The US Autism Association, with Dr Marlo Payne Thurman | EDB 246

 

Dr. Marlo Payne Thurman shares how the US Autism Association is helping the autism community.

(VIDEO – 19 mins) Marlo Payne Thurman, Ph.D. began her professional career working with children diagnosed with autism in 1986. In 1999 Marlo founded the Brideun Learning Communities and built the Brideun School for Exceptional Children, a play-based, therapeutic school exclusively serving children grades 1-8 who were identified as “twice-exceptional.” With doctoral-level training in both School Psychology and Special Education Marlo founded 2E Consulting Services to provide assessments, advocacy, and training to support both individuals and programs working with neurodiverse, twice exceptional, and students with autism. In January of 2020, Marlo was  appointed as the Director and Board Chairman for the US Autism Association. Their mission is to provide opportunity for all individuals with Autism Spectrum Disorders to achieve their fullest potential by expanding and enriching the ASD community through education, online training, published and electronic information and resources, and partnerships with local and national projects.

The US Autism Association’s 2021 World Autism Conference and Gala is happening September 23rd-25th. The Different Brains audience can get $10 off the conference by using the promo code DIFFERENTBRAINS when registering here: https://worldautismconference.org/ 

For more about The US Autism Association: https://www.usautism.org/ 

 

 

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FULL TRANSCRIPTION


HACKIE REITMAN, MD (HR):  

Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we’re lucky to have with us coming all the way from Denver, Colorado. The Big Cheese, the head of the US Autism Association, Marla Thurman. Marlo, welcome.

MARLO PAYNE THURMAN, PhD (MT):  

Thank you. It’s a pleasure to be here Hackie.

HR:  

And thanks for you all you do for those of us with different brains, what you’ve been at it a long time. Why don’t you introduce yourself properly along with your degrees and your titles and what you’re doing.

MT:  

Marlo Payne Thurman, I am an old school school psychologist, I got my first degree, as a school psychologist and have worked as a school psychologist in private practice for a lot of years. About 10 years ago, I made the decision to go back and get a second kind of doctoral level degree, got a PhD, and special education because I really wanted to teach but I didn’t want to teach assessment, I wanted to teach the teachers. So I went back and got a PhD there. I’m taught at the University of Northern Colorado for a while, in addition to my private practice work, where I do assessment, advocacy, consultation, that kind of stuff. And then, um, as you know, we had about four years ago, Larry Kaplan, the president of the US Autism Association, kind of made the decision that he was ready to retire and pass that torch and kind of thought that maybe he’d just close US Autism. I was like, wait, wait, we can’t close US Autism. We have to leave that open. And since nobody else was, like, you know, running to the front of the line, I kind of, yeah, I kind of got roped into that or talk myself into that. So I’m actually the new president of the US Autism Association and chairman of the board for that organization, in addition to my other full time jobs, it’s been kind of a busy year for me, but yeah, that’s my background.

HR:  

I would say so you know, when, when I used to give a keynote out there once in a while for you guys, Larry, and Phil, the mayor would always make fun of me, because I was the only one out there would be on these panels, but really has no professional degree in any of this. I just kind of got into this by accident. So they would purposely put me on these panels with real experts, and then kind of make fun of…

MT:  

You’re pretty knowledgeable. So I’ve heard you speak.

HR:  

But my MD, I’m an orthopaedic surgeon. I remember one time US Autism, you guys must add 1000 people there. I don’t remember if it was an Oregon or where it was. And I was on a panel about marijuana and cannabis. Okay. And Phil was the moderator. And I said, Why don’t you put me on this way, you’re an MD you go, you’ll know what to say. And I’m sitting there with real experts. And, um, you know, at the beginning, you introduce yourself for a couple of minutes and, and, and everybody’s getting polite applause and the guy next to me was Dr. Ronnie Wong, I think. Nice Guy, very scholarly and all and he says, Well, you know, while it’s true that some my classmates and at the University of Chicago smoked too much marijuana and flunked out. It’s really a benign thing and we should be able to use it and seizures and everything else, so then Phil goes to me gone full Dr. Reitman and your vast experience that you tell us new things. He said, Well, first of all, let me tell this audience that unlike Dr. Ronald Wong and his classmates who smoke too much marijuana and they float back a couple of them flunked out. My classmates and I at Boston University. We all smoke too much marijuana but we graduated.

MT:  

Well, good for you. Kinda like Larry always refers to me as the most colorful member of our advisory board. Like I don’t think that’s a good thing, Larry.

HR:  

But I did appreciate you know, and say that, you know, I think it’s should be illegal, immoral and unethical to refuse these autistic individuals. We’re having intractable seizures and they can’t get better by any other way to at least try them. This is a few years ago, so I don’t know where exactly is it now with the marijuana and cannabis and everything?

MT:  

Well, CBD is legal in all 50 states and I’m certainly not the expert. I live in a green state where, in fact people move to Colorado to put their kids on CBD and THC based products for the treatment and they get into Charlotte’s Web, which is the strain that they use to treat seizure disorder kind of came out of Colorado, it’s a really specialty high, high, high CBD strain that does a good job of controlling seizures for certain kids that actually came out of Colorado. So when those laws very first started changing, Colorado was one of the early states that legalize that for children. 

HR:  

You guys out there have always been forward thinking. How did you guys adapt and fare through the pandemic?

MT:  

Kinda like everybody else, it was a crapshoot, right like some, some people did really well, some people really dropped off the grid, I noticed that in my practice, the kinds of kids that really struggled are the kids who had auditory processing disorders. And with that whole online learning environment, these were kids who might have been getting all A’s or B’s, and now they’re failing every single class and they can’t figure out why. And when you pin them right down, they were never heard the directions, they were always just watching the other kids to figure out what to do. And then they didn’t have that other kid group. So the online kids, some of our online kids have done very poorly. In Colorado, we have, you know, some of our families do have some resources. And so they had some nice co ops that came out of the pandemic, in terms of educational co Ops, where groups of kids would get together and kind of create a cohort and, you know, kind of quarantine together if anybody got sick, but they were kind of CO teaching. And so there’s some interesting kind of CO teaching models that came out. But I would say for the most part, the educational system really got smacked. And the kids who got hurt the worst are some of our most significant needs to the point that, you know, some of our kids on the spectrum, especially some of our really affected kids, were really not even in school, and nothing was being done because they couldn’t really get online or weren’t online. And so was just kind of, I think, by the end of, you know, the kind of second semester of last, and then the spring of this last year, some of them are actually going into special ed classrooms for some of their services. But I definitely heard a lot of those families who really just kind of got shuffled under the rug during the pandemic. And it was unfortunately, some of our most significant kids that were already so far behind were the kids who really took the beating the hardest, I think.

HR:  

Well, you know that lost time… we noticed here in Broward County, Florida, Fort Lauderdale, like at the hackie reitman Boys and Girls Club. We really, really stepped up several years ago, our summer programs, because summertime, the kids who lose our grade level have to have reading, you know, it was in their homes and they were underserved, you know, was and of course in the neuro diverse population, they need more, even more than just individual attention. They need the socialization, they need the regimentation, they need to get out of the house. These are the things they are lacking. And it’s very, very tough times.

MT:  

And you know, a lot of these kids are really not even getting their therapies. So their speech therapy, their occupational therapy, some of those, you know, really directed services, were really there was no way to deliver those. And like I say, some schools to be fair, um, some of the schools did pretty good. Robin Brewer, who’s a member of our advisory board of us autism, she was kind of overseeing some services through Denver Public Schools. And they were actually trying to figure out some really integrative and unique ways of serving kids, even if that meant getting people in their car and driving to the kid’s house to provide some services. So there was some really good things happening. But by and large, it’s the pie only slice is so thin, right? There’s only so much money and so much resource. And I think that so many of our kids, just, you know, kind of that they weren’t the squeaky wheel, so they kind of just slipped under the rug.

HR:  

You have your big conference coming up, and tell us how you’re going to run that conference and tell us about it, and how people can get involved with it.

MT:  

Absolutely. I’m excited to share we actually started by the way, it was all COVID. So we were actually supposed to be in a face to face club conference in Boston. So we had all the prep work and legwork done for that, that got shut down. And so then we started kind of an online year long kind of conference model to kind of carry those people who had really registered for the face to face conference. Give them something during COVID. And so then what we did is we started curating content through kind of a talk show style interview, much like what we’re doing here rather than presentations. I hate those, you know, stare at your screen, look at my PowerPoint behind me presentations, I think they’re awful. So we kind of created a model of online, kind of online conference where we’re actually going through all of our different speakers and interviewing them, and curating video content and editing that professionally. So it’s a nice and clean and we don’t have all that zoom video glitching that we sometimes get. And we kind of just built content, we kind of focus just on building content during the pandemic, because that’s something we could all do. And everybody was locked in their house anyway, so we could get them recorded. And so what’s happening now is we’re taking that your long content in some of that is stuff that’s been about half of it is stuff that’s already been up. Probably another half of that is stuff that the audience has never seen. And we are selling that as a weekend long three day online conference. We’re really excited about that, because we have kind of some neat, unique features. We’ve got a voices across the spectrum panel, that’s going to be a live webinar. And that’s five individuals who are diagnosed and they’re going to be — we have Theresa Wrangham, you’ve been with her and know that she’s an excellent moderators, she’s going to share kind of voices across the spectrum. And really kind of the questions you never wanted, never knew you could ask them first, right and get an answer. So it’s really kind of just that very dynamic, interactive, kind of kick off. And then we have, um, 30 plus hours of QA of conference content, that is all kind of packed into these, you know, two and a half days, we have a special event on the second night of the conference. That’s a diversity that’s talking about diversity in the workplace, and kind of really recognizing the need for diversity and all that we do. So yeah, we’re just really excited. We’ve got the biomed stuff, we’ve got the occupational therapy, we’ve got speech, we’ve got some really kind of interesting stuff on cognition. Stephen Shore did a really great panel, a series for us that was approaches in autism. And he interviewed all of the kind of key founders and some of these founding members. So the Millers, he called up the Miller family. So on the Miller method, he called the Miller family and interviewed them as part of a webinar series. So we’ve got Miller, we’ve got already I got certs, we’ve got, you know, kind of this whole realm of approaches in autism from the mouths of the people who are kind of top in their field. And that’s a really neat, a neat series because it compares and contrasts those different airventure methods. So really, a lot of content we had a lot of time this is, in some ways, maybe our best collection of content ever, because we had a whole year and a half with nothing better to do, but they’re recorded. So now we’re selling that and trying to get information out about that conference, because we really do have some phenomenal speakers. 

HR:  

Is there anything you’d like to discuss that we have not discussed today? 

MT:  

I’ll share my my new passion project. 

HR:  

Let’s hear it. Let’s hear it.

MT:  

I am working. I’m kind of in a well, what happened is one of my clients came to me a few months ago and said, I was at a gifted kids conference, and was told that autism and giftedness are mutually exclusive. And I was like, Really? Are you kidding? And so I’ve kind of been curating content specifically on this topic of intelligence in autism, with the idea that, you know, it’s very possible that not only are people with autism, not intellectually disabled, may even though they may not test well on an IQ test, but it’s very possible that we’re seeing some relationships between the the people, you know, families of familial higher intelligence, that those are the families who also have the brother, the sister, the aunt and the cousin on the autism spectrum. And so I’m in the process of working on a few of those kinds of things. And it’s been kind of fun, because I’ve been working with several different people who share this belief that there is some innate relationship between kind of high intelligence and autism, maybe to the point that that becomes the learning style that is the neurodiversity that sets people with autism up to be then more sensitive and more susceptible to injury and toxins from the environment. You and I’ve talked about some of that stuff before. So it’s kind of my new little, my new little stick is trying to play around with that idea to dispel the myth of (lack of) intelligence in autism.

HR:  

You know, what I think is is that you’re you’re touching on the spectrum, I don’t just mean autism spectrum.

MT:  

No the whole spectrum of nice neurodiversity.

HR:  

Yeah. And like I tell a lot of our interns, or we’re mentoring, I say, Look, you’re a lot smarter than me. I said, That’s nothing to be proud of. It’s what you do with it. What are you gonna do with it? Okay, if you’re going to sit at home and play video games, right, like, you know, let’s, let’s figure out what we can harness. What do you like doing, and then figure out how to harness them to it. And if you think about it, you can usually find something and then they do excel. And it’s very, very gratifying. If people would like to learn more, what website should they go to? 

MT:  

USAutism.org. us 

HR:  

USAutism.org, That’s easy. What’s the one thing you would like people to know about the US Autism Association?

MT:  

Hackie, I think the thing that about US Autism that is so special is that it’s a family of professionals and individuals who are affected, who have kids on the spectrum and who truly live and breathe autism. And I think that’s very unique in the national autism conference world.

HR:  

What do you see as the biggest roadblock to society’s acceptance of autism?

MT:  

That’s a hard question. Because I think the biggest roadblock is that — it’s this whole idea that people… it’s okay to be neurodiverse as long as you’re working to get better. Right? In other words, your job is to be like “us”, the “normal people”. And I think that so many times, that’s really the problem is that the “normal people” are failing to entirely accept that neurodiversity is a continuum of which we all have a place to live. And that our goal is not to be the same. Our goal is to embrace that difference, and really figure out how to really support all individuals across the entire spectrum of neurodiversity.

HR:  

Very well said, especially with the so called gifted individual. They’re gifted their brains are a little bit smarter than mine. Let’s harness them to what they love doing a good job doing what will help society up them earn a living and help others.

MT:  

Absolutely, and so much wasted intellectual potential, by not really addressing the needs of difference. And so in other words, by trying to normalize you and fix you and make you more or less neurodiverse. Like that’s even a thing. It’s taking that — that means dumbing you down and making you fit the box and that should not be the goal of society. Our goal society should be to capitalize on difference.

HR:  

It can’t be one size fits all. 

MT:  

Absolutely. 

HR:  

Well. Marlo Thurman, thank you so much for being with us today. Keep up the great work you’re doing it US Autism Association, and come back and visit us soon. Keep up the great work.

MT:  

Absolutely. And thank you so much Hackie, ‘cus I love your work too. And everybody needs to… if you’re not following Hackie’s work you need to.