Paul Isaacs' Blog

Autism from the inside


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Autism “Culture”, The Word “NT” and Militancy

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If people are representing one has to think about is it for other people? Self-service? Advocacy? Empowerment? Information sharing? 

Militancy Is it “Normal”?

If militancy is perceived as the norm then who is that actuality helping? Assisting? Or otherwise is this the new phase that becomes relevant before it becomes redundant and passe?

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

If this is the case what example is being set? By noting ones perceived superiority or “specialism” over others is still bigotry, separatism and creates more waves of the old “them and us” which doesn’t represent inclusion, empowerment, reality-sharing or otherwise. Which burns bridges more bridges than it claims to build.

The Word “NT” It Isn’t Helpful

I have come to believe that the word “NT” is not only unhelpful  and has been projected in such a way that would imply that other people who fit this “label” are “typical” therefore one could perceive that word as “boring”. I find this not only hypocritical but also a mystery because in truth there is no such thing as a “neurotypical”.

Autism “Culturism and Militancy”

The English word militant is both an adjective and a noun, and is usually used to mean vigorously active, combative and aggressive, especially in support of a cause

One cannot cherry pick what autism is and isn’t as a shared collective that is same for everybody in the truth autism in its presentation and reality is different for each person so in order to advocate and empower you have to be aware that the only reality you can share is your own and be humble and conscious enough to say that. To allow other people’s realities to relevant you cannot speak for all, to empower you cannot project “reality sameness”  because no human being is the same.

No One Should Be Defined As One “Label”

Can anybody be defined by one factor? Can anybody describe themselves in one word? I do not define myself by my “autism” it is certainly apart me but it isn’t the driving factor at all. When I was born I was born a human being and all that comes with it I live as a human being. There is much to be said about in the end being emotionally grounded, considerate and realistic.

Egalitarianism – The Way Forward

Egalitarianism (from French égal, meaning ‘equal’) – or equalitarianism[1][2] – is a trend of thought that favors equality for all people.[3]Egalitarian doctrines maintain that all humans are equal in fundamental worth or social status,

My wish is that in order for this to work people must consider all realities, perspectives, opinions and input in a constructive manner that is overall beneficial.

Paul Isaacs 2017

 

 


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Sub-Clinical Autism & Having Pieces Of What Can Make Someone “Autistic”

SEEING “PIECES” IN OTHERS 

As odd as it may sound people can have “pieces” of what can someone on the autism spectrum. This year I want to an event in Cardiff and spoke towards the end of the speech I asked if people in the audience related so some of the issues around autism presented many put their hands up. These people weren’t on the autism spectrum but the could relate to the some of  “pieces” I had been describing.

DW Fruit Salad Model - most common

 

“SUB CLINICAL” ASPECTS & SPECIFIC ISSUES FOR THAT PERSON

This is because “autism” is made of pieces and these pieces differ from person to person that means that different “expressions” and “presentations” will be shown. So if people who are considered “sub-clinical” or as having “traits” what help is there for them?

The question I would say is what do you relate to? How does it present itself? What help is there for those people whose issues maybe considered not important but at the same time have a significant impact in certain areas of functioning.

With this increased awareness could mental health services and other professionals be able to help diagnose people with these issues?

MY AUTISM “FRUIT SALAD” 2016 

Paul Isaacs Autism Fruit Salad Part 1 2016Paul Isaacs Autism Fruit Salad Part 2 2016Paul Isaacs Autism Fruit Salad Part 3 2016Paul Isaacs Autism Fruit Salad Part 4 2016

WILL THE WORD AUTISM BE USED IN THE FUTURE? 

Each “piece” of my “autism” has its own reality and function some of them you may well be able to recognise others you may not.  By saying that “autism” is one thing  (and can then only be owned within that group) when people with acquired  brain injury, strokes, cerebral palsy, genetic syndromes can inter relate to these issues presented (and may well have or have not have autism in mix) it really begs the question will the term autism be used in the future?

I spoke to a neurologist some years ago who said in 20 to 30 years the word will not be used and instead the pieces of that person’s profile would be diagnosed instead this would certainly be progression for people with autism and also others who have “pieces” to.

Paul Isaacs 2016

 


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I am not a “Label” I am A Human Being First

Baby Pictures High ChairI don’t know about you but when I was born I was born a person, lets ditch the rhetorics and start listening to other peoples realities and opinions (regardless of were they come from) and accept that disagreement will come but everybody as their own things to say. Lets not be restricted by a “box” or the what is “in crowd” I thank the people who have said their realities with conviction, honesty, rawness and carrying on their lives as best they can be the example and don’t just claim it. I am not “autism” if doesn’t “define” my being it rides along life it not a “definition of my life”. I acknowledge those on  and off the spectrum who are honest about the realities lets start listening and going from there keep going even if you don’t do not feel listened to, no popular do not worry at the very least (or most you have been true you and have not be influenced by the dominant wave.) 

Fanciful fable a baby in a cradle
New life and new wonders able
A hand from “in crowd” does beckon
I walk in feel more lonely I reckon

I’m not those things you said “we” all are
I am not a part of a redundant single star
You say things as fact, straight lines so subjective
When all I want to be is “me” more reflective

A puppet on a string I cut them off and look around
The strings a still attached with words and the same sound
I got back to the “real world” so eagerly with open arms
It may not be perfect but honesty has its ethereal charms

I am part of the humanity no label defines me I shall deface
Of flesh and blood and gleefully I move from place to place
The words are rubbed away sounding through the sky
I now what I am from life to death a smile and a sigh

Paul Isaacs 2016


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

20160730_121048DIFFERENT 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 RHETORICS

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

LETS 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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Over Generalisations In Autism

20160730_114554When people think of autism? One may need to consider this that is has never been a singular thing. In my previous blogs I have mentioned people like Donna Williams and Manuel Casanova who in their own unique style content has indicated through different observations and experiences that autism is not a generic, unmovable or flat presentation and that the components are different between person to person. That in turn means that different sources of help, aid and empowerment would be needed. It is very individualised.

Generalisations? Too Easy To Digest?

Generalisations are easy to digest I suppose they create a bubble in which the person has these sets of “traits” and one goes from there,  to point out the massive differentiation in autism it is surely more than healthy and beneficial? Also leading  finding why and how the person in question could be helped and empowered.

The Issues Around Autism “Culture”

“Autism” is not a culture that (to me) doesn’t make sense at all fitting into one individual into   culture means surely you are treading into many further degrees of separation which for me is very uncomfortable to consider or even acknowledge as something I would want to do or pursue as a goal.

To over invest in a label  means you are seeing your self as a single thing  and one definable thing and not seeing that like all human beings ALL people have different interacting personality types, environments, experiences, thoughts and feelings.

Something I strive for seeing the validity of being rather than over defining. This relates very much to over generalisations of “us” and “we” do this and “us” and “we” don’t do that if you step back think about this scenario and ethos is that (as the bigger picture) over time helpful?

Conclusion

The “autism world” has many hidden voices and experiences that people need to hear acknowledge and affirm reality for them – I once wrote in a previous blog that it is about listening to ALL people’s views whether they are parent, professional, person on spectrum or person off the spectrum.

Breaking down barriers of generalisations will lead to hopefully an fuller open dialogue in which we CAN learn and acknowledge from others with out man-made barriers which have been created in the “autism world.”

Paul Isaacs 2016

 


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Not All People With Autism Are Logical Or Literal In Thought Or Presentation

20160730_102005 (2)Note This is from a personal perspective 

What Autism IS and ISN’T

Looking at the broaden the aspects of presentation in autism it is about understanding what autism is and just as importantly what it isn’t.

It isn’t is a generic stacking of black and white linear symptoms that present in every person in the same way, what it is is a stacking of conditions that are specific and personal to the individual.

The Hidden Strands Of Information

I can of course be logical that is natural human variant of thought and has nothing to do with autism (and also various personality types will overlap with overall presentation), however  I struggle with intense over a analytical  logical decoding of a situation as it is happening that leaves many things up in the air for me.

Such as emotional perception, (not knowing my bodies own reactions to the the incoming information) receptive and expressive language (word formation, extraction, relevance, understanding), lack of visual association (no pictures for words), information processing delays (incoming information not being “sorted” quickly enough to be “understood”).

Taking Things To Heart? 

As a child more prominently and now as adult the residual issues are still there such as not seeing the significance of what is being said this is before the literal. 

That means I am less likely to take things on a personal level even if I am being spoken too in a personal way.

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.

© Donna Williams

Introspection & External Mentalisation

I use my senses and introspection to “decode” things and sort them out from there, I don’t have pictures in my head sorting things out I have to do the reverse I have to get everything out FIRST by doing, gesture, tone, inference, movement and then go from there.

I struggle to mentalise plans so I just “do” this means that on a unconscious level I sort things out with no conscious thought at the time. When I wrote my first book I just typed and typed and typed with the basic premise being it is a book about my life.

However I am sure there are people in the world who are not on the autism spectrum who can relate this. I have of course  “non-autistic” moments of clarity for me just as there will be “autistic” moments for people off the spectrum.

Paul Isaacs 2016


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Abuse, Identity & Not Being an “Object”

Paul and Dad 2005 2A Dark Secret 

I can remember flashbacks, the terror, the feeling of being small,  worthless, subjected and cold this happened not that long ago as the thousand yard stare raised its ugly head from the fold. The realisation that something happened to me in my past which was buried under years of dissociation and memory based fragmentation a memory of an event at the heart strung up by a mass of tangled spider’s webs it truly was the widow of the web at its heart, her dark secret and revelation

Face To Face With The Reality Of The Past

A sad realisation of one incident which was sexual abuse is not an easy task to talk about in any forum I was 16 years old when it happened, but if it can help one person then in many ways my job is done. I decided to deal with this one alone to me I needed no therapy or endless talks about the what’s and the why’s etc, I went to the source it is near to me so I took that step on to hallowed ground with memories ripe or which I could remember soundly. This was a cleansing  exercise and I was going to sweat this one out.

Looking Forward

Like some sort of scene in a movie I was there alone. I found the place I patterned it out and looked, simple just looked at the door that is all I needed to do I stood there for a few minutes nor more no less and made my peace with the past I had to because I knew if I didn’t this would eat me up inside.

Many A Road To “Rome”

Has this on a subconscious level had an effect on my personality? behaviour patterns, triggers and is apart of the package of my “fruit salad” I would say yes it has may I would have been a less vigilant person, a less closed person in some areas of my life. I have learnt that I will not let this mould me but I shall mould it and if that is the road to tranquillity I shall take it. I am no one’s victim.

I Am Person 

Some people may think because of the nature of the work I do that I am detached, not accustomed to feeling out control, feel sadness, anger, confusion or despair I have got news for you. I am a person – when you cut me I shall bleed.

I don’t mind disagreement, I don’t mind people coming into my life and out again (if they wish), I don’t mind people  deciding to not to be my my friend (they have their own path to lead), I don’t mind disagreement, I don’t mind anger or venom spilled in my direction, I don’t mind a lot of things believe it or not. Just as long as with me you know that any judgement is NOT made prior to knowing because that is when one fills up bullshit loaded with assumptions and preconceptions.

I wish you well in your ongoing journeys. I would rather pave a road full of positivism and compassion than a road full of gold and greed. 🙂

Paul Isaacs 2016