Motherhood On The Autism Spectrum, with Carly Fulgham | Spectrumly Speaking ep. 107

 

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IN THIS WEEK’S EPISODE:

(AUDIO – 46 minutes) In this episode, hosts Haley Moss and Dr. Lori Butts welcome to the show Carly Fulgham. Carly is a mother, wife, and Vice President of Document Services Strategy for a major worldwide bank. She is the first autistic President of the Board of Directors of Autism Society Ventura County, VP of Autism Society of California, and is on the board of The Art of Autism. She is Chair of Autism Society of America’s Panel of Autism Spectrum Advisors, serving on the national board, and was awarded their Volunteer of the Year award in 2018 and the Bob Beggan Professional Mentorship Award in 2020. She serves on two local museum advisory councils for disability inclusion and advised the Grammy Museum on their Sensory-friendly Saturday program. She has also won Global Diversity and Inclusion and Global Volunteer awards from her employer, which are awarded to less than 0.03% of employees globally for her work both inside and outside of the bank to ensure all people on the autism spectrum can find success and joy in their lives.

For more about Carly, visit: linkedin.com/in/carlyfulgham

 

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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 spectrum Lee speaking. I’m Hayley loss, and attorney, author, artist, and advocate. I’m also autistic. And today I’m joined here by Hi, I’m Dr.

 

DR LORI BUTTS (LB):

Lori Butts. I’m a psychologist and an attorney.

 

HM:

How are you? We have made it through the very beginning of 2021.

 

LB:

Yes, we have. It’s been interesting, how are you?

 

HM:

It really has been interesting. So far, so good. So I got to start my role as an adjunct professor this this past week. So I’ve been gradually getting used to getting used to teaching and having a little bit of something new going on. So I teach on Tuesdays and Thursdays.

 

LB:

Nice.

 

HM:

And my students are mostly like future service providers. And they’re all are more doing a class on autism and understanding advocacy, and mentorship and all that good stuff. So a lot of the things that we talked about here on spectrum Lee and things that are a little bit deeper, that might be things that are I find really interesting and geeky, like a little bit of policy, a little bit of just thinking more about neurodiversity as something that might be new to them, rather than here where it’s kind of just accepted. I mean, literally, our friends here that host us are called Different Brains, which you know, is kind of neuro diversity in a nutshell. So I think our our students are kind of getting a taste of neuro diversity and understanding what that really means for the first time. And it’s really just an exciting thing to be doing.

 

LB:

Well, that’s exciting A that it’s a, it’s a offered as a class, and it’s exciting that their students interested in learning. So it’s great. That’s awesome. Thank you, I

 

HM:

think I think we have about 15 students this, this term. So, so far, so good. Their term is only about a month, month and a half. So that’s how I do classes there. So their terms are a lot quicker, okay. And it’ll probably be offered at another term during what I guess would normally be the semester. So it’s the only class that they’re currently enrolled in right now. So they get along with the practicum. So they kind of get to focus on what we’re learning, which is really just cool.

 

LB:

That’s great. Wow, that’s exciting.

 

HM:

How are you doing?

 

LB:

Good, thanks. Good. Same old, same old, kind of like Groundhog Day.

 

HM:

I know. It’s just another day and these times.

 

LB:

Exactly. I’m very excited for our guest though.

 

HM:

Me too. So today, our guest is Carly Fulgham. Carly is a mother wife and she’s vice president of document services strategy for a major worldwide bank. She is the first autistic president of the board of directors of Austin Society of Ventura County, the VP of the Austin Society of California, and she’s also on the board of art of autism. She is chair of the Autism Society of America, his panel of autism spectrum advisors, serving on the national board and was awarded their Volunteer of the Year award in 2018. In the bob bag and professional mentorship award in 2020. She serves on two local museum advisory councils for disability inclusion, and advise the Grammy Museum on their sensory friendly Saturday program. She has also won Global Diversity and Inclusion and global volunteer awards from her employer, which are awarded to less than 0.03 of employees globally, for her work both inside and outside of the bank to ensure that all people on the autism spectrum can find success and joy in their lives. You are awesome, and welcome to the show.

 

CARLY FULGHAM (CF):

Well, thank you, Haley. It’s really great to be here and to meet and to spend time talking with you and with Dr. Butts. Thank you.

 

HM:

Thank you for joining us. And just to get everybody up to speed because we like to ask this of all of our guests. Can you tell us a little bit about how you became involved in the autism community?

 

CF:

Sure, yeah, I actually would, through the first 20 years of my life in complete utter ignorance of the fact that I was autistic. I had created so many different workarounds in my life, I was able to muddle through things and, and have some successes and some drawbacks and some challenges in my mid 20s. I ended up having a major burnout and I went on social security disability. And then I randomly came across a Time magazine article about a little boy with autism and a light bulb went off. And I was able to get my diagnosis from UCLA when I was 28 years old, and I’ve always been a person who’s wanted to help people and give back so you know, as soon as I discovered As soon as I was functioning enough, and I came across the Autism Society, I started volunteering. And next thing I know, I know, my local affiliate may be president and the rest is history.

 

LB:

Can you can you tell us a bit about how you fared through this pandemic so far?

 

CF:

Yeah. It’s actually been a bit opposite for me than most people in that I have always had a work from home accommodation for the last decade. And so, I was accustomed to being at home, but being by myself in solitude, and peace and quiet. And so now suddenly, I, my husband and my toddler are here all day, every day as well. And so it’s been quite interesting to have to, to adjust to that. I mean, everybody else is like, Oh, my gosh, I miss being around people all the time. But I’m like, I miss my solitude.

 

HM:

I’m the same. I’m the same way though. I really do. But I was working from home a little bit before as well. I’m like, I miss my solitude, too. So I’m with you on that?

 

CF:

Yeah, definitely. So it’s, it’s been quite amazing, though, to be able to watch my son so closely, as opposed to him being in daycare all day, every day. And really watch him turn into a little person. He just had his third birthday on Monday.

 

HM:

Happy birthday to him.

 

CF:

Yeah. So it’s been in my I think my favorite things are just little things like I set up a little art table right next to my desk. And so, you know, he’ll be like, Mommy, I want to paint. And so we’ll get out the paints and he’ll he’ll paint his little table right next to me while I’m working at my little table. So, but yeah, his and his, he actually did have some developmental delays. And so he prior to everything, he was in a bunch of different therapies and whatnot. And so switching those two virtual were, was quite a transition. But you know, he’s gotten to the point now, where he’s, he’s will ask either one of the therapists or one of those family members. He’s like, I want to talk to people. And that means he wants to get out the iPad and call somebody. He’s a social butterfly.

And it’s funny because he actually did become a little bit of a rough close the first few months. And we were starting to get worried about a socialization. So in July, and plus the, you know, my husband and I our sanity as well. So in July, we decided to have him start going back to daycare two days a week, because his his daycares been open this whole time, mostly, the kids have, you know, attorneys, first responders, folks from the local military base people that still have to work. And so they’ve done a really stand up job of making sure that everything is, is safe. And so we, we did, like, what my husband and I are both high risk, so we were hesitant to have him go back full time. And so the two days a week has been a really good compromise. And, and he loves it. So he like he loves being around everybody, too. So

 

HM:

That’s wonderful. So we want to talk today a little bit about parenting on the spectrum. And I’m wondering what are some of the challenges that you’ve had as a parent, especially during pandemic times? And I think you highlighted a little bit of that with compromise. But and you’ve also talked a lot about the joy, but I’m really wondering what some of the challenges are.

 

CF:

The challenge — biggest challenges are actually not what you might think for me, I think that my biggest challenge is getting my husband to understand how to raise a kid. Because I honestly think my autism and my awareness have developed the developmental stages that I’ve gained through my nonprofit work has helped me to be a better mother. And so I, you know, like I I still remember back before he could even talk there was one morning when he was he and I were sitting at the breakfast table. And he just started screaming in the middle of breakfast, like at the top of his lungs, wailing, crying and my husband’s like, freaking out, he leaves the room because he can’t handle it. And I took a moment and I said, Okay, there’s something that’s upsetting him, what is upsetting him, nothing was different about breakfast was the same thing he always ate. So I followed his eyeline. And he was staring outside in the backyard at a blue ball that was sitting on the grass. And we’re always careful to put away his toys in the backyard. So I said, Do you want me to put the blue ball away, and he nodded his head in the middle of his wailing. And so I put on my flip flops with no backyard, put the ball in the box that we normally keep it in, and he instantaneously stopped screaming.

And so, you know, for me, it’s really about just taking a moment to figure out what is he trying to communicate, even if he’s not using words. And I, you know, I credit, you know, all the amazing, you know, conversations I’ve had with my non speaking friends, and they’re telling me about their experiences, with, you know, being able to, to be present for that. So, that’s, that’s one example. But it does get hard because sometimes my sensory issues do conflict with whatever he’s doing. And, and so that can be a challenge, because I do have a whole mess of them. I didn’t even know they existed before my diagnosis, I thought everybody experienced the world that way. I really think that one of the other challenges is just making sure that he isn’t scared at this time. You know, he’s, he’s aware of what germs are. He, you know, he, where he’s, you know, just like I say, just just turned three, but he will, he’s gotten to the point where he’s really good at wearing a mask if we do have to go out. And so it’s really, yeah, I mean, I hope that answers your question.

 

HM:

I think i think i think it definitely does. I mean, I don’t really know that much about being a parent, I’m, I’m not one. So I really appreciate it.

 

LB:

Switching gears a little bit — a lot. Kind of back to the pandemic, how do you think advocacy for in the autism community has shifted or changed because of the pandemic?

 

CF:

I think that, you know, it’s really been wonderful to see how our community has coalesced around each other to give each other support in this time, you know, we’ve had so many different Facebook groups and, and other, you know, online areas that, that we’re able to connect with each other. And I love that. You know, for the most part, everybody’s really supportive of each other’s going through, you know, in particular, the community of autistic women. I mean, I, I’m always amazed at how every week, there is a new post of like somebody saying, Hi, I’m new to the group, my kids got diagnosed, and I realized I want to stick to, and so I love that we’re finding each other, and we’re able to support each other. And, you know, even just advice on how to deal with situations that do come up, you know, being able to be connected to that global community. Like I honestly, love that 99% of people I know, don’t live anywhere remotely near me.

 

HM:

I feel that in my soul.

 

CF:

Yeah, totally.

 

HM:

Even like, even you and I.

 

CF:

Yeah, exactly. We’ve gotten to know each other over the last couple years. But even more so since the pandemic started. Because when I’m, when I’m doing my work and college accommodations workshop, but the last two times it was virtual for the first time, so But yeah, Haley, it’s been great being able to have you join us across the coast and share your wisdom and knowledge. And so it’s, you know, especially on the parenting forums, there’s a couple of really great groups for moms on the spectrum, you know, women who are just trying to muddle through this whole world of it. And I think one of the biggest concerns for, you know, all parents is that we, you know, those of us with autism, we worry that doesn’t matter how good or bad of a parent we are, we’re gonna have somebody who’s just gonna walk up to us and because we have autism, thinks that we’re not competent. And so that’s actually a fear that I hear echoed a lot online. And I myself have it too.

You know, I remember when we first had our son, I, when we were having therapists, or when he first got into early intervention and OT and, and whatnot. When we first started having people come over, I was really anal about making sure that everything looked clean in the house. Because while these are people that are accustomed to the world of autism, you know, I still worried because they’re mandatory reporters, by law, they’re required to report if they think a child is in danger. And so, you know, daycare, I’m really adamant my husband’s in charge of Bath time, I’m like, you have to give him a bath. Because because there’s a little bit of grease in his hair, and I don’t want anybody at daycare to report that he’s being neglected, you know, even though he’s not he’s perfectly happy, perfectly healthy, you know, we were in for our, our well visit for his three year old checkup on Tuesday, and, you know, clean, perfectly happy, healthy boy.

And it’s funny too, because one of the best things I think about the pandemic is having him be around us talking. Not just to him and to each other. But all I think, honestly, all of our business meetings and having, he’s got we got him an iPad that he uses, and that he can do his love to use in the afternoons. And I’m really restrictive about what he gets to do on it. And so it’s mostly things like Sesame Street, PBS Kids, but having that exposure to us talking to grown ups in business meetings, us talking to each other as talking to him. You know, those those really educational children’s programming. He went from in like January, February, only being able to say, one or two words, with a vocabulary gave me less than 100 words, to buy his by last summer, when he had his two and a half checkup, being at almost a four year old level of speech. And now he’s at a four to four and a half level, according to the doctor. So he’s, he’s turned into this little person overnight. And it’s really been wonderful to watch. And he says the darndest things. I know there’s like a show about that. But like he, like one point this fall, he said, Mom, you’re impossible. And I’m like, You’re not supposed to say that to your teenager.

 

HM:

It sounds like is this right? You might actually have a teenager, by the spring…

 

CF:

I know but but it is odd to to see how play has evolved in the pandemic, because like, he knows what germs are, I mean, how many three year olds before this year knew what a germ was, right? And so like, we got, I got him. Fisher Price did like a limited edition set last year. And so I got him this community heroes set of little people, and you know, the little figurines that kids play with. And so there’s a an EMT, a doctor, a nurse, a grocery store, worker, and food, like a delivery driver. And it’s got a little like straw shopping cart on his hat. And so it’s like, weird is like yesterday, he was playing with them. And he’s like, one of them’s like, you know, the grocery store guys, like, I don’t have any, any bread, but I have eggs. And then the delivery guy guy was like, I’ve left your groceries on your front porch. A year ago, if you would have said that a three year old would be using that kind of dialogue and play. Like, everybody would have thought you were crazy.

 

HM:

I definitely feel that. I would have, I would have probably thought you were crazy, too.

 

CF:

No kidding. It’s just really, you know, I like to take a step back sometimes and just observe things like that, and just really reflect on them. Because that’s what I that’s the little things in life is what I think is most important to focus on. Yeah, you’ve got the big things, you’ve got the big milestones, they have to meet for their age groups. But being able to take a step back and just watch him play or to participate in play with them and, and see the interesting things he comes up with, like, the other day, he was playing with his dad and they decided that they were gonna have a dinosaur takeover and the way to like, protect the people from the dinosaurs was something like they had to fart or something. That’s like… like, just knowing that I’m able to just, you know, being able to observe that play and be able to, you know, be aware of it.

It just it’s like, yeah, things get tough things get hard. But there’s so much little snippets little vignettes of joy in there. And being able to focus on that helps me through the difficult times the hard times. And like I said before, what I know about communication through my work with autism has really helped with the getting upset in our house. And, you know, he’ll get upset and he’ll start to cry and he’ll be upset. But we have taught him the language of emotion. We’ve taught him disappointed, sad, mad, you know, happy glad we’ve we’ve taught him those words, and he understands those words. And he can use those words. And, you know, if we ask him what what, you know, what are you scared of something what’s scary, you know, he, he may take a moment, but he’s able to then articulate, and then we just get creative.

Like, he was afraid of the word ghosts in his room the other day. And so I said, Okay, I’ve got something that can take care of that. So I went to my room found my old I watch box, which is, if you’ve, I don’t know how many people have I watched, but it’s like a long, skinny white box. Ah, and I told my son that that was a ghost vacuum. And so I just pointed the box all the corners of his room and made silly sound effects and sucked up all the ghosts in his room, and then put the box under his bed and say, now that it’s under your bed, it’ll just automatically pick up all the ghosts in your room, and you’ll never have another ghost in your room. And a month later, that box is still under his bed. And you know, so I don’t have to have something fancy, I can just use random things around the house at his age. And, and, and I did I it’s not that I’m, I’m not gonna, if I tell him, there are no ghosts, he’s not going to believe me, because he would. And so I just, you know, find a way to work with him to so that he can be comfortable with whatever it is he’s feeling.

 

HM:

I think that’s really, really smart. And I really like that. And all of this talk is making me want to go straight to our segment. So we’re talking about we were talking about parenting and stuff. And I’m like, I really want to get to our assignment, because it’s just so exciting. And I think it’s such a great natural flow. So, I have mentioned that I do not have kids. I’m not at that phase of my life at this current point. But the more that you talk about your son, and how he’s like a little person and getting creative with like the ghost vacuum and all stuff, I’m like, Oh, my God, you’re making me think about that having kids might be something that one is in my future someday, or into something I might actually want, because it’s something I’ve always kind of been on the fence about. So I kind of think for our segment, we wanted to talk about women on the spectrum that are thinking about becoming parents someday. So Yours truly, and we’re also thinking about new parents, so like, what suggestions you might have and what you might like, what your journey might have been like, and things like that, because I feel like I am not the person to comment on this as someone who since their early 20s has always been saying, Yeah, I’m never gonna have kids. And then the older I get, I think, well, maybe one day with the right person, this would be really cool. And maybe it would be cool to have a kid and you also address a lot of my fears as well. So I’m really interested to if you have the time, of course to talk to us about this.

 

CF:

Yeah, sure. So I always wanted kids since I was little. But in my 20s, when I started having significant problems, I kind of gave up on the idea that it was never going to happen for me. And then I eventually, you know, got my diagnosis, got back on my feet, gradually worked my way into the world of work, and met my husband on eHarmony. And after we were married for a few years, I just really wanted kids, all of his friends had kids. And you know, the most of my co workers had kids. And it just, it was something that was really something I wanted. And so we agreed to start trying after a couple of years, it wasn’t working. So we went to a fertility specialist. And we were able to figure out what was going on.

We determined that we needed to do IVF. And so I actually in my 40s, you know, because I had that huge delay, like completely missing out on my 20s and early 30s. You know, getting my life back in order. I was a lot older. And so we ended up actually having to do four rounds of IVF. And each time I only had one egg, make it to the point where you would freeze it to do the genetic testing to make sure it was healthy. And the first one didn’t make it through the PSA, which is like a one and a million thing that never happens to anybody. And then that was really hard because I was there at the office ready to do the implant. And they had to tell me that they were sorry. And then the second and the third one had a try. So me that just wasn’t compatible with life. It would have, you know, died before the end of my first trimester. So we couldn’t implant those and then the fourth one worked out. So what a journey? Yeah. So yeah. So and and there’s, there’s, there’s actually some really great online support groups for people going through fertility issues, whether you’re doing IVF for or just, you know, the natural way. You know, there’s really some great, great groups out there. And then once we got pregnant, I was high risk and like a million different factors. And so I was very closely monitored, which actually was very good, gave me a great sense of relief, because I was able to, to get a lot more ultrasounds than people normally do. And it was actually at one of the, one of the last ultrasounds, they were monitoring because they thought his, his head circumference was going to be too big to do a natural birth. And they were probably going to do a plan cesarian just because he just wouldn’t have fit. So and so it was at my last, my last planned ultrasound when the neonatologist said let me call your doctor and I’m like, oh, and he comes back and he’s like, okay, so you’re all out of amniotic fluid. It’s apparently been leaking. I’m like, I had no idea I did not notice. And so you need to go to the hospital now and have a cesarian, I was like, 36, just just about 37 weeks. So it wasn’t it wasn’t super early. It was like, Yeah, like his, his due date was January 23. And this was January 4.

Yeah. So it was it wasn’t that it was like two days later than if he would have been considered a preemie. So he was he was early, but not a premium. Thank goodness. But, but I had had some during during monitoring session in November, I had had some contractions that I couldn’t even feel but they were, but they basically gave him the shot to like advance his lungs, the steroid shots. Oh, great. So I already had that like a month earlier. Nice. Good. And so it was like everything fell into place. And so I, I kind of did break the rules a little bit. And I went back home and grabbed my bag and like, emailed my boss, and said “so I’m not coming back to work today after all. Here’s all my stuff, the next three weeks”, and I get the call from the hospital, like you’re not here yet. And I’m like, “Oh, I’m on my way.” And, and so then we we got to the hospital, and they gave me the epidural for the surgery. And I gave them a copy of my really, really, really long birth plan. Like everything I wanted to have happen at the hospital. And, and, and there was a huge section about all my sensory issues.

I also had something I had put in there about pain, like how I might, how I might respond to pain. And, you know, one of my sensory issues is I’m very, very sensitive to certain types of touch. Like I can, like, I noticed the second a stray hair falls out of my head and lands on my arm, like, like, oh, there’s like to get rid of it. Or like, if you touch me with your fingertips, it feels like you’re, you’re poking me with pins and needles, but like, if you rub your hand on my arm, that’s I’m fine with that. So I kind of explained that because if they tap me on the arm or the shoulder, I’m going to freak out. And you know, and I didn’t, I wanted them to be aware of that and because the nurses are gonna have to touch you that type of a thing. And so they were actually very accommodating. There was one nurse during my stay there that I didn’t I had trouble with communication like she she her method of communication was difficult for me to understand like she was very joking and sarcastic and stuff like that and I have a really hard time with sarcasm. And so I did you know I said I’m sure she’s a perfectly competent nurse I’m just having trouble with communication can I get a different one and so then she was they were great and never put her on my shift again. But this is area itself like I had my noise canceling had Hold on. Like, I’m like, they’re gonna be talking and there’s gonna be chaos going on in the operating room and I just I need a little bit more calm than that. So. So it’s great, because like the very first picture of me holding my son, I’m wearing my noise cancelling headphones. That’s awesome, though,

 

HM:

I will always appreciate a good pair of noise cancelling headphones, and anyone who thinks otherwise is severely mistaken.

 

CF:

Exactly. So I just, you know, to me, that’s the epitome of like, the photo of the autistic mother. You know, that’s, that’s, that’s, and you know, so that was really great having that wonderful experience at the hospital. But, you know, I’m probably like one of the few, if any mothers out there that can say I actually experienced zero pain during childbirth. Like, there’s plenty of pain afterwards, after the surgery, but no, no pain during childbirth. So that was that was a blessing, because that says a lot of the A lot of women on the spectrum have a lot of concerns about that. But there are some that, you know, pain management, during birth is something that’s, that’s, you know, tried and true. And, and the doctors are really good at it out there. And, and, and the other thing that I think is interesting that a lot of autistic women are worried about is just that entire hospital experience. And what I tell them is, you know, look, there are so many of us that are undiagnosed, that every single maternity nurse on the entire planet has had plenty of autistic patients. Right? Right. There’s no way they haven’t, because, you know, we’re not finding out what we have autism tell our kids are diagnosed, that means that we had them when we had it, when we were in the hospital giving birth. They’re used to all kinds of weird sensory things like, Oh, I have to have low music playing, or I have to have heavy metal music playing or I have to have, you know, this lavender scent being pumped in the room, or I have to have it set free. You know, like they’re used to all of that, like even typical moms asked for stuff like that. Right? So, yeah,

 

HM:

I think my question with that is, I know that there is a lot I know, this is probably a question that we probably don’t have an answer to. But I do know, for women, there’s a lot there’s already bias with medicine. So our pain isn’t taken seriously, or that someone doesn’t believe us. And I think for autistic people in particular, there is extra bias in the medical system. And I’m wondering how that kind of goes into having kids or like, an earlier in the segment, not the segment. But I think the interview was, while you mentioned, like, different concerns that autistic moms have when it comes to doctors and when it comes to reporting and all that stuff. So I kind of wonder how all that bias almost plays into being an autistic parent. Like, I think that’s something that I’m kind of nervous about in the future is I think, Oh my god, that what if I’m in pain and someone doesn’t believe me, because they think autism impairs my sense of judgment, or they think something else?

 

CF:

Well, I think in the regular non maternity ward hospital environment, that is that is true. And we also just in general have trouble with paid scales, like they have that stupid diagram of the facial expressions with numbers. So I have no idea what any of that means. I had like a really serious condition A decade ago with my, with my pancreas and, and a gall stones and whatnot. And, and they asked me, you know, on a scale of one to 10, what is your pains? Like?

 

HM:

You have to say what they want you to set, you almost have to say it’s like an eight or nine and I think below and probably like your eight is might be someone else’s like four or you might be someone else’s eights.

 

CF:

Exactly. So this is what I said: Well, I’ve heard that giving birth is the most painful thing you can experience. So if that’s a 10th, this is a nine. And then they’re like, oh, okay, you’re in a lot of pain. And so I know that there’s some people that are out there working on new pain skills for people with autism and and so I’m hoping that those turned out to to work really well. But I think in general, you just have to be be descriptive. Like it feels like someone’s stabbing me with a knife. It feels like ants are crawling on me like, like, using descriptions like that can help augment, you know, because that, for me, I can’t quantify even in normal life, like I’m sitting here at my desk looking out the window at my son’s sandbox. I couldn’t tell you how far away it is from my chair. I have absolutely no idea. I can’t tell you how much someone weighs how long it takes to do something. So trying to quantify pain is just completely, you know, outside of the paradigm of things I’m good at I’m really good at that strategy, and I can, you know, that’s what I get paid for my day job. But you know, I’m a good thing. thinker, I just can’t tell you how long it takes to do something without doing a time study.

So, you know, I think with respect to the medical profession, you just have to really think in terms of what did what do they need to know, they need to know that I’m a direct communicator, they need to know. And so they, if they, if they want to tell me something, they need to just come out and tell it Don’t beat around the bush don’t talk around in circles, I, I won’t catch up on subtle hints. They need to know that I have to have all instructions in writing, because while I may understand everything, they’re saying, while they’re saying it, I will not remember it, I have to have every single step detailed and writing and I like I prefer to read the the written instructions before I leave, in case they’ve inadvertently skipped a step that they thought was obvious. I do that even with my all my regular doctors, not even just with respect to the birth experience. And so, you know, I think one of the things that was really pointed as because I was I’m probably one of the few that’s out out about having autism, because there is that that fear of the medical community and and so when I was at the hospital after I gave birth, you know, my, my husband said the nurses at one point, said, you know, and we’re talking in the hallway, I didn’t know about it, they they said, Oh, she’s so normal, I didn’t expect her to to be so normal. Because I come out as autistic…

 

HM:

“You don’t look autistic” (Laughs).

 

CF:

Exactly. So I think retrospectively, I would point out to them that they probably had other autistic moms, like I mentioned before, because I didn’t have that in my birth plan disclaimer stuff. So I think I probably would point that out to them that most women are undiagnosed, and so they probably had autistic patients before. And but then the really, the fear comes to our you know, like I said before, somebody’s going to make that presumption that I’m incompetent.

 

LB:

Yeah, that’s it that’s really sticking with me. That’s a very, um, unnerving. And something that makes me sad.

 

CF:

And it doesn’t just happen with people with autism. Dr. butts, it’s happening with all disabilities. Right?

 

LB:

Right. And it’s just horrifying. It makes me, it makes me sick. I’m so sorry for that. And I don’t know how to wrap my head around that and help and change that. Regards. That’s awful.

 

CF:

Well, podcasts like this, hopefully, doctors and nurses will and you know, other people that are mandatory reporters, will, you know, hear things like this. And, you know, really step back and think about it, you know, just because somebody thinks differently doesn’t mean that they’re incompetent. Just because they don’t show an expression on their face that you’re expecting to see doesn’t mean that they don’t care. You know, when I’m real, that was one of the things I had in there is like when I’m really stressed out, I may not act or respond the way that you’re expecting. Because I have to think about putting on facial expressions and using tones of voices. And when I’m stressed out, I’m going to forget to do that. Right. Mm hmm. And so I’ve tried to be as as candid about things like that as possible, just because I didn’t want somebody to say, Oh, she’s not smiling. She doesn’t care about her baby, we’re going to call CPS.

 

LB:

Right. Right. The other thing I’m learning from this is that I think all of the steps and everything you are you do for yourself would help the medical community across the board. I mean, you know, everything you’re saying about, you know, lengthy, you know, we have to take these mandatory courses and medical errors, right. And so what you’re saying about doing these step by steps and giving them written, giving a patient written instructions on would help everybody that kind of system would help all patients and, you know, with, you know, my parents, I’m, they’re not, they’re not elderly, but they’re older, and I’m always, you know, mindful that somebody needs to go with anybody to the doctor and hear what the doctors saying. But if everything was written out the way that you’re doing it, you’d have much less medical errors just across the board for all cash.

 

CF:

Absolutely. Definitely. Yeah. Cuz then it’s just little things like you go to a dermatologist and you get prescribed something and you’re supposed to like wait six hours after you apply the cream before you go out in the sun or whatever.

 

LB:

Right, exactly.

 

CF:

You know, like just having that written down. You can stick it on a post it on your door and remember, oh, wait, I gotta wait five more minutes to go outside. Little things.

 

LB:

And I find we’re doing this this podcast that, that those of you with autism really, you know, cuz all of the ideas that come out here, and there’s at least several of them of each one that we do, and help all people and can help the whole community and, you know, you all are, are in a position where, you know, you’re advocates and you’re, you know, figuring out how to make life better for yourselves, but but in doing so can make life better not only for the autism community, but for the community at large. That’s amazing. That’s very insightful and very thoughtful.

 

CF:

Yeah, definitely. And, and I really have taken it to step load, you know, with my son as well, like, I, he’s got some gi issues, so there’s certain foods you can and can’t eat. So I periodically send a reminder to his daycare, this is the stuff that he can’t have. And so, we, but I also Garner, you know, get feedback from them. I’m like, Do you notice this he mostly sit in the corner by himself? Or does he engage in play with other kids? You know, does he do this? Or does he do that thing? Like, I I’m actually actively asking them the questions rather than just shooting them off. And, and assuming he’s doing fine. You know, and that, you know, that’s one of those things where I wish that one of the things that comes out of the pandemic is just a greater understanding of differences. And, you know, the whole thing with that everybody’s talking about, about how work from home is actually doable right now, not everybody’s working from home. But also on another scale, just, you know, it’s a, it’s the beginning, it’s the continuation of the dialogue of different is okay. And it’s the continuation of the dialogue of, you know, being inclusive of all because, like, it breaks my heart, there’s another kid at his daycare a year ago that, you know, the parents were just completely refusing to acknowledge the fact that her daughter, their daughter had significant delays. And they, you know, they, they were given my card as somebody, they could reach out to talk about it. They were given, you know, the information to go to get an evaluation from our local agencies, and they just were refusing to do anything. And the longer you wait with the little kids a lot longer it takes to get them caught up. And it’s that stigma, it’s that fear. And I think that, you know, a second I noticed that he was behind like, one of the things that I did when I first heard his very first pediatrician visit, when he was first born, as I said, I noticed they had this paper that they were checking, asking me questions like, does he do this? Does he do that where they were doing the developmental evaluation and and I, and I turned out, I was the only parent they’d ever had, in their decades of practice, whoever asked for a copy of it to take home, so that I could monitor it a home.

 

LB:

Oh, wow. Yeah.

 

CF:

I mean, the CDC has a really great app for monitoring development. But I’ve got, I still have that yellow piece of paper on my refrigerator. And now I’m tracking what’s supposed to be doing it the three and four year old level to make sure that he knows how to do it. Because if, if he’s supposed to be able to draw a line, and I don’t know, he’s supposed to be able to draw a line, how am I gonna practice with him? Make sure he knows how to draw a line?

 

LB:

Exactly.

 

CF:

I don’t know. Maybe they’re supposed to know how to do that at age five. Maybe at age two. I don’t know.

 

LB:

And I would, I would suspect that 99% of all parents don’t know that either.

 

CF:

Yeah, so why don’t all pediatricians office automatically give parents a copy of that at the right. You know, why can’t that be a thing?

 

HM:

Good question.

 

LB:

It’s so obvious. And it makes so much sense. You’re so right.

 

CF:

So I encourage anyone listening to this, if you have a kid, no matter how old they are, ask your doctor for a copy of that form that they’re checking boxes offer highlighting things on every time you go in. And because it’s never too late to make sure that they’re where they’re supposed to be.

 

LB:

Right. And it’s not a secret.

 

CF:

I mean, this score is so ancient, typed up on a typewriter.

 

LB:

I’m sure it was

 

HM:

I’ve only just been quiet because I’m just learning so much. This is so not the world that I know kids and pediatricians and things. But I learned so much today. I just wanted to throw that out there.

 

CF:

Oh good. Yeah, I

 

HM:

learned a lot. And I think that everyone who’s listening to us is going to learn a lot from you, too. So I know this is kind of a random question, but how can we keep in touch with you and get all all the scoop? So how can we find out more especially from you and that our listeners can keep learning from you too?

 

CF:

Yeah, sure. Well, I’m very active in the autistic women, Facebook and moms on the spectrum. And so you can always find me there. But then also you can anyone’s Welcome to connect with me on on LinkedIn that’s more towards professionalism and employment. And if you want to reach out to me via email, it’s simply my, my first name dot my last name @gmail.com.

 

HM:

Awesome. So we’re really excited to have Carly here. And I think that that kind of wraps up our discussion and I know that I learned a lot and I’m so grateful for you. So for the rest of us, be sure to check out different brains.org and 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 find me on all major social media @Haleymossart or at Haleymoss.net.

 

LB:

I can be found at CSIexperts.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.