Representing the Autism Spectrum

In a recent article, published in The American Journal of Bioethics by Robert Chapman and myself*, we argue that accurate representation of the entire autism spectrum requires putting the voices of non-verbal autistics center-stage. The article is titled ‘ Representing the Autism Spectrum,’ (hence the title of this post), and attempts to remedy the binary framing common within the autism cure-versus-acceptance literature.

Intended as a response to an article by McCoy et al. we criticize their set-up of autism as binary framing between what we call “self-representing autistics” and “nonrepresenting autistics” (p. 46). The former we consider to be “verbal self-advocates without further intersecting cognitive disabilities, who see autism as a natural manifestation of human neurodiversity, rather than as a disorder to be cured,” while the latter “nonverbal autistics with further cognitive disabilities, who have high support needs and who have so far been unable to independently communicate” (p. 46).

To many, these labels are familiar from the high-functioning vs. low-functioning and mild vs. severe distinction commonly drawn in the literature. We, alongside other neurodiversity advocates, prefer to avoid these labels as they can be considered offensive and misleading by those these labels are intended to represent.

The problem with the binary framing is:

… that they thereby overlook how most individuals on the autism spectrum sit somewhere in between the two extremes they focus on. This is important here because there are many examples of individuals who are much closer to nonrepresenting autistics than to self-representing autistics, who (despite still being deemed “lowfunctioning” in medical-deficit terms) nonetheless can represent themselves ( Chapman & Veit 2020, p. 47).

This flaw is common in the literature and public debate. It is problematic precisely because it side-lines the very voices that should be center-stage. Most individuals sit between the two extremes. Focusing, therefore, on the extreme points is likely to misrepresent the entire autism spectrum. Secondly, it is important to note that many of the autistics who are unable to talk, but have learned other ways of communication, do not necessarily agree with the language of ‘curing’ their disorder. It is, therefore, dangerous to silence their voices if one aims to accurately represent the wishes and desires of the autism community. Here, the neurodiversity movement has played an important role: by shifting the language from that of curing.

Importantly, we do not mean to say that the neurodiversity movement should only be considered a movement to right past injustices. By ignoring or misrepresenting the autism spectrum, epistemic injustice can also undermine the very science on autism itself. Recent work in the philosophy of science on “model pluralism” ( Veit 2019) suggests that alternative ways of framing debates and a diversity of models should be considered necessary steps toward a better representation of reality, and hence progress in science. ( Chapman & Veit 2020, p. 47)

The neurodiversity movement can thus be seen not only as a moral movement, but also a scientific one-one that seeks to accurately represent the entire autism spectrum. As Veit (2019) argues, a multiplicity of diverse models and perspectives is a necessary component for progress in science. Diversity is not only a moral good, but it is also a scientific one.

We do recognize that “our analysis may raise more questions than it answers. In the meantime, we urge that future contributions follow us in putting the voices of nonverbal self-representatives at center stage” (p. 48).

Follow me on my website and Psychology Today blog; I write extensively on the neurodiversity movement. I am currently a Vice Chancellor’s Fellow at the University of Bristol.

*Both of the authors are on the autism spectrum.

Originally published at https://www.psychologytoday.com.