Tag Archives: Classic Autism

Is an “autism community” a dangerous mirage, or a valid social construct?

LEGO puzzle piece (3)

I have recently been asked on Twitter the following:

“I’m going to ask a question but you don’t have to answer. So, I just started wanting to understand autism better since my son was dx, and I know the best knowledge comes from those actually in the community. Anyway, I imagine as you get (o)lder* it’s important to have an understanding community you can relate with; so why is this community so divided? I’ve seen many very respectful, but I also saw some downright cruel to one another. And guess my question is what happened, why [Are]* there some people in this community that [are]* so viscous and vile? I just can’t understand why a few are determined to tear others down?”

The question which I read at 06:26 this morning, grabbed both my mind and heart with its absolute, wise candour, prompting my following answer thread:

“A real “autism community” is a mirage, generated from noble intentions, an illusion however, because Autism is the epitome of individualism, defying any true group cohesion. 1->”

“Further, since Autism is characterised by polarised thinking patterns, it inevitably generates extremes, which will inevitably clash. This unfortunately, will tear down any attempts to create a monolithic unity, leading to “factionism”, dominated by belligerence and loudness. 2->”

“The ONLY way of mending this self-generated gap, is rationally accepting the legitimacy of situational truths, where valid, evidence-based fragments of an endless reality, are allowed to be mutually/reciprocally used as building bricks of a developing understanding of Autism. 3->”

“The Puzzle Piece was a valid beginning. However, the time of the LEGO brick has come. LEGO bricks are the best descriptors for infinity, better than the closed-circuit Mobius symbol, because they can’t be practically “complete”. Anything meaningful in LEGO must be agreed. 4->”

“And real-life agreements are reached only through the mutual acceptance of any remaining disagreements. Autistic nirvana is real. It is the simple acceptance of a perfectly autistic dichotomy of open ends, where for every aspect there will be an anti-aspect. 5->”

“Once un understanding has been reached about the fact that the very existence of “disagreement” as a concept, is guaranteed by the pre-existence of a concept called “agreement”, mutual acceptance becomes possible*. Life itself is built upon acceptance-rejection, yes-no. 6->”

“What makes us human nevertheless, is an understanding of this dichotomy, a rational acceptance of the axiomatic right of every disagreement to live in the protective shadow of an* agreement. The only other alternative is war, ultimately mutual annihilation. I’ve chosen therefore, the * LEGO way*.”

As you may see, I have intentionally left everything twitter-formatted; because it best covers the core essentialism of my thought, summarised in the last tweet:

“The only other alternative is war, ultimately mutual annihilation.”

I’ve seen and experienced cruelty and meaningless trolling on twitter, which has left me scarred for a lifetime. Lives on the brink of emotional ruin, behaviours which in a real-life scenario could seriously extend someone’s psychiatric hospitalisation, all for the almighty sake of winning oftentimes questionable arguments.

Much of the time I have spent on this platform hijacked by extremism and abuse, it was time robbed away from the duty I have due the talents I’ve been bestowed upon, a waste of energy and resources, with one apparent reason, an unwarranted albeit necessary dive in the rabbit hole of my own darkness and fears.

I’ve seen and experienced enough, time has come to move on.

I will start by unblocking all those (quite few unfortunately), of whom I believe to have seen a side different than the one I may have encountered while incidentally intersecting with their own, rabbit hole dives.

I will carry on building my side of what I believe to be valuable in a dialogue, at the moment between the moderate pro-ND and ND-critical sides, awaiting any reasonable proposals to interconnect with similarly minded individuals from the “other” side. The fact that individuals find themselves on either side of Neurodiversity, may show an interest, an eagerness to maybe find valuable aspects and details for a much necessary common ground. Exception from this willingness concern those determined at this time to trivialise the Medical/Clinical Model of Disability, together with those seeking to do the same about the Social Model of Disability in regard of their relation to neurodivergent conditions.

I am to this end, openly and respectfully calling Judy Singer @singer_judy to a constructive dialogue, away as much as possible from twitter, of reconsidering Neuro-Diversity from the perspective of nearly three decades since the concept saw the “light of day”.

It is a rather desperate call, rooted in my unwillingness to passively witness the annihilation of a genuine possibility for progress and development, long due in the lives of autistics, individuals with autism, their dedicated families and carers. We are already witnessing the disastrous results of a derailed neurodiversity militantism, in the lives of families having had drastic, valuable government funding reductions, following biased and unwarranted lobbying by groups unwilling to see beyond subjectivism in regard of effective behavioural interventions.

This is also an invitation to all those who are willing and capable for as much as possible to lay down or bury the hatchet of past grievances and participate in such a dialogue. I am aware that many such grievances have gone too far into the realm of personal offensiveness, having maybe left irreversible emotional trauma and scars. And while forgiveness is always on option, it doesn’t come for granted. It is up to every one of us, to seek, give or receive it as individually considered, because I do not see the Stockholm Syndrome an option for cooperation.

In my title, I ask, “Is an ‘autism community’ a dangerous mirage, or a valid social construct?”

I believe that if it becomes bound to a hive-mind, with enforced, rigid language policing and taboo subjects, it is no better than an aggressively militant mob, a mockery and indeed a dangerous mirage of a dystopian “community”.

A genuine community allows for growth, change and constructive debate, where all members have equitable rights and responsibilities, aware that behind all objectivity, hide real lives of individuals with subjective ideas, behaviours and needs.

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

*later addition

-original image: https://www.pinterest.es/pin/403635185323282537/

The Autistic Maelstrom …

The_Corryvreckan_Whirlpool_-_geograph-2404815-by-Walter-Baxter

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

Aspergers and Ignorance (2)

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

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

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

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

Why?

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

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

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

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

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