Content note: This article discusses suicide.
The term “profound autism” is redundant, misdirected, and obstructive in determining meaningful supports for autistic people with complex disabilities. Yet “profound autism” proponents—largely non-autistic parents and non-autistic autism researchers—remain dismissive of critical analyses from autistic autism researchers and damning public statements by autistic-led organizations.
We spoke with autistic academics Richard Woods, Kathryn Williams, and C.A. Watts about their recently published letter explaining why “profound autism” not only risks bungling the support needs of autistic people with co-occurring conditions through diagnostic overshadowing, but could endanger many autistic lives.
Thinking Person’s Guide to Autism (TPGA): The title of your letter is “Profound Autism”: The Dire Consequences of Diagnostic Overshadowing. We agree that the term “profound autism” is regressive and even dangerous, but before we get into those weeds, can you first explain what “diagnostic overshadowing” means? How does that term different from “co-occurring conditions” in autism?
Woods, Williams, and Watts: Co-occurring conditions are simply the different conditions a person has that may or may not impact each other, but all play a part in a disabled person’s experience. Diagnostic overshadowing is when one experience is attributed to the wrong condition, one which is already diagnosed or suspected. This can mean lines are blurry in our understanding of those conditions and can mean entire conditions go missed, which can result in not getting support for them. For example, someone might be Autistic with co-occurring Ehlers-Danlos Syndrome. Diagnostic overshadowing takes place when clinicians say that an Autistic person’s hypermobility and gastrointestinal distress are due to them being Autistic rather than investigating them for a condition such as Ehlers-Danlos Syndrome.
TPGA: Your paper is a response to Waizbard-Bartov et al (2023), who “argued autism assessments should be broadened into co-occurring difficulties, impairments, and support needs.” What are your general concerns about their positions?
Woods, Williams, and Watts: As we are clear in our paper, the general approach to assessments they are proposing should already be standard practice, such as to rule out alternative explanations. We go on to explain that the socially constructed categories provided by the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) are not designed to be used as they are described by Waizbard-Bartov and colleagues. All categories as described within the DSM-5 lack biomarker evidence and should be considered ‘transiently useful fictions.’ These categories are constructed by various workgroups; these categories are only designed to map onto a narrow aspect of people’s spiky profiles. It is partly why many people attributed with these categories are assigned multiple categories, such as being diagnosed as Autistic and Attention deficit hyperactivity disorder (ADHD).
Additionally, we know that it is common for many people to not fit within the boxes of these categories, so DSM-5 has many residual categories for those meeting threshold for standard categories; for example, ADHD has two residual categories “Other Specified Attention-Deficit/ Hyperactivity Disorder,” and “Unspecified Attention-Deficit/ Hyperactivity Disorder.” Such residual categories are expected to be utilised. DSM-5 acknowledges that the DSM-IV residual category for autism, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), was the most commonly attributed autism subtype. We know that the attribution of categories of people is at least somewhat subjective.
The categories within the DSM-5 are not designed to be lumped together to create arbitrary groups, like “Profound Autism.” As Steven Kapp notes, the DSM-5 autism criteria are not designed to create autism subtypes. There is a clear risk that “Profound Autism” will lead to clinical and research confusion. We are clear in our paper such risks are observed with another proposed autism subtype of “Pathological Demand Avoidance.” Arbitrarily using co-occurring Intellectual Disability and/or Language to attribute someone with “Profound Autism” seems nonsensical. We know that many Autistics attempt suicide, and a recent study suggests such behaviours are not inherently due to them being Autistic. Should we attribute Autistic persons showing an impairment of suicide with “Profound Autism”?
Our concern for broadening the definitions of autism to incorporate co-occurring conditions is that it is no longer an autism definition but a definition of complex disability interactions. By collapsing co-occurring difficulties etc. into one diagnostic label, it is unlikely that support needs will be met. To illustrate this, we ask some hypothetical questions: How much do you know about someone who is solely labelled with “Profound Autism” without needing to make assumptions about what that might mean? How much more do you know about someone who is described as Autistic, non-speaking but who uses Augmentative and Alternative Communication (AAC), has hypermobility and fatigue and is a part-time wheelchair user, and who requires support with emotional regulation? Which of the two is likely to be better supported by those around them based on this information? Who is more likely to receive appropriate medical care for their physical co-occurring conditions?
TPGA: Specifically, you write that “if ‘Profound Autism’ is realised, at best co-occurring conditions and their associated supports will be missed, at worst it will likely contribute towards preventable deaths.” That is terrifying. Can you explain what types of fatal tragedies concern you, and how the “profound autism” label could lead to them?
Woods, Williams, and Watts: We provided one such example in our response, cited from a case study in which an Autistic person’s ALS (amyotrophic lateral sclerosis) was only diagnosed a couple of months before they died, as their symptoms of progressive muscle weakness and associated disability were assumed to be “challenging behaviour” due to being “severely Autistic.”
These sorts of fatal tragedies are deeply concerning because it is common for Autistics to have medical concerns dismissed, which can lead to us dying, e.g., from medical conditions or sepsis from injuries people didn’t investigate because they saw behavioural presentations as “challenging” rather than a message of distress. It is a similar phenomenon to “trans broken arm syndrome” where literal broken bones have been missed because trans people typically have their medical concerns linked back to the fact that they’re trans and on hormone replacement therapy (HRT). When all issues are “just a part of autism,” no one looks deeper and very serious things go unchecked as a result.
We need to contextualise “Profound Autism” in broader discourses, such as the present state of the Autistic population and the effects of such ableist terms. We know that functioning categories do not accurately describe an Autistic person and lead to damaging stereotypes, such as Autistic persons who can be highly functioning in one context being labelled specifically as “high functioning.” Such a stereotype is used to deny Autistic persons receiving suitable support.
Likewise, we know there is a stereotype that autism is predominantly seen in males, and that often a clinician’s bias is a barrier to identifying Autistic females. “Profound Autism” could indicate that persons who are not attributed with it are not “properly Autistic,” and it would likely create additional bias amongst clinicians that will impede some Autistics from receiving medical identification. We know the Autistic population, generally, is not being adequately supported, which is one strong explanation for the atrociously high suicide rates amongst Autistic people. Stereotypes created by “Profound Autism” risk denying suitable support from many Autistic persons, which will predictably result in more Autistic suicides.
TPGA: You mentioned that “often pertinent parts of a person’s spiky profile are missed during [autism] assessments.” Can you explain what a “spiky profile” means, and how following the proposed guidelines for a “profound autism” label could make things harder for autistic people with such profiles?
Woods, Williams, and Watts: We agree with Steven Kapp’s description of spiky profiles in Autistic persons. Spiky profiles are ones in which a person can be very good at some things and have difficulties in others. While this can be descriptive of humans in general, it seems to be more pronounced among neurodivergent people. For instance, the non-speaking Autistic population is a “dynamic and not static group.” There are several documented accounts of non-speaking Autistic people (those more at risk of being labelled “profoundly Autistic”) being assumed as non-verbal, with no or limited understanding of their environment. However, when (eventually) provided with tools which enable them to communicate (such as Augmentative and Alternative Communication or AAC), they have expressed that they have understood everything around them. Their spiky communication profile, in these cases, has been missed and with it, they have been denied appropriate tools and education.
A broader issue here is that we’re less likely to get enrichment in our high-skill areas or support for our low-skill areas because people expect to be able to “average out” our skill level to an overall “competence score,” which leaves our skills being unacknowledged. After all, people think if we need so much help in one area we must need it in all areas, or our needs being ignored because if we’re so competent in these areas, then we should be able to figure it out in others.
TPGA: Do you have other concerns about the label “profound autism,” in keeping with the concerns about its proponents’ conflicts of interest as raised by Dr. Kirsten Bottema-Beutel, or Dr. Steven Kapp’s explanation of profound autism’s “limited scientific validity“?
Woods, Williams, and Watts: Dr Bottema-Beutel’s point about conflicts of interest seems accurate and valid. It is a prominent concern reflected in our letter article, which ends by asking who benefits from “Profound Autism,” especially financially?
We could not directly address in detail within the word count our concerns over the conflict of interests present in their paper. David Amaral, who is a co-author of their paper, also is the chief editor of the journal Autism Research. The journal requires letter submissions to be authorised by the chief editor before submission, which Amaral granted for the submission and for us to go over the typical word limit. To our surprise, Amaral was also the handling editor for the submission and provided feedback for revisions to our original submission. Autism Research is a member of the Committee on Publication Ethics.
Another indicator that something is amiss with “Profound Autism” is that a prominent co-author of Waizbard-Bartov et al (2023), Catherine Lord, is critical of the creation of a “Pathological Demand Avoidance” sub-category of autism, stating that “Part of the issue is that even if PDA represents a real phenomenon, it means different things to different people, and it is unclear how useful the designation.” Yet those issues apply to “Profound Autism,” so we wonder why Catherine Lord is advocating for “Profound Autism.”
An alternative way of framing the issue, one that some would argue, is that autism theory, research, and practice are undergoing a paradigm shift towards social model neurodiversity outlooks. If this paradigm shift occurs, it will revolutionise autism theory, research, and practice. A pertinent example of this, while being mindful of a potential conflict of interest on this as one of the authors is a co-author, is the Monotropism Questionnaire (MQ). Montoropism Theory is a non-pathologising autism theory proposed by Autistic persons. The theory has a large amount of interest amongst of Autistic persons, indicated by over 700+ Autistic participants recruited via snowball sampling to the initial validation study. Lately, a preprint of the MQ accidentally went viral as an autism self-assessment tool, despite the MQ only assessing a version of Monotropism, substantially informed by one Monotropism Model, with one video having almost 3 million views.
The MQ’s initial validation results are exciting when considering the MQ’s potential to be adapted as a tool to identify Autistic persons. The current MQ has a number of subscales which are pertinent to “Profound Autism” and behaviourist-based advocates’ potential futures. Some relevant subscales include “Need for routines,” “Anxiety-reducing effect of special interests,” and “Special interests.” If one looks at the items in those subscales, they include features which intrinsically work with an Autistic person’s autonomy, to allow us to self-regulate. One could potentially work with our passions, to build on the strengths of our spiky profile. However, there is a clear conflict of interest in parts of the autism industry to divide the Autistic population, to minimise and dismiss Autistic advocacy and agency. The MQ and subsequent interest in it directly contradicts deficit-based approaches, which recommend autism treatments such as Applied Behavioural Analysis, and makes it clear that we need to be asking how “Profound Autism” helps to support Autistic persons’ agency, ability to self-regulate or for them to advocate for themselves?
Richard Woods is a PhD student at London South Bank University’s Critical Autism/ Disabilities Studies research group and an active member of the Participatory Autism Research Collective. His PhD is investigating the proposed mental disorder ‘Pathological Demand- Avoidance’ (PDA). His other academic interests include Monotropism theory and Autism and the social model of disability.
Kathryn Williams is an ESRC-funded social policy PhD student researching the role of communication in access to healthcare for autistic adults. Her research interests include healthcare accessibility, the constructions of communicative normalcy, epistemic injustice and compulsory neuronormativity. She is also the research director for Autistic UK CIC, an autistic-led organisation promoting the rights of autistic people in research, policy, and practice.
C.A.Watts is a teacher and scholar in Critical Disability Studies from Wonnarua Country in Australia. They are the only Autistic teacher in the state of New South Wales to offer Neurodivergence training to the education and disability sector.
