Sometimes, the best way to see where our conventional assumptions can go wrong is to consider concrete examples.

Within the pathology paradigm, we assume that autistic people are disordered, that they have deficits in different skills and abilities, but we don’t critically examine how autistic people’s environments and the typically-developing people within these environments might contribute to autistic people’s disabilities.  We ignore the possibility that the typically-developing person might be something less than a normative ideal of perfection.

Autism and Empathy

Damian Milton (2012), another autistic scholar who is internationally known for his work, tackles these traditional assumptions head-on when he writes about a “double empathy problem.”

Traditionally, many researchers have said that autistic people lack “empathy.”  This is a very stigmatizing claim, and one that ignores an important distinction between different types of “empathy”: cognitive and affective (Blair, 2008).  Cognitive empathy is perspective-taking: the ability to recognize and understand another person’s mental states and feelings.  (Somewhat confusingly, you’ll often hear cognitive empathy referred to as “Theory of Mind.”)  Affective empathy is emotional: it is concerned with experiencing the same emotions as another person.

Unfortunately, it can be very difficult to separate these types of empathy in practice.  It is not easy to share in the emotions of another person if one is not sure what emotions somebody is experiencing!  Thus, it can be hard to pinpoint whether behaviour is due to a failure of affective empathy or a failure of cognitive empathy.  However, in general, despite evidence suggesting that autistic people often have difficulty with cognitive empathy and perspective-taking, a number of studies do suggest that affective empathy is intact in autism (e.g., Dziobek et al., 2008; Jones et al., 2010).  It has even suggested that autistic people have heighted emotional empathy (Smith, 2009).  Thus, it seems that autistic people do care about others, as long as we know what others are thinking and feeling.

We’re also, I should add, an exceptionally nonviolent group of people.  Despite frequently being victims of violence.[1]

The Double Empathy Problem

But Milton’s critique of the idea of an autistic empathy deficit goes farther than all of this.  Rather than simply pointing out how the idea of an empathy deficit has been simplified and how it can heighten stigma, Milton continued down a path that had already explored by a number of autistic advocates.  Milton decided to put neurotypical people under scrutiny.  And after doing so, he concluded that the issue of empathy was not a one-sided problem (an empathy deficit from autistic people), but a two-sided issue.

Milton wrote that:

“The ‘theory of mind’ and ‘empathy’ so lauded in normative psychological models of human interaction refers to the ability a ‘non-autistic spectrum’ (non-AS) individual has to assume understandings of the mental states and motives of other people. When such ‘empathy’ is applied toward an ‘autistic person’, however, it is often wildly inaccurate in its measure. Such attempts are often felt as invasive, imposing and threatening by an ‘autistic person’, especially when protestations to the contrary are ignored by the non-AS person doing the ‘empathising’.”

While neurotypical people might be very good at understanding how other neurotypicals think, they might struggle more with autistic people.  For example, Temple Grandin (1995/2006, pp. 82, 99) points out that neurotypical people can lack empathy for autistic people’s sensory sensitivities.  These experiences are foreign to most neurotypical people, and it’s easy for people to dismiss the importance of our sensory struggles – or even to deny them entirely.

There’s even empirical evidence for some of this.  Heasman and Gillespie (2017) found that autistic people are actually fairly good at predicting what their relatives think about them – even though the relatives tended to think the autistic people were poor perspective-takers.  Furthermore, despite understanding how their relatives view them, the autistic people disagreed with some of their relatives’ judgements.

Unfortunately, because autistic people generally do occupy an inferior and marginalized position in society, neurotypicals’ misunderstandings can be extremely damaging.  The very fact that this double empathy problem has so long been seen as a one-way problem – as an empathy deficit in autistic people – is just one example of how the neurotypical perspective dominates our current understanding of autism, which to a large extent remains grounded in the pathology paradigm.  Because of the pathology paradigm, interventions have overwhelmingly striven to change autistic people – while seldom considering how neurotypical people and society at large could be changed.  Indeed, the very deficit language of this pathology paradigm effectively tells autistic people, many of whom are already struggling with mental health and self-acceptance, that there is something wrong with them.

A Double Flexibility Problem?

And the double empathy problem is far from the only example of a situation in which neurotypicals are sometimes guilty of showing the same deficits they like to attribute to autistic people.  Another example is that of rigidity, inflexibility, and insistence on sameness.

It’s true that many autistic people don’t like uncertainty.  It’s true that we usually like things to happen in predictable ways.  It’s true that we can sometimes demand that things must happen in some specific predictable way.  And it’s true that we can sometimes take this to an extreme, where it becomes problematic.

However, there are many ways in which neurotypical people can be extraordinarily rigid and dogmatic.  The social norms, customs, and conventions of societies, organizations, and institutions are often implicitly held to be sacrosanct.  Nobody violates these norms, for to do so would be unthinkable.  There can also be explicit rules, held even more sacred.  Often, the cost of violating some custom is minimal, but neurotypicals can insist on following it anyway.

To take just one example, I once left my Grade 6 classroom on a field trip and left some stuff in my desk – for I had been told that the classroom would remain empty while we were away.  On returning, I was startled to find a class of students occupying the room (despite what I had been told earlier), and out of fear that they might steal my stuff, I positioned myself in the room where I could keep an eye on them.  Now, I wasn’t being disruptive or anything – I was just quietly watching.  However, the teacher in the room took exception to my arrival.  I forget the details, but I suppose he insisted my presence was disruptive and that I should leave – or perhaps he just told me to leave without justifying himself; I can’t recall.  After dismissing my (reasonable) concerns, he resorted to the expedient of violently tackling me to the ground in the hallway.

I suppose technically he got me out of the room, but for all practical intents and purposes, this was a disastrous outcome.  The lesson was completely disrupted.  I got physically assaulted.  He got to be the person that physically assaulted me.  All things considered, he got off pretty much without punishment, but still, nobody was happy.

This unpleasant situation certainly wasn’t caused by my inflexibility alone.  Sure, as I’m looking back on my 11-year-old self, I’m sure there are things I could have done better.  But the teacher’s own inflexibility clearly played an even bigger role.  There were many ways he could have flexibly solved the issue.  For example, he could have allowed me to go in, grab my stuff, and leave.  Problem solved!  But, inflexibly, he chose not to.

We can see the double flexibility problem at work in many other areas.  Social interactions are full of meaningless, unnecessary rituals which societies of neurotypical people value highly.  Why do we insist on asking people how they are doing when we don’t really expect them to give an honest answer?  Is this not a perfectly bizarre example of a ritual?  And is it not the case that neurotypical people insist that autistics should follow this ritual, whether or not we think it makes any sense?

To give another example, anyone who has had to deal with any sort of large, rigid bureaucracy will surely be able to see how one can call such institutions inflexible.

Furthermore, if an autistic person has an unusual need, one that is related to their unusual neurotype, others around them will be often reluctant to allow them to receive an appropriate accommodation – even if the costs of the accommodation are minimal.

To illustrate what I mean by this, consider the example of clapping, of applause.  Autistic advocates have been very clear that it would be easier for them to attend autism conferences and participate in conversations about their own neurotype if attendees would stop clapping (because clapping generates noise, which can cause sensory distress).  Instead, attendees should raise their hands above their heads and flap them (a trick we stole from the Deaf community).  Certain neurotypicals have come up with some pretty bizarre arguments to justify why they cannot do this – for example, some say that they need clapping to judge whether an audience appreciated a presentation or not.  To put things bluntly, this simply doesn’t make any sense – one can judge the level of audience approval by looking at how long people choose to flap!  It seems like some neurotypicals are insisting on clapping for no reason other than an inflexible adherence to social convention, even though this causes sensory distress.

I could go on and provide numerous other examples of neurotypical inflexibility, but I hope these suffice.

Ultimately, autistic people lack power in our society – neurotypicals are usually the people in control.  Thus, I think that it is probably autistic people who are most often forced to give in to the inflexible demands of neurotypical people; neurotypicals probably have to bow to the inflexible demands of autists much less frequently.

The DSM Parodies

Perhaps the most memorable critique of our tendency to see deficit in the autistic person, while failing to scrutinize the neurotypical person, comes from various parodies of the clinical diagnostic criteria for autism.  In these parodies, the authors take all of the stigmatizing language found in these criteria (“deficit,” “severity,” “restricted,” etc.) and write a definition of “Neurotypical Disorder” (or similar) using these terms.

The first of these to appear on the web, as far as I’m aware, was Muskie’s Institute for the Study of the Neurologically Typical in the late 1990s.  It’s no longer online, but thanks to the wonders of the internet archive, one can still see its definition of “Neurotypic Disorder.”  In 2003, “Allism: an introduction to a little-known condition” surfaced.  And in the years since, many, many more have been added.

The Bottom Line

I hope, from all of this, that my point is clear.  We can’t simply assert that deficit comes from the autistic person.

Theoretically, in order to say with complete certainty that something is a deficit located in a person, and not in society, we’d have to run through all possible counterfactual scenarios – all the possible worlds and societies in which we could put a person – and demonstrate that the behaviour was a deficit in all of them.  Since imagining all the counterfactual scenarios is pretty much impossible, it’s hard to prove that anything is a true deficit located solely and entirely within a person.

I will grant that some things are difficult to see in any light except deficit.  How can depression be good?  How can self-injurious behaviour be good?  What’s good about a lack of functional communication?  How are any of these not a deficit?

Well, perhaps if we were able run through every possible world, we’d find they indeed are deficits.  I try not to be an ideologue: I admit it’s entirely within the realm of possibility.  However, I think that the question of whether something is a deficit or not isn’t the most important or interesting thing we could ask.  It’s a very abstract question, and I think answering it doesn’t really help us very much.  It doesn’t actually help us to treat the person (because we can intervene to change the person without calling the person deficient, just like we teach math and science to neurotypical kids in school without calling them deficient).  Furthermore, if we end up hurting the person self-esteem by calling them deficient, it can even be harmful.

When we see someone who is not well, who is suffering from something related to their neurotype, I think we need to instead ask what the best way of intervening is.  Is it likely to be most practical and effective (in terms of improving well-being) to intervene by trying to change something about the person, or something about their environment, or both?  This gives us the answer we need to move forwards.

What are your thoughts?  Can you think of any other cases where “deficit” is a two-way street?  Or do you disagree with me – and why?  Please add comments!

Footnotes

[1] This risk of victimization highlights the social irresponsibility inherent in claiming that autistic people lack empathy.  Not only is the claim far too simplistic, as we have seen, but it is deeply stigmatizing.  Autistic people are a vulnerable population: besides the risk of violence we face, we are a population with diminished access to education, employment, and many other things.  Stigmatizing claims, like claims of an empathy deficit, are deeply threatening to vulnerable, marginalized groups like autistic people.

All too often, researchers in the autism field do not serve the interests of autistic people, but may even operate in ways that exploit us: ways that give them publications and that advance their careers, but that leave us no better off, and perhaps even worse off, than we were before.  This is not to say that all researchers are like this – I’m a researcher and I certainly hope that I am not! – but it is a problematic situation.

References

Blair, R. J. R. (2008). Fine cuts of empathy and the amygdala: Dissociable deficits in psychopathy and autism. Quarterly Journal of Experimental Psychology, 61(1), 157–170. https://doi.org/10.1080/17470210701508855

Dziobek, I., Rogers, K., Fleck, S., Bahnemann, M., Heekeren, H. R., Wolf, O. T., & Convit, A. (2008). Dissociation of cognitive and emotional empathy in adults with Asperger syndrome using the Multifaceted Empathy Test (MET). Journal of Autism and Developmental Disorders, 38(3), 464–473. https://doi.org/10.1007/s10803-007-0486-x

Grandin, T. (2006). Thinking in pictures: My life with autism. New York: Vintage Books. Original work published 1995

Heasman, B., & Gillespie, A. (2017). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members. Autism. https://doi.org/10.1177/1362361317708287

Jones, A. P., Happé, F. G. E., Gilbert, F., Burnett, S., & Viding, E. (2010). Feeling, caring, knowing: Different types of empathy deficit in boys with psychopathic tendencies and autism spectrum disorder. Journal of Child Psychology and Psychiatry, 51(11), 1188–1197. https://doi.org/10.1111/j.1469-7610.2010.02280.x

Main, A. (2003). Allism: an introduction to a little-known condition. Retrieved from https://fysh.org/~zefram/allism/allism_intro.txt

Milton, D. E. M. (2012). On the ontological status of autism: The “double empathy” problem. Disability and Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008

Muskie. (1998). DSN-IV (The diagnostic and statistical manual of ‘normal’ disorders). Institute for the study of the neurologically typical. Retrieved from https://web.archive.org/web/20130131005649/http://isnt.autistics.org/

Smith, A. (2009). The empathy imbalance hypothesis of autism: A theoretical approach to cognitive and emotional empathy in autistic development. The Psychological Record, 59(2), 489–510. https://doi.org/10.1007/BF03395663