Category Archives: Neurodiversity

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)

 

 

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…

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

R cube LibThink

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.

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…