autism spectrum disorder

Striving for a better understanding of late autism diagnosis

Shayla Brown — Fri, 21 Oct 2022 20:38:14 +0000

Striving for a better understanding of late autism diagnosis Shayla Brown Fri, 10/21/2022 - 16:38

��AV researcher Allison Jack recently received an Autism Center of Excellence (ACE) Network award from the National Institutes of Health (NIH) for her research efforts aimed at understanding why some autistic individuals receive very late diagnoses, or none at all.

Allison Jack. Photo by Sierra Guard/Creative Services

NIH’s ACE Program funds large research projects to understand and develop interventions for autism spectrum disorder (ASD). This project is a collaboration between multiple universities, hospitals, and organizations.

“When we have people getting these late diagnoses that limit their ability to access a lot of supportive services,” said Jack, an assistant professor in Mason’s Psychology Department, “we were also noticing in our data that these individuals who had these late diagnoses were reporting much poorer quality of life with greater anxiety and depression.”

Jack has worked on the longitudinal project since its inception, starting as a postdoctoral fellow studying with Yale’s Kevin Pelphrey. Pelphrey, Jack and Lauren Kenworthy, director at Children’s National’s Center for Autism Spectrum Disorders, are the three MPIs on the project.

During the early phases of the project, their team looked at children between the ages 8-17. “We tried to describe autistic girls, their brains, their genetics, and their behavior. Are they different from autistic boys in any way? Are they different from neurotypical kids?”

The following phase of the project was disrupted by COVID. “It ended up being a lot of online follow-ups with these kids who had come in the first five years of the project,” said Jack. “They were getting older, and we were following them into adolescence and the transition into adulthood to see how these youth were doing over time.”

Allison Jack. Photo by Sierra Guard/Creative Services

A tangible product their team hopes to have at the end of their research will allow patients to be diagnosed who are routinely missed by current methods.

“Ultimately, the tool will be a concise series of questions that an individual and/or caregiver can answer via a smartphone, web page, or via pencil and paper,” said Pelphrey, who is part of the Child Study Center at the Yale School of Medicine. “This tool will provide a diagnostic access point for adolescents and adults at risk for late diagnosis.”

“Dr. Jack started with us and was instrumental in making this project successful,” said Pelphrey. “She’s been the primary author on several of the most important and impactful papers to come out of this work. It’s been an honor to watch her professional development.”

The award is special, said Jack, due to its highly competitive and high-profile nature.

This is the project’s third round of funding since 2012. "The sites that are working on east centers or east networks tend to get thought of as premiere locations for autism research nationwide, so this is a pretty big deal in the autism world!” said Jack.

Topics

College of Humanities and Social Sciences

Research

Psychology Department

autism spectrum disorder

Institute for Biohealth Innovation

NIH grant funding

Mason team works to identify more objective evaluations to diagnose autism

Colleen Rich — Wed, 20 Jul 2022 16:42:08 +0000

Mason team works to identify more objective evaluations to diagnose autism Colleen Rich Wed, 07/20/2022 - 12:42

Mason research Allison Jack with a MRI simulator she uses to prepare young study participants prior to scanning. Photo by Sierra Guard/Creative Services

For most of her life, Allison Jack has aspired to improve the lives of autistic people. The ��AV researcher had a childhood friend with autism and had witnessed some of the challenges neurodiverse individuals face. That experience combined with her natural curiosity about the brain made her determined to carry out her mission.

As she became more embedded in the field of autism, Jack learned that many autistic people, including those designated female at birth and those who are gender nonconforming, often receive delayed diagnoses, misdiagnoses, or no diagnoses at all. Past autism research has frequently overlooked both subsets of individuals. Jack believes that these discrepancies may be partially responsible for a poorer quality of life for those affected.

“For years now, the autistic community has strongly been speaking up about how research and public policy have not always accurately reflected the needs and desires of neurodiverse people,” said Jack, who is an assistant professor in the Department of Psychology in Mason's College of Humanities and Social Sciences and a member of the Institute for Biohealth Innovation.

Allison Jack. Photo by Sierra Guard/Creative Services

Jack is a member of the Gender Exploration of Neurogenetics and Development to Advanced Autism Research Consortium, a National Institutes of Health-funded Autism Centers of Excellence (ACE) network focused on learning more about how sex and gender relate to biology, behavior, and the well-being of autistic children, teenagers, and young adults.

Her partners in this initiative include such local groups as the Center for Autism Spectrum Disorders at Children’s National and the Autistic Self-Advocacy Network and the Autistic Women and Nonbinary Network, two organizations that offer support to those diagnosed and promote autistic representation in research and public policy.

Inspired by ACE’s commitment to effectively engage autistic individuals and champion their equal representation, Jack wanted to build on their work. When she received a job offer from Mason, she knew she had found a university with similar values that would allow her to implement her plan.

“I wanted to set up an autism-friendly lab with heavy involvement from neurodiverse students, and Mason actively encouraged the idea,” said Jack. “Mason is very special in that way. I don't know that I've been in any place previously that would have been this affirmatively excited and accommodating.”

Jack’s lab fosters increased representation in research and provides an opportunity for neurodiverse individuals to receive scientific training so that they can assist in the design and execution of studies, another objective of autism advocacy groups. Jack believes autistic people should be involved in every level of autism research, and she finds their suggestions to be both enlightening and highly beneficial.

“I had one autistic graduate student propose that we have an infrastructure in place for current and potential autistic research participants to talk to us through text or online chat because they commonly feel very uncomfortable with other forms of communication we were using, like the phone,” said Jack. “As a neurotypical individual, I had never considered that before, and it was extremely eye-opening.”

Jack said she would like to see the introduction of more objective evaluations for autism. Current diagnostic measures are based on observation, which she believes may be a factor in late or missed diagnoses. Moving forward, she hopes that her lab’s work will result in more accurate tests that incorporate information about biology. Jack and her team are also utilizing Mason’s 3T MRI scanner to examine which regions in the brain may play a role in the development of autism.

While juggling multiple goals may seem daunting, Jack’s passion for helping the autistic community acts as her main motivator. She is also grateful for the contributions and insights of those who work alongside her.

“I love the brain and think it’s endlessly fascinating, but mostly I love my team,” Jack said. “It's such good fortune to get to work with people who are primarily concerned with ensuring that we're doing the best job possible of including people who might otherwise be ignored and representing the true breadth of experience out there.”