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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Autism, Visual Perceptual Disorders & Tinted Lenses Videos

Note: This is from a personal perspecitve and doesn’t represent all people on the autism spectrum with or without the co-conditions mentioned

These interviews were conducted at the NAS Conference in Telford – In these interviews I talk about visual perceptual disorders, agnosias and tinted lenses in the context of autism. I would also like to stress that everyone’s autism.

 

 

Paul Isaacs 2016

 


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Autism & Visual Perceptional Disorders – Radio Interview “Reinventing The Illusion Of Vision” with Lawrence Bull

Overview

Last week I had the please of being interviewed by Lawrence Bull and radio presenter in  Australia of Think Digital Futures: Stories Of The Digital Age.

In this interview I cover from a personal perspective –

    • My developmental trajectory
    • My experiences of language development
    • My experiences of visual perceptual disorders
    • My experiences of not being a visual thinker
    • My experiences of tinted lenses
    • My views on autism and autism politics

Paul Isaacs 2016

 

 


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Supermarkets – Autism, Sensory Perception, Impulse Control & Alexithymia

Note this is going to be from a personal perspective of how this affects me.

For me supermarkets are very much I love/hate relationship they are full of things to do primarily shopping for goods that you need for your home or otherwise.

However the way in which my autism profile works there are issues related to sensory integration, sensory perception, impulse control and emotional recognition.

Sensory Perceptional Issues

In previous posts I have documented how my fragmented vision affects the way in which I “see” and “process” the world around me, this includes of course environments in which I am being bombarded by stimuli but one of the things I have to put one hold is the want to touch and experience everything I can within the store.

This is not related to the literal aspect of the what the object is but how it may sound, smell and feel etc.

Plus getting visual information for me alone is redundant so the irony here is that touch gives me far more “meaning.” than just looking.

Impulse Control Disorder (related to sensory perception)

This impulsivity can include getting “chemical highs” from objects, shimmers, shines, textures, noises, sounds and smells these in some contexts can be very distressing for me but in other contexts they can be alluring and very much a “want” of course a “need” is very different from a “want”.

Alexithymia – Could That Be Another Factor?

Processing incoming emotions (and naming them) for me takes about 24 hours in general and longer depending on the situation.

I wonder because I am getting a “bodily high” that is enough for me to get a “feeling” that comes from the outside in spurring on the impulsive want that then relates to impulse control?

Getting Grounded

What I have done over the years has been able to self-regulate on a level where even though those a initial bursts may happen I am able to keep on task and do what I have to do.

My tinted lenses help not only with piecing the world together but filtering the lights and giving me clarity.

Headphones and music also help me as this keeps me on topic
by sorting out what the relevant factors are (and just as importantly what aren’t). It gives and foundation not only of empowerment and ownership for th person but a confidence can challenge themselves in otherwise difficult situations.

Paul Isaacs 2015


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Autism -Myopia (Short Sightedness), Visual Agnosias & Tinted Lenses

Overview

Note – This is from a personal perspective

As a child I appeared both deaf and blind due to complex visual and auditory agnosias which affect how I “see” and “hear” the world, when I was 5 years old I was diagnosed with shortsightedness (myopia) in my right eye and given glasses what this blog is going to go through is the the differences between and physical sight issues and neurological percuta sight issues and in my case how they can co-exist, what worked and what didn’t.

Myopia

Sort Sightedness And Conventional Glasses

In my right eye I have slightly blurred vision this is due to a condition of the eye called myopia, this can be “corrected” either by eye glasses, contact lenses or refractive surgery. I had conventional glasses at 5 years old, however by “correcting” the physical aspect of my right eye it didn’t “correct” the complex neurological aspect – visual agnosias – and this what was still persistent during my years with conventional glasses – which are

Brain Lobe 2

Visual Agnosias – “Blindness ” In The Brain Conventional Glasses Didn’t Help My Visual Perceptual Issues

Visual agnosia is often due to bilateral damage in the posterior occipital and/or temporal lobe in the brain

With my conventional glasses all the problems were still there all during my educational years I had challenges with visual fragmentation only seeing “pieces” never “wholes”, not seeing depth (everything seeming flat and 2D) , not seeing with meaning, reading with meaning, letters and numbers being jumbled, my sense of body was “fragmented” and where my body was in space, time and movement even with my right eye “corrected” I was neurologically “blind” to the right side of my body and what I was “seeing” – as I have stated in previous posts because of my visual agnosias I live in a sensory based world.

CONVENTUAL Glasses Caused

  • Headaches
  • Eye Strain
  • Heightened Fragmentation
  • Increased Fatigue
  • Decreased Concentration

Tinted Lenses – Fitted 2012

With years of having conventional glasses I was diagnosed formally with scotopic sensitivity syndrome, visual agnosias and learning difficulties by James Billett.

When I first tried my tinted lenses on it was like magic in many ways as I saw things wholes, my balance and body language improved instantly, words and letters where configured more, I read faster processing words quicker and numbers quicker, I moved better in space and could process visuals in light.

Conclusion

From a personal perspective myopic vision and visual agnosias both play apart in the way I perceive the world however I would say the agnosias had the greater impact in my case as my Mum thought I was totally blind in my younger years, but I’m glad that although shortsightedness was recognised that eventually my visual perceptual disorders where finally recognised too.

Maybe we need to look at folks on the spectrum who have both issues with their eyes and visual processing and see what works best for them for me personally conventional glasses didn’t work but tinted lenses do.

Paul Isaacs 2014


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Tinted Lenses – Autism, Visual Fragmentation, Visual Agnosias & Learning Difficulties

Me with Tinted Lenses

Me with Tinted Lenses

Overview

Note – This is my personal experiences of Tinted Lenses, Visual Fragmentation, Visual Agnosias & Learning Difficulties

Until 2012 I have lived in a world with was visually fragmented, I saw everything in pieces faces, bodies, objects, my whole visual field was distorted, my writing was not very good nor was my processing of words and numbers.

I live in world before “meaning” – so getting semantics was and at times is difficult for me.

Diagnosis Overview & Book

I was diagnosed in 2012 by James Billett who I have also co-authored a book called “Life Through A Kaleidoscope” in 2013 – I’m very grateful for his help guidance and wisdom, he is a kind thoughtful person who takes a person centred approach to every person he sees. 🙂

What lenses have done is help me integrate and “generalise” images in “real-time”, I still have no visual memory that is to do with brain injury at the back of my brain, but it has made a positive and productive difference to how I move around and “map” visuals – amazing. 🙂

Diagnosis Of Scotopic Sensitivity Syndrome /Light Sensitivity /Sensory Integration Disorder

I find it hard to track visuals in harsh light that includes day-light at times the light further distorts the images in front of me, they are tursch and flat with no depth it took until the age 27 to understand the concepts of foreground and background (but I still resort to processing “bigger” and smaller”.)

Diagnosis Of Visual Agnosias/Sensory Perceptual Disorders

  1. Prosopagnosia – Faces to me are pieces, fragments, blocks of colour and shimmering movement I cannot piece the whole visually nor in my mind as I have no visual memory to do so.
  2. Simultagnosia – I see only “pieces” of my visual field, fragments of information, pieces of visual information such as bits of people, objects, movement again I cannot “generalise” what I’m looking at.
  3. Semantic Agnosia – I see without meaning and my primary form of “communication” is to touch, lick, sniff, rub, tap my surroundings to understand what is in front of me this includes sculpting faces
  4. Visual-Verbal Agnosia – Reading text without meaning – I may get the phonics right but retain no meaning from what I’m reading much like “written echolalia”

Diagnosis Of Learning Difficulties

  1. Dyslexia – Problems with reading and writing, skipping text, slow to process words on the page, shimmering of text.
  2. Dyscalculia – Problems with all aspects of maths – processing numbers and symbols – Other issues include From Agnosia and Dysgraphia

Paul Isaacs 2014


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My Autie Books 2 – Life Through A Kaleidoscope

Life Through A Kaleidoscope

Life Through A Kaleidoscope

OVERVIEW

Life Through A Kaleidoscope”

Co-Authored by Irlen Consultant James Billett 

Agnosias Confirmed

  • Visual Agnosia
  • Prosopagnosia
  • Simultagnosia
  • Semantic Agnosia
  • Visual-Verbal Agnosia
  • Learning Difficulties Confirmed
  • Dyslexia
  • Dyscalculia

Book Description 

Paul Isaacs was diagnosed with Autism in 2010 and later diagnosed with Scotopic Sensitivity Syndrome by James in 2012. He has worked for Autism Oxford since 2010 presenting speeches and training sessions all around the UK. He has currently released his autobiography through Chipmunka entitled “Living Through The Haze”. This book explores the visual differences and difficulties Paul has experienced for over 26 years. For Paul it was a moving moment of clarity and realisation when with the correct lenses he looked outside and said “Oh, the tree has a middle bit!” James Billett has worked and taught in the field of special education for 30 years and has used the Irlen method with clients across the spectrum of learning differences since 1991.

AMAZON.COM

AMAZON.CO.UK

Paul Isaacs 2014