IES Blog

Institute of Education Sciences

Spotlight on FY 2023 Early Career Development Grant Awardees: Supporting Latine Transborder Caregivers and Their Young Children with or at Risk for Autism

NCSER continues its series spotlighting the recently funded Early Career Development and Mentoring Grants Program principal investigators with an interview with Ana Dueñas, assistant professor in special education at San Diego State University. Dr. Dueñas is conducting research aimed at improving outcomes for Latine transborder caregivers and their young children with or at risk for autism. We are pleased that this blog also honors Hispanic Heritage Month

How did you become interested in studying early intervention for Latine children on the autism spectrum?

Headshot of Ana Dueñas

As a first-generation Mexican cis-gender woman who was raised in a bicultural transborder community alongside the San Diego/Tijuana border, I learned to navigate a shifting identity—speaking English and Spanish fluently to feel accepted by both communities and managing schooling and housing across borders. Like many other children of Mexican immigrants, I served as a translator, social worker, and advocate for my parents. These experiences, along with my sensitivity to the unique needs of this population, inform how I approach community-engaged research. I am also very aware of how the biases that my education and training in special education and applied behavior analysis influence my approach to intervention research, particularly in light of the history of deficit-driven rhetoric and a medical model of disability in these fields. I aim to be mindful of the power differential that is often associated with higher education, social class, and researcher institutions in my interactions with the families I support.

My interest in building partnerships with Latine caregivers of children with autism began 10 years ago. Earlier in my career, I was a social worker for the California Regional Centers, a non-profit organization that provides services, advocacy, and support to individuals with developmental disabilities and their families. There I gained firsthand awareness of the behavioral health disparities faced by historically minoritized families (delayed diagnosis and access to culturally relevant services). Now, as a junior faculty member and researcher, I bring these experiences to my work and hope to form genuine relationships with the Latine community to better inform autism intervention research.

What are some of the unique challenges and needs of your study population?

I hope to understand these issues in depth more throughout this project. What we know from the literature about the Latine community more broadly is that they face significant disparities in access to timely diagnosis and treatment for their autistic children. This racial disparity is exacerbated in rural communities, or “service deserts” like the Imperial Valley of California, where this project is situated. The transborder community as a subgroup of the larger Latine community has very specific needs that may create a mismatch in evidence-based practices. Some points of mismatch are logistical and environmental—living and working across borders—which may lead to limited compliance, attendance, or engagement in intervention. Other points of mismatch may occur because Latine families may have a history of working with staff that lack cultural competence and therefore have few positive experiences receiving early intervention services. Further, though my project doesn’t focus on families who are undocumented, transborder families may be dealing with unique issues related to immigration status—threats of deportation, housing insecurity, and limited access to physical and mental healthcare. 

What broader impact are you hoping to achieve with your research?

Through my research, I hope to address the behavioral education disparities among marginalized populations, as they undermine the quality of life and opportunities for autistic children and their families, particularly among families exposed to vulnerable circumstances. My study addresses one small component of the many disparities that occur across a continuum from identification to treatment to improve the match between evidence-based interventions and the specific needs of marginalized individuals. Many interventions were developed with minimal input from ethnic and/or racially marginalized communities. Though there continues to be an implementation fidelity versus cultural adaptation debate, without sensitivity and responsiveness to the unique needs of communities, interventions may fail to be adopted. In my work, I begin with an assessment to ensure that the intervention is relevant to community needs and desires.

What advice do you have for other early career researchers?

Don’t give up. Understand and harness your value. Follow your instinct. Seek mentorship.

Ana Dueñas demonstrates passion and meaningful personal connection to her research. We are excited to follow her work and see what lies ahead in her academic career trajectory in special education.

This blog was produced by Emilia Wenzel, NCSER intern and graduate student at University of Chicago. Katherine Taylor (Katherine.Taylor@ed.gov) is the program officer for NCSER’s Early Career Development and Mentoring program.

Smooth Sailing Using the Neurodiversity Paradigm: Developing Positive Classrooms Experiences for Autistic Students

In honor of Autism Awareness Month, we’d like to highlight an IES-funded research project on autism spectrum disorder and discuss how the current framework of neurodiversity informs this research. In recent years, the neurodiversity paradigm has been an increasingly popular way of viewing autism and other neurodevelopmental conditions. Neurodiversity is a term coined in the late 1990s by Judy Singer to refer to natural human variation in neurotypes. Neurodivergent individuals diverge from the norm, usually with conditions such as autism, attention-deficit hyperactivity disorder, or dyslexia. Rather than focusing on deficits, this paradigm supports a strength-based view of these conditions while still acknowledging individual challenges. For this blog, we interviewed Dr. Jan Blacher and Dr. Abbey Eisenhower, principal investigators who created a professional development (PD) program supporting general education teachers of students on the autism spectrum. In the interview below, the researchers describe how their PD program works and how it uses the neurodiversity paradigm to strengthen relationships between autistic students and their teachers.

What is Smooth Sailing and what led you to develop it?

Headshot of Dr. Abbey EisenhowerHeadshot of Dr. Jan Blacher

Smooth Sailing is the nickname for our PD for general education teachers in kindergarten through second grade who have at least one student on the autism spectrum in their classrooms. The catalyst for the program was the findings from our previous project on student-teacher relationships, indicating that teachers are central to facilitating positive school experiences, especially for autistic students. Warm, positive student-teacher relationships are predictive of academic engagement and social adjustment.

The program provides coaching-based support for teachers, equips them with strategies for building strong relationships with autistic students, and enables them to expand on their students' strengths and interests in the classroom. Developed by educators, clinicians, and researchers in partnership with teachers and autistic individuals, Smooth Sailing uses an autism-affirming, neurodiversity perspective throughout the program.

What makes this program unique?                                                                                                                

Smooth Sailing recognizes the importance of relationships—especially student-teacher relationships—in making school a positive and welcoming place for students.

Our program prioritizes a neurodiversity perspective on autism: We recognize autism as a set of differences that are part of the diversity of human experience. In order to best support autistic students, we must provide an affirming context that embraces their strengths and differences. This approach contrasts with a deficit-based model, which focuses on changing children and their behaviors. The deficit model could impair relationships between students and their teachers, making academic engagement and social adjustment worse.

Finally, Smooth Sailing is unique for centering on autistic people as key contributors to shaping program content so that the program reflects the lived realities of autistic students.

What have you learned while developing and testing the Smooth Sailing intervention?

We have learned several important lessons:

(1) During the initial research for our intervention, findings indicated that only 8% of general education teachers in the study had received any professional training in autism. This provides a clear-cut mandate for more autism-focused training for these educators.

(2) After the intervention, general education teachers endorsed three key Smooth Sailing strategies for reaching out to their autistic students: (a) identifying interests, (b) celebrating talents, and (c) having one-on-one time to form stronger relationships. We learned that these simple strategies are ones every teacher can adopt to create more inclusive classrooms and cultivate stronger relationships with students, especially autistic students.

(3) Overall, teachers who received the Smooth Sailing PD experienced significant improvements in the quality of their relationships with autistic students, including higher student-teacher closeness and lower student-teacher conflict, compared to teachers who had not received the program. Thus, in addition to other positive outcomes for teachers and children, we learned that our brief program (12 hours over 4 weeks) was sufficient for moving the needle on the critical construct of student-teacher relationship quality.

How does respect for neurodiversity inform the Smooth Sailing intervention and your philosophies as researchers?

One key factor that has been transformative to the resulting Smooth Sailing program has been our close consultation with current and former autistic students. As part of developing the Smooth Sailing program for teachers, our research team interviewed many autistic adolescents and adults about their school experiences, their advice for teachers, and their opinions on making schools more affirming and inclusive. In addition, we closely engaged autistic adults as expert consultants during our program development process. These consultants advised on teacher-focused content, reviewed materials, and weighed in on program changes.

The rich information we learned from the interviews and intensive consultation substantially impacted the content of the resulting program. To offer one example, these interviews showed us the outsized power of a positive student-teacher relationship, even with just one teacher, in making school a bearable place for autistic students.

Because many autistic students describe their school experiences as ableist and marginalizing, our team's programming aims to disrupt these school problems by building strong student-teacher relationships and fostering teachers' understanding of autism through an affirming, neurodiversity-informed lens. By incorporating first-person perspectives of autistic students and adults in its creation and content, our programs affirm the lived realities of autistic students. 

What needs are still unmet for general education teachers working with autistic students?

We have heard from teachers and administrators at all K-12 levels—high school, middle school, and later elementary school—that they would like access to similar autism-focused PD programs targeted to the student age ranges they teach. We think that creating a school culture that affirms neurodiversity starts by fostering understanding between students and all school staff, not just primary classroom teachers.  

What's next for the Smooth Sailing project?

We hope to expand the Smooth Sailing PD program to the early childhood education context. Unfortunately, our research has shown that, by the time they enter elementary school, one out of every six autistic children has been expelled from a preschool or childcare program. Viewed through a social justice lens, this preschool expulsion is an educational equity issue.

Early childhood educators are key to improving these early school experiences. We believe that preschool and childcare educators can be catalysts in providing an inclusive environment by forming strong relationships with autistic and neurodivergent children. That said, most early childhood educators report having no professional training in autism, feeling underprepared to meet the needs of autistic children, and wanting more support for inclusion. We hope that programs like Smooth Sailing can be applied to support educators working with preschool-age children who are autistic or neurodivergent, many of whom are not yet diagnosed, so that their first school experiences can be enriching and inclusive.

Jan Blacher is a distinguished research professor in the School of Education and the director of the SEARCH Family Autism Research Center at the University of California, Riverside. Abbey Eisenhower is an associate professor in the Psychology Department at the University of Massachusetts, Boston.   

This blog was authored by Juliette Gudknecht, an intern at IES, along with Emily Weaver (Emily.Weaver@ed.gov), program officer at NCSER with oversight of the portfolio of autism grants.

Types of Communication for Persons with Autism

Headshots of Drs. Ganz, Pustejovsky, and Reichle In honor of Autism Awareness Month, we took a deep look into NCSER-funded research on augmentative and alternative communication (AAC) for students with autism spectrum disorder (ASD) and/or moderate-to-severe intellectual disabilities (ID) who have complex communication needs. Principal investigators Drs. Ganz, Reichle, and Pustejovsky discussed their research on AAC (such as communication board or speech output device), which provides an alternative means of communication for persons who are nonverbal or minimally verbal and ensures they have the opportunity to communicate their wants and needs. This research team’s current IES project examines treatment intensity factors (how often or how long an intervention takes place) related to teaching AAC use. In the interview below, they discuss their current project and how it builds upon their previous research on AAC interventions.

What is the purpose of your current project?

Individuals with ASD and/or ID who have complex communication needs typically require intensive, costly, and individualized educational interventions to develop communication. However, there is little information to guide parents and instructional personnel in selecting the most effective dose and duration of treatment. Similarly, there is a lack of guidance about when and how treatment integrity and strategies for generalization (use in various contexts) and maintenance (sustaining treatment over time) affect treatment outcomes. The purpose of this current project is to examine the effects of various treatment intensity parameters on expressive communication outcomes for students with ASD and/or ID through a meta-analysis. This investigation aims to guide the development of protocols for instructional personnel and parents so they can implement efficient, acceptable, and effective treatment for improving communication for these students.

What motivated you to conduct this research?

Educational interventions to treat ASD can be costly. This can lead to disparities wherein wealthier families can access high-quality services while most Americans cannot. Social services—including educational and healthcare services—are typically underfunded, impeding the provision of quality services for this population. For example, behavioral experts have recommended 25-40 hours per week of intensive, one-on-one educational and behavioral services for young children with ASD. However, there has been limited research aimed at comparing the relative efficacy of interventions based on various factors associated with treatment intensity. Not all individuals will need the same level of treatment intensity, but more research is needed to understand how treatment intensity needs can be differentiated by student characteristics, intervention types, and service context. Interventions that are efficient and tailored to individual student need may allow them to be more accessible to a wider range of families. In addition to studying these factors, this project aims to develop a treatment integrity template that can be used by others in determining appropriate treatment intensity levels for a range of interventions and populations. Such investigations hold promise for significant improvements in intervention efficiency, potentially giving schools ways to effectively serve more individuals.

Our goal is to provide information to family members and practitioners to enable them to better individualize AAC interventions, allowing them to match treatment intensity needs to individual characteristics, precursor skills, background, and consumer preferences and needs. By doing so, we can provide guidance for the allocation of services where needs are greatest.

How does this project build upon your previous research in AAC?

In 2021, we completed a research project that examined AAC interventions using similar meta-analytic methods with the same population as those studied in our current research. In that project, we focused on the ways in which instructional features and contexts are associated with learner performance. We found that AAC interventions are commonly implemented in school, home, and community settings with no significant differences in learner outcomes based on the setting. This tells us that AAC use does not need to be limited to one setting and can include caregivers and family members in this process. Across studies, a wide range of instructional strategies were used to teach AAC use, with behavioral and naturalistic strategies the most common.

Similarly, there was a range of teaching formats used during instruction. We looked at instructor- versus child-led, contrived versus naturalistic, and one-on-one versus group contexts, with structured approaches (one-on-one instruction, instructor-led, and contrived learning opportunities) the most common. However, just as with settings, no significant differences in outcomes were observed across instructional strategies or formats, indicating that there is no “one-size-fits-all” approach to AAC use and it can be individualized to the needs of each learner. The current grant offers a close examination of treatment intensity factors—such as how many sessions of intervention per week, how many minutes per session, and how many communicative opportunities the learner has during each session—and their potential effect on learner performance. Overall, the study asks, “what is the association between AAC dosage and successful learner outcomes?”

What can your research tell us about the relationship between education outcomes and AAC use for students with ASD and ID

We are hopeful that it will provide clarity for successful intervention protocols by specifying aspects of treatment intensity. Factors of treatment intensity and related intervention characteristics we are looking at include dosage rate, duration, form, and frequency; total intervention duration; degree that the treatment is implemented with integrity; and implementation of generalization and maintenance strategies. Additionally, we will explore possible associations between key skills that are important for students with ASD and ID to develop (such as imitation and matching) and choice of treatment intensity parameters.

Communication is the basis for most other learning, including social skills, literacy, and other functional life skills; thus, improving and increasing communication production and comprehension for individuals with ASD and ID who are minimally verbal or nonverbal will build a foundation for further academic and functional progress.

What do families and caregivers need to know about AAC use?

We believe that families should encourage communication in a range of modalities, including aided AAC, but also natural gestures, speech, and speech approximations. Although there is a myth that AAC use discourages speech, research has shown that individuals often learn speech simultaneously with AAC learning. Further, by increasing fluent communication, frustration and challenging behavior are often decreased. Communication in all forms must be targeted across people, settings, and vocabulary to provide minimally verbal and nonverbal individuals with opportunities to learn and use new language.

We hope to provide information to family members and practitioners that better enables them to individualize AAC interventions, allowing them to match treatment intensity needs to individual characteristics, precursor skills, background, and consumer preferences and needs. By doing so, we will be able to target services where needs are greatest and preserve resources for those in most need.

Many thanks to Drs. Ganz, Reichle and Pustejovsky for sharing their work with our readers!

Joe Reichle serves as the PI for this project and is a former Department Chair and current Professor Emeritus in the Department of Communication Disorders at the University of Minnesota.

J. Birdie Ganz is a professor of Special Education at Texas A&M University and serves as current Project Director and co-PI for this project.

James Pustejovsky is an associate professor in the School of Education at the University of Wisconsin-Madison and serves as co-PI for this project.

This blog was written by Shanna Bodenhamer, virtual student federal service intern at IES and graduate student at Texas A&M University. She also serves as a research assistant on this project.

 

Empowering the Families of Black Autistic Children through Culturally Responsive, Community-Based Interventions

In recognition of the IES 20th anniversary and Black History Month, we interviewed Dr. Jamie Pearson, an assistant professor of special education at North Carolina State University. Jamie is developing and refining a community-based parent-training intervention, FACES (Fostering Advocacy, Communication, Empowerment, and Support), designed to strengthen Black parents' capacity to access and use special education services and improve the communication and behavior outcomes for their autistic children.

How have your background and experiences shaped your scholarship and career in studying diversity, equity, and inclusion in education?Headshot of Jamie Pearson

My early career experiences were as a behavioral interventionist for autistic students in home, school, and community settings. While providing direct support, I noticed that many of the students I supported were white and most came from middle- and upper-class socioeconomic backgrounds. These experiences led me to question whether there were disparities in diagnosis, misdiagnosis, and treatment/service access for children of color, particularly Black autistic children. These early questions were the catalysts for my scholarship.

As a doctoral student, I began exploring Black families’ experiences supporting autistic children. I became very passionate about investigating (a) disparities in the identification of autism and service access for Black autistic students and their families, (b) the implementation and evaluation of culturally responsive family advocacy interventions, and (c) strategies for strengthening partnerships between historically marginalized families and schools. Based on the findings from my early exploratory research, I developed and piloted the FACES intervention.

What advice would you give to emerging scholars from underrepresented, minoritized groups that are pursuing a career in education research?

When I began this work, I distinctly remember a faculty member asking me why it was important to look at the intersections of autism and race/ethnicity. They genuinely didn’t understand. I was passionate about my work, and even though not everyone understood the implications of these disparities at the time, they learned from my early exploratory work. It is important for underrepresented scholars to know that you have a seat at the table! Your knowledge, experiences, and contributions are needed in education research. We need more scholars of color, disabled scholars, and LGBTQIA+ scholars who reflect the populations with whom we conduct educational research and whose diverse perspectives impact how we engage in and interpret education research. My three pieces of advice in a nutshell would be find your passion, follow your passion, and know that you are deserving of a seat at the table. Pull up a chair if you have to!

Tell us about your current IES project focused on FACES. Do you have any updates or preliminary findings you would like to share about supporting Black children with ASD and their families?

The purpose of my IES Early Career project is to develop and test the promise of FACES when delivered by community-based parent educators. So far, two of my doctoral students and I (all Black women) have been the only people to facilitate FACES. To scale the intervention up, we need to design a training for facilitators to know how to implement FACES, train the facilitators, and then test its promise when delivered by facilitators in community-based settings. We are partnering with two community-based organizations who provide parent advocacy and support to achieve these goals.

During phase 1 of this project, we conducted a content analysis of our community partners’ data to better understand the extent to which Black families raising autistic students were seeking support for their child. These findings indicate that Black families are most often seeking specific therapeutic services (such as speech therapy) for their child, followed by school-related support and behavioral support. We then conducted focus groups with community-based providers to better understand their experiences and needs supporting Black families. Findings from these focus groups indicated that community-based providers are serving multiple roles—feeling as though they serve as therapist, teacher, advocate, and more with some families—with limited resources. These findings, combined with emergent themes around racial responsiveness and racial sensitivity, are helping us tailor the train-the-trainer components of the project. For example, we are building a section into our training about the implications of colorblind ideology and how to address facilitator biases. Facilitators will need to complete this training and demonstrate their understanding of the content before they move forward with facilitating the FACES intervention.

What do you see as the greatest research needs to improve the relevance of education research for diverse communities of students and families?

Much of the research around autism disparities has focused on quantifying racial disparities, yet little work has been done to reduce these disparities. Black families raising autistic children need access to parent education and advocacy training to combat the barriers they face in service access and utilization and find spaces where they feel welcome. I strongly believe that community-based parent education sets the foundation for empowering families that have been historically marginalized. We’ve seen FACES families go back to their communities and educate their friends and families about autism, connect them to services, and even create their own support groups. When families have more knowledge about autism and autism services, they feel more empowered. When they feel more empowered, they are better equipped to advocate. This is why it’s critical to engage in this work with historically marginalized families at the community level.

However, families of color still face many systemic barriers, so we still have a lot of work to do with educators and healthcare providers to ensure they are engaging in culturally responsive practices that facilitate effective partnerships with marginalized families. We need both empowered families and culturally responsive providers to effectively address these disparities.

The IES 20th anniversary campaign focuses on the future of IES as well as the most notable IES accomplishments. Follow the campaign on IES social media channels and our website. Join the conversation by using #IESat20 on social media.

This blog was produced by Akilah Nelson, program officer for the National Center for Special Education Research.

Interventions for Autism Spectrum Disorder in Early Childhood: Preliminary and Long-Term Impacts

The prevalence of children identified as having autism spectrum disorder (ASD) has increased steadily in the last 20 years. Early identification and intervention is important, a point that is underscored by the CDC’s campaign Learn the Signs. Act Early. To recognize April’s Autism Awareness Month, NCSER is highlighting two projects supporting the capacity of parents and educators to intervene in children’s early development.

Assisting Early Interventionists in Facilitating Parent Mediation of Learning

Photo of Hannah SchertzPhoto of Kathleen Baggett

Researchers Hannah Schertz (left, Indiana University) and Kathleen Baggett (right, Georgia State University) have developed a framework to improve the social communication skills of toddlers showing signs of ASD with a system that guides early interventionists (EIs) to support parents. The program, Supporting Early Interventionists of Toddlers with Autism to Build Family Capacity (SEITA), aims to help EIs to work with parents as they integrate interventions into natural interactions with their children. EIs learn to guide parents in understanding when their child is engaging in social communication and in implementing learning strategies to enhance these competencies during parent-child interactions. More specifically, EIs guide parents in applying four mediated strategies to promote engagement in learning: focusing, giving meaning, encouraging, and expanding. For example, one strategy they use is to facilitate guided reflection on a just-recorded video of parent-child interactions.

As the researchers test the promise of the intervention, they report that EIs have conducted the intervention with fidelity in both home-based and telehealth contexts. They have found that parents in the study demonstrated clear improvements in their use of at least two mediated learning strategies and have been able to implement intervention practices with fidelity when working with their children. The researchers also track the children’s progress on social reciprocity, joint attention, positive social behavior, and social play, and results will be analyzed when data collection is complete.

Investigating the Long-Term Benefits of an Elementary Intervention

Photo of James P. Donnelly, Marcus L. Thomeer, Christopher Lopata, and Jonathan D. Rodgers
The IAR team (from left to right): James P. Donnelly, Marcus L. Thomeer, Christopher Lopata, and Jonathan D. Rodgers

As children age into elementary grades, their primary site of intervention becomes the school. In 2008, NCSER funded the development of the comprehensive school-based intervention (CSBI) to support the social competencies of children with high functioning autism spectrum disorder (HFASD). This multi-prong approach includes interactive computer instruction to teach children to recognize emotions, social skills groups, therapeutic peer group activities to practice social skills, daily behavioral notes, and monthly parent training. A 2013 NCSER-funded randomized controlled trial of CSBI found that students with HFASD who participated in CSBI improved significantly in measures of social cognition, social-communication skills, and ASD symptoms compared to students with HFASD who received typical instruction.

To assess the intervention’s ability to impact long-term student development, Christopher Lopata and his colleagues James Donnelly, Marcus Thomeer, and Jonathan Rodgers (Canisius College) are following up on the initial efficacy trial to study the middle and high school students who participated in CSBI in elementary school. They are measuring student social cognition, social communication skills, ASD symptoms, and academic achievement at the beginning and end of two consecutive school years to examine lasting impacts of the CSBI program. Although data are still being analyzed from this project, it is notable that because data collection occurred as the COVID-19 pandemic caused school shutdowns, the PIs were able to examine the potential effects of stay-at-home restrictions on these students. There have been widespread concerns that disruptions to routines, curtailed social opportunities, and removal of support services associated with shutdowns could have deleterious effects on children with ASD. However, Lopata and colleagues found no significant differences between data collected before stay-at-home restrictions and data collected 4 months after the restrictions on ASD symptoms, adaptive behaviors, or social communication.

NCSER will continue to share the final results of these studies, as well as additional research focused on supporting children with ASD, in the future.

Written by Julianne Kasper, Virtual Student Federal Service Intern at IES and graduate student in Education Policy & Leadership at American University, and by Emily Weaver (Emily.Weaver@ed.gov), NCSER program officer who oversees ASD grants.