Many people seem to have adopted a curious middle-ground in the neurodiversity debate: many of us will readily concede that so-called “high-functioning” autistic people should be considered within the neurodiversity paradigm, but will still argue that the pathology paradigm should be applied to so-called “low-functioning” people.  We’ll concede that “high-functioning” autistics represent a valuable form of human diversity and that they should be accepted for who they are, but we’ll keep looking for a “cure” to so-called “low-functioning” autism.

I suppose there’s a certain intuitive appeal in the idea of restricting neurodiversity to “high-functioning” people.  However, like many other autistic advocates, I’m going to strongly oppose such a restriction – I’m going to argue that neurodiversity is for everyone.

Levels of Functioning

Before going farther, I should probably clarify that I’m no fan of the terms “high-functioning” and “low-functioning.”  The problems with the way that we use “levels of functioning” terminology are so serious that it’s hard to think of any reasons, other than laziness and inertia, why we haven’t gotten rid of the terms already.

First, the term “low-functioning” is, quite obviously, insulting and disrespectful.  Who would want to be called “low-functioning”?  It’s a perfect example of the type of thoughtless clinical language that can end up causing real damage to people’s self-worth.

Second, we usually base these “level of functioning” distinctions on a single variable: IQ.  Even if we leave aside research which raises important questions around how we measure autistic intelligence (see, e.g., Barbeau et al., 2013; Dawson et al., 2007), intellectual functioning is hardly the only factor related to people’s ability to achieve.  I know people whose IQs fall below 70 who have nevertheless become gainfully employed in the community, and I know people whose IQs fall above 70 who are neither working nor studying, but essentially living full-time in their parents’ basements.  Other people with IQs over 70 do manage to study or work, but many might still have symptoms that seriously interfere with their ability to function in the world.

But this isn’t the point of this post.  Obviously the way we talk about “levels of functioning” is seriously problematic, and we certainly need to change and refine our language,[1] but we do have to deal with the fact that autism – as we define it in our culture – is incredibly heterogeneous.  There are autistic people who are essentially geniuses, and there are non-speaking autistic people who bang their heads and smash the furniture.  Surely there is something to the idea that neurodiversity applies to the former case, but not the latter?

The Neurodiversity Paradigm

Well, actually I don’t think so.  I don’t want to repeat myself endlessly – you’ll find that I’ve written about this in other posts – but the neurodiversity paradigm is not the same as the social model of disability.  The neurodiversity paradigm is not about claiming that all human mental variant is sacrosanct and should never be altered.  If that was the meaning of the neurodiversity paradigm, the paradigm would be absurd: for one thing, we would be unable to treat unpleasant co-occurring anxieties or depression (which, for the record, are at least as likely to affect so-called “high-functioning” people as “low-functioning” people, and probably more so in the case of depression, belying the idea that only those “low-functioning” types need treatment).  Indeed, we’d arguably be unable to teach any kind of knowledge or skill – including things like math and spelling!

The way I see it, the neurodiversity paradigm is about recognizing that interventions to change people should not be our knee-jerk response to any abnormality, and also about recognizing that these interventions can have costs.  It’s about recognizing the fact that telling people they are disordered and valueless has real, genuine mental-health consequences.

But while the neurodiversity paradigm urges us to consider alternatives, it doesn’t say that we should never attempt to change a person.  This is a crucial point, and one of the common misunderstandings we see around the neurodiversity paradigm.

Furthermore, interventions to change a person can be delivered in a more effective and precise manner under the neurodiversity paradigm than under the pathology paradigm.  Take that example of those non-speaking autistic people banging their heads and smashing furniture.  Under the neurodiversity paradigm, we can certainly intervene to stop the head-banging and furniture-smashing, because these behaviours are hardly conductive to these individuals’ well-being.  However, in the neurodiversity paradigm, we have a wider range of intervention options.  If something in an individual’s environment is causing them to smash their head, we can change that environment.  That approach to intervention is both eminently practical and firmly grounded in the logic of the neurodiversity paradigm, not the pathology paradigm.

We can see similar advantages when it comes to non-speaking people’s lack of speech.  Under a strict interpretation of the pathology paradigm, only spoken language is normative and non-pathological, so the proper approach to fostering communication is the teaching of spoken language.  In the neurodiversity paradigm, however, we simply want to enhance individual well-being, and any sort of functional communication (AAC included) will suffice.[2]

In these terms, the neurodiversity paradigm simply seems like common sense – and indeed, I think it is.  As I see it, the pathology paradigm is already dissolving into crisis as practitioners incorporate ideas grounded in the logic of neurodiversity into their approaches.

The Irony of the Cure

But that’s not the only problem with the pathology paradigm.

Autism isn’t curable.  While a small minority of autistic people may eventually stop meeting criteria for their autism diagnosis, that doesn’t necessarily mean they’re restored to perfect neurotypicality.  Brain scans have revealed differences between neurotypical people and autistic people who no longer meet diagnostic criteria (Eigsti et al., 2016), suggesting that, while these so-called “optimal outcome” individuals are able to behave in a neurotypical way on the surface, they’re still compensating for underlying neural differences.  Furthermore, many of these individuals aren’t exactly typically-developing: they will still meet criteria for other divergent neurotypes (Barnevik Olsson et al., 2015).

It’s also important to remember that a cure isn’t really the point.  We say that these autistic people who no longer quality for the diagnosis have an “optimal outcome,” but is are these outcomes really “optimal”?  It sounds like some of these people are having to compensate for their underlying symptoms, and compensation can be stressful and exhausting (Hull et al., 2017) and is associated with depression (Lai et al., 2017).  I’m sure some of these people with “optimal outcomes” are genuinely happy and doing well, but others may not be.  Shouldn’t happiness and well-being be our goal, not the ability to look normal?[3]

Be that as it may, let’s imagine that we’re so deeply enmeshed in the logic of the pathology paradigm that we can’t see any worthy goal except getting rid of autism symptoms.  Let’s imagine that we’re trying to “cure” autism.  Who is going to have the best odds of losing their outward symptoms, and the diagnostic label that comes with them: a “low-functioning” autist or a “high-functioning” one?

The so-called “high-functioning” autist, of course!

This is what I call the irony of the cure.  Many of us want a “cure” for those “low-functioning” autistics (by which we generally mean autistic people with intellectual disabilities), but the reality is that it’s going to be much easier to “cure” the “high-functioning” autistics.  It’s going to be easier to cure the people we’re not trying to cure, and harder to cure the ones that we are trying to cure.  It’s a bit tragic and a bit ridiculous.[4]

Autistic people can try their best to accommodate themselves to the world, but ultimately, this effort will not be wholly successful.  Thus, I think no realistic policy in the autism world can deny the need for the world to accommodate itself to autistic people.

A Focus on Strengths

Finally, let’s think about how, specifically, we will achieve our goal of maximizing happiness and well-being in the individual case of any given autistic person (regardless of their “level of functioning”).  The pathology paradigm demands that we focus on deficits, and as we have seen, the neurodiversity paradigm likewise allows us to investigate and deal with any challenges the individual faces.

However, the neurodiversity paradigm also concerns itself with autistic people’s abilities.  Indeed, the neurodiversity paradigm suggests that having people with different minds can contribute to the betterment of society as a whole.  This is crucial.  For autistic people to achieve success, we must have others around us who believe in our abilities, who believe that we can achieve success.  Low expectations are a self-fulfilling prophecy of failure.  The pathology paradigm, by definition, focuses on deficits and ignores strengths – and as such, it tends to lead to low expectations.

We simply cannot achieve success solely through continually working on our weaknesses.  Success is achieved when we find our strengths and pursue goals that allow us to make use of these strengths.  Again, that doesn’t mean we can’t intervene to help people with an area of weakness – as we have seen, we can – but we can’t work on weaknesses alone while allowing our strengths to atrophy.

Some people’s strengths are less obvious than others, but that doesn’t mean that those strengths don’t exist.  A few days ago I had the pleasure of hearing Edmonton-Wetaskiwin MP Mike Lake speaking about his son Jaden.  While Jaden’s strengths might not be obvious at first glance, he has a remarkable talent for quickly, efficiently, and accurately shelving library books.

Yes, the autism spectrum is broad.  You might even be able to argue that people from one end of the spectrum have more in common with neurotypicals than with autistics from the other end!  But that doesn’t mean that there aren’t some general principles that apply to the entire spectrum.  We must not only consider how we can treat autistic people, but also how we can change society to accommodate autistic people.  We must not only consider autistic people’s weaknesses, but also our strengths.  These principles are grounded in the neurodiversity paradigm, not the pathology paradigm.

Footnotes

[1] Again, this isn’t the point of the post, but I would suggest using language exactly.  For example, if you’re talking about autistic people with IQ’s over/under 70, just say so: talk about autistic people with/without intellectual disabilities.  Yes, there are a few more syllables, but isn’t precision and respect more important?

I only use the terms “high-functioning” and “low-functioning” here at all because I’m arguing against the people who say that neurodiversity doesn’t apply to “low-functioning” people, and I kind of have to use their terms to make myself clear.  Like Spock in Star Trek, I am “simply attempting to use your vernacular to convey an idea.”  And I’m very sorry for any offence caused in the process.

[2] For a long time, people fretted about the idea that AAC might interfere with the development of spoken language.  We now know otherwise – AAC actually helps people develop spoken language.

[3] And let’s remember that happiness and a cure are often going to be opposed to one another.  The pathology paradigm is all about telling people how disordered and deficient they are, and how is that supposed to make people happy?

[4] It’s true that autistic people with early developmental delays often gain some IQ points during early intervention, but most of these people are just going to become autistic people without intellectual disabilities instead of autistic people with intellectual disabilities.  Very few will actually lose an autism diagnosis.  And once IQ solidifies in the post-early intervention years, any loss of the autism diagnosis will just mean they have intellectual disabilities without autism, which is hardly the same as neurotypicality.

Now, it’s also true that some autistic people with intellectual disabilities have a more obvious genetic etiology of their autism (e.g., Fragile X Syndrome or something) than most autistic people without intellectual disabilities.  It’s possible that we’ll eventually gain the ability to intervene on these specific genetic variants in a way that prevents autism.  However, that wouldn’t reverse the effects of prior neurodevelopment and experience.  So even if we solved the serious practical problems that are stopping us from messing with people’s genes today, I’m not sure these treatments would offer a “cure” per se.

References

Barbeau, E. B., Soulières, I., Dawson, M., Zeffiro, T. A., & Mottron, L. (2013). The level and nature of autistic intelligence III: Inspection time. Journal of Abnormal Psychology, 122(1), 295–301. https://doi.org/10.1037/a0029984

Barnevik Olsson, M., Westerlund, J., Lundström, S., Giacobini, M., Fernell, E., & Gillberg, C. (2015). “Recovery” from the diagnosis of autism – and then? Neuropsychiatric Disease and Treatment, 11, 999–1005. https://doi.org/10.2147/ndt.s78707

Dawson, M., Soulières, I., Gernsbacher, M. A., & Mottron, L. (2007). The level and nature of autistic intelligence. Psychological Science, 18(8), 657–62. https://doi.org/10.1111/j.1467-9280.2007.01954.x

Eigsti, I. M., Stevens, M. C., Schultz, R. T., Barton, M., Kelley, E., Naigles, L., … Fein, D. A. (2016). Language comprehension and brain function in individuals with an optimal outcome from autism. NeuroImage: Clinical, 10, 182–191. https://doi.org/10.1016/j.nicl.2015.11.014

Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., & Mandy, W. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5

Lai, M. C., Lombardo, M. V., Ruigrok, A. N. V., Chakrabarti, B., Auyeung, B., Szatmari, P., … Baron-Cohen, S. (2017). Quantifying and exploring camouflaging in men and women with autism. Autism, 21(6), 690–702. https://doi.org/10.1177/1362361316671012