Monica Garty Juice [00:00:01]: The saddest part for me is that these kids oftentimes have no idea how awesome they are or how hard they're trying. They just know that their parents are at their wit's end with them. They feel like they don't fit in, and everyone else seems to be having an easier time than them, and somehow they pull it off, but they're exhausted.

Penny Williams [00:00:21]: Welcome to Beautifully Complex, where we unpack what it really means to parent neurodivergent kids with dignity and clarity. I'm Penny Williams, and I know firsthand how tough and transformative this journey can be. Let's dive in and discover how to raise regulated, resilient, beautifully complex kids together. Oh, and if you want more support, join our free community at Hub BeautifullyComplex Life.

Penny Williams [00:00:51]: Hi, everyone. Welcome back to Beautifully Complex. I am excited to have with me Monica Gard Juice. And we are going to talk about subtle presentations of neurodivergence, how sometimes we experience misdiagnoses or kids are falling through the cracks, and as parents and educators, what we can do to help to prevent some of that and to be able to help our kids in the best ways that we can. Monica, will you start by letting everybody know who you are and what you do?

Monica Garty Juice [00:01:26]: Yeah, totally. Thanks so much for having me. I'm super excited to be here, especially because conversations like this are just how we change the system. And it's one conversation at a time. This work is really deeply personal for me. I am a pediatric nurse practitioner. I trained at Yale University, did further training, became a pediatric and adolescent mental health consultant specialist, and through the Trauma Research Foundation, I currently am clinical faculty at UCLA School of Nursing. We teach about trauma neurodiversity in their pediatrics and am the owner of Intersection Rising, which I'll tell you about.

Monica Garty Juice [00:02:04]: But more importantly, I am a mom of a really, really fantastic little boy who has no idea how much better I am because of him. And I think, you know, for parents listening to this, we're all listening to be better, right?

Monica Garty Juice [00:02:16]: Yeah.

Monica Garty Juice [00:02:16]: So Intersection Rising is a coaching consulting company that I made, and it was developed by pretty organically, right? I was a new mom working and wrestling with undiagnosed chronic health condition. Specifically, I've had these chronic fevers for, like, six years, and no one can kind of figure it out, but I was waist deep in my own healing journey, working with my therapist, trying to be better, right? But day after day, I kept going to work and I was like, honestly, am I helping anyone? Am I a helpful provider? And are my healthcare providers actually Helping me, honestly, sometimes, sure. But a lot of times, not really. My next question really became, how do I become a provider that actually moves the needle, that changes how individuals experience themselves, how kids grow up, how parents are feeling, and just how they go about the world in a positive way. Our healthcare systems I'll talk more about, but they really weren't created for neurodivergent minds and nervous systems, Right. And so a lot of my patients are swimming upstream, right. And hopefully I can just kind of swim upstream with them and show them away.

Penny Williams [00:03:30]: So I love that.

Monica Garty Juice [00:03:31]: Yeah. So I guess I kind of had this lofty goal that I would be a provider that actually did something right. And I guess if I couldn't do that, the very least people would feel heard or seen and believed by me. And that in itself is such a crucial element in healing.

Monica Garty Juice [00:03:47]: Yes. Yeah.

Penny Williams [00:03:49]: It's so much of what we focus on on the podcast and the work I do. Like, we all just deserve to feel seen, heard, and understood. And when we do, it changes so much. It changes our nervous system, it changes our confidence, it changes the way we show up for others. It's really that crucial piece that I think is so important. And I love that you're really focusing on making sure that you're helping people to kind of show up in a little better way in the world almost, but in the way that works for them, too. At the same time, it's funny, I.

Monica Garty Juice [00:04:25]: Work in a private practice, and in these big hospital systems, after there's visits, right? Patients get called with survey. How was your visit? Did your doctor listen to you? Blah, blah, blah, blah, right? Well, I once had this review that received from a patient's parents saying that I hated doctors, right? I was like, man, because one, that's untrue, right?

Monica Garty Juice [00:04:46]: Yeah.

Monica Garty Juice [00:04:47]: Two, what the heck? And this is what I do for a living, right? And so I want to pause and kind of remind us all that the people providing our health care, they're people too, right?

Monica Garty Juice [00:04:56]: Yeah.

Monica Garty Juice [00:04:57]: The training they had to go through to get there, to get in front of you, it's evidence that they aren't uncaring people, right. Nurses and doctors, they're some of the best humans I know, and they're burnt out, frustrated, wrestling imposter, syndrome, in debt in the same way as everyone else, right?

Monica Garty Juice [00:05:13]: Yeah.

Monica Garty Juice [00:05:14]: These systems were designed for efficiency. More importantly, they were designed by people who aren't healthcare providers themselves, right? So our health system is really functioning as it was designed to do, Right. And two things can be true at the same time. There can be parts of healthcare in, you know, medical providers that are truly remarkable, and yet it can still be incomplete, flawed, and in need of serious renovating. You know, I think this is especially true when it comes down to talking about, like, marginalized populations in these subtle presentations that we're talking about today.

Monica Garty Juice [00:05:51]: Yeah.

Penny Williams [00:05:52]: And no one necessarily knows until they know, Right. If you have a doctor, they don't necessarily have any training on neurodivergence. They don't necessarily know or have experience in that. It doesn't make them less of a physician. It just means that they are not knowledgeable in that area yet. Right. So we have to give people grace in that way, or we at least have to have that understanding that someone just may not know yet.

Monica Garty Juice [00:06:29]: And that's kind of what my life goal is. Right. Like, I'm not here to fix people, tell them that they're doing it wrong. But these systems, like, we join them and they expect us to contort ourselves in ways that harm us until we break, and then it pathologizes us.

Monica Garty Juice [00:06:44]: Right.

Monica Garty Juice [00:06:45]: And I think our healthcare system, especially when we're talking about neurodiversity and all the overlap that comes with it, you know, Ehlers, Danlos syndrome, pots, dysautonomia, chronic fatigue, Covid, long haul, all these things, like, we're starting to see our system break, Right. And we can't just sweep that under the rug.

Monica Garty Juice [00:07:06]: Right.

Monica Garty Juice [00:07:06]: So this is kind of where we need systems. Podcast like this. And, you know, people in academia, people that are willing to swim upstream and say, hey, like, can we think about, is there a better way? Are we really serving our patients? And for the record, I'm just figuring it out too.

Monica Garty Juice [00:07:24]: Right?

Monica Garty Juice [00:07:25]: And I'm super, super grateful for the good reviews, the bad reviews, my colleagues and patients who entertain my info dumps, and the people who are also interested in this and trying to make a difference so it feels less alone.

Monica Garty Juice [00:07:41]: Yeah.

Penny Williams [00:07:42]: Such a growth model, right? Growth mindset. We're all doing what we know how to do, but we're learning and we're striving to do better. And we continue to learn and to pivot and shift and make sometimes different decisions and different choices and different perspectives and modeling that, I think is so important, too, for the population that you and I serve. People who are neurodivergent, kids who are neurodivergent, like, they need that flexibility as much as we do.

Monica Garty Juice [00:08:15]: It's a scientific method, Right. Like, you try something, it doesn't work, is not a failure.

Monica Garty Juice [00:08:20]: Right?

Monica Garty Juice [00:08:20]: Yeah.

Monica Garty Juice [00:08:20]: I read a Quote, recently, it was like, if you knew you had to fail 30 times to become successful, how fast would you try to fail?

Monica Garty Juice [00:08:28]: Yeah.

Monica Garty Juice [00:08:29]: So Intersection Rising is. It's really my baby.

Monica Garty Juice [00:08:32]: Right.

Monica Garty Juice [00:08:33]: But it's kind of where all things meet. So my clinical experience, academic interests, and obviously my personal lived experiences, this connection between mental health and medical health and those studies out of internal medicine that show that 95% of referrals to psych never make it.

Penny Williams [00:08:50]: Not surprised.

Monica Garty Juice [00:08:51]: There's access, there's executive functioning. These people are depressed and we're telling them to call the number on the back of their card. There needs to be a bridge here, more of a connection between clinician and patient.

Monica Garty Juice [00:09:02]: Right.

Monica Garty Juice [00:09:03]: Parent and child schools. Like, life doesn't happen in silos.

Monica Garty Juice [00:09:07]: Right.

Monica Garty Juice [00:09:08]: And the way medicine is set up is really in these little boxes. Go see Neuro, go see Psych. But we really need a quarterback. Someone that's looking at the big picture and seeing, okay, what's the lower hanging fruit? What are we going to target now? What are we going to kick down the road?

Penny Williams [00:09:25]: That's often the parent. You know, as a parent of a neurodivergent kid myself, that was the role I had to take. I had to figure out how to weave all these things together. I had to figure out what was missing. I had to be the frontal lobe and make all the appointments and juggle all the things. And yeah, in the absence of that being offered to us, we end up stepping up as a parent.

Monica Garty Juice [00:09:48]: And so many times, I think even with, like, the knowledge.

Monica Garty Juice [00:09:54]: Right.

Monica Garty Juice [00:09:55]: Like, I mean, think about how difficult it is as you working in this and knowing all these people, like, how hard it is to advocate for children.

Monica Garty Juice [00:10:02]: Yeah.

Monica Garty Juice [00:10:03]: Imagine not speaking the language. Imagine not having access to healthcare. Imagine not having a car.

Monica Garty Juice [00:10:09]: Right?

Monica Garty Juice [00:10:10]: Yep.

Monica Garty Juice [00:10:11]: Imagine barely trying to put food on the tables. Like, nobody has time to sit on hold for five hours, let alone go to OT five times a week and do all these, like, run the IEPs. All of it.

Monica Garty Juice [00:10:23]: Yeah.

Monica Garty Juice [00:10:23]: Right.

Monica Garty Juice [00:10:24]: And so that's a lot to put on parents. And I'm so grateful for the parents that are there and are able to do it. But when we sign up to be pediatric nurse practitioners or pediatricians, we're signing up not just to take care of the child, but to take care of the child's family.

Penny Williams [00:10:41]: So needed. That perspective is so needed. And I think we see it more in pediatrics than we do in general medicine, at least in my experience. But there's still a lot of disconnect between specialties and, oh, I'M going to refer you over here. And now they're taking over. Now I've handed you off, but I haven't even really handed you off. You have to do the work to now get there, to make the appointment, to connect, to do all those things. And you're right.

Penny Williams [00:11:11]: There's so many people who don't have access. And I think mental health care access is woefully underfunded. It's not covered with insurance a lot or it's not covered enough. You know, my own family, I'm self employed so I have to get my own healthcare insurance. I've done that for 20 years or more at this point. And every year we have to weigh the cost of the premium with like how much it covers, the cost of what we have to do. And we value therapy in this family. And therapy, you know, just this last year I couldn't afford the premium anymore because it was insane.

Penny Williams [00:11:55]: Way more than my mortgage, way more than my mortgage. And so I had to switch to something less where mental health care now costs a lot more every time we go. And so you kind of pay for it one way or the other. Right. And if you don't have insurance, my gosh, there are very few people who can afford health care without insurance at all. It's just, you know, as you said at the beginning, the system is broken. And what can we do as individuals to make that function better, at least for our families? Like, we also have to think about protecting our energy. Right.

Penny Williams [00:12:33]: If you're the parent like I was, who was managing all of this and trying to weave all of this together and create this team for my kid. I don't also have the energy to try to change anybody else's mind at the same time or change the system.

Monica Garty Juice [00:12:49]: It's really, it's a full time job. And you know, one thing is a little bit of a tangent, but one of the things that I see in practice too, that always gets me is like they work with such like observant kids, right? Kids that already feel like a burden, that are already like, right. So then we talk about the money aspect of how much their therapy is going to cost. What is it going to do? And if I was a kid, it'd make me be like, I'm fine, I'm asking.

Penny Williams [00:13:18]: Yeah, they're trying to protect the parent.

Monica Garty Juice [00:13:20]: They already don't want to be a burden. They're already feeling bad about everything.

Monica Garty Juice [00:13:25]: Right?

Monica Garty Juice [00:13:26]: So then our system kind of creates this identified patient and you know, you see where that goes. So intersection Rising is just really the intersection of everything. It's a place where we can slow down, look at the whole picture and really see what's in front of us.

Monica Garty Juice [00:13:42]: Right.

Monica Garty Juice [00:13:43]: It's really cool because when we see beyond the externalized behaviors, beyond the diagnoses.

Monica Garty Juice [00:13:48]: Right.

Monica Garty Juice [00:13:48]: There's these unspoken patterns and these beautiful adaptations that are just like so brilliant that these little kids developed on their own and they're just hidden beneath the surface.

Monica Garty Juice [00:13:58]: Yeah.

Monica Garty Juice [00:13:59]: Sometimes these are their greatest strengths.

Monica Garty Juice [00:14:02]: Yeah.

Penny Williams [00:14:03]: Let's talk a little bit about the subtlety of complex kids. Sometimes on your website you say complex kids are often invisible in plain sight. I resonated so much with that when I read it. My own kid had a diagnosis of ADHD at age 6, barely 6. And then around age 10, I was like, there's something else going on here. This isn't explaining all of it. There's definitely something else going on here. And we started down the path of considering autism and the first two clinicians both said, no, ADHD fits better.

Penny Williams [00:14:39]: You know, he's looking me in the eye and he's having this two way conversation. And it was so difficult, but I just knew in my gut that I was on the right path. And I finally connected with a clinician who specialized in the sort of, I can't do this without air quotes. High functioning autism. Right. That level one, that really subtle presentation. And in her report she actually wrote, he is the clinical definition of hiding in plain sight with his autism diagnosis. And just gave me goosebumps.

Penny Williams [00:15:16]: That was years ago. He's 22 now. But it took so much effort and so much time on my part to find anybody who would. Even people in. This was a mental health pediatric practice who were telling me, and this was somebody, after he got the diagnosis, he was like, I don't agree with that diagnosis. Your kid just had a conversation with me. It was reciprocal. He's looking me in the eye.

Penny Williams [00:15:40]: I'm like, he learned how to do these things right. Like, and not every kid on the spectrum has those specific traits. But how do we as parents help to navigate that sort of thing when our kids are hiding in plain sight, when they are falling through the cracks? How do we advocate with the system, with the pediatrician or the GP or whoever we are trying to get some help from?

Monica Garty Juice [00:16:09]: Yeah. You know, it always makes you laugh when people say, like, well, they don't look autistic. I'm saying, like, what does an autistic person look like?

Monica Garty Juice [00:16:16]: Yeah, right.

Monica Garty Juice [00:16:18]: And I always talk about the diagnostic, you know, DSM and You know the flaws about it.

Monica Garty Juice [00:16:24]: Right.

Monica Garty Juice [00:16:24]: And number one, a lot of the diagnosis was created off boys. Secondly, it's external symptoms. Those things that you can see.

Monica Garty Juice [00:16:31]: Yeah.

Monica Garty Juice [00:16:32]: For ADHD is going to be inattention, fidgetiness, so forth.

Monica Garty Juice [00:16:36]: Right.

Monica Garty Juice [00:16:36]: But that's not necessarily what ADHD is. It's actually a hyper focus. Issues with executive functioning.

Monica Garty Juice [00:16:42]: Yep.

Monica Garty Juice [00:16:42]: You know, autism, lack of empathy.

Monica Garty Juice [00:16:45]: Right.

Monica Garty Juice [00:16:46]: Where they don't have social skills, it's actually the opposite where they have hyper empathy. They just don't know what the heck to do.

Monica Garty Juice [00:16:52]: Yes.

Monica Garty Juice [00:16:52]: And there's this double empathy problem.

Monica Garty Juice [00:16:54]: Yep.

Monica Garty Juice [00:16:54]: Right.

Monica Garty Juice [00:16:54]: Yep.

Monica Garty Juice [00:16:55]: You know, lack of emotions versus like alexithymia and problems with interoception.

Monica Garty Juice [00:17:01]: Right.

Monica Garty Juice [00:17:01]: So all of these things, if they're invisible, you're not going to see them.

Monica Garty Juice [00:17:04]: Right.

Monica Garty Juice [00:17:05]: In this diagnostic, this ADOS test is like, you know, autism diagnostic. It's the gold standard, right?

Monica Garty Juice [00:17:11]: Yep.

Penny Williams [00:17:11]: The gold standard said no to me.

Monica Garty Juice [00:17:14]: But the gold standard is only looking at externalized symptoms. And you know, if these kids are high maskers, then they're not going to catch it.

Monica Garty Juice [00:17:23]: Yeah.

Monica Garty Juice [00:17:24]: There's a lot of subtleties. So, yeah. A lot of the kids that we work with, they're these incredibly bright, sensitive, observant kids. They've learned to read the room, they mask, they blend in, they people please. They say the right things and on paper they're fine and doing great. Parents come in the office with the kids and they're like, we're having trouble with them and how are they doing at school? They're great at school. How are they in soccer? They're great at soccer. Do they have friends? They have a small group of friends.

Monica Garty Juice [00:17:54]: Right.

Monica Garty Juice [00:17:54]: All of these things. But they're melting down.

Monica Garty Juice [00:17:58]: Right.

Monica Garty Juice [00:17:59]: And then the years go on and it's like, you know, yeah, they are a pleasure to have in class, but they're quiet. Or maybe they're a little anxious, they're super hard on themselves or they're very serious. Sometimes they're like a little quirky.

Monica Garty Juice [00:18:12]: Right.

Monica Garty Juice [00:18:13]: And at home, parents are seeing the complete opposite. They're seeing these huge meltdowns, these full stop shutdowns.

Monica Garty Juice [00:18:20]: Right.

Monica Garty Juice [00:18:21]: Like constant exhaustion, endless physical complaints and ailments, belly aches, headaches.

Monica Garty Juice [00:18:26]: Right.

Monica Garty Juice [00:18:27]: Mood swings, fighting with their siblings. And there's this dissonance of like, how does this not match?

Monica Garty Juice [00:18:33]: Right.

Monica Garty Juice [00:18:35]: And it's confusing. They look like they're coping from the outside, but on the inside they're really, really struggling and they're working twice as hard in a world that wasn't created for them. So, yeah. I think the saddest part for me is that these kids oftentimes have no idea how awesome they are or how hard they're trying. They just know that their parents are at their wit's end with them. They feel like they don't fit in and everyone else seems to be having an easier time than them. Somehow they pull it off, but they're exhausted. So, you know, these kids are especially these subtle ones.

Monica Garty Juice [00:19:11]: Right.

Monica Garty Juice [00:19:12]: Like the ones like your boy, the ones that aren't picked up by the ados.

Monica Garty Juice [00:19:14]: Right.

Monica Garty Juice [00:19:15]: These kids become total black belts.

Monica Garty Juice [00:19:18]: Right.

Monica Garty Juice [00:19:18]: At camouflaging. Experts at it. And it's one heck of a skill to have in our pocket.

Penny Williams [00:19:24]: Right.

Monica Garty Juice [00:19:24]: And to a degree, all of us do a degree of masking and we go to the bank and we say, hi, how are you? We go to the Christian fee.

Monica Garty Juice [00:19:30]: Right.

Monica Garty Juice [00:19:30]: But it's like it's not all the time. And we're not masking at home in our bedrooms.

Monica Garty Juice [00:19:36]: Right.

Monica Garty Juice [00:19:37]: And I think sometimes masking is so pervasive that a lot of these kids don't even know who they are.

Monica Garty Juice [00:19:42]: Yeah.

Monica Garty Juice [00:19:43]: So when we talk about kids invisible in plain sight, this is what I'm talking about.

Monica Garty Juice [00:19:46]: Right.

Monica Garty Juice [00:19:47]: They're working overtime to survive in systems that weren't designed for them. It's really like being left handed in a right handed world.

Monica Garty Juice [00:19:55]: Yeah.

Monica Garty Juice [00:19:56]: Okay. You can be left handed, but you're going to live in a right handed world. Right handed scissors, right handed desks. No. Golf clubs.

Monica Garty Juice [00:20:02]: Right.

Monica Garty Juice [00:20:03]: Yeah.

Monica Garty Juice [00:20:03]: Figure it out. But there's nothing inherently wrong with being left handed.

Monica Garty Juice [00:20:07]: Yeah. Yeah.

Penny Williams [00:20:09]: It's just one way to be.

Monica Garty Juice [00:20:10]: Yep.

Penny Williams [00:20:11]: I talked with an ADHD coach, Jeff Copper, who I've talked with many times before. He's been on the podcast as well. He hosts Attention Talk Radio. He's been doing it for years and years and he has people, parents or loved ones of adults do an exercise where they have to make a meal with their non dominant hand so that they can feel what it feels like to be that left handed person in the right handed world. Right. To be the one who the world wasn't built for. That sticks with me all the time. I think just thinking about trying to do it with my left hand makes me want to like run into a corner and crawl underneath something and hide.

Penny Williams [00:20:55]: Like, it would be a disaster. I love that analogy. I think it's really powerful for parents and educators.

Monica Garty Juice [00:21:02]: And how many people would be like, monica, stop spilling everything. Why is it that hard?

Penny Williams [00:21:07]: It's not so hard. I can do it. See? Or you did it the other day, why can't you do it today?

Monica Garty Juice [00:21:13]: Right?

Penny Williams [00:21:19]: If you've been listening for a while, you're familiar with my Back to School.

Penny Williams [00:21:22]: Prep week, where I set neurodivergent kids.

Penny Williams [00:21:25]: And their families up for success, right?

Penny Williams [00:21:28]: When the school year starts.

Penny Williams [00:21:29]: There's another podcast that will help you navigate the rest of the school year. It's called Opportunity Gap, and it's all about special education.

Penny Williams [00:21:39]: Let's be real. All Those acronyms alone, IEP504FBA, BIP can be overwhelming.

Penny Williams [00:21:47]: All you want is for your kid to have the opportunity for success, right? You'll hear from special educators, child psychologists, and other learning experts who know their stuff and give you realistic advocacy tools. I listened to Opportunity Gap, and I was blown away. Julian Saavedra and his guests break it down in simple terms, highlight where to focus your energy, and give you simple steps to advocate efficiently.

Penny Williams [00:22:18]: So if you've ever walked out of.

Penny Williams [00:22:19]: A school meeting wondering what just happened.

Penny Williams [00:22:23]: Go search for Opportunity Gap in your podcast app. That's Opportunity Gap. Can we talk a little bit about misdiagnosis? Because I think that's really common for neurodivergent people in general. Like, it happens to adults, too. How do we navigate that as parents? Like, I talk a lot about really following your gut. If you really believe, like I did with autism with my kid, I kept going until I trusted the outcome. And when I found this person who this was her specialty, I had said at the beginning, whatever her outcome is, that's what it is, and that will be the end of this for me if it's the end. Right? Because I knew that she was going to dig as deep as she could dig.

Penny Williams [00:23:21]: And she actually said in our first meeting, my son was there, she was talking to him a little bit, and she said, I'm going to be honest, I don't see it, but I'm going to do all the evaluations, I'm going to have all the conversations with him. And in the end, there he was, hiding in plain sight, right? And so I was compelled to advocate for that to keep going. And people in the family were like, no, we don't see it. Like, everybody was like, we don't see it except me. And I had to be able to do that. I had to be able to stand up and say, I don't believe this is true yet. I'm still searching for an answer I haven't gotten yet. And how do we do that when maybe we did get a diagnosis, but it doesn't feel right.

Monica Garty Juice [00:24:09]: Right.

Penny Williams [00:24:10]: If it's the wrong diagnosis, or how can we even spot that it's the wrong diagnosis, if maybe we do just take it at face value.

Monica Garty Juice [00:24:20]: It's funny because I work with a psychologist who sounds much like yours, where I like, it's like, I know that when people see her, people, they're never gonna have to reinvent the story. This is it.

Monica Garty Juice [00:24:30]: Right?

Monica Garty Juice [00:24:30]: Like, yeah, but it's so hard because when people have had testing, they've had years of therapy, they've had all these things and nothing is really working. And I'm like, hey, I want you to go get testing. Like, I can't pay for this. We just had it with this person. And I'm like, I know you did.

Monica Garty Juice [00:24:47]: Right.

Monica Garty Juice [00:24:48]: But when people come into my office in primary care, how do you even get us to refer? Right. And if we refer to neurology or psych, how do we know that it's gonna be taught?

Monica Garty Juice [00:25:01]: Right.

Monica Garty Juice [00:25:01]: Yeah.

Penny Williams [00:25:01]: The outcome you want.

Monica Garty Juice [00:25:03]: And so I always tell parents, get on Google, read everything, get on Facebook groups, connect, educate yourself, listen to podcasts like this. It's really interesting when you think about diagnostic codes.

Monica Garty Juice [00:25:14]: Right.

Monica Garty Juice [00:25:15]: Like, I honestly think most clinicians will know when something feels off. But if we don't have a category diagnosis, these limited categories to put it in, where do you put it? And there are diagnostic codes for being bitten by an orca walking into a lamppost. I'm not kidding. W22 02 is walking into a lamppost.

Penny Williams [00:25:36]: That's bonkers.

Monica Garty Juice [00:25:37]: V91,07 is burned due to water skis being on fire. But there is no diagnostic code for twice exceptionality.

Monica Garty Juice [00:25:44]: Yep.

Monica Garty Juice [00:25:45]: So sometimes labels fit, sometimes they don't. Sometimes what we're actually seeing is a nervous system that's stuck in survival mode. 100% labeling a depression or sensory processing differences, convergence insufficiencies with their eyes trauma and things like chronic misattunement, medical trauma, family systems who are enmeshed and codependent. These aren't going to show up on these intake forms, these questionnaires. Neither will auditory processing. So, yeah, they're not going to get diagnosed. And sometimes it's a kid who's just deeply gifted, intuitive and sweet.

Monica Garty Juice [00:26:25]: Right.

Monica Garty Juice [00:26:25]: So we miss it. And you know, the downfalls is that when we have limited recognition and understanding, we therefore have limited access to support and services.

Monica Garty Juice [00:26:36]: Right.

Monica Garty Juice [00:26:37]: And then opportunities to expand research, improved care systems.

Monica Garty Juice [00:26:41]: Yeah.

Monica Garty Juice [00:26:41]: So it makes sense why these subtle kids are just kind of like the forgotten ones. And again, it's not a failure on the provider I think as more information comes out and as we're like, it's going to become the failure of the provider.

Monica Garty Juice [00:26:55]: Right.

Monica Garty Juice [00:26:56]: Like, people, they got to learn. And this is my life's work, is helping people see it so clearly that they can see it.

Monica Garty Juice [00:27:02]: Right.

Monica Garty Juice [00:27:03]: There's no reason why that we shouldn't be asking, when a kid comes in, what happened here? What's the context? What does their behavior protect for them? What is this behavior communicating? Did they walk into a lamppost and that's why they hurt? Did their water skis catch on fire? That's why they were burned? Or did something happen? And is that what preceded their selective mutism?

Penny Williams [00:27:27]: We always have to dig deeper because it is sort of this invisible thing. Mental health is sort of invisible. And when we're not asking questions, we're not getting to the root. How do you change anything if you don't change why it happens?

Monica Garty Juice [00:27:40]: That's the issue with these external symptoms.

Monica Garty Juice [00:27:42]: Right.

Monica Garty Juice [00:27:44]: And oftentimes too, I think about, like, even anxiety. Like, it makes sense when people are depressed, maybe they have damn good reasons to be depressed and it's not a pathology.

Penny Williams [00:27:53]: Right, right.

Monica Garty Juice [00:27:55]: Bor Mate talks about substance abuse and he says, you know, like, why is it that when we send people to rehab, oftentimes people detox, they'll get off drugs, discharged, and go back into the world. And oftentimes they'll relapse. And they say, why you're doing so great? Well, you didn't treat the pain. You have to treat the pain.

Monica Garty Juice [00:28:11]: Right.

Monica Garty Juice [00:28:12]: This is how I kind of see these neurodivergent kids and families is like ABA stuff. Like we're just putting band aids on things. Like, you have to get to the root.

Monica Garty Juice [00:28:20]: Yeah.

Monica Garty Juice [00:28:20]: And humans have two needs. Number one, attachment, belonging. Number two, authenticity. Being who you are. Attachment will always trump authenticity. But no one should ever have to sacrifice one for the other. And this is what we ask neurodivergent kids to do.

Monica Garty Juice [00:28:37]: Yes.

Monica Garty Juice [00:28:38]: And when they mask, we say, you are doing so great. You're such a pleasure to have around.

Monica Garty Juice [00:28:44]: Yeah.

Monica Garty Juice [00:28:45]: Maybe autism and maybe these external symptoms are just stress symptoms 100% and in the right habitat, they don't exist.

Penny Williams [00:28:54]: Exactly. Yeah, exactly. When we create neuroaffirming environments, being neurodivergent doesn't stand out so much. It isn't seen as a problem. It isn't seen as something that needs to be changed or fixed.

Monica Garty Juice [00:29:11]: Yeah.

Penny Williams [00:29:11]: We have definitely a fix it mentality. And part of that just comes from deep caring. We want things to be better, easier for our kids, right? We don't want to see them struggle. But if we stay in denial with that, we can't help them. If we stay focused on fixing. We're not helping them, we're just trying to make them fit. That's all trying to fix does. It's just trying to make them fit in that system, that right handed world.

Penny Williams [00:29:40]: We're trying to push them into it again. We have to look at the whole picture. And a lot of times when I talk to parents and maybe kids resistant to diagnosis, maybe a parent's resistant to diagnosis, then we can step back and we can say, okay, the label doesn't matter so much. It's important to access services, to get insurance to cover things, that kind of thing, right? It can help for advocating at school. But the bottom line is that there's this list of strengths and weaknesses for this individual person and we need to help them navigate those given the world that they have, the environment that we create for them. Right? And yes, we want to change a lot of these systems. We want to change education so that they're not othered when they go to school. We want to change the mental health coverage and the medical field and all these systems that are so rigid.

Penny Williams [00:30:39]: But the bottom line is if my kid's going to school every day and he can't remember to turn in his homework, it doesn't matter what diagnosis that's attributed to right at that moment. We can work on how do we help with this specific thing. And I think when you take that mindset, you can sort of add that to the diagnosis when it's the right diagnosis, but it's not covering all the things as you're talking about. I get people all the time who ask me like how do I get dysgraphia diagnosed? Well, it's not really in the DSM, but you might find an OT, lots of OTs. We'll talk about dysgraphia. I mean that's what we did. That's how we got a piece of paper that was formal that mentioned dysgraphia on it. The DSM really needs an update.

Penny Williams [00:31:28]: It is way past time. The last update was when we were seeking that additional autism diagnosis and it was new that you could even diagnose both. Which is another whole conversation to have about the fact that sometimes you're restricted from putting two things together. It's just crazy. There's so many more things that we could talk about. We've already reached our 30 minute mark where parents can often find the time to Squeeze it in. Or sometimes find the time. So I want to wrap up now, and we'll have you back and we'll talk some more about some of this stuff because there's so much more to talk about.

Penny Williams [00:32:09]: But will you let everybody know before we go, what is one step they could take right now? If I, you know, myself 20 years ago was when I'm suspecting something, people aren't listening, maybe. Or I'm unsure of myself as the parent and what I'm thinking, what is the one first next step that I could take to start moving in a direction of getting answers or growth or helping my kid?

Monica Garty Juice [00:32:42]: Yeah. I mean, I think slow down.

Penny Williams [00:32:45]: Yes.

Monica Garty Juice [00:32:46]: And, you know, we kind of catastrophe and we get all these. And I think this is the fix it mentality.

Monica Garty Juice [00:32:51]: Right.

Monica Garty Juice [00:32:51]: Is it's so uncomfortable that we want to make these problems go away because it's uncomfortable in our bodies. Uncomfortable to know our kids are feeling this way. Vice versa.

Monica Garty Juice [00:32:59]: Right.

Monica Garty Juice [00:33:00]: But we can just start observing without judgment, like, get curious, notice, like, what are the things that cause them to be dysregulated?

Monica Garty Juice [00:33:10]: Yeah.

Monica Garty Juice [00:33:10]: What are the things that seem to calm them down?

Monica Garty Juice [00:33:13]: Right.

Monica Garty Juice [00:33:13]: What's happening around those moments? What are the sensory environments like?

Monica Garty Juice [00:33:18]: Right.

Monica Garty Juice [00:33:18]: What are the demands and experiences they're facing? We always think about, you know, my son was learning about, like, different habitats in school, and it occurred to me that, like, well, if there was an arctic fox, it would not thrive in a desert habitat.

Penny Williams [00:33:32]: That feels obvious.

Monica Garty Juice [00:33:33]: Yeah.

Monica Garty Juice [00:33:35]: And is that not what's happening to our neurodivergent kids when we sent them in these school systems? And maybe for parents, we're just figuring out, hey, what kind of habitat do our kids thrive in? Maybe we ask them and we go from there. Right. And I always believe in high expectations with reasonable accommodations. But parents, slow down. Trust your gut, you know, your kid.

Penny Williams [00:34:00]: I love that.

Monica Garty Juice [00:34:01]: Yeah.

Penny Williams [00:34:02]: That slowed down is everything.

Monica Garty Juice [00:34:04]: Find other parents, find other people. There's groups on Facebook that are like autistic adults that parents can ask questions to, and they get answers within 24 hours and, like, all sorts of communities. So podcasts like this.

Monica Garty Juice [00:34:17]: Yeah.

Penny Williams [00:34:17]: There's a lot of information out there now. There's a lot that you can consume, but just with slowing down, just as that goes, like, don't try to do it all at once. That's a big one for me. And when I hear you say slow down, it reminds me of that. Like, we have to take our time to get this right. And as much as we want to change everything at one time, it's just not possible. And when we dilute our efforts into multiple buckets now, nothing is getting the focus and the energy that it deserves, and that's required to really move the needle. So I love that that was your first advice for people, is to slow down.

Penny Williams [00:34:56]: Like, plus, you just miss the good stuff. When you're so focused on everything, that's hard. There's no room for joy. You have locked it out. You have to make room for that. You, you have to notice it. So slowing down. I love that advice.

Monica Garty Juice [00:35:10]: Talking about all these parenting strategies, one of the most common ones I say is blow up an air mattress in the living room and you will see your kid come to life. Right, like play, eat on the floor, these sorts of things, like get in their level and be attuned. And that's what's healing.

Penny Williams [00:35:27]: Love that. Let everybody know where they can find JIO online so they can connect and maybe learn more from you.

Monica Garty Juice [00:35:33]: Yeah. Intersectionrising.com and I do have a small Instagram, but I don't really use it, so probably not that useful. But if you send a message today, I will see it and I can get back to you. But intersectionalrising.com and you'll find my contact information there.

Penny Williams [00:35:49]: Awesome. And we'll link it up in the show notes for everyone, so it's really easy to find. And those show notes are at parentingadhd and autism.com327 for episode 327. Thank you so much, Monica, for this perspective, this reminder, this permission that we can trust our gut as a parent, that we may see things that other people don't see, and that it is totally within our right to advocate to keep going, to make sure that diagnoses are correct, to make sure that our kids are being seen, heard, and understood in the environments that they're in. It's really, really important work, and I'm so thankful that we got to connect and share this with everybody listening.

Monica Garty Juice [00:36:39]: Thank you.

Penny Williams [00:36:40]: I'll see everybody next time. Take good care. I see you.

Penny Williams [00:36:46]: You're doing hard and meaningful work and you don't have to do it alone. If you found this episode helpful, share it with someone who needs it and leave a quick review so others can find this support, too. When you're ready for next steps, the Regulated Kids Project is here with the tools, coaching and community to help you raise a more regulated, resilient child. Get more [email protected].