TY - JOUR
T1 - Early Pandemic Experiences of Autistic Adults
T2 - Predictors of Psychological Distress
AU - the SPARK Consortium
AU - Bal, Vanessa H.
AU - Wilkinson, Ellen
AU - White, L. Casey
AU - Law, J. Kiely
AU - Feliciano, Pamela
AU - Chung, Wendy K.
AU - Abbeduto, Leonard
AU - Aberbach, Gabriella
AU - Aberle, Shelley
AU - Acampado, John
AU - Ace, Andy
AU - Ahlers, Kaitlyn
AU - Albright, Charles
AU - Alessandri, Michael
AU - Alvarez, Nicolas
AU - Amaral, David
AU - Amatya, Alpha
AU - Andrus, Alicia
AU - Anglo, Claudine
AU - Annett, Rob
AU - Arzate, Eduardo
AU - Astrovskaya, Irina
AU - Baalman, Kelli
AU - Baer, Melissa
AU - Baraghoshi, Gabriele
AU - Bardett, Nicole
AU - Barnes, Sarah
AU - Bashar, Asif
AU - Bates, Heidi
AU - Beard, Katie
AU - Becerra, Juana
AU - Beckwith, Malia
AU - Beeson, Landon
AU - Beeson, Josh
AU - Bell, Brandi
AU - Belli, Monica
AU - Bentley, Dawn
AU - Berger, Natalie
AU - Berman, Anna
AU - Bernier, Raphael
AU - Berry-Kravis, Elizabeth
AU - Berwanger, Mary
AU - Birdwell, Shelby
AU - Blank, Elizabeth
AU - Booker, Stephanie
AU - Bordofsky, Aniela
AU - Bower, Erin
AU - Bradley, Catherine
AU - Shulman, Lisa
AU - Valicenti-Mcdermott, Maria
N1 - Funding Information:
No authors have any conflicts to declare. Mustafa Sahin has received research funding from Novartis, Roche, Pfizer, Biogen, Ipsen, LAM Therapeutics, Astellas, Bridgebio and Quadrant Biosciences and has served on the Scientific Advisory Boards for Sage Therapeutics, Roche, Celgene, Aeovian, Regenxbio and Takeda. Robin Kochel has a contract with Yamo Pharmaceuticals, Inc., to consult on the design of clinical trials for individuals with ASD. Suma Jacobs has been an investigator in multisite treatment trials by Roche and served on an autism advisory board for Roche.
Publisher Copyright:
© 2021 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.
PY - 2021/6
Y1 - 2021/6
N2 - The COVID-19 pandemic has disrupted lives around the world. Autistic adults are at higher risk for co-occurring medical and psychiatric conditions and may be more prone to difficulties adapting to pandemic-related changes and social distancing mandates and coping with ongoing uncertainties. On the other hand, the pandemic may lead to greater understanding and acceptance of accommodations in the broader community that may facilitate supports for autistic adults beyond the pandemic. To learn more about their early pandemic experiences, online surveys were sent to independent adults enrolled in the Simons Powering Autism Research Knowledge (SPARK). The first survey was open from March 30 to April 19, 2020; a follow-up survey sent to original responders was open from May 27 to June 6, yielding 396 participants with data for both surveys. We found that adults who were female, younger, had prior diagnoses of a mental health condition, personal COVID-19 experience (i.e., knowing someone who had symptoms or tested positive) or less frequent hope for the future reported the greatest negative impacts. Decrease in feelings of hopefulness over time predicted greater psychological distress at T2, accounting for T1 impact and distress levels and increases in total COVID-19 impact. Less perceived benefit of online services also predicted later distress. Although there tends to be a focus on coping with negative effects of the pandemic, mental health providers may consider approaches that focus on positives, such as fostering hope and understanding factors that facilitate benefit from online services. Lay Summary: Autistic adults may be at risk for psychological distress during the COVID-19 pandemic. The current study suggests that autistic adults who were younger, female, had a mental health diagnosis before the pandemic and knew someone who showed symptoms or tested positive for COVID-19 reported more areas negatively impacted by COVID-19 and greater difficulty coping with those effects. Decreases in hope over time were associated with greater psychological distress. Less perceived benefit from online services also predicted distress 2 months later. These results suggest important areas to further explore as we develop supports for autistic adults during the pandemic.
AB - The COVID-19 pandemic has disrupted lives around the world. Autistic adults are at higher risk for co-occurring medical and psychiatric conditions and may be more prone to difficulties adapting to pandemic-related changes and social distancing mandates and coping with ongoing uncertainties. On the other hand, the pandemic may lead to greater understanding and acceptance of accommodations in the broader community that may facilitate supports for autistic adults beyond the pandemic. To learn more about their early pandemic experiences, online surveys were sent to independent adults enrolled in the Simons Powering Autism Research Knowledge (SPARK). The first survey was open from March 30 to April 19, 2020; a follow-up survey sent to original responders was open from May 27 to June 6, yielding 396 participants with data for both surveys. We found that adults who were female, younger, had prior diagnoses of a mental health condition, personal COVID-19 experience (i.e., knowing someone who had symptoms or tested positive) or less frequent hope for the future reported the greatest negative impacts. Decrease in feelings of hopefulness over time predicted greater psychological distress at T2, accounting for T1 impact and distress levels and increases in total COVID-19 impact. Less perceived benefit of online services also predicted later distress. Although there tends to be a focus on coping with negative effects of the pandemic, mental health providers may consider approaches that focus on positives, such as fostering hope and understanding factors that facilitate benefit from online services. Lay Summary: Autistic adults may be at risk for psychological distress during the COVID-19 pandemic. The current study suggests that autistic adults who were younger, female, had a mental health diagnosis before the pandemic and knew someone who showed symptoms or tested positive for COVID-19 reported more areas negatively impacted by COVID-19 and greater difficulty coping with those effects. Decreases in hope over time were associated with greater psychological distress. Less perceived benefit from online services also predicted distress 2 months later. These results suggest important areas to further explore as we develop supports for autistic adults during the pandemic.
KW - COVID-19 pandemic
KW - adults
KW - co-morbid conditions
KW - gender/female ASD
KW - hope
KW - loneliness
UR - http://www.scopus.com/inward/record.url?scp=85100717523&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85100717523&partnerID=8YFLogxK
U2 - 10.1002/aur.2480
DO - 10.1002/aur.2480
M3 - Article
AN - SCOPUS:85100717523
SN - 1939-3806
VL - 14
SP - 1209
EP - 1219
JO - Autism Research
JF - Autism Research
IS - 6
ER -