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The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

Review: Sensory Trauma: autism, sensory difference and the daily experience of fear

Autistic people use their bodies, sounds and words to declare that their sensory experience is different to that of non-autistic people.

So begins the introduction to the recently-published article, “Sensory Trauma: Autism, sensory difference, and the daily experience of fear” (2020), from Fulton, Reardon, Richardson, and Jones, researchers from Autism Wellbeing Press.

When I read these deceptively simple words for the first time, I skipped right over them, eager to get to the meat and potatoes of the work. In reality, the profundity of how succint this summation of this paper was went by me at first, only arriving later on my third or fourth reading as reviewer.

I wondered for a moment why that was so? Did I really feel that the statement was so self evidently true that it barely warranted pointed observation? Did it feel obvious to me that this was simply a thing that was known to everyone?

If you, like me, felt the truth of this premise in your bones on first hearing, so much so you happily stepped out onto the platform of ideas the team from Autism Wellbeing was building, it is possible you may be autistic.

I’m not going to bore you with a list of diagnostic criteria at this point and encourage you to see your doctor if you believe this might be true for you because the point of this article is not autism awareness, it is about Autism acceptance.
I, like the writers of this piece, are not asking you to take note of autistic people in the world or autism in yourself.

They are asking you to accept the idea that at their core, autistic people are living in a world of experience that not everyone in the world experiences with them, and that everything they do or say would make sense if, for a moment, others stood in their shoes.

It is a very bold premise, one I have tried for years to convey to people through my work as a social advocate in autistic communities. When I, feeling at times like a voice crying in the wilderness, tried to explain this concept to people the initial response was typically one of pure dismissal and incredulity.

There is a common piece of advice that flows through many cultures once touched by Christian missionaries: Do unto others as you would have done to yourself.

What few of these well meaning warriors of Christ had ever paused to contemplate was that others might not wish to have done what you would wish for, and that this adage, taken to it’s conclusion, has always been one with the potential for causing catastrophic harm.

In Sensory Trauma: autism, sensory difference, and the daily experience of fear (hereinafter, Sensory Trauma), these harms are carefully laid out for those well-intentioned missionaries from the medical profession and other neurotypically-oriented interest groups still too hell bent (even after a decade of Autistic self advocacy against this approach) to “do unto others.”

I have rarely seen anything like this spoken of outside of closed Autistic self advocacy groups. There just never seemed to be a way to express these concepts clearly to people who don’t experience them.

Yet somehow, these gifted scholars have put these concepts into clear, fairly simple language for all to understand.

There is a perception that autistic people cannot tell their own story about their experience. Yet when the writing of autistic people is compared with how they are spoken of by professionals the differences are easy to observe.

Autistic people, when they recount their sensory experience of the world, use language quite different to that used by autism professionals. Sensory writing by autistic people is, of its nature, self-referential. It may be nuanced and reflective as well as, at times, graphic, shocking and replete with sensory detail.

I suggest that in this the obvious becomes clear: They are speaking from experience, and those experiences are neurodivergent. How the allistic researchers that speak about autistic people understand Autistic minds is not how those minds experience themselves.

In neurocentric sensory writing, autistic sensory experience tends to be cast in the scientific language of sensory processing. Examples of such terminology include sensory processing disorder, abnormal sensory response, sensory dysfunction, sensory sensitivity and unusual sensory behaviours.

And later, the authors reinforce the medical neglect that will be inherent in a paradigm wherein autistic sensory systems are assumed to be the same as non-autistics’.

Drawing attention to the normative stance of neurocentric sensory writing is not to deny that autistic people may have difficult sensory experiences, nor to contest a neurological explanation for such difficulties. Rather, we highlight the way in which autism professionals tend to assume that the sense systems of autistic people operate in the same way as their own.

This really expressed well for me one of the central issues with mainstream autism research: How consistently, the language of pathology is invoked even as we are learning that this is a mistaken and bigoted view of autism, and really mental states in general.

Mental health practitioners have of late been going through a quiet revolution. As new advances in neuroscience unravel millennia old taboos and stigmas, we are living in a bold new age of enlightenment that many have begun to nickname “The Embodiment revolution.”

As a long-time supporter of another cognitive revolutionary movement, The neurodiversity paradigm, I found this progress encouraging.
Given that none of us are telepathic, you would think the idea that we cannot know fully how others experience reality would be almost too obvious to be a new thought, and yet this appears to be a pervasive belief amongst neurotypicals that seems to be rooted so deeply that few ever question it’s validity.

This belief, that we all more or less experience the world in a similar way when we are gathered together in a space, seems to drive a lot of misunderstandings between autistics and non-autistics.

There’s is a powerful push, I think perhaps founded in a deep seated fear of the embrace of subjectivism, that drives neurotypicals to argue with me, sometimes for hours, that there is but one experience of the world that is true, and my behavior is rooted in my willful ignoring or rejection of this shared reality.

This research takes a felling axe to this notion.

In a detailed and careful analysis of the writing of autistic people versus academic works by neurotypical researchers, it lays open the neurotypical bias of modern autism research while offering a compelling proposal for making sense of the difference in perception between autistic people and those who study them. It’s apt and sensitively designed analogies capture with great depth and nuance the subjective experiences of autistic people that typically evade observation.

In place of the flawed notion of commonality of objective experience, they instead draw our attention to the idea of affordances. The depth of the way that neurodiversity impacts on our subjective sense of lived experience and how it can offer a clear explanation of the reason why two different people experience one moment or space in such diverse and often incompatible ways is beautifully expressed by this term.

This is how affordances are explained in the paper:

Affordances are the opportunities for perception and action offered by the environment to an individual in relation to their characteristics and capacities.

They expand further (paragraph breaks added for accessibility):

Affordances are neither in the environment nor in the perceiver but instead derive from the relationship between perceiver (individual) and what is perceived (environment).

Affordances may be experienced by the perceiver as positive or negative, they are not inferred or deduced, but are perceived directly and derive from the interaction of the individual and environment.

The perceiver does not perceive or act upon every affordance in their environment, rather, the perception of affordances depends on the particular information in the environment that is picked up by the perceiver.

In turn, information pick-up depends on the characteristics and capacities of the perceiver (eg., perceptual capacity, state of arousal, motor skills, affect) and the nature of the interaction between the perceiver and the environment. From this, it follows that an affordance derives from the interaction between a particular perceiver and their environment. The affordances that an environment offers to one individual may be quite different from the affordances that the same environment offers to another individual.

The concept of affordances neatly examines the likely origins of the prejudices found in a lot of autism research by exposing the constructs that underpin such beliefs, namely the indexing of the experience of the autistic body-mind against a putative norm engineered for and by non-autistic body-minds.

With this, the Fulton, et al., draw attention to the neurotypicality of the research practices of mainstream autism research and openly raise questions in mind about the value of research which includes no input from actually autistic sources.

This is not news to those experts deeply and widely read in the field of neuroscience and autism. Such established names as Tony Atwood have been throwing his support behind including autistic voices into research. Yet I have seen very little of this make an impact on the world of autism treatment. I was so thrilled to find this paper noting this issue also.

I have been a psych inpatient and outpatient for such a significant part of my adult life that it creates an awkward blank on my resume. My path to recovery has been complex. Apart from the support of the neurodiversity movement, some scholars offered a way forward which has helped me unravel some of the puzzles of how to be well again.

Thinkers like Drs. Brene Brown, Bessel van der Kolk, Stephen Porges, Gabor Mate, as well as Professor David Eagleman and renowned spiritual guide Thomas Hubl have all had profound impacts on how I understood my own brain and the human condition, and they all share a fascination with the specifics of why humans feel and think as they do.

Before their work reached me, I was in a place of despair. Mainstream psychiatry had wholly failed to support me, and I was at a loss… until I grew more familiar with their methodologies and ideas. A big part of my healing involved understanding the traumas unique to the lived experience of autistic people.

Stephen Porges in particular has spoken extensively in recent years about the importance of recognizing the impact of the polyvagal theory on our understanding of Autistic people (Polyvagal Theory and Regulating our Bodily State | Affect Autism) and numerous practitioners in the field of mental health are sharing concerns about the prevalence and mismanagement of trauma.

It is critically important for this knowledge to be propagated to the average practitioner and people in autistic communities who still appear to know nothing about autistic trauma.

I believe “Sensory Trauma” will present another such shift in understanding of human consciousness for those seeking a more enlightened path to mental health. The concept of sensory trauma was one of the missing pieces of the puzzle of the human condition.

This research in sensory trauma expresses in clear, clinical terms the various ways that the differences in autistic sensory experiences can lead to inadvertent traumatisation by loved ones and society in general, even when they act with the best of intentions. “Sensory Trauma” reveals with sensitivity a path forward for us to speak about the lived reality of sensory trauma that so many autistics experience even without having a name for their suffering.

This qualitative exploration helps us understand how a community of parents and professionals all claiming to be focused on the wellbeing of autistics have come to be at such a divide from autistic advocates themselves, delicately unfolding one of the core phenomenological aspects of the autistic experience that has been hidden in plain sight for so many years.

By binding together the work of embodiment leaders like Porges with the conclusions drawn from thorough qualitative analysis of autistic sensory writing, they reveal that which for autistics may be as water to a fish, but for allistics may have been the missing puzzle piece (forgive the awful analogy) they kept failing to find where their understanding and acceptance of autistic people was concerned: They lacked the necessary insight into the autistic bodymind to understand how our behaviours were related to our very real lived experiences. These differences were frequently not at all an expression of pathology but of adaptations to sensory traumas.

I highly recommend anyone who works in the field to give this paper not just one but several thoughtful read-throughs, and share this work widely with their colleagues. It might just spark a small revolution.

I believe the authors of the paper, Dr. R Fulton, Dr. E Reardon, K. Richardson, and Dr. R. Jones should be included when we speak of leaders in the field of autistic research. To me they are forging a new marriage between the work of the Neurodiversity paradigm and that of the professionals directing The Embodiment revolution and there are only good things to come of their inquiry.

This work is available for purchase on Amazon and can be purchased by clicking here.

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3 Responses

  1. hello.
    i read your very importent review.
    may i translate it to hebrew & share it? [while linking to your OG post, of course]
    i am one of the managers of a facebook page for&by autistic womxn [in hebrew] called “מרוצפות – אוטיסטיות כותבות”

    would love 2 hear from you.
    thank you!
    – specty

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