September 3, 2025 • 37 mins
Your child’s biggest struggles might be the very things no one else sees.
In this powerful conversation with pediatric nurse practitioner and mental health specialist Monica Garty Juice, we explore how subtle signs of neurodivergence often get dismissed, misdiagnosed, or go completely unnoticed — and what that means for our kids. Monica shares why so many complex kids are “hidden in plain sight,” how masking shows up in daily life, and what it looks like to finally be seen.
We also talk about how parents often become the “quarterback” of their child’s care team — even when they’re exhausted and overwhelmed — and why slowing down and tuning into the full picture is one of the most powerful things we can do.
If your child looks like they’re holding it together, but then melting down at home… this episode will feel like a deep exhale.
Listen now and let this be your reminder: You’re not imagining it. You’re not alone. And you can trust your gut.
You can find additional resources at parentingadhdandautism.com and Regulated Kids.com — because it’s not just about the struggles, it’s about progress, one step at a time.
Show notes and more resources at parentingadhdandautism.com/326
Become a supporter of this podcast: https://www.spreaker.com/podcast/beautifully-complex--6137613/support.
In this powerful conversation with pediatric nurse practitioner and mental health specialist Monica Garty Juice, we explore how subtle signs of neurodivergence often get dismissed, misdiagnosed, or go completely unnoticed — and what that means for our kids. Monica shares why so many complex kids are “hidden in plain sight,” how masking shows up in daily life, and what it looks like to finally be seen.
We also talk about how parents often become the “quarterback” of their child’s care team — even when they’re exhausted and overwhelmed — and why slowing down and tuning into the full picture is one of the most powerful things we can do.
If your child looks like they’re holding it together, but then melting down at home… this episode will feel like a deep exhale.
Listen now and let this be your reminder: You’re not imagining it. You’re not alone. And you can trust your gut.
You can find additional resources at parentingadhdandautism.com and Regulated Kids.com — because it’s not just about the struggles, it’s about progress, one step at a time.
Show notes and more resources at parentingadhdandautism.com/326
Become a supporter of this podcast: https://www.spreaker.com/podcast/beautifully-complex--6137613/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
The saddest part for me is that these kids oftentimes
have no idea how awesome they are, how hard they're trying.
They just know that their parents are at their wits
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.
Speaker 2 (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
(00:42):
if you want more support, join our free community at
hub dot beautifully complex dot life. Hi everyone, welcome back
to your beautifully complex. I am excited to have with
me Monica Gardi Jews, and we are going to talk
about subtle presentations of neurodivergence, how sometimes we experience misdiagnoses
(01:09):
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?
Speaker 1 (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, right, 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, further training, became a pediatric and adolescent
(01:47):
mental health consultant specialist, and through the Trauma Research Foundation,
I currently am clinical faculty at UCLA School of Nursing
teach about Trauma, neudiversity and their pediatrics in the owner
of Intersection Rising, which I'll tell you about. But more importantly,
I am a mom of a really, really fantastic little
boy who has no idea how much better I am
(02:10):
because of him. And I think, you know, for parents
listening to this, we're all listening to be better, right.
Speaker 2 (02:16):
Yeah.
Speaker 1 (02:16):
So, Intersection Rising is a coaching consulting company that I made,
and it was developed 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 way steep in my own healing journey, working with
(02:38):
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 healthful provider? And are
my healthcare providers actually helping me? And honestly, sometimes sure,
but a lot of times not really right. So my
(02:59):
next question really became was 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. And you know, our healthcare systems will talk
more about but they really weren't created for nerdivergent minds
(03:20):
in 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.
Speaker 2 (03:31):
Yeah.
Speaker 1 (03:31):
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 at the
very least people would feel heard or seen and believed
by me, and that in itself is such a crucial
element and healing.
Speaker 2 (03:47):
Yes, yeah, it's so much of what we focus on
the podcast and the work idea, like we all just
deserve to feel seen, heard and understood, and when we do,
it changes so much. It changes our nervous it changes
our confidence, it changes the way we show up for others.
It's it's really that crucial piece that I think is
(04:08):
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.
Speaker 1 (04:25):
I work in a private practice and in these big
hospital systems, after those visits, right, patients get called with
survey how was your visit? Did your doctor listen to
did blah blah blah blah? Right? Well, I once had
this review they received from a patient's parent saying that
I hated doctors. Right. I was like, man, because one,
that's untrue, right yeah, Two what the heck? And this
(04:48):
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 healthcare they are people too, right, Yeah,
the training they had to go through to get there,
to get a in front of you, it's evidence that
they aren't uncarrying people. Right, Nurses and doctors, they're some
of the best humans I know, and they're burnt out, frustrated,
(05:09):
wrestling poster syndrome and debt in the same way as
everyone else. Right, These systems were designed for efficiency, more portly,
they were designed by people who aren't healthcare providers themselves.
So our health system is really functioning as it was
designed to do. Right, And two things can be true
(05:30):
at the same time. There can be parts of healthcare
and 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 with talking about like martialized
populations in these subtle presentations that we're talking about today.
Speaker 2 (05:51):
Yeah, 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.
(06:14):
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.
Speaker 1 (06:29):
And that's kind of what my life goal is, right
and I 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. Right,
And I think our healthcare system, especially when we're talking
about neurodiversity and all the overlap that comes with it,
(06:52):
you know, ler Standlos syndrome, pots, dysautonomia, chronic fatigue, COVID,
long halo, all these things. Like, we're starting to see
our system break, right, and we can't just sweep that
under the rug, right, So this is kind of where
we need systems podcasts like this, and you know, people
in academic people that are willing to swim upstream and say, hey,
(07:14):
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, right, And I'm super
super grateful for the good reviews, the bad reviews. You know,
my colleagues and you know patients who entertain my you know,
(07:35):
info dumps and the people who are also interested in
this and trying to make a difference, So it feels
less alone.
Speaker 2 (07:41):
Yeah. 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
(08:05):
you and Ice are of people who are nerd divergent,
kids who are nerdivergent, Like they need that flexibility as
much as we do.
Speaker 1 (08:15):
It's a scientific method, right, Like you try something, it
doesn't work, it's not a failure, right Yep. I read
a quote recently it was like, if you knew you
had to fail thirty times to become successful, how fast
would you try to fail?
Speaker 2 (08:28):
Yeah?
Speaker 1 (08:29):
So intersection rising is it's really my baby, right, 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 there's studies out
of internal medicine that show that ninety five percent of
referrals to psych never make it not surprised access the
(08:52):
executive functioning. These people are depressed and we're telling me
to call the number of the back of the card. There
needs to be a bridge here more between clinician and patient, right,
parent and child schools. Like life doesn't happen in silos, right,
And the way medicine is set up is really in
these little boxes. Go see neuro gosi psych. But we
(09:14):
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?
Speaker 2 (09:24):
Mm hmm. That's often the parent, and you know, as
a parent of a nerdive, urgent 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.
Speaker 1 (09:47):
Parent and so many times, I think even with like
the knowledge, right, Like, I mean, think about how difficult
it is as you working in this and knowing only people,
Like how hard it is to advocate for children. Yeah,
imagine not speaking the language, Imagine not having access to healthcare,
(10:08):
Imagine not having a car, right yep, 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 EPs, all of it. Yeah, right, And
so that's a lot to put on parents that I'm
so grateful for the parents that are there and are
(10:30):
able to do it. But we sign up to be,
you know, pediatric expectitioners or pediatricians, Like we're signing up
not just to take care of the child, but to
take care of the child's family.
Speaker 2 (10:41):
So needed, that perspective is so needed, And I think
we see it more in pediatrics that we do in
general medicine, at least in my experience. But there's still
a lot of disconnect between specialties. Right, And 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
(11:03):
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, there's so many
people who don't have access. And I think, you know,
mental health care access is woefully underfunded. It's not covered
with insurance a lot, or it's not covered enough. You know,
(11:25):
my own family, I'm self employed, so I have to
get my own health care insurance. I've done that for
twenty 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,
(11:48):
and therapy, you know, just this last year, I couldn't
afford the premium anymore because it was insane, 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
(12:08):
or the other, right, And if you don't have insurance,
my gosh, there are very few people who can afford
healthcare without insurance at all 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
(12:31):
have to think about protecting our energy. Right, 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.
Speaker 1 (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
(13:11):
to cost, what is that going to do? And if
I was a kid, it'd make me be like, I'm fine,
I'm asking.
Speaker 2 (13:17):
M Yeah, they're trying to protect the parent.
Speaker 1 (13:21):
They already don't want to be a burden. They're already
feeling bad about everything, right, So then our system kind
of creates this identified patient and you know, we see
where that goes. So intersectionalizing 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
(13:41):
front of us.
Speaker 2 (13:42):
Right.
Speaker 1 (13:43):
It's really cool because when we see beyond the externalized behaviors,
beyond the diagnoses, right, 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. Yeah, sometimes these are their greatest strengths.
Speaker 2 (14:02):
Yeah, 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 aged six, barely six, and
(14:22):
then around age ten, 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. You know, he's looking
at me in the eye and he's having this two
way conversation, and it was so difficult, but I just
(14:48):
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,
(15:14):
and it just gave me goosebumps. That was years ago.
He's twenty two 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
(15:34):
agree with that diagnosis. Your kid just had a conversation
with me. It was reciprocal. He's looking me in the eye.
I'm like, he learned how to do these things right.
And not every kid on the spectrum has those specific traits.
But how do we as parents helped to navigate that
(15:55):
sort of thing when our kids are hiding in plain sight,
when they are falling through the cracks? How do we
add uvocate with the system, with the pediatrician or the
GP or whoever we are trying to get some help
from Yeah.
Speaker 1 (16:09):
You know, it always makes to laugh when people would
say like, well, they don't look autistic. I was saying, like,
what does an autistic person look like? Yeah? Right? And
I always talk about the diagnostic DSM, and you know
the flaws about it, right, And number one, a lot
of the diagnosis was created off voice. Secondly, it's external symptoms,
(16:30):
those things that you can see. Yeah, TREDHD is going
to be in attention, fidgetiness, so forth, right, But that's
not necessarily what ADHD is. It's actually hyper focus, issues
with the execut to functioning. Yep, you know autism, lack
of empathy right, where they don't have social skills. It's
actually the opposite, where they have hyper empathy. They just
(16:51):
don't know what they heck to do. Yes, and there's
this double empathy problem yep, right, yep, you know, lack
of emotions versus like lexithymia and problems with inter reception. Right.
So all of these things, if they're invisible, you're not
going to see them right in this diagnostic. This aid
OS tests is side. You know, do some diagnostics. It's
the gold standard, right.
Speaker 2 (17:11):
Yep, The gold standard said no to me.
Speaker 1 (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. Yeah, 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,
(17:35):
they people please, they say the right things there on paper,
they're finding 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 a soccer They're great at soccer.
Do they have friends? They have a small group of friends, right,
all of these things, but they're melting down, right, And
(17:59):
then in the years go on, is like, you know, yeah,
they are a pleasure to have in class, but they're quiet,
or maybe they're a little anxious so they're super hard
on themselves. Yeah, or they're very serious. Sometimes they're like
a little quirky, right, And at home parents have seen
the complete opposite. They're seeing these huge meltdowns, these full
stop shutdowns, right, like constant exhaustion, endless physical complaints and ailments,
(18:25):
belly aches, headaches, right, mood swings, fighting with their siblings,
and there's this dissonance of like, how does this not match?
Speaker 2 (18:33):
Right?
Speaker 1 (18:35):
And it's confusing. They look like they're coping from the
you know, 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 wits
(18:57):
end with them. They feel like they don't fit in
and everyone else seems to be having an easier time
than then, and somehow they pull it off, but they're exhausted. So,
you know, these kids are especially these subtle ones, right,
like the ones like your boy, the ones that aren't
picked up by the ados. Right, these kids become total
black belts at camouflaging, experts at it. And it's what
(19:22):
a heck of a skill to have in our pocket, right,
And to a degree, all of us do a degree
of masking. And you go to the bank and we say, hi,
how are you? We go to right, Yeah, but it's
like it's not all the time, and we're not masking
at home in our bedrooms, right. And I think sometimes
masking is so pervasive that a lot of these kids
don't even know whose they are. So when we talk
(19:43):
about kids invisible and plaining sight, this is what I'm
talking about.
Speaker 2 (19:47):
Right.
Speaker 1 (19:47):
They're working over time to survive in systems that weren't
designed for them. It's really like being left handed in
the right handed world. Okay, you can be left handed,
but you're going to live in a right handed world,
right handed, right handed desks, no golf clubs, right, yeah,
figure it out. But there's nothing inherently wrong with being
left handed.
Speaker 2 (20:07):
Yeah, yeah, it's just one way to be Yep. I
talked with an ADHD coach, Jeff Copper 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 and exercise where they have to
(20:30):
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
(20:51):
me want to like run into a corner and crawl
underneath something and hide like it would be a disaster.
I love that analogy. I think it's really powerful for
parents and educators, and.
Speaker 1 (21:03):
How many people would be like, Bonica, stop spilling everything.
Why is it that hard.
Speaker 2 (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?
Speaker 1 (21:14):
Right?
Speaker 2 (21:19):
If you've been listening for a while, you're familiar with
my back to school prep Week, where I set neurodivergent
kids and their families up for success right when the
school year starts. 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. Let's be real, all
(21:40):
those acronyms alone I EP five, O four, FBA, BP
can be overwhelming. 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 real lifeistic advocacy tools. I
(22:02):
listened to Opportunity Gap and I was blown away. Julian
Savadra and his guests break it down in simple terms,
highlight where to focus your energy, and give you simple
steps to advocate efficiently. So if you've ever walked out
of a school meeting wondering what just happened, go search
(22:23):
for Opportunity Gap in your podcast app. That's Opportunity Gap.
Can we talk a little bit about misdiagnosis because I
think that is really common for neurodivergent people in general,
(22:47):
like it happens to adults too. How do we navigate
that as parents? I talk a lot about really following
your gut if you really believe, like I did with
autism with my kid, 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,
(23:11):
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. 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 gonna be honest.
I don't see it, but I'm going to do all
the evaluations. I'm gonna have all the conversations with him,
(23:35):
and in the end there he was hiding in play
insight 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,
(23:59):
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 right 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.
Speaker 1 (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 here, they're never gonna have to
reinvent the story. This is it, right? 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
(24:40):
to go to the testing. You're like, I can't pay
for this. We just had it with this person, and
I'm like, I know you did right. But when people
come into my office in primary care, how do you
even get us to refer right? And if we've heard
genurology or psych how do we know that it's gonna
be caught right?
Speaker 2 (25:01):
Yeah, the outcome you want.
Speaker 1 (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, right, Like,
I honestly think most clinicians will know when something feels off.
But if we don't have a category of diagnosis, these
limited categories to put it in, where do you put it?
(25:26):
And there are diagnostic codes for being bitten by an orca,
walking into a lamp post I'm not kidding. W twenty
two point two is walking into a lamppost, is burned
due to water skis being on fire, but there is
no diagnostic code for twice exceptionality.
Speaker 2 (25:44):
Yep.
Speaker 1 (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 labeling a depression or sensory processing differences, convergence and
sufficiencies with their eyes, trauma and things like chronic misattunement,
(26:06):
medical trauma, family systems, and 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, right, so we miss it.
(26:27):
And you know, the downfalls is that when we have
limited recognition and understanding, we therefore have limited access to
support in services, right, and then opportunities to expand research
to improve care systems. So it makes sense why these
subtle kids are just kind of like the forgotten ones.
And again it's not a fell young provider. I think
(26:51):
as more information comes out and as we're like, it's
going to become the failure of the provider, right, 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. Right, 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.
(27:13):
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?
Speaker 2 (27:26):
Mm hmm. 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.
Speaker 1 (27:40):
That's the issue with these external symptoms, right, And oftentimes
do they think about like an anxiety, like it makes
sense when people are depressed, Maybe they have damn good
reasons to be depressed and it's not a pathology, right right.
Bormante talks about substance abuse in me says, you know,
like why is it that when we send people to rehab,
oftentimes people detalks will get off drugs, they discharged and
(28:04):
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. Right.
This is how I kind of see these neurodive virgin
kids and families is like like aba stuff, Like we're
just putting band aids on things like who have to
get to the root. And humans have two needs number
one attachment belonging. Number two authenticity being who you are.
(28:27):
Attachment will always trump authenticity, but no one should ever
have to sacrifice one for the other. And this is
what we ask nerdi virgin kids to do. Yes, and
when they mask, we say, you are doing so great,
You're such a pleasure to have around. Yeah, maybe autism
and maybe these external symptoms are just stress symptoms and
(28:51):
in the right habitat, they don't.
Speaker 2 (28:53):
Exist exactly, Yeah, exactly. When we create neuroaffirming and 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. Yeah, we have definitely a
fix it mentality, and part of that just comes from
(29:15):
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
(29:36):
them fit in that system, that right handed world. We're
trying to push them into it. Again, we have to
look at the whole picture. And you know a lot
of times when I talk to parents and maybe kids
resistant to diagnosis, maybe a parent's resistant to diagnosius, then
we can step back and we can say, Okay, the
label doesn't matter so much. It's important to access services,
(29:59):
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
(30:21):
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 the cyst all these systems
that are so rigid. But the bottom line is, if
my kid's going to school every day and I can't
(30:43):
remember turning 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 add that to the diagnosis when it's the right diagnosis.
(31:04):
But it's not covering all the things. As you're talking about.
I get people all the time you ask me like,
how do I get dysgraphia diagnosed? Well, it's not really
in the DSM, but you know, 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.
You know, the DSM really needs an update. It is
(31:28):
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
(31:49):
more things that we could talk about. We've already reached
our thirty minute mark, where parents can often find the
time to squeeze it in or some times 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.
But will you let everybody know before we go, what
(32:13):
is one step they could take right now? If I,
you know, myself twenty years ago, 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
(32:37):
in a direction of getting answers or growth or helping
my kid?
Speaker 1 (32:42):
Yeah, I mean I think slow down. Yes, And you know,
we kind of catastrophze and we get all this and
I think this is the fix it mentality? Right? Is
it so uncomfortable that we want to make these problems
go away because it's uncomfortable in our bodies? Is uncomfortable
to know our kids are feeling this way vice versa. Right,
But we can just start observing without judgment, like get curious, notice,
(33:06):
like what are the things that cause them to be dysregulated? Yeah,
what are the things that seem to calm them down? Right?
What's happening around those moments? What are the sensory environments?
Like right with the demands and experiences they're facing. What
always think about. You know, my son was learning about
like different habitats in school and it occurred to me that, like, well,
(33:28):
if there was an Arctic fox, it would not thrive
in a desert habitat.
Speaker 2 (33:32):
That feels obvious, Yeah, and.
Speaker 1 (33:35):
Is that not what's happening to our nerdi vidging kids
when we send 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 recentall accommodations. But parents, slow down,
(33:58):
trust your gut, you know you're kid.
Speaker 2 (34:01):
I love that. Yeah, that's slowed down as.
Speaker 1 (34:03):
Everything find other parents, find other people. There's groups on
Facebook that are like autistic adults that parents can ask
questions too and they get answers within twenty four hours.
And like also as communities, so podcasts like this.
Speaker 2 (34:17):
Yeah, 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
I 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.
(34:39):
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. Like, plus, you just miss the good
stuff when you're so focused on everything that's hard. Yeah,
(35:00):
there's no room for joy. You have locked it out.
You have to make room for that, you have to
notice it, So slowing down I love that advice.
Speaker 1 (35:10):
Talk 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. Yeah, like play, eat on the floor,
these sorts of things like get in their level and
be attuned and that's what's healing.
Speaker 2 (35:27):
Love that. Let everybody know where they can find GEO
onlines that can connect and maybe learn more from you.
Speaker 1 (35:33):
Yeah, Intersection rising dot com And I do have a
small Instagram, but I don't really use it, so quite
not that useful. But if you send the message today,
I will see it and I can get back to you.
But intersection rising dot com and you'll find my contact
information there.
Speaker 2 (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 Parenting ADHD and autism dot com
slash three two six for episode three. Thank you so much,
Monica for this perspective, this reminder, this permission that we
can trust our gut as a parent, that we may
(36:11):
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,
(36:32):
and I'm so thankful that we got to connect and
share this with everybody listening.
Speaker 1 (36:39):
Thank you.
Speaker 2 (36:40):
I'll see everybody next time. Take good care. I see you.
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 step. The Regulated Kids Project is
(37:02):
here with the tools, coaching, and community to help you
raise a more regulated, resilient child. Get more info at
regulated kids dot com.
The saddest part for me is that these kids oftentimes
have no idea how awesome they are, how hard they're trying.
They just know that their parents are at their wits
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.
Speaker 2 (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
(00:42):
if you want more support, join our free community at
hub dot beautifully complex dot life. Hi everyone, welcome back
to your beautifully complex. I am excited to have with
me Monica Gardi Jews, and we are going to talk
about subtle presentations of neurodivergence, how sometimes we experience misdiagnoses
(01:09):
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?
Speaker 1 (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, right, 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, further training, became a pediatric and adolescent
(01:47):
mental health consultant specialist, and through the Trauma Research Foundation,
I currently am clinical faculty at UCLA School of Nursing
teach about Trauma, neudiversity and their pediatrics in the owner
of Intersection Rising, which I'll tell you about. But more importantly,
I am a mom of a really, really fantastic little
boy who has no idea how much better I am
(02:10):
because of him. And I think, you know, for parents
listening to this, we're all listening to be better, right.
Speaker 2 (02:16):
Yeah.
Speaker 1 (02:16):
So, Intersection Rising is a coaching consulting company that I made,
and it was developed 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 way steep in my own healing journey, working with
(02:38):
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 healthful provider? And are
my healthcare providers actually helping me? And honestly, sometimes sure,
but a lot of times not really right. So my
(02:59):
next question really became was 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. And you know, our healthcare systems will talk
more about but they really weren't created for nerdivergent minds
(03:20):
in 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.
Speaker 2 (03:31):
Yeah.
Speaker 1 (03:31):
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 at the
very least people would feel heard or seen and believed
by me, and that in itself is such a crucial
element and healing.
Speaker 2 (03:47):
Yes, yeah, it's so much of what we focus on
the podcast and the work idea, like we all just
deserve to feel seen, heard and understood, and when we do,
it changes so much. It changes our nervous it changes
our confidence, it changes the way we show up for others.
It's it's really that crucial piece that I think is
(04:08):
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.
Speaker 1 (04:25):
I work in a private practice and in these big
hospital systems, after those visits, right, patients get called with
survey how was your visit? Did your doctor listen to
did blah blah blah blah? Right? Well, I once had
this review they received from a patient's parent saying that
I hated doctors. Right. I was like, man, because one,
that's untrue, right yeah, Two what the heck? And this
(04:48):
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 healthcare they are people too, right, Yeah,
the training they had to go through to get there,
to get a in front of you, it's evidence that
they aren't uncarrying people. Right, Nurses and doctors, they're some
of the best humans I know, and they're burnt out, frustrated,
(05:09):
wrestling poster syndrome and debt in the same way as
everyone else. Right, These systems were designed for efficiency, more portly,
they were designed by people who aren't healthcare providers themselves.
So our health system is really functioning as it was
designed to do. Right, And two things can be true
(05:30):
at the same time. There can be parts of healthcare
and 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 with talking about like martialized
populations in these subtle presentations that we're talking about today.
Speaker 2 (05:51):
Yeah, 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.
(06:14):
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.
Speaker 1 (06:29):
And that's kind of what my life goal is, right
and I 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. Right,
And I think our healthcare system, especially when we're talking
about neurodiversity and all the overlap that comes with it,
(06:52):
you know, ler Standlos syndrome, pots, dysautonomia, chronic fatigue, COVID,
long halo, all these things. Like, we're starting to see
our system break, right, and we can't just sweep that
under the rug, right, So this is kind of where
we need systems podcasts like this, and you know, people
in academic people that are willing to swim upstream and say, hey,
(07:14):
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, right, And I'm super
super grateful for the good reviews, the bad reviews. You know,
my colleagues and you know patients who entertain my you know,
(07:35):
info dumps and the people who are also interested in
this and trying to make a difference, So it feels
less alone.
Speaker 2 (07:41):
Yeah. 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
(08:05):
you and Ice are of people who are nerd divergent,
kids who are nerdivergent, Like they need that flexibility as
much as we do.
Speaker 1 (08:15):
It's a scientific method, right, Like you try something, it
doesn't work, it's not a failure, right Yep. I read
a quote recently it was like, if you knew you
had to fail thirty times to become successful, how fast
would you try to fail?
Speaker 2 (08:28):
Yeah?
Speaker 1 (08:29):
So intersection rising is it's really my baby, right, 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 there's studies out
of internal medicine that show that ninety five percent of
referrals to psych never make it not surprised access the
(08:52):
executive functioning. These people are depressed and we're telling me
to call the number of the back of the card. There
needs to be a bridge here more between clinician and patient, right,
parent and child schools. Like life doesn't happen in silos, right,
And the way medicine is set up is really in
these little boxes. Go see neuro gosi psych. But we
(09:14):
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?
Speaker 2 (09:24):
Mm hmm. That's often the parent, and you know, as
a parent of a nerdive, urgent 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.
Speaker 1 (09:47):
Parent and so many times, I think even with like
the knowledge, right, Like, I mean, think about how difficult
it is as you working in this and knowing only people,
Like how hard it is to advocate for children. Yeah,
imagine not speaking the language, Imagine not having access to healthcare,
(10:08):
Imagine not having a car, right yep, 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 EPs, all of it. Yeah, right, And
so that's a lot to put on parents that I'm
so grateful for the parents that are there and are
(10:30):
able to do it. But we sign up to be,
you know, pediatric expectitioners or pediatricians, Like we're signing up
not just to take care of the child, but to
take care of the child's family.
Speaker 2 (10:41):
So needed, that perspective is so needed, And I think
we see it more in pediatrics that we do in
general medicine, at least in my experience. But there's still
a lot of disconnect between specialties. Right, And 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
(11:03):
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, there's so many
people who don't have access. And I think, you know,
mental health care access is woefully underfunded. It's not covered
with insurance a lot, or it's not covered enough. You know,
(11:25):
my own family, I'm self employed, so I have to
get my own health care insurance. I've done that for
twenty 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,
(11:48):
and therapy, you know, just this last year, I couldn't
afford the premium anymore because it was insane, 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
(12:08):
or the other, right, And if you don't have insurance,
my gosh, there are very few people who can afford
healthcare without insurance at all 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
(12:31):
have to think about protecting our energy. Right, 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.
Speaker 1 (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
(13:11):
to cost, what is that going to do? And if
I was a kid, it'd make me be like, I'm fine,
I'm asking.
Speaker 2 (13:17):
M Yeah, they're trying to protect the parent.
Speaker 1 (13:21):
They already don't want to be a burden. They're already
feeling bad about everything, right, So then our system kind
of creates this identified patient and you know, we see
where that goes. So intersectionalizing 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
(13:41):
front of us.
Speaker 2 (13:42):
Right.
Speaker 1 (13:43):
It's really cool because when we see beyond the externalized behaviors,
beyond the diagnoses, right, 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. Yeah, sometimes these are their greatest strengths.
Speaker 2 (14:02):
Yeah, 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 aged six, barely six, and
(14:22):
then around age ten, 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. You know, he's looking
at me in the eye and he's having this two
way conversation, and it was so difficult, but I just
(14:48):
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,
(15:14):
and it just gave me goosebumps. That was years ago.
He's twenty two 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
(15:34):
agree with that diagnosis. Your kid just had a conversation
with me. It was reciprocal. He's looking me in the eye.
I'm like, he learned how to do these things right.
And not every kid on the spectrum has those specific traits.
But how do we as parents helped to navigate that
(15:55):
sort of thing when our kids are hiding in plain sight,
when they are falling through the cracks? How do we
add uvocate with the system, with the pediatrician or the
GP or whoever we are trying to get some help
from Yeah.
Speaker 1 (16:09):
You know, it always makes to laugh when people would
say like, well, they don't look autistic. I was saying, like,
what does an autistic person look like? Yeah? Right? And
I always talk about the diagnostic DSM, and you know
the flaws about it, right, And number one, a lot
of the diagnosis was created off voice. Secondly, it's external symptoms,
(16:30):
those things that you can see. Yeah, TREDHD is going
to be in attention, fidgetiness, so forth, right, But that's
not necessarily what ADHD is. It's actually hyper focus, issues
with the execut to functioning. Yep, you know autism, lack
of empathy right, where they don't have social skills. It's
actually the opposite, where they have hyper empathy. They just
(16:51):
don't know what they heck to do. Yes, and there's
this double empathy problem yep, right, yep, you know, lack
of emotions versus like lexithymia and problems with inter reception. Right.
So all of these things, if they're invisible, you're not
going to see them right in this diagnostic. This aid
OS tests is side. You know, do some diagnostics. It's
the gold standard, right.
Speaker 2 (17:11):
Yep, The gold standard said no to me.
Speaker 1 (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. Yeah, 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,
(17:35):
they people please, they say the right things there on paper,
they're finding 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 a soccer They're great at soccer.
Do they have friends? They have a small group of friends, right,
all of these things, but they're melting down, right, And
(17:59):
then in the years go on, is like, you know, yeah,
they are a pleasure to have in class, but they're quiet,
or maybe they're a little anxious so they're super hard
on themselves. Yeah, or they're very serious. Sometimes they're like
a little quirky, right, And at home parents have seen
the complete opposite. They're seeing these huge meltdowns, these full
stop shutdowns, right, like constant exhaustion, endless physical complaints and ailments,
(18:25):
belly aches, headaches, right, mood swings, fighting with their siblings,
and there's this dissonance of like, how does this not match?
Speaker 2 (18:33):
Right?
Speaker 1 (18:35):
And it's confusing. They look like they're coping from the
you know, 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 wits
(18:57):
end with them. They feel like they don't fit in
and everyone else seems to be having an easier time
than then, and somehow they pull it off, but they're exhausted. So,
you know, these kids are especially these subtle ones, right,
like the ones like your boy, the ones that aren't
picked up by the ados. Right, these kids become total
black belts at camouflaging, experts at it. And it's what
(19:22):
a heck of a skill to have in our pocket, right,
And to a degree, all of us do a degree
of masking. And you go to the bank and we say, hi,
how are you? We go to right, Yeah, but it's
like it's not all the time, and we're not masking
at home in our bedrooms, right. And I think sometimes
masking is so pervasive that a lot of these kids
don't even know whose they are. So when we talk
(19:43):
about kids invisible and plaining sight, this is what I'm
talking about.
Speaker 2 (19:47):
Right.
Speaker 1 (19:47):
They're working over time to survive in systems that weren't
designed for them. It's really like being left handed in
the right handed world. Okay, you can be left handed,
but you're going to live in a right handed world,
right handed, right handed desks, no golf clubs, right, yeah,
figure it out. But there's nothing inherently wrong with being
left handed.
Speaker 2 (20:07):
Yeah, yeah, it's just one way to be Yep. I
talked with an ADHD coach, Jeff Copper 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 and exercise where they have to
(20:30):
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
(20:51):
me want to like run into a corner and crawl
underneath something and hide like it would be a disaster.
I love that analogy. I think it's really powerful for
parents and educators, and.
Speaker 1 (21:03):
How many people would be like, Bonica, stop spilling everything.
Why is it that hard.
Speaker 2 (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?
Speaker 1 (21:14):
Right?
Speaker 2 (21:19):
If you've been listening for a while, you're familiar with
my back to school prep Week, where I set neurodivergent
kids and their families up for success right when the
school year starts. 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. Let's be real, all
(21:40):
those acronyms alone I EP five, O four, FBA, BP
can be overwhelming. 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 real lifeistic advocacy tools. I
(22:02):
listened to Opportunity Gap and I was blown away. Julian
Savadra and his guests break it down in simple terms,
highlight where to focus your energy, and give you simple
steps to advocate efficiently. So if you've ever walked out
of a school meeting wondering what just happened, go search
(22:23):
for Opportunity Gap in your podcast app. That's Opportunity Gap.
Can we talk a little bit about misdiagnosis because I
think that is really common for neurodivergent people in general,
(22:47):
like it happens to adults too. How do we navigate
that as parents? I talk a lot about really following
your gut if you really believe, like I did with
autism with my kid, 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,
(23:11):
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. 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 gonna be honest.
I don't see it, but I'm going to do all
the evaluations. I'm gonna have all the conversations with him,
(23:35):
and in the end there he was hiding in play
insight 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,
(23:59):
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 right 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.
Speaker 1 (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 here, they're never gonna have to
reinvent the story. This is it, right? 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
(24:40):
to go to the testing. You're like, I can't pay
for this. We just had it with this person, and
I'm like, I know you did right. But when people
come into my office in primary care, how do you
even get us to refer right? And if we've heard
genurology or psych how do we know that it's gonna
be caught right?
Speaker 2 (25:01):
Yeah, the outcome you want.
Speaker 1 (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, right, Like,
I honestly think most clinicians will know when something feels off.
But if we don't have a category of diagnosis, these
limited categories to put it in, where do you put it?
(25:26):
And there are diagnostic codes for being bitten by an orca,
walking into a lamp post I'm not kidding. W twenty
two point two is walking into a lamppost, is burned
due to water skis being on fire, but there is
no diagnostic code for twice exceptionality.
Speaker 2 (25:44):
Yep.
Speaker 1 (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 labeling a depression or sensory processing differences, convergence and
sufficiencies with their eyes, trauma and things like chronic misattunement,
(26:06):
medical trauma, family systems, and 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, right, so we miss it.
(26:27):
And you know, the downfalls is that when we have
limited recognition and understanding, we therefore have limited access to
support in services, right, and then opportunities to expand research
to improve care systems. So it makes sense why these
subtle kids are just kind of like the forgotten ones.
And again it's not a fell young provider. I think
(26:51):
as more information comes out and as we're like, it's
going to become the failure of the provider, right, 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. Right, 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.
(27:13):
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?
Speaker 2 (27:26):
Mm hmm. 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.
Speaker 1 (27:40):
That's the issue with these external symptoms, right, And oftentimes
do they think about like an anxiety, like it makes
sense when people are depressed, Maybe they have damn good
reasons to be depressed and it's not a pathology, right right.
Bormante talks about substance abuse in me says, you know,
like why is it that when we send people to rehab,
oftentimes people detalks will get off drugs, they discharged and
(28:04):
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. Right.
This is how I kind of see these neurodive virgin
kids and families is like like aba stuff, Like we're
just putting band aids on things like who have to
get to the root. And humans have two needs number
one attachment belonging. Number two authenticity being who you are.
(28:27):
Attachment will always trump authenticity, but no one should ever
have to sacrifice one for the other. And this is
what we ask nerdi virgin kids to do. Yes, and
when they mask, we say, you are doing so great,
You're such a pleasure to have around. Yeah, maybe autism
and maybe these external symptoms are just stress symptoms and
(28:51):
in the right habitat, they don't.
Speaker 2 (28:53):
Exist exactly, Yeah, exactly. When we create neuroaffirming and 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. Yeah, we have definitely a
fix it mentality, and part of that just comes from
(29:15):
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
(29:36):
them fit in that system, that right handed world. We're
trying to push them into it. Again, we have to
look at the whole picture. And you know a lot
of times when I talk to parents and maybe kids
resistant to diagnosis, maybe a parent's resistant to diagnosius, then
we can step back and we can say, Okay, the
label doesn't matter so much. It's important to access services,
(29:59):
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
(30:21):
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 the cyst all these systems
that are so rigid. But the bottom line is, if
my kid's going to school every day and I can't
(30:43):
remember turning 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 add that to the diagnosis when it's the right diagnosis.
(31:04):
But it's not covering all the things. As you're talking about.
I get people all the time you ask me like,
how do I get dysgraphia diagnosed? Well, it's not really
in the DSM, but you know, 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.
You know, the DSM really needs an update. It is
(31:28):
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
(31:49):
more things that we could talk about. We've already reached
our thirty minute mark, where parents can often find the
time to squeeze it in or some times 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.
But will you let everybody know before we go, what
(32:13):
is one step they could take right now? If I,
you know, myself twenty years ago, 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
(32:37):
in a direction of getting answers or growth or helping
my kid?
Speaker 1 (32:42):
Yeah, I mean I think slow down. Yes, And you know,
we kind of catastrophze and we get all this and
I think this is the fix it mentality? Right? Is
it so uncomfortable that we want to make these problems
go away because it's uncomfortable in our bodies? Is uncomfortable
to know our kids are feeling this way vice versa. Right,
But we can just start observing without judgment, like get curious, notice,
(33:06):
like what are the things that cause them to be dysregulated? Yeah,
what are the things that seem to calm them down? Right?
What's happening around those moments? What are the sensory environments?
Like right with the demands and experiences they're facing. What
always think about. You know, my son was learning about
like different habitats in school and it occurred to me that, like, well,
(33:28):
if there was an Arctic fox, it would not thrive
in a desert habitat.
Speaker 2 (33:32):
That feels obvious, Yeah, and.
Speaker 1 (33:35):
Is that not what's happening to our nerdi vidging kids
when we send 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 recentall accommodations. But parents, slow down,
(33:58):
trust your gut, you know you're kid.
Speaker 2 (34:01):
I love that. Yeah, that's slowed down as.
Speaker 1 (34:03):
Everything find other parents, find other people. There's groups on
Facebook that are like autistic adults that parents can ask
questions too and they get answers within twenty four hours.
And like also as communities, so podcasts like this.
Speaker 2 (34:17):
Yeah, 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
I 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.
(34:39):
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. Like, plus, you just miss the good
stuff when you're so focused on everything that's hard. Yeah,
(35:00):
there's no room for joy. You have locked it out.
You have to make room for that, you have to
notice it, So slowing down I love that advice.
Speaker 1 (35:10):
Talk 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. Yeah, like play, eat on the floor,
these sorts of things like get in their level and
be attuned and that's what's healing.
Speaker 2 (35:27):
Love that. Let everybody know where they can find GEO
onlines that can connect and maybe learn more from you.
Speaker 1 (35:33):
Yeah, Intersection rising dot com And I do have a
small Instagram, but I don't really use it, so quite
not that useful. But if you send the message today,
I will see it and I can get back to you.
But intersection rising dot com and you'll find my contact
information there.
Speaker 2 (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 Parenting ADHD and autism dot com
slash three two six for episode three. Thank you so much,
Monica for this perspective, this reminder, this permission that we
can trust our gut as a parent, that we may
(36:11):
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,
(36:32):
and I'm so thankful that we got to connect and
share this with everybody listening.
Speaker 1 (36:39):
Thank you.
Speaker 2 (36:40):
I'll see everybody next time. Take good care. I see you.
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 step. The Regulated Kids Project is
(37:02):
here with the tools, coaching, and community to help you
raise a more regulated, resilient child. Get more info at
regulated kids dot com.
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