ARE YOU READY TO START CONSIDERING PARTICIPATION FROM THE NEURODIVERGENT PERSPECTIVE?
For most people, walking into a doctor’s office is a mundane experience. But how would you feel if walking into a doctor’s office felt like an unpredictable, sensory nightmare? You push open the heavy metal door and it quickly slams loudly behind you. Immediately, the lowered temperature in the room raises the hairs on your arms. Stark, fluorescent white lights emit a buzzing that seems ambient at first, but quickly becomes growing competition to the inflections of multiple voices in the room. Somehow the ongoing and intermittent conversations play jump rope with beeping machinery and an absurdly loud ticking clock. What starts out as creeping dread turns into an inferno and perspiration as the anxiety sets in and positions itself to take over. In a matter of moments this “regular” doctor’s visit becomes an overwhelming experience.
Overload of sensory stimuli alone can be hard on anyone, yet many people can tune most of it out. But for those of us who are neurodivergent, it is everything, always, all the time. It is overwhelming experiences like these that cause our minds to shut down or withdraw. Understanding and following verbal instructions for a neurodivergent person becomes as difficult as separating a single note from an entire symphony. This response to overwhelming situations can make us seem as though we are unable or unwilling to follow instructions, fueling the myth that we are “difficult” patients.
Neurodivergent people exist across every demographic and patient population; however, misconceptions and stereotypes perpetuate social and systemic barriers that leave us underrepresented in most spheres of society. This is amplified in clinical settings, where we are often dismissed or overlooked for being “difficult patients.”
As awareness of what it means to be neurodivergent grows, there is mounting evidence that interventions tested solely on neurotypical populations may not be transferrable to neurodivergent individuals.1,2 These factors combined with a high prevalence of comorbid conditions underscore the need for a better understanding of how different medical interventions affect the diverse neurodivergent population.
There is a misconception that conducting large-scale, randomized, controlled trials with neurodivergent populations may be overly challenging.3 However, this mentality is unfair and counterproductive. What might be perceived as “difficult” behavior is often a result of unmet needs, misunderstandings, or feeling dysregulated, distressed, or overwhelmed in a space where there is a lack of appropriate accommodations. This feeling can be further exacerbated when layered with worry that your reported symptoms will be misinterpreted as “not that bad” because “you don’t look upset” or have not used the right words to express pain or emotions.
While the experiences shared in this piece are of one neurodivergent person, for most of us, the healthcare environment can feel hostile and like one of the least accommodating spaces.
The good news is you can be a force for change. There are thoughtful strategies and accommodations that can help promote inclusion of neurodiverse participants while considering their varied needs.
In the face of sensory overwhelm, repetition and context can help overcome instances where it might seem like we are not listening. Simplified consent forms, multiple means and styles of communication, and clear, jargon-free explanations of the study can lead to better engagement, interest, and understanding. Stepwise written dosing instructions, explanations and rationale of assessments, and frequent appointment reminders can be a lifeline when short-term memory is impacted by sensory overwhelm. This is equally important for long-term participation and retention.
Unexpected changes in appointments, unfamiliar assessments, or new healthcare providers may create additional anxiety, potentially leading to behaviors that have historically been misinterpreted as “difficult.” Offering a little patience and extra time to regulate ourselves and providing a quiet and comfortable space are simple accommodations that can make all the difference.
In the realm of clinical research, inclusion of neurodivergent individuals is much bigger than an ethical responsibility. It is a crucial step towards medical advancements that are applicable to the full spectrum of human diversity.
Are you ready to start considering participation from the neurodivergent perspective?
We invite you to join us as we explore the stories of underrepresented patient groups. Their stories will close gaps in knowledge, uncover barriers to participation, and inform strategies to create equitable and accessible studies as we strive to ignite change and redefine clinical study representation. Stay tuned…
Sexual and gender minority populations—in a world where constructs surrounding sex and gender are ever evolving, has the world of clinical trials considered the inevitable shift/change in patient demographics in the next 10–20 years? Let’s not wait to start planning.
Cultural and religious beliefs—cultural mosaic or melting pot: which best describes how cultural differences and religious beliefs are viewed and managed in clinical research? Join us as we explore how one’s background, faith, and religious practices drive perceptions, acceptance, and actions toward clinical trials as a treatment option.
Digital equity—regardless of socioeconomic status, all should have equal access to modern digital technology, the internet, and digital literacy training. It ensures that everyone can fully participate in the digital world, including having the skills and resources necessary to use digital technology effectively. This is crucial in today’s world where much of education, work, and communication happens online.
REFERENCES
1. Linden A, Best L, Elise F, et al. Benefits and harms of interventions to improve anxiety, depression, and other mental health outcomes for autistic people: A systematic review and network meta-analysis of randomised controlled trials. Autism
2023;27:7–30. https://doi.org/10.1177/13623613221117931
2. National Institute for Health and Care Excellence. Autism spectrum disorder in adults: diagnosis and management. Clinical guideline [CG142]. Available at: https://www.nice.org.uk/guidance/cg142/chapter/Recommendations#interventions-for-coexisting-mental-disorders. Accessed October 2024.
3. Beasant L, Realpe A, Douglas S, Kenny L, Rai D, Mills N. Autistic adults’ views on the design and processes within randomised controlled trials: The APRiCoT study. Autism 2024;28:1540–1550. https://doi.org/10.1177/13623613231202432