Category Archives: Autism

[Rev.] or the Jew behind the brackets …

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

Not all real-life stories have a beginning; especially those born from echoes of generational suffering and pain.

It hurts endlessly and helplessly, running from echoes of hope-lost parents’ and grandparents’ tears, loving me, hating me, mourning me ahead of my escape from the same pain and suffering generating the screams of my untimely beginnings.

I never understood until today, the reason for carefully picking the fluffs scattered all over my blanket and eating them; I know now, it was the insolence of roughly round little objects impossible to integrate with the rectangular fold of my crib’s side covering blanket, neither white nor blue…

They were tasteless, oddly textured, eaten nevertheless by a weird little boy more disturbed to sleep by the unfitting randomness of an old the blanket’s fluffs, then by the TV sound of some program I wasn’t supposed to see in my parents’ living/bedroom…

A few decades later, waking up in a bed I didn’t at all plan before getting drunk the evening before, desperately understanding that no shower could wash down a pang of guilt I never felt before, I remembered the religious pamphlet someone threw under the door of my shared, four-bed nurse-hostel.

The message was simple: “Cast your burdens onto Jesus, he’ll carry them for you”. Remembering from my Catholic altar-boy years that praying is getting on your knees and talking to an unseen deity, I threw myself by the side of my bed and cried my heart and burdens out onto this Jesus, probably the first time in my life until then, when I was able to have a meaningful “conversation” with someone I called “God” …

“God, if you exist and hear me, I desperately need your help…”

And I went on and on calling God, Jesus, the Father, the Holy Spirit/Ghost, the Holy Trinity, anyone and everyone I hoped might have listened.

You don’t need too much psychotherapeutic training to know how honest tears and words of acknowledgment can alter the dynamics of hopelessness. That de-traumatizing experience became an anchor so deep into my life’s timeline, that it transformed it from linear into circular, around a newfound religious dedication.

One must remember that just some weeks before my drunken nightmare my uncle called, to share a family secret so deep, that it emerged only after my maternal grandmother’s death. You see, I was told that we were Jewish; suddenly, at that moment, a murky world of stories meant to cover the truth about our roots, fell apart, with the real stories of what truly happened unraveling themselves still, to this day. But that’s for another chapter…

A few more years -and three children- later, I started my formal, five years Licentiate in Theology university training, which forever changed my spiritual landscape. Because against all hopes and plans to become a supercharged Minister of the Word, exposure to the rigors of academic research, Hebrew, Greek, Latin and Systematic Theology forced this student to allow mathematical-precision analysis and logic, into the world of “simple” faith. The road to understanding the derailment and hijacking of a genuinely Jewish, messianic sect flocking around the hopes to see the newest prophet preaching another dreamed miracle of deliverance, in this case from the Roman oppression, was long.

Having lost in the first year of my theological seminary, the twins we prayed for, had a cataclysmic effect on my belief in any form of love from the God I was training to serve; but I marched on “in the footsteps of Jesus”.

I became a regional missionary for a Hungarian Protestant denomination, an ordained minister of the sacraments through an international ministry and Eastern European representative for a non-denominational organization promoting and researching a Christian scientific, creationist worldview. My/our TV and radio programs were broadcast all over the world by religious and secular stations, being invited in Europe and the US by churches, theological seminaries, universities and schools to teach, present and debate on such subjects.

I previously mentioned “simple” because and against opposing opinions, faith is a continuous exercise of accepting something no one has ever proved, closely followed by another exercise, that of denying literally the obvious, what anyone could experientially prove.

I believe therefore that faith is an exercise of denial, self-inflicted on an individual or mass level, in order to maintain a perpetual pseudo-reality, in face of an experientially obvious one.

Realization wasn’t easy; going back and forth between the certitude bringing doubt, having to check for myself everything the Apostles claimed, and the guilt-ridden doubt of having become an apostate, condemned to burn for eternity in a lake of fire.

Because contrary to popular belief, Christianity is a religion of “love” for the surprisingly simple-minded majority only, living a carefully constructed denial of selectively placing their spiritual desperation in the illusion of a “love” to be found in far less verses, than the threats of eternal damnation from their “son of David, son of God” …

You see, Christianity is supposed to be the finalisation/fulfillment of Judaism through a once and for all sacrifice of David’s heir. At a closer look, however, Judaism, the religion of a deity redeeming his people through vicarious sacrifices of animals by a dedicated priesthood to act on behalf of Israel, has been taken over and de-judaized, to suit the imperialistic agendas of succeeding conquerors beginning with Constantine.

Nevertheless, and regardless of all efforts by the New Testament writers, their Jesus character’s ancestry doesn’t match the rigorous expectations set out in the Jewish major prophets, causing, therefore, the ab-ovo collapse of the whole system.

However still, I have been left an agnostic minister, with the moral responsibility to care for every evil-hating soul, which is ultimately the only requirement of Judaism, in a nutshell…

I declined around 2009 to continue being the Eastern European representative/director of the aforementioned international creationist ministry, having built an effective regional representation involving religious and secular universities, television and radio programs, many still broadcast around the world to this day. The reason was simple; I find it intellectually, morally and ethically impossible to promote and defend, anything logically and/or rationally untenable.

I continued as a government translator/interpreter and a qualified teacher, having specialised over the years in special Psychopedagogy – Defectology, a postgraduate training giving skills in teaching children/adults with innate or acquired Neurological/Sensory disorders.

A very important part of my professional duties was a project I initiated and carried out over several years, designed to raise awareness of anti-Semitism and about the Holocaust, through visits organised to the Budapest Holocaust Memorial, located in the former Pava Street Synagogue. However, by the end of 2009, we arrived as a family at the point where we couldn’t afford the rent previously affordable through my ministry support.

This is how by mid-2010 I became the 24/7 carer and personal assistant of a middle-aged, British gentleman with hemiplegia; away from my family until 2014, relearning and applying the fundamentals of care from a clinical, social and psychological perspective, having to rely sometimes on nothing less than my combat medic experience for organising life moments running away and returning/revolving around a life forever changed by a massive stroke.

Fully reuniting in 2014 with my family raised the question of spirituality, of living our Jewish heritage in a community. I met an amazing young Rabbi, who rekindled the hope of continuing what we so much loved with our South-East Hungarian Synagogue Fellowship.

In vain as it turned out because the U.K.’s rabbinical Council decided that our papers aren’t up to their expectations of orthodoxy, and our Jewishness isn’t the same as “theirs”, expecting from us to basically undergo a reconversion procedure…

I’m still hurting, even after five years, to be told that I have to prove my Jewishness either by producing original ancestry papers or by reconversion. It still feels like what the Nazis wanted by chasing and scattering our family all over Romania, burning every trace of our Jewish heritage, might have succeeded.

I will forever be thankful to the rabbi for not letting me go before wrapping me in my ancestors’ Tallit Gadol (prayer shawl) and Tefillah, holding my hand and reciting together the Shema, every true Jew’s call for our long due God…

Here I am, therefore, a mutilated Jewish soul, having travelled through valleys of shadows of death, awaiting alone in Leonhard Cohen’s larger than life spiritual shoes “for the miracle to come”, tired of all the maestros telling me it’s Mozart, when in reality it’s the same, lame sound of some cheap bubble-gum …

I do however, consider myself privileged to work as a forensic MH practitioner, with specialists from all areas of mental health clinical care, being also as Chair of a dynamic Disability and Neurodivergence staff network, raising awareness and driving changes to benefits staff with neurodivergent conditions and their families.

But what does [Rev.] actually mean?

It stands as a bold statement of a well-earned professional dignity, in respect however of my [temporary(?)] inactive status.

And to silence the ignorant choir of self-appointed “specialists” and “experts”, “autism advisors/consultants/etc”, I have put on display my credentials, the infrastructure of my oftentimes merciless assertiveness.

As I am writing I hear and see, the voices and faces of my patients for whom my years of study and dedication could become steppingstones onto a future away from a criminal justice system which has only started to learn, that maybe mishandling due to misunderstanding, of an autistic person in distress, could well be considered “assault against a vulnerable individual” as automatically as their autistic-reflex reaction is hastily considered “assault against a law enforcement officer” condemning an innocent individual to a stigmatised life …

I remember a couple years before the confusing end of the second millennium, an American missionary kindly offered his Microsoft Encarta 95 Encyclopaedia. As I inserted the disc into the drive, I was surprised to hear the inimitable voice of Nelson Mandela, quoting one of his own thoughts, which as years passed by, became more and more embedded in the foundations of my own thought process, a beacon of resilience for the painful years to come, a root and fruition to withstand the atrocities committed against us, the vulnerable and the oppressed, by the laws created for, and by those wearing their Orwellian, face-stomping boots:

“Let there be justice for all.”

 

*If you would like to support my work please consider donating at paypal.me/RevRomASD

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“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.

 

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-

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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/