What it’s like having an autistic child

By Helen, a Chestnut Tree House staff nurse

My 11-year-old son has a diagnosis of autism. He has a passion for all things Minecraft, loves animals – especially his dog – enjoys going to the beach and playing in the sand and sea. He is very creative, and we’ve recently discovered he has a talent for poetry. He attends a mainstream primary school and has two close friends who are very important to him. He is bright, articulate and cares deeply.

He was born a healthy baby and met his milestones without concern – but he screamed a lot. We put it down to reflux and managed the best we could on the doctor’s advice. I would pace the room trying anything to help him settle. This lasted until the toddler years. His tantrums were unlike any I had seen, and he would hit his head on the wall and roll around the floor. He often took his frustrations out on us – his mum, dad and siblings.

Professionals said it was just a phase he would grow out of. I believed them and hoped this was the case – but I knew this was not the norm. It just felt so hard and difficult to manage. Trying to comfort a child in such distress broke my heart.

Image of three children paddling in the sea.

Early days

Everyday tasks felt like a never-ending battle. Cleaning teeth, getting dressed, bathing, coming to the table for dinner. Trying to get him to school was nearly impossible without leading to meltdown and distress. We have carried him kicking and screaming to school countless times.

After some aggressive and destructive meltdowns and short-term exclusions, school supported us in applying for an Education, Health and Care plan (EHCP), allowing the school additional funding to help support him in class.

(An Education, Health and Care plan (“EHC plan”) is a legal document which describes a child or young person’s special educational needs, the support they need, and the outcomes they would like to achieve.)

Adjustments to the school environment have helped him to cope when he is feeling overwhelmed – and moving through the school he is improving year on year in being able to learn and achieve his potential. Parents’ evenings are now filled with pride in all his achievements, rather than fear.

We were told that they rarely assess for an autism diagnosis before the age of 7, so we waited patiently. He was diagnosed in June 2022 aged nine. He is aware of his diagnosis, and I hope this helps him one day to understand why the world feels differently to him and gives him a reason.

Feeling alone

In all honesty, I feel like I’ll never fully understand how my son thinks and feels in this world. I hope one day he will be able to articulate his feelings and be able to self-regulate his emotions. All I want for him is a bright future – just like any mum does for her child.

As a family we have felt terribly alone at times. Mainstream clubs, holidays and days out have always proved to be difficult for my son. This affects our two other children (seven and 12) significantly as they miss out on things a neurotypical family may enjoy together.

We have a handful of familiar places where my son feels safe and happy – which are predictable and rarely change. These places fill me with joy. We can feel like a ‘normal’ family – even if it’s just for an hour. Here we can enjoy a meal together without waiting – waiting is hard! We can enjoy a walk on a predictable route which is quiet and calming. We can holiday knowing what to expect when we arrive.

What has helped me most is not feeling alone – and this has been supported by an amazing lady called Claire Krost, who is a mother to two neurodivergent children. She has devoted her life and work to her children and supporting other families living with an autistic child. She has set up a networking group called Waking Up to Autism and it has been truly amazing for us talking to other parents who experience the daily challenges that come with having an autistic child.

Sourcing support

SENDIAS (SEND Information, Advice and Support) has also been able to help signpost and support me in our next chapter – secondary school. My eldest (neurotypical) son has ventured onto mainstream secondary school with a relatively smooth transition. As a family we now need to go in search of a school that will be able to accommodate my sons needs and adapt the educational environment to help him succeed. He deserves to shine. There is pressure on me to get this right for him and I will do everything I can to ensure he is placed in a setting that will respect, value and nurture his individual needs, and help him to feel safe and secure.

What should the world know? No two autistic people are the same. My son has similar traits to others, of course, but he is unique and wonderful. He cuddles, he makes eye contact, he is caring, bright and creative. He is sensitive and loyal.

People sometimes say things like “He must have a mild form of autism,” “he must be high-functioning,” or even “he doesn’t look like he has autism.”

My son is autistic. He functions very well if his environment meets his needs- if he feels safe, secure and prepared. If things change, become unfamiliar, become too loud or demanding then he will find this difficult and he will become emotionally dysregulated. Then, he will be very far from ‘high-functioning.’ He will lose control of his behaviour – which could mean he withdraws or becomes intensely angry. You cannot be a little bit autistic.

My son is an amazing little boy, and I know with the right support he will grow into an amazing young man. I will do everything in my power to ensure he achieves the success that he deserves. I will forever be his advocate when he cannot verbalise his needs.

"It is my hope that the world will learn to embrace difference, respecting and valuing the strengths of individuals. For my own part, I hope that my lived experience helps me to offer care with a mutual understanding and extra special insight offering an empathetic approach to nursing."

*All views are the author’s own. External links are not endorsements by (or connected to) Chestnut Tree House. Blog originally published 27 March 2023 and updated 21 March 2024