Latest / Beautifully Complex / 326: Hidden in Plain Sight: Misdiagnosis & Missed Diagnosis with Monica Garty Juice, PNP, PMHS

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326: Hidden in Plain Sight: Misdiagnosis & Missed Diagnosis with Monica Garty Juice, PNP, PMHS · Beautifully Complex

0:01
Speaker 1: The saddest part for me is that these kids oftentimes
0:03
Speaker 1: have no idea how awesome they are, how hard they're trying.
0:07
Speaker 1: They just know that their parents are at their wits
0:10
Speaker 1: end with them. They feel like they don't fit in
0:13
Speaker 1: and everyone else seems to be having an easier time
0:16
Speaker 1: than them, and somehow they pull it off, but they're exhausted.
0:21
Speaker 2: Welcome to Beautifully Complex, where we unpack what it really
0:25
Speaker 2: means to parent neurodivergent kids with dignity and clarity. I'm
0:29
Speaker 2: Penny Williams, and I know firsthand how tough and transformative
0:33
Speaker 2: this journey can be. Let's dive in and discover how
0:37
Speaker 2: to raise regulated, resilient, beautifully complex kids together. Oh and
0:42
Speaker 2: if you want more support, join our free community at
0:46
Speaker 2: hub dot beautifully complex dot life. Hi everyone, welcome back
0:53
Speaker 2: to your beautifully complex. I am excited to have with
0:58
Speaker 2: me Monica Gardi Jews, and we are going to talk
1:01
Speaker 2: about subtle presentations of neurodivergence, how sometimes we experience misdiagnoses
1:09
Speaker 2: or kids are falling through the cracks, and as parents
1:13
Speaker 2: and educators, what we can do to help to prevent
1:16
Speaker 2: some of that and to be able to help our
1:19
Speaker 2: kids in the best ways that we can. Monica, will
1:21
Speaker 2: you start by letting everybody know who you are and
1:24
Speaker 2: what you do?
1:26
Speaker 1: Yeah, totally, Thanks so much for having me. I'm super
1:29
Speaker 1: excited to be here, especially because conversations like this are
1:33
Speaker 1: just how we change the system, right, and it's one
1:35
Speaker 1: conversation at a time. This work is really deeply personal
1:39
Speaker 1: for me. I am a pediatric nurse practitioner. I trained
1:43
Speaker 1: at Yale University, further training, became a pediatric and adolescent
1:47
Speaker 1: mental health consultant specialist, and through the Trauma Research Foundation,
1:52
Speaker 1: I currently am clinical faculty at UCLA School of Nursing
1:56
Speaker 1: teach about Trauma, neudiversity and their pediatrics in the owner
2:01
Speaker 1: of Intersection Rising, which I'll tell you about. But more importantly,
2:05
Speaker 1: I am a mom of a really, really fantastic little
2:07
Speaker 1: boy who has no idea how much better I am
2:10
Speaker 1: because of him. And I think, you know, for parents
2:12
Speaker 1: listening to this, we're all listening to be better, right.
2:16
Speaker 2: Yeah.
2:16
Speaker 1: So, Intersection Rising is a coaching consulting company that I made,
2:20
Speaker 1: and it was developed pretty organically. Right. I was a
2:23
Speaker 1: new mom working and wrestling with undiagnosed chronic health condition. Specifically,
2:29
Speaker 1: I've had these chronic fevers for like six years, and
2:32
Speaker 1: no one can kind of figure it out. But I
2:35
Speaker 1: was way steep in my own healing journey, working with
2:38
Speaker 1: my therapist, trying to be better. Right, But day after
2:41
Speaker 1: day I kept going to work and I was like, honestly,
2:44
Speaker 1: am I helping anyone? Am I healthful provider? And are
2:48
Speaker 1: my healthcare providers actually helping me? And honestly, sometimes sure,
2:54
Speaker 1: but a lot of times not really right. So my
2:59
Speaker 1: next question really became was how do I become a
3:02
Speaker 1: provider that actually moves the needle that changes how individuals
3:07
Speaker 1: experience themselves, how kids grow up, how parents are feeling,
3:11
Speaker 1: and just how they go about the world in a
3:12
Speaker 1: positive way. And you know, our healthcare systems will talk
3:16
Speaker 1: more about but they really weren't created for nerdivergent minds
3:20
Speaker 1: in nervous systems, right, And so a lot of my
3:23
Speaker 1: patients are swimming upstream, right, and hopefully I can just
3:27
Speaker 1: kind of swim upstream with them and show them away.
3:31
Speaker 2: Yeah.
3:31
Speaker 1: So I guess I kind of had this lofty goal
3:33
Speaker 1: that I would be a provider that actually did something right.
3:37
Speaker 1: And I guess if I couldn't do that at the
3:40
Speaker 1: very least people would feel heard or seen and believed
3:43
Speaker 1: by me, and that in itself is such a crucial
3:46
Speaker 1: element and healing.
3:47
Speaker 2: Yes, yeah, it's so much of what we focus on
3:51
Speaker 2: the podcast and the work idea, like we all just
3:54
Speaker 2: deserve to feel seen, heard and understood, and when we do,
3:57
Speaker 2: it changes so much. It changes our nervous it changes
4:01
Speaker 2: our confidence, it changes the way we show up for others.
4:04
Speaker 2: It's it's really that crucial piece that I think is
4:08
Speaker 2: so important. And I love that you're really focusing on
4:12
Speaker 2: making sure that you're helping people to kind of show
4:18
Speaker 2: up in a little better way in the world almost
4:21
Speaker 2: but in the way that works for them too. At
4:23
Speaker 2: the same time, it's funny.
4:25
Speaker 1: I work in a private practice and in these big
4:27
Speaker 1: hospital systems, after those visits, right, patients get called with
4:31
Speaker 1: survey how was your visit? Did your doctor listen to
4:33
Speaker 1: did blah blah blah blah? Right? Well, I once had
4:35
Speaker 1: this review they received from a patient's parent saying that
4:38
Speaker 1: I hated doctors. Right. I was like, man, because one,
4:44
Speaker 1: that's untrue, right yeah, Two what the heck? And this
4:48
Speaker 1: is what I do for a living, right, And so
4:51
Speaker 1: I want to pause and kind of remind us all
4:53
Speaker 1: that the people providing our healthcare they are people too, right, Yeah,
4:57
Speaker 1: the training they had to go through to get there,
4:59
Speaker 1: to get a in front of you, it's evidence that
5:01
Speaker 1: they aren't uncarrying people. Right, Nurses and doctors, they're some
5:05
Speaker 1: of the best humans I know, and they're burnt out, frustrated,
5:09
Speaker 1: wrestling poster syndrome and debt in the same way as
5:12
Speaker 1: everyone else. Right, These systems were designed for efficiency, more portly,
5:19
Speaker 1: they were designed by people who aren't healthcare providers themselves.
5:23
Speaker 1: So our health system is really functioning as it was
5:26
Speaker 1: designed to do. Right, And two things can be true
5:30
Speaker 1: at the same time. There can be parts of healthcare
5:33
Speaker 1: and you know, medical providers that are truly remarkable, and
5:37
Speaker 1: yet it can still be incomplete, flawed and in need
5:40
Speaker 1: of serious renovating. You know. I think this is especially
5:43
Speaker 1: true when it comes down with talking about like martialized
5:45
Speaker 1: populations in these subtle presentations that we're talking about today.
5:51
Speaker 2: Yeah, and no one necessarily knows until they know. Right,
6:00
Speaker 2: if you have a doctor, they don't necessarily have any
6:04
Speaker 2: training on neurodivergence. They don't necessarily know or have experience
6:10
Speaker 2: in that. It doesn't make them less of a physician.
6:14
Speaker 2: It just means that they are not knowledgeable in that
6:18
Speaker 2: area yet, right, So we have to give people grace
6:22
Speaker 2: in that way, or we at least have to have
6:24
Speaker 2: that understanding that someone just may not know yet.
6:29
Speaker 1: And that's kind of what my life goal is, right
6:33
Speaker 1: and I here to fix people, tell them that they're
6:35
Speaker 1: doing it wrong. But these systems, like we join them
6:38
Speaker 1: and they expect us to contort ourselves in ways that
6:41
Speaker 1: harm us until we break and then it pathologizes us. Right,
6:45
Speaker 1: And I think our healthcare system, especially when we're talking
6:48
Speaker 1: about neurodiversity and all the overlap that comes with it,
6:52
Speaker 1: you know, ler Standlos syndrome, pots, dysautonomia, chronic fatigue, COVID,
6:58
Speaker 1: long halo, all these things. Like, we're starting to see
7:01
Speaker 1: our system break, right, and we can't just sweep that
7:05
Speaker 1: under the rug, right, So this is kind of where
7:08
Speaker 1: we need systems podcasts like this, and you know, people
7:11
Speaker 1: in academic people that are willing to swim upstream and say, hey,
7:14
Speaker 1: like can we think about is there a better way?
7:18
Speaker 1: Are we really serving our patients? And for the record,
7:22
Speaker 1: I'm just figuring it out too, right, And I'm super
7:26
Speaker 1: super grateful for the good reviews, the bad reviews. You know,
7:31
Speaker 1: my colleagues and you know patients who entertain my you know,
7:35
Speaker 1: info dumps and the people who are also interested in
7:38
Speaker 1: this and trying to make a difference, So it feels
7:40
Speaker 1: less alone.
7:41
Speaker 2: Yeah. Such a growth model, right, growth mindset. We're all
7:46
Speaker 2: doing what we know how to do, but we're learning
7:48
Speaker 2: and we're striving to do better, and we continue to
7:51
Speaker 2: learn and to pivot and shift and make sometimes different
7:55
Speaker 2: decisions and different choices and different perspectives and modeling that
8:00
Speaker 2: I think is so important too for the population that
8:05
Speaker 2: you and Ice are of people who are nerd divergent,
8:08
Speaker 2: kids who are nerdivergent, Like they need that flexibility as
8:14
Speaker 2: much as we do.
8:15
Speaker 1: It's a scientific method, right, Like you try something, it
8:17
Speaker 1: doesn't work, it's not a failure, right Yep. I read
8:21
Speaker 1: a quote recently it was like, if you knew you
8:23
Speaker 1: had to fail thirty times to become successful, how fast
8:26
Speaker 1: would you try to fail?
8:28
Speaker 2: Yeah?
8:29
Speaker 1: So intersection rising is it's really my baby, right, but
8:33
Speaker 1: it's kind of where all things meet. So my clinical experience,
8:36
Speaker 1: academic interests, and obviously my personal lived experiences. This connection
8:41
Speaker 1: between mental health and medical health. And there's studies out
8:45
Speaker 1: of internal medicine that show that ninety five percent of
8:48
Speaker 1: referrals to psych never make it not surprised access the
8:52
Speaker 1: executive functioning. These people are depressed and we're telling me
8:54
Speaker 1: to call the number of the back of the card. There
8:57
Speaker 1: needs to be a bridge here more between clinician and patient, right,
9:03
Speaker 1: parent and child schools. Like life doesn't happen in silos, right,
9:08
Speaker 1: And the way medicine is set up is really in
9:10
Speaker 1: these little boxes. Go see neuro gosi psych. But we
9:14
Speaker 1: really need a quarterback, someone that's looking at the big
9:17
Speaker 1: picture and seeing, Okay, what's the lower hanging fruit. What
9:21
Speaker 1: are we going to target now? What are we going
9:23
Speaker 1: to kick down the road?
9:24
Speaker 2: Mm hmm. That's often the parent, and you know, as
9:27
Speaker 2: a parent of a nerdive, urgent kid myself, that was
9:29
Speaker 2: the role I had to take. I had to figure
9:31
Speaker 2: out how to weave all these things together. I had
9:33
Speaker 2: to figure out what was missing. I had to be
9:36
Speaker 2: the frontal lobe and make all the appointments and juggle
9:39
Speaker 2: all the things. And yeah, in the absence of that
9:44
Speaker 2: being offered to us, we end up stepping up as a.
9:47
Speaker 1: Parent and so many times, I think even with like
9:54
Speaker 1: the knowledge, right, Like, I mean, think about how difficult
9:57
Speaker 1: it is as you working in this and knowing only people,
9:59
Speaker 1: Like how hard it is to advocate for children. Yeah,
10:03
Speaker 1: imagine not speaking the language, Imagine not having access to healthcare,
10:08
Speaker 1: Imagine not having a car, right yep, imagine barely trying
10:12
Speaker 1: to put food on the tables. Like nobody has time
10:15
Speaker 1: to sit on hold for five hours, let alone go
10:18
Speaker 1: to ot five times a week and do all these
10:20
Speaker 1: like run the EPs, all of it. Yeah, right, And
10:25
Speaker 1: so that's a lot to put on parents that I'm
10:27
Speaker 1: so grateful for the parents that are there and are
10:30
Speaker 1: able to do it. But we sign up to be,
10:33
Speaker 1: you know, pediatric expectitioners or pediatricians, Like we're signing up
10:37
Speaker 1: not just to take care of the child, but to
10:38
Speaker 1: take care of the child's family.
10:41
Speaker 2: So needed, that perspective is so needed, And I think
10:45
Speaker 2: we see it more in pediatrics that we do in
10:47
Speaker 2: general medicine, at least in my experience. But there's still
10:53
Speaker 2: a lot of disconnect between specialties. Right, And I'm going
10:58
Speaker 2: to refer you over here, and now they're taking over.
11:00
Speaker 2: Now I've handed you off, but I haven't even really
11:03
Speaker 2: handed you off. You have to do the work to
11:06
Speaker 2: now get there, to make the appointment, to connect, to
11:09
Speaker 2: do all those things. And you're right, there's so many
11:11
Speaker 2: people who don't have access. And I think, you know,
11:15
Speaker 2: mental health care access is woefully underfunded. It's not covered
11:22
Speaker 2: with insurance a lot, or it's not covered enough. You know,
11:25
Speaker 2: my own family, I'm self employed, so I have to
11:28
Speaker 2: get my own health care insurance. I've done that for
11:32
Speaker 2: twenty years or more at this point. And every year
11:37
Speaker 2: we have to weigh the cost of the premium with
11:41
Speaker 2: like how much it covers the cost of what we
11:44
Speaker 2: have to do. And we value therapy in this family,
11:48
Speaker 2: and therapy, you know, just this last year, I couldn't
11:53
Speaker 2: afford the premium anymore because it was insane, way more
11:56
Speaker 2: than my mortgage, way more than my mortgage, and so
12:00
Speaker 2: I had to switch to something less where mental health
12:03
Speaker 2: care now costs a lot more every time we go,
12:07
Speaker 2: and so you kind of pay for it one way
12:08
Speaker 2: or the other, right, And if you don't have insurance,
12:12
Speaker 2: my gosh, there are very few people who can afford
12:16
Speaker 2: healthcare without insurance at all all. It's just, you know,
12:20
Speaker 2: as you said at the beginning, the system is broken,
12:24
Speaker 2: and what can we do as individuals to make that
12:27
Speaker 2: function better at least for our families, Like, we also
12:31
Speaker 2: have to think about protecting our energy. Right, if you're
12:34
Speaker 2: the parent like I was, who was managing all of
12:36
Speaker 2: this and trying to weave all of this together and
12:40
Speaker 2: create this team for my kid, I don't also have
12:43
Speaker 2: the energy to try to change anybody else's mind at
12:47
Speaker 2: the same time or change the system.
12:49
Speaker 1: It's really it's a full time job. And you know,
12:53
Speaker 1: one thing is a little bit of a tangent. But
12:55
Speaker 1: one of the things that I see in practice too
12:57
Speaker 1: that always gets me is like they work with such
12:59
Speaker 1: like observant kids, right, kids that already feel like a burden,
13:04
Speaker 1: that are already like right, So then we talk about
13:08
Speaker 1: the money aspect of how much their therapy is going
13:11
Speaker 1: to cost, what is that going to do? And if
13:13
Speaker 1: I was a kid, it'd make me be like, I'm fine,
13:16
Speaker 1: I'm asking.
13:17
Speaker 2: M Yeah, they're trying to protect the parent.
13:21
Speaker 1: They already don't want to be a burden. They're already
13:23
Speaker 1: feeling bad about everything, right, So then our system kind
13:27
Speaker 1: of creates this identified patient and you know, we see
13:30
Speaker 1: where that goes. So intersectionalizing is just really the intersection
13:35
Speaker 1: of everything. It's a place where we can slow down,
13:38
Speaker 1: look at the whole picture and really see what's in
13:41
Speaker 1: front of us.
13:42
Speaker 2: Right.
13:43
Speaker 1: It's really cool because when we see beyond the externalized behaviors,
13:46
Speaker 1: beyond the diagnoses, right, there's these unspoken patterns and these
13:51
Speaker 1: beautiful adaptations that are just like so brilliant that these
13:55
Speaker 1: little kids developed on their own, and they're just hidden
13:57
Speaker 1: beneath the surface. Yeah, sometimes these are their greatest strengths.
14:02
Speaker 2: Yeah, let's talk a little bit about the subtlety of
14:06
Speaker 2: complex kids. Sometimes on your website you say complex kids
14:11
Speaker 2: are often invisible in plain sight. I resonated so much
14:15
Speaker 2: with that when I read it. My own kid had
14:18
Speaker 2: a diagnosis of ADHD at aged six, barely six, and
14:22
Speaker 2: then around age ten, I was like, there's something else
14:25
Speaker 2: going on here. This isn't explaining all of it. There's
14:28
Speaker 2: definitely something else going on here. And we started down
14:30
Speaker 2: the path of considering autism, and the first two clinicians
14:36
Speaker 2: both said, no, ADHD fits better. You know, he's looking
14:40
Speaker 2: at me in the eye and he's having this two
14:42
Speaker 2: way conversation, and it was so difficult, but I just
14:48
Speaker 2: knew in my gut that I was on the right path,
14:50
Speaker 2: and I finally connected with a clinician who specialized in
14:55
Speaker 2: the sort of I can't do this without air quotes,
14:57
Speaker 2: high functioning autism right that level one, that really subtle presentation,
15:03
Speaker 2: And in her report she actually wrote, he is the
15:07
Speaker 2: clinical definition of hiding in plain sight with his autism diagnosis,
15:14
Speaker 2: and it just gave me goosebumps. That was years ago.
15:17
Speaker 2: He's twenty two now. But it took so much effort
15:21
Speaker 2: and so much time on my part to find anybody
15:23
Speaker 2: who would even people in this was a mental health
15:28
Speaker 2: pediatric practice who were telling me. And this was somebody
15:32
Speaker 2: after he got the diagnosis. He was like, I don't
15:34
Speaker 2: agree with that diagnosis. Your kid just had a conversation
15:38
Speaker 2: with me. It was reciprocal. He's looking me in the eye.
15:40
Speaker 2: I'm like, he learned how to do these things right.
15:43
Speaker 2: And not every kid on the spectrum has those specific traits.
15:48
Speaker 2: But how do we as parents helped to navigate that
15:55
Speaker 2: sort of thing when our kids are hiding in plain sight,
15:57
Speaker 2: when they are falling through the cracks? How do we
15:59
Speaker 2: add uvocate with the system, with the pediatrician or the
16:04
Speaker 2: GP or whoever we are trying to get some help
16:07
Speaker 2: from Yeah.
16:09
Speaker 1: You know, it always makes to laugh when people would
16:11
Speaker 1: say like, well, they don't look autistic. I was saying, like,
16:14
Speaker 1: what does an autistic person look like? Yeah? Right? And
16:18
Speaker 1: I always talk about the diagnostic DSM, and you know
16:23
Speaker 1: the flaws about it, right, And number one, a lot
16:25
Speaker 1: of the diagnosis was created off voice. Secondly, it's external symptoms,
16:30
Speaker 1: those things that you can see. Yeah, TREDHD is going
16:33
Speaker 1: to be in attention, fidgetiness, so forth, right, But that's
16:37
Speaker 1: not necessarily what ADHD is. It's actually hyper focus, issues
16:40
Speaker 1: with the execut to functioning. Yep, you know autism, lack
16:44
Speaker 1: of empathy right, where they don't have social skills. It's
16:48
Speaker 1: actually the opposite, where they have hyper empathy. They just
16:51
Speaker 1: don't know what they heck to do. Yes, and there's
16:52
Speaker 1: this double empathy problem yep, right, yep, you know, lack
16:56
Speaker 1: of emotions versus like lexithymia and problems with inter reception. Right.
17:01
Speaker 1: So all of these things, if they're invisible, you're not
17:04
Speaker 1: going to see them right in this diagnostic. This aid
17:06
Speaker 1: OS tests is side. You know, do some diagnostics. It's
17:09
Speaker 1: the gold standard, right.
17:11
Speaker 2: Yep, The gold standard said no to me.
17:14
Speaker 1: But the gold standard is only looking at externalized symptoms,
17:19
Speaker 1: and you know, if these kids are high maskers, then
17:22
Speaker 1: they're not going to catch it. Yeah, there's a lot
17:24
Speaker 1: of subtleties. So, yeah, a lot of the kids that
17:27
Speaker 1: we work with, they're these incredibly bright, sensitive, observant kids.
17:32
Speaker 1: They've learned to read the room. They mask, they blend in,
17:35
Speaker 1: they people please, they say the right things there on paper,
17:39
Speaker 1: they're finding great. Parents come in the office with the
17:42
Speaker 1: kids and they're like, we're having trouble with them, and
17:46
Speaker 1: how are they doing at school? They're great at school?
17:48
Speaker 1: How are they in a soccer They're great at soccer.
17:51
Speaker 1: Do they have friends? They have a small group of friends, right,
17:54
Speaker 1: all of these things, but they're melting down, right, And
17:59
Speaker 1: then in the years go on, is like, you know, yeah,
18:01
Speaker 1: they are a pleasure to have in class, but they're quiet,
18:04
Speaker 1: or maybe they're a little anxious so they're super hard
18:07
Speaker 1: on themselves. Yeah, or they're very serious. Sometimes they're like
18:11
Speaker 1: a little quirky, right, And at home parents have seen
18:14
Speaker 1: the complete opposite. They're seeing these huge meltdowns, these full
18:19
Speaker 1: stop shutdowns, right, like constant exhaustion, endless physical complaints and ailments,
18:25
Speaker 1: belly aches, headaches, right, mood swings, fighting with their siblings,
18:28
Speaker 1: and there's this dissonance of like, how does this not match?
18:33
Speaker 2: Right?
18:35
Speaker 1: And it's confusing. They look like they're coping from the
18:37
Speaker 1: you know, outside, but on the inside they're really really struggling,
18:40
Speaker 1: and they're working twice as hard in a world that
18:44
Speaker 1: wasn't created for them. So yeah, I think the saddest
18:47
Speaker 1: part for me is that these kids oftentimes have no
18:50
Speaker 1: idea how awesome they are or how hard they're trying.
18:54
Speaker 1: They just know that their parents are at their wits
18:57
Speaker 1: end with them. They feel like they don't fit in
19:00
Speaker 1: and everyone else seems to be having an easier time
19:04
Speaker 1: than then, and somehow they pull it off, but they're exhausted. So,
19:09
Speaker 1: you know, these kids are especially these subtle ones, right,
19:12
Speaker 1: like the ones like your boy, the ones that aren't
19:13
Speaker 1: picked up by the ados. Right, these kids become total
19:17
Speaker 1: black belts at camouflaging, experts at it. And it's what
19:22
Speaker 1: a heck of a skill to have in our pocket, right,
19:24
Speaker 1: And to a degree, all of us do a degree
19:27
Speaker 1: of masking. And you go to the bank and we say, hi,
19:29
Speaker 1: how are you? We go to right, Yeah, but it's
19:31
Speaker 1: like it's not all the time, and we're not masking
19:34
Speaker 1: at home in our bedrooms, right. And I think sometimes
19:38
Speaker 1: masking is so pervasive that a lot of these kids
19:40
Speaker 1: don't even know whose they are. So when we talk
19:43
Speaker 1: about kids invisible and plaining sight, this is what I'm
19:46
Speaker 1: talking about.
19:47
Speaker 2: Right.
19:47
Speaker 1: They're working over time to survive in systems that weren't
19:50
Speaker 1: designed for them. It's really like being left handed in
19:54
Speaker 1: the right handed world. Okay, you can be left handed,
19:57
Speaker 1: but you're going to live in a right handed world,
19:59
Speaker 1: right handed, right handed desks, no golf clubs, right, yeah,
20:03
Speaker 1: figure it out. But there's nothing inherently wrong with being
20:06
Speaker 1: left handed.
20:07
Speaker 2: Yeah, yeah, it's just one way to be Yep. I
20:12
Speaker 2: talked with an ADHD coach, Jeff Copper I've talked with
20:15
Speaker 2: many times before. He's been on the podcast as well.
20:17
Speaker 2: He hosts Attention Talk Radio. He's been doing it for
20:20
Speaker 2: years and years, and he has people parents or loved
20:26
Speaker 2: ones of adults do and exercise where they have to
20:30
Speaker 2: make a meal with their non dominant hand so that
20:34
Speaker 2: they can feel what it feels like to be that
20:39
Speaker 2: left handed person in the right handed world. Right to
20:42
Speaker 2: be the one who the world wasn't built for That
20:46
Speaker 2: sticks with me all the time. I think just thinking
20:48
Speaker 2: about trying to do it with my left hand makes
20:51
Speaker 2: me want to like run into a corner and crawl
20:53
Speaker 2: underneath something and hide like it would be a disaster.
20:58
Speaker 2: I love that analogy. I think it's really powerful for
21:01
Speaker 2: parents and educators, and.
21:03
Speaker 1: How many people would be like, Bonica, stop spilling everything.
21:06
Speaker 1: Why is it that hard.
21:07
Speaker 2: It's not so hard. I can do it, see, or
21:10
Speaker 2: you did it the other day. Why can't you do
21:12
Speaker 2: it today?
21:14
Speaker 1: Right?
21:19
Speaker 2: If you've been listening for a while, you're familiar with
21:22
Speaker 2: my back to school prep Week, where I set neurodivergent
21:25
Speaker 2: kids and their families up for success right when the
21:28
Speaker 2: school year starts. There's another podcast that will help you
21:31
Speaker 2: navigate the rest of the school year. It's called Opportunity Gap,
21:36
Speaker 2: and it's all about special education. Let's be real, all
21:40
Speaker 2: those acronyms alone I EP five, O four, FBA, BP
21:44
Speaker 2: can be overwhelming. All you want is for your kid
21:48
Speaker 2: to have the opportunity for success. Right, you'll hear from
21:52
Speaker 2: special educators, child psychologists, and other learning experts who know
21:57
Speaker 2: their stuff and give you real lifeistic advocacy tools. I
22:02
Speaker 2: listened to Opportunity Gap and I was blown away. Julian
22:06
Speaker 2: Savadra and his guests break it down in simple terms,
22:11
Speaker 2: highlight where to focus your energy, and give you simple
22:15
Speaker 2: steps to advocate efficiently. So if you've ever walked out
22:19
Speaker 2: of a school meeting wondering what just happened, go search
22:23
Speaker 2: for Opportunity Gap in your podcast app. That's Opportunity Gap.
22:37
Speaker 2: Can we talk a little bit about misdiagnosis because I
22:42
Speaker 2: think that is really common for neurodivergent people in general,
22:47
Speaker 2: like it happens to adults too. How do we navigate
22:51
Speaker 2: that as parents? I talk a lot about really following
22:54
Speaker 2: your gut if you really believe, like I did with
22:57
Speaker 2: autism with my kid, going until I trusted the outcome.
23:03
Speaker 2: And when I found this person who this was her specialty,
23:07
Speaker 2: I had said at the beginning, whatever her outcome is,
23:11
Speaker 2: that's what it is, and that will be the end
23:14
Speaker 2: of this for me. If it's the end, right, because
23:17
Speaker 2: I knew that she was going to dig as deep
23:20
Speaker 2: as she could dig. And she actually said in our
23:23
Speaker 2: first meeting, my son was there, she was talking to
23:26
Speaker 2: him a little bit, and she said, I'm gonna be honest.
23:28
Speaker 2: I don't see it, but I'm going to do all
23:30
Speaker 2: the evaluations. I'm gonna have all the conversations with him,
23:35
Speaker 2: and in the end there he was hiding in play
23:37
Speaker 2: insight right, And so I was compelled to advocate for
23:42
Speaker 2: that to keep going. And people in the family were like, no,
23:45
Speaker 2: we don't see it. Like everybody was like, we don't
23:48
Speaker 2: see it except me, And I had to be able
23:52
Speaker 2: to do that. I had to be able to stand
23:55
Speaker 2: up and say, I don't believe this is true yet,
23:59
Speaker 2: I'm still searching for an answer I haven't gotten yet.
24:02
Speaker 2: And how do we do that when maybe we did
24:06
Speaker 2: get a diagnosis but it doesn't feel right right if
24:10
Speaker 2: it's the wrong diagnosis, or how can we even spot
24:15
Speaker 2: that it's the wrong diagnosis if maybe we do just
24:18
Speaker 2: take it at face value.
24:20
Speaker 1: It's funny because I work with a psychologist who sounds
24:23
Speaker 1: much like yours, where I like, it's like, I know
24:26
Speaker 1: that when people see here, they're never gonna have to
24:28
Speaker 1: reinvent the story. This is it, right? Yeah, But it's
24:32
Speaker 1: so hard because when people have had testing, they've had
24:35
Speaker 1: years of therapy, they've had all these things, and nothing
24:37
Speaker 1: is really working. And I'm like, hey, I want you
24:40
Speaker 1: to go to the testing. You're like, I can't pay
24:42
Speaker 1: for this. We just had it with this person, and
24:45
Speaker 1: I'm like, I know you did right. But when people
24:49
Speaker 1: come into my office in primary care, how do you
24:52
Speaker 1: even get us to refer right? And if we've heard
24:56
Speaker 1: genurology or psych how do we know that it's gonna
24:59
Speaker 1: be caught right?
25:01
Speaker 2: Yeah, the outcome you want.
25:03
Speaker 1: And so I always tell parents, get on Google, read everything,
25:07
Speaker 1: get on Facebook groups, connect, educate yourself, listen to podcasts
25:10
Speaker 1: like this. It's really interesting when you think about diagnostic codes, right, Like,
25:15
Speaker 1: I honestly think most clinicians will know when something feels off.
25:20
Speaker 1: But if we don't have a category of diagnosis, these
25:22
Speaker 1: limited categories to put it in, where do you put it?
25:26
Speaker 1: And there are diagnostic codes for being bitten by an orca,
25:30
Speaker 1: walking into a lamp post I'm not kidding. W twenty
25:33
Speaker 1: two point two is walking into a lamppost, is burned
25:39
Speaker 1: due to water skis being on fire, but there is
25:42
Speaker 1: no diagnostic code for twice exceptionality.
25:44
Speaker 2: Yep.
25:45
Speaker 1: So sometimes labels fit, sometimes they don't. Sometimes what we're
25:51
Speaker 1: actually seeing is a nervous system that's stuck in survival
25:53
Speaker 1: mode labeling a depression or sensory processing differences, convergence and
26:00
Speaker 1: sufficiencies with their eyes, trauma and things like chronic misattunement,
26:06
Speaker 1: medical trauma, family systems, and who are enmeshed and codependent.
26:11
Speaker 1: These aren't going to show up on these intake forms,
26:14
Speaker 1: these questionnaires. Neither will auditory processing. So yeah, they're not
26:18
Speaker 1: going to get diagnosed. And sometimes it's a kid who's
26:21
Speaker 1: just deeply gifted, intuitive and sweet, right, so we miss it.
26:27
Speaker 1: And you know, the downfalls is that when we have
26:29
Speaker 1: limited recognition and understanding, we therefore have limited access to
26:34
Speaker 1: support in services, right, and then opportunities to expand research
26:39
Speaker 1: to improve care systems. So it makes sense why these
26:43
Speaker 1: subtle kids are just kind of like the forgotten ones.
26:47
Speaker 1: And again it's not a fell young provider. I think
26:51
Speaker 1: as more information comes out and as we're like, it's
26:54
Speaker 1: going to become the failure of the provider, right, Like,
26:56
Speaker 1: people they got to learn and this is my life's
26:59
Speaker 1: work is helping people see it so clearly that they
27:01
Speaker 1: can see it. Right, there's no reason why that we
27:06
Speaker 1: shouldn't be asking when a kid comes in, what happened here,
27:09
Speaker 1: what's the context? What does their behavior protect for them.
27:13
Speaker 1: What is this behavior communicating? Did they walk into a
27:16
Speaker 1: lamppost and that's why they hurt? Did their water skis
27:19
Speaker 1: catch on fire that's why they were burned? Or did
27:22
Speaker 1: something happen and is that what preceded their selective mutism?
27:26
Speaker 2: Mm hmm. We always have to dig deeper because it
27:29
Speaker 2: is sort of this invisible thing. Mental health is sort
27:32
Speaker 2: of invisible, and when we're not asking questions, we're not
27:37
Speaker 2: getting to the root. How do you change anything if
27:39
Speaker 2: you don't change why it happens.
27:40
Speaker 1: That's the issue with these external symptoms, right, And oftentimes
27:44
Speaker 1: do they think about like an anxiety, like it makes
27:47
Speaker 1: sense when people are depressed, Maybe they have damn good
27:50
Speaker 1: reasons to be depressed and it's not a pathology, right right.
27:55
Speaker 1: Bormante talks about substance abuse in me says, you know,
27:58
Speaker 1: like why is it that when we send people to rehab,
28:00
Speaker 1: oftentimes people detalks will get off drugs, they discharged and
28:04
Speaker 1: go back into the world, and oftentimes they'll relapse and
28:06
Speaker 1: they say, why you're doing so great, Well, you didn't
28:09
Speaker 1: treat the pain. You have to treat the pain. Right.
28:12
Speaker 1: This is how I kind of see these neurodive virgin
28:14
Speaker 1: kids and families is like like aba stuff, Like we're
28:18
Speaker 1: just putting band aids on things like who have to
28:19
Speaker 1: get to the root. And humans have two needs number
28:23
Speaker 1: one attachment belonging. Number two authenticity being who you are.
28:27
Speaker 1: Attachment will always trump authenticity, but no one should ever
28:31
Speaker 1: have to sacrifice one for the other. And this is
28:35
Speaker 1: what we ask nerdi virgin kids to do. Yes, and
28:38
Speaker 1: when they mask, we say, you are doing so great,
28:42
Speaker 1: You're such a pleasure to have around. Yeah, maybe autism
28:46
Speaker 1: and maybe these external symptoms are just stress symptoms and
28:51
Speaker 1: in the right habitat, they don't.
28:53
Speaker 2: Exist exactly, Yeah, exactly. When we create neuroaffirming and environments,
29:01
Speaker 2: being neurodivergent doesn't stand out so much. It isn't seen
29:05
Speaker 2: as a problem, It isn't seen as something that needs
29:08
Speaker 2: to be changed or fixed. Yeah, we have definitely a
29:12
Speaker 2: fix it mentality, and part of that just comes from
29:15
Speaker 2: deep caring. We want things to be better, easier for
29:20
Speaker 2: our kids, right, we don't want to see them struggle.
29:23
Speaker 2: But if we stay in denial with that, we can't
29:27
Speaker 2: help them. If we stay focused on fixing, we're not
29:30
Speaker 2: helping them. We're just trying to make them fit. That's
29:33
Speaker 2: all trying to fix does It's just trying to make
29:36
Speaker 2: them fit in that system, that right handed world. We're
29:41
Speaker 2: trying to push them into it. Again, we have to
29:43
Speaker 2: look at the whole picture. And you know a lot
29:46
Speaker 2: of times when I talk to parents and maybe kids
29:49
Speaker 2: resistant to diagnosis, maybe a parent's resistant to diagnosius, then
29:53
Speaker 2: we can step back and we can say, Okay, the
29:55
Speaker 2: label doesn't matter so much. It's important to access services,
29:59
Speaker 2: to get insurance to cover things. That kind of thing, right,
30:02
Speaker 2: It can help for advocating at school. But the bottom
30:05
Speaker 2: line is that there's this list of strengths and weaknesses
30:09
Speaker 2: for this individual person, and we need to help them
30:13
Speaker 2: navigate those given the world that they have, the environment
30:17
Speaker 2: that we create for them. Right, And yes, we want
30:21
Speaker 2: to change a lot of these systems. We want to
30:24
Speaker 2: change education so that they're not othered when they go
30:30
Speaker 2: to school. We want to change the mental health coverage
30:35
Speaker 2: and the medical field and the cyst all these systems
30:37
Speaker 2: that are so rigid. But the bottom line is, if
30:41
Speaker 2: my kid's going to school every day and I can't
30:43
Speaker 2: remember turning his homework, it doesn't matter what diagnosis that's
30:47
Speaker 2: attributed to right at that moment, we can work on
30:52
Speaker 2: how do we help with this specific thing. And I
30:56
Speaker 2: think when you take that mindset, you can sort of
30:59
Speaker 2: add add that to the diagnosis when it's the right diagnosis.
31:04
Speaker 2: But it's not covering all the things. As you're talking about.
31:07
Speaker 2: I get people all the time you ask me like,
31:09
Speaker 2: how do I get dysgraphia diagnosed? Well, it's not really
31:12
Speaker 2: in the DSM, but you know, you might find an
31:16
Speaker 2: ot lots of ots. We'll talk about dysgraphia. I mean,
31:19
Speaker 2: that's what we did. That's how we got a piece
31:21
Speaker 2: of paper that was formal that mentioned dysgraphia on it.
31:24
Speaker 2: You know, the DSM really needs an update. It is
31:28
Speaker 2: way past time. The last update was when we were
31:33
Speaker 2: seeking that additional autism diagnosis, and it was new that
31:36
Speaker 2: you could even diagnose both, which is another whole conversation
31:40
Speaker 2: to have about the fact that sometimes you're restricted from
31:44
Speaker 2: putting two things together. It's just crazy. There's so many
31:49
Speaker 2: more things that we could talk about. We've already reached
31:54
Speaker 2: our thirty minute mark, where parents can often find the
31:58
Speaker 2: time to squeeze it in or some times find the time.
32:01
Speaker 2: So I want to wrap up now. And we'll have
32:04
Speaker 2: you back and we'll talk some more about some of
32:06
Speaker 2: this stuff because there's so much more to talk about.
32:09
Speaker 2: But will you let everybody know before we go, what
32:13
Speaker 2: is one step they could take right now? If I,
32:18
Speaker 2: you know, myself twenty years ago, when I'm suspecting something,
32:24
Speaker 2: people aren't listening maybe, or I'm unsure of myself as
32:29
Speaker 2: the parent, and what I'm thinking, what is the one
32:33
Speaker 2: first next step that I could take to start moving
32:37
Speaker 2: in a direction of getting answers or growth or helping
32:41
Speaker 2: my kid?
32:42
Speaker 1: Yeah, I mean I think slow down. Yes, And you know,
32:47
Speaker 1: we kind of catastrophze and we get all this and
32:49
Speaker 1: I think this is the fix it mentality? Right? Is
32:51
Speaker 1: it so uncomfortable that we want to make these problems
32:54
Speaker 1: go away because it's uncomfortable in our bodies? Is uncomfortable
32:57
Speaker 1: to know our kids are feeling this way vice versa. Right,
33:00
Speaker 1: But we can just start observing without judgment, like get curious, notice,
33:06
Speaker 1: like what are the things that cause them to be dysregulated? Yeah,
33:10
Speaker 1: what are the things that seem to calm them down? Right?
33:13
Speaker 1: What's happening around those moments? What are the sensory environments?
33:17
Speaker 1: Like right with the demands and experiences they're facing. What
33:21
Speaker 1: always think about. You know, my son was learning about
33:24
Speaker 1: like different habitats in school and it occurred to me that, like, well,
33:28
Speaker 1: if there was an Arctic fox, it would not thrive
33:31
Speaker 1: in a desert habitat.
33:32
Speaker 2: That feels obvious, Yeah, and.
33:35
Speaker 1: Is that not what's happening to our nerdi vidging kids
33:38
Speaker 1: when we send them in these school systems. And maybe
33:42
Speaker 1: for parents, we're just figuring out, hey, what kind of
33:45
Speaker 1: habitat do our kids thrive in? Maybe we ask them
33:49
Speaker 1: and we go from there, right, And I always believe
33:52
Speaker 1: in high expectations with recentall accommodations. But parents, slow down,
33:58
Speaker 1: trust your gut, you know you're kid.
34:01
Speaker 2: I love that. Yeah, that's slowed down as.
34:03
Speaker 1: Everything find other parents, find other people. There's groups on
34:07
Speaker 1: Facebook that are like autistic adults that parents can ask
34:10
Speaker 1: questions too and they get answers within twenty four hours.
34:13
Speaker 1: And like also as communities, so podcasts like this.
34:17
Speaker 2: Yeah, there's a lot of information out there now, there's
34:18
Speaker 2: a lot that you can consume. But just with slowing down,
34:22
Speaker 2: just as that goes, like, don't try to do it
34:24
Speaker 2: all at once. That's a big one for me and
34:27
Speaker 2: I when I hear you say slow down, it reminds
34:29
Speaker 2: me of that, Like, we have to take our time
34:32
Speaker 2: to get this right. And as much as we want
34:35
Speaker 2: to change everything at one time, it's just not possible.
34:39
Speaker 2: And when we dilute our efforts into multiple buckets, now
34:43
Speaker 2: nothing is getting the focus and the energy that it deserves,
34:47
Speaker 2: and that's required to really move the needle. So I
34:51
Speaker 2: love that that was your first advice for people, is
34:55
Speaker 2: to slow down. Like, plus, you just miss the good
34:57
Speaker 2: stuff when you're so focused on everything that's hard. Yeah,
35:00
Speaker 2: there's no room for joy. You have locked it out.
35:03
Speaker 2: You have to make room for that, you have to
35:06
Speaker 2: notice it, So slowing down I love that advice.
35:10
Speaker 1: Talk about all these parenting strategies. One of the most
35:13
Speaker 1: common ones I say is blow up an air mattress
35:14
Speaker 1: in the living room and you will see your kid
35:17
Speaker 1: come to life. Right. Yeah, like play, eat on the floor,
35:22
Speaker 1: these sorts of things like get in their level and
35:24
Speaker 1: be attuned and that's what's healing.
35:27
Speaker 2: Love that. Let everybody know where they can find GEO
35:30
Speaker 2: onlines that can connect and maybe learn more from you.
35:33
Speaker 1: Yeah, Intersection rising dot com And I do have a
35:37
Speaker 1: small Instagram, but I don't really use it, so quite
35:39
Speaker 1: not that useful. But if you send the message today,
35:41
Speaker 1: I will see it and I can get back to you.
35:43
Speaker 1: But intersection rising dot com and you'll find my contact
35:47
Speaker 1: information there.
35:49
Speaker 2: Awesome, and we'll link it up in the show notes
35:50
Speaker 2: for everyone, so it's really easy to find. And those
35:53
Speaker 2: show notes are at Parenting ADHD and autism dot com
35:56
Speaker 2: slash three two six for episode three. Thank you so much,
36:01
Speaker 2: Monica for this perspective, this reminder, this permission that we
36:07
Speaker 2: can trust our gut as a parent, that we may
36:11
Speaker 2: see things that other people don't see, and that it
36:14
Speaker 2: is totally within our right to advocate, to keep going
36:21
Speaker 2: to make sure that diagnoses are correct, to make sure
36:24
Speaker 2: that our kids are being seen, heard, and understood in
36:28
Speaker 2: the environments that they're in. It's really really important work,
36:32
Speaker 2: and I'm so thankful that we got to connect and
36:37
Speaker 2: share this with everybody listening.
36:39
Speaker 1: Thank you.
36:40
Speaker 2: I'll see everybody next time. Take good care. I see you.
36:46
Speaker 2: You're doing hard and meaningful work and you don't have
36:49
Speaker 2: to do it alone. If you found this episode helpful,
36:52
Speaker 2: share it with someone who needs it and leave a
36:55
Speaker 2: quick review so others can find this support too. When
36:58
Speaker 2: you're ready for next step. The Regulated Kids Project is
37:02
Speaker 2: here with the tools, coaching, and community to help you
37:06
Speaker 2: raise a more regulated, resilient child. Get more info at
37:10
Speaker 2: regulated kids dot com.