(3 min 15 sec) In this episode: a man with Down syndrome reunites with his father after a cross-country trip in a viral video, a high school football player with autism scores a spectacular touchdown, an athlete with Parkinson’s becomes an American Ninja Warrior, and more!
(27 mins) In this episode, Dr. Hackie Reitman speaks with Dr. Marlo Payne Thurman. Dr. Thurman is a professor at the University of Northern Colorado and a private education consultant. She is also a survivor of a traumatic brain injury (TBI). Dr. Thurman defined what “twice-exception” people are, highlights the challenges they face, and discusses her own recovery from a TBI.
To contact Dr. Marlo Payne Thurman, email her at: firstname.lastname@example.org
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HACKIE REITMAN (HR): Hi I’m Dr. Hackie Reitman welcome to another episode of Exploring Different Brains. Today Exploring Different Brains takes you all the way out to Colorado where Marlow Thurman was a special consultant to all of us neurodiverse people whose brains are a little bit different in education and in a bunch of other things-and Marlowe herself has a very interesting neurodiverse history. Marlowe welcome to Exploring Different Brains.
MARLO THURMAN (MT): Good morning thank you.
HR: Marlowe you and I know each other because we’re out there on the speaking tour… we were last out at the United States Asperger’s Autism Association now all the way all the way out there in Portland Oregon closer to you than it is to me and you’re a very unique individual why don’t you start telling our Different Brains’ audience how you, Marlowe Thurman got into brains.
MT: Well I actually started out in school like the normal person and went and completed a doctoral level sequence and school psychology…and was kind of working my way through a private practice in Boulder Colorado and working with a lot of different types of kids and walked into a box warehouse store and got crushed by 800-pound pallet a conference tables and sustained a TBI. So, in the midst of you know a private practice and already working in the field and training in some neuro psych and that kind of stuff then I was living it so that made kind of an interesting adventure
HR: Traumatic brain injury.
HR: Let’s define that for our audience
MT: Um well you can have head trauma you can have concussion, but a TBI is when you have more than just the kind of immediate effects of a post concussive syndrome. You actually have damage to the brain that alters kind of the course of – and literally it’s usually caused by two things it’s some shearing in the brain of some of the neural synapses that are in the brain. There’s quite a bit of research that shows that the swelling that comes from from a concussion actually causes brain trauma as well. So it’s kind of a more lasting than you know when you think of just a concussion or a bump on the head it’s actually a more lasting and more lasting condition that is ranked from mild, moderate, to severe.
HR: All right so describe to our audience what your TBI was at its worst and what it is now, to you.
MT: Um it’s interesting when you have a TBI the very first probably six or eight months it’s kind of foggy…like you’re kind of blessedly protected from knowing really what’s going on. I mean you kind of know like I remember the first days and weeks after the accident and I lost the ability to write I lost the ability to I was trying to journal some of my experiences because you know by that point I was already involved you know I had to be with a lawyer because um you know…anyway long story short I ended up having to go through a legal battle with the warehouse in which I was crushed. So I was advised early on to start trying journal and that’s been interesting to go back through the years because I really lost the ability to even write some simple words although some of the bigger words stuck. So like I say there’s just some differences. Probably for me um once that fog kind of wore off six months or so I was having pretty severe sensory issues. In other words I was having a hard time filtering my sensory system I would get evil easily over stimulated that happened before I just wasn’t aware of it. In other words my stamina was super tiny I was you know sleeping 18 20 hours a day during those first months. Once I finally kind of woke up and started you know really kind of being able to function a little bit better then I was having you know a lot of problems with sensory processing. I was having a lot of problems with managing executive functioning tasks…a lot of problems too with reading and writing but I just thought probably the stamina and the fatigue were the biggest and then like I said it’s pretty common but in head traumas of my type within eighteen months I started having seizures…and I was having partial and temporal lobe seizures. So in my experience, that was the worst is during the time I was really having those seizures but to the people around me I was much worse than those six you know those first six or eight months because I was so absent and unavailable.
HR: Described for our audience what a temporal lobe seizure is.
MT: Um you know there’s there’s different types. In my case I actually did I dropped I dropped to the ground I dropped like a hot potato. So I would have usually I would – so there’s different types of seizures and by the way I’m certainly not a seizure expert, I know my two but I don’t I would claim to know other people’s seizures…but in my case I would get a really sharp pain and kind of my right temporal lobe and immediately I would just be out, I would be on the ground and that wouldn’t matter where I was or what was happening I would be on the ground. I never had grand mawls I never had convulsions or you know some of those things I people who’ve seen me said I had you know kind of a twitchy kind of a thing side of my face side of my hand would kind of be twitchy, and I’d be out for you know anywhere from 10 to seconds to minute minute and a half…and then I would just kind of come to and at first they really thought they were some kind of a fainting spell because in other words it took some time to get him diagnosed now the partial seizures were very different in that I kind of retained consciousness but I wasn’t able to speak, I wasn’t able to move, but I didn’t go down. So I was actually having almost from you know from a partial sometimes they were called absant seizures and sometimes they were partials but literally to the point that I would lose the ability to speak sometimes for five to seven minutes where I couldn’t speak at all, and I couldn’t really control my movements, although I was kind of still setting up and kind of looking around according to people who have seen them I was definitely not present but I was and I would remember the sensation of wanting to speak but not being able to speak. That was probably the most noticeable on the partial the temporal lobes would take me out, so I don’t remember them at all.
HR: Tell me what asynchronous development means to you.
MT: Um I’m kind of the 2e expert you didn’t mention that part in my bio. I’m an um…as school psychologist I specialized in a group of kids who are both gifted and asynchronously developed. In other words they’re…if you think about a bell curve you know kind of a standard bell curve it’s kids who have skills on both tails of the distribution. Now that’s obviously the extreme of what we call twice exceptionality and that they are both gifted and disabled, but asynchronous development then is when their skills that are far from other skills. In other words a kid can be highly developed maybe you know they’re a gifted kid born with innate cognitive ability but their sensory system hasn’t caught up yet, or they’re born with very high opted for math problem solving but can’t read. So that would be examples of asynchronous development but but the extreme tails of that bell curve would be the true term of twice exceptional, which is gifted with a disability.
HR: Well that makes sense twice exceptional.
MT: Yeah 2e or twice exceptional yeah
HR: You’re an expert twice exceptional.
MT: I try to be, definitely been doing it a lot of years I’ve seen I’ve seen probably 4,500 twice exceptional kids and that’s not a very big stretch. You know when I count file folders I’ve got file folders on 4500 kids in my practice now some of those I’ve tested myself some of those I’ve just reviewed records from other places I did own a school for a number of years that was a twice exceptional school…and during those years we had about 150 kids come through the school. So like I said just I’ve worked with a lot of really quirky kids through the years and sometimes the most quirky the kind of the weirdest kid or the most unusual…everyone else thinks they’re weird I think they’re that I think they’re adorable, but the point being those kind of really unusual kids those are the kinds of kids I’ve specialized in working with throughout my career.
HR: And what about adults, do you do any work with adults.
MT: I do, mostly with adults with autism I don’t have too many other kinds of adults that come to my practice. Occasionally you know I get a client who you know the age of 50 really wants to figure out why they’ve struggled so hard throughout their whole life with a learning disability that was never diagnosed or something like that. So I do have some asynchronous adult clients but it’s a handful um I would say the majority of my practice has been young children, but I’ve also you know I also keep my clients my clients generally stick around. So a lot of my clients are aging out into adulthood and as a result of that I’m starting to see more and more clients that I you now they’re in their mid-20s that I’ve seen them since they were you know six, seven, eight years old. So I’m getting old enough to have seen some of the lot of these kids grow up.
HR: Oh come on you’re not getting that
MT: I am.
HT: You’re still the kid yourself.
HR: Now on the bell-shaped curve take us through a twice exceptional individual. Did they quote, grow out of it or what happens to them in adulthood.
MT: It depends. Some gifted kids are really…ones who are gifted we’re born with in with higher level cognitive abilities I mean that’s what really the definition of gifted is. In other words, our innate cognitive potential is higher than in another population. So when we’re working with those kinds of kids they’re born with a sensory system that is too young. In other words they take in more sensory information than they can process. They might be able to think up bigger ideas than they can put to paper. They might be able to really you know do really high-level thinking but their motor skills, their fine motor skills are still very young. So some of the asynchrony is inherent in being you know, just being a gifted kid…and by the way we see that on the other end of the bell curve too. We see kids with intellectual disabilities having a synchronous development. So it doesn’t just have to be a gifted kid, just happens that I specialized in gifted kids. So when a kid is born outside of norms in terms of their cognitive abilities, very often some of their other skills will develop at different levels and that can make them asynchronous. Now that’s a that’s the easy part of asynchronous development because what we have in extremes, that I see, is very often in addition to those normal developmental things that just haven’t caught up yet or those normal things that haven’t aged out yet. We’re also seeing some mental health social emotional behavioral learning disabilities all the way into the extremes of you know bright kids with autism spectrum disorders. So in other words that could take a the the term is very very broad and that can cover it can cover any type of kid who has skills that are you know ranging from the first percentile to the 99th percentile and or above those and below those numbers and it can fall anywhere within there, and it can be any of the skills. So like I say it’s a very it’s a very mixed bag in terms of working and identifying some of those things.
HR: What’s the biggest single thing about a twice exceptional individual that our audience may not get?
MT: How exhausting it is to be twice exceptional…and by the way I think I take certainly for my own TBI experience to understand that when you’re compensating…in other words if you’re fairly bright and you can cover it you can compensate, you can fake it you have you can figure it out even if it doesn’t come easy for you, you can do that for a period of time…and you can do that fairly well for a period of time until your reserves are shot and what happens…and this is what I see in my you know these kids start out looking pretty good, they look bright, they look corky, they looking consistent, they look unpredictable. On Monday they can answer the question, on Thursday they can’t answer the question but in their younger grades they they kind of get by. In other words they don’t qualify for special ed services, they don’t need a you know they don’t even though need because they don’t look bad enough yet…but what happens especially it seems like during those growing up years where you’re growing you know or where we’re they need support so usually they’re not getting the supports they starting to grow a foot a year and we’re really developing and these young people are really you know coming through those growth spurts. I really see what I what it starts out is kind of adrenal activation…and by the way in autism it’s a whole different story because kids with autism get this when they’re tiny and little tiny babies but you’re more you’re more kind of if there is such a thing you are more vanilla, give you know you’re more traditional looking. Twice exceptional kids kind of can keep it together for a few years, but what happens is somewhere during you know 8-12, sometimes they make it to 13-14 they really start having a lot of problems with digestion. They start having problems by not being able to sleep. They get headaches, stomachaches and it starts looking like anxiety…and what that really is is adrenal activation. In other words they’re using too much energy in a day and they’re having to having to dip into these biological reserves that we all have for survival but that’s not very sustainable…and so what happens is they’re exhausted even though they’re not tired, sleepy tired, they’re exhausted and that overtime room results in some other real big problems because it actually affects the way they pull nutrients out of their food, it affects their you know digestive tract, it affects their detoxification process, their cellular respiration process, some of these higher-order functions that we need for long-term sustainability get taxed too hard during adolescence…and we start seeing that’s the place where we also you know walk to middle school instead of having one class and one teacher who’s kind of got our back. Now we’ve got you know seven classes and seven teachers and we’re trying to navigate all these you know different people…and what what I really see is that that’s where the sustainability failed them and they’re not able to literally make it through a school year…and so we start seeing behavioral stuff. We start seeing you know some of the young men become behavior problems. In other words that’s easier to act than to keep working and not be successful. Young women can be very internalizing, again those are blatant categories that don’t apply to every kid because we can have young men doing what young women do and vice versa, but I have you know I get kids who are cutting on themselves or kids who are, you know, really very depressed, very suicidal. So I see a lot of that mental health stuff kind of popping up in those years and when I really start working with those kids, first thing I’ll do is put them in bed for a week and it’s amazing how; I mean I’ve been able to circumvent a number of hospitalizations for kids by putting them in bed and letting them really rest and you know making sure they obviously have some supervision around that…but just getting them rested and then figuring out how to work with the things that are consuming all their energy in such a way that they’re not so exhausted. So that’s the I think that’s the number one hurdle and it’s the one that we missed because we don’t see that that kid got so tired we don’t recognize how how tired they really are.
HR: And it’s tired for a multitude of different reasons depending on the individual.
MT: Right but more specifically it’s tired because of amount of cognitive energy…and it’s important to recognize that we have cognitive energy, physical energy, emotional energy, those are different buckets we don’t get to feel one from the other. Whenever a bucket is empty it hits our reserve, which is our fight/flight adrenal predation system and so from that standpoint what we get is it’s usually cognitive fatigue and cognitive fatigue comes from the need to compensate for that asynchrony. In other words, the more you the more asynchronous you are, the more energy it consumes to compensate for that asynchrony and the more you have to fake it and work harder than the next guy to do the same thing.
HR: This is very interesting I was rather ignorant of the whole pituitary, adrenal, and what you’re discussing. The analogy I make to myself as I wear hearing aids now, which I just started wearing about three years ago and I’ve been pretty deaf since I’ve been 18…and I didn’t realize until I got hearing aids how much energy it was draining just to be reading lips, to sit at a board meeting and bluff and pretend you knew and try to read body language and now that I can actually hear you, it’s easier it’s easier and the cognitive uses up more.
MT: At the end of the day, when at the end of that day you’re less tired than you would have been, you know have you not had those hearing aids…and that’s a perfect example, but now add six seven eight things. Most these kids don’t just have one thing, they have five or six bleeders, is what I call them. You know we’re kind of doing triage to kind of stanch the bleeding to get them so they’re in a position where you know, they can use their energy to function instead of using their energy to compensate.
HR: Just take us through the anatomy and physiology rather briefly. Okay, I have Asperger’s my parents make me go to this big party, my aunt Sadie who’s got this horrible strong fragrance of perfume hugs me close, my sensory is overloaded, sounds lights, everything. Now take us through what your brain is doing.
MT: Well by your tone, autism specific…and I think it’s important that we recognize that the individual with autism isn’t just a more extreme variant of twice exceptionality it’s its own. It’s it’s something and I’m a firm believer in this idea, that people with autism don’t have the same sensory system that the rest of us do. They have a more heightened sensory system. In other words…and I’ve talked to you know hundreds of people with autism through the years and I’m finally hearing them and what they’re saying is, you know, all of you run a duel or you know three three Lane a highway system. In other words you’re paying attention to what you hear, paying attention to what you see, and you know occasionally a smell might pop in on you but you’re pretty good at filtering out and running on a 2 or 3 Lane kind of highway system…meaning that the information is coming in and I can process it and go back out. Now in autism and I’ve heard hundreds of people with autism describe this…and what they’re saying is that I don’t have that filter I see it, hear it, smell it, taste it, touch it, feel the motion, feel the air pressure, feel the the feel my digestive responses…and I either can’t tend to those, or I can completely block them out through a full-on block out, but in the in autism I really think we start with a different sensory system all together. In other words it’s like that all the sensory systems all eight of them in specific are processing in real-time…and so what that does is it changes the ability, the amount of energy…first of all it changes the amount of energy that is necessary to manage that that party that you’re talking about. So in other words, that kid by practicing there’s some thought process around you know maybe I can get
ready for this, or get ready for that, but you’re still dealing when you say, I think you use the word sensory assault that’s literally what it feels like…and I had one guy I was working with explained to me, says you know it’s like all of you have a full tank of gas and you have two sensory channels that you have to use that gas to filter. I have a
fourth of a tank of gas, and I have eight lanes of information that I have to filter and so my gas, the gas in my tank gets used up much more quickly in that in a very short period of time those eight channels of sensory information all coming at me because I don’t have an original filter to be able to listen to this one, and ignore that one then there’s something that makes it so that it consumes all of my energies very quickly. So the first thing is the sensory. I think in addition to that though we get some very big differences in terms of how because of that sensory difference the things that are remembered the things that are stored the focus. In other words, there might be if you’re you know, if the if the aunt’s perfume is noxious but the carpet is particularly interesting that I might walk away from that party with the full memory of the pattern of what that carpet was, whereas a neurotypical person didn’t notice the carpet at all. Does that make sense?
HR: Yes it does, Now Marlow what was it like being the director of the US Autism College Project?
MT: Yeah it was fun. It was kind of a project that Larry and I put together to really get colleges on board with some formal training that would allow them to serve the individuals with autism. What we found was that especially you know we have these kind of quirky bright kids, with autism who had a lot of help in school, who had an IEP, and they had special ed teachers, and they had parents kind of backing them in their corner…and they were able to get through high school and do fairly well, and get themselves into college but the attrition rates were sky high. In other words, without those kinds of supports that they were kind of used to, they really did make it. There was also another population that made it all the way through college, but you know then were couch locked at their parent house after college because they didn’t have any of those continuing skills. So Larry and I kind of created that project…and it started with some of the colleges we were working with, you know Stephen Shore, Dullfi. Working with some of the things he was doing to train there…and so we put together that project…and we were able to train a number of colleges, or work with a number of colleges through the years through our conferences that we were able to facilitate some nice partnerships and relationships so that we could more comfortable say, you know well if you want to go to this school here’s a couple of people we know, and here’s the disabilities coordinator and here’s what we can do. But the project didn’t really take off as much as we had wanted it to because college funding is scarce and there’s not a lot of excess funds to train…and the other thing we found was that a lot of these colleges and universities really don’t want these kids there. They would rather have them go somewhere else…and so like we say, we kind of hit some big road blocks that slowed the momentum down, and to the point that Col Johnsonsin project has kind of become a conference training model, but it hasn’t gone a lot further than that…and it has to do with limitations in funding for higher ed to be able to pay for training for individuals with autism. So that’s kind of where that’s at.
HR: What else might you want to speak to us about that I might have ignorantly might have missed in this interview?
MT: Actually you introduced it, but that idea, that our mind and our body…that wellness piece is huge…and I do, you know I’ve really found that…you know it has been interesting, you know that’s really the personal journey side of my story, because along with working with all of these 2es individuals, I’ve had to live in a body that was overnight turned twice exceptional…and so you know I’ve really…and you mentioned the exercise piece, and I think that is so critical that we have to keep moving, that we have to keep respirating, we have to keep our bodies healthy…but I really feel like there’s a whole part of our society that is really blind to the fact that we are poisoning ourselves with some of the things that we are eating, and some of the things that we are drinking in our food supply…and I was one of these people, as a young person, that made fun of you know gluten free and organic food people…and as I’ve gotten older and have been diagnosed with some of these issues myself from not paying attention to that stuff, I’ve become very aware of that mind body connection. By the way I’ll pull up a whole nother book for ya, which is about clinical depression, I’ve actually dealt with some depression because of some autoimmune conditions and I’ve had four years where I was literally covered in hives because my body was so tanked out physically, that I ruined my health by continuing to fight the good fight and to work beyond my means, so all good stories.
HR: Dr. Marlow Thurman, how can our audience get in touch with you and learn more about you.
MT: Well I’m an easy google, so you can read a lot of my short work just by googling my name. I don’t have a website, which is sort of crazy but I keep myself pretty busy without one. So the best way to get ahold of me is through my business email. Which is email@example.com.
HR: Marlow thank you so much for being with us. We’ve been talking with Marlo Thurman, Dr. Marlo Thurman the twice exceptional expert expert on the adrenal with Two We consulting out there in Colorado, herself a traumatic brain injury survivor. Marlo thanks for all you do, and thanks for being with us here at Different Brains.
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.