Paul Isaacs' Blog

Autism from the inside


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Autism, Musings of a Faceblind and Object Blind Child

As I child the lack of visual and facial coherence meant that the visual world didn’t pry for the bonding and connective meanings that relied of multiple visual stimulus’, faces meant nothing and visual association was hollow, flat and soulless so I didn’t apply the connections of “me”, you” and “I”.

My first friend was “water” not the interpretive word but the emotional recoil that I gathered and like a friend it was there to give and take. I would see the puddles, flush the toilets and knew from them what would come. A timely wave of energy which was a akin to expectation as the water flowed the twinkles of spray in the surrounding area and the light shards bouncing off the sun in the morning.

“Bear” was used as a transitional object he was large, course and scratchy and would sit next to me in the car when my parents went out and about.

The Mirror in the bathroom and other places was a constant source of fascination it took me until 16 to released that “him” was “me” but I found it a comfort not to be alone.

On a pre-conscious level I was “sensing” and “tuning in” to an apart of myself which I wasn’t able to make the connection with in real time so it was slow process from infancy to mid-teenage hood. Having a level of aphasia, visual-verbal agnosias delayed the process but I am thankful to have given myself a “project” to work on and to bridge the gap between my world, the world and other peoples worlds.

This was a feeback loop in which I was finding other through self and self through other (the sense that the person in the mirror was “other”) this brought upon the slow bridging between my internal world of sensing to a level of intereptation.

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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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

 


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Autism & Personality Types – They Do Exist

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Personality Types & Autism 

When we look at “autism” looking at personality types is just as important as any other factors. We could look at these aspects of a human being they are very much the “soul” of the person they pepper one’s temperament, personal outlook, emotional regulation, friendships, relationships and aspects of social and emotional interaction.

Identity Crisis

For people who are on the autism spectrum not all their “being” is dictated by the diagnosis that they have. This of course will vary from person to person depending on what part of their “fruit salad” are impacting and how they view their personhood within that. Is it hidden by language processing disorder? Is it being tempered and challenged by health issues? Or are there underlying mental health issues that are being called “the autism” when they are not?

Autism Isn’t a “Collective” 

Some people see their autism as “ego-syntonic” that is all their person and they feel it all of the time, others like myself see their autism as part of their “being” this means that other factors come into it such as environmental factors, mental health, identity and learning style all human being are made of up these things . For me it seems to over simplified and reductive to suggest that people on the spectrum share common goals, values and outlooks as a collective experience.

The “Sameness” Machine

“We” do not all come from the same place, we do not have a carbon copy autism “fruit salad” that is  shared from person to person. That means that one should be seen as an individual not just a sausage machine of traits. People are born with no labels what so ever and no one person is defined by “one word”.

Paul Isaacs 2018

 

 


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The Journey To Functional Language

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Note this is from a personal percpetive

There is a percentage of people on the autism spectrum who overcome a level of severe language processing disorder. I have been diagnosed with autism in 2010 at the age of 24. My trajectory was a wobbly one part of my autism was brain damage at birth (left hemisphere) which meant receptive and expressive language was impaired this was a RECEPTIVE & EXRPRESSIVE APHASIA, I was sleepy baby and my Mum notices differences at about 6 months old. My language impaction was a mixture of neurological and in early infancy environmental.

I had speech and language DELAYS as part of my language journey this included missing MILESTONES, and then I had TRAUMA which was do with having adenoidectomy and circumcision. I had ORAL APRAXIA which meant that words at times expressively where a jumbled mess. I was echolalic, echopraxia and echomimic TV shows; VHS you name was stored phrases, movements and sequences. I had roughly between 80- 90% meaning deafness up till the age of 7/8 years old. When a level of functional speech which “my own” it felt stilted, “alien” and non-fluent and garnered from my perspective a lot of unwanted attention so I went into bouts of SELECTIVE MUTISM through my late infancy. Visual perception had an impact of PICTURE/WORD association meaning I was largely kinaesthetic due to by object and meaning blind – SIMULTAGNOSIA and SEMANTIC AGNOSIA.

Now as an adult I would say I am residual being about 30-40 % meaning deaf, tinted lenses have helped my make simple but dramatic visual associative contexts although I still struggle to know the difference between a toaster and a bread bin! 😉 I someone speaks to quickly, background noise, doesn’t use gesture and/or objects of reference I may well pick up the words but not glue the “meaning” to them.

I have functional speech but it can still tumble and become laboured due to fatigue and residual aspects of ORAL APRAXIA and my social emotional world is tapped into INTROSPECTIVELY through art and poetry. I still live in a system of SENSING the unknown “KNOWNINGNESS” which means that I perceive far more than I know until it is “out there” on paper form then feed it back to myself and understand what is going on! My mind is like confetti but I have overcome many obstacles due to autism, developmental delay, language processing and visual perception.

Paul Isaacs 2018


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In Conversation With Sharon King – Autism Speaker, Author, Advocate & Mum

I first met the Kings in 2016 this was somewhat of an interesting meeting of minds, I was nervous it was my first speech/training session as a freelance speaker and it was in Telford at a National Autsitic Society Event. Her daugther Rosie diagnosed with Asperger’s Sydnrome was introducing the speakers in the main hall. I had seen Sharon and her family over the years on social media.

She was in the audience during one of my sessons and we sat down during one of the intervals to chat with her daughter Rosie. They were both very warm, friendly and welcoming I then went to their home the same year to do consultancy sessions with her son and daughter Lenny who was diagnosed with classic autism and Daisy who was diagnosed with Kabuki Syndrome.

It was a pleasure to meet them all including Sharon’s husband Richard who with their charming and down to earth manner it was had left me with a positive and reflective on impression and we have became all beomce friends. Sharon has since of 2017 publised a book “How To Best Help An Autism Mum.”

Sharon’s Ethos

What would you like staff to know about people with autism?

That each person with autism is an individual. Anyone who believes themselves to be an autism expert needs to get humble and go back to learning. The greatest barrier to learning is the assumption that we know everything.

What support benefited you the most as a Mum?

The greatest support has come from my children and othet individuals with autism who I have befriended. An arena of respect is where the best parenting happens. X

Further Conversation

Sharon King

I think. One of the most helpful things I have learned is not to take Daisy and Lenny’s behaviours personally. It is quite freeing. Ie ~ ‘this is happening, how can I deal with it?’ As opposed to ‘this is happening to me…poor me!’

Paul Isaacs

Yes I agree ever take things on the personal because it largely isn’t even the swearing and being bitten doesn’t bother once you know where it comes from.

Sharon King

Yeh like rubbing crap (with regards to smearing) into radiator nor personal ~ just a bit smelly! X

Paul Isaacs

Haha Humour is an ally! I used to urinate in the bath in my infancy I liked how the colour changed in the water I also got confused and would treat my bath as a “very large toilet” it looked like a duck, sounded like a duck so I thought it was a duck no? That is context blindness

Sharon King

At least you admit to it lots of ppl do it in secret! X

Paul Isaacs

Haha 🙂 The sods 😀This conversation proves that open-mindness is the key
open doors rather than closed.
Of course poo smearing can have different motivations for some it could exposure anxiety and keeping “people at bay“.
For others it could be to do with severe sensory perceptual and/or language processing difficulties.
For some it could be to do with addiction, habitual and compulsive in nature.
For others it could be to do with co-dependency.
One “behaviour” can have multiple reasons why. 😉

 

Sharon King

I think with Lenny it stems from a genuine interest and delight in textures x

Paul Isaacs

Sensory perception yes 😊

Its been a very interesting chat as always Sharon as there certainly is a positive an objective theme going on here with your permission could I use your answers on a blog? This then can be put on your page. 🙂

Copied with kind permession of Sharon King

Paul Isaacs 2018