Ethics and Social Validity: Considering Neurodiversity in Intervention is Essential with Joy Johnson
The field of ABA is undergoing many paradigm shifts alongside societal movements such as celebrating neurodiversity. It is critical for BCBAs and clinicians working in the field of ABA to realize the importance of honoring Autistic clients' roles as active leads rather than passive recipients of services. BCBAJoy Johnson shared her personal journey as an Autistic woman who was non-vocal for the first 12 years of her life. Joy brought to light the importance of neurodiversity, particularly that behaviors that are often deemed maladaptive may in fact be functional to the individual. Joy discussed how many of her skills were overlooked and overshadowed by perceived “aberrant” behaviors. Joy discussed the need for assent, autistic autonomy, and social validity - none of which are new concepts in the field but have received little attention both in research and in the applied setting. Joy, in addition to being a BCBA is an author, professor, and has been an ABAI task force member, asserts that clinicians should involve the Autistic community as key stakeholders, in order to determine what should and should not be targeted for intervention, and to help facilitate neurodiverse directives.
The primary focus of the Professional Learning Community (PLC) following Joy’s presentation was to discuss her key points, assess ABA practices and the barriers that present (e.g., requirements from funding sources), and to determine ways in which we can develop repertoires that are more inclusive. Joy’s conversation was loaded with examples and takeaways but the topic of communication resonated throughout the PLC meetings. The PLC spent a great deal of time examining how all behavior is communication and as analyzers of behavior we need to view all behaviors non-judgmentally. Said another way, we can often be rigid in our analysis of behaviors as we categorize them as “appropriate” and “maladaptive”. Perhaps not enough time is spent assessing the context in which this behavior occurs as we are so quick to determine a function and create an intervention. Similarly, when it comes to verbal behavior, the emphasis is placed mainly on vocal behavior and we may miss opportunities in which a client is in fact communicating via another modality. Because vocal communication is often the goal, clinicians may discount the use of sign language or augmentative devices which may be preferred by the client.
Joy also mentioned how reports and treatment plans are often written in a way that highlights the client’s weaknesses and deficits with little to no mention of what the individual can do. While this may be the manner in which we are required to submit reports and get funding (e.g., insurance hours), those documents can be damaging to the client. Joy shared that she has read reports created about her and they are hurtful to read because they do not capture the essence of who she is and what is capable of. Instead of writing reports and other documents about clients, the PLC discussed ways in which clinicians could write reports for clients. Writing a report for a client with their skills highlighted can serve as a guide intervention by capitalizing on their strengths. To the extent possible, clinicians should include clients in the writing of the report (e.g., soliciting feedback on their perceived areas of strength, what skills they choose to target, and their acceptance of the interventions). As we write and review reports we can ask ourselves: How would my client feel if they read this? How do these words impact caregivers? What message are we sending to society at large if we as clinicians maintain this abelistic tone in our reporting and communications about our clients? Some strategies discussed for remediating this include: start from a place of what the client can do, for each skill deficit include 1-2 strengths of the client, and talk about the person in a meaningful way (e.g., likes, interests, positive traits).
The concept of masking or social camouflaging was addressed as well. Joy discussed the many ways in which suppressing one’s “autistic behaviors” (i.e., stereotypy or stimming) can be damaging to the autistic individual’s identity, mental and physical health, and prevent them from connecting with others and building relationships. The PLC discussed the notion that behaviors deemed as “inappropriate” or “socially stigmatizing” are constructed by the societal norms created by the allistic community. Stereotypic behaviors are not meant to be extinguished and can be associated with coping mechanisms that serve a function for the individual. Rather than attempt to minimize these behaviors, clinicians should gain an understanding of when they occur, under what conditions do the behaviors increase or decrease, and what is the function this behavior is serving the individual. All too often is the assumption made that stereotypies are self-stimulatory and therefore maladaptive resulting in the need for intervention.
