Category Archives: Neurotribes

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 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…

The Cognitive-Behavioural Interpretative Isolationism of Intellectually Proficient Kanner’s & Asperger’s Autism (IPKAA)©- Part 1: What the “Theory of Mind” doesn’t understand about the Autistic Mind…

 

Part 1- What the “Theory of Mind” doesn’t understand about the Autistic Mind

Rom Feldmann© FDScMH, LTh(Hons), CertEd,

PgCert Special Psychopedagogy,

PgCert Autism & Asperger’s, QTS

 

On the back cover of the seminal “Neurotribes” (Silberman, 2015) the inquisitive eye should spot a hidden gem of apocalyptic proportions, basically stating that “the future of our society depends on our understanding” of what autism is. The statement is so powerful and frightening or maybe totally insane, that when I first blogged it, it attracted virtually no likes or comments. I will attempt to better understand why.

Surprisingly for a pathologized, general view of autism, Attwood (2002) mentioned research by Hans Asperger (1906-1980) in identifying “a consistent pattern of abilities and behaviour”.

The battleground becoming contention is therefore seeing and accepting the autism spectrum as a pattern of abilities or disabilities, branching itself further into seemingly endless explanatory theories and terminology wars, which I will attempt to deconstruct and re-construct from a personalised academic and philosophical perspective.

1.The Theory of Mind (ToM):

‘[…] ToM is the ability to put oneself into someone else’s shoes, to imagine their thoughts and feelings, so as to be able to make sense of and predict their behaviour. It is sometimes called mind-reading or mentalising.‘ (Baron-Cohen, 2008, 57)

Expanding further on his own statement, Baron-Cohen summarises on the same page, that ToM can be thought of as a theory which explains that a neurotypical (NT) person is normally/usually able to explain and predict other people’s behaviour, thus leaving autistics unable to use the ToM to interpret or anticipate the actions and/or intentions of individuals whom they have contact with, and therefore mind-blindly disadvantaged.

In my opinion, -and leaving aside a random personal thought about the fairly entertainment industry resembling concept of ‘mind-reading’-, Baron-Cohen and other scientists considering this theory, have attempted through ToM to understand why autistics seem unable to mentalise/mind-read, having observed NT and autistic children/adults, comparing their reactions mainly from an observable, neurotypical-behaviour perspective, without focusing on the much more important, individually specific, selectively volitional, pre-behavioural aspect. Because regardless of age, autistic individuals may possess a more functional capacity to individually and gradually select -or not-, a momentary focus of attention, leaving a NT observant genuinely mind-blind to the fact that autistic pre-decisional mental analytics are de facto behind what could be perceived as obnoxiousness or an inability of perception. However, especially at early stages of individual development, autistics are less aware of the reasons why mentally they may decide to fixate on some encountered aspects while actively ignoring any others, even if someone tries to divert their fixated attention, oftentimes provoking as a result, unexpected reactions commonly called shut- or meltdowns. Depending on an autistic individual’s level of what I propose to be identified as a Neurobiological Socio-Interconnectivity Predisposition (NSIP), unfortunately mistaken sometimes for other, valid learning disabilities (LD) such as ‘congenital abnormalities of the frontal lobes’ (Attwood, 2002), adult autistics may decide to learn (or not), to mentally re-negotiate maintaining, or shifting the focus of their fixation, identified by Murray et al (2005) as monotropism.

Because each individual is entitled to have someone else’s undivided attention, as much as the individual(s) from whom they expect such attention, decide for reasons they should not be expected or forced to disclose, to grant it or not. Autistics have the inalienable right to ignore at least as much as we are oftentimes ignored, without any obligation whatsoever to provide a reason for our choice to socially interact or prefer to remain asocial.

(to be continued…)

 

-Attwood, T., (2002). Asperger’s Syndrome – A Guide for Parents and Professionals. London: Jessica Kingsley Publishers

-Baron-Cohen, S., (2008). Autism and Asperger Syndrome. London: OUP

-Murray, Dinah; Lesser, M.; Lawson, W (1 May 2005). “Attention, monotropism and the diagnostic criteria for autism”  Autism. 9 (2): 139–56.

-Silberman, S., (2015). Neurotribes. London: Allen & Unwin

 

 

 

 

Ninth of Asperger’s Ten Traits – “Feelings and other people’s actions are confusing”

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“9) Feelings and other people’s actions are confusing. Others’ feelings and our own feelings are confusing to the extent there are no set rules to feelings. We think logically, and even though we are (despite what others think) sensitive, compassionate, intuitive, and understanding, many emotions remain illogical and unpredictable. We may expect that by acting a certain way we can achieve a certain result, but in dealing with emotions, we find the intended results don’t manifest. We speak frankly and literally. In our youth, jokes go over our heads; we are the last to laugh, if we laugh at all, and sometimes ourselves the subject of the joke. We are confused when others make fun of us, ostracize us, decide they don’t want to be our friend, shun us, belittle us, trick us, and especially betray us. We may have trouble identifying feelings unless they are extremes. We might have trouble with the emotion of hate and dislike. We may hold grudges and feel pain from a situation years later, but at the same time find it easier to forgive than hold a grudge. We might feel sorry for someone who has persecuted or hurt us. Personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation seem to be easier to identify than emotions of joy, satisfaction, calmness, and serenity. Sometimes situations, conversations, or events are perceived as black or white, one way or another, and the middle spectrum is overlooked or misunderstood. A small fight might signal the end of a relationship and collapse of one’s world, where a small compliment might boost us into a state of bliss.”

Used with permission from @everydayaspergers. Originally published in Samantha Croft‘s -now former- blog, Everyday Asperger’s, as The Ten Traits.

I must confess it took me time to accept that EVERY SINGLE THOUGHT of the emotional maelstrom summarised in Sam’s 9th Asperger’s Trait, is not a picture I contemplate, but a movie I’m living…

I urge my reader(s) to read it carefully and slowly, simply because understanding is a first step towards the self-acceptance of ultimately who you are as an autistic individual, entitled to at least as much societal acceptance, as the amount of effort expected of you, from an environment which somehow always fails to invite autistics when setting its rules…

In my case, emotions oftentimes exist as extremes of a capricious pendulum, and I have emphasised capricious purposefully, because the dialectic motion-confinement of a pendulum doesn’t seem always acceptable to the neurobiological autonomy advocated by my brain. You see, a pendulum is predictable, bound to return onto its own origin every time it leaves it, until friction has its last word. Sometimes however, my pendulum just freezes, having decided not to return anywhere, because as much as Asperger’s and Autistics are inclined to routine and patterns, the final touches of every e-motion’ are dictated by details imperceptible to neurotypicals, each such attribute presenting itself as an indispensable cog in the refined machinery of our emotional displays. And if you think that these cogs are some standardised items floating around awaiting to fall in some specific spaces, well, you may be wrong…

Exempli gratia, think of these cogs as rather aggregated molecules of water, always H2O, but “expressing” themselves in shapes and forms depending of the environment, but ultimately influencing it, changing it…

Remember the boiling water from your home kettle, so indispensably helpful to your tea, but so devastating on your skin; or the soothing embrace of your favourite beach’s waves, becoming cruel undertakers for a sinking ship; or the cooling rain soaking the thirsty grain fields, just to turn into murderous fist sized hail-stones underneath a cold cloud, and the list could go on forever. That’s exactly how the autistic emotional responses will be shaped by unaware, oftentimes ill intended individuals and their approach to Asperger’s and Autism.

So, remember, if the water-cogs of my neuro-biologically predisposed surprised/confused reaction, encounter your frozen/patronising/demeaning attitude, don’t be surprised to find snow on your shoes, ice under your feet, on your way out of my phonebook…

Stimming (Self-stimulatory Behaviour / Repetitive Stereotyped Activity) – 1

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In her seminal book “The Autistic Spectrum” (1996), Lorna Wing, OBE, FRCPsych, described what she identified as Repetitive Stereotyped Activities, to be “the other side of the coin of impairment of imagination” (pg. 45). The Autistic community has come to embrace the term stimming (as the shortened form for self-stimulation), which unfortunately acknowledges only one of Wing’s identified types, the simple ones, as these activities were further categorized as simple and elaborate. As she explains, “the simplest forms of these activities involve repetitive sensations” such as:

-tasting

-smelling

-feeling or tapping or scratching different surfaces

-listening to mechanical noises

-staring at lights or shiny things

-twisting and turning hands or objects near the eyes

-staring at things from different angles

-switching lights on and off

-watching things spinning or self-spinning

Sometimes, especially when “someone has no other way of occupying themselves“, self-injury can become a repetitive behaviour.

As I mentioned in one of my previous articles, Stimming vs Fidgeting… I believe there is a fundamental difference between fidgeting and stimming, with stimming as a mainly autism-specific Repetitive Stereotyped Activity.

In an attempt to make this article more ‘user friendly’ I’ve photographed some of my favourite stimmers (a term I use and suggest instead of stim-toys), a small American-football and two different hand strengtheners, one of rubber and the other as a small mechanical contraption, with a fountain pen as a dimension guide.

First of all, allow me to explain why I suggest stimmers. One of the reasons is the unnecessary association with toys in general which automatically follows the use of stim-toys, and the other being an even more unnecessary association with ‘toys’ of a more ‘adult’ nature…

Secondly and probably unknown to many, the word stimmer means in German amongst others tuner, used to tune musical instruments.

Now, as I explained in my  Stimming vs Fidgeting… post, stimming is fundamentally different from fidgeting because it requires the individual’s dedicated attention, and somewhat similar to a tuner, it seems to help the individual tune their sensory, cognitive and behavioural functionality.

For example, you may notice in the picture of my stimmers, that due to their material structure, they have particular surfaces, some smooth and soft such as blue rubber strengthener, rough and soft such as the small brown ball, cold and smooth such as the metal coil, strong smooth such as some parts of the mechanical strengthener or strong and rough such as other parts of it.

One may think that these differences are negligible, which may be the case for fidgeting, but not for stimming, because -at least in my case- the surface structure follows a typical need which cannot be met by any structure, but only specific ones. When I use for example, the blue rubber stimmer, my four thumb opposing fingers automatically seek the comforting ‘feeling’ provided by the four small velvety depressions found on one of its sides, and while the thumb provides support, the other four fingers are becoming anything in between trumpet key dancers and Morse code transmitters, and the choreography is endless.

In an autistic’s hand, an object becomes an objective, an instrument which tunes the complex functionality of the autistic brain, with its unusual capacity to process sensory stimuli in more areas than the specialised neurotypical brains.

 

A next post will cover the Elaborate Repetitive Stereotyped Activity, or stimming…