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RUBY:

From Schwartz Media, I’m Ruby Jones, this is 7am.

As a young child, Grace Tame often felt misunderstood. When, later on, she received an autism diagnosis, it helped explain that feeling.

It’s a common experience for autistic people, who have long been misrepresented, misdiagnosed and mistreated.

The government now hopes to fix that, unveiling Australia’s first ever National Autism Strategy which it says will put the voices and experiences of autistic people front and centre.

There’s plenty of hope and optimism but, with the plan stretching over six years, there are still questions as to whether it will bring about genuine change.

Today, former Australian of the Year Grace Tame, on what the success of the National Autism strategy hinges on and what she’d like to see as an Autistic person living in a neurotypical world.

It’s Wednesday, January 29.

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RUBY:

Grace, first of all, welcome to 7am. Thanks for coming on the show.

GRACE:

Thanks for having me on.

RUBY:

So, Grace, the National Autism Strategy has just been released, and this is the first time that we've ever had something like this in Australia. So, to begin with, how significant is the moment of its release?

GRACE:

That there's a strategy is a huge thing to celebrate. It's a starting point and we haven't had that before as you just said.

Audio Excerpt - ABC News Reporter:

“The federal government has unveiled its seven year plan to improve the lives of Australians living with Autism.”

GRACE:

And these sorts of government initiatives in their infancy are always a little messy, a little clunky, but they can be workshopped.

Audio Excerpt - ABC News Reporter:

“The $42.3 million dollar national strategy aims to create a safe and inclusive society where all Autistic people are supported and empowered to thrive…”

GRACE:

And I remain hopeful that it'll be the point of leverage for a lot of advocates and people in the autism community and their families.

RUBY:

And when you talk about the autism community and their families, what was your experience growing up and what assumptions did you come up against, from other people, about what they thought it meant to be autistic?

GRACE:

What strikes me as interesting is that my mother, who's always been a huge advocate for me in many areas, was taking me to health professionals from a very early age because I was exhibiting signs of autism. I think I was about three years old when she took me to get my hearing tested because she thought I was deaf. But it's not that I'm deaf, it's that I can't filter out background noise which a lot of autistic people also experience.

And then when I was in my early teens as a means of asserting my own agency, I suppose, or control and a sense of routine where I didn't have a lot of routine in my life because my parents separated when I was two and I lived between two houses so, you know, to, to establish some agency for myself, I would eat safe foods, foods that made me feel comfortable, you know, and I still do that very much so. I eat at the same times and I eat the same foods every day, pretty much. And I developed an eating disorder. I became severely anorexic to the point of involuntary hospitalisation. And when I was actually in treatment my mother flagged, or she attempted to flag, with the professional team that I might be autistic and she was actually dismissed and spoken to in a kind of condescending way.

But as in recent years, probably over the last decade especially, more resources that have previously been in the silo of academia and understood by mental health professionals, as those resources have become more publicly available and more accessible and more broadly representative, not just of a narrow representation of, of autism, it's become easier, I think. While there's still obviously a lot of work that needs to be done, it's become easier to be recognised, to be identifiable as an autistic person.

RUBY:

Yeah. I would like to talk a little bit more about the importance of diagnosis, because that is one thing that the strategy is designed to do, to fund research into the true prevalence of autism. It's likely that there's a lot of people who are undiagnosed. So how important was it for you to get a diagnosis and how did that change your experience?

GRACE:

It changed it in some ways. In other ways, it's made it harder. You know, as a public figure who didn't choose the public life I've received, you know, all sorts of negative comments about autism being a conspiracy; autism being, you know, retardation, which is obviously a horrific thing to to suggest.

But it has helped me personally to, in hindsight, understand a lot of my childhood where I was sort of feeling quite isolated and misunderstood because it is so difficult to live as an autistic person in a neurotypical world. In other ways, I mean, I'm incredibly lucky. My best friend Dominique, who I've been friends with since we were both 7 years old, 23 years of friendship under our belt, he's also autistic. And, you know, 32% of the autistic population don't actually make friends outside of their family. But I had this sort of social relief from Dom, you know, where we could be unmasked and free to be ourselves and reassure each other and be completely, yeah, at ease.

RUBY:

One of the things that's in this plan is the need for sensory friendly spaces. So I wonder if you could talk to all more about what it's like to be in a world that is not set up with you in mind, and then for that to be changed. Because I imagine that must come with a sense of relief to find yourself in a space that is designed for you.

GRACE:

Yeah, look I think, like if I go now to events that know that I'm autistic or they're held by an autistic advocacy body, they will have a sensory room and you'll find me in there. I personally don't have a lack of energy, and I think that a lot of autistic people that I know experience this as well. It's not that we have a lack of energy or a lack of attention or a lack of an ability to participate in anything. It's that we've got so much of it, but it's really hard to organise when we're competing with this cacophony of sound and light and all of these other different sensory inputs that are just happening too rapidly for the autistic profile.

RUBY:

And the plan that’s just been released, there was one other area I wanted to kind of talk a bit more about, unemployment. So autistic people are six times more likely to be unemployed. What kind of, I guess, practical measures would help?

GRACE:

Oh that's a very big question because it entirely depends on the, you know, the sector of the industry and, you know, the specific workplace environment as well, and the understanding from colleagues of what a particular individual's experience of autism is. And I think a conversation needs to start there because the neurotypical population, I think, could learn a lot from autistic people if they were given the understanding and that comfortability to actually express themselves and demonstrate their skills in their unique way.

I think at that first point of contact, if someone says that they're autistic, they're going to often contend with stereotypes. We’ve received information that a particular person has about what autism means, and autism means something, I think, entirely different to the mainstream stereotype of autism.

For example my father was a public high school teacher for over 30 years. He worked in the Tasmanian Education Department and in his, the later part of his career, he was working exclusively with children who had higher needs, many of whom were autistic. When I was diagnosed as autistic, he was surprised. And, you know, it was like, “Oh but she's not autistic. I teach autistic children every day and she's nothing like those autistic children”.

And so I think, you know, as with any particular subject matter, we have a tendency as human beings to be very, you know, sort of insular and focused on a particular thing. And we don't pay attention to other content until it is in its most desperate or extreme state. And then that's what we think of that thing as. And we don't see a whole backstory or a whole spectrum that actually encompasses it. If people understood that fundamentally, I think that would be a great starting point for change.

And if there's anything else that needs to be mentioned, it's that there are really great service providers out there who have that specialist knowledge of what it's like to be autistic, of autism itself and all its different nuances that need to be funded properly.

RUBY:

So is the funding for the National Autism Strategy enough? That’s coming up after the break.

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RUBY:

Grace, let’s talk about the funding for the National Autism Strategy, because there are these 22 commitments in the strategy and there’s $42.3 million, at least initially, set aside to fulfil those commitments.

GRACE:

Over a seven year period. Yeah, which breaks down to about six million per year.

RUBY:

Is that enough?

GRACE:

It's funny because, you know, for the average Joe Public, it's, it sounds like a lot of money. You know, and in a way it is but it has to go not just a long way, but to a lot of different places. And where there's a possibility to directly inject funds into frontline services that are equipped and then knowledgeable, they're ready otherwise. They're just waiting on money to get resources to be able to lift themselves beyond crisis point and help more people. That's a great immediate action I think that can be taken.

RUBY:

And Grace, this plan comes at a time where many people with autism are struggling to get the support they need from the NDIS. So how should we be thinking about that?

GRACE:

So, as we speak, there are autistic children and autistic adults who are being booted off the NDIS, and the NDIS is facing cutbacks in funding and that's an existing support mechanism nationwide. So I think that needs to be looked at because there are many autistic people who need that support to contend with the world as it is. Then there's also the road map, you know, and this is more than anything, even though it's the Department of Social Services that are governing this particular initiative, really it is an issue of public health.

You know, part of why the situation is so dire for the autistic community is that we have been living so long in a neuro typical world and not being accommodated and so our unmet needs are manifesting as a raft of different health issues. You know, mental and physical health are not separate. It's a whole body holistic approach that needs to be taken.

RUBY:

Yeah, and you kind of touched on this, but do you think that there is this risk here that a strategy like this becomes too bureaucratic and isn't really focused enough on the practical?

GRACE:

Well, as an anarchist who is wearing a t-shirt that literally tells you I'm an anarchist, I'm always going to tell you a bureaucratic document is too bureaucratic. There's lots of jargon that you've got to cut through to actually find the very direct actions and that ones that aren't just sort of, you know, differently worded versions of the previous one. Sort of wading through information that's interspersed with actions you go like all the actions here, the information about autism is here instead of it sort of like, you know, every point being given far too much context that's actually repetition of context as provided earlier in the document.

I can't speak for the entire autistic community, but as a person who is autistic, I know that not just myself but many close friends of mine who are also neurodivergent, we really appreciate that direct communication where there's no ambiguity because there's a tendency, at least in my experience certainly and I know that other friends of mine who like this as well, is that we all take things literally. We take things at face value and we're not good at particularly reading subtext.

RUBY:

Yeah, I mean, I think we could all be more direct. I often think that it's easy to hide in ambiguity for people, but also for governments and sometimes complexity is used as a way to kind of provide cover for inaction. So I hope that the National Autism Strategy really means that there will be real change.

GRACE:

I hope so as well. And again, even as an anarchist, I am very hopeful that this is, this is at least a platform for change and for more specificity to be called for from the autistic community who really need to be leaders in this. And I think it also needs to be acknowledged that a lot of contributions have come from various autistic bodies and various autistic individuals and that needs to be lauded. And that we need to make sure that the entirety of, of the spectrum as best it can be, is represented and that includes autistic people who are minimally speaking or in fact non-speaking. You know, because there's a tendency to to speak for them instead of speak to them and, and allow them to communicate in ways that are actually effective for them and accessible to them.

RUBY:

Well, Grace, thank you so much for your time today.

GRACE:

Yeah, thanks for having me.

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RUBY:

Also in the news today,

The US markets are still recovering from a major crash in the tech sector, sparked by growing concerns among investors about the future of AI technology.

US Tech company Nvidia, known for producing the chips used in data centres, had almost 1 trillion dollars wiped off its value on Monday, the biggest one-day loss in U.S. history.

The downturn was triggered by the launch of DeepSeek, a Chinese startup's new AI model, which reportedly outperforms some of the US’s leading models at a fraction of the cost.

This development raised concerns about the potential impact on demand for NVIDIA's advanced chips.

And, Oceanographer and entrepreneur Tony Haymet has been appointed as Australia’s new Chief Scientist.

Professor Haymet will serve a three-year term, providing independent scientific advice to the government.

When asked about the Coalition’s plans to pursue nuclear power, Professor Haymet said he thinks Australia “should be open to any form of energy”.

I'm Ruby Jones, this is 7am, see you tomorrow.

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