Promoting Inclusivity in the Telehealth Movement | Organization for Autism Research

Perspective

The emergency department (ED) is often a chaotic, loud, and, frankly, frightening place. Patients may be yelling; monitors and alarms are continuously sounding off; staff are hurrying around; police officers may be present; and overhead pages are squawking every few minutes. There is very little privacy, with patients often separated by a curtain or even evaluated in the hallway. If you are in the waiting room, there is none at all.

Recent research studies have shown that individuals with autism have higher ED utilization as compared to their same age peers (Beverly, 2021; Liu, 2017). Because some level of chaos is the rule rather than the exception in many EDs, it is often far from an ideal setting to provide the optimal level of timely care to any patient. For individuals with autism spectrum disorder (ASD), the stressors of an ED visit are especially high and can be extremely overwhelming. The visit can be more traumatic than the reason for going in the first place.

ED staff do an incredible job caring for each patient in these stressful environments. In some hospitals, EDs have created autism-friendly sections with less sensory stimulation, noise reduction, and special staff training. Unfortunately, these specialized departments are often only found in larger, more populated centers and still do not address the fact that the individual is outside of the comfort and familiarity of their home setting.

 

A More Supportive Alternative: Telehealth

Not all visits to the ED result in a hospital admission, and it is possible to develop solutions other than the ED when providing non-urgent care, as a 2019 research study found. However, medical care outside of the home environment can be highly disruptive to a person on the spectrum. Telehealth offers a way to address many medical concerns in a patient’s home, without a major disruption to the individual’s routine.

In addition, telehealth may provide more effective healthcare. The provision of healthcare, including emergency care, to individuals on the spectrum has been deemed inadequate, as recent research reports have shown (Jensen et al., 2020; Rooth & Olindner, 2016; Zwaigenbaum et al., 2016). Increased utilization of telehealth is one avenue to improve care provision to autistic individuals.

The COVID-19 pandemic induced a significant increase in telehealth utilization, as demonstrated by a 2021 study that had 937 patients complete a survey after their telehealth appointment. Just 10% of these patients had previously utilized telehealth. This study also reported strong satisfaction from both health providers and patients regarding the telehealth experience.

 

Benefits for Patients with Autism

If there has been any silver lining to the pandemic, it has been the greater acceptance and use of telemedicine as a viable means of delivering effective and even superior care to individuals. Arguably, the value of a specialized telemedicine solution for individuals with ASD is even greater. They often have associated complex medical conditions, rely on others for daily living supports, and may require specialized transportation. In addition, it is often difficult to find clinicians that understand the full complement of the medical and non-medical needs of autistic individuals.

Medical care delivered via telehealth has noteworthy benefits for patients with autism and other disabilities, including:

  • Eliminating the need to procure transportation.
  • Reducing personal costs for paid care providers to take an individual to a health appointment.
  • Removing the routine disruption that can result in aberrant behavior.
  • Removing geographical barriers in rural areas.
  • Decreasing the stress of attending a healthcare appointment in an unfamiliar and overstimulating environment with unknown individuals.
  • Making access to doctors that specialize in serving people with disabilities more widely available, increasing the likelihood of a successful telehealth visit. With proper technological training, healthcare providers can assess the patient virtually and provide treatment recommendations.

 

Increasing Accessibility to Telemedicine

To date, telehealth is not universally accessible to people with autism. Some healthcare plans don’t cover these visits or there are not providers who feel confident in treating people with disabilities. Telehealth is an innovative technology that is significantly changing the way that patients and health providers access and deliver healthcare. Just as many in the population have been afforded access to this technology, we should not deprive those vulnerable populations of the same access when in fact they could benefit from the solution at an even greater level.

Increasing availability and use of telehealth for people on the spectrum is possible. Telehealth already has a proven track record for people with ASD including but not limited to conducting language assessments for school-aged children (Sutherland, et al., 2019), providing autism diagnostics  (Reese, et al, 2015; Smith et al, 2017; Juarez et al., 2018), and delivering parent training (Akemoglu et al., 2020; Bearss et al 2018; Benson et al, 2018)

As telehealth becomes universally accessible to society, we must also make it accessible to people with autism so that they are not left behind. People with disabilities, including those with autism, face a high level of healthcare inequity. Let’s ensure that this telehealth movement is inclusive; everyone has a right to effective care.


Maulik TrivediMaulik Trivedi, M.D., FACEP, is a board-certified emergency medicine physician and the chief strategy officer of StationMD,  a physician practice focused on delivering high-quality medical care to people with intellectual and developmental disabilities any time they need it, no matter where they are in the United States.

 

 

 

Patricia WrightPatricia Wright, Ph.D., MPH, is the Senior Vice President of Strategic Initiatives at NEXT for Autism and a member of the OAR Scientific Council.


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