COVID Restrictions Tough for Individuals With Autism and Their Caregivers

NEW YORK (Reuters Health) – COVID-19 restrictions greatly impacted young people with neurodevelopmental disorders and their caregivers, according to results of a large survey released at the International Society for Autism Research (INSAR) annual meeting.

Overall, the survey results highlight the fact that COVID-19 restrictions “disrupted access to medical and therapeutic services and created behavioral and psychological challenges” for children with neurodevelopmental disorders and their parents, said study author and presenter Carly Hyde, a graduate student researcher at the Semel Institute, University of California, Los Angeles, during a press briefing.

“The consequences of these experiences will persist as we transition out of COVID-19 restrictions, and families may require careful observation and sensitivity,” said Hyde.

The CARING through COVID survey gauged the impact of COVID-19 restrictions on individuals with neurodevelopmental disorders (including developmental delay, intellectual disability and autism-spectrum disorder) and their caregivers.

It was conducted online in April 2020 and again in February 2021 and included responses from over 1,000 families from 46 states in the United States and 39 countries around the world.

Results from the 2020 survey showed that three-quarters of individuals lost access to at least one therapeutic service, and 30% loss access to all services. However, more than half (56%) of respondents transitioned at least one service to remote delivery, Hyde reported.

“Most respondents rated these online services as helpful,” she noted.

In the second survey, distributed in 2021, fewer people lost access to services and more received in-person services. Nearly all respondents indicated that their child had received remote care from a physician.

Eighty percent of caregivers reported worsening of their child’s mood or behavior, most commonly sleep disruption, anxiety or mood dysregulation. However, some reported improvements in their child, including better communication or reduced problem behaviors.

Many caregivers reported that COVID-19-related restrictions had a negative impact on themselves such as anxiety, frustration or fear, although some reported a positive experience such as increased closeness with their families, Hyde noted.

Nearly a third of caregivers had taken a full or partial leave from work to care for their child at home.

Negative experiences for both children and caregivers were associated with discontinued therapeutic services, inability to access medical providers, and low parent ratings of remote-service quality.

Overall, however, the findings suggest that “remote therapeutic and medical services have been helpful for caregivers during the pandemic. Moving forward, we can consider how to leverage this remote-delivery infrastructure to address existing disparities in access to high-quality medical and therapeutic services” for people with neurodevelopmental disorders and their caregivers, Hyde concluded.

Briefing moderator and INSAR scientific program chair Dr. Evdokia Anagnostou noted that people with neurodevelopmental disorders have suffered a “disproportionate burden from both the virus itself and the emergency measures. We’re also learning more about how inequities around the world are affecting those with disabilities, from access to critical healthcare to prioritization for vaccination to mental health support.”

Dr. Anagnostou also noted that the pandemic has significantly impacted autism research. “Labs around the world were shut down and our ability to measure meaningful outcomes was challenged. And, as you may expect, it was tough to separate the impact of the pandemic on the brain and body and the lived experience of autism itself,” said Dr. Anagnostou, professor in the Department of Pediatrics at the University of Toronto, Canada.

“Both researchers and autistic individuals engaged in innovative practices that not only facilitated research during this period, but will impact the way we do research in the future,” she said.

Summing up, Dr. Anagnostou said, “The pandemic has taught us important lessons about new forms of sharing and collaboration. The more than 1,300 accepted abstracts reflect scientific progress and innovation from around the world. They represent research in six continents and 44 countries.”

SOURCE: https://bit.ly/3tiToOI International Society for Autism Research annual meeting, presented May 3, 2021.

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