What in the World is Going On?
October 2016 Edition
By Maureen Ben
nie
Member,
Autism Calgary Community
Director,
Highlights from the Autism Europe Conference
September 16 – 18, 2016
Edinburgh, Scotland
I had the opportunity to attend to the Autism Europe Conference in Edinburgh, Scotland in September. This conference happens once every 3 years and is hosted by a European country (2019 will be in Paris, France). This sold out event had 1750 delegates from 60 countries attending. There were 300 speakers from across the world sharing advances in autism knowledge with researchers, professionals, autistic people and their families.
The theme of the conference was happy, healthy and empowered. The presentations highlighted this theme. I attended sessions on anxiety, happiness, ageing, palliative care, gender identity, depression, movement therapy, housing issues, deprivation of liberty, culture origins, and premature death.
The conference venue, the Edinburgh International Conference Centre, was honoured with an Autism Friendly Award at the event, after the venue made changes to increase its accessibility and provided awareness sessions for staff. It is only the second building in Edinburgh to achieve the Award, which was first granted to Scottish Parliament in May 2015.
The opening ceremony featured the talented Sophia Grech, an opera singer with Asperger Syndrome who has a successful international career. I spoke with her at length after the performance and her story is remarkable. She did not read or write until the age of 12, walked hunched over due to extreme shyness, and hated every minute of school. Sophia discovered at age 14 that she had a voice after hearing an opera singer on TV. She said to herself, “I can make that sound.”
She began lessons at the Guildhall School of Music in London, entering with no musical knowledge. Her transformation is remarkable, her story – inspirational! Singing has changed her life and given her great joy.
Peter Vermuelen from Belgium was one of the opening keynote presentations. His Focus on Happiness and Well-Being challenged us to think about autism more in terms of similarities than differences. He coined a new term – neuroharmony – bringing all of the different brains together and finding the like-mindedness.
We have to redefine our neurotypical criteria of what happiness and success looks like. With the assessment tools that we use, people who are struggling often have high outcomes if they live independently and have a job. People in a supported living situation often score poorly on such assessments even if they are happy and healthy. It is happiness that leads to successful outcomes. If a person feels well, they are more flexible, adaptable, and have higher cognitive function.
We have to avoid forcing ASD people into neurotypical concepts of happiness. Find out what makes people feel good. Autisme Centraal uses the Autism Good Feeling Questionnaire and an assessment of sensory preferences to support happiness. In regards to an autism friendly environment, we have to help people with ASD face challenges and get over obstacles as not all environments are willing to make changes to be autism friendly.
Peter’s advice – for challenging situations give control to the people with autism in order to develop tools to cope, give clarity and predictability, and the autistic person needs be kind and grateful (which leads to happiness), making a person wanted and not just tolerated.
Dr. Tommy MacKay spoke about the gaps in autism practice today. These seem to be universal problems. The gaps are – transportation, leisure and recreational activities, diagnosis and criminal justice.
Swedish lecturer Gunilla Gerland spoke about being a professional in the autism field. Having grown up with Asperger syndrome in an unsympathetic environment, she had great insights. She wrote a book called Secrets to Success for Professionals in the Autism Field. Gunilla talked about essential tools such as visual aids and how we don’t use them enough with very verbal people. We also have to be ethical with them and not steer people.
We have to look at a person from the developmental perspective. For example, Theory of Mind is delayed so a 15 year old can be like a 3 year old in some respects.
Challenging behavior is normal in young children. As a person ages, they need to become motivated not to engage in challenging behavior.
Professionals can’t nag. They have to build trust with the people they are supporting. If you overdraw on the “trust account”, you will have trouble. When the trust is strong, Gunilla says, “offer him a mile and he’ll only need an inch”. Communication must be transparent. Tell a person what is going on and remember that people with autism are adept at picking up on nonverbal communication. Your fear and anxiety can be felt.
Empower people to make informed decisions by giving the possible outcomes of a decision they want to make. We don’t always know what is best for a person and have to let people make their own mistakes. This is how we learn and grow.
To learn more about being a professional in the autism field, read Gunilla’s book. She also has a Professional Reflection Tool in her book, a practice everyone should be following in order to improve their practice and self-assess.
The most upsetting presentation was Dr. James Cusak’s presentation Tackling Early Death in Autism. Dr. Cusak is on the spectrum himself and part of the research team at Autistica. In March of 2016, his team released a report on the high mortality rates of people with autism. Those with autism and an intellectual disability were 40 times more likely to die prematurely that the neuroptypical population and among those with Asperger Syndrome, suicide rates are 9 times higher. Now, if these statistics were true of the neurotypical population, there would be an international outcry. While this report gained international recognition, little has been done about it.
Autistica is trying to raise 10 million pounds to research why this is happening and how it can be prevented. They have started the Lifesaver Campaign. I encourage everyone to have a look at it as we have to help this team so that our loved ones have a long, healthy life.
A concept that challenged my thinking on independence was interdependence. We have this construct that once a person turns 18, they are capable of making their own decisions and unless a parent has legal guardianship, we are often cut out of discussions around an adult’s health and well-being. Jacqui Shepherd from the University of Sussex discussed interdependence – support is needed from family members for a longer period of time during transition. Learning differences means there is more reliance on parents, and parents need to be involved in post-secondary education.
The Deprivation of Liberty panel discussion opened my eyes to a major issue around those in care who may not have a voice in their decisions because of intellectual disability, mental health issues or being nonverbal. Who is in control in hospitals and care homes? How are decisions being made?
One document all parents and organizations need to be aware of is the United Nations Convention on the Rights of Persons with Disabilities. These are the principals that should be governing policy. A person with a disability has the right to liberty and security. Practices have to be associated with best interests of the person. As best we can, we have to interpret a person’s will and preferences.
In regards to perceived danger, a person must have the freedom to take risks. There has to be equal protection, accessibility and procedural accommodations to aid in understanding.
Evelyn Friedel, a French lawyer and parent of a nonverbal daughter with autism, was the most impressive on this panel discussion. One of her great achievements is she lodged a collective complaint before the Council of Europe, denouncing the violation by France of its international commitments under the European Social Charter. The decision, rendered in 2003, stated that France had failed to fulfil its educational obligations towards persons with autism. Due to this decision, France implemented 3 dedicated plans for autism.
These are just a few highlights from this conference. There is far more to write about, but I will leave you to ponder the points I have covered. I encourage you to visit the conference website and have a look at the topics, presenters, presentation slides, and articles. In Canada, we need to be on this level of discussion and plane of thinking. If we don’t put happiness, health and empowerment at the top of the agenda, persons with autism will not be able to live their lives fully. We have a great responsibility and have to be up to the challenge.
These are the highlights of what in the world is going on in autism for October 2016.
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