Tag Archives: Autistic Spectrum

“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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Neurodiversity, or “The Theory and Practice of Oligarchical Collectivism” -Proposing the “Medi-Social© Model of Disability and Neurodivergence” III-

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One of writing’s most complex hurdles is leaving one’s “body” to immerse in the dream within dream of creating a structure for a world somewhat different than the original.

In the dystopian nightmare created by Orwell, Emmanuel Goldstein’s “book” becomes the embodiment of Winston’s hope that his participatory complicity in changing the past to suit a power-dependent, fluid future, will be forgiven, first of all by his own, desperate, depleted, sick, hungry and frightened self…

History has proven over and over again, that “Ignorance is Strength”; that the more “society” needs to ascend to a higher level of “consciousness” the easiest way is through what has become known as “purges”, or the “natural selection through the survival of the fittest”. This is what binds together Thomas Malthus’ theory of passive purge of the weak and vulnerable and Mao Zedong, architect of the murderous “cultural revolution” purge. The “fittest” will decide the means through which the less fortunate may be left, or helped to remain silent…

For some time now, the cult like “neurodiversity movement” has been going through a desperate process of finding any meaning in Singer’s frankensteinian, biodiversity inspired monstrosity. Waves upon waves of more or less well-meaning scientists of mostly non-medical sciences, ridden by more or less derailed individuals and their cohorts, are competing in a sinister race to purge a past they neither understand, nor desire to understand, from anything standing in their way to re-build something for which they have no plans whatsoever…

For some yet cloud shrouded reason, the #NDcult has chosen Autism as their main re-constructionist experiment, probably for the simple, utilitarian reason of being a still unknown disorder, having nevertheless the attention of a spotlight large enough to illuminate their narcissistic egos. And to ensure that ignorance is being further strengthened, they have ever since remembered to pay lip service to other dyslexia, dyspraxia and neurodivergent disorders, relabeling them as evolutionary achievements, “simple variations” of our brains.

As for the “what shall we do with the severe autism part”, the #NDcult has re-branded everything and anything ill-fitting their “geek syndrome”, as comorbidities to be dealt with by the medical professionals ostracised by neurodiversity sociology’s relentless “de-medicalising” and “de-pathologising” purges. Parents and carers of non-geek Autistic individuals have also been targeted for every politically incorrect attempt to express their frustration, pain and desire for finding scientifically valid treatments for their loved ones, being trampled in the mud of the vilest sub-human abuse.

In a recent tweet, @stevesilberman made valiant proof of why neither investigative journalism, nor a career in law should lead the way in shaping the future for millions of people with Autism worldwide. Because if he really meant writing, that “This whole thing is one of the most powerful statements of what ‘neurodiversity’ really means” as an introduction to Tay­lor-Park­er’s following idea, neither of them has any idea of what an IQ 30 means:

“Neu­ro­di­ver­si­ty isn’t an idea whose use­ful­ness is lim­it­ed to peo­ple who are “high func­tion­ing” or “just quirky” because it inher­ent­ly looks at peo­ple who will have exten­sive, expen­sive sup­port needs for the fore­see­able future and asks how we can help these peo­ple build the best pos­si­ble lives for them­selves. Neu­ro­di­ver­si­ty looks to every idea, tool, and prac­ti­cal solu­tion it can lay hands on to answer the ques­tion of how to have a good life with an IQ of 30, exec­u­tive func­tion­ing dif­fi­cul­ties, schiz­o­phre­nia, no ver­bal speech, or all of the above. Where med­i­cine is stumped, and the peo­ple affect­ed may not even want a “cure,” neu­ro­di­ver­si­ty draws heav­i­ly on the social mod­el of dis­abil­i­ty to offer some­thing unique: hope”.

To clarify what an IQ 30 really means, allow me to use as an example the details provided in the former DSM 4 TR:

“318.1 Severe Mental Retardation: IQ level 20-25 to 35-40 (accounts for 3-4% of retarded population). The group with Severe Mental Retardation constitutes 3%-4%of individuals with Mental Retardation. During the early childhood years, they acquire little or no communication speech. During the school-age period, they may learn to talk and can be trained in elementary self-care skills. They profit to only a limited extent from instruction in pre-academic subjects, such as familiarity with the alphabet and simple counting, but can master skills such as learning slight reading of some “survival” words. In their adult years, they may be able to perform simple tasks in closely supervised settings. Most adapt well to life in the community, in group homes or with their families, unless they have an associated handicap that requires specialized nursing or other care. (emphasis mine.)

May I ask anyone for that matter, which part of this DSM quote would offer any incentive for someone to believe that individuals living on this severe end of the Autism Spectrum, could ever “build the best pos­si­ble lives for them­selves”? Because “closely supervised settings” have little do with either autonomy or independence! And why would anyone want a severely disabled, highly dependent individual to build such lives for themselves, when the first call should be the warmth and dedication of their own families to help and assist them, except for when that would be practically impossible? Unfortunately, submitting the article to a simple search for words such as “family/families” returned a disappointing “no results”. However, reading the article I was shocked to find the opposite of what a family should stand for, which is “filicide”, “the deliberate act of a parent killing their own child” …

I am not going to apologise for asking, but what sort of mentality would drive anyone to write an entire article where the only reference to family is a concept on the criminal opposite of what a family should be?

Indeed, as suspected in the beginning, the strength of “neurodiversity” as a “movement”, seems to be its obnoxious ignorance summarised in: “accept the fact that med­i­cine doesn’t have an answer to neu­ro­log­i­cal vari­ety” and most important, “accept­ing that peo­ple are peo­ple, and, love it, hate it, or feel ambiva­lent about it, there is no cure today.”

Is this the “future” of “gold” so fiercely advocated by neurodiversity, the fatalistic view that if “there is no cure today” there won’t be one tomorrow? Is this the reason why neurodiversity is so hell-bent in “de-medicalising” and “de-pathologising” autism, campaigning against vital, life saving medical research about the complex neuro-physiopathology of Autism and its comorbidities, so brazenly called “quackery” by some neurodiversity proponents?

Let me ask in a non-delegated, but implicated way, what shall we do, all clinical professionals from countless fields of medical, health and care sciences? Throw away our passion for being better providers, to the best of our capabilities, of anything and everything could make the lives of people with autism, dyslexia, dyspraxia, Tourette’s, epilepsy, seizures and many other aspects of probably the same, most complex neurodevelopmental disorder, and embrace “neurodiversity” with its utter misunderstanding of the social model of disability? As I have said many times, myself and all clinical professionals I know, work closely together with our dedicated social work colleagues, in multi-disciplinary teams sometimes desperately trying to ensure equitable opportunities to everyone in our care. And we are far from perfect, but I have never heard any of my clinical colleagues talking about “de-socialising” our teams, or our social work colleagues about “de-clinicalising” them?

No, not by any chance…

Returning to my title, I must reiterate my surprise to have realised that the neurodiversity movement is indeed collectivism, with a structure of unquestionable allegiance to its oligarchically maintained “ideology”, which in their own words rests on two major principles. The 1st principle is “Every­one gets the same basic rights”, the 2nd being “There are no excep­tions for label, IQ, or degree of sup­port needs”. By the way, please don’t approach me with diversions such us “why haven’t I read everything in context”! I did, again and again, just to have become unwilling to suffer any longer the inflicted intellectual distress…

I will conclude with another statement which seems to be the essence of what neurodiversity is, and its effects on a society maybe expecting more help instead of even more suffering:

“Neu­ro­di­ver­si­ty is an idea for strong peo­ple, as it bites and claws at every­one who embraces it.”

And I can confirm with my own life and experience, that “neurodiversity” and its cult-like movement has left me with nothing but bite-marks and claw-scars since the day I “embraced” it.

Because if one’s strength is their ignorance, their peace will be a war against themselves and ultimately others.

Remember nevertheless, that ultimately, the real victims of all wars are not the strong, but the vulnerable…

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.

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

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[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…)