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ASHLYNNE:

From Schwartz Media, I’m Ashlynne McGhee. This is 7am.

Grace Tame knows how to advocate. Her campaigning for survivors of sexual assault and abuse helped to create real change, and pushed powerful institutions to be better.

Now, she is turning that lens to something she has lived with her whole life and which is now on the agenda in Canberra. Autism and neurodivergence.

Today, former Australian of the year and contributor to The Saturday Paper Grace Tame, on Australia’s first attempt at a national autism strategy and why we have to get it right.

It’s Tuesday April 23.

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ASHLYNNE:

Grace, just to begin with I wanted to ask about what it's actually like to get an autism diagnosis?

GRACE:

Well, I can only speak to my own experience of diagnosis, which was a decade ago now. I was seeing a psychologist and I believe she had an inkling. She tested the waters by handing me a picture book called All Cats Have Aspergers. I started reading it and on each page is a picture of a cat doing something and then on the corresponding page is a piece of text describing an autistic trait that matches a feline trait. And by the end of it, I was in tears because I realised that I was either autistic or I was a cat. And I'm not a cat.

I do miaow and one of my best friends, in fact he is my best friend, we’re both autistic. We didn't know it when we first met each other at age seven, but we're both autistic, and looking back on the childhood that we shared because we spent so much time together there were lots of involuntary noises made and they were very cat-like. Our brains, being that different neuro type, just understood each other and there was no need for any kind of forced interaction. It was just very organic.

When I received the diagnosis I was 19, I was living overseas, I had moved to the United States at age 18, really to escape the insular, small town environment where the rumour mill had been running after what happened at my high school. And I was still unpacking a lot of that trauma, it was still very present, I was still very young and I don't think I was quite ready to absorb the diagnosis when it came. It just seemed like another one of those elements by which I would face more stigma, because at that time, you know, there were more conversations about autism and the nuances of autism and how it can look beyond the stereotypes that we're fed in the mainstream. However, there was still a lot of stigma, it was just tough. I probably should just point out at this point in the podcast, because I've used the term Asperger's a couple of times, Asperger's is no longer used. It's been absorbed into autism spectrum disorder. Again, I have a problem with the term disorder as well, but it's that autism banner, but it can feel at once like a relief but also well, it’s a bit late now

ASHLYNNE:

In terms of how I just want to talk to you a little bit about that gap between what actually having autism is like and how people see autism.

GRACE:

Yeah, well it seems to be this sort of pervasive misunderstanding of what autism actually is. It's not a condition, it's not a mental illness or an affliction. It's just a different neuro type, it’s just a different brain.

Audio Excerpt - Senate Select Committee:

“I declare open this hearing of the Senate Select Committee on Autism. This is a public hearing and a Hansard transcript of the proceedings is being made.”

GRACE:

The conditions of so many areas of life, whether it's employment, education, health care, housing, you name it, have been for so long set up primarily for neurotypical people. And it has thus meant that how neurodivergent, and in particular autistic people, navigate them... we've essentially just been met with little to no support.

Audio Excerpt - Senate Select Committee:

“So the attitudes to, and outcomes for, autistic Australians are substantially worse than for most other major disability types. Autism is distinct and has a whole bunch of distinct issues.”

GRACE:

For so long they have been inadequate because they haven't been designed with autistic people in mind. And that has led to, you know, extreme measurable negative outcomes like higher rates of suicide, a life expectancy that is 20 years less than the average Australian, higher rates of child sexual abuse and other forms of sexual violence, higher rates of homelessness, and you name it.

Audio Excerpt - Senate Select Committee:

“We find that authorities have a sort of common belief that ASD is not a real disability and that most of them have milder cases. So the data says that that's not true.”

GRACE:

And the intensity of traits really depends on the external environment. So in some cases, the level of intensity of autistic traits are disabling in of themselves, and then in other cases it becomes a disability because of the difficulty of navigating an environment or a world that doesn't really cater to autistic needs. And so it becomes debilitating having to overreach, having to suppress needs. But disability certainly doesn't mean inability. I think that's where some people misunderstand that term disability. That it's synonymous with incompetence and that's just not the case. That's why we need a strategy. Not because we need to fix autism or autistic people, but because we need to fix the current system.

Audio Excerpt - News Reporter 1:

“On world autism awareness day, a first of its kind, National Autism Strategy has been released which aims to enhance the lives of people with autism.”

ASHLYNNE:

This is the first ever National Autism Strategy, what did you think when you first got your hands on it?

GRACE:

Yeah, I think I, like probably many autistic people who read this strategy and maybe even participated in the strategy, there was sort of a feeling of cautious hope.

Audio Excerpt - News Reporter 2:

“Disability advocates have cautiously welcomed a draft for the National Autism Strategy, saying it is a good first step, but there is room for improvement.”

GRACE:

You know, on the one hand it's really fantastic that this is happening, this whole initiative. You know, it's great, it's great that there's this spotlight on it because there certainly needs to be a spotlight on it.

Audio Excerpt - News Reporter 3:

“Economic inclusion is one of four key areas identified in the draft National Autism Strategy, along with social inclusion, diagnosis, services and support, and physical and mental health.”

GRACE:

But certainly, and I understand it to be the general consensus as well from the autistic community and our supporters, that it has sort of left a lot to be desired. And we're worried about if anything concrete will come out of it.

ASHLYNNE:

And what first struck you about it?

GRACE:

What first struck me about it, I'll be really honest, had a bit of a minor internal autistic meltdown over the formatting, which was so bad. It was all out of alignment, the columns were wonky and the rows were not evenly spaced. They had these little segments, and one of the segments had a different colour border to the rest of the segments and the text was all pixelated.

The experience for an autistic person is not just like, oh yeah, it's a little bit wonky, I'll just let that slide. It's almost painful. It's so jarring. It prevents me from being able to absorb that content. It's the sensation akin to magnetic repulsion. So if you've ever had a magnetic train set and you're trying to put two trains together and they just don't go together, that's... that's what it is.

ASHLYNNE:

After the break what, beyond the formatting, we can do to make a real difference for people with autism.

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ASHLYNNE:

So Grace, the government’s released this new national autism strategy, talk to me about the rest of it. What’s good? What’s bad? How’s it landed?

GRACE:

It's really difficult to do these sorts of things and to do them well and it is just a draft. There is huge potential for it. And the fact that autistic people, their carers and families, and the autistic community more broadly was included in the strategy formation via consultation and co-design processes, should be celebrated, I'm certainly celebrating that. But when it sort of got to the about autism section, I found that to be pretty deficit focussed. There are sort of questions that I had as to whether the strategy had a clear understanding of what autism is, with respect to the fact that autism can be defined differently, depending on the individual or the organisation, but there are certainly things that I would say autism is not, and it was referred to as a lifelong condition which makes it sound like... while yes, it is from birth to death because it is a neuro type, it's how your brain is wired, it's not a condition. There are many amazing things about autism that could have been included to offset that and show the potential and the hope. You know, in each of the areas that they focussed on to explain the background of autism, one of them was education, another one was employment, and then there was health care as well, I think that as an autistic person there was a lot in there that we already knew and that people in the field would probably be like, well, yeah, okay well, we know that, but where to from here?

ASHLYNNE:

What kind of practical, I guess, actions could be in this strategy? Give me some examples.

GRACE:

Well, I think following the lead of the recommendations handed down by the recent royal commission into, you know, abuse and neglect of people with disability, that would be a great starting point. For example, a necessary reform to the Disability Discrimination Act is shifting the onus of responsibility from autistic employees to employers so that they have to prove in cases of a claim of discrimination that they didn't discriminate against the autistic employee. The onus of responsibility is currently on the autistic employee. And then the Australian Disability Enterprises needs to be shut down because autistic people are employed there, in some cases, for less than $3 an hour. Obviously, they need to have jobs but that's just abysmal. Opening up all schools to all people, you know, as soon as is feasible. You know, I think it's important that autistic people and other people with higher needs are able to integrate into the community as early as possible. And that would go hand in hand with, you know, education of teachers and other staff and, of course, students about what autism is. I know that there were mentions in the strategy of awareness raising campaigns targeted to, you know, helping people understand what autism is.

ASHLYNNE:

I guess you've been an observer. You've had this, like, front row seats to what it takes to sort of get some actual change happening in Canberra. Like what it takes to get people to care, to get people to take notice instead of just getting, like, talked about and thrashed around for years as an issue. With autism, what do you think it will take for people to really go, whoop, we need to do something right now.

GRACE:

That’s a really good question. I think that as a starting point there needs to be an opening up of the dialogue. You know, much like for many years child sexual abuse was not really spoken about, you know, around the time of the Royal Commission, so you're talking about 2012 or 2013. But once that really was opened up to everybody and people started to see the breadth of it and the reality of it, and once we started to understand that, and more and more individuals were able to share their, you know, unique experience, that's where people started to understand the gravity of the problem, not saying that autism or autistic people are a problem, but they started to understand what the landscape actually looked like and that is what informed the necessary nuanced changes to society at large, but to legislation and to policy.

So I think that's what really needs to happen, because from where I'm sitting, autism is still projected in the mainstream as being a deficit or a disorder. It's very stereotyped. So often if you’re seeing someone and you’re thinking that person’s dysfunctional who is autistic. It’s not because they are dysfunctional inherently, but put them in the right environment and they would function just right.

ASHLYNNE:

It's been really great to chat with you. Thank you for your time.

GRACE:

Thanks for having me on.

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ASHLYNNE:

Also in the news...

Erin Patterson, the woman alleged to have poisoned three of her relatives with mushrooms, has been back in court for the first time this year.

Patterson could remain in custody for at least 14 to 15 months, if her wish for the case to be tried in her local community is granted.

And,

Greens Senator Sarah Hanson Young has called billionaire Elon Musk a quote “tech thug” who “doesn’t have the guts” to front up to the Australian people, following his failure to moderate videos of the Wakeley church stabbing on his social platform X.

Australia’s ESafety Commissioner has issued a takedown order of the videos, prompting Musk to compare the commissioner Julie Inman Grant to a communist regime censor.

Thanks for listening, see you again tomorrow.

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