Speaker Series: Full Episode Page

The Autistic Brain by Temple Grandin

Emergence: Labeled Autistic by Temple Grandin

The Spectrum Girls Survival Guide: How to Grow Up Awesome and Autistic by Sienna Castellon

Uniquely Human by Barry M. Prizant

Communication: What Does it Mean to Me? by Catherine Faherty (workbook)

Film: Greta (documentary about Greta Thumberg)

Helpful therapeutic resources: Mood Cards, Basecamp Card Company

Brenda 1:27
Today we have a guest with us who’s going to talk on a very interesting topic that I’m excited to hear about because I don’t know a whole lot about it. We’re going to be talking with Sarah James, who’s the primary therapist at trails Carolina, which is one of our wilderness therapy partners at Sky’s the Limit Fund. And and we’re going to be talking about neuro diversity, and specifically some concepts and information about neuro diversity in girls. So I’m really excited for this topic. And welcome, Sarah.

Sarah 1:59
Hello, I’m happy to be here.

Brenda 2:01
This is going to be a really interesting topic because I have heard about it but I don’t know a lot about it. I have heard that there are some really unique nuances about neurodiversity and girls, and also some of the struggles that come with that, especially during the adolescent years. I’m thrilled to have you on and to talk about this, why don’t you just give us a quick bio or background, so we understand who you are, and then we’ll dive in.

Sarah 2:31
My name is Sarah James. I’m a licensed clinical mental health counselor and a licensed clinical addiction specialist in the state of North Carolina. I’m the primary therapist at Trails Carolina for a group of adolescent girls aged 14 to 17. And specifically, my group is like the quirky girl group. We’ve got the diversity, often they’re like the introverted, struggling socially, but really desiring social connection have been heavily wounded in that area. And there’s a lot of self esteem and empowerment stuff that we work on along with that.

Brenda 3:08
Yeah. Wow, I just remember being an adolescent girl. And it was so hard, even without the neurodiversity, right. So that’s, it’s just amazing that there’s a resource like this. So before we before we really dive in, can you just tell us what when somebody says, neurodiversity? What does that mean? Because there’s probably a lot of misconceptions about that.

Sarah 3:34
Yeah, and it’s such a buzzword these days. And it’s a really big umbrella term that encapsulates a lot of things. Generally, it it refers to a variety of different diagnoses, and like symptoms that don’t quite fit a diagnosis. So typically, when I say neurodiversity, I’m referring to things in the realm of ADHD, autism. There’s some really specific diagnoses within that category, such as, like social pragmatic communication disorder, where there’s like a specific aspect or list of symptoms that apply. There’s more research about conditions that aren’t like official diagnoses yet, like being a highly sensitive person or HSP. So there’s things like that, that kind of fall under the neurodiversity umbrella, but generally, I think it means a person whose nervous system is wired in a way that what is considered normal in our society is not in alignment with how they see the world or interact with the world.

Brenda 4:51
Yeah, which makes it really hard. Really hard to fit in with all the pressure on young people. Today, and I’m glad that you said that there’s sometimes a variety of symptoms because not really having experience in this area, I was sort of assume that there’s always a very clear diagnosis, and I’m hearing that that might not be the case.

Sarah 5:16
No, especially when we start looking at the nuances of it. Like, sometimes we look at this list, which I can get into what that list kind of is. And parents will say, Oh, that’s my kid. Or sometimes it’s like, oh, well, they do this, but not this. And they didn’t used to have these struggles. And now they do. The whole diagnosis question is kind of a mental health diagnosis in general. But I think, particularly with the neurodiversity diagnoses, can be this kind of like echo chamber, where it’s like, okay, what is ADHD? It’s this list of symptoms. Why do they have these these challenges? Because they have ADHD. We don’t have enough research on the brain and neurology to really, like, it’s not like a physical health thing where you can just point to, like, it’s a problem with your liver or whatever.

Brenda 6:17
Right. There’s no blood tests, basically, that’s going to come back and say, “Oh, you have ADHD or you have autism.” So that’s probably pretty tricky for parents. What are some of the things that might be seen in an adolescent, are there some obvious things that might be seen?

Sarah 6:41
I also want to step back to and recognize that a lot of the families I work with kind of fall into two camps; there’s one camp where they actually have gotten a diagnosis early on and they have done everything they can do to get the all the services and kind of do everything right. And here we are getting to middle school or high school, and we’re still struggling or the things that used to work aren’t anymore. Then, there’s the camp where, this is all new. We’re starting to notice these things that we didn’t really notice before and this is like a whole new world to wrap our heads around. Some of the more obvious things, or kind of more like clinical things like what you might hear a clinician or a book tell you about, you know, signs of potential neurodiversity that can include cognitive and flexibility so like black and white thinking, all or nothing thinking, some rigidity around like their preferences or beliefs. They can be pretty impatient sometimes. Sometimes they struggle with empathy and perspective taking. Another thing can be hyper fixation so either, like the classic autism thing is like really niche interests, and really only interested in needs, like trains or whatever is like the classic example and that’s all they want to talk about. Or maybe they the hyper fixation might be like struggling to let things go like a perceived injustice or something like that. Particularly with, like ADHD or attentional challenges, I think the idea or the stereotype is like, “they just can’t focus”, “they can’t sit still”, but sometimes it looks like they can really focus in the things they’re interested on and it’s hard to get them to shift or give that same attention to other topics. There can be struggles, reading, interpreting or responding to social cues that can be sometimes they come off as like blunt or like really direct kind of abrasive sometimes. Attention deficits can be hard to concentrate, they can appear like scattered, disorganized, have difficulty finishing what they start, a lot of times. Another sign can be sensory sensitivities so like really particular about how clothing feels or different lighting might bother them or being in a crowd or certain sounds might be overstimulating. The last thing I have is emotion regulation so struggling to articulate their feelings. This type of kid might go from zero to 100 really quick in terms of their emotions, or vice versa, like they get over things really fast. And then the more like abstract subjective, nuanced type of things, emotions can be really hard and challenging for them to to understand and cope with. I think that’s why this kind of second camp of we’re getting a middle school, high school age and this is a new thing is often you know, like, high school social relationships get more complex and the the academic workload relies more on critical thinking, problem solving, abstract reasoning so those are the things that kind of, are extra challenging for a neurodiverse kiddo so that’s when things start to get harder is for these teenagers.

Brenda 10:15
Right. And I can see that the pressures of school and fitting in and not acting differently than other kids can be so challenging. And also as a parent, just knowing like, you know, your kid, and that’s just how they are so I can see how you might not think that this is any kind of a diagnosis, because this is just how your kid is, right? And so you start to see, oh, okay, other kids in middle school aren’t doing this, or mine is just reacting differently than other kids could start to sort of raise those bells. And then, are there some things that maybe weren’t as apparent, you would not necessarily recognize, kind of the less obvious things, that you could highlight for us that you would go “Oh, actually, yeah, I’m seeing that”.

Sarah 11:10
Yeah, definitely. And then one thing I want to say about what you just said, is sometimes it gets overlooked because parents are like, “well, I do that too, I’m okay”. Or, they’re looking at their kids struggling, and they’re like, “oh, not everyone does that?”

Brenda 11:25
And especially, I would imagine if it’s the oldest, or if it’s an only child, because you don’t have the contrast maybe to see an another, in a sibling, and that it’s like, well, I don’t know, this is just how they are. And I think we’ll talk in a minute too, about what, you know, kind of the pros and cons of having a diagnosis, because I could see how that would start to get a little complex to say, well, they’re perfectly fine how they are they have these quirks, but there’s nothing wrong, it’s not a disease, right? So, but maybe share with us some of those less obvious signs that a parent might overlook if they’re not aware of them.

Sarah 12:08
Sure. Another way I think about this is like the practical side of how this can actually look or show up in your home. So one sign is pretty common is your kid comes home from school and either has some sort of meltdown, or temper tantrum, or they just like isolate in their room. This is often because it takes a lot of energy, and either white knuckling or masking to get through the day at school and they come home and they are just like exhausted of doing that and home is like their safe place where they can take the mask off and fall apart a little bit. You might start to notice increasing reliance on online social connections or a high volume of screen time or, you know, maybe tech addiction kind of thing. Where the social, the online world socially has more black and white rules and can make more sense to these kids. That’s not inherently wrong, but it can start to get problematic if they’re not being careful about you know, making, verifying the identity of the people they’re talking to, or they’re getting into these like really specific corners of the internet and things like that, or just like the volume of time they’re spending on a screen is interfering with the rest of their life. These kiddos might have like hot and cold relationships. Like yesterday, they were my best friend and today I hate them because they did this one thing wrong. These kiddos can be pretty vulnerable to peer pressure because they so desire that social connection and they really want to fit in and they want to have friends and they don’t. It’s hard, it’s like extra hard. It’s hard for any teenager, but for these kiddos because they struggle with that nuance and the unspoken rules of the social world, they can kind of resort to taking shortcuts, socially. That can look like engaging in some risky behaviors, because that gets them some social connection points. Often they confuse attention with connection, because they get a laugh out of people or because people include me if I say yes, I’ll smoke weed with you and that can be driven by “I really want social connection.” There might be school avoidance or sometimes challenges with school that weren’t always there before. So like I said, when the work starts getting more complex, there’s less memorization, there’s less fact based things there’s less like concrete content in the academic so they might start struggling when before things might have been okay with school. Often, not always, but a big, kind of, sign for me is when a parent tells me “oh, well, you know, she’s 17 but when you interact with her, she feels a lot more like 14 or 13” so like the emotional maturity or the innocence or that naivety might feel a little bit like someone younger. And then sometimes there’s a lack of either body awareness, or like the mind body connection isn’t quite there. An example of that is, I complain a lot of a stomachache and I don’t know, like, sometimes that means I’m anxious, or I’m upset about something, it’s not always like, something I can fix in my body. And then sometimes, too, there’s a lack of tolerance for physical discomfort or like a general kind of lack of resilience or perseverance, particularly when things are physically hard.

Brenda 15:50
Very interesting. I’m sure that for people who are listening, the bells are probably going off like, oh, yeah, that sounds familiar. And I just think it’s great to know, because I’ve had people say to me, “well, I can’t send my daughter, I can’t send my son to wilderness because they have Asperger’s or they’re autistic.” And I would love to ask you about the language to around that, whether I’m saying that, is it, you have Asperger’s or you? I don’t know how to say that. But I think there is a misperception that if if your young person is struggling with some of these neuro diverse things that they’re like, Well, I guess I can’t send them because they’re never going to be able to manage in the wilderness. And so I love hearing that there are people like you who really specialize in this, and that’s your whole group has these. Wow, what is the language? Do you say conditions? I want to make sure I’m using the right language.

Sarah 16:59
And this is such a like slippery slope. Asperger’s isn’t like officially a diagnosis anymore. A lot of people know what that means and so like, colloquially, people still use that but now, it’s just all autism spectrum. And they break it down to level one, level two, level three would be like the most severe and level one is kind of like the classic Asperger’s which is we’re struggling socially, we’ve got some of those fixed interests and things like that but we like, I don’t like the word high functioning, but that’s a word that people will use. I’d say languaging people would be people on the spectrum, autistic individuals. There’s this. I mean, there’s this great empowering neurodiversity movement out there, who are kind of like reclaiming it as an identity like, yeah, I’m autistic and that’s a good thing. Like there’s a huge world and yeah, yeah. So I think as long as you’re not being like, derogatory, there’s not necessarily that I know of a wrong way to say it.

Brenda 18:11
Yeah, well, I always like to ask because I think language is so important, and labeling young people in particular, I think can be in we could talk about that is, is that and then I want to get into girls specifically. But is it you know, if a parent is listening to this, and all the bells are going off? Like yep, yep, yep. Is a diagnosis, first of all, is a diagnosis mandatory? And then, whether or not it’s something that could potentially be a negative? Or could we turn it into a positive for our kids?

Sarah 18:51
Yeah, that’s a good question. I think that’s a hard decision to make is going to really depend on you and your family and your specific needs, I’d say what it comes down to the diagnosis, the purpose of it is to get access to services or medications. So if you are looking at your child struggling in school, and you’re thinking about getting an IEP or something or going to asking for more support in school, a diagnosis will be helpful for that, so that you can qualify for the bureaucratic things. And, you know, depending on the family and the child, the diagnosis might be helpful for that like identity piece, like “Okay, this is a thing with a name and here are now all these books that I can read and other people in a community that I can find”, and it can open up a world where, because I have a name for it, I can find things that I can do about it. Of course, you’re not gonna like cure it. It’s not like it’s not a problem. It’s not something to be solved, but it can be positive in that way where it’s framed in a more empowering light. I think too, kind of, on the empowering positive side of it. A lot of times, especially if we’re in that middle school, high school age, and this is something new that we’re discovering, a lot of times up until this point, we’ve been looking at this child’s behaviors in a way that’s like, oh, gosh, like, why are they doing this? And getting that diagnosis can help shift that thinking about, like, what are the intentions behind these behaviors? And what’s really going on underneath why this kid is struggling? So that can be empowering to shift it that way. And like I mentioned earlier, there’s like a whole neurodiversity movement out there where people are looking at the strengths and the positives, and the uniqueness that can be offered as kind of most diversity things will include.

Brenda 20:53
That’s really cool. I think that’s really, really encouraging too, because I know, just, you know, anecdotally that often these kids are the most brilliant kids also. And so I think it’s really cool to be able to claim that and say, This is my superpower. Yeah, I might have some quirks. But, you know, to be able to find others as well that are like you, could be really cool. I know that we wanted to talk and touch on a bit how this impacts girls, because it sounds like there’s some differences and so maybe just talk a little bit about that, and why it would be important to really recognize those things and girls.

Sarah 21:39
I think this is fortunately something that’s being talked about more but historically, all of the, like for autism, specifically, all of the tests that were designed to make the diagnosis were normed on boys. Because boys are the ones that are like, more likely to act out what’s happening for them whereas girls are more socialized to be good, to be nice and play by the rules, and more likely to value social connections and relationships with other people in a way that that is like a motivator for their behavior. They can develop the skills, like a lot of times, we’ll call it like masking, or I can like get through my day and I can be polite, and I can follow the rules, and I can get an A on my test but actually, that’s what’s going on inside is like a whole storm of difficulty and things and like confusion. Girls just tend to internalize a little more rather than externalize so it doesn’t become a problem until later. That’s kind of the other thing about diagnosis, too, is like is this really impeding your life in a way that a diagnosis would be helpful, or you just like relate to this Lyptus list of symptoms, and you’re like, kind of the parents are sometimes like, Well, I do that, and I’m okay. And that can be true, like this doesn’t mean these symptoms or signs don’t automatically mean, you need to jump to get a diagnosis because it might not be a problem, or interfere with your life. You just might have to like adapt a little and know what you need, and what kind of things suit your nervous system better. But often, for a girl specifically, kind of like I’ve mentioned, high school becomes that age where the academics are more complex, the social relationships are more complex, and it’s a lot harder to do that white knuckling in that masking and things start to kind of fall apart and we realize there are some foundational pieces missing here.

Brenda 23:50
Do you feel like girls are a little bit more at risk for kind of dipping into risky behavior or substance use or self harm or anything like that as a way of coping with this and trying to fit in because there is such pressure to fit in.

Sarah 24:10
Yeah, I think it’s easy to find some sort of community particularly with, like, if we’re really relying on online social relationships, it’s easy to find unhealthy online social communities, or in school social communities, like I mentioned earlier that the cutting or the drinking or whatever is going to gain me some sort of social capital or yeah, I really have no clue how to deal with this overwhelming emotion, I just heard about this other girl who cut herself and I’m going to try it. Things like that can be a real slippery slope for neurodiverse girls. I also want to mention too I want to do this earlier, kind of the language piece. This could be a whole other topic, but I do want to mention that there’s a really high correlation that we’re starting to look more at where typically like girls on the spectrum, a lot of there’s an overlap with gender diversity, too. There’s a whole list of things, we could talk about that but I want to acknowledge the people that I’m talking about right now don’t always identify as girls at this age, and they’re questioning their gender, or they’re relating to more their masculine side or things like that.

Brenda 25:31
Yeah, it seems like that would be a whole other topic, that can be very confusing, too, especially as you get into adolescence. And, oh, my heart just really goes out to these kiddos because it’s so tricky, and for parents, too, to know what to do to not kind of squash the beautifulness and uniqueness and you know, specialness that comes with a kid like this but to help them find healthier ways to fit in. So that you’re not getting into that substance use because I could imagine for somebody who has the awkwardness, the minute you take a drink, wow, that could really solve a lot of those problems in a really unhealthy way. It seems like it can be heightened even more for a neurodiverse young person, then somebody who doesn’t struggle with that, necessarily that awkwardness. So it would just be super complex. So when they get to you, you’ve got a lot to untangle.

Sarah 26:47
Oh, yeah. And often, it’s pretty easy to untangle like, Oh, you did this because, you know, this makes sense and it worked for you at the time. A lot of parents, I think, want to, again, like focus on the behavior and I do a lot of work around, let’s understand what was driving that behavio. It doesn’t necessarily mean it was okay but it worked for a while, which is why they kept doing it and now, we just need to learn healthier and more actually fulfilling ways to cope with the struggles that led you to whatever behavior is the thing that got us looking at more intense intervention.

Brenda 27:25
Yeah, well, it seems like that could be where a diagnosis or whether it’s formal or not, right? Even just identifying you have some of these traits could be helpful so that the young person, like you said, has access to resources, or can even just do their own research to say, Okay, I’m not broken, there’s not something wrong with me, I just have this uniqueness about me and here’s how other people kind of manage that and become really successful at some of these things. Such a fascinating topic. Thank you so much for joining us. I feel like we could have like another three hours of conversation around it. But we’ll make sure and share this so that in your I think you provided some resources as well so that parents can, if you’re listening, and you’re identifying with some of this to just know, I think it’s just so wonderful to know, okay, there are people out there who who have this experience and can help a young person who’s really struggling, and that wilderness is still an option, because I’ve heard that so much, parents who think wilderness is not an option because I have a neurodiverse kid and I don’t know how that would work. It’s amazing to know that there is resource out there. So Sarah, thank you so much for taking the time to join us and have a really, really fascinating conversation.

Sarah 28:54
Yeah, thank you so much for having me. There’s so much more we could say. And yeah, I would just say to parents who this topic has got you curious? Look into it, look behind it, and try to find places where you and your kid can meet in the middle. So a lot of what we ended up working on when we get more into this is the balance of kind of personal ownership and responsibility. This is your life and here are the skills that you can develop to make your life more manageable and adapting the environment which is what we do in wilderness. It’s like a both and adapting the environment to make it a little less hard for you. It can’t be one or the other. It can’t be all just like you need to change and also can’t be the environment being like okay, we’re gonna like cushion everything. So looking for ways to find that balance, looking again, for the intention behind the behavior, I guess would be my takeaway.

Brenda 29:53
Awesome. Love it. Thank you so much.

Sarah 29:58
Thank you. This is great