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.
One huge fact that we will never reveal is that we are lonely. We are often on the outside looking in, looking in at both society and our own child, unable in a way to reach both. We are isolated from society due to our caring role, lack of financial support and understanding. We are isolated from our child as we are never truly allowed 'inside'.
I know Tom is not yet 6 but he has only ever been invited to one birthday party and we have never held one for him. This may change as he gets older and I always feel guilty about this although it is irrational. We do celebrate in other ways though, last year we went to his favourite farm. I am not sure where we will go this year, maybe the farm again.
It is a terrible thing to lose one's faith in one's country, and if I'd not been asked the independence question I might well have kept quiet about it, but I don't want to be queried in future days about what I did during the debate and have to reply, "well, I didn't want trouble so I just kept my head down."
On Thursday 23 January, my team at the Babylab at Birkbeck, University of London, together with similar teams from across Europe, is launching a new study of infants with older siblings with autism or ADHD. For infants with an older sibling with autism or ADHD, the chances of also having one of the conditions may climb to 20%.