Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Kiota.
Speaker 2 (00:06):
I'm Chelsea Daniels and this is the Front Page, a
daily podcast presented by.
Speaker 1 (00:11):
The New Zealand Herald.
Speaker 2 (00:16):
US doctors will soon be advised not to prescribe paracetamol
to pregnant women after President Donald Trump claimed an increased
autism risk. He cited the unproven link as a major
factor in the rise of diagnoses. The call has been
criticized worldwide, with ministries of health globally moving to put
(00:39):
out the flames. Experts have labeled the rhetoric as quite
scary and really damaging. Today on the Front Page, University
of Otago pediatrics and Child health science officer Joanne Dacom
is with us to dive into how comments like this
affect autistics and their families. Let's start with an easy one.
(01:05):
Can you tell me what autism is?
Speaker 3 (01:08):
Essentially, it's a neuro developmental condition that impact are on
people's ability to have social communication, to have interactions with
others and have and also impact how they live in
the world. Do you know if they have sensory issues.
You know, a lot of autistic people will have a
lot to contend with with just fitting into the world generally.
(01:33):
But essentially it's considered a communication disorder, and I really
hate that word disorder because you know, it's it's just
a different way of being.
Speaker 2 (01:44):
So what would be the proper term to refer to
autism as a condition or a person with autism?
Speaker 3 (01:51):
Well, really it's up to them how they want to identify. I,
myself and many of the people in my community for
autistic people rather than people with autism, because we consider
it an es central part of who we are. It's
not a separate thing that we carry around with us
or that can be sort of sliced off from us.
(02:13):
So we go with identity first. Language Like the deaf community.
Speaker 2 (02:18):
Autism doesn't always manifest in the same way though, right,
I mean you often hear about it as a spectrum.
Speaker 3 (02:24):
Correct, So there is a spectrum, and it not necessarily
sort of linear, which a lot of people assume. I identifink
there's sprinter skills. So some people might have really high
ability in terms of academics but have really poor social skills.
Or some people may be able to recite a lot
of knowledge but yet not be able to do small talk,
(02:49):
for example. So it is a it is a spectrum
that it's more like a color wheel where you can
have different sites, different sort of percent to jet across it,
if you like pie Chat or color wheel, about where
you might where your skills might lie. And that's why
it's so vastly different from one autistic person to another.
Speaker 2 (03:11):
And I guess that's why it would be frustrating to
have I don't know, the President of the United States
call it something that's wrong or that needs to be fixed.
Speaker 1 (03:21):
I mean, how did you.
Speaker 2 (03:22):
First feel when you heard something like what Donald Trump said?
Speaker 3 (03:29):
Well, you know, like because I am autistic, you know,
it's really tiring have to justify my existence, you know.
Trump announcement with a painful reminder for myself and many
other autistics of how autistic people are often shamed and
painted as a tragedy or a burden, you know, but
really we just simply experienced a natural variation of the
(03:52):
human condition. And I guess we feel like we have
to defend ourselves for the right to exist. And because
some parts of the world are on people like Trump
think that autism should be eradicated because we've seen it
a problem, you know, that we need to be solved
to exploring quarters and treatment, and basically he would look
(04:12):
to eliminate.
Speaker 2 (04:14):
It well, and that's the basic fact of the matter,
is that it's not a disease or an epidemic.
Speaker 1 (04:19):
It's a way of being.
Speaker 3 (04:24):
And we're definitely not a disease and we're not a sickness,
and we're not an epidemic, you know. And he fails
to see that, and I guess because he is looking
at only perhaps autistics who have very high and complex needs,
but he's ignoring the fact that many of those people
would have other co occurring conditions that are impacting on
(04:48):
the autism.
Speaker 2 (04:50):
Now, there have been many studies over the years trying
to prove different things. A lot of them blame mothers
and blame medicines and back scenes, et cetera. But it's true,
isn't it that genetics are a primary cause, correct?
Speaker 3 (05:06):
You know? For example, in my family, I'm autistic, my
son is autistic, and his oldest son is also autistic.
So there's definitely a clear genetic are current clear And
that would be the same for many many families where
genetics plays a role. Not necessarily hereditary, but definitely there's
(05:30):
a lot of genetics that come into play. And it's
not just one gene. It's a range of genetic hints
the spectrum, but it's also what happens if you have
cooccurring conditions and how those genes impact on autium as well.
Speaker 2 (05:49):
How do comments and conversations like the ones that came
up when Trump said, you know that Thailand old pregnant
women shouldn't have thailand ol, How does that affect the
autistic community and their families?
Speaker 1 (06:02):
I suppose well, I mean.
Speaker 3 (06:04):
Like I said, I'm also an autentic mother, so of
an autiftic son. So I guess it feels like an
ongoing trend or a resurrection of the trend of mother
blaming that we had in the nineteen fifty we had
refrigerator mothers. Then we've had various things about mothers being
blamed for what they ate or what we did or
(06:25):
didn't do, and bad parenting, and it's all really damaging
for families, and it's really damaging for autistics as well.
And the blame rhetoric is really unhelpful in our day
to day lives. The continent sort of recycling of debunct
myths only feel stigma and harm for autistic people and
(06:46):
their families, you know, And the danger lies in the
ideas that get planted in people's hands and the results
that might occur. You know, some mothers might be plunged
into despair thinking, oh I did that, did this? Thinking
that it has to have a blame and there should
be no blame attached to it. You know, Autism conversations
(07:07):
should instead be about inclusion and support.
Speaker 2 (07:10):
And in terms of inclusion and support, do you think
that there is enough in New Zealand at the moment.
Speaker 3 (07:18):
There's never enough. There's never enough. There's always more that
can be done around inclusion. You know, we need inclusive schools,
we need an inclusive curriculum, we needive inclusive employment opportunities
and practices. We need a range of inclusive support to
(07:39):
really have true inclusion here in New Zealand. So it's
got a way to go. You know, we've started, but
it's going to be a journey.
Speaker 4 (07:54):
The meteoric rise in autism is among the most alarming
public health developments in history.
Speaker 5 (08:00):
There's never been anything like this.
Speaker 4 (08:04):
Just a few decades ago, one in ten thousand children
had autism.
Speaker 5 (08:08):
So that's not a long time.
Speaker 4 (08:10):
And I've always heard, you know, they say a few,
but I think it's a lot less.
Speaker 5 (08:15):
Time than that.
Speaker 4 (08:17):
It used to be one in twenty thousand than one
in ten thousand, and I would say that's probably eighteen
years ago, and now it's one in thirty one.
Speaker 5 (08:29):
But in some areas it's much.
Speaker 4 (08:31):
Worse than that, if you can believe it one in
thirty one.
Speaker 2 (08:36):
What's an example of how something has changed and bettered
that inclusion And can you give me an example of perhaps.
Speaker 1 (08:45):
A thing that needs to change.
Speaker 3 (08:48):
Well, I think about things that have improved. Autism research
in New Zealand used to be done to us, not
with us, and now we have much more what I
would call participatory research where autistics can actually be involved
in research that is about them, and we have partnerships
that help facilitate that. We have a new out of
(09:09):
Kanterby University, there's an auti and Research Center. Now we
autestics are often leading the research as well, so that's
really exciting. So I see that as a really positive
step towards inclusion. Things that school can be done. I
believe while some schools have really inclusive leadership and practices,
(09:30):
there are other schools that have a long way to go.
And I pick on schools only because starting early with
inclusion from even preschool sets the tone for how society
will learn to accept autistics. And if schools don't, if
classrooms aren't, if teachers don't, then that's going to be
(09:52):
mirrored out in society. So that's the only reason I
pick on schools. But there are likely very many other
ex you know, the justice system. Many people who are
encarculated are actually very likely to be autistical. Hey about
I'm your diverse condition.
Speaker 2 (10:08):
And I guess even visibility and understanding as well is
a really important part. I don't know if you've seen
these videos on TikTok and social media, but there's this
trend that says, you know, what kind of autistic are you?
And then it like you add to the video and
people show off what they're interested in.
Speaker 5 (10:30):
However, are artism?
Speaker 2 (10:31):
Did you guys get I got the cone where I
took a part on my accounts while watching more of
the Rings.
Speaker 5 (10:36):
That is such a great question, Messie.
Speaker 3 (10:39):
So I collect bugs and I also watched Tangled every
single day. I also wear the same shoes every day.
Speaker 2 (10:46):
I've got a variety.
Speaker 5 (10:48):
I also hate bugs on rocks.
Speaker 3 (10:52):
I have an obsession with more crickets, have a lot
of more crickets. What crickets.
Speaker 5 (10:58):
I love more crickets. I got the kind where for
my life saving is on shiny rocks. I have the
one where I created an entire language.
Speaker 2 (11:04):
Give it a whole dictionary, grammatical rules and law. I
find those really enjoyable to watch because, you know, it
shows that it's not a problem to be solved, it's
actually a really special.
Speaker 1 (11:22):
Way of looking and thinking and being in the world.
Speaker 3 (11:25):
I think that's really exciting, and that's some of the
changes that we've seen. We've also seen lots of changes
in terms of how we indicate people about autism. For
example that you mentioned TikTok video, where all ticals are
able to articulate for themselves in different ways ways that
suit them, about how they are in the world, how
(11:45):
autratum impacts on them, and they might talk about the
strength that they won't deny the challenges.
Speaker 5 (11:51):
You know.
Speaker 3 (11:51):
So I think that that's really kind of exciting. That's
a really big change. Where before it used to be
organizations talking about us, not necessarily in a very way. Nowadays,
autritive organizations in this country, not necessarily America, but autracive
organizations in this country have come to that slame conclusion.
As yourself, that it's just a different way of being
(12:13):
and how can we support autistics and their families to
grow together on this journey of autism.
Speaker 2 (12:20):
And in terms of what the conversation that's being had
now you've obviously we're been working in the space and
you're autistic yourself. In terms of that cyclical nature of
those myths, you know, constantly coming up and then being debunked,
coming up again being debunked, I mean a must get
(12:40):
really tiring.
Speaker 1 (12:42):
But b over the years, has it gotten any better?
Speaker 3 (12:46):
I think it's got better in this country, but there'll
always be some people that latch onto those ideas and
push them. You sometimes see it in some of the
social media platforms where there are groups and people come
together and the key we often have a much more
positive framing around autism, but some still latch onto the
(13:09):
idea that it's all vaccnes. You know, even though there
have been so many studies that have debunked vaccines called autism,
there are still some I find, particularly probably older people,
still cling to that idea that it was vaccings that
caused their child autism and therefore, you know, vaccines are
to blame, and they latch onto the idea of big
(13:31):
farmer and conspiracy theories along that line. But I'm finding
that the younger generation do not hold to that that
they are very much learning to perhaps even see that
autism is not an actual disability. They just see it
as a different way of being. I still recognize autism
as a disability because it can be disabling. You know,
(13:54):
the societal barriers are still there. It can be hard
to deal with some of the challenges around social censoring sensitivities,
you know, So there are a lot of challenges that
still exist. But I'm really pleased with the framing that
we have in New Zealand, and I think we are
hoping that we won't be unduly influenced by statements made
(14:16):
by Trump and RSK and that's been really happening to
see and I see it also coming out of Australia
as well, that the de bunking things that have come
from the White House.
Speaker 2 (14:28):
And just lastly, Joanne, if you wanted to tell somebody
something about what it's like being autistic, how would you
describe yourself and how would you describe it to someone?
Speaker 1 (14:42):
What's something that you would want them to know.
Speaker 3 (14:44):
I guess for me, personally, autism results in a lot
of masking. You know, I'm always really conscious. I almost
feel like sometimes I still have to justify my existence.
I have to prove myself over and over again, even
though most of the people around me don't expect that.
I still feel like the rest of society is out
(15:07):
there looking for me to be some sort of you have,
some sort of superpower, and I don't regard for me personally,
I don't regard autritum as a superpower. I see that
I have strengths that come with it, but there are
also the challenges, and those challenges are very real. You know.
Fatigued is very real. Co occurring conditions that come with
autra are very real for me. I have often battled depression,
(15:30):
and that's a real challenge in the day to day
living that I have to do. I think that that's
where the supports from society, you know, can really make
a difference, you know, where people are accepted for who
they are.
Speaker 1 (15:45):
Thanks for joining us, Joanne, You very welcome.
Speaker 2 (15:50):
That's it for this episode of the Front Page. You
can read more about today's stories and extensive news coverage
at NSI Herald dot co dot m.
Speaker 1 (16:00):
The Front Page is produced.
Speaker 2 (16:02):
By Jane Yee and Richard Martin, who is also our editor.
Speaker 1 (16:06):
I'm Chelsea Daniels.
Speaker 2 (16:08):
Subscribe to the Front Page on iHeartRadio or wherever you
get your podcasts, and tune in on Monday for another
look behind the headlines.