St. Louis Cardinals help Thompson Foundation hit a home run to raise $560,000 for autism work

By Adrienne Cornwall and Abigail Dempsey

ST. LOUIS (May 5, 2015) — As honorary chairs of the annual It’s In the Cards auction and dinner, St. Louis Cardinals third baseman Matt Carpenter and his wife, Mackenzie, brought a deep bench to the Renaissance St. Louis Grand Hotel on Thursday evening.

Accompanied by about a dozen Cardinals players and General Manager John Mozeliak, the Carpenters helped the Thompson Foundation for Autism raise $560,000 to support the work of the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri.

“Funds from Thursday’s event will support the medical services, education efforts and cutting-edge research we do at the Thompson Center,” said Dr. Stephen Kanne, executive director of the center. “Every year, this event helps us continue to reach more and more families touched by autism in Missouri.”

In addition to the Cardinals, who obliged fans by autographing baseballs coming off Thursday’s 9-3 home win against the Philadelphia Phillies, Missouri Gov. Jay Nixon stopped by to congratulate founders Bill and Nancy Thompson on the center’s many successes in its 10 years of existence.

With Nixon’s signature in 2010, Missouri was among a wave of states that passed legislation requiring insurers to cover services for Applied Behavior Analysis, one of the most effective – and expensive – treatments for children with autism that was often denied by insurers.

Now in its ninth year, the annual auction featured top prizes such as a weeklong stay in Paris, the opportunity to throw out the first pitch at a Cardinals home game, and a special last-minute donation of an autographed Augusta flag and hat from USGA golfer and the 2015 Master’s Tournament champion Jordan Spieth, whose sister has autism.

“We have a very special auction item this evening,” said KMOX radio host Debbie Monterrey, master of ceremonies for the evening. “From Jordan Spieth, he says, ‘Thank you for the work you do at the Thompson Center. I feel privileged to help by signing the Augusta flag and hat.'”

Before departing the event, attendees – including University of Missouri System President Tim Wolfe and MU Chancellor R. Bowen Loftin – heard the story of a Columbia family touched by autism.

“By the time he was 3, those little red flags became big red flags,” said Alicia Curran, whose son, Sam, 14, has autism. “He almost never responded to his name.”

After years of working with specialists at the Thompson Center and at school, Sam has improved far beyond his original prognosis, even learning to read at age 10.

“You’re the best brother I could ever ask for,” said Sam’s sister, Emily, who addressed her brother on stage alongside her twin sister, Elizabeth. “The truth is, we could all learn a lot from you.”

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Fraternity hosts record-setting fundraiser for MU autism center

By Adrienne Cornwall and Abigail Dempsey

COLUMBIA, Mo. (April 27, 2015) – Sunday was a record-setting afternoon for the University of Missouri’s Alpha Tau Omega chapter, which raised more than $4,600 at its annual family festival fundraiser for patient scholarships at the Thompson Center for Autism and Neurodevelopmental Disorders.

In addition to setting a new record tally for the event’s second year, nearly 300 participants lined up to break the Guinness World Record for most high-fives in one minute with the help of Rye Shade, a local 11-year-old boy with autism.

With a GoPro camera strapped to his chest, Shade easily ran the length of the drive around the Columns in 37 seconds, high-fiving the 287 hands as he ran.

“Next year, I think we can shoot for even more participants, because we know we have the time,” said ATO Signature Event Coordinator Zach Carmichael.

Participants last year tried to break the record, too, but the entry lacked the necessary video evidence, Carmichael said. With the help of two mobile and one stationary camera, Carmichael said he hopes this year’s attempt will officially topple the standing record of 260.

The Tigers Standing Strong with Autism Festival enjoyed a bump in attendance with the help of the Columbia Area Earth Day Festival, which had been rained out the previous weekend and was rescheduled to share Peace Park with the fraternity event.

Festivalgoers could enjoy three different bounce houses, smoothies, or carnival games like a dunk tank, duck hunt, cornhole and balloon darts.

Festival proceeds will go toward a $25,000 endowment pledged several years ago by the ATO chapter to fund patient scholarships at the Thompson Center to help families afford necessary autism services.

“Our Mizzou ATO chapter has been a dedicated partner in helping individuals touched by autism in our community,” said Thompson Center Executive Director Steve Kanne. “The funds they raised at Sunday’s festival will help countless families get medical and other services that they couldn’t otherwise afford.”

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The Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri is a national leader in confronting the challenges of autism and other developmental conditions through its collaborative research, training and service programs.

MU Thompson Center, KU autism center raise more than $7,000 at Autism Border Challenge

COLUMBIA, Mo. (April 17, 2015) – University of Missouri Thompson Center for Autism and Neurodevelopmental Disorders fans faced off Tuesday with University of Kansas Center for Autism Research and Training supporters in their seventh annual Autism Border Challenge to raise funds for both organizations.

More than 100 supporters gathered at Boulevard Brewing Company in Kansas City to raise money for autism research and services at the centers. In addition to ticket sales, more than 30 raffle prizes were awarded from 56 sponsors.

KU’s Kansas Center for Autism Research and Training won the challenge with their home field advantage, bringing home 60 percent of the evening’s tally of more than $7,000. The Thompson Center won 40 percent of the proceeds for its second-place finish.

Columbia businesses the Gathering Place Bed and Breakfast, Bur Oak Brewing Company, Les Bourgeois Vineyards, Macadoodles, Tropical Liqueurs donated wine and beer gift and gift certificates, and MU athletics donated a football and basketball signed by the head coaches of the men’s teams, Gary Pinkel and Kim Anderson.

Thompson Foundation and volunteer Sarah Hakes honored with “Reaching Out” award

March 20, 2015
FOR IMMEDIATE RELEASE

CONTACT:
Adrienne Cornwall
cornwalla@health.missouri.edu
573.884.4512

ST. LOUIS (March 20, 2015) – Town & Style magazine in St. Louis has honored the Thompson Foundation for Autism and dedicated volunteer Sarah Hakes with the magazine’s Reaching Out award.

The foundation is being recognized for its support of the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri in Columbia, which serves children with autism throughout Missouri and the St. Louis area with medical care as well as behavioral and diagnostic services. The center also provides training and education to health professionals, caregivers and educators statewide and in St. Louis.

Sarah Hakes is being recognized for her many years of volunteer service as the event coordinator for the foundation’s annual It’s In the Cards charity event and auction, which benefits the Thompson Center and its clinical, research and training efforts. During her nine years as coordinator, the event successfully raised $3.7 million. The ninth annual “It’s In the Cards” event, featuring special guest Matt Carpenter of the St. Louis Cardinals, will be held April 30 at the Renaissance Grand Hotel in St. Louis.

“Her efforts demonstrate the giving nature of Sarah’s character and the important role she has played with the event since the initial gala in 2007,” said Jack Reis, a member of the Board of Directors for the Thompson Foundation for Autism.

Hakes is a native of Minonk, Ill., daughter of Mary and the late Jim Ford. She and her husband, Bill Hakes, who hails from Dana, Ill., have three children. They live in suburban St. Louis, where Sarah is a vice president with the St. Louis office of Colliers International, a major commercial real estate firm.

On April 2, national autism advocacy group Autism Speaks celebrates a Light It Up Blue campaign on World Autism Awareness Day, during which partner buildings such as the Empire State Building and Sears Tower are lit with blue light. Colliers is partnering with Bentall Kennedy to shine a light on autism by participating in Light It Up Blue in 2015.

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New help on the way for patients with autism

From KBIA, Feb. 25, 2015

A new project is underway to help better prepare physicians who work with patients with Autism. The ECHO (Extension for Community Healthcare Outcomes) Autism project plans to deliver specialized training to Missouri physicians and primary caretakers who work with patients with Autism here in Missouri. MU’s Thompson Center for Autism created the program with the help of the Missouri Telehealth Network.

Kristin Sohl is the Medical Director at the Thompson Center. Sohl led the efforts to bring the program to Missouri, and says it’s imperative that the program consists of the most knowledgeable specialists in a variety of areas related to Autism training.

“Our team is trying to pull together the best minds that we have resources for to share information and improve the knowledge base for primary care providers so that they have some of the tools we have,” Sohl said. “That, in turn, improves outcomes for kids with Autism.”

Sohl and her colleagues put together a team of experts to train physicians all over the state. The team consists of a psychologist, a child psychiatrist, a dietician, and a parent educator.

The team will train physicians through conferencing – something that isn’t common in the medical field – which will allow them to speak to people all over the state at the same time. Missouri Telehealth Network is providing the necessary software for the conferences to take place. Telehealth Senior Program Director Rachel Mutrux says she hopes that the technology ECHO uses will take some of the burden off of families with children with Autism.

“The hope is that the parents and the families of children that are effected by Autism will have a lot more comfort and recourses in their own community so they don’t always have to travel for their care and so that they can get care earlier,” Mutrux said.

State Representative Kip Kendrick helped push project ECHO through the state legislature last year, and it was ultimately approved. Kendrick says that rural Missourians will benefit most from the program.

“So many rural Missourians lack access to specialty care. So many have to drive many hours – wait an hour in a hospital or in a doctor’s office – just to see a specialist for maybe fifteen to twenty minutes. Project ECHO will train up local physicians on some of that specialty care.”

While ECHO was approved by the legislature, the appropriations Kendrick and his colleagues were pushing for were withheld. This year, he’s working to fix that.

“This year we’re trying to make sure that it gets back into the budget so we can properly fund project ECHO and expand it across the state of Missouri,” Kendrick said.

Sohl says she’s excited to be able to share the information the Thompson Center has with physicians around the state.

“There are small shifts we do – related to behavior change – that can make a major difference for a family. If we sucked up all that knowledge, and kept it to ourselves, then primary care providers don’t benefit from that.”

ECHO’s first training session is set for Wednesday, March 4th. The team will hold sessions on the first and third Wednesday of every month.

Training aims to tackle autism knowledge gap among doctors

From Disability Scoop, Feb. 24, 2015

A new effort is in the works to help train doctors and other health care providers to better serve individuals on the spectrum.

Using web conferencing and other virtual technology, the first-of-its-kind training program will bring working physicians together with autism experts for biweekly, two-hour sessions in order to learn about the developmental disorder and commonly associated issues like constipation and sleep difficulties.

Called ECHO Autism, the six-month course will emphasize a “whole-person” model of care for kids with autism and include sessions with a clinical psychologist, child psychiatrist, parent educator, social worker and a clinical dietician. During the sessions, doctors will have an opportunity to get input on their own patient cases, those behind the effort said.

The project is patterned after a method already used to remotely teach doctors how to better address specialized medical issues like hepatitis C, rheumatoid arthritis and chronic pain, but this is the first time the approach will be used to focus on autism.

ECHO Autism training will begin in March and is limited to physicians in Missouri, but Sohl said she plans to expand the offering nationally and internationally.

“Primary care doctors and nurses are the heart and foundation of pediatric medical care,” Sohl said. “Through ECHO Autism, we want to empower these providers to care for children with autism and other complex neurodevelopmental disorders. When these general practitioners feel confident in screening for autism and caring for children affected by the disorders, more children with autism will have access to high-quality autism care.”

Project aims to improve quality of, access to health care for children with autism

From Wayne County Journal-Banner, Feb. 18, 2015

As more children are diagnosed with autism, the demand for physicians specializing in autism has increased. To meet the growing demand for autism care, a University of Missouri researcher is leading an effort to deliver specialized training to primary care providers, including physicians and nurse practitioners, so they are better equipped to treat children with autism.

“Our aim is to improve quality of care and access to care among children with autism by mobilizing a community of primary care providers who are trained to meet their needs,” said Kristin Sohl, medical director for the MU Thompson Center for Autism and Neurodevelopmental Disorders. “Our goal is to help providers increase their confidence in treating common issues seen in children with autism. When specialists and general practitioners share the care responsibilities, we increase access to services for all children with developmental and behavioral concerns.”

Sohl is leading the project, ECHO Autism, with the help of an interdisciplinary team from the Thompson Center, including a clinical psychologist, a child psychiatrist, a parent educator, a social worker and a clinical dietician. The experts will conduct two-hour, biweekly training sessions with physicians using virtual technology. The autism experts will train participants on important aspects of “whole-person” care for children with autism. Some topics include evaluation and treatment of autism-related health issues such as constipation, sleep problems and possible side effects of behavioral medications. Additionally, the training sessions will allow physicians to discuss their patient cases and receive input from other participants and the team of experts.

The concept of delivering specialized training to primary care physicians is not new. The ECHO (Extension for Community Healthcare Outcomes) concept first began at the University of New Mexico as a way for medical experts to share their expertise with community providers using virtual technology, such as web conferencing. Now, several ECHO specialty programs exist, but the Missouri-led ECHO is the first focused on autism.

ECHO Autism will run March through August 2015 and is a joint project of the Thompson Center and the Missouri Telehealth Network. Although the first session of ECHO Autism only is open to physicians in Missouri, Sohl plans to expand ECHO Autism nationally and internationally in the future. Funding for the project is provided by the state Medicaid program Missouri Care and Autism Speaks’ Autism Treatment Network (ATN), which receives federal funding from the Autism Intervention Network on Physical Health. Sohl discussed ECHO Autism in a blog post for the ATN earlier this year.

The MU Thompson Center for Autism and Neurodevelopmental Disorders is a national leader in confronting the challenges of autism and other developmental conditions through its collaborative research, training and service programs. The Thompson Center is one of 14 health facilities in the ATN, a ground-breaking network of hospitals, physicians, researchers and families across the United States and Canada.

Ask the Experts

Want to know more about autism and neurodevelopmental disorders?

Send your questions to thompsoncenter@missouri.edu with Ask the Experts in the subject line or #asktheexperts via Facebook and Twitter to find your answers posted here.

We’ll update you on the latest best practices and share a new question and answer each month.

February 2015

Since the measles outbreak in California, there has been a lot of online and media discussion about vaccine safety. Is there a link between vaccines and autism?

When making decisions about your child’s health care, it can be hard to wade through all the information and make a choice you feel good about. All parents carry some burden of guilt or worry when our kids are hurt or sick.

Here is some information we hope you’ll find useful in guiding your decisions about vaccinating your children.

In 1998, a study of 12 children published in the U.K. first suggested a link between the MMR (measles, mumps and rubella) vaccine and developmental delays in those children. This single study spawned a wave of criticism of the government-recommended vaccination schedule for children in the U.K. and in the U.S. It also shined a spotlight on the lead author, Dr. Andrew Wakefield, and prompted scientists to launch much larger-scale studies to verify his findings.

In 2004, Wakefield was found to have had conflicts of interest in conducting that research: he accepted money from a law firm that was planning a lawsuit against vaccine manufacturers, and he had a financial interest in an alternative MMR vaccine product that would benefit from discrediting the standard combined vaccine. The publication retracted the study’s data interpretation, and 10 of the 13 authors retracted their contributions in light of these conflicts of interest.

In 2010, the paper was fully retracted when Wakefield was found guilty of ethical violations related to mistreatment of the children in the study and of misrepresenting the data. He also lost his medical license.

Since 1998, dozens of studies – on thousands more patients, at the epidemiological level, with stringent scientific methods – have concluded that there is no link between vaccines and autism.

Health professionals who perpetuate Wakefield’s refuted findings are not supported by the evidence, including findings published here, here, and here.

Any medicine, even an over the counter pain reliever, carries risks. For many people with conditions like asthma or gastrointestinal disorders, aspirin can make their conditions worse. Patients with liver disease risk liver failure if they take ibuprofen. And, there will be patients who have adverse reactions to vaccines. The CDC maintains a Vaccine Injury Compensation Fund to assist those patients who discover their adverse reactions after being immunized.

Vaccines, however, do not cause autism.

At the Thompson Center, we see patients with autism spectrum disorders for diagnosis and treatment. But, we also see lots of children with other developmental concerns, including premature birth, cerebral palsy, Down syndrome and multiple developmental disabilities. Some of these children have compromised immune systems stemming from their primary medical conditions. Some cannot tolerate even the very low risk of infection in vaccines and therefore can’t be immunized.

If an otherwise healthy and unvaccinated child were to contract measles, that child has an excellent chance of recovering. However, if a premature newborn or an immune-compromised child like some we treat were to come into contact – at the doctor’s office, the park, the grocery store, anywhere in the community – with a child incubating measles, that patient is at far greater risk of death or permanent disability.

We are certain that fears that vaccines cause autism are unfounded. And for the benefit of all of our patients and the wider public health, we urge all families to consider not only their own family’s situation but others in the community whose health is also affected by these decisions.

Thompson Center staff take potty talk to Columbia Public Schools autism teachers

By Adrienne Cornwall

COLUMBIA, MO (January 8, 2015) — Getting up in front of a room can be intimidating – especially when you’re talking body functions.

But when staff from the Thompson Center share tips on managing constipation in children with autism, they serve the education program with plenty of humor.

“You have to be able to laugh at potty jokes with this material,” said Alicia Curran, coordinator of the Autism Speaks Autism Treatment Network grant at the Thompson Center.

Curran, along with nurse Shawna Mabe and registered dietitian Sheila Chapman, took the Constipation Tool Kit Talk to Columbia Public Schools autism teachers on Nov. 20.

“Collaborating with the Thompson Center is a unique opportunity to gain valuable information on aspects of Autism Spectrum Disorders that affect our students both inside and outside the classroom,” said Lukin Murphy, an autism specialist for the Columbia Public School District who put the Tool Kit Talk on the agenda for this quarterly meeting of Columbia’s autism teachers.

The talk, based on the Constipation Tool Kit educational resource from national autism advocacy group Autism Speaks, offers caregivers and educators recommendations for helping identify and treat constipation safely in children with autism as well as prepare for an impact on behavior.

“When kiddos are uncomfortable, it can make attention and behavior issues worse,” said Curran.

Mabe shared information on the physical causes and ways to identify constipation in children. One of the handouts included a chart as a visual aid for categorizing the appearance of stool, which can be a clue when a child can’t communicate verbally.

Chapman recommended some easy classroom strategies that teachers can incorporate into the school day, such as allowing the student to have a water bottle at their desk, to ensure hydration, and increasing opportunities for the child to use the bathroom if constipation is suspected. Additionally, she emphasized the importance of good communication between educators and parents when there are known gastrointestinal problems.

“The presentation was very informative and will undoubtedly help us better educate students in our programs,” Murphy said.

Curran will bring another Tool Kit Talk to CPS in March on sleep issues in children with autism.

Your ATN@Work: Increasing Autism Expertise among Primary Care Doctors

From Autism Speaks, Dec. 16, 2014

By Thompson Center Medical Director Kristin Sohl

“It takes a village” is a phrase often used when discussing how we raise our children. I find it particularly apt when it comes to providing medical care for children with autism. Unfortunately, our “village” needs to expand.

The period from birth to 5 years old is such a crucial time for development and learning. Fortunately, most children see their primary care doctor more regularly during this early period than at any subsequent time in their life. For good reason, many parents – including myself – rely on our pediatrician’s knowledge to ensure our young children’s healthy development.

But did you know that most pediatricians spend less than a month of their residency learning about developmental disorders such as autism? That family practitioners spend even less time than that?

No wonder many primary care doctors feel a lack of confidence when it comes to caring for children with autism. In fact, autism can cloud the way a healthcare provider views the child’s other medical issues and behaviors.

An ear infection may be missed because the related fussiness gets attributed to “problem behavior.” Poor sleep habits that could have been improved with a few sleep-hygiene tips are instead diagnosed as “intractable insomnia” requiring referral to a sleep specialist.

A need for doctor training
Too often, we see general practitioners refer straight-forward medical issues to an autism specialist because they lack the confidence to work with children who have autism. If we can help them gain this confidence, then autism specialists can spend more time managing the complex autism-related issues that truly need our expertise. That, in turn, can increase access and reduce waiting time at autism specialty centers such as those in the ATN.

The ATN steps in
Through the Autism Speaks ATN, we’re doing just that. All our centers are working in various ways to learn about the needs of primary care providers in our communities and help them better serve their patients with autism.

At our center in Missouri, we’re building the nation’s first ECHO-Autism.

ECHO stands for Enhancing Community Healthcare Outcomes. It’s an innovative approach for training primary care providers to deliver specialty care, pioneered at the University of New Mexico. Its goal is to “revolutionize medical education” and work with general practitioners to “provide best-practice specialty care and reduce health disparities.”

The heart of the ECHO model is to provide knowledge-sharing networks led by teams of medical experts who use videoconferencing to conduct virtual training clinics with community providers. (Learn more about Project ECHO Program here.)

Introducing ECHO-Autism
Through our ECHO-Autism program, primary care providers in Missouri will be able to connect to an expert “hub” of autism experts for two-hour training sessions every other week. Participants will discuss their cases and learn from each other and our team of experts. They get help handing these cases with short lectures on key topics. These will focus on important aspects of “whole-person” care for the child with autism. These topics will include evaluation and treatment of autism-related health issues such as constipation, sleep problems and possible side effects of behavioral medications.

This type of case-based learning provides practitioners with an ongoing opportunity to develop their skills and meet our community’s needs. It goes beyond teaching providers how to provide better care. It goes back to building that village.

We are excited to announce that we will be piloting ECHO-Autism from March through August of 2015. We’ll be receiving support from the Autism Speaks ATN, in its role as the federally funded Autism Intervention Network on Physical Health (AIR-P). We’re also receiving funding through Missouri Care, our state’s Medicaid program.

Many primary care physicians have already expressed interest in participating. And we’ve not yet begun formal recruiting!

A stronger village, a brighter future

Through virtual technology and adult learning science, ECHO Autism can help demystify autism for our primary care providers. It will give them the expertise and strategies they need to serve our growing autism community.

Primary care doctors and nurses are the heart and foundation of pediatric medical care. It’s time we start empowering them to take care of children with autism and other complex neurodevelopmental disorders. When our general practitioners feel confident in screening for autism and caring for children affected by it, we’ll see our medical village meet the needs of our children.