Abstract
Many autistic adults report negative long-lasting consequences of their early childhood therapy experiences, calling for supports that promote development and inclusion according to their natural ways of learning and being, instead of using non-autistic developmental standards. In the United States (US), young children with disabilities receive services through early intervention (EI), a federally-mandated program with a focus on helping families understand and support their child; however, much of current autism research is child-focused, limiting its ability to address key clinical practice needs. Together, this demonstrates the misalignment of autism therapy research with the goals of many autistic people and caregivers, and the contextual demands of EI. This manuscript reports the outputs of a collaborative project in which 17 autistic adults, autistic caregivers, and non-autistic caregivers of autistic children living in the US developed guiding principles and priorities for future early childhood autism research. This project will provide a foundation for autism researchers to develop therapies and supports that are aligned with community needs and priorities, resulting in more equitable and effective practices for the diverse families served through EI. The full list of guiding principles and priorities may be viewed at https://www.eicollab.northwestern.edu/research-priorities/.
Lay Abstract
Many autistic people say that their childhood therapies caused them harm. Some parents of autistic children say that their child's services don't help them in the ways they need. In this project, 17 autistic adults, autistic parents, and non-autistic parents (“community partners”) described their ideas for autism research. Their ideas included questions, goals, and new therapies that researchers should study. They also described ideas that will make research more fair and inclusive. The community partners made final decisions about the ideas to put in the complete list.
Some ideas were about ways to help children learn new things. This included skills and therapies like self-advocacy, sensory regulation, and child-led play. Community partners also described that therapies should avoid using compliance as a way to teach children new skills. Other ideas were about helping families support the child. This included ideas like helping families understand autism and advocate for their child's needs. Community partners also said that these supports should not blame the child for family challenges. Ideas also described helping other people understand and respect autistic children (siblings, relatives, family friends, clinicians).
The ideas in this list will help researchers understand community needs. Many of the therapy approaches on this list are different than the approaches that researchers study. So, researchers who use ideas like those in this list may also create more respectful and helpful therapies. Researchers should work with community partners to design research studies about the topics on this list. This will ensure that future research matches these community preferences.
Introduction
Autistic children have differences in the development and use of skills across developmental domains which, in combination with an unaccommodating environment, may lead to difficulties participating in academic, social, and daily living activities. There are extensive efforts to develop therapies to ameliorate some of these challenges early in life, but some autistic scholars and adults argue that the deficit-oriented nature of the goals and practices historically used in these therapies ignore autistic strengths and have long-lasting negative consequences on autistic people's well-being throughout the lifespan (Dawson et al., 2022; Kapp et al., 2019; Ne’eman, 2021). In the United States (US), these therapies will frequently be implemented through the Early Intervention (EI) program. The goal of EI is to provide a foundation for child development and build caregivers’ capacity to support their child. However, only 23% of caregivers report being taught how to support their autistic child during EI sessions (Aranbarri et al., 2021). These problems suggest that the research informing clinical practice may be misaligned with the needs of autistic people and families, and the contextual demands of EI. This project brings together autistic adults, autistic caregivers, and non-autistic caregivers of autistic children living in the US to outline guiding principles and priorities for future research so that therapies will better align with community and system goals.
Early Childhood Therapies in Context: Early Intervention
Therapies that align with the setting in which they will be implemented are more likely to be used in real-world settings (Bauer & Kirchner, 2020). As such, it is critical for early childhood therapies for autistic toddlers in the United States to align with the structure and goals of EI. The EI program provides services (e.g., speech therapy, occupational therapy) to children with disabilities in toddlerhood, and as mandated by the Individuals with Disabilities Education Act (IDEA; 2004), one of its cornerstones is family-centered practice. According to IDEA, services provided through EI should center families as the unit of care by building caregivers’ capacity to understand their child's needs, enhance their child's development, and make decisions about goals and practices suited to their family's preferences. However, as we will describe below, early childhood autism therapies in research settings lack consideration of diverse family goals and caregiving preferences. Some also argue that autism researchers fail to consider the full range of family coaching practices and outcomes prioritized by the EI program (Akhbari Ziegler & Hadders-Algra, 2020; Stahmer & Pellecchia, 2015; Wainer et al., 2017). Thus, early childhood autism therapies are likely not designed to facilitate family-centered services for all families, misaligning them with the EI program.
Deficit-Based Conceptualizations of Autism
Research may also be misaligned with autistic people's conceptualizations of autism. Researchers have traditionally viewed autism through a medical model of disability in which characteristics of autism are considered to inherently inhibit autistic children's development and functioning (Anderson-Chavarria, 2021). Common characteristics of autism include differences in social communication, sensory processing, motor skills, preferences for routines, presence of repetitive movements and behaviors, and areas of focused interest (American Psychiatric Association, 2013). Research conducted through the lens of the medical model has largely focused on eliminating these characteristics or promoting skill development in these domains according to the norms of “typically-developing” non-autistic children (Pellicano & den Houting, 2022). The pervasiveness of the medical model is easy to identify when analyzing what researchers choose to measure as a “successful” therapy outcome. For example, in a meta-analysis of early childhood autism research, overall autism characteristics were a commonly-included outcome measure (Sandbank et al., 2023), demonstrating that the reduction of autism characteristics was viewed as a favorable outcome of therapy.
However, a growing body of research suggests that autistic people develop and use some skills in a different—not necessarily disordered—way. For example, echolalia is often described to be a powerful form of communication for some autistic people (Prizant & Rydell, 1984; Sterponi & Shankey, 2014), but in a recent systematic review of 15 intervention studies involving echolalia, all studies aimed to eliminate it (Blackburn et al., 2023). Autistic children have been observed to avert eye gaze to reduce cognitive load during demanding tasks (Doherty-Sneddon et al., 2012), and a content analysis of online discussions by autistic people revealed that they describe reducing eye contact to facilitate sensory regulation (Trevisan et al., 2017). However, eye contact has been conceptualized as integral to complex forms of engagement and communication in research (Adamson et al., 2004; Brady et al., 2020). This raises questions about whether social communication supports that aim to eliminate “atypical” behaviors (echolalia) or that use the assumed communication norms of non-autistic children (eye contact) could have unintended effects on autistic children. Therapies that aim to reduce potentially functional traits may also have negative long-term effects on autistic people, as suppressing autistic characteristics has been associated with mental health difficulties for some autistic people (Beck et al., 2020; Cook et al., 2021). This points to the need for researchers to challenge their assumptions about the functions of behaviors, and to learn about autism from autistic people directly, to ensure their research is compatible with autistic people's lived experiences.
Marginalized Communities in Early Childhood Autism Therapies
Given that early childhood autism research primarily investigates manualized therapy programs targeting a limited range of goals (Sandbank et al., 2023), and that it predominantly includes white families (Steinbrenner et al., 2022), it is likely that current approaches are not tailored to fit the priorities and preferences of historically excluded families. A comprehensive body of cross-cultural research has demonstrated that cultural identity influences caregivers’ desired goals for their child. For example, European American caregivers have endorsed different skills as being important for their preschool-aged child than Asian American (Parmar et al., 2004) and Puerto Rican caregivers (Achhpal et al., 2007). Latine caregivers were found to use collaborative interactional styles aligned with interdependent cultural orientations, in contrast with common therapeutic practices that focus on children independently performing skills (Guiberson & Ferris, 2019). Caregiver responsiveness is also a strategy included in many autism therapies, but this construct may be defined differently across cultures (Bernstein et al., 2005), suggesting that a narrow definition of responsiveness may not fit all families.
Caregiving practices may also be influenced by caregiver availability, dispersion of responsibilities in diverse family structures, and other factors often associated with socioeconomic status (SES; Hoff & Laursen, 2019; Sullivan, 2017). It is therefore not surprising that families in rural and underserved locations report feasibility barriers to implementing efficacious practices (Antezana et al., 2017; Pickard et al., 2016; Singh et al., 2019). Additionally, many caregivers of autistic children are themselves autistic, and in preliminary qualitative work, many autistic caregivers report that they have unique needs and caregiving practices (Crane et al., 2021; Radev et al., 2024). However, researchers have yet to develop or adapt therapies to suit the needs of autistic parents. Centering assumptions about the interactional styles of neurotypical people and white families of high SES may narrow the field's view of “high-quality” practices, resulting in deficit-oriented views of some families and inequitable access to effective and appropriate services.
Shifting Power to the Community: Current Project
There is a pressing need for radical change in autism research to align with community preferences and contextual demands. Currently, researchers hold power over how outcomes and therapy approaches are designed for implementation in clinical practice. However, community members (in this manuscript, defined to include autistic adults and caregivers of autistic children, including autistic caregivers) should have agency over the knowledge-production processes impacting their access to services to ensure they are in line with their needs. Community-engaged approaches, including participatory research, are crucial for shifting power to the community members who are directly impacted by the research (see Arnstein, 2019 and McCloskey et al., 2011 for more information). This project used a community-engaged approach in which autistic adults, autistic caregivers, and non-autistic caregivers of autistic children described their ideas for future EI autism research. Unlike a formal research study in which researchers have control over interpreting and presenting the data provided by participants, our community partners had control over the content and presentation of their ideas. This approach was used to empower community members who have been impacted by EI autism research to communicate with researchers about changes they wish to see in the field. The following aims were addressed in this project:
Aim 1: To create guiding principles (e.g., guidelines and considerations that apply across research studies and contexts) for early childhood autism therapy research. Aim 2: To create research priorities (e.g., outcomes to prioritize and specific research ideas) to be investigated in future early childhood autism therapy research.
Methods
Community Partner Demographics
This project was a collaboration between 17 community partners and seven project team members. Community partners were identified through personal connections, prior research study participation, social media, and word of mouth. Community partners resided across the US due to the EI focus in this project, but lived in various regions of the country. Eleven community partners participated on an advisory board for an ongoing project with the project team, and six additional community partners contributed to the project on a short-term basis. Advisory board members were compensated at a rate of $100/hour to approximate the consultation rate of a researcher. The additional community partners were compensated $200 for each review of the tool (roughly equivalent to the $100/hour rate).
Community partners included three autistic adults without a child, seven autistic caregivers of an autistic child who received therapy services in early childhood, and seven non-autistic caregivers of an autistic child who received therapy in early childhood (see Table 1). Of the ten autistic community partners, five participated in some form of therapy or special education before the age of five, and four were formally diagnosed with autism in childhood. Autistic children of community partners ranged from two to 10 years of age. Additional background information about community partners’ identity characteristics and factors influencing their priorities can be found in Supplemental File 2. Seven project team members also contributed to project coordination. Two project team members were autistic, five were family members of an autistic individual, and three were also clinicians with experience working in EI.
Community Partner Demographics.
Note: *Person of the Global Majority refers to individuals who are Black, Brown, Indigenous, Asian, mixed heritage, and other People of Color. See Supplemental File 2 for self-reported cultural identity and other identity factors (e.g., gender, caregiving structures, financial factors).
Procedures
This collaborative project was created as part of a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-26927), and is not a formal research study. Activities related to the current project were conducted between January 2023 and May 2024, and information about the engagement strategies used to facilitate accessible participation is described in Supplemental File 1. The project was conducted virtually using a combination of group meetings and independently-completed activities.
The project aimed to achieve “engaged participation” (Goodman & Thompson, 2017) in which community members and the project team co-create project outputs. Community partners had control over the information they shared and how that information would be presented through the project tools. The ideas presented in the tool were generated by community partners and decisions were made via consensus of the advisory board, with the project team providing administrative support and guidance based on their knowledge of research and clinical practice. Additionally, to lessen the burden of participation on community partners’ time and to enhance inclusive participation, project team members designed individualized activities with flexible participation options, wrote the initial drafts of project tools, and coordinated updates to tools based on partners’ feedback.
Building the Partnership
Two advisory board meetings were held to build initial connections and trust. The first meeting was an orientation meeting where the project team described the project, and all collaborators shared information about themselves and their interests. In the second meeting, to deepen connections and establish goals for the collaboration, the advisory board discussed their experiences with EI (for themselves or their child), specific research/clinical methods and ideas, and what “ideal” EI should look like. The advisory board then spent six months in a capacity-building process through the co-creation of a tool describing research concepts (e.g., developing research questions and types of data) for community members (see https://www.eicollab.northwestern.edu/research-fundamentals-tool/). This process gave advisory board members a shared vocabulary and understanding of the research process to guide the creation of the guiding principles and research priorities.
Creation of the Guiding Principles and Research Priorities
The guiding principles and research priorities were created through iterative processes using group discussion and independent activities over six months. To begin this process, advisory board members completed a foundational activity in which they were prompted to reflect on early childhood therapy experiences (for themselves or for their child). They were given space to share their thoughts and research ideas in an open-ended manner, and to share specific research ideas corresponding to constructs in the “Population, Intervention, Comparator, Outcomes, Timing, Setting” (PICOTS) framework (Matchar, 2012). Both options were provided because some partners found it easier to organize their thoughts with more focused questions, and the PICOTS framework was described in the capacity-building tool to familiarize partners with terminologies that are commonly used by researchers. The project team used this foundational activity to generate first drafts of the guiding principles and research priorities. The additional six community partners who were not on the advisory board began participating after this foundational activity, and their contributions were given equal value as the advisory board and integrated into each draft of the tool.
To create the guiding principles, the first author reviewed the transcript from the community-building meeting and the foundational activity to extract overarching themes (i.e., the first draft of the guiding principles) and corresponding descriptions, including the relevant notes from the foundational activities that informed each theme. Community partners reviewed the guiding principles and descriptions and provided feedback via independent review and/or group meetings, after which the project team integrated their edits and new ideas. The final guiding principles and descriptions were finalized after two iterations of this process.
The research priorities included two components: 1) overarching priorities, and 2) specific research ideas. The overarching priorities included a list of outcomes that represent the “ultimate goals” of therapies and supports for autistic people and caregivers that should be measured in research studies across developmental domains. The specific research ideas refer to outcomes, therapy approaches, and questions to investigate in future research that will help autistic children and families meet their goals, including the overarching priorities. The overarching priorities were initially generated via group discussion in an advisory board meeting, and the initial list of specific research ideas was compiled using ideas generated in the foundational activity. Community partners provided feedback about the overarching priorities and specific research ideas via group meetings and independently-completed activities, and then the project team updated the list based on feedback. This iterative review process occurred two more times until the list was finalized.
All specific research ideas generated by community partners were included in the tool (instead of using a consensus-making method to produce a shorter list of priorities) following group discussions about the ways in which priorities vary between communities and families. By including all ideas, those that reflect marginalized experiences would not be excluded in favor of ideas that were relevant to a larger number of community partners. Community partners were given space to indicate if they disagreed with an idea, but no disagreements were reported. Additionally, community partners believed it was important to contextualize the priorities within the broader research literature, and thus the project team wrote summaries of supporting evidence for each topic with optional participation by community partners.
Community Involvement
Autistic individuals and caregivers of autistic children were involved in every part of the project from conceptualization to generating the content and organization of the tool, as well as optional participation in writing the current manuscript. More information about engagement strategies and decision-making processes are described in Supplemental File 1.
Results
This manuscript presents a summary of the guiding principles and research priorities (overarching priorities, specific research ideas) presented in the final tool; it may be viewed in its entirety at https://www.eicollab.northwestern.edu/research-priorities/.
Guiding Principles
Ten guiding principles were agreed upon by the community partners (Figure 1). They refer to considerations for investigating therapy approaches in autism research across developmental domains and the translational research continuum. This includes considerations about underlying conceptualizations of autism (e.g., Guiding Principle 4, 5, 6), social-cultural contexts and systems (e.g., Guiding Principles 2, 10), and individual- and family-level characteristics (e.g., Guiding Principles 8, 9). Researchers may use these guiding principles to reflect on the value of their research questions in answering questions of importance to the community, and to design more well-rounded and meaningful research in the future. Full descriptions and rationale for each principle may be found in the full tool.
Overview of the guiding principles and research priorities. Note. This figure represents an overview of the project components. The guiding principles should be embedded in research, such as the research described by the specific research ideas, to achieve the overarching priorities for autistic children. See the full tool for complete descriptions of the project components and supporting evidence for the research priorities. *Denotes an overarching priority that was deemed to be important to measure for caregivers as well as children.
Research Priorities
The research priorities include a) a list of “overarching priorities” including child and caregiver outcomes to promote in early childhood autism research, and b) a list of specific research ideas that may help children and families achieve the overarching priorities. The research priorities are not intended to represent an exhaustive and authoritative list of priorities that are relevant to the entire community in the same way, as priorities and the characterization of outcomes may vary for different contexts, children, and families. Instead, the priorities may be used to expand researchers’ knowledge of wide-ranging community preferences, and as a starting place from which they may engage with local or specific communities to further refine research questions tailored to specific contexts.
Examples of Specific Research Ideas.
Note. This table includes examples from each of the categories in the full tool, but readers should visit the full list of ideas at https://www.eicollab.northwestern.edu/research-priorities/.
*Child-focused research ideas also included specific skills and questions in each domain, but therapeutic approaches were highlighted to demonstrate how these ideas differ from current research and clinical practice, which was an important point of discussion between community partners.
Child-focused research ideas were categorized by developmental domain, and within each domain, ideas included specific skills to target, therapy approaches to target those skills, and questions that will produce relevant knowledge about that domain. Community partners also described domain-general therapies and support approaches that they perceived to be beneficial and therefore worthy of further research (e.g., educational apps). The child-specific research ideas also included outcomes and therapy approaches that community partners perceived to be harmful (e.g., desensitization therapies), but found worthy of future study to produce robust information about pros and cons of commonly-used approaches.
Caregiver-focused research ideas were subcategorized into three main categories. First, ideas related to caregiver coaching and involvement in EI, including specific coaching approaches and related outcomes and questions. Second, partners generated topics about which caregivers require more knowledge including autism and service-related information, and emotional supports. Third, partners identified a list of caregiver-focused outcomes to target in research. Together, these describe ways that caregivers can directly support their child, and ways in which they themselves require direct support to create a supportive environment for their child.
Family, sibling, and community-focused ideas included areas in which these individuals will benefit from increased knowledge to better understand and include the autistic children in their lives. Peer-focused research ideas included questions about ways to support social inclusion of autistic children with their peers. These ideas point to the role that a child's entire social environment plays in fostering their development and supporting their well-being.
Finally, systems-focused research ideas included support for EI providers and doctors, and EI system policy changes. The ideas related to EI providers and doctors include areas in which these providers require more knowledge, and practices that they should learn or utilize more frequently. Systems and policy-focused ideas included service options that families require better access to, systemic changes, and miscellaneous questions related to cross-system approaches to serving families (e.g., EI differences between states and transition services).
Discussion
EI autism research should be driven by those most impacted by the research: autistic people and caregivers. In this project, 17 community members identified guiding principles and research priorities to shape the future of this field of research. These principles and priorities urge researchers to view autistic children in their full context. Their EI experiences not only shape their developmental trajectories, but also provide a foundation to support their relationships, self-identity, and ultimately, their overall quality of life as they age. By intentionally considering the wide-ranging factors identified in this project when designing and testing therapies, researchers can develop supports that are embraced by the community and that provide a strong foundation for autistic children and their families to live fulfilling lives. Readers are encouraged to review the full tool for supporting evidence contextualizing the research ideas within the autism literature. Here, we describe primary takeaways derived from the guiding principles and research priorities developed during this project.
Support Autistic Children Through Their Social Environment
The outcomes of this project suggest that researchers should contextualize development within the broader social-cultural contexts and systems in which autistic children and families live, including supports tailored to a child's entire social environment. Much of early childhood autism research uses theoretical frameworks focused on caregiver-child interactions (e.g., social-interactionist and transactional models of development; Bottema-Beutel & Kim, 2021), thus producing clinical practice research focused on shaping caregivers’ input to best support their child's development (i.e., caregiver-mediated interventions [CMIs]). Although such approaches were also considered to be valuable in the current project (e.g., research ideas related to caregiver coaching), community partners also identified numerous other outcomes to target with caregivers (e.g., self-advocacy, well-being) that align not only with their needs, but with the family-centered goals of the EI system. Targeting such caregiver-focused outcomes may benefit caregivers directly, and could have additional downstream benefits on child developmental outcomes (Dunst et al., 2019; Trivette et al., 2010). The Early Childhood Outcomes (ECO) framework, which describes family outcomes prioritized in EI (e.g., knowledge of rights, family support systems, access to services), aligns closely with caregiver priorities identified in this project and has been recommended to better guide the development of autism CMIs (Wainer et al., 2017).
Furthermore, community partners identified numerous ideas emphasizing the influence of individuals in a child's entire social network (e.g., siblings, extended family, peers) on their development, social inclusion, and overall well-being. Caregiver community partners discussed the need to advocate for their child during interactions with extended family and friends, and both caregivers and autistic community partners expressed challenges finding community activities where autistic people could be safely included. Such experiences are not surprising given the high degrees of stigma and stress for autistic children and caregivers related to factors such as misunderstanding of autism by individuals in their lives and communities (Broady et al., 2017; Kinnear et al., 2016; Zuckerman et al., 2018). Given the caregiver-child focus of current research, autism researchers may need to utilize frameworks of development that consider a wider range of contextual factors in shaping a child's development, such as bioecological models of development (Bronfenbrenner & Morris, 2007; García Coll et al., 1996), to better meet community priorities such as those outlined in this project.
Not only will these frameworks encourage researchers to consider the role of a family's social environment, but they may also help researchers identify other social or cultural factors influencing outcomes and therapies that are meaningful and feasible for families. For example, in the current project, community partners identified numerous guiding principles (e.g., principles 7, 8) and specific research ideas (e.g., language therapies rooted in theories of bilingual language development) related to the influence of social and cultural factors. Current research often produces “ideal” therapies based on the assumed norms of dominant cultural groups that are then adapted to match the needs of marginalized communities, thus exacerbating deficit-oriented views of these children and families (Rogoff et al., 2017). Such an effect was identified by community partners through questions related to acculturation as a potential harm of current therapy approaches. Using frameworks like the bioecological model of development, as well as emerging autism-specific cross-cultural frameworks (e.g., de Leeuw et al., 2020) from early in the therapy development process will result in therapies tailored to specific contexts from the outset. This will provide more families and autistic children with access to desired services.
Shift to Using Neurodiversity-Aligned Therapy Approaches
A critical point of discussion throughout the project was the importance of therapy approaches that consider autistic people's perspectives and internal experiences without deficit-oriented comparisons to “typically-developing,” non-autistic children (e.g., Guiding Principles 4, 5, 6). For example, partners identified questions about understanding autistic developmental trajectories and preferences (e.g., for communication, play, social interactions), as well as approaches to increase acceptance of autistic characteristics by those in the child's social environment. These ideas are compatible with neurodiversity frameworks, which describe characteristics of autism and other neurodevelopmental conditions as part of the natural heterogeneity in human thinking and functioning (Dwyer, 2022). These approaches are argued to reduce deficit-oriented views of autism and improve the effectiveness of therapies by grounding them in knowledge of natural autistic developmental trajectories, and by promoting understanding and inclusion of autistic characteristics in the social and physical environment (Pellicano & den Houting, 2022).
The use of neurodiversity-aligned approaches has also been a key recommendation for future research through other community partnerships (Leadbitter et al., 2021; Roche et al., 2021) and community-engaged autism researchers (Dawson et al., 2022; McVey et al., 2023; Pellicano & den Houting, 2022), but there is a dearth of robust clinical practice research that intentionally uses neurodiversity frameworks to conceptualize early childhood therapy approaches and outcomes. Some researchers may dismiss neurodiversity frameworks because they believe they are only applicable to those with “less severe” autism characteristics (Jaarsma & Welin, 2012), perhaps because they perceive neurodiversity's advocacy for social-level changes as precluding the development of individual-level supports that many autistic people may require to access appropriate communication and participation in society. However, neurodiversity frameworks do call for individual-level supports, but in a way that does not center “typical” norms for development and functioning as an ideal outcome. The heterogeneity in neurodiversity frameworks and crossover between neurodiversity and other disability frameworks (Dwyer, 2022; Dwyer et al., 2024) may also lead to confusion about the application of neurodiversity frameworks in research. Researchers should challenge their assumptions about neurodiversity and collaborate with community members to evaluate the alignment of therapy approaches, outcome measures, and other research activities with neurodiversity frameworks, thus producing knowledge that reflects their experiences.
Consider Benefits and Harms of Therapy Approaches
Community partners identified numerous overarching priorities and research ideas related to harmful effects of early childhood autism therapies, indicating the importance of measuring potential benefits and harms of therapy approaches in research contexts. For example, community partners identified the need to investigate potential negative effects of Applied Behavioral Analysis and behavioral strategies (e.g., prompting, reinforcement) on autonomy and emotional regulation. Some autistic adults have reported short-term benefits of these approaches on teaching specific skills, but that their negative effects on factors such as their well-being and self-acceptance greatly outweighed these benefits (Anderson, 2023; McGill & Robinson, 2020). Other specific research ideas in the project tool point to similar tensions in balancing positive and negative effects of different approaches, such as balancing the desire to support autonomy with the need for compliance in certain situations. Providing caregivers with information about potential benefits and consequences is vital for informed decision-making, a key goal of the EI system (Division for Early Childhood, 2014). But in a recent review of early childhood autism research, researchers were found to underreport adverse events (Bottema-Beutel et al., 2021), limiting current understanding of the negative consequences of therapies in research contexts. Researchers should take community concerns seriously, and use rigorous frameworks like comparative effectiveness research to produce knowledge about benefits and harms in both short-term and long-term ways. Comparing traditional and adapted approaches, and including outcomes related to the benefits and harms outlined through this project, will enhance caregivers’ ability to make decisions around approaches that fit their priorities for their child and family.
Collaborate with Communities in the Research Process
Researchers should use community-engaged research (CEnR) to develop, adapt, and test therapies in ways that may be embraced by more autistic people and families. Some researchers may feel hesitant to integrate community experiences into research due to training based in epistemologies that center “objectivity” and identifying “universal truths.” However, these epistemologies may result in prejudiced or deficit-oriented knowledge that perpetuates harm to those who have been marginalized and excluded from research (Rogers et al., 2024). Interest in CEnR is emerging (Pickard et al., 2022), but many autism researchers lack formal training in appropriate methods. A number of resources have been developed to help autism researchers learn CEnR methods (e.g., Chown et al., 2017; Nicolaidis et al., 2019); the project through which the current tool was created also developed a tool introducing CEnR methods (https://www.eicollab.northwestern.edu/tool-for-researchers/). Some have even developed methods for engaging with very young children with developmental disabilities in the CEnR process (Carroll & Sixsmith, 2016). As evidenced by the robust list of ideas generated in this project, community members have many ideas that may expand the range of effective and feasible therapy options for autistic children and families. We encourage researchers to use these project outputs to learn more about autism from the perspective of the community, and then use this understanding to build authentic community partnerships.
Limitations
This project was initiated to empower autistic adults and caregivers of autistic children to communicate their experiences and priorities with the research community, thereby promoting researchers’ capacity to create community-centered research. The community-engaged approach allowed for more depth of discussion, capacity-building, inclusive design, community decision-making, and trust-building than traditional research, but we limited the number of collaborators to maximize these benefits. This small sample size limits the generalizability of the priorities to the entire community of autistic people and their families. Additionally, there was limited representation of autistic adults who are primarily nonspeaking or who have co-occurring intellectual disabilities, although caregivers in the project did have children with these intersecting identities. The project also included community members currently living in the US due to the focus on the EI system, which may limit the relevance of the identified priorities and principles to other contexts.
Although the contextualization of the priorities within literature (see “supporting evidence” in the full tool) and alignment with other community-led research agendas may add more validity to the generalizability of outcomes, this project should not be viewed as a definitive, exhaustive, or prescriptive list of research ideas. No community is a monolith; as previously established, there are a great number of factors influencing community members’ priorities. Thus, while this project demonstrates the direction in which many autistic people and families wish to see research develop, researchers are encouraged to engage with people in local contexts and specific communities to develop more tailored therapies and supports.
Conclusions
Aligning EI autism research with the goals and contexts of community members will enable more inclusive, feasible, and effective practice for a wider range of families. This project represents an important step in helping autism researchers understand the directions in which community members wish to see EI autism research go. Continued engagement with community members, including consideration of various intersections of identity in these community-engaged efforts, will result in early childhood therapies that meet the diverse needs of the entire community.
Supplemental Material
sj-docx-1-ndy-10.1177_27546330251338419 - Supplemental material for Guiding Principles and Research Priorities for Early Childhood Autism Therapy Research: Results of a Community-Engaged Project
Supplemental material, sj-docx-1-ndy-10.1177_27546330251338419 for Guiding Principles and Research Priorities for Early Childhood Autism Therapy Research: Results of a Community-Engaged Project by Jordan Lee, Morénike Giwa Onaiwu, Yesenia Boye, Gyasi Burks-Abbot, Sam Brandsen, Lucia Laurenti, Rebecca Logan, Eva Richardson Malone, Megan Tam, Samar Waqar, Deonna Wardlow and Megan Y Roberts in Neurodiversity
Supplemental Material
sj-docx-2-ndy-10.1177_27546330251338419 - Supplemental material for Guiding Principles and Research Priorities for Early Childhood Autism Therapy Research: Results of a Community-Engaged Project
Supplemental material, sj-docx-2-ndy-10.1177_27546330251338419 for Guiding Principles and Research Priorities for Early Childhood Autism Therapy Research: Results of a Community-Engaged Project by Jordan Lee, Morénike Giwa Onaiwu, Yesenia Boye, Gyasi Burks-Abbot, Sam Brandsen, Lucia Laurenti, Rebecca Logan, Eva Richardson Malone, Megan Tam, Samar Waqar, Deonna Wardlow and Megan Y Roberts in Neurodiversity
Footnotes
Acknowledgements
We would like to thank the community partners who contributed their ideas and experiences to this project. We would also like to thank supporting project team members Alana Glickman, Hannah Feiner, Rahma Almajid, and Katharine Bullock for their support with administrative tasks and compiling the supporting evidence presented in the project tool.
Ethical Considerations
The Institutional Review Board of Northwestern University waived the need for ethical approvals and informed consent due to this project not falling under the category of human subjects research. This project is a collaborative, community-engaged project in which community partners were hired as part of the project team, rather than a formal research study with participants.
Author Contributions
Jordan Lee: Conceptualization, funding acquisition, investigation, project administration, visualization, writing—original draft
Morénike Giwa Onaiwu: Conceptualization, funding acquisition, investigation, writing—review and editing, supervision
Yesenia Boye: Conceptualization, writing—review and editing
Gyasi Burks-Abbot: Conceptualization, writing—review and editing
Sam Brandsen: Conceptualization, writing—review and editing
Lucia Laurenti: Conceptualization, writing—review and editing
Rebecca Logan: Conceptualization, writing—review and editing
Eva Richardson Malone: Conceptualization, writing—review and editing
Megan Tam: writing— Conceptualization, review and editing
Samar Waqar: writing— Conceptualization, review and editing
Deonna Wardlow: writing— Conceptualization, review and editing
Megan Y. Roberts: Conceptualization, funding acquisition, resources, writing—review and editing, supervision.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-26927)
Patient-Centered Outcomes Research Institute, (grant number EACB-26927).
Declaration of Conflicting Interest
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Authors MGO, YB, GBA, SB, LL, RL, ERM, MT, SW, DW, MYR received financial support through the project funding (MYR: portion of salary supported through the project; authors 2–10: payment for work completed on the project). MYR is a full professor at Northwestern University. MGO is a Research Fellow at Drexel University. SB reports a partnership with All Neurotypes, LLC; contract work with Work Together NC, UCLA, UNC TEACCH; and serves as a research analyst for AKALAKA. SW is the founder of Kind Theory. Authors report advisory positions with the Autism Society of America (SB), TheraFriends Community Partnership (SB), Interagency Autism Coordinating Committee (MGO), Autistic Women and Nonbinary Network (MGO), KindTheory (MGO, SW), Institute for Exceptional Care (MGO, GBA), Massachusetts Developmental Disabilities Council (GBA), and Foundation for Divergent Minds (MGO).
Informed Consent
N/A
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References
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