Autism BrainNet Launches ‘It Takes Brains’ Donor Registration Website

Therapy room at Lighthouse Autism Center with toys on a table with blue chairs and book shelves above

Autism BrainNet Launches ‘It Takes Brains’ Donor Registration Website

Autism Speaks, the Simons Foundation and the Autism Science Foundation have launched “It Takes Brains,” the new donor registration site for Autism BrainNet.

Autism Speaks Chief Science Officer Rob Ring joined Autism BrainNet Director David Amaral and the Simons Foundation’s Marta Bennedetti in making the announcement at the annual Stakeholders Luncheon at the International Meeting for Autism Research (IMFAR), in Atlanta today.

A year ago, the Simons Foundation and Autism Speaks announced their collaboration in establishing Autism BrainNet to collect, store and distribute the precious brain tissue needed to advance scientific understanding and treatment of autism. The new foundation grew out of the Autism Speaks Autism Tissue Program.

As Autism BrainNet’s outreach program, the “It Takes Brains” website encourages families affected by the disorder to register as future donors.

“I would encourage any family to register to be donors,” says BrainNet family participant Valerie Hund, of Livermore, California. “Although we could not have anticipated losing our son to a seizure, for us, in that moment, we gave back and did something that felt right. So now Grayson can be a pioneer in helping make this next quantum leap in research. Out of something bad, something good came about.” (Also see “Meet the Matthews,” a video message from a newly registered family, below.)

The critical need for brain donations
A severe shortage of human brain tissue has hindered the pace of autism research. At the same time, these precious donations have led to recent breakthroughs.

For instance, research has revealed structural differences between brain tissue from individuals affected by autism and typically developed brains. Other studies have highlighted differences in the numbers and sizes of brain nerve cells, or neurons. Still other research has picked up signs of increased inflammation in brain tissue from individuals affected by autism. In addition, studies have uncovered differences in how genes are expressed inside their brain cells.

However, researchers have not been able to adequately confirm these findings – in part due to the long-standing shortage of donations.

Autism Speaks ATP continues through Autism BrainNet
Through Autism BrainNet, the resources of Autism Speaks Autism Tissue Program will continue to be available for the highest quality research. The Autism BrainNet staff will also continue the ATP’s tradition of close communication with donor families. This will include program updates and news about ongoing brain research.

“Since it was launched in 1998, the Autism Speaks Autism Tissue Program has been committed to providing the rare and precious resource of brain tissue to many highly qualified scientists,” Dr. Ring said. “The launch of Autism BrainNet enables us to continue this mission and expand the number of available collection sites and represents an unprecedented investment ensuring that researchers have access to the brain tissue they need to answer the big questions about autism.”

Autism BrainNet’s founding members
Autism BrainNet is a consortium of academic sites funded collaboratively by the Simons Foundation and Autism Speaks. Together they will collect, store and distribute the donated brain tissue needed to advance scientific understanding of the neurobiology and genetics of autism.

As inaugural members, the following institutions will become collection and storage sites:

* Harvard University/Beth Israel Deaconess Medical Center, Boston;

* The Icahn School of Medicine at Mount Sinai, New York City;

* The University of California MIND Institute, Sacramento; and

* The University of Texas at Southwestern Medical School, Dallas.

Each site will adhere to standard protocols for clinical data and brain acquisition, preparation, storage and distribution to researchers. Plans call for additional sites worldwide.

“Studies on brain tissue represent the best way for researchers to gain a deeper understanding of the genetic, cellular and molecular causes of autism spectrum disorder,” Dr. Amaral said. “This research takes us important steps closer to effective treatments that will lessen disability for affected individuals.”

For more information, visit the It Takes Brains website or call: 1-877-333-0990.

To read the original article published on Autism Speaks website see the link below

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Insurance changes put state’s autism industry on edge

With Insurance Payments Being Cut, What’s Happening to the Autism Industry?

Autism is big business in Indiana.

Therapists work with kids with autism at the Behavior Analysis Center for Autism in Fishers. (IBJ photo/Eric Learned)

Since 2001, when Indiana became the first state to require health insurers to cover autism therapy in a meaningful way, a cottage industry of therapists and other service providers has sprung up.

Indiana boasts one of the highest concentrations of autism-focused therapists and even sports a new magazine, Autism Companion, supported by advertisers and subscribers in Indiana.

“I didn’t even go out and do any market research at all because the demand was so great,” said Jane Grimes, who, before starting the magazine in 2013, was enrollment director at the Applied Behavior Center for Autism, which is expanding to six locations around the state.


But now Indiana’s autism therapists say their prospects are cloudier after the state’s largest health insurer, Anthem Blue Cross and Blue Shield, cut payments 40 percent and took a harder line on paying for therapy for school-age children.

One Indianapolis therapy provider, The Hope Source, nearly closed its doors in March because it couldn’t make payroll, although its finances have since rebounded a bit. Most other therapists have cut staff or services.

“We’re just scrambling around—all the centers,” said Carl Sundberg, executive director of the Behavior Analysis Center for Autism, which operates locations in Fishers, Zionsville and Elkhart. After Anthem’s cuts to reimbursement and hours, his center let go of 15 people, nearly 10 percent of its staff.

“If they were to cut again, we’re all done. The whole system’s done,” Sundberg said. “If the rates were cut again, we would have to provide a service that I wouldn’t want to have my name on.”

For most autism therapists, the Anthem changes began two years ago, when the Indianapolis-based insurer said children age 7 and older need to receive a chunk of their autism therapy from public schools, as state and federal laws for disabled Americans requires.

“Anthem cannot duplicate coverage for services that are available through the public school system,” Anthem stated in a May 2012 letter to parents of autistic children. The letter reiterated Anthem’s commitment to provide coverage for autism therapy. It has physicians review therapists’ treatment plan for each patient and, while it might deny some of the proposed terms, rarely issues a complete denial of coverage.

That meant Anthem would pay for fewer hours of therapy—many providers say 20 hours per week, instead of 40. Therapists say such a policy is fine for children who are ready or nearly ready to do school work with peers of the same age.

Anthem Blue Cross and Blue Shield cut reimbursement and reduced therapy for school-age kids. The changes squeezed therapy providers and forced layoffs. (IBJ photo/Eric Learned)

However, for children more severely affected, public schools are ill-suited and ill-funded to be the major source of therapy, noted Jim Monroe, whose son Evan, 7, has autism.

“That would be a disaster. Because the townships don’t have the resources,” said Monroe, an accountant in Indianapolis who also runs a side business helping families with autism plan vacations to Disney theme parks.

Anthem’s policy change, which Monroe unsuccessfully appealed, caused him to switch his health insurance coverage to UnitedHealthcare to continue to get coverage for his son’s therapy.

“Without the insurance mandate, it’s basically just impossible to get therapy for your child,” Monroe said.

Public school funding

The state provides public schools an extra $8,350 for each student with autism. That’s consistent with national averages, according to a study led by Harvard University researchers that was published in the journal Pediatrics in March.

However, the cost of full-time private therapy is estimated at $50,000 to $60,000 annually, according to a review of studies by the Indiana Health Law Review.

The cut to hours hit The Hope Source particularly hard because 85 percent of its clients are age 9 and over. And founder Julie Brant Gordon said she was determined not to send those school-age kids away.

To help a bit, Gordon signed a partnership with the Indiana Cyber Charter School, so she can enroll all her full-time, school-age clients in that school and, thereby, receive the extra state funding for their “at school” care. But since the school operates virtually, her clients continue to do their therapy at The Hope Source center, as they always have.

But that arrangement still is not enough to make up for the cuts in hours and reimbursement from Anthem. Hope Source dropped its health benefits for employees last year to make ends meet.

“What Anthem needs to understand is that the funding to the schools is so limited, that it’s still not as much as what I’m losing,” Gordon said. “I wish that Anthem wouldn’t have simultaneously cut reimbursement rates and cut hours. And abruptly. Usually, if they’re going to go down, they don’t go down 40 percent—overnight.”

Anthem instituted its reimbursement cuts in January 2013 for applied behavior analysis therapy—the leading approach to helping autistic children overcome their deficits in cognitive, social or behavioral skills.

“There was a need to bring those rates more in line with our fee schedule,” Anthem spokesman Tony Felts wrote in an email. “In some cases, we were paying therapists almost twice as much on autism claims as we were paying MDs for an office visit.”

But many therapists contend autism therapy does not fit well with the “medical model,” because face-to-face time with a therapist is only a fraction of the treatment these centers provide.

Sundberg said most of his time is spent working on the reports and plans necessary to provide individualized treatment to each patient. Such specific treatment is necessary in autism because each patient’s collection of symptoms is distinct.

Vibrant cluster

In many ways, the cuts from Anthem are taking the Indiana autism-provider community back to where it was a decade ago. At that time, few patients knew to take advantage of the insurance mandate, so most payment was strictly private.

The autism insurance mandate is one of the most liberal in the country, according to a 2011 assessment by the Indiana Health Law Review. Now, 30 other states also have mandates, according to the National Conference of State Legislatures, with most of those added since 2007.

But even Indiana’s strong mandate is limited. It applies only to what is called full-risk health insurance, which accounts for only 21 percent of the 4.2 million Hoosiers who have private health insurance, according to 2012 figures from Citi Research and the Census Bureau.

The rest are covered by employers who insure their own health benefits—and as a result fall under federal, rather than state, regulations. The Indiana Medicaid program pays for autism services for low-income Hoosiers that qualify for its coverage.

Even so, the autism mandate likely has increased the cost of full-risk health insurance in Indiana about 1 percent, according to a 2007 estimate by the Council for Affordable Health Insurance.

With fully insured health insurance premiums totaling $3.7 billion per year, according to Citi Research, that estimate suggests the bill in Indiana for autism therapy is $37 million each year.

That money goes to treat the one in 77 Hoosier children diagnosed with an autism spectrum disorder, including a high-functioning form known as Asperger’s Syndrome, as well as what are known as pervasive developmental disorders, according to 2013 data from the Indiana Department of Education.

The U.S. Centers for Disease Control estimated in 2012 that one in every 88 U.S. children was on the autism spectrum. This year, however, the CDC released new data claiming that one in 68 American children has autism.

The rates of autism have skyrocketed nationally the past two decades, which some attribute to a rise in trained professionals who can make such a diagnosis but may also be due to other unknown factors.

In Indiana, 197 organizations now provide autism therapy—or three organizations for every 100,000 Hoosiers, according to a database kept by the Autism Society of America.

Among states with at least 100 therapy providers, Indiana ranks seventh for the most per resident.

Grimes, publisher of the Noblesville-based Autism Companion magazine, had an intuitive sense of those numbers because every time she had helped open an autism therapy center, there had been “overwhelming demand.” Grimes, who has a 15-year-old daughter with autism, also used to run an autism parent support group in Hamilton County.

Now she’s experiencing the same thing with her magazine, which is published in association with IBJ Media Custom Publishing, an affiliate of Indianapolis Business Journal.

“We can’t keep them on the shelves fast enough,” Grimes said of the magazine, which is printed quarterly. She said 10,000 copies are distributed at retail stores or mailed to subscribers’ homes, and another 7,000 are printed from the Autism Companion website. The website receives 500,000 unique views each quarter.

Autism Companion’s advertisers have jumped from 10 in the first issue in September to 26 in the most recent issue. They include not only therapists, but also photographers, lawyers, dentists and schools with a focus on special-needs children. Even Monroe, the accountant and vacation planner, has an ad under the organization he works for, HiHo Vacations.

“From the business sector, it’s been surprising, and we are happy about that,” Grimes said, noting that she’ll be able to add paid staff this fall. “It’s come together really, really nicely.”•

Together, we can unlock your child’s potential

Online Course for Caregivers of Adults with Autism to Begin Next Week!

The fourth round of the AGI Residential/Daily Living Support Course will begin Monday, June 23rd! This first-of-its-kind course, funded by a 2011 Autism Speaks grant to the Autistic Global Initiative of the Autism Research Institute, was developed by a team of 15 curriculum experts from across the United States and is instructed by world-renowned faculty. The Autistic Global Initiative is comprised of a committee of adults diagnosed with autism and is dedicated to fostering the development of adults on the autism spectrum and those who work with and for them.

The 12-week online course, hosted by the Houlton Institute, provides evidence-based practices to those who support people with autism and related disabilities in daily living and residential settings. The course provides parents, siblings, family members, in-home support workers, agency support providers and volunteers from the community the foundational knowledge, competencies and tools necessary to support the daily living needs of transition aged students, young adults and adults with autism. The program is self-paced, facilitated by professors and includes lectures, videos, moderated discussions, activities, chat rooms, reading activities and more.

The 12 topics covered include person-center approach to support adults with autism, learning and implementing evidence-based practices in residential settings, citizenship and community life, supporting safety. The cost of the course is $300 but scholarships are available.

For the original article visit:

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Google to help build world’s largest genomic database on autism

The World’s Largest Genomic Database on Autism

Autism Speaks, an autism science and advocacy organization, is launching a program to develop the world’s largest database of genomic sequence information on people with autism spectrum disorder (ASD) and their families.

It’s partnering with Google to store the database, called the Autism Speaks Ten Thousand Genomes Program (AUT10K), on Google’s Cloud Platform.

AUT10K will serve as an open resource to support autism research. Autism Speaks includes the largest private collection of DNA samples from 12,000 autism cases with diagnoses and detailed phenotyping, which researchers have been using for more than 15 years.

“This is a really exciting time for us,” Rob Ring, chief science officer at Autism Speaks, told CBS News, adding that without the partnership with Google, the project would not have been possible to execute.

“The goal is to build an open-access database for the entire research community,” Ring said.

But how secure is it to store data in the Google Cloud?

“This is as secure as it gets,” Ring said. “The important thing is that the data has been deidentified,” with names and other personal information stripped out, he explained, and researchers who will be using it will have to agree with certain terms of use.

“This announcement represents an unprecedented intersection of business, science and philanthropy that will drastically accelerate the pace of autism research,” Bob Wright, co-founder of Autism Speaks, said in a statement. “The insight and expertise the Google team brings to the table is unmatched. Utilizing Google Cloud Platform further advances Autism Speaks’ commitment to advancing cutting-edge science.”

“Modern biology has become a data-limited science. Modern computing can remove those limits,” David Glazer, engineering director for Google Genomics, said in a statement. “We are excited … about the opportunity for Google Cloud Platform to help unlock causes and treatments of autism.”

Autism Speaks launched the AUT10K project in collaboration with the Hospital for Sick Children’s Centre for Applied Genomics in Toronto.

“The Autism Speaks AUT10K Program is a remarkable achievement,” Dr. Steve Scherer, who directs the Center and who will be the director of AUT10K, said in a statement. “The collaboration between a pioneering tech company and the foremost autism science organization has the potential to transform the autism research landscape in exceptional ways. No other organization outside of major health institutions and academia has accomplished this much this quickly.”

To see the original article visit

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Caring for those with autism runs $2M-plus for life

The parents of children with autism often have to cut back on or quit work, and once they reach adulthood, people on the autism spectrum have limited earning potential.

Those income losses, plus the price of services make autism one of the costliest disabilities – adding $2.4 million across the lifespan if the person has intellectual disabilities and $1.4 million if they don’t, according to a new study published in the journal JAMA Pediatrics.

“We’ve known for a long time autism is expensive, but we’ve really never had data like this to show us the full magnitude of the issue,” said Michael Rosanoff, associate director of public health research for the advocacy group Autism Speaks, which funded the research. “These are on top of the costs to care for a typically developing individual.”

Jackie Marks knows the problem firsthand. The Staten Island, N.Y., mom has 13-year-old triplets, all on the spectrum and all with intellectual deficits.

Everything about their care costs more money, she says, from the diapers and wipes she still has to buy to the specially trained babysitters she has to hire every time she wants to go out. For karate classes, she has to pay for one-on-one lessons; the therapist helping with social skills costs $150 an hour per child.

“I enjoy my children immensely,” Marks said. “I have a wonderful husband. That, at the end of the day makes it all worth it. But is it like a typical experience? No.”

Marks quit her job with the state as a bank auditor to care for Tyler, Dylan, and Jacob. Her husband’s job not only has to cover day-to-day needs, but he has to put away enough money to pay for both her and the boys after he retires. She hopes the boys will be able to work someday, but they’ll never have the kind of earnings that will sustain them, she said, and will probably receive modest Social Security benefits once they turn 18.

Four things need to change to bring down the cost of autism for families and society, according to David Mandell, director of research for the Center for Mental Health Policy and Services at the University of Pennsylvania.

Adults on the spectrum need more job opportunities. There are many small success stories of individuals or small groups of people with autism who are employed, but “we need to be more creative about thinking about employment on a large scale,” Mandell said.

Adult care must be improved so only people who really need expensive residential care get it, and everyone else can find support in their own community, he said. “I think in too many cases, these residential settings represent a failure of our society to provide community-based, cheaper options,” he said. “More flexible, cheaper options would be a way to bring these costs down.”

Families with autism need more opportunities to stay in the workplace. “Issues that face autism ultimately face all families,” Mandell said. “If we had more family-friendly workplace policies, we might see substantial change in the way families were able to manage the work-life balance when they had children with (all kinds of) disabilities.”

Society needs to take the long view, he said. Spending money diagnosing and helping young children on the spectrum will probably save money when they are older, by reducing disability and improving employability. “We often talk about the cost of care, and we don’t spend much time talking about the cost of not caring,” he said.


•Cost of supporting someone with an autism spectrum disorder plus intellectual disability: $2.4 million in the USA and 1.5 million pounds in the United Kingdom ($2.2 million in U.S. dollars)

•Cost of supporting someone with an autism spectrum disorder but no intellectual disability: $1.4 million in the USA and .92 million pounds in the United Kingdom ($1.4 million)

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Autism, Schizophrenia Linked to Environmental Pollution, According to New Study

A new study reveals that exposure to environmental pollution may cause autism or schizophrenia.

While the link pollution and autism has previously been investigated, researchers from the University of Rochester have uncovered the biological mechanism that may explain how pollution can put people at a higher risk for both autism and schizophrenia.

“From a toxicological point of view, most of the focus of air pollution research has been on the cardiopulmonary system – the heart and lungs,” study author Deborah Cory-Slechta, professor of environmental medicine at the University of Rochester, told “But I think it’s becoming increasingly clear that the adverse things happening there are also happening in the brain, and this may be adding to risks for neurodevelopmental disorders like autism that we hadn’t thought about before.”

To conduct the experiment, Cory-Schleta and her colleagues exposed a group of baby mice to levels of air pollution equivalent to those seen in rush hour traffic.

After four hours of pollution exposure during two four-day periods, the group of mice exposed to pollution exhibited significant changes in behavior compared to mice living in an environment with clean hair.

“We see changes in learning produced by these exposures in males and females, and in levels of activity, and we saw deficits in memory in both males and females,” Cory-Slechta said. “We also had a measure of attention, looking at impulsive-like behaviors, which we only tested in males, and there too we saw the effects of postnatal exposure.”

Researchers discovered the effects lasting, reporting behavioral differences between the groups of mice ten months after the exposure. The brains of the mice exposed to pollution had experienced inflammation and “enlargement of the ventricles,” or the chambers on either side of the brain containing cerebrospinal fluid, which, if found in humans, are symptomatic of a neurological impairment called ventriculomegaly. Ventriculomegaly is often associated with damage to the corpus callosum, which connect the two sides of the brain.

“[The corpus callosum] are important for processing cognitive kinds of behaviors, social behaviors and emotional behaviors,” Cory-Slechta said. “And autism is thought to be a disease in which that kind of connectivity is lost, and you also see ventricular enlargement in autism and schizophrenia as well.”

“That kind of air pollution produces inflammation, it is going to produce inflammation peripherally and in the brain as well. And when you produce inflammation in the brain, you can kill cells there,” Cory-Slechta said.

According to national statistics, 1 in 88 children will be diagnosed with autism this year. Males are affected by neurological disorders 4-1 in comparison to females.

“I think in particular autism has been very difficult to discover the ideology of, so to speak, we know there are genetic underpinnings but they don’t fully account for [everything], and the leads in terms of, ‘Are there environmental exposures?’ have been relatively few,” Cory-Schleta said. “And it might be interesting if it turns out air pollution can contribute.”

Geneticist Wendy Chung says that while there are certainly many underlying factors, genes play the largest role in autism– something that parents can do little about. However, she says that a variety of interventions are available to help children and their families affected by autism.

Chung says while there are a plethora of helpful medications available,, educational strategies are just as, if not more, important.

“People diagnosed with autism are wired differently, they learn in a different way, and they absorb their surroundings in a different way,” she said. “We need to educated on how to educated so that we can respond to them in a way that serves them best.”

However, Chung says that while there is much doctors know about autism, there is much more that they don’t know. Consequently, she believes it’s important for the community to use collective wisdom to make a difference.

“We need to join together to become a solution to autism,” she stated. “But it will take a lot of us to focus on what is important; what’s going to be a meaningful difference? As we think about something that will be potentially be a solution, how well does it work? We need to strive to make an impact, to allow those living with autism to live fuller, richer lives.”

– See more at:

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My Job Chart: A Great Tool for Families!

My Job Chart is visually stimulating, engaging and most importantly, FUN! Hard work and money management are two critical skills for individuals with autism of all ages and My Job Chart provides an interactive way to learn both!

Here is what one mom had to say:

“One of the tools we found to help my son was My Job Chart. It was so awesome to watch Ian begin to make the connection, to begin to understand, on a limited basis the concept of cause and effect.  With this tool, we were able to give Ian what he viewed as most comfortable and safe, routine and order, while at the same time teaching him concepts that would help him be able to achieve the independence he so desired.”


This great system provides opportunities for both kids and adults to work, manage time and money, while practicing accountability, responsibility and problem solving. My Job Chart also provides parents a perfect environment to have meaningful conversations about how to make smart money decisions and setting priorities.

With My Job Chart, individuals with autism can record their completed chores and jobs and accumulate coins that are then converted to dollars. Then, the child or adult can manage their own money by deciding whether or not to save, share or spend! Sharing allows them to donate to featured charities like Autism Speaks. The money raised for Autism Speaks will go towards funding iPads for financially disadvantaged individuals with autism who have trouble communicating. can also be used through its Apple and Android mobile apps, allowing parents and kids the opportunity to save, share and spend from anywhere!

For the original article, visit Autism Speaks website.

Together, we can unlock your child’s potential

Great Day for our Families at “FedEx 400 benefiting Autism Speaks”

A Day at the Speedway – A Nascar Experience for Autistic Children


Dover, Del. (June 1, 2014) — Dozens of families from our community got to partake in “Autism Speaks Day at The Races.”  It was a unique opportunity for those on the autism spectrum and their families to attend a NASCAR race in a sensory-friendly area in the grandstands of Dover International Speedway. Autism Speaks offered a pre-race program that morning for the families that included speakers such as Autism Speaks Vice President of Chapter Development Cathy Kanefsky, Delaware Senator Chris Coons, Lieutenant Governor Matt Denn, NASCAR driver Jamie McMurrary, Autism Speaks Vice President of Family Services Lisa Goring, NASCAR crew chief Trent Owens, Joe Gibbs and Richard Petty.

A special moment happened at the end of the program when it was announced to the families in attendance that all of them would be leaving with an autism-specific toy from Toys”R”Us thanks to FedEx!

Among the other highlights of the day included the FedEx 400 benefiting Autism Speaks Sprint Cup race. NASCAR Driver Denny Hamlin had a unique paint scheme to his #11 FedEx Toyota car which had over 2,000 puzzle pieces with the names of members from our autism community on them. In the end NASCAR Driver Jimme Johnson finished winning the FedEx 400 benefiting Autism Speaks Sprint Cup race.

We’d like to thank NASCAR, The NASCAR Foundation, FedEx, Toys”R”Us, Denny Hamlin and everyone else who made race weekend successful!

For the original article on Autism Speaks website see the original link below:

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