Tag Archives: Kanner

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 

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