The Autistic Maelstrom …

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 10^th 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

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It’s “official”, I am Actually Autistic…

Since my last post in June, (I hope 😊) you might have noticed my absence, with only some misty mentions of having been withdrawn in my academic shell, and some even more elusive ‘reason’ for delaying more new posts…

The truth is that I have indeed managed to (I again, hope 😊) successfully complete the very last of my university exams, looking therefore forward to my third degree, this time in Mental Health, and also to November, when I should start my PgCert in ‘Autism and Asperger’s’ at Sheffield Hallam University.

The other, more ‘elusive’ reason, mentioned only in a few, sporadic comments, had actually to do with the outcome of my formal diagnostic assessment for ASD, following sessions in March and June. At the mid-June appointment, the clinician informed me that according to her assessment, I am on the Autistic Spectrum, with a complete diagnosis letter to follow. However, since one of my very specific autistic traits is always following a strict, sequential order of events, I decided to disclose all this, only after receiving the formal letter.

Unfortunately, due to unpredictable circumstances, I received my seven pages formal diagnosis letter only today, of which what matters to me is a clear diagnosis of ASD, specifically “Asperger’s Syndrome […] as described in ICD-10″.

The letter is clear and concise, showing a precise understanding of both what I’ve said, but also what I haven’t, a professionally exact observation of aspects of my non-verbal communication, and to my honest surprise, the mention of my own, several pages long, detailed symptoms summary, which the clinician did consider in my diagnosis.

When asked in June about how do I feel finding out to be Autistic, my first thought was, “angry”…

Angry, about everything I couldn’t do because the “world/society” decided that the way I see, I understand, I feel, I act, I think, I walk, I exist, doesn’t matter outside its own, arbitrarily imposed set of rules for a “greater good/picture” type of forced cohabitation.

But then a second thought emerged, that of “relief”…

I know that “formal diagnosis” is a divisive subject, with personally justifiable pros and cons. In my (un)humble opinion though, a formal diagnosis should be considered rather as a shield, a protective barrier against what may be “societal rules” for the majority of neurotypicals, but are surely experienced as an ongoing abuse by most neurodivergents. In other words, if they want me to live in their world, I am entitled to be shielded against what they consider normal, which is nevertheless utterly abnormal for my brain structure, for me… And yes, for some neurodivergents, the words disorder and syndrome have negative overtones, however, I respectfully agree to disagree with their position. Because since I must live on a wrong planet, I’ll proudly accept the protection I am entitled to, in order to preserve and safeguard what I consider to be my non-repeatable uniqueness.

And if you may wonder what’s that blank Rubik cube about, it’s my unique way of understanding and accepting the only logical use of that cube’s structure, which leads back to its basic structure with each move, without any unnecessary twist of rearranging a pattern of colours deranged with no valid logical reason, besides planning to rearrange them…

Because circular reasoning is not at all a valid form of reasoning.