Monthly Archives: September 2017

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

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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.

Tenth of Asperger’s Ten Traits – Functioning nearly executes us…

Exec Func 2

“10) We have difficulty with executive functioning. The way we process the world is different. Tasks that others take for granted, can cause us extreme hardship. Learning to drive a car, to tuck in the sheets of a bed, to even round the corner of a hallway, can be troublesome. Our spatial awareness and depth-awareness seems off. Some will never drive on a freeway, never parallel park, and/or never drive. Others will panic following directions while driving. New places offer their own set of challenges. Elevators, turning on and off faucets, unlocking doors, finding our car in a parking lot, (even our keys in our purse), and managing computers, electronic devices, or anything that requires a reasonable amount of steps, dexterity, or know-how can rouse in us a sense of panic. While we might be grand organizers, as organizing brings us a sense of comfort, the thought of repairing, fixing, or locating something causes distress. Doing the bills, cleaning the house, sorting through school papers, scheduling appointments, keeping track of times on the calendar, and preparing for a party can cause anxiety. Tasks may be avoided. Cleaning may seem insurmountable. Where to begin? How long should I do something? Is this the right way? Are all questions that might come to mind. Sometimes we step outside of ourselves and imagine a stranger entering our home, and question what they would do if they were in our shoes. We reach out to others’ rules of what is right, even in isolation, even to do the simplest of things. Sometimes we reorganize in an attempt to make things right or to make things easier. Only life doesn’t seem to get easier. Some of us are affected in the way we calculate numbers or in reading. We may have dyslexia or other learning disabilities. We may solve problems and sort out situations much differently than most others. We like to categorize in our mind and find patterns, and when ideas don’t fit, we don’t know where to put them. Putting on shoes, zipping or buttoning clothes, carrying or packing groceries, all of these actions can pose trouble. We might leave the house with mismatched socks, our shirt buttoned incorrectly, and our sweater inside out. We find the simple act of going grocery shopping hard: getting dressed, making a list, leaving the house, driving to the store, and choosing objects on the shelves is overwhelming.”

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

Again, adding anything to Sam Croft’s brilliant detailing of the incredible stress caused to individuals with (HF)Autism and Asperger’s by what “others take for granted”, is hardly possible.

Being blessed/cursed with an intellect way beyond average and having stopped apologising about it especially to neurotypicals who think that being smart means wearing certain (otherwise stupidly uncomfortable) clothes, I decided to use my neurobiological compulsion for honesty, for openly appreciating or criticising what’s worth my time and effort…

Well, in Samantha Croft’s case, I hope to have repeatedly made myself loudly clear about how pleased I am to take a bow as many times I read The Ten Traits, considering it a proper diamond in the hard nutshell of understanding the unique individuality of Asperger’s, wholeheartedly recommending it to anyone having started to understand first of all their own, or their loved ones’ neurodivergence.

What’s left for me to write? Some of my own experience, following Sam’s lead.

-“to […] round the corner of a hallway” – Blessed art thou, who don’t need to go around the corner of a simple hallway, firstly by significantly slowing down your pace, secondly by following your path by nearly rubbing your shoulder against the wall opposite that corner, and thirdly even so, managing sometimes to bruise your corner’s side shoulder against it. And if there’s no corner, there will be an open door, the same armchair, coffee table, anything which should be somewhere else… And if there’s nothing in your way, your brain will desperately attempt to find a pattern-like structure to align itself by, in which case everything returns to square one…

-“Some will […] never parallel park” – So here’s my problem: every time I attempt to park my car between other cars, my brain gets short-circuited between using as a reference my door’s inferior window frame, the cars on each side, the cars in front/behind me, continuously disturbed by the crisscrossing pedestrians, the very annoying  but vital noise of my car’s parking sensors, and on top of all my occasional, all-knowing passenger who genuinely wants to help, and for whom I’m thinking of installing a badly needed “eject seat” button…

-“We may have Dyslexia…” – and also Dyspraxia, and Dyscalculia, and Irlen Syndrome, but that doesn’t seem to exclude mastering several languages, several degrees, several musical instruments.

Is there anything else left to say?

Yes:

Aspergers and Ignorance (2)