A roundtable hosted by the Autism Speaks Toddler Treatment Network on April 18, 2013 in Seattle, WA
Michael Siller (Hunter College, CUNY) and Lindee Morgan (Florida State University)
The Autism Speaks Toddler Treatment Network (ASTTN) was founded in 2007 to support a consortium of research sites studying parent-mediated interventions appropriate for children under 24 months of age. Gradually, initial results from this research are starting to be published (Carter, Messinger, Stone, Celimni, Nahmias, & Yoder, et al., 2011; Rogers, Estes, Lord, Vismara, Winter, Fitzpatrick, et al., 2012; Schertz, Odom, Baggett, Sideris, 2013) and presented at scientific meetings and conferences. Arguably the most robust finding from this research is that, on average, parents can be effectively taught to implement a broad range of intervention strategies. However, the emerging evidence also suggests that not all parents acquire the same level of proficiency in using the targeted strategies, maintain the use of these strategies over time, and implement the acquired strategies with sufficient intensity to effect children’s long-term outcomes.
All intervention projects affiliated with the ASTTN aimed to provide clinicians with sufficient flexibility to accommodate families from diverse backgrounds, and to individualize the intervention in ways that promote the parents’ learning and engagement. However, intervention research in autism is only beginning to systematically identify parent or family characteristics that predict parent buy-in or treatment efficacy. Similarly, little is currently known about how to best support parents with different backgrounds, values, goals, concerns, and learning styles. Impetus for this important area may come from research on other high-risk populations, including families who experience socio-economic disadvantages and toddlers who are at high risk for various socio-emotional or behavioral problems. In connection with this year’s meeting of the Society for Research in Child Development (SRCD), the ASTTN hosted a roundtable that brought together a diverse panel of scientists, largely from outside the field of autism research. Each panelist was charged with the tasks of identifying one parent or family characteristic that impacts the implementation of parent-mediated interventions, and suggesting intervention strategies to accommodate the respective families.
Below, you will find a list of strategies that were discussed during this roundtable that may prove helpful in individualizing parent-mediated interventions. Overall, the roundtable conversation illustrated the vast differences in how parents of children with autism describe their child’s thoughts and emotions, respond to the diagnosis, interpret their child’s needs and behaviors, and characterize their own values, needs, and concerns. For example, David Oppenheim described normal variation in the parents’ ability to describe their child’s thoughts, feelings, and behaviors. On the one hand, a parent who is not used to reflecting upon her child’s motives and behaviors may be less suited for interventions that target the parents’ reflection and self-evaluation or rely on video feedback as a teaching strategy. On the other hand, a parent who considers her child’s thoughts and emotions with great nuance may be less engaged in an intervention that is highly structured and relies on traditional behavioral intervention strategies. Other panelists emphasized individual differences in the parents’ understanding of their child’s problem as well as the parents’ motivation for change. Even a parent who is able to accurately describe her child’s behavior may not view these behaviors as a problem in need of professional attention. That is, the parent may have strong emotional reactions or underlying concerns about diagnostic labels, fear a cultural stigma, or have a limited understanding of child development. Other families may face a range of contextual risks (e.g., unemployment, marital transitions, multiple children, lack of education, parental depression) that may interfere with the parents’ readiness for change and ability to engage in a conventional parent-mediated intervention. Specific strategies that may prove helpful for individualizing parent-mediated interventions include:
- Allow easy access by creating interventions that fit into families’ busy lives: Individual or group interventions, choice of home or clinic based, technology-mediated alternatives (e.g., video conferencing, online coaching), flexible scheduling, financial supports as necessary, child care for siblings
- Accommodate different learning styles by presenting information in multiple modalities: Didactic workshops, worksheets with illustrations and visual supports, use of simple language without terminology, take-home reading materials, video models and examples, use of videos to illustrate developmental milestones, provide content in small increments
- Support deep learning and mastery of intervention strategies though practice opportunities: Video feedback, live performance feedback and coaching (e.g., with ‘bug in the ear’), live modeling
- Support generalization: Homework assignments, reminders that can be posted throughout the home (e.g., on the refrigerator) or are sent to the parent’s cell phone, use of technology (e.g., apps) to monitor implementation and/or collect data
- Implementing the intervention within the families’ natural environment: Embedding intervention strategies in natural family routines, take intervention into the community, use the child’s own toys and build on the child’s preferred activities
- Engage families as partners: Build upon families’ strengths, listen, encourage parents to ask questions, elicit the parents’ ideas on what works and what does not work, treat parents as equal, explain concepts in the parents’ language, elicit parental values, goals and concerns, ask parents about their child’s strengths and needs, meet the parents where they are, use a collaborative approach driven by the parents’ priorities, provide encouragement to inspire confidence, provide information based on the parents’ priorities and needs, recognize what parents do well
- Encourage reflection and self-evaluation: Ask reflection questions, review videos of parent-child interaction, use parent journals or diaries
- Create opportunities for parents to network: Play groups, parent support groups, social networking online (e.g., chat rooms, blogs), parent workshops, peer mentors for parents
- Engage the entire family: Engage mothers, fathers, siblings, and the extended family, incorporate family therapy approaches, evaluate interaction involving more than two family members
- Embrace differences on culture and language: Provide bi-cultural and bi-lingual staff, intervention goals should be consistent with family values
- Support the parents emotionally: Anticipate challenging situations and feelings, support the family emotionally throughout the diagnostic process, ensure a ‘good’ diagnostic experience, listen to the parents’ concerns and understand their goals and concerns, help parents to move beyond feelings of guilt and blame
Dunst, C. J. & Trivette, C. M. (2009). Let’s be PALS: An evidence-based approach to professional development. Infants & Young Children, 22(3), 163-175.
Carter, A. S., Messinger, D. S., Stone, W. L., Celimni, S., Nahmias, A. S., & Yoder, P. (2011). A randomized controlled trial of Hanen’s “More Than Words” in toddlers with early autism symptoms. Journal of Child Psychology and Psychiatry, 52(7), 741-52.
Rogers S. J., Estes A., Lord C., Vismara L., Winter J., Fitzpatrick A., Guo M., & Dawson G. (2012). Effects of a brief Early Start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a randomized controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry, 51(10), 1052-65.
Schertz, H. H., Odom, S. L., Baggett, K. M., & Sideris, J. H. (2013). Effects of Joint Attention Mediated Learning for toddlers with autism spectrum disorders: An initial randomized controlled study. Early Childhood Research Quarterly, 28, 249-258.
David Oppenheim, University of Haifa, Israel; Christopher Trentacosta, Wayne State University; Carol Trivette, Orelena Hawks Puckett Institute in Morgantown; Carolyn Webster-Stratton, Washington University; Susan Holloway, University of California at Berkley; Shana Cohen, University of California at Riverside; Alice Carter, University of Massachusetts at Boston.