Hello HSC Maths, we meet again

I actually don’t have nightmares about maths exams, though they caused me many years of stress and tears in high school. It’s English that keeps coming back to haunt my dreams – scenarios such as having to re-sit the HSC papers otherwise they’ll take my degrees and years of work experience off me because I wasn’t validly in them. Or something.

I got a peek at the Standard and Advanced maths exams while supervising them Monday. They were the old Maths in Practice, Maths in Society and 2 Unit maths subjects from before the turn of the century. I did two unit in year 10, so that content was 26 years ago for me… gosh. I should have dopped maths after the 3 unit paper in year 11, but no, I was convinced (by who IDK) to continue to 4 unit and the horrors that came with that orange text book. As I said to the other supervisors on Monday, I failed the 4 unit exam by marks but it still scaled to mid nineties, so yeah, I’m told it was worth the feelings of failure.

I also confessed to the other supervisors, when they were saying they don’t understand why anyone would try to cheat, that I’d cheated in one maths test once – a Maths Olympiad paper in grade five, the sort of maths competition where the content was part of the HSC syllabus but they threw it at primary school kids to see what they could do. I really don’t know where the pressure came from in primary school for me. I felt like I HAD to top that exam for my school otherwise I wouldn’t be doing what I was supposed to do. Just like how I cried when I didn’t “top” the Basic Skills Test maths (Think NAPLAN now) for my school. Even though it wasn’t a test that was meant to impact anything. This is also the girl who cried in Kindy cos she had to stay home sick because she thought she’d get behind, even though she was reading and comprehending at three years old.

Apparently I was more boisterous before Kindergarten and then my school reports from grade one started calling me timid. And I blame the strict Kinder teacher. While she may never have had to discipline me in her classroom, I saw what happened to other kids – she smacked them and put them in the store room and other things that terrified me – and that was enough to make me submissive and scared.

Isn’t it fun to reflect on what made you the way you are today?

Earnest and Overwhelmed – Teasing out the personal from the professionals this Homelessness Week

There’s a week for everything. Cancers, lupus, boys, thongs. This week is National Homelessness Week here in ‘straya, the lucky country, where there are no affordable homes to rent in most cities, let alone buy on the minimum wage, where we settled for mold-ridden shacks and ever-increasing rents rather than joining the ever-increasing homeless population. Sleeping in cars, in tents, on couches or garages, swags in the park until their moved on, but a nice little CEO sleepout each year will bring money and awareness to the charity sectors coffers.

My little granbaby turned one yesterday, having moved house three times already in her life, looking at another one soon. A young family needs to be able to establish roots, find some community and stability. You can’t grow let alone heal when you’re continuously uprooted, waiting for that email that says you’re on the move again.

NSW is supposedly strengthening their tenant’s rights, but they need to be enforced, and not have ben enforced by the little guy, the tenant who’s fighting to have a roof over their head. Landlords need to have consequences for being dicks about it all, and they need to know that it will cost them if they do lie about the reason for eviction or refuse to fix dangerous properties.

I’m tired and overwhelmed from yesterday. My car needs repairs. Well both our cars need repairs. I got some new kitties, bub got some too. I just wanted to take bub and her mum home and make them safe and warm and looked after but it doesn’t work like that, and it hurts.

I’ve been sick and now have passed it onto the boys.

I nearly had some paid work but that fell through, but I now have a working with children check completed and paid for so I can use that if something comes up. But that would involve me going for things. And I’m a bit of a spooked groundhog at the moment.

Groundhog Day, the Importance of Being Earnest. Movies we see over and over, comforting and just there. I’m told I’m Earnest, and I am there’s so much of the layers of the world that are needlessly there in my eyes. Why do we need to have all these layers? Whether it’s the extra layers of charities, meaning money is wasted at every step, or posturing and needing to seem to be doing good and being polite hen our actions are causing pain and suffering. So long as we’re nice about it. As long as the status quo and social cohesion is maintained, people’s rights can be eroded, their families sent away, the planet slowly destroyed.

Or quickly.

I probably should work towards getting that Autism and ADHD assessment, just to sort through it all more, know where I am. Or maybe I should just continue on my little way and slowly make this world my own.

Does my anxiety make you nervous?

I think this must come under unmasking as an Autistic person – making peach with some of my anxiety, especially when it doesn’t actually stop me from doing anything. Like, is my voice shaking? Sorry I mumbled, I’ll repeat myself, did I get my message across clearly this time? Awesome. 

Is my foot tapping and knee-bobbing a stim? Does it help the rest of my to focus, or have I had too much Diet Coke and need to get that out somehow? Or, have I been picking at a dry piece of skin or my scalp? That, I want to replace with something else or help calm it down because it actually can lead to other harms. I found that having 40mg of fluoxetine made those picking habits come back, but back on 60mg they’ve eased again. Not sure if that’s the only thing that I changed to make that happen, but the extra meds don’t seem to have harmful effects so I’ll run with it for now. If I notice myself starting to pick I’ll find something else to do with my hands, maybe smash out something here on on Twitter. Turn that nervous energy into words.

I still need to find a good oral stim, I do like chewing on soft drink bottle lids, and it really does bring me comfort. But they’re not always available and I chew them to death then they have to be thrown out. Gum doesn’t seem to be enough for me, it needs more resistance. Pascal Caramels when cold are great too, but since they’re full of sugar I can’t really rely on them. 

I’ve been using my under desk pedaller more, working off that need to move while I’m at my desk, especially in this cold weather. A walk is still so good, with its fresh air and sunshine, I miss running but it would take a bit to get my body back into that, especially with some residual injuries that keep nagging at me. We went bike riding on the weekend, that was good, I’m just a bit nervous on it, I did fall off before I even started, but after that I warmed into it. I’m sore though from using different muscles. Which means I need to go again soon.

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.

Spoiler alert: My GP didn’t go back to bulk-billing

Like, I wasn’t actually EXPECTING them to go back to bulk-billing pensioners, other concession card holder and children despite Labor members spouting on about the triple bulk billing incentive and how they were saving medicare and bulk billing and helping disabled people in this cost of living crisis. Or wait, they didn’t actually say disabled people, they only talk about us when it’s about us being all diagnosed with Autism and getting on the NDIS. 

So, I am again just before pension day with less than $20 to my name, because I had to hand over $69 this morning for my GP. Who is unfortunately moving to Queensland next year. Like, this might be a chance to attempt to find a bulk billing doctor near my new place, but ugh, I hate trying to suss out new doctors and feel like they actually want me there. 

We’ve been super stressed here with the move to, I was worried I was gonna take too long with the doctor today and have to pay for a level C consult, but fortunately we realised he could only give me my scripts, reassure me that things will be easier after the mood, and tell me it’s okay to take a little more Quetiapine til the move’s done since I’m so agitated.

I just wish it was all easier. And cheaper hey?

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