Montreal’s Summit School is preparing for the upcoming SCERT Conference 2024 on November 15, where one of the keynote speakers will be Dr. Len Abbeduto, a pioneering researcher in language development for individuals with neurodevelopmental disorders. Dr. Abbeduto, who serves as the director of the UC Davis MIND Institute, has focused much of his career on understanding the complexities of language challenges in conditions like Fragile X syndrome and autism. His keynote will address evaluation techniques for treatments, highlighting both the latest research advancements and the importance of collaboration across disciplines to improve language and communication outcomes.
In a pre-conference interview with former CTV news anchor and autism parent Paul Karwatsky, Dr. Abbeduto shared valuable insights into his research, the challenges families face, and the evolving landscape of treatments for neurodevelopmental conditions. Here’s a closer look at their conversation.
Paul Karwatsky: Dr. Abbeduto, you've been at the forefront of research in language development in neurodevelopmental conditions. What initially drew you to focus on language development in these populations?
Len Abbeduto: Early in my career, I was really interested in language development and language challenges, largely because if you think about the typical day in your life or a child’s life, language is everywhere. If you have trouble with language, you're going to have trouble with social relationships, learning in school, and navigating the world. So much of the curriculum is presented either orally or in written form. And in terms of just getting around and knowing where you’re going, language is essential. So, to the extent that you have challenges in that area, you’re going to be impacted in your ability to be included in the world. That foundational role of language is what got me interested in the field.
Karwatsky: I can relate, as I have two children on the spectrum. My daughter, in particular, experiences speech limitations, which is always on my mind. How has our understanding of speech issues evolved over the last few decades? Have there been any notable changes in how we approach it?
Abbeduto: There hasn’t been a major paradigm shift, but there’s a stronger focus now on not just diagnosing language challenges but also providing treatments to support better outcomes. This has been crucial. Another relatively recent change, especially in the field of autism, is the focus on people with minimal spoken language, sometimes labeled minimally verbal. Historically, they’ve been neglected in both research and treatment. So, the biggest changes have been in focusing on treatment to support language and making sure we address the full range of challenges, both in terms of research and clinical services.
Karwatsky: Has treatment for language challenges improved, or is it something we're only now beginning to address?
Abbeduto: The biggest changes in language treatment have been the validation of certain interventions that support language and communication development, particularly in children with neurodevelopmental conditions. For example, the Early Start Denver Model, pioneered by my colleague Sally Rogers and Gerry Dawson, doesn’t solely focus on language but incorporates it as an essential part, and they’ve shown in multiple studies that it improves outcomes in language and social functioning. Similarly, the Jasper model at UCLA is well validated, especially for kids with less developed language abilities. In our research, we’ve also looked at parent-implemented interventions—giving parents tools so they can essentially become their child’s speech-language clinician. Parents know their children best and spend the most time with them, so empowering them can be really helpful across a variety of conditions.
Of course, there’s still much work to be done, and some people are looking at medications or clinical trials to support language and minimize challenging behaviors. But access is a significant issue, and even when we have well-validated treatments, ensuring equitable access to these options is a challenge. That’s something I’ll address in my keynote and secondary session, emphasizing the importance of diversity in research samples and equitable access to support.
Karwatsky: What are the main barriers preventing the faster translation of research findings into accessible clinical interventions?
Abbeduto: On the research side, we often develop interventions in a university health system or research-based clinic with lots of resources and PhDs delivering the treatment. That’s often not the reality on the ground, where resources are limited. So, we need to modify what we’ve studied to work in real-world settings. Implementation science is pushing us to consider broad-scale implementation from the start.
Another challenge is systemic. People from historically marginalized groups may feel unwelcome in research or academic medical centers, sometimes because they have the “wrong” type of insurance or lack insurance. Researchers also often lack connections to these communities, and those conducting research or running clinics aren’t always diverse in terms of race, ethnicity, language, or culture, making it hard for marginalized groups to feel they’ll be understood and respected. Equity and access are critical issues. At the MIND Institute, we’ve realized that if barriers prevent us from helping all children and families, we need to rethink our approach. Equity and access are essential.
Karwatsky: You’ve spoken about the role of caregivers in treatment. How has the caregiver’s role evolved in your research over time?
Abbeduto: Initially, our research focused on describing and understanding language challenges in individuals with Fragile X syndrome, Down syndrome, or autism. Parents and families were mainly just participants who brought children in and signed consent forms. But as we got to know these families, we saw their commitment and the many challenges they faced, from lack of information to struggling with schools to secure necessary services, to stress within the family due to challenging behaviors. We realized that you can’t fully understand one person without considering their context, and the family context is crucial. So, we shifted to focusing on caregivers, the challenges they face, and the tools we could give them to optimize their children’s development.
This shift has made our research more impactful and more enjoyable, as we build partnerships with these families. There’s also a practical aspect: if you give parents tools within a study, they can continue using them long after the study ends. I worry, too, that professionals sometimes make parents feel like they have no role, that only professionals can help their children. That’s a missed opportunity. We want parents to know we’re partners in this, with complementary roles. Now, parents are truly our partners, and we’re committed to working together.
Karwatsky: For those unfamiliar with your work, what are some of the key insights your research has brought to the field?
Abbeduto: The biggest insight is that there’s tremendous variability in language challenges, even among individuals with the same diagnosis. There isn’t a single answer to improving language and communication for all autistic individuals or those with Down syndrome or Fragile X syndrome. We need to study this variability and develop adaptable treatments across conditions and life stages.
We’ve also found that language challenges look different across neurodevelopmental conditions. So, finding one “right” language intervention isn’t feasible. We need multiple adaptable options across different profiles and life stages. Another focus of ours is on developing sensitive measures of language and communication. In Fragile X syndrome, for example, dozens of clinical trials for medications have often yielded disappointing results, partly because we didn’t have suitable measures to detect meaningful change. Developing validated measures helps us truly assess the effectiveness of medications or interventions.
Karwatsky: You mentioned using technology in your work. How is technology helping to increase access to assessments and interventions?
Abbeduto: We’re trying to use technology for assessments and interventions to address issues of equity and access. In our parent-implemented language interventions, for instance, we’re increasingly conducting these through Zoom and other video platforms, which means parents don’t need to travel to us. We can coach them in real-time, monitor their progress, and even administer some outcome measures remotely with their support. Technology can remove some barriers to research participation and access to clinical care.
Karwatsky: Evaluation techniques for treatment will be a topic of your keynote. What do you consider the most critical components of a robust evaluation technique for neurodevelopmental disorders?
Abbeduto: First, any measure we develop must measure what we intend and be consistent. It must also be sensitive to change when it happens. Another critical aspect is ensuring that these measures relate to an individual’s real-life experiences. Intelligence tests, for example, don’t always predict how a person navigates the world, sometimes overestimating or underestimating their challenges.
In language research, we often assume that if we show a language improvement, it will positively impact the person’s life, but we rarely test this assumption. Establishing connections between our research and real-world activities is essential. For instance, we look at whether language scores in our measures predict real-life outcomes like adaptive behavior skills, school learning, and socialization. This connection to daily life is crucial.
Karwatsky: You’ve been a strong advocate for collaboration across disciplines and with families. How does uniting researchers drive more impactful changes?
Abbeduto: Improving language requires understanding the whole person and their life context. For example, if a person has limitations in executive functioning, planning, and monitoring, it will impact their language development. Similarly, severe social anxiety can hinder language learning and use. No single expert can address all these facets, so a multidisciplinary team is essential for a comprehensive assessment of the individual.
Today, with the neurodiversity perspective, we must also include families and individuals with neurodevelopmental conditions in the research process. Their input shapes what’s important to them, their experiences, and the help they seek. This collaborative approach, integrating efforts from researchers, families, and communities, is both challenging and exciting. If we can achieve this, we’ll see much greater success.
As Dr. Abbeduto’s words highlight, the field of language development in neurodevelopmental conditions is advancing, but challen
ges remain. His keynote at the SCERT Conference promises to offer powerful insights, addressing these challenges and opening up new avenues for collaboration in the field.
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