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Autism from the inside


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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


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Wretches & Jabberers DVD – A Journey Into Autism

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A moving and delightful movie and about two men on the autism spectrum who are both “functionally non-verbal” finding their voices through facilitated and typed communication. Debunking the myths that people who cannot speak with their mouths are “retarded” or “intellectually disabled”.

Tracy and Larry are best of friends and their passion for advocacy leads them to meeting others around the globe who are also yearning and fondly sharing their experiences and voices with a wider audience, showing great empathy, compassion, introspection and deepness through the words that they write to a wider audience. Bringing people into their world and inviting others to think, reflect and reevaluate what “autism” and “intelligence” even look like.  Showing great feats of creativity.

There is warmth, humour, sadness and hope sometimes all at once when listening the candid words and hopefully the viewer will come out of this experience with greater level of acceptance and make less assumptions about what is going on on the “inside”. Please all presume competence.

I highly recommend this DVD.

Paul Isaacs 2017


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Autism As A Describer Not a Definer – Combating “Label Lust” and “Overidentification”

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I have been an autism and advocate for over seven years I have seen many autism “fruit salads” in my time some people with auto-immune problems, other with complex mental health issues, others who see their autism as a curse, others who see their autism as special and unique, others who identify as their whole being as “autistic” others who don’t. I have seen militancy and anger towards people who go against old rhetoric who propose realism as opposed to glamorisation, people should allowed to give their own perspective from different angles, perspectives and offering multiple realities. 

Differing Profiles

With all the the “pieces” I describe in my training sessions and/or presentations are “describing” words the reality for that person will differ from “piece to piece” however that “piece” will have its own name and describing it allows the people understand a fragment of it albeit from a personal and/or observational perspective. Its hard to get the balance right but it is worth it.

Definition vs Describing vs Identification 

It isn’t defining people by the labels offered which is from an educational, resource perspective and even a self-reflective perspective. It is offering a window of what could be going on. I am not the speaker for all (never have been) but I put the questions out there.

 

Human Beings First

If we (as human beings) all defined ourselves by a set of labels it would be rather reductive and in reality a real shame. At the end of my sessions I offer a reality that despite the differing levels of “pieces” and/or disability  they are not defined by  their condition, they are human beings first like everyone else.

Paul Isaacs 2017

 


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Autism and Asperger’s Different Trajectories and Different Presentations?

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Today I was doing autism training and in the team was lovely and inquisitive man with Asperger’s Syndrome as the session went on he shared some of his experiences from not picking up verbal cues, being literal and having sensory integration disorder as well as issues with emotional regulation and possible alexithymia.

It amazes me still that people think that “Autism” and “Asperger’s Syndrome” are still considered to some to be the “same thing” when is clear that even if on the surface some of the issues may be similar many of underlying components are very different. If I use both the gentlemen in question and myself as examples so here goes.

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  • The gentleman seemed to display a level of Social Emotional Agnosia which meant he struggles with non-verbal cues, tone of voice and facial expression he acknowledged that he use past experiences to build up a format of how to understand someone
  • He didn’t have Prosopagnosia (30% of people with social emotional agnosia do so)
  • He was literal in processing of verbal language and seemed to have less impaired visual-verbal processing
  • Possible Alexithymia which is “knowingness of your own emotional states”
  • Seemed to mentalise in a more logical, literal and pragmatic manner which suggests the use of the “left brain” person.

With Myself

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  • I have a mixture of Simultagnosia (Object Blindness) and Semantic Agnosia (Meaning Blindness) which means my visual field is fragmented, distorted and incoming visual information does not have any meaning, context or reasoning
  • I have Prosopagnosia (Faceblindness) as an extending of the already existing issues around visual perception meaning I “recognise people” primarily by patterns of movement and voice
  • I have a level of Receptive and Expressive Aphasia (Meaning Deafness) which even in its current residual form means I “lose” the ability to keep up with interpretive verbal information and struggle with visual-verbal processing
  • I have less literal, logical and pragmatic style of thinking or organised thoughts  I am very much a “right brain” person.

 

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I was asked what I thought the main different feature was between Autism and Asperger’s. I think you’ll maybe find in reading through the site on brain hemisphere specialisation that there are many Aspies who may be better at left brain stuff and many Auties who may be more right brain but not nearly recognised for the abilities they do have as much as they are recognised for the left-brain abilities they don’t have. Whilst most people have a balance of both abilities, being extremely one side or the other clearly means the abilities of that other side are far less practiced. Processing incoming information in a non-Autie manner usually involves using a good balance of the two. So feel free to try the test yourself.

Donna Williams

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Different Trajectories 

Maybe its is because I spent large part of my infanthood exploring through my senses and/or through patterning, theming and feeling struggling to get a sense of what “interpretive information” is and what it means? To be around such information and how to connect all the dots within in my mind. However I appreciated and acknowledged the validity of it in my previous blog post.

I flourish in areas of typing, writing poetry and creativity I love wordplay, sounds,  pitches and the seemingly infinite kaleidoscope colours, shapes, textures and shines they “talk to me” as much as next person.

Things Foundly Remembered

I saw your face with my hands

A voice a distant echo but foundly acknowledged

The smell of the wise tree in the garden the leaves did dance

A new place everywhere to be eagerly explored upwards and onwards

Flomping along the globblyness unstuck and unshackled my hands are free

Looking at the gloaming and silvering shape what plotunes and envelopes my soul

I thank you old friends you are me and I am likewise swashing around in the ink clouds

 

Paul Isaacs 2017