The Kansas Center for Autism Research and Training

(Monday, June 9, 2008 )

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 K-CART. 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.

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:

  • 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. 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 social-communication and behavioral interventions, language disorders in children and the genetics of language acquisition and augmentative communication systems.

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 K-CART 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.

Benefits for Families

  • 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

  • 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 K-CART
  • Research opportunities for schools, mental health providers, services providers working with children with ASD and families

Benefits for the State, Region, and the University

  • 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.

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 researchand 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.

1

K-CART Case Draft 5-05-08