Autism is often talked of as a label but for me it is a way of being.
It means seeing the world in a very intense and colourful way. Yet, at the same time, being autistic can also be extremely challenging; seeing, feeling and experiencing life with such intensity can be completely overwhelming.
That sensation that most of us get when we scrape our fingers down the blackboard is what I feel in abundance a lot of the time – especially when I’m travelling on public transport, when I’m in large crowds and in social situations.
This is because I can’t process information with a lot of people interacting at the same time. So what happens is I just shut down.
Last year I turned 50 and it marked 10 years since I was diagnosed as being autistic. The diagnosis changed my life radically.
Up until that time I was unconsciously overcompensating for something I could never give a name to.
This was physically, mentally and psychologically overwhelming for me, so much so that all my life up until the time I was diagnosed with autism, I suffered severe bouts of depression and anxiety, even spending time in hospital.
It is quite ironic that what I regarded as one of my greatest achievement — my adaptive skills — became my greatest impediment and barrier to being diagnosed and getting the help I so desperately needed.
Every autistic person is different but my story is not unique.
When my autobiography was published in 2009, many autistic people contacted me to say that my struggle mirrored theirs. That they too had lived a provisional existence living in a cloud of unknowing that they were autistic.
Receiving an official diagnosis of autism was not a distressing experience for me; it was living in the unknowing that had been so distressing.
But in this context ‘diagnosis’ is too clinical a word to describe a moment in which my humanity was so deeply affirmed and understood.
A new world opened before my eyes and with it a very new opportunity to live on life’s terms and not the superimposed life I was forcing upon myself before diagnosis.
Perhaps it is true to say that my experience of being autistic has four chapters. The first chapter, which I call denial, was all about running away from the overwhelming suffering resulting from being humiliated for being different.