week and that it's helpful for them to know they are not alone. Michelle is treating people in communities where access to ADHD treatment is often lacking. I've tried to find community organizations or public health officials who are focusing on ADHD in underserved populations, particularly women, but have so far failed to find any. Michelle is the closest I've found to someone who is working with at risk populations who stand to benefit from ADHD treatment. I wonder how much the diagnosis rates would rise if more people in underserved communities could access mental health care. I went to this camp hoping to speak with recently diagnosed women. I wasn't sure what I hoped to learn. I confirmed that many deficiencies in care still exist for women with ADHD in all sorts of circumstances. Regardless of where they live or what they look like, their care depended largely on their provider. Throughout the week, I met women coming to terms with their needs and demanding better care. And I think this collective demand is the biggest reason diagnosis is on the rise. Women are demanding more from our healthcare system, and even when the system provides, they're seeking out knowledge and information and help from each other. Even then, it's not like everything is suddenly okay. On my last day at camp, I sat in on the parents morning session. I noticed Tamsin standing at the Back of the room with her shoes off, pressing her feet into the ground. She looked exhausted. Afterwards, I asked her how she was feeling. She said, listening to people talk about how they've turned their lives around, how they're now eating well and exercising and sleeping, it was all getting a bit overwhelming.

[Tamsin]

The very thing they're trying to get me to stop, which is those. That negative thoughts just seem to be even worse because I'm like, oh, you know, if I'd have known sooner or if I was different or if I was better, but at the same time I'm trying not to do it. And then there was another thing like, oh, when you do exercise, make sure it's different exercises and have variety and, like, try different things. Oh, but make sure you do this consistently and have structure and scaffolding. And it's like, my brain's just like, ah, I can't be bothered. Maybe I just won't do any of it. And then I'm like, oh, but that's ADHD as well. So I'm just feeling a little bit nervous about being able to be better. And I think I'm a bit nervous as well about. Because my husband's here. Yeah, like, getting home and him being like, you know the story we heard the first day of, oh, now you know all this. Now you can pick your clothes up off the floor and it's like, no, that's not how it works.

[Danielle Elliott]

That's not how it works at all.

[Tamsin]

Try not to beat myself up too much. Like, that's the best I can hope for. Like, I'm not going to go home and clean my whole house. Well, I might, but, you know, I'm not going to, like, do it forever. Like, I'm still going to be me. I'm still going to be a little bit crap at everything, but maybe I just won't be so hard on myself about it. Yeah, Is that where you are as well?

[Danielle Elliott]

That's the way I felt for at least the first few months of, of knowing I have adhd. People say a problem with ADHD is perfectionism. Well, when you start to hear that there are ways to tame your adhd, it's very easy to try to perfectly tame your adhd. And then that in turn adds to the overwhelm. Tamson seemed to be coming to this realization at the camp also.

[Tamsin]

It's like, as much as I don't want to do anything to kind of make myself better, at the same time I'm like, I'm doing loads and I've got a label and a diagnosis, but everyone else is like, everyone else really annoys me. And I don't think that's because of my adhd. I think other people are annoying. They just haven't got a label, you know, so it's like, why do, why do I have to take the rap for everything? Like, just because there's a smaller percentage of people with ADHD in the world doesn't mean we're the only ones that are like messing up and being annoying.

[Danielle Elliott]

She seemed excited to be piecing this all together. Excited and not entirely sure what to do with these thoughts.

[Tamsin]

We're often told that like, the good part about ADHD is like the creativity and the out the box thinking and all the good stuff that we can do and the energy and the reflection and stuff. So, you know, if we're that good, why can't we be more supported? Like, why aren't we given more of a space to like go all about on the floor if we want to, you know? Yeah, just like metaphorically, yeah.

[Danielle Elliott]

Tamsyn was just two weeks into knowing about her ADHD when we spoke. Already she was feeling things sari Soldan felt 30 years ago.

[Tamsin]

But I think I have some anger already which just kind of plays into it. Just like being a woman in the world already, I'm always already a bit annoyed about the way women are treated. So now being a woman and having adhd, it's like this double whammy of like being annoyed about the way the world is. Right.

[Danielle Elliott]

Tamsyn, Elaine, Michelle and about a dozen other women helped me understand the impact of the rise in diagnosis and the importance of treatment. They were all at the camp for their children, but left with a significant level of self understanding. Even with this opportunity, this ADHD retreat of sorts, they're struggling with care. What does that mean for everybody else? Thinking about the ongoing deficiencies in care and how many women may never have the opportunity to connect with others. The way I witnessed women connecting at the camp, it's a bit depressing. There's one more conversation I want to share. It left me thinking less about care and more about the overall impact of the rise in diagnosis, specifically the multi generational impact.

[Nancy]

So I'm Nancy and I've come, come to this school with my granddaughters and my daughter.

[Danielle Elliott]

I met Nancy's daughter one morning and she told me her mom was back at the hotel. Then she said her mom also has ADHD and of course I asked if I could talk to her. We sat on a bench next to a Creek. Nancy is 74 years old. She described several classic elements of a life with undiagnosed adhd. She did well in school. She became a people pleaser. She went into nursing. She started drinking too much. She's 17 years sober now. Overall, she said she has had a.

[Nancy]

Wonderful life, but everything is hard. My struggle made me feel not good enough. I kept thinking, why do I worry about people loving me when I have no evidence of people not loving me? It was just really, really hard, hard, harder than it probably needed to be had I had a clue what was going on.

[Danielle Elliott]

In her 50s, a doctor suggested she might have ADHD, but said he couldn't tell because she also had anxiety. When she retired and the feelings persisted, she was diagnosed. She tried several treatments. Nothing seemed to help. Then a few years ago, her granddaughter was diagnosed. Then her other granddaughters, then her daughter Colleen. Nancy had never told Colleen about her ADHD diagnosis. Now she did. And as Colleen started working through appropriate treatments for herself and her girls, Nancy got curious.

[Nancy]

So right now, I'm on the quest for a new psychiatrist and an ADHD coach.

[Danielle Elliott]

Throughout our conversation, she vacillated between regret and a certain wisdom that comes with age.

[Nancy]

I was born in 49, and it wasn't a diagnosis then. And some days I get really angry that I was born too soon, that they didn't have the diagnosis. And I can get really angry about that and really sad and like, I feel like my life has been so much more difficult than it had to be. But then I think, you know, I was born. They had found the treatment for polio, they found the treatment for tuberculosis and all the vaccines. So I have to temper it that I did benefit from a lot of medical successes and that's the way life is. They didn't know about this. Thank goodness that people were working on it. Thank goodness it moved from just little boys problem to people's problems and that women are being seen. Like, do I wish science had worked on it a little quicker and harder? Sure. Am I upset about the gender discrimination in the diagnosis? I'm really angry about that. So just recently I've had a lot of anger and frustration in not finding the, what I think is the appropriate caregivers for me. I'm just happy that my daughter's getting it. I'm super happy that my granddaughters are getting it. You know, that's just the way of the world. So, you know, there's been progress made.

[Danielle Elliott]

There's been progress made. Speaking to Nancy helped me see more clearly the importance of that progress. When Women are diagnosed and treated appropriately, entire families benefit. This might be the greatest impact of the rise in diagnosis, breaking generational cycles, or it has the potential to be. That'll depend on whether an effort is made to correct deficiencies in care and to expand access to appropriate treatment. After speaking with Nancy, it was time to leave this idyllic setting to pack up my rental car and head back to New York and all the pressures of modern life. I walked out to the beach and watched the sunset over Lake Michigan. I thought for a moment about what it would be like to live in a world more friendly to adhd. It was only later, months later, that I realized one more thing I learned at the camp. Every woman I spoke to was diagnosed in her 40s or 50s. I attributed this to deficiencies in care and a long history of gatekeepers rejecting the differences between the ways women and men experience adhd. Then, as I started to listen to the recordings from camp, I came across a story Sue Hollowell told on the first day, and something clicked. Sue shared it as the parents were gathering in a big conference room for the first time. Here's the story.

[Ned Hallowell]

Not only does Ned have adhd, all three children have ADHD of various types. So we've seen lots of struggles over the years of different kinds. And I used to say our dog had ADHD as well, and I probably have adhd. I think I have ADHD, too. Mine was very masked, and it became more pronounced, actually, when I went through perimenopause and menopause, which is actually very common for a lot of women who have been able to maintain their symptoms.

[Danielle Elliott]

She told the parents how she arrived at her late diagnosis of adhd.

[Tamsin]

I was going through perimenopause.

[Ned Hallowell]

I knew I was having trouble in ways with organization and paying attention that I really had, and particularly dealing with multiple tasks at once.

[Danielle Elliott]

Sue said her youngest son was still in high school at the time. Every morning, she'd lay out his ADHD medications and her vitamins.

[Ned Hallowell]

One morning, I wasn't paying attention after his medicine, and I took it, and I panicked. And I called Ned and I said, ned, what's gonna happen to me?

[Danielle Elliott]

He's so weird.

[Elaine]

Nothing.

[Ned Hallowell]

Well, I had the best day of my life. It was remarkable. And then I decided I should, you know, get tested. I did.

[Danielle Elliott]

And sure enough, but sure enough, she has adhd, and she never knew it, despite being married to one of the world's leading experts on adhd, raising children who have it, and counseling couples who are dealing with it. Of the recently diagnosed women I talked to at the camp. Most didn't have access to information about ADHD or awareness of it. Some were misdiagnosed. I thought these were the reasons why they weren't diagnosed with adhd until their 40s or 50s. Sue had access all along. Her symptoms were there all along, but they didn't impair her so she didn't consider it. Then she hit perimenopause and her symptoms became impairing. Like sue, thousands of women report developing or at least noticing symptoms of ADHD when they hit perimenopause and menopause. Did they have ADHD all along? Or is it possible that perimenopause and menopause can tip women from the ADHD traitor end of the spectrum to the disordered end of the spectrum? If so, is it possible that this, along with increased acceptance and awareness of how ADHD presents in women, could account for some of the rapid rise in diagnosis we've seen over the last few years? That's next time on Climbing the Walls Climbing the Walls was written and reported by me, Danielle Elliott. It was edited by Neil Drumming, Sound design by Cody Nelson. Brianna Berry was our production director, Ash Beecher was our supervising producer and Diana White was our associate producer. Fact Checking by Mary Mathis Research by Karen Wainabe Our music was composed by Kwame Brant Pierce, with additional music provided by Blue Dot Sessions, and our mixing was done by Justin D. Wright. This series was brought to you by Understood.org, a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. From Understood.org our executive directors are Laura Key, Scott Koshier, and Seth Melnick. A very special thanks to Ray Jacobson, Julie Zeitz, Jordan Davidson, Sarah Greenberg, and Kathleen Nadeau. If you want to help Understood continue this work, consider making a donation at Understood.org/give.