Paul Isaacs' Blog

Autism from the inside


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Polly – A Life Beyond Labels

Donna Williams (Polly Samuel) was a remarkable, empathic and humble person that I have had the fortune to know, diagnosed with childhood psychosis in 1965 at age 2, a victim of poverty, trauma, physical and sexual abuse in her infancy and adulthood.

She lived with visual perceptual disorders, verbal agnosias, body agnosias, auto-immune challenges, elhers danlos syndrome and dissociative identity disorder.

In later life she was diagnosed with breast cancer and sadly passed away in 2017.

Her work has helped, aided and empowered many people over the years of her conferences, lectures and books both autobiographical and informational in content throughout the early days of autism advocacy.

Polly was highly intuitive, person centred and accommodating to people’s needs refusing to adhere to the “identity” politics (seeing autism as the centre of selfhood which respectfully isn’t) and the lack of objectivity within the extreme narratives, she challenged the use of the word “neurotypical” its use and the inaccuracies around the word and its inaccurate meaning.

Other work included the use of tinted lenses and how they aided with processing incoming information, visual perception, faceblindness, simultagnosia and semantic agnosia, language processing in which a person is meaning deaf and not literal, advocating for people whom are functionally non-verbal who use assisted communication, advocating for people who had exposure anxiety who find the directly confrontational world oppressive and challenging, advocating for people with dietary disabilities, metabolic, gut and immune disorders.

I first met Polly at an event in Headington (near the city of Oxford) in 2009 with my Father during the interval, I went up to her to ask how she created her artwork she then said after saying I am potentially on the autism spectrum she said “oh yes you are really sensitive and so is your Father.”

We connected on social media and she helped me greatly with understanding my autism profile, the politics of autism and helping me through challenging times when I felt no one was listening to be me.

Polly encouraged me to not fall into the trap of seeing “autism as everything about you” and warned me about the militancy and backlash I would get for not towing the line in the confirmation bias narratives.

Over the past five years since her passing I have tried my best to inform people of her “autism fruit salad analogy” in which you look at the different pieces specifically to the person and thus see the person first – merging the medical/social model of disability to create the empowerment model.

She had an infectious laugh and a zest for life and humanity and that is what I value from her is that she saw me (as others) as not simply “autistic” but human beings in their own right.

I loved her artwork and poetry it always seemed to speak a thousand words.

I miss you Polly I think I always will. x

Paul Isaacs 2022


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Militancy – Is That The Sad Way Forward For Neurodiversity?

Daemos & Idolos

I take the middle ground on because some of this is down to personal and/or professional preferences.

Autism politics is a great divider on the autism community.

I am neither a culturist nor a curist because they are two extremes which lack reflection and objectivity.

Getting Balance Between Two Polarising Extremes

They share one aspect they refuse to people on the spectrum as people one side “diseased” the other “sexy” (for very different reasons as people). This is truly saddening for me. Demonisation & idolisation at its most potent.

Autism & Selfhood

When I say person with autism I do not mean a literal appendage what I mean from an ethical point of view before labels (adjectives) are given to people we are born as human beings.

The next aspect is I see autism as apart of me because I am neither proud nor ashamed, here nor there it just “is” that is a personal standpoint and a choice.

It also means I am a human being no more, no less and living a human life. Surely that is the greatest gift?

Taking The Middle Path

Many roads.and different journeys I feel the first aspect of self acceptance is understanding you are a person and that is fine.


With regards to not being accepted I value it (it wouldn’t have been any different in my situation if I would have had a diagnosis or not) because the people who did had their own challenges, be it mental health, core beliefs, projection or otherwise we are all fallible.


So I thank them for it and the frameworks it has given and wish them well in their lives.
With regards to the autism community it’s just like any other it has its systems, politics, varying viewpoints, discord and harmony and I value people on their views of personhood regardless.


The premise of belonging is you first it starts with the interior and working on and unpicking perception of self and reality of connected self.


In other words be your own best friend first because it’s the flesh cage you reside in and you might as well make comfortable.


I am naturally solitary, idiosyncratic, self sacrificing and mercurial these are part of my patchwork quilt. I am asocial, asexual ,value friendship and a keen observer of folk.


Faceblindness and visual agnosias made me connect with that world kinesthetically, language processing (aphasias) made feel words beyond/before their interpretation, living in system of sensing makes me feel too much, alexithymia can make me feel like inner emotions are to be explored and hemiplegia makes my world halved and wobbly.


I was diagnosed 12 years ago at age 24. I was a functionally non-verbal child who presented as deaf and blind, echlolalic, meaning deaf, meaning blind and oral apraxia. I was grateful for my parents for seeing “Paul”.

I had a great mentor Donna Williams (Polly) whom helped me understand the guts of.my “autism fruit salad”.


We are all on a journey from birth to death and I respect your candid honesty in your work, moved by your treatment as a child and your passion for change that I agree with.
Sometimes people have different ideas of what neurodiversity means.

Paul Isaacs 2022

Autism, Disability & Looking Further

Expanding on this further “all” human beings are patchwork quilts made of different elements – environment, mental health, identity and learning styles.

Personality types are within all people up to 4 to 6 this means in to context of autism that there is more fundamentals going on.

Parts That Cause Distress? Parts That Don’t

Also there are parts of people’s autism “fruit salads” which do cause distress (ego-dystonic responses to information processing challenges) so that has to be looked into as much as the parts that don’t.

Egalitarian means the principal of equality for all, if voices and perspectives are being willing or unwillingly silenced then that isn’t really diversity.

Political Bias, Informed Choices & Realities

Autism is not a “culture”, “identity” or “community” inherently. That aspect has been created rightly or wrongly.

This why I am an moderate I do see people as such people.

Maybe that is were true neurodiversity resides?

Paul Isaacs 2022


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Anna’s guest this week on ‘All things Autism’ was our charity Ambassador Paul Isaacs

Anna Kennedy’s guest this week on Women’s Radio Station was Paul Isaacs.
‘All things Autism” will be aired at 1pm and 1am every day this week.  Please see www.womensradiostation.com

Paul shared: My name is Paul Isaacs and I have been an autism advocate for over 10 years, in that time I have seen many changes – some positive and accommodating others separatist and polarising.

Birth & Early Development

I was born in May 1986 and I was a month premature.

By my Mother’s observations I was quite and happy baby, however after the first six months onwards she began to notice differences in my development.

The initial worry was that I was deaf and/or blind this was round 1987, my motor coordination was delayed, I had oral apraxia for a time and didn’t gain functional speech between the ages 7/8 years old in 1994. Due to being meaning deaf and meaning blind.

Mainstream Education & Employment

I went through mainstream education from the 1989 to 2002 despite having obvious challenges.

The social and environmental factors were acute if not initially passive by people in their presentation, comments, body language and judgement.

It was subversive from the adults within my village and more pronounced and opaque towards me from 1991 onwards at age of five, this then transferred into my educational experiences and larger part of my employment history.

What I Reflected Upon

What I have learned from these experiences is lack of knowledge creates judgement, bigotry and separation, but what causes this?

The Mechanics of Bigotry?

I think it is due to one’s environment, personality factors (although not entirely indicative), core beliefs (what is considered “normal”, “right”, “wrong”) and what could be extension of someone’s ideal of morality.

Paul Isaacs

Now what else I would say about this is false belief systems have to be procured and recycled.

It needs to be fed from generation to generation. This means that if these ideals aren’t challenged they cannot build fertile grounds of change.

Be Kind & Understand Why

This on a personal level this has brought me peace, balance and objectivity now I am not procuring bigotry or saying it is right, quite the opposite.

Sadly psycho-social and environmental underpinnings of ignorance have to be understood in order to give an opening for growth and internal change.

So in many ways the people whom projected their venom on to me. Did they have –

Information processing challenges?

Learning difficulties?

Their own developmental challenges?

Mental health conditions?

Challenges around attachment?

Personality disorders?

I thank these people for at the very least giving me a very clear framework of how not to treat other people.

Polly Samuel’s Fruit Salad Analogy

In the interview I talk about Donna William’s’ fruit salad analogy and how it has helped me grow not only in a professional capacity but personal one as well.

Over the years of being speaker, trainer and consultant I have used the foundation of her analogy and shared to masses so that people can be empowered (parents, carers, guardians teachers, mental health professionals and people on the spectrum) to get to the underpinnings of what is going on.

Could it be exposure anxiety? Could it be visual perceptual disorders? Could it be dyspraxia?

I am balanced that I don’t hold (and never will) all the answers and that in comes objectivity I do not speak for “all” on the spectrum that is impossible task.

I am but one person however what I can do is point out the multifaceted nature of “autistic fruit salads” and open up people’s perceptions.

In the end it isn’t about me, my ego, my status or my person it becomes about something greater other human beings.

Autism & Militancy

I am have noted the militancy within the autism community for many years, I am not affiliated with any groups nor do I procure to mantra of “us and we” which suggests that all people on the spectrum think and act the same.

I do not procure to using the word “neurotypical” as a slur with bigoted and separatist undertones.

How can one fight bigotry if you are willing to “other” people? Also I choose not to use that word because in my opinion there is no such thing because there are “non-autistic” fruit salads too.

Thinking About Human Beings

All people go through an AUT-istic stage of development.

People with autism can have non-autistic moments and experiences and people without autism can have autistic moments and experiences.

Lets be kind enough to presume competence, intelligence and in understanding the persons autism you have do not have to define their entire being by it because what else would be left? We have enough man-made divisions as it is.

I ask you do we need any more?

Paul Isaacs 2021


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The Toxicity Of The Autism Community

Narcissistic Projection, Adornment Narratives & Superficial Behaviour

We are all up for judgement my advice to anyone whom makes assumptions come to the person first rather than creating a reality in your in mind in which you believe to be real. In certain facebook autism groups have become contrived, toxic, self-serving and unhealthy to be around.

Ownership and Respect

This goes beyond the remit of healthy disagreement or a basic acknowledgement of someone’s realities. If assumptions and projected realities which I do not stand for nor the lack ownership for one’s words or how they looked.

Faux Inclusivity & Confirmation Bias

If people wonder why the autism community is so broken, then maybe we should start taking a look at the conduct that militant advocates are taking in guise of help, empowerment and inclusivity?

True Inclusivity – It’s More About Others Than You

Is it inclusive to ignore people with dietary disabilities, gut, immune and metabolic disorders?

Is it inclusive to ignore fundamental basics neurology and/or biology?

Is it inclusive to see autism as everything about a person? Despite the three dimensional aspect of all human beings?

Is it inclusive to ignore people whom are functionally non-verbal?

Is it inclusive to use “neurotypical” (I prefer non-autistic) as a slur, put down or form of othering? Creating more division?

Is it inclusive to disregard one reality of autism because it doesn’t fit the status quo?

Is it inclusive to project and force a narrative onto someone without giving them the time or space to make up their own minds?

Is it inclusive to gossip, flame, swear and demonise people purely because they have a different reality to your narrative?

Is it inclusive to divide parents and children?

Is it inclusive that militant cultural and curist rhetoric (yes they have much more in common than not) gets more attention, air time and superficial interest than actually making a fundamental difference to people’s lives?

Be The Change You Want To See

I ask you is that healthy? Balanced? Overall what standards are we looking for? We as human beings should be the change and set examples not become bitter and ego driven.

Self Respect, Self Acknowledgment

Some people just take this playground mentality around with them. Sort your own stuff out first before you expect any meaningful change from anyone. I know my own self well enough to what happen was wrong regardless and I have at least have some self respect to know I am not deserving of it.

So politics are creating more fertile ground for these self serving agendas then with all due respect I want no part of it.

Paul Isaacs 2021


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Profound Autism? Or More Complex Autism “Fruit Salads”?

Different Fruits Salads? Different Realities?

Some people have more complex autism “fruit salads which means the ideas around need certainly to addressed. Terminology does become polarising and inclusivity means looking at all realities, including one’s which challenge people.

Difference In Information Challenges?

Complex autism “fruit salads” may have these pieces. There are significant differences in Asperger’s and autism “fruit salads”. To say they are the same is misdirected.

Profound “autism fruit salads” could look like as follows-

Language processing disorders (aphasia/verbal agnosias).
Visual Perceptual disorders (face, meaning or object blindness).
Oral or full body apraxia and other communication challenges.
Body disconnection/body blindness (body agnosias) making one prone to self harm.
Underlying gut, metabolic or auto-immune challenges to information processing.
Acute levels of Exposure Anxiety.
Secondary Mood, Anxiety and Compulsive disorders that may have been present infancy.
Are still living in the System of Sensing.
Overall higher levels of visual-verbal information processing challenges.

Conclusions

Identity?

This means that you understand the pieces, produce competence and intelligence and never over invest in these challenges being “them”.

Politics?

Advocacy should always be a balanced, inclusive narrative. I see it as a professional responsibility not to feed the masses fables, buzz words or rhetoric.

Being Authentic & Objective?

It’s about being real and if that makes people uncomfortable then one must reason our why and come to a place of peace.

Paul Isaacs 2021


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The Problems With “Autistic Identity”& Stereotyped Perceptions

“Neurotypical” A Word Misused & Inaccurate?

There is no such thing as “neurotypical” in terms of a collective definition of people, viewpoints or principles.

It’s a word I never use as it seems to adorned a slur like status in projection. Bigotry is as such is not only based on stereotypes but I feel hinders more balanced narratives and objective dialogues and information sharing.

We Live In A Human World First Identities Come Second

This isn’t a “neurotypical” world either it is world full of different and sometimes conflicting ideas, notions and perceptions of “other” which then lead in extreme cases to towards conflicts in bias.

Autism Militant Projection & Distorted Narratives

Militant narratives burns more bridges than it claims to build, by having a narrow lense of how someone who isn’t on the autism spectrum acts, thinks, feels etc.

How does this build a platform for idea sharing, life sharing and forming healthy agreement and disagreement?

Non- Autistic Realities & Autistic Realities – All Human Beings Are Walking “Fruit Salads

There are different forms of non-autistic realities and some parts of those realities may be relatable to an “AUT-istic” experience such someone whom has faceblindness, object blindness or language processing disorder. In other words there are multi- faceted realities of being “non-autistic“.

For the AUT-ism is not a collective reality either, not everything is sensory, not everything is language processing, not everything is dyspraxia etc.

For these are potential facets of an AUT-istic experience but are separate and identifiable pieces in their own right, that can exist on their own terms and have different presentations.

The Problem With Identity- First Narrative

That is why Identity-First language is misleading because what “parts” one is choosing to relate may not be the “autism” (in their “fruit salads) anyway.

Paul 2020


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“Autistic” Identity & Sense of Self?

My autism dances with my personhood… and my personhood must also dance with my autism yet whilst not separable, nor are they interchangeable with each other.

Autism, Identity First Language, and Identity Blog 2014

Donna Williams

What is “Autistic Identity” is this narrative helpful? Or is its own simplicity, stereotypes, static and linear narrative actually causing more harm than good? Are people who do not fit the “look” being dismissed because of politics and hidden agendas?
 
Personality Types & Disorders in Autism
 
For example let’s look at personality types and autism – all humans beings have these mine are mercurial, idiosyncratic, serious, self-sacrificing and solitary this tempers my perspective, tolerance, outlooks and even my belief systems to some degree. When they become disordered this in term has an impact on presentation.
 
Social Perceptional Challenges 
 
Now there is sensory perception social emotional agnosia (not seeing body language, facial expression and tone of voice) and alexithymia (emotional awareness) is not SENSORY perception but SOCIAL perception.
 
Sensory Perception and Sensory Integration? Different Origins?
 
SENSORY perception simultagnosia, semantic agnosia and associated visual agnosias in which the person struggles with context, faces, people, visual mentalising and secondary factors with language processing what about that reality? Sensory sensitivities associated with psychosomatic amplification are different.
 
Language Processing, Perception & Articulation 
 
Then there is in language processing such as verbal agnosia the perception of words, receptive and expressive aphasia and ability to filter interpretation, sentence structure and may have secondary communication disorders such as body and oral apraxia. What about that reality?
 
Mental Health – Does This Change Presentation?
 
What about people who have mental health presentations such as dissociative disorders, attachment disorders, psychosis, anxiety disorders and impulse control disorder. What about that reality?
 
What About People With Impacted Health Systems?
 
What about people with gut, autoimmune, metabolic or collagen disorders in which they gave associated challenges around these conditions in top of any further information processing challenges above? What about that reality?
 
Autism “Politics” & Fixed Narratives 
 
What about people whom claim that people aren’t on he spectrum due to personal and potentially mitigated circumstances? An inability to see their reality, ideas or perspectives? So potentially setting up an assassination of character and allowing others to go along for ride? How is that care, compassion or inclusion?
 
I would like to further add that if someone whom was diagnosed in the 1960’s with “childhood psychosis” (which is what they thought autism back then) and later had been diagnosed with autism in the 1990’s along with other conditions throughout their adulthood (such as visual perceptual disorders, atypical epilepsy, dietary disabilities, malabsorption, collagen disorders/ehlers danlos syndrome), whom for many years their diagnosis was considered to be “fake” and a “fraud” despite historical evidence. Is that correct?
 
Is it fair that their character after over two decades of physical and sexual abuse (they had a mother whom was a attachment disordered serial pedophile and abuser) whom acquired PTSD and Dissociative Identity Disorder to be given the mantle of “fake”? Personality disordered? Emotionally dysregulated? Violent and infantile? I ask these questions because its certainly clear to me that it isn’t and yesterday it brought me great sadness because I know in my heart that this isn’t truth. Its not the writer of such things I upset by its the teller of those things. 
 
They are not here to defend themselves so the least I can do is send out a clear message do not dictate someone’s character second hand. Its that simple.
 
Identity vs. Reality 
 
“Autistic Identity” is a it’s own separate social phenomena in which people can at times cherry pick what “is and isn’t” their autism. One can supply facts with empathy and I have always remained objective and moderate in the world of autism. Let’s start acknowledging that “autism” was never one thing in the first place.

When someone is diagnosed with autism? Are there other aspects we have to consider?


So for example if someone sees there whole being as “Autistic” is that accurate? helpful? Should we be allowing this to happen?

Paul Isaacs 2020


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Autism The Personhood Acknowledged

Humility, Humanity, and Rhetorics

Laura Corker thank you for sharing sadly this treatment very common (common does not mean right, moral, acceptable) and nor should time be used as a reason or excuse.

Historical Accounts


This open, honest and saddening blog I feel helps explain my reasonings, for it is when people are reduced to being seen as one thing that the wheels of injustice begin to turn.

Autism, Identity and Historical Underpinnings

Frames of reference change from centuries to decades etc. People wonder why as person on the autism spectrum why I want to be seen as a person first and foremost.

To seen as a person, to be seen as a human being, to have healthy acknowledgment of one’s abilities and disabilities.

Conclusion

If we strip militancy and autism politics then I feel more realities will be touched with the depthful knowledge of shared realities.

Echoed within the eternal halls of telling that the mind scriptures do not become dust but are laid bare for futures to come.

Paul Isaacs 2020


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Autism & Identity

I have never seen all of my being as autistic because the word is an adjective a describing word of an experience.

Current Experiences

I experience face blindness, object blindness and meaning blindnessas I do a language processing disorder, hemiplegia, body agnosias and associated learning difficulties.

Past-Tense Experiences

There are also experiences in the past tense such as over coming oral apraxia, high levels of exposure anxiety, selective mutism and gaining functional speech although it was a long road to doing so.

Personality Types

I have personality types such as Mercurial, Idiosyncratic, Self-Sacrificing and Serious (all human beings have personality types of varying types).

Conclusion

Autism is not ALL it is PART OF I see myself as a person a patchwork quilt made of many things. Autism just “is” I am neither proud nor ashamed. I seek balance not objectification. 😊

Paul Isaacs 2019


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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