On Thursday I had a curious telephone call. A voice I recognised as a fund raiser for the National Autistic Society explained that the society was celebrating its 50th birthday and they were ringing people who had contributed to the autism community to thank them for everything they have done. I suppose in my case this was attempting to do everything they were not , although whether this was the reason for the call or more my lapsed subscription is a matter of speculation: at any rate I was not invited to SamCam’s party for the society at No 10. For me this occurrence had a melancholy quality. I do not feel quite the same way about the society as I do about Autism Speaks (which seems to me a completely rapacious organisation). Indeed, these days I feel more sad than angry, though oddly in the years when I felt angry I was still giving them a subscription.
So, I would like to begin by paying tribute to the NAS for its genuine political achievement of the last decade, the Autism Act of 2009 which has done something in the nick of time to protect the many thousands of young adults, including my own son, who are now pouring out of the school system. To accommodate this new reality there had apparently to be maintained the official line that autism had always existed in the population at similar levels, and this for the last 12 years – since I started to try and draw attention to the rise in autism - has been the source of a certain bitterness. But it is also evident, as officers of the society have explained to me in so many words at different times, that the society’s advocacy of autism issues is limited by government policy. This perhaps is ‘realpolitik’. There certainly was a time when the big charities in the UK were prepared to stand up against government, but these days they are more like QANGOs, lobby organisations which may press the needs of their communities, but only within a politically safe line.
To my mind there is one honourable thing that the society needs to do to protect the welfare of the autistic community and this is to acknowledge once again that autistic people often need help with gastro-intestinal problems. Prior to the hearing against Wakefield and colleagues the society had the great wisdom to put out a statement (which I am sure was not widely heeded):
“The National Autistic Society (NAS) is keenly aware of the concerns of parents surrounding suggested links between autism and the MMR vaccine. The charity is concerned that the GMC hearing, and surrounding media coverage, will create further confusion and make it even more difficult for parents to access appropriate medical advice for their children.
“It is particularly important that this case is not allowed to increase the lack of sympathy that some parents of children with autism have encountered from health professionals, particularly on suspected gut and bowel problems. Parents have reported to the NAS that in some cases their concerns have been dismissed as hysteria following previous publicity around the MMR vaccine. It is crucial that health professionals listen to parents' concerns and respect their views as the experts on their individual children.
“There is an urgent need for further, authoritative research into the causes of autism, to improve our understanding of the condition, to respond to parents' concerns and to enable us to ensure that there are appropriate services and support in place to meet people's needs.” (See NAS Here)
Unfortunately, following the findings of the GMC and the fiction that the doctors manufactured and wrongly investigated the symptoms of the children in the Lancet paper this statement only lies on the scrapheap of the web-archive. And this is the case even now that the High Court has thoroughly dismissed these findings . Today, many autistic people in the United Kingdom struggle to get the medical help they need, doctors remain frightened to treat them after the Wakefield witch-hunt, and they have been effectively abandoned by the NAS as well. Moreover, this negligence towards those it is supposed to protect flies in the face of much research subsequent to the 1998 Wakefield paper.
Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report.
Urinary metabolic phenotyping differentiates children with autism from their unaffected siblings and age-matched controls.
Impaired carbohydrate digestion and transport and mucosal dysbiosis in the intestines of children with autism and gastrointestinal disturbances.
It is now essential that the society reviews its policy and restores the status quo ante. It is a small matter, but if they do I will renew my subscription and I won’t even be angry.
John Stone is UK Editor for Age of Autism.