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On July 2, 2014, Rikki Cabler of Sullivan, Indiana hosted the second annual RJC Memorial Charity 24-Hour Livestream. This 24-hour online-gaming event united gamers, or rather “Mechwarriors”, from around the world to show their support for autism. Surpassing its goal of $10,000, this event raised over $16,000 for the Autism Science Foundation.

Approximately one thousand gamers entered the No Guts, No Galaxy online community to participate in the RJC Memorial Charity event. Rikki and colleagues encouraged gamers to participate by reminding them, “Nearly every Mechwarrior knows someone living with this condition, or a parent of someone with autism. We often know first hand the difficulties that having autism can create, and we hope to organize the fighting force of each of you into a force not only for big stompy robots, but for making a difference in the real world.”

Every year, on July 2nd, Rikki remembers the passing of his father Ronnie Joe Cabler. Looking to commemorate his father on this day, Rikki grew interested in the idea of a livestream charity gaming event. He began collaborating with a YouTube channel host to map out the logistics of hosting such an event, and his ideas quickly began to fall into place.

When Rikki discovered that his girlfriend’s 14-year old son was diagnosed with ASD, he formed a personal connection to autism. Later, once he met a woman who worked for a local autism organization, he decided that his livestream event would support autism advocacy and research. Thereby, this organization became the designated beneficiary of the RJC Memorial Charity 24-Hour Livestream.

Days before the event launch, gamers began interacting on an online discussion board and voiced concerns that the beneficiary did not support vaccinations based on the disproven notion that vaccines cause autism. Although the event was merely hours away from its launch, Rikki and the directors of No Guts No Galaxy did not want to support the message that vaccines are harmful. Therefore, they reached out to the Autism Science Foundation the morning of the event to ask if it would be the new beneficiary of the charity livestream. 

The Autism Science Foundation agreed to become the beneficiary and the event was launched later that day. ASF’s Community Relations Associate, Meredith Gilmer commented, “We are so excited and grateful to be the beneficiary of the annual RJC Memorial Charity 24-Hour Livestream. All of the donations from this event will directly support cutting-edge autism research.”

With a fundraising goal of about $5,000, Rikki and his team were pleasantly surprised to raise over $8,000 at the first annual RJC Memorial Charity 24-Hour Livestream. Doubling its yield this year, the event proved once again to be a huge success. ASF is grateful for these generous donations as well as the team’s commitment to promoting qualified autism science. Rikki and his team hope for the RJC Memorial Charity 24-Hour Livestream to continue supporting ASF for years to come.

Autism: The International Journal of Research and Practice has published an important and interesting new editorial by Dr. David Mandell and Dr. Luc Lecavalier that challenges the methods the CDC uses to collect and publish autism prevalence data, now at 1 in 68. While acknowledging that tracking ASD is no easy task, the authors question whether the CDC’s surveillance studies should be used as a basis for estimates of prevalence.

Read the full article here. 

Having an accurate estimate of the economic cost of autism has many implications for service and system planning. The most recent estimates are almost a decade old and had to rely on many estimates for which there were no good data. Today in JAMA Pediatrics, researchers, including ASF Scientific Advisory Board member Dr. David Mandell, updated older estimates and further expanded our understanding of costs by estimating them for two countries: the United States and the United Kingdom. They also estimated costs separately for children and adults, and for individuals with autism with and without intellectual disability. To estimate costs, researchers reviewed the literature on related studies, conducting a thorough search of studies that estimated direct costs, such as education and service use costs, as well as indirect costs, such as lost wages for family members and the individual with autism. They found that for individuals with autism and intellectual disability, the average lifetime cost was $2.4 million in the US and $2.2 million in the UK.  For individuals without intellectual disability, the average cost was $1.4 million in both the US and the UK. For children with autism, the largest costs were for special education and parents’ lost wages. For adults with autism, the largest costs were residential care and lost wages.

Click here to read the full article.

By Rachel Zamzow

The International Meeting for Autism Research (IMFAR) in Atlanta, GA brought together 1,800 scientists, clinicians, sponsors and stakeholders for the purpose of exchanging ideas, fostering collaborations and ultimately examining the current state of autism research. The meeting also represented a refocusing within the field, as keynote speakers and presenters called the scientific community to adjust how major questions in autism research are approached.

One call for change involved embracing and addressing the inherent heterogeneity of autism. The notion that hundreds, likely thousands, of genetic changes and many environmental factors contribute to autism was reiterated throughout the meeting. In his keynote address, Declan Murphy of King’s College London emphasized the importance of stratifying participant populations by age to provide precision in exploring potential biomarkers for autism. During her talk on brain imaging, Dr. Adriana Di Martino from New York University noted symptom severity, co-occurring disorders, such as ADHD, and gender as additional factors to consider in addressing the heterogeneity of autism.

Presenters also discussed intervention as an area in need of refocusing. In his keynote, Murphy put up a blank slide to represent the current options of effective pharmacological treatment for core symptoms of autism. This dearth of available treatment options is a pressing concern in this field. Several presenters extended this idea to include individualized medicine as a goal for the future of autism research. In addition, Dr. John Sweeney of University of Texas Southwestern encouraged researchers to bridge the gap between clinical research and basic science to improve drug development and inform treatment options.

Another shift evident at IMFAR was increased emphasis on the voices of autism stakeholders, including autistic individuals themselves and their families.  For example, John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s, was a prominent presence on Twitter during the meeting, encouraging attendees to focus on the individual needs and viewpoints of individuals with autism, not just the ever-discussed 1 in 68 statistic. During a scientific panel on gender differences in autism, two women with autism posed important questions to the panel about identifying and treating autism in girls. Lastly, 2014 INSAR Advocate Award recipient Peter Bell implored researchers to spend time within the autism community, leaving the lab at least once a month to personally engage with individuals with autism.

IMFAR 2014 brought together leaders in the field of autism research and advocacy, allowing for the generation of new ideas and collaborations. But the true benefit of this meeting was the refreshing chance to stand back as a field, assess from where we’ve come and refocus on important issues for the future of autism research.

By Peter Hotez, M.D., Ph.D.
Founding Dean, National School of Tropical Medicine, Texas Children’s Hospital Endowed Chair in Tropical Pediatrics

 

Today is the seventh annual World Autism Awareness Day, a day when organizations committed to autism research, advocacy, or policy promote awareness through events and public discussions.

As both a scientist and a father of four – one of whom is an adult child with autism (as well as other mental and physical disabilities) and a second who is actually doing her Ph.D. on the developmental psychology of autism – I am often asked to speak or provide public comment about the autism spectrum conditions, especially their causes.

Indeed, the fact that I lead a multidisciplinary team that develops neglected disease vaccines while also serving as President of the non-profit Sabin Vaccine Institute and Texas Children’s Hospital Center for Vaccine Development often places me front and center in the dialogue about purported links between autism and vaccines.

For me, the issue is completely straightforward.  From a scientific perspective, there is no scenario where it is even remotely possible that vaccines could cause autism. Instead everything I know both as a parent and as a scientist points to autism as a genetic or epigenetic condition.

new paper just published in the New England Journal of Medicine by Eric Courchesne and his colleagues at the University of California, San Diego, confirms that the brains of children with autism have distinct patches of architectural disorganization in their prefrontal and temporal cortical tissue.  Because the organization of the cortex begins in the second trimester of pregnancy, Dr. Courchesne concludes that the events leading to the malformation of the cortex must begin around this time or perhaps before then, certainly well before a child is born or ever receives a vaccine.

These new findings make a lot of sense.  Another term for autism is pervasive developmental disorder (PDD) and indeed I am often struck by how my child’s neurological deficits are indeed pervasive and that there is no plausible way a vaccine injection could cause such profound structural changes to the brain.

Sadly, there are still widely held misconceptions about vaccines and many parents still continue to attempt to withhold or delay urgently needed vaccines for their child.  For instance my colleague Anna Dragsbaek, who heads The Immunization Partnership, tells me that each year tens of thousands of children in Texas do not receive their full complement of vaccinesbecause parents opt out due to unwarranted fears of adverse side effects of vaccines.

The results of not vaccinating your child can be devastating, such as in a recent measles outbreak in Tarrant County, Texas, and another one in Orange County, Calif., that were both totally preventable.  I like to emphasize that measles is not a benign illness, and can cause pneumonia, ear infections, diarrhea and in severe cases, encephalitis.

My research group works closely with the Institute of Health Metrics and Evaluation at the University of Washington Seattle, which recently published findings indicating that worldwide 125,400 children died from measles in 2010, in addition to 81,400 from pertussis, 61,300 from tetanus, and almost one million from pneumococcal disease. We have safe and effective vaccines for each of these diseases and sadly, most of these deaths could have been prevented!

So on this day I hope to continue to educate the public both about our safe and effective vaccines, while focusing national attention on autism where it belongs, namely the urgent need for research on the autism spectrum disorders.

There are some excellent resources for the latest research on autism as and the lack of a correlation between autism and vaccines, as well as for parents to identify autism early, when intervention is most effective.

Here at Baylor College of Medicine and Texas Children’s Hospital there is some extraordinary work going on in our Department of Genetics and at the Jan and Dan Duncan Neurological Research Institute.  Our scientists are making extraordinary discoveries leading to the development of new and innovative interventions to combat autism.

As a parent and a vaccine researcher, it is my hope that we put all available resources towards finding the true causes of autism, while also continuing to fully fund the research of new and emerging vaccines that have already saved millions of lives and will save millions more in the next decade.  Both issues are critical to our long-term public health and economic prosperity.

Every adult wants to lead a meaningful life, and individuals with autism spectrum disorders (ASD) are no different. More and more, people with ASD are working, living, and engaging in their communities, and are being recognized for their strengths and talents. Yet the questions still remain: What do young adults with ASD need to transition to being productive members of society whose skills and interests are used and valued? How can professionals, parents, advocates, and others ensure that a place in the world is carved out for these individuals? This conference will present new research and innovative models to spark a dialogue about current challenges and effective solutions to helping adults with ASD obtain and maintain work, social connections, and independence.

ASF Scientific Advisory Board Member David Mandell will be giving the keynote address.

Tune into the Hilibrand Autism Symposium lifestream today from 9:00am to 4:30pm at
http://www.ujafedny.org/autism-symposium/

The Centers for Disease Control and Prevention (CDC) today reported that 1 in 68 children is diagnosed with an autism spectrum disorder. This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children. The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.

For the full press release, please visit our website.

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