Today, the Autism Speaks MSSNG program announced its largest upload and release of whole genome sequences from people affected by autism and their family members. The release includes nearly 3,000 genome sequences from participants in the Autism Speaks Autism Genetic Resource Exchange (AGRE).

This brings the total number of whole genome sequences in MSSNG to 5,211 – making it the world’s largest genomic database on autism. The new upload also puts MSSNG over the halfway mark toward its goal of sequencing more than 10,000 genomes from families affected by autism.

A collaboration between Autism Speaks and Toronto’s Hospital for Sick Children, MSSNG uses a cloud-based portal built and managed by BioTeam to make this unprecedented resource available to qualified researchers and medical geneticists worldwide.

 “There’s never been a resource like this for the study of autism, with access to thousands of whole genome sequences and accompanying behavioral and medical information,” says MSSNG Project Director Stephen Scherer. “Already the research community is making use of MSSNG to define new genetic subtypes of autism that will lead to the next generation of diagnostics and treatment options.” Dr. Scherer directs the Centre for Applied Genomics at Toronto’s Hospital for Sick Children.

To date, more than 100 investigators from nine countries have been granted access to the privacy-protected database.

 “The MSSNG dataset has allowed us to discover new parts of the genome involved in autism,” says MSSNG user Michael Snyder, of the Stanford Center for Genomics and Personalized Medicine. “Without any doubt, this unique resource will improve our understanding of the condition.”

“MSSNG has successfully built not just a database but a community of researchers,” adds Autism Speaks Interim Chief Science Officer Mathew Pletcher. “They are truly realizing the goal of using open science and collaboration to answer key questions about autism.” 

As the program advances on its goal of sequencing 10,000 genomes, Autism Speaks seeks input from the research community on how to improve its research platform. Autism Speaks also sincerely thanks all the individuals and families who have contributed their privacy-protected information and DNA samples.

Learn more about MSSNG at www.mss.ng 
(info@mss.ng or call 646-385-8593)

Also see “Gene mapping is now unlocking the mysteries of autism” a special report on MSSNG, now online at CNBC.com. 

Autism Speaks is pleased to announce its first Royal Arch Masons Predoctoral Fellowship. Royal Arch Masons Fellow Sophie Schwartz, of Boston University, will investigate how differences in the way the brain processes sound may interfere with language development in minimally verbal children who have autism.

“We are proud to sponsor a General Grand Chapter Royal Arch Masons Fellow, says General Grand High Priest Louis E. Bartrand, of the General Grand Chapter Royal Arch Masons International. “Her efforts, in conjunction with the other organizations and researchers that we support, may well produce discoveries about central auditory processing disorders that have eluded scientists in the past. We wish her well and look forward to hearing about her work in the near future.”

Since the 1970s, the Royal Arch Masons International have ranked among the world’s leading philanthropies helping children with central auditory processing disorders. Many children with autism have difficulty processing sound. This can include difficulty using and comprehending speech and/or paying attention to and remembering spoken information. Many of these children eventually receive a diagnosis of central auditory processing disorder in addition to their autism.

Ms. Schwartz’s findings have the potential to guide the development of new interventions to support language development and other forms of communication in non-verbal and minimally verbal people who have autism spectrum disorder (ASD).

She will conduct her research at Boston University under the guidance of developmental psychologist and autism specialist Helen Tager-Flusberg and auditory neuroscientist Barbara Shinn-Cunningham.

Read more about Ms. Schwartz’s research project, titled “Cortical Markers of Central Auditory Processing Disorder in Minimally Verbal Children with ASD,” here.

“There's a huge need to understand why some children with autism have such difficulty developing communication,” says Paul Wang, Autism Speaks senior vice president and head of medical research. “We greatly appreciate Ms. Schwartz’s plan for advancing understanding of these issues in ways that promise to shape more-effective interventions, and we’re very grateful to the Royal Arch Masons for making this fellowship possible.” 

In 2011, Autism Speaks and the Royal Arch Masons forged a special relationship that has included $1 million in pledged funding over seven years. The funding supports both the Autism Speaks Toddler Treatment Network and research into auditory processing in children who have autism. In addition, the funding has helped Autism Speaks educate healthcare providers and parents about the role that auditory processing symptoms can play in autism diagnosis and the importance of further evaluation for children who demonstrate auditory processing difficulties.

In related news, Autism Speaks also announced its 2016 class of Weatherstone predoctoral fellows. Read about them and their groundbreaking projects here.

Autism Speaks is pleased to announce its eighth annual class of Weatherstone Predoctoral Fellows. Selected from a highly competitive pool of applicants, this year’s three young investigators will pursue two-year autism research projects under the mentorship of leading scientists.

Autism Speaks established the Dennis Weatherstone Predoctoral Fellowship Program in 2008 with a generous grant from the Stavros Niarchos Foundation. The program honors the late financier Sir Dennis Weatherstone and his commitment to the education of early career scientists pursuing autism research. Lady Weatherstone and daughter Cheryl Weatherstone continue to actively support this fellowship program on a personal level. 

The 2016 class brings the number of Autism Speaks Weatherstone predoctoral fellows to 63.

“We extend our thanks to the Stavros Niarchos Foundation and the Weatherstone family for their continuing investment in the next generation of ground-breaking researchers," says Autism Speaks Interim Chief Science Officer Mathew Pletcher. “These young scientists embody Autism Speaks’ ongoing commitment to shape the future of autism science by supporting training and research opportunities for the field’s brightest new investigators.”

Developmental pediatrician Paul Wang, Autism Speaks senior vice president for medical research, oversees the fellowship program. “Many Weatherstone fellows have already made important findings that advance our understanding of autism and how to best meet the needs of those affected by it,” Dr. Wang says. (See the links at the end of this news item to learn more about past and ongoing fellowship research projects.)

This year’s class of Autism Speaks Weatherstone fellows include:

Eric Rubenstein, of the University of North Carolina, will explore the association between autism symptoms in children diagnosed with the condition and autism-like behavioral traits in their parents (who don’t have autism). The goal is to better understand how and when inherited factors play a role in the development of autism and then use this information to tailor interventions that can best meet a child’s needs. The study also promises to deepen understanding of the inherited traits and biology of different subtypes of autism. Mr. Rubenstein’s fellowship mentors at UNC include epidemiologist Julie Daniels, public health statistician Amy Herring and developmental psychologist Rebecca Edmondson Pretzel. Read more about his research project here.

Stephen Siecinski, at Duke University, will be investigating how individual differences in epigenetics and gene expression may affect treatment response to oxytocin. He will be doing so using blood samples from participants in SOARS-B, a large clinical trial evaluating oxytocin nasal spray as a treatment for improving sociability in people who have autism. He will also use a mouse model of autism to advance understanding of oxytocin’s effects in the brain. Mr. Siecinski’s mentor is geneticist Simon Gregory and his co-investigators include Yong-hui Jiang and Lydia Kwee. Read more about his research project here.

Anne Martin, at the University of Utah, will study the role that the autism-linked Kirrel3 gene plays in the development of synapses – the bioelectrical connections between brain cells. This work promises to advance understanding of how problems in synaptic function may cause some types of autism. Ultimately, this may lead to the development of new autism therapies that improve synaptic function. Ms. Martin will pursue her research using 3D electron microscopy to define synaptic defects in Kirrel3-knockout mice. She will also test whether and how autism-associated Kirrel3 missense mutations impair synaptic function. Ms. Martin will be working in the lab of her mentor, neurobiologist Megan Williams. Read more about her research project here.

In related news, Autism Speaks also announced its first Royal Arch Masons predoctoral fellowship. Read about it here.

For more about Autism Speaks research fellows and their ground-breaking studies, also see:

* Easing anxiety in kids with autism and limited verbal skills

* Helping nonverbal children with autism learn to speak

* New evidence links immune irregularities to autism

* Pivotal Response Training may improve brain responses to social cues

* Research on girls provides insights into severe autism

* Genes, older dads and autism

* Why autism risk rises with mom's age: Study may shed light

* Remote coaching helps parents deliver autism therapies

* Stopping dangerous behavior in children and teens with autism

* Why study what causes of autism?

Autism Speaks is proud to be a major sponsor of the International Meeting for Autism Research (IMFAR), taking place this week in Baltimore. The annual meeting is the world’s largest gathering of autism scientists, doctors, therapists, parents and individuals on the spectrum.

Events will include more than sixty scientific presentations by Autism Speaks staff and funded researchers. You can view the full lineup of Autism Speaks-affiliated presentations and activities below.

"When researchers and clinicians can meet to share the results of their work and develop new collaborations, it powerfully speeds discovery and development," says Autism Speaks Interim Chief Science Officer Mathew Pletcher. "For the field of autism research, IMFAR has provided this opportunity, and Autism Speaks is proud to be a long-time sponsor."

Follow our daily coverage from IMFAR 2016 here.

Early findings from a new study suggest that children with autism are more likely to get screened, diagnosed and treated in states where health plans must cover autism-related care.

The researchers found that 1 in 555 insured children had received an evaluation that led to an autism diagnosis in states where commercial health plans were required by law to cover autism-related medical services. By contrast, only 1 in 625 insured children in states without such a mandate had been evaluated and diagnosed.

However, even the improved diagnosis rate remains far below autism’s estimated prevalence of 1 in 68 American children, says lead researcher David Mandell, of the University of Pennsylvania School of Medicine. “Mandates may be a necessary but insufficient policy for helping children obtain services reimbursed through private insurance,” he says.

Dr. Mandell presented his team’s preliminary findings today at the press conference preceding the annual International Meeting for Autism Research (IMFAR), in Baltimore. 

Read all our IMFAR 2016 coverage here.

Currently, 44 states have passed insurance mandates that require most commercial health plans to pay for diagnosis and treatment of children with autism. Health insurance companies administer commercial insurance health plans. They differ from self-funded plans operated by employers.

The researchers analyzed information from three of the nation’s largest insurers: United HealthCare, Aetna and Humana. They compared autism diagnosis and service rates among children covered by commercial insurance with those who weren’t. They also compared rates between children who lived in states with autism-insurance mandates to those who didn’t.

Overall, the analysis found that state autism insurance mandates increased diagnosis and treatment rates by 13 percent, after controlling for other variables. The effect increased the longer such mandates were place. The average increase in autism services associated with mandates was 10 percent the first year after a state mandate became law. This rose to 17 percent the second year and 18 percent the third year.

But even three years after implementation, the percentage of children receiving autism services was significantly lower than autism’s estimated prevalence of 1 in 68, Dr. Mandell says.

“This finding may allay concerns that mandates will substantially increase insurance costs, but it suggests that many commercially insured children with autism remain undiagnosed or are being treated only through publicly funded systems,” he says. “Our next step is to examine the effects of these mandates on spending for healthcare among children with autism.”

Autism Speaks has long been a major advocate for state and federal laws that require healthcare insurers to cover autism-related services.

“The good news is that this study shows that treatment rates do increase with each passing year in states with autism insurance laws,” comments Judith Ursitti, Autism Speaks director of state government affairs. “But it’s also worth noting that after an autism insurance law is passed, it takes years to get provider networks in place and get health plans in compliance.”

Stay up to date on autism advocacy efforts in your state
by signing up for Autism Votes here.

Read about Dr. Mandell’s Autism Speaks-funded research
on the economics of autism here.

View more photos from IMFAR 2016 below:

Read about all the scientific presentations made at the IMFAR 2016 press conference here.

By Audrey Wolfe, AIR-P clinical coordinator

This week at the International Meeting for Autism Research (IMFAR), researchers from the Autism Speaks Autism Treatment Network (ATN) and its Autism Intervention Research Network for Physical Health (AIR-P) presented early findings from 15 studies selected as being among the most important of the year. The research covered a range of topics including gastrointestinal symptoms, sleep problems, behavioral issues, nutrition, gender differences in autism-related medical issues, access to services and more.

Below are brief summaries of the 15 presentations. To read the full text of the scientific abstracts, click here.

Gastrointestinal symptoms in ASD. This AIR-P funded research study examined whether GI symptoms are associated with increases in stress-associated endocrine and cytokine biomarkers in children who have autism. The sample included 120 children ages 6 to 18 recruited through two ATN sites. Findings suggest that children with autism and GI symptoms may have an increased response to stress, but that this effect is not associated with concomitant changes in stress-associated cytokines.

Restricted and repetitive behaviors and sleep disturbance. This study analyzed information in the Autism Speaks ATN Registry to investigate the association of sleep problems in children with autism and restricted and repetitive behaviors: repetitive sensory motor behaviors and resistance to change (insistence on samenesss). The analysis included registry information on 339 children ages 2 to 17. The findings support previous research indicating that restricted and repetitive behaviors are two separate factors.

Describing family navigation as a service model. The objective of this ATN-funded study was to 1) develop an operational definition of family navigation for the ATN; 2) describe the common service models of family navigation within the ATN; and 3) identify potential best practices and appropriate outcome measures to evaluate the effectiveness of a family navigation models for children with autism. The researchers found that all family navigators provide referrals for community services (100 percent), educate parents on available options and the service system (92 percent) and help empower families (62 percent). This study will be expanded upon to develop an effective family navigation model for ASD that can be shared more broadly.

Implementing behavioral interventions in hospital settings. Several abstracts related to this AIR-P funded study will be presented at IMFAR. The main study investigated the feasibility of implementing brief Analogue Functional Analysis (AFA) in an inpatient setting for children with autism to improve and guide care during hospitalization. The pilot study included 36 children ages 6 to 18. Investigators also examined the ability to draw relevant financial data from existing electronic medical records to quantify potential costs of hospitalization. They were able to quantify length and total cost of hospitalization, use of physical/medical restraint and staffing ratios for all patients.

Latency based functional analysis in hospital settings. Building on the above study, investigators examined descriptive evidence of the capability of latency based functional analysis (LBFA) to identify functional reinforcers for problem behavior when conducted within typical inpatient hospital settings. A subset of 18 children in the larger study participated in this study. Results indicate that it is possible to identify behavior function through LBFA conducted by new therapists in inpatient hospital units after evoking and reinforcing a minimal number of target responses.

Bone microarchitecture in ASD. This AIR-P funded study aimed to assess distal radius and tibial microarchitecture in adolescent boys with autism compared to typically developing boys. The sample included 34 boys (16 with autism, 18 typically developing) from a single ATN center. Results show reductions in bone strength estimates at the distal radius and tibia, which may result from lower physical activity causing increased bone resorption in boys with autism compared to typically developing boys.

Impact of (special education services) and race on service utilization. This study analyzed information in the Autism Speaks ATN Registry to identify how disparities in race/ethnicity, parent education, SES and insurance type affect medical and therapy services for children with autism. By analyzing information on more than 4,000 kids previously enrolled in the ATN Registry, the investigators found patterns of service use vary by race and special education services.

Sleep and behavioral problems in children with ASD. The purpose of this study was to examine the relationships between distinct types of sleep and behavioral problems (aggression, irritability/hostility, inattention and hyperactivity) in children with autism. Participants included 81 children and adolescents ages 3 to 19 with autism, all recruited through one ATN center. Results show that sleep disturbance is associated with behavioral dysregulation among children with autism.

Bringing best autism care to primary care. This study used the ECHO (Extension for Community Healthcare Outcomes) model of telehealth to disseminate evidence-based screening and management guidance to community providers. In all, 14 primary care providers participated in ECHO® Autism clinics facilitated by an interdisciplinary team of autism and behavioral experts at the University of Missouri. This study showed that the ECHO Autism model is an effective model to improve primary care provider effectiveness in identification and management of autism.

Gender differences in co-morbidities in children with ASD. This observational study of the Autism Speaks ATN Registry explored differences in medical and behavioral issues by gender in a sample of 3,981 children (662 females and3,319 males) ages 2 to 5 years with autism. Results show a higher prevalence of medical and behavioral co-morbidities in females, but no difference between genders regarding the types of medications prescribed, severity of autism symptoms, age of first concern and age of diagnosis.

Therapy and medication use in children with ASD. This secondary data analysis of the ATN Registry described interventions received by young children, ages 36 to 72 months, with autism six months or more after diagnosis. Findings indicate that relatively few young children with autism are receiving evidence-based behavioral therapies and few are receiving psychosocial interventions at the recommended intensity.

Omega 3 Fatty Acids and ASD. This AIR-P funded study assessed reported use of DHA and EPA, two commonly used nutritional supplements for children with autism. It looked at both diet and nutritional supplementation as well as to examine the demographic and behavioral characteristics of children who are or are not given DHA and EPA supplementation. The study sample included 286 participants ages 2 to 11 from five ATN sites. Only 1 of the 286 participants (a nonsupplement user) met the daily requirement for DHA and EPA from diet alone. This study suggested that children (in this case, with autism) tend to be deficient in their intake of Omega 3 Fatty acids when the nutrients come from diet alone.

Somatosensory difficulties with behavior problems. This retrospective study used information on 6,902 children and adolescents from the Autism Speaks ATN Registry. The aim of this study was to determine the relationship between somatosensory difficulties and problem behaviors in children with autism, including investigation of the relation of individual somatosensory domains with specific problem behaviors. Findings demonstrate a strong relationship between somatosensory difficulties and problem behaviors in a cross-sectional sample of children with autism.

Follow our daily coverage from IMFAR 2016 here.

View photos from IMFAR 2016 below.

As it has each year, Autism Speaks was pleased to co-sponsor the Community Stakeholders Luncheon at the annual International Meeting for Autism Research (IMFAR). This year, other co-sponsors included the Autism Science Foundation, SPARK (the Simons Foundation Powering Autism Research for Knowledge) and the Olitsky Family Foundation.

The annual luncheon honors individuals and families affected by autism and their supporters.

This year’s featured speakers were Caren Zucker and John Donvan, authors of In a Different Key – the Story of Autism. The book tells the story of autism through the lives and civil-rights battles of those affected by the condition. "This is the message of our book," Mr. Donvan said, "that everyone has a part to play in creating communities where people with autism are supported."

Below are some snapshots from the event.

For more coverage from IMFAR 2016, click here.

Today at the International Meeting for Autism Research (IMFAR), microbial geneticist Ruth Ann Luna reported the first results from her team’s pioneering investigation into the intestinal microbiome’s role in autism-related GI distress and behavioral problems.

The study is one of the first major projects funded by the Autism Speaks “Gut-Brain Research Initiative.” Dr. Luna directs the medical metagenomics program at the Texas Children’s [Hospital] Microbiome Center, in Houston.

The microbiome includes trillions of intestinal microbes that help us digest our food. In recent years, research has shown that this microbial community also helps regulate the immune system and that imbalances can affect health throughout the brain and body. In particular, some autism researchers have found that some – perhaps many – children with autism have unusual species or imbalances of gut bacteria. Still other studies have made clear that GI problems are unusually common among children with autism.

Dr. Luna’s IMFAR presentation – “A Case Study of the Gut Microbiome in ASD: Correlation of Microbial Profiles with GI and Behavioral Symptoms” – described several stand-out findings from a two-week study analyzing the bacteria found in daily stool samples from a child affected by autism and gastrointestinal (GI) issues. For comparison, the researchers also analyzed the bacteria present in the stool of the child’s unaffected sibling.

Among their notable findings:

* All of the daily stool samples from the child with autism contained four organisms that earlier research had associated with autism. These included Sarcina ventriculi, Barnesiella intestihominis,Clostridium bartlettii, and Clostridium bolteae. By contrast, none of these bacteria appeared in the stool of the unaffected sibling.

* The bacterium Haemophilus parainfluenzae appeared in the stool of the child with autism during a three-day period when the child experienced GI pain, diarrhea and a spike in challenging behaviors including self-injury.

* On a separate two-day period, another spike in H. parainfluenzae correlated with another increase in self-injurious behavior – but this time without any change in stool consistency or obvious signs of GI pain.

The appearance of H. parainfluenzae in the child’s stool came as a surprise to the researchers. This bacterium normally resides in the respiratory tract, where its overgrowth can cause ear, throat and lung infections. None of those sicknesses were present in the child or family members during the study period, Dr. Luna said.

Guidance for larger study
The primary purpose of the case study was to help the team develop the best methods for their larger autism microbiome investigation. For example, they wanted to determine whether a single stool specimen could accurately capture a child’s intestinal microbiome. In other words, does the gut’s microbial community remain stable or does it change significantly from day to day in significant ways.

Based on the intriguing results of this first case study, the researchers plan to collect daily stool samples from a subset of the study participants in the larger study underway.

“In our larger study, we hope to determine whether there are subgroups of children with autism who can be helped by having their gut microbiome characterized – in addition to the usual diagnostic tests for autism,” Dr. Luna says. “In these cases, there may be new treatment pathways that can significantly improve behavioral issues and GI distress – even when outward GI symptoms such as constipation or diarrhea aren’t obvious.”

Participants still needed
The Texas Children’s Hospital study continues to recruit children with autism and their unaffected siblings, as well as children in families unaffected by autism. Participation involves the collection of stool samples and a series of surveys and diaries completed by parents. Interested families can contact Dr. Luna at raluna@bcm.edu.

For more on this research, also see Dr. Luna’s blog: “A gut feeling: Unlocking the mysterious of autism with Autism Speaks.”

For more coverage from IMFAR 2016, click here.

More photos from IMFAR below.

Today at the International Meeting for Autism Research (IMFAR), keynote speaker Paul Shattuck challenged his fellow academics – and the agencies and organizations that fund them – to rethink how they ensure that record-setting investments in autism research are improving lives across the lifespan.

Dr. Shattuck is the director of the Life Course Outcomes Research Program of Drexel University’s A.J. Drexel Autism Institute, in Philadelphia. Dr. Shattuck is also a member of the Autism Speaks Family Services Committee.

“There have been many calls to ‘move the needle’ on adult outcomes,” he said. “But we still need to build the gauges to see if adult outcomes are truly improving over time.”

By what few measures are available, he said, it appears that, overall, young adults on the autism spectrum are doing poorly despite historic expenditures into research and interventions.

By way of example, Dr. Shattuck noted the “National Autism Indicators Report” that his team released earlier this month. (Autism Speaks Vice President of Adult Services Leslie Long served on the report’s advisory panel.)

The report found that nearly 18,000 people with autism used state-funded vocational rehabilitation programs in 2014, more than double the number five years earlier. But only 60 percent of these people left the program with a job. And 80 percent of these worked just part-time at a median weekly rate of $160, putting them well below the poverty level.

In part, he proposed, we’re doing so poorly in supporting the transition to adulthood because such a thin sliver of autism research funding is going toward lifespan issues such as developing effective supports to improve success in employment and community integration.

The recent “Portfolio Analysis Report,” by the Interagency Autism Coordinating Committee (IACC) put that sliver at just 1 percent of total autism research expenditures in 2012, Dr. Shattuck noted. (See graphic below.) 

“I don’t have all the answers,” he said. “But the fact that there are cries to move the needle on adult outcomes in the context of tiny outlays in support of adult research reminds me of a quote attributed to Henry Ford: ‘If you always do what you’ve always done, you’ll always get what you’ve always got.’ The only way we can move the needle on outcomes is to first move the needle on funding for a research agenda that prioritizes services and life course questions.”

Adding to the urgency, Dr. Shattuck said, the Workforce Innovation and Opportunity Act, passed last year, requires all states to dedicate at least 15 percent of their vocational rehabilitation budgets to programs for transition-age youth (teens and young adults).

“So here we are embarking on a huge policy experiment, with state governments spending huge amounts of money, but with little guidance and no plan for measuring whether any of this effort is having the desired impact of improving to lives,” he warned.

The solutions must go beyond traditional academic research, Dr. Shattuck warned. “It takes a lot of outreach with legislators and their staffers, on both state and federal levels,” he said. “It’s not the kind of effort that is traditionally valued in academia with our culture of peer-reviewed journals as the way to impress other academics.”

At the same time, he noted that his team’s 2015 “National Autism Indicators Report: Transition into young adulthood” was selected by the IACC as one of the most influential papers of the year. “That helps counter critics who say that the applied indicators work we’re doing isn’t real science that merits funding.”

In conclusion, Dr. Shattuck noted that when he started his career in the field of autism research in the 1990s, it was “a tiny field” but one where a small handful of research and advocacy organizations were making a strategic effort to get researchers to turn their attention to neglected areas of research. “I think what we need is a return to such a big vision strategy on the funding side to incentivize work in the vital area of lifespan issues.”

Autism Speaks has funded and continues to fund lifespan research and support programs, including work by Dr. Shattuck. To learn more about these programs, also see:

* More than $3 million in grant funding for services for adults who have autism

* TheSpectrumCareers.com, a jobs portal for adults with autism

* Building Independent Lives through Training (BILT), an online course for those who support the daily living needs of adults with autism

* The Autism Speaks Employment Tool Kit, Housing and Residential Supports Tool Kit, Adult Diagnosis Tool Kit and Transition Tool Kit

* Housing and Community Living Initiative to increase access to home and community-based services 

Follow all our IMFAR coverage here.

View photos from IMFAR 2016 below.

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As a major sponsor of the International Meeting for Autism Research (IMFAR), Autism Speaks has the honor, each year, of addressing attendees with an update on the organization’s research activities and priorities.

On Friday, Autism Speaks President and Chief Executive Officer Angela Geiger welcomed IMFAR attendees, expressed how pleased she was to join Autism Speaks and reaffirmed the organization's commitment to research.

“The one thing I want you to take away from my remarks this morning is Autism Speaks' continuing and steadfast commitment to autism research," Ms Geiger said. "We look forward to a renewed focus on how we collaborate and what we accomplish.”

Following Ms. Geiger's remarks, Autism Speaks Interim Chief Science Officer Mathew Pletcher delivered the organization’s annual update to the autism research community and its stakeholders. Below are his full remarks:

 “Thank you all for attending and participating in this year’s International Meeting for Autism Research. I really appreciate the opportunity to come before you this morning to tell you about some of the work that we’re conducting and supporting in furthering our mission at Autism Speaks.

From the earliest days of our organization, it’s been the central pillar of Autism Speaks to support the research community in developing a deeper understanding of the causes of autism as well as the developing new and improved therapies for individuals with autism.

One of the main mechanisms we’ve used to pursue this goal has been the awarding of grants. We continue to maintain a very active grant portfolio at Autism Speaks. There are currently 79 active projects that Autism Speaks supports through its grant program. These grants providing a total of $24.7 million in support.

The research conducted through our grant program covers a diverse area that includes the development of new cell and animal models, work to understand the genetic and environmental causes of autism, as well as the development of improved biomarkers and diagnostic techniques.

We’ve also looked for opportunities to seed new areas of research that may not be attracting investment from the NIH. Areas that are exciting and novel, yet still need support to develop that key data set that will eventually attract federal funding.

One of the new areas that we’re focusing on is the microbiome and its relationship to the GI issues suffered by many people with autism. We want to help explore possible connections between these GI issues and some of the behavioral issues also observed in autism.

We also continue to make it a priority to help support individuals just starting their careers in autism research. We recognize that in order to attract the best and brightest to the field of autism research, we need to be able to support them at the earliest stages of their careers.

Just last week we announced the awarding of four new fellowships to individuals undertaking pre-doctoral training. Ann Martin at the University of Utah, Eric Rubenstein at the University of North Carolina, Steven Sinisky at Duke University and Sophie Schwartz at Boston University received our Weatherstone and our first ever Royal Arch Mason fellowships to conduct their early training and research.

One of the more ambitious projects that we’ve undertaken in the last couple of years is our MSSNG program. MSSNG is a public private partnership that involves Autism Speaks, Stephen Scherer at Sick Kids Hospital in Toronto, and Google. This effort is generating 10,000 whole genome sequences from individuals in families affected by autism, then making that data available in combination with deep phenotypic characterization of those individuals – all available in an open-science format on the Google Cloud Platform.

This project has been running at full steam over a year, and at this point we’ve completed the sequencing of nearly 7,000 full genomes. Of these, 5,000 are already openly available to the autism research community. In fact, at this point 93 different researchers from 40 institutions in nine countries have applied for and received permission to work on the MSSNG dataset.

This work is already showing tangible results.

Last year, Stephen Scherer published the first paper out of the MSSNG dataset in Nature Medicine. We are currently aware of two additional papers under review that likewise make use of the MSSNG data set and will continue to expand our knowledge around the characterization of genetic subtypes of autism.

We are also entering a very exciting phase of MSSNG. In addition to the fact that we will likely reach our goal of 10,000 whole genome sequences publically available by the end of this year, we are initiating work now to build a community portal.

The community portal will serve as a way to return the genetic data we’re developing through MSSNG to the families who so kindly agreed to participate in MSSNG and share their genetic information and their clinical and health data with the research community.

Obviously as an organization that represents the families, we feel it’s essential that they have the opportunity to benefit – not sometime in the future – but now from this valuable data and be able to use it in their own journey with autism. We are making sure to make this happen through the building of the community portal.

As we continue to think about where projects like MSSNG will go, one of the big areas of focus is connecting the data to clinical care and being able to use it in the development of personalized care plans.

One of the ways that we think we can do this is through the Autism Speaks Autism Treatment Network, which represents 14 clinical centers of excellence for the delivery of care to individuals and families with autism. More than 30,000 children and teens with autism receive treatment through the Autism Treatment Network in the course of each year.

And we look forward to be able to take the data coming out of MSSNG and bring it into this clinical setting and be able to understand how that genetic data can improve outcomes through this kind of partnership.

At the same time, our Autism Treatment Network itself is looking at new and better ways to provide care to the autism community. One of these initiatives is ECHO – the Extensive for Community Health Outcomes. The goal of the ECHO initiative is to use the technology and principles of tele-health and tele-mentoring to spread the expertise and the understanding and the best practices developed within the ATN. In delivering this expertise to underserved populations, ECHO can help ensure that people who don’t live within easy driving distance of one of the 14 ATN sites will still have the opportunity to benefit from that collective knowledge.

Finally one last project that I’d like to make mention this morning is the development of the Preclinical Autism Consortium for Therapeutics, or PACT. This is a collaboration involving Mustafa Sahin, Jackie Crawley and Carrie Jones at Boston Children’s, UC Davis and Vanderbilt.

The goal of PACT is to develop and validate a number genetic mouse and rat models of autism in both behavioral assays and molecular endpoints. The purpose is to address a gap in the current drug development pipeline.

If we hope to attract more industry investment in the development of new therapeutics, it’s critical that we have in place the tools that will allow us to properly access the potential of any new therapeutic ahead of a clinical trial. In fact, we received early validation of this model. Multiple small biotech companies have come forth and expressed interest in utilizing the tools that PACT has developed to evaluate their proprietary small molecules and determine if in fact there is a path forward for the use of them in individuals with autism.

I’d like to conclude by saying that we at Autism Speaks are always looking to receive feedback and engage in conversation with the research community on how we can best make use of our resources. During the course of today, you’ll find a number of us at the Autism Speaks booth just outside this room. We welcome each of you to come and join us at the booth and engage in conversations around on how we can better serve the research community and what we can do together to move forward this entire area of research for the benefit of every single person who has autism. Thank you.”

For more coverage from IMFAR 2016, click here.

More photos from IMFAR 2016 below.

Today at the International Meeting for Autism Research (IMFAR), Autism Speaks Weatherstone Fellow Rylan Allemang-Grand described how magnetic resonance imaging (MRI) could be used to track treatment response to gene therapy in future clinical trials for Rett syndrome.

Mr. Allemang-Grand is pursuing his Autism Speaks research project –
“Monitoring treatment-induced neuranatomic changes in a mouse model of Rett syndrome”– at Toronto’s Hospital for Sick Children.

Rett syndrome affects primarily girls and produces a progressive and debilitating form of autism that includes loss of language and motor control as well as profound medical problems. Its symptoms stem from a defective copy of a gene called Mecp2. Mecp2 is known as a “master gene” because it regulates the activity of many other genes vital to development and health.

Because a defective Mecp2 gene has such broad effects, many experts agree that gene therapy may offer the best chance for treatment.

Though gene therapy for Rett syndrome could be years away, in 2007 geneticist Adrian Bird showed that, in theory, the syndrome could be reversed by restoring or replacing the Mecp2 gene. He did so by creating a genetic off-on switch in mice. This allowed him to keep the Mecp2 gene turned off during the mouse’s development to cause the animal equivalent of Rett syndrome. When he then switched the gene on, it partially reversed the disorder's symptoms – even in severely affected adult mice.

In his IMFAR presentation, Mr. Allemang-Grand described how, using MRI brain scans, he was successful in tracking how activation of the Mecp2 gene in Rett-syndrome mice restored normal brain development – at least in some parts of the brain. His results went further than previous research by showing that some parts of the brain respond much more strongly to reactivation of the Mecp2 gene than do others. “It may be that we need other targeted treatments to rescue certain parts of the brain,” he said.

In addition, Mr. Allemang-Grand found that reactivating the Mecp2gene when the mice were just 50 days old produced a stronger response (greater increases in brain volume) than did waiting until the mice had reached adulthood at 80 days. This may indicate that “the earlier the better” when it comes to gene therapy for Rett syndrome.

Comments Autism Speaks Interim Chief Science Officer Mathew Pletcher:

“It’s encouraging to see that the gene therapy approach continues to show great promise as a transformative therapy for some subtypes of autism, even after childhood. If these approaches are going to be approved for use by people with Rett syndrome, we will need non-invasive methods to measure the benefit that the therapies would producing. Rylan’s research is an important step on the path to a possible clinical trial.”

For more on gene therapy for Rett syndrome, also see this past news coverage:
Gene therapy reverses Rett syndrome in animal model
Experimental diet supplement eases autism-like behaviors in mice

For more coverage from IMFAR 2016, click here.

Today at the International Meeting for Autism Research (IMFAR), Harvard neurologist Mustafa Sahin discussed how clinical trials of experimental medicines for tuberous sclerosis have a unique potential for advancing treatments for many types of autism.

Read all our coverage of IMFAR 2016 here.

Tuberous sclerosis complex (TSC) is a rare genetic disorder that involves the early growth of non-cancerous tumors in the brain and body. Around half of children diagnosed with TSC go on to develop autism.

Dr. Sahin and his research team recently concluded a phase II clinical trial testing the ability of the anti-tumor drug everolimus to improve cognition and reduce symptoms of autism, epilepsy and disturbed sleep in children with TSC. A research grant from Autism Speaks helped fund the study, alongside support from the Tuberous Sclerosis Alliance and the healthcare company Novartis.

In news reports over the last three years, several families reported dramatic improvements in some of the 47 children with TSC and autism who participated in the study. Dr. Sahin cautions, however, that his team has only recently unmasked which children received the actual medicine and which received a look-alike dummy pill. Only now can they begin analyzing whether the medicine is associated with significant improvements in cognition and symptoms.

“It’s so important to do double-blinded studies like this,” he explains, “because we know that open-label trials give us higher rates of optimistic results that can’t always be replicated.” In other words, blinding a trial helps researchers factor out the positive effect of expectations – both theirs and those of participating families.

At IMFAR this week, Dr. Sahin was able to report that the children in the study experienced very low rates of possible side effects – an important indicator that everolimus is safe and well tolerated.

Gaining new insights from clinical studies
At the heart of Dr. Sahin’s IMFAR presentation were his recommendations for improving future clinical testing of everolimus and other experimental medicines for autism.

In particular, he recommended the use of brain imaging (MRI) and high-tech analysis of electroencephalography (EEG) to track how experimental treatments change physical brain structures. In his research with tuberous sclerosis, for example, such methods would allow researchers to track changes in the altered brain connections frequently seen with tuberous sclerosis and some other types of autism.

Such brain-structure changes may prove to be important indicators of when a treatment is helping or is likely to help someone who has tuberous sclerosis and/or autism. “Our goal is to identify whether there are other subtypes of autism that involve alterations to the same pathways – and so may also benefit from the same treatments,” Dr. Sahin says.

Indeed, one of the major unanswered questions in autism research is which brain regions and which types of brain cells are involved in the condition, experts agree. Brain imaging and EEG analysis promise to provide important insights in this area, Dr. Sahin suggests.

In recent years, he notes, whole genome sequencing has associated autism with upwards of a thousand different genetic changes. This has fostered interest in finding whether some or many of these different gene changes affect common brain pathways – and so, may respond to the same or similar treatments.

Ensuring that each clinical trial builds on the last one is the best way to advance the development of autism medicines, Dr. Sahin concludes. “We will likely go through this circle of discovery several times to come up with safest and most effective medications for tuberous sclerosis and other forms of autism. It will take a number of trials, each one giving us better and better results as we go forward.”

Dr. Sahin also credited studies in animal models of autism for contributing to “crucial insights into how to develop better therapies.” By way of example, he noted that Autism Speaks Preclinical Autism Consortium for Therapeutics (PACT) is supporting the improvement of animal models and other tools for early testing of promising medicines.

In closing, Dr. Sahin expressed confidence that within the next decade, basic research and clinical trials will together deliver an effective medicine to ease the core symptoms of at least some types of autism.

Read Dr. Sahin’s IMFAR abstract – “Clinical Investigations in TSC” – here.

For more on Dr. Sahin’s research, also see
“Progress report on precision therapies for autism.”

Photos from IMFAR 2016 below.

The International Society for Autism Research (INSAR) is hosting a free series of six weekly online seminars on research into the familial aspects of autism.

The INSAR Summer Institute 2016 will run Thursdays from June 23 to July 28 (times vary) and will cover topics including family risk factors, parent-led interventions, autism in adulthood and autism symptoms in siblings who don’t meet the full criteria for an autism diagnosis.

The presentations are geared for students, post-doctoral fellows and other early career investigators interested in autism research. Clinicians and established researchers can benefit from overviews of topics outside their expertise. The public – including families affected by autism – are likewise welcome 

Sessions offered: 

June 23, 3 pm Eastern: Anthony Bailey – Familial Risk Factors and Comorbidities 

June 30, 2 pm Eastern: Joseph Piven – Infant Siblings of Children with ASD 

July 7, 1 pm Eastern: Connie Kasari – Parent and Family-Led Interventions 

July 14, 11 am: William Mandy – Sex Differences in ASD 

July 21, 7 pm: Patricia Howlin – ASD in Adulthood

July 28, 10 am: John Constantino: The Broader Autism Phenotype 

Registration is free and available worldwide.
Visit the INSAR website for program details and free registration for a myINSAR account. (INSAR membership not required)

The Interagency Autism Coordinating Committee (IACC) invites the autism community to help identify priorities for its 2016 update to The IACC Strategic Plan for Autism Spectrum Disorder.

The update will cover research, services and policy issues related to the seven questions outlined in previous IACC strategic plans, last updated in 2013.

These topics include:

* When Should I Be Concerned?

* How Can I Understand What Is Happening?

* What Caused This to Happen and Can It Be Prevented?

* Which Treatments and Interventions Will Help?

* Where Can I Turn for Services?

* What Does the Future Hold, Particularly for Adults?

* What Other Infrastructure and Surveillance Needs Must Be Met?

“This is a unique opportunity for our community to help shape funding priorities at the national level,” says Angela Geiger, president and CEO of Autism Speaks. “We ask for people with autism, families and stakeholders to reach out and allow their voices to be heard to ensure that the strategic plan represents the concerns and needs of every individual on the spectrum.”

The comment period will remain open through July 29, 2016.

Click here to submit your comments.

The federal Interagency Autism Coordinating Committee (IACC) invites the autism community to participate in its next quarterly meeting – Tuesday, July 19, from 9 to 5 Eastern at the National Institutes of Health, in Bethesda, Maryland.

Under the mandate of the Autism CARES Act, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. It is charged with ensuring that a wide range of ideas and perspectives are considered and discussed in a public forum.

Did you know that the IACC is updating its strategic priorities and wants input from the autism community by July 29?
Learn more here.

Interested in presenting comments at the July meeting or sending written comments on an issue important to you? Send them to iaccpublicinquiries@mail.nih.gov. Deadline to request to present in-person comments is 5 pm ET July 5, with submission of an associated written statement by 5 pm July 11. Submission of written comments for distribution to IACC members is 5 pm July 11.

Autism Speaks will post the meeting agenda on its website when it becomes available – typically a week before the meeting. For more information, also visit the IACC Events page.

Pre-register to attend the July 19 meeting here.

Join remotely by live webcast or conference call here.

View past IACC meetings and their agenda’s here.

View Autism Speaks coverage of recent IACC meetings here. 

State mandates requiring commercial health plans to cover the cost of services for children with autism have resulted in more children being diagnosed and treated for the disorder, according to research published this week in the journal JAMA Pediatrics. Until recently, most health insurance plans did not cover the high costs associated with such care.

In addition, the researchers noted that the number of children diagnosed and receiving therapy for autism increased the longer a state mandate was in effect – from a 10 percent increase the first year to more than 18 percent after three years. However, the number of children diagnosed and receiving care remained far below the estimated prevalence of autism in the United States, the study found, suggesting that many families lack access to affordable autism services for their children.  

Autism Speaks issued a statement in response to these findings:

This study reinforces Autism Speaks’ long-standing position that autism insurance mandates are a critical tool to ensure every individual receives the evidence-based health care for autism they deserve. Autism Speaks is pleased the laws the community has worked so hard to get passed have increased the detection and treatment of autism. We have committed significant resources to enact, implement and enforce policies that ensure every autism family has access to the health care they need.

As noted by the study’s authors, barriers that impede access to care continue to exist, and regulatory issues remain. As we work with autism families around the country, we regularly see situations in which willing providers are unable to join networks; the credentialing process takes half-a-year to complete; reimbursement rates are set at unreasonably low levels; and discriminatory restrictions spring up regarding time and location of services, parental involvement, and more. We will continue our work with families and regulators to address these issues.

For more on this research, also see:
Study suggests insurance mandates help close gaps in autism care

Read about Dr. Mandell’s Autism Speaks-funded research
on the economics of autism here.

The federal Interagency Autism Coordinating Committee (IACC) has posted the full agenda (see below) the quarterly meeting on Tuesday, July 19, from 9 to 5 Eastern, at the National Institutes of Health, in Bethesda, Maryland.

Under the mandate of the Autism CARES Act, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. The law requires the committee to consider and discuss a wide range of ideas and perspectives in a public forum.

Register to attend in person here.

Join remotely by live webcast or conference call here.

For more information, also visit the IACC Events page, and check back for coverage of the meeting on autismspeaks.org.

Did you know that the IACC is updating its strategic priorities and wants input from the autism community by July 29?
Learn more here.

At this week’s quarterly meeting of the federal Interagency Autism Coordinating Committee (IACC), researchers presented new findings on improving support for college students and adults on the spectrum as well as advances in understanding and treating for autism-related anxiety, severe self-injury and other disabling behaviors. The meeting’s public comment period brought impassioned calls for more research on a broad range of concerns.

Under the mandate of the Autism CARES Act, the IACC coordinates all autism research and service activities within the US Department of Health and Human Services. It is charged with ensuring that a wide range of ideas and perspectives are considered and discussed in a public forum.

The meeting highlights below include links to related materials and written remarks. In addition, the IACC will post the archived webcast of the full-day meeting on its multimedia page in the coming days.

In opening the meeting, IACC chair Bruce Cuthbert introduced the committee’s newest member, Stuart Shapira. A pediatric geneticist, Dr. Shapira is chief medical officer for the National Center on Birth Defects and Developmental Disabilities at the Center for Disease Control and Prevention (CDC).

* Samantha Crane, of the Autistic Self Advocacy Network, reported on progress in states developing and implementing policies supporting adults with autism and other developmental disabilities. Ms. Crane directs public policy efforts for the Autistic Self Advocacy Network.

She noted that Tennessee is the first state to have met new Medicaid rules for providing effective, personalized services through its community-based programs. “Tennessee conducted extensive site assessments, communicated with broad array of stakeholders, partnered with other agencies like managed care organizations and created strong accountability guidelines,” she noted. As a result, its community services – including sheltered workshops – are required to provide each participant with a personalized plan, with an emphasis on training programs that promote skills, community integration and employment.

Ms. Crane also spoke encouragingly about the Transition to Independence Act now before Congress. If passed, it will provide funding to states that create innovative and effective programs to help people with disabilities achieve gain employment and integrate into their communities.

* Margaret Miller, of the Autism Society, said that her organization is developing meaningful milestones and indicators to judge the effectiveness of services that help people with autism transition to adulthood, with a special focus on gain meaningful employment and housing that maximizes independence and community integration.

* Pam Feliciano, of the Simons Foundation, described the organization’s newest research initiative – Simon’s Powering Autism Research for Knowledge (SPARK). (See “Simons launches nationwide program to accelerate autism research.”)

* Anne Roux, of the Drexel Autism Institute, described the institute’s new national-indicators report on vocational rehabilitation – noting that people with autism still have more difficulty finding employment than any other disability group. (See “Drexel Releases Report on Vocational Rehabilitation.”)

* Edlyn Peña, of California Lutheran University, described her research study on the supports needed for students with autism to successfully transition to college. Her study involved interviewing parents, as she wasn’t able to recruit enough students for the study. Of note, she found that the vast majority of parents were white, had family incomes of $90,000 or more, and had themselves attended college. “The findings suggest a pattern of inequitable access to college for students with autism,” she said. She called for greater efforts to engage and support parents and students from marginalized backgrounds to provide them with the resources they need to access and succeed in post-secondary education.

*Susan Daniels, director of the U.S. Office of Autism Research Coordination, announced that the IACC had finalized the working groups that will update the committee’s strategic plan, with an emphasis on diverse points of view. The working groups will be meeting via conference line by October, with all calls open to the public. Check the IACC website for schedules and details.

Dr. Daniels also noted that the strategic plan update remains open for public comment through the end of July. Learn more here.

* Julianna Rava, science policy analyst with the U.S. Office for Autism Research Policy, shared the latest breakdown of private and public funding across the seven areas of the IACC strategic plan. See graphic below. (Note: Throughout the meeting, committee members and presenters echoed the need to fund more research focused on supporting people with autism across the lifespan.)

Public Comment Period

The meeting’s regularly scheduled public comment period allowed brief presentations of three minutes each.

Read the full written text of all public-comment presentations here.

Several parents urged more research investigating vaccination and hypoxia (oxygen deprivation) as contributing to autism. Other parents urged improved autism training for general education teachers and greater support for biomedical interventions. A music therapist urged expanded recognition of the benefits of music therapy for improving socialization, language and learning among children with autism. An early intervention provider who was also the parent of a child with autism described the dramatic social and behavioral improvements seen after she and other parents removed all electronic media from their homes. A representative of Madison House Autism Association called for greater research and support for adults who have autism.

Panel on challenging behaviors
An afternoon panel featured overviews of research on better understanding and addressing severe behavioral challenges associated with autism. (See references and materials for this panel below.)

* Denis Sukhodolsky, of Yale Child Study Center, described advances in addressing severe anxiety and irritability in children and adolescents with autism. Cognitive behavioral therapy, in particular, is helping many people whose autism is complicated by severe anxiety, he said. The approach involves highly structured methods for exposing people to their fears in ways that feel safe. While generally effective, the method does not work for all children or adults who have autism. He emphasized the importance of developing new, effective approaches to help these people with their debilitating fears.

In children and adults with autism, severe irritability – including tantrums, aggression and self-injury – often results from interrupting restricted interests and the inability to communicate. He described success with individualized therapy that seeks to understand the underlying frustrations and negotiate compromises.

He expressed hope that new early interventions can prevent the development of severe irritability – which tends to worsen with age and become particularly problematic in adolescence and adulthood.

* James Bodfish, of Vanderbilt University School of Medicine, described his team’s research developing family-based early interventions to reduce or prevent the development of severely restricted interests and behaviors that interfere with quality of life. Dr. Bodfish noted that this work included the research of Autism Speaks Weatherstone Fellow Kathryn Unruh, who is investigating nonsocial interests and motivations in toddlers affected by autism with the goal of tapping these interests to improve social learning and development.

* Frank Symons, of the University of Minnesota, described his research into severe self-injury associated with developmental disorders, including autism. Parents are understandably desperate for help, he noted. But after three decades of research, we still have little understanding of what drives the behaviors and whether or not they involve increased or decreased pain perception. His current research focuses on identifying red flags that a young child is predisposed to self-injury, which tends to worsen with age. Such warning signs could signal an opportunity to intervene in ways that prevent or decrease such behaviors. At present, little is known on how to accomplish this.

The next full meeting of the IACC is scheduled for October 26.  

The IACC will post the archived webcast of the July 19 meeting on its multimedia page in the coming days.

Did you know that the IACC is updating its strategic priorities and wants input from the autism community by July 29?
Learn more here.

Additional reporting by Autism Speaks advocacy interns Jaime Travers-Fein and Maxamillia Moroni. 

Materials related to panel on challenging behavior

Anderson, C. New Research on Children with ASD and Aggression  (Internet) Interactive Autism Network. Feb. 2012

Boyd BA, McDonough SG, Bodfish JW. Evidence-based behavioral interventions for repetitive behaviors in autism  J Autism Dev Disord. 2012 Jun;42(6):1236-48.

Duerden EG, Oatley HK, Mak-Fan KM, McGrath PA, Taylor MJ, Szatmari P, Roberts SW. Risk factors associated with self-injurious behaviors in children and adolescents with autism spectrum disorders  J Autism Dev Disord. 2012 Nov;42(11):2460-70.

Fitzpatrick SE, Srivorakiat L, Wink LK, Pedapati EV, Erickson CA. Aggression in autism spectrum disorder: presentation and treatment options.  Neuropsychiatr Dis Treat. 2016 Jun 23;12:1525-38.

Fung LK, Mahajan R, Nozzolillo A, Bernal P, Krasner A, Jo B, Coury D, Whitaker A, Veenstra-Vanderweele J, Hardan AY. Pharmacologic Treatment of Severe Irritability and Problem Behaviors in Autism: A Systematic Review and Meta-analysis.  Pediatrics. 2016 Feb;137 Suppl 2:S124-35.

McGuire K, Fung LK, Hagopian L, Vasa RA, Mahajan R, Bernal P, Silberman AE, Wolfe A, Coury DL, Hardan AY, Veenstra-VanderWeele J, Whitaker AH.Irritability and Problem Behavior in Autism Spectrum Disorder: A Practice Pathway for Pediatric Primary Care.   • Pediatrics. 2016 Feb;137 Suppl 2:S136-48. doi: 10.1542/peds.2015-2851L. Epub 2016 Feb 1.

Minshawi NF, Hurwitz S, Fodstad JC, Biebl S, Morriss DH, McDougle CJ. The association between self-injurious behaviors and autism spectrum disorders.  Psychol Res Behav Manag. 2014 Apr 12;7:125-36.

Moskowitz, L. Assessing and Treating Challenging Behavior in Individuals with ASD   Tantrumming and Aggression. Autism Research Institute, n.d.

Richards C, Moss J, Nelson L, Oliver C. Persistence of self-injurious behaviour in autism spectrum disorder over 3 years: a prospective cohort study of risk markers.  J Neurodev Disord. 2016 May 5;8:21.

Sukhodolsky DG, Smith SD, McCauley SA, Ibrahim K, Piasecka JB. Behavioral Interventions for Anger, Irritability, and Aggression in Children and Adolescents.  J Child Adolesc Psychopharmacol. 2016 Feb;26(1):58-64.

Sukhodolsky DG, Vander Wyk BC, Eilbott JA, McCauley SA, Ibrahim K, Crowley MJ, Pelphrey KA. Neural Mechanisms of Cognitive-Behavioral Therapy for Aggression in Children and Adolescents: Design of a Randomized Controlled Trial Within the National Institute for Mental Health Research Domain Criteria Construct of Frustrative Non-Reward  J Child Adolesc Psychopharmacol. 2016 Feb;26(1):38-48.

Sukhodolsky DG, Bloch MH, Panza KE, Reichow B. Cognitive-behavioral therapy for anxiety in children with high-functioning autism: a meta-analysis.   Pediatrics. 2013 Nov;132(5):e1341-50.

Symons FJ, Gilles E, Tervo R, Wendelschafer-Crabb G, Panoutsopoulou I, Kennedy W. Skin a and self-injury: a possible link between peripheral innervation and immune function?  Dev Med Child Neurol. 2014 Sep 4.

Symons FJ, Tervo RC, Barney CC, Damerow J, Selim M, McAdams B, Foster S, WendelschaferCrabb G, Kennedy W. Peripheral Innervation in Children With Global Developmental Delay: Biomarker for Risk for Self-Injurious Behavior?  J Child Neurol. 2015 Nov;30(13):1722-7.

Wolff JJ, Bodfish JW, Hazlett HC, Lightbody AA, Reiss AL, Piven J. Evidence of a distinct behavioral phenotype in young boys with fragile X syndrome and autism.  J Am Acad Child Adolesc Psychiatry. 2012 Dec;51(12):1324-32.

Wolff JJ, Clary J, Harper VN, Bodfish JW, Symons FJ. Evidence for reciprocal interaction effects among adults with self-injury and their caregivers.  Am J Intellect Dev Disabil. 2012 May;117(3):225-32.

Challenging Behaviors Tool Kit.  Autism Speaks: Family Services. Challenging Behavior Toolkit, 2012

Did you know that most primary care doctors receive less than a month’s training in developmental disorders such as autism?

The Autism Speaks Autism Treatment Network (ATN) is evaluating a solution, as part of its federally funded role as the nation’s Autism Intervention Network for Physical Health (AIR-P). ECHO Autism is a live, web-based training and consultation program developed and pilot-tested at the Thompson Center for Autism and Developmental Disabilities (Columbia, Missouri) – one of 14 ATN sites across the U.S. and Canada. The program is now being rolled out at 10 ATN sites across the United States.

On August 3 at 3:30 pm (Eastern), the Autism Science Foundation is hosting a live webchat with Thompson developmental pediatrician Kristin Sohl, whose team developed and evaluated ECHO Autism. Dr. Sohl welcomes questions on how the program can help improve autism-related healthcare in communities that lack autism specialists.

Register to join the Aug. 3 webchat here.

Also see “Your ATN@Work: Distance training improves autism care, shortens diagnosis time