Neurodiversity in Adolescence

Authors: Fang-Hua Hu, Omeed Yazdani

Editors: Armando Delgado

With growing awareness and changes to diagnostic criteria that are used to interpret and categorize behavior, there has been an increasing number of children being diagnosed as neurodivergent. When a child is diagnosed, it can lead to various responses from parents with some experiencing disappointment and grief. Parents fantasize over what their child will be like, and when the child relates and communicates in a different way than them, the parents end up with “shattered expectations” (Sinclair 2012). The dominant narratives in media and by medical professionals that promote neurodivergence as something needing to be fixed can be internalized by parents such that they’ll experience grief whenever the child doesn’t meet neurotypical milestones in development. Childhood is a period where people can’t legally advocate for themselves, and so parental attitudes become important.

Diagnosis

Parents will be told to monitor their child’s development and see if they’re reaching typical developmental milestones. Behaviors regarding how social they are and when they start speaking are often talked about in terms of ‘red flags’ or ‘warning signs’ to look out for. General concerns on their child appearing ‘different’ may lead to parents worrying about issues in their parenting or issues with their child. They may be recommended to employ educational and medical technologies that they think will be good for their child. Here’s an excerpt from a parent:

“I will never stop being ashamed of how, under the guidance of a medical doctor who convinced me and my husband that he could “treat” autism, I subjected my autistic preschooler to a full autism quackery barrage: innumerable supplements and dietary restrictions, pseudoscience “electrical field” treatments, vitamin B12 injections, and even preparation for chelation” (Greenburg 2020)

Parents in general struggle in understanding their child due to their young age, and some turn to the advice of medical professionals they trust. Treatment is desirable for the parents at the time, but putting a child through all of these different treatments could have potential harms in the future regarding mental health and how they view themselves. It’s dehumanizing to try and change your child into something they are not.

Another issue often brought up by parents and activists for neurodiversity is that neurodivergent behaviors can appear in a variety of ways. There is a widespread belief that having a disability is only okay if you're able to fit into a neurotypical world or if it offers a special talent or skill with social value. This leads to some parents with children of substantial intellectual, language and behavioral challenges believing that intervention is necessary, and other people can’t speak for their child because not all neurodivergent people have the same experiences. The parent is still speaking for the child, but their role as guardian may make them feel like they have more of a voice than other autistic adults (Leadbitter et al 2021). There’s a question for the parents about what is actually bad for their child and if it really is due to their neurodivergence.

Early Intervention

One of the hallmarks of the neurodiversity movement is the view that neurodiversity is not a defect or liability to humankind, but rather a disability that “arises from the interaction between a non-standard individual and an unaccommodating environment” (Leadbitter et al 2021). This definition of neurodiversity has sparked recent debates centered around the practice of early autism intervention, specifically about if it is really helpful for the cognitive development of neurodivergent people, or if it is just a mode of further pushing normative standards of success upon them, thus “changing their essence” (Leadbitter et al 2021).

In order to discuss early interventive treatment, it is important to view the parents perspective on why they are subjecting their child to it. In wanting the best for their child, parents often unfortunately push normative standards of success upon their children. This can be anything from expecting very good academic performance to even forcing verbal communication with others from a young age. These modes of learning don’t necessarily work for neurodiverse people, because these systems in question are fundamentally designed for the heteronormative student. Thus, parents often get the idea that their child is falling behind, which then instills a fear for their child’s future, prompting them to seek help. As for the process of early intervention itself, many programs cross the line of being accommodating to the child’s needs for cognitive development and start to become harmful to the child by attempting to alleviate ‘autistic behaviors’. This is evident because the success of early intervention is often measured in how many of these ‘autistic behaviors’ have been mitigated.

Early intervention is such a difficult topic to discuss because of how the line between help and harm is often subjective and challenged by differing opinions on what exactly counts as a ‘helpful’ or ‘detrimental’ behavior. In the words of Julia Bascoim, who is a journalist speaking on this topic, “have his attempts at self-determination and self-advocacy be[en] respected and responded to, regardless of form, or has he been taught that passivity is better?” Interestingly enough, it is the adults in power, such as physicians, psychologists, and parents, that are making the decisions for the children that are actually going through these programs. Speaking on their experience as a neurodiverse teen in the Washington state school system. Michael Sheeran states that “Back when we were still discovering my differences, I was too young to have much of a voice for myself.” The adults talking over the experiences of children have extremely negative impacts on their mental health and also leaves the child without coping mechanisms and a place where they feel as if their concerns are taken into consideration. Thus, although these children currently lack it, they need the autonomy required to say no to any interventive techniques used upon them. This starts with actually taking the time to listen closely to the experiences of these children because it is currently difficult to discern the views of the individual child. This is attributed to their young age, which implies communication barriers and sometimes just a general lack of understanding.

References:

Greenburg, C., Rosa, S.D.R. (2020). Two Winding Parent Paths to Neurodiversity Advocacy. In: Kapp, S. (eds) Autistic Community and the Neurodiversity Movement. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-13-8437-0_12

Leadbitter, K., Buckle, K. L., Ellis, C., & Dekker, M. (2021). Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice. Frontiers in psychology, 12, 635690. https://doi.org/10.3389/fpsyg.2021.635690

Sinclair, J. (2012). Don't Mourn for Us.. Autonomy, The Critical Journal Of Interdisciplinary Autism Studies, 1(1).