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May 11 at INSAR 2018, researchers with the Autism Speaks Autism Treatment Network (ATN) shared the promising early results of a pilot study evaluating the benefits of an online program that teaches parents resiliency skills that buffer daily stress and its emotional and physical toll.
Karen Kuhlthau, of Massachusetts General Hospital, led the study, which was funded through the ATN’s role as the federally funded Autism Intervention Research Network on Physical Health, which Dr. Kuhlthau directs.
The online program – called the “Stress Management and Resiliency Training/Relaxation Response Resiliency Training Program” (SMART-3RP) – is based on the principles and practices of mind-body medicine. It consists of nine, 90-minute sessions using skill-building exercises to teach a variety of relaxation techniques such as meditation, conscious acceptance and yoga.
The investigators enrolled 51 parents from across the United States in the study. Thirty-three, or 65 percent, completed at least six sessions – suggesting that the program was practical to use.
The results: On completion, participants gave the program an average score of 7.9 on a 1 to 10 scale of effectiveness in reducing their stress-related symptoms. Participants also reported significant improvements in resiliency, stress coping, social support and mindfulness over the course of the program. Most of the participants were mothers (89 percent), white (78 percent), married/partnered (76 percent) and had a college degree (80 percent).
“We are encouraged by the benefits that parents of children with autism reported from this practical and easy to access program,” Dr. Kuhlthau says.
What’s next? “Going forward we hope to improve the program by making it easier to implement and shortening the sessions,” Dr. Kuhlthau adds. “We also hope to perform a larger trial with a more-diverse group of parents.” The goal of this research to develop a program that’s widely accessible and effective in improving parent and child well-being.
Parents interested in participating in the expanded trial can contact Justin Farmer at firstname.lastname@example.org.
In recent years, research has found that people with autism tend to have lower bone density and more fractures, on average, than is typical for their ages.
May 20 at INSAR2018, researchers with the Autism Speaks Autism Treatment Network (ATN) presented the early findings of a study exploring possible causes and solutions. The research was funded through the ATN’s federally funded role as the Autism Intervention Network on Physical Health.
The study’s participants included 49 boys, ages 8 to 17, seen at MassGeneral Hospital for Children. Roughly half (25) had autism, and the others served as a comparison group.
The researchers assessed bone mineral density at multiple places in the body. They also asked the boys and their caregivers to complete a three-day diet and exercise diary.
The results: As expected, the boys with autism had lower bone density overall than did the comparison group of boys who didn’t have autism. In addition, the researchers found:
* On a standardized scale of physical activity, only 27 percent of the boys with autism fell into the “very physically active” category, compared to 79 percent of the other boys.
* On average, the boys with autism consumed significantly less protein, calcium and phosphorus, and more carbohydrates.
* Within the group with autism, the more protein, calcium and phosphorus a boy consumed, the greater his bone density.
Take-home message: “Our findings suggest that encouraging diets higher in protein and fortified dairy as well as increased high-level exercise may improve bone health,” says neurologist Ann Neumeyer, the study’s lead author and the medical director of the Lurie Autism Center, in Lexington, Massachusetts.
Calcium and phosphorus play important roles in bone formation, and both are particularly abundant in dairy products and fish. For children on dairy-free diets, supplements containing calcium and phosphorus may be needed, Dr. Neumeyer says. She calls on healthcare providers to assess dietary intake of dairy and protein in children with autism as part of their wellness care and be mindful of the increased risk for low bone density among these children.
What’s next? The research team hopes to expand the study to include more children with autism – including girls – to learn more about their nutritional needs and risk for low bone density and fractures.
On May 10 at INSAR2018, Autism Speaks Weatherstone Fellow Katie Jankowski presented the early results of her study looking at how teens and tweens with autism decipher self-conscious emotions like pride and embarrassment in other people.
Her findings counter the common belief that people with autism suffer “mind blindness,” or the inability to read emotions in others.
To the contrary, Jankowski found that, while many adolescents with autism have difficulty automatically inferring what another person is feeling, they appear to deduce emotions based on logical expectations and the social rules that they’ve learned. This approach can present difficulties when there’s a mismatch between what another person might be expected to feel in a situation, she notes.
Jankowski enrolled 56 adolescent boys, ages 11 to 17, in her study. Thirty had autism, and 26 served as a comparison group. All had average to above-average intelligence (IQ).
She showed the boys four video clips of singing performances and asked them to rate each performer’s pride or embarrassment on a 1 to 4 scale.
The results: In one clip, a teen sings poorly and makes a face that clearly conveys embarrassment afterwards. When asked how the teen in the video was feeling, all the study participants – including those with autism – correctly rated the performer as “embarrassed.”
Similarly, they all correctly rated as “feeling proud” a teen who sang well and clearly looked pleased with the performance.
By contrast, the participants with autism were far less likely to correctly identify an expression of embarrassment when it followed a good performance or an expression of pride that followed an obviously poor performance.
Take home message: “Adolescents with milder forms of autism can recognize self-conscious emotions and do feel self-conscious emotions for others,” she explains. “Their real-world interpersonal challenges may reflect a strict adherence to learned social rules, even in situations where they may not work.”
While the boys were watching the video clips, Jankowski also tracked their brain activity with an MRI scanner. While all the boys shared similar patterns of brain activity, those who had autism had some atypical activity in parts of the brain associated with processing social cues and sensory information as well as picking out relevant information from a scene.
This could suggest that people with autism rely more heavily on abstract understanding of social situations and logical expectations versus automatic recognition of emotions, Jankowski says.
What’s next? The goal of Jankowski’s Weatherstone Fellowship project is to improve social-support programs and other interventions for people with autism who need and desire them.
Since 2015, Autism Speaks has been working closely with the World Health Organization (WHO) to develop and adapt its Caregiver Skills Training Program for underserved communities around the world, including the United States.
The program adapts evidence-based strategies to give parents, teachers and other community members practical and culturally appropriate strategies to support the development of children with autism and other developmental disorders.
May 10 at INSAR2018, Autism Speaks-funded researcher Rosa Hoekstra and her team described the process they were using to adapt and evaluate the Caregiver Skills Training for communities in Ethiopia.
To date their process has involved a series of four consultation meetings with local stakeholders. This has included meetings with parents, local psychologists and psychiatrists and representatives of private advocacy organizations in Ethiopia’s capital city of Addis Ababa, as well as meetings with parents, community workers and other stakeholders in a rural area of Ethiopia.
During the consultations, participants agreed that the program was addressing an urgent need in a practical and culturally appropriate way. They also made several recommendations for making the program more effective, acceptable and feasible in Ethiopia.
The results: Based on the feedback they received, the Ethiopian team is now testing an adapted Caregiver Skills Training program in Ethiopia. Its customized features include:
* Increased use of pictures and reduced reliance on text to ease use by caregivers with limited reading ability.
* Increased emphasis on teaching caregivers to apply the program’s strategies by playing with their children. In Ethiopian culture, caregivers don’t typically play with their children, Dr. Hoekstra notes. Rather children are expected to play with each other.
* Greater emphasis on countering negative beliefs and attitudes about children with autism and their parents. Most Ethiopian families affected by autism still experience severe stigma and social isolation, and many hold themselves responsible for their children’s disabilities.
What’s next? The Caregiver Skills Training team in Ethiopia is also looking for new partnerships with community health organizations to better meet the needs of children and families affected by autism and other developmental disabilities.
On Wednesday May 9, at the annual INSAR press conference, social neuroscientist Daniel Yang, of The George Washington University, described his team’s discovery of a potentially important difference in brain development between boys and girls on the autism spectrum.
The finding may help account for the so-called “female protective factor” that results in autism being much less common in girls and women than in boys and men.
Autism Speaks helped launch Dr. Yang’s autism-research career with a 2014 Autism Speaks Meixner Postdoctoral Fellowship in Translational Research. He is now continuing his research with the support of National Institutes of Health grant to Kevin Pelphrey, one of his Meixner fellowship mentors.
The team began their study by using brain scans (MRI) to look at the thickness of the cerebral cortex – the highly folded sheet of brain cells that forms the surface of the brain – in 93 boys, ages 8 to 18, roughly half of whom had autism. (The two groups were matched across age and cognitive abilities.)
In particular, they examined a cerebral cortex brain network surrounding a brain structure called the right posterior superior temporal sulcus. This network is highly involved in social communication – for example, in understanding the intention of someone else’s eye contact or other actions. (Social communication disability is one of autism’s core symptoms.)
The results: The George Washington investigators discovered that this region of the cortex thinned significantly faster with age in the group of boys with autism compared to the group of unaffected boys. (See graph above.) They also found that, within the group affected by autism, the age-related cortical thinning was faster in the boys who had the most severe social-communication disabilities.
Next, the researchers tested whether there were similar autism-related differences in cortical thinning in 48 girls who had autism, compared to 45 unaffected girls. They found no evidence of advanced cortical thinning in this region of the brain or elsewhere. (See graph above.)
Take home message: This suggests that autism may be neurobiologically different in boys and girls, at least for this brain network, Dr. Yang says. It’s also in line with a possible female protective effect, he says, in that the girls appeared to be less “vulnerable” to a possible disruption in the cortical thinning schedule in this brain area – which is critically important for social communication.
What’s next? “Our goal,” Dr. Yang says, “is to establish a solid foundation of science-based understanding that can guide the development of more accurate diagnosis, personalized interventions and support services for those who need and want them.
Autism Speaks is proud to be a longstanding sponsor of the annual meeting of the International Society for Autism Research (INSAR), this year in Rotterdam, the Netherlands, May 9- 12. The conference is the world’s largest gathering of autism scientists, doctors, therapists, parents and individuals on the spectrum.
Events include more than 20 scientific presentations by Autism Speaks science staff, funded researchers and clinicians in the Autism Speaks Autism Treatment Network. Each provides a glimpse into the early findings of one or more highly promising research projects that was competitively selected for presentation by the INSAR leadership.
“Autism Speaks is honored to continue our sponsorship of the INSAR meeting as the leading conference for discoveries in autism research,” says Autism Speaks Chief Science Officer Thomas Frazier. “The studies presented this year cover the full range of research from genetics and biology to early brain changes to the delivery of tailored interventions. They represent meaningful advances in our understanding of the biology of autism and improvements in our ability to deliver interventions that improve lives.”
You can view the full lineup of Autism Speaks-affiliated presentations and activities in the program book below.
Also see the full video of the opening INSAR press conference below today's postings.
The Interagency Autism Coordinating Committee (IACC) has published its annual list of the past year’s highlights in autism research – 2017 IACC Summary of Advances in Autism Spectrum Disorder Research.
Eight of the “Top Twenty” reports came out of studies supported by Autism Speaks, either directly through research grants or through the Autism Speaks Autism Treatment Network (ATN) in its federally funded role as the Autism Intervention Research Network for Physical Health (AIR-P).
The twenty scientific papers spanned the broad range of autism research, including new findings on:
* early brain development in infants at risk for autism
* the interplay between genetic and epigenetic effects in autism
* the brain and behavioral effects of parent-led, play-based interventions
* a promising medication to curb obesity and diabetes risk related to the use of anti-psychotic medicines
* improved understanding of the benefits and limitations of the behavioral and diagnostic scales used by clinicians when diagnosing and meeting the needs of people who have autism.
“Autism Speaks is proud to have supported these ground-breaking studies in its commitment to being a catalyst for research breakthroughs that improve the lives of people who have autism,” says Autism Speaks Chief Science Officer Thomas Frazier. “This work is truly made possible by the passion and generosity of our volunteers and donors.”
The selections supported by Autism Speaks include:
Functional neuroimaging of high-risk 6-month-old infants predicts a diagnosis of autism at 24 months of age. Emerson RW, Adams C, Nishino T, et al. Sci Transl Med. 2017 Jun 7;9(393). [Autism Speaks research grant 6020]
Early brain development in infants at high risk for autism spectrum disorder. Hazlett HC, Gu H, Munsell BC, et al. Nature. 2017;542:348-51. [Autism Speaks research grant 6020]
Cross-tissue integration of genetic and epigenetic data offers insight into autism spectrum disorder. Andrews SV, Ellis SE, Bakulski KM, Sheppard B, et al. Nat Commun. 2017 Oct 24;8(1):1011. [Autism Speaks research grants 7659 and 6020]
Adaptive behavior in autism: minimal clinically important differences on the Vineland-II. Chatham CH, Taylor KI, Charman T, et al. Autism Res. 2017 Sep 21. [Autism Speaks science staff and Autism Speaks ATN and the AIR-P]
A randomized, placebo-controlled trial of metformin for the treatment of overweight induced by antipsychotic medication in young people with autism spectrum disorder: open-label extension. Handen BL, Anagnostou E, Aman MG, et al. J Am Acad Child Adolesc Psychiatry. 2017 Oct;56(10):849-856.e6. [Autism Speaks ATN and the AIR-P]
For more information about the IACC’s publications and activities, visit www.iacc.hhs.gov.
Listen to a new podcast interview with Autism Speaks Chief Science Officer Tom Frazier, hosted by Autism Science Foundation CSO Alycia Halladay.
The Interagency Autism Coordinating Committee (IACC) will hold its next quarterly meeting on October 17, 2018, at the National Institutes of Health in Bethesda, Maryland, with a live webcast. The full-day meeting is open to the public and includes a public comment period. The IACC coordinates federal efforts related to autism.
Autism Speaks encourages members of the autism community to participate and make their views known. Learn more and register to provide public comment here.
Webinars sponsored by the Autism Speaks Autism Treatment Network & the Autism Intervention Research Network on Physical Health
Advances in Autism Research & Care (AARC) is a free, monthly webinar series sponsored by the Autism Intervention Research Network on Physical Health (AIR-P) and the Autism Speaks Autism Treatment Network (ATN). Webinar topics alternate between research reports by ATN/AIR-P investigators and trending topics in autism healthcare. Though aimed primarily at educating healthcare providers, the webinars are open to the public. We extend a special welcome to members of the autism community.
Upcoming webinars for 2018 include:
Advocacy and Autism
Autism BrainNet (post-mortem tissue donation for autism research)
Wednesday, May 30, from 1 to 2 pm Eastern Register here.
Send us your topic suggestions:
We would love your input on topics and presenters for our autism healthcare and research series. Our goal is to identify relevant topics and broaden our audience – starting with you. We are excited to collaborate and hear about your various research interests. If you have an autism-related topic that you want to learn more about, please fill out this short survey. Find links to all our past webinars here.
On December 14, 2017, Autism Speaks Chief Science Officer Tom Frazier and Chief Program and Marketing Officer Lisa Goring discussed Autism Speaks’ newly released Strategic Plan for Science 2018-2020 and took your questions.
The federal Interagency Autism Coordinating Committee (IACC) holds quarterly meetings at the National Institutes of Health in Bethesda, Maryland. The full-day meeting is open to the public and includes a public comment period. It can also be viewed via live webcast from 9 am to 5 pm. The IACC is charged with overseeing and coordinating autism-related research and services across federal agencies and departments within the National Institutes of Health. Autism Speaks encourages members of the autism community to participate in the meeting and make their views known.
Register to attend here.
Find meeting agendas here.
View archived webcasts here.
On Feb. 22nd, Donna Murray, Autism Speaks vice president for clinical programs and head of our Autism Treatment Network, hosted a Facebook Live chat, answering questions related to "Improving healthcare for people on the autism spectrum." You can view the archived webchat below or by clickinghere. Check out the comment section for related resources and links.
On Jan. 25, Autism Speaks VP for Genomic Discovery Mat Pletcher hosted a Facebook Live chat about the Autism Speaks research program. View the archived chat - including an extended question and answer session below.
The Centers for Disease Control and Prevention (CDC) today released its biennial update of autism’s estimated prevalence among the nation’s children, based on an analysis of 2014 medical records and, where available, educational records of 8-year-old children from 11 monitoring sites across the United States.
The new estimate represents a 15 percent increase in prevalence nationally: to 1 in 59 children, from 1 in 68 two years previous.
However, prevalence estimates varied widely between monitoring sites, with significantly higher numbers at sites where researchers had full access to school records. This suggests that the new national numbers reflect a persistent undercount of autism’s true prevalence among the nation’s children.
“These findings demonstrate that while progress has been made on some fronts, there is still much work to do,” says Autism Speaks President and Chief Executive Officer Angela Geiger. “They urgently warrant a significant increase in life-enhancing research and access to high quality services for people with autism across the spectrum and throughout their lifespan.”
Autism Speaks calls on legislators, public health agencies and the National Institutes of Health to advance research that helps us better understand the increased prevalence and the complex medical needs that often accompany autism. In doing so, policy makers should follow the U.S. Interagency Autism Coordinating Committee’s recommendation to double the autism research budget.
Autism Speaks also urges government leaders to advance policies that better provide individualized support and services in areas including education, transition to adulthood, residential options and employment.
Key findings of the new report include:
* Nationally, 1 in 59 children had a diagnosis of autism spectrum disorder (ASD) by age 8 in 2014, a 15 percent increase over 2012.
* But estimated rates varied, with a high of 1 in 34 in New Jersey (a 20 percent increase), where researchers had better access to education records. On the low side, autism’s estimated prevalence in Arkansas was just 1 in 77. “This suggests that the new national prevalence estimate of 1 in 59 still reflects a significant undercount of autism’s true prevalence among our children,” says Autism Speaks Chief Science Officer Thomas Frazier. “And without more and better research, we can’t know how much higher it really is.”
* The gender gap in autism has decreased. While boys were 4 times more likely to be diagnosed than girls (1 in 37 versus 1 in 151) in 2014, the difference was narrower than in 2012, when boys were 4.5 times more frequently diagnosed than girls. This appears to reflect improved identification of autism in girls – many of whom do not fit the stereotypical picture of autism seen in boys.
* White children were still more likely to be diagnosed with autism than were minority children. However, the ethnic gap had narrowed since 2012, particularly between black and white children. This appears to reflect increased awareness and screening in minority communities. However, the diagnosis of autism among Hispanic children still lagged significantly behind that of non-Hispanic children.
* Disappointingly, the report found no overall decrease in the age of diagnosis. In 2014, most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2. Earlier diagnosis is crucial because early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan.
“It’s encouraging to see evidence of improved identification of autism in girls and minority groups,” Dr. Frazier says. “We must continue to narrow this gap while greatly speeding up the time from first concerns about a child’s development to screening, diagnosis and intervention. If most children aren’t being diagnosed until after age 4, we’re losing months if not years of intervention that can deliver benefits throughout their lives.”
* The new report found that new diagnostic criteria for autism adopted in 2013 (DSM-5) made only a slight difference in prevalence estimates. Autism prevalence was slightly higher (by 4 percent) based on the older (DSM-IV) definition of autism compared to DSM-5. Future prevalence reports will be based fully on the DSM-5 criteria for autism and provide a better measure of the change’s impact.
* The nation still lacks any reliable estimate of autism’s prevalence among adults. As autism is a lifelong condition for most people, this represents an unacceptable gap in our awareness of their needs – particularly in areas such as employment, housing and social inclusion. Each year, an estimated 50,000 teens with autism age out of school-based services.
A wide range of resources for recognizing early signs of autism and for accessing support and services throughout the lifespan are available at AutismSpeaks.org.
Autism Speaks encourages people to go to AutismSpeaks.org and volunteer, donate and get others to come on board. Now is the time to make a difference for the millions of people with autism worldwide.
In a new study, an international team of researchers used the power of whole genome sequencing to discover a previously hidden type of genetic change associated with autism. They also discovered that these rare structural variations are inherited almost exclusively from fathers – for reasons yet to be discovered.
The report appears today in the journal Science.
“These unexpected findings broaden our appreciation for the enormous diversity of ways that autism develops, and in doing so, hold promise for the development of personalized therapies and services,” says Autism Speaks Chief Science Officer Thomas Frazier. “This study also illustrates the importance of the detailed, comprehensive research made possible through whole genome sequencing.”
The researchers analyzed the complete genomic sequences of 9,274 people in families affected by autism. The vast majority of these people had contributed DNA to the Simons Simplex Collection or the Autism Speaks MSSNG Whole Genome Sequencing Project.
Exploring the genome’s “dark matter”
The researchers linked increased risk for autism to rare structural changes (deleted or duplicated DNA sequences) in the still-mysterious “noncoding” region of the human genome.
This region makes up 98 percent of our DNA. It lies outside the 2 percent of our DNA that makes up our genes. (Genes “code,” or spell-out directions, for creating proteins. Proteins, in turn, control the development and activity of every cell in the body.)
Until recently, researchers largely ignored the noncoding portion of the genome, and some even dubbed it “junk DNA.” We now know that noncoding DNA plays a crucial if incompletely understood role in directing when and where our genes switch on and off. This precise coordination of gene activity is particularly crucial for brain development and function.
Hidden structural variations
Still, a role for non-coding structural variations, like the duplications and deletions identified in the new study, had not been widely investigated until now. This was due, in part, to the difficulty of detecting these variations and their effects.
The research team developed a new method for analyzing whole genome sequences that allowed them to both detect the rare noncoding structural changes and identify which ones disrupt the regulation of gene activity and contribute to autism.
“This represents an important step toward understanding how variation in the ‘switches’ that turn genes on and off influence the development of the brain and risk for autism,” says senior study author Jonathan Sebat, of the University of California San Diego School of Medicine. “Still larger studies could help to identify specific switches that are important and could significantly improve the value of [whole genome] DNA sequencing in the clinic.”
From basic science to applications that improve lives
The goal of clinical genome sequencing for autism is to guide the development of personalized plans to address each person’s needs for treatment and/or support services. This is particularly important for the many subtypes of autism that are accompanied by serious medical problems and cognitive disabilities.
“This kind of analysis can only be done using whole genome sequence data and is, in part, why we created MSSNG,” says study co-author Stephen Scherer. Dr. Scherer is the research director of the Autism Speaks MSSNG program. He also directs the Centre for Applied Genomics at Toronto’s Hospital for Sick Children (SickKids) and the McLaughlin Centre at the University of Toronto.
“Understanding different types of genetic variants is vital to understanding the biochemical pathways that underlie autism,” adds Dean Hartley, Autism Speaks senior director of discovery and translational science. “Once we understand a given pathway, we can design personalized interventions that support or change that pathway to increase a person’s quality of life.”
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