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Welcome back to Educating the Uniquely Wired Child.
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I'm your host, Dr.
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Kristen Shempy, parent strategist and former behavior specialist, focusing on helping families build systems that actually work for the humans that live inside them.
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Today's conversation is one that I'm really excited about because it's a perspective we really don't talk about a lot.
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I'm joined by Holden Thorpe, a chemist, editor-in-chief of science, and someone who's been increasingly vocal about neurodivergence systems and what it actually takes for people to thrive.
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In this episode, we're talking about a framework that I think every parent and educator needs to hear alignment, adaptation, accommodation.
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Because when those are out of balance, that's when we see kids who are fine at school but falling apart at home.
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And when we get them right, that's when real thriving starts to happen.
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So let's get into it.
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So Holden, you've had a long career in science and education, but more recently you've been speaking about neurodivergence.
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So what shifted for you?
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Yeah, well, first of all, Kristen, thanks so much for having me on.
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And I'm so appreciative of what you're doing to help people understand of the complicated world of autism and neurodiversity.
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And, you know, there's so much, so many different pieces of information flying around out there.
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So for people to have a place where they can get some measured and serious information from somebody like you is really great.
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Well, so I started out life as a as a nerdy kid who may well have gotten a diagnosis of some kind in today's world.
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But in the 1960s, that was not going to happen.
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That's there was no Asperger's then.
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There was no neurodiversity.
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If you were diagnosed as autistic, it would mean that you were self-injurious or nonverbal and had level three autism in today's parlance.
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And fortunately for me, I had resources and I had a family who supported me, and I went to a small parochial school where I went to school with the same 30 kids for nine years.
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And during that time, I never got any bullying.
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And you know, my quirks were very well accepted.
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And so my life proceeded as you might expect for somebody like me who liked to fix things and had serious fixated interests.
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And as your listeners probably have already figured out, a lot of trouble modulating my vocal tone.
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And but but not with any severe difficulties.
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Now, I always say in today's world where people are much more isolated online and where you know the expectations are so much higher.
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And for people who didn't have the resources that I had, I could very uh well have needed diagnosis and been struggling a lot more than I was.
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But I wasn't.
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And I went on to a career in science where I hung around with plenty of people who were like me, and certainly ones who were very, very interested in chemistry.
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And that all worked pretty well until I became the chancellor of the University of North Carolina at Chapel Hill, which since you're coming to the world from the triangle area, will be known to many of your listeners.
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And suddenly I had to do social things that I'd never had to do before.
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And this pushed me from maybe having somebody who had a lot of autistic traits to being someone whose autistic traits were causing them to have a disability.
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I didn't realize that at the time.
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And it was only later when I went to another job at Washington University in St.
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Louis, where I had a psychologist uh do a typical management review.
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I was the provost of the university, which is a high-ranking job, and people who are in high-ranking jobs often get these kinds of coachingslash psychology reviews.
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And in that it came out that I was on the spectrum.
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And I sense, you know, that sent me into the world of autism.
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I didn't disclose my diagnosis for six years.
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I came up with euphemisms about how I was hard to read or how, you know, I didn't always pick up on things.
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But then the last two years or so, I met a lot of people from the neurodiversity world, learned to say things like high support needs and low support needs, and realized that telling my story might be useful to a lot of people.
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And then I got very interested in, of course, now autism is one of my fixated interests.
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And so I got very interested in all the details of this, and got a book coming out hopefully next year from HarperCollins, which will is tentatively called Leading with Autism, but it'll be mostly for people who are like me, kind of in the range of having a lot of autistic traits and wondering whether that's causing a disability that needs a diagnosis or not.
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But I certainly will be paying a lot of tribute to people who don't have the luxury of deciding whether they need a diagnosis or or being able to talk about it, those who have much more, much higher support needs than I do.
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And so I'm hoping it'll be a very balanced take on the whole thing, but we'll see how the world reacts when it comes out.
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Interesting.
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So I so I have a question, and we're gonna we're gonna dig deeper into this, but my initial question is do you think that, because it sounds like that you had a world where you fit in and you found a career that matched your personality and your interest.
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Do you think that if you had never taken the chancellor role, do you think maybe you wouldn't have ever found out about your autism?
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Yeah, I maybe not.
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I mean, I guess it would depend on what else I would have decided to do.
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But as a chemistry professor, talking to other chemistry professors, no, I don't think that I don't think it would have happened in the same way, that's for sure.
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I mean, when I started disclosing talking about being autistic, I mean, when I first got my diagnosis, I was pretty shocked.
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And my wife was, you know, as she always is, she's very, and again, people in the triangle area will know a lot about her.
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She's very interpersonally fluent and complimentary to me in every respect.
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And, you know, she was mostly trying to get me off the ledge.
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But when I asked her about it later, she said that she was really taken aback by how surprised I was.
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Because to her it was just something that uh had been around for a long time.
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And my daughter's a social worker who has an MSW and is, you know, she's not supposed to diagnose her family, but she's qualified to think about such things, and she has a very similar attitude about it.
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My my my family has has felt that I was autistic for a long time, and and many of my close friends said things when I started talking about this, like, well, I'm really glad you know this now.
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So it probably would have come out some other way, but it may maybe not with as much public spectacle and as as many difficulties as as I ended up having.
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Right.
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And to think about you know, you you did have that situation where, you know, you were in a high-ranking university position where you were afforded that opportunity for that counseling.
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And most people don't have that, right?
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So they are probably in jobs that might not match and and struggling and having absolutely no idea, you know, why.
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Yeah, I'm hoping my book and the other things that I do will transfer the privilege that I've had to get that kind of thing to people who haven't.
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But you're absolutely right that the number of people struggling with this very thing, even if they had the the wherewithal to get services, the the the profession that is providing those services is already overwhelmed and can't possibly take care of everybody that's out there.
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And so that's why getting the word out on podcasts like yours and and things that are cheaper to access than a professional therapist to help you with this is crucially important because the number of people who need this kind of information is growing faster than the psychology industry can keep up with.
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Well, and I would, and I want to talk about this more, but what I hope is that we can shift that and start creating environments where all people can be successful instead of the neurodivergent trying to fit into a neurotypical world, which takes us to your framework.
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Your framework talks about alignment, adaptation, and accommodation.
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So can you break that down in a way that parents could actually use that in in real life?
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Yeah, so alignment means, you know, in a in a static sense at a particular time, how do my autistic traits play in the part of the world I'm trying to function in?
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And the good news is that's variable, right?
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So it may be one thing at one time, but lots of if you apply the rest of my framework, you can actually move the kind of thermostat as to where your traits work.
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But at any given time, and for example, for me, I was okay being a chemistry professor, but I had a lot of struggles being a chancellor.
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And, you know, people said things about me at the time that, well, he just doesn't have the people skills for this job, or, you know, he's he's awfully awkward.
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He can't make small talk, and those are all requirements, right?
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And so so the the sort of ableism that comes along comes here in the alignment area where people say, Yeah, I'm sorry, but that's just your personality, and you're just not suited to do this.
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And obviously we need to push against that.
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But it is very real that, you know, outcomes are a product of personality or traits and environment.
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And when the mis when those are mismatched, that causes a lot of challenges for people.
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So that's alignment, and that's what we have to work to try to move so that people can achieve and do the things they want to do.
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Adaptation is what a lot of people think every neurodivergent person should do by themselves or by itself.
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That is, we should all adapt to be part of the neurotypical world.
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And there are prominent autistic spokespeople like Temple Grandin and John Robison who mostly adhere to this.
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You know, they're mostly saying things like, well, autistic kids need to go push themselves and be uncomfortable.
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And then the, you know, and there's some truth to that.
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We want people to push themselves, but not every trait is one that we really ought to adapt to.
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So, for example, you know, people listening to my voice can probably understand this.
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When I was chancellor at UNC, I got lots and lots of very expensive coaching on how to modulate my vocal tone more.
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I went to a very, very expensive consultant who coaches political candidates and stuff.
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And he made me read Casey at the bat on camera.
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And when I finished, he said, that's the flattest thing I've ever heard.
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He said, Now go through and underline a bunch of words.
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It doesn't matter which ones they are, but stress them when you get to them.
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And I did it again, and he said, I can't hear the difference.
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And so, you know, does that really matter, or does it matter what I'm saying?
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And same thing with eye contact.
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Does it really matter if somebody's looking at you, if they're actually listening?
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And, you know, with stimming.
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I mean, I'm not doing it right now, but on long zoom calls, I usually work a Rubik's Cube, not because I am not paying attention, but because I can actually pay attention better.
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Should that matter?
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No.
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But then there are other things that are worth adapting on, you know, and social communication is one of them, is is is learning skills that would allow you to pick up on things better, worth doing, or even better, finding collaborators and friends who can tell you when you're missing things and not picking up on things.
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You know, these are sort of wholesome kinds of adaptation, you know, and for people with very high support needs, you know, behaviors that stop them from being self-injurious, you know, those are probably worth working on.
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And Ari Naaman, who founded the Autism, Autistic Self-Advocacy Network, he likes to talk about trait-specific treatment.
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And I very much embrace that.
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I don't think we need adaptation, adaptation for eye contact and stimming, but I do think there are things that we could benefit from.
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And then accommodation, that is the world accepting that some of our traits are different and might make them uncomfortable, mainly because I think they see us as unpredictable.
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And, you know, one very, very common theme in my life is that I meet somebody for the first time and they say, Man, I really don't know what to think of Holden.
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I can't tell if he's interested in me.
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He seems very aloof.
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And then something will happen, like, you know, something bad will happen to him, and I'll be the first person to show up to help them.
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That's happened many, many times when I was in management.
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And they're like, wow, wasn't expecting you to be here to help me.
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And so, you know, what is that due to?
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Well, that is due to them making a first impression uh based on my mannerisms and stuff, that is very negative.
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And Noah Sassin at UT Dallas did a series of experiments where he showed that neurotypical people form first impressions of autistic people within a few seconds at most.
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And mostly that's negative unless they know a lot more about autism than they do.
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And so to get to more accommodation of some of our traits that don't need adapting, you know, we've got to educate a lot more people who are outside the autism world about this.
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And so once you put these three things on a triangle, now you can go back and forth and go around in different directions.
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And as you do that, the alignment of somebody's traits with the things that they can aspire to do continues to improve because now some of their mannerisms aren't disqualifying for the things that they want to do.
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And some of them that matter, they've learned ways to adapt to without giving up who they are as people.
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And hopefully this is a scheme by which people either who have a lot of autistic traits but not a diagnosis want to improve on, or for people who have level one autism but not an intellectual disability, and this is a framework for them too.
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So that's kind of my mission in life to frame these things and to explain a lot of the science behind how it works.
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Right.
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And so as a parent, I like the the triangle idea.
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So thinking as a parent, you know, I think the the the biggest takeaway from your framework is that, you know, not everything needs to change.
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I think that we really have to like eye contact and and you know, uh quote unquote paying attention, you know, what is uh what what is okay and what we have traditionally thought of as uh okay might not work for everybody, right?
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So you you mentioned the Rubik's Cube uh during a during a meeting and how uh like some people might think that that's rude if that you're not, you know, that your attention isn't focused on, you know, the meeting, but that's uh that's the wrong that's the wrong assumption.
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So I think parents, if they're looking at this triangle, I hope what they can see the most is everything doesn't need to change.
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So, you know, where where are areas that you know uh you can uh be your true self because that's uh that's important to to value.
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Um because if you're constantly changing, then you're you're not being your true authentic self.
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Um and the the last episode that I recorded was with the author of Girls and Women on the Autism Spectrum, and she used the analogy of a job interview.
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We were talking about masking, and she said, you know, when you're in a job interview, you because what what she hears is everybody masks, you know, everybody does that.
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So it it's not and she used the example of a job interview and how you you you're you're putting your best self out there, but you're only doing that for an hour.
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But imagine having to mask like that all day, every day, and not not having anyone that you know says, hey, you know, not making eye contact is okay.
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Right?
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Like, you know, doing something else during a meeting, that's okay.
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So I think I hope that's what parents can take away from from this conversation.
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Um but now it's Yeah, and this is where just one other thing on that, this is where the la label of autism becomes crucial to to kind of make a decision about because you know, before I told the world I was autistic, I would never have been caught working a Rubik's Cube on a long Zoom call.
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But now that everybody knows I'm autistic, then I don't feel bad about it anymore.
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And so that's freeing for that's freeing for me.
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The problem is not everybody is a 60-plus year old guy who's close to retirement, who has plenty of financial resources, who can get away with telling the world that he's autistic and not suffer any consequences from that.
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And that's another thing where we just really have to pull together as a society.
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And for women and girls, as you're pointing out, it's such a big deal.
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I mean, I'm the editor of science.
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I handle scientific information for a living.
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I'm a nerdy white male who was the first person to solve the Rubik's Cube on national television.
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No one is surprised that I'm autistic.
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But if I was a woman or if I was a person of color or from any other marginalized group, then people would feel very differently about that because they're expecting Sheldon Cooper or Lorraine Man or whoever it is, and not just somebody who doesn't look like them and me.
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Absolutely.
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And congrats on the Rubik's Cube thing.
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My son was huge into cubes and he would take them on flights and stuff, and everybody was always, you know, like he had like all the like three by threes and you know, all the all the different ones.
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So it was um definitely an interest of his growing up.
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Yeah, well, I was one of the old guys from the 80s, if he wants to look me up.
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So he'll follow me.
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Yes, I will definitely, he will, he will definitely be uh interested in probably that would be the most interested thing he would have from this conversation, but that's okay.
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So, but okay, so what I've seen, and I guess this is where I struggle with very The need to adapt because I've seen in classrooms where when the environment shifts, everyone can be successful and not just neurodivergent kids.
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I did I when I did school consulting, I was on the district's autism team.
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And so we were all trained in social thinking by Michelle Garcia Winter.
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And her methodology is, you know, when you are in a group, you have to think about other people.
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And when you're not in a group, you can just think about yourself.
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And when you do things that are expected, people feel comfortable around you.
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And when you do things that are unexpected, it makes people feel uncomfortable.
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And so what we and so we designed a lot of behavioral interventions tied to that methodology.
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And it really helped the kiddos on the spectrum understand the why behind what that baby like why was that behavior expected in a particular setting.
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But what we what we did further was we we saw how many kids, other than just the kids on the spectrum, benefited from understanding that why.
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Right.
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And and and a lot of kids benefited from understanding the why.
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I mean, there are kids that will behave the way they're supposed to because they want to stay on green or they want to get a sticker, but it's much more meaningful when you understand the why behind what you're being asked to do.
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And so we took that methodology and made it a part of the school-wide positive behavior support.
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So we got rid of those stupid stoplights where you're on green, yellow, or red, and had the entire school speaking the same language.
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And I'll never forget the principal was observing one of our lessons and it was a kindergarten classroom.
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And so the kids were fighting over crayons.
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And she leaned down to the table.
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So instead of saying, you know, Johnny, go move your, you know, clip to yellow because you're not listening or not sharing, she leaned down and said, What would a thinking about others kid do right now?
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And they stopped and looked at her like, How do you know that?
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But because you're not in this room every day.
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And one of them said, There are two green crayons.
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So I can have this one and my friend can have the other green crayon.
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So they sat there, they problem solved and they fixed the problem without being corrected.
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And it and it was so what I have seen when you can create environments like that, you know, it it truly does benefit everyone.
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And discipline referrals went down, the uh the social and emotional ratings on report cards improved.
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There were so many benefits to that approach.
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But it took, you know, one uh administrator willing to put in that work.
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And most administrator, well, in fact, the administrator after her when she took her position, she wanted the school to be STEM focused and she she wrote us out of the school improvement plan.
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So but do you see that in like in a larger system, like how we can create environments that benefit everyone and not just not just the neurodivergent?
00:25:44.319 --> 00:25:44.559
Yeah.
00:25:44.799 --> 00:25:58.960
So I should have mentioned this when we were talking about accommodation, but we should all be standing on the rooftop shouting as loud as we can that making the world better for neurodivergent people is going to make the world better for everybody.
00:25:59.200 --> 00:26:12.720
And yeah, I mean, there's a leadership writer named Ludmilla Preslova who wrote a book called The Canary Code, which is about making the workplace better for autistic folks.
00:26:12.799 --> 00:26:24.799
And it's called the Canary Code because her thesis is that if if the if your workplace isn't good for autistic people, then eventually it's going to be bad for everybody.
00:26:25.039 --> 00:26:34.559
And so knowing that your workplace isn't good for neurodivergent folks is a way to fix it before it messes up everyone.
00:26:34.880 --> 00:26:46.240
And, you know, some good examples of this are, I mean, maybe the best example in the business world is that autistic people want really, really precise instructions.
00:26:46.720 --> 00:26:53.039
I mean, almost any time somebody asks me to do something, I think what they're saying is vague.
00:26:53.279 --> 00:26:57.200
And, you know, they're not telling me what success is going to look like.
00:26:57.359 --> 00:27:04.880
They're not telling me the precise way they want it, they're not telling me who's going to be held responsible if it doesn't work.
00:27:05.039 --> 00:27:11.359
You know, I've I've got so many questions that I can wear people down with it.
00:27:11.839 --> 00:27:23.440
But people who study high reliability organizations who worry about things like safety in operating rooms or in the airlines and stuff like that.
00:27:24.400 --> 00:27:40.400
You know, they initially started with the idea that we should have mindfulness and that everybody should be able to read the room and communicate so that if somebody sees something that's going to be dangerous, they could they could feel f confident to speak up.
00:27:40.720 --> 00:28:05.200
Well, many of those scholars have now changed their mind and realized after working with autistic people that what is better is to have absolutely explicit, precise directions and protocols for everyone, that that's better than selecting for people who can intuit when there's something dangerous and feel comfortable saying something about it.
00:28:05.440 --> 00:28:15.119
And so this precise language isn't just a way to include autistic people in projects.
00:28:15.359 --> 00:28:20.480
It's a way to make them better and safer and more generative for everyone.
00:28:20.880 --> 00:28:25.599
And that is an example that I think we can all understand.
00:28:25.759 --> 00:28:30.160
You know, there's also kind of just the whole thing about group projects.
00:28:30.400 --> 00:28:40.319
You know, I never would have been able to get a master's in business administration because all those group projects would have caused me to melt down.
00:28:41.039 --> 00:28:58.079
And but I asked a lot of experts about this, and they all said, yeah, the problem is that most of these group projects, the the expectations and everything are just so vague that the autistic folks don't know when they're supposed to engage.
00:28:58.319 --> 00:29:11.119
And so the solution to that is to break it down into smaller chunks and to have better communication about, you know, for me, I'm always the person in the group project who's going to rattle off all the ways that it could go wrong.
00:29:11.839 --> 00:29:17.119
And that's really important, okay, because there are plenty of ways that it could go wrong.
00:29:17.359 --> 00:29:22.079
On the other hand, not everybody wants to spend the entire time hearing about that.
00:29:22.240 --> 00:29:26.079
And some people have intuitive insights that are also useful.
00:29:26.319 --> 00:29:27.279
So what do you do?
00:29:27.440 --> 00:29:33.279
Well, you need a specific time set aside where we're going to go through all the things that could go wrong.
00:29:34.079 --> 00:29:36.240
And too often we don't have that.
00:29:36.400 --> 00:29:51.920
And I mean, I could go through lots of things in the workplace, but you can take these very things and apply them to the classroom by people who are better at pedagogy and education than I am and come up with very similar things that would be good for everyone.
00:29:52.480 --> 00:29:52.720
Right.
00:29:52.880 --> 00:29:59.839
And I to your point, you know, more clear instructions that's that's better for all, right?
00:30:00.000 --> 00:30:01.920
It's um absolutely.
00:30:02.480 --> 00:30:17.440
So I asked a friend who was someone who was also diagnosed as an adult, and she was diagnosed by way of her child who was diagnosed in middle school, and she's a very strong advocate.
00:30:17.599 --> 00:30:23.359
And I asked her what what would she want to ask you, like neurodivergent to neurodivergent?
00:30:23.759 --> 00:30:39.039
And you know, I so one of her questions, which is is one that I would be interested in as well, is what has been the most challenging aspect of sharing your autistic truth with neurotypical people.
00:30:41.200 --> 00:30:41.519
Yeah.
00:30:41.680 --> 00:30:47.119
So, first of all, this is the most common thing that I get people coming to me about.
00:30:47.359 --> 00:30:54.640
My kid got a diagnosis, and now I'm thinking I'm on the spectrum and I'm wondering what to do about that.
00:30:54.799 --> 00:31:01.759
That is, if you looked in my inbox at all the emails I get, I bet 75% of them are like that.
00:31:02.559 --> 00:31:05.839
And so this is a really, really common experience.
00:31:06.079 --> 00:31:16.319
I think the most challenging thing for me is, and again, I'm at a very stable and highly privileged part of my life.
00:31:16.480 --> 00:31:20.960
I'm hopefully in my last job, last full-time job.
00:31:21.200 --> 00:31:23.200
I've had a lot of other great jobs.
00:31:23.359 --> 00:31:27.839
I've got very little risk associated with doing this.
00:31:28.160 --> 00:31:30.400
And a lot of people have a lot more.
00:31:31.519 --> 00:31:40.480
So the kind of blowback that a lot of people could get in the workplace and things like that, that hasn't been something for me.
00:31:40.640 --> 00:31:42.559
And but those things are real.
00:31:42.640 --> 00:31:45.200
I mean, I have a lot of stories from people.
00:31:45.359 --> 00:31:55.440
I mean, I heard one story from somebody who disclosed her autism in the workplace, and then somebody used the fact that she didn't put pick up on things to kind of manipulate her.
00:31:55.680 --> 00:32:05.200
And so, yeah, and and of course, there are many other stories about how, you know, people when they disclose they have problems with insurance and things like that.
00:32:05.440 --> 00:32:08.559
So there's a lot of dangers with disclosing.
00:32:08.640 --> 00:32:19.920
But I think the hardest thing for me is just cutting through all the noise that's out there about autism and what's up with it.
00:32:20.000 --> 00:32:38.079
And I tend to sit somewhat in the middle, closer to the neurodiversity rights crowd, probably by a little bit, but I have nothing but the highest admiration for parents who are taking care of children who have high support needs and adults.
00:32:38.160 --> 00:32:39.680
I mean, that's even harder.
00:32:40.400 --> 00:32:54.799
And, you know, I believe, you know, on the on in one part of my life, I sign off on papers that are doing very specific research on autism and the brain and the genetics and how it all happens.
00:32:54.960 --> 00:33:14.880
And I think it's also true that autism is a spectrum and that there are traits that are conserved all the way from people with very high support needs to people like me who are, you know, where we're debating whether autism is a disability or or just part of our personality.
00:33:15.359 --> 00:33:17.680
And, you know, I believe all those things are true.
00:33:17.839 --> 00:33:27.599
But there are a lot of very entrenched people either side of this who, you know, are pretty difficult to cut through.
00:33:27.839 --> 00:33:48.799
And so I think just the disagreement, which I find to be pretty unfortunate, and the dogmatic way that some people can be on social media or and by the way, some of the people who are dogmatic about neurodiversity rights, for example, on social media, when I interview them, they're much more conciliatory.
00:33:49.039 --> 00:33:51.279
And same thing with the parents on the other side.
00:33:51.440 --> 00:34:11.199
They'll they'll they'll admit that that uh level one autism is still a very something for which people need a lot of support, even though they may be also saying at the same time that that those folks have taken s taken resources away from people with level three autism.
00:34:11.519 --> 00:34:17.440
So I guess the the noise level and the disagreement is kind of the hardest thing for me.
00:34:17.679 --> 00:34:24.239
But I guess I'm also encouraged by the fact that when I dig into it with people, there's not as much disagreement out there as you might think.
00:34:24.719 --> 00:34:25.039
Right.
00:34:25.199 --> 00:34:37.599
And it's it's so easy, I mean, across the board to have very strong feelings when you're behind that keyboard versus having a conversation with a person one-on-one.
00:34:38.320 --> 00:35:06.159
And I hope that, you know, with things like your book, this podcast, that by increasing that awareness, then it will become less risky for for people to for people to disclose because you know, not everyone is in a position to find a job that, you know, matches their intense interests or personality.
00:35:06.400 --> 00:35:11.280
But I think that with more awareness, we we can get there.
00:35:11.920 --> 00:35:14.800
So that I guess that would be my my hope.
00:35:15.039 --> 00:35:20.639
Maybe it's too Pollyanna, but that is my that is my hope that we that that we get there.
00:35:20.719 --> 00:35:23.599
Because we've we've got we've got we've gotten far.
00:35:23.760 --> 00:35:39.360
You know, we are we're moving away from, you know, where I would say 10 years ago, one of my really good friends, her daughter ended up getting diagnosed uh after an emergency psych visit.
00:35:39.920 --> 00:35:44.960
And to, you know, it's we we've got to do better than that, right?
00:35:45.199 --> 00:35:54.079
Because uh, you know, in my mind, I think how many people didn't make it to the ER, you know, um to in order to get that diagnosis.
00:35:54.239 --> 00:36:04.480
And so that's that's my hope is that we can just increase that awareness and uh lower the risks of uh of disclosing.
00:36:06.400 --> 00:36:07.119
Absolutely.
00:36:07.280 --> 00:36:38.960
Yeah, and I think we also ought to be optimistic about what autistic people can do for the world and already have, but you know, the stereotype that says that a leader is somebody who's slaps you on the back and and you know tunes in with you and and gets up and gives a rousing speech that may or may not have anything to do with the actual content of what they're saying.
00:36:39.199 --> 00:36:47.039
You know, that's the paradigm that we've that's the paradigm that we've used certainly in America for most of our history.
00:36:47.280 --> 00:37:18.079
And you know, we continue to select for leaders who have these traits when most of our problems are very, very detail-oriented, and where most of the things that we need to do to solve the huge challenges that we're facing in the world require analysis and focus and the kinds of things and obsession, frankly, with with different topics, which which which we're all quite good at.
00:37:18.480 --> 00:37:26.639
We need to make work room for these folks not just to help the the alpha dogs, but actually to be in charge.
00:37:26.960 --> 00:37:35.280
Because if we were, then other people with different kinds of mannerisms and ways of thinking would flourish more.
00:37:35.599 --> 00:37:54.960
And, you know, we might we will have more precise instructions and more things where we actually act based on details and and that that world can be a lot better than the one that we have, where we're constantly selecting for performance rather than for substance.
00:37:55.679 --> 00:37:56.320
Absolutely.
00:37:56.480 --> 00:37:57.519
I like that a lot.
00:37:57.760 --> 00:38:00.239
Well, this was this was a great conversation.
00:38:00.559 --> 00:38:05.840
Parents, if this conversation gave you something to think about, then you're definitely not alone.
00:38:06.079 --> 00:38:10.559
This is the kind of shift that changes how you see everything.
00:38:10.800 --> 00:38:23.920
And if you want more support building systems that actually help your child thrive, not just get through the day, you can find resources, our parent community, and ways to work together and links in the show notes.
00:38:24.000 --> 00:38:33.119
And if this episode resonated with you, please share it with someone who needs to hear it because this isn't just about one kind of learner.
00:38:33.199 --> 00:38:34.239
It's about everyone.
00:38:34.400 --> 00:38:38.639
It's about building environments where all humans can thrive.
00:38:38.880 --> 00:38:41.199
So thanks for being here.
00:00:15.359 --> 00:00:19.199
Welcome back to Educating the Uniquely Wired Child.
00:00:19.359 --> 00:00:20.399
I'm your host, Dr.
00:00:20.480 --> 00:00:31.839
Kristen Shempy, parent strategist and former behavior specialist, focusing on helping families build systems that actually work for the humans that live inside them.
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Today's conversation is one that I'm really excited about because it's a perspective we really don't talk about a lot.
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I'm joined by Holden Thorpe, a chemist, editor-in-chief of science, and someone who's been increasingly vocal about neurodivergence systems and what it actually takes for people to thrive.
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In this episode, we're talking about a framework that I think every parent and educator needs to hear alignment, adaptation, accommodation.
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Because when those are out of balance, that's when we see kids who are fine at school but falling apart at home.
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And when we get them right, that's when real thriving starts to happen.
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So let's get into it.
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So Holden, you've had a long career in science and education, but more recently you've been speaking about neurodivergence.
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So what shifted for you?
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Yeah, well, first of all, Kristen, thanks so much for having me on.
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And I'm so appreciative of what you're doing to help people understand of the complicated world of autism and neurodiversity.
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And, you know, there's so much, so many different pieces of information flying around out there.
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So for people to have a place where they can get some measured and serious information from somebody like you is really great.
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Well, so I started out life as a as a nerdy kid who may well have gotten a diagnosis of some kind in today's world.
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But in the 1960s, that was not going to happen.
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That's there was no Asperger's then.
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There was no neurodiversity.
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If you were diagnosed as autistic, it would mean that you were self-injurious or nonverbal and had level three autism in today's parlance.
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And fortunately for me, I had resources and I had a family who supported me, and I went to a small parochial school where I went to school with the same 30 kids for nine years.
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And during that time, I never got any bullying.
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And you know, my quirks were very well accepted.
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And so my life proceeded as you might expect for somebody like me who liked to fix things and had serious fixated interests.
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And as your listeners probably have already figured out, a lot of trouble modulating my vocal tone.
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And but but not with any severe difficulties.
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Now, I always say in today's world where people are much more isolated online and where you know the expectations are so much higher.
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And for people who didn't have the resources that I had, I could very uh well have needed diagnosis and been struggling a lot more than I was.
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But I wasn't.
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And I went on to a career in science where I hung around with plenty of people who were like me, and certainly ones who were very, very interested in chemistry.
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And that all worked pretty well until I became the chancellor of the University of North Carolina at Chapel Hill, which since you're coming to the world from the triangle area, will be known to many of your listeners.
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And suddenly I had to do social things that I'd never had to do before.
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And this pushed me from maybe having somebody who had a lot of autistic traits to being someone whose autistic traits were causing them to have a disability.
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I didn't realize that at the time.
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And it was only later when I went to another job at Washington University in St.
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Louis, where I had a psychologist uh do a typical management review.
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I was the provost of the university, which is a high-ranking job, and people who are in high-ranking jobs often get these kinds of coachingslash psychology reviews.
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And in that it came out that I was on the spectrum.
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And I sense, you know, that sent me into the world of autism.
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I didn't disclose my diagnosis for six years.
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I came up with euphemisms about how I was hard to read or how, you know, I didn't always pick up on things.
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But then the last two years or so, I met a lot of people from the neurodiversity world, learned to say things like high support needs and low support needs, and realized that telling my story might be useful to a lot of people.
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And then I got very interested in, of course, now autism is one of my fixated interests.
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And so I got very interested in all the details of this, and got a book coming out hopefully next year from HarperCollins, which will is tentatively called Leading with Autism, but it'll be mostly for people who are like me, kind of in the range of having a lot of autistic traits and wondering whether that's causing a disability that needs a diagnosis or not.
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But I certainly will be paying a lot of tribute to people who don't have the luxury of deciding whether they need a diagnosis or or being able to talk about it, those who have much more, much higher support needs than I do.
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And so I'm hoping it'll be a very balanced take on the whole thing, but we'll see how the world reacts when it comes out.
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Interesting.
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So I so I have a question, and we're gonna we're gonna dig deeper into this, but my initial question is do you think that, because it sounds like that you had a world where you fit in and you found a career that matched your personality and your interest.
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Do you think that if you had never taken the chancellor role, do you think maybe you wouldn't have ever found out about your autism?
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Yeah, I maybe not.
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I mean, I guess it would depend on what else I would have decided to do.
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But as a chemistry professor, talking to other chemistry professors, no, I don't think that I don't think it would have happened in the same way, that's for sure.
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I mean, when I started disclosing talking about being autistic, I mean, when I first got my diagnosis, I was pretty shocked.
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And my wife was, you know, as she always is, she's very, and again, people in the triangle area will know a lot about her.
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She's very interpersonally fluent and complimentary to me in every respect.
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And, you know, she was mostly trying to get me off the ledge.
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But when I asked her about it later, she said that she was really taken aback by how surprised I was.
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Because to her it was just something that uh had been around for a long time.
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And my daughter's a social worker who has an MSW and is, you know, she's not supposed to diagnose her family, but she's qualified to think about such things, and she has a very similar attitude about it.
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My my my family has has felt that I was autistic for a long time, and and many of my close friends said things when I started talking about this, like, well, I'm really glad you know this now.
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So it probably would have come out some other way, but it may maybe not with as much public spectacle and as as many difficulties as as I ended up having.
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Right.
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And to think about you know, you you did have that situation where, you know, you were in a high-ranking university position where you were afforded that opportunity for that counseling.
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And most people don't have that, right?
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So they are probably in jobs that might not match and and struggling and having absolutely no idea, you know, why.
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Yeah, I'm hoping my book and the other things that I do will transfer the privilege that I've had to get that kind of thing to people who haven't.
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But you're absolutely right that the number of people struggling with this very thing, even if they had the the wherewithal to get services, the the the profession that is providing those services is already overwhelmed and can't possibly take care of everybody that's out there.
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And so that's why getting the word out on podcasts like yours and and things that are cheaper to access than a professional therapist to help you with this is crucially important because the number of people who need this kind of information is growing faster than the psychology industry can keep up with.
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Well, and I would, and I want to talk about this more, but what I hope is that we can shift that and start creating environments where all people can be successful instead of the neurodivergent trying to fit into a neurotypical world, which takes us to your framework.
00:10:16.960 --> 00:10:22.000
Your framework talks about alignment, adaptation, and accommodation.
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So can you break that down in a way that parents could actually use that in in real life?
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Yeah, so alignment means, you know, in a in a static sense at a particular time, how do my autistic traits play in the part of the world I'm trying to function in?
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And the good news is that's variable, right?
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So it may be one thing at one time, but lots of if you apply the rest of my framework, you can actually move the kind of thermostat as to where your traits work.
00:11:00.080 --> 00:11:09.200
But at any given time, and for example, for me, I was okay being a chemistry professor, but I had a lot of struggles being a chancellor.
00:11:09.440 --> 00:11:19.360
And, you know, people said things about me at the time that, well, he just doesn't have the people skills for this job, or, you know, he's he's awfully awkward.
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He can't make small talk, and those are all requirements, right?
00:11:24.320 --> 00:11:37.200
And so so the the sort of ableism that comes along comes here in the alignment area where people say, Yeah, I'm sorry, but that's just your personality, and you're just not suited to do this.
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And obviously we need to push against that.
00:11:39.759 --> 00:11:49.279
But it is very real that, you know, outcomes are a product of personality or traits and environment.
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And when the mis when those are mismatched, that causes a lot of challenges for people.
00:11:54.960 --> 00:12:01.679
So that's alignment, and that's what we have to work to try to move so that people can achieve and do the things they want to do.
00:12:02.000 --> 00:12:11.200
Adaptation is what a lot of people think every neurodivergent person should do by themselves or by itself.
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That is, we should all adapt to be part of the neurotypical world.
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And there are prominent autistic spokespeople like Temple Grandin and John Robison who mostly adhere to this.
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You know, they're mostly saying things like, well, autistic kids need to go push themselves and be uncomfortable.
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And then the, you know, and there's some truth to that.
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We want people to push themselves, but not every trait is one that we really ought to adapt to.
00:12:45.279 --> 00:12:51.919
So, for example, you know, people listening to my voice can probably understand this.
00:12:52.080 --> 00:12:59.679
When I was chancellor at UNC, I got lots and lots of very expensive coaching on how to modulate my vocal tone more.
00:12:59.919 --> 00:13:06.080
I went to a very, very expensive consultant who coaches political candidates and stuff.
00:13:06.159 --> 00:13:10.720
And he made me read Casey at the bat on camera.
00:13:11.120 --> 00:13:14.960
And when I finished, he said, that's the flattest thing I've ever heard.
00:13:15.120 --> 00:13:18.080
He said, Now go through and underline a bunch of words.
00:13:18.159 --> 00:13:22.240
It doesn't matter which ones they are, but stress them when you get to them.
00:13:22.480 --> 00:13:25.679
And I did it again, and he said, I can't hear the difference.
00:13:26.000 --> 00:13:30.960
And so, you know, does that really matter, or does it matter what I'm saying?
00:13:31.200 --> 00:13:33.440
And same thing with eye contact.
00:13:33.679 --> 00:13:37.679
Does it really matter if somebody's looking at you, if they're actually listening?
00:13:37.919 --> 00:13:39.679
And, you know, with stimming.
00:13:39.840 --> 00:13:50.639
I mean, I'm not doing it right now, but on long zoom calls, I usually work a Rubik's Cube, not because I am not paying attention, but because I can actually pay attention better.
00:13:51.440 --> 00:13:52.320
Should that matter?
00:13:52.559 --> 00:13:52.879
No.
00:13:53.039 --> 00:14:18.240
But then there are other things that are worth adapting on, you know, and social communication is one of them, is is is learning skills that would allow you to pick up on things better, worth doing, or even better, finding collaborators and friends who can tell you when you're missing things and not picking up on things.
00:14:18.399 --> 00:14:32.320
You know, these are sort of wholesome kinds of adaptation, you know, and for people with very high support needs, you know, behaviors that stop them from being self-injurious, you know, those are probably worth working on.
00:14:32.399 --> 00:14:43.759
And Ari Naaman, who founded the Autism, Autistic Self-Advocacy Network, he likes to talk about trait-specific treatment.
00:14:44.240 --> 00:14:46.480
And I very much embrace that.
00:14:46.720 --> 00:14:56.879
I don't think we need adaptation, adaptation for eye contact and stimming, but I do think there are things that we could benefit from.
00:14:57.120 --> 00:15:08.320
And then accommodation, that is the world accepting that some of our traits are different and might make them uncomfortable, mainly because I think they see us as unpredictable.
00:15:08.960 --> 00:15:18.960
And, you know, one very, very common theme in my life is that I meet somebody for the first time and they say, Man, I really don't know what to think of Holden.
00:15:19.279 --> 00:15:21.440
I can't tell if he's interested in me.
00:15:21.759 --> 00:15:23.759
He seems very aloof.
00:15:24.159 --> 00:15:31.759
And then something will happen, like, you know, something bad will happen to him, and I'll be the first person to show up to help them.
00:15:31.919 --> 00:15:34.639
That's happened many, many times when I was in management.
00:15:34.799 --> 00:15:39.279
And they're like, wow, wasn't expecting you to be here to help me.
00:15:39.519 --> 00:15:41.600
And so, you know, what is that due to?
00:15:41.759 --> 00:15:48.559
Well, that is due to them making a first impression uh based on my mannerisms and stuff, that is very negative.
00:15:48.720 --> 00:16:02.480
And Noah Sassin at UT Dallas did a series of experiments where he showed that neurotypical people form first impressions of autistic people within a few seconds at most.
00:16:02.879 --> 00:16:08.720
And mostly that's negative unless they know a lot more about autism than they do.
00:16:09.200 --> 00:16:24.960
And so to get to more accommodation of some of our traits that don't need adapting, you know, we've got to educate a lot more people who are outside the autism world about this.
00:16:25.120 --> 00:16:33.200
And so once you put these three things on a triangle, now you can go back and forth and go around in different directions.
00:16:33.440 --> 00:16:48.799
And as you do that, the alignment of somebody's traits with the things that they can aspire to do continues to improve because now some of their mannerisms aren't disqualifying for the things that they want to do.
00:16:48.960 --> 00:16:56.799
And some of them that matter, they've learned ways to adapt to without giving up who they are as people.
00:16:57.200 --> 00:17:15.279
And hopefully this is a scheme by which people either who have a lot of autistic traits but not a diagnosis want to improve on, or for people who have level one autism but not an intellectual disability, and this is a framework for them too.
00:17:15.519 --> 00:17:24.799
So that's kind of my mission in life to frame these things and to explain a lot of the science behind how it works.
00:17:25.200 --> 00:17:25.519
Right.
00:17:25.680 --> 00:17:28.240
And so as a parent, I like the the triangle idea.
00:17:28.400 --> 00:17:40.640
So thinking as a parent, you know, I think the the the biggest takeaway from your framework is that, you know, not everything needs to change.
00:17:40.880 --> 00:18:00.880
I think that we really have to like eye contact and and you know, uh quote unquote paying attention, you know, what is uh what what is okay and what we have traditionally thought of as uh okay might not work for everybody, right?
00:18:01.039 --> 00:18:16.240
So you you mentioned the Rubik's Cube uh during a during a meeting and how uh like some people might think that that's rude if that you're not, you know, that your attention isn't focused on, you know, the meeting, but that's uh that's the wrong that's the wrong assumption.
00:18:16.400 --> 00:18:27.440
So I think parents, if they're looking at this triangle, I hope what they can see the most is everything doesn't need to change.
00:18:27.759 --> 00:18:39.279
So, you know, where where are areas that you know uh you can uh be your true self because that's uh that's important to to value.
00:18:39.440 --> 00:18:47.200
Um because if you're constantly changing, then you're you're not being your true authentic self.
00:18:47.440 --> 00:19:00.960
Um and the the last episode that I recorded was with the author of Girls and Women on the Autism Spectrum, and she used the analogy of a job interview.
00:19:01.200 --> 00:19:11.279
We were talking about masking, and she said, you know, when you're in a job interview, you because what what she hears is everybody masks, you know, everybody does that.
00:19:11.359 --> 00:19:22.880
So it it's not and she used the example of a job interview and how you you you're you're putting your best self out there, but you're only doing that for an hour.
00:19:23.440 --> 00:19:37.599
But imagine having to mask like that all day, every day, and not not having anyone that you know says, hey, you know, not making eye contact is okay.
00:19:38.000 --> 00:19:38.319
Right?
00:19:38.480 --> 00:19:42.240
Like, you know, doing something else during a meeting, that's okay.
00:19:42.960 --> 00:19:48.960
So I think I hope that's what parents can take away from from this conversation.
00:19:49.359 --> 00:20:11.759
Um but now it's Yeah, and this is where just one other thing on that, this is where the la label of autism becomes crucial to to kind of make a decision about because you know, before I told the world I was autistic, I would never have been caught working a Rubik's Cube on a long Zoom call.
00:20:12.079 --> 00:20:18.400
But now that everybody knows I'm autistic, then I don't feel bad about it anymore.
00:20:18.559 --> 00:20:21.759
And so that's freeing for that's freeing for me.
00:20:22.000 --> 00:20:35.440
The problem is not everybody is a 60-plus year old guy who's close to retirement, who has plenty of financial resources, who can get away with telling the world that he's autistic and not suffer any consequences from that.
00:20:35.680 --> 00:20:40.160
And that's another thing where we just really have to pull together as a society.
00:20:40.240 --> 00:20:44.640
And for women and girls, as you're pointing out, it's such a big deal.
00:20:44.720 --> 00:20:46.799
I mean, I'm the editor of science.
00:20:47.039 --> 00:20:50.000
I handle scientific information for a living.
00:20:50.160 --> 00:20:55.039
I'm a nerdy white male who was the first person to solve the Rubik's Cube on national television.
00:20:55.200 --> 00:20:57.519
No one is surprised that I'm autistic.
00:20:57.839 --> 00:21:16.480
But if I was a woman or if I was a person of color or from any other marginalized group, then people would feel very differently about that because they're expecting Sheldon Cooper or Lorraine Man or whoever it is, and not just somebody who doesn't look like them and me.
00:21:17.680 --> 00:21:18.640
Absolutely.
00:21:18.880 --> 00:21:20.960
And congrats on the Rubik's Cube thing.
00:21:21.039 --> 00:21:34.240
My son was huge into cubes and he would take them on flights and stuff, and everybody was always, you know, like he had like all the like three by threes and you know, all the all the different ones.
00:21:34.319 --> 00:21:37.039
So it was um definitely an interest of his growing up.
00:21:37.359 --> 00:21:41.119
Yeah, well, I was one of the old guys from the 80s, if he wants to look me up.
00:21:41.200 --> 00:21:42.240
So he'll follow me.
00:21:42.799 --> 00:21:50.319
Yes, I will definitely, he will, he will definitely be uh interested in probably that would be the most interested thing he would have from this conversation, but that's okay.
00:21:52.480 --> 00:22:14.960
So, but okay, so what I've seen, and I guess this is where I struggle with very The need to adapt because I've seen in classrooms where when the environment shifts, everyone can be successful and not just neurodivergent kids.
00:22:15.200 --> 00:22:20.640
I did I when I did school consulting, I was on the district's autism team.
00:22:20.720 --> 00:22:25.119
And so we were all trained in social thinking by Michelle Garcia Winter.
00:22:25.839 --> 00:22:33.440
And her methodology is, you know, when you are in a group, you have to think about other people.
00:22:33.519 --> 00:22:37.279
And when you're not in a group, you can just think about yourself.
00:22:37.519 --> 00:22:41.839
And when you do things that are expected, people feel comfortable around you.
00:22:41.920 --> 00:22:46.240
And when you do things that are unexpected, it makes people feel uncomfortable.
00:22:46.480 --> 00:22:53.759
And so what we and so we designed a lot of behavioral interventions tied to that methodology.
00:22:54.000 --> 00:23:06.480
And it really helped the kiddos on the spectrum understand the why behind what that baby like why was that behavior expected in a particular setting.
00:23:06.720 --> 00:23:19.200
But what we what we did further was we we saw how many kids, other than just the kids on the spectrum, benefited from understanding that why.
00:23:19.680 --> 00:23:20.000
Right.
00:23:20.079 --> 00:23:24.400
And and and a lot of kids benefited from understanding the why.
00:23:24.559 --> 00:23:39.200
I mean, there are kids that will behave the way they're supposed to because they want to stay on green or they want to get a sticker, but it's much more meaningful when you understand the why behind what you're being asked to do.
00:23:39.359 --> 00:23:47.039
And so we took that methodology and made it a part of the school-wide positive behavior support.
00:23:47.200 --> 00:23:57.839
So we got rid of those stupid stoplights where you're on green, yellow, or red, and had the entire school speaking the same language.
00:23:58.079 --> 00:24:05.759
And I'll never forget the principal was observing one of our lessons and it was a kindergarten classroom.
00:24:05.839 --> 00:24:08.799
And so the kids were fighting over crayons.
00:24:09.200 --> 00:24:11.039
And she leaned down to the table.
00:24:11.200 --> 00:24:23.279
So instead of saying, you know, Johnny, go move your, you know, clip to yellow because you're not listening or not sharing, she leaned down and said, What would a thinking about others kid do right now?
00:24:24.079 --> 00:24:27.759
And they stopped and looked at her like, How do you know that?
00:24:27.920 --> 00:24:30.240
But because you're not in this room every day.
00:24:30.480 --> 00:24:34.319
And one of them said, There are two green crayons.
00:24:34.400 --> 00:24:37.279
So I can have this one and my friend can have the other green crayon.
00:24:37.839 --> 00:24:44.960
So they sat there, they problem solved and they fixed the problem without being corrected.
00:24:45.680 --> 00:24:56.480
And it and it was so what I have seen when you can create environments like that, you know, it it truly does benefit everyone.
00:24:56.720 --> 00:25:05.039
And discipline referrals went down, the uh the social and emotional ratings on report cards improved.
00:25:05.279 --> 00:25:08.960
There were so many benefits to that approach.
00:25:09.200 --> 00:25:16.240
But it took, you know, one uh administrator willing to put in that work.
00:25:16.640 --> 00:25:30.000
And most administrator, well, in fact, the administrator after her when she took her position, she wanted the school to be STEM focused and she she wrote us out of the school improvement plan.
00:25:30.240 --> 00:25:43.440
So but do you see that in like in a larger system, like how we can create environments that benefit everyone and not just not just the neurodivergent?
00:25:44.319 --> 00:25:44.559
Yeah.
00:25:44.799 --> 00:25:58.960
So I should have mentioned this when we were talking about accommodation, but we should all be standing on the rooftop shouting as loud as we can that making the world better for neurodivergent people is going to make the world better for everybody.
00:25:59.200 --> 00:26:12.720
And yeah, I mean, there's a leadership writer named Ludmilla Preslova who wrote a book called The Canary Code, which is about making the workplace better for autistic folks.
00:26:12.799 --> 00:26:24.799
And it's called the Canary Code because her thesis is that if if the if your workplace isn't good for autistic people, then eventually it's going to be bad for everybody.
00:26:25.039 --> 00:26:34.559
And so knowing that your workplace isn't good for neurodivergent folks is a way to fix it before it messes up everyone.
00:26:34.880 --> 00:26:46.240
And, you know, some good examples of this are, I mean, maybe the best example in the business world is that autistic people want really, really precise instructions.
00:26:46.720 --> 00:26:53.039
I mean, almost any time somebody asks me to do something, I think what they're saying is vague.
00:26:53.279 --> 00:26:57.200
And, you know, they're not telling me what success is going to look like.
00:26:57.359 --> 00:27:04.880
They're not telling me the precise way they want it, they're not telling me who's going to be held responsible if it doesn't work.
00:27:05.039 --> 00:27:11.359
You know, I've I've got so many questions that I can wear people down with it.
00:27:11.839 --> 00:27:23.440
But people who study high reliability organizations who worry about things like safety in operating rooms or in the airlines and stuff like that.
00:27:24.400 --> 00:27:40.400
You know, they initially started with the idea that we should have mindfulness and that everybody should be able to read the room and communicate so that if somebody sees something that's going to be dangerous, they could they could feel f confident to speak up.
00:27:40.720 --> 00:28:05.200
Well, many of those scholars have now changed their mind and realized after working with autistic people that what is better is to have absolutely explicit, precise directions and protocols for everyone, that that's better than selecting for people who can intuit when there's something dangerous and feel comfortable saying something about it.
00:28:05.440 --> 00:28:15.119
And so this precise language isn't just a way to include autistic people in projects.
00:28:15.359 --> 00:28:20.480
It's a way to make them better and safer and more generative for everyone.
00:28:20.880 --> 00:28:25.599
And that is an example that I think we can all understand.
00:28:25.759 --> 00:28:30.160
You know, there's also kind of just the whole thing about group projects.
00:28:30.400 --> 00:28:40.319
You know, I never would have been able to get a master's in business administration because all those group projects would have caused me to melt down.
00:28:41.039 --> 00:28:58.079
And but I asked a lot of experts about this, and they all said, yeah, the problem is that most of these group projects, the the expectations and everything are just so vague that the autistic folks don't know when they're supposed to engage.
00:28:58.319 --> 00:29:11.119
And so the solution to that is to break it down into smaller chunks and to have better communication about, you know, for me, I'm always the person in the group project who's going to rattle off all the ways that it could go wrong.
00:29:11.839 --> 00:29:17.119
And that's really important, okay, because there are plenty of ways that it could go wrong.
00:29:17.359 --> 00:29:22.079
On the other hand, not everybody wants to spend the entire time hearing about that.
00:29:22.240 --> 00:29:26.079
And some people have intuitive insights that are also useful.
00:29:26.319 --> 00:29:27.279
So what do you do?
00:29:27.440 --> 00:29:33.279
Well, you need a specific time set aside where we're going to go through all the things that could go wrong.
00:29:34.079 --> 00:29:36.240
And too often we don't have that.
00:29:36.400 --> 00:29:51.920
And I mean, I could go through lots of things in the workplace, but you can take these very things and apply them to the classroom by people who are better at pedagogy and education than I am and come up with very similar things that would be good for everyone.
00:29:52.480 --> 00:29:52.720
Right.
00:29:52.880 --> 00:29:59.839
And I to your point, you know, more clear instructions that's that's better for all, right?
00:30:00.000 --> 00:30:01.920
It's um absolutely.
00:30:02.480 --> 00:30:17.440
So I asked a friend who was someone who was also diagnosed as an adult, and she was diagnosed by way of her child who was diagnosed in middle school, and she's a very strong advocate.
00:30:17.599 --> 00:30:23.359
And I asked her what what would she want to ask you, like neurodivergent to neurodivergent?
00:30:23.759 --> 00:30:39.039
And you know, I so one of her questions, which is is one that I would be interested in as well, is what has been the most challenging aspect of sharing your autistic truth with neurotypical people.
00:30:41.200 --> 00:30:41.519
Yeah.
00:30:41.680 --> 00:30:47.119
So, first of all, this is the most common thing that I get people coming to me about.
00:30:47.359 --> 00:30:54.640
My kid got a diagnosis, and now I'm thinking I'm on the spectrum and I'm wondering what to do about that.
00:30:54.799 --> 00:31:01.759
That is, if you looked in my inbox at all the emails I get, I bet 75% of them are like that.
00:31:02.559 --> 00:31:05.839
And so this is a really, really common experience.
00:31:06.079 --> 00:31:16.319
I think the most challenging thing for me is, and again, I'm at a very stable and highly privileged part of my life.
00:31:16.480 --> 00:31:20.960
I'm hopefully in my last job, last full-time job.
00:31:21.200 --> 00:31:23.200
I've had a lot of other great jobs.
00:31:23.359 --> 00:31:27.839
I've got very little risk associated with doing this.
00:31:28.160 --> 00:31:30.400
And a lot of people have a lot more.
00:31:31.519 --> 00:31:40.480
So the kind of blowback that a lot of people could get in the workplace and things like that, that hasn't been something for me.
00:31:40.640 --> 00:31:42.559
And but those things are real.
00:31:42.640 --> 00:31:45.200
I mean, I have a lot of stories from people.
00:31:45.359 --> 00:31:55.440
I mean, I heard one story from somebody who disclosed her autism in the workplace, and then somebody used the fact that she didn't put pick up on things to kind of manipulate her.
00:31:55.680 --> 00:32:05.200
And so, yeah, and and of course, there are many other stories about how, you know, people when they disclose they have problems with insurance and things like that.
00:32:05.440 --> 00:32:08.559
So there's a lot of dangers with disclosing.
00:32:08.640 --> 00:32:19.920
But I think the hardest thing for me is just cutting through all the noise that's out there about autism and what's up with it.
00:32:20.000 --> 00:32:38.079
And I tend to sit somewhat in the middle, closer to the neurodiversity rights crowd, probably by a little bit, but I have nothing but the highest admiration for parents who are taking care of children who have high support needs and adults.
00:32:38.160 --> 00:32:39.680
I mean, that's even harder.
00:32:40.400 --> 00:32:54.799
And, you know, I believe, you know, on the on in one part of my life, I sign off on papers that are doing very specific research on autism and the brain and the genetics and how it all happens.
00:32:54.960 --> 00:33:14.880
And I think it's also true that autism is a spectrum and that there are traits that are conserved all the way from people with very high support needs to people like me who are, you know, where we're debating whether autism is a disability or or just part of our personality.
00:33:15.359 --> 00:33:17.680
And, you know, I believe all those things are true.
00:33:17.839 --> 00:33:27.599
But there are a lot of very entrenched people either side of this who, you know, are pretty difficult to cut through.
00:33:27.839 --> 00:33:48.799
And so I think just the disagreement, which I find to be pretty unfortunate, and the dogmatic way that some people can be on social media or and by the way, some of the people who are dogmatic about neurodiversity rights, for example, on social media, when I interview them, they're much more conciliatory.
00:33:49.039 --> 00:33:51.279
And same thing with the parents on the other side.
00:33:51.440 --> 00:34:11.199
They'll they'll they'll admit that that uh level one autism is still a very something for which people need a lot of support, even though they may be also saying at the same time that that those folks have taken s taken resources away from people with level three autism.
00:34:11.519 --> 00:34:17.440
So I guess the the noise level and the disagreement is kind of the hardest thing for me.
00:34:17.679 --> 00:34:24.239
But I guess I'm also encouraged by the fact that when I dig into it with people, there's not as much disagreement out there as you might think.
00:34:24.719 --> 00:34:25.039
Right.
00:34:25.199 --> 00:34:37.599
And it's it's so easy, I mean, across the board to have very strong feelings when you're behind that keyboard versus having a conversation with a person one-on-one.
00:34:38.320 --> 00:35:06.159
And I hope that, you know, with things like your book, this podcast, that by increasing that awareness, then it will become less risky for for people to for people to disclose because you know, not everyone is in a position to find a job that, you know, matches their intense interests or personality.
00:35:06.400 --> 00:35:11.280
But I think that with more awareness, we we can get there.
00:35:11.920 --> 00:35:14.800
So that I guess that would be my my hope.
00:35:15.039 --> 00:35:20.639
Maybe it's too Pollyanna, but that is my that is my hope that we that that we get there.
00:35:20.719 --> 00:35:23.599
Because we've we've got we've got we've gotten far.
00:35:23.760 --> 00:35:39.360
You know, we are we're moving away from, you know, where I would say 10 years ago, one of my really good friends, her daughter ended up getting diagnosed uh after an emergency psych visit.
00:35:39.920 --> 00:35:44.960
And to, you know, it's we we've got to do better than that, right?
00:35:45.199 --> 00:35:54.079
Because uh, you know, in my mind, I think how many people didn't make it to the ER, you know, um to in order to get that diagnosis.
00:35:54.239 --> 00:36:04.480
And so that's that's my hope is that we can just increase that awareness and uh lower the risks of uh of disclosing.
00:36:06.400 --> 00:36:07.119
Absolutely.
00:36:07.280 --> 00:36:38.960
Yeah, and I think we also ought to be optimistic about what autistic people can do for the world and already have, but you know, the stereotype that says that a leader is somebody who's slaps you on the back and and you know tunes in with you and and gets up and gives a rousing speech that may or may not have anything to do with the actual content of what they're saying.
00:36:39.199 --> 00:36:47.039
You know, that's the paradigm that we've that's the paradigm that we've used certainly in America for most of our history.
00:36:47.280 --> 00:37:18.079
And you know, we continue to select for leaders who have these traits when most of our problems are very, very detail-oriented, and where most of the things that we need to do to solve the huge challenges that we're facing in the world require analysis and focus and the kinds of things and obsession, frankly, with with different topics, which which which we're all quite good at.
00:37:18.480 --> 00:37:26.639
We need to make work room for these folks not just to help the the alpha dogs, but actually to be in charge.
00:37:26.960 --> 00:37:35.280
Because if we were, then other people with different kinds of mannerisms and ways of thinking would flourish more.
00:37:35.599 --> 00:37:54.960
And, you know, we might we will have more precise instructions and more things where we actually act based on details and and that that world can be a lot better than the one that we have, where we're constantly selecting for performance rather than for substance.
00:37:55.679 --> 00:37:56.320
Absolutely.
00:37:56.480 --> 00:37:57.519
I like that a lot.
00:37:57.760 --> 00:38:00.239
Well, this was this was a great conversation.
00:38:00.559 --> 00:38:05.840
Parents, if this conversation gave you something to think about, then you're definitely not alone.
00:38:06.079 --> 00:38:10.559
This is the kind of shift that changes how you see everything.
00:38:10.800 --> 00:38:23.920
And if you want more support building systems that actually help your child thrive, not just get through the day, you can find resources, our parent community, and ways to work together and links in the show notes.
00:38:24.000 --> 00:38:33.119
And if this episode resonated with you, please share it with someone who needs to hear it because this isn't just about one kind of learner.
00:38:33.199 --> 00:38:34.239
It's about everyone.
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It's about building environments where all humans can thrive.
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So thanks for being here.
