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Autism from the inside


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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

Exposure Anxiety Image 2018

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

 


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The Cognitive Aspects of Autism

Note This Is From a Personal Perspective

Image result for Donna Williams autism

I used to think I was stupid and there are many things which are a struggle. It’s hard for me to tell a garlic crusher from a can opener. I sometimes can’t visually recognise my own husband. I lose the meaning of things I’m not physically using so cooking and running water can be a problem. There is often no left or right in my world and up and down sometimes tumble too. I use objects to track my thought externally or have to type it out to experience it after it hits the screen. I often can’t tell if I like something, whether I’m hungry or whether I had a good day. But I can do so many things that people really struggle to understand how extremely uneven abilities can occur in the one person. But in fact, that is the cognitive definition of autism.

Donna Williams 2009

Cognition vs. Expression

I don’t know on a conscious level what I am always doing, thinking or feeling which means in responses that on the surface seem very “limited” or “surface” an action creates a response but not always a “connected” one.

I can however type long reams of introspective and emotional material on a unconscious level which seems paradoxically detached from what I can say verbally at times. My inner world is far more richer than at times what I can get out verbally. This lends to personality types which are more attunded to empathy I show this through art and poetry.

“Sensing” vs. Intellectual Procesing

I can see that this is to do with the residual aspects of being meaing deaf, context and meaning blind, information processing delays and langauge processing issues. I have found over the years “pathways” of extraction such as art and poetic writings. I “be” and the puzzle seems to all come together with an “unknown knonwingness” that I cannot do when I am in a more concious state as contrdicatry as it sounds one gets less out of me.

Paul Isaacs 2018


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Tinted Lenses, Visual Perceptual Disorders and Bridging The Gap Between “Non-Visual and Visual Worlds”

Note – This is from a personal perspective

Visual Agnosia Image 2017 

VISUAL PERCEPTION & AUTISM 

Some people on the autism spectrum have problems with filtering visual information which in turn distorts perception and what one is seeing, interpretation what someone takes out of what is being seen in terms of context and association and mentalisation that ability to internalise and integrate the visual memory in the form of a coherent, connected and retrievable memory.

WHAT TINTS CAN BE USED FOR?

If people live in a world of being object blind and meaning blind and ultimately context blind this can have an impact on socialising, bounding, learning and having the ability to retrieve multiple forms of incoming visual information at once. Tints work for people in different ways (if they are needed at all) – for some its sensory integration disorder, for some it is a level of dyspraxia, information overload and coordination, for some it is building up a visual context because of simultagnosia and/or semantic agnosia, for some its processing faces, for some its recognising and building upon and reading social cues, for some it is getting a sense of “self and other”, for some it is visual learning difficulties such as dyslexia, dyscalculia and being able to read and write with coherence, for some its aphasia and/or verbal agnosia and gaining a better grasp of language.

Donna Williams 2011

PERSONAL PERSPECTIVES 

70% of incoming information is visual and we take that information in as light waves – essentially as color. Tinted lenses are filters. They filter out different light waves. This reduces the level of incoming information which leaves a person more processing time. This can have different effects in different people. For some it may just help them relax more or feel more comfortable looking at faces or making eye contact, help them handle places with bright lights or being outside. For some it will allow them to read comfortably and with meaning or improve depth perception. For others it may help them better process language and ultimately speak more fluently. For some it may help them see things as a whole and recognise objects, faces, places, and begin to read context and social cues or have a better processing of a simultaneous sense of self and other.

Donna Williams 

Tinted lenses have helped me glue together a world which was largely bits and pieces that seemed shattered and unendurable, people shatter into fragments, objects floating with no clear base, foreground and background interchangeable, familiar voices with no face that seemed to match the warmth of familiarity. My language was also impacted to a certain degree with no internalisation of the visuals around me. Now I have tints they have made able to see faces with a level of coherence, looking at faces now I see a “whole” rather than “pieces” I am able to focus on their movements, body language and words, I can walk down the street and look at faces, places and people with a level with a level of coherence, I am able to better gauge “self and other” in conversations. I still have visual perceptual disorders however the tints have opened up and bridged my “non-visual to visual” world greatly.

Paul Isaacs 

Paul Isaacs 2017


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Book Review How to Best Help an Autism Mum By Sharon King

Image result for Sharon King How best

BOOK REVIEW

Sharon brings to the life a world in which people need to know about and the confines of subjection opened up deeper and emotion as a well placed flower, gathering water and sun in equal measure. Sometimes people do not realise the awareness and complexity of the flower and sundered people look back tracking the enlightenment and darkness as forms of reflectivity and an eternal promise of and finding of happiness and stability. Through expereince one does grow and Sharon presents her own beautiful journey of grownth to the eager reader.

Sharon conveys deep emotional introspection and wit in equal measure and she takes us on a journey that is like dark chocolate mixed with sugar bitter sweet and to her own admission it is so as she explains that with glorious and saddening anecdotes, personal examples and gentle direction to aid, advise not only the autism mum but the friends and family around her.

She talks of her feelings of her three children being all diagnosed on the autism spectrum, her husband, family and friends with a whole family dynamic in tow opening up a social context to which autism should and has to be put in. How else would one learn of differing forests and pastures not trod? Unless the delving experience hasn’t been shared to others? Sharon’s wit, desire, vitality, vulnerability, realism and clear devotion to her family burst forth from page to page.

I highly recommend this book to people on the spectrum parents, siblings and professional to let lose parental, practical, emotional and empowering grasp on the realities that are faced.

Paul Isaacs 2017