On Friday, Feb. 19, scientists at an international workshop on regression in autism made clear that researchers no longer doubt parent reports of the heartbreaking loss of language and social skills seen in some young children with the disorder.

To the contrary, the consensus at the workshop was that regression may represent a near-universal aspect of autism that can affect far more developmental skills than just speech. New research, for example, suggests that regression in babies can take the form of subtle losses in motor skills and attention to social cues. Parents and doctors are less likely to notice these early signs of autistic regression than they are the loss of language and sociability seen when regression takes place in toddlers who’ve already begun talking.

“We understand now that regression is common, it starts early, and it can affect many different developmental skills,” comments Paul Wang, Autism Speaks’ head of medical research. Dr. Wang was part of the workshop’s online audience of researchers, journalists, members of the autism community and the general public.

During the workshop, which took place at the National Institute of Mental Health (NIMH), in Bethesda, Maryland, more than a dozen leading autism researchers presented findings from recent and current studies on regression.

The presenters included several members of the Baby Siblings Research Consortium, which is supported by Autism Speaks. Some of the strongest scientific evidence of regression has come through research on the younger siblings, or “baby sibs,” of children diagnosed with autism. Because autism tends to run in families, around one in four baby sibs will develop autism by age 3. Another one in five will develop some autism symptoms, though not to the degree that brings a diagnosis of autism. Studying how these babies develop is deepening understanding of how autism unfolds and promises to guide improved methods for early detection and intervention.

The three sessions of the NIMH workshop included new findings on autistic regression in babies and toddlers, presentations on how animal and brain tissue studies can deepen understanding of the brain biology behind regression, and a discussion on how new biological insights into regression can improve early diagnosis and intervention.

Look for the archived webcast of the entire workshop, soon to be posted to the National Institutes of Health videocast website here.

A synopsis of the morning session on new insights into the nature of regression follows below.

Annette Karmiloff-Smith, of the University of London, discussed evidence that the loss of skills seen in autistic regression may stem from too much of the otherwise normal pruning away of excess brain connections during early brain development.

This included discussion of skill regression in typically developing infants. For example, she noted that between ages 3 to 6 months, typically developing infants can recognize parts of speech from many languages. If a baby isn’t exposed to multiple languages by 9 months of age, this ability disappears along with the brain connections associated with it. At the same time, the brain strengthens connections associated with the one language that will become the child’s “native” tongue.

“Different parts of the brain are pruned at different periods in development,” Karmiloff-Smith explained. “Our hypothesis is that in autism spectrum disorder, there’s an imbalance between the strengthening and pruning away of brain connections. It may be that the threshold is very high for pruning. So that [the brain] prunes away not just the weak connections but also the connections that should be strengthened.”

While loss of language tends to be what parents notice in toddlers, Karmiloff-Smith described recent studies with baby siblings that documented earlier, more subtle signs of regression. These included loss of early fine motor skills and a decline in a baby’s tendency to focus on social cues such as eyes and friendly voices.

Karmiloff-Smith emphasized that regression may be much more common than once thought based solely on loss of spoken language. If a child hasn’t yet developed speech when the excess pruning of brain connections takes place, she explained, then the associated “regression” in communication skills may not be obvious to parents, doctors and other caregivers.

In closing, Karmiloff-Smith called for more research with baby siblings to confirm whether “overaggressive pruning” of brain connections is, in fact, behind regression in autism.

Kasia Chawarska, a baby sibs researcher with the Yale Child Study Center, noted that Leo Kanner, the “grandfather” of autism research, was noting regression that involved language loss 60 years ago. Kanner divided autism into two types: innate, or present since birth, and regressive, or starting around 18 months of age. This led to the belief that children who lost language at 18 months were developing typically before regression, Chawarska noted.

“Since then however, research has shown that developmental challenges are occurring much earlier, during what was considered the pre-regression period,” she said. If one looks just at loss of language in toddlers, then regression is evident in about 15 percent of children with autism, she noted. But if one looks broadly at other areas of development and at younger children who are not yet speaking, then regression becomes evident in at least 80 percent of children who have autism or will go on to be diagnosed with it.

Chawarska described recent research using technology to detect subtle signs of regression not easily seen through ordinary observation. “If we track attention down to the millisecond using eye tracking, we see decreases in [attention to social cues] much earlier,” she said.

She also described baby sibs research that identified a “recovery group” of young children who begin losing skills and developing symptoms of autism in the first year of life and then began regaining skills and losing autism symptoms around 18 months. “What is happening here?” she asked. (See graph with blue lines in the slide below.)

“Regression is not an event, it’s a process,” she emphasized. “Often it’s a very protracted process that extends over months. But trying to categorize those who have regression from those who don’t can be like drawing a line in the sand.” We might understand regression better, she proposed, by seeing it as a dimension of autism rather than a type of autism – with some children experiencing a lot of regression and some much less.

She urged broader research that includes more-subtle types of regression than just language loss, as well as research on how and why some young children recover from what looks like regression.

Jason Wolff, of the University of Minnesota discussed insights from the Infant Brain Imaging Study (IBIS), which Autism Speaks also helps support.

He noted brain imaging research by his team and others that associates regressive autism with overgrowth of the brain in the first year of life. Often, this period of overgrowth is followed by a marked slowing of growth so that the brain ends up smaller than average by age 3.

Using noninvasive brain imaging, Wolff’s team found an overabundance of brain connections at 1 year in baby sibs who went on to be diagnosed with autism. But by 2 years of age, these children tended to have fewer brain connections than is typical for their age.

Wolff noted similar findings from at least three other independent research groups. “But we just don’t know what this means,” he said. “We can learn only so much through neuroimaging.”

“A lot of pruning takes place in the first year of life,” he notes. “Is this setting the stage for autism, for loss of skills?” he asked. One thing is certain, he added: “This story won’t be the same for every child with autism.”

Look for the archived webcast these presentations, along with the workshop’s other scientific sessions, to be posted soon here.

Subscribe to a daily feed of Autism Speaks Science News here.

On Feb 25, the White House hosted the Precision Medicine Initiative Summit, marking the one-year anniversary of the initiative to advance tailored treatments and preventive care based, in part, on each patient’s genetic predispositions.

President Obama joined researchers and patient advocates to talk about the promise of precision medicine. As an invited guest, geneticist Mathew Pletcher, Autism Speaks’ interim chief science officer, participated in a panel discussing ways in which precision medicine is already being used to guide and improve healthcare – and how this progress can be accelerated and broadened.

Autism Speaks signature MSSNG program is dedicated to harnessing the power of whole-genome sequencing to advance the development of personalized diagnosis, medical services, behavioral therapies and life supports for people who have autism. The program is now well on the way to sequencing the DNA of more than 10,000 families affected by autism. Already it has made thousands of privacy-protected genomes available for autism research.

Learn more about MSSNG here.

National Institutes of Health Director Francis Collins recognized the efforts of patient advocacy and research groups such as Autism Speaks in advancing precision treatments for a broad range of physical and mental health issues. 

Dr. Collins also announced several new commitments – including plans to recruit at least a million patients willing to share anonymous electronic medical records combined with lifestyle information collected using wearable or smartphone technology.

“This is an extraordinarily exciting time for the sciences,” President Obama said. “Much of this traces back to the mapping of the human genome, which at the time was enormously expensive. With the advance of computers and big data, we are now seeing a rapid acceleration in making that process cheaper, spurring new understanding.”

The key, President Obama added, is to build databases that “invite all of us” to contribute genetic, medical and other personal information that can accelerate the development of more effective and personalized supports and treatments.

In addition to MSSNG, Autism Speaks co-sponsors Autism BrainNet, which encourages individuals and families affected by autism to register for postmortem donation of brain tissue that will be dedicated to research that advances understanding and treatment of autism.

Learn more about participating in BrainNet here.

Last year, President Obama announced the Precision Medicine Initiative to accelerate research into treatments tailored to individual patients. He’s asking Congress for $309 million to fund the initiative next year.

To learn more, also see:
“President Obama Announces National Precision Medicine Initiative”
and
“Progress report on precision therapies for autism”

Watch the archived webcast of the summit's morning statements and panel below.

In a new study, researchers showed that preschoolers with autism gain more language and initiate more communication when teachers learn to use a simplified version of a behavioral therapy that emphasizes shared attention and child-directed play.

The study is among the first to show that an early intervention for autism – proven effective for one-on-one behavioral therapy with an autism specialist – can be successfully adapted for classroom use.

“These results are exciting since few studies have demonstrated such benefits when moving an intervention into the community,” says the study’s senior author, psychologist Connie Kasari, of the University of California, Los Angeles. “The success can be attributed partly to the commitment and enthusiasm of our community partners.”

 Results of the study, funded by Autism Speaks, appear in the Journal of Autism and Developmental Disabilities.

Kasari developed the autism intervention – dubbed JASPER for “Joint Attention, Symbolic Play, Engagement and Regulation – over the last 15 years. JASPER emphasizes joint attention, or shared focus, by engaging children in play routines rich in both verbal and nonverbal communication. It differs from many autism interventions in that the facilitator follows the child’s lead rather than directing his or her attention. The facilitator also encourages the child to initiate interactions rather than simply respond to questions and other prompts.  

Earlier studies showed that JASPER significantly improves sociability and communication in children with autism when delivered one-on-one by highly trained behavioral therapists.

“This study moves JASPER from a one-on-one therapy model to classroom settings using small groups of children and focusing on engagement between children, adults and peers,” Kasari explains. “This highlights the promise of interventions such as JASPER that can easily be modified to fit the existing classroom structure.”

Most preschoolers with autism receive the majority of their intervention services in just such a group setting. In a typical special education preschool, a teacher and aide must divide their attention among at least 8 to 12 students.

In preparation for their study, Kasari and her team worked with special education preschool teachers to simplify and adapt the JASPER method for use in classrooms.

Diverse classrooms
They then enrolled twelve half-day preschool classes, each with eight children, a special education teacher and a teaching assistant in their study. The classes were part of a diverse Los Angeles school district. Just over 20 percent of the participating children were Hispanic, 16 percent were Asian, and 13 percent were African American.  

In order to determine the intervention’s effectiveness, the researchers created a “control group” by putting six of the twelve classes on a wait list while the other six classes completed the eight-week intervention.

The researchers then provided each teacher and teaching assistant in the “intervention group” with two, half-hour introductions to the JASPER method. The teachers and assistants used the JASPER techniques during a daily 15-minute play time with their students. For the first four weeks, the researchers joined the play time to provide coaching. During the second four weeks, they reduced the coaching sessions to three or four times a week.

When less is more
During the coaching, many of the teachers needed reminders to do less directing and initiating – but instead follow each child’s lead during play and other interactions, the researchers report.

At the end of the eight weeks, the researchers used standardized checklists to evaluate how often children initiated social interactions and engaged in shared imaginative play. They also assessed language – in particular the length of each child’s verbal communications (one word, two words, three words, etc.)

Gains in communication and social play
Compared with the wait-listed students, the preschoolers who received the intervention showed more shared attention with others and also initiated communication more often – using gestures, language or both. These children also used longer strings of words, on average, when communicating with their teachers.

The researchers emphasize that these improvements persisted when they returned to the classrooms three months after the eight-week intervention to reassess the students’ social communication skills.  

“While individual treatment is extremely valuable, children with autism need to be supported in applying the skills they learn in everyday settings such as at school,” comments Lucia Murillo, Autism Speaks’ assistant director of education research. “It’s important that evidence-based treatments be made practical for classroom use so teachers can more easily integrate them into a child’s school day,” she adds. “More studies like this will help ensure that teachers have a greater collection of tools to draw from when it comes to teaching children with autism or other developmental challenges.”

Subscribe to a daily feed of Autism Speaks Science News here.

The autism community is invited to participate in a webinar – Sleep Challenges in Autism: Causes, Consequences and Therapeutic Approaches – led by neurologist and sleep researcher Beth Ann Malow.

The webinar will take place on Tuesday, March 8, at 1 pm Eastern.
Log-in details below

Dr. Malow practices within the Autism Speaks Autism Treatment Network, at Vanderbilt University Medical Center, in Nashville. Autism Speaks has been a proud funder of her pioneering work on autism-related sleep issues. Dr. Malow also co-authored all three of Autism Speaks ATN/AIR-P tool kits for addressing sleep issues in children and teens with autism.

Download these and other Autism Speaks tool kits for families and health professionals free of charge here.

The free, 50-minute webinar, sponsored by the Simons Foundation and the Interactive Autism Network, will include a question and answer period.

To attend, go to www.readytalk.com on March 8 at 1 p.m. Eastern Time (10 am Pacific), enter 2979382 in the "Participant, Join a Conference" box, and click the “join” button. No prior registration is required.

To submit a question, send it either before or during the webinar to tfumberi@simonsfoundation.org.

Can't attend? The archived webinar will be posted on IANcommunity.org a few weeks after the event.

Subscribe to a daily feed of Autism Speaks Science News here.

New research underscores the importance of physicians looking for and addressing the neurological and mental health issues commonly associated with autism – with numbers suggesting that these conditions are driving the higher rates of premature death long associated with autism.

The researchers analyzed the medical records of nearly 2 million Danish children and young adults born between 1980 and 2010 who had survived beyond infancy. This included more than 20,000 who had autism. Their study confirmed earlier findings that, overall, people with autism have around double the risk of early death as people who don’t have the disorder.

But the increased risk was concentrated among those who had one or more of the neurological  or psychiatric conditions commonly associated with autism. These include seizures (epilepsy), intellectual disability, anxiety and depression. Having one or more of these issues increased the risk of premature death as much as seven-fold, regardless of whether or not the child or young adult also had autism.

The report appears in this month’s issue of JAMA Pediatrics. (Read the full text here.)

“Our research suggests that the mechanisms that bring about early mortality in persons with autism are shared with other neurologic or psychiatric conditions,” says study leader Diana Schendel.

“Importantly, this study underscores the need for physicians to look for and address autism’s many co-morbidities – beginning in childhood and early adulthood,” comments developmental pediatrician Paul Wang, Autism Speaks head of medical research. (Autism Speaks was not directly involved in the study.)

The Autism Speaks Autism Treatment Network, with 14 sites across North America, is dedicated to the comprehensive healthcare of children and teens with autism. Its physicians include specialists in the treatment of epilepsy, gastrointestinal issues, sleep disorders, anxiety and other autism-related medical and mental health issues.

“This study provides clues about what may be driving the reported increase in mortality among people with autism,” adds epidemiologist Michael Rosanoff, Autism Speaks director for public health research. Still, the overall rate of early death among the children and young adults with autism was just 0.3 percent , Rosanoff notes.

* Learn more about the Autism Speaks Autism Treatment Network here.
* Find the ATN center nearest you here.
* Explore our archive of ATN expert-advice blogs and news stories here.

According to an analysis of the most recent National Survey of Children’s Health, the four influences most strongly tied to having a child with a mental, behavioral or developmental disability are:

* difficulty getting by on family income

* problems finding adequate child care

* lack of a “medical home,” or home base for a child’s medical care

* and poor to fair parental mental health.

The study – Health Care Family and Community Factors Associated with Mental, Behavioral and Developmental Disorders in Early Childhood - United States– appears this week in the CDC’s Morbidity and Mortality Weekly Report. (Follow the title link to read the full report.)

The researchers conclude that their findings underscore the Institute of Medicine’s recommendation that the most effective way to promote children’s healthy development is to direct resources toward improving healthcare and supporting families and communities.

Autism and other developmental disorders affect people across the socioeconomic spectrum. But researchers have long suspected that poverty and poor access to medical services increases the risk, in part through less than optimal pregnancies. 

“These findings add to the growing evidence that developmental issues – including autism – are concentrated among our most disadvantaged and vulnerable communities,” comments Andy Shih, Autism Speaks senior vice president for scientific affairs. “We have an unparalleled opportunity to improve our children’s overall health and quality of life by understanding and addressing the factors – including social influences on health – that have the greatest impact on early development.”

National survey yields new insights
The new findings are based on an analysis of parent-reported information from the 2011-12 National Survey of Children’s Health. Conducted every four years, this CDC phone survey gathers parent-reported information on the health of one child in each participating family. The new report is based on an “early childhood” subgroup of responses from more than 35,000 parents of children ages 2 to 8.

Investigators asked parents if their child had ever been diagnosed with a mental, behavioral or developmental disorder such as autism, attention deficit and hyperactivity disorder, anxiety, depression, intellectual disability, oppositional defiant disorder or language problems. One out of seven of the surveyed parents (around 15 percent) reported that their child had been diagnosed with such a disorder.

The researchers also asked parents a wide range of questions about their family and community. They then analyzed the results to identify the family and community factors most strongly associated with a child having a mental, behavioral or developmental disorder.

“These data support the Institute of Medicine recommendation that resources directed toward improving health care and supporting families and communities are needed to prevent mental, emotional and behavioral disorders, and promote healthy development among all young children,” the study concludes. “Such investments would require substantial collaboration across public health, pediatric and other agencies responsible for providing services to children, but could yield widespread benefits for early childhood and lifelong health.”

Autism Speaks’ Global Autism Public Health initiative is dedicated to expanding access to high-quality autism services, with a special focus on underserved communities at home and abroad.

A leading medical journal has launched an international commission to develop community solutions and public policy guidelines to remedy the persistent neglect of people with mental health issues including autism.

The Lancet Commission on Global Mental Health will be chaired by pioneering autism researcher and mental health champion Vikram Patel and psychiatrist Shekhar Saxena, who heads mental health programs at the World Health Organization (WHO).

The commission will be guided by a stakeholder advisory group that includes Andy Shih, Autism Speaks’ senior vice president for scientific affairs. Dr. Shih leads Autism Speaks’ Global Autism Public Health program.

“Many of our families at home and abroad still face blatant discrimination and poor health because of a continuing lack of understanding and access to effective services,” Dr. Shih says. “More can and must be done.”

The commission’s goals include developing practical, affordable and culturally sensitive methods for identifying and serving children and adults with autism and other mental health conditions in communities around the world. The commission will also provide guidance on establishing and safeguarding basic human rights for those with such conditions – rights such as inclusion in society, access to education and health care, and opportunities for employment. 

“Our goals are ambitious,” the commission leaders write in this week’s Lancet. “We seek to reframe the burden of mental health problems and the value of mental health to society, emphasize the importance of early intervention and show how the societal, ethical and financial barriers to implementation can be addressed.”

The commission will finalize its recommendations in a report to be published on World Mental Health Day (Oct. 20) 2017.

“Autism Speaks looks forward to supporting this important initiative,” Dr. Shih adds. “The recommendations will help influence and guide community, national and global leaders to address the inequality and health disparities often faced by individuals and families affected by autism and other developmental disabilities in the United States and worldwide."

Learn more about Autism Speaks Global Autism Public Health program here.

In a small but carefully controlled study, regular injections of methyl B12 produced an overall improvement in autism symptoms in some children who have the disorder.

The researchers found that the behavior improvement occurred primarily in a subgroup of children who showed particular blood chemistry changes after the methyl B12 injections. In these children, the authors propose, methyl B12 appears to have improved their cells’ ability to methylate DNA. DNA methylation is vital for turning a cell’s genes on and off at the appropriate time. Some earlier research has suggested that the process is impaired in some people with autism.

The new study, supported by a grant from Autism Speaks, appears online in the Journal of Child and Adolescent Psychopharmacology.

It is the first blinded, placebo-controlled trial of methyl B12 injections, which have grown in popularity as an alternative treatment for autism. In this type of carefully controlled trial, neither the participants nor the researchers know who is getting the actual treatment and who is getting a placebo, or dummy treatment, until after the trial ends.

“It’s very important to have placebo-controlled studies like this one,” comments developmental pediatrician Paul Wang, Autism Speaks senior vice president for medical research. “Open-label studies, where everyone knows they’re getting the treatment, commonly show promising effects that reflect expectations rather than treatment effectiveness.”

Dr. Wang cautions, however, that some of the new study’s results were not consistent. For instance, the researchers found significant improvement on one overall measure of autism symptoms. But this impression of overall improvement did not translate into measurable improvements in specific behaviors such as sociability, communication, repetitive behaviors or other core symptoms of autism.

Study protocol
A total of 50 children, ages 3 to 7 completed the study at the University of California, San Francisco. Roughly half received injections of methyl B12 (75 micrograms per kilogram of weight) every 3 days for 8 weeks. The other children received a dummy shot of saline solution that looked like the real treatment.

At the beginning and end of the study, the investigators took blood samples to assess a wide range of metabolic measures. They also evaluated the children’s autism symptoms at the start and end of the study using three measures: the Clinical Global Impressions-Improvement scale (CGI-I), the Aberrant Behavior Checklist and the Social Responsiveness Scale.

At the end of the trial, the children who received the methyl B12 injections scored better than those who received placebo on the CGI-I scale (2.4 points versus 3.1). The score represented an overall rating, or “impression,” of symptom severity by a physician who did not know which children received the B12.

But the other two measures – which involved rating the severity of specific autism symptoms – showed no significant differences between the children who received the treatment and those who got the placebo.  

Responders and non-responders
Of particular interest to the researchers, the behavioral improvement in the methyl B12 group was concentrated among 10 out of 17 children whose bloodwork suggested they had a positive biological response. These “responders” showed increased levels of methionine and other blood chemicals associated with decreased cell and DNA damage.

“Although these findings are preliminary,” the study authors conclude, “this is an exciting finding that suggests that treating a known metabolic abnormality – impaired methylation capacity – holds the potential to improve [autism] symptoms.” They call for support of a larger controlled trial to check and clarify their results.

For related news and blog posts, also see:

* Complementary treatments for autism

* Study finds low B12 levels in brains affected by autism

* Grandma of child with autism worries about B12 side effects

Subscribe to a daily feed of Autism Speaks Science News here.

On the occasion of World Autism Awareness Day, Autism Speaks and the United Nations Permanent Missions of Bangladesh and Qatar co-hosted a UN panel to develop strategies for supporting and empowering people with autism around the world.

The expert panel – Addressing Autism: Strategies for the Global Community Sustainable Development Goals – built on the goals of last year’s UN Sustainable Development Summit. At the summit, world leaders adopted the 2030 Agenda for Sustainable Development, which set 17 goals to end poverty, fight inequality and injustice, improve health and well-being, and tackle climate change in sustainable ways by 2030.

“Children and adults with developmental disabilities have a special place at the heart of the UN Sustainable Development Agenda, because they are among the most vulnerable members of society,” explained Andy Shih, Autism Speaks senior vice president for global public health research. “This is our unprecedented opportunity to inform world leaders about innovative interventions that can empower and enhance the well-being of those with developmental disabilities – and in doing so directly address global disparities in health, education and inclusion.”

Delivering a plan for action
The panel’s discussion will become the basis for a document on recommended measures to address the needs of individuals and families affected by autism and other developmental disabilities and mental health issues. The memorandum will be shared with UN member states to inform their plans for implementing the 2030 Agenda for Sustainable Development.

Autism Speaks Co-founder Suzanne Wright introduced the expert panel, saying: “Our goal is to transform the world into a place that protects the rights and dignity of all individuals with autism… Autism does not discriminate based on race, religion or political persuasion. Yet stigma remains a critical concern in many parts of the world.” (See videoclip below.)

Developmental psychologist Kimber Bogard, director of the Forum on Investing in Young Children Globally, moderated the panel. “I think that this meeting is very important because it addresses the issue of inclusion as countries move toward implementation of sustainable development goals,” Dr. Bogard said. "It’s vital to include individuals with developmental delays and disabilities as part of a larger global development plan.” Dr. Bogard also emphasized the need for a "coordinated approach to move research, policy and practice forward." 

Panelists included:

* Saima Wazed Hossain, chair of the National Advisory Committee on Autism of Bangladesh.

* David Nabarro, UN assistant secretary-general and special adviser on the UN 2030 Agenda for Sustainable Development;

* Paulyn Jean Rosell-Ubial, assistant secretary of the Department of Health in the Philippines;

* Werner Obermeyer, deputy executive director for the World Health Organization (WHO) office in New York;

* Maureen Durkin, a population health expert with the University of Wisconsin School of Medicine and Public Health; and

* Stephen Shore, autism self-advocate and Autism Speaks national board member.

Panelists shared ideas and lessons learned from national and international efforts to address the needs of children and adults with developmental disabilities, including programs aimed at reducing stigma and increasing community inclusion.

The innovative programs discussed by the panel included the WHO Parents Skills Training Program, developed in collaboration with Autism Speaks and pilot tested in China last year. The program trains regional and community master trainers on strategies that parents can use to foster the development of children with developmental delays and disorders including autism.

Autism and sustainable development
Panelists drew connections between autism and the goals of the 2030 Sustainable Development Agenda.

“With 70 million people affected by autism around the world, we will not be able to achieve the Sustainable Development Goals without including autism in each of them,” Dr. Durkin said. Developing practical diagnostic tools and increasing service capacity in practical ways need to be high up on the agenda in achieving the sustainable development goals for the autism community, she added.

“It’s important to look at establishing environments that are enabling,” Mr. Werner Obermeyer said. “We need to bring in persons with disabilities into the decision making.”

“Good sustainable development is about ensuring that all people can participate [in society], regardless of their ability,” Dr. Nabarro agreed. “[Autism] is not just a health issue,” he added. “The health sector has to be there, of course, but you also have to get wider societal involvement…. To ensure that no one gets left behind, politicians needs citizens to help make sure this happens.”

Challenges ahead
The panelists also discussed some of the national and global challenges to the development and implementation of autism and developmental disability programs and policies.

“A lot of work needs to be done on surveillance [to determine autism prevalence],” Mr. Obermeyer emphasized. “We do not have much data outside of Europe and the Americas.”

“Stigma is a tremendous barrier to achieving the Sustainable Development Goals, particularly when it comes to disabilities and autism,” Ms. Hossain said. So too is convincing policy makers to prioritize a disability that affects just one to two percent of the population in countries with more widespread public health challenges such as access to sufficient food and safe water, she added.

“While there are many challenges, there are many opportunities with regard to the Sustainable Development Goals,” Dr. Bogard said. “Global change begins here,” she added referring to the recommendations that will come out of the day’s panel discussion.

Early progress
In addition, several panelists shared insights from their work with individuals and families affected by autism and other developmental disabilities and mental health conditions.

“We are moving from awareness, to acceptance, to appreciation of the differences in people with autism,” Dr. Shore said. “Rather than looking at autism as a disordered way of being, we’re beginning to look at autism as a different way of being.”

Dr. Rosell-Ubial noted that the Philippines has already passed laws to ensure the rights of persons with disabilities. In collaboration with Autism Speaks and Autism Hearts Philippines, the country is also implementing the WHO Parent Skills Training program, starting in areas stricken by Typhoon Haiyan.

And Mr. Obermeyer noted that the Parent Skills Training Program is part of WHO’s larger Mental Health Global Action Program.

In the coming months, the panel organizers will be circulating a draft document that encapsulates the day’s discussions and proposes actions that can become part of the Sustainable Development Agenda. 

By Karen Baliff Ornstein, senior marketing manager at the publisher Wiley

Here at Wiley, I’m fortunate to work with a team of colleagues who are creative, collaborative and always thinking about how we can connect the work we do with our communities.

So we asked ourselves, how can we as publishers support Autism Awareness around the world this April?

Many will wear blue on April 2. Many will sneaker-up for an Autism Speaks Walk. In ways big and small, people around the world will support the goal “to change the future for all who struggle with an autism spectrum disorder.”

Then we got it! Give research to the autism community.

We are going to celebrate Autism Awareness month by sharing our scientific autism resources. We want the widest possible group of people to benefit – caregivers, practitioners, family members and more. Together we can share not only studies, but also new insights and potential solutions.

Our staff worked with a team of researchers and other scientists to select some of the most recent research from a variety of journals and books. Now it’s our pleasure to offer free access to this special collection to you – those truly interested in and affected by autism – for the entire month of April. Free to read and share.

What will you find in this collection?

* More than a hundred informative articles (actually 127 at last count) from a variety of top journals, spanning a range of important topics and addressing many real-life situations.

* Information from thousands of researchers, educators, scientists and practitioners, offering global perspectives on how to create an inclusive society, how to support adults with autism, how to understand the enigma of autism, and more.

* Complimentary access to an entire online issue of Autism Research, with a set of special   “Scientific Summaries for Families with ASD.”

* Our best books on autism, with free excerpts on interventions and assessments.

* And much, much more. We hope you can’t resist taking look.

We celebrate Autism Speaks’ commitment to improving the lives of all those affected by autism. We share the goal of increased understanding and awareness of autism. We hope this collection will be useful to you, and encourage you to share it during the month of April.

Access Wiley’s free autism science collection here.

In honor of Autism Awareness Month, the National Institute of Mental Health (NIMH) and the Office of Autism Research Coordination invite the autism community and the general public to watch live webcasts of two special talks: "In a Different Key: the story of Autism Then and to Come" and "Pathways to New Treatments in Autism Spectrum Disorder." 

In addition, the next full meeting of the Interagency Autism Coordinating Committee (IACC) will be held in April, with the public invited to attend in person or remotely through live streaming or conference call.

All three events will held at the National Institutes of Health main campus, in Bethesda, Maryland, and will be webcast live from the NIH Video Cast Home.

* April 11, from 3 to 4 pm Eastern, John Donvan and Caren Zucker will discuss their New York Times best-seller: In a Different Key: The Story of Autism Then and to Come.Learn more here.

* April 13, from 1 to 2 pm Eastern, Columbia University child psychiatrist and autism researcher Jeremy Veenstra-VanderWeele will discuss “Pathways to New Treatments in Autism Spectrum Disorder,” as part of the NIMH seminar series – New Discoveries in Mental Health Research. Learn more about the webcast here, and learn more about Dr. Veenstra-VanderWeele’s Autism Speaks research projects here.

* April 19, from 9 am to 5 pm, the IACC will convene its next full committee meeting. Learn more here.

Webcasts of all the above will be available on the day of the event at http://videocast.nih.gov.

Subscribe to a daily feed of Autism Speaks Science News here.

A new meta-analysis of studies strengthens the conclusion that autism risk is lower when pregnancies are spaced a year or more apart. The findings are in line with broader research showing that short birth intervals pose a number of medical risks for both mothers and babies born too closely behind an older sibling.

The new report, by researchers with the World Health Organization and US Office of Population and Reproductive Health, appears today in Pediatrics. Its analysis encompasses more than a million children in previously published studies on pregnancy interval and autism risk.

The analysis associates subsequent pregnancy intervals of three to four years with nearly half the autism risk as pregnancies spaced closer than 12 months. The analysis also suggests a modestly increased risk when one pregnancy follows another by less than two years. At the same time, the analysis found that the overall risk of autism remained relatively low - generally under one percent - even among children born from pregnancies that began less than a year after a previous one.

What’s behind the link?
The studies did not show why short pregnancy intervals may predispose to autism. But the authors discuss some possibilities:

* The link between short pregnancy intervals and autism may be related to nutritional factors such as folate insufficiency. Folate (vitamin B-9) is crucial for healthy prenatal brain development. But a woman’s folate levels can remain low for up to 12 months after a pregnancy. In 2013, a landmark study found that a prenatal supplement containing folic acid (the synthetic form of folate) can significantly reduce the risk of autism if taken in the weeks before and after conception (regardless of pregnancy spacing).

* Another factor may be inflammation, which can remain elevated in the mother’s body for 9 to 10 weeks after she gives birth. A number of studies have suggested that maternal inflammation during pregnancy can affect brain development in ways that predispose to autism.

“At this point, all we can say with confidence is that healthy pregnancies are of the highest importance,” comments developmental pediatrician Paul Wang, Autism Speaks head of medical research. “Women who are pregnant or thinking of having a baby should consult with their doctors to help promote optimal health in areas such as nutrition, weight, management of any chronic conditions and being up to date on appropriate immunizations.”

Additional insights
The analysis produced a number of additional findings:

* The association between short pregnancy interval and autism was strongest for the subtype of autism formerly called “autistic disorder.” This subtype is generally placed on the more-severe end of the autism spectrum and often associated with intellectual disability and seizures.

* By contrast, there was no strong association between short pregnancy interval and the autism subtypes formerly known as Asperger syndrome and PDD-NOS (pervasive developmental disorder not otherwise specified). These two subtypes generally fall on the “milder” end of the autism spectrum and tend to be associated with normal to high intelligence.

* Three of the autism studies in the analysis looked at pregnancy intervals longer than five years. They found a small but significant increase in risk. More research is needed to verify and understand this association, the new report concludes.

* Analysis of three separate studies on pregnancy spacing and developmental delay likewise found increased risk with shorter pregnancy intervals. The risk dropped with each additional month between pregnancies up to 5 years.

* Analysis of two studies on pregnancy interval and cerebral palsy found increased risk with very short pregnancy intervals of under 6 months.

For past coverage of related research, also see: “Autism Risk Lowest when Pregnancies Spaced 2 to 5 Years Apart.”

Subscribe to a daily feed of Autism Speaks Science News here.

Over the past two years, Autism Speaks has partnered with the Data Resource Center for Child and Adolescent Health to make autism-related statistics and other resources accessible and useful to individuals and families affected by autism. This included the creation of the interactive Pathways to Diagnosis and Services data portal  on the Data Resource Center’s website.

To complement this interactive information portal, the center has published a “chart book” to highlight some of the ways that people in the autism community have used and can use the information in the Pathways portal.

Experience Matters: A View into the Health and Wellbeing of US Children and Families with Autism Spectrum Disorder is available for free download. (Follow the title link.)

“Our goal for the new Experience Matters autism chart book is to provide a comprehensive portrait of the rich and complex experiences of children and families with autism,” says Christina Bethell, director of the Child and Adolescent Health Measurement Index. “We are struck by the stories told by the data – of resilience, family impact, health equity and opportunities for improving community systems of care and well-being for these children and their families.”

The book’s format is designed for easy use by families, service providers, policymakers and all who work on behalf of advancing the well-being and quality of care for children and families affected by autism, Dr. Bethell adds.

Stay tuned for the launch of Pathway’s autism-specific portal. It promises to fast-track users to a trove of autism-related information from the Data Resource Center for Child and Adolescent Health. This will include revealing statistics from the National Survey of Children's Health and the National Survey of Children with Special Healthcare Needs

In addition, the portal will invite users to explore the ways that its autism data has already been put into action. Examples include a recently published study documenting higher rates of developmental disabilities among families facing financial struggles and mental health challenges.

“The purpose of this project is to make high-quality, national autism research data easy to access and even easier to use for researchers, policy makers, advocates and even families," comments Michael Rosanoff, Autism Speaks director for public health research. “After all, what good is autism research data if only few can accesses it and even fewer know how to use it?”

To learn more about how to use the Pathways portal, also see:

Autism Speaks & Child Health Data Resource Center Launch Public Portal

As a growing wave of children with autism reach adulthood, a new study delivers an important snapshot of the costs of services for adults with the disorder. According to the analysis, the California Department of Developmental Services spent, on average, more than $26,500 per adult with autism in the 2012-2013 fiscal year.

Overall, the costs were skewed toward adults whose autism was complicated by intellectual disability, which affects an estimated one third of people on the autism spectrum. In addition, the researchers found stark differences between services provided to different racial groups.

The study, funded by Autism Speaks and the National Institute for Occupational Safety and Health, appears as an open-access report in PLOS-One.

Most expensive services
Across all age groups, the analysis identified the most expensive services provided to many, though certainly not all, adults with autism. These included:

* Community care (live-in) facilities, at an average of $43,867 per person per year.

* Day-care programs, at an average of $11,244 per person per year.

* Out-of-home respite, at $5,268 per person per year

* Employment support, at $4,957 per person per year

* In-home respite, at $3,059 per person per year

In addition, a catch-all category of support services averaged out at $13,517 per person per year. It included 18 categories of spending including crisis intervention, behavior management and home health agency services.

Growing need for public and private funding
“We know that all of society benefits when we provide the supports that enable people with autism to reach their highest potential as valued members of our communities,” says Michael Rosanoff, Autism Speaks director for public health research. “That’s why Autism Speaks continues to fund research that can inform and alert public health agencies, legislators, autism advocates and other community and national leaders to the need for adequate funding for such programs.”

"These findings reinforce the need for public policies that prioritize timely access to supports and services for people with autism,” agrees Lorri Unumb, Autism Speaks’ vice president for state government affairs. "The findings also highlight the need for high-quality interventions in childhood, which can substantially reduce the need for costly services and supports in adulthood,” she adds.

The analysis did not include the cost of educational or medical services. Medical costs are likely to be significantly higher for many people with autism, as the condition is associated with high-rates of many health issues including epilepsy, anxiety disorders, depression and gastrointestinal problems. 

Higher costs with intellectual disability
In a supplementary table, the researchers compare the average costs of services provided for different age groups depending on whether a person’s autism involved intellectual disability. For example, the cost of services for adults ages 25 to 34 was $20,734 on average for those who had autism without intellectual disability. For the same age group, the average spending per person went up to $37,876 for autism with intellectual disability.

Annual costs for children
The researchers also estimated average state disability spending for children with autism at approximately $10,500 per child per year. However this did not include the cost of special-education classes and classroom-support services.

Racial differences in accessing services
The researchers also found racial differences in autism-related state disability spending. These differences were most prominent for adults. Compared to spending on white adults, average per-adult expenditures were nearly $13,000 lower for Hispanics, $8,000 lower for Asians, $6,000 lower for Native Americans and Pacific Islanders, and $4,000 lower for African Americans.

Compared to white children, average per-child spending was close to $2,000 per person lower for African Americans and Hispanics. Differences between whites and other racial groups were small.

“The reasons for these disparities deserve investigation,” says Paul Leigh, the study’s lead author and an economist with the Center for Healthcare Policy and Research at the University of California, Davis. “It could be related to the locations of [California Department of Developmental Services] regional offices around the state and the variable costs and availability of services in those areas. But average per-person spending on autism should not differ this much. There are no distinctions in the services needed by people with autism based on race or ethnicity.”

Rising costs ahead
“The goal of the study was to provide public health agencies and nonprofit groups financial estimates that can guide their plans to meet the increased demand for services in the years ahead,” Dr. Leigh concludes. “Until now there have been very few studies on the costs of autism among adults.” This represented a serious gap in our knowledge, given the unprecedented numbers of children diagnosed with autism, Dr. Leigh adds. “As these children age into adulthood, there will be pressing demands on employment support, housing, transportation and other services traditionally provided by governments and nonprofit organizations.”

To learn more, also see:

Lifetime costs of autism average $1.4 million to $2.4 million
 

Subscribe to a daily feed of Autism Speaks Science News here.

The public is invited to attend or view tomorrow’s full meeting of the Interagency Autism Coordinating Committee (IACC). As always, the meeting will include a public comment period (in person only by pre-registration), as well as updates on scientific research and legislative action.

View the day's agenda here.

The meeting will be live streamed via the National Institutes of Health videocast page here.

The meeting will take place at the main NIH campus, in Bethesda, Maryland. Click here for directions.

After the meeting, look for Autism Speaks coverage at www.autismspeaks.org/science. 

On the occasion of Autism Awareness Month, the Interagency Autism Coordinating Committee (IACC) and the Office of Autism Research Coordination have released three new reports:

* 2015 IACC Summary of Advances in Autism Spectrum Disorder Research– summarizing the IACC’s selections for the top twenty research articles of 2015

* 2014 IACC Summary of Advances in Autism Spectrum Disorder Research– summarizing the IACC’s selections for the top twenty research articles of 2014

* 2011-2012 Autism Spectrum Disorder Research Portfolio Analysis Report– reporting on autism research funded by federal agencies and private organizations, and elaborating on data initially released in 2014 as a part of the 2013 IACC Strategic Plan Update. These data sets are also available through the new IACC/OARC Portfolio Analysis Web Tool.

Both “top advances” publications are organized in a lay-friendly manner by topic of interest, including:

“When should I be concerned?”

“How can I understand what is happening?”

“Which treatment and interventions will help?”

“Where can I turn for services?”

and

“What does the future hold, particularly for adults?”

The authors of the “top papers” selected by the IACC included more than a hundred researchers funded by or otherwise affiliated with Autism Speaks. They included Autism Speaks Senior Vice President for Public Health Research Andy Shih and Paul Shattuck, a member of the Autism Speaks Family Services Committee and director of the Life Course Outcomes Research Program of the AJ Drexel Autism Institute, in Philadelphia. Dr. Shih co-authored “Approaches to enhancing the early detection of autism spectrum disorders: a systematic review of the literature.” Dr. Shattuck co-authored the “National Autism Indicators Report: Transition into young adulthood.” 

For more information about the IACC’s publications and activities, please visit the IACC’s website at: www.iacc.hhs.gov.

The autism community is invited to join a free online symposium: "Special Genes, Special Functions: All about genomic imprinting and its implications for autism research, on May 4, 2016, from 1 to 2 pm Eastern.

The lecture and question period that follows are part of the ongoing “New Frontiers in Autism Research: Environmental Epigenetics Symposium” series. Autism Speaks is pleased to collaborate with the Escher Fund for Autism and the Autism Science Foundation in sponsoring these free webinars.

On May 4, geneticist and neurobiologist Christopher Gregg, of the University of Utah, will present and discuss:

* An overview of genomic imprinting

* It’s role in brain development

* Related scientific advances 

* Implications for autism research

Chromosomes from the mother and father do not express themselves equally in a child due to heritable epigenetic marks, called genomic imprints, which form at genetic sites in the egg and sperm. Imprinted genes preferentially express either the maternally or the paternally inherited gene copy (allele). The Gregg Lab has uncovered a vast array of complex mechanisms that suggest distinct maternal and paternal gene expression patterns in the brain.

Pre-registration is required and free here.

You can watch past epigenetics of autism webinars. Just click on the hyperlinked titles:

Early Germline Events in the Heritable Etiology of ASDs, featuring germ cell biologist Amander Clark and geneticist Ryan Yuen, of the University of Toronto and the Autism Speaks MSSNG project.

Environmental Exposures and the Germline: Investigating Causes of Epigenomic and Genomic Errors, with developmental biologist Dana Dolinoy, of the University of Michigan, and genetic toxicologist Carole Yauk, of Health Canada.

For more information on this free symposium series, contact Autism Science Foundation Chief Science Officer Alycia Halladay: ahalladay@autismsciencefoundation.org.

On Tuesday, April 19, the Interagency Autism Coordinating Committee (IACC) convened its quarterly meeting to discuss advances and issues in autism research and legislation.

The IACC is a federal advisory committee that offers guidance to the U.S. Department of Health and Human Services (HHS) and works across federal agencies to coordinate activities in consultation with the autism community. The meetings are open to the public and include a public comment period for pre-registered speakers.

Below are highlights from the meeting:

New National Autism Coordinator
IACC Chair Bruce Cuthbert introduced Thomas Novotny as the newly appointed National Autism Coordinator. An epidemiologist and family physician, Dr. Novotny has a long history as a researcher and currently holds the position of HSS Deputy Assistant Secretary of Health.

“Obama encouraged us to support all of those with autism spectrum disorder, and I’m delighted to be part of this today,” Dr. Novotny said. He promised to “enhance coordination efforts across HHS to better address the needs of people on the autism spectrum.”

Wandering and benefits programs advance
During the morning legislative discussions, Stuart Spielman, Autism Speaks’ senior policy advisor and counsel, presented updates on federal and state policies affected the autism community.

Mr. Spielman noted that the Office of Personnel Management, which manages the Federal Employees Health Benefits Program, has directed its carriers to include coverage of applied behavior analysis (ABA) starting next year. The program is the nation's largest employer-sponsored health benefits program, covering 8.2 million federal employees, retirees and dependents. (For more information, see our related news report here.)

Mr. Spielman also updated the committee on the progress of the safety and wandering legislation known as Kevin and Avonte’s Law, which recently passed a key Senate Judiciary Committee. He also shared the news that state ABLE legislation has now been enacted by more than 40 states.

Public comment
The following speakers participated in the meeting’s public comment period:

Nathan Olson described how he owed his academic success to the Autism Spectrum Navigators Program, at Bellevue College, Washington. “I was diagnosed with autism at age 22,” he said, “and that diagnosis changed the course of my life and transformed my perception of self.” Mr. Olson described how he had experienced tremendous academic failure before the diagnosis. After the diagnosis, he said, Bellevue College’s “Navigators” autism support program “gave me the opportunity to fulfill the dream of graduating from college.”

Dorothy Strickland, of Virtual Reality AIDS, Inc., described her development of a multimedia tool to train psychology students how to diagnose autism spectrum disorder. She asked the committee for guidance on how best to get her tool into the hands of those who could benefit from it. Read more about the tool here.

Karen Heffler, an ophthalmologist and mother of a 24-year-old with autism, discussed how her review of scientific literature has led her to conclude that early exposure to electronic screen media contributes to the development of autism in children predisposed to the condition. “Research is desperately needed in this area,” she said. The American Academy of Pediatrics recommends against screen viewing for children under age 2, she noted, adding that the recommendation is widely ignored.

Lisa Wiederlight, executive director of SafeMinds and the mother of a 15-year-old with autism, criticized the recent autism prevalence update from the Centers of Disease Control and Prevention (CDC). The report found that autism’s estimated prevalence had remained unchanged – at 1 in 68 – since two years previous. “This defies human observation,” she said. Ms. Wiederlight called on the CDC to use more accurate methods for estimating the conditions prevalence in the U.S. (For more on the new prevalence report, see “CDC's update on autism: What you need to know.”)

The full text of the public comment period’s oral remarks can be found here. Written public comment sent for distribution to the committee can be found here.

Research updates
The afternoon’s sessions involved updates on studies of particular interest to the committee and autism community

Bolting and auditory sensitivity
Pediatrician Paul Lipkin and public-health specialist Kiely Law, of the Interactive Autism Network (IAN), presented the preliminary findings of a new study on auditory hypersensitivity as a trigger for bolting or wandering. This research is a follow-up study growing out of IAN’s earlier autism and wandering online survey. (See slide below.)

In this follow-up survey with 814 parents of children with autism:

* More than 77 percent reported that their child had hypersensitivity to particular sounds.

* Nearly half of these parents (42 percent) reported that their children tried to run away from the sound.

* More than half (63 percent) reported that related problems occurred weekly.

* Just over a quarter (26 percent) reported daily problems.

* Overall, the majority of parents reported that they had not found a satisfactory solution to the problem.

* And in a surprise finding, nearly a third (30 percent) of parents reported that certain sounds could trigger seizures in their child.

As part of the wandering update, Wendy Fournier, of the National Autism Association, discussed the urgent need for better solutions for autism-related wandering, noting the tremendous danger. Records suggest that wandering incidents prove deadly nearly a third of the time (31 percent) when they involve children with autism age 13 or under.

Adult therapies for autism
Shaun Eack, of the University of Pittsburgh School of Social Work, reported on the promising early results of his Autism Speaks-funded clinical study on the effectiveness of cognitive enhancement therapy for young adults who struggle with autism-related behaviors. He noted the dearth of research on autism interventions for adults. The cognitive enhancement approach combines therapeutic computer games that exercise attention and problem solving with small group coaching centers partly led by the participants.

As an early indicator of the program’s success, Dr. Eack noted a rise in employment rate among study participants from 20 percent at the beginning of the 18-month intervention to more than 60 percent at the study’s end. This contrasted to no change in unemployment rate in a comparison group that received emotional management training. (See slide below.)

Transcranial magnetic stimulation
John Robison, a self-advocate and neurodiversity scholar at the College of William and Mary, discussed his experience participating in studies evaluating transcranial magnetic stimulation (TMS) as potential autism therapy. He noted the stark difference between the academic report that resulted from the research and his personal experience. “The life-changing experiences I and other have had with TMS were due to what the researchers would have called side effects,” he said. In their study, the researchers measured behavioral and perceptual changes immediately after the TMS sessions, he noted. In contrast, the emotional insights he experienced were often hours or days later. (To learn more about TMS and autism, see “Transcranial magnetic stimulation for autism: Evidence of benefit?”

Autism BrainNet
During closing remarks, Autism BrainNet Director David Amaral reported on its collaborative efforts with the NIH NeuroBioBank. Autism BrainNet is a collaborative program of the Simons Foundation and Autism Speaks. The collaboration aligns two of the world’s largest repositories of donated postmortem brain tissue for medical research. “We are discussing methods for distributing tissue that is now coming in at greater pace,” he said. “This is turning out to be a very successful public-private collaboration. (To learn more, see “NIH and Autism BrainNet align resources for brain research.”)

The next quarterly meeting of the IACC will be July 19, 2016.

In the coming week, a full webcast of the April 19 meeting will be archived and available for viewing here.

Today, the Simons Foundation Autism Research Initiative (SFARI) announced the launch of SPARK, an online initiative designed to engage 50,000 people with autism and their families in autism research. Participants will have the opportunity to contribute a DNA saliva sample for analysis along with medical and behavioral information.

SPARK stands for Simons [Foundation] Powering Autism Research for Knowledge. The national initiative aims to connect families affected by autism to research opportunities that advance understanding of autism.

“Efforts like SPARK continue to underscore the critical nature of genetic data in understanding the roots of autism and developing more effective therapies for it,” says Mathew Pletcher, Autism Speaks interim chief science officer. “SPARK should prove to be an important complement to our own MSSNG program. Together, these two programs have great potential to open an era of personalized and precision medical care and services for all of those with autism.”

Over the next year, SPARK registration information will be available at more than two dozen Autism Speaks Walks nationwide. Each is near one of SPARK’s 21 clinical sites, which include Autism Speaks Autism Treatment Network centers in Philadelphia; Cincinnati and Columbus, Ohio; Columbia, Missouri; and Nashville, Tennessee.

“SPARK will help researchers make new discoveries that will ultimately lead to the development of new supports and treatments to improve the lives of people living with challenges,” says Wendy Chung, the project’s principal investigator and SFARI’s director of clinical research.  “Together we can SPARK a movement in autism research.”

Registering for SPARK can be done online at no cost. Participants who agree to share their DNA will receive saliva collection kits. Once a participating family has returned saliva samples and completed a medical and family history, they will receive a $50 gift card. SPARK will also provide participants with access to online resources that include information designed to help them meet their daily challenges.

Qualified researchers are invited to recruit SPARK participants for their studies.

To learn more click here.

Autism Speaks lauds the US Food and Drug Administration (FDA) for its newly proposed ban of electrical stimulation devices (ESDs) designed to curb self-injurious or aggressive behavior – a practice largely focused on children and adults severely affected by developmental disorders such as autism.

In its statement, Autism Speaks affirms:

Painful aversive conditioning has no place in the treatment of autism or any developmental disorder. Autism Speaks applauds the FDA’s proposed ban on electrical stimulation devices, particularly their use with children and adults with developmental disabilities that prevent them from communicating their pain, their needs and their consent to such treatment.

Virtually all autism centers and mental health hospitals in the United States have disavowed aversive shock therapy. However, the practice remains legal in the U.S, and one educational center for children with severe developmental disabilities has been widely criticized for manufacturing and using the devices.

“The FDA takes the act of banning a device only on rare occasions when it is necessary to protect public health,” the agency announced in its related press release. “The medical literature shows that ESDs present risks of a number of psychological harms including depression, post-traumatic stress disorder, anxiety, fear, panic, substitution of other negative behaviors, worsening of underlying symptoms and learned helplessness (becoming unable or unwilling to respond in any way to the ESD); and the devices present the physical risks of pain, skin burns, and tissue damage.”

Read the FDA's proposed ruling in the Federal Register here. It will remain open for public comment until May 25, 2016.