My Autistic Wings

By Joely Williams

Discover My Autistic Wings, an empowering and educational partly autobiographical autism resource book.

Diagnosed at 2, Joely is an internationally award-winning autism advocate and motivational speaker, who loves her disability, Autism. 

Be inspired by Joely's journey to Autism Acceptance; Giggle as you

• Language: English
• Publisher: Maple Publishers
• Release date: Apr 20, 2024
• ISBN: 9781835381588

Book preview

My Autistic Wings

My Autistic Wings

Author: Joely Williams

Website: www.MyAutisticWings.co.uk

Copyright © Joely Williams (2024)

The right of Joely Williams to be identified as author of this work has been asserted by the author in accordance with section 77 and 78 of the Copyright, Designs and Patents Act 1988.

First Published in 2024

ISBN 978-1-83538-156-4 (Paperback)

978-1-83538-157-1 (Hardback)

978-1-83538-158-8 (E-Book)

Illustrations by Joely Williams

Book cover design and Book layout by:

White Magic Studios

www.whitemagicstudios.co.uk

Published by:

Maple Publishers

Fairbourne Drive, Atterbury,

Milton Keynes,

MK10 9RG, UK

www.maplepublishers.com

A CIP catalogue record for this title is available from the British Library.

All rights reserved. No part of this book may be reproduced or translated by any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without written permission from the author.

The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

This book is dedicated to the people in my life who have always empowered, supported and taught me life’ s most valuable lessons…

To my beautiful husband, my wonderful mum, my fantastic dad, my loyal brother, and my super sistar…

Thank you all, for always believing in me and being the sunshine, on a grey, rainy day. Thank you all for building up the shattered glass jars of mental health and helping me to realise that the power to thrive was within me, all along. Thank you all for inspiring me and being my biggest fans and my most loyal supporters, I will always appreciate all those sleepless nights and hours a day, helping me learn to appreciate, who I am. Thank you all for understanding me and never giving up on the magic within me. Thank you all for teaching me the joys of loyalty, and self-worth, with laughter filled days, adventure trails, and dancing filled nights. Thank you all for adorning the glittering suit of armour to protect and empower me and thank you all for making me count my blessings every day.

Thank you all, simply for being you, because you all taught me it was okay – and quite magical – for me to be, unapologetically me.

A note from the author:

This book was written with a sensory den, magical fairy dust, a waterfall of tears, absolutely zero Artificial Intelligence, and not nearly enough chocolate. I hope my book empowers you!

CONTENTS

An Introduction to Autistic Magic 9

My Autistic Wings (Hidden Hardships and Quirks) 13

The Journey to Autism Acceptance 18

My favourite Autism traits and ‘Super-Powers’ 18

Communication 26

Executive Dysfunction 40

Processing Information…slowly 49

Justice Seeking 61

Sensory Issues, Burnout, Shutdowns, Meltdowns and Processing

Information. 71

Smile - You’re on Camera! Joely - hide the pain! 93

Interoception and Alexithymia 96

My Autistic Wings Conclusion 109

Hype For My Fairy Jam Jar (ADHD) 111

All my ‘Hypers’ and Hypos in ADHD. 112

ADHD and distracted, shiny conversations! 112

Hypo Auditory and visual-spatial working memory – forgetfulness. 115

Hyper focus vs Hyper fixation. 117

Hypofocus – inability to stay focused. 120

Hyper Impulsivity 121

Hypo Object/Person/Instruction permanence 121

Hypo Emotional Regulation 123

Hypo Time Perception/Hyper Time Blindness 126

Hypoflexibility/Hypo Social Imagination 127

Hyper-Activity and Hyper-Stimulation 128

Super-Power: Super Mind Wandering (Stim)ulations 134

Hype For My Fairy Jam Jar (ADHD) Conclusion 139

Love Potions (Relationships) 140

Perceived Progress 141

Healthy Relationships 142

Charms in Consent 146

Infantilisation 147

Mate Crime 152

The Power Imbalance of Bullying 156

Love Potions Conclusion 160

Glass Jars of Mental Health 163

Post Traumatic Stress Disorder (PTSD) 167

Gaslighting, Unintentional Gaslighting and Fighting for Inner Peace 170

Rejection Sensitivity Dysphoria (RSD) and the Magic of Pearls 178

Imposter Syndrome 187

Finding the Fairy Dust Love-Glue of Passion 193

Glass Jars of Mental Health conclusion 195

Winging it 202

Independence and Life Skill Training 206

Transitional Care in Adulthood 214

Reasonable Adjustments in higher education and workplaces 219

My Autistic Wings - In the Workplace 227

Winging it Conclusion 234

Learning to Fly 238

Autistic Inspired Mindfulness 238

A ‘Growth Mindset’ 242

Life Lessons to Inner Acceptance and Owning your Diversity. 243

Autism Pride, Acceptance and Appreciation: 252

Learning to Fly Conclusion 254

You’re a seed; your journey to grow is not over yet! - (The End… or is it?) 256

An Introduction to Autistic Magic

I may be an Autistic and a disabled fairy, who is often bed bound, who cannot walk or talk some days… but have you seen me fly? I fly when I help others – and I adore it. My name is Joely Williams, I am 30 (2023), and I am an Autistic, multi world and nationally award-winning Autism advocate and motivational speaker. Welcome to the second book in my empowering and educational Autism resource series!

I was privileged to be diagnosed as Autistic and ADHD at 2 years old - and I see my disability as a gift - I’m an honest, empathetic, justice seeking fairy who always tries to be good. I love my Autism; however, my Autistic identity is definitely still a disability in all senses of the word - I am an ambulatory wheelchair user and I have 18/100 average life skills - that’s on a good day. I require 121 care to get anything done - sometimes even basic self-care - that said my disabilities have been a learning journey that has taught me priceless life lessons to understand my Autistic mind.

My favourite of these life lessons:

Invisible wings, are not the same, as not being magical. Not sensing the beauty within you, does not mean, that you are not a beautiful soul, even if you are struggling…

I’m used to being invisible. Dancing among my realm like its only mine to see. I’ll lure you in with sweet talk of magic and hope you don’t see the dark chaos hidden within, even though I tell myself it is okay to be darkened by life. There is so much darkness, after all – I am human. You can learn from darkness though, and darkness does not mean there is no light at all. It’s just hidden, that’s all – a light caused the shadow, sometimes you must find yourself around the dark, to see the light shining on the other side. With time, light will shine through. I believe this simple anecdote within a cellular level, motivating from the depths of my soul. It’s the same for our magic, our inner beauty, so often invisible and hidden.

Yes, I am used to being surrounded by people, and being absolutely hidden. Let me tell you, to be surrounded by people, and feel so utterly alone, is a terrible, tragic thing. It’s a song, a type of symphony, often only blessing neurodivergent or under privileged ears. I often talk to myself a lot, as I hide, because very few care to listen. My song, calling out to be understood, and yet so few can fathom my lyrics. Even with my privileges, I am hidden – yes, so few strangers see me, see us, for who we are; I’m so often clouded by stigma, myth, and stereotype. That’s okay, I can still fly when I’m enabled, so can you, but the reality is that being invisible is -

Ooh… wait, you can see me?

Truly?

Can you hear me, too? my words, whispered aloud, as I wish for change?

You can, can’t you?

Even though, I thought I was writing and hidden from sight, from understanding, my being invisible… I’m hiding in plain sight. Can you really see me, for who I am, and not a stereotype or pre-conceived notion of what I ‘should’ be? I hope so.

On the journey to spreading my wings within the pages of this book, I hope to highlight the common – and not so common – Autism myths, and stereotypes that I hope to smash! There are many Autism myths, too. Like many of my passions growing up, where I researched endlessly, the myths and historical details of ancient civilizations; fairies also became an enchantment in which I adored. There was something about the magical realm of understanding and delight, perilously hidden from the outskirts of darkness, which drew me to it. I felt as if I could relate to the fairies, with their mythological, misunderstood and of course, magical, mindful and nature loving ways. I may be a fairy who is misunderstood, wrongly faulted, criticised, labelled as naughty or mischievous; I may not recognise the light that glows within myself all the time, but know this, I am trying my best – and that’s where most of the hidden magic within me, shines. The same goes for you, whoever you may be. There’s magic within you, waiting to be uncovered – you just need to discover and redefine what magic means for you.

I like to see myself as a ‘fairy’ - hugely misunderstood and judged to be cheeky, mysterious or naughty, when really, I’m clouded by stigma. Truthfully, there’s a hidden magic in me (and within us all) - I just need an empowering, carefully mixed potion to enable me and make my learning environment accessible so I may spread my wings to learn to fly. The reality is while I’m viewed as ‘successful’- with a popular published book, multiple awards and a thriving advocacy career – most days I’m too shutdown and overwhelmed to make basic connections. Is it raining? I can’t always tell – making my life skill level around 11/100 on most average days.

In this way, there’s no doubt I’m Autistic or disabled – and that’s okay, I’m a good person, not in spite of my disability – but often, because of it. Thanks to support and understanding, I learnt to sparkle within my Fairy Jam Jar – spread my wings and learn to fly even though I am disabled – I fly because of my disability not in-spite of it. I try to use my magic to challenge misconceptions, to advocate and empower understanding of the very raw, real hidden disability of my Autism, while uncovering the quirks and gifts too.

Over the years, as I’ve grown from an Autistic child to an Autistic teen, to a thriving advocate and transitioning into adulthood, and have learnt my very own type of ‘mindful magic’ (which, for full disclosure, is not at all real magic – I am not a magical witch! I mean, technically I am not fairy either, but hey ho!) … The magic though, is also found in the contradictions and challenging the misconceptions, of what it means to exist, to live, to breath, to be Autistic, to love, to accept… to have faith in yourself, even when society tries to dictate that you have ‘failed’ to meet their impossible expectations.

The truth is that I never failed. Society failed me.

Sure, I might be ‘failing’, disabled and often bed bound … but have you seen me pursue magic? The magic is found, nestled from the blooms of inspiration within us all.

I am magic when I have faith in the power of good people – and they are magic, too.

I fly when I am kind, considerate, or mindful to others and myself.

I am magic when I am enabled to pursuit my passions.

I fly when I am accepting of my limitations and disability.

I am magical and I learn to fly when I grow from mistakes or when I love those around me.

I am magical and flying high, when I am free to be 100% who I am.

To fly, to pursue magic, often means accepting the love that glitters, often on the surface of pain – and learn to improve from it. I try my best to fly, as I never failed and there was never anything wrong with me. I may be disabled, but one day the world will see the magic within me. Likewise, with time, you may see the beauty within your emotional reflection too, your wings metaphorically dancing to empower you.

It has always been my dream to help my community however I can – so that is why I adore touring the country giving keynote speeches at conferences, schools and businesses. It’s also why I love writing as a part of my advocacy… What would your fairy dust be made of? What makes you fly? I hope with this book you can better understand these answers and what they mean for you.

Now, my wings are outstretched, fluttering with glee - and I know I’ve got so much more to give - I’m learning to fly. With a sprinkle of fairy dust, let us learn to fly, together.

Up, up…And away!

Chapter 1

My Autistic Wings

(Hidden Hardships, depths, and quirks of Autism)

As an Autistic advocate, with an invisible disability I get asked a lot how my Autism impacts me, as I don’t ‘look’ Autistic.

Magic, Spells and Smashing Stereotypes

Story time:

I’m 21. Lights dawn around me, shimmering, bright, playful. Music radiates within my ear drums, and I hum happily to myself, as I jump in the midst of a crowd of 3 thousand people, hands raised to the clouded skies, gazing for a glimpse of my favourite band as they exit the stage. We are all one, right now, as we chant for an encore, damp, hot, sweating, exhilarated and united in our love for music, for peace, for charity, for having a bloomin brilliant time, dancing the night away. Here I am, completely normal, and empowered to feel like my differences don’t matter, as I sway amidst a sea of phone lights, and glow sticks, which are held high into the air. Surrounded by this magical atmosphere and darkness, the light shattered around makes the darkness of people’s heads around me glitter like the star lit sky. Such a beautiful sight, even from down here. There is nothing I love more than dancing at my favourite festival, Glastonbury… Well, apart from Egyptology, Fairies, writing, and my disability Autism

Wait - what? I hear you cry, how can a disabled person who’s Autistic, enjoy such an overloading experience? Yet, it’s true, for me, at least. Every single disabled person is completely diverse, just like every human being. So, this is me, in my element, empowered to be human, and not seen as an alien, at Glastonbury Festival.

One of mine and my mother’s fondest memories of Glastonbury Festival, is the very first time I walked past the famous Pyramid stage. It was a type of magic, being suddenly surrounded by like-minded people – all dressed in multi coloured, Patterned clothing, wings, tiaras, ball gowns, tutus and wellington Boots, adorning their dancing, swaying, fidgeting, energised, and nature loving bodies.

It was at Glastonbury Festival that I realised, that magic – and the power of our mindset to change our perceptions – certainly does exist – it just exists differently to what we believe.

Magic is a feeling; the sparkle within you as you think of a passion or become enchanted by something that fills you with delight. Magic is being loved, and loving, even though it could hurt. Magic is gratitude and appreciation and inner acceptance. Magic is patience and effort to help. Magic is kindness shown or received. Magic is that love glitters, on the surface of pain – and that the seed of truth is that we can still learn and grow – no matter how dark we feel we have fallen. Magic is everywhere; especially, as I’ve recently learnt, if you practise mindfulness and continually attempt to challenge your perceptions, to broaden your horizons and learn more.

Magic is a beautiful thing – afforded to us all. In this way, I see myself as a fairy, which is surrounded by magic; enchantments, potions and spells – I smash many stereotypes of Autism – I also fit them. One thing I know – I would never dream of changing my Fairy Jam Jar, or my Autistic Wings; why remove the very (invisible) magic that makes me, me?

Me, not fitting the stereotypes of Autism in the small window in which you meet me, does not mean I’m any less Autistic -I am Autistic – my functioning varies all over the spectrum (low, middle or high) like a scatter graph, and it changes depending on the hour, environment, gaslighting, shutdowns and much, much more. The truth is, I am very much unashamedly Autistic – and my Autism impacts every second of my life in a multitude of invisible, complex and endearing ways. I thrive because of my Autism, not in spite of it – thanks to Autism acceptance and learning to understand my disability.

I am curious though, when people say I don’t look Autistic, what do they think I should look like? Am I supposed to be totally nonverbal and unable to communicate in a way most people understand? Am I supposed to have no life skills, and require round the clock care? Am I supposed to be totally incapable of any basic self-care or chores? Am I supposed to never make eye contact or walk on tip toes? Am I supposed to never make eye contact, or flap my arms because I am stressed? Am I supposed to always shy away from conversation or people or demands? Am I supposed to carry around a soft toy or wear ear defenders all the time? Am I supposed to miss schoolwork, career days or class and hide away from lessons because I am too overwhelmed to process their existence? Am I supposed to have no understanding of danger? Or am I supposed to talk annoyingly about my obscure specialist subject for hours on end?

What does Autism look like?

In all honesty, these stereotypes of Autism, are actually ALL me, on very different days, and very often all at once. I can’t tie my shoelaces and need 121 care to empower me to do basic life skills or self-care. I used to be nonverbal, and I used to communicate exclusively using hieroglyphs. I still become nonverbal or otherwise unable to communicate or process my thoughts. I still need help crossing the road because I can’t make connections quick enough when cars are coming. I have no sense of danger. I need 121 care and constant organising so that I can organise myself and be capable of basic life skills and self-care. I need a carer to organise myself, time and thoughts and actions on a daily basis or I won’t get anything done- including my career, hobbies, things I love, basic self-care, chores and life skills. I have 16 out of 100 basic life skills on an average day. All in all, that’s pretty low for an adult nearing her thirties.

That’s all me, day to day, yet I don’t ‘look’ Autistic – because people never see my lived reality for that long. They don’t see me bed bound in sensory friendly surroundings for days at a time. They don’t see the nights where I sleep in a cold, empty bathtub because I’m so overwhelmed and exhausted because my skins burning with such a ferocity that no fabric, no matter how soft, can touch me and my bed is unbearably painful. They don’t see me so shutdown that I can’t walk or talk or even think. They don’t see me screaming in meltdown or hitting myself on the head as a self-injurious behaviour, while I desperately try to cope.

However, I do, in fact, showcase all of the visible traits of Autism. These traits can prove my potential Autism within a moment of meeting me – you see, I have a body, a face, a personality. I am filled with dreams, hope, love and care… I look like a human – because there is nothing else our Autism looks like, than being human. Any human being can be Autistic or undiagnosed Autistic. We don’t have blue skin, or our passions tattooed onto our foreheads. We don’t have legs moulded from jelly because we are all clumsy and uncoordinated (I’m actually great at sports – understanding the rules, are a different matter, entirely!). We don’t have soft fluffy brains that are not visible through our lack of eye contact. We don’t have a switch on our noses, which turns off our ‘one setting’ of ‘monologue / obsession / monotone’ for our emotions, interests and vocal cords. We don’t have mouths sewn shut, because we are all nonverbal. We don’t have noise cancelling headphone ears and soft gloves permanently attached to our hands. We are human. So, we look human – in that way – I definitely look Autistic – just like anyone who is undiagnosed could.

So, what is the essence of understanding Autism, to me?

Imagine that inside everyone’s brain is a map. The map in all of our brains is really clever and it can help us get from one thought to another thought and it helps us work out what to say and what to do. This brain map can take people who are not autistic seconds to travel down before they think about, process, understand, do or learn something. Our body will tell us something, that message will go up to our brain, and say, as an example, I need a drink then that thought travels down the map path, to the end point where our brain makes us to drink something. This is easy for non-autistic people and takes seconds because their brains are like a map, and its easy and quick and the thoughts go straight to where they need to do to help the brain function at its best because the map tells you were to go like a car satnav.

The only difference between autistic people, is that our brain map- is more like a brain maze with no satnav. As autistic people, our thoughts, our wants and needs and ability to learn and process information get super lost as it travels around our brain maze. It’s not as easy to get things done, to say what we want to say, to do what we want to do, or process our needs. Autistic people can take seconds, minutes, hours, days, or weeks longer to process that they need to do to get water or food. It can take longer to process that we need to do a chore or are overwhelmed or upset by something or need to do homework or revise, because these thoughts and needs get lost in our brain maze. The same goes for if we want to talk, if we are hurt and need to ask for help, if we want to play, or if we want to learn something. Our thoughts and needs take longer to go through the brain maze and can get easily lost and overwhelmed. None of this is our faults or within our control. This can make us get overwhelmed and shutdown or burnout or meltdown and it is not our faults.

The things we see, hear, feel, learn about and need, get lost and this can make us get super overwhelmed and super slow in making connections. I can hear someone call my name and not make the connection they are talking to me. I can see a homework prompt in my diary, and not process that this means I need to do homework. Seeing, does not automatically equal understanding what needs to be done. Yet, this doesn’t mean I don’t know things or don’t care.

I struggle to communicate and enter my thoughts into conversation, because my thoughts on what I want to say get lost in my brain maze. I struggle with learning, because I process information I want to learn slowly as it travels through my brain maze. I can still learn and learn well when empowered with sensory friendly and pressure free environments where my hyper focus can shine. I struggle with something called executive dysfunction, which means I find it difficult to organise myself and keep up with chores or demands or work, because my good intentions to do things gets lost within my brain maze. I can still be empowered to function and completes to do lists or organise myself. I struggle to be independent and organise myself and have poor cognitive and working memory, which means I find it difficult to go through step-by-step instructions, because each instruction gets lost in my brain maze, so I need a lot of prompts and reminders to do each thing. I can still be enabled to improve my working and cognitive memory. I struggle to make connections – for example, I could feel the rain on my skin and not make the connection it is raining – or how to stay dry – and I struggle with this because my feelings and body sensations also get lost in my brain maze, so that I don’t realise what those sensations mean quickly. With the sensory friendly and fewer unnecessary demands and pressure, I can better make connections. I shutdown every week, where I cannot walk talk or even think to my usual capability. I can still be empowered to escape the shutdown overwhelm cycle that harms me so I can be at my best. I just need fewer demands and less pressure and an understanding environment that actively adjusts and makes my capabilities accessible for met to process. All of these struggles are better detailed later in this chapter, so I hope my insights can help you in more detail!

My Autistic brain is a bit of a maze – but it doesn’t mean my capabilities are lost forever, I just need help for my capabilities to travel through my brain maze quicker. I have a lot of hardships – but that’s okay. They say nothing bad about me, or my good intentions to try. These hardships don’t mean I have no hope, these hardships only mean I need a bit more support than other people, to thrive. Even though our brains are wired differently, we are still human just like everyone else and we still have things we are good at and things we are not so good at, just like everyone else.

The Journey to Autism Acceptance

It took many years to get to the stage I am at now – Autism, disability, and chronic illness acceptance. Although admittedly I have always been relatively accepting of my difference, because I always knew that I tried my best, and if I didn’t succeed then it wasn’t my fault because I did everything I could in a world that didn’t want to support me. This ability to see myself so positively, and what I would learn, my stoic nature, really aided me to accept my Autism, my illnesses and my disability, more or less straight away. It’s like I got my diagnoses, without even knowing Autism or my illnesses existed before, and I just went okay. That’s who I am. Cool I never considered that I wasn’t. I never had any stigma to battle, and I guess that worked in my favour. For me the journey to Autism and disability acceptance, is accepting your quirks, silver linings, and your hardships as a part of you, and not something you’re doing wrong. So, to start off, Ill describe some of the parts of my Autism, that I love, and then I’ll detail some of my biggest hardships – because accepting all of it, is key, to accepting my Autism.

My favourite Autism traits and ‘Super-Powers’

To make a start with enabling a type of Autism acceptance that helps individuals, I’ve made a list of my favourite aspects of my Autism, and what some may call ‘superpowers’… I have made a list, because… well, I just really like lists! To me, my ‘super-powers’ don’t minimise my disability and they do not mean I have no struggles and no support needs; likewise, my disability does not invalidate my superpowers, because disability says nothing bad about my potential, my efforts, my motivation, or my traits. However, it took a long journey to accept what the two definitions mean to me; therefore, I feel comfortable calling these traits of mine, either gifts or ‘Super-Powers’. Just because I use this type of language to describe traits, never means that you must use the same language, too. It’s okay to feel, whatever you feel.

1) Super factual memory

Just think for a moment, when you were a small child, did you ever lay in a green meadow, safely shaded by the trees, sun warming your face, the scent of grass and rustle of leaves sounding in your ears?

Have you been somewhere, like this, and remembered every detail? That even ten years on, would you be able to accurately describe everything you saw? from the scientific names of the flowers, clouds and insects to the numbers of leaves on the floor?

I can!

My superb photographic memory is one aspect of my gift autism, which is unique, positive and empowering.

Good memory is a common trait for some Autistic people (not all); I can use my memory and my ability to soak up facts to my advantage if I’m enabled and well supported and not too shutdown. You want to know the funny part of my good memory? It’s that I don’t always have a good memory – it’s not a choice