52. Embracing Late-Diagnosed Autism: Wendela Whitcomb Marsh on the Journey to Self and Overcoming Societal Myths

When Dr. Wendela Whitcomb Marsh graces our podcast with her presence, the air fills with an aura of deep understanding and connection, characteristic of her dedication to the world of autism, especially in women and girls. Today, she returns to share her expert insights on the often-overlooked subject of late-diagnosed autism, through a conversation brimming with wisdom and empathy. Listeners can expect to unravel the layers of what it means to discover one's autistic identity later in life, with discussions on the challenges, misconceptions, and the profound sense of self that can emerge from such a revelation.

Our dialogue with Dr. Wendy, a beacon of hope and guidance for many, takes a turn towards the personal as she opens up about the day-to-day experiences of autistic individuals. She sheds light on 'masking', a survival skill honed by many autistic women to navigate a world that often misunderstands them, and the unexpected relief brought by the isolation of the pandemic. The intricacies of entering the workforce, forming relationships, and embracing motherhood as an autistic woman are all topics that Dr. Wendy discusses with clarity and compassion that will resonate with listeners from all walks of life.

In a deeply moving segment, Dr. Wendy draws from her own moments of love and loss to offer solace to those walking a similar path. She recounts her journey through grief with such honesty that it becomes a universal story of human relationships and the resilience of the heart. This episode isn’t just a podcast; it's a shared experience, inviting us all to understand and be part of a community that values every spectrum of the human condition. Join us as we navigate these profound topics with Dr. Wendy Whitcombe Marsh, whose voice is not just heard but felt throughout this powerful conversation.

Learn more about Dr. Wendy, schedule a consultation with her, or check out her published books:
https://telewellnesshub.com/listing/wendela-whitcomb-marsh/

Transcript

Speaker 1: 0:05

Welcome back Wonderful listeners to the Tell-A-Won-Us Hub podcast. I'm Marta Hamilton, your host, and today I have the pleasure of speaking with Wendellaw Whitcombe Marsh. I'm so excited to talk with her. She's a repeat guest and she's an award-winning author, sought-after speaker and autism expert, specializing in late-dianos autism. She's also the founder and CEO of Adult Autism Assessment and Services a narrow diversity affirming group practice providing assessment for autism and ADHD, counseling and life coaching nationwide. Her books include recognizing autism in women and girls and the series Adulting While Autistic. Thank you so much for coming back onto the Tell-A-Won-Us Hub podcast.

Speaker 2: 0:49

Oh, it's always lovely to be here and chat with you. Thank you for having me.

Speaker 1: 0:54

I really was excited to see that we get to have you back onto the podcast because I wanted to dive into the female. You know last month when this airs. Last month there was an episode on ADHD in women and, with your expertise as an author group practice owner in the area of autism in girls, I really wanted to dive in and give people an opportunity to learn more about that topic. But before we dive into that, why do you do the wellness work that you do?

Speaker 2: 1:31

Well, I love that question. I think most of us are led to this kind of work because we like people, you know, and we want to help people, and each of us goes in our own direction about what kind of people we want to help. And for me, I was always interested in autism, back when I was a teacher my first 20 years of my career I was a school teacher in special ed and autism was the most interesting thing. I didn't realize for years that in fact my late husband and two of our three children now grown were all late diagnosed with autism. We just didn't know that because we used to think autism is just a severe thing and it's just mostly little boys not, it can be adults who have masked for years. So I learned a lot about that and then met more people who really struggled to get a diagnosis for autism. They knew that they were different and they didn't know what was going on. They thought something was wrong with them but they were just autistic all along.

Speaker 1: 2:45

And I feel like you know, so often I, in my clinical practice as a therapist, I've met different individuals who share such a wide range of emotions when they get a diagnosis late, later on in age, versus, you know, in childhood. What have you seen comes up in terms of people's reactions, questions, when they get a later diagnosis?

Speaker 2: 3:15

I like that question because so often we get relief and joy. We usually say something like congratulations, you're autistic. Because the person has always known that there was something very different about them and they might have thought they were broken or they were just really bad at being a friend and they didn't realize that the reason they're different from everyone else is because their brain actually is different. It's not that they're overly sensitive to the sensory world, excuse me. It's that their senses are different, so they perceive heat or cold or sounds or smells more intensely than the rest of us do. So it's not that they're weak, it's just that everybody else is not working as hard.

Speaker 1: 4:09

I love the way you frame it. I know from our past conversation and just knowing you as a colleague, that you have such a heart to empower and even the languages empowering language and even with receiving a diagnosis as a celebratory experience. You know. Congratulations, you have autism because I think you're right, there have been historically certain preconceptions of what it means to have autism and confusion and lack of clarity regarding symptoms when it comes to sensory and severity and a scale and differences that even individual differences that exist even within the diagnosis, and I love the empowering language that you use when it comes to diversity, just the neurodiverse nature of autism, which is a brain based. We know diagnosis.

Speaker 2: 5:13

That's right. It is a difference and although the DSM calls it a disorder, we don't see it that way, as a neurodiversity affirming practice. We see it as there's nothing wrong with being autistic. It doesn't mean it's not hard to be autistic in a neurotypical world, because the world was set up by people in the neuro majority, not by or for autistic people. So it can be hard, but that doesn't mean that they can't succeed and live their best life.

Speaker 2: 5:42

I talk about, I work with and I talk about late diagnosed autistic people, and I know that there is a it's a wide, wide spectrum, and that there are people who no-transcript um are identified as toddlers and who may never learn to use their voice, to speak, and who may never learn to take care of themselves, um. So I don't want to minimize the challenges that they and their families face, but my specialty is those people who have gotten all the way to adulthood without being recognized, because they were able to observe and imitate and, you know, fake being normal, you know, and try to put on an act, wearing a mask, as it were. So I just wanted to say that and go ahead with your next question.

Speaker 1: 6:25

Oh yeah, no, and I appreciate you saying that because I think, uh, in in the past, I think we both had shared an experience working with autism or autism research or behavioral therapy and immersing. So there there are really unique challenges and difficult challenges that a lot of individuals, and parents in particular, right if they're experiencing that in an early age um face. And I think there's such an importance, though, for space for people who might not be identified, like you mentioned, until adulthood. So I'm I'm so grateful that you're there to to fill that need, um for supporting people who get diagnosed later in age. Because so my question was for listeners out there or someone like myself who wants to be an ally for a neurodiverse autistic community what? What are some things that we could be aware of when it comes to um recognizing, honor, create, honoring, creating space for symptoms or for people who have this diagnosis that we're encountering on in a day-to-day life, in the workplace, as friendships? What are some some things that you could recommend for those who want to be an ally?

Speaker 2: 7:45

I am so glad that you asked that because I know there are a lot of people who really have a heart to be an ally but they might inadvertently say the wrong thing. For instance, if your friend comes to you and says I just found out I'm autistic, or I think maybe I'm autistic, uh, many people their first thought towards our friend is to say, oh no, you're not, you're fine, there's nothing wrong with you. Um, but then that would imply that there is something wrong with autism. And then if they get their diagnosis, it's like well, I guess that friend thinks there's something wrong with me now that I know that I have autism. So, uh, rather than saying oh, you don't look autistic or you're fine, you're not autistic, I would say ask them. Well, first I would say thank them for sharing that with you, because probably they had to think about a long time and they really trust you. If they shared that with you, that means you are a trusted friend or family member. So, first, thanks. A lot of vulnerability, yes, the vulnerability, exactly. They. They trusted you enough to be vulnerable. And then you can just ask them to tell you, tell you more about it and listen. I think the number one thing is to believe them, not to discount it and say, oh, everybody's like that or it's no big deal, but to believe them. And then once you, once you, you know, have crossed that border of I'm autistic, uh, you know, and now you know they're autistic, uh, uh. The other time it's important to believe them is like if you're going somewhere, to a restaurant, and they find that they can't be in that restaurant it's too loud or it's to the smells or whatever, um, it's natural for people in the neuro majority to say, oh, you can do it, just tough, tough it out, you know. But usually they haven't brought it up until they are at the very edge of their ability, of what they can do.

Speaker 2: 9:44

I remember years ago, when my kids were, um, still teens in the 20s, we were just finding out about autism. We went to a restaurant and we walked in and had high ceilings and you know, you could hear, you know you could hear the sound of the kitchen with the dishes and all the people talking, and my youngest walked up to the opening of the doorway and then just seemed to bounce back, as if there was cellophane and it just he just bounced back and stayed outside the door after the rest of us walked in. So I said, uh, is there a problem with this place? Do we need to go somewhere else? And they said, oh no, don't worry about it, I'll just wait out here until you're done eating, like, no, we're not going to have one child wait outside until we're done eating, we're all going to go to a different restaurant that everyone can be in. Um. So I didn't say, oh no, you have to come in, you'll get used to it, come on in. I just believed him.

Speaker 2: 10:44

And you know, in years past, before I knew about autism, I'm sure I was often making the wrong choices there, but I guess uh was my angel who said do the best you can until you know better and then, when you know better, do better. So over the years I've grown to know better. I'm sure there will still be more knowing and bettering for me to do as I continue to go through life, but uh, to just once we know. Then we need to do the right thing and listen to them and respect. If they tell us what they need to just say okay, then we're not going to go there, we're not going to eat, that we're not going to, whatever it is that they find that they just cannot do.

Speaker 1: 11:27

I am so grateful that you're willing to share as you learn and as you grow and you say now I know and I want to do better. I'm so grateful that you're willing to share with everybody through your books, through your work, through your practice, because you never know how it may transform someone else's lives Just listening and working with you, and how that might have a trickling effect for others. So I'm very grateful. I'm curious, now that you're an expert in this field and you've written books, what are some things, some differences, when it comes to autism in girls?

Speaker 2: 12:06

specifically. I'm glad you asked that. Excuse me, so many of the people that come to our practice. The vast majority of them are women or non-binary or trans people. There is a much higher percentage of trans people in the autism population as compared to the neuro-majority. Whatever it is in the DNA that says one thing, says the other thing. I don't understand all the genetics, I just know what we have learned. And so many of these women have been told oh, you can't be autistic because you looked at my eyes, or you can't be autistic because you're married, you have a family, you have a job. Well, autistic people get married and have families and have jobs. My late husband was autistic. We got married, we just fell in love. One woman in fact told me that she went to another, to a neurologist, and went through a very lengthy, very expensive series of tests and at the end of this whole time, the doctor said to her all of your test scores are within the range of autism, but I'm not giving you the diagnosis because you're married and you have a job. Well, he knew that she was married and she had a job before. He charged her all the money to take all the tests, but he discounted the tests based on his own idea. He had an idea that autistic people can't get married and have jobs.

Speaker 2: 13:43

Some people have an idea that autistic people don't make eye contact. Well, most of the autistic people that I know don't enjoy eye contact. It's not natural for them and really we listen with our ears. So it doesn't make a lot of sense that that should be so important to those of us in the neuro-majority. But when you have a client or a patient who says they think they're autistic and they're looking at your eyes instead of just taking that at face value and saying, oh well, they can make eye contact, so they can't be autistic, which is that's not the way the diagnosis works in the DSM, you can't have one thing. That just cuts out the whole idea.

Speaker 2: 14:24

But a lot of people don't ask follow up questions like what does eye contact feel like to you, or did you teach yourself how to make eye contact once you realize people expect it? Or do you have a system for eye contact? Some people have like a little standard operating procedure is like I look at the eyes for three seconds, I look away for two seconds, I look back for four seconds, so they're counting silently in their head while they're carrying on a social conversation. That's their system for eye contact. Many people have a system for, or a routine or scripts for, social conversations. So if a doctor just asks, do you have a problem with eye contact or do you have a problem with social communication, they might quite honestly answer no, I don't have a problem with it because I have a system for it.

Speaker 2: 15:14

They created a system and some don't even realize that. Those of us in the neuro majority don't ever even think about eye contact. Nobody taught us when we were babies how to look at our mother's eyes. It was just a natural thing. We don't have a plan when we go into a social conversation. We just wing it. I've had clients be shocked when they heard that it probably feels a little unfair that they have been working so hard in every single yes it's like a lot of work to have a system like that.

Speaker 2: 15:47

Yes, it's a lot of work and they're exhausted. But it's part of masking. The masking is like pretending to be normal. I can't even say normal without the finger quotes. But they worked so hard pretending to be normal that they're just exhausted. If they're doing that all day at work, they would come home and they'd be done. They wouldn't be able to have any strength left to do fun things. Many of them find that working from home is like the best thing in the world. When the pandemic came and everybody worked from home, that was wonderful for a lot of autistic people. And when they were being forced to go back to work some of them that's when they realized how hard it was. And when they heard other people talking about how excited they were to go back to the office, they noticed how very different they were, and that's when many people started seeking out to assessment to find out why they reacted so differently.

Speaker 1: 16:50

Yeah, I can imagine that working from home now alleviates a lot of external stimuli and unpredictability when it comes to someone popping into your office and a lot of different factors that can come up.

Speaker 2: 17:06

Exactly, there's so much going on in an office.

Speaker 1: 17:12

That's very true. Well, that kind of brings me into a segue of if you have girls who are autistic as they enter into adulthood you brought up. A woman came in and the neurologist had done all these tests and said, well, kind of discounted, based on his own or his over right, his preconceived notions about what it takes to be classified as having that diagnosis, and because they were married and had a job, they didn't qualify according to their own preconceived notions. What does it look like in terms of navigating workplace dating, balancing adulthood as a woman, maybe as a mom, maybe as a spouse?

Speaker 2: 18:06

There's a lot to unpack. But starting in girlhood, when the little boys are getting tested for autism, because maybe they flap their hands, they spend around in a circle a lot Girls might be to oh look, she's dancing with her fingers, or when she's twirling around she's pretending she's a ballerina. And even though it's a repetitive behavior, it's not recognized in the same way if it looks slightly different. And some girls, once they get to school, they are better than many boys. A study has showed I didn't make that up they're better at observing and imitating. So they get to school and realize nobody else does this. So then they instead maybe clench their fists or maybe bite the insides of their cheeks or maybe jiggle their leg. They transfer the mannerisms to something subtle, something that does not bring attention to them. And because they hide it so well, none of the teachers would look at them and think maybe she's autistic. They think, you know, maybe she's shy, maybe she's whatever. But so at that transition they're in school and sometimes they get brought into a group of girls that either there's a little girl who's like a mommy type mother hand, who likes to bring somebody on and say, oh, this is how we play this, and kind of bosses them around and they're like, okay, cause they don't know how to play.

Speaker 2: 19:29

And sometimes they get brought in, especially as girls get older. They might be accepted into a group as the lowest social member, the one that the others can kind of tease or make fun of, and often, because they're not good at nonverbal communication or subtle, they pretty much take people at their word. So if somebody says, well, look at your dress, that's really cute, rolling their eyes, they'll go oh, they think my dress is cute because the words were that's really cute, not getting the whole sarcasm thing meaning opposite of what I just said. So they might be getting teased and bullied and not really be aware of it until they're older and they look back at it and many times they think working so hard to pretend to be normal is just what everybody's doing. But they're just better at it than I am and that's why they're so good at it and they don't realize that it's.

Speaker 2: 20:33

They really are different in their brain and in their sensory systems, but girls are better at imitating and the idea that most autistic people are little boys leads to most of the autism tests being normed on a population that's like four males to one female. Oh wow, I didn't realize that's insoluble. And you know they're doing it for what seems to be the right reason is we're looking for this population, so we're gonna match this. But what happens is the girls get missed a lot. The tests don't always capture them. That's one big struggle in that hope, and again, so often somebody might say do you have a problem with the thing? And they might say no. Or if they're going in to talk to a doctor, they put on all their masks and because they are thinking this is an important thing, I have to do my best so they cover up all their characteristic so effectively that they don't get recognized.

Speaker 1: 21:36

I had a thought, you know as these, maybe women are getting diagnosed later on and they've done this masking and maybe their diagnosis has been missed. What about for daughters, or for children? Sons? I just have this, you know where. Suddenly it's like okay, my mom, since you're speaking specifically about women, my mom has autism. Like, how do you ever work, like on a family dynamic in terms of guiding the children of women who get diagnosed and later adulthood?

Speaker 2: 22:19

You know it's interesting. You ask about mothers and daughters because quite often adults come to us because their children were diagnosed first and they might have resisted that saying that's all normal behavior. That's exactly the way I was as a child. Isn't that just normal kid behavior? And when they're told no, it's not normal, I mean it's normal, whatever normal means, but it's not the same as the majority, it's not the neuro majority. Therefore, they decide to look for themselves to see if they are and certainly parenting and I've never been an autistic parent.

Speaker 2: 23:00

I shared parenting with an autistic parent. I co-parented my late husband being autistic. But I have interviewed many people when I wrote parenting while autistic women autistic women with their sensory needs they might have a very different experience of pregnancy. It might be very, very difficult for them to deal with how different your body is and that there's something else moving, someone else moving inside of your body and they might get you know when they have a baby and a toddler. They might get all touched out where it's like and I think this also happens with a normal majority of mothers sometimes during those years but it's like I cannot be touched anymore. I've had this child all over me. I've been nursing for so many hours and now I need my spouse to just take the baby for a while and again. That's not just autism, but it can be more pronounced.

Speaker 1: 24:00

I could imagine more amplified.

Speaker 2: 24:02

Yeah, I felt like for my kids, for my autistic kids, having an autistic dad was great, even though we didn't know at the time. I found out later that he had given them tips. You know, like dads like to give tips to their kids about life. One of the tips he gave them was you know, if you look right between somebody's eyes or like at their glasses, they'll think you're looking at their eyes and then you don't have to, you know, make eye contact. You know, and the two autistic kids? But oh, good advice. I don't know what the non-autistic kid thought, but that kind of advice was very important for autistic kids to hear. I just think there's a level of understanding that an autistic parent brings to raising an autistic child or any child. You know, you might not have an autistic child.

Speaker 1: 24:54

Right, yeah, I know, but I was just curious. Yeah, I forgot that you have that book too. So I feel like, for anyone listening and is looking into navigating all aspects of life, from childhood parenting, your book on adulting and navigating dating. I actually, you know I should have researched this before this, but I saw this browsing through Netflix and I saw there's a dating show or like a documentary on Netflix about dating.

Speaker 2: 25:24

It's called Love on the Spectrum.

Speaker 1: 25:27

Yes, have you watched it? Do you recommend it?

Speaker 2: 25:30

I liked it. I don't know if every autistic person would feel the same way. People have their own opinions. I liked it because it gave me hope to see autistic people, you know finding people and not everybody finds somebody. And you know, sometimes it's like we'll have one date but that's not it and some of us on the couch are going you should give her a second date. You were just too nervous the first time. It's like we're talking back to the empire on the game. I like because it's optimistic and so I enjoy watching it because I'm a romantic at heart. My husband and I were very deeply in love. We were, you know. We had a very, very happy, happy marriage for, you know, over a quarter century, and now he's been long enough since 2009 that I can talk about him and remember the beautiful parts without, you know, a knife in the heart like the first few years.

Speaker 1: 26:34

Yeah, I'm sorry about that loss. I didn't recognize that, but I just I'm so, I'm so touched. You've mentioned your, your husband, many times and I can hear just the love and I'm so grateful that you're willing to share or just kind of inside glints about your own family life and and your, your relationship together, and how it's led to such a beautiful, beautiful opening for the world to gain greater insight and how it may touch other people's marriages, relationships, romantic and not, you know, friendship, dating, classroom, all of it. So, as always, wendy, I'm so grateful that you were willing to come on here and that you are part of our wellness journey. How can people get in touch with you?

Speaker 2: 27:29

Well, I think that there's a link on the tele wellness hub. If you wanted to email me, you could email me at Dr Wendy, dr W E N D Y at adult autism assessment dot com and tell me that this is where we met through Marta, so so that I know where we met and I'm happy to. If you have a question or anything like that, go ahead and email me.

Speaker 1: 27:57

Yes, I love that. Please do connect with her. She's for me. It's been wonderful to connect us as colleagues and I always enjoy conversations, so thank you again. We'll make sure to put everything in the show notes so you guys can connect. And thank you again truly for being a part of our wellness journey.