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.)
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.
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.
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.
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.
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).
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.
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.
