UC Davis Health | University of California, Davishttps://health.ucdavis.edu UC Davis Health is charged with discovering and sharing knowledge and providing the highest quality care to our community. Our ultimate goal is to advance health both in our local community and around the globe. 202104_mind-institute-showcases-research-gives-tour-during-virtual-open-house-video Wed, 14 Apr 2021 07:00:00 GMT MIND Institute showcases research, gives tour during virtual open house (video) <p>The UC Davis MIND Institute offered a behind-the-scenes virtual tour of its clinic, labs and facility recently. The event also featured research updates and a live question and answer session, and is available for anyone to view online.</p>
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UC Davis MIND Institute researchers and clinical experts offered a unique behind-the-scenes tour of the internationally recognized clinic, research labs and facility on Saturday. The annual event is typically held in person, but this year it was virtual due to COVID-19.

Faculty members took advantage of the different format to offer tours of areas that aren’t usually open to the public, such as the Biosciences Building, where many researchers have their labs. The change also allowed people from outside the area – including other countries – to view the event.

“The virtual open house enabled us to connect with families and our community, despite the pandemic,” said MIND Institute Director Leonard Abbeduto. “We enjoyed answering questions and sharing updates about our research into neurodevelopmental conditions. Next year, we very much hope to be interacting in person again.” 

The presentation also featured information about clinic visits at the MIND Institute, including what a typical blood draw is like for children, and how the Child Life Program team helps to make the experience more comfortable.

The open house included presentations about the following areas:

  • Brain imaging methods: MRI, ERP and EEG
  • The Child Life Program and Phlebotomy Lab
  • The Genomic Medicine Division
  • The Telehealth Program

Abbeduto and other faculty members also answered questions from attendees, which ranged from resources available for parents to what educational path to take for those interested in working at the MIND Institute in the future.

The full open house can be viewed here.

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202104_new-test-to-study-language-development-in-youth-with-down-syndrome Thu, 08 Apr 2021 07:00:00 GMT New test to study language development in youth with Down syndrome <p>A team led by UC Davis Health researchers tested and validated a new set of procedures for collecting, measuring and analyzing the spoken language of youth with Down syndrome in a naturalistic setting.</p> Expressive language sampling (ELS) is a useful tool for measuring communication development in youth with Down syndrome, a new multi-site study has found. 

The study was co-led by Angela Thurman and Leonard Abbeduto from the UC Davis MIND Institute and the Department of Psychiatry and Behavioral Sciences. It focused on language as an outcome measure to detect meaningful changes in communication skills of individuals with Down syndrome. It successfully tested and validated ELS as a reliable set of procedures for collecting, measuring and analyzing the spoken language of participants interacting in a naturalistic setting. 

Down syndrome and language delays

Down syndrome is the leading genetic cause of intellectual disability. Approximately one in every 700 babies in the United States is born with Down syndrome. Individuals with Down syndrome frequently have speech and language delays that might severely affect their independence and successful community inclusion. 

“Interventions leading to improvements in language would have great impacts on the quality of life of individuals with Down syndrome,” said Leonard Abbeduto, director of the UC Davis MIND Institute, professor of psychiatry and behavioral sciences and senior author of the study. “To develop and evaluate such interventions, we need a validated measurement tool and ELS provides that.” 

The ELS procedure

During the ELS procedure, researchers collect samples of participants’ speech during two types of natural interactions: conversation and narration. 

In conversation, trained examiners engage participants on a variety of topics in a sequenced and standardized manner. They start the conversation with a subject the participants find interesting then introduce a topic from predetermined age-appropriate lists. In their interactions, they follow a script to minimize their participation and maximize the participants’ contribution. On average, the conversation lasts around 12 minutes. 

In narration, the participants independently construct and tell the story in a wordless picture book. This process usually takes 10 to 15 minutes. 

The researchers analyze the collected conversation and narration samples. In a previous ELS application involving participants with fragile X syndrome, the researchers derived five language outcome measures: talkativeness, lexical diversity (vocabulary), syntax, dysfluency (utterance planning) and unintelligibility (speech articulation). 

Validity and reliability of the ELS measures in Down syndrome studies

For this study, four university testing sites recruited 107 participants with Down syndrome (55 males, 52 females). Participants were between the ages of 6 and 23 (mean age of 15.13 years) and with IQ levels under 70 (mean IQ of 48.73). 

The participants came for a first visit to complete the ELS procedures and to take assessment tests of their IQ, autism symptom severity and other measures. Four weeks later, they revisited for a retest of the ELS procedures. This retest was to assess practice effects over repeated administrations and to check the reliability of ELS measures. 

The study found that the ELS measures were generally valid and reliable across ages and IQ levels. It showed that the vocabulary, syntax and speech intelligibility variables demonstrated strong validity as outcome measures. Also, the ELS procedures were feasible for the majority of participants who successfully completed the tasks. Youth who were under 12, had phrase-level speech or less, and had a 4-year-old developmental level or lower found it more difficult to complete. 

“Spoken language is the primary way we interact with the people around us, making language a frequent target of treatment. However, we have not had tools sensitive and accurate enough to confidently measure change in language treatment studies,” said Thurman, associate professor of psychiatry and first author on the study. “The data from this study provide a critical first step indicating these procedures can be used to effectively measure language for people with Down syndrome.” 

It was co-authored by Jamie O. Edgin of University of Arizona, Stephanie L. Sherman and Debra Hamilton of Emory University, Audra Sterling of University of Wisconsin-Madison, Elizabeth Berry-Kravis of Rush University Medical Center, and Andrea McDuffie of UC Davis Health. 

This study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (R01HD074346, P50HD103526) and National Center for Advancing Translational Sciences (UL1 TR000002). 

The study was published April 8 in Journal of Neurodevelopmental Disorders and is available online. The researchers provided online manuals to help other investigators with the administration, training and assessment of fidelity of ELS procedures. 

Study: Thurman et al. “Spoken Language Outcome Measures for Treatment Studies in Down syndrome: Feasibility, Practice Effects, Test-Retest Reliability and Construct Validity of Variables Generated from Expressive Language Sampling,” Journal of Neurodevelopmental Disorders. DOI: 10.1186/s11689-021-09361-6

Related stories:

Facebook Live conversation with Angela Thurman and Kathleen Angkustsiri about Down syndrome

Five language outcome measures evaluated for intellectual disabilities studies

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202104_15-million-grant-to-renew-center-studying-effects-of-maternal-infections-on-offspring- Wed, 07 Apr 2021 07:00:00 GMT $15 million grant to renew center studying effects of maternal infections on offspring <p>Discovering how infections during pregnancy can lead to psychiatric illness and developmental disorders in offspring years later is the subject of a $15.7 million grant from the National Institute of Mental Health to the Conte Center at the University of California, Davis.</p> Discovering how infections during pregnancy, such as COVID-19 and influenza, can lead to psychiatric illness and developmental disorders in offspring years later, and how to detect, prevent or treat these disorders, is the subject of a $15.7 million grant from the National Institute of Mental Health to the Conte Center at the University of California, Davis.

The UC Davis Conte Center, organized through the Center for Neuroscience, was originally established with an NIH grant in 2016. This grant renews the center’s funding for another five years.

“UC Davis is in the upper echelon of translational mental health research,” said co-principal investigator Cameron Carter, C. Bryan Cameron Presidential Chair in the Center for Neuroscience and distinguished professor of psychiatry and psychology in the School of Medicine. “The establishment of a UC Davis Conte Center in 2016 was an incredible accomplishment, and to renew it in 2021 is an even bigger accomplishment.”

Building on promising findings from the initial grant, the renewed funding will allow investigators to discover biomarkers for at-risk pregnancies and new treatments to prevent the detrimental effects of maternal infection on brain development in offspring.

“The team at the UC Davis Conte Center is helping us understand the origins of significant mental health disorders,” said Mark Winey, dean of the College of Biological Sciences. “And their research will have far-reaching impacts and provide foundational understandings for how we approach mental health for current and future generations.”

Psychiatric illnesses and neurodevelopmental disorders, including schizophrenia, affect 15-20 percent of people worldwide, yet current treatments are at best only partially effective.

“The rates of schizophrenia and autism have dramatically increased following pandemics in the past, and we are deeply concerned about a similar impending wave of psychiatric illness following the current COVID-19 pandemic,” said co-principal investigator Kimberley McAllister, director of the Center for Neuroscience and a professor in the Department of Neurology, School of Medicine; and Department of Neurobiology, Physiology and Behavior, College of Biological Sciences. “Newly funded projects in our center will reveal approaches to mitigate disease in offspring and even to prevent it in future pregnancies.”

Origin of mental illness

When an expectant mother is exposed to a pathogen, such as a virus or bacterial infection, her body’s immune response can in some cases trigger neurodevelopmental changes in her offspring. The initial Conte Center grant enabled an interdisciplinary team of researchers to discover that this immune response can result in offspring with changes in brain development and behavior that show up surprisingly early after birth, and that are similar in species as disparate as mice and monkeys.

“The Conte Center’s NIMH grant renewal is a testament to the groundbreaking, interdisciplinary research that UC Davis School of Medicine and our main campus partners are conducting.”

— Allison Brashear

The changes in brain development and behavior seen in animal models are comparable to changes seen in human neurodevelopmental and psychiatric disorders like schizophrenia and autism.

Most pregnancies, however, are resilient to these risks. The question is how to determine which pregnancies are at risk, and why.

“Because many of these diseases start very early in development, often prenatally, we are especially interested in understanding how the immune response of the mother during pregnancy alters brain health in her offspring,” McAllister said.

The future of mental health

Once these mechanisms are understood, scientists may be able to create novel therapies, treatments and interventions optimized for the developmental age and sex of at-risk offspring following maternal infection, as well as approaches to prevent the effects during at-risk pregnancies.

The purpose of the National Institute of Mental Health’s Silvio O. Conte Centers program is to support interdisciplinary teams of researchers addressing high-risk, high-impact questions that will advance our understanding of mental disorders and their treatments. The Conte Center award recognizes the strength of interdisciplinary research at UC Davis, and its researchers together represent a diverse coalition of experts from multiple departments and centers across UC Davis, including the Center for Neuroscience, MIND Institute, Center for Mind and Brain, California National Primate Research Center, College of Biological Sciences, School of Medicine, College of Letters and Science, and College of Engineering.

“The Conte Center’s NIMH grant renewal is a testament to the groundbreaking, interdisciplinary research that UC Davis School of Medicine and our main campus partners are conducting,” said Allison Brashear, dean of the School of Medicine. “It is truly impressive to see how UC Davis is bringing together its world-class leaders in neurology, psychiatry, behavioral health and biological sciences, among others, to improve the health of current and future generations.”

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202104_study-finds-risk-of-leukemia-higher-than-expected-in-children-with-down-syndrome Tue, 06 Apr 2021 07:00:00 GMT Study finds risk of leukemia higher than expected in children with Down syndrome <p>Down syndrome remains a strong risk factor for childhood leukemia, a new study led by UC Davis and UC San Francisco researchers has found.</p> A new large-scale study led by UC Davis Health and UC San Francisco researchers assessed the risks of leukemia in children with Down syndrome. It pointed to stronger than expected associations between Down syndrome and acute myeloid leukemia (AML), one type of blood cancer.

Down syndrome is one of the most common genetic conditions in the U.S. and Canada. According to the U.S. Centers for Disease Control and Prevention, about 6,000 babies with Down syndrome are born in the United States each year. That’s approximately one in every 700 babies born in the U.S. and one in 750 newborns in Canada.

Children with Down syndrome have a substantially increased risk of multiple health conditions compared to the general population. They have a particularly elevated risk (estimated 150-fold) of developing AML before age 5.

The study, published in The Journal of Pediatrics, confirmed that Down syndrome is a strong risk factor for childhood leukemia.

Study findings on leukemia in children with Down syndrome

The researchers examined medical data of more than 3.9 million children born 1996-2016 in seven U.S. healthcare systems or in Ontario, Canada. The data included the children’s health information from birth to cancer diagnosis, death, age of 15 years, disenrollment, or Dec. 30, 2016.

“One main strength of this study is its large cohort with more leukemia cases in children with Down syndrome than most previous studies,” said Emily Marlow, first author and a recent graduate from UC Davis Department of Public Health Sciences and Graduate Group in Epidemiology. “This allowed more precise risk estimation, especially for rare leukemia types such as AML-7, previously estimated from small case reports.”

The study estimated the incidence and hazard ratios of leukemia for children with Down syndrome and other children, adjusting for health system, child’s age at diagnosis, birth year and sex. It found that 2.8% of children with Down syndrome were diagnosed with leukemia, compared to 0.05% of other children.

Compared to other children, kids with Down syndrome had a higher risk of AML before age 5 and a higher risk of acute lymphoid leukemia (ALL) regardless of age. In children with Down syndrome, ALL was more common between ages 2-4 years, while AML was more common in younger kids - the highest incidence during the first year of life. For other children, AML incidence remained very low through age 14 years, whereas ALL peaked at age 3 years and steadily declined until age 8 years.

The study also found that males and Hispanic children were more likely to be diagnosed with Down syndrome and more likely to develop leukemia than their counterparts. White children have a higher incidence rate of ALL and more likely to have Down syndrome than Black children.

Catching leukemia in kids


Diana Miglioretti

The researchers urged parents with kids with Down syndrome to keep an eye for signs of leukemia. Common symptoms include fatigue or pale skin, infections and fever, easy bleeding or bruising, shortness of breath and coughing. Parents are advised to talk to the pediatrician if their children exhibit any of these symptoms.

“The good news is that childhood leukemia can be very treatable if caught early,” said co-senior author Diana L. Miglioretti, professor and division chief of biostatistics at the UC Davis Department of Public Health Sciences and affiliate investigator with Kaiser Permanente Washington Health Research.

Imaging technologies and leukemia

A steep rise in medical imaging over the past two decades, particularly in computed tomography (CT) exams, increased children’s exposure to higher levels of radiation. Previous studies have shown that CT scanning increases leukemia risk.

“Given the potential for ionizing radiation to increase leukemia risk in children with Down syndrome, other non-ionizing radiation modes of imaging, such as ultrasound and MRI, should be used as the first line image tests,” said co-senior author Rebecca Smith-Bindman, a UCSF School of Medicine professor with the Departments of Radiology and Biomedical Imaging and of Epidemiology and Biostatistics.

This study was funded by the National Cancer Institute (R01CA185687 and R50CA211115). It was supported by ICES (funded by the Ontario Ministry of Health and Long-Term Care (MOHLTC)) and the Canadian Institute for Health Information (CIHI). It was facilitated by the Pediatric Oncology Group of Ontario’s Networked Information System (funded by MOHLTC).

A complete list of co-authors is available online.

Article: Marlow et. al. (2021). Leukemia risk in a cohort of 3.9 million children with and without Down syndrome, The Journal of Pediatrics, DOI: 10.1016/j.jpeds.2021.03.001

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202103_study-finds-adolescents-with-autism-may-engage-neural-control-systems-differently- Fri, 12 Mar 2021 08:00:00 GMT Study finds adolescents with autism may engage neural control systems differently <p>UC Davis Health researchers studying executive control in adolescents and young adults with autism have published new research that suggests a unique approach, rather than impairment.</p> A new study by UC Davis MIND Institute researchers suggests that executive control differences in autism spectrum disorder (ASD) may be the result of a unique approach, rather than an impairment.

Executive control difficulties are common in individuals with autism and are associated with challenges completing tasks and managing time. The study, published in Biological Psychiatry: Cognitive Neuroscience and Neuroimaging, sought to tease out whether these difficulties represent a disruption in proactive executive control (engaged and maintained before a cognitively demanding event) or in reactive executive control (engaged as the event occurs).

Using functional magnetic resonance imaging (fMRI), the researchers took brain scans of 141 adolescents and young adults ages 12-22 (64 with autism, 77 neurotypical controls) enrolled in the Cognitive Control in Autism Study. During the scan, the participants completed a task that required them to adapt their behavior.

They were shown a green or red cue, followed by a white arrow (probe) pointing left or right. In half of the trials participants saw a green cue asking them to push a button that matched the direction of the arrow, and in the other half they saw a red cue that asked to push a button that didn’t match. Trial order was randomized across the experiment.


Diagram of the study task (click for larger image)

“Our brains are seemingly hardwired to be able to respond to a probe with a matching action more easily than doing the opposite,” said Andrew Gordon, a postdoctoral scholar in the Department of Psychiatry and Behavioral Sciences and the lead author on the paper.

Participants with autism show a unique approach

Analyses of the brain scans during both the cue and probe phases found that participants with autism showed significantly greater brain activity than control participants during the cue in networks associated with proactive control processes, but on the less cognitively demanding trials – the ones with the matching arrow. On the more demanding trials – when the arrow didn’t match - activity was similar across groups. 

“This suggests that proactive control is not in fact impaired, but that those with autism implement it in a unique – and not necessarily maximally efficient – manner, because they employ proactive control to prepare for the easier versus the harder trials,” said Marjorie Solomon, a professor in the Department of Psychiatry and Behavioral Sciences and the senior author on the paper.

“Previous research suggests that disruption at a neural level may be responsible for behavioral differences. What we actually show is that participants with autism are simply engaging neural control systems differently to those with neurotypical development.”

— Andrew Gordon

The researchers also found that during the arrow probe, connectivity between regions associated with reactive control processes was uniquely enhanced on the more-demanding trials in individuals with autism, but not in neurotypical controls.

The results were a little surprising, said Gordon. “Previous research suggests that disruption at a neural level may be responsible for behavioral differences. What we actually show is that participants with autism are simply engaging neural control systems differently to those with neurotypical development.”

The researchers noted that the results do not explain why the participants with autism engaged in a different, less efficient strategy during the task than the neurotypical participants.

“Our findings suggest that, as in many other areas, those with autism use a unique strategy to complete a task,” said Solomon. “But it does leave open the question of why they exert more control during the easier task, and it may have to do with reductions in cognitive flexibility.”

Solomon and Gordon added that future research would benefit from manipulating the order in which the stimuli are presented.

“These findings stand in contrast to a lot of prior work on this topic,” noted Gordon. “Although no one study can be considered enough evidence to change how we think about executive control in autism, these findings suggest we need to be more nuanced with regard to this subject in the future.”

Coauthors on the study include Marie K. Krug and Rachel Wulff of UC Davis, Matthew V. Elliot of UC Berkeley, Jeremy Hogeveen of the University of New Mexico and Tyler Lesh and Cameron Carter of the Imaging Research Center in Sacramento.

The research was supported by the National Institute of Mental Health Grant No. R01MH10651802

Related stories:

Depression symptoms linked to reduced cognitive control in people with autism

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202103_helping-kids-with-autism-transition-back-to-in-person-school-10-tips Tue, 09 Mar 2021 08:00:00 GMT Helping kids with autism transition back to in-person school: 10 tips <p>Many area schools are making plans to return to in-person instruction. After a year of distance learning, the transition may be tough for families, educators and students. Children with autism may face even greater challenges with the change. Here are resources and tips for easing that transition.</p> Transitions are tough. As many schools make plans to shift from distance learning to in-person instruction, families, students and educators face an adjustment period. That’s especially true for students with autism spectrum disorder, because transitions can be particularly stressful and challenging for them.  

“The pandemic has been disruptive for children across the board,” said Patricia Schetter, a board-certified behavior analyst who coordinates the Autism Education Initiatives for the Center for Excellence in Developmental Disabilities at the UC Davis MIND Institute. “Especially for children with autism and their families, so many aspects of their education have been affected, including access to therapies as well as educational and social interactions.” 

Schetter noted that the pandemic forced everyone to learn new routines and new ways of working, learning and recreating. “Now, there will be a new period of learning, because in-person school won’t look like it did a year ago. There will be masks, distancing and hybrid schedules to get used to,” she explained. 

Since the pandemic began, Schetter’s work has focused largely on supporting families and educators with the adjustment to online learning. Now, parents and teachers are asking for resources and supports to help children with autism return to the classroom. Click here for a handy guide. 

She offers some tips that her team has collected: 

  1. Help them get comfortable again with the building and school grounds before in-person instruction begins. Visit on a weekend day and walk around if possible, helping the student to reacclimate. Another way to do this is to use a social story like this one from Autism Little Learners, which illustrates the changes students may experience, like the teacher wearing a mask or desks being farther apart.
  1. Practice wearing a mask. Many kids will not be used to wearing a mask for hours, and it may be unfamiliar and uncomfortable. Have the student wear one at home for short periods and gradually increase it to get them used to keeping it on for a significant time. Click here to see a social story about wearing masks from the MIND Institute. Or try this handy guide for helping kids get comfortable with masks.
  1. Begin reinstating some of the nighttime routines and morning routines that will need to be in place when school starts. Use visual supports, like photos or checklists, if needed, so children know what the steps of the routine are.
Transitioning back to in-person instruction is an adjustment for educators, families and students.

— Patricia Schetter

  1. Establishing a new school routine is also really important. Setting a schedule and daily expectations is key to helping kids feel safe and secure at school. “Students must be comfortable in order to re-engage and connect, and that will enable them to be ready to learn, noted Schetter. “That will also help teachers recognize their strengths and interests and increase motivation.”
  1. Be patient. There will be a period of acclimation, and educators and therapists will first need to make sure the student is stabilized. “It will be really important not to push too hard, too fast as it might overwhelm and discourage many students as they readjust to being at school,” said Schetter.
  1. Reconnecting with kids and helping them to feel safe and secure at school will be key, and the best way to do that is to establish clear expectations, schedules and routines and to focus on children’s strengths and interests. This will help kids be available to learn, and when their strengths are recognized and their interests are incorporated into learning, they will be more motivated to engage.
  1. Keep your expectations reasonable. “Some kids may require more intensive or individualized instruction to regain skills,” she said. Educators and families should work together to develop an individualized plan that will meet the needs of the child. 
  1. Be open to nontraditional methods for addressing learning loss. “Things like summer school, before or after school interventions, small groups of individualized instruction may all be on the table, so parents should work really closely with their educational teams to determine what the best fit is for their child,” noted Schetter.
  1. Stick to what works. The use of evidence-based practices by teachers and therapists is the best way to help kids regain lost skills and acquire new ones. “Things like visual supports, positive behavior supports and social skills teaching have all been proven to be highly effective,” she said. These Autism Focused Intervention Resources and Modules provide training for educators and parents.
  1. Remember that what works for your child may not work for others. Schetter noted that many kids are benefiting from online learning and may experience less social anxiety at home, while many students with autism benefit more from face-to-face instruction and live social interactions.

Schetter’s team at the California Autism professional training and information network (CAPTAIN) put together an excellent list of resources for educators and families.  

“Families have had to adopt many roles during the pandemic: surrogate teacher, therapist and primary social partners for their kids,” explained Schetter. “As we transition back to in-person instruction, I expect everyone will benefit from the increased understanding and collaboration that distance learning necessitated.”

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202102_photo-buttons-help-ease-kids-fears-of-providers-in-covid-19-protective-gear Thu, 11 Feb 2021 08:00:00 GMT Photo buttons help ease kids’ fears of providers in COVID-19 protective gear <p>Masks, face shields and other personal protective gear that health care providers must wear during the pandemic can intimidate some pediatric patients. Hoping to change that, Veronica Tuss, a child life specialist at the UC Davis MIND Institute, creates colorful photo buttons so that providers can share a smile with their patients while staying safe.</p> Face masks are a regular part of medical visits now at UC Davis Health, and they are critical for protecting ourselves and those around us from COVID-19.

But they also hide our smiles.

The necessary protective gear, which also includes face shields and gowns, can be scary for kids. That makes it tough for pediatric providers to connect with their patients.

“Even as an adult I can understand how it looks very intimidating,” said Veronica Tuss, a child life specialist at the UC Davis MIND Institute, which specializes in neurodevelopmental conditions.

“I noticed that a lot of our patients, even if they had met us previously, would walk in and they were immediately taken aback. It’s challenging, when you want to comfort them, but you’re the trigger for the child getting upset because you have on a big mask and shield.” she said.

Sharing a smile

Tuss decided to do something about that. She ordered a photo printer and supplies and began creating a colorful button featuring a large photo of each MIND Institute provider. They pin their own picture-buttons on their clothing or white coat as a way of sharing a smile when introducing themselves.

And it’s working.

“As soon as we started wearing them, you’d still have the initial hesitancy, but when I point to the button and say, ‘Hi, this is me, I’m Veronica, this is what I do,’ it just brought back that personal aspect to our care. It’s made a huge difference.”


Child life specialist Veronica Tuss said the PPE she and other providers wear can intimidate pediatric patients.

Most MIND Institute providers now wear their buttons whenever they’re interacting with patients, Tuss said.

“The buttons have been so helpful to put kids at ease and to reassure them that that there is a person under the PPE [personal protective equipment],” said Mary Jacena Leigh, a developmental-behavioral pediatrician at the MIND Institute. “Even for patients whom I have seen before, the buttons can help them recognize me to decrease any stranger anxiety. They are a wonderful tool to show our patients and families a friendly face as they can’t see that I’m smiling under the mask,” she said.

Expanding the photo button program

Before long, providers in other departments were asking Tuss if they, too, could have a photo button. She has now created more than 200 of them, mainly for the MIND Institute and the Department of Pediatrics. She creates, edits, prints, and cuts out each one herself.

Mitch Ratanasen, a pediatrician at UC Davis Children’s Hospital and health sciences assistant clinical professor, was intrigued when he noticed that a resident who had done a rotation at the MIND Institute wore a photo button. “I reached out to Veronica to see if she would be able to make them for our pediatric residents and department faculty and she quickly said ‘of course,’” said Ratanasen. 

He said the buttons have been very effective because they help children visualize what their providers look like without the protective gear. “They have been extremely helpful in reducing patient and family discomfort during the PPE era, and it adds a more personal touch for families who are seeing lots of different health care providers and staff, sometimes for the first time,” he explained. 

Improving care

“As soon as we started wearing them, you’d still have the initial hesitancy, but when I point to the button and say, ‘Hi, this is me, I’m Veronica, this is what I do,’ it just brought back that personal aspect to our care. It’s made a huge difference.”

— Veronica Tuss, child life specialist

It isn’t just comfort and connection that the buttons have facilitated; they’ve also affected the quality of care. Tuss pointed out that at the MIND Institute, providers are often assessing a child for a neurodevelopmental condition, and that’s difficult when the child is not at ease.

Tuss said physicians, nurses, research coordinators, psychologists, medical assistants, phlebotomy technicians, hospitalists, social workers, residents and others wear the buttons. And of course, child life specialists like herself, who often assist with procedures, such as helping a child feel more comfortable during a blood draw. 

“Our role in child life is to be that connective piece between providers and patients and to provide comfort to the child to help support and empower them through procedures, and with our PPE, they were afraid of us,” she said. Now we’ve been able to remove this barrier that is physically on our face and reestablish these connections.”

About the MIND Institute

At the UC Davis MIND Institute, world-renowned scientists engage in collaborative, interdisciplinary research to find the causes of and develop treatments for the disabilities that can be associated with autism, attention-deficit/hyperactivity disorder (ADHD), fragile X syndrome, 22q11.2 deletion syndrome, Down syndrome and other neurodevelopmental disorders. For more information, visit mindinstitute.ucdavis.edu.

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202102_programa-de-teleconferencias-sobre-el-autismo-ahora-disponible-en-espaol-video Fri, 05 Feb 2021 08:00:00 GMT Programa de teleconferencias sobre el autismo ahora disponible en español (video) <p>Ahora el Instituto MIND de UC Davis est&aacute; ofreciendo en espa&ntilde;ol su programa interactivo de teleconferencias, conocido como ECHO. El objetivo es alcanzar a m&aacute;s proveedores de salud, en particular aquellos de habla hispana y en Am&eacute;rica Latina.</p>
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ECHO Autism, el programa interactivo de teleconferencias del Instituto MIND de UC Davis para proveedores que atienden a individuos con autismo, está expandiendo para ofrecer un programa en español, ECHO Autismo.

“Hay una enorme necesidad entre los proveedores para profundizar su conocimiento sobre el autismo y por ello estamos trasladando ese conocimiento en lugar de trasladar a las familias y los niños; nuestra visión es mejorar el cuidado de niños con autismo en todas partes”, explicó Bibiana Restrepo, pediatra de conducta y desarrollo y profesora clínica asistente en el Departamento de Pediatría.

Restrepo, que también es miembro del cuerpo docente del Instituto MIND, ha sido parte del equipo de ECHO Autismo desde que se lanzó en 2018. Dijo que el grupo tiene participantes de la región de Sacramento y de distintos lugares del país y el mundo. La meta es crear una conexión más sólida con los proveedores en zonas rurales y marginales que están comprometidos a mejorar y expandir el tratamiento del autismo. Agregó que la idea de crear un programa en español surgió de ver a proveedores de ECHO participando de las sesiones desde distintos países latinoamericanos.

Un equipo colaborativo e interdisciplinario


El equipo de ECHO Autismo incluye a pediatras especializados en desarrollo y conducta, psicólogos, trabajadores sociales y otros expertos en autismo.

ECHO Autismo involucra a un grupo de 20 a 25 proveedores que se reúnen mensualmente vía teléfonos con camara, tabletas y computadoras en una plataforma de teleconferencias para conectarse con el equipo ECHO Autismo del Instituto MIND.  Un equipo interdisciplinario de expertos lidera las sesiones, incluyendo pediatras especializados en conducta y desarrollo, psicólogos, especialistas en conducta, trabajadores sociales y otros. El concepto principal es ofrecer prácticas basadas en evidencia para tratar el autismo y los problemas asociados a la condición.

Las reuniones empiezan con una discusión sobre tópicos relevantes a los proveedores que atienden a individuos con autismo, y luego uno de los médicos presenta un caso para recibir del equipo recomendaciones de tratamiento. (El paciente del caso presentado no es identificado para proteger su información privada de salud).

 “ECHO Autismo usa el aprendizaje en base a casos”, dijo Retrepo. “Está centrado en el aprendiz con una intensa interacción entre los participantes. Discutimos ideas juntos mientras profundizamos nuestro conocimiento y creamos una comunidad con otros proveedores. Hacia el final de las discusiones, el profesional que presenta el caso tiene grandes recomendaciones individualizadas y los niños y sus familias reciben la mejor atención de parte del proveedor en quien confían”.

Restrepo dijo que las discusiones también cubren muchas condiciones médicas y mentales que comúnmente ocurren simultáneamente en los niños con autismo, tal como problemas de sueño y gastrointestinales, y ansiedad.

“A veces cuidar a un individuo con autismo puede ser complejo, de manera que es muy útil cuando todos aportan sus conocimientos. Estamos profundizando nuestro conocimiento, pero también generando ideas sobre cómo atender a un paciente en particular con un enfoque multidisciplinario y centrado en la familia”, dijo Restrepo.

Las sesiones en español comienzan el 11 de febrero y durarán seis meses. El programa requiere que los interesados se registren y se comprometan a participar en por lo menos la mitad de las sesiones.

“Después de ser parte de ECHO por algún tiempo, puedo decir que no son sólo los participantes quienes se benefician”, dijo Restrepo. El equipo en el Instituto MIND aprende de cada uno de los participantes y de sus casos en un ambiente seguro de aprendizaje. Creamos una comunidad con otros profesionales en lugares remotos y tenemos un impacto positivo en la vida de las personas con autismo.  ¡Es muy gratificante”!

Para registrarse en “ECHO Autismo,” conéctese con hs-echoautism@ucdavis.edu

Restrepo y otros miembros del equipo ECHO Autismo del Instituto MIND de UC Davis organizarán en evento en vivo en Facebook en español el 5 de febrero a las 12 p.m. para hablar sobre la expansión del programa.

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202102_fragile-x-premutation-registry-launches-internationally- Wed, 03 Feb 2021 08:00:00 GMT Fragile X premutation registry launches internationally (video) <p>The UC Davis MIND Institute and the National Fragile X Foundation have launched an international registry of people carrying the fragile X premutation. The goal is to facilitate and encourage research about the genetic condition to improve understanding and treatment.</p>
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The UC Davis MIND Institute and the National Fragile X Foundation are working to encourage and accelerate research about the genetic condition with a new registry. The International Fragile X Premutation Registry is welcoming participants worldwide who are interested in taking part in research studies.

“The registry was created to facilitate and encourage fragile X premutation research around the world, including future medication and non-medication treatment and intervention studies that could positively impact quality of life,” said Linda Sorensen, executive director of the National Fragile X Foundation.  

The goal is to build a contact list containing a large, diverse group of people interested in contributing to research by taking part in clinical trials and other studies. 

David Hessl
Psychologist and clinical professor David Hessl is leading registry efforts for the MIND Institute

“This aim is especially important for premutation carriers with the neurodegenerative disease fragile X-associated tremor/ataxia syndrome (FXTAS),” said David Hessl, a psychologist and clinical professor in the UC Davis Department of Psychiatry and Behavioral Sciences who is leading registry efforts for the MIND Institute. “FXTAS, which is characterized by progressive loss of motor function and balance, as well as cognitive changes, currently has no cure or specific treatment.”

What is fragile X syndrome?

Fragile X syndrome (FXS) is a genetic condition. The “X” refers to the X chromosome, where the altered gene (fragile X mental retardation 1, or FMR1) that causes it is located. Symptoms vary, but males are more severely affected, and are more likely to have intellectual disabilities and autism symptoms and distinguishing physical characteristics like long faces, larger ears, unusually flexible fingers and flat feet. People with FXS also tend to be very social and friendly and have strong visual or long-term memory.

FXS affects approximately 1 in 3,600 to 4,000 males and 1 in 4,000 to 6,000 females. The UC Davis MIND Institute’s Fragile X Research and Treatment Center is a world leader in the field.

What is a premutation carrier?

A premutation carrier also has an altered form of the FMR1 gene, through the mutation is smaller than in those with fragile X syndrome. Carriers may pass on an expanded mutation to a child or grandchild, causing fragile X syndrome. Some carriers also develop fragile X-associated disorders. Those include primary ovarian insufficiency, which affects fertility (FXPOI) and FXTAS, affecting mostly males over age 50. FXTAS was discovered at the MIND Institute in 2001.

“When there are new treatments developed for FXTAS and other premutation-associated conditions, we need to be prepared and we’d like people from many backgrounds to have an opportunity to benefit, or to participate in a clinical trial if they’re eligible and interested.”

— David Hessl

In contrast to the relative rarity of fragile X syndrome, an estimated 1 in 151 females and 1 in 468 men are premutation carriers.

“To date, there are no treatments to cure or reverse premutation-linked conditions like FXTAS and FXPOI,” said Sorensen. This registry can expedite treatment development by centralizing information for individuals who are interested in patriating in future research.”

How will the registry work?

Anyone 18 or older who is a premutation carrier, anywhere in the world, is encouraged to sign up for the registry. Family members of those affected by fragile X, but who are not premutation carriers themselves are also encouraged to sign up, to serve as research control participants. If individuals are unsure if they are a carrier, but it’s a possibility given the family pattern, they may also register and indicate that they haven’t been tested yet.

The registry enrollment link is on the National Fragile X Foundation website, and the database will be managed by UC Davis, where it will be protected in compliance with U.S. and European patient privacy regulations.

Researchers interested in recruiting participants from the registry will notify the registry team and advisory committee, which includes experts and fragile X family representatives, and submit a formal application for review. If approved, the registry team will notify registry participants about the research. There is no obligation to take part in any studies. Researchers will not be given registrants’ information.

A source of knowledge and connection

There are plans to periodically update registry participants about the latest research that may be of interest.

“We are also creating a reliable source for information about the premutation based on the most recent research in our field, and a source of connection for carriers and their families,” said Hessl. “We’re planning a newsletter for registrants at least once a year, and I’m hoping that these communications and sharing our knowledge will help build community and hope for future interventions.”

A large group of fragile X experts has worked to create the registry. In addition to the MIND Institute and the National Fragile X Foundation, there are researchers and clinicians from the University of Colorado, the University of Michigan, Rush University, Emory University, RTI International, the Fragile X Association of Australia, the Fragile X Alliance Inc., the Walton Centre in the UK and the Congenial Malformations and Dysmorphology, Universidad Del Valle, in Colombia.

“Knowledge is power, and this registry is a great first step to contribute to our knowledge base,” said Sorensen.

Enroll in the International Fragile X Premutation Registry.

Current fragile X-related studies at the MIND Institute

Related stories:

Behavioral intervention, not lovastatin, improves language skills in youth with fragile X
Fragile X research icon empowers hundreds of women as dedicated mentor
Experimental drug improves eye gaze behavior in fragile X syndrome
Computer-based memory games may benefit people with fragile X syndrome
Unexpected spectrum of mental illnesses found in patients with rare genetic disorder
Five language outcome measures evaluated for intellectual disabilities studies
A big, big step  

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202102_virtual-autism-teleconferencing-program-for-providers-now-offered-in-spanish Tue, 02 Feb 2021 08:00:00 GMT Virtual autism teleconferencing program for providers now offered in Spanish (video) <p>The UC Davis MIND Institute is now offering its interactive autism teleconferencing program, known as ECHO, in Spanish. The goal is to reach more health care providers, particularly Spanish-speaking professionals and those in Latin America.</p>
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ECHO Autism, the UC Davis MIND Institute’s interactive teleconferencing program for providers caring for people with autism, is expanding to offer a Spanish language program, ECHO Autismo.

“There is a huge need for providers to increase expertise in autism, so we are moving knowledge, instead of moving families and children, and we envision improving autism care for children everywhere,” explained Bibiana Restrepo, a developmental-behavioral pediatrician and assistant clinical professor in the Department of Pediatrics.

Restrepo, who’s also a MIND Institute faculty member, has been part of the ECHO Autism team since it launched in 2018. She said the group has participants from the Sacramento region, across the U.S. and around the globe. The goal is to develop a stronger connection with providers in underserved and rural areas who are committed to improving and enhancing autism care. She said the idea to create a program in Spanish came from ECHO participants who log in to the sessions from Latin American countries.


The ECHO Autismo team includes developmental and behavioral pediatricians, psychologists, social workers and others who specialize in autism

A collaborative, multidisciplinary team

ECHO Autism involves a group of 20 to 25 providers who gather monthly over smartphones, tablets and computers via a teleconferencing platform to connect with the MIND Institute ECHO Autism team. A multidisciplinary team of experts leads the sessions, including developmental and behavioral pediatricians, psychologists, behavioral specialists, social workers and others. The core concept is providing evidence-based practices for treating autism and associated conditions.

The meetings start with a discussion of topics relevant to providers caring for people with autism, then one of the practitioners presents a patient case to get treatment recommendations from the team. (The patient is not identified to protect his or her private health information.)

“ECHO Autism uses case-based learning,” said Restrepo. “It’s learner-centered with intense interaction between participants. We brainstorm together, while increasing our knowledge and building community with other providers. By the end of the discussion, the professional presenting the case has great individualized recommendations and children and their families receive the best care from their trusted provider.”

Restrepo noted that the discussions also cover many of the medical and mental health conditions that commonly co-occur in children with autism, such as sleep or gastrointestinal issues and anxiety.

“Sometimes caring for an autistic individual can be complex, so when everyone brings their different expertise, it’s very helpful. We’re increasing our knowledge, but also coming up with ideas about how to serve a particular patient in a multidisciplinary and family-centered approach,” she said.

The Spanish sessions begin Feb. 11 and will run for six months. Registration is required, as is a commitment to attend at least half of the sessions.

“After taking part in ECHO for quite a while now, I can tell you that it’s not just the participants who benefit. The team at the MIND Institute learns from providers while implementing best practices of care for every single case that we discuss because every single child is so unique. It’s very rewarding!”

— Bibiana Restrepo

“After taking part in ECHO for quite a while now, I can tell you that it’s not just the participants who benefit,” Restrepo said. “The team at the MIND Institute learns from every single participant and their unique cases in a safe learning environment. We build community with other practitioners in remote locations and we make a positive impact on the lives of autistic individuals. It’s very rewarding!”

To register for “ECHO Autismo,” email hs-echoautism@ucdavis.edu

Restrepo and other members of the UC Davis MIND Institute’s “ECHO Autismo” team will be hosting a Spanish-language Facebook LIVE event Feb. 5 at noon to discuss the expanded program.

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202101_biomarkers-in-mothers-plasma-predict-a-type-of-autism-in-offspring-with-100-accuracy Mon, 25 Jan 2021 08:00:00 GMT Biomarkers in mother’s plasma could aid in early autism diagnosis and intervention <p>UC Davis MIND Institute researchers used machine learning to crunch 10,000 autoantibody pattern combinations to identify maternal biomarkers associated with a sub-type of autism. The findings have implications for early diagnosis and intervention.</p> Using machine learning, researchers at the UC Davis MIND Institute have identified several patterns of maternal autoantibodies highly associated with the diagnosis and severity of autism. Their study, published Jan. 22 in Molecular Psychiatry specifically focused on maternal autoantibody-related autism spectrum disorder (MAR ASD), a condition accounting for around 20% of all autism cases.

“The implications from this study are tremendous,” said Judy Van de Water, a professor of rheumatology, allergy and clinical immunology at UC Davis and the lead author of the study. “It’s the first time that machine learning has been used to identify with 100% accuracy MAR ASD-specific patterns as potential biomarkers of ASD risk.”

Autoantibodies are immune proteins that attack a person’s own tissues. Previously, Van de Water  found that a pregnant mother’s autoantibodies can react with her growing fetus’ brain and alter its development.

Machine learning identifies patterns indicating likelihood and severity of autism

The research team obtained plasma samples from mothers enrolled in the CHARGE study. They analyzed the samples from 450 mothers of children with autism and 342 mothers of typically developing children, also from CHARGE, to detect reactivity to eight different proteins that are abundant in fetal brain. They then used a machine learning algorithm to determine which autoantibody patterns were specifically associated with a diagnosis of ASD.

The researchers created and validated a test to identify ASD-specific maternal autoantibody patterns of reactivity against eight proteins highly expressed in the developing brain.

“The big deal about this particular study is that we created a new, very translatable test for future clinical use,” said Van de Water.  This simple maternal blood test uses an ELISA (Enzyme-Linked-ImmunoSorbent Assay) platform, which is very quick and accurate.   

The machine learning program crunched roughly 10,000 patterns and identified three top patterns associated with MAR ASD: CRMP1+GDA, CRMP1+CRMP2 and NSE+STIP1.


Judy Van de Water

“For example, if the mother has autoantibodies to CRIMP1 and GDA (the most common pattern), her odds of having a child with autism is 31 times greater than the general population, based on this current dataset. That’s huge,” said Van de Water. “There’s very little out there that is going to give you that type of risk assessment.”

Researchers also found that reactivity to CRMP1 in any of the top patterns significantly increases the odds of a child having more severe autism.

Future implications

Van de Water notes that with these maternal biomarkers, there are possibilities for very early diagnosis of MAR autism and more effective behavioral intervention. The study opens the door for more research on potential pre-conception testing, particularly useful for high-risk women older than 35 or who have already given birth to a child with autism.

“We can envision that a woman could have a blood test for these antibodies prior to getting pregnant. If she had them, she’d know she would be at very high risk of having a child with autism. If not, she has a 43% lower chance of having a child with autism as MAR autism is ruled out,” Van de Water said.

Van de Water is currently researching the pathologic effects of maternal autoantibodies using animal models. “We will also use these animal models to develop therapeutic strategies to block the maternal autoantibodies from the fetus,” said Van de Water.

“This study is a big deal in terms of early risk assessment for autism, and we’re hoping that this technology will become something that will be clinically useful in the future.”


First author on the study is Alexandra Ramirez-Celis, with co-authors Joseph Schauer and Miriam Nuño from UC Davis, and Nima Aghaeepour and Martin Becker from Stanford University.

Funding for the study was provided by the NIEHS Center for Children’s Environmental Health and Environmental Protection Agency (EPA) grants (2P01ES011269-11, 83543201), the NIEHS-funded CHARGE study (R01ES015359), the NICHD-funded IDDRC 054 (U54HD079125), and Consejo Nacional de Ciencia y Tecnologia (CONACYT- UC MEXUS) Doctoral Fellowships, and NIH grant R35 GM138353.

Related Stories

Big brains and white matter: clues about autism subtypes

Cord blood DNA may hold clues for early ASD diagnosis and intervention

GI symptoms linked to behavioral problems in children - especially those with autism

Autism severity can change substantially in early childhood 

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202101_mind-institute-and-psychiatry-researcher-recognized-with-early-career-honor- Mon, 11 Jan 2021 08:00:00 GMT MIND Institute and psychiatry researcher receives ‘early career’ honor <p>UC Davis&rsquo; Angela John Thurman has received the Early Career Award from the American Association on Intellectual and Developmental Disabilities. The honor recognizes her considerable research contributions in the development of language, cognition and behavior.</p> Angela John Thurman, associate professor in the Department of Psychiatry and Behavioral Sciences, has been honored with the highly competitive Early Career Award from the American Association on Intellectual and Developmental Disabilities (AAIDD). 

The award, given to just one person annually, recognizes contributions to or achievements in the field of intellectual and developmental disabilities by an individual in the early stages of their career, according to the AAIDD. 

“There are many researchers who are doing great science, so to be honest, I was very surprised,” said Thurman, who is also a MIND Institute faculty member.

Thurman’s coworkers are not the least bit surprised.

They know her as a rising star since she published her first paper as an undergraduate in 2005. Thurman, whose research is broadly focused on the development of language, cognition and behavior, has authored or coauthored 34 peer-reviewed journal articles and 11 chapters in edited volumes. She’s also made over 100 presentations at scientific and professional meetings, and has an extraordinary record of securing funding from the National Institutes of Health.

“Dr. Thurman is a leader in the behavioral science of intellectual and developmental disabilities, with achievements and contributions exceeding any scholar of her generation,” said Leonard Abbeduto, who nominated Thurman for the award and is the director of the MIND Institute.

“Her research is advancing knowledge, improving treatments, and changing the course of scientific inquiry,” he said.

A ‘happy accident’ leads to a life’s passion

Thurman was working at the Autism and Developmental Disabilities Clinic of JFK Partners at the University of Colorado Medical Center as an 18-year-old sophomore when she found her life’s passion. She was sorting mail and making photocopies when she met Sally Rogers (now a UC Davis Department of Psychiatry and Behavioral Sciences emeritus faculty member), who welcomed her into her lab. And there she stayed, until leaving for graduate school a few years later.

I appreciate the acknowledgement that the work we’re doing is meaningful. I hope our families feel that their efforts and interests are being supported and validated as well.”

— Angela John Thurman

“I was sort of raised in this field,” Thurman said. “That early experience, and the mentorship I received throughout my training, really helped me see my interest and passion for this area.”

Thurman’s research has spanned numerous conditions, including autism spectrum disorder, fragile X syndrome and Down syndrome.

She describes the main thread of her work as understanding development across different neurodevelopmental disorders. “I’ve focused my intention on trying to help clarify similarities and differences in development within and across multiple conditions, with the hope that it will help us understand when – and for whom – different interventions are useful,” she explained. 

As for the award, Thurman said she shares it with the many families who give of their time by participating in research.

“It’s motivation to continue doing what we’re doing, and I appreciate the acknowledgement that the work we’re doing is meaningful. I hope our families feel that their efforts and interests are being supported and validated as well,” she said.

“I’m also lucky to be at a supportive university like UC Davis, and the MIND Institute is an amazing place to be a junior scientist because we have such a collaborative atmosphere.”

About AAIDD

Since 1876, the American Association on Intellectual and Developmental Disabilities (AAIDD) has been providing worldwide leadership in the field of intellectual and developmental disabilities. AAIDD is the oldest and largest interdisciplinary organization of professionals and others concerned about intellectual and developmental disabilities, with over 5,000 members in 55 countries.

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202012_big-brains-and-white-matter-new-clues-about-autism-subtypes Thu, 17 Dec 2020 08:00:00 GMT Big brains and white matter: New clues about autism subtypes <p>Researchers found that a long-accepted theory about brain size in some children with autism may not be true. In a separate study, they linked development of white matter with changes in autism symptom severity.</p>
This video is best viewed in Chrome or Firefox.

Two groundbreaking studies at the UC Davis MIND Institute provide clues about possible types of autism linked to brain structure, including size and white matter growth.

The research is based on brain scans taken over many years as part of the Autism Phenome Project (APP) and Girls with Autism, Imaging of Neurodevelopment (GAIN) studies. It shows the value of longitudinal studies that follow the same children from diagnosis into adolescence.


The researchers tracked brain growth and structure in hundreds of children from age 3 to age 12

“There is no other single site data set like ours anywhere,” said Christine Wu Nordahl, associate professor in the Department of Psychiatry and Behavioral Sciences, MIND Institute faculty member and co-senior author on both papers. “In one of the studies we have over 1,000 MRI scans from 400 kids, which is unheard of. It’s been 15 years of work to get here.”

Big brains: An autism subtype?

In the first study, published in Biological Psychiatry, the researchers used magnetic resonance imaging (MRI) to track brain size (volume) in 294 children with autism and 135 children without autism between the ages of 3 and 12. In children with autism, they found evidence of larger brain size relative to height - or disproportionate megalencephaly - a subtype that has been linked to higher rates of intellectual disability and poorer overall prognosis.

Previous cross-sectional research had found that children with autism have larger brains at early ages, but no evidence of larger brains in later childhood. The widely accepted theory is that these brains “normalized” or shrank as the children grew up.

The MIND Institute study found that wasn’t the case. The children who had bigger brains at age 3 still had bigger brains at age 12. Why? Unlike most research, which studies different individuals at different time points, this research studied the same children longitudinally, or over time.

Also, unlike most other studies, this one includes children with significant intellectual disabilities. These were the children who tended to have the “big brain” form of autism.

David Amaral, co-senior author on both studies, suggested that the difference between this and previous research was that children with intellectual disability were left out of previous cross-sectional studies focused on older children.


David Amaral

“Bigger brain size in autism has been linked to lower IQ, and children with intellectual disabilities are harder to scan as they get older,” said Amaral, a distinguished professor of psychiatry and behavioral sciences and MIND Institute faculty member. “It’s a matter of sampling bias and the previous “dogma” appears to be an artefact of who got scanned when,” he explained.

Children under age 5 can be scanned while they’re asleep, but Nordahl and her team have created unique, innovative protocols that allow researchers to more easily scan older children with intellectual disabilities while they’re awake.

“It’s so critical that we include those aspects of the autism spectrum that most impact quality of life, such as intellectual disability, anxiety and verbal functioning.” said Joshua Lee, postdoctoral scholar at the MIND Institute and the lead author on the study. “It’s important to capture everyone who has autism, not just the ones who are easiest to get images from.” 

White matter: Connecting the clinical dots

The second study, also published in Biological Psychiatry, linked changes in the brain’s white matter growth with autism traits in some children.

The researchers used a type of MRI scan called diffusion-weighted imaging, which allowed them to look at white matter regions, or tracts, in the brain. White matter provides the structural connections in the brain, allowing different regions to communicate with each other.

The study included 125 children with autism and 69 typically developing children who served as controls, between the ages of 2.5 and 7.

The researchers found that the development of the white matter tracts in the brain was linked to changes in autism symptom severity. They observed slower development in children whose symptom severity increased over time, and faster development in those with decreased severity over time.

Christine Nordahl and David Amaral
Innovative Brain Scan Methods

The Autism Phenome Project and Girls with Autism, Imaging of Neurodevelopment studies rely on MRI scans of the same children – both with and without autism - over many years in order to track brain development. Scanning the brain of a young child is less challenging; it’s done while they’re asleep. But after about age 5, things change, especially for children with more severe intellectual disability.

“If you take a nonspeaking child with intellectual disability, it’s still fairly manageable to get them scanned when they’re sleeping, but as they get older and bigger, scanning during sleep gets really tricky,” said Christine Wu Nordahl, MIND Institute faculty member and neuroimaging expert. “We had to develop brand new methods to scan kids with lower IQ and verbal skills while they were awake.”

Nordahl and other MIND Institute researchers enlisted the help of behavior analysts - those doing autism therapy – and broke down the MRI process into many sections, starting with entering the building, to make it less scary.

“We use reinforcements specifically tailored to each child,” Nordahl said. “We talk to parents ahead of time about what motivates their child, which could be anything from pistachios to a cartoon character, and we use those to make the child more comfortable.”

Nordahl’s team uses a mock MRI machine that children can try out before their actual scans. When the child is in the MRI machine, they are also able to watch a movie or a show, and utilize weighted blankets, if desired.  

“It’s very challenging to do this, but it’s worth it to ensure that our research includes the full spectrum of children with autism,” Nordahl said.

“From a biological standpoint, this emphasizes the role of white matter development in autism and autism symptoms,” said Derek Sayre Andrews, postdoctoral scholar at the MIND Institute and lead author on the paper. “We hope that in the future, measurements like this can identify children who would benefit from more intensive intervention – and serve as a marker to determine the effectiveness of an intervention for a particular child,” he said. 

Changes in autism severity over time

The white matter research builds on a previous MIND Institute study, which found that while many children experience fairly stable levels of autism symptoms throughout childhood, a significant portion can be expected to increase or decrease in their symptom severity over time.

“This new analysis provides an important clue about the brain mechanism that may be involved in some of these changes,” said Amaral.

Studying sex differences

The studies are unusual not only because they include children with severe intellectual disability, but also because they include a larger number of girls, who tend to be under-represented in autism research.

“For the first time, we are able to have a large enough sample of girls, where we are able to evaluate their brain trajectories separate from boys to see how they’re different,” said Nordahl. “For example, we don’t see the big brain subtype as frequently in girls, but we do see subtle differences in how autistic girls’ brains are growing.”

Nordahl, who has also studied the role amygdala size may play in psychiatric challenges for young girls, noted that the MIND Institute’s longitudinal data set is likely to play a key role in many future studies about sex differences in autism.

“Collectively, I believe these studies are so important because they get us closer to a point where we can use our understanding of the underlying biology of autism to directly improve the quality of life for individuals in the autistic community,” Andrews said. “And that really is the ultimate goal of our research.”


Co-authors on “Longitudinal Evaluation of Cerebral Growth Across Childhood in Boys and Girls with Autism Spectrum Disorder” include Sally Ozonoff, Marjorie Solomon, Sally J. Rogers and Derek Sayre Andrews.

Funding for this study was provided by the National Institute of Mental Health (R01MH104438, R01MH103284, R01MH103371); the UC Davis MIND Institute Intellectual and Developmental Disabilities Research Center (U54HD079125); and Autism Center of Excellence (P50HD093079).

doi: https://doi.org/10.1016/ j.biopsych.2020.10.014


Co-authors on “A Longitudinal Study of White Matter Development in Relation to Changes in Autism Severity Across Early Childhood” include Joshua K. Lee, Danielle Jenine Harvey, Einat Waizbard-Bartov, Marjorie Solomon and Sally J. Rogers

Funding for this study was provided by the National Institute of Mental Health (R01MH104438 R01MH103284, R01MH103371). This project was also supported by the MIND Institute Intellectual and Developmental Disabilities Research Center (U54HD079125) and the MIND Institute Autism Research Training Program (T32MH073124).

doi: https://doi.org/10.1016/j.biopsych.2020.10.013.

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202012_gestational-age-linked-to-adhd-in-children-with-down-syndrome Fri, 04 Dec 2020 08:00:00 GMT Gestational age linked to ADHD in children with Down syndrome <p>A new study by the UC Davis MIND Institute finds a connection between gestational age and ADHD in children with Down syndrome. An earlier gestational age is linked to higher ADHD symptoms later in childhood.</p> A new study by the UC Davis MIND Institute finds a connection between gestational age and attention deficit/hyperactivity disorder (ADHD) symptoms in children with Down syndrome. The research, published in Scientific Reports, focused on children born at 35 weeks gestation or older. It found that earlier gestational age was linked to increased ADHD symptoms later in childhood. Gestational age is the length of time a fetus has developed since the beginning, or gestation, of a pregnancy.  

“Despite growing evidence that gestational age predicts later symptoms of ADHD in the general population, this hasn’t been studied in children with Down syndrome,” said Laura del Hoyo Soriano, neuropsychologist and postdoctoral scholar in the Department of Psychiatry and Behavioral Sciences and lead author on the study. “That makes this study meaningful and an important first step to understanding factors related to ADHD symptoms in this population.”

The study included 49 boys and 56 girls (6-18 years old) born at least 35 weeks gestation with Down syndrome. The children were part of the Down Syndrome Cognition Project.

The researchers based their study on the children’s medical records and questionnaires filled out by their mothers, incorporating well-established measures for ADHD symptoms and intelligence. They found that an earlier gestational age was associated with more symptoms of ADHD, even after adjusting for the child’s age and cognitive abilities.

Distinguishing ADHD symptoms from intellectual disability linked to Down syndrome

ADHD commonly occurs with Down syndrome. It is generally characterized by inattention, distractibility, poor impulse control and trouble focusing, and it can be difficult to distinguish between symptoms that are due to ADHD and those due to the intellectual disability associated with Down syndrome.

“It’s complicated to determine what is a comorbid diagnosis and what is part of the Down syndrome phenotype. That’s why it is important to study factors associated with ADHD symptoms in people with intellectual disability,” noted del Hoyo Soriano.

She points out that in the study, there was no link between general cognition and ADHD symptoms, reinforcing the separate diagnosis of ADHD.


Laura del Hoyo Soriano

“It is interesting that gestational age is also related to ADHD symptoms in the general population,” said Leonard Abbeduto, a co-author of the study and director of the UC Davis MIND Institute. “So, our findings are consistent with the idea that ADHD is not inherent in Down syndrome, but more likely the result of additional factors.”

In their analysis, the researchers considered many factors such as the participants’ age, sex, cognitive level, family income, and their mother’s education and age at birth. They also completed several analyses to ensure the validity of their results. This included removing children who were taking medication for their ADHD.

ADHD and age

The study suggests that ADHD may present in different ways as individuals age. Younger children with Down syndrome generally showed more ADHD symptoms compared to older ones. This is in line with research done in the general population.

“More attention needs to be paid to the care and follow-up of infants born pre-term, even those between 35 and 39 weeks, and perhaps even more so for those with Down syndrome,” said del Hoyo Soriano. “The implications for early interventions could be significant.”  

Funding for the study came from the LuMind Research Down Syndrome Foundation and NIH grants P50HD103526, P30HD03352 and U54HD090256.

In addition to Laura del Hoyo Soriano and Leonard Abbeduto, co-authors include Taylor Wood of UC Davis and Tracie Rosser, Debra Hamilton and Stephanie Sherman of Emory University.

Article: del Hoyo Soriano, L., Rosser, T., Hamilton, D. et al. Gestational age is related to symptoms of attention-deficit/hyperactivity disorder in late-preterm to full-term children and adolescents with down syndrome. Scientific Reports, doi: https://doi.org/10.1038/s41598-020-77392-5

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202012_lectures-in-spanish-to-educate-physicians-and-researchers-about-neurodevelopmental-disabilities Tue, 01 Dec 2020 08:00:00 GMT Lectures in Spanish to educate physicians and researchers about neurodevelopmental disabilities <p>The UC Davis MIND Institute is creating a new, bi-monthly Spanish-language lecture series about autism, fragile X and other neurodevelopmental disabilities. The effort is aimed at physicians and researchers, particularly those in Latin American countries.</p> The UC Davis MIND Institute’s Verónica Martínez-Cerdeño is on a mission. She sees a critical information shortage and she has a plan to help. 

“There is limited knowledge about autism and other neurodevelopmental disabilities in Latin American countries,” said Martínez-Cerdeño, a professor in the Department of Pathology and Laboratory Medicine. “I decided that I want to improve the lives of these children, by providing doctors and professionals with information about the current state of neurodevelopmental research,” she said. 

Martínez-Cerdeño, a native of Spain, is creating a new virtual Spanish-language lecture series called “Seminars of Excellence in Neurodevelopment Research,” aimed at educating physicians, and researchers. Topics will include how to recognize, diagnose and treat neurodevelopmental disorders such as autism, fragile X syndrome and 22q 11.2 deletion syndrome. 

“I’ve identified the weaknesses. For example, in Colombia, they know more about fragile X and less about autism. In Mexico, they know more about autism and less about fragile X. In Ecuador, they know a little bit about everything, but they need assistance with research,” she explained. 

Families and other members of the public are also welcome to watch the scientific lectures, which will be given via Zoom and include internationally recognized experts from the MIND Institute and around the world. 

Neurologist Manuel F. Casanova (pictured right) will present the first lecture on Thursday, Dec. 10 at 10 a.m., titled “From Bench Discoveries to Clinical Therapy in Autism: Transcranial Magnetic Stimulation.” 

Casanova is the SmartState Endowed Chair in Translational Childhood Neurotherapeutics for the University of South Carolina School of Medicine and the Greenville Health System. He was on the founding board of the National Alliance for Autism Research (now Autism Speaks). He’s served as president of the International Consortium of Autism Institutes and has been recognized with a EUREKA award from the National Institutes of Mental Health for his work in autism therapy. 

Martínez-Cerdeño says, in a way, COVID has made virtual lectures like Casanova’s easier to organize. “Now, everyone, everywhere, knows how to use Zoom, by necessity.”

Most importantly, it extends the reach of the expertise that the MIND Institute offers. 

“The MIND Institute is number one in these areas,” she said. “Our lecture series can fill the knowledge gap and help doctors and researchers pay more attention to autism and neurodevelopmental conditions. We can help doctors learn more about how to help their patients and little by little, people will learn from each other and things will improve.” 

Martínez-Cerdeño points out that California’s large Hispanic population makes the lecture series relevant here as well. 

“Many of them are migrant workers who don’t speak English, and they have kids with autism, too. We need to educate Hispanic doctors about neurodevelopmental disabilities and the way to reach them is in their own language.” 

New lectures will be offered bi-monthly, and Martínez-Cerdeño plans to continue them for years to come. 

You can find Manuel F. Casanova’s talk on Dec. 10 using this link. The lectures will also be posted on the MIND Institute’s You Tube page.

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202011_expanding-diversity-equity-and-inclusion-at-the-uc-davis-mind-institute Fri, 13 Nov 2020 08:00:00 GMT Expanding diversity, equity and inclusion at the UC Davis MIND Institute <p>The UC Davis MIND Institute has created a new committee and a grant program to increase diversity in its faculty and staff, while addressing inequities in access to care. The hope is to strengthen empathy, awareness and equity throughout its programs.</p> If you visit the UC Davis MIND Institute website, you’ll find the following statement:

“The UC Davis MIND Institute condemns the ongoing racism and violence targeting people of color. We are committed to fulfilling our mission to help all families affected by neurodevelopmental challenges and to promote equal access to high-quality health care and education for all members of our community.”

The MIND Institute leadership has always aspired to equal access to high-quality health care, but has recently redoubled its efforts to achieve this.

“We know that there are huge gaps for certain groups of people with disabilities, due to  inequities and barriers that make it hard for families to access care,” said Janice Enriquez, associate clinical professor in behavioral and developmental pediatrics and a MIND Institute faculty member.

Enriquez is chairing a new committee for diversity, equity and inclusion that includes a range of faculty who’ve volunteered for the effort.

“Structural racism is embedded within in all of our societal systems, and it’s really important for us to increase our efforts as an organization – and individually – to combat that and to better understand our patients and reach those who are currently invisible to us,” she added.

The committee’s efforts include:

“It’s been impactful to see how leaders have responded to the racial reckoning. People are stepping up and they’re not just making statements, but also program and policy changes. At the heart of it, that’s what we all need to do.”

— Elizabeth Morgan, doctoral student
UC Davis MIND Institute

  • Staff members trained to facilitate racial healing circles through the Office for Health Equity, Diversity and Inclusion
  • Book clubs involving faculty and staff to discuss and address diversity, equity and inclusion
  • Discussion groups about “isms,” (like racism) with trainees and fellows
  • A strong push for MIND Institute trainees at all levels to understand the social determinants of health and health equity
  • A partnership with the Transformative Justice in Education Center at UC Davis for a series of training sessions, in an effort to address disability at the intersection of multiple cultural identities.

New diversity grant program

A new quarterly grant program is also in place — the MIND Institute Diversity Award. The $1,000 grants support postdoctoral fellows, graduate students, medical students and undergraduates with research projects that address issues of race, ethnicity and culture in the development, identification, care and support of individuals with neurodevelopmental challenges and their families. Postdoctoral fellow Amber Davis and doctoral student Elizabeth Morgan were the first recipients.

“It’s definitely a step in the right direction,” said Morgan, who’s researching the methods that Black parents use to advocate for care for their children with autism, as well as the challenges they face. She’s optimistic about the response to current events.

“It’s been impactful to see how leaders have responded to the racial reckoning. People are stepping up and they’re not just making statements, but also program and policy changes. At the heart of it, that’s what we all need to do.”

Morgan leads a support group for Black parents of children with neurodevelopmental disabilities called Sankofa (which means “go back and fetch it” in the Twi language of Ghana). The group holds culturally relevant training sessions and provides a safe space for parents to be heard.

It’s an example of the sort of listening that the MIND Institute is working to incorporate at every level.

“Our goal is health equity for all people with neurodevelopmental disabilities,” said MIND Institute director Leonard Abbeduto. “That starts with listening and understanding the needs of those in our community who face barriers accessing care. Our research, clinical work and everyday interactions must all reflect that goal.”

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202011_families-enjoy-drive-through-trunk-or-treat-event-at-uc-davis-mind-institute Mon, 02 Nov 2020 08:00:00 GMT Families enjoy drive-through trunk-or-treat event at UC Davis MIND Institute <p>The UC Davis MIND Institute offered patients a drive-through trunk-or-treat experience &mdash; a safe alternative to traditional trick-or-treating during the COVID-19 pandemic.</p>
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About 100 Sacramento-area families stopped by a unique, safe, drive-through trunk-or-treat event at the UC Davis MIND Institute Friday (Oct. 30) evening. The event was socially distanced, and families remained in their vehicles as they drove through the MIND Institute parking lot on the UC Davis Health campus, collecting candy or small toys through their car windows. 

Car trunks were decorated with spider webs, ghosts and more, courtesy of the NorCal Challengers auto enthusiasts, a group that supports many MIND Institute events. Staff members and volunteers in festive costumes handed out candy while wearing masks, face shields and gloves. Volunteers and staff were also screened for COVID-19 symptoms.

“We were thrilled to be able to offer a safe trunk-or-treat option for patients and the public this year,” said Erin Roseborough, a child life specialist who created the Fall Festival several years ago.


MIND Institute staff and volunteers dressed in festive costumes to hand out treats.

Public health officials, including those at UC Davis Health, had urged people to consider alternatives to traditional trick-or-treating this year, due to COVID-19.

The UC Davis MIND Institute is a collaborative international research center, committed to the awareness, understanding, prevention and treatment of the challenges associated with neurodevelopmental disabilities. This free event was open to the public as well as MIND Institute patients.

The Fall Festival is one of several annual Family Time at the MIND events organized by the child life team at the MIND Institute.

“These events are magical, because they remove the normative guidelines about what social events should look like,” said Veronica Tuss, a child life specialist who helped organize the Fall Festival. “No one attending our events ever needs to explain themselves or their child’s behavior or needs. They can just be and have fun, whatever that looks like for them uniquely.”

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202010_cord-blood-dna-can-hold-clues-for-early-asd-diagnosis-and-intervention- Thu, 22 Oct 2020 07:00:00 GMT Cord blood DNA can hold clues for early ASD diagnosis and intervention <p>Specific regions in cord blood DNA can help identify kids who might develop autism.</p> A new study led by UC Davis MIND Institute researchers found a distinct DNA methylation signature in the cord blood of newborns who were eventually diagnosed with autism spectrum disorder (ASD). This signature mark spanned DNA regions and genes linked to early fetal neurodevelopment. The findings may hold clues for early diagnosis and intervention.

“We found evidence that a DNA methylation signature of ASD exists in cord blood with specific regions consistently differentially methylated,” said Janine LaSalle, lead author on the study and professor of microbiology and immunology at UC Davis.

The study published Oct. 14 in Genome Medicine also identified sex-specific epigenomic signatures that support the developmental and sex-biased roots of ASD.

The U.S. Centers for Disease Control and Prevention (CDC) estimates that one in 54 children are diagnosed with ASD, a complex neurological condition linked to genetic and environmental factors. It is much more prevalent in males than females.

The role of the epigenome in DNA functioning

The epigenome is a set of chemical compounds and proteins that tell the DNA what to do. These compounds attach to DNA and modify its function. One such compound is CH3 (known as the methyl group) that could lead to DNA methylation. DNA methylation can change the activity of a DNA segment without changing its sequence. Differentially methylated regions (DMRs) are areas of DNA that have significantly different methylation status. 

The epigenome compounds do not change the DNA sequence but affect how cells use the DNA's instructions. These attachments are sometimes passed on from cell to cell as cells divide. They can also be passed down from one generation to the next. The neonatal epigenome has the potential to reflect past interactions between genetic and environmental factors during early development. They may also influence future health outcomes.

Finding factors in fetal cord blood that might predict autism

The researchers studied the development of 152 children born to mothers enrolled in the MARBLES and EARLI studies. These mothers had at least one older child with autism and were considered at high risk of having another child with ASD. When these children were born, the mothers’ umbilical cord blood samples were preserved for analysis. At 36 months, these children got diagnostic and developmental assessments. Based on these, the researchers grouped the children under “typically developing” (TD) or “with ASD.”

The researchers also analyzed the umbilical cord blood samples taken at birth from the delivering mothers. They performed whole-genome sequencing of these blood samples to identify an epigenomic signature or mark of ASD at birth. They were checking for any patterns of DNA-epigenome binding that could predict future ASD diagnosis.

They split the samples into discovery and replication sets and stratified them by sex. The discovery set included samples from 74 males (39 TD, 35 ASD) and 32 females (17 TD, 15 ASD). The replication set was obtained from 38 males (17 TD, 21 ASD) and eight females (3TD, 5 ASD).

Using the samples in the discovery set, the researchers looked to identify specific regions in the genomes linked to ASD diagnosis. They tested the DNA methylation profiles for DMRs between ASD and TD cord blood samples. They mapped the DMRs to genes and assessed them in gene function, tissue expression, chromosome location and overlap with prior ASD studies. They later compared the results between discovery and replication sets and between males and females.

Cord blood to reveal insights into genes related to ASD

The researchers identified DMRs stratified by sex that discriminated ASD from TD cord blood samples in discovery and replication sets. They found that seven regions in males and 31 in females replicated, and 537 DMR genes in males and 1762 DMR genes in females replicated by gene association. These DMRs identified in cord blood overlapped with binding sites relevant to fetal brain development. They showed brain and embryonic expression and X chromosome location and matched with prior epigenetic studies of ASD.

“Findings from our study provide key insights for early diagnosis and intervention,” LaSalle said. “We were impressed by the ability of cord blood to reveal insights into genes and pathways relevant to the fetal brain.”

The researchers pointed out that these results will require further replication before being used diagnostically. Their study serves as an important proof of principle that the cord blood methylome is informative about future ASD risk.

The co-authors on this study are Charles E. Mordaunt, Julia M. Jianu, Benjamin I. Laufer, Yihui Zhu, Hyeyeon Hwang, Keith W. Dunaway, Sally Ozonoff, Irva Hertz-Picciotto and Rebecca J. Schmidt of UC Davis MIND Institute; Kelly M. Bakulski of University of Michigan, Ann Arbor; Jason I. Feinberg, Heather E. Volk and M. Daniele Fallin of Johns Hopkins University; Kristen Lyall of Drexel University; Lisa A. Croen of Kaiser Permanente Northern California; and Craig J. Newschaffer of Pennsylvania State University.

Article: Mordaunt et al. (2020). Cord blood DNA methylome in newborns later diagnosed with autism spectrum disorder reflects early dysregulation of neurodevelopmental and X-linked genes, Genome Medicine, doi: https://doi.org/10.1186/s13073-020-00785-8

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202010_covid-closures-disproportionately-affecting-those-with-disabilities- Wed, 21 Oct 2020 07:00:00 GMT COVID closures disproportionately affecting those with disabilities <p>The COVID-19 pandemic has disproportionately affected people with intellectual and developmental disabilities because they depend on others for support in their daily lives.</p> COVID-19 has brought hardships for most of us: job losses, sickness, grief, loneliness and more. But for those with intellectual and developmental disabilities, the distress of the pandemic has been acute.

“The big concern is that many individuals with intellectual disabilities rely heavily on other people to support them in their daily activities,” said Leonard Abbeduto, director of the UC Davis MIND Institute and the Intellectual and Developmental Disabilities Research Center (IDDRC).

“They often need people to help them get from place to place, or they’ll have a job coach that assists them or an aide in school who’s supporting them. When all of that is taken away, their world is even more isolated.”

Abbeduto, along with his counterparts at the other IDDRCs in the U.S., co-authored a letter to the American Journal of Psychiatry, arguing that “few are more adversely affected by COVID-19 than individuals with intellectual and developmental disabilities.”

The authors also mention their concern about future budget cuts to services on the local, state and federal levels due to the financial impacts of the pandemic, and the high incidence of other health challenges.

“We know there are high rates of obesity in people with intellectual and developmental disabilities and we know that they may have compromised immune systems, so they really are at a great risk,” noted Abbeduto.

Distance learning and online classes haven’t been an easy transition, either. “They have challenges learning, so it’s difficult to adapt quickly to the new learning model. Plus, they may need help to sit down at a computer and access the lessons,” Abbeduto pointed out.

Telehealth: A great option, but not always enough

Telehealth, or care delivered virtually, has been incredibly successful in many areas. In fact, the MIND Institute was offering telehealth care before the pandemic for families with limited transportation options, and was able to expand it to adapt to COVID-19.

Most initial patient consultations are done virtually now. And telehealth cognitive behavioral therapy for anxiety disorders has been very successful, as well.

“We have found some sorts of interventions that people think may even work better,” said Abbeduto.

One key thing that can’t always be done virtually is an assessment for autism.

“The main instrument for assessing autism requires basically in-person interactions,” said Abbeduto. “To make it even more challenging, wearing a mask can change things. You’re trying to asses a child’s ability to pick up on social cues and masks can sometimes hinder that.”

[ + LARGE VIEW ]

Visiting the UC Davis MIND Institute during COVID Restrictions

Nonetheless, MIND Institute clinicians can confidently make decisions about the appropriateness of an autism diagnosis in most in-person visits. There are only a few cases where children will need to come in again after the COVID-19 threat has passed to get a full, mask-free assessment.

Safe care at the MIND Institute

There are a number of circumstances where an in-person, masked and distanced visit can be more effective than a telehealth encounter.

“I think for some of the treatments, they really do require demonstrating things to parents while they’re there, if they’re going to help with interventions,” said Abbeduto.  “You need real-time, in-person coaching so they can see something physically being demonstrated,” said Abbeduto.

Medication evaluations and adjustments are also usually best in person.

Just like elsewhere at UC Davis Health, the MIND Institute has created a safe environment to care for its patients. All staff and visitors are screened at the door, including a temperature check, and masks are required at all times inside the building – for most patients and for all clinicians. Equipment is regularly and thoroughly cleaned, and social distancing is practiced.

Resources

The MIND Institute has made resources available to all patients, especially those who can’t come in person. One example is the Help is in Your Hands website, a great resource for families who have a child with autism. The free site includes web-based video modules to help parents add simple intervention practices to their everyday routines at home.

The Child Life Program has produced a variety of videos, including yoga classes, slime-making, story time and mask decorating for families to enjoy at home.

The MIND Institute is adapting, like all institutions, to a changed world, and faculty, staff and clinicians are also learning from the COVID-19 experience.

“I think there’s a message here, that we need to try and have multiple paths for treatment and diagnosis,” said Abbeduto. “Hopefully we won’t have another pandemic, but it has highlighted how dependent we are on face-to-face interaction and how dependent people with disabilities are on others for support. We are preparing for the future and looking for ways to strengthen our system of care.”

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202010_for-toddlers-with-autism-more-intervention-hours-are-not-necessarily-better- Mon, 19 Oct 2020 07:00:00 GMT For toddlers with autism, more intervention hours are not necessarily better <p>Two prominent early intervention models for toddlers with autism show a very similar impact, whether delivered at 15-hours or 25-hours per week intensities.</p> A multisite study led by UC Davis Health found that two prominent early intervention models for autism had a similar impact. The researchers compared developmental and symptom improvements in toddlers with autism who received one year of one-on-one intervention sessions using either the Early Intensive Behavioral Intervention (EIBI) or Early Start Denver Model (ESDM). They found that the effect did not differ significantly whether delivered at 15-hours or 25-hours per week.

“When parents receive the first diagnosis, they typically ask: What kind of treatment should I seek and for how many hours per week?” said Sally J. Rogers, professor emeritus of psychiatry and behavioral sciences at the UC Davis MIND Institute and lead author on the study. “As clinicians, we had no data from well-controlled experimental studies to answer these questions. This study is the first to ask these questions experimentally.”

Their study, published in the Journal of the American Academy of Child and Adolescent Psychiatry, found that neither the type of intervention nor the intensity of delivery led to significant differences in the children’s rate of progress.

EIBI and ESDM interventions for autism

The two interventions vary considerably in their delivery style and underlying theories. EIBI is based on applied behavior analysis and uses simple, structured instructions to teach the children. ESDM is naturalistic and based on developmental and behavioral sciences with an interactive style embedded in everyday activities, both play and typical routines.

Previous studies have documented that both treatment types can result in significant child gains in language understanding and use, learning rates, and cognitive and adaptive skills. However, recommendations for a specific number of hours per week of treatment have been based on assumptions rather than high-quality experimental evidence.

“We designed the trial to provide objective answers about the effect of initial child characteristics, treatment styles and treatment intensities on the child’s progress over time,” Rogers said. “We assessed this progress by measuring key developmental and symptom indicators.”

Researchers enrolled 87 toddlers with autism (between the ages of 12 and 30 months) from three university sites. Based on their age and development level, the children were randomly assigned to one of four intervention groups: 15 or 25 hours of ESDM; 15 or 25 hours of EIBI.

The researchers delivered one year of one-on-one interventions in homes and childcare settings. They also provided caregiver coaching to the families through two 1.5-hour sessions per month. According to Rogers, the ESDM and EIBI treatments were delivered at the highest quality.

“Therapists followed the treatment manuals and maintained high fidelity to the principles of each treatment. They also received frequent supervision and coached parents to use the interventions and to generalize child skills from therapy into everyday activities at home and in the community,” Rogers said.

The children received four clinic assessments from the time of enrollment, at six-month intervals. Therapists assessed progress daily and updated the intervention frequently to meet children’s changing developmental and behavioral needs.

More intervention hours not necessarily better

The researchers found that neither style nor intensity of intervention had a differing effect overall on the study’s four outcome measures: children’s progress in receptive language, expressive communication, nonverbal ability and autism symptom change. They also found that the treatment providers in both models used the models flexibly to meet individual children’s needs. Both models tended to provide greater structure and practice for children who needed it, and more child choice and naturalistic teaching for children who were ready for it.

“Parents may find it reassuring that even within highly specified treatment approaches like these two, therapists still adjust to individual child needs.”

The initial severity of developmental delay and autism symptom severity did not influence the impact of treatment style or intensity on any of the outcomes.

The current findings apply only to the toddler-aged children who were studied. They need to be validated through replication. The study approach also needs to be applied to older children to understand their responses to these differing treatments and intensities.

###

Funding for the study came from National Institute of Child Health and Human Development (NICHD) (R01 MH100030), as part of the Autism Centers of Excellence (ACE) Treatment Network, and from the MIND Institute Intellectual and Developmental Disabilities Research Center U54 HD079125. Clinicaltrials.gov identifier NCT02272192.

Co-authors on the study are Marie Rocha of UC Davis MIND Institute; Paul Yoder, Zachary Warren, Lisa Wallace and Elizabeth Gardner of Vanderbilt University; Annette Estes, Jeff Munson and Jessica Greenson of University of Washington; John McEachin of Autism Partnership Foundation; Geraldine Dawson of Duke University; Catherine Sugar, Gerhard Hellemann and Fiona Whelan of University of California Los Angeles.

Article: Rogers et al. (2020). A multisite randomized controlled trial comparing the effects of intervention intensity and intervention style on outcomes of young children with autism, Journal of the American Academy of Child and Adolescent Psychiatry. DOI: https://doi.org/10.1016/j.jaac.2020.06.013

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202010_new-four-year-residential-program-for-students-with-intellectual-disabilities-at-uc-davis Mon, 12 Oct 2020 07:00:00 GMT New four-year residential program for students with intellectual disabilities at UC Davis <p>A new, residential four-year college program for students with intellectual disabilities is the first of its kind in the west and is expected to serve as a model for other California schools.</p>
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The UC Davis MIND Institute and the UC Davis Office of Diversity, Equity and Inclusion have received a $2.1 million grant from the U.S. Department of Education to create an inclusive, four-year college program for students with intellectual disabilities.

The Supported Education to Elevate Diversity, or SEED, Scholar program will be the first of its kind in California, and the goal is to create a model that could be used by other universities in the state.

“It’s a game-changer. It’s the only thing like it in the west,” said Beth Foraker, an instructor in the UC Davis School of Education who will be the co-director of the SEED Scholar program.

The first group of 12 students is expected to begin classes in the fall of 2021 at UC Davis, and will likely include people with autism, Down syndrome, fragile X syndrome and other neurodevelopmental disabilities. Foraker, whose 21-year-old son Patrick has Down syndrome, has been working toward this goal for years.


Students will attend classes, have internships and jobs, live on campus and take part in extra-curricular activities (photo: former intern, 2014)

“Ninety-seven percent of adults with intellectual disabilities are living in poverty,” she said, noting that post-secondary options are severely limited, with only a handful of four-year inclusive programs in the country. “This is a chance for them to go on to make a living wage, to live an authentic life of true freedom.”

The students will live in campus housing, attend classes and take part in extracurricular activities. An internship component is also planned, with options for placement within UC Davis Health, on campus and in legislative offices at the State Capitol.

“This really is about diversity, equity and inclusion,” said Leonard Abbeduto, director of the MIND Institute. “People with intellectual disabilities should have the same rights to post-secondary education options as everyone else.”

The MIND Institute and the Office of Diversity, Equity and Inclusion will jointly run the program, which will be fully integrated into the campus community.

“I am excited about partnering with the MIND Institute to expand inclusive education and excellence,” said Renetta Garrison Tull, vice chancellor for diversity, equity, and inclusion. “Having support from the Department of Education for this new initiative to welcome students with intellectual disabilities into the UC Davis Aggie family is a reason to celebrate!”

SEED scholars will have a support system, including undergraduate students who will serve as peer mentors, helping with academics as well as social activities, health and wellness and oversight of internships. A curriculum that includes regular UC Davis courses, as well as some special courses focused on relevant issues such as independent living, will also be designed. The goal is to create a program that will culminate in a meaningful credential for the graduates.

The five-year grant from the U.S. Department of Education falls under the Transition and Postsecondary Programs for Students with Intellectual Disabilities, or TPSID, which was created in 2010. UC Davis is the first university in California to receive a TPSID for a four-year inclusive, residential program. The grant will cover about 80% of the cost of creating the program, with the remainder being covered largely by philanthropy.

“This is a very exciting opportunity for UC Davis to be on the forefront of offering college experiences for young people with disabilities,” said School of Education Dean Lauren E. Lindstrom, who’s also a MIND Institute faculty member. “The partnership between the MIND Institute and the Office of Diversity, Equity and Inclusion is very innovative.”

The goal is to expand that partnership far beyond UC Davis, with the program serving as a model for other UC and CSU schools.

“We should be able to replicate our program across every UC and every CSU, which is unreal and amazing,” said Beth Foraker.

The MIND Institute and the Office of Diversity, Equity and Inclusion will be hiring new staff members in the coming months to design the curriculum, housing options and peer mentor program, as well as a system for outreach to local schools to attract applicants.

“Even though we were motivated originally by the benefit to the students with intellectual disabilities, I think there’s going to be a great benefit to UC Davis undergraduate students in general,” Abbeduto said. “This is why we encourage diversity in all of its forms. We want people to understand the world from everyone else’s perspective because there’s great value in that.”

To receive notifications about the program, sign up for the SEED Scholar email list. 

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https://health.ucdavis.edu/health-news/mindinstitute/new-four-year-residential-program-for-students-with-intellectual-disabilities-at-uc-davis/2020/10
202010_talent-showcase-spotlights-connects-kids-with-autism-adhd Tue, 06 Oct 2020 07:00:00 GMT Talent Showcase spotlights, connects kids with autism, ADHD <p>The UC Davis MIND Institute&rsquo;s first-ever virtual showcase was a big success.</p> It may have been a virtual event, but the connections made during the UC Davis MIND Institute Talent Showcase were as real as it gets.

For about 45 minutes on Friday evening, more than 50 patients, families, supporters, faculty members and staff logged on to Zoom to celebrate the talents of their community. There were nine pre-recorded acts, representing a wide range of ages and skills.  

“I was thrilled with the turnout,” said Erin Roseborough, child life specialist at the MIND Institute and an organizer of the event. “We often assume that talents are centered around typical entertainment or sports, but I love the fact that our event showcased a huge array of talents, from piano, to art, to riding a bike,” she said.

And not just riding a bike; riding a bike with no hands for eleven minutes without stopping! The lineup also included two pianists, a chalk artist, a clay sculptor, a singer, inventive stop-motion moviemakers, a video game expert and more.

Connection and support

In between acts, the Zoom chat box was buzzing with excited chatter, including these supportive comments:

“So beautiful! An amazing story with beautiful animation!”

“Beautiful piano playing!”

“I can relate to the feelings on your video.”


One of the Talent Showcase acts was a chalk artist.

“Your voice acting was AMAZING!”

“You are so fearless, I love it!”

“This song makes my heart melt. Great job!”

“My favorite part was reading the comments the participants were sending to each other in the chat and seeing their expressions when they watched their own performances or those of the other participants,” Roseborough said.

For the past two years, the MIND Institute held a live, in-person talent show, but organizers adapted the gathering due to COVID-19.

“We understand how hard this year has been for families,” said Veronica Tuss, child life specialist at the MIND Institute and an organizer of the showcase. “Our MIND Institute families face a heightened challenge as so many of the children we serve have concrete routines and comforts that have been severely disrupted during the pandemic. We want them to know that we recognize their resiliency and that we will work just as hard to continue to support them regardless of what the circumstances may bring,” she said.

The virtual Talent Showcase is one of many Family Time at the MIND events, which are open to the public and are designed to build community. Other examples include movie and activity nights, a fall festival and more.

This year’s fall festival will also be a little different. It will feature a safe, drive-through trunk-or-treat and will be held in the MIND Institute parking lot on October 30 from 5:30-8 p.m. It will feature decorated cars, costumes, candy and more and is sponsored by the NorCal challengers. Registration is requested. If you’re interested, register for the fall festival here.

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https://health.ucdavis.edu/health-news/mindinstitute/talent-showcase-spotlights-connects-kids-with-autism-adhd/2020/10
202010_excess-folic-acid-during-pregnancy-harms-brain-development-of-mice Mon, 05 Oct 2020 07:00:00 GMT Excess folic acid during pregnancy harms brain development of mice <p>A study of pregnant mice found high levels of folic acid were associated with significant changes in brain development of offspring.</p> A UC Davis MIND Institute study of pregnant mice found that high amounts of folic acid during pregnancy harmed the brain development of embryos. Researchers say the findings indicate that more investigation is needed about the best recommended dosage for pregnant women.

“We believe there’s a Goldilocks effect with folic acid. Too little is not good, too much is not good; you have to get it just right,” said Ralph Green, UC Davis distinguished professor of pathology and medicine and a corresponding author of the study.

The research, published Sept. 30 in Cerebral Cortex, involved pregnant mice who were given either a normal amount of folic acid, 10 times the recommended amount, or none. The offspring of the mice that received the largest amount showed significant brain changes.

“It’s not subtle. It’s substantial,” said Konstantinos Zarbalis, associate professor in the Department of Pathology and Laboratory Medicine and also a corresponding author of the research. “It makes a marked difference in brain structure if you take very high amounts of folic acid.”

Paradoxically, changes in the brain due to too much folic acid mimicked those associated with a deficiency of folic acid. “This, to me, was an even more important insight,” said Zarbalis, who is also on the UC Davis MIND Institute faculty. He noted that in humans, research shows that impaired folate uptake into the brain can cause cerebral folate deficiency, a syndrome that is often associated with the development of autism.

Folic acid and pregnancy

Folic acid (the synthetic form of vitamin B9, or folate) supplementation is widely recommended for women of child-bearing age. It has been shown to substantially reduce the risk of neural tube defects, such as spina bifida, in children. Research, including studies at the MIND Institute, has also shown that prenatal vitamins that include folic acid have a protective effect against the development of autism and other disorders.

Green was on the panel with the National Academy of Sciences and the Institute of Medicine (now called the National Academy of Medicine) that determined the recommended daily intake of folic acid (400 mcg) and the maximum daily safe upper limit (1000 mcg). He was also on the Food and Drug Administration (FDA) panel that recommended adding folic acid to foods, which led to the fortification of all cereals and grains with folic acid mandated by the federal government in 1998. 

“Addition of folic acid to the diet was a good thing, and I’ve supported fortification, but there is a ‘best amount’ of folic acid, and some people may be getting more than is optimal,” said Green.

Women who have given birth to a child with neural tube defects or who have certain conditions like epilepsy and take anticonvulsants, have generally been advised to take much higher doses of folic acid.

“In animal models, we have indications that very high amounts of folic acid can be harmful to brain development of the fetus, and the clinical community should take this indication seriously, to support research in this area to reevaluate the amount of folic acid that is optimal for pregnant women,” said Zarbalis.

Zarbalis and Green suspect that the problem lies in the way folic acid is metabolized by the body and have plans to investigate the phenomenon further.

Co-authors on the study include Angelo Harlan De Crescenzo, now at the University of Nevada, Reno; Alexios Panoutsopoulos, Lyvin Tat, Zachary Schaaf and Shailaja Racherla in the UC Davis Department of Pathology and Laboratory Medicine; Lyle Henderson of the Institute for Pediatric Regenerative Medicine at Shriners Hospital for Children and Nicholas Greene and Kit-Yi Leung of the UCL Great Ormond Street Institute of Child Health, University College, London.

Funding for the study was provided by Elissa Leonard, Powell Family Charitable Trust; Shriners Hospitals for Children; UC Davis Department of Pathology and Laboratory Medicine; UC Davis MIND Institute; National Institute of Mental Health (R21MH115347) and the UK Medical Research Council (N003713).

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https://health.ucdavis.edu/health-news/mindinstitute/excess-folic-acid-during-pregnancy-harms-brain-development-of-mice/2020/10
202009_fragile-x-research-icon-empowers-hundreds-of-women-as-a-dedicated-mentor- Tue, 29 Sep 2020 07:00:00 GMT Fragile X research icon empowers hundreds of women as a dedicated mentor <p>Few physicians have mentored as many women at UC Davis Health and around the world, as Randi Hagerman, professor, pediatrician and fragile X research icon at the MIND Institute. Her global reach has increased the understanding and awareness of neurodevelopmental disorders.</p> If mentoring is a lot like gardening — where seeding, nurturing and growth are crucial for successthen Randi Hagerman, medical director of the UC Davis MIND Institute, has one heck of a green thumb.

The pediatrician has mentored hundreds of people over her decades-long career, most of them women.

“I think it’s really important to encourage women in medicine,” said Hagerman, an internationally recognized expert on the genetic condition fragile X syndrome and director of the Fragile X Research and Treatment Center at the MIND Institute. Medicine is a great career for women “because of their innate, nurturing temperament,” Hagerman said. “You know, she added, chuckling knowingly, “women are the majority of the MIND Institute faculty.”

Hagerman is vibrant and outgoing, with a ready smile and energy to spare. She jokes that after 40 years in medicine – 20 of them at the MIND Institute – she’s now a “geriatric pediatrician.” But don’t be fooled; she’s a force to be reckoned with.

Fragile X syndrome (FXS) is the most common inherited cause of intellectual disability. Its characteristics range from mild emotional, sensory or learning problems to severe intellectual disabilities and autism. Hagerman and her UC Davis physician-scientist husband Paul Hagerman discovered the related genetic disorder fragile X-associated tremor/ataxia syndrome (FXTAS) nearly 20 years ago, and patients travel from all over the globe to see Hagerman. She’s an icon in the fragile X world.

“Dr. Hagerman is an incredible physician,” said Nicole Tartaglia, pediatrician and director of the Denver Fragile X Clinic at the University of Colorado. “Her patients love her. Her passion in conjunction with her exceptional clinical skills – and love of her patients — inspired my career.”

Hagerman mentored Tartaglia when she was a medical student, then as a fellow and now as a faculty mentor in research. She said Hagerman has provided valuable advice on “navigating the complexities of life as a mom, wife, clinician and researcher.”


Randi Hagerman meets with a family about their son’s fragile X during a trip to Serbia to help patients and train medical providers

Tartaglia would probably be a child neurologist today if Hagerman hadn’t introduced her to developmental pediatrics and helped her to raise funds for research. “As a mentor, she is always positive, but provides guidance, support and career-building opportunities and networking,” said Tartaglia.

Hagerman mentors people worldwide. About five years ago, she and the MIND Institute’s Robert Miller started the International Training Program for Neurodevelopmental Disorders (ITPND), which has welcomed physicians from many countries, including China, Thailand, Indonesia, Mexico, Europe, Italy, Spain, Turkey and others to train for three to 12 months at a time. She’s currently working to bring a Nigerian pediatrician to the program and will be covering some program costs herself.

“This education, what we know at the MIND Institute, is so very important to get out to the world,” said Hagerman. “We are changing lives – we’ve helped thousands and thousands of people.”

She also likes to travel, leading fragile X screening efforts in Mexico, Colombia, Serbia, Guatemala and Iran among other places.

Everywhere she goes, she teaches.

“I don’t care where they come from, or what their level of expertise is. I love to mentor people, whether they’re medical students, residents, fellows, staff, or anyone who can make good use of the training and knowledge.”

“I don’t care where they come from, or what their level of expertise is. I love to mentor people.”

— Randi Hagerman

She works with physician networks everywhere, encouraging screening and offering guidance in communities where people have often never heard of fragile X. An estimated 300 million people worldwide have a neurodevelopmental disability, but only a small percentage of health care professionals are familiar with the conditions.  

“I always tell people I mentor, that as you learn how to treat and help patients, be sure to write a paper or a book about your knowledge, because that impacts not only the person you’re seeing at the moment, but thousands of other people.”

She’s seen this herself, perhaps most memorably when she was in Brazil, attending a fragile X conference. “A woman came up to me with this book I’d written about the treatment of fragile X and she could barely speak English, but she said to me, ‘this has made all the difference in the world to me,’ and I thought, ‘wow, she’s coming out of the jungle of Brazil and she’s read my book?’” Hagerman was floored.

“My book impacted people all over the world – people that I’ll never meet, that I’ll never interact with, and that’s why I encourage young trainees to get involved in research because your outreach is so much more dramatic,” said Hagerman.


Randi Hagerman and Nattaporn Tassanakijpanich, a 2019 ITPND trainee from Thailand

The advice made an impression on Nattaporn Tassanakijpanich, a pediatrician from Thailand who was an ITPND trainee under Hagerman for nine months last year. “Dr. Hagerman was the best mentor I’ve ever had,” she said. “She empowers me to do research studies, as she told me, ‘One doctor can treat one patient at a time, but research can treat patients all over the world.’”

Hagerman also encourages women who are interested in medicine not to be dissuaded by the challenge of work-life balance.

“I was the first resident in pediatrics who had a baby during my residency at Stanford, and I don’t think the department chair ever forgave me,” she laughed. She went back to work after two weeks, her daughter in tow, and breastfed her during rounds.

In a piece of beautiful symmetry, that same daughter, when she turned 30, was in her second year of residency at UCLA. “I told her that she’d already done that residency, half in utero and half after she was born, so it should be a piece of cake” Hagerman said with a smile.

Related stories:

https://www.ucdavis.edu/health/news/spreading-healing-and-hope

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https://health.ucdavis.edu/health-news/mindinstitute/fragile-x-research-icon-empowers-hundreds-of-women-as-a-dedicated-mentor-/2020/09
202009_how-covid-transforms-the-parent-teacher-relationship-in-special-education- Mon, 21 Sep 2020 07:00:00 GMT How COVID transforms the parent-teacher relationship in special education <p>Distance learning presents unique challenges for children with neurodevelopmental disorders, but some of the adaptations that teachers and parents are making could lead to long-term improvements in special education.&nbsp;</p> Patricia Schetter’s youngest son is a high school senior, attending classes online like so many students this year due to COVID-19.

“He’s like, ‘Mom, I just want to go back to school. I want to be on campus with my friends,’ ” said Schetter, the coordinator of autism education initiatives for the Center for Excellence in Developmental Disabilities at the UC Davis MIND Institute. “I think even the kids are recognizing that though this is necessary right now, it may not be optimal,” she said.

Schetter, a behavior analyst, works with a lot of kids for whom distance learning can be extraordinarily challenging — those with autism spectrum disorder, attention-deficit/hyperactivity disorder (ADHD) and other neurodevelopmental disabilities.

“A lot of these children aren’t able to sit and navigate the computer without support, so now parents are suddenly the classroom monitor, the teacher of some subjects, the behavior support provider and more,” she said. “It’s especially tough for families who have multiple kids with disabilities.”

Fighting isolation

The loss of social opportunities is acute for children with autism and other neurodevelopmental disorders.

“Those authentic social interactions that they would have in a classroom with their peers, or on the playground are not happening,” said Schetter.

What to do?

“Some therapists and educators are working on social skills through online groups and training, but we don’t have a ton of research to show how effective that is; still, it’s a needed adaptation,” said Schetter. The MIND Institute has moved its social skills group sessions online, as well.

There are online options developing more organically, too, like “lunch bunches” for kids to connect online while eating, or virtual show-and-tell sessions outside of school hours. These were just a few of the suggestions Schetter mentioned during a UC Davis Health Facebook Live about distance learning.

These efforts could be organized by anyone, from parents, to teachers, therapists, counselors, even the lunch duty staff, said Schetter. “Right now, it’s all hands on deck.”

Teaching parents

Children with autism usually have an Individualized Education Program, or IEP, a plan that lays out the child’s educational needs and goals, which often include in-person, hands-on therapies. The challenge is how to deliver those virtually.

Enter creativity — and parents.

“I’m hopeful that what teachers and parents have learned about this process doesn’t go away when we go back to in-person education, because it’s a really nice byproduct and something that could be a good outcome from this.”

— Patricia Schetter

“Tele-health can be effective for speech therapy, but kids that are significantly impacted may not be able to benefit from some therapies virtually and that’s when the parent steps in,” said Schetter.

“So, the therapist works with the parents, who then works with the child while the therapist gives feedback. It’s an added burden on parents, but the positive thing is, it gives them skills to help their children,” she said, “even outside of the school day.”

Schetter coordinates the California Autism Professional Training and Information Network (CAPTAIN), a collaboration between multiple state agencies and the MIND Institute, which is focused on evidence-based practices in autism education and is funded by the California Department of Education.

She said when COVID-19 forced learning online, teachers asked CAPTAIN for help with engaging kids and coaching parents. CAPTAIN turned to an existing, successful program, the Autism Center of Excellence’s (ACE) ECHO, a teleconferencing hub of autism experts who assist physicians in rural communities. Along with ACE, they developed a new ECHO to help educators.

“I’m hopeful that what teachers and parents have learned about this process doesn’t go away when we go back to in-person education, because it’s a really nice byproduct and something that could be a good outcome from this,” she said.

What’s next for special education?

The state has given school districts the option of bringing some children — including those with disabilities — back to campuses with proper masking and distancing.

“That is a very helpful thing, that there may be an option to go back sooner rather than later for some face-to-face intervention,” Schetter said.

Something else that’s key for kids with autism and ADHD is routine.

“Now, there’s a new routine established,” said Schetter. “So now, when we go to transition back to in-person instruction, it’s kind of like starting all over again — another disruption in the established routine, which is particularly hard for kids with disabilities because routines are so important.”

For many, she said, it’s the uncertainty that’s toughest. She knows firsthand. While her 17-year-old son attends his senior classes online, her 19-year old son, who has ADHD, is waiting to resume his training program in music production, which was put on hold due to the pandemic.

But she sees hope on the horizon.

“There’s some optimism that though online learning probably will be a part of the equation for the next several months, maybe it won’t be the only thing offered, and that some face to face instruction will start to resume pretty soon.”

Resources for families:

Autism focused intervention resources and modules

The autism house – visual supports in the home (video)

Visual support toolkit from Autism Speaks

Using visual supports in the home  – evidence-based practices MIND Institute video

Using video modeling in the home – evidence-based practices (featuring the MIND Institute’s Patricia Schetter)

Help is in your hands – developed by the MIND Institute

This list developed by CAPTAIN contains many more resources for families

About the MIND Institute
The UC Davis MIND Institute in Sacramento, Calif. was founded in 1998 as a unique interdisciplinary research center where families, community leaders, researchers, clinicians and volunteers work together toward a common goal: researching causes, treatments and potential prevention of neurodevelopmental disorders. The institute has major research efforts in autism, fragile X syndrome, chromosome 22q11.2 deletion syndrome, attention-deficit/hyperactivity disorder (ADHD) and Down syndrome. More information about the institute and its Distinguished Lecturer Series, including previous presentations in this series, is available on the Web at mindinstitute.ucdavis.edu.

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202008_pregnant-mothers-immunity-tied-to-behavioral-emotional-challenges-for-kids-with-autism Fri, 14 Aug 2020 07:00:00 GMT Pregnant mother's immunity tied to behavioral, emotional challenges for kids with autism <p>Children with autism born to mothers who had immune conditions during their pregnancy are more likely to have behavioral and emotional problems, a UC Davis Health study has found. Offspring sex may also interact with maternal immune conditions to influence outcomes, particularly in terms of a child's cognition.</p> Children with autism born to mothers who had immune conditions during their pregnancy are more likely to have behavioral and emotional problems, a UC Davis Health study has found. The study examined maternal immune history as a predictor of symptoms in children with autism.

“We tested the ability of maternal immune history to predict ASD symptoms and the possible role that the sex of the offspring plays,” said Paul Ashwood, professor of microbiology and immunology and faculty member at the UC Davis MIND Institute.

Published Aug. 14 in Translational Psychiatry, the study found that offspring sex may interact with maternal immune conditions to influence outcomes, particularly in terms of a child’s cognition.

Maternal immunity conditions and autism

Maternal immune conditions are caused by a dysfunction of the mother’s immune system. They include allergies, asthma, autoimmune diseases, autoinflammatory syndromes and immunological deficiency syndromes. Previous studies have shown that maternal immune conditions are more prevalent in mothers of children with autism spectrum disorder (ASD).

The researchers enrolled 363 mothers and their children (252 males and 111 females) from the Autism Phenome Project (APP) and Girls with Autism Imaging of Neurodevelopment (GAIN) study at the UC Davis MIND Institute. The median age of the children was three years.

The researchers measured the children’s autism severity and assessed a set of behavioral and emotional problems such as aggression and anxiety. They also measured the children’s development and cognitive functioning.

The study found that around 27% of the mothers had immune conditions during their pregnancy. Of these mothers, 64% reported a history of asthma, the most common immune condition. Other frequent conditions included Hashimoto’s thyroiditis (hypothyroidism), Raynaud’s disease (blood circulation disease), alopecia (hair loss), psoriasis (skin disease) and rheumatoid arthritis (joint tissue inflammation).

The study also found that maternal immune conditions are associated with increased behavioral and emotional problems but not reduced cognitive functioning in children with autism.

Does the sex of the offspring interact with the influence of maternal immune conditions on autism symptoms?

According to the Centers for Disease Control and Prevention (CDC), ASD is four times more common among boys than among girls.

“Our study explored whether offspring sex interacts with the presence of maternal immune conditions to influence behavioral outcomes in children with autism,” said Ashwood. “Maternal immune conditions may be one environmental factor which contributes to the higher male prevalence seen in ASD.”

The study found that a history of maternal immune conditions was more common in male children with ASD (31%) compared to female (18%). Specifically, asthma was twice as common in mothers of male children with ASD than in mothers of female children with ASD.

The study also showed that in cases of ASD where maternal immune conditions are present, female offspring are less likely to be susceptible to adverse cognitive outcomes in response to maternal inflammation than male offspring.

“This critical finding links offspring sex and maternal immune conditions to autism,” said Ashwood. “It provides more evidence that male offspring are at higher risk of adverse outcomes due to maternal immunity activation compared to female offspring.”

Future studies would include identifying the type, severity and gestational timing of immune conditions, and then examining offspring outcomes over time.

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Co-authors on this study are Brianna Heath, Christine Nordahl and Sally Rogers in the department of psychiatry at UC Davis and at the UC Davis MIND Institute, Destanie Rose in the department of medical microbiology and immunology and at the UC Davis MIND Institute,  Shrujna Patel, Russell Dale and Adam Guastella in the Children’s Hospital Westmead Clinical School at the University of Sydney.

Funding for this study was provided by the National Institutes of Health (RO1MH118209, RO1HD090214, R21MH116383, R21ES025560; RO1MH104438), Grace Gardner Johnson and Jane B. Johnson, Autism Speaks Foundation, Autism Research Institute, the UC Davis Clinical and Translational Science Center (CTSC) Pilot Translational and Clinical Studies Program, a Child/Lifespan Health Award. This project was also supported by the UC Davis MIND Institute Intellectual and Developmental Disabilities Research Center (IDDRC) (U54HD079125).

Article: Patel, S., Dale, R.C., Rose, D. et al. Maternal immune conditions are increased in males with autism spectrum disorders and are associated with behavioural and emotional but not cognitive co-morbidity. Translational Psychiatry 10, 286 (2020). https://doi.org/10.1038/s41398-020-00976-2

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202008_uc-davis-mind-institute-event-draws-thousands-of-people-from-15-countries Wed, 12 Aug 2020 07:00:00 GMT UC Davis MIND Institute event draws thousands of people from 15 countries <p>The UC Davis MIND Institute&rsquo;s first virtual Summer Institute breaks records, reaching thousands of people in at least 15 countries.</p> If you’re looking for a positive story amidst the disappointment of continual coronavirus cancellations, this is it.

Every year, the Center of Excellence in Developmental Disabilities at the UC Davis MIND Institute offers the MIND Summer Institute on Neurodevelopmental Disabilities, a learning program that brings together experts, family members and caregivers. It’s typically an in-person event that attracts about 300 people.

This year, it reached thousands.

The MIND Summer Institute, like so many other events, went virtual last week (August 7) to avoid any COVID-19 risk. More than 1,000 people registered for the zoom event, and as many as 13,000 have been reached through Facebook Live so far.

There was also another, unexpected benefit: attendees from all over the world.

They logged on from Argentina, Brazil, Peru, the Philippines, Ecuador and more; at least 15 countries in all. The event was captioned live in Spanish and Korean.

“It was really the best possible outcome,” said Leonard Abbeduto, director of the MIND Institute. “The opportunity to have attendees from all over the world learning and contributing benefitted everyone.”

A focus on women with autism

This year’s Summer Institute, Women on the Spectrum: From Research to Real Life, focused on the research and experiences of girls and women with autism, which can differ from those of men and boys.

Far fewer girls than boys are diagnosed with Autism Spectrum Disorder (ASD), and there is evidence that it is under-diagnosed in females. The UC Davis MIND Institute’s Christine Wu Nordahl focused on one possible reason for that in her presentation: camouflaging, something women with autism report doing more often.

“I think of it as trying to put on your best “normal,” whatever that is,” said Nordahl, an associate professor in the department of psychiatry and behavioral sciences. “We’re trying to understand the strategies that people use to put on this best normal.”

Nordahl said examples include forcing yourself to make eye contact with someone, talking to people in a store even if you don’t want to, or avoiding the urge to talk about subjects that you’re passionate about in order to fit in. Nordahl pointed out that the mental health consequences of camouflaging for people with autism can be negative and significant, including depression and anxiety.

The MIND Institute’s Meghan Miller focused her talk on the intersection of autism and attention deficit hyperactivity disorder (ADHD), particularly in females. ASD and ADHD co-occur frequently, and Miller noted that can present a diagnostic conundrum for families.

Miller highlighted research that found when children who have both disorders are diagnosed with ADHD first, they tend to get the autism diagnosis several years later than those children who are diagnosed first with autism, or with both autism and ADHD at the same time.

“It could have a big impact on the window of opportunity for early intervention,” said Miller, an assistant professor in the department of psychiatry and behavioral sciences. “This really suggests that autism should be considered in young children who have high levels of ADHD symptoms.”

The MIND Summer Institute also featured a panel of courageous women who opened up about their own experiences with autism. They included Kristen Godfrey, a UC Davis Health employee, Erica Mineo, a UC Davis pre-veterinary student and two UC Davis graduates - Chloe Rankin, a motivational speaker on autism and Lisa Malins, a bioinformatician.

Malins had some inspirational advice for individuals with autism:

“I want you to be your best autistic self. Just be you. You don’t have to change who you are for anyone, because your best version of yourself will always be better than your best version of someone else,” she said.

Watch a recorded version of the event here.

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202008_gi-symptoms-linked-to-behavioral-problems-in-children-especially-those-with-autism Mon, 10 Aug 2020 07:00:00 GMT GI symptoms linked to behavioral problems in children, especially those with autism <p>Common gastrointestinal symptoms are linked to troubling sleep problems, self-harm and physical complaints in preschool children. These symptoms are more common and potentially disruptive in young kids with autism.</p> A new UC Davis Health study found that common gastrointestinal (GI) symptoms such as diarrhea, constipation and bloating are linked to troubling sleep problems, self-harm and physical complaints in preschool children. According to the study, published Aug. 6 in Autism Research, these GI symptoms are much more common and potentially disruptive in young kids with autism.

“Clinicians and parents need to be aware of the high occurrence of GI problems in kids with autism,” said Bibiana Restrepo, assistant clinical professor of pediatrics and first author on the study. “This study highlights the link between GI symptoms and some problematic behaviors we see in preschool-aged children.”

Children with autism experience more gastrointestinal symptoms

Gastrointestinal concerns are frequently reported by parents of children with autism spectrum disorder (ASD). Researchers from the UC Davis MIND Institute evaluated the presence of GI symptoms in preschool-aged children with and without autism.

The study included 255 (184 males/71 females) children with ASD between two and 3.5 years of age and 129 (75 males/54 females) typically developing children in the same age group. Pediatricians specializing in autism interviewed caregivers during the children’s medical evaluation. They asked the parents how often their children experienced GI symptoms such as difficulty swallowing, abdominal pain, bloating, diarrhea, constipation, painful stooling, vomiting, difficulty swallowing, blood in stool and blood in vomit.

The researchers grouped children in two categories: those who experienced one or more GI symptom and those who never or rarely had GI symptoms in the last three months. They compared the children in the two groups on measures of developmental, behavioral and adaptive functioning.

The study found that preschool-aged children with ASD were 2.7 times more likely to experience GI symptoms than their typically developing peers. In fact, almost 50% of children with ASD reported frequent GI symptoms - compared to 18% of children with typical development. Around 30% of the children with ASD experienced multiple GI symptoms.

Problem behaviors as an expression of GI discomfort in children

Multiple GI symptoms were associated with increased challenges with sleep and attention, as well as problem behaviors related to self-harm, aggression and restricted or repetitive behavior in both autistic and typically developing children. The severity of these problems was higher in children with autism.

“Problem behaviors may be an expression of GI discomfort in preschool-aged children,” said Christine Wu Nordahl, associate professor at UC Davis MIND Institute and the department of psychiatry and behavioral sciences. “GI symptoms are often treatable, so it is important to recognize how common they are in children with autism. Treating their GI symptoms could potentially provide some relief to the kids and their parents.”

The study found no link between GI symptoms and the children’s cognitive development or gender. GI symptoms were equally common in male and female preschool children.

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Funding for this study was provided by the National Institute of Mental Health (R01MH104438, R01MH103284, R01MH103371, R01HD090214), the MIND Institute Intellectual and Developmental Disabilities Research Center (U54HD079125) and an Autism Center of Excellence grant awarded by the National Institute of Child Health and Development (NICHD) (P50 HD093079).

The co-authors on the study were Sally Rogers, Brianna Heath, Alexa Hechtman, Marjorie Solomon and David Amaral at UC Davis MIND Institute and the Department of Psychiatry and Behavioral Sciences in UC Davis; Kathleen Angkustsiri at the UC Davis MIND Institute and the Department of Pediatrics in UC Davis; Sandra Taylor at the Department of Public Health Sciences in UC Davis; Jacqueline Cabral at the Department of Community Health in Tufts University; and Paul Ashwood at the Department of Medical Microbiology and Immunology in UC Davis.

Article: Restrepo et al. "Developmental-Behavioral Profiles in Children with Autism Spectrum Disorder and Co-occurring Gastrointestinal Symptoms," Autism Research.

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202007_advice-from-uc-davis-experts-to-calm-the-anxieties-of-back-to-school-during-covid-19 Fri, 31 Jul 2020 07:00:00 GMT Advice from UC Davis experts to calm the anxieties of back-to-school during COVID-19 (video) <p>Kids get anxious when their lives are uncertain, and in this coronavirus era, almost everything is uncertain. Two experts help families work through the stress of an unprecedented back-to-school year.</p>
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Going back to school always creates anxiety for kids, much of it normal. But there is nothing normal about this new school year, so expect entirely new stress levels among kids – both good and bad, two UC Davis behavioral experts said on UC Davis LIVE: COVID-19.

“Anxiety comes from the difficulty of operating with uncertainty. There is a lot of uncertainty right now,” said Breanna Winder-Patel, an assistant clinical professor in the Department of Pediatrics and a clinical psychologist at the UC Davis MIND Institute. “But anxiety can be difficult to detect with children.”

Winder-Patel and Marjorie Solomon, a UC Davis Health professor of clinical psychiatry and a faculty member of the MIND Institute, answered questions from viewers on July 30 about back-to-school anxieties kids are feeling amid the coronavirus pandemic and how to help them be more comfortable.

Some anxiety helps everyone – children, and adults – cope with their world, but too much can interfere with their daily lives. The difficulty, especially with younger children, is knowing when they’re feeling too anxious.


Breanna Winder-Patel said parents can ease back-to-school anxiety by helping kids know what to expect.

What to look for

Sometimes kids get physical symptoms, like stomach aches or headaches. Often, they’ll show it in their behavior, such as avoiding being alone or going to bed

“Think about how they might be avoiding things,” Winder-Patel said. “We see kids not wanting to have their cameras on for a Zoom meeting because they’re worrying about, ‘What will the other kids think of me?’”

For children with autism spectrum disorder, it may be a small regression in development or other subtle changes.

“Those children often have what we call a ‘special interest,’ when they are extremely interested in Legos or Pokémon or something,” Solomon said. “Sometimes you can tell kids are extra anxious when they resort to using their special interest more.”

Not all kids are anxious

“Some kids are extremely anxious about so much right now, like worrying about their parents leaving to go to work and getting sick, or about missing their normal routine, but not all of them,” Solomon said. “Others feel safer. They’re in their homes, in their space, and they don’t have to venture out to school where they often have a lot of problems.”

She said parents can help by being good detectives about their kids, and by talking to them about what they’re going through.

“Parents tend to know their children really well,” Solomon said. “They can give their children a chance to voice their anxieties about going back to school or about anything to do with COVID-19.”

Coping for everyone in the house

“For a lot of kids, especially young kids, their experience is what adults convey to them,” Winder-Patel said. “If you’re saying we’re going to do some good things as a family, and we’re all going to work on being flexible and brave, that’s very different from kids getting yelled at for not staying 6 feet away or not wearing masks.”

They said emphasize the idea that there are things they can control and focus on this – such as washing their hands, wearing a mask, keeping a social distance. That will help kids feel less anxious about the things they can’t control.

And let them know there are things they’re doing right.

“Sometimes we forget to reward children for things that went well because we’re just so relieved they went well,” Winder-Patel said. “Reward them for being flexible today when the mic went out, or for bravery. Tell them, ‘I know you didn’t want to do that video today, but you pushed through and did it anyway.’ That can go a long way.”

How to avoid projecting your anxiety onto your kids

“Sometime as parents, we feel we have to shield our kids from all the stress,” Winder-Patel said. “But kids need to experience some stress in their lives. It’s better if we model for them how we cope. Say, ‘I’d like to go for a walk, would you like to come with me?’”

And go easy on yourself. For instance, Solomon said, don’t expect to be the best home teacher on Earth if you’re not trained for it, and don’t expect to keep a perfect household. Just be open about what your kids – and you -- are feeling.


Marjorie Solomon said parents should go easy on self-expectations in COVID-19 times. Kids will be less anxious if parents are less stressed.

“It’s very important parents keep up their own self-care,” she said. “Take those walks, have a quiet dinner with your partner. Do the things that bring you joy.”

Techniques to relieve anxiety about online school

“It goes a long way when parents work to help children know what to expect,” Solomon said.

Try these techniques to tamp down anxiety and to help them feel comfortable in their online classes,

  • Don’t assume kids are ready for this. Ask if they have questions or uncertainties.
  • Create a visual schedule of what their day will look like. Knowing what’s ahead is comforting.
  • Use a technique called “social stories” and talk kids through some coming event that may be making them anxious. It’s a simple script about how something will unfold.

“Walk them through it,” Winder-Patel said. “Say, ‘when we get ready to go online in the morning, first we turn on our computer, then we check out the microphone and camera.’ When they’re anxious, they can go to the script and feel a little calmer.”

  • Do a trial run on Zoom or whatever they are using for their school meetings.
  • Tell them, if the anxiety gets too much either before they start or during the day, they have to be like private investigators and ask what is causing it. Then you can talk them through it.
  • If possible, have a space devoted only to distance learning. That will be their classroom. When they have lunch, then they go to a relaxing place.
  • Be sure they have physical activities to burn off energy sprinkled throughout the day and interrupting classroom time. Put that in the schedule you show them.

“Keep remembering that a lot of their anxiety comes from not knowing what they’re supposed to do,” Winder-Patel said.

Help them stay connected to their friends

“It’s challenging for them to go months without seeing peers,” Winder-Patel said. “There are no easy solutions.”

They suggested a handful of ways to help kids keep some connections. They include:

  • Scheduling regular virtual play dates.
  • Try creating a regular online lunch bunch for a handful of friends.
  • Making projects kids can send each other in the mail. “It’s old-fashioned but it’s fun,” Winder-Patel said.
  • Help them do something together on Zoom, like build the same Lego set.
  • Create games they can play together but separately, such as hiding painted rocks for the other to find.

“It is important to help them understand that even though we don’t see a friend every day, it doesn’t mean the friend went away,” Winder-Patel said.

What about tweens, teens and young adults who returned home?

“A lot of the principles are the same,” Solomon said. “Just developmentally, move them up a tier.”

For them, interaction with friends may be even more important, and they are likely to spend a lot of time alone on whatever devices they have.

“It’s a good practice in any family to not allow anyone to spend too much time on screens,” she said. “But for now, cut yourself some slack. You can’t control everything.”

As much as they want to connect with their friends, there is still a lot of value in keeping tween, teens and young adults active with their family, too.

“It’s important that you’re doing family activities that are age appropriate and aren’t too ‘not cool,’” Solomon said. “Which can be quite a challenge.”

Don’t hesitate to turn to professional help

“Telepsychiatry has become a very accepted and useful practice,” Solomon said. “It’s relatively simple to get more serious help from your provider now. At UC Davis Health, we’re really a leader in telehealth. We don’t have a lot of great studies on telehealth, but from what we’re observing clinically, it is very effective.”

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https://health.ucdavis.edu/health-news/mindinstitute/advice-from-uc-davis-experts-to-calm-the-anxieties-of-back-to-school-during-covid-19/2020/07
202007_toy-or-therapy-device-uc-davis-health-researchers-study-effectiveness-of-fidget-tools Wed, 29 Jul 2020 07:00:00 GMT Toy or therapy device? UC Davis Health researchers study effectiveness of fidget tools <p>A new UC Davis MIND Institute Study explores whether a high-tech fidget device increases focus and relieves anxiety in adults with ADHD, which is particularly relevant during the COVID-19 pandemic.</p> You’ll find them in nearly any department store or gas station: Fidget spinners, fidget cubes and other devices designed to help you focus. There’s no scientific evidence about whether they work, but that’s about to change, thanks for a new study by researchers at the UC Davis MIND Institute and UC Santa Cruz.

“We need science to weigh in on whether these devices can help – and how,” said Julie Schweitzer, professor of psychiatry and behavioral sciences at the UC Davis MIND Institute and the lead investigator on the project. “ADHD is associated with lower income, job instability, higher substance abuse and accident rates and more.”

Schweitzer said anxiety surrounding COVID-19 and working or attending school from home is a challenge, and the study has implications for how fidget devices might ease anxiety as well as increase focus.

“People are expected to be paying attention to virtual meetings for hours, and anything you can do to help improve people’s attention, alertness and emotional regulation could be helpful,” added Schweitzer.

The research team is recruiting 110 adults with Attention Deficit Hyperactivity Disorder (ADHD). Participants will perform attention and memory tasks and be shown film clips to evoke an emotional response. The team will study natural physical movements, or fidgeting, in addition to giving some participants a specially designed “smart” fidget ball to squeeze, stroke or tap.

The study is funded by a grant from the National Institutes of Mental Health.

A high-tech “smart” fidget prototype

The fidget ball – a silicon skeleton with a soft fabric cover - will measure each of those movements using internal sensors. The data are transmitted in real-time to a computer for analysis.

“The sensors measure not only when someone touches them, but how much pressure is used,” said Katherine Isbister, professor of computational media at the UC Santa Cruz School of Engineering, and a co-investigator on the project. Her team created the device.

The study participants will also be videotaped and hooked up to an electrocardiogram device.

 “We’ll be looking at whether there are physiological effects as well, such as changes in heart rate variability,” said UC Davis’ Schweitzer. “We’ll be able to see when and how they use the ball, connect that with the physiology, and determine whether it’s working for them.”

Using AI to track response

Another unique aspect of the study is its use of machine learning, an area of artificial intelligence, or AI, to analyze results. Using the data from the study, an AI program should be able to predict what fidget ball behaviors are effective and recommend fidgeting strategies as possible therapies. Co-investigator Daniel Shapiro, an adjunct professor of computational media at UC Santa Cruz, is developing the approach.

“Our end goal is really audacious,” said Schweitzer. “Eventually, we’d like to mass produce fidget devices that interact with a smart watch that would give the individual cues to let them know it was time to tap or squeeze the ball to help modulate their attention or emotions.”

Building on previous research

Schweitzer’s previous research showed that fidgeting – without a device - improved cognitive function in children with ADHD. “It’s a paradigm shift,” said Schweitzer. “My theory is that hyperactivity is actually an unconscious coping mechanism, so instead of trying to get adults and kids with ADHD to sit still, we can use this behavior to help people function better.”

Now the goal is to see whether adding the fidget ball could be even more helpful, and perhaps less disruptive to others. “If we can help people by improving their attention and cognitive skills, as well as regulating their emotions, that would be pretty awesome,” said Schweitzer.

Grant Information:
National Institutes of Mental Health R21, MH121901: Can fidgeting lead to enhanced attention and emotional regulation in adult ADHD? Total amount: $417,969

Information on how to enroll in the study:
Interested in enrolling in the study? The research team is looking for adults with ADHD, ages 18-30. Contact hs-airlab@ucdavis.edu for more information.

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https://health.ucdavis.edu/health-news/mindinstitute/toy-or-therapy-device-uc-davis-health-researchers-study-effectiveness-of-fidget-tools/2020/07
202007_uc-davis-live-on-children-anxiety-and-going-back-to-school-on-july-30 Mon, 27 Jul 2020 07:00:00 GMT UC Davis LIVE on children, anxiety and going back to school <p>In this week&rsquo;s UC Davis LIVE: COVID-19 two psychologists from the UC Davis MIND Institute<strong><span>&nbsp;</span></strong>will discuss how children and parents can manage the stress and anxiety of going back to school this fall.</p> In this week’s UC Davis LIVE: COVID-19 two psychologists from the UC Davis MIND Institute will discuss how children and parents can manage the stress and anxiety of going back to school this fall.

A new school year is always an exciting and stressful time for children and parents alike, and this year there is the added stress of coronavirus — whether children are headed to real classrooms with new safety precautions, or to online classrooms with their own stress points.

The guests:

  • Breanna Winder-Patel is a clinical psychologist at the UC Davis MIND Institute and assistant clinical professor in the Department of Pediatrics. She has a cognitive-behavioral therapy anxiety clinic and carries out research on anxiety in individuals with autism spectrum disorder and intellectual disability.
  • Marjorie Solomon is professor of clinical psychiatry in the Department of Psychiatry and Behavioral Sciences at UC Davis. She is on the faculty of the MIND Institute and of the postdoctoral Autism Research Training Program. Solomon is a licensed psychologist whose primary clinical work is focused on high-functioning children, adolescents and young adults with autism spectrum disorder.

The conversation, hosted by Soterios Johnson, will be streamed live on Facebook YouTube and Twitter beginning at 11 a.m. Thursday, July 30.  

Questions can be submitted via Facebook and Twitter either in advance or during the show.

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https://health.ucdavis.edu/health-news/mindinstitute/uc-davis-live-on-children-anxiety-and-going-back-to-school-on-july-30/2020/07
202007_major-grant-for-uc-davis-health-center-focused-on-disabilities-research Fri, 24 Jul 2020 07:00:00 GMT Major grant for UC Davis Health center focused on disabilities research <p>An engine for interdisciplinary research: The UC Davis MIND Institute&rsquo;s Intellectual and Developmental Disabilities Research Center is renewed with a $6.2 million grant from the National Institutes of Health.</p> The National Institutes of Health has renewed the UC Davis MIND Institute’s Intellectual and Developmental Disabilities Research Center (IDDRC) with a five-year, $6.2 million grant.

The center supports interdisciplinary research focused on understanding, treating and preventing the challenges associated with intellectual and developmental disabilities.

“The NIH funding, combined with the generous support of the UC Davis School of Medicine and its Department of Psychiatry and Behavioral Sciences, allows us to create a strong and flexible infrastructure for our research,” said IDDRC Director Leonard Abbeduto, who also directs the MIND Institute. “It encourages innovation and facilitates interdisciplinary collaboration.”

A focus on finding treatments

The IDDRC acts like an engine for research at UC Davis Health and elsewhere by providing researchers with support and tools they likely wouldn’t be able to obtain otherwise.

“The funding allows us to provide expertise, technology and resources that an individual investigator couldn’t easily access or afford,” said Abbeduto.

Those resources are organized into five key areas, or scientific cores. The support includes everything from equipment, like highly specialized microscopes, to biostatistics experts who help analyze results, to scientists working in the center’s rodent behavior facilities. There’s also a large online registry that connects researchers with interested families.

The goal of the IDDRC is to bring disciplines together to increase the likelihood of finding treatments for neuro-developmental disabilities such as autism, fragile X syndrome, or Down syndrome.

“We really focus on taking very basic science and moving from there to more applied strategies and treatments,” said Abbeduto.

A prestigious network

The center is one of only 14 in the country and was established in 2013. It is part of a prestigious network of research centers, some of which have been operating for more than 50 years. The network represents the nation’s most sustained effort to prevent and treat disabilities through biomedical and behavioral research.

Abbeduto said the IDDRC has been a great fit for the UC Davis Health community.

“We’re leveraging the expertise that we have here at UC Davis to build these cores and to ensure they represent cutting-edge science, are cost-effective and more robust, and are able to support this kind of interdisciplinary research.”

Most of all, he said, there’s a considerable benefit to the community.

“I think the potential for treatment has been really accelerated by us having the IDDRC.”

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202007_uc-davis-health-study-seeks-better-detection-of-depression-in-children-with-autism Tue, 21 Jul 2020 07:00:00 GMT UC Davis Health study seeks better detection of depression in children with autism <p>UC Davis Health researchers are hoping to create better interventions for children with autism who struggle with depression.</p> The National Institutes of Health (NIH) is funding a new UC Davis MIND Institute study that may lead to better tools for the diagnosis and treatment of depression in children and adolescents with autism.

Around 70% of people with autism spectrum disorder (ASD) will develop depression at some point in their lives. For many, the turning point may be their teen years.

“We want to understand how the brains of teens differ in development between middle childhood and adolescence such that some develop depression and others don’t,” said Marjorie Solomon, professor in the Department of Psychiatry and Behavioral Health and lead researcher on the study.

Brain scans may hold clues

The study will utilize a well-established test to gauge the teens’ emotional well-being. It will involve showing the adolescents photos of people who are happy, angry or sad. The adolescents will then be asked about their own feelings after seeing the pictures, while a functional magnetic resonance imaging (fMRI) machine takes images of their brains. Solomon says that may help answer a key question: “What do the behavioral and neural signatures of depression look like in children with ASD and in typically developing kids?”

Advancing a groundbreaking longitudinal study

The research builds on the work of the Autism Phenome Project (APP), the largest and most comprehensive assessment of children with autism in the world. It will involve teenagers between the ages of 15 and 18 of varying cognitive abilities. These teenagers have been part of the APP since they were 2-3 years old.

The APP research team has been tracking the social and emotional well-being of these teens for many years. Solomon says that’s what makes this study so impactful.

“We will be able to look back at these assessments of many aspects of child behavior and functioning to see if there are trajectories of depression.”

If researchers can pinpoint those trajectories, they may be able to intervene before depression takes hold. “If we can predict who’s at risk for this problem, we can step in and try to support their development so that they don’t develop severe symptoms of depression, which could hold them back later on.”

Co-investigators on the study are Simona Ghetti, Department of Psychology; Amanda Guyer, Center for Mind and Brain; David Amaral, Department of Psychiatry and Behavioral Sciences; Christine Wu Nordahl, Psychiatry and Behavioral Sciences; Emilio Ferrer, Department of Psychology; and Anna Maria Iosif, Public Health Sciences from UC Davis.

Grant: National Institutes of Health R01, 2R01MH103284-06A1: “Neural and behavioral predictors of cognitive development and internalizing problems in adolescents with autism spectrum disorder.”

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https://health.ucdavis.edu/health-news/mindinstitute/uc-davis-health-study-seeks-better-detection-of-depression-in-children-with-autism/2020/07
202006_unexpected-mental-illnesses-found-in-a-spectrum-of-a-rare-genetic-disorder- Wed, 24 Jun 2020 07:00:00 GMT Unexpected spectrum of mental illnesses found in patients with rare genetic disorder <p>UC Davis MIND Institute researchers found an unexpected spectrum of mental illnesses in patients with a rare gene mutation. These patients had a &ldquo;double hit&rdquo; condition that combined features and symptoms of fragile X syndrome and premutation disorder, in addition to a range of psychiatric symptoms.</p> UC Davis MIND Institute researchers found an unexpected set of mental illnesses in patients with a spectrum of a rare genetic disorder. Their study revealed the need for clinicians to consider the complexities of co-existing conditions in patients with both psychological and fragile X associated disorders. 

Double-hit fragile X spectrum cases

The patients had a “double-hit” condition that combined features and symptoms of fragile X syndrome and premutation disorder.

Fragile X syndrome (FXS), a rare single-gene disorder, is the leading inherited cause of intellectual disability. It is caused by a lack of the fragile X mental retardation protein (FMRP) resulting from a change, called mutation, in the FMR1 gene.

In most people, the CGG section of the FMR1 gene is repeated between 10 to 40 times. In some rare cases, individuals have premutation disorder when their FMR1 gene has 55 to 200 CGG repeats. When this section expands to over 200 repeats, there is a full mutation in the gene. This full mutation causes an inability to produce FMRP and leads to FXS.

The study presented 14 cases of male patients with FMR1-gene mutations and a variety of psychiatric disorders. These patients, ages ranging between nine and 58 years, had features resembling FXS and symptoms common among premutation carriers.

FXS symptoms include hand flapping, hyperactivity, recurrent ear infections, severe anxiety and tantrums. Individuals with FXS frequently have speech and language delays, behavior challenges and symptoms of autism spectrum disorder (ASD).

Premutation, on the other hand, is associated with the development of neurological problems associated with aging. One example of such age-related problems is Fragile X-associated tremor ataxia syndrome (FXTAS). FXTAS is a disease characterized by progressively severe tremor and difficulty with walking and balance. Premutation is also associated with medical and psychiatric problems such as migraines, hypertension, sleep apnea, restless legs syndrome, anxiety and depression.

Neurological and developmental problems

The study found that patients with premutation had a much earlier onset of neurological problems. Some even had earlier symptoms of neurodegeneration, particularly if they had developmental delay or ASD during their childhood. They also showed trouble with their emotional processing.

“Lower levels of FMRP can cause a range of emotional processing issues,” said Andrea Schneider, associate research scientist in the Department of Pediatrics and at UC Davis MIND Institute and the lead author on the study. “Some of the common emotion-related disorders we found are mood disorders, anxiety and psychotic features.”

The researchers called for more studies on the association of psychosis and lower FMRP levels - especially in patients with a double hit condition. The case series also highlighted the need for clinicians to consider additional possible diagnosis for FMR1 mutations in psychiatric patients.

“Clinicians need to be aware of the physical and mental toll on patients with a FMR1 mutation who also show symptoms of psychosis or early onset of neurological problems,” said Paul Hagerman, professor of biochemistry and molecular medicine at UC Davis and co-author on the study. “This understanding helps develop treatment plans that address the multiple needs of these patients.”

The study, titled “Elevated FMR1-mRNA and lowered FMRP – A double-hit mechanism for psychiatric features in men with FMR1 premutations,” appears in the latest issue of the journal Translational Psychiatry.

The co-authors on this study are Susan Bacalman, Louise Gane, Randi Hagerman, Paul Hagerman and Flora Tassone from UC Davis Health, Ana Maria Cabal-Herrera from Research Group on Perinatal Congenital Malformations and Dysmorphology (MACOS) at the Universidad del Valle, Colombia and Tri Indah Winarni from the University Semarang, Indonesia.

This study was funded by Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (HD036072, R01HD055510 and HD02274, 90DD0596, and HD040661), National Center for Advancing Translational Sciences (NCATS) (UL1 TR000002) and the MIND Institute IDDRC U54HD079125.

###

Study:  Schneider et al. “Elevated FMR1-mRNA and lowered FMRP – A double-hit mechanism for psychiatric features in men with FMR1 premutations,” Translational Psychiatry.

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202006_project-baby-bear-shows-genomic-sequencing-for-infants-in-intensive-care-yields-life-changing-benefits-and-medical-cost-savings- Thu, 18 Jun 2020 07:00:00 GMT Project Baby Bear shows genomic sequencing for infants in intensive care yields life-changing benefits and medical cost savings <p>In a pilot program funded by the State of California, Project Baby Bear demonstrated that a rapid precision medicine program for critically ill babies enrolled in Medi-Cal produced better health outcomes and reduced suffering for the infants while decreasing the cost of their care. UC Davis Children&rsquo;s Hospital was one of five participating hospitals statewide in the pilot program. The pilot program was started at Rady Children&rsquo;s Hospital-San Diego.</p> In a pilot program funded by the State of California, Project Baby Bear demonstrated that a rapid precision medicine program for critically ill babies enrolled in Medi-Cal produced better health outcomes and reduced suffering for the infants while decreasing the cost of their care. UC Davis Children’s Hospital was one of five participating hospitals statewide in the pilot program. The pilot program was started at Rady Children’s Hospital-San Diego.

Using the most comprehensive genomic test available – rapid Whole Genome Sequencing (rWGS) – Project Baby Bear analyzed the genetic code of 178 infants to provide doctors and families with vital diagnostic information that empowered them to make life-altering medical decisions resulting in shorter hospital stays, fewer invasive procedures and targeted personalized care.

Project Baby Bear helped doctors identify the exact cause of rare, genetic diseases in an average of three days, instead of the four to six weeks standard genetic testing offers. This allowed physicians to deliver timely treatment tailored to the baby’s specific condition.  

Project Baby Bear was funded by the State of California as a $2-million Medi-Cal pilot aimed at examining the benefits of using rWGS to help improve outcomes for infants hospitalized in intensive care with undiagnosed illness and whether the use of this technology would be cost effective.

“Project Baby Bear allowed us to provide accurate diagnosis in more than a third of the tested seriously ill neonates and infants, and, it impacted their management. The essence of this genome project was the clinical acumen and collaboration of the entire patient care team combined with the comprehensiveness of the genetic test and the speed with which results were turned around allowing diagnoses of diseases that are ‘one in a million’ to be made," said Suma Shankar, director of the UC Davis Precision Genomics Clinic and co-lead of the UC Davis site for Project Baby Bear.

Patient blood samples were sent to Rady Children's Institute for Genomic Medicine for sequencing and interpretation from the California Children’s Services accredited regional neonatal and pediatric intensive care units at UC Davis Children’s Hospital, UC San Francisco Benioff Children’s Hospital Oakland, Valley Children’s Hospital, CHOC Children’s Hospital and Rady Children’s Hospital-San Diego.

The UC Davis Precision Genomics Clinic already uses whole genome sequencing for children with undiagnosed, often congenital, conditions to find the underlying genetic causes and improve their care. 

"Genetic disorders are common in the population and that is why the California state newborn screening program is so critical to screen for genetic disorders early in one’s life. However, there are over 20,000 genes in our genome, thus only a handful of disorders are screened in the newborns period. Rapid whole genome sequencing is not science fiction or experimental – Project Baby Bear has demonstrated that rapid sequencing in newborns save lives and is actually cost effective, and has shown how next generation sequencing has revolutionized the process of making complex diagnoses in pediatric medicine in a matter of days,” said Katherine Rauen, chief of genomic medicine at UC Davis Children's Hospital and co-lead of the UC Davis site for Project Baby Bear.

Download the Project Baby Bear Final State Report. 

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https://health.ucdavis.edu/health-news/mindinstitute/project-baby-bear-shows-genomic-sequencing-for-infants-in-intensive-care-yields-life-changing-benefits-and-medical-cost-savings-/2020/06
202006_nih-grant-funds-a-new-study-of-infants-at-higher-risk-for-adhd-and-asd Thu, 11 Jun 2020 07:00:00 GMT NIH grant funds a new study of infants at higher risk for ADHD and ASD <p>A $3.65 million grant from NIH to fund Meghan Miller&rsquo;s study of autism and ADHD markers in babies.</p> In the U.S., about 1 in 54 children has been identified with autism spectrum disorder (ASD), and approximately 5-8% of children are diagnosed with attention-deficit/hyperactivity disorder (ADHD). Previous studies show that younger siblings of children with ASD or ADHD have higher risks for both disorders.

Meghan Miller, assistant professor in the Department of Psychiatry and Behavioral Sciences and UC Davis MIND Institute, was awarded a $3.65 million, five-year grant from the National Institute of Mental Health (NIMH) to fund her “Learning about Autism and ADHD Markers in Babies” (LAAMB) study.

“We are thrilled that this grant will help support our work in investigating early signs of social communication and self-regulation difficulties among infants at risk,” Miller said. “Through this study, we hope to develop a better understanding of early indicators of ASD and ADHD.”

The LAAMB study will focus on infant siblings of typically developing children and on infants with at least one older sibling diagnosed with ADHD or ASD. Researchers will follow the development of the infants between 6 and 36 months of age and monitor their attention skills, emotion regulation, self-control, and social and communication skills. Their assessments include eye tracking, physiological regulation (e.g., heart rate) measurements and interactive play tasks.

“By learning more about the links between self-regulation and social communication problems during early development, we hope to help improve early detection of ASD and ADHD,” Miller said.

Findings from the study may also help inform the development of interventions for infants and toddlers at risk of ADHD or ASD.  

Co-investigators on the project include Greg Young (UC Davis Department of Psychiatry and Behavioral Sciences, MIND Institute), Ana-Maria Iosif (UC Davis Department of Public Health Sciences) and Erica Musser at Florida International University (Department of Psychology). 

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202006_special-performance-on-facebook-live-supports-autism-community Tue, 09 Jun 2020 07:00:00 GMT Special performance on Facebook Live supports autism community <p>The Balcony theater group and the MIND Institute are hosting an event streamed on the MIND&rsquo;s Facebook page in support of the autism community on June 13 at 5 p.m. PT. The event includes an expert panel discussion and a performance of <em>Through Andrew&rsquo;s Eyes</em> play.</p> The Balcony theater group, in collaboration with the UC Davis MIND Institute, is hosting a Facebook Live event in support of the autism community on June 13 at 5 pm PT. The event (see flyer), streamed on the MIND’s Facebook page, includes a 30-minute expert panel on building awareness around autism, followed by a 90-minute live performance of Through Andrew’s Eyes, a play by Oscar Cabrera featuring neuro-diverse actors.


Blythe Corbett (Professor of psychiatry and behavioral sciences at Vanderbilt University Medical Center), Janet Grillo (Award winning filmmaker, professor at NYU Tisch Film School), Leonard Abbeduto (Director of UC Davis MIND Institute), Alex Plank (Actor on ABC’s The Good Doctor and creator of Wrong Planet), Patricia Wright (Senior vice president, program development at NEXT for AUTISM)

The expert panel will feature:

  • Leonard Abbeduto (Director of UC Davis MIND Institute)
  • Janet Grillo (Award winning filmmaker, professor at NYU Tisch Film School and mother of a son with autism)
  • Patricia Wright (Senior vice president, program development at NEXT for AUTISM)
  • Alex Plank (Actor on ABC’s The Good Doctor and creator of Wrong Planet)
  • Blythe Corbett (Professor of psychiatry and behavioral sciences at Vanderbilt University Medical Center, director of SENSE Lab and SENSE Theatre®)

Synopsis of Through Andrew’s Eyes:

Andrew is a 22-year-old diagnosed with Autism. Andrew’s family struggles to move forward, feeling limited and trapped by issues both external and internal. When Andrew’s brother returns from college for the holidays, the person inside Andrew begins to speak his mind, but can Andrew be truly understood?

Through Andrew’s Eyes is a story about how people transcend their differences to find common ground, love, and a shared sense of humanity.

The event is organized and produced by Nathaniel Ansbach, a native Californian actor and theater maker who co-created The Balcony, an online venue to connect theater artists around the globe. The Balcony creates in-house content, facilitates workshops, rehearsals and performances among actors, writers and directors worldwide, and shares original theater with viewers at home. It has been streaming live performances via Zoom and Instagram LIVE since March 2020.

For more information about the event, contact Nadine Yehya, nyehya@ucdavis.edu.

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The UC Davis MIND Institute is a collaborative international research center, committed to the awareness, understanding, prevention and treatment of the challenges associated with neurodevelopmental disabilities.

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202005_autism-severity-can-change-substantially-during-early-childhood Thu, 28 May 2020 07:00:00 GMT Autism severity can change substantially during early childhood <p>Kids with autism may have a change in their symptom severity during childhood. Around 30% of them have less symptoms by age 6.</p> During early childhood, girls with autism tend to show greater reduction and less rise in their autism symptom severity than boys with autism, a UC Davis MIND Institute study has found.

Early childhood is a period of substantial brain growth with critical ability for learning and development. It also is the typical time for an initial diagnosis of autism and the best time for early intervention. In the U.S., about 1 in 54 children has been identified with autism spectrum disorder (ASD), with four times as many boys with ASD as girls.

Previous studies indicated inconsistent results in terms of changes in autism severity during childhood. The general sense was that the severity of autism at diagnosis would last a lifetime.

The MIND Institute’s study, published May 14 in the Journal of Autism and Developmental Disorders, evaluated changes in symptom severity in early childhood and the potential factors associated with those changes. It included 125 children (89 boys and 36 girls) with ASD from the Autism Phenome Project (APP), a longitudinal project in its 14th year at the MIND Institute. The children received substantial community-based autism intervention throughout their childhood.

The researchers used a 10-point severity measure called the ADOS Calibrated Severity Score (CSS) derived from the Autism Diagnostic Observation Schedule (ADOS), the gold standard assessment tool in autism research. They computed a severity change score for participants as the difference between their ADOS CSS scores at age 6 and at age 3. A change of two points or more was considered a significant change in symptom severity.

Change in severity of autism symptoms and optimal outcome

The study classified participants based on their severity change score into a Decreased Severity Group (28.8%), a Stable Severity Group (54.4%) and an Increased Severity Group (16.8%). One key finding was that children’s symptom severity can change with age. In fact, children can improve and get better.

“We found that nearly 30% of young children have less severe autism symptoms at age 6 than they did at age 3. In some cases, children lost their autism diagnoses entirely,” said David Amaral, a distinguished professor of psychiatry and behavioral sciences, faculty member at the UC Davis MIND Institute and senior author on the study.

“It is also true that some children appear to get worse,” Amaral said. “Unfortunately, it is not currently possible to predict who will do well and who will develop more severe autism symptoms and need different interventions.”

Optimal outcome is a standard achieved when someone previously diagnosed with ASD no longer meets autism diagnostic criteria due to loss of autism symptoms. In this study, seven participants (four girls and three boys) had an ADOS CSS below the ASD cutoff at age 6, potentially indicating optimal outcome. Children showing decreasing symptom severity had better adaptive skills in multiple domains compared to those in the stable or increased severity groups.

Girls with autism and camouflaging as a coping strategy

Girls and boys might be characterized with different manifestations of autism symptoms. Girls might show better developmental results than boys in cognition, sociability and practical communication skills.

“We found that girls with autism decrease in severity more than boys and increase in severity less than boys during early childhood,” said Einat Waizbard-Bartov, a graduate researcher at the MIND Institute and the first author of the paper.

One possible explanation for this difference is the girls’ ability to camouflage or hide their symptoms, according to Waizbard-Bartov. Camouflaging the characteristics of autism includes masking one’s symptoms in social situations. This coping strategy is a social compensatory behavior more prevalent in females diagnosed with ASD compared to males with ASD across different age ranges, including adulthood.

“The fact that more of the girls appear to have decreased in autism severity may be due to an increasing number of girls compared to boys who, with age, have learned how to mask their symptoms,” Waizbard-Bartov said. “We will explore this possibility in future studies.”

IQ, initial severity and change in autism severity

The study also found that IQ had a significant relationship with change in symptom severity. Children with higher IQs were more likely to show a reduction in ASD symptoms.

“IQ is considered to be the strongest predictor of symptom severity for children with autism,” Waizbard-Bartov said. “As IQ scores increased from age 3 to age 6, symptom severity levels decreased.”

The researchers could not identify a relationship between early severity levels and future symptom change. Surprisingly, the group of children with increased symptom severity at age 6 showed significantly lower severity levels at age 3, and their severity scores were less variable than the other groups.

The study raises several issues for further investigation, such as the relationships between IQ, initial severity level, and type and intensity of intervention received, in relation to symptom change over time.

This research was supported by grants from the National Institutes of Health (NIH) (R01MH103371, R01MH104438, R01MH106518, R01MH104438, R01MH103284 and T32 MH073124) and by an Autism Center of Excellence grant awarded by the National Institute of Child Health and Development (NICHD) (P50 HD093079). It also was supported by the MIND Institute Intellectual and Developmental Disabilities Research Center (U54HD079125) and the Simons Foundation.

Other authors on this study are Emilio Ferrer from the UC Davis Department of Psychology, and Brianna Heath, Gregory S. Young, Sally Rogers, Christine Wu Nordahl and Marjorie Solomon from the UC Davis Department of Psychiatry and Behavioral Sciences.

Article: Waizbard-Bartov et al. (2020). Trajectories of Autism Symptom Severity Change during Early Childhood. Journal of Autism and Developmental Disorders. https://link.springer.com/article/10.1007/s10803-020-04526-z

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202005_depression-symptoms-linked-to-reduced-cognitive-control-in-people-with-autism Tue, 19 May 2020 07:00:00 GMT Depression symptoms linked to reduced cognitive control in people with autism <p>Symptoms of depression in young adults with autism were linked to less proactive cognitive control, a new UC Davis MIND Institute study has found.</p> According to a UC Davis study, adolescents and young adults with autism spectrum disorder (ASD) and those with typical development show similar proactive cognitive control. However, symptoms of depression in individuals with autism were linked to less proactive control.

Cognitive control refers to a set of mental processes that coordinate thoughts and behaviors to fit one’s goals and intentions. One type of cognitive control is proactive control, characterized by being actively ready and prepared by focusing on goal-relevant information ahead of time.

“Proactive control is a very important cognitive function that allows you to plan and prepare how to direct your attention. It allows you to follow directions or achieve certain goals without getting distracted,” said Marie Krug, assistant project scientist in the Solomon Lab at the UC Davis MIND Institute and lead author of the study.

Autism, depression symptoms and cognitive control

In this study, published May 14 in the Journal of Abnormal Psychology, the researchers examined whether proactive control is different in adolescents and young adults with ASD than in individuals with typical development. They also studied how repetitive behaviors (a symptom of ASD) and psychological disorders (such as depression, anxiety and attention-deficit/hyperactivity disorder) are related to proactive control.

The study  consisted of 88 participants (44 with ASD and 44 with typical development) between the ages of 12 and 22. The participants were enrolled in the Cognitive Control in Autism (CoCoA) Study at the UC Davis MIND Institute.

The researchers assessed proactive control using a picture-word Stroop test. They asked participants to name animals depicted in drawings with a superimposed word. They calculated “interference effects” by measuring the difference in the participants’ reaction time between difficult incongruent trials (with nonmatching animal pictures and words) and simpler congruent trials (with matching animal pictures and words). They used two versions of the Stroop task: a mostly congruent block and a mostly incongruent block.

The researchers calculated proactive control as the reduction in the participant’s interference effect for the mostly incongruent block compared to the mostly congruent block.

The study did not find any association between proactive control and repetitive behaviors, anxiety or attention-deficit/hyperactivity problems in the ASD group. Participants with autism who had more symptoms of depression showed less ability to implement proactive control.

People with autism experience depression four times more often than their neurotypical peers. One key symptom of depression is rumination, the act of dwelling on negative thoughts. Rumination may drain or limit cognitive resources needed to exercise proactive control. This was especially true in mostly incongruent blocks where cognitive resources are needed the most.

“This study helps us better understand the cognitive strengths and challenges in persons with autism,” said Marjorie Solomon, professor of psychiatry and behavioral sciences at UC Davis and senior author of the study. “It also provides clues on the impact of co-existing conditions such as depression on these persons with autism, and thereby aids researchers with treatment development.”

This work was funded by the National Institute of Mental Health (R01 MH106518-01A1).  It also received recruitment and statistical support from the MIND Institute Intellectual and Developmental Disabilities Research Center (IDDRC) which is funded by the National Institute of Child Health and Human Development (NICHD) (U54 HD079125).

Other authors on this study are Matthew Elliott, Andrew Gordon and Jeremy Hogeveen.

Article: Krug, M. K., Elliott, M. V., Gordon, A., Hogeveen, J., & Solomon, M. (2020). Proactive control in adolescents and young adults with autism spectrum disorder: Unimpaired but associated with symptoms of depression. Journal of Abnormal Psychology. https://doi.org/10.1037/abn0000527

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202005_uc-davis-researchers-get-3-million-fast-grant-to-find-treatment-for-angelman-syndrome- Thu, 14 May 2020 07:00:00 GMT UC Davis researchers get $3 million FAST grant to find treatment for Angelman syndrome <p>Two UC Davis researchers receive $3 million grant to find an effective treatment for Angelman syndrome, a rare neurodevelopmental disorder.</p> Two UC Davis MIND Institute researchers have been awarded a $3 million grant to advance their work in finding effective treatment for Angelman syndrome, a rare neurodevelopmental disorder.

Angelman syndrome occurs in one in 15,000 births. It is caused by the loss of expression of a protein made by the UBE3A gene in the brain cells. This gene plays a critical role in the function of the body’s nervous system. It leads to seizures, sleep disturbances, impaired communication development and motor and balance deficits.

Jill Silverman, associate professor in the Department of Psychiatry and Behavioral Sciences, and David Segal, professor of biochemistry and molecular medicine and faculty member in the UC Davis Genome Center, received the grant from the Foundation for Angelman Syndrome Therapeutics (FAST) to pursue treatments for the neurologic disease.

The researchers will use the grant funding to repurpose existing drugs and to screen for new ones. The grant will help create an infrastructure for testing potential therapeutics in rodent models of Angelman syndrome. In addition, it will fund the screening of compounds in brain cell neurons to determine what can turn the UBE3A on. The researchers will also explore non-UBE3A based therapies and look for ways to improve the symptoms of Angelman syndrome.

Collaborations to find cure to Angelman syndrome

The grant builds on the established collaboration between Segal’s Lab, with expertise in molecular analysis, and Silverman’s Lab, with expertise in behavioral research. This collaboration facilitates rapid testing of new compounds in cell, tissue and rodent models of Angelman syndrome. It also extends into training the next generation of researchers working on this rare disease.

“The close collaboration between our labs, the ongoing collaborations with other investigators at UC Davis and the support of the MIND’s Intellectual and Developmental Disabilities Research Center (IDDRC) provide the right combination to ensure that the experiments will be performed in a comprehensive and timely manner,” Silverman said.

The Silverman Lab tests the safety and efficacy of potential therapies on rodent models, and assesses improvements of symptoms such as cognitive abilities, gross and fine motor dysfunction, sleep disruption and seizures.

“While the technologies exist to test many therapeutics in cells and live animal models, the federal funding agencies are not always able to support such testing for the thousands of rare disorders,” Segal said. “That’s where patient advocacy groups such as FAST step in.”

Past FAST funding has enabled Segal’s Lab to create proteins that could turn on the affected gene in mouse models of Angelman syndrome. The Segal and Silverman labs have also worked with other FAST-funded researchers to create and characterize the first rat model of Angelman syndrome, which was reported January 2020 in Translational Psychiatry.

“FAST is enormously excited to fund the laboratories of Dr. Segal and Dr. Silverman to build a solid research infrastructure that can thoroughly evaluate multiple potential therapeutics for the treatment of Angelman syndrome,” said Paula Evans, chair and founder of FAST. “We are so appreciative of their personal and professional commitment to improving the lives of individuals with Angelman syndrome.”

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202005_during-covid-19-online-gaming-helps-teens-with-autism-build-their-social-skills Mon, 11 May 2020 07:00:00 GMT During COVID-19, online gaming helps teens with autism build their social skills <p>Online video gaming helps children with autism socialize during COVID-19.</p> Many people are reporting feeling socially isolated during the COVID-19 pandemic. This isolation is harder on children with autism.

Children with autism may show minimal social initiation and poorly coordinated interaction with others. This makes social interactions challenging for some of them and might lead to delays in development and experiences of teasing and bullying.

But the UC Davis MIND Institute has found a new tool for helping children with autism socialize: online video gaming.

The social skills program at the MIND Institute

In 2000, Marjorie Solomon, professor of psychiatry and behavioral sciences, set up a social skills program at the UC Davis MIND Institute. The program offers children with autism a way to connect with others and build their social skills.

From December to June each year, the program runs simultaneous child groups, parent psycho-educational workshops and sibling support groups. These groups are currently overseen by Danielle Haener, with assistance from psychologists Elizabeth Solomon Loyola and Megan Tudor, and post-doctoral fellows and volunteers. This year, the program has three groups of 26 children, ages between 8 and 17.

Building social skills of children with autism during a pandemic

Halfway through the program, COVID-19’s shelter-in-place orders in California put on hold the weekly, face-to-face group meetings. With the new physical distancing rules and school closures, the children had substantially fewer opportunities to socialize.

The program providers responded by developing online gaming sessions to keep members connected and to continue their social skills development. They chose suitable games from the JackBox party pack to play over Zoom.

“Our goal is to provide a sense of continuity, community and connection in the midst of uncertainty and adversity,” said parent group leader Romie Stanislavsky.

The first virtual social skills teen game night on April 14 was a roaring success.

The teens practiced many of the skills learned in regular groups, including reciprocal conversation, appropriate use of humor and turn taking. It was also an opportunity to learn online etiquette.

The game night provided a space for everyone to show humor, cheer each other on and practice good sportsmanship. According to the program leaders, the teens’ individual personality traits were not hindered by the online environment, even for the shy ones among them.

“We heard laughter, jokes, stories and most importantly, we got to see our teens and tweens have fun again,” said teen group co-leader Konner Davis.

The teens said that they enjoyed the experience immensely, describing the session as “the best” and “can’t wait until next time.”

The team behind taking social skills program online

This tremendous success would not have been possible without the social team who worked hard to communicate with families about the new services. The team also set up tutorials to help families familiarize themselves with Zoom and WebEx.

In addition, the MIND Institute’s administration strongly encouraged this virtual outreach to facilitate a supportive environment for the children and their families. While the MIND Institute plans to resume in-person social skills program once restrictions are lifted, they now have an additional tool in their repertoire to connect and build skills.

The team also hopes to see game developers work on methods to include teleconferencing with party pack games to provide more opportunities for virtual socialization.

Since its inception in 2000, the social skills program has served more than 700 children and families.

Families with a child or young adult who may benefit from social skills intervention can  reach out to Caryn Chalmers at cxchalmers@ucdavis.edu.

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