Long ago, I watched a young man create an elaborate ‘cat’s cradle’. It involved perhaps a half kilometre of twine, stretched from cupboard door to cupboard door, rendering the kitchen unusable during its construction. It was breathtakingly beautiful in its appearance, an anachnidal grand design, and required the foresight and mathematical skills of a chess player to reach its successful conclusion.
From the other side of this web, the young man’s Mother explained to me that this creation was re-made every single day. Every night she would carefully unwind it, roll up the twine in readiness for the new dawn – and finally be able to access her kitchen again. She cooked at night, whilst her son slept; a microwave lived in the garage, to reheat the meals for her family.
She wasn’t complaining, merely explaining why we were separated thus.
You are unlikely to have met her; she and many, too many, others like her have no time to attend the Mother and Baby groups, nor spend time in the golf club. They never get down to the local pub; they have no time for social gatherings.
They are the unseen, the unheard. The full time companions to the army of young people who arrived home from the maternity wards full of vigour, lusty of lung, demanding of attention, but who are now condemned to a lifetime of suspicion and mistrust from the general public due to their unusual thought patterns and ways of relating to the world.
They are the autistic children of Britain. Neither medically nor physically – albeit that some have additional problems – requiring of professional care, merely oceans of patience, quiet understanding, perseverance and protection. Those who have grown to adulthood require an additional talent – that of strength. It is no mean feat to persuade a strapping six foot son to bed or away from danger of which he is unaware.
The young woman I was talking to, had hope though, there was, she told me, a Doctor, a Dr Andrew Wakefield, who had apparently discovered evidence that their was a link between the triple vaccine (MMR), bowel disease, and the autistic condition of her child. Her son had been developing ‘normally’ – for want of a better term – until he had been immunised. He was part of the horrific increase – from 1 in 2000 when the MMR vaccine was introduced in 1987 to an incredible 1 in 64 children denoted autistic in the UK today.
She was hoping to join a group bringing action against the government for the damage she believed was caused by the MMR vaccine. The result she hoped would be worth more than money, which was not her objective – she wanted Dr Wakefield to be funded to do more research. If there was a provable cause, there might be a cure.
‘Cure’ is an dangerous word in the world of autism – there is a strong body of opinion which rejects any notion that autism requires ‘curing’, it is a ‘difference’ an ‘otherness’ which only represents a problem to those of us not so blessed, and we have no business trying to cure ‘differences’.
That is an ideological viewpoint that I am only prepared to accept from those who also walk in that young Mother’s shoes. If you do walk in her shoes, and that is your viewpoint – then respect, I salute you. However, I also have profound respect for her desire for her son to take an easier path through life and be able to live amongst and communicate with the majority of the population without the heavy burden of ‘otherness’.
The main stream media took up the cause of Dr Wakefield. First he was a hero, a popular story line for them to run; then the forces of establishment came down on him. There was visible panic amongst the medical hierarchy – measles was on the increase in areas of the country that had taken heed of Dr Wakefield and refused the government immunisation programme. Despite his initial paper being peer reviewed by 13 co-authors, and merely calling for ‘further research’ into a possible link, the BMC removed the license to practice from Dr Wakefield and Professor Walker-Smith on the grounds that there was a flaw in the paperwork for ethical approval of his studies.
None of the parents involved in that study made a complaint to the GMC, the only submission was from Brian Deer, a journalist for the Sunday Times, who has written several disparaging articles regarding Dr Wakefield. Today the British Medical Journal proudly trumpets Brian Deer as author of its leading article which now claims that the entire affair was a ‘deliberate fraud’ on the part of Dr Wakefield. A cry which the main stream media have taken up with alacrity, turning 180 degrees from their original stance. Houston, we have a new headline!
I have no idea of the cost of those GMC hearings, or of the research that went into discrediting Dr Wakefield, or of the cost of lost hours of training and experience in removing those two Doctors from practising. I do know that if a fraction of that money had been spent on discovering why 1 in 64 children is now blessed with autism, rather than in discrediting a call for more research into a possible causal link – that young woman facing the rest of her life watching a fine young man create cat’s cradles all day would have been much better served.
Dr Wakefield’s research has been called ‘a cruel hoax’ – the cruellest hoax of all is that no one appears to care what the cause is, so long as it is not the products of Aventis Pasteur, SmithKlineBeecham, or Merck.