WPC Ep.10: Exploring Neurodivergence with Dr. Elaine Willerton and SarahRose Hogan

Join Dr. Aurélia Bickler and her guests Dr. Elaine Willerton and SarahRose Hogan as they explore the world of neurodivergence.

Resources: 

https://neuroclastic.com/

https://thinkingautismguide.com/

Ido In Autismland, Ido Kedar

Neurotribes, Steve Silberman

Unmasking Autism: Discovering the New Faces of Neurodiversity, Devon Price

I Will Die on This Hill: Autistic Adults, Autism Parents and the Children Who Deserve a Better World, Meghan Ashburn, Jules Edwards

Parenting at the Intersections: Raising Neurodivergent Children of Color, Jaya Ramesh, Priya Saaral

My Brother Otto, Meg Raby (kids book)

Instagram Content Creators

@myautsiticsoul  @rdorseyslp  @mrsspeechiep  @learnplaythrive. @breakwithshaiden  @brainsandspoons  @connor.dewolfe  @kaelynnvp @online1roomschoolhouse  @a_different_spectrum  @toren.wolf @jeremyandrewdavis

Transcript

SPEAKER_00: 0:00

Welcome to the Whole Person Center podcast. Our mission is to improve the human condition by providing resources, research and training opportunities, and direct health services while supporting the development of highly competent professionals. Tell us a little bit about yourself and your background and why this topic is important to you.

SPEAKER_01: 0:39

Absolutely. Well, I'm happy to be here. My name is Elaine Willerton, and I'm a licensed marriage family therapist, but I'm really here as a mom. I'm the mother of two neurodivergent children, a son who is autistic and mostly non-speaking. And that is sort of what brought me to the world of neurodivergence. And so my personal interest in advocating for my children has evolved into my desire to be an advocate in my community, including my professional community. So that's what really what introduced me into the world of neurodivergence. And I can talk about that in more detail because really my professional training in that area was just skimmed the surface.

SPEAKER_00: 1:36

Well, I can't wait to learn more about all of that. Sarah Rose, tell us about yourself, your background, and why this is important to you.

SPEAKER_02: 1:44

Ah, so happy to be here. So my name is Sarah Rose Hogan. I'm a clinical social worker and group practice owner in Kingston, New York, and we center disabled and neurodivergent trauma survivors, primarily with EMDR, which I'm also a consultant and instructor for EMDR therapy. On top of that, I'm assumed to be, hopefully by the time this comes out, registered play therapist and involved in the play therapy community, really passionate about bringing the therapeutic powers of play to the disabled and neurodivergent community. Why this is important to me. When I was in seventh grade, I gave my first speech on depression to the class. They didn't love it. But uh but uh I'm just just to say that it's really it's important to me in the way that it's in every part of my life. It brings me purpose, meaning. Yeah.

SPEAKER_00: 2:57

Oh, thank you so much. I I I wish I could have seen the faces of those kids learning about depression.

SPEAKER_02: 3:03

You're like, why are you talking about this here? You know? I was like, well.

SPEAKER_00: 3:09

That's when you know you're passionate about something, right? When it's when it's in your it's in your blood since you're you're a tiny little human, it's beautiful things. So help us understand what the term neurodivergent means.

SPEAKER_02: 3:22

So neurodivergent to me, simply put, is a brain difference, right? And I'm really passionate about it being an inclusive label, and we can talk more about that. Um but we can think about it in diagnostic terms, which often people do, which so that includes people that are autistic, ADHD, OCD, but it can also include non-diagnostic labels such as aphantasia, which is not having a visual imagination. So we kind of tend to think of things like imagination as all one thing. Everyone imagines things in their brain the same. And that's just not how brains work. There's more variety and beauty to them.

SPEAKER_00: 4:03

Hmm. Thanks for that. Elian, anything you want to add to that?

SPEAKER_01: 4:08

I love that that definition from Sarah Rose, and I think that that is so helpful. Sometimes you'll see the term neurodivergence depicted with an umbrella and a bunch of different disorders. I'm putting that in quote disorders underneath it, PTSD, autism, ADHD, but it is more than that. It really, I hope people will take away that it it's brain difference. It can be having a different well, and when we say different, is there any more air quotes normal way of thinking? Um and that's that's the takeaway here, I think, is that neurodivergence is um really vast. And I think we're gonna talk about um the term spectrum here in just a minute, too, and what that can mean.

SPEAKER_00: 5:14

Yeah, I appreciate you leading us to the next part of this conversation, which is when I think of the word neurodivergent, I feel like there's so many different uh ways to interpret that and uh to identify with that. And I guess my question is is there a spectrum that this lives under? And if so, how wide a spectrum is it? And how how differently do people experience newer divergence based on where they land in the spectrum? And I know I'm asking a million questions at once, but I feel like it's a giant concept that feels difficult to sometimes fully grasp. So I would love your thoughts.

SPEAKER_02: 5:59

Yeah, so I think when we hear the word spectrum, I think about that like um almost in a way of like low needs, high needs, right? Like a timeline. Um, and there's I get why that is, because we're in a culture where we're kind of fighting to get our needs met, unfortunately, right? And we need to prove who needs what, and we kind of need those labels for that. So I often think of um like what is the benefit of having that kind of thought process of like more needs, less needs, and that is giving people that have needs access to resources. And I'm really passionate again about including in this conversation about neurodivergency centering and including people that are um most at risk of harm and receive the least amount of services, which are people that are like non-speaking, have an intellectual disability, um, or have other barriers to care. Uh at the same time, you heard me say that I'm really passionate about it being inclusive, right? Um, and I think about it like with any any diversity, we think about the term neurodiversity, which really means brain variety, right? Like all these varieties in the world. Um, and how kind of silly it would be to think about wanting to limit other forms of diversity. Like imagine if you were like, we we um we want cultural diversity, but we're gonna say what that is, and we're gonna like put a limit on that, and how that starts to feel like kind of silly. And I feel similarly with neurodiversity.

SPEAKER_00: 7:43

But you also highlighted a really important point is that when we think of spectrum, we think of it in a linear pattern. But what I think I heard from you is that it's not linear and that there's so many different versions and realities that live under an umbrella. I think Elaine used that word earlier, and it's a better, it's a better word, right? Like that umbrella of neurodivergence and and how it's not a one size fits all um type of thing, or one size fits towards a certain direction. There's there's multiple directions, if I if I understand your point correctly, is that right?

SPEAKER_02: 8:20

Totally. I honestly like more than the umbrella, the term the what you're gonna hopefully speak to, Elaine, um that other analogy. I kind of prefer that because even with the umbrella, it's like some people are under and some people are out.

SPEAKER_00: 8:33

Yeah, good thing.

SPEAKER_02: 8:34

Right?

unknown: 8:34

Yeah.

SPEAKER_01: 8:35

Yeah, I shared with Sarah Rose um in planning for this that the image I like instead of the linear spectrum is a picture of the universe, the night sky, um, the diversity of all the stars and the planetary bodies, and how that to me is a more accurate description of how differently our minds can work. But at the same time, out there in the universe, you might see other planetary bodies that um resemble you, or you know, you might look around and and see, oh, you you um sparkle the way that I sparkle, or um you act a little bit like I act. So um even as different as everything is out there in the universe, you might still um find, you know, find community and find resemblance. And I I love that to think of it like that.

SPEAKER_00: 9:39

I love that element of connection that you're bringing up here and that that uniqueness and connection coexistence is so beautiful. And um, and I love your analogy. If you sparkle the way I sparkle, I think that's so cool. It makes me emotional to hear that. Um so I'm curious if our listeners are either listening to this and thinking, I want to learn more about this, um where does one start? Because it's such a big universe, like where does one start finding resources, finding uh, you know, books, people to listen to? Where's where where's a good place to start, or where are good places to start?

SPEAKER_02: 10:27

You know, I actually took a year off when I graduated from undergrad, right? Before graduate school, I was deciding what I was gonna do. And I was thinking between social work or actually going into ABA, because at that point, this is 15 years ago now, I had wanted to work with the autistic community and thought that was my only avenue because I was told that's how what I was shown in school, like this is how you could work with folks, right? Um, and I ultimately made the decision to go into social work and I was like, I'm gonna find my way to still work with my people. Um, and I'm happy I was able to do that. But to your point of this question, I think when people are look like searching for information, um, the place to look is from the community like you're wanting to learn about directly. So I encourage people to look for folks with lived experience, um, folks that are advocating for the community, and to also um look for sources outside of your cultural background or community, um, and from your community, right? But to just be thinking about what is the range of folks that I can interact with, how can I see how people are engaging with this content and these labels and these thoughts differently. Um, and I I have some suggestions and thoughts for that that maybe we could like post with the podcast.

SPEAKER_00: 12:00

Yeah, and feel free to to talk about those too. I mean, we'll definitely post them with the podcast, but um, if there are particular, you know, websites or whatever it is, resources that you think could be helpful, please feel free to tell us.

SPEAKER_02: 12:14

Sure. So I I'm a well you can't see me, but I'm a white person. Um so it was important to me to learn from communities outside outside of my own and communities that are less represented in this material, right? Um, in especially in the like professional or academic realm, unfortunately. So um autistic typing is a Native American writer who writes a lot on neurodiversity. Um nigh functioning autism is a black creator who does a lot with the non-speaking community. I believe their child is is non-speaking. Um I also really appreciate the lived experience educator. Their name is Sony Jane, they're out of Australia. And they they've um wrote the Neurodivergent DBT skills workbook, which I love. Um, and they also have another book coming out that's um named We're all neurodiverse, which is cool. So um just to name a few to check out.

SPEAKER_00: 13:20

It's funny because that piece, we're all neurodiverse, that's been like sitting in the back of my mind a little bit. I would I would say according to society, I'm I'm I'm neurotypical. And yet I always think to myself, like, I don't know that the way I think is the way people think, so the way I feel or the way my brain functions is the way other people, uh, people's brain functions. So I I that that's I I can't wait to start with with that from somebody who doesn't, um, who's not as familiar with with this area of our field. Um I'm looking forward to understanding more from a place of okay, I can relate to here and then take me somewhere, take me, bring me, open my mind, open my my knowledge base. So um, and then I guess um Elaine, I want to open it up for you as far as if you want to share. But another question I have for you both is if somebody is listening to this and thinking, okay, I've always suspected that maybe I am neurodivergent, like what are there places that people can go to? Are there resources that people can reach uh that that might answer questions they have or might even just begin their journey and trying to figure out their uh their neurodivergence?

SPEAKER_01: 14:39

So if you believe you may be neurodivergent, I think that there are a couple of avenues. There's research you can do yourself, and of course, there's a bit of debate about self-diagnosis. I personally feel it is completely valid. I don't mean you watch a few TikTok videos and decide I have fill-in the blank acronym. I'm ADHD, I'm OCD, and I don't mean to be flippant about that because a lot of people toss around diagnoses like that. But I do feel that self-diagnosis of neurodivergence is is valid with careful research and consideration because you know yourself. And I'm talking about being an adult here. Um, many people grew up being told you're too much, you're too loud, you're too hyper, you're too fill in the blank, you're strange, don't think that way, don't be that way, don't talk that way. We've learned so much over the years, and now we have different understanding. And and Sarah Rose, feel free to jump in here. This is your bailiwick. Because getting a professional diagnosis is it's very time consuming. Clinicians are backlogged. In every state it differs. Who can diagnose autism, ADHD, and different things. And if if you need that professional diagnosis for a specific reason, for a purpose, then I feel you should get that. But if it's you know, to be able to make some own your own adjustments in your life and you want to diagnose yourself, then I think that that is valid. But I'd love to hear Sarah Rosa's thoughts on this.

SPEAKER_02: 16:32

I used like used to ten years ago be like, no one can self-diagnose. You haven't been to school like I have, right? Had this this thing about it. And um that was wrong of me, and I'll tell you why. Um if we that assumes everyone has the same access to diagnosis. They do not. There is very, very limited access to um diagnoses, especially autism or ADHD, especially autism and ADHD, but autism primarily. So if you are uh a community of color, if you don't have a significant financial resources, if you're not in a certain part of the country, if you don't have a provider that has up-to-date information about autism, um it's you can't get it. So how can we say you uh like I just to me it doesn't make sense, right? We can't say you can't be here unless everyone has that same access. Um if someone was curious about a label, I would be like, again, using that thought of currency, like kind of what you're saying, Eileen, like what are you looking for in your life for this? So if you need accommodations in your work environment or school environment, you need something to show that you have to have that. You need a diagnosis for that. If you're looking for yourself, for your friends, um you don't, then some people still might want it. And if you can get it, go for it. But my hope is someone listening to this wouldn't keep themselves from the gift of accepting and loving yourself and accommodating yourself. Um, because it's really life-changing. Yeah, well said.

SPEAKER_00: 18:23

And it sounds to me like that too is not a linear process and figuring out what's going on and the way our brain works, and and that looks different for everyone. Their journey to getting the resources, the support that they need is not, unfortunately, is not a is not as simple or affordable or uh directive or or linear in any way.

SPEAKER_01: 18:53

It's it so the journey looks different for each individual, it sounds like and I would still encourage folks to work with a neuro-affirming clinician, even if they can't diagnose them, because unfortunately, when it comes to you know sharing with loved ones, you know, I believe I'm neurodivergent, um they may not always have an as easy a time accepting it. And so I think having the support of a clinician uh can be really useful in this case.

SPEAKER_00: 19:25

So yeah.

SPEAKER_02: 19:27

And the oh, so sorry, the way that so this neuroaffirming with with diagnosis and traits, right? So important to what Elaine just said because I find families are often pushing against the individual's need or label because of internalized ableism, because that means something to them about their loved one that they don't want to be about their loved one, right? And I get that. I get that. Like I have so much love for that because um we're working very hard as a community to improve how we treat neurodivergent and disabled people. Um so having a provider or a therapist that um it speaks to you about brain difference in a way that is accepting and celebratory and working with your difference instead of expecting that to change are some ways that you can kind of feel out someone's affirming beliefs. Yeah.

unknown: 20:27

Yeah.

SPEAKER_00: 20:29

That's powerful. Um that that that piece on the family dynamics and what you know each person internalizes and such. I feel like that could be a podcast in itself, I'm sure. Um, but it it brings me to you to something, Elaine. I think you uh you mentioned wanting to share. Um, as far as resources were concerned.

SPEAKER_01: 20:51

Uh yes, so I I wanted to talk about resources from the standpoint of a parent and when you receive a diagnosis for your child. Um, I just remember going through that. My uh autistic son was diagnosed when he was two. Um and that that was through the medical system, and that was a a very overwhelming process for us. And I think what happens for most parents is when you receive that diagnosis, you're sort of given a very big packet of information. And the advice to most parents is the best thing you can do for your child is uh enroll them in 40 hours of therapy a week. 40 hours of ABA therapy is gonna be the best thing you can do for your child. And here's the best book you can read, and you need to start in speech and occupational therapy and physical therapy. Um and this is just like, well, when am I supposed to work? And how you know are we gonna afford all of this? And so it you know, you go from thinking, oh my cute little two-year-old ha has a speech delay to now I have all these diagnoses and labels, and oh my goodness. So I didn't listen to any of that. I'm here to tell you. Something in my mama bear stomach just said, this is not what I want to do. Um, and so I went, I kind of did what Sarah Rose suggested, and I went to the community, but I didn't really even have to leave the house. I found community on social media, and I know a lot of people are gonna think, what? How did how does that work? Really, there are just uh amazing neurodivergent content creators out there, and I just looked around until I found the ones that resonated for me, and I felt like I gave the best voice um and were diverse because I I am a white person, but my uh my family is not white, uh, my husband is uh Hispanic and my children are Hispanic. So to me, it was very important that I find diverse neurodivergent voices to help me make good decisions for my children, especially having a child who could not speak. And and from there I just felt like the guidance was was so helpful. And I will also let you know I'm a marriage and family therapist, but I find a lot of guidance from speech language pathologists, occupational therapists, physical therapists who are neuro-affirming. So that for me, again, content creators. I never thought Instagram would be um so important in my life, but those little daily doses are just part of my, I call it part of my diet. And it's it's easier for me. I don't have time to sit down and read books. I think I did all my reading in graduate school, and right now I'm just too busy with you know, trying to do my full-time job and then attend to my family. So if I can sit down and scroll and take in little bits of information through Instagram, through these um autistic and neurodivergent content creators, for me, that's how I best can learn, unlearn, and relearn neuro-affirming practices to integrate into my life.

SPEAKER_00: 24:57

It's so um so I am also a marriage and family therapist, and hearing what you just shared, Elaine, made me think about the way that we can create our story. And when you uh spoke about the different communities that you sort of, you know, joined through this process and learned from, and then sought out uh mini content that that really helps you and your family shape the life and the story of your lives in a meaningful, supportive, loving way. I think that's such a powerful thing to walk away with from this conversation, is that being neurodivergent is being a human being trying to make your story meaningful to you, like all human beings have in common in the world. Uh, and I just there's there's such beauty in that. And I also love that you pointed out that it doesn't mean you have to give up everything to do the 40 hours a week. It you can make what works for you happen to create the story of your lives, and that's I find that encouraging. I find that sort of it gives me levity um to think of that. And so I want to thank you both so much again for joining us today. Uh, is there any final note that you want to make sure to put in there that we didn't get to touch upon before I close us out?

SPEAKER_01: 26:34

I will I should go back and add, there are a few books. I it's like I never read a book, but I'll be sure to um list some good books um that I think are useful as a parent or just anyone who um is interested uh and websites as where neuroclassic is a great resource. Great. Sarah Rose is nodding, so I know it's uh it's approved. Um I love everything uh from that website. That's been a great guidance for me.

SPEAKER_02: 27:12

I have a message to somebody if they think they're neurodivergent. And it's to think about this idea that like, what if we've all been lied to that things are moral failings, which is really just how your brain works. So if throughout your life you've been like, why am I so lazy? Or why am I so careless, right? Or why am I so weird, or why am I so dumb, or why can't I spell restaurant after 10 years of trying to spell that word, you know? That um maybe you're not those things, and maybe we just don't understand how your brain works. And I hope everyone can take that invitation to just be gentle and curious with themselves about those labels. Yeah.

SPEAKER_00: 28:01

What a beautiful way to close us um to close this conversation. And I I appreciate that um that grace gets us all through um challenging times, which we all need.

SPEAKER_02: 28:16

So again, I want to- Oh, so sorry, I still can't spell restaurant in case anyone's wondering.

SPEAKER_00: 28:22

I had a feeling that was a personal thing when you said that. Um that's fair. That's fair.

unknown: 28:29

That's fair.

SPEAKER_01: 28:31

Exactly.

SPEAKER_02: 28:32

Yeah, exactly. I use a lot of literacy tools. That's my that's my accommodation. Yeah.

SPEAKER_00: 28:38

I love that we have those tools, right? I often think about the time that we're we exist in and how it allows us to do more things than maybe 50 years ago or 30 years ago or so. Um anyway, well, I want to thank you both again so much for joining me today, for sharing both from an academic professional perspective, but also from your personal stories and um with such a vulnerability. And so uh I appreciate it more than I can say. Thank you so much. Thanks to all our listeners. Um, until next time, take care of yourselves mentally, emotionally, and physically. Au revoir.