Paul Isaacs' Blog

Autism from the inside


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There Is No “Pure” Autism

An advocate felt it was old fashioned that autism and brain injury can coexist. They can present in some people’s developmental trajectory.

The problem with not being objective around the different trajectories in autism is that people’s potential realities get lost in rhetoric and the need to be popular and/or relevant.

Toxic Militants

This toxic militant form of advocacy I suggest newbies stay away from as it isn’t about making a difference it’s about filling a bullshit sandwich and making it look edible.

My Developmental Trajectory

So here’s the low down. I was born a month premature and the birthing complications which included placental abruption, fetal distress and c- section. The condition is called cerebral hypoxia.

I have always been open about this in my speeches and presentations over the years of being a speaker, trainer and consultant.

Signs of the nervous system being impacted were I was sleepy baby, photographic evidence in my early months such as fisted hands, the toes pointing upwards. This is called decoritcate posture.

Further neurological challenges such as language processing, visual perception and hemiplegia and gertsmann syndrome.

The Problem With Super Power Narratives

By suggesting that this cannot happen and always proclaiming that autism is a “super power” not only lacks objective reasoning, but also suggests that people do not have disabilities with their autism “fruit salads” in their own right.

Think Laterally About Autisms

For some it’s

Social emotional agnosia and social perception
Simultagnosia and Visual Fragmentation
Dyspraxia and Overload
Challenges in Mentalising
Challenges in Mental Health
Exposure Anxiety
Attachment, Personality & Identity


It’s multi-faceted. This also includes links with autoimmune disorders, collagen (ehlers danlos syndrome) and seizure disorders.

Paul Isaacs 2022


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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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Neurodivergence & Mental Health Podcast Interview By Sally Nilsson

Author of five books, Presenter, Consultant and CBeebies contributor, Paul Isaacs shares his remarkable story of overcoming many challenges in order to live his authentic and full life.


Paul’s parents thought he was deaf, blind and disabled as a baby. He was non verbal until age 7 and was bullied relentlessly through his life. Yet despite having Visual Perception Disorder, severe OCD and being traumatised by language difficulties, Paul has become one of the most well known Autistic Advocates in the UK.

Sharing platforms with Donna Williams, Temple Grandin and more, Paul has done more for autism awareness and action and language than most.


This episode is an honest and heart-warming journey into the life of a person who shows what it means to be Actually Autistic.

Podcast Conducted by Sally Nilsson

Paul Isaacs 2021


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Anna Kennedy – Autism & Mental Health Workshop

Mental health issues effecting 70% on the spectrum… a far cry from the old days where if you had any moodanxietycompulsivedissociativeattachmentadjustmentemotional or behaviouralpersonality or identity disorders or psychosis you were trolled with you ‘couldn’t possibly ALSO be autistic’. Alternatively people without functional communication who also have mental health issues traditionally have had their mental health issues almost as standard fobbed off as ‘part of their autism’.

Donna Williams 2016

Mental Health Co-Conditions Covered In Workshop

Mood Disorders

  • Emotional Dysregulation
  • Bipolar Disorder
  • Cyclothymic Disorder
  • Dysthymia
  • Depression

Anxiety Disorders

  • OCD
  • Exposure Anxiety
  • Social Anxiety Disorder/Social Phobia
  • Panic Disorders
  • Separation Anxiety
  • Catastrophising

Psychosis

  • Hallucinations
  • Delusions
  • Substance Induced Psychosis
  • Schizophrenia
  • Schizoaffective/ Schizophreniform Disorder
  • Catastrophising – Psychosis Related

Impulse Control

  • Body Repetitive
  • Bruxism
  • Dermatophagia
  • Skin Picking
  • Nail Biting
  • Nose Picking
  • Hair Cutting/Hair Plucking
  • Self Injury Disorder

Attachment Disorders

  • Attachment Disorder
  • Reactive Attachment Disorder
  • Social Engagement

Dissociative Disorders

  • Autistic PTSD
  • Derealisation
  • Depersonalisation
  • PTSD
  • Dissociative Disorder NOS
  • Dissociative Identity Disorder

Autism, Asperger’s Syndrome and Aspinauts

What Helped Me? (Personal Perspective)

Paul Isaacs 2021


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Lenny King – An Autism Journey With & Presuming Competence

Lenny & His Mum Sharon
Lenny & His Mum Sharon

I first met the friendly and welcoming Lenny many years ago during a consultancy session

Lenny King is an endearing, funny and compassionate young man whom is thriving in his teenage years. He has a deep and close relationships to have parents and sister Rosie and has a sense of wonder and interest about the world around him.

Oral Apraxia, Echolalia and Language Processing

Lenny was diagnosed with on the autism spectrum when he was 2 years old, meeting him it is clear that he has oral apraxia and this is to do with speech organs in the mouth (tongue, jaw muscles, lips) not going tandem with what someone is saying. He has echolalia and this is do do with having a language processing disorder and creating one’s own language (patterning, theming and feeling) – with emotional context, phonic relatability and feeling words as opposed to their interpretive use.

Lenny has a great affinity for music and enjoys and eclectic array of songs – this seems have a profound impact on him as his body moves, sways also most in its own synchronistic modulations.

Sensory Perception, Object Blindness (Simultagnosia) & Meaning Blindness (Semantic Agnosia)

Lenny navigation of his external world suggests that he has sensory perceptual challenges if one can imagine for a that your sensory organs work but the feedback or information gets fragmented or distorted in some way – what system would you use? To create connections he is tactile kinesthetic in which he will feel his external world with great intent such as sand, blades of grass etc, When walks into a rooms he goes in around “dead space” and at times looks through and use peripheral vision to free information processing to “see”. This is extends to the way in which Lenny communicates and interacts with people touching their faces could be a way of creating context and association on a personal and emotive level.

Faceblindness, Body Agnosias & Mirrors

Lenny is fascinated by this face in the mirror and he at times brings his face up close and makes very distinct contortions around his mouth, lips and teeth. He seems to pay great inspection to these areas and there could be many reasonings to why this is happening.

Some people can be faceblind to their own face and on a subconscious level building up an external movement based “map” of what certain gestures look like could be one option, the other could be that he sees this person as an existential “friend” or “familiar person”. It took Donna Williams well into her twenties to understand she was looking at “herself” and me until I was sixteen. The final one could be a marriage of the above and be an getting a sense of his own “body as a whole” with the specific sways, body pressure and movement a to great a sense of reality and clarity/association.

Competence and IQ

I remember saying Lenny once not long ago “You are intelligent” to which he quickly replied “Yes!” this suggests to me that although he has complex language processing, sensory perceptual challenges and communication disorders and that his systems are on the plain of sensing much live his sister Daisy – in which he feels, merges with people, places and his surroundings and is able to connection on an emotive/introspective level that must never assume that “intelligence has a look”.

Lenny is intuitive, friendly, personable and highly idiosyncratic and self driven in all areas of his life and it is pleasure to be in his company.

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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NAS Lambeth/A2ndVoice Workshop – Autism & Education From A Personal Perspective

This workshop is about Autism & Education. Hosted by Venessa Bobb.

Further Information & Reading

Donna Williams Autism Hangout Video

Donna Williams The Fruit Salad Approach

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