Finding Llewelyn’s Voice – Our Journey to an Autism Diagnosis
Natasha Louca-Jones shares her family’s journey to a diagnosis
It was September 2018. Llewelyn was 2 years 9 months and his journey into part time education was about to begin. Like every parent, my husband and I were filled with excitement. So many adventures awaited him, but deep down I was anxious.
I remember the other children as we stood in line waiting for the nursery doors to open. Some playing happily together in the playhouse, shouting, laughing and singing nursery rhymes, each one acutely aware of the other. How I longed for Llew to join them.
There was nothing glaringly wrong when Llew was born but on numerous occasions my gut said something was “off”. To this day I cannot pinpoint what it was, but I felt it.
As the weeks went by it was not long before his differences became apparent to his teachers. He was the child who was always running out of the circle, exploring things other children weren’t into. He wasn’t interested in playing with other children or sitting quietly during reading time. He preferred to be outside, by the trees, plants, flowers or in the dirt as opposed to the actual playground. Running around, feeling the wind in his hair and the sun on his face. He was extremely tactile, a real sensory seeker, with love, innocence and kindness in abundance. He had a talent for balancing objects, he would spend hours tentatively hovering over them until a perfect equilibrium had been found. He loved to build and his ability to recognise symmetry was advanced behind his years. His cognitive ability astounded us at times, yet he could not speak.
Llew’s nursery was a Welsh medium setting. We made the decision from the outset that we wanted to raise our children bilingually. Llew was never a big talker and at two years old he’d accumulated a handful of words. His health visitor assured us he was like every other third child. “Oh he has two older sisters. They do all the talking for him, he’ll talk when he’s ready”.
Eventually by the age of 3, Llew had lost his words altogether.
In the December we decided to seek additional help and so commenced our long journey to diagnosis. When I say journey, it was more of a battle. With local authority and health services severely overstretched and underfunded, access to resources were limited. The first step was to notify the local authority of Llew’s needs. It was vital that everything was in place to ensure a smooth transition for when Llew was to start mainstream nursery school the following year.
In the meantime our GP referred Llew to both NHS speech and language and neurodevelopmental teams, but we were warned that the process would be a lengthy one. It could be months before an appointment with either department could be arranged. We felt helpless and as the weeks and months passed the longer Llew went without vital help and support.
So we sought the advice of a local charity, who in turn helped us obtain a private speech and language assessment. We anxiously forwarded the therapist’s report to the local authority unsure if it would make any difference. We fought for 1-1 support for Llew and eventually we got it.
Llew started mainstream nursery in September 2019 and his differences were becoming more apparent as time went on. The school did everything they could and despite the additional support it was clear that without the specialist training available, his teachers were going to find it more and more difficult to assist with his learning. Llew often played alone in the quiet room, the set activities and tasks were becoming less and less appropriate. He was becoming more and more excluded. It was heart breaking to witness.
Llew was due to start reception class by the following September, which meant full days in school. We made the decision that when the time came we would place him in a specialist resource base within an English medium mainstream setting. Our priority was simply for Llew to be able to communicate and as English was the main language at home, for us it was the obvious choice.
Various meetings with Llew’s ALENCO, and educational psychologist followed. Along with numerous trips to the SLT, audiology, and consultants. Then, finally, 4 weeks before Llew’s 5th bday, he was given an official diagnosis. Autism with speech and language delay.
Any parent remembers odd details of that day vividly. What the room looked like. What chair they were sitting in. What they were doing when the doctor said, “There is no doubt in my mind that your child falls on the autism spectrum”. Llew was on the floor playing with trains. Innocent. And at almost 5 years old, acutely unaware of the lifelong label he had just been given.
I silently sobbed that night. Part relief and part fear for the future. I was unsure how long we would have to keep fighting for essential services, unsure if his therapy was right, unsure if he would ever live a normal life. The diagnosis had forced me to change my expectations. I still have hopes and dreams for Llew, perhaps they aren’t the same as they used to be but they are still there. Ultimately I long to hear his voice, to hear him say ‘Mummy’ or when I tell him I love him, to hear him say it back.
I realise there is a long road ahead and there are many challenges that autism can present. It is a vast, wide and colourful spectrum, which at times makes it so hard to know what choice to make, or feel like you’re ever doing the right thing. There is a minefield of information available from organisations, charities, and medical professionals. Yet some of the most practical, and insightful things I have learnt have come from other parents who are living with autism day in day out. Their stories have inspired me when I’ve needed it, and also given me hope for what Llew can achieve.
I always try and focus on what Llew and his condition brings to our life instead of what it takes away. He brings out the best in us and everyone around him. His love, sweetness and beautiful smile are infectious. Autism has undoubtedly enriched our lives but there is one thing of that I am sure…I will never stop fighting for our Llew.