Paul Isaacs' Blog

Autism from the inside


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How Autism and Visual Perception affect Train Travel

Looking to provide the best possible experience for all passengers, GWR is working in collaboration for a second year with UK Autism charity Anna Kennedy Online increasing autism awareness to help its staff improve in meeting the needs of those travelling with autism.

For many with an Autism spectrum condition, some of the more commonly experienced issues is increased anxiety and sometimes overwhelming sensory processing information as well as the need for structure and reassurance.

There are around 700,000 people in the UK living with Autism – that’s more than 1 in every 100 people. GWR is committed to making rail accessible to all, and disability awareness forms part of that commitment. This awareness programme is improving the way GWR delivers customer service, emphasising the need for a tailored and personalised service for all customers, that meets their individual needs and wants.

Anna Kennedy OBE, Chairperson and founder of the charity shared: “ As charity we are proud to be able to help raise autism awareness for GWR staff. As a parent of two young men travelling by train has always been a difficult experience over the years due mainly to my youngest son who has significant sensory issues.

What can cause distress for him are whistles blowing, crowded platforms and noisy stations, doors banging can be a bit full-on and cause him anxiety due to a sensory overload. By sharing information with all staff this will hopefully help create a less stressful journey for him and many other families.”

Pete Dempsey, Operations Management Trainer at GWR, who is coordinating and helping to deliver the awareness sessions shared: “At GWR we strive to ensure all of our customers receive a great experience and part of delivering that aspiration is recognising that passengers have a wide variety of different needs, and different disabilities. We are pleased to be once again work with Anna Kennedy OBE and consultant Paul Isaac’s”.

Paul an Autism Ambassador and consultant to the charity has a diagnosis of autism and also has difficulties with visual perception. Paul and Anna met with Peter and shared how his difficulties impact on train travel.

Please see some of the issues talked about at the meeting which was then shared with GWR staff:

1. How does visual perception have an impact on your travel?

Visual perception in the simplest form is the ability to recognise, faces, objects, people, buildings etc 70 percent of information is visual so if you have perceptual challenges in these areas and a lot of the cues are visual (trains, maps, stations) then you can understand from a personal perspective how difficulties arise

2. How does visual perception have an impact on your surroundings? In train stations?

Without my tints all I can see is contrasts, colours and pieces of my surroundings with the inability to “join the dots” and create meaningful contextual relevance to what is being seen. I rely a lot on placement (things having continuity), voice recognition, my own patterns of movements in a round the space and area I am going.

3.How does face blindness have an impact on travel?

When I met people during a journey I struggle with processing faces so that means that I can search for someone quite readily regardless of how many times I have seen them. So what helps is people approaching me first as I usually wonder and/or go around the place or stand waiting, I try to remember their voices patterns, accents etc as way of gauging who they are, I look at people’s gait and patterns of movement

What also can help is the person saying who they are stating their full name and a prior situation which we have met before.

4. How does object blindness have an impact on travel?

If one is object blind its the inability to “juggle” multiple forms of visual information at once rendering the person not being able to see things in “wholes” only “pieces” this can mean that what I struggle with is firstly getting the relevance of what I am seeing, my conscious mind is being enveloped.

5. How does meaning blindness have an impact on travel?

Seeing without meaning is a difficult concept for people to understand because the sensory organs (eyes) work despite the processing of information being blocked in some way. If someone cannot “see” with associative “meaning” that means that the person needs to bring things to “life” through other means such as touch, texture and odour in my case give me an association and thus a memory. The problem I have is that I can get lost in colours, shimmer and shine so when moving around my environment I have to use my conscious to not get “lost” in the sense.

6. Does it have and impact on processing maps?

It does because I cannot transfer the map and internalise them into a meaningful process that relates to what am reading in the association with were I am going.

7. Does it have an impact on your energy levels?

Of course that has an overall impact on other areas of my functioning such as language processing so I sometimes have to rest between stops if I have enough time.

Peter Dempsey and AnnaKennedyonline are pleased that working in collaboration GWR 3500 staff are expanding and improving their knowledge on social requirements for those individuals diagnosed with an Autism spectrum condition

Paul Isaacs 2019


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Egotisms vs. “Developemtnal Egocentrisms” – Understanding “Other Through Self” In Autism

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Note – This is from a personal perspective.

To be a egotist one must have a self-inflated sense of “self” (the ego) in which everything has to be about them, for them and with them you could construed this a narcissism and unhealthy relationship with ego and the ability to get “other” as necessary part of life. This doesn’t mean that people with autism cannot be egotists by the way.

Oxford Living Definition

1.1 Centred in or arising from a person’s own individual existence or perspective.

‘Egocentric spatial perception’

“Developmental” Egocentrism

This on the “surface” in its multiple forms see like the “same” if a person taps on the surface this could be as so but what is the person is trying (unconsciously in some cases) to understand other?

Faceblindness and Mirrors

It took me years up to the age of 16 years to realise that the “friend” that followed me into the bathroom and public toilets was “me” I sought a lot of comfort from “him” as I stared into the mirror I wasn’t aware that it was “self” so I played with the “friend” pulling faces, gestures, expression contorting my features etc.

Transfixed I would struggled to perceive that was in the mirror was behind “me” leaning the toward the mirror I would try to pick things out of it not understanding the concept of “mirror” is reflection one’s own physical form.

Meaning Deafness and Echolalia

I would have contradictory experience with being profoundly meaning deaf all around me was fragmented people making “soundscapes” to one another.

This would both intrigue, annoy and frightening me depending on the context, the people and the situation. Listening to jingles, TV shows and VHS’ was indirectly and opening for “other” I could follow the patterns of the program endlessly as they were in the end a linear form of repetition of sounds, colours and movements.

Visual perception and Making Connections

Being both meaning blind and object blind meant my visual world was redundant and I was only using up to 30 percent of information (taking into account visual perception is around 70 percent of information).

I would “live” in a system of sensing (before typical interpretations and applied meaning) for connected experiences they had to come from other senses, touch, taste, smell and movement gave “life” to my physical environment. I would connect with “people” in a fragmented manner smell, touch, patterns of movement etc.

Using One’s Own “System”

I have no doubt in reflection on my experiences that I have made progression in many areas however the point I am trying to make is the context of autism is that “developmental egocentric systems” in my case were used as “bridge” unconsciously or otherwise understand “other”.

The internal struggle was the blockages developmentally and neurologically to extract my own though systems, interpretive systems and inner/outer dialogue of coherence at time where I could not get a shared “sense of social”.

Paul Isaacs 2018


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Tinted Lenses, Visual Perceptual Disorders and Bridging The Gap Between “Non-Visual and Visual Worlds”

Visual Agnosia Image 2017

Note – This is from a personal perspective

Visual Perception & Autism

Some people on the autism spectrum have problems with filtering visual information which in turn distorts perception and what one is seeing, interpretation what someone takes out of what is being seen in terms of context and association and mentalisation that ability to internalise and integrate the visual memory in the form of a coherent, connected and retrievable memory.

What Tints Can Be Used For?

If people live in a world of being object blind and meaning blind and ultimately context blind this can have an impact on socialising, bounding, learning and having the ability to retrieve multiple forms of incoming visual information at once. Tints work for people in different ways (if they are needed at all) – for some its sensory integration disorder, for some it is a level of dyspraxia, information overload and coordination, for some it is building up a visual context because of simultagnosia and/or semantic agnosia, for some its processing faces, for some its recognising and building upon and reading social cues, for some it is getting a sense of “self and other”, for some it is visual learning difficulties such as dyslexia, dyscalculia and being able to read and write with coherence, for some its aphasia and/or verbal agnosia and gaining a better grasp of language.

Donna Williams 2011

Personal Perspectives

70% of incoming information is visual and we take that information in as light waves – essentially as color. Tinted lenses are filters. They filter out different light waves. This reduces the level of incoming information which leaves a person more processing time. This can have different effects in different people. For some it may just help them relax more or feel more comfortable looking at faces or making eye contact, help them handle places with bright lights or being outside. For some it will allow them to read comfortably and with meaning or improve depth perception. For others it may help them better process language and ultimately speak more fluently. For some it may help them see things as a whole and recognise objects, faces, places, and begin to read context and social cues or have a better processing of a simultaneous sense of self and other.

Donna Williams

Tinted lenses have helped me glue together a world which was largely bits and pieces that seemed shattered and unendurable, people shatter into fragments, objects floating with no clear base, foreground and background interchangeable, familiar voices with no face that seemed to match the warmth of familiarity. My language was also impacted to a certain degree with no internalisation of the visuals around me. Now I have tints they have made able to see faces with a level of coherence, looking at faces now I see a “whole” rather than “pieces” I am able to focus on their movements, body language and words, I can walk down the street and look at faces, places and people with a level with a level of coherence, I am able to better gauge “self and other” in conversations. I still have visual perceptual disorders however the tints have opened up and bridged my “non-visual to visual” world greatly.

Paul Isaacs

Paul Isaacs 2017


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Autism, Visual Agnosias And Making Connections

Note this is from a personal perspective

As a child my Mum thought I was “deaf and blind” and this was to do with both “blindisms” and “deafisms” this is how it presented itself through behaviours that I did show.

Baby Pictures Deck Chair I Year Old

  • Staring through objects and people and appearing “blind”.
  • Getting stimulation and “lost” such as staring at water, lint and small fragments this would include finger flicking and hand flapping to “bind together” visual information and give coheranence.
  • Poking the side of my eyes to create colours also forcing my eyes shut at night to create internal colours and shapes.
  • Focusing on mouths rather than a whole face (which I couldn’t process as a cohesive whole).
  • Processing people in “pieces” focusing on one part of the body and neglecting everything else (this extends to the whole visual field).
  • Getting an external “reality” from kinaesthetic/tactile association such as touching, licking, sniffing, tapping rubbing my surroundings these are my “eyes”.
  • Connecting with people by “sculpting” their faces, rustling through their hair and thus creating association/bonding.
  • Using peripheral vision rather than using my central visual field sot “shut off” a part of visual processing.
  • Being lost meant that others had to find me.
  • Fluctuations and distortions in depth percpetion, foreground and background.
  • Filling in my time with repetition such as echolalia, videos and music that are unconscious thought and “being” as opposed to conscious thought and “doing”.
  • Finding people asking me directly to “do” difficult jolting my reality this is secondary to langauge processing disorders, aphasia, aqquistion of “self” and “other” which is also a result of exposure anxiety and problems with direct confrontation.
  • Finding objects, placement and context has to be formed on a personal level that means all things of significance and relevance must be on display.
  • When objects are not moving their reality is not acknowledged.

Context, Language and Perception

Having a level of visual agnosia, simultagnosia, prosopagnosia and semantic agnosia meant that association and context was and is at times is very difficult. As well as having a level of aphasia which meant the visual/language link took a long time to bridge and form.

Tinted Lenses

Tinted lenses have helped bring a level of visual binding, coherence and an ability to keep up with visual information at a much quicker rate, recognise non-verbal cues and sort out my placement while moving from place to place.

Paul Isaacs 2017


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Autism, Faceblindness & Social Media

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Note this is from a personal perspective

I got a good question from a Dean Beadle a international speaker on the autism spectrum with regards to faceblindness and the use of social media.

VOICE & PATTERNS OF MOVEMENT 

The way in which I recognise people I have documented in various other blogs with regards to “seeing” faces or rather not and that is through patterns of movement (the way in which the person moves their body around the enviroment) and the person’s voices. Context helps through understanding (their full full name, significance of were I know them from).#

fragmented-image-2013

SOCIAL MEDIA 

When it comes to social media it is best for people to message to help me remember where they came from. I do look for full names (that is a good start) and other contextual and associative information, although at times I have gotten it wrong in terms of sending the friend request to the wrong person it is a matter of trial and error for me. 🙂

Paul Isaacs 2016

 


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Life With Visual Perceptual Agnosias Within Autism

“Having Visual agnosias as apart of my autism means I rely on textures, sounds, movement and placement rather than logic or literalism. I know I live in a different world perceptually than other folks on the spectrum.”

Paul Isaacs 2014


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Visual Perceptual Disorders In Autism & Not Thinking In Pictures

Me On My Own

Understanding, Processing Visuals & Typical Interpretive Language 

Note this is from a personal developmental perspective 

For someone like me who got diagnosed with Autism in 2010 and later in Scotopic sensitivity syndrome with Visual agnosias (object, meaning and face blindness) as well as Visual-Verbal agnosia (comprehension blindness) and associated learning difficulties this is what I can relate to – I had oral apraxia compacted by auditory and visual processing disorders I saw  (and still  in the present without my tinted lenses) shapes, movements, colours and blobs and couldn’t contextualise where I was in space and time what I was doing (learning by route was a system I learnt) – I had speech and language delay as well as significant motor delays, echolalia and late speech compacted on my ability to understand typical language

I had NO contextual words within my head for along time (even though the capacity was there and I would have gleaming moments of clarity which no one saw or noticed) but I recited jingles, sounds, hums and treated words like “sounds” nor could I visualise words either.

I relate to Donna Williams in this way and it’s important to debunk the myth that all people on the spectrum are thinking in pictures when many clearly aren’t. I still find typical language difficult but I can but try to integrate as much as possible.

One must also differentiate and language processing disorder from mutism it was ironic though when I gained functional speech I had bouts of mutism so the two can interact.

I also have and Autie based profile as opposed to Aspie and this may certainly be one of the reasons why.

Paul Isaacs  2014