Autism, developmental disabilities get big budget recommendations from Nixon

From St. Louis Post-Dispatch, Jan. 20, 2016

COLUMBIA – Gov. Jay Nixon’s final budget recommendations as the head of the state’s executive branch will include significant investments in developmental disabilities.

Nixon, a Democrat, announced Friday he is recommending lawmakers drop $131 million of state and federal funds into the Department of Mental Health’s Division of Developmental Disabilities for the 2017 budget year that begins July 1.

On Wednesday, the governor will present his budget recommendations to the Legislature at the annual State of the State. It will be Nixon’s eighth and final time recommending a state budget because he is termed out as governor.

This increase includes $5 million to expand the University of Missouri’s Thompson Center to allow for 2,000 more visits each year and the training of 100 more providers over the next five years.

“Here in Missouri, we believe that all children — including those with autism — deserve the opportunity to live up to their God-given potential,” Nixon said Friday at the center.

His recommendations also include $1 million to launch an autism clinic at Truman State University and $500,000 to expand services at the Mercy Kids Autism Center in the St. Louis region.

It also includes $14 million to keep the waiting list for in-home Medicaid services for developmentally disabled individuals at zero.

Nixon already has proposed a $55.7 million increase for colleges and universities across the state.

Lawmakers will have to sign off on all of Nixon’s budget recommendations for them to become a reality.

Gov. Nixon announces disability services investment to include $5 million expansion of Thompson Center

COLUMBIA, Mo. (Jan. 15, 2016) — Gov. Jay Nixon announced today his Fiscal year 2017 budget will include historic investments in developmental disability services for Missourians, including a $5 million expansion of the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri.

“Here in Missouri, we believe that all children – including those with autism – deserve the opportunity to live up to their God-given potential,” Gov. Nixon said. “From passing landmark autism insurance legislation to expanding access to in-home services through the Partnership for Hope, we have made Missouri a nationally-recognized leader in caring for our most vulnerable citizens. This year we will build on this legacy with historic investments in services for Missourians with developmental disabilities, including a major expansion here at the Thompson Center.”

The expansion, announced before an audience of patients, families, providers and community leaders, will allow the Thompson Center to accommodate an additional 2,000 visits per year by expanding dedicated research and training space, and train 100 more providers over the next five years to alleviate the shortage of autism services in Missouri.

“Our researchers come from many disciplines across the university, from medicine to psychology to genetics to engineering. Bringing all their labs under one roof will make it easier for individuals with autism to participate in our research studies and foster even more innovative collaboration among our faculty,” said Thompson Center Executive Director Dr. Stephen Kanne. “We’ll also be able to expand our clinical services to accommodate more than 2,000 additional clinic visits each year, getting more children the diagnostic and treatment services they need.”

Read the Governor’s full news release here.

Columbia takes off as a progressive city that understands autism

From Columbia Missourian, Jan. 6, 2016

COLUMBIA — Karen O’Connor remembers why she came to Columbia. Almost a decade later, she feels vindicated.

O’Connor, now a member of the training and outreach division at the Thompson Center for Autism and Neurodevelopmental Disorders at MU, moved to mid-Missouri from Cleveland in 2006. She wanted a place where she could teach and belong to a community that specialized in helping with disabilities.

As others have done in recent years, O’Connor found Columbia to be the place for her. While the city provides many resources for individuals with disabilities, its growth as an autism-friendly community has been particularly evident.

“I don’t think there are many places out there that can provide as much as Columbia can when it comes to our efforts and what we can offer,” O’Connor said. “There are so many more opportunities and ways people with autism can get the help they need.”

Although a number of factors have led to Columbia’s newfound status as a prominent autism community, three general themes tie everything together: the Thompson Center, new business practices that accommodate people with autism and the city’s overall appeal.

Autism is a neurodevelopmental disorder of which understanding is still new and public perception hasn’t yet developed into fully nuanced opinion. The disorder is characterized by compulsive behavioral patterns and difficulties with social interactions; those who have it typically display intense passions in specific interest areas.

In 2014, approximately one in 68 Americans fell somewhere on the autism spectrum. That spectrum works on a scale that ranges from severe autism on one end to high-functioning conditions such as Asperger Syndrome on the other.

Regardless of where an individual with autism appears on the spectrum, anyone who does is considered to have an autism spectrum disorder.

Like most widespread conditions or diseases, the public is aware of autism. They have a general idea of what it is, and they know people with autism or autism spectrum disorders need assistance and are a growing voice.

They don’t, however, always know how to provide assistance to those who need it.

“There’s been some hesitance in the past because people don’t know what they can do to help others,” said Anna Laakman, a team member of the Thompson Center’s training core and outreach division.

“That’s where we’ve come in. … We want to help Columbia and Mizzou become places people turn to and can look to for the resources they need.”

Thompson Center: Columbia’s autism hub

Despite its enlightened reputation, Columbia wasn’t particularly involved in autism research and development until 2005. Then, a gift from MU graduates Bill and Nancy Thompson helped establish the Thompson Center.

The center’s mission is to “improve the lives of individuals and families affected by autism and neurodevelopmental disorders through world class programs that integrate research, clinical service delivery, education and public policy.”

Its existence has been a starting point for research and autism-related programs that have helped Columbia accommodate those affected by the disorder on a daily basis.

“It all starts with research,” Laakman said. “So many people think of autism as this scary thing that we don’t know much about yet.

“Making a community better for those with autism will always be an important goal, but we also want to find out more about how autism affects the brain and development.”

Close affiliation with a well-funded research university has helped the Thompson Center. In addition to the center’s own staff and faculty members, it also has a wide variety of university professors as collaborators.

For example, Thompson Center staff member Judith Miles and biological engineering professor Gang Yao have been working for years with children to track eye pupil movement — individuals whose pupils take longer to react to specifically designed flashing lights are more likely to exhibit autistic tendencies.

Through his professional expertise, Yao recently developed a device that can track eye movement in ways that don’t require children to sit still throughout the testing.

Conducting such research, however, comes down to more than spending money and developing research strategies or equipment. It also requires a staff that can find willing children to participate in such research efforts, and that can be a difficult subject for parents.

“It’s the question of how we can get people to believe in what we’re doing,” Laakman said. “Some parents don’t know much about autism, so how do you come across them and say, ‘Hey, we think it would be beneficial if we tested your son or daughter?’

“That’s not always an easy sell, but the fact we’re able to do it says a lot about Columbia and the staff we have (at the Thompson Center).”

Although those on the spectrum face lifelong battles with social skills and other difficulties, being able to diagnose it at a young age can help them develop the proper skills.

For O’Connor, Columbia is the ideal place to do so. She knows countless families who have moved to the city from near and far, many citing the Thompson Center’s reputation for working with and accommodating children.

“When you’re dealing with any disability, that’s (children) often going to be what you focus on most,” O’Connor said. “Autism is no different. If you can identify and really get a plan to how you approach the problem, it makes the process so much easier.”

Autism and Columbia’s business environment

One of the Thompson Center’s newer initiatives trains local businesses to accommodate those on the spectrum. In July, the center took a big step when it launched its Autism Friendly Business program. Four businesses have completed the program’s training — MU Athletics Department , KCOU, Focus on Health Chiropractic and The Broadway Hotel.

For businesses, autism-friendly practices train employees to help patrons with autism by creating courses of action for various situations. Although O’Connor and Laakman, both involved in training and outreach, believe such efforts have been successful, they know the program still a work in progress.

“As time goes on, you’re probably going to see more demand for this type of training,” O’Connor said. “We’ll also have to take a look at the methods we use as we learn more about autism.”

The Broadway, a DoubleTree hotel owned by Hilton downtown, completed the training in October. Although Chesterfield Hotels, its parent chain, owns other hotels throughout Missouri, it chose Columbia as an autism-friendly location because of medical opportunities and progressive approaches.

“It’s a city that really keeps up from a medical and disability standpoint,” Chesterfield Hotels General Manager Bob McDonald said. “There are so many hospitals and people here who can give you the opportunities you need to this.

“It’s also a community that’s forgiving and gravitates toward sensible people, which is what you need to make this work.”

Under the Thompson Center’s training guidelines, The Broadway has taught its staff members to accommodate people with autism and their families. This includes suggesting locations for visitors who are unfamiliar with the city or looking for specific social environments.

Employees know that certain rooms and areas throughout the hotel are better suited to meet the needs of those with autism. Noise might be an issue, for example.

“If a parent says they have a child with autism that could be at risk of a tantrum or might be uncomfortable, the staff is able to accommodate and suggest a different room,” McDonald said.

In hotels, where it’s easy to find privacy and develop a staff that can help people seeking a particular environment, the task may not be difficult. In larger environments, such as sports venues, for example, that’s not necessarily the case. Football and basketball games have thousands of people concentrated in a large, rowdy crowd, a setting where people on the spectrum may not feel comfortable.

In early October, the athletics program at MU announced a business partnership with the Thompson Center to bring autism-friendly practices to Mizzou Arena for the 2015-16 men’s and women’s basketball seasons.

The objective is to prepare those with autism for the arena’s atmosphere on game days. As does The Broadway, the arena offers tote bags to help those with autism feel more comfortable. Among the items are earbuds and a three-ring booklet that explains where to go for assistance, what happens during games and when to expect loud noises.

“There’s a lot that can catch people by surprise at a basketball game, and our goal is to make sure that nobody with autism feels like they’re discriminated against for any reason,” MU Associate Director of Event Management Krissy Ellis said.

“If we can take places with so much commotion and turn them into positive places for people with autism, there’s really no place that can’t be done.”

That change is something many autism awareness activists hope to bring to other businesses in Columbia. Al Eberhard, a former Missouri basketball player who is now on the Thompson Center Foundation Board, said the center hopes to engage more local businesses.

“When a place or atmosphere or something else you love takes on added meaning like that, it’s special,” Eberhard said. “Everyone should be able to enjoy those games, but that’s harder for people with autism sometimes. This can really be the start of something.”

An aware and growing community

Other factors have helped Columbia become a haven for those on the spectrum. The Columbia Public Schools has taken a step forward, for example, by giving its students with autism a better chance to succeed.

Lukin Murphy, an autism support specialist for Columbia Public Schools, said the district has more than 100 students with autism. The district offers classrooms designed for middle-school students who have autism-related communicative skills and students who have a combination of autism and other learning disabilities.

“I’ve done autism work in tons of different cities, five different states and even internationally in India and Bulgaria, and none of them compare to here,” Murphy said. “In terms of education, this is the best and most well-rounded support system I’ve been around.”

Elsewhere, the city’s demographic composition has also played a major role in developing its newfound reputation as an autism-friendly community. With at least 35,000 college students living in the community, Columbia’s median age (27.2 years) is nearly 11 years younger than the state average (38.1 years).

Since many autism awareness efforts and cultural advances have taken place within the past 15 years or so, younger generations are growing up with a stronger grasp of what autism is and what they can do to support those on the spectrum.

“I think college students and other young people, they’re really learning to understand things more and be more open about them,” Laakman said. “That’s not only true with autism, but it’s also true with depression and mental illness. It’s a benefit that comes with being in a place where people are younger.”

One of the next frontiers in Columbia’s quest for an autism-friendly atmosphere could be the city’s involvement.

Although O’Connor said Columbia has worked well with organizations such as Special Olympics and has emphasized autism programs through Boone County’s family resources and case management opportunities, she feels more can be done to help the city accommodate those on the spectrum.

“That’s probably our next step, it’s working with the city closer and helping Columbia to become even more inclusive than it already is,” O’Connor said. “We’re learning more and more about autism every day, and we owe it to people with autism to help them in any way we can.”

Thompson Center Santa visits bring Christmas magic to children with autism

By Adrienne Cornwall

COLUMBIA, Mo. (Dec. 16, 2015) – When it came time for Averie Gomel to decide where to bring her family for a visit with Santa, there was no question that she would bring son Roman Rassmann, 6, and daughter Ivy Dupree, 2, back for a second year to the Thompson Center, where Roman receives care for his autism spectrum disorder.

“He went home last year beaming and told everyone about it,” Gomel said. “There’s no downside.”

Twenty-nine children from 16 families joined Santa and his helper, Jovie, for private visits with Santa, who brought them each a gift from their wish list, coordinated ahead of time by Thompson Center Development Coordinator Miriam Cullimore.

“Our goal is to give families that special experience that lots of families get to have at the holidays but that our families often struggle to participate in,” Cullimore said.

Dakota Reyes, a 10-year-old girl from Fulton, received a new book about a Santa’s North Pole neighbor: a polar bear, currently her favorite kind of animal.

Rather than the long lines and very quick transitions at retail locations they’ve visited, Dakota’s parents, Steve and Corrie Reyes, said the private visit makes for a more meaningful experience for their daughter.

“She just gets overwhelmed with everything else going on, and she starts to freak out sometimes,” Corrie said. “Then, other people don’t know what to do.”

Since the children are familiar with the environment at the center and many of the staff who volunteer for Santa’s two-day stop in Columbia, the whole family can relax.

“It helps that she had an appointment in November, so she’s been here recently,” said Denise Hayworth, whose daughter, Samantha, brought her wish list to Santa. Samantha had taken the time to write it out on her own by hand to show him while Thompson Center nurse Tammy Hickman took portraits for the family to take home.

Spreading the Christmas magic is the work of Thompson Foundation Board member Lora Hinkel, who plays Jovie the Elf, while her dad, Vince Eversgerd, plays Santa.

Hinkel knows firsthand how much it means to be able to participate in these kinds of holiday traditions. Her older son, Blake, has autism, and the long waits and sensory overload of a typical Santa visit have been too much for him to handle since he was very young.

“I enjoy seeing the parents’ reactions as much as the kids’ reactions,” Hinkel said. “It’s one of my favorite things to do the entire season.”

Hinkel, a speech-language pathologist in Columbia, also helps the children with their communication needs, including sign language and using their electronic communication devices to tell Santa what they want for Christmas.

“This is special for both of us,” said Eversgerd, who has played St. Nick for three years now at the center. “The first year, I had parents cry because they’ve never gotten to do this with their children before. There’s nothing like it.”

Roman, a shoe-in for the nice list who had received a letter from Santa the day before, made sure to bring a handmade Christmas card in return to deliver by hand at his visit Sunday. He left beaming once again this year, ready to tackle assembling his new Lego pirate set.

“He has sensory issues and is shy. This allows him to be more at ease with the situation rather than being thrown into it,” Gomel said. “It’s so much more personal.”

Photos by Mikala

Cheak-Zamora honored by public health group

Congratulations to Dr. Nancy Cheak-Zamora for receiving the Young Professional Award from the Maternal & Child Health section of the American Public Health Association (APHA).

The award honors professionals age 40 or younger who have made a significant contribution to the field of maternal and child health. Further, the recipient must show potential for making a sustained and meaningful impact on the field in years to come.

Dr. Cheak-Zamora will receive the award at the APHA annual conference on Nov. 2, and the following day she will present her recent Photovoice research project which she conducted at the Thompson Center. Nancy utilized Photovoice methods to engage young adults with autism in documenting and talking about their transition to adulthood.

The project used a series of photographs taken by the young adults, interviews, group activities and a public exhibit of the photographs to provide insight on their perceptions of adulthood, their goals and the services they need to succeed.

Miles publishes review of new uses for existing genetic tests

Thompson Center researcher, geneticist and pediatrician Dr. Judith Miles recently published an invited editorial in the Journal of the American Medical Association reviewing a study of molecular diagnostic tests in children with complex autism.

The techniques used in the study, chromosomal microarray analysis and whole-exome sequencing, allowed researchers at the University of Toronto to attribute complex autism symptoms of participating children with a known genetic mutation in 37.4 percent of cases. Less severe cases of autism, classified as “essential” autism, were only linked to a genetic mutation in 4.2 percent of cases.

Miles said the use of these genetic tests in a new application to autism diagnosis may be as much as seven times more informative than traditional chromosomal testing.

“Foremost, the data indicates that physicians responsible for diagnosing children with autism spectrum disorder should arrange genetic evaluations using techniques that have the best chance of determining a conclusive diagnosis,” Miles said in the editorial. “It is undeniable that precise diagnoses pave the way to better medical care, improved surveillance, better functional outcomes and informed genetic counseling, often with the possibility of prenatal or preimplantation diagnosis.

Practicing the art of making friends in Art for Autism program

By Marta Witko

For children with autism, mastering the art of communication is a work in progress, but the Thompson Center’s Art for Autism program provides another outlet of self-expression over the program’s three-week sessions each fall and spring.

Last week, a new group of children completed several art projects, and formed friendships, with the help of Access Arts instructors and volunteers from the Thompson Center.

“I’ve really enjoyed seeing the transformation from when the kids first met, to where they are now,” said Caroline Painter, one of the instructors. “They really went from doing their own thing to having in-depth conversations, mostly about Minecraft, and they bonded over a mutual love of art and video games.”

Instructors guided the children through projects such as turkey masks with watercolor leaves for the younger group and ceramic work for the older kids, who made pizza plates and napkin holders.

Joey Ryder, 7, who had never taken an art class before, has always been very creative and had a passion for art, said his mother, Dawn Ryder.

“It’s given Joey a great outlet, and it’s been very therapeutic for him to unleash his creative energy into art,” Ryder said. “He’s always displayed creativity and since art is something he really loves, he’s looking forward to the next session in the spring.”

Art for Autism also offers a preview of classes available at Access Arts, a nonprofit organization whose mission is to provide creative learning experiences for everyone. Access Arts hosts various workshops throughout the year and offers weekly classes for all ages and abilities.

At the conclusion of each session, participants typically donate one piece of art that will be sold or auctioned at events and traveling exhibits throughout the year to support the program.

“Art for Autism is an opportunity to give kids with autism a fun, inclusive experience in a creative exercise,” said Thompson Center Development Coordinator Miriam Cullimore, who organizes the event. “We make it happen each semester with the generosity of our partner Access Arts and community supporters.”

Adrienne Cornwall contributed to this story. Photos by Marta Witko.

Visit our Events page for opportunities to view and purchase works in the traveling Art for Autism exhibit.

Children with autism dive into new adaptive swim program

By Marta Witko

COLUMBIA, Mo. (Nov. 17, 2015) – Occupational therapy students at the University of Missouri School of Health Professions created a specialized swim program for children with autism spectrum disorders to enhance water safety and learn a new form of exercise while making new friends.

Swimming and Water Instruction Modification (SWIM) incorporates autism training strategies for children ages 4 to 18, including two instructors for each child enrolled. The program was initially launched in July and received tremendous positive feedback from the families of the six children who participated. Those children were invited back in October for four additional lessons, and organizers are considering adding more lessons in the spring.

The program is structured so that each group of children will continue the program and build on the skills they’ve learned in previous lessons, similar to that of a traditional swim lesson, but with specialized attention to cater to specific needs. In just four weeks, parents and instructors have already seen a difference.

“The feedback that we’ve gotten from parents is that their child was not successful in a busy environment and would benefit from specialized attention by trained instructors who understand the training strategies for children with autism,” said Brittney Stevenson, an occupational therapist at the Thompson Center who supervised the student swim instructors with colleague Lea Ann Lowery, an associate clinical professor in the MU School of Health Professions.

Each lesson is 30 minutes long and led by six occupational therapy students with three children per lesson.

Parents are encouraged to cheer on and even videotape their child to help track progress and encourage learning through video modeling. The goal is for children to eventually be able to integrate the skills they’ve learned into community swim lessons.

Learning to swim is a critical safety skill for children with autism because they are frequently drawn to bodies of water, Stevenson said. Knowing how to swim can be a lifesaver, particularly if the child encounters water after wandering away from a safe environment, as half of all children with autism do.

In addition to safety, the SWIM program incorporates social skills development into the routine. Lessons begins with a “hello song” personalized with each child’s name that allows them to practice social skills, followed by 20 minutes of personalized instruction on swimming skills and a “goodbye song” as a calming way to signal the end of the lesson.

“Children gain more than swim skills when they participate in SWIM; they will have an increase in self-esteem along with social skills,” said Gabby Heckman, an occupational therapy student who helped launch the program. “Our hope is that these skills will carry over into their daily occupations and help them achieve goals outside of the pool. The opportunities are endless.”

Thompson Center celebrates 10 years in autism with eyes on the future

By Marta Witko and Adrienne Cornwall

COLUMBIA, Mo. (October 8, 2015) – Kicking off the evening with a ceremonial ribbon-cutting, Thompson Center founders Bill and Nancy Thompson joined the center’s providers, staff and special guests at The Roof at The Broadway hotel in downtown Columbia to celebrate 10 years of helping Missouri children with autism and other neurodevelopmental disorders.

Since its opening in 2005, the Thompson Center has expanded its clinical, research and training capacity. From 550 visits in its first year to more than 9,000 in 2015, the center serves patients throughout the U.S. while also training health providers, teachers and even businesses in best practices for supporting individuals with autism and conducting world-class research.

“We’ve come so far in 10 years,” said Thompson Center Executive Director Dr. Stephen Kanne. “We’re excited to see what the next 10 years will bring for the Thompson Center and for families affected by autism.”

The near future for the Thompson Center includes a new national genetics research project that will launch later this year and a partnership with Mizzou Athletics to bring autism friendly business practices to Mizzou Arena for the upcoming basketball season.

The research project, funded by the Simons Foundation Autism Research Initiative, selected the Thompson Center as one of three pilot sites across the country to participate in a national genetic autism project that aims to recruit 50,000 individuals with autism and their families for a long-term research cohort.

On hand to celebrate these and many other accomplishments were a number of supporters: Thompson Foundation for Autism board members Lora Hinkel, Jack Reis and Al Eberhard, who will be inducted into the Missouri Sports Hall of Fame in November; MU Children’s Hospital Medical Director Dr. Timothy Fete; and School of Health Professions Dean Dr. Kristofer Hagglund.

Members of the MU chapter of Alpha Tau Omega fraternity, who in April fulfilled a pledge to endow a $25,000 patient scholarship fund at the Thompson Center, also turned out to support the center as well as thank Nancy and Bill, an alumnus of the chapter, for their leadership.

The Thompsons also heard from several families in attendance whose children are treated at the center and came out to celebrate the center’s 10th year.

“We just love hearing from families who have been touched by the Thompson Center,” Thompson said. “It really illustrates how our gift 10 years ago is actually an investment that is paying off for families.”

Thompson Center offers new pediatric and autism neuropsychology clinics

By Marta Witko

COLUMBIA, Mo. (Oct. 6, 2015) — Beginning in September, the Thompson Center for Autism and Neurodevelopmental Disorders began offering new pediatric and autism neuropsychology services for children and young adults, providing neuropsychological assessment of additional conditions in children who already have a diagnosis of autism or other neurological condition.

Dr. Michael Mohrland, a pediatric neuropsychologist who joined the Thompson Center in July, will be the primary clinician for these services, which typically includes a four-hour initial visit. A clinical interview, neuropsychological and psychological testing are conducted, followed by an in-person feedback session two weeks later.

Patients and families are provided with a detailed explanation of test results and treatment recommendations to maximize patient functioning and minimize distress. Clinicians will also consult with school personnel and primary care physicians when necessary to assist with coordinated care.

“Having a pediatric neuropsychology clinic at the Thompson Center fulfills a crucial assessment piece integrating medical factors with real-life practical tips for school, parents, and medical providers,” Mohrland said.

Services in the autism neuropsychology clinic include diagnostic assessment for children and youth with a confirmed diagnosis of autism spectrum disorder who have not previously been diagnosed with an intellectual disability and would benefit from an in-depth assessment of their learning skills. Clinical goals include pinpointing specific learning strategies for school and specific interventions for social, communication and behavioral functioning.

The general pediatric neuropsychology clinic offers diagnostic services for children and youth with neurological or medical conditions that may affect central nervous system functioning and how that disorder affects cognitive, emotional and behavioral functioning.

Prospective patients must be referred by a physician or other professional using the universal Thompson Center referral form, which can be found on the Thompson Center website.