New autism campaign to be launched in Dublin tomorrow.

international | health / disability issues | news report

Wednesday January 11, 2006 20:54

by Kathy Sinnott

The absence of formal data on the incidence of autism throughout the EU is about to be addressed.

We have Roman records of Down Syndrome and medieval descrptions of cerebral palsy. Medical historians can find no trace of autism.

A few years after the end of the Reign of Terror in Paris, a boy wandered out of the woods on the outskirts of the city. He was so unusual that people thought he was raised by wolves. Doctors came from great distances to study the boy because there was no precedence for his condition. Reading the contemporary accounts, he clearly had autism.

Interestingly, a feature of the French Revolution in post-Terror Paris was that tradition was discarded. In medical circles this meant that doctors outdid each other to embrace everything and anything that could be considered new and progressive, including Jenner vaccination.

The next child we find in the literature was a little boy on the east coast of the United States in 1919. Again he attracted widespread interest because he was seen as one of a kind. Seven years before the United States Public Health Service had been launched with lofty aims like getting rid of quackery and witchcraft and establishing immunisation programs. In the USA in the 85 years since, autism first increased to the point of being named and recently was declared a 'national epidemic'.

There are many effective medical and nutritional interventions for autism. There are also important educational and therapeutic approaches. Some parents and professionals are open to them all, others are invested in one or two. Still others put all their faith in custodial care and think that people with autism are beyond help.

There is also wide variation on the causes of autism. This generally divides into those who point to genetics and thsoe who point to environment. There is great controversy in everything to do with autism.

I have learned a lot about the difficulties we at home are experiencing in reaching authorities at both EU and national level and the difficulty in convincing them to accept their responsibility for people with autism and the 'epidemic' itself. As a new member of the Environment Public Health and Food Safety committee in Brussels, I asked the commission about the atuism epidemic and its plans to tackle it. The response stated that there was 'no comprehensive or comparable data at EU level concerning the incidence or prevalence of this condition'. I, of course, went crazy but, speaking to the official after I discovered he was not being dishonest, he explained that my question had shaken them - that 'no-one had ever mentioned autism to the health commission before'.

The position was clear. Autism is still officially considered a rare condtion and not even considered a disease because of the lack of reliable and consistent data in respect of the incidence and prevalence of ASD. And in EU terms and consequently in terms of the policy of many European countries, that reliable data must come before we will see our demands fulfilled for earlier diagnosis of children, improved accessibility to appropriate treatments and services, supports for families caring for people with autism, etc. That data must be in place before we will se an end to the autism 'epidemic'.

Providing the necessary European data therefore became a primary goal and gratitude is due to Dr Alvaro Ramirez for agreeing to a full commitment to the strategy and within it to the development and leadership of an autism project.

Our proposal to establish the European Autism Information System has been sanctioned by the EU Commission and will be launced tomorrow in Dublin. The central aim of the project is to establish an agreed information system to record ASD data. This data, recorded in common format across the EU will provide the strongest, most robust evidence available to determine both the prevalence and the financial burden of the disease. It will also provide a means of monitoring trends. After the completion of the initial project this sytem can be further developed as a full scale EU surveillance system.

When the commission realises the numbers, the cost and the detriment to the lives of so many young people, hopefully all else will follow.