Tag Archives: 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 lives of pines…

Solitary autistic pine

I was born in Northern Transylvania’s Maramures, at the feet of majestic mountains, covered by ancient, noble forests, with their trees as brothers to us, and sisters. Strong beeches, venerable oaks, solitary pines, imbued with the crystalline waters of pure streams …

It’s the pines which fascinated my people for millennia, giving us our cradles, our tables, out beds, the pillars of our gold mines, and the coffins of our passing away.

Now, anyone seeing lots of pine trees may think it’s a forest, but they’re not…

Pine trees are solitary. Pines are #autistic

Always alone but never lonely, with one purpose, to reach ever higher, leaving behind as time passes by, as the crown moves upwards, dry, broken branches, like thorns awaiting for the careless passer by…

You see, the life of pines is in their roots and in their evergreen tops, the painful reason why you can’t embrace a pine tree except maybe when it’s young, a child. As it grows older, the crown moves upwards, leaving the naked, dried broken branches around, hurting anyone coming too close…

There’s a secret though…

If one is clever enough, they might find looking upwards to the green crown, a path in the dry broken branches like a ladder, leading the brave to the top. There, there are no sharp branches, just velvety fresh green fragranced new branches, allowing to be embraced and loved… Pines love only those daring to come close enough and climb to find who they truly are. And in exchange, they give something only pines can give, because they always return the careful touch and the embrace. They bleed the most beautifully perfumed resin, coloured of amber, smelling of frankincense, and the stronger the touch, the longer the embrace of the brave who wants to love them, pines bleed more resin, binding them as lovers to themselves, forever…

And when our time has come, we remain standing, calling out in stormy nights the final touch of heavens, the kiss of one last lightning, burning like torches, illuminating the paths of wandering lovers…

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)

 

 

Ninth of Asperger’s Ten Traits – “Feelings and other people’s actions are confusing”

pendulum (2)

“9) Feelings and other people’s actions are confusing. Others’ feelings and our own feelings are confusing to the extent there are no set rules to feelings. We think logically, and even though we are (despite what others think) sensitive, compassionate, intuitive, and understanding, many emotions remain illogical and unpredictable. We may expect that by acting a certain way we can achieve a certain result, but in dealing with emotions, we find the intended results don’t manifest. We speak frankly and literally. In our youth, jokes go over our heads; we are the last to laugh, if we laugh at all, and sometimes ourselves the subject of the joke. We are confused when others make fun of us, ostracize us, decide they don’t want to be our friend, shun us, belittle us, trick us, and especially betray us. We may have trouble identifying feelings unless they are extremes. We might have trouble with the emotion of hate and dislike. We may hold grudges and feel pain from a situation years later, but at the same time find it easier to forgive than hold a grudge. We might feel sorry for someone who has persecuted or hurt us. Personal feelings of anger, outrage, deep love, fear, giddiness, and anticipation seem to be easier to identify than emotions of joy, satisfaction, calmness, and serenity. Sometimes situations, conversations, or events are perceived as black or white, one way or another, and the middle spectrum is overlooked or misunderstood. A small fight might signal the end of a relationship and collapse of one’s world, where a small compliment might boost us into a state of bliss.”

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

I must confess it took me time to accept that EVERY SINGLE THOUGHT of the emotional maelstrom summarised in Sam’s 9th Asperger’s Trait, is not a picture I contemplate, but a movie I’m living…

I urge my reader(s) to read it carefully and slowly, simply because understanding is a first step towards the self-acceptance of ultimately who you are as an autistic individual, entitled to at least as much societal acceptance, as the amount of effort expected of you, from an environment which somehow always fails to invite autistics when setting its rules…

In my case, emotions oftentimes exist as extremes of a capricious pendulum, and I have emphasised capricious purposefully, because the dialectic motion-confinement of a pendulum doesn’t seem always acceptable to the neurobiological autonomy advocated by my brain. You see, a pendulum is predictable, bound to return onto its own origin every time it leaves it, until friction has its last word. Sometimes however, my pendulum just freezes, having decided not to return anywhere, because as much as Asperger’s and Autistics are inclined to routine and patterns, the final touches of every e-motion’ are dictated by details imperceptible to neurotypicals, each such attribute presenting itself as an indispensable cog in the refined machinery of our emotional displays. And if you think that these cogs are some standardised items floating around awaiting to fall in some specific spaces, well, you may be wrong…

Exempli gratia, think of these cogs as rather aggregated molecules of water, always H2O, but “expressing” themselves in shapes and forms depending of the environment, but ultimately influencing it, changing it…

Remember the boiling water from your home kettle, so indispensably helpful to your tea, but so devastating on your skin; or the soothing embrace of your favourite beach’s waves, becoming cruel undertakers for a sinking ship; or the cooling rain soaking the thirsty grain fields, just to turn into murderous fist sized hail-stones underneath a cold cloud, and the list could go on forever. That’s exactly how the autistic emotional responses will be shaped by unaware, oftentimes ill intended individuals and their approach to Asperger’s and Autism.

So, remember, if the water-cogs of my neuro-biologically predisposed surprised/confused reaction, encounter your frozen/patronising/demeaning attitude, don’t be surprised to find snow on your shoes, ice under your feet, on your way out of my phonebook…

Eighth of Asperger’s Ten Traits – “Trapped, […] pretending to be normal”

Faceless_Rebel_Morph

“8) We are ourselves and we aren’t ourselves. Between imitating others and copying the ways of the world, and trying to be honest, and having no choice but to be “real”, we find ourselves trapped between pretending to be normal and showing all our cards. It’s a difficult state. Sometimes we don’t realize when we are imitating someone else or taking on their interests, or when we are suppressing our true wishes in order to avoid ridicule. We have an odd sense of self. We know we are an individual with unique traits and attributes, with unique feelings, desires, passions, goals, and interests, but at the same time we recognize we so desperately want to fit in that we might have adapted or conformed many aspects about ourselves. Some of us might reject societal norms and expectations all together, embracing their oddities and individuality, only to find themselves extremely isolated. There is an in between place where an aspie girl can be herself and fit in, but finding that place and staying in that place takes a lot of work and processing. Some of us have a hard time recognizing facial features and memorize people by their clothes, tone of voice and hairstyle. Some of us have a hard time understanding what we physically look like. We might switch our preference in hairstyles, clothes, interests, and hobbies frequently, as we attempt to manage to keep up with our changing sense of self and our place. We can gain the ability to love ourselves, accept ourselves, and be happy with our lives, but this usually takes much inner-work and self-analysis. Part of self-acceptance comes with the recognition that everyone is unique, everyone has challenges, and everyone is struggling to find this invented norm. When we recognize there are no rules, and no guide map to life, we may be able to breathe easier, and finally explore what makes us happy.”

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

One of my most intriguing oddities (and I started to adore them all, even when they’re naughty) is the constant failure to recognise my colleagues outside work. Working in a hospital environment requires some sort of uniform, which together with the background provided by the site’s micro- and macro-environment, form the “picture” which an autistic brain memorises.

Now, that wouldn’t be a problem for the neurotypical individual, but it does become a major one for the neurodivergent, because as Samantha brilliantly mentions in her article, autistics seem to memorise people by anything else but their faces. And this oddity doesn’t become obvious until one day, a colleague tells you with a smile/smirk on their faces, that it’s not nice to pass them by at the mall, or another has to stand in your way, looking rather puzzled for the “embarrassing” time your brain needs to remove the previous details from around their faces, implementing them into the new environment, finally triggered by their perplexed voices asking you why would you pretend not to see them?

Been there, done that, now and again, and again, and again…

But the worst of it all, is the involuntary compulsion to act “normal”, switching automatically to puerile excuses of not having seen them, having a headache, being tired, being busy, etc, none of them actually true.

What I am step-by-step realising, is a uniqueness I don’t want to give up anymore, an increasing desire and practical moves to “reject societal norms and expectations all together”, “embracing my oddities and individuality”, caring less and less about finding myself “extremely isolated”, because if that means getting finally isolated from the vain, abusive, infatuated stupidity of “normal” societal details thinking that seeing me is knowing me, it’s more than welcome.

After all, if I am autistic, my world should be myself…

Stimming (Self-stimulatory Behaviour / Repetitive Stereotyped Activity) – 1

stimmers (2)

In her seminal book “The Autistic Spectrum” (1996), Lorna Wing, OBE, FRCPsych, described what she identified as Repetitive Stereotyped Activities, to be “the other side of the coin of impairment of imagination” (pg. 45). The Autistic community has come to embrace the term stimming (as the shortened form for self-stimulation), which unfortunately acknowledges only one of Wing’s identified types, the simple ones, as these activities were further categorized as simple and elaborate. As she explains, “the simplest forms of these activities involve repetitive sensations” such as:

-tasting

-smelling

-feeling or tapping or scratching different surfaces

-listening to mechanical noises

-staring at lights or shiny things

-twisting and turning hands or objects near the eyes

-staring at things from different angles

-switching lights on and off

-watching things spinning or self-spinning

Sometimes, especially when “someone has no other way of occupying themselves“, self-injury can become a repetitive behaviour.

As I mentioned in one of my previous articles, Stimming vs Fidgeting… I believe there is a fundamental difference between fidgeting and stimming, with stimming as a mainly autism-specific Repetitive Stereotyped Activity.

In an attempt to make this article more ‘user friendly’ I’ve photographed some of my favourite stimmers (a term I use and suggest instead of stim-toys), a small American-football and two different hand strengtheners, one of rubber and the other as a small mechanical contraption, with a fountain pen as a dimension guide.

First of all, allow me to explain why I suggest stimmers. One of the reasons is the unnecessary association with toys in general which automatically follows the use of stim-toys, and the other being an even more unnecessary association with ‘toys’ of a more ‘adult’ nature…

Secondly and probably unknown to many, the word stimmer means in German amongst others tuner, used to tune musical instruments.

Now, as I explained in my  Stimming vs Fidgeting… post, stimming is fundamentally different from fidgeting because it requires the individual’s dedicated attention, and somewhat similar to a tuner, it seems to help the individual tune their sensory, cognitive and behavioural functionality.

For example, you may notice in the picture of my stimmers, that due to their material structure, they have particular surfaces, some smooth and soft such as blue rubber strengthener, rough and soft such as the small brown ball, cold and smooth such as the metal coil, strong smooth such as some parts of the mechanical strengthener or strong and rough such as other parts of it.

One may think that these differences are negligible, which may be the case for fidgeting, but not for stimming, because -at least in my case- the surface structure follows a typical need which cannot be met by any structure, but only specific ones. When I use for example, the blue rubber stimmer, my four thumb opposing fingers automatically seek the comforting ‘feeling’ provided by the four small velvety depressions found on one of its sides, and while the thumb provides support, the other four fingers are becoming anything in between trumpet key dancers and Morse code transmitters, and the choreography is endless.

In an autistic’s hand, an object becomes an objective, an instrument which tunes the complex functionality of the autistic brain, with its unusual capacity to process sensory stimuli in more areas than the specialised neurotypical brains.

 

A next post will cover the Elaborate Repetitive Stereotyped Activity, or stimming…