Specific Research Priorities for Early Intervention Autism Research

The outcomes, therapeutic approaches, and questions listed in this tool are intended to guide the conceptualization of studies, especially CER studies. The therapeutic approaches may guide the adaptation of existing approaches to better fit community needs and preferences, and may facilitate the development of new approaches, that should be tested in future CER studies. The questions included in this list also represent information we believe is important for creating a foundation for strong, community-driven EI autism research.
The specific research priorities are categorized into a variety of topics. Below we describe “overarching outcomes” that are important to consider regardless of the research question. Then, we will link to additional pages where you can read more about the specific priorities. Categories include:

 

  1. Overarching Outcomes to be Measured Across Questions
  2. Child-Focused Priorities
  3. Caregiver-Focused Priorities
  4. Family, Sibling, and Peer-Specific Priorities
  5. Systems-Level Priorities
Download the full tool here
View the Guiding Principles

Overarching Outcomes to be Measured Across Questions

Comparative Effectiveness Research (CER) focused on the priorities of the community is critical to helping caregivers make decisions about their child’s EI care. Below is information about benefits and harms we believe are always important to measure across research questions. We believe that the benefits below represent the ultimate goals of EI therapies and supports, and that they are foundational for autistic children and families to live happy, fulfilling, satisfying lives. As such, they are an essential piece of what “efficacy” or “effectiveness” should mean. These outcomes should be considered in CER studies investigating skills across developmental domains.

The inclusion of these outcomes (and those in other parts of this tool) may require the development of new quantitative measures, the use of more qualitative and mixed methods study designs, and the use of longitudinal study designs. Additionally, we understand that some of the skills included (e.g., autonomy, emotional regulation) are only emerging in toddlerhood; the intentional measurement of foundational outcomes and consideration of the skills and social environment needed to develop these skills should be included in future research as well.

Potential Benefits

Increased well-being (child and caregiver)

Decreased Stress (child and caregiver)

Increased emotional regulation (child and caregiver)

Increased autonomy

Increased self-advocacy (child and caregiver)

Increased participation in daily routines

Increased sensory regulation

Foundations for self-understanding, self-acceptance, and a positive connection to their autistic experience

Positive relationships between the autistic child and their family, and the EI provider

Relationships and connection with the local community and autism/autistic communities

Potential Harms

Reduced well-being (child and caregiver)

Increased stress (child and caregiver)

Decreased emotional regulation (child and caregiver)

Decreased autonomy

Increased compliance (child)

Acculturation