March 5, 2024

Choice Matters: A Conversation about Assent with Kristin Smith, M.Ed., BCBA, LBA

Kristin Smith, M.Ed., BCBA, LBA, is a seasoned behavior analyst with a focus on instructional design and measurement. Her diverse professional background spans the creation and implementation of intervention programs tailored for individuals from 18 months to 40 years old. Kristin's expertise encompasses a broad spectrum of behavioral services, catering to learners with autism, chromosomal deletions, cognitive impairments, learning disabilities, and a range of emotional, behavioral, and complex challenges, including blindness and multiple disabilities. With a deep-seated commitment to promoting learner autonomy and dignity, Kristin is an advocate for efficient, constructional approaches to ABA. In her role as a Senior Instructional Designer at CentralReach, she leverages her proficiency in measurement, instructional design, assessment, and data analysis to enhance and streamline the learning experience.

Assent has gained prominence in the field of ABA, particularly following the release of the updated Ethics Code for Behavior Analysts, which now mandates that Board Certified Behavior Analysts (BCBAs) obtain assent from clients when applicable (2.11). An additional and crucial consideration relevant to this discussion is that many autistic and developmentally disabled individuals are at heightened risk for exploitation, including sexual abuse. As such, we must build skills that foster autonomy, self-determination, and self-advocacy. These competencies protect against victimization and empower those we serve with authority over their bodies and choices.

I am both honored and excited to discuss this important topic with Kristin Smith, M.Ed., BCBA, LBA, who, together with Cas A. Breaux, M.A., M.S., BCBA, LBA, co-authored an article exploring assent in the context of behavior analysis that is a must-read for practitioners looking to integrate assent-based practices into their clinical work.

While the Ethics Code now addresses assent, as you discuss in your article, assent-based practice is not yet widely practiced in ABA. To guide our conversation, could you explain the difference between assent and consent and how they are obtained and respected in service delivery?

Informed consent is a familiar concept for many, referring to the legal agreement to participate in a service after being made aware of the procedures, potential risks and benefits, and how the service recipient’s data will be used. Most, if not all, medical and healthcare providers have strict informed consent standards before initiating treatment. While informed consent must be provided by a legally authorized individual like a parent or guardian, assent refers to the continuous agreement of the actual service recipient at the time of service. This becomes especially relevant for individuals under age 18 or with cognitive or communicative differences who cannot independently provide consent. The term “assent withdrawal” specifically refers to the revocation of assent, whereby a learner no longer agrees to participate. 

Both consent and assent can be revoked at any time during treatment. Though consent is often obtained formally at the start of services, informed consent should be obtained throughout treatment, as new procedures are introduced, new outcomes are discussed, and new treatment goals are introduced.

Overall, informed consent and assent complement each other in the service delivery process – legal guardians provide initial permission to initiate interventions based on information disclosed to them, while individuals receiving services maintain the ethical right to continuously indicate their own choices surrounding active participation. This dynamic of authorized oversight combined with individual autonomy upholds dignity and shared decision-making.

A critical distinction emerges in how consent versus assent is confirmed and upheld in the clinical setting. Again, informed consent is formally obtained as part of initiating services, with ethical and legal standards requiring its presence to begin any behavioral intervention. Revoking this consent at any time leads to the immediate halting of treatment. Even questionable consent means ceasing services until overtly re-confirmed. However, the same rigor and immediacy of consequence do not consistently occur for learner assent being given or withdrawn during direct services. Though considered best practice, seeking voluntary engagement does not carry the same binding enforcement as informed guardian consent, and remains largely discretionary within present ABA delivery systems.

To highlight the difference between assent-based practice and traditional ABA, I've borrowed a sentence from your article: “When a learner withdraws assent, the practitioner’s initial step is to reinforce that withdrawal by terminating the treatment conditions to which the learner does not assent.” This marks a significant paradigm shift, as this recommendation likely contradicts the training of many behavior analysts and may come as a surprise to parents and educators, if services are being provided in the school setting. Could you explain the rationale behind this approach?

The phrasing of "terminating conditions" upon assent withdrawal can seem jarring initially. In practice, this refers to pausing the treatment conditions to assess and address factors influencing assent withdrawal. My brilliant co-author Cas Breaux and I included a framework in our initial publication, outlining responsive routes clinicians can take to modify conditions based on insights into barriers. This framework, by its existence, demonstrates that assent withdrawal does not inherently mean ceasing all work or support that day. At the core, this approach represents clinicians responding conditionally to our learners signifying something is amiss in the current treatment arrangement. By briefly terminating those specific conditions and then modifying plans through collaboration with our learner, we can uphold learner dignity while working together to find an optimal and comfortable path forward. 

Critically, this process avoids: (1) intentionally or unintentionally using coercive compliance tactics, (2) forcing participation against learner will, and (3) placing self-advocacy on extinction or making its delivery punishing. When properly followed, it provides an avenue to strengthen learner agency and autonomy within the therapeutic relationship.

Given its emphasis on choice, an assent-based approach appears to align with other learner-led interventions. However, as discussed in your article, providing choices is not enough; data collection plays a pivotal role. Could you provide an overview of the different measures needed for assent-based intervention and how they contribute to skill building?

I appreciate the opportunity to discuss this, as skill-building is an often overlooked yet critical component of assent-based intervention in our clinical practice. BCBAs strive to profoundly impact their clients' lives by providing a supportive and nurturing therapeutic environment and achieving meaningful outcomes as outlined in their ABA treatment plans. There's a common misconception that these objectives conflict with the principles of assent-based intervention. However, assent-based intervention is integral to the therapeutic process, not an impediment to it. It doesn't preclude learners from working towards or achieving treatment goals. Instead, it involves teaching choice-making, essential learning skills, and self-advocacy, all within learner-validated treatment conditions. Assent-focused skill-building generally encompasses four broad areas: communicating assent/withdrawal, self-advocacy, resilience, and learning skills.

Data collection is a pivotal first step for behavior analysts implementing assent-based interventions, as it determines what needs to be taught, and in what order. As central components of our practice, data not only provide a large-scale overview of learner progress and shifts in behavior and quality of life but also offer detailed insights into the nuances of each learner's experiences. Analyzing data on learner assent, withdrawal, and related skills allows us to adjust procedures to better suit our learners, identify areas needing further skill development, and assess the effectiveness of our interventions.

While specific metrics should be tailored to each learner's unique needs and the function of their behavior, we can generally categorize data collection into: communicating assent/withdrawal, staff responsiveness, and the suitability of implemented conditions. Examples of such metrics might include the frequency of staff evaluating learner assent, instances of assent withdrawal, the effectiveness of strategies or accommodations, and methods for teaching new forms of expressing assent or withdrawal, like pointing to a stop sign, verbally saying "stop," or using sign language for "all done." This approach underscores the importance of flexibility and responsiveness in fostering an environment that respects and upholds learner autonomy.

How does assent-based intervention relate to human rights and ethical service delivery?

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the Ethics Code for Behavior Analysts both emphasize the fundamental rights of individuals to express preferences and take the lead in their own support systems. These documents highlight the importance of autonomy in decision-making, liberty, voluntary participation, and the careful consideration of individual perspectives. Despite these affirmations, ableist assumptions (whether intentional or not) have historically impeded the full realization of these ideals. Obtaining assent and respecting an individual's right to assent withdraw is a critical step towards re-centering learner voices, aligning with both mandated human rights and ethical principles. By implementing formal assent protocols, ABA interventions can more effectively empower individuals, promoting a model where dignity is derived from presuming competence and ensuring choices are continuous and not merely conditional.

The resistance to integrating assent-based practices in ABA therapy presents a significant challenge, often reflecting a contradiction to the principles outlined in the UNCRPD. The reluctance to offer unconditional choice and autonomy to individuals with disabilities frequently stems from a belief in knowing what is best for the individual or prioritizing other treatment goals above the autonomy and independence of the learner. This suggests a perceived hierarchy of therapy objectives and underestimates the importance of assent-based practices in teaching essential behaviors like self-advocacy and resilience. These practices are crucial for developing robust, enduring skills necessary for active participation in instructional settings.

Behavior analysts should be sensitive to cultural factors when collaborating with families. Understanding that some cultural beliefs may not align with an assent-based approach, what guidance would you offer to a practitioner navigating a situation where a family does not support an assent-based approach? Similarly, what information or insights might you share with a family hesitant to engage in this approach?

When engaging with families about the adoption of assent-based practices, it is essential to initiate the conversation with compassion and an appreciation for the cultural context that shapes their lives. Our role as clinicians isn't to alter a family's cultural fabric but to understand it and find alignment between their values, desired outcomes, and the principles of assent-based interventions. It's about crafting skills that center the learner's autonomy within therapy sessions and contribute to their success in everyday life. Success, as defined within the context of the family's culture—both immediate and communal—necessitates a thorough understanding of their dynamics and intentional programming that connects the learner's abilities, particularly those related to assent, withdrawal of assent, resilience, and self-advocacy, to the practical aspects of their day-to-day experiences.

In these crucial discussions, it's important to establish the desired outcomes for both the parents and the learners, exploring how assent-based practices might align with or differ from those goals, with a particular focus on promoting independence, self-advocacy, and resilience. Discussing family values is equally important, as it allows clinicians to guide parents in expressing what is meaningful to them and to show how assent-based approaches can reinforce these values. The strategic use of data further supports this discussion, offering tangible proof of how assent-based methods are driving progress toward the outcomes that families are looking to achieve. This collaborative method helps forge a connection between professional recommendations and familial values, cultivating a space of shared respect and understanding.

Ultimately, the aim is not to coerce families into accepting assent-based practices but to thoughtfully demonstrate how these approaches can enhance their child's well-being. Assent-based intervention is fundamentally about nurturing behaviors that allow learners to indicate their preferences and to develop resilience. This expectation is a standard we uphold for all children, including those with autism, and is attainable for all when we collaborate closely with families and their communities.

There are instances when assent-based practice and a family's values may not align to a point where collaboration is possible. In my international consultations, I have encountered such situations firsthand. As ethical practitioners, we must recognize when informed consent is not present and, having considered all alternatives, proceed with a thorough discharge and transition plan. Although it is not the desired outcome, acknowledging the misalignment and acting accordingly is sometimes the most responsible course of action.

In your article, you touch on concerns raised by the autistic community regarding ABA interventions. Additionally, you express the opinion that an assent-based approach is essential for BCBAs to fully adhere to the Ethics Code. Considering that assent-based practices are not yet widely implemented, how can parents ensure their child's providers are utilizing an assent-based approach to safeguard against concerns voiced by the autistic community?

Valid concerns exist around ABA and learner assent, voiced by the autistic community. First and foremost, parents should begin by understanding that they are consumers of ABA services, and no services can begin (or continue) without their informed consent. As such, parents can advocate by asking providers key questions. First, since no formal definition of assent-based ABA exists, parents inquire about specific practices used to honor learner assent and choice, along with scope and limitations. Second, request details on staff training procedures and systems ensuring appropriate and consistent assent-based practices. Next, ask how the organization defines assent and assent withdrawal for each learner. Finally, understand how and when communication of assent and assent withdrawal is directly taught as a skill.

Vetting providers on assent should be just as expected as asking about experience and methods when selecting any service for a child. Though waitlists are long, it remains important to research an organization’s alignment to learner assent and empowerment alongside clinical quality. Advocating through open-ended questions will clarify if true assent-based procedures and choice are priorities. Parents must remember that they can ask these questions at any point in time- before starting with an organization, a year into services, or even years into services. There is an opportunity for parents to elevate expectations and drive change through their informed consumer voices. This can catalyze stronger assent practices, as has occurred for other once-controversial ABA shifts. Discernment ensures children receive quality behavioral services focused on their dignity and autonomy.

What is your definition of a good behavior analyst? 

I love this question! My answer today is certainly different than what I might have answered earlier in my career. I am going to switch up and talk about what makes a successful behavior analyst because I think these two concepts are synonymous. In the past, I would have said a successful behavior analyst collaborates with clients to produce socially significant outcomes, has excellent data analysis skills, is ethical, and is a strong instructional designer. Now, I believe being a successful behavior analyst goes beyond the outcomes of our clients and these learned “BCBA” skills. To me, success is defined by the quality and lasting impact of our interactions, the evolution of our clinical skills, the relationships we build with others, and the size of magnitude of the positive impact our services have on clients, and those in their lives. There are three features that I believe, combined, produce this type of success.

  • #1: Curiosity
    To me, a successful behavior analyst approaches their work, and more globally, life, with a genuine sense of curiosity. This curiosity isn't just about seeking answers; it's also about embracing the humility to recognize what we don't yet know. This is exemplified in how we listen and respond to others during IEP meetings, interact with other disciplines, promote dignity with our clients, listen to critics of our field, and interact with the families of our clients. Being curious and open-minded creates the opportunity for behavior analysts to continually learn, and collaborate, and fosters an environment of growth and mutual understanding, essential for effective service delivery. I do not believe this is something that is commonly encouraged in our course work and supervised experience, except by a lucky few, and I will be the first to acknowledge that this is a daily intentional practice for me, in both my job and personal life!

  • #2: Analytical Thinking
    In addition to curiosity, a successful behavior analyst brings analytical thinking to their practice, evaluating information and experiences thoughtfully and logically. This analytical approach ensures that they are always refining their methods and staying grounded in evidence-based practices. There is an important reason, after all, for that second “A” in ABA!

  • #3: Creativity
    The final feature of a successful behavior analyst is creativity. I believe creativity is at its best at the intersection of curiosity and analytical reasoning. With creativity, a behavior analyst can forge new pathways, combining existing ideas in fresh and innovative ways to meet the unique needs of each client.

What is one way neurotypicals can foster greater inclusivity for autistic individuals?

In creating inclusive disability services, neurotypicals need to fully celebrate the idea that "being different is good." This means more than just accepting differences; it means appreciating them as strengths that enrich the community. This includes promoting and valuing diverse ways of thinking, moving, and learning because they make our culture more dynamic. Instead of expecting everyone to fit into one mold, the community recognizes that each person learns and engages in their own way. Whether it's through moving around, fidgeting, or using alternative methods, these differences are not just okay—they're great. Inclusivity goes beyond just making space for autistic individuals—it means ensuring that everyone feels valued and respected, and it starts with building a welcoming environment that celebrates diversity.

Can you recommend any resources for autistics, parents, or the providers who support them? 

Here are various resources I’ve participated in creating, or find extremely valuable in my own practice: 

Books:

Articles:

  • Breaux, C.A., & Smith, K. (2023). Assent in applied behaviour analysis and positive behaviour support: Ethical considerations and practical recommendations. International Journal of Developmental Disabilities, 69(1):111-121. doi: 10.1080/20473869.2022.2144969

  • Breaux, C.A., & Smith, K. (2023). Pushing past distractions to move toward assent-based practice and science: A response to Newcomb and Wine. International Journal of Developmental Disabilities, 69, 630-632. doi: 10.1080/20473869.2023.2206722

  • De Lourdes Levy, M., Larcher, V., & Kurz, R. (2003). Informed consent/assent in children. Statement of the Ethics Working Group of the Confederation of European Specialists in Pediatrics (CESP). European Journal of Pediatrics, 162(9), 629-633. doi: 10.1007/s00431-003-1193-z

  • Gover, H.C., Hanley, G.P., Ruppel, K.W., Landa, R.K., & Marcus J. (2023). Prioritizing choice and assent in the assessment and treatment of food selectivity. International Journal of Developmental Disabilities, 69(1):53-65. doi: 10.1080/20473869.2022.2123196

  • Rajaraman, A., Austin, J. L., & Gover, H. C. (2023). A practitioner’s guide to emphasizing choice-making opportunities in behavioral services provided to individuals with intellectual and developmental disabilities. International Journal of Developmental Disabilities, 69(1), 101-110. doi: 10.1080/20473869.2022.2117911

  • Self, J., Coddington, J., Foli, K., & Braswell, M. (2017). Assent in pediatric patients. Nursing Forum, 52(4), 366-376. doi: 10.1111/nuf.12206

Organizations:

  • Do Better Collective
    There are a variety of paid and free resources available through Do Better Collective.

  • Octave
    An organization founded by behavior analysts Liz Lefebre and Amy Evans, dedicated to providing training on precision teaching, assent-based practices, and instructional design.

Trainings:

Connect with Kristin on LinkedIn to learn more about her work.