Autism Services During a Global Health Crisis
Worried about service interruptions? Important information about telemedicine.
Posted May 04, 2020
Issues with accessing services or assessments during a public health crisis
As I wrote in my last blog, we are living through a public health crisis. Many states in the U.S. (and other countries as well) have strict rules about what businesses are considered "essential" and therefore can remain open, and whether they require social distancing and/or are requiring people to "shelter in place." Although necessary, these policies have caused anxiety among families who are trying to either get an autism assessment for their child and/or to continue with their existing autism services.
Almost all assessment clinics and behavioral therapy providers across the U.S. are closed (as we are not considered "essential" since we do not provide lifesaving medical interventions/care). Therefore, we have all had to get creative and think outside of the box about how to best serve families during this unprecedented time.
When most of us think of "telehealth" or "telemedicine," we think about medical doctors serving geographically isolated communities. However, there has been a recent push (even prior to the current coronavirus crisis) to expand these services to include mental health treatment (e.g., talk therapy, psychiatry) and assessment (e.g., diagnosis). I want to briefly discuss telemedicine and autism assessment/diagnosis first, and then I will cover telemedicine and behavioral therapy.
In terms of autism and telemedicine, researchers have been investigating the feasibility and acceptability of remote assessments for over 10 years. This work started due to the realization that families in rural or under-served areas might experience long wait-lists before being able to get an appointment with a specialist, or they might be able to get an appointment but not have access to reliable transportation. In 2015, researchers at the University of Kansas examined the utility of using video conferencing technology to conduct an autism assessment remotely (e.g., clinicians coached parents on how to engage in specific activities with their children which mirrored in-person clinical assessments). The researchers then compared results from the telemedicine assessment with an interdisciplinary in-person assessment. They found that clinicians' impressions were largely in agreement across assessment types (e.g., clinician judgments about whether a given child had autism or not were reliable between virtual and in-person assessments).
A more recent study (2018) found similar results and suggest that telemedicine procedures to assess children for autism are both feasible and accurate (though some children will still need an in-person evaluation, as telemedicine likely will not be sufficient to render a diagnosis for all children).
Tele-medicine behavioral interventions
For families who already have a child diagnosed with autism, many are concerned about continuity of care and fear that services will be halted entirely. Similar to research on assessment and diagnosis of autism via video-conferencing, research about whether interventions can be successfully implemented remotely has been of interest for years.
A 2012 study trained parents to conduct Functional Communication Training (FCT) with their children in order to reduce problem behaviors. FCT is designed to show children how to use appropriate communication when frustrated or upset rather than engaging in unwanted behaviors. For example, if a student has a tantrum each time he or she tries to solve math problems due to frustration, that student might be taught to ask for help from the teacher or request a break. The overall idea of FCT is that by teaching children appropriate communication techniques, the incidence of problematic behaviors will decrease. Findings from the 2012 study suggested that problem behaviors were reduced by over 90 percent and provided evidence that telemedicine could be used to help train parents of children with ASD how to use intervention strategies.
A 2013 study looked at the feasibility of using telemedicine in order to teach parents how to engage in an imitation intervention with their child (the Early Start Denver Model, or ESDM). ESDM is a relationship-based intervention that is based on the principles of applied behavioral analysis (ABA). Parent-mediated ESDM is designed to be implemented by parents rather than behavioral therapists. The findings suggested that the use of telemedicine supports parent learning and can improve children's behaviors.
Where do we go from here?
Though the research discussed above was mostly done with small groups of people and is therefore considered preliminary, the findings are hopeful. Findings suggest that telemedicine is a feasible alternative to in-person visits for both assessment/diagnosis and behavioral interventions. Granted, this does not mean that telemedicine will work as well as in-person techniques for all children. At least for now, it seems as though there will always be cases where an in-person visit is needed to provide diagnostic clarity and/or to provide help for certain behavioral challenges.
However, the above results provide a road-map for clinicians to follow and should be a hopeful sign for families. In practice, it means that clinics around the country are transitioning to using these methods in order to continue serving children and families while maintaining social distancing and adhering to "shelter-in-place" orders. So if you are the parent or caregiver to a child with autism, reach out to your various service providers to ask about telemedicine/telehealth options in order to continue services. If you are looking for an assessment/diagnosis, call local clinics to ask whether anyone is using these procedures.
Just because clinics are unable to serve families in person does not mean we are entirely unavailable. It might take some time, patience, and creativity, but know that we want to continue to serve families during this uncertain time and are doing our best to get ourselves equipped to use telemedicine.
Reese, R.M., Jamison, T.R., Braun, M. et al. Brief Report: Use of Interactive Television in Identifying Autism in Young Children: Methodology and Preliminary Data. J Autism Dev Disord 45, 1474–1482 (2015). https://doi.org/10.1007/s10803-014-2269-5
Juárez, A.P., Weitlauf, A.S., Nicholson, A. et al. Early Identification of ASD Through Telemedicine: Potential Value for Underserved Populations. J Autism Dev Disord 48, 2601–2610 (2018). https://doi.org/10.1007/s10803-018-3524-y
Wacker, D.P., Lee, J.F., Padilla Dalmau, Y.C. et al. Conducting Functional Communication Training via Telehealth to Reduce the Problem Behavior of Young Children with Autism. J Dev Phys Disabil 25, 35–48 (2013). https://doi.org/10.1007/s10882-012-9314-0
Vismara, L.A., McCormick, C., Young, G.S. et al. Preliminary Findings of a Telehealth Approach to Parent Training in Autism. J Autism Dev Disord 43, 2953–2969 (2013). https://doi.org/10.1007/s10803-013-1841-8