Pro-cure autistics and the neurodiversity paradigm
Posted Jun 26, 2020
A recent article published in the journal Bioethics poses a question for myself and other neurodiversity proponents: how do we account for autistic people who believe they are mentally disordered and want a treatment or cure for their autism to be developed?
As an ethical issue, we can understand the challenge as follows. If neurodiversity proponents were successful in establishing a shift to the neurodiversity paradigm, and disabilities such as autism were therefore depathologised, then this shift might be felt as harmful or oppressive for those autistics who see autism as a genuine medical pathology in need of a cure. Given this, then arguably, it is our responsibility to develop the conceptual and practical space for pro-cure autistics to not have their identities and agency invalidated by the neurodiversity paradigm.
It is worth mentioning that research suggests most autistics identify as autistic rather than seeing it as a pathological addition to their selfhood. Moreover, the oft-repeated claim that autistic people with high support needs all want to be cured is not supported by any evidence. In fact, a range of people from across from spectrum reject the search for a cure.
Still, it is clear that there are some autistic people who don’t feel that their autism is part of their identity, and who do support the search for a cure. And its also true that if the neurodiversity paradigm was implemented, this may seem like it could invalidate their identification and preferences. So this is something neurodiversity proponents need to take into account as we work towards the paradigm shift.
Of course, the issue certainly hasn’t been ignored. Many analyse pro-cure autistics through the lens of internalised stigma or internalised ableism. This is similar to how we might understand a gay person who actively seeks out pseudoscientific gay conversion therapy as doing so because of internalised homophobia.
I suspect there is a grain of truth in this, at least in some cases. After all, if we understand ableism as structural and systemic, then we will all likely have internalised ableism, and this will play some role in our judgments and preferences. Moreover, there is a huge, overwhelming pressure on autistics to try and appear “normal” by masking. This has been found to harm not just autistic people but also their families or carers. So it would be very surprising if this context didn’t contribute in some way to autistics wanting a cure to be developed.
Still, I think this framing runs into problems. One issue is that it's perfectly coherent that someone could want to change neurotypes for reasons unrelated to ableism. If we imagine a future where this is technologically possible for a moment, there are all sorts of reasons one might want to do this. They may just be interested in experiencing the world from a different perspective, for instance. Importantly, they need not be a neurodivergent person wanting to be neurotypical either: they could be a neurotypical who wanted to be neurodivergent.
A second issue is that this framing could (although I am sure most proponents would not want this) reinforce concepts like the “self-hating autistic"—a term I have occasionally seen some people use to dismiss those who seek a cure. Needless to say, the notion of “self-hating autistics” is highly offensive, and arguably contributes to ableism itself, given that it functions to undermine the agency and concerns of some autistic individuals. Moreover, even if we can avoid terms like "self-hating autistics," reducing the issue to internalised stigma still may be felt to trivialise the distress and undermine the agency of pro-cure autistics regardless.
In my view, even if someone's preference was somehow shown to be influenced by internalised stigma, this still doesn't invalidate the preference itself. Hence, while I personally strongly believe that autism is not a mental disorder, I also believe that it is important to not use the concept of internalised stigma in a way that could minimise the concerns of pro-cure autistics.
My modest proposal is to introduce to the concept of—for lack of a better term—“neurotype dysphoria.” What this would refer to is when an individual feels discontent with their neurotype, which in some cases can be to the extent that they would change their neurotype if they could. I suspect that most people experience neurotype dysphoria at some point in their lives, but only a few experience it to the extent that they are continually sure they would change it if they could.
This framing has multiple benefits. First, it allows us to acknowledge and recognise that some people suffer due to a clash with their neurotype. This doesn’t assume that their neurotype itself is pathological, but it does nonetheless acknowledge that one’s neurotype may come with limitations that clash with one’s aspirations and identity, and moreover that this clash itself can be experienced as harmful.
Second, the concept of neurotype dysphoria is compatible with the internalised stigma analysis but is equally compatible with the issue not being one of internalised stigma at all. Given this, it allows us to acknowledge each different case through sensitivity to the individual and their context, and thus provides more space for the agency of pro-cure autistics.
Third, it allows us to acknowledge that neurotype dysphoria can go both ways, between neurodivergent and neurotypicals. I think this is important because the discourse tends to assume it will only be neurodivergent people who feel like this, but I suspect many neurotypicals do, too. After all, it is not unheard of for people to wish they were "less normal." Normality can be oppressive even for those whose neuro-cognitive functioning fall within statistical or social norms.
One further important difference is that this framing allows us to grant all of the above without the issue being framed as a matter of “curing,” since it does not assume that what we are talking about are disorders. Rather, it is one of changing aspects of one’s cognition to align with how one wants to be.
Of course, there may be other totally different ethical issues that arise from the possibility of, say, altering an individual's cognition—many people are against this for all sorts of reasons—but here the issue wouldn’t be framed as one of curing a disorder. So while there may be other good reasons to think that developing technology to alter neurological functioning might be ethically worrying, those worries can be discussed independently of whether we consider it a matter of "treatment" or not.
It is important to note that one implication of this shift would be that it would likely reduce the resources put into trying to understand the biology of autism, hence making it less likely that "treatments" would be developed. So the pro-cure autistic might still have a disagreement here. Still, even if there is a disagreement, this does not undermine their agency in any way. The matter of how we direct limited resources is a complex one that has to take many factors into account, and cannot be based solely on what a small proportion of the autistic population think. The core issue here is that if most autistics don’t want to be cured, then it's hard to see why most research funding should be used on trying to understand the biology of autism as is currently the case. And this argument holds whether we agree or disagree with the neurodiversity paradigm as such.
It is important to emphasise that the neurodiversity movement is a social justice and conservationist movement, and a big part of that is to resist eugenics (as I have written about here). The main task is to challenge the notion that neurodivergent disabilities are necessarily tragic or pathological, and moreover to make the world more accessible for us. In line with this, it should also be stressed that recognising neurotype dysphoria legitimises cognitive change only in the case of people (arguably adults) who chose it for themselves, based on their experience of neurotype dysphoria. It doesn't in any way legitimise things like prenatal eugenic measures or imposing invasive "treatment" on to children.
In the long run, I hope that as the world becomes more accessible and less stigmatising for neurodivergent people, then fewer people will experience neurotype dysphoria, and the issue will be less pressing. However, it is also the case that the vocabularies we construct don’t need to undermine the agency or struggles of people who wish their brains functioned differently than how they currently do.