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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Being Thankful for My Parents

Note this is from a personal perspective

Being thankful is a term used for many different contexts, it has different meanings, associations and be it personal or professional and it can come from an emotive place deep within someone’s being and soul to take a humble acknowledgment of the foundations laid bare that I had no control of (no person does) but giving it some thought and the time to do so has made be reflect on my early years.

Not Knowing But Still Doing

I was born in 1986 and my parents had now knowledge of the word “autism” for it would be many years before the word would be uses, so one must get by the frameworks and current situation in other words my parents not knowing did it hinder? Or through this did it urge them to be me more holistic, creative, and more practical in their approach towards me as a human being? I think it did.

Different Systems & Trajectories

If I would had been diagnosed it would have been of “classic” autism this wasn’t just about milestones speech, language and motor delay were noted – I was also hemiplegic, had visual perceptual disorders, face, object and meaning blindness and well as being meaning deaf and having a language processing disorder some of this partly due to being brain damaged at birth.


I lived (and still due to some degree) in the system of sensing, was tactile kinaesthetic, had pattern, theme and feel language – but my parents saw me as their child, their son and valued member of the family this speaks values not only of one’s character and the wordless observations at the time but the patience and nurture that goes with being a caregiver.

Many adjectives and observations were made the idea that I was deaf and blind, having an attachment disorder these were all perceptions (rightly or wrongly) put upon not only me but my family. The way in which my parents dealt was in a a very holistic and fluid way the expectations they had for me was simple but would later a sturdy foundation to build from “happy”.

Autonomy, Growth & Boundaries

Now that is one emotion of many they cared not for existential things, materials or hierarchy or work or education because that was something I would do on my terms, they offered the values of autonomy, the healthiness of failure as a normal part of life and the sanctity of self-exploration.

As I have grown, I have valued their company, their need for boundaries, direction and care which has built up a mutual respect but not tipping into areas of blurriness of misinformation, but all our cards are held to each other we know where we stand.

Conclusion

The greatest gift that many are denied from their parents and caregivers (at many times through no fault of their own – just repetition of generational patterns) is the ability to grow into one’s own connected self this is something I hold dear and treasure.

Paul Isaacs 2021


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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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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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NAS Lambeth/A2ndVoice Workshop – Autism As A Fruit Salad & Sensory Perception Issues

This workshop is about Donna Williams’ “Fruit Salad” analogy of autism and sensory perceptual challenges and agnosias in the context of autism. Hosted by Venessa Bobb.

Further Information & Reading

What Is Autism?

Common Pieces In Autism “Fruit Salads

Sensory Perception in Autism

Paul Isaacs 2020


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Autism Bucks Workshop – Autism As A Fruit Salad

This second workshop is an expansion of autisms using Donna William’s “fruit salad” analogy as the basis. I shall be adding links to expanding on some of the aspects which I spoke about.

Further Reading and Links

Autism & Social Emotional Agnosia

Autism & Alexithymia

Autism & Simultagnosia

Autism & Faceblindness

Autism & Auto-immune Disorders

Autism & Genetic Syndromes

Autism & Dietary Disabilities

Autism & Language Processing Disorders

Autism & Communication Disorders

Autism & Dyspraxia

Autism & Self and Other Integration & System of Sensing

Paul Isaacs 2020


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Donna Williams – Autism Beyond The Narrative

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It’s a very lonely road at times with my autism work and advocacy and here is why, I know as I type things will make more clarity as I continue to type.

Remembering Polly

Since Donna Williams’ passing in 2017 I have tried to advocate for her fruit salad analogy of autism (please checkout previous posts, links and images etc). I know that over her years of advocacy and consultancy she had her fair share of problems and challenges.

Militancy Loses Objective Reasoning  

Militant autism advocates (on and off the autism spectrum) attacking her online for daring to challenge the status quo, rhetoric and internalised problems within the autism community.

Misunderstandings in her non- soft language terminology and her ability to supply “what if” scenarios etc.

This can a does become tiring on both a mental and physical level as to supply knowledge, it isn’t always easy however I try various different formats and medias to do so.

I believe that the ethical and moral thing to do is to supply with empathy and candour the multi-faceted nature of autism, the presentations, the mechanics and personhood.

What Really Is Empowerment?

Why? Because empowerment in this context means giving people tools to make good in life, to find themselves and be ultimately the best version of themselves. So many people cherry pick what autism “is and isn’t” and that is completely understandable because knowledge is not on the table to be supplied.

So anybody interested in finding out more?

Take time in ingest the knowledge and please know as with Polly my heart is in the right place.

Thank you Paul 😉👍 2020


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Autism, Information Processing and Coronavirus

See the source image

Note – This is from a personal perspective 

Alexithymia & Emotional Processing 

Not knowing one’s own emotional states means that I struggle to connect my conscious and unconscious mind, incoming information doesn’t filter into a connected thought, feeling and inner response which is marrying up with my inner states.

Visual Perceptual Disorders, Aphantasia & Mentalising 

Aphantasia is a condition where one does not possess a functioning mind’s eye and cannot voluntarily visualize imagery.[1] The phenomenon was first described by Francis Galton in 1880[2] but has since remained largely unstudied. Interest in the phenomenon renewed after the publication of a study in 2015 conducted by a team led by Professor Adam Zeman of the University of Exeter,[3] which also coined the term aphantasia.[4] Research on the condition is still scarce.[5][6]

Visual learning is the most common form of accessing the information around you, I cannot  retrieve visual information and I do not have a “visual mind’s eye” this is called aphantasia. The aspects that I struggle with are visual fragmentation and simultagnosia (object blindness) and a residual level of semantic agnosia (meaning blindness). So watching the news and making visual-verbal connections takes time for me to access and apply meaning with my system which is largely kinesthetic in nature.

Tactile – Associative Synesthesia & Building Frameworks

There are many different types of synesthesia, but they may be categorized as falling into one of two groups: associative synesthesia and projective synesthesia. An associate feels a connection between a stimulus and a sense, while a projector actually sees, hears, feels, smells, or tastes a stimulation. For example, an associator might hear a violin and strongly associate it with the color blue, while a projector might hear a violin and see the color blue projected in space as if it were a physical object.

The way in which I build up frameworks is always on an emotive level I am unaware of my feelings from moment to moment, so I have to EXTERNALISE unconsciously in to text which can be creative in content, emotive and introspective and/or art work which can be abstract an metaphorical in representation. I am not a literal, logical processor of information and I do not have social emotional agnosia  that comes from disconnection of right hemisphere. So INTERNALISATION  comes from the marriage creative process as opposed to overtly factual and linear ones.

Aphasia & Language Processing 

Currently I am around 30 percent meaning deaf which means I can take in large amounts of information for a a short period of time, however I may begin to be flooded with a vast a array of language in which my mind cannot keep up with, it becomes distorted and slowly meaningless, so managing my time and input is crucial.

Conclusion

It is best for people to understand their own autism “fruit salad” and what works for them during times of great uncertainty and distress, build up a level of self-awareness or have someone around you that healthily acknowledges your challenges but still retains the autonomy and respect of seeing you as person.

Paul Isaacs 2020