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ADHD; The Road Less Travelled. by Ros Twitter: @doraadorna

1.

At the ripe age of 34, following a cognitive assessment for work, I was diagnosed with a Specific Learning Disability of the ADD variety (for brevity, in this piece I use the term “ADD” to refer to both “ADD” and “ADHD”). While I am still waiting for an NHS diagnosis—my area currently has a twenty-five-month waiting list and unsurprisingly —I have failed to finish my PhD within my 3-year funding period, so I’m not in a position to fund a private assessment. NHS diagnosis or not, I believe the occupational psychologist who assessed me. She could not have been clearer: I have ADD.

Faced with a multiple-year waiting list, a half-written thesis, and a pandemic, I did what any ADDer with access to the Internet and research training would do. I read approximately 95 bajillion papers on ADD and dedicated all of my “limited” – or, as this piece suggests, “different” - social skills to engaging with neurodiverse Twitter. Excitingly, my light –up, pinball machine of a brain decided to cross-reference all of the information I inhaled about sensory differences, neurological idiosyncrasies, and social communication quirks with ricocheting shiny steel balls of - dear lord, I want to bite my arm off with shame – memories of my failures over three decades of friendships and relationships.

At the beginning, I was buoyed by this new perspective, believing that with my new trove of ADD information, I had built myself a pinball course to guide my whizzy neural-firing and that subsequently, I could stop shooting myself on the inside of my brain. It transpires, though, that medical literature has a proclivity for framing ADD experiences as deviant from the norm rather than as a difference in experience. And so, with more and more information following a lifetime of undiagnosed ADD, that little ball that is my attention hits bigger, better and brighter targets.

I have remembered so many social and romantic faux pas since mid-June, I considered writing a book called “Things I have done to disturb, upset and alienate people: The tale of an undiagnosed ADDer.” Looking at the unfinished PhD chapters scattered all over my desktop, however, I cringe with the genuine sadness for what I’ve caused myself and others with my absolute misunderstanding of typical social etiquette. Turning these mishaps into a series of hilarious stories, I realised, was neither functionally possible nor ethically sagacious for me.

There is, however, something I can do with a clear conscience. I’m a researcher who specialises in philosophical understandings of the interpretation and influence of the material world on emotions and experiences. In the period following my diagnosis I realised that my attraction to certain philosophical understandings about how humans relate to our environment has been shaped by my own neurodiverse understanding of sensory phenomena.

I know in my sinews that the way roads are constructed, the materials used for buildings, and even the colours of crops affect how people experience themselves. I know this because of the way my brain blinks in and out under fluorescent-tube lighting; the way that too many conversations happening around me at once makes me want to explode into particles; and in how, when standing in a busy street, I can feel time stop as all the colours and signals and smells and signs constellate, congealing into something more than the sum of their parts.

Following my ADD deep dive, I know that this is not a typical experience of the world. It is a by-product of unique sensory sensitivities and processing differences associated with neurodivergence. I’m in the process learning how to value these phenomena without fetishizing them and to understand the opportunities that they present me with, whilst recognising the difficulties of living in and with this particular mode of existence. Due to the specific orientation of my brain to the sensory world, rather than seeing what I’m looking for in the landscape (what is known as a top down cognitive process), the whole thing shouts at me simultaneously (what is known as a bottom up cognitive approach). It is this symphony of sensory data that means something to me.

I am, therefore, easily overwhelmed by things that many people never notice, meaning I feel things that are generally taken as given in the world. My divergent perspective grants me exciting opportunities to explore the world in unusual ways. I would like to interrogate and build a language around what this means for us as a community of ADD individuals. And, whilst there is no one, singular “ADD sensory experience,” I believe that the creation of a shared understanding of the kinds of differences present in ADD sensory worlds could help us build a sense of having something unique to contribute. I would like to interrogate and build a language around what this means for us as a community of ADD individuals. And, whilst there is no one “ADD sensory experience” I believe that the creation of a shared understanding of the kinds of differences present in ADD sensory worlds could help us build a sense of having something unique to contribute.

This is something important not just for ourselves, but also for the next generation of ADDers. I look at the work of Pina and Dani Donovan, who express the inner worlds of ADD in exciting and novel ways, as well as the work of Ross, Marie and Evy on the ADHD Hub, which brings people together in extraordinary ways, and I know that there is something particular that ADD offers with regards to a perceptual orientation and creative expression.

These sensory differences are at least in part a result of the “elevated noise” that comes about because of the diaphanous quality of the divisions between the cognitive and sensory areas of our ADD brains. I would like to be clear now, that whilst I call here for further development of our understanding of specific and particular qualities of the ADD experience, I am not advocating for ADD to be reformulated as some kind of “superpower”. The claim that this is the case is offensive. I personally find it not only reductive and plain untrue, but creepily infantilising. Despite this I have found myself overwhelmed and upset by the normativity present in even the most supportive of psychological and medical literature concerning ADD. Living better as an ADD individual is, I believe, about more than understanding what is wrong with me and creating strategies to deal with those deficits. There is bigger potential than that in this divergent nervous system. This is why I’ve found neurodiverse Twitter and the conversations with other ADDers on the ADHD Hub so important over these last few months.

The discourse around the emergent language of these community-led explorations of the ADD experience are in part the provocation behind this blog post. I reference here instances like the recent debate around the term “object permanence” as an element of sensory experience which is both atypical to the wider population but shared by people within the ADD community.

I have been concerned regarding the dismissal of terms such as “object permanence” due to a lack of coherence with medical diagnostic criteria. Whilst I support the individuals who expressed apprehension regarding the fate of ADDers attempting to use terms like this coined by the community, in medical settings it also occurs to me that the task of creating language for and around ADD is about more than presentation in clinical settings. To bring forth a new vocabulary not just about but through the divergent nature of our sensory worlds—the alchemy that our atypical nervous systems perform in conjunction with material environments—is not just a form of advocacy for our community, but also a contribution to understanding what it is to be human.

This is the work of the cultural critic, and for this we need to prioritise developing an understanding within our community of the relationship between research regarding the specificities of ADD, the lived experiences of ADDers themselves and a philosophical understanding of the logic in which these taxonomies of experience are grounded. It is through this process that we will learn to ask newer, better questions and to reformulate understandings of what it means to be human in a manner which could have positive implications for other underrepresented and disadvantaged communities.

This blog post aims to explore the “quirks” in our neurodivergent sensory experiences and how we are perceived, the manners in which we experience ourselves and the way in which differing understandings of sensory lives can (de)limit our creative powers. It also aims to act as a point of provocation for an ADD philosophy reading group.

This short-term goal relates to a longer-term hope of kickstarting a culture of self-produced literature that frames ADD experiences as a mode of being, rather than as a cluster of symptoms.

2.

People with ADD are said to have “poor communication skills” with reported issues such as limited insight into others’ perceptions, poor eye contact, inappropriate responses to questions, going off on tangents and dominating conversations. If you’re familiar with the wider neurodiverse literature, you’ll know that these are very similar issues to ones that Autistic people are said to have in social communication. However, studies show something interesting: these communication challenges only seem to affect Autistic people when they communicate with non-Autistic people, but they do not present as deficits when Autistic people communicate with each other. In other words, without a normative idea of what communication is, Autistic people communicate just fine, in their own way.

Another thing that we ADD folk have in common with Autistic people is non-typical sensory processing. Studies have found significant differences between ADD and control groups in auditory, visual, touch and oral processing. We have what is referred to as “elevated noise” in the signals between our sensory and cognitive regions, which is taken by many researchers as evidence of “ineffective” neural pathways that results in “erratic messages”. For example, ADDers have been found to have atypical neurological structure and behaviour in areas of the brain associated with: the regulation and mediation of sensory data, emotional processes and memory, and emotion regulation and reward representations. This appears to be at least in part underpinned by differences in the relationships between areas of the brain that deal with spatial and sensory input and those that deal with decision making, risk assessment and emotional response.

The reason that this is significant is that if our sensory worlds are different, the information that we receive from the world, the way we process it and communicate it to others will inevitably be altered. I was trying to explain to a friend recently that being neurodiverse is like heading to the same destination as everyone else – for example, a conversation or a task– but I have to undertake a completely different journey to get there.

Neurotypical people head straight along the bypass in an air-conditioned Mercedes listening to a self-curated playlist. With little to see on the way to shake their conviction of the world being exactly as they think it is, they arrive on time and with the information to act swiftly in accordance with the parameters required by the task.

I on the other hand, am sent along the country lanes in a suspension-lite buggy that makes sure my body experiences every bump on the road. My route takes me through little villages holding their annual scarecrow festival whilst the local radio station blasts out 80’s power rock and local news. I arrive late, sweaty, stressed and with a lot of extra information about where we are than other people generally have. I have a lot to say and often that information is important, but it gets lost in my tardiness, my subsequent anxiety and my inability to prioritise which bits of information were most important because I can’t separate any of it from its dreamy gestalt.

3.

I would like to put forward that some of the most interesting conversations regarding ways of discussing differences in experiential worlds is currently happening in the environmental humanities, which aim to understand how ideas about so called “non-humans” have developed through politics, arts and philosophy. I believe we could make use of this work to inform our own critical practice. The situation regarding “deficits” in perceptual and organisational information and communication, then, shifts from being a problem to an opportunity if normative assumptions regarding these behaviours are challenged. My initial instinct was to engage with critical disability studies; however, I found issue with the definition of agency within this body of literature. Agency for CDS is seen in and through what is referred to as rational decision-making. These issues are rarely discussed in terms of divergent sensory worlds and the multiplicities of “rationalities” which as a result abound.

There is a body of emergent literature that positions itself at the intersection of critical animal and disability studies in order to pose questions regarding the ontological distinction and moral value of human life. It raises issues that as ADDers we will recognise. If to be human is to have a specific form of reason, communication and autonomy from our environment, then cognitive and sensory differences renders us—as well as more-than-human animals—to some extent outside of moral consideration.

The activist scholar Agnes Trzak reflects on issues regarding perceptual worlds and alternative communication in her essay Disability and the Ahuman: A Story about a Dog, a Duck, and the Woman who Cared for Them. This piece raises new and interesting questions for debates concerning adjustments in education and work for ADDers. Trszak engages on an ethical ground with the limits of recognizing and responding to the needs of individuals who live and communicate with divergent sensory and communicative processes.

In a similar vein the philosopher Eva Meijer writes that we need new models for understanding the ways in which all manner of species “want to live their lives, what types of relationships they desire with one another … and how we can and should share the planet that we all live on.” In Meijer’s most recent book When Animals Speak: Toward an Interspecies Democracy, she opens up the definition of language to include non-verbal communication. And whilst her argument that humans should learn to understand what animals are telling us concerns non-human species, I put forward here, that this opens an opportunity for the ADD community. Both Meijer and Trsak question the foundations of ethical practice in the face of divergent sensory and communicative practices. They ask, how do ableist and speciesist norms inextricably impact understanding of atypical needs and wants?

I propose here that it is worthwhile giving consideration to the possibility that ADD ways of being in the world, due to differences in sensory processing, may have key fundamental differences from neurotypical ontologies. Discovering these may initially require letting go of all of our ideas of what “human experience” is in order to recognise and appreciate the unique nuances present here.

For example, like many ADDers, I speak not just with my hands but with my entire body. The manner in which this interacts with what I want to say, how I express it and how I am received has always, in my case, been considered through the lens of neurotypical communication. In order to begin to ask interesting questions about what this means to myself and other ADDers when I communicate would require holding various normative assumptions at arms-length for long enough to see the phenomena in its own light. Trsak proposes that this can be achieved by becoming what she calls “ahuman,” to explore new ways of relating and communicating.

A method of thinking through the ADD communicative and sensory issues from a more-than-human perspective is an inherently political act of (re)claiming divergent notions of agency and rights. This allows work within our community to have the potential to extend theoretical critiques of agency and rights. I propose here that in deconstructing our understanding of ADD we may also aim to shift perspectives of sentience, ethics and political rights and support a whole swathe of more-than-(just)-human actors.

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