Tag Archives: Neurodivergence

“Autism Spectrum Dependency Classification System v 1.0” -proposal-

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

Previous attempts to classify the Autism Spectrum (AS), failed to understand the ‘trees’ within the ‘forest’ of unknown dimensions, which has become generally known as Autism Spectrum Disorders.

I am unwilling to concede ‘disorders’ to ‘conditions’ simply because after countless episodes of bullying and harassment from mostly ignorantly unqualified individuals and groups, in this case having found in their “autism activism” a venting platform for complex seemingly psychological issues, I have decided to initiate and maintain liaison only with academically and/or experientially qualified entities, willing to participate in existing efforts to rescue and restore the Autism narrative from the chaos caused by such incompetent “movements” and individuals, the vast majority of whom have spawned from Judy Singer’s disastrous, “NeuroDiversity” brain-child, born as an “idea” explained by the book’s Amazon abstract as follows:

“The word itself was just one of many ideas in this work, her 1998 Honours thesis, a pioneering sociological work that mapped out the emergence of a new category of disability that, till then, had no name.” (italics mine)

Surprisingly, however, as I have detailed in a previous essay, Singer’s careless inference with the medical field mutated into an increasingly conflicted understanding of disability, revealed in a recent article as “The problem with the expression “People with Neurodiversity” is that it turns Neurodiversity into the latest fashionable synonym for Disability.”

The necessity to re-classify the AS should be obvious to all ‘navigators’ of a “system” which could be best depicted as a beach playground where infantile participants more and more aggressively, try to destroy and rebuild their newer and newer sand-castles of a derailed activism, fortunately washed away by oftentimes feeble, but nevertheless professionally and/or experientially much more accurate attempts to defend the Autism narrative from becoming another defunct sociological experiment.

The real reason in my opinion for this constant threat for the wellbeing of millions of autistic individuals and their families worldwide, including my own, is the collapse of observational behaviourism as exclusive instrument in understanding Autism from its ontogenesis throughout its lifetime progression, having left behind a Medi-Social Model identifiable void, where oftentimes hazardous and dangerous psychiatric interventions are being argued against by an equally hazardous reactivist revisionism, frightened apparently that “as long as autism – which is not a mental ill-health condition – remains in the psychiatric diagnostic manuals, there will continue to be those who use this to justify their attempts to find a cure.” (italics mine) (Chown & Leatherland, 2018).

I cannot, in all honesty, understand how and why would 25 autistic individuals, many of whom academics, be afraid that millions of individuals with autism, living themselves, their families and/or care environments under the constant threat of self-harm, wandering and uncontrollable violence, would be offered a treatment, a cure?

I have developed the Autism Spectrum Dependency Classification System, as a response-proposal against the confusions caused by the changes in the past years to the two, main disease categorisation systems, the DSM and the ICD, also the chaos in the less formal use of “functionality-based labels”, the now literally demonised HFA or High-Functioning Autism and LFA or Low-Functioning Autism.

As I have already hinted throughout my social-media presence, I consider dependency the most practical means of conveying the level of functional autonomy of an Autistic -or any other- individual, integrated with a simple, universally applicable sub-categorisation system, by which dependency is in direct proportion with the identified comorbid symptoms, as an individualised, non-numerical quotient of support needed for the maximum achievable autonomy.

By using the concept of “comorbid symptoms” I acknowledge Autism as a monolithic disorder featuring the below explained intellectual/mental, neurodevelopmental, physical and mental-health/psychiatric conditions not as independent co-morbidities (regardless of their also non-autistic existence), but as comorbid symptoms sharing origins simultaneously or developmentally with their Autism root.

The following codes have been used:

ID/MR – Intellectual Disability / Mental Retardation

LD – Learning Disabilities: Dyslexia, Dyspraxia, Dyscalculia, Visual Stress Syndrome, SPD (Sensory Processing Disorders), Tourette’s Syndrome, etc.

PHD – Physical Disabilities (observable and/or non-observable): Motor-functional (Fibromyalgia, CFS, Spinal Disorders, MS, etc), Diabetes, Metabolic Syndrome, etc.

MHD – Mental Health Disabilities: Clinical Anxiety & Depression, B/EUPD, Pathologic Demand Avoidance, etc.

ASD Dependency Cat System

I am publishing this first version of my proposal, relying in all honesty on my personal, academic and professional integrity in regard to having created this system without any deliberate intention to copy or otherwise unethically inspire from anyone else’s previously published thoughts or ideas. Should the reader have any questions or concerns about this, I would respectfully appreciate being informed about it, to address any issue as soon as possible.

This initial proposal version wishes to become a collaborative effort with -as previously mentioned-academically and/or experientially qualified peers. Should you be interested in collaborating, please DM me at https://twitter.com/Rev_Rom_ASD, keeping in mind that I reserve myself the right to extend any further collaborative invitations.

 

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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…)

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 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.

On Neurodivergent Solitude…

Daydream on Solitude

It’s been a while since reading a post which at the time represented an epitome of honesty, from a world unknown, foreign and distant for the vast majority, the universe of those for whom solitude may be exactly on the opposite of unwantedness…

The author’s plea was powerful and simple: “Embrace Solitude”.

Now I know how strange and “abnormal” may this sound for some of my readers, bordering a world ostracised by the “media” onto shores of mental pathology, from where “loners” emerge to disrupt the (un)desirable illusion of what’s been arbitrarily decided to be known as “society”, with it’s virtual book of “faces”, where “likes” have “value” and “friendships” oftentimes last less than a tweet’s ephemeral life.

Decades ago, while ignorant of my true self, I was still chasing a place in this world, I visited a small northern Transylvanian village, home to the family of a former acquaintance of mine, a typical rural, long house, with a long porch, offering wool covered benches to rest at the end of a day, shelter from heat or rain. And while we, the “civilised” city dwellers were exchanging the usual nonsensical rubbish called small talk, disturbing the background, quiet saintly symphony of crickets and corn brushing winds, this old man, in his late eighties, dressed in his traditional, soap smelling clothes, sat there, at the far end of our uselessness, quietly smoking, absorbed by something I came to value lately, by his own solitude. Oblivious we thought him to be, distant and obnoxious, even though as he sometimes turned his eyes on our little group, he seemed to smile, but looking back, I’m sure he may have just seemed to…

I guess he just felt sorry, or maybe pitied us for wasting the time so scarcely measured onto each of us on nonsense, as from his point of no return, the biological and psychological life of an individual was understood to be centred around the individual himself, detangled from anything and anyone else beyond the unavoidable biopsychosocial reciprocities of life.

Now the image of that solitary old man, absolutely at peace with his quiet remoteness, has been ever since the daydream of a man who has come to understand not only the altruistic friendliness of solitude, but also its desirability. And if “altruistic” friendliness may confuse you, please consider solitude as the uniquely delimited space, shaped after all your unadulterated characteristics, something like an amniotic liquid filling all spaces between the protective walls of a womb and yourself.

Would this be the perfect scenario for all? No, absolutely not, unfortunately…

Is this the perfect scenario for all of us, neurodivergents? I wouldn’t venture guessing beyond my own perfect amniotic sac…

Why am I asking these, probably uncomfortable questions?

Because reading the so many times frustrated pages of my neurodivergent “tribe” I sense from one end the neurotypical world’s bullying attitude of rejecting solitude in an attempt to forcibly categorize it as “antisocial”, and from the other, the neurodivergent fear of understanding and embracing it, with too many carrying the unjust guilt of secretly loving it and desiring it, sadly in a world of maladaptive values and counterfeit societal conjunctures.

If your question has become now, “Is solitude for Me?”, ask yourself why are you asking this?

Is it because each time you’ve chosen it, you ceased being and feeling alone?

Is it because each time you’ve filled it, you ceased being and feeling lonely?

Well, I won’t give you an answer only yourself can give…

But I shall venture saying this: when I understood my neurodivergence and understood how solitude and me were chasing each other since we’ve parted ways over half a century ago, I became myself.

Unashamed of my own self, of my own silence, of my own thoughts, of my own magnificent inner world with all its patterns and choreographies of rhymes and rhythms, I’ve ceased being lonely, I ceased being alone.

In my newly re-discovered world, solitude has become the perfect and desirable replacement for loneliness, anxiety and depression, where my ephemeral life’s batteries are recharged.

Isn’t this some sort of escapism, you may ask?

Oh, but it is, the perfect place to escape a world I haven’t been there in its beginnings to shape, onto a world I’ve been carrying with me ever since, just seconds and inches away, beyond thin, but nevertheless easy to close behind, doors…

And if that door is a real door somewhere I feel safe, or between my headphones or ear-defenders, or on a bench in a quiet park or backyard, I could care less.

Once within, I’m with me in; there my “awkwardness” becomes my “greatness” , my “weirdness” becomes my “uniqueness” and my “impossibleness” becomes my “endless potential”.

What about You?