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. 202107_uc-davis-psychology-chair-named-to-key-federal-committee-on-autism Fri, 09 Jul 2021 07:00:00 GMT UC Davis psychology chair named to key federal committee on autism <p>Susan Rivera, psychology professor and chair and faculty member of the MIND Institute and Center for Mind and Brain, has been named to the Interagency Autism Coordinating Committee. The federal committee provides guidance and recommendations on autism research, services, and policy.</p> UC Davis Department of Psychology Professor and Chair Susan Rivera has been named to the Interagency Autism Coordinating Committee (IACC). Rivera is also a faculty member of the MIND Institute and the Center for Mind and Brain. She was appointed, along with 21 others, by U.S. Secretary of Health and Human Services Xavier Becerra to a three-year term, which starts immediately.

The IACC is a key advisory committee which includes public stakeholders and federal officials. It provides guidance and recommendations to the Secretary of Health and Human Services on autism research, services and policy.

“I am honored to have the opportunity to serve on this committee,” said Rivera, who was nominated by Center for Mind and Brain Director, George (Ron) Mangun. MIND Institute Director Leonard Abbeduto also supported her nomination.

“Being involved in formulating recommendations for autism research, services and policy holds deep meaning for me. It provides a way of using the knowledge I’ve gained over my many years of conducting autism research and participating in advocacy efforts to help shape these agendas,” Rivera explained.  

Rivera has been doing scientific research on autism for two decades. Her lab uses brain imaging and eye tracking techniques to investigate how underlying brain activity and behavior support the development of skills like attention, visual perception, face processing, sensory processing and emotion regulation. These skills are necessary for adaptive cognitive and social-emotional well-being.

A focus on neurodiversity

The new committee members include researchers like Rivera, autism self-advocates, parents and family members of those with autism, clinicians and representatives of service and advocacy groups, making it the largest and most diverse IACC yet.

“I hope the work I do on the committee will both help deepen the public’s understanding of autism, and positively impact the lives of individuals with autism.”

— Susan Rivera

Rivera, who is devoted to championing the tenets of neurodiversity and advocacy to the public and academic communities, applauds the inclusion of more representatives from the autism community.

“I’m very excited to see the significant number of self-advocates on the panel. Given the combination of individuals who can speak to the lived experiences of autism and researchers and clinicians that can speak to science and new discoveries in the field, I think the committee is well-poised to make significant progress in formulating recommendations for the Health and Human Services Secretary,” she said.

Rivera noted that she’d like to see a shift toward more involvement from autism advocates in shaping research funding priorities.

In addition to the 22 newest appointees, the IACC also includes 23 new and returning federal officials who represent federal agencies and departments that serve the autism community in areas such as biomedical research, education and health care.

Rivera is not the first UC Davis MIND Institute faculty member to serve on the IACC. David Amaral, distinguished professor in the Department of Psychiatry and Behavioral Sciences and Marjorie Solomon, professor of clinical psychiatry in the Department of Psychiatry and Behavioral Sciences and associate director of the MIND Institute, were on the committee previously.

The appointment involves a significant time commitment and broad duties, such as monitoring autism research, services and support activities, developing a summary of significant advances in these areas and making recommendations, as well as developing a strategic plan for the conduct of and support for autism research. Major projects include the IACC Strategic Plan for Autism Spectrum Disorder (ASD) and the Summary of Advances in ASD Research.

For Rivera, it’s well worth the effort. “I hope the work I do on the committee will both help deepen the public’s understanding of autism, and positively impact the lives of individuals with autism,” she said.  

The new IACC will hold its first public meeting July 21-22.

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202107_tips-for-a-sensory-friendly-july-4th-- Thu, 01 Jul 2021 07:00:00 GMT Tips for a sensory-friendly July 4th <p>The Fourth of July is often characterized by fireworks, parades and celebrations, which can be challenging for some individuals with autism and other neurodevelopmental conditions. A UC Davis MIND Institute expert offers some tips to make the holiday celebrations more comfortable.<strong>&nbsp; </strong></p> The Fourth of July holiday often includes fireworks and parades, backyard barbecues and neighborhood festivals – all of which can be overstimulating for some individuals with neurodevelopmental conditions like autism.

Sarah Dufek, an autism expert with the UC Davis MIND Institute, says there are ways to make some of the louder, more chaotic celebrations more comfortable.

“In many cases, preparation before an event, along with a few key supplies, can help a great deal,” she said.

Dufek, an assistant professor of clinical psychology in the Department of Psychiatry and Behavioral Sciences at UC Davis Health, offers these tips for families, which may be useful for Independence Day – and at many other times of the year:

  • Keep it short. “Consider bringing your child for just part of an event,” suggested Dufek. “Maybe take your child just for the fireworks – or maybe take your child to the party or picnic but watch the fireworks from the car.”
  • Location matters. “Try to create a situation where your child can retreat easily, such as a home with a view of fireworks, where a quiet room is available if they need a break from the noise and lights,” she explained.
  • Preparation is key. Build excitement while helping your child know what to expect by reading Fourth of July-themed books and watching videos of fireworks “It can also be helpful to choose books or videos that incorporate your child’s interests,” Dufek said. “For example, if your child enjoys Disneyland themes, you could watch Disneyland fireworks displays on YouTube.” Social stories like this one, which provide step-by-step visuals of what to expect, can also be very helpful.
  • Bring helpful supplies. If your child enjoys sensory or fidget toys, bring those with you. Art supplies or other favorite portable activities can be a positive outlet, too. Also consider headphones for children who are sensitive to loud sounds. Having plenty of familiar snacks and drinks available can also be helpful.
  • Make safety a priority. During preparation, make sure to focus on safety around fireworks. During the event itself, you can also use visuals to help enforce safety. “For example, use bright caution tape to mark off areas your child should avoid in order to stay safe – this works for other children and adults, too!” Dufek said. “Ask other adults to consistently use a countdown when setting off a firework to ensure everyone knows what’s about to happen. If you’re celebrating near a body of water, it’s critical to make sure adults are acting as ‘water watchers’ in shifts to ensure water safety for children.”
  • Ask for help. Be clear with other adults around you about how they can help make the event comfortable for your child. “Often, others want to help but don’t know how,” explained Dufek.
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202106_new-covid-19-vaccine-clinic-for-people-with-autism-other-neurodevelopmental-conditions-video Thu, 24 Jun 2021 07:00:00 GMT New COVID-19 vaccine clinic for people with autism, other neurodevelopmental conditions (video) <p>The UC Davis MIND Institute is offering a new COVID-19 vaccine clinic for individuals with autism and other neurodevelopmental conditions. The clinic will offer a comfortable experience for families, including sensory support and specially trained staff.</p>
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(SACRAMENTO, Calif.) — The UC Davis MIND Institute has launched a new COVID-19 vaccine clinic, custom-designed for individuals with autism, Down syndrome, fragile X syndrome and other neurodevelopmental conditions.

The typical COVID-19 vaccine clinic – often a large, noisy space – can be overwhelming for children with these conditions, who often face anxiety and challenges with sensory overload. The new MIND Institute clinic offers the opposite experience.

“This clinic really focuses on quality rather than quantity,” explained Scott Akins, director of UC Davis Developmental-Behavioral Pediatrics and director of clinical programs at the MIND Institute. “We want to provide an inclusive, supportive experience for families, so we’re vaccinating three families per hour, which allows us to have three quiet rooms, an uncrowded waiting area and staff fully dedicated to each patient.”


13-year-old Freddie Miller plays with a pop-it toy before receiving his first COVID-19 shot, with the sensory machine in the background.

The COVID-19 clinic is open one day per week (Thursday or Friday), from 9 a.m. – 3 p.m. It’s available for all individuals with neurodevelopmental conditions and their family members, ages 12 and older, regardless of health care provider or insurance status.

Customized care for each patient

The clinic is being funded in part through a $68,000 grant from the Centers for Disease Control and Prevention to the MIND Institute’s Center for Excellence in Developmental Disabilities. It’s unique because child life specialists, trained in helping children with neurodevelopmental conditions cope with medical procedures, are involved at every step of the vaccination process.

“It’s really important that as child life specialists, we look at the development of the child, because you may have a 20-year-old who’s developmentally less mature, so we want to be able to prep them in a way that is matched to what they understand and need,” said Erin Roseborough, a child life specialist at the MIND Institute.

She and her colleagues contact the family of each patient who has an appointment beforehand to find out what the child’s needs and interests are. They also share information about what to expect, so that there are no surprises.

“We develop an individualized coping plan with the family ahead of their arrival,” explained Veronica Tuss, another child life specialist at the MIND Institute. “We provide preparation materials such as a social story, which is a step-by-step description, with photos, of what to expect at each stage of the appointment, starting in the parking lot.”

“We want to provide an inclusive, supportive experience for families, so we’re vaccinating three families per hour, which allows us to have three quiet rooms, an uncrowded waiting area and staff fully dedicated to each patient.”

— Scott Akins

A sensory-friendly environment

Patients receive the COVID-19 vaccine in a room equipped with a comfortable chair and a large sensory machine that contains a calming tube of bubbles and can utilize lights, aromatherapy and a projector that displays images on the ceiling. Other sensory items available include squeeze balls and pop-it toys, and a big selection of unique bandages shaped like doughnuts, tacos, ninjas and more.

After being vaccinated, patients spend a 15-minute observation period in a quiet room. “This area is really important for our patients,” noted Akins. “Many children are dysregulated immediately after a blood draw or a vaccine.”

Child life specialists set the room up specifically to cater to each patient’s interests. “One recent patient was into art, so we had drawing supplies all set up for her and ready to go, and she colored the whole time,” said Roseborough.

Video games are also available, which was great news for 13-year-old Freddie Miller, who received his first Pfizer shot last week.

“I was kind of nervous getting the shot,” said Miller, who has autism and enjoyed playing with a yellow, pineapple-shaped pop-it toy while sitting in the vaccine chair. “It’s just a little bit of a pinch. It wasn’t that bad.”

Miller’s mom, Syerra Logan, was glad she brought him to the MIND Institute for his first vaccine dose. “I wanted a more controlled environment that wasn’t so chaotic for him. The loud noises can really trigger some of his anxieties and so I wanted to bring him here where it’d be a little more quiet and neutral,” she explained.

Miller picked out some applesauce for a snack while he played video games after the shot.


Patients can choose from a fun selection of bandages after their shot.

Logan, who is an ambulatory care administrative supervisor at UC Davis Health, was thrilled with the outcome. “It went amazing! He got a little bit nervous right before we started, but the rest of the process has been smooth,” she said. “It’s a relief to know he’s a bit more protected, especially when we’re going out, and I’m excited to get him the second one just to protect us a little bit more.”

Vaccination helps protect against COVID-19, and early research indicates that the vaccines may also help people from spreading the virus to others. The vaccine can also help keep people from getting seriously sick if they do contract COVID-19.

“Many families asked the question, ‘Have other individuals with autism or other neurodevelopmental disabilities had this vaccine and is this vaccine safe for people with my healthcare condition?’” said Akins. “That was a really common concern, and now six months into vaccinating, we do know that is it safe for all individuals, including those with autism and other neurodevelopmental disabilities.”

Learn more about how to make an appointment at the MIND Institute vaccine clinic. You can also call 916-703-5555.

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202106_long-standing-genomic-medicine-partnership-expands-specialty-care-for-children-in-region--video Tue, 22 Jun 2021 07:00:00 GMT Long-standing genomic medicine partnership expands specialty care for children in region <p>A seven-year telemedicine partnership between the UC Davis MIND Institute and Dignity Health ensures that more children with genetic disorders receive quick, convenient specialty care. The success is due to high-quality robots and a commitment to improving access to genomic medicine.&nbsp;</p> When Katherine Rauen was recruited by the UC Davis MIND Institute seven years ago, one of the first things she did was pay a visit to Dignity Health Mercy San Juan Medical Center in Carmichael. The MIND Institute’s Genomic Medicine Division, in the Department of Pediatrics, had a relationship with Dignity Health, offering in-person consultations for pediatric patients, and Rauen, a physician-scientist and geneticist, wanted to strengthen it.

“I really wanted to develop a telemedicine relationship, what I call TeleGenomics,” said Rauen, who is now an emeritus professor, and was the chief of the Genomic Medicine Division for many years. “I visited the neonatal intensive care unit (NICU) and met firsthand with an incredible team of neonatologists and saw that they had amazing telemedicine capabilities because Dignity was a very early adopter of this up and coming technology. They have state-of-the-art, powerful, capable telemedicine robots.”

Now, the two health systems have a round-the-clock genomic medicine partnership. The robots are equipped with high-quality cameras that allow MIND Institute specialists to provide consultations for Dignity Health patients at Mercy San Juan and Methodist Hospital of Sacramento. 

“It’s a robust working relationship, providing genomic medicine consultation, and we’re available to them 24/7,” said Rauen. “We’ve got phenomenal, well-trained physicians and physician-scientists on our faculty here at the MIND Institute and we have exceptionally trained genetic counselors -- they have access to all of this.”

“We’re a major metropolitan area. This standard of care should be an expectation for our families. It’s so important to build community bridges - this is our job.”

— Katherine Rauen

What is TeleGenomics?

Throughout the pandemic, telemedicine has become more common, but when the genomic medicine partnership was established, it was less frequently used.  

“Many people had doubts at the time that we would be able to do a thorough physical examination for genomics, but the telemedicine robot is so powerful, I could see moles on a newborn’s skin, I could see tiny tufts of hair. The imagery is powerful.”

The consultations are requested for a variety of reasons. For example, when a child born at Methodist Hospital or Mercy San Juan has multiple congenital anomalies, such as heart or skeletal defects, isn’t eating properly, or has features that are consistent with Down syndrome.


Katherine Rauen, professor emeritus, Department of Pediatrics and former Division of Genomic Medicine chief

“Instead of having to transfer the child to UC Davis Health for genomic medicine input, they just give us a call through TeleGenomics and we go to them virtually,” Rauen explained.

The bedside nurse assists as needed, and the examination is done almost entirely using the camera.

“We can see skin findings, toenails, creases on the palms and soles and sacral pits [indentations in the skin of the lower back]. It works out very, very well,” Rauen said.

The genomic medicine specialist makes recommendations and shares them with the family and Dignity Health physician, and every patient receives follow-up care.

“Whether you’re in-patient at UC Davis, or you’re at Methodist or Mercy San Juan being seen through telemedicine, there is an automatic follow-up to see how the child’s doing and to follow up on genetic testing,” Rauen noted.

Regional excellence

Rauen is passionate about the partnership between UC Davis Health and Dignity Health.

“We’re a major metropolitan area. This standard of care should be an expectation for our families. It’s so important to build community bridges, and this is our job. Medicine transcends race, creed, color, religion. We have taken an oath to place people’s health above all and we take this very seriously.”

Genomic Medicine at UC Davis Health

The Genomic Medicine Division specializes in the evaluation and treatment of genetic disorders and offers whole genome sequences. The division includes a number of different clinics, including:
• Genomic Medicine - General Clinic
NF/Ras Pathway Genomic Medicine Clinic
Metabolic Clinic
Lysosomal Storage Disorders Clinic
Neurogenomics Clinic
Ocular Precision Genomics Clinic
TeleGenomics Clinic

Rauen, who worked at UC San Francisco for 20 years before coming to the MIND Institute, has a saying about the kind of care patients in the region should receive: “My mantra, having come from UCSF, is that not one of our patients should have to cross a bridge to get exceptional care.” she said.  

“We really appreciate the service that UC Davis Health Genomic Medicine provides at Mercy San Juan. When we have a baby who needs a genetic evaluation, we are able to readily access the genomic physicians and counselors and discuss our concerns,” said Carolyn Getman, medical director, Neonatal Intensive Care Unit, Dignity Health Mercy San Juan Medical Center. “The ability to use telemedicine for the consultation facilitates a rapid evaluation and allows the geneticist to discuss a baby's care with the parents at the bedside in a timely manner. We are grateful for this collaboration.”

Related stories

Project baby bear shows genomic sequencing for infants in intensive care yields life-changing benefits and medical cost savings


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202106_local-foundation-awards-125-million-to-mind-institute-to-study-rare-genetic-condition Mon, 21 Jun 2021 07:00:00 GMT Local foundation awards $1.25 million to MIND Institute to study rare genetic condition <p>RDM Positive Impact Foundation is sponsoring a $1.25 million project at the UC Davis MIND Institute to advance research about SYNGAP1, a rare genetic condition that impacts the brain across the lifespan. An interdisciplinary team is seeking revolutionary solutions.</p> The RDM Positive Impact Foundation is funding an ambitious $1.25 million research project at the UC Davis MIND Institute to study SYNGAP1. The rare genetic condition causes seizures (epilepsy), intellectual disability and developmental delays. It is also highly associated with autism; about half of all SYNGAP1 patients have an autism diagnosis. 

Ron Mittelstaedt and his wife, Darin, who live in El Dorado Hills, run the foundation. He’s the executive chairman of Waste Connections, a solid waste and recycling company with 20,000 employees in North America, and his family operates Toogood Estate Winery in Somerset. The Mittelstaedts have donated millions of dollars to organizations that help children over the past 15 years.

This time, it’s personal.

About three and-a-half years ago, Ron Mittelstaedt’s best friend died, leaving behind three sons and their families. “I’ve become sort of a surrogate dad, and now a surrogate grandfather,” explained Mittelstaedt. One of those “grandsons” was diagnosed with a SYNGAP1 mutation a year and-a-half ago. With the family’s support, Mittelstaedt is providing meaningful funding to the MIND Institute to advance research about the syndrome.

“The reality is, like many rare conditions, there aren’t a lot of great options. So, we’re trying to find potentially life-changing treatment that hopefully may impact the lives of people with SYNGAP1,” he said.

Mittelstaedt was previously on the MIND Institute’s inaugural National Council of Visitors (then called the MIND Institute Advisory Council), and funded a successful research project that developed a blood test for Tourette syndrome.


A staff member in the Silverman lab conducts behavioral neuroscience research.

“We are grateful to the Mittelstaedts for their generosity,” said MIND Institute Director Leonard Abbeduto. “As a collaborative hub for preclinical and clinical research on neurodevelopmental disability, the MIND Institute is uniquely suited to build on past successes and tackle the complexities of SYNGAP1 to provide help for families.”

The funding also supports UC Davis' $2 billion fundraising campaign, Expect Greater: From UC Davis, For the World, the largest philanthropic endeavor in university history. Together, donors and UC Davis are advancing work to prepare future leaders, sustain healthier communities, and bring innovative solutions to today's most urgent challenges.

What is SYNGAP1?

SYNGAP1-related non-syndromic intellectual disability is a rare neurodevelopmental condition caused by a variation in one gene. The gene, SYNGAP1, contains instructions for making a protein (SynGAP). This protein is located at the junctions between nerve cells, called synapses, and helps regulate changes important for memory and learning. The protein also helps regulate communication between neurons.

When the variation is present, the SYNGAP1 protein in cells is reduced which causes an increase in the excitability in the synapses. This makes it difficult for neurons to communicate and increases the likelihood of seizure events. This can lead to a variety of symptoms:


Jill Silverman

  • Developmental delay
  • Intellectual disability
  • Poor muscle tone, including trouble with balance and walking
  • Epilepsy
  • Sensory processing challenges
  • Autism
  • Sleep and behavior challenges.

SYNGAP1 syndrome affects 1-4 out of 10,000 people. The first patient was identified in 2009.

Groundbreaking research

The MIND Institute’s interventional genetics team includes faculty who specialize in multiple research areas.

"We’re trying to find potentially life-changing treatment that hopefully may impact the lives of people with SYNGAP1"

— Ron Mittelstaedt

“Each of us is a world expert in our particular discipline, so bringing us all together means the chances of success are much more likely,” said Jill Silverman, associate professor in the Department of Psychiatry and Behavioral Sciences and an internationally recognized expert in the use of rodent models for therapeutic development. Silverman’s Lab is known for its expertise in behavioral neuroscience research.

In addition to Silverman, the SYNGAP1 team includes three other MIND Institute faculty members:

“The sum of the group is going to be much greater than anything we could have done alone,” said Fink, whose lab focuses on therapeutic development for neurodevelopmental conditions and neurodegenerative diseases. “The fact that the foundation has funded us as a team, across multiple centers and programs is really unique. This funding brings us all together for an important project.”


Kyle Fink in his lab, which focuses on therapeutic development for neurodevelopmental conditions and neurodegenerative diseases.

The researchers will work on parallel tracks, each contributing a piece of the puzzle.

Silverman will conduct specialized behavioral tests on mouse models of SYNGAP1, using tools with corresponding metrics in humans, such as EEGs (a type of brain scan) to determine clinically relevant outcomes.

Nord and Fink will create a new mouse model that contains the mutated human SYNGAP1 gene, while Segal and Fink will create new molecular therapies to counter that mutated gene. They’ll also figure out how to deliver those therapies to the brain.

“We’re not just trying to treat the symptoms of the disease with a drug,” explained Segal, whose lab specializes in molecular analysis. “We are trying to change the underlying genetic condition, and our particular approach is to do that in a way that does not change the DNA sequence. We use tools to change the gene expression instead, which we think will make safer therapies. It’s really a state-of-the-art approach. It’s molecular therapy.”


David Segal working in his lab, which specializes in molecular analysis.

The collaborative approach, often called “team science,” coupled with the RDM Positive Impact Foundation’s support, allows for an ambitious, fast-tracked research program. The $1.25 million frees the researchers from the need to apply for multiple federal grants and enables them to focus immediately on SYNGAP1.

The team excels in what’s often called “bench to bedside” research, translating results from the lab directly into therapies for patients.

“We see these patients, we meet with them, we’re on Zoom calls with them and I want to find something that works for them. I want to change their lives. That’s what I’m driven by,” Silverman said.

Building on previous success

Silverman, Fink and Segal have had previous success with their work on another rare genetic condition, Angelman syndrome, which causes developmental delay, speech and balance challenges and intellectual disability.

"We’re not just trying to treat the symptoms of the disease with a drug. We are trying to change the underlying genetic condition, and our particular approach is to do that in a way that does not change the DNA sequence. We use tools to change the gene expression instead, which we think will make safer therapies. It’s really a state-of-the-art approach. It’s molecular therapy."

— David Segal

Their labs helped to create and characterize the first rat model of Angelman syndrome last year. The Segal lab also created a protein therapeutic that could increase the level of the affected gene in mouse models of Angelman syndrome, a major discovery.

All three labs are still working on a wide range of therapeutics for Angelman, including molecular therapies delivered with viruses or stem cells and novel small molecule compounds.

Ron Mittelstaedt is hoping for another success story, this time with SYNGAP1, but he’s also realistic about the research process.

“We are all very aware that going down this path doesn’t guarantee anything except the ability to get up to bat, and we could get a hit or strike out. But doing nothing guarantees you don’t get a hit, so it’s important for us to take action, and we’re hopeful we’ll hit a home run.”

Related Stories

UC Davis researchers get $3 million FAST grant to find treatment for Angelman syndrome

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202106_mind-institute-brain-bank-focused-on-autism-diversity-education-and-research Mon, 07 Jun 2021 07:00:00 GMT MIND Institute brain bank focused on autism, diversity, education and research <p>The new CENE Brain Bank, supported by the MIND Institute, aims to increase the diversity of brain tissue available for research about autism and other neurodevelopmental conditions. The project includes collection sites in Latin American countries.</p> A new project of the UC Davis MIND Institute aims to increase the diversity and availability of post-mortem brain tissue for the study of neurodevelopmental conditions like autism, fragile X syndrome, and Down syndrome.

Veronica Martínez-Cerdeño, professor of pathology and laboratory medicine and MIND Institute faculty member, is leading the effort. It includes the establishment of brain banks, or nodes, in several Latin American countries for the collection and research of brain tissue. The project is called the Hispano-American Brain Bank of Neurodevelopmental Disorders (Banco Hispanoamericano de CErebros de trastornos del NEurodesarrollo), or CENE.

So far, there are nodes in California, Mexico, Puerto Rico, Colombia, the Dominican Republic and the University of Pittsburg, Pa. A pre-existing bank at the MIND Institute, established by world-renowned fragile X researcher Randi Hagerman, is serving as a California node. There are additional nodes planned in Bolivia and Chile.

The nodes are housed in hospitals, universities and existing brain banks. Each is staffed by clinicians and researchers who specialize in neurodevelopmental conditions.

The importance of human tissue research

CENE is a passion project for Martínez-Cerdeño, who is a strong proponent of human tissue research to better understand autism.

"California has a large population of Hispanic people and a significant number of other people of color. We want our brain bank to represent the general population."

— Veronica Martínez-Cerdeño

“There are not a lot of labs doing this kind of research because there aren’t enough brains to study,” she said. “There is a lot of research about diagnostics and treatment, and research in animal models, but we are lacking research in human tissue. If you want to know why a person has certain behaviors and what the anatomy conveys, there is no other way than to look at the brain.”

Post-mortem brain tissue research has led to advancements in autism research, including a better understanding of the role that both genes and a person’s environment can play in the condition, brain structure changes over time, and better animal models.

Martínez-Cerdeño notes that microscopic analysis of brain tissue – both of people with neurodevelopmental conditions and without – is critical to the field.

“The cerebral cortex has millions of cells, millions of connections, synapses and fibers and you can only see that in a microscope. In autism, this is what’s going on – we have an alteration of synapses, alteration of cell type, alternation of neurotransmitters. To understand that, we must look at the brain.”

Diversity in research

In addition to a shortage, there is a lack of diversity in the brain tissue available to researchers.

“Nearly all of the brain tissue collected in brain banks is from white people,” Martínez-Cerdeño said. “California has a large population of Hispanic people and a significant number of other people of color. We want our brain bank to represent the general population.”


There is a lack of diversity in the brain tissue available for research into neurodevelopmental conditions like autism

She noted that the location of nodes in Latin America, combined with worldwide tissue distribution, should help to improve the representation of individuals with Hispanic heritage in neurodevelopmental disability brain tissue research.  

Another of CENE’s goals is to encourage new researchers to enter the field. There are plans to recruit trainees that travel between nodes at the undergraduate, graduate and postdoctoral levels, as well as early-career professionals.

CENE also has an advisory council composed of internationally recognized leaders in the field.

The MIND Institute is also part of Autism BrainNet, a network of institutions that collect, store and distribute brain tissue for research that is independent of the CENE project.

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202106_el-banco-de-cerebros-en-el-instituto-mind-se-concentra-en-autismo-diversidad-educacin-e-investigacin Mon, 07 Jun 2021 07:00:00 GMT El banco de cerebros en el Instituto MIND se concentra en autismo, diversidad, educación e investigación <p>El nuevo banco de cerebros CENE, apoyado por el Instituto MIND, tiene como objetivo aumentar la diversidad del tejido cerebral disponible para la investigaci&oacute;n sobre el autismo y otros trastornos del neurodesarrollo. El proyecto incluye sitios de recolecci&oacute;n en pa&iacute;ses de Am&eacute;rica Latina.</p> Se ha creado un nuevo proyecto del Instituto MIND de UC Davis con el objetivo de a aumentar la diversidad y disponibilidad de tejidos cerebrales post-mortem para el estudio de trastornos del neurodesarrollo como el autismo, el síndrome de X frágil y el síndrome de Down.

El esfuerzo es liderado por Veronica Martínez-Cerdeño, profesora de patología y medicina de laboratorio, e investigadora principal en el Instituto MIND. El proyecto incluye el establecimiento de bancos de cerebros, o nodos, en varios países latinoamericanos para la recolección e investigación de tejidos cerebrales. El proyecto se denomina Banco Hispanoamericano de CErebros de Trastornos del NEurodesarrollo, o CENE.

Hasta ahora, hay nodos en California, México, Puerto Rico, Colombia, la República Dominicana y la Universidad de Pittsburg, PA. Un banco preexistente en el Instituto MIND, establecido por la reconocida investigadora del síndrome de X frágil Randi Hagerman, funciona como nodo en California. Hay otros nodos planeados en Bolivia y Chile.

Los nodos funcionan en hospitales, universidades y bancos de cerebros ya existentes. Cada uno tiene un personal de médicos e investigadores que se especializan en trastornos del neurodesarrollo.

La importancia de la investigación del tejido humano

El proyecto CENE es una pasión para Martínez-Cerdeño, que es una fuerte proponente de la investigación en tejido humano para entender mejor el autismo.

"California tiene una población grande de hispanos y un número significativo de otras comunidades étnicas. Queremos que nuestro banco de cerebros represente a toda la población."

— Veronica Martínez-Cerdeño

“No hay muchos laboratorios haciendo este tipo de investigación porque no hay suficientes cerebros para estudiar”, dijo. “Hay mucha investigación sobre diagnóstico y tratamiento, e investigación en modelos animales, pero nos falta investigación en tejido humano. Si queremos saber por qué una persona tiene ciertas conductas y como la anatomía del cerebro produce estas conductas, hay que estudiar el cerebro”.

La investigación de tejidos cerebrales post-mortem ha llevado a avances en la investigación del autismo, incluyendo un mejor entendimiento del papel que juegan los genes, los factores ambientales y los cambios temporales de la estructura cerebral del cerebro con autismo. Los estudios post-mortem también nos han permitido crear mejores modelos animales para el estudio de dichos trastorntos.  

Martínez-Cerdeño advierte que el análisis microscópico del tejido cerebral – de personas con trastornos del neurodesarrollo y personas sin ellos – es crítico para este campo de investigación.

“La corteza cerebral tiene millones de células, fibras y conexiones”. En el autismo hay una alteración de estas estructuras. Para entender estas alteraciones debemos estudiar al cerebro”.

Diversidad en la investigación

Además de la escasez de cerebros para el estudio, también hay una falta de diversidad en el tejido cerebral disponible para los investigadores.

“Casi todo el tejido cerebral obtenido en los bancos de cerebros es de personas blancas”, dijo Martínez-Cerdeño. “California tiene una población grande de hispanos y un número significativo de otras comunidades étnicas. Queremos que nuestro banco de cerebros represente a toda la población”.


Hay una falta de diversidad de tejido cerebral disponible para la investigación de trastornos del neurodesarrollo como el autismo.

Martínez-Cerdeño agregó que la ubicación de nodos en América Latina, en combinación con la distribución mundial de tejidos, debería ayudar a mejorar la representación de individuos de origen hispano en la investigación de los trastornos del neurodesarrollo en tejido cerebral.

Otra de las metas de CENE es alentar a nuevos investigadores para que ingresen a este campo. Hay planes para contratar becarios que viajen entre distintos nodos, incluyendo estudiantes, graduados e individuos con nivel posdoctoral, así como también nuevos profesionales en el tema.

CENE también tiene un consejo asesor compuesto de líderes reconocidos internacionalmente en este campo.

El Instituto MIND también es parte de Autism BrainNet, una red de instituciones independiente del proyecto CENE que recolecta, almacena y distribuye tejidos cerebrales para la investigación.

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202106_rapid-whole-genome-sequencing-leads-to-better-outcomes-for-babies-lower-medical-costs Fri, 04 Jun 2021 07:00:00 GMT Rapid whole genome sequencing leads to better outcomes for babies, lower medical costs <p>A study published today outlined the success of Project Baby Bear, a real-world quality improvement program designed to test the clinical and economic value of using rapid Whole Genome Sequencing to diagnose and guide treatment for infants with unexplained rare disease.</p> The evidence is in: A state-funded Rapid Precision Medicine program led by Rady Children’s Hospital-San Diego yielded life-changing outcomes for critically ill infants at five California hospitals while significantly reducing health care costs. UC Davis Children’s Hospital and the UC Davis Mind Institute were key participants in the research.

A study published today in the American Journal of Human Genetics outlined the success of Project Baby Bear, a real-world quality improvement program designed to test the clinical and economic value of using rapid Whole Genome Sequencing (rWGS ®) to diagnose and guide treatment for infants with unexplained rare disease.

Employing the most comprehensive diagnostic testing available, Rady Children’s Institute for Genomic Medicine used rWGS to analyze the genetic code of 184 infants in intensive care who were covered by Medi-Cal. The results provided doctors and families with vital information that empowered them to make life-altering medical decisions resulting in shorter hospital stays, targeted personalized care and fewer costly, invasive procedures.

“It’s very rare to be able to use the most advanced medical technology to both improve a child’s life and save money, yet Project Baby Bear proved it’s possible,” said David Dimmock, senior medical director of the institute. “We identified 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, in some cases avoiding irreversible health consequences.”

Rapid WGS proved to be a valuable tool in clinical decision-making. Among the infants sequenced, rare genetic diseases that explained the baby’s admission to intensive care were diagnosed in 74 babies, or 40%. 

Guided by the vital information provided by rWGS, clinicians were able to provide precision medicine that changed care for 58 babies, or 32%. Conclusive diagnosis allowed doctors to make treatment plans with more confidence. Results from genome sequencing also empowered parents to join physicians in making informed care decisions.

“The study highlights the importance of using state-of-the-art rapid genome sequencing technology in our most vulnerable population – neonates and acutely sick infants from historically underserved communities – to provide precision medical care based on accurate diagnosis,” said Suma Shankar, director of the UC Davis Precision Genomics Clinic and co-lead of the UC Davis site for Project Baby Bear.

“Many families felt relief in knowing and understanding the cause for their baby’s illness and the ability to receive cutting edge therapies based on receiving rare specific diagnosis early on in the course where timing is crucial to prevent long term disability,” said Shankar, who is also a UC Davis MIND Institute faculty member.

In addition to changes in treatment, rWGS resulted in avoidance of other costly procedures such as tracheostomies or gastric tube insertions, eliminated the need for further testing and led to fewer days in the hospital.

“These findings show that rWGS should be considered early for infants admitted to intensive care when the cause of the child’s condition is unknown.” said Patrick Frias, president and CEO of Rady Children’s Hospital. “Project Baby Bear has demonstrated that it’s feasible and effective to use rWGS to inform precision medicine for the most vulnerable infants; it achieves both improved health outcomes and cost savings.”

Project Baby Bear was funded by the State of California as a $2 million Medi-Cal pilot. Participation was limited to acutely ill babies enrolled in Medi-Cal who were admitted to intensive care between November 2018 and May 2020.

Patient blood samples were sent to RCIGM for sequencing and interpretation from regional neonatal and pediatric intensive care units at the following participating hospitals: UC San Francisco Benioff Children’s Hospital Oakland; UC Davis Children’s Hospital (Sacramento); Valley Children’s Hospital (Madera); CHOC Hospital (Orange County) and Rady Children’s Hospital–San Diego.

Encouraged by the early success of Project Baby Bear, the State of Florida and State of Michigan have since initiated their own publicly funded rWGS demonstration projects.

The California Legislature is currently considering adopting AB114, the Rare Disease Sequencing for Critically Ill Infants Act, introduced by Assemblymember Brian Maienschein (D-77). Also pending is a federal bill, Ending the Diagnostic Odyssey Act, introduced by San Diego Congressman Scott Peters (D-52).

The study referenced in this release is: "Project Baby Bear: Rapid Precision Care Incorporating rWGSin 5 California Children’s Hospitals Demonstrates Improved Clinical Outcomes and Reduced Costs of Care" (AJHG-D-21-00121R1) The American Journal of Human Genetics. DOI: 10.1016/j.ajhg.2021.05.008. 

Related links

Project Baby Bear shows genomic sequencing for infants in intensive care yields life-changing benefits and medical cost savings

UC Davis Children's Hospital joins program to test critically ill newborns

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202106_unleashed-how-a-doggie-day-care-was-the-perfect-fit-for-employee-and-employer--video Wed, 02 Jun 2021 07:00:00 GMT Unleashed: how a doggie day care was the perfect fit for employee and employer (video) <p>For one woman with autism, a job at a local doggie daycare has provided purpose. The opportunity resulted from an innovative UC Davis MIND Institute program, which connects employers and agencies eager to support workers with developmental disabilities.</p>
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This is a story about hope, opportunity and a chihuahua named Bruiser. It takes place at Cha Cha’s Doggie Daycare in East Sacramento, where 34-year-old Ashley Robertson has been working since October of 2020.

“I’m usually more of a cat person,” she said, but then quickly added, “but I like dogs just as much.”


Ashley Robertson with Bruiser, her favorite dog at Cha Cha’s Doggie Daycare

Robertson has autism, and her job at Cha Cha’s is supported by Progressive Employment Concepts, which assists businesses that hire people with developmental disabilities. Progressive is a partner of the Northern California Business Advisory Council, part of the Center of Excellence in Developmental Disabilities at the UC Davis MIND Institute. The collaboration introduces business to qualified applicants who have disabilities, which increases diversity, equity and inclusion at regional workplaces. Job options for people with developmental disabilities are very limited. So, the Business Advisory Council acts as a bridge between employers and the agencies that can provide support to businesses through the onboarding and training process.

Cha Cha’s owner, Desalene Jones, was moved to contact the MIND Institute when she noticed that an after-school center next door, where kids with autism used to gather, closed due to the pandemic.

“I wanted to know how I could help; how I could be the change,” she said. The Business Advisory Council discussed her vision and connected her with Progressive Employment Concepts, and they introduced Robertson as a possible hire.

But working at a doggie daycare isn’t for everyone, Jones warned. “The dogs are loose here and running around and it’s different from a lot of typical kennels, when you have 30 dogs jumping on you. Ashley walked through and was interested, and it seemed like a good match.”

And it has been. Robertson now works 16 hours a week.

A great match

On a recent workday, Robertson described her duties at Cha Cha’s, while nuzzling her favorite dog at the daycare.


Cha Cha’s owner Desalene Jones (left) and Ashley Robertson feed the dogs a snack

“I like this little chihuahua named Bruiser because he’s really sweet,” she explained, in between cuddles. “I like to play with the dogs and I also like to do nap time with them. They’ll lay down in whatever space they can find, and I usually sit with them. I also do leash work, feed the dogs their lunches and I also often clean up their messes,” Robertson said.

Of course, that comes with the territory at a place whose website proudly proclaims #MustLovePoop.

“If you want to cuddle with a dog, at some point you’re going to wash a wall. Even if you’re not in this industry, if you want to cuddle with a dog, you’re picking up some poop, so they go hand in hand,” laughed Jones. 

As part of the arrangement with Progressive Employment Concepts, Robertson makes a regular wage and has a job coach, Marlene Mangabat, who joins her at work part of the time. Cha Cha’s also receives financial assistance while Ashley is being trained. The goal is to gradually decrease Mangabat’s role until she’s not needed.

“One of the biggest rewards of being a job coach is to see the changes,” said Mangabat. “With Ashely, we were worried about her learning the dogs’ names, but she learned them quickly and then was able to give them commands, so just to see her improvement, it’s like --‘wow!' -- you can see the confidence growing.”

Long-term relationships

BAC logoInterested in hiring someone through the program?

• Contact the Northern California Business Advisory Council
• They’ll set you up with a supported employment agency that’s part of the team
• They’ll assist with locating qualified applicants that you can interview
• At no cost, the agency will assist with pre-screening, training and ongoing, long-term support and retention of the employee, including a job coach
• Help expanding diversity, equity and inclusion programs at your business.
• Get more information about the Business Advisory Council here

That growth is one of the benefits of the program, said Steve Ruder, community health program supervisor with the Business Advisory Council. He noted that an employee’s development opportunities often lead to a successful, long-term relationship.

“Employers tell us all the time that these hires are incredibly competent, that they are loyal and that they are oftentimes the face of the business,” Ruder said. “Some have been with their company for a decade or longer.”

In 2016, the Business Advisory Council reviewed workers supported by two partner agencies and found that of the 91 employees, 22 had worked for the same company for a decade or longer, and eight had worked for the same employer for at least 20 years. “Many of these companies are in the service industry,” explained Ruder. “The fact that a third of these employees have been at the same company for ten or more years is truly astounding.”

Jones noted that Robertson is still in learning mode, and so are her other employees. “She’s still developing her skills and is doing well with specific tasks, such as cleaning. I think it stretches her a bit when little things happen, like a dog attacking the mop, but she’s doing really well,” she said. “As a business owner it’s helpful to have someone that enjoys doing those tasks.”

Jones said a recent training session with her whole team and Mangabat via Zoom was very helpful, too. “I didn’t realize what a benefit that would be. It improved communication between Ashley and my other employees, but much of what we all learned could be used outside of work, too, in terms of communication and universally helpful concepts,” she said.


Ashley Robertson in the outside play area with the dogs at Cha Cha’s Doggie Daycare

In fact, it’s been so successful that Jones has now hired a second employee with developmental disabilities through Southside Unlimited, another supported employment agency that works with the Business Advisory Council. Her advice to other employers considering the idea is, “Do it!”

As for Robertson, she says the job at Cha Cha’s has helped her to realize how much she enjoys working with animals and plans to continue doing so. “The job is very rewarding, and I see it as a blessing – and a success,” she said.  

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202105_air-quality-linked-to-increased-risk-of-alzheimers Wed, 19 May 2021 07:00:00 GMT Air quality linked to increased risk of Alzheimer's <p>A study led by UC Davis toxicologist Pamela Lein found a link between traffic-related air pollution and an increased risk for age-related dementia, including Alzheimer's disease. More than 5 million Americans currently live with Alzheimer's disease.</p> Researchers at the University of California, Davis, have found a link between traffic-related air pollution and an increased risk for age-related dementia, including Alzheimer’s disease. Their study, based on rodent models, corroborates previous epidemiological evidence showing this association.

Alzheimer’s disease is the most common cause of age-related dementia and the sixth leading cause of death in the United States. More than 5 million Americans currently live with Alzheimer’s disease — a number that is expected to triple by 2050 as the population ages. Health care costs for those patients are predicted to grow from $305 billion in 2020 to $1.1 trillion by 2050.

UC Davis toxicologist Pamela Lein, senior author of the study recently published in Environmental Health Perspectives, said their findings underscore the urgent need to identify factors that contribute to the onset and progression of Alzheimer’s to develop effective preventive measures for reducing the individual and societal burden of this disease.

Lein worked with UC Davis atmospheric scientist Anthony Wexler and first author Kelley Patten, while she was a doctoral student in the UC Davis graduate group for pharmacology and toxicology, to develop a novel approach to study the impacts of traffic-related air pollution in real time. Researchers set up a rodent vivarium near a traffic tunnel in Northern California so they could mimic, as closely as possible, what humans might experience from traffic-related air pollution.

“This approach was a creative way to get at the question of what impacts air pollution has on the brain in the absence of confounding factors such as socioeconomic influences, diet, etc.,” Lein said. “It’s important to know if living close to these roadways poses a significant risk to the human brain as it ages.”

Exposure outcomes on the aging brain

The researchers exposed male and female rats for up to 14 months to filtered air or polluted air drawn from the tunnel and delivered it to animals unchanged in real time. The subjects were divided into two groups: wild type rats and those that express Alzheimer’s disease risk genes that are relevant to humans.

"It’s important to know if living close to these roadways poses a significant risk to the human brain as it ages.”

— Pamela Lein

Testing was conducted in 3-, 6-, 10- and 15-month-old animals using hyperspectral imaging, behavioral testing and neuropathologic measures to quantify the expression of Alzheimer’s disease characteristics.

“We saw that traffic-related air pollution accelerated Alzheimer’s disease characteristics not only in the animals who express the risk gene (which we anticipated) but also in the wild type rats,” Lein said. “We didn’t anticipate that. The big, exciting discovery is that traffic-related air pollution is a risk factor for late-onset Alzheimer’s disease. This is important because this pollution is everywhere and could explain the increased number of people impacted by Alzheimer’s disease across the world.”

What remains unclear is which component of that pollution is predominately responsible for the effects on the brain. There are gases, particulate matter, road dust, tire wear, vibration and noise involved in traffic-related air pollution.

“The next set of studies is to try and tease apart specific components of traffic-related air pollution that drive these Alzheimer’s disease traits,” Lein said. “Or is it the collective mix that causes the damage?”

Fine particles (PM 2.5) in the polluted air at the study site were below federal regulatory limits, but ultrafine particles, which are not regulated, were detected in the brains of exposed animals.  

“The Environmental Protection Agency only regulates down to the PM 2.5 level, but the bulk of this traffic-related air pollution is ultrafine particulate matter,” Lein said. “These studies provide incentive to re-evaluate the current regulatory standards and suggest that current ones are not protective of the aging brain.”

The study shows traffic-related air pollution can deliver a double whammy, decreasing the time of onset of Alzheimer’s disease characteristics and accelerating disease progression. While personal factors can change an individual’s risk for Alzheimer’s disease (exercise, smoking, diet), people are often poor about sticking to a plan to decrease their risk factors.

“There’s a lot of data that shows if you can regulate risk factors through policy at a population level, you have a more significant public health impact than if you try to regulate them at the individual level,” Lein said. “If we could make some progress in identifying which component in traffic-related air pollution is causing these effects, then scientists can approach legislators to develop scientifically based regulations. Even if we can delay onset of Alzheimer’s disease by five years, we could potentially save our health care system an enormous amount of money.”

This study is one of four published papers to come out of the research site to date. A prior study, published in Translational Psychiatry focused on the developing brain and found a link between traffic-related air pollution and an increased risk for changes in brain development relevant to neurodevelopmental disorders such as autism.

Other study co-authors include: Kelley T. Patten and Anthony Valenzuela, UC Davis School of Veterinary Medicine; Anthony S. Wexler, Christopher Wallis, and Keith J. Bein, UC Davis Air Quality Research Center; Elizabeth Berg, UC Davis School of Medicine; and Jill Silverman, UC Davis MIND Institute and UC Davis School of Medicine.

The study was supported by the National Institutes of Health.

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202105_new-college-program-for-students-with-intellectual-disabilities-accepting-applications-video Mon, 17 May 2021 07:00:00 GMT New college program for students with intellectual disabilities accepting applications <p>Applications are now being accepted for Redwood SEED Scholars, a brand-new, four-year college program for students with intellectual disabilities. The inclusive program includes living on campus, attending traditional classes and work opportunities. Applications are due June 4.</p> Applications are now being accepted for a groundbreaking new college program serving students with intellectual disabilities at UC Davis. This fall, the first class of 12 Redwood SEED (Supported Education to Elevate Diversity) Scholars will join their fellow freshmen as part of the inclusive, four-year program.

To qualify, students must have a diagnosed intellectual disability and be 18-23 years old. They may have neurodevelopmental conditions such as autism, fragile X syndrome or Down syndrome, or a traumatic brain injury. The MIND Institute and the UC Davis Office of Diversity, Equity and Inclusion are jointly running the new program. It is funded in part by a five-year, $2.1 million grant from the U.S. Department of Education. Students will also pay tuition and room and board.

“This is monumental,” said Beth Foraker, co-director of Redwood SEED Scholars and an instructor in the UC Davis School of Education. “This is an opportunity for students with intellectual disability to experience the social and educational growth that a fully integrated college experience can provide.”

Foraker, whose 21-year-old son Patrick has Down syndrome, has envisioned a program like Redwood SEED Scholars for years. “It’s the most exciting thing I’ve ever been a part of.”

Groundbreaking college program for adults with intellectual disabilities


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Students in the program will have the opportunity to live on campus, take college classes, engage in social activities and organizations, and pursue an internship or job. The curriculum will combine traditional UC Davis courses with custom courses focused on relevant issues such as independent living. Although the students won’t earn a bachelor’s degree, they’ll leave with a meaningful credential after four years.

A support system will be built into the program, including undergraduate students who will serve as peer mentors, helping with academics, social activities and health and wellness. Foraker is currently training next year’s mentors.

“These undergraduates are incredibly engaged and realize that the relationships they’ll develop with these students will be symbiotic, and will benefit all involved,” Foraker explained. 

A critical need

Most adults with intellectual disability are unemployed and many are living in poverty. Post-secondary options are limited, and four-year college programs are especially rare. The Redwood SEED Scholars program will be the first of its kind in California.

“We hope this is the seed that grows to include similar programs at many other California colleges and universities,” said Leonard Abbeduto, MIND Institute director and Redwood SEED Scholars co-director. “This is about civil rights. It’s about diversity, equity and inclusion. These students deserve an opportunity to gain the skills to engage in meaningful employment, and this program will provide that.”

“This is an opportunity for students with intellectual disability to experience the social and educational growth that a fully integrated college experience can provide.”

— Beth Foraker
Redwood SEED Scholars co-director

How to apply

Applications are due June 4. The selection process includes an online application and an interview. Students will need to provide their most recent individualized education program (IEP), as well as other educational documents, and ask two people to recommend them for the program.

The application team hopes to notify the successful candidates in July. They’ll also provide feedback for applicants who are not successful on how to strengthen their submission if they want to re-apply in the future.

For specific questions about the application process, please email HS-RedwoodSeed@ucdavis.edu or call 916-703-0269.

Why Redwood SEED?


Redwood SEED Scholars co-director Beth Foraker (Karin Higgins/UC Davis)

The program gets its name from the T. Elliot Weier Redwood Grove on the Davis campus. “Redwoods don’t grow in the Central Valley,” said Foraker. “Yet this grove flourishes thanks to careful tending, a habitat that allows them to thrive and people willing to make the impossible happen. Redwood SEED Scholars will take their cue from these on-campus giants.”

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202105_uc-davis-mind-institute-to-host-inaugural-stem-cell-gene-therapy-conference Tue, 11 May 2021 07:00:00 GMT UC Davis MIND Institute to host inaugural stem cell, gene therapy conference <p>The UC Davis MIND Institute is now accepting abstracts for its first-ever Stem Cell and Gene Therapy for Neurodevelopmental Disorders Conference. The September event will feature both in-person and virtual options and will focus on the development of treatments for genetic disorders.</p> This fall, the UC Davis MIND Institute will host a brand-new conference focused on the development of effective genetic and stem cell treatments for children with neurodevelopmental conditions such as autism, fragile X syndrome, Rett syndrome, Dravet syndrome, Angelman syndrome and others.

Abstracts are currently being accepted for the inaugural Stem Cell and Gene Therapy for Neurodevelopmental Disorders Conference and are due June 1. The event will take place Sept. 24-25, and current plans include options for either in-person or virtual attendance. Limited abstract awards will be offered to graduate students and postdoctoral fellows.

“This is an exciting, collaborative opportunity to learn from experts who are doing cutting-edge research in these areas,” said MIND Institute Medical Director Randi Hagerman, a world-renowned fragile X syndrome expert who is on the conference planning committee.

“In bringing novel cell and gene therapy trials from the bench to the bedside and into clinical practice, scientists and medical experts must work together with regulatory and manufacturing groups in large teams. We want to bring everyone together to build momentum,” Hagerman said.

The planning committee also includes Jan Nolta, director of the Stem Cell Program at UC Davis School of Medicine, who also directs the Institute for Regenerative Cures, Kyle Fink, assistant professor in the Department of Neurology and David Segal, professor in the Department of Biochemistry and Molecular Medicine, the Department of Pharmacology, and the Genome Center, where he is the associate director of genomics.

“This is an exciting, collaborative opportunity to learn from experts who are doing cutting-edge research in these areas,”

— Randi Hagerman

This event, sponsored in part by Senses Cultural, will be strongly rooted in evidence-based science and will feature several keynote speakers:

  • Kristen Brennand, associate professor, Department of Genetics and Genomic Sciences, Nash Family Department of Neuroscience, Icahn School of Medicine at Mount Sinai. Brennand will present a talk entitled “Using Stem Cells to Explore the Genetics Underlying Neuropsychiatric Disease.” 
  • David R. Hampson, professor, University of Toronto, Department of Pharmaceutical Sciences, Leslie Dan Faculty of Pharmacy, Department of Pharmacology and Toxicology. Hampson will present a talk entitled “Developing Adeno-associated Viruses for Treating Fragile X Syndrome and Dravet Syndrome.” 
  • Alysson R. Muotri, professor, director of the Stem Cell Program, Institute for Genomic Medicine, University of San Diego. Muotri will present a talk entitled, “Development of Oscillatory Waves on Cortical Organoids for Developmental and Evolutionary Studies.” 
  • Matthew Porteus, physician and professor, Stanford University. Porteus will present a talk entitled “Engineering Stem Cells by Genome Editing to Treat Neurodegenerative Diseases.”

Abstracts are due June 1. Submissions will be considered either for a presentation or a poster in the following areas:

  • Molecular and gene editing
  • Animal models
  • Human studies
  • Clinical trials and future studies

Submit your abstract.

Conference registration will open in June.

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202105_mind-institute-honored-by-chancellor-for-diversity-equity-and-inclusion-efforts-video Tue, 04 May 2021 07:00:00 GMT MIND Institute honored by Chancellor for diversity, equity and inclusion efforts (video) <p>The UC Davis MIND Institute received a department-wide award from the UC Davis Chancellor&rsquo;s Office for its significant efforts to increase diversity, equity and inclusion. Recent efforts include grants, healing circles and outreach to the medically underserved.&nbsp;&nbsp;</p>
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The UC Davis MIND Institute has been honored with a Chancellor’s Achievement Award for Diversity and Community. The honor is a result of extraordinary efforts by MIND Institute leadership, faculty, staff and trainees to expand diversity, equity and inclusion in all aspects of their work, research and patient care.

Renetta Garrison Tull, UC Davis vice chancellor of diversity, equity and inclusion (DEI), presented the award to a group representing the MIND Institute during a virtual ceremony last week.


The award was presented during a virtual ceremony April 28.

“We really appreciate this recognition,” said MIND Institute Director Leonard Abbeduto. “We’ve been committed to DEI work for a long time, but last year the violence against people of color really made us more reflective and energized and led us to expand our efforts.”

The MIND Institute has a history of commitment to diversity, equity and inclusion, including training programs such as RISE-UP, for undergraduates pursuing careers to serve historically underrepresented groups and who are mentored by faculty members.

It’s important for us to continue developing a diverse pipeline of future leaders in the disability field,” said Janice Enriquez, an associate clinical professor in developmental and behavioral pediatrics who chairs the MIND Institute’s newly created Diversity, Equity and Inclusion Committee. “Faculty mentor these talented students, have a presence in our community and strive to provide equitable care for individuals with neurodevelopmental disabilities.”

“We’ve established processes and mechanisms to keep DEI always at the forefront of what we do, and to recognize that it’s an ongoing process with no real endpoint.”

— Leonard Abbeduto
MIND Institute director

More recently, the MIND Institute has redoubled its efforts by supporting the Office of Equity, Diversity and Inclusion’s racial healing circles, organizing book clubs and training staff, as well as seeking deep reflection aimed at embedding diversity, equity and inclusion into its mission and structure. There is also a push for trainees at all levels to understand the social determinants of health, as well as a new partnership with the Transformative Justice in Education Center to address disability at the intersection of multiple cultural identities.

“All parts of the organization have gotten behind us – faculty, staff, trainees, our National Council of Visitors, which raises money for us - all have been energized and really motivated,” noted Abbeduto. “We’ve established processes and mechanisms to keep DEI always at the forefront of what we do, and to recognize that it’s an ongoing process with no real endpoint.”

Many MIND Institute faculty members have also commented on another, welcome benefit of the expanded efforts.

For the full list of this year's award recipients, see the Dateline feature.

“As we’ve engaged in DEI work, it’s really brought us together as a community,” said Abbeduto. We communicate more. We know each other better, and I think we have really pulled together and are more cohesive as an organization.”

Watch the full virtual awards presentation here. The MIND Institute section begins at about 41:00.

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202104_mind-institute-study-of-anxiety-in-children-with-autism-now-includes-online-treatment Tue, 20 Apr 2021 07:00:00 GMT MIND Institute study of anxiety in children with autism now includes online treatment <p>The UC Davis MIND Institute is now offering online treatment as part of its clinical trial known as the STAAR study. The trial will compare the effectiveness of the medication sertraline and cognitive behavioral therapy in treating anxiety in children with autism.</p> It’s now easier than ever to take part in a study that includes treatment for anxiety in children with autism spectrum disorder (ASD) at the UC Davis MIND Institute’s Autism Center of Excellence.

Parents can get customized therapy for their child from the Institute’s trained experts without leaving home. It’s part of a clinical trial called the Specifying and Treating Anxiety in Autism Research, or STAAR Study. And it has now expanded to offer online, telehealth study treatment appointments.

It compares the effectiveness of two treatments in children ages 8-14: the medication sertraline and individualized cognitive behavioral therapy (CBT). CBT is a well-researched, problem-solving, goal-directed therapy that examines and treats the relationships between thoughts and behaviors that are maintaining the anxious feelings.

“Most of it can be done from your couch,” said Marjorie Solomon, professor of psychiatry and behavioral sciences, who’s leading the trial. Solomon, a MIND Institute faculty member, said that when COVID-19 forced the cancellation of in-person research appointments, she and her team saw an opportunity.

“The online model is really exciting because it can be delivered so much more broadly to people who don’t live near the MIND Institute. We can serve people in Stockton, in Orange County and all over California. It really increases access,” she said. 

At least 50 percent of children with autism exhibit clinically significant anxiety symptoms.


Marjorie Solomon

“If your child has anxiety, that has a negative impact on so many aspects of their life: academically, socially, eventually career-wise. Anxiety has a really profound effect on well-being, and children that are anxious aren’t happy, so we really want to correct that,” said Solomon. 

Medication vs. therapy

Children enrolled in STAAR will be randomly assigned to either receive the medication sertraline (or a placebo) or CBT for 16 weeks. They’ll also be asked to get some lab work completed, which can be done at many locations throughout the state, as well as offered an optional MRI scan, which is done at the UC Davis Imaging Research Center in Sacramento. There is no cost to take part in the study.

Sertraline is an antidepressant, known as a selective serotonin reuptake inhibitor, and it may be used to help with symptoms of anxiety or autism. Some trial participants will take sertraline daily, and others will be given a placebo as a control.

Others will be assigned CBT. Participants and their parents will take part in 1.5-hour, interactive therapy sessions via a videoconferencing program on a tablet, phone or computer. The sessions will be administered by psychologists well-trained in CBT.

“Surprisingly, there aren’t really any big studies of either CBT or sertraline in this population, and we are the first single study to compare the two,” Solomon noted. 

“It’s state-of-the-art, comprehensive assessment and treatment, and now, you can do it from the safety of your own home – it’s a great opportunity.”

— Marjorie Solomon

When their treatment in the study ends, participants in the placebo group are offered the option of either CBT or sertraline.

“It’s state-of-the-art, comprehensive assessment and treatment, and now, you can do it from the safety of your own home – it’s a great opportunity,” said Solomon.

The MIND Institute is currently recruiting children with autism and anxiety, ages 8-14, to take part in the STAAR study. Information about STARR can be found here, or you can email hs-staarstudy@ucdavis.edu or call 916-703-0119.

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https://health.ucdavis.edu/health-news/mindinstitute/mind-institute-study-of-anxiety-in-children-with-autism-now-includes-online-treatment/2021/04
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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https://health.ucdavis.edu/health-news/mindinstitute/new-test-to-study-language-development-in-youth-with-down-syndrome/2021/04
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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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>
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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>
This video is best viewed in Chrome.

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>
This video contains pre-pandemic file footage. It is best viewed in Chrome or Firefox.

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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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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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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