Between 2000 and 2014, the number of children diagnosed with autism spectrum disorder (ASD) in the United States more than doubled, from approximately one in 150 to approximately one in 59. While it’s difficult to say whether this is due to a true increase in incidence, to heightened awareness and more frequent assessments, or a combination thereof, one thing is for sure: ASD affects millions of kids and families, and research is critical to advancing the way we understand, diagnose and treat this complex condition. Through our own Autism Discovery Institute (ADI) and myriad partnerships, Rady Children’s and a talented team of research investigators play a key role in this important innovation.
One such investigator is Lauren Brookman-Frazee, Ph.D., ADI research director, professor for the Department of Psychiatry at University of California San Diego School of Medicine, and associate director of the Child and Adolescent Services Research Center (CASRC). The CASRC brings together researchers from institutions including Rady Children’s, UC San Diego, San Diego State University (SDSU), University of San Diego and University of Southern California, who work with community partners to conduct research in public service sectors. With her finger on the pulse of what is now and next in ASD research, Brookman-Frazee provided us with a rundown of ADI research collaborations, recent exploratory wins and what the future may hold for ASD care.
The ADI is a place for families to access state-of-the-art clinical services, including comprehensive and multidisciplinary diagnostic and developmental evaluations, care coordination, and intervention services. Interventions offered include applied behavior analysis, parent-child developmental and behavioral therapy, social skills groups, and cognitive behavioral therapy. It’s also a hub for leading-edge, collaborative ASD investigations that aim to turn viable research discoveries into evidence-based care and services.
For studies, the ADI partners with researchers from multiple centers and institutions, particularly the CASRC, the Brain Development Imaging Laboratories (BDIL) at SDSU, Rady Children’s Institute for Genomic Medicine (RCIGM) and the UC Davis MIND Institute. Exploration spans areas including neurobiology, genetics, measurement and intervention development, and community services and implementation; and many new research initiatives are conceptualized using data from the ADI’s clinical service evaluations. “Taken together, the ADI hopes to both accelerate research and the rapid translation of research findings to clinical practice,” expresses Brookman-Frazee.
Although the ADI’s work has wide-reaching implications, San Diego ties are strong, and members of the local community are frequently invited to participate in studies. For instance, Themba Carr, Ph.D., clinical psychologist and clinic improvement coordinator at the ADI and Rady Children’s Developmental Evaluation Clinic, is the lead Rady Children’s investigator on two currently recruiting studies at the BDIL: Multimodal Imaging of Early Neural Signature in ASD and Integrity and Dynamic Processing Efficiency of Networks in ASD. The BDIL’s Inna Fishman, Ph.D., and Ralph-Axel Müller, Ph.D., are directing the studies, which are funded through the National Institutes of Mental Health. “The goal of these studies is to compare brain development between children with ASD and typically developing children using advanced imaging techniques, such as magnetic resonance imaging,” explains Carr. “These studies aim to identify early biomarkers of autism, even before behavioral symptoms manifest, and provide important information about how brain functioning changes from toddlerhood to adulthood.”
At any given moment, there are many exciting things happening across the ADI and partnered research groups. Brookman-Frazee took us on a deep dive into a few recent endeavors.
Brookman-Frazee and the ADI and RCIGM teams are collaborating on a project led by Kristen Wigby, M.D., a physician in the Rady Children’s Division of Genetics/Dysmorphology and an assistant clinical professor for the Department of Pediatrics at UC San Diego School of Medicine. Brookman-Frazee shared that they will explore long-term outcomes — specifically, social and emotional functioning, education and employment status, and community involvement — for kids with ASD who were enrolled in an early education program with typically developing peers, and whether differences in genetic profiles contribute to differences in these outcomes. Researchers are beginning to invite teens and young adults who attended Rady Children’s Toddler School, now called Alexa’s Playful Learning Academy for Young Children (PLAYC), between 1998 and 2008.Participants can elect to provide a blood sample for possible genetic testing.
Over at the CASRC, investigators “share a focus on conducting services and implementation research across community systems caring for youth and their families, including those with ASD,” explains Brookman-Frazee, who conducts her federally funded research here. Working with community and public organizations, CASRC researchers’ findings support efforts to improve access to and quality of ASD services including mental health and primary care; behavioral, developmental, vocational and rehabilitation services; and education. The CASRC group also emphasizes projects aimed at promoting families’ access to crucial services, regardless of racial or ethnic background or language spoken.
An example of these community-based research efforts is the two-part Translating Evidence-Based Interventions for ASD: Multi-Level Implementation Strategy (TEAMS) Project, which Brookman-Frazee and her MIND Institute colleague Aubyn Stahmer, Ph.D., are leading. The project is currently underway and actively enrolling 37 mental health programs and 37 school districts across California. In a nutshell, the TEAMS model aims to enhance ASD services in schools and through community programs, and subsequently kids’ outcomes, by testing strategies to train and support providers to deliver new ASD interventions. Stahmer’s part of the study is testing TEAMS when paired with a classroom intervention, while Brookman-Frazee’s is testing the TEAMS model in both outpatient and school-based public mental health offerings with her “An Individual Mental Health Intervention for ASD” (AIM HI) intervention for challenging behaviors. AIM HI was developed specifically for delivery by mental health therapists. The AIM HI component of TEAMS builds on more than a decade of community-partnered research studies focused on developing AIM HI and testing its therapist training impact on therapist practice and child outcomes.
“Publicly funded mental health services play an important role in addressing the common co-occurring mental health problems in children with ASD. Unfortunately, mental health therapists report lacking tools to adapt psychotherapy and counseling for this population. They frequently request training about ASD and are very motivated to learn new strategies to help the families they serve,” elaborates Brookman-Frazee. “In response, I partnered with community stakeholders and colleagues with expertise in ASD to develop AIM HI.” In a recently completed effectiveness trial, Brookman-Frazee and her team assessed community therapists from 29 Southern California mental health programs, and how AIM HI therapist training affected outcomes for 202 children with ASD who exhibited challenging behaviors. Over an 18-month timeframe, kids whose therapists learned AIM HI experienced more significant improvements than kids whose therapists continued with their usual care approach — less tailored to the needs of youth on the autism spectrum.
As the very first effectiveness trial to explore an ASD-specific psychosocial intervention within community mental health services, the AIM HI study offered compelling results that set the stage for many more studies of its kind. The TEAMS Project is sure to be just one of many to come. Brookman-Frazee expresses that one of the most important findings of the study was that “therapist fidelity to AIM HI strategies explained differences in child outcomes,” emphasizing the importance of developing successful ways to teach therapists to deliver new interventions.
In coming years, research into ASD therapies and diagnostic tools, as well as the root (or roots) of ASD itself, will continue to evolve. However, Brookman-Frazee notes that an enduring focus on access to state-of-the art interventions in community services — not just in research settings — is paramount, and will ensure that investment in research reaches those who will ultimately benefit from the work. Similarly, she notes it will be important for the scientific and medical practice community to make sure innovations in genomics, such as those coming out of the RCIGM, are translated into community practice to inform accurate diagnosis and individualized treatment planning.
With a future full of potential, Rady Children’s looks forward to continuing our contributions to ASD research, care and advocacy, and to ensuring every child with ASD and their families receive the targeted care and support they need.