Inside IES Research

Notes from NCER & NCSER

Early Intervention and Beyond: How Experience with Young Children and Special Education Motivated a Career in Autism Research

In honor of Autism Awareness Month, we would like to share an interview with Dr. Stephanie Shire about her Early Career Development and Mentoring project. Dr. Shire, associate professor of Early Childhood Special Education at the University of Oregon, focuses her current research on young children with autism and their families. In this interview, she discusses this project as well as her prior experiences in early intervention and special education and advice for other early career researchers.

Please tell us about your IES Early Career project.

Headshot of Dr. Stephanie Shire

My IES Early Career project is titled LIFT: Leveraging Autism Interventions for Families through Telehealth. The idea behind this project—exploring the technology-assisted delivery of an established evidence-based, in-person, one-on-one, caregiver-mediated social communication intervention—began even prior to the pandemic, before the field had to shift service delivery to online family-mediated services for young children with autism. The project focuses on helping caregivers use the existing intervention strategies to advance their children’s social communication and play skills. We’re not changing or testing the established intervention for the children, but rather the way in which we support caregivers in their learning.

The project is being conducted in partnership with early intervention and early childhood special education community practitioners and leaders. Our partners were fundamental in the development and revision of the online intervention program, which took an intervention manual of several hundred pages designed for clinicians and turned it into a series of brief online modules that families can read or listen to at their own pace. Our partners also shaped the implementation strategies that we are now testing in a pilot randomized trial. Families enrolled in the trial are being served by their local early intervention and early childhood special education practitioners in their home communities in Oregon.

How did you become interested in research on interventions to help young children with autism?

I was introduced to young children with autism as a high school student volunteering in a hospital playroom and as a special education classroom volunteer in my first year as an undergraduate student. In both cases, these preschool and school-age children had few or no words. I watched the practitioners try to connect and engage with the children with mixed success. I then spent the next several years as an undergraduate student working as an in-home intervention aide delivering services to young children with autism, many of whom had few or no words. I found myself failing to support the children’s progress, particularly with their communication skills. My desire to do more for these children prompted me to pursue additional resources and learn more about practices to better support them. This led me on a path to graduate school, first at the master’s level and then doctoral-level training, focused on intervention science to learn more about the development and testing of interventions to maximize communication development for young children with autism.

What do you find most rewarding about conducting research with young children with autism and their families?

Children and their families are at the heart of all my research team’s projects. Celebrating the moments when a child shows us a new idea in play, makes a joke, or points to something to share it with us lights up my entire lab! The greatest reward is seeing children shine and experience victories, big and small.

What are your next steps in this line of research?

We’re taking what we’re learning now, as well as the training that I’ve received in implementation science, to work on the next steps in this research project. We need to understand how to personalize implementation strategies for caregivers to help more families advance their children’s social communication skills through play and daily activities. Because this intervention has an adaptive component, we are now looking at combining sequences of supports for caregivers based on their individual progress halfway through implementing the intervention.

What advice do you have for other early career researchers?

Persist. In special education and early intervention, we are still acutely feeling the effects of the pandemic on a system that was already experiencing many challenges. There will be bumps along the way, but children show us every day that they can keep accomplishing small victories even in the face of obstacles. Let’s follow their lead and do the work in partnership with their caregivers and educators to keep building toward big victories for all children and their families. 

Thank you, Dr. Stephanie Shire, for sharing your early career research experience!

This blog was produced by Skyler Fesagaiga, a Virtual Student Federal Service intern for NCSER and graduate student at the University of California, San Diego. KatieTaylor, NCSER program officer, manages grants funded under The Early Career Development and Mentoring Program Program.

 

The Impact of Parent-Mediated Early Intervention on Social Communication for Children with Autism

A key challenge for children with autism is the need to strengthen social communication, something that can be supported early in a child’s development. Dr. Hannah Schertz, professor at Indiana University Bloomington’s School of Education, has conducted a series of IES-funded projects to develop and evaluate the impact of early intervention, mediated through parents, for improving social communication in toddlers with or at risk for autism. We recently interviewed Dr. Schertz to learn more about the importance of guiding parents in the use of mediated learning practices to promote social communication, how her current research connects with her prior research, and what she hopes to accomplish.

Why is parental mediation in early intervention important for very young children with autism? How does it work and why do you focus this approach on improving children’s social communication development?

Headshot of Hannah Schertz

The intervention targets social communication because it is the core autism challenge and it’s important to address concerns early, as signs of autism emerge. Research has found that preverbal social communication is related to later language competency. Our premise is that this foundation will give toddlers a reason to communicate and set the stage for verbal communication. More specifically, joint attention—one preverbal form of social communication—is the key intervention target in our research. It is distinct from requesting/directing or following requests, which are instrumental communications used to accomplish one’s own ends. Joint attention, which takes the partner’s interests and perspectives into account, is an autism-specific challenge whereas more instrumental communication skills are not.

Our research team incorporates a mediated learning approach at two levels—early intervention providers supporting parents and then parents supporting their toddlers. The approach is designed to promote active engagement in the learning process and leverage the parent’s privileged relationship with the child as the venue for social learning. Early intervention providers help parents understand both the targeted social communication outcomes for their children (intervention content) and the mediated learning practices (intervention process) used to promote these child outcomes. As parents master these concepts, they can translate them flexibly into a variety of daily parent-child interactions. This understanding allows parents to naturally integrate learning opportunities with child interests and family cultural/language priorities and preferences. Over time, their accrued knowledge, experience, and increased self-efficacy should prepare them to continually support the child’s social learning even after their participation in the project ends.

How does your more recent work, developing and testing Building Interactive Social Communication (BISC), extend your prior research examining Joint Attention Mediated Learning (JAML)?

Both JAML and BISC address the same goal—supporting social communication as early signs of autism emerge. In JAML, researchers guided parent learning directly while parents incorporated social communication into interaction with their toddlers. BISC extends the intervention by supporting community-based practitioners in facilitating parent learning rather than parents learning directly from the research team. BISC also added a component to address cases in which parents identify child behaviors that substantially interfere with the child’s social engagement.

You recently completed a pilot study to test a new professional development framework for supporting early intervention providers in implementing BISC. Please tell us about the findings of this study. What were the impacts on the early intervention providers, parents, and toddlers?

We tested an early version of BISC to study its preliminary effects on early intervention provider, parent, and child outcomes for 12 provider/parent/child triads. In effect size estimates derived from single-case design data, we found large effects for early intervention provider fidelity (for example, mediating parent learning, guiding parents’ reflection on video-recorded interaction with their toddlers, and supporting active parent engagement) and parent application of mediated learning practices to promote toddler social communication. We also found large effects on child outcomes (social reciprocity, child behavior, and social play) and a small effect on joint attention.

As you begin your larger-scale trial to examine the efficacy of BISC on provider, parent, and child outcomes, what impact do you hope your work will have on the field of early intervention generally and the development of social communication in children with autism more specifically? 

Approximately 165 community-based early intervention practitioners will have learned to support parent learning through direct participation or as control group participants who receive self-study materials. These providers will be equipped to bring this knowledge to their future work. We anticipate that practitioners will experience their implementation role as feasible and effective. Ultimately, toddlers with early signs of autism will have greater access to early, developmentally appropriate, and family-empowering early intervention that directly addresses the core social difficulty of autism. Forthcoming published materials will extend access to other providers, offering an intervention that is more specifically tailored to the needs of very young children with social communication challenges than other approaches.

Is there anything else you would like to share/add regarding your projects? 

I would like to thank my colleagues and project co-principal investigators (Co-PIs) for their expertise and contributions to this work. For our current BISC efficacy project, Co-PI Dr. Patricia Muller (Director of the Center for Evaluation, Policy, and Research) is leading the randomized controlled trial and cost-effectiveness study, and Co-PI Dr. Jessica Lester (professor of Counseling and Educational Psychology) is overseeing the qualitative investigation of parent-child interactions using conversation analysis to explore potential influences on child outcomes. Kathryn Horn coordinates intervention activities, Lucia Zook oversees operational and assessment activities, and Addison McGeary supports recruitment and logistical activities.

This blog was authored by Skyler Fesagaiga, a Virtual Student Federal Service intern for NCSER and graduate student at the University of California, San Diego. The grants in this connected line of research have been managed by Amy Sussman (PO for NCSER’s early intervention portfolio) and Emily Weaver (PO for NCSER’s autism research portfolio).

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 DueƱas

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.