Science News | Autism Speaks

Free Seminar on Role of Immunology, Genes and Environment in Autism

Jessica Sachs — Wed, 22 May 2013 05:00:44 PDT

Leading autism researchers will present & answer questions via webstream as well as in person at UC-Davis

May 22, 2013

Autism Speaks, the Autism Research Institute and the MIND Institute at the University of California-Davis invite researchers and the public to attend “Immunological Factors, Genes and the Environment in Autism: from Research to Treatment.” The educational session will take place Saturday, June 1, from 8:30 am to 12:30 pm Pacific Time at the UC-Davis MIND Institute.

The session is free both online (webstreamed) and in person, but requires registration. For more information and registration, click here.

Autism researchers Reymundo Lozano, Pamela Lein and Judy VanDeWater will discuss research in the role of immunological factors in the development of autism spectrum disorder (ASD). They will both summarize current research and present their own findings.

Immunological research has led to the discovery of autoantibodies that target brain proteins in children with autism and their mothers. In particular, these include maternal autoantibodies directed towards fetal brain proteins that are highly specific for autism. This finding has great potential as a biomarker for autism risk and may provide a target for future medicines and prevention measures. Other research suggests that some forms of autism may involve problems in the signaling pathways shared by the immune and central nervous systems.

The presentations will be followed by a question and answer period that will be open to the public via webcast and Twitter. Continuing education credits will be available. Please register at http://www.regonline.com/ASD-Series.

DSM-5 Takes Effect; Please Share Your Experiences

Jessica Sachs — Sat, 18 May 2013 07:00:00 PDT

A letter and personal invitation from Autism Speaks Chief Science Officer

May 18, 2013

Dear friends,

At its annual meeting this weekend, the American Psychiatric Association released the long-anticipated fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Clinicians across the United States and much of the world use DSM to diagnose neuro-developmental disabilities such as autism spectrum disorder (ASD).

Over the last two years, Autism Speaks has taken a proactive role to help ensure that the DSM-5’s revised criteria for ASD would not result in a loss of diagnosis or services for affected individuals. Please see our DSM-5 Frequently Asked Questions and DSM-5 News and Updates for more information and background.

Now we need your help. We want to hear from individuals, families, teachers, therapists, physicians and others who are using the new diagnostic criteria or being affected by them – either directly or indirectly.

We’ve created more than a forum for discussion. We’ve developed two surveys – one for individuals and families affected by autism and one for professionals. And we’ve designed them in a way that will allow us to analyze the results and provide powerful feedback to the American Psychiatric Association and the autism community. (No identifying information will be shared.)

Please visit our DSM-5 Survey page here to access the surveys and more information on the DSM-5 and what it may mean for you.

Likewise please know that we are here for YOU. You can reach our Autism Response Team at 888-288-4762 (en Español 888-772-9050) or email familyservices@autismspeaks.org.

I’d also love you to join me and our Vice President for Family Services Lisa Goring for a live webchat at 7 pm Eastern tonight, Monday, May 20. Bring your questions and join the chat here.

Together we can improve the lives and transform the future of all those affected by autism.

Warmest regards,

Geraldine Dawson, Ph.D.
Chief Science Officer, Autism Speaks

Autism a Major Piece of the Child Mental Health Picture

Andrew Leonard — Thu, 16 May 2013 14:33:38 PDT

CDC releases new report on the prevalence of child mental health conditions in the U.S.

May 16, 2013

In an effort to present a comprehensive picture of child mental health conditions in the United States, the Centers for Disease Control and Prevention (CDC), for the first time, released a comprehensive report today on “Mental Health Surveillance Among Children” in the U.S. from 2005-2011. The new report summarizes findings from numerous research studies and data sources used to monitor the occurrence of various child mental health conditions, including autism spectrum disorder, in the community.

Described as “serious deviations from expected cognitive, social, and emotional development,” mental disorders are known to affect 13% – 20% of children and cost society an estimated $247 billion annually. Further, the prevalence of many child mental health conditions is increasing over time. The current report found the most common child mental health conditions among children aged 3-17 years to include attention-deficit/hyperactivity disorder (6.8%), behavioral or conduct problems (3.5%), anxiety (3.0%), depression (2.1%) and autism spectrum disorders (1.1%).

As reported last March, Autism is estimated to affect 1 in 88 children (1.1%) in the U.S., based on data from the Autism and Developmental Disabilities Monitoring (ADDM) Network. However, in the more recent National Survey of Children’s Health (NSCH), parents reported that 1 in 50 school-age children (2%) have an autism spectrum disorder. This strongly suggests that we are significantly underestimating prevalence and that autism is an urgent public health issue requiring a national public health response.

“This is a realization of just how common autism and other child mental health conditions are in the U.S.,” said Michael Rosanoff, associate director of public health research at Autism Speaks. “Now we must understand how individuals with autism may be at risk for co-occurring mental health conditions, and to urgently make appropriate and affordable supports available.”

The report published today as a supplement in the Morbidity and Mortality Weekly Report, further highlighted the importance of ongoing child mental health surveillance efforts in the U.S., supported and managed by numerous Department of Health and Human Services divisions including the CDC and the National Institutes of Health (NIH). In addition to measuring prevalence of these conditions, surveillance systems allow for collection of data on co-morbid medical conditions, access to healthcare services and quality of life.

“Child mental health issues start early and so should services,” said Liz Feld, President of Autism Speaks. “Increased detection, treatments, and resources for children with mental health conditions and their families must happen at the community level, with support at the national level.”

A New Way to Support Those with Autism; a Mission to Improve Diagnosis

Jessica Sachs — Wed, 15 May 2013 07:21:13 PDT

State-of-the-art facility combines research, comprehensive care and community support for all ages in an autism-friendly environment

May 15, 2013

This week, NewYork-Presbyterian Hospital is preparing to officially open the doors to its new Center for Autism and the Developing Brain. The facility, located at the hospital’s Westchester campus, combines research and comprehensive care across the lifespan.

New York Collaborates for Autism, led by Laura Slatkin and Ilene Lainer, supported and guided the center’s creation. Additional funding came from Autism Speaks, whose co-founder Bob Wright is a hospital trustee. Marilyn and Jim Simons, of the Simons Foundation, also provided support, as did the Mortimer D. Sackler Foundation. Through NewYork-Presbyterian, the center is affiliated with the medical colleges of both Cornell and Columbia universities.

Autism Speaks takes pride in partnership
Autism Speaks has committed $1 million to support the center, which it considers a new model for delivering lifetime care. In addition, a portion of proceeds from the “2013 Westchester/Fairfield Walk Now for Autism Speaks” will be donated to the center. The Walk is being held June 2, on NewYork-Presbyterian’s Westchester campus.

“The vision behind this center is extraordinary,” says Wright. “It represents the ultimate in care. From the earliest days of diagnosis, it anticipates the needs of each person, while recognizing his or her potential as a contributing member of the surrounding community.”

The center’s integrated approach includes psychiatrists, psychologists, therapists, behavior and education specialists and social workers, along with other medical specialties. The center also serves as a referral hub connecting individuals and families to community services.

Providing care while advancing diagnosis and treatment
“By evaluating the strengths and weaknesses of each patient and by measuring that individual’s response to a variety of approaches, we will fine-tune our ability to deliver the best possible treatments,” says center director Catherine Lord, M.D. Dr. Lord is a professor of child psychiatry at Weill Cornell Medical College.

One of the center’s special missions will be to improve autism diagnosis. Diagnosis of autism spectrum disorder (ASD) remains an imprecise science, says Dr. Lord, who helped develop today’s leading diagnostic methods.

The facility has already established a research and training program in collaboration with universities and medical centers around the world. This allows individuals and families to participate in studies on advanced treatments and support services. With patient consent, the center will also share anonymous genetic information with scientists searching for biomarkers to improve understanding and treatment of autism.

“The Center for Autism and the Developing Brain is exemplary in its mission to provide comprehensive autism services from infancy through adulthood,” says Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “This lifetime perspective will help ensure that each individual reaches his or her potential as an adult. It will also serve as a model for other centers aspiring to provide comprehensive lifetime care.”

An autism friendly environment
In design, the center creates an autism-friendly environment. Its “treatment village” emphasizes open architecture and natural light. Pavilions with activity and treatment areas surround a central square and garden. Other autism-friendly design elements include sound dampening, soft carpeting and color-coded rooms.

Environmental Epigenetics of Autism Symposium: Presentations Online

Jessica Sachs — Fri, 10 May 2013 02:50:27 PDT

Videotaped scientific presentations available for free viewing

May 10, 2013

The organizers of last month’s symposium: “Environmental Epigenetics: New Frontiers in Autism Research” have posted videotapes of its scientific presentations for free viewing at www.autismepigenetics.org.

Nearly a hundred researchers and other participants attended the symposium at the UC-Davis MIND Institute. Autism Speaks, the MIND Institute and the Escher Fund for Autism co-sponsored the event.

Attendees discussed research on the relationship between environmental exposures, gene expression and brain development.

Broadly speaking, epigenetic information controls when and where genes turn on and off. Epigenetic control of gene expression is crucial for normal brain development. A growing body of research suggests that environmentally induced changes to epigenetic chemicals may play a role in some forms of autism.

The meeting’s sessions focused on issues of scientific interest, including whether environmental factors such as endocrine-disrupting chemicals can alter epigenetic information in eggs and sperm in ways that can harm brain development.

In brainstorming sessions, researchers and other members of the autism community discussed potential research projects to address these and other questions relating to role of environmental factors in autism. These avenues of research have implications for the development of treatments and strategies to reduce risk.

Event organizers included Alycia Halladay, Ph.D., Autism Speaks senior director of environmental and clinical sciences, autism advocate Jill Escher and researchers David Crews, Ph.D., Dani Fallin, Ph.D., and Janine LaSalle, Ph.D.

For more perspective on autism and epigenetics, see Dr. Halladay’s related post on Autism Speaks blog.

Dennis Wall Wins IMFAR Award for Research on Quick Diagnostic Test

Jessica Sachs — Thu, 09 May 2013 09:05:34 PDT

Promising diagnostic test for autism asks parents to answer 7 questions and upload short home video; more families needed to participate

Promising diagnostic test for autism asks parents to answer 7 questions & upload short home video; more families needed to participate

May 09, 2013

With a simple checklist, college students quickly and accurately rated home videos such as this one for autism-related behaviors.

The average waiting time for an autism diagnosis is 13 months and requires that a highly trained professional administer one of two behavioral tests. The Autism Diagnostic Observation Schedule (ADOS) takes 90 minutes. The Autism Diagnostic Interview-Revised (ADI-R) takes up to three hours.

Dennis Wall, Ph.D., is leading a team at Harvard Medical School that is trying to clear the logjam with a short, practical screen for autism. At this year’s International Meeting for Autism Research (IMFAR), Dr. Wall received the prestigious Slifka-Ritvo Innovation in Autism Research Award for this clinical research. The award comes with a research grant to further test the screen for reliability.

Dr. Wall directs Harvard Medical School’s Computational Biology Initiative. He is also an advisor for bioinformatics and genomics at Autism Speaks.

Early results suggest high accuracy
Dr. Wall's screening tool asks parents to answer seven questions and upload a 5-minute home video of their child in a social situation such as a play date or birthday party. With minimal training, college students score each video against a checklist for eight autism-related behaviors. In early assessment with more than 100 families, the short screen matched the results from a full clinical evaluation around 90 percent of the time.

Dr. Wall’s team developed the test by using “machine learning,” an automated approach for recognizing patterns. They used it to hone in on the most important information being gleaned by the ADOS and ADI-R diagnostic checklists. They then used this information to create the short parent questionnaire and develop simple instructions that nonprofessionals could use to evaluate the home videos.

Families invited to participate through website
To further test and improve their screening tool, Dr. Wall’s team is reaching out to parents whose children have received a full diagnostic evaluation for autism. Families can fill out the brief questionnaire and upload a home video at this website.

“The award is a tremendous honor and an opportunity to help move our work into clinical and practical settings where it will have real impact on families,” Dr. Wall says. “We hope further testing over the next several months will provide the data needed to begin offering this solution to families. Our goal is to make early detection and treatment a reality for families across the globe, and we hope this research will be one solid step forward towards that goal.”

Editor's note: Click here for complete coverage of the publication of the DSM-5 diagnostic manual and learn more about how Autism Speaks is taking a proactive role in helping ensure that it does not result in lost services to those affected by autism.

Autism Acceptance on Campus

Jessica Sachs — Fri, 03 May 2013 03:59:04 PDT

Study suggests greater acceptance of autism-related behaviors when college students know a fellow student has autism

May 03, 2013

The transition to college is an understandably anxious time for many students with an autism spectrum disorder (ASD). How will they be accepted by other college students? How open should they be about their autism?

At this year’s International Meeting for Autism Research (IMFAR), investigators described promising evidence that autism awareness brings greater acceptance of related behaviors – at least when college students know that one of their peers has autism.

Researchers at the University of California, Irvine, asked 224 college students to read three vignettes describing social situations on campus. The main character in each story was a college student who behaved in ways characteristic of an individual with autism. This included narrow interests and difficulties with social communication.

The investigators told some of the participants that the young man in the story had autism. Others were told that he was a typical college student. Still others weren’t given any label.

The investigators then used a questionnaire designed to assess attitudes toward persons with disabilities. It included three sets of questions on the students’ thoughts and feelings toward the young man in the stories. One set of questions measured agreement with statements like “We might get along really well.” Another set of questions asked the participants to rate the likelihood that they would “find an excuse” to leave or avoid the young man. A third set of questions gauged the participants’ emotional responses (e.g. nervousness, fear, etc.) to the fictional character.

On the first two measures, students who were told that the young man had autism responded significantly more positively toward him than did the students who weren’t given a label. In other words, they expressed more interest in spending time or becoming friends with him.

The responses of the participants told he was a “typical college student” fell in between the “has autism” label and no label. And there were no significant differences between the three groups on the scale that measured their emotional response.

“The media and scientific awareness and publicity around the autism spectrum over the last few years may have worked to create an accepting attitude on the part of the generation coming to adulthood,” says UC-Irvine doctoral student Nicole Matthews. Dr. Matthews conducted the study with psychologists Agnes Ly, Ph.D., of the University of Delaware; and Wendy Goldberg, Ph.D., also of UC-Irvine.

“This is an exciting finding on many levels,” says Peter Bell, Autism Speaks executive vice president for programs and services. “That researchers are even considering this question brings home that that an increasing number of students with autism are capable of attending college, something that many parents were once told was impossible. Second, disclosing an autism diagnosis may actually be beneficial in how others respond to you. And third, younger generations are starting reap the benefits of growing up with peers living with autism. The motto ‘different not less’ may finally be taking hold.”

For more IMFAR news coverage and blogs, click here.

Boys and Girls with Autism Use Gaze Differently in Social Situations

Jessica Sachs — Fri, 03 May 2013 03:55:04 PDT

Researchers say gender differences in eye-tracking illustrate why more study needed on girls and women with autism

May 03, 2013

Autism studies tend to include few girls and women. In fact, many studies exclude them altogether. In part, this is because many more males than females have an autism spectrum disorder (ASD). As a result, much of what we know about ASD and its treatment comes from research on boys and men. It’s then generalized to girls and women.

That’s a problem, says researcher Jennifer Moriuchi, a psychology student at Atlanta’s Emory University and Marcus Autism Center. As evidence, Moriuchi cites the striking gender-differences that she and her colleagues have discovered in a study that tracks how children and teens with autism pay attention to social cues.

Moriuchi presented the preliminary results of this study at this week’s International Meeting for Autism Research (IMFAR).

Moriuchi and her co-investigators – psychologists Ami Klin, Ph.D., and Warren Jones, Ph.D. –used equipment that allowed them to track the eye gaze of study participants as they watched videos of social interactions. In particular, they tracked how and when girls and boys look at the eyes of people interacting in the video.

Generally, looking at someone’s eyes is an appropriate and effective way to pick up social cues. However, in preliminary results with 81 boys and 35 girls with autism, the researchers found that the boys were more likely than the girls to stray from this typical eye-gaze pattern. Around half of the time, the boys weren’t looking at the central character’s eyes at the appropriate time. The girls in the study diverged from the typical pattern less often.

Do boys and girls use different strategies?
The researchers found a more striking difference when they compared the children’s eye-gaze patterns to their levels of social disability.

Among the boys, more typical eye-gaze patterns were associated with higher social abilities, as might be expected. In the girls, however, the opposite seemed true. The more girls with autism looked at the eyes of the video characters, the more severe were their social disabilities.

“This suggests that the boys’ and the girls’ attention were serving different functions, perhaps reflecting different strategies in their social learning,” Moriuchi says.

Urgent need for more research on girls and women
At present, the Emory researchers can’t explain the gender differences they found. They have begun to look for insights by enrolling boys and girls in eye-tracking studies beginning in infancy.

One fact is clear, they say. These findings are calling attention to the inappropriateness of routinely applying findings on boys and men with autism to understanding and treating autism in girls and women.

“Girls’ social learning needs to be studied in its own right,” Moriuchi says. “To date, our study seems to suggest that gender is an important element to be considered in individualizing therapy for autism.”

Eye gaze is something that clinicians consider when conducting diagnostic evaluations for autism, adds Lauren Elder, Ph.D., Autism Speaks assistant director for dissemination sciences. “This study suggests that lack of eye gaze may not be a good marker of social impairment in girls and that assessment of other behaviors may be more helpful. Differences such as this may also have implications for treatment targets and strategies for girls. Clearly, more research is needed.”

More news and blogs from IMFAR here.

Autism Speaks and Simons Foundation Create New Brain Tissue Network

Jessica Sachs — Thu, 02 May 2013 05:35:03 PDT

Autism BrainNet will acquire, prepare and distribute the precious gift of brain tissue to advance autism research

May 02, 2013

Autism Speaks and the Simons Foundation are establishing and funding a new network to advance autism research through the precious gift of postmortem brain donation. They announced the creation of the Autism BrainNet today at the International Meeting for Autism Research (IMFAR).

Autism BrainNet grows out of Autism Speaks Autism Tissue Program (ATP) and other brain banks. It will create a multi-site network for acquiring, preparing, storing and distributing brain tissue to qualified researchers advancing our understanding of the biological basis of autism.

“Brain donation is a difficult subject for many and takes courage to discuss,” says Gerald Fischbach, M.D., scientific director of the Simons Foundation Autism Research Initiative (SFARI). “But experiments on human brain tissue are now the very best way forward in attempts to improve the quality of life of those on the autism spectrum. Recent research advances demand nothing less than an interactive network of regional nodes as the best way forward.”

Autism BrainNet’s first institutional partners will include Autism Speaks ATP, New York’s Mount Sinai School of Medicine, the University of California MIND Institute and the University of Texas at Southwestern Medical School. In the coming years, the network will partner with additional institutions, both nationally and internationally.

The network’s director will be David Amaral, Ph.D., of the MIND Institute.

Special thanks to Autism Speaks ATP families
“Autism Speaks’ ATP has been the largest program solely dedicated to increasing and enhancing the availability of brain tissue to as many qualified scientists as possible,” said Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “We are excited to greatly broaden its reach in this new network. And we thank all the families who generously donated tissue over the past 12 years.”

Autism BrainNet represents the culmination of a collaboration that has involved key experts in the field of brain banking, both in and outside the autism field. “It is enormously satisfying to see the collaborative efforts of the workgroup delivering on the promises of a model presented to the field for discussion at last year’s IMFAR,” said Robert Ring, Ph.D., Autism Speaks vice president of translational research. “With more than $7.5 million in funding over the next five years, this collaboration between the Simons Foundation, Autism Speaks, and the Nancy Lurie Marks Foundation will be game changing. It has the potential to advance the field of autism brain research in ways previously not possible.”

Autism BrainNet will launch a web portal this fall. It will provide the autism community with access to research results as well as information on how brain research contributes to understanding and treating autism spectrum disorder.

More news and blogs from IMFAR 2013 here. More about Autism Speaks Autism Tissue Program here.

Pivotal Response Training May Improve Brain Responses to Social Cues

Jessica Sachs — Thu, 02 May 2013 05:09:24 PDT

Preliminary study results suggest that PRT improves brain function along with social-communication skills

May 02, 2013

Early results from a preliminary study on Pivotal Response Training (PRT) suggest that its use in young children with autism improves their brain responses to social cues. The improved brain activity corresponded with improvements in the children’s social skills

Kevin Pelphrey, Ph.D., and colleagues from the Yale Child Study Center reported their results at the International Meeting for Autism Research (IMFAR).

The researchers followed six children, ages 4 to 6, who completed four months of PRT. Before and after treatment, the children underwent a noninvasive brain scan. Specifically the researchers used functional magnetic resonance imagining (fMRI) to track activity in parts of the brain associated with sociability.

During the scans, the children viewed videos of moving lights. Some of the lights followed random motion patterns. Others traced human-like motions.

The researchers created the human motion patterns by filming someone moving in a dark room with lights on his major joints. (See image on left.) Previous studies have shown that this type of motion activates social parts of the brain in individuals with typical brain development. By contrast, individuals with autism tend to show little difference in their brain responses to human versus random motion patterns.

During an IMFAR press conference, the researchers described their preliminary results with two children. After 4 months of PRT, both children responded to the human light patterns with significantly more activity in brain regions associated with recognizing social cues. Both children also showed remarkable gains in social and communication skills. The researchers measured these skills using widely accepted checklists of behaviors associated with autism.

Pivotal Response Training
PRT is a form of autism therapy based on the techniques of Applied Behavioral Analysis. PRT therapists interact with children in a play environment. During play, they encourage important social behaviors, or “pivotal responses.” A number of studies have shown PRT to be effective in building new social and communication skills. The Yale study was the first to look for changes in the brain activity associated with social interactions following PRT.

Early Intervention and Improved Brain Function
Last year, a larger, randomized and controlled study of the Early Start Denver Model provided the first scientific evidence that early intervention for autism can improve brain function.

“Such research is of interest for two primary reasons,” comments Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “First, it suggests that early intervention may actually change the course of brain development in children with autism. Second, it suggests that brain scans may help predict who will benefit from a given therapy and provide an objective measure of its benefits.”

Research Continues
With the support of an Autism Speaks grant, the PRT study's lead researcher, Avery Voos, has begun a larger study at the University of California, Santa Barbara. Her continuing research is being made possible through an Autism Speaks Dennis Weatherstone Predoctoral Fellowship.

More news from IMFAR 2013 here.

Robots as Autism Co-therapists

Jessica Sachs — Thu, 02 May 2013 03:35:32 PDT

Study suggests that including interactive robot in therapy helps some children with autism learn social skills that hold up in real life

Study suggests that robot "co-therapist" helps some children with autism learn social skills that hold up in real life

May 02, 2013

It’s become a truism that many individuals with autism gravitate toward gadgets –even preferring them to people. This has inspired great interest in developing devices – including robots – that can interact with individuals on the autism spectrum.

However, little of this research has involved evaluating how effectively robots might be used to help children with autism overcome social-communication disabilities, says University of Notre Dame psychologist Joshua Diehl, Ph.D.

Dr. Diehl presented the promising results of just such a study at this year’s International Meeting for Autism Research (IMFAR), in San Sebastian, Spain.

Dr. Diehl’s team found that a robot “co-therapist” can, in fact, increase gains in social skills among children with autism spectrum disorder (ASD). However, the benefits varied widely from child to child.

The investigators enrolled 19 children – 17 boys and 2 girls, ages 6 to 13. Their communication abilities varied widely. All the children completed 12 one-hour sessions of Applied Behavioral Analysis therapy with a trained human therapist. In six of these sessions, a robot “co-therapist” joined the mix. Hidden from view, a second human therapist operated Kelly. The robot had a distinctly “computerized” voice and limited mechanical movements (reaching, fist pumping, etc.).

Modeling communication
Through the robot, the hidden therapist modeled socially appropriate questions and responses. (“How was your day?” “That is so cool.” etc.) It also encouraged the child to interact with the human therapist in the room.

Roughly half the children received the robot-assisted therapy for their first six sessions. The others interacted with the robot during their final six sessions.

The researchers measured social behaviors with standardized checklists during the sessions and parents filled out similar checklists outside of the sessions. They also recorded the children’s emotional levels using wristband biosensors.

“Overall we found that including the robot co-therapist increased gains in social skills,” Dr. Diehl says. “Importantly, we found that children who learned skills while interacting with the robot would then use these skills with their human therapist and at home.”

Robot boosted gains for most

Across all the sessions, 17 of the 19 children showed an overall improvement in the social skills targeted by the therapy. The majority showed greater gains during the six sessions that included the robot.

However, the children showed great variability in their responsiveness to the robot. For example, Dr. Diehl recalls one child who politely set the robot aside so he could focus on his human therapist.

Importantly, the researchers acknowledge that the cost of two therapists plus a robot would make such an approach impractical for broad use. Instead, the aim was to determine whether or not such an approach could produce real benefits.

Encouraged by the results, the team hopes to adapt “robot co-therapy” into a more practical form. One possibility is for a therapist to use video clips of the robot that could be cued from, say, a laptop in the therapy room, Dr. Diehl says. Another possibility might be to use robots to allow consultants to join therapy sessions from remote locations.

“As parents and therapists know well, the most effective interventions build on a child’s strengths and interests,” comments Lauren Elder, Ph.D., Autism Speaks assistant director of dissemination science. “As they continue their research, we hope these investigators find ways to adapt their findings into practical innovations that make therapy more effective.”

More IMFAR 2013 coverage here.

Early Results from Autism Study: Arbaclofen May Improve Sociability

Jessica Sachs — Wed, 01 May 2013 09:10:55 PDT

If benefits and safety confirmed by additional trials, medicine could become first to treat a core symptom of autism

May 01, 2013

Today, researchers reported the promising results from a clinical trial testing an experimental medicine for increasing sociability in children and young adults with autism. If larger studies confirm its benefits and safety, the compound – arbaclofen – could become the first medicine to treat one of autism’s core symptoms.

“These initial results are exciting and suggest that arbaclofen may help some children with autism,” said Vanderbilt University child psychiatrist Jeremy Veenstra- VanderWeele, M.D. “We hope that future studies will clarify who is most likely to benefit and what symptoms are most likely to improve.”

Dr. Veenstra-VanderWeele presented the preliminary findings today at the International Meeting for Autism Research, in San Sebastian, Spain. Co-investigators included scientists from Seaside Therapeutics in Massachusetts. The biotech company holds the rights to develop arbaclofen, also known as compound STX209.

The 12-week study enrolled 150 participants, ages 5 to 21, at two dozen sites across the United States. Half received arbaclofen. The other half received a dummy pill, or placebo. The study was “blinded,” meaning no one knew who received the real treatment until after the results were tallied.

Throughout the study, parents filled out questionnaires and physician’s conducted assessments to measure changes in behavior. The parent-rated measures showed similar improvements in both groups (arbaclofen or placebo). By contrast, the physician assessments showed significantly greater improvements in overall symptoms among those who received arbaclofen. The researchers also saw evidence that participants with relatively higher IQs may have benefitted the most from the treatment.

The study also tracked side effects. Ten participants – eight on arbaclofen and two on placebo – withdrew from the study because of adverse effects. These related mostly to problem behaviors such as aggression or sleep disturbance. The medicine’s most common side effect was drowsiness.

“If these promising results can be replicated, arbaclofen may be the first drug that can improve sociability in individuals with autism,” commented Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “This would be a historical leap forward and open the door for more research on drugs that address core symptoms.”

For more news and blogs from IMFAR, click here.

Speech Devices Can Help Build Language in Schoolchildren with Autism

Jessica Sachs — Wed, 01 May 2013 09:00:01 PDT

Minimally verbal schoolchildren with autism gained spoken language faster when play-based therapy included speech-generating devices

Minimally verbal schoolchildren with autism gained spoken language faster when play-based therapy included speech-generating device

May 01, 2013

Despite intensive early therapy, around a third of children with autism speak few words when they enter school. Once experts believed that if children with autism didn’t acquire language by age 5 or 6, they never would. Now we know that many can do so. Encouraged, researchers, parents and other advocates are keenly interested in finding better ways to speed and boost these delayed gains in spoken language.

At this year’s International Meeting for Autism Research (IMFAR), educational psychologist Connie Kasari, Ph.D., described the promising results of a study that incorporated speech-generating devices into a language and play-based autism therapy.

Dr. Kasari’s research team included investigators at University of California, Los Angeles; Vanderbilt University, Nashville; and the Kennedy Krieger Institute, Baltimore. It was supported by a research grant from Autism Speaks

Sixty children with autism spectrum disorder (ASD) participated in the study. They ranged in age from 5 to 8 years and used fewer than 20 words at the start of therapy. The researchers measured their word use before, midway-through and after the six-month study.

All the children participated in a play-based intervention that encouraged engagement with the therapist and the use of spoken language. To start, they received two, hour-long sessions per week.

To measure the additional benefit of a speech-generating device, the researchers used it with half the children from the very start of therapy. (Speech-generating devices come in many forms, including iPads with special apps.)

At the 3 month mark, the researchers measured the children’s progress. Those who were gaining language skills continued on course. The researchers added the communication device to the therapy of children who were responding slowly without it. Those who were progressing slowly even with the device received an extra hour of therapy per week.

All participants gained words; but progress faster with device
At the end of the six months, all the children in the study had made gains in language and communication. They used words more often and engaged in more communication with a social partner. On average, they took four or more conversational turns with a partner.

However, the children who began the treatment with the speech device made earlier and more rapid progress.

“These findings suggest that children who are minimally verbal can make significant progress in spoken social communication after age five,” says Dr. Kasari. “Clearly they are benefitting from the addition of a speech-generating device into therapy sessions right from the start

Insights for parents and therapists
“Many children with autism use augmentative communication devices,” adds Lauren Elder, Ph.D., Autism Speaks assistant director of dissemination science. “This study shows that these devices can help children with autism develop spoken language, which is often the most pressing concern for parents.” The study also adds to recent research suggesting that many nonverbal children with autism can and do develop spoken language, Dr. Elder adds. “It also gives therapists an evidence-based treatment technique they can use to help these children.”

For more IMFAR 2013 coverage, click here. To read more about Dr. Kasari’s Autism Speaks-funded research projects, click here.

High-Quality Early Intervention for Autism More Than Pays for Itself

Jessica Sachs — Wed, 01 May 2013 06:00:00 PDT

Early Start Denver Model program for toddlers produces cost savings by reducing subsequent need for therapy and support services

May 01, 2013

Last year, University of Pennsylvania health-policy researcher David Mandell, Sc.D., reported that autism’s costs the nation around $137 billion per year. Now Dr. Mandell has calculated the cost-savings produced by a high-quality and intensive early behavioral intervention program.

The analysis focused on the Early Start Denver Model (ESDM). ESDM uses techniques from Applied Behavioral Analysis (ABA) for early intervention with toddlers. It emphasizes relationship-building and interactive play. Previous studies have found that ESDM significantly boosts IQ and social-communication skills and improves underlying brain responses to social cues.

“While early intensive behavioral intervention costs more to deliver in the early years, it more than pays for itself in terms of reduced needs for therapy and educational support by the time a child reaches high school,” Dr. Mandell said.

Dr. Mandell reported his preliminary results today at a meeting of Autism Speaks Toddler Treatment Network, being held in conjunction with the International Meeting for Autism Research (IMFAR), in San Sebastian, Spain.

His cost-benefit analysis was supported by a research grant from Autism Speaks.

Dr. Mandell and his research team tracked the autism-related services used by 39 children who had participated in a two-year ESDM study led by Jeff Munson, Ph.D., and Annette Estes, Ph.D., at the University of Washington. At the time, the children were 18 to 30 months old. Twenty-one received two years of ESDM. For comparison, 18 children received a comparable amount of services through the early intervention programs in their community (Seattle). After the trial ended, parents were referred to their community’s early intervention and special education programs for further services. The researchers tracked their use of these services over the following four years.

Higher up-front costs
During the two years of the ESDM study, autism-related services totaled $9,619 per child per month for those receiving ESDM therapy. Of this, the cost of ESDM was $5,560 per month. (As the children were part of a research study, the families did not bear this cost.) By comparison, the cost of services received by the children in the outside community averaged $2,458 each per month.

The trend toward cost benefits emerged in the four years after the study concluded. During this period, the children in the ESDM group received an average of 158 hours of autism-related services per child per month. By contrast, the children in the comparison group received an average of 257 hours of services each per month. Such services included special education supports as well as speech, physical and occupational therapies. Overall, the children who had received ESDM also spent significantly more time in regular education classrooms, as opposed to special education, than did the other children.

The economic payoff
The cost breakdown for the four follow-up years averaged $3,569 per child per month for the ESDM group. By contrast, it averaged $5,033 per month for those in the comparison group. Projecting out from this trend, Dr. Mandell estimated that ESDM would more than pay for itself before the children reached high school – on average, after about 8 years.

“We used a very narrow definition of cost for this study,” he added. “We included only autism-specific services such as physical, occupational and speech therapies as well as ABA. I believe the cost efficiencies would become even more pronounced with an evaluation of health costs and overall family economics such as the ability of both parents to continue to work and earn income while their child received services.”

The Early Start Denver model was developed by psychologists Sally Rogers, Ph.D., and Geri Dawson, Ph.D., in the 1990s. Dr. Dawson is now chief science officer of Autism Speaks.

“It’s very promising to see that children who received two years of early intensive intervention required fewer hours of therapy and special education services through the remainder of their preschool years,” Dr. Dawson said. “Not only do the young children who receive early intensive intervention benefit in the short term, we see that through their remaining preschool years these children require fewer special education supports.”

For more coverage of this year’s IMFAR presentations, click here.

Autism Speaks at the International Meeting for Autism Research (IMFAR)

Jessica Sachs — Wed, 01 May 2013 02:05:04 PDT

Public invited to live streaming of IMFAR press conference; daily news reports and blogs

Public invited to register for live streaming of IMFAR press conference; daily news reports and blogs on Autism Speaks website

May 01, 2013

Autism Speaks is pleased to be a continuing sponsor of the International Meeting for Autism Research (IMFAR). This year’s annual meeting is being held in San Sebastian, Spain, May 2 – 4.

Register to view on-demand video of press conference:
At a pre-meeting press conference, seven autism researchers described new findings of particular interest to both the scientific community and the public. Both the media and the public are invited to register to view an on-demand webcast of the press conference, which took place at noon EDT on May 1. If you are not a member of the media, please write “autism community” in the space for designated company. Register for access here.

In 2001, the co-founders of Cure Autism Now and the National Alliance for Autism Research sponsored the first IMFAR. Both organizations merged with Autism Speaks to create the world’s leading autism research and advocacy organization.

Stay tuned to Autism Speaks science news and blogs for daily IMFAR coverage.

IMFAR Press Conference Photos from Wednesday, May 1st, 2013 ...

Previous Slide 1/11 Next Autism Speaks Vice President for Communications and Awareness Dana Marnane opened the press conference. INSAR President Helen Tager Flusberg. IMFAR Meeting Chair Joaquin Fuentes welcomed attendees to Spain. The panelists described noteworthy results from trials that spanned the fields of autism genetics that spanned many field of autism research – from genetics to treatment. Ami Klin of Emory Universty Marcus Autism Center. Kevin Pelphrey of the Yale Child Study Center described insights from noninvasive brain scans before during and after Pivotal Response Therapy. Wendy Goldberg of the University of California Irvine described a study revealing positive attitudes among college students toward fellow students with autism. Connie Kasari described research results suggesting that speech generating devices can speed gains in spoken language in school children with autism and limited verbal skills. Ronnie the Robot joined Notre Dame research Jason Diehl to illustrate a study suggesting that technology can help individuals with autism better socialize with humans. Live web streaming allowed reporters investigators and other members of the autism community to join those at the press conference. News stories on the press conference's presentations and more will appear on the Autism Speaks website during the IMFAR conference.

NYC Korean Community Autism Project

Jessica Sachs — Wed, 24 Apr 2013 04:00:29 PDT

Parents, professionals and community leaders meet to describe progress in advancing autism awareness, screening and early intervention

April 24, 2013

Yesterday, the New York City Korean Community Autism Project announced the release of new materials to improve early autism screening and care in New York City’s Korean-speaking community. The project is among the first to adapt, translate and evaluate materials for improving early diagnosis and intervention for autism in an ethnic minority American community.

Autism Speaks and its funded researchers developed the materials with the guidance of the project’s Community Advisory Board. The work included extensive interviews and focus groups with parents, service providers and other concerned community members. It built on existing English-language materials developed by Autism Speaks and the Centers for Disease Control and Prevention (CDC). The latter included information from the CDC’s “Learn the Signs. Act Early” campaign.

At last night’s event, project leaders presented flyers and other information developed to help the community’s parents and healthcare providers recognize the early warning signs of autism. These materials will be distributed through local daycare centers, schools and primary care offices. They are also available on the Autism Speaks website, here.

The community’s input also guided the Korean-American translation and adaptation of Autism Speaks popular 100 Days Kit. This tool kit helps families make the best use of the first three months following their child’s diagnosis. (Download the Korean version here.)

"This project is exciting news in the Korean-American autism community,” said Community Advisory Board member Sunghee Byun. “When my son was diagnosed with autism, the hardest thing was not his diagnosis. The hardest thing was a lack of awareness on autism and the importance of the early intervention in the community. I did not know where to turn for guidance. This project will be another stepping stone for the families and children affected by autism in the Korean-American community."

Closing the gap in autism diagnosis and care
Research suggests that delayed diagnosis and intervention is common in minority communities. Barriers can include language, lack of culturally appropriate care and inadequate health insurance and healthcare facilities.

“Research on Asian families in general, especially among those where English is not spoken at home, suggests delayed diagnosis and under-diagnosis of autism,” said health services researcher David Mandell, Sc.D., the project’s principle investigator. “Often this is because pediatricians attribute developmental delays to children having English has a second language.” Dr. Mandell is an associate professor at the University of Pennsylvania’s Perelman School of Medicine.

“It is increasingly clear that early diagnosis and intervention can make a tremendous difference in quality of life for children with autism and their families,” added Andy Shih, Ph.D., senior vice president of scientific affairs for Autism Speaks. “We want to spread knowledge of this in the Korean community. Early intervention has proven effective in improving IQ, language ability and social interaction. The earlier, the better.”

The knowledge gained through this project holds promise for helping other underserved populations, Dr. Shih added. “With dramatic increases in autism across diverse populations, we need reliable methods to not only translate texts into foreign languages but to make these texts meaningful in different cultures,” he explained. Reducing disparities in autism care is the overarching goal of Autism Speaks Early Access to Care initiative.

For more information about the New York City Korea Community Autism Project in Korean, click here. For English, click here. For more information on Autism Speaks Early Access to Care initiative, click here.

Further Evidence that Valproate during Pregnancy Increases Autism Risk

Jessica Sachs — Tue, 23 Apr 2013 13:01:01 PDT

Large study links autism and prenatal use of anti-epileptic drug; alternative medicines possible for some but not all women

April 23, 2013

Large study links autism and prenatal use of anti-epileptic drug; alternative medicines possible for some but not all women

For over a decade, studies have suggested a link between autism and the use of the anti-epileptic drug valproate during pregnancy. Today, the Journal of the American Medical Association (JAMA) published the results of the largest-ever study to address this concern.

The researchers studied the national health registry records of all Danish children born between 1996 and 2006. Out of a total of 655,615 children, 508 were born to mothers taking valproate during pregnancy.

The study found that prenatal exposure to valproate nearly tripled the risk of autism spectrum disorder (ASD). ASD prevalence was 4.4 percent (just under 1 in 20) among the children whose mothers took valproate during pregnancy. This compared to 1.5 percent (1 in 66) across all the children in the study. The researchers emphasized this increased risk remained relatively low – still under 5 percent. They saw a less-pronounced increase in autism risk among children whose mothers had used valproate but stopped before pregnancy.

Of additional interest, the prenatal valproate exposure appeared to change the ratio of boys to girls affected by autism. In the general population, autism affects four times as many boys as girls. Among those exposed to valproate in this study, autism affected just twice many boys as girls. Further research is needed to understand this effect.

The study did not find increased autism risk with other anti-epilepsy therapies. However, these alternatives don’t work for all patients. As such, the researchers emphasized that the increased risk of autism must be balanced against the benefits to women who need valproate to control their epilepsy.

Jakob Christensen, Ph.D., of Denmark’s Aarhus University Hospital led the study. The analysis controlled for factors that might skew outcomes. These included parental age and psychiatric history, prematurity, birth weight and birth defects.

JAMA published a related editorial by neurologist Kimford Meador, M.D., and neuropsychologist David Loring, Ph.D., of Emory University, in Atlanta. They noted that prenatal use of valproate has also been linked to birth defects and mental impairments. As such, they urged doctors to discuss valproate’s risks and benefits with their patients and consider alternative medicines. If no effective alternatives can be found, they recommend using the lowest effective dose of valproate.

“As the largest study to date identifying valproate as a risk factor for ASD, this research contributes to our understanding of environmental risk factors associated with autism,” adds Alycia Halladay, Ph.D., Autism Speaks senior director of environmental and clinical research. “Further research is needed. If scientists can identify the mechanism by which valproate affects risk, then prevention measures may be taken.”

The Epilepsy Foundation has more information on pregnancy and epilepsy medications here.

Beyond Autism Genes: Epigenetic Differences in Identical Twins

Jessica Sachs — Tue, 23 Apr 2013 03:41:35 PDT

By studying identical twins who differ in autism traits, researchers find evidence of environmental influences on gene expression

April 23, 2013

Researchers studying identical twins who differ in autism traits have identified what may be a major mechanism by which environmental influences contribute to – or protect against – autism. They did so by documenting tell-tale patterns in a biological system that controls gene activity without altering the genes themselves.

The report appears online today in Molecular Psychiatry. It was supported by a research grant from Autism Speaks.

This research represents the first large study to directly examine the role of epigenetics in the development of autism, says senior author Jonathan Mill, Ph.D., of King’s College London and the University of Exeter. Epigenetics refers to biological systems that control the expression, or activity, of genes without changing their underlying DNA code. It is a relatively new but rapidly advancing field of research.

Specifically, the researchers looked at DNA methylation, a mechanism that keeps genes locked in the off position. Using advanced technology, they compared areas of DNA methylation across the genomes (entire DNA sequence) of 100 identical twins (50 pairs). In some cases, both twins had autism. In others, just one or neither was affected.

“We identified distinctive patterns of DNA methylation associated with autism diagnosis, related behavior traits and increasing severity of symptoms,” says lead author Chloe Wong, Ph.D., also of King’s College London.

The researchers also note that some of the distinctive differences appeared in regions of the genome associated with early brain development.

Beyond Autism Genetics

Over the last 20 years, research has shown that autism stems, in large part, from DNA changes, or mutations, in genes involved in brain development. Much of this evidence comes from studying twins – especially identical twins, who share the same genome – or complete set of genes. When one identical twin has autism, so does the other around 70 percent of the time.

“That nearly a third of identical twins differ in autism symptoms makes clear that there are also nongenetic influences at play in some cases,” Dr. Wong comments. Though they share the same womb, identical twins can experience different stresses during pregnancy and birth, she notes. Along these lines, studies have associated increased autism risk with certain birth complications. Exposure to certain chemicals during pregnancy or early infancy may also affect autism risk.

Still, the question remained, how do such nongenetic influences influence the development of autism? In recent years, research has suggested that they may do so through epigenetics. That is, by affecting the systems that turn genes on and off at the proper time and place. (More on environmental epigenetics and autism here.)

Outside of the field of autism, a number of studies have shown that influences such as prenatal stress and exposure to certain pollutants produce epigenetic changes that can interfere with normal gene function.

A Landmark Study

“This is the first study to take a whole genome approach to studying epigenetic influences in twins who are genetically identical but have different symptoms,” comments Alycia Halladay, Ph.D., Autism Speaks senior director of environmental and clinical sciences. “These findings open the door to future discoveries in the role of epigenetics – in addition to genetics – in the development of autism symptoms.”

The study was the largest-ever of its kind. However, larger studies enrolling more individuals are needed to confirm the findings and explore their implications.

Research into the intersection between genetic and environmental influences is crucial, Dr. Mill concludes. “Sometimes risky environmental conditions can be avoided or even changed,” he notes. Potentially, advances in understanding autism epigenetics might also advance the development of tailored treatments.

In addition to funding by Autism Speaks, the study received support from the UK Medical Research Council. The twins were from the Twins Early Development Study, which is funded by the Medical Research Council and the US National Institutes of Health.

Kids and Teens with Autism Vulnerable to Video Game Addiction

Jessica Sachs — Fri, 19 Apr 2013 08:04:14 PDT

Experts call for caution and further research; see potential for careful use of video games to teach social-communication skills

April 19, 2013

Parents and autism therapists have long noticed that many children and teens with autism become deeply engaged with video games and other forms of screen-based media. Indeed, many therapists and “app” makers design autism-friendly video games around this tendency.

Two new studies suggest that caution may be warranted.

"We found that children with ASD spent much more time playing video games than typically developing children, and they are much more likely to develop problematic or addictive patterns of video game play," says University of Missouri psychologist Micah Mazurek, Ph.D.

The lead author of both studies, Dr. Mazurek is a co-investigator at the university’s Thompson Center, one of 17 sites in Autism Speaks Autism Treatment Network.

In one study, Dr. Mazurek looked at time spent on TV, video games and social media in children ages 8 to 18. She compared the habits of 202 participants with autism spectrum disorder (ASD) to those of 170 typically developing siblings. Those with ASD spent over 60 percent more time playing video games and watching TV than all non-screen activities combined. Boys with autism spent an average of 2.4 hours a day playing video games. Girls with autism spent an average of 1.8 hours. By contrast, their typically developing brothers spent 1.6 hours playing video games; the sisters, less than an hour. The children with autism spent relatively little time using social media.

Participants also completed the "Problem Video Game Playing Test," which assesses behavioral addiction to video games. Compared to their typically developing siblings, the children and teens with autism had higher levels of problematic, or addictive, video game use. Related behaviors include getting angry when interrupted from games, having trouble stopping game play when necessary and generally spending more time with games than with friends and family.

“Parents need to be aware that, although video games are especially reinforcing for children with ASD, children with ASD may have problems disengaging from these games," Dr. Mazurek says.

In another study, Dr. Mazurek tracked the behavior of 169 boys with ASD. She found an association between excessive video game use and increased oppositional behaviors. Such behaviors include arguing, refusing to follow directions and aggression. However, an association does not prove that one causes the other, Dr. Mazurek cautions. She plans to pursue further study to clarify her findings.

On the positive side, video games show promise for helping individuals with ASD overcome social and communication challenges. “Using screen-based technologies, communication and social skills could be taught and reinforced right away," Dr. Mazurek says. "However, more research is needed to determine whether the skills children with ASD might learn in virtual reality environments would translate into actual social interactions."

“Video games can be useful for teaching social skills and other behaviors,” agrees Autism Speaks Senior Vice President for Scientific Affairs, Andy Shih, Ph.D. “But we need to be sure that technology use is balanced with experience in the real world.”

See-Through Brain Tissue Promises to Advance Autism Research

Jessica Sachs — Mon, 15 Apr 2013 12:31:50 PDT

A donation to Autism Speaks Autism Tissue Program played a key role in a stunning advancement in research on brain development and auti

April 15, 2013

Donation to Autism Speaks Autism Tissue Program involved in visually stunning advancement in brain research

In a dramatic breakthrough, researchers have developed a method for rendering brain tissue transparent. They then used fluorescent chemicals to highlight three-dimensional networks of brain cells and fibers to study their connections.

“This feat of chemical engineering promises to transform the way we study the brain’s anatomy and how disease changes it,” said Tom Insel, M.D., director of the National Institute of Mental Health.

Thanks to post-mortem donations, Autism Speaks Autism Tissue Program was able to provide the Stanford University researchers with the brain tissue of an individual affected by autism. Using it, they traced the paths of individual nerve cells and their connections.

In addition, the Stanford University research team rendered an entire mouse brain transparent. By highlighting its nerve connections, they created a three-dimensional “tour” of an intact brain. (Watch embedded video above.)

Next the researchers hope to accomplish the same feat with an intact human brain. They call their technique CLARITY, for “Clear Lipid-exchanged Anatomically Rigid Imaging/immunostaining-compatible Tissue Hydrogel.” In essence, it replaces the brain’s light-blocking fat with a transparent hydrogel.

“CLARITY has the potential to unmask fine details of brains from people with brain disorders without losing larger-scale circuit perspective,” said National Institute of Health Director Francis Collins, M.D., Ph.D.

The researchers also demonstrated that immunological and genetic tests can be performed repeatedly on the same stained brain tissue. This is crucial for autism and other brain research that depends on scarce postmortem donations.

“The history of neuroscience discovery has been paved, in large part, by innovations in the preparation of brain tissue for research,” said Rob Ring, Ph.D., Autism Speaks vice president of translational research. “However, the ability of CLARITY, and innovations like it, to create new knowledge on the origins of disease will remain dependent on the availability of quality brain tissue from affected individuals.” Dr. Ring oversees Autism Speaks ATP program.

To learn more about Autism Speaks Autism Tissue Program, click here. Also see “Sina’s Last Gift” and “NPR Spotlights Crucial Role of Autism Speaks Autism Tissue Program.”

Autism Journal Podcast on Adult Outcomes

Jessica Sachs — Fri, 12 Apr 2013 11:39:17 PDT

Podcast features Autism Speaks-funded researcher studying how to promote employment and independence in adults with autism

April 15, 2013

Autism: The International Journal of Research and Practice invites Autism Speaks families, researchers and supporters to hear its latest podcast: “Outcomes in adults with autism spectrum disorders: a historical perspective.”

The podcast features Julie Lounds Taylor, Ph.D., a special-education researcher at the Vanderbilt Kennedy Center, one of 17 Autism Speaks Autism Treatment Network (ATN) centers. Dr. Taylor is pursuing Autism Speaks-funded research on the factors that promote employment and independence in adults with autism. (Read about her study here.)

In the podcast, Dr. Taylor discusses historical changes in how researchers and society have defined and supported successful outcomes for adults with autism spectrum disorder (ASD). The review article she co-authored is available for free download here.

Children’s Hospital of Philadelphia psychologist Michele Villalobos, Ph.D., hosts the journal’s Autism Matters podcast series. It aims to engage a broad audience, from researchers and clinicians to individuals and families affected by autism. The Children’s Hospital of Philadelphia is likewise a member of Autism Speaks ATN.

For Autism Speaks resources for adults, click here. For more autism research news, click here.

IACC Selects Top 2012 Advances in Autism Research

Jessica Sachs — Wed, 10 Apr 2013 06:56:26 PDT

On the occasion of Autism Awareness Month, the Interagency Autism Coordinating Committee announces 20 most-significant studies of 2012

April 10, 2013

On the occasion of Autism Awareness Month, the Interagency Autism Coordinating Committee announces 20 most-significant studies of 2012

The Interagency Autism Coordinating Committee (IACC) has published its selection of the 20 most significant autism research studies of last year. The committee summarizes the importance of each study’s findings in 2012 IACC Summary of Advances in Autism Spectrum Disorder Research. (Download a free copy here.)

“The IACC, along with the rest of the nation, recognizes the urgent needs of the autism community and presses on toward the goal of transformative scientific discoveries and enhanced services and supports that will make a difference in the lives of individuals and families living with ASD,” said IACC Chair Thomas Insel, M.D. Dr. Insel also directs the National Institute of Mental Health. The 20 studies represent only a small fraction of the year’s scientific advances in understanding and treating autism, he added.

”It is exciting to see the diversity of new discoveries that were made in the past year, especially the greater emphasis on autism treatments and adult services research, which have been relatively neglected areas in the past,” said IACC member and Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D.

In the area of autism risk, the IACC highlighted a study from Denmark suggesting that influenza and fever during pregnancy may increase the risk of ASD. The finding emphasizes the importance of flu shots among women of child-bearing age.

The IACC also selected several papers that examine the role of de novo genetic mutations. These mutations arise spontaneously in parents’ reproductive cells. (See “Hundreds of Tiny Mutations Linked to Autism” in Autism Speaks Top Ten 2012 report.)

In studies on interventions, the IACC highlighted the finding that 12 to 48 month-old children who completed the Early Start Denver Model program showed improvements in brain activity in response to social images such as faces. (See “Early Intervention Program Alters Brain Activity.”)

The committee also called attention to progress in understanding factors that affect health and safety. These included a study on wandering behavior in children with autism. (See “Study Confirms: Wandering Common and Scary.”)

In addition, the report highlights several studies drawing attention to areas of urgent need. These include the paucity of services to help teenagers and young adults transition to independent living, employment and higher education. (See “Mounting Evidence of Critical Need for Adult Transition Support.”)

For more information on the report and the IACC, visit www.iacc.hhs.gov.

Discovering Comprehensive Care; Advancing Autism Research

Rachel Nuwer — Mon, 08 Apr 2013 02:47:53 PDT

A family finds a medical home in Autism Speaks Autism Treatment Network and gladly "gives back" to autism research

April 08, 2013

A family finds a medical home in Autism Speaks Autism Treatment Network and gladly "gives back" to autism research by becoming part of the network's patient registry.

By Rachel Nuwer

Until Gianna Ferrari was 2½, her parents, Bernie and Jillian, didn’t notice that their little girl wasn’t behaving like other toddlers her age. Because Gianna had kidney and urinary tract problems, the Ferraris, who live on Staten Island, stayed focused on her medical issues. Then Gianna’s baby brother, Anthony, came along.

By the time Anthony was 6 months old, the differences between the two siblings became glaringly obvious. Anthony clearly responded when his parents talked to him. Gianna still didn’t. Anthony was playing with his baby toys. Instead of playing with toys, Gianna obsessively lined up DVDs. She would stare into space for minutes at a time, as if she saw something no one else could.

As a teacher, Jillian had taught a first grader with Asperger syndrome, a high-functioning form of autism. She saw similarities in her daughter’s behaviors. A psychologist sent by their local school district diagnosed Gianna as having pervasive developmental disorder not otherwise specified (PDD-NOS), another subtype of autism. But the exam seemed rushed, and the Ferraris had their doubts.

Care and Research: Autism Speaks ATN
They took Gianna to the Developmental Neuropsychiatry Program at Columbia University Medical Center. The center is part of Autism Speaks Autism Treatment Network (ATN).

There, specialists assessed Gianna with behavioral evaluations, as well as physiological and genetic tests. They confirmed that Gianna had autism and helped enroll her in a comprehensive program of care.

In the months that followed, Gianna began behavioral therapy five times a week at home. She also received speech therapy and enrolled in a preschool that provided additional early-intervention services. Jillian quit her teaching job to work with Gianna at home and coordinate her therapy appointments.

Then, as Gianna neared her fifth birthday, one of her therapists noticed her tendency to stare into space. She raised the possibility that Gianna might be having epileptic seizures.

At Columbia’s ATN center, pediatric neurologist Reet Sidhu, M.D., conducted an overnight electroencephalography (EEG). The noninvasive test employs a head cap studded with electrodes to measure and record brain activity.

The EEG showed that Gianna had “epileptiform discharges” — abnormal brain activity similar to that seen in epilepsy. Epileptiform discharges can predispose people to seizures but don’t mean they’re inevitable, Dr. Sidhu told the Ferraris. Gianna’s staring wasn’t due to seizures, but her EEG was clearly abnormal.

“We know that children with autism spectrum disorders have a higher risk of epilepsy,” Dr. Sidhu explains. “But what is not entirely clear is the relationship of abnormal epileptiform discharges to behavior or how we can best help children who have abnormal EEGs but don’t have true epileptic seizures.”

The Autism-Epilepsy Connection
An estimated 10 to 30 percent of individuals with autism have epilepsy with obvious seizures. As many as 60 percent have epileptiform discharges that show up only on an EEG.

Dr. Sidhu’s research focuses on studying the relationship between this pattern of abnormal brain activity and behavior. Specifically, she and her colleagues seek clearer understanding of whether and how these discharges contribute to autism symptoms and related behavioral problems in areas such as attention and mood.

“It’s a tricky area because we don’t know if these are the cause of autistic behaviors or just a symptom of underlying brain dysfunction,” Dr. Sidhu says. “It’s a chicken or egg situation.”

“In the past, we would never have considered prescribing anticonvulsant medication unless someone actually had seizures,” she adds. “But we’re re-thinking this notion. The answers aren’t clear cut. But what an exciting thought to potentially have a treatment for some of the problem behaviors that prove so challenging for these children.”

In 2011, Dr. Sidhu began collaborating with neurologists at other Autism Speaks ATN sites to study the effects of abnormal EEG activity such as Gianna’s. The research is being funded by the U.S. Human Resources and Services Administration (HRSA) through Autism Speaks Autism Intervention Research Network on Physical Health (AIR-P).

For the multi-site study, the researchers recruited 60 children with autism, ages 3 to 7, none of whom have epilepsy. The team is looking at how EEG abnormalities relate to daytime behaviors such as inattention and aggression. If they find such associations, the next step will be to explore potential treatments.

“This partnership between Autism Speaks and HRSA has provided critical funding to investigate key areas of medical concern, including epilepsy, among parents of children with ASD,” says Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D. “Given the high rates of epilepsy among children and adolescents with autism, it’s imperative that we can quickly translate the results of well-designed studies into safe and effective treatments and interventions for these individuals.”

Family Ties to Autism
Dr. Sidhu’s interest in autism and epilepsy began within her own family. Her younger brother, now 37, has had lifelong developmental and learning disabilities. As a child and young adult, he struggled socially. He has also suffered from seizures since he was a baby. Doctors offered up labels such as “minimal brain dysfunction” and “learning disabilities,” but never gave him a specific diagnosis.

“Being an older sister, this touched my life tremendously,” says Dr. Sidhu. “I was always trying to figure out what was wrong with my brother because none of those labels seemed to capture the problem. My brother is the reason I became a pediatric neurologist.”

While pursuing her medical degree, she reviewed case studies of children and adults affected by autism, with symptoms that mirrored her brother’s. She trained in pediatric neurology and began seeing high-functioning patients with autism. It was then that Dr. Sidhu realized her brother, too, was on the spectrum. She gave him the formal diagnosis that had eluded his childhood doctors.

“That label gave him an answer for why he had struggled socially throughout his life,” Dr. Sidhu says. “He’s comforted to know he’s not alone.” A mechanical whiz who spends much of his free time disassembling and reassembling computers, he set about creating a website called the Chicago Autism Society. He has even helped with research – enrolling in a brain imaging study at Columbia University.

A Career Takes Shape
Helping her brother better understand his abilities and disabilities further shaped Dr. Sidhu’s interest in autism and the combination of research and patient care embodied by Autism Speaks ATN. “I knew that I wanted to do autism work and that it would be my lifelong commitment,” she says. “Being part of the ATN means I can tap into an engaged and versatile community of researchers and families.”

Today Dr. Sidhu co-chairs the ATN’s Neurology, Genetics and Metabolics Committee. It brings together experts in pediatric neurology, genetics, metabolism, sleep and developmental pediatrics. All the members are both doctors and researchers committed to collaborating on studies that cut across their related fields. Together, we are creating evidence-based guidelines to provide a standard of care in the neurological workup of autism spectrum disorders, Dr. Sidhu says. “Our goal is simple: to improve the clinical care of our children with autism.”

Through Autism Speaks ATN, Dr. Sidhu also participates in international efforts to better understand the connection between autism and epilepsy, while directly helping families grappling with this and related neurological issues.

With the Ferraris, Dr. Sidhu recommended against putting Gianna on seizure medication at this time, since she wasn’t having true epileptic seizures and the drugs have side effects.

Instead she suggested that Gianna continue to receive autism intervention services for her behavioral issues, while returning for follow-up neurological exams two or three times per year. At these exams, Dr. Sidhu observes Gianna while she plays, asks her to run in the hallway, checks her reflexes, examines her eyes and measures her head. Gianna’s mother signs a waiver allowing Dr. Sidhu to use the test results in her research.

“If they can be helpful for someone else, that’s great,” says Jillian, who looks forward to the day when researchers can provide more answers – and treatments – for the neurological problems so often associated with autism. Meanwhile, she actively maintains a Facebook page – Jillian’s Special Needs Family – which she loads with resources, advice and encouragement for families going through similar experiences.

Gianna’s Progress
With the support of her family, classmates and therapists, Gianna’s social life is progressing. Now seven years old, she takes dance lessons and participates in Girl Scouts. She attends classes at a special education school during the week and enjoys several one-on-one sessions with therapists after school. She is learning to read and can count coins and tell time.

On Saturdays Gianna attends Kids Connection USA, on Staten Island. The program brings kids on the autistic spectrum together with typically developing peers to simply have fun and socialize. Gianna particularly enjoys arts and crafts and playing board games with her new friends.

Gianna still has tantrums almost daily. She also lacks awareness of everyday dangers, and so requires supervision. But these challenges used to be far worse, says her mom, who credits Gianna’s behavioral therapy and anti-anxiety medication. “She’s better able to communicate her needs now, which helps us eliminate the tantrums.”

At the same time, her parents report that each visit from the behavioral therapist brings noticeable improvements. Dr. Sidhu and her staff have noticed the improvements as well. The first time Gianna visited their office, she hardly spoke. In follow-up trips, she screamed, “I want to go!” over and over again in the waiting room and would endlessly repeat the phrase “How are you, Dr. Sidhu?” in the exam room.

A year and a half later, she’s speaking politely, cooperating with her doctors and engaging less in repetitive behaviors during her visits.

“Her anxiety has clearly improved over time with the help of behavioral interventions,” Dr. Sidhu says. “The Ferraris embody such great attributes of a family dealing with a child with a disability because they are so dedicated, so willing to do everything for Gianna, and they handle all adversities with such grace,” Dr. Sidhu continues. “They make it seem almost effortless in some ways. I’m fortunate to be part of the care team for Jillian and her family.”

Autism Speaks Autism Treatment Network
Autism Speaks Autism Treatment Network (ATN) is the first and largest North American consortium of medical centers dedicated to improving medical treatment for individuals with autism spectrum disorder. Autism Speaks established the ATN to provide families with state-of-the-art, multidisciplinary care for children and adolescents with autism and its associated conditions. Through a sizeable grant from the HRSA, Autism Speaks Autism Treatment Network also serves as the nation’s Autism Intervention Network on Physical Health (AIR-P), dedicated to research that advances autism medical practice nationwide. To find an ATN center near you, click here.

World Autism Awareness Day at the UN: Tackling Shared Global Challenges

Jessica Sachs — Wed, 03 Apr 2013 05:46:17 PDT

Autism Speaks co-hosts UN panel on social, economic and public health challenges faced by individuals, families and societies worldwide

April 03, 2013

Autism Speaks co-hosts UN panel on social, economic and public health challenges faced by individuals, families and societies worldwide

Ban Soon-taek, spouse of the UN Secretary-General Ban Ki-Moon, delivered a videotaped message to help open the World Autism Awareness Day panel discussion at the United Nations headquarters in New York City.

On the occasion of World Autism Awareness Day, Autism Speaks co-hosted a United Nations panel discussion “Addressing the Socioeconomic Needs of Individuals, Families and Societies Affected by Autism Spectrum Disorder and Other Developmental Disorders.”

The title of the day’s discussion came directly from a United Nations resolution passed unanimously by the General Assembly on December 12, 2012. Seventy nations co-sponsored the resolution, which calls on all member nations to develop programs to enhance access to autism services and advance opportunities for persons with autism to become active and valued members of their communities.

Ban Soon-taek, spouse of the UN Secretary-General Ban Ki-Moon, delivered a videotaped message (above). The Secretary-General addressed attendees in a message delivered by Shamshed Akhter, the UN assistant secretary-general for economic development.

“Now is the time for a more inclusive society,” he urged. “Let us continue to work hand-in-hand with persons with autism. Let us help them to cultivate their special strengths and meet their challenges, while enabling them to lead the productive lives that are their birthright.” The Secretary-General called on world leaders to seize the opportunity of an upcoming UN meeting on disability and development to make meaningful change in the lives of individuals and families affected by autism around the world.

Other opening speakers included Executive Director of the World Health Organization Jacob Kumaresan, Bangladesh Ambassador and Permanent Representative to the United Nations Abdul Momen, ambassadors from Qatar and Bahrain and a representative from the United States.

Self-Advocate Moderates Panel

Autism self-advocate Ari Ne’eman moderated the panel discussion. Ne’eman is the president and co-founder of the Autistic Self Advocacy Network. In 2010, President Obama appointed Ne’eman to the National Council on Disability.

Ne’eman called on the National Institutes of Health and private research foundations to commit a greater proportion of autism funding toward services research for adults with autism. He also called for greater inclusion of persons with ASD in the development of such programs.

“From our point of view, what we want are same things listed in the UN Convention on Persons with Disabilities,” he said. “That includes respectful awareness-raising that’s consistent with the desires of persons with disabilities.”

A Parent’s Perspective

Autism Speaks Board member, actress, author and autism advocate Holly Robinson Peete provided a parent’s perspective. “Even with considerable economic means, our family experienced challenges in getting our son RJ the necessary services,” she said. “I can only imagine how that challenge is amplified for families without financial means.”

Peete also spoke of the great need to combat stigma and increase access to care in underserved populations, including ethnic minority communities in North America. “Regardless of ethnicity, race, and socioeconomic status, all parents want the best for their children – to live a happy and healthy life where they are accepted by society and their full potential as an individual can be realized.”

Bangladesh Leads by Example

“Bangladesh can speak from firsthand experience that, even with limited resources, countries can make a difference in their autism communities,” said Saima Wazed Hossain, chairperson of the Bangladesh’s National Advisory Committee on Autism. Bangladesh’s efforts of the last two years have included autism training for community health workers, educators and early childhood caregivers. Bangladesh’s autism community has also engaged other advocacy and healthcare groups.

Autism Speaks Tackles Disparity

Panelist and Autism Speaks Chief Science Officer Geri Dawson, Ph.D., discussed efforts by Autism Speaks Global Autism Public Health Initiative (GAPH) to build capacity for autism services worldwide. GAPH helps nations build locally effective and culturally sensitive community programs under the guidance of parents, community workers and government representatives.

“The goal is equity instead of disparity in access to services for individuals across the lifespan and around the globe,” Dr. Dawson said. Both high- and low-income countries face many of the same challenges in raising awareness and delivering screening and services, she noted. “Only by working together, sharing experiences and expertise and making the best use of limited resources, can we make a difference,” she urged.

Cost-Benefits of Effective Intervention and Support

David Mandell, Sc.D., of the University of Pennsylvania, described his Autism Speaks-funded research on autism costs for individuals, families and societies. “The direct and indirect costs of autism rival or surpass those of many chronic diseases for which we have made prevention and treatment a major public health cause,” Dr. Mandell said. These costs include a dramatic loss in work productivity among parents of children with autism and the undeveloped potential of adults with autism.

Currently, the United States is making substantial financial investment in education services for young children with ASD. “But this hasn’t been paralleled by support for adults,” Dr. Mandell reported. In particular, programs are needed to help young adults with autism make the transition into higher-education, gainful employment and greater self-sufficiency.

While investments in early intervention are relatively high in the United States, Dr. Mandell cited studies showing that the early intervention services delivered in the community tend to fall short of what’s needed to significantly improve abilities and quality of life. “We urgently need cost-effectiveness studies to establish the economic value of high quality early intervention,” he concluded. With support from Autism Speaks, Dr. Mandell is pursuing such research. He is also studying the economic return on programs that help adolescents make the transition to a more independent and productive adulthood.

Autism Speaks Senior Vice President of Scientific Affairs Andy Shih, Ph.D., closed the day’s discussions with a special thanks to the UN representatives attending. “The resolution on autism that you unanimously adopted just four months ago in the UN General Assembly, reconfirms our global commitment,” he said. “We are grateful and proud that the resolution will play an integral part in the broader global disability movement.”

Hunting for Autism's Earliest Clues

Mon, 01 Apr 2013 00:13:06 PDT

By Ariel Bleicher

Researchers in North Carolina are developing the tools to screen for and treat autism as early as possible.

April 01, 2013

The brown-eyed boy in the video is 13 months old. He wears overalls and a blue-striped shirt and sits on his mother’s lap. On the table in front of them is a green washcloth. The boy picks it up and swings it near his ear as if he were guessing the contents of a Christmas present.

Across the table, a psychologist with the University of North Carolina-Chapel Hill takes notes.

“Have you noticed him swing a washcloth like that before?” the psychologist asks.

“He swings everything,” his mother replies.

“What else does he like to swing?”

“It used to be a pacifier or anything with a ring. He hangs it on his thumb and swings it back and forth."

“And he would swing it constantly?”

“Constantly.”

The psychologist offers toys, initiates games and makes exaggerated gestures and sounds, all while taking notes on the child’s responses – looking for signs of typical versus atypical development.

The video described above is playing out on the computer screen of UNC clinical psychologist Lauren Turner-Brown, Ph.D. Dr. Turner-Brown is part of the Early Development Project, which is testing how well a new early intervention program lessens the severity of symptoms in infants flagged at high risk for developing autism. The current phase of the research, funded by the Institute of Education Sciences, is led by Linda Watson, Ed.D., and Elizabeth Crais, Ph.D., and also includes developmental psychologist Grace Baranek, Ph.D., and Steve Reznick, Ph.D. All are team members in UNC’s Program for Early Autism Research, Leadership & Service (PEARLS).

“All kids do some funny things,” Dr. Turner-Brown says of the video. “So it’s not that this particular behavior is all that unusual. But you can see that it’s causing a problem for him developmentally because it’s interfering with his ability to do other things. He’s not babbling. He’s not listening. He’s not looking at his mom or sharing his experience with her."

In the video, the psychologist opens a board book and points to a picture on the page. The boy picks up the book and shakes it near his ear.

“It’s easy to notice things babies do that are unusual,” Dr. Turner-Brown says. “It’s harder to notice things that are missing."

“It’s easy to notice things babies do that are unusual,” Dr. Turner-Brown says. “It’s harder to notice things that are missing.”

Dr. Turner-Brown is particularly adept at noticing the absence of typical behaviors in babies who go on to develop autism or another developmental disorder. She is one of dozens of researchers at UNC and across the country who are trying to detect hints of autism in babies.

In the United States, the average age of diagnosis with an autism spectrum disorder (ASD) is around 4 years of age. For many years, doctors and scientists alike thought the disorder couldn’t be identified much earlier than age 3.

“Ten years ago, 2 years old was considered young for detecting kids at risk for autism,” says Dr. Baranek, who led the first phase of the Early Development Project, funded by Autism Speaks. This project was one of seven related studies funded by Autism Speaks in 2007 with the aim of gauging how early intervention with children 12 to 26 months of age can improve developmental outcomes. Together, this group of projects makes up the Toddler Treatment Network, which focuses on parent-mediated interventions that allow therapy to be continued in the home.

Research is continually overturning old assumptions about the age at which the warning signs of autism – both biological and behavioral – begin to emerge, says Autism Speaks Chief Science Officer, Geri Dawson, Ph.D. “The hope is to enroll these infants in early intervention programs that can dramatically improve their outcomes,” Dr. Dawson explains.

“Ten years ago, 2 years old was considered young for detecting kids at risk for autism,” Dr. Baranek says.

Currently, the American Academy of Pediatrics recommends screening all toddlers for autism at ages 18 and 24 months. Still, a growing number of researchers believe that screening can and should start even earlier for infants known to be at high risk for autism. These high risk infants include the younger siblings of children already diagnosed with ASD.

Dr. Baranek is among the pioneers of very early detection. In the late 1990s, she began collecting home videos of 9- to 18-month-old babies, some who later developed autism and others who didn’t. Previous studies had shown that parents of children with autism often began reporting concerns around or before the first birthday. Other studies of high-risk baby siblings, an area of research given special support by Autism Speaks, found that many of those who would later develop autism lacked typical social skills at 1 year of age. For example, many were not pointing at objects or mimicking their parents.

Dr. Baranek hoped to create a list of behavioral clues that would enable pediatricians and other healthcare providers to screen high risk infants reliably. She scoured the videos, noting hints of social interaction, repetitive actions and indications of unusual levels of irritability, clumsiness or sensitivity to sound or touch. These videos provided behavioral markers that might indicate which babies would develop autism and which would not.

“One of the things that was surprising for me was that I expected the signs would be more obvious than they were,” Dr. Baranek says. Still, on careful inspection the subtle clues were there, she says. Moreover, they weren’t restricted to just social development.

From her findings and those of others, Dr. Baranek and her PEARLS colleagues created a 61-item parent questionnaire that could be scored and used to flag young infants at risk for autism. They developed this First Year Inventory specifically for infants younger than 12 months. It includes such questions as:

* Does your baby turn to look at you when you call your baby’s name?

* Does your baby seem bothered by loud sounds?

* In new or strange situations, does your baby look at your face for comfort?

* Is your baby content to play alone for an hour or more at a time?

Drs. Baranek, Turner-Brown and their colleagues are preparing to publish a study that demonstrated the screening tool’s effectiveness with nearly 700 babies. It flagged 15 babies as “high risk.” Of those, 12 went on to be diagnosed with a developmental disorder, including five with an ASD. All 12 stood to benefit from early intervention therapies. On the downside, however, the screen failed to flag four babies who nonetheless developed an ASD.

In a follow-up study funded by Autism Speaks, the PEARLS researchers are refining the First Year Inventory and broadening its use for a wider age range of children. Meanwhile, they continue to use the current questionnaire to screen 1-year-olds in the local community, inviting “red flagged” families to participate in an ongoing study of early interventions.

So far in the current phase of the Early Development Project, the research team has recruited an additional 40 families and hopes to recruit at least 70 more. The families are randomly assigned to one of two groups. About half are referred to established community services such as speech and occupational therapy. The other half are enrolled in a new program called Adaptive Response Teaching (ART). It includes six months of weekly home visits from a trained therapist who works directly with the baby’s parents.

“We’re trying to get the parents to change the way they engage and play with their kids in order to target some of the areas where the kids are showing weakness,” Dr. Turner-Brown says. If a baby is not imitating sounds, for instance, the therapist will suggest ways for parents to help the baby develop this skill during the course of their daily routine (bathing, eating, reading, etc.).

It’s too early to ascertain how this intervention will change outcomes. But the results from the first phase of the Early Development Project – with 16 families – were encouraging. It allowed Dr. Baranek and her colleagues to refine their project and to prove its worth to the Institute of Education Sciences, which is funding the current larger study.

Despite the promise of infant intervention programs, a huge challenge remains: How does one determine how a baby would have fared without very early intervention? Indeed, if very early intervention can, in some cases, prevent autism, how does one determine whether a child would have developed autism without the intervention?

“How do we know for sure if we’re preventing autism or if a child was never going to develop it to begin with?” Dr. Baranek asks. To help address this conundrum, some researchers are looking for answers in the brain.

Across the street from Dr. Turner-Brown’s faculty office, neuroscientist Joseph Piven, M.D., and his team are studying brain activity in younger siblings of children on the autism spectrum. These infants are part of the larger Infant Brain Imaging Study (IBIS), supported by Autism Speaks and the National Institutes of Health.

“We want to know, do brain changes happen hand-in-hand with behavioral deficits that emerge in early infancy?” says IBIS team member and educational psychologist Heather Hazlett, Ph.D. “For example, do you see brain differences emerge at the same time that you don’t see joint attention developing?”

Babies enrolled in IBIS studies visit the UNC center at 6, 12 and 24 months (some also at 9 and 15 months). They participate in video-recorded behavior assessments. Then, after a parent helps the baby fall asleep, he or she is fitted with noise-reducing headphones and slipped into the “donut hole” of an MRI machine in a darkened room. An attendant gently rests her hand on the baby’s chest to monitor comfort throughout the 45-minute imaging session that follows.

So far, the images that have emerged from these sessions are striking in what they suggest. In a recent paper, Dr. Piven and co-authors (including Autism Speaks’ Dr. Dawson) describe clear autism-associated differences in brain development starting as early as 6 months. These differences involve nerve fibers that connect one region of the brain to another. It is possible that in infants who develop autism, these pathways do not develop normally, Dr. Piven says. The abnormalities may interfere with the brain’s ability to coordinate activity between different brain regions. This, in turn, may lead to the social and sensory problems associated with autism.

These “on average” differences emerge when looking at large numbers of infants, Dr. Piven explains. But they are not diagnostic when applied to any one child. Some infants with normal patterns of brain development nonetheless develop autism, he explains. Others with atypical patterns do not.

For these reasons, it is too early to use brain imaging as a screening tool. However, refinements might lead to MRI screening that could flag high risk infants in the future. Such a “biomarker” might also give researchers a way to measure the beneficial effects of early interventions or new medicines being developed to relieve autism’s core symptoms, Dr. Piven says.

“There’s this sense that we’re catching kids when they’re on the cusp of going one way or another,” Dr. Turner-Brown adds. “They have some good skills and some concerning skills, and you wonder: Are they going to become more engaged with the social world or are they going to become less engaged?

“We hope that with our help, it will be more.”

Editor’s note: Autism Speaks recently launched its “Move the Needle” initiative, a collaboration of researchers, stakeholders and government agencies dedicated to lowering the age of autism detection and improving the quality and availability of early interventions. We invite you to explore related Autism Speaks-funded studies using our website’s Grant Search. For more information about enrolling your family in autism research, please see our Participate in Research page.

Study Addresses ‘Too Many Too Soon?’ Vaccine Concerns

Jessica Sachs — Fri, 29 Mar 2013 04:00:04 PDT

Finds no link between autism and higher exposure to vaccine active ingredients during first two years of life or any one doctor’s visit

March 29, 2013

Today, the Journal of Pediatrics published the first major study to look specifically at a possible link between autism and increasing exposure to the immune-stimulating compounds in early childhood vaccines.

The researchers analyzed the vaccination and medical records of more than a thousand children in three managed care organizations. They totaled each child’s exposure to the immune-stimulating compounds, or antigens, in vaccines up to age 2. (Vaccines vary in the amount of antigens they contain.) The researchers also totaled the maximum exposure to vaccine antigens that each child received in any single day. They then tracked the children’s development through at least age 6.

They found no link between increased risk of autism spectrum disorder (ASD) and higher exposures to vaccine antigens in the first two years of life or on any one day. More specifically, they looked for associations with regressive autism. This subtype of autism involves the development and later loss of early language skills. Here, too, they found no association with increased early exposure to the immune-stimulating compounds in vaccines.

“This study adds to the existing epidemiological studies showing no link between vaccines and autism,” noted Chief Science Officer Geri Dawson, PhD. “This research is very important for addressing the concerns of families. However, we still don’t fully understand the causes of autism. It is crucial that we increase research funding on both the causes and more effective treatments for autism.”

The case-control study was led by epidemiologists in the Immunization Safety Office of the Centers for Disease Control and Prevention (CDC). It included 256 children with diagnosed ASD and 752 normally developing children matched by birth year and gender. Among those with autism, 49 had experienced regression. All the children were enrolled in one of three managed healthcare programs. All those diagnosed with autism underwent in-person assessments. Born between 1994 and 1999, the children received their vaccinations between 1994 and 2002.

The researchers note that the immunization schedule in effect during those years included vaccines that were cruder, or more antigenic, than current vaccines. As such, they were more likely to cause side effects. “Even though the routine childhood schedule in 2012 contains several more vaccines than the schedule in the late 1990s,” they write, “the maximum number of antigens to which a child could be exposed by age 2 years was 315 in 2012, compared with several thousand in the late 1990s.”

Read the full study report here.

Ten Important Things We Know About Autism Today – That We Didn’t Know a Year Ago

Jessica Sachs — Fri, 29 Mar 2013 02:05:39 PDT

Thanks to your support, we know more about helping those with autism than ever before

March 29, 2013

Thanks to your support, research is advancing understanding and treatment of autism spectrum disorder (ASD). Here are ten important things we’ve learned about autism since World Autism Awareness Day in 2012!

1. High-quality early intervention for autism can do more than improve behaviors, it can improve brain function. Read more.

2. Being nonverbal at age 4 does NOT mean children with autism will never speak. Research shows that most will, in fact, learn to use words, and nearly half will learn to speak fluently. Read more.

3. Though autism tends to be life long, some children with ASD make so much progress that they no longer meet the diagnostic criteria for autism. High quality early-intervention may be key. Read more.

4. Many younger siblings of children with ASD have developmental delays and symptoms that fall short of an autism diagnosis, but still warrant early intervention. Read more.

5. Research confirms what parents have been saying about wandering and bolting by children with autism: It’s common, it’s scary, and it doesn’t result from careless parenting. Read more.

6. Prenatal folic acid, taken in the weeks before and after a woman becomes pregnant, may reduce the risk of autism. Here’s the story.

7. One of the best ways to promote social skills in grade-schoolers with autism is to teach their classmates how to befriend a person with developmental disabilities. Read more.

8. Researchers can detect presymptom markers of autism as early as 6 months – a discovery that may lead to earlier intervention to improve outcomes. Read more.

9. The first medicines for treating autism’s core symptoms are showing promise in early clinical trials. Read more.

10. Investors and product developers will enthusiastically respond to a call to develop products and services to address the unmet needs of the autism community. Read more.

Autism Speaks ATN Requests Applications from Hospitals and Academic Medical Centers

Jessica Sachs — Mon, 25 Mar 2013 15:40:43 PDT

Funding will expand access to Autism Speaks Autism Treatment Network care model through partnerships with community providers

March 25, 2013

Autism Speaks is now accepting applications from hospitals and university medical centers wishing to become part of its Autism Treatment Network (AS-ATN).

In this new cycle, Autism Speaks is calling for proposals that emphasize collaborative partnerships between AS-ATN centers and primary care physicians in their surrounding communities. In this way, Autism Speaks aims to raise the standard of care for autism and associated medical conditions and increase the capacity of physicians who can address this public health crisis. At the same time, specialists and researchers within the ATN will continue to advance whole-person treatment of autism through evidence-based research, the development of guidelines and physician training.

“Autism Speaks ATN has pioneered the delivery of whole-person medical care for children and adolescents with autism,” says Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D. “With this new round of grants, we will greatly expand the ATN’s reach into communities in ways desperately needed to care for the growing numbers of individuals affected by autism. The primary care community needs to work closely with specialty care centers to provide a system of care that can meet the growing needs of our children and families.”

Institutions applying to become part of the network must also demonstrate strong plans for helping families navigate the transition from adolescence to adulthood. Other key efforts should include quality programs for comprehensive family support and outstanding multidisciplinary training in autism healthcare.

At present, Autism Speaks ATN consists of 17 medical centers across the United States and Canada. Together, its clinicians are developing the most effective approaches to medical care for children and adolescents affected by autism spectrum disorder (ASD). This includes the delivery of high-quality, comprehensive care carried out by integrated teams of healthcare professionals who understand ASD and excel at treating its associated medical conditions.

Autism Speaks encourages applications from hospitals and academic medical centers with established autism programs that provide multidisciplinary care. Autism Speaks ATN centers receive support of up to $165,000 a year for three years. The initial application, in the form of a letter of intent, is due on April 18, 2013. Further information can be found here. The Autism Speaks ATN leadership will be fielding questions through a webinar on Tuesday, March 26th, at 4:30 pm Eastern. Register for it here.

Federal Panel Urges National Standard for Autism Coverage

Jessica Sachs — Mon, 25 Mar 2013 04:35:03 PDT

Interagency Autism Coordinating Committee urges Secretary of Health to establish national standard for autism health insurance coverage

March 25, 2013

Today, the federal Interagency Autism Coordinating Committee (IACC) sent a unanimously signed letter to Secretary of Health and Human Services Kathleen Sebelius. It urges her to set minimum federal standards of autism coverage for health plans as part of her department’s implementation of the Affordable Care Act.

In the letter, the IACC cited scientific evidence of the effectiveness of early intervention therapies – including but not limited to Applied Behavior Analysis (ABA).

“It is critically important,” the panel wrote, “that this medical coverage be available to privately and publicly insured children, so a two-tiered system for autism care is not created.”

At present, roughly half of states have indicated they will include ABA therapy and other autism behavioral interventions in their “essential health benefits” categories under the Affordable Access to Care Act. Other states are likely to require little or no coverage of autism treatments.

The inconsistency among states is alarming, the IACC wrote. “If benchmark plans in all States do not provide robust and consistent coverage of autism-specific behavioral interventions, we are concerned that some families will be forced to migrate to find coverage, while others will not have access to treatments that can mitigate lifelong disability.”

“The IACC represents a diverse group of stakeholders speaking with a unified voice to urge our federal government to make sure that people with autism have access to behavioral health treatments that we know can greatly improve outcomes and quality of life,” says IACC member and Autism Speaks Chief Science Officer Geri Dawson, Ph.D. The committee includes scientists, self-advocates, clinicians and parents, as well as representatives from the National Institutes of Health, the Centers for Disease Control and Prevention, the Health Resources and Services Administration and the Department of Education.

Read the full IACC letter to Secretary Sebelius here. Add your voice to the IACC committee’s by tweeting Secretary Sebelius @Sebelius or leaving feedback for the Health and Human Services department here.

What Does '1 in 50' Mean for our Community

Jessica Sachs — Fri, 22 Mar 2013 11:06:42 PDT

A Letter from Autism Speaks President Liz Feld

March 22, 2013

Dear friends,

As many of you know from this week’s headlines, a new government health survey of parents indicates that 1 in 50 school-age children are affected by autism spectrum disorder (ASD).

This striking number does not replace the official government estimate of 1 in 88 American children. However it strongly supports research suggesting that the 1 in 88 figure is an underestimate.

In South Korea, Autism Speaks funded a study that sent trained professionals into schools to screen children for ASD. It found 1 in 38 children on the spectrum, a figure much closer to this new survey. Autism Speaks is now replicating the South Korea study here in the United States, in close collaboration with the CDC.

The good news is that the survey’s “1 in 50” results suggest that increased autism awareness is helping more children get a diagnosis. However, it also shows that many children are going undiagnosed until age 7 or older – years after a reliable diagnosis is possible. We must change this – we know that early intervention helps our children do better in school and lead happier, healthier lives.

We’re also encouraged to see a number of our political leaders respond to the new findings by affirming that autism is a public health crisis needing a national public health response.

As we move forward, we want to emphasize two key messages from this week’s news:

* While the “1 in 50” results from this survey do not replace the CDC’s official estimate of 1 in 88 children affected by autism, they add to mounting evidence that large numbers of affected children – and adults – are going undiagnosed and without important services that can improve their lives and enhance their ability to be productive members of our society.

* These numbers underscore the urgent need for a powerful and appropriate national strategy on autism. We need autism benefits to be included in the implementation of the Affordable Care Act!

How fitting that we are approaching World Autism Awareness day, April 2nd, and Autism Awareness Month. Now is our time to come together around this urgent public health issue.

Please join us to Light It Up Blue.

With warmest regards,

Liz Feld
President, Autism Speaks