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Autism from the inside


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Autism and Anti- Bullying Week – Advocating & Acknowledging Different Autism “Fruit Salads”

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The word “autism” is a describing adjective of and “experience” and multi-layered condition of “conditions” a “fruit salad” as the late Donna Williams had noted from looking at her own autism and observation of others through her consultancy work.

So with that in mind what can bullying be down to? Many factors of course can be noted such as perceived vulnerability and/or threat, a noted and/or varied amount of insecurities within the bully themselves and of course any other contributing environmental factors that propel and/or ignore or not acknowledge that bullying is happening so what can be the contributing factors? Within in a person’s “autism fruit salad”?

Social emotional agnosia

This is to do with social perception so if someone doesn’t read body language, tone of voice or facial expression all they have left is facts this could lead the person to being picked on, left out and struggle to integrate into conversations between their peers and/or left overwhelmed.

Simultagnosia (Object blindness) & Prosopagnosia (Faceblindness)

The person may perceive things in pieces and not wholes making visual tracking of the environment difficult to manage meaning they are “lost” and struggle to find connections and visual coherence.

They may also have faceblindness as well meaning blindness meaning that bounding with the peoples via their peers faces is difficult. Leading to errors in communication and not knowing who people are, this may lead to teasing and/or bullying by their peers.

Semantic Agnosia (Meaning blindness)

Seventy percent of information is visual so what if a person on the spectrum is only using thirty percent information to perceive? They may use their hands, feet, tongue and body to externalise their surroundings in order to internalise, this includes objects and people.

As this system may not be fully understood by their peers around them it may lead to social misunderstandings, fear and/or exclusion due to a person being highly tactile.

Integration of “Self and Other”

Some people with autism may struggle with a “shared” sense of “social” the developmental underpinnings are to do with development of language and possibly having a more multi-tracked system of bringing together multiple forms of information at once.

So the person may only be able to do “all self no other” meaning the person may seem to not listen to others and project, and/or not project and not answer when it’s the other way round “all self no other” this could lead to teasing because of the lack of fluency between the “switching” by peers.

Meaning Deafness

Differing levels of language processing means that the person may not be able to keep track of what is being said, its relevance and or significance. If the person is resorted to just hearing “sounds” and not bridging the sounds into “meaning” the person may struggle with interpretive language.

Exposure Anxiety

EA was first described by Donna Williams in her book “Nobody Nowhere” in 1991 and later and hand book on the condition in 2003. EA creates involuntary diversion and retaliation responses when a feeling of “exposure” is triggered the nervous system then reactions with such responses as echolalic litanies (that go nowhere), spitting, hitting (others and/or themselves), swearing, running away and/or freezing (mutism).

People are directly confrontational in their language to one another with EA the person may benefit from an indirectly confrontational approach. Peers may be baffled on/or even confused by the differing responses this may lead to being teased, left out and picked on.

Other Things To Consider

  • Personality Types
  • Learning Styles/Variations
  • Dietary Disabilities
  • Mental Health Co-Conditions

Conclusion

If we are looking at advocacy we must first look at all perspectives of what is being experienced by the person on the autism spectrum and their peers and bringing a hopeful inclusion tailored by

  • Information sharing
  • Perspective taking
  • Healthy validation 
  • Inclusion

Advocacy of Autism as a “Fruit Salad”

By looking at the multifaceted nature of the word “autism” one must look beyond the stereotypes, beyond the rhetoric and once people open up to being healthily challenged, empowered and acknowledged then we can look forward to the future.

Links

Books

Nobody Nowhere D.Williams 1991

Exposure Anxiety D.Williams  2003

Autism: An Inside Out Approach D.Williams 1996

The Jumbled Jigsaw D.Williams 2005

Living Through The Haze P.Isaacs 2nd Edition 2016

Understanding & Supporting Autistic Students In Specialised Schools P.Isaacs 2013

Blogs

What is Autism? D.Williams 2014

Differences Between Aspergers and Autism “Fruit Salads D.Williams 2012

There Are Two Types of “Social Emotional Agnosia P.lsaacs 2018

Visual Perceptual Disorders In Children With Autism D.Williams 2011

Tinted Lenses, Visual Perceptual Disorders and Bridging The Gap Between “Non-Visual and Visual Worlds P.Isaacs 2017

Was Michael Jackson autistic or one of the most famous people with Exposure Anxiety? D.Williams 2009 

Link to Original Article Anna Kennedy Online

Paul Isaacs 2018


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Autism – The Crossover from “Sensing” to “Meaning”

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Note this is from a personal perspective

Talking yesterday to friend about speech and language I thought it was interesting to see progression the inner feelings of someone who has gone through significant challenges in receptive and expressive language. I can remember a whole host of disconnected emotions that came flooding towards my person when speech slowly developed in terms of expression, a whirl wind of patterns, phonics and placements in my collective unglued memory and figured out by the ages of eight a system of external placement, phonic placement and movement sequences that helped me connect with the outer world around me.

However what was challenging from both emotional and integration point of view was taking a step away from the system of “sensing” (Donna Wiliiams 1998) a state of pre-consciousness, patterns, thematics and “feelings” that answered and questioned, that supplied and didn’t demand, that sang but didn’t shout, that gave and took in relevance of the moment it was captured. A place which “being” was the name of the game and “storing information” was redundant and futile.

It was a world in which in my own way I had found connects through external sensory modulation as explained so switching my “systems” was much a painful and frustrating experience as I can ever remember my connected chatter annoyed and scared me and the connected words would then bring upon the attention of connected response to which I was not readily to respond.

So was it like losing a friend well at that point yes I was making subtle yet significant transition into the world of interpretation, cladding, hierarchy and applied meaning for someone who was profoundly meaning deaf and meaning blind to those concepts it certainly makes sense why I wanted to “go back” into a world of “sensing” it was in reflection both a prison and sanctuary, solitude and disarray and home and wilderness all at once.

We (human beings) all come from the system of “sensing” however my personal experience is being “there” for a longer allotted period and many ways I am still there with reflective gaining and personal developmental progressions that have come with it.

Paul Isaacs 2018


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An “Autistic Mind?” Really?

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Stretched along a small fractional time-span of life which I have lived in comparison to the elders around me, I sought to wonder my inked mind of swirlyness in which fragments put out of the ghost-like fog like bearing lanterns in London in times of old.

My mind is blocked in certain areas of passage but not as much as it used to be in terms of having a “seeing mind” and “hearing brain” that boggles with pre-filtered thoughts that extract readily through my fingertips as if a giant piece of knowledge was wailed with me knowing why or what it is used for.

I would say if anything my mind is “human” as subjective as a term should be, but never the less as true as the sun in the sky and the forests in the wood that is in mind at the heart of the matter, the core that runs the coils, the heart-mind that beast my inner cavern of light and darkly thoughts .

My eager soul is not wanting the when whole cake of me to be seen as “autistic” because in the end if you had an “autistic cake” would it really just taste of “autism” I think it tastes of so much more drenched a mouth of fruitful flavoursome differences that colour my being stretched on a canvas of existence.

Paul Isaacs 2018


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Autism – Communication Beyond Speech? Sensing A System Before Interpretation With Sharon King

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Sharon King Speech is only the tip of the iceberg. There are many more ways to communicate

Paul Isaacs I have had many a good conversation about Sharon with regards to the “system” of “sensing” a world before “you”, “I”, “self”, “ego” etc. All human beings go through this developmental phase some people on the autism spectrum stay (to varying and differing degrees) in this framework. A world before cladding and concepts that build on to some degree intellectual understanding vs. introspection. If someone is still in this system they may well pick up on things/situations/emotions that are raw, they may see other functions for things rather than its “interpretive use”. 🙂

Paul Isaacs For example I would use the toilet an its flush system as a “toy” a place to contextualise, a place to feel and get “sensory/chemical highs”, I used shaving foam, litres of bubble bath to create patterns on the tiled surfaces for hours and hours, would/do take in the smells of nature around, its textures, its feeling. I have learnt that some people want to know how you are feeling this moment, at this time and in which order that doesn’t make their system wrong as it is system they are using just as much I am using mine so I think there are more degrees of humanity between people who are on and off the autism spectrum than people actually think. Boxes only muddy the issue. I also think there are many people off the spectrum who live in this system of sensing as well.

My World = One’s Own World. This is our first world. Before all of its later cladding and contortions, it is at first a place of sensing, beingness, the preconscious mind and unknown knowing. It is the place where we understand self in others and others in self through the skill of mergence.

The External World = The physical world known through our sensory experiences as processed through our bodies/brains and experienced as sensations, thoughts, emotions, connections. This is a directly hands on world where sensing and beingness may be relatively strongly intact.

The Interpretive World = the world of applied meaning to incoming experiences that progressively builds mental structures and frameworks that ultimately filter our direct sensed experiences of the physical world and develops conscious mind as the primary guide.

Ego World = Ego contortion that further clads, alters and filters the logical meaning we get from experiences of the physical world and further buries our original capacity for sensing and beingness. This can be indoctrination, culture, economics, identifications, rewards, honed addictions and competition for social, economic, cultural ‘currency’.

Donna Williams

Sharon King Sometimes I wonder if feelings are more real than the external reality as they are our first point of contact being ‘within’ and everything else is ‘without’ to be filtered through our senses.

Paul Isaacs I FEEL before I interpret so its almost like a translation with knowing on a conscious level translating. The main difference I see between auties and aspies is the the system of sensing (to some degree) is far more “there” this also is taking into account the information processing blockages that come with that.

For example my Father is very much OPPOSITE he build up frameworks first, concepts first and then feeling and reflections come second. Its in the end a differing system of understanding information around you.

Paul Isaacs 2018


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Daisy King, Kabuki Syndrome and Autism

Daisy Image 2018

 

I first met the endearing Daisy King when I done consultancy work at The King’s home about two years ago, we have since become friends.

Daisy King is in the later years of teenage hood and is very charming, warming and loving to the people she meets. She does not have verbal speech however she shows her wants and needs through tonal modulation, directing the person, objects of reference and gesture.

She has low muscle tone (which is a feature of the syndrome) but that doesn’t stop her from wanting to get around to meet people, play with them or go for a walk with her friends and family, she has problems with feeding but has a tremendous appetite, she has her person care needs met by her family and big sister Rosie. She is loved and shows it in a give and take fashion.

Sensory Perception, Meaning Blindness (Semantic Agnosia)

I was 19 when my ex-shrink declared from across the room, ‘You have agnosia’. We’d evolved into a friendship thing and I guess in my years as her patient she didn’t have a shelf of objects in her room so had never really seen me handle them. But here I was with a rubber thingy in my fingers upon which was balances a hollow tube like structure which made a good sound when tapped. I had suddenly declared ‘this is a baby’s bottle’… probably fairly obvious to most given this woman had a toddler, but to me this mysterious structure was something of unchartered territory though it’s likely I’d encountered hundreds of them in my 19 years of life by that time, let alone grown up with one. But that’s visual agnosia for ya (semantic agnosia).

Donna Williams

Daisy seems to be meaning blind so externally explores around her liking to connect people through touch, pressure. If one doesn’t have a level of visual “recall” it would make sense that she explores people and objects in this fashion to get a “reality” other than “seeing” despite her eyes working.

Sensory Perception, Object Blindness (Simlutagnosia)

As a person who grew up with inability to simultaneously process my visual world, leaving me seeing everything bit by bit, context blind, face blind, often also semi object blind, I feel visual perceptual disorders played a significant role in my learning, development and inability to also gain receptive language processing or functional speech until late childhood. But what weight might visual perceptual disorders alone play in the development of someone’s autism?

Donna Williams

When your visual world is so distorted, lacking interpretive meaning and “fragmented” Daisy shows many clever signs of trying to get coherence from the visual world around her she will twiddle, spin and balance objects creating movement for people with an array of visual perceptual disorders objects may be “dead” when there is no movement and/or sound present. She also at times looks out the corner of her eyes using peripheral vision because it is easier to process and percieve rather than central vision which causes the distortion.

Daisy and Paul 2018

The “System of Sensing”

The realm of sensing is the place we have all come from: that world before mind was thought of as ‘me, before body became ‘mine’, that time when we ‘knew’ because we FELT the nature of things, the feel of them- when we sensed. This was before we had learned to interpret and see the world not as it was but through our concepts and ideas of what it was.

Donna Williams

When someone is in the system it often gets confused (because of the external “behaviours” and presentation) as someone who has a “low intellect” I challenge this because if the system is still present that means that the person is taking in the information around them but is “feeling” rather than putting it into other more “interpretive” framework.

Daisy seems to live very much in this system in terms of her interpersonal relationships with her family and friends. She is fun, cheeky, outgoing and shares her Mum’s idiosyncratic personality and mercurial personality.

In the end she is a human being living and loving life. 🙂

Paul Isaacs 2018

 

 


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A Journey With Exposure Anxiety

Exposure Anxiety comes in 3 levels:

  • Specific: Targets only specific environments, activities and interaction with particular individuals.
  • Generalized and other-directed: Effects all areas of life which directly involves others.
  • Generalized and both self and other directed: Effects all areas of life which directly involves others but is also present when alone.

Copyright Donna Williams 1991, 2003, 2008

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Residual “Exposure Anxiety?

If we think about exposure in a residual (non syndromic sense) those moments of embarrassment, aware of being aware, aware of your own self-awareness of the situation meant that you froze clamed up or even ran away meant that this “feeling” you wanted to escape, remove, and disappear.

 A Personal Look at Exposure Anxiety And Me

If you turned the “volume-up” on this condition you may find that it fits in the realms of being called “Exposure Anxiety” a feeling on a chronic level that falls into the three subtypes above. I would say that in my early years I had the 3rd one throughout my child and teenage hood as I grew into my twenties and was at the tail end of being employment in my mid teens I was thrust into a world of expectation from a social perspective that in many ways never let up. I never the less “kept going” and now at the age of thirty two I can say that the claws of this condition have shortened, nails smoothed and hands made smaller.

I would say it has an impact on me in specific areas so that is going from 80% to now at a more comfortable 30% and below I can show more of “myself”, be, share and talk in a more “connected manner” than I did even 10 years ago. Other things have changed to my environment, my purpose, life is but a rolling journey and that is the joy we can all celebrate and question at different stages in our lifetime.

My information processing being meaning deaf and meaning blind have changed, the tints have aided in those areas of visual perceptual challenges, and my meaning deafness is around 30% so I can keep a better track on conversation around me. My emotional processing and perception are still delayed that is a work in progress and I seek not to compare but to be the closest version of “me” I can be.

When we look at other people’s autism “fruit salads”, we begin to wonder what is the “driver” to what I am seeing? Is it sensory perceptual? Is it dietary disabilities? Is it seizure related? Is it emotional perception? Is it language processing? Etc. By looking at the person’s “systems” you are dealing into those areas of honest and humble questioning, what will you find and how will you adapt?

Common Threads Of Humanity?

Do people with autism have much more in common with those without? My answer is yes they do the only difference is the areas of that person’s “autism” that is challenging some to smaller more residual degrees others to more severe and/or profound degrees it is not the matter of it being a linear spectrum from “classic” autism to “asperger’s syndrome” but the also the palette of grey and what is specific to that person is what matters. All human beings have “system” it may be just that I have taken the time (which anybody could choose to do in my circumstance) and work out “what that is”.

Looking At People As People?

If one ignores the poison of the autism militancy which is political and unhelpful in its projection and reasoning one must look at the person and what “autism” is for them and means for them.

Paul Isaacs 2018


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Exposure Anxiety & Autism

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Exposure Anxiety was first written about in Nobody Nowhere in 1991 as a syndrome of involuntary and compulsive avoidance, diversion and retaliation responses.  A large section of my first text book, Autism; An Inside Out Approach in 1996, was dedicated to setting out strategies for managing, even reversing Exposure Anxiety.  In 2003 I wrote the first full book on Exposure Anxiety.

Published in 2003, Exposure Anxiety; The Invisible Cage of Involuntary Self Protection Responses, is the first ever text book by a person diagnosed with autism specifically focusing on co-morbid anxiety and impulse control disorders effecting those on the autistic spectrum.  It offers an innovative new approach to working with some of the most challenged people on the autistic spectrum.

Drawing on an ‘Indirectly-Confrontational’ approach, this 336 page book gives case studies and a wealth of strategies to reduce and progressively overcome the compulsive and involuntary avoidance, diversion and retaliation responses of Exposure Anxiety.   Exposure Anxiety is an ‘Invisible Cage’ that challenges the person to either side with it and identify self with their own compulsive self protection responses.

There’s is considerable overlap between Exposure Anxiety and conditions such as Pathological Demand Avoidance (first diagnosed in 2008), Oppositional Defiance Disorder (first in the literature around 2002), Avoidant Personality Disorder and Dependent Personality Disorder.  With this book actually written from an Inside-Out Approach, by someone who actually lived their entire life with and ultimately managed then overcame the condition, those looking for strategies for managing and reducing these conditions may find this book extremely useful.

Donna Williams

Motivational Differences Between Pathological Demand Avoidance Syndrome & Exposure Anxiety

As someone who has lived with chronic EA all my life this certainly different to PDA who may tolerate an audience (in a social context) I do not while with PDA is triggered by DEMANDs. I am triggered by EXPOSURE which is completely different in terms of motivations.

Exposure Anxiety, Personality Types & “Triggers” 

People with EA have a lack of sense of “self” this it true people with EA may see their condition as the very barrier to showing other’s themselves. I like my own company so naturally being solitary that isn’t a problem, also a lack of sense of self can be seen in people who are mercurial and fear loneliness (real or otherwise) those personality types I have.

If you wanted to want, wanted to be, wanted to co-exist but your EA was crippling you from doing so because of being noticed, awareness of existing etc, that would mean you were in a hidden battle a battle happening when nbeing triggered by the co-existense of other people, with the WANT and the  EA being in polar opposites and it being seen as ego dystonic.

ego-dystonic [e″go-dis-ton´ik] denoting aspects of a person’s thoughts, impulses, attitudes, and behavior that are felt to be repugnant, distressing, unacceptable, or inconsistent with the rest of the personality. See also ego-syntonic.

In EA you can have chronic, diversion, retaliation responses which in my case were running away, freezing, selevtive mutism (once functional speech came) and shutting down when people were expectant of response, expectant of a reaction and expectant of one’s own existence. Did that mean I would hurt the people I liked? Yes of course and then feared loss through these actions.

A message of hope would to understand EA its mechanics and to get the best out of the person and who they want to be.

Paul Isaacs 2018