Category Archives: Autism

Proposing the “Medi-Social© Model of Disability and Neurodivergence” II -The Unwarranted Bias of the Social Model of Disability and Neurodivergence-

Medi-Soc Mod Neurodivergence Title Pic 1

The late Prof Mark Oliver, presented on 23rd July 1990, at the Joint Workshop of the Living Options Group and the Research Unit of the Royal College of Physicians, a paper titled “THE INDIVIDUAL AND SOCIAL MODELS OF DISABILITY”, where he wrote:

“The genesis, development and articulation of the social model of disability by disabled people themselves […] does not deny the problem of disability but locates it squarely within society. It is not individual limitations, of whatever kind, which are the cause of the problem but society’s failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organisation. […] Why then is the medicalisation of disability inappropriate? The simple answer to this is that disability is a social state and not a medical condition. Hence medical intervention in, and more importantly, control over disability is inappropriate. Doctors are trained to diagnose, treat and cure illnesses, not to alleviate social conditions or circumstances. […] Disability as a long-term social state is not treatable and is certainly not curable. Hence many disabled people experience much medical intervention as, at best, inappropriate, and, at worst, oppression.” [emphasis mine]

I have deliberately chosen to ignore for the moment, the infuriating, existential, onto- and deontological ineptitude of the “disability is a social state and not a medical condition. Hence medical intervention in, and more importantly, control over disability is inappropriate” statements, unwilling to divert from the purpose of this study.

I have nevertheless, emphasised the “Why then is the medicalisation of disability inappropriate?”, in order to point the reader to a major source of what the proponents of the Social Model of Disability (SMD) are increasingly advocating as the ‘de-medicalisation’ of disability, and more precisely in the context of my study, of Autism, through what has become an increasingly militant -and in my opinion increasingly divisive- movement called Neurodiversity (NDv).

Why do I perceive this, as an unwarranted derailment from the principles of the Autism Act 2009? Because the Act’s “1 Autism strategy” states “(1) The Secretary of State must prepare and publish a document setting out a strategy for meeting the needs of adults in England with autistic spectrum conditions by improving the provision of relevant services to such adults by local authorities, NHS bodies and NHS foundation trusts”, therefore in my educated opinion, any Autism strategies antagonistic of the medical/clinical aspects of Autism, contravene to both the spirit and the letter of a legal framework mandating such strategic responsibilities also to the UK’s NHS.

Far from being of an isolated incidence, according to the “DEMAND FOR AIMS AND SCOPE” of a renewed effort in 2018 to restart the “Autism Policy & Practice Journal”, “Recent years has seen the growth of autistic activist academics aligned to the neurodiversity movement”.

The Neurodiversity Movement (NDvM) is home to an Autism Rights Movement (ARM), introduced to the larger public by Andrew Solomon in 25th May 2008 as:

“The Autism Rights Movement – A new wave of activists wants to celebrate atypical brain function as a positive identity, not a disability. Opponents call them dangerously deluded.”

Unfortunately from the perspective of the past nearly three decades, Judy Singer’s “sacrosanct, universal truth” legacy, which I have discussed in one of my previous articles, seems to have completely missed Prof Oliver’s paper’s core target, clearly stated as having been written “on PEOPLE WITH ESTABLISHED LOCOMOTOR DISABILITIES IN HOSPITALS”!

In all honesty, I have always had a sense of derailment when confronted with the ridiculous claims by NDvM’s proponents, of the Social Model’s applicability in Autism, which turned out to be somehow subconsciously linked to Prof Oliver’s exact goal with his paper, i.e. the inpatient needs of individuals with locomotor disabilities! And to ensure fair justification for my judgement, it was Prof Oliver himself, in an interview with the National Union of Students UK posted on 22nd Nov 2018, who said the following:

“The two main criticisms are one, that the social model doesn’t take account of the experiences of impairment, in other words you know, as disabled people we have, we do have medical consequences and so on we do have, sometimes we feel pretty shitty about ourselves in our lives, sometimes we’re real just like non-disabled people […] but the social model was never designed to do that…” [emphasis mine]

In other words, it becomes obvious that despite the clear and harsh anti-medical attitude of the 1990 paper, Prof Oliver seems to dissociate himself of the snowball effect on his 1990 stand, claiming that the Social Model was never designed to consider individual experiences of impairment and their medical consequences, which in my opinion and context, include the severe, debilitating physical, psychological and emotional consequences of living with any and all forms of Autism and other Neurodivergent (NDg) conditions, but especially severe, Higher Dependency Autism!

It doesn’t take much investigative research for one to understand that this nearly three decades-long “misunderstanding” of the SM’s intended goals resulted in a many-headed hijacking of disability rights from generations of individuals living with Autism Spectrum conditions by an elitist, Lower Dependency, Intellectually Proficient wave of diagnosed autistics and their “self-identified” club. All this with detrimental consequences for especially those having to rely due to the severity of their disorder(s)/condition(s) on their oftentimes exhausted and desperate families, left year after year without vital assistance and help by their local governments, at the dire mercies of social services without much competence in Autism and Intellectual Disabilities.

And if most would expect that self-proclaimed “national” spearheads of autism expertise are working hard to give all individuals with Autism Spectrum Disorders and/or their dedicated families a stronger, more meaningful voice at the dialogue tables where more favourable decisions are made, they’re heading for disappointment.

Reading through the National Autistic Taskforce’s (NAT) “An independent guide to quality care for autistic people”, encouraged by being informed from the start that “This guide is authored entirely by autistic people” (pg 3) also that “We seek to ensure autistic voices are included alongside those of families, policy makers and professionals” and knowing from a lifelong personal, pastoral, educational and clinical expertise, the unquestionable importance of family infrastructures for the support of Autistic individuals, I applied to the 54 pages-long document, a search for the word ‘family’. To my surprise -and dismay-, the result showed a meagre 13 (thirteen) words, which as much as I would hope to be wrong, reveals a narrative in which family doesn’t seem to be considered the supportive and protective structure around the centrality rightfully assigned to the autistic individual. At a closer look, my fears don’t seem entirely unjustified:

“A particular challenge is that “the rights of autistic adults to autonomy … includes the right to make decisions that others may consider unwise.” (P.20 National Autism Project, The Autism Dividend (2017) citing Mental Capacity Act principles) […] Staff, service users, family, friends and other interested people must feel confident and comfortable in recognising and challenging policies, practices and assumptions which are risk averse or undermine autonomy.” (pg 10) “Have a designated member of staff (preferably a Communication Support Worker (CSW) responsible for exploration based on observations and trials to find the most appropriate communication systems for individuals […] responsible for helping each person initiate and maintain contacts with family and friends, and people in positions of authority (such as professionals).” (pg 13)

The reason why my fears don’t seem at all unjustified is the fact that besides noticing that it took 13 pages for the document to mention the third occurrence of the word ‘family’, it does it in a context where the family’s supportive and protective rights (with a partially justified caveat in cases of prolongued institutionalisation) are undermined by the intercalation of a CSW, whom seems to be expected to act as a ‘guardian of autonomy’ including situations when this could mean “unwise” decisions and actions, apparently also “responsible […] to find the most appropriate communication systems for individuals” and for “helping each person initiate and maintain contacts with family and friends, and people in positions of authority (such as professionals)” which I would presume imply medical/clinical professionals. I shouldn’t probably wonder why a similar search using the word “medical” returned “No results”…

However, it beggars belief as to why would a “staff member” other than e.g. a family member or a highly competent clinician, intercalate to help “initiate and maintain contacts”?

The answer to my question is to be found on pg. 3:

“The more autonomy a person has, the less support services need to rely on external authorities such as good practice guides, instead looking to the person themselves as the primary source of information, instruction and guidance. The intention is to move beyond co-production towards autistic leadership. This guide sets out some of the practical details involved in achieving self-determination for autistic people.”

The major problem with this maybe otherwise laudable effort, (which echoes nevertheless Prof Oliver’s idea of “oppressive medicalisation”), quite obvious from introductory statements according to which “This guide is authored entirely by autistic people with extensive collective knowledge and experience of social care provision to autistic people” (pg 3) and “Critical to the success of the National Autism Project has been an advisory panel of autistic people who provided expert input and critique throughout” (pg 7), is an apparent exclusion from authorship, of family members providing the care for Higher Dependency autistic individuals, and equally important their clinical teams.

It is also clear from all these statements that as mentioned on pg 3, this guide has been authored by “autistic people with extensive collective knowledge and experience” of absolutely nothing else but “social care provision to autistic people”, and therefore severely lacking the prerogatives to indeed become a nationally relevant guide for the overall health and wellbeing of not only autistic individuals themselves, but also their 24/7 care and dedication providing families.

Regardless of how benevolent one reads these pages, it would seem that neither the “oppressive” medical system (Oliver, 1990) nor the autistic individual’s family are being trusted anymore to promote, achieve and maintain their autonomy, this role being apparently assumed by the Social Model biased ideology outlined in the NAT’s guide, facilitated by a CSW “staff member”.

Interesting times are these for a theoretical philosopher; times when suspicions of bias need not to be justified by a thesis’ opponent, being readily provided by the proponents themselves.

Such could be the case, reading through the “Focus and Scope” of the “Autism Policy & Practice Journal” where the very first of the journal’s focus and scope is:

“To be an autistic-led (emancipative) good practice journal with a bias towards social model based adjustments and good practice.” [emphasis mine]

Now, I am aware that paraphrasing one’s indulgence towards themselves,  “The finger of each saint points towards themselves” (Hungarian proverb). However, no Journal of Autism & Policy Practice, which hasn’t included in their title “A Social Model based Journal of …” should allow itself to have even a shadow of bias, not to speak about a declared, biased focus and scope. Please do not imply maliciousness when I wonder if this may have been the reason why one could read in its Archive, that “Unfortunately, due to lack of support this journal has been discontinued”; “Open Access Autism” should exist unbiased…

As I mentioned in my previous article, the “Medi-Social Model of Disability and Neurodivergence would holistically and intersectionally consider Neurodivergent conditions in their Medical and Social complexity, with a realistic emphasis on understanding these conditions through also considering the invaluable lived-experience of individuals living with these conditions, and/or the accumulated co-participative experience of their families, caregivers.

I can boldly assert that the structural elements of a Medi-Social Model of Disability and Neurodivergence have always been present in what has been known as the Medical Model, which could have never existed without its Social aspects, proven by the well-known existence of Multidisciplinary Teams, mandated by legislation to safeguard each step of an individual’s journey through their Recovery.

A Medi-Social Model of Disability and Neurodivergence would open the possibility of exploring new and necessary horizons of how all participants in these multidisciplinary teams, such as the individuals themselves, their caregivers, their clinical team, their social worker team etc, could change the Recovery Pathway Dynamic from a Clinical-Team-dependant hierarchical, to a Multidisciplinary Co-participative/Intersectional.”

 

(to be continued…)

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Proposing the “Medi-Social© Model of Disability and Neurodivergence” I

[Rev.] Romulus Campan FDScMH (Forensic), LTh (Hons), CertEd-QTS,
PgCert Religion, Spirituality & Mental Health,
PgCert Special Psychopedagogy,
PgCert Autism & Asperger’s

Medi-Soc Mod Neurodivergence Title Pic 1The Medi-Social© Model of Neurodivergence Logo-Created by Romulus C.

The Medi-Social Model of Neurodivergence is an alternative to the prevalent Medical and Social models of Neurodivergence, applicable to the following, commonly accepted as, Neurodivergent conditions:

The Medi-Social Model of Neurodivergence could also provide a replacement to the imbalanced Psychiatric perspective of the Medical Model and the derailed Social Model Militantism, proposed by the “Neurodiversity Movement” and its ‘biodiversity’ dilettantism.

This Model would holistically and intersectionally consider Neurodivergent conditions in their Medical and Social complexity, with a realistic emphasis on understanding these conditions through also considering the invaluable lived-experience of individuals living with these conditions, and/or the accumulated co-participative experience of their families, caregivers.

I can boldly assert that the structural elements of a Medi-Social Model of Disability and Neurodivergence have always been present in what has been known as the Medical Model, which could have never existed without its Social aspects, proven by the well-known existence of Multidisciplinary Teams, mandated by legislation to safeguard each step of an individual’s journey through their Recovery.

A Medi-Social Model of Disability and Neurodivergence would open the possibility of exploring new and necessary horizons of how all participants in these multidisciplinary teams, such as the individuals themselves, their caregivers, their clinical team, their social worker team etc, could change the Recovery Pathway Dynamic from a Clinical-Team-dependant hierarchical, to a Multidisciplinary Co-participative/Intersectional.

A Medi-Social Model of Neurodivergence/Neurodiversity, an Introduction… (- II -)

[Rev.] Romulus Campan FDScMH (Forensic), LTh (Hons), CertEd, QTS,
PgCert Religion, Spirituality & Mental Health,
PgCert Special Psychopedagogy,
PgCert Autism & Asperger’s

This article is an expanded and revised version of my previous post, A Concerned Neurodivergent’s critique of Judy Singer’s “There’s a lot in a name… Diversity vs Divergence” article – I – …

I have only incidentally heard about Judy Singer, which is probably due to her self-acknowledged two-decade long absence, succinctly described as: “Returning to the field 20 years later”.

As succinctly described in her article, these motives seem to be complex, motivated mainly as it appears, by Dr Nancy Doyle’s choice of describing “People with Neurodiversity”, as being -in Singer’s own words- “an assortment of people with a range of conditions like Aspergers (sic), Autism, ADHD, Dyslexia, Dyspraxia, etc”.

I hope to correctly remember the author saying (in a tweet I cannot access anymore), that her article was meant as an “opening gambit” to be followed by more “moves”, mentioning also an openness to learning and dialogue and as one might subsequently assume, debate. Having read the article, I considered necessary to express the following concern: “with all due respect, but if ND is ever going to live up to its name, it has to move-on from having come to actually represent only a more or less autistic, loud minority, which has become exclusive by ignorance, of other Neurodivergent conditions…” and I must add, their various levels of severity.

The essence of Singer’s article perfectly overlaps with a development within the Neurodiversity “movement” I have been following for the past couple of years, which I perceive as a theoretical threat to a necessary progression of Neurodiversity from its oversimplified and absolutely inaccurate “biodiversity” origins, onto an umbrella concept for Neurodivergent conditions, as summarised in DANDA’s graphic representation.

 In an effort therefore, to reconcile the double existential divide and dichotomy caused by a lack of balance within the Medical/Clinical Model of Neurodivergence and the Social Model’s denialism, I am proposing what I consider a more objective perspective, which I would call The Medi-Social Model of Neurodivergence/Neurodiversity, applicable to basically all Neurodivergent conditions.

Having worked in forensic mental health for the past few years, I can boldly assert that the structural elements of a Medi-Social Model of Neurodivergence/Neurodiversity have always been present in what has been suggested as the Medical Model, which could have never existed without it’s Social aspects, richly proven by the well-known existence of the Multidisciplinary Teams mandated by legislation to be present at each step of an individual’s journey through their individualised Recovery Pathway.

However, a Medi-Social Model of Neurodivergence/Neurodiversity would open the possibility of exploring new and necessary horizons of how all participants in these multidisciplinary teams, such as the individuals themselves, their caregivers, their clinical team, their social worker team, could change the Recovery Pathway Dynamic from a Clinical Team dependant hierarchical to a more co-participative/intersectional. The proposed model would also represent a justified abandonment of what I perceive as a trend exemplified by Dr Doyle’s “Genius Within” (GW)
revised version of DANDA’s diagram:

Because unfortunately, well-meaning efforts to focus on the ‘good’, have tragically resulted in a complete loss of sight about the ‘bad’ and the ‘ugly’, clearly seen when comparing DANDA’s and GW’s diagrams, where the central, neurodiversity defining areas have migrated from concepts such as “Difficulties…, Poor…, Low…, Anxiety…” to “Evolution has created specialist thinkers, to bring a variety of expertise to humanity”.

I can’t do any better at this moment, than remember the religiously uplifting “blessed are the poor in spirit” and its agnostic translation “ignorance is bliss” …

Because any attempts to romanticise by avoidance, the consequences of being born with a structurally different brain, which translates into oftentimes insurmountable social integration difficulties, are no better than primarily psychiatric, exclusively medication-based approaches to such neurological differences.

And yes, I cautiously agree that most neurodivergent conditions exemplified in the diagrams are not psychiatric illnesses per se; ignoring however, the often-devastating effects these have on an individual’s overall physical and mental wellbeing, which cannot be addressed from a Social Model perspective only, is no less than gross negligence.

In an effort to clarify a vital segment of reassessing and restructuring the Neurodiversity narrative, I was forced to ask the following, probably uncomfortable question: “[…] Unfortunately, current efforts, well-meaning as they are, seem too much about an integrative sociology of lower dependency autism. When was last you heard e.g. Dyscalculia mentioned?”

Because I genuinely believe that a Neurodiversity concept and narrative which ignores its complex Neurodivergence architecture, is in danger of becoming useless and harmful, discrediting worldwide efforts to move away from this completely misunderstood “I came to the ND word from the Green Movement, […] the word Biodiversity…” onto my proposal’s integrated perspective of Neurodivergence, which understands the intrinsic clinical/medical, physiological and/or pathological aspects of Autism, AD(H)D, Autism, Dyslexia, Dyscalculia, Dyspraxia, Tourette Syndrome, etc, (the list being still debated), as integrated with the extrinsic correlations inevitable given by a neurodivergent’s inescapable social pertinence.

Beneath the surface, it appears that article author’s real problem seems to be associating “her” Neurodiversity, with Disability, or in her own words, “The problem with the expression “People with Neurodiversity” is that it turns Neurodiversity into the latest fashionable synonym for Disability” …

Reading this, it becomes hopefully clear that the danger of what I have several times called a “hijacked” and “derailed” Neurodiversity narrative is real, leaving not much doubt about a  deep-seated desire of a mostly high-functioning autistic and “autistic”, loud minority, to dissociate themselves from the less fashionable, disabling aspects of autism and all other neurodivergent conditions, by following a restrictively enforced set of agreed rules, reminiscent of vigilantism, e.g. language policing, disability terminology avoiding, “autism parent” abusing, etc…

Further analysing the article, everything seems to have taken a surreal turn when it read: “The role of the ‘NeuroDiversity Movement’ then is to be a federation of different Neurotribes […] I argue therefore that ND must remain ‘sacrosanct’, a universal truth that we can point to when insisting on the necessity of our existence.” (emphasis mine).

I do not remember, reading Silberman’s “Neurotribes”, that any of his intentions were anywhere close to Singer’s grandiose ideas that “the role of the Neurodiversity Movement is to unite all the people with simple neurological variants behind the same advocacy banner: i.e. the syndrome formerly known as Aspergers, ADD, ADHD, Dyslexia, Dyspraxia, Stuttering, etc.” (emphasis mine).

I do sincerely hope, that thinkers with a much more complex understanding of these conditions, with a scientific and lived-experience understanding of “Asperger’s, Dyslexia, ADD, ADHD, Dyspraxia, Stuttering etc”, will understand the discriminative reductionism resulting from redefining these oftentimes severely debilitating and disabling conditions, as “simple neurological variants”, moving away from what has become a questionable attempt by proponents of mainly social sciences, to unilaterally rewrite a neurodivergence narrative pioneered by illustrious figures of medical sciences…

To be continued…

https://www.geniuswithin.co.uk/blog/theres-a-lot-in-a-name-diversity-vs-divergence/

A Concerned Neurodivergent’s critique of Judy Singer’s “There’s a lot in a name… Diversity vs Divergence” article – I – …

I have only incidentally heard about Judy Singer, which is probably due to her two-decade long absence, which she succinctly describes as: “Returning to the field 20 years later”.

As rather erratically “clarified” in her article, these motives seem to be, using the least belligerent term which comes to my mind, complex, motivated mainly as it appears, by Dr Nancy Doyle’s choice of describing “People with Neurodiversity” as being -in Singer’s words- “an assortment of people with a range of conditions like Aspergers, Autism, ADHD, Dyslexia, Dyspraxia, etc.”

Singer herself, in a tweet I cannot access anymore, said that her article was meant as an “opening gambit” to be followed by more moves. She also mentioned to be open to learning and as one might assume, debating, which resulted in my following concern: “Judy, with all due respect, but if ND is ever going to live up to its name, it has to move on from having come to actually represent only a more or less autistic, but loud minority, which has become exclusive by ignorance, of other Neurodivergent conditions…” As a reply Singer condescendingly and literally sent me to go “read more…”

I myself moved, prompted by what I have perceived as a theoretical threat to a desirable progression of Neurodiversity from its “biodiversity” origins onto the emerging, umbrella concept for Neurodivergent conditions.

In an apparently futile effort to clarify a vital segment of reassessing and restructuring the Neurodiversity narrative, I asked her: “[…] Unfortunately, current efforts, well-meaning as they are, seem too much about an integrative sociology of lower dependency autism. When was last you heard e.g. Dyscalculia mentioned?” because I genuinely believe that a Neurodiversity concept and narrative which ignores its complex Neurodivergence architecture, is in danger of becoming a useless and harmful joke, discrediting worldwide efforts to move away from this illusory “I came to the ND word from the Green Movement, […] the word Biodiversity…” onto what Doyle’s “Genius Within” describes as “Passionate about developing talent and achieving success with ADHD, Autism, Dyslexia, Dyspraxia, Tourette Syndrome, Mental Health, and all neurodiverse conditions”.

As it turns out, Singer’s real problem seem to be associating “her” Neurodiversity, with Disability, or in her own veiled words, “The problem with the expression “People with Neurodiversity” is that it turns Neurodiversity into the latest fashionable synonym for Disability”.

Reading this, it becomes clear that the danger of what I have several times called a “hijacked” and “derailed” Neurodiversity narrative is real, leaving not much doubt about a  deep-seated desire of a mostly high-functioning autistic and “autistic”, loud minority, to dissociate themselves from the less fashionable, disabling aspects of autism and all other neurodivergent conditions, by following a restrictively enforced set of agreed rules, reminiscent of vigilantism, e.g. language policing, disability terminology avoiding, “autism parenting” abusing, etc…

However, what metaphorically made my spinal fluid boil and my left eye badly twitching were her following statements: “The role of the “NeuroDiversity Movement” then is to be a federation of different Neurotribes”, but even more the “I argue therefore that ND must remain “sacrosanct”, a universal truth that we can point to when insisting on the necessity of our existence.” (emphasis mine).

I do not remember at all, reading Silberman’s Neurotribes, that any of his intentions were anywhere close to Singer’s grandiose ideas that “the role of the Neurodiversity Movement is to unite all the people with simple neurological variants behind the same advocacy banner: i.e. the syndrome formerly known as Aspergers, ADD, ADHD, Dyslexia, Dyspraxia, Stuttering, etc.” (emphasis mine).

I do sincerely hope, that thinkers with a much more complex understanding of these conditions, with a scientific and lived experience understanding of the severely debilitating and disabling effects of Asperger’s, Dyslexia, ADD, ADHD, Dyspraxia, Stuttering etc, will be able to see beyond Singer’s unbelievable ignorance in calling these “simple neurological variants”.

And if anyone has any more doubts about the intentionally discriminative approach of this “sacrosanct” version of Neurodiversity, please read again and again and understand, that this derailed “Neurodiversity Movement” has no place for anyone not fitting the “simple neurological variant” criteria.

In conclusion, allow me to remind myself, that my Asperger’s, my Dyslexia, my Dyspraxia, my Dyscalculia, which haunted my school and further education years, which painfully continue to cripple so many aspects of my life, could NEVER be solved by any social adjustments.

Does anyone know what it feels like to be a middle-aged person, holding my hand out at any shop’s till, asking like a broken child the cashier to count the coins out of my hand, because I can’t? Because having Dyscalculia left my analytical mind disabled, unable to count one pound from coins having their sizes disproportionate of their values?

And there’s no cashier’s kind “social adjustment” capable of easing the howling rage inside my mind, for having been born this way…

To be continued…

https://www.geniuswithin.co.uk/blog/theres-a-lot-in-a-name-diversity-vs-divergence/

The Stockholm Syndrome Symptomatology of Neurodiversity Militantism

me 1I was diagnosed with Autism Spectrum Disorder (ASD) in June 2017. As I wrote in the “About…” tab of my blog, “Over 50 years of a rather odd life, came to a sudden realisation, with all the clicks and cogs falling to their right places.”

Little did I know at the time, that the sudden realisation was only the preamble of what is as I write, the crawling to a frightening light, of a child I can’t even remember, and whose only ‘happy’ memory is a set of painted wood blocks, neatly ordered in a slide-top box, taken out every day to became the same ‘castle’ in which no toy was ever planned to live, or play.

If I would have to give a name to the featured picture, it would be “Leave me alone”. I never liked being photographed, being looked at; probably because everyone expected me to look back, to show the same colloquial interest which never interested me.

I’ve never understood humans, the reasons why they kept asking stupid questions such as “what would you like to be when you grow up”, just to laugh themselves to urine when the five years old replied “Pensioner, because you don’t have to do anything, and the mailman brings you the money”. Mind you, I was raised by my maternal grandmother, savvy pensioner taking her grandson everywhere, mainly to the popular coffee parlours famous for their Italian expresso machines, dripping the golden bath for my -always at hand- thirsty sugar cubes.

I never had “friends”. My acquaintances could be anything and anyone, from my grandmother’s gossip team, my wooden blocks, collectible Gillette razor blade boxes, match boxes, my blind, talcum powder smelling masseurs (muscular atrophy), to the whole plethora of colleagues blessed or cursed to have met me.

Before being entirely absorbed in 2017 by the Neurodiversity “movement”, my life took a similar, dramatic self-discovery turn in 1990, when following a partly societal, partly family heirloom inherited, devastating guilt crisis, I had “my sins taken away by Jesus” and my civil liberties by a neo-evangelical church. The “love story” ended following nearly two decades of a genuinely successful international ministry, inclusive of two major academic degrees and two postgrads, radio, TV and conferencing.

My fondest memory of the time is a story by the manipulative “pastor” of the emotionally controlled congregation, about an Eastern European dictator, asked by a journalist how is it possible for the nation to adore him, while he basically took away all their rights? Apparently, the dictator asked for a living chicken and to the utter shock of the journalist, he plucked the agonising bird’s feathers clean. Having spread a handful of breadcrumbs on his boots, he put the poor bird down, which obnoxiously started to eat them. “You see?” the dictator said, “you can take away everything from your population, still they’ll mindlessly follow you as long as you give them enough to survive on.”

Keep this in mind…

Returning now to the reason for a title which may stir instinctive reactions I’m expectantly aware of, I remember in 2017 leaving my Autism assessor’s office with a maelstrom of emotions I did not expect, dragging behind myself the barely finished, mostly incoherently  mumbled reply to my diagnosing psychiatrist’s question, “How do you feel now, knowing what you felt all along?”

“Confused a bit…” I said, “both liberated and frightened…” because I did not want to tell her out of respect, that my first thought as I mentioned in my relevant post was “angry”, for all the reasons I describe there.

I was sitting in my car, trying to breathe, nearly crying, or maybe laughing as I usually do at funerals, trying to make sense of 54 years passed by, of a life weirdly writing itself like backwards with each new year.

At that time, I was well aware of Neurodiversity (ND) as an umbrella term for all neurodivergent conditions, but also as a “movement”, which started to ‘absorb’ me deeper and deeper, for all the good reasons I understood and identified with, absolutely in love with Silberman’s brilliant “Neurotribes”, the cosy fellowship of kindred spirits and high hopes to change the world for the better.

Another year of academic effort rewarded me by meeting autistic academic  Luke Beardon from whom I’ve learned that learning’s prime asset is critical thinking, at both its giving and receiving ends.

It was around that time, when I started looking at my autism with a receiving critical attitude, of questioning if self-acceptance and its projected extrapolation through the less and less “diverse and inclusive” Neurodiversity movement and some of its most “impetuous” proponents, is the right way forward.

I witnessed horrified and in utter dismay, mobs of self-proclaimed ND “advocates”, advocating nothing else but basest attitudes of hunting into silence perceived “dissidents” for taking themselves the liberty to think, having hijacked and mutilated much of what Neurodiversity would have been good for, oftentimes turning it into a lucrative merchandise, and a gathering ground for attention seeking individuals trying to force acceptance of their “valid” “selfDx”, so desperately necessary to stabilise the insecure reflection of themselves trembling together with the shallow social waters they are looking into.

Traveling for a while with the group, I more and more felt the unease and suspicious dread of a deja-vu which scarred what should have been the best two decades of my life.

I also met “the enemies”; scared, sometimes scarred autistic thinkers bravely unwilling to forfeit their liberty of thinking for belonging anywhere, exhausted yet hopeful mothers, fathers, brothers, sisters, grandmothers, carers of autistic children and adults, many angry and frustrated to have their words and thoughts twisted by self-proclaimed ND representatives, unable to understand which part of “severe autism” can’t these “inclusion and diversity” vigilantes understand?!

I also met the counter-hijackers, same sort of self-proclaimed experts, mostly of their hate and bitter dissatisfaction with life’s immutable unfairness, living of the margins of counter-arguing every shade of neurodiversity they could find, throwing out in an identically destructive frenzy, not only the “baby with the bath water” but the bathtub as well.

And then, I finally understood, my life’s twisted entanglement with a condition I tried beyond “accept” to love…

A “love triangle” sort of relationship with neurodevelopmental conditions which claimed a brilliant mind, with physical conditions which claimed for daily torment my talented body, shaping who I am, hardly ever getting to know whom I should or could have been, or who my destroyed by alcohol, neurodivergent asocial father could have been, or who my benzodiazepines dependent neurodivergent mother could have been, or who my hero partner of 26 years, severely neurodivergent wife could have been, fiercely doing all I can for my neurodivergent children to become the best they could be …

I realised that I have desperately tried to consciously legitimise the subconscious, Stockholm Syndrome attachment to my Autism, to make all the suffering it caused a “love story”, forgetting that from Romeo and Juliet to Hiller’s Love Story, death and suffering rip afresh the deep wounds and scars of all such stories.

I sadly understood that, exactly as in the trading of my liberty in exchange for an only hoped religious absolution from guilt, my efforts to “love” my autism were nothing else but desperate attempts to transform accept and tolerance, into romance…

Wandering deeper, I must ask the hate-magnet question: “Is the derailed part of the Neurodiversity “movement”, with its priestesses and priests preaching and demanding acceptance, while ostracising anyone and all questioning them and/or their motives, their agenda and their Autism narrative representation validity, a real example of a double Stockholm Syndrome, where autistic individuals desperately want to love something which has probably taken away more from their lives than what it gave them, being further afraid to think and speak for themselves, for fear of having the (remember?) breadcrumbs of an illusion of belonging taken away from them”?

The reason I’m extrapolating my own existential struggle, is having worked with, taught with and been with diagnosed autistics clearly going through such soulquakes more or less openly, yet afraid to break free from this double attachment?!

I accept myself as disabled.

I “love” myself in spite of my disabilities.

But no one should expect me to love my disabilities.

I tolerate my disabilities trying to rearrange my life around them, in order to allow myself the space to live, create and care; for as long as I can.

So, what now?

I know that both the Neurodiversity side and the Severe Autism and Autism Parenting side have at their cores brilliant individuals surrounded by even more brilliant individuals, tired of being misrepresented by abusive mobs of questionable entities, diagnosed or not, causing more and more harm to a silent, often unseen majority.

Isn’t it high-time to bridge the shameful divide with a dialogue and alliance of interests already thought of, necessary to advance a unified agenda of making living with autism, a life beyond mere survival?

How? By listening instead of judging and by supporting instead of policing.

Because I can’t love autism, but I can respect and care about us.

There should be more to our neurodivergent lives than breadcrumbs…

Restructuring the Autism Spectrum Disorder Narrative around the Core Symptomatology of Asperger’s Syndrome and High Functioning Autism

Museo_del_Prado_-_Goya_-_Caprichos_-_No._43_-_El_sueño_de_la_razon_produce_monstruos

[Rev.] Romulus Campan FDScMH, LTh(Hons), CertEd, QTS,
PgCert Religion, Spirituality & Mental Health
PgCert Special Psychopedagogy,
PgCert Autism & Asperger’s

“The theoretical understanding of the world, which is the aim of philosophy, is not a matter of great practical importance to animals, or to savages, or even to most civilised men”.
Bertrand Russell

Keeping in mind my Theoretical Philosophy positional disclaimer, I have arrived at the point of my scientific inquiries, where, theories of intersecting dimensional planes aside, I must allow a superfluity eradicating convergence of objectivity in the Autism narrative, which should dethrone impostor monsters, born as painted by Goya, from the minds asleep of scientists, and subsequent masses of dilettantes.
However, in all its simplicity, the Autism narrative’s only problem, is the underlying conflict fuelled by what has become known as Learning ≠ Intellectual Disability (e.g. Dawn, Fragile X syndrome, etc.), formerly Mental Retardation. I have deliberately used the non-equal sign, as a form of silent, dignified and resigned protest, against the frustratingly careless use of Learning Disabilities (rebranded now as Learning Difficulties) which shouldn’t encompass more than reading disabilities, written language disabilities, and mathematical disabilities such as Dyslexia, Dyscalculia, Dysgraphia, also Dyspraxia which has a profound impact on perception, therefore all afore enumerated.
I do respectfully understand and acknowledge why it may be emotionally less intrusive to use Learning Disabilities instead of the Mental Retardation reminiscent Intellectual Disabilities, however, subjective rebranding in the name of political correctness does never change objective inherence. And obviously, this isn’t influenced at all by the fact that Intellectual Disabilities could co-occur with Learning Disabilities, with the former having at the core a genetic or traumatic incapacitation of the brain to process/convey information, while the later are the brain’s non-typical modalities of processing/conveying information, caused by its structural and functional differences.
The Autism narrative therefore, must once and for all, separately consider Intellectual Disabilities, regardless of common identifiables, present at the time being, in what is reluctantly acknowledged as Low Functioning Autism, or more recently, “courtesy” of DSM 5, as Severity Levels 3/2 of ASD.
Now as a tangent thought, I must mention my genuine concern that this ‘reluctance’ has morphed unfortunately in the contemporaneous trend called “Neurodiversity” which has long left its Neurodivergence gathering meaning, home for ASD, Dyslexia, Dyspraxia, Tourette’s etc., having mutated from initially a High Functioning, Asperger’s Autism forum, into a “HF/Asperger’s Autism plus…” stage, for an alarmingly increasing number of “self-ID(Dx) autistic”, more probably narcissistic individuals, unhappy of their probable Personality Disorder traits. These share the stage with the “thinking for myself may hurt + OMG, OMG, you’re so wrong…” vigilante crowd, the “stuck in-there, too proud to admit this is wrong” rather silent minority, and the “more-or-less personal, but good business” opportunists.
Returning briefly to DSM-5, I certainly appreciate the following clarification/condition:
“E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level” (emphasis mine). However, the statement’s last sentence, seems in my opinion to rather seriously muddle the already dark waters of practically understanding what the expected level of general development would be, in case of Intellectual Disability.
On a further thought, comparing symptoms of ID/IDD with symptoms of ASD, the similarities are beyond a reasonable horizon of reassurance that the two conditions wouldn’t be misdiagnosed for each other. Because if anyone is naïve enough to look for repetitive behaviours and/or communication deficits as some sort of failproof sign of ASD, let them be reminded that stereotyped, repetitive behaviours are also typical for passive traumatic experiences such as external stimuli deprivation, just to mention one…
Without even attempting to explain beyond theoretical philosophy the reasons for my suggestion, I propose as a valid and beneficial alternative to the present epistemo-semantic chaos, that the Autism Spectrum should selectively integrate what has been previously known as Asperger’s Syndrome and High Functioning Autism, hoping that Autism research would resume the vital dialogue of identifying specialised diagnostic patterns for the core aspects of both.
Unfortunately, otherwise, the very real and oftentimes devastating, Intellectual Disability or Intellectual-Disability-identical criteria, will continue to overshadow and therefore ignore the maybe less visible but drastically life shortening symptoms of Autism.

Reflections on the Psychopathology of Demand Rejection and Avoidance

1200px-Mud_Volcano_in_Gobustan_01[1]Honouring a long-due promise to Demand Avoidance researcher Richard Woods @Richard_Autism I will attempt to summarise a personal perspective of the psychopathology of Demand Rejection and Avoidance, conscious of the topic’s vast scientific interdisciplinarity, muddled unfortunately by rather recent research derails, causing unnecessary confusion and delays in therapeutically addressing valid psychotherapeutic necessities.

In this short article I will deliberately avoid citing/quoting any post Newson “P/E/DA” researchers, because of what I perceive as bias in their motives to establish a stand-alone diagnostic of “P/E/DA”, separate from the already existent Kanner’s and Asperger’s Autism Spectrum subcategories.

I will use instead as a lose structural frame, citations and my own personal interpretation of these citations on the topic of PDA from the National Autistic Society’s (NAS) webpage which under the “What is pathological demand avoidance?” subtitle, lists the following:

-“(PDA) is increasingly, but not universally, accepted as a behaviour profile that is seen in some individuals on the autism spectrum. (emphasis mine)

 -“This demand avoidant behaviour is rooted in an anxiety-based need to be in control.(emphasis mine)

-“the demand avoidant profile has been found to be relatively uncommon“. (emphasis mine)

-“People with a demand avoidant profile can appear to have better social understanding and communication skills than others on the autism spectrum and are often able to use this to their advantage.(emphasis mine)

-“uses social strategies as part of avoidance, eg distracting, giving excuses” (emphasis mine)

-“appears comfortable in role play and pretence” (emphasis mine)

-“Parents very often use the term ‘manipulative’ to describe this aspect of their child’s behaviour and will comment on how it seems to be their greatest skill(emphasis mine)

It doesn’t require an exceedingly vast (necessary however) mental health experience to understand and notice that nearly everything mentioned in the citations above, and also much of the source material, seems to extrapolate into a rather clear anamnesis showing similarities with subcategories of Personality Disorders.

There is a generally recognised divide between the Neurodevelopmental Autistic Spectrum Conditions which have a Genetic background, and the Psychopathological Personality Disorders which seem to have a Traumatic background, each with very much different approaches to what’s best in providing support to individuals diagnosed with these conditions.

Further, the NAS material states under “Guidelines for parents” that “tried and tested strategies used with children who have other autism profiles are not effective for their child with a demand avoidant profile. This is because people with this profile need a less directive and more flexible approach than others on the autism spectrum” which seems to me fairly similar to the approach of the Dialectical Behaviour Therapy, designed to help individuals with Personality Disorders. This in my opinion seems to be also supported in the advice by the same source that the “use of structured teaching methods, which can be useful for people with other autistic profiles if individual needs have been considered, are often much less helpful for people with a demand avoidant profile and need considerable adaptation. People with this profile don’t usually respond to structure and routine. An indirect style of negotiation is more likely to lead to them feeling the control over their learning that they need.” (emphasis mine) Again, in my opinion this appears to be in direct contradiction with what the NAS seems to be emphasising that “a person with PDA does not make a deliberate choice to not comply and they can’t overcome their need to be in control”, because “feeling the control”, negotiating and responding in an expected manner to this, does to a significant extent imply the repeated use of “deliberate” choices, not to mention the sharp contrast of this behavioural profile with the clinically proven stability provided to autistic individuals by “structure and routine”.

In conclusion, I am very much concerned that exactly at a time when the future of both Kanner’s and Asperger’s Autism research have been jeopardised by historical blunders caused by arbitrary decisions made by the respective APA and the WHO to dismiss decades of research into the differences between the two major Autism subgroups in their DSM-5 and ICD-11, scientifically questionable research is being used to include -in my opinion- primarily mental health conditions into a neurodevelopmental category.

Finally, I am genuinely surprised and deeply disappointed by the @Autism NAS’s indulgent participation in this far from clarified and at the moment highly controversial subject. Their carelessness in making unclear statements such as “PDA (pathological demand avoidance) is a behaviour profile within the autism spectrum” have already given grounds to some groups such as “The Jigsaw Tree” to claim that “Pathological Demand Avoidance (PDA) is now recognised as an Autism Spectrum Condition by the National Autistic Society.” I’m curious if the NAS @Autism would confirm this conclusion…

Maybe researchers should consider another path as suggested by Rebecca McElroy whom has noticed that “PDA describes a child who is primarily led by a need to avoid demands and control situations, struggles with social communication and relationships. However, these exact same characteristics could equally be used to describe a child with disordered attachment (NICE, 2015).”

Because in my opinion, the major difference between the Autism Spectrum and the Pathologic Demand Avoidance is that while the first is Neurodevelopmental the second is Pathological.

Ref: NICE (2015). Children’s attachment: Attachment in children and young people who are adopted from care, in care or at high risk of going into care. Clinical guideline, first draft.

Disclaimer: The interpretations and re-contextualised use of the citations from the indicated NAS website are entirely my own, and therefore do not represent in any form the official position of the NAS concerning PDA.