Informed consent is based on the legal and moral premise of patient autonomy. It typically involves an expert or team of experts educating the patient about their diagnosis, treatment recommendations, and all associated risk factors related to the recommended treatment. The intent of informed consent is for the patient to make the final decision of the treatment.
The challenge with informed consent as it relates to the diagnosis and treatment recommendations for asd is the misrepresented idea that ABA is the gold standard of treatment and that other approaches are to be integrated into the aba program. The true gold standard is that children diagnosed with asd have better outcomes when they receive intensive, family centered treatment supported by a team of developmental specialists. The term ABA is now so widely and generically used that it has lost specific meaning. When over generalized terms are used, the process of individualizing to the clients needs is greatly minimized and the process of informed consent is compromised.
Given that ASD is a social communication disorder, often accompanied by speech and language delays, it is imperative that a slp be a team leader involved with the process of providing informed consent to families and clients affected by ASD. An intensive treatment program guided only by professionals and therapist trained in behavioral methodologies puts families and clients at risk for aquired social communication challenges and delayed or atypical acquisition of later developing capacities related to social cognition and executive function.
ASD affects relationships. Developing and implementing evidence based treatment programs build from relationship, starting with informed consent across therapeutic disciplines to comprehensively support families. The model of one expert leading the team has failed our families. Given that we know ASD is best supported by a team of specialists, informed consent begins with helping a family understand what ASD is, how we learn and develop, how we can help build upon their child’s strengths through relationship and a developmental framework, and how we can best empower families to participate.