WEBVTT - Grace Tame on improving the lives of autistic Australians 0:00:01.320 --> 0:00:03.680 From Schwartz Media. I'm Ruby Jones. 0:00:04.280 --> 0:00:12.440 This is seven AM. As a young child, Grace Tame 0:00:12.600 --> 0:00:17.840 often felt misunderstood. When later on she received an autism diagnosis, 0:00:18.360 --> 0:00:21.959 it helped explain that feeling. It's a common experience for 0:00:22.000 --> 0:00:27.600 autistic people who've long been misrepresented, misdiagnosed and mistreated. The 0:00:27.680 --> 0:00:32.360 government now hopes to fix that, unveiling Australia's first ever. 0:00:32.320 --> 0:00:34.959 National Autism Strategy, which it says. 0:00:34.760 --> 0:00:38.280 We'll put the voices and experiences of autistic people front 0:00:38.360 --> 0:00:42.440 and center. There's plenty of hope and optimism, but with 0:00:42.479 --> 0:00:45.800 the plan stretching over six years, there are still questions 0:00:45.840 --> 0:00:46.479 as to whether it. 0:00:46.479 --> 0:00:48.159 Will bring about genuine change. 0:00:48.880 --> 0:00:52.640 Today, former Australian of the Year Grace Tame on what 0:00:52.720 --> 0:00:56.280 the success of the National Autism Strategy hinges on and 0:00:56.320 --> 0:00:58.960 what you'd like to see as an autistic person living 0:00:59.040 --> 0:01:13.320 in a neurotypical way world. It's Wednesday, January twenty nine. Grace, 0:01:13.360 --> 0:01:15.600 First of all, welcome to seven AM, Thanks for coming. 0:01:15.440 --> 0:01:18.160 On the show. Thanks for having me on so Grace. 0:01:18.200 --> 0:01:21.520 The National Autism Strategy has just been released and this 0:01:21.600 --> 0:01:24.280 is the first time that we've ever had something like 0:01:24.360 --> 0:01:28.320 this in Australia. So to begin with, how significant is 0:01:28.440 --> 0:01:29.559 the moment of its release? 0:01:29.920 --> 0:01:33.200 That there's a strategy is a huge thing to celebrate. 0:01:33.600 --> 0:01:36.240 It's a starting point and we haven't had that before. 0:01:36.280 --> 0:01:37.160 As you just said, the. 0:01:37.120 --> 0:01:40.640 Federal government has unveiled its seven year plan to improve 0:01:40.760 --> 0:01:43.360 the lives of Australians living with autism. 0:01:43.640 --> 0:01:48.160 And these sorts of government initiatives in their infancy are 0:01:48.240 --> 0:01:52.920 always a little messy, a little clunky, but they can 0:01:52.960 --> 0:01:53.720 be workshopped. 0:01:54.040 --> 0:01:57.880 The forty two point three million dollar National Strategy aims 0:01:57.920 --> 0:02:01.840 to create a safe and in inclusive society where all 0:02:02.000 --> 0:02:05.560 autistic people are supported and empowered to thrive. 0:02:05.880 --> 0:02:08.480 And I remain hopeful that it'll be the point of 0:02:08.560 --> 0:02:11.680 leverage for a lot of advocates and people in the 0:02:11.680 --> 0:02:13.760 autism community and their families. 0:02:14.200 --> 0:02:17.320 And when you talk about the autism community and their families, 0:02:18.080 --> 0:02:21.440 what was your experience growing up and what assumptions did 0:02:21.480 --> 0:02:24.079 you come up against from other people about what they 0:02:24.520 --> 0:02:26.360 thought that it meant to be autistic. 0:02:26.880 --> 0:02:30.400 What strikes me is interesting is that my mother, who's 0:02:30.400 --> 0:02:33.040 always been a huge advocate for me in many areas, 0:02:33.840 --> 0:02:36.680 was taking me to health professionals from a very early 0:02:36.760 --> 0:02:42.119 age because I was exhibiting signs of autism. I think 0:02:42.120 --> 0:02:43.760 I was about three years old when she took me 0:02:43.800 --> 0:02:46.120 to get my hearing tested because she thought I was deaf. 0:02:46.200 --> 0:02:48.120 But it's not that I'm deaf, it's that I can't 0:02:48.320 --> 0:02:51.680 filter out background noise, which a lot of autistic people 0:02:51.919 --> 0:02:57.320 also experience. And then when I was in my early teens, 0:02:58.360 --> 0:03:03.600 as a mean of asserting my own agency, I suppose 0:03:03.800 --> 0:03:07.560 or control and a sense of routine where I didn't 0:03:07.560 --> 0:03:09.760 have a lot of routine in my life because my 0:03:09.840 --> 0:03:12.600 parents separated when I was two and I lived between 0:03:12.639 --> 0:03:17.480 two houses, so, you know, to establish some agency for myself, 0:03:17.560 --> 0:03:22.120 I would eat safe foods, foods that made me feel comfortable, 0:03:22.120 --> 0:03:24.240 you know, And I still do that very much. So 0:03:24.400 --> 0:03:28.160 I eat at the same times, and I eat the 0:03:28.240 --> 0:03:33.200 same foods every day pretty much. And I developed an 0:03:33.240 --> 0:03:36.800 eating disorder. I became severely and arecxic to the point 0:03:36.840 --> 0:03:40.280 of involuntary hospitalization. And when I was actually in treatment, 0:03:40.760 --> 0:03:44.520 my mother flagged, or she attempted to flag with the 0:03:44.800 --> 0:03:48.800 professional team that I might be autistic, and she was 0:03:48.840 --> 0:03:54.320 actually dismissed and spoken to in a kind of condescending way. 0:03:55.040 --> 0:03:58.480 But as in recent years, probably over the last decade, 0:03:58.560 --> 0:04:02.840 especially more resources that have previously been in the silo 0:04:02.880 --> 0:04:06.560 of academia and understood by mental health professionals. As those 0:04:07.440 --> 0:04:11.080 resources have become more publicly available and more accessible and 0:04:11.200 --> 0:04:16.320 more broadly representative, not just of a narrow representation of autism, 0:04:16.839 --> 0:04:21.160 it's become easier, I think, while there's still obviously a 0:04:21.200 --> 0:04:22.880 lot of work that needs to be done, it's become 0:04:23.080 --> 0:04:27.640 easier to be recognized, to be identifiable as an autistic person. 0:04:28.800 --> 0:04:30.760 Yeah, I'd like to talk a little bit more about 0:04:30.800 --> 0:04:33.720 the importance of diagnosis, because that is one thing that 0:04:33.720 --> 0:04:37.680 the strategy is designed to do to fund research into 0:04:37.360 --> 0:04:40.520 the true prevalence of autism. It's likely that there is 0:04:40.520 --> 0:04:43.760 a lot of people who are undiagnosed. So how important 0:04:43.800 --> 0:04:46.240 was it for you to get a diagnosis and how 0:04:46.279 --> 0:04:48.039 did that change your experience? 0:04:48.440 --> 0:04:50.560 It changed it in some ways. In other ways it's 0:04:50.600 --> 0:04:54.080 made it harder, you know, as a public figure who 0:04:54.160 --> 0:04:58.000 didn't choose the public life, I've received, you know, all 0:04:58.040 --> 0:05:02.880 sorts of negative comments about autism being a conspiracy, autism 0:05:02.960 --> 0:05:07.360 being you know, retardation, which is obviously a horrific thing 0:05:07.720 --> 0:05:13.240 to suggest, but it has helped me personally to in 0:05:13.360 --> 0:05:16.719 hindsight understand a lot of my childhood where I was 0:05:16.720 --> 0:05:20.000 sort of feeling quite osolated and misunderstood because it is 0:05:20.040 --> 0:05:23.200 so difficult to live as an autistic person in a 0:05:23.240 --> 0:05:27.880 neurotypical world. In other ways, I mean, I'm incredibly lucky 0:05:27.880 --> 0:05:31.880 my best friend Dominic, who I've been friends with since 0:05:31.920 --> 0:05:34.039 we were both seven years old, twenty three years of 0:05:34.040 --> 0:05:39.200 friendship under our belt. He's also autistic, and you know, 0:05:39.360 --> 0:05:42.880 thirty two percent of the autistic population don't actually make 0:05:42.920 --> 0:05:46.120 friends outside of their family. But I had this sort 0:05:46.120 --> 0:05:49.640 of social relief from dom you know, where we could 0:05:50.120 --> 0:05:56.240 be unmasked and free to be ourselves and reassure each 0:05:56.279 --> 0:06:01.000 other and be completely yeah, at ease. 0:06:02.240 --> 0:06:04.200 One of the things that's in this plan is the 0:06:04.240 --> 0:06:07.360 need for sensory friendly spaces. So I wonder if you 0:06:07.400 --> 0:06:11.080 could talk to all more about what it's like to 0:06:11.120 --> 0:06:13.000 be in a world that is not set up with 0:06:13.040 --> 0:06:15.920 you in mind, and then for that to be changed, 0:06:16.000 --> 0:06:18.200 because I imagine that must come with a sense of 0:06:18.400 --> 0:06:19.279 relief to find. 0:06:19.120 --> 0:06:21.559 Yourself in a space that is designed for you. Yeah. 0:06:21.600 --> 0:06:24.560 Look, I think like if I go now to events 0:06:24.600 --> 0:06:27.560 that know that I'm autistic, or they're held by an 0:06:27.600 --> 0:06:31.599 autistic advocacy body. They will have a sensory room and 0:06:31.640 --> 0:06:34.720 you'll find me in there. I personally don't have a 0:06:34.760 --> 0:06:36.320 lack of energy, and I think that a lot of 0:06:36.360 --> 0:06:38.680 autistic people that I know experiences as well. It's not 0:06:38.680 --> 0:06:40.160 that we have a lack of energy or a lack 0:06:40.200 --> 0:06:43.440 of attention or a lack of it ability to participate 0:06:43.440 --> 0:06:46.960 in anything. It's that we've got so much of it. 0:06:47.320 --> 0:06:50.400 But it's really hard to organize when we're competing with 0:06:50.760 --> 0:06:56.039 this cacophony of sound and light and all of these 0:06:56.080 --> 0:07:00.000 other different sensory inputs that are just happening too rapidly 0:07:00.600 --> 0:07:03.080 for the autistic profile and. 0:07:03.400 --> 0:07:04.800 The planets has been released. 0:07:05.000 --> 0:07:06.680 There was one other area I wanted to kind of 0:07:06.720 --> 0:07:10.160 talk a bit more about unemployment. So autistic people are 0:07:10.160 --> 0:07:13.360 six times more likely to be unemployed. What kind of 0:07:13.560 --> 0:07:15.960 I guess practical measures would help. 0:07:16.720 --> 0:07:19.840 Oh, that's a very big question because it entirely depends 0:07:19.880 --> 0:07:23.080 on the you know, the sector of the industry, and 0:07:23.680 --> 0:07:30.480 you know, the specific workplace environment as well, and the 0:07:30.600 --> 0:07:35.360 understanding from colleagues of what a particular individual's experience of 0:07:35.400 --> 0:07:38.480 autism is. And I think the conversation needs to start 0:07:38.520 --> 0:07:42.600 there because the neurotypical population I think could learn a 0:07:42.600 --> 0:07:46.560 lot from autistic people if they were given the understanding 0:07:46.640 --> 0:07:50.920 and that comfortability to actually express themselves and demonstrate their 0:07:50.920 --> 0:07:53.680 skills in their unique way. I think at that first 0:07:53.720 --> 0:07:56.680 point of contact, if someone says that they're autistic, they're 0:07:56.680 --> 0:08:02.840 going to often contend with stereotype of with received information 0:08:02.920 --> 0:08:06.440 that a particular person has about what autism means, and 0:08:06.600 --> 0:08:10.360 autism means something I think entirely different to the mainstream 0:08:10.440 --> 0:08:14.480 stereotype of autism. For example, my father was a public 0:08:14.560 --> 0:08:16.480 high school teacher for over thirty years. He worked in 0:08:16.600 --> 0:08:19.840 a Tasmanian education department, and in his the later part 0:08:19.840 --> 0:08:23.880 of his career, he was working exclusively with children who 0:08:23.920 --> 0:08:27.480 have higher needs, many of whom were autistic. When I 0:08:27.800 --> 0:08:33.600 was diagnosed as autistic, he was surprised, and you know, 0:08:33.679 --> 0:08:36.080 he was like, oh, but she's not autistic. I teach 0:08:36.120 --> 0:08:39.240 aut children every day, and she's nothing like those autistic children. 0:08:39.760 --> 0:08:42.079 And so I think, you know, as with any particular 0:08:42.120 --> 0:08:45.000 subject matter, we have a tendency as human beings to 0:08:45.040 --> 0:08:48.440 be very you know, sort of insular and focused on 0:08:48.440 --> 0:08:51.520 a particular thing, and we don't pay attention to other 0:08:52.040 --> 0:08:57.200 content until it is in its most desperate or extreme state, 0:08:57.800 --> 0:09:00.079 and then that's what we think of that thing as 0:09:00.120 --> 0:09:02.440 and we don't see a whole backstory or a whole 0:09:02.520 --> 0:09:08.319 spectrum that actually encompasses it. If people understood that fundamentally, 0:09:08.360 --> 0:09:10.640 I think that would be a great starting point for change. 0:09:11.960 --> 0:09:15.000 And if there's anything else that needs to be mentioned, 0:09:15.600 --> 0:09:19.240 it's that there are really great service providers out there 0:09:19.280 --> 0:09:22.480 who have that specialist knowledge of what it's like to 0:09:22.480 --> 0:09:26.440 be autistic, of autism itself and all its different nuances. 0:09:26.880 --> 0:09:28.160 They need to be funded properly. 0:09:30.920 --> 0:09:34.199 So is the funding for the National Autism Strategy enough? 0:09:34.960 --> 0:09:36.280 That's coming up after the. 0:09:36.200 --> 0:09:46.280 Break, Grace. 0:09:46.400 --> 0:09:49.800 Let's talk about the funding for the National Autism Strategy, 0:09:49.880 --> 0:09:53.680 because there are these twenty two commitments in the strategy 0:09:53.760 --> 0:09:57.720 and there's forty two point three million dollars at least 0:09:57.720 --> 0:10:01.439 initially set aside to fulfill the commitments. 0:10:00.800 --> 0:10:03.319 Over a seven year period. Yeah, which breaks down to 0:10:03.559 --> 0:10:05.120 about six million per year. 0:10:05.320 --> 0:10:05.920 Is that enough? 0:10:06.640 --> 0:10:09.920 It's funny because you know, for the average Joe public, 0:10:11.880 --> 0:10:14.280 it's it sounds like a lot of money, you know, 0:10:14.320 --> 0:10:16.560 and in a way it is, but it has to 0:10:16.600 --> 0:10:19.319 go not just a long way but to it a 0:10:19.360 --> 0:10:23.240 lot of different places and where there's a possibility to 0:10:23.400 --> 0:10:28.320 directly inject funds into frontline services that are equipped and 0:10:28.360 --> 0:10:32.440 they're knowledgeable, they're ready. Otherwise they're just waiting on money 0:10:32.480 --> 0:10:35.320 to get resources to be able to lift themselves beyond 0:10:35.360 --> 0:10:36.640 crisis point and. 0:10:36.679 --> 0:10:37.640 Help more people. 0:10:38.840 --> 0:10:41.840 That's a great immediate action I think that can be 0:10:41.920 --> 0:10:43.320 taken and grace. 0:10:43.440 --> 0:10:46.160 This plan comes at a time when many people with 0:10:46.200 --> 0:10:48.920 autism are struggling to get the support that they need 0:10:48.960 --> 0:10:52.760 from the National Disability insurance schemes. So how should we 0:10:52.800 --> 0:10:53.839 be thinking about that? 0:10:54.640 --> 0:11:00.679 So as we speak, there are autistic children and aalgick adults 0:11:00.679 --> 0:11:04.079 who are being puted off the NDAs, and the NDAs 0:11:04.200 --> 0:11:08.240 is facing cutbacks in funding, and that's an existing support 0:11:08.280 --> 0:11:12.959 mechanism nationwide. So I think that needs to be looked 0:11:13.000 --> 0:11:16.880 at because there are many autistic people who need that 0:11:16.960 --> 0:11:20.240 support to contend with the world as it is. 0:11:21.400 --> 0:11:22.559 Then there's also the. 0:11:22.600 --> 0:11:26.480 Roadmap, you know, and this is more than anything, even 0:11:26.520 --> 0:11:29.400 though it's the Department of Social Services that are governing 0:11:29.400 --> 0:11:33.120 this particular initiative, really it is an issue of public health, 0:11:33.480 --> 0:11:35.839 you know. Part of why the situation is so dire 0:11:35.920 --> 0:11:38.600 for the autistic community is that we have been living 0:11:38.640 --> 0:11:41.319 so long in a neurotypical world and not being accommodated, 0:11:41.360 --> 0:11:45.439 and so our unmet needs are manifesting as a raft 0:11:45.480 --> 0:11:48.920 of different health issues. You know, mental and physical health 0:11:48.920 --> 0:11:52.280 are not separate. It's a whole body, holistic approach that 0:11:52.360 --> 0:11:53.160 needs to be taken. 0:11:53.800 --> 0:11:55.280 Yeah, and you kind of touched on this, but do 0:11:55.320 --> 0:11:58.840 you think that there is this risk here that a 0:11:58.880 --> 0:12:03.560 strategy like this becomes too bureaucratic and isn't really focused 0:12:03.679 --> 0:12:05.120 enough on the practical. 0:12:05.320 --> 0:12:07.679 Well, as an anarchist who's wearing a T shirt that 0:12:08.120 --> 0:12:10.920 literally tells you I'm an anarchist, I'm always going to 0:12:10.960 --> 0:12:14.439 say that a bureaucraatic document is too bureaucratic. There's lots 0:12:14.440 --> 0:12:16.439 of jargon that you've got to cut through to actually 0:12:16.480 --> 0:12:20.440 find the very direct actions and the ones that aren't 0:12:20.480 --> 0:12:24.520 just sort of you know, differently worded versions of a 0:12:24.559 --> 0:12:29.720 previous one, sort of wading through information that's interspersed with actions. 0:12:29.720 --> 0:12:31.840 You go like, all the actions are here, the information 0:12:31.880 --> 0:12:35.040 about autism is here, instead of it sort of like, 0:12:35.280 --> 0:12:38.360 you know, every point being given far too much context 0:12:38.360 --> 0:12:41.480 that's actually a repetition of context that's provided earlier in 0:12:41.480 --> 0:12:45.920 the document. I can't speak for the entire autistic community, 0:12:45.920 --> 0:12:49.559 but as a person who is autistic, I know that 0:12:50.040 --> 0:12:52.120 not just myself, but many close friends of mine who 0:12:52.160 --> 0:12:55.199 are also neurodivergent, we really appreciate that direct communication where 0:12:55.200 --> 0:12:58.280 there's no ambiguity, because there's a tendency, at least in 0:12:58.320 --> 0:13:00.040 my experience certainly, and I know that other friends in 0:13:00.160 --> 0:13:01.600 Minder like this as well, is that we will take 0:13:01.640 --> 0:13:04.400 things literally, we take things at face value, and we're 0:13:04.440 --> 0:13:06.719 not good at particularly reading subtext. 0:13:06.960 --> 0:13:09.280 Yeah, I mean, I think we could all be more direct. 0:13:09.320 --> 0:13:13.600 I often think that it's easy to hide in ambiguity 0:13:13.640 --> 0:13:17.160 for people, but also for governments, and sometimes complexity is 0:13:17.320 --> 0:13:20.559 used as a way to kind of provide cover for inaction. 0:13:21.160 --> 0:13:24.720 So I hope that the National Autism Strategy really means 0:13:24.760 --> 0:13:26.360 that they will be real change. 0:13:26.640 --> 0:13:29.480 I hope so as well. And again, even as an anarchist, 0:13:29.520 --> 0:13:31.839 I am very hopeful that this is this is at 0:13:31.920 --> 0:13:36.360 least a platform for change and for more specificity to 0:13:36.400 --> 0:13:39.439 be called for from the autistic community who really need 0:13:39.480 --> 0:13:41.160 to be leaders in this. And I think it also 0:13:41.200 --> 0:13:44.120 needs to be acknowledged that a lot of contributions have 0:13:44.200 --> 0:13:48.440 come from various autistic bodies and various autistic individuals, and 0:13:48.520 --> 0:13:50.320 that needs to be lauded, and that we need to 0:13:50.360 --> 0:13:54.520 make sure that the entirety of the spectrum, as best 0:13:54.640 --> 0:13:58.280 it can be, is represented, and that includes autistic people 0:13:58.280 --> 0:14:02.120 who are minimally speaking or in fact non speaking, you know, 0:14:02.160 --> 0:14:05.080 because there's a tendency to speak for them instead of 0:14:05.120 --> 0:14:07.920 speak to them and allow them to communicate in ways 0:14:07.920 --> 0:14:12.400 that are actually effective for them and accessible to them. 0:14:13.000 --> 0:14:15.240 Well, Grace, thank you so much for your time today. Yeah, 0:14:15.280 --> 0:14:37.080 thanks for having me. Also in the news today, the 0:14:37.200 --> 0:14:39.960 US markets are still recovering from a major crash in 0:14:40.000 --> 0:14:43.680 the tech sector sparked by growing concerns among investors about 0:14:43.680 --> 0:14:47.800 the future of AI technology. US tech company and VideA, 0:14:47.920 --> 0:14:50.800 known for producing the chips used in data centers, had 0:14:50.840 --> 0:14:53.880 almost one trillion dollars wiped off its value on Monday, 0:14:54.240 --> 0:14:57.640 the biggest one day loss in US history. The downturn 0:14:57.760 --> 0:14:59.960 was triggered by the launch of deep Seek, a China 0:15:00.240 --> 0:15:03.680 startups new AI model, which reportedly outperforms some of the 0:15:03.800 --> 0:15:07.400 US's leading models at a fraction of the cost. This 0:15:07.520 --> 0:15:10.800 development raised concerns about the potential impact on demand for 0:15:10.920 --> 0:15:16.120 nvidia's advanced chips and oceanographer and entrepreneur Tony Hayman has 0:15:16.160 --> 0:15:20.280 been appointed as Australia's new Chief Scientist. Professor Haymott will 0:15:20.320 --> 0:15:24.160 serve a three year term providing independent scientific advice to 0:15:24.200 --> 0:15:27.880 the government. When asked about the coalition's plans to pursue 0:15:27.960 --> 0:15:31.360 nuclear power, Professor Hayman said he thinks Australia should be 0:15:31.400 --> 0:15:33.120 open to any form of energy. 0:15:34.080 --> 0:15:36.960 I'm Ruby Jones. This is seven am. See you tomorrow.