Category Archives: High Functioning Autism

Is an “autism community” a dangerous mirage, or a valid social construct?

LEGO puzzle piece (3)

I have recently been asked on Twitter the following:

“I’m going to ask a question but you don’t have to answer. So, I just started wanting to understand autism better since my son was dx, and I know the best knowledge comes from those actually in the community. Anyway, I imagine as you get (o)lder* it’s important to have an understanding community you can relate with; so why is this community so divided? I’ve seen many very respectful, but I also saw some downright cruel to one another. And guess my question is what happened, why [Are]* there some people in this community that [are]* so viscous and vile? I just can’t understand why a few are determined to tear others down?”

The question which I read at 06:26 this morning, grabbed both my mind and heart with its absolute, wise candour, prompting my following answer thread:

“A real “autism community” is a mirage, generated from noble intentions, an illusion however, because Autism is the epitome of individualism, defying any true group cohesion. 1->”

“Further, since Autism is characterised by polarised thinking patterns, it inevitably generates extremes, which will inevitably clash. This unfortunately, will tear down any attempts to create a monolithic unity, leading to “factionism”, dominated by belligerence and loudness. 2->”

“The ONLY way of mending this self-generated gap, is rationally accepting the legitimacy of situational truths, where valid, evidence-based fragments of an endless reality, are allowed to be mutually/reciprocally used as building bricks of a developing understanding of Autism. 3->”

“The Puzzle Piece was a valid beginning. However, the time of the LEGO brick has come. LEGO bricks are the best descriptors for infinity, better than the closed-circuit Mobius symbol, because they can’t be practically “complete”. Anything meaningful in LEGO must be agreed. 4->”

“And real-life agreements are reached only through the mutual acceptance of any remaining disagreements. Autistic nirvana is real. It is the simple acceptance of a perfectly autistic dichotomy of open ends, where for every aspect there will be an anti-aspect. 5->”

“Once un understanding has been reached about the fact that the very existence of “disagreement” as a concept, is guaranteed by the pre-existence of a concept called “agreement”, mutual acceptance becomes possible*. Life itself is built upon acceptance-rejection, yes-no. 6->”

“What makes us human nevertheless, is an understanding of this dichotomy, a rational acceptance of the axiomatic right of every disagreement to live in the protective shadow of an* agreement. The only other alternative is war, ultimately mutual annihilation. I’ve chosen therefore, the * LEGO way*.”

As you may see, I have intentionally left everything twitter-formatted; because it best covers the core essentialism of my thought, summarised in the last tweet:

“The only other alternative is war, ultimately mutual annihilation.”

I’ve seen and experienced cruelty and meaningless trolling on twitter, which has left me scarred for a lifetime. Lives on the brink of emotional ruin, behaviours which in a real-life scenario could seriously extend someone’s psychiatric hospitalisation, all for the almighty sake of winning oftentimes questionable arguments.

Much of the time I have spent on this platform hijacked by extremism and abuse, it was time robbed away from the duty I have due the talents I’ve been bestowed upon, a waste of energy and resources, with one apparent reason, an unwarranted albeit necessary dive in the rabbit hole of my own darkness and fears.

I’ve seen and experienced enough, time has come to move on.

I will start by unblocking all those (quite few unfortunately), of whom I believe to have seen a side different than the one I may have encountered while incidentally intersecting with their own, rabbit hole dives.

I will carry on building my side of what I believe to be valuable in a dialogue, at the moment between the moderate pro-ND and ND-critical sides, awaiting any reasonable proposals to interconnect with similarly minded individuals from the “other” side. The fact that individuals find themselves on either side of Neurodiversity, may show an interest, an eagerness to maybe find valuable aspects and details for a much necessary common ground. Exception from this willingness concern those determined at this time to trivialise the Medical/Clinical Model of Disability, together with those seeking to do the same about the Social Model of Disability in regard of their relation to neurodivergent conditions.

I am to this end, openly and respectfully calling Judy Singer @singer_judy to a constructive dialogue, away as much as possible from twitter, of reconsidering Neuro-Diversity from the perspective of nearly three decades since the concept saw the “light of day”.

It is a rather desperate call, rooted in my unwillingness to passively witness the annihilation of a genuine possibility for progress and development, long due in the lives of autistics, individuals with autism, their dedicated families and carers. We are already witnessing the disastrous results of a derailed neurodiversity militantism, in the lives of families having had drastic, valuable government funding reductions, following biased and unwarranted lobbying by groups unwilling to see beyond subjectivism in regard of effective behavioural interventions.

This is also an invitation to all those who are willing and capable for as much as possible to lay down or bury the hatchet of past grievances and participate in such a dialogue. I am aware that many such grievances have gone too far into the realm of personal offensiveness, having maybe left irreversible emotional trauma and scars. And while forgiveness is always on option, it doesn’t come for granted. It is up to every one of us, to seek, give or receive it as individually considered, because I do not see the Stockholm Syndrome an option for cooperation.

In my title, I ask, “Is an ‘autism community’ a dangerous mirage, or a valid social construct?”

I believe that if it becomes bound to a hive-mind, with enforced, rigid language policing and taboo subjects, it is no better than an aggressively militant mob, a mockery and indeed a dangerous mirage of a dystopian “community”.

A genuine community allows for growth, change and constructive debate, where all members have equitable rights and responsibilities, aware that behind all objectivity, hide real lives of individuals with subjective ideas, behaviours and needs.

[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

*later addition

-original image: https://www.pinterest.es/pin/403635185323282537/

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A critical introduction to “The nine degrees of autism, a developmental model” (editors Wylie, Lawson & Beardon, 2015) -1-

dsm-bibleFew may remember, even from amongst the book’s actual readers, that its complete title is “The Nine Degrees of Autism, a Developmental Model for the Alignment and Reconciliation of Hidden Neurological Conditions” (editors Wylie, Lawson & Beardon, 2015)
The necessity of mentioning the book’s complete title is justified by a title’s further reaching implications. With scarce (mediocrity justified) exceptions, the title of a written work carries deeper summarising intentions, oftentimes a book’s legacy, if any.
Since its 2015 publication, the Nine Degrees has become for some autistics -according to some of their Social Media accounts- their “Bible”, however, the book has remained lesser known than some might have hoped considering its authorship of fairly well-known autism and Asperger’s specialists. The reason in my opinion, could be exactly the clear structurally different autism narratives embraced by its many authors through their scientific and academic backgrounds.
Because co-authorship of scientific works carries with itself the ever-present danger of maybe losing its “essence”, often divergent amongst authors; because while “essence” has a grammatical plural, in a scientific endeavour a plurality of essences could be detrimental, even confusing.
Being nearly impossible to comprehensively review a book by so many different authors, this short introduction has been written with an openly acknowledged intent of revealing a conflictual situation caused by the influence on the book, of an extremely poorly considered (un) categorisation of the autism spectrum, by authors of the DSM 5 followed by the WHO’s ICD 10/11. And since from amongst authors Tony Attwood took upon himself the indeed difficult task of writing a pertinent “introduction” to a complex, co-authored book knocking on misty doors still hiding the autism’s complicated secrets, it will be exactly his introduction, the subject of this introductory critique.
My task is greatly facilitated by Prof Attwood’s compact, nevertheless conceptually rich academic style, however, beyond this rather personal style matter, my choice was motivated by indeed the representative content of his summative introduction, reiterated degree by degree, by the book’s many authors.
As most may remember, Attwood has gained a well-earned international reputation as a clinical specialist and academic in the developing field of autism spectrum disorders, especially it’s Asperger’s syndrome subcategory. For many, many years, discussions around autism rarely missed Prof Attwood’s valuable insight in the -mainly- behavioural aspects of autism, emphatically Asperger’s syndrome.
Generations of seekers found answers in the clinically documented accounts of individuals diagnosed with Asperger’s syndrome often aligned side-by-side with aspects of individuals from the general category of “neurotypicals”. However, and rather unfortunately, my notes will not dwell on Prof Attwood’s unquestionable contributions to the field of autism research, but on what I identify as a caveat to the chaos caused by the unwarranted -with devastating consequences- interference in the autism narrative of Judy Singer’s new-age infused “neurodiversity” derailment, followed by Silberman’s brilliantly written gay-rights movement influenced book, which continues nevertheless to undermine not only the desperately needed Autism research, but also the desperate efforts of individuals and families affected in life altering ways by not only autism, but also by disastrous, government dependent social support reduction consequences, for people with very little or no capacity of understanding the world around them, incapable therefor of autonomous/independent living. And instead of having the social support sphere’s efforts channeled towards finding and defining the best ways of supporting in an individually established way all individuals affected by autism, opportunistic sociology and fame seeking journalism are leaving literally millions in the shadows of a limelight hijacked by a militant, identity confused minority. Because until autism and its multi-faceted Dependency Model will be understood, the only “beneficiaries” of this -short lived- “fame” will be those profiting from “teaching” individuals and organisations about how to expect from all these “cool” “neurodiverse” autistics to happily look forward to the golden age when with a few, low-cost “social adjustments” they will be fully accepted as simply another “tribe”, the “neuro-tribe”, by the “happy” community of this newfound tribalism.
It is not however, the short study’s purpose to expose the sad, irresponsible attitude exhibited by individuals having virtually weaponised Singer’s -in her own words- “sacrosanct” neurodiversity concept, against any opposing views and “opponent”, many of whom are hard-tried parents of ASD children. These “neurodiversity vigilantes” have made and are actively making their way as far as government advising bodies, “coincidentally” governments responsible for sadistic reductions of funding for proven, successful therapies such as ABA, simply because the #NDcult decided to demonise something they have no understanding about. And governments have never been shy of loving anything cost-cutting…
Returning to the title, the reader has to remember the rather silent mention of what the authors agree to be referred on the cover as a “developmental model”.
When I first saw the book’s title, I was hopefully intrigued, expecting maybe some viable alternative in the unwarranted war between proponents of the medical and the social models. Instead, upon opening at the under-cover page, I was surprisingly informed that this -according to the editors- “ground-breaking” model is a “positive tool” for understanding autism’s “developmental process”, meant to “facilitate the improved mental health and well-being of individuals on the spectrum”, which should “encourage people on the spectrum” to positively “accept themselves by focusing on their gifts”… (emphasis mine)
Unfortunately, my hopes of having maybe found a reconciliatory model, fell sadly apart upon reading the -hidden in plain sight- bias of the editorial team, against what’s mentioned as “negative medical classifications”.
I am not entirely sure that the de facto authors of the book, especially the internationally respected academics of complex -much more than behavioural- medical sciences, were aware that their contributions will have as foreword a clearly subjective bias, basically setting their “negative medical classifications”, and therefore much of their scientific, medical associations with these “classifications”, against the editorial team’s self-proclaimed “positive” approach.
Few are probably aware of what theologians acknowledge as the “principle of the first mention”, which asserts that the conceptual and contextual first mention of a thought/principle within an autonomous writing, letter, scriptural book, et cetera, will set the thought/principle’s definitory influence throughout the writing.
I am therefore obliged by virtue of my interpretative training, to observe that mentioning this bias on the book’s very first page is in fact a declaration of the editorial team’s assumption, about their own model’s “superiority” against other “negative medical” models.
Returning once again to the title, might leave one wondering about its meaning; meaning which stubbornly eludes me to this day, failing at each reading to understand the meaning of a developmental model, “for the alignment and reconciliation of hidden neurological conditions”. My bewilderment isn’t at all helped by the book’s aforementioned trend setting first page, which as previously mentioned, attempts to apply da capo the proposed model, to other “hidden” neurological conditions such as dyslexia, dyspraxia, apraxia, and ADHD, because as the unfortunate recipient of most mentioned disorders, I fail to grasp how am I supposed to see anything positive in often antagonising conditions constantly competing for the last patches of my shrunken sanity, leaving me daydreaming day after day of past “positive experiences” of which I’ve never been part.
If anyone reading my thoughts and deciding to read the book will have arrived at a conclusive understanding of the meaning behind “a developmental model for the alignment and reconciliation of hidden neurological conditions”, let them kindly approach me for a much sought-after enlightenment. Because as much as I am trying to grasp even the syntactic coherence of it, I am constantly thrown back to square one reading that the book’s title and therefore presumed subject, were conceived by one of the editors, “during his identity alignment process while writing a book about very late diagnosis of Asperger’s syndrome”.
Now again, my theological training of connecting metaphysical dots, became useful at proving right a feeling about this “identity alignment” concept, which could be related to the presence amongst co-authors of a “shamanic healer”, whom seems to have transformed the very complex “identity crisis” concept, into an even more unfathomable “identity alignment” concept. As a fairly well read theologian, I am no foreigner in the ever fluid lands of spirituality -shamanism included-, being left baffled nevertheless by the “necessity” of introducing metaphysical concepts into an already abused, autism narrative, where confused and burnt-out autistics and/or parents of severely handicapped autistic children, are forced to battle governments and powers to be, callously insensitive to their plight.
But that again, isn’t at the purpose of my thoughts…
The overall, conclusive purpose of this first part, of a “to be continued” introduction, is my utter failure to understand how authors with a valid, evidence based understanding of both autism and Asperger’s, have engaged in writing -some of them- absolutely valid perspectives of their own scientific fields, “forgetting” to clarify that actually MOST of the book is written about and for the subcategory of autism known as Asperger’s syndrome, and no one, not even the DSM 5 or the ICD 10/11 with their arbitrary removal and attempt to annihilate Asperger’s as a subcategory of autism, can change the fact that basically nothing written in this book could be applied to any other category of autism besides -mostly- Asperger’s syndrome and high functioning autism.
Writing a book about “autism”, when most of it doesn’t apply -as implied by its title- to the entire Autism Spectrum, but only to a segment which far from neutral medical authorities, want for undisclosed reasons to obliviate, is unfair, unscientific and ethically questionable; raising false hopes followed by depths of despair, for many parents of children with severe, High Dependency Kanner’s or Asperger’s autism.

(to be continued…)

*Image credits: https://psmag.com/social-justice/dsm-psychiatry-diagnostic-bible-mental-disorders-58075 

“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.

 

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

Medi-Soc Mod Neurodivergence Title Pic 1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

(to be continued…)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued…

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