This essay is an exploration of how the autistic senses of agency and self are diminished by various mechanisms, and how this diminution leads to the psychological problems of anxiety and panic disorders and PTSD experienced by many in the autistic community.
!What are the senses of agency and self? Can we break them down into constituent parts? As with most of psychology/psychiatry/philosophy concepts, there a number of different theories. I am going to explore these senses through the prism of embodied cognition, more specifically the philosophical theory of enactivism. Enactivism is part of what is known as 4E cognition. The four Es are Embodied (cognition is embodied – not just in the brain), Embedded (in the environment), Enactive (in action) and Extended (cognition can be considered to be extended via e.g. smart phone.) I am not going to include extended cognition as part of this essay.
Enactive cognition has its roots in phenomenology and pragmatism. Probably the most quoted philosopher in the embodied cognition field is Maurice Merleau-Ponty, a contemporary of Sartre. For the purposes of this essay, I am going to give simplified versions of embodied and enactive cognition. I will supply references for those who wish to make further inquiries.
The principal difference between mainstream cognitive science and the enactive account of cognition is that mainstream accounts place cognitive processes solely in the head, whereas the enactive account posits that cognitive processes (particularly perception and action) involve bodily and environmental factors. In other words cognition cannot be relegated to brain processes alone. The philosopher Evan Thompson offers an astute analogy to explain this, neuroscience is “like saying that flight is inside the wings of a bird.” (https://tricycle.org/ magazine/embodied-mind/). The philosopher Shaun Gallagher in his book, Enactivist Interventions writes, “Cognition is not simply a brain event. It emerges from processes distributed across brain–body– environment.” From an autistic perspective this makes sense, we can be discombobulated by the environment; visual, aural and olfactory experiences. Many of us stim, using our bodies to regain homeostasis when overstimulation needs blocking or provokes anxiety or other negative feelings. The enactivist philosophy/psychiatry position is that the brain is part of a circuit, brain-body-environment. It is not an AI algorithm in our head operating the machinery of body and environmental/social interaction.
Exposure to prejudice and stigma is a well documented autistic experience. Discrimination against cognitive identities does not seem to attract the level of academic inquiry as discrimination against cultural and gender identities . This prejudice is so woven in to the fabric of societal discourse (and action), that it is only properly appreciated upon exposure.
The most egregious assaults on autistic senses of agency and self are to be found in the proliferating field of ‘alternative therapies’. MMS (Miracle Mineral Supplement) which contains the toxin Sodium chlorite, and as a mixture produces the toxic chemical chlorine dioxide, is touted as a cure for autism (and HIV, malaria, hepatitis viruses, plus more recently, COVID-19). Despite the long and sterling efforts of some notable campaigners against this treatment – which is undoubtedly a serious form of child abuse – no attempt of note has been made to investigate and prosecute those who supply and administer this treatment. To the autistic community this failure of protection only increases the belief that autistic children are seen as somehow sub- human. To what other group of children would this abuse be tolerated for so long?
It is not just the quacks who demonstrate a disregard for autistic human life, prenatal genetic tests are now available – and one assumes abortions are carried out – even though the evidence is far from conclusive. I am not anti-abortion, but the knowledge that a form of eugenics is targeting possible and potential members of one’s cognitive identity is obviously perturbing.
Study after study has concluded that ABA (Applied Behaviour Analysis) can – and does – result in harm for a large number of those subjected to it (Kupferstein, 2018), (Aileen Herlinda Sandoval-Norton, et al 2019), (Wilkenfield, McCarthy, 2020), (Milton, 2018)
The neurodiversity movement has for many years campaigned against the behavioural psychology theory behind this ‘therapy’. Betraying its business model underpinnings, the practice responded with a rebranding exercise and ABA became PBS (Positive Behaviour Support). A piece of Orwellian spin, it is neither positive nor supportive. The ABA/PBS controversy illuminates how the autistic senses of self and agency are directly undermined and assaulted by those who profess to be providing a dedicated autistic health care benefit. At the root of ABA/PBS is a desire to remodel the autistic child towards a conformist model. A process of normative coercion. This process has been likened to gay conversion therapy, an apt analogy, with similarly prejudiced foundations and equally harmful outcomes.
An attempt to change behaviour is unethical without a thorough knowledge into why the original behaviour is occurring. Behaviour involves motor-control processes. In order to feel a sense of agency one must feel in control of one’s motor-control processes. For an autistic child, any attempt to change her behaviour will result in a serious decrease in the senses of agency and self. Not only because her actions are now under the control of someone else, but also because her original actions may have been for allostatic purposes to control stress and anxiety and maintain a feeling of equilibrium. Many autistic behaviours are for reasons of de-arousal, failure to recognise this results in an increase of stress and anxiety levels in the child.
To properly interpret behaviour we must first abandon the notion that cognition only resides in the brain, and that autism is simply atypical neural wiring. How the child lives in the world needs to be analysed holistically. The brain, the autonomic, endocrine and immunological systems, the environment and the child’s perceptual account of what is going on inside and outside her body. The functional analysis underlying behavioural approaches not only fails to properly account for lived experience, but also actively harms due to its lack of scope and its sub- psychoanalytical theory.
In recent years, “The concept of endocrine function…. was expanded to paracrine, autocrine, juxtacrine, and intracrine functions, whereas the classic endocrine system, which included the traditional endocrine axes, was expanded to every organ and cell in the body that produced and responded to hormones.” (Organization and Integration of the Endocrine System, George P Chrousos.)
!Given the importance of the endocrine and autonomic systems in maintaining homeostasis, it is clear that one should consider an autistic child’s behaviour in the light of these systems and their interactions both internally (interoceptive) and externally (environment). Homeostasis regulation is maintained (primarily) by the autonomic system signals and endocrine chemical messengers acting in alliance.
Any attempt to change behaviour without careful attention as to why the child displays atypical behaviour in the first place, is to misunderstand autism and the lived experience of autistic children. It is also an assault on the agency and autonomy of the child, leaving her unable to experience the world in an authentic and natural way. The child is expected to cede control of her actions – actions that contribute to her feelings of well-being – and replace them with actions she finds distressing, such as eye contact. This explains the prevalence of PTSD,
anxiety and panic disorders among those subjected to the inappropriate practice of ABA/PBS.
The assault on the child’s senses of agency and self (incredibly) doesn’t stop there. Many autistic children also receive antipsychotics or other psychotropic medication. One recent study (Symptom scores and medication treatment patterns in children with ADHD versus autism, Susan D. Mayes et al) observed, “Children with ADHD and children with autism treated with medication were far more impaired in all areas than their untreated counterparts and typical peers.”
As mainstream medical approaches to autism are correctional and essentially coercive, a power structure has evolved that delegitimises autistic experience. The implementation of psychiatric chemical interventions and behaviouralist psychology ‘therapies’ that attempt to ’normalise’ only serve to vitiate the senses of agency and self in autistic people.
All of this, the cruelty of ABA, the inappropriate use of chemical coshes and the apparent indifference of the law to child abuse when it involves autistic children, is a tremendous assault on the autistic senses of self and agency. I propose it also contributes to the high levels of anxiety and panic disorders and PTSD found in the autistic community.
The pathologisation discourse of medical accounts of autism also feed into the negative experience of autistic individuals. Language is not an empty vessel and the continual unfavourable descriptions, such as ‘challenging behaviour’ instead of the more accurate, reactive behaviour, compound the negativity to a degree that the narrative becomes antipathetic to autistic experience.
Discrimination and stigma have a corrosive effect on the identity of those it is directed against. The perception of personal discrimination is known to be associated with depression and anxiety (Pak, Dion and Dion, 1992) and physical symptoms like headaches (Landrine et al., 1995). As autistic people are perceived to be different, a labelling, stigmatising process leaves them feeling rejected and isolated (Goffman, 2009).
The emotionally charged concept autistic people generate from the de- humanising, discriminatory discourse so prevalent in their sociocultural milieu, manifests as palpable bodily states. “language becomes enmeshed in our organic life: we incorporate into our bodies a linguistic style of being. This is also the reason why” (Fuchs, Ecology of the Brain p 201) “linguistic events have a direct route to even our physiology, why the complex sociocultural and interpersonal matrix disclosed by an insult or a compliment make our blood rush in quite different ways” (Cuffari et al. 2015, 1116).
“According to the enactivist view, the brain does not create internal representations of the world; it does not act on some inner model of the surrounding environment; it is instead involved in responding to the environment in an ongoing dynamic adjustment, as part of and along with the larger organism, finding the right kind of attunement with the physical and social environment” (Gallagher et al. 2013).
In enactivism, the physical and social environment offers affordances. The term affordance was first coined by the psychologist James J. Gibson in his book, The Senses Considered as Perceptual Systems. To give an example: imagine two people are looking at a tree with a cat stuck up at the top. Both are thinking of rescuing the cat, but one of them is an experienced tree surgeon. We can surmise that the tree offers more affordances to the tree surgeon than to the other person. Gibson has taken the verb, to afford, and turned it into a noun – affordance. Some philosophers use the term ‘cash in’ when describing the action of utilising an affordance.
In “Agency, embodiment and enactment in psychosomatic theory and practice”, Kirmayer & Gómez-Carrillo (2019), use the example of what is known as ‘resignation syndrome’ (RS) among refugee children in Sweden to offer the view that, “agency can have many fine gradations that emerge through looping effects that link neuro-phenomenology, narrative practices and cultural affordances in particular social contexts.” These children (several hundred as of 2001) “presented clinically with a syndrome characterised by depression and behavioural withdrawal that progresses to stupor and finally a state of apparent unconsciousness, with loss of pain response, requiring nasogastric tube feeding and intensive care.” One common denominator was that these children were from families awaiting a decision about their refugee status.
Many of the responses to RS will be familiar to the autistic community: poor parenting skills, intentional or conscious decision by family or child, biological vulnerability, learnt helplessness and hopelessness, othering and reduced empathy. Comments about the high cost of treatment and the blaming of clinicians for encouraging and increasing the problem. The episode highlighted how social, political, medical and economic processes shape both the public perception and the children’s experience of the healthcare response. Labels were attached, depressive devitalisation (DD) and pervasive refusal syndrome (PRS). These two labels would lead to different treatments and sociopolitical responses each with connotations of blame and indolence respectively. The proposed alternative PAWS (pervasive arousal-withdrawal
syndrome) “introduced an explanation in terms of a neurobiological mechanism of simultaneous hyper-arousal of the sympathetic and parasympathetic autonomic nervous systems, which results in a ‘deadlock’ that manifests as refusal (Kenneth P. Nunn et al. 2014). This description aimed to account for the same symptomatology as the above-mentioned DD or PRS but re-conceptualised ‘extreme anxiety avoidance’ and ‘behavioural paralysis’ as expressions of the specific patterns of autonomic response.” Although an extreme example, the phenomenon of RS demonstrates the importance of agency and autonomy. In a situation of massive uncertainty, that left them bereft of any meaningful sociocultural affordances, the reaction of the children’s autonomic system was drastic.
Research on sense of self “point(s) to the fact that there is not a self- specific neural system or a single sense of self” (Tsakiris 2010). Sensorimotor signals play a role in the experience and awareness of one’s self. During processes of sensorimotor interaction (Haggard, 2005) and multi-sensory integration (Tsakiris 2010) the experience of control and possession of one’s body during actions are fundamental for a sense of self and agency. Awareness of one’s intra-corporeal unity or ”proprioceptive spatiality” (Gallagher, 2006, 351) via multiple sensory inputs; vestibular, gravioceptive, visual, kinaesthetic, muscular, cutaneous, is essential for a feeling of self-ownership. With these multiple mechanisms in mind one can begin to appreciate the insult to a child subjected to the behaviour ‘therapy’ of ABA.
Many of us with autistic children in our immediate or extended family know how they can spin or bounce for reasons of vestibular (Inner ear – balance) stimulation. Some children (and adults) may gargle, hum or chant to aid vagus nerve stimulation. Autistic children display an impressive range of allostatic actions to help maintain a sensory equilibrium and homeostasis. Again, to deliberately interfere with these allostatic actions for reasons of conformity is an insult and act of ignorance with a negative impact on the senses of sense and agency.
Although Gibson’s original concept of affordances started as a description of how we perceive the environment, modern phenomenological positions like enactivism apply the concept to the social and cultural domains. Enactivism also draws on neuroscience to inform its position that the brain is a mediating organ placed in a circularity of brain-body-environment, that – particularly perception-action – cognitive processes “involve bodily and environmental
factors” (Gallagher, 2017). It follows from this that the enactive view of
the senses of agency and self differ in some respects to that of the neuro-reductionist position.
The enactive position on the sense of agency could be said to be evolving. As phenomenology places an emphasis on subjective experience, I am going to explore how autistic experience is particularly susceptible to a diminished sense of agency due to atypical interoceptive mechanisms that threaten homeostasis, how interoception, exteroception and proprioception integrate, and the consequences of the poor response to these threats by mainstream behavioural psychology. This exploration will incorporate how anxiety presents differently in the autistic community and the neural/interoceptive/ exteroceptive/proprioceptive activity that underpin these processes.
Interoception can be described as the processing of sensory input from internal organs, tissues and cells, the endocrine and immune systems. It monitors and controls the internal body. Signals from the brain are called efferent signals, signals to the brain are called afferent signals. Interoception falls under the broad description of bodily afference. Visceral afference is information flowing from interoceptors in the organs, there’s also olfactory and gustatory receptors mostly associated with the limbic system and the autonomic nervous system. The somatic system carries information from the muscles, joints and skin etc. The systems often act in an integrated way called somatovisceral afference.
Exteroception is the the delivery of external signals via exteroceptors, vision, hearing, touch, heat, cold, pain, smell and taste. Proprioception (kinaesthesia) is the sense of body position and movement. Proprioceptors are found in muscles, joints and tendons, these detect and signal movement, velocity of movement, weight bearing and limb limits.
Although many of the interoceptive signals can be considered sub- personal mechanisms, (or more accurately, it is difficult to establish if we can perceive them)), there has been research to show that, for instance, “the transient neural response evoked by each heartbeat plays a role in cognitive functions…, such as emotion, self- related cognition, and also subjective visual perception”, (Azzalini, Rebollo, Tallon-Baudry, 2019). Cardiac and gastrointestinal signals travel to many subcortical and cortical areas involved in cognitive tasks. To use myself as an example, I don’t receive the signal that carries the message of hunger. I have learnt over the years to regulate my food intake. For many years I was underweight, which can obviously elicit a negative psychological response for a variety of reasons.
Allostasis is the process of maintaining homeostasis (stability). This is achieved by fine control of the immune, autonomic nervous and neuroendocrine systems. Behaviour change and action is also an allostatic mechanism.
In “Physiotherapists’ experiences of the meaning of movement quality in autism: a descriptive phenomenological study”, (Bertilsson et al, 2020), ten specialist physiotherapists with, “3–35 years’ experience of body awareness therapy and of observing movement patterns in and treating people with autism” were interviewed to capture their observations of working with autistic individuals from infants to adults. “The results of this study provide insight into how the lived body is expressed in movement quality for people with autism as an expression of the embodied individual. There is a need to disrupt the spiral of negative bodily symptoms in a way that is adapted to suit the needs of people with autism in order to increase their bodily self-consciousness.” Some of the comments made by the physiotherapists describe how cognitive functions can be negatively impacted by atypical sensory signals and motor actions, “You don’t have access to your entire body and all its resources. […] I think this not only affects the body but also cognitive functions,” (participant 4). The researchers conclude, “Adequate interventions, such as enhancing sensory inputs, may help guide people with autism by strengthening their bodily resources, allowing them to experience positive feelings associated with body and movement.” This is consistent with the phenomenological position that agency emerges via “I move”, to “I do”, and thence to “I can”, how dynamic
proprioception is a baseline for the development of cognition (Sheets- Johnstone, 2017), “where sensorimotor, cognitive, experiential, and affective aspects of embodiment are brought together” (Bertilsson et al; De Jaegher, 2013; Grohmann, 2017). “From a philosophical perspective, De Jaegher (2013) theorised that enaction brings together all body functions. Our results support this theory from sensorimotor and psychological perspectives, in which enaction will show in movement quality. These different disciplines thereby support each other in the phenomenological experience of embodiment in people with
autism” (Bertilsson et al 2020).
Further evidence for the dynamic interaction of movement and cognition is provided in, ‘Abnormal Gait Patterns in Autism Spectrum Disorder and Their Correlations with Social Impairments’, (Yi, Wei, et al, 2020) which concluded, “These walking abnormalities were dependent on their social impairments but independent from their intelligence, indicating a close
relationship between atypical motor coordination and core symptoms of autism.”
It should be noted that anxiety can arise not only due to inaccurate interoceptive processes but also higher interoceptive accuracy. “… (with) obsessive–compulsive disorder (OCD), anxiety, and psychosis, …. aberrant visceral precision may result in an overly precise (or imprecise) metacognitive self-model (Bliksted et al., 2017)), locking the patient into an unrealistically uncertain world.” (Allen and Tsakiris, ch., 2019).
Hopefully readers can begin to understand that, “enactivism stresses how mind emerges from embodied beings interacting with their environment,” (de Haan, 2020) and how through these interaction we makes sense of ourselves and our environment. In 1985 Simon Baron- Cohen, Alan Leslie and Uta Frith “proposed that autistic children lack the ability to ‘mindread’,autism became established as a disorder of the higher-order cognitive abilities. In recent years, this picture has changed as cognitive scientists recognize that cognition must be understood in its dynamic relation to bodily movement, perceptual processes and social interaction (Glenberg, Witt, and Metcalfe 2013),” (Boldsen, 2018).
In a paper that echoes some of the observations made by the physiotherapists above, ‘Toward a phenomenological account of embodied subjectivity in autism’, Boldsen (2018) applies phenomenological analysis to the accounts of autistic experience in Tito Rajarshi Mukhopadhyay’s autobiography ‘How can I talk if my lips don’t move’. Born in 1989 Mukhopadhyay was diagnosed in early childhood with severe autism. Although practically non-verbal throughout his life his mother taught him to read and write. Boldsen uses Mukhopadhyay’s description of “issues centered on bodily self-experience, sensation, movement and perception” to explore bodily self-experience, “not as a conscious or explicit view of the body as if looking in a mirror, but as a tacit and pre-reflective awareness of one’s own body accompanying any action, perception or thought.”
In the book Mukhopadhyay tells how he used the movement of a ceiling fan “in his childhood home to maintain bodily feeling of ease and control.”
“I would stand right below it, and rotate my body as fast as I could, wondering whether I too became as transparent as the fan. […] I could gather my body parts while I rotated, so that I could feel my arms, legs, and fingers, in total control. […] Once again, I felt sure of my movements and what I was supposed
to see as I went around at that speed. Feeling sure calmed my senses. (Mukhopadhyay 2011:59-60)”
This passage shows us how the act of spinning increases Mukhopadhyay’s feelings of ownership over his body. He goes on to relate how during power cuts , “I felt helpless and scattered once again, as if my existence depended on the movements of the fan.” Boldsen comments, “Experiencing the body as a bundle of disconnected parts is essentially an objectification where the body, rather than being an experiencing subject, is experienced as if it were an object in the physical world.”
In another account of self-estrangement Mukhopadhyay describes how performing certain movements were essential to his feelings of well- being, one of these was to climb up and down the stairs. During a visit to the doctor when a child, his mother stopped him climbing the stairs, something she had never done before.
I was puzzled. Mother had never stopped me from climbing any staircase before. […] And when I got puzzled, I got disoriented. And when I got disoriented, I got scared. I felt as if my whole existence depended on those staircases. ‘What if I stop existing when I stop climbing them?’ Panic took over my eyes, blinding them shut. It took over my ears, deafening me with the sound of a scream, which was my own, as I recognised it. […] My body and my surroundings were dissolved in the sound generated by my scream. Once it took control, I knew no one had any power to stop it. I had no power to stop it either. (Mukhopadhyay 2011:40-41)
Here Mukhopadhyay feels his very existence will cease, so intense is the panic that his scream “has become a mere auditory object, originating elsewhere and only recognised as his own as he hears the sound” (Boldsen 2018).
Boldsen quotes Damian Milton’s objection to the view that autism is a “‘‘dysfunctional deviation from an idealised notion of normalcy’’ (Milton 2014b:6)” and again, “Such views are informed by research that […] discounts the subjective experiences of those who identify as being on the autism spectrum themselves as worthy of rigorous academic study. (Milton 2012:884)”
The accounts of the physiotherapists and Mukhopadhyay show how phenomenology grants a “conceptual and methodological framework that studies subjective experience and embodiment in a number of
different areas highly relevant to autism research, such as perception, movement and sociality” (Boldsen 2018). With enactivist psychiatry, “One of its strengths is that offers a solution to psychiatry’s ‘integration problem’ of how to relate the diverse factors—patients’ experiences, physiology, existential stances, and sociocultural influences—that are at play in psychiatric disorders” (De Haan, 2020).
(Reigning cats and dogs on the autistic community)
Applied Behaviour Analysis (ABA) beginnings were at the University of Washington “when Montrose Wolf, Todd Risley and colleagues conducted a series of studies designed to change behavior using principles of operant conditioning delineated by B.F. Skinner,” (K. Dyer, Encyclopaedia of Autism Spectrum Disorders, 2013). Early research into conditioning was undertaken by Pavlov in his famous dog experiments demonstrating associative learning.
In 1905 American psychologist Edward Thorndike came up with what he called the ‘law of effect’, this laid the foundations for the modern understanding of operant conditioning. Thorndike placed a cat inside a ‘puzzle box’. The only way the cat could get out of the box was by pressing a lever. Initially the cat continued roaming inside the box until it accidentally pressed the lever. Thorndike repeatedly placed the cat inside the box. The cat gradually spent less time in the box as it associated pressing the lever with being able to leave the box. Being a scientist, Thorndike didn’t try this experiment just on one cat, he discovered a number of cats replicated this association.
B. F. Skinner continued experimenting on animals in boxes introducing food rewards, electric shock punishments and drew conclusions that are at the core of ABA today: positive reinforcement, negative reinforcement, positive punishment and negative punishment.
The next major figure in the history of ABA is Ole Ivar Lovaas. Lovaas’s use of strongly aversive techniques were frowned upon by some at the time, but measured by ’normative’ standards were judged to be successful in the fairly new field of therapies for autistics. Lovaas analysed autism in “terms of separate behaviours that include excesses (behaviours displayed too often or intensely) and deficits (behaviours that are not displayed often or well enough).” (S. Eikeseth, Lovaas Approach, entry Encyclopedia of Autism Spectrum Disorders, 2013). Lovaas’ research was dogged by controversy both for the methods used and the failure of subsequent researchers to replicate his findings. In a telling comment Lovaas stated, “I had found the ideal persons to study,
persons with eyes and ears, teeth and toenails, walking around yet presenting few of the behaviours that one would call social or human.” Like a lion tamer subdues and renders a lion compliant in an abominable operation of coercion, the ABA therapist attempts to change a neurodivergent child into a neurotypical child through a process more akin to tyranny than therapy.
If, for some strange reason, someone wanted to strip autistic children of autonomy and destroy their senses of agency and self, ABA/PBS appears purpose designed to do so. The seemingly wilful misinterpretation of autistic actions and behaviour beggars belief. As we have seen in the accounts of the physiotherapists and Mukhopadhyay above, autistic experiences of being-in-the-world cannot (and must not) be measured against, and compared to, an inappropriate normative standard. To do so is unethically coercive, an act of cognitive colonialism that inflicts psychological distress and is in direct conflict with human rights standards.
In 1975 I joined Amnesty International – a fairly new at the time – human rights organisation. I was assigned two prisoners of conscience one a trade unionist in Nicaragua, the other an Orthodox priest in Soviet Russia named Gleb Yakunin. As I was reading Gramsci at the time, Father Gleb Yakunin wasn’t someone I could really enthuse about, but principles are principles and I wrote to the relevant ministries in both countries asking for clemency and release from imprisonment. Indeed, after the fall of the Iron Curtain, Ronald Reagan – whom I abhorred even more than the current buffoon in the White House – visited Moscow, and met Gleb Yakunin. I relate this story in order to counter a common criticism regularly voiced against the neurodiversity movement.
Just as Amnesty International advocates for basic common standards of justice for all, regardless of where they are positioned on the political spectrum, the neurodiversity movement advocates for all, wherever they may be on the autistic spectrum. This is a simple truth, oft expressed. It has been my experience that those who opine otherwise, are those who care little about the rights of any minorities.
Group perceptions or social group identities “provide practical and psychological resources and support to help individuals overcome adverse challenges,” (Haslam & Reicher, 2006). This enhances sense of agency not only at the group level but also at the level of the individual. (Liman Man Wai Li et al, 2019). The ND movement provides autistic people with these resources to help maintain an authentic identity.
One could also argue that the ND movement encourages autistic people to forgo the act of masking. I know from personal experience that masking long term can exact a toll perhaps similar, in some ways, to that exacted on black people in the U.S.; an outcome dubbed ‘John Henryism’. Anything that encourages autistic people to embrace their true identity, will surely have a positive effect on their senses of self and agency. The ND movement is a positive force in this way.
“The Neurodiversity Movement stands for the idea that we should view neurology through the same civil rights lens as we currently view race, religion, sexual orientation and other forms of what’s termed ‘legitimate human difference.’” (Ari Ne’eman, CBC News). Whilst agreeing in general with this statement by Ne’eman, I would suggest it leaves some complexities unresolved. “Is it [cognitive difference] a neutral biological fact that only becomes disabling and difficult under particular social circumstances, as the Social Model suggests? Or do some forms of cognitive difference, such as profound intellectual disability, limit one’s possibilities for full participation in any social situation?” (McKearney, Zoanni, 2018). Is the Social Model relevant (and necessary) across all cultures? Is it particularly relevant in Western cultures that are technologically advanced but socially disrupted by the primacy of economic activity? Is cognitive difference cherished in more eco-friendly societies? These are interesting questions that will perhaps be more difficult to answer in the light of future medical advances. The key issue will be, does this research have the potential to act as an enabler with regards to the senses of agency and self.
Further evidence of the discrimination faced by the autistic community has surfaced through the reaction of some to the increase in diagnoses. All manner of environmental factors have been summoned to pronounce us ‘damaged goods’; vaccines, c-sections, gluten, air pollution, mercury, fluoride, etc.. I recently read that autism may be due to too much screen time. These theories are not only obviously wrong they are, frankly, insulting in their conclusion that autistic individuals are less robust in their defences against environmental factors that act on everyone.
The answer to the increase in diagnoses lies in the word itself – diagnoses. The percentage of autistic people in the community has been constant but awareness of autism among teachers, GPs and the general public has increased. Diagnoses of autism in the BAME communities remain low due to structural racism. “As rates of autism diagnoses have increased, there has been a matching decrease in rates of diagnosis of “mental retardation” or “intellectual disability,” suggesting that children
who used to receive these labels are now being diagnosed with “autism” instead,” (K. J. Mitchell, Innate, 2018). Although women are thought to be disadvantaged by male bias in the diagnostic process, some inroads have been made in this regard. Whether there is a genetic reason for lower incidence of autism in women remains debatable. A recent population wide study in Sweden concluded, “Our findings do not suggest female protective factors as the principal mechanism underlying the male sex bias in ASD”, (Dan Bai et al., 2020). Even with these substantive explanations for the increase in diagnoses, many autistic people without intellectual disability (> 75%) suffer further assaults on their senses of self and agency from those who question the validity of their diagnosis, as if diagnoses are easy to obtain and are handed out indiscriminately. These dismissive attitudes unfortunately result in the concomitant scarcity of appropriate assistance available to those labelled ‘high functioning’, leading to a further erosion in autistic autonomy.
In terms of genetic causes, intellectual disability, autism, schizophrenia, epilepsy are not distinct from each other (Mitchell, 2018). Although psychiatric and neurological categories and labels are given, in reality these categories “really are umbrella terms for hundreds, or perhaps thousands, of distinct genetic conditions” (Mitchell, 2018). Recent research has shown that many “regulatory hcASD genes (hc = high confidence) are broadly expressed in multiple organs and tissues in addition to the developing prenatal brain” (Courchesne, Gazestani, Lewis, 2020). In other words, one cannot disassemble the various components of a person’s living-in-the-world experience to reveal the autistic component like one can disassemble a car to reveal the engine. To do so, would be to deny that person’s sense of bodily self. The fact that so many people with a learning disability die 20-40 years before the average life span is testament to the dehumanising aspect of reducing people to psychological and biological sub-units that fail to recognise the relation between body and self. “…..multi-sensory percepts are not integrated in a simple additive manner, but instead respect a set of conditions that guarantee the functional and phenomenological coherence of the experienced body.” (de Vignemont, Tsakiris, Haggard, 2007).
Autism research by autistic researchers has produced work of much merit. Nearly all autistic people are aware of Damian Milton’s “double empathy problem” (Milton, 2012). This research is in itself a boon to autistic autonomy, free of the discriminatory discourse and offering a theory that concurs with autistic experience.
Not all accounts of autistic experience ring so true. Claims that Silicon Valley and Oxbridge are ’sheltering houses’ for autistics, particularly irritate. With only 16% of autistic adults in full time employment (parliamentary debate, 2/7/2019) (Advanced Assessments 2020) most autistic people have bruising encounters with the welfare system. Such claims act adversely in a denotative and connotative manner upon the majority of the autistic population, in a way reminiscent of those who regarded a diagnosis of Asperger’s as placing them at the top of an autistic hierarchy.
Intersectionality “is often mentioned in passing but less often considered in depth,” (Gasdaglis, Mavda, 2020). Although ethnicity and socio- economic status play no part in the incidence of autism, (Bertrand et al. 2001; Croen et al. 2002; Dyches et al. 2004; Palmer et al. 2005; Powell et al. 2000), ethnic minorities are under-represented in the diagnosed community, (CDC 2006; Mandell et al. 2002), “a substantial part of the problem may be attributed to biased professional perceptions of children from ethnic minority groups (Kreps 2006; Mandell and Novak 2005; van Ryn and Fu 2003; Zwirs et al. 2006a),” (S. Begeer et al, 2008). These biases obviously do not go unnoticed by those subjected to them. The assault on the senses of self and agency are multiplied for those in minority groups, so research on the deleterious effect of intersectionality by those suffering its ramifications should be encouraged by the ND movement. As Amanda Saxe observes in her paper, The Theory Of Intersectionality: A New Lens For Understanding The Barriers Faced By Autistic Women, “in order to truly utilise intersectionality in a way that is liberating, inclusive, and respectful, it is imperative that Autistic women, and Autistic people in general, be included in the conceptualisation, design, and implementation of research projects.” This is particularly important given high levels of abuse suffered by autistic women. This dreadful phenomenon is in urgent need of research and services that are specifically designed to help autistic women escape and recover from this abuse.
In 2017 a large German autism charity, Aktion Mensch, stopped funding ABA therapy due to the criticism of many of its members. A victory for autistic advocates of human rights. One important point should be made, now that – hopefully – we are seeing a more general change in attitudes towards ABA, all potential therapies and interventions should be subjected to rigorous scrutiny. The global autism therapeutics market is expected to reach $4,612.1 million by 2026, (Fortune Business Insights, 2019). “The last decade has witnessed a rapid increase in private equity acquisitions of health care organisations.” (Brown et al,
2019). All businesses, great and small, are discovering that leveraging the language of ND advocacy to help promote their products can be a powerful component of a winning sales strategy. After reading recent research and some articles by the admirable Michelle Dawson with respect to high levels of conflict of interest in autism research, I would suggest the ND movement makes use of social media to call out all conflicts of interest, regardless of how well-meaning or ‘on message’ the therapy or intervention may sound or is presented.
To summarise, the assaults on the autistic senses of self and agency are multiple. Diminished senses of self and agency are known to cause anxiety, depression and PTSD in other minorities that suffer discrimination and stigma. However, the different presentation of these psychological problems in autistic individuals is an under researched area. Body-grounded mechanisms, such as proprioceptive and sensorimotor processes as well as interoceptive processes are atypical in the autistic population. How autistic people execute actions to maintain homeostasis and equilibrium has for too long been mistaken for aberrant behaviour. Diminished senses of agency and self leave one more susceptible to abuse. The consequence of being subjected to the inappropriate therapy of ABA where a child learns she is not in control of her mind or body, leaves her extra vulnerable to abuse.
In my next piece I will explore the neurobiology of anxiety and depression in the autistic brain, and how enactive psychiatry can offer an overarching framework to treat these complex conditions.
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