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Autism - a parent's journey

Hope meets adversity by Kim Neil

She has recently started sharing her parenting experience in her blog Serene Anarchy. Here she describes her journey to get a diagnosis for her son, her feelings of worry, self-doubt and even grief.

Yet despite the challenges, she also describes a sense of hope.

This is Part 1 of her story.

"In 2013 when J was 20 months old he was officially diagnosed as being on the autistic spectrum. Although very high functioning, J’s diagnosis was still heart wrenching. It made me truly consider the things that I wanted for my child. When it came down to it, it really was quite simple. Ultimately, like most parents, I just want him to be able to lead a happy and fulfilled adult life. We have certainly been on a bit of a journey learning about how best to manage his needs and also our needs as a family. I am so grateful too that we were able to get an early diagnosis as this has made it so much easier to understand him better.

As a first-time mother, you are constantly questioning everything that is happening with your child. What is normal for one baby will not be for another. There are endless parenting websites and so called ‘experts’ that give you conflicting advice about how to approach different issues. It is no wonder that many of us suffer from at least some level of post-natal depression. At a time when we are particularly vulnerable, we are bombarded with supposedly well-meaning advice but it constantly calls our own choices into question.

When I was a medical student doing my paediatrics term, a very wise doctor told me to always trust a mother’s intuition no matter how neurotic they may seem. This has always stuck with me and when I had my own child, I tried to remember this. So, on one level whilst I tried to convince myself everything was ok, on another I had some concerns too.

Some of the things I remember about J as a young baby.

1. He hated shopping centres. Even from a few months old, if we walked into an enclosed space he would start to cry and become very unsettled. He had to be moving if he was sitting in a pram. Heaven forbid if I stopped pushing whilst trying to do some shopping! I was always very jealous of the other mums who seemed to be able to go shopping whilst their pushing their contented baby in a pram.

2. My child was always the one at mothers’ group who seemed unsettled and needed to be picked up or soothed. I have a vivid memory of us all at someone’s house with all the children spread out on beautiful blankets on the floor. Of the ten babies there, 2 were asleep on the floor, one was asleep in a carrier and 6 were lying there happy to watch the world above them. And mine … well mine was the one crying and unhappy and did not settle until we walked out of there.

3. Sudden loud noises. These always caused a major startle reflex and although I know this is normal, I remember always thinking his were so much more pronounced than other babies. He was particularly afraid of the vacuum cleaner and the sound of an exhaust fan.

There were many 'little things' in isolation that didn't really mean much, but when I pieced them together, and particularly in hindsight, the diagnosis was easier to see."

A message to my dear friend,

Thank you for sharing your story with the world. It will help many others that are on a similar journey. Please remember that no matter what lies ahead, you are an incredible mother, wife, daughter, friend and human being.


To read more about her parenting journey, visit her blog Serene Anarchy

To see more of Kim's stunning artwork, visit her website Kim Neil Gallery or follow her Facebook page

NOTE: My friend has generously given her permission to share her story. If you can relate to her experience, but have not yet seen a healthcare professional about your child, please speak with someone now. Autism Spectrum Disorder can be diagnosed at the age of 2yrs and early signs are often seen in children younger than this. The earlier your child is diagnosed, the earlier they can get the help they need.


Useful links

Sue Larkey is a highly qualified educator who has taught students with Autism Spectrum Disorder in mainstream and special schools. She won the Naturally Autistic 2013 International Award for Community Contribution and has authored many books on Autism Spectrum Disorders. Her website offers workshops, books and other resources on Autism Spectrum Disorder.


Related Children's Book

The ASD and me picture book

This colourful picture book provides simple self-exploration tools to help children identify their strengths and begin to tackle the things they find harder. The book explores a range of common difficulties, including communication, emotional and sensory regulation, and executive functioning, encouraging children to explore their personal challenges and abilities in an engaging and positive way.

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