Autism America Radio is back on Saturday with Special guests Producer and director Tricia Regan (Autism: The Musical) and educational attorney and special education advocate Valerie Vanaman!
Join hosts Matthew Asner and Andrea Nittoli for two hours of talk and interviews Saturdays 3-5PM on KTLK 1150 in Los Angeles.
Want to participate? Call in studio 877-827-1150!
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This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.
The International Meeting for Autism Research (IMFAR) celebrated its 10th anniversary this year. To commemorate this special occasion, the organizers returned to San Diego the site of the inaugural meeting in 2001. Although the city pretty much looks the same (one notable exception is the new Petco Park baseball stadium downtown), the landscape of IMFAR has undergone radical changes. While IMFAR is first and foremost a scientific meeting, the meeting has developed into a healthy blend of science and stakeholder perspectives.
The most notable difference between IMFAR 2001 and IMFAR 2011 is attendance. This year’s meeting attracted almost 2000 participants compared to just 250 when IMFAR began. The original meeting was a satellite to the very large Society for Neuroscience conference. Now IMFAR spawns its own satellite meetings. More than 1,100 research abstracts were presented this year over the course of three days. Ten years ago, there were fewer than 200 abstracts and the meeting lasted just a day and a half. Without question, the quality of research has undergone major transformation during the past decade.
The idea to create IMFAR was first conceived and supported by the stakeholder community. In fact, the first several years of IMFAR were organized by CAN and NAAR, which later merged with Autism Speaks, with strong support and guidance from the MIND Institute at UC Davis. Eventually, the International Society for Autism Research (INSAR) was formed to give autism scientists and students a membership organization to host the meeting and further develop the field. INSAR is now responsible for producing IMFAR each year while Autism Speaks and several other advocacy organizations continue to play a critical role and provide financial support in the form of sponsorships.
Two years ago, INSAR President David Amaral formed a Community Advisory Committee to ensure the stakeholder community is well represented and positively contributes to the success of the Society and its annual meeting. The Committee is chaired by Peter Bell from Autism Speaks (also a parent advocate) and co-chaired by self-advocate John Elder Robison, author of “Look Me in the Eye” and “Be Different”. Total membership includes six parent advocates, two self-advocates and one graduate student.
This year’s IMFAR meeting included many activities geared toward the stakeholder community. For the second consecutive year, one of the local academic institutions (University of California, San Diego) hosted an IMFAR Community Conference the day before IMFAR started. Over 300 attendees including parents, educators, therapists, clinicians and students attended this year’s event. One of the highlights of the conference was a panel of teens with autism who talked about their experiences living on the spectrum.
Once IMFAR opened on Thursday, the spotlight focused on several advocates who were honored at the Awards Reception. In addition to awarding Dr. Margaret Baumen from MassGeneral Hospital with the Lifetime Achievement Award, the INSAR board of directors created a new annual award called the INSAR Advocate Award for the important contributions that advocates make to research. Appropriately, the inaugural award was given to the founders of the organizations that started IMFAR ten years ago, Portia Iversen and Jonathan Shestack from Cure Autism Now (CAN) and Karen and Eric London from the National Alliance for Autism Research (NAAR).
The INSAR board also gave a Special Recognition Award (posthumously) to Bernard Rimland, PhD who is widely recognized for his discovery of the powerful evidence that autism is a biologic disorder and not due to poor parenting. Dr. Rimland later formed the National Society for Autistic Children, which is now known as the Autism Society of America, as well as the Autism Research Institute. This honor was especially fitting because San Diego was his home. His wife Gloria and son Mark were on hand to accept the award and enjoyed a standing ovation in memory of Dr. Rimland’s significant contributions to autism research.
A special surprise greeted those who attended the annual reception at the conclusion of day one. Under beautiful sunny skies on the rooftop deck of the Manchester Hyatt Hotel, IMFAR attendees were treated to a wonderfully entertaining performance by some of the stars from “Autism: The Musical”, the Emmy-winning HBO documentary. Not surprisingly, autism researchers know how to have a good time thanks to the musical talents and personalities presented by these teens.
On Friday, the annual Stakeholder Networking Luncheon, sponsored by Autism Speaks, was held to encourage greater interaction between the autism researchers and members of the stakeholder community. This year’s event attracted over 90 participants, up from about 60 the year prior. Most of the attendees were parents or grandparents, with about a dozen participants being autistic individuals and another dozen being siblings of a person with autism.
The luncheon included presentations by both scientists (INSAR President David Amaral from UC Davis, IMFAR Keynote Speaker Ricardo Dolmetsch from Stanford University and ATN Clinical Coordinating Center Director James Perrin from MassGeneral Hospital) as well as stakeholders (parent/researcher Sarah Logan from Medical University of South Carolina and autistic self-advocate/author John Elder Robison). Stay tuned for video highlights of the luncheon by Alex Plank and his crew from Wrong Planet.
During her brief remarks at the end of the luncheon, Sarah Logan, who is a PhD student at Medical University of South Carolina as well as the mother of a 14 year old boy with autism, referenced a quote from Albert Einstein: “A man should look for what is, and not for what he thinks should be.” She eloquently pointed out that as stakeholders, it’s natural (and easy) to become emotionally invested. Yet IMFAR presents science as science – with passionately curious individuals who can find harmony between the emotionally invested and the empirically driven.
Sarah further explained: “At the end of the day, one thing we all have in common is that we want a better quality of life for our loved ones living with autism. And that comes with knowledge. Knowledge is power. IMFAR is an amazing place to both gain, and share knowledge that will lead to improved quality of lives for all of those involved – parent, individuals, caregivers, families and siblings.”
This is a guest post by Alex Plank, an autistic adult who founded the online community Wrong Planet. Alex is a graduate of George Mason University.
Thanks for tuning in to the latest episode of Autism Talk in which we interview Elaine Hall, the founder of The Miracle Project in Los Angeles. Elaine worked in the film industry until she adopted an autistic son and decided to start the Miracle Project, a successful program in which autistic children sing and act and dance in order to promote learning and social interaction.
Elaine and The Miracle Project were featured in the HBO documentary “Autism The Musical” and wrote a book about raising her autistic son entitled “now i see the moon.” Elaine generously granted us an interview in which she talks about her experience raising her deeply autistic son. In addition, Elaine explains The Miracle Project and her views about working with autistic children.
Over the past few years, the prevalence rates of autism have become staggering, with 1 in 110 children being diagnosed with autism. There have been several movies and documentaries which have placed autism at the forefront. These movies have spread awareness and helped to inform the masses. Here is a list of some movies that have a common theme of autism. Thanks to The Internet Movie Database, we have synopses of each for you. Follow the links to learn more about these films and documentaries. Which of these movies have you watched? What did you think?
A Mother’s Courage: Talking Back to Autism (2009)
The Sunshine Boy is a moving, compassionate portrayal of a mother’s desperate quest to understand the perplexing condition that controls her son. A journey through different countries, where every stop-over opens a new path into the depths of autism – and places her son in a strikingly different perspective as it reaches the end. Read more.
Soon after moving in, Beth, a brainy, beautiful writer damaged from a past relationship encounters Adam, the handsome, but odd, fellow in the downstairs apartment whose awkwardness is perplexing. Beth and Adam’s ultimate connection leads to a tricky relationship that exemplifies something universal: truly reaching another person means bravely stretching into uncomfortable territory and the resulting shake-up can be liberating. Read more.
Autism: The Musical (2007)
Director Tricia’s Regan’s riveting documentary follows five different families, participating in The Miracle Project (a theatre program created specifically for children with special needs) as their kids write and perform their own musical production. The film is as much about the parents of autistic kids as it is about the kids themselves. How does one communicate with a child who won’t speak? What do you do when your kid only sleeps two hours per night? How do you cope with a world that has little use or compassion for kids that are so different? These are only a few of the questions that the parents must deal with, questions illustrated by a series of almost painfully honest and blunt encounters. Perhaps the most surprising of the kids profiled is Neal, the son of Elaine Hall, who founded the Miracle Project. Profoundly autistic, he hardly speaks, and is prone to violent tantrums, but when he is finally fitted with a keyboard voice box, a sweet, intelligent personality is revealed. A complete triumph! Read more.
The Black Balloon (2008)
Thomas is turning 16. His dad’s in the army and they’ve just moved to a town in New South Wales; his mom is pregnant; his older brother, Charlie, who’s autistic, has his own adolescent sexual issues. Thomas finds Charlie an embarrassment in public, so when Thomas is attracted to Jackie, a girl in his swim class, Charlie presents any number of obstacles when she drops by their house, when the three of them go for a walk, and during a family birthday dinner. Can Thomas find a way enter the world of teen romance and still be his brother’s keeper, or is Charlie’s disability going to prove more than Thomas can handle? Read more.
God’s Ears (2007)
Alexia, working in the sex industry, her perspective on men soured by her job, can’t seem to find her way out. When she encounters Noah in a restaurant, he can barely look at her, not because she’s beautiful, and she is, but because it’s simply just too painful to gaze upon a face, any face. His autism, though seen as a handicap by others, is the condition that causes him to “see” Alexia not as a sex object, but as she wishes to see herself–as good and worthy to be loved just as she is. He captures her attention and her heart. It would seem an unlikely meeting, but Worth creatively draws the parallels of human loneliness and longing that bring these two people together in an unforgettably touching story of the heart. Read more.
Mozart and the Whale (2005)
A dramatic-comedy, inspired by the lives of two people with Asperger’s Syndrome, a form of autism, whose emotional dysfunctions threaten to sabotage their budding romance. Donald is a good-natured but hapless taxi driver with a love of birds and a superhuman knack for numbers. Like many people with AS, he likes patterns and routines. But when the beautiful but complicated Isabel joins the autism support group he leads, his life – and his heart – are turned upside down. Read more.
Temple Grandin (2010)
Biopic of Temple Grandin, an autistic woman who overcame the limitations imposed on her by her condition to become an expert in the field of animal husbandry. She developed an interest in cattle early in life while spending time at her Aunt and Uncle’s ranch. She did not speak until age four and had difficulty right through high school, mostly in dealing with people. Her mother was very supportive as were some of her teachers. She is noted for creating her ‘hug box’, widely recognized today as a way of relieving stress and her humane design for the treatment of cattle in processing plants, even winning an award from PETA. Today, she is a professor at Colorado State University. Read more.
Walking in the Dark : Finding the Light in Autism (2010)
In the documentary, “Walking In The Dark: Finding The Light In Autism” hope is restored. The primary purpose of this documentary is to serve as an educational tool to help parents seek those unanswered questions, find ways to network and to get involved. And, through meeting the families, find hope. You will come into their lives, their homes, and see how they live day to day. See how they cope, how they search for the best therapies and medical attention they can find for their children. And, most of all, through the eyes of their children, see the hope. Read more.