There is so much that bugs me about this week. The biggest is that I can remember being told not to talk about my struggles in case it makes my kids feel bad… so I kept it all to myself and burned out, with huge consequences for the family. I’m not the only one who is told this.

Because we are told to keep things to ourselves, others don’t see our struggles either, especially when we’re juggling work, appointments, housework, and everything else with less than adequate supports. Then people wonder why we end up burned out.

Carers, whether we care for kids with disabilities & chronic illnesses, or our parents, or other loved ones, need more support, practical support.

I know that I could have done with more money so I didn’t have to try to juggle work with caring for my kids & all their appointments. I could have done with a cleaner & someone to cook some meals for me to take that off my shoulders. Someone to talk to, so say ‘yes, this is hard’ instead of constantly telling me to be positive & have ‘self-care’… I needed community care. I was lucky that I did have some support from my family and church, but it wasn’t nearly enough.

One of the biggest things is that I wish I had been able to share my story of how being a single parent & carer to two chronically ill kids with complex needs impacted me… even now, I don’t talk about this much, except in private groups with other parents. There is no doubt we love our kids and will do anything for them, but it’s also very difficult and it takes its toll.

I wish carers got more supports, and we were encouraged to talk about it, rather than hiding it… maybe one day I’ll be able to speak out…

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This morning, I stumbled over a post on Instagram about being Hyperverbal. This isn’t a term I had heard of before, but the more I read, the more I found myself thinking ‘hey, that’s me’. I did my usual thing of doing some research and found that there are others talking about being hyperverbal.

When I was younger, I was often told to stop talking, to consider other people, and think that may not be interested in what I had to say. I would talk over people in my excitement to get the words out. I would talk about my interests… but soon find that others didn’t want to listen.

I would take advantage of sharing time at church to talk about what was going on in my life, only to be told to sit down and let others have a turn. So I would stop talking.

I loved doing talks at school as I was able to share whatever I had learned, but my classmates didn’t seem to want to listen to me. My favourite parts of my journalism course were the radio and TV units where I could talk. I enjoy ringing radio stations to share things. I even chat to those at the supermarket just to talk to people.

If I’m struggling, I often call Lifeline so I can talk things through (I think this is another reason journalling doesn’t work well for me as I find processing big feelings by talking about them is what I need). I really enjoyed when I had a peer support worker as it was someone to talk to and I was encouraged to infodump.

There have been so many times in my life when I’ve been told to be quiet, to not talk, to not share. This could be that others aren’t interested, they want a turn, or their voices are simply louder than mine, so I learned to be quiet and to suppress my words, my voice.

I’ve only just discovered this term and what it means, so I’m trying to work out what to do with this moving forward… it’s nice to know that I’m not so unusual, needing to talk about things, to use my voice, as I thought.

There is a lot of information and discussion about those who are non-verbal and accommodations for them, but not much about those of us who are hyperverbal. I’m not sure what accommodations will help, maybe peer support workers who will let me talk, or something, I don’t know. It’s nice to know I’m not alone.

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Then, as a teen, there is an expectation that you’ll do your school work and get good marks, then do chores around the house, extra-curricular activities, and, when you’re a certain age, get a job.

Then, when you’re an adult, there’s juggling a job, housework, bills, budgets, cooking dinner, and so much more. And to be a ‘successful’ adult, you can do certain things like paying the bills and managing money, keeping your house clean, tidy and organised, cook healthy meals, exercise, and keep working at your job… and that’s before you add kids and childcare into the mix.

A big thing with neurodivergence is struggling with executive functioning, part of that is struggling to manage all the things we are expected to do.

Being neurodivergent isn’t an excuse not to do things, as they do need doing, however it means we may need some additional support to get everything done.

That support could look like getting someone else to do the thing (such as getting a cleaner to do housework), having someone do the thing with you (often called body doubling), or a myriad of other supports that are available. This can include classes or lessons to learn skills that people assume we know at a particular age, but never learned for whatever reason. I know that there are some forms that I struggle to fill out, and having someone talk through them is really helpful and reduces the feeling of overwhelm.

Being told ‘you’re an adult, just do it’, isn’t helpful. There are times when we need some additional support and accommodations to get things done. There are times when we simply can’t just push through to get something done, we need some additional supports.

There is nothing wrong with needing some additional support to get things done. There are very few people who are actually good at doing everything. So if you need some extra help to get things done, reach out and find the supports that are going to help you (and yes, this is something I’m pretty bad at doing).

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I remember being in a Bible study group and someone commented that church shouldn’t be routine… however I can see that that routine helped me and helped my faith grow and stay.

Every Sunday, we would go to church. We would see, mostly, the same people. We were often involved in the service so already knew the songs. The pew sheet always told us what the readings were and the topic of the sermon and kids talk. We knew whether or not there was Sunday School (it wasn’t on in the school holidays, but we knew to expect colouring sheets). The prayer book meant that the services followed a predictable pattern and we knew what the responses were. Even if we went to a different church, they were all pretty much the same.

A standard church service usually involves some songs, prayers, Bible readings, sermons, and some more songs. If there was communion it was usually at the end of the service and followed a standard format. This format was fairly consistent with different denominations, though how communion was handed out was sometimes different.

For most churches, the minister or service leader would tell us what was happening next, so it was familiar, safe.

We were told when to stand or sit or kneel, though I never liked kneeling. Most songs were simple and, even if there was a band, they weren’t loud and ‘full on’. Often it would be a simple piano or organ.

The only churches I really didn’t like were the ‘mega’ churches. These were usually Pentecostal churches and were huge! The singing was high energy and there were lights and other effects. For me, it was sensory overload. I also really struggled as people would wave their hands in worship or prayer and I didn’t know what to do. Was I supposed to behave like that too? I always feel really uncomfortable in those environments. I’ve heard them referred to as churches for extroverts!

Church provided a space that was safe and familiar. Many of the people who have made a difference in my life have come from the various churches I have attended and have been very special to me, even if only for a short while.

Church was also a place to get involved. We would be encouraged to do this from a young age, from being part of the welcoming family at the door, to writing prayers to deliver in the service, to doing Bible readings, playing music in the band, performing during kids talks, and even being the service leader when I was 18. There were so many opportunities to practice my gifts and do the things I enjoyed. This was a space where I was supported to do this in a way that I wasn’t at school. When my kids were growing up, I was disappointed there weren’t the same opportunities for them.

Church was a routine, it was just what we did. I did miss it the years when I didn’t attend, and I’m glad that I’m back, though I am being a lot kinder to myself and allowing me to put my health first, as I used to not do that… Looking back, I realise how important those communities and routines were to this undiagnosed AuDHD girl.

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Author: Emily Katy

Category: Memoir

Publisher: Monoray

Publication date: 28 March 2024

Blurb: ‘Emily’s moving book is a powerful testimony that shines a light on the continued failure of health services to provide any kind of meaningful improvement for autistic people. Should be essential reading for mental health professionals and anyone with autism in their lives’ – FERN BRADY, author of Strong Female Character ‘

This book will bring so many readers self-recognition and comfort.’ – DEVON PRICE, author of Unmasking Autism

To the outside world, Emily looks like a typical girl, with a normal family, living an ordinary life. But inside, Emily does not feel typical, and the older she gets, the more she realises that she is different. As she finally discovers when she is 16, Emily is autistic. Girl Unmasked is the extraordinary story of how she got there – and how she very nearly didn’t.

Still only 21, Emily writes with startling candour about the years leading up to her diagnosis. How books and imagination became her refuge as she sought to escape the increasing anxiety and unbearable stresses of school life; how her OCD almost destroyed her; how a system which did not understand autism let her down; and how she came so close to the edge that she and her family thought she would never survive.

In this simple but powerful memoir, we see how family and friends became her lifeline and how, post-diagnosis, Emily came to understand her authentic self and begin to turn her life around, eventually becoming a mental health nurse with a desire to help others where she herself had once been failed.

Ultimately uplifting, Girl Unmasked is a remarkable insight into what it can be like to be autistic – and shows us that through understanding and embracing difference we can all find ways to thrive.

Review: I have been following the author on X/Twitter and Instagram for a while. When this book came out, I was interested in reading it, however also had a bit of wariness as she was 22 when this book was written, and was diagnosed at 17. I was expecting to find it a bit irrelevant to me, who had been diagnosed at 44…

I was pleasantly surprised to be drawn in, seeing myself in ways that I had rarely seen before. I’m also one of those kids who lives in my imagination, and I hadn’t seen that represented much in books featuring neurodivergent characters, let alone in a memoir.

As her story unfolded, I had to wonder how I managed to get through high school without the issues she had, even though our experiences seemed quite similar. It also goes to show how even the most supportive family won’t stop mental health break downs.

This book weaves facts about autism with her story in a way that is easy to read and engaging. For anyone who is trying to understand autism, especially in females, this memoir is well worth reading.

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When I moved out of home when I went to university at 18, the first thing I did was find a church. That church ended up being the one I went to for a couple of years, and the minister there even came to Melbourne to officiate my wedding.

That was a local Anglican church, and the minister was someone who had known my family for a long time. I was welcomed right away and felt at home. They needed some volunteers to help with the youth program and I put my hand up. When I was struggling for money, I worked as a cleaner for a while (that job didn’t last long as I’m not a very good cleaner!). I was immediately welcomed in to a community.

When I got married, we moved away from that church and joined another one. This wasn’t too close to home, however it was one we were welcomed. This was also an Anglican church and was the one my parents were married in! People from all over the city attended and we made some great friends.

We made the decision to move again, to the other side of the city to be closer to work and family, and ended up attending the church I grew up in, and where we were married. We attended there for a few years before moving further out, this time with small kids.

The church we started attending, it was mostly me and the kids, was also an Anglican church, and was the one my Oma had been to. While there, I was struggling with post-natal depression. The community there really wrapped its arms around me and the kids, supporting us in so many ways, from someone praying with me every week, to welcoming me and the kids to playgroup, to helping clean the house when we failed an inspection (that is a whole other story).

When my marriage broke up and I moved back with my parents, we found a new church. For a while we attended both an Anglican and Presbyterian church on alternate weeks before finding one that we all enjoyed.

This pattern continued until about 7 years ago. We moved outside the city and I couldn’t find a church that suited our needs. The kids didn’t feel comfortable in them, then my younger kid had a pretty large health issue and attending was too hard. Lockdowns in 2020 meant we were able to livestream the church we had been attending back in the city… but even that stopped. It got to the point where I had to choose between attending a church first thing on Sunday, or looking after my health and sleeping. My health won out.

Recently, I moved again, and have started attending church again.

It is an Anglican church, and really small. Best part is that it starts at 11am, so I don’t have to choose between my health/sleep and attending church. It’s also walking distance from my home, so I get to walk there each week.

For me, part of being in a church is the community, and it needs to be one I feel comfortable in. It needs to have good, solid teaching, not moralising, and it needs to have people I can talk to, along with being welcoming. I know that there are some people out there who say you should attend church no matter what, but, for me, if I really don’t feel comfortable there, then I know I won’t attend… this is one reason I don’t like the mega churches, I find them complete sensory overload! More on that later.

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A couple of days ago, I saw a version that used steak, saying it was one price at the supermarket, another at the butcher, another at a diner, and another at a high end restaurant.

I felt this version of the meme didn’t make the point very well for a simple reason. At a diner or a restaurant, the only way to buy a steak is if it’s cooked as part of a meal. I don’t know about you, but I don’t buy raw steak to cook at home from a diner or restaurant.

With the first meme, it made sense to me as the bottle of water doesn’t change. Sometimes it may have a different label or brand, however I have seen the exact same bottle at a variety of places for different prices.

The second one didn’t. I get the vibe, that it’s trying to be like the water bottle one, however, for me, it tells me that to charge more I need to change myself and dress myself up to get the higher price tag.

The discussion I had after the steak meme shows me so clearly that different people interpret things in different ways and that there are many coaches out there who are set in their ways, insisting their interpretation is the only way… and that if you don’t agree, then there is something wrong with you… but I digress.

One big take away I have from these memes is that different people read things in different ways.

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I’ve been mulling over this and here is the reality.

For so many people, rest, especially complete rest is a luxury.

I know that I have been told I need to rest. I need to do nothing for a while, a long while, in order to recover from burn out. But here’s my reality. I can’t.

If I stop working completely, then I won’t have enough money coming in to pay the rent, bills, buy food, and everything else that I need to pay for in order to life. If I don’t work, then I’ll be homeless.

I want to rest, and know that I need to, but I also need to pay the bills. I don’t have a partner or anyone else who can earn money to pay for things. I have provided that role for my kids, giving them the opportunity to rest when they needed it. I paid the bills, cooked their meals, and did everything else so they could rest… but there is no one to do that for me.

The thing that I am discovering is there is next to no support for burn out recovery, especially financial… any social security payments are not enough to cover the basics.

This is not an ableist attitude, this is a realistic one… this is the result of an ableist society.

I would dearly love to rest, to give my body the time it needs to recover from burn out. The reality is that if I do that, I will end up homeless, and that won’t help with burn out at all!

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I find the same as an adult. I get told that, to get the success & results I desire, I just do xyz.

So I do that. I follow all the steps and yes, I do the work. But something is still missing and I simply don’t get chosen. I have no idea what I’m doing wrong.

I got a Facebook memory today that I had submitted a picture book to a publisher… five years ago! To date, I have had no response from them, so I assume they didn’t want it. This has happened with so many of my stories. I follow the steps I’m told to follow. I write the story and edit it, working it over and over again. I invest money in the process so I can have a manuscript that publishers will love. Then I submit it to publishers. I also attend conferences and webinars to learn what needs to be done. Then, I hear nothing…

I have written stories that would fit the brief of what the publishers want, what they put on their websites that they want. And I hear nothing.

However, when I self-publish the stories and others buy them, they love them!

Sometimes I think that I really don’t know what I’m doing wrong. I’ve never been popular or part of the inner circle (and I feel there is one in just about every aspect of life, including publishing), even though I try my hardest and keep doing what I’m told.

Yet, it doesn’t work.

I keep floating through life, with people not seeming to see or notice me, and I don’t know what I’m supposed to have done wrong.

So many people tell me I’ve done nothing wrong, but some days, it doesn’t feel that way…

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So here goes. Let’s start at the beginning.

I grew up in a Christian family. My parents met at church (the story goes that mum hid dad over the head with a hymn book, I’m sure there’s more to the story, but that isn’t my story to tell). Every Sunday, we would go to church, wherever we lived.

As far as I can tell, the first church I attended was St Jude’s in Carlton, Melbourne, but I have no memory of that. Then we moved to Gellibrand, then Buchan, then my parents were missionaries in Nepal for three years before we settled in North Clayton in Melbourne, and started attending Holy Trinity Anglican Church in Oakleigh.

We were never part of a particular denomination. St Jude’s was Anglican, I know we went to a Uniting church when we lived in Buchan, then in Nepal we were part of the local church of missionaries there, which was a mix of different nationalities and backgrounds. Growing up, I was never aligned to a particular church denomination. Instead, my parents encouraged us to look for Biblical teaching, and part of this was encouraging us to read, question, and discuss the Bible and what we were reading.

We would have daily devotions from various family Bible study books and learn the stories of Jesus. There wasn’t a lot of moralising, it was more important to learn the stories and understand them. My dad told me once that they did this in the hope those stories would stay with us so we could use them as we grew and explored life. Those stories were presented in so many different ways – from reading the Bible to listening to them in church, to performing plays based on them, to singing, to other things that I can’t think of right now. The importance was on the story themselves.

Because we weren’t brought up with a lot of moralising, I didn’t understand the idea of ‘purity culture’ and what many other traditions say about the role of women.

I was also brought up in a church that had a vibrant culture of lay people, and we were encouraged to get involved from a young age. This included doing readings, prayers, welcoming people when they arrived, and being part of the music team. As a teen, I would also get preschoolers to help with lighting the candles each week. As I got older, I also taught Sunday School. There were also many women who got up to preach and had leadership roles in the community.

This upbringing had more lessons than simply the messages of faith. They taught me that I was important, that little things mattered, and that gender was no barrier to leadership. I can remember leading a service on my own for the first time when I was 18. That was a really proud moment for me.

This also taught me that faith is more than something you believe, it is something you can get involved in, something that is active and alive. It was also something personal, that it’s not just something my family did, but something for me, something personal. It’s also not something tied to a denomination or particular tradition.

As I grew, I found a personal faith. I was baptised by my own choice when I was 13 and Christianity became a hyperfocus for a while. Even after that hyperfocus died away, my faith remained. Along with faith, the church community was also an invaluable support, but more on that later.

I may have grown up in a faith community, but over time, my faith has become that, my faith. It’s not something that my parents forced on me, I could have chosen to leave once I left home, but I chose not to. My faith and the church community played a big role in my adult life, even as I was struggling through life as an undiagnosed AuDHD person.

There’s part one, keep an eye out for more.

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