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Archive for May, 2010

Autism in the News – Tuesday, 05.25.10

Autism achievement is a first for Scotland (Scotland)
BANFF Primary has become the first mainstream school in Scotland to receive accreditation from the National Autistic Society. The school was presented with its accreditation last Friday by Stephen Pyott of the National Autistic Society.The school was presented with its accreditation last Friday by Stephen Pyott of the National Autistic Society. Read more.

Gender might have everything to do with autism, British researcher says (The Gazette)
By the tender age of 18 months, most toddlers point at things, follow the gaze of someone else, or engage in pretend play. Children who fail these three key indicators are the ones likely to be diagnosed with autism or its relative, Aspergers Syndrome, the high-functioning end of autism — and the spectrum is far more common in boys than in girls. Read more.

As Autism Web Sites Boom, Experts Urge Caution (HealthDay News)
When Connie Anderson’s son was diagnosed with autism a decade ago, she scoured the Internet looking for treatments. “I tried all sorts of things I now consider bananas,” said Anderson, now community scientific liaison at Kennedy Krieger Institute’s Interactive Autism Network. “At the time it didn’t feel like nonsense. It was hope. People will try all sorts of things to help their child, sometimes even against their better judgment.” Read more.

Inspiration Awards honor three schools for student “inclusion” (Las Vegas, Nev.)
More than $8,000 was handed out to three Washoe County schools Monday evening, as part of the Inspiration Awards at the Sands Regency Hotel and Casino. Former First Lady Sandy Miller hosted the event, with a room full of teachers, parents and a few students looking on. Sunbelt Communications President and Autism Advocate Ralph Toddre was one of the speakers commending the schools on their achievements. Read more.

Communication at his fingertips: Group donates iPod Touch to help autistic child (Roanoke, Va.)
Nine-year-old Romeo Gaona of Roanoke faces a barrier when it comes to communicating. “He talks a little,” said Wayne Fridley, his grandfather. Those who don’t know Romeo well have difficulty understanding what he is saying. Read more.

Hanover organization Employment Horizons helps the disabled find meaningful work (Hanover, N.J.)
The question from the employee on the other end of the phone line was unique. “Barbara, I’m in the hospital. Do I still have my job?” recalled Barbara S. Brown, the administrator for a pediatric and adult ophthamology practice based in Cedar Knolls. Read more.

Kentucky’s Kids with Autism Deserve Better

May 25, 2010 3 comments

This is a guest post by Janet Pope, Autism Speaks volunteer and Anne Gregory, Autism Speaks Kentucky Chapter Advocacy Chair.

This past April, for the first time in my life I learned what it truly means to live in a democracy. Since the start of 2010, our group of Autism Speaks volunteers had been in our state capitol for months working diligently with members of various House and Senate committees on a matter near and dear to our hearts – autism insurance reform, because we believed Kentucky’s children with autism deserved better.

After months spent in the capitol’s hallowed halls talking to legislators, testifying at hearings, and countering the insurance industry’s iron grip on insurance policy in the Commonwealth of Kentucky, we emerged on March 16 with a unanimous vote on the House floor in favor of our bill, House Bill 159. That victory was sweetened when, 16 days later, the Senate also voted unanimously to pass HB 159!

Until this experience, I held an image of all special interest lobbyists and politicians in an unfavorable light, as many of us do. I am a veteran reader of John Grisham novels about big tobacco, the pharmaceutical industry, and, of course, the insurance company lobbyists who, in these novels, try to manipulate politicians. These were the horrible images that immediately came to my mind. However, after many months of working closely with a special interest lobbyist, I became very aware that they are not all bad men, out to dupe the public or our politicians into passing unfavorable laws. In our case, this image could not have been more wrong. Our lobbyist, Bart Baldwin, spent countless hours with us, guiding us through the delicate, chess-like maneuvers of professional politics. He laughed off our rookie mistakes and, in the same way we teach our children, he modeled appropriate behavior and language for us to use in our conversations about autism insurance reform with members of the state legislature. Bart is a true defender of the rights of our children with autism, as are so many other lobbyists just like him, who work for the passage of good public policy and the betterment of all society.

We were also fortunate to have had two excellent champions for our cause in the House – Representative Jeff Greer and Representative Scott Brinkman. While neither of these men has had to experience the financial drain that a full-time applied behavior analysis (ABA) therapy program puts on a family’s finances, Representative Brinkman is the father of a grown son with autism and did engage in other costly treatments.  Both Representatives had compassion for our issue and moved forward with fervor on behalf of our “insurance is the answer” solution.

Thank you, Bart Baldwin, Representative Greer and Representative Brinkman!  And take that, John Grisham!

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda please visit www.autismvotes.org.

Left to right – Janet Pope, Autism Speaks volunteer; Kentucky Governor Beshear; Anne Gregory, Autism Speaks Kentucky CAC

SENSE Theatre, Makes Sense to Me

May 25, 2010 6 comments

This guest post is by Autism Speaks Blog contributor Kristen Byrne. Kristen is the proud mom of two sons with autism. She is also one of the founding co-chairs of the Sacramento Walk Now for Autism Speaks event.

Just over a year ago I’d heard that Dr. Blythe Corbett, a spunky, brilliant, and caring doctor at the UC Davis M.I.N.D. Institute was developing a program to put children with autism on stage in a musical to perform in front of a live audience. She not only put children with autism on stage in a musical in front of 6 packed theatre houses, she gave our children a unique and precious experience I’m quite certain they’ll remember fondly forever.

I have twin boys who have autism. When they were first diagnosed at age 3 ½, they were non-verbal, engaged in self stimulating and self injurious behaviors, they had significant fine motor skill delays as well as social & cognitive delays. If anyone had said, your kids would be performing in a musical on stage in front of a live audience; I would have thought they were being cruel.

With much apprehension; we completed all of the paperwork for our sons to participate in SENSE Theatre’s first production, Jungle Book Kids in March 2009. We took home the Cortisol sampling kits for the research piece of the project Dr. Corbett was simultaneously conducting, and the boys both endured blood draws all before the first day of rehearsals and I kept wondering – will this be worth it?

At the start of the project we could not comprehend that anyone could have the patience and understanding to handle the constant struggle Ethan & Devan would impart. We doubted that we’d make it very far in the project and while we were cautiously optimistic, we never prepared ourselves for the outcome of success.

Day One

We entered the theatre and immediately the boys dart off into opposite directions. One bee lined to the stage and the other to the back of the house zooming up the stairs two by two. It was a good thing my husband & I decided to go together. They were up and around, down the halls, into the green room, climbing on sets, hanging on the curtains in the wings and opening emergency door exits.

Needless to say, we were exhausted. When we got home that night we got the boys to collect their spit in these tiny vials provided by the SENSE lab, and recorded the events of the day in the log for future researchers to analyze. Feeling somewhat defeated, I briefly contemplated calling Dr. Corbett that night to tell her we quit. However, this thought quickly vanished; we are not quitters and surely the next rehearsal would be better. While the boys did not appear to have had a good time, I caught them both singing one of the Jungle Book songs in bed, “Look for the bare necessities, the simple bare necessities, forget about your worries and your strife!” And that was it for me – I would not feel tired, I would not complain, I would not worry – I would dutifully drive them 45 miles to rehearsals for two hours and happily drive another 45 miles home two or three times per week to see them perform live on stage in front of six packed theatre houses.

Day Four

We entered the theatre as before and unlike the times before both boys sought out their SENSE buddies with no prompting required. Progress already! The SENSE buddies were neuro-typical cast members who volunteered to help a child with autism in the cast. Ethan would ask for Eric, Chris & Turner by name and each time he saw them at rehearsals, a huge grin lined his face. Devan would ask for Camilla, Autumn, & Turner and they were all there each day with open minds, open hearts and open arms.

The SENSE buddies performed roles while being video recorded. The videos were uploaded to a website for us to stream at home so the boys could rehearse their parts throughout the week. These videos were ingenious! We’d just click play and the boys would come running into the den and start singing and acting without us having to convince them to rehearse.

Tech Week, Three Months Later

iPhones, V-tech games, M&Ms, gummy bears, Star Wars figures, token charts, squishy stress balls, books, play dough, and puzzles covered the green room. The parents & the SENSE buddies retreated to the green room with the kids after each song to break and regroup. The costumes took some getting used to, working out the kinks of the bumble-bee head dress, the bulky feeling of the stripped fabric draped over head, the wolf head that wouldn’t stay on top of Devan’s head, and the Kaa snake puppet resting on his back. It seemed that the show was coming together just in time for opening night.

Stay tuned to see how the Byrne family and SENSE Theatre’s Jungle Book production made out!

Congratulations, Holly!

May 24, 2010 16 comments

Congratulations to Autism Speaks’ Board Member Holly Robinson Peete, who was the runner-up in this season’s “Celebrity Apprentice” and Bret Michaels, who took home the top prize. We are so proud of Holly, who did so much this season to raise awareness about autism and Autism Speaks.

Bret Michaels, who has diabetes and also has a daughter with diabetes, won an additional $250,000 for his charity, the American Diabetes Association. Snapple, the company featured as part of the final task, also donated $250,000 to Holly Robinson Peete’s charity, HollyRod, which helps raise funds for families dealing with autism.

Please join us in congratulating Holly on her success and thanking her for her efforts!

Autism in the News- Monday, 05.24.10

Controversial Autism Doc: ‘I’m not going away’ (MSNBC)
The doctor who suggested a possible link between childhood vaccines and autism stands by his theory and said on Monday that he will continue his research despite having his medical license revoked. Read more.

Bret Michaels is the Newest Celebrity Apprentice (Gather)
The Celebrity Apprentice candidate that saw more hurdles than any other this season, Bret Michaels, has overcome it all to be crowned the newest Celebrity Apprentice. Michaels beat out fellow final contestant Holly Robinson Peete for the title. Read more.

Autistic Teen Says He Was Beaten and Arrested (Wilmington Island, Ga.)
A Wilmington Island family is upset, after they say four Tybee Island Police officers beat their autistic son. Read more.

At Wilson commencement, Grandin offers insight into the autistic mind (Chambersburg, Penn.)
Temple Grandin laughs at the way her autistic mind works and laughs at the ways she thinks a normal mind could perhaps process information better with autism. Read more.

143 Young Women Earn Girl Scouting’s Highest Honor: The Girl Scout Gold Award (MyCentralJersey)
More than 143 young women will be presented with Girl Scouting’s highest honor for its girl members—the Girl Scout Gold Award at Girl Scouts Heart of New Jersey’s Second Annual Gold Award Dinner and Ceremony Sunday, June 6 from 2-5pm at the Westwood in Garwood, N.J. Read more.

Snapple Launches The Celebrity Apprentice-Inspired Teas Handcrafted by Bret Michaels and Holly Robinson Peete (Plano, Texas)
Snapple says, “You’re hired” to The Celebrity Apprentice-inspired teas handcrafted by finalists Bret Michaels and Holly Robinson Peete. Bret Michaels’ Diet Snapple Trop-a-Rocka Tea and Holly Robinson Peete’s Snapple Compassionberry Tea were created as part of the show’s final task and are now available nationwide for a limited time only. To see a list of participating retailers, visit us online at Snapple.com. Read more.

The net can be good for your health (Australia)
I can download a new episode of my favourite TV show on the night it shows in the US. I can email a movie of my son to his grandparent overseas. I can find a long-lost friend on Facebook in less time than it takes to make a cup of coffee. Read more.

UPDATE: Autism Program (Penn.)
A part time job at Royer’s flower shop on Queen street in Lancaster has helped 22-year old Laura Pavlovic improve her social skills. Difficulty picking up on social cues is one of the challenges people with Asperger’s Syndrome, a form of Autism, have. And as a result, “Aspie’s” as they are affectionately called can often be isolated. But, as a child, Laura had her mother’s help taking her to doctor’s appointments and activities that are paid for by the state. Once Laura turned 21, funding for education, therapies and other support that exist for children, ceased for the adult Laura. Read more.

Dreamers Theater ‘magical’ for young adults with disabilities (Hanover, Va.)Ross Lipstock is a natural on the stage as he takes on one of children literature’s most recognizable and eccentric characters. But off the stage, he is quiet and reserved, creating a stark contrast to his portrayal of the title character in the musical “Willy Wonka KIDS,” based on Roald Dahl’s book “Charlie and the Chocolate Factory.” Read more.

Shadows deceive autistic eyes (PRESSTV)
Apart from being different in their social function and behavior, autistic children see shadows in a different way from normal children, a new study says. Read more.

Updates from the Autism Treatment Network Registry: What Do We Know About Medical Issues in Autism?

May 24, 2010 3 comments

Guest Blogger: Nancy Jones, Autism Speaks ATN/CTN program director

Since its inception, IMFAR has been pivotal in promoting interest in autism research and disseminating findings. These have included findings from treatment studies and interdisciplinary research networks such as ACE, STAART and CPEA. The Autism Treatment Network (ATN) is a unique network that seeks to improve care for families and can serve as a platform for research. The ATN maintains a patient registry that had grown to over 2100 children who are seen for clinical care at the 14 ATN centers across the U.S. and Canada

The ATN reported new findings from its database on the use of psychotropic drugs, use of complementary and alternative medicine approaches, sleep and GI disorders. On Saturday, the ATN led an Invited Educational Symposium on medical co-morbidities. Chaired by Autism Speaks vice president of Clinical Programs, Clara Lajonchere, the panel featured presentations by George Fuchs, M.D. (GI specialist from UAMS; chair of the GI committee), Beth Malow, M.D. (sleep specialist from Vanderbilt University, chair of the sleep committee), Sarah Spence, M.D. (NIMH neurologist and external advisor to the ATN) and ATN Medical Director Dan Coury, M.D.

(View study abstracts and search “ATN” to find the four posters/presentations, learn more about the educational symposium and to see other work based on data from individual ATN sites.)

There are a number of key themes that emerged from the discussion of the findings:

  1. Rates of GI dysfunction (45%), sleep problems (65%), and psychopharm use (27%) in ASD from the ATN database are consistent with previous research and reports from clinical practice. This provides further confirmation to the need to continuing pursuing treatment and care standards for the issues.
  2. The diagnostic and treatment algorithms  (“decision trees” to guide physician diagnosis and treatment decisions) that are currently being piloted in the ATN will become the basis for guidelines that can be shared broadly amongst treating physicians, in partnership with professional medical societies. This could be a model for other developmental disorders.
  3. While not a research network, the ATN is poised to address research directly relevant to clinical care and treatment. Dr. Coury described six on-going studies including a randomized controlled trial of a sleep intervention, a large scale study of nutritional status, and recently launched studies on iron status and metabolism, bone density in children with ASD, the relation of sleep and psychiatric comorbidities, and identification of a specific metabolic disorder (creatine deficiency).
  4. In all the areas, there is still a great need for additional evidence to support the development of evidence-based standards. But findings to date help us several ways:
    • Presentations of these findings at meetings like IMFAR and at professional meetings such as NASPGHAN (GI), SLEEP, and the Pediatric Academic Society are helping raise awareness about these issues, and are informative for specialists with little knowledge or experience caring for children with ASD.
    • They also guide us towards key areas to pursue to support improvements in treatment and care: characterizing the nature of these medical disorders as they manifest in children with ASD; conducting large controlled trials of single treatments;  doing comparative effectiveness research to determine relative effectiveness of different types of treatment,  taking advantage of large datasets (such as ATN as well as genetic databases); disseminating our best evidence to the practicing physician community.

There is great hope in what can be done through the continued collaboration of clinicians, medical specialists, researchers and families. As Dr. Coury remarked, “We may face challenges, but the ATN is currently the only bi-national, multi-site care network of this type for autism. The power of this network is its members – not just the member hospitals and clinicians, but also the family and professional communities to which they are connected.” The contribution of each of our partners is essential to ensuring that top of the line care and the utmost respect is always given to ATN patients.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

Categories: Science Tags: , , ,

Families and Friends Network at IMFAR

May 24, 2010 7 comments

Peter Bell is executive vice president for programs & services at Autism Speaks. He is also a founding member of the Diversity Committee for INSAR and will serve as the co-chair in 2010-2011.

From its inception, IMFAR was a meeting that attracted hundreds of scientists, researchers, clinicians and even students who were interested in advancing the knowledge base of what autism is and how they can help improve the quality of life for those who live with the condition. And though the idea of IMFAR was originally conceived and funded by the two leading national advocacy organizations at the time (Cure Autism Now and the National Alliance for Autism Research, both of whom merged with Autism Speaks) and the M.I.N.D. Institute at UC Davis, the annual meeting quickly became the most popular venue for autism researchers to present their findings, exchange ideas and develop new collaborations to advance the field. Autism Speaks is a major sponsor of the conference.

Eventually a membership organization was formed called the International Society for Autism Research (INSAR) to help advance the quality, size and scope of the annual meeting. In 2008 INSAR created a new peer-reviewed scientific journal, Autism Research, to expedite the publication of key findings specific to the autism community. Without a doubt, IMFAR and INSAR have both been instrumental in developing the field autism research during the past decade as evidenced by the 1,700 participants who attended this year’s meeting in Philadelphia.

As one would expect, many families and individuals who are affected by autism are deeply concerned and interested in staying on top of the latest advances in autism research. It’s also important for researchers to get input from the patient population they serve. Each year, IMFAR attracts a contingency of stakeholders who want to stay abreast of these developments. Last year, INSAR formed a Diversity Committee to increase membership diversity for INSAR as a whole and to increase the participation of family members and individuals with autism as well as those visiting from other countries at its annual meeting.

This year, the Diversity Committee hosted a special luncheon during IMFAR called “Family & Friends Networking Luncheon.” The event was sponsored by Autism Speaks and I helped moderate the discussion. The Diversity Committee selected a panel of researchers from this year’s Invited Educational Symposia who included: Daniel Coury, M.D. (Nationwide Children’s Hospital), Craig Newschaffer, Ph.D. (Drexel Univ.), and Sarah Spence, M.D., Ph.D. (NIMH). In addition, INSAR President David Amaral, Ph.D. (UC Davis) was on hand to provide an overview of autism research in general as well as the history of IMFAR. He welcomed the involvement of families and individuals affected by autism and reinforced their importance in the planning of future meetings.

Dr. Coury, who is also the Medical Director of Autism Speaks’ Autism Treatment Network (ATN), shared details about the ATN and some of the exciting research findings that were presented at this year’s meeting. Many of the attendees were pleased to hear about the focus on GI and nutritional issues, sleep abnormalities and metabolic disorders that are present with many people living with autism. Dr. Newschaffer shared his enthusiasm about the future direction of epidemiology as a means of identifying risk factors associated with autism, in particular the increased focus on the role the environment plays. He highlighted his EARLI Study which is tracking the pregnancies of mothers who already have a child with autism from as close to conception as possible through the first three years of the newborn child’s life. And Dr. Spence discussed several autism-related clinical research projects that are taking place within the NIMH Intramural program including drug trials for immune disorders, sleep issues and epilepsy. Many of these trials are in response to parents’ concerns and will hopefully give future direction for the use and development of autism treatments.

The second half of the luncheon was devoted to questions from the almost 60 family members and individuals with autism spectrum disorders (ASD) who were in attendance. The dialogue was rich, honest and respectful. Some parents got a chance to express their concerns about the lack of treatment options and the need for a larger number of well-informed and trained clinicians in the community. On a final note, each panelist was asked what autism advancement (besides something they were working on) excited them the most. Two responded with the development of drugs for other neurodevelopmental disorders that could be relevant for autism with particular emphasis on older individuals; another was excited about the development of non-pharmacological treatments that have the potential to improve outcomes without drugs and the final panelist was encouraged by the developing consensus on potential risk factors associated with autism.

On a personal level, I was excited to witness the exchange of perspectives among these two important groups, families/ASD individuals and scientists. For us to find the answers we need to help those we love living with autism, it’s going to take strong collaboration between these two and this luncheon served this purpose nicely.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

Categories: Science Tags: , ,

How does genetic research benefit people living with autism today? And why do scientists do autism research on mice?

May 24, 2010 2 comments

Guest Blogger: John Elder Robison, author, advocate, adult with autism and member of Autism Speaks scientific advisory board.

Those are two of the questions I discussed with researchers at this year’s IMFAR autism science conference. We’ll start with genetics, an area of study that’s often misunderstood…

The available evidence suggests that autism has both genetic and environmental components. When you study autistic minds at the cellular level, it’s possible to find many subtle differences between the brain cells and structures of people with autism and our typical counterparts. Researchers are working hard to look at those differences and why they occur. At first, scientists thought we were born a certain way, but that thinking has evolved. Now most scientists believe our genes give us a predisposition toward something but both genes and the environment shape the final result.

Adding to the complexity is that “environment” is a catch-all word for many different things, including the air we breathe, our food, our water, and even the social community where we’re parented and raised. We are truly the product of the genetic material we start with and everything we encounter from that point forward.

Researchers have been cataloging autistic differences for some years now. Essentially, they start with the observable manifestation of a difference (like ignoring the people around you or failing to communicate in the normal ways) and work backward until they find a possible biological reason why. For example, a first clue might be an area of the brain that’s too large or too small. Research biologists look at smaller and smaller structures until they get to the smallest difference, which might be an error in the DNA code for those cells.

Having found an abnormal part of the brain, and a possible genetic explanation, they now need to test their ideas out. That’s where the mice come in.

You may have read stories about our gene splicing and engineering skills. Genetic engineering has given us many things, from cloned sheep to drought resistant corn. It also gives us a powerful tool to study complex disorders in humans. In these experiments, mice stand in for people. By introducing the genetic mutations we discover into mice, we are able to observe changes in their brains and even their behavior.

Why mice?

As it happens, mice are uniquely suited for this work. They are genetically very similar to humans, with over 99% similarity in the areas of the brain we’re studying in autism research. Almost every human gene has its analogue in a mouse. Mice are also social animals, making it possible to observe the impact of genetic changes in their behavior. Finally, mice grow fast and are relatively inexpensive to raise.

The human genome has about 3.2 billion base pairs, with about 25,000 actual genes. In a stroke of great fortune for scientists, almost every human gene can be found in a mouse. Mice have fewer base pairs than humans, but their gene count is about the same.  Scientists can insert actual human DNA into mice genes and then breed a population of altered mice for study. This sort of work has been extraordinarily valuable to medical science, giving us insights we just couldn’t get any other way.

When we introduce a human genetic aberration into a mouse we are able to see for sure whether that change introduces a structural change in the mouse’s brain. But more importantly, we get a chance to learn how such a change impacts the mouse’s behavior. Indeed, we are finding genetic differences that do actually translate into autistic behaviors in mice. For example, some differences make normally social mice totally ignore other mice in a cage. Other differences make the mice wring their “hands” and flap in a pattern of behavior that’s striking similar to human autistic stimming.

Once scientists have a mouse that exhibits a particular autistic trait, it is then possible to experiment with therapies to correct the problems. That’s where we are now with a number of genetic differences associated with autism. We are also able to study the relationship between a genetic difference and the environment with mice.

Some of the best-known examples of this work can already be seen in the grocery store, or the hardware store. Just look at the label warnings that tell you repeated exposure to a certain chemical causes cancer. We see those warning labels on packages everywhere. We identify cancer-causing chemicals by exposing mice to a particular compound and seeing if they develop cancer. In the autism world, researchers have looked at exposure to high levels of lead, mercury, and other chemicals to learn how they affect the developing or developed mouse brain.

One day, thanks to this sort of research, we might have labels that say, “Warning – Exposure to xxxx can cause autism.”  There may indeed be environmental toxins that trigger autistic regression in people, and there may be chemicals that make autism like mine worse. If I knew what they were I’d be sure to avoid them – any of us would – but science needs to identify them first.

We know some chemicals are dangerous. Most of us already avoid heavy metals and other known toxins. My concern is that we may find other common but currently ignored compounds that are safe for some people but dangerous to others of us on the spectrum. For many of us, that knowledge cannot come soon enough.

On a hopeful note, we can also try various drugs, some of which can minimize or fix damage that started in the genetic code. For example, researchers have recently found that people with autism have excessive brain plasticity. Plasticity is the ability of your brain to change in response to life circumstances. Plasticity is essential to learn new skills, but too much of it can prevent you from learning much at all, because your mind can’t “take a set.”

We know how to create mice with excess plasticity, and we are now studying the effectiveness of drugs to reduce plasticity in abnormal mice. It’s both safer and faster to try these new drug therapies in mice, because they develop so much faster than humans. That work may – hopefully – lead to promising discoveries that can be tested in humans and perhaps ultimately lead to new therapies for that particular component of autism.

It’s important to keep in mind that we are not creating “autistic mice.” Autism is an extremely complex disorder, to the extent that many people say no two autistic people are the same. What we’re doing is modeling specific autistic differences by finding genetic codes that are associated with them.

That sounds easy, but it’s not. One problem is that a social behavior – like ignoring your fellow mice – might be associated with more than one genetic difference. In humans, we have hundreds or even thousands of subtle differences associated with autism. And no one genetic difference is common to all of us.

That’s why this is such a hard problem to unravel. We can isolate a difference, and even develop a therapy to fix the changes it causes, but that difference may only be present in 1% of the autistic human population. So what do we do for the other 99%? We continue our studies of mice and men, I suppose.

Some people are critical of genetic research in the field of autism, because they fear it may lead to prenatal screening and the abortion of autistic fetuses. I participated in many discussions last week, and I can say with certainty those ideas were not even on the table for the scientists involved.

Others criticize genetic studies because they think (wrongly) that the work won’t benefit anyone living today. However, the stated goal of much of today’s work is indeed to help the current autistic population.

No one can say what the full ramifications of any particular work may be, but I hope the ideas I’ve shared here make the importance of ongoing genetic research clearer. There is indeed a very good possibility that genetic research today will lead to therapies to mitigate certain components of autistic disability well within our lifetimes.

I sure hope so.

To read complete coverage from IMFAR, please visithttp://www.autismspeaks.org/science/science_news/imfar_2010.php.

Read John’s other IMFAR blog post here: A World of Geeks – IMFAR 2010.

TechDemo 2010: Innovative Technologies for Understanding and Supporting Persons with Autism Spectrum Disorders

May 22, 2010 5 comments

Guest Bloggers: Matthew Goodwin, Ph.D., Katharina Boser, Ph.D. (co-chairs of the ITA Steering Committee) and Sophia Colamarino, Ph.D., Autism Speaks VP, Research

The second day of IMFAR brought the second autism Technology Demo sponsored by Autism Speaks’ Innovative Technologies for Autism (ITA) initiative. One of the newest features of the conference, this unique event consisted of live demonstrations of 30 technologies being developed around the world to benefit a number of critical areas affecting individuals with ASD, their families, and the professionals who strive to better support them. This year, while throngs of scientists listened to oral presentations and discussed research posters, TechDemo 2010 provided community members with an opportunity to interact with some of the most recent advancements in the areas of robotics, virtual reality, assistive communication devices, video and audio capture technology, on-body sensors and much more. Taking advantage of the fun, several local families came to explore the technologies with their children and provide critical feedback to the researchers.

The primary mission of Autism Speaks’ ITA initiative is to stimulate creative design that can provide more immediate and tangible solutions to the challenges faced by individuals living with autism today, and the session illustrated the many ways that technology can enhance and accelerate the pace of autism research and treatment.

Several presentations used interactive puzzles and computer avatars to teach children conversational skills or how to read expressions. For instance, one popular project involved the Disney animated character Crush from “Finding Nemo” in an interactive animated show at Disney’s Epcot called “Turtle Talk.” In this show, an actor operates the Crush character remotely using hidden cameras to view his audience. This allows the actor to modulate his interactions in response to specific situational information. The professional Disney actors are also trained to modulate their voice and elicit social interactions such as imitations through engaging games, vocal play and banter. Researchers discovered that young children with autism and minimal verbal skill responded to the turtle with both spontaneous and delayed imitation of vocalizations and gestures. Some children even initiated spontaneous questions, something their parents reported they had never done. These early pilot results are promise as an alternative and engaging therapy to increase arousal level for greater sustained attention and learning.

Emma Brightman attended the Tech Demo with her father Jay and her babysitter Nicole Jacobs. “The interactive computer games were definitely her favorite,” they said afterwards, as a smiling Emma emerged from the room.

A collection of projects also explored the opportunities for using novel sensing devices on the body and in the environment to help parents and therapists understand life from the perspective of an individual with an ASD. For instance, one demonstration showed wearable wireless physiological sensors that record internal arousal states in naturalistic settings, such as at home and school. The technology is being developed to document and understand stress and arousal in persons with autism during engagement with a variety of social, communicative, and learning activities. These physiological measures may guide an occupational therapist as to whether therapies they are using are effective, and what time of day offers optimal arousal for the purpose of treatment. The child may also be able to use the technology to analyze their own internal states. Moreover, in some cases these same technologies can be used as biofeedback to engage individuals more effectively in therapeutic games and everyday activities.  

Mobile applications were also very popular this year. Several at the Demo were shown to improve social skills and awareness in high functioning students with ASD. One product called Symtrend has been developed for use with the iPod/iPad and allows users to log their ‘stress’ responses at various points of the day and can be customized for a variety of different uses and cueing purposes. YouthCare have now adapted it for a summer camp in which students are taught mindfulness and Cognitive Behavior Training to raise awareness of anxiety and stress, and learn strategies to effectively deal with overwhelming feelings. The advantage of such a program is that students can compare their own impression regarding their affective state with that provided by their therapist, as all responses can be tracked and synched via a data graphing and output program that is web-based. Using this method, researchers report a change in physiological response to stress and anxiety such as reduced heart rate as well as an improved ability to talk about and cope with these feelings.

 A second program developed for the iPod acts as a mobile social compass. Based on the social skills interventions that include pictorial representations of social rules, this mobile compass with GPS aids the student by giving pictorial cues to distinguish strangers from friends and prompt them regarding how to interact with such people differently in terms of proximal space and conversation skills. For example, the device can store personal interest information about friends and cue the user with a topic sentence for initiating for a sustainable conversation. In addition, if the user terminates the conversation and starts to walk away, the device can cue for appropriate ‘closure’ of the conversation. This device was found to successfully augment an existing social curriculum and encouraged students to use the system more regularly.

 “As a parent you want your child to be able to communicate and socialize,” said Gail Walsh, who felt her son Dillon could benefit greatly from these technologies. “We’re working on functional skills at home, and seeing all this research really gives me hope.”

 The families in attendance were also eager to share their passion for technology. Doug Fischer attended with his son Ben and Ben’s teacher Dave Mendell, who in honor of the special event had together made a poster describing the many ways they use technology in their own classroom. Upon entering the demo, the young scientist-to-be promptly set the poster up amidst all the other presentations and soon found himself explaining to the scientists what he thinks needs to be done!

 For more information on the Tech Demo and to find the full set of research abstracts, see http://www.autism-insar.org/index.php?option=com_content&task=view&id=187&Itemid=164.

The conference continues through Saturday. To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

Ben Fischer

Emma Brightman

When it Comes to Intervention for Autism, is Earlier Better?

May 22, 2010 2 comments

Guest Staff Blogger: Alycia Halladay, Ph.D.

 This was one of the major questions addressed at the International Meeting for Autism Research Meeting this week. Researchers from around the world – the U.S., UK and Canada, presented their research on the effects of early intense behavioral interventions to treat, and sometimes prevent, symptoms of autism spectrum disorders. Both parent training and clinic-based models were assessed. In many cases, a mix of both was used. While one study found that parent training alone was not effective in improving the symptoms of autism, a group in Canada found that parental training in applied behavioral analysis in children as young as 19 months, together with participation in the intervention process allowed parents to feel more empowered, independent, and reduced stress levels. Another randomized clinical trial in children screened and enrolled as young as 12 months showed that targeting social communication skills increased communication at follow up and decreased hypresponsiveness to sensory stimuli, possibly reducing symptoms of anxiety in children at risk for autism.   

 Early Behavioral Intervention may not only lead to improvements in functioning (as many as 50 percent of those enrolled in one study went on to a more mainstreamed school system) but also produce long lasting improvements. At the Kennedy Krieger Institute, using a 10 hour/week, 6 month classroom based curricula focusing on shared affect, shared affect and joint attention compared to an intervention protocol that did not target these behaviors, those in the treatment group showed improvements on more aspects of functioning, and these improvements lasted 2-6 years after starting in the study. An additional study at the University of Washington reported follow up data from the Early Start Denver Model, which is a comprehensive protocol targeting cognition, motor, language and social domains. Looking at what may have affected improved outcome using this model, researchers found that while individuals with less severe autism were more responsive to intervention, both those with mild and severe autism, and those who had high and low IQ at the start of the study all showed some response to treatment. What was exciting about the Early Start Denver Model was a presentation by a researcher at the University of California Davis who is adapting the training and implementation of the protocol using a web-based application, providing live 2-way interaction to families that lived miles, or thousands of miles away from a treatment facility. This affords more flexibility and accessibility to families on waitlists for early intervention treatments.

 So is earlier better? The scientific consensus is yes, but what does “early” mean, and in what settings? The research is promising and encouraging, but more needs to be done, not only in identifying candidates for early intervention of autism, but in delivering evidence-based interventions that will be beneficial for the entire family.

 The conference continues through Saturday. To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php

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