If you missed IMFAR 2011 this year, don’t fret! Alex and the Wrong Planet crew did extensive coverage of the conference (the largest scientific meeting for autism research) in San Diego, California. We were given an all access pass to this internationally attended event.

Alex sat down with a lot of interesting people including: John Elder Robison, Clara Lajonchere and David Mandell. In addition to the interviews, there’s also coverage of the tech demos and the introduction given by chief science officer of Autism Speaks, Geraldine Dawson.
David Mandell at IMFAR 2011

Clara Lajonchere, VP of Clinical Programs at IMFAR

Geraldine Dawson Interview

Peter Bell of Autism Speaks – IMFAR Interview in San Diego

John Elder Robison, author of Look me in the Eye and Be Different

IMFAR Tech Demo Awards

Geraldine Dawson Introduction to IMFAR 2011

Press Conference IMFAR 2011 HD

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“In an effort to streamline data-gathering processes and support the therapy team. . .

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“In treating children with autism, it is critical in many programs and services to track significant amounts of data, both for reporting purposes and in assessing learning, behavior and intervention effectiveness. Current data collection techniques can be extremely time consuming, may inhibit the caregiver-child interaction, may be subjective, and do not always communicate all of the information needed to fully assess the skills and treatment objectives under consideration.

“In an effort to streamline data-gathering processes and support the therapy teams working with individuals with autism, Gregory Abowd, D.Phil. and his research team have received a CAN Innovative Technology for Autism grant award.”

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“They had some severe issues, and there were no positive answers for them,” she said. “I had one psychologist tell me to institutionalize my child. Had I been some young mom, I would have given up and walked away without any hope.”

One of Taylor’s sons suffers from Asperger’s Syndrome, a form of autism, and the other boy struggles with pervasive developmental disorder, also an autism-spectrum disorder, which can include impairments in social interaction, imaginative activity and verbal and nonverbal communication skills.

“I can’t take my children back to the store,” Taylor said. “I had to solve the problem.”

She began searching for ways to help her sons. In 1994, she attended a conference in Eatontown on services for children and met members of SPAN, the Statewide Parent Advocacy Network.

“It seemed to be a natural thing — I believed in the mission,” she said.

SPAN, which is funded by federal, state and local grants, and corporate and private donations, tries to empower families and guide other agencies in the healthy development and educational rights of children. The network provides information, support, training and advocates for families of children struggling with poverty, disabilities or discrimination.

Now 50, Taylor has lived in the Lanoka Harbor section of Lacey for five years, although she is originally from Asbury Park. Her sons are now 13 years old, and they have improved so much that “they’re not the same kids.”

Taylor has dedicated her life to helping other families fight to get their children help.

“I became a passionate nut,” she said. “I didn’t want any other parents to go through what I was going through. I volunteered for a few years (with SPAN) before I came aboard.”

Taylor’s college background includes accounting and nursing. She also has a chef’s degree from Rutgers University and, as a part-time job, organizes dinner parties for clients.

In the late 1970s and into the mid-1990s, Taylor worked as the staff supervisor for Joseph Califano Jr., who had served as President Jimmy Carter’s secretary of Health, Education and Welfare and is now chairman of the National Center on Addiction and Substance Abuse at Columbia University.

Now as a family advocate with SPAN, Taylor helps parents fight for their children’s rights in schools, with social services, through the juvenile justice system and with medical and mental care.

“I help families stop being victims,” she said.

Mary Ramirez, 42, of Freehold Township is one of the parents Taylor has helped. Three years ago, Ramirez searched the Internet for answers for her then 10-year-old son, who has multiple disabilities and is a special education student. She found SPAN, and Taylor met with her the same night.

“She has been by my side every since,” Ramirez said. “She speaks to me no matter what time it is.”

Taylor helped educate Ramirez and guide her in defending her son, who after a fight, was kept out of school for two months without tutoring or placement in another school. She said school officials also attempted to expel the boy.

Ramirez said Taylor helped her learn the laws protecting her son, how to file state and federal complaints and even attended court hearings with her.

“She has really helped me learn my rights and my son’s rights,” Ramirez said. “She has made me a much stronger parent.”

Taylor works out of Trenton, although she is on the road most of the time helping families in southern and central New Jersey. She said she handles, on average, six to 10 new referrals daily. Taylor said she logged 4,500 minutes last month just on her cell phone dealing with parents.

“People are talking at them, not to them,” Taylor said. “I tell parents I don’t care when they call, but that they do call. It’s important parents get educated about education.”

For more information on SPAN, call (973) 642-8100 or toll free in New Jersey 1 (800) 654-SPAN.

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D-cycloserine, a drug that has shown to reduce symptoms in schizophrenics, appears to significantly improve social and communication skills in children with autism, according to the results of a small pilot study published in the American Journal of Psychiatry.

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Dr. Christopher LoPata of Canisius College said “they might know everything going on in baseball, but if you try to introduce a new topic, the kids can’t follow…they keep coming back to baseball, that causes difficulty in social relationships.”

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A CONTROVERSIAL autism expert is making a return to the Capital to give a lecture about the disorder.

Raun Kaufman, a United States-based international lecturer, claims he was “cured” of autism and will give a free talk at the National Museum of Scotland.

Parents and professionals will be taught strategies that Mr Kaufman claims can help children with special needs maximise speech and language development, generate eye contact and control tantrums and repetitive behaviours. According to the National Autistic Society, one of every 86 British children has special educational needs related to autism spectrum disorders.

Autism is the third most prevalent developmental disorder in the world and has increased over the last decade.

Mr Kaufman will present Breakthrough Strategies for Autism Spectrum Disorders at the National Museum of Scotland on September 19 from 1pm to 3.30pm.

Mr Kaufman claims he “emerged fully” from autism via the principles that became the basis for his Son-Rise Programme, then went on to graduate with a degree in biomedical ethics.

• The Scottish Autism Society is appealing for cyclists to fly the flag for charity in Portugal and Spain.

The charity hopes to take 50 cyclists to the continent next May to take part in the 500km trip from Lisbon and Seville. The week-long expedition, which sets off on May 7, follows previous challenges such as a Sahara Challenge and an Inca Trail Challenge.

Anyone interested should contact the society on 01259 728340 or visit www.autism-in-scotland.org.uk

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