March 7, 2025 • 44 mins
Parenting a neurodivergent child comes with unique challenges, especially when executive function skills—like planning, organisation, and impulse control—are difficult for them.
In this episode, Professor Adam Guastella, a leading expert at the University of Sydney, provides expert insights on how parents can advocate for their children in the education system, the latest neuroscience research, the role of executive function in development, and how to provide supportive environments that foster growth and confidence in children.
Tune in for practical advice, strategies for success, and a refreshing sense of hope for families facing these challenges.
QUOTE OF THE EPISODE:
“It's not a battle of will, it's a battle of systems.” – Professor Adam Guastella
KEY INSIGHTS FOR PARENTS:
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Autism is not about intelligence; it's about different ways of thinking and interacting with the world.
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What is executive function, and why does it matter?
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The connection between ADHD, autism, and executive function challenges.
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A strength-based approach helps kids feel empowered rather than ashamed of their challenges.
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How parents can advocate for their child at school—even without a diagnosis.
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The importance of structure, and practical strategies and accommodations for helping kids succeed and thrive.
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New research on the cerebellum and its role in neurodevelopment.
RESOURCES MENTIONED:
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University of Sydney—Professor Adam Guastella’s research
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Various professionals, such as paediatricians, psychologists, and speech therapists, who can provide advocacy and support.
ACTION STEPS FOR PARENTS:
- Build a support team of medical and educational professionals.
- Stay persistent in seeking the right resources, even if it’s challenging.
- Highlight your child’s strengths and provide structured support.
- Educate yourself on neurodevelopmental conditions and executive function.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
What is autism? What is executive function? What is a disorder?
Are we supposed to be talking about disorders when it
comes to conversations around neuro developmental challenges, neurodiversity, neurodivergence. I
am so excited for my conversation today because it is
going to answer so many questions that you have about autism,
(00:27):
adhd neurodiversity more generally. Oh my goodness, let's get into it.
Hello and welcome to the Happy Families Podcast. My name
is doctor Justin Coulson. This is where we give you
real parenting solutions every day on Australia's most downloaded parenting podcast.
I wish Kylie could be with me today, Unfortunately she
has other things that are going on with our six daughders.
(00:48):
Therefore it's me, but I'm joined by somebody who has
taken the world by storm academically over the last couple
of months with a brand new paper that was published
all about autism and executive function. If neurodiversity and neurodivergence
are common discussion points in your home, this is one
you don't want to miss. Professor Adam Guastella is a
(01:11):
leading clinical psychologist and researcher at the Brain and Mind
Center at the very prestigious University of Sydney, one of
those Sandstone Universities, groundbreaking work for decades now in research.
He's also featured as the expert on the ABCTV show
Employable Me, which was about helping autistic people find gainful
(01:33):
and valuable and meaningful and purposeful employment. He's working on
providing support and tools for families with neurodevelopmental needs. He's
a dad to three boys and he joins me now
from his office at the University of Sydney. Adam, I'm
so excited that you're on the Happy Families podcast today.
Thank you for being with me.
Speaker 2 (01:52):
Hi Justin, I'm so glad to be here. Adam.
Speaker 1 (01:55):
Let's start with a conversation about you study autism.
Speaker 2 (02:01):
Well, you know, I trained as a psychologist, and for
anyone that's trained as a psychologist, they'll know that they
barely got any training in this autism field. You know,
I think my memory is I got two hours of
a lecture on fairly basic information about autism and other
neurodevelopmental conditions. And so what happened for me is I
actually started an anxiety doing a lot of different anxiety treatments,
(02:25):
and we used to get people come into the anxiety
programs and they'd benefit from some things, but they really
weren't benefiting from a lot of parts of the program.
What's going on here? I started realizing there was different
needs for this group of people that were coming in,
and we started understanding that they were people that were
meeting the criteria for autism. Actually they weren't often undiagnosed.
(02:48):
They might add so they're becoming in really significant problems
and so you know, from there, well, we've got to
support this group in a different way. And there was
nothing available. There was no evidence for what works. There
was no health service providing support, and so that's where
it really started. I went, well, actually, we've got to
develop the evidence for how to provide support, and that
(03:11):
started back in two thousand and eight and we've been
continuing ever since.
Speaker 1 (03:16):
What is autism?
Speaker 2 (03:17):
Well, it's a good question. It's a controversial one on
mine ad there's a breadth in the way that we
define autism, but the crux of it is really a
difficulty in navigating social situations in terms of the core
criteria and then having a systematizing or really black and
white way of thinking about the world and getting stuck
in routines. That's sort of how the criteria is shaped
(03:39):
at the moment.
Speaker 1 (03:40):
Okay, so let me restate that I'm going to use
the term disorder. I know it's a provocative term, but
for just now, I use the term disorder. It's a
disordered way of engaging socially. It's a fixed and rigid
way of sticking with routines or demanding routine where it
doesn't exist. And sorry, there was a third element that
I that's just escaped me. What was the third element?
Speaker 2 (04:02):
It's the black and white. It's it's not what we
call concrete thinking. It's sort of like the seeing things
in quite rigid ways.
Speaker 1 (04:08):
Okay, you didn't mention anything about intellect cognitive capacity, and
this is another area that can be quite provocative. My
understanding is that there is no correlation between autism and
intellectual capacity. That it's very much about rigidity and thinking
and struggling in social situations.
Speaker 2 (04:28):
You said disordered ways of interacting social I know you're
being provocative, but that's where the debate is right, because
the debate is is it about they've got a disordered
way of interacting or that there's just a different way
of interacting that, if we can support or match, is
not really disordered, but just different. So that's an active
debate in the field right now. But to go back
(04:50):
to your actual question, think about it as a condition
that's associated with changes in learning and behavior, that affects
socialization and the way we interpret information in their world.
Speaker 1 (05:03):
The Oxford University Press describes a disorder as an illness
or condition that disrupts normal physical or mental functions. You've
highlighted this is a provocative thing to anyone who is
dealing with autism. And I say dealing with because there
is disruption socially, and there is disruption around that rigidity
of thinking. The affirmative approach, the affirmation approach is very
(05:29):
much where the conversation is right now. Why is this
so provocative? It seems to me. And granted I'm not
somebody who's been trained in it, and I also have
all the compassion and sympathy in the world here, so
I'm not trying to I'm really not trying to steal
the pot. I know anyone who's dealing with autism in
their families right now hating me, But I'm asking the
(05:49):
question because Grandpa Joe or Artie Cynthia at Christmas, they're
not thinking the way the mum who's grappling with this
is thinking. They're not thinking the way the person who's
leading the autism organization is thinking. They're saying, but you've
got a nine year old who has a condition that's
disrupting their normal physical or mental functions. They're saying, this
is a disorder.
Speaker 2 (06:10):
Right.
Speaker 1 (06:10):
So, as provocative as it is, I'm taking that side
because I want you to be able to explain why
this has turned into this big debate. Why is this
such a big debate.
Speaker 2 (06:20):
So I think it's important to acknowledge the history, and
the history is that we need funding mechanisms to provide
support in different you know, different governments rely on a
medical model to provide funding to a family for needs, right,
and so that is often under the label of a disorder.
And that's where private health insurance and like all comes
(06:42):
into it. And so the term disorder is actually very
very important for accessing health care. The history in this
space really is that it's not all about changing the child,
which the term disorder sort of insinuates that it's something
we have to fix in a child to get optimal
health outcomes. And the answer is certainly not that right.
(07:04):
It's about actually going what in the environment needs to
change to make the environment easier to learn from, What
in the environment needs to change to encourage more cohesive
and more supportive interactions with people and better friendships, and
also what in the environment needs to change so that
people can succeed in achieving the goals they want to achieve.
(07:28):
And so the focus is very much on helping the individual,
but also recognizing that the environment can change in a
huge way as well. And related to that, when people
have done studies and change environments to be more what
we term inclusive to support children and adults with autism
(07:50):
and other neurodevelopmental needs, those environments are really good for everyone,
you know, all of a sudden, we start seeing improvements
in learning outcomes for all the kids in the class,
not just the kids that have a neurodevelopmental condition. So
then the question becomes, are we dealing with poor environments
that are unnecessarily difficult to learn from mixed with differences
(08:14):
in learning that make things result in problems? And I'll
give you I'll give you some really practical examples in
our clinic, we regularly deal with young adults that come
to us they unable to find work, that they might
be failing at university, that they might be really unhappy
in their jobs, and we'll explore what's going on for
them in the university system. We know that it can
(08:37):
be really sporadic in terms of the amount of work
that's required and self driven, and a lot of the
assessments can be really hard to navigate for people, and
so it's not hard for an assessment to get missed
here or there. You know, that's a minute they start
failing at one thing that it starts piling up, but
it's before they know it, they're starting to fail at
all their subjects.
Speaker 1 (08:55):
Busy anxiety that you were talking about before.
Speaker 2 (08:57):
And anxiety starts kicking in, depresion starts kicking in. And
so the system and the way that say learning about
how to complete a course at university doesn't suit or
it doesn't promote often successful outcomes for people. And so
we've taken some of these people that have reported really
poor outcomes and then put them or not they've won
(09:18):
jobs themselves, but put them into roles where supports exist
and where their needs are being met and that maybe
the structures are clearer, maybe the goals are more obvious,
maybe the tasks are more suited to what their skills are,
and what do we find. What we find frequently that
when you do that, people succeed, and succeed outrageously well.
(09:41):
So we've had people that have failed at university to
being in the top ten of early graduates in a
multinational company for the year and getting to meet the CEO.
Or people that were absolutely miserable because they got the
diagnosis of autism in the workplace, put them in the
back office and felt like that and they felt like
they were being mistreated, and they were to then becoming
(10:05):
the head of diversity inclusion in a major company or
getting a job in government representing the needs of people
in the NDIS. And the point is that it's not
necessarily that these people have a disorder that stops them
from being able to learn or being able to succeed.
But it's also about being able to match up what
(10:28):
their goals are with the environment so that they can
flourish and succeed in the future. And that's partly why
there's been a shift in narrative.
Speaker 1 (10:37):
Adam my sense is that what you've said is going
to give so many parents so much hope. I'm getting
goosebumps on my arms. Listen to what you're describing him.
Speaker 2 (10:46):
One of my sons has ADHD and when he was
in year two, the strategy the teacher applied for him
when he wasn't able to sit still and listen in
the class was to face a blank wall at the
back of the room while she taught. Right, So her
strategy was to get him out of the class, and
(11:08):
so he was being if you look less intruptive to
face a brick wall. The idea there is his being
disruptive and if he wants to learn, he needs to
sit in the class appropriately and face me appropriately. And
if he doesn't do that, he's face in the brick wall. Right,
how much does he learn when when he does that?
(11:28):
What does he learn about his role in the classroom
when that happens to him, What does it will he
learn about his worth as a child? Because he's got
the problem And so you know what we quickly did
when that started to unfold was to get him into
an environment where the right supports were put in place
that you know, he was the distractions in the classroom
(11:50):
were reduced. That perhaps he was given you know, appropriate
support and learning support on a regular basis to be
able to take in the information and the anxiety in
the classroom reduced. So I guess what I'm just that's
sort of the point of why we don't necessarily just
talk about disorders.
Speaker 1 (12:08):
As you describe that. It sits really neatly with the
psychological theory that underpins most of my research, most of
my work, which is that when children's basic psychological needs
are supported, they thrive. That is, when they feel competent
and capable, when they have good relationships and they have
a sense of control. And your son's experience much like
my youngest daughter similar kinds of challenges. We homeschool her
(12:33):
now because we just found that the school environment was
not working and where fortunately in the position where that
was an option for us, there was just too much
disruption in her life, relationship with the teacher, relationship with
other students, explosive, not working, not feeling competent because I always
getting in trouble, and also being controlled so much. I
love the way that you've mapped that out and the
(12:53):
hope that's there for parents. Last provocation before we step
into what I think parents are really going to what
I know about as it applies to their own children.
I hear this with some consistency, and it's certainly something
that I've thought of as well. I went to school
in the nineteen eighties, graduated in the early nineteen nineties.
(13:15):
My experience with school was that I don't I don't
ever remember ever coming across kids with autism. Maybe ADHD
because we just didn't talk about it back then, but
I don't remember ever coming across kids with these neurodevelopmental
needs conditions, disorders, whatever word people feel most comfortable or
(13:38):
uncomfortable with. I try to be sensitive here. I just
don't remember anyone with autism in the eighties and nineties.
Has something changed? And if so, what because because a
lot of a lot of the arties and uncles and
grandparents are looking at parents today and saying, well, it's
dodgy parenting, it's faulty, you're the issue here.
Speaker 2 (13:57):
Yeah, And I think that is back to this idea
that there's a problem that needs to be fixed and
someone's caused that problem. And I think that's really unhelpful
because you know, we know that development of delays and conditions,
it's not about parenting in general. And so you know,
(14:20):
there's a very clear reason why. When I started training
as a psychologist in the late nineties early two thousands,
the rate of autism was about one in one hundred
and something one hundred and fifty. So that means in
the average year level there might be one person that
was being diagnosed. Those kids back then would never have
(14:41):
been diagnosed because the criteria didn't meet that criteria. A
lot of the kids back then needed to have intellectual disability,
quite severe intelectrivisibility to be diagnosed. And secondly, a lot
of those kids I've reflected on that myself and I
can think about a lot of the kids in my
year level that probably would have met criteria for autism
but never received an assessment, never received any support. And
(15:04):
it's fine to go, well, okay, well, if they didn't
receive support back then, why should we give them support now?
Why not just let them be whatever they be? And
the answer to that is pretty simple. It's that when
you don't provide the right support, when you don't give
people the needs that they have, then you get poor outcomes.
We know that autistic people and people with ADHD have
(15:27):
enormously high rates of bullying and schools enormously high rates.
They are victims over and over and over again, and
it's a consistent story of trauma and dislike of schools
in regards to their peers for a lot of young people.
And so we also know that under achievement, particularly in
(15:50):
those later years, is very very common in comparison to
their cognitive ability. When you do an IQ test or
the related things to IQ, you may say this is
the time of HSC score or whatever school you know
you would predict, and we know that people on the
spectrum will often get much lower scores than that. And
it's not about their learning capacity of their intelligence. It's
(16:12):
about what supports they had at school to be able
to learn and the types of things I said earlier.
And so if we're happy for people not to succeed
and fulfill their potential, if we're happy for people to
be excluded and to be bullied in our schools, and
we're happy for people to underperform and then to have
(16:33):
what is often lifelong self esteem issues and difficulties then
moving on into other fields, then yes we should leave
things the way they are. But if we want a
different system with greater awareness, a greater knowledge of what
differences people have, what needs they have. We should develop
schools and learning opportunities that give people the best chance
(16:53):
at succeeding in life. And I think when granddad's talking
about it, Granddad's talking about a medical model that goes,
there's something wrong with your child, you've got to fix it.
We're talking about a model now which is all about
we just want the best doubt coomes for your children.
You know, we want to make sure they've got the
right supports in place. And if we do it for
(17:15):
the kids that really need it, I bet you the
other kids are also going to benefit. And that's the
model that we're talking about.
Speaker 1 (17:21):
Professor Gustela is at the University of Sydney and joins
me on the Happy Families podcast today. My sense a
metaphor has sprung to mind as you've been describing this.
I could listen to your talk all day, and that
is that if you get a seed and put it
in the soil and the seed doesn't grow, do you
(17:43):
blame the seed? And most gardeners would say, well, no,
you don't blame the seed. You look at the environment.
How much sunlight's there, what's the temperature, what's the nutritional
quality of the soil, how much water has been put
into the soil. In other words, you adapt the environment
to help the seed to grow. Would that metaphor suit
where you're going here?
Speaker 2 (18:02):
That metaphor absolutely does. And I think it's even more
charged if you say, would you blame a three year
old for anything? Would you blame a five year old
for all the things? You know, we sometimes do blame
them for I mean, these are children that need support.
Speaker 1 (18:19):
Adam. A few months ago, you published a paper that
blew up. It caught my attention. It's pretty academic, it's
pretty full on, but as simply as we can, I
want to dissect a couple of things from it and
talk specifically about this thing called executive function. My very
brief summary of the paper is that you've identified that
(18:40):
across neuro developmental needs, across the great neurodiversity that exists
on the planet with young people, one of the factors
that brings them together is an issue with executive function.
That is, executive function for orartistic kids, children with ADHD diagnosis,
(19:02):
people who meet the criteria in the DSM for these
neurodevelopmental challenges and needs. Executive function seems to be right
at the core of it.
Speaker 2 (19:12):
Now.
Speaker 1 (19:12):
I know that that's a massive oversimplification of your research,
but assuming that that's sufficient for us to move forward,
can we just talk a bit about what executive function
is and why parents should care about it in their kids.
Speaker 2 (19:25):
Families will spend a long time seeking a diagnosis sake
so they can get the right care. Well that's the point.
Speaker 1 (19:33):
Yeah, I want to get the care, want to get
the funding, want to know what's going on because the
environment's not working for that's that's right.
Speaker 2 (19:40):
However, to get a diagnosis in Australia right now, it's
probably going to cost you at least three thousand dollars
or it's.
Speaker 1 (19:46):
Probably going to and take two years and take.
Speaker 2 (19:49):
More than two years, right and then if you get
the autism diagnosis, you'll get a list of recommendations based
on the autism strategy and based on blah blah blah blah,
and and you'll get autism specific services. If your child
gets a Turet's diagnosis, they're not going to get anything
like the sorts of services you get for autism, and
(20:10):
they're going to get a much smaller set of recommendations.
Speaker 1 (20:13):
And they get nothing for ADHD.
Speaker 2 (20:15):
You've got these silos that have been generated. Now the
big problem we have in this field is why have
we generated these silos? Why? I mean, we look at
autism and at least eighty percent of kids with autism
have another neurodevelopmental condition like ADHD. We know the overlaps
about sixty percent, right, so we can just say most
kids with autism have ADHD. A lot of kids with autism,
(20:37):
We'll also have turets, a lot of kids with autism.
We'll also have language and learning disorders like dyslexia. So
like there's a lot of overlap, but we don't talk
about the overlap. We just talk about an individual diagnosis
and families spend a lot of money getting that one diagnosis.
So that's the background, and what we wanted to do
was go, well, hang on, let's just take something like
executive function. Is there actually anything really unique about executive
(21:02):
function delays it's specific to autism versus other developmental conditions,
And what do we mean by executive function? Well, it's
executive function skills are some of the most important skills
for development. So it's about planning. It's about manipulating something
in your mind and then trying to come up with
a solution. It's about inhibiting your impulsive responses so that
(21:26):
you know, you don't just do what your emotions tell
you to do. You do things that are actually good
for yourself and for your family. So it's these sort
of higher level skills that regulate both problem solving and
impulse control and what we call cognitive flexibility, those sorts
of things. And so what we did is we looked
(21:48):
at every single study that compared two or more developmental
conditions since nineteen eighty, since autism first came into the manual,
and other disorders have come in and been around as well.
And what we found, in a nutshell was the differences
were so miniscule that it just wasn't worth considering as
(22:10):
a you know, the differences were largely there were no differences,
and so we should be thinking about executive function, delays
and needs in a trends diagnostic wade a way which
affects all kids with your own developmental conditions. Doesn't matter
what the diagnosis is. Now, why is that important? Let
me go back to the first bit, which is parents
are spending at least two years waiting for a diagnoses
(22:32):
of autism. Forget about that, I mean, don't forget about it.
We need we still need to do that, right, But
how about when you first got concerned, you start doing
some executive function assessments and other things that we think
you can do, and start putting supports in place straight away,
and the things that might actually help schools to manage,
you know, rather than you know, trying to split things
up with all the different diagnoses. What are the fundamental
(22:54):
things that we need to do to support kids and families?
Speaker 1 (22:56):
Just trying to score the importance of this research that
you've done at them. It was published in Nature Human Behavior,
which is one of the most prestigious clinical journals globally
and for people who are not familiar with the term,
this was a meta analysis. So you've reviewed, as you said,
all of the papers that have been written. In the end,
(23:17):
you've synthesized more than one hundred and eighty studies in
this area into one condensed package. The overall picture says this,
and again my far too short summary is the overall
situation is that these neuro developmental conditions are very much
(23:39):
about executive function, the ability to inhibit, the ability to plan,
the ability to hold onto one thing in your mind
while working on another thing, the ability to switch tasks.
I mean, you think about ADHD and the monotasking it
kin gets hyper fixated and then the teacher says, no,
I want you to stop. It's time to do that
(24:00):
over there, and the child just goes berserk because like, no, no, no, no,
it took me an hour to get here, and now
I'm here and I'm in this and you want me
to change, like it's so hard for them. And your
research essentially found that executive function challenges appearance seems somewhat
consistent across, well almost entirely consistent across the different near
developmental conditions. So here's my question for you. Does that mean?
(24:25):
I mean, I can imagine a parent who's sitting there going, well,
I got the autism diagnosis and I also got the
ADHD diagnosis. But does this essentially mean that ADHD and
autism are in some ways the same thing? Like, what
does this mean for a parent who's trying to understand
the child's diagnosis.
Speaker 2 (24:39):
We're getting a better understanding that there are many common
factors underpind All neurodevelopmental conditions. Say yes, that there's going
to be lot If your child has autism, not only
are they greater risk of getting a much greater, much,
much greater risk of getting of being diagnosed with ADHD,
but they're also going to have needs that are very
similar to those with ad HD, even if they don't
(25:01):
meet the diagnostic criteria. The fundamental thing is there are
going to be lots of fundamental needs and cut across
all neurodevelopmental conditions that we need to start to support
in a more integrated way. But at a high level,
I'm not saying that autism and ADHD are the same thing.
There are things that differentiate, and there are important things
that separate them out. But I don't think our science
(25:25):
is sophisticated enough right now to be able to say
this is what's common, and these are the really unique things,
and this is what really matters. That's you know, what
really matters for what we need to do to those
kids in terms of providing support to give them the
best opportunity. And I think it's going to be largely
a lot of the stuff we do at an intervention
(25:46):
level is like trans diagnostic sort of stuff. It's all
about getting structures and supports in place, and you know,
learning environments in the right way, getting them potentially the
right medications. It's stuff that doesn't need necessarily need to
be silent for a specific diagnosis.
Speaker 1 (26:13):
Professor Gustela is at the University of Sydney and joins
me on the Happy Families podcast today. You've brought up
medication provocative question in my social media reels lately, a
couple of things have come up. I think it has
a lot to do with the fact that RFK Jr.
May be coming into the United States to look after
health and so on. And I've had a few reels
(26:35):
come up that have been really pushing hard at the
idea that autism and this has been around for such
a long time. Autism is called cause by vaccines, and
specifically those reels where somebody will say, I've got twins.
They were vaccinated. One of them started to change their
behavior a short time later, the other one didn't. One
(26:56):
of them has an autism diagnosis, the other one doesn't.
The question is twofold. Therefore, what can we say about
vaccines and other environmental factors and neurodevelopmental conditions like autism
and Secondly, where does autism come from?
Speaker 2 (27:14):
Yeah? Okay, So the first question is pretty easy to answer,
and it's easy to answer because there's been a lot
of scientific studies conducted on the role of vaccines and
potentially causing autism, and even to the point where studies
have looked at the specific properties of the contents of
(27:35):
the vaccines, such as mercury, to try and understand if
there's any link associated with the specific properties of vaccines
and the development of autism. Okay, now there's one thing
we can't get away from. The one thing we can't
get away from is autism is often first identified at
(27:56):
the age of two, and vaccines that we're talking about
are often given to children at the age of two
because that's what that's the timeline that they're given. Right.
So there is this incidental, if you like, interaction where
parents will often report their child receiving a vaccine and
(28:17):
at some point in time after that noticing autism symptoms,
and that's sort of that relationship between the two is
what's partly generated a lot of the worry for parents.
But all these scientific studies have shown very very clearly
that none of the ingredients are associated with the development
of autism, and like there's been such an so many
(28:42):
different ways, whether you look at countries that didn't have
vaccines and then introduced vaccines and they've looked at the
autism rate, or you've had laboratory studies where they've massively
increased the ingredients of those specific ingredients to see how
it affects development in animals. For those studies, we know
(29:03):
that there's just no relationship there. And we can say
that with a really strong belief because the science around this.
Everyone's been so worried about it and there's been so
much hys theory about it for so long, the science
around is really quite robust. The most likely reason that
we have these constant conversations is because of a the
(29:26):
association and then B because there is a lot of
vaccines and we saw it with the COVID vaccines. They
often get caught up into narratives around government control or
big farmer and so there's a lot of suspicion around
this idea of control and vaccine. So I think it's
just going to be an internal conversation that goes on
(29:48):
while people remain suspicious about these things.
Speaker 1 (29:52):
So where do you think that it does come from.
Speaker 2 (29:54):
The heritability of it is the most significant factor, so
that means largely genetics. We know also, just going back
to my trends diagnostic pedal, is that the genetics may
not necessarily be specific to autism, but if you are
autistic or your parents are autistic, that makes you more
(30:16):
susceptible to a range of neurodevelopmental conditions. But it's certainly
genetics play the biggest factor. The rest of it is associational,
and we think that, you know, the best science at
the moment is suggesting, well, maybe there are things that
can say you've got vulnerabilities there. Maybe there are things
(30:37):
that can push you over the edge of that vulnerability
to then lead you into develop the diagnosis. But you
have to have that significant vulnerability there, and then there's
a lot of debate around what those things could be.
Whether nutrition plays a part, whether living and being around
pollution might play a part. You know, stress might play
a role. There's a whole range of factors which we
(30:59):
can't they're really hard to pull apart causily, but we
think if they do play a role, it is about
pushing development over a threshold where there was that genetic
vulnerability to begin with, and I don't think there's any
evidence that autism would develop without that genetic vulnerability in
the first place.
Speaker 1 (31:17):
Following through on this executive function theme, what specific strategies
can parents use to support a child with executive function
challenges at home?
Speaker 2 (31:29):
Life is busy for many many families, and it can
get chaotic very very quickly. And so for people without
executive function delays, they might be able to navigate all
the shifting needs, the different demands you know, reading and
just give an example, reading one thing and listening to another,
(31:50):
remembering and recalling information, need to make the bed, need
to pack my lunch, so many different things going on once.
Some people can navigate all that and get through. But
if you want to make life simple, structure, structure, structure, Yeah,
so kids, particularly with executive days, really really better effort
(32:13):
from lots of structure, So be really directive, have reminders,
lots of tip sheets, and along with that, as hard
as it can be, the more emotional people get, the
more anxious people get, the more executive function becomes even harder.
So you've just got it's a calm environment, lots of structure,
and then what the evidence shows is then supports around learning,
(32:35):
So they might need not so much because they're not
non intelligent, because often it's not about intelligence. Maybe it's
about making sense of the information and structuring it. How
do I go, I have a lot of kids, how
do I even start an assignment? You know, Like I know,
I can almost envisage what the assignment's got to look like,
but I just don't know what I need to do
(32:56):
to start it and put it together. So it's often
having a tutor or one or a parent to really
sit down and assist them just to put the things
together and develop the habits and skills that enable them
to get things together. Tutors often help, and the literature
shows that they could often make a huge difference around
(33:18):
again not about knowledge, but around organization and structuring things
and providing reminders. And if you find your kids are
like leaving everything at the last minute, then you know,
having someone that can help them start earlier and also
to identify what's going on anxiety wise. When they do
start early, there's probably a whole range of things going
on there.
Speaker 1 (33:39):
When you say structure, I start smiling to myself because
given the hereditary nature of many of the near development
or conditions we've discussed today.
Speaker 3 (33:46):
Now, if you've got a parent who's got ADHD, absolutely
they're going I want to help my kid to have structure,
but I don't know what that is myself, Like, it
can be extremely challenging for them.
Speaker 1 (33:57):
Yeah, let's step into the school text for a sec. Yeah,
what should parents tell teachers about executive function challenges? Like
how does a parent effectively advocate for their child to
get the support that they need at school, especially when
there is no diagnosis yet or there's funding challenges or
(34:17):
I mean, in our case, we just withdrew our child
from school because we found it was it was just
too hard in spite of our best efforts to advocate
for our child.
Speaker 2 (34:26):
Yeah. Well, you know, there's never a right way here,
and this is an incredibly charged environment, and we know
that teachers and schools are, you know, particularly the public
systems are under enormous pressure to deliver. So we recognize
the complexity of the question you're about You've asked, right,
but at the end of the day, the kids should
be at the center of it, and the kids whose
(34:47):
needs really matter, we want them to succeed the most.
And so to answer the question specifically, I think parents
may be the best advocate, but also getting a system
of support around the child world is really important. So
you know, I think having a pediatrician or a psychologist
or a depending on the needs that an I T
(35:08):
or speech you that can advocate alongside you is really
really useful because not only do you bring a huge
uh you know, detailed knowledge of your child, but you
also bring a degree that where you need someone who's
independent to communicate. So I think getting getting that team
(35:30):
of support around you is really important. Secondly, teachers, you know,
are they the best place to start? There's often learning
support teams, and you know they may be the best
if you're like educated in the space, yes, and then
then may be the teacher in combination with them. And
(35:52):
then also I guess really practical stuff that if you
find stuff works at home for your child, advocating really
practical stuff to the teacher is useful. As you know,
teachers have a big job to do, so you know,
being aware of what their capacity is is important as well.
(36:13):
And then you know, this is a moving space. So
one thing I've often said to parents, if the school
is one that doesn't meet the needs of your child,
don't be afraid to shift schools. And it may not
necessarily be about the school. It may be about the
teacher at that school that is just not the right fit.
(36:33):
Don't be afraid to go to different places to get
the support that your child needs because and of course
it could be about the peer groups. So you know,
if it really isn't working and you're finding yourself hitting
up your head up against the brick wall, you don
can get a lot of gain by getting into different schools.
Speaker 1 (36:53):
One more question on executive function. How does a parent
explain to a child in a way that builds their
confidence rather than creating shame and a feeling that they're
not enough. What's going on? Like, how do you sit
down with a child and say, we've done these tests
and euutistic or we've done these tests and we think
ADHD is the reason that these challenges exist you have
(37:17):
in your developmental condition.
Speaker 2 (37:19):
Yes, So I think that what parents need to do
really is the first thing is we're not talking about
a lot of deep stuff when it comes to executive function.
It's kids needing to structure and support and you know,
make their bed and get dressed, and if they're really
struggling with it, they'll know they're struggling with it, and
(37:39):
just being supportive and providing the steps and the structure
that's needed for them to do it, but being open
that maybe they actually need that structure and support because
it teaches them not that they have a deficit, but
actually if they're struggling with something, maybe there's supports they
can reach out for, or maybe things that they can
(37:59):
do to structure their own activities to do to help themselves.
So I think that the first step is really to
make sure that you're doing it in a supportive way,
but you are providing different steps to help kids complete
the tasks. The second thing is, you know, whenever you
give information, always give it in a really positive way.
(38:19):
And you can remember also all the strengths that you
recognize in your child. And we know that caregivers. We've
done lots of studies that have shown caregivers know lots
of strengths about their child and they talk about them,
but when they come to sort of the problem, they'll
often not only talk about the problem. So just make
(38:40):
sure you bring in some of that strength based stuff
and make sure that they feel valued and heard when
you're talking about it. But don't be afraid to highlight
that maybe kids that they need to do certain things
to succeed, and that'll teach them how to navigate things
in the future.
Speaker 1 (38:56):
A technical question for you that is getting back into
some cutting edge research. There's been some fascinating studies done
using rat models that have caught my attention that suggest
that the cerebellum. So for people who are not familiar
with the cerebellum, it's kind of top of the brain
stem back of your brain, right at the very back
(39:16):
at the bottom of your brain, the back of your head.
And what it does is it helps It's attached to
about eighty percent of the neurons in our brain, so
it helps us with breathing and digestion and all of
the automatic processes that keep us alive. But it's also
associated with automating behaviors like understanding social cues and remembering
(39:37):
physical actions like how to pick something up like a
pen or a pencil and hold it correctly. So this
research that's caught my attention suggests that since the cerebellum
is so involved in automating certain behaviors properly, it potentially
also explains challenges in ADHD autism, dyslexia, dyspraxia with ADHD.
(40:00):
Automating in terms of long term planning with autism, nothing
automating in terms of reading social cues with dyslexia. Nothing
automating in terms of remembering what that letter is symbolic
of or represents in terms of dyspraxia, not remembering how
to hold the pencil. Are you familiar with the research
and what do you think it might mean?
Speaker 2 (40:21):
Well, you know, I think that general idea is pervades
a lot of the science around autism and neurodevelopmental conditions
in general. And you're talking about cerebellum focused research, but
you can also put that into a front alone example
where you've got goal development and set shifting and switching attention.
(40:43):
And if kids aren't paying attention enough, or they aren't
able to coordinate the information enough, or they're feeling overwhelmed,
then they cannot consolidate that information for learning and they
won't be able to recall that information when they need it.
And so that general idea or model is, you know,
(41:04):
how we consider a lot of neurodevelopmental conditions to I
guess change the way that kids learn and where the
supports are needed in terms of providing that structure and
support to be able to sort of help with consolidation
and retrieval.
Speaker 1 (41:20):
I love that. So essentially, the executive function the work
that you've been focused on. That's the top front of
the brain, right, the prefront of course, that's right. This
is this is down the other end of the brain.
But you're suggesting that if one of them is no online,
the other one can't function well, and so that works.
Speaker 2 (41:36):
That's right. So I think we in the nineties we
thought about, you know, brain systems as different discrete components, right,
so that we had this part of the brain is
only responsible for.
Speaker 1 (41:47):
Memory left brain or on right brain.
Speaker 2 (41:49):
Yeah, And I think the big shift over the last
twenty years has been acknowledging that different brain systems, well,
they all interact, and you know, if there's usually around coordination,
this is why executive function is so important. If there
are issues around the coordination of brain systems, it has
(42:10):
a broad effect across It's a connectivity issue rather than
just one specific thing not doing it what it should do.
Speaker 1 (42:17):
Adam, you're a mountain of knowledge. The conversation has been fascinating,
it's been practical, but it's also been wonderfully insightful, and
my sense is that for parents who are grappling with
the challenges that come with raising children who experience neurodevelopmental conditions,
my sense is that you've been a ray of hope
(42:38):
and like I said, just just a mountain of knowledge
and information. So grateful for your time. You've been extremely
generous in what you've shared. Thank you for your input today.
Is there anything at all that you think that we've
either missed or that you'd just like to grab a
highlighter and scribble as hard as you can so that
parents really grab that one thing and hold on to it.
Speaker 2 (43:01):
The one thing that I would want parents to do
is to get this like to battle, to battle to
get the support they need. It's not we don't. Unfortunately,
our system is not easy to navigate. It's not like
getting your teeth cleaned. It's it's it's excuse my friendships
bloody hard and for parents, it's going to be a
(43:22):
long term battle at the moment until our system is better.
To get the support that your child and your family needs,
and to know that there are many many other families
in the same position as yourself, and to persist that that.
You know, I think it's it's about persistence and and
you know, for those parents that are doing that to
(43:43):
my hat's off to you because you're advocating for your
child and that's it's a really important thing. Adam.
Speaker 1 (43:50):
Really appreciate your time. Just hearing you say that, I'm
thinking of all all the emails and all the social
media messages that I see where parents are saying I'm
dying here. I'm just tearing my hair up. This is
so so hard. Really appreciate your compassion and the wonderful
work that you do and again your generosity.
Speaker 2 (44:06):
Today.
Speaker 1 (44:07):
We spent a lot of time talking about this today.
You have so many people and so many things that
are pressuring you for your time. So thank you for
helping us to get this message out today.
Speaker 2 (44:17):
Thanks Justin, It's been a pleasure. I've really enjoyed it.
Speaker 1 (44:19):
Professor Adam Guastella is at the University of Sydney and
doing incredible work advocating for the needs of children with
neurodevelopmental conditions, and he's joined me today on the Happy
Families podcast. The Happy Families Podcast is produced by Justin
Roland from Bridge Media. If you would like more information
and resources that can make your family happier. Please visit
(44:40):
us at happy families dot com dot a you, and
we'll link to as many things as we can that
Adam's done in our show notes to give you that
extra support
What is autism? What is executive function? What is a disorder?
Are we supposed to be talking about disorders when it
comes to conversations around neuro developmental challenges, neurodiversity, neurodivergence. I
am so excited for my conversation today because it is
going to answer so many questions that you have about autism,
(00:27):
adhd neurodiversity more generally. Oh my goodness, let's get into it.
Hello and welcome to the Happy Families Podcast. My name
is doctor Justin Coulson. This is where we give you
real parenting solutions every day on Australia's most downloaded parenting podcast.
I wish Kylie could be with me today, Unfortunately she
has other things that are going on with our six daughders.
(00:48):
Therefore it's me, but I'm joined by somebody who has
taken the world by storm academically over the last couple
of months with a brand new paper that was published
all about autism and executive function. If neurodiversity and neurodivergence
are common discussion points in your home, this is one
you don't want to miss. Professor Adam Guastella is a
(01:11):
leading clinical psychologist and researcher at the Brain and Mind
Center at the very prestigious University of Sydney, one of
those Sandstone Universities, groundbreaking work for decades now in research.
He's also featured as the expert on the ABCTV show
Employable Me, which was about helping autistic people find gainful
(01:33):
and valuable and meaningful and purposeful employment. He's working on
providing support and tools for families with neurodevelopmental needs. He's
a dad to three boys and he joins me now
from his office at the University of Sydney. Adam, I'm
so excited that you're on the Happy Families podcast today.
Thank you for being with me.
Speaker 2 (01:52):
Hi Justin, I'm so glad to be here. Adam.
Speaker 1 (01:55):
Let's start with a conversation about you study autism.
Speaker 2 (02:01):
Well, you know, I trained as a psychologist, and for
anyone that's trained as a psychologist, they'll know that they
barely got any training in this autism field. You know,
I think my memory is I got two hours of
a lecture on fairly basic information about autism and other
neurodevelopmental conditions. And so what happened for me is I
actually started an anxiety doing a lot of different anxiety treatments,
(02:25):
and we used to get people come into the anxiety
programs and they'd benefit from some things, but they really
weren't benefiting from a lot of parts of the program.
What's going on here? I started realizing there was different
needs for this group of people that were coming in,
and we started understanding that they were people that were
meeting the criteria for autism. Actually they weren't often undiagnosed.
(02:48):
They might add so they're becoming in really significant problems
and so you know, from there, well, we've got to
support this group in a different way. And there was
nothing available. There was no evidence for what works. There
was no health service providing support, and so that's where
it really started. I went, well, actually, we've got to
develop the evidence for how to provide support, and that
(03:11):
started back in two thousand and eight and we've been
continuing ever since.
Speaker 1 (03:16):
What is autism?
Speaker 2 (03:17):
Well, it's a good question. It's a controversial one on
mine ad there's a breadth in the way that we
define autism, but the crux of it is really a
difficulty in navigating social situations in terms of the core
criteria and then having a systematizing or really black and
white way of thinking about the world and getting stuck
in routines. That's sort of how the criteria is shaped
(03:39):
at the moment.
Speaker 1 (03:40):
Okay, so let me restate that I'm going to use
the term disorder. I know it's a provocative term, but
for just now, I use the term disorder. It's a
disordered way of engaging socially. It's a fixed and rigid
way of sticking with routines or demanding routine where it
doesn't exist. And sorry, there was a third element that
I that's just escaped me. What was the third element?
Speaker 2 (04:02):
It's the black and white. It's it's not what we
call concrete thinking. It's sort of like the seeing things
in quite rigid ways.
Speaker 1 (04:08):
Okay, you didn't mention anything about intellect cognitive capacity, and
this is another area that can be quite provocative. My
understanding is that there is no correlation between autism and
intellectual capacity. That it's very much about rigidity and thinking
and struggling in social situations.
Speaker 2 (04:28):
You said disordered ways of interacting social I know you're
being provocative, but that's where the debate is right, because
the debate is is it about they've got a disordered
way of interacting or that there's just a different way
of interacting that, if we can support or match, is
not really disordered, but just different. So that's an active
debate in the field right now. But to go back
(04:50):
to your actual question, think about it as a condition
that's associated with changes in learning and behavior, that affects
socialization and the way we interpret information in their world.
Speaker 1 (05:03):
The Oxford University Press describes a disorder as an illness
or condition that disrupts normal physical or mental functions. You've
highlighted this is a provocative thing to anyone who is
dealing with autism. And I say dealing with because there
is disruption socially, and there is disruption around that rigidity
of thinking. The affirmative approach, the affirmation approach is very
(05:29):
much where the conversation is right now. Why is this
so provocative? It seems to me. And granted I'm not
somebody who's been trained in it, and I also have
all the compassion and sympathy in the world here, so
I'm not trying to I'm really not trying to steal
the pot. I know anyone who's dealing with autism in
their families right now hating me, But I'm asking the
(05:49):
question because Grandpa Joe or Artie Cynthia at Christmas, they're
not thinking the way the mum who's grappling with this
is thinking. They're not thinking the way the person who's
leading the autism organization is thinking. They're saying, but you've
got a nine year old who has a condition that's
disrupting their normal physical or mental functions. They're saying, this
is a disorder.
Speaker 2 (06:10):
Right.
Speaker 1 (06:10):
So, as provocative as it is, I'm taking that side
because I want you to be able to explain why
this has turned into this big debate. Why is this
such a big debate.
Speaker 2 (06:20):
So I think it's important to acknowledge the history, and
the history is that we need funding mechanisms to provide
support in different you know, different governments rely on a
medical model to provide funding to a family for needs, right,
and so that is often under the label of a disorder.
And that's where private health insurance and like all comes
(06:42):
into it. And so the term disorder is actually very
very important for accessing health care. The history in this
space really is that it's not all about changing the child,
which the term disorder sort of insinuates that it's something
we have to fix in a child to get optimal
health outcomes. And the answer is certainly not that right.
(07:04):
It's about actually going what in the environment needs to
change to make the environment easier to learn from, What
in the environment needs to change to encourage more cohesive
and more supportive interactions with people and better friendships, and
also what in the environment needs to change so that
people can succeed in achieving the goals they want to achieve.
(07:28):
And so the focus is very much on helping the individual,
but also recognizing that the environment can change in a
huge way as well. And related to that, when people
have done studies and change environments to be more what
we term inclusive to support children and adults with autism
(07:50):
and other neurodevelopmental needs, those environments are really good for everyone,
you know, all of a sudden, we start seeing improvements
in learning outcomes for all the kids in the class,
not just the kids that have a neurodevelopmental condition. So
then the question becomes, are we dealing with poor environments
that are unnecessarily difficult to learn from mixed with differences
(08:14):
in learning that make things result in problems? And I'll
give you I'll give you some really practical examples in
our clinic, we regularly deal with young adults that come
to us they unable to find work, that they might
be failing at university, that they might be really unhappy
in their jobs, and we'll explore what's going on for
them in the university system. We know that it can
(08:37):
be really sporadic in terms of the amount of work
that's required and self driven, and a lot of the
assessments can be really hard to navigate for people, and
so it's not hard for an assessment to get missed
here or there. You know, that's a minute they start
failing at one thing that it starts piling up, but
it's before they know it, they're starting to fail at
all their subjects.
Speaker 1 (08:55):
Busy anxiety that you were talking about before.
Speaker 2 (08:57):
And anxiety starts kicking in, depresion starts kicking in. And
so the system and the way that say learning about
how to complete a course at university doesn't suit or
it doesn't promote often successful outcomes for people. And so
we've taken some of these people that have reported really
poor outcomes and then put them or not they've won
(09:18):
jobs themselves, but put them into roles where supports exist
and where their needs are being met and that maybe
the structures are clearer, maybe the goals are more obvious,
maybe the tasks are more suited to what their skills are,
and what do we find. What we find frequently that
when you do that, people succeed, and succeed outrageously well.
(09:41):
So we've had people that have failed at university to
being in the top ten of early graduates in a
multinational company for the year and getting to meet the CEO.
Or people that were absolutely miserable because they got the
diagnosis of autism in the workplace, put them in the
back office and felt like that and they felt like
they were being mistreated, and they were to then becoming
(10:05):
the head of diversity inclusion in a major company or
getting a job in government representing the needs of people
in the NDIS. And the point is that it's not
necessarily that these people have a disorder that stops them
from being able to learn or being able to succeed.
But it's also about being able to match up what
(10:28):
their goals are with the environment so that they can
flourish and succeed in the future. And that's partly why
there's been a shift in narrative.
Speaker 1 (10:37):
Adam my sense is that what you've said is going
to give so many parents so much hope. I'm getting
goosebumps on my arms. Listen to what you're describing him.
Speaker 2 (10:46):
One of my sons has ADHD and when he was
in year two, the strategy the teacher applied for him
when he wasn't able to sit still and listen in
the class was to face a blank wall at the
back of the room while she taught. Right, So her
strategy was to get him out of the class, and
(11:08):
so he was being if you look less intruptive to
face a brick wall. The idea there is his being
disruptive and if he wants to learn, he needs to
sit in the class appropriately and face me appropriately. And
if he doesn't do that, he's face in the brick wall. Right,
how much does he learn when when he does that?
(11:28):
What does he learn about his role in the classroom
when that happens to him, What does it will he
learn about his worth as a child? Because he's got
the problem And so you know what we quickly did
when that started to unfold was to get him into
an environment where the right supports were put in place
that you know, he was the distractions in the classroom
(11:50):
were reduced. That perhaps he was given you know, appropriate
support and learning support on a regular basis to be
able to take in the information and the anxiety in
the classroom reduced. So I guess what I'm just that's
sort of the point of why we don't necessarily just
talk about disorders.
Speaker 1 (12:08):
As you describe that. It sits really neatly with the
psychological theory that underpins most of my research, most of
my work, which is that when children's basic psychological needs
are supported, they thrive. That is, when they feel competent
and capable, when they have good relationships and they have
a sense of control. And your son's experience much like
my youngest daughter similar kinds of challenges. We homeschool her
(12:33):
now because we just found that the school environment was
not working and where fortunately in the position where that
was an option for us, there was just too much
disruption in her life, relationship with the teacher, relationship with
other students, explosive, not working, not feeling competent because I always
getting in trouble, and also being controlled so much. I
love the way that you've mapped that out and the
(12:53):
hope that's there for parents. Last provocation before we step
into what I think parents are really going to what
I know about as it applies to their own children.
I hear this with some consistency, and it's certainly something
that I've thought of as well. I went to school
in the nineteen eighties, graduated in the early nineteen nineties.
(13:15):
My experience with school was that I don't I don't
ever remember ever coming across kids with autism. Maybe ADHD
because we just didn't talk about it back then, but
I don't remember ever coming across kids with these neurodevelopmental
needs conditions, disorders, whatever word people feel most comfortable or
(13:38):
uncomfortable with. I try to be sensitive here. I just
don't remember anyone with autism in the eighties and nineties.
Has something changed? And if so, what because because a
lot of a lot of the arties and uncles and
grandparents are looking at parents today and saying, well, it's
dodgy parenting, it's faulty, you're the issue here.
Speaker 2 (13:57):
Yeah, And I think that is back to this idea
that there's a problem that needs to be fixed and
someone's caused that problem. And I think that's really unhelpful
because you know, we know that development of delays and conditions,
it's not about parenting in general. And so you know,
(14:20):
there's a very clear reason why. When I started training
as a psychologist in the late nineties early two thousands,
the rate of autism was about one in one hundred
and something one hundred and fifty. So that means in
the average year level there might be one person that
was being diagnosed. Those kids back then would never have
(14:41):
been diagnosed because the criteria didn't meet that criteria. A
lot of the kids back then needed to have intellectual disability,
quite severe intelectrivisibility to be diagnosed. And secondly, a lot
of those kids I've reflected on that myself and I
can think about a lot of the kids in my
year level that probably would have met criteria for autism
but never received an assessment, never received any support. And
(15:04):
it's fine to go, well, okay, well, if they didn't
receive support back then, why should we give them support now?
Why not just let them be whatever they be? And
the answer to that is pretty simple. It's that when
you don't provide the right support, when you don't give
people the needs that they have, then you get poor outcomes.
We know that autistic people and people with ADHD have
(15:27):
enormously high rates of bullying and schools enormously high rates.
They are victims over and over and over again, and
it's a consistent story of trauma and dislike of schools
in regards to their peers for a lot of young people.
And so we also know that under achievement, particularly in
(15:50):
those later years, is very very common in comparison to
their cognitive ability. When you do an IQ test or
the related things to IQ, you may say this is
the time of HSC score or whatever school you know
you would predict, and we know that people on the
spectrum will often get much lower scores than that. And
it's not about their learning capacity of their intelligence. It's
(16:12):
about what supports they had at school to be able
to learn and the types of things I said earlier.
And so if we're happy for people not to succeed
and fulfill their potential, if we're happy for people to
be excluded and to be bullied in our schools, and
we're happy for people to underperform and then to have
(16:33):
what is often lifelong self esteem issues and difficulties then
moving on into other fields, then yes we should leave
things the way they are. But if we want a
different system with greater awareness, a greater knowledge of what
differences people have, what needs they have. We should develop
schools and learning opportunities that give people the best chance
(16:53):
at succeeding in life. And I think when granddad's talking
about it, Granddad's talking about a medical model that goes,
there's something wrong with your child, you've got to fix it.
We're talking about a model now which is all about
we just want the best doubt coomes for your children.
You know, we want to make sure they've got the
right supports in place. And if we do it for
(17:15):
the kids that really need it, I bet you the
other kids are also going to benefit. And that's the
model that we're talking about.
Speaker 1 (17:21):
Professor Gustela is at the University of Sydney and joins
me on the Happy Families podcast today. My sense a
metaphor has sprung to mind as you've been describing this.
I could listen to your talk all day, and that
is that if you get a seed and put it
in the soil and the seed doesn't grow, do you
(17:43):
blame the seed? And most gardeners would say, well, no,
you don't blame the seed. You look at the environment.
How much sunlight's there, what's the temperature, what's the nutritional
quality of the soil, how much water has been put
into the soil. In other words, you adapt the environment
to help the seed to grow. Would that metaphor suit
where you're going here?
Speaker 2 (18:02):
That metaphor absolutely does. And I think it's even more
charged if you say, would you blame a three year
old for anything? Would you blame a five year old
for all the things? You know, we sometimes do blame
them for I mean, these are children that need support.
Speaker 1 (18:19):
Adam. A few months ago, you published a paper that
blew up. It caught my attention. It's pretty academic, it's
pretty full on, but as simply as we can, I
want to dissect a couple of things from it and
talk specifically about this thing called executive function. My very
brief summary of the paper is that you've identified that
(18:40):
across neuro developmental needs, across the great neurodiversity that exists
on the planet with young people, one of the factors
that brings them together is an issue with executive function.
That is, executive function for orartistic kids, children with ADHD diagnosis,
(19:02):
people who meet the criteria in the DSM for these
neurodevelopmental challenges and needs. Executive function seems to be right
at the core of it.
Speaker 2 (19:12):
Now.
Speaker 1 (19:12):
I know that that's a massive oversimplification of your research,
but assuming that that's sufficient for us to move forward,
can we just talk a bit about what executive function
is and why parents should care about it in their kids.
Speaker 2 (19:25):
Families will spend a long time seeking a diagnosis sake
so they can get the right care. Well that's the point.
Speaker 1 (19:33):
Yeah, I want to get the care, want to get
the funding, want to know what's going on because the
environment's not working for that's that's right.
Speaker 2 (19:40):
However, to get a diagnosis in Australia right now, it's
probably going to cost you at least three thousand dollars
or it's.
Speaker 1 (19:46):
Probably going to and take two years and take.
Speaker 2 (19:49):
More than two years, right and then if you get
the autism diagnosis, you'll get a list of recommendations based
on the autism strategy and based on blah blah blah blah,
and and you'll get autism specific services. If your child
gets a Turet's diagnosis, they're not going to get anything
like the sorts of services you get for autism, and
(20:10):
they're going to get a much smaller set of recommendations.
Speaker 1 (20:13):
And they get nothing for ADHD.
Speaker 2 (20:15):
You've got these silos that have been generated. Now the
big problem we have in this field is why have
we generated these silos? Why? I mean, we look at
autism and at least eighty percent of kids with autism
have another neurodevelopmental condition like ADHD. We know the overlaps
about sixty percent, right, so we can just say most
kids with autism have ADHD. A lot of kids with autism,
(20:37):
We'll also have turets, a lot of kids with autism.
We'll also have language and learning disorders like dyslexia. So
like there's a lot of overlap, but we don't talk
about the overlap. We just talk about an individual diagnosis
and families spend a lot of money getting that one diagnosis.
So that's the background, and what we wanted to do
was go, well, hang on, let's just take something like
executive function. Is there actually anything really unique about executive
(21:02):
function delays it's specific to autism versus other developmental conditions,
And what do we mean by executive function? Well, it's
executive function skills are some of the most important skills
for development. So it's about planning. It's about manipulating something
in your mind and then trying to come up with
a solution. It's about inhibiting your impulsive responses so that
(21:26):
you know, you don't just do what your emotions tell
you to do. You do things that are actually good
for yourself and for your family. So it's these sort
of higher level skills that regulate both problem solving and
impulse control and what we call cognitive flexibility, those sorts
of things. And so what we did is we looked
(21:48):
at every single study that compared two or more developmental
conditions since nineteen eighty, since autism first came into the manual,
and other disorders have come in and been around as well.
And what we found, in a nutshell was the differences
were so miniscule that it just wasn't worth considering as
(22:10):
a you know, the differences were largely there were no differences,
and so we should be thinking about executive function, delays
and needs in a trends diagnostic wade a way which
affects all kids with your own developmental conditions. Doesn't matter
what the diagnosis is. Now, why is that important? Let
me go back to the first bit, which is parents
are spending at least two years waiting for a diagnoses
(22:32):
of autism. Forget about that, I mean, don't forget about it.
We need we still need to do that, right, But
how about when you first got concerned, you start doing
some executive function assessments and other things that we think
you can do, and start putting supports in place straight away,
and the things that might actually help schools to manage,
you know, rather than you know, trying to split things
up with all the different diagnoses. What are the fundamental
(22:54):
things that we need to do to support kids and families?
Speaker 1 (22:56):
Just trying to score the importance of this research that
you've done at them. It was published in Nature Human Behavior,
which is one of the most prestigious clinical journals globally
and for people who are not familiar with the term,
this was a meta analysis. So you've reviewed, as you said,
all of the papers that have been written. In the end,
(23:17):
you've synthesized more than one hundred and eighty studies in
this area into one condensed package. The overall picture says this,
and again my far too short summary is the overall
situation is that these neuro developmental conditions are very much
(23:39):
about executive function, the ability to inhibit, the ability to plan,
the ability to hold onto one thing in your mind
while working on another thing, the ability to switch tasks.
I mean, you think about ADHD and the monotasking it
kin gets hyper fixated and then the teacher says, no,
I want you to stop. It's time to do that
(24:00):
over there, and the child just goes berserk because like, no, no, no, no,
it took me an hour to get here, and now
I'm here and I'm in this and you want me
to change, like it's so hard for them. And your
research essentially found that executive function challenges appearance seems somewhat
consistent across, well almost entirely consistent across the different near
developmental conditions. So here's my question for you. Does that mean?
(24:25):
I mean, I can imagine a parent who's sitting there going, well,
I got the autism diagnosis and I also got the
ADHD diagnosis. But does this essentially mean that ADHD and
autism are in some ways the same thing? Like, what
does this mean for a parent who's trying to understand
the child's diagnosis.
Speaker 2 (24:39):
We're getting a better understanding that there are many common
factors underpind All neurodevelopmental conditions. Say yes, that there's going
to be lot If your child has autism, not only
are they greater risk of getting a much greater, much,
much greater risk of getting of being diagnosed with ADHD,
but they're also going to have needs that are very
similar to those with ad HD, even if they don't
(25:01):
meet the diagnostic criteria. The fundamental thing is there are
going to be lots of fundamental needs and cut across
all neurodevelopmental conditions that we need to start to support
in a more integrated way. But at a high level,
I'm not saying that autism and ADHD are the same thing.
There are things that differentiate, and there are important things
that separate them out. But I don't think our science
(25:25):
is sophisticated enough right now to be able to say
this is what's common, and these are the really unique things,
and this is what really matters. That's you know, what
really matters for what we need to do to those
kids in terms of providing support to give them the
best opportunity. And I think it's going to be largely
a lot of the stuff we do at an intervention
(25:46):
level is like trans diagnostic sort of stuff. It's all
about getting structures and supports in place, and you know,
learning environments in the right way, getting them potentially the
right medications. It's stuff that doesn't need necessarily need to
be silent for a specific diagnosis.
Speaker 1 (26:13):
Professor Gustela is at the University of Sydney and joins
me on the Happy Families podcast today. You've brought up
medication provocative question in my social media reels lately, a
couple of things have come up. I think it has
a lot to do with the fact that RFK Jr.
May be coming into the United States to look after
health and so on. And I've had a few reels
(26:35):
come up that have been really pushing hard at the
idea that autism and this has been around for such
a long time. Autism is called cause by vaccines, and
specifically those reels where somebody will say, I've got twins.
They were vaccinated. One of them started to change their
behavior a short time later, the other one didn't. One
(26:56):
of them has an autism diagnosis, the other one doesn't.
The question is twofold. Therefore, what can we say about
vaccines and other environmental factors and neurodevelopmental conditions like autism
and Secondly, where does autism come from?
Speaker 2 (27:14):
Yeah? Okay, So the first question is pretty easy to answer,
and it's easy to answer because there's been a lot
of scientific studies conducted on the role of vaccines and
potentially causing autism, and even to the point where studies
have looked at the specific properties of the contents of
(27:35):
the vaccines, such as mercury, to try and understand if
there's any link associated with the specific properties of vaccines
and the development of autism. Okay, now there's one thing
we can't get away from. The one thing we can't
get away from is autism is often first identified at
(27:56):
the age of two, and vaccines that we're talking about
are often given to children at the age of two
because that's what that's the timeline that they're given. Right.
So there is this incidental, if you like, interaction where
parents will often report their child receiving a vaccine and
(28:17):
at some point in time after that noticing autism symptoms,
and that's sort of that relationship between the two is
what's partly generated a lot of the worry for parents.
But all these scientific studies have shown very very clearly
that none of the ingredients are associated with the development
of autism, and like there's been such an so many
(28:42):
different ways, whether you look at countries that didn't have
vaccines and then introduced vaccines and they've looked at the
autism rate, or you've had laboratory studies where they've massively
increased the ingredients of those specific ingredients to see how
it affects development in animals. For those studies, we know
(29:03):
that there's just no relationship there. And we can say
that with a really strong belief because the science around this.
Everyone's been so worried about it and there's been so
much hys theory about it for so long, the science
around is really quite robust. The most likely reason that
we have these constant conversations is because of a the
(29:26):
association and then B because there is a lot of
vaccines and we saw it with the COVID vaccines. They
often get caught up into narratives around government control or
big farmer and so there's a lot of suspicion around
this idea of control and vaccine. So I think it's
just going to be an internal conversation that goes on
(29:48):
while people remain suspicious about these things.
Speaker 1 (29:52):
So where do you think that it does come from.
Speaker 2 (29:54):
The heritability of it is the most significant factor, so
that means largely genetics. We know also, just going back
to my trends diagnostic pedal, is that the genetics may
not necessarily be specific to autism, but if you are
autistic or your parents are autistic, that makes you more
(30:16):
susceptible to a range of neurodevelopmental conditions. But it's certainly
genetics play the biggest factor. The rest of it is associational,
and we think that, you know, the best science at
the moment is suggesting, well, maybe there are things that
can say you've got vulnerabilities there. Maybe there are things
(30:37):
that can push you over the edge of that vulnerability
to then lead you into develop the diagnosis. But you
have to have that significant vulnerability there, and then there's
a lot of debate around what those things could be.
Whether nutrition plays a part, whether living and being around
pollution might play a part. You know, stress might play
a role. There's a whole range of factors which we
(30:59):
can't they're really hard to pull apart causily, but we
think if they do play a role, it is about
pushing development over a threshold where there was that genetic
vulnerability to begin with, and I don't think there's any
evidence that autism would develop without that genetic vulnerability in
the first place.
Speaker 1 (31:17):
Following through on this executive function theme, what specific strategies
can parents use to support a child with executive function
challenges at home?
Speaker 2 (31:29):
Life is busy for many many families, and it can
get chaotic very very quickly. And so for people without
executive function delays, they might be able to navigate all
the shifting needs, the different demands you know, reading and
just give an example, reading one thing and listening to another,
(31:50):
remembering and recalling information, need to make the bed, need
to pack my lunch, so many different things going on once.
Some people can navigate all that and get through. But
if you want to make life simple, structure, structure, structure, Yeah,
so kids, particularly with executive days, really really better effort
(32:13):
from lots of structure, So be really directive, have reminders,
lots of tip sheets, and along with that, as hard
as it can be, the more emotional people get, the
more anxious people get, the more executive function becomes even harder.
So you've just got it's a calm environment, lots of structure,
and then what the evidence shows is then supports around learning,
(32:35):
So they might need not so much because they're not
non intelligent, because often it's not about intelligence. Maybe it's
about making sense of the information and structuring it. How
do I go, I have a lot of kids, how
do I even start an assignment? You know, Like I know,
I can almost envisage what the assignment's got to look like,
but I just don't know what I need to do
(32:56):
to start it and put it together. So it's often
having a tutor or one or a parent to really
sit down and assist them just to put the things
together and develop the habits and skills that enable them
to get things together. Tutors often help, and the literature
shows that they could often make a huge difference around
(33:18):
again not about knowledge, but around organization and structuring things
and providing reminders. And if you find your kids are
like leaving everything at the last minute, then you know,
having someone that can help them start earlier and also
to identify what's going on anxiety wise. When they do
start early, there's probably a whole range of things going
on there.
Speaker 1 (33:39):
When you say structure, I start smiling to myself because
given the hereditary nature of many of the near development
or conditions we've discussed today.
Speaker 3 (33:46):
Now, if you've got a parent who's got ADHD, absolutely
they're going I want to help my kid to have structure,
but I don't know what that is myself, Like, it
can be extremely challenging for them.
Speaker 1 (33:57):
Yeah, let's step into the school text for a sec. Yeah,
what should parents tell teachers about executive function challenges? Like
how does a parent effectively advocate for their child to
get the support that they need at school, especially when
there is no diagnosis yet or there's funding challenges or
(34:17):
I mean, in our case, we just withdrew our child
from school because we found it was it was just
too hard in spite of our best efforts to advocate
for our child.
Speaker 2 (34:26):
Yeah. Well, you know, there's never a right way here,
and this is an incredibly charged environment, and we know
that teachers and schools are, you know, particularly the public
systems are under enormous pressure to deliver. So we recognize
the complexity of the question you're about You've asked, right,
but at the end of the day, the kids should
be at the center of it, and the kids whose
(34:47):
needs really matter, we want them to succeed the most.
And so to answer the question specifically, I think parents
may be the best advocate, but also getting a system
of support around the child world is really important. So
you know, I think having a pediatrician or a psychologist
or a depending on the needs that an I T
(35:08):
or speech you that can advocate alongside you is really
really useful because not only do you bring a huge
uh you know, detailed knowledge of your child, but you
also bring a degree that where you need someone who's
independent to communicate. So I think getting getting that team
(35:30):
of support around you is really important. Secondly, teachers, you know,
are they the best place to start? There's often learning
support teams, and you know they may be the best
if you're like educated in the space, yes, and then
then may be the teacher in combination with them. And
(35:52):
then also I guess really practical stuff that if you
find stuff works at home for your child, advocating really
practical stuff to the teacher is useful. As you know,
teachers have a big job to do, so you know,
being aware of what their capacity is is important as well.
(36:13):
And then you know, this is a moving space. So
one thing I've often said to parents, if the school
is one that doesn't meet the needs of your child,
don't be afraid to shift schools. And it may not
necessarily be about the school. It may be about the
teacher at that school that is just not the right fit.
(36:33):
Don't be afraid to go to different places to get
the support that your child needs because and of course
it could be about the peer groups. So you know,
if it really isn't working and you're finding yourself hitting
up your head up against the brick wall, you don
can get a lot of gain by getting into different schools.
Speaker 1 (36:53):
One more question on executive function. How does a parent
explain to a child in a way that builds their
confidence rather than creating shame and a feeling that they're
not enough. What's going on? Like, how do you sit
down with a child and say, we've done these tests
and euutistic or we've done these tests and we think
ADHD is the reason that these challenges exist you have
(37:17):
in your developmental condition.
Speaker 2 (37:19):
Yes, So I think that what parents need to do
really is the first thing is we're not talking about
a lot of deep stuff when it comes to executive function.
It's kids needing to structure and support and you know,
make their bed and get dressed, and if they're really
struggling with it, they'll know they're struggling with it, and
(37:39):
just being supportive and providing the steps and the structure
that's needed for them to do it, but being open
that maybe they actually need that structure and support because
it teaches them not that they have a deficit, but
actually if they're struggling with something, maybe there's supports they
can reach out for, or maybe things that they can
(37:59):
do to structure their own activities to do to help themselves.
So I think that the first step is really to
make sure that you're doing it in a supportive way,
but you are providing different steps to help kids complete
the tasks. The second thing is, you know, whenever you
give information, always give it in a really positive way.
(38:19):
And you can remember also all the strengths that you
recognize in your child. And we know that caregivers. We've
done lots of studies that have shown caregivers know lots
of strengths about their child and they talk about them,
but when they come to sort of the problem, they'll
often not only talk about the problem. So just make
(38:40):
sure you bring in some of that strength based stuff
and make sure that they feel valued and heard when
you're talking about it. But don't be afraid to highlight
that maybe kids that they need to do certain things
to succeed, and that'll teach them how to navigate things
in the future.
Speaker 1 (38:56):
A technical question for you that is getting back into
some cutting edge research. There's been some fascinating studies done
using rat models that have caught my attention that suggest
that the cerebellum. So for people who are not familiar
with the cerebellum, it's kind of top of the brain
stem back of your brain, right at the very back
(39:16):
at the bottom of your brain, the back of your head.
And what it does is it helps It's attached to
about eighty percent of the neurons in our brain, so
it helps us with breathing and digestion and all of
the automatic processes that keep us alive. But it's also
associated with automating behaviors like understanding social cues and remembering
(39:37):
physical actions like how to pick something up like a
pen or a pencil and hold it correctly. So this
research that's caught my attention suggests that since the cerebellum
is so involved in automating certain behaviors properly, it potentially
also explains challenges in ADHD autism, dyslexia, dyspraxia with ADHD.
(40:00):
Automating in terms of long term planning with autism, nothing
automating in terms of reading social cues with dyslexia. Nothing
automating in terms of remembering what that letter is symbolic
of or represents in terms of dyspraxia, not remembering how
to hold the pencil. Are you familiar with the research
and what do you think it might mean?
Speaker 2 (40:21):
Well, you know, I think that general idea is pervades
a lot of the science around autism and neurodevelopmental conditions
in general. And you're talking about cerebellum focused research, but
you can also put that into a front alone example
where you've got goal development and set shifting and switching attention.
(40:43):
And if kids aren't paying attention enough, or they aren't
able to coordinate the information enough, or they're feeling overwhelmed,
then they cannot consolidate that information for learning and they
won't be able to recall that information when they need it.
And so that general idea or model is, you know,
(41:04):
how we consider a lot of neurodevelopmental conditions to I
guess change the way that kids learn and where the
supports are needed in terms of providing that structure and
support to be able to sort of help with consolidation
and retrieval.
Speaker 1 (41:20):
I love that. So essentially, the executive function the work
that you've been focused on. That's the top front of
the brain, right, the prefront of course, that's right. This
is this is down the other end of the brain.
But you're suggesting that if one of them is no online,
the other one can't function well, and so that works.
Speaker 2 (41:36):
That's right. So I think we in the nineties we
thought about, you know, brain systems as different discrete components, right,
so that we had this part of the brain is
only responsible for.
Speaker 1 (41:47):
Memory left brain or on right brain.
Speaker 2 (41:49):
Yeah, And I think the big shift over the last
twenty years has been acknowledging that different brain systems, well,
they all interact, and you know, if there's usually around coordination,
this is why executive function is so important. If there
are issues around the coordination of brain systems, it has
(42:10):
a broad effect across It's a connectivity issue rather than
just one specific thing not doing it what it should do.
Speaker 1 (42:17):
Adam, you're a mountain of knowledge. The conversation has been fascinating,
it's been practical, but it's also been wonderfully insightful, and
my sense is that for parents who are grappling with
the challenges that come with raising children who experience neurodevelopmental conditions,
my sense is that you've been a ray of hope
(42:38):
and like I said, just just a mountain of knowledge
and information. So grateful for your time. You've been extremely
generous in what you've shared. Thank you for your input today.
Is there anything at all that you think that we've
either missed or that you'd just like to grab a
highlighter and scribble as hard as you can so that
parents really grab that one thing and hold on to it.
Speaker 2 (43:01):
The one thing that I would want parents to do
is to get this like to battle, to battle to
get the support they need. It's not we don't. Unfortunately,
our system is not easy to navigate. It's not like
getting your teeth cleaned. It's it's it's excuse my friendships
bloody hard and for parents, it's going to be a
(43:22):
long term battle at the moment until our system is better.
To get the support that your child and your family needs,
and to know that there are many many other families
in the same position as yourself, and to persist that that.
You know, I think it's it's about persistence and and
you know, for those parents that are doing that to
(43:43):
my hat's off to you because you're advocating for your
child and that's it's a really important thing. Adam.
Speaker 1 (43:50):
Really appreciate your time. Just hearing you say that, I'm
thinking of all all the emails and all the social
media messages that I see where parents are saying I'm
dying here. I'm just tearing my hair up. This is
so so hard. Really appreciate your compassion and the wonderful
work that you do and again your generosity.
Speaker 2 (44:06):
Today.
Speaker 1 (44:07):
We spent a lot of time talking about this today.
You have so many people and so many things that
are pressuring you for your time. So thank you for
helping us to get this message out today.
Speaker 2 (44:17):
Thanks Justin, It's been a pleasure. I've really enjoyed it.
Speaker 1 (44:19):
Professor Adam Guastella is at the University of Sydney and
doing incredible work advocating for the needs of children with
neurodevelopmental conditions, and he's joined me today on the Happy
Families podcast. The Happy Families Podcast is produced by Justin
Roland from Bridge Media. If you would like more information
and resources that can make your family happier. Please visit
(44:40):
us at happy families dot com dot a you, and
we'll link to as many things as we can that
Adam's done in our show notes to give you that
extra support
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