Tag Archives: Autistic Spectrum

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

Medi-Soc Mod Neurodivergence Title Pic 1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

(to be continued…)

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

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

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

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

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

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

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

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

The Stockholm Syndrome Symptomatology of Neurodiversity Militantism

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

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

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

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

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

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

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

Keep this in mind…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I accept myself as disabled.

I “love” myself in spite of my disabilities.

But no one should expect me to love my disabilities.

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

So, what now?

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

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

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

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

There should be more to our neurodivergent lives than breadcrumbs…

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

Museo_del_Prado_-_Goya_-_Caprichos_-_No._43_-_El_sueño_de_la_razon_produce_monstruos

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

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

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

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

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Part 3 – The Myth of “Weak Central Coherence”

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

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

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

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

(to be continued…)

The Cognitive-Behavioural Interpretative Isolationism of Intellectually Proficient Kanner’s & Asperger’s Autism (IPKAA)© Part 2 – Arbitrarily Set Standards of Executive Functioning

Part 2 – Arbitrarily Set Standards of Executive Functioning

By Rom Feldmann© FdScMH, LTh(Hons), CertEd,

PgCert Special Psychopedagogy,

PgCert Autism & Asperger’s, QTS

 

– The Theory of Executive Dysfunction

            ‘Executive function is an umbrella term for functions such as planning,       working memory, impulse control, inhibition, and shifting set, as well   as for the initiation and monitoring of action.’ (Hill, 2004, 1)

Hill states that in order to guide actions, these functions need to disengage from the immediate environment, which seems to suggest that at least part of an Executive Dysfunctionality has to present as an impairment of an autistic’s ability to disengage from the object/subject of their immediate environment’s single focus and shifting their attention to possible prompts by external stimuli.

However, I would question the axiomatic assumption that an apparent non-responsiveness to external focus-shifting prompts must be seen as an ‘impairment’, since such an assumption would imply a standard, focus-shifting expectation to all incoming external stimuli, mandatory for all, as a pre-requisite of a social interaction expectation singularity, a universal norm.

Judging such a perceived non-responsiveness as some pathologically uncontrollable ‘aloofness’ is a dangerous, a priori inconsideration of an autistic’s right to wilfully accept or reject incoming stimuli, regardless of their animate or inanimate origins. Autistics, as anyone else, have the fundamental right of deciding without any obligation to justify their choice, to accept or reject anyone’s, verbal or otherwise, approach.

Given the fact that most “Intellectually Proficient Autistics©” have an upper-level thought process best to be characterised as an intense continuum, would render approaches as unsolicited intrusiveness, met with and honest and non-dissimulated  disinterest or silent/verbal rejections. Justifiably, disrespectful insistence is oftentimes perceived as aggression, which could lead to provoked shut- or meltdowns. It is unfortunate that these provoked episodes with extremely distressful consequences are not considered or classified as physical and/or emotional abuse or in many cases, assault.

The other aspect of this theory (Frith et al, 2010, p15 footnote) is an analogy with neuropsychological patients displaying impaired executive functions caused by frontal lobes damage, suggested by similar ‘frontal test’ results produced by these subjects and individuals diagnosed with Asperger’s syndrome and high-functioning autism.

Again, validating such a theory ignores an autistic’s volitional selectivity, leaving us either presumably brain damaged, or without any control over some pathological compulsions.

The question however, the genuinely disturbing question is: who decided  what the ‘standards’ of executive functionality are, and why divergence from these ‘standards’ must be viewed as “impairment” or “pathology”?

A possible answer is as disturbing as the question: the decision was most probably taken by neurotypical gatekeepers, interested (consciously or not) in establishing, further maintaining easily controllable, rigidly normative societal structures, leaving most population subject to a mass Stockholm Syndrome, using arbitrarily imposed societal ‘norms’ as means of compliance control, rewarded with nothing else than randomly refrained law enforcement harassment, disguised as ‘protection under the rule of law’.

Pathologising on grounds of superficial behavioural observations and biased evaluation premises, “Intellectually Proficient Autism & Asperger’s©” (IPAA©) individuals, is nothing more than attempts to control the innate proneness to logical judgement and justice, oftentimes displayed by IPAAs deeply involved and attached to protecting the vulnerable, fact also clearly backed by Tony Atwood  (Wylie et al, 2016, pg. 12)…

Pathologising our dedication to equality is a sad and dangerous attempt to devaluate justice into a law enforced pragmatic utilitarianism, reminiscent of malthusianism…

(to be continued…)

 

-Frith, U. (Ed.), Asperger, H., Wing, L., Gillberg, C., Tantam, D., Dewey, M., Happé, F. G. E., (2010). Autism and Asperger Syndrome. Cambridge: Cambridge University Press

-Hill, E. L. (rev. 2004). Evaluating the theory of executive dysfunction in autism.  http://research.gold.ac.uk/2560/1/hill_devrev04_GRO.pdf accessed 10.01.2018

-Hill, E. L. (2004). Executive dysfunction in autism. TRENDS in Cognitive Sciences Vol.8 No.1, January 2004, 26 http://www.ucd.ie/artspgs/langimp/autismexecdysf.pdf accessed 10.01.2018

-Wylie, P., Lawson, W. B., Beardon, L., (2016). The Nine Degrees of Autism, A Developmental Model for the Alignment and Reconciliation of Hidden Neurological Conditions. Hove and New York: Routledge

The Autistic Maelstrom …

The_Corryvreckan_Whirlpool_-_geograph-2404815-by-Walter-Baxter

In the new, updated edition of “The Autistic Spectrum” (2002), Lorna Wing offered on page 23 a brief history of the chaos which seems to continue to this day, surrounding risen and fallen efforts to decide the main, and sub-categories of what she identified as the Autistic Spectrum. In order to justify my statement, please allow me to quote:

“The changes in ideas about autistic disorders can be seen in the history of the two international systems of classification of psychiatric and behavioural disorders. These are the International Statistical Classification of Diseases and Related Health Problems (ICD) published by the World Health Organisation, and the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association. The first edition of the ICD did not include autism at all. The eighth (1967) edition mentioned only infantile autism as a form of schizophrenia and the ninth (1977) edition included it under the heading of ‘childhood psychosis’.
The 10th edition of the ICD (1992) and the third (1980), third revised (1987) and fourth (1994) editions of the DSM take the modern view that there is a spectrum of autistic conditions and that they are disorders of development, not ‘psychoses’.”

On page 29 of the same book, Wing details the reasons for this nosologic maelstrom:

“When an autistic disorder is diagnosed, there is the further problem of deciding which sub-group in the spectrum the individual belongs to. Now that the term Asperger’s syndrome is being used more widely, parents and professional workers as well, want to know how it differs from other forms of autism. Since Asperger’s group, unlike Kanner’s, includes mostly those of average or high levels of ability, the main question is how to tell Asperger’s syndrome from high-functioning Kanner’s autism. There is no simple answer.” Because as she establishes further, while some individuals present all the features of either, other individuals fit neither of these symptoms precisely, having (as myself…) mixtures of features of both.

And we haven’t even touched the serious problem of symptomatic and existential gender differentials, which is becoming more and more obvious, at least for the individuals on the autistic spectrum, because for the diagnostic and assessment services (at least in the UK, in my understanding) the primary diagnostic differentials are only age related. However, the UK’s NAS (The National Autistic Society) proves a genuine awareness of the necessity for further research at http://www.autism.org.uk/about/what-is/gender.aspx

To make things even more confusing, the DSM-5 published in May 2013, factually canceled Asperger’s as a separate diagnosis and included it as an autism spectrum disorder, with adjacent severity stages. It mentions nevertheless, that “Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”

But if one may think that the ICD-10 is of any better clarity, a quick look at its ‘F84.5 Asperger syndrome’ entry, reveals an opening statement which I would call at least seriously problematic: “A disorder of uncertain nosological validity“, as I’m not really sure that a standard international classification should be based on anything “uncertain”.

The reason for the rather thought-twisting title of this post, can be found in a well hidden -in plain sight- introductory statement, on an oddly placed (right after the front cover page, without obvious authorship or number) page of Uta Frith’s “Autism and Asperger syndrome” (2010) edited book, which opens its last phrase with the statement “Current opinion on Asperger syndrome and its relationship to autism is fraught with disagreement and hampered with ignorance”, followed nevertheless by the reassurance that the book “gives the first coherent account of Asperger syndrome as a distinct variant of autism …” I have insofar found the attempts to systematize Autism maelstrom-like, because as their aquatic correspondents, they absorb all concepts and definitions in their way, just to scatter them on devastated, more or less scientific ocean-floors, without seemingly ever considering that behind words and terminologies, are real-life human beings, suffering the oftentimes indifferent detachment of those we trust(ed) for a better life…

And this very statement would be exactly the conclusion-prelude to a series of open enquiries attempting to discover the adult, gender specific understanding of first of all, the most commonly and widely used autism screening tool, the Autism Quotient 50 (AQ-50). As an incentive for the reader’s personal consideration and most welcome comments, I am providing a link to a short scientific paper from the “Journal of Autism and Developmental Disorders, Vol. 31, No. 1, 2001” at http://docs.autismresearchcentre.com/papers/2001_BCetal_AQ.pdf

In my next post, I will attempt to offer for an even more personalized analysis and comments, the first ten (1 ÷ 10) questions of the AQ-50 autism screening questionnaire, in the hope of initiating a “real-life” and “Actually Autistic” blog-forum, where especially adults on the autistic spectrum can evaluate in a safe, anonymously confidential environment their gender specific, unique understanding of the relevance of these questions for their own screening and diagnostic assessments, in an atmosphere of non-belligerent acceptance, mutual respect, civilised ‘agreement to disagree’ attitude and constructive tolerance.

Most sincere apology to my readers and followers, and Word of Caution:

Having painfully learnt my lessons elsewhere, and in order to protect the emotional wellbeing and dignity of all well-meaning viewers and participants, all comments and replies henceforth, will be monitored and subject to approval. Therefore, if your comment and/or reply doesn’t show immediately, please be patient. But if your comment and/or reply doesn’t show at all, please rephrase!

Because no one shall be bullied or harassed in my own blogyard! 👾🤓

 

Photo credit: By Walter Baxter, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=33579199