This year’s first podcast dedicated to COVID issues explores both caregiver and clinician satisfaction with telehealth. New studies explore this satisfaction with assessment as well as psychiatric interventions. Also, as a follow up to the INSAR presentations on resiliency in mental health, a new study from Canada explains what may be at the core of this resiliency. Finally – why are some autistic people still not getting vaccinated? Listen to the podcast here.
The COVID-19 pandemic has posed unique challenges for families and caregivers, as well as for autism-focused clinicians, who are faced with providing a thorough and accurate evaluation of children’s specific needs and diagnoses in the absence of in-person assessment tools. The shift to telehealth assessments has challenged clinicians to reconsider approaches and assumptions that underlie the diagnostic assessment process, and to adopt new ways of individualizing standard assessments according to family and child needs. Mandates for physical distancing have uncovered deficiencies in diagnostic practices for suspected autism and have illuminated biases that have posed obstacles preventing children and families from receiving the services that they truly need. This Commentary outlines several considerations for improving diagnostic practices as we move forward from the current pandemic and continue to strive to build an adaptable, sustainable, equitable, and family-centered system of care. LAY SUMMARY: Physical distancing and the abrupt end to in-person services for many children on the autism spectrum has forced clinicians to examine the existing challenges with autism spectrum disorder (ASD) diagnostic assessment and consider things they want to keep and things that should be changed in the years ahead. New approaches such as telehealth both alleviated and exacerbated existing disparities, and brought into stark focus the importance of equitable and timely access to family-centered care. This commentary suggests ways of improving clinical practices related to ASD assessment to continue along this path.
Keywords: assessment; autism; challenges; children; diagnosis; disparities; pandemic.
The COVID-19 pandemic has disrupted autism research and services. Early career researchers (ECRs) are particularly vulnerable to the impact of the pandemic on job security and career development. The goal of this study was to capture the challenges ECRs are facing during the pandemic and the supports that are needed for career development and research. ECRs were invited to complete an online survey that focused on four major areas; the impact of COVID-19 on their research; changes in productivity due to COVID-19; changes to training due to COVID-19; and current mental health. 150 ECRs were eligible and provided sufficient data for inclusion. All but one ECRs reported their research had been negatively impacted by the pandemic. Reductions in productivity were reported by 85% of ECRs. The biggest impacts included recruitment of participants, increased needs at home and personal mental health. ECRs reported a 3-fold increase in burnout, as well as increased anxiety. ECR supports, such as funding, flexibility, and tenure extensions, are required to ensure ASD research does not suffer from a “lost generation” of researchers. LAY SUMMARY: The COVID-19 pandemic has had negative impacts on research around the world. Loss of productivity impedes autism research discoveries. However, researchers in the earliest phases of their career, specifically postdoctoral fellows through individuals in assistant professor (or equivalent) positions, are particularly vulnerable to long-lasting effects of pandemic-related disruptions which may limit their ability to continue as autism researchers. This survey highlights the needs of this group and identifies mechanisms by which these early career researchers may be supported in this time. This is critical to ensure the next generation of ASD researchers and clinician scientists continue on the path to advancing understanding of autism in the decades to come.
Keywords: COVID-19; autism research; early career researchers.
This week is a “bric-a-brac”: of topics. They include: 1. how COVID-19 is especially dangerous for people with neurodevelopmental disorders; 2. how certain genes associated with neurodevelopmental disorders can affect other body functions other than the brain (like the digestive system and kidney function and metabolism); and finally, 3. why parents think their autistic children are so great. No overall theme, just information we hope you can use. Listen to the podcast here.
Background: COVID-19 restrictions have significantly limited access to in-person educational and healthcare services for all, including individuals with intellectual and developmental disabilities (IDDs). The objectives of this online survey that included both national and international families were to capture changes in access to healthcare and educational services for individuals with IDDs that occurred shortly after restrictions were initiated and to survey families on resources that could improve services for these individuals.
Methods: This was an online survey for caregivers of individuals with (1) a genetic diagnosis and (2) a neurodevelopmental diagnosis, including developmental delay, intellectual disability, autism spectrum disorder or epilepsy. The survey assessed (1) demographics, (2) changes in access to educational and healthcare services and (3) available and preferred resources to help families navigate the changes in service allocation.
Results: Of the 818 responses (669 within the USA and 149 outside of the USA), most families reported a loss of at least some educational or healthcare services. Seventy-four per cent of parents reported that their child lost access to at least one therapy or education service, and 36% of respondents lost access to a healthcare provider. Only 56% reported that their child received at least some continued services through tele-education. Those that needed to access healthcare providers did so primarily through telemedicine. Telehealth (both tele-education and telemedicine) was reported to be helpful when available, and caregivers most often endorsed a need for an augmentation of these remote delivery services, such as 1:1 videoconference sessions, as well as increased access to 1:1 aides in the home.
Conclusions: COVID-19 restrictions have greatly affected access to services for individuals with syndromic IDDs. Telehealth may provide opportunities for delivery of care and education in a sustainable way, not only as restrictions endure but also after they have been lifted.
Keywords: Autism; COVID-19; Genetics; Intellectual disability; Parents.