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Autism Speaks wants to learn how people on the spectrum and their caregivers evaluate and make decisions about therapies and other support services. What information do you use? What information do you wish you had?
Your guidance will help us develop an easy-to-use information resource to help you assess and select the best options for you and your children.
Please take our brief survey here. It takes about 8 minutes. Thanks!
The International Society for Autism Research invites students, early career investigators and members of the autism community to its “Summer Institute,” a free series of six weekly interactive seminars, June 14 to July 24.
The theme of this year’s institute is “Stakeholder Perspective and Participation,” with each seminar will be led by researchers and community stakeholders who have developed successful partnerships.
June 14, 10 am ET
Engaging stakeholders for research on adulthood
June 21, 11 am ET
Engaging stakeholders in research: A funder's perspective
June 29, 4 pm ET
Equitable inclusion of autistic adults as co-researchers
July 5, 9 am ET
Community participatory research and policy making: Initiatives with different set-ups
July 12, 2 pm ET
Stakeholder participation at the systems level
July 24, 12 pm ET
Community-academic partnerships in implementation research
Autism Speaks co-hosted a panel discussion on Gut Health in Autism, on Monday, June 4, in Washington, DC. Presentations included early findings from Autism Speaks-funded research on autism-associated changes in the gut microbiome (the intestinal bacteria that play important roles in digestion and immune function), and a question and answer period .
Watch the video recording below (1 hour 18 minutes)
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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.
Recent webinars include:
Early Brain Development in Autism
June 18, 2018, by neuropsychologist Heather Hazlett, a leading expert on brain development in autism at the University of North Carolina, Chapel Hill.
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.
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.
ARCHIVED WEBINARS, WEBCASTS AND PODCASTS
Listen to a new podcast interview with Autism Speaks Chief Science Officer Tom Frazier, hosted by Autism Science Foundation CSO Alycia Halladay.
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.
Autism Speaks invites the public to free local presentations of its “Autism Research Series: Discovery to Solutions,” featuring Chief Science Officer Thomas Frazier and other senior members of the Autism Speaks staff. Together with local autism researchers, they will explore important new scientific advances in support of people with autism and their families.
All the events will include “town hall” style discussions with panelists and audience members.
The Autism Research Series is open to all, with a special welcome to people with autism and their families, researchers, educators, clinicians and policy makers, in addition to members of the local community
“Autism Speaks is committed to being a catalyst for life-enhancing research with a special focus on near-term solutions for people with autism,” says Dr. Frazier. “As part of this commitment, we are pleased to join local autism researchers and community members to explore the important implications of the latest findings.”
Autism Speaks launched this highly popular series of research discussions in 2017. The 2018 summer schedule below includes hyperlinks for details and free registration to each event.
Madison, Wisconsin August 6 [registration link to come]
Charlotte, North Carolina August 14
Phoenix August 23 [registration link to come]
Your town not on the list, or you can’t attend in person? Watch an archived live stream of the “Discovery to Solutions” presentation recently hosted by the Autism Speaks Minnesota Community here.
Autism Speaks is pleased to announce $1.5 million in funding for two clinical trials evaluating new medical and behavioral therapies, with an emphasis on addressing the physical and mental health conditions that frequently accompany autism.
“Our goal is to identify near-term solutions for autism-related behaviors that reduce quality of life and to develop improved treatments for the medical conditions that affect many people on the spectrum,” says Autism Speaks Chief Science Officer Thomas Frazier.
Children and adults affected by autism have strikingly high rates of many medical and mental health conditions including epilepsy, gastrointestinal disorders, disrupted sleep and anxiety, as well as behaviors and communication challenges that can interfere with safety, learning and daily function.
“Funding clinical trials focused on more-effective treatments goes directly to our mission of enhancing lives today while accelerating a spectrum of solutions for tomorrow,” Dr. Frazier says.
The new research funding will support two separate clinical trials enrolling people with autism. The research grants will extend for up to three years, with up to $250,000 in funding per year for each study.
In inviting applications for this funding, Autism Speaks is looking for research that emphasizes the following:
* Target outcomes (goals) should include improvements in one or more medical and/or mental health conditions associated with autism, in addition to improvements in challenging autism symptoms that decrease the quality of life.
* Autism Speaks will give preference to clinical studies that include less cognitively able participants. Around one-third of people with autism have an intellectual disability, and this population has been underrepresented in autism research.
* The study should include objective measures, or biomarkers, of improvements and other changes over the course of the clinical trial. This is in line with Autism Speaks’ strategic goal of fostering consensus and objectivity in how autism research identifies and measures the benefits of new therapies, support services and other approaches to improving quality of life for people on the spectrum.
To learn about some of the past clinical studies funded by Autism Speaks, also see:
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 email@example.com.
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.
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