This week, I’m talking with the founder of the Inattentive ADHD Coalition and author of Living with Inattentive ADHD: Climbing the Circular Staircase of Attention Deficit Hyperactivity Disorder, Cynthia Hammer. In our conversation today, we discuss Cynthia’s journey with a late diagnosis of inattentive ADHD and critical lessons that she’s learned along the way. We also explore the challenges of recognizing ADHD, dispel common myths, and emphasize the importance of early diagnosis. From overcoming critical self-talk to self-publishing her memoir, Cynthia shares valuable insights on living with ADHD and creating a brighter future for those of us in neurodivergent community.
Be sure to check out the Inattentive ADHD Coalition
and Cynthia's book: Living with Inattentive ADHD: Climbing the Circular Staircase of Attention Deficit Hyperactivity Disorder
William Curb: To get started here, could you give me a little quick introduction about yourself and let me know what we're here to discuss?
Cynthia Hammer: My name is Cynthia Hammer. I guess I should disclose my age, but I'm almost 80. In one week, I'll turn 80. And when I was 49 years old, I got diagnosed with inattentive ADHD. Shortly after that, I started a nonprofit called ADD Resources because when I got diagnosed, I thought I was the only adult in the US who knew they had ADHD. That turned out not to be true. There were a few others, but I was near the beginning. So I wanted to help other adults learn about their ADHD. That's why I started that nonprofit.
And I ran it for 15 years. But during COVID, I decided to write a book. And in doing that, I wanted to get back and learn about ADHD. And that's when I found out that the children with the inattentive type were still being underdiagnosed. And the adults with the inattentive type were being misdiagnosed with depression or anxiety. And according to Dr. Dotson, they often delayed their diagnosis by six years by pursuing the depression or anxiety.
So beyond not getting diagnosed as children, even when they pursue help as an adult, they're still not getting properly diagnosed. So in March of 2021, I decided to start a new nonprofit and it's called the Inattentive ADHD Coalition. And our mission was that children with inattentive ADHD would be diagnosed by age eight and adults would be readily and correctly diagnosed when they sought help. So we existed for maybe two and a half years now without a lot of direction. We had this mission, but the way I was handling it is just put out information as often as possible about inattentive ADHD.
Try to contact school counselors, school social workers, put out information about inattentive ADHD. And we recently had someone join our board who is very knowledgeable and very helpful. We're working through a book called Traction. And instead of having such a broad focus, we're narrowing it down and we're really excited about our new focus. We might even have to change our name, but our new focus is all children should be screened for ADHD before they end the second grade. And screening should be recommended for the parents. Anytime a child is diagnosed with ADHD, those two things are our new focus.
It gives me chills to think about that that would happen. But I'm sure you know the rationale that we're finding out first, which we always knew that ADHD is pretty common. It's the most common neurobiological order of childhood. And the second thing we've learned from Dr. Barkley's research and others is that we're at risk for a lot of problems in our lives if we're undiagnosed. Earlier deaths, alcoholism, drug abuse, low income, poor academic achievement. It's just a lot of reasons that this condition needs to be discovered in children as early as possible.
William Curb: Yeah, I can see there's a lot there. And this is just making me think of like, yeah, I remember taking like hearing tests when I was in school and having something similar to help identify conditions, which go largely unrecognized because the inattentive side of ADHD isn't the
disruptive side that's causing problems for people, typically. It's causing problems for yourself, but fewer problems for authority figures.
Cynthia Hammer: Right. And what Dr. Orrin Mason said is that what we know that children with ADHD on average are diagnosed by age seven, but they're only talking about the ones that get diagnosed. And those are the hyperactive ones. And what Dr. Orrin Mason says is the teachers, when the school year starts, they're kind of picking out the children that are having problems. And the quiet child that's sitting there daydreaming is not picked up. So he was advising those teachers to be on the alert. And what our organization is trying to do is gather together the kind of behaviors that people should be looking for. Because our belief is it's not that you can't see it. It's that we haven't been looking for it and that if you know what to look for, you're going to see it.
William Curb: Yeah. And correct me if I'm wrong, but I'm remembering that inattentive is also a more common condition in girls who have also been overlooked for ADHD symptoms for a long time as well.
Cynthia Hammer: I think it's true, but I don't know it's true. We don't have research to say that. I've read some places they think there are boys and men that have the inattentive type. As much as the women, I know there are men with inattentive type. I got to interview 24 of them, but I know there are women with the combined type. And that's what I interviewed 25 women with combined type because I wondered how do they differ from the women with the inattentive type?
The first thing that really surprised me is that they went on undiagnosed too. And even though they had hyperactivity because of cultural norms, they suppressed it. They said, one girl told me she bit the inside of her cheek to keep herself being still. Some others said I learned to get up and sharpen the pencil when I was restless or to ask to go to the bathroom. They learned to moderate their physical hyperactivity so that it was more socially acceptable. But our feeling now is the only children that are really getting diagnosed is the pool of children who are physically hyperactive and disruptive in the classroom. And beyond that, you're very lucky if you got diagnosed.
William Curb: Absolutely, because if you're not causing problems, they're not looking to do stuff. Having gone through talking with my children's schools about IEPs and stuff, they're like, if they're not disruptive, we're not going to be doing much of anything for you.
Cynthia Hammer: So you're saying they don't really care about the child being successful? William Curb: Not particularly. That has not been my experience at all.
Cynthia Hammer: Well, the two discouraging parts we've heard separate from what you're saying is that school districts are reluctant to identify children with possible ADHD, because it's going to cost them more money. And so we first thought, well, let's educate teachers so they
can recognize it more. But there's this pressure on them not to recognize it. So then we thought, we need to work with the doctors, get them to screen the children. And someone told us recently that doctors don't want to do it either because they lack the knowledge.
William Curb: Yeah
Cynthia Hammer: And that's a problem back to medical schools where they don't have this in their curriculum or psychiatry schools where we're told they only have one hour on ADHD when it's such a common neurodivergent condition.
William Curb: Yeah, there's an amazing lack of information too that is associated with the diagnosis. One of the more interesting pieces I found when doing research on ADHD was looking a lot into executive dysfunction and realizing that that isn't included anywhere in ADHD diagnosis. And yet it is one of the things that is most commonly referred to as a problem because when you look at the symptoms of executive dysfunction, you look at ADHD, it's like a circle in a Venn diagram.
Cynthia Hammer: And Dr. Barkley, that is what he's saying now is that we're starting to understand that ADHD is really the problems with executive function. And they thought that the school could relate to that more. They would understand that the child needs to get skills in their executive function to be better in school. And the other party mentioned was the emotional dysregulation that is common in children with ADHD.
William Curb: Yeah.
Cynthia Hammer: The knowledge is evolving, but the DSM isn't keeping up.
William Curb: Now, I understand they want to be very conservative in how they're changing things because
Cynthia Hammer: You don't want to change back again.
William Curb: Unless we have really definitive evidence of a certain thing, changing the DSM just leads to confusion because we still have so many people that use the term ADD, even though mid-80s is when that left the DSM.
Cynthia Hammer: Well, when I got diagnosed, it was called ADD. And I have to go through my script sometime to change it all to ADHD, even though I didn't say that, I said ADD just because that's how my brain learned it, I guess.
William Curb: It was fun. I was doing another thing and I found the reference to hyperkinesthesia, which was previous iteration of ADD.
Cynthia Hammer: Well, then there was a minimal brain dysfunction before that
William Curb: which is often interesting because people are like, oh, ADHD was made up at a certain point. And you're like, no, it was just called something different.
Cynthia Hammer: First, I wanted to go back and say something that I was surprised when you were saying people misunderstand ADHD.
William Curb: Okay
Cynthia Hammer: So the women that I interviewed, a lot of them only discovered their ADHD recently. And although we are kind of critical of TikTok and everyone being a Charleston trying to market something, at least a third of the women I interviewed learned about their ADHD or got educated about it from TikTok and Instagram. And the surprising thing, some of them said they had heard of ADHD, but their concept only was the hyperactive child. And by only having that concept, it prevented them from ever seeking a diagnosis. So that's another downside of having it so widely misunderstood is it's preventing people from being able to recognize that this might be a condition I have.
William Curb: Absolutely. I mean, and you look at where do people want people to learn about ADHD, if not the social media platforms. They're not going to be reading textbooks and things about ADHD.
Cynthia Hammer: Yes
William Curb: And pop culture is going to give them the worst idea of what it is.
Cynthia Hammer: That's what I'm concluding is that you need to have it on TikTok or Instagram. Or if you're doing a podcast, what I've been told is some people listen to it at double speed. That's the only way they can listen to podcasts. Have you heard that?
William Curb: I don't listen to most of my stuff at double speed, but I do listen to it at like one and a half to 1.25 a lot of the time. Yeah. I'll like start something up. I'm like, wow, what is up with their intro music? Oh, I'm listening to it this way faster than it's supposed to be.
Cynthia Hammer: I see. Yeah.
William Curb: That and the other cue I get that I'm listening to things too fast is when people laugh does not translate well to faster speeds.
Cynthia Hammer: Makes it higher or something.
William Curb: Makes it higher like little chip monkey laughs. And you're like, oh, I remember I sent a friend a video that had been sped up. And then they're like, man, I can't watch that going that fast. And I'm like, Oh, I didn't realize.
Cynthia Hammer: So I want to give a shout out that Dr. Hallowell has a lot of TikTok short things. I made a friend who is a psychiatrist trained in Stanford. He has both autism and ADHD. And he is starting on TikTok. He has his first one up. And his name is Dr. Choi M.D.
William Curb: Awesome. I'll have to look it up.
Cynthia Hammer: So I want to encourage people to find the reliable sources on TikTok. I think it can be helpful. And it's probably a good thing for people with ADHD, but be careful who you're listening to.
William Curb: Yeah, it's absolutely imperative. Did question any information we're getting because some of it's really not reliable. I was surprised at the amount of good information I've seen on TikTok. I've certainly seen a fair share of bad information, but a lot of being like, Hey, this is what executive dysfunction is. These are silly things that people with ADHD do. Then that's fine to be like, Okay, yeah, I do weird sway walk while I'm walking through places rather than walking straight.
Cynthia Hammer: I see yeah. I saw a meme the other day that I just want to save. And it says, I'm a master in partial arts.
William Curb: Yeah, we should also talk a little bit about your book that's coming out.
Cynthia Hammer: Yeah, it came out on August 29. And I was told three different times it was coming out. It was coming out in March. No, it's coming out in May. No, came out in August. And so I was frustrated, telling people it was coming out because to me, being honest is really important. So I said it was embarrassing for me that it wasn't coming out when it should. But the name of the book is living with inattentive ADHD, climbing the circular staircase of attention deficit hyperactivity disorder. It's a memoir about my life.
But it also is a self help book because I improve my life both before and after I knew my diagnosis. But I didn't have coaching. I didn't have therapy. It was things I learned and read and did for myself. And when Dr. Farone read the manuscript, he suggested I include information. about ADHD at the end of each chapter. So I embellished it with the myths about ADHD and providing the corrective information for a lot of the myths that are out there.
William Curb: What were some of the myths that you found really interesting there?
Cynthia Hammer: Some of the myths are bad parenting. Medication is dangerous or it should be a last resort. Only hyperactive little white boys get diagnosed. You can't be smart if you have ADHD. You can't have a college degree if you have ADHD.
William Curb: Yeah, there's some definitely things where people like, yeah, you're successful. You can't have ADHD. And it's like, what?
Cynthia Hammer: Well, even people say when they went to get diagnosed, if you said I'm in graduate school, they right away said you can't have ADHD. And someone else I interviewed, Alan Brown, he said when he went to the doctor, the doctor said ADHD doesn't exist, ADD doesn't exist. And he told Alan to go do work on crossword puzzles.
William Curb: Oh, well that's
Cynthia Hammer: That's helpful.
William Curb: Yeah. Oh yeah, crossword. That's, thanks I'm cured. I was looking at the high capacity programs for schools now and what they were describing as who excels best. And I was just like, there are so many neurodivergent traits in this list of what a high capacity student is. And high capacity is like the new gifted program.
Cynthia Hammer: Yeah, I was gonna say it's a new term for the old thing.
William Curb: And it's just something where you go, oh, there are a lot of gifted students who have ADHD, but they often get left behind in normal classrooms because they're not being challenged enough. And this isn't to say that everyone with ADHD is automatically very smart. It's just they have, I find people with ADHD tend to, when they are put in a learning environment where they are stimulated, they do very well.
Cynthia Hammer: What I agree with is what Dr. Barkley said is that the intelligence is just on a normal curve. And the ADHD is a separate thing. The range of intelligence is like it is for everyone.
William Curb: Yeah
Cynthia Hammer: And the ADHD is a separate layer. And we know only about 20% of adults from research have been diagnosed with ADHD. So there's a lot of people out there who have ADHD, they might be in the prisons that have ADHD undiagnosed. So what I'm theorizing is that the 20% are the ones who were more academically gifted or more intelligent because they're the ones who figured it out.
William Curb: Yeah
Cynthia Hammer: And so we have a skewed sample when we think people with ADD are really intelligent, because we're looking at the ones that got diagnosed.
William Curb: The only point I was trying to make is that when you put people with ADHD in the right environment, they excel.
Cynthia Hammer: Yes.
William Curb: Regardless, just because when they're in the wrong environment, it's the opposite effect where everything is harder and you do have a lot of bad outcomes.
Cynthia Hammer: Right, well, if you get into areas where you have choices and you can pursue your interests, then you're going to shine. And probably the gifted program allows for more of that. And that's what I think the neurodivergent movement is about is creating environments that are more inclusive. So children can demonstrate their knowledge in different ways and show that they are smart in different ways than the cookie cutter ways that we've been expected to do in the past.
William Curb: Yeah, it's certainly something where, having that diagnosis is very helpful to tell us what we should be doing moving forward, what kind of options we should be looking for.
Cynthia Hammer: Right, that's back to why we want children to be diagnosed early. So many people, these 25 women I interviewed, I went and asked them the 18 symptoms of ADHD and a lot of them had all the symptoms, most of their life. Then they got diagnosed and I asked them, some of them were diagnosed for a couple of years, some of them for many years. I asked them, how many of these symptoms do you have now? Some of them had all the same symptoms. There were just a few that were less. But the biggest difference for them is they now knew what they were dealing with and they were less judgmental. That's what made a big difference for a lot of them.
William Curb: Well, the funny thing I always come back to is when people are like, we don't want to give someone a label and I'm like, they're going to have a label. It's just whether or not it's something they can do, anything about.
Cynthia Hammer: Yeah, I read that online. That's another thing I often talk about is the labels your child will get is lazy, inconsiderate, procrastinator, not concerned, not living up to their potential. Are those better labels than saying she has a different brainwiring that we're able to help in new ways because we know?
William Curb: Because otherwise you're labeled with just character flaws, which sure you could work on, but that's all about just trying harder, which is in my experience, a really poor method of getting things done, just trying harder does not typically get me better results.
Cynthia Hammer: I wondered if I could talk a little bit about the journey I took in writing the book, because maybe you have people that are interested in writing something. And I have to say it's not easy.
William Curb: Yeah.
Cynthia Hammer: After I wrote the manuscript and decided I wanted to try to get it published, I submitted it to 50 places, trying to keep track. And of all those, I think I heard back from five and
they were all rejections. And during COVID, and maybe it continues to be that way, but it became much easier to apply to places because you could do it all online through your email. Before that, you'd have to Xerox everything. It's a proposal. It might be like 20 pages long, talking about the book and the market potential, all this stuff. I was just about ready to give up and self-publish when someone called me. But once you give it to a publisher, and I didn't read the contract very well, of the price on the book, I get about 10%. That's what the author gets.
And for the book I wrote, all the profits are going to the nonprofit organization. Between signing the contract and the book actually published, it was almost two years. I'm just letting that out there. And if someone were to do it again, I would say if you have your own market, if you know you're gonna have a readership, I don't know if you achieve a lot by having a publisher. You lose a lot of the revenue by having the publisher.
William Curb: Yeah, publishers are great for some things, but not for others. From what I understand, they can open up some doors that self-publishing wouldn't open up, but if you're not going on a book tour or anything, that's also not going to be something you need.
Cynthia Hammer: I don't know. Maybe different publishers do different things, and I think it depends on how much the publisher, like now there's a woman online. If she has a huge, huge following, the publisher comes to them. They want to publish a book of someone who has a huge following because they know they have a ready market, and they will promote that person. But the other way around, most publishers, you're still on your own to promote your book.
William Curb: Oh wow
Cynthia Hammer: You can't count on them to be doing much for me. The publisher that I work with, they send out a blast email to, or like, 2,000 places, you know, a press release. Well, maybe they paid for those resources where they send the press release. From them, I have gotten exactly two things to do. The rest are things I've found on my own, and I'll be giving an author presentation.
What's curious for me now, interrupting myself, but the places that I'm speaking, like I'm gonna be on a live event with Facebook tomorrow, the person responded the press release from the publisher because she herself has inattentive ADHD. I'm going to be giving an author presentation at the UW Bookstore, October 23rd, and that person has inattentive ADHD. You have ADHD. I think we need to create a sister in brotherhood where we're helping each other because there's a need to get good information out about ADHD. And that's part of what your commitment is.
William Curb: Yeah, we got together through email from each other because we previously talked, and it was very easy to be like, oh yeah, let's do this. And yeah, if I ever wanted to publish anything for myself, I already have a great platform for promoting it.
Cynthia Hammer: Right, yeah. And so I think there are a lot of authors that self-publish now. I don't think it makes a difference. They say, well, I guess where it made a difference for me is I do have reviews from my book from well-known people in the ADHD field. And I know for Dr. Hallowell, he would never write a book review for someone who was not published by a publisher. And I don't think I could have gotten some of the people to read my book if I didn't say it was by a publisher. But I don't know now that it's in the marketplace, if that makes much difference. Do you care that Dr. Hallowell or Dr. Farone or Dr. Ramsey or Kathleen Nadeau wrote blurbs for my book?
William Curb: Probably not. When I do look at a number of resources online for ADHD, there is, as we were saying earlier, there is a wealth of misinformation out there. So being able to be, hey, there is this credibility associated with having those names there as well though.
Cynthia Hammer: Yes, yeah, that's true. But people have to recognize the names to start with. William Curb: Yeah, that's true. Like I'm like, oh, I recognize some of those names, but not all.
Cynthia Hammer: It's been fun. We like learning new things. And that was something new to learn. And the other thing that's been fun for me is when I ran the nonprofit, the first one, ADD Resources, everything was in person. We had in-person support groups. We were doing a newsletter that we mailed to people. We were having a lending library of audio tapes. And if you were a member, we would mail you audio tapes that you'd mail back to us. And when you think about people with ADD, it was surprising that they mailed the things back.
We didn't lose our possessions. And then we were having national conferences where people would come and speak. Now, with this new organization, everything is online. I had to learn all of this new stuff. And I sometimes have to rely on younger people to tell me how it all works.
William Curb: Yeah, but I mean, it's also that much more accessible for people now too.
Cynthia Hammer: Oh, I think, yeah, you reach a broader audience. It feels like there's a lot more competition though. I mean, back when we were doing it, there weren't too many places to get information about ADHD. So you kind of had a corner on the market in a way.
William Curb: Yeah.
Cynthia Hammer: And now I think you're, it takes a while. That's what I'm should saying. It takes a while, more than two years.
William Curb: All right. Well, I think we're coming up on time here. Is there anything you want to leave the audience with? And I will be sure to also include links to your book and stuff in the show notes as well.
Cynthia Hammer: Well, what I think are the two key things if you're gotten diagnosed with ADHD is first, to focus on stopping your critical self-talk, to become aware of it and to stop it. And then eventually to work on having positive self-talk. That is the goal. And the other thing is I think people with ADHD, once we realize areas where we're struggling, we attempt to fix too many things at once. And that's what I would encourage people is to take one thing at a time. That's why I talk about the circular staircase. Because you should take one step and improve and coalesce that improvement and then take the next step. And slowly you'll rise to the top of the staircase.
William Curb: I definitely know the tried to do too much at once.
Cynthia Hammer: Uh-huh.
William Curb: Yeah, it's some excellent advice for getting through anything really, but especially with ADHD.
Cynthia Hammer: And I guess the other thing that people don't realize is that it's really a journey. And don't think it's going to just be a year. It's usually three to five years before you actually feel like you're on top and that your life is going the way you want it to.
William Curb: Mm-hmm. And even then, you're going to still have speed bumps. Cynthia Hammer: Yes.
William Curb: All right. Well, thank you so much for coming on the show. Really appreciate you taking the time.
Cynthia Hammer: Yeah.
This Episode's Top Tips
Avoid trying to fix everything at once. Instead, prioritize one thing at a time for improvement. ADHD management is a journey, and gradual progress is key.
Social media platforms like TikTok and Instagram can be valuable sources of information and support for ADHD. However, be discerning in choosing reliable sources to avoid misinformation.
Focus on becoming aware of your critical self-talk and work replacing negative thoughts with positive self-talk. Self-compassion is crucial for managing ADHD effectively.