Neurodiversity – A National Core for Neuroethics Journal Club

Brain in Head B&W-RBrain in Head B&W-L

A new feature of this blog will be to summarize the discussion that arises at our weekly journal club.  Today, we read two papers on neurodiversity.

The first paper was Glannon, Neurodiversity. Journal of Ethics in Mental Health (2007).  Here is the abstract:

The neurological and psychological traits that regulate our thought and behavior fall along a spectrum that extends from the normal to the pathological, from traits that enable us to perform mental and physical functions to traits that interfere with these functions. Yet many people have a constellation of both normal and pathological mental traits. Some even have traits associated with exceptional intellectual or artistic ability despite being diagnosed as having a neurological or psychiatric disorder. These cases raise medical, ethical and legal questions about which conditions should be diagnosed as mental disorders or pathologies, and whether it is always in one’s best interests to be treated for these conditions.

The second paper was Fenton and Krahn,  Autism, Neurodiversity and Equality Beyond the’Normal’. Journal of Ethics in Mental Health (2007). Here is the abstract:

“Neurodiversity” is associated with the struggle for the civil rights of all those diagnosed with neurological or neu- rodevelopmental disorders. Two basic approaches in the struggle for what might be described as “neuro-equality” are taken up in the literature: (i) There is a challenge to current nosology that pathologizes all of the phenotypes associated with neurological or neurodevelopmental disorders (e.g. Autism Spectrum Disorder (ASD)); (ii) there is a challenge to those extant social institutions that either expressly or inadvertently model a social hierarchy where the interests or needs of individuals are ranked relative to what is regarded as properly functioning cognitive capacities. In this paper, we explore some of the reasons justifying (i) which make it an important tool for achieving greater neuro-equality, while still recognizing its limitations for achieving this goal. Particularly, we explore how an appeal to functionality and neurological diversity can support a re-seeing of at least certain forms of ASD.

These are actually but two of an interesting series of papers in a special theme issue of the journal on the topic of neurodiversity (with a contribution from the Core’s own Daniel Buchman).

One of the features of our journal club is that members share with the group other papers that bear on the issue.

Given that the concept of neurodiversity has emerged from the autism field, it seems appropriate to begin with a quote from Ian Hacking’s paper “Humans, Aliens & Autism.”

The Diagnostic and Statistical Manual of Mental Disorders (DSM) classifies autism as a mental disorder, a pervasive developmental disorder, in fact. But it is not a kind of madness, or a mental disorder like bipolar disorder. In the highly contested world of autism, some argue that it is not a disorder at all, only a difference from other people. Hence, like black pride or gay pride, there is something akin to autism pride, which at present may be settling into a “neurodiversity movement.”

Members of this loosely defined faction agree that autism is a neurological condition, but so, after all, is the state of what they call neurotypicals. Most people who will read this essay are, despite our oddities, neurotypicals. It is also true that many people who will read it can, like its author, notice autistic traits in themselves. For millennia we neuro- typicals have refused to acknowledge neurodiversity and so (it is said) do not understand even ourselves.

There was a healthy discussion about the role that neurodiversity plays in providing fodder for evolution; essentially, a variant of the hypothesis that what we term psychiatric disease may in fact have some underlying evolutionary advantage, if not for the individual then for the group (i.e. Nesse & Ellsworth, “Evolution, emotions, and emotional disorders“.

This naturally led to a discussion of Thomas Szasz’ classic work “The Myth of Mental Illness“, in which he argues,

The notion of mental illness thus serves mainly to obscure the everyday fact that life for most people is a continuous struggle, not for biological survival, but for a “place in the sun,” “peace of mind,” or some other human value. For man aware of himself and of the world about him, once the needs for preserving the body (and perhaps the race) are more or less satisfied, the problem arises as to what he should do with himself. Sustained adherence to the myth of mental illness allows people to avoid facing this problem, believing that mental health, conceived as the absence of mental illness, automatically insures the making of right and safe choices in one’s conduct of life. But the facts are all the other way. It is the making of good choices in life that others regard, retrospectively, as good mental health!

The real-world implications of neurodiversity and the pathologicalization of normalcy was brought up when we again revisited the ongoing challenges that face us with the development of DSM-V, and its potential embrace of subthreshold and premorbid disorders as bona fide entities.  This topic has been previously discussed on this blog, with the overall DSM-V controversy being covered extensively over at Mind Hacks (here, here, here and here) and most recently in an update on the Stanford Center for Law and the Biosciences Blog.  The fear that an ever increasing number of individuals might fall under future DSM criteria led one wag to remark (with tongue firmly planted in cheek, I might add) that if we ultimately continue down this path, eventually 98% of the populace will fall under the DSM umbrella and then the remaining 2% will be included because they have Boringly Unproblematic Syndrome.

A completely different perspective came from discussion of Rose & Novas’ paper ‘Biological Citizenship‘.  We conclude with an extended quote of a pithy part of their argument.

Biological citizenship is both individualizing and collectivizing. It is individualized, to the extent that individuals shape their relations with themselves in terms of a knowledge of their somatic individuality. Biological images, explanations, values and judgements thus get entangled with a more general contemporary ‘regime of the self’ as a prudent yet enterprising individual, actively shaping his or her life course through acts of choice (Novas and Rose 2000). The responsibility for the self now implicates both ‘corporeal’ and ‘genetic’ responsibility: one has long been responsible for the health and illness of the body, but now one must also know and manage the implications of one’s own genome. The responsibility for the self to manage its present in the light of a knowledge of its own future can be termed ‘genetic prudence’ (c.f. O’Malley 1996). Such a prudential norm introduces new distinctions between good and bad subjects of ethical choice and biological susceptibility. This contemporary biological citizenship operates within what we term a ‘political economy of hope.’ Biology is no longer blind destiny, or even foreseen but implacable fate. It is knowable, mutable, improvable, eminently manipulable. Of course, the other side of hope is undoubtedly anxiety, fear, even dread at what one’s biological future, or that of those one cares for, might hold. But whilst this may engender despair or fortitude, it frequently also generates a moral economy of hope, in which ignorance, resignation and hopelessness in the face of the future is deprecated. This is simultaneously an economy in the more traditional sense, for the hope for the innovation that will treat or cure stimulates the circuits of investment and the creation of biovalue.

Biological citizenship also has a collectivising moment. As Paul Rabinow has shown, new forms of ‘biosociality’ and new ethical technologies are being assembled around the proliferating categories of corporeal vulnerability, somatic suffering, and genetic risk and susceptibility (Rabinow 1996). Biosocial groupings – collectivities formed around a biological conception of a shared identity – have a long history, and medical activism by those who refuse the status of mere ‘patients’ long predates recent developments in biomedicine and genomics. Many of these earlier activist groupings were fiercely opposed to the powers and claims of medical expertise. Some remain implacably anti-medical; others operate in a manner which, whilst not explicitly ‘opposed’ to established medical knowledge, prefers to remain ‘complementary’ to it. Nonetheless, we suggest, collectivities organized around specific biomedical classifications are increasingly significant. The forms of citizenship entailed here often involve quite specialised scientific and medical knowledge of ones condition: we might term this ‘informational bio-citizenship.’ They involve the usual forms of activism such as campaigning for better treatment, ending stigma, gaining access to services and the like: we might term this ‘rights bio-citizenship.’ But they also involve new ways of making citizenship by incorporation into communities linked electronically by email lists and websites: we might term this ‘digital bio-citizenship.’

Thus, as Heath, Rapp and Taussig (2002) have pointed out, citizenship in the contemporary age of biomedicine is manifested in a range of struggles over individual identities, forms of collectivisation, demands for recognition, access to knowledge and claims to expertise. It is creating new spaces of public dispute about the minutiae of bodily experiences and their ethical implications – a politics of embodied or somatic individuals. It is generating new objects of contestation, not least those concerning the respective powers and responsibilities of public bodies, private corporations, health providers and insurers and individuals themselves. It is creating novel forums for political debate, new questions for democracy and new styles of activism. In each case, the forms that these are taking are shaped by many factors that vary in different national contexts, notably their differing biopolitical histories and modes of government, their traditions of activism and their presuppositions about persons and their rights and obligations.

We welcome comments from readers

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8 thoughts on “Neurodiversity – A National Core for Neuroethics Journal Club

  1. Neurological function can be thought of as a gaussian distribution (or better yet, a series of gaussian distributions, one for each mental trait). Neurotypicallity is just being fairly close to the average over all your neurological traits. If any one trait deviates far enough from this average, you’re either a savant, or you have a disorder. Not that real, severe psychological problems don’t exist, but if 90% of the population had an autism spectrum disorder, “Extreme Gregariousness” would be the condition that had to be treated.

  2. My initial reaction to the whole notion of neurodiversity was chilly, but the more I read, the more I thaw. I will, however, cop to two worries that aren’t so easily dislodged:

    a) To analogize imperfectly, imagine someone living in a foreign country who adamantly refuses to attempt learning even a shred of the country’s language, and (perhaps in a rude manner) insists on being communicated with in English. We might reasonably value linguistic egalitarianism and wish for monolinguals to have equal rights, and yet also take issue with this monoglot’s behavior, owing to his lack of reciprocity in overcoming the practical challenges of being linguistically atypical, as well as his sense of entitlement. If we move too quickly or without circumspection in coming to recognize neurodiversity, we risk further legitimizing an analogous phenomenon amongst, for instance, HFAs. Anecdotal evidence is anecdotal, but I know certain HFAs who are a nightmare to be around because of this zero-compunction type of attitude – “I automatically exempt myself entirely from all norms of neurotypical social behavior, and take offense to the notion that any of the effort needed to secure my equal rights should come from me.”

    b) I’m not an “autonomy fundamentalist,” but it does strike me as worrisome that the neurodiverse may seek active interventions to create similar neurodiversity in their offspring. This mirrors concerns about, for instance, deaf parents seeking surgical intervention to deafen their newborn hearing child. People may not choose to be neurodiverse, but just as we neurotypicals (arguably) oughtn’t impose our standards of healthy/disordered on the neurodiverse, so it should be recognized as a two-way street.

    • Roland Nadler must realise that those on the autistic spectrum (and I have first-hand experience as an ASD) have no choice in the way we think. The question is not about refusing to learn the language or of imposing a different set of standards. It is about obtaining tolerance in a highly competitive culture to allow a minimal quality of life.

  3. I don’t know If I said it already but …I’m so glad I found this site…Keep up the good work I read a lot of blogs on a daily basis and for the most part, people lack substance but, I just wanted to make a quick comment to say GREAT blog. Thanks, 🙂

    A definite great read..Jim Bean

  4. It’s a bit puzzing why some neurodiversity advocates attack kgaccount on you tube when the mum is clearly not in the same camp as vaccines caused my son’s autism group. I’ve seen her videos.

  5. I was forced to live with one of your “neurodiverse” individuals for about a decade. You are dreaming. This is enormous crap. I have watched such a person go from sweet to paranoid attacker in less than a second. I have been attacked numerous times and I will NOT sit around pretending that that’s all right by me. NEVER AGAIN. I would never live through that hell again. You need to climb down off your cloud and live in the world of the rest of us.

  6. MadSat, You should realise that your less than subtle aggressiveness would create anxiety and defensiveness in someone less able than yourself to understand the context of your impatience.

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