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”.
- 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.
- 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.
- 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)
- 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. Autism Hub is a not for profit grouping of autism bloggers from around the world funded entirely by its members.
- We are the only online organization that brings together parents, practitioners and autistic people based on the principles of neurodiversity and autism acceptance.
- 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.
- We welcome evidence based support for autistic people and research that addresses the hopes and aspirations of autistic people and their families.
- 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
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Clarke J, van Amerom G. Asperger’s syndrome: differences between parents’ understanding and those diagnosed. Soc Work Health Care. 2008;46(3):85-106.
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Uta Frith. 1991 Autism and Asperger Syndrome Cambridge University Press,
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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
