Advancing Autism Research: The Latest Updates from the Lord Lab

Fall 2023

By: Kyle Sterrett, PhD

Under the leadership of Dr. Catherine Lord, researchers are forging ahead to expand our knowledge of autism spectrum disorder with the following groundbreaking studies:

Grant from National Institute on Aging
Dr. Catherine Lord, along with co-investigators Drs. Judith Carroll and Abigail Dickenson received a 5-year grant from the National Institute on Aging to longitudinally follow the caregivers of the 157 autistic participants enrolled in the Early Diagnosis Cohort (EDX). This cohort was first seen around 1993 and has been followed continuously since then, offering a rich perspective on the unfolding of autism across time. As a part of this grant, the caregivers, who are on average around 65-years-old, will be seen twice in-person over the next 5 years. The goal will be to better understand aging processes in family caregivers and improve our ability to support the resilience of family caregivers of adults with autism and developmental disorders as caregivers move into later life.

ADOS Bilingual Spanish/English Project
The Autism Diagnostic Observation Schedule-2 (ADOS-2) is part of the gold standard assessment battery for autism spectrum disorder (ASD). To date, the ADOS-2 has not been validated with English-Spanish bilingual populations. The purpose of this ongoing project is to learn more about whether the Spanish and English versions of the ADOS-2 detect autism symptoms in bilingual individuals differently. This may help to support clinicians’ make data informed decisions when they see bilingual autistic individuals for diagnostic assessments.

Next-Gen Sibs
The goal of this multi-site project, taking place at UCLA and Emory University, is to establish a collaborative network that will help in identification, evaluation and possible diagnosis and intervention for the children of typically developing siblings of individuals with autism spectrum disorder (ASD). We are interested in understanding, from the sibling’s perspective, how their childhood experiences have shaped their views of autism and how the research community can support them and their children moving forward.

Brief Observation of Social Communication Change (BOSCC)- Fluent Speech Modules
The Brief Observation of Social Communication Change (BOSCC) is a measure of treatment response that was developed in our lab to address the lack of valid, reliable, and sensitive measures available in autism intervention research. The versions for minimally verbal (MV; Grzadizinski et al., 2016) children and children with flexible phrases, but not yet fluent speech, (PSYF; Byrne et al., 2021) have been validated. Our lab is currently working on new versions for younger and older individuals with fluent speech. These validated measures will provide a consistent way to measure progress in autism symptoms across time.
    - https://doi.org/10.1007/s10803-016-2782-9
    - https://doi.org/10.1007/s10803-022-05877-5

Exploring Autism and Caregiver Perspectives: Recent Findings from the EDX Cohort
The data from the EDX cohort participants has been used in a number of recent publications from trainees in the Lord Lab focusing on both the individuals with autism and their caregivers. These include investigations of the mental health outcomes of autistic adults, the importance of adolescent social skills in relation to outcomes in adulthood, the impact of caregiving demands on caregiver well-being and the marital status of family caregivers over time. Brief summaries of these studies and links to the full articles are provided below.

Social Competence as a Predictor of Adult Outcomes in Autism Spectrum Disorder
Journal of Development and Psychopathology, Elaine B. Clarke and Catherine Lord Autism spectrum disorder (ASD) is defined based on differences in social development and communication. However, having an autism diagnosis does not mean that engaging in meaningful social behaviors is not possible. This study sought to replicate, in an autistic sample, longitudinal findings from typical development that adolescent social competence predicts positive adult outcomes. We first examined social competence trajectories of the EDX cohort participants from 2 to 26. Two patterns of social competence emerged: a low trajectory demonstrating slow gains throughout childhood and plateauing in adulthood, and a high trajectory exhibiting steeper gains in childhood followed by decline in adulthood, with social skills in the high trajectory group increasing at a faster rate. Higher scores on the Vineland Socialization domain and the Social Skills Questionnaire predicted the likelihood of having friendships in early adulthood. Vineland scores were also predictive of later employment and independent living status. These findings suggest that social impairments within ASD do not impact all realms of social functioning equally, highlighting the diverse presentation of autistic social strengths and challenges across development.
    - https://doi.org/10.1017/S0954579423000664

Perceived Negative Impact of Caregiving Demands in Parents of Individuals with Autism Spectrum Disorders from 9 to 25 Years of Age
Research in Autism Spectrum Disorders
Kourtney Christopher, Maira Tafolla, Kyle Sterrett, Rebecca Elias, and Catherine Lord

Caregivers of autistic individuals often experience greater caregiving responsibilities across their children’s lives. These caregiving responsibilities can be perceived as having both positive and negative impact on well-being. This study identified trajectories of perceived negative impact of caregiving within the EDX sample from childhood through emerging adulthood and their predictors. Low, medium, and high impact classes were identified, with all three groups reporting reductions in perceived negative impact of caregiving after adolescence. Several factors predicted membership within the low negative impact group, including lower levels of child irritability and parent-reported restricted and repetitive behaviors. Caregivers who were African American, had less educational attainment, and those with social support were also more likely to belong to the low negative impact group. These findings emphasize the need for intervention within family systems to decrease caregiver negative impact and increase overall well-being of caregivers, autistic individuals, and families.
    - https://doi.org/10.1016/j.rasd.2023.102203

Anxiety, depression, and well-being in autistic adults and adults with other developmental disabilities: A longitudinal cross-lagged analysis
Autism Research
Hillary Schiltz, Kyle Sterrett, Hannah Singer and Catherine Lord

Autistic individuals and individuals with developmental delays are at high risk for anxiety and depression. The present study examined the relationship between anxiety, depression, and well-being in a sample of 130 adults with autism and other developmental delays as reported by their caregivers and themselves (for those able to report on their symptoms). Results indicated that reports of internalizing symptoms early in adulthood (age 18 to 26) were linked to similar reports later in adulthood (age 26 to 30). This was true for both anxiety and depression. When looking at the relationship between anxiety and depression symptoms across time, results differed between reports of caregivers and participants themselves. While data from caregiver reports suggests early anxiety predicts later depression, the opposite was true for self-reported symptoms. Both self- and caregiver- reports of depression symptoms also predicted a decrease in feelings of purpose in life. Overall, results suggest clinicians should closely monitor the mental health of individuals with autism and DD’s as they enter early adulthood, a time of transition and uncertainty as many exit school and enter the workforce.
    - https://doi.org/10.1002/aur.2967

Marital status over 28 years of parents of individuals with autism and other developmental disabilities
Journal of Family Psychology
Niki Bahri, Kyle Sterrett and Catherine Lord

There are few studies that have tracked the marital status in parents of individuals with autism over time. This study describes the timing of divorce and the factors that contribute to divorce in families of individuals with autism and other developmental delays (DD). Our sample includes 219 children initially referred for autism and other developmental delays followed up to age 30. Higher rates of divorce were seen in lower maternal education, lower maternal age at childbirth, and families of color. Risk for divorce was highest when the child was between 0 to 5 years or older than 15 years. For those who experienced a divorce after 15-years-old, risk was especially increased for teens with higher cognitive abilities and stronger daily living skills. The increased risk for divorce during this period may be due to the stresses of transitional planning and uncertainty surrounding how to best support a more independent child. Considering the especially high rate of divorce for parents of children over 15 years of age, we advocate for better support of families with individuals with autism or other developmental delays throughout the lifespan.
    - https://doi.org/10.1037/fam0001093

Commentaries
Dr. Lord has published two recent commentaries on issues affecting autism research and clinical work. Written with Dr. Somer Bishop, they have focused on issues surrounding diagnostic assessments, their utility and their purpose. They emphasize that standardized diagnostic instruments are meant to aid skilled clinicians in the process of gathering diagnostic information and that mandates on the use of specific tools should be avoided. They also discuss the challenges and limitations related to the development of new, open source measures.
    - https://doi.org/10.1111/jcpp.13802
    - https://doi.org/10.1111/dmcn.15541

About Dr. Catherine Lord
Dr. Catherine Lord is the George Tarjan Distinguished Professor of Psychiatry at the Semel Institute of Neuroscience and Human Behavior and the David Geffen School of Medicine at UCLA. Her research and clinical work are aimed at improving methods of identifying strengths and difficulties in individuals with ASD over time and working to maximize independence and well-being for individuals with neurodevelopmental disorders and their families. This has involved the development of diagnostic instruments (the Autism Diagnostic Observation Schedule - ADOS, the Autism Diagnostic Interview-Revised – ADI-R, the Brief Observation of Social Communication Change- BOSCC and the Social Communication Questionnaire-SCQ), contributions to intervention science through her work around early intervention.