The Pathology Paradigm

Most of us have a basic idea of how psychological interventions work.  The “disordered” person has a deficit, a deficiency.  We intervene to eliminate or reduce the deficit, improving the “disordered” person’s ability to function in the world.  Ultimately, we want to eliminate the “disorder” entirely if possible.  It’s neat and logical.  We can refer to this set of ideas and assumptions as the pathology paradigm (see Walker, 2013).

There’s also a number of serious problems with this paradigm.  For example, we know that many autistic people are already experiencing terrible mental health challenges: depression, anxiety, eating disorders, and more.  We also know that autism is a pervasive type of neurodevelopment, shaping multiple aspects of the person.  Where does the person end and where does their autism begin?  It’s not clear that we can separate the two.  This pervasiveness is precisely why we used to refer to autism as “pervasive developmental disorder.”

So, to recap, we have three facts.  One: autistic people can have mental health challenges.  Two: autism is a fundamental and pervasive part of a person.  Three: in the pathology paradigm, autism is also considered a deficit that needs to be corrected.  Thus, in the traditional pathology paradigm, we’re effectively going around telling a population of people with poor self-esteem and a high risk of depression that there’s something fundamentally wrong with them.  Implying that someone is fundamentally flawed as a person, and behaving accordingly, is not necessarily a good way of protecting their self-esteem.

This is one of the many reasons why many autistic people have raised serious concerns about the pathology paradigm and the project of normalizing autistic people.  For example, Damian Milton (2012) seems to be expressing this fear in the statement that “attempts to normalise people through behaviourist means or any other, would send them into disequilibrium and a state of personal anomie and possibly rather than leading someone away from mental ill-health, be actually leading someone toward it.”

Indeed, in the foundational essay “Don’t Mourn for Us” by Jim Sinclair (1993), which arguably started the autistic advocacy movement, we hear deep concern about the impact of the drive for normalization on the well-being of the autistic person:

“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”

Now, if you are someone who has been trained and taught within the assumptions and practices of the pathology paradigm, you might not see where we’re going with this.  Yes, you can probably accept the idea that calling someone disordered and deficient could be bad for mental health, but you might be confused about what we are supposed to do instead.  Are we really supposed to just stop trying to intervene to change people?  Are we supposed to simply ignore the fact that autistic people often do lack important skills?  Are we supposed to do nothing to teach these skills?

Of course not!  That’s not the point at all, and I’ll get to that later.  But first, let us consider what the pathology paradigm tells us to do.

Let’s take a simple example.  Let’s put ourselves into the role of a clinician or professional.  An autistic teen – let’s say that they’re a she, and that her name is Sally – has been struggling with the social dynamics of her school.  She’s extremely interested in science fiction and biology, but her attempts to engage classmates in discussion of these topics have failed.  Sally has been unable to make friends, and some of her peers bully her.  She’s extremely lonely, and her mental health is slipping.

Now, let’s take the pathology paradigm to its logical conclusion.  Sally has a deficit in her social skills.  Sally must be fixed – she must be made normal.  We must get rid of Sally’s unusual interests, for they impair her social functioning.  We must teach her better social skills.  We must make her into a copy of her peers, allowing her to gain social acceptance by giving up that which makes her unique – that which makes her “Sally.”  Hopefully you’re cringing by now.

You might also be calling, “Straw man!”  You might be saying that I’m not actually representing the position of most adherents of the pathology paradigm.  That’s technically true, but I have accurately represented the pathology paradigm itself.

Paradigm Shift

Yet it is true that most advocates of the pathology paradigm won’t really go to these extremes.  Those with any critical thinking skills – or even common sense – will recognize that the situation is much more complex than the pathology paradigm dictates.  Sally’s unusual interests might be sources of strength someday – and more to the point, she enjoys them.  If the professional or clinician knows their stuff, they’ll try to find a venue where Sally can find others interested in the same topics – a school club, or a group she could attend outside of school.  Furthermore, the school could implement a peer-mediated intervention to encourage Sally’s peers to accept her for who she is, and the school could punish Sally’s classmates when they bully her.  A competent clinician or professional might still want to work to protect Sally’s mental health and might want to work to teach Sally some skills she could use to help navigate social situations and protect herself from bullying, and but that’s it.

Yet nothing in the pathology paradigm provides for the idea of a peer-mediated intervention, where we actually intervene on the “normative” neurotypical children and train them to be more accepting of the “deficient” children.  The idea that an unusual interest that impairs Sally in one context could be a source of strength in another context also sits uneasily within the pathology paradigm.

So what happened to the pathology paradigm?  Do its own adherents no longer believe in it?

Well, let’s consider how paradigms work.  The term “paradigm” as I’m using it here comes from the work of Kuhn (1962/2012), a philosopher of the “hard” sciences.  He noticed how scientists would often spend ages stuck with one set of fundamental assumptions and ideas that they used to understand the world.  We can refer to these assumptions and ideas as a paradigm.  Scientists would base their entire work on these fundamental assumptions, but over time, “anomalies” would pile up – problems that the paradigm couldn’t explain away properly.

One classic example of this is the Copernican Revolution and the shift from a geocentric paradigm of the solar system (with Earth at the centre of the universe) to a heliocentric paradigm (with the sun at the centre).  From the perspective of an observer on Earth, the planets sometimes seem to slow down or even travel backwards.  That’s because the planets don’t orbit the Earth; both Earth and the other planets orbit the sun.  This “retrograde motion” was a serious anomaly for the geocentric paradigm.  To explain away the anomaly, astronomers added little sub-orbits called epicycles, so that the planets were rotating in little circles (sometimes taking them backwards) even as they circled around the Earth in a big circle.  As astronomers made more and more precise observations of the sky, they just had to keep adding more and more epicycles to cope.  Finally, as the geocentric system became increasingly complex and untenable, the anomalies built up to the point that the paradigm was in crisis.  Then Copernicus came along and suggested that maybe the Earth wasn’t at the centre of the universe after all.  Instead, he proposed the heliocentric paradigm.  This wasn’t an entirely new idea, but because the geocentric paradigm was now in crisis, astronomers eventually switched over to the new system and changed their fundamental assumptions about the nature of reality.[1]  This was a paradigm shift.

In the field of neurodevelopment today, we’re already in the middle of a paradigm shift.  The pathology paradigm is now being used in an inconsistent, illogical way as clinicians, professionals, and researchers try desperately to paper over the anomalies that run deeply through it.  For example:

• While clinicians still cling to the stigmatizing language which grounds all “deficit” and “disorder” within the atypical individual and not their context, many or most nevertheless recognize that it sometimes makes as much or more sense to intervene to change the context as it does to change the autistic child.
• While many researchers still pursue biomedical research into the causes of autism, hoping that their discoveries will allow for the “curing” of the “disorder”, most researchers recognize that many cases of autism are idiopathic, lacking in a clear causal origin, and that “curing” or eliminating these cases will be impossible.
• While many clinicians try to treat their autistic clients, they might struggle to balance the pathology paradigm’s demand for elimination of the autistic person’s atypical behaviour with the clinicians’ need to protect their clients’ mental health and well-being by showing them positive regard.

If we cared to, we could easily identify many other examples.  The pathology paradigm is in crisis: it is collapsing as we speak.  The paradigm is ridden with anomalies, and the behaviour of those who still try to embrace it is filled with contradictions.

As many people have pointed out, nobody’s normal.  Furthermore, the thought of living in a world where everyone is precisely normal is actually rather horrifying.

It’s time to find a new paradigm.  We’ll discuss that in Part II.

Footnotes

[1] If we want to be really technical, Copernicus’ system didn’t actually eliminate epicycles, at least not at first.  That’s because he wanted the planets to have perfectly circular orbits, but they really have slightly ovoid or elliptical orbits.  It was another guy – Kepler – who said that the orbits are elliptical.  That was what really showed that the heliocentric system made more sense than the anomaly-ridden geocentric model.

References

Kuhn, T. S. (2012). The structure of scientific revolutions (50th anniv. ed.). Chicago: The University of Chicago Press. [Original work published 1962]

Milton, D. E. M., & Moon, L. (2012). The normalisation agenda and the psycho-emotional disablement of autistic people. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1: 1. Retrieved from http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/9

Sinclair, J. (1993). Don’t mourn for us. Retrieved from http://www.autreat.com/dont_mourn.html

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/