Defining Neurodiversity, with Marcelle Ciampi M.Ed. (Samantha Craft) | Spectrumly Speaking ep. 117
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IN THIS EPISODE:
(AUDIO – 32 minutes) In this episode, hosts Haley Moss and Dr. Lori Butts speak with self-advocate Marcelle Ciampi M.Ed. (Samantha Craft). As you may recall, Marcelle is the author, under the pen name “Samantha Craft”, of the book Everyday Aspergers: A Journey on the Autism Spectrum, as well as a contributing author to the book Spectrum Women: Walking to the Beat of Autism. Her newest manuscript is Autism in a Briefcase: Straight talk about belonging in a neurodiverse world. Marcelle is a business consultant for Fortune 500 companies and the Senior Manager of Diversity, Equity, and Inclusion and Ambassador at Ultranauts Inc., a fully remote engineering firm where 75% of the employees identify with being on the autism spectrum. She’s currently in the doctorate program for organizational leadership with an emphasis on social justice.
For more about Marcelle:
https://www.linkedin.com/in/marcelle-ciampi-aka-samantha-craft-she-her-290a11b6/
http://www.myspectrumsuite.com/
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.
For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com
Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com
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EPISODE TRANSCRIPTION:
HALEY MOSS (HM):
Hello, and welcome to Spectrumly Speaking. I’m Haley Moss, an author, artist, advocate, and I’m autistic. today. I’m joined here by…
DR LORI BUTTS (LB):
Hi, I’m Dr. Lori Butts. I’m a psychologist and an attorney.
HM:
How are you doing?
LB:
Good. How about you?
HM:
Um, good. Happy Friday?
LB:
Yes, yes. Yes. It’s been a very fast week and multitasking not not very well, this week for some reason. So, you know, you have those weeks where things just pile on.
HM:
I feel that too. And I’m kind of not sure how this week has just flown by. But it has. And I’m also a little nervous because I have to go traveling in person this weekend. So yeah, I’m going to a conference in Orlando. So I’m a little nervous. But I’m also excited to see people. It’s definitely going to be a little bit of an adjustment. And I will be certain to report back.
LB:
Yes, yes. Just keep your mask on and your distances. And breathe.
HM:
That is my plan. But the funny thing is, I’ve been to an airport, I think twice during this whole mess. And every time I go, I feel safer, because everybody is very compliant.
LB:
Right. That’s true.
HM:
That everybody it’s not like when I go to the grocery store, and sometimes people wear masks, and sometimes they don’t whenever I go to an airport, nobody really messes with it unless they’re eating. Like people in airports and on airplanes are pretty well behaved. For the most part, I haven’t been on a flight that like got delayed because somebody was acting unruly. But for the most part, people are pretty well behaved. And like, Oh, this is like, organized chaos with a lot of people. But they’ve somehow gotten a situation like, taken care of.
LB:
Right. Right. It’s kind of like we’re all in this together type of situation.
HM:
Kind of comforting in a weird way. And it’s, it’s funny, because in the before times, I used to always love when I got to go on trips for work, or I got to go to conferences. And now I’m like, this is gonna be so strange.
LB:
Yeah. Yeah. It’s always an adjustment. And we’re not doing such a great job in Florida right now.
HM:
I think about this a lot.
LB:
Yeah, I think most people do. It’s, it’s real. And it’s, it’s not easy, trying to figure it all out.
HM:
Yeah. And I could tell that a lot of folks are hopeful for the future and hopeful to be back in person and getting to give hugs again, and all that. So I am hopeful. I don’t want to spend our entire time talking about feelings and hope, or hopeful or if we’re at airports. And I’m sure we can eventually get a guest to talk to us about airports being sensory friendly because our airport has a huge collaboration. And actually, I think a past guest may have been involved in that effort. I have to find out about because Miami International does have a very large sensory room to my understanding. And I know other airports I’ve been to have sensory rooms, but I never actually had time to check them out. But today, we get to have a lot more fun then talking about airports.
LB:
Yes. It’s much more fun.
HM:
Yes. So today we’re welcoming back a friend of the show and someone we really love here at spectrum and speaking at Different Brains. So if you don’t know her, we’re welcoming back Marcelle Ciampi. As you may recall, Marcelle is the author under the pen name Samantha Craft of the book Everyday Asperger’s: a journey on the autism spectrum. Is also a contributing author to the book spectrum women walking to the beat of autism. her newest manuscript is autism in a briefcase straight talk about belonging in a neuro diverse world. Marcel is a business consultant for Fortune 500 companies and the senior manager of Diversity, Equity and Inclusion an ambassador at Ultranauts Inc, a fully remote engineering firm, where 75% of the employees identify with being on the autism spectrum. She’s currently in a doctorate program for organizational leadership with an emphasis on social justice. Welcome to the show.
MARCELLE CIAMPI (MC):
Thank you. Thank you so much for having me back. Again. It’s like getting together with good friends and having enjoyable conversation. I always leave feeling energized. And I can relate to what you were saying about airports. My partner, David and I, we traveled a couple times already. This was last year and it is that mix of reassurance that we’re all in this together, which is very similar to neurodiversity, right. And validating that that people are doing their best to follow those processes and procedures, again, real similar to the topics we’re going to be talking about today, but in a different area, right.
HM:
So how have you been?
MC:
I’ve been pretty good, pretty busy, like most of the people in the world, paying attention to what’s going on with the global health crisis and praying and hoping that people and families are safe and that our children will be able to continue to go to school and listening to other people’s journeys and hoping for the very best.
LB:
I hear that you’ve developed a new way of looking at neuro diversity. Can you tell us about it?
MC:
Oh, sure. So should I explain a little bit about neurodiversity? First in case we have some listeners…
LB:
Sure, absolutely. Yeah.
MC:
So Judy Singer, which I believe we all know she was is a sociologist who resides in Australia, and she is largely recognized for coining the word neurodiversity in her sociology honors theses in the late 1990s. When I had the opportunity to interview her, she told me that she came up with neurodiversity because neurological diversity was too much of a mouthful, which I found delightful. And in a recent call, she explained that neurodiversity has to do with valuing everyone for their contributions. So every single human being and finding roles so we can all be a productive part of organizations or society. It’s about being inclusive for everyone. And it’s a very broad range. We’re all under the neurodiversity umbrella each and every human being. I often joke that it includes everyone but zombies and ghosts and ghosts are debatable whether or not we think they have a living brain in mind. So every single person whether they consider themselves autistic, ADHDer, or similar neurodivergency, or as more typical human brain, human mind, neurotypical, we’re all under this umbrella together similar to how we’re all under this global crisis together and coming together to work with one another and support one another through this. It’s based on bio diversity and how it’s important for us to respect the huge diversity we have on this planet and to treat our animals and our plants and our trees and our air and our water with respect in the same way we can transfer that over to treating every human being on the planet, with respect and considering their needs and, and what helps them to grow and what helps them to flourish. And, and what’s the opposite of that and avoiding that. It’s very, it’s very broad range.
So it can include learning disabilities, neurodevelopmental disorders, and also mood conditions. And it’s expanding and expanding. And when we start to add those numbers all up statistically considering one and four of us will typically have a mood condition in our life. And if we live long enough, all of us will more than likely have a neurological condition as as we age, if we’re fortunate enough to live a long, long life. When we add up all these numbers, considering the percentages of Dyslexics is at least 10% and ADHDers is rising six 8%, as more and more people are diagnosed, it’s really not a minority anymore that we’re talking about, it’s becoming more if you will the norm to have some type of nerdy emergency. But that’s not to minimize the importance that we need to assist people who are neurodivergent or what I like to call it neurovariant. And interestingly enough, like neurovariant like the butterflies and the finches, we look at finches there’s so many different types of birds and there’s so many different types of butterflies within one species and, and to consider all the different varieties and colors and beauties and the different ways they perceive and, and process and present and I call it the three P’s. Neurodiversity being neuro divergent or not just being under that umbrella is about how we perceive how we process and then how we present to the world.
So when your question was about this new term, I’ve been recently working with a fortune 500 company, I’ve been honored and blessed to the next three years, walk them through this journey of neurodiversity and work with a cohort in the United States to bring in more top talent in this untapped group of individuals. And I’ve been doing a lot of thinking and as anybody who’s on the spectrum knows that’s that comes with it. Right. So I’m, let me say that first I’m, I am, was diagnosed Asperger’s Syndrome about 10 years ago. I call myself an autistic individual. And I have several coexisting conditions. Most people on the spectrum do. research says, at least four. I have dyslexia, I’m dyslexic, dyspraxia. I have some OCD traits, I’m getting diagnosed for ADHD. And this is kind of funny, largely because of the last time I talked to you both and I realized how much I was scrolling and going off a branch.
HM:
Did you not realize I squirrel off? Because that should have been a cause for concern or having a conversation with other neurodivergent of course will happen.
MC:
Back to your question as I squirrel again.
HM:
Oh, it’s okay told us that I actually had the exact same kind of lightbulb moment like, yeah, that a lot of this describes Me too. And I was researching my book and talking to people constantly. So I get that.
MC:
Yes, I had a talk with two podcasters who do it, ADHD education. And then one of my children was diagnosed with it. And then I read several books. And then I started watching YouTube’s on how it presents in non males. I’m like, Oh, no, this is me. I’ll add that to my basket. And I say no, not because it’s a negative thing. But like, now I have eight coaches. I just, you know, makes me more unique, more more interesting. I can relate to more and more people. So that’s good. So I have several coexisting conditions beyond my being on the autism spectrum. And, and so because of that, I think a lot so I’m backtracking to where I was last year, picturing myself as a visual thinker walking back, okay, where was I in my brain? My railroad tracks here. So what I’ve come across in the last few years I’ve been studying this I’ve got over 3000 hours in studying this topic now neuro diversity specifically with the workplace. And what I observe is people wanting to put neurodivergent or neuro variant neuro V’s in boxes, and okay, but the ADHD are in this box. This box the autistic in this box, the dysgraphic. In this box, the person with Tourette’s in this box, and I’m like, wait a minute, research shows that most of us have at least four coexisting conditions.
So what are you going to cut me into four parts and put me in four different boxes, or in my case, am I going to be an eight boxes and have eight different workplace plans. And you’ll start to see visuals and charts by well meaning professionals: try this with ADHD ears and do this with dyslexic. So we’ll see the list of strengths, which is fantastic. We want to promote that social model and that positivity and what we can bring to the workplace. But at the same time, it’s counterproductive because if we’re talking about true belonging and true inclusivity, we shouldn’t be segregating and separating people. It should be bringing everyone into one union together. So I’ve put a lot of thought into this. And I don’t know about you both maybe you can respond to this before I continue on but do you ever, like feel like you have a concept or a problem? Haley you probably gonna say Most definitely. On the back burner, and and it’s just simmering there for months and months, and then all of a sudden it’s done cooking.
HM:
Yep. And that was this this kind of thing for you. And then of course, you have like some lightbulb moments and self discovery, some other stuff, or you forgot about it for a couple months, because you’re like, you got busy got sidetracked something else in life takes priority, then you’re like, aha, that other thing that I was thinking about is solved. Got it.
LB:
Yeah, yeah, absolutely. Uh huh. Yeah, I can totally relate. Yeah.
MC:
I’ll get right back to what I was saying. But in a book by John O’Donoghue, which I love I highly recommend. It’s called Soulfriend. It’s Celtic wisdom. He mentioned the author mentions, those who are drawn to extremes are often near to renewal and self discovery. And when I read that, I thought that makes so much sense for a lot of us who are neuro variants that we are drawn to those extremes, but those extremes bring us near to that renewal and self discovery, self renewal and self discovery. So what you said about self discovery, Haley that kind of stuck in my mind. So as I was exploring this, I was playing around with graphics and and also getting over this executive functioning hurdle I had of trying to learn PowerPoint, and move over from Google Drive to PowerPoint.
So I’m playing with all these graphics, and trying to learn how to use these systems, and it very much helped me as a visual learner to start processing this huge concept of how can I personally go about encouraging and supporting people in the workplace encouraging and supporting those that have different minds, and Different Brains who vary from the mainstream norm. And the boxes wasn’t working my business partner and I were trying to say, well, you can help ADHDers with this, you can, you know, help autistics with this. And it’s like, but there’s so much overlap. For me, personally, I have at least 20 ADHD traits as an autistic person. And all of those attributes I have, some of them, I can use the same support as an ADHD or as an autistic person without having an ADHD diagnosis. Similarly gifted intellect. If there’s a great book Living With Intensity, they have similar sensitivities to sensory processing. They have, generally speaking, gifted intellect, I’ve been diagnosed with that as well have social anxiety, they’re often misunderstood. They often suffer with anxieties, or situational depression, there’s many overlaps and we could go down all the different ways that define being a neurodivergent individual and find these overlaps.
So I came up with very recently, force four quadrants in a circle, if you can picture that. And I separated each part one on the top is a sensory processing. On the left hand side, the right hand side is the cognitive processing. And then the third part is the emotional processing. And the fourth part is the physical functioning. And I realized that autistic and ADHDers as neurodevelopmental conditions go right in the middle of those four, and that almost every autistic person is going to have conditions that fall under cognitive such as learning disabilities, that are executive functioning challenges. They’re going to have challenges and gifts as well and talents that fall under each of those four categories. Mood conditions, very high percentage report being generalized anxiety disorder, post traumatic stress disorder. And what’s the other word I’m looking for — depression, those types of mood conditions and the other quadrant contract. I think I’m saying that right, because I have dyslexia, quadrant, the other quadrant, the physical functioning, many of us have the dyspraxia or apraxia or we’re prone for clumsiness. Interestingly enough ADHD ears are as well prone to this clumsiness. So instead of dissecting people, and putting them into boxes, I created four quadrants, and put us into the quadrants. And it’s working out so much better.
Now, when I’m explaining it to people with visuals, you can’t see visuals, so forgive me, of how much these conditions or these ways of being really, because you know, condition is this man made, human made term that we have, how many of these ways have been overlap, because all of a sudden, you can see, alright, ADHDers, and autistics are in all these four quadrants. And people with learning disabilities are right there with us in this upper quadrant, people with mood conditions are right there in that lower quadrant. And then when we start to look at those as well, we start to realize that people with learning disabilities and mood conditions and physical functioning that’s outside the norm, they fit into those other quadrants quite often as well. And it’s my way that I developed so I can get across stop using the boxes. They’re not gonna it’s not gonna work, it’s gonna be too complex. Hopefully you can understand that without the visual
LB:
Absolutely and I think that’s in complete alignment with different brands and what we you know, how we started Different Brains was you know, trying to — that’s the message that we’ve been trying to send and and you’re breaking it down in a practical way to help people. And I mean, that’s kind of been my, my retort are my my kind of thing that I go back to every time we have one of these podcasts when we talk to our great guests who give us ideas about how to do things better or different, 9 times out of 10 those ways can help everyone. And, and, and, and so I think it’s so important, what you’re saying is, you know, thinking of, of solving problems in different ways, doesn’t just help one, one diagnosis. And I, you know, I’m not even a big fan of diagnoses, even though I’m a psychologist, you know, it. It’s, it’s like, these are multiple strategies for different people and some work for some people, and some don’t work for some people, and you get to pick and choose what those are and what works best for you. And that makes so much more sense than any other kind of structure.
MC:
Yeah, you’re making me laugh that makes I can finish your sentence. And I wrote on Very well said, eloquent that I wanted to finish your sentence and say, that’s so much better than saying just talk bluntly to them. Right? Right. Right. I am just like, what if that’s your managerial style. I mean, that was actually on a news footage that I watched some years ago of a, of a lowly seated, Caucasian, male, autistic labeled autistic with his female supervisor above him, saying, Oh, I just talked bluntly today to him. And that’s all we need to do. Oh, my gosh, it’s such a it’s an iceberg, right? It’s, it’s an ice cube really what we’re talking about there, right there, just seeing the the surface level of the of the ice cube, and there’s so much more underneath the water in the glass.
HM:
I just think this is a lot to process. And it’s super interesting. And I think you just have it completely on the nose. And I’m like, wow, I got to think about this more.
MC:
It helps to have a visual.
HM:
I was gonna say I’m gonna have to check out your visuals. Because I’m also a very visual learner. Yeah. And because you just have, you’re just so interesting. And I think there’s just so much going on with you. Can you share with us what kind of events and projects you do you have coming up? Because there’s just so much that goes on in the very fascinating world of Marcie, both inside your brain and outside your brain?
MC:
I’m sure I could say that exactly about the both of you and we could do… We haven’t done that yet. So yeah, so I’ve been working tirelessly. And I will say tirelessly, for about 10 years when I was first diagnosed, and that was seven years after my middle son was diagnosed who’s now 22. And brief background, I faced some discrimination when I was at the university, I think I’ve shared this with you before I was going to get a master’s degree, a second master’s degree, and this one was in counseling, and I faced some discrimination and had to drop out of that program. And in fact, the Dean of the whole program, accused me of announcing to the world that my son and my brains were broken, because I was saying that I was on the spectrum. So long story short, I spent years processing that experience. So I turned that dark night of the soul that those nightmares, literal nightmares that I had afterwards, of having to leave the program based on discrimination, newly diagnosed female on the spectrum, not a lot out there about what it means to present as a non male, and be autistic. And I started blogging, and it’s hard to say without giggling, but I was going to write every day for a year and ended up writing for over three years, three blogs, and I have well over a half million words online now.
So when people say, Can you picture what a million is I kind of can now take all my blogs and multiply them by three. So all of that work and all of that processing, which is an attribute of many of us who are neuro V’s neurodivergent, led to me connecting to 1000s and 1000s of people around the world. And because of that I found community I found beautiful variations of human beings, beautiful colors, sizes, shapes, ages, socio economic, economic background, cultural backgrounds, and I realized how beautiful I was because they were all a huge, gigantic worldly near to me. And with that confidence, and with that experience, and with all that learning, fact learner is my number one strength when I do this survey of Strength Finders with all that learning, I was able to start taking that education and in that synthesis, and that knowledge and bring it back to workplace organizations and academic organizations. And I’ve been Fortunate and privileged enough to be given the position at ultra noughts Inc, which is a onshore, remote, 100%, remote, quality engineering firm, which I know Haley, you know a little bit about you, I think even spoke to our CEO. We have been able to use that knowledge to largely architect the recruitment process from the ground up, thankful for Ultranauts for giving me that opportunity and having that confidence and trust in me.
And what I found over the last almost seven years with that project, this is one project I’m doing is that what works for neurodivergent people what works for people whose brains and minds diverged from the mainstream ideal imaginary of norm works for everyone. So one of my major projects that I continue to do is to work with Ultranauts in advising the recruitment teams, and the executive teams on best practices for neuro divergence and for everyone. And it’s what we call the universal workplace. And it’s based on universal design inclusivity as Dr. Butts was mentioning, doing what’s best for one is often doing what’s best for all. So for example, we have we talked about the unspoken norms in the workplace, we actually have handbooks that talk about what an email ought to look like. We have rules for for communicating in slack. So all of these unspoken rules are brought to the light and that not only helps people who are autistic, but many people from all walks of life feel more comfortable when they know what’s expected of them, and how they can do their best. Also, we have forums, bi monthly forums where the community the team members gather and are led by a an autistic job coach, and we talk about what’s happening in the world and how to support one another.
Another project I’m working on is I’m I’m doing several keynotes. Also, I’ve co founded the diversity with dignity roundtable, which is an forum where we meet in zoom, and gather as professionals, allies and friends and supporters and talk about how we can create and honor people’s dignity in the workplace, especially those who are different, quote unquote, different. And I continue to do podcasts write for magazines. I’m consulting for the fortune 500 companies training they’re teaching, they’re guiding their eye. And of course, you know, the, the other part, the other hat, being a human being watching Netflix binges and, and hanging out with my partner and learning about birds.
HM:
Wow, that was just that was you’re really busy. And I’m excited for you with all the consulting with. speaking, I know that you’re I know that you get to see some friends of mine, which is always really exciting too.
MC:
Yes, I’ve been scheduling webinars for Ultranauts, and we just had five key thought leaders who are non males. And we had two black women, we had someone from the LGBTQIA community. And it’s all about shattering those myths and shattering those stereotypes of what it means to be on the autism spectrum or similar neurological profile. So we’ve been working on those two. And we’re also going to have a diversity with dignity global summit in 2022. That’s going to be sponsored by Ultranauts that I’m super excited about if either of you want to join the the planning team are going to start planning that actually and the upcoming months and it’ll be a virtual completely virtual event. And we’d love to have you contribute in any way.
HM:
I would love to get to be part of things with you. And I’m just really, really excited for you. Please let me know if I can help or participate. I know I’ve just been crazy busy. We’ve talked about this a couple times. But how can people learn more about you and all the stuff that you’re doing?
MC:
The easiest way to find me is on LinkedIn on my legal name profile that also has my pen name, so Marcelle Ciampi, which I’m sure will be on the website so people can read how to spell it. And Samantha Craft on LinkedIn. It’s all under one profile. That’s the easiest way and also on LinkedIn is my website name spectrum suite, suite is in an office building su it spectrum suite LLC and I keep updates there about the diversity with dignity roundtable the diversity with dignity summit. And on my LinkedIn profile, I share a lot of resources. In fact, I just shared your awesome Different Brains panel that your supporter Joseph sent me on the workplace and autistics and that was fascinating. I listened to that. So I share a lot of resources that I find related to diversity, equity inclusion, and I am no longer that community manager. I’m actually the senior manager of Diversity, Equity and Inclusion at Ultranauts and their ambassador. So I thank you so much for having me here. So I can share the news about what we’re doing at Ultranauts and also provide resources for diversity, equity and inclusion.
HM:
Thank you, again, so much, Marci, for joining us. I think that about wraps us up today. Please make sure to follow her on LinkedIn and check out all the amazing stuff that she’s doing. As for the rest of us, be sure to check out different brains.org check out their Twitter and Instagram @DiffBrains. And don’t forget to look for them on Facebook. If you’re looking for me, you can visit me at Haleymoss.com or all major social media. You can find me on Instagram, Twitter, and Facebook.
LB:
I can be found at CFIexperts.com please be sure to subscribe and rate us on iTunes and don’t hesitate to send questions to spectrumlyspeaking@gmail.com. Let’s keep the conversation going.
Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.