WEBVTT - Australia’s first-ever autism strategy

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<v Speaker 1>My name is Lily Maddon and I'm a proud Arunda

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<v Speaker 1>Bunjelung Calcottin woman from Gadighal Country. The Daily oz acknowledges

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<v Speaker 1>that this podcast is recorded on the lands of the

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<v Speaker 1>Gadighl people and pays respect to all Aboriginal and Torres

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<v Speaker 1>Strait Island and nations. We pay our respects to the

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<v Speaker 1>first peoples of these countries, both past and present.

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<v Speaker 2>This episode will deal with mental health and suicide. If

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<v Speaker 2>you need help, you can call Lifeline on thirteen eleven fourteen.

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<v Speaker 2>Good morning and welcome to the Daily os. It's Wednesday,

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<v Speaker 2>the sixth of September. I'm Zara Seidler.

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<v Speaker 3>I'm Sam Kazlowski.

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<v Speaker 2>Australia's first ever autism strategy is being developed to try

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<v Speaker 2>improve outcomes for autistic Australians in everything from mental health

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<v Speaker 2>to social inclusion.

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<v Speaker 4>We really want to ensure that all autistic people can

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<v Speaker 4>truly participate socially the community.

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<v Speaker 2>Stick around until the Deep Dive to hear my conversation

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<v Speaker 2>with Andy Shim Andy's a member of the council overseeing

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<v Speaker 2>the new strategy. But before we get to that chat, Sam,

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<v Speaker 2>yesterday was the first Tuesday of the month, which is

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<v Speaker 2>RBA Day.

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<v Speaker 3>That's right, and the RBA decided not to make any

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<v Speaker 3>big moves Yesterday they kept the interest rate on hold

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<v Speaker 3>at four point one percent for the third month in

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<v Speaker 3>a row. This was the last rate decision and RBA

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<v Speaker 3>meeting for outgoing Governor Philip Lowe, who didn't rule out

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<v Speaker 3>future hikes to the cash rate, but he did say

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<v Speaker 3>that inflation had passed its peak. Michelle Bullocks starts as

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<v Speaker 3>the new RBA governor on the eighteenth of September.

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<v Speaker 2>PM Anthony Alberizi is in Indonesia today, kicking off what

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<v Speaker 2>will be a three country diplomatic visit. The PM will

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<v Speaker 2>attend the Asian Summit, which is a meeting of the

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<v Speaker 2>Association of Southeast Asian Nations. For his first stop in Jakata.

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<v Speaker 2>He's expected to meet with other leaders over the next

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<v Speaker 2>two days before heading to the Philippines for talks with

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<v Speaker 2>their president.

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<v Speaker 3>The last of the Aussies have been knocked out of

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<v Speaker 3>the US Opens singles competition. Top ranked Australian men's player

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<v Speaker 3>Alex Demenor made it to the fourth round of the

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<v Speaker 3>Tennis Grand Slam before being knocked out by previous champion

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<v Speaker 3>Daniel Medvedev on Tuesday morning. The men's and women's finals

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<v Speaker 3>will be played over the weekend local time, with the

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<v Speaker 3>competition wrapping up early Monday morning for those of us

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<v Speaker 3>in the AEEST time zone.

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<v Speaker 2>And the good news, Sydney FC has launched a pathway

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<v Speaker 2>to develop and encourage more female footballers to play at

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<v Speaker 2>a professional level. The program will develop footballers aged between

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<v Speaker 2>eleven and sixteen years old and will provide a link

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<v Speaker 2>between community soccer and professional competition. Sydney FC and Matilda's

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<v Speaker 2>World Cup squad forward Courtney Vin said the program would

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<v Speaker 2>provide an enormous benefit to the future of Australian women's football.

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<v Speaker 2>Australia's first ever autism strategy has been released for public

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<v Speaker 2>feedback to help us understand what the strategy is and

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<v Speaker 2>what it will do. I'm joined by disability Right to

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<v Speaker 2>activist and an autistic member of the Council overseeing the

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<v Speaker 2>National Autism Strategy, Andy shim Andy, thank you so much

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<v Speaker 2>for joining us on the podcast.

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<v Speaker 4>Well, thank you for having me. I'm very still honored

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<v Speaker 4>to be here today.

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<v Speaker 2>Let's start at the beginning. I know that you're on

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<v Speaker 2>here today to talk about the strategy but I do

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<v Speaker 2>really just want to take a step back first, and

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<v Speaker 2>I was wondering if you could help us explain in

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<v Speaker 2>your words what autism actually is.

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<v Speaker 4>Well, ah, that's a very big question. There's a lot

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<v Speaker 4>of different ways to describe autism. It's a condition which

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<v Speaker 4>impacts communication and can impact the way that you perceive

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<v Speaker 4>and navigate the world. Being autistic to me means that

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<v Speaker 4>I sometimes miss what other people catch, but then also

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<v Speaker 4>catch what other people miss.

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<v Speaker 2>I'd love to know what you think you catch that

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<v Speaker 2>other people might miss.

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<v Speaker 4>Well, I think for me, I think I have a

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<v Speaker 4>really good eye for detail. But at the same time,

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<v Speaker 4>you know, my sensory sensitivity is specifically, my hearing can

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<v Speaker 4>be really high, so I might have noise caancingly headphones,

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<v Speaker 4>but in in exchange, I might, let's say, notice something

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<v Speaker 4>in a in a picture that other people might have missed.

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<v Speaker 4>And it makes me, you know, a really good asset

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<v Speaker 4>to having an escape room, because I think you know,

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<v Speaker 4>that's what neurodiversity is about, right. I love that diversity

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<v Speaker 4>in skills and thoughts.

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<v Speaker 2>So that is excellent and I will be sure to

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<v Speaker 2>call you next time I am going to an escape room.

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<v Speaker 2>So let's shift gears a bit, and let's talk about

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<v Speaker 2>the National Autism Strategy. Can you tell me what you

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<v Speaker 2>think it is setting out to do?

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<v Speaker 4>So with some context, I'm an autistic person and one

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<v Speaker 4>of the members of the National Autism Strategy Overside Council,

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<v Speaker 4>which is overseeing the National Autism Strategy and the development

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<v Speaker 4>there are, specifically the National Autism Strategy. What we're doing

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<v Speaker 4>is that we are attempting to ensure that policies about

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<v Speaker 4>autistic people are designed by and for autistic people. The

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<v Speaker 4>disability community often says nothing about us without us, which

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<v Speaker 4>is why we've released the discussion paper, and we are

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<v Speaker 4>hoping to solicit and collate feedback from the community directly

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<v Speaker 4>because ultimately, for so long, policies and strategies and discourse,

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<v Speaker 4>whether it's about the NDIS, whether it's about the Disability

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<v Speaker 4>or le Commission, the Disability Discrimination Act, they were those

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<v Speaker 4>conversations were often driven by non autistic people, by neurotypical people,

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<v Speaker 4>and I think it's very important to ensure that the

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<v Speaker 4>voices of the people that are the most impacted by

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<v Speaker 4>the policies are the ones who are then in turn

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<v Speaker 4>driving the policies. I like to think of it like,

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<v Speaker 4>would you want a you know, a group of men

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<v Speaker 4>to be discussing policies about reproductive rights without a single woman.

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<v Speaker 2>In the room.

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<v Speaker 4>No? Does it happen, yes, but we don't want it? No, No,

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<v Speaker 4>we did not exactly.

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<v Speaker 2>So some of the areas that the strategy intends to address,

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<v Speaker 2>and I know that we're only at the discussion paper

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<v Speaker 2>stage so far, but the first one is social inclusion.

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<v Speaker 2>Can you explain to us why that's an area that

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<v Speaker 2>is so high up when it comes to being addressed.

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<v Speaker 4>Absolutely so autistic people. They are experiencing life outcomes regarding

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<v Speaker 4>social exclusion that are disproportionately higher competitian non autistic counterparts.

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<v Speaker 4>Some studies were stating that one in three autistic people,

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<v Speaker 4>for example, were avoiding social situations partially due to fear

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<v Speaker 4>of stigma, own discrimination, and from a social inclusion perspective,

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<v Speaker 4>we really want to ensure that all autistic people can

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<v Speaker 4>truly participate socially in the community. You know, let's put

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<v Speaker 4>it this way, do you really want an escape room

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<v Speaker 4>without someone like me? And there it's really about make

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<v Speaker 4>you know, just asking ourselves, Hey, is everybody who is

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<v Speaker 4>on you know, this particular engagement on this at this

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<v Speaker 4>particular event, at this particular this particular sausage resort. Is

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<v Speaker 4>it actually representative of all of all of the Australian

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<v Speaker 4>population And who are the people who are the most

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<v Speaker 4>excluded by certain structural barriers from socially participating?

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<v Speaker 2>And so that is one of the areas that will

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<v Speaker 2>be focused on. Another, of course, is education and employment. Yes,

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<v Speaker 2>what are some of the challenges that exist in those

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<v Speaker 2>spaces at the moment?

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<v Speaker 4>Thank you for asking. So the reason why I think

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<v Speaker 4>we are really interested to hear about, you know, the

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<v Speaker 4>barriers that preclude economic participation is primarily because, well we

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<v Speaker 4>know from the Disability or Commission as well as the

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<v Speaker 4>Senate Select Community Autism that you know, autistic people are

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<v Speaker 4>disproportionately impacted by bullying, by alienation, by assault, violence, ableism.

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<v Speaker 4>One study reported that three out of four autistic students

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<v Speaker 4>in universities do not even disclose their autism to their

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<v Speaker 4>university out of fear of discrimination. I think you know

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<v Speaker 4>autistic people as well as you know people with disability.

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<v Speaker 4>In general, we are not a liability around which to retrofit.

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<v Speaker 4>We're actually a asset into which to invest. We have

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<v Speaker 4>to look at you know, how people are being excluded

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<v Speaker 4>at workplaces, whether our current employment laws are actually sufficiently

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<v Speaker 4>preventing you know, disability vilification at the workplace. I personally

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<v Speaker 4>have been told, and you know, words that I will

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<v Speaker 4>not repeat on this podcast becausees slurs. Because what I

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<v Speaker 4>will say, though, is that I think there are thousands

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<v Speaker 4>of people who are not as lucky as I am.

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<v Speaker 4>Where at least I was somehow able to find a

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<v Speaker 4>backdoor whenever a front door was closed. But I think

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<v Speaker 4>to myself, how many people are not able to access

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<v Speaker 4>that backdoor or a window let alone, you know, are

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<v Speaker 4>they even in the same building. That's why I think

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<v Speaker 4>education and employment are really fundamental to considering that economic

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<v Speaker 4>conclusion question.

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<v Speaker 2>I want to also talk about diagnosis. I know that

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<v Speaker 2>in the discussion paper there was also some commentary about

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<v Speaker 2>the diagnosis of women and girls. What can you tell

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<v Speaker 2>us about what is needed in this space when it

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<v Speaker 2>comes to diagnosing autism.

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<v Speaker 4>We know from the literature that autistic girls and women,

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<v Speaker 4>as well as autistic people from culturally and linguistically diverse backgrounds,

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<v Speaker 4>especially those from immigrant and refugee backgrounds, as well as

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<v Speaker 4>people from the LGBTQA plus community or people from those

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<v Speaker 4>communities are experiencing greater rates of US structural barriers that

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<v Speaker 4>are precluding them from accessing our timely diagnoses. For example,

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<v Speaker 4>the average age that a autistic girl may get diagnosed,

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<v Speaker 4>some studies have noted maybe up to five to ten

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<v Speaker 4>years later than that of a cist gender man. You know,

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<v Speaker 4>as much as people may love say something like the

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<v Speaker 4>Big Bang theory or rain Man or what's eating Gilbert grapes,

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<v Speaker 4>you know, not all autistic people are a one size

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<v Speaker 4>fits all approach. Who fits that you know media stereotype

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<v Speaker 4>of a you know, good doctor s you know, white

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<v Speaker 4>cich gender man who you know may like puzzles. I

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<v Speaker 4>myself mentioned that I like as staterooms and puzzles, But

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<v Speaker 4>there are so much more to me than just that

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<v Speaker 4>one domain. And I think with diagnoses and support services,

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<v Speaker 4>we really are key to hear from autistic people from

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<v Speaker 4>First Nations, the First Nations communities, as well as from

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<v Speaker 4>autistic girls and women and other other focused focus groups

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<v Speaker 4>and demographics who have been are disproportionately impacted by those

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<v Speaker 4>barriers to accessing diagnoses. Because diagnosticians are ultimately people, that

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<v Speaker 4>means that as people and as humans, they are you know,

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<v Speaker 4>not invulnerable to human bias and to implicit biases.

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<v Speaker 2>And Andy you've already eluded a couple of times to

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<v Speaker 2>the mental health element of all of this. But I mean,

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<v Speaker 2>what can be done in this space.

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<v Speaker 4>I think we have to address the elephant in the room.

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<v Speaker 4>We know from the Senate Select Medium, Autism and the

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<v Speaker 4>Disability or Commission that suicide is something that is affecting

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<v Speaker 4>autistic Australians. The bipartisan report from the Senate Select Comedian

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<v Speaker 4>and Autism reported that autistic Australians have a life expectancy

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<v Speaker 4>twenty to thirty six years shorter than that of the

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<v Speaker 4>general population, with two times the mortality rate, with suicide

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<v Speaker 4>being the number one cause of death. Another study reported

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<v Speaker 4>that nine out of ten autistic women have experienced sexual violence.

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<v Speaker 4>These are rates which I think really demonstrate that we

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<v Speaker 4>need urgent action and we need it now. The reason

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<v Speaker 4>why we have a working group on Mental health and

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<v Speaker 4>we are trying to build a roadmap to improving mental

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<v Speaker 4>health and health outcomes in general for utific people is

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<v Speaker 4>because that impact of discrimination, as well as the reports

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<v Speaker 4>we're hearing of health services, mental health services refusing services

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<v Speaker 4>for autistic people by putting them in the quote unquote

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<v Speaker 4>too hard, too complex basket. These are what are I

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<v Speaker 4>think essentially contributing to so many people in our community

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<v Speaker 4>not being able to live the life to the quality

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<v Speaker 4>that they deserve and to the lifespan that they are entitled.

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<v Speaker 4>I feel incredibly hopeful and incredibly honored to be a

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<v Speaker 4>part of this national Autism strategy because I know that

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<v Speaker 4>if the community engages with this strategy and they're willing

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<v Speaker 4>to continue sharing their stories as they already have and

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<v Speaker 4>offering solution for what they would like to see, we

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<v Speaker 4>can actually start implementing practical and accountable strategies and policies

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<v Speaker 4>that will really enact better outcomes for all of us.

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<v Speaker 4>We want outcomes ultimately, not merely opportunities. And in the

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<v Speaker 4>UK they have a national Autism strategy, and you know,

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<v Speaker 4>we can't let the Brits beat us. We've got to

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<v Speaker 4>catch up with them. You know, if we have definitely

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<v Speaker 4>exactly if we have that competitiveness when it comes to say,

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<v Speaker 4>you know, soccer and football, you know, let's you know,

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<v Speaker 4>put that same energy we put towards the Matilda's winning,

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<v Speaker 4>towards getting our national autism strategy on par with the British.

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<v Speaker 2>One, love it and so Andy. As a final note,

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<v Speaker 2>if we have listeners who are autistic and wanting to

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<v Speaker 2>share their lived experience, can you just tell our listeners

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<v Speaker 2>how they can do that please?

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<v Speaker 4>Absolutely so. There are many ways that the community as

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<v Speaker 4>well as allies can share their thoughts, share their stories.

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<v Speaker 4>We are really keen, as you know, the team behind

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<v Speaker 4>overseeing the development of the National Autism Strategy, to capture

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<v Speaker 4>as many diverse voices as possible. So we have community

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<v Speaker 4>events and you know, I'm happy for the link to

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<v Speaker 4>those community events if you included in the show notes,

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<v Speaker 4>but we have.

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<v Speaker 2>We will absolutely do that.

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<v Speaker 4>We have forums for the community at large as which

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<v Speaker 4>is for allies as well as autistic people, as well

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<v Speaker 4>as forums adjust for autistic people but for those who

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<v Speaker 4>you know may not feel as comfortable to you know,

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<v Speaker 4>be in a workshop or a forum. We also are

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<v Speaker 4>very happy to receive information through ridden feedback. So there

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<v Speaker 4>is a discussion paper that summarizes what we're trying to

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<v Speaker 4>capture information about, and they'll be ways to essentially provide

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<v Speaker 4>your ridden thoughts in response to that discussion paper.

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<v Speaker 2>Brilliant Andy, thank you so much for your time today.

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<v Speaker 2>Really really appreciate it.

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<v Speaker 4>Likewise, thank you so much for inviting me. You know

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<v Speaker 4>nothing about us without us.

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<v Speaker 2>I'm sure everyone will love having heard from you.

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<v Speaker 4>Thank you so much, Thank you, buy Zarah.

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<v Speaker 2>Thanks for joining us today on the Daily OZ. If

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<v Speaker 2>you want more information about how to make a submission

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<v Speaker 2>to help shape the nation's autism strategy, or where you

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<v Speaker 2>can join a community forum, those links are in the

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<v Speaker 2>show notes. We'll be back again tomorrow, but until then,

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<v Speaker 2>have a great day.