Confessions of a TA Team Member

Please read this account of the experiences of a parent who is now a Treating Autism Team Member

I live just a few miles from Crosby Beach, home to Antony Gormley's 'Another Place', 100 life-size iron men dotted along the foreshore, stretching several hundred yards out to sea.

Although this may not be the way Gormley intended his work to be viewed, for me his motionless figures symbolise the paralysis of our society in the face of the rising tide of autism. Twenty years ago the incidence of autism was estimated at 1 in 1,000; ten years ago it had risen to 1 in 500: today it stands at a massive 1 in 100; in ten years' time . . . . . ? The tide is sweeping in with terrifying speed, while the medical establishment remains fixed to the spot, as utterly impotent as Canute, the waves of impending catastrophe lapping at their frozen feet.

I joined Treating Autism in my desperate quest to find help for my beautiful son, who became an autism statistic just before his third birthday, his childhood stolen by the Pied Piper of perseveration and pervasive developmental disorder. I found in Treating Autism the support, information and above all hope for my child which, sadly, I had failed to find during the course of innumerable consultations with mainstream medical professionals. I joined the Treating Autism Team because I wanted to share with other parents the hope and belief that our children can be nurtured back to health and happiness, that it is possible to restore some quality to their shattered lives. I wanted to pass on the message, to help spread the word . . .

Hmmm . . . yes, that's right, I wanted to spread the word, but . . . One day, shortly after joining the TA Team, I sat down and reflected on my experiences since my son's diagnosis more than seven long years ago. And I realised that, far from shouting my message from the rooftops, I had, gradually and insidiously, become tight-lipped, taciturn, averse to talking about my son's treatment or my hopes for his future. It was not always so. In the early days of my research into diet and biomed, I would innocently ask the GP for his opinion on the GF/CF diet. I would talk to the paediatrician quite openly about candida and leaky gut. To the gastroenterologist, I would enthusiastically expound on the probable link between bowel dysfunction and neurological problems. It was some time before I noticed the blank look, the pursed lips, the suspicious frown, the almost imperceptible shake of the head, signifying, as I came to understand, 'just another parent in denial, clutching at straws'. And then followed the inevitable refusal to provide the treatment or test which I had requested.

After a series of fruitless appointments, it became clear to me that, if I wanted to access the limited medical resources available on the NHS to children with autism, I would have to learn to play the game. When discussing my son with any medical professional, I would no longer make mention of any of his symptoms other than those which were relevant to the treatment I was seeking to procure. I would not so much as hint that there may be a connection between my son's autism and his bowel problems, and, heaven forbid, the suggestion of any possibility of significant improvement in his condition, let alone recovery, would never pass my lips. And my new strategy worked. Now, more often than not, at the end of a consultation I found myself leaving the doctor's surgery with the desired prescription, previously so elusive, held tightly in my hand. However, this marked the beginning of a double life in which my belief in the validity of biomed became an ever more closely guarded secret.

School was another battleground upon which I was forced to adopt defensive strategies in my secret war on the terrible enemy that had abducted my child. My first skirmishes with the school authorities arose, fairly predictably, over my son's diet. He was following a very healthy Specific Carbohydrate Diet, with its emphasis on whole foods, fresh fruit and vegetables, with no refined sugar, processed foods or additives. His packed lunch consisted of a flask of vegetable soup, avocado pear, chicken or pure meat sausage, home-baked almond cake and fresh fruit. This fare, of course, was deemed to be rather dubious, and distinctly out of kilter with the ubiquitous white bread sandwiches, crisps, chocolate and sweetened drinks which filled the lunch boxes of his fellow pupils. It was pointed out to me that my son's 'unusual' diet could mark him out as different from his peers and draw unwanted attention to him. My suggestion that his lunch could be held up as a good example for his classmates to follow fell on deaf ears. My dealings with the medical profession had taught me that it would be foolhardy to imply that his diet could have any positive effect on his autism. However, I managed to assuage the righteous indignation of school staff by referring to my son's bowel problems and insisting that the diet was supported by his gastroenterologist (which, I must admit, was stretching the truth somewhat).

My son has since moved to a different school, where members of staff are much more helpful and supportive of his diet. Nevertheless, I remain very reticent regarding the rationale for the diet, and have never disclosed any of the biomedical interventions which I have used. I am, however, on very good terms with his teachers and sometimes wonder whether I should be a little more candid. What dissuades me from greater openness is the fear that any confidence entrusted to staff may be a hostage to fortune, which, should my son's behaviour deteriorate in the future, could possibly be used against me. Trust is indeed a fragile flower . . . .

The trouble with secrecy is that it can become habit-forming. Over time, I began to feel increasingly reluctant to discuss biomed not only with doctors and teachers, but also with friends, extended family and even with other parents of children with autism. I felt alone and isolated. Faced with the unrelenting scepticism of the medical authorities, my confidence had gradually been eroded to the point where I doubted my own ability to convince others of the value of biomed. I never doubted biomed itself. I had seen improvements in my son which I was certain were the result of dietary and biomedical interventions . . . but how could I prove it? Who would believe me?

It was at this low ebb in my morale that I discovered Treating Autism and, to my enormous surprise and delight, a whole community of parents who had read the same books and research papers that I had read, who had reached the same conclusions that I had reached, who were trying the same interventions that I was trying. I felt as if I had come home. Now at last I could come out of the closet and talk openly to people who shared my experiences, perspective and goals. I felt a deepening sense of anger as I realised how many children, like my son, had been left to suffer, their pain ignored, their medical needs neglected. But at the same time, the fact that all these children had parents who were prepared to fight tooth and nail for them gave me hope that together we could one day make our voices heard . . . . and our views count.

Secrets, lies . . . . and biomed. Thanks to Treating Autism, I no longer feel compelled to suppress my convictions, to remain as silent and secretive as a Gormley statue. That's not to say that I intend to divulge all my erstwhile secrets to the medical professionals involved in my son's life . . . . not just yet, anyway. But I cherish the hope that one day such candour will be possible. If we parents all pull together, the day when our children's medical issues are routinely investigated and treated may come sooner than we think.

J.A. Treating Autism Team Member

Have you encountered similar obstacles in your search for help for your child? If so, you are not alone! Join Treating Autism for that elusive help, support and information.

_{Photograph of Crosby beach reproduced by permission of Andrew Dunn under the Creative Commons Attribution-Share Alike 2.0 Generic license}