Systems-Level Priorities

• Autism characteristics and causes
• Co-occurring conditions (e.g., ADHD, apraxia of speech, gastrointestinal disorders, hypermobility, ARFID), common strengths and challenges, and the influence of the social-cultural context on autism
• Wide-ranging therapy options to recommend to families, and cultural fit of common therapies
• Social and biopsychosocial models of disability
• Systemic biases influencing access and appropriateness of services and supports (e.g., systemic racism, sexism, and ableism)
• Use of dynamic assessment, ethnographic interviewing, and other non-standardized assessment practices that may more accurately reflect child skills and caregiver-reported strengths, challenges, and actual concerns

Supporting Evidence:

Therapists are a common source of information about autism and EI services for parents (Gibson et al., 2017), but caregivers have also reported feeling unsupported by health professionals during the diagnostic process and when navigating services for their child (Smith et al., 2023). Some caregivers report that their healthcare providers gave them inaccurate or insufficient advice (Stahmer et al., 2019), signaling a need for increased education about autism, related challenges and areas of strength. Many families report barriers to accessing services such as lack of knowledge or stigma about autism in their communities, which may be exacerbated by cultural factors given systemic biases and racism in medical and educational systems (Stahmer et al., 2019). Autistic adults also experience healthcare barriers, specifically in areas related to emotional regulation, patient-provider communication, and healthcare navigation (Raymaker et al., 2017). Setting a stronger foundation for positive healthcare-related experiences from early in life may have a cascading impact on experiences as autistic children age and access services into adulthood.

• Culturally-responsive practice
• Identity- and neurodiversity-affirming practices
• Strengths-based practices, and how to support autistic children with challenges in non-stigmatizing ways
• Self-reflection and cultural humility
• Respecting decision-making and boundaries for the child and family

Using Comparative Effectiveness Research:

• Compare diagnostic and caregiver education approaches that use traditional and neurodiversity-affirming approaches on caregiver self-efficacy, satisfaction, and knowledge about autism

Supporting Evidence:

EI services should be tailored to meet the needs and preferences of unique families, and should provide a foundation for child development and caregiver involvement in their child’s care. Identity/neurodiversity-affirming practices are those that center the norms and preferences of autistic people, and there are increasing calls for a shift to such a focus in EI research and practice (Dawson et al., 2022). There are also calls for strengths-based approaches in EI therapy (Mottron, 2017) and diagnostics (Brown et al., 2021). However, there is little research about concrete strategies and practices that fit these approaches. Furthermore, given the systemic barriers and biases faced by many families in the EI system, culturally-responsive practices that center each family’s unique cultural identity may also improve the effectiveness and satisfaction with EI services.

• Respite care
• Daycare/childcare services meeting the child’s needs, and better access to daycare/childcare-based therapy options
• Culturally-specific and adapted services
• Services in crisis situations (e.g., eviction, expulsion from daycare, interpersonal violence, neglect, and abuse)
• Financial supports to access services and tools to help their child

Supporting Evidence:

There are many barriers to accessing important EI services for autistic children and their families, including accessibility and lack of financial support (Thomas et al., 2007). Families’ financial burdens can result from time-burdens and employment challenges while trying to access services (Wallace-Watkin et al., 2023). Respite care has also been reported as a useful resource for caregivers, but barriers such as cost and lack of information have prevented many families from accessing these services (Cooke et al., 2020). Cultural barriers such as a lack of bilingual EI providers, under/mis-diagnosis, and lack of public health education and services in underserved communities present challenges for many families to access EI services (Stahmer et al., 2019; Wallace-Watkin et al., 2023). EI services that are created and carried out within cultural communities have been found to be effective and socially valid (Dababnah et al., 2021; Magaña et al., 2017).

• Collaboration and coordination for team members across discipline
• Provider-family collaboration for families who cannot attend sessions
• Providers from historically unrepresented communities to join EI
• Increased knowledge of autism and access to diagnostic/therapy services for families in communities underserved by the EI system
• Continuity of care for children and families transitioning between systems (e.g., a transition support person who was present through the child’s EI process to facilitate a smooth transition to preschool/Part B services)

Many families face barriers to accessing acceptable, feasible, and family-centered services for their child and themselves. While changes on a provider-level may reduce some of these barriers, systemic changes may also be required to enable effective and accessible services for families receiving services in unique geographic and social-cultural contexts. Specific EI policies are usually created on a state-level. Families also face unique barriers and facilitators to accessing EI services. Taken together, the applicability of services in the research setting may not apply to the entire EI population. Furthermore, there may be some recommended practices (e.g., interdisciplinary collaboration, family involvement) that are constrained at the system-level. Researchers should investigate various models of care and the systems-level determinants of the implementation of these approaches for unique families. Additionally, the structure and function of the EI system is vastly different from publicly-funded preschool services, and caregivers report that the transition between programs is a stressful experience with which they could benefit from increased supports (McWilliam, 2016). Researchers should also consider the appropriateness of their models in these systems and strive for equitable access to evidence-based services for all families served in EI.

• How do we effectively streamline services across disciplines (e.g., primary provider models, transdisciplinary approaches)?
• How applicable are commonly-researched therapy formats (modalities, frequency, session lengths) to the constraints of EI systems between states?
• How does receiving therapy from a provider of the same cultural background influence effectiveness and satisfaction with therapy?
• How do commonly-used strategies and therapies for other developmental disabilities benefit autistic children?
• How do we facilitate easier and more feasible access/coverage to services through the EI system and private insurance?
• What supports can be used to prepare caregivers to continue supporting their child’s development after their child ages out of EI (i.e., due to the academic-focused nature of school-based services provided by Part B of Individuals with Disabilities Education Act), especially for those who cannot access additional services outside of the public system?

Brown, H. M., Stahmer, A. C., Dwyer, P., & Rivera, S. (2021). Changing the story: How diagnosticians can support a neurodiversity perspective from the start. Autism, 25(5), 1171–1174. https://doi.org/10.1177/13623613211001012

Cooke, E., Smith, V., & Brenner, M. (2020). Parents’ experiences of accessing respite care for children with Autism Spectrum Disorder (ASD) at the acute and primary care interface: A systematic review. BMC Pediatrics, 20(1), 244. https://doi.org/10.1186/s12887-020-02045-5

Dababnah, S., Shaia, W. E., Kim, I., & Magaña, S. (2021). Parents Taking Action: Adapting a Peer-to-Peer Program for Parents Raising Black Children With Autism. Inclusion, 9(3), 205–224. https://doi.org/10.1352/2326-6988-9.3.205

Dawson, G., Franz, L., & Brandsen, S. (2022). At a Crossroads—Reconsidering the Goals of Autism Early Behavioral Intervention From a Neurodiversity Perspective. JAMA Pediatrics, 176(9), 839–840. https://doi.org/10.1001/jamapediatrics.2022.2299

Gibson, A. N., Kaplan, S., & Vardell, E. (2017). A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 47(7), 2189–2204. https://doi.org/10.1007/s10803-017-3127-z

Magaña, S., Lopez, K., & Machalicek, W. (2017). Parents Taking Action: A Psycho-Educational Intervention for Latino Parents of Children With Autism Spectrum Disorder. Family Process, 56(1), 59–74. https://doi.org/10.1111/famp.12169

McWilliam, R. A. (2016). Birth to Three: Early Intervention. In B. Reichow, B. A. Boyd, E. E. Barton, & S. L. Odom (Eds.), Handbook of Early Childhood Special Education (pp. 75–88). Springer International Publishing. https://doi.org/10.1007/978-3-319-28492-7_5

Mottron, L. (2017). Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? European Child & Adolescent Psychiatry, 26(7), 815–825. https://doi.org/10.1007/s00787-017-0955-5

Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., Hourston, S., & Nicolaidis, C. (2017). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21(8), 972–984. https://doi.org/10.1177/1362361316661261

Smith, H., Black, M. H., Thompson, C., Falkmer, M., Falkmer, T., Girdler, S., & Milbourn, B. (2023). Exploration of caregiver experiences of reported first signs of autism. Child: Care, Health and Development, 49(5), 879–888. https://doi.org/10.1111/cch.13096

Stahmer, A. C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F. R., Luelmo, P., Morgan, E. H., Lee, H. S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., Hassrick, E. M., Smith, T., & Kasari, C. (2019). Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services. Journal of Racial and Ethnic Health Disparities, 6(4), 752–773. https://doi.org/10.1007/s40615-019-00575-y

Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to Care for Autism-Related Services. Journal of Autism and Developmental Disorders, 37(10), 1902–1912. https://doi.org/10.1007/s10803-006-0323-7

Wallace-Watkin, C., Sigafoos, J., & Waddington, H. (2023). Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review. Autism, 27(3), 588–601. https://doi.org/10.1177/13623613221123712