Community & Belonging, with Marcelle Ciampi M.Ed. | Spectrumly Speaking ep. 99
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IN THIS WEEK’S EPISODE:
(46 mins) In this episode, hosts Haley Moss and Dr. Lori Butts welcome back Marcie Ciampi, M.Ed.. As you may recall, Marcie 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. She is also a vocational coach, a peer mentor, business consultant, and community manager/lead job recruiter at Ultranauts, previously known as ULTRA Testing.
For more information about Marcie, visit: myspectrumsuite.com
For more information about Ultranauts, visit: ultranauts.co
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 attorney, author, artist, and I’m autistic. And today, I am joined here by:
DR LORI BUTTS (LB): Hello, I’m Dr. Lori Butts. I’m an attorney and a psychologist.
HM: How are you doing this week?
LB: I am doing well, how about yourself?
HM: So far so good. I’m coming up to the home stretch of being done with writing, just getting to take a little bit of a break, so I can’t complain.
LB: Nice, nice. How does it feel?
HM: Stressful and liberating, and every emotion under the sun.
LB: That’s a good description.
HM: I feel like that’s just a forever mood for me, is like I’m stressed but I’m also really happy and everything is going great. But at the same time I really just want a nap.
LB: You’re so funny!
HM: I try!
LB: Yes, this whole adult thing, it makes you want to take a nap.
HM: I know, but thankfully getting to spend time on Spectrumly with you wakes me right up and energizes me for the day.
LB: Me too.
HM: So for those of you who are listening wherever you are, we usually record in the mornings. And your girl over here is not a morning person. So I feel very energized whenever we get together and we get to talk and we get to have a wonderful guest and learn something new, so those mornings are definitely my favorite mornings, and are enough to maybe make me and morning person.
LB: Yeah, me too now. These mornings definitely energize me and inspire me every every morning, and make my whole day wonderful. So I agree.
HM: I think today is going to be no exception.
LB: I firmly agree with you.
HM: We’re having a fan favorite return and one of our favorites as well. So we are welcoming back a forever friend of the show. We’re very excited to have Ms. Marcel Ciampi. And as you may recall, Marci is the author who, you may know under her pen name Samantha Craft, and she’s the author of “Everyday Asperger’s: A Journey on the Autism Spectrum,” as well as a contributing author to the book “Spectrum Women: Walking to the Beat of Autism.” Full disclosure, “Spectrum Women” is awesome. She is also a vocational coach, a peer mentor, business consultant, and community manager / lead job recruiter at Ultranauts, which you have previously heard of S Ultra Testing. Welcome back to the show, Marci!
MARCELLE CIAMPI (MC): Thank you so much! Forever friend makes me happy! I’m gonna get out my sticker albums from Middle School and share them with you all, and just give you unicorns and frogs. And speaking of such, I just opened an Amazon package that David, my partner who is also on the spectrum, he’s a neurodivergent coach. Him and I have been creating routines around the house to make us happy during this time. And one of the things we started is a ritual of plastic animals on the center of our kitchen table. And we rearrange them into different things every morning.
HM: Okay, this is amazing and it’s the most autistic relationship I think I’ve ever heard and I love it. And I inspire to be half as cool as you two.
MC: So this morning at 6:30 am, because it’s only like 7:13am here, I’m like, “Squirrel!” I have another story about that that I’ll share later if you don’t mind.
LB: That’s so great!
HM: I always appreciate a good laugh here. And again, this show is truly no exception to how it brings me joy. And you are clearly responsible. And I guess we are starting to answer our first question, which is just how you’ve been managing through the pandemic. I mean your new routine sounds pretty great, but I just wanted to know how you’re doing.
MC: It’s funny. Primarily what pops up into my mind is I’ve come into hyperfocus as of late, especially because we’re in Olympia, the capital of the state of Washington. And so we’re right above Portland, and we’re right next to Seattle, and we are getting the wildfire smokes. So we’ve had unhealthy air for 8 days now, I haven’t been able to go outside because I have had asthma and it’s unhealthy for anybody. So it’s on top of the pandemic, and the social unrest, and I’ve been dealing with some chronic issues since I was sick for two months. I think I had COVID. So I’m dealing with one on top of the other on top of another. Like this awful pancake that I’m on the bottom of. So now when the smoke clears, I’m just going to be so happy to be able to go outside and breathe the air. And how I was just taking that for granted. Oh, I’m just stuck in the house. But once you take the fresh air away, I tell you I’ll be stuck in the house as long as I can go out and into the front yard and feed our birdies and watch them play in the bird bath. And walk through nature, because it’s been really hard, being stuck indoors. Both Dave and I feel like we are in prison. So that’s been the hardest part for me, is adjusting to all the new restrictions. And so I’ve gone into, this last week, some old patterns of hyperfocus and intensity. And I know it’s because I’m trying to rebalance and find some equilibrium and bring some order back to my life. But it’s difficult because I want to take a break and kind of get outside my brain if you know what I mean.
HM: Yep!
MC: And do other things. Like relax! And sleep! But it’s been very difficult. I think once the blue sky starts to show again, I’ll be feeling a lot better. How about you all? How are you all fairing?
HM: I think it’s kind of in that same hyper-focus, but also that “lose motivation four times and being home for six months.” So for me, getting out of the house is a rarity and I really look forward to it. And at the same time, just itching to have a little bit of normalcy and go back to my before times routines. And I also find that especially with living at home, as well that sometimes I regress in certain areas. And I sometimes feel like an overgrown teenager. But for the most part, all hanging in there, nothing too major. Just making sure everyone is staying safe.
MC: I think a lot of us are regressing, whatever age, no matter who were living with. A lot of trauma. I’ve read articles, and i’m sure Lori could speak about it too, how it’s re-triggering a lot of our past experiences with anxiety and depression and mood conditions. And having us revisit it maybe when we don’t have the supports or the energy around us to revisit it. So it’s been difficult for many.
HM: Definitely.
LB: Yeah, the American Psychological Association put out a release early on. It said that the next pandemic is going to be a mental health crisis pandemic, that the incidence of depression and anxiety is just shooting through the roof. And so it something that everybody needs to be paying attention to, everybody needs to figure out new strategies and skills on how to manage, like you said, your old techniques of going outside and taking a walk and getting some fresh air. That may not be available to you right now. And so it’s to manage those emotional states, and it’s really important to thank goodness for the internet. It’s got its bad and good sides, but at least that’s one way that people can be connected and have resources and look up meditations on YouTube, and video conference with people, and feel connected in those types of things.
MC: Exactly. And one of my past coping mechanisms is every once in a while, I’d meet a good girlfriend down at a cafe. My girlfriends, I love them, they let me just ramble on for hours. And the way that I process, it’s better than therapy for me sometimes. And I really miss that. Another part of it is when other people are stressed and feeling burdened, like almost everyone on the planet right now, especially in the US, we want to reach out, but our energy levels are already so low. And so I don’t want to reach out to some of my friends that I normally reach out to because they’re already stressed. They’re already maybe homeschooling, trying to figure out how they’re going to work from home maybe, you know haven’t seen their parents five-six months, what have you. And so it’s difficult to know where to turn and how to create the support mechanisms.
LB: Right, right.
HM: Well you can always talk to me.
LB: Yeah, me too.
HM: I mean I can’t meet up with you at a coffee shop because I’m in Florida, but I do want to be your friend and you can always say hey to me, and you know I got you.
MC:When we first got on this morning, I just couldn’t wait to tell you everything and I feel that way. We have a connection, and I really appreciate that, and appreciate you so much for having me here this morning. Interestingly enough, I had posted, I thought about how I need to connect more, I need to reach more online venues. I work from home as a remote worker so I’m so used to being online all day. Sometimes I don’t want to do that but I realized I need to reach out in different ways. And so I was going to do a Facebook Live, and then I made the mistake of watching the Social Dilemma, and all the algorithms autistic style, I went on Facebook–I’m not going to be on, never anymore–
HM: And then 5 minutes later…
MC: Play the next day episode!
HM: Big same!
LB: I think we can do a whole Spectrumly Speaking episode about the Social Dilemma. That was really powerful.
MC: Oh, you did, I didn’t even know that!
LB: No, we should!
HM: I think we should.
MC: Oh, i would love to do that!
HM: You should do one of those guesless onces where Marci gets to host for me, and then you can get a really cool therapy session talking about the Social Dilemma, and I’ll just listen.
MC: You mean i host but talk the whole time?
HM: Yes, exactly! We would go guestless. Like I talk a lot and I feel like I got a therapy session.
MC: So what I was thinking about is making a blog post about it. I already put a little bit of things about what I’m doing because my mind is so quick to–my mind’s like a list. So for this talk today, I have a list of this tree and all these different branches and all these are different directions I can go and all the sub categories of what I’m going to talk about. And with The Social Dilemma, I did the same thing. And so when i log on, I’m trying to look up something really obscure to mess up the algorithm. So there’s a condition for when you’re afraid of being tickled or something like that. When I’m just looking up random things every time I log in. And then I told everyone I’m not pressing like any more, very rare, but I’ll read everything.
HM: Oh my God. See what happened is, I got my mom’s search history now too. So the algorithm showed me all sorts of stuff. And I’m like “this isn’t me.”
LB: Interesting.
MC: Fascinating the world we’re living in right now. It’s like COVID, stay home, use social media, but don’t use social media.
HM: But also work from home. And do everything from home. I do everything from home and spend your entire life very, very online.
MC: I took a lot of notes on some of the things that, based on my personal experience, I’ve been working from home for six years for Ultranauts Inc., and I don’t know if you said in the intro, but I’ll say it again just in case. We have an autism hiring initiative. 75% of our team members are on a spectrum or a similar condition, and so I’ve been with the company for quite a while now. And we have had to adapt to that from working from home, and so it’s interesting with the articles popping up about how to manage working from home, and how to be the best remote worker. And fortunately I’ve had a lot of time to adjust, but because of my neurology I’m still adjusting, and I’m still figuring out things everyday. I’m still falling back into traps of not doing enough self-care, forgetting to take breaks, not drink enough water, working 10-20 hours a week overtime to make sure I’m not cheating the company in anyway. So there’s a lot of things for us that are on the Spectrum or similar conditions, neurodivergent, that aren’t in those articles that are serious considerations that I think we need to talk about and need to explore such as self-care and how we can have accountability for ourselves and making sure we’re not burning out and doing things that aren’t good for our bodies and our psyche.
LB: Yeah, so Marci, can you remind the audience a bit about what Ultranauts does?
MC: Sure, so we are an engineering firm and the brick-and-mortar office is in New York. And I had to fly out there in February, and that was a great experience before everything hit majorly. We hire people on the autism spectrum, and those with similar profiles, neurodivergents, across all the United States–except Hawaii right now because of time zones–and into Canada, to work-from-home in various roles. Right now we’re recruiting for software engineers who have experience with coding. A few months ago we were recruiting for a recruiter, and today we have 75% of our recruitment team is autistic. Three of us out of four, and the other recruiter is a mother to a son on the spectrum. So that’s really cool. We’re one of the few companies where we’re walking the talk. So we don’t just have autistic people in entry-level positions and we have a VP, a vice president on the Spectrum, which is awesome! We have HR on the Spectrum. And as you mentioned in my intro, I used to be the community manager, which meant I mediated and helped with advocating for the employees and setting up job accommodation forms, and what have you. Now in the next month or two, I’m moving to full Outreach, which I am really excited about because that’s my passion. I have like, 10 things coming up in the next few months because everything from the spring got pushed to the fall. And I’m sure, Haley. you’re probably experiencing some of that as well.
HM: Yep.
MC: And i’m so excited to be able to just have one focus instead of being spread in a lot of different directions. You can find out more about the company at Ultranauts, which is spelt like “astronauts,” at ultranauts.com. You can friend me on LinkedIn, connect with me on LinkedIn, and I can send you right to the site, or any information you might need.
HM: Very cool. And because of COVID , how much has ultranaut had to modify what you guys are doing, how things are getting done? I mean you mentioned that a lot of folks work from home, but how much has changed because of the pandemic?
MC: I think we’re one of the few fortunate companies, we did some major fundraising right before everything got worse. And we also are already remote, so we have the slack channel for communicating, we have the Zoom, we’re familiar with Google Meet, we’re familiar with communicating through email, through texting if it’s urgent. We have those systems in place already. We have all of our things stored online already, so the transition that way as far as from brick-and-mortar to remote has been smooth, a smooth transition. Where it’s been difficult is we had to make some changes so some of our strategies, because of clients that it might not be able to still stay with us, because of financial situations and so forth, we’ve had to change in how we’re hiring, who we’re hiring. So unfortunately we haven’t been able to hire as many people as we wanted to, and that really always touches my heart and the lead recruiter Kerry Blackmon’s heart a lot, because we pride ourselves on being a very person-centered recruitment, person-centered company, who cares about not only the employees, but the job-seekers themselves. And so that’s been hard to see that we can’t provide many opportunities. What’s also been hard is the psychological part for a lot of us, those of us that as I mentioned are in the wildfires or near the riots. I mean we’re sandwiched right between Seattle and Portland. It’s been disheartening and said of course to see people being of course mistreated, discriminated against, and then also being hurt. So that’s been difficult, and what we did at Ultranauts is we brought on my personal and professional partner David. He’s the CEO of Maraguides, David Hall. And he coaches autistic adults. And we brought him into the company as an independent contractor and he is hosting forums, weekly forums, every other week. And we get paid to attend, which I think is fantastic to talk about how we’re feeling and how the world is affecting us and how we’re coping, what are we doing to cope. And we talked about all different things from what do you feel about wearing a mask and how are you doing with job transition, or other incidences. that’s been it. But that’s been a good change, and fortunately Alternaut’s already has unique features–sound like I’m like, “Buy Altenauts.” It already has a unique feature where they provide free mental health care and free job coaching for all the employees. Through Modern Health. And we also provide job coaching by an autistic. And so people have a choice of going through Modern Health and having job coaching through a larger establishment with, more than likely, a person who’s not neurodivergent, or going directly to the autistic job coach and knowing right away that they’re going to understand your neurology and where you’re coming from, which makes a huge difference, a huge huge difference. Being able to say “this is what’s going on in my head and this is how I’m processing,” and somebody will say “Yeah, I get it I know what that’s like,” to be validated and heard and understood and seen. So those things have been very helpful.
LB: What do you think that the effects of COVID have done to the autism advocacy community?
MC: That’s a really good question. Well you know, it’s so hard to tell. I’m going to be writing a couple of keynotes and an article for a magazine in the next few days. And I decided to base it on creating safe places for inclusion. And it’s going to talk about different ways to foster inclusion and also safety at the same time. And as you both know, there’s division already in the autism community. The division between parents that aren’t autistic and the parents that are autistic, or parents that are autistic and individuals that aren’t parents that are autistic. There’s division between people who want to use a certain terminology. Like I have been outcast and discriminated against because the title of my book is Everyday Asperger’s.” And I have Asperger’s in my book because that was my journey then. And that was my journey nine years ago, that was what it was called, I can’t go back and change that. But I get discriminated against because I used that word, when everywhere else I say I’m on the spectrum, I’m autistic, to respect the majority of our culture and what they prefer.
HM: And people change, and language evolves, and that’s okay.
MC: Yeah, and so there’s a lot of infighting amongst terminology between the medical deficit model of autism and the holistic identity first model. And so to answer your question, what I’ve seen is that’s increased, that’s intensified, more people are isolating because we’re under high anxiety, we’re more isolation, we’re more stressed for whatever reasons, we have less patience, and we have less tolerance, and we have less understanding for one another. And this is the time we need to have that more than anytime. So that’s hard. It’s hard to be online sometimes, whether it’s linkedin, or facebook, or twitter. I’m not an instagram person yet. I’m kind of afraid to fall down that rabbit hole, I’m already down enough. But it’s difficult to see that we’re losing the connections that we need now more than ever. And we’re becoming so polar opposite in politics and beliefs, and what’s right. I mean the whole mask argument–I mean we’re really arguing over this? And that’s not just for the autism community of course, that’s global, that’s the US. But that’s been difficult to see. i don’t know if you’ve had similar experiences.
HM: I think it’s also just been very interesting, because of how our community reacts to current events. So I’ve been noticing a lot more discussions about autism and race, which are very needed I think, and are very important. And I just also see how a lot of folks just seem to be getting uncomfortable with that. So it’s really hard to strike the balance, at least as allies, or at least trying to be good allies and trying not to make people feel uncomfortable talking about something that needs to be talked about. And also making sure to pass the mic, because again, I’ve talked about this before. And we do talk about racism on this show. And we do talk about being autistic while black, or we talk about anything in that realm that I have had no experience with. I have no idea what it’s like to be a black autistic today. And I know that it’s really difficult for folks to realize they have to seek out these voices to continue to listen. And I think there’s definitely racism in our community and seeing that exacerbated. Especially when everyone’s home and very online at the time. It’s a journey.
MC: It’s the pendulum. Things have to get really bad before they get good. And as you said, these discussions are so necessary and so needed. They have been for many, many decades, if not centuries. They’re needed, and it hurts. Change hurts. And changing our perception, it hurts.
HM: Growth is uncomfortable. And that’s okay.
MC: It’s not like ripping off a bandaid. It’s a slow burn. And if these discussions were happening during different time, maybe they wouldn’t be making the dynamic changes they need to make right now. Maybe we’re all hurting enough and aware enough, that we’re listening more. And like you said, I could never imagine what it is like to be a person of a different color than what I am. But my mother dated an Iranian-Persian gentleman during the hostage situation. And I got to see first hand how people discriminated and our tires would get slashed. They’d called out names. And my mom’s best friends, bless her heart, she’s always been so beyond her times. Her best friend was black, and she was married to a white man. And in the 70s, that was a no-no. So I got to see the ugly side of humanity from quite a young age. And I, as an autistic person being one for justice and fairness, and equality, my 7th grade book report was on Black Like Me. Which was about a person who became black. I haven’t read it since then, I have it on my bookshelf still. And the whole book was about how I was discriminated against. So I’ve always had this huge heart for people being treated equally. And that comes out in my advocacy for autistic people. And I’m glad i found that platform, that I found. A group that I can help be voice for that I’m apart of, because it’s so essential that the voices are apart of that community. So we can share those stories, so we can share what it really means to be in the autistic culture. I hope I didn’t say anything offensive. I’m really careful when you’re talking about race today. And if i said any words or phrases–
HM: I think you did fine.. Honestly, if we did say something wrong, or we didn’t know, then hopefully one of our very kind listeners will take the time to be patient with us and call us into learn so we could o better.
MC: Yeah, I’m not implying in anyway that I know what it’s like to be a person of color but I’ve seen hints of it enough to understand how damaging and hurtful it can be to be left out. And being an autistic person and some of the experiences that most of us have had on the spectrum with discirmination. We do have an empathy that other people might not have for being isolated, and ostracized.
HM: I’ve always felt comfort as well in other marginalized communities. Even growing up like high school, the first group that actually accepted me was a lot of the students who identify as LGBTQ. Because they understood that feeling of being othered or different, even though I know that I am not LGBTQ and I know plenty of autistic people are. But there was this kind of kinship at the time of what it’s like to be different. You know what it’s like to be bullied for being different, or you know what it’s like to have that exclusion in your life. So that was the group that was by far the most accepting of me.
MC: That makes so much sense and I hadn’t even thought about that. But when I was in college, with some of my closest friends were in the same community. They were lesbian women, and I didn’t know it at the time but that’s why I was accepted unconditionally. And they treated me like an equal, where I hadn’t been experiencing that for so much of my life because I knew it was like to be othered and isolated and to be made fun of. So yeah, that’s a great point. And now with a neurodivergent movement, so many other people coming out of the closet if you will, the ADHD and dyslexia and even people with mood conditions and PTSD. I think we’re going to see a new revolution of neurodiversity. A revolution and evolution of more people saying “this is me, this is my authentic self, take it or leave it.” And hopefully that’s going to help all social justice movements. So we’re embracing and accepting differences finally. Slowly probably. But at least it’s progress. And I wish these discussions didn’t make me uncomfortable. And that’s about creating that safe place for inclusion, have mature discussions and not make assumptions that the other person is meaning to say something the wrong way or trying to insult or calling each other names. And a lot of the discussions lately are tilting more to the side of not safety. I would love to see more understanding that people only can do and communicate and come from where they come from. That’s all they can do, they’re doing their best. And as long as someone’s open-minded, and willing to listen and apologize, “I had no idea, I’m so sorry, or “thank you for sharing that with me, you opened my eyes,” then that can continue the conversation. But when we start to slam those doors on each other, no matter what minority we’re talking about, that’s when the damage starts… Boy, this conversation took a turn.
HM: I know! I was thinking, “We had a really great segment planned,” but I don’t know how to segue into it especially because we talked a little bit about our segment discussion which was going to be, or should be, working from home and maximizing the experience, but apparently, we’re talking about the sometimes very uncomfortable diversity and inclusion discussions and feeling a sense of community and belonging, which I think is far more exciting to be talking about.
MC: But working from home, that’s one of the number one things. we need to feel connected and belonging!
HM: Exactly, and I wonder how these kinds of diversity and inclusion discussions that we’re having fit into that. How do we have these discussions from home. Do we get to give people more resources, are they really awkward because people feel like they need that in person connection to bear their trauma or to share the uncomfortable things in life. I’m just very curious now because this conversation is just so energizing and exciting, than well– “oh, well, you know, to work from home–”
MC” I’m glad it’s exciting for you, my little heart’s going “I hope I didn’t offend anyone.”
HM: I learn so much from you every single time we talk. So I can’t complain.
MC: I learn a lot from you too! I joke that I’m going to start doing either a Facebook Live, we will see, or like Zoom. And I’m going to call it Ask Samantha Craft Anything. And I joke and say, “I’m curious to see what she has to say.”
HM: Maybe we can do one together and just get coffee with us, and we can just bounce off 20 questions with each other.
MC: You just announced that publicly, so you know, we’re going to have to do that. Back to the workplace, I do have some things that I wrote down, so if we want to revisit and look back, “hey isn’t that the autistic mind? isn’t that the beauty of our mind, mind we branch off and go all different directions?” Then we circle back.
LB: Yes! It is.
MC: This is an authentic conversation, this is real, this is us, this is how we communicate.
HM: Maybe it’s autism, maybe it’s ADHD, maybe it’s both. It’s as neurodivergent as neurodivergence is going to get.
MC: And that’s another thing i’ve been reading about and writing in about, is all these coexist– I’ve been creating PowerPoint presentations, how all these coexisting conditions overlap, so I’ll put a list down of all these traits what is that. “Okay, what’s that? Oh, that’s autism. Oh, no that’s gifted intellect. What’s that? Oh, nope, that’s ADHD. What’s that? Nope, that’s PTSD.” And how we’ve created all these boxes and labels, we don’t know where one begins and one ends, they’re all made up.
HM: Well i’ll take on the ADHD label, I’ll be in good company. I mean i wouldn’t be surprised if i had it at this point. The more I know, it’s like, “autism and adhd sound exactly the same.”
MC: I’m dyslexic and dyspraxic, so I’m a bundle. I’m just a bundle of neurodiversity.
HM: But you’re my favorite beautiful bundle of neurodivergent.
MC: AW! You said it in front of everybody. Just thinking back of our last conversation or two ago, when we just got totally sidetracked on what we wear to an event.
HM: I remember that, I was encouraging you to wear colors. That’s a whole nother topic, what do you wear when you’re working remotely? It’s so funny because David, he used to be teasing me when we first moved here because we’re in a very much liberal hippie town. We’re by an Evergreen State College, and when he first moved here from Austin, Texas, people would tease him. His middle child said to him, “people at school think you’re an international business person.” And so he dresses up in the really nice press shirts–I don’t even have an iron–and the really nice pants and nice shoes. And it’s so funny now to see him now that he’s all remote. So he’s top-up, the top up really nice–
HM: Business up top, party on the bottom!
MC: Yes, and that’s just so great to see that, I just love it.
HM: Can we recommend that to our neurodivergent employees who are working from home? Or as long as they’re just responsible? Like do we advise that they still get dressed up?
MC: That’s a great question. I actually have that in my notes. I find that if I spend too many days being in my pajamas, or in my sweats–like right now I’m in my pajamas and sweat shirt–that it does affect my mood. I’m going to share this–I told David there would be a point where I could share this. And if I don’t do self-care in that way, the outside self-care, remembering to shower and brush my hair–I’m so bad, I’m like Einstein. And do those things, it does start to deplete how I feel about myself. You know what I mean, I don’t have to find the perfect word.
HM: Right.
MC: The tipping point for me was last week. David’s like “are you washing under your armpits?”
HM: Forever mood.
MC: And I’m like “non I haven’t been remembering to do that.” He’s like, “You know, honey, I’m your partner and I practice good hygiene for you…” So sweet!
HM: Aww, I think you two are the cutest thing ever. I love your relationship from what I know of it.
MC: I love it too.
HM: Sorry I just had to comment.
MC: And all three of his children are on the spectrum, so he’s got all the patience in the world for me. He just came pre-ordered, I’m so blessed. And so that’s the downfall. It’s that balance that some of us on the spectrum are not good at. It’s like don’t go too far in one direction. So fortunately I’m doing that for him. A lot of times, people I know, and I don’t know if you feel this way, but in my experience with people on the spectrum, sometimes it’s easiest for us to do things for other people than ourselves.
HM: Yup!
MC: So I’m doing it for him. So if somebody can have an accountable person in their life. When I used to blog, I wrote everyday, I wrote a thousand pages over a couple years, a few years. I went into this whole stage because I have partial facial blindness, where I wanted to know what I looked like to I would take selfies for the first time, and I was like, “Oh my gosh, look at my face, look at my nose, look at my ears.” And i had to look okay when I was blogging for those first narcissistic months, because I was taking pictures of myself. So having some reason to get dressed, and to pick yourself up, whether it’s meeting online with friends or writing an article and needing to get a headshot for that article, or for your children to set a good example, or for your spouse or partner, or it’s because you’re going to take a walk, to have some reason to self-care is essential. I don’t know what your thoughts are on that, both of you.
LB: I agree, yeah. A lot of people talk about when you see men growing beards and things like that, I know they’re kind of trendy right now. But those kinds of things are linked to depression. So self-care and doing those things for yourself and taking those steps are linked to negative emotional states for sure.
MC: There’s probably some really interesting literature that you’ve read or even haven’t read yet that’s out there that might be good for some people to look at right now on that topic. Because we forget that self-care is not only about taking breaks and drinking water and remembering to eat, but it’s about self-grooming.
HM: Absolutely.
MC: And that’s hard for me, because it’s a social construct and it doesn’t really make sense and the lines get blurred about what’s enough and what’s not enough. And I’m so inquisitive. I’ll put on eye shadow and I’m like, “well I’m not going anywhere.”
HM: I need to get back into it.
MC: Yeah. “I’m not going anywhere, why did I do that?” And it doesn’t help that i’ve decided to go grey and I’ve been cutting my own hair, and have been going gray since the beginning of March. So it’s starting to look cool. And what’s great about it is my youngest son’s girlfriend came in and thinks she might be on the spectrum as well. She came in the other day, and was like “I love your hair color! Did you dye it?” Because I guess I have the really trendy gray. And I’ve never been a trendsetter. This is really cool! Like i’m in a trend for once quite by accident but a lot of people are going through it.
HM: Yeah, we’re definitely a trend setter my friend.
MC: I’m a trendsetter. So the next profile headshot will be gray, which is good because I think other picture is–
HM: So, very important question for everyone following along with our wonderfully messy, beautiful, autistic, trains of thought: how do we follow what a trend setter you are so that people can see what a trend setter you’ve been and what you’re up to with Ultranauts and you being absolutely fabulous? Because I think that everyone who listens to you should love you as much as we do. So how can we follow you and get in touch with you? And see what a trend setter you are with your hair?
MC: Well I would ask over the next few months to be really patient with me. On my website, last night at 2am–and I do need to mention this, it’s really important. I’m going to have to go off track but i’ll circle back to this thing, there’s two things I have to mention. So on my website, last night at 2am, I updated a lot of events I’m going to be at the next few months. and they’re virtual, and they’re almost all free, so I would encourage you to go to my website, which is myspectrumsuite.com. And suite, as in office building. And look under autism, and look under events, and I think there’s only 6 or 7 virtual events there. Almost all are free. So that’s a great place to learn all about what I’m doing and to see a picture of David, so you know who we’re talking about. And also, I’ve been a lot more active on LinkedIn, because I’m going more to outreach now, and building up those professional relationships. Which look more difficult out of the safety algorithm out of my safe Facebook group they’ve built for me. So you can find me there by my legal name, Marcel Ciampi. And I connect with almost anyone, unless you look like you’re a face account. Feel free to reach out there. In addition, you could find me @aspergirl twitter. You can message me at Ultranauts. I’ll be doing some upcoming webinars and articles, I’ll be sharing these online as well. So the thing I wanted to say, and maybe there’s one person out there who can benefit from this, is one of the reasons I was up at 2am working on my website last night, is I started taking melatonin to try to help with some of my sleep and anxiety. And it actually had the opposite effect. And for the last week, I have been worse than coffee. Worse than PMS. Maybe I thought it was my premenopausal hormones. I’ve been agitated, I’ve been bitey, I’ve been saying things that I don’t say, and jittery and insomnia. And it turns out I had been taking 10-30 times the recommended dose. And if you research online, there’s an MIT study, there’s other people that have come out and said all you need is .3 of a milligram. And a lot of these bottles have 5-10 milligrams in them.
LB: Oh, wow.
MC: And so I’m really glad I discovered it, it was an epiphany last night at about 8:00 at night. And poor Dave is trying to watch his show, and I’m like “read this research study! Read this, this is what’s happening!” And it turns out that he has also been taking it for over a week, and he’s been agitated and bitey. So I just wanted to put that out there. And the other thing, to end on a very high note, and you’ll have to share this with Hackie, the CEO or Different Brains, the Founder, is David and I also collect stuffed animals on our bed and we also put them in certain positions. So we have a unicorn, and a bear, and a sloth. And we decided what animal we wanted to bring into the community, and we got a hedgehog. And guess what we named him.
HM: Sonic?
MC: Hackie! After Hackie on Different Brains! He’s so cute, I took a picture on my phone. And I will send it to you if you want to put it along with htis podcast.
LB: That’s so great! Did you send it to Hackie?
MC: I kind of wanted it to be a surprise.
HM: Okay.
LB: That’s so great!
MC: This conversation was all over the place.
HM: I love it.
MC: I’m glad that you accept my brain as is, and–
HM: We love you! And We’re very excited to see the “Baby Hackie.”
LB: Yes, Hackie the Hedgehog.
HM: So if you’re looking for Hackie the Hedgehog, our friend Marci Ciampi, Samantha Craft, whatever of the many names, you know where to definitely find her on social media at MySpectrumSuite. She is so fabulous. And for the rest of us, be sure to check out differentbrains.org, and check out their twitter and instagram @diffbrains, and don’t forget to look for them on Facebook. If you’re looking for yours truly, you can find me at Haleymoss.net, or on Facebook, twitter, and Instagram, @haleymossart.
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.