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Autism Speaks Being Heard in Europe

Autism Speaks staffers meet with members of the Dutch autism research community, Nederlandse Vereniging voor Autisme and the Health Council of the Netherlands

Posted by Autism Speaks staffers Simon Wallace, Ph.D., director of scientific development for Europe; Dana Marnane, vice president of awareness and events; and Daniel Lightfoot, Ph.D., director of the Autism Tissue Program  

Over the last week, we visited three European countries to explore partnerships with researchers and autism organizations. In particular we’ve been discussing Autism Speaks’ efforts in the areas of awareness, communication, our Global Autism Public Health (GAPH) initiative and the Autism Tissue Program (ATP).

Pulling our suitcases behind us, our first stop was in Stockholm, Sweden, where we met with Prof. Sven Bölte, of the Karolinska Institute for Neurodevelopmental Disorders, to discuss establishing an autism brain bank in Sweden.

As highlighted in a recent Nature article, one of the best ways for scientists to understand how autism affects brain development is by looking directly at the tissue. Just as diabetes researchers must study the pancreas, scientists studying developmental neurological conditions such as autism must study brain tissue.  Already, research has revealed altered cell organization in brains affected by autism. This research can continue and progress only by increasing donations of this precious resource.  Autism Speaks is working with its partnering brain bank in the UK to expand collections into other European countries.

From Sweden, we traveled to London and shifted our focus from scientific research to autism awareness. In recent years, Autism Speaks has led global awareness efforts through initiatives such as our Ad Council campaigns, World Autism Awareness Day, GAPH and Light it up Blue. The measurable success of these efforts has led to expanded partnerships with European organizations. During our London visit, this crystallized in a meeting with European parent organizations and other autism advocates.

Present at the meeting were representatives of Autism Europe (which includes over 80 member associations), Autistica, Autism France, the Celtic Nations Autism Partnership, London’s Centre for Research in Autism and Education, the Hungarian Autism Society and Irish Autism Action. We spent the day learning about each other’s campaigns and brainstorming ways to increase global autism awareness. Everyone was familiar with our Light it Up Blue initiative and were actively planning their increased participation in the year ahead. The overall feeling was that, together, we can accomplish so much more. We will continue exploring this fruitful partnership in the months ahead.

Next it was a short hop to Utrecht, in the Netherlands, at the invitation of Nederlandse Vereniging voor Autisme (NVA), the country’s national autism organization. Its staff and members were eager to learn more about GAPH and our international awareness initiatives. Our team also took this opportunity to explore the development of a brain tissue bank in the Netherlands, to match our efforts in the UK and Sweden.

A highlight from this visit was the Netherlands National Autism meeting, the first national meeting of Dutch autism families and their research community. As special guests, we heard about Dutch research examining the relationship between genes and behavior, autism prevalence, nutrition, the elderly and autism, enabling technology and an intervention for young people with autism to help them understand sexuality. Over the next few weeks we will be inviting some of these researchers to describe their studies on our science blog.

There is much we can learn by working together with our European partners, and our visit was an important step in forging closer collaborations involving science and awareness. Goodbye for now; hejdå and dag to our Swedish and Dutch friends!

 

  1. ML
    November 2, 2011 at 11:04 am

    Unfortunately, the focus is still the brian in a genetic-psychiatric paradigm, without the consideraiton of the concomitant medical problems to the ASD diagnosis. These conditions affected my son´s life quality enormously and they were present in high number and severity.
    Without a shift in the focus to the gastrointestinal, metabolic, biochemical, mitochondrial, nutritional, immune and autoimmune conditions and the role of chronic viral/fungal/parasitici and bacterian infections in different subgroups of children with ASD, the translation to practical help will take years to be effective. The need of a biologicaly centered, psicopedagogic approach considering the vulnerability in ASD to xenobiotics, is urgent and unrecognized , with an enormous amount of anecdotic evidence considered meaningless. MEanwhile we are left, around the world, almost to our own.

    • Sarah
      November 3, 2011 at 10:22 am

      Hear, hear.

  2. Katie Wright
    November 2, 2011 at 7:37 pm

    I agree. I find these reports so depressing. It feels as if nothing is changing. Talking about the genetics of autism in Europe id doing nothing to help my child.

    How about AS science coming to the next ARI conference to talk about biomedical science and get feedback from parents?
    How about the Autism Treatment Network actually interacting with the public they exist to serve? How about investing real resources in biomedical clinical trials, not just behavioral ones?

    If I hear one more thing about brain tissue I will scream. How about doing some scientific research to help my son while he is alive?

  1. November 22, 2011 at 4:57 am

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