COLUMBIA, Mo. – Autism is a spectrum of closely related symptoms involving behavioral, social and cognitive deficits. Early detection of autism in children is key to producing the best outcomes; however, searching for the genetic causes of autism is complicated by various symptoms found within the spectrum. Now, a multi-disciplinary team of researchers at the University of Missouri created a new computational method that has connected several target genes to autism. Recent discoveries could lead to screening tools for young children and could help doctors determine correct interventions when diagnosing autism.
Faculty Spotlight — Dr. Kerri Nowell
Growing up in the Middle Eastern country of Oman, Dr. Kerri Nowell’s experiences with disability and how different cultures treat disability began early. One of six children, Nowell’s younger brother was born with a hearing impairment. A neighboring Omani family also had a child who was born deaf around the same time.
While Nowell’s family treated her brother no differently than any of their other children, the Omani family, as influenced by their Middle Eastern culture, kept their young girl with a disability out of the public eye.
“Even though our families were friendly and spent time together, we rarely saw their daughter who had the hearing impairment,” Nowell said. “It opened my eyes at an early age to the differences in how people with disabilities are treated. While my brother was allowed to participate in every activity, the little girl rarely was allowed to leave the house. This disparity really stuck with me, even years after moving out of the Middle East.”
Nowell credits these early experiences with helping develop her passion for working with children with disabilities. After moving to the United States to attend college, Nowell spent years working in schools as a school psychologist. In those years, she gained an interest, and a later a passion, in developmental disorders and how they affect children.
In order to learn more, Nowell left the public school system and secured a position as a site supervisor for the Simons Simplex Collection before pursuing a doctoral degree in school psychology in Houston. During her time with Simons she met Dr. Stephen Kanne. Later, as a doctoral psychology student, Nowell worked with Dr. Kanne while he was the director of the autism center at the Texas Children’s Hospital in Houston.
Soon after, Kanne moved to the Thompson Center as the executive director, and after Nowell completed her degree, Kanne offered her a position as a postdoctoral fellow at the Thompson Center.
“The opportunity to move Columbia and be a part of such a nationally renowned institution like the Thompson Center was impossible to overlook,” Nowell said. “Getting the opportunity to work at such an amazing place with high-caliber colleagues and amazing patients has been wonderful.”
After spending a year as a postdoctoral fellow, Nowell accepted a position in 2017 as an assistant professor of health psychology at the Thompson Center and the School of Health Professions at the University of Missouri.
In that position, Nowell serves as a clinical psychologist and diagnostician, helping to assess and diagnose as many as five children a week with autism and other neurodevelopmental disorders.
Nowell also is passionate about research and has plans to conduct many different research projects on autism and developmental disorders in the future.
“My previous work with Simons inspired in me a strong interest in genetic research in autism,” Nowell said. “I’m very interested in how differences in genetics among children play out in terms of their behaviors. If we can establish what specific genetic differences cause specific behavioral patterns, we can better treat individual patients and meet their specific needs.”
Additionally, Nowell is interested in researching ways to improve early autism diagnosis in minorities and lower income people. She also wants to investigate females with autism and how their repetitive behaviors might differ from males with the disorder.
As one of the newest members of the Thompson Center faculty, Nowell has already made huge contributions treating patients in the clinic and performing research. And she has only just begun!
MU online curriculum helps children with autism develop better social skills
By Cailin Riley, MU News Bureau
COLUMBIA, Mo. – One in 68 children in the United States has some form of Autism Spectrum Disorder, which impairs a child’s ability to communicate and interact with peers. Because of the social challenges these children face, many efforts are being made to find new ways to help children with autism develop their social skills. iSocial, a classroom curriculum designed by University of Missouri researchers to help children with Autism Spectrum Disorder cultivate better
social skills, has been licensed by Nascent Stage Development LLC to develop the program into an expansive, online virtual world. Nascent will contract with other online educational companies to make the lessons available to millions of families and educators worldwide.
iSocial helps children with autism develop better social skills by leading them through a guided lesson plan that incorporates evidence-based strategies. In the virtual world, children, parents and teachers will be able to collaborate and interact using personal avatars. Janine Stichter, professor of special education and the author of the iSocial curriculum in the MU College of Education, collaborated with Jim Laffey, professor emeritus in the College of Education, to develop the initial online platform. Stichter said a digital platform enhances the ability to reach more students.
“An online format of iSocial increases opportunities for children with Autism Spectrum Disorder because it gives them opportunities for repeated practice and feedback that are hard to find in a typical classroom,” Stichter said. “The digital platform also helps children build connections and friendships with other students, and provides families and educators access to an interactive platform that supports student learning.”
Bob Etzel, the president and founder of Nascent, and his team have agreements with commercial partners that will provide powerful channels for the program. iSocial is working with Sandbox and Co., an online education company, to reach more than 20 million children, teachers and parents worldwide, every month.
A representative from the MU Office of Technology Management and Industry Relations successfully pitched iSocial to Etzel through Whiteboard2Boardroom, a University of Missouri-Kansas City Innovation Center program that gives entrepreneurs and corporations an early look at innovations coming out of Missouri and Kansas research institutions.
“Identifying promising faculty innovations like iSocial and finding companies like Nascent that will further develop and commercialize them is the primary role of our office,” said Chris Fender, director of the Office of Technology Management and Industry Relations. “We’re excited that this partnership enables MU’s pioneering autism curriculum to reach more children, no matter where they live.”
Stichter provides support to the MU Thompson Center for Autism and Neurodevelopmental Disorders, which provides evidence-based assessment and treatment services for children with autism spectrum disorder and their families. Nascent will start selling the paper version of iSocial immediately; construction on the virtual world begins this March. More information about this project can be found at www.isocl.net.
Editor’s note: Janine Stichter’s last name is pronounced “Steester,” rhymes with Easter.
Diagnosing a New ECHO Model
Across the country, waitlists for autism diagnosis services at centers such as the Thompson Center are months, sometimes years, long. This forces families to wait long periods of time before their questions about their child’s future can be answered. The Thompson Center is helping to combat these long waitlists for services, as well as a lack of access to autism specialists in underserved areas, through ECHO Autism. ECHO Autism launched in 2015 and has been greatly successful in training medical care providers around Missouri and the country in how to detect autism and provide treatment.
Following the success of ECHO Autism for primary care providers, the Thompson Center is expanding the program to include ECHO Autism: Diagnostics. This new program uses the same principals as ECHO Autism: Primary Care, but is focused on training professionals on how to diagnose autism using the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2), the gold standard in autism diagnostic tools. Dr. Stephen Kanne, executive director of the Thompson Center and the leader of the ECHO Autism: Diagnostics hub team, says this new program will help shorten waitlists for families around the country.
“Having to wait months and months to receive a diagnosis can be incredibly hard on families,” Kanne said. “By using technology to train providers around the country on how to diagnose autism themselves, we can help reduce those waitlists as well as provide better access for families who live in rural and underserved areas. Rather than have to drive two or three hours to see an autism specialist, we can train providers in communities around the country so families can have quality care in their own home towns.”
Using state-of-the-art video conferencing technology, ECHO Autism brings autism expertise and care to underserved communities around the nation by simultaneously connecting dozens of care providers located in rural and underserved urban areas with an autism expert “hub team” located at the Thompson Center. The hub team for ECHO Autism: Diagnostics will include a neuropsychologist and autism diagnostician, a developmental-behavioral pediatrician, an autism assessment specialist, a family resource specialist, and a parental advocacy expert.
“This team of experts will provide valuable training and support for participants looking to learn more about how to detect and diagnose autism among their own patients and communities,” said Dr. Kristin Sohl, the director of ECHO Autism. “By increasing the number of professionals trained in autism diagnostics, we can shorten waitlists and allow patients to receive care locally rather than have to travel hundreds of miles in some cases to receive care.”
ECHO Autism: Diagnostics is open to professionals interested in autism diagnostics including psychologists, nurse practitioners and other licensed health care professionals. Sessions will take place twice a month and will include case presentations from the participants to the hub team. The hub team then will provide feedback and guidance to the participants, including what types of additional questions the provider should ask the patient or what other testing might be necessary to make a proper diagnosis.
Through guided practice, participants will increase their knowledge of evidence-based practices for screening and diagnosis, standardized assessment measures for evaluating autism, and common medical and psychiatric concerns in children with autism.
“Providing local autism diagnostic services will allow specialized centers like the Thompson Center to be able to focus on the more complex, difficult cases,” said Kourtney Christopher, an autism assessment specialist and member of the ECHO Autism: Diagnostics hub team. “If we can train providers to recognize and diagnose the most clear and obvious cases of autism themselves, it will not only help those families receive care sooner, but will help families with more complex needs to be seen at the Thompson Center and other autism centers more quickly as well.”
Thompson Center faculty and staff also have recently started two additional ECHO Autism programs, including ECHO Autism: School Psychology and ECHO Autism: Applied Behavioral Analysis. These programs use the same videoconferencing approach with the “hub team” of experts to train providers on best practices for working with people with autism in their specific fields. Long-term plans include the creation of additional programs in order to train providers in all fields on how to best care for patients with autism.
ECHO Autism Diagnostics begins in January with a three-day in-person ADOS-2 training session. The videoconferencing sessions are set to begin in April. For more information about ECHO Autism Diagnostics, contact Kourtney Christopher at christopherkl@health.missouri.edu or (573) 882-6140.
Family Spotlight—Meet the Garijos
The world is a big place, but the power of technology, and the love of family, is making it smaller every day. Erika and Denis Garijo were living in their home country of Brazil when their two-and-a-half year old son Tomas was diagnosed with autism. While the news was difficult for the Garijos, it also provided relief to finally have some answers.
“I think it’s always a shock,” Erika Garijo said. “We didn’t have any relatives or close friends with ASD so all of this was super new and unknown for us as parents. But our love was powerful enough to encourage us in any kind of situation and we moved forward reading all that we could, looking for professionals to teach us and doing all that we were able to do to help our son to have a happy life.”
Unfortunately, autism services are very limited in Brazil, and those that do exist are very expensive.
“The closest Applied Behavior Analysis (ABA) services were far from our city and were so expensive that we could not afford them,” Erika said. “No specialists are covered by health insurance in Brazil, so we always had to pay for everything.”
Because services in Brazil were so lacking, the Garijos decided they need to start looking elsewhere for ways to help Tomas. In 2014, the Garijos were planning a trip to the United States for a close friend’s wedding. The wedding was going to be in Columbia, Missouri. What a small world.
“We already had realized at that point that the USA was so much more advanced than Brazil in terms of autism research and resources,” Erika said. “I wanted to take the opportunity to have an evaluation of Tomas performed, so I googled about autism centers near Columbia and to my surprise there was a center in Columbia. The Thompson Center at the University of Missouri. We managed to schedule an evaluation during the week we would be here in June 2014.”
The Garijos were able to see Thompson Center pediatrician Dr. Kristin Sohl, who told the family that Tomas needed to be in a place where he could receive the proper expert care he needed.
“Dr. Sohl was so wonderful and we fell in love with her and the whole team,” Erika said. “She told us that they could help Tomas to develop better if he was here and that he needed to have ABA and specialized therapists. I came back to Brazil with a tight heart. We knew what he needed but we couldn’t offer it to him. Our city did not have professional experts. He was receiving some therapies there, but we had not seen much progress.”
After much thought and prayer, the Garijos made the decision to try and move to Columbia. Thankfully, Denis received an offer to work as an associate pastor at a church in Columbia. He also is pursuing a master’s degree in theology at Calvary University in Kansas. After waiting a year to receive visas, the Garijos made the big move to mid-Missouri.
18 months later, Tomas is now eight years old and making amazing strides. He has been receiving ABA services as well as speech/language therapy and occupational therapy (OT). The Garijos say they have seen great improvements in every area.
“He is doing much better with his fine motor skills from his work in OT; he now can write many words when he used to not be able to even hold the pen,” Erika said. “We also can see the improvements in his verbal language from his speech therapy. When we got to the United States, he just spoke single words such as milk, juice, etc. He had a good vocabulary but he couldn’t build sentences. Now, he is saying entire sentences such as: ‘let’s go to the Thompson Center’ and ‘Let’s go to see Ryan’ (or some of his other therapists).”
The Garijos also have seen Tomas make incredible advances with his behavior.
“We can see how the ABA is helping in his behavior and learning,” Erika said. “He is more focused now and they have helped us with issues like safety (he used to run away) and aggression (we are working on that right now). He also is interacting better with us too and using more eye contact. It’s so nice to see him growing and gaining so many skills.”
Tomas’s successes also are translating into success in school. In Brazil, Tomas was placed in a regular school with a paraprofessional who lacked appropriate training. In Columbia, Tomas is in a special class and he has an individualized education plan (IEP). The school is in touch with Thompson Center and every month they align what he is learning with what skills and subjects they need to continue to practice.
“It is amazing that the Thompson Center can exchange information with the school and they can share goals and strategies,” Erika said. “At home he is much more aware and interactive. We can play more in an appropriate way. He is using much more verbal language, he is doing so many things that he didn’t do before coming to the Thompson Center. I can say that in the last year and a half his progress has been greater than in the previous four years since the diagnosis.”
Every family affected by autism has a long journey ahead of them. Literally and figuratively, the Garijos already have traveled thousands of miles on their autism journey, with many more miles yet to go. But they say they have found a home far away from home here in Columbia.
“The Thompson Center staff and professionals really care about helping our son and helping us as family,” Erika said. “It is not just Tomas who receives care, but we as parents have learned a lot and so we can help him even more at home. In addition to learning, we feel embraced and encouraged. The Thompson Center is truly a blessing to our family and to so many others that I see daily.”
Researcher Spotlight: Dr. Janine Stichter
Who: Dr. Janine Stichter, professor of special education, MU College of Education
Bio: Dr. Stichter grew up in Davenport, IA and received her education from the University of Iowa. Dr. Stichter has been on the University of Missouri faculty since 2002 and has been involved with the Thompson Center since its inception in 2005, serving as an associate director of the Thompson Center for several years.
What are your research Interests?
“My primary focus is on behavior change to support increased use of prosocial behavior. In other words, I’m really interested in developing the social competence of those experiencing challenges getting their needs and wants met within the context of daily life. Much of my recent work has been targeted in the areas of social skills assessment and interventions for children with Autism Spectrum Disorder and similar social behavior needs. Specifically, through my research, my team and I have developed the Social Competence Intervention (SCI), which is an evidence-based intervention for children with special needs to teach them important social skills. We also have developed the General Social Outcome Measure (GSOM) to help us measure the effectiveness of social skills interventions. We hope this measure will help teachers determine the progress of their special needs students so they can adjust their curriculum accordingly.”
How did you first get involved with autism research?
“I have always wanted to help connect people in some meaningful manner. As an undergraduate student, I wanted to be a diplomatic interpreter and work for the United Nations. As a side job, I was hired to work at a group home for young boys, all whom had behavior challenges, including some with autism. The job did not require a car, so I thought I would give it a try. I found a whole new world and opportunity to serve others. I also found that I had some natural skills for changing and promoting positive behavior, no matter what language these children were speaking, such as aggressive behaviors or other alternate forms of communication. So in a sense, I am still an interpreter!”
What motivates you to work so hard in this field?
“My happy place is helping people, specifically helping them realize their dreams and potential. I was born in Germany and lived there until I was five years old. English was my second language and I clearly remember what it was like not being understood as a child. I feel like this field represents work to help all of us understand and support one another better. Along the way, I also adopted a son with autism and cognitive impairments. Through those experiences, I have come to understand that the need is always real and to celebrate every moment, even when those moments don’t necessarily represent what we had planned.”
Sowing SEEDs of Knowledge
Identifying what factors create risks for autism, as well as protect against autism, is one of the most important goals in the field of autism research. The Thompson Center is helping to advance this goal through its participation in the national Study to Explore Early Development (SEED) project.
Funded by the Centers for Disease Control and Prevention (CDC), this national study seeks to gather a wide sample of data from children and families across the country, including families with children with autism, typically developing children, and children with other developmental disabilities.
“One of the biggest challenges in the autism research field is being able to understand what factors, such as genetics and environmental changes, make children more at risk for developing autism,” said Dr. Stephen Kanne, executive director of the Thompson Center. “If we can understand these factors, as well as what factors might protect against autism, we potentially can give parents strategies for helping to reduce autism risk for future children, as well as develop better treatments for people with autism.”
The Thompson Center joins the SEED project in its third phase. By forming a valuable partnership with researchers at Washington University in St. Louis and Children’s Mercy Kansas City, the three research groups have created MO SEED, the sixth SEED site in the U.S.
“Our partnership with Wash U and Children’s Mercy will allow us to recruit participants from 22 counties in Missouri, further contributing to SEED’s rich, diverse data set,” said Kanne, who is the primary investigator for the Thompson Center site of MO SEED. “Further, it will help us continue to build strong relationships with leading autism experts on both sides of the state, setting the stage for future research collaborations.”
The participation process for SEED includes a phone interview, written questionnaires, and for some families, a developmental assessment. This assessment will include play-based tests for the child, questions for the parents, a brief physical examination to collect information such as height and head size, and saliva collection and a blood draw from the parents and child.
The MO SEED group will begin its recruiting process this fall, and that process will run through 2020. MO SEED hopes to recruit more than 350 participants from 22 counties in Missouri during this project. For more information about MO SEED, visit: mo-seed.org.
Researchers Developing Virtual Reality Platform to Teach Behavioral Intervention Skills
“Learning by doing,” also known as The Missouri Method, is a central educational pillar of the University of Missouri. Providing behavior analysis students hands-on working experiences with behavior therapy patients at the Thompson Center is a great example of this educational pillar at work. However, it is important for behavior analysis students to gain certain skills before they work directly with children with special needs.
Now, Dr. Casey Clay, an assistant professor of health psychology at the University of Missouri, is developing a virtual reality simulator to allow students to get hands-on experiential learning 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 will allow 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.”
For his research, Clay is collaborating with Dr. Bimal Balakrishnan, an associate professor and director of the Immersive Visualization Lab (iLab) in the MU Department of Architectural Studies. The two researchers are building virtual reality simulations of behavioral therapy sessions with children with severe behavior problems.
Wearing virtual reality goggles, students will be able to 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.
“We believe this will 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 also hopes to use this technology in the future to help train parents on how to interact with their children with severe behavioral problems.
Clay and Balakrishnan plan to conduct a pilot study of this virtual reality simulation in the spring of 2018. If successful, they will conduct further research and begin to implement the simulations into educational curriculum.
New Measure Helps Determine Health Independence Levels for Young Adults on the Spectrum
As adolescents with autism transition to adulthood, many questions arise about how prepared they are to take on adult responsibilities, such as driving, getting a job and living on their own. One important aspect of this transition is the individual with autism’s level of independence regarding their own health. Now, Dr. Nancy Cheak-Zamora, an associate professor of health sciences at the University of Missouri and a Thompson Center researcher, has developed a measure that can determine the level of health-related independence (HRI) among individuals on the spectrum.
“For those people on the spectrum who are transitioning into adulthood, it is important to understand what skills and knowledge they have and what skills they lack pertaining to managing their own health,” Cheak-Zamora said. “It’s also important to measure what level of independence these individuals want to have regarding their health so we know what skills we need to teach them. The goal is to help them reach a level of independence that makes them feel fulfilled.”
Cheak-Zamora says health-related independence includes a large array of knowledge and skills, including understanding their own medical conditions and history, the ability to schedule doctor appointments, pick up and correctly take prescription medicines, monitor changes in health, and how and when to appropriately ask questions and bring up problems while at a doctor appointment.
“For people who are typically developing, many of these skills are learned while observing their parents during adolescent stages of growth,” Cheak-Zamora said. “However, for individuals on the spectrum, these skills often need to be specifically taught and reinforced with practice.”
The HRI measure examines nine different aspects of health independence, including communication skills and goal-setting. Cheak-Zamora says her HRI measure can help parents, teachers and other caregivers determine an adolescent’s current level of health independence and how much independence they truly seek. Once these levels have been determined, teachers and parents can work on building these health skills in their children with autism to achieve an appropriate level of independence based on the individual’s desires and their abilities.
This research is funded by a three-year U.S. Department of Defense grant which has been extended to a fourth year. Cheak-Zamora currently is working on publishing her HRI measurement study and hopes to have it in press in early 2018. Cheak-Zamora says the next phase of this research is to secure continued funding to spread the use of the HRI to caregivers and parents.
New Study Examines How Cats Might Help Families with Autism
Previous research at the Thompson Center has suggested that pets might help reduce anxiety and stress for children with autism. Dr. Gretchen Carlisle, a research scientist at the Research Center for Human-Animal Interaction (ReCHAI) in the University of Missouri College of Veterinary Medicine has conducted several surveys of families with children on the spectrum and found that dog ownership often has benefits including companionship, stress relief and opportunities for their children to learn responsibility. However, Carlisle says dogs may not be the best option for every family.
“While we did find positive outcomes for families who own a dog, dogs aren’t a great idea for some families,” Carlisle said. “Dogs are high maintenance and require families to be present at home to be cared for and exercised. That may be difficult for some busy families. Also, dogs can be full of energy, loud and in-your-face. For some children with autism who have certain sensitivities, these traits might create stress and anxiety rather than reduce it.”
Carlisle believes that while dogs work for many families, cats might be better suited for some families.
“Cats can be very low maintenance,” Carlisle said. “You can leave them alone for a weekend and they will be just fine. Also, they are quiet and, if they are mild tempered, can make great companion animals for children with sensitivities.”
In order to test this idea, Carlisle currently is recruiting families with at least one child on the autism spectrum. Participant families cannot currently have any free-roaming animals in their homes (e.g. dogs, cats, ferrets, etc.) however caged animals such as fish or hamsters are allowed.
Families must agree to adopt a cat permanently from a pre-identified group of mild-mannered cats at a local shelter. During the 18-week study, food and litter will be provided by the research team. Members of the research team will travel to the participant families’ homes periodically to measure stress in the cats, social skills and anxiety levels of the children, and the attachment of the parents to their newly adopted cat.
“It is important to determine how having a pet, particularly a cat in this instance, affects the entire family,” Carlisle said. “Even if a cat is helping to reduce stress and anxiety for a child with autism, if pet ownership is adding additional stress for the parents, it may not be the best option for that family.”
Families interested in participating in this study must live within a 75-mile radius of Columbia. If interested, contact Gretchen Carlisle at: CarlisleGK@missouri.edu or call the research office at 573-882-2266.