Abstract
Background: Autism Spectrum Disorder (ASD) is classified as a neurological brain-based disorder impacting an individual ability to communicate, socialize, and manage behavioral symptoms to varying degrees. The science of behaviorism is rooted in three branches of experimental analysis of behavior, behavior analysis, and applied behavior analysis (ABA). In emerging years, ABA services have been recommended as a form of treatment for individuals with ASD. Utilizing a scientific approach to research the relationship between behavior and the environment, through the manipulation of environmental variables paired with concepts of conditioning and reinforcement, ABA is recommended to aid individuals through challenges that may negatively impact their daily life while also supporting the improvement of socially significant behaviors.MethodsIn any event ABA services are recommended, families are expected to adhere to a recommended number of treatment service hours. Historically, it is believed treatment services hours are needed to occur at an intensive rate in order to produce any significant improvements. However all too commonly, treatment service hours are recommended with little to no consideration for what types of social determinants may affect a family ability to adhere to a full treatment service hour recommendation. In time, the gap between recommended versus accepted treatment service hours frequently leaves families in question as to if their efforts will ever produce any significant improvements for their child and family. For this reason, clinicians are urged to assess evidence-based outcomes versus perceived outcomes to support families in closing the gap in question, developing a service outcome that is equally meaningful and significant to their child and family.
Approach: Before clinicians continue to advocate for full treatment adherence to produce meaningful outcomes, it is recommended clinicians consider the assessment of evidence-based outcomes compared to perceived outcomes of treatment adherence, attendance and desired outcomes. The three domains of treatment adherence, attendance, and desired outcomes are the most influential factors in measuring a family ability to accept a full recommendation of treatment service. While evidence-based outcomes are concrete, comparing what measures are most important to the families will more largely reveal underlying social determinants within or beyond a family control, reflective of their ability to accept a recommended treatment service.
Results: The assessment and diagnosis of ASD is changing, and more recent studies recommend further consideration of social determinants including the functioning of family systems, impact of stress, and family perspectives on care needs are critical in determining what a successful intervention may look like. To better understand family perception of the three domains while also assessing social determinants, clinicians should discuss whether data collection is reflective of families desired outcomes. In these consultations, clinicians may prepare to lead larger conversations of what treatment outcomes are most meaningful, desirable, and preferred for the families and their children.
Implications: Upon receiving an ASD diagnosis, ABA services will likely be recommended to families. Commonly, families are not familiar with the time investment needed to participate in a full recommendation of services. When families do not accept a full recommendation of services, they are often left to wonder if the efforts they can realistically make will produce significant improvements for their child and family. To support families in making these difficult decisions, clinicians are encouraged to explore evidence-based outcomes compared to perceived outcomes with the family while embracing a service outcome that is meaningful, desirable, and preferred. Ultimately, supporting families in receiving a service that is most meaningful and desirable to their child and family should be a critical goal for ABA Clinicians