I’ve previously posted a description of how I see the neurodiversity paradigm, as well as a post contrasting the neurodiversity paradigm and the social model of disability.  (We often conflate the neurodiversity paradigm and the social model, but they’re really not the same thing.)

Basically, I see the neurodiversity paradigm as a way of shifting our focus.  Instead of looking solely at the neurodivergent person, we can use the neurodiversity paradigm to look at both the individual and society.  We don’t have to say that society is entirely at fault for everything and that only interventions to change society are acceptable (anxiety and self-injurious behaviours, for example, are things that we probably want to get rid of).  However, by defining disability as the product of an interaction between the individual and society, we can choose whether to intervene to change the person or society – basing our decision on what best protects individual well-being.  This gives us a great deal more flexibility in our interventions.

We can also shift our focus in another sense.  Instead of focusing solely on deficits, we can also search for and find a person’s strengths.  It is extremely difficult to use one’s areas of challenge and weakness to succeed in life!  Challenges may need to be addressed, yes, but a constant and unyielding focus on intervening to address areas of challenge is probably not the best foundation for, say, a career.  If we make ourselves aware of our strengths, if we expend effort cultivating them, we can take advantage of these strengths.  We could pursue a career that takes advantage of our strengths, and we could pursue this career without losing sight entirely of weaknesses that might hurt us along the way.  We thrive when we apply our strengths, not our weaknesses.

Furthermore, the shift of focus entailed by the neurodiversity paradigm helps to protect the self-esteem and mental health of neurodivergent people.  In the pathology paradigm, we explicitly define people’s differences as deficits and disorders, as things that are fundamentally and intrinsically bad.  Quite simply, we tell neurodivergent people that there is something wrong with them.  In contrast, the neurodiversity paradigm shifts our focus away from deficits alone and towards a perspective that embraces both challenges and strengths, and towards that idea that having a diversity of neurotypes is a good thing.  We treat diversity of neurotypes as something valuable.

Neurodivergent people are already vulnerable to mental health challenges, which can, I should emphasize, be understandable and natural responses to difficult life situations.  Repeated experiences of marginalization, exclusion, sensory distress, and more could easily have a negative effect on anyone’s mental health.  But telling neurodivergent people that there is something wrong with us only exacerbates this mental health burden, whereas accepting us who we are can help to alleviate it.

If you want more details about my views on neurodiversity, please have a look at my other posts on the subject.  But in pretty much all of my previous posts on the neurodiversity paradigm, I’ve been focusing heavily on intervention.  How do we intervene, on individuals or environments, to promote people’s well-being?  What sort of language can we use in our interventions to protect self-esteem?  That sort of thing.  I think it’s an important area to address, because much of the opposition to the ideals of the neurodiversity paradigm seems to be grounded on the false belief that the paradigm is opposed to interventions and supports.

However, if the neurodiversity paradigm is going to provide an adequate organizing ontological framework for everything related to neurological disability, we’re going to have to apply it to many issues beyond intervention.

One of the most controversial subjects in the field of neurodevelopmental diversity is genetic research.

To be clear, autism – while heavily genetic – is not necessarily going to be caused by some specific genetic variant that we can identify and potentially modify.  Most cases of autism are probably going to be attributable to an enormous number of different causes (some genetic and others not), and it is not yet clear that genetics research will have substantial direct effects on these autistic people’s lives.  However, other people’s autism is clearly being caused by specific genetic variants.

Many autistic and neurodivergent advocates fear that genetic research could be used to eradicate divergent neurotypes, and these advocates have therefore decided to oppose genetic research.  However, genetic research projects continue to proceed, and they have attracted considerable financial support.

How would we apply the neurodiversity paradigm to genetic research?

Well, it seems to me that there are a couple of very broad ways we could use genetic research, and because the consequences of these two broad categories of genetic research differ, they fall under different places in the neurodiversity paradigm.

Biological Mechanisms and Interventions

One way we can use genetic research would be to get a better understanding of the biological mechanisms underpinning divergent neurotypes, which we could then use to develop new interventions.  We might, for example, be able to use a pharmaceutical intervention to change a biological process that we discovered due to genetic research.  We might even, after addressing shortcomings of gene-editing technologies, be able to directly change the genetic material of an individual in minor ways that could help them function in the world without changing the essence of who they are.

Moreover, theoretically speaking, if we use knowledge gained from genetics research to improve our understanding of autism, we might get new ideas regarding how we can best modify society to include autistic people.

In all of these cases, we haven’t strayed too far from the applications of the neurodiversity paradigm that I’ve already discussed.  Before, we had to choose between intervening to change the person or to change the environment.  We had to make that choice based on what approach would most effectively protect the well-being of the individual.  (And remember, all else being equal, we might want to try changing the environment, because trying to change the individual sends that unfortunate message that there is something wrong with the individual.)

I suppose the main factor distinguishing these genetics cases from other, non-genetic examples is that we’re not talking about an off-the-shelf intervention, as it were.  We’re talking about spending money on research to explore whether we might be able to develop new ways of intervening.

Now, all this being said, I’m not writing this post to say that the neurodiversity paradigm necessarily demands that we hold a particular opinion regarding genetic research.  The neurodiversity paradigm is simply an ontological framework that allows us to identify the relevant factors we need to consider when we debate the merits of genetic research.  Individuals can draw their own conclusions about which of these factors are most important, and thereby come up with a final answer about the merits of this type of genetic research.  One person might say that the possible rewards of genetic research are sufficient to justify investing lots of resources in it: they might argue that we can’t ignore the possibility that we might get new interventions that promote well-being much more effectively than existing interventions.  Another person might argue that these potential rewards have been over-hyped, or that we’ve underestimated the negative consequences of investing in projects that are likely to aim to change people.  Thus, another person might want to divert resources away from genetic research and towards research on neglected topics like lifespan services.

But there’s still another broad purpose to which genetics research might be turned.

Selective Abortions and Gene Editing

The second major application of genetic research is the most controversial of the two.  Genetic research could be used to develop ways of prenatally screening for divergent neurotypes and selectively aborting neurodivergent fetuses, thereby eliminating neurodivergent people from the population.  We can already do this for some divergent neurotypes, notably Down syndrome.

Furthermore, as our technology advances, it might someday be possible to use gene-editing to eliminate some divergent neurotypes.  I already mentioned the potential of gene-editing technologies in the context of interventions to change the person.  If gene-editing was used later in development, they wouldn’t necessarily eliminate divergent neurotypes as such, because early genetic differences would still have shaped neural development in ways that would be difficult to reverse.  However, if gene-editing was used early enough in development, it could (theoretically speaking, at least) eliminate neurotypes based on specific genetic variants just as effectively as selective abortion.

The possibility that we might eliminate divergent neurotypes in this way is extremely frightening to many neurodivergent people.[1]  Not only do we fear that prenatal screening, selective abortion, and gene-editing might divert resources away from services that we need and depend upon, but we fear that the elimination of our people could destroy our neurodivergent communities.

Clearly, the ethical and moral question of whether it is ever appropriate to selectively abort an autistic or neurodivergent fetus, or to use gene-editing to transform a neurodivergent fetus or young child into a neurotypical one, is both crucial and pressing.  How does the neurodiversity paradigm deal with this issue?

(Note that I’m leaving aside specific, operational considerations about the safety of different prenatal tests and gene-editing procedures.  I’m also going to ignore the question of whether gene-editing could be applied to create a class system with limited social mobility, in which wealthier people would be able to pay to genetically “improve” themselves and their families.  These issues are important, but slightly peripheral to our focus here.)

First of all, in the case of selective abortion, I think we can put the interests of the fetus to the side.  Different people have very different ideas about the extent to which a fetus can have interests and moral worth.  Some of us might regard all human fetuses as sacred and therefore entitled to life, while others might argue that fetuses shouldn’t deserve any moral protections until the emergence of conscious brain activity.  However, this is not a post about the ethics of abortion in general, but a post specifically about the ethics of selective abortion of people with neurological disabilities.  As such, we are only interested in whether there are additional factors that only come into play when neurodiversity enters the picture.

Insofar as the fetus itself is concerned, I think the only such factor would be the possibility that the fetus will go on to have a life inherently characterized by suffering.  There may be some medical conditions that cause unbearable physical pain and suffering, but I certainly don’t think that neurodivergent people’s lives are inherently characterized by suffering.[2]  And the idea that neurodivergence is inherently associated with suffering is definitely incompatible with the neurodiversity paradigm.

Most of the experiences of suffering that come with neurodivergence tend to be related to other people’s reaction to unexpected and atypical behaviour.  If neurodivergent people were simply accepted for who we are, this major source of suffering would disappear.

Sensory sensitivities, I suppose, might seem like an inherent source of suffering at first glance.  However, unlike a physical pain that is internal and unrelated to the outside world, sensory sensitivities are a reaction to external stimuli.  In a properly-designed, accessible physical environment, sensory sensitivities would not be a concern.

I also don’t necessarily see any evidence that autistic people with intellectual disabilities inherently suffer any more than anyone else.  Our society values cognitive ability, but does an intellectual disability inherently cause a person to suffer?

If the fetus gives us no special reason to consider neurodivergent fetuses any differently than neurotypical fetuses, what other factors might there be?

Well, the interests of parents are definitely one such factor.  Raising neurodivergent kids can be difficult!  It can require a vast investment of time and money, over and above the parenting investment required by neurotypical children.  What if a parent is trying to pursue a career in a competitive field?  What if a parent is already working multiple jobs to make ends meet?  They might have to sacrifice their career aspirations and life dreams to raise a neurodivergent child – or they might not have the resources to raise one at all.[3]

Now, none of this is necessarily the fault of neurodivergent kids.  Remember how I said that disability in the neurodiversity paradigm is an interaction of the individual and the environment?  Well, we could easily say that governments have caused this caregiver burden by failing to provide adequate respite supports.  It might even be the case that some of the extra caregiving burden reflects the neurodivergent person’s difficulties in a neurotypical world – but the neurodivergent person might do very well in a different world.  Thus, we should resist the temptation to simply blame the child, and not our social contexts, for this caregiving burden.

All the same, given the society that we do have today, it’s hard to avoid the conclusion that some parents will have an individual interest in not having a neurodivergent child.  This would be a consideration in favour of giving mothers the option of prenatal testing and selective abortion, or the option of gene-editing technology.

However, there’s another special factor to consider in cases with neurodivergent fetuses.  Neurodivergent people, in general, undeniably have a collective interest in the continued existence and well-being of our communities, and that interest would be undermined if neurodivergent people stopped being born.  We have a collective interest in the maintenance of service systems that we depend upon, and that collective interest could be undermined if society chooses to instead adopt selective abortion or gene-editing as a “solution” to the “problem” of divergent neurotypes.

To recap, then: I interpret the neurodiversity paradigm to mean the neurodivergent fetus has no greater or lesser interest in its survival when compared to any other fetus.  However, the neurodiversity paradigm does allow us to recognize that parents who aren’t in a position to expend the time and resources needed to raise neurodivergent children might have an interest in selective abortions and gene-editing, whereas the interests of other neurodivergent people are opposed to selective abortions and gene-editing.

One key insight of the neurodiversity paradigm appears to be that the ideal solution to this problem might simply be providing parents with enough respite support that the caregiving burden associated with raising a neurodivergent child would be no greater than that associated with an average child, whereupon there would seem to be no justification for selective abortion of neurodivergent people or the use of gene-editing to eliminate divergent neurotypes.  However, this solution may not be realistic in the near future.

Thus, we once again come back to individual people and their own judgements.  Individuals can apply the neurodiversity paradigm to come up with the relevant factors that need to be considered in cases of neurodivergent fetuses (namely, the interests of the parents and the interests of neurodivergent people’s communities), but different individuals might weight these factors differently.  Some of us might value the continued survival of neurodivergent communities enough that we might be willing to place some kind of limitations or conditions on mothers’ ability to seek prenatal screening for divergent neurotypes, or researchers’ ability to pursue research in prenatal screening and gene editing, while others might be more uncomfortable with the idea of infringing on mothers’ freedom of choice.

One point I think we should all be able to agree upon is that weighting all these different factors against one another is difficult, and that we need to have serious discussions about the proper role for genetics research in the autism world.  These conversations must include all relevant stakeholders, and perhaps inclusion of community stakeholders in journal and granting review bodies could help to ensure that each genetics research project receives its appropriate dose of scrutiny and discussion.

Footnotes

[1] It is worth recognizing, though, that there are serious limits to the effectiveness of prenatal testing, especially in the case of autism.  You can see my post on biomarkers for a rant on how autism per se doesn’t really have biological markers.  Only those whose autism is traceable to specific genetic variants are going to be at direct risk.  Thus, it’s unlikely that prenatal testing, selective abortion, and gene editing could be used to destroy the autistic community as a whole, at least in the foreseeable future.  At most, we might be able to use our increasing knowledge to develop some kind of polygenetic estimate of the odds of a fetus developing autism, incorporating information about many genes, but this would necessarily be probabilistic.

[2] In the Netherlands, where medical euthanasia is permitted, “patient 2014-77” requested an assisted suicide from doctors.  This patient was indeed euthanized, not because of any physical illness, but because the patient’s autism was deemed to have caused unbearable and untreatable suffering.  This suffering, however, seems to have been chiefly related to the patient’s social isolation and experiences of neglect and abuse.  This was not unbearable and untreatable suffering caused by autism.  The suffering may have been unbearable, but based on my admittedly-limited understanding of the case from the publicly available information, it seems to have been entirely preventable suffering caused by the neurotypical world’s apparent failure to accept patient 2014-77.

[3] I suppose you could raise the solution of adoption/foster care, but while that might have value in individual cases, there are going to be serious problems if it becomes a commonplace solution.  During the era of institutional psychiatry, parents were expected and encouraged to send their kids with disabilities to be institutionalized.  Do we really want to start encouraging parents to put kids with disabilities into government care so that they don’t have to accept an unmanageable caregiving burden?  It seems like a solution that could easily take us down a slippery slope if applied widely.