Tag Archives: Asperger’s

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 

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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/

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 #autistic lives of pines…

Solitary autistic pine

I was born in Northern Transylvania’s Maramures, at the feet of majestic mountains, covered by ancient, noble forests, with their trees as brothers to us, and sisters. Strong beeches, venerable oaks, solitary pines, imbued with the crystalline waters of pure streams …

It’s the pines which fascinated my people for millennia, giving us our cradles, our tables, out beds, the pillars of our gold mines, and the coffins of our passing away.

Now, anyone seeing lots of pine trees may think it’s a forest, but they’re not…

Pine trees are solitary. Pines are #autistic

Always alone but never lonely, with one purpose, to reach ever higher, leaving behind as time passes by, as the crown moves upwards, dry, broken branches, like thorns awaiting for the careless passer by…

You see, the life of pines is in their roots and in their evergreen tops, the painful reason why you can’t embrace a pine tree except maybe when it’s young, a child. As it grows older, the crown moves upwards, leaving the naked, dried broken branches around, hurting anyone coming too close…

There’s a secret though…

If one is clever enough, they might find looking upwards to the green crown, a path in the dry broken branches like a ladder, leading the brave to the top. There, there are no sharp branches, just velvety fresh green fragranced new branches, allowing to be embraced and loved… Pines love only those daring to come close enough and climb to find who they truly are. And in exchange, they give something only pines can give, because they always return the careful touch and the embrace. They bleed the most beautifully perfumed resin, coloured of amber, smelling of frankincense, and the stronger the touch, the longer the embrace of the brave who wants to love them, pines bleed more resin, binding them as lovers to themselves, forever…

And when our time has come, we remain standing, calling out in stormy nights the final touch of heavens, the kiss of one last lightning, burning like torches, illuminating the paths of wandering lovers…

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

The importance of Asperger’s Syndrome as a unique clinical diagnostic category…

Aspergers and Ignorance (2)

On page 1 of his fundamental summary of (Classic) “Autism and Asperger’s Syndrome”, S. Baron-Cohen (2008) lists as “Key Points” the two, overlappingly different subgroups of what has come to be known as the “Autistic Spectrum”.

“Classic autism and Asperger syndrome share two key features:
         -Social communication difficulties
         -Narrow interests and repetitive actions.
 But they differ in two key ways:
         -In Asperger syndrome, IQ is at least average and there was no language delay
         -In classic autism, IQ can be anywhere on the scale, and there was language delay.”

However, these key, common and differentiated features make only for a minimal area of understanding, assessing and living with either condition.

In my opinion, DSM-5 has managed with its promotion of an Autistic Spectrum “umbrella”, to both simplify, but also confusingly complicate the clear understanding of exactly those specifics which could make the lives of neurodivergents, less miserable. Luckily (I hope) for the neurodivergents living in the UK, while the clinical diagnosis implicitly reflects the DSM-5 when mentions “Autistic Spectrum Disorder”, still retains (at least in my case) the ICD-10’s “Asperger’s Syndrome” definition, making easier setting up a post diagnostic assistance and support program. Because regardless of how emotionally stabilising may be to have adult, male and female, HF Autistics and Asperger’s individuals considered together for our rights to exist as we are, the uniqueness of each of us is so important, that this arbitrary “one umbrella fits all” approach becomes discriminatory in itself.

Why?

Simply because from my perspective, the developmental aftermath of a language delay (and oftentimes subsequent learning disabilities) is absolutely different from that of a no language delay (and the oftentimes present special learning difficulties), further “complicated” by the bio-psychological specifics of males and females.

It’s probably much “easier” for some professionals, but certainly for the health business to bother less with tailoring both the pre- and post-diagnosis services by favouring the “uni” part of our individual uniqueness, instead of developing better, more updated assessment/diagnostic tools, which could offer findings vitally important for identifying the exact life needs of each of us, neurodivergents.

Looking forward therefore to my upcoming post-grad training, I have decided to challenge especially the over-generalised screening/assessment establishment, calling primarily for Asperger’s individuals, preferably diagnosed as adults, both females and males, to share their own understanding of some major Asperger’s screening/assessment tools, which will form in a staged form, the core of my upcoming posts.  The posts, comments and replies are planned to become anonymous points of reference for my future academic endeavour(s).

All comments and replies are absolutely welcome, with a respectful and special call to any qualified, clinical colleagues (yes, Laina that would include you 😊) whose “life touched” professional knowledge could be especially useful.

Because I still believe that any plural which is not established in clear singulars, becomes automatically void of its function.