Good News Week

Following on from the excellent TV broadcast featuring Amanda Baggs earlier this week, two more reports have emerged that offer some counterweight to the usual litany of vaccine-damaged-autism-epidemic scare stories.

On the mercury lists parents are complaining about John Stossel’s piece on vaccines on ABC. This is a refreshing piece of journalism that has looked at the evidence and reported that vaccines are safer than the diseases they prevent and that there is no evidence that they cause autism.Fo this he is being roundly condemned on his message board. Readers may wish to go there and restore some balance.

Last week my attention was drawn to a review of Richard Lathe’s book  Autism, Brains and Environment,  in the Lancet Neurology. This book argues that we have an epidemic of ‘new phase’ autism caused by environmental toxins. I have criticized the book in an earlier blog. So has Kev Leitch. It was also roundly condemned by Mike Fitzpatrick in the British Medical Journal. So you can imagine my surprize when I discovered that the Lancet review was by Mark Geier!

The Lancet seemed just as surprized. When I emailed them I received this prompt reply.    

 Dear Mike

Many thanks for your email. The review was commissioned by a junior member of the editorial team who was unaware of Geier’s history. We are planning to publish a counterbalancing view in the next issue of the journal and have taken steps to ensure that this does not happen again.

With best wishes


Helen Frankish, PhD

Editor, The Lancet Neurology

I was not the only one who noticed. Ben Goldacre in the Guardian has written a withering account of Geier’s credentials and his quackery. It is published in the Guardian Online and in the badscience blog with the wonderful title, The transgressive medical genius that is Mark Geier. I believe this is the first time that the Geiers’activities have attracted serious newspaper attention. Let us hope that the next time it will not be a science writer, but a crime writer reporting on their transgressions.

Amanda Baggs – advocate for autism

I was going to post about the article in New Scientist on sociable computing that featured Amanda Baggs’ latest video on YouTube. Then Amanda made it onto network TV in the USA. She did a fantastic job raising autism awareness and promoting the ideas of autism acceptance and neurodiversity. Thank you Amanda.

This must have cost her a lot in terms of nervous energy and sensory overload. Thank you again, Amanda for sacrificing your time and energy and privacy. And for anyone else reading this, please show your appreciation by following these links.

Amanda’s blog [Be aware that all the media attention has been very stressful and Amanda may be taking  break for now.]

New Scientist

Amanda’s video, “In my language”

Amanda on CNN

Amanda’s guest blog on Anderson Cooper 360

And do visit Autism Diva’s commentary as well.

Rett reversal and neurodiversity

Rett Syndrome is unusual amongst autistic spectrum disorders for two reasons

  1. It is far more common in girls than in boys.
  2. We know what causes it – a mutation of the gene MECP2 on the X-chromosome.

Because it is genetic, Rett parents have not been chasing cures like some autism parents. This has made Rett syndrome a relatively quack free zone, so far. On Thursday a team of researchers led by Dr. Bird of the University of Edinburgh announced that they had successfully activated the MECP2 gene in mice using Tamoxifen and that this had led to a reversal of Rett like symptoms and an improvement in brain function. Kev and Kassiane have both blogged their concerns that the purveyors of autism quackery will try to exploit this and I share their concerns. Fortunately Dr. Bird is not only a very good scientist. He is also an able communicator. The Rett Syndrome Research Foundation have published a video of Dr. Bird talking about this research in which he says, 

Tamoxifen only works in this context because the mice have been set up to respond to it by activating the MECP2 gene. But in order to get them to do that it was necessary to alter the struture of the gene in specific ways. It would have absolutely no effect in humans.

So, why all the fuss?

Firstly, this confirms the work of Dr. Huda Zoghbi who discovered the link between MECP2 and Rett Syndrome in 1999. I find this particularly satisfying because it was Dr. Bird who discovered the MECP2 gene in 1990. More importantly it suggests that if scientists can find out how to correct the mutation in the MECP2 gene in humans it may be possible to reverse the symptoms of Rett Syndrome. Girls have two copies of the X-chromosome, one from each parent. Research suggests that most of the mutations are inherited from the father. If scientists could find a way to inactivate the chromosome carrying the mutated gene and activate the normal back up would it work like the mouse experiment? That is the hope and the expectation expressed by Dr. Bird. It is still a long way off. The paper concludes that

The experiments do not suggest an immediate therapeutic approach to RTT, but they establish the principle of reversability in a mouse model and therefore raise the possibility  that neurological defects seen in this and related human disorders are not irrevocable.

Autism Acceptance and Neurodiversity

Rett parents have long practised acceptance out of necessity and got on with the job of seeking those treatments and therapies that help their children. In the broader autism movement there have been similar arguments from necessity. Time spent seeking a non-existent cure is lost time. It is much better to get on with the job of relating to your autistic child and finding ways to help them. The quest for a normal child can impede that relationship and the child may feel your disappointment and be affected by it. The most terrible thing my son ever said to me was, “I wish I could have been the little boy you never had.” There is every possibility that non-verbal, apparently low functioning autistic children may harbour similar thoughts. So autism acceptance may be therapeutic, both for children and their caregivers

There are also arguments from diversity. These have arisen from within the autistic community, based on the concept of neurodiversity. Autism is seen, not as a defective way of being, but as a different way of being. There are autistic strengths as well as weaknesses. But science continues to see autism purely in terms of deficit. We should seek to celebrate diversity instead of trying to stifle it.

Some would go further and argue that autism is neither a medical nor a scientific phenomenon. Rather it is a social construct with a history that is open to deconstruction and reinterpretation. Larry Arnold discusses these ideas on his blog, most recently in his entry Autism, it’s not what you think, it’s how you do.  

The ideas of neurodiversity speak to a wider audience than just parents. Though parents like myself have been persuaded by their arguments. Autistic adults are campaigning over human rights, not just for themselves but on behalf of autistics who are subject to questionable treatment in schools and institutions. Clinicians and researchers are being encouraged to move away from a disease model of autism and to start from a position of respect for the autistic condition. Autism organizations are being asked to take account of the opinions of autistic people and to include autistic people in their governing bodies. The National Autistic Society has made great strides in this respect. The page on their website entitled “Is there a cure?” begins with this quote from Joshua Muggleton, an autisic teen.

 “We are not born to suffer. We are born to thrive. If you live in a dry area and your garden receives little water, you plant plants which like dry soil. But when you are given a plant that likes wet soil, you don’t kill it, you water it, you spend one of your 1440 minutes each day watering that plant. Because you know, that given the right care, that little bit of effort can produce spectacular blooms. And so it should be with children like us.”

The page ends like this.

Although this page has been written primarily for the parents of newly-diagnosed children, it may be helpful to note the viewpoints of some adults with autistic spectrum disorders. There is a growing movement amongst autism activists who don’t think in terms of ‘curing’ a ‘disorder’ but instead of celebrating difference. Please take time to read their viewpoints below.

It then links to stories about the Autistic Liberation Front, to, and Don’t Mourn For Us.  Whenever I get impatient with how slowly the NAS is moving I return to that page before turning to Michelle Dawson’s blog that documents the uphill battle with Canadian autism advocates who see normalization as the only option for all autistics whether they want it or not.

Is our position under threat?

Now that there is a real possibility of a cure for Rett Syndrome some time in the future, will it undermine the movement for autism acceptance and encourage those whose aim is normalization? Some will certainly see it that way. But in the short to medium term I predict that it will increase the tension between organizations like Autism Speaks that are funding research into genetic causes for autism and those like NAA and Safe Minds who think they already know the cause and the cure and are only interested in research that confirms their prejudices. 

Neurodiversity has  nothing to fear from sound research like Dr Bird’s. It helps to clarify our understanding of autism and adds to our understanding of neurology. Rett itself is a spectrum condition. Kerr et al  have identified both strengths and weaknesses in Rett Syndrome and discuss the complexity of the symptom mix. Rett Syndrome has always seemed a very atypical pervasive developmental disorder. Whereas most PDDs are diagnosed on the basis of behaviour, Rett has distinct physical symptoms. These can be very distressing and potentially life threatening. I see no contradiction between wanting to relieve those symptoms and valuing diversity.

Part of the problem is that a lot of our thinking about neurodiversity has been shaped by our opposition to those who have sought to demonize autism and to eradicate it by any means necessary. Autism Diva has compared their position with the more positive attitude of Rett parents prior to Dr Bird’s research.  And now there is hope for a possible cure they are not crying out to Cure Rett’s Now! In a video of parental responses one father expressed a hope that he might hear his daughter speak before he died, even if he had to wait until he was eighty.

Dr. Bird’s research raises important questions about getting the balance right when discussing treatments and cures in the context of respect for neurodiversity. It is a challenge, not a threat, and one that I welcome.

Questions for Dr. Anju Usman

Treating Autism is hosting the two day Autism-Biomedical Conference at the Bournemouth International Centre with funding from the National Lottery this weekend. (Friday 9th  and Saturday 10th February)

Regular readers of this blog will not be surprised to learn that I have misgivings about this. Basically the DAN! protocol is being promoted in a big way in England for the first time. This follows on from the success of Action Against Autism in setting up a DAN! clinic in Scotland under the leadership of Lorene Amet following their biomed conference in Edinburgh in October 2005.

I have three major objections to DAN!

  1. They accept as fact that there is an epidemic of autism caused by environmental toxins.
  2. They claim that by using chelation to remove these toxins children can be recovered from autism.
  3. Any charlatan or quack can become a DAN! practitioner merely by doing an eight hour training session at one of their conferences. Children have been sexually abused, injured and killed by DAN! practitioners whose details are still up on the DAN! website with no warnings about their professional misconduct.

I am particularly surprised that Anju Usman is such a prominent speaker at this conference.  Dr Usman was the DAN! practitioner treating Abu Bakar Tariq Nadama after his mother took him from Britain to America seeking  a cure for his autism.  Dr Usman referred him on to Dr Kerry. Tariq subsequently died as a result of the treatment prescribed by Kerry. According to Kerry’s case notes, published by the Pennsylvania State Medical Board as part of their case against him,

“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.

Later on  Pennsylvania State Medical Board reports that Usman actually recommended calcium disodium EDTA.

43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.

There are two forms of EDTA. Disodium EDTA is used for the emergency treatment of hypercalcemia and in control of ventricular arrhythmias associated with digitalis toxicity.  Tariq did not have either of these illnesses. Calcium disodium EDTA can be used to treat aluminum poisoning but is more commonly used for lead poisoning. The calcium is added because disodium EDTA on its own also binds to calcium. Tariq died because the disodium EDTA depleted his body levels of calcium to such an extent that his heart stopped.

The Pennsylvania State Medical Board also notes that Tariq had low levels of iron. And Usman had referred Tariq to Kerry because of high aluminum levels. Deferoxamine is often used to treat aluminum poisoning. It also binds to iron. If Usman was using that to treat Tariq it would explain his low levels of iron. It does not explain why she sent him to Kerry, a doctor who never ever used calcium disodium EDTA. He only ever used disodium EDTA

Even if I was a true believer in biomedical cures for autism, before I ever invited Dr Usman onto a conference platform, I would want to know

  1. Did she use Deferoxamine on Tariq? Was she monitoring his iron levels? 
  2. Did she specify CALCIUM disodium EDTA to Kerry when she referred Tariq?
  3. If so, would he not have told her that he never used it and did not have it in stock?
  4. Did she understand at the time how different the two forms of EDTA are? 
  5. Did she object when Kerry was granted DAN! status AFTER he killed Tariq?

We know that Kerry is unfit to practise medicine. Until questions about her role in the death of Tariq are settled there are serious doubts about Dr Usman. Will she answer these questions in Bournemouth? Will they even be asked? for Tariq’s sake, and for the sake of all the potential Tariqs, I hope so.