Autism & Developmental Disabilities

teacher showing happy and sad faces to student with autism

Supporting individuals with developmental disabilities such as autism, as well as their caregivers and service providers, is central to the work of FPG. Understanding developmental trajectories and the impact of a developmental disability on the individual, family, and broader community informs both theory and practice. High-quality intervention across the age range can ensure that individuals with developmental disabilities and their families fully participate in their community in ways that are meaningful to them. FPG investigators have identified central features of high-quality intervention, such as family-focused programming, early childhood inclusion, and the use of identified evidence-based practices. They lead the field in translating scientific knowledge into practical information for teachers and service providers, and actively join their colleagues from implementation science in promoting adoption and use of effective intervention practices in schools, homes, and community settings.

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For the past 10 years, members of the autism team, including Ann Sam, Victoria Waters, and Sam Odom, at the UNC Frank Porter Graham Child Development Institute have provided Autism Focused Intervention Resources & Modules, offering evidence-based practices to support learners on the spectrum from birth to 22 years of age. To celebrate this decade milestone and April’s Autism Acceptance Month, the AFIRM team launched its new website this week.

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Despite the sharp increase in the number of studies focused on late diagnosis over the last 15 years, there remains no consensus as to what constitutes a late diagnosis of autism, with cutoffs ranging from infancy to middle adulthood. FPG Faculty Fellow Clare Harrop contributed to a systematic review which evaluated the field's current quantification of late diagnosis in autism, how the threshold for late diagnosis varies as a function of demographic and population factors, and trends over time.

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Victoria Waters, MEd, is an educational consultant at the UNC Frank Porter Graham Child Development Institute. Waters joined FPG's autism team 10 years ago and helped develop the AFIRM modules while earning her master’s degree in education. Now she continues to work on expanding and updating AFIRM in addition to working on other projects that help create evidence-informed tools and resources for educators and families.

Current Projects

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ACF Office of Child Care Disability Inclusion in Child Care

The purpose of this project is to deploy a comprehensive stakeholder engagement and program assessment strategy to support a deeper understanding of the current landscape of disability inclusion, along with unique challenges, opportunities, perspectives and relevant factors impacting states, tribes, and territories as well as children with disabilities and their caregivers.

AFIRM for Paraeducators: Paraeducators' Use of Evidence-Based Practices to Increase Goal Attainment for Students with Autism

The dual increases in the prevalence of students with autism needing special education services and the number of paraeducators providing instruction in special education had created a need for preparing paraeducators to use evidence-based practices (EBPs) with autistic students in educational settings. The AFIRM for Paraeducators (AFP) program is a professional development program for paraeducators to be delivered by special education teachers in authentic educational settings. The purpose of this project is to examine the promise of the AFP program, through a pilot randomized control trial (RCT), for increasing paraeducators use of EBP with high fidelity of implementation and resultant goal attainment by autistic students receiving instruction.

Black Parents' Ethnic-Racial Socialization Practices Among Young Black Children with Disabilities

According to the U.S. Department of Education (2018), among students ages 3 through 21 served in special education, less than one-fifth are Black/African American (17.7 percent), but Black/African American students with disabilities account for more than one third (36.6 percent) of individuals who experienced disciplinary removal. Ethnic-racial socialization (ERS) practices have been found to mitigate the effects of such discrimination on children’s development. Yet, little is known about what these practices may look like for Black children with disabilities as ERS practices have typically been studied among typically developing, able-bodied children. This mixed-methods study aims to explore: 1) What types of ERS practices, and how frequent, do Black/African American parents/caregivers engage in with their children? 2) What is the relation between parents/caregivers’ ERS practices and children’s academic engagement, school disciplinary, and mental health outcomes? 3) What are the purposes and goals of Black/African American parents/caregivers engaging in ERS practices among their children with disabilities? and 4) What are some challenges that arise for Black parents/caregivers who communicate ERS practices to their children with disabilities?

EMERGE: Early Markers of Expressive and Receptive Language Growth in Ethnically Diverse Autistic Toddlers

Spoken language is predictive of many positive life outcomes, such as employment, social interaction, play skills and more. But, researchers still don’t know why some children talk and others don’t, especially as it relates to historically marginalized and minoritized populations. A new study, EMERGE: Early Markers of Expressive and Receptive Language Growth in Ethnically Diverse Autistic Toddlers, seeks to change that.

Examining adaptive peer-mediated interventions for preschoolers with autism spectrum disorder and limited or no spoken language

Inclusive PreK STEM Playgroups: Empowering our Youngest Learners and their Caregivers for Confidence and Competence in STEM Learning

This project is grounded in a science education partnership between Kidzu Children’s Museum and FPG’s STEM Innovation for Inclusion in Early Education Center (STEMIE). The project will include sharing resources and spaces to develop and implement playgroups for pre-K children with a variety of abilities and their caregivers with specific STEM related goals and activities through the sequence of playgroups.

Parent-implemented treatment for repetitive behaviors in children with ASD: Using a novel telehealth approach to increase service access

Project EXPRESS: EXamining interventions to PRomote Executive function and Social Skills

The purpose of this study is to evaluate two group-based treatments: (1) the Program for Education and Enrichment of Relational Skills (PEERS), which targets social skills, and (2) Unstuck and On Target (UOT), which targets executive function skills. The interventions are two 45-minute sessions per week across 16 weeks and will be implemented by school-based staff in middle schools in North Carolina and Southern California (San Diego area).

Racism and Resilience Among Black Autistic Children and Caregivers

Persistent, and quite pervasive, racial disparities have been found between Black, autistic children and their white, autistic peers. These disparities range from notable inequities in the timeliness of diagnosis to receipt of substandard services to their under-representation in research studies. While key disparities have been documented, there is a need for increased attention on potential underlying drivers of these disparities that are rooted in the Black experience. We know from existing research on Black health and wellness that racism is linked to some poorer physical and mental health outcomes. This project will examine the impact of racism and resulting racial trauma on the mental health outcomes of Black parents of autistic children (ages 3 -9) as well as the downstream consequences that parental racial trauma has on child behavior and development.

Supporting Early Care and Education Providers In Early Intervention To Implement Evidence Based Practices for Toddlers with Autism and their Caregivers

The proposed study will employ several methodologies including single-case design and qualitative methods to explore processes and drivers necessary to support early intervention (EI) providers in using online modules with embedded coaching supports to: (a) increase their own knowledge and use of evidence-based practices (EBPs) and (b) support EI providers to coach caregivers to use EBPs. The study will examine factors that lead to effective EI services empowering caregivers of toddlers with autism to embed EBPs into their everyday routines and activities. We will collaborate with EI providers and caregivers of toddlers with autism to examine the extent to which online EBP modules with ongoing implementation support: •are perceived as useful and relevant to EI providers •effectively support EI providers and caregivers to embed EBPs with fidelity We also intend to: •determine if and how provider and caregiver use of EPBs impacts child coordinated joint engagement •explore provider and caregiver perceptions related to EBPs and implementing them By examining perceptions and outcomes related to implementing EBPs, the study may enhance the quality of EI professional practice and improve outcomes for children with autism and their caregivers.

Frank Porter Graham Child Development Institute

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