Autism and the Pandemic: Diagnosis, Treatment, and Symptom ChangesJoanna Solomon
The COVID-19 pandemic and its associated public health response led to the enforcement of restrictions such as physical distancing, in-person school and office closures, shifts to online learning and virtual work, and reductions in community and school-based services and extracurricular activities. While these restrictions helped control the spread of COVID-19, they were unprecedented and had inadvertent consequences, such as adversely affecting the mental health of youth and adults.
For individuals with a mental health condition, coping with these pandemic-related changes may have also contributed to greater distress or impairment. The restrictions of the pandemic also influenced how Autism Spectrum Disorder (ASD) was diagnosed, monitored, and treated. While the pandemic may have affected day-to-day functioning, the question remains whether it also affected the symptoms of clinical disorders, such as ASD. Here, we’ll explore to what extent symptoms of ASD and the experiences of individuals diagnosed with ASD, as well as those performing diagnostic evaluations, shifted as a result of the pandemic.
Pandemic-Related Challenges for People with ASD
ASD is a neurodevelopmental disorder characterized by deficits in social communication and social interactions and accompanied by restricted, repetitive patterns of behavior, interests, or activities1. Experts have commented on how the vast uncertainty and unpredictability during the pandemic can be disruptive for someone diagnosed with ASD2. For those who need supports, unpredictable access to resources can cause undue stress. The interference with daily routines can be overstimulating (or under-stimulating), and new processes and interactions can introduce new challenges. One parent commented, “He’s stuck at home and doesn’t do anything…We can’t get him out of it. He started to flap his hands more, and his echolalia worsened3”
In a qualitative study3, researchers identified coping strategies and navigating new logistics of the pandemic as particularly concerning. During the pandemic, individuals with ASD noted increased challenges with maintaining healthy behaviors. Food sensitivity and selectivity, and unusual eating patterns were observed. The change in routines (e.g., no longer receiving school lunches) made it difficult for some to cope and adapt, and parents sought creative solutions and compromises3. Sleep-related challenges were common; difficulty falling asleep, difficulty staying asleep, and experiences of sleep disturbances reportedly increased during this time3.
These new challenges, and the pandemic itself, brought on new sources of anxiety for individuals with ASD, as well as for their loved ones and caregivers: “[N]ormal anxieties have been massively exacerbated because people are anxious much more about their family members, [such as] running out of food, [or] running out of medicine2.” Coping skills were put to the test; one study found that women with ASD, as compared to men, noted greater difficulty coping with the change in access to services, as well as more severe impairment across multiple domains (e.g., home, work, school)4 . Adults with ASD who contracted COVID-19 reported greater disruptions to social life, home life, and general psychological distress4 than those who did not have a personal experience with COVID.
Did Symptoms, Features, and Impairments of ASD Change?
As part of ongoing research efforts related to mental health and healthcare, MHS collected data about ASD symptoms prior to the pandemic (2019) and post-pandemic outbreak (2022). Adults rated themselves or were rated by an observer who knows them well (e.g., spouse, friend, co-worker, family member). The study included ratings from adults from the general population (n = 468 for self-reported ratings, n = 448 for observer-reported ratings) and adults diagnosed with ASD (n = 66 for self-reported ratings, n = 48 for observer-reported ratings).
The differences between ratings from 2019 to 2022 were analyzed. For those in the general population, symptoms were rarely endorsed at either time point, as expected. This finding provides evidence that the baseline (e.g., norms based on the general population) did not change due to the pandemic. Average scale scores for typical ASD symptoms such as Behavioral Rigidity, Hypersensitivity, and Social/Emotional Reciprocity changed by less than 2 standardized points (note that these differences were commonly a decrease in T-scores, and the change was not statistically significant, associated with very small effect sizes).
Some specific behaviors did differ before and after the pandemic for adults with ASD. There was a reported increase in self-injurious behavior; in 2019, 86.2% of the self-report sample (n = 29) said they never pinch themselves, while in 2022, only 51.4% (n = 37) said they never pinched themselves. The use of atypical language also increased; for example, in 2019, only 13.8% of the self-report sample reported frequently or very frequently following a script when talking to others, while in 2022, 43.2% of the self-report sample indicated the same behavior. It is difficult to discern whether this change reflects a true shift in ASD symptomology, or whether it may be a temporary increase in certain behaviors that may serve as coping skills during a stressful event.
Some concerns may not be unique to individuals with ASD; for example, observers in 2022 rated individuals with ASD as more likely to appear anxious or tense very frequently (36.4% of the sample, compared with 11.5% in 2019). Anxiety is a commonly co-occurring diagnosis with ASD. Although this increase may not speak to ASD-specific symptoms, it may still highlight the increased distress that individuals with ASD (among other disorders) have experienced.
Best Practices in ASD Evaluation
It is important to note that the diagnostic process and evaluation of ASD had to shift in response to the pandemic. Since symptoms and experiences of autism differ considerably from person to person, diagnosis can be challenging, regardless of a global health crisis. Standardized measures designed to identify symptoms and behaviors associated with ASD can be particularly beneficial to clinicians. Scientifically developed assessments, notably the Autism Spectrum Rating Scales™, can help yield accurate and informative data, leading to better decision-making and treatment planning5. Using reliable and validated tools to help with the diagnosis process is critical.
The pandemic introduced new challenges for individuals who diagnose, monitor, and treat ASD, in addition to the challenges outlined above for individuals diagnosed with ASD and their carers. During the pandemic, physical distancing measures made in-person evaluation difficult or, at times, not possible. Many practitioners employed video-conferencing platforms (e.g., Zoom) to meet patient needs. These telehealth solutions offer considerable flexibility for both patient and practitioner. While research shows there is promise, these solutions are still novel and require further investigation when compared to traditional in-person assessment and observation6.
Best practices for telehealth and ASD diagnosis continue to be explored. Patient satisfaction is high in telehealth settings, given the flexibility of scheduling and reduced need for multiple visits6,7. While this method is appreciated, it may not be adequate for all patients, and telehealth services may need to screen in advance for suitability7. The long-term effects of the pandemic warrant further research to find an evaluation approach that best suits the future of ASD assessment and care.
1 American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders: Fifth
edition text revision (DSM-5-TR™). American Psychiatric Association Publishing.
2 Cassidy, S. A., Nicolaidis, C., Davies, B., Des Roches Rosa, S., Eisenman, D., & Onaiwu, M. G. (2020). An
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3 Tokatly Latzer, I., Leitner, Y., & Karnieli-Miller, O. (2021). Core experiences of parents of children with
autism during the COVID-19 pandemic lockdown. Autism, 25(4), 1047–1059. doi:10.1177/1362361320984317
4 Bal, V. H., Wilkinson, E., White. L. C., Law, J. K., The Spark Consortium, Feliciano, P., & Chung, W. K.
(2021). Early pandemic experiences of autistic adults: Predictors of psychological distress. International Society for Autism Research, 14(6), 1209-1219. doi:10.1002/aur.2480
5 Goldstein, S., & Naglieri, J. A. (2009). Autism spectrum rating scales (ASRS) [technical manual].
6 Jang, J., White, S. P., Elser, A. N., Kim, S. H., Klaiman, C., Megerian, J. T., Morse, A., Nadler, C., & Kanne,
S. M. (2022). Diagnostic evaluations of Autism Spectrum Disorder during the COVID-19 pandemic. Journal of Autism and Developmental Disorders, 52, 962–973. doi:10.1007/s10803-021-04960-7
7 Gibbs, V., Cai, R. Y., Aldridge, F., & Wong, M. (2021). Autism assessment via telehealth during the
COVID 19 pandemic: Experiences and perspectives of autistic adults, parents/carers and clinicians. Research in Autism Spectrum Disorders, 88, 101859. doi:10.1016/j.rasd.2021.101859