I-RAP
Improving Recognition and Understanding of Autism and Personality Disorder
Blog
**Note: As an autistic person who identifies as neurodivergent, neuroqueer with a diagnosis of ASD, I understand the importance of autistic-community aligned language. I use the term autism spectrum disorder in a discussion of the diagnostic construct, not because I believe that is the right way to describe people who are known and identified as autistic.
As someone subject to mental health services in the United Kingdom, receiving first a diagnosis of autism spectrum disorder (ASD) followed by emotionally unstable personality disorder (EUPD) within the same year I understood from the inside the effect that these kinds of labels have on an individual. These extend beyond the impact of such diagnoses on the self, into those created by ineffective or traumatising treatments imposed on the person. Such risks are particularly damaging in situations where the person subject to them is unable to escape, such as when detained under the Mental Health Act.
These experiences spurred me to participate in studies like I-RAP and more recently to begin my PhD examining the experiences of autistic people perceived as female as they navigate the power structures of the mental health care system.
There is an established and ever-growing body of qualitative research undertaken with and by autistic people. It describes the effect that poor or non-existent clinical care, inappropriate treatment and restrictive detention can have on our community.
The I-RAP study, in examining the diagnostic criteria for personality disorders and autism spectrum disorder, is one of the first (certainly that I have encountered) which seeks to extend this knowledge into day-to-day clinical psychiatry practice and mental health provision. It does this by critically re-examining the established diagnostic criteria people in distress are assessed against. I-RAP, most crucially, has undertaken this inquiry through the lived experience of autistic people perceived as female who live with psychiatric labels imposed on them and their ways of being and experiencing the world.
Even in the context of this important study, there is still a need to work within the confines of the framework of first-world psychiatry. Inside this, people have historically been identified as “disordered, mad, pathologised or ill” by comparing them to socio-cultural standards of what ‘normal’ is. These standards of normality typically relate to ideals held as best by the dominant social groups of recent decades and centuries - those of maleness, whiteness, heterosexuality, neurotypically, monogamy, cis and binary gender. All research and discourse around autism, autistic people, neurodivergence and neuro-disorder are undertaken in these contexts of neuronormativity and psychiatry.
So, I have often wondered about the beyond, past these boundaries.
How would autistic people define themselves, ourselves, had we come to self-knowledge outside of these constraints? What happens if we were to look beyond the current times when these normative standards were held as paramount?
This exploration led me to the cave paintings at Chauvet in France which demonstrate a new development in human artistic ability around the time of the major ice ages in Europe. These magnificent, photorealistic depictions were vastly more sophisticated than previous simpler examples of prehistoric art known before the Chauvet caves were rediscovered.
Figure 1: Detailed illustrations of Lions Panel (center left), runaway rhinos (multiplied horn) painted in the Pont d'Arc cave (copy of the Chauvet Cave). Wikimedia Commons
Researchers from the University of York [1] investigating the emergence of these abilities aligned this new development in human culture and expression with a cluster of other traits that emerged simultaneously.
Those of being able to focus intensely on one thing (when making complex flint tools); highly specialised spatial and memory abilities (required to navigate larger swathes of terrain to hunt for food because of higher scarcity and which have fewer landmarks available through greater snow cover) [2, 3]. Perhaps even the ability to enjoy and even prefer one’s own company more without becoming depressed or distressed (because of longer darker nights and poorer weather making going outside of your shelter risky and uncomfortable).
Do these clusters of attributes sound familiar when compared to the qualities of autistic people, or even the diagnostic criteria for ASD? These researchers reached the same conclusion.
They examined contemporary populations and identified autistic people as the closest fit in our abilities to these new iterations of humanity that prevailed about thirty thousand years ago when the last ice age period descended rapidly.
Similar has been discovered for traits held by ADHD people (and by which their pathology is diagnosed), who, in the context of hunter-gatherer communities, were those in the group who had the impulsivity and spontaneity to ‘see’ valuable food sources like large mammals; valuable scarce and dangerous to secure [4]. They were the ones who had little regard for the risk, grabbed their spears and got the meat whilst their peers may have debated the best way or even been reluctant because of fear. Contemporary ethnographic research identifies that in human communities which still hunt and gather, these adaptive and unhesitating qualities are highly valued [5].
So, to make this point as literally as I can, it seems autistic, ADHD and neurodivergent traits developed as a result of natural selection. They gave the humans (and the communities they lived in) an evolutionary advantage under very specific conditions. The ancestors of people now labelled with neurodevelopmental disorders may have been instrumental in ensuring the survival of our species. This is a pretty big deal.
Thus, current scientists, artists and everyday people can appreciate very vividly the contributions an autistic (ADHD or neurodivergent) version of humanity made for the benefit and advancement of all of humankind.
They just can’t connect the dots with these realities and the presence of similar folks like me today.
As an autistic person, I reflect on this with sadness. Today, people with autistic characteristics are widely considered disabled, lacking and often less than human. Being autistic (or diagnosed with ASD, ADHD or any mental health diagnosis) is negatively stereotyped, stigmatised and regarded as a social burden. This is because of the cost associated with supporting people who are disabled by living in a world which rejects us and our ways of being and knowing. This is not our fault though; it is a fact of the time and place of our birth.
By contrast, thirty thousand years ago we may have been revered as mystics, artisans or leader clan hunters if current research is correct. The evidence available suggests this was the case.
If perceptions of pathology and impairment compared to value and contribution can swing so wildly depending on their social or environmental context, can these specialised attributes become useful again?
If we can, we might just be able to peep momentarily beyond the collective truth that we hold about the right ways to think, feel, behave or be. We can all look into times in the distant past or future when these differences were assets, not impairments.
Contributing to the I-RAP study opened up such a space and a place to reflect upon this state of being, both in my own life and more widely in our society. It has caused me to think about the treatment and labels I have received as an autistic individual living with extreme experiences which can be beautiful, terrifying or inexplicable (just like the times we all inhabit today). It has provided an opportunity to share and hear those of other participants, both autistic and non-autistic. I, we, have experienced a plethora of emotions, both collectively and individually whether working from a place of academic practice, clinical practice or lived experience.
This and other work I have been and am involved in, lead me to conclude that psychiatric labels and the power invested in those who enforce them must be considered with care and regard for the impact they can have.
I-RAP and similar affirming research enable autistic people and those with diverse and atypical mental experiences to gain a greater sense of who we/I am/are. We gain a sense that there are others like me/us and that there is beauty and reason in my/our differences that have the potential to make a difference in my/our world.
I hope, at some point, this will be recognised as universally as the cave paintings in Chauvet are today.