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, Meaning Blindness and The Phantom Rainbow Flask

Related image

Note This was from a personal perspective

There are times when I even question my own perception visual and/or otherwise and got the the point wonder of how I cam to this conclusion.

Noticing An Object With No Context? 

I was presenting a workshop around a week ago and in the room something every so often was catching my eye and intriguing me, its was shiny and rainbow coloured in presentation however I ignored for a while.

Interpretive Meaning vs. Non-Interpretive Experience? 

I was then talking about experiences of being object blind (simultagnosia) and meaning blind (semantic agnosia) and turned the the object of intrigue and held it and proclaimed and questioned  “what is this?” in about 5 seconds or more the audience explained that it was a hip flask!

It just goes to show that even on a residual level my visual perceptual challenges take me by surprise this were I made an effort to remember the object by touching the its smooth and bobbled surface.

Paul Isaacs 2019

 


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Autism, Mentalising & Gestalt Perception

Note this is from person perspective

Gestalt perception can account for both strengths and weaknesses of autistic perception. On the one hand, they seem to perceive more accurate information and a greater amount of it. On the other hand, this amount of unselected information cannot be processed simultaneously and may lead to information overload. Autistic people may experience gestalt perception in any sensory modality.

Olga Bogdashina 2014

About a month ago I was a friend of mine who is a speech and language therapist who works with people with autism, brain injuries (associated with language processing) other other neurological conditions.

Visual Perception & Memory

She asked me about how I mentalise the world around despite having challenges with visual-verbal connections and the ability to “marry” words and images together. This made me think about how I piece my “world” together and what tools I have used to do so. So she suggested about a simple memory comparison which was to see in the mind’s eye a generic church figure which she could.

Sensory Associative Memory

I said that when I think of a church I think of the feel and texture of the grass, the feel of the aged stone walls, the loud squeak of the wooden door, the musky smell of the aged church. She said can you bring all the those senses (experiences) together. I said I cannot as I think of them one sense at a time.

There appear to be multiple pathophysiological mechanisms that result in apperceptive visual agnosia. These may be related to the misperception of shapes due to defects in representing the elementary properties of curvature, surface and volume149 or failure to integrate multiple elements into a perceptual whole.150 Patients with severe apperceptive agnosia usually have extensive and diffuse occipital lesions and tend to have residual field defects.151

D. Tranel, A.R. Damasio, in International Encyclopedia of the Social & Behavioral Sciences, 2001

Conclusion

It’s clear that I have documented about having faceblindness, object blindness and meaning blindness which of course leads to “blindisms” in visual surroundings in which one has “context blindness” in which objects, faces and places lose their significance and visual-verbal meaning.

However it is clear from this conversation that the way in which I store memories through fragmented pieces of information bring about and evoke an emotional connection with what I am talking about.

Paul Isaacs 2019


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So What is Simultagnosia & Semantic Agnosia? In The Context Of Autism?

Image result for occipital lobes and simultagnosia

Note: This is from a personal perspective

Simultagnosia is a condition that effects the occiptal lobes of the brain this is where visual perception and processing is connected, it also can have an impact on visual association, language perception/processing and overall navigation of the visual world around you.

“Blindisms” 

For me it meant not being able to access the visual world with coherence rendering me unable to access with my “eyes”and having to build up the visual world in a “non-visual” way such as.

  • Smelling
  • Touching 
  • Sculpting
  • Licking
  • Tapping
  • Moving

This started early in my development with my Mum’s observations thinking I was both deaf and blind (which is a common observation with people with visual agnosias) I was imprinting through EXTERNAL stimulus to build up a representation and connecting through other sensory modulations to make sense of the experience around me.

“Mapping” A System

As I have got older and with more awareness of the condition I have system in place where I do not hide anything from my view and placement of objects are important in relation to their context.

Context & Relevance

I still have a level of context blindness which means that things that are not being used “lose there relevance” (what they are, their use and function in relation to the environment) I may mistake objects for other things entirely and/or be caught up in how they make me feel rather than what they are.

Paul Isaacs 2019


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Autism, Musings of a Faceblind and Object Blind Child

As I child the lack of visual and facial coherence meant that the visual world didn’t pry for the bonding and connective meanings that relied of multiple visual stimulus’, faces meant nothing and visual association was hollow, flat and soulless so I didn’t apply the connections of “me”, you” and “I”.

My first friend was “water” not the interpretive word but the emotional recoil that I gathered and like a friend it was there to give and take. I would see the puddles, flush the toilets and knew from them what would come. A timely wave of energy which was a akin to expectation as the water flowed the twinkles of spray in the surrounding area and the light shards bouncing off the sun in the morning.

“Bear” was used as a transitional object he was large, course and scratchy and would sit next to me in the car when my parents went out and about.

The Mirror in the bathroom and other places was a constant source of fascination it took me until 16 to released that “him” was “me” but I found it a comfort not to be alone.

On a pre-conscious level I was “sensing” and “tuning in” to an apart of myself which I wasn’t able to make the connection with in real time so it was slow process from infancy to mid-teenage hood. Having a level of aphasia, visual-verbal agnosias delayed the process but I am thankful to have given myself a “project” to work on and to bridge the gap between my world, the world and other peoples worlds.

This was a feeback loop in which I was finding other through self and self through other (the sense that the person in the mirror was “other”) this brought upon the slow bridging between my internal world of sensing to a level of intereptation.

Paul Isaacs 2018


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Daisy King, Kabuki Syndrome and Autism

Daisy Image 2018

 

I first met the endearing Daisy King when I done consultancy work at The King’s home about two years ago, we have since become friends.

Daisy King is in the later years of teenage hood and is very charming, warming and loving to the people she meets. She does not have verbal speech however she shows her wants and needs through tonal modulation, directing the person, objects of reference and gesture.

She has low muscle tone (which is a feature of the syndrome) but that doesn’t stop her from wanting to get around to meet people, play with them or go for a walk with her friends and family, she has problems with feeding but has a tremendous appetite, she has her person care needs met by her family and big sister Rosie. She is loved and shows it in a give and take fashion.

Sensory Perception, Meaning Blindness (Semantic Agnosia)

I was 19 when my ex-shrink declared from across the room, ‘You have agnosia’. We’d evolved into a friendship thing and I guess in my years as her patient she didn’t have a shelf of objects in her room so had never really seen me handle them. But here I was with a rubber thingy in my fingers upon which was balances a hollow tube like structure which made a good sound when tapped. I had suddenly declared ‘this is a baby’s bottle’… probably fairly obvious to most given this woman had a toddler, but to me this mysterious structure was something of unchartered territory though it’s likely I’d encountered hundreds of them in my 19 years of life by that time, let alone grown up with one. But that’s visual agnosia for ya (semantic agnosia).

Donna Williams

Daisy seems to be meaning blind so externally explores around her liking to connect people through touch, pressure. If one doesn’t have a level of visual “recall” it would make sense that she explores people and objects in this fashion to get a “reality” other than “seeing” despite her eyes working.

Sensory Perception, Object Blindness (Simlutagnosia)

As a person who grew up with inability to simultaneously process my visual world, leaving me seeing everything bit by bit, context blind, face blind, often also semi object blind, I feel visual perceptual disorders played a significant role in my learning, development and inability to also gain receptive language processing or functional speech until late childhood. But what weight might visual perceptual disorders alone play in the development of someone’s autism?

Donna Williams

When your visual world is so distorted, lacking interpretive meaning and “fragmented” Daisy shows many clever signs of trying to get coherence from the visual world around her she will twiddle, spin and balance objects creating movement for people with an array of visual perceptual disorders objects may be “dead” when there is no movement and/or sound present. She also at times looks out the corner of her eyes using peripheral vision because it is easier to process and percieve rather than central vision which causes the distortion.

Daisy and Paul 2018

The “System of Sensing”

The realm of sensing is the place we have all come from: that world before mind was thought of as ‘me, before body became ‘mine’, that time when we ‘knew’ because we FELT the nature of things, the feel of them- when we sensed. This was before we had learned to interpret and see the world not as it was but through our concepts and ideas of what it was.

Donna Williams

When someone is in the system it often gets confused (because of the external “behaviours” and presentation) as someone who has a “low intellect” I challenge this because if the system is still present that means that the person is taking in the information around them but is “feeling” rather than putting it into other more “interpretive” framework.

Daisy seems to live very much in this system in terms of her interpersonal relationships with her family and friends. She is fun, cheeky, outgoing and shares her Mum’s idiosyncratic personality and mercurial personality.

In the end she is a human being living and loving life. 🙂

Paul Isaacs 2018

 

 


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

Note – This is from a personal perspective

Visual Agnosia Image 2017 

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