SHS researchers bridge research and real life



Laura Mattie, left, and Meaghan McKenna exemplify how SHS researchers connect to community (Photo by Ethan Simmons)

The work at the College of Applied Health Sciences doesn’t stay in the lab—it transforms lives. Faculty such as Meaghan McKenna and Laura Mattie exemplify the college’s commitment to bridging research with community impact. Whether developing interventions for literacy in schools or building relationships with families of children with disabilities, they show how academic insights can create tangible benefits.

Mattie joined the faculty in the Department of Speech and Hearing Science in 2015. Now an associate professor, she has spent the past nine years working on research with her colleagues in SHS as the principal investigator in the Development in Neurogenetic Disabilities Lab. She said her time spent at the department has led to close relationships, both personal and professional.

“The interdisciplinary nature of the department, the university and the college really has helped me to build more collaborations, and I think that’s one of the key things to being successful in my field,” Mattie said. “Some of my collaborators are my closest friends.”

Mattie’s fall semester class, titled Children with Neurodevelopmental Disorders Across Communication Contexts, covers the development of social and communication skills in children with various neurodevelopmental disorders that her research is focused on as well. Her current research, which primarily concerns children with fragile X syndrome and Down syndrome involves longitudinal studies that require a level of personal connection with families of children partaking in her studies. 

For Mattie, being a new mom to two young girls has offered a fresh perspective on her research.

“As we’re getting closer to the end of the project and thinking of what to do next, the mom in me led to the thought, ‘How do we get information to moms and clinicians quicker?”’

Mattie said building relationships with families really allowed researchers to value their thoughts and experiences.

“I want to partner with families and clinicians—and we found this evidence that we think is helpful—but how can we package the information so they can use it every day; how can we really make it accessible for them, and instead of getting it to them in 10-15 years (the current research-to-practice gap), get it back to them quicker?”

McKenna isn’t just one of the most recent additions to the SHS as an assistant professor. She also has years of experience as a speech-language pathologist and a passion for connecting with districts, schools and educational professionals about solving problems of practice corresponding to literacy and multi-tiered systems of support.

“Forming partnerships and relationships is the most important thing I do,” she said.

Working in SHS is a position that is far from stationary: McKenna’s work pulls her across not only campus, but into surrounding cities and school districts where she aims to narrow the gap between research and practice. She currently partners with her colleague Amber Ray in the Department of Special Education and Holy Cross School in Champaign on writing intervention research. 

McKenna has also joined three other schools and districts who connected with her about their mutual interest in solving problems of practice corresponding to writing. In Danville, she is collaborating with the curriculum department and classroom teachers as K-2 instructional guides are created that highlight daily writing activities aligned with the core curriculum and evidence-based practices. In Blue Ridge, Illinois, professional development sessions that address writing instructional priorities identified by classroom teachers are held monthly. In Chicago, a Pre-K-8 school formed an instructional leadership team committed to vertical alignment of how the writing process (cycle) is taught and student writing is evaluated.

“I think it’s important for us to bridge what we’re doing in research and think about how it translates into practice,” she said. “I don’t think it’s productive to be in a research lab all day or writing papers if it doesn’t have any impact on the community or individuals who are going to be applying the findings. The opportunity to co-learn with schools and districts across the state (who are) committed to prioritizing writing has been the highlight of my second year in Illinois.”

Editor’s note:

To reach Vince Lara-Cinisomo, email vinlara@illinois.edu.
 

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Improving clinical practice and quality of life



Speech and Hearing Science Associate Professors Marie Moore Channell and Laura Mattie have long been interested in the development of communication and life skills in individuals with neurodevelopmental and intellectual disabilities.

Channell directs the Intellectual DisAbilities Communication Lab, where her research team works toward a comprehensive understanding of skills that support day-to-day communication for people with Down syndrome in order to identify and develop strategies for supporting their social and academic success. In Mattie’s Development in Neurogenetic Disabilities Lab, research addresses the early development of individuals with Down syndrome and fragile X syndrome. She, too, aims toward promoting the developmental success and well-being of people with these neurogenetic disabilities.

The scholars’ shared interests have led to fruitful collaborations in the past. They led a team of researchers who used a large, national database developed by the Down Syndrome Cognition Project to characterize variability in IQ, executive functioning, adaptive and challenging behavior, and autism symptomatology among individuals with Down syndrome.

In a paper titled “Capturing cognitive and behavioral variability among individuals with Down syndrome: a latent profile analysis,” published in the Journal of Neurodevelopmental Disorders (2021, 13:16), Channell, Mattie and their co-authors describe three latent classes, or subtypes, of people with Down syndrome that emerged from their analyses.

Those in the “normative” group showed a profile of cognition and behavior that is typically represented in the literature on Down syndrome. Those in the “cognitive” group had lower cognitive scores and adaptive behaviors such as self-care and daily living skills than their peers with Down syndrome, along with high rates of autism symptoms.

Those in the “behavioral” group showed cognitive scores and adaptive behaviors similar to their peers with Down syndrome but had high rates of autism symptoms and challenging behaviors such as hyperactivity and conduct problems. Thus, with a large enough sample size, different patterns of autism symptoms and other characteristics can be seen across individuals with Down syndrome. The ultimate goal in precisely characterizing individual variability within Down syndrome is to optimize daily living through targeted treatments and interventions.

Overcoming diagnostic hurdles

Channell and Mattie currently are collaborating as principal and co-principal investigators on a study funded by the National Institutes of Health INCLUDE Project, which supports research related to the health and quality of life of individuals with Down syndrome. Working with researchers at Emory University, Johns Hopkins University and the Kennedy Krieger Institute, their study seeks to increase understanding of the co-occurrence of autism with Down syndrome to improve its diagnosis and treatment.

“There is a stereotype of people with Down syndrome as happy, social people who can’t have autism,” Channell said. “It’s more common than previously thought, but underdiagnosed.”

Interventions and therapies that people with autism receive could be a beneficial add-on to services offered to individuals with Down syndrome. Part of the problem in diagnosing autism in this population is that autism screening tools that were developed for the general population need to be adapted. To work toward the goal of developing better tools to screen for autism in people with Down syndrome, Channell, Mattie and their collaborators are conducting a nationwide survey of caregivers of youth with Down syndrome in which they are completing existing screening tools and other developmental questionnaires. The researchers will then examine and adapt the screening tools as needed so they can be used by practitioners to determine whom to refer for a full autism evaluation.

They are casting a wide net in hopes not only of representing all the varying abilities within Down syndrome, but also of including groups that are not well represented in the existing research.

“Underrepresentation is a big problem in research related to Down syndrome,” Mattie said. “We have a diverse board of stakeholders, are building relationships with the Black Down Syndrome Association, and targeting rural and Hispanic families as well.”

The questionnaires and other screening tools completed by caregivers are just one element of an autism diagnosis. There also is an in-person evaluation component, which is conducted by either developmental behavioral pediatricians or clinical psychologists who are specifically trained in autism diagnostics and assessment, as well as neuropsychological methods. The difficulty with this aspect of diagnosis is two-fold, Mattie said.

“First, the number of developmental behavioral pediatricians and clinical psychologists with this specialized training is limited, so there’s a bottleneck,” she said. “Also, while they may have expertise in autism, they don’t necessarily know about Down syndrome. So the ability to identify a true co-occurring condition is really lacking.”

Channell and Mattie may be conducting the first large-scale study using the broad screening measures doctors and clinicians give to families when autism is first suspected. Theirs may also be the first study that will explore the use of telehealth to conduct diagnostic evaluations of autism in children with Down syndrome.

“If we can figure out how to make that work, we can increase access to evaluations by specialists,” Channell said. They are working with a clinician at Kennedy Krieger, Natasha Ludwig, who will conduct the evaluations of autism in the telehealth sessions, and with Amy Cohen, director of the University of Illinois Autism Clinic, who will review and “score” the evaluations as well to ensure that evaluation tools will lead to consistent results when used by different clinicians.

With the dual focus on developing effective autism screening and diagnostic tools for individuals with Down syndrome and increasing access to specialists who are skilled in both autism and intellectual disability, Channell and Mattie intend to make a significant and lasting impact on improving the quality of life of a population that has historically been underdiagnosed and underserved. That’s good news for the individuals themselves and their caregivers, as well as the scores of clinicians who dedicate their professional lives to providing the best services possible to their clients.

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AHS Get to Know: Laura Mattie, Ph.D.



AHS Get to Know: Laura Mattie, associate professor in the Department of Speech and Hearing Science

Laura Mattie joined the College of Applied Health Sciences in 2015. She leads the Development in Neurogenetic Disabilities Lab, or “DND” Lab. 

How would you describe your primary research interests? 

My primary research interest is learning how young children with neurodevelopmental disabilities develop early social and communication skills to inform parent-implemented early language interventions.

Why did you decide to apply to work at Illinois?

I applied to Illinois because it was one of the only job postings that targeted expertise in children with disabilities and family well-being, which signified that my work was already valued.

What are you working on right now? 

I have 4 main projects right now: 

  • The Power of the Point Project focuses on the predictors of early language development in toddlers with Down syndrome and fragile X syndrome.
  • ASD Screening Tools in Down Syndrome is a large-scale survey of caregivers of individuals 6-18 years old that aims to determine how to best use autism screening tools for this population.
  • The Speech Accessibility Project aims to make voice recognition technology useful for individuals who may have diverse speech patterns and disabilities, including people with Down syndrome.
  • A Foundational Study of Adaptive Behaviors in Individuals with Down Syndrome is a survey of caregivers to learn about the practical, conceptual, and social skills used in everyday life by their children with Down syndrome who are between birth to 22 years old.

What’s a fun fact you’d like to share about yourself? 

I am a twin mom to 15-month-old girls, so much of my free time is chasing after them! When I do have some down time, I enjoy rewatching TV shows like “The Office” and “Parks & Recreation,” reading, and snuggling with our dogs.
 

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Improving clinical practice and quality of life



Marie Moore Channell and Laura Mattie (Photo provided)

Speech and Hearing Science Associate Professors Marie Moore Channell and Laura Mattie have long been interested in the development of communication and life skills in individuals with neurodevelopmental and intellectual disabilities.

Channell directs the Intellectual DisAbilities Communication Lab, where her research team works toward a comprehensive understanding of skills that support day-to-day communication for people with Down syndrome in order to identify and develop strategies for supporting their social and academic success. In Mattie’s Development in Neurogenetic Disabilities Lab, research addresses the early development of individuals with Down syndrome and fragile X syndrome. She, too, aims toward promoting the developmental success and well-being of people with these neurogenetic disabilities.

The scholars’ shared interests have led to fruitful collaborations in the past. They led a team of researchers who used a large, national database developed by the Down Syndrome Cognition Project to characterize variability in IQ, executive functioning, adaptive and challenging behavior, and autism symptomatology among individuals with Down syndrome.

In a paper titled “Capturing cognitive and behavioral variability among individuals with Down syndrome: a latent profile analysis,” published in the Journal of Neurodevelopmental Disorders (2021, 13:16), Channell, Mattie and their co-authors describe three latent classes, or subtypes, of people with Down syndrome that emerged from their analyses.

Those in the “normative” group showed a profile of cognition and behavior that is typically represented in the literature on Down syndrome. Those in the “cognitive” group had lower cognitive scores and adaptive behaviors such as self-care and daily living skills than their peers with Down syndrome, along with high rates of autism symptoms.

Those in the “behavioral” group showed cognitive scores and adaptive behaviors similar to their peers with Down syndrome but had high rates of autism symptoms and challenging behaviors such as hyperactivity and conduct problems. Thus, with a large enough sample size, different patterns of autism symptoms and other characteristics can be seen across individuals with Down syndrome. The ultimate goal in precisely characterizing individual variability within Down syndrome is to optimize daily living through targeted treatments and interventions.

Overcoming diagnostic hurdles

Channell and Mattie currently are collaborating as principal and co-principal investigators on a study funded by the National Institutes of Health INCLUDE Project, which supports research related to the health and quality of life of individuals with Down syndrome. Working with researchers at Emory University, Johns Hopkins University and the Kennedy Krieger Institute, their study seeks to increase understanding of the co-occurrence of autism with Down syndrome to improve its diagnosis and treatment.

“There is a stereotype of people with Down syndrome as happy, social people who can’t have autism,” Channell said. “It’s more common than previously thought, but underdiagnosed.”

Interventions and therapies that people with autism receive could be a beneficial add-on to services offered to individuals with Down syndrome. Part of the problem in diagnosing autism in this population is that autism screening tools that were developed for the general population need to be adapted. To work toward the goal of developing better tools to screen for autism in people with Down syndrome, Channell, Mattie and their collaborators are conducting a nationwide survey of caregivers of youth with Down syndrome in which they are completing existing screening tools and other developmental questionnaires. The researchers will then examine and adapt the screening tools as needed so they can be used by practitioners to determine whom to refer for a full autism evaluation.

They are casting a wide net in hopes not only of representing all the varying abilities within Down syndrome, but also of including groups that are not well represented in the existing research.

“Underrepresentation is a big problem in research related to Down syndrome,” Mattie said. “We have a diverse board of stakeholders, are building relationships with the Black Down Syndrome Association, and targeting rural and Hispanic families as well.”

The questionnaires and other screening tools completed by caregivers are just one element of an autism diagnosis. There also is an in-person evaluation component, which is conducted by either developmental behavioral pediatricians or clinical psychologists who are specifically trained in autism diagnostics and assessment, as well as neuropsychological methods. The difficulty with this aspect of diagnosis is two-fold, Mattie said.

“First, the number of developmental behavioral pediatricians and clinical psychologists with this specialized training is limited, so there’s a bottleneck,” she said. “Also, while they may have expertise in autism, they don’t necessarily know about Down syndrome. So the ability to identify a true co-occurring condition is really lacking.”

Channell and Mattie may be conducting the first large-scale study using the broad screening measures doctors and clinicians give to families when autism is first suspected. Theirs may also be the first study that will explore the use of telehealth to conduct diagnostic evaluations of autism in children with Down syndrome.

“If we can figure out how to make that work, we can increase access to evaluations by specialists,” Channell said. They are working with a clinician at Kennedy Krieger, Natasha Ludwig, who will conduct the evaluations of autism in the telehealth sessions, and with Amy Cohen, director of the University of Illinois Autism Clinic, who will review and “score” the evaluations as well to ensure that evaluation tools will lead to consistent results when used by different clinicians.

With the dual focus on developing effective autism screening and diagnostic tools for individuals with Down syndrome and increasing access to specialists who are skilled in both autism and intellectual disability, Channell and Mattie intend to make a significant and lasting impact on improving the quality of life of a population that has historically been underdiagnosed and underserved. That’s good news for the individuals themselves and their caregivers, as well as the scores of clinicians who dedicate their professional lives to providing the best services possible to their clients.

Related news

AHS Get to Know: Laura Mattie, Ph.D.



Photo by caption

How would you describe your primary research interests? 

My primary research interest is learning how young children with neurodevelopmental disabilities develop early social and communication skills to inform parent-implemented early language interventions.

Why did you decide to apply to work at Illinois?

I applied to Illinois because it was one of the only job postings that targeted expertise in children with disabilities and family well-being, which signified that my work was already valued.

What are you working on right now? 

I have 4 main projects right now: 

  • The Power of the Point Project focuses on the predictors of early language development in toddlers with Down syndrome and fragile X syndrome.
  • ASD Screening Tools in Down Syndrome is a large-scale survey of caregivers of individuals 6-18 years old that aims to determine how to best use autism screening tools for this population.
  • The Speech Accessibility Project aims to make voice recognition technology useful for individuals who may have diverse speech patterns and disabilities, including people with Down syndrome.
  • A Foundational Study of Adaptive Behaviors in Individuals with Down Syndrome is a survey of caregivers to learn about the practical, conceptual, and social skills used in everyday life by their children with Down syndrome who are between birth to 22 years old.

What’s a fun fact you’d like to share about yourself? 

I am a twin mom to 15-month-old girls, so much of my free time is chasing after them! When I do have some down time, I enjoy rewatching TV shows like “The Office” and “Parks & Recreation,” reading, and snuggling with our dogs.

Editor’s note:

To reach Ethan Simmons, email ecsimmon@illinois.edu.
 

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Mattie gets grant to study children with fragile X syndrome



Speech and Hearing Science Department assistant professor Laura Mattie is launching a study in August in hopes of developing ways to help children with fragile X syndrome communicate better.

Mattie received a grant of $454,977 over three years from The National Institute on Deafness and Other Communication Disorders (NIDCD), part of the National Institutes of Health, aimed at identifying the contribution of child and maternal gestures and responsive maternal language input to word learning opportunities, production practice, and spoken vocabulary growth for toddlers with fragile X syndrome (FXS).

Fragile X syndrome is an inherited genetic condition that causes a range of developmental delays, including learning disabilities and cognitive impairment. Affected individuals usually have delayed development of speech and language by the age of two.

Data collection will start on Aug. 1, Mattie said, and take place across the country.

“Fragile X syndrome is a rare neurogenetic disorder, so that means we will go to where the families live to collect the data,” she said. “It is easier for us to travel because the child participants are all toddlers.”

While existing research in FXS has revealed impairments in child gesture use, Mattie says in her abstract describing the study, no studies to date have examined the link between gesture use and the onset of first words prospectively.

“Our long-term goal is to develop and evaluate early language interventions for these children,” she said.

The term maternal language input is more than just a mom saying a word, and a child repeating it, Mattie said. “High-quality input involves what mothers are saying and how they use non-linguistic cues like gesture to connect their words to the objects children are playing with,” she said. “The timing of spoken words with the gesture cues also play a role in language learning.”

The study will involve toddlers with FXS and their biological mothers completing three assessments over a one-year period starting when the child is between 18 and 24 months. The mother and toddler will be observed to measure child gesture use, child vocabulary, and maternal gesture use and language input.

The ultimate goal, Mattie said, is helping children with FXS communicate. “It will improve their interactions with others in the community and helps with independence,” she said.

The next step for Mattie is conducting cross-syndrome comparisons between children with FXS and children with Down syndrome. A recent pilot grant from the Center on Health, Aging & Disability (CHAD) has allowed Mattie to examine similar skills in children with Down syndrome.

“Together these studies will support my long-term goal of designing early language interventions that build on the strengths of each population,” she said. “Early interventions have long-term and lasting effects on the outcomes of those who receive them.”

Editor’s note:

To reach Vince Lara-Cinisomo, email vinlara@illinois.edu.
 

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