Of mice and men and autistic fruit flies

Autism is a hot topic for scientists engaged in brain research. If you can link your research to autism it may help you to access additional funding that is available in the USA. In response to a determined campaign by parents and lobby groups  Congress passed the Combating Autism Act which sanctioned a substantial increase in the funds available for research into the causes of autism. At the same time the high profile pressure group Autism Speaks has, by a series of mergers and alliances, notably with Cure Autism Now! and the National Alliance for Autism Research, emerged as a leading funder of autism research.  In June it announced research grants of $15.2 million USD. Then there are private trusts like the Simons Foundation which is providing long term funding for autism research at Yale($2.5 million USD), Cold Spring Harbour, ($13.8 million USD), Michigan($2.8 million USD), MIT($7.5 million USD) and Rockefeller ($7.7 million USD).

This is serious money. One hopes that it attracts serious research. The Chapel Hill School of Medicine at the University of North Carolina is a serious research institute. According to Science Daily  they have made an important discovery that

may lead to advances in understanding autism spectrum disorders, as recently, human neurexins have been identified as a genetic risk factor for autism.

They made this important discovery while researching the role of neurexin in Drosophila, that is fruit flies to the rest of us. Drosophila are an important part of the biological research toolkit. Their relatively simple genome and rapid reproductive cycle have made them a favourite of biologists researching the mechanics of evolution. But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.

Neurexin is a basic prerequisite for  neuronal connectivity. Without it the fruit flies barely survived. Movement was severely impaired. These are primitive creatures compared to us. I would anticipate that a similar lack in humans would have far more devastating results. Autism would be the least of our worries. Never mind. The putative autism connection cannot have done any harm in obtaining funding from

• the National Institute of General Medical Sciences,
• National Institute of Neurological Disorders and Stroke
• the National Institute of Mental Health 
• the state of North Carolina.

Moving up the food chain we find a mouse study. Thanks to Mady Hornig mouse studies  of autism have received a bad press. But this one is different. Thanks again to Science Daily for telling us that

Howard Hughes Medical Institute researchers have genetically engineered mice that harbor the same genetic mutation found in some people with autism and Asperger syndrome.

The gene in question codes for for a protein called neuroligin-3.

This protein functions as a cell adhesion molecule in synapses, the junctions that connect neurons in the brain and allow them to communicate with each other. Synapses are essential to all brain activities, such as perception, behavior, memory, and thinking. Südhof said that the neuroligin-3 mutation that his team recapitulated in the mice has been identified in some people with genetic conditions known as autism spectrum disorders (ASDs). Mutations in proteins that interact with neuroligin-3 have also been detected in some people with ASDs.

Neurexin is one of these detected proteins.  (remember the fruit flies?) Is this a double whammy that damns autistic people/mice forever? Apparently not. These genetically engineered, autistic mice did rather more than “barely survive.” They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world? Never mind. In the wacky world of autism research, conformity is valued over diversity and sociability scores higher than intelligence.

But my take home message is that geek mice rule OK! [or at least they ought to]

A tale of two autisms

The Sunday Times has published a thoughtful piece on autism by Mark Henderson, entitled ‘We ask ourselves, can we separate Alex and autism?’ 

Alex is 12 years old and described as being “at the less extreme end of the autistic spectrum.” This was not always the case. He regressed when he was 14 months old, losing speech and becoming so withdrawn that nursery staff thought he was deaf. Reading his mother’s description of his early years Alex’s autism is plain to see. But he had to wait til he was 5 to get a diagnosis. Julia, his mum, would welcome improvements in genetic screening if it meant that children like Alex did not have to wait so long for a diagnosis but some of her worries chime with those raised by Dr Russell that are discussed on my previous blog.

“It took an age to get Alex the help he needed,” she said. “The earlier you know, the better, and if this could help us identify autism as young as possible it would be wonderful.

“But I would not want a situation like Down’s syndrome, where you tell parents while the child’s in the womb and you have to make a decision.

“We also ask ourselves how much of Alex’s personality is Alex, and how much is the autism. Can we even separate the two?

“If you asked us could we have prevented it, we would have to think. Obviously in some ways it would be better for him, but he is happy in himself.”

Questions like these are bound to come up more often as advances in genetic research offer the prospect of earlier diagnosis and even the possibility of prevention or cure. Whether or not these possibilities ever materialize is not the point. But they are undoubtedly powerful levers for releasing the massive funds that genetic research consumes.

[NB. research costs may be massive in relation to the biological sciences. But they are still small by comparison to the costs incurred in particle physics.  The Large Hadron Collider at Cern is costing in excess of 4 thousand million USD. Michael Wigler at Cold Springs Harbor has a budget of 14 million USD for his research programme into autism.]

The hype that surrounds genetic research is often encouraged by scientists eager to claim their portion of the research pie. This makes it even more important that journalists approach the topic dispassionately and are sensible to the dangers that Dr Russell raised in her article for Communication.

So it was a pity to read Mark Henderson’s latest offering in the Times, Hunting the gene that traps children in their own world which proclaims that

Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year.

in the space of 4 paragraphs we get the following [emphasis added]

one of the most controversial and feared medical diagnoses of modern times

but it prompted thousands of parents to agonise over the cruel condition that seems to leave children walled off in a social and emotional world of their own, apparently beyond their love.

A disorder that was once rare has become alarmingly common,

the condition retains a brutal mystery.

This is exactly the sort of language that fuels fears about autism. It suggests that research into the prevention and cure of autism is almost an obligation. Those of us who argue for autism acceptance are accused of wishing a nightmare disorder on children. But children like Alex know happiness. They are not beyond love. They have a future. Or at least they might have a future if they are seen as people who can prosper with help and understanding, rather than the victims of a brutal mystery, at best to pitied, at worst to be feared.

All this is merely the preamble to a story about some research that is not even finished yet!

Within the next year a new study is expected to identify many of the genes that underlie autism for the first time.

I am always suspicious of claims made for a study that is still in progress. This is hype. And we have heard it many times before.  My thanks to Michelle Dawson for reminding me that in February, 2004  Thomas Insel of the NIMH said this about autism in the New York Times

“My sense is that we are close to the tipping point in this illness, and that over the next couple of years we will have, not all of the genes, but many of the genes that contribute.”

Funnily enough, we are at the same tipping point three and a half years later.

The medics tell me we are at a tipping point,” said Dame Stephanie Shirley, the millionaire computer entrepreneur and philanthropist, who is the chairman of the research charity Autism Speaks and the mother of an autistic son.

My guess is that researchers always feel as though they are on the brink of a fantastic new discovery. That is what sustains them through the painstaking daily grind at the lab bench or crunching data in front of a computer screen.  But the rest of us would rather wait for the results before we get too excited.

The article ends with another quote from Dame Shirley.

“It is quite possible that in five to ten years, we will have a real understanding of this disorder,” she said. “That’s a timescale that means today’s children may be helped.”  

I am sure that Dame Shirley is already doing a lot to help her autistic son. But genetics is the science de jour. There is a popular belief that all behaviour is the product of specific brain areas that in turn are the product of the DNA code carried in our genes. Unlock the genetic code that governs our brains and we can manage our minds. We have been here before.

Once upon a time psychoanalysis was supposed to have all the answers. It gave way to behavioural science. New brain scanning technology marked the rise of cognitive neuroscience. Genetics is currently in the ascendency. Will it prove more productive than previous paradigms or do we need a new way of trying to grasp the reality of what it means to be human, maybe one that includes autism rather than trying to eliminate it? It is significant that all the genetic research so far has tried to identify genes associated with the deficits and impairments associated with autism. Nobody to my knowledge is trying to identify the genes responsible for the autistic strengths identified by researchers like Mottron and Gernsbacher.

I do not have a crystal ball. For what it is worth, in my opinion genetic research will expand our knowledge and our understanding. But it will not lead to any sort of a cure or an end to autism. Given our current level of knowledge that is probably for the best.

‘It is not a disease, it is a way of life’

 

This article is in today’s Guardian.

It provides a useful introduction to the positions of some of the supporters of autism acceptance, including myself and fellow bloggers Kev Leitch and Larry Arnold.

The article begins:

Today, an event run by and for autistic people kicks off in Somerset, the latest act of a burgeoning autism rights movement. Emine Saner reports on the campaign to celebrate difference, rather than cure it.

It contains some really good insights from the people she interviewed. For example, Gareth Nelson (pictured above) of Aspies for Freedom says:

I don’t think you should cure something that isn’t purely negative, It’s the same as black people, who seem to be more at risk of sickle cell disease than white people but you’re not going to attempt to cure ‘blackness’ to cure sickle cell.

The only unfortunate thing about the article is that it does play up the role of Aspies for Freedom (AFF) at the expense of other initiatives. I was surprised to read that:

Nelson, with his wife Amy, who also has AS, is leading the UK’s autism rights movement.

And I am not convinced that AFF has 20000 members when the discussion forum on their webite has less than 6000 members and many of those are from overseas. This is unfortunate as one of the strengths of the emergent movement for autism rights and acceptance for autistic people is that there are many voices and all are free to explore important differences as well as points of agreement. As an example, Larry Arnold and I work together within the structures of the NAS and are in broad agreement on many issues. But we differ sharply in our attitude to the role of scientific research in autism.

I would also have liked to read more about Autscape. This event is unique in Europe. It takes its inspiration from a similar event in America called Autreat. Like the AFF, Autscape began three years ago but it makes no leadership claims. Instead it aims to:

• Serve as a haven created by autistic people. An autistic space.
• Provide a venue where the majority of speakers will be autistic.
• Create possibilities within the conference for autistic people to communicate and socialise with other autistic people on their own terms.
• Educate and inform on issues arising from within the autistic community.
• Advocacy and self-advocacy.
• Promote acceptance of autistic people in their own environments.
• Enhance the lives of autistic people through empowerment, advocacy, and a nice relaxing time.

But these minor criticisms should not detract from a very valuable article in which the author shows respect for autistic people and accurately reports their views.

 

Downs but not out.

Down’s syndrome novel tugs at America’s heartstrings

Moving tale that highlights genetic condition becomes sleeper hit of the year

Paul Harris in New York
Sunday June 17, 2007
The Observer

Like many good stories, The Memory Keeper’s Daughter begins on a dark and snowy night. But, unlike most first novels from barely known authors, the book has gone on to be one of the biggest hits in recent American publishing. It has sold more than 3.5 million copies in America and is due for publication in at least 15 other countries. It has done all this despite – or perhaps because – it is about one of the most emotional and difficult situations any new parents might face: a child being born with Down’s syndrome.

According to the Observer

The book has been a huge hit among parents of Down’s children and those who work with them. They have praised its portrayal of a child leading a full life and bringing happiness to a parent.

This is all very positive but I wonder, if the writer had interviewed people with Downs, would they have praised it because it portrayed a child with Downs bringing happiness to a parent? I have always found that the joy of parenthood derives from bringing happiness to my children. Perhaps this is what the writer meant, that parents can rejoice in their children’s happiness.

Apparently many prospective parents of Downs children do not believe that their child will be happy.  Over 90 per cent of Downs fetuses that are identified by prenatal screening are aborted. The UK Downs Syndrome Association estimates that 10 in 10,000 live births are Downs. Earlier estimates, before amniocentesis became common, ranged from 15 to 24 in 10,000.

The relevance to autism

With Downs we know exactly where the genetic abnormality lies but have no idea why one of the parents produces a sperm or egg cell with an extra chromosome. We do not understand how this extra chromsome works to produce the features of Downs Syndrome and nearly 50 years after Professor LeJuene discovered the trisomy on chromosome 21 we are still a long way off being able to reverse or ameliorate its effects. All we can do is identify around a half of Downs pregnancies and offer an abortion.

A lot of money is being spent on research into genetic markers for autism. There is not just one, there are dozens of candidate genes for autism and, unlike Downs which is present from conception, there are as yet unknown environmental factors which may contribute to gene expression. Yet every discovery is trumpeted as leading to a possible cure or a genetic test to prevent autistic babies from being born.

This is damaging for a number of reasons.

1. If a cure is thought to be just a few decades away this will divert funding way from research into ways of improving outcomes for people who are already autistic.
2. To justify the huge expenditure autism has to be hyped as a health crisis that is devastating lives, when in fact it is lack of understanding and the irrational fears that this sort of hype encourages that are the biggest obstacles for many families.
3. If autism is so unremittingly awful and the genetic solution is hyped as twenty years down the line parents of newly diagnosed children are going to be vulnerable to the biomedical quackery that is already entrenched among some sections of parents.
4. Existing autistics will be viewed at best as victims and not as human beings with equal rights to acceptance and ethical treatment.

As public opinion increasingly lines up behind scientific opinion on the unfeasibility of the autism vaccine hypothesis it is important that we speak up for autism acceptance and challenge the triumphalism in those quarters of the mainstream medical and scientific research community that seek to eliminate diversity.

Blogging about Thinking

Kev just nominated me for a Thinking Blogger award.

The official rules for participation in the Thinking Blogger Awards meme are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.

Ilker Yoldas, the originator of this meme, also enjoins us to “Please, remember to tag blogs with real merits, i.e. relative content, and above all – blogs that really get you thinking!” Apart from feeling a buzz because Kev has nominated me in this category, I also feel obliged to choose carefully. This may be a bit of fun. But it is serious fun. It gives me an excuse to think about the themes that have informed this blog since its inception in November 2005.

• Debunking autism quackery and exposing its exploitation of parents’ fears.
  • This is really about exposing bad science and Ben Goldacre’s weekly BadScience column in the Guardian, also published as a blog, does this and so much more. He has taken down the Geiers, Wakefield, and their media friends like Melanie Phillips. http://www.badscience.net/
• Championing real parental concerns for their children because when these concerns are dismissed by mainstream practitioners it drives parents into the hands of the purveyors of autism quackery.
  • Sharon is one among many parents who writes honestly and thought provokingly about raising an autistic child. http://thefamilyvoyage.blogspot.com/
• Educating the professionals about the reality of autism because up to date knowledge is making existing practise redundant.
  • Michelle Dawson is a remarkable autistic adult whose collaborations with Profesor Mottron in Canada and  Professor Gernsbacher in the USA have done a lot to forward this aim. http://autismcrisis.blogspot.com
• Arguing for neurodiversity and autism acceptance because they can provide the basis for a positive intervention in the lives of of autistic people.
  • Probably http://ballastexistenz.autistics.org/ But as she may not wish to be tagged I offer The Joy of Autism as an alternative. Both challenge existing preconceptions about autism.
• Recognizing that within science there are legitimate differences and disputes. We can be on different sides while exercising mutual respect.
  • I would recommend a website but I have already exhausted my quota. Maybe next weekend I will find time to blog about this question exclusively. It does seem to me to be of the utmost importance that, as the cultish believers in anti=science sink into obsurity, we successfully engage with the intellectually valid disputes within the life sciences in which we find giants like Pinker against Rose and, if he had not died before his time from cancer, Gould against Dawkins. Arguments about genetic determinism and autopoeisis go to the heart of the disputes within the autism community about the consequences of seeking a cure versus the potential benefits of respect for the condition of autism.

Disablism and autism

April was Autism Awareness Month in the USA. Its ending coincides with Blogging Against Disablism Day, May 1st. On this day we are invited to write on any subject, specific or general, personal, social or political, anything which states an objection to the differential treatment of disabled people.

So I thought I would write about the misrepresentation of autism in the media. There was  a lot of that last month. There were attempts to link autism to the tragedy at Virginia Tech. There were misleading press reports in the UK that ABA had doubled the IQ of autistic children. I could have selected any of the media coverage of an “autism epidemic” caused by exposure to environmental toxins, vaccines. Then there are all the articles which refer to autism as “this devastating disease.”

Instead I have chosen to focus on an article that does not contain a single mention of the words disease, epidemic, vaccines, mercury or cure. On the face of it this article is on our side. The take home message is that autism is a spectrum disorder with a massive range of abilities as well as disabilities. Instead of trying to cure them we can help autistic children by adapting our behaviour to meet their needs, especially their need to be able to reliably predict what is going to happen next. Quality education delivered by professionals who understand autism is the key to success. Multi-disciplinary diagnostic teams are necessary to make sure that autism is not missed or misdiagnosed as ADHD, OCD etc.

The problem is that it is easy to spot disablist thinking in the blatantly discriminatory articles. But the effect can be just as damaging in ostensibly sympathetic articles like this. Sometimes it can be more damaging because we are so relieved to read an article that appears to be on our side that we do not notice its implicit acceptance of many of the stereotypes that we are up against.

This is what I mean.

Last year, the department’s statistics showed 1,036 autism-afflicted students on file, said Susan Constable, director of the Autism Support Center for the department

Just as gay students are not afflicted with gayness, autistic students are not afflicted with autism. It is not something external to their lives. It is integral to who they are.

“Autism is no longer a low-incidence disorder in Rhode Island or nationally,” said Constable.

No longer? This suggests that, in line with the views of advocates of an autism epidemic, autism is on the increase. But the speaker falls into the trap of equating administrative incidence with actual incidence. The truth is that we do not know if autism has increased. We do know that about the time that US school districts were told to start recording autism the diagnostic criteria were broadened and trying to compare figures then and now is like trying to compare apples with oranges.

 Statistics indicate that more children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined, according to the Autism Society of America. If diagnosis continues at this rate, the society estimates that autism could touch 4 million young people in the next decade.

The article states that the best treatment for autism is education.But it is the comparison with AIDS and cancer that will stay in the reader’s mind. The common cold is more common than AIDS, diabetes and cancer combined. But nobody ever compares the incidence of the common cold to cancer. By doing so with autism you inevitably suggest that the two are comparable qualitatively as well as quantitatively. 

Many teachers know they’ve had little or no training, but will still need to reach children with autism, Constable said.

Reach children with autism? This reflects the idea that autistic children are somehow cut off or unreachable. We return to this alien affliction of autism that stands between us and the child. So what is this training for? To understand the child and reach out to them on their own terms or to tear down the barrier of autism and rescue the child within?

These are all comon sense errors. You accept the common sense assumptions that dominate society rather than subject them to critical analysis. But once you do this you can easily slip into factual errors.

“Regressive is the type of autistic child that we are seeing really increase,” Constable said. “We know that there is a definite genetic link to autism because we see families who have two or more children with autism, but the numbers are growing too fast for this to be just genetic. There are definitely some environmental contributions that play a part in it but there have been no conclusive studies as to what those areas are.”

The erroneous assumption that an increase in  recorded cases equates to an increase in actual cases is repeated. Genetic autism is taken to mean identifiable from birth and is counterposed to regressive autism which is assumed to have an environmental cause and therefore environmental insult must account for the increase in numbers. In fact there is no evidence that regressive autism has increased. Nor is there any evidence to suggest that regressive autism is triggered by an environmental insult. There are many late onset disorders that are probably genetic in origin. Alzheimers is probably the most dramatic illustration of this.

And this is the point. Adopting faulty premises leads to faulty conclusions and the acceptance of unproven hypotheses as facts. Even the most well intentioned people can end up repeating damaging ideas as facts if they lack a theoretical framework that alerts them to this possibility.

So how did we get here? It is simple. A loud and unrepresentative minority have been capturing media attention and helping to set the agenda. It is time for a loud and representative majority to restore the balance.

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 Autistics.org, Neurodiversity.com 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.

Letter to America

LET NIMH HEAR YOUR VOICE

I have blogged about the NIMH research programme into autism before . Like most autism research it has a strong medical bias, looking for causes and cures. But if you devote most of your research budget to trying to eliminate autism what does that do for current generations of autistic people? Even assuming that the scientists do find a medical way of making autistic people normal that still leaves enormous questions.

Would it make them into better people?

Would it make them into happier people?

Would it be right to do it and should they have the right to refuse?

Who would choose for autistic children?

Because autism is so complex I suspect that it will be a long time before we have to answer those questions. What if we spent the money increasing our understanding of autism and finding ways for autistic people to get on in the world? The National Autistic Society helped to set up Research Autism in the UK precisely because there is so little decent research evaluating the interventions that are supposed to help autistic people.

And if we just see autism as a medical problem we are missing the point entirely. Some autistic  people have mental health problems. Some of them have epilepsy. Some of them have severe learning difficulties. (UK English = retardation in US English) Some of them have disturbed behaviour. So do lots of non-autistic people. It is useful to inquire into whether or not any of these problems are more common in the autistic population than in the non-autistic population. It is also important to ask why. How much depression in autistic people is caused by our lack of understanding and the media message that they are damaged, doomed individuals? But we also need to investigate the strengths and appreciate the value of autistic people, whatever their difficulties.

If you think the medical model is doing a disservice to autistic people I urge you to visit this petition, asking the NIH to rethink their views on autism research. Autism Diva has an excellent post on this subject and further advice on how concerned US citizens can make their voice heard.

VACCINE DEBATE

Coming soon in San Diego (Saturday 13 January) is a debate between David Kirby, author of Evidence of Harm and the subject of my previous blog and Arthur Allen who has written a new history of vaccines. It looks  like the meeting is going to be packed with anti-vaxers who do not think that autism is so complex – its mercury poisoning doncha know? – and do not share my concerns about imposing a cure. So checkout this flier and if you can get along there and give Arthur some backing  I am sure he will appreciate it. You can buy his book afterwards and he will sign it for you.

David Kirby is out to hunch

David Kirby, author of “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic” has finally agreed that there is no autism epidemic.

“My hunch (and yes, that is all it is) is that most of these kids do not have “autism” at all, and it’s probably time we started calling it something else.”

He calls this “something else” Environmentally-acquired Neuroimmune Disorder. And he no longer thinks that it had to be caused by mercury in vaccines. Now the mercury is gone it is being caused by

 “radical changes in our environment over the last 10-20 years. There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.”

So all the award winning journalism that went into the book, all the scientific research he quotes to support the idea of an autism epidemic caused by mercury in vaccines, all this is dismissed on the basis of a hunch. Oh, and there is the small fact that, contrary to Kirby’s prediction, autism is not going into decline now that all mandatory vaccines for children in the US are mercury free.

My hunch is different to Kirby’s. My hunch is that the people he listened to were wrong. The science he quoted was wrong. The book he wrote was wrong. And his latest response shows that he is still wrong.

He begins with an appeal for sympathy.

“I continue to be vilified by critics who insist that mercury does not cause autism, that autism is a stable genetic condition, and that it cannot be an “epidemic.””

Vilified? His ideas have been criticized. He has been presented with counter arguments. But personal vilification? I suggest he visits the Hating Autism blog to read some really vile things written by one of his supporters about autistic adults who disagree with him.

He goes on to propose a truce with the “neurodiversity” community. His quote marks suggest he does not fully accept the validity of the concept of neurodiversity. He certainly does not understand it. For he goes on to refer to the “neurodiverse” as synonymous with Asperger Syndrome. I suggest he reads my article on Neurodiversity and Kev’s excellent blog from yesterday.

The nature of the truce is this. He supports the rights of the “neurodiverse” to be respected and accepted. But he wants them to accept that they have nothing in common with the really severe autistic children he has met. 

1. I am talking about kids who begin talking and then, suddenly, never say another word.
2. I’m talking about kids who may never learn to read, write, tie their shoes or fall in love.
3. I’m talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can’t say what or where it is.
4. I’m talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of “autism” was pretty).
5. I’m talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.
6. I’m talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.
7. I’m talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don’t even realize it when their dad comes home from work.

These are the kids I want to see cured. And I don’t believe they have “autism.”

Let us go through that list.

1. This looks like regressive autism. It accounts for a minority of autistic cases but figures are hard to come by as it is not always certain whether studies are measuring it against DSM-IV autism,  or with the whole autistic spectrum.  There is a further confound because, as I argued in a much earlier blog, much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. […]“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
   (Taylor, Miller, Lingam, Andrews, Simmons & Stowe (2002) Measles, mumps, and rubella vaccination and bowel problems or developmental regression in children with autism: population study British Medical Journal, 2002, Vol. 324, pp. 393-396)
2. This describes a lot of the children I teach. Some are autistic. Some are not. And note Kirby’s use of “may never.” Hardly a reliable diagnostic criteria.
3. These children are ill and should be taken to see a doctor.
4. Ditto. It would be interesting to discover if gut problems are more prevalent in autistic children and, if so, why. But in epidemiological studies where full health checks are done on all the autistic children who are identified, they have found the same rate of gastro-intestinal problems as in non-autistic children. Kirby here seems to be equating diarrhoea with smearing. Others who have commented on Kirby’s blog have pointed out that problems with smearing are unpleasant but they pass. They make a lot of other important points as well. Please read.
5. Escape artists. They have always been with us. Take Gabriel. He is non-verbal, still not toilet trained and in residential care. And he will be 30 next year. That sort of blows away Kirby’s hunch that, “It can only be attributed to radical changes in our environment over the last 10-20 years.” Gabriel’s mum, Kate Rankin, wrote a book about him. I met her at a book signing and she is a very nice lady.
6. Harming self and others is a common problem among autistic children who get into a rage or are frustrated by our inability to understand what they mean. Teaching effective communication skills helps. Teaching non-autistics to listen and learn from autistics also helps. Even the so-called “neurodiverse” have problems with people not listening or not understanding their needs. Read Ballastexitenz‘ latest on what happens when an apparently “low functioning” member of the “neurodiverse” is disregarded on a visit to the ER.
7. He is talking about autistic kids here. And many of Kirby’s “neurodiverse” had similar childhoods. It was worse for a lot of them because they did not get a diagnosis. It was not that they were mislabeled as quirky or nerdy. They were totally misunderstood. When I was at that book signing with Kate Rankin I also met Gunilla Gerland. Her book about growing up with undiagnosed autism, A Real Person, disposes of the myth that the “neurodiverse” have an easy ride of it and have nothing in common with their more severely autistic brethren. And if they did get a diagnosis it was for a psychiatric disorder they did not have. Then they were not only mis-diagnosed. They were also mis-treated with psychiatric drugs they did not need. The kids Kirby is talking about are also being mis-treated. This time it is chelation for their non-existent mercury poisoning. Kirby’s book and its attendant publicity has doubtless led many other parents down this path. His book truly is “Evidence of Harm.”

So Kirby is trying to divide articulate and educated autistic adults from the rest of the autistic spectrum, who, on the basis of a journalistic hunch, are to be reclassified as suffering from Environmentally-acquired Neuroimmune Disorder. We do not know know what causes this, although Kirby, as  befits an altie, chelation shill, still insists that mercury is “a logical candidate.”

Kirby’s message is to be thankful for being educated and articulate and to abandon those less fortunate autistic brothers and sisters to the likes of Generation Rescue and Safe Minds. Divide and rule anybody? If Kirby expects us to accept this nonsense I have a hunch that he may be about to experience some real vilification.