Everyone deserves to have a say in their own care regardless of age or perceived ability; this is where assent comes in. Assent-based procedures, most common in autism and intellectual and developmental disabilities (IDD) care, focus on improving the fit between the environment and the individual, offering accommodations where necessary to confirm a learner feels comfortable, safe, and respected every step of the way. When practicing assent-based care, those delivering services must remember that assent can be revoked at any time. Additionally, throughout the care process, professionals should ensure that a learner understands what it means to assent – or withdraw assent – from care at any given point, making sure to honor assent withdrawal behaviors. When serving vulnerable populations, care professionals throughout the healthcare industry can leverage assent to improve the relation between patient and provider to further be aware of and address ever-evolving patient needs and ensure that care is appropriate and ethical.
Assent within autism and IDD care
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Assent is a vital aspect in neurodiversity-informed applied behavioral analysis (ABA), a form of therapy that continuously and rigorously reflects the tenants of the neurodiversity movement. This movement asserts that neurodiversity, a range of differences in brain function and cognition, is not something that needs to be changed or cured. With these principles in mind, neurodiversity-informed ABA takes an individualized and strength-based approach, embracing both creative and flexible methods of care.
25 to 30% of individuals with autism spectrum disorder (ASD) are perceived to be minimally verbal, making assent sometimes difficult to obtain in clinical settings. However, in the case of autism and IDD, assent-based care can mean the difference between fostering a consensual therapy space or creating trauma for learners. Abuse rates among individuals with ASD are concerningly high with 58.5% experiencing physical violence. In assent-based autism and IDD care, there is an emphasis on actively seeking to obtain a patient or learner’s assent. Educators, therapy providers, and caregivers continuously check in and respond to a learner’s assent or withdrawal of assent. Learner participation is vital in producing positive learning outcomes; if they are uncomfortable and disengaged, little progress will be made.
This approach teaches educators and therapy providers how to identify and take data on assent and withdrawal of assent for learners and how to find the appropriate next step in each situation. For example, when a learner withdraws assent, there are a few options an educator or therapy provider can take. One can make appropriate environmental accommodations to make a learner more comfortable, immediately stop treatment and recommence under new circumstances later, or terminate treatment altogether. With a learner-first assent-based approach, professionals can work with learners to problem solve, collaborating on treatment methods to make sure everyone is comfortable.
Broader implications of assent
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By broadening the brush and applying the notion of asking learners, individuals with autism and IDD receiving care, for assent to patients across healthcare, there is an opportunity to further improve the patient experience. Healthcare is moving towards a more tailored and precise approach to fully and effectively address patient needs. If patients do not feel comfortable or safe in an environment, their engagement and experience will suffer. Asking for and honoring assent establishes mutual respect between patients and care providers. Honoring assent helps build patient trust, which can improve long term care outcomes.
Often, when individuals are unable to consent to care, if they are underage, nonverbal, or have certain health conditions such as dementia or Alzheimer’s disease that limit their understanding and judgment, only a parent or caregiver’s consent is needed, overlooking assent. Biases and misconceptions already persist within the healthcare space such as ineffectual bias which occurs when clinicals assume individuals with disabilities have lower levels of agency or competency than non-disabled individuals, leading to unequal treatment. Varied communication needs stemming from certain IDDs and conditions can even cause misdiagnosis and inadequate treatment. Assent enables individuals to have body autonomy and self-advocacy, establishing a respectful relationship between patient and caregiver, thus improving treatment and outcomes.
Embracing an assent-based care approach can positively affect therapists, educators, and healthcare workers overall. While the demand for BCBAs increased by 23% from 2021 to 2022, labor shortages and burnout within the field persist. In the broader healthcare industry, 70% of clinical support staff experience moderate to severe burnout. When forced to deliver care without a patient’s assent, burnout can be enhanced by burdening professionals with conflicting feelings and leaving them emotionally drained. Overall, ensuring everyone in the care process is comfortable can improve both the patient and caregiver experience.
Addressing ever-evolving patient needs
Both autism and IDD care and the healthcare industry have an opportunity to evolve their approach to caring for individuals with disabilities – starting by prioritizing respectful care. To do this, assent-based care must become common practice when serving individuals with disabilities. Currently, only 40.7 percent of physicians are very confident about providing the same quality of care to individuals with disabilities as to patients without disabilities. This gap creates inequities in care for people with disabilities.
Providers can start by recognizing ableist rhetoric, harmful assumptions and stereotypes, as well as implicit biases that affect care delivery, causing poorer care outcomes for individuals with disabilities. Every patient, learner, and individual regardless of age, condition, gender, ability, background, or experience wants care delivered in a culturally-respectful way that improves their outcomes and experience. Patients deserve agency over their own bodies and care, and clinicians, educators, and caregivers can be those catalysts needed to promote disability rights in healthcare practices across the industry.
Photo: Tara Moore, Getty Images
Cas Breaux (they/them) has a Master of Arts degree in psychology, a Master of Science degree in special education, and is a board certified behavior analyst and a licensed behavior therapist in both New York and Louisiana. Cas is the Manager of Educational Content Development for CR Institute at CentralReach and is the primary content creator for ABA Knowledge Builder, the assent-based and neurodiversity-informed test prep and competency solution, where they have created over 20 hours of content centered on ABA, assent, dignity, and inclusion.
Cas has over 15 years of experience in the behavioral field, working in both public schools and private clinics. Since 2013, they have served as adjunct faculty at the Center for Behavior Analysis for the University of West Florida. Cas’s goal is to help the field of applied behavior analysis become more assent-based and neurodiversity-informed, through a lens of anti-ableism.
