Autism is a lifelong developmental disability that affects how an individual communicates and interacts with others, how they perceive their environment, among others. Typically, symptoms of this disability show within the first three years of life.
Parents of a 5-year-old autistic child have shared the story of how their son was diagnosed with Autism Spectrum Disorder and how it changed their family.
Read below…
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: âDo you think he has Aspergerâs or something?â the idea he was on the spectrum had never crossed my mind.
Jamesâ 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 Aspergerâs and autism.
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 didnât 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 hadnât 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 three sessions with a private psychiatrist who specialised in young autistic people. Within four days of the initial casual conversation with Jamesâ 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 â at a time when we really, really needed answers.
Having said all that, the psychiatrist was not someone I âgelledâ 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 two appointments and he would only give us the diagnosis at the last meeting. We couldnât 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 wouldnât 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 heâs just a bit of a handful.
Tom and I arrived for our last session with the doctor. I had been (jokingly) threatening to burst into his office and scream âJust tell us!â Both of us knew it was a hugely significant day, when everything and also nothing at all changed.
We were on the edge of our seats and were almost slightly hysterical with expectation. He knew we just wanted his diagnosis so when his opening gambit was, âWhat do you think James has got?â both Tom and I wanted to laugh/cry and punch him. Who cares what we thought? As I recall, we remained calm and polite whilst stating that we thought he was on the spectrum. He then said âyesâ, he agreed.
Phew. After all that, we had a diagnosis. An official opinion. And when I say âPhewâ, that is exactly how we felt: relieved and in many ways pleased. We had answers.
With his diagnosis we could start the next phase in our lives. We could start to access help that would support James and the rest of the family, in an attempt to make life easier for us all.
Within a few weeks I had found a local autism charity that runs coffee mornings. And I also got stuck into the National Autistic Society website.
My husband and I tend to date things now BJD and AJD â before Jamesâ diagnosis and after Jamesâ diagnosis. We had of course always fully accepted James for exactly who he is. Moving forward, in AJD era, we had new knowledge and a massive community help us all along the way.
