Living with Inattentive ADHD, with Cynthia Hammer | EDB 312
Cynthia Hammer, self-advocate & founder of the Inattentive ADHD Coalition, shares her experiences with the disorder, and how it can differ from other types of ADHD.
Cynthia Hammer is the Founder and Executive Director of the Inattentive ADHD Coalition, and author of the book She earned her Master’s Degree in Social Work in 1972. For many years she was a stay-at-home mom raising three sons while her husband spent long days at work as a general surgeon. She started a non-profit organization in 1993 to help adults with ADHD, and she recently started a different non-profit, the Inattentive ADHd Coalition to create more awareness of Inattentive ADHD.
For more about the Inattentive ADHD Coalition: www.iadhd.org
To learn more about Cynthia’s book: https://a.co/d/h8EpdXI
And check out Cynthia’s articles for Different Brains here
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Note: the following transcription was automatically generated. Some imperfections may exist.
DR HACKIE REITMAN (HR):
Hi, I’m Dr. Hackie Reitman and welcome to another episode of Exploring Different Brains. And today we have with us from all the way from way out west: Cynthia Hammer who is the founder of the Inattentive ADHD Coalition. Cynthia, welcome.
CYNTHIA HAMMER (CH):
Thank you. Glad to be here.
HR:
Thanks for making time in your busy schedule. Please introduce yourself to the audience.
CH:
I guess I’ll have to tell you that I’m in a ton of ADHD. I got diagnosed with it 30 years ago, in 1992. And when I got diagnosed, it was by my son’s developmental pediatrician. I thought I was the only adult in the US that knew they had ADHD. So I was that far back. But it was the first year there was a conference for adults with ADHD. And I went to that in Ann Arbor, Michigan. And that’s where I met Terry Matlin and Dr. Halliwell. And I think they had been diagnosed for two or three years before I had been. A lot of us that were diagnosed back then are still involved, because I think we found our passion, which was helping other people with ADHD. When I returned to Tacoma from the conference, I started a support group for adults with ADHD. It was just, you know, come and talk about your issues. But it wasn’t a successful group that I reconstituted what we were doing, and organized ourselves as a nonprofit called ADD Resources. And this was back like in 1993. And then we started to have monthly meetings with speakers. And that’s when we became more successful. So I ran that for 15 years, and then retired, I trained as a coach, but I wasn’t successful at that. And then during COVID I wrote a book and writing the book, I decided to start another new nonprofit, because I was learning that girls and boys with the type of ADD, I have without the physical hyperactivity, we were still under diagnosed, or we were misdiagnosed when we became adult.
HR:
What’s the name of that book?
CH:
Oh, right here.
HR:
Show it to us. “Living With Inattentive ADHD: climbing the circular staircase and attention deficit hyperactivity disorder”. Great.
CH:
So it’s, it’s it’s a memoir, but it’s a self help book. And when I had my sister read it, she learned things about me and my life that she never know. And I think because I really go into a lot of the areas where I had challenges the things I did wrong. The problems I cause, that it’s a good book, to give your family members if they don’t understand your ADHD or they say you don’t have it, something where — that until when I have readers who say they they They loved the book. It was a page turner. They just felt really understood that that’s why why I wrote the book. The reason I say it’s climbing a staircase because that’s how I think people get better from their diagnosis is learning one new skill at a time. Not trying to learn everything at once but one skill and then you’ll make progress climbing the staircase.
HR:
Cynthia, for those who don’t know, explain what inattentive ADHD is, and how it differs from other forms.
CH:
Okay, well, there’s 18 symptoms for ADHD. And the first nine are this category called inattentive. We tend to make careless mistakes. We have difficulty following instructions. We have difficulty organizing, we dislike anything that requires mental effort, unless it’s something we love. We’re easily distracted from tasks. We’re not listening. We lose our possessions. Were forgetful and we’re distracted by stimuli. I don’t think it’s cut and dry. Because I have I say I have inattentive ADHD, but I still have a few symptoms from the hyperactive impulsive part of the symptom checklist I have risk taking. risk taking is not part of inattentive ADHD, but because of my affect, the way I come across. I relate emotionally to the inattentive type of ADHD. And most people have combined type, which means they have the inattentive and the hyperactive impulsive symptoms. So when I asked someone like Dr. Brown, who has it worse, they said, of course, the combined type because they have more symptoms. But I don’t quite agree with that. Because the people with the inattentive types aren’t getting diagnosed. And they’re masking. They’re trying to hide how they behave. And I think they mask more than the hyperactive type would mask because I think it’d be harder for them to be masking.
HR:
What do you think is the biggest misunderstanding of the general public about ADHD?
CH:
I guess there’s lots of myths. There’s like, probably 15 myths. The one I care the most about which I think is contributes to the people with inattentive not getting diagnosed is that it’s physical hyperactivity. And the other day, I realized I’m really upset that they change the term. We used to call ourselves ADD without the hyperactivity. And then the, the was the wise man or the wise woman to be thought, Oh, we can put it all under the term ADHD. But I don’t think people are thinking of hyperactive brains when they hear the word hyperactivity. So I think there’s just is still a conception and I’ve talked to women who said, it never occurred to me that I could have it because I thought it was someone who was physically hyperactive and distracted and disruptive in class and I wasn’t that way. So I’m upset that that term hyperactivity is still in there to describe it. And we end up with the oxymoron, inattentive ADHD.
HR:
What are the what are the most worthwhile tools? For those of us whose brains are a little bit different and have inattentive ADHD?
CH:
Well, I think the tools are the same that someone with the hyperactivity version would would use were similar in a lot of ways. But in a 10 of wands, there, I would say their thing is probably more challenging and getting motivated to do things because we don’t have as much energy as the hyperactive people. When I talk with the women that have the combined type, I could ask them one question and they could talk for an hour, and then they’d go on to do the rest of their day. If I attempted to talk for an hour straight, it would use up my energy for the day. So I think people with the inattentive type, have to be more planful about how they’re going to use their time.
HR:
To our audience, why early diagnosis is so important of inattentive ADHD?
CH:
Well, it’s important. I think it’s important For all kinds of neurodivergent conditions that were born with this, these conditions, in most instances, they’re congenital. And so I don’t understand why they can’t be noticed earlier. The hyperactive do get noticed early on, I’ve read that they get diagnosed by age seven, the girls don’t get diagnosed till later. And probably the boys with inattentive might not get diagnosed at all. But the reason early diagnose, I don’t even call it early diagnosis. I’m starting to say, if you’re diagnosed after age eight, it’s a late diagnosis. Because I talk to clinicians that do children with ADHD, they’re comfortable diagnosing a child by the time they’re age seven. And that’s what I think our target date should be. We have a huge backlog of people who haven’t gotten diagnosed. They’re adults. So yes, get diagnosed whenever you can. But for the future, we really should be saying this child needs to be diagnosed by age eight.
HR:
Is there a standardized test that has given?
CH:
Well, trying to find out if — the one that’s commonly used is called the Vanderbilt. And it’s available online? It’s very easy to take online. Apparently, all the pediatricians are familiar with it. That’s the one that we would move forward with. We don’t have any research to say that it’s not going to pick up on the inattentive children. So until we know that it’s not a good screen, I think that’s the one that we would suggest get used. And the other thing that I’d say is, even if it’s not perfect, it’s better than what we’re doing while we move in the direction of making it a better and better screen
HR:
will tell us a little bit about adults with ADHD and any possible relationship with Alzheimer’s and dementia.
CH:
Well, there was just — when I first learned about my ADHD and I have memory problems I used to joke I hope I don’t get Alzheimer’s because my memories bad enough. But when I asked my family doctor back then if there was any, any mention that ADHD would be connected with Alzheimer’s, they said no. But just within the last week, there has been an article in the JAMA Journal, which I think is a reputable journal for research. The research was done in Israel with huge numbers of people. And they got to see adults with ADHD who had not been died, had not been on medication, and adults who were on medication. But the surprise is that if adults with ADHD didn’t take medication, they had almost a three fold increase in getting dementia. And then if they had been taking medication, they were the same as the rest of the population. So it was almost like taking medication is preventive prevents you from reduces your risk of getting Alzheimer’s disease. And I’ve been off medicine for several years, I had gone through some neurofeedback training that, in a way helped me but in a way caused me a problem, but I just decided to function without medicine. But yet when I read this journal, and I’m 80 years old and having some memory problems, I’m emailing my doctor to ask if I can go back on medication for ADHD. So I thought the research was that credible?
HR:
What are the most popular medicines for ADHD?
CH:
Well, I guess there’s two versions, methylphenidate and amphetamines. And they my understanding, there are no those are the two main medicines and that they’re available in maybe 30 or more different delivery systems. Whether it’s short acting or long acting take the night before a patch. I don’t sprinkles, I don’t know all the different ways. But generally, if you try one and work up to the dose, it’s helping you the most that you still should try the other family of medications because a When I talk to these women with combined type, what surprised me is I went over the 18 symptoms that are in the DSM for ADHD. And some of the women was that all before my treatment, I had all of those. And now I asked, like, now that you have been on your medicine for three years, what, and they’d say, Oh, I have almost all of them, there were just a few, maybe I got a little bit better on. And they hadn’t improved that much. At least it didn’t sound like me, they improved that much. But they were content. And the biggest difference was that they were more forgiving of themselves. You know, there was less shame base, less negative self talk, just because they understood themselves. And so, some of them were taking Wellbutrin, which was not the first line med for ADHD some were on something else, because their doctor worried about their heart. But from what I hear, you should the medicine for ADHD if it causes your heart to beat faster than you should get your cardiologist to help you with that. But I’m not a doctor. So I’m only parroting what I’ve heard from other ADHD professionals.
HR:
So if someone’s watching this near an adult, they say, you know, maybe I have ADHD? What kind of doctor should they go to? Who should they go see?
CH:
There’s family physicians that can diagnose ADHD and adults, any doctor is licensed to diagnose. But I think the most important thing is to find someone who has been diagnosing, and it has been dying dosing adults, because there’s still so many myths out there and little training in the physicians to know about it. And if you went to see a doctor, and they said, Oh, you couldn’t you couldn’t graduate from graduate school, if you had ADHD, or, you know, you couldn’t be holding down an executive job. If you have, they just have this myth that you’re you’re so incompetent, you’re so challenged by lives that you couldn’t be successful, then they might tell you right away, that you’re not or if you’ve had a history of taking drugs, illegally, they were just feel judgmentally that you are there to get more drugs, although it’s commonly felt now that it’s helpful to get on your ADHD medications and for the doctor to monitor how much you’re using it because that’s going to help you with your substance abuse treatment.
HR:
Are there resources available on your website?
CH:
Our website has a lot of information about inattentive ADHD, we’re the only website solely about inattentive. And my I started out with this because although the DSM talks about the two types of ADHD, when people go on to talk about it after that, they just focus on the hyperactive type. We’re like the ignored little sister. You know, they’re always talking. If you read about our gifts, gifts of ADHD, they’ll always mention high energy. And that right away discounts all those of us with the inattentive type of ADHD. So even people that are educating others about ADHD, they’re leaving out discussing the inattentive type in a helpful way.
HR:
What percentage of adults would you say have ADHD?
CH:
Well, they say about 10% of children have it. And in the past, they believed that most adults outgrew it because as I said, the hyperactivity went away. Now, they’re saying they’re finding that up to 90% continue to have ADHD.
HR:
Gotcha.
CH:
So its a lifelong condition,
HR:
But that would represent what one in 20 adults, any ballpark figures?
CH:
Yeah, it sounds like it sounds like it. And at this point, it’s often taught that only 20% of adults with ADHD have been diagnosed. Like there’s 80% who haven’t been. And the thing that kind of bothers me a little bit is Other times people are saying people with ADHD are super intelligent. You know, they’re super creative. And yet from Dr. Barkley, he says that the curve of ADHD is different from the curve for your intelligence. So the how the intelligence is, is in the usual population, that same curve exists among people with ADHD. So my feeling is when they, when those of us that have been diagnosed, we’re in the 20%, I think we’re more likely to be the more intelligent ones. Because we’re saying, we’re what we’re so intelligent, why are we messing up so much? We’re the ones that are questioning, if you weren’t intelligent, you would accept those reasons, you’d say, oh, yeah, I just don’t have the mental capacity to be thinking about these things. I don’t you know, but if you’re intelligent, it sets you off to say, what is going on here. And I talked to women who’ve been in therapy for years trying to figure out what’s the matter with themselves. And it all comes, the light bulb gets turned when they get diagnosed.
HR:
Is memory — difficulties with memory, a big feature in adult ADHD?
CH:
It’s a big feature for me. And I think that the 18 symptoms of ADHD include some memory problems, but some people don’t get that symptom, and other people do. So you only need to have five out of those 18 symptoms that are impacting you in two areas of your life, then someone should be feel comfortable diagnosing you with ADHD.
HR:
Let’s repeat where our audience can find those 18 symptoms.
CH:
Well, I think if you put in “adult ADHD screener”, though there’s the letters to it, or AR something, but I don’t have it.
HR:
Ok. How can our audience learn more about you? What is your website?
CH:
www.iadhd.org
HR:
iadhd.org
CH:
For “inattentive adhd” .org. And we we produce videos there on our YouTube channel. And we’ve just finished interviewing 25 adults who got diagnosed later in life. And they’re sharing their stories. And they’re telling us how they could have been recognized earlier the kinds of behaviors that someone would see. So because our organization is slowly changing our focus is Hackie said, we now want children to be diagnosed before age eight. So our new focus is all children should be screened by the time they finish second grade. Because with so many children having this condition and us learning how harmful it is not to be diagnosed, we have a shorter lifespan by 12 years on average. And that results from the accidents that we getting involved in the inability to control ourselves when we have health problems. So over eating, sleep problems, drug abuse problems, and suicide contribute to our earlier Yes. So it’s a people are saying it’s a public health problem. There’s so many of these people, and the diagnosis and treatment is that I’ve been told the treatment for ADHD when you find the medicine that works. It’s more effective than the treatment for any other mental health condition. We have very effective treatments for ADHD.
HR:
The neurologist prescribed this medicine Do you know?
CH:
Sure if he’s an MD.
HR:
Anybody who’s an MD can do it?
CH:
Yes. Oh and nurse practitioners
HR:
And you can find sub specialists within those within doctors and within nurses who specialize in ADHD?
CH:
You I go on LinkedIn and I’m trying to reach out to other people with ADHD. If I put it there, I come up with, like 10,000. You know, and I think the, the, the more challenging thing is to find someone who is knowledgeable. But now, and perhaps you know this big because during COVID prior to that people had to go in person for the interview, to get a prescription renewed it, I had to go every 30 days to see someone and get a renewed prescription handed to me. But during COVID, all that went away, and people started being able to get diagnosed online, and to get prescriptions through online interviews. And the DEA has kept considering should this go away or not. And they two times now they’ve delayed the situation, because I guess they’re realizing how, how helpful. I mean, it’s made a drug shortage, as we have more and more people get diagnosed, but they’re people live in places where it’s hard for them to get to someone who’s knowledgeable. And so there are these online places. And I would suggest you do research. We have articles on our website about how to evaluate the online service providers. But I think that’s a good resource to because they say they diagnose and treat add, and they would have the experience with having rich reaching a lot of adults.
HR:
Can you comment on the role of psychologists versus MDs?
CH:
Well, sometimes the doctors don’t feel comfortable diagnosing and so they will partner with a psychologist, psychologist can diagnose. But Mother I proviso is if you go to see a psychologist, you need to know. Because that what are you going to do with the evaluation because they’re not able to provide you with medication. And so you want to think both things you want to be able to get the diagnosis, but you want to be connected with someone who will help you with the medications. The other thing is psychologists sometimes offer people neuro psych evals, which from Dr. Brown, who’s been in this field for a long time, says, and others I’ve heard say it that is not helpful. It could tell you some other helpful things. But it is not the way you get diagnosed about ADHD. And it still comes down to the no, there’s no simple Well, I guess actually, that we’re that AR is supposed to be very good, helping people to sort out if they have ADHD, but it’s still down to the fact when you go to talk with the physician. He has the rating scales, but it comes down to his interview with you. And understanding what your life your daily life is like.
HR:
How would you like to see society better understand and address inattentive ADHD?
CH:
What two things if more of us with ADHD came out and was able to say we have it? That would it’s just like gay people coming out? And you know, is this? They’ll say, Oh, I didn’t know that one. Oh, that one too. Oh, look at all the people I know that have this condition, that alone would make a big difference, it would reduce the stigma, because you have friends or family members that had this. And so as we increase crease the numbers and not increasing it, because the drug companies are promoting a product, but increased the numbers because people are figuring it out. They’ve had hurtful lives, and they’re figuring it out. So the more people that figure it out, the more accepting it’s going to be. And, and, and that is a key thing, because this condition, I think, has a lot more stigma than some of the other conditions. And I don’t know why. But it just seems to be there’s less tolerance, there’s less understanding for people with ADHD.
HR:
Well, Cynthia Hamer it’s been quite a journey today to learn all of these things about ADHD and your unique perspective. I’ve learned a lot and I’m sure our audience has. So thank you very much for being with us here at Different Brains. Keep up your great work and And we hope that you’ll come back and join us.
CH:
I’ll be happy to come back.
