Rethinking autism assessments within the time of COVID-19: Q&A with Bishop, Zwaigenbaum | Spectrum
professor, University of Alberta
Associate professor, University of California, San Francisco
The COVID-19 pandemic has fundamentally changed the perception of autism. Most of the clinical reviews that are critical to understanding, tracking, and delivering help to children with this condition have been relocated online.
This transition to telemedicine has made it easier for families with autistic children who live in remote areas to access some services. But it has also created a digital divide: parents who do not have technological knowledge cannot take full advantage of virtual assessments and other autism-related services.
This, and other strong evidence of social inequalities in the autism community, has led clinicians to ask fundamental questions about the nature of autism assessments: Who are they for? What are your main goals? And how do we develop clinical assessments that can reach people in underserved communities?
A comment published in Autism Research in September attempted to answer these questions. Spectrum spoke to two of the comment’s authors – Lonnie Zwaigenbaum, professor of pediatrics at the University of Alberta in Canada and Somer Bishop, associate professor of psychiatry at the University of California, San Francisco – about how they are rethinking autism ratings.
Spectrum: What was it that interested you in this particular topic?
Lonnie Zwaigenbaum: That comment began with a conversation between Alycia Halladay, Chief Science Officer, Autism Science Foundation, and Sylvie Goldman, Assistant Professor of Neuropsychology at Columbia University, about the challenges of providing quality assessments for autism during the COVID-19 pandemic. Alycia then invited Somer and I, as well as other experienced clinicians and a parent who also works in a professional role with a service organization, to discuss these issues in more detail in the context of patient- and family-centered care.
Somer Bishop: Our discussions initially focused mainly on how the pandemic had disrupted normal clinical practice and the need for technical adjustments such as virtual care. However, those conversations led to the inconvenient realization that our specialty was already grappling with some serious issues related to the delivery of clinical services. The gap between system capacity and demand widened under the pressure of COVID, also because there were already cracks in the foundation.
S: How has the pandemic affected clinicians? Ability to Judge Children on Autism?
LZ: The most obvious challenge is restrictions on personal assessments, which include wearing personal protective equipment, physical distancing and, for some periods, the closure of facilities where assessments are being conducted. A related challenge was the need to quickly migrate to new or unfamiliar diagnostic assessment methods and measures in order to avoid a complete interruption of assessment activities.
SB: On the positive side, many clinical programs have been able to incorporate at least some remote assessment approaches, using telemedicine-based tools that were developed before the pandemic, such as the video-based screener TELE-ASD-PEDS, or that were quickly adapted of existing interventions, such as a brief observation of the symptoms of autism.
S: What social and economic inequalities in the assessment of autism has the pandemic uncovered?
LZ: Even before the pandemic, we faced undeniable racial differences in the detection rate and age diagnosis of autism. Structural racism creates barriers to the diagnosis of autism, including through family bias and discrimination and a lack of diversity among clinicians. Differences in mortality and other health outcomes associated with COVID-19 infection reinforce the need to address systemic and ubiquitous inequalities in the health system. Unequal geographical distribution of specialists also creates further structural barriers for minority families and for families who lack the financial means, transportation, or flexibility of working hours to travel long distances to access autism assessment and treatment services.
SB: With the switch to virtual assessments, families are already experiencing new barriers. Dependence on newer technologies and platforms could inadvertently widen the cultural and socio-economic disparities that already exist – for example through the “digital divide” recognized in other health services.
S: Your article says autism researchers need to rethink the goals of autism assessments for children. What do you mean by that and how could that be achieved?
LZ: Until recently, the autism research literature has mainly focused on the classification accuracy of certain diagnostic measures. Accuracy is important, but not enough. Families bring a broader perspective based on their experience of navigating the health system before and after diagnosis. Parents emphasize the importance of having timely access to a diagnostic assessment, focusing on their autistic child’s strengths and potential in discussing the future, and clearer information about access to services.
SB: These perspectives have found a voice in the most recent practical guidelines. However, with ongoing family feedback and recognition of the differences discussed above, we still have a long way to go to align our research and quality improvement efforts.
S: What are the best approaches researchers and clinicians can take for the future?
LZ: Neither of us has all the answers, and the “best” approaches vary depending on the clinical situation. Although there has been progress in implementing new models of care, including virtual assessments and remote parent-mediated interventions, at some point we will need to take a deep breath together, reflect on how the service landscape has changed, and continue the evaluation process and improve new practices. It is also important to recognize that some of the challenges facing the wider community during the pandemic – isolation and limited access to assessments, interventions, and support services – have long persisted for many autistic people and their families.
SB: We must work to ensure that the supply systems in the future are fair and equitable and that they do not establish or create new systematic barriers or inequalities. We respectfully point out that a hybrid service model can enable the benefits of both online and in-person reviews, but much remains to be done to understand which combinations of approaches are most effective and for whom. In this process, researchers and service providers from all disciplines must work together with those with experience of autism in order to participate in the conception, development and evaluation of valid, yet flexible methods for recording autism.
S: How is the autism community making sure these new approaches to underserved communities work?
LZ: Lisa Ibañez, a researcher at the University of Washington at Seattle and a co-author of the comment, noted that we have a unique opportunity to use this “restart” moment to develop new tools and practices that are valid and make sense for the wide variety of communities in which we operate. It is important that we involve families and clinicians from underserved groups in the development and evaluation process; For example, to ensure that the activities used in assessments are culturally acceptable and can be adjusted as needed.
It is also important to ensure that the validation process includes participants from different backgrounds so that we can assess the extent to which factors such as race, gender and gender can affect the clinical judgment and evaluation of an intervention.
SB: We also need to pay more attention to other aspects of diversity – for example cognitive and language skills, which can drastically affect the validity of assessment tools. More importantly, we need to move assessment practices beyond the narrow focus on psychometrics of a certain level. Instead, we need to evaluate assessment practices more programmatically in terms of access and empowerment and preparation of families to navigate the service system. We must be vigilant and committed to addressing inequalities in relation to all of these outcomes – and ensuring accountability by involving families and clinicians from underserved communities in the oversight and evaluation process.
Quote this article: https://doi.org/10.53053/BICE4832