The Independent today published a letter signed by leading members of Treating Autism, [TA] a UK charity which believes that autism is treatable using the biomedical methods championed by Defeat Autism Now! Their main complaint against the National Autistic Society’s Think Differently Campaign is that it paints too rosy a picture of autism, ignores the suffering of their children and refuses to acknowledge that autism is treatable using the aforementioned biomedical methods. Here is the letter in full, interspersed with my comments
We, parents of autistic children, wish to repudiate the National Autistic Society and its claim to speak for us and our autistic children. In particular, we demand the withdrawal of the latest leaflet (“Think Differently about Autism”) calling for public understanding of autism, complete with a website of supportive celebs.
Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research pouring out of the United States. A model of autism as a genetic predisposition combined with precipitating environmental damages is being developed in the US, with new discoveries almost weekly. These developments offer real hope for those affected by autism.
The leaflet does not pretend that autistic people are normal. What is normal about the words on the front of the leaflet, “He gave you lovely hugs but then he’d bite you.” ? The autism model emerging in the United States is just a hypothesis. Nobody disputes the truism that autism results from a combination of genetic and environmental factors. But I am unaware of any “environmental damages” that have been reliably identified in the scientific literature.
What is the contribution of the NAS at this exciting time? The only contribution is a leaflet with pictures of people who “choose not to speak” and a plea for public understanding. The public should know that the NAS is riven with feuding between those who believe autism is “normal” and those who believe it is a disability which should be treated.
Actually the leaflet pictures one young adult who “prefers not to speak.” I am certain that the NAS would not have used those words without checking first with the young man in question and his family.
The NAS reflects the diversity of opinion that exists within the world of autism and we have some vigorous debates. But they are conducted with mutual respect by people who continue to work together for the greater good of all autistic people and their families. That is why the NAS has experienced 20 per cent growth this year. Not what you’d expect from an organization “riven with feuding.”
One of our number signed this letter en route to a conference run by the National Autistic Association of America whose speakers include a representative from the US-government National Institute of Health speaking on the part played by the environment in the autism epidemic. Only an ocean but a world away from the patronising claptrap put out by the National Autistic Society of the UK.
This is potentially misleading. Thomas Insel of the NIH is speaking at the NAA conference. But he is not a member of NAA and it is unlikely that he is going there to endorse the NAA opinion that there is an autism epidemic caused by the mercury content of vaccines, which can be cured by chelation.
The NAS has a research arm called Research Autism. It has a website. None of this US research gets a mention. People with autism are sometimes said jokingly to be on another planet. It must be the one where the NAS is a well-informed, authoritative campaigning organisation and a powerful voice for change.
Research Autism has been established with NAS support but is independent of the NAS. It seeks to promote evidence based research on the efficacy of interventions for autism. If the US research is not mentioned it is because it does not satisfy Research Autism’s criteria for inclusion.
Autistic people sometimes refer to themselves as coming from another planet and they are not joking. They are made to feel like aliens by the lack of understanding and acceptance that they encounter on a daily basis. If the Think Differently campaign helps to change that, both it and the NAS will have nothing to be ashamed of.
“But I am unaware of any “environmental damages” that have been reliably identified in the scientific literature”.
Actually there several environmentally induced etiologies which have been accepted by even the most rigid polygenic theorists.
Thalidomide, Fetal Alcohol Syndrome, Rubella, Valproate Acid, anti-convulsants have all been identified as a caustive component and published in peer reviewed medical journals.
The link between Thalidomide and FAS were originally published by Professor Christopher Gillberg, widely recognized as one of the leading autism researchers
Here is my reply to the independent.
The Independent today published a letter that criticized the National Autistic Society’s “Think differently About Autism” campaign because it paints too rosy a picture of autism and and refuses to acknowledge that autism is treatable using biomedical methods like chelation and special diets.
What is rosy about the words on the front of the leaflet, “He gave you lovely hugs but then he’d bite you.”? The NAS would not exist if autism did not create huge problems for autistic people and their families. But the other side of the coin is that public misconceptions about autism also create huge difficulties. The campaign tries to correct those misconceptions.
Treating Autism’s claims for biomedical causation and interventions have yet to meet scientifically acceptable standards of proof and it would be irresponsible for the NAS to endorse them. Anyway, the Think Differently campaign is not about causation. It is about challenging public misunderstanding of autism and highlighting the needs of autistic adults who struggle to get by with inadequate services and support.
Furness and South Cumbria NAS
but these are quite specific triggers for narrow bands of autism. TA, NAA and the rest argue that the generality of autism is explicable by a combination of MMR and thimerosal containing vaccines that either overwhelm the immune system or compromise the gut/blood/brain barriers or both.
And I have always found it strange that with rubella a known cause of autism, anti vaccine campaigners have focused on the measles component and not the rubella component of the MMR.
As I read it, implicit in the section stating “no knowledge of environmental ‘damages'”, was that it meant post-birth.
And Insel is not a featured speaker—not as much as Jenny McCarthy, David Kirby, and the usual suspects.
Dr Insel, who promotes the autism “epidemic,” is a featured speaker, alongside David Kirby et al., as is Sam Wilson, the acting director of another NIH institute (NIEHS).
Here’s the list of speakers, not including the break-out speakers:
SPECIAL GUEST SPEAKER
Julie A. Buckley, MD, FAAP
Jeffrey Bradstreet, MD, FAAFP
Steven E Gutstein, PhD
Thomas Insel, MD
Jerry Kartzinel, MD
Arthur Krigsman, MD
Anju Usman, MD
Andrew J Wakefield, MD
Sam Wilson, MD
Mike you wrote:
“Nobody disputes the truism that autism results from a combination of genetic and environmental factors.”
I think that the position of the NAS less than 6 years ago, when my son was diagnosed, was to ignore totally environmental factors as being any part of the equation. Simon Baron-Cohen, Head of the Autism Research Centre in Cambridge has also only comparatively recently begun to mention environmental factors possibly being involved in the causation of autism. At the time of my son’s diagnosis all I got from the NAS, the ARC and the local NHS was “Go home and accept it. It’s genetic. All you can do it adapt your house and your life. You can’t do much for your child.”
I think, Mike, there is a real problem with the NAS, which uses the slogan “Your Autism Charity”. Sorry, it doesn’t feel like mine. When I saw the offending leaflet I too saw red and promptly binned the thing. The NAS chose to use an image with the caption “X chooses not to speak.” For heaven’s sake! It would be nice if our children all had the choice to speak. A lot of them don’t. NHS speech therapy is very thin on the ground and I’ve come across more than one practitioner who takes the blanket view “there’s nothing to be done”, and so why bother.
As for the mention of the child on the leaflet who would bite without warning: this is a terrible example. Why do they bite: frustration? inability to speak? lack of an alternative means of communication? sensory overload? gut pain? headache? other pain? The person with autism who bites might well stop biting if their health and educational needs were met by the NHS, the Education system and the use of biomedical approaches. Acceptance can just mean give up and don’t try to work out what’s wrong and what might be changed for the better.
I forgot to mention that two people to whom I showed the offending leaflet said, independently of each other, that saying a person with autism chooses not to speak was like saying a blind person chooses not to see.
Yes, I know you will say the person in the leaflet may actually hold this position, but the point is that the NAS chose to use this image and this specific caption as an exemplar to represent many other people with autism including the many who are unable to speak.
I find it interesting that these folks who are claiming there is no need for celebrities to support the cause are touting a conference with celebrity speakers. After all, who are these folks with no medical designations behind their names on the list Michelle has posted?
I suspect that the reason the measles component of the MMR became the “scapegoat” for autism has to do with Andy Wakefield. He had been trying for many years to pin ulcerative colitis and/or Crohn’s Disease on the measles virus (the vaccine strain, of course).
When he had his “conversion experience” (i.e. he saw that the parents of children with autism were more desparate to believe his stories than the people with ulcerative colitis and Crohn’s Disease), he simply changed the disease that was allegedly caused by the vaccine without apparently any regard for what had been known about rubella.
It looks more and more like the measles vaccine has long been an idee fixe with Dr. Wakefield and that autism is simply the latest target of his obsession.
Just as the Geiers had long tried to associate thimerosal with heart disease before they “saw the light” and blamed thimerosal for autism.
Please click onto the link
and read the truth about the GMC and Dr. Wakefield.
I can understand some parents frustrations about this, but I think the whole idea of The Think Differently Campaign is great.
Listen, the point of this group is not the how my sons got autism, but rather, influencing a society to accept their differences.
I am of the school of thought that my boys will be in a “regular” classroom. They will play sports, join cub scouts and have the opportunties that every other child has, and I will not allow them to shove them off into some nether world so that the rest of soceity doesn’t have to acknowledge them.
Currently, I am lucky in that everyone has been very supportive and this in turn has helped my boys achieve things that some might have thought impossible, but I know one day there will be that parent or person that will let their ignorance shine.
Such a campaign will help people learn and be supportive of families, their challenges and their dreams. Maybe through such a campaign there will also come monetary support, to help families with supports and therapies.
Maybe everything in this pamphlet isn’t perfect, but it is a start.
I have been reading you blog for around a year and cannot believe that you like this campaign leaflet or its website. with its negative language,it reinforces stereo types it exploits those it features. I would not want any person or professional caring for my child to see this material.
If it were the work of treating autism you would be jumping up and down with anger.
Stop sitting on the fence Mike and say what you really think.
Larry has been honest enough to do so.
regarding the recognition of environmental factors in autism, in the book Autism the Facts by Dr Simon Baron-Cohen and Dr Patrick Bolton, (Oxford University Press 1993) I read that,
“Modern medical evidence suggests clear biological causes for autism, and this has meant that parents no longer need to blame themselves. The suggested biological causes include geneticfactors, viral infections and birth or pregnancy complications.”[page 10]
My copy was printed in 1996 and carries an endorsement from the NAS. The NAS handbook of 1999 states,
“The exact cause of autistic spectrum disorders is still not known but research shows that genetic factors are important. In some cases, autistic spectrum disorders may also be associated with conditions affecting brain development, such as maternal rubella, tuberous sclerosis and encephalitis.” [page 31]
This contradicts your impression that “the position of the NAS less than 6 years ago […] was to ignore totally environmental factors.”
The same Autism Handbook also states that,
“An autistic spectrum disorder is a lifelong disability and there is at present no one effective treatment that appears to work for everyone. However the situation is not as bleak as this must, at first, appear.Given appropriate intervention early in life, specialised education and structuredsupport can really make a difference to a child’s life, helping to maximise their skills and achieve their full potential as adults.” [page 35]
If an employee of the NAS told you, “You can’t do much for your child,” they were going against everything that the NAS stands for.
Regarding Sean Mason, if you had not binned your copy of the leaflet you might have noticed that it actually reads that Sean, “prefers not to speak.” That is not quite the same as “choosing.” The latter implies that Sean could make either choice with equal facility. This is the interpretation that has outraged parents of non-verbal children.
Another interpretation is that Sean has good reasons for preferring non-verbal methods of communication. When I read it, I thought of adults who can talk but are able to communicate better when they type. If the leaflet had read that Sean preferred to type, sign, use symbols, etc. rather than speak it would have forestalled that particular objection. I also made what may be a naive assumption, that if the NAS cites Sean as saying he prefers not to speak, it is because that is what he told them. I cannot agree with you that the NAS used Sean as an exemplar for autistic people who cannot speak. He is an example. I dare say that in the months ahead we will meet many other varied examples of autistic people in a campaign, the whole point of which is to make people question their pe-existing stereotypical ideas about autism.
You jump to conclusions with Sean, but when it comes to the child who bites, you object because others might jump to conclusions. Your sympathies lie with the child and you want to understand his behaviour in order to intervene to make his life easier. You say that acceptance is the same as giving up. I disagree. Acceptance and intervention go hand in hand. It is just the nature of the intervention that changes.
the impressions of the GMC and Wakefield on your website are clearly partisan. In the absence of published transcripts I prefer to wait to read the judgement when it comes out. But there are two issues here. The GMC is judging Wakefield on his ethical conduct. Whatever their decision the scientific judgement on his work is already out. No independent studies have supported his theory and the published work has been shown to be based on flawed lab results.
I am sorry your original comment fell into my spam trap. I do not think this campaign is perfect but it is far superior to the Defeat Autism Now! rhetoric that dominates the Autism Society of America or the belief of the Canadian autistic societies that ABA should be a mandatory medical treatment in order to normalize the behaviour of all autistics.
The NAS is grappling with diversity and acceptance in ways that are virtually unknown within the professional and parent led autism organizations throughout the world.
If you have specific objections to the content of the campaign please share them, either here, or directly to the NAS.