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Autism from the inside


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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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Militancy & Autistic “Culture”- The Dangerous 10 Degrees Of Separation Between People With Autism & People Who Aren’t


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“Autistic Militancy” Created Words & Created Perceptions 

Autism and Militancy The word “Neurotypical” has created a lot of problems in terms of its projection and use over the years. The implication and the “reverse” bigotry that flows with venom towards people who are “not like us” (people who are not on the spectrum) not only burns bridges but causes emotional unrest, invalidation and social-emotional friction that otherwise should not be there. The whole aspect of autism being a “culture” should not give people cart blanche or the freedom to treat others in way which could be deemed predatory, hypocritical and character destroying.

Looking at both camps in moderate and objective way offers a exception of one’s reality and openness to share differing realities, the trails, tribulations, the ups and downs etc.

* Then there’s Moderates (like me, my husband Chris and those on the spectrum and beyond who hang with us).   I have gut, immune, metabolic disorders, a mood, anxiety and compulsive disorders, visual and verbal agnosias, dyslexia and I’m challenged in the info processing and learning departments BUT I’m a master of adapation and I don’t go for cure but I do believe in treatment and management for severely disabling or limited health or sensory perceptual disorders.  So with me ‘normality’ is relative.  You can use the word ‘disability’ and I don’t think it defines all I am.  But I’m more comfortable with ‘disAbility’ and ‘disAbled’ which emphasised that I have many abilities as well as, sometimes because of my disabilities.  I also use ‘diffabilities’, ‘differently abled’ and prefer to use the term ‘challenges’ rather than ‘disabilities’.  When refering to those not on the autism spectrum I avoid calling them NT (I hate that reductionism).   I use the term diversity-friendly as encompassing ALL diversity, not just those with labels (ie gay, deaf etc).  Moderates on the spectrum are content to refer to themselves as ‘on the autism spectrum’ (happy to see ALL humans as having some elements of autism at least at some time) without seeing this as a ‘sell out’.  They tend to see their autism as part of, intertwined with but not the whole of their selfhood.   I use words like ‘support’ rather than ‘help’ (because support is egalitarian not paternalistic).  Militant Culturalists often see moderates as undecided, weak or selling out in the battle to advocate and educate about autism.

Donna Williams

“Culture” vs Objectivity and Realism – Why I dislike the word “NT”

Looking at what “reverse prejudice” is it is no better than what any other prejudice is reducing people to a stereotypical label and all the assumptions that go with it. Why should people off the spectrum be reduced firstly to one word and secondly that they are going to act in a certain predicable way? Also why should that be accepted a projection of hate, dislike is still a projection of hate. There is good and bad in all human beings regardless that is why I do not use the word NT nor do I see autism as a definer of someone’s overall character.

I recently did a tour through which I met some wonderfully kind, enlightened organisers and many carers and professionals who had, humbly, come to learn about alternative realities.

I met some autie spectrum people dotted about the audience, sharing rows with non-autie parents and others and many came up and met me.

At one of my lectures, though, I met some autie spectrum Aspies who came in as a group and sat, almost huddled together, away from all non-auties.

At the end of my lecture I asked ‘did you enjoy the talk’.

The leader of their group replied in a tone lacking in warmth, ‘it would have been better without any NTs present‘. The others chimed in in support of him. Alienated, I left them to it.

Later when they were buddying up with more of the same separatist rhetoric and there was a tone to it that sat uncomfortably with me, a tone I’d heard before, in hierarchical non-autie children in playgrounds once upon a time (where I’d also known nice ones).

I had to let this group know that I simply don’t do bigotry… that my non-autie friends are not typical, mundane, boring or expendable and that I refuse to use any derogatory term that hints they are such, such as ‘NT‘.

As you can imagine, they were quite taken aback. I was meant to ‘understand’. I was meant to be ‘one of them’. But if ‘one of them’ meant I was meant to hang out in a group and dislike or disrespect another group, and share this as ‘belonging’ and ‘shared culture’ and ‘shared understanding’ then this wasn’t ‘me’.

Donna Williams 

Autism has a culture that has been “created” but what people need to be aware of that the the word autism is an adjective a describer of an experience so it doesn’t define one’s own personhood nor humanity. People on the autism spectrum have personality types like ALL other people the main difference is the different types of blockages in expression and modulation. Here is a breakdown of those domains in basic terms –

  • Social Emotional Alexithymia  – The inability to recognise bodily sensation in terms of emotional frequency and trajectory
  • Social Emotional Self and Other Processing – The inability to keep “on track” in filtering one’s own thoughts and perceptions with of another and vice versa
  • Visual Perception I Simultagnosia – The inability to “see” things in the context of their relation to anything else only taking in parts of an image not “wholes”
  • Visual Perception II Semantic Agnosia – The inability to “see” with visual and/or associative meaning
  • Visual Perception III Prosopagnosia – The inability to recognise people by their faces
  • Language Processing Aphasia/Verbal Agnosia  – The level and frequency of word finding capabilities
  • Body Disconnection Oral/Full Body Apraxia – The inability to construct words, sentences in terms of formation

Egalitarianism We Are All Human Beings

If you strip away the passe destructiveness of autism stereotypes, militancy, the group think, separatism, egotism, narcissism and open the door for all realities to be explored by different people, perspectives and realities it would be much healthier and less hostile place. The only “club” I feel apart of is the “human being club” it has a lot of members about 7 billion in total I like it there. Everyone is equal and if realities and opinions are going to be heard/shared there should be a sensible and objective arena for them to be explored.

Paul Isaacs 2017

 

 


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The System Of “Sensing” – My Friend The Colour Red

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Note this is from a personal perspective 

My Friend The Colour Red

I see you without knowing

You are shown with no wanting need

My evoked body halted and time is stood still

Static and moveless body with a kaleidoscopic brain

My dizzying heights stupor the as my eyes grow wider

A peeking smile peeped across the face of the moment

What stickly feeling that evoked with the a swirling eternal colour

The System of Sensing 1998 2007

Paul Isaacs 2017


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What is Achievement?

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Do you judge achievement by the vastness of comparisons or by the person cantered nature of what has been achieved? I have not married nor have I the desired to have children. I ask how is my life welling up with fullness and ethereal walkings amongst the populous of humanity? Because I am comfortable in the roads, paths and darkly forests that tread beneath my feet. I think “achievement” is not what, if or how it’s the reason and honest virtues behind them that make them special and worthy.

Paul Isaacs 2017


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“Doing” vs. “Being”

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“Doing” in its extreme form can consist of over-thinking, over worrying, over-analysing losing grounded functioning and not being pre-occupied with too many things at once denying at times what is right in front of you tentative steps to be taken in the overburdens mind that consist of unwanted thoughts that sometimes never let on to being silenced. I am sure that that wanting to be a “be-er” may consist of flattening thoughts.

“Being” in its extreme form can be pre-occupied with the moment feelings of floating, connection to the situation with yourself, having an inner world to eagerly retreat to that consists of many colours, patterns, shapes and shine being jolted into to “doing” and conscious thought may well be difficult but can be achieved.

None of these things are distraction or detraction of cognitive skills although quirky and paradox like presentations may resume.

Paul Isaacs 2017