Emilia's Colours, The Gift of Autism

By Ali Beasley

Living with autism challenges you to parent in a different way, opening your mind to new approaches to looking at a situation and developing resilience. People with autism have a unique way of looking at the world and inherent in this difference are many amazing gifts. 

This moving and valuable work will benefit fellow parents facing similar challenges. 

• Language: English
• Publisher: Dunford Jones
• Release date: Dec 1, 2017
• ISBN: 9780473416577

Book preview

Introduction

Driving from the hospital leaving the paediatrician, I felt heavy, sad and dense—my emotions barely under control and wanting to break down with grief. Emilia was seven and we had just received a diagnosis of autism—nearly seven years ago now.

I could not talk to Keith, my husband, as I knew we were both struggling inwardly, together and alone. By using words, it would make the diagnosis concrete and something we would have to dare to look at.

Aware since she was six months old that Emilia’s development was unusual, we had long been involved with therapists, hospitals and medical reports. We had learned that she had sensory integration problems, development delay, dyspraxia and an intellectual disability.

I wasn’t working because of the demands placed on my time by Emilia’s special needs. My weeks were busy with occupational and speech/language therapy groups at the local Child Development Centre. Emilia had a tremor, more marked upon waking, so this needed investigation. She had an EEG and an MRI scan. We saw an orthopaedic surgeon about her leg development, and she had to wear casts under her knees for a time to stretch out her ligaments.

I regularly visited the orthotist for special orthopaedic boots to support her feet properly. Genetic tests were run for Angelman Syndrome, Fragile X and other conditions.

This was a period of intense anxiety and fear for us all, not knowing how Emilia’s progress would unfold, what her capabilities would be and how ‘compromised’ her life would be.

Emilia could not walk far without getting fatigued, so as a family we were unable to get out and about much. Our New Zealand Mountain Buggy became invaluable, as it allowed us to push her around until she was nearly five years old.

Before she started mainstream school in the UK, we had to apply for ‘statementing’, which is the system where all needs are documented and the child is assessed for support and funding.

She received 25 hours a week to have this nurturing from a teacher aide.

The first day she went to school my grief was overwhelming. Until now, we had been inseparable, and I felt she could not cope without all the support and input I was giving out as a mother. It was a huge readjustment for us both, and my arms felt so empty.

With our 10-year-old son George also showing his unique way of looking at the world, we were drained parents struggling to keep ourselves afloat as a family. Sleep deprivation and coping with her sensory issues, quirky behaviours and frequent meltdowns impacted our lives daily and life was tough for all of us.

But on hearing the word autism, it felt like my world was caving in. What would this mean for us?

Emilia was the girl I had longed for. I had had two miscarriages before falling pregnant with her and had secretly hoped the babies were going to be girls. Now someone was telling me that my perfect girl was ‘imperfect’ in some way. Autism was a huge unknown to me and I was scared that a word was going to define Emilia or limit her in some way.

Little did we know back then that the diagnosis would become a gift to us… the gift of autism. Emilia is hardwired differently, but it is our challenge to try and understand her better rather than look through the narrow lens of the neurotypical brain.

Today, appreciating this gift, I am able to write about hope, transformation, and joy—precious things that I have discovered through needing to make sense of our lives together on a deeper level and to find strength when I had to dig deeper than I ever knew possible.

It is not an easy journey and continues to challenge us daily but I feel better equipped to use the tools I have been given and see the silver linings.

This book is my way of sharing what life with autism looks like for our family and the things that have helped strengthen me personally in living with ‘difference’. It is what I wanted to read but could not find when I was struggling with Emilia and her diagnosis. As parents, it felt like we had been given a destination with no map.

If you are living with someone who has a disability, you become a