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Sound Bites – Autism Tidbits from IMFAR 2011

May 14, 2011 9 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.

There is a lot of talk about the need for therapies for adults with autism. A review of emerging adolescent therapies suggests that many can be applied to adults with minimal adaption. Testing/validating of what we have will be a lot less costly than developing something new.

Stem cell research may ultimately hold a key to autism, as we learn to grow brain sections of mice in the lab. That skill may translate to humans within a decade.

More and more, scientists agree that autism is the result of genetic predisposition and a trigger. Many hoped the “trigger” was a simple chemical like mercury, but we are realizing there are both environmental and disease triggers. Unfortunately, knowing they are there does not make them any easier to find. Identifying pathways into autism for a large part of our population remains an elusive goal.

One of the things that pleased me most at this year’s IMFAR conference was the way that advocates and journalists are finally coming together and finding common ground. “As Thinking Person’s Guide to Autism” editor Shannon Rosa said, science doesn’t have a hidden agenda…

This year’s Autism Speaks “Autism Connects” technology competition drew over 130 technical and engineering students to develop tools to help people with communication disabilities. For me, the most important take-away was not the entries themselves but the realization that we have so much to gain by drawing technical people from other fields, like industrial design and computer science into autism research.

For some time we have known that that therapies like ABA teach behaviors, not feelings. For example, we (autistic people) can learn to read a face and realize, “he’s happy,” but that logical knowledge does not often translate to us experiencing the feeling. At this year’s IMFAR Susan Bookheimer of UCLA spent quite a bit of time showing me what imaging studies are teaching us about how we may soon help autistic people feel that happy message and thereby feel happy themselves. That will represent a quantum leap in the power and effectiveness of therapy.

I’ve heard comments about “the rolling walk of autistic people” before. This year I saw results of a study from the University of Fairfield that actually quantified differences in gaits between autistic and NT people. Why do we walk in a sawtooth pattern where NT people walk in a straight line? The researcher had some ideas, but why remains a mystery.

For years people have looked at nonverbal people (autistic or otherwise) and wondered… what’s going inside their brains? If a person can’t talk, they can’t take a conventional IQ test, and rightly or wrongly, many have been presumed intellectually disabled for lack of evidence to the contrary. Today, researchers are using both high precision EEG and fMRI imaging to measure brain patterns in response to stimuli. For example, when a person sees a cat and hears the word cat there is one characteristic pattern of activity. When the person sees a cat and hears dog, the mismatch causes a different activation.  We can measure those responses, even in people who don’t talk, and thereby gain insight into how much they are perceiving and thinking, and how fast. Understanding is the precursor to therapy.

This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags. At the stakeholder lunch, we discussed the balance between funding community services and funding science. Without science, all we have to care for the disabled is faith and compassion. The addition of science-based medicine is what’s taken us from life in the Middle Ages to where we are today. Science provides the foundation to make community and family services work better. That’s why we need it.

When I spoke at the luncheon yesterday, I reminded people that we are all sitting here in safety, but in the middle of our country, one hundred million pounds of water are flowing past Red River Landing on the Mississippi River every single second, and the rate is rising still. That flood could cause the loss of the Old River Control Structure, which is what keeps the Mississippi from changing course and flowing to the Gulf at Morgan City instead of New Orleans. If that happens as a result of this historic flood (already greater than any we’ve seen in 80 years) our country could be facing the worst natural disaster in its history.

If you’re a praying person, now is the time to pray for all those people in the Mississippi floodplain. As much as I believe in science and engineering, if I had to lay money on the Army Corp of Engineers or Nature, I’d have to choose nature.

Why Nature? In the world of autism, the brain nature has given us provides the most complex puzzle man has ever attempted to solve. Out on the river, this flood shows once again how all our science and technology sometimes fades to insignificance before the natural world. Yet we go forward with faith that science will bring us the solutions we need, both on the river and in our heads.

On a personal note, I was pleased to see grad students and researchers whose work I have supported through my participation in review boards bringing the fruits of their work to IMFAR. It made me feel like I had a small part in the collective success of our group, and that feels good.

I was also thrilled to see that Alex Plank (a young man with Asperger’s) was filming the conference and he’ll be sharing it soon on the Autism Speaks and Wrong Planet websites, and elsewhere.

In closing I’d like to thank all the friends I’ve made in this community, and also the folks at INSAR and Autism Speaks, who made it possible for me to attend this conference. I’ll see you next year in Toronto!

Woof!

Behind the Scenes with Chief Science Officer Geri Dawson, Ph.D. at IMFAR

Geraldine Dawson, Ph.D. became Autism Speaks’ first chief science officer in January of 2008. In this role, Dr. Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dr. Dawson presented the Autism Speaks strategic plan on the second day of IMFAR. She also took the time to be interviewed by Wrong Planet’s Alex Plank.

Media Highlights From IMFAR

May 12, 2011 10 comments

The 10th Annual The International Meeting for Autism Research (IMFAR) will host nearly 2000 researchers, delegates, autism specialists, and students in the world’s largest gathering of researchers and clinicians devoted to a better understanding of autism.

At the official press conference, scientists discussed key studies to be presented during IMFAR. David Amaral, Ph.D., the President of the International Society for Autism Research, led with opening remarks. Speakers included Eric Courchesne, Ph.D., Antonio Hardan, M.D., David Mandell, Sc.D. and Irva Hertz-Picciotto, Ph.D. Dana Marnane, Vice President of Awareness and Events at Autism Speaks, moderated the conference.

This video was shot by Alex Plank and the Wrong Planet crew.

• Geraldine Dawson, Ph.D. became Autism Speaks’ first chief science officer in January of 2008. In this role, Dr. Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dr. Dawson presented the Autism Speaks strategic plan on the second day of IMFAR. She also took the time to be interviewed by Wrong Planet’s Alex Plank.

• Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian, is reporting from IMFAR. You read can his blogs herehere, and here.

• 2011 saw a new approach for Autism Speaks’ Innovative Technology for Autism (ITA) initiative with the running of a student design competition called Autism Connects. The design brief was pretty straight forward: to create technology design ideas for individuals with autism to better connect with the world around them, and to allow individuals who do not have autism to better understand and connect with those who do. You can find out more about this program here.

•  David Mandell, Sc.D. conducted a study, ‘The Effect of Childhood Autism on Parental Employment,’ which was covered by ABC Los Angeles, in the clip below.

•  New research is coming out of the International Meeting for Autism Research, includes ‘Adults with autism face health problems with age.’ For the full article, visit here. The clip below is from ABC Los Angeles.

FOX 5 San Diego also covered IMFAR, where Shannon Des Roches, who blogs at Squidalicious, is featured.

• The Fly: into Autism crew was in attendance and performed some of their hit songs.  FLY reflects and honors the diversity of its inspiring voices with an eclectic blend of rap, punk rock, ballads, soul, even Broadway. It boldly opens ears, eyes and hearts to the miracles of autism.


Video Credit: John Robison 

• Alex Plank caught up with Clara Lajonchere, Ph.D, the Vice President of Clinical Programs for Autism Speaks.

Alex Plank to Present at the 2011 NE ASD Network State Conference

Alex Plank will be presenting at the 2011 NE ASD Network State Conference on April 7 and 8 in La Vista, Nebraska. Alex, the creator of Wrong Planet, will be the keynote speaker and also will present at the workshops, School & Autism:  How to help Students with Autism Succeed and Parenting a Child with Autism:  How my Parents Helped Me Succeed. For more information about the schedule, please visit here.

Autism Talk TV – Episode 13

February 8, 2011 8 comments

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.

Autism Talk TV is finally back from our extended holiday hiatus. This week we’re interviewing Bud Fraze, president of Playability Toys. We met Bud at the ASA conference in Dallas and instantly hit it off.

Bud shows us various toys he’s created for children with special needs. You’ll get to learn about a Buddy Dog, a Rib-it-Ball, and a Brain Gear. Playability Toys are designed to stimulate an autistic child’s sensory needs.

We originally wanted to include Bud’s interview in our famous toy episode, but decided he deserved his own show. Aspergian girl and production assistant Kirsten Lindsmith is guest hosting this episode with me. You may remember her from the original toy episode.

To watch this video on Wrong Planet visit here.

Sneak Preview of Robison’s New Book, “Be Different: Adventures of a Free-Range Aspergian”

January 31, 2011 11 comments

Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s, has a new book, Be Different: Adventured of a Free-Range Aspergian, that will be released in March. In this video, created by Alex Plank, John reads the introduction of Be Different, set to photos from his life.

For more information about Wrong Planet visit their site here.

 

 

Autism Talk TV – Episode 12

December 15, 2010 Leave a comment

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.

The Miracle Project is hosting a cruise for autistic children in June of 2011 which features music drama and dance. Stephen Shore will be on the boat teaching music to children.

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.

 

For more information on this episode, visit Wrong Planet.

Autism Talk TV – Episode 11

November 29, 2010 1 comment

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.

If You Could Say it in Words is a great new film about an autistic protagonist Nelson and his experience with love. The film came out on DVD yesterday, November 23, 2010. In this episode of Autism Talk TV, I switch sides of the camera and get interviewed along with director Nicholas Gray and actors Alvin Keith and Marin Ireland about the project. Nicholas has graciously offered to allow approved nonprofits to screen the film for for benefits and community events.

I first learned about If You Could Say it in Words in October of 2006. I was contacted by the director, Nicholas Gray, who had found my interview of Heather Kuzmich from America’s Next Top Model.

After getting the chance to watch the film, I was very excited. I interviewed Nicholas, and actor Alvin Keith, at my home in Virginia. Shortly after the interview was published, I posted a review of the movie to Wrong Planet, in which I described the film as having “the most authentic portrayal of an autistic person that I’ve ever seen in the movies.” After I had posted these two articles to Wrong Planet, director Nicholas Gray and I became friends. Needless to say, I was very happy when he called me and told me that he had secured a distributor for the film.

Nicholas licensed my documentary ‘autism reality’ to include in the special features of the DVD for If You Could Say it in Words. In addition, he asked me to produce a documentary about the plight of the undiagnosed Aspie.

Nicholas has graciously offered to allow approved nonprofits to screen the film for community events. Some nonprofits have already taken advantage of this program. You can contactAdam Eisenstein if your organization is interested showing If You Could Say it in Words at one of your events. Contact aeisenstein@chipchair.com for more information.

Now, please enjoy episode 11 of Autism Talk TV!

Click here for more information about Autism Talk TV – Episode 11. Check out Alex’s work on Wrongplanet here.

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Autism Talk TV – Episode 10

October 28, 2010 4 comments

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.

In this 18 minute episode of Autism Talk TV I sit down with Lindsay Oberman at Harvard Medical School’s Beth Israel Deaconess Medical Center to talk about TMS, a technology that allows researchers to use magnets to affect the brains of individuals with autism. First we have an interview with Lindsay and then you can watch me undergoing TMS.

Lindsay discusses the details of TMS and how it relates to autism. She has been interested in autism since she was a graduate student and clearly has a passion for finding out how autistic brains differ from neurotypical ones.

I was surprised that the TMS researchers were able to use a magnet to move my hand and individual fingers. The region they affected on me was the motor cortex which governs movement. The idea that you can use a magnet to make changes to the brain sounds like science fiction, but it isn’t fiction at all.

Lindsay is close to conclusively figuring out exactly how autistic brains differ from neurotypical brains. There is great potential for TMS being used as a diagnostic tool as well as a theraputic tool. I think you will be fascinated by this episode of Autism Talk TV.

Check out Alex’s work on Wrongplanet here.

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Autism Talk TV and Autism Speaks

August 13, 2010 6 comments

This is a guest post by Marc Sirkin, Autism Speaks Chief Community Officer. Marc manages Autism Speaks social media, marketing, websites and online fundraising.

Since joining Autism Speaks it’s been one of my missions to start to bring the community together through the use of social media. We’ve invested in our Facebook and Twitter presence, our Ning community, our e-mail newsletters and two rapidly expanding and successful blogs – one for Autism Speaks and one for Walk Now for Autism Speaks. I am seeing some terrific conversations developing and platforms that enable the community to come together in a global conversation about autism.

At Autism Speaks, a big piece of our mission is to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. Through social media, I am hoping to help move this along. You can read our entire mission here: http://www.autismspeaks.org/mission.php

A few months ago, John Robison and I started talking about how we can continue to drive a dialogue and to bring the different and disparate pieces of the autism community together. Right before the IMFAR conference, John called me to tell me about a young man named Alex Plank, who is the founder of Wrongplanet.net. John had spent some time with him and thought that Alex, despite his public criticisms of Autism Speaks, would be a terrific person to involve in this ever expanding conversation. After attending the GRASP benefit event and meeting Alex, I invited him and John to a meeting to discuss some ideas on how we might work together. I eventually spent an entire day with Alex, hashing through a bunch of very cool, social media ideas, including one terrific nugget that has now become “Autism Talk TV.”

The idea is simple really, Alex was already producing a show that would feature a variety of perspectives from the autism community and we wanted to help. Not only did we want to give Alex a chance at creating a successful web show, we thought he was terrific on camera and with a promotional boost, more people might enjoy tuning into his show. Alex’s lively and engaging style as a host felt right to us and we committed to doing some test shows and to act as a show sponsor to help promote the show.  As a sponsor, we have no creative or content control; we do not drive Alex’s content agenda, but will provide assistance where we can for access to guests and additional information as well as show promotion where we can.

Our expectations are simple: we hope Alex will produce great content in an enjoyable, web-based format and that he will build “Autism Talk TV” into a widely viewed, successful venture. At Autism Speaks, we continue to invest in the entire community and to continue to “listen” and engage the community from all corners. It is my hope that this show will drive forward the conversation and help the entire autism community come just a little closer to each other.

I think it’s already working… on our blog, Jessica wrote “Although it may be surprising to see WP partnering with Autism Speaks, if it’s for a project that’s creating greater understanding about ASD, it’s a good thing,” and Dadvocate wrote “I’m honestly delighted that Alex Plank’s WP is partnering with AS.” I know some may find this partnership confusing or concerning and I’d ask you to allow us to explore this new partnership and see how far we can take it together. Stay tuned for more Autism Talk TV!

Check out Alex’s work on Wrongplanet here.

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