Editor's note: This story is from the Penn State College of Education's fall 2024 magazine.
UNIVERSITY PARK, Pa. — Penn State College of Education faculty members are exploring the role of early intervention for students with autism spectrum disorder (ASD) and related intellectual and developmental disabilities (IDD) in the context of using parent/caregiver support. Their goal to aid children’s developmental journey and learning about the strengths and challenges that families with intersecting identities experience in advocating for their children.
Early intervention to reach full potential
Richard Kubina, professor of special education, has dedicated his career to helping teachers, behavior analysts and other professionals achieve positive outcomes through effective teaching and measurement of behavior. He said he sees early intervention as a game-changer for individuals with autism and related IDDs.
“Evidence supports that early intervention can help ASD people reach their full potential by helping them function in society and excel in school,” he said. “Accepting people with differences is a way to have a flourishing society because neurodiverse people bring something unique to the table.”
According to the National Institutes of Health (NIH), “Research shows that early diagnosis of and interventions for autism are more likely to have major long-term positive effects on symptoms and later skills.” The NIH recommends that interventions occur as early as 2 or 3 years of age, as evidence shows that some children with autism who receive early intervention may have better outcomes.
Advocating for students with disabilities can occur in many different contexts and take on numerous forms, Kubina said. Advocacy can take the form of services such as speech/language pathology, occupational therapy and applied behavior analysis — services mostly covered by health insurance. In a school setting, he added, advocacy typically manifests as a multi-disciplinary team that includes parents, teachers, principals and occupational therapists. While having that unified front is important, Kubina said, it doesn’t necessarily account for all of the students’ needs.
“Does this student qualify for services out of school?” Kubina asked. “Being an advocate is important because you would like to think your child’s needs will be advocated for, but special education is expensive.”
According to Kubina, current prevalence rates tracked by the Centers for Disease Control and Prevention show 1 in 36 children has been identified as having ASD, yet there are less than 60,000 board-certified behavior analysts (BCBAs) in the U.S. available to provide critical applied behavioral analysis (ABA) therapy to this population — with significant disparities in rural and underserved communities. ABA therapy, which is a therapy based on the science of learning and behavior, considered by special education rseasrchers to help children with ASD achieve the best outcomes, Kubina said.
In recent years, Kubina said, special education researchers have begun to see more innovations intended to support the deployment of ABA therapy. As Kubina found in a 2022 study in Behavioral Interventions that he co-authored, students aided by video modeling — a teaching method that uses a video recording to demonstrate a skill or behavior that a student can then learn and imitate — made substantial improvements over their baseline performance.
Since autism occurs on a wide spectrum with light-to-severe symptoms, Kubina said, parents of children with ASD should take the initiative to ensure that their children are receiving support that fits their circumstances. He also advised that they stay up to date on school policies that affect their children.
“You can be at a disadvantage if you don’t understand the rules and the school doesn’t inform you of services,” he said. “There are many parental support groups where parents can relate to other parents and share experiences/advice.”
Kubina emphasized that for parents of children with autism whose needs are more comprehensive, skills not taught in traditional school settings are also paramount, such as how to deal with first responders. Kubina pointed to a University of Virginia study that demonstrated individuals with autism are more likely to encounter emergency personnel due to being at increased risk of requiring de-escalation from a meltdown, getting lost and needing help being found or getting into trouble during social interactions. Another study, published in Emergency Medicine, found caregivers in Ontario, Canada, reported 13% of their autistic children used at least one emergency service in a two-month period.
“Depending on where your child is on the autism spectrum, it’s important that you teach your children how to deal with first-responders,” Kubina said. “How do you respond to firefighters, police, EMTs?”
Parental advocacy through the lens of intersectionality
Lydia Ocasio-Stoutenburg, assistant professor of special education, approaches the topic of parental advocacy in special education from the standpoint of mitigating the role of systemic inequities and attitudinal biases by valuing family voices. She also examines the compounded inequities and biases experienced by multiply marginalized families, whose efforts do not fit the so-called traditional model of what parental advocacy should look like.
“My focus is to empower families, to recognize the strengths of families and what they bring to the table, in addition to serving as a co-advocate for them,” she said.
Ocasio-Stoutenburg examines parent advocacy through a lens of intersectionality, a social theory described by Black feminist scholars and activists such as Kimberle Crenshaw and Patricia Hill Collins that examines how oppression is compounded for people with multiple and historically marginalized identities. Ocasio-Stoutenburg said disabled students of color with disabilities are continuously subjected to harm, disproportionate labeling, reduced opportunities and lowered expectations in schools. Those issues are compounded by the complex bureaucratic processes that families are expected to navigate, she added.
“Providers, school personnel, and even community members hold such low and deficit-based views of disabled people of color, as well as their caregivers,” she said.
In an article published in 2021 in Research and Practice for Persons with Severe Disabilities, University of Miami professor Beth Harry and Ocasio-Stoutenburg explained that parent advocacy in special education is governed by school district policies under the umbrella of the Individuals with Disabilities Education Act (IDEA). IDEA, according to the U.S. Department of Education, is “a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.” However, Ocasio-Stoutenburg said, individual socioeconomic circumstances often prevent families of color from full participation in utilizing these systems to advocate for their children.
For example, Ocasio-Stoutenburg said, families experiencing access barriers to transportation and child care, or who have unyielding work schedules may not be able to attend impromptu school meetings that involve their children.
“While these are often viewed as parental uninvolvement, they are often due to the narrow parameters for which participation is expected,” she said. “What are the ways these families can be collaborated with, their voices amplified and their input valued?”
Ocasio-Stoutenburg said she has found that community-based research and engagement that doesn’t necessarily occur on school grounds has been successful in creating sustained partnerships with families and communities. In her book, “Case Studies in Building Equity Through Family Advocacy in Special Education: A Companion Volume to Meeting Families Where They Are “ which details the advocacy experiences of 10 families, she and her co-author Beth Harry, professor emerita of special education at the University of Miami, conceptualized the role of “co-advocate” with families of color — a person who helps to collaboratively construct developmentally appropriate goals for children that align with the families’ values and culture. Ocasio-Stoutenburg works to extends those efforts, identifying as a researcher and co-advocate for caregivers.
“The kind of work I do is intentional in that it involves people, families and communities in the research design,” she said. “I make sure people are involved from the beginning and help create the kind of research they want to be a part of. My goal is to create sustainable relationships and repair the harm that has been done to people within multiply marginalized communities.”