Last week, I was honoured to be invited to Government House in Paddington, Brisbane, to attend the Autism Queensland Awards for 2023. I was a finalist in the category of Individual Achievement (18 years and over). The winner of that category was Dr Chris Edwards, who’s been doing some fantastic work with children and the organisation, Aspect. I was proud to receive a Special Commendation, after being nominated for my work on my novel, The Wonderful Thing About Phoenix Rose, and its contribution to opening pathways for more own voices stories to follow. Thank you, AQ, for this recognition and thank you to Her Excellency, The Honourable Dr Jeanette Young AC, and her impeccable staff for such a warm welcome to me and my family.
A lot of people (Autistic, mainly) have messaged me to say that The Wonderful Thing About Phoenix Rosemade 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.
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… 🙂
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
I had a serious auto-immune condition that started when I was 15 but I was misdiagnosed for 25 years.
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.
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.
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.
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…
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.
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.
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.)
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.
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
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.
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).
It is only recently that I have come to fully accept this as a potentially permanent situation and learn to heal the internalised shame of this particularly frustrating dilemma. But to explain how this happened, I’m going to have to go back in time.
I learnt to read early. I was an enthusiastic reader. I had very specific interests in stories, especially anything with horses or animals or fairies and magic. I can decode text. I am not dyslexic. I was a good student and, generally speaking, excelled in almost everything (until senior years when I had exceptional highs and lows and nothing in between (I was never going to be mediocre, only top or bottom… but that is a completely different story).
However, despite being a good reader, I was always baffled at how quickly other (good reading) kids finished books. I distinctly remember thinking at a young age and beyond: I’m a good reader so why can’t I read as much as the other good readers? I was an accurate reader and I had high comprehension but I was not fast. I realise now that I compensated for a lot of this by being the best student. I did all the work. I spent whole days working on one project. The moment I didn’t get a near-perfect mark, I was asking for tutoring. I made copious colour-coded notes and taped them all over the house. I read out and recorded my study notes onto a cassette tape and played it back to myself while I slept. (I’m not even kidding.) In short, I worked and worked and worked (setting up a lifetime pattern of burnout).
As an adult, I’ve always been truly confounded by readers who say, ‘Oh, I loved it and finished it an a day.’
A day?! What?! How?!?
For me, even if I LOVED a book as hard as you could LOVE a book, to finish a novel in TWO WEEKS would be a fast rate for me.
Then I had my son and it all ended. I couldn’t read anymore.
What I didn’t know back then, which I do now, is that I am Autistic and ADHD and knowing what I know now, here is what I think happened. When I had my son (and I got book contracts, and I had to move house and renovate a house and wind-up a charity and lots more), my poor brain’s less-than-optimal executive functioning skills were pushed to levels they’d never been to before. Our brains are very clever, though, and mine worked this out and made the choice for me: my son was the priority. Essentially, my brain shut down a whole lot of other pathways in order to prioritise my child. Reading was cut from the list. I also now know I was in Autistic burnout, which I had been for most of my life since the age of 15 and burnt out brains have no qualms about dropping your hard-won skillsets.
For the past ten years, I have essentially convinced myself that this is a temporary problem. But reading ability has never recovered.
Reading and ADHD
Difficulty with reading is a common ADHD complaint. Every AuDHDer is different but for me, these are some of the ways reading poses challenges for me.
I have ADHD impatience but I also have the strong Autistic need to finish something I started and do it really well (preferably perfectly), but having a slow reading rate means it simply takes me too long to get there and those conflicting drives create stress.
The AuDHD brain craves novelty and keen interest. If the content hasn’t grabbed me by the second chapter, I’m out. I simply CAN NOT go on. (I do want to make it super clear here that often people think ADHDers have a choice in their behaviour… that if they just tried harderor if they just focused more they could get it done… but it doesn’t work that way. That’s a longer conversation for another day, all about transmitters and dopamine.)
Inertia: once I get interrupted, it is difficult (sometimes impossible) to initiate the task again.
My sensory processing difficulties (e.g. noise, smells, temperature, clothing, body position) are such high distractors that I can lose focus and have to start again.
I can’t read off a screen. (I don’t know why exactly but I just can’t.)
If I do get distracted, I need to go back and re-read passages or pages over and over because I need to feel that I have read it deeply and properly (I do not skim read!). This becomes tedious and fatiguing.
Unfriendly font types and lack of white space are a problem. I have been reading about dyslexia-friendly fonts lately and exploring those but I don’t feel I’m knowledgable enough about them to say more about that at this stage.
Having to be still is a big problem for me. Until recently, I had NO IDEA how much I fidget. Something is always twitching. This is challenging for long hours of reading. (I also can’t sit through an entire movie.)
I will finish with a final (but exceptionally important) challenge, and that is that I am a highly visual and sensory reader. If there is trauma on the page, I don’t read that in a theoretical sense with a bit of sympathy… I FEEL it. Literally. In my body. In my organs. And I SEE it in minute detail in my head and it NEVER GOES AWAY. So often, I am traumatised by fiction and simply cannot read on.
Non-fiction books
I have been able to read more non-fiction in paperback form than fiction, which I think is largely due to the amount of white space, bullet points and diagrams that break up long-form text. It’s also easier to put down a non-fiction book (whose content is grouped in chapters and sections) and then pick it up again later because the next chapter doesn’t necessarily depend on having read the previous chapter, whereas reading fiction requires that you keep a lot of story-world and character information in your head in order to link earlier information to later information to make sense of the whole story.You can also often flick through non-fiction books and skip the bits that don’t have high interest, unlike a novel, which requires you to read all of it.
A Hereditary Problem?
We know that ADHD is highly heritable. Interestingly, both my mother and maternal grandmother were also great readers until they hit a point in their life where they said they simply couldn’t read any more. I’m guessing this was about when they hit burnout and their executive functioning took a long walk up a mountain to rest.
So What Do I Do?
Firstly, I read almost exclusively on audio. If it’s not on audio, I can’t read it. (So please, publishers, can we have everything on audio at all times? It’s an issue of equity and access for all.) For example, with tremendous irony, I am waiting to ‘read’ Sally Rippin’s book, Wild Things(which is ALL about kids having difficulty reading, which my son does too) but I can’t read the book and so I am impatiently waiting to get it on audio at the end of this year. Oh, the irony 🙂
Over the years, several people have said to me that ‘audio books are cheating’ or that ‘it doesn’t count as reading if it’s not a book’ or that ‘it’s lazy’. Loves, this hurts.
Some people have very rigid beliefs and ideas. I mean, if a blind person listens to an audio book, would you tell them it was cheating?! No, because (a) what does that even mean?! (b) I doubt you are that rude and thoughtless because it is perfectly okay for someone to access a story in whatever way supports them best; and (c) story is story! It still teaches you empathy, history, culture and mood. (Hello, our Indigenous populations thrived for many thousands of years on oral storytelling.) You can still visualise the story in your head. You still cry and laugh and shudder and gasp. You’re still transported to other worlds, relax and get excited. Your brain is still working; it’s just working differently. (At which point, I’d like to refer everyone in the world to Chloe Hayden’s book, Different, Not Less.) To say it’s cheating or doesn’t count is such an ableist, elitist, privileged, crappy thing to say. Please don’t take away our joy, and don’t shame us for not being able to do what you can do.
Okay… taking a deep breath… and moving on.
Secondly, I HAVE pushed through a handful of paperbacks in the past decade in order to review them or support author friends but it is agony and NOT because their book is agony (their books are great!) but because it is just so difficult for me: it takes so much energy. It makes me feel like there’s something wrong with me, which I guess is how kids with reading difficulties feel too. Big, huge, warm, fuzzy hugs for all the kids struggling with this right now. It gets better, I promise.
Thirdly, in my book club, there are two of us who need books on audio (one of us with ADHD and one of us with vision requirements) so we will only choose books that are available in formats that suit us all. Easy.
Where to From Here?
I am now taking ADHD medication. Will my reading ability (as slow as it was) come back? Only time will tell. And maybe when I finally get hold of Sally Rippin’s book I will know what to do 🙂
I am learning, though, to be kinder to myself. Neurodivergent individuals hear, read and absorb a staggering amount of negativity in their lifetime. We become exceptionally good at taking on this criticism and turning it into our own internal voices.
I have been carrying a big load of shame about being an author who cannot read. I’ve also had to start saying no to requests for cover quotes for books (something I see as a tremendous privilege and honour, and something I know is extremely important to authors) because I simply cannot read the manuscript. (It can take me a week, or more, simply to read my own manuscript during editing phases.)
I am learning that, as much as I might want to, I will never be able to keep up with a lot of stuff that goes on in the publishing world and that I will never be able to contribute as much in terms of reading and reviewing and talking about others’ work as much as I want to because I am atypical. And I’ll never be able to travel as much and speak as much and be as productive business-wise as I truly want to be. Honestly, that makes me pretty teary.
Difficulties with reading and writing (and learning disorders, ADHD and Autism) may contribute to poor self esteem but what I want to do more than anything is be a role model for my son, to help him learn to undo the damage that’s been done to his sense of self through the schooling system (side bar: we are now homeschooling) and know that some of us (actually, quite a lot of us in the world) do things differently because we need to and that’s okay. What’s not okay is that we don’t yet have full supports in place as normal access rather than them being ‘extra’ or ‘special’ supports.
But I am nothing if not a hopeful person who sees a problem and tries her best to change it. So here I am, talking about the stuff I still find hard to talk about because as Glennon Doyle always says, We Can Do Hard Things.
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In #2 of this series, I will look at the ways ADHD has negatively impacted me as an author. In #3, I will look at the ways ADHD has positively impacted me as an author.
*Autistic burnout (Sidebar: I run Autistic & ADHD Retreats on Burnout on the Sunshine Coast, just in case you know anyone who needs a retreat.)
P.S. I’m just going to finish here by encouraging anyone who thinks they have a child with a neurodivergence of any kind to seek early assessments and support as soon as possible. It is much more difficult to rewrite your understanding of yourself and your brain, and learn what supports you need in life, and to avoid myriad damaging flow-on effects and co-occurring conditions when you are in your 40s than it is when you are still in primary school. We need to know why we struggle. We need to learn how to navigate this world.
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.
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.
