The Spectrum of Neurodiversity, featuring Jude Morrow, Kayla McKeon, Bea Moise & more | EDB 300
In this special 300th episode, we revisit words of wisdom from self-advocates with varied traits and diagnoses that span the “spectrum of neurodiversity”.
Featured are:
TARA LERMAN – Tourette’s self-advocate, ournalist (full interview: https://differentbrains.org/demystifying-tourette-syndrome-with-tara-lerman-edb-263/ ) To find out more about Tara’s work, visit: https://www.taralerman.com/
MICHAEL TOLLEFSRUD – Misophonia self-advocate, Different Brains intern (full interview: https://differentbrains.org/life-with-misophonia-with-michael-tollefsrud-edb-226/ )
PRESTON FITZGERALD – Tuberous Sclerosis self-advocate, Different Brains intern (full interview: https://differentbrains.org/living-with-tuberous-sclerosis-with-preston-fitzgerald-edb-239/ )
SARAH GOLDMAN – Cerebral Palsy self-advocate and disability rights advocate (full interview: https://differentbrains.org/advocating-for-accessibility-accommodations-with-sarah-goldman-edb-225/ ) To find out more about Sarah’s work, visit: https://www.linkedin.com/in/sarahegoldman/
JULIA FUTO – Developmental Coordination Disorder self-advocate, Different Brains intern (full interview: https://differentbrains.org/dcd-me-living-with-developmental-coordination-disorder-featuring-julia-futo-edb-237/ )
KAYLA MCKEON – Down syndrome self-advocate, Manager of Grassroots Advocacy for the National Down Syndrome Society (full interview: https://differentbrains.org/the-groundbreaking-lobbyist-with-down-syndrome-featuring-kayla-mckeon-edb-159/ ) To find out more about Kayla’s work, visit: http://kaylamckeon.com/
RYAN LUNDY – Nonverbal Learning Disorder self-advocate, special ambassador for the NVLD Project (full interview: https://differentbrains.org/understanding-nvld-with-ryan-lundy-edb-272/ ) To find out more about the NVLD Project, visit: https://nvldproject.org/
MICHAEL ELLENBOGEN – Dementia self-advocate and author (full interview: https://differentbrains.org/living-with-dementia-with-michael-ellenbogen-edb-286/ ) To find out more about Michael’s work, visit: https://www.linkedin.com/in/%E2%98%85michael%E2%98%85ellenbogen%E2%98%85/
SHAWN SMITH – ADHD and autism self-advocate, entrepreneur, innovator, counsellor, psychotherapist, and CEO of Don’t dis-my-ability consultation services (full interview: https://differentbrains.org/thriving-with-adhd-with-shawn-smith-me-d-ccc-edb-244/ ) To find out more about Shawn’s work, visit: http://www.ddmacs.ca/
PIERRE MARSH – Dyslexia self-advocate, Senior Mediator specialist in Employment and Discrimination (full interview: https://differentbrains.org/where-neurodiversity-meets-racial-diversity-with-pierre-marsh-edb-130/ ) To find out more about Pierre’s work, visit: https://www.linkedin.com/in/pierre-marsh-10118b19/
JACKI EDRY – Complex brain surgery survivor/self-advocate, author (full interview:https://differentbrains.org/neurodiversity-in-israel-with-jacki-edry-edb-256/ ) To find out more about Jacki’s work, visit: https://www.jackisbooks.com/
BEA MOISE – ADHD self-advocate, autism mom, cognitive specialist, and parenting coach (full interview: https://differentbrains.org/navigating-a-neurodiverse-household-with-bea-moise-ms-bccs-edb-282/ ) To find out more about Bea’s work, visit: https://beatricemoise.com/
JUDE MORROW – Autism self-advocate, author, and speaker (full interview: https://differentbrains.org/loving-your-place-on-the-spectrum-with-jude-morrow-edb-258/ ) To find out more about Jude’s work, visit: https://judemorrow.com/
JR REED – Autism self-advocate, speaker, ASD Consultant, Certified Cognitive Behavioral Therapist, and writer (full interview: https://differentbrains.org/not-weird-just-autistic-with-j-r-reed-edb-242/ ) To find out more about JR’s work, visit: http://notweirdjustautistic.com/
AUDIO PODCAST VERSION:
Or look for us on your favorite podcast provider:
iTunes | Stitcher | SoundCloud
FULL TRANSCRIPTION
Note: the following transcription was automatically generated. Some imperfections may exist.
DR HACKIE REITMAN (HR): Welcome to a special episode of Exploring Different Brains, I’m Dr Hackie Reitman. At Different Brains, we consider neurodiversity to include intellectual and developmental differences, mental health challenges, and neurological issues. So today for our 300th episode, we want to look at the varied diagnoses that fall under that umbrella, as well as get some thoughts from self-advocates on what it means to be neurodivergent.
Let’s start with Tourette Syndrome self-advocate Tara Lerman (TL).
TL: I wish people knew that, you know, not everyone with Tourette’s is what you see in the media, what you see kind of on TV, I think there’s a lot of jokes around it. But you know, to those of us who have it, it’s, you know, it can be funny when we’re when we’re making fun of ourselves, but it’s not, you know, it’s not something to laugh at, in it. It is a serious condition. Some people have kind of different tics, more severe tics, some people have less severe tics, you know, there’s no one size fits all. So, you know, you might have a friend with Tourette’s, but that’s, you know, you might need another person who doesn’t have Tourette. So, you know, really just knowing that it’s a complex disorder, but also, you know, it can give, give people who have it really interesting kind of attributes as well, I would say, I’m more creative because of it, I have more empathy because of it. So you know, as many frustrations as there are, there’s also kind of little, you know, really good things about it, too.
Different Brains intern Michael Tollefsrud (MT).
HR: What is one piece of advice you might have for somebody with misophonia as to how to deal with it?
MT: Well, the best piece of advice, I think… Here’s a big question, actually, for the hypothetical. Do they know that misophonia is a thing? Or do they just think that they’re crazy, because if they haven’t heard of it, I can tell you from experience that finding out that it’s a thing other people have it. That in itself is a huge, like, vindication that makes a big release belief. But, uh, so assuming that they already know that misophonia exists, I think the best advice I could suggest would be to find some find a coping mechanism that works for you. And there’s a bunch of them, I tend to go with the, like I mentioned the earplugs. But I’ve also heard good things about using headphones with noise generators that you can control with, like an app on your phone. And so that way, it just sort of drowns out. it like being in a restaurant, you can still hear but it drowns out the nitty gritty of the trigger.
Different Brains intern Preston Fitzgerald (PF).
PF: I would say the biggest thing will be that: a very small amount of people that have this that have tuberous sclerosis, are unable to speak for themselves, or do or do a walk or talk or say how they feel so… I would say that if you can, you need to express how you feel so we can find more research and find a cure.
Sarah Goldman (SG).
HR: What is the biggest single thing about cerebral palsy you think that people like me are ignorant about?
SG: Cerebral palsy is a tough one. Because there’s such a variety of people that have cerebral palsy, it can range from people that are unable to speak all the way to people who are able to walk independently, with just a slight limp. And I’m somewhere in the middle, you know, I am able to work and, and drive a car, which I’m so thankful for. But I also rely completely on assistance for, you know, activities of daily living and I’m unable to get myself out of bed. So it’s, I fall somewhere in the middle of the spectrum. And I think that people probably just don’t realize that, you know, they don’t realize the wide variety of, of what cerebral palsy is and how people can differ on their abilities. So that I would say that’s the biggest misperception of CP.
Different Brains intern Julia Futo (JF).
JF: So, one thing I want people to know about developmental coordination disorder: It often overlaps with conditions such as ADHD or autism. So it really matters to get to know us on a personal level and to pay attention to If we miss milestones because that is one big giveaway to if you have developmental coordination disorder and not autism, which is mutually exclusive to developmental coordination disorder or something else.
Kayla McKeon (KM).
HR: Tell us, Kayla, what is one great misconception about Down syndrome that you’d like to tell our audience that they might have the wrong idea about.
KM: Well, there’s just one, I’m just kidding! But the biggest one would be that we are not capable of doing anything; but you don’t have to look far, because people with Down Syndrome are doing the same thing as everyone else. Did you see that young lady golfer that was able to make it past a sand trap? That had to be difficult; and- or John Cronin from John’s crazy socks, he owns a multi-million dollar company with his dad, and he’s a multi-millionaire! And we are holding down everyday jobs, and we are ready and willing and able to walk and have a career because we can drive a car, we can go to college, and we don’t want to be paid pennies to do the same job as somebody else. we are living proof of that.
Ryan Lundy (RL).
HR: What is one thing that you wish that everyone knew about nonverbal learning disorder — NVLD?
RL: One thing is, I wish that there would be more of an acceptance of it. People have not heard of it, meaning people think it’s really — you’re nonverbal, you’re not allowed to speak you can’t speak so it’s like a misconception of it. So I really want people to not take that misconception and really look into what exactly what it is and accepted for who it is and not try to say oh, it’s something else. But it’s that’s what it is.
Michael Ellenbogen (ME).
HR: To the average Joe on the street. Who’s right now, if I asked them about Alzheimer’s or dementia, what might you think might be their biggest misconception about the whole thing? ME: They all tend to think that somebody who’s got Alzheimer’s or some type of dementia is somebody who’s in a wheelchair, unable to move with their head back. And, you know, just sitting there. And that’s so far from the truth, because so many of us have so many good years left, that can be utilized in good ways to help society. And if we were just given the chance and opportunity, we could do so much more. But the sad part is, they don’t feel that we should still be around in the workforce, you know, especially if you’re a doctor or lawyer, you know, they think, oh, that you’re liability? Well, we would be if we were by ourselves, but there’s no reason why we can’t be paired with somebody. And there’s a lot of knowledge that can be passed on from a person like myself. I mean, I used to be top notch in my business and so many people could have learned from me and stuff to shut me out. And I there’s so much that I could have taught so many new people in this industry. Yes, I get it. I can’t — there’s no way I could do it myself today. But there’s also no reason why I could not be paired with somebody to work and still continue to be a part of society and still continue to help out.
Shawn Smith (SS).
HR: Now, would you like to just for our audience, for those out there who may think they might have some ADHD and they’re not sure, they’re not sure about getting assessed, they might be any age. What’s your advice to them?
SS: Well, the first thing that I tell people when they disclose that they have ADHD, or they think they have ADHD is: Welcome to the world of the uniquely gifted. This isn’t what’s wrong with you, this is what’s right about you. And so when, when people are on the fence about getting assessed, you know, I encourage a lot of people to get assessed, you know, you’re gonna learn a lot about your thought process, you’re gonna learn about a lot about your strengths and some challenges. I think for a lot of people, it really is the “a ha” moment that helps provide a little clarity and validates a lot of their feelings and thoughts that they’ve had.
Pierre Marsh (PM).
PM: The question is, functionality: how good are we doing our jobs? That to me is the most fundamental point. The second point is, it’s a question of intelligence. Right, and one of the things about neurodivergence is it is intelligence in its own right and I believe that neurodivergent people for a long time have to translate their intelligence to a neurotypical way of doing things. So the burden is absolutely immense but the intelligence grows because of that process. One of the things I think which neurodivergence has to develop into is that there was a specific way of measuring neurodivergent intelligence for neurodivergence intelligence sake. And that was a more holestic way of actually a fair amount of how people actually do things. There’s no point at the age of three, teaching a neurodivergent sequential thinking development, when all the time, their ability to create and learn and understand the world is from a holestic perspective. And so what happens is that child fails, fails, fails, fails, fails, gets the labels, gets the remedial training and then gets the low self esteem and all the time, it becomes because it’s with professionals, it becomes not a difference, it becomes articulated as a pathology. And it’s from that discourse that there was absolutely no challenge to it. And that’s why it’s so important for neurodivergent people. It’s the start from what you say. It’s not a question of looking from a issue of difference and deficit, it’s a process of identifying that there are different brains that process information differently and what we gotta do as humanity is capitalize on the whole sum of human intelligence in order so we can benefit from it because I believe we are in some what of a crisis mode where we’ve gotten so used to doing things from standard operational procedures and historically those who had quite a good working memory to remember the standard operational procedures became the bosses and the leaders , but it’s all taken us to one place, which is not giving us choice. Choice of thought, choice of creativity, and I think it’s the neurodivergent’s brain, which is the key, here to give humanity options which it hasn’t got at the moment. So it’s very important.
Jacki Edry (JE).
JE: I wish everyone would realize that we’re all different. And that’s what makes the world a wonderful place. And that everyone will be given an opportunity. And if people realize that, stop being so judgmental, that you know, a person is difficult to communicate, that doesn’t mean that they don’t, they don’t have somebody to you, and start trying to categorize people, you know, most people get diagnosed. And parents also for professionals, there’s one message I would like to give to professionals. Like, stop taking away hope from from parents, you know, a lot of professionals are sort of abusive this week outcome. My you know, your son will never talk, or you can’t do this or that. Nobody knows, nobody knows anything. And I think nobody about Norwich, city really understands. And like, and they’re always in a rush, the person has to progress. You know, from the time kids are in school, they start timing how quickly they read or how quickly they they take a test or whatever it is, and are in no rush out of chance not making progress quickly enough. And so they you know, like, slow down and see that everyone’s different. And the journey is what makes the difference. The journey, it doesn’t matter how quickly, anyone’s regressing. They just need to keep moving forward. Making sure that the person is is happy, trying to you know, parents or professionals just need to become scientist socialities, to look at the person and try and figure out what’s making that person do that. What’s difficult, how can I help? How can I understand this, but everyday observing that person and seeing what’s changed. And understanding that there are no quick fixes, retraining, cognition, overcoming sensory challenges, or things that take a long time. You cannot do them behaviorally in the year. They take years. But once the foundations are laid, if you retreat, if you’re organizing someone’s cognitive abilities, and it takes years to do that, but once that that foundation is set, then there is no limit to where the person can go.
Bea Moise (BM).
HR: As a parenting coach, one of your jobs, what is the one thing that you think is the most important advice you give? If you had to pick one thing?
BM: I am going to sound like a broken record. Because I say this every time I’m asked this question, I answer it the exact same way. And it is acceptance. Once you accept the child that you have, it is a game changer. Once you recognize that this is what you have, this is who you have. This is the child that you have. This is the learning style that they have, once you accept it, all the pieces just come together, I think the reason I was able to thrive as much as I could with ADHD, my mom just accepted my quirkiness. And just really, I think she made excuses for it like, oh, that’s just Beatrice. That’s just Beatrice. So I really never felt like it was a bad thing. It was just yeah, that’s just who I am. So I’ve taken the same approach with my children. And the number one advice I think I try to drill into all of my clients head is the acceptance piece is what children are looking for. Because once they know you accept them for who they are, and how they are. Everything else is cake.
Jude Morrow (JM).
JM: I think there’s a — I don’t know if it’s a flaw or an unrealistic expectation — that in every field of human endeavor, people try to find the solution, the one size fits all, whether that’s, you know, the theory of matter, or whatever, and every science, every kind of mode of health and social care, people want the one answer, but with the kind of neurodiversity community that doesn’t really exist, where everybody is so varied, and so different. And I mean, as humans, we tend to compartmentalize people, which is a really awful trade, we’re the only species in the animal kingdom that does it. And it’s probably why we will probably have arrived last onto the planet, and probably leave first, kind of there’ll be so many other species that are much kinder to each other that will love way, way longer than us. And I suppose, if I’m trying to find a one size fits all solution for everybody, and my futile effort to try it, it’s the closest I’ve come to is trying to work with people to remove their unconscious negative bias. Because even for anybody listening to this generically, whenever you think of autism, if I say, what is the first thing you think of when you think of autism, you got all the usual stuff, you get all the usual, you know, non speaking, doesn’t like socialize, and doesn’t like communicating with people, and so on and so on. But it’s sad that that’s where people’s brains no matter how different they are, by and large, they go to a negative space, where I mean, my goal it’s taking on any stage or writing any book, or doing any interview like this is trying to help people remove that unconscious negative bias, because that’s ultimately as well as holding the community who proudly wield their different brains back where that that is the main challenge that we face. And I mean, that was another kind of sub inspiration of wire route love in your place in the spectrum because to show that we are a talented and gifted bunch of people, and that should be prioritized over what I suppose society feels we can do in comparison to her peers.
Now lets end with some words of wisdom from JR Reed (JR).
JR: The one thing I would want to say is, you know, be loud and proud about who you are. Don’t try to hide who you are. If you’re neurodivergent, if you’re autistic, whatever it is. You know what, don’t try to hide it from people. Share it with people. Let them see what it is to be an autistic person in the world today.
