XI Autism-Europe Conference

“XI Autism Europe International Congress”

Linda, Calvin, Carly and David attended the eleventh European congress. These are held every three years and there were 1,750 attendees from 60 countries extending way beyond Europe.

Day 1

After the opening ceremony here is a summary of the talks that Linda went to.

David, Calvin and Carly went to some other sessions and Calvin also reviewed the two films that were showing at the congress for further details check Calvins twitters account (insert link) and Axia’s.

Carly spent much of the time on our exhibition stand speaking to people from all over the world including Malta, Italy, France, Cameroon, Russia. There was a lot of interest in the Film Society with people we didn’t know telling us they had read the reviews and visited our website too. Our pen display was once again the best!

The first speaker Professor Volkmar from Yale University within the United States of America delivered a lecture on Autism today: what we do and don’t know. He traced the history of Autism right up to DSM-5 but we were saddened to hear that the new diagnostic criteria was causing people who would previously have got the diagnosis Asperger Syndrome to not receiving any diagnosis at all and apparently there had been discussion about taking the diagnosis away from some individuals although thankfully this did not happen.

The next speaker was Dr Vermeulen who is always an enjoyable speaker to listen to and he focused on happiness and wellbeing as being the only really important outcome measures.

Professor MacKay then spoke about Autism Practice today and where are the gaps. Interestingly he had conducted an extensive study looking at prevalence rates of Autism (how many people there are) arriving at a figure of 104 every 10,000 people. He also looked at how many of those individuals also had an Intellectual Disability. When I was training it was suggested that 80% of people with Autism had an Intellectual Disability. More current thinking suggested it was 50/50 but Professor MacKay’s study suggested a prevalence rate of 32%. The gaps he highlighted will be all too familiar to you in the group. Mental Health problems were much more prevalent for example 25% of adolescents with Autism engaged in self harming behaviour compared with 2% of the neurotypical population. There was also a recognition that very few people have the therapeutic skills to work with people on the spectrum and we are grateful to Elspeth for joining us as our Head of Therapy so we can now offer more e tensile therapeutic input.

Waiting lists for diagnosis are far too long with many, many people waiting over two years. Again without wishing to brag I would like to offer my thanks to all of the team for getting our waiting list down to 4 weeks.

Other major gaps were accessing leisure and recreation and transport issues both in having a drive licence, being confident to drive and being able to access public transport. Transport mobility is crucial for independence, employment and so on. Whilst there have been many advances for people with physical and sensory disabilities such as wheelchair space and tannoy systems, the speaker said do we even know what questions to ask about transport and Autism.

The next speaker Gunilla Gerland focused on being a professional in the Autism field what the most important tools are and how to use them. She was diagnosed with Asperger Syndrome in her twenties but felt this was not the correct diagnosis and she came back to that at the end. However, this led her into working with people on the spectrum in Sweden. She spoke about visual aids being a useful tool but it is very rare they are used with people who do not have a learning disability. This might be something members of the group would like to discuss to see whether we should be using more visual aids or not. One of the things she said doesn’t work was nagging individuals when they really don’t understand. At the end she spoke about her son who was developing typically until the age of 8 when he suddenly showed signs of a number of developmental differences. However his Paediatrician identified it as PANDAS which stands for Peadriatic Auto Immune Neuropsychiatric Disorder which is caused by a streptococcus infection and she realised then that she had had a streptococcus infection at the age of 2. If this infection is treatment the developmental differences disappear.

Professor Pellicano then spoke about Research frameworks beginning with speaking about a social conformity experiment that was carried out in the 1950s with neurotypical people where people agreed with the researcher conforming exactly what they were asked to do even though they could see it was wrong. Recently the same study was conducted on children with Autism. They did not conform anywhere near as much as the neurotypical people but what was a positive finding was that these children where independent thinkers and did not conform when it was obviously wrong. The researchers said the Autistic response was the wrong one even though in my opinion it was the right one. This style of thinking as shaped much of the Research agenda.

Is the Research making a difference to the lives of people on the spectrum? The focus of U.K. Autism funding is on biology, brain and cognition (56%) with only 1% on Research on the place of Autism in society. She carried out a survey of 1,600 people including Autistic people, families and professionals and they asked them what their priorities were. Their priorities were how Autistic people think and learn, how can services best meets the needs of people with Autism and learning life skills. This is in stark contrast to what is actually being researched.

Co-production of Research is a rare occurrence. Some of you in the group will be familiar with the term co-production, for example, when we tried to co-produce a response to the Autism strategy.

There was then a discussion about the terms we use, for example, Autistic person, person with Autism which has been a discussion we have had at the group and one of you that heard Luke speak will know his preference.

The final session of day one was a panel discussion composed of non-Autistic and Autistic people speaking from personal and professional perspectives on cure versus acceptance of Autism. A challenging debate occurred and this might be something the group would like to engage in.

Day 2

Calvin went to a presentation on Employment. He Sophie about an interesting project in Shell. Carly will also be posting details of an I.T company in London actively recruiting people on the spectrum and they are opening up a branch in Manchester in about a year’s time.

We gave out pens to people from Russia, Italy and Japan today and made contact with a company providing “stress-free” holidays in Greece for families with children on the spectrum and adults on the spectrum. Again we will be posting details on the website.

We visited the posters of which there were over 300 taking down details that ignited be of interest.

Calvin and I went to an excellent workshop on women on the spectrum and eating disorders given by David Vagni from Italy. He began by distinguishing feeding disorders such as PICA (eating non-edible things) and/or eating restricted diets often seen in children with Autism from eating disorder such as Anorexia Nervosa and Bulimia.

It looked at commonalities between the two and he questioned whether the Autism spectrum traits seen in eating disorder were a cause or a consequence, for example, Mentalising (Theory of Mind), however, there is a complicating factor that women are under diagnosed with Autism Spectrum Disorder. He made contact with the eating disorder ward at a hospital in Rome 71 participants came forward. However, four of those had to be discounted as they had only gone to the ward to get a free diagnosis of Autism Spectrum!

Of the remaining 67 participants with an eating disorder 22 of them were diagnosed with Autism Spectrum Disorder but there was no significant difference between the different types of eating disorder. The two things distinguishing the women with eating disorders and the women with Autism Spectrum Disorder were a lack of interest in topics most people consider interesting and sensory overload. The women also became more rigid in their thinking after developing an eating disorder. David went on to talk about some other prelim army findings regarding the difference between the women with Autism Spectrum Disorder and Eating Disorders and those were just Eating Disorders. The women on the spectrum showed more asexuality and more gender fluidity and he wondered if the eating disorder is a way of these women taking back their body image and ended the talk saying sensory sensitivity issues were a major factor and needed to be taken into account in any treatment programmes.

The first speaker after lunch was Dr Al-Attar and he focused on links between Autism and Terrorism: Fact or Fiction and there is no Research to support either hypothesis.

David went to a workshop that looked at some of the preliminary findings from Professor Francesca Happe’s Research. Some of you may remember one of her PhD students who came to talk to us at the group and I know some of you have taken part in the Research. Although it is early days it looks as if Autism may be a protective factor against Dementia.

We all attended the Gala Dinner held by the NAS that evening.

Day 3

It’s the last day and all of our pens have gone! We all attended the presentation on Pathways in and out of problematic sexual behaviour. Some of you may have followed Calvin’s tweets. There was reference to how some behaviours could be misinterpreted with devastating consequences. All the panellists were very much speaking from an American Forensic perspective with some making sweeping statements without backing it up with peer reviewed research evidence.

The final session began with Professor Grinker looking at cultural origins and futures of Autism Spectrum Disorder. He was speaking as both a researcher and father of an Autistic daughter. It was a very thought provoking talk looking at the historical origins of the constructs of Autism and the need to look at Autism in the context of an anthropological perspective moving away from a deficit model.

Went Lawson spoke about ageing using his own personal experiences as well as his experiences as a Psychologist. It reminded me of the interesting and for some of us emotional discussion we have had at the Autism post-diagnostic support group where various members spoke about Autism as they were growing older and younger people talking about what their Autism meant to them. There does appear to be increasing evidence that the Autistic brain may continue to increase in plasticity in contrast to the neurotypical brain making the possibility of Dementia less likely.

The closing ceremony focused on working together for a better future for Autistic individuals and their families.

The next congress will be in 2019 in Paris and Axia ASD Ltd will be going!

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