October 13, 2009

Neurodiversity vs. Cognitive Liberty

Casey Rae-Hunter is guest blogging this month.

Part of the great debate that has come to characterize current assignments within the autism spectrum has centered on the concept of neurodiverity, which is, to my understanding, an umbrella term that connotes a desire to respect the neurological integrity of individuals. However, it has come to mean more to some with Asperger's Syndrome — particularly those adult "aspies" whose self-definition and place in the world may be hard won, to say the least.

It is somewhat difficult to have a cogent argument about neurodiversity at this stage in history, due to the relative newness of the Asperger's diagnosis. The sociological impact of having an entire generation of adults coming to grips with the existence of an autistic spectrum (and their place within it) can not be overstated. These are early days for aspie advocacy, so it's to be expected that some within this community, having suffered a broad array of indignities, would want to assert themselves through what they see as favorable self-categorization. To others, however, it may be interpreted as elitism.

Many adults with Asperger's (such as myself) did not have the benefit of social or scholastic acceptance of their differences. My own burdens were lightened considerably by my eventual AS diagnosis, but I'm sure for some this is not the case. Keep in mind that Asperger's is an autistic spectrum disorder — if you've met one aspie. . . you've met one aspie. I've heard some real horror stories of tragic childhoods, miserable school experiences and failed relationships, so I understand why some folks with AS may feel a certain degree of embitterment towards the neurotypical world. And it's definitely easy to retreat into a fantasy where you're the "superior" and everyone else just doesn't "get it."

Perhaps an analogy can be drawn to the feminist movement of the early 1960s. Having endured years of societal repression — if not outright abuse — at the hands of a patriarchal status quo, was it any wonder that some self-identifying feminists pushed the envelope of diplomatic conversation with larger society? My opinion is that some in the AS community are having their "I am Aspie, hear me roar" moment.

Well intentioned as such advocacy may be, it seems unfair to champion "neurodiversity" when there are people with, ahem, "lower functioning" autism who struggle greatly with their neurological lot. Families of autistic individuals may actually prefer a "cure" to this condition, as it's preferable to a lifetime of social stigma, behavioral outbursts and isolation. From that perspective, "fixing autism" looks pretty compassionate.

For those on the Asperger's side of the spectrum, the idea that aspies should be "cured" — likely through medical, societal or familial coercion — is as offensive as it gets. As we piece together the historic record of autism, it's clear that a shocking number of the most influential minds of the last several centuries may indeed have had Asperger's Syndrome: Nikola Tesla, Albert Einsten, Andy Warhol, Mozart. . . the speculative list goes on and on. If you'd suffered a lifetime of mistreatment by peers and ostracizing in romance or the workplace, wouldn't you want to self-identify with such titans of mentation? And who's to say that the increase in diagnosed Asperger's isn't just due to better clinical testing? Perhaps it's an evolutionary advantage — wouldn't our digital era favor adaptive traits that reward certain kinds of functioning? Ever wonder why there's so many aspie kids in Silicon Valley? Born to code, indeed.

On the other hand, this could all be a scientific canard.

It's probably better and more helpful to examine the meaning of cognitive liberty — which is to say, the right to psychological self-determination, based on robust informational resources and stratified by some level of societal tolerance. Before you say, "hey, that sounds like neurodiversity," consider my handy Principles of Cognitive Liberty:

1. Cognitive liberty is the basic right of an individual to pursue beneficial psychological trajectories. If the individual is unable to make these choices themselves, than it is the right of their closest family members to make them, provided they are not coerced by the medical establishment or prevailing social strata.

2. Cognitive liberty recognizes that information and education are key to making informed choices. In the absence of such information, cognitive libertarians will advocate for the fullest range of data in when considering treatment options or lifestyle planning.

3. Cognitive liberty recognizes the range of psychological profiles in both the neurotypical world and otherwise. Until and unless an individual's psychology can be determined as infringing on another individual's cognitive liberty, they are free to pursue or not pursue strategies for conventional adaptation or any other panacea — actual or postulatory.

What do you think about neurodiversity vs. cognitive liberty? How practical is either?

Casey Rae-Hunter is a writer, editor, musician, producer and self-proclaimed "lover of fine food and drink." He is the Communications Director of the Future of Music Coalition — a Washington, DC think tank that identifies, examines, interprets and translates issues at the intersection of music, law, technology and policy. He is also the founder and CEO of the Contrarian Media Group, which publishes The Contrarian and Autistic in the District — the latter a blog about Asperger's Syndrome.

8 comments:

Dustin said...

Perhaps you need to describe the difference between neurodiversity and cognitive liberty more. From what you've said in this post I cannot see any difference.

Well, I take that back, I can see one potential difference. As far as I can tell the only difference between the two is that neurodiversity is based upon neurological "disorders", whereas your cognitive liberty could also include psychological disorders.

Casey said...

As I se it, neurodiversity has been (or at least can be) used to justify a purely hands-off kind of advocacy, particularly in the Aspergian set.

Cognitive liberty does and should include psychological disorders, but mostly it is the idea that one's choice in treatment or choice of non-treatment is one's own. The problem with it is that it's more of an ideal than a pragmatic set of principles, because it presupposes the availability of credible and diverse data with which to make informed choices, and also that the individual in question is in a position to have agency with which to act on the information. Neither is always the case.

Thanks for the comment.

ZarPaulus said...

It seems to me that neurodiversity is saying that people with neurological disorders (specifically ASDs) should not be treated. Whereas cognitive liberty is saying that people should be able to decide their neurological state themselves.

Casey said...

Congrats to ZarPaulus for saying it way more clearly and with far fewer words! ;-)

Casey said...

[Comment by Stephanie. transferred by permission]:

http://embracingchaos.stephanieallencrist.com/

I don’t have a blogger account or an open ID, so I cannot comment on the other blog, but I did want to respond to your post.

The brain’s plasticity is certainly a ripe area for research and I would definitely agree with Ramachandran’s belief that neuroscience is still too young of a discipline for any definitive, unified theory — and I would go so far as to add that I expect psychology will eventually be absorbed by a combination of neuroscience, philosophy/religion, and sociology/anthropology to the point that it ceases to exist as a discipline.

However, I would also assert that “psychological self-determination” is the key factor. Whenever science gets to the point where it can re-write people’s brains in a manner of the scientists’ choosing, it will in all likelihood be used without consent. I would hope that our ethics outpaces our abilities, but that’s rarely the case as a species.

Daniel Durrant said...

These are great ideas. I'm glad to see some novel advocacy concepts brewing. In my opinion, the Asperger's Spectrum is moving in the right direction.

Both Neurodiversity and Cognitive Liberty work in tandem.

The first principle of Cognitive liberty could certainly use some trustworthy renegade scientists in the medical establishment need to team up with some of us early adopters. Hopefully they're listening.

The second principle's emphasis on education and life style planning is sounds interesting. In the early stages, the beta testers will just have to agree to be augmented in light of all the potential risks. All of this should be transparent. No secret augmentations with mad scientists welcome.

The risk takers who are willing to be subjected to the potential harms of early augmentation will end up being the spokespersons for the benefits. Individuals who fell outside the neurotypical spectrum should design a snazzy discourse. Language-games are really not that difficult to manufacture.

The third principle emphasizes the duty to prevent harm to others who are 'neurotypical' and to ensure their liberty to descend, as opposed to ascend. For all we know, both might be equally dangerous. For every step forward there will be steps backward. There are risks involved in any power exchange.

Wrye Sententia said...

Thank you for the measured and thoughtful consideration of both concepts: cognitive liberty and neurological diversity.

Rather than an antagonist position (one vs. the other), I would assert that neurodiversity is made possible by cognitive liberty. I agree, that from a practical standpoint, it's difficult to allow agency and decision-making to individuals under all circumstances, yet this should be the "fallback" position of the law. Many of our constitutional legal protections are protected by just such ideals.

I would like to direct your readers to a case that the Center for Cognitive Liberty & Ethics took before the US Supreme Court (http://www.cognitiveliberty.org/dll/sell_index.htm). Unfortunately, the Supreme Court Justices ruled "narrowly" in favor of Dr. Sell, but nonetheless left the larger issue of self-determination and neurological freedom, undecided.

nhokkanen said...

As a parent, my desire to "cure" autism has nothing to do with altering a child's personality, intellect, mannerisms, identity. For me, "cure" means remove pain and discomfort, improve physical function, and/or liberate from crippling depression or schizoaffective disorders. The desire springs from the child's lab tests, not from my personal expectations. I've told my son that all I expect him to do is breathe. However many ASD children have asthma and allergies, which make even breathing a challenge. My son suffered adverse reactions to vaccines. It's unfortunate that so little research is done into preventing vaccine AE's.