Feeling helpless

Throughout October, we’re sharing families experiences of diagnosis. Mum Natasha tells us how it was finding out her son has autism, with speech and language delay.

Early years

“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, but I felt it.

“I remember standing in line, waiting for the nursery doors to open, all too aware of the other children. Some playing happily together in the playhouse, smiling, laughing and singing nursery rhymes, each one acutely aware of the other. How I longed for Llew to join them.

“He was not interested in playing with other children or sitting quietly during reading time. He preferred to be outside, amongst the trees, flowers and dirt. Rather than running aimlessly around the playground with his class mates, he was the child always running out of line. Spinning like a whirling dervish, gazing up at the sky, feeling the breeze in his hair and the warmth of the sun on his face.

“Llew was extremely tactile, a real sensory seeker, with love, innocence and kindness in abundance. 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 beyond his years. His cognitive ability astounded us at times, yet he could not speak.

“Llew was never a big talker. At two 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 three, Llew had lost his words altogether.”

Journey to diagnosis

“That December we decided to seek additional help, and so commenced our long and exhausting journey to diagnosis. Tireless exchanges between the local authority and health services who were severely overstretched and underfunded.

“Thankfully we had the support of our GP who referred Llew to both NHS speech and language and neurodevelopmental teams, but we were warned that the process would be a lengthy one.”

“We felt helpless and as the weeks and months passed the longer Llew went without vital help and support.”

“With the help of a local charity, we obtained a private speech and language assessment. We anxiously forwarded the therapists 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. His differences 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 finding 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.

Autism with speech and language delay

“Various meetings with Llew’s ALNCo and educational psychologist followed. Along with numerous trips to the SLT, audiology, and consultants. Then, finally, four weeks before Llew’s 5th birthday, he was given an official diagnosis- autism with speech and language delay. I can recall details of that day vividly. Exactly what the room looked like, what chair I was sitting in. 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 a train. Innocent. Almost five. Unaware of what 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.”

Three years on

“Three years on (the small issues of a global pandemic and divorce aside) Llew is now settled in a specialist resource base in a mainstream setting. He communicates using a picture exchange communication system (PECS) and his days are planned out with the use of visual schedules, cues and timetables.”

“He thrives on routine and predictably. More importantly his needs are now understood, his differences embraced and neurodiversity celebrated.”

“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.”

Looking to the future

“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, constantly questioning your own judgement and motherly instinct. Whilst there is a minefield of information available from organisations, charities, and medical professionals, 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 disability bring to our family 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 if I have taken anything from these last few years it is this…no matter how helpless you may feel or futile your efforts may seem, never give up. Trust your instincts, back your resilience and make a nuisance of yourself if you must. If you don’t fight for your child, no one else will.”