There are, perhaps, few children for whom goals are made and discussed as explicitly as they are for children with disabilities. We have touched on this concept in previous articles in relation to goals that promote empowerment, self-advocacy, and the double standards for compliance between disabled and non-disabled people. These goals also seem to lend themselves to overshadowing a child’s right to provide or withhold consent.
Parental consent is often considered to be a substitute for a child’s consent. Legally, it is a valid substitution in many cases. Ethically, however, parental consent sometimes overshadows a child’s explicit lack of consent. Parents and professionals both need to be extremely cautious about these situations and reevaluate the importance of the child’s consent.
Parents tend to play a considerable role in their children’s lives. They have great power and great responsibility. With prevalent fearmongering surrounding disabilities, any parent who has contact with society has probably received at least one nugget of bad, ableist advice. Often, this advice has come from people in positions of authority who are considered beacons of knowledge, such as doctors, therapists, and teachers. While these professionals often do hold significant amounts of knowledge within the broad scope of their fields, information about disability is often outdated and lacking in nuance. It is rare for the information to come from disabled people themselves in any form. It is even more rare for any information that comes from disabled people themselves to not then be subject to the less-than-accurate interpretation of a nondisabled professor or other professional who has not yet unpacked enough of their own learned ableism to be able to summarize concepts such as neurodiversity and disability rights with a suitable level of accuracy.
Take, for instance, the example of an undergraduate professor who showed a video in class depicting an autistic adolescent who was frustrated with his family for not returning objects to their designated area after use. The adolescent in the video mentioned that his family considers him to be the “not normal” one even though he is the only one who follows the rule of putting things back. Rather than grasping this point and implications regarding neurodiversity, the professor touched on it with commentary about how “everyone wants to feel normal.” And that’s what a room full of future disability service professionals heard.
Anecdotally, many doctors still offer ill-informed “prognoses” accompanying diagnoses of autism and other disabilities. Rather than expanding parents’ understanding of the complexities of development, communication, and well-being, many of these doctors spout the outdated statistics with the same ableist phrasing they learned in school. Instead of saying “your child may benefit from the following communication supports to express their needs,” many say things like, “your child may never learn how to speak.” To many parents who have lived separate lives from the disability community, this idea and others like it seem devastating. They then carry this idea with themselves as they participate in service planning for their child’s education.
It is a well-established fact that people are particularly susceptible to cognitive biases in times of high stress and exhaustion, which are somewhat universal in parenting young children. No wonder so many parents blame “functioning” rather than simply age and life experience when they perceive autistic adults as being “nothing like their child.”
None of this information aims to discount a parent’s right to advocate for their child’s education and future. Rather, we do parents a considerable disservice by limiting their access to information about disability rights and neurodiversity simply because they do not initially show an interest in it. They don’t know to be interested yet. Their cognitive biases are blocking them. Stigma is blocking them. Misinformation is blocking them. Professionals need to do better. Tasked with a large body of knowledge and a duty of beneficence, professionals must learn about the disability community, communication, and disability rights and pass that information along to parents. To follow through with a treatment approach or goal that is criticized by the disability community without giving parents access to nuanced information about these criticisms is unethical. Honoring only parental consent when an intervention is clearly upsetting to a child fails to take into account the child’s blatant lack of consent – it is unethical.
Professionals can use the dynamic of the professional-parent relationship to their advantage in providing beneficial services to children and their families. Parents can be educated about communication, support needs, accessibility, and more. They can be armed with terminology and resources to educate others in a child’s life. Most loving parents are not explicitly opposed to goals that involve their children growing up happy and self-assured. They know what that can look like in their own life. We owe it to them and to their children to show them how communication, consent, and self-determination can look for people with disabilities and how these things can be supported. Doing so is more difficult than relying on old methods and ideologies. And it’s essential. Without informed intention, how can we do no harm?