James and Louise's diagnosis story
In this Stories from the Spectrum feature, Louise Williams writes about her son's autism diagnosis.
Louise Williams' son James was diagnosed as autistic at five-years-old. Years later, Louise reflects on James' journey, and the start of a new era - from BJD (Before James' Diagnosis) to AJD (After James' Diagnosis)...
When it was first suggested that James was on the autistic spectrum I immediately wanted clarification and answers.
James, at almost five, was quirky, eccentric, loud, challenging, funny and brilliant but autistic? No clue.
I was used to very frequent after school discussions with his Reception teacher about his behaviour but until the day I blurted out “do you think he has Asperger’s or something?” the idea he was on the spectrum had never crossed my mind.
James’ teacher advised us to go to our GP to ask for a referral to seek an assessment.
On the walk home from school that day my mind was racing, thinking about everything I knew about Asperger’s and autism. I had very limited files - we’re talking Rain Main level.
We got home and after I called my husband, my mum and my sister in law to tell them about my conversation with the teacher, I started googling autism. Within the first few articles that I speed read I think I understood that James was definitely on the spectrum, though I kept this thought to myself. After all, it didn’t matter what I thought. I needed to read up on the diagnostic process, to try to find out what lay ahead.
It appeared that James would need to be referred by our family doctor for a paediatric assessment at our local hospital and following that we would have to go to several appointments before we may or may not have a diagnosis. It all seemed a bit wishy washy. We wanted to know now if James was ASD or not so we could move forward and potentially be able to help and understand him in ways we hadn’t up to now. Waiting for a series of appointments with no end in sight was really unappealing. At the time my husband, Tom, received family health insurance cover as part of his employment benefit package. We decided to approach them to ask if the insurers would help us. When we called the helpline it became apparent that no one had tried to use the benefit for this purpose before. The woman on the line was helpful and lovely and agreed to cover 3 sessions with a private psychiatrist who specialised in young autistic people.
Within four days of the initial casual conversation with James’ class teacher we had an appointment booked with a doctor to assess James. Years later I know that we were extremely lucky to be able to access this kind of support, we will forever be grateful. Without it we undoubtedly would have been waiting for months - at a time when we really, really needed answers.
Having said all that, the psychiatrist was not someone I “gelled” with. To be honest, I hated him. He was not at all prepared for us when we arrived at the first appointment which I found to be extremely rude. He quickly went through the papers, statements and completed questionaires that we had provided him with. He asked James, my husband and I a few questions. I am CERTAIN he knew then, within the first half of the first meeting, that James was most definitely on the spectrum. Despite that he explained that we would need to come back for a further 2 appointments and he would only give us the diagnosis at the last meeting. We couldn’t argue. He was the expert after all.
My husband, James and I went back the second week. The doctor barely asked James any questions at all this time. James was incredibly chilled on the floor in his office playing with some of the toys. The doctor asked my husband and I to give additional background and context though we felt he learned nothing new from us in that meeting. When planning the next appointment he said we wouldn’t need to bring James with us.
Another week went by. Family and friends who knew what we were going through offered support, kindness and love. The majority also batted the idea that James was autistic away, saying he’s just a bit of a handful. Having said that, most of them had my previous Rain Man level knowledge of autism.
Tom and I arrived for our last session with the doctor. I had been (jokingly) threatening to burst into his office and scream "JUST TELL US". Both of us knew it was a hugely significant day, when everything and also nothing at all changed.
