Kay’s Story: A Mother’s Journey of Caring, Acceptance and Autism

My story is about learning, through love and struggle, to stop trying to change my autistic daughter and start truly understanding and embracing who she is.

(Names and images have been changed to protect anonymity).

A First Experience of Caring
When my niece was born at just 26 weeks, I was 21. I took a year out from university to help care for her, and it changed my life. She faced many health challenges, but she was incredibly strong.
That year was my first experience as an unpaid Carer. It gave me a sense of purpose and a deep passion for supporting others. It shaped my future — I later left my career in HR to train as a social worker, qualifying in 2010.

Becoming a Mum
Two years later, we welcomed our daughter, Amy.
Those first moments with her were the most powerful of my life. She was born in water, and I lifted her up myself. She didn’t cry — we simply looked at each other for what felt like forever.
I had imagined those early days would be filled with bonding and closeness. But very quickly, things began to feel different.

When Something Didn’t Feel Right
Amy struggled to feed from the very beginning. I was reassured this was normal, but things didn’t improve. She refused both breast and bottle, cried constantly, and didn’t like to be held close.
By day three, I rushed her to A&E after noticing her nappy was dry. She was dehydrated.
I felt like I had failed her.
From that point on, I could only feed Amy while she slept. Any interruption meant she wouldn’t feed at all. I stopped having visitors, turned off the doorbell, and structured our entire life around her feeding routine just to keep her healthy.

Searching for Answers
By five months, it was clear something more complex was going on.
Amy was seen by paediatricians and underwent multiple tests, including a barium swallow under general anaesthetic. She was described as “multifaceted” — a word that felt vague but heavy.
We were referred to specialists, dietitians, and sleep support services, and eventually to the community development team.
Daily life was incredibly difficult. Amy couldn’t settle in nursery, wouldn’t eat or drink there, and I had to reduce my working hours significantly.

I breastfed her in her sleep for three and a half years, and she didn’t eat solid food until she was four.

Understanding Amy’s Needs
Over time, it became clearer what Amy was experiencing. She had:

• Feeding difficulties and hypersensitivity in her mouth
• Sensory sensitivities
• Hypermobility
• Sleep challenges
• Difficulty recognising basic needs like hunger, tiredness, or temperature
• Challenges understanding social cues

At the time, I didn’t have the language or understanding to fully make sense of it.

The Hidden Impact on Me as a Carer
Caring for Amy changed every part of my life.
I was constantly exhausted and anxious. Social life became almost impossible, and relationships with family became strained. I was often told I was “pandering” to her — even by my husband.
I questioned myself constantly. Was I doing the right thing? Could I do better?
I felt isolated, misunderstood, and alone.

Loss, Change and Crisis
In 2018, my father passed away suddenly. He had always been my biggest support, and losing him left me feeling completely broken.
Around the same time, my marriage broke down, and my husband left. The impact on Amy was severe — she lost 5 kilos in six weeks and stopped sleeping.
Then I became seriously unwell with Covid. Amy struggled to understand why I needed to rest and became distressed and angry.
We were both caught in a cycle of anxiety, each feeding into the other.

The Autism Diagnosis
Amy was referred for an Autism Spectrum Disorder (ASD) assessment.
We waited three years.
When the diagnosis finally came in 2021, it confirmed what I had long suspected — Amy is autistic.

I felt a mixture of emotions:

• Relief that our experiences were valid
• Grief for the challenges she had faced
• Fear about her future
• Deep empathy for how hard the world must feel for her

From Fixing to Understanding

Looking back, I realise I spent many years trying to “fix” Amy — searching for answers, treatments, and solutions.
Now, I see things differently.
Amy doesn’t need fixing. She needs understanding.
My role is no longer to change her, but to create an environment where she feels safe, supported, and able to be herself.

A New Way of Living
Today, Amy is 12 years old. She is my greatest blessing and is learning to embrace who she is.
As a family, we have slowed down. I have learned to prioritise her sensory needs and to approach life with more patience and compassion.
I practise yoga three times a week, and together we are learning about gratitude and self-acceptance.
There are still difficult days, and caring can still affect my health. But I now feel more equipped to support Amy — and myself.

Finding Support and Community
One of the biggest changes has been connecting with others.
Joining the Barefoot Yoga carers group and Access to Heritage Art & Culture (ATHAC) has been life-changing. Being around other Carers who truly understand has reduced my isolation and reminded me that I am not alone.

What I’ve Learned as a Carer
Caring for an autistic child is not about having all the answers. It’s about:

• Listening deeply
• Adapting your world to meet their needs
• Letting go of expectations
• Accepting support
• And showing unconditional love, even on the hardest days

Amy has taught me more than I could have ever imagined — about resilience, patience, and what it really means to care.