The Kansas Center for Autism Research and Training
(Friday, February 12, 2016 )
The Kansas Center for Autism Research and Training (K-CART) at the University of Kansas is a
new multidisciplinary center that promotes research and training on the causes, nature, and
management of autism spectrum disorders (ASD). Committed to the highest standards of
scientific rigor, K-CART strives to generate new research discoveries to prevent and treat ASD
and to ensure the dissemination of research-based best practices throughout the state and region
by training professionals and paraprofessionals who serve children and adults with autism and
their families.
Since K-CART was launched as an exploratory effort in 2007, families throughout the region
have come forward to express their support of the University of Kansas for taking the lead in
remediating what is arguably the most pervasive and perplexing medical condition of our time.
We Need Answers Now
Recent surveys in the United States suggest that as many as 1 in 150 children will be diagnosed
with an ASD, compared to previous estimates of 4 to 5 per 10,000. This makes autism more
common than pediatric cancer, diabetes, and AIDS combined.
ASD spreads across all racial, ethnic, and socioeconomic groups, and disproportionately affects
boys. ASD includes autistic disorder, pervasive developmental disorder - not otherwise specified
(PDD-NOS, including atypical autism), and Asperger syndrome. While it is unclear whether the
growing number of children diagnosed with ASD is due to an actual increase in the frequency of
the disorder or the result of broadened criteria, a diagnosis of ASD typically means a lifelong
need for services and supports to function within the family and community.
Despite some progress in understanding ASD, too much is unknown. Our research will focus on
insights into the primary neurobehavioral basis for ASD and interventions to prevent and treat
the impact of ASD on individuals and families and our society at large.
The Kansas Center for Autism Research and Training: A Multidisciplinary
Approach
As one of the nation’s leading research and teaching institutions, the University of Kansas brings
a vast network of resources and expertise to support and continually strengthen the work of KCART. KU provides an invigorating research environment for scholars and practitioners
representing more than 100 fields of study – many considered among the top 10 programs
nationally. KU has a long and successful record of research collaboration promoted through
independent, multidisciplinary research centers that focus on common themes.
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K-CART Case Draft 5-05-08
Because of this shared focus, collaborations are widespread across university campuses and
programs. This institutional climate ensures that K-CART will be positioned to launch its
multidisciplinary research and training initiatives efficiently and effectively.
K-CART has already attracted scientists and research-clinicians from both campuses and the
unique urban community-based research center, the Juniper Gardens Children’s Project and the
Life Span Institute at Parsons, which has distinguished itself in developing research-based
human services for underserved parts of Kansas.
K-CART’s leadership includes Vice Provost for Research and Graduate Studies Steven Warren,
Director Debra Kamps, Co-Director Matthew Reese, John Colombo, Jessica Hellings and Linda
Heitzman-Powell. They represent K-CART’s depth and breadth of expertise from cognitive
neuroscience, psychiatry, and behavioral, clinical and developmental psychology.
Within months of its launch in 2007, the initiative attracted more than 40 faculty members from
across the University of Kansas, KUMC and other KU research groups – all with research
interests and clinical practice in ASD in special education, occupational and speech therapy.
Additionally, the group drew two faculty members who are also attorneys with distinguished
histories of representing the interests of families with children with disabilities. Another asset is
KUMC’s Hoglund Brain Imaging Center, a regional resource engaged in activities at the
forefront of neuroscientific endeavor and also a K-CART affiliate.
With 28 current autism-related projects funded through competitive federal, state and private
awards with annual total costs of $9.3 million, the K-CART affiliates’ investigation of ASD
represents a life span approach. Some examples:
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Kathy Ellerbeck – Early identification of infants and toddlers with autism
John Colombo – Early screening for autism in young children using pupil response to
stimuli
Kathleen Baggett – Improving social communication for infants and toddlers with autism
Linda Heitzman-Powell and Matt Reese – Early intensive intervention for toddlers and
young children with autism
Nancy Brady – Developing pre-linguistic and augmentative communication for children
with disabilities and Fragile X
Debra Kamps and Kathy Thiemann – social communication intervention for school-age
children and typically-developing peers
Rachel Freeman – Positive behavior supports for children and adults with challenging
behaviors including autism
Wendy Parent – community and work place supports for young adults with
developmental disabilities
Ann and Rud Turnbull – Improving quality of life and parent-professional partnerships
for children and adults with disabilities and their families
At the beginning of 2008, a new collaboration of researchers brought together by the initiative
successfully won a grant to develop the statewide training for individuals who will provide
services for children with autism through the new Kansas pilot autism Medicaid waiver program.
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K-CART Case Draft 5-05-08
Several members are contributing their time for this effort. The project will train and retrain a
cadre of Kansas service providers to new level of professionalism grounded in evidence-based
practice developed at the University of Kansas that will improve the quality of lives of children,
families and communities they serve.
Additionally, the Kansas City Young Matrons, a philanthropic organization of more than 300
women, selected the KU Autism initiative as its project of the year to receive a portion of its
proceeds of its annual charity ball, expected to be $70,000 to $90,000. K-CART researchers
Kamps and colleagues are producing a three-DVD set for parents, siblings and peers and teens
and young adults addressing such issues as teaching early communication skills, social
communication, emotions, relationships and problem-solving.
These early successes and the base strength of the group clearly demonstrate the potential of a
permanent multidisciplinary center to forge new scientific alliances through increased awareness,
focus and commitment.
K-CART will make it possible for KU to build important new capacity for research, training, and
responsiveness to needs of persons with ASD in our community and across the state. K-CART
will enable a collaboration of university and community partners to grow the number of research
dollars received, which translates to new knowledge and better services. Improved training will
increase the number of highly qualified service providers; growing clinical services based at the
university increases both research and training and dramatically improves the quality of life for
children and youth with ASD and their families and communities.
Center Priorities and Impact
Researching the Neurobehavioral Basis of Autism
Impact: Behavioral and cognitive neuroscience research holds the greatest potential for
uncovering the causes of ASD, ultimately leading to preventing the disorder.
Identifying the primary neural or cognitive basis for ASD remains elusive. The greatest promise
for major scientific breakthroughs likely rests with the behavioral and cognitive neuroscience of
ASD. A renowned and dedicated group of University of Kansas researchers will come together
through K-CART to advance science in this crucial area.
Research to Improve the Management of ASD
Impact: New work by K-CART will include larger clinical trials and interdisciplinary
collaborations to greatly expand knowledge and develop proven strategies to manage ADS.
A second priority area of research concerns the careful and rigorous evaluation of interventions
to improve the outcomes of individuals with ASD and families. Partners for the autism initiative
have conducted important research to address the core features of autism such as socialcommunication and behavioral interventions, language disorders in children and the genetics of
language acquisition and augmentative communication systems.
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K-CART Case Draft 5-05-08
Training for Early Detection of ASD
Impact: More children will be identified and linked to appropriate services at a time when we can
have the greatest effect on their development
It is critical to detect ASD as early as possible, optimally by the age of 12-18 months. During the
last decade, multiple screening tools for ASD were developed with little emphasis on how to
implement or validate them in real-world situations. Training individuals, especially
pediatricians, to implement, administer, and interpret screening tools will further early detection
and earlier use of strategies to manage ASD.
Training to Deliver Interventions for Managing ASD
Impact: Providers across the state and region who are delivering services will be equipped to use
the most recent empirically-validated treatments for individuals with ASD.
An important mission of K-CART is to facilitate the training of professionals who will be able to
deliver evidence-based practices to manage ASD. Training will focus on interventions to
improve communication, social skills, and adaptive functions in individuals with ASD. In
addition, training will encompass skills across the life span for persons with ASD.
Building the Capacity for Autism and Developmental Disabilities Clinical Services
Impact: Students graduating from Kansas colleges and universities will be equipped to pose and
answer important research questions related to ASD and deliver appropriate empirically-based
services to this population. These students will also have the leadership capabilities to change
systems of care and education and meet critical needs in under served areas in a family-centered,
culturally competent fashion
Important to the Autism initiative is the ability to mentor young investigators and to increase the
numbers of highly trained professionals to serve persons with ASD and their families. KUMC’s
Center for Child Health and Development (CCHD) is a primary interdisciplinary training site for
graduate students. It currently has 15 long-term trainees who spend at least a year in the clinic
and another 90-100 students who rotate through for training in various developmental disabilities
including autism. K-CART includes CCHD as a major partner in building capacity throughout
the state, including clinical services for children and families from diverse cultural backgrounds
and families who do not speak English.
Finally, mothers, fathers, siblings, and children and youth with Autism will benefit from the KCART research and training as will as extended family, community members, school district
personnel and service providers. We expect these benefits to extend across the life span from
early screening and early intervention to school-based services to future supported employment
and independent living.
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K-CART Case Draft 5-05-08
Benefits for Families
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Early diagnostic services
Clinical services for occupational therapy, physical therapy, speech and language
intervention
Increased clinical/psychological services for children/youth with challenging behaviors
Information on regional resources available to families
Access to professionals with expertise in ASD
Access to parent networks and parent support groups
Training in evidence-based practices for serving children and youth with ASD
Research opportunities for children and youth with ASD and families
Benefits for Practitioners and Service Providers
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Access to professionals with expertise in ASD
Training in evidence-based practices for persons serving children and youth with ASD
Access to a referral network of services including state agencies and autism-specific
services
Access to clinical services through K-CART and KUMC-affiliated clinics
Connectivity and information sharing across agencies, schools, and families through KCART
Research opportunities for schools, mental health providers, services providers working
with children with ASD and families
Benefits for the State, Region, and the University
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Increased diagnostic and clinical services reaching larger geographical areas
Increased collaboration among University partners leading to innovative research
Increased research dollars for the Kansas and regional communities
Increased training events and consistent training in evidence-based practices
Collaboration between K-CART and autism centers in other states
Increased participation in state, bi-state, and regional initiatives related to persons
with ASD
Increased recruitment potential for young scientists to expand KU research and
national significance for K-CART
The Success of The Kansas Center for Autism Research and Training
Leadership of the University of Kansas and the KU Medical Center has committed $1 million in
operating funds as seed support for the first five years of operation. In addition, the KU Life
Span Institute has recently received a bequest of approximately $1 million dollars from the estate
of Wanda and Tom Pyle. As a challenge to the surrounding community, the director of the Life
Span Institute has assigned this new endowment to support K-CART under the condition that
members of our community come forward with additional funding.
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K-CART Case Draft 5-05-08
K-CART will have an annual budget of approximately $450,000. This funding will: provide core
infrastructure and support for the center; provide seed money to build research capacity to
increase submissions of innovative research grants; support staff to conduct training for families
and service providers; and, support clinical staff to provide on-site and off-site child and parent
support on a local and regional level. These funds are in addition to and do not replace the
hundreds of thousands of dollars in annual salaries and support already provided by KU for the
members of K-CART.
Specific gifts are needed to accomplish the following goals:
Regional Resource Center
A permanently funded Resource Center would link families to information to access screening,
diagnostic, and treatment services to improve outcomes for children and youth with autism and is
the among the top priorities of families in the region. At the KU Edwards campus in Overland
Park, Kansas, an entire level 12,000 square feet of unfinished space is available. The center
could have its own entrance and parking. Such a center would be a concrete example of KU’s
commitment to families that is sorely needed and a touchstone for the success of the larger effort.
Clinical Facilities
There is a crying need for additional clinical space. The Center for Child Health and
Development at the Medical Center is the location for KU’s clinical services for children with
autism. KU has additional new space on Shawnee Mission Parkway that could be converted for
additional clinical services with better access and support for parents from around the region.
Faculty and Staff Support
Additional needs include post-doctoral and graduate student fellowships, and support for clinical
staff to grow the technical assistance capabilities to broaden responsiveness to the community
and state. The gift of endowed faculty positions would further increase research and training.
A Beacon of Hope
We urge you to join with us in ensuring the success of the Kansas Center for Autism Research
and Training. This effort can and will positively affect the lives of all those touched by autism
spectrum disorder through increased dissemination of research-based best practices for early
identification, early intervention, social skills training and transition to adulthood. Indeed, all of
us will benefit from the success of this center by helping to ameliorate the cost of this disorder to
our society in real terms and in the quality and productivity of the lives of many of our citizens.
Help us make the KU Center for Autism Research and Training into a beacon of hope for the
many thousands of Kansans and others in the surrounding region who struggle with the ripple
effects of this complex, lifelong disorder.
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K-CART Case Draft 5-05-08