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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Exposure Anxiety – Working With Involuntary Compulsive Avoidance, Diversion & Retaliation Responses

Note this from a personal perspective of Autism & Exposure Anxiety

Viewing Exposure Anxiety As Ego-Dystonic In Adulthood

When I was younger I used view Exposure Anxiety as a part of selfhood in which it was both sanctuary and a cage, a place reside and to hide and place to regulate from the intensity of the nervous system response it would create.

Selfhood, Personality & Mental Health

My view of selfhood has progressed over the past decade with an understanding of personality types, attachment, sociability, core beliefs, outlooks, environmental adjustment and the disordered extremes which can a do entrench functioning.

Mercurial/Borderline, Solitary/Schizoid, Idiosyncratic/Schizotypal, Self-Sacrificing/Masochistic & Serious/Depressive.

I was diagnosed with Borderline & Schizotypal Personality Disorders in 2008 along with mental health conditions auditory hallucinations and psychosis.

Exposure Anxiety, Core Self & Perception

It has come to my attention through two friends also on the autism spectrum that Exposure Anxiety still has an impact on my ability to converse and interact. Impacting on friendships and a shared sense of social. I thank them for pointing this out as it clear on reflection it still is having an impact.

Here is how presentation EA presents currently (the reactions aren’t personal to the listener but a reaction to exposure the compulsive need to “get rid of” the feeling.)

  • Socially Distancing Dialogues & Observations
  • Stilted Telegraphic Language
  • Bouts of Temporary Mutism

How this relates to core self is for you to imagine if you wanted to want, wanted to be, wanted to connect but your nervous system response is blocking to protect the “core self” through a complex nervous system response it could dictate and take over the original contextual reasoning of the conversation.

Perception is multifaceted and also gaps in knowledge are perfectly acceptable, if my reactions are causing potential upset, sadness, frustration or even anger for that I am sorry because regardless of its underpinnings that is the reality for the people involved not myself.

From a personality perspective I am naturally solitary only letting a few people in to my world on a personal level.

Riding Along With Other Information Processing Challenges

Alexithymia means I do not always understand or verbalise my own emotional states in real time, then there is social perception which for me is a mixture of simultagnosia, semantic agnosia coupled with a language processing disorder meaning conscious thought and mentalising internal frameworks and word association can be slower.

Shared Sense Of Social

A reduced ability to get a shared social sense of self and other can be seen in the in Conscientious/Obsessive Compulsive & Solitary/Schizoid personality types/disordered variants. It can make people feel like they aren’t being listen back they aren’t receiving the “feedback” in real time.

It is also be seen in autism “fruit salads” to varying different degrees, presentations with varying components and this can have impact of connected responses and internalisation processes – all self and no other or all other and no self.

Failure Is My Friend

As odd and as counter intuitive as it sounds I am pleased to have met and embraced failure in this area, it keeps me balanced, humble, objective and understanding (at least from my own personal view) how brilliantly unimportant I am in the vastness of the universe.

Paul Isaacs 2022


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Halloween – Autism, Information Processing, Sensory Integration, Perception & Beyond

Note this is been broken down into three accessible and relatable aspects of the holidays with different observations of what could be happening – this is from a personal and professional perspective

Halloween that other traditions (old, new and reformed) happen at certain times of of the year, in which people act accordingly with the customs made. In its more commercial form Halloween includes buying costumes and masks, going around the neighbourhood asking for sweets – trick or treat and so forth.

I am going to go through some of the potential challenges that could present themselves during these festivities.

Fireworks

Those with sensory hypersensitive (sensory integration challenges), auditory processing challenges and hyperacusis may have problems with filtering the noises of the fireworks that could lead to emotional dysregulation and distress, developing phobias such as phonophobia.

This can be broken down into two processing aspects

Sensory Integration (auditory hyper-sensitivity, hyperacusis)

Auditory Agnosia (perception of sound and not knowing its origin)

Phonophobia definition

Phonophobia, also called ligyrophobia or sonophobia, is a fear of or aversion to loud sounds (for example fireworks)—a type of specific phobia.

It is a very rare phobia which is often the symptom of hyperacusis. Sonophobia can refer to the hypersensitivity of a patient to sound and can be part of the diagnosis of a migraine. Occasionally it is called acousticophobia.

Symptoms of Phonophobia

Desire to flee
Intense fear of loud sounds
Excessive Sweating
Irregular heartbeat.
Nausea or dizziness
Panic Attack (fight, flight or freeze)
Fainting
Severe mood swing after hearing the loud sound (emotional regulation)
Animals

Because of the dogs attuned hearing to pitch a frequencies they also react to sudden sounds which may also provoke feelings of fear, anxiety, aggression also there have been cases of animals being struck by fireworks it is wise to keep them inside.

Knocking On Doors

There could be a mixture of challenges going on here those with social emotional agnosia secondary social anxiety/social phobia may find the interactions difficult, for others it could be language processing (aphasia, verbal agnosia) and following the conversation with the inability to mentalise and also people with communication challenges (oral apraxia/body apraxia) whom struggle to express and need time to do so with presumption of competence.

Different processing challenges to consider

Social emotional agnosia (social perception, not perceiving body langauge, facial expression and/or tone of voice (atonia)

Aphasia and/or verbal agnosia (perception and processing of language, internalising and mentalising)

Apraxia (communication impact by movement of body and speech organs)

Topographical disorientation (challenges with recognising landmarks and places within their neighbourhood)

Sweets & Chocolates

For some people on the autism spectrum this could be a problem for people whom have dietary challenges, food intolerances and malabsorption. This could lead to the person becoming unwell such as stomach cramps, nausea, vomiting and diarrhoea and distress for the person.

Conclusion

When looking at the specific challenges that could and do present themselves it is important to try and internalise these potential experiences from the person’s perspective.

How do these experiences feel to the person?
What accommodations can I make to help?
Are you giving the person direction and autonomy?

Paul Isaacs 2021


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Anna Kennedy – Autism & Information Processing Workshop

Information Processing Challenges Covered In Workshop

This workshop gives an overview of some (of the many) information processing challenges that people on the autism spectrum experience.

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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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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Doing It Your Way – A Long Road to Autism & Self Care Skills

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Haha love this blog about autism and splinter skills and were one skill set can baffle and be up for contradiction in another.

Bathing, Temperature & No Sense of Time or Body 

It took me until sixteen onwards to understand the concept of bathing as a tool to wash your body in prior to this I would urinate in the bath, smear bubble bath liquid  on the tiles along with shaving foam.

A lot of times bathing the water would be too hot, too deep and would cause me to get light headed. I would sometimes lay in the bath for hours (until the water was cold), get lost dissociate, disconnect and focus on a fixed point and/or using the bath products.

The Art Of Toothbrushing

Tooth brushing I have yet to master, I have bouts of mild gingivitis, and a recent salivary gland infection which has “switched off” my left salivary gland. (I lose the patterns of how to brush my teeth for how long, the amount of pressure etc.) Dentists kindly remind me each time of how to do it.

The Delicacy of Shaving

Shaving my face I find odd too most of the hair density is below my jaw line, as such I am still so disconnected from body (so again losing patterns, strategies, movement and motion.) Leaving me with a blotchy and blood ridden skin at times.

Toilet Trouble 

Toileting is a lot about were my body is in relation to the toilet and pan, knowing the internal reasonings, feelings and sensations that go with it. This is secondary to shy bladder and bowel syndrome.

Mop Maintenance 

Hair brushing is a trial I have long thick curly hair and I have days and moments in which struggle  to obtain and use right brushes and the stratagems to untangle.

Learning, Context & Conclusion 

Context and meaning blindness, the inability to visually mentalise, visual perception, motion perception and body agnosias mean I rely on placement, position and associated contexts.

I suppose I did it my way.😉👍

Paul Isaacs 2020


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Autism, Mentalising, Alexithymia & Introspection

Note – This is from a personal perspective

Language Processing, Alexithymia, Visual Perception and Mentalising

As a child I was unable to process language with meaning this meant that the ability marry words with association, then the ability to reason those words into a meta-reality (context and how they “looked”). I was severely face blind, object blind and meaning blind this meant the inability to visual internally my external world meant that I had to use my body to EXTERNALISE to INTERNALISE in other words I mapped out my world through placement, smell, texture, movement and taste.

Body Disconnection, Exposure Anxiety and Dissociation

I was unable to map out my own body, its parts, their placement in association with me or the outside world so I had a level of body agnosias which meant my body with FRAGMENTED as well as my vision and internalisation of receptive language. My conscious mind was seemingly blank as I subconsciously took in the information around me in but was unable to consciously piece it together despite the fact is was near hiding in plain site, akin to playing smoke and mirrors but with my own self.

Exposure anxiety rendered me powerless when confronted with “self” the awareness of my own self existence was too powerful for me to handle. So I disassociated, created characters (each assigned duties, personality types, communication styles) to handle the task of being exposed, mutism, echolalic litanies (once functional speech was acquired).

However I seemed to retain the ability to have introspection, the system of sensing still means I FEEL first and then have to unpick the interpretation secound.
The Self and Other Paradox

Fast track to know I had an experience in which I got to that level which I have described bearing in mind this had not happened in roughly 23 Years! It was shock was unable to do a shared self and other (which can last up to two hours plus), language was losing meaning, visuals where fragmenting (I made error of taking my tints off) and I was feeling detached coming out with stock phrases and it made me think about how I was then

So with help, kindness and assistance of friends and colleagues I was able to map and piece together my emotional states through three videos.
Loss

This video signifies loss that the emotional roller-coaster of meeting loss head on, the process of emotion, the realisation, the impact it has on you and other around them and the great sense of vulnerability that comes with it.

Light and Hope

This video is more metaphor and symbolical in its reverence with me the smoke that plums as he enters the arena is has a great impact on me as it represents hope through the darkness, as he walks to the ring a single light envelopes him which for me feels that light can be achieved in times of such darkness, the creating of light towards end is hope.

This Detachment of Self and Other

The final video to me represents my sometimes lack of ability to get a shared sense of “self and other” and “shared social” in which my conscious thoughts are not married up straight away with other and vise versa, when I LOSE the ability to keep the process becomes mechanical, artificial the automata represents this aspect and also ALL SELF and Casanova represents ALL OTHER .

Paul Isaacs 2020


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Autism, Alexithymia, Dissociative Disorders & Trauma

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Note – This is from a personal perspective

Overview

In secondary school their was an isolated incident of sexual abuse which I was subjected to, this happened in the changing rooms and I have documented about how I had to get closure on this incident myself.

Alexithymia and dissociative reactions are two strategies that have been put forward as coping mechanisms to alleviate painful emotions. Adult studies reveal an association between alexithymia and dissociation. In line with the coping hypothesis, it was predicted that the relationship between alexithymia and dissociative tendencies would be partly mediated by current levels of stress and past traumatic experiences. Dissociation may also be related to enhanced fantasizing, although alexithymia has traditionally been associated with an incapacity to fantasize

Jennifer G. Schnellmann PhD, ELS 2005

Alexithymia has a common overlap with some people on the autism spectrum, in which the person has problems identifying, wording and extracting inner emotional states, having a language processing disorder no doubt hindered my ability to express (word finding and word losing), visual agnosias of varying kinds and degrees which hindered my to get gestalt perception and mentalise and thus extract the information and process it accordingly.

But imagine that as an autie you get tolerated in a mainstream school of bullying, exclusion etc…. so you try your butt off to pass as ‘non autistic’ or at least mirror others…. but on your own out comes your autie self… and over YEARS the ‘acting normal’ self becomes an ‘alter’ and has its own abilities, its preferences, its dislikes, the things its invested in, the things its disinterested in (like all the ‘autistic’ stuff… because it would attract more bullying, exclusion, etc)….

Donna Williams 2012

Dissociation Disorder & Repressed Memories

Coming to terms with my dissociation is to understand where it came from so here is the a list of events that interacted and caused dissociation and dissociative personas which then in tern effect the association of the “core self” which then in turn had an impact on my psychological and emotional development.

  • I was traumatised by children and teachers using functional speech and language at primary school because I could not keep up with it on an interpretive level (this wasn’t done on purpose nor was this anyone’s fault or intention).
  • I was put into adult situations at primary school with no advocate or caregiver present (teachers arranging meetings about “negative” behaviour prior and after functional speech so dissociation, personas and exposure anxiety were triggered).
  • Having body and pain agnosias meant without clothes on and/or pressure points meant I could detach and dissociate quicker.
  • Having prosopagnosia secondary to simultagnosia meant I bonded with the “person in the mirror” in toilets and washrooms.
  • Secondary school involved the use of three personas all with splintering personality types, learning and communication styles and “tasks” both motivational and/or otherwise to “protect” on a subconscious level the “core self”.
  • Only became self aware of being “different” at 16 and later was using word “autism/autistic” at 18, however lacked a self-awareness of my challenges to others and didn’t consciously change and/or suffer from avoidant and/or social anxiety/phobia.
  • PTSD in adulthood and repressed memories of sexual abuse came in later adulthood through nightmares and flashbacks in a distorted and fragmented fashion due to visual perceptual and language processing disorders.
  • Outlets for Alexithymia and emotional regulation came up more prominently in adulthood through art, poetry and creative writing and aided my ability to mentalise.
  • Being Mercurial and Idiosyncratic meant I could create novel, inventive and “odd” ways of distancing myself from emotional difficulties and pain.
  • Being in the “system of sensing” for far longer and still retaining aspects of it meant I valued the world and would sense the energies around me beyond their set interpretive “meaning”.

Accepting What “Brought me to the Dance”

I have no doubt that I have been coloured by my experiences, they mold people, influence, guide them, help them and sadly sometimes destroy them.

I have come to realise the value in experiences regardless of these being positive or negative I still learn from them.

They’re my teachers my reflectors and I refuse to live a half life in which my destiny is to be defined by things that were out of my control and contextual to the knowledge (or lack of) at the time.

Paul Isaacs 2020