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Why Does Autistic Representation Matter in Books and on Our Screens? This is Why.

A lot of people (Autistic, mainly) have messaged me to say that The Wonderful Thing About Phoenix Rose made them cry. Sobbed, even. This surprised me, honestly, because that’s not the vision of the book I hold in my head. Overall, I consider it an uplifting book (as do the reviewers). There are some painful moments in the book (it wouldn’t be a story if there weren’t) and many of them were painful for me to write. But as is my style as an author, I surround the pain with life affirming goodness so as to stay on the side of ‘complex’ rather than ‘distressing’. But I get it now, the pull towards tears, because this happened.

Yesterday, neurodivergent social worker, Joanne Hatchard, of Better Being Me – Neurodivergent Family Therapist posted this reel to Instagram and Facebook and it made me cry. Why? Because she was able to articulate so clearly why I wanted to write this story and why Autistic representation matters and our community is so hungry for it.

You see, we (the Autistic community) know there are many books out there with neurodivergent main characters. We know it because we can see it and we can see the signposting that the author has built into it, whether they are aware of it or not (I have definitely written Autistic characters into my past novels without realising it), and sometimes these books are massive bestsellers. Global bestsellers. Oh, the irony of readers loving these “quirky”, “socially awkward”, “different” characters on the page… but not so much in real life, a point mega children’s author, Sally Rippin, also makes in her non-fiction book, Wild Things: How We Learn to Read and What Can Happen if We Don’t. Some examples that come to mind include Anne Shirley (overwhelmingly cited by the Autistic community as a classic Autistic/ADHD character) and Pippi Longstocking.

But my Autistic community is not benefiting from this because we have not been identified. It bites, frankly.

In a perfect world, we would never have to identify or explain anything to anyone. We would all simply be accepted exactly as we are and when we ask for help we get it, without having to justify why. Sadly, the world is not there yet.

We need to start identifying Autistic and ADHD characters on the page. We need to explicitly connect their wonderful qualities, curiosity, bravery, compassion and empathy with the word Autistic because if we are deliberating cloaking Autistic characters under euphemisms (of usually narrow, stereotypical traits) of “walking to the beat of their own drum” and “fixated on routine” and such we are shaming Autistic people.

If we don’t name it, we shame it.

Joanne’s amazing words capture it in 90 seconds. Please, click the image to hear her say the words so many of us are craving.

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Orion Kelly and I Sat Down for a Chat

I had a great chat with YouTube star, Orion Kelly (That Autistic Guy), about what terrible travellers we are, late autism diagnosis, writing neurodivergent characters, planting seeds of change through The Arts… and more! You can watch it now and marvel (as I do) at how much I talk with my hands… 🙂

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The Wonderful Thing About Phoenix Rose: Out Now

Today is the day that The Wonderful Thing About Phoenix Rose lands out in the world for your to read. And to celebrate, I’m just going to leave you with this quote that my publicist just sent me and I have to say it has made my day.

Josephine is proving to be the go-to voice for warm, funny and vibrant stories – and this novel about a woman who is tasked with driving a car load of eccentric animals from Tasmania to Brisbane is an escapist’s dream!

Woman’s Day

If you’d like a copy, here’s a few online options:
QBD
Booktopia (signed copies available here!)
Dymocks
Amazon
Angus and Robertson
Collins

And more here….

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You Asked: The How and Why I Lost 30 Kilos of Body Weight… It’s Almost Definitely Not What You Think.

Many people have been commenting on and asking me about my weight loss. People in town in the shops I regularly visit. People who haven’t seen me for a while. Friends who’ve noticed things changing in the photos that I post to Instagram or Facebook. And they have a lot of questions. The funny thing is that I have been losing weight steadily for 7 years now but people have only recently begun to get whiplash when they see me.

Essentially, they want to know how I lost the weight. So, I’ve written a comprehensive answer, because it’s not been an easy question to respond to in one line while standing in the checkout queue at IGA.

For me, it’s not terribly interesting that I have shed weight; the far more interesting question is about how the extra weight got there in the first place. I think people probably have a narrow judgement about that, presuming it was from too much food, lack of exercise and a sedentary job. The more interesting answer, though, is that at no time have I consciously changed my diet (either while gaining weight or while losing it), nor have I ever embarked on a new exercise routine to lose weight. Nope, none of that.

I am someone who experienced two miserable, painful, crushing years of disordered eating and, once through it and out the other side, I have never once allowed myself to manipulate food or exercise for any specific weight-related purpose. I cannot do it. I will not do it. It’s like being a recovered addict, I guess. I simply cannot ever go back to anything that resembles food/exercise control, portion sizes, calorie counting, weigh-ins, tape measures or anything like that. For me, diet culture and weight fixation is triggering and deeply uncomfortable. I am always interested in a loved one’s health, of course, but not the perseveration over ‘weight’.

Okay, back to me. What has actually happened? (You can scroll to the bottom for the TLDR section if you don’t like details.)

Well, this goes back a long way (more than thirty years), back to when I was fifteen. That was the year my autoimmune disease began. It’s called ankylosing spondylitis. Like all autoimmune conditions, it’s rather nasty. Its aim is to “remodel” my spine, which means: damage it, break it down, inflame it, fuse it where it shouldn’t be fused, grow bits where there shouldn’t be bits, cause terrible sciatica, fuse the sacroiliac joints… and for kicks and giggles it expands its territory to include other joints and soft tissues as well. Because medical ‘experts’ used to believe that women didn’t get ankylosing spondylitis (gosh… that gender prejudice is an exhausting and repetitive tale of medical woe), I was dismissed. I was gaslighted by doctors for years, told I must simply be depressed, signed up for thousands of dollars of ‘essential wellness’ tools, or told by new age healers that I had chosen this for myself and only I could make the choice to be well.

Sigh…

Then, at forty years of age, a good (female) GP referred me to a different (female) rheumatologist who quickly realised what was going on. Scans were ordered and by now, the damage to my spine from a quarter of a century of this rampantly unchecked autoimmune disease was so irrefutable that I finally received a correct diagnosis and, importantly, the correct medication.

You see, because I had never been diagnosed correctly, over the decades, I had been given all manner of pain modulating medication which, you guessed it, made me put on loads of weight. One of those medications took me four months to wean myself from due to the horrendous withdrawal side effects. It was a nightmare.

Now, The Too-Long-Don’t-Read (TLDR) Summary of My 30kg Weight Loss Story

  1. I had a serious auto-immune condition that started when I was 15 but I was misdiagnosed for 25 years.
  2. In those 25 years, I required more and more pain medication to control the damage that was being done to my spine and body. These medications made me put on weight, made me dopey and sleepy and messed with my brain.
  3. At 40 years of age, I finally got the correct diagnosis and importantly the correct medication. This (practically magical) fortnightly injection does not make me put on weight and it improves my spine function and mobility so I can be naturally more active.
  4. When I stopped taking the wrong medication, I began to lose weight, with no specific intention (because I refuse to ever again be controlled by thoughts of weight and weight loss). I lost roughly a 1kg a month consistently for over a year.
  5. Interestingly, for a while after discovering I am neurodivergent, I lost more weight (again, at about 1kg a month) for some time. I have no explanation for this but (half) jokingly refer to it as my ‘Autistic weight loss’, perhaps the result of shedding decades of pain and shame from not knowing my true self. You never know…
  6. Things got twisty again last year when, for several months, I lost my appetite and couldn’t look at food and felt like I had morning sickness all the time and generally just felt I couldn’t cope. I was also hysterically thirsty (I literally couldn’t sleep because I couldn’t swallow!) and exhausted and I was dropping weight. I had tests to rule out diabetes, iron deficiency and liver function, which were all normal. Both myself and and the GP put it down to the side effects from having started ADHD medication. But we were wrong.
  7. When I saw a different GP about these symptoms (as I was worried no one was taking them seriously enough), she suggested trialling low-dose hormone therapy… and just like magic, all those symptoms went away.
  8. I have been eating as usual now since December last year (I no longer feel sick and am not ridiculously thirsty) and my weight has been stable for months now.

That’s it in a nutshell.

You asked… I’ve answered.

Jo X

(P.S. I have deliberately not provided before and after pics because, as stated, that kind of culture makes me feel queasy and triggers parts of me I’d rather not invoke.)

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April is Autism Awareness and Acceptance Month. Here’s What You Can Do As An Ally.

Autism Awareness and Acceptance Month, which happens in April each year, following World Autism Day (2 April), can be an upsetting time for actually Autistic people. The reasons for the discord are many. But just like Hannah Gadsby, I identify as tired. So, I’m going to give you a short list of some practical things to do to direct your well-intentioned support into neuro-affirming action.

Firstly, please know that the Autistic community is as widely diverse in presentations, experiences, likes, dislikes, abilities and disabilities as the non-Autistic community. If you have met one Autistic person, you have met one Autistic person.

  1. Get your information from actually Autistic people. This makes sense, right? If you want to learn about another culture, you would, presumably, gather that information directly from the people of that culture. We are lucky to have some wonderful Autistic-led organisations in this country, including Yellow Ladybugs, Amaze, iCan and Reframing Autism. If you have an Autistic child, go straight to the Autistic-led organisations that advocate and educate. There are many actually Autistic therapists (speech pathologists, psychiatrists, psychologists, OTs etc.) who understand Autism from the inside out. Search for the hashtag #actuallyautistic online to find them. (N.B. that hashtag is intended to be used by actually Autistic people themselves so do confirm this when you choose to follow someone for lived experience.) Assume that the actually Autistic community, the people with lived experience, are the experts in Autism. #nothingaboutuswithoutus
  2. Learn about Autism. You can do this by attending the wonderful conferences run by Yellow Ladybugs and Reframing Autism (see point above), or by buying books written by actually Autistic people. Here is a tiny fraction of just some of the books I recommend.
  3. Go yellow or go rainbow (but please don’t go blue and, please, no jigsaw pieces.)
  4. The best way you can show your support for your Autistic loved one is to educate yourself, learning from the right people (i.e. those with lived experience and/or are actively neuro-affirming).

Books to Buy!

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The Official Unboxing (Kind of) of The Wonderful Thing About Phoenix Rose

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Yellow Ladybugs Conference 2023: Supporting Burnout

I’m so happy to once again be speaking at the Yellow Ladbugs conference this year, alongside the incredible autism advocates Gilly (@neurodivergent_researcher) and Autistic lawyer Annie Crow (@_anniecrowe). We’ll be chatting about Autistic burnout and ways to support our girls.

It’s absolutely packed with lived experience educators, teachers, speech pathologists, lawyers, doctors, psychologists, advocates, artists, allied health and so much more.

I learned so much from last year’s conference and it’s tremendous value at just $50! Parents, teachers, grandparents, allied health and #neurodivergent people of all ages and stages will find something wonderful in here.

Don’t miss it! https://ylbconference2023.vfairs.com

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I’m speaking at the Yellow Ladybugs Conference in June

I am delighted to share that I have been invited to speak as a panelist at the Yellow Ladybugs ADHD and Autistic Minds Conference (7-9 June, 2022).

Yellow Lady Bugs was born of the desire to raise the profile of autistic girls and women, who have long been overlooked, dismissed and unassisted for the past near hundred years. (From the Lady Bugs website: “This includes cis women, transgender, non-binary, and gender diverse individuals, and anyone who was socialised, or identifies as female.”)

I am grateful for the opportunity to join this amazing organisation for this conference and hope I can bring some supportive and encouraging words to attendees.

Get your tickets here.

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I’m Speaking at the National Education Summit in Brisbane

I’m very pleased to announce that I will be presenting the opening session of the ‘Diverse Learners Symposium’ at the National Education Summit in Brisbane, in August this year.

The title of my session is “Reimagining Autism: Myths, Autistic Truth, Cultivating Empathy”.

If you’re heading to the summit, I’d love to see you there. If you’re still to get tickets, you can find them here.

I’m looking forward to engaging with teachers, principals and therapists in ways that help shift the negative bias towards autism and help us to embrace our young autists, encouraging and supporting them to flourish authentically.

I’m also authentically super nervous (speaking is not my comfortable space) but I am proud to be there as a contributor to the growing number of autistic voices in public spaces, working for positive change. I will be sweaty, and shaky, and probably mix up a few words. But I will be there.

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What is the Autism Spectrum?

You may have heard people talk about ‘the spectrum’ or ‘the Autism
spectrum’. You may have heard people say that “oh, everyone’s on the
spectrum somewhere” or “we’re all a little bit autistic”. The first
thing to know is that those last two statements are flat out incorrect.
You are either on the autism spectrum or you aren’t.

The spectrum essentially refers to the fact that every Autistic person
is different, with different strengths and challenges. As the saying
goes, if you’ve met one Autistic person, you’ve met ONE Autistic person.
There is as much diversity in the Autistic community as the neurotypical
community.

The second thing people tend to believe is that the spectrum is linear
and every Autistic person is a dot on the line, either less autistic or
more autistic, or “high functioning” or “low functioning”. These are
difficult terms and ones a lot of the Autism community rejects. In old
school language, I would be called “high functioning Autistic” and until
recently I would have been labelled as having “Aspergers Syndrome”
(which was another term for high functioning). It’s important to note
that the label of Aspergers Syndrome has been removed from official use
and those of us previously thought of as “aspies” are now included in
the spectrum.

The challenge with the term “high functioning” is that it makes it
difficult to get the support you need. High functioning mostly just
means we’re really good at masking our distress, or camouflaging
ourselves to “pass” as neurotypicals. This costs us a lot in terms of
our mental health and energy and high masking individuals are more
likely to experience episodes of Autistic burnout, which I can certainly
attest to.

The challenge with the term “low functioning” is that it is used to deny
agency to the individual, might be confused with an intellectual
impairment, is demeaning and locks the individual into a box that might
be difficult to get out of.

An Autistic’s person’s ability to “function” (whatever that truly means)
can change from day to day, hour to hour, year to year. The truth is,
though, that while I may look “high functioning” I can assure you that I
can be very “low functioning”. If the perfect storm of stressors strike,
I can be confined to bed. In other words, if the spectrum was indeed
linear, I could move up and down it depending on whatever else was
happening in my life at any given time.

Last year, I went through a prolonged Autistic burnout (though I didn’t
know it at the time because I hadn’t yet received my identification) and
I cried every day for eight months and I was convinced I need to quit
writing. Now, post diagnosis, I know so much more about how to help
myself and I am excited as all get out to bring you a new book! That would be
‘movement’ up and down a linear scale but the truth is simply that our
abilities are determined by our capacity at any given time.

In reality, the spectrum is like a pie chart. Every Autistic person has
a ‘spiky’ profile where we’re really good at some things and struggle a
lot with others. Everyone’s pie chart will look different.

Technically, these days Autistic people are given a category based on
the likelihood of how much support they need. These are “needs support”,
“needs more support”, “needs high levels of support”. These are boxed
this way so that the NDIS can decide how much funding they wish to offer
that person.

p.s. I’d love to be able to credit the owner of that image but there’s
no tag on it and I see it everywhere online so it’s been shared so many
times it’s impossible to find.

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