When my gorgeous boy had just turned 4 years old he became seriously ill with an unexplained virus. After many tests it was concluded that he had suffered a severe reaction to the STREP virus and when his antibodies tried to attack the virus, they also attacked his brain. Overnight my son started to experience a number of vocal and physical tics and some autistic behavioural traits.
Well I first heard the words, 'autism is an excuse for naughty children' a year ago and I honestly thought that I would never hear them again, that this was just a one off ignorant comment made by an uneducated and 'nasty' person, but how wrong was I? I am surrounded by people who know and understand Tom, so it is always a shock to the system when comments are made like this.
This story touched me completely, as a mother of an autistic child. Why is this allowed to happen? Why are so many of our young people who are on the autistic spectrum placed under the Mental Health Act, sectioned and then put into psychiatric units were the individuals looking after them have very little training with regards to autism?
I'm one of the relatively lucky ones - I'm articulate, I managed to work for about twenty-six years and became a successful published author; but the hard and terrible lesson I learnt along the way is that there is a crude and xenophobic core of creatures in our society who care nothing for others and turn on anyone perceived to be different.
I feel love on a fierce level, I feel protective, but without means with which to practice it. I feel anger when the stories of social dysfunction at school or gatherings reach me. I feel angry when children don't have the patience for him and I worry about his outcast status. I feel guilt as strongly. I feel it when I command attention over him, I feel it when my patience runs thin...
The stories told within the book illustrate beautifully, I feel a father's perception of and reaction to experiences in life when caring for a child with special or additional needs. Many of the real life stories take us from the birth of the child up to adulthood, sharing many happy and painful experiences along the way.
I very much dislike the word "suffer" and its association to individuals on the spectrum. This conjures up images of bleakness and more importantly I feel creates a link to the medical model, making autism appear as a disease which it is not. Autism is a neurological and developmental 'disorder' in which it is all persuasive. Therefore, yes it is disabling, but it is not a disease.
I knew once mother hit retirement age I would become a family carer. So I lived my life - went to university, socialised and partied hard, travelled the world and met interesting people. Whether in local politics, national conventions or international conferences I have made my voice heard whether people wanted to hear or not.