Action For Autism

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