Doing By Seeing

“There is no substitute for experience.” It’s a time-worn adage that has proven itself many times, especially in the educational sphere. Dr. Casey Clay, an assistant professor of special education at the University of Missouri College of Education and the Thompson Center, has taken the proverb to heart by developing a virtual reality simulator which allows Applied Behavior Analysis (ABA) students to gain hands-on experiential learning on how to work with children with special needs. This training and educational system allows students to gain important experience without worrying about the safety of the children and the students.

“When working with children with special needs, especially children with severe behavioral problems, it is important for behavior analysts to understand how to best help these children so they will not harm themselves or others,” Clay said. “Virtual reality allows our students to learn these skills in a safe environment, so that when they begin working with real children, they will be prepared for any challenges that may arise.”

As a part of this educational endeavor, Clay also is collaborating with Dr. Bimal Balakrishnan, an associate professor and director of the Immersive Visualization Lab (iLab) in the MU Department of Architectural Studies to perform research on the effectiveness of the virtual reality training simulator.

The two researchers have built virtual reality simulations of behavioral therapy sessions with children with severe behavior problems.

Wearing virtual reality goggles, students immerse themselves in these simulations and treat the simulated patients as they would in a real-life therapy session. Students can interact with the patients and receive real-time feedback from the simulator and their instructor, who monitors their actions in real time.

Clay has studied the simulator with 13 student participants, comparing it with traditional ABA training methods, such as PowerPoint slide instructions and lectures. He has found that the virtual reality simulator is much more effective in teaching skills including managing problem behavior, how to teach appropriate communication skills to children, giving positive feedback for positive behaviors, and how to ignore negative behaviors.

“We have shown this to be a valuable teaching tool for students to learn skills to identify when a child might become harmful to themselves or others,” Clay said. “Once students can learn these skills safely, they can then transition into real-life therapy sessions, including sessions with Thompson Center patients, to learn additional intervention skills while helping those patients grow and learn themselves.”

Clay has plans to present and publish his findings, as well as expand the virtual reality simulator training to other groups, including parents of children with severe behaviors. He also hopes this method of training will be valuable for other professions that work with children with special needs and will look to expand in those areas as well.

Raising Laughs

The Diagnosis

Relocating your family to a new city can be a challenge during the best of times. In May 2011, the Madigans had just moved from the Lake of the Ozarks to Columbia as a result of a work transfer. During this already stressful time, John Patrick and Ellie Madigan began to notice problems with their oldest son, Patrick.

a photo of the Madigan family — John Patrick and Ellie Madigan with their children Patrick, 10, Thomas, 8, and Kevin, 5.

“Something was off,” John Patrick said. “Friends and family noticed it too. He had difficulty communicating, he only had a three-word vocabulary. Things just weren’t what we thought they should be.”

Patrick and his parents visited the Thompson Center to have a further evaluation and that is when they received the news. Three-year-old Patrick had autism.

“It’s terrifying, it’s horrible,” John Patrick said. “You’re fearful, you don’t know what to do. What do we do next?”

The Madigans credit the Thompson Center and its many caring providers and staff for helping with those next steps.

“They were great, they helped provide services and therapies, helped us find other community resources,” John Patrick said. “The doctors and nurses helped explain what was going on and really gave us a path forward. We really had to learn what we can and can’t control with Patrick and his autism.”

Raising Laughs

Fast forward to 2016. Patrick had enjoyed remarkable growth. And they wanted to find a way to give back. John Patrick’s sister just happened to be nationally renowned comedian and entertainer Kathleen Madigan. After discussing it with members of the Thompson Foundation for Autism, of which he is a board member, John Patrick approached his sister about the possibility of an event to support the Thompson Center.

picture of Kathleen Madigan — Kathleen Madigan performs at the Missouri Theatre in 2017.

“Kathleen loves supporting causes like this, it wasn’t even a question to her, she was immediately on board,” John Patrick said.

Another nationally renowned comedian, Lewis Black, happened to be a long-time family friend of the Madigans. Lewis and Kathleen had done many charitable events in the past, including the support of one of Lewis’s passions, the Cystic Fibrosis Foundation.

“We were at an event with Lewis, raising money for cystic fibrosis, and we brought up the idea of an event to support the Thompson Center and to raise awareness for autism,” John Patrick said. “Lewis might have said ‘yes’ even faster than Kathleen. He wanted to know how he could help. So we pulled him in too.”

In May 2017, Kathleen and Lewis were met with the roars and laughter of a near-sellout crowd filling the Missouri Theatre in downtown Columbia. That event, which was sponsored by the Thompson Foundation for Autism, raised more than $100,000 for the Thompson Center, money that directly supported programs and providers who help so many families.

“We have one of the nation’s leading autism centers right here in Columbia,” John Patrick said. “By bringing in these comedians, who are both family and nationally recognized themselves, we hoped and still hope to shine a light on this amazing resource right here in mid-Missouri.”

picture of Lewis Black — Lewis Black performs at the Missouri Theatre in 2017.

The event was so successful that everyone involved couldn’t wait to do it again. The date has been set and the tickets have been printed. On May 6, 2019 Lewis Black & Friends return to the Missouri Theatre to benefit the Thompson Center.

“The event in 2017 was so amazing and so successful, the Foundation, Lewis, everyone, were just chomping at the bit to do it again,” John Patrick said. “We are so excited and grateful that Lewis and everyone wanted to return and provide more support to the center that has done so much for our family and so many families around Missouri.”

A Path Forward

Over the years, friends and family say Patrick has made remarkable strides. He’s now 10, working his way through 5^th grade.

“He has come far, but he still is an enigma at times,” John Patrick said. “We don’t really know what tomorrow will bring with him, but we know we have support whatever that might be.”

While the Madigans may have a path forward, albeit an ever-changing one, John Patrick wants to help make sure other families are able to experience similar support that they received from the Thompson Center and the community. He hopes the upcoming Lewis Black & Friends event in May will be a way to help ensure that happens.

“The autism experience is a challenging one for any family,” John Patrick said. “If we can make that experience less dramatic then we will have done something positive. If we can raise money that will lead to improving one family’s life, even one person’s life who has to deal with the challenges of autism, then it will be worth it.”

With the Madigans pushing forward, and amazing support from Lewis Black & Friends, it’s clear that many lives will continue to be improved at the Thompson Center.

To buy tickets to the Lewis Black & Friends Comedy Event in May, visit https://oss.ticketmaster.com/aps/muconcerts/EN/link/buy/details/9im0.

To sponsor the event, contact the Thompson Foundation for Autism at 573-884-6185.

Reaching for the Summit

Autism research is making great strides internationally in places such as Europe and Canada, due in large part to large, collaborative research systems established in those areas. These systems allow researchers across continents to share knowledge and work together toward mutually established research goals. While there are some collaborative systems in the U.S., currently no large collaborative initiatives exist that integrate the top-down approach of clinical research and the bottom-up approach of basic research. How to establish such a system in the U.S. was the looming question that brought together dozens of leading American autism researchers at the third Thompson Center Research Summit in the fall of 2018.

Organized by Thompson Center researcher and University of Missouri professor Dr. David Beversdorf, these leading autism experts gathered to create a plan for modernizing how autism research is performed in the U.S.

“We as a nation have fallen behind other countries in this aspect of autism research production, due in large part to a lack of support for a large cohesive collaborative structure which allows researchers to better work together,” Beversdorf said. “We joined as a research summit to find a new way forward to gain ground in advancing autism research here in the U.S.”

However, once the summit began and the topic of creating a similar research collaborative structure as other countries was discussed, the summit took an unexpected turn.

“The consensus of the room was that while it is true that we as a nation were already behind in this collaborative area, the best approach may not be trying to recreate what is already being done.” Beversdorf said. “Instead, why not devote our time and resources in directions where we as a nation already have a foot forward and advance those areas?”

As a result of the summit, participants formed a few subgroups to advance several of these very areas. First, a group was organized to work on organizing existing and future autism biomarker databases so that they can be integrated.

“Thanks to monumental efforts of several research organizations, we have a growing list of databases across the country that hold valuable biomarker data which may help us understand the various causes of autism,” Beversdorf said. “If we can integrate these different data sets, it will allow for expanded research into these biomarkers, which will further help determine what factors lead to very specific subsets of autism. However there are significant barriers to accomplishing this, ranging from differences in formatting to differences in types of data registered, which need to be addressed.”

Another subgroup from the summit will work on expanding the capacities of systems like the Preclinical Autism Consortium for Therapeutics, where a range of rodent models targeting the various known causes of autism can be systematically compared for responses to treatment, perhaps even expanding models to include induced pluripotent stem cells, where a patient’s own cells can be utilized to examine the cellular responses to treatment.

Finally, a group led by Dr. Beversdorf will explore the possibility of writing a paper about the need for a new stage in clinical trials called an open label biomarker exploratory trial. This stage would identify autism research participants who have specific biomarkers that would most likely be affected by a specific clinical trial.

“Autism is a very diverse disorder, with many different subsets, most of which we are still working to identify,” Beversdorf said. “Often, clinical trials for autism therapies are unsuccessful overall, resulting in a negative study, but the drug did work for a specific subset of patients with autism. We haven’t done a good job of identifying and targeting our participation pool to those subsets that may be most positively affected. So when a trial comes back as a failure, it may still have success for that small population, but it looks unsuccessful because the results for the rest of the population outweighed the benefits for this specific subset of autism.”

Despite taking an unexpected turn and heading in an unforeseen direction, the third Thompson Center Research Summit can be considered a success.

“It was heartening to hear from other leading autism research experts and to come to the consensus that we as a group can find novel ways of understanding the heterogeneity of autism, harnessing the outcomes of the European and Canadian collaboratives, as well as other sources,” Beversdorf said. “Rather, we were able to find ways to integrate our strengths with the previous efforts of others and continue moving forward in directions that will be most productive.”

The 2018 Thompson Center Research Summit took place as a part of the 13^th annual Thompson Center Autism Conference in St. Louis. The summit was funded by the Thompson Center, the University of Missouri School of Medicine, BioNexus KC, and the University of Missouri Radiology department.

A Dress for Santa’s Helper

Many kids look forward to Christmas: the music, the decorations, the lights, the presents, Santa. For Sam Haworth, Christmas is a year-round affair.

“Sam loves Christmas and has a tree in her room all year round,” said Denise, Sam’s mother.

Visiting Santa every year is especially important to Sam. A special occasion she anticipates months in advance.

“Sam looks forward to this all year long,” Denise said. “She lives by her calendar so she has put all the ‘important’ dates to her on it and she tells me when things are coming up. Even if she doesn’t know the exact date, she tells me that the month for this or that is coming up.”

Not only did Sam anticipate her annual Santa visit this holiday season, she even saved up her birthday money for a special outfit for the day.

“We were out shopping and I turned my back on her for what seemed like just a second and when I turned around she was standing there holding this elf dress and accessories. She had gone around and picked up all the items she felt were necessary to make it work. She knew exactly what she wanted.

“She likes being helpful so in her mind being an elf would be helpful to Santa. Sam wanted an outfit that she could get multiple uses out of, so she wanted it to help with our volunteer work at a senior residence facility and for Santa and just to wear during the holidays.”

Sam loves her visits with Santa not least of which because of the amazing volunteers that put on the one-on-one event at the Thompson Center. Sam lives with autism and has been a patient at the Thompson Center for several years. The strides she has made over that time are apparent through her Santa visits each year.

“That first visit years ago, Sam was really shy and timid and it took her a while to warm up to Santa,” Denise said. “She seemed to not know what to do with Santa that first year, we had to encourage her to get beside him and talk to him.

“Fast forward and she went from being super timid and shy to walking in with confidence, excitement and a take-charge attitude. This year she walked up to Santa and climbed into his lap and hugged him. She has even written him letters and brought them in to read to him.”

Denise says Sam’s hard work at the Thompson Center has helped her overcome a number of obstacles.

“She was set up with some amazing therapists, they have helped her with her speech (so she could talk with Santa with confidence), some of her food pickiness. We worked through the steps trying new things like the cookies and hot cocoa so she could make the decision that she doesn’t like hot cocoa.

“Sam’s occupational therapists also helped her with her hand-writing skills so she could write her letters to Santa. Sam also has had some social group therapies that helped her with social settings and appropriate behaviors and responses to different things.”

These skills and behaviors have helped prepared Sam for a life of thriving with autism. While she may have outgrown her Santa visits by next year, Denise says her experiences at the Thompson Center will always be with her.

“The dedicated people at the Thompson Center truly want to make a difference in families lives make us so happy. They care and it shows! We have found numerous resources to look into to help Sam as she grows and we haven’t been disappointed yet.”

And it’s impossible for those who will be assisted by “helper elf Sam” in the future to be disappointed either.

Faculty Spotlight — Dr. Rose O’Donnell

picture of Dr. Rose O'Donnell — Dr. Rose O’Donnell is an assistant clinical professor at the University of Missouri School of Health Professions and a psychologist at the Thompson Center.

Growing up in St. Louis as the youngest of six children, Dr. Rose O’Donnell has always been used to being around kids. A lot of kids. But it wasn’t until she was in high school that she began to realize that people with special needs, both kids and adults, were who she wanted to spend her career working with.

In high school, O’Donnell volunteered for Team Activities for Special Kids (TASK), which is a sports camp for special needs children. She also volunteered for another camp, in which she worked with older individuals with special needs, which is what sparked her interest in pursuing a career that could help these people further.

“I always had an interest in psychology, and found such fulfillment spending time with people with special needs, but I discovered a passion for helping them as well,” O’Donnell said.

This led her to the University of Missouri where she earned her undergraduate degrees in psychology and sociology, as well as masters and doctoral degrees in school psychology. While working toward her doctorate, O’Donnell studied under Dr. Janine Stichter, a professor in the MU College of Education and an affiliated faculty member at the Thompson Center.

“I first experienced the Thompson Center when I participated in the Training in Interdisciplinary Partnerships and Services (TIPS) for Kids program,” O’Donnell said. “That program, which is housed at the Thompson Center, really helped open my eyes toward the possibility of working specifically with children. It was an awesome experience.”

After completing that program, O’Donnell was inspired to pursue further work at the Thompson Center, completing an internship under Dr. Brooks in the Thompson Center diagnostic clinic. This experience taught her how to diagnose autism and other neurodevelopmental disorders in children. It also grew her love for the Thompson Center and its mission.

“I always knew the Thompson Center was an amazing place, but the opportunity to serve as an intern, working directly with patients and with the providers here really opened my mind to just how special it is,” O’Donnell said. “The atmosphere is unmatched in terms of everyone doing what is best for our patient families. That is always number one, and I loved that.”

After completing her studies, Thompson Center leaders made an effort to retain O’Donnell as a full-time faculty member and diagnostician. The choice was easy for her.

“I knew that at this early point in my career I still need mentorship and a place where I can continue to grow, and I definitely have that here,” O’Donnell said. “All of our amazing providers create that atmosphere of continued growth and everyone harbors the patient-first attitude that is so vital to everyone’s success.”

As an assistant clinical professor in the MU School of Health Professions and the Thompson Center, O’Donnell works in the diagnostic clinic, evaluating children of all ages to determine if they have autism spectrum disorder or some other neurodevelopmental disorder. It’s a job she has loved from the start.

“Children with autism, while challenging, can be really fun to work with,” O’Donnell said. “You never have the same day twice, you never know what will happen one moment to the next. Our patients provide a different perspective on the world, which is always interesting to see. I also love working with parents and families, to help provide them with answers and give them a path forward. It’s so rewarding.”

O’Donnell also is researching best ways to improve how the Thompson Center works with patients who speak English as a second language. Because of communication barriers, O’Donnell and Thompson Center faculty member Dr. Kerri Nowell are working to develop new clinic procedures to better provide care for those families. Because putting the patient first isn’t just O’Donnell’s mantra, it is the Thompson Center’s calling card.

Down Through the Chimney

Santa found his way back down the Thompson Center chimney this holiday season! This is a special opportunity for our patients and their families to get some one-on-one time with jolly old St. Nick! Santa’s visitors got to take photos with him as well as a special gift for each child. Here are a few of our favorite photos from this special time.

A heartfelt thanks is due to Laura Hinkel and Vince Eversgerd for their generous help in making Santa visits special for many of our patients. Thank you Laura and Vince!

Dr. Paul Offit Visits the Thompson Center

Thompson Center faculty and staff were pleased to welcome Dr. Paul Offit to the center for a question and answer session with the vaccination advocate. Paul Offit is a pediatrician specializing in infectious diseases and an expert on vaccines, immunology, and virology. He is the co-inventor of a rotavirus vaccine that has been credited with saving hundreds of lives every day.

Offit says that the false and erroneous connection between autism and vaccines caused many people to question vaccinations, however since that connection has been scientifically debunked by dozens of studies, that false perception has thankfully begun to dissipate.

“On average, our lifespans as Americans are 30 years longer than they were 100 years ago,” Offit said. “That is almost entirely due to vaccinations and improvements in sanitation.”

While in Columbia, Offit also addressed the University of Missouri School of Medicine and MU Health Care faculty, staff and students in large lecture.

Offit is the Maurice R. Hilleman Professor of Vaccinology, professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and the director of the Vaccine Education Center at The Children’s Hospital of Philadelphia. He has been a member of the Centers for Disease Control and Prevention (CDC) Advisory Committee on Immunization Practices. Dr. Offit has published more than 160 papers in medical and scientific journals in the areas of rotavirus-specific immune responses and vaccine safety as well as several books advocating for childhood vaccinations.

A Spooky Halloween at the Thompson Center

Thompson Center patients, their families, and Thompson Center staff and faculty children had a haunting good time at the Thompson Center Trick or Treat event on Halloween 2018! Take a look at some of the fantastic costumes!

A Game Homecoming

Thompson Center patients and their families joined in on the Mizzou Homecoming fun by decorating and riding the Thompson Center parade float. This year’s parade theme featured board games, so to decorate the float, several Thompson Center patients, their families, and TC staff painted large puzzle pieces to don the float. The art project resulted in an amazing way to raise autism awareness in the Mizzou Homecoming Parade!

Student Spotlight — Meet Deija McLean

Deija McLean knew since she was in high school that she wanted to work with children with disabilities. Growing up, she volunteered at a school for children with disabilities and genuinely enjoyed spending time and working with children with special needs. After earning her bachelor’s degree in school psychology from Ohio State University, McLean gained her first experience in working with children with autism when she began studying for a doctoral degree at the University of Arizona. There she met a family that would not only change the direction of her career, but her life as well.

“Working as a behavior technician, one of my first clients was a four-year-old boy with autism,” McLean said. “Learning to work with him, watching him grow and advance, and watching his family grow with him was an experience that I’ll never forget. It really showed me that autism was an area where I wanted to dedicate myself; to learn more so I can help more people like my first client.”

Despite moving to the Thompson Center to continue her studies and to pursue her doctorate in school psychology from the University of Missouri College of Education, McLean still keeps track of her first client family.

“I still keep in touch with his family and look at pictures of him growing up that his mother sends me,” McLean said. “He’s seven years old now and it’s amazing to see his growth and advancement, and his family’s perseverance throughout their challenges.”

McLean’s first client continues to inspire and drive her as she takes full advantage of her opportunities for education and training at Mizzou and the Thompson Center. McLean has a passion for both diagnosing children who have autism and neurodevelopmental disorders, as well as treating them with Applied Behavior Analysis (ABA) therapy.

At the Thompson Center, McLean just completed a year-long clinical placement as a graduate clinician on the psychology team, diagnosing children with autism under the supervision of Dr. Kerri Nowell. Currently, she is working in the Thompson Center ABIS clinic, providing ABA behavior analysis for clients with autism. All while taking classes, writing her doctoral dissertation and interning in Columbia Public Schools.

“I really want to receive the full scope of the Thompson Center experience to best prepare me for a career in working with autism,” McLean said. “From the moment families first receive an autism diagnosis through creating a treatment plan and helping prepare children behaviorally and socially, I find the whole process rewarding and I want to help families by being a part of it from start to finish.”

It’s this amazing drive to learn and help families that allowed McLean to become the first recipient of the Davis Family Scholarship at the Thompson Center. The Davis Family Scholarship provides annual support to a 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. Criteria that McLean surpasses at every turn.

“I am thankful for the Davises and their amazing support, as well as for the Thompson Center and the opportunities it provides,” McLean said. “Coming to Mizzou and working at the Thompson Center, I know that I am receiving the highest quality education and best possible preparation possible to begin my career. Our patients and all families deserve the highest quality care and I am appreciative of the opportunities to train to a level where I can provide that care in the future.”

A future which is sure to see Deija McLean helping thousands of patients and families navigate the challenging world of autism.