Uniting Physician Perspectives for Neurodiversity | EDB 83
In this special episode of Exploring Different Brains, Hackie Reitman, M.D. presents five previous guests discussing breaking down barriers in providing quality health care for those of us with different brains. Guests include Dr. Steve Perlman, (co-founder of the AADMD and the man behind the health care services offered through the Special Olympics), Dr. Bankole Johnson (head of the Brain Science Research Consortium Unit at the University of Maryland School of Medicine, and one of the world’s leading authorities on the subject of addiction), Dr. Allen Wong (professor and director of Hospital Dentistry Program at the University of the Pacific Arthur A. Dugoni School of Dentistry), Dr. H. Thomas Temple (Senior Vice President of Translational Research and Economic Development at Nova Southeastern University), and Dr. Steve Sulkes (the Director of UCEDD/LEND at University of Rochester, and the incoming President of the AADMD).
62 Second Preview:
For the full interview with Dr. Steve Perlman: part 1 and part 2
For the full interview with Dr. Bankole Johnson: part 1 and part 2
For the full interview with Dr. Allen Wong: click here
For the full interview with Dr. H. Thomas Temple: click here
For the full interview with Dr. Steve Sulkes: click here
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HACKIE REITMAN, M.D. (HR): Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. We’re going to do this one a little bit differently. I have the honor of giving a keynote in a couple of days down at the annual meetings of the AADMD. That’s the American Academy of Developmental Medicine and Dentistry. And so what I thought this time is give you kind of the highlights of some of our interviews with some of the leaders in the frontlines of medicine and dentistry, who make sure that we all have access, no matter what our diagnosis is and no matter how different our brains may be.
First up, we’re going to take a look at my friend, Dr. Steve Perlman, who is one of my heroes. He’s one of the co-founders of the AADMD, and he was right there at the birth of the Special Olympics as well.
STEVE PERLMAN (SP): The challenges are huge Hackie, you know as you know everything we do, my job is to really now currently is to increase access to care for people with intellectual disabilities, and to help educate help health care providers to take care of them and to take better care of them but we are faced with so many barriers, you know I’ve lectured about this my whole career and I always talked about that one of the biggest barriers is payment, finances, you know, people they tend to live on the – people with ID tend to be at the poverty level, they don’t have access to quality health care because their limitations, the problems with the medicate programs, every state has a different medicate program but it certainly is not helpful to people that take more time to examine them, to understand their problem, so I’ve talked about provider, I’ve talked about finances as being a huge barrier, I’ve talked about lack of health care providers just don’t have the material… sorry, health care providers don’t have the education background to treat these patients, you know the medical school curriculums are packed, dental school curriculums are packed and as a matter of fact we have been fighting dental schools to change the curriculum to educate dental students in the care of people with intellectual disabilities and we’ve made a major roadblock, we fought this with the council on dental accreditation for years and the only thing to this date, the only thing that we could get passed were the dental students be educated in the diagnosis and treatment planning for person with special health care needs.
We were never able to get them to commit to actual treatment and that’s because the schools say number 1, we don’t have a faculty to treat, we don’t have a faculty to educate the students and number 2, we can’t make any money on the schools at doing these services and so can you believe that the only thing we were able to get after all these years and all this fighting, they would not commit to having a dental student actually treat a patient, is only the diagnosis and treatment planning. And medical schools… so now one of our new projects Hackie for AADMD is we are actually have gotten a grant to change medical education and to develop education for medical students and the treatment of people with health care needs and I’m very excited about that because–
HR: I was lucky enough to hook up with somebody at Boston University where, via Skype, I gave a lecture on it to the third year students at Boston University and I was delighted to be able to give the first several lectures in neurodiversity to the American Academy of orthopedic surgeons this past year also, but it’s gotta a long way to go. I think that maybe, what maybe on the horizon to really help this, because what I tried to do is to figure out if I’m a young doctor or dentist now, what is keeping he or she from embracing this? And a lot of it is ignorance, they just don’t know how, it’s overwhelming to even think about it and what may be on the horizon Steve that the AADMD might champion is by hooking up with our colleagues in Silicon Valley, is the use of artificial intelligence, and technology and apps, to make it into a cook book of sorts. Because right now you hit a wall, I know when I’ve have spoken to doctors about it. And you are tackling that to try to change it, and you are running into roadblock after roadblock.
SP: Yeah but Hackie, figure as a healthcare professionals this is what we have to deal with first of all… you know so it’s more than finances, it’s more than lack of education of health care providers, there is this stigma, you know in your field, you know everybody … I’m a sports medicine guy, because that’s what they lead at in your specialty of orthopedic surgeon, they…
HR: We only fill half the fellowships for pediatric orthopedics.
SP: That’s right, those are the cream, I’m wanna be in sports medicine… I wanna treat the athletes of richer families. So you’ve got the stigma of you are treating people with intellectual disabilities that’s ‘cause you are not good enough to treat neurotypical people. You know, the lack of communication, the problem with communications problems, you know you’ve got the patients spoke all day and now you’ve got somebody who’s brought to your office because maybe they have a limp or their behavior is bad now, because all of a sudden they are exhibiting behavioral issues. A lot of times that behavioral issue is an underline medical problem that that person can’t express to you, so you get somebody who brings the patient from a group home and you are talking to the caregiver and the caregivers says I just drove him here, I don’t know the history of the problem. I don’t know when it started, I don’t know how it manifest itself, is it worse in the morning than at night? I don’t know, is it worse when it has activity? I don’t know and you are dealing with a non-verbal patient. So those communication problems to somebody who has a busy afternoon they are terrible! You know the lack of… the problems of who has ownership of this problem, you know you see a problem with one of your patients and you need to operate them but you need consent of a legal guardian who’s is gonna take…
HR: That’s what I mean, so what you are describing it’s like this- and you have to make it to… here’s the cook book pal, ABCD… You took, back in the formation of this, an individual who was supposed to get all of their teeth pulled because it’s the best thing to do, a consensus of 99.9% of dentist in the world, that’s the best thing to do for this individual and Steve Perlman said no! We’ll go in there, here’s our cook book- we’ll do general anesthesia we’ll get the right assistance, the right equipment, the right everything, we’ll also contact their medical doctor to see as long as this patient is under general anesthesia what else are we gonna do, there’s communication, there’s spirit, there’s a goal and guess what, everybody likes a leader. If the leader has a good thing he wants to do, people are basically good I feel, but they get scared when they are ignorant and they get scared when they don’t know what they are doing and they get scared when they are not getting paid and they have to meet their overhead, you know, and these are all things where we’ll say you know here’s how we are going to attack it and that’s what you’d been doing. All I’m doing is trying to be on a soapbox to get people to listen to you because you know what you are doing.
HR: Next, let’s hear from Dr. Bankole Johnson, who’s the head of the brain concentration down at the University of Maryland. Bankole was featured in the HBO documentary Addiction, and he’s one of these people who really gets it. He’s a leader, who understands as does the University of Maryland, the need to get under one roof. The neurological, the mental health issues, and all of the associated issues that we see in different brains.
…here are Different Brains we’re trying to get it all under one roof and everyone except for you is in all these different silos where you have mental health issues over here and developmental here and neurological issues here and it’s all the same stuff. Wouldn’t you agree with that?
BANKOLE JOHNSON (BJ): It is all the same stuff and I can give you a perfectly good analogy if you’d like to hear one.
HR: I would love it.
BJ: Lets say you were walking down the streets of else where and unfortunately for you somebody punched you in the head. Now you might well say when you got punched in the head and you later became depressed because somebody punched me in the head obviously it upset me because I wasn’t very happy about it and I wasn’t happy that I got punched in the first place. But here is the other piece of it. Could it be that when you got punched in the face that caused a swelling in your brain, that swelling in your brain changed specific structures in your brain and it made you depressed and it had nothing to do with your psychological reaction to it which could have been a part but the primary issue is because you got punched in the head. Now also when you get punched in the head as you know, you have traumatic brain injury so you also have traumatic brain injury also seeded with it. So the neurological is associated with the psychological and is also associated with the behavioral and it’s all in one brain.
HR: …you have no idea, this is such music to my ears it’s like a kindred spirit where you get it. Now why is it? And I’ll quote here Steve Ronik, he happens to be the head of Henderson Behavioral Systems down here at Behavioral Health Henderson down here in Florida they have 800 employees, they serve 30,000 patients a year, he said hackie why is it when you go to a cardiologist or an oncologist there is no stigma but if you go to a mental health professional there is a stigma attached and we get better results. We get better results and what you’re doing there, it sounds like it may help get rid of the whole stigma to all of this.
BJ: I couldn’t agree with you more and I think it dates back to a few hundred years where people tried to separate the mind from the body as if it were two components of a system that never really talked about another and at least my angle is going to be some higher order type of cognitive thinking and the body was meant to be basically the mechanics and they were not connected so if you’re going to see someone if you have mental health issue people believe that it must be due to this nebulas concept of a mind and that its some how your responsibility or at least partially your responsibility and it has nothing to do with your body. Well we know now that this is completely incorrect. The brain is the most complex organ in the universe, it has connections with you heart, it has connections with basically everything else and to give your friend the heart analogy we now know that individuals who have heart disease often also have mental manifestations of that heart disease and brain stress or distress in the brain is also associated with cardiac arrest and cardiovascular disease. It’s one system. I think some people like to make it simple, but as my professor used to say it can only be as simple as it really is.
HR: Next, we have another dedicated dentist, Dr. Allen Wong, also of the AADMD. And he’s at the Pacific School of Dentistry where he teaches and inspires. And he has some very good insights into helping those who need our help the most.
…what message, if you had to give one message on the podium to the participants at that meeting in Chicago, the combined meeting of the IADH and the Special Care Dentistry Association, what would that succinct message be?
ALLEN WONG (AW): The succinct message is this: That we need to think things differently, through a different paradigm; our patients with special needs, we need to focus more on what we call caries management by risk assessment. Many of the problems that are faced with our patients with dental problems are preventable, and if we capture them early and use some of the prevention strategies such as the fluoride brushes, and now we have a new method of silver-diming fluoride that might be something to look at. If we work on the prevention area earlier, we wont have to have the patient suffering of dental disease. So I think we need to all work together concentrating on more research of the prevention. So we can capture our friends at an early age and hopefully help them to not have unnecessary teeth flaws so that they can function and participate inside without having to have be silently suffering in pain. So my passion is, let’s work together in prevention, and lets work together in caries risk assessment.
HR: Well that’s great. That was a great, great statement, because oftentimes, we physicians and dentists get so caught up in the day-to-day logistics of the office, we forget that word prevention sometimes. And that old adage about an ounce of prevention is worth a pound of cure, in the dentistry world, based on my limited understanding, it’s a ton of cure. Can you elaborate, and I know our friends also at the tooth fairy, also America’s Tooth Fairy and the other people all doing a great job in prevention–could you elaborate on some of the specifics of prevention?
AW: Well, certainly. I’d happy to. And you mentioned, also, another great organization, America’s Tooth Fairy, they have done a tremendous amount of support and–so I cant say enough about them, they’re a great organization too. But in prevention, its not a one thing that causes cavities or gum disease; its a multiple of things. So I think in terms of being aware of things and looking for misconceptions. For example, many of our patients take medications; some for anti-seizures, sometimes for anti hypertension, anti-neuroleptic, all of those medications have side effects. One of the major side effects is drying of the mouth. And the drying of the mouth causes a stomach effect that increases cavities–its all about chemistry. So whenever our saliva is decreased or changed, the PH is also altered, it becomes more acidic. And a lot of our patients have multiple medical problems that have side effects that have gastric reflux. That also brings acid to the mouth and that also weakens the teeth and makes them more prone to cavities.
Those simple things working together in an interdisciplinary approach, and saying is this the right medicine, and what is it doing to your mouth, if you start thinking in those terms and saying we need to do things that counteract it; either neutralize some of the acids in the mouth to minimize the cavity disease process, or that we need to garnish the teeth or seal the teeth at an early age so that they are more resistant to cavities, those are the things that we think about; your brushing and flossing is helpful, but its not what’s going to solve the problem, because really understanding that the chemical change in the mouth, whether its lack of saliva, decrease of saliva, increase of sugar intake–so the nutritional concept, the hygiene concept, the salivary health is all important things that we should be thinking about for the patient.
HR: Next on Exploring Different Brains, we move a little bit closer to home in Florida. We go to Nova Southeastern University where Dr. Tom Temple, who’s the head of TRED–The Translational Research and Economic Development. Tom has a great history as a brilliant orthopedic surgeon, specializing in oncology. I used to refer patients to him down at the University of Miami back when he was an orthopedic surgeon actively practicing. And then he took over the tissue bank down there and now, he’s at Nova Southeastern University. And Tom Temple is a visionary who’s trying to get all the research under one roof. And he’s another one who gets the importance of all of our different brains.
H. THOMAS TEMPLE (TT): I think that this is one of the final frontiers, our fundamental understanding of the brain, and we have a number of behavioral initiatives and… Parkinson’s disease for example, and addiction and people whose brains have been affected by toxic exposure; and our goal is to bring in all of these behavioral elements into the various institutes and there’s so many synergies between the brain and cancer, the brain and the immune system, the brain and stem cells for example that we could fundamentally take a human being with Parkinson’s disease and deliver a stem cell product into a very specific part of the brain and reverse those effects. Now, we have a Parkinson model right now in a rat, where we actually created a defect in that part of the brain and those animals walk in a circle just like a part of a behavior, but when we repopulate that part of the brain with a stem cell we can write their date. So we are looking at different ways of using stem cells, of using drugs and delivering them in the blood brain or through the blood brain barrier or across the blood brain barrier through a nasal root. So there are a lot… when you combine pharmacy, when you combine cell biology, stem cell research and neuro-biology, and neuro-anatomy and what we are doing is breaking down those silos. We don’t have the department of Parkinson disease, we are not the department of bad behavior, I mean they are together and that’s the whole purpose of the Centre for Collaborative Research, I mean, everybody is focused on problems from their different perspective and they actually talk to one another, and they actually learn from one another and is not just Nova Southeastern, we have global relationships with the university of Saint Petersburg, with India, with the Karolinska institute, so this is a global enterprise. It’s not just Nova Southeastern and we’ve gathered the best of everybody in the world to look at these problems and tackle them.
HR: Finally, we’re going to talk to another one of the leaders of the AADMD. Who’s on a path to become its president. And that’s Dr. Steve Sulkes, from the University of Rochester.
STEVE SULKES (SS): I actually I’m like many people who work with people with intellectual and developmental disabilities had no personal experience with this population. In fact when I was applying for pediatric residencies, where there were programs that had obligations with people with developmental disabilities I actually sort of rated them lower because I was scared. I happened to end up at a really great residency program at the time in Syracuse, New York at Upstate Medical Center. While I was there they created a rotation for pediatric residents focusing on developmental and behavioral problems. I was one of the first people to go through it and it was pretty creative. One of the things that they did was the first or second day they had us go to a state institution in Syracuse and after some introductory talk they had us go and meet some of the people who lived there and the first thing I was asked to do was to feed a guy lunch. This was a guy with cerebral palsy and behavioral challenges and was nonverbal and I didn’t know what the heck I was doing. I was wearing more of the purred food by the end of that meal than ever got into him. I was thinking this was going to be a long month. Anyway I got my lunch break and they had me go to this guys program area where he was getting served in a day program and there I saw the same guy that I couldn’t do anything with responding to a very creative teacher in the room and doing various tasks and every time he successfully completed a task they wheeled his wheelchair over to a wind chime that was hanging in the middle of the room where he could get at it and he would whack the wind chime and get a big smile on his face. I thought oh man did I misjudge this guy and did I misjudge the entire field.
Well over the course of that month I spent time in schools, in community settings, and really got to see kids with developmental disabilities in settings that were not health settings and I suddenly realized that these kids have lives and they were cute and they were fun and they were playful. I went to one school I will never forget, it’s called Jowonio in Syracuse where half the kids had disabilities and half were typical kids. At recess they went out in pairs to the playground and I went out after them and when I got out to the playground, if the kids weren’t using adaptive equipment I couldn’t tell which kids were which. I thought this is it! This is Valhalla this is the way it’s supposed to go in the world and I said boy have I been stupid.
I mentioned our LEND program and that we have people in all these different disciplines and we have 15 to 20 people come through each year and they’re all graduate students or fellows, advanced folks who want to develop in disabilities. One of the most powerful experiences we give them is to connect them with a family and go into the community and visit the family in the home or go to a person’s school or work place and have the kind of experiences I had when I was a resident of actually seeing what people’s lives are like where they are living and seeing the challenges but also seeing the successes when you get out of your professional bubble and start seeing people as people as opposed to patients or people we’re serving, I think that’s profound and my little dream, it’s been working great for our LEND trainees for many years, my dream is to have every primary care position and dental resident coming through the University of Rochester health care system have that kind of experience. Just 2, 3 visit with an individual or a family where you’re not being asked any medical or dental questions. You’re there to learn and you’re there to learn about the person’s life and find out about the family and the circle of support that person has. I think that once we get out of our professional bubbles we can understand people as people and not just as patients.
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This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.
Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.
Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).
Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).
This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.
In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.
