My program of research focuses on identifying processes and practices that can be used to support children with autism and their families in living more freely and fully in their communities. I take a strength-based approach to understanding autism and explore how systems can be supported and structured to facilitate positive development. Most autism programming has emerged from a medical model of disability that understands autism as an individual’s pathological deficit that should be treated, and if possible, cured by experts and professionals. In contrast, I understand autism as a common set of characteristics that primarily affect how children learn and think. These differences cause a variety of cognitive and behavioral patterns, and some of these patterns can limit an individual’s ability to meet their goals. Our society is often rigid, and therefore individuals (and families) with autism are sanctioned, stigmatized, and isolated for not fitting in and this exacerbates impairments associated with autism. Through my research, I seek to apply this understanding of autism to develop programs that support children and families in gaining resilience in the face of marginalization.
To advance this objective my research centers along three integrated paths: (1) gaining a better understanding of the lived experiences of children with autism, their families, and support professionals; (2) developing and evaluating programs that are grounded in this understanding; and (3) exploring the effectiveness of online programming. My desire to conduct applied research stems from my years of working as a practitioner with individuals with developmental and intellectual disabilities as well as my interdisciplinary training in human development and family studies.
Understanding Lived Experience
My work in the Father Involvement in Early Intervention lab with Dr. Brent McBride and Dr. Rosa “Amy” Santos is an effort to understand better the experiences of parents with children with disabilities and the professionals who support them. My role on the team has been to lead the development of a needs assessment for early intervention providers and then analyze the qualitative and quantitate results of this assessment. This work is forthcoming from the Journal of Early Intervention. One of the findings from this study is that early intervention providers have a disparity in their perceptions of father involvement in early intervention. While they believe that fathers facilitate positive development in children, they do not see fathers as good targets for engagement in early intervention services. I am now working with the team to develop a professional development program for supporting early intervention providers in engaging fathers. Simultaneously, we are working to adapt the Parents Interacting with Infants (PIWI) program for fathers of children with disabilities and delays.
My dissertation focuses on understanding mealtimes in families where there is a child on the autism spectrum. Mealtimes serve as a context for development, rich with experiences and interactions, which can support family well-being and there is a large body of research supporting this claim. Unfortunately, general research on family mealtimes precludes children with developmental disabilities so much is still unknown about the impact of the family meals for children with autism and their families. The research that has examined the connection between autism, food, or mealtimes has focused on challenges and deficits, not on mealtimes as naturally occurring family processes. These ideas originated as I worked as a project manager with Project DINE for Dr. Barbra Fiese on a study examining how cognitive distraction during mealtimes affects communication and eating patterns.
In my dissertation, I use grounded theory to analyze observational and interview data from families of children with autism during mealtimes in order to build a theory of how families create cohesiveness and connection within the patterns of daily living. For each family, I recorded a mealtime in their home then interviewed one parent and one child with autism about mealtimes (the children are elementary or middle school aged). One of the primary themes I am exploring is the dialectic between expressions of love through control and expressions of love through acceptance. Parents use controlling behavior during the meal as an expression of love to support their children with being successful with the tasks related to the meal. This creates tension, both internal and external, as the mothers simultaneously hold the belief that love is expressed through acceptance of the child for who he or she is. The tension is minimized by balancing control and acceptance. In addition to having a better understanding of the role of mealtimes, I will use this grounded understanding to develop a program based on strategies that parents have found successful. This is in line with the second path which my research centers on: program development and evaluation.
Program Development and Evaluation
For my master thesis, I developed a program for teaching human sexuality to individuals with autism, The Birds and the Bees. It included practitioner training, materials for instruction, and online resources. I delivered this program to over 300 participants throughout the state of Illinois. Program attendees were invited to participate in a study examining the effectiveness of the training in addition to weekly online follow-ups that were delivered via email or Facebook. Participants reported an increase in knowledge seeking behavior, utilizing curriculum, and perceptions of readiness to teach. Although I did not find differences in these outcomes comparing the email and Facebook conditions, individuals in the email condition were more likely to read the messages and find the content useful. The evaluation of The Birds and the Bees was published in Sexuality and Disability.
With Dr. Hedda Meadan-Kaplansky and Dr. Jim Halle in the Department of Special Education at the University of Illinois, I worked on developing an asynchronous version of the Internet-based Parent-implemented Communication Strategies (I-PiCS) program. This is a program for teaching parents of children with very limited language naturalistic strategies for enhancing communication abilities. I helped to develop and build the online modules as well as a knowledge assessment for evaluating their effectiveness. I plan to continue to develop programs that are evidenced-based, responsive to the needs of the community, and overcome implementation challenges. To that end, I am interested in the effectiveness of online programming: the third path in my research program.
Online Program Delivery
Both The Birds and the Bees and I-PiCS have online components. My thinking on online programming has been influenced by the work of Dr. Aaron Ebata and Dr. Robert Hughes. Together, we have published in Family Relations and family life education textbooks as well as presented at the National Council on Family Relations on a model of Online Family Life Education. I applied this model to the I-PiCS program for an article in Teaching Exceptional Children. As I develop and evaluate programs around the needs of children with disabilities, their families, and support professionals, I will continue to examine how to use online technology to reach more people and what is needed to make online programs effective.
Methodologically, I have training in advanced statistics, hierarchical linear modeling, grounded theory, mixed methods, psycho social aspects of survey design, measurement, and program evaluation and have used this training in my research. In the area of program development, the greatest methodological concern may be the establishment of an evidence-based practice. My work explores what evidence means from multiple paradigms and what programming looks like in the absence of a clear evidence base. I am also interested in how to include the voices of individuals with autism in establishing evidence-based practices. With that goal, my dissertation research incorporates interviews with children with autism in an effort to develop strategies for eliciting their thoughts and feelings.
Over the next five years, my research will continue along each of the three paths I have outlined. Specifically, I plan to continue my work on family meals both in terms of exploring the relation between processes and outcomes and in terms of program development. I anticipate that the program I develop will have an online component that can be distributed in parent-to-parent online communities. My research will continue to reflect the interdisciplinary partnerships that have been critical to my graduate training bridging the boundaries of human development, family studies, and special education.