by ASF COVID-19 Research Grant Recipients Hannah Rea, PhD, University of Washington and Shalini Sivathasan, Emory University
The pandemic has created challenges for families, adults, service providers and researchers. If families had a problem seeing a clinician before the pandemic for an autism evaluation, they have an even harder time now. Service providers and researchers had to figure out how to continue their services, even though they previously had little training in telehealth and tools they could use over telehealth. A comprehensive evaluation is not only necessarily for specific interventions, but it helps families better understand their child and their challenges and strengths. It’s also important for researchers to confirm diagnoses of autism when they’re trying to run studies about autism. Thus, it’s important for families, adults, providers, and researchers to continue these evaluations remotely and to provide accurate information. Evaluations done over the internet through video conferencing may be temporary, but they might not be and some families may even prefer them. It’s important that these evaluations are accurate, valid, that families participate and that clinicians feel they are capturing the information needed to do a thorough evaluation.
Through a COVID Research Grant, the Marcus Autism Center and the University of Washington are collaborating to understand the feasibility and effectiveness of remote telehealth options as well as adaptations to in-person evaluations. These adaptations could be slightly different activities to elicit features of autism in an evaluation, using face masks, or including a broader array of behavioral assessments to better understand both autism features but also cognitive abilities. The Marcus Center is focusing on children, but UW is including adults. Both sites will be collecting information from participants (either themselves or parents) on which adaptations work well and which ones do not. This will play a big role in determining if an adaptation or method of data collection is feasible going forward.
Also, in addition to getting feedback from individuals and families, clinicians will also be asked how they felt about the new mode of assessment. It’s important to understand how these adaptations are interpreted by those that are making that diagnosis. In order to determine if the new adaptations allow us to collect the data needed, the new adaptations will be given to children who have already received an in person assessment, or be retested in adults when they can come in face-to-face. Luckily, this is starting to happen already at many clinical and research sites.
This work is an important step in helping the autism community determine what worked and didn’t work during the pandemic. Working collaboratively across sites will allow us to provide a coherent picture of how assessment procedures have been adapted. We look forward to learning how other sites are adapting their procedures as well. This project, however, will provide an evidence based approach to determine if these changes and adaptations are valid. It will also contribute to the development of better procedures for when social distancing procedures are eased. Can, and how, should some of these adaptations and be used to help with the diagnostic process when we are out of the pandemic? What should stay? What should be dropped? The goal is to not only to understand the validity of these adaptations, but to share what is done, what worked and what did not work across different ages, severity levels and places around the US and in the future, around the world.
Thank you to the families and adults who are going to contribute their valuable time to these studies. The results will help inform clinicians on how to conduct assessments in the future. Also, thank you to ASF for providing support to the studies and the collaboration.
For more information on where the data for the studies is coming from go to: https://psychiatry.uw.edu/project/connectivity-in-the-brain-and-autism-cobra-study/ and https://www.marcus.org/autism-research