A new report shows that a three-fold increase in autism among special education students between 2000 and 2010 is partly offset by a decrease in diagnoses for intellectual disability.

The report, by researchers at Penn State University, appears in the American Journal of Medical Genetics. The researchers analyzed eleven years of U.S. special-education enrollment information on around 6 million children per year.

Intellectual disability is generally defined as involving an IQ below 70. It often co-occurs with autism and other developmental disabilities and can “mask” them in the absence of a skilled evaluation.

Increased awareness of autism has helped increase recognition and diagnosis of the disorder – with or without intellectual disability, experts agree.

“For years, we’ve known that a proportion of the increase in autism prevalence is attributable to increased awareness of autism and changes in diagnostic criteria,” comments epidemiologist Michael Rosanoff, Autism Speaks director of public health research.

“However, these factors alone don’t account for the entire increase in autism prevalence reported over the past two decades,” Rosanoff says. “It’s vitally important that we conduct research that teases out the effects of diagnostic changes on changes in autism prevalence over time to understand the factors that are truly causing a rise in autism.”

The Penn State researchers used data from the United States Individuals with Disabilities Education Act (IDEA) for students enrolled in special-education programs. Under IDEA, individuals are classified into one of thirteen disability categories including autism spectrum disorders, intellectual disability and other learning disabilities.

Although many of these categories can co-occur, children can be classified under only one category.

“Because this sample included only children enrolled in special education, it represents only a portion of the autism population,” Rosanoff adds. “Many less severely affected students wouldn’t be enrolled in these programs and thus not included in this analysis.” 

In this week’s podcast by the Autism Science Foundation, ASF Chief Science Officer Alycia Halladay and neuroscientist Dan Smith, Autism Speaks’ vice president for innovative technologies, discuss two remarkable new advances in the study of the autistic brain.

The first advance involves the creation of brain organoids, or “mini-brains” grown from skin cells using stem cell technology.

“That’s cool,” says Dr. Halladay. “But let’s not forget that scientists also need to study the actual (postmortem) brains of people with autism.”

In the second half of the podcast, Drs. Halladay and Smith discuss the importance of such a study recently published in the journal Nature Neuroscience. It found altered levels of “gene enhancers” in donated postmortem brain tissue from individuals who had autism.

Both of these studies represent great advances in the type of basic research needed to make personalized medicines a reality for people severely affected by autism, Dr. Smith says.

Listen to the full podcast here.

To learn more about post-mortem brain donation to advance autism research, visit Autism BrainNet, an initiative supported by Autism Speaks and the Simon Foundation Autism Research Initiative.

A pair of new studies suggests that state vocational services for people with disabilities are doing a poor job of helping young people with autism prepare for and get jobs.

Both studies appear in the Journal of Autism and Developmental Disorders.

By federal mandate, all states have vocational rehabilitation services that provide a variety of employment-related services to people with disabilities, including autism. These can include vocational training, counseling, job placement and supported employment.

“The problem is, they generally aren’t very effective for people with autism,” comments David Kearon, director of adult services for Autism Speaks. “These new studies highlight some of the most critical barriers facing teens and young adults with autism today.” Autism Speaks was not directly involved in the research.  

In their first study, Connie Sung and colleagues at Michigan State University looked at employment outcomes for 5,681 people with autism who were using their state’s vocational rehabilitation services.

Transition-age youth (up to age 18) represented the largest subgroup in this study. Less than half (47 percent) secured employment – full- or part-time – after receiving services. The employment rate increased modestly to 55 percent for those ages 19 to 25 and to 61 percent for those 26 and older.

With some 50,000 people with autism entering adulthood each year in the United States, such low employment rates represent a huge and growing problem, the researchers argue. Young people with autism who don't find work, Dr. Sung says, are at particular risk for becoming house-bound and developing mental health issues such as low self-esteem and depression.

The report highlights a general lack of autism-specific supports in vocational rehabilitation services across the United States. In particular, the authors call for greater use of visual aids (people with autism tend to be visual learners) and greater emphasis on teaching appropriate social skills for work situations.

Gender differences
The second study, by the same team, looked at gender differences in the vocational training needs of teenagers and young adults who have autism. The researchers found that mental health issues pose a particularly strong barrier to employment for young men with autism. Having either anxiety or depression almost halved the odds of their finding jobs.

Anxiety and depression are common among people who have autism – regardless of gender. But these issues appear to pose less of a barrier to employment among young women, the study concludes. It may be that anxiety and depression are less obvious in girls and women with autism – at least in the workplace, the authors conclude.

The report calls for increased emphasis on job counseling that focuses on mental health, interpersonal skills and appropriate behaviors – particularly for young men with autism.

The researchers also emphasized the importance of doing more to help young people with autism secure internships or part-time jobs while still in high school – when they have support from special-education services.

“Placement in a community-based internships or work experience must be made a priority for transition planning during high school,” Kearon agrees. “The disconnect between the educational and vocational-rehabilitation service systems – as well as inadequate funding and autism-specific expertise – are fundamental parts of the problem.”

Autism Speaks is committed to providing resources and supports to increase employment opportunities for teens and adults with autism. Earlier this year, Autism Speaks launched TheSpectrumCareers.com, a jobs portal for individuals with autism. The portal was designed to promote inclusive employment of the autism community by connecting employers, service providers and employees on the spectrum.

The Autism Speaks Employment Tool Kit provides young adults and adults with autism with tips and tools to help them research, find and keep employment in the current competitive labor market.

Additional employment tools include An Employer's Guide to Hiring and Retaining Employees with Autism Spectrum Disorders, A Parent's Guide to Employment for Adults with Autism Spectrum Disorders and an Autism in Big Business Report.

A new study pegs autism’s economic costs for 2015 at an estimated $268 billion in the United States. The study, funded in part by Autism Speaks, projects costs rising to $461 billion in 2025 if autism’s prevalence remains flat at today’s rates. By contrast, if autism’s prevalence continues the steep rise seen over the last decade, the projected costs will top $1 trillion by 2025.

For perspective, the estimated 2015 costs of autism are on a par with estimates for diabetes and attention deficit and hyperactivity disorder (ADHD) and exceed those for stroke and hypertension.

“But if the prevalence of autism spectrum disorder continues to grow as it has in recent years, ASD costs will likely far exceed those of diabetes and ADHD by 2025,” says study co-author Paul Leigh, a health economist at the University of Davis Center for Healthcare Policy and Research.

The report appears in the Journal of Autism and Developmental Disorders.

“We know we can reduce the economic burden and, more importantly, improve lives by enhancing early detection and access to early intervention and by facilitating employment opportunities for the growing adult population with autism,” comments epidemiologist Michael Rosanoff, Autism Speaks director for public health research. “Services are expensive and missed opportunities for income earning among individuals with autism and their caregivers compound the issue.”

In 2011, Autism Speaks awarded Dr. Leigh’s a research grant to develop clear and reliable methods to update autism’s economic costs to society on an annual basis. Such information is crucial when advocating for support services that reduce overall costs to society while improving daily function and quality of life.

In his work, Dr. Leigh included analysis of both direct and indirect costs.

Direct costs include special education, adult care programs, physician and therapist visits, hospitalizations, medications and paid caregivers.

Indirect costs include lost productivity – particularly in terms of wages and benefits – for both those who have autism and their family caregivers.

Information for the analysis came from the Centers of Disease Control and Prevention, the Bureau of Labor Statistics and published research estimates of per-person costs.

“Public, research and government policy attention to autism ought to be at least as great as it is for other major health conditions such as diabetes,” concludes Dr. Leigh.

Dr. Leigh’s co-author on the paper was economist Juan Du, of the Old Dominion University’s Strome College of Business, in Norfolk, Virginia.

Also see:

Lifetime Costs of Autism Average $1.4 Million to $2.4 Million

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

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

A new study adds a twist to the pronounced ways that autism affects girls and boys differently. While boys are four times more likely to develop autism, when girls do, they’re more likely to also have seizures that don’t respond to epilepsy medications. Epilepsy, which affects up to a third of all people with autism, involves recurrent seizures that may or may not be obvious to observers.  

The findings appear online in the journal Autism Research.

“While many researchers have looked at differences between boys and girls with autism, this study is the first to focus so closely on differences in a medical condition that commonly occurs with autism,” comments developmental pediatrician Paul Wang, Autism Speaks head of medical research. “The findings underscore the importance of thoroughly evaluating for epilepsy whenever a child with autism shows behaviors that might indicate seizures.” These tip-off signs often include unexplained staring, lack of responsiveness and even repetitive motions – all behaviors that are frequently dismissed as part of a child’s autism. (Dr. Wang was not involved in the study.)

The new research, led by neuroscientist Karen Blackmon, of New York University Medical Center, investigated a previously noted difference between autism’s 4-to-1 male/female ratio and the tighter 3-to-1 male/female ratio for autism with epilepsy.

“This suggests that whatever protects women from autism does not shield them from epilepsy,” Dr. Blackmon says.

To investigate further, her team looked at differences in autism symptoms and seizure frequency and severity in a group of 130 children and young adults initially diagnosed with autism and subsequently diagnosed with epilepsy.

Overall, they found that the girls and young women had milder autism symptoms than did the boys and young men. But just the opposite was true in terms of their epilepsy. The females – even those with relatively mild autism symptoms – were more likely to have epilepsy that didn’t respond to the medicines typically used to prevent seizures.

Nearly half of these girls and women had failed to respond to at least two commonly used epilepsy drugs. By contrast, this was true of just a quarter of the boys and men in the study.

The researchers urged greater attention to girls and women with autism and epilepsy. In particular, they recommended that specialists use a full battery of genetic and brain imaging tests in addition to the electroencephalogram (EEG) testing traditionally used to identify epilepsy. This information may provide important information for better characterizing and managing seizures in girls and women with autism, they write.

In addition, doctors should be prepared to try multiple medications to find one that works well.

“All children with autism should be thoroughly evaluated for possible medical co-morbidities including epilepsy,” Dr. Wang concludes. “And future research on the causes and treatment of autism need to take these co-morbidities into account.”

Also see these related resources

Having an Electroencephalogram (EEG): A Guide for Parents

Having an Electroencephalogram (EEG): A Guide for Providers

Autism and Epilepsy Resources

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

The Patient-Centered Outcomes Research Institute has awarded the Interactive Autism Network (IAN) $1.6 million to become the newest member of its national research database. The grant will enhance this national database with a wealth of autism-related information contributed by some 50,000 people affected by autism.

The award also supports a new partnership between IAN and the Autism Speaks Autism Treatment Network, through the ATN’s site at Cincinnati Children's Hospital.

Founded in 2006 by Baltimore’s Kennedy Krieger Institute, IAN is a family-centered research network that uses an online platform to collect information from some 50,000 individuals and families affected by autism. Autism Speaks is a founding supporter of IAN and continues to work closely with the network’s leadership. Earlier this year, the Simons Foundation Autism Research Initiative assumed IAN’s financial support.

“This new project will build an important new bridge between the remotely collected information from IAN's online community and the clinical information collected from families participating in research at our ATN center in Cincinnati,” says Paul Wang, Autism Speaks’ head of medical research. “We anticipate that this connection will speed urgently needed patient-centered research and the sharing of research results with clinics and families nationwide.”

The grant makes IAN the newest partner in the Patient Centered Outcomes Research Network, alongside 33 other health data networks. Taking advantage of the large network, IAN plans an outreach campaign to recruit more minority families and adults affected by autism into its online community. As always, the goal is for these individuals and families to participate in studies and help guide the future direction of autism research.

Through its role in the new partnership, the Autism Speaks ATN center at Cincinnati Children’s Hospital will enhance the engagement of its patients in autism research. It will also explore new ways to provide families, researchers and healthcare providers with the best evidence-based information about autism.

Cincinnati Children’s is one of 14 sites in the Autism Speaks ATN. The Cincinnati ATN is led by developmental pediatrician Patty Manning.

Learn more about the Autism Speaks Autism Treatment Network here.

"We're thrilled to receive this award,” says IAN Director Paul Lipkin, “not only because of the opportunities it offers to the advancement of autism research, but also because it is an acknowledgement of our historic experience and success as one of the first patient powered research networks. Most importantly, this award recognizes autism as the major public health concern that it is, due to its high prevalence and significant medical, economic and social burdens."

The American Academy of Pediatrics has joined autism advocacy groups in urging continued universal screening for autism at 18 and 24 months, in response to a call, by the US Preventive Services Task Force, for more research on its benefits.

“The AAP remains committed to its recommendation for the timely screening and identification of children who would benefit from early intervention and treatment,” the academy says in its statement. “Autism spectrum disorder (ASD) has a tremendous impact on families, affecting an estimated 1 in 68 children in the U.S. Because early identification and referral for appropriate intervention are critical to ensuring that  children with autism have access to effective therapies, the American Academy of Pediatrics recommends all children be screened for ASD at ages 18 and 24 months, along with regular developmental surveillance.”

The Preventive Services Task Force reviews the scientific evidence behind recommendations for a broad variety of healthcare screening tests, from routine blood work to mammograms. It based its statement on a review of published research into the effectiveness of universal early screening for autism and the benefits of early intervention.

The review found:

* Significant support for the effectiveness of early screening for autism. This screening can be done in a few minutes during a toddler’s well-child checkup.  

* Significant evidence of the benefits of high-quality early intervention programs for toddlers and preschoolers with autism.

Nonetheless, the task force noted a lack of studies that looked at the combination of universal early screening and early intervention services. To date, early-intervention studies have not included children who were screened for autism in the absence of a specific concern. Instead they have focused on children diagnosed with autism after concerns about developmental delays or other “red flag” behaviors, or because they were in a high-risk group. The latter includes the younger siblings of children diagnosed with autism. These “baby sibs” are considered at high risk because autism tends to run in families.

As a result of this gap in research, the task force stated that, at present, evidence was “inconclusive” on the benefits of universal screening for autism at 18 and 24 months. In its statement, the task force made clear that it was notrecommending against universal screening, but only calling for more research.

Zachary Warren, a clinical psychologist and autism researcher at Vanderbilt University Medical Center, was one of the experts who wrote the scientific review on which the task force based its statement. He voiced strong concerns over the conclusion of the task force and how it would be interpreted.

“It appears that the [task force] used a very rigid approach in evaluating the evidence for screening,” he says. “It is my personal opinion that failing to screen for ASD is a practice that lacks both clinical perspective and common sense. It would be tragic if clinicians limit their use of screening tools for ASD in clinical practice based on this statement.”   

In a jointly issued statement, Autism Speaks and the Autism Science Foundation write:

The ambiguity of the statement offered by the US Preventative Services Task Force on autism screening is troubling and may be easily misinterpreted. … Screening leads to earlier identification of autism and opportunities for early intervention, which improves the lives of children with the disorder.”

Read the full statement of the American Academy of Pediatrics here.

Read the full statement from Autism Speaks and the Autism Science Foundation here.

On August 6th, Chiara Servili, a member of the World Health Organization (WHO) team on child and adolescent mental health in the Department of Mental Health and Substance Abuse, and Andy Shih, Autism Speaks’ senior vice president for scientific affairs, will provide practical advice on how to better respond to the mental health needs of children and their families through a health systems approach. 

Join Us

The 45-minute webinar will take place on Thursday, August 6, at 10 am ET. Please email MHIN@lshtm.ac.uk with your name, country of residence and affiliated organization to register.

Have a Question?

If you have a question you would like answered during the webinar, submit it before the session by emailing us at MHIN@lshtm.ac.uk or by tweeting them to @MHInnovation.

About the Guests

Chiara Servili is the focal point for child and adolescent mental health in the Department of Mental Health and Substance Abuse at the World Health Organization's headquarters office, based in Geneva, Switzerland. 

Prior to joining the Department of Mental Health and Substance Abuse in 2010, she worked in WHO's Department of Child and Adolescent Health and Development and served the organization in the African and Eastern Mediterranean regions.

Andy Shih, Autism Speaks’ senior vice president for scientific affairs works closely with members of Autism Speaks’ Board, Scientific Advisory Committee, senior staff and volunteer leadership to develop and implement the organization’s research program. He oversees the public health portfolio, which includes Autism Speaks' Global Autism Public Health Initiative, an international advocacy and development effort currently active in over 60 countries that integrates awareness, research and service development. Andy and his team serve as technical advisor to ministries and other government agencies by facilitating multi-stakeholder collaboration and sourcing needed content expertise and other technical resources with the goal of delivering community-based feasible, cost-effective and sustainable solutions.

For more information, click here.

University of North Carolina researchers have worked out how changes to a specific autism-related gene cause a severely disabling form of autism – with clear implications for treatment.

Their findings appear today in the journal Cell.

Autism Speaks helped support the work with a research grant. Additional funding came from the National Institutes of Health, the Angelman Syndrome Foundation and the Foundation for Angelman Syndrome Therapeutics.

In today’s report, brain biologist Mark Zylka and colleagues show that a specific autism-linked gene change interferes with an important enzyme, or chemical “switch,” in the brain. This enzyme, dubbed UBE3A, switches off and on with the addition and removal of a phosphate molecule. Precise control of its activity is crucial for healthy brain development and normal brain function.

The gene mutation destroys the ability of the phosphate molecule to turn off the switch. As a result, UBE3A becomes hyperactive and drives abnormal brain development and autism. The work was done in human cell lines, as well as mouse models.

A new direction for treatment
Importantly, the researchers also identified the protein that tacks the phosphate group onto UBE3A. It’s protein kinase A, or PKA. The finding has treatment implications because a number of existing drugs can raise or lower PKA levels in the body.

Such medicines may hold particular promise for treating Dup15q syndrome. The disorder involves duplication of chromosome 15 and affects around 5 percent of people who have autism. It’s also commonly associated with severe physical and intellectual disabilities and seizures.

“We think it may be possible to tamp down UBE3A in Dup15q patients to restore normal levels of enzyme activity in the brain,” Dr. Zylka says. “In fact, we tested known compounds and showed that two of them substantially reduced UBE3A activity in neurons.”

One of the drugs, rolipram, had been previously tested to treat depression but was discontinued due to side effects. The researchers propose that it may be worthwhile to try lower doses in light of the fact that Dup15q is also associated with life-threatening seizures. “The benefits might outweigh the risks,” Dr. Zylka says.

First the team plans to test this approach with mice genetically engineered to have the Dup15q gene mutation.

In addition, the team identified other gene mutations that disrupt the brain’s UBE3A switch in Angelman syndrome, which likewise involves a severely debilitating form of autism. The Angelman’s mutations essentially eliminate UBE3A. This raises the possibility of future treatments that increase or restore the enzyme.

“The identification of genetically defined subpopulations is an important first step in developing targeted and effective new therapies,” comments geneticist Mathew Pletcher, Autism Speaks vice president for genomic discovery. 

This type of result – using genetic discoveries to advance research on personalized treatments – is the goal of Autism Speaks MSSNG program. MSSNG is harnessing the information in 10,000 whole genome sequences from families affected by autism to provide meaningful information for researchers, healthcare providers and people with autism.

MSSNG: “What we know about autism is not enough; MSSNG is the search for the answers.”

The U.S. Department of Health and Human Services has awarded Florida’s Nova Southeastern University’s College of Dental Medicine a $3.4 million grant to train dentists on the special sensitivities and strategies needed to care for the growing population of children and teens affected by autism.

The curriculum aims to increase access to dental care for children with autism, many of whom have great difficulty tolerating dental procedures. It will also train pediatric dentists on how to help these patients transition to adult dental care.

“Nova Southeastern University is committed to researching and implementing new techniques to help patients with special needs,” says Romer Ocanto, chair of the college’s department of pediatric dentistry. “We are excited about this opportunity to make a difference in the lives of so many people. This funding will allow us to partner with community organizations and general dentists in Florida and throughout the southeastern U.S. to enhance dental services available to patients with autism.”

The program may also serve as a model for similar curricula at colleges of dental medicine across the U.S.

For more information on autism and dentistry, also see the following Autism Speaks ATN/AIR-P tool kits for families and dental professionals. Follow the links to download them free of charge.

Autism Speaks ATN/AIR-P Dental Professionals' Tool Kit

Autism Speaks Family Services Dental Tool Kit

Also see:

“Is It Safe to Sedate our Son during his Dental Appointment?”

"Your ATN@Work: A Trip to the Dentist Can Be a Positive Experience."

A new test may be one of the first effective self-assessments for a core symptom of autism in adults.

As described in the Journal of Autism and Developmental Disorders, the Adult Repetitive Behavior Questionnaire (RBQ-2) measures the extent to which adults are affected by repetitive and restricted behaviors. Restricted and repetitive behaviors make up one of the core symptoms of autism, alongside social and communication challenges.

"Many measures used for research and diagnoses of autism rely on parents, teachers or caregivers to report the behaviors of individuals with the condition," says study leader Sue Leekam, director of the Wales Autism Research Centre, at Cardiff University in the United Kingdom. "What our research has done is develop a test where individuals can report on their own behaviors.”

The challenge of adult diagnosis
Psychologists diagnose autism through direct observation and questionnaires that record the observations of parents and other caregivers. But the behavioral checklists they use are designed for assessing children, not adults – who often become adept at hiding their symptoms. In addition, parents of adults are frequently deceased or distant and, so, not available to fill out questionnaires about early childhood behaviors.

As a result, it’s difficult to find psychologists who feel qualified to evaluate adults for autism, and those who do tend to use their own untested methods.

Assessing repetitive and restricted behaviors
Repetitive and restricted behaviors include such habits and routines as lining up objects or arranging them in patterns, fiddling obsessively with objects or insisting that aspects of a daily routine remain exactly the same. The RBQ-2 test is designed to indicate when such behaviors are unusually frequent or severe.

To determine the test’s reliability, autism experts at Cardiff University and La Trobe University, in Melbourne, asked 311 British and Australian adults to complete the test. Around half had already been diagnosed with autism. The other half were not.

Though some adults without autism showed a high tendency for repetitive behaviors, those with an autism diagnosis scored significantly higher on the test.

Repetitive behaviors just one aspect
By itself, the test cannot diagnose autism. Repetitive and restricted behaviors are just one core symptom of autism – alongside social and communication challenges and, often, sensory issues. Repetitive behaviors are also associated with other conditions including obsessive-compulsive disorder, Parkinson's disease and Tourette syndrome.

Nonetheless, the new test represents an important advance, many experts agree.

“This new self-report measure is a great addition for adult health care, not just autism,” comments Kara Reagon, Autism Speaks associate director for dissemination science. “Adults wondering if they exhibit excessive restricted or repetitive behaviors now have a tool to help them determine if they do and then get help.”

“Too often people don’t realize that help is available for these types of behaviors,” Dr. Reagon adds. “Hopefully, by understanding their behavior and seeking help they will live happier, fuller lives.”

The investigators are now evaluating RBQ2 with more adults across the lifespan. If you’re 18 and older with a diagnosis of autism spectrum disorder (ASD), you are invited to participate by completing the test online here.

Also see: Getting Evaluated for Autism as an Adult: Where to Go? Who to See?

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

A social skills program for young adults with autism provides lasting benefits that include a steady growth in social connections, according to a new study in the Journal of Autism and Developmental Disorders.

The study – the largest controlled trial to track the effectiveness of such a program – evaluated a young adult version of the Program for the Education and Enrichment of Relational Skills, or PEERS. Previous research had demonstrated the effectiveness of PEERS programs for preschoolers and for adolescents. All three courses consist of 16 weekly, 90-minute sessions, with concurrent sessions for caregivers.

The study enrolled 22 participants, ages 18 to 24. All had autism without intellectual disability and significant difficulties in social situations. All had also expressed interest in taking the course.

During the study, half the participants completed the PEERS course, while the half were placed on a wait list. As part of the course, the participant’s parents or other caregivers received training on how to coach the participants outside of class.

Conversation, humor and more
The group classes focused on conversational skills, appropriate use of humor and electronic communication, identifying sources of friends, entering and exiting conversations, organizing successful get-togethers and handling peer conflict and peer rejection. The course also included four sessions on dating etiquette.

During each class, trainers went over specific rules and steps of social behavior. They taught through lessons, role-play, rehearsal exercises and assignments to practice the skills in social settings outside of class.

“We’re not teaching what we think young people should do in social situations, but what we know actually works through research,” says senior researcher Elizabeth Laugeson. Dr. Laugeson is the founder and director of the PEERS Clinic at the University of California, Los Angeles.

For example, young people with autism are often advised to walk up and introduce themselves to others – a strategy that can come across as awkward.

Breaking skills into steps
“Most of us watch and listen to the conversation and figure out what [other people] are talking about,” Dr. Laugeson explains. “We do this by eavesdropping. But we don’t want to look like we’re eavesdropping…. The next step is to wait for a brief pause in the conversation and move closer. The final step is to join the conversation by saying something on topic.”

The PEERS training breaks down social skills in this stepwise manner.

Benefits
The researchers evaluated the participants at the end of the 16-week course. Those who completed the classes had significantly greater improvements in social skills and frequency of social engagement, compared to the comparison group on the wait list. In addition, those who took the class had a significant decrease in autism symptoms related to social responsiveness.

Lasting gains and further improvement
The participants returned four months after the training ended for another evaluation. Those who had completed the course still showed significant gains in social skills and engagement.

What’s more, the researchers observed new improvements in social communication, assertion, responsibility and empathy. This may be due to continued coaching by the caregivers who participated in the study, the researchers propose.

“Our study offers encouraging findings that, through an evidence-based, caregiver-supported intervention, adults with autism can improve in ways that may help them be more successful in these aspects of their lives,” Dr. Laugeson says.

Although most people with autism struggle with social difficulties, few social skills interventions exist for young adults on the spectrum.

“It’s exciting to see a community-based treatment model using caregiver support to help improve social skills,” comments Kara Reagon, Autism Speaks associate director of dissemination science. “The results show adults can continue to learn complex social skills such as making and maintaining friendships, and managing conflict and rejection. More research on skill acquisition for social skills for with this age group is desperately needed.”

The researchers plan to publish a PEERS manual for young adults later this year. The PEERS Clinic already offers similar manuals for coaching adolescents and younger children.

PEERS trainings are available nationwide and in a dozen countries. Learn more about these trainings and resources at the PEERS Clinic website here.

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

Autism families and researchers are invited to participate in a free webinar – “The Early Diagnosis Roadmap: From Detection to Intervention” – on Thursday, August 20th, at 2 pm Eastern.

The presenter will be pediatric neuropsychiatrist Juhi Pandey, of the Children’s Hospital of Philadelphia, on behalf of the Infant Brain Imaging Study (IBIS).

An Autism Speaks research grant helps support IBIS and the related Early Autism Risk Longitudinal Investigation (EARLI) study. The Children’s Hospital of Philadelphia is one of 14 centers in the Autism Speaks Autism Treatment Network.

Register for the free webinar here.

Dr. Pandey will describe how early identification of autism spectrum disorder (ASD) is critical for maximizing the long-term health and well-being of affected children and their families through intensive early intervention.

Dr. Pandey will also discuss the screening tools that the American Academy of Pediatrics has recommended for use as part of all children’s well-child checkups at 18 months and 24 months. In particular, she will discuss the Modified Checklist for Autism in Toddlers (M-CHAT).

Editor’s note: An interactive, self-scoring version of the M-CHAT is available to use free of charge on the Autism Speaks website here.

The webinar will also describe the comprehensive assessment of young children identified as having autism or being at high risk of developing the condition. Identification is only the first step in this process, Dr. Pandey says. A comprehensive evaluation is vital to understand a young child’s strengths and weaknesses and to guide intervention services. She will also discuss the identification of developmental and medical conditions that frequently co-occur with autism.

Finally, Dr. Pandey will present research findings that further support the importance of early screening and intervention in very young children with autism. The discussion is particularly timely, coming on the heels of a controversial draft statement by the US Preventive Services Task Force questioning whether there is sufficient evidence behind the American Academy of Pediatrics recommendations for universal early screening for autism. (To learn more, please see “Pediatricians join autism advocates to urge universal early screening.”)

Read more about IBIS and Autism Speaks’ support of its groundbreaking research here.

Register for this week’s free webinar here.

This week’s Wired magazine shines a spotlight on the dazzling DNA crystal images that photographer/biochemist Linden Gledhill created for Autism Speaks’ MSSNG project.

MSSNG is sequencing the whole genomes of 10,000 participants in families affected by autism and making this unprecedented wealth of anonymous data freely available for research through the Google Cloud platform.

For the Autism Speaks community, Dr. Gledhill’s images have come to symbolize the unique beauty within every individual affected by autism.

Read the full Wired article, including Dr. Gledhill’s time-lapse videos of DNA crystallization here.

Learn more about MSSNG here. Learn more about MSSNG and crystallized DNA in the video below featuring Dr. Gledhill.

The National Institutes of Health is refunding and reviving research that aims to identify environmental risk factors for autism and other childhood disorders, reports SFARI.org.

The Environmental Influences on Child Health Outcomes project will invest $165 million to expand and integrate existing environmental studies by investigators who are already interviewing and collecting biological samples from pregnant women, new mothers and young children.

ECHO replaces the National Children’s Study, which launched in 2000 as the largest ever long-term study of pregnant women and their children in the US. That study’s goal was to follow 100,000 children from before birth to age 21, with investigators interviewing mothers and collecting blood and household environmental samples such as dust. The NIH halted the admittedly ill-managed project last December after cost overruns surpassed $1 billion.

Piggybacking onto existing studies is a faster, more affordable strategy than the one the National Children’s Study took, experts agree. But extracting meaningful data from a mishmash of studies won’t be easy, autism researcher Irva Hertz-Picciotto tells SFARI.

Read the full story at SFARI.org here.

Editor’s note: Autism Speaks continues to fund a broad range of research into environmental risk factors for autism and their relationship to genetic predispositions for the condition. You can explore these research grants – and all the research that Autism Speaks is funding – using this website’s grant search engine here. This work is made possible by the passion and generosity of Autism Speaks’ volunteers, families and donors.  

ALSO SEE:

Podcast on Preventing Harmful Prenatal Exposures

Autism ‘Tooth Fairy’ Studies Promise Insights into Environmental Risks

More Evidence that Folic Acid Reduces Autism Risk

Prenatal Inflammation Linked to Autism Risk

Deeper Understanding of Link between Chemical Pollutants and Autism

The use of two newer diagnostic testing technologies (chromosomal microarray analysis and whole-exome sequencing) among children with autism spectrum disorder are superior to current approaches of identifying genetic mutations linked to the disorder, according to a study funded in part by Autism Speaks. The study also found that children with certain physical anomalies were more likely to have detectable genetic mutations, findings that may help identify children who could benefit most from genetic testing.

The study appears in the September 1 issue of JAMA.  It was led by Dr. Stephen Scherer, of the Hospital for Sick Children, Toronto, who is director of the Autism Speaks MSSNG program.

Scherer and colleagues performed chromosomal microarray analysis (CMA) and whole-exome sequencing (WES) in a group of 258 unrelated children with ASD to determine the percentage of subjects with a genetic alteration [mutation] that may contribute to the features of autism spectrum disorder present in these individualsof these tests. All children underwent CMA; a random subset of 95 also underwent WES. All children underwent detailed clinical assessments for the presence of any major congenital abnormalities and minor physical anomalies and were stratified into 3 groups of increasing severity: essential, equivocal, and complex.

Of the 258 children, 24 (9.3 percent) received a molecular diagnosis from CMA and 8 of 95 (8.4 percent) from WES. The yields were statistically different between the morphological groups. Among the children who underwent both CMA and WES testing, the estimated proportion with an identifiable genetic cause was 15.8 percent. This included 2 children who received molecular diagnoses from both tests. The clinical yield for genetic testing was much higher (37.5 percent) in children with ASD who had more complex clinical presentations based on physical examination.

“The researchers demonstrate that modern diagnostic tools can greatly increase the ability to identify genetic causes for a subset of people with autism spectrum disorder.  The ability to get this information into the hands of families and clinicians is critical.   The results from the type of tests used in this study allow for a more informed and individualized treatment plan that can only be developed by knowing the specific genetic causes and associated risk factors,” said Dr. Mathew Pletcher, vice president and head of genomic discovery at Autism Speaks.    

Today in the New York Times, pediatrician/blogger Aaron Carroll explains why the US Preventive Services Task Force was wrong to conclude that more study is needed before making a clear and strong recommendation that all children be screened for autism at 18 and 24 months.

In its controversial draft statement, the task force noted evidence that autism screening is practical and effective and that early intervention improves outcomes. But it called for more research on children identified solely through universal screening programs. Most past studies have looked at children who received screening and intervention because they showed signs or were otherwise at high risk for the condition.

Read more about the task force’s controversial draft statement – now open for public comment – here.

“Without the stamp of approval from the group, payment for screening is not mandated by the Affordable Care Act,” Dr. Carroll warns. “This means that less screening will be done, even though we know three things: Autism is prevalent, screening works, and early intervention seems to make a difference in those found to have the condition.”

Read Dr. Carroll’s full NYTimes blog post here.

Also see:

Pediatricians join autism advocates to urge universal early screening

ASHA joins advocacy groups calling for universal screening of toddlers for autism

BSRC response to USPSTF call for more research on universal autism screening

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Both women and men with autism show a weak ability to read the facial expressions of others, according to a large study published in the journal PLoS ONE.

Given the huge role this ability plays in social development, the researchers urge greater attention to teaching such “mind reading” skills to young children on the autism spectrum.

The study, led by Simon Baron-Cohen of Cambridge University, looked at the scores of nearly 400 men and women with autism who took his team’s “Reading the Mind in the Eyes” test. (Take the test online here.) Typical adults show a well-established sex difference on the test: Women, on average, score higher than men.

By contrast, the average score of women with autism in the study – like that of the men in the study – fell on the extreme low end of what’s typical for non-autistic men.

This provides further support for Dr. Baron-Cohen’s “extreme male brain” theory of autism. The theory proposes that people with autism show an extreme of the typical male tendency to focus more on rules and patterns than social cues.

The test involves viewing photographs of the eye region of a face and picking which of four words describe what the person in the photo is thinking or feeling. (See example above.)

"Imagine looking at people's eyes and not being able to 'read' them effortlessly and intuitively for what the other person may be thinking or feeling,” says co-author Carrie Allison. “This research has the potential to explain why children with autism, from the earliest point in development, avoid looking at people's eyes, and become confused in rapidly changing social situations, where people are exchanging glances without words all the time…. Teaching children with autism how to read emotional expressions non-verbally should become an important clinical focus for future research and practice." (See “What can help improve social interaction and development,” in the Autism Speaks School Community Tool Kit.)

For more on Dr. Baron-Cohen’s research, including his “extreme-male brain” theory of autism, see Autism Speaks’ Q&A with autism pioneer Simon Baron-Cohen.

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The first nationwide study of pregnant women with developmental or intellectual disabilities has found high rates of pregnancy complications including fetal death, preeclampsia and preterm birth. The researchers urge the development of programs that provide these women with the additional support they need.

“We want to learn why these women and their babies fare worse than those without disabilities,” says co-author Monika Mitra, of the University of Massachusetts Medical School. “We plan to use the findings to develop practice recommendations for improving perinatal care for these women.”

The findings appear in this month’s issue of the American Journal on Intellectual and Developmental Disabilities.

The researchers analyzed hospital discharge records for 1,706 women with intellectual and/or developmental disabilities including autism spectrum disorder, cerebral palsy and Down syndrome. An estimated 40 percent of all people with autism also have intellectual disability.

The elevated rates of pregnancy complications included:

* Preeclampsia

* Preterm birth

* Fetal death (after 20 weeks)

* Caesarean delivery

* Prolonged hospitalization after delivery

With funding from the National Institutes of Health, the researchers are now delving deeper into national health care data to track pregnancy and childbirth complications and health outcomes among these women and their children. This will include a more detailed look at the needs of pregnant women with different types of developmental disabilities, including autism. 

The study was done jointly by investigators at the University of Massachusetts Medical School and Brandeis University. 

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A new study finds that the symptoms of attention deficit hyperactivity disorder (ADHD) can significantly delay the recognition of autism in children. Because early intervention is so important with autism, the researchers urge doctors and others who screen for such disorders to carefully evaluate autism in children with ADHD.

Their findings appear online today in the journal Pediatrics.

Previous research suggests that more than half of children with autism also have ADHD or some of its symptoms. Not only do the two disorders frequently occur together, they share many red flag behaviors – including inattention and impulsivity.

In the study, researchers at Boston Children’s Hospital reviewed the records on nearly 1,500 children, ages 2 to 17 years, with autism spectrum disorder. Their important findings included:

* Approximately 1 in 5 children diagnosed with autism had an earlier diagnosis of ADHD.

* On average, the children initially diagnosed with ADHD received their autism diagnosis 3 years later than the children who had autism but no prior ADHD diagnosis.

* Overall, the children with ADHD were nearly 30 times more likely to receive their autism diagnosis after age six.

* The delay in diagnosis proved true regardless of the child’s age or severity of autism symptoms.

 The authors suggest that part of the issue is that symptoms of inattention and hyperactivity tend to become obvious earlier than autism’s social communication challenges and repetitive behaviors. As a result, ADHD symptoms may overshadow the core symptoms of autism, making the latter particularly challenging to recognize in these children.

The authors urge doctors to rigorously follow the American Academy of Pediatrics guidelines for universal screening for autism spectrum disorder at 18 and 24 months of age. They should also consider referral to a specialist in autism when autism and ADHD symptoms seem to co-occur.

“This study shows how difficult it can be to diagnose autism and differentiate it from a complicated case of ADHD,” comments developmental pediatrician Paul Wang, Autism Speaks head of medical research. “Sometimes it takes evaluation by a team of experts to tease symptoms apart.”

The bottom line, Dr. Wang says: “If parents or others have any concern about autism, it's critical to get a truly expert evaluation. The right diagnosis is absolutely needed, so that the right interventions can be put in place.”

Editor’s note: With 14 sites across the US and Canada, Autism Speaks Autism Treatment Network provides coordinated, multidisciplinary care to assist children with autism and their families - including those with complex behavioral and medical needs. 

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