Scientific rigour, respect and responsibility and autism

I nominate this for the annual “Teaching Granny to Suck Eggs award.”

Rigour, respect and responsibility: A universal ethical code for scientists

Rigour, honesty and integrity

Act with skill and care in all scientific work. Maintain up to date skills and assist their development
in others.
Take steps to prevent corrupt practices and professional misconduct. Declare conflicts of interest.
Be alert to the ways in which research derives from and affects the work of other people, and
respect the rights and reputations of others.

Respect for life, the law and the public good

Ensure that your work is lawful and justified.
Minimise and justify any adverse effect your work may have on people, animals and the natural
environment.

Responsible communication: listening and informing

Seek to discuss the issues that science raises for society. Listen to the aspirations and concerns of
others.
Do not knowingly mislead, or allow others to be misled, about scientific matters. Present and
review scientific evidence, theory or interpretation honestly and accurately.

This piece of guff is published by the British Government. Scientists are supposed to sign up to this in order to restore public confidence in science. Chief scientific advisor to the government, Sir David King has been promoting the code in a series of articles in the Guardian. To be honest, if I was a scientist my first reaction would be to feel insulted by such patronising nonsense. My second reaction would be profound disappointment.

This is our government’s response to growing public mistrust in science. There is a common perception that scientists have sold themselves to the big corporations and to government. So the government response is to ask to scientists to promise not to do all the things that they are wrongly accused of. It is akin to the no win situation where a man is asked, “When did you stop beating your wife.” Scientists are assumed to have a case to answer.  The onus is on them to reassure the public by signing up to a code which can be summed up as, “I promise to be good from now on.”

It would be a lot better to actively defend science and point to the undoubted benefits it has brought. My favourite website at the moment is Sense About Science. This is not a government department. It is a charitable trust.

Sense About Science is an independent charitable trust promoting good science and evidence in public debates. We do this by promoting respect for evidence and by urging scientists to engage actively with a wide range of groups, particularly when debates are controversial or difficult.

If the government really wants to raise scientific awareness and understanding it could do worse than reprint this year’s annual lecture from Sense About Science, a spirited defense of science by Professor Richard Tallis, and post a copy to every household in the country.

Meanwhile, the people who really ought to sign up to the government’s ethical pledge are the same quacks and alternative practitioners who are cashing in on the public mistrust of real science and selling them pseudo-science. As Professor Tallis puts it, the problem is

why scientific expertise and science itself is regarded with suspicion; and why nonsense about science and nonsense passing itself off as science seems to be having such an easy time of it.

So let us apply the government’s ethical code not to science, but to those who are selling alternatives to science like ARI/DAN! the Autism Treatment Trust and the rest of the alternative autism treatment industry. How would they cope with this?

Scientists and institutions are encouraged to reflect on and debate how these guidelines may relate to
their own work. For example, acting with rigour, honesty and integrity may include: not committing
plagiarism or condoning acts of plagiarism by others; ensuring that work is peer reviewed before it is
disseminated; reviewing the work of others fairly; ensuring that primary data that may be needed to
allow others to audit, repeat or build on work, are secured and stored. Similarly, in communicating
responsibly, scientists need to make clear the assumptions, qualifications or caveats underpinning their
arguments.

For some intelligent, exciting writing about science and autism please visit these blogs:

http://autismdiva.blogspot.com/2007/03/down-time-or-what-red-queen-needs.html

http://photoninthedarkness.blogspot.com/2007/03/tale-of-two-studies.html

http://photoninthedarkness.blogspot.com/2007/03/tale-of-two-studies-part-second.html

http://www.autismstreet.org/weblog/?p=108

Language, culture and autism

Mike Danatos left this interesting comment on one of my pages. I decided to blog it because it deserves a wider circulation.

I am currently a Grad Student in an ABA program at Rutgers University. I am interested in pursuing doctoral research on autism. My review of the current understanding of autism depicts a clearly Anglo-centric view derived from research and interventions that have historically been based in either the United States or Western Europe.

Two of the DSM-IV criteria (social, language) are likely to evidence significant variability in the non-Anglo world. Uta Frith reports in her research that it is not surprising that children with autism “confuse deictic terms and even personal pronouns.” Does this observation apply only to children whose ‘natural’ language is English? Does the confusion change with an arguably more complex language such as Portuguese?

A genetic study of autism in Costa Rica reported that one of the major hurdles to overcome was that the standard research instruments (ADI-R, and ADOS) were only available in English and were unlikely to be translated by the intellectual property owners because of a perceived lack of market to repay their investment. A similar problem exists for IQ tests where no norms exist for Latin American countries.

An unprecedented amount of money has been spent in the last decade on Anglo-centric autism research including more than $100 million in 2006. A new study to understand autism in the non-Anglo world has recently begun yet the research is limited to countries on the Asian continent. There is currently a dearth of research on autism from a Latin American perspective and this is a huge gap in knowledge.

The importance of this gap can be brought into clearer focus by consideration of the tens of billions of dollars that are spent in the US annually on ‘special education’, the increasing proportion of students from Hispanic origins in the public school system and the unfortunate prevalence of significant misdiagnosis of special education needs of minority students.

I would be very interested in hearing thoughts, opinions, diatribes, etc on this issue.

So would I.  Is there any research into how different mother tongues might affect the presentation of the language difficulties in autism? As an example, I do not know if such a language exists, but you could not have pronoun reversal in a language that had no personal pronouns.Social and cultural aspects of autism including, but not restricted to language differences, are potentially as important as the genetic and medical aspects that get most of the attention. Roy Grinker, in his new book, Unstrange Minds, looks at autism as a world wide phenomena and includes an extensive section on Korea, where Reactive Affective Disorder, which is essentially blamed on bad parenting, is actually preferred as a diagnosis over autism. An interview with the Guardian reported that,

In such a setting, reactive attachment disorder is a popular diagnosis, Grinker believes, because the condition simply blames the mother: That’s the more culturally appropriate diagnosis, you see, because it means there’s just this one person – the mother – who’s to blame.”

The alternative, to admit to a genetic element, would bring shame on all the family. This may be a factor affecting the perception of autism in other communities were family traditions are strong and women traditionally have a subordinate role. This excerpt from Roy Grinker’s website shows how serious the problem is. And also how things are changing for he better.

Milal School. This is a wonderful school for children with autism called Milal School in an area of Seoul called Ilwon-dong. For me, it is a symbol of how things are changing for the better in Korea. When it was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism. Today, the Milal school is a jewel in the Ilwon-dong neighborhood where hundreds of neighbors volunteer. The architect was given an award for the building. And the gym is used for community events, such as concerts and church services. In the afternoon, when school lets out, families come by to pick up their children and sometimes take a leisurely walk in the neighborhood, for all to see. 

Cultural differences may be a factor in other aspects of autism research. When I attended the NAS International Conference in London two years ago a delegate from South Africa pointed out that nearly all of the genetic research was based on North American and European data with virtually no input from the southern hemisphere.

More recently, supporters of the link between vaccines and autism have tried to cast doubts on the validity of research by Eric Fombonne that demonstrated no connection between MMR and autism. They did this because he combined data on autism from anglophone districts of Canada with data on vaccines from francophone districts. There is a full discussion of the critique of Fombonne’s study at Interverbal; Reviews of Autism Statements and Research.

While it is extremely unlikely that language differences affect reactions to the MMR vaccine could cultural differences impact upon the diagnosis levels in francophone and anglophone parts of Canada? This is not an idle question. Autisme Europe won a case against France before the European Commitee of Social Rights in Strasbourg, in part because the cultural dominance of psychodynamic theory in France was instrumental in denying French autistic children an appropriate education. Could such a bias affect francophone communities around the world? It is worth noting that Fombonne is a French psychiatrist who does not adhere to psychodynamic theories of autism.

So, thank you, Michael Danatos. Your question raises all sorts of interesting possibilities.

Reasons to be cheerful

AUTISM IN CANADA 

Regular readers of Michelle Dawson’s blog [and, if you are not a regular reader, I commend it to you] will be aware that the major autism societies in Canada are fervent believers in the ability of intensive behavioural intervention, by which the mean the applied behaviour analysis of Ivor Lovaas,  to normalize the behaviour of autistic children. They are persistent in their attempts to make such treatment mandatory for all autistic children and are not above using misinformation to win their case.  

These self appointed ‘autism advocates’ argue that unless autistic children receive IBI/ABA in the early years they will be unable to learn and will face a lifetime of institutional care. Like the mercury malicia in the USA they sieze upon headline figures for autism prevalence and suggest that all of these are victims of an epidemic that robs children of their humanity and condemns them to live out a worthless existence unless they can be recovered. They ignore the existence of Canada’s autistic adults and when adults like Michelle Dawson challenge them and speak out for recognition and acceptance, she is vilified.

So I was pleased to read today of this research project in Canada

Researchers from the University of Calgary, University of Manitoba and University of Saskatchewan are looking to shed some light on the often-misunderstood world of autism.The group of professors and students from the division of applied psychology are conducting a study that focuses on 100 youth aged 17-21 diagnosed with high-functioning autism, or Asperger’s syndrome. The study is designed to look at the under-studied adolescent demographic and assess the positive aspects of these points in the autism spectrum.

Positive aspects of autism? what will Canada’s ‘autism advocates’ have to say about that? When they publish their results,

the team hopes to dispel some of the stereotypes in mainstream media and pop culture.

Many of these stereotypes are being reinforced all the time by the propaganda coming from the mainstream autism societies. It is good to see that while they may be setting the political agenda regarding autism in Canada, there is still an independent tradition of enquiry amongst Canadian academe.

THE AUTISM ACCEPTANCE PROJECT

This is as good a time as any to remind people of The Autism Acceptance Project, [TAAP] which is also based in Canada. The website has just had a makeover and carries the inspiring title, “Tapping into Human Potential and Dignity.” and remember to add TAAP founder Estee Klar Wolfond’s blog to your feed along with Michelle Dawson’s.

6th INTERNATIONAL MEETING FOR AUTISM RESEARCH [IMFAR]  

Michelle Dawson is not only a campaigner for the rights of autistic people. She is also a researcher and will feature at IMFAR this year with one oral and two poster presentations. You can read the abstracts on Michelle’s blog:

THE AUTISM AWARENESS CENTRE

I know very little about Maureen Bennie, except that she is the driving force behind the Autism Awareness Centre,

Canada’s National Provider of ASD Conferences

Leading the Way for Change!

She is also a parent of two autistic children and is running home programmes of Intensive Behavioural Intervention with both of them. I checked out the website because I am going to one of their conferences in the UK this year. I was pleasantly surprised. Maureen reviews a lot of books on the website and has some positive things to say about autism.

How To Understand Autism the Easy Way requires a beginning-to-end read because all of the chapters hinge on the first chapter’s explanation of social and computer thinking. The author does a beautiful job of explaining what it is like to autistic through the concept of social and computer thinking. The writing resonates respect and a positive outlook on this disorder. It is clear that Alex Durig feels a sense of awe about these individuals. The reader will feel this awe and develop a new awareness of autistic perception not explored in other books. [How to Understand Autism – The Easy Way by Alex Durig]

Norm Ledgin successfully puts to rest the negative connotations an Asperger’s diagnosis usually has. He’s devoted his literary energy into seeing the positive aspects of Asperger’s Syndrome. Society generally looks upon people with different or unusual traits as abnormal, but Ledgin sees the Asperger’s traits as great gifts. He uses famous role models to emphasize the point of what these unusual traits have contributed to society and have made us richer for it. [Asperger’s and Self-Esteem: Insight and Hope by Norm Ledgin]

Readers can empathize and smile at the joys of life this young man has experienced in his short lifetime. You will realize autism does not have to be a deficit but a different way in which to view the world. [The Mind Tree by Tito Rajarshi Mukhopadhyay ]

I have no wish to minimize the serious problems that advocates for autism acceptance and understanding face in Canada. But, as Ian Dury reminds us, there are reasons to be cheerful.

When Friends Fall Out

A few weeks ago in my post on Rett Reversal and Neurodiversity I wrote

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. 

Well, it has happened. J. B. Handley, the driving force behind Generation Rescue and Put Children First, is circulating a letter entitled Bernie versus Bryna: The Trouble with Autism Speaks 

Bernie refers to Bernard Rimland, the recently deceased founder of the Autism Research Institute [ARI] and Defeat Autism Now! [DAN] Rimland has done more than anyone to promote the idea that autism can be treated with alternative therapies like megadoses of vitamns, special diets and chelation for heavy metal poisoning. Bryna refers to Bryna Siegel who wrote The World of the Autistic Child and is very much in the autism mainstream.  Handley is upset because Autism Speaks is sponsoring a conference hosted by Jump Start in San Francisco this Friday [March 9th] at which Siegel is the keynote speaker. This is why.

Bryna Siegel diagnosed my son. My son was the first client of “JumpStart” when it was still a part of UCSF and just in its infancy. Bryna Siegel told us that the GFCF diet was a “placebo for parents.” She has testified in court for vaccine manufacturers to ward of Thimerosal lawsuits (something she does not disclose to you while telling you the vaccine-autism link has been disproven.) She thinks the Danish studies thoroughly refute the Thimerosal-autism hypothesis. She told us our son had no “theory of mind” and that he’d probably never talk.

A parent who attends this workshop and asks a question about biomedical treatment will be told by an “expert” that biomedical treatment does not work. I should know, that’s what she said to me and my wife.

And, that’s my point about Autism Speaks: way too much Bryna and not enough Bernie.

Handley believes that there is an autism epidemic caused by mercury in vaccines. He believes in special diets, supplements and chelation therapy. He is using them to try and cure his son. He is mad at Autism Speaks founders Bob and Suzanne Wright because they have not publicly embraced and endorsed DAN and ARI. He finds this particularly galling because their autistic grandson is being treated by a DAN practitioner.  

But that is not the whole story. The Autism Society of America [ASA] and ARI announced a research partnership in October last year. But Rimland died shortly afterwards and there is little evidence on either organization’s website of progress in this area. At the same time Autism Speaks has been making real headway. Its video, Autism Every Day, received widespread coverage, including a showing at the Sun Dance Festival and was heavily promoted among politicians in the run up to approval for the Combatting Autism Act. Autism Speaks marked the anniversary of its successful merger with the National Association for Autism Research [NAAR] in February by finalising a merger with Cure Autism Now. [CAN] Autism Speaks was quick to announce its role (courtesy of CAN) in the recent widely publicized report of the Autism Genome Project. Autism Speaks has also established itself in the UK and in Canada. While its US website still affirms its commitment to

funding global biomedical research into the causes, prevention, treatments, and cure for autism.

the UK website has a much more inclusive statement that avoids mentioning cures. 

Autism Speaks is a registered charity that raises funds to accelerate biomedical research to determine and understand the causes and biological basis of autism spectrum disorders; and through that understanding to discover and promote new ways of improving the quality of life for all those affected.

This is part of an inevitable process of accommodation. Autism Speaks has an ambition

to become a worldwide organisation by developing communication, organisational and fundraising models that encourage funders, researchers and those affected by autism to work collaboratively across geographies to ensure that the needs and priorities of each are met.

Collaboration means compromise. Working in the mainstream means that you adapt to the consensus. In the UK the consensus is more congenial to autism acceptance than it is in the USA.  So Autism Speaks has adapted. Some advocates for neurodiversity remain deeply suspicious. I tend towards a cautious and watchful acceptance of their good faith, in the UK at least. Handley, on the other hand, is outraged because he suspects that Autism Speaks are going to drop their support for biomedical interventions to cure autism and accept that autism is more genetic than environmental. These are his complaints against Autism Speaks.

1.      You do not mention DAN! or biomedical treatment on your website, and you have no link to DAN! or ARI or any of the groups on our side of the fence.
2.      When you eulogized Bernie Rimland on your website, which would cause him to roll-over in his grave I am certain, you did not even mention biomedical treatment or recovered children, this is a glaring, glaring omission that speaks volumes about the mindset of the people running your organization.
3.      Your scientific advisory board is populated with some of our world’s worst enemies, including some who have stated on the record that there is no autism epidemic. And, your research choices support this. (The only environmental research you can claim to have sponsored deals with prenatal insults with the notable – and commendable – exception of Richard Deth).
4.      When I met with AS in the Fall, I asked a simple question: “Are you sending anyone from your organization to the DAN! Conference?” After some silence and stumbles, everyone turned to Andy Shih and his answer was basically “No.” The only person in the room more annoyed with this answer than myself was Katie Wright.
5.      None of the research ideas presented to you by Laura and Lyn have received further study or consideration, as far as I know.
6.      Kevin Barry, our former President, was hired by Autism Speaks. On his first day of employment, Mark Roithmayr informed Kevin that he was only there “as a favor to Katie” [ the mother of Bob and Suzanne Wright’s autistic grandson]
7.      You succeeded in completing alienating Deirdre and Don Imus, our community’s most important public advocates.
8.      The clarification by Alison Singer regarding her unambiguous statement to the Wall Street Journal only further clarified how far Autism Speaks is from the environmental camp. I’m pretty sure we are soon going to see funding to try to unravel the “genetic epidemic” we are experiencing.

I will not go into all these points right now. I expect other Autism Hub bloggers will have something to say about this. Handley ends by giving the email addresses of some  Autism Speaks luminaries for you to complain to. If they have managed to annoy Handley so much I suggest that congratulations and encouragement to do more of the same are in order.

Mark Roithmayr: mroithmayr@autismspeaks.org

Bob Wright: Bob.Wright@nbcuni.com

Suzanne Wright: suzanne.wright@nbcuni.com
With extreme annoyance and frustration,

JB Handley

It could be, JB, that you might be wrong. Just something to think about.