As a volunteer at an Olathe, Kan., nursing home, 19-year-old Isaac Swindler enjoyed helping people by escorting residents to the chapel, bringing them meals, and assisting with laundry. But when the nursing home was forced to limit the number of visitors to the facility in response to the spread of COVID-19, Isaac became one of the millions of Americans to lose his position – and his routine.
That sudden change to daily life can be difficult for anyone, but for someone like Isaac, who has autism spectrum disorder, it can be an extraordinary disruption, said Issac’s father, Sean Swindler. Individuals with autism often struggle with rapid, unpredictable changes to their routine, he said.
“Social distancing needs to happen to keep everybody safe, and we are absolutely in support of it,” Sean said. “However, it really is a challenge for kids with autism and their families because they're losing so many opportunities for interaction that can't be reproduced at home.”
In addition to the experience of being a parent of a child with autism, Sean is the director of community program development for the Kansas Center for Autism Research and Training, or K-CART, a research center at the Life Span Institute. The center has been fielding questions about how to adjust as children’s access to opportunities is completely upended by stay-at-home orders, the closure of businesses, and converting school classrooms to online instruction. The center has created a list of COVID-19 resources for families.
We reached out to Associate Professor Rene Jamison, a licensed psychologist for the Center for Child Health and Development in Pediatrics at the KU Medical Center and an investigator at K-CART, for tips for parents who are navigating these changes. She and other researchers will offer a webinar for families on April 10, “Managing the Coronavirus as an Individual with ASD or Caregiver.” She also provided the following guidance, which has been edited and condensed:
How can I help my child adjust to change?
It will be important for parents and families to prioritize what’s most important to keep up with. I know a lot of our families are really worried about the long days at home together, lack of structure and missing their educational opportunities. Some families are experiencing financial stress or a need for childcare. Priorities will be different for each family.
Adjusting to these changes will be easier if you can identify tasks to accomplish in smaller chunks of the day, taking the to do list in stride. For example, when everyone is awake, you can establish that everyone will make their bed, brush their teeth and then cook breakfast.
Identify new opportunities and the positive changes that result from sheltering at home. Try to spend more time together and connect with children. Focus on those basic needs.
How do I help my child maintain social skills during this time?
There is no doubt that kids with autism are not spending as much time engaged in social interaction or extracurricular activities. During this time, parents can model interaction and connection with their friends and family, incorporating their kids into this as well. That way you're all engaged together.
For some, virtual classrooms or video calling friends can be overwhelming, so just circle back to prioritizing what the child gets the most out of or enjoys. Find out how other kids or teens their age are connecting in order to get ideas and create opportunities around interests or existing friends.
How do I help my child establish a routine?
Parents and caregivers can identify priorities based on family and child needs. If possible, engage the child in creating a schedule and consider what will work best based on schedules of other family members as well. It doesn’t have to mirror the school day; academics or learning can be mixed in with time for connection and provide space for children to choose what they want to do. For example, this might look like writing and reading time in the mornings, then cooking lunch together and a walk outside.
It doesn’t need to be overly specific or scheduled to the minute, but should give enough structure so that children can see what's coming up that day.
How do I assist my child when preferred choices and activities are not available?
It’s frustrating for kids to not be able to do what they want right now. So while they may not be able to engage in preferred activities in the community, you can build scenarios at home that give them choices. Whether it’s setting up a pretend store with stuff from around the house or letting them choose what to eat for dinner some night, addressing and validating their frustration should be at the core of these experiences.
Keeping kids engaged by asking them what they might need, or checking in on them throughout the day with affirmations or physical touch will ease this transition. If possible, create activities for children or get out materials or toys to use within certain settings or time of day. Small groupings of tasks and activities will help things move slowly.
Most importantly, take things slowly and care for each other during this time. Daily living skills and leisure activities can be equally important when children might not be working on academic-driven skills. Parents and caregivers can look for opportunities that allow the family to learn together and to incorporate the child’s interests.
Register for the April 10 webinar here.
Apprehension is expected before a traveler boards a flight, whether it’s anxiety about airline safety or worrying about a delayed flight.
Yet for people who depend on wheelchairs to move through the world, the possibility of damage to their chairs poses the biggest stressor of them all. Wheelchairs aren’t just an object or item to be checked like a suitcase for a flight; they are an extension of the user and a vital part of their daily lives.
Once a user has boarded a plane, their wheelchair usually is loaded into the baggage area of the plane. The chairs may be disassembled or damaged in the process. Power chairs can be expensive; custom machines can cost upwards of $20,000.
Dot Nary, assistant research professor at the Life Span Institute’s Research and Training Center on Independent Living (RTC), is among many people who have experienced the challenges of mishandled wheelchairs.
“Once we went to Washington D.C., and the joystick on a person’s power chair was just totally bent over,” Nary said. “The more severely disabled you are, the more you need a custom chair, so this person’s replacement chair didn’t fit her and she was basically confined to her hotel room the whole time.”
Nary has seen her own chair and those belonging to colleagues dismantled and loaded onto the plane piece by piece with no labels on the parts. Upon arrival at one destination, Nary carefully checked her chair and realized her colleague’s chair had been put together with Nary’s wheels.
“Wheelchair users will never have equal opportunity to participate in travel for work, recreation and other purposes if they have to risk their mobility due to airline negligence,” Nary said.
U.S. Senator Tammy Duckworth (D-IL), whose own chairs have been damaged by airlines, spearheaded legislation that took effect in December 2018 that required airlines to track how many wheelchairs were damaged, lost or delayed. A veteran and double amputee, Duckworth understands the problems that wheelchair users face, said Jean Hall, director of the Institute for Health and Disability Policy Studies at the Life Span Institute.
“She knows all too well the myriad problems with air travel,” Hall said. “If she hadn’t called attention to it, I doubt many people in power would really care.”
The legislation led to a recent report from the U.S. Department of Transportation that highlighted just how nerve-racking flying can be for wheelchair users. Roughly 7,700 wheelchairs were mishandled from January to September in 2019, averaging out to 29 wheelchairs per day.
Ranita Wilks, an advisory board member at the RTC, said her brand-new manual chair was damaged when the airline deconstructed the chair for transport. The footrest, left wheel and main frame were all damaged.
“My four-day trip to Washington, D.C., was spent on the phone with Global Repair Group trying to coordinate repairs to my chair,” she said. “While there, they sent a repair company to my hotel room which informed me they couldn’t repair the wheelchair.” The damage ultimately took three months to fix.
Nary said such experiences pose an issue to equality in terms of travel and employment. Some people may opt to avoid airline travel altogether because of their concerns for their mobility. But without travel, an individual may miss out on networking, research, education or other opportunities, Nary said. For a population that experiences high unemployment – 65% percent of individuals with disabilities are unemployed – that is a critical issue for a person’s career, and their lifestyle.
“Air travel is necessary for people with disabilities to be able to work and play in the same ways that people without disabilities do,” Hall said. “Yet, existing policies to assure equal access to air travel are, as shown, largely ineffective.”
At the Research & Training Center on Independent Living, researchers work to enhance independent living initiatives for individuals with disabilities. For airline travel, the center developed a fact sheet for individuals to know their rights under the Air Carrier Access Act in case an issue arises.
“One important step in making change is empowering people with disabilities to know their rights and speak up when airlines do not meet the spirit and intent of the law.” Hall said. “We are also committed to giving a voice to people with disabilities through our research so that barriers like this one continue to get the attention they deserve.”
Story by Grant Heiman
Illustration by Elizabeth Newell
A pioneering research project at KU may one day give voice to individuals robbed of their speech by neuromuscular diseases such as ALS, also known as Lou Gehrig’s disease.
Led by Jonathan Brumberg, the project is an attempt to use technology to bridge the gap between people who know how to speak, but cannot move the jaw, lips and tongue needed to produce that speech.
To get there, Brumberg, assistant professor of speech-language-hearing, and his team are recruiting with people diagnosed with disorders such as ALS or brain-stem stroke with locked-in syndrome to study what parts of the brain are involved in speaking. The research will then use those signals to control a “virtual” vocal tract computer simulation. This would allow someone to control the jaw, lips and tongue of a computerized vocal tract in order to create speech.
In Brumberg’s laboratory, study participants wear an electrode cap while they imagine producing speech. This cap, which looks like a swim cap, has 64 electrodes in it that measure brain activity. The cap and electrodes help identify what parts of the brain are being used when participants, who cannot talk or have difficulty talking, are asked to imagine creating speech.
"To start the training, we work with letter combinations such as 'ama' and 'ana,'" Brumberg said. "This is similar to 'b' and 'd' babbling that babies do except that 'm' and 'n' are nasalized versions. Then as participants get good at the task, they'll switch to 'amu' and 'ani.' The 'u' uses the lips, like 'm' does, and 'i' uses the front of the tongue like 'n' does."
The overarching goal of this work is to allow people to communicate using the virtual vocal tract at a conversational speed, but Brumberg says that would be very far in the future. It would take months or even years to teach the patients how to use this technology in order to effectively communicate. Right now, he and his team are focused on producing simple consonants and vowels.
One of the rewarding aspects of the research, said Brumberg, is working with the study participants. The participants donate eight weeks of their time coming to over fifteen sessions with Brumberg and his team. The average life span of someone diagnosed with ALS is five years.
“They are all enthusiastic,” Brumberg said. “For some of them, they have a disease for which there is no cure, and they know that, but this is something they can be a part of. Being a part of it now actually could make a difference later.”
Story by Maddie Van Nortwick
Illustration by Elizabeth Newell
The child in the chair looks like she’s preparing to play a video game. She leans toward the monitor in a darkened room, the dim light of the screen illuminating her face. A dot appears on screen. But instead of zapping the dot with a game controller, she tracks its movement only with her eyes. Throughout the test, a camera mounted to the monitor records the movement in fine detail: the pace, the direction, the focus.
This test is one of several conducted at the Brain and Behavior Laboratory directed by Matt Mosconi, who also leads the Kansas Center for Autism Research and Training at KU. The goal of the work is to better understand the motor problems experienced by individuals with autism spectrum disorder and to determine their bases in the brain. These motor problems include not only repetitive behaviors such as hand flapping and rocking, but also challenges with fine and gross motor skills such as walking, eating, and lifting and holding objects.
The studies have the long-term potential to teach us about the causes of both motor and related behavioral issues in autism spectrum disorder and to develop more objective, biologically based markers for developing effective treatments.
Now Mosconi, together with a team of investigators at KU and KU Medical Center, are recruiting research participants -- both those diagnosed with autism spectrum disorder, and those who do not have an autism spectrum disorder, who will serve as controls. The research is part of a $2.3 million grant from the National Institutes of Health that has been underway for two years.
In addition to the eye movement test, participants complete simple tests of movement, thinking, and brain function. Testing occurs at both at Dr. Mosconi’s laboratory off of KU’s main campus in Lawrence and at the Hoglund Brain Imaging Center at the KU Medical Center. Dr. Mosconi’s team will help coordinate each visit and will walk interested individuals through all of the procedures.
If you know an individual diagnosed with autism spectrum disorder between the ages of 10-35 years or an individual without autism spectrum disorder who would like to participate in the research, please reach out to the study coordinators by filling out this form so that a researcher can contact you, or contact them directly with any questions at 785.864.4461 or email@example.com.
We have all had moments when we chose to skip the gym and eat the piece of cake or take the extra helping, even though we knew that we wanted to lose weight.
These decisions are impacted by delay discounting: in this case, the reward of eating fattening food is immediate, while the pay-off of good health and weight maintenance associated with exercising and avoiding unhealthy foods are largely delayed.
Excessive delay discounting can stem from not being able to imagine a future self; If you can’t picture a healthier version of yourself, you may be less likely to work on improving your health today. Lower income, unstable environments, and limited access to resources are associated with greater delay discounting, and over time, this can lead to chronic diseases such as tobacco addiction and obesity.
But what if we could train our memory -- our working memory -- to reduce delay discounting? That question is at the heart of a study funded by a four-year, $2 million grant from the National Institutes of Health to KU and other universities that examines whether strengthening working memory may play a role in reducing delay discounting in medically underserved populations in Baltimore, Maryland.
Working memory is essential for complex brain tasks such as comprehension, learning and reasoning. It contributes to our ability to successfully navigate the world, like how to plan and execute complex activities, to attend to important information and to multi-task.
Richard Yi, director of the Cofrin Logan Center for Addiction Research and Treatment, is the primary architect of the first published results showing the potential of working memory training to reduce delay discounting. Yi leads the study with partners at the University of Maryland-Baltimore, Michigan State University, and the University of Florida.
The ongoing research explores working memory training via computerized training exercises, and whether improving working memory will reduce delay discounting and health-compromising behaviors.
For the first stage of the study, participants at a community drop-in center serving low income and homeless individuals in Baltimore completed up to 15 sessions of a working memory training program. Early findings, published in the Annals of Behavioral Medicine, showed that the program led to improvements in working memory, which in turn, decreased the rate of delay discounting. It also demonstrated the feasibility of implementing working memory training in real-world community settings.
Ultimately, if working memory training can strengthen self-control, it could be applied to chronic conditions such as obesity and addiction.
The study has expanded to a second community center in Baltimore, and expected to expand to a third this winter.
Early diagnosis of neurodevelopment disorders such as autism spectrum disorder is critical to determining effective therapies for a child, and to assure a higher quality of life. But one thing that hinders early diagnosis is our lack of understanding of the biology of autism.
That's one reason Matthew Mosconi focuses his research on understanding the development of behavioral and cognitive issues characteristic of autism spectrum disorder and specifically, identifying the brain mechanisms that lead to them. Additionally, his research examines brain-behavior links related to single gene conditions such as Fragile X Syndrome and other neurodevelopmental disorders.
Mosconi is the director of the Kansas Center for Autism Research and Treatment (K-CART), and director of the Neurobehavioral Development Laboratory, both at the University of Kansas. In this interview, he looks back at his first four years with K-CART and shares his aspirations for autism research at KU.
How would you describe your experience at KU?
A major appeal of KU was the great potential for collaborating with leading behavioral researchers interested in autism spectrum disorder (ASD), and the strong reputation of the Life Span Institute for fostering collaborative and productive research. The reality has exceeded my expectations. People here are very eager to support each other’s work and identify collaborative opportunities. It is difficult to create and maintain an environment that actively promotes high impact research without making investigators compete with each other or experience a shark-tank type of environment – KU and the Life Span Institute have skillfully struck and maintained this balance.
What would you consider to be your biggest accomplishment at the Life Span Institute so far?
I am very proud to be part of multiple teams, including our autism center (K-CART) and my own lab, that have made significant progress towards establishing programs of research that engage families and the community as active participants in cutting-edge science. I know this sounds non-specific, but we have engaged numerous new families, individuals and community partners over the past few years. We also have created environments at the Wakarusa Research Facility and Edwards Campus that help individuals with neurodevelopmental disorders and their families feel welcome and comfortable as they engage in the research process, connect with the many resources available to support them, and then stay engaged with us as we march towards new discoveries. It has taken significant effort to build these relationships and infrastructure, and while we are not finished yet, I am proud of the significant progress we have made along these lines.
What has been one of the most rewarding moments as a researcher?
Multiple trainees have graduated from the lab in my short time here, and they each are thriving in new faculty positions. That is awesome to see, and we have multiple very talented trainees at doctoral and postdoctoral levels that now are heading along equally promising trajectories.
What are your hopes for your future here at KU?
There are multiple long-term projects we are working on both within our autism center and within my lab. At a general level, we are hoping to build key supports that would provide important expertise for researchers at KU so that their studies can incorporate gold-standard assessment approaches and the most reliable and valid diagnostic procedures we have available. We also have multiple new ideas for helping active autism researchers at KU work even more efficiently with each other, and expanding our base. More specifically, we have combined some of the diverse expertise at KU and KUMC to help grow our training programs so that new, talented, junior investigators can rapidly develop their own independent research programs and expand our group’s reach and impact.
Few things are as important in a baby’s first year of life as nutrition – that’s a given. But new research suggests that increasing intake of an omega-3 fatty acid while pregnant has a positive effect on the fetus that continues to affect the child’s development years later.
A team of scientists at the KU Life Span Institute recently authored a study that showed that pregnant women who consumed a supplement of DHA (docosahexaenoic acid), a nutrient added to U.S. infant formulas since 2002, tend to have children with higher fat-free body mass at 5 years old. The findings of the experimental study, presented in the most recent issue of the American Journal of Clinical Nutrition, suggest that improving maternal DHA nutrition has a favorable programming effect on the fetus that influences body composition in early childhood.
“DHA is a nutrient found in the highest concentrations in oily fish such as salmon and tuna, foods many Americans don’t eat a lot of, so they tend to get low intakes,” said Susan Carlson, professor in the Department of Dietetics & Nutrition in the School of Health Professions. “Because U.S. intakes are low and because DHA is highly concentrated in the brain where it increases dramatically in the last trimester of pregnancy and the first two years of life, I have had a long interest in whether more of this nutrient is needed for optimal health during early development. DHA can be delivered to the fetus by increasing maternal intake during pregnancy and to the breast-fed infant by increasing maternal intake during lactation, which increases DHA in mothers’ milk.”
Women with low-risk pregnancies in the Kansas City area were enrolled in the study at KU Medical Center’s Maternal and Child Nutrition and Development Lab between March 2006 and September 2009. Half were randomly assigned to a prenatal DHA supplement of 600 milligrams, and half were given a placebo.
Five years later, children resulting from those pregnancies were tested using the BodPod, which uses air-displacement to determine body fat and fat-free mass. The researchers found the children whose mothers took the DHA supplement during pregnancy had an average of 1.3 pounds more fat-free mass but the same amount of fat at age 5 compared with the placebo group.
“While we don’t know the mechanism for the finding, DHA is an omega-3 fatty acid. We do know that the balance of omega-3 and omega-6 fatty acids early in development can influence the balance of muscle and fat cells,” Carlson said. “The number of muscle fibers is believed to be set by term birth.”
Carlson’s co-author, John Colombo, professor of psychology and director of KU’s Life Span Institute, noted the paper makes two important contributions to the field.
“The first contribution is about the effects of DHA,” he said. “We’ve known for a long time that DHA is associated with improvements in visual, cognitive and behavioral development in early life, but these results suggest that DHA may also have a role in promoting a leaner, healthier growth outcome for children."
The second contribution is more profound, Colombo said:
"If you think about it, our results show the conditions that children experienced during the time that their mothers were pregnant with them are associated with their physical characteristics almost six years later. To me, that’s astonishing — staggering, really. Those of us working in the field of developmental science are seeing results that suggest the prenatal environment and prenatal conditions have meaningful, long-term effects on human development. Quite simply, these results add to that mounting evidence. I think we’ll learn that much more of how we ‘end up’ may be strongly influenced or determined by what happens before we are born.”
The study’s other authors are Brandon Hidaka, Jocelyn Thodosoff, Elizabeth Kerling and Holly Hull of the Department of Dietetics & Nutrition at the University of Kansas Medical Center.
Carlson said the results agreed with another study undertaken in the United Kingdom, and she suggested pregnant women seeking to increase their intake of DHA wouldn’t have to look far to find good sources.
“There are currently many prenatal supplements with DHA,” she said. “They also can increase their intake of oily fish like salmon and tuna.”
At a recent talk, Jan Bulgren referred to an editorial cartoon when she explained the need for new tools to help students and teachers grapple with higher order learning.
In the 2006 cartoon by Steve Kelley, a child approaches his mother, who is reading a newspaper that says “Iraq” across the front.
“Mom, what’s a civil war?” the child asks.
Her answer: “A contradiction in terms.”
“There’s so much to unpack there,” said Bulgren, who is a research professor at the Center for Research on Learning. “Think about everything that has to be discussed to have that conversation, everything that has to be defined, if you’re not going with that simple answer.”
And, there’s a lot of potential for misunderstanding.
Similarly, students and teachers need tools to help them unpack the topics they are trying to understand and achieve the higher order thinking required to make an argument, compare and contrast, and make decisions.
A grant from the National Science Foundation that she is leading aims to help students and their teachers meet next-generation standards for learning. The project focuses on higher order thinking for middle school students and is being implemented districtwide in Santa Clara, California. The grant focuses on learning in general education STEM courses such as earth, life and physical sciences.
The grant brings together two instructional approaches to teach those subject areas. One is a set of tools called Content Enhancement Routines that will support science learning and reasoning. Routines focus on organization and understanding of information, analyzing causation, making comparisons and developing answers to critical questions, as well as argumentation, decision-making and problem-solving collaborative skills.
The second type of instructional approach the grant will fund brings instructional technology in the form of a Google App that supports cloud-based application functions. It will build on the Content Enhancement Routines developed at KU to ensure students have access to graphics, videos, models, and background knowledge. The suite of interventions will be co-designed with educators and experimentally tested. The application is being led by Jose Blackorby at CAST, a Boston-based nonprofit education research and development organization.
“What we heard from students and from teachers is that they needed new ways to explore learning and teaching in today’s world,” Bulgren said.
She noted that students at risk — including students with learning disabilities — needed different tools to achieve the new standards, including Common Core, state and national standards.
As one interim appointment comes to a close, another will begin for John Colombo, Life Span Institute director. Beginning July 1, he will be interim dean of the KU College of Liberal Arts and Sciences at KU.
Colombo, who has been director of the Life Span Institute since 2007, is currently finishing a two year appointment as interim director of the KU Office of Research. Simon Atkinson, Indiana University – Purdue University Indianapolis’ vice chancellor for research, will lead the KU Office of Research as the new vice chancellor for research starting July 1.
Colombo joined KU as a research associate in 1982. In 1988, he joined the faculty of the College of Liberal Arts and Sciences, and he has been a professor in the Department of Psychology since January 2002.
He will continue to be director of the Life Span Institute, where also leads the Intellectual and Developmental Disabilities Research Center, one of only 14 federally designated centers of its kind for disability research.
- Jen Humphrey
Creating a sustainable program and working with partners is a lot like building a piece of furniture from the store IKEA, says Matt Enyart, who leads the Kansas Institute for Positive Behavior Support at the Life Span Institute
“I tell a new team when we’re implementing with them, imagine we’ve gone to IKEA and you’ve picked out something you like,” he said. “We’ve got this box, and we’re going to open it. In this task, our job at KIPBS is to make sure the engineering is right when putting it together. Their job is to make sure it fits what their needs are. It’s critical that we build it together, but they get to decide where they put the emphasis. Everything is data-based — we’re always collecting information. We focus on democratic principles and combine them with implementation science.”
Enyart has been busy building with employees of Johnson County, Kansas, who have been integrating KIPBS tools and strategies across the county’s Department of Corrections, Mental Health Center and Developmental Supports. The KIPBS work aims “to increase both quality of life and the likelihood that youth and adults with challenging behavior related to mental health, substance use, or intellectual or developmental disability will be able to remain successfully in their home, school, work and community settings.”
Johnson County has some unique features that make it a perfect place to pilot countywide positive behavior support. In most Kansas counties, independent nonprofits administer what are known as human services, such as mental health care or assistance for people with intellectual disabilities. However, all of the core human service departments in Johnson County are centrally administered by the county government.
“This central oversight in Johnson County makes implementation of positive behavior support possible countywide,” said Enyart, an investigator with the Beach Center on Disability. “Nowhere else is someone using positive behavior supports across mental health, corrections, substance-use disorder treatment and intellectual-disability services.”
KIPBS trains county staff to acknowledge and reward positive conduct versus being reactive or punitive, according to the KU researcher. For instance, employees in Johnson County’s Department of Corrections Therapeutic Community now are “catching” clients exhibiting good behavior and rewarding them.
This month, county staff and Enyart celebrated the collaboration of the KIPBS and Johnson County. The first 10 employees to have completed Intensive PBS Certification graduated and were honored at a ceremony that highlighted individual experiences with the program.