Category Archives: High Functioning Autism

“Autism Spectrum Dependency Classification System v 1.0” -proposal-

[Rev.] Romulus Campan, FDScMH (Forensic), LTh (Hons), CertEd, QTS,
PgCert Religion, Spirituality & Mental Health,
PgCert Special Psychopedagogy,
PgCert Autism & Asperger’s
Chair, Disability & Neurodivergence Staff Network – BSMHFT

Previous attempts to classify the Autism Spectrum (AS), failed to understand the ‘trees’ within the ‘forest’ of unknown dimensions, which has become generally known as Autism Spectrum Disorders.

I am unwilling to concede ‘disorders’ to ‘conditions’ simply because after countless episodes of bullying and harassment from mostly ignorantly unqualified individuals and groups, in this case having found in their “autism activism” a venting platform for complex seemingly psychological issues, I have decided to initiate and maintain liaison only with academically and/or experientially qualified entities, willing to participate in existing efforts to rescue and restore the Autism narrative from the chaos caused by such incompetent “movements” and individuals, the vast majority of whom have spawned from Judy Singer’s disastrous, “NeuroDiversity” brain-child, born as an “idea” explained by the book’s Amazon abstract as follows:

“The word itself was just one of many ideas in this work, her 1998 Honours thesis, a pioneering sociological work that mapped out the emergence of a new category of disability that, till then, had no name.” (italics mine)

Surprisingly, however, as I have detailed in a previous essay, Singer’s careless inference with the medical field mutated into an increasingly conflicted understanding of disability, revealed in a recent article as “The problem with the expression “People with Neurodiversity” is that it turns Neurodiversity into the latest fashionable synonym for Disability.”

The necessity to re-classify the AS should be obvious to all ‘navigators’ of a “system” which could be best depicted as a beach playground where infantile participants more and more aggressively, try to destroy and rebuild their newer and newer sand-castles of a derailed activism, fortunately washed away by oftentimes feeble, but nevertheless professionally and/or experientially much more accurate attempts to defend the Autism narrative from becoming another defunct sociological experiment.

The real reason in my opinion for this constant threat for the wellbeing of millions of autistic individuals and their families worldwide, including my own, is the collapse of observational behaviourism as exclusive instrument in understanding Autism from its ontogenesis throughout its lifetime progression, having left behind a Medi-Social Model identifiable void, where oftentimes hazardous and dangerous psychiatric interventions are being argued against by an equally hazardous reactivist revisionism, frightened apparently that “as long as autism – which is not a mental ill-health condition – remains in the psychiatric diagnostic manuals, there will continue to be those who use this to justify their attempts to find a cure.” (italics mine) (Chown & Leatherland, 2018).

I cannot, in all honesty, understand how and why would 25 autistic individuals, many of whom academics, be afraid that millions of individuals with autism, living themselves, their families and/or care environments under the constant threat of self-harm, wandering and uncontrollable violence, would be offered a treatment, a cure?

I have developed the Autism Spectrum Dependency Classification System, as a response-proposal against the confusions caused by the changes in the past years to the two, main disease categorisation systems, the DSM and the ICD, also the chaos in the less formal use of “functionality-based labels”, the now literally demonised HFA or High-Functioning Autism and LFA or Low-Functioning Autism.

As I have already hinted throughout my social-media presence, I consider dependency the most practical means of conveying the level of functional autonomy of an Autistic -or any other- individual, integrated with a simple, universally applicable sub-categorisation system, by which dependency is in direct proportion with the identified comorbid symptoms, as an individualised, non-numerical quotient of support needed for the maximum achievable autonomy.

By using the concept of “comorbid symptoms” I acknowledge Autism as a monolithic disorder featuring the below explained intellectual/mental, neurodevelopmental, physical and mental-health/psychiatric conditions not as independent co-morbidities (regardless of their also non-autistic existence), but as comorbid symptoms sharing origins simultaneously or developmentally with their Autism root.

The following codes have been used:

ID/MR – Intellectual Disability / Mental Retardation

LD – Learning Disabilities: Dyslexia, Dyspraxia, Dyscalculia, Visual Stress Syndrome, SPD (Sensory Processing Disorders), Tourette’s Syndrome, etc.

PHD – Physical Disabilities (observable and/or non-observable): Motor-functional (Fibromyalgia, CFS, Spinal Disorders, MS, etc), Diabetes, Metabolic Syndrome, etc.

MHD – Mental Health Disabilities: Clinical Anxiety & Depression, B/EUPD, Pathologic Demand Avoidance, etc.

ASD Dependency Cat System

I am publishing this first version of my proposal, relying in all honesty on my personal, academic and professional integrity in regard to having created this system without any deliberate intention to copy or otherwise unethically inspire from anyone else’s previously published thoughts or ideas. Should the reader have any questions or concerns about this, I would respectfully appreciate being informed about it, to address any issue as soon as possible.

This initial proposal version wishes to become a collaborative effort with -as previously mentioned-academically and/or experientially qualified peers. Should you be interested in collaborating, please DM me at https://twitter.com/Rev_Rom_ASD, keeping in mind that I reserve myself the right to extend any further collaborative invitations.

 

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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…)

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/

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.

The Cognitive-Behavioural Interpretative Isolationism of Intellectually Proficient Kanner’s & Asperger’s Autism (IPKAA)© Part 3 – The Myth of “Weak Central Coherence”

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Part 3 – The Myth of “Weak Central Coherence”

(Rev.) Romulus Campan
FdScMH, LTh (Hons), CertEd, QTS,
PgCert Special Psychopedagogy, PgCert Autism & Asperger’s

‘Frith (1989) attempted to sketch out the preliminary theory that one deep underlying cognitive deficit in autism has to do with a lack of coherence. In other words, autistic people lack the drive to pull information together into overall meaning.’ Hill (2004)

Hill seems to continue Frith’s rather hidden mentioning of the fact that while she proposes her theory as a ‘deep underlying deficit’, a door has been left open to a ‘lack of drive’ which implies a selective-volitional aspect, with what she proposes as an ‘information processing style, rather than a deficit’.
The coherence theory postulates that incoming information is usually processed in its context. Now, while acknowledging that oftentimes communicated information is meant to be processed in some context, I don’t believe that noticing ‘needles in the haystack’ while paying no interest whatsoever to the haystack’s any aspect, should be considered a deficit, but rather a valuable control asset, through which the flow of information can be monitored for systemic accuracy. And the fact that autistics may decide to ignore the context in order to gain through focus, a deeper understanding of the detail which flagged their attention, does not substantiate that contextual coherence is the required norm, but as Hill suggests, a ‘cognitive style’, which no autistic should be expected to justify, an even less to change.
I am also a theologian. This means that I was trained, and apparently excelled in interpreting textual and contextual details way beyond the newspaper reading level. And since theology should be first of all philosophy, I was given the chance to observe and contemplate, also judge and analyse thoughts hidden away, sometimes even to their writers.
Now if I would take Hill’s above quoted text, and gaze upon it just superficially, but with a rather merciless analytical rigor, I should note the following about “autism”:
-Autistic people suffer from a deep underlying (basic/fundamental) cognitive deficiency, which is lack of coherence, leaving them without the “drive” (ability/willingness/capacity?) to see/understand meaning in scattered fragments of information.
Unfortunately, “thanks” to the unmandated vigilantism of a way too noisy herd of dilettantes, whom mostly out of genuine, however misplaced concern have come to oftentimes falsely represent the entire intellectually proficient Kanner’s and Asperger’s autism (IPKAA) community, autistics without cognitively impairing intellectual deficiencies/disabilities have been left stranded at the mercies of a mercilessly mercantile “healthcare industry”, for whom the daily torture of having ALL our senses tortured, our personal space assaulted, our meticulousness abused, our silence raped and our solitude violated, means nothing because we have degrees and jobs…
So, here we are, probably the most vulnerable and exposed of us, trying to convince an already biased world that there’s no such “thing” as “simply autism”, that the Autistic Spectrum has two, fundamental categories, the Intellectually Proficient and the Intellectually Deficient, fact which shouldn’t be tampered with by semantic militias resembling more and more to editors of 1984’s Newspeak. Proficiency and Deficiency are existential opposites present everywhere from our vitamin D synthesising capabilities to our intellectual capabilities and shouldn’t be subject to any thoughtless political correctness. As most of the well-meaning, dedicated and yes, oftentimes heroic carers of intellectually deficient autistic individuals expect that those they love and care for will be given assistance as required by their specific needs, we, intellectually proficient autistic individuals expect to be listened to and assisted as required by our specific needs.
I hope to be mistaken when I speculate that the reason why the profiteering “healthcare” industry has successfully manoeuvred the not so neutral DSM and ICD into practically grinding to a halt decades of extremely promising research into High-Functioning and Asperger’s Autism by obnoxiously dropping Asperger’s as a subcategory, is the fear of having to listen to the scientifically and experientially valid opinion of a new generation of extremely capable autistic academics, diametrically opposed to the reductionist and generalising, clinically flawed stereotypes by which it’s cheaper to provide helmets to intellectually deficient, self-harming autistics, than answers to intellectually proficient, self-harming autistics.

-Frith, U. (1989). Autism: explaining the enigma. Oxford: Blackwell
-Hill, E. L. (2004). Executive dysfunction in autism. TRENDS in Cognitive Sciences Vol.8 No.1, January 2004, 26 http://www.ucd.ie/artspgs/langimp/autismexecdysf.pdf

(to be continued…)