Let’s look at the Draft National Autism Strategy

So it was Autism whatever day yesterday, so the government got to announce what they’re gonna try to do to make sure there’s no immediate Autistic Uprising. One of those things in Australia was announcing the Draft National Autism Strategy, which I’m going to read through and react to here.

Before I read it, what do I want?

  1. Timely, affordable assessment and diagnosis of Autism and related conditions like ADHD. Ultimately free to the person being assessed, paid for by the government in full, not by crowdfunding. Preferably without an upfront cost that needs to be claimed back. I ‘member the olden days (early 2000s) when kids could get assessed and diagnosed free, and sometimes even adults could.
  2. Support for teachers and schools to include Autistic kids how they need to be included to learn. The feds will palm this off to the states, but schools need to be supported to include all kids in their local schools. They should be provided with the staffing and physical resources needed – space, suitable classrooms, flexibility in policies around attendance and “discipline”.
  3. Family support. Why is everything such a struggle? Recognition that Autistic kids probably have Autistic/ADHD parents and siblings. Whole family approaches to providing supports and funding, not making it a fight for everything, trusting that people know what help they need, but also presenting them with options if they’re not sure where to start – NDIS is too gatekeepy with new families having to ask for specific things that they need but don’t know exists or that they’re allowed to use their funding on. I miss the early intervention social workers I worked with in Canberra who knew every support available and how to get families into these.
  4. Mental health supports across all ages. Basically unlimited psychological supports that people can move in and out of as needed and not just when there’s a crisis. Suitable crisis care – crisis care that actually acknowledges Autism provides guidance on how to get support for that as an underlying thing, rather than just treating the apparently borderline personality disorder, eating disorder, suicide attempt or addiction.
  5. Support to get financial security. Money to start businesses because we’ve probably got good ideas, support to learn how to do the business parts so those ideas can be sustainable. Mentorship – whether in large and small workplaces or in our own ventures. Requirements for government agencies and businesses to understand us and accommodate our needs, and that that is different for each person. You think we’re the rigid ones? We just tend to know after awhile what works for us. Of course I’m gonna say welfare payments above the poverty line, because things don’t always work out and a true financial safety net means not starting from scratch if we go into burnout or have a mental health crisis.

That’ll do for now. *saves draft* let’s look at this thing. Commitments The commitments relate to areas of Australian Government responsibility. Feedback from the community on issues relating to states and territories has been shared with state and territory governments. In any areas of joint responsibility between the Commonwealth and state and territory governments, the Strategy will guide the Australian Government’s engagement with jurisdictions. Social Inclusion 1. Improve understanding of, and change attitudes towards, Autistic people across all of society, through: a. Greater public education and awareness including a better understanding of autism within workplaces, and with a focus on health, education and the criminal justice system. b. Increasing visibility and representation of Autistic people in the media, sports and the arts. c. Increasing accessible and sensory-friendly public and online spaces. d. Increasing the capability of advocates and advocacy organisations to challenge and reduce stigma of autism. 2. Increase opportunities for social connections and peer support. 3. Improve Australian Government service delivery, communication, and information to meet the needs of Autistic people. 4. Ensure consideration of the needs of Autistic people in future amendments to or reviews of the Disability Discrimination Act 1992 (Cth) and associated disability standards. 5. Improve the safety and welfare of Autistic people through the reduction of all forms of discrimination, violence, abuse, bullying, vilification and exploitation.

Of course it starts with reminding us it’s only about what the Commonwealth government wants to do and that while they’re gonna put more responsibilities back on the states, they won’t make them do particular things in return for funding and good luck to you.

Social Inclusion: Ooh good it includes the criminal justice system as needing to better understand Autism. Obviously we want help before that stage in education and school.

Visibility in media – so more characters on tv, or actually autistic actors or exploitative ABC reality shows? I’m curious about how that one about the ACCR autistic journalism cadets is panning out :/

Sensory friendly spaces – I SWEAR the Services NSW has their radio up  deliberately loud outside the quiet hours. Can we just ban commercial radio in public settings? And have Coles radio on low enough that it isn’t painful? more benches in quiet places where I can sit with my shopping til it’s bearable to go back.

Capacity building for advocates – um, fund advocacy organizations, an not just the ones who tell you what you want to hear? And not just around stigma, but about supporting people to access your services, get your funding for therapy, fight your tribunals. And fund legal aid.

Connections and peer support – how we want it, give us the money to run lego and minecraft and flower arranging and train spotting and and anything groups, don’t give it to neurotypicals to babysit us. Train Autistic audits to support younger Autistics and run peer support.

Legal stuff – enforce the antidiscrimination laws we already have, actually penalise people and businesses if they break those laws. Stop letting them please financial hardship – start with government agencies hey?Economic Inclusion 6. Increase meaningful employment opportunities (including business ownership, self-employment, entrepreneurship and social enterprise) for Autistic people. 7. Support employers to hire and retain Autistic employees through improving the accessibility of recruitment processes and fostering workplace environments that are safe and inclusive for all Autistic people. 8. Improve the supports and services available to Autistic people to ensure they have choice and control over their education and careers. 9. Increase representation of Autistic people in senior and board positions to promote people as visible role models. 10. Improve inclusive practices and the quality and accessibility of advocacy resources for Autistic students across all education settings, and their families, carers and support networks. 11. Build on commitment 5 Improve the safety and welfare of Autistic people through the reduction of all forms of discrimination, violence, abuse, bullying, vilification and exploitation to specifically focus on Autistic students in all levels of education.

Economic Inclusion: All great ideas. But they all need enforcement when they are legal requirements. ACAB, but perhaps an Autistic-led way of enforcing the antidiscrimination laws and educational requirements and so forth? They also just need to give us more money and trust that we generally know what we wanna do with it. Welfare above the poverty line as a true safety net. The right to housing. The right to education. Human rights.

The first one about supporting Autistic people to have their own businesses. It needs to go further than a year of the NEIS Centrelink solo business program that doesn’t actually give you any money to start your business. Grants for Autistic people to start businesses, to employ others. Sometimes we just need to be supported to include each other.

iagnosis, Services and Supports 12. Consider the use and consistency of current identification screening, outcome and diagnostic tools. Work with relevant professional bodies to develop a set of standardised co-designed training/professional development and resource materials to support professionals involved in the identification, assessment and diagnosis of autism to improve the experience, and quality of this process for Autistic people and their families and carers. 13. Develop a set of best practice resources to support Autistic people and their families, carers and support networks through the identification, assessment and diagnosis process. 14. Explore ways to improve access to primary care, including through the Medicare Benefits Schedule (MBS), to: a. improve quality health and mental health services for Autistic people, with a focus on continuity of care, and b. explore ways to make Autism diagnosis and assessment processes more timely and accessible. 15. Consider early screening and identification arrangements, and improved access to health professionals.* * Consideration is to be given to how this commitment links with joint work being undertaken by the Australian and state and territory governments as part of Australia’s Disability Strategy 2021-31 and in response to the Independent Review of the NDIS. Details on work to meet this commitment will be developed in Action Plan/s. 16. Improve access to quality, timely, neurodiversity-affirming and equitable supports and services for Autistic people, including for people living in rural, regional and remote areas. 17. Encourage greater representation of people with lived experience in delivering supports and services to Autistic people. 18. Develop a set of best practice training and resource materials for people providing services and supports to Autistic people. 19. Explore the feasibility of a decision-making tool to empower Autistic people to make informed decisions about all areas of their life. 20. Work with states and territories to improve service integration between the NDIS, foundational supports and mainstream services.

Diagnosis, Services and Supports: Make Autism assessment free somehow – whether through brining back the government assessment teams or directly funding assessment by private providers through bulk-billing Medicare items at adequate rates that mean the providers can provide them on demand. Rebated Medicare items lead to people who can’t front the money missing out, and guess what, Autistic people and their families don’t have the cash lying around.

There’s a LOT of resources out there on what is best practice. Scrap funding for ABA. Funding for services beyond the capital cities and major centres is still lacking and a constant difficulty for all disability and health services – more funding through the education services might be a way to reach out to more places, trained teachers in mainstream early childhood settings and schools who can liaise with “specialist” supports and know where to get support.

“Greater representation” of Autistic people / lived experience – this needs to go back to workplaces and training programs being safe for Autistic people and accommodating, they need to accommodate us at the undergrad level of teaching, speech pathology, occupational therapy university programs. It needs to be okay to be neurodivergent in University and TAFE. It needs to be safe to disclose at those places or in workplaces and to have bad days as a therapist. Mask on or off, we need to be supported.

Supported decision making support is lacking across the NDIS. People are being blamed for their providers taking advantage of them where they should have been supported to make their own decisions around support and purchases that affect their lives.

Governance 21. Develop a governance framework to support: a. strong accountability mechanisms, b. co-leadership and active involvement of Autistic people, as well as parents and carers, and professionals within the autism sector, and c. whole-of-government, cross-sectoral and coordinated approaches to implementationResearch
22. Explore how autism research can best be fostered and applied to policy and service delivery and
underpinned by the Strategy’s Guiding Principles.
Evidence
23. Develop a National Autism Strategy Evidence Framework, including a Theory of Change,
Program Logic, Outcomes Framework, and Evaluation Framework.
Evaluation and Reporting
24. Develop a robust Evaluation Plan and reporting mechanism, co-led by Autistic people and the
autism community, for the National Autism Strateg

Governance, Research, Evidence, Evaluation and Reporting: OMG ACCOUNTABILITY. Please stop saying you’re going to fix something, ask opinions on things, consult with people and then never follow up, or hold yourselves accountable. Closing the Gap, for example. It’s just a report each year on how much worse things are getting for most First Nations people, rather than a review that you act on to change what you’re doing.

You’ve on page 8 “Nothing about us, without us”. You know that means more than just consulting? It means actually implementing our ideas and not saying that you can’t because it’s too hard or expensive for the neurotypical and non-disabled people. I need to look at who you have on these committees but I trust in the Autistic members to unmask and tell it like it is. You may be uncomfortable, but when the Autistic people who can’t speak up for themselves are still being abused and neglected and the systems are upholding the abusers rights through funding them or listening to them over us, we get angry and you’ve given us a chance to fix that, so you’d better change things.

It’s not a completely terrible read, so read the plan if you’ve time, but again if they don’t follow through with action and funding why bother?

Listen to us, give us money to do the things we need to do to live, fund our supports, teach us how to identify our needs, trust us.

How being on the DSP has allowed me to stabilise my mental health

I was approved for the disability support pension about two years ago now. It wasn’t a straightforward process, and I was initially rejected, with my request for a review going through successfully without any more information from me. So, how has being on DSP improved my quality of life?

Slightly more money – the partnered DSP rate is currently $826.70 per fortnight, $140 more than the $686.00 I’d be getting on JobSeeker. (source DSS 2023) The difference for singles is more – $347.50 a fortnight extra to use to pay for the basics of life, costs which all agree are more with a disability – studies showing that you need at least 50% more disposable income to live with a disability in Australia. Not that any of the DSP gets to be disposable.

Getting off the Disability Employment Services radar – I’ve had a lot of exemptions from job searching in my time on payments, so for me this meant there was no looming date where I’d have to reengage with DES or have to get a correctly written medical certificate from my non-bulk billing doctor to have them waived again. This was a huge stress relief, not having to apply for jobs I wasn’t ready for, and not having to show up to fortnightly appointments to talk about how my life was falling apart this week and how a minimum wage cleaning job was clearly what I needed to fix my mental health.

Did you know under-35s on DSP have mutual obligations these days? Any disabled person who is failing to meet their “obligations” and getting cut of their payments is clearly being failed by the services that are supposed to be supporting them.

TIME and SPACE – time and space to do the therapies that I was already involved in. When I got DSP, I was doing 4 sessions a week of various therapies – individual and group – for borderline personality disorder and alcohol dependence. I could now just focus on these for awhile. So, I certainly wasn’t sitting at home on DSP, I was doing therapy in person and online, I was practicing getting out and about into the world again after a breakdown that coincided with Covid routine changes and added stresses. I’ve been sober 3 three years now, and certainly the support of having the DSP and not having to meet others expectations around employment have let me maintain that even amongst the rest of the chaos that life brings.

Time and space to figure me out and pursue my own interests and use my skills. I also started to learn the confidence to pace myself properly – I had a therapy goal that was basically following through on things I committed to. Which is two sided – both not chickening out with anxiety or low energy when it all gets too much, but also not letting it get to much – knowing my schedule, knowing how much and what sorts of things I can commit to and only pushing myself as far as I should go. Not saying yes because it’s expected of me, but giving things a go and seeing if they do spark joy. It’s amazing how much energy expenditure varies when you are following an interest!

Time and space to prioritise my “little routine”, allowing myself to see getting up and dressed or putting away the washing as an achievement, and being happy with my day. If I get my little routine together, if I do my chore, make my dinners, then I have more time and space mentally and practically to do more of the things that are generally seen as productive – supporting friends and family, writing and advocacy, maybe even doing a little bit of paid work here and there!

There’s so many goals I’m starting to see as achievable for myself after having this period of self-stability. It’s allowed me to try new things, put my hand up to do things I care about and feel are important, with the knowledge that I don’t have to meet someone else’s expectations to get paid each fortnight. I don’t know if I’ll make it back to earning enough to no longer get the pension, I’d love to do more, be more independent financially, actually have a disposable income, but I have time now. Time and space to dip in and out of the outside world as I can in a way that is of benefit to both myself and everyone else near and dear to me.

I’m certainly not “fixed”. I’m starting with a new psych, but being on DSP means that that would be prohibitively expensive if I hadn’t been able to get in with one that I can see for free for 10 sessions, but only on a Thursday and only from April. I also need to properly explore my neurodivergence, somehow find the energy and the money to get assessed for Autism and ADHD, especially if that would help me at all when it comes with getting even more okay with living in this world.

Just needed to breathe.

And Liptember is OVER!

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So, Liptember is over for another year, and I’m happy that I met my fundraising target, and that I wore lipstick every day, and I tried a few new things, but I’m also tired. Why tired? Well because people around me are. Because while it’s fun to do fundraisers, it’s hard seeing people around you not being supported with their mental health. People accessing all they can – the Medicare rebated psych sessions, medications, GP visits – but that not being enough to make any headway. My sister will feel I’m calling her out with this, and while I am, it’s also half my Twitter feed and a bunch of my Facebook family and friends. They do what they need to to tread water, they maintain, they get things done, they keep on being alive, they keep doing the appointments they have to, to work days, the welfare obligations. But they don’t really get ahead.

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I’m certainly not ahead either, myself, I just managed to get myself to a point where I could convince the government that they were better off giving me DSP that trying to get me into a job that I might just throw away at the first sign of trouble. I had the privilege of being able to front up the cash for private psych and OT, to be able to get into the therapy program that made a difference but wouldn’t “fix” me, to get the reports from the private OT that got me over the line for DSP. So that now I can jump in and out of the real world as I see see fit with a safety net of not losing my DSP backup because I tried and failed at something.

I’m not yet at the point of wanted to do paid external work, but I’m participating more outside myself – I’m more involved with my local Greens’ group and the events and meetings they have, I’m more active online, I’m experimenting with more social media avenues and with Twitch streaming. I’m dabbling around to try and find what I like, and hopefully being useful in the meantime. I’m doing my e-girl and activist things and I really like that. Those things excite me, being online, trying to make a difference, either together or separate, but also just figuring out me.

While also being able to be there for my partner and my sister and their kids. Helping my stepkid get into the right therapy, taking my nephew and niece to appointments, babysitting the little ones, being a sounding board for my sister, making my partner lunch and dinner and keeping  a clean and ordered house so we can relax together in the evenings. Playing with my dog, getting the kids used to a dog. Helping the children learn to be themselves and grow and explore their lives.

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I’m doing what I can and mostly what I want to do and while I’m tired, I like it. I like me.

You can still donate til the 15th for my Liptember, and I’ll wear the lippy of your choice one day 🙂 I still don’t have yellow and threw out a few over the month, but there’s still way too many to choose from.

Back to face to face therapy – also don’t scare me like that Centrelink!

I did it! Made it into town, did my first face to face psych session in 6 months, first time I’d seen this therapist in person since the assessment 18 months ago, and yeah, did it.

Verrrrrrry zonked this afternoon, but let’s see what I remember of the day and I get going.

Didn’t sleep great, that’s a little expected, got up after waking a few times a bit after 700 and made coffees. Sipped on that, did the breakfast and meds thing. Now I’m wondering whether it was today I made Bruce toast with his second coffee? I think so, the bread was soft. Unless that was last night? Blur I tells ya, there wouldn’t have been coffee though last night, so I think it was this morning.

Drove to the station, walked down the stairs as the earlier train pulled in, so hopped on that.

Two stations in it clicked that I was meant to have a mask on. Whoops.

Made it to Newcastle interchange. Most of the toilets were closed off, but I didn’t actually need to go and the tram was there so I caught it to Crown street to walk through the mall and see how it was going.

Took some pictures of the changes, like to the old David jones building. Bought some cards.

Sat outside the post office, wrote in a card for my old OT whos report I think got me over the line for DSP. Then walked up the hill to the hospital.

Reloaded my vaccination certificate and the service NSW app. My third vax still isn’t on Medicare, I guess I should ask the chemist about that…

Went in, mask on. Receptionist – I said hi and said who I was, she wounded familiar from the phone. Some of the mental health receptionists have the best manner. Very mum-like but businessy enough. Some suck. This one rules. She makes me feel like my calls aren’t annoying . Always good for those of us with rejection issues.

Oh speaking of rejection issues, starting to feel a little like I have to come up with more problems so that my therapist doesn’t think I’m doing too well and says I don’t need to continue with the service. I mean it’s nice not to be crazy erratic, but I do have things to work on and I’m just getting into this doing things again.

So into the session. OMG so sweaty. Glasses fogging up. Had the window and outside door (to the balcony, old hospital all that) open for covid airflow reasons. but I’m this hot mess of SWEAT.

At one point he asked how I was inside, and honestly I wasn’t a mess inside, it was all outside for once. Still masking to high heaven. Wonder if that’s easier with actual masks or not. Time will tell. I don’t really try too hard with my short appointments at the Mater to get my antabuse, they see me as I come that day for that few minutes. And keeping coherent for 5 minutes is easy. But a 50 minute psyc session? Yeah I can do it on the computer. Easy. But I don’t want to. I want to drop the mask and therapy properly. I guess raising masking vs opposite action will be something I bring to the agenda next week. I need to bring more stuff so why not that? Also works into my working up to raising whether I’m autistic. As will telling him about the yellow ladybugs autism and adhd conference in June.

I know I should do it, at least actually get a professional’s input. Especially while have this access. But I’m scared he’ll think I’m so off target or I’m making stuff up or something. I don’t know. I still have to build that trust I guess.

He brought up the reminder that we were going to talk more about work options, I asked if I told him about my DSP approval, he said I hadn’t but he was glad I got it even though his report wasn’t helpful because he’s so set on DBT being amazing and me being a good candidate for change.

Which brings me to Centrelink and them calling me to upset me on the train on the way home.

As I wrote on FB to my sister

I have to provide bruce’s profit and loss statements, but they called me to tell me on the phone on the train on the way home today and it was a shock and I cried and didn’t get all the info and she said to call them back later if I wanted to check, but yeah. I got an answer on twitter though and theree’s a letting in the mail I can wait for

So yeah, have to do his income side of things. When the lady said why she was calling she said she was assessing my DSP claim,, and I was very shocked and very much thinking it was god to go. It took a few times to explain to me it was to approve me eligibility on the income side – ie whether Bruce should be my keeper because partner income and asset test crap. The phone dropped out in the Cardiff tunnel too which didn’t help. And THEN she said to just call back and she’d made a note on the file of what forms to complete and they could tell me again, and so i did after lunch and I wasn’t able to verify my identity with my voice and they weren’t understanding my responses and maybe I wasn’t that coherent by then? but I asked for operator then was told they were busy and to do it online and they hung up.

Thankfully I got an answer to my cries on Twitter. God I love the social media teams on there.

So I’m more than done.

I played Animal crossing and wore my Hello Kitty hat and shoes that came with teh Amiibo cards Yieki gave me. And I made pasta for dinner.

And I’m sooooooo tired.