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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Autism – Context, Mentalising & Intentions

This information below was supplied by a friend on the autism spectrum and with kind permission allowed me to share this via my blog.

Many of you who are Autistic/ASD may have come across the AQ-10 triage test the GPs use to decide who to refer for a full assessment.

However I know some people who fail the test because they don’t understand the questions. The way they are put in the questionnaire they tend to answer based on what they think the question might mean. For example, it is well known that many autistic and neurodivergent people find metaphors difficult to understand . so question ” I find it easy to ‘read between the lines when someone is talking to me.”

Some answer that they don’t have a problem when if they understood the question they wouldn’t. One chap I spoke to thought it meant keeping your place in a book when someone talks to you while reading. We need to do something about this.

Autism & Context?

Those with social emotional agnosia may well have challenges in the area above with regards to answering the questions – intention vs. implication of the question. This could also have further impact if the person has alexithymia, visual- verbal agnosia and/or dyslexia. If someone’s reality it garnering information in a factual way this of course relates to context and mentalising in which someone’s inner world (constructs, association & meaning) is made.

If someone for example is conscientious and has obsessive compulsive personality disorder (which has 40% percent cross over with Asperger’s syndrome) many want the information to be done in the correct way which may lead to secondary challenges such as analysis paralysis and social anxiety./phobia.

Conclusion

So maybe we have to look again the mechanics of someone’s autisms and how one can make adjustments that are tailored, individualistic and working parallel with someone’s system.

Paul Isaacs 2022


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Autism, Aspergers, Applied Empathy & Sensing

My Father as diagnosed with Asperger’s Syndrome in 2010. I am going to give a two basic ideas from personal person perspectives who (not from an identity perspective but from a profile perspective) how two different diagnosis under the same umbrella can be different experiences of personhood, reality and information processing.

Social Perception – Practical & Interpretive

My Father’s profile consists of social emotional agnosia this is a non-verbal language disorder and has an impact on social perception because he doesn’t process body language, facial expression and tone of voice – so this means that information (even emotional) is understood through facts, he has alexithymia, sensory integration disorder, dyspraxia and dyslexia.

He cannot sense but that doesn’t mean that he lacks empathy. He has to be supplied the information such a way which semantically in a list like fashion for him to internalise and mentalise with coherence, once that is done he is able to use a “colour by number” variation in which all his prior knowledge of situations is used.

Other factors include a poor care giving enviroment which impacted on his development he is conscientious, hyper-social logical, literal and has social anxiety.

I was diagnosed with Autism & Obsessive Compulsive Disorder in 2010, Visual Perceptual Disorders & Learning Difficulties in 2012.

Social Perception

My profile consists of simultagnosia (visual fragmentation), faceblindness & semantic agnosia my social perception fragmented so I have to use auditory an tactile association to mentalise as well as being aided by tinted lenses, alexithymia, body agnosias and hemiplegia (cerebral palsy) make me disconnected from physical form, aphasia means that I struggle with after between 1 to 4 hours with tinted lenses to get a “shared sense of social” .

Applied Empathy – Sensing & Mergence

I can sense and merge with people readily when this happens I am unconsciously filled with the person’s internal states of mind (personality, core beliefs, trauma) and everything that goes with it along with my own emotions. I have to externalise to internalise in which I use art, poetry, creative writing read or look at and the learn about myself and potentially others.

Other factors include poor educational environments, being idiosyncratic, self sacrificing as well as being asocial, less logical, less literal and have exposure anxiety.

Conclusion

Its clear that the two systems have a different way of applying, rationalising, mentalising and exploring empathy and the differing informational processing underpinnings that although on the surface may be deemed as “the same” are actually quite different.

Paul Isaacs 2022


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Looking At People With “Complex” Autism Fruit Salads

Note this is from a personal perspective, professional and observational perspectives – photos supplied with kind permission of Sharon King.

Reference Points

When we think of the word “autism” what do we mean? What are we saying? Is it a person’s own observational perspective? Could it be what one has read in a book? Seen on the television? Or could it be around a family member or diagnosis that you have yourself?

What Lenses Are We Looking Through? Our Own? Or Others?

When I think of the words “autism” from objective stand point which filters in to my professional philosophy it must ultimately be person centred, there should be no room from stereotypes, misinformation, rhetoric, identity politics that ultimately cloud, divide and at times silence voices and realities. Inclusion should mean in principle a need to look at things other than your own lenses.

Patchwork Quilts & Fruit Salads

When I saw the both Daisy and Lenny King many years ago I was ultimately seeing people in there own right and consulted with the family and the different information processing challenges that they had.

  • Sensory perceptual challenges (face, object and meaning blindness)
  • Language processing challenges (aphasia/verbal agnosia)
  • Body disconnection (body agnosias, finger agnosias)
  • Communication challenges (oral apraxia)

The Precious Nature Of Seeing Personhoods

What I have enjoyed and still do as family friend is their company they both live in the system of sensing (a pre-conscious world in which they have mergence), they are fiercely and emotively introspective, solitary and self owning, they offer friendship and connectivity beyond interpretive frameworks but are still equally meaningful, they are idiosyncratic and individualistic and their intelligence is clear to those whom are open minded enough to presume competence and understand that autism doesn’t have “one look”.

Paul Isaacs 2021


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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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Autism, Information Processing and Train Travel

This is an article about autism and travel, on the context of a train station the potential pieces of a person’s autism and specific information processing challenges.

Face blindness

When on a train, waiting for a person at a station and/ or destination one may struggle with the ability to recognise someone by their face this is called prosopagnosia. Some people may need to different compensatory strategies to make the connection that they are a person that they know.

  • A board that has their name and the person’s name.
  • A familiar piece of clothing such as shoes, earrings, glasses etc.
  • The sound of the person’s voice.
  • The way in which the person moves such as gait, walk and stride.
  • Tactile and alternate sensory modulation to create association, such sniffing, tapping, rubbing etc.

Visual Perceptual Disorders

If a person has related visual perceptual challenges within a train station this can cause distraction but the way in which that connects with association is vast because of different experiences, variations and the personal emotions that got with.

  • Becoming increasingly “meaning blind” may mean the person goes into the system of “sensing” within their surroundings.
  • May experience intense euphoria and induced chemical highs due to simultagnosia and/or semantic agnosia’s. (fragmented vision).
  • May experience intense aversion and induced chemical highs due to simultagnosia and/or semantic agnosia (fragmented vision).
  • May need contextual means to be able to ground themselves this could be self-regulated or from another person.


Topographical Agnosia

When a person is in the same surroundings but cannot process or perceive where they are (even though they have been to this place many times) this could be to do with many factors – coming on a different train that is resided in a different place at the station for example or moving to the same location from a different angle.

  • Needing to find a place of association that is a landmark
  • Needing to be able to mentalise the new surroundings (through different modulations and associations).
  • Needing to be able to go to a place of safety.


Language Processing

This is a broad definition in which a person’s information processing ability to express and/or receive language may be for example be distorted the person loses words within a conversation. In a train station with external stimuli this could compound the ability to receive language further.

  • The person may need the aid of gesture and tone to get meaning.
  • The person may need the aid of objects of reference.
  • The person may need the aid picture/word association (if they do not have visual perceptual disorders).
  • The person may have delays in connections and a shared sense of “social” this means the person may only be able to do all self no other or all other no self.


Personality Types, Temperament & Resilience

It is worth noting that within the context of this article that other factors that come into is a person’s personality type which has its own values, systems, associations, temperament and varying degrees of resilience and association.

This means that if a person is idiosyncratic for example may have more novel ways of dealing with stress induced situations say than a more conscientious person who may be more linear.

Conclusion

In the context of autism this does count for a person is more than their information processing and one’s personhood rides with the latter and vice versa. People given the balanced nature of caregivers and other means of support can and do have the ability to change and adapt be healthily acknowledging their “autism fruit salads” but also their personhood to, for people are more than labels and so humanity starts with seeing people and everything that comes along with it.

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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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 & Language Processing Disorders Workshop

This workshop is about language processing disorders in the context of autism. Hosted by Venessa Bobb.

Further Information & Reading

Autism and Language A Journey To Functional Speech – Donna Williams

Wretches & Jabberers DVD Trailer

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