Happy Heartbreak High week to all who celebrate. Sure, for some people the important part is that Netflix has rebooted a popular 90s Australian television show (is now a bad time to say I don’t think I’ve actually watched the original?), and reviews are calling it ‘Euphoria meets Sex Education’, which are also shows that people like, but seeing Chloé Hayden play the beautifully nuanced and canonically autistic Quinni is the most affirming film and TV representation I think I’ve ever experienced. Ahh, it’s just so good! Anyway, moving on to newsletter #15.
The Overshare is broken up into seven sections: Listen Up–for all things auditory and musical, All The Feels–for sensory gadgets and neurodivergent products we are loving, Off The Shelf–bookish things including what we are reading and upcoming events, Uh Oh–life disasters, bloopers and social mistakes, Leaving The House–pretty self explanatory, Who Put Me In Charge–challenges in parenting, executive functioning, and life admin, and Scratch Pad–to share new writing bits and pieces. Let’s do it.
Listen Up
Kay: I recently listened to and enjoyed this episode about executive functioning, on podcast The Neurodivergent Woman. I have had this flagged for weeks (months?) after being sent the link from a friend, which I feel is perfectly appropriate for the topic at hand. The Neurodivergent Woman is hosted by clinical psychologist Monique Mitchelson and clinical neuropsychologist Dr Michelle Livock, and I find their style to be easy, accessible, and interesting. They have episodes about parenting, chronic pain, disordered eating, and sleep.
Anna: I feel like I haven’t listened to anything but World of Warcraft for weeks. Heroes crying out and critters making sweet warbles.
All The Feels
Kay: Nothing is better than a long, hot shower at the moment. I think my shower time probably directly correlates with my level of overwhelm and burnout 📈
Anna: I finally caught covid a few weeks ago. We were grateful to have minimal complications (yay for your vaccinations). Me? I scored a massive pain flare that is yet to subside. In fact, I’m wondering how many people will now understand whole body pain post-covid. I hope this brings a sense of understanding for what chronically ill people often endure. My coping mechanism is gaming in the morning so I communicate with friends/son, and couch time. I keep all my favourite things around me - sewing, pens and paper, origami and blankets. I have to love the space that allows my body rest or I build up mental frustration. Boredom is not an option! My skin needs downtime, my mind needs both television, and a craft for my hands. My daughters sit with me at various times and I’m present for them even when I can’t get up or do exciting things. Sometimes being there has to be enough.
Off The Shelf
Kay: *A content warning for discussion around mistreatment and abuse of autistic people*
I am profoundly sad about the appointment of Senator Hollie Hughes to the role of Deputy Chair of the NDIS Senate Committee. Not only does Ms Hughes, as the parent of an autistic child, have a horrific history of mocking, speaking down to and over autistic voices, and trying to turn self-advocacy into a polarising issue of parents vs autistic adults, we also have a disabled Senator, Jordon Steele-John, who would have done an incredible job. Ugh.
I wish Ms Hughes, and anyone who is afforded a position of power in autism advocacy, would read We’re Not Broken by Eric Garcia. It is an incredible work of non-fiction by a US-based autistic journalist, that dives into the history of autism, and how we have ended up at this particular point. What Eric spells out so clearly is how autistic people were left out of the wider disability rights movement in favour of hearing from parents, and the flow-on effect that has had. This is because the origins of autism diagnosis begin with professionals blaming parents, ‘refrigerator mothers’ and the like, for their child’s autism. So autism was framed as an awful thing that could happen to your child, and it was your fault if it did. The early days of autism advocacy grew out of that, with parents reclaiming their power. There was a lot of good that came from that, but it also meant that autism continued to be framed as a horrific ailment that ‘kidnapped’ normal children, which meant there was a greater willingness to support things like institutionalisation, and a variety of abusive treatments. You don’t have to look far to find echoes of that in the present day. Parents are forcing their children to drink bleach, for goodness’ sake. Two quotes I keep coming back to from this book, are:
The problem with focusing on the parents of autistic people instead of autistic people themselves is that when these two sides clash, society tends to sympathise with parents.
and
(Autism) is a disability the same as any other, and while it requires work, it should not be described as the end of the world; to do so is to compare your child to the apocalypse.
Anyway, that is my rant about where things are at with autism advocacy, and why Hollie Hughes is such a dangerous appointment to this role. If you have the capacity and feel strongly about this, please contact your local Member, or Bill Shorten’s office. He is the Minister for the NDIS. And I can’t recommend Eric Garcia’s book highly enough.
Anna: I’m going to leave this with what Kay has written, as she says it all so well. I’m grateful for her strength to engage with current politics.
Uh Oh
Anna: I’ve been enjoying a reality TV show called ‘Alone’, where each season they send a bunch of people of into the wild and let them survive for as long as possible. I have only watched the European versions (Norway, Sweden, Denmark) as the swearing is one thing for my nine year old, but swearing in English seems much harsher! There’s also no hunting allowed, only fishing. They can quit at any time my pressing a ‘pick me up’ button, and they don’t know when another person leaves, so it’s very much a battle to stay as long as they possibly can while being hungry, cold, and alone. The last person to quit wins. I’m low key obsessed with these sorts of adventures, and spend much time yelling at the screen when they don’t build a shelter or put out the net when I think they should. One person, Stine, in the Danish version is austic/Asperger’s (as she identifies) and I just love her so much. When her boot filled with water and her sock was all wet I nearly cried! In freezing temperatures of Northern Norway it would have been soggy and dangerous all at once. She talks to herself in the same way I do, and I realised how the others weren’t quite the same… and then felt all the warm fuzzies of seeing my way of being on screen. Now, why is this in Uh Oh? Because it makes me desperately want to go and start fires, eat everything, and be alone. Not a great thing at this point in my life, lol.
Leaving The House
Kay: I left the house earlier this month to go to Brisbane and launch Rhiannon Wilde’s latest #LoveOzYA release, Where You Left Us. It was a wonderful night at Avid Reader (has there ever been a bad night at Avid Reader?) and I am thrilled to have been and about for such a lovely time. I am also always thrilled when events are both in-person and available online. Accessibility is important, and I love to see it being treated as the norm rather than an add-on.
That was my last public event for the year, and at this stage my next one is not until April, 2023. I really need to focus on rest before my next book comes out, because I am burnt. out.
Anna: Isolation during covid means I haven’t been out much! I missed this launch - so sad. Since being not-contagious I’ve had a visit from my niece. She lives in Germany nowadays and it was absolutely wonderful to catch up. We had big talks about sensory issues and options for people who like to eat non-edible things (a bit like pica, but perhaps not so severe and more a desire to feel the texture in the mouth). I’ll pop some of these in the next newsletter. I guess in my head I visited Germany….? Haha, my sections are all skewed this edition!
Who Put Me In Charge
Kay: One thing I have been thinking a lot about lately is how being a neurodivergent parent can mean diving back into systems that chewed you up and spat you out as a kid, this time as a parent hoping to make things better for your own child. It is really confronting (and exhausting) work! I feel lucky to know other neurodivergent and affirming parents who are navigating these spaces at the same time, so I have support that a lot of other parents do not have. And I think about the people doing it with greater career and financial pressures, other kids, non-supportive or non-existent partners, and less time. Time is such a huge element–time to do the research, make the phone calls, send the emails, schedule the meetings, process it all and then do it again. In my circle, there have been both beautiful moments of inclusion and horror stories of exclusion, as well as so much parental and child shaming.
I saw this research floating around on Twitter recently, about how better teacher-student relationships lead to better engagement for autistic students. It sounds completely obvious to me, that when teachers prioritise connection with a student, and make sure they feel safe and heard, those students will be better able to learn. But just because it is obvious to some of us, does not mean it is what is happening in classrooms. Knowing your child’s rights when it comes to education is a great starting point. I honestly did not know a lot of this until very recently.
Anna: I’ve had to lean on my kids more and more during this epic post-covid pain flare. I get them to go into shops for me while I wait in the car catching pokémon, or ‘help’ with dinner when it’s legitimately because I can’t lift the pots full of water to strain the pasta. I’m grateful to them, but also feel much shame. I understand how useless and yet destructive shame can be, but I’m unsure how to shake it. Feeding your family is a fundamental part of parenting, and for the last few years I’ve avoided and delegated this task, leaving me feeling a bit useless to be honest. I know, I know, there’s not choice and I’m privileged and lucky in so many ways, but still. Feels a bit crap. Not very chirpy! And yet, disabled life can just suck sometimes and it helps me to admit it.
Scratch Pad
Kay: I love this piece by autistic writer Amanda Tink for The Conversation, about how Les Murray’s poetry reflects his autistic brain.
I also enjoyed this piece by Patrick Marlborough in The Saturday Paper: Nathan Fielder’s unsettling show The Rehearsal is like a three-dimensional representation of autistic thinking. I haven’t even watched the show, but I have read a lot about it, particularly in relation to whether or not Nathan Fielder is autistic, so I found this to be an interesting read.
Thanks so much for sharing that Saturday Paper piece! It is the essay about The Rehearsal and autistic brains I have been wanting to read (or - the very closest thing so far … and I have been searching).
Another great issue. Anna, I’m so sorry you’ve been so unwell. xo
Thank you, as always, for your words. It makes me feel kind of like I’m sitting down having a conversation with you both. I nod and smile (or frown) along with you xx