Smashing the Record (Again!)

The Thompson Center experienced another incredible success at it’s 13th annual Thompson Center Autism Conference, once again smashing the attendance record! This year, 568 autism professionals from around the country attended the conference to connect with and learn from the leading autism experts in the nation. This breaks last year’s previous record of 496 attendees!

a photo of a women delivering a lecture from behind a podium. — Dr. Julie Lounds Taylor delivers the Friday keynote address at the Thompson Center Autism Conference.

A room full of people speaking and looking at research posters — Conference attendees enjoy a cocktail hour at the Research Poster Session, learning about amazing new advances in autism research.

a women and a man have a discussion in front of a poster — A researcher discusses her research poster with a conference attendee.

A man discusses his research with three women in front of his poster. — A researcher discusses his research on autism with conference attendees.

As a part of this year’s conference, the Thompson Center hosted several pre-conference sessions to help advance important areas of autism training and education. These included the St. Louis Parent Conference, where parents learned from Thompson Center experts about how to best care for and raise children on the spectrum and the ECHO Autism Summit, where leaders of the ECHO Autism program gathered to discuss best practices and ways to expand moving forward. Also featured was an ADOS training session, where Thompson Center leaders helped train practitioners on how to best implement the gold-standard autism diagnostic test. Finally, the Thompson Foundation for Autism hosted an Ask the Experts panel, where several Thompson Center experts answered questions from the audience about autism, including treatment methods, education and current and future research in the area.

a women gives a presentation in front of a crowd. — Parents learn from Thompson Center experts at the STL Parent Conference.

several women listen to a speaker — Parents learn from Thompson Center experts at the STL Parent Conference.

a women gives a presentation in front of a projector — Thompson Center training expert Cortney Fish gives a presentation at the STL Parent Conference.

A Heroic Success

The Thompson Foundation for Autism held their 12th annual fundraising gala in St. Louis on Sept. 28. The purpose of the annual gala is to raise money to benefit the Thompson Center for Autism and Neurodevelopmental Disorders. This year’s event was once again an amazing success, raising $381,000 to support Thompson Center programs, patients and families. The Thompson Foundation and the Thompson Center are grateful for everyone who gave so generously to this amazing cause.

A picture of Bill and Nancy Thompson speaking at a lectern. — Bill and Nancy Thompson welcome the crowd to the 12th annual gala. Joel Marion Photography

A picture of Carrie Kremer speaking at a lectern. — Carrie Kremer, the mother of a Thompson Center patient, shares her family’s story with autism. Photo Credit: Joel Marion Photography

A picture of Stephen Kanne speaking at a lectern. — Dr. Stephen Kanne, executive director of the Thompson Center, shares what the center has accomplished in the past year. Joel Marion Photography

A picture of a mother hugging her son with the father in the background. — Sue Mellanby hugs her son Nick after he shared his thoughts about his brother, who has autism. Joel Marion Photography

Sue Mellanby speaking at a lectern with her husband standing behind her. — Sue Mellanby and her husband Scott, honorary co-chairs of the gala, share their story about raising a child with autism. Joel Marion Photography

Thompson Center psychology team training a record 13 future autism professionals

As autism awareness and prevalence rates continue to rise, the need for highly trained autism experts has increased exponentially in recent years. However, a significant shortage of adequately trained autism diagnosticians and clinicians around Missouri, the U.S. and the world has resulted in months and sometimes years-long waitlists for families to receive evaluations and the care they need.

Along with providing the highest quality of autism care, the Thompson Center for Autism & Neurodevelopmental Disorders, and the University of Missouri, sees educating and training the next generation of autism care professionals as one its most important missions. This fall, the center welcomes a record 13 psychology student trainees to learn and take part in diagnosing autism under the direct, clinical supervision of the Thompson Center’s nationally recognized psychologists and neuropsychologists.

“Training future providers to work with children with autism and developmental disabilities is vital. This is particularly important in Missouri where provider shortages are significant and disproportionately affect children with disabilities, especially in rural areas,” said Dr. Connie Brooks, head of the Thompson Center psychology team and associate clinical professor in the University of Missouri School of Health Professions. “Increasing our provider workforce to provide pediatric care to these families is a priority, not just for our health profession division, but for our entire Thompson Center.”

Psychology trainees at the Thompson Center fit into one of four different levels, depending on their personal educational status and goals. Practicum students train at the Thompson Center one day a week throughout the school year in order to earn credit for specific graduate coursework at the University of Missouri while graduate assistants train at the Thompson Center as a part of an assistantship that provides tuition waivers and stipends for their graduate coursework.

Trainees working as interns complete rotations within year-long internships in order to meet requirements as part of the Missouri Health Sciences Psychological Consortium. Finally, postdoctoral fellows work at the Thompson Center fulltime in order to meet licensure standards once they complete their doctoral degrees. Dr. Andrew Knoop, a clinical professor of educational, school and counseling psychology, says training students is both a challenge and a benefit for Thompson Center clinicians.

“Training the next generation of autism clinicians not only ensures that future children and families around the world will receive the care they need, but it also helps keep us sharp as diagnosticians and faculty members,” Knoop said. “Teaching and describing complicated concepts to students is one of the best ways to make sure supervisors are up-to-date on the most important aspects of autism care as well.”

“The challenge and reward of helping trainees grow in their clinical skills was a major draw for me in coming to the Thompson Center,” said Dr. Michael Mohrland, a neuropsychologist at the Thompson Center. “The psychology team here has grown exponentially in part from our joint vision on training the most competent psychologists in their work with children and families affected by neurodevelopmental disorders. Their diverse and enthusiastic perspectives sharpen our own skills and keep us on our toes.”

As Thompson Center trainees, students begin by shadowing diagnostic clinics to observe the Thompson Center diagnostic experts working with patients. Over time, as the trainees’ knowledge and skill increases, they will begin participating in interdisciplinary collaboration, providing direct patient care under supervision, administering and scoring diagnostic tests, preparing evaluation report drafts and providing evaluation feedback to families.

“We as faculty members make it a point to meet student trainees where they are in terms of knowledge and skills,” Knoop said. “Some trainees, such as postdocs, often come in with a great knowledge base and are able to have a large degree of independence from the beginning. Other trainees have less experience and training, so we meet with them, figure out where they are, and determine what they need to learn to move them along the right track.”

As autism rates continue to rise, Thompson Center faculty are doing everything they can to help increase the number of autism experts and thus decrease long waitlists for answers that many families must endure. By increasing the number of trainees, Thompson Center leaders believe they can help increase the number of patients treated in the future exponentially. This year’s record number of psychology trainees certainly is a start.

Family Spotlight – Meet the Karrers

When Leslie and Mason Karrer first married 11 years ago, the Thompson Center was still very much in its infancy. Had a close family member not lived in Columbia and mentioned the center offhand to the Karrers years before their child was born, they might not have ever heard of Thompson Center. Needless to say, they had no idea how influential the Thompson Center would be for their family.

Six years after their wedding, the Karrers welcomed Phoebe to the world. As Phoebe began to grow and develop, Mason and Leslie became concerned with some of her behaviors. Living in the Kansas City suburb of Leawood, Kan., the Karrers reached out to Children’s Mercy and the University of Kansas Medical Center in Kansas City to get on their diagnostic evaluation waiting lists.

Remembering hearing about the Thompson Center from their relative, as well as Leslie’s status as a proud Mizzou alumna, the Karrers also reached out to the Thompson Center and were able to schedule a diagnostic evaluation sooner than anywhere in Kansas City. In May 2017, making the two-hour drive to Columbia, the Karrers were able to have Phoebe evaluated by the Thompson Center’s nationally recognized psychologists. Four-year-old Phoebe was diagnosed with autism.

“Knowing that the Thompson Center is one of the best in the country for diagnostic services, we were more than happy to make the short drive from Kansas City to Columbia,” Leslie said. “We’ve been back since for a few follow-up visits with our doctors since Phoebe’s original diagnosis.”

Leslie said that despite the long drive, coming to the Thompson Center was a great experience for her family.

“Our experience at the Thompson Center has been kind, friendly and welcoming at every step of our journey,” Leslie said. “We have found the staff to be compassionate listeners; every time we’ve come to the Thompson Center, we have felt very special. Never like a number or a cog in a machine. Each and every one of the clinicians we have met has taken the time to listen to everything we have to say, no matter how small or insignificant it may seem. The staff maintains the utmost professionalism, yet their passion and humor is transparent.”

After Phoebe’s diagnosis in the spring of 2017, she began Applied Behavior Analysis (ABA) therapy that summer, to great success.

“ABA has been just as much of a learning experience for us as parents as it has for our daughter,” Leslie said. “The biggest thing we have taken from ABA therapy is that parenting a child on the spectrum successfully will involve several behavioral changes from both the parents and the child. Even though Phoebe is the patient, my husband and I quickly realized that some of our behaviors were enabling her (undesirable) behaviors! As parents, we’re all just trying to do our best, but our ABA professionals have helped us change some of our parenting techniques so we have better outcomes with Phoebe. ABA has been a godsend for us; it’s really worked.”

After her diagnosis and ABA therapy, Phoebe now is a flourishing five year old and is beginning kindergarten this fall! Leslie’s experiences with the Thompson Center and with autism have given her a new appreciation for the value of persistence.

“Be tenacious. You will be met with seemingly long wait lists, but don’t give up. Stay the course. If you receive a diagnosis, take the time to interview several area professionals for treatment, as they will be extremely influential in your child’s outcomes. Above all, trust your gut.”

Mizzou program significantly reduces delay in autism diagnosis

COLUMBIA, Mo. – When Katie New first suspected her son had autism, she had to wait 18 months for a diagnosis. She also had to travel nearly 100 miles from her hometown of Poplar Bluff, Missouri, to see an autism specialist in Cape Girardeau. When she had similar concerns regarding her younger child, she was able to get the diagnosis in less than one month thanks to ECHO Autism, a University of Missouri program. A new study on the effectiveness of ECHO Autism shows that the program significantly reduces diagnostic wait times for young children at highest risk for autism and saved families an average of 172.7 miles in travel for diagnosis.

Student Spotlight — Mark Tapia

Autism, and helping those on the spectrum, has always been an important part of Mark Tapia’s life. He even plans on making it an integral part of his career. In May 2018, Mark graduated from the University of Missouri with a master’s degree in special education with an emphasis in autism spectrum disorders.

As a part of his education and training at Mizzou, Mark spent time working at the Thompson Center, specifically in an internship with the Training in Interdisciplinary Partnerships and Services (TIPS) for Kids program, which is housed within the Thompson Center. The TIPS program allows Mizzou graduate students from various disciplines to collaborate with each other to learn about working with children and people with special needs.

“TIPS helped me recognize the importance of listening to multiple perspectives from many disciplines, collaborating together to meet desired outcomes in the form of diagnoses, and ultimately knowing that our work is never done,” Tapia said. “We are all on a mission to improve the lives of individuals on the spectrum and their families.”

Mark’s passion for his mission to help improve the lives of individuals on the spectrum and their families comes from a very personal place. Mark was diagnosed with autism at a young age and has spent his life training to help others who share that same path.

As a member of the TIPS program at the Thompson Center, Mark served an important role as an autism self advocate. He was able to provide insight to the other students about how people on the spectrum may feel or react to certain treatment methods.

“Mark’s input was invaluable, not only as a self advocate, but as a fellow student peer of the other students training to work with children with special needs,” said Dr. Connie Brooks, director of TIPS and psychologist at the Thompson Center. “The insight he offered, as well as his passion for helping people with special needs, makes it obvious that he is destined to help many people throughout his career.”

After graduating with his master’s degree from Mizzou, Mark was accepted into the special education department at the University of Texas, where he will pursue a doctorate in special education. His ultimate career goal is to work with adolescents and adults on the spectrum during their transitions from secondary to postsecondary education. A transition that often can bring challenges, as Mark himself has experienced.

“Personally, I was able to pursue gradual transitions throughout my postsecondary education,” Mark said. “I lived at home with my parents in St. Louis while earning my undergraduate degree. I then moved in with my sister in Columbia for two years while earning my master’s degree, and now I will be living on my own in Austin while I work on my PhD.”

While this gradual transition toward independent living has worked well for Mark, he says that transitional challenges can vary based on the individual.

“Challenges will vary from individual to individual,” Mark said. “However, I would say social difficulties can be the most challenging, as well as understanding changes with puberty for adolescents on the spectrum.”

Mark hopes that his continued education at the University of Texas will further prepare him for working with these adolescents and helping guide their own paths to postsecondary success, just as Mark has earned himself.

Supporter Spotlight — Tom and Winnie Davis

When Tom and Winnie Davis learned that their young grandson Mason was showing potential signs of autism, their first thought was to look toward to the University of Missouri for help. Being alumni of Mizzou, as well as long-time supporters of the University, the Davises knew there had to be experts on campus who could help their grandson.

“We were aware of the good work the newly formed Thompson Center was doing in autism diagnosis and treatment,” Tom said. “We contacted Judy Miles, Jeanine Stichter and Janet Farmer and requested an appointment for Mason. They were all very helpful, supportive and saw Mason as soon as there was an opening.”

The Thompson Center experts diagnosed Mason with autism spectrum disorder when he was less than two years old. The Davises have been staunch supporters of the center, and autism awareness advocates, ever since. Shortly after Mason’s diagnosis, Tom, who is the retired former CEO of MC Power Companies, Inc. in Kansas City, was asked to serve on a Missouri public policy panel to study autism’s impact around the state.

“The Thompson Center, still in its infancy at the time, was extremely well positioned to become a leader in research, treatment best practices and comprehensive diagnosis,” Tom said. “I believed then, and continue to believe that the Thompson Center is the organization best able to stay at the cutting edge of all aspects of understanding, diagnosing, and treating people with autism.”

The Davises believe the center is uniquely positioned to expand the number of qualified people in all autism-related professions as well as work through public schools to enhance the recognition and appropriate treatment of children who are affected by autism. Because the Thompson Center has this ability to train the next generation of autism professionals, the Davises recently have decided to create a scholarship to support students who are earning degrees in autism-related fields and receiving training at the Thompson Center.

“Among all of the needs that autism creates, having an adequate supply of qualified providers is at the top of the list,” Winnie said. “There are still places in Missouri where the closest provider of the needed services can be an hours-long drive away. If a focused scholarship can help clear an obstacle for a student who wants to enter the field, we would consider that a victory for Mason and all of his compatriots.”

The Davis Family Scholarship was originally created years ago to serve students within three other colleges at Mizzou. After a great deal of thought and observing the progress being made at the Thompson Center, the Davises decided to focus the scholarship at the center because they believe it is engaged in the area of most critical need.

“Our greatest hope is that one day there will be an adequate number of well-trained, professional providers to appropriately serve every person with autism and every family member engaged in caring for them,” Winnie said. “With luck and continued good work at the Thompson Center our scholarship will contribute to meeting that goal.”

While the Davises are fantastic supporters of the Thompson Center in their own right, they would like to acknowledge the work and dedication of the Thompsons for their vision in creating and supporting the center for the last 13 years.

“Every family who has been through the Thompson Center would acknowledge a debt of gratitude to Bill and Nancy Thompson for their commitment to this center,” Tom said. “They set the stage for the center to attract exemplary researchers, therapists, educators and diagnosticians and gave them a place to do the kind of work that is recognized around the world for its excellence. We are grateful every day that our family was blessed by having Mason and are equally thankful that the Thompson Center staff has been with him, and us, through every step of his journey.”

The Davis Family Scholarship will provide annual support to a graduate or undergraduate student at Mizzou who is currently training at the Thompson Center and pursuing a degree in an autism-related field. The selection process and criteria for awarding the scholarship is based on the recipient’s potential career impact on individuals and families with Autism Spectrum Disorder in the area(s) of advocacy; diagnosis and identification; research; and/or treatment and intervention.

Deija McLean is the first recipient of the Davis Family Scholarship at the Thompson Center. Deija recently completed a year-long clinical placement at the Thompson Center as a graduate clinician on the psychology team under the direct clinical supervision of Dr. Kerri Nowell.

Let’s Get Physical!

One of the most common co-occurring symptoms for children with autism is anxiety. Chronic anxiety not only can lower quality of life for children and their families, but it can lead to depression as well. While anxiety can be treated with medication with some positive effect, researchers at the Thompson Center are exploring other ways to help reduce anxiety while remaining healthy.

One promising potential way to reduce anxiety is regular physical activity. A recently completed pilot study from the University of California-Irvine showed a reduction in anxiety symptoms in children with autism when they participated in physical activity on a regular basis.

Now, Dr. Lea Ann Lowery, an occupational therapist at the Thompson Center and an associate clinical professor of occupational therapy in the University of Missouri School of Health Professions, is expanding on that study in order to learn more about how well physical activity reduces anxiety in children with autism.

“We know that anxiety can really cause a lot of stress for children with autism as well as their families,” Lowery said. “Physical activity not only is important for all children in order to be healthy, but we also think it could have some really positive effects on anxiety as well. This study should help paint a clearer picture about exactly how much effect it can have.”

For her study, Physical Exercise to Reduce Anxiety in Autism (PETRA), Lowery hopes to recruit 75 children with autism and anxiety between the ages of 6 and 12. Before participating in the study, the children and their families will complete surveys about anxiety and how it effects them. The researchers also will take saliva samples. This will allow them to measure salivary cortisol levels in each child throughout the study. Salivary cortisol is a biological marker of stress and anxiety.

During the study, participants will come to the Thompson Center three times a week for eight weeks to take part in either physical activities, including cardio, strength, jumping, running and obstacle courses, or to play sedentary games such as Minecraft and Legos. Throughout and following the eight-week period, the researchers will continue to measure participants’ Body Mass Index (BMI), heartrate levels, flexibility and strength, as well as their levels of anxiety through saliva and surveys to compare the physically active group with the sedentary group

“We really hope to see a reduction in overall anxiety among all our children, as well as some potential physical improvements with their overall health,” Lowery said. “Wouldn’t it be great if doing something healthy and fun could help reduce anxiety as well? We think that will be the case, but we want to be able to prove it scientifically as well.”

The first cohort of participants for the PETRA study began this summer. The study will take three years and is funded by a grant from the Autism Intervention Research Network on Physical Health (AIR-P). Lowery and the Thompson Center researchers are partnering with researchers at UC-Irvine to conduct the study. Across both sites, researchers hope to recruit 200 children to participate.

An ECHO Heard ‘Round the World

Across the country, waitlists for autism diagnostic services at centers such as the Thompson Center are months, sometimes years, long. This problem is not unique to the United States. Globally, there is a shortage of autism experts and even simple awareness of autism, forcing families to wait long periods of time before their questions about their child’s future can be answered. In many cases, families from other countries may never have access to autism specialists.

The Thompson Center ECHO (Extension for Community Healthcare Outcomes) Autism program offers solutions by increasing access to best practice autism care for individuals with autism and their families across the globe. From its inception in 2015, the ECHO Autism program has been successful in training medical care providers to recognize autism symptoms and manage co-occurring conditions. Early success of the ECHO Autism model has created opportunities for the leadership team to mentor and coach other academic centers and organizations to replicate the program.

Now, The Thompson Center ECHO Autism team has helped pediatricians and autism experts in Mumbai, India develop an ECHO Autism program. This new team opens the door to expand the reach of ECHO Autism’s expertise to the more than 1.3 billion people in India, millions of whom have little-to-no access to autism care.

“The collaboration with the Thompson Center ECHO team has given us a wonderful opportunity to work with physicians across various states in India and neighboring countries in the space of autism,” said Dr. Leera Lobo, developmental pediatrician at the Ummeed Child Development Center in Mumbai and ECHO Autism India hub team expert. “Dr. Kristin Sohl and Alicia Curran have been extremely supportive and helpful as we adapted the ECHO Autism model for our setting. We hope to influence many more physicians through this model and improve quality of care for families of children with autism spectrum disorder.”

Using state-of-the-art video conferencing technology, ECHO Autism brings autism expertise and care to underserved communities by simultaneously connecting dozens of care providers located in rural and underserved urban areas with an autism expert “hub team.” Hub teams for ECHO Autism include an interdisciplinary team of experts. Each program builds a hub team that will best support the needs of their community. One unique quality of an ECHO Autism hub team is that they all have a parent of a child with autism. ECHO Autism was the first ECHO program to include a parent on the hub team. Due to the rich expertise that the parent advocacy experts bring to the team, other ECHO programs, in other disease states, are integrating patients and families into their hub teams.

Since its inception in March 2018, ECHO Autism Ummeed has averaged 27 participants in each of its bi-weekly sessions. These participants, many of whom are pediatricians from throughout India and neighboring countries, are able to receive valuable autism diagnostic and treatment training from the hub team of experts and then apply that knowledge to the care of their own patients.

“Expanding access to best-practice autism care is crucial for children and families to maximize opportunities for improved outcomes. ECHO Autism unites autism experts and communities to move knowledge to places in need rather than moving patients,” said Dr. Kristin Sohl, director of ECHO Autism and associate professor of clinical child at the Thompson Center. “Drs. Lobo and Sengupta are a shining example of bringing best practice autism care to communities through guided practice and mentorship. The tremendous work they are doing has the potential to touch millions of children in India and neighboring countries. We are thrilled with their success and we are looking forward to bringing best practice autism care through ECHO Autism to more global partnerships in the near future.”

The Thompson Center ECHO Autism leadership team is helping teams in Kenya, the Czech Republic, Ireland, Macedonia, Argentina and Guatemala to develop their own ECHO Autism programs. For more information about the ECHO Autism program please visit: www.echoautism.com.

Thompson Center experts find Autism screening tool effective

When a family, doctor or teacher suspects a child has autism, they look to diagnostic experts to determine the diagnosis.

However, waiting for a diagnostic appointment can be agonizing – and long. Across the U.S., the average wait time for a diagnostic appointment for autism is 13 months. One solution for speeding up the process of diagnosing children with autism accurately is the use of highly effective screening tools. These tools, if effective, can identify children who are most likely to have an autism diagnosis onto shorter diagnostic waitlists, while those identified as having a lower risk of autism can be funneled into different clinics for more appropriate services, such as for learning disabilities or other disorders.

Now, experts at the Thompson Center for Autism & Neurodevelopmental Disorders have researched the effectiveness of one such autism screening tool, called Cognoa, and found that it is effective in

a picture of Dr. Stephen kanne — Dr. Stephen Kanne, executive director of the Thompson Center.

identifying children who are at higher risk for having autism.

In a study published in Autism Research, Dr. Stephen Kanne, executive director of the Thompson Center and an internationally recognized expert in autism diagnosis, found that the Cognoa tool maintains an equal level of sensitivity, or ability to detect a risk for autism, as other respected screening tools. However, he also found that Cognoa also has a much higher level of specificity than other screening tools. This means that the tool is better at identifying those children who do not have autism.

“The combination of Cognoa’s ability to accurately identify high autism risk while doing a better job of not falsely identifying children who are not at risk makes it a valuable tool,” Kanne said. “Being able to more accurately pick out those who truly do have a higher risk for autism makes Cognoa a valuable tool for parents and teachers who don’t necessarily have diagnostic expertise.”

Cognoa is a smartphone app which allows parents to upload videos of their children responding to predetermined prompts, as well as completing a questionnaire.

The app sends the uploaded videos to a group of technicians trained to look for behaviors and symptoms of autism and assign each a numerical code. This data is combined with the parent’s responses to the questionnaire, producing the child’s score. The higher score the score, the higher the risk the child has for autism.

For the study, Kanne tested Cognoa’s ability to accurately screen for children with a high-risk of autism through a complex machine-learning algorithm, which produces a score indicating the likelihood that the child has autism.

After first having completed the Cognoa screening process, a group of children ages 18 months to 6 years who were on the Thompson Center’s autism diagnostic clinic waitlist participated in the study during a weeklong “blitz” of diagnostic appointments.

With clinicians unaware of the Cognoa score from the screening, all 225 children were then given the ADOS-2, which is the gold-standard autism diagnostic test, by diagnostic experts.

The results of the study were promising: Cognoa accurately identified children with a risk for autism 71 percent of the time.

“I believe the app’s use of video as well as questionnaires is what allows it to be so specific,” Kanne said. “Putting tools such as this one in the hands of parents not only can speed up the time it takes to diagnose children and get them the services they need, but also it empowers families to be a part of the solution themselves.”