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A Stakeholder View of IMFAR 2013

 

Posted by Autism Speaks Executive Vice President for Programs and Services Peter Bell.

For the second time in its 12-year history, the International Meeting for Autism Research (IMFAR) was held outside North America in San Sebastián – also known by its Basque name, Donostia. This idyllic town is located on the Bay of Biscay in Spain's Basque Country.

“Why host the world’s largest meeting on autism research in such a remote location?” The answer is two-fold. First, the region is known throughout Europe for providing significant support and services to people of all ages with autism spectrum disorder (ASD). The second and more salient reason is Joaquίn Fuentes, M.D., who served as this year’s IMFAR meeting chair. Five years ago, Dr. Fuentes, a child and adolescent psychiatrist specializing in autism, proposed that the International Society for Autism Research (INSAR) have the meeting here. He spent the last three years preparing to make it the most memorable meeting ever.

I think he was successful.

Spain celebrates autism
To heighten the local community’s awareness about autism and the importance of IMFAR, the local and national organizing committee created DONOSTIAutism. This yearlong series of activities provided context about autism and its role in society today. In April, many Spanish landmarks participated in our Light It Up Blue campaign. These buildings included the Kursaal Congress Centre where the IMFAR meeting took place. (See photo above.)

The DONOSTIAutism effort culminated on May 1 with the annual IMFAR pre-conference meeting. This included a special course “Autism: Innovation and Social Capital,” supported by several local organizations including the Basque Foundation for Social and Health Innovation, the Regional Authority of Gipuzkoako and the private foundation Inbiomed. More than 600 people attended, from Spain and across Europe. Around half were self-advocates, parents and other lay members of the autism community. The other half included professionals from Spain’s health, education and social services. The course was given in English with simultaneous translation in Spanish, Basque and French.

One of my personal highlights of IMFAR 2013 was a special concert performed by the Basque National Orchestra on Wednesday evening to celebrate the opening of IMFAR 2013. My favorite piece was a “Suite Sinfónica” from the movie the Spanish-made film “The Impossible” (Lo Impossible). 

Another special feature of the concert was the inclusion of James Hobley, a talented 13 year old dancer from England who has autism. He has been featured on Britain’s Got Talent. A truly memorable and inspiring evening.

Let the science begin
The scientific portion of the meeting commenced with more than 1,800 registered attendees. As always, it amazes me to think about how many scientists devote their careers to helping us understand autism today versus ten years ago. They are passionately committed to finding out how autism develops, how we can treat and support affected individuals and where we need to go next to help those who live “autism” every day.

As I scanned the crowd, I wished that all of my fellow parents and friends with autism could be here to experience this gathering. It always fills my heart with a sense of hope and gratitude.

Researchers presented more than a thousand scientific abstracts at IMFAR this year. Due to strong interest and space limitations, the Program Committee had to turn down almost a quarter of the applications they received! That’s quite unusual but indicative of the improved quality that we’ve experienced in the field of autism research.

Ensuring the interests of stakeholders

Four years ago I was invited to chair a new committee of the INSAR board called the Community Advisory Committee (CAC). Its purpose is to ensure the stakeholder community is well represented and positively contributes to the success of the Society and its annual meeting. By “stakeholder” I mean families and individuals direct affected by autism and their supporters.

For example, we actively promote the following:

* stakeholder participation in all facets of the annual meeting

* inclusion and consideration of stakeholder issues in autism research

* volunteer opportunities at IMFAR for individuals and families affected by autism

* comfort, accessibility and feeling of belonging for stakeholders at all INSAR functions

In 2011, at the request of the CAC the INSAR board established an Advocate of the Year award to honor community members and advocates who have increased our ability to carry out autism research. The first recipients were the founders of Cure Autism Now (Portia Iversen and Jonathan Shestack), the National Alliance for Autism Research (Eric and Karen London) and the Autism Research Institute (Bernard Rimland.). In 2012, self-advocate and author Temple Grandin, Ph.D., received the honor.

INSAR “Advocate of the Year”
This year’s INSAR Advocate of the Year was Dame Stephanie “Steve” Shirley of England. A successful entrepreneur turned philanthropist, Dame Shirley is well known in the autism community as a passionate advocate and parent. Sadly her son died from epilepsy in 1998. She was an early member of the National Autistic Society, founded Autistica (previously Autism Speak UK). She also initiated a number of pioneering projects including Kingwood, a long-term care facility for adults with autism, and Prior's Court, a residential school for children with autism, to name a few.

Community Stakeholder Luncheon
On Day 2, the Community Advisory Committee hosted its annual luncheon, sponsored by Autism Speaks. Around 80 stakeholders attended. Speakers included Maureen Durkin, Ph.D., of the University of Wisconsin-Madison. Dr. Durkin discussed autism epidemiology and the importance of prevention, participation and inclusion. Irva Hertz-Picciotto, Ph.D., of the MIND Institute at the University of California-Davis discussed environmental influences on autism risk. Anat Zaidman-Zait, Ph.D., from Tel Aviv University presented findings from her study on parental stress factors. Finally, INSAR President Helen Tager-Flusberg, Ph.D., of Boston University, discussed the importance of stakeholders in the research process.

CAC members and stakeholder Stephen Shore and Alison Singer shared their personal perspectives on the science being presented at this year’s IMFAR. Stephen is a self-advocate, and Alison is a parent and sibling.

For the second consecutive year, IMFAR included an oral session devoted to the stakeholder experience. Seven presentations were given across a range of topics that affect stakeholders including:

* Identifying and Examining Risk Factors for the Emotional and Behavioral Adjustment in Siblings

* College Students’ Attitudes Toward Peers with High Functioning Autism

*Medical Record Validation of Maternal Report of Prenatal Medical Conditions and Obstetric Interventions

*Impact of a Support Group for Siblings of Children with ASD

* When Are Adolescents with ASD Better at Emotion Recognition than their Peers

* Background and Clinical Characteristics of Young Adult Males with ASD Sentenced to Prison for Violent or Sexual Offences and

*Child, Parental, and Contextual Factors that Predict Parenting Stress

Autism-Europe and Autism Speaks
On Saturday, the final day of IMFAR, I was invited to speak at the Autism-Europe meeting. Autism-Europe is an international association dedicated to advancing rights and improving quality of life for persons with autism and their families. The organization has more than 80 member associations of parents of persons with autism in 30 European countries. They were keenly interested in learning more about Autism Speaks’ Family Services and how we are improving the quality of life for those living with autism.

We spoke  openly about the challenges we all face, both politically and personally, in North America and Europe. Clearly, autism is a global issue that demands a global effort.

Although IMFAR always proves both invigorating and exhausting, I almost always leave with mixed emotions. On the one hand, it’s encouraging to witness the growing number and quality of researchers devoting their careers to furthering our understanding of autism. Every year, the science gets better and the enthusiasm around our progress grows. But we still have so much to learn.

Keeping the stakeholder front and center
There’s no question that with each IMFAR the quality of autism research improves along with the depth of our understanding of autism’s underlying biology.

The scientific community no longer debates whether autism is treatable or whether environmental factors might be involved. We know the answer is “yes” to both.

Still there is room to encourage scientists to always keep in mind why they are doing this research. They must never forget the individuals with autism and their families. That’s why it’s critical for stakeholders to be involved in IMFAR. We are the living reminder of why autism science is so important.

Next year’s IMFAR will take place in Atlanta, Georgia, on May 15-17, 2014. I hope to see many of you there! Visit www.autism-insar.org for more information.

Editor’s note: At last week's IMFAR Community Stakeholder Luncheon, INSAR’s Community Advisory Committee presented Peter (center) with a plaque honoring his four years of service leading the committee. The plaque read “with gratitude for his professional and personal leadership over many years in supporting the work of INSAR’s Community Advisory Committee and Stakeholder Meetings.” Peter has played a leadership role with INSAR since 2004, always with a focus of representing the interests of self-advocates and families affected by autism.