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?
- 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.
- 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”.
- 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.
- 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.
- 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.
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: 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.
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, 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.