the time to fully appreciate their good fortune. I count myself among that number. In fact, until I was invited to help write this book, I had little awareness of how devastating living with autism in its various forms could be.
The chances are, however, that, by picking up this book, you have been touched in some way by the condition. You may be a parent, relative or friend of someone diagnosed with autism or someone coping with it as a carer. Alternatively, you could be someone in the world of the teaching or caring professions whose contact with autism may be limited but you have a need to find out more about the condition in order to gain a better understanding of how to deal with it within your own field. Or, of course, you may be a person with autism yourself.
Whatever your reason for picking up this book, I truly hope it will enlighten you in the same way as Anna’s story has enlightened me. Anna, I know, does not want to be put on a pedestal for what she has achieved, but it’s so hard not to place her there, for she is a remarkable woman.
Faced with the challenge of finding appropriate educational provision for her two boys, Anna, and her husband Sean, decided upon a course of action that most people would never have contemplated: founding a specialist school dedicated to the care and education of young people with various forms of autism. It was a mammoth task that, on the face of it, was one of folly – but how they have proved everyone wrong!
There are several good reasons for writing Not Stupid. From a human-interest point of view, it is a remarkable story of a couple’s love and dedication for their children and their determination to provide them with as good a chance of a happy and productive life as other, more fortunate youngsters.
On the other hand, their story highlights the barriers and misunderstandings placed in their path towards that goal by those who were either too ignorant or too inflexible in their ways to appreciate fully the scale of the problems faced by so many in society when it comes to autism.
Not Stupid highlights the depths of despair Anna and Sean endured in their quest to help their boys, and the boys’ torment, which, particularly in their time in nursery and mainstream education, saw them subjected to ridicule and bullying.
That said, this is a story of hope. Anna and Sean have proved that mountains can be moved if you have the determination to focus on your goals, and that living with autism can be made easier when it is more fully and widely understood.
I trust this book will, in some small way, help towards that end.
Looking at the psychotherapist’s report, I felt a rush of blood from my feet going straight to my head. ‘It says here my son’s got Asperger Syndrome.’
‘That’s right, Mrs Kennedy.’
‘Well, this report says it was diagnosed three years ago – this is the first time we’ve heard anything about it!’ I was incredulous. How could this total lack of communication over such a vital diagnosis possibly have happened?
Ever since his traumatic birth, our son Patrick had endured poor health, and his experience of life in his nursery school and, later, in a mainstream school had resulted in copious tears and frantic tantrums since day one. Now at last we knew why.
‘Why didn’t anyone tell us this before?’ I demanded.
‘We just assumed you knew.’
My husband Sean and I were attending an annual review at Patrick’s school in 1997, in Hillingdon, northwest London, to discuss his progress – or, should I say, his significant lack of it. The head teacher, Patrick’s teachers and the educational psychologist present at the meeting didn’t know what to say to us when they realised no one had had the foresight to inform us of Patrick’s condition.
To be honest, the rest of the meeting was just a blur and I was unable to concentrate on anything being discussed because I was selfishly thinking, Christ, both my boys have autism! This is terrible. What have I done wrong?
When we arrived home from the school it soon became obvious that Sean was reluctant to talk about Patrick’s condition at all. Instead he preferred to discuss ways to get back litigiously at the doctor for failing to inform us when Patrick had been originally diagnosed.
All this was in the wake of learning, shortly earlier, that our younger son, Angelo, had autism. At the time we had known nothing of the condition. If I remember correctly, my first instinct was to wonder how long Angelo would live and I had immersed myself in a quest to find out as much as possible about the condition, with varying degrees of success, ever since. At least the literature I had recently read had given me some idea of what Asperger Syndrome was.
Nevertheless, the news that Patrick had it made me realise that my dreams of one day having children of my own and a carefree life were turning out to be a far cry from what I had hoped. Because my own childhood had been so regimented, I had been looking forward to a more relaxed way of life when, eventually, I would settle down and have a family of my own. I’d had dreams of days on the beach with my kids building sandcastles and having fun. Now all those aspirations seemed like a distant memory.
I decided to speak to the consultant paediatrician at Hillingdon Hospital to find out why we had not been informed of Patrick’s diagnosis three years earlier. The paediatrician insisted he had, indeed, informed us of his diagnosis at the time. ‘I think we would have remembered something like that if you had,’ I replied angrily.
My only recollection of that particular meeting in 1994 was that the paediatrician had said, ‘Your son has got very difficult behaviour’ – and that he had recommended we send him away to a residential school, but there was no way Sean and I would even have considered that, particularly as Patrick was only 4 years old at the time.
Sean and I now found ourselves setting out on a new path in life that would, over the following years, see us embroiled in a long and drawn-out lobby with the civic and education authorities as we battled to provide our sons with the same rights to an appropriate education and way of life as other, more ‘normal’, children have.
There’s no doubting that a diagnosis of any of the conditions in what is known as the autistic spectrum would plunge any family concerned into a deep sense of crisis – and we were certainly no different. As with most people, our knowledge of autism prior to Angelo’s diagnosis had been practically nonexistent and we can now recognise that what many people can see only as a naughty child can be anything but the case. We had now entered a world where only those directly affected can truly appreciate the difficulties and barriers that need to be overcome.
Autism, we discovered, affects around 520,000 people in Britain. The condition, a brain disorder that impairs the ability to relate and communicate, is unrelated to intelligence. In fact, the autistic spectrum includes both highly intelligent individuals and others with severe learning needs. People with autism face difficulties in interacting socially. They have poor concentration and, in some cases, can display disruptive behaviour, which many observers unfamiliar with the condition often put down to naughtiness. Hopefully, this book will go some way to explaining what autism is all about, will reassure parents of children recently diagnosed with the condition, and hopefully, educate those who do not fully understand all the difficulties faced by sufferers and their carers.
There are several instances in my past that have had a profound bearing on my personality and that have shaped me into the type of person I am today. At the very least, the following few pages will illustrate why, to me, barriers are there only to be broken down.
It was back in 1984 that I first met my husband Sean. It was not long after my family had moved back to Middlesbrough from Italy – an unplanned return following the destruction of my parents’ home by an earthquake in Monte Cassino.
The earthquake had been an extremely frightening experience. My mother