Inclusion of autistic voices: Discussion and strategies to navigate the grey area of informed consent.
Andrew M. Colombo-Dougovito, PhD, CAPE
University of North Texas
Informed consent has been a foundational principle of human subjects research since the Nuremberg trials after World War II. Although well-established as an area of research, informed consent is still an ethical area of discussion, especially for vulnerable populations. Autistic children, especially, can present unique cases due to barriers of social communication and difficulty navigating societal norms. Often, autistic individuals—regardless of age or ability—are bypassed and a proxy, a family member, or caregiver is used to determine day to day activities that may or may not have a great impact on that individual’s life. While the proxy may have the best intention in any decision, the autistic individual has the right to the autonomy of making the decisions that impact her/him/their self.
When considering participation in research, parental or caregiver consent is necessary when including children that are under the age of 18 years, yet the participant’s assent is also required. Like the consent process, the assent process requires careful procedures that ensure clear indication of assent or dissent, based on either verbal or non-verbal behaviors. Both of these processes—consent and assent—are often highly regulated by university review boards; so much so, researchers and universities can take a “laissez faire” attitude to this process. Potentially leading to overlooking key details that may influence an individual’s experience with this process. When considering autistic individuals—especially those with alternative modes of communication—the standard procedure needs to be adjusted to meet individual needs. Furthermore, these procedures will likely need to have the flexibility to adjust on a case-by-case basis. This can lead to a grey area in this process.
This presentation will provide detailed considerations for researchers and designers when seeking consent/assent for children or adolescents with ASD, as well as strategies to ensure a positive, ongoing assent practice. Further, strategies discussed during this presentation will give attendees information needed to assess their own practice and ensure that they are being considerate when including neurodiverse individuals. While this presentation will focus on autism and provide strategies specific to this disability, the implications of this presentation can be applied to a variety of disabilities and vulnerable populations.