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Autism from the inside


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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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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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“Autism” Is Not A Single Thing – So Why Is It Still Being Presented As That?

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Different Presentations

No one “owns” Autism that includes me, you the person next door- I think it is important to know what “autism” and “asperger’s” in terms of profiles are the presentations that come with them.

Possibilities And Openness

What are the components? (information processing, environment, mental health, personality, identity, learning types) By looking at these pieces you can understand what to do (or not to do) there are many different paths so by being open to possibilities.

Going Against The Grain

I know my views aren’t popular for one because they go against the status quo of “neurodiversity” that is fine.

Looking Beyond The Rhetoric

Has anybody wondered what autism really is? Has anybody can beyond the passe rhetorics, memes or generalised views to know how to understand it? To empower people with autism, their parents and professionals etc?

Looking Deeper Means Looking AT What Is There

Isn’t it time to know what makes up a person on the autism spectrum? Dig deeper? I can tell you this is what my autism is made up of –

  • brain injury
  • hemiplegia
  • developmental delay
  • speech and language delay
  • language disorders
  • tic disorders
  • mutism
  • related anxiety disorders
  • personality disorders
  • learning difficulties etc.

This took six years of research and self-reflection to get to this point.

I say to people reading this do not remember me for saying but remember the template that is being presented and what you can relate to and do not relate to

Let’s Think About It

For a so called “accepting autism community” I have seen plenty of internal upset, bullying, gas-lighting, trolling, arguing, tears and upset to last a life time. Autism has created a “culture” around itself and personally I have seen nothing healthy come out of it. I came into this in 2010 with my parents we quickly got out of it my parents still don’t “get it” the militancy by people on and off the autism spectrum and I have recently been reminded of why I stay clear of it.

The people and parents who seen themselves as human beings first (not defining by their “autism”), who are living their lives not consumed by labels and redundant definitions are the ones who are great examples.

This isn’t a game and when you are toying with people’s feelings directed at people who dare to above the parapet a speak from the heart and not tow the line Is this fair? I am all for healthy disagreement lets start listening.

Paul Isaacs 2016


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Autism & Visual Perceptional Disorders – Radio Interview “Reinventing The Illusion Of Vision” with Lawrence Bull

Overview

Last week I had the please of being interviewed by Lawrence Bull and radio presenter in  Australia of Think Digital Futures: Stories Of The Digital Age.

In this interview I cover from a personal perspective –

    • My developmental trajectory
    • My experiences of language development
    • My experiences of visual perceptual disorders
    • My experiences of not being a visual thinker
    • My experiences of tinted lenses
    • My views on autism and autism politics

Paul Isaacs 2016

 

 


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When A Puppet Is On A String It’s Time To Cut It

Three Faces“Autism” has politics too

“Autism” I have wrote many blogs about the the differing presentations, the fact that it is isn’t one thing a  singular syndrome that features the same static 2 dimensional traits that is certainly what it is not.

Confusion because of the “status quo?”

When stereotypes emerge people can feel that their voices, perspectives and realities may well be a bone of contention for the “status quo” model.

Having that readily supplied to them they may be confused, bewildered, angry, upset, saddened that that what they are hearing doesn’t relate to them, their child, friend or family member because the “status quo” supplies them with “the model”, “the framework”, “the thing” that autism is (of course it isn’t but the is the supply).

What is “in” today will be “out” tomorrow

If you have felt any of these theses things I bring a hopeful and proactive realisation let it go, let it go of the stereotypes, let it go of the the generic models around autism, let it go of the popular fads – go with what is right, what is true and what what is really for you.

Paul Isaacs 2016


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Take A Break From “Autie-Land” & Regain Perspective of “You” & “Other”

SDC10045I have had a month off from the “autie-land” and I can say it has helped me very much with with perspective, with mindfulness, with balance and neutrality – the old saying about “I have found myself again” is something to strive for at least in me eyes. Being balanced means you can cope, adapt and manage things better in your life that means in essence you can be a more “functional person” this helps with both positive and negative things that happens in ones life this to me is very important in not only finding oneself but also connecting with others.

I have a strong belief that if one is on the “stage” one is not the centre of but one is “apart of” this that means everyone in principle is on a equal playing field even if at times it doesn’t feel like it (media, magazines, TV shows etc). However lets strive and make it a reality anyway. I have laughed more, procrastinated less, created more (drawings and poetry), walked more, enjoyed the company of good friends and people – I think that is telling me something right there. So if you are around people who are selfish, hollow, fake, lack empathy, are controlling and so forth how many chances do they need?

How many minutes, hours and years does one waste on this? This is something I have learned and lived in just over month when one is is balanced you “see more” as I have said I am person first and if we see people as “people” rather than “objects”, “things” and “labels” then maybe humanity would have a better chance of getting along. Strip the militancy and extremism out of it and have a better chance of ALL people being listened to.

Paul Isaacs 2015


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What I Have Observed In The Autism World – It Needs To Change

The Beginning 

Author ImageI was diagnosed with Autism in 2010 at the age of 24 years old that same year I started a new career venture as a public speaker and later a trainer and consultant. After the diagnosis as my parents and I were walking towards car my Mum gently directed and reaffirmed to me that I was person first and both she and my Dad had always seen me (and would continue to do so) as “Paul”.

Culture Shock – Part 1

In my own naivety I was unaware that autism had a pre-existing “culture” that was in place I was slowly being introduced to words that I wasn’t either comfortable with or didn’t understand their significance in the ways of the world. To me in 2011 is where these internalised struggles started people were in directly and later directly saying that autism defines every part of them, what they do how they think and feel. I wanted to know the mechanics of my autism to empower others that was all. I also was on   a quest for my sense of personhood that I valued and still do first and foremost.

Autism Isn’t “One Thing”

Over the many years as a speaker, trainer and consultant it is only fair that Autism should  not be seen as a mass of traits that  affect the people who are diagnosed in the same way but as clustering of pre- existing elements that create one’s own unique profile. In 2010 I was introduced to Donna Williams’ Fruit Salad model of Autism which has helped understand the mechanics of me but a clear and firm realisation that seeing myself as a person first isn’t a negative thing but a positive thing.

Culture Shock – Part 2

As an advocate on the Autism spectrum I feel I have a personal and professional responsibility to not project the tired stereotypes and that the only perspective I can speak from is my own. Sadly, what I have seen is a very negative side of this culture which includes “neurotypical” being used as reversed prejudiced attack – I dislike this word as it creates more barriers and in my view isn’t the correct word to use. I have witnessed “them” and “us” language, separatism, militancy, bullying, death threats and character assassinations.

This in the last two years has been a real concern for me regardless of if you are on the spectrum or not this is no excuse for such behaviours. We should all learn to respect each other’s views regardless of disagreement. Personally I don’t see Autism as culture but as a disability where  a culture has been built around it. It is a set of ideas.

Mental Health – A Personal Perspective 

Because of these issues and others this has taken a toll on my mental health I have seen to much and it has made me question a lot things over the last year or so. I lost myself through over investment and low self-esteem and self worth. This is partly because my views were not seen on par with the status quo and partly the way in which I was told either through silence or attacks, I know I am worth more.

Equalism

I worry about the people on the autism spectrum who are functionally non-verbal, those who have autism with a learning disability and  parents and guardians are not getting their voices, opinions and realities heard and acknowledged.

Everyone is equal so therefore realities are equal (even if in reality it doesn’t happen) so if that is the case then the whole spectrum should be included? Surely?

Personhood First? Why is this Important? 

I was born a person and I will not shackled into thinking  that every aspect of me is my autism – for the reasons stated above I am going to explore other ventures such as art, poetry, fashion and so forth.

I am still an advocate, I will present speeches, present training, write and blog but with a different mindset to the world which I was eagerly presented to. I shall not miss this aspect of it – it is damaging and misleading and in my opinion needs to change before others get treated the same way.

Beyond The Label (Pastures Green)

Ever the thoughtless fable to define someone by a label

To glamourise or demonise is the answer listen to your call

Can you really speak for all? A court Jestor or fool?

Beyond the label is before loving the person for themselves

Out of the confines you shed a smile. It has been a while?

I look at the rolling fields and trees, the splender of the grass

The waving flowers and the earth, watching the world pass

The plodding dog eager to please, always up for a tease

I have no regrets my body is fluid it doesn’t stall to freeze

I sup on tea and live in moment -I want to please.

 

Paul Isaacs 2015