Precisely Imprecise: The Problem With ‘Profound’
The longstanding tension between members of the autism research community and members of the autistic community has been increasingly public over the past few years, with media coverage extending far beyond researcher and self-advocate circles. The framing of the conversation around the term “profound autism” in particular has become contentious enough to draw the notice of the lay public, and the scrutiny has served only to amplify the voices whose connections and power meant they were already being heard while simultaneously dampening the attempts to create a basis for understanding and meaningful action.
I don’t believe it would be helpful for me to point out the contrast in connections, power, money, and time between advocates for and against the creation and use of a “profound autism” category. It is there to observe, of course, and could be useful when a layperson might wonder why this particular concept has vaulted into the public consciousness with such alacrity.
But when it comes to looking for common ground between groups with legitimate concerns and genuine emotional stakes in the question of how best to serve autistic people via scientific research, I believe the more helpful starting point is to look at what everyone already agrees upon.
Research funding does not match the needs and priorities of autistic people from any demographic.
Advocates for the term “profound autism” argue that this problem that lays at the heart of autism research necessitates a way to separate out the autistic people “with distinctive talents and abilities” from those who “need help with tasks of daily living,” per this explainer article by Caroline Miller from the Child Mind Institute. The article, which extensively quotes the Autism Science Foundation’s co-founder and president Alison Singer, is framed as an objective overview of the meaning and background of the term.
Like other coverage of the issue from autism-focused news organisations like Spectrum, it neatly and uncritically summarises the arguments in favour of the term’s use - even in a section at the end with the heading “Opposition from the neurodiversity community” which includes a single quote from the Autism Self-Advocacy Network after noting that “some in the autism community” believe it is “potentially detrimental.” The remainder of the article returns to the perspective of Singer and those who share her view, but crucially fail to engage with the question of why opposition to the term exists.
Singer, for her part, is quoted directly after ASAN’s comment as saying “The term profound is not meant to demean anyone or to label anyone as a lost cause,” implying that the opposition to the term is all about hurt feelings on the part of autistic self-advocates and anyone else who believes the term should not be used. It’s a neat rhetorical trick on the part of the writer, and has been used again and again within this debate.
In her own article on the term in Spectrum from November 2022, Singer implies that those who oppose the term “profound autism” are “triggered by reasonable terminology” and want to deprive scientists of a “full semantic toolbox to describe what is happening in the real world.” Advocates of the term, it seems, want laypeople to draw the conclusion that the term “profound autism” is the perfect tool to inhabit that semantic toolbox, if only pesky autistic self-advocates could stop being offended for a minute and get out of their way.
It’s easy to frame a debate to make yourself look reasonable and your opponent look unhinged when you refuse to engage with the substance of an argument. It’s even simpler to do that when those who are arguing against you have a few significant naturally occurring challenges that make them less likely to be taken seriously as experts. And it’s unhelpful to solving the actual problem at hand, which is, as all of us agree, the fact that research funding does not match the needs and priorities of autistic people from any demographic.
So let’s consider the question of a semantic toolbox for researchers. Let’s think about the way researchers use language in categorising and understanding autism, and think about how a semantic tool like “profound autism” may or may not fit those needs. Let’s take the argument only at its face value, and address it in a way that other articles explaining the debate have largely failed to do.
What is the actual problem with “profound autism” as a semantic tool? Is it truly just that some autistic people find it offensive and demeaning? Is it true that “profound autism” carries a utility to scientists as a way to describe, per Singer, “the scientific and practical realities of autism” in a way that no other alternatives can match or exceed?
As a reminder, according to Miller’s explainer article referenced earlier, proponents of the term define “profound autism” as “...having an IQ of less than 50 or being nonverbal or minimally verbal. Kids with profound autism need help with tasks of daily living, such as dressing, bathing, and preparing meals. They are also likely to have medical issues like epilepsy and behaviors like self-injury and aggression that interfere with safety and well-being. They require round-the-clock support, throughout their lives, to be safe.”
To have the category of “profound autism” be useful as a scientific category, we would assume that people who fit this category would broadly share the vast majority these traits and that those traits would be explained by autism rather than something else, and that autistic people who are not in the “profound autism” category would not share the vast majority of those traits despite their autism.
Yet, autism as a diagnosis, with or without the inclusion of functioning labels, is still a big question mark, scientifically speaking. Part of why so much research funding is spent on what researchers call “basic science” - neuroimaging, genetics, prenatal development, and any factors that influence the likelihood of a person having autistic traits - is that the core diagnostic traits of autism can come from so many different combinations of all of these factors, and these traits can be expressed in so many different ways among autistic people within the same diagnostic pathway or even within the same family. Not only do we not know what causes autism, we are still figuring out all the myriad pathways through which the diagnostic criteria for autism can emerge.
Rare genetic conditions provide just one useful example of this phenomenon. More than 150 rare genetic conditions have been identified for which autism is a likely co-occurring condition. Even within these conditions, individual needs and outcomes can and do vary widely. Fragile X Syndrome, relatively common within the world of rare genetic disorders, affects 1 in 4000 males and 1 in 8000 females and frequently includes a co-occurring autism diagnosis. Individuals with Fragile X have a wide range of characteristics that occur with varying degrees of frequency and lead to a similarly wide range of developmental trajectories, from showing no apparent signs of the condition through severe intellectual disabilities that necessitate lifelong care needs.
A label of “profound autism” would fit a portion of people with Fragile X through their whole life, and would never fit another percentage of that group. There would also be a group of people for whom “profound autism” might fit, depending on a number of factors that influence the abilities a person develops over the course of their life. Whether the label applies would also, of course, depend on the impressions of the diagnostician applying the label, and the context in which they were making the diagnosis.
Would it be appropriate to group autistic people with Fragile X together to further investigate the origins, trajectories, medical interventions, and structural supports based on the underlying genetic condition they all share, whether or not their autism would qualify in the minds of some as “profound”? Or would it be more appropriate to group some with Fragile X alongside those who researchers would deem to have “idiopathic autism” without one easily defined cause, and still others whose autism comes from a completely unrelated genetic condition, simply because their autism is deemed to be “profound” enough to fit this category? If the latter, where do the people with a Fragile X diagnosis whose autism does not always meet the “profound” threshold fit in? Is their Fragile X diagnosis no longer relevant to scientific interest simply because their IQ is 75, rather than 50?
The uncomfortable truth that proponents of the term “profound autism” tend to avoid sitting with is that the example of Fragile X described above is not the exception: it is the norm in autism, even among those for whom a diagnosis of “profound autism” might apply. It is absolutely, undoubtedly true that there are autistic people whose future will hold minimal communication and round-the-clock care. It is also undoubtedly true that there are people who share the diagnosis of autism who will never face those challenges in any significant way.
An ancient well in a forest in Fife, Scotland. Carved from rock, it looks far deeper than it really is.
The fact is, though, that the estimates of how many fall into which category vary so significantly and have changed so much over the years because the number of us - yes, us - in the middle are so vast. As the number of people diagnosed has grown, and the demographics have shifted, as we have increased our understanding of how autism looks depending on all the varying factors that go into shaping the way autistic people interact with the world, that nebulous middle has grown.
What proponents of the term “profound autism” don’t tend to acknowledge - whether because they don’t want to, or because it is extremely challenging to conceptualise without having the lived experience of it - is that most autistic people experience wild shifts in the amount of support they need throughout their lives. Autistic children who are “minimally verbal” and “need help with the basic tasks of daily living” can, and frequently do, grow into adults who live independently and communicate in a way that meets their own needs and goals. Autistic adults who were precocious in their verbal skills as children can, and frequently do, experience debilitating loss of skills through distressingly common experiences like C-PTSD or autistic burnout that lead to an inability to hold a job or communicate meaningfully.
When autistic people object to the term “profound autism” it is not because it is “demeaning” - calling someone profoundly autistic would only be demeaning if you accepted that calling someone autistic is demeaning. The idea that it is offensive to be called autistic is the very definition of the stigma that leads to trauma, stress, burnout, unemployment and underemployment, inadequate education, vulnerability, and lower life expectancy.
Autism is not shameful. It isn’t a moral failing.
Framing the major argument in the “profound autism” debate as one of cancellation due to offensive language is a gross mischaracterisation that feeds into the unhelpful narrative that says that autistic self-advocates don’t want any autism research happening. This narrative adds fuel to the fire of mistrust that already exists among stakeholders in autism research.
It should not be controversial to say that the goal of any researcher should be to reflect the reality of whatever it is they are researching. “Profoundly autistic” when used as a diagnostic subcategory is simultaneously overcomplicating the usefully broad category of autism and while oversimplifying the usefully specific subcategories of intellectual disability, non or minimally speaking, communication delays, motor delays, epilepsy, and so on.
Even the two most basic elements in the term’s definition, intellectual disability and being nonverbal/minimally verbal, do not necessarily connect with each other in any meaningful sense. There are well-publicised examples of nonspeaking autistic people who use communication supports like AAC in the course of independent lives in which they set and achieve meaningful goals. Though these people and others like them would fall under the label of “profoundly autistic” their needs and experiences would differ significantly from speaking autistic people with co-occurring intellectual disability.
It is my hope, when speaking to researchers in the course of my work, that I can work from the assumption that even if we disagree profoundly about what needs to be researched, we can at least agree that research should be done with the goal of accurately describing reality. It is ironic that by insisting researchers use a “semantic tool” that adds an artificial division solely to make parents of some autistic people feel seen, promoters of the term are doing the very thing they accuse others of doing: ignoring the reality of autism.
The argument, alluded to only once in the article from Child Mind Institute, that alternatives to the “profound autism” label such as support need descriptors or grouping by co-occurring conditions are inadequate because they haven’t been adopted consistently in clinical practice, is symptomatic of the desire to make the lives of autistic people more palatable and comprehensible to non-autistic members of the broader autism community. If the only thing stopping scientists from adopting something useful, relevant, and accurate is how much other scientists are using it – why on earth would the solution be to add in a new, less relevant, less accurate, less useful label?
This is not a solution. This does nothing but create more vitriol - something all of us need even less than a precisely imprecise label like “profound autism”.