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The UK’s National Autistic Society at 50: What it Must Do Next

NASBy John Stone

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.


eyes and ears

They should not be doctors, Brigit. I'm sorry for what happened to your son. Blessings to your family.

Birgit Calhoun

I meant to say "the fact that Erik did not talk..."

Birgit Calhoun

It's not the label. The label actually changed depending on who saw him. We had to complain to get a diagnosis of cerebral palsy out of his records. It was a diagnosis of convenience by the orthopedic surgeon. The fact that Erik did not gave doctors lots of opportunity to hang labels on him.

What was more striking in Erik's case was the fact that the doctors avoided looking at him. If they had to pick him out of a crowd they would not remember him because they looked at me, the parent. They did not see it necessary to do a valid check-up and did not require for him to be undressed in the examining room.

When I looked at Erik's records later, there were no valid blood pressure readings for years. His weight was not recorded most of the time. His blood pressure could not be measured because his arms were too skinny to take a good reading even with a baby sphygmomanometer. I could go on.

It was amazing what lack of bedside manner these people displayed. To me it was obvious that they did not have any intention to waste their time on Erik. This attitude got worse as Erik got older.

eyes and ears

Brigit, I am sorry for your loss, and his pain. It makes me sick to think of your son and any of these kids in pain and being neglected by doctors because of a label.... Or at least I'm assuming it was because of a label. I believe any doctor who seeks to have kids labeled without giving the kids a proper full body assessment should be sued. The label is keeping these sweet babes from real help. So sad for your story... God bless your wee man.


On the news this morning "Food allergies on the rise"


"Apparently!" these food allergies may be a result of a weakened immune system.

The question was never asked - What is the cause of a weakened immune system? That elephant in the room continues to be ignored.

At this rate our Australian Government will never take off and determine the real cause.

Elizabeth Gillespie

Birgit Calhoun

Oh, and I live near San Francisco in the United States. And I can attest to the fact that autistic people are not treated any differently here in this country.

Birgit Calhoun

Reading this I must reiterate that my son who died a year and a half ago was found to have severe bowel disease that was never treated. Erik probably was so used to the pain that he complained only with his "silent scream". The lack of treatment was not due to lack of attention. It was due to the lack of focus on that particular problem. He had constipation most of the time. He was seen by gastro-enterologists. But nothing was done to diagnose. After Erik's death the pathologist said Erik's intestines were a mess.

John Stone

Hi Simpson

There are two substantive points here: the first is that I cannot deny that the Autism Act was a valuable contribution and critical in its timing. The other is that I simply want them to go back on the gut and causation issue to where they were in principle before January 2010, which would only be consistent and reasonable.

I have no problem per se with ex military people.


PS But I'm not sure who you mean. The CEO, Mark Lever, is an accountant by background. There doesn't seem to be a high profile chairman anymore.

John Stone

eyes and ears

No, you haven't missed anything. I don't think there has been anything in open court. I suspect a lot of toing and froing behind the scenes.


eyes and ears

John, what is the news on the Wakefield trial in Texas... is it still going on... what are they doing. Did you write about it and I missed it?

Simpson Wood

John you are an intelligent man . I implore you to boycott the National Acceptance Society in every way . They are a government run interceptor of angry parents with good questions . Boycott them in every way . Abuse them , deride them . I have nothing but contempt for them . Why is their chief an ex military man ? has anyone else come across this phenomenom of finding parents of the injured up against people from the military . My conclusion is vaccines are the true weapons of mass destruction (including Gulf War syndrome). Stop being so bloody nice John . Show your anger . They stole our children and for that there must be and has to be a retribution .


John, as always, a gentleman and a scholar. These events will not be forgotten. And Bob, what a great wordsmith. Thank you both.

Bob Moffitt

John writes:

"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."

Unfortunately, it appears "big charities in the UK" have the same problems advocating against "government policies" as do big charities in the US.


In the US .. government public health bureaucracies .. continue making mistakes .. while big charities .. appear content that those mistakes WILL NOT GET CORRECTED.


NAS fund raise where does the money go perhaps they could pay for parents to take their children with a bowel condition over to America to get the treatment they need because the kids are sure as hell not getting it in the uk particularly if they suffer with inflammation

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