As an autistic 16-year-old I was surprised to discover that we have a lot to learn about autism. It troubled me that a lack of knowledge could lead to a worse life for many people with autism. At first I thought that it was society in general who needed to "up their game". If society could make alterations for people with autism in an accommodating way then surely people with autism could achieve more. The key to achieving this aim would be to raise awareness and ensure that legislation allowed people with autism to meet their potential - and society in turn could reach its potential. Research shows that society and our culture plays an enormous role in defining our outcome as a person - autistic or not.
Society also thrives with the fostering of knowledge through scientific endeavour. It is through this process that we discovered autism, and improved diagnosis and treatment. I am thankful for these advances and have experienced the way society has begun to make accommodations to supplement this knowledge throughout my life.
When I was 3 years old (1988) experts lacked the knowledge to make an autism diagnosis, but now a lay person may be able to recognise my array of atypical behaviours as autism. At 12 years old, I received a diagnosis and a place in a transformational inclusive educational autism-specific base set within Dyce Academy, Aberdeen, a mainstream school. With their help, my anxiety dissipated and I began to understand the mechanisms of social interaction which came so naturally to my peers. This allowed me to move from a prognosis of a life-time of residential care and chronic mental health problems to leading a typical and independent life. I am now married with a family, and work as a scientist at the University of Aberdeen.
My journey to this point has been driven by a passion to further our understanding of autism which I have nurtured through a degree in pscyhology and a PhD studying "action perception in autism". As result, I recently published a study (with Dr Justin Williams and Dr Peter Neri) in the Journal of Neuroscience, which showed that people with autism can recognise human actions as effectively as typically developing individuals.
Whilst I am proud of this research finding, the reality is that it only represents one small step in the overall marathon to understand autism. In spite of recent advances in research and societal adaptation, many people with autism still face challenges. Only 15 per cent of adults with autism are in full-time employment. One quarter will never learn to speak and 70 per cent will also develop an associated mental health problem. The economic impact of autism in the UK is large costing £32 billion/year, but yet we only spend £4 million/year on autism research.
I am proud to be part of an autism community which has successfully campaigned to ensure that legislation has been put in place to improve social care, education and healthcare. England has the autism bill; whilst the other home nations have created their own autism strategies. I was part of a group which campaigned for the Scottish autism strategy and I witnessed the collective focus of individuals with autism, families and professionals to improve the lives of people with autism.
My hope is that we can now harness this focus towards the furthering of our knowledge of autism through research. We urgently require evidence-based interventions for autism, but yet the standards of research to support interventions fall significantly below that of other medical conditions. We understand that autism exists as a category but we cannot explain the enormous differences in people with autism across the spectrum. The reality is that legislation can only stretch as far as the limitations of our knowledge. If we are to truly improve the outcomes for people with autism we must realise that knowledge is power - "Scientia potentia est". Thus, it is science that can unlock a better future for people with autism.
It is tempting to say that my story shows that autism can be overcome with our current knowledge of autism and societal accommodation. But, really, my story shows how knowledge can transform individual lives. There are still many individuals with autism whose needs require further advancements in our knowledge of autism for them to meet their potential.
Autistica, a UK-based autism medical research charity, have recently unveiled three research priorities raised by the autism community: i) early intervention, ii) mental health and iii) autism and ageing. I hope that the autism community will support me in my belief that their engagement is critical to the marathon journey to understand autism. If we achieve this aim, we can improve the lives of those affected by autism.