Podcast: The Medical Care Challenges of ADD / ADHD

Guest Bio

Theresa Cerulli, M.D., is a graduate of Tufts University, University of Massachusetts Medical School, Harvard Longwood Residency Program in Adult Psychiatry, and Harvard Fellowships in Medical Psychiatry and Neuropsychiatry. Dr. Cerulli is board certified in psychiatry and is on faculty at Beth Israel Deaconess Medical Center in Boston and for NEI, the Neuroscience Education Institute. Dr. Cerulli is the co-founder and prior Chief Medical Officer of ADD Health and Wellness Centers, specializing in the holistic treatment of children and adults with ADD/ADHD and coexisting behavioral health conditions. Her vision is in combining traditional medicine with healthy living to promote cognitive and emotional well-being.

Inside Mental Health Podcast Host

Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.

Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without.

To book Gabe for your next event or learn more about him, please visit gabehoward.com.

Episode Transcript

Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: You’re listening to Inside Mental Health: A Psych Central Podcast where experts share experiences and the latest thinking on mental health and psychology. Here’s your host, Gabe Howard.

Gabe Howard: Welcome, everyone. I’m your host Gabe Howard and calling into the show today we have Theresa Cerulli, MD. Dr. Theresa is a graduate of the Harvard Longwood Residency Program and Adult Psychiatry and the co-founder of ADD Health and Wellness Centers, which specializes in the holistic treatment of children and adults with ADD/ADHD. Dr. Theresa, welcome to the show.

Theresa Cerulli, MD: Thank you for having me, Gabe. Great to be here.

Gabe Howard: I want to start by addressing the elephant in the room. There’s just a lot of criticism when it comes to an ADD/ADHD diagnosis. I personally have heard people say things like, your child doesn’t need ADHD treatment, your child needs a spanking and other equally dismissive and frankly, stigmatizing comments. Now, some of the focus of your work, Dr. Theresa, is on trying to make the diagnosis of ADD/ADHD more objective. Do you feel that better diagnostic criteria will achieve less skepticism and better outcomes?

Theresa Cerulli, MD: You ask a complicated question, Gabe. We right now, ADHD diagnosis is made. The gold standard for the diagnosis is the clinical interview. So there is no blood test, brain scan, no, no traditionally diagnostic measure other than the clinical interview for diagnosis and as many people as you ask how they approach that process, you’ll get that many different answers. Unfortunately, we don’t, and historically we haven’t had objective means. There’s no standardization in other words. And this leads to both not only misdiagnosis, but overdiagnosis of the condition and underdiagnosis. I think it’s both a problem in both directions, frankly. So my hope is that we can do a better job educating not just the public, but clinicians. Clinicians in training, psychiatrists, neurologists, psychiatric nurse practitioners and pediatricians alike, and to add more of a standard process. We are, in psychiatry, one of the very few specialties that that that doesn’t use more objective means, and unfortunately, it does leave room for error.

Gabe Howard: ADHD has been in the headlines a lot over recent months. Why do you think that is and where does ADHD fall within the current mental health crisis that we are seeing just across the mental health spectrum?

Theresa Cerulli, MD: We are in a mental health crisis. And ADHD is certainly been one of the many challenges we’ve had during this mental health crisis. I think there’s we’re hearing more about ADHD because I think there is more awareness being raised. There are more treatment options. As I’ve said, that medications have certainly evolved. There’s also and I mentioned some non-medication approaches, there are some even medical devices that are that are coming out. Neurosigma has come out with a device that kids can wear at night, for example, that helps with ADHD. But we’re being bombarded with new information, some new options. But we don’t have insurance reimbursements for many of these. So therefore, they’re not accessible to the patients. So, we’ve got an overburdened system. Mental health has a lack of objective approaches to diagnosis. We’ve got providers who aren’t particularly trained in given subspecialties within mental health, and we’ve got the challenges of patients self-diagnosing and then the problems with telehealth. So there’s so many pressures going on. It’s not unique to ADHD. But given that ADHD is one of the most common neurobiological conditions, I don’t think we’ve talked about prevalence. I should mention that the prevalence in the US is about 16.1 million people of that number, 10 million or so are adults and the remainder are kids and adolescents. But it is staggering because of the prevalence and persistence of this condition with ADHD.

Theresa Cerulli, MD: It’s a big part of what we’re seeing as the crisis in the mental health system. And unfortunately, ADHD doesn’t often exist alone. 75% of the time there is at least one coexisting condition or what we call comorbidities within psychiatry. So, for example, ADHD and depression, ADHD and anxiety, ADHD and sleep disorders, ADHD and bipolar disorder, ADHD and tic disorders. The list goes on and on. That’s 75%. Sixty percent of people diagnosed with ADHD will have at least two or more psychiatric comorbidities, coexisting conditions, two or more. ADHD is not just about the child struggling with focus in the classroom and having bad grades, or the adult who has trouble concentrating at work and not getting a project done. We’re talking about a condition that is a change in brain functioning such that somebody has trouble with attention, concentration and impulse control in everything they do, in their conversations with their loved ones. In driving a car. So often you’ll see kids and adults with ADHD that have more accidents. They’re not paying attention to the details. So, there’s even higher rates of mortality with ADHD. Sadly, this is not well understood by the public or clinicians, yet it’s such a treatable condition. So, let’s try and bridge that gap between better education, better access to care and better understanding because the outcomes we can make such a difference.

Gabe Howard: So where do we go from here? If one of our listeners is thinking that they might have ADD or ADHD, or maybe wondering if one of their children may have, what should they do? How can I find the right medical practitioners so they know they are getting the right diagnosis and the right care?

Theresa Cerulli, MD: The important aspects in talking to your doctor about whether or not you have ADHD. The important aspects are make sure to have a good relationship with your physician. That’s somebody you, you know is going to listen to the details and doesn’t have. For example, the bias that you mentioned, Gabe, that that critical about this diagnosis even exist and it’s over diagnosed and that person’s not going to be particularly open to hearing the details. And it’s such a misunderstood condition. ADHD is so misunderstood not just by the public, but by clinicians as well. We’re not traditionally trained, especially for adult providers in in psychiatry, residency programs and neurology residency programs. We’re not well trained on diagnosing ADHD, frankly. So that said, if you’re the person going into your provider, first of all, make sure that it’s somebody who has again, that you have a good working relationship with who’s going to trust that the information you’re giving them is is accurate and that they’re really hearing you. Secondly, besides the subjective information, make sure that that doctor is willing to look at some objective information. At very minimum, ADHD rating scales, which are checklists of ADHD type symptoms, such as how long you can sustain attention, how are you filtering out background noises when you’re doing a task? How are you in terms of forgetfulness or inattention to detail, organizing your time, being late for appointments? Those checklists are called rating scales, and your doctor should be at least using some of those because those are also normative tools, meaning they’ve been tested in your average person, the way they would answer. But you can also just do things like ask for copies of report cards and teacher comments. I would emphasize it is so important to talk to not just the patient, but offer to have a family member give feedback, someone else where there’s an observer input, observer input. So a spouse, if you’re a kiddo being diagnosed that the parents giving input, sometimes even a coach, a teacher, the more information one can gather, the better in making the diagnosis and accurate diagnosis.

Gabe Howard: Dr. Theresa, it kinda sounds like you are saying that not only does the public have a big misunderstanding about ADD and ADHD, but it seems like a lot of practitioners, a lot of medical doctors, they also have a lot of these misunderstandings. They don’t really have a good handle or good training about ADD and ADHD. Am I hearing that correctly?

Theresa Cerulli, MD: You are. Sadly, that is true.

Gabe Howard: What can we do to help them understand? I can understand why the general public might be confused, but it is worrying to hear that there is something out there that is hurting people, and the medical establishment isn’t doing enough. And they should in fact be doing more. How do we get education into the hands of our providers? How do we get doctors to understand ADD/ADHD better?

Theresa Cerulli, MD: It’s such an important question. And in fact, a group of us, there were 13 to 15 doctors that we got together last spring trying to answer the same question and came up with a consensus statement about things that we would like to see change. And one of the action items indeed, was looking at ways to better educate clinicians. So really the consensus statement put together by, signed by the 13 of us and written up was meant to assist with helping both standardize the approach to diagnosing ADHD and to better educating clinicians from the start. So in residency programs, for example, having more lectures, especially in adult ADHD, when I trained and I trained at Harvard, I think in the four-year residency program, I had one lecture on ADHD. Now we’re going back 20 years, but I still teach with the residents, which I love doing, but it’s amazing to me that I am one of the few people who spends a lot of time talking about ADHD because it’s my area of interest, but it’s not so much built into their curriculum.

Theresa Cerulli, MD: So, I would say, one, we need to start from the from the get go when people are in training to actually have more standardization in the diagnostic protocol and in how to approach treatment that we’re teaching early stage before folks are even out in in practice. That would be helpful for being able to not just diagnose ADHD earlier, but also, as you said, Gabe, to be more effective on the treatment side because they’re also lacking information in that regard. I had one of the residents a few weeks ago were saying they were still taught to start short-acting stimulant medications. And that way, in case there was a problem, the medication would wear off quickly. And I was horrified because, of course, the short-acting medications are the ones that have the most abuse potential, and anyone who’s been in the field is specialized in the field knows that you try to start with long-acting medications and or non-stimulants than the ones that have the less abuse potential. So those are small examples. But in other words, I think we have to start early on with the education of clinicians when they are in training and have some standardized protocol for them as well.

Gabe Howard: Is this improving? Are more medical students getting this training? I know you said at Harvard they’re getting a little bit more, but are we seeing an increase across the board or is this largely stagnant?

Theresa Cerulli, MD: It’s largely stagnant, unfortunately. There aren’t enough specialists. The mental health system is overburdened. There’s the mental health crisis, as you know. There’s not enough. There’s just not enough clinicians to go around. So there’s not enough clinicians to see the patients, there’s not enough clinicians to teach. And I was asked, in fact, called by a colleague asking if I would be able to help start an adult ADHD clinic in Boston with one of the major Harvard teaching hospitals. And and I thought I can in order to make this scalable, I can barely keep up with patients in my own practice. But in order to make it scalable, what I’d be willing to do is teach other clinicians how to train the trainer kind of model to be able to start. But my question was why me? And when you have incredible clinicians at Harvard hospitals and the answer was, they still felt uncomfortable with making the adult ADHD diagnosis. This is a huge fear that by diagnosing the patients coming in for the seeking diagnosis evaluations, diagnostic evaluations are also seeking substances. So, I think that’s part of what’s happening for clinicians is this fear. We have the thing in training with do no first, do no harm. And so how do you know when someone’s coming through the door, if they’re if they’re truly looking for help, for focus, concentration, impulse control, in other words, their ADHD that may have gone undiagnosed versus who’s just coming in for performance enhancement medications and has the risk with substance abuse. It’s a very tough call. Certainly, there is more training needed. There’s a little bit of art and science to this, but sadly, there aren’t enough specialists and there aren’t enough people going into the subspecialty. So, we’ve got we’ve got some hurdles in front of us. I hope these kinds of conversations do help raise awareness. And we are all part of the mental health crisis, even at a major teaching hospital like Harvard.

Sponsor Break

Gabe Howard: Obviously, Dr. Theresa, there are doctors like you who are treating ADD and ADHD. Are the doctors who are, I hate to use the phrase on board, but I’m going to stick with it. Are the doctors who are on board and treating ADD/ADHD, are they running into any problems or is it smooth sailing for them?

Theresa Cerulli, MD: I guess I might be one of those folks that you’re asking if it’s smooth sailing. And the answer is no. There’s so much challenging providers right now in general, Gabe, It’s we’re coming out of two years with COVID, right? Where we weren’t even physically able to be in offices and check blood pressures and heart rate to be able to monitor medications where patients were everyone. Talked about a mental health crisis. Everyone was trying to wear multiple hats and didn’t have the supports needed in place. So our patients were anxious. They didn’t have access to their physicians. COVID really was an enormous setback, challenging mental health providers in general. Then there’s the challenges with with as we’ve mentioned, with telehealth, there’s pressure from the patients who are self-diagnosing when they didn’t have access to physicians. And then a big part of what’s challenging providers really has been the lack of insurance coverage. It’s not only clinicians that might not be recognizing the diagnosis. Insurance companies don’t recognize a lot of the treatment options we have and some of the newer medications I mentioned aren’t reimbursed by insurance at this point, and that is incredibly challenging for patients. So in other words, we might be trying to do the right thing as providers and the patients then don’t even have access to the treatments that we’re recommending because their insurance won’t help. So lots of outside elements besides just the fact that we have been challenged in terms of the number of providers, the lack of providers, I should say, available. There’s all these other pressures still on the providers who are available.

Gabe Howard: My head is swirling at the moment, Dr. Theresa, Because one of the things that I think about is that stigma and there’s stigma surrounding many, many mental health diagnoses. It obviously ADD and ADHD isn’t the only one. It just happens to be the one that we’re talking about. But one of the things that I think about is let’s take bipolar disorder, for example. If somebody said bipolar disorder is fake, we would immediately recognize it. Okay, well, that that person, we don’t have to trust them. Right. There’s that doctor would be written off as a quack immediately. And then I’m looking talking to you from the ADD/ADHD side. And I don’t think that a doctor would actually say ADD or ADHD is fake, but they seem to have this extraordinarily high threshold. The average doctor has this extraordinarily high threshold for wanting to see it or wanting to diagnose it. And I wonder how many people are getting missed, how many people are going in and saying, I’m concerned that my child has this. I’m concerned that my friend has this. I’m concerned that I have this. And the doctor, because of their limited understanding, is saying, no, you’re fine.

Gabe Howard: Dr. Theresa, it seems like there is a lot of stigma surrounding an ADD/ADHD diagnosis even among medical providers. And some doctors just don’t believe that it’s a real thing. And it really seems like even the ones who do believe that ADD and ADHD are real and diagnosable have an extremely high threshold. And I just wonder how many people are getting missed, how many people are going to a doctor and saying, I’m concerned that my child has this. I’m concerned that my friend has this. I’m concerned that I have this. And the doctor, because of their limited understanding, is saying, no, you’re fine. A lot of cases getting dismissed or overlooked. So what do you do if you think you have ADD or ADHD but your doctor is telling you no, everything is fine? I don’t want to tell people to answer shop or I guess in this case diagnosis shop. I don’t want people to just keep going to a doctor until they get the diagnosis you want. That sounds like a bad idea. But what do you recommend for someone who feels like they need help but they just don’t know who to even call or if they are being taken seriously?

Theresa Cerulli, MD: Yeah, it certainly is a is a real problem. And if you want the I’m about to give you a very frightening statistic. Greater than 80% of adults with ADHD are currently undiagnosed and or untreated. And that comes from it was an article in CNS disorders back in 2014. We are still very much underdiagnosing this condition, in part for reasons that you just described. It’s the to create some hope here. There really are specialists. There are people who truly do understand this condition. They may be harder to find, but they’re worth looking for. If you’re not comfortable with your primary clinicians response or they’re explaining that it’s not their specialty and they’re not comfortable, rather than just getting a second opinion, make sure it’s a referral to someone who’s a specialist as opposed to just any second opinion. And that may help. There are tons of online resources. ADDitude magazine puts out a list of people at the back of the magazine, puts out a list of providers who do specialize in ADHD around the country. I certainly encourage people to look at word of mouth is an important as well. But look at even through their insurance company, sometimes insurance companies, when they have contracted providers, the provider will list their areas of interest so that at least you’re going to see someone that has acknowledged they’re interested in ADHD and they work with a lot of ADHD clients. At least you’re starting with somebody who, who’s going to be open, non-judgmental on the topic and who isn’t going to be critical that this condition doesn’t exist.

Theresa Cerulli, MD: Be persistent and know that there really are you just don’t give up easily is my is the message I want to send to people there are providers out there who really, really care. I’m going to share. I think it’s worth talking about. My area of interest in ADHD started when I was a neuropsychiatry fellow, so I did my general psychiatry residency and I went on to do a neuropsychiatry fellowship and I was working with folks who had head injuries and stroke dementias and then my adult ADHD patients. And it was I truly just it was not only fascinating in terms of a condition that overlaps both with brain and behavior and neurology and psychiatry, which was my area of and is my area of interest. But to work with folks with ADHD and see the positives, the creativity, the entrepreneurial thinking, the high energy and just wonderful, really wonderfully inspiring through truly some of my most brilliant folks. So, I ended up moving more in that direction professionally before what then became also a personal investment on my part. I have a daughter who just turned 18 and she was diagnosed with ADHD and anxiety the summer just before second grade. And so, I’ve lived this personally, and she would have absolutely been the type of individual who would have not been diagnosed properly.

Theresa Cerulli, MD: She had no problems in school and was not a behavioral problem. So, you’re going to say isn’t then she’s one of these kids that you’ve just over diagnosed, Dr. Cerulli? And the answer is no. She truly meets criteria, but she doesn’t have more of the observable symptoms, meaning that she wasn’t the kid running around the classroom. She didn’t have a lot of the hyperactive, impulsive symptoms. It was more of the inattentive. She’s also incredibly high IQ. So, when she was neuropsych tested and they looked at her, her intelligence versus her cognitive functioning with attention concentration, they could see the gap in what her innate skill set should be and where she was actually performing on measures of attention concentration. So, it was worth continuing to pursue, even though the schools and the clinicians that we saw initially would have said, there’s no way this kid has ADHD. She’s doing just fine in school and she has no behavioral problems. It wasn’t until we had some objective testing and it took that was not a fast process. So, I guess I want to say there are specialists. It’s worth being persistent. Start with your pediatrician and ask to be referred to a specialist and look for folks initially if you need to through your insurance company that have self-acknowledged it’s one of their areas of interest is working with people with ADHD.

Gabe Howard: Dr. Theresa, thank you so much for all of your knowledge and for being here, today. Where can folks find you online?

Theresa Cerulli, MD: So, I am on my website CerulliandAssociates.com which my name is not easy to spell, Gabe. C E R U L L I and, A N D, associates.com. And I want to say, if you care about ADHD and care about making a difference right on the home page of my website, I did post the consortium call to action statement on hopefully standardizing the process for ADHD diagnostic measures and the call to action around a better, better education for our clinicians and the public, frankly. You’ll see that call-to-action statement link right on my home page if you are willing to sign. We are trying to collect signatures and using this both with insurance companies to hopefully have options for reimbursement for patients seeking more objective testing measures. And we’re also using the call-to-action statement to have congressional conversations with folks on the Hill, hopefully in crafting mental health bills that really can do a better job addressing the mental health crisis with regard specifically with regard to ADHD. And we’re asking you as citizens if you agree and would like to make a difference with us, please take a look and see if you’d be willing to sign that statement.

Gabe Howard: Dr. Theresa, thank you so much for being here.

Theresa Cerulli, MD: Thank you so much for having me, Gabe. I appreciate it.

Gabe Howard: Oh, you’re very welcome, Dr. Theresa, and thank you to all of our listeners. My name is Gabe Howard and I wrote the book “Mental Illness Is an Asshole and Other Observations.” I’m also an award-winning public speaker who could be available for your next event. My book is on Amazon because, well, everything is on Amazon, but you can grab a signed copy with free show swag or learn more about me just by heading over to gabehoward.com. Wherever you downloaded this episode, please follow or subscribe to the show. It is absolutely free and do me a favor. Recommend the show to a friend, a family member or colleague. Share it on social media. Send a text message, bring it up in a support group. Sharing the show is how we grow. I will see everybody next Thursday on Inside Mental Health.

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