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Jo, Take Off Your Pants

The other day Rachel Bailey looked at me and said, ‘Jo, take off your pants.’

And to be honest, I was having the kind of week where I barely batted an eyelid at that.

This post is AN ALMIGHTY CELEBRATION OF My WRITING COMMUNITY (the importance of which is the very FIRST THING I teach all my writing students in all my classes.) You see, Rachel is not only a wildly clever, witty and talented writer, but the woman I refer to as “the godmother of writers on the Sunshine Coast”, and one of the best human beings you will find on the planet… which brings me to the marshmallows.

May be an image of dessert and tofu

You see, I had just rocked up to Rachel’s house (with very little notice) in a bit of a ‘state’. And as I emerged from the car—thirsty, hungry, incoherently exhausted, and carrying a bag of cat litter half my size, I discovered that I also had a marshmallow smeared and stuck to my bum. How? Why?!?! No idea. But stuck it was, clinging to my jeans (and the car seat) like a cranky old barnacle.

Rachel calmly ushered me inside and said, ‘Jo, take off your pants and give them to me.’ She then fetched me some lovely soft corduroy pants to cover my blindly white legs while I greeted my feline fur babies (Rachel’s their ‘bonus mum’) and plied me with tea, fed me biscuits and let me pick her PhD-laden brains about writing techniques, all while she took to my marshmallow-ed pants with the enthusiasm and tenacity of an 18th-century washer woman who would not be defeated.

The majority of the people in my life today are here via books/writing and it’s a precious, beautiful, expansive gift. And, you, Rachel Bailey, mean so much to SO many humans and animals, and I am so glad (and LUCKY) that you found me floating around on the Sunshine Coast as a fledgling author so many years ago and brought me into your nest, and continue to, even when I arrive dragging in my sticky, marshmallow-ed arse (and then repay you by accidentally stealing your phone and taking 3 hours to work out that the photo of Bobby dog is not on my screen due to photo rotations but because it’s not MY phone at all!) Here’s to you, you enormous, shiny ball of light!

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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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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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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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How To: The Pathways to an Adult ADHD Diagnosis

I often get asked how to get an ADHD diagnosis in Australia so I put some info together here that might be helpful. Firstly, this is serious stuff. It needs attention. And you deserve help. You do not need to struggle every day, wondering how you can be so well educated and capable in some ways, and yet able to roll over in bed, pulling up the blankets, only to lose your grip and punch yourself in the face, making your lip bleed. Yes, I’m just that talented. (Just wait till you get to the bit about my car.)

Honestly, after my identification as Autistic I really didn’t think I could be taken by surprise again but then along came an ADHD diagnosis. Never in a million years would I have thought I was ADHD because, just like with Autism, we’ve all been fed a narrow stereotype of what ADHD looks look. You know, the kid (a boy) in the classroom that can’t sit still, can’t stop talking, causes trouble, gets suspended etc. But as one of my diagnosticians said to me, if you think of the cast of Winnie the Pooh, everyone can recognise Tigger as the ADHD one, yet it’s more helpful if you realise that EVERY character in Winnie the Pooh is ADHD… yes, even Eeyore.

The medical community is playing a massive game of catch up right now. For nearly a century, the narrow view of what ADHD looks like has left behind girls and women, people of colour and gender diverse individuals. This is why we are now seeing a sharp rise in ADHD (and Autism) diagnoses: there is a huge backlog of work to get through. As an aside, there is a HUGE overlap between Autism and ADHD. You might like to check out the rather fabulous Megan Neff’s posts on Instagram. She shares a ton of info that you will likely find helpful if you’re querying your neurodivergence.

I shared a post a while back on SOME of the ways ADHD was playing out in my life, without me or anyone else realising it (until my husband started saying, ‘I think you’re ADHD’, and I was like… What? No, I’m not! You are! LOL. That’s funny because he is ADHD. He got his diagnosis first and after many months of getting treatment and learning about it he was able to recognise it in me. (And I am SO grateful.) But as is so common, he presents in a very classic (i.e. stereotypical) ADHD way: he talks fast and all the time, he has energy to burn, he loses his keys almost every day, he cannot sit still… etc. As for me, I wasn’t so obvious. However, after my hubby started telling me that fatigue could well be my signature feature of ADHD, I sat up and listened. Fatigue?! Isn’t that the opposite of what ADHD looks like? And there’s the problem. The stereotypes of Tigger have left everyone else behind, especially those of us who might look like more like Eeyore.

ADHD can look very different on different people. The way it looks on me is very different to my husband and could be very different on you too. It’s tricky!

Okay, so you’re thinking you might be ADHD. What do you do? Here are some things to know.

  1. You’re going to need to get a referral from your GP to a psychiatrist. Psychiatrists are the only ones authorised to issue ADHD medication to adults in the first instance. (NB: this might differ from state so check out your state’s regulations.) After a certain amount of time, they can hand over to your GP but there is loads of red tape and paperwork. ADHD medications are S8 medications: highly, highly restricted, monitored and controlled. (No one wants to see them on the black market.) You’ll also have to do a drug screen and other preliminary health screens.
  2. You might prefer to get a referral to an ADHD diagnostic psychologist. There are pros and cons to this. I went straight to a psychiatrist but I think if you went with a psychologist they would be able to spend a lot more time with you talking it through and coaching you on how to understand ADHD and manage it. I think my psychiatrist is wonderful but they definitely don’t have as much time as psychologists do. You might also choose this path first if you are unable or unwilling to take medication. But if you do want the medication, your psychologist will likely have to hand you over to a psychiatrist anyway.
  3. There are long waitlists for ADHD psychiatrists (I was on a waitlist for about seven months and I’ve heard reports of up to two years) and the assessments are expensive. You can ask to go through the public system but the wait times will vary and of course you will need to have access to the hospital (which is pretty tricky if you live in remote areas). Sadly, many people who want and need a diagnosis are unable to get it and the resultant medication and help they need because they cannot afford the fees or don’t have access to the specialists.
  4. You won’t just see the psychiatrist once or twice. They are the specialists in brain medication and they are going to want to monitor you for a long time to make sure you’re on the right type and dose. (That’s a good thing.) My husband had a pretty straight forward experience with medication (he tried it, it worked, happy days) but my journey has been more turbulent. When my meds are in balance, I simply cannot believe I’ve managed to live this long without them, and I can’t believe this is what other (non-ADHD) people feel like all the time. (Lucky ducks!) But I am still working through it all to find the perfect combination of treatment. Sometimes, that can be rough. For some people, it just takes longer to get the right balance.

My Tips for an ADHD Diagnosis Pathway

  • Because those of us who don’t look ‘typically ADHD’ probably don’t know what ADHD looks like outside of the stereotypical, we might not know how to respond during assessments. (I did ZERO prior reading or research and turned up completely ‘cold’. I don’t think that’s a good strategy.) Prior to my diagnosis, if you had asked me ‘Are you impulsive?’ I would have said no because in my head impulsivity looked like shoplifting, or eating a whole cheesecake (okay, there might have been shades of that in there), or the boys who fling things around in the classroom, or who jump off a bridge into the river below without first checking for hazards. But then my diagnostician asked me if I’d ever impulsively gotten a tattoo … and I burst out laughing. Also, there is a long history of starting jobs, quitting jobs, starting businesses, dropping businesses, burning bridges … and literally every animal in our home was an impulse decision on the spot with no prior thought.
  • Another example of this misalignment between the ADHD assessment questions and my lived experience was about hyperactivity. Did I relate to hyperactivity? I would have said no. But then, I didn’t realise that hyperactivity doesn’t always look like that kid in the classroom who can’t sit still or be quiet. Hyperactivity can be internalised. That can mean: the mind that won’t stop racing, the endless rumination and rehashing of conversations past, the constant second guessing, the lifelong teeth grinding, the fact that I can’t sit through a whole movie, or that there is always some part of me that is twitching, or the lifelong insomnia. (Please, GPs… I have asked for help for lifelong sleep disorders more times than I can count (sleep disorders since a kid in primary school) and no one ever thought to think, hm… maybe this is something else… rather than telling me to try some chamomile tea, do some progressive muscle relaxation and hand me some medication). Anyway… if you are struggling with the assessment questions, I encourage you to ask for help to understand.
  • A really important tip! I am paraphrasing Glennon Doyle here (because I can’t find the exact quote online). She gives this very sage advice: When you make an appointment with your psychiatrist it’s usually because you know you need help. So you make the appointment and then you have to wait. And during that time you feel better again, so when you get to the appointment and they ask you how you are, you say, all good, thanks! What we need to do it WRITE DOWN how we feel and TAKE THE NOTES to the appointment. In the two weeks prior to my ADHD assessment, I simply wrote down everything I was struggling with. As in, specifically that things that caused me woe each day. (Like, I got out of the car one day, on a hill, and FORGOT to put the car in Park and didn’t put the brake on… and so the car rolled backwards down the hill and nearly over the edge of the mountain, and was only saved by one brave gumtree that stopped it. I’m not even kidding. (Like, HOW can you drive a car for almost 30 years and forget to do this?!?! Um, ADHD, as it turns out.) I had no idea if what I wrote down had anything to do with ADHD but I thought, hey, I’m seeing a psychiatrist, at the very least it would be great to chat about this and see what else it could be. I am so glad I wrote it all down. I saw two assessors and as soon as I started reading out some of the things on my list, the first one was nodding with understanding and could explain exactly why that was happening (as in, literally what was happening in my brain) and IT WAS ADHD. So, Glennon Doyle, if you ever stumble on this post, THANK YOU. I would never had remembered what had been a struggle for me without your advice. (Also, I love you and your books. Please keep writing forever.)
  • Lastly, if you go and see your GP and ask about ADHD and they dismiss you on the spot because you ‘don’t seem ADHD’ or because ‘you have a job and a family’ or ‘you managed to get here on time with clean clothes’, please get up, walk out that door and FIND ANOTHER doctor. Okay? Far too many doctors dismiss people on the spot for arbitrary reasons. Talking to you for 10 minutes IS NOT AN ASSESSMENT. That is an opinion and possibly an ill-informed, outdated one. (Please note, I have some fabulous GPs. There are good ones out there.)

Okay, I hope this post has been helpful. For me, my advice is that if you think you might be ADHD, do not ignore that. (Did you read the bit about my car?!) It could save your life. I know it’s a long process: it’s worth it. I know it’s expensive (but so are panel beaters).

Jo x

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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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