The average age of diagnosis for children with autism remains around 4 years of age in the United States, with children from historically underserved groups receiving a diagnosis over one year later than White children on average. However, we know that providing intervention as early as possible is critical to outcomes that deliver the best quality of life for children and their families as children with autism become adolescents and adults. Therefore, it is critical that early intervention providers recognize the social communication challenges in infancy and early childhood that may indicate a high likelihood of autism and begin using evidence-based interventions as early as possible, sometimes even before an official diagnosis is made. We now have many developmentally appropriate clinician- and caregiver-implemented intervention strategies to support developmental progress in children who may later receive an autism diagnosis.
Some highly recommended intervention strategies are grounded in applied behavior analysis (ABA), which has a strong evidence-base. However, autistic adults have recently raised strong concerns about the use of ABA-based therapy because of the perception that the focus is on compliance rather than learning and that using ABA strategies can be traumatizing for autistic individuals. Traditional ABA strategies developed based on the principles of learning in the late 1960s, were highly structured and often not developmentally appropriate and even used punishment as part of the teaching. Since those initial efforts at treatment, the field has made substantial progress and developed more appropriate strategies to support learning, especially in toddlers. Current state-of-the-art recommendations for early intervention call for a combination of developmental and behavioral strategies, delivered as early as possible, active involvement of caregivers in intervention, a focus on social communication needs and individualization based on family needs and culture. This is excellent news for early intervention providers who already focus on these areas.
Naturalistic Developmental Behavioral Interventions (NDBIs) are great examples of new approaches to treatment for young children with high likelihood of autism. NDBIs combine strategies from both developmental science and ABA, which involve using the principles of learning to teach new skills in the context of child-driven, developmentally appropriate, play-based interactions. The goal is supporting the child’s development through use of key strategies during child-guided play and daily activities. Common strategies across NDBIs include setting up interactions to maximize a child’s attention, building learning opportunities into child-chosen activities, modeling language and play in reciprocal interactions, and teaching new skills through the prompting, modeling and natural rewards that are related to the activity. NDBI can be clinician-implemented or caregiver-implemented. In fact, most NDBIs specifically prescribe involvement of caregivers and even coaching caregivers directly to use NDBI strategies themselves in the context of their usual daily interactions with their children. Two NDBIs with strong evidence for use with toddlers who have social communication challenges are the Early Start Denver Model (ESDM): https://www.esdm.co and Project Improving Parents As Communication Teachers (Project ImPACT): https://www.project-impact.org. For many years, early intervention providers have asked for guidance on exactly how to include caregivers in their children’s treatment planning and implementation. Both ESDM and Project ImPACT provide much needed clarification and standards for working collaboratively with caregivers, with the primary goal of empowering caregivers as active and equal members of the treatment team.
Despite these substantial advances in treatment approaches, increasing timely access to good quality interventions that work for all families requires flexibility. Many families still do not have access to high quality, modern NDBI models. To address this challenge, ESDM and Project ImPACT have been adapted to make them more feasible for use in real-world community settings. For example, just removing the word “autism” from training materials makes it easier for early intervention providers to begin using autism-specific strategies to support learning before a diagnosis, which increases access to evidence-based early intervention to a more diverse group of children and families. Other adaptations include flexibility in the use of certain strategies, the development of linguistically and culturally responsive translation of caregiver materials, and methods to help caregivers use strategies within daily routines. In addition, incorporating specific training and guidelines for early intervention providers to explicitly use partnership and coaching strategies with families during sessions is key. Developing a genuine, collaborative relationship between early intervention provider and caregiver is challenging and takes time. The process truly cannot be “one-size-fits-all”. To do it effectively, early intervention providers learn to continuously adjust their approach for an individual child and family’s needs to foster a productive partnership. Researchers are currently testing intervention adaptations such as these to ensure they are effective in the community settings for which they are intended.
A recent large study showed that caregivers learn ESDM strategies better when early intervention providers use partnership strategies (such as collaborative goal setting, avoiding the “expert-model” approach, prioritizing the caregiver-child relationship) and coach with reflective practice and mutual planning to support caregiver learning. We also worked with the community to develop and test a program that could be used by early intervention providers and families to learn ESDM strategies through a combination of online lessons and videos accompanied by coaching from their early intervention provider. Caregivers and early intervention providers used Help is in Your Hands (helpisinyourhands.org), to learn ESDM content through brief web-based lessons with video examples. Early intervention providers coached caregivers in use of the strategies during daily activities with their own child. Overall, ESDM-trained providers improved in their caregiver coaching and partnership skills, and caregivers made strong gains in their use of the ESDM strategies after training. This study was deliberately conducted in rural areas of the United States with families living in poverty to determine how well this approach would work for historically underserved families.
In another recent study we examined child and family outcomes from a community-based, pilot test of Project ImPACT. Twenty-five families of toddlers with social communication challenges received either Project ImPACT or their usual care early intervention through Part C. In Project ImPACT, from the very first appointment, the caregiver is involved in choosing treatment goals and provides input throughout the course of treatment regarding treatment progress, strategies, and fit. Caregivers and early intervention providers work together to carefully plan the use of Project ImPACT intervention strategies at home. In the pilot trial, we found that early intervention providers trained in Project ImPACT used more caregiver coaching strategies and partnered well with families. In turn, we saw greater improvements in positive caregiver-child interactions for Project ImPACT families with accompanying larger changes in children’s social and communication skills. Half of the families in the study indicated they were Hispanic/Latinx and almost a third received the intervention in Spanish. We are currently conducting a larger study to further explore use of Project ImPACT by early intervention providers in California. Participating early intervention providers receive training in Project ImPACT free of charge. This study will give us more information about usual care for caregiver-mediated intervention for young children with high likelihood of autism and if early intervention provider training in Project ImPACT improves outcomes for children and families. To learn more about this study click here: https://bridgecollaborative.com/training, ongoing study recruitment is happening now.
Research studies such as these would be impossible to do without strong partnership between researchers and community stakeholders such as community providers, funders, caregivers, and autistic individuals. Community stakeholders who partner with researchers directly contribute to the development of adaptations that support use of evidence-based intervention in community programs across varied cultures. Researchers and community stakeholders have worked together to make prospective user-informed adaptations and then conduct studies to make sure the adapted versions of the interventions continue to have the intended positive benefit for children and families. This process contributes greatly to the collective effort to ensure evidence-based practice interventions are available to ALL families who desire them.
Dr. Aubyn Stahmer is a professor of psychiatry and behavioral sciences at the UC Davis MIND Institute. She also directs the Center of Excellence in Developmental Disabilities. She is an expert in the translation of evidence-based autism research to community-based practice and delivery. The main goals of her research include developing ways to help community providers, such as teachers and therapists, help children with autism and their families by providing high quality care. She is an internationally respected expert in the use of naturalistic developmental behavioral interventions which are validated treatments for autism. Dr. Stahmer has conducted extensive research in the areas of parent coaching, early intervention, inclusive education and services research in autism spectrum disorders. Dr. Stahmer leads several grants funded through the U.S. Department of Education that involve adapting evidence-based practices for children with autism in collaboration with teachers and community providers.
Sarah Dufek, Ph.D., BCBA-D is an assistant professor of psychiatry and behavioral sciences at the UC Davis MIND Institute. She is a licensed psychologist and board-certified behavior analyst with expertise in the assessment and treatment of ASD across the lifespan. She has been working with children, adolescents, and adults with ASD and related developmental disabilities in clinical and research contexts since 2000. The main goals of her research include developing and improving assessment and treatment practices for families with children with ASD and related conditions. She is particularly interested in research questions related to access to quality services for families who are historically underrepresented.
