Caregiver-Focused Research Priorities

• Caregivers who cannot attend sessions
• Daycare-based EI services
• Single-parent homes

• Caregiver coaching groups (vs only 1:1 coaching)
• Relational coaching practices (e.g., trust, mutual respect, and relationship-building)
• Live video and Asynchronous coaching methods, especially for caregivers who cannot attend sessions during the workday or in a daycare, clinic, or other setting

• Appropriateness and feasibility for wide-ranging family structures
• Child developmental outcomes
• Caregiver: learning, stress, and feelings of community/social inclusion
• Family-child relationships, including long-term relationships

• How can other family members besides parents (e.g., siblings, grandparents) who are present for EI sessions be involved in beneficial ways?
• How do we individualize caregiver involvement to prioritize each caregiver and child’s unique needs and preferences (e.g., for families who cannot or prefer not to be coached)?
• What is the impact of family coaching approaches (education and strategies) for behavior management on children’s emotional regulation and family-child relationships?
• What is the impact of caregiver coaching approaches when a caregiver is learning techniques in multiple domains (e.g., speech therapy, occupational therapy), or from different frameworks (e.g., behavioral developmental, neurodiversity-affirming)?
• How might we explain different therapeutic frameworks to caregivers so they can make decisions about strategies they would like to be taught?
• How do we support decision-making and family involvement in EI for families with more interdependent cultural orientations, caregiving styles, or decision-making methods?

For Comparative Effectiveness Research:

• Compare the effect of caregiver-implemented interventions delivered via alternate modalities on implementation-related outcomes for caregivers who cannot attend their child’s regular EI sessions
• Compare the effect of caregiver-implemented interventions with an intentional focus on relational coaching practices to participatory-only coaching approaches on child and caregiver outcomes

• Common characteristics and co-occurring conditions
• Autism from a strengths-based lens
• Culturally-specific understanding of autism
• Information about potential trajectories of skill development, areas of strength, and areas of challenge to prepare for as autistic people age
• Sensory needs and preferences
• Strategies for potty training, mealtime, and other activities of daily living
• Perspectives and experiences of autistic adults
• Perspectives from other caregivers of autistic children (especially from similar cultural or geographic communities)

Using Comparative Effectiveness Research…

• Compare caregiver-related outcomes for approaches focused on advocacy and strategy implementation (and combined approaches)

Supporting Evidence:

Caregivers of autistic children report prioritizing opportunities for learning more about autism and related therapy services in the period following their child’s diagnosis (Crane et al., 2018). Physicians are often caregivers’ first point of contact for questions about their child’s development, but many introduce autism from a deficit-based perspective (Brown et al., 2021). Minoritized families experience significant cultural and systemic barriers in access to quality autism care (Magaña et al., 2013; Weitlauf et al., 2024; Zuckerman et al., 2017). Additionally, researchers must account for cultural differences in caregivers’ knowledge of autism and perception of advocacy and empowerment when considering how to better support them during EI (Burke et al., 2024). In general, it is evident that caregiver involvement in children’s autism interventions, and in turn increased knowledge of autism, is associated with higher caregiver self-efficacy and satisfaction with services (Kurzrok et al., 2021; Schertz et al., 2020).

• Information about a wide range of therapies, supports, and approaches
• Options for different communication modalities and methods (e.g., AAC, sign, delayed echolalia/scripting
• Information about evaluation processes, eligibility criteria, goal-setting processes, session activities, and other logistics of the EI system
• Guidance about long-term decision-making about caregiving practices and goal development
• Resources to use for accessible and trustworthy information about autism

Supporting Evidence:

Caregivers, particularly those from minoritized backgrounds, report minimal knowledge about and increased stress related to navigating autism services, such as transitioning from early intervention into the special education system (Buren et al., 2020; Burke et al., 2024; Rios & Buren, 2024; Zuckerman et al., 2017). Caregivers also report frustration from insufficient support in the post-diagnostic period along with difficulties trusting and challenging their providers (Carlsson et al., 2016). These factors are additionally complicated by the fact that primary care physicians who caregivers trust and rely on for knowledge about their child’s development, are frequently lacking knowledge about autism and related services (Rhoades et al., 2007). As a result, families often seek other sources of support and information which may be misleading, inaccurate, or even harmful.  Prioritizing resources that inform about diverse and trustworthy autism services is of particular importance given that knowledge of these services and caregiver empowerment, are related to increased family access to therapies (Burke et al., 2020).

• Advocacy and emotional support when facing doubt, stigma, or judgment from others (e.g., family members, clinicians) due to cultural, religious, or societal beliefs about autism and disability
• Advocating for their child’s needs for the social/sensory environment during interactions and activities that are meaningful to the family
• Emotional support when experiencing fatigue, stress, guilt, or overwhelm, without placing blame on or stigmatizing the child
• Connections with other caregivers of autistic toddlers
• Supports for caregivers who are learning that they are autistic through their child’s diagnostic process
• Supports for caregivers to balance their own needs (sensory, emotional, physical, etc.) with those of their child

Supporting Evidence:

Many caregivers of autistic children experience high levels of and stigma (Kinnear et al., 2016). There is evidence to suggest that stigma may be related to unmet needs for their child (Zuckerman et al., 2018). Caregivers of autistic children also report feeling stigma or embarrassment due to factors such as misattributions of autism characteristics, cultural perceptions of disability, and lack of support and understanding by family and friends (Broady et al., 2017; Zuckerman et al., 2014). Peer-support programs have been found to be effective and socially valid for supporting a wide variety of outcomes for caregivers of autistic children (Dababnah et al., 2021; Magaña et al., 2017), and further research may contribute to the widespread development of such support models. There is also report of many caregivers learning that they are autistic through their child’s diagnostic process (Moorhead, 2021), and this phenomenon and its effect on caregivers and children should be studied more robustly in the future.

Akhbari Ziegler, S., & Hadders-Algra, M. (2020). Coaching approaches in early intervention and paediatric rehabilitation. Developmental Medicine & Child Neurology, 62(5), 569–574. https://doi.org/10.1111/dmcn.14493

Broady, T. R., Stoyles, G. J., & Morse, C. (2017). Understanding carers’ lived experience of stigma: The voice of families with a child on the autism spectrum. Health & Social Care in the Community, 25(1), 224–233. https://doi.org/10.1111/hsc.12297

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

Buren, M. K., Maggin, D. M., & Brown, C. (2020). Meta-synthesis on the experiences of families from nondominant communities and special education collaboration. Exceptionality, 28(4), 259–278. https://doi.org/10.1080/09362835.2018.1480953

Burke, M. M., Rios, K., Garcia, M., & Magaña, S. (2020). Examining differences in empowerment, special education knowledge, and family–school partnerships among Latino and White families of children with autism spectrum disorder. International Journal of Developmental Disabilities, 66(1), 75–81. https://doi.org/10.1080/20473869.2018.1487502

Burke, M. M., Terol, A. K., Best, M., Cheung, W. C., & Hardy, A. (2024). Improving the Cultural Responsiveness of Measures for Latino Families of Children with Autism. Journal of Developmental and Physical Disabilities. https://doi.org/10.1007/s10882-024-09954-8

Carlsson, E., Miniscalco, C., Kadesjö, B., & Laakso, K. (2016). Negotiating knowledge: Parents’ experience of the neuropsychiatric diagnostic process for children with autism. International Journal of Language & Communication Disorders, 51(3), 328–338. https://doi.org/10.1111/1460-6984.12210

Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., & Hill, E. L. (2018). Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals. Journal of Autism and Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1

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

Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives. Journal of Autism and Developmental Disorders, 46(3), 942–953. https://doi.org/10.1007/s10803-015-2637-9

Kurzrok, J., McBride, E., & Grossman, R. B. (2021). Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden. Autism, 25(5), 1395–1408. https://doi.org/10.1177/1362361321990931

Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to Diagnosis and Treatment Services Among Latino Children With Autism Spectrum Disorders. Intellectual and Developmental Disabilities, 51(3), 141–153. https://doi.org/10.1352/1934-9556-51.3.141

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

Moorhead, J. (2021, December 16). ‘A lot fell into place’: The adults who discovered they were autistic – after their child was diagnosed. The Guardian. https://www.theguardian.com/society/2021/dec/16/adults-discovered-autistic-child-diagnosed-autism

Pickard, K. E., Kilgore, A. N., & Ingersoll, B. R. (2016). Using Community Partnerships to Better Understand the Barriers to Using an Evidence-Based, Parent-Mediated Intervention for Autism Spectrum Disorder in a Medicaid System. American Journal of Community Psychology, 57(3–4), 391–403. https://doi.org/10.1002/ajcp.12050

Rhoades, R. A., Scarpa, A., & Salley, B. (2007). The importance of physician knowledge of autism spectrum disorder: Results of a parent survey. BMC Pediatrics, 7(1), 37. https://doi.org/10.1186/1471-2431-7-37

Rios, K., & Buren, M. (2024). Parents’ Experiences Transitioning From Early Intervention Services to School Services. Journal of Early Intervention, 46(1), 58–75. https://doi.org/10.1177/10538151231159634

Schertz, H. H., Lester, J. N., Erden, E., Safran, S., & Githens, P. (2020). Challenges and contributors to self-efficacy for caregivers of toddlers with autism. Autism, 24(5), 1260–1272. https://doi.org/10.1177/1362361319899761

Tomczuk, L., Stewart, R. E., Beidas, R. S., Mandell, D. S., & Pellecchia, M. (2021). Who gets coached? A qualitative inquiry into community clinicians’ decisions to use caregiver coaching. Autism, 13623613211059499. https://doi.org/10.1177/13623613211059499

Weitlauf, A. S., Miceli, A., Vehorn, A., Dada, Y., Pinnock, T., Harris, J. W., Hine, J., & Warren, Z. (2024). Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care. Journal of Autism and Developmental Disorders, 54(3), 931–942. https://doi.org/10.1007/s10803-022-05861-z

Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Cobian, M., Macias, K., Reynolds, A. M., & Smith, K. A. (2018). Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample. Journal of Autism and Developmental Disorders, 48(9), 3199–3209. https://doi.org/10.1007/s10803-018-3586-x

Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families. Pediatrics, 139(5). https://doi.org/10.1542/peds.2016-3010

Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of Autism in the Latino Community and its Relationship with Early Diagnosis. Journal of Developmental and Behavioral Pediatrics : JDBP, 35(8), 522–532. https://doi.org/10.1097/DBP.0000000000000091