Services to help with cost of living

Getting an email saying your electric is going up double after December is not fun, nor is the obscene expense of food and rarely having leftover money for nice, basic things that we all take for granted.

So I’ve come up with a few things I’m willing to do for a small tip so that life is a bit easier.

Beta reading: got a short story? I will read through and send notes and amendments. Fanfiction also accepted.

Three card reading: my oracle cards have helped many and have been hugely accurate in the past.

Drawings/doodles: want some cute art? Send your requests!

Budgeting: struggling yourself? I’m really good at compiling spreadsheets and can help you budget your money and suggest cheaper alternatives.

Tips are whatever you want to give however I would suggest a minimum of £3 for time spent.

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Taking it literally: how online friendships can be harmful for autistic people

I have made some amazing friends who I first met online. I’ve a circle of four good friends who I talk to a lot, Skype and share my life with and these friendships have gone on for years now.

When it comes to Twitter, however, the models of friendship made life very difficult and made it difficult to stay on the platform, and a lot of that was to do with the different perceptions of what friendships are.

I grew up on 90s and 00s movies, where friends would be in each other’s bedrooms sharing their deepest secrets, or on the phone to each other until a parent would complain about a phone bill. I took that constant communication as a sign of friendship and looked for that when I joined Twitter as a teenager.

The moment someone made me feel special (i.e said they liked me or sent my gifts) I’d think we were best friends, but then came the years of fishing through the genuine friends.

See, friendship to me is about learning each others perspectives, and the many months of unanswered DMs and the only attention received being a few liked tweets were definitely not my language of friendship.

Thankfully I began to slowly find my tribe and now have those I can send gifts to, talk to most days, send memes and have memes sent back, talk to about books and just spend time with them even if it’s over the phone. I’ve developed my own catalogue of friendships to avoid the harm that came as a teenager when I was trying to be friends with everyone.

For young autistic people like myself who have a literal view of friendship, the boundaries of Twitter can be seen as outright rejection. You’re subjected to days of constantly checking your phone and being utterly lonely, wondering what is wrong with you, when no one replies. Then when you finally realise others are just busy, you feel needy and wretched to not be able to go about your day without wanting some form of connection.

I’ve left many groups over the years due to the harm it’s done trying to get people to like me, but the moral of this is that you need to start searching for those who compliment you rather than drain you, and trying to be seen amongst the crowd or be that special friend to someone who already has a full circle is draining.

Here’s how I now manage the relationships of social media:

Genuine friends: speak most weeks, have more than one form of contact, know each others love language, know most things about each others loves, have met in person, are accepting of kind acts from each other and don’t reject them, know your favourite things, check in regularly, can go to them if you’re having a bad day.

People you like: you like their content and think they’re cool people, you might DM a few times but they have their own circle of friends and you’re just friendly to each other. They’ve never offered to Skype or speak to you in person.

People you know: those you follow but who don’t match your idea of friendship. Again niceties are followed but you’re not in each other’s circle.

The biggest eye opener for me was when a gunman threatened to blow up the site my parents lived on, and I was there at the time. When I tweeted about it, the only responses were from my four best friends and one person in passing asking if I was ok. Everyone else was silent, which really hurt, and it was then I realised my life is only special to a small few, and I needed to know who my tribe was so that this sort of hurt doesn’t happen again.

What affected me most was me believing I had more genuine friends than I actually did. It led to a lot of disappointment, and it’s no one’s fault but that’s how it goes when the word friend is thrown about too liberally -as an autistic person you take that meaning literally and then wonder why no one is getting back to you or why you can’t confide in anyone about your day. People have different ideas about what a friend is and so it’s very important you find friends who match your ideals.

What it really means to be an autistic adult

As a child, I didn’t really feel like a burden because I was lucky enough to have people working with me to help me get over obstacles. I had a lovely OT and speech therapist, supportive doctors and parents who didn’t see my disability as a negative.

This all changed massively when I went out to work at sixteen and I realised I had been living in a safe but naive bubble where everyone in it had understood me as an autistic person. Now I was out in the big world where most people’s experiences of autism where Rainman or Sheldon Cooper.

As a teenager I didn’t yet realise I had to advocate for myself, or that there would be grown adults who didn’t know how to understand me, and so I got into a lot of trouble. I was too loud, talked about things that were too inappropriate for the workplace, didn’t work fast enough, moved around too much and was just generally a hard person to work with. It was at this age that I began to learn how to mask, desperate to fit in and not be a burden on anyone.

I hated the feeling of being disliked, having been bullied throughout my childhood, and I so desperately wanted to have friends.

This kicked off a cycle where I’d work in a place for a year and then have to quit because of burnout. I wasn’t aware what was happening to me and just blamed depression, but now I realise that masking was taking up all my energy and in not being myself, I would end up crashing.

It wasn’t safe to remove the mask, however. If I ever talked about being autistic, there would be so many uneducated comments and I simply didn’t have the energy to educate everyone.

“But you don’t look autistic, you must be very high functioning.”

“I suppose we’re all a little bit autistic though.”

“You cope very well, I wouldn’t have guessed!”

If I’d have had just one educated person in my corner, they may have spotted that I was masking my autism so that I wasn’t excluded, causing myself burnout. They may have spoke up for me and got me the right accommodations and freed me from this seemingly endless cycle, but such a person didn’t exist. I had to do this on my own.

In my late twenties I began being more active in the autistic community on Twitter and learned so much about myself as an autistic person, including the affects of burnout and how to advocate for myself. I was causing myself a huge amount of damage by trying to be neurotypical, and yet I didn’t feel safe enough to show the world who I was. In a fit of bravery I did try asking for accommodations so that I could heal from burnout and regain my agency, but this was denied and my colleagues didn’t understand why I needed this sort of help. Another side effect of masking is that neurotypicals believe what they see, and they saw me as a capable neurotypical even though I was drowning.

My breaking point, when I knew I needed to change my path in life, came after a really bad experience at a new workplace. I was extremely burned out and struggling with depression and I couldn’t even find to energy to mask. My executive dysfunction reared it’s head and I began struggling to communicate verbally and understanding social cues. Though that is a daily struggle for me anyway, it became much worse and triggered my anxiety. Unfortunately it meant that I was seen as a depressive person who was causing drama and was told I was creating an “atmosphere” and that my moods were erratic. I could barely process my own emotions and understand what was happening to me, but once again I was the problem. AKA I needed to get my act together and behave like a well functioning neurotypical again.

The irony is that everyone knew I was autistic, but they just don’t realise what that actually means and how it differs between each person. There are no high or low functioning autistics, we just have different skills and struggles which can change depending on fatigue, mental health and wellbeing. It was laughable that I as an autistic person, who struggled with facial expressions, tone of voice and regulating my emotions was being called out for having the wrong facial expressions and moods.

“We just don’t know what mood you’ll be in daily.”

“We’re having such a problem with you.”

“It’s like you want everyone to know you’re in a mood.”

I wasn’t at all surprised to know I wasn’t the only one going through this. In the week I quit my job, I found an article published by Unwritten about a scientist who had been let go from the team because she wasn’t displaying the right facial expressions or tone of voice. Microsoft also published a story of a man who had to put a sign on his office door, explaining that his facial expressions and the way he said things didn’t carry any negative or malicious intent -it was just him being autistic.

I’m pleased to say I managed to find a workplace who not only understood autism and other disabilities, but who also listened and was willing to learn more. I was given a risk assessment, stim toys and movement breaks and space to talk about how I was feeling. Colleagues would check in on me, but would also give me space to just be me instead of calling me out for whatever look was on my face. Instead of small talk and banter, I was given the space to infodump and share my interests, as well as partake in parallel play and a more gentler way of socialising. I am incredibly lucky to now be supported, however it doesn’t change the fact that there are still so many autistic adults struggling in the workplace because of misinformation and stigma.

I believe the problem lies with the image the public have of autism. In the media, we show autistic people as nuisances who cause problems for everyone, or loud, chaotic children who make their parents suffer. Negative connotations such as “struggles, problems, suffering” are always linked to autism by medical professionals and the media, despite an active autistic community advocating to be rid of these stereotypes. When people talk about autism, they give the stage to parents of autistic children or neurotypicals studying autism, instead of autistic people themselves which silences us.

If adults held themselves accountable and began learning about autism properly from those who were actually autistic, life would get better and we wouldn’t face so much discrimination. It isn’t a lot of effort to follow autistic advocates, writers and bloggers and read up on their work, or have autistic speakers come into the workplace to do training and help make the workplace more accessible.

Autistic people shouldn’t have to spend a lifetime masking or trying to speak out, just to be met with ignorance, and they definitely shouldn’t be punished for struggling or presenting differently to neurotypicals. However this world still remains ignorant to the treatment of autistic people, as many neurotypicals simply do not care enough to educate themselves and truly see other people.

I see it every April, during Autistic Acceptance Month, when neurotypicals will post one tweet saying “listen to autistic people” but will then do nothing to support the work we do or lessen the burden. The media will give platforms to parents of autistic children, painting them as inspirational and brave and ignoring the child’s voice entirely, and after April the world will go back to its usual abelist self.

Clearly, we have work to do.

Send me a smile

I have dreams, but…

I put my name down for a week long university course, as I never got the chance to go to university. When I go, I’ll be using a walking stick and won’t be able to stay out like I used to.

I’ll have to use a spoon and select foods I can eat by hand, or that I don’t have to cut, as it’s getting harder to hold a knife and fork.

My first experience of uni will be turning down invites to go for drinks, as I’m getting more tired and couldn’t handle the extra socialising.

I want to be able to fly to Denmark and see the sights, but I need money to handle my increasing pain. I need physio and massages to ease the tension so that I can move more freely. Holidays just aren’t an option.

I signed up for tap dance and had to quit after four tries. My legs aren’t strong enough to learn anymore, and the falls hurt my heart more than they hurt my body.

I contemplated seeing a show, but it’s a night time event and I know I’ll struggle to stay up. The energy used to keep my body sitting up straight those extra hours will mean I won’t be able to do anything the next day. It’s a hard choice to make.

I want to ride my bike in the park, but since there’s no outside storage or safe place to leave it, I keep it in my flat. Only I’m not strong enough to lift it down the stairs. I haven’t gone to the park to ride my bike in two years.

I have dreams, but I also have a body that is slowly failing, and sometimes I hate it for doing so. I know there are ways to achieve dreams even whilst disabled, however the extra energy and obstacles are tiring and often hard, and it’s often easier to just not follow your dreams at al

The battle against injustice has fostered intolerance and impatience

The left Vs the right, it feels like a battle that’s been going on since the dawn of time. Before social media people just voted how they voted, complained about the government (regularly, if you were British) and went on marches.

Add social media into the mix, and you have a full on battle ground, but the lines of each side are now blurred and everyone is up for a fight.

If you have an opinion about something, you’re not going to get an educated response of “respectfully, I disagree and here is why…” Instead you need to be prepared for being put in your place, being called names, told you’re a terrible person and these comments are from those who are on the same side as you.

It is now no longer liberals/democrats fighting conservative/republicans. It’s just groups fighting groups desperate to be righteous instead of facing and fighting the real problems in the world.

Kindness charity workers will block you if you call out their bad behaviour outside of their work. Advocates will call you abelist if you feel language shouldn’t be as heavily restricted as they want it to be. New age mother’s call you whingy and depressive because you lament about the old ways of doing things.

Instead of bringing people together, social media allows people to be as frustrated and pedantic as they want, unable to take part in respectful conversations because they just want to be right, and only their way is right. Meanwhile the people of the world who do actual evil continue damaging the planet.

I feel like our generation is so focused on being woke and being an advocate that offense has to be taken over everything. Every conversation has to be a battle and you absolutely have to have the same opinion. And if you’re not like them? Then you’re out.

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Price hikes mean choosing between being hungry or being in pain when you’redisabled

Finally posting my cost of living article which ironically, never got paid for and in the end had to be rejected over struggles communicating with the publisher.

I’m posting this freely but if you’d like to help me recover what I should have been paid, my tip button will be below as usual.

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Immediately after Christmas I received three letters. My water bill was increasing, the new tarrifs were due to start for electric and I'd been charged an extra £30 for internet over a company error and it wouldn't be rectified till the month after.

This had come just as my rent and food prices started soaring. I had already cancelled my book box subscription, gym membership and swapped my old phone for a cheap handset, what would have to be cancelled next? Home comforts we're now a thing of the past and when you're a disabled person who spends the majority of your time at home anyway, it gets lonely and depressing without anything to cheer you up.

This year the heating has been kept off and hot baths are down to one a month. I wash in cold water, try not to do laundry too much and am just grateful I can cook my food in the work microwave instead of at home. I daren't leave lights on and instead rely on a small battery lamp to carry around when I need to use the bathroom like some regency era character.

I do consider myself lucky as despite the cut backs I still meet my bills and rent, but it has meant that so much is now considered a luxury, even things like tea, coffee and chocolate, and I stress every time I have my period because the amount of pads I need get quite costly.

In March I started needing treatment for my back and because the NHS wouldn't give me the treatment needed, I had to go private. I ended up having to set up a Just Giving page to get the help and once I'd used up what was given to me, I had to end the treatment. I've been advised to get all sorts of treatment to help my cerebral palsy, such as acupuncture, reflexology and start swimming to strengthen my muscles, but these all come at a cost that I can't afford because it is a choice of being hungry or being in pain.

I do worry what next winter will bring. I have so many blankets prepared but last year I was having to go to bed in my dressing gown and coat, and I absolutely dread doing that again. I live in an old one room flat which has very little insulation and it gets very cold even in Spring. The last thing I want to do is keep asking for help, but since the government keep putting prices up and I'm trying to manage my pain and pay for medication, it is really hard to do it all alone.

I’m having to rely on my mum to send frozen leftovers just so I don’t have to struggle to the shops or spend more than I have. So far it is working and helping, but there are days when I’m still eating one meal a day just to make everything stretch the whole month. If I have a month where I’m in extreme pain I’ll take the money from my food budget to see the osteopath or reflexologist, but then always feel like a fool after because I’m left with empty cupboards and an empty bank account.

When I talk about this to other people, I get a lot of responses such as “at least you have a job and have a roof over your head!” And I do get it, I am really grateful that I am better off than some, but the people who usually say this to me get to go out with their friends every weekend and buy lunches out. They get to book holidays and have relaxing breaks, or make impulse purchases, whilst I’m sewing new buttons onto my three year old coat and gluing my boots when the soles start falling off.

There are definitely more costs when you’re disabled, especially when you need treatment or supplies there and then. I’m also autistic and had a few months where I couldn’t afford stim toys, so ended up picking the skin off my face and hands and was covered in scratches. Those who are abled and live comfortably will see these supplies as a luxury, but to me they are a necessity to stop the harmful stims. Thankfully I was eventually able to get stim toys and that has improved my quality of life a great deal.

My one wish as well as for the government to stop raising prices, is for people to understand that you don’t have to be homeless or without a job to struggle. When you’re disabled you can work all hours and still struggle to meet your own needs. We often have to choose between meeting bills and managing pain, and paying the bills will always win.

*Since writing this in April, my circumstances are a bit better. Though the cost of living still impacts me, I’m in a better place than I was at the start of the year.

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Account deleted

The most important thing Alice had to learn was that not everyone was going to be her friend and love her, and that was something that broke her heart.

She treated social media friendships like the greatest friendships in the world -something to cherish and hold on to -however she was just an account to everyone else. A few likes and retweets was the extent of a Twitter friendship.

Social media was the cause of so much depression and so Alice would take extended breaks, though she always came back because she longed for affection and to do kind things for others. She did this even though it would hurt all over again.

After a while, less people cared that she came back. Whether it’s because they were tired of her hitting rock bottom all the time or they expected her to leave again, no one can say, but in time it became apparent that very few had time for her and she was often ignored. It didn’t matter how much she did, only her flaws were seen. DMs went unanswered, important posts were never retweeted, and her internet presence was a ghostly pest. How her heart ached for it to be different.

Alice only ever wanted connection, but few spoke her language. Her way of love and affection was to offer gifts, but these were often rejected on the guise of good intentions. What people didn’t know was that Alice was hardly ever in a position to offer gifts, but when she was she made sure she was covered and then went about showering those she loved with small tokens. For these actions to be rejected was the destruction of her love, no matter the intention. To her it meant she wasn’t close enough to anyone to have this connection, where she could show love in her way and have it appreciated.

Eventually her real friend, one she’d not spoken to because she’d been concentrating on unanswered messages and no notifications, came to her aid. Grey loved Alice in all her flawed glory, loved the way her eyes lit up when she would offer Grey a bag of sweets and how she’d ramble on about NASA’s new discovery. Alice was a rainbow trying to survive in the storm and Grey knew she was drowning.

Grey took her for coffee and gave Alice a list. On that list was 100 good moments of their friendship, including the bad days where the special moments had been the two of them there for each other. Grey then took her phone, and opened the app.

“You can continue to try and get connection from those who are too far to reach, or you can embrace the real moments from the few who are there for you. Whatever you chose, just make sure it doesn’t hurt you. That’s all I ask as your friend.”

Alice looked into Grey’s amber eyes, too emotional to speak but she felt strong. She needed to stop waiting for more from those who were practically strangers and instead cherish each moment she had with those who truly loved her.

She reached over, and pressed delete.

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Wayward by Hannah Mathewson

Thank you to titan for my copy of Wayward, it was unlike any fantasy book I’ve read before.

What I love about the creation is how Mathewson has managed to weave horror into a fantasy so delicately, without it being too obviously petrifying. It’s enough to make the reader shudder and the thought of a creepy, enchanted doll that is attacking people is enough to make everyone check under their bed at night.

Fear of creepy dolls aside, the dystopian, magical London is brilliantly built and there were notes of The Golden Compass in it’s creation, but much darker and diverse. The details of the factions in the city built up the world without having to go into too much detail, and the different communities were explained precisely and Mathew’s skill at explaining things without taking up half the book and losing the plot in the process is top quality.

The main character’s themselves are well written but flawed enough for the reader to have favourites. I found Cassia a bit of a disaster, where I was wincing at all of her decisions, though I did feel for her because she was being used as a pawn by a lot of people. Ollivan himself wasn’t careful and could be obnoxious, but he was very clever and makes himself very likeable to the right people.

I like how each character is neither a protagonist or antagonist (apart from Fisk, who is definitely the true villain in all this, and Jasper who is just a spiteful ass). All of them do bad things and make mistakes, and all of them put themselves in danger at the worst times. It makes for a thrilling read and keeps the reader at the edge of their seat whilst hoping the creepy doll doesn’t make an appearance any time soon.

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The Reluctant Vampire Queen by Jo Simmons

It’s my stop on the tour today for the review of The Reluctant Vampire Queen. Thank you to all involved for gifting me a copy!

The book is about teenager Mo who is doing well at school and plans to achieve big things, but then a Vampire arrives and tells her she is the chosen one, which throws a spanner in the works. After deciding to do both her human life and pretend to be the Vampire Queen, Mo struggles to keep ahold of her old life and everything she loves is put at risk.

There’s a really good message about friendship and honesty in this book and I love how it was written in without taking away from the plot. The content itself was quite humourous what with Bogdan reminding me of Sergei the Meerkat, but as well as the fun and fantastical side there’s an honest portrayal of being a teenage girl and having the pressure of school, friendships and crushes.

I really like how the vampires in this book aren’t used as a love interest or are seen as magnificent creatures who are above humans. Mo’s reaction to them is both funny and refreshing, as they become these ridiculous and outlandish beings in her eyes. I think this is quite accurate in how a young girl would see this world and lends some strength to the character of Mo.

This book is brilliant for kids who love a bit of drama and vampires and will also send them a strong message about being honest with friends and not leaving them behind. It’s a creative and strong novel with a light hearted tone that makes it an easy read.

Rating: 💜💜💜

Could the Changeling theory be real?

“This might sound weird, but sometimes I look at you and wouldn’t be surprised if you told me you were from another planet.”

This was a compliment (I see it as such) I got from someone I worked with a long time ago, and I love that that’s how she saw me. Quirky, fairytale-ish, otherworldly are all adjectives I’ve received and this history of being so different to others that I’m seen as not of this planet got me obsessed with the Changeling theory.

I came across a Tumblr post which explained how society demonised autistic children by calling them Changeling’s, and that was how the “swapped at birth” theory grew. If your child was different to others, the town would say they’d been swapped by the fairy realm.

These stories are steeped in ableism and stigma, but there’s an innocent part to them that creates a far more brilliant story.

I’ve always been drawn to the spirit world and believed in fairies and other magical creatures from a young age. When I was two, I told my mum that in a past life I’d been buried in the forest surrounded by the animals (druid life maybe?) What’s more is that the circumstances of my birth are a little miraculous: I was born two months early, had had a stroke, my lungs were scarred and doctors were convinced I wouldn’t last the night. Somehow though, I survived and b gan pulling my tubes out every time the doctors tried to put them in.

Could there be some other force at work here? Everyone expected me to die, and looking at how weak I was, I technically should have. Then when I was five, unsurprisingly I was diagnosed as autistic.

As an adult I’ve been able to see other people’s intentions through their energy, have read oracle cards accurately and always guessed when someone needed a boost. This intuition has served me well, however sometimes it feels like it doesn’t come from me, but from a spiritual place I’m somehow tapping into.

There are also theories of overlaps with parallel worlds, moving through the veil to glimpse realities and reincarnations from others planets. As neurodivergent people constantly say they don’t feel like they’re from this planet, could it be that the reason we have a different neurotype is that a part of our soul/spirit is from somewhere else? And that’s why basic neurotypical humans can’t understand our reality?

This is just my fantastic and whimsical brain at work, so please ignore these ramblings as the work of someone who looks for magic where she can, but some things do make me thing there are more secrets in the universe and we may never learn them.

From your resident fairy, Luce x

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