Category Archives: Classic Autism

Reflections on the Psychopathology of Demand Rejection and Avoidance

1200px-Mud_Volcano_in_Gobustan_01[1]Honouring a long-due promise to Demand Avoidance researcher Richard Woods @Richard_Autism I will attempt to summarise a personal perspective of the psychopathology of Demand Rejection and Avoidance, conscious of the topic’s vast scientific interdisciplinarity, muddled unfortunately by rather recent research derails, causing unnecessary confusion and delays in therapeutically addressing valid psychotherapeutic necessities.

In this short article I will deliberately avoid citing/quoting any post Newson “P/E/DA” researchers, because of what I perceive as bias in their motives to establish a stand-alone diagnostic of “P/E/DA”, separate from the already existent Kanner’s and Asperger’s Autism Spectrum subcategories.

I will use instead as a lose structural frame, citations and my own personal interpretation of these citations on the topic of PDA from the National Autistic Society’s (NAS) webpage which under the “What is pathological demand avoidance?” subtitle, lists the following:

-“(PDA) is increasingly, but not universally, accepted as a behaviour profile that is seen in some individuals on the autism spectrum. (emphasis mine)

 -“This demand avoidant behaviour is rooted in an anxiety-based need to be in control.(emphasis mine)

-“the demand avoidant profile has been found to be relatively uncommon“. (emphasis mine)

-“People with a demand avoidant profile can appear to have better social understanding and communication skills than others on the autism spectrum and are often able to use this to their advantage.(emphasis mine)

-“uses social strategies as part of avoidance, eg distracting, giving excuses” (emphasis mine)

-“appears comfortable in role play and pretence” (emphasis mine)

-“Parents very often use the term ‘manipulative’ to describe this aspect of their child’s behaviour and will comment on how it seems to be their greatest skill(emphasis mine)

It doesn’t require an exceedingly vast (necessary however) mental health experience to understand and notice that nearly everything mentioned in the citations above, and also much of the source material, seems to extrapolate into a rather clear anamnesis showing similarities with subcategories of Personality Disorders.

There is a generally recognised divide between the Neurodevelopmental Autistic Spectrum Conditions which have a Genetic background, and the Psychopathological Personality Disorders which seem to have a Traumatic background, each with very much different approaches to what’s best in providing support to individuals diagnosed with these conditions.

Further, the NAS material states under “Guidelines for parents” that “tried and tested strategies used with children who have other autism profiles are not effective for their child with a demand avoidant profile. This is because people with this profile need a less directive and more flexible approach than others on the autism spectrum” which seems to me fairly similar to the approach of the Dialectical Behaviour Therapy, designed to help individuals with Personality Disorders. This in my opinion seems to be also supported in the advice by the same source that the “use of structured teaching methods, which can be useful for people with other autistic profiles if individual needs have been considered, are often much less helpful for people with a demand avoidant profile and need considerable adaptation. People with this profile don’t usually respond to structure and routine. An indirect style of negotiation is more likely to lead to them feeling the control over their learning that they need.” (emphasis mine) Again, in my opinion this appears to be in direct contradiction with what the NAS seems to be emphasising that “a person with PDA does not make a deliberate choice to not comply and they can’t overcome their need to be in control”, because “feeling the control”, negotiating and responding in an expected manner to this, does to a significant extent imply the repeated use of “deliberate” choices, not to mention the sharp contrast of this behavioural profile with the clinically proven stability provided to autistic individuals by “structure and routine”.

In conclusion, I am very much concerned that exactly at a time when the future of both Kanner’s and Asperger’s Autism research have been jeopardised by historical blunders caused by arbitrary decisions made by the respective APA and the WHO to dismiss decades of research into the differences between the two major Autism subgroups in their DSM-5 and ICD-11, scientifically questionable research is being used to include -in my opinion- primarily mental health conditions into a neurodevelopmental category.

Finally, I am genuinely surprised and deeply disappointed by the @Autism NAS’s indulgent participation in this far from clarified and at the moment highly controversial subject. Their carelessness in making unclear statements such as “PDA (pathological demand avoidance) is a behaviour profile within the autism spectrum” have already given grounds to some groups such as “The Jigsaw Tree” to claim that “Pathological Demand Avoidance (PDA) is now recognised as an Autism Spectrum Condition by the National Autistic Society.” I’m curious if the NAS @Autism would confirm this conclusion…

Maybe researchers should consider another path as suggested by Rebecca McElroy whom has noticed that “PDA describes a child who is primarily led by a need to avoid demands and control situations, struggles with social communication and relationships. However, these exact same characteristics could equally be used to describe a child with disordered attachment (NICE, 2015).”

Because in my opinion, the major difference between the Autism Spectrum and the Pathologic Demand Avoidance is that while the first is Neurodevelopmental the second is Pathological.

Ref: NICE (2015). Children’s attachment: Attachment in children and young people who are adopted from care, in care or at high risk of going into care. Clinical guideline, first draft.

Disclaimer: The interpretations and re-contextualised use of the citations from the indicated NAS website are entirely my own, and therefore do not represent in any form the official position of the NAS concerning PDA.

 

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The Cognitive-Behavioural Interpretative Isolationism of Intellectually Proficient Kanner’s & Asperger’s Autism (IPKAA)© Part 3 – The Myth of “Weak Central Coherence”

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Part 3 – The Myth of “Weak Central Coherence”

(Rev.) Romulus Campan
FdScMH, LTh (Hons), CertEd, QTS,
PgCert Special Psychopedagogy, PgCert Autism & Asperger’s

‘Frith (1989) attempted to sketch out the preliminary theory that one deep underlying cognitive deficit in autism has to do with a lack of coherence. In other words, autistic people lack the drive to pull information together into overall meaning.’ Hill (2004)

Hill seems to continue Frith’s rather hidden mentioning of the fact that while she proposes her theory as a ‘deep underlying deficit’, a door has been left open to a ‘lack of drive’ which implies a selective-volitional aspect, with what she proposes as an ‘information processing style, rather than a deficit’.
The coherence theory postulates that incoming information is usually processed in its context. Now, while acknowledging that oftentimes communicated information is meant to be processed in some context, I don’t believe that noticing ‘needles in the haystack’ while paying no interest whatsoever to the haystack’s any aspect, should be considered a deficit, but rather a valuable control asset, through which the flow of information can be monitored for systemic accuracy. And the fact that autistics may decide to ignore the context in order to gain through focus, a deeper understanding of the detail which flagged their attention, does not substantiate that contextual coherence is the required norm, but as Hill suggests, a ‘cognitive style’, which no autistic should be expected to justify, an even less to change.
I am also a theologian. This means that I was trained, and apparently excelled in interpreting textual and contextual details way beyond the newspaper reading level. And since theology should be first of all philosophy, I was given the chance to observe and contemplate, also judge and analyse thoughts hidden away, sometimes even to their writers.
Now if I would take Hill’s above quoted text, and gaze upon it just superficially, but with a rather merciless analytical rigor, I should note the following about “autism”:
-Autistic people suffer from a deep underlying (basic/fundamental) cognitive deficiency, which is lack of coherence, leaving them without the “drive” (ability/willingness/capacity?) to see/understand meaning in scattered fragments of information.
Unfortunately, “thanks” to the unmandated vigilantism of a way too noisy herd of dilettantes, whom mostly out of genuine, however misplaced concern have come to oftentimes falsely represent the entire intellectually proficient Kanner’s and Asperger’s autism (IPKAA) community, autistics without cognitively impairing intellectual deficiencies/disabilities have been left stranded at the mercies of a mercilessly mercantile “healthcare industry”, for whom the daily torture of having ALL our senses tortured, our personal space assaulted, our meticulousness abused, our silence raped and our solitude violated, means nothing because we have degrees and jobs…
So, here we are, probably the most vulnerable and exposed of us, trying to convince an already biased world that there’s no such “thing” as “simply autism”, that the Autistic Spectrum has two, fundamental categories, the Intellectually Proficient and the Intellectually Deficient, fact which shouldn’t be tampered with by semantic militias resembling more and more to editors of 1984’s Newspeak. Proficiency and Deficiency are existential opposites present everywhere from our vitamin D synthesising capabilities to our intellectual capabilities and shouldn’t be subject to any thoughtless political correctness. As most of the well-meaning, dedicated and yes, oftentimes heroic carers of intellectually deficient autistic individuals expect that those they love and care for will be given assistance as required by their specific needs, we, intellectually proficient autistic individuals expect to be listened to and assisted as required by our specific needs.
I hope to be mistaken when I speculate that the reason why the profiteering “healthcare” industry has successfully manoeuvred the not so neutral DSM and ICD into practically grinding to a halt decades of extremely promising research into High-Functioning and Asperger’s Autism by obnoxiously dropping Asperger’s as a subcategory, is the fear of having to listen to the scientifically and experientially valid opinion of a new generation of extremely capable autistic academics, diametrically opposed to the reductionist and generalising, clinically flawed stereotypes by which it’s cheaper to provide helmets to intellectually deficient, self-harming autistics, than answers to intellectually proficient, self-harming autistics.

-Frith, U. (1989). Autism: explaining the enigma. Oxford: Blackwell
-Hill, E. L. (2004). Executive dysfunction in autism. TRENDS in Cognitive Sciences Vol.8 No.1, January 2004, 26 http://www.ucd.ie/artspgs/langimp/autismexecdysf.pdf

(to be continued…)

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.