Foundation encourages children to test children early for autism

From CBS St. Louis, Sept. 15, 2016

ST. LOUIS (KMOX) – Autism now affects one in every 68 children in this country, and it puts a real strain on families searching for answers and advice.

Jack Reis with the Thompson Foundation for Autism says one of the best things parents can do is get a diagnosis as soon as possible. Research has shown early intervention results in the best outcomes for kids.

“We don’t know the cause and we don’t know what the cure is,” Reis says. “But groups like the Thompson Center, are deeply involved in research and are hopeful that some day – of finding answers that parents and family members desperately need.”

Reis says parents can take their children to either the Thompson Center or Mercy Kids Autism Center for evaluation. He adds that it is very important to get a test done early.

Some of the top doctors and researchers in the field of autism will be part of a panel discussion Wednesday, September 21 at 5:30 p.m. The event will be located at the Doubletree in Chesterfield.

The event is free to attend.

For more information or or to submit questions to the panelists, contact Jack Reiss at (314) 550-2888 or jack.reis@thompsonfoundation.org.

Cognitive behavioral therapy could be key for children with autism getting enough sleep

From NewsWise, Aug. 30, 2016

COLUMBIA – Cognitive behavioral therapy is a short-term form of therapy that focuses on changing how a person thinks about and reacts to specific situations. Used by therapists for decades, it has been proven effective for treating a number of problems including insomnia. During the therapy, patients usually keep a sleep diary and work with a therapist to identify behaviors that are interfering with sleep. Experts from the University of Missouri believe that a family-based cognitive behavioral therapy may be the key for children with autism spectrum disorder (ASD) who have problems sleeping.

“Sleep problems for any child, but especially children with ASD, may cause issues in behavior and mood as well as impact learning abilities,” said Christina McCrae, professor of health psychology in the School of Health Professions and director of the Mizzou Sleep Research Lab. “In treating insomnia and other behavioral sleep issues, I have found that there is no substitute for cognitive behavioral therapy; yet, it is still unclear how to best use such therapy for children with ASD who struggle with communication.”

To better understand the benefits of a new, family-based cognitive behavioral therapy and how it may work to improve sleep in children with ASD, McCrae and Micah Mazurek, associate professor of health psychology, are conducting a sleep treatment study through the Research Core at the MU Thompson Center for Autism and Neurodevelopmental Disorders. Eligible participants must be between the ages of six and 12, been diagnosed with autism spectrum disorder and have experienced problems falling or staying asleep. For more information on the study please contact the Thompson Center Research Core at 573-884-6838 or MuckermanJu@health.missouri.edu.

McCrae suggest that if parents are noticing that their children with ASD are having problems—at home or in school—it may be helpful to check their sleeping habits. She also suggests that parents and health professionals should routinely screen for sleep problems as addressing them early may curb additional problems.

Albanian family’s journey with autism lands them at Thompson Center

COLUMBIA, Mo. (Aug. 2, 2016)–Just a few weeks ago, Amelia Klleci celebrated her eighth birthday here in Columbia, far from her home in Tirana, Albania, a Balkan nation of about 3 million people. Her family’s journey has been a long one to this day, across oceans as well as years of struggle as her parents, Xhevi and Shkëlqim, have managed Amelia’s treatment for autism.

Their journey began when Xhevi first noticed developmental changes in Amelia around her first birthday. The few words, the imitating and the social cues she had learned as an infant began to disappear. Xhevi would find her sitting in corners of the house, not responding to her name.

When Xhevi brought her to a specialist in the capital, Tirana, from their home in Gjirokaster when she was about 15 months old, he confirmed that Amelia had autism. Amelia would start receiving services in the capital within 5 months, including occupational therapy, behavioral therapy and, later, speech therapy.

Xhevi worked tirelessly to find services for Amelia.

“I was not quiet,” she said.

Living in the capital, Tirana, then became Amelia and Xhevi’s new reality, while Shkëlqim remained in Gjirokaster for work. The country’s health care system offered care for children with developmental delays, but only on an inpatient, rotating basis. Every two months, Amelia and Xhevi would spend two weeks in the capital’s state-run hospital, sharing a room with three other children and their parents.

Even in the inpatient setting, Xhevi said the medical staff was not equipped with the training to help her daughter. Many of the other children in the hospital had other developmental disorders, like Down syndrome or cerebral palsy, and few were trained in evidence-based, effective therapy techniques.

“Many of the staff were nurses and teachers serving as therapists,” Xhevi said. “They did not have the training to serve the needs of our child.”

Xhevi and Amelia lived with this schedule for the next 5 years, until Amelia’s sixth birthday, when specialist services for children end in Albania. She entered the public school system, which offers no special education services or supports for children with special needs. All children are placed in mainstream classrooms, such as Amelia’s kindergarten class of more than 30 children, regardless of learning needs and are taught by one teacher with no training in special education.

“She was not prepared to go to school,” Xhevi said. “If she had someone in the classroom to help her, she would do better. A law exists that these children should be integrated into mainstream classrooms without having extra support.”

Faced with this lack of services, Xhevi continued to speak up and reach out to find Amelia more help. While researching all she could about treatments and research, she would send hundreds of emails over the next year and a half to centers and specialists around the world.

“I wanted to have real therapies with real doctors,” Xhevi said.

One social worker told her about the Autism Treatment Network, or ATN, a group of 14 North American centers of excellence in autism care designated by Autism Speaks.

Xhevi contacted all 14 centers.

“They were very gentle with me, but they didn’t have enough funds to help us,” said Xhevi. Her family’s income from her husband’s work as a police officer couldn’t cover a trip to America without financial help.

Eventually, she connected with Alicia Curran, ATN Site Coordinator at the Thompson Center. Alicia is also a parent of a child with autism.

“From the beginning, she was willing to help me. She said she understood our challenges,” Xhevi said.

After about five months of planning and putting together community and center resources, Alicia delivered the good news in January that the Thompson Center would be able to bring Xhevi and Amelia to the center for services for the month of June. The Ronald McDonald House provided lodging for the duration of their stay, within easy walking distance of their appointments at the Thompson Center.

In addition to a formal diagnosis and treatment evaluation for Amelia, Xhevi worked with specialists to understand what she can do at home to help improve Amelia’s difficulties with communication and to be more prepared as she grows into new challenges. Amelia was seen by a developmental pediatrician, psychologists, occupational therapists, speech therapists, a dietician, and had more than 25 hours of behavioral therapy consultation and services during her four-week stay.

Behavior and occupational therapy work focused on independence with daily living skills, including self-care, dressing and daily routines. And, most of the work was parent-focused, so Xhevi could incorporate these strategies into their home lives.

“Xhevi was an excellent parent to train,” said Brooke Burnett, a training specialist and behavior analyst. “These adaptive life skills are foundational before she can tackle academics in school.”

Training also prioritized advancing Amelia’s social communication using visual supports, social stories, and other ways to prompt her to communicate. Many things that Xhevi had been doing, like preparing Amelia for their flight to the U.S. by showing her a model of an airplane and explaining the steps involved in air travel, were already on the right track.

“We showed her mom more sophisticated ways to do what she was already doing, and how to apply them to more situations,” said occupational therapist Brittney Stevenson.

Xhevi has an eager audience awaiting her in Albania, where she said families of special needs children are social outcasts in their communities. They find support in each other and share their experiences to learn from each other.

Her friends who also have children with autism are eager to hear what Xhevi learned from the Thompson Center specialists about effective supports and therapies with their own children.

“I learned a lot of things and I am sharing my new knowledge with my friends in Albania,” Xhevi said after returning home. “These parents are suffering so much. I worry for other children, especially for poor families who can’t raise their voice.”

Thompson Center researchers present at international autism conference

Columbia, Mo. (July 21, 2016) — In May, 19 researchers from the Thompson Center presented findings at the world’s largest autism research conference, the International Meeting for Autism Research, or IMFAR, in Baltimore, Md.

About 1,800 researchers from around the world attended the conference May 12-13 to hear the latest developments in nearly every field studying autism, including health sciences and medicine, education, biology and genetics, and social sciences.

The 16 research posters presented by Thompson Center faculty and graduate students spanned a similar range of topics, including teacher training, sleep and behavior problems, and the role of neurotransmitters and neural networks in autism symptoms.

“IMFAR is the world’s biggest showcase for the latest in autism research every year,” said Thompson Center Executive Director Stephen Kanne. “It’s a great opportunity to share our work at the Thompson Center and make connections with other research institutions for potential collaboration.”

For more coverage of topics at IMFAR, visit spectrumnews.org.

Youth Support Group Builds Trust and Support for Black Foster Children in Columbia

By Adrienne Cornwall

Columbia, Mo. (July 6, 2016) — When graduate student Reuben Faloughi’s program in counseling psychology brought him to the MU’s Assessment and Consultation Clinic, which later merged with the Thompson Center for Autism & Neurodevelopmental Disorders, he noticed quickly that some children he worked with were falling through the cracks.

“I began to see how a lot of the kids in foster care, they had a lot of unmet needs,” Faloughi said. In particular, young black teens seemed to be lacking guidance at a time when their identity as adults is just beginning to form. “It’s an age where people are trying to figure out who they are.”

Along with Dr. Connie Brooks, a psychologist at the Thompson Center, Faloughi began to develop a support group project for 13- to 14-year-old African-American boys in foster or adoptive care in Columbia. And he called it The Dream Team, a name that hints both at what he hoped the group would be to each other and at the skills they would take away from their experience over the 10 weekly sessions from January to March.

“We’re like teammates, we look out for each other,” Faloughi said. “Hopefully when they leave the group, they will have identified their dreams and aspirations, and they will also have identified skills to reach those dreams and how to put people around them who are going to help them reach their dreams.”

On the last evening the group met, Faloughi expanded the team roster with a visit from two friends, MU alumni Chris Crosby and Darren Morton, who said they were surprised at how poignant the group’s questions were.

“It takes such a special child to be able to open up,” said Morton, a local youth football coach who has worked with youth for 14 years with a range of issues from mental health and behavioral challenges to struggles with addiction. “You can tell what they built in that room was real and effective.”

Along the way during their sessions, the participants offered a lot of give and take with Faloughi, who played dual roles as part facilitator and part educator in discussions about traditional adolescent issues – school, sports, self-esteem, girls – as well as black history and culture.

“For some of them, this is the first time someone has talked about race with them,” Faloughi said. “A lot of black kids think that the history of black people started as slaves in the United States. They have no idea about Africa and what black people were doing, or of the African scientists, or African intellectuals that were in Egypt.”

Discussions about race were not only centered on history but also what the children were experiencing in the current national climate.

“There is no one definition of what it means to be a black male, or a black person in general,” Faloughi said. “Once we created the environment where they felt comfortable sharing, I was blown away by how much insight they had.”

Crosby’s message in the last session was that having support would be key to their success and that effective communication is an important skill to develop throughout life, and he acknowledged that trust could be a barrier to communication for these young men.

“It can be hard trusting people,” Crosby said. “These kids are strong for what they’ve been through and the perseverance they’ve showed.”

Faloughi found as the group progressed that the children would open up about their instincts when they felt they had been treated unfairly, and not only that, but to label their feelings about those experiences, which is difficult for many children at this stage of development.

“People in the group have talked about wanting to pull their skin off,” Faloughi said. “Being able to emotionally articulate that, talking about feeling less than or feeling bad, being able to put labels on emotions, I was surprised.”

Faloughi hopes that other providers can take the Dream Team concept further by establishing similar groups in school and community settings.

“This is life-altering for these kids,” Faloughi said. “It’s very important to create spaces for these kids – all-black spaces but also multicultural spaces so that we can learn from each other. Both are equally important.”

Autism care improved, diagnosis time shortened by new MU program

From Medical News Today, June 1, 2016

Wait lists for a specialist to confirm an autism diagnosis can be agonizing and last months. As the prevalence of autism and autism spectrum disorders increase, so does the demand for a health care system that is fully equipped to respond to the complex needs associated with autism. Now, Extension for Community Healthcare Outcomes (ECHO) Autism, a new program from the University of Missouri, is training primary care providers in best-practice care for autism spectrum disorders. Initial results of the pilot program found significant improvements in primary care provider confidence in screening and management of autism and in utilization of specific tools and resources.

“We are very excited about the initial results from the ECHO Autism model,” said Kristin Sohl, associate professor of child health and the director of ECHO Autism. “Children with autism can show symptoms as early as 12 months; however, in too many cases children may not receive a diagnosis until they are 5 years old. Early diagnosis is critical for children with autism, and primary care providers play an important role in that initial process.”

The ECHO model connects primary care providers to academic medical centers using videoconferencing technology. This allows one-on-one training in diagnosis, screenings, treatment protocols and care management. The ECHO model was created by Sanjeev Arora, MD, from the University of New Mexico and first demonstrated effectiveness in improving outcomes for hepatitis Cand has expanded to address other complex medical conditions such as rheumatoid arthritis, diabetes and addiction. Now, MU researchers have developed the first ECHO model to be applied to the care of children with autism in an effort to reduce disparities for underserved and rural children and their families.

“Currently there are not enough specialists to manage the number of children with autism who need health care,” said Micah Mazurek, assistant professor of health psychology in the School of Health Professions and lead author of the study. “A real need exists to assist community-based health care providers as they help families get the answers they need without traveling or waiting to see a specialist. Preliminary data from the pilot program suggests ECHO Autism can help with that issue.”

ECHO Autism clinics are conducted using high-quality secure video conferencing technology to connect participating primary care clinics to a panel of experts based at the MU Thompson Center for Autism and Neurodevelopmental Disorders. The panel includes a pediatrician specializing in ASD, a clinical psychologist, a child and adolescent psychiatrist, a dietician, a social worker, and a parent of a child with autism. The primary care providers maintain responsibility for care of their patients using the expert panel to build skills and discuss issues.

In testing the pilot, researchers found that participating primary care providers demonstrated significant improvements in confidence across all domains of health care for children with autism–screening and identification, assessment and treatment of medical and psychiatric conditions, and knowledge of and referral to available resources. Future research on ECHO Autism is being conducted through the Autism Intervention Research Network for Physical Health and will expand the reach of the program to 10 additional academic centers connecting with primary care providers across the US and Canada.

ECHO Autism is a partnership between the MU Thompson Center for Autism, MU Health and the Missouri Telehealth Network Show-Me ECHO program. The study, “ECHO Autism: A New Model for Training Primary Care Providers in Best-Practice Care for Children with Autism,” was published in Clinical Pediatrics. The program received financial support from the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services, the Autism Speaks Autism Treatment Network, the Leda J. Sears Charitable Trust and the WellCare Innovation Institute.

Facility dog Rhett makes new friends at Thompson Center

COLUMBIA, MO (May 31, 2016) — Since joining the Thompson Center in April 2015, Thompson Center facility dog Rhett has helped clients in medical and behavioral clinics make great improvements.
In the fall, Rhett helped nurse Tammy Hickman with a blood draw for a young girl who was screaming just at the mention of it. When Rhett sat by her chair, the girl was able to pet him and eventually calm down.
“I think she will look forward to coming back to the clinic because even though the blood draw wasn’t fun, she will look forward to possibly seeing Rhett,” said Hickman. “She kept telling Rhett he did a good job, and ‘You did it, Rhett.’”
Rhett also helped Dr. Connie Brooks with a long-term therapy patient who she had trouble getting through to for some time. When she decided to introduce him to Rhett, she had more of a breakthrough with him than she had in a long time. Rhett is slated to join them again for future appointments.

Research study leads to “blitz” of 48 diagnostic appointments

COLUMBIA, MO (May 31, 2016) — Staying on the cutting edge of research is one of our values, and in December, the Thompson Center launched a new research project testing a video screening tool, Cognoa, in an effort to reduce waitlist times for families referred to the Thompson Center.

As part of this effort, the Thompson Center’s autism diagnostic providers completed a pilot “blitz week” for four days April 25 through 28, during which the regular clinic schedules were rearranged to accommodate 48 diagnostic visits in four days. In a typical week, only eight autism diagnostic appointments are available.

Families participating in a blitz week appointment also agreed to test the Cognoa technology. Cognoa is an online screening tool that allows parents to upload videos of their children using an iPhone or Android smartphone. Upon analysis of the video by Thompson Center staff, parents will receive a personalized estimate of their child’s risk for autism and developmental delay. Using Cognoa’s mobile app, parents can find peace of mind knowing that they’re taking active steps to support their child’s development, according to Cognoa’s website.

The video screening tool is not meant to replace an in-person evaluation, but rather to fast-track the screening process for children at high risk for developmental delay and match families with the correct services quickly and more efficiently.

“Sometimes it’s very hard to verbally explain what you’re seeing in your child, and this app allows parents to videotape what they’re seeing, which is very impactful for us to see,” said Clinical Services Manager Krista Hughes. “It provides us with a better idea of the child’s development path – pictures speak louder than words.”

Thompson Center Joins Launch of SPARK, Nation’s Largest Autism Research Study

COLUMBIA, Mo. – University of Missouri’s Thompson Center for Autism & Neurodevelopmental Disorders, today helped launch Simons Foundation Powering Autism Research for Knowledge (SPARK), an online research initiative designed to become the largest autism study ever undertaken in the United States. Sponsored by the Simons Foundation Autism Research Initiative (SFARI), SPARK will collect information and DNA for genetic analysis from 50,000 individuals with autism — and their families — to advance scientists’ understanding of the causes of this condition and hasten the discovery of supports and treatments.

The Thompson Center is one of a select group of 21 leading national research institutions chosen by SFARI to assist with recruitment. The SPARK effort is being led locally by Thompson Center Executive Director Stephen Kanne and his team at MU.

“The Thompson Center was one of three sites to pilot the study beginning in December 2015,” Kanne said. “We earned recognition as a model site for the Simons Simplex Collection in 2007 – the largest genetic family study of autism to date – and due to the high caliber of our work, we have continued to partner with the Simons Foundation’s autism research arm ever since. We were honored to be selected to pilot this study for the last six months in preparation for this national launch.”

Autism is known to have a strong genetic component. To date, approximately 50 genes have been identified that almost certainly play a role in autism, and scientists estimate that an additional 300 or more are involved. By studying these genes, associated biological mechanisms and how genetics interact with environmental factors, researchers can better understand the condition’s causes, and link them to the spectrum of symptoms, skills and challenges of those affected.

“SPARK empowers researchers to make new discoveries that will ultimately lead to the development of new supports and treatments to improve lives,” said Kanne. “Which makes it one of the most insightful research endeavors to date, in addition to being the largest genetic research initiative in the U.S.”

SPARK aims to assist autism research by inviting participation from a large, diverse autism community, with the goal of including individuals with a professional diagnosis of autism of both sexes and all ages, backgrounds, races, geographic locations and socioeconomic situations.

SPARK will connect participants to researchers, offering them the unique opportunity to impact the future of autism research by joining any of the multiple studies offered through SPARK. The initiative will catalyze research by creating large-scale access to study participants whose DNA may be selectively analyzed for a specific scientific question of interest. SPARK also will elicit feedback from individuals and parents of children with autism to develop a robust research agenda that is meaningful for them.

Anyone interested in learning more about SPARK or in participating can visit www.SPARKforAutism.org/MUTC, or call Amanda Shocklee at 573-884-6092

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About SPARK

SPARK (Simons Foundation Powering Autism Research for Knowledge) is a national autism research initiative that will connect individuals with a professional diagnosis of autism and their biological family members to research opportunities to advance our understanding of autism. SPARK’s goal in doing so is not only to better understand autism, but to accelerate the development of new treatments and supports.

SPARK was designed to be easily accessible to the entire autism community and was fashioned with input from adults with autism, parents, researchers, clinicians, service providers and advocates.

Registering for this first-of-its-kind initiative can be done entirely online and at no cost. DNA will be collected via saliva kits shipped directly to participants. Once the SPARK participant’s family has returned their saliva samples and provided some medical and family history information, the SPARK participant will receive a $50 gift card. SPARK will provide access to online resources and the latest research in autism, which may provide participants and families with valuable information to help address daily challenges.

For researchers, SPARK provides a large, well-characterized cohort of genetic, medical and behavioral data, and will result in cost-savings for researchers by reducing start-up costs for individual studies.

SPARK is entirely funded by the Simons Foundation Autism Research Initiative (SFARI).

Nixon proposes $5 million more for MU’s Thompson Center

From The Maneater, Jan. 25, 2016

MU’s Thompson Center for Autism and Neurodevelopmental Disorders could serve more families in the 2017 fiscal year with a $5 million appropriation proposed by Gov. Jay Nixon. These funds are part of an additional $131 million in state and federal funding for the Department of Mental Health’s Division of Developmental Disabilities.

The Thompson Center will search for a new building to expand its research, training and diagnosis and treatment practices. Spokeswoman Adrienne Cornwall said the center will be glad to perform more diagnoses and provide families with more support and programs with the funding.

“When families are awaiting a diagnostic appointment or services, it can be a difficult time,” Cornwall said. “So being able to help more families and help them faster is what it’s really all about. I think that’s what the governor had in mind, is that more families will get services and see an improvement in their children’s development by coming to see our providers.”

In his State of the State address Jan. 20, Nixon spoke of the origins of his passion for mental health.

“My mom taught kids with developmental disabilities,” Nixon said in the address. “She worked hard at a job she loved, cared deeply for others and always stood up for what she knew was right … She passed away before I became a state senator. But I am still trying to live up to her expectations and ideals.”

The proposed $5 million will go toward both acquiring a property sensible for training, research and offices and outfitting the space with equipment.

Transferring the center’s training and research functions to a new building will potentially allow an additional 2,000 clinical visits to the current location per year, Cornwall said. In 2015, the Thompson Center provided 9,392 visits to 2,082 distinct patients. Their clients include primarily kids 0-18 years old, but also some adults seeking support throughout their lives.

At the new facility, the center hopes to expand its large group training capabilities, vetting 28 new care providers per year over the next five years. The trainees include interns from a diverse array of health disciplines who will be taught how to use diagnostic tools and perform best practices.

Cornwall said the Thompson Center is one of few centers in the country that excels in all three primary areas of autism care: training, treatment and research. The Thompson Center research core collaborates with medical disciplines but also with engineering, computer science and genetics to stay innovative in the field.

Beyond research and treatment clinics, the center has robust training programs not only for future providers but for families, health professionals, teachers and the business community. It facilitated more than 8,000 instances of online and in-person professional and parent trainings in 2015, Cornwall said.

The center’s strength is recognized locally, regionally, nationally and internationally. Clients come from counties as far as five to six hours away. Executive Director Stephen Kanne is an independent trainer of the Autism Diagnostic Observation Schedule II, or ADOS-II. He and the training staff are sought by school districts regionally and at centers internationally.

“We are very grateful for Gov. Nixon’s ongoing support for the Thompson Center,” said Thompson Center pediatrician Dr. Kristin Sohl. “And we are grateful to the state of Missouri for providing resources to be on the cutting edge of autism care and for providing best practices.”

The Thompson Center’s accolades are part of a larger story where Missouri, and Columbia specifically, have fixed themselves as front-runners in autism awareness and care.

Organizations like the world-class developmental medical care and the many research teams streaming from MU make Columbia an inclusive community that rallies around individuals with all sorts of disabilities, Cornwall said.

The Thompson Center does its part in facilitating awareness by training in Columbia Public Schools and teaching businesses about autism through their Autism Friendly Business programs.

“I think Columbia just has such great care and a lot of organizations in the community to support people with disabilities, so it makes it a great place for families to thrive,” Cornwall said.

The governor’s proposed budget, by Missouri law, will be reviewed and approved by Legislature by May. Nixon doesn’t expect much friction on the mental health issues, according to Columbia Missourian coverage.