AUTISM CYMRU'S SUCCESSFUL CONFERENCE IN CARDIFF - FULL REPORT BY ADAM FEINSTEIN|
By ADAM FEINSTEIN
CARDIFF, Wales: More than 500 delegates attended Autism Cymru's hugely successful first international autism conference in Cardiff from May 17 to 19, at which some of the world's leading experts on the condition took part.
The conference was officially opened by Ivor Lightman, chairman of Autism Cymru; Dame Stephanie Shirley, whose Foundation provided a start-up grant allowing the establishment of Autism Cymru; and Jessica Kingsley, the publisher, who sponsored this conference.
Jane Hutt, the Welsh Minister for Health and Social Services, opening proceedings, told delegates that "conferences of this kind offer such a valuable opportunity to share experiences, to hear about what is happening around the world."
She praised Autism Cymru for "taking action and advancing general awareness of autism."
The Minister said that her aim was for people with autism in Wales to receive life-long support. She pointed to December 4, 2002 as a "very important date" - it marked both the announcement of a national autism strategy for Wales and the launch of this website, Awares.
Hutt continued: "We are trying to achieve 'joined up' government, with education, social services and health departments working together ... in a multi-agency, collaborative approach to delivering services. The access must be equitable across Wales, and there will be a person-centred approach in assessing need."
She outlined the various expert working groups which had been set up to identify care pathways and prevalence, as well detailing the work of an education task group.
Ros Blackburn, a highly articulate British woman diagnosed with autism at just over one year of age, entertained and informed her audience with invaluable insights into her condition.
"I happen to be blessed with autism," Ros began. "I was diagnosed as severely autistic 34 years ago. What are the differences between autism and Asperger's syndrome? There are endless differences. It is almost easier to pinpoint the similarities. People with either condition get very, very anxious. But a big difference is that, unlike individuals with Asperger's, I do not get embarrassed. I can act anything, and have been beautifully trained in a lot of areas. I have been taught to shake hands, but when a child put his hands out once, I shook it instead of offering sweets. After that, whenever a hand came out, I would rush off to in a sweet to put in it. I had to learn more specific rules. I assumed they knew I had sweets in my hands because I knew it.
"I learnt to lie - the hardest thing of all for me. I am meticulous, but I have learnt to say 'Nice to meet you' even when I would really rather be trampolining!"
Ros pointed out that the difficult area for her was "the social stuff ... I don't feel the slightest bit nervous giving these talks in front of hundreds of people. The frightening part is standing around talking at the buffet, checking into the hotel, coming into this building for the first time. This talk is structured and predictable, so much more so than the buffet reception. It's on my terms now. I can talk about what I want to. I also know where the door is - I can leave whenever I want to.
"I am in control, ultimately - and this is a key point. The word 'control' is almost synonymous with autism. We are forever manipulating, putting objects wherever we want them. We are control freaks."
Ros noted that many people with autism did not have an intellectual learning disability. "This is very different from mental retardation. I cannot dress independently, I cannot cross the road or cook food independently. But intellectually, I could pass a maths exam. Whereas my brother does have a learning disability.
"So why, if I can be shrewd, is my bracket so limited? Maybe it is because I cannot work out what is going on in the world around me. I can't piece sensations together. How often are people with autism given the time to put all the pieces together? Virtually never! This has nothing to do with the intellect. I just need masses of times."
Like most people with autism, Ros has problems with transitions. "Think of the massive transitions involved in eating a meal. The taste, the temperature, the noise of the food inside my head, the texture, the shapes and patterns of the food. I do not have a sense of smell. I am severely dyspraxic, so it takes me a very long time to eat with a knife and fork.
"I have found various coping strategies, ways of being in control. I indulge in routines. Do we allow autistic children to indulge in these routines? We have to apply common sense.
"In so many ways, there is nothing strange about autism. We are all human. It is true that a huge part of your role as professions or carers is to impart information. But even more important is to equip people with autism with coping strategies. Expose them to lots of different situations. Help them see the whole, rather than the detail (I still have difficulties with this). I am also a word 'junkie' - it is non-verbal communication I find hard.
"Behaviour is not the issue in autism, as far as I am concerned. Education depends on the assumption that people go down the same channel - whereas more often than not, people with autism go off on tangents. Never make excuses for autism - that is utterly futile and a waste of learning opportunities."
Ros concluded: "It is not easy having autism. The choices I now have available to me are there because my parents did not let me shred paper or smear stuff on the floor."
Professor Christopher Gillberg, professor of child and adolescent psychiatry at the University of Gothenburg, Sweden, who also works at St George's medical School in London, began the first of his two talks to the conference, on the neurobiology of autistic spectrum disorders, by declaring that he felt the reason for the higher prevalence of autism today was due to "better awareness, changes in diagnostic criteria and improved services."
He said the current autism prevalence rate was about 0.2 per cent. Autism was associated with learning disability in 15 per cent of cases, not 80 per cent as we used to think, and associated with epilepsy in 15 per cent of cases, rather than 35 per cent of cases in classic (Kanner) autism.
Dr Gllberg said that there was high rate of pre- and peri-natal risk factors for autism, although we still did not know what these were.
He pointed out that the fact that autism was more likely if many tuberous sclerosis lesions were found in the temperofrontal regions of the brain showed that "there must be something in this part of the brain involved in autism."
He also noted that herpes encephalitis could lead to classic symptoms of autism even in previously unaffected individuals.
Dr Gillberg said that genetics played a major role in autism. Apart from the twin studies findings, "first-degree relatives have increased rates of affective disorders (depression, bi-polar disorder, obsessive-compulsive disorder and broader phenotypes such as attention-deficit hyperactivity disorder (ADHD) and Tourette's.
He mentioned that genes possibly involved in autism had been found on chromosomes 2,6,7,16,18,22 and the X chromosome. He also discussed the intriguing case of the long arm of chromosome 15, which is implicated in both Angelman syndrome and Prader-Willi syndrome. Angelman is very strongly associated with autism. whereas Prader-Willi is not - and yet they are both located on the same site and both do feature repetitive behaviours.
Dr Gillberg said that many children with autism had large heads. "This sub-group with macroencephaly should be looked at in much more detail. It could be that children with autism do not shed dysfunctionial synap