My family’s journey with Autism

I am not sure for how long we were silent, but it did seem like a long time. I don't think either of us were surprised though; we had fought for so long to be taken seriously with years of politely listening to the empty reassurances and well-meaning speculation of others. But now the Schrödinger’s cat moment was over, the box had been lifted and uncertainty resolved; our beautiful three-year old son had been diagnosed with Asperger's Syndrome, Primary Language Disorder, Hyperactivity and sensory processing issues. I remember thinking, but what has actually changed? He was still the same James as a few moments ago; a boy content in his own little world, a boy of few words save for stock phrases harvested from television programs, a happy boy whose favourite gesture was a big ‘thumbs-up’. No, nothing had actually changed, and yet everything had changed.

It was difficult for us both but it was especially difficult for Natasha my wife, whilst I had three other children, James was her first and only child and she took it very hard. The Consultant said we were experiencing grief for the loss of what we thought our child would become, but he added that whilst the destination had changed, we had considerable control as to where the journey took us. It took a few months to come to terms with the diagnosis followed by two years of limited access to professional help. We followed the advice we were given and accepted any help that was offered, but after two years we came to conclusion it simply was not enough. So, one weekend in the Spring of 2010, Natasha and I sat down over a bottle of wine and started to plan our new journey with our little boy.

Natasha decided to change career from being a Personal Assistant at a financial services company to working in a special needs school in order to gain practical experience in teaching techniques. I always had an interest in Psychology, so we agreed that I would take an academic route and study the subject with the Open University. It was a huge commitment to study for a degree, support James and continue with my career in Architecture and Innovation at a well-known financial services company. Natasha’s journey was even more challenging; moving from a structured office environment to the lively and unpredictable setting of a school that helps some profoundly disabled children.

Over the next six years, Natasha and I progressed through with our plan. I studied at every opportunity and attending every conference I could on child development and autism. I lost count of the number of books and papers I read over those six years, but each one added an extra quiver to our bow. For example, James was mostly non-verbal, and a kind tutor sent me through many papers that looked at child development through discursive analysis of children’s interactions. The one that resonated with me was a discussion around how children learn social roles through taking positions in the conversation. Whilst children adopt various roles with other children, for example they could be 'teaching' another about a toy, conversations with adults tended to migrate towards the adult just assuming the dominant ‘teaching’ role. So, I played the role of the child sometimes; no longer trying to ‘improve’ James’ speech, just listening and responding with verbal and non-verbal cues indicating deep interest. No teaching, no corrections, just practice, lots and lots of practice. He made dramatic improvements in his speech over a twelve-month period. Natasha really

embraced the work at the school and passed all her exams to become a level-3 Teaching Assistant. She structured lessons and social trips each with a specific aim, she was amazing.

In October 2016 I was awarded a First-Class Honours Degree in Psychology at the graduation ceremony with my mum, daughter Becky, Natasha and of course James being there for me. It was a great day made very special when I heard my family cheer and shout as I went up on the stage for my moment in the spotlight. The most precious memory I have of the day was when I left the stage and looked over to see them with ear-to-ear smiles, including James who was also doing a big ‘thumbs-up’.

James attends a mainstream school and whilst there are still some issues, his speech is excellent, he is happy, and I am determined he will have the future he deserves. Autism has touched my family in so many ways; I have a cousin and a nephew who are also on the spectrum. The key message is that I think too often we collectively fail to realise how much influence we have on outcomes. I joined Xtrable as I am convinced that it will help resolve this and it will be a key factor in the ongoing success of disabled, autistic and neurodiverse people.