Why there is a great amount of nonsense on ASD

Unknown said:

Deepthought said:

Well with increasingly shared experience, further research and more discussions ~ the ‘fuzzy’ stuff increasingly becomes less fuzzy and more clearly or even entirely defined.

Amen to that - it is a key reason for me being in this place.

Along with support and fellowship it is certainly one of the top three reasons to be here.

Unknown said:

I voraciously hoover up all anecdotes of "shared experience" or "diametrically opposed experience" from any and every aspect of my life -

After decades more usually in the of neurotypical wilderness ~ neurologically divergent oases can rather satiate autistic hungerings and thirstings for the similarities of other people’s dissimilarities, although no longer being so much an odd one out but rather more one of the crowd can take quite some getting used to for some of course, particularly if they have gotten used to being persecuted or victimised and all that involving normalised abuse.

Unknown said:

I fear the societal consequences of individuals becoming stuck within any particular echo chamber compartment - whether that be the "autism" one, or the "jingoism" one, or the "woe is me" one etc.

I am more concerned with the causality of tribalistic extremes ~ i.e., the survival of the elitist delusion involving excessive competition and regressive collaboration, where individuals collectively share in the enforcement of traumatically induced belief systems that feature them as imaginatively being to different degrees characteristically inferior, mediocre and superior to others.

Such beliefs as being inferiority complexes can only hold sway whilst the receptive capacities of the body-mind relationship are compromised in terms of having been damaged or wounded, and the protective and projective capacities are to the same extent habitually / unconsciously compensating in defensive and or aggressive ways.

Unknown said:

The world always seeks out balance - and we are all part of that world, so I try to emulate within the confines of my reality.

Or more in fact that the universe is always in the process of bringing or maintaining balance ~ rather than as such seeking it, whereas due to the traumatic disassociations of inferior, mediocre or superior character pretences ~ involving social camouflaging and personal masking ~ individuation becomes more instead the emulation of others rather than so much the balancing of the vitalising and enlightening self, as intuitively brings about experiential awareness of things to be delivered or else located or discovered. Otherwise the false selves (personae) are the behaviourally mimicked desires of others rather than directly involving the primary personal needs that actually need to be met, hence there being problems with compulsive addictions like chain-smoking for instance where the hydration of water is required rather than the dehydrating effects of yet more and more cigarettes.

Unknown said:

I am always very pleased to learn from those who are demonstrably well read and opinionated (in the most constructive and healthy meaning of that word), so I thank you for taking the time to share your knowledge in this place.

Experientially stimulated reading has always been my fascination in terms of confirmatory or revelatory vitalisations, along with also shared experiences and sharing knowledge involving which, so I am particular glad to have been of some assistance as such.

Unknown said:

PS - Your librarian sounds like an absolute legend....in my book !

She did rather help me subjectively from the 'ledge-end' of one bookshelf and onto others I might not of otherwise considered ~ such as termites and other insects architectural feats in the entomology section!

Deepthought said:

Well with increasingly shared experience, further research and more discussions ~ the ‘fuzzy’ stuff increasingly becomes less fuzzy and more clearly or even entirely defined.

Amen to that - it is a key reason for me being in this place.

I voraciously hoover up all anecdotes of "shared experience" or "diametrically opposed experience" from any and every aspect of my life - I fear the societal consequences of individuals becoming stuck within any particular echo chamber compartment - whether that be the "autism" one, or the "jingoism" one, or the "woe is me" one etc.

The world always seeks out balance - and we are all part of that world, so I try to emulate within the confines of my reality.

I am always very pleased to learn from those who are demonstrably well read and opinionated (in the most constructive and healthy meaning of that word), so I thank you for taking the time to share your knowledge in this place.

PS - Your librarian sounds like an absolute legend....in my book !

NAS83898 said:

Reverse order response.  My own autism assessment is dated 22 April 2022 and is clearly headed "Assessment of Spectrum Disorder Summery Report"

Autistic Spectrum Disorder (ASD) is a ‘medical model’ definition (and acronym) and hence the heading on your assessment summary report, whereas Autistic Spectrum Condition (ASC) is a ‘social model’ definition (and acronym) ~ given that the Government Equalities Office in 2014 recommended that all government departments and public bodies use the social model and it’s definitions; when interacting with and relating to disabled people ~ as is exemplified by the Isle of Man Department for Health and Social Care (DHSC) as follows:

The DHSC ran a public consultation between 29 April and 10 June 2022, to collect the view and experiences of our ASC community, their family, friends, and carers, and professionals who work directly with them.

https://www.gov.im/about-the-government/departments/health-and-social-care/national-autism-spectrum-condition-asc-strategy/

And as is exemplified by the National Health Service (a public body) as follows:

Autism spectrum conditions are a number of different neurological conditions that include a wide range of symptoms and different levels of ability.

https://www.cuh.nhs.uk/our-people/neurodiversity-at-cuh/autism-or-autism-spectrum-conditions/

Along with being exemplified by the University College of London, Cambridge, Toronto (Canada) and Taipei (Taiwan) (as all being private bodies I believe) in this quote from the following 2017 psychological paper:

Camouflaging of autistic characteristics in social situations is hypothesised as a common social coping strategy for adults with autism spectrum conditions (ASC).

https://pubmed.ncbi.nlm.nih.gov/28527095/

And also in the following 2020 medical paper from the University and NHS Partnership Trust of York (as being private and public bodies) exemplified it with it’s title and abstract as very pertinently on this matter stating (with paragraph breaks added by myself) as follows:

Should Autism Spectrum Conditions Be Characterised in a More Positive Way in Our Modern World?

In a special issue that focuses on complex presentations related to Autism, we ask the question in this editorial whether an Autism Spectrum Condition without complexity is a disorder, or whether it represents human diversity?

Much research into Autism Spectrum Conditions (ASCs) over the years has focused on comparisons between neuro-typical people and people with Autism Spectrum Conditions.

These comparisons have tended to draw attention to 'deficits' in cognitive abilities and descriptions of behaviours that are characterised as unwanted.

Not surprisingly, this is reflected in the classification systems from the World Health Organisation and the American Psychiatric Association.

Public opinion about ASC may be influenced by presentations in the media of those with ASC who also have intellectual disability.

Given that diagnostic systems are intended to help us better understand conditions in order to seek improved outcomes, we propose a more constructive approach to descriptions that uses more positive language, and balances descriptions of deficits with research finding of strengths and differences.

We propose that this will be more helpful to individuals on the Autism Spectrum, both in terms of individual self-view, but also in terms of how society views Autism Spectrum Conditions more positively.

Commentary has also been made on guidance that has been adjusted for people with ASC in relation to the current COVID-19 pandemic.

https://pubmed.ncbi.nlm.nih.gov/32413984/

NAS83898 said:

 All this nit picking on this topic with gobbledygook thrown in may satisfy the needs of its originators but will only add further confusion to an already confused and complex matter. 

‘Nitpicking’ describes giving too much attention to unimportant details . . . and gobbledygook in the given context describes your suspicion of their being an intention to overwhelm the audience with technically unfamiliar descriptions . . .

Yet without contextual clarification by way of examples ~ you have involved uncertainty with confusion, and suspicion with complexity, being that you had assumed descriptive criticisms were being carried out ~ when only contextual clarifications were being sought after and described.

The only word I can imagine without further clarification as being an unfamiliar technical term is ‘co-morbid’, which refers to a ‘coexisting disease’ (according to the medical model of definitions) or a ‘coexisting health condition’ (according to the medical model of definitions).

The general recommendation though when communicating with autistic people, is not to use abstract language involving generalisations so much ~ or even at all in some cases ~ but to much more instead use concrete language involving contextually specific examples, questions and answers, such as is recommended in the NAS Advice and guidance boards under the title ‘Communication tips’, and on the following website under the heading ‘Communicating With Adults Who Have Autism’.

NAS83898 said:

It's all too easy to jump to "conclusions" based on one's own availability of interpretational biases, supported by an understanding of ASD from anecdotes, or a loose subjective analysis without solid evidence.

Obviously ~ only I use my own and other people’s shared experiences in relation with evidential research involving peer reviewed findings.

NAS83898 said:

This whole topic by its nature is very fuzzy.

Well with increasingly shared experience, further research and more discussions ~ the ‘fuzzy’ stuff increasingly becomes less fuzzy and more clearly or even entirely defined.

NAS83898 said:

At my age of 77 I fit your description " having not had much or even any comparative or relative experience beyond that of their own" with regard to my autism.

I usually advise people to read the 'Complete Guide to Asperger’s Syndrome' ...by Tony Attwood, as it covers all the developmental stages of childhood into adulthood, and how the aspergenic body-mind relationship operates and is best facilitated ~ which very much helps to narratively reframe and comprehensively make sense of what went amiss socially, and how one can better negotiate or at least understand it all.

For those not into reading psychological text books, there is a simpler version titled ‘Asperger’s Syndrome: A Guide For Parents and Professionals’ ~ which is again by Tony Attwood, with the forward written by Lorna Wing who was the leading specialist who proposed and campaigned for autism to be recognised as a spectrum condition, and who also as a clinical psychiatrist and mother of an autistic daughter was one of the original founders of the National Autistic Society (NAS).

It is also or instead generally recommended that reading particularly successful autistic people’s biographies ~ such as John Elder Robison’s ‘Look Me in the Eye: My Life with Asperger's' and or Temple Grandin’s 'Thinking in Pictures: My Life with Autism', amongst quite a numeration of others.

NAS83898 said:

I don't think nit picking descriptions of this fuzzy topic are generally helpful.

I was not nitpicking; just reasonably providing and seeking specific contextual clarification upon what you have been referring to, in order that it can be better explained and understood and general knowledge as such further increased.

NAS83898 said:

You sound like my GP. 

Well I am several times qualified as Therapeutic Practitioner (TP) and most of my friends have been colleagues or still work in the Health Care and or Social Services sectors, so that might have something to do with it ~ and I was also one of those precocious early reader types who at primary school was much more into university level reading texts; with the head librarian at the local library calling me her little “Book Termite” ~ as being a play on words involving other more normally bookish children being metaphorically referred to as “Book Worms”.

NAS83898 said:

There you go based on your own biases assuming stress levels experienced by the general public are less frequent to produce higher cortisol and adrenaline levels.

Not assumptive biases, but on account of my own and other peoples health problems and corresponding medical research findings ~ such as these peer reviewed examples:

Anxiety is more common in autistic individuals than it is in neurotypical individuals (van Steensel et al, 2011, Lugnegård et al, 2011). The consensus is that around 50% of autistic people will experience anxiety that has a significant impact on their everyday lives (Simonoff et al, 2008).

https://www.autism.org.uk/advice-and-guidance/professional-practice/anxiety-autism

Children with autism spectrum disorder (ASD) tend to have more medical issues, including gastrointestinal (GI) symptoms such as abdominal pain, constipation and diarrhoea, compared with their peers.

https://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/expert-answers/autism-and-digestive-symptoms/faq-20322778

Insomnia and disturbed sleep are more common in autistic adults compared with non-autistic adults, contributing to significant social, psychological and health burdens.

https://www.cambridge.org/core/journals/behavioural-and-cognitive-psychotherapy/article/acti-an-insomnia-intervention-for-autistic-adults-a-pilot-study/E7CD767E36C8C4DE337F8CFBDD1E32B1

There is evidence that autism is related to autoimmune disease. A study found that children with autism were more likely to have autoimmune diseases, such as celiac disease, than children without autism.

https://www.putchildrenfirst.org/autoimmune-diseases-and-autism-spectrum-disorder-a-growing-body-of-evidence

NAS83898 said:

There can be many people who are not autistic while experiencing high stress levels frequently.

Of course, yes ~ given that I was not describing or suggesting otherwise ~ just that autistic people get more socially enforced grief and experience more physiological and psychological stress than is usually the case for the greater majority of the general population.

NAS83898 said:

It's these sorts of assumption that causes confusion leading to conclusions without proof.

Hence it being better to ask if there is proof before incorrectly assuming that their isn’t any.

Rules Reminder Rule 5:

"Be nice to one another and enjoy chatting with others. We encourage conversation and respectful debate; please be aware that individuals may give opinions which are not shared by other members. Insulting posts or comments making personal jibes will not be tolerated.  "

Suzanne Mod

Reverse order response.  My own autism assessment is dated 22 April 2022 and is clearly headed "Assessment of Spectrum Disorder Summery Report"

 All this nit picking on this topic with gobbledygook thrown in may satisfy the needs of its originators but will only add further confusion to an already confused and complex matter.  It's all too easy to jump to "conclusions" based on one's own availability of interpretational biases, supported by an understanding of ASD from anecdotes, or a loose subjective analysis without solid evidence. This whole topic by its nature is very fuzzy. At my age of 77 I fit your description " having not had much or even any comparative or relative experience beyond that of their own" with regard to my autism. I don't think nit picking descriptions of this fuzzy topic are generally helpful.

You sound like my GP.  There you go based on your own biases assuming stress levels experienced by the general public are less frequent to produce higher cortisol and adrenaline levels. There can be many people who are not autistic while experiencing high stress levels frequently.  It's these sorts of assumption that causes confusion leading to conclusions without proof.

"It is impossible to categorize spectrum disorders as being anything other than a broad range of character trait presentations, hence Dr Stephen Shore’s expression, "When you meet one person with Autism, you've met one person with Autism" --- agreed

NAS83898 said:

Sorry, not crossing the line of what can be considered slander---end of.

In that Slander describes the communication of false and malicious statements that damage the reputation of another; addressing the inaccuracies of peoples statements ~ or just providing examples of the types of inaccuracies involved for context’s sake ~ cannot in either sense be considered definitively as being slanderous.

If it is slanderous then why even say at all?

Sorry, not crossing the line of what can be considered slander---end of.

NAS83898 said:

Yet many view their diagnosis as their "bible" for justification of complexed actions that may involve and interplay with other complexed mental/physiological issues they may have. 

Who? Can you give examples?

NAS83898 said:

But yet we often allow ourselves to be misled by false "priests" of this topic who sound as though they know what they are saying as truths.

Again to whom are you referring?

This post needs more specific context because while I agree with some of the sentiments here other points are difficult to understand the point being outlined, and the questions at the end seem more rhetorical like a blog post than a forum post.

It all began with Francis Galton’s idea with eugenics and the “average man”. It produced what I call the pathology paradigm where pathology has been corrupted by basing it on “normal” instead of pathology itself. I basically see they designed an artificial model to compare humans to, and anyone who doesn’t fit that manmade model are seen as disordered, like was homosexuality ever a pathological disorder? No, it was socially constructed to be preached as a disorder even though it wasn’t.

When we look at “autism traits” individually we can see it is actually just general human behaviour as nonautistic people display the same behaviours, this begs the question why are they only seen as deficits when done by autistic people? Another question I ask when debating is why aren’t we trying to “cure” the difficulties of so-called normal people? I see they have trimmed so many behaviours off what I call “The Human-Ability Spectrum” and defined them as deficits. Just about every hidden disability which is explained in behavioural criteria is actually nothing but a discriminatory social construction.

Ableism has become so hegemonic in our societies that people don’t even realise when they’re been ableist.

I'm adding further to this discussion which I hope no one minds as I find it really interesting and I think about autism a lot. 

How I see it is that autism is defined as a set of observable behaviours. But in reality everything goes on behind the scenes and outward behaviour is often but not always a manifestation of what's going on underneath.  So I'm being very basic here but it might be that we have some shared systems within a spectrum of how our brains process things but a variety of ways this can be displayed and experienced.

Unknown said:

we also can't say what is "normal" for autistic people.

And heading that way, leads astray.

Channel on youtube with participants both allistic and autistic is a good idea

I've just realised that my second paragraph doesn't entirely correlate to the point you made that I quoted but I'm going to leave it in because I still think relevant. I'd like to add in relation,  I think you might be saying if we don't know "what is normal" for non autistic people, by comparison we also can't say what is "normal" for autistic people. There is such variance in both camps.

I think there's the idea that anything which deviates from the "norm" - whatever that is anyway - is classified as a disorder. It's interesting how our condition is defined by what allistic people have determined as a disorder. And also like you say "priests" on this topic (Baron-Cohen springs to mind as an example). I also don't see a lot of cross over discussion about autisyic/allistic experience for example on autistic youtube channels. If we did this could possibly put into context a bit more for both parties (ie non autistic people also may have similar problems but with a different cause or outcome).

NAS83898 said:

By its very nature spectral disorder is impossible to categorize because it is subjective to such wide variation

Where does autism begin and "non autism" end? I think the ideal would be that human behaviour is seen as spectrum as a whole with autism somewhere amongst it. I think that due to the social and communication differences, autism (whether known to others/self or not)is often seen as "other" (ie not one of the pack). The double bind I feel is that, we shouldn't need labels but then I don't know how people are supposed to get help for their difficulties if we don't have that label. Overshadowing can often happen.I think a lot of the additional problems (such as mental health related which then links to physical health) we have are not because of autism per se but because of our environment and the double empathy problem. And other difficulties/conditions etc may become intertwined.

I think as humans we like to have things in neat little boxes in our heads. Personally, I need answers for things a lot. Due to difficulties over the years and poor mental health, ive really needed to understand myself and WHY things are the way they are. But I understand this in a different way to what is labelled as deficits and behaviour related and more of a way my world is processed. We all have different experiences.  

NAS83898 said:

Autism is and will remain a proper mobius puzzle until the human brain's workings can be entirely understood.

I agree on this one however I don't think we will ever get to the bottom of it. It will be interesting to see how definitions etc change over time in conjunction with other conditions like adhd/dyslexia etc.

NAS83898 said:

By its very nature spectral disorder is impossible to categorize because it is subjective to such wide variation. 

It is impossible to categorize spectrum disorders as being anything other than a broad range of character trait presentations, hence Dr Stephen Shore’s expression, "When you meet one person with Autism, you've met one person with Autism.”

NAS83898 said:

A diagnosis of ASD is not chiselled in stone as the final word.

The final word on what contextually?

NAS83898 said:

Such a diagnosis has been determined through an analysis based on a criterion of fundamental symptoms characterising non-specific generality of ASD. Yet many view their diagnosis as their "bible" for justification of complexed actions that may involve and interplay with other complexed mental/physiological issues they may have. 

Learning the difference between autistic traits and co-morbid symptoms can be difficult to separate out for some, particularly as autistic people are more prone to particular varieties of co-morbid conditions than is the case for the general public ~ such as for example anxiety, digestive problems, sleep disorders and autoimmune complications on account of higher cortisol and adrenaline levels.

NAS83898 said:

Autism is and will remain a proper mobius puzzle until the human brain's workings can be entirely understood. But yet we often allow ourselves to be misled by false "priests" of this topic who sound as though they know what they are saying as truths. It's a non-specific spectral disorder--lets not forget that and lets dispense with their gobbledygook on this topic.

‘All or nothing’ / ‘one size fits all’ conceptualisation can be a problem for some after a life-time of having been oppressively facilitated, identified and affirmed in regard to their autistic individuality, especially when they have not had much or even any comparative or relative experience beyond that of their own.

NAS83898 said:

I do however disagree with the term "Disorder" while the question is often asked "what is normal". People with ASD are a minority but why should that be classed a disorder? Is it any more a disorder to be part of an ethnic minority? 

Autistic Spectrum Condition/s (ASC) has as such become more the standard definition / acronym these days.

And get jobs, otherwise how are you to have a life? As long as most of the time we're declined or ignored, some will turn towards those extremes.

 Until then the question of balance won't occur to many. It will only be a reaction to experiences.

I think that autistics need to find for themselves a balance between extreme medicalisation of the condition and extremist autistic advocacy.