The Neurodiversity Paradigm

In Part I of this post, we discussed how the pathology paradigm (Walker, 2013) is failing under the weight of the anomalies that beset it.  We concluded that it was time to find a new paradigm.  The emerging rival to the pathology paradigm is the neurodiversity paradigm.

Judy Singer (1998/2016), who is generally accepted to have coined the term “neurodiversity,” asked:

“Why not appropriate metaphors based on biodiversity, for instance, to advance the causes of people with disabilities?  Why not propose that just as biodiversity is essential for system stability, so neurodiversity may be essential for cultural stability?  Why not strategically argue that the nurturing of neurodiversity gives society a repository of types who may come into their own under unforseeable circumstances…”

Thus, the term “neurodiversity” itself refers to the diversity of human brains and minds, while the paradigm of neurodiversity starts with the assumption that there is value in this human neurodiversity.  Deviation from what is “normal” or “normative” is not bad, but good.  For further details on this terminology, I would refer to Nick Walker’s blog post on the subject.

Many people in the autism field still resist the neurodiversity paradigm.  Why?  Well, there are several reasons.  Partly, it’s simply because of tradition and custom.  Believe it or not, academics can be absurdly conservative at times, at least in the more scientific fields.  We have dogmatic stylistic guidelines, inflexible peer-review processes, and rigid customs and conventions.  In scientific fields, something as simple as a minor change of terminology, let alone a change of paradigm, can be a big deal!

However, there’s also a lack of clarity about what, exactly, the neurodiversity paradigm is.  It’s a new way of looking at the world, and it means different things to different people.[1]

There’s a lot of fear about the paradigm as well.  Let’s imagine a child – we’ll call him James, say – who displays a severe self-injurious behaviour: banging his head into the wall.  James parents’ could easily look at the pathology paradigm and hear, “We will change James so that he stops injuring himself.”  Then, if they looked at the neurodiversity paradigm, they might hear, “James is valuable just as he is, and doesn’t need to change.”  Naturally, they’d be horrified by the implication that he should go on banging his head undisturbed.

Indeed, if we took the neurodiversity paradigm to a ridiculous extreme – if we said that all human neurodiversity was both good and sacrosanct – then I admit we would be in quite a mess.  Perhaps an even worse mess than if we followed the pathology paradigm to its extremes.  Let’s think back to Sally, trying to cope with peer rejection and victimization in her school.  If we said that all mental variation was sacrosanct, not only would we be unable to ever do any sort of intervention to teach Sally skills that could help her protect herself from bullies, but we would arguably be unable to restrain the behaviour of Sally’s bullies, because that would be changing the bullies.  For that matter, we wouldn’t even be able to teach Sally or her peers in school at all, because teaching them subjects like math and English would technically be changing their minds!

Clearly, when we say that neurodiversity is valuable, that the diversity of brains and minds is valuable, we have something very different in mind.

Now, we could instead say that the neurodiversity paradigm is about fostering and respecting the diversity of brains and minds that make it possible to run a complex, interconnected society like our own – thus excluding any variation deemed valueless to society (like bullying, poor English, or poor math).  However, this takes us too far in the opposite direction.  Before, our problem was that we couldn’t change any human mental variation.  But if we were to adopt the proposal that the neurodiversity paradigm is about fostering only the neurodiversity that is valuable due to its social contribution, we could find ourselves dealing with the same sorts of problems as the pathology paradigm.  If and when we encounter neurodiversity that does not contribute to society, or appear likely to contribute in the future, it would not be protected, and thus we would risk causing mental health damage to anyone whose neurodivergence we deem valueless.

So what is the neurodiversity paradigm, really?  (Or rather, what should the neurodiversity paradigm be?)

Well, it’s certainly a rejection of one idea fundamental to the pathology paradigm: that the individual is a problem if they ever fail to live up to some normative ideal.  It’s a rejection of the idea that people’s differences are always at fault.

Instead, the neurodiversity paradigm directs us to consider the individual in their whole context.  It invites us to consider interactions between the individual and other individuals around them, or between the individual and the physical spaces around them.  It reminds us that sometimes it’s appropriate to modify those contexts in order to protect the individual.  We can teach Sally’s peers about prosocial behaviour and encourage them to accept her.  We can build physical spaces in such a way that they don’t inflict sensory distress on autistic people.  We can conduct functional behaviour assessments to identify and eliminate the environmental causes of challenging behaviours.[2]  All of these interventions are fundamentally grounded in the logic of the neurodiversity paradigm, not the pathology paradigm.

But how do we modify the individual?  There are clearly cases when it is necessary – just think of the parents struggling to keep James from banging his head on the wall.  Or consider Sally’s mental health challenges – we don’t want her to be miserable!

Well, the neurodiversity paradigm just reminds us that human variation has value.  We want a variety of types of people in our society, because that variety enriches society as a whole.  But we also don’t want to make people feel bad for being who they are.  This last statement – “for being who they are” – is crucial.  Some forms of human variation reflect variation in people’s basic personalities.  They’re variation in the things that fundamentally make up a person, that make them who they are.  We can rarely change someone’s basic personality, and if we try, then remember what we discussed earlier: we risk telling the person that there’s something fundamentally wrong with them.  Neurodiversity of personality is especially precious to us.

There’s also variation in things that are less core to our personalities.  Depression, for example, we might imagine as a layer of miserableness grafted on top of someone’s fundamental personality.  It’s definitely okay to try to get rid of depression if we can do it without rejecting the person’s personality![3]  Social skills are skills, and it is okay to try to teach someone skills if we can do it effectively and in a way that doesn’t demean them.[4]  I’m not sure exactly what self-injurious behaviours are – (problematic) coping mechanisms, maybe? – but I’m pretty sure they’re not a core part of personality either.

So, we have a distinction between two types of neurodiversity – personality and non-personality diversity – and personality variation generally has much, much more value than non-personality variation.  This distinction, though, doesn’t yet cover everything.  Sexual orientation is probably not really a core part of personality, but it’s something that exists naturally and which can’t really be altered (not that there is, of course, any reason to attempt to alter it, or any justification for attempting to alter it).  Attempting to alter sexual orientation will simply risk causing damage to individuals’ mental health.  Thus, we can distinguish variation that is plastic from variation that is largely static and largely unalterable.  More-or-less unalterable mental variation is precious, because interventions to destroy or change it would be futile and harmful.

There’s also another dimension, identity, that becomes relevant here.  In the modern world, sexual orientation has emerged as part of individual identity, and an assault on identity is perhaps comparable to an assault on personality.  Thus, neurodiversity that is a positive part of anyone’s identity is precious as well.

Moreover, we have to consider whether mental variation is innate or acquired.  If something about a person is present very early in development, that’s obviously a very different situation than if it emerges much later on.  Schizophrenia, for example, is generally acquired in early adulthood.  If a major neurodivergence is acquired late in development, intervening to eliminate it can, in a sense, be said to preserve the individual’s original personality and identity, to preserve natural human neurodiversity rather than destroy it.  Thus, if and when a major, personality-level change is acquired later in life, it shouldn’t automatically have the protection that we ordinarily give to personality variation, unless the individual accepts the change and absorbs it as a positive part of their identity.

But none of this means that all plastic, non-personality, non-identity neurodiversity is worthless. On the contrary.  If someone has a unique or special skill, something in which they can take pride, then that obviously has value.  There is also a potential for psychological damage if we refuse to accept something about a person that distinguishes them from others, even if it’s a plastic characteristic that’s not a core part of personality or identity.  When someone feels unequal to others in some area of skill, continued remedial instruction will most likely highlight this perceived insufficiency, even if the individual does learn the skill in the end.  While I said earlier that teaching social skills is okay, done properly, and while I stand by that statement, there can be costs to weigh against the benefits, especially if stigmatizing language is used.

Furthermore, it might sometimes be unclear whether some mental characteristic qualifies as plastic or static, personality or non-personality, or identity or non-identity.  Consider anxiety: anxiety can sometimes be a response to a negative experience, and it can sometimes be grafted on top of a person’s underlying personality, but there’s also a genuine sense in which some people have more anxious temperaments than others.

Therefore, while the distinctions we can draw between personality and non-personality diversity, between identity and non-identity diversity, and between plastic and static diversity are useful, and while they help us to protect people from being told the essence of who they are is wrong, they are not by themselves sufficient for case-by-case decisions about whether we want to intervene with the goal of changing a person.  How do we decide whether or not, in any given case, we should intervene with the intention of changing something about a person?  Well, here’s one very important thing to keep in mind: the neurodiversity paradigm says that mental variation is valuable.  That’s not exactly the same thing as saying that mental variation is sacrosanct.

Ultimately, we want people to be happy.  We want to protect their mental well-being.  This is fundamental.  If anything is sacrosanct, it is the principle that we always want to improve mental well-being.

The neurodiversity paradigm provides us with an ontology – a system of meaning in which to understand the world.  It tells us that each individual has a mind, and it tells us that that mind has value.  It also tells us that the individual is surrounded by an environment, a context, which includes both physical structures and other individuals with their own minds – and all of those minds have value too.  It tells us that some things about these minds have great value, because they are core to personality, or identity, or because they aren’t changeable, while others have less value.

Now, what if someone is not mentally well?  What if someone is suffering, or if someone is likely to be suffering in the future if nothing is done?[4]  What if someone is encountering a barrier that will cause distress, or if they are likely to encounter such a barrier in the future?[6]  Our core goal, remember, is to protect mental well-being.  What do we do?

Well, we have to consider the whole system.  We aren’t in the pathology paradigm – the knee-jerk attempt to fix the individual is not always the correct response.

• Sometimes, the best course of action will be to modify the physical environment, or to modify other individuals around the individual whose mental well-being is at risk.  All else being equal, at least when one is dealing with innate rather than acquired mental variation, environmental modification is preferable to an intervention aimed at changing the person, because this environmental modification carries with it much less risk of conveying the message that a specific individual is somehow deficient, somehow to blame for their own distress and the barriers that afflict them.

• But sometimes, the best course of action will be to modify the individual themselves: to change plastic aspects of the individual that are not central to the personality and identity, such as by teaching a skill.[7]  Any potential negative impact on well-being from the intervention can be balanced against the potential positive impact after the individual learns the skill (a positive impact which could include both the direct benefit of the skill and the indirect benefit, to mental health and self-confidence, of knowing that one has the skill).  Thus, the neurodiversity paradigm is still fully compatible with interventions aimed at changing the person.

Crucially, there is no need to mention “disorder” or “deficit” in this process.  We can still identify groups of people like autistics, ADHD people,[8] and neurotypical people.[9]  Individuals exhibit behaviours.  Some of these behaviours can be described as “autistic.”  The neurotype we might call “Autistic Spectrum Development” does not need to be described any differently than “Typical Development” or any other pattern of development.  We can use language that places all of us on a footing of equality, thereby helping us to confront the stigma that, today, threatens those most vulnerable among us.  We should never use harmful or demeaning language.

At the same time, we can recognize that some of these neurotypes are disabilities that are likely to be associated with barriers within many contexts.  We don’t blame the neurotype and we don’t blame the context, but we acknowledge the poor fit that creates the barriers and disables the individuals.  This justifies giving people with these neurotypes – autistic people, ADHD people, etc. – access to particular services and supports that they may need.

Other neurotypes might not be associated with barriers, but they might still be associated with distress, and this too will require eligibility for some sort of services.

We intervene to improve the fit of the environment and the person, and our intervention can target the environment or the person.  There’s no need to label the individual “deficient” in the process.  We simply say that the individual and their environment don’t fit well together.

This approach not only helps to protect mental health and self-esteem, but it also allows for greater precision in intervention decisions.  It helps us hone in on whatever strategy will be most effective in promoting well-being, where today we still have the knee-jerk response of intervening on individual “deficits.”  Yes, the pathology paradigm is in crisis, and yes, people often ignore it, but we usually don’t start ignoring it until its failure in some given area has become blatantly obvious.  We probably still devote too many resources towards intervening to change individuals and not enough towards changing environments.  I recently saw a review paper (Scott et al., 2018) reporting that lots of the published research on employment interventions for autistic people is about skills training, not things like job coaching or help with the job search process.  Actual employment status wasn’t even an outcome in the majority of studies – most of them examined changes in vocational skills.  This is a case where the pathology paradigm has guided the research agenda towards intervening on the individual with the aim of reducing individual “deficits,” even though the most effective strategy in the circumstances will probably be something like job coaching.  (At a trend level, job skills training in high school actually predicts lower odds of employment; Carter et al., 2012.)  The neurodiversity paradigm would direct us away from the knee-jerk attempt to correct deficits and towards considering the interaction of the prospective employee and the surrounding social contexts of the job search and the workplace, which would guide us towards more effective interventions like job coaching.

Beyond the Clinic

So far, we’ve mainly considered how the neurodiversity paradigm applies to clinicians: how it applies to diagnosis, intervention, etc.  However, another advantage of the neurodiversity paradigm is that it allows us to look at neurotypes as something more than pathologies.  Traditionally, research has tended to be about characterizing the “deficits” of people with a given neurotype, or judging whether a given intervention can reduce these “deficits.”  This type of research is still possible within the neurodiversity paradigm (albeit with a modified, less stigmatizing jargon): we can characterize the behaviours or biology associated with a given neurotype, and of course we want to know as much as possible about the relative effectiveness of different interventions.

But with the neurodiversity paradigm, we can also ask many other questions.  Nick Walker’s definition of the neurodiversity paradigm includes three principles, two of which we’ve already covered: (1) that human neurodiversity is valuable, and (2) that there is no normative or “right” style of neurocognitive functioning.  We discussed how human neurodiversity is valuable and we’ve discussed how it’s inappropriate to make some a priori judgement that somebody’s neurotype is better than somebody else’s.  However, we haven’t talked about the third principle, which is:

“The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.”

When we study ethnicity, gender, and culture, we can ask a bunch of interesting questions.  How has a given ethnicity, gender, or culture oppressed another?  What are the negative effects of inequality between genders and ethnicities?  What sort of biases might people of one ethnicity or gender have against another?  How do cultures construct gender and ethnicity?  How do different cultures permit different views of the world?  And so forth.

We can ask similar questions about human neurodiversity.  How have people of different neurotypes interacted with one another, and how have some neurotypes been subjected to oppression?  What are the effects of inequality between neurotypes?  What sort of biases do we have against certain neurotypes, and what are the effects of this ableism?  How does culture construct neurotypes and neurodiversity?  How do different neurotypes permit different views of the world?  And so forth.

Thus, instead of solely permitting the use of the clinical lens to investigate mental and brain variation, the neurodiversity paradigm moves human neurodiversity into the social sciences: we can apply the clinical lens, in modified form, but we can also do much more.

Neurodiversity Applies to Everyone

Many people (e.g., Jaarsma & Wellin, 2012) have suggested that the neurodiversity paradigm only makes sense when applied to so-called “high-functioning” autistics: those with average or superior cognitive abilities.  This response would preserve the pathology paradigm for all dealings with “low-functioning” autistics.

However, the neurodiversity paradigm as I have defined it here is a paradigm in the truest sense of the word.  It is intended as a bedrock on which we can construct an approach to human variation: not only to autistic variation, but all human mental variation, all human neurodiversity.  It is certainly not intended as an approach which is only to be applied to one group of autistics – those with IQs over 70 – and not to others.

Earlier, we discussed the case of James, an autistic child engaging in a severe self-injurious behaviour: banging his head on the wall.  In the neurodiversity paradigm I’ve laid out, there’s nothing stopping James’ parents from working to put a stop to this behaviour in the most effective way possible, regardless of whether that happens to involve intervening to change James or his environment or both, because the self-injurious behaviour is undoubtedly detrimental to James’ well-being.

We could also imagine that James doesn’t have spoken language.  Again, there’s nothing in the neurodiversity paradigm to stop people from teaching James language.  Speaking language is a skill, and a very useful one.  Everyone who knows a language learns it at some point; some people just need more help than others.  I think someone’s lack of language will rarely be part of their identity, let alone their personality.  However, if one intervened to teach spoken language to James, there’s a need to be sensitive and not cause distress to James by sending the message that he is deficient without spoken language.  Systematically engaging a child in fun interactions is an excellent way to teach spoken language: we might not have to make a big production of it.

Furthermore, it’s possible that James will do better with augmentative & alternative communication (AAC) than with an outright attempt to teach speech.  Again, the neurodiversity paradigm copes very well with this: use of AAC is not exactly “normative” behaviour (and it thus sits uneasily with the pathology paradigm), but it would promote James’ mental well-being by helping him to communicate his wants and needs.

On the other hand, our application of the neurodiversity paradigm can warn us when we shouldn’t be intervening to change James.  Let’s imagine that a functional behaviour assessment shows that James’ self-injurious behaviours are related to something in his environmental context.  Well, in that case, the path forwards is clear: we change the environment, not James.

Similarly, let’s imagine that James stims, but without injuring himself.  Well, if we apply the pathology paradigm, stimming is abnormal and deviant and it probably impairs something-or-other, so we have to get rid of it.  If we apply the neurodiversity paradigm, we’ll probably see that it enhances James’ mental well-being, and at the very least isn’t harmful, so we’ll know to leave it alone.[10]

Thus, there is no sense in which the neurodiversity paradigm – at least as I’ve described it here – can be said to apply to only one group.  It’s not a crude, inflexible dictum that we can never intervene to change any form of mental variation.  It’s a paradigm and an ontology, which does nothing more than give us an organizing framework that helps us protect people’s well-being in a way that the crude pathology paradigm does not.  It’s a way of moving us away from the stigmatizing language of “deficit” and “disorder,” a way of forcing us to avoid judging some people inferior and to instead see the value inherent in our neurodiversity, and a way of forcing us to carefully consider and choose the best ways of intervening when we must protect people’s well-being.

Footnotes

[1] If you think back to the footnote in Part I, our current uncertainty about the neurodiversity paradigm’s meaning is sort of like how the nature of the heliocentric model was unclear before Kepler came along and said that orbits were elliptical.  Indeed, the paradigm shift between when Copernicus revived the heliocentric model and when Kepler showed that orbits were elliptical was an extremely messy and confusing time.  There were strange hybrid systems and everything.

[2] [Added 2018/10/29].  I realize that I should probably clarify this statement a little.

I’m not saying that functional behaviour assessment is always appropriate under the neurodiversity paradigm, nor am I saying that the language of FBA is unproblematic.  While FBA does direct our attention towards changes we can make in the environment, which is consistent with the neurodiversity paradigm, it also pathologizes these “challenging behaviours.”  In some cases, like the self-injurious behaviours discussed later in this post, we can probably all agree that we want to get rid of the behaviour.  Self-injurious behaviours are kind of undesirable, period.  However, in other cases, we might not want to pathologize the behaviour so readily.  As with all powerful and versatile intervention techniques, there is a chance that FBA can be misused through application to the wrong sorts of targets.

However, insofar as FBA strives to change the environment, I still believe that the FBA approach is fundamentally inconsistent with the pathology paradigm.

[3] And, as discussed earlier at some length, it can be rather self-defeating to try to get rid of someone’s depression by rejecting them as a person.

[4] As a quick aside, I feel the need to remind everyone that teaching social skills effectively requires real-world practice, not just worksheets and role-play.

[5] Note that we can accommodate things like severe antisocial conduct within this paradigm, because even if the individual behaving antisocially does not suffer (which is disputable in many cases), distress can be inflicted on other people around them.  This is not intended solely as a framework for autism: the intention is that antisocial conduct, and anything else, should be accommodated within it.

When we weigh the well-being of different individuals against one another, I would suggest something sounding a little like John Rawls’ “Difference Principle” be used: we want the least mentally well among us to be as mentally well as possible.  We particularly want to minimize the distress of the most distressed.  We don’t just want to minimize average distress.

[6] Note that I am not convinced that including “impairment” as a justification for intervention in itself is appropriate: it seems to me that an “impairment” is only a problem if it is inflicting distress now or can reasonably be expected to inflict distress in the future.  Furthermore, I do not believe it is appropriate to judge that an “impairment” exists within the individual: I prefer to consider that there is a “barrier” created when the interaction between the characteristics of the individual and their context frustrates the individual’s attempts to achieve goals.  This barrier, it can be presumed, will lead to distress.  Thus, we can identify neurodivergences like autism, but not as impairments: as forms of development and neurodiversity that are likely to lead to barriers within many contemporary contexts, and which therefore count as disabilities.

[7] I suppose there could be some cases when attempting to alter an individual’s fundamental personality and identity may be the best way of protecting their well-being, but I don’t imagine those circumstances being common.

[8] Except that ADHD stands for “Attention-Deficit/Hyperactivity Disorder,” which is a stigmatizing deficit-language term.  ADHD may well be associated with barriers in most contexts, but remember, we are going to decide whether or not to intervene to alter the person by considering the best way of promoting well-being.  We can still prescribe Ritalin if it promotes well-being, but we don’t make the a priori judgement that the correct course of action is always normalizing the “disordered” person.  Thus, instead of using the deficit-language term “ADHD”, we could use a neutral phrase like “Atypical Attention-Regulation Development.”

[9] It’s a little-known but important fact that the concept of a “neurotypical” person was invented by autistic advocates.  Before, we hadn’t really considered “neurotypical” people to be a neurotype in their own right.  Traditional research just compared diagnosed people with “deficits” to “normal” or “healthy” controls.

[10] There’s always subtleties, though.  While a stimming individual with a very visible disability might not experience too many negative reactions from strangers, a stimming individual with a more invisible disability might get negative reactions more often, and it might not be immediately practically feasible to ensure that every person who might ever encounter a stimming autistic would immediately and unjudgementally accept the stimming behaviour.  Thus, some people may wish to substitute a more socially acceptable behaviour, like squeezing a stress ball, in some public contexts.

References

Carter, E. W., Austin, D., & Trainor, A. A. (2012). Predictors of postschool employment outcomes for young adults with severe disabilities. Journal of Disability Policy Studies, 23(1), 50–63. https://doi.org/10.1177/1044207311414680

Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1), 20–30. https://doi.org/10.1007/s10728-011-0169-9

Singer, J. (2016). NeuroDiversity: The birth of an idea. Kindle edition. Original work published 1998

Scott, M., Milbourn, B., Falkmer, M., Black, M., Bӧlte, S., Halladay, A., … Girdler, S. (2018). Factors impacting employment for people with autism spectrum disorder: A scoping review. Autism. Advance online publication. https://doi.org/10.1177/1362361318787789

Walker, N. (2013, August 16). Throw away the master’s tools: Liberating ourselves from the pathology paradigm [Blog post]. Neurocosmopolitanism: Nick Walker’s notes on neurodiversity, autism, and cognitive liberation. Retrieved from http://neurocosmopolitanism.com/throw-away-the-masters-tools-liberating-ourselves-from-the-pathology-paradigm/

Walker, N. (2014, September 27). Neurodiversity: Some basic terms and definitions [Blog post]. Neurocosmopolitanism: Nick Walker’s notes on neurodiversity, autism, and cognitive liberation. Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/