Action For Autism

The Way Things Look To Me

When I started reading The Way Things Look To Me by Roopa Farooki I thought, “Oh no. Here we go again.” The story revolves around an autistic girl called Yasmin and it soon became obvious that Farooki had done her research – rather too obvious. For Yasmin is no ordinary autistic girl. She is an autistic savant with a history of seizures. She has a perfect memory and a talent for languages and mental arithmetic. She loves classical music and because of her synaesthesia she experiences music as both colour and texture. She expects to pass her A levels with 3 A’s and a B and have her pick of university places. Just for good measure she can draw like Stephen Wiltshire! And they are making a TV documentary about her.

I am reminded of Christopher, the protagonist in The Curious Incident of the Dog in the Night-time, who, despite critical acclaim for the novel, annoyed many autistic adults of my acquaintance. They objected to a portmanteau figure who was crammed with so many autistic features that he became a caricature rather than a character. For some there was also the uncomfortable feeling that they and not the “Incident” were the real subject of curiosity, alongside resentment that a neurotypical author and his publisher were profiting from turning their neurodiversity into a freak show.
Farooki seems aware of this and the text is replete with indications of her own intention to treat autism with respect. The briefing for the documentary refers to the gift of Aspergers. Yasmin shows signs of improvement rather than getting better. Aspergers is a difference rather than a disease. Thus we have a novel that is written under a tremendous burden to be both accurate and politically correct about autism. A lesser writer would fail under this double interdiction. But Farooki has such a firm grasp of character and plot that she succeeds in telling a story that is engaging and convincing to the end.
This novel is not just Yasmin’s story. Her siblings, Lila and Asif, are if anything even more important to the story. They blame her for their unhappy childhood and she is a convenient scapegoat for the current difficulties in their lives. Lila, who is in her own words a shallow bitch, believes her own self worth is literally skin deep and feels betrayed by the eczema that compels her to scrape and groom this treacherous skin in order to present an acceptable image to the world. Asif has no problem presenting a respectable image to the world. He is, as his mother always told him, a good boy. But his impeccable behaviour conceals a person torn by self doubt and recrimination. Asif may be a good boy but he thinks of himself as a bad person.

Yasmin herself says a lot but does remarkably little in the story. Nevertheless she exerts a controlling influence through her perfectly articulated commentary that grips the reader. Will she succeed? Will Lila and Asif ever find happiness? And what about Yasmin’s happiness and desire? Does that count for anything? Farooki makes everything count in a tale that combines familial dysfunction with an honest appraisal of personal disability. She manages this so expertly that it leads to a totally convincing denouement that leaves the reader guessing right up to the end.

The Curious Incident introduced autism to the mainstream of modern literature. It waved the flag and said, “Hey, this is autism.” The Way Things Look To Me goes further. It asks questions of its characters and of us, its readers in relation to autism. This makes it a better book than The Curious Incident. It is an important book like Elizabeth Moon’s “The Speed of Dark.” She combined her experience as the parent of an autistic son with her expertise as a science fiction writer to envisage a future world in which childhood autism had been eliminated and the remaining autistic adults were tolerated for their unique abilities while being resented for those self same abilities. The Curious Incident moved autistic adults to anger. The Speed of Dark moved them to tears. I do not know what they will make of The Way Things Look to Me. But this neurotypical enjoyed it immensely. Roopa Farooki knows how to write.

August 31st, 2009 Posted by Mike | Neurodiversity, literature | 14 comments

Autism Speaks and the United Nations

There has been some consternation amongst critics of Autism Speaks at the news that it has been designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI). Both LeftBrainRightBrain and The New Republic have articles explaining why this is not a good thing for the autistic community and their allies. Autism Speaks has a dubious record in misrepresenting the facts about autism and its refusal to appoint any autistic person to a position of influence or authority undermines its stated aim of achieving one voice for the autism community.

I can think of at least three routes to achieving one voice.

1. A consensus position is achieved based on discussions involving the whole autism community.
2. A single view prevails by force of argument based on the evidence.
3. A single view held by a powerful organization prevails by force majeure.

In my opinion we are still a long way off developing the means to pursue route one. I think that the whole community is going to have to learn to live with some sort of pluralism in which many voices are heard and listened to. We are unlikely to achieve one voice except by force majeure and Autism Speaks seems to agree. It is using the wealth and power of its founders to impose their view as the voice of the autism community.

Does this mean that it will now impose its view on the United Nations? I think this is unlikely. There are thousands of NGOs involved with the UN. 1664 are associated with the DPI alone. At present I believe Autism Speaks is the only autism related NGO. But there is nothing to stop other organizations from applying. I will suggest this within the National Autistic Society. So long as you are a not for profit organization that can meet the criteria, you are free to apply.

I have seen suggestions that its critics should protest at UN recognition for Autism Speaks. This will have no effect on the United Nations and could reflect badly on us. Autism Speaks reflects the consensus opinion on autism in the larger community more so than do proponents of neurodiversity. It is much better, in my opinion, to raise our voices rather than be seen as trying to silence theirs. Autism speaks with many voices would be a possible slogan to organize around in the run up to World Autism Day on April 2nd next year. Getting a positive message for autism acceptance and the ideas of neurodiversity into the public arena will serve us better than a negative campaign.    

Meanwhile, Autism Speaks official recognition by the UN could be quite useful. A few of us are waiting for answers to questions about autistic representation within Autism Speaks. Accoding to the criteria for recognition

the NGO should have statutes/by-laws providing for a transparent process of making decisions, elections of officers and members. 

In view of their official status as an NGO I think it is in order to repeat our questions and to copy our requests for transparency to the DPI at the UN. Contact details for the DPI are here.

It is also the sixtieth anniversary of the Universal Declaration of Human Rights. Although it seems to be honoured more in the breach than in the observance, this is an important campaigning tool. Another of the criteria for recognition states that

the NGO must support and respect the principles of the Charter of the UN and have a clear mission statement with those principles.

So how does Autism Speaks propose to mark the sixtieth anniversary? In particular, what steps do they propose within the autistic community

to ensure that every individual, no matter where they live, or in what circumstances, understands the rights to which the Universal Declaration entitles him or her.

It would be instructive for self advocacy organizations within the autistic community to approach “the world’s largest autism advocacy organization” and “officially designated a non-governmental organization (NGO) associated with the United Nations Department of Public Information (DPI)“  to ask for its support in campaigning for the rights enshrined in the Universal Declaration to be applied to autistic people everywhere. It would seem appropriate to use this opportunity to call upon the incoming President to announce a date when the USA will ratify the UN Convention on the Rights of Persons with Disabilities.

Now that Autism Speaks is open to public scrutiny as an official NGO of the United Nations I think that proposals for joint activity around principles held in common with the UN are a positive way to get our messages across and challenge the old thinking.

December 26th, 2008 Posted by Mike | Autism Speaks, Neurodiversity, Uncategorized, disability rights | 25 comments

Autism Speaks - will it ever speak for us?

Lisa Jo Rudy on The Autism Blog asks why Autism Speaks’ New Board Members Include No One with Autism? It is a good question. Autism Speaks has grown phenomenally since its inception in 2005. Suzanne and Bob Wright set up Autism Speaks in response to their grandson’s diagnosis of autism. Bob Wright’s background as president, then chairman and CEO at American media giant NBC helped shape the organization of Autism Speaks.

It is a not for profit corporation that is run from the top down with a high powered staff and a board of directors who bring personal wealth, business acumen and, in many cases, a family connection to autism.  But after three years of spectacular growth it still has not appointed anybody with autism to a senior post within the organization. There is no lack of suitable candidates. As Lisa Jo Rudy points out:

It’s not as if the Wrights (who run Autism Speaks) don’t have impressive people on the autism spectrum to choose from. There are authors, speakers, professors, researchers and artists - all of whom have impressive public profiles, all of whom have the appropriate credentials, and many of whom would be eager to take an active role with Autism Speaks.

But if we look at the history of Autism Speaks in more detail it is pertinent to ask why the Wrights would ever consider inviting autistic people onto the board. And even if they did would autistic people feel comfortable joining Autism Speaks?

HISTORY

Despite its humble beginnings, with a handful of employees in a tiny makeshift office, Autism Speaks grew rapidly thanks to the Wright’s extensive contacts in the media and business worlds from whom they recruited fundraisers and board members. Bob Wright’s position as head of NBC probably helped ease the path for a week of autism awareness programming in February 2005 that culminated with the launch of Autism Speaks on the NBC’s Today Show and CNBC’s Power Lunch on Friday, February 25.

From the outset Autism Speaks was aligned with the National Association for Autism Research, (NAAR) which had raised over $20 million for autism research since its inception in 1994. Within a year the two organizations had merged. This was the key to Autism Speaks success. Bob Wright was in a position to deliver national media coverage and celebrity fund raisers like Paul Simon. This gave Autism Speaks a much higher profile than any other autism organization and a massive fund raising capacity. But it lacked infrastructure. This was obtained via a series of acquisitions and mergers, first NAAR and then, in 2007 Cure Autism Now (CAN) which had previously disbursed grants of $39 million in its 12 year history.

By any measure Autism Speaks has been an outstanding success. NAAR and CAN provided nearly  $60 million for research over 12 years. In 2007 alone Autism Speaks provided $30 million. Generation Rescue can afford to buy advertizing space in newspapers at $100,000 a time. In contrast Autism Speaks’ advertizing campaign attracted donated media worth $81million! It is working with federal agencies like the CDC and NIH. It has lobbied hard to get autism bills through Congress. It has expanded its Autism Treatment Network and has begun funding services for families including an online directory of resources. In addition to the wealthy sponsors who gave $16 million in 2007 it has also developed its local fund raising base with over 300,000 volunteers, mainly participants in sponsored walks for autism.

CONTROVERSY

Autism Speaks’ history is surprising for a number  of reasons. Bob Wright has a consistent policy to uncover the cause(s), prevention, treatments and cure for autism. But he has managed by and large to avoid involvement with the biomedical movement of autism treatment and its increasingly strident anti-vaccine stance. This is despite the fact that his daughter is heavily involved with anti vaccine groups Safe Minds and  NAA and has been critical of Autism Speaks on some of the vaccine/autism groups on the internet. Whatever his personal views on vaccines Autism Speaks remains firmly wedded to mainstream science. (There is evidence to suggest that Bob Wright is at best equivocal on the subject.  See his response to anti vaccine sentiments at a public meeting in London)

Autism Speaks has grown despite its lack of theoretical coherence. It uses the rhetoric of the “autism epidemic” and refers to autism as a “global health crisis” in order to generate a sense of urgency and drive its fundraising. It attempts to appease the anti vaccine camp with a policy statement that supports more research into vaccine safety. But the scientific priorities of its merged partners, CAN and NAAR are biological rather than biomedical. They stress genetic research and tissue banks. These priorities are reflected in Autism Speaks budget allocations and, as epitomized by Katie Wright, have guaranteed the deep hostility of the biomedical/anti vaccine movement.

At the same time their slick fundraising techniques have alienated some mainstream autism groups whose efforts to raise funds for use in the local community have been udermined by hostile tactics from Autism Speaks including organizing competing events for the same charity dollars.

And finally, Autism Speaks’ commitment to treatment, prevention and cure has done nothing to endear it to the community of autistic adults and to parents and researchers who are moving towards the ideas of autism acceptance and neurodiversity. These ideas provide an alternative to the medical model of autism that Autism Speaks has adopted. But apart from the aforementioned public meeting in London Autism Speaks shows no sign of engaging seriously with this alternative view.

BIG AUTISM

Autism Speaks is the corporate face of autism. It is effectively Big Autism in the USA and it is seeking to expand overseas. But there is an unresolved contradiction at its heart. It is driven by Bob Wright’s determination to find a cure for his grandson. This hope for a cure has brought a significant section of the autism community on board. And Bob Wright is using this support to raise awareness and money to fund the scientific research to bring him the answers he wants. The high profile ad. campaigns, the headline grabbing fund raising spectaculars and Bob Wright’s hands on approach to running Autism Speaks all put pressure on the scientists at Autism Speaks to deliver. But what if the scientists cannot deliver? What if the critics of the medical model are nearer to the truth about autism? Does the business ethic that drives Autism Speaks allow for a rethink of their strategy and a new direction?

I hope so. If Autism Speaks can accommodate the sort of debates about acceptance and inclusion that have strengthened the National Autistic Society and led directly to its “Think Differently About Autism” campaign, then maybe it can change the face of autism advocacy in America. The changes in the NAS arose from the activity of autistic activists and their allies within the organization. If Autism Speaks continues to exlude such people and with them all possibility of internal debate it will be contributing to its own eventual demise. Until then, whatever the results of the science it is funding, as a corporate entity it remains a potent source of harmful propaganda about autism.

December 14th, 2008 Posted by Mike | Autism Speaks, National Autistic Society, Neurodiversity | 21 comments

National Autistic Society International Conference - impressions

Last month I attended the International Autism Conference organized by the National Autistic Society. Unfortunately I had to leave early in order to get home before scheduled engineering work severely curtailed my rail journey home. So I had to leave part way through Stephen Shore’s presentation and miss the presentations from Rita Jordan and Simon Baron-Cohen.

My primary reason for attending the conference was to deliver a poster presentation advertising the Autism Hub. This was hardly onerous, though not without controversy. See the discussion on my previous post for details. I had to arrive early on the Friday morning and put the poster up in the designated area. Thereafter it was my job to be available during breaks when people visited the poster area and to give out calling cards for the Autism Hub. I wore my Hub T-shirt throughout and had some interesting conversations, mainly with people who were curious about what blogging was. For those of us who blog or otherwise use the web to interact on a regular basis it is easy to forget that for many people the internet is something they visit for information or entertainment. Participation in online communities is not central to many people’s involvement with autism.

This will probably change. When it does, it may be that social networking sites like Face Book are more important than blogging and we bloggers will become oddities, like previous participants in Usenet and bulletin boards. Of course Face Book may have become completely passé by then and overtaken by some new development. For all I know it has happened already and nobody told me!

Back to the Conference

The first International Conference, three years ago, began with a marvellous introduction from Lorna Wing. This year we were treated to an equally inspiring opening. Only this time it was a drama presentation, on film and live on stage, by autistic students from the Sybil Elgar School in London. They were superb! I hope the video is posted on YouTube.

In contrast, the opening presentation from Sir Michael Rutter was serious and low key. Rutter has been involved in autism research almost from the outset. He is uniquely placed to give us an overview of what we know and what we still need to learn about autism. The answers to these two questions were at the heart of his presentation. The result was an authoritative review of the current state of scientific knowledge and of the limitations of that knowledge. Rutter made a very interesting point in relation to ABA – Applied Behavioural Analysis. He regards its efficacy to be non-proven mainly because in all the studies to date nobody has controlled for two key variables. Is it the earliness, the timing of the intervention that is crucial or is it the intensity? Interestingly, he did not comment on the most important variable, the content of the intervention. Perhaps any dream will do?

Rutter is old school. He clearly subscribes to the deficit model of autism as a condition defined by its impairments. At one point he remarked on the fact that of all the mental disorders, Tourettes, Schizophrenia, OCD, ADHD, etc., autism was unique, in that it was the only one that did not respond to neuroleptic drugs. My immediate thought, which I later found was shared by some others in the hall, was that if autism was so unique amongst all the mental disorders in its resistance to drug treatments, perhaps it was not a mental disorder after all.

The conference styled itself as “Research into Practice.” I was looking forward to contributions that brought us leading edge research that would either challenge Rutter’s position or at least take up the unanswered questions he posed to conference. Unfortunately the “big draw,” Professor VS Ramachandran with his theory of mirror neurons had cancelled and a re-jigged agenda, while retaining interest, was a trifle ordinary by comparison. By lunchtime on the second day I had enjoyed a good conference but felt that there was very little new that I could not have found elsewhere, either online or by reading the literature. Perhaps, if the rail schedule had permitted, I would have been suitably “wowed” by Rita Jordan and Simon Baron-Cohen. Never mind. There were compensations.

One highlight was a panel discussion of media presentations of autism. It was chaired by NAS president and actress Jane Asher, who famously appeared in an episode of Holby City which featured a storyline about her character’s involvement with a young man with Aspergers Syndrome. The panellists were Alex Thomson - Chief Correspondent of Channel 4 News and parent to an autistic child; Dr Stuart Murray - Leeds University and author of Representing Autism; Diana Kyle - Holby City series producer; documentary film-maker Saskia Baron, whose brother is autistic; Angela Pell - screenwriter of the film Snowcake; Henry Normal – married to Amanda Pell, writer and TV producer (he and Amanda have an autistic son); and Ros Blackburn who is autistic and worked closely with Sigourney Weaver when filming Snowcake.

Some interesting themes emerged.

Like many of us, Alex has been ill-served by the system with respect to his child. He wanted the National Autistic Society to be more forthcoming and provide leadership that could shape the media agenda on autism, rather than respond to it. The news agenda is not necessarily one that best serves the interests of the autism community. Take the MMR hoax, which began with a rogue scientist but was only sustained by persistent media attention. Alex’s partner has recently produced a report on Ben Haslam that I blogged about. This is an example of the real autism stories that need telling in the media.

Stuart made the point that while we might hope and expect documentaries and news reports to provide a more accurate representation of autism, fiction has a much higher impact. Discussion centred on the use of autism as a prop. Diana made the point that the story has to come first and the autistic character has to emerge from the plot and not just be a cypher or a McGuffin in Hitchcock’s famous turn of phrase. Diana also informed us that with Holby City, a hospital drama, there was a three month lead in to every episode in which patient advocacy groups were consulted to ensure accurate and respectful portrayal of the medical condition that featured in the episode.

Angela stressed that the autistic character in Snowcake did not change. The audience still identified with her. They were challenged and they had to change. Instead of “make me normal” we had “make you more accepting.”

Saskia spoke of television being an unsubtle medium. It tends to go for the obvious, the dramatic. Hence quiet stories of everyday life, something she strives for in her work, are hard to capture and portray.

During the discussion autistic adults spoke up about the importance of being valued and not being constantly portrayed as “damaged goods” by the media. But while autistic people deserve acceptance and understanding, that does not mean that they do not experience real problems as a result of their autism alongside those problems that arise from other people’s ignorance. Ros spoke eloquently about the problems that autism cause for her and her fervent wish that research could provide her with some relief from these.

There was a lot more. But overall I got the impression that it is possible to get accurate and effective portrayals of autism into the media and on to prime time television provided we do our homework, take time to understand their agenda and give them a story they can tell with confidence.

The Triad of Perspectives

Olga Bogdashina was a marvellous plenary speaker. Like many professionals her introduction to the world of autism came via her own children. She shared with us the terrible judgement that she received from a consultant, that her son was a hopeless case and it would be better if he had died. “Better for whom; me, him or you?” was her splendid reply. Suffice to say that mother and child are doing well and so is his autistic sibling.

She criticised the triad of impairments as too one-sided. Why are all the impairments on the autistic side? What if it is a triad of differences? Difference may make communication hard work. But maybe the reason is that we lack a Theory of the Autistic Mind. She spoke at length about the Triad of Perspectives, how parents, professionals and autistic people all view autism differently and we all have our own impairments. I really warmed to her descriptions of the active but odd professional (I’ve been to a conference so now I’m an expert) and the passive parent. (Tell me what to do, not why)

She also gave an excellent workshop on communication. Autistic people do not communicate in a defective way that needs correcting. They communicate in ways concordant with their perceptual and cognitive experience of the world. Instead of trying to “fix” them and teach compliance to our mode of communication, we should learn to understand their experience and look for ways to translate between the two modes. Rather than insist on them using our mode all the time, perhaps we should demonstrate our legendary theory of mind and try and communicate on their terms.

I received a practical illustration of this when I struggled with the presentation on Oxytocin by Professor Evdokia Anagnostou. I found her slides difficult to read and her accent difficult to understand. And she spoke very quickly about a complex subject, making no concessions to this particular listener’s lack of knowledge.

I had a similar experience with Larry Arnold’s workshop on the progress of his PhD thesis: “Video as an educational tool in Autism, an under researched topic.” In this case, although I had no problems following his arguments, I did challenge him later on the complexity of the ideas in his presentation. Larry made the telling point that this was an international conference. He was not explaining his ideas to the uninitiated. He was opening up his research to critical commentary by his peers.

Challenges Faced by Families

Olga’s presentations chimed well with the family workshop featuring Virginia Bovell, John Dickinson, Josh Muggleton, and Steve McGuinness. There was no sugar coating of the difficulties that autism can bring but they still managed to strike a positive note.

Virginia is the mother of a severely affected child who attends a specialist school based on the principles of ABA. She spoke honestly about the pressures that autism places upon the whole family, a theme reiterated by her fellow speakers. She also discussed the symptoms that are sometimes disregarded by clinicians as behavioural manifestations of autism rather than being diagnostic of additional medical conditions and paid tribute to the doctors at the Royal Free in London who saw past her son’s autism to treat his gastro-intestinal disorder and continue to make his appointments as stress free and autism friendly as possible. It is good to know that the notoriety that Andrew Wakefield attracted during his time there has not caused lasting harm to this proud institution.

John was particularly poignant in his account of raising his high functioning daughter in an era before high functioning autism and Asperger Syndrome were recognized. In his daughter’s case diagnosis came in early adulthood. My own son was not diagnosed until he was 12 and I well understand the regret at missed opportunities to ease a child’s path through autism. As an aging parent I also share John’s concerns for the future after his death and how this affects not just his daughter but also her neurotypical siblings.

Josh, who has Asperger Syndrome, was also concerned that the needs of siblings should not be neglected. He knew that autism made life difficult for those around him. He also knew that other people’s attitudes to autism were also a problem. He was bullied “because” he was autistic. Or was he? When siblings and parents are bullied (again, I speak from experience) are we bullied because of autism or because there is something wrong with the bullies? It need not be overt bullying. Social isolation affects the whole family.

Steve, who is autistic and the parent of an autistic child, suggested that people with autism are more tolerant of non-autistic people than we are of them. Barriers to inclusion are erected by non-autistic people who lack knowledge and understanding of autism. Autistic people spend their whole lives trying to understand and adapt to societal norms. When they succeed they are given little credit. But when they stumble they are condemned. The media is quick to promote negative images of autism, whether it is the imputed financial burden on the state or the invocation of autism as the reason whenever an autistic person commits a crime. Neurotypicality is never invoked as an explanation of criminal behaviour, even though most criminals are neurotypical and not autistic.

Virginia told me that all of them wanted to stress that it was as much society’s response to autism, as the autism itself, that people should be looking at when thinking about pressures and challenges.  Too often people hone in on the ‘disorder’ without looking at how much easier life could be if society was more understanding and generous towards autistic people and there families. That hour probably said more about the needs of autistic people and their families than any other session at the conference. Next time the organizers should make it a plenary session and not a workshop so everyone can benefit from it.

Research into Practice

So, a good conference, but it could have been better. I noticed the numbers were down, six hundred compared to a thousand at the previous conference. That suited me. It was more manageable and less overwhelming. But we also had the IMFAR conference in London earlier this year which may have stolen some of the thunder from the NAS.

My impression was that the question of how autistic people perceive and understand the world was fairly central to the whole event. All the workshops and plenaries that directly involved autistic people, the presentations by Olga Bogdashina and the workshop by Michael McCreadie of Daldorch House School on “Sensory issues in autism,” they all presumed that the autistic perception of the world was as valid as the non-autistic perception of autism. If “Research into Practice” is to become more than a conference title, then autism researchers will have to go beyond the view of autism as deviant behaviour based on defective neurology. They need to consult with autistic people about their priorities and their perceptions in order to inform research priorities in the future.

October 7th, 2008 Posted by Mike | National Autistic Society, Neurodiversity, research, science | 6 comments

Hub Bloggers at the International Autism Conference in London

Well, I am off to London tomorrow to the International Autism Conference. As well as meeting up with old friends and listening to some of the leading edge contributors to our knowledge about autism I shall also be making a modest contribution to the proceedings when I present a poster entitled The Autism Hub: how blogs can help inform research priorities. This is what it says.

Introduction

The internet is widely used by members of the autism community as a source of information, guidance and support. Different experiences of autism have led to the formation of online communities that often have opposing views.

A recent study (1) that predates the formation of the Autism Hub analysed the content of autism blogs and suggested that there is a divide between the aspirations of parents and autistic adults. Parental experience of the difficulties associated with raising an autistic child leads them to look towards science and medicine to tell them what causes autism and, more importantly, how to cure it. Adults who have come to an accommodation with their condition seek understanding and support but do not want to be cured of who they are. Some would go further and, taking their cue from Hans Asperger’s positive reference to autistic intelligence, (2) argue that there are particular aspects to autistic thinking that society could ill afford to lose if we ever found a way to eliminate autism. This idea of valuing people and accepting their differences is usually referred to as Neurodiversity.

There is also a history of divisions between parents and professionals. This has its roots in the discredited idea of refrigerator mothers from a time when psychodynamic theories reigned supreme. Parents rejected the received scientific and medical wisdom and were vindicated when autism’s biological roots were established in the late 1960s. Nowadays a significant number of parents reject the idea that autism is largely genetic in origin and believe that the growth in recorded numbers indicates an autism epidemic.  They believe that this “epidemic” can only be explained by neurotoxins that are poisoning the brains of otherwise healthy children.  Controversially they believe that vaccines are a prime source of these neurotoxins. Even more controversially they believe that biomedical interventions, including chelation, special diets and hyperbaric oxygen therapy can reverse this damage and “recover” their children. They are encouraged in their belief by a range of alternative therapists promoting pseudo-scientific theories and so-called cures. These “brave maverick doctors” and the parents who support them expect to be vindicated just as the opponents of the refrigerator mother theory once were.

The Autism Hub - Origins

The Autism Hub began in part as a response to this biomedical movement. The mainstream scientific and medical community dismissed them. But they continue to influence public opinion via the media and influential supporters in public life, especially in the USA. We regard their terminology referring to toxic children, devastating disease, autism tsunami etc. to be offensive and damaging to autistic people. Some of their treatments are potentially dangerous or distressing to autistic children with no discernible benefit. A number of hub bloggers are professionals in the fields of education, information technology, science and medicine who happen to be the parents of autistic children.  They have devoted their time and expertise on their blogs to debunking the myth of an autism epidemic and the claims of the biomedical movement.

The Autism Hub – Growth

This quack busting role is still important but our real growth has come from promoting the idea of Autism and Acceptance and Neurodiversity. This comes from the blogs of autistic people, the majority of Hub bloggers, who provide a thoughtful and often challenging perspective on their lives and also from parents who have learned that the best way to help their children is to work with their autism rather than against it. We identify our children’s strengths and seek to develop these rather than always focusing on deficits and disorders. Our children are so much more than the sum of their imperfections. Perhaps the most striking example from a parent is Estee Klar Wolfond’s’ “Joy of Autism” blog out of which has grown “The Autism Acceptance Project.”

The Autism Hub – Science

As well as debunking bad science and providing positive images of autism, the Hub seeks a constructive engagement with mainstream scientists and practitioners in the field of autism. We are concerned that so much science is presented in terms of “curing,” “preventing” or otherwise “eradicating” “this devastating disorder”.

1. The language used is extremely disturbing to autistics, who read this and think they are going to be eradicated. Research scientists may not mean that. But if the people they are trying to help feel threatened by what they hear perhaps scientists should choose their words more carefully. 
2. An unremittingly negative view of autism can also lead to acceptance of risks that would be unacceptable in a non-autistic population. To take a recent example, researchers at the National Institutes for Health proposed to test anecdotal claims for the benefits of chelation by chelating a sample of autistic children. They specifically ruled out children who had high levels of lead or mercury because it would be unethical to give placebo to children who needed treatment. We consider it equally unethical to treat healthy autistic children for metal poisoning and find it significant that no healthy non-autistic controls were to take part in the trial. Hub members blogged this extensively and lobbied the NIH with our concerns. The trial is halted for now because an animal study suggested that healthy individuals could suffer cognitive damage from unnecessary chelation.
3. Most autism research is presented in terms of deficits and dysfunctions. There are some well documented cases of autistic abilities. One of the Hub members, Michelle Dawson, is closely involved in the work of a lab that is promoting autistic abilities. She is autistic and, despite a lack of formal academic training is seen as a valued colleague by her fellow researchers, and has been lead author on one of their peer reviewed papers. (3)
4. Another Hub member, Amanda Baggs, achieved temporary celebrity status with a YouTube video that resulted in her sharing valuable insights with researchers at MIT.

The Future

Computers have been described as “wheelchairs for autistics.” The analogy holds good. Computer technology and the internet have empowered many who would find normal face to face interactions extremely difficult. They can build web sites, write blogs and create videos. Indeed, the Posautive blog on the Hub is devoted to bringing these videos to the wider world.
It is also the case that without the technology it is impossible to imagine the people who make up the hub ever coming together, separated as we are by class, culture and country. But we have come together. The NAS has a campaign for autistic adults, “I exist!” and full marks to them for that. But the internet is helping to develop a collective voice and vision for autism.

WE EXIST!

We exist in real life as well as on the web. We are here today at this gathering of the autistic community because we want dialogue and partnership with autism researchers. In the USA we have successfully joined an event at San Diego University where Hub members presented to the research community there. We are planning a similar event in the UK.

CONCLUSION

1. 1. Autism Hub is a not for profit grouping of autism bloggers from around the world funded entirely by its members.
2. We are the only online organization that brings together parents, practitioners and autistic people based on the principles of neurodiversity and autism acceptance.
3. We seek to advertise our presence to the broader autism community as we did with our recent presentation at the Summer conference of the Autism Institute at the University of San Diego. 
4. We welcome evidence based support for autistic people and research that addresses the hopes and aspirations of autistic people and their families. 
5. We feel that our perspective is one that is rarely heard within the research community and hope that a conference that poses the question, ‘How does research help people with autism?’ would want to hear our voice.

References

1. Clarke J, van Amerom G. Asperger’s syndrome: differences between parents’ understanding and those diagnosed.  Soc Work Health Care. 2008;46(3):85-106.

2. Uta Frith. 1991 Autism and Asperger Syndrome Cambridge University Press,

3. Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, Laurent Mottron. The Level and Nature of Autistic Intelligence Psychological Science Volume 18 Issue 8, Pages 657 - 662

September 17th, 2008 Posted by Mike | Neurodiversity, autism advocacy, research | 25 comments

An Alliance for Autism

I am still curious as to whom Mady Hornig and Ian Lipkin consulted in the “autism parent/advocacy community” before carrying out their recent study that found no association between  the MMR vaccine and Autism and no association between the MMR vaccine and GI disorders. So I wrote to the press officer.

Your press release entitled “Study Firmly Shows No Connection Between Measles, Mumps, Rubella (MMR) Vaccine And Autism” quotes Professor Lipkin as saying,

“The study design process was a critical piece for us, as there is still so much public concern over the safety of the MMR vaccine. For this reason, we involved the autism parent/advocacy community as we designed the study to ensure that all issues were being addressed. We are hopeful that this process of community engagement will build important partnerships among members of the autism community, physicians, public health agencies, and clinical researchers; serve as a paradigm for the conduct of future studies to understand the causes of this disorder; and facilitate the rapid communication of clinically relevant scientific findings to the broader community.”

I note that many of the parent advocacy groups like NAA and Safe Minds are openly critical of the paper and wonder which advocacy groups did you consult? I am a  member of the Autism Hub, a community of bloggers that broadly welcomes the results of this study. We include parent advocates, professionals and autistic people. We support evidence based medicine and uphold the values of scientific enquiry. We oppose the pseudoscience and quackery that infests many of the parent advocacy groups. There is no compelling evidence for an autism epidemic, vaccine induced or otherwise. There is no evidence for the efficacy of the biomedical “cures” being touted to parents groups.
 
We are trying to get the research community to understand that these people - TACA, NAA, Generation Rescue, Safe Minds etc. do not represent the views of most parents. Celebrity endorsement from people like Jenny McCarthy has helped to give them a disproportionate presence in the media that belies their actual importance. To this end some of our members recently took part in a panel discussion at the University of San Diego and I am presenting a poster on our activities at the upcoming International Conference in London organized by the National Autistic Society. We would welcome a dialogue with the research community that helps to place the needs expressed by autistic people and their supporters at the heart of the research agenda.

The Autism Hub is not really an organization. We are more like the expression of an idea. I suspect that our greatest strength, our diversity, is also potentially our greatest stumbling block when it comes to building an organization. But there is a need for organizations that embody the principles of the Autism Hub, if only to give the lie to the claims of the anti-vaccine parents that they represent the autism community. They are invited to sit on the Interagency Autism Coordinating Committee. They are consulted about the the design of academic studies. They have ready access to the media. This is not because they are popular. They do not enjoy mass support. After all no more than 2000 people attended their Green Our Vaccines Rally in Washington. The latest figures confirm that less than one per cent of US children are unvaccinated. But they are organized. 

I know that there is a tradition of self organization within autism. The Autistic Self Advocacy Network and Autism Network International are prime examples. The only drawback with such organizations is that it is hard for them to organize children. And while I may be convinced that the best advocates for autistic children are autistic adults our present culture does privilege parents in this respect.

The anti-vaccine parents are vocal and committed. They have no qualms about claiming to represent the autism community. But autism hub  parents are constrained from challenging them because we would feel uneasy about claiming to represent “our children” if it meant disenfranchising all the autistic adults who would much rather speak for themselves, thank you very much.

The answer is to build an organization of parents and autistics. It may not be easy. Parents and adults do have differing agendas. Potential sources of disagreement include questions like:

• Is autism a disability or a difference? Can it be both?
• Is our agenda the same for all autistics regardless of their potential for independent living?
• Autistic adults need accommodations more than interventions. But is the same true for children?

I think  we need an Alliance for Autism that reflects our diversity. It would work like this.

1. We should not try to resolve all our differences in advance and create a perfect organization with no internal conflicts.
   • Otherwise we would be forever involved in meetings about meetings and looking deep into theoretical discussions. Meanwhile nothing happens. 
2. We should not ignore our differences and pretend we are all united by tacitly sweeping all our differences under the carpet.
   • This would just lead to us adopting meaningless forms of words that tried to paper over the cracks in our campaign. I am sure that McCain and Obama will provide us with plenty of examples of this in the months ahead!
3. We should be able to acknowledge our differences and agree to disagree on any number of issues providing we can come together on those issues that do unite us.
   • As an old time socialist my favourite analogy is the picket line.  There can be all sorts of debates and disagreements expressed until the strike breakers make an appearance. Then you suspend your debate and link arms to see off the threat.

I would like to see an organization develop along these lines to counter the influence of “the usual suspects” in Safe Minds, NAA et al. and get our voices heard in the media and at the conference table. How about it?

POSTSCRIPT

Prior to posting this I consulted with friends in the autism community. They raised some important concerns which I hope I have accurately summarized thus and I append my responses thus. (NB I a not reprinting email exchanges on my blog. I am reporting on what I took away from these discussions and how they have influenced my thinking.) 

Do we really need another parent founded, parent led organization. Shouldn’t we be allying with and empowering existing organizations like the Autistic Self Advocacy Network which are founded and led by autistic persons?

The reason why I am proposing the alliance, as opposed to developing an existing organization like ASAN goes back to my experience as an anti-racist activist in the 1970s when we were concerned about the growth of the far right in the UK.There were anti-racist  and anti fascist groups out there but none of us had mass appeal and just bringing us together was difficult because of all the ideological baggage different groups brought to the table.

The solution was the Anti Nazi League. We came together around a single aim - to expose the far right as the Hitler loving nazis they really were. We did not ditch our ideological differences. We did agree that they were not relevant at that moment in time to the specific task of the ANL. The result was a broadbased movement that went far beyond the collective reach and appeal of the original activists who set it up.

Translating that to today and building an alliance for autism I would want it to be able to attract and speak for parents who want evidence based therapies for their children and may even believe they want a cure but are horrified at the anti-science, anti-vaccine stance of McJenny & Coy. and the untested “cures” they inflict upon their children.

Such an alliance need not be parent led but I think it needs to be parent focused. Existing advocacy organizations like ASAN may well prove to be the organizational force behind the alliance. But the aim would be to bring parents on board in a form that governments can recognize and incorporate in structures like IACC at the expense of the existing “autism parent/advocacy community” who are hogging the limelight right now.

An anti anti-vacine organization may be necessary but it is not the same as an Alliance for Autism. A real alliance for autism is defined by what it supports, not by what it opposes.

I agree. To continue with my analogy from my days in the ANL, we were fortunate that a parallel organization - Rock Against Racism - arose at around the same time. They emphasized the black origins of most popular music and organized concerts and music festivals under the positive banner of “Love Music Hate Racism.”  Both organizations enjoyed a symbiotic relationship for a crucial time when they supported each other and both were strengthened.

Translating this experience to the autism community I suggest that we build the bits we need and then see how they fit together. Some people will be building the ”anti” bits. Others will be building the positive bits. and we will find an accommodation with each other.

The vaccine issue is a blip of no lasting importance. The real battle will centre upon the myth of “normalization” to make autistic people “indistinguishable from their peers” and the potential for eugenic “solutions” to autism implicit in the current search for genetic markers for autism.

Again, I agree. But right now this”blip” looms large on the horizon and children are suffering as a direct consequence. We have to take it out. In doing so our natural allies are in the scientific community. I agree that long term, the really important argument will be between us and the scientific community about concepts of disease, disorder and the social model of disability. That is one reason why I have sought and gained appointment to the lay consultative panel of the Human Genetics Commission which exercises ethical oversight of the general trends in genetic research in the UK.

We should be positive about autism. Parents are excited by the ideas of neurodiversity. But such an alliance has to be led by autistics.

Yes, absolutely! But we have to acknowledge that most parents do not begin by feeling positive about autism and  excited by neurodiversity. Most parents begin by being wide open to anyone who promises a cure.

And those parents who do learn to accept autism and make the best of it do not see themselves primarily as supporters of self advocacy for autistic individuals. They see themselves as central to advocating for their children and look, in the first instance, for allies amongst similar parents. They take a long time to realise that their children are going to become adults with autism. I use that form of words deliberately instead of autistic adults because I see this phenomenon with parents of all sorts of children, autistic and otherwise at my school. The key point is that, more than most parents, the parents of any child with a disability are inclined to see their child as first and foremost a child, and resist the idea that they will be an adult one day. Once they accept the inevitablity of their offspring leaving the nest they become more open to ideas about self advocacy and human rights issues for disabled adults.
 
In other words parents do not automatically see themselves as being on the same side as autistic adults. They are totally committed on the side of their children. If we suggest that they sign up as parent auxiliaries in support of a generic autistic rights movement  this will strike them as patronizing. I think that mutuality rather than auxiliarity (is that a word?) best captures my understanding of the way forward.
 
The bottom line is that parents have legally enforcable rights and responsibilities in relation to their children. The fact that some parents abuse their rights and ignore their responsibilities should not detract from my basic premise that parents are de facto the primary advocates for their children. Hence we need an alliance in which neither parents nor autistic adults are subordinate or auxiliary to each other.

This is where I am at the moment. It could be that I am wrong. But I think a public debate about where we go from here is the best way forward. I know that clown blogs and hate blogs will mock us.But what else is new? We are a vast community and they are a pimple on the arsehole of humanity. It is time for us to set our own agenda and use our best endeavours to make it so.

September 10th, 2008 Posted by Mike | Autism rights, Neurodiversity, autism acceptance, autism advocacy, autism parents, disability rights, parents, science | 29 comments

Autism Hub and Neurodiversity

Many thanks to Steve and Bev for an excellent performance on behalf of the Autism Hub when they appeared on These Days, a talk show with an audience of tens of thousands in the San Diego area. You can download the interview here. They were being interviewed because both are speaking at the University of San Diego’s Summer Autism Institute entitled Autism; Work With Me, Not On Me. 

They are not alone: Fellow Autism Hub bloggers, Estee Klar-Wolfond, Do’C and Autism Diva who now blogs more often over on LeftBrain/RightBrain are all joining them to give a joint presentation

“Blogging and Autism: The role of the internet in today’s autism community.”

And Estee has her own slot as well:

The Mismeasure of Autism: The basis of current autism “advocacy”

I wish I could have been there. But i am looking forward to reading all about it on their blogs when they return.

Steve asked us to showcase our favourite blogs in case newcomers turn up to see what all the fuss is about. I am reposting an article wrote on Neurodiversity because it sums up a lot of my feelings about autism.

What is Neurodiversity?

What is Neurodiversity? By Mike Stanton

When I attended the International Autism Conference in London last year I heard Professor David Amaral tell the story of a young man with Asperger Syndrome who was visiting the MIND Institute at UC Davis. He was asked what he would do if they could develop a pill for autism. He thought for a while before replying that he would take half the pill.

I think this illustrates a real difference within the autism community. There are many who pathologize autism as a disorder that afflicts an otherwise healthy individual. If you hold this idea you naturally look to understand the causes of autism in order to find that “autism pill.”

The idea of Neurodiversity was developed by autistic people in opposition to the pathologizing model. According to them autistic people are not disordered. They have a different sort of order. Their brains are differently wired. They think differently. They do not want to be cured. They want to be understood.

This is not to deny that autistic people often face real difficulties. That is why the young man at the MIND Institute told David Amaral that he would take half the pill, but not the whole pill.

What does Neurodiversity mean for parents?

The cure mentality places great pressure on parents to rush into interventions. Then there is the guilt. Was there something I did or didn’t do that caused the autism in my child? Can I put it right.? How can I not put it right? Instead of raising your child you can spend all your time trying to fix him. One mother’s story illustrates this.

Olivia was four when Liz finally faced up to the diagnosis, wracked with guilt that, having given birth to her at the age of 42, she was somehow responsible for her child’s problems, either directly or as a result of a pre-natal diagnostic test (amniocentesis) that went wrong.

Her way of dealing with this lonely burden was to take action. “I wanted to rip the autism out of Olivia with my bare hands,” she says. In the years that followed, she whirled her daughter from one therapist to another, trying everything from cranial osteopathy and “brushing” her nerve endings, to Portage - a method of teaching everything in tiny steps.
[…]
“Every practitioner is convinced that his or her treatment is the one and you feel compelled to try everything to find the one that will open up your child. I have seen children who have made remarkable improvements, but I would never say they have been cured or recovered.”
[…]
Having reached a state of mind where, even if she could, she would not change Olivia, she tries to concentrate on the good qualities that come with autism - honesty, uncompetitiveness, absence of spite.

Embracing Neurodiversity allows you to stop looking for a cure because there isn’t one. I agree with the Autism Society of America that,

Most of the enlightened world knows that autism is at its root, genetic, and therefore by definition it is not something that can be considered “curable” or a “disease.”

Giving up on a cure is not the same as giving up on your child. In fact it can help you to take a more balanced approach. It is easier to reflect on your child’s strengths as well as their difficulties and take up Lorna Wing’s advice that,

an autistic child can only be helped if a serious attempt is made to see the world from his point of view.

Sometimes our biggest problem lies with other people. One mother gave me permission to quote something she wrote in an email about autism and acceptance.

I think that it’s a bit insulting sometimes for people, especially family and friends, to try to give me information about how to make my son be a ‘bit less autistic’. It makes me think they want a short-cut to make him more acceptable. I’d prefer it if they tried to connect with him and enjoy him as he is. Then they’d really be able to help him to progress.

This is the essence of Neurodiversity. First accept the difference. Then find ways to work together. And it is not all about problems either. We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.

That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem. You try and offer constructive criticism. They take it as a mortal insult.

If we accept somebody and work with their strengths we can help them to find ways of dealing with their problems that work for them. I spent a lot of time trying to solve my son’s problems and making choices for him. The turning point came when Dave, a clinical psychologist asked him to think about what he wanted. Prior to this my son had always been encouraged to meet other people’s demands and expectations. Dave was the first person to give my son explicit permission to put his desires before our expectations.

When does Neurodiversity give way to disability?

It is a common mistake to believe that neurodiversity is only for people who are “high functioning” or are “mildly autistic” or any other synonym for “not my child.” The argument goes that neurodiversity is all right for you. You can talk. You can write. You are intelligent. My kid is non-verbal, self-injures and needs constant care.

There is a whole set of problems that comes with being high functioning. People expect you to be normal or at least to act normal. So you expend a lot of mental energy pretending to be normal which leaves you wide open to stress related problems like depression, obsessive compulsive disorder and social anxiety disorder. You may be paralyzed by panic attacks or have uncontrollable bouts of anger. This can get you in trouble with the law or trapped in the psychiatric system. Being high functioning is not a soft option.

Does the demand for tolerance and understanding mean ignoring children in distress, doing nothing about autism, denying the need for scientific research? Of course not. We support the need for decent peer reviewed research into the problems associated with autism. It is by no means clear what constitutes the core features that are fundamental to autism, and what are secondary factors. We just do not see any justification for seeing all a child’s problems as being down to its autism and imagining that there is a magic bullet to solve them all.

Who will speak for my child?

This is a real concern, especially for parents of children who are highly dependent on others. But we are all mortal and when we die who will speak for our children then? Neurodiversity is a way of thinking about human difference that has the potential to change the world for autistic people in ways that are comparable to the impact of the liberation movements for women, blacks and gays. When society speaks for my child, then I can die happy.

The National Autistic Society in the UK recently changed its constitution. We are no longer a parent led organization. Previously there had to be a majority of parents elected to our National Council. Now there has to be a majority of family members - parents, siblings and people with autism. Many parents of severely autistic children were worried that this dilution of control would weaken their voice as the only effective advocates for their children. Some were worried that high functioning autistics would take over the NAS and their children would be forgotten.

I pointed out at the AGM that in my experience autistic people who were willing and able to campaign and hold office were concerned for the rights of all autistic people. They take Neurodiversity seriously and value everyone on the autistic spectrum. The parents of children with Asperger Syndrome were far more likely to push the NAS down the path of providing mainstream support for their children at the expense of those who needed more expensive care and protection.

Neurodiversity, like freedom, is indivisible. And its benefits are being seen within the NAS as the professionals in our care homes and schools strive to create mechanisms whereby all autistic people within our structures are able to self-advocate, make choices and exercise personal autonomy.

What does Neurodiversity mean for professionals?

By listening to autistic adults I have changed my practise in relation to the autistic children with severe learning difficulties in the special school where I teach. I no longer expect eye contact. Instead of demanding, “Look at me when I am talking to you!” I ask, “Are you listening?” When I speak to a child I give them extra time to process my words and formulate a response. If someone is acting strangely, instead of stepping in to prevent the behaviour I ask myself, “Why is he doing that?”
OK I am only human. sometimes I have bad days. I make mistakes. I mess up. So do the kids in my class. They make allowances for me. I make allowances for them. Some people do not get it. They think I am “letting them get away with it.” Yes, like they are being autistic on purpose.

The most important thing a professional can do is to help a person understand and accept that they are autistic and then decide what they are going to do about it. A lot of autistic people spend a lot of time trying to change themselves to fit in with the world as it is. It is important for autistic people to learn how to get by in this world. But they will not do that if we try to manage the way they think. I often say that we should not teach autistic people to manage their behaviour. we should teach them to manage ours. And between us we may make the world a bit more manageable for all of us.
What does Neurodiversity mean for autistic people?

I am a parent and a professional. I am not autistic and therefore would not presume to speak for autistic people. There are many who can speak for themselves. You can find a really good sample at the Autism Hub, a place where autistic people, parents and professionals meet with no distinction and anyone is welcome providing you share our respect for the condition of being autistic. We seek no fundamental alteration to this state of being but we do seek to intervene sometimes should the situation require it. And when we do intervene we should remember the words of a very wise person with autism, my son.

My autism is not a problem. It creates problems. But it is not going to go away. I want help with my problems not with who I am. I want you to offer support but do not try and change me into someone else.

Links

One mother’s story

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2006/05/08/hastor08.xml&sSheet=/health/2006/05/08/ixhmain.html

Autism Society of America

http://www.autism-society.org/site/News2?page=NewsArticle&id=8273&news_iv_ctrl=0

Autism Hub

http://www.autism-hub.co.uk/

June 25th, 2008 Posted by Mike | Autism rights, Neurodiversity, autism acceptance | 32 comments

Is autism a disease?

 A QUESTION

Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.

Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?

thanks………I wouldn’t know where to start looking.

The Integral

 SOME ANSWERS

Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.

KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?

TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.

KING: You call it disease?

TAYLOE: Yes.

Doctor Grinker in Unstrange Minds wrote:

 “In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]

Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development. 

In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.

This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)

Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.

Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?

The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology?  The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.

I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:

It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.

DISCUSSION

My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and  definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept. 

But that just mirrors our opponent, who has their own agenda and their own  equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.

Some examples:

• “What do you mean by disease?”

• “What do you mean when you characterize autism as a disease?”

• “By your definition is Down’s Syndrome a disease?”

• “Why is it important to you that autism is not a disease?”

• “What would it take to prove you wrong?”

In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.

Some more examples:

• If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?

• If autism is a disease of course we ought to try and cure it.

• Investigating the causes of autism is the same as wanting to get rid of all autistics.

• Saying I have a disease is like saying I am a disease.

Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of  life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.

The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy! 

A CONCLUSION

I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?

I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease.  All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.

It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.

A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,

“I’m sorry, Dad. I wish I could have been the boy you never had.”

Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.

April 27th, 2008 Posted by Mike | Autism, Neurodiversity, autism acceptance, politics, science | 32 comments

An open letter to David Kirby and Dan Olmsted about the Kathleen Seidel subpoena

Orac has written this open letter. Please spread it far and wide.

Dear Mr. Kirby and Mr. Olmsted:

You are both journalists. I realize that neither of you at present work for the traditional press and that both of you seem to devote yourselves mainly to blogging (Mr. Olmsted at the Age of Autism and Mr. Kirby at the Huffington Post), but I have to believe that you both still consider yourselves to be at heart journalists. That is why I am writing this to you and posting it publicly on my blog. If you’ve ever read any of my posts on this issue, you probably realize that I strongly disagree with your positions and that at times I have been quite harsh in my judgment of articles you have both written. I am, however, hoping that for this one issue, upon which (I hope) we can all agree that you will for the moment put that aside and consider what I have to say. I am appealing for your condemnation of what has been done to autism blogger Kathleen Seidel.

The letter continues at Respectful Insolence

I hope that Olmsted and Kirby respond. As Orac points out later in his letter, if a vaccine injury lawyer is allowed to silence his critics with a subpoena, government and industry lawyers will take note and journalist bloggers like Olmsted and Kirby could be next in line.

April 6th, 2008 Posted by Mike | Neurodiversity, journalism | 11 comments

Shoemaker’s subpoena is a load of cobblers

Kathleen Seidel’s Neurodiversity blog is an example to us all. She combines meticulous research with lucid prose.  Her writing is as good as or better than much that passes for investigative journalism today.  Now she has had to add the skills of a lawyer to those of a journalist in response to a subpoena from Clifford Shoemaker. This subpoena is so onerous and burdensome in its demands that it beggars belief, even in an overlawyered society like America.  

Kathleen is being subpoenaed to testify at the taking of a deposition in the case of Lisa Sykes et al versus the Bayer Corporation and to provide

All documentation  pertaining to the set up, financing, running, research, maintaining the website: http://www.neurodiversity.com that specifically relates to Lisa Sykes, her son, her lawsuits (NVICP and civil litigation, her church position, her family in general, her associates, her attorneys, her Citizen’s petition (FDA Filings and Court Filings) and her physicians. This shall include, but not be limited to bank statements, cancelled checks, online or offline donation documents, and tax returns. This to include the names of persons helping, paying or facilitating in any fashion these endeavours.

Whoa there!

1. Kathleen is not a party to the dispute between Sykes and Bayer.
2. She has had no contact with any of the parties to the dispute.
3. The content of her website will have no bearing on the outcome of the case which will be determined by the quality of the expert testimony brought to the case by both sides, not the sleuthing of a citizen blogger.
4. Nobody pays her to maintain Neurodiversity. She puts her own time and money into it.

It is obvious what Shoemaker is after. He is on a fishing trip to see what he can learn about Neurodiversity.com. Perhaps he thinks it is a front for Big Pharma and he can turn up something that will embarrass Bayer in court. He is only in it for the money and so cannot conceive how a private citizen  could put so much effort into a resource like Neurodiversity.com and have the moral rectitude to blog about the abuse of autistics by quack practitioners and their attempts to use the courts to justify their behaviour and all with no thought of personal gain for herself.

But Shoemaker is not just fishing. It seems his intention to bully and intimidate Kathleen into silence. Because the subpoena asks for more, a lot more. Kathleen describes it thus in her motion to quash,

The subpoena commands production of “all documents pertaining to the setup, financing, running, research, maintaining the website http://www.neurodiversity.com“ – including but not limited to material mentioning the plaintiffs – and the names of all persons “helping, paying or facilitating in any fashion” my endeavors. The subpoena demands bank statements, cancelled checks, donation records, tax returns, Freedom of Information Act requests, LexisNexis® and PACER usage records. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any “religious groups (Muslim or otherwise), or individuals with religious affiliations,” and any other “concerned individuals.”

Could any of this be connected to the fact that 4 hours before being served with this subpoena Kathleen published a blog post The Commerce in Causation which enumerated legal costs paid to Mr Shoemaker by the National vaccine injury compensation Programe to the sum of $584,449.28.

Kathleen ends that post thus:

These nonprecedential decisions reveal only a portion of Mr. Shoemaker’s VICP income since June 2006; they pertain to fee requests to which HHS and the presiding Special Master raised few objections. In contrast, published decisions on fees and costs offer a more detailed view of controversies calling for a comprehensive judicial analysis, and of the billing practices of petitioners’ attorneys.

to be continued

Could the real purpose of this subpoena be less to do with what Shoemaker thinks Kathleen might know about Sykes versus Bayer and more to do with what he thinks she might know about him? Whatever his motives, he has managed to spread his name  accross the Internet to almost universal opprobrium.  Anti quackery blogs like Holford Watch, Science Bloggers, Autism Hubbers and legal blogs like the aptly named Overlawyered are all chiming in on Kathleen’s behalf. I Speak of Dreams is trying to keep a comprehensive list of them all. The total currently stands at 52.

Some voices have remained silent. Can you imagine the reaction in some quarters if the Department of Justice decided to subpoena David Kirby to discover who was leaking court documents to him in the Poling case. By his own admission

The unprecedented concession was filed on November 9, and sealed to protect the plaintiff’s identify. It was obtained through individuals unrelated to the case.  

As a fellow blogger it ought to be in his interest to support Kathleen against this abuse of the legal process. How about it, David?

April 5th, 2008 Posted by Mike | Autism, Neurodiversity, journalism | 13 comments