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Ever wondered how shifting from a medicalized view of neurodiversity to a more human-centered understanding could transform your parenting journey? Australian autism and neurodiversity specialist Kristy Forbes joins us to unravel this profound shift. Kristy's personal journey of being diagnosed with autism and ADHD at 33, thanks to her non-speaking daughter, is both touching and enlightening. Hear how she navigated the initial grief and relief, and how acknowledging her family's neurodivergence has been a transformative process.
danabaltutis.com, mytherapyhouse.com.au, https://mytherapyhouse.com.au/your-childs-therapy-journey/ https://www.danabaltutis.com/services
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Episode Transcript
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Speaker 1 (00:05):
Hi Christy Forbes, welcome to the Empowered Parent
podcast.
I'm thrilled to have you on theshow today because the work you
do here in Australia andinternationally for and with
neurodivergent individuals andfamilies is incredible and so
important.
You are an Australian autismand neurodiversity support
(00:30):
specialist.
You have degrees in politicaland social sciences, education
with disengagementspecialisation, literature, film
and art.
You have a special interest inPDA-related trauma and burnout.
You're also the founder anddirector of In Tune Pathways.
(00:53):
You are formally identified, oryou formally identify, as being
autistic and ADHDer and have aPDA or, for our listeners,
pathological demand avoidanceexpression of autism.
As well as that, christy, youare a parent of four
(01:15):
neurodivergent children, allwith varying, unique
neurodivergent experience andexpression, including
non-speaking experiencing,apraxia, dyspraxia, tourette's
and PDA.
Wow, what an eclectic mix andwealth of knowledge you have.
(01:37):
So, before we delve into yourprograms and how you support
families and individuals, Iwonder, christy, whether you
could share with us about yourjourney and how you came to be
who you are today.
Speaker 2 (01:58):
I just want to say the way you just introduced me
was so.
I've never experienced anythinglike that.
You, the way you used the wordyou throughout that was like a
gift of delivering informationto me about myself that cut out
(02:23):
the imposter syndrome.
It's like you took myexperience and delivered it in a
way that was so beautifullyempowering and reminding me.
That was really moving.
Yeah, you are christy, you are.
Speaker 1 (02:50):
You are moving in our community, you're moving in our
society, and we need peoplelike yourself, and that's why
I'm really excited that you'rehere today oh, thank you, I'm so
excited to be here.
Speaker 2 (03:05):
My journey that brought me to who I am now.
Gosh, gosh, I think I spent 33years thinking I was made wrong,
that there was something notright, that I was a second class
or second rate version of aneurotypical whatever that is,
(03:30):
and I think, because I had grownup in poverty with a single
parent, lots of, lots ofintergenerational
characteristics of trauma.
I always put it down to that oh, it's just trauma, not just
trauma, but it's solely trauma.
And if I just keep working atmyself, one day I'll be a normal
(03:53):
person, one day I'll be atypical person and I'll be
better and I'll do better andI'll be a better parent and a
better wife and a better human.
And then I had this gorgeousbaby, my third baby, who is 13
(04:19):
now and non-speaking, and Idon't know how, but I knew when
she was born that there wassomething very special and
different about her presence andour connection, and it was so.
She taught me so much, but sheled me to the understanding that
, in fact, our entire family isautistic.
(04:43):
We're all autistic.
And so, at 33, I sat in theoffice of a psychologist who
said you are autistic, christy,and I cried and she said why the
tears?
And I said well, it's a mixtureof grief and relief.
(05:05):
Grief that I've spent my entirelife up until that point
fighting so hard in the pursuitof being someone I was never
supposed to be, and relief thatI didn't have to do that anymore
and instead I could explore theidentity and culture that came
(05:29):
with being an autistic personfor me and what that looked like
for me, and whether somethingwas dysfunctional or a different
culture, a different way ofbeing in the world.
And so, from there movingforward, things changed and I
guess, along the way, we'relearning for all of our lives,
(05:50):
aren't we so?
Speaker 1 (05:53):
did you find that you could put everything in its
place once you had that chatwith the psychologist, Did
everything sort of fall intoplace?
You know your past life visionsor images.
Speaker 2 (06:10):
I wouldn't say the psychologist got me there,
though, because I think thereare wonderful, wonderful
professionals and serviceproviders, but I worked in the
field and I didn't know anybetter.
I was supporting families withautistic children and I didn't
realize I was autistic, or myown children were, so I think
that was really reflective ofthe professional development on
(06:33):
offer and the training that wewere having.
I was a qualified educator aswell, so what I thought I knew
about neurodivergence wasn'thitting the mark, because I was
looking at a medical, pathologyperspective rather than the
human perspective, and so ittook a lot and I think it
(06:55):
continues to take a lot forpeople to let go of everything
we think we know in order to beopen to a new experience, and a
large part of that, for me, hasbeen really challenging my
perceptions of reality aroundwho human beings are supposed to
(07:16):
be, and being a woman,identifying as a woman and
having that social and culturalconditioning to be a caretaker
and to push through burnout andto be the person that resources
everyone else in the family anddoes all the learning and does
all the everything undoing that,undoing all the roles that I'd
(07:42):
taken on as a high-maskingautistic person picking up along
the way in childhood.
Well, okay, I'm a female, thisis how I'm supposed to present
and speak, and this is what Ishould be interested in and this
is how I should dress.
That's just one identity,that's just one part of who I am
(08:03):
.
So, really, looking at all theparts of me, even the parts I
rejected and resisted and going,but really what does it mean
for me and what does it feellike for me?
And that can be reallychallenging and scary in the
world we live in.
That continues to reinforcestereotypes and behaviorism, I
(08:28):
guess.
So yeah, things made sense, butit's a continual path.
Speaker 1 (08:34):
And I've worked with so many parents with their
children and you know they'vecome from the medical model.
So you know, oh my goodness, mychild's autistic.
And then there's grief, andthen there's suffering, and then
there's trying to put thatchild into a position where
they're going to be quote,unquote, normal, whatever.
(08:56):
That is, as you say,neurotypical.
Um, what could you?
and often I see some of theparents that I've worked with, I
I think they're neurodivergentthemselves, but they don't
realise they're neurodivergent,right, because it's almost like
a blind spot and you know I'vegot this thing about perception
(09:16):
is projection.
It keeps coming back in my mindover and over and it's almost
like they're trying to.
Maybe they felt like theydidn't belong in their childhood
.
Maybe they felt like they hadchallenges in their childhood.
They don't want their child togo through it and so they're
trying to normalize their childso their child doesn't have, you
(09:39):
know, they don't have to suffer, as they've've told me, the way
they have.
Could you talk to that please,and what?
Speaker 2 (09:51):
would you say Christy ?
Speaker 1 (09:51):
to those parents.
Speaker 2 (09:54):
I love that human model rather than the medical
model, love it.
What you've just outlined is Ifeel like this is the heart of
where I work from with families,because we still think that
neurodivergence is a medicaldisorder.
And how could we not think thatIf you're exposed to the world,
(10:15):
then that's the first narrativethat we have access to when we
don't know better or when we'renew to a human experience, as in
having children who areidentified autistic or you know,
being closer to autism or ADHDor whatever it is, and what
(10:35):
you've just outlined about theparent experience is so
important.
This is grassroots,foundational work, because I
know this might be controversialto say, but I'm not even sure
that I've ever met a parent ofan autistic child that was not
autistic, because for me it'slike saying, well, I have
(10:59):
Scottish roots or I have brownhair, I'm autistic.
And it's not just a childrocking in a corner, as Canna
would have us believe, from 1943.
We're learning more and moreabout this, but almost every
(11:19):
parent of an autistic child thatI've come into contact with
will be questioning that aboutthemselves.
Yet it often begins with but Ihave trauma, but I have a
background of trauma.
My father was an alcoholic.
My mother had maybe somediagnosis of a mental health
(11:41):
condition and that informationright there is culture that is
unidentified neurodivergence,intergenerationally, alcoholism
to cope with being different,misdiagnosis sometimes, and
sometimes dual, or not knowingthat we're autistic but being
(12:03):
diagnosed with manic depressionor whatever it is.
Those are really importantclues right there that we grew
up during a time where no onehad a clue what autism was.
So how could we know whetherwe're autistic or not?
And nobody is exempt frombehaviorism.
(12:24):
Nobody that lives in this worldis exempt from feeling the
pressure from society to show upin a certain way.
We all mask to a degree, butwhen you're a parent of an
autistic child, it is verycommon and very normal and very
(12:46):
easy.
The first part of my journey wasidentifying things in my now
26-year-old who was my firstchild, and panicking about it
and constantly trying to controlher behavior.
I didn't know she was autistic,but I thought, oh my God,
they've learned things from me.
(13:07):
I'm so messed up.
They're anxious because I'manxious.
Oh, I can't let them.
Don't talk like that, don'tdress like that, don't look at
people like that, constantcomments about what's acceptable
and what's not.
Now, that's conditioning, thatis trauma as well, and so I was
(13:28):
projecting onto my children myown trauma, thinking I would
protect them from being exposedto the things that I was as a
vulnerable little girl and youngwoman.
But in in turn, I harmed themmore than I could have imagined
anybody else would.
And even that, that's not theworst thing in the world.
(13:53):
We get to make amends and weget to recover and we get to
reconnect and we get to hashthat out together.
But that is so common as parents, when we don't know that, it's
okay to extend to ourselves thesame compassion that we extend
to our children when we knowthey're autistic.
(14:13):
Because if we're seeing thingsin our children that we relate
to, like I remember I would lookat my non-speaking daughter and
think I know why she's liningthose up.
Oh, that's so satisfyingwatching her do that.
I know why she's doing that.
I can't explain it, but I justI get it.
You know there were so manythings like that.
(14:34):
Those are clues, they're allclues.
So, yeah, I think it's reallyimportant for us to, slowly and
gently and sometimes it'simportant to seek support for
this be willing to visit theidea of going within and
(14:59):
addressing the unseen and theunheard and the unknown, because
we've been taught to pack itdown, especially when we're
parenting.
Pack it down, put it asideaside.
Put it away, show up for others, be in your carer role, and
that will only get us so farbefore we burn out and then we
won't have a choice about whatwe're unpacking, because it will
spill over.
Speaker 1 (15:18):
So yeah, and, as you're speaking, I'm reflecting
on some of the parents that I'veworked with, because I've
worked in a very relationshipbased approach.
That's where I work from andyou know parents come in and
they say I don't get play.
(15:40):
Why?
Why are we doing play?
We need to be doing cards.
You and I think, yeah, that'sthere.
You know, and and that's theother thing that I keep thinking
of about the approaches thatthe approaches to support that
parents choose for theirchildren, it's not so much about
their children, it's about them.
(16:01):
So if we're looking at thebehaviouralist approach I'm not
going to have a debate on thattoday, yes or no but if we're
looking at the behaviouralistapproach, where it's very
structured and the child may bestruggling in that approach, but
the parent, like you said, whenthe child's lining up the cars
(16:22):
and saying, oh, that's sosatisfying, that's so satisfying
, that is very satisfying forthe parent, because the parent
feels like they understand it,they're in control.
Their child may not be, it maynot be helpful developmentally
for their child, but for theparent it is, and often it's
about calming the parent so theycan be there and present for
(16:44):
their child, don't you agree?
Speaker 2 (16:47):
I would definitely disagree with whether it's
developmentally appropriate.
It is absolutely helpful for anautistic child to be allowed to
play in a way that isappropriate for autistic culture
.
And this is one of the thingswe misunderstand we're not
neurotypical, we're autistic.
So we wouldn't take, say, aJapanese person and say, well,
(17:10):
you're not speaking correctlybecause you're not speaking
English.
We wouldn't take someone who isEnglish speaking and say, well,
you're not speaking rightbecause you're not speaking
Japanese.
What are you doing?
Well, you're not eatingJapanese food.
What are you doing?
And our response would be, well, I'm not Japanese, I'm
Australian and I enjoy Japanesefood and I'm happy for you to
(17:33):
show me it and I'll definitelyjoin you in that, but I'm not
Japanese.
Or they might say, well, I'mnot Australian and this is my
culture, which is important tomy identity and normalizing who
I am without shaming.
So autistic play is appropriateand when we are.
(17:55):
We had a support worker whoactually said to me one day
Christy, I don't know how to dowhat you're asking me to do with
one of my children, and I saidI'm not asking you to do what
you're asking me to do with oneof my children.
And I said I'm not asking youto do anything.
Just spend time and hang outand game with them and go and
have fun and access community.
And she said all of the otherfamilies I work with have me
(18:18):
playing games to practiceturn-taking.
They have me using flashcardsfor social skills taking.
They have me using flashcardsfor social skills and I get it
because I was doing that with mychildren for a really long time
and I get it.
We want to avoid pain for ourchildren.
We want them to haverelationships and we want them
(18:40):
to be happy and functional,whatever that means, and we're
convinced that if they'reautistic, they won't access
those things.
But I said to this girl, who isjust incredible we're not
typical people.
Our social skills are fine.
There are studies, there isresearch that will show you that
(19:04):
autistic people together weunderstand each other because
this is our culture.
This is how we talk.
We info dump, we line things up, we talk at each other, we talk
about trauma and we go deep.
Quick Play is better thanflashcards for a lot of us
because it provides relationalsafety, helps me to know you and
(19:28):
help me to trust you.
It helps me to develop and honemy interpersonal skills and all
the very things you want me tolearn about I can access through
play, but it was hard for herto undo that conditioning around
.
Well, I need to be puttingflashcards in an autistic
(19:49):
child's face to kind of get themto understand that this is how
we greet people and no, theycan't not say thank you.
We have to get them doing that.
When we start out with anautistic child, and that's what
we're doing from as early as wedo, what is the message that
(20:10):
we're giving them?
Is it we love and accept you asyou are, or is it we love and
accept you conditionally andwe're going to try and change
the way you relate to the worldand engage with the world?
Now, I'm not saying that from aplace of wanting to make people
wrong, because I absolutelyempathize and understand as a
(20:34):
parent myself.
But these ideas around havingto do everything in life in such
a structured way, having chartsfor everything if it's helpful,
wonderful, but it's also justbecause the word autism is
(20:59):
attached to a child, it alsodoesn't mean they have to have
all these therapies and allthese things in their lives
because they're autistic.
We're individual human beingsand we're all different.
So play is safe and it's great,but I'm going to be the first
(21:22):
to put my hand up and say Idon't love play as a parent.
I don't.
I don't love play as a parent,so we do it in a way that I
sneakily meet my needs as well.
Speaker 1 (21:36):
Yeah, and play's not easy, Christy.
Even for myself as a speechpathologist it's not easy.
Myself as a speech pathologistit's not easy and I think that's
why I found it really difficultto do traditional speech
pathology, because I found itreally hard to do, like I
(21:57):
remember when I set up ourpractice.
We had no tables at thepractice, we had sensory motor.
We had just fun, fun, funthings and people you know, the
kids would call it the fun house, the play house, and parents
would be like what are we doinghere, what are you teaching them
?
And I said relationship, yes,longing.
Speaker 2 (22:18):
Yeah.
Speaker 1 (22:19):
Like letting their guard down.
Speaker 2 (22:21):
Yeah.
Speaker 1 (22:21):
Because they've had this whole day at school with
their guard up, with theirmasking.
They go out into community.
They're with the grandparents,they've got to say thank you,
they've got to say please,they've got to you know, and
then, when they're in anenvironment where they can be
themselves, that's what I wantfor these kids.
Speaker 2 (22:42):
I can't resist that.
Speaker 1 (22:44):
That's how that is their identity.
But it's really about still,it's very early days, I think,
in this, in this world of theway we are, because even the
education system is not likethat.
So, yeah, we won't go there,but um.
So I think it's just reallyimportant and that's why I want
(23:07):
to interview people likeyourself.
You know, the message toparents is it's okay for your
child to be who they are.
It is essential for your childto be who they are because they
are part of the beautifultapestry that makes our world
right.
Mm-hmm.
Speaker 2 (23:30):
But it's so much more than that too.
It's like, um, you were sayingour children, they're masking to
be at everything.
When you're autistic,everything has a cost
energetically, physically,spiritually, mentally Everything
has a cost.
So when we choose to do thingsthat bring us joy, we need
(23:51):
recovery from that.
And what we're not talking tofamilies about is autistic
burnout, co-occurringinflammatory-induced conditions
from prolonged chronic stressthat's showing up in more and
more autistic children Cannot goto school because of burnout,
cannot access community becauseof chronic anxiety, and I think
(24:16):
what we're missing here isletting families know being
autistic means we have acompletely different
neurobiology.
We have a different nervoussystem, so whilst we can do
those things, the disability isfluctuating.
So in one moment we might befine to go to school or go out
(24:38):
in the community or go to asupermarket or be practicing
social skills or whatever it is,and then we might be in bed for
three days after because weneed recovery time.
And the more we push and pushand push the way that we're
often encouraged to in therapy,therapeutic approaches in any
(25:02):
way, we might actually befast-tracking our children into
burnout.
And coming back from burnout inchildhood is very hard because
it means our trust has oftenbeen depleted.
It means we're internalizing.
Well, where is the space in theworld for me?
Where do I fit?
(25:23):
Because everywhere I turn,someone's trying to mold me into
something.
So the fact that you have thosespaces for those children to be
and to move their bodiesbecause we need that and to play
and to stim, stimming is soimportant.
But it can be embarrassing forfamilies because of our fears
(25:45):
about how our children will bereceived by others.
But stimming regulates ournervous system.
There's so much informationabout us.
Speaker 1 (25:56):
It's soothing.
Right, it's soothing.
Speaker 2 (26:00):
Absolutely, and I think you know when we go to
work, if we're in a workplaceall day.
I know as a mum, when I was ateacher, when I was in social
work, whatever, whatever we'redoing, I couldn't wait to get
home at the end of the day, ripmy bra off, put my slippers on,
(26:21):
you know, get out some comfortfood, all of that stuff we do.
If, if we can take thatexperience and transfer it to
our children for a moment, goingto school all day, we might
have fun.
Yeah, we might love connectingwith our friends.
I used to enjoy going to work.
I had some great workmates.
We'd have laughs, but there'snothing, nothing like getting
(26:45):
home and having the space andthe freedom to be who you are,
without judgment, withoutcriticism.
You feel like you can breathe.
Our children must have that aswell.
It's a basic human need andright.
They come home from school andwe're straight into flashcards
(27:09):
and therapeutic approaches andthe belief that the more we do
of that, the more normal oradaptive they will be.
We don't realize we could bepushing them into burnout and a
loss of identity.
Like who am I?
We get into adulthood and oftena lot of us have an identity
crisis because we don't know whowe are or what foods we like,
(27:32):
or we haven't had theopportunity to explore who we
are just as ourselves.
Speaker 1 (27:40):
Because there are lots of structures and
expectations put around foodsand eating and what is normal.
Again, you have to have yourthree veg and you've got to have
this and you've got to havethat, and that's so stressful
and, like you say, that burnout,it's very real.
(28:03):
And I'm just reflecting aboutyou know you mentioning the
autoimmune issues and how manypeople now have autoimmune
issues, and you know people areholding they're just holding
this energy inside them and theycan't be who they are.
And then I think about, youknow, all the extracurricular
(28:27):
activities that children areexposed to.
Well, you know they haven't hadenough at school.
Now they're going to Kumon andthey're going to this and
they're going to that.
And you know, unless the childis definitely interested, if
they're interested in, like, aMinecraft group or a computer
group or piano, whatever it is,it's there coming from their
(28:51):
heart.
But when it's again enforced tobe more academic or catch up on
your work, that would be reallyhard for children too yeah, I
think too that our childrenbring with them an inherent
wisdom.
Speaker 2 (29:07):
They have so much to offer the world that we live in.
Here we are, as adults, doingall this lip service around
decolonizing our work andunpacking all these harmful ways
that we've lived for hundredsof years, and our children show
(29:28):
up with these offerings andthese opportunities to reframe
and to reconsider.
And in our own fear and in ourown trauma because we haven't
unpacked our own stuff, we're soquick to go what?
Oh no, you can't do that.
No, and being in the businessof.
(29:48):
A huge part of what I find I'mdoing now is working with
families recovering theirchildren from burnout, from
really mental health crises thatI never would have expected
children to be experiencing ever, that I never would have
expected children to beexperiencing ever.
But they are, and it's more andmore common amongst
(30:09):
neurodivergent children.
So I'm working with hundreds offamilies to recover their
children and, in that process,recovering families, because
we're only doing what we thinkis right and good and best from
what we're only doing what wethink is right and good and best
from what we're learning, andthen we realize that we've
(30:31):
contributed to harm and I reallyfeel so much compassion for
those families because it's nottheir fault.
It's not.
We're doing what we think isright for our children from a
space of love, and I think theidea is around what's good and
(30:56):
bad, what's right and wrong.
Don't let your children accessscreen for too long.
Like you said, the meat andthree veg Sometimes, when you
are in a situation where it'sabout keeping a child alive,
those things can be put aside.
They have to be put aside.
We have to reprioritize andthis is what we're not teaching
(31:19):
families.
It's okay if your child's noteating three vegetables.
Are they eating?
Are?
Are they fed, because fed isbetter than not?
Are they having glimpses ofhappiness?
Do they have relationships?
Are they allowed to say no andbe heard and is there no honored
(31:40):
?
These are the important thingsabout development for any
children and I just don't thinkthat a lot of autistic families
or people raising autisticchildren have access to know
that people raise their childrenas regular children.
Speaker 1 (31:59):
Christy, how do you know, like if a parent's
listening and they're thinkingabout this, how would they know
what would be some of the signsthat their child is on the path
to burnout?
Speaker 2 (32:12):
a lot of resistance.
I think it depends.
It's so individual, but itdepends on the safety within the
family as well.
Are they allowed to say no ifthey're allowed to say no it If
they're allowed to say no,there's probably going to be
more vocal resistance,exhaustion, not being able to
(32:35):
shower.
But what can be deceptive, Iguess, in presentation is our
children may not say no, theymay just not do it, and we're
taught as adults that we'resupposed to exercise control
here and take the reins, and sowe might be believing that our
(32:57):
children are choosing not to doit because they're trying to
take control.
Yeah, they are trying to takecontrol, but when you're
starting from behind it's notreally control.
They're trying to access equityand they're trying to access
balance.
Speaker 1 (33:12):
And I absolutely, I absolutely hate the word
non-compliant.
I absolutely, and I hear thistime and time again from more
institutional facilities.
You know this child isnon-compliant.
(33:33):
They are non-attentive.
They've got attention deficitdisorder in this space and then
I look at where their interestsare and I'm like they've got
great attention.
It's amazing.
Do you find that, christy?
Speaker 2 (33:55):
I've lived that.
I've lived that.
It makes about as much sense tome now, finally, as saying to
someone well, why are you notpainting like Picasso?
Why?
Well, we have to have a goalfor this and we must put
together a plan.
(34:16):
And that might sound a littlebit extreme, but every human
being has a spiky profile.
We're not all mathematicians,we're not all writers, and the
thing about being neurodivergentis we have creative brains.
We definitely find differentways of doing things because we
(34:39):
are divergent in nature.
So the word noncompliant thatspeaks volumes to me about the
people using it.
It gives us more informationabout them than it does the
child.
Really.
It reminds me of the society welive in and there is a lot of
really great change happening.
(35:00):
But non-compliance ordisability, non-compliance or
disability, noncompliance ordivergence, noncompliance or
support requirement I mean,imagine if we felt so unwell as
adults.
Imagine if we felt so unwellthat we couldn't get ourselves
(35:23):
out of bed to the shower onemorning and we have a team of
people come in, no, come on up.
You get.
No, come on, we've got yourclothes for you.
You should have done thatthough.
We know you can, but here'syour clothes, we've run the
shower off you go.
This is what we're being taughtto do to our children.
Now, children don't have theability always to communicate
(35:48):
their internalized experiencebecause they don't yet have the
insight to understand it forthemselves.
So we're making biasedjudgments based on their
external presentation.
And the ironic thing there is,if we're teaching autistic
children to mask, that's whatthey're going to do.
They're going to pretendthey're okay when they're not,
(36:09):
and so then we have thisconfusion around.
Well, why aren't they going toschool?
Why aren't they getting in theshower?
Why are they having toiletingaccidents?
They were toilet trained before.
These are all signs of burnoutand or leading into trauma,
because if you can't accesssafety, if you can't be allowed
to rest and we need a lot ofrest and a lot of downtime our
(36:34):
brain is constantly switched on,processing and making sense of
all the sensory input.
If we can't have a break fromthat, it's very dangerous, very
dangerous.
So when a child can't make itto the shower and I've been
through this with all of mychildren it's us that needs to
(36:57):
do the work on what ourresistance is about.
What am I really afraid of here?
What's really going on for me?
And I think that's moreimportant than anything.
Speaker 1 (37:10):
I think it's also the same for toothbrushing.
Right, you know, whether it'sshowering, it's toothbrushing,
it's having a haircut, becausethere will be times that the
child can do it when they're inthe just right place, when
they're ready to do it.
But I just love the way youtalked about masking and that we
(37:33):
are.
We are teaching children how tomask, because the other thing
is, christy, we as adults havelearnt to mask.
How many adults in our societycan be who they truly are?
Not many.
It really takes a lot of gutsto be who you truly are.
That's a great analogy.
(37:57):
The other thing I wanted to askyou about I read that on your
website, intune Pathways, youwrote that Intune Pathways is
passionate about radicalacceptance and the celebration
of neurodivergence.
I would love to know.
(38:18):
I know you've touched on it now, but I love that word radical
acceptance.
I love that phrase.
It's not a word, it's a phrase.
Could you just tell me whatthat is in Christy words radical
acceptance?
Speaker 2 (38:34):
It's definitely not what it's often understood as by
probably the cohort of familieswe're talking about a lot today
, and that is when people hearthe term radical acceptance.
I've often been criticizedbecause people think I'm saying
just accept whatever behavior isgoing on for your children.
(38:54):
It's not that at all.
It's not about behavior at all.
It's got nothing to do withthat.
It's about the humility to beable to say and know and
understand that every humanbeing is created not by mistake
(39:18):
and to radically meaning what Isaid before putting aside
everything we think we know inorder to be open to a new
experience or understanding.
I used to be an educator whodidn't believe in ADHD.
I used to think that thesechildren were just engaging with
(39:44):
unruly behaviour because theywere attention-seeking.
And now I think, even if achild is what we term as
attention-seeking, so what?
There's a reason for that.
It's reframing everything wethink we know and understanding
that there's no, instead ofseeing things as good or bad,
(40:10):
right or wrong, normal, abnormal, order versus disorder,
understanding that we are allworthy of being accepted just as
we are.
There's a difference betweenrequiring support and needing to
completely change who we arejust because we're told we're
(40:34):
disordered, and radicalacceptance is accepting in this
moment, just in this moment,what's happening for my child or
myself and instead of fightingevery single moment, resisting
(40:56):
every single moment, fightingwhat is causing ourselves more
stress and pain and our childrento be further and further away
from being connected to us asparents.
It's about having a curiousmind, you know, coming at things
(41:16):
and asking more questions thanprojecting more assumptions.
Speaker 1 (41:22):
Radical acceptance oh , I love that asking more
questions.
I because radical acceptance tome is the feeling of all
encompassing.
When I think about it, I justthink about my whole, because
people can't see me now, butit's like my whole chest opens
(41:42):
up and my arms embrace.
You know, that is radicalacceptance to me.
It's not spiky, it's notpinpointed, it's just because
it's a we have to.
It's desperate because thesedays everything is so, I feel,
(42:03):
is so structured, it's so judged.
You know, I can see kids thatare even so-called neurotypical
but are having burnout over andover because our society is made
that way.
You know, we are a society thathas got high expectations, high
(42:27):
goals.
This is what we need and evenlike with the NDIS, which I love
, the NDIS because of what ithas given our society and at
least it's put people who areneurodivergent and other people
who have neuroabilities,different abilities, in the
(42:52):
picture.
But I feel that you know all ofthat, the goals, the goals
around fixing the child, youknow, when I look at the goals
that we have and so again, itperpetuates the parents mindset
and perception, because theculture is like that.
(43:15):
It's not about, oh, that littlej, little Jimmy, will have a
happy life, or that little Jimmywill find himself you know,
it's more around that littleJimmy will be able to say two
words in, or little Jimmy willbe able to turn, take in a
social interaction.
But nobody's really thinkingabout little Jimmy as the
(43:39):
neurodivergent, uniqueindividual that he is.
They're thinking about what weexpect.
Do you find that?
Speaker 2 (43:48):
This is where I am so grateful that I am a big
picture thinker, which you know,textbooks on autism would have
you think.
The opposite to that, I'd sayI'd get wrapped up in details
and I can.
But being a big picture thinkermeans that anytime I ever have
(44:10):
to make a big decision or I'mweighing up what's important for
my kids, for me, I think in mylast moments of being on this
being a part of this, you know,experience of living now and
being on earth and being alivewill I be laying on my deathbed
(44:30):
thinking at least I got littleJimmy to speak two words before
April, the 21st in 1998.
That's what matters, you know.
Are we going to be laying thiswith our children or together,
going now?
There's something I want you toremember, little Jennifer,
(44:50):
after I'm gone Make sure whenyou're raising your children,
let them know that Nana wantsthem to always remember.
Goals about literacy andnumeracy are most important, or?
You know, I read it breaks myheart.
I had a family show me theirplan because they were asking
(45:12):
can I fit one of your programsin?
And we often say, if you needhelp, we're happy to help.
And and the goals on there were.
One of them in particular wasthe child will learn to overcome
difficulties with transitionsand perform them successfully,
perform overcoming transitions.
(45:35):
Now I'm 45 years old and I am.
I'm still autistic, believe itor not.
Haven't, haven't grown out ofit, didn't didn't run away
somewhere.
I will always struggle withtransitions because my brain is
accustomed to routinepredictability, and that's what
makes me feel safe, but I knowwhen something's going to be
(45:59):
different.
The information I need tosupport me is you have an
autistic brain, christy, and sowhat might happen is you need to
give yourself time to get usedto the sensory input so it feels
less threatening, so it's notas scary, and this will happen
over time instead of absolutelyno, you cannot have five more
minutes to play with the blocksbecause it's not as scary and
(46:19):
this will happen over timeInstead of absolutely no, you
cannot have five more minutes toplay with the blocks because
it's time to do this and youmust do it now.
Where's the safety?
How are we really supportingchildren there?
I'm going on a bit of a rant.
I'm going all over the place,oh no.
Speaker 1 (46:32):
You're a woman after my own heart.
I am smiling from ear to earand I just think, oh only
smiling from ear to ear, and Ijust think, oh only if I had met
you earlier, christy, and and Ijust feel so blessed that you
know we're having thisconversation, because I think
you know you are so right.
We need and I'm I'm a bigpicture thinker as well and I
(46:54):
always ask questions as to why.
What's the purpose of that?
Who is this serving?
What you know we've got allthis money.
You know like the ndis is a lotof money, and what are we
really investing in?
You know we're investing inthese, these children, some of
the children you know on this,um, what are they called?
(47:15):
The?
The circle that the mice runaround and around, that they've
got to do all these therapies,to do this, this and that,
rather than because I would love.
I would love that more money isinvested in parents, because
when we invest in the parents,I've seen it myself through.
You know the training and thecoaching and the support I give
(47:37):
parents.
When parents are okay and theyfeel like they can stand for
themselves, they can advocatefor themselves, then they can
advocate for their children.
They're like the pillars of thechildren's development.
So, you know, at the momentthat's still not.
I think it's coming.
(47:57):
More and more people arerealising that the parents are
the ones that need support.
And you know, like we alwayssay, it's about the oxygen mask.
Put the oxygen mask on yourselffirst and then, you know, help
your child.
But yeah, it's really, reallyinteresting.
Speaker 2 (48:14):
The oxygen, though, isn't it?
I mean, where's the oxygencoming from, exactly?
Speaker 1 (48:19):
Yeah, as long as it's not carbon dioxide, Anyway,
we're not going to go there.
That's my quirky sense ofhumour.
Okay, so I just want to justquickly touch on I know there's
no such thing as quickly.
I want to quickly touch on PDA.
(48:39):
And is it recognised inAustralia?
And if not, why not?
Why not yet?
Speaker 2 (48:47):
It's definitely recognised by some people.
It's not a diagnosis.
Usually it would be added to anassessment for autism.
So it might be autism withextreme anxiety.
It might be autism with demandavoidance.
People use different language.
It depends on who you're asking.
(49:09):
Is it recognized?
A lot of people will say it is.
I mean, it's one of the mostchallenging profiles to believe
because of its presentation,which is someone who just says
no, a child that just says no,I'm not doing that.
Very wise, switched on,connected children who know
(49:31):
themselves.
But what an incredible way tocome into the world, but what an
incredibly painful way ifeveryone around you says you're
wrong and you know you can't sayno.
So it's recognized by thefamilies and a lot of
professionals.
Often those professionals havepersonal experience as well,
though, and it's undeniable.
(49:51):
I think it's finding communityand and the pockets of that
we'll be able to support.
Speaker 1 (50:01):
How would a parent know if they've got PDA?
What would be some of thetelltale signs?
They have it themselves.
Yes, the parents.
Speaker 2 (50:11):
Yeah, that's hard because there's so much overlap.
I mean, you cannot be PDA ifyou're not autistic.
That's what research currentlystates, right, but then we don't
even know enough about autism.
Lots of adults walking aroundnot thinking they're autistic.
When they are PDA, you mightstruggle to be able to do things
(50:32):
you want to do and you mighthave reasons for that.
You might think that it'sexecutive functioning.
You might think, well, I'm ADHDbecause that's more socially
acceptable.
For some reason, pop culture,whatever it is, I don't know I'm
ADHD as well and it can be verydebilitating.
But a lot of people I meet willsay, well, my child's PDA, but
(50:54):
I'm not.
I have trauma and ADHD.
Okay, cool.
When you have a conversationwith an adult with PDA, often
they'll cover all bases, so youdon't get an opportunity to make
them wrong or give themunsolicited advice or give them
a recommendation, unless theyask If you are an adult and
(51:16):
you're questioning whetheryou're your PDA, I would always
recommend paying attention tothe feeling that you experience
when someone gives you adviceyou don't ask for.
When someone tells you you haveto do something could be
something as innocuous as payinga bill.
Do you struggle to pay bills?
(51:37):
But you, financially can do youstruggle to pay bills, but you
financially can Do you struggleto brush your own teeth or get
to the shower, but you're not inburnout and you don't
necessarily have executivefunctioning challenges.
I think it's really a processof unpacking.
Why am I struggling to do thisthing?
What do I feel when people giveme advice?
(51:59):
That's the biggest one for meIf someone says, well, what you
need to do, praise.
How do you feel about praisewhen someone pays you
compliments?
Yeah, because often we'll beaware of those things, but the
(52:19):
world has provided differentreasoning for it.
Oh, it's just my ego, or oh,it's pride?
It may not be.
Because a PDA actually, nomatter how we present, we have a
drive to be like this withpeople, places and things and us
being above is just asuncomfortable as a loss of
(52:42):
autonomy so you, you pda, islike to be um equal, but not
above or below yeah, yeah,people think we're trying to be
above, but what that is about is, if we feel below, we're going
to behave in a way especiallychildren that compensates for
(53:03):
being down here.
So I always provide this imagewith my hands holding them
together, to show us being equalwith people, places and things.
Because if someone says, allright now you got to go and
brush your teeth, then I'm downhere, I'm below.
There's a power imbalance, aperceived, and it's separate
(53:24):
from our consciousness.
We don't go.
Oh, you're trying to.
There's, there's a powerimbalance.
Like a two-year old isn't goingto say, oh, I'm sensing, my
nervous system is sensing apower imbalance.
Right now they're going tothrow something at you.
Yes, yeah, sibling, targettheir sibling, because that is
compensating for perceived powerimbalance.
(53:48):
It's very complex, but it'svery real.
Yeah.
Speaker 1 (53:59):
Just finishing off today, christy, what would be
three recommendations you couldgive parents that are struggling
with their, I guess,understanding where their
child's at, being really worriedabout their child's future?
Because being really worriedabout their child's future
(54:20):
because they might be listeningto this and go yeah, but the
school wants this and grandmawants this and I need them to be
going to university.
What's going to happen?
Oh my gosh, I'm not a goodparent.
You know, what could you say tosomeone like that?
What would be your words ofwisdom?
Speaker 2 (54:38):
Well, if we're trying to have our children become
less anxious, we're notmodelling that.
First of all, because if we'reliving in the future of what
will become of them or us, orwhat's going to happen, we're
completely escaping the now andall we have is the now.
So I would say to parents themost helpful, most practical
(54:59):
thing that we can do is accesslived experience community.
There are autistic adults whoare ready and willing to connect
with you, to welcome you withopen arms, to share their lived
experience, so you can reframe,so you can ask questions.
(55:21):
The other thing I would say is,if you like making a list, like
I love a good list.
How good is a good list really?
I've got one here.
I've got a thousand.
I love making a good list, butGod knows where it ends up.
(55:42):
I find them years later inboxes and drawers.
It's the ADHD I know.
When I say, if you like makinga list, I'm speaking to probably
98% of the parents, if theirchildren are not neurodivergent.
I used to do something as simpleas writing down what's
disturbing me and being brutallyhonest with myself.
(56:04):
What am I really worried about?
And one of mine was my childwill end up in residential care
in the future, like I've got bigstuff out there in the ether
and reminding myself you knowwhat, as much as I see a lot of
painful stuff in the world,there are also the most
(56:25):
beautiful, incredible, wonderfulhumans that exist, and the
world is changing all the time,and I can control what's within
my control.
Control what's within mycontrol and I can't do anything
more than that.
If something's bothering me ona daily basis, like getting my
(56:46):
child to school by 9am, what amI so worried about with that?
Why can't we have anarrangement where I actually
share with the school?
Well, this is hard for my child.
It would make our lives easierif we could get there when we
get there, and if they're notokay with that that's not our
stuff to worry about.
That's not, and I understandprivilege and I understand that
(57:11):
sometimes we are under a lot ofpressure with that stuff, but
it's prioritizing, like what?
What really is important?
Can we find advocates tosupport us to fight for our
needs and our children's?
Because when we take away ourown stress, when we relieve the
pressure we feel, ourrelationship with our children
(57:33):
does a 180.
I mean, a lot of this stuff isabout the stress we are living
with.
So accessing a differentnarrative and finding spaces
where we have a sense ofbelonging, that is, safe, and
accessing support for ourselvesmost important things.
Speaker 1 (57:56):
Christy Forbes.
I loved this conversation.
I am just my heart isfluttering.
I'm hoping that we could havemore conversations about stuff
any stuff in the future, becauseI think it's so important for
parents to have theseperceptions, have these words
(58:25):
that come in, because there's somany that are not like that.
You know, this is like it'scoming more and more, but we
also understand that we live ina society that is quite far from
what we were talking abouttoday.
So thank you so much for comingon the podcast and you are a
(58:49):
beacon of wisdom and hope andjust so refreshing for so many
people.
I know for me and it justvalidates to know what I'm doing
is on the right path and I knowthat other people are.
The people that are workingthis way are definitely on the
(59:11):
right path and we just need moreand more people um, doing that.
What's really interesting?
I'm just gonna, um, let thelisteners know I'm looking at
Christy.
She's in her car and there'slittle saplings that are planted
at the back there of trees andthat, to me, is so symbolic
(59:32):
because it's like we haveplanted these little ideas and
those little saplings are goingto grow to be beautiful big
trees for our environment.
So, yeah, can.
Speaker 2 (59:45):
I add to that.
Speaker 1 (59:46):
Yes, definitely.
Speaker 2 (59:48):
On the other side is a cliff edge.
Speaker 1 (59:54):
That's where you're looking.
I'm looking at the saplings.
Speaker 2 (59:57):
There's two pathways.
We can stand on the edge of thecliff and hope we don't fall
off it and feel like we're stuck, or we can plant seeds to um
move into a new pathway, a newnarrative you know, yeah, and I
I love the work you're doing andthank you so much for for
today's conversation thank you,thank, thank you so much.
Hi Christy Forbes, welcome to the Empowered Parent
podcast.
I'm thrilled to have you on theshow today because the work you
do here in Australia andinternationally for and with
neurodivergent individuals andfamilies is incredible and so
important.
You are an Australian autismand neurodiversity support
(00:30):
specialist.
You have degrees in politicaland social sciences, education
with disengagementspecialisation, literature, film
and art.
You have a special interest inPDA-related trauma and burnout.
You're also the founder anddirector of In Tune Pathways.
(00:53):
You are formally identified, oryou formally identify, as being
autistic and ADHDer and have aPDA or, for our listeners,
pathological demand avoidanceexpression of autism.
As well as that, christy, youare a parent of four
(01:15):
neurodivergent children, allwith varying, unique
neurodivergent experience andexpression, including
non-speaking experiencing,apraxia, dyspraxia, tourette's
and PDA.
Wow, what an eclectic mix andwealth of knowledge you have.
(01:37):
So, before we delve into yourprograms and how you support
families and individuals, Iwonder, christy, whether you
could share with us about yourjourney and how you came to be
who you are today.
Speaker 2 (01:58):
I just want to say the way you just introduced me
was so.
I've never experienced anythinglike that.
You, the way you used the wordyou throughout that was like a
gift of delivering informationto me about myself that cut out
(02:23):
the imposter syndrome.
It's like you took myexperience and delivered it in a
way that was so beautifullyempowering and reminding me.
That was really moving.
Yeah, you are christy, you are.
Speaker 1 (02:50):
You are moving in our community, you're moving in our
society, and we need peoplelike yourself, and that's why
I'm really excited that you'rehere today oh, thank you, I'm so
excited to be here.
Speaker 2 (03:05):
My journey that brought me to who I am now.
Gosh, gosh, I think I spent 33years thinking I was made wrong,
that there was something notright, that I was a second class
or second rate version of aneurotypical whatever that is,
(03:30):
and I think, because I had grownup in poverty with a single
parent, lots of, lots ofintergenerational
characteristics of trauma.
I always put it down to that oh, it's just trauma, not just
trauma, but it's solely trauma.
And if I just keep working atmyself, one day I'll be a normal
(03:53):
person, one day I'll be atypical person and I'll be
better and I'll do better andI'll be a better parent and a
better wife and a better human.
And then I had this gorgeousbaby, my third baby, who is 13
(04:19):
now and non-speaking, and Idon't know how, but I knew when
she was born that there wassomething very special and
different about her presence andour connection, and it was so.
She taught me so much, but sheled me to the understanding that
, in fact, our entire family isautistic.
(04:43):
We're all autistic.
And so, at 33, I sat in theoffice of a psychologist who
said you are autistic, christy,and I cried and she said why the
tears?
And I said well, it's a mixtureof grief and relief.
(05:05):
Grief that I've spent my entirelife up until that point
fighting so hard in the pursuitof being someone I was never
supposed to be, and relief thatI didn't have to do that anymore
and instead I could explore theidentity and culture that came
(05:29):
with being an autistic personfor me and what that looked like
for me, and whether somethingwas dysfunctional or a different
culture, a different way ofbeing in the world.
And so, from there movingforward, things changed and I
guess, along the way, we'relearning for all of our lives,
(05:50):
aren't we so?
Speaker 1 (05:53):
did you find that you could put everything in its
place once you had that chatwith the psychologist, Did
everything sort of fall intoplace?
You know your past life visionsor images.
Speaker 2 (06:10):
I wouldn't say the psychologist got me there,
though, because I think thereare wonderful, wonderful
professionals and serviceproviders, but I worked in the
field and I didn't know anybetter.
I was supporting families withautistic children and I didn't
realize I was autistic, or myown children were, so I think
that was really reflective ofthe professional development on
(06:33):
offer and the training that wewere having.
I was a qualified educator aswell, so what I thought I knew
about neurodivergence wasn'thitting the mark, because I was
looking at a medical, pathologyperspective rather than the
human perspective, and so ittook a lot and I think it
(06:55):
continues to take a lot forpeople to let go of everything
we think we know in order to beopen to a new experience, and a
large part of that, for me, hasbeen really challenging my
perceptions of reality aroundwho human beings are supposed to
(07:16):
be, and being a woman,identifying as a woman and
having that social and culturalconditioning to be a caretaker
and to push through burnout andto be the person that resources
everyone else in the family anddoes all the learning and does
all the everything undoing that,undoing all the roles that I'd
(07:42):
taken on as a high-maskingautistic person picking up along
the way in childhood.
Well, okay, I'm a female, thisis how I'm supposed to present
and speak, and this is what Ishould be interested in and this
is how I should dress.
That's just one identity,that's just one part of who I am
(08:03):
.
So, really, looking at all theparts of me, even the parts I
rejected and resisted and going,but really what does it mean
for me and what does it feellike for me?
And that can be reallychallenging and scary in the
world we live in.
That continues to reinforcestereotypes and behaviorism, I
(08:28):
guess.
So yeah, things made sense, butit's a continual path.
Speaker 1 (08:34):
And I've worked with so many parents with their
children and you know they'vecome from the medical model.
So you know, oh my goodness, mychild's autistic.
And then there's grief, andthen there's suffering, and then
there's trying to put thatchild into a position where
they're going to be quote,unquote, normal, whatever.
(08:56):
That is, as you say,neurotypical.
Um, what could you?
and often I see some of theparents that I've worked with, I
I think they're neurodivergentthemselves, but they don't
realise they're neurodivergent,right, because it's almost like
a blind spot and you know I'vegot this thing about perception
(09:16):
is projection.
It keeps coming back in my mindover and over and it's almost
like they're trying to.
Maybe they felt like theydidn't belong in their childhood
.
Maybe they felt like they hadchallenges in their childhood.
They don't want their child togo through it and so they're
trying to normalize their childso their child doesn't have, you
(09:39):
know, they don't have to suffer, as they've've told me, the way
they have.
Could you talk to that please,and what?
Speaker 2 (09:51):
would you say Christy ?
Speaker 1 (09:51):
to those parents.
Speaker 2 (09:54):
I love that human model rather than the medical
model, love it.
What you've just outlined is Ifeel like this is the heart of
where I work from with families,because we still think that
neurodivergence is a medicaldisorder.
And how could we not think thatIf you're exposed to the world,
(10:15):
then that's the first narrativethat we have access to when we
don't know better or when we'renew to a human experience, as in
having children who areidentified autistic or you know,
being closer to autism or ADHDor whatever it is, and what
(10:35):
you've just outlined about theparent experience is so
important.
This is grassroots,foundational work, because I
know this might be controversialto say, but I'm not even sure
that I've ever met a parent ofan autistic child that was not
autistic, because for me it'slike saying, well, I have
(10:59):
Scottish roots or I have brownhair, I'm autistic.
And it's not just a childrocking in a corner, as Canna
would have us believe, from 1943.
We're learning more and moreabout this, but almost every
(11:19):
parent of an autistic child thatI've come into contact with
will be questioning that aboutthemselves.
Yet it often begins with but Ihave trauma, but I have a
background of trauma.
My father was an alcoholic.
My mother had maybe somediagnosis of a mental health
(11:41):
condition and that informationright there is culture that is
unidentified neurodivergence,intergenerationally, alcoholism
to cope with being different,misdiagnosis sometimes, and
sometimes dual, or not knowingthat we're autistic but being
(12:03):
diagnosed with manic depressionor whatever it is.
Those are really importantclues right there that we grew
up during a time where no onehad a clue what autism was.
So how could we know whetherwe're autistic or not?
And nobody is exempt frombehaviorism.
(12:24):
Nobody that lives in this worldis exempt from feeling the
pressure from society to show upin a certain way.
We all mask to a degree, butwhen you're a parent of an
autistic child, it is verycommon and very normal and very
(12:46):
easy.
The first part of my journey wasidentifying things in my now
26-year-old who was my firstchild, and panicking about it
and constantly trying to controlher behavior.
I didn't know she was autistic,but I thought, oh my God,
they've learned things from me.
(13:07):
I'm so messed up.
They're anxious because I'manxious.
Oh, I can't let them.
Don't talk like that, don'tdress like that, don't look at
people like that, constantcomments about what's acceptable
and what's not.
Now, that's conditioning, thatis trauma as well, and so I was
(13:28):
projecting onto my children myown trauma, thinking I would
protect them from being exposedto the things that I was as a
vulnerable little girl and youngwoman.
But in in turn, I harmed themmore than I could have imagined
anybody else would.
And even that, that's not theworst thing in the world.
(13:53):
We get to make amends and weget to recover and we get to
reconnect and we get to hashthat out together.
But that is so common as parents, when we don't know that, it's
okay to extend to ourselves thesame compassion that we extend
to our children when we knowthey're autistic.
(14:13):
Because if we're seeing thingsin our children that we relate
to, like I remember I would lookat my non-speaking daughter and
think I know why she's liningthose up.
Oh, that's so satisfyingwatching her do that.
I know why she's doing that.
I can't explain it, but I justI get it.
You know there were so manythings like that.
(14:34):
Those are clues, they're allclues.
So, yeah, I think it's reallyimportant for us to, slowly and
gently and sometimes it'simportant to seek support for
this be willing to visit theidea of going within and
(14:59):
addressing the unseen and theunheard and the unknown, because
we've been taught to pack itdown, especially when we're
parenting.
Pack it down, put it asideaside.
Put it away, show up for others, be in your carer role, and
that will only get us so farbefore we burn out and then we
won't have a choice about whatwe're unpacking, because it will
spill over.
Speaker 1 (15:18):
So yeah, and, as you're speaking, I'm reflecting
on some of the parents that I'veworked with, because I've
worked in a very relationshipbased approach.
That's where I work from andyou know parents come in and
they say I don't get play.
(15:40):
Why?
Why are we doing play?
We need to be doing cards.
You and I think, yeah, that'sthere.
You know, and and that's theother thing that I keep thinking
of about the approaches thatthe approaches to support that
parents choose for theirchildren, it's not so much about
their children, it's about them.
(16:01):
So if we're looking at thebehaviouralist approach I'm not
going to have a debate on thattoday, yes or no but if we're
looking at the behaviouralistapproach, where it's very
structured and the child may bestruggling in that approach, but
the parent, like you said, whenthe child's lining up the cars
(16:22):
and saying, oh, that's sosatisfying, that's so satisfying
, that is very satisfying forthe parent, because the parent
feels like they understand it,they're in control.
Their child may not be, it maynot be helpful developmentally
for their child, but for theparent it is, and often it's
about calming the parent so theycan be there and present for
(16:44):
their child, don't you agree?
Speaker 2 (16:47):
I would definitely disagree with whether it's
developmentally appropriate.
It is absolutely helpful for anautistic child to be allowed to
play in a way that isappropriate for autistic culture
.
And this is one of the thingswe misunderstand we're not
neurotypical, we're autistic.
So we wouldn't take, say, aJapanese person and say, well,
(17:10):
you're not speaking correctlybecause you're not speaking
English.
We wouldn't take someone who isEnglish speaking and say, well,
you're not speaking rightbecause you're not speaking
Japanese.
What are you doing?
Well, you're not eatingJapanese food.
What are you doing?
And our response would be, well, I'm not Japanese, I'm
Australian and I enjoy Japanesefood and I'm happy for you to
(17:33):
show me it and I'll definitelyjoin you in that, but I'm not
Japanese.
Or they might say, well, I'mnot Australian and this is my
culture, which is important tomy identity and normalizing who
I am without shaming.
So autistic play is appropriateand when we are.
(17:55):
We had a support worker whoactually said to me one day
Christy, I don't know how to dowhat you're asking me to do with
one of my children, and I saidI'm not asking you to do what
you're asking me to do with oneof my children.
And I said I'm not asking youto do anything.
Just spend time and hang outand game with them and go and
have fun and access community.
And she said all of the otherfamilies I work with have me
(18:18):
playing games to practiceturn-taking.
They have me using flashcardsfor social skills taking.
They have me using flashcardsfor social skills and I get it
because I was doing that with mychildren for a really long time
and I get it.
We want to avoid pain for ourchildren.
We want them to haverelationships and we want them
(18:40):
to be happy and functional,whatever that means, and we're
convinced that if they'reautistic, they won't access
those things.
But I said to this girl, who isjust incredible we're not
typical people.
Our social skills are fine.
There are studies, there isresearch that will show you that
(19:04):
autistic people together weunderstand each other because
this is our culture.
This is how we talk.
We info dump, we line things up, we talk at each other, we talk
about trauma and we go deep.
Quick Play is better thanflashcards for a lot of us
because it provides relationalsafety, helps me to know you and
(19:28):
help me to trust you.
It helps me to develop and honemy interpersonal skills and all
the very things you want me tolearn about I can access through
play, but it was hard for herto undo that conditioning around
.
Well, I need to be puttingflashcards in an autistic
(19:49):
child's face to kind of get themto understand that this is how
we greet people and no, theycan't not say thank you.
We have to get them doing that.
When we start out with anautistic child, and that's what
we're doing from as early as wedo, what is the message that
(20:10):
we're giving them?
Is it we love and accept you asyou are, or is it we love and
accept you conditionally andwe're going to try and change
the way you relate to the worldand engage with the world?
Now, I'm not saying that from aplace of wanting to make people
wrong, because I absolutelyempathize and understand as a
(20:34):
parent myself.
But these ideas around havingto do everything in life in such
a structured way, having chartsfor everything if it's helpful,
wonderful, but it's also justbecause the word autism is
(20:59):
attached to a child, it alsodoesn't mean they have to have
all these therapies and allthese things in their lives
because they're autistic.
We're individual human beingsand we're all different.
So play is safe and it's great,but I'm going to be the first
(21:22):
to put my hand up and say Idon't love play as a parent.
I don't.
I don't love play as a parent,so we do it in a way that I
sneakily meet my needs as well.
Speaker 1 (21:36):
Yeah, and play's not easy, Christy.
Even for myself as a speechpathologist it's not easy.
Myself as a speech pathologistit's not easy and I think that's
why I found it really difficultto do traditional speech
pathology, because I found itreally hard to do, like I
(21:57):
remember when I set up ourpractice.
We had no tables at thepractice, we had sensory motor.
We had just fun, fun, funthings and people you know, the
kids would call it the fun house, the play house, and parents
would be like what are we doinghere, what are you teaching them
?
And I said relationship, yes,longing.
Speaker 2 (22:18):
Yeah.
Speaker 1 (22:19):
Like letting their guard down.
Speaker 2 (22:21):
Yeah.
Speaker 1 (22:21):
Because they've had this whole day at school with
their guard up, with theirmasking.
They go out into community.
They're with the grandparents,they've got to say thank you,
they've got to say please,they've got to you know, and
then, when they're in anenvironment where they can be
themselves, that's what I wantfor these kids.
Speaker 2 (22:42):
I can't resist that.
Speaker 1 (22:44):
That's how that is their identity.
But it's really about still,it's very early days, I think,
in this, in this world of theway we are, because even the
education system is not likethat.
So, yeah, we won't go there,but um.
So I think it's just reallyimportant and that's why I want
(23:07):
to interview people likeyourself.
You know, the message toparents is it's okay for your
child to be who they are.
It is essential for your childto be who they are because they
are part of the beautifultapestry that makes our world
right.
Mm-hmm.
Speaker 2 (23:30):
But it's so much more than that too.
It's like, um, you were sayingour children, they're masking to
be at everything.
When you're autistic,everything has a cost
energetically, physically,spiritually, mentally Everything
has a cost.
So when we choose to do thingsthat bring us joy, we need
(23:51):
recovery from that.
And what we're not talking tofamilies about is autistic
burnout, co-occurringinflammatory-induced conditions
from prolonged chronic stressthat's showing up in more and
more autistic children Cannot goto school because of burnout,
cannot access community becauseof chronic anxiety, and I think
(24:16):
what we're missing here isletting families know being
autistic means we have acompletely different
neurobiology.
We have a different nervoussystem, so whilst we can do
those things, the disability isfluctuating.
So in one moment we might befine to go to school or go out
(24:38):
in the community or go to asupermarket or be practicing
social skills or whatever it is,and then we might be in bed for
three days after because weneed recovery time.
And the more we push and pushand push the way that we're
often encouraged to in therapy,therapeutic approaches in any
(25:02):
way, we might actually befast-tracking our children into
burnout.
And coming back from burnout inchildhood is very hard because
it means our trust has oftenbeen depleted.
It means we're internalizing.
Well, where is the space in theworld for me?
Where do I fit?
(25:23):
Because everywhere I turn,someone's trying to mold me into
something.
So the fact that you have thosespaces for those children to be
and to move their bodiesbecause we need that and to play
and to stim, stimming is soimportant.
But it can be embarrassing forfamilies because of our fears
(25:45):
about how our children will bereceived by others.
But stimming regulates ournervous system.
There's so much informationabout us.
Speaker 1 (25:56):
It's soothing.
Right, it's soothing.
Speaker 2 (26:00):
Absolutely, and I think you know when we go to
work, if we're in a workplaceall day.
I know as a mum, when I was ateacher, when I was in social
work, whatever, whatever we'redoing, I couldn't wait to get
home at the end of the day, ripmy bra off, put my slippers on,
(26:21):
you know, get out some comfortfood, all of that stuff we do.
If, if we can take thatexperience and transfer it to
our children for a moment, goingto school all day, we might
have fun.
Yeah, we might love connectingwith our friends.
I used to enjoy going to work.
I had some great workmates.
We'd have laughs, but there'snothing, nothing like getting
(26:45):
home and having the space andthe freedom to be who you are,
without judgment, withoutcriticism.
You feel like you can breathe.
Our children must have that aswell.
It's a basic human need andright.
They come home from school andwe're straight into flashcards
(27:09):
and therapeutic approaches andthe belief that the more we do
of that, the more normal oradaptive they will be.
We don't realize we could bepushing them into burnout and a
loss of identity.
Like who am I?
We get into adulthood and oftena lot of us have an identity
crisis because we don't know whowe are or what foods we like,
(27:32):
or we haven't had theopportunity to explore who we
are just as ourselves.
Speaker 1 (27:40):
Because there are lots of structures and
expectations put around foodsand eating and what is normal.
Again, you have to have yourthree veg and you've got to have
this and you've got to havethat, and that's so stressful
and, like you say, that burnout,it's very real.
(28:03):
And I'm just reflecting aboutyou know you mentioning the
autoimmune issues and how manypeople now have autoimmune
issues, and you know people areholding they're just holding
this energy inside them and theycan't be who they are.
And then I think about, youknow, all the extracurricular
(28:27):
activities that children areexposed to.
Well, you know they haven't hadenough at school.
Now they're going to Kumon andthey're going to this and
they're going to that.
And you know, unless the childis definitely interested, if
they're interested in, like, aMinecraft group or a computer
group or piano, whatever it is,it's there coming from their
(28:51):
heart.
But when it's again enforced tobe more academic or catch up on
your work, that would be reallyhard for children too yeah, I
think too that our childrenbring with them an inherent
wisdom.
Speaker 2 (29:07):
They have so much to offer the world that we live in.
Here we are, as adults, doingall this lip service around
decolonizing our work andunpacking all these harmful ways
that we've lived for hundredsof years, and our children show
(29:28):
up with these offerings andthese opportunities to reframe
and to reconsider.
And in our own fear and in ourown trauma because we haven't
unpacked our own stuff, we're soquick to go what?
Oh no, you can't do that.
No, and being in the businessof.
(29:48):
A huge part of what I find I'mdoing now is working with
families recovering theirchildren from burnout, from
really mental health crises thatI never would have expected
children to be experiencing ever, that I never would have
expected children to beexperiencing ever.
But they are, and it's more andmore common amongst
(30:09):
neurodivergent children.
So I'm working with hundreds offamilies to recover their
children and, in that process,recovering families, because
we're only doing what we thinkis right and good and best from
what we're only doing what wethink is right and good and best
from what we're learning, andthen we realize that we've
(30:31):
contributed to harm and I reallyfeel so much compassion for
those families because it's nottheir fault.
It's not.
We're doing what we think isright for our children from a
space of love, and I think theidea is around what's good and
(30:56):
bad, what's right and wrong.
Don't let your children accessscreen for too long.
Like you said, the meat andthree veg Sometimes, when you
are in a situation where it'sabout keeping a child alive,
those things can be put aside.
They have to be put aside.
We have to reprioritize andthis is what we're not teaching
(31:19):
families.
It's okay if your child's noteating three vegetables.
Are they eating?
Are?
Are they fed, because fed isbetter than not?
Are they having glimpses ofhappiness?
Do they have relationships?
Are they allowed to say no andbe heard and is there no honored
(31:40):
?
These are the important thingsabout development for any
children and I just don't thinkthat a lot of autistic families
or people raising autisticchildren have access to know
that people raise their childrenas regular children.
Speaker 1 (31:59):
Christy, how do you know, like if a parent's
listening and they're thinkingabout this, how would they know
what would be some of the signsthat their child is on the path
to burnout?
Speaker 2 (32:12):
a lot of resistance.
I think it depends.
It's so individual, but itdepends on the safety within the
family as well.
Are they allowed to say no ifthey're allowed to say no it If
they're allowed to say no,there's probably going to be
more vocal resistance,exhaustion, not being able to
(32:35):
shower.
But what can be deceptive, Iguess, in presentation is our
children may not say no, theymay just not do it, and we're
taught as adults that we'resupposed to exercise control
here and take the reins, and sowe might be believing that our
(32:57):
children are choosing not to doit because they're trying to
take control.
Yeah, they are trying to takecontrol, but when you're
starting from behind it's notreally control.
They're trying to access equityand they're trying to access
balance.
Speaker 1 (33:12):
And I absolutely, I absolutely hate the word
non-compliant.
I absolutely, and I hear thistime and time again from more
institutional facilities.
You know this child isnon-compliant.
(33:33):
They are non-attentive.
They've got attention deficitdisorder in this space and then
I look at where their interestsare and I'm like they've got
great attention.
It's amazing.
Do you find that, christy?
Speaker 2 (33:55):
I've lived that.
I've lived that.
It makes about as much sense tome now, finally, as saying to
someone well, why are you notpainting like Picasso?
Why?
Well, we have to have a goalfor this and we must put
together a plan.
(34:16):
And that might sound a littlebit extreme, but every human
being has a spiky profile.
We're not all mathematicians,we're not all writers, and the
thing about being neurodivergentis we have creative brains.
We definitely find differentways of doing things because we
(34:39):
are divergent in nature.
So the word noncompliant thatspeaks volumes to me about the
people using it.
It gives us more informationabout them than it does the
child.
Really.
It reminds me of the society welive in and there is a lot of
really great change happening.
(35:00):
But non-compliance ordisability, non-compliance or
disability, noncompliance ordivergence, noncompliance or
support requirement I mean,imagine if we felt so unwell as
adults.
Imagine if we felt so unwellthat we couldn't get ourselves
(35:23):
out of bed to the shower onemorning and we have a team of
people come in, no, come on up.
You get.
No, come on, we've got yourclothes for you.
You should have done thatthough.
We know you can, but here'syour clothes, we've run the
shower off you go.
This is what we're being taughtto do to our children.
Now, children don't have theability always to communicate
(35:48):
their internalized experiencebecause they don't yet have the
insight to understand it forthemselves.
So we're making biasedjudgments based on their
external presentation.
And the ironic thing there is,if we're teaching autistic
children to mask, that's whatthey're going to do.
They're going to pretendthey're okay when they're not,
(36:09):
and so then we have thisconfusion around.
Well, why aren't they going toschool?
Why aren't they getting in theshower?
Why are they having toiletingaccidents?
They were toilet trained before.
These are all signs of burnoutand or leading into trauma,
because if you can't accesssafety, if you can't be allowed
to rest and we need a lot ofrest and a lot of downtime our
(36:34):
brain is constantly switched on,processing and making sense of
all the sensory input.
If we can't have a break fromthat, it's very dangerous, very
dangerous.
So when a child can't make itto the shower and I've been
through this with all of mychildren it's us that needs to
(36:57):
do the work on what ourresistance is about.
What am I really afraid of here?
What's really going on for me?
And I think that's moreimportant than anything.
Speaker 1 (37:10):
I think it's also the same for toothbrushing.
Right, you know, whether it'sshowering, it's toothbrushing,
it's having a haircut, becausethere will be times that the
child can do it when they're inthe just right place, when
they're ready to do it.
But I just love the way youtalked about masking and that we
(37:33):
are.
We are teaching children how tomask, because the other thing
is, christy, we as adults havelearnt to mask.
How many adults in our societycan be who they truly are?
Not many.
It really takes a lot of gutsto be who you truly are.
That's a great analogy.
(37:57):
The other thing I wanted to askyou about I read that on your
website, intune Pathways, youwrote that Intune Pathways is
passionate about radicalacceptance and the celebration
of neurodivergence.
I would love to know.
(38:18):
I know you've touched on it now, but I love that word radical
acceptance.
I love that phrase.
It's not a word, it's a phrase.
Could you just tell me whatthat is in Christy words radical
acceptance?
Speaker 2 (38:34):
It's definitely not what it's often understood as by
probably the cohort of familieswe're talking about a lot today
, and that is when people hearthe term radical acceptance.
I've often been criticizedbecause people think I'm saying
just accept whatever behavior isgoing on for your children.
(38:54):
It's not that at all.
It's not about behavior at all.
It's got nothing to do withthat.
It's about the humility to beable to say and know and
understand that every humanbeing is created not by mistake
(39:18):
and to radically meaning what Isaid before putting aside
everything we think we know inorder to be open to a new
experience or understanding.
I used to be an educator whodidn't believe in ADHD.
I used to think that thesechildren were just engaging with
(39:44):
unruly behaviour because theywere attention-seeking.
And now I think, even if achild is what we term as
attention-seeking, so what?
There's a reason for that.
It's reframing everything wethink we know and understanding
that there's no, instead ofseeing things as good or bad,
(40:10):
right or wrong, normal, abnormal, order versus disorder,
understanding that we are allworthy of being accepted just as
we are.
There's a difference betweenrequiring support and needing to
completely change who we arejust because we're told we're
(40:34):
disordered, and radicalacceptance is accepting in this
moment, just in this moment,what's happening for my child or
myself and instead of fightingevery single moment, resisting
(40:56):
every single moment, fightingwhat is causing ourselves more
stress and pain and our childrento be further and further away
from being connected to us asparents.
It's about having a curiousmind, you know, coming at things
(41:16):
and asking more questions thanprojecting more assumptions.
Speaker 1 (41:22):
Radical acceptance oh , I love that asking more
questions.
I because radical acceptance tome is the feeling of all
encompassing.
When I think about it, I justthink about my whole, because
people can't see me now, butit's like my whole chest opens
(41:42):
up and my arms embrace.
You know, that is radicalacceptance to me.
It's not spiky, it's notpinpointed, it's just because
it's a we have to.
It's desperate because thesedays everything is so, I feel,
(42:03):
is so structured, it's so judged.
You know, I can see kids thatare even so-called neurotypical
but are having burnout over andover because our society is made
that way.
You know, we are a society thathas got high expectations, high
(42:27):
goals.
This is what we need and evenlike with the NDIS, which I love
, the NDIS because of what ithas given our society and at
least it's put people who areneurodivergent and other people
who have neuroabilities,different abilities, in the
(42:52):
picture.
But I feel that you know all ofthat, the goals, the goals
around fixing the child, youknow, when I look at the goals
that we have and so again, itperpetuates the parents mindset
and perception, because theculture is like that.
(43:15):
It's not about, oh, that littlej, little Jimmy, will have a
happy life, or that little Jimmywill find himself you know,
it's more around that littleJimmy will be able to say two
words in, or little Jimmy willbe able to turn, take in a
social interaction.
But nobody's really thinkingabout little Jimmy as the
(43:39):
neurodivergent, uniqueindividual that he is.
They're thinking about what weexpect.
Do you find that?
Speaker 2 (43:48):
This is where I am so grateful that I am a big
picture thinker, which you know,textbooks on autism would have
you think.
The opposite to that, I'd sayI'd get wrapped up in details
and I can.
But being a big picture thinkermeans that anytime I ever have
(44:10):
to make a big decision or I'mweighing up what's important for
my kids, for me, I think in mylast moments of being on this
being a part of this, you know,experience of living now and
being on earth and being alivewill I be laying on my deathbed
(44:30):
thinking at least I got littleJimmy to speak two words before
April, the 21st in 1998.
That's what matters, you know.
Are we going to be laying thiswith our children or together,
going now?
There's something I want you toremember, little Jennifer,
(44:50):
after I'm gone Make sure whenyou're raising your children,
let them know that Nana wantsthem to always remember.
Goals about literacy andnumeracy are most important, or?
You know, I read it breaks myheart.
I had a family show me theirplan because they were asking
(45:12):
can I fit one of your programsin?
And we often say, if you needhelp, we're happy to help.
And and the goals on there were.
One of them in particular wasthe child will learn to overcome
difficulties with transitionsand perform them successfully,
perform overcoming transitions.
(45:35):
Now I'm 45 years old and I am.
I'm still autistic, believe itor not.
Haven't, haven't grown out ofit, didn't didn't run away
somewhere.
I will always struggle withtransitions because my brain is
accustomed to routinepredictability, and that's what
makes me feel safe, but I knowwhen something's going to be
(45:59):
different.
The information I need tosupport me is you have an
autistic brain, christy, and sowhat might happen is you need to
give yourself time to get usedto the sensory input so it feels
less threatening, so it's notas scary, and this will happen
over time instead of absolutelyno, you cannot have five more
minutes to play with the blocksbecause it's not as scary and
(46:19):
this will happen over timeInstead of absolutely no, you
cannot have five more minutes toplay with the blocks because
it's time to do this and youmust do it now.
Where's the safety?
How are we really supportingchildren there?
I'm going on a bit of a rant.
I'm going all over the place,oh no.
Speaker 1 (46:32):
You're a woman after my own heart.
I am smiling from ear to earand I just think, oh only
smiling from ear to ear, and Ijust think, oh only if I had met
you earlier, christy, and and Ijust feel so blessed that you
know we're having thisconversation, because I think
you know you are so right.
We need and I'm I'm a bigpicture thinker as well and I
(46:54):
always ask questions as to why.
What's the purpose of that?
Who is this serving?
What you know we've got allthis money.
You know like the ndis is a lotof money, and what are we
really investing in?
You know we're investing inthese, these children, some of
the children you know on this,um, what are they called?
(47:15):
The?
The circle that the mice runaround and around, that they've
got to do all these therapies,to do this, this and that,
rather than because I would love.
I would love that more money isinvested in parents, because
when we invest in the parents,I've seen it myself through.
You know the training and thecoaching and the support I give
(47:37):
parents.
When parents are okay and theyfeel like they can stand for
themselves, they can advocatefor themselves, then they can
advocate for their children.
They're like the pillars of thechildren's development.
So, you know, at the momentthat's still not.
I think it's coming.
(47:57):
More and more people arerealising that the parents are
the ones that need support.
And you know, like we alwayssay, it's about the oxygen mask.
Put the oxygen mask on yourselffirst and then, you know, help
your child.
But yeah, it's really, reallyinteresting.
Speaker 2 (48:14):
The oxygen, though, isn't it?
I mean, where's the oxygencoming from, exactly?
Speaker 1 (48:19):
Yeah, as long as it's not carbon dioxide, Anyway,
we're not going to go there.
That's my quirky sense ofhumour.
Okay, so I just want to justquickly touch on I know there's
no such thing as quickly.
I want to quickly touch on PDA.
(48:39):
And is it recognised inAustralia?
And if not, why not?
Why not yet?
Speaker 2 (48:47):
It's definitely recognised by some people.
It's not a diagnosis.
Usually it would be added to anassessment for autism.
So it might be autism withextreme anxiety.
It might be autism with demandavoidance.
People use different language.
It depends on who you're asking.
(49:09):
Is it recognized?
A lot of people will say it is.
I mean, it's one of the mostchallenging profiles to believe
because of its presentation,which is someone who just says
no, a child that just says no,I'm not doing that.
Very wise, switched on,connected children who know
(49:31):
themselves.
But what an incredible way tocome into the world, but what an
incredibly painful way ifeveryone around you says you're
wrong and you know you can't sayno.
So it's recognized by thefamilies and a lot of
professionals.
Often those professionals havepersonal experience as well,
though, and it's undeniable.
(49:51):
I think it's finding communityand and the pockets of that
we'll be able to support.
Speaker 1 (50:01):
How would a parent know if they've got PDA?
What would be some of thetelltale signs?
They have it themselves.
Yes, the parents.
Speaker 2 (50:11):
Yeah, that's hard because there's so much overlap.
I mean, you cannot be PDA ifyou're not autistic.
That's what research currentlystates, right, but then we don't
even know enough about autism.
Lots of adults walking aroundnot thinking they're autistic.
When they are PDA, you mightstruggle to be able to do things
(50:32):
you want to do and you mighthave reasons for that.
You might think that it'sexecutive functioning.
You might think, well, I'm ADHDbecause that's more socially
acceptable.
For some reason, pop culture,whatever it is, I don't know I'm
ADHD as well and it can be verydebilitating.
But a lot of people I meet willsay, well, my child's PDA, but
(50:54):
I'm not.
I have trauma and ADHD.
Okay, cool.
When you have a conversationwith an adult with PDA, often
they'll cover all bases, so youdon't get an opportunity to make
them wrong or give themunsolicited advice or give them
a recommendation, unless theyask If you are an adult and
(51:16):
you're questioning whetheryou're your PDA, I would always
recommend paying attention tothe feeling that you experience
when someone gives you adviceyou don't ask for.
When someone tells you you haveto do something could be
something as innocuous as payinga bill.
Do you struggle to pay bills?
(51:37):
But you, financially can do youstruggle to pay bills, but you
financially can Do you struggleto brush your own teeth or get
to the shower, but you're not inburnout and you don't
necessarily have executivefunctioning challenges.
I think it's really a processof unpacking.
Why am I struggling to do thisthing?
What do I feel when people giveme advice?
(51:59):
That's the biggest one for meIf someone says, well, what you
need to do, praise.
How do you feel about praisewhen someone pays you
compliments?
Yeah, because often we'll beaware of those things, but the
(52:19):
world has provided differentreasoning for it.
Oh, it's just my ego, or oh,it's pride?
It may not be.
Because a PDA actually, nomatter how we present, we have a
drive to be like this withpeople, places and things and us
being above is just asuncomfortable as a loss of
(52:42):
autonomy so you, you pda, islike to be um equal, but not
above or below yeah, yeah,people think we're trying to be
above, but what that is about is, if we feel below, we're going
to behave in a way especiallychildren that compensates for
(53:03):
being down here.
So I always provide this imagewith my hands holding them
together, to show us being equalwith people, places and things.
Because if someone says, allright now you got to go and
brush your teeth, then I'm downhere, I'm below.
There's a power imbalance, aperceived, and it's separate
(53:24):
from our consciousness.
We don't go.
Oh, you're trying to.
There's, there's a powerimbalance.
Like a two-year old isn't goingto say, oh, I'm sensing, my
nervous system is sensing apower imbalance.
Right now they're going tothrow something at you.
Yes, yeah, sibling, targettheir sibling, because that is
compensating for perceived powerimbalance.
(53:48):
It's very complex, but it'svery real.
Yeah.
Speaker 1 (53:59):
Just finishing off today, christy, what would be
three recommendations you couldgive parents that are struggling
with their, I guess,understanding where their
child's at, being really worriedabout their child's future?
Because being really worriedabout their child's future
(54:20):
because they might be listeningto this and go yeah, but the
school wants this and grandmawants this and I need them to be
going to university.
What's going to happen?
Oh my gosh, I'm not a goodparent.
You know, what could you say tosomeone like that?
What would be your words ofwisdom?
Speaker 2 (54:38):
Well, if we're trying to have our children become
less anxious, we're notmodelling that.
First of all, because if we'reliving in the future of what
will become of them or us, orwhat's going to happen, we're
completely escaping the now andall we have is the now.
So I would say to parents themost helpful, most practical
(54:59):
thing that we can do is accesslived experience community.
There are autistic adults whoare ready and willing to connect
with you, to welcome you withopen arms, to share their lived
experience, so you can reframe,so you can ask questions.
(55:21):
The other thing I would say is,if you like making a list, like
I love a good list.
How good is a good list really?
I've got one here.
I've got a thousand.
I love making a good list, butGod knows where it ends up.
(55:42):
I find them years later inboxes and drawers.
It's the ADHD I know.
When I say, if you like makinga list, I'm speaking to probably
98% of the parents, if theirchildren are not neurodivergent.
I used to do something as simpleas writing down what's
disturbing me and being brutallyhonest with myself.
(56:04):
What am I really worried about?
And one of mine was my childwill end up in residential care
in the future, like I've got bigstuff out there in the ether
and reminding myself you knowwhat, as much as I see a lot of
painful stuff in the world,there are also the most
(56:25):
beautiful, incredible, wonderfulhumans that exist, and the
world is changing all the time,and I can control what's within
my control.
Control what's within mycontrol and I can't do anything
more than that.
If something's bothering me ona daily basis, like getting my
(56:46):
child to school by 9am, what amI so worried about with that?
Why can't we have anarrangement where I actually
share with the school?
Well, this is hard for my child.
It would make our lives easierif we could get there when we
get there, and if they're notokay with that that's not our
stuff to worry about.
That's not, and I understandprivilege and I understand that
(57:11):
sometimes we are under a lot ofpressure with that stuff, but
it's prioritizing, like what?
What really is important?
Can we find advocates tosupport us to fight for our
needs and our children's?
Because when we take away ourown stress, when we relieve the
pressure we feel, ourrelationship with our children
(57:33):
does a 180.
I mean, a lot of this stuff isabout the stress we are living
with.
So accessing a differentnarrative and finding spaces
where we have a sense ofbelonging, that is, safe, and
accessing support for ourselvesmost important things.
Speaker 1 (57:56):
Christy Forbes.
I loved this conversation.
I am just my heart isfluttering.
I'm hoping that we could havemore conversations about stuff
any stuff in the future, becauseI think it's so important for
parents to have theseperceptions, have these words
(58:25):
that come in, because there's somany that are not like that.
You know, this is like it'scoming more and more, but we
also understand that we live ina society that is quite far from
what we were talking abouttoday.
So thank you so much for comingon the podcast and you are a
(58:49):
beacon of wisdom and hope andjust so refreshing for so many
people.
I know for me and it justvalidates to know what I'm doing
is on the right path and I knowthat other people are.
The people that are workingthis way are definitely on the
(59:11):
right path and we just need moreand more people um, doing that.
What's really interesting?
I'm just gonna, um, let thelisteners know I'm looking at
Christy.
She's in her car and there'slittle saplings that are planted
at the back there of trees andthat, to me, is so symbolic
(59:32):
because it's like we haveplanted these little ideas and
those little saplings are goingto grow to be beautiful big
trees for our environment.
So, yeah, can.
Speaker 2 (59:45):
I add to that.
Speaker 1 (59:46):
Yes, definitely.
Speaker 2 (59:48):
On the other side is a cliff edge.
Speaker 1 (59:54):
That's where you're looking.
I'm looking at the saplings.
Speaker 2 (59:57):
There's two pathways.
We can stand on the edge of thecliff and hope we don't fall
off it and feel like we're stuck, or we can plant seeds to um
move into a new pathway, a newnarrative you know, yeah, and I
I love the work you're doing andthank you so much for for
today's conversation thank you,thank, thank you so much.
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