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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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Donna Williams’ Autism Fruit Salad – Bridging the Medical and Social Model of Disability

When Donna published “Autism: The Inside Out Approach” in 1996 it was the beginning of a trail-blazing analogy which would look at autism from the factual, compassionate and directional angle.

Looking Outside The Box

It would ditch rhetoric, confirmation bias and group think it would challenge people views (rightly or wrongly) about autism as a singular condition but look at it through the lens as a multi-faceted condition in which the person has their own unique “pieces” which would present differently from person to person.

Setting A Fluid Framework

She quite rightly humanised medical conditions that present themselves as apart of someones autism such as visual perceptual disorders such as faceblindness, simultagnosia and semantic agnosia and expand on the themes of context blindness in pragmatic but emotionally binding way.

Breaking The “Status Quo”

She would advocate for people who had severe apraxia and aphasia as a part of their autism and would need facilitated communication and assisted communication tools. She would advocate for people who struggled with ABA programs which triggered exposure anxiety. She would challenge the status quo of “all people with autism think in pictures” or “all people with autism are logical literal thinkers”. She would advocate for people with health conditions as a part of their autism.

Equalism

She would quite rightfully not tolerate internalisd bigotry within the autism world and would promote a heart warming and expanding message of egalitarianism which in means equality for all which is not just said but put into practice in a person’s daily life.

Let her videos, blogs and books inform you and empower you for in the end what she wanted out of you was to the be the best version of yourself.

Paul Isaacs 2019


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Asperger’s Syndrome & “Classic” Autism – Left Brain Autism & Right Brain Autism “Fruit Salads”

The late Polly Samuel’s (Donna Williams) through her career had pointed out that firstly autism was adjective a describer of an experience rather than a definer of a person, she also pointed out through her books and blogs that “autism” is different for each person a clustering and multifaceted condition made of different conditions in both neurology  and biology  and contributing psycho-social factors, identity, mental health and environmental factors

Asperger’s Syndrome – Left Brain Autism

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When noting and observing people with Asperger’s Syndrome the part of the brain which is being used to compensate for a disconnect right is the left, people with Asperger’s Syndrome have a condition called social emotional agnosia this means that the person cannot perceive facial expression, body language and tone of voice. Even thought sensory issues may present themselves it would to do with modulation and integration rather than sensory perceptual issues that effect different areas of the brain, faceblindness (prosopagnosia) has a high co-morbidity as well as dyspraxia, alexithymia and literal perception of language. So other words people with AS have to intellectualise in order to compensate for the disconnect in the right.

Characteristics of Right Hemisphere Syndrome: 

– Left visual neglect – an individual may neglect words on the left side of the page or not realize that there are objects on the left side 
– Difficulty with facial recognition 
– Poor awareness of deficits 
– Poor self-monitoring 
– Impulsive behavior
– Poor initiation and motivation 
– Disorientation 
– Impaired attention/memory 
– Difficulty with organization and reasoning/problem – solving 
– Difficulty with social aspects of language (e.g., poor turn taking skills, providing too much information) 
– Difficulty understanding humor 
– Difficulty with word retrieval 

© By Beata Klarowska, M.S. CCC-SLP Monday, July 25, 2011

Classic Autism – Right Brain Autism

When looking at “classic” autism one makes the impression that the person has (and wrongly) a “lower functioning”variant of AS, this could not be further from the truth people with classic  autism tend to to have receptive and expressive aphasia, verbal agnosia, speech/oral apraxia, and a higher rate of visual perceptual disorders such as simultagnosia and semantic agnosia. However introspection is in tact and just look at the poetry and art.

What if my brain injury or stroke is on the LEFT SIDE of my brain?

Injury to the left side of the brain may result in right-sided weakness and the following communication problems:

  • Receptive Language: Problems with understanding spoken or written language (listening and reading)
  • Expressive Language: Problems with expressing spoken or written language
  • Apraxia of Speech: Problems with programming and coordinating the motor movements for speaking
  • Dysarthria: Aspects of the speech system is impacted, which may result in slurred speech or a change in how your voice sounds
  • Computation: Problems with number and math skills
  • Analyzing: Problems with solving complex problems

© 2016 CONSTANT THERAPY

Right Brain Left Brain Autism Fruit Salads Image 2017

Differences between Aspergers and Autism ‘fruit salads’?

 In one of my books, The Jumbled Jigsaw, I presented a range of conditions commonly collectively occurring in those with autism and Aspergers. I was asked about the differences between an Aspergers (AS) ‘fruit salad’ and an Autism ‘fruit salad’As an autism consultant since 1996 and having worked with over 1000 people diagnosed on the autism spectrum there are areas that overlap, areas where similar can easily be mistaken for same, and areas that are commonly quite different. Some with AS can present far more autistically in childhood but function very successfully in adulthood. Some with Autism can have abilities and tendencies commonly found in Aspies and some will grow up to function far more successfully than they could in childhood but, nevertheless, when together with adults with Aspergers they each notice that the differences may commonly outweigh the similarities. Generally the more common differences are:

ASPERGERS
originally called ‘Autistic Psychopathy‘(now outdated)
commonly not diagnosed until mid, even late childhood.
lesser degrees of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
dyspraxia
mood, anxiety, compulsive disorders commonly onset from late childhood/teens/early adulthood as a result of bullying, secondary to social skills problems, secondary to progressive self isolation and lack of interpersonal challenge/involvement/occupation.
scotopic sensitivity/light sensitivity more than simultagnosia
most have social emotional agnosia & around 30% have faceblindness but usually not due to simultagnosia
literal but not meaning deaf
social communication impairments, sometimes selective mutism secondary to Avoidant Personality Disorder (AvPD)
sensory hypersensitivities more than sensory perceptual disorders
higher IQ scores due to less impaired visual-verbal processing
tendency toward Obsessive Compulsive Personality Disorder (OCPD), Schizoid rather than Schizotypal Personality Disorder and commonly Dependent Personality Disorder to some level.
higher tendency to AvPD rather than Exposure Anxiety
Alexithymia is common
ADHD common co-occurance but may be less marked than in those with autism.

AUTISM
Once known as Childhood Psychosis (now outdated)
generally there is always some diagnosis before age 3 (those born before 1980 were still usually diagnosed before age 3, although commonly with now outdated terms like ‘psychotic children’, ‘disturbed’, ‘mentally retarded’, ‘brain damaged’.
higher degrees and severity of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
mood, anxiety, compulsive disorders commonly observed since infancy
commonly amazing balance but commonly hypotonia
simultagnosia/meaning blindness rather than just scotopic sensitivity
verbal agnosia/meaning deafness
verbal communication impairments (aphasia, oral dyspraxia, verbal agnosia and associated echolalia and commonly secondary Selective Mutism)
lower IQ scores associated with higher severity of LD/Dyslexia/agnosias
tendency toward OCD/Tourettes, also higher rate of Schizotypal PD, DPD is common and tends to be more severe
higher tendency to Exposure Anxiety more than AvPD
higher tendency toward dissociative states (dissociation, derealisation, depersonalisation)
poetry by those with autism as opposed to AS commonly indicates those with autism can have high levels of introspection, insight
ADHD extremely common co-occurrence

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

Reflective Conclusion

It is simple people need to start looking at the functioning of the brain and how these different systems work for different people. This will in turn create advocacy which is not only meaningful and beneficial but character building and the correct information will give a broader foundation and palette to work from. I have autism (as opposed to AS) not because I am just “saying it” but because of what part of my brain affected.

What I am not saying (and never will say) is that I am speaking for all that would be disservice to many people’s realities. I am fully aware that this may challenge people me saying there are differences however looking at the neurology behind it and Polly’s observations I think there is room for healthy discussion.

Paul Isaacs 2019


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Asperger’s Syndrome and Autism? – Doing vs. Being?

When we some people look at Asperger’s Syndrome and Autism it can be used interchangeably as the “same thing” but a “different presentation” between the two. If we look a little (or a lot) deeper you can actually find that the differences lie in brain hemisphere dominance and neglect and all that comes with it.

Autistic’

Reliant on the mapping of pattern/theme/feel known as ’Sensing’, with intermittent use
of interpretative processing at the level of the literal
Mono tracked processing with moderate to severe information processing delay.
Indirectly Confrontational, self in relation to self

The struggle here is the use of switching between “being” and “doing” states this means that the person is going from a “sensing” state to an interpretive state.

Asperger’s’

Interpretative processing at the level of the literal intermittent processing
beyond the literal to the ’significant’,
Generally Mono tracked processing with mild information processing delay

Those with Exposure Anxiety are indirectly-confrontational and self in relation to
self. Others are able to manage directly confrontational other-initiated social
interaction but generally lack a simultaneous sense of self and other

The struggle here is the opposite the use switching between “doing” and “being” this means that although the person gets a level of “significance”  they may get “stuck” in a state of over thinking.

Exposure Anxiety is one of the three faces of “Autism”
Notes from a presentation by Donna Williams
At Flinders University, Friday Jan 16th 2004

Autism Doesn’t Run On”One” System

There is not one “system” in autism and that is part of the larger issue, by promoting tired stereotypes and linear 2D presentations of “collective autism” in which the person is assumed to think, act, react and behave in the same manner is rather passe and potentially dangerous.

Looking deeper, being objective and opened minded to the varying presentations that both “Autism” and “Asperger” fruit salads supply as an adjective and a description can lead down to meaningful roads of empowerment.

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Paul Isaacs 2019


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Left Hemisphere, Right Hemisphere & The “Mechanics” Of Autism “Fruit Salads”

 

Autism and Aspergers Hemishpere Image

When looking at autism “fruit salads” and function of both brain hemispheres it is interesting look at the difficulties in each area.

Looking at Donna Williams’ work on the subject of the differences between “Aspie” and “Autie” fruit salads was to do with hemisphere dominance and neglect a trade off between on or the other with “Aspinauts” being the “grey area” of in-between.

On a personal note I always thought she was on to something and looking at this simple table backs it up, consultancy observations, personal experiences and tireless effort to give people a better understanding of both DISablity and disABILITY with autism.

http://brain.web-us.com/brain/LRBrain.html

Left Right Brain Functions Aspergers Autism Image 2018

Right Hemisphere (Asperger’s) “Fruit Salad”

Extralinguistic Deficits

Again, RHD patients are unlikely to display the kinds of phonological, syntactic or semantic problems associated with aphasia. However, although they do not typically have many specific language problems, they definitely have difficulty communicating. This impairment seems to follow from an inability to integrate information; RHD patients apparently do not make adequate use of context in their interpretations of linguistic or nonlinguistic messages. They have difficulty distinguishing significant from unimportant information. For example a patient of mine when asked to describe the “Cookie Theft” picture card from the Boston focused on irrelevant features without describing the overall picture. Some aphasics with typical left hemisphere lesions present with executive function disturbance similar to right hemisphere syndrome.

Literal Interpretations

RHD patients may be able to comprehend only the literal meaning of language. Thus, they will often fail to understand many jokes, metaphors, irony, sarcasm, and common sayings that include figurative language. For example, if an RHD patient hears someone say that they are about to “hit the ceiling,” he might assume that the person is really about to begin striking the ceiling. Such a patient may also have trouble understanding indirect requests. For example, if he is asked if he “could open the window,” he may fail to identify this as a polite request and simply answer “yes” rather than opening the window.

These problems with figurative language may be viewed as one manifestation of the inability to base interpretations on context.

Difficulty identifying relevant information

When listening to a conversation or reading, an RHD patient may fail to abstract the main point contained in the information being shared. This happens in spite of the fact that, unlike an aphasic, the patient can understand all the individual words and grammatical structures used. For RHD patients, it appears that their comprehension of everyday language is impaired by a failure to distinguish important information from irrelevant detail and also by an inability to integrate According to Blake 2007, RH patients have difficulty comprehending non-literal language, humor, and multiple interpretations Furthermore, Blake says that their difficulty with language production includes: impulsivity, inefficiency, and egocentricity. She also says that the same problems are seen in traumatic brain injury.

Inability to interpret body language and facial expressions

In a conversation, RHD may miss out on important cues that should tell them about the emotional state and true intention of the person with whom they are interacting. This inability to interpret body language and facial expression may be related to an overall failure to use context in the interpretation of individual pieces of information. Problems with the interpretation of facial expression may also be due to the fact that RHD patients often fail to maintain eye contact with their conversation partners.

Flat affect

RHD patients may fail to display a wide range of facial expressions themselves. Also their speech is frequently aprosodic, or lacking variations in pitch and stress. Some patients will sound “robot-like,” and thus be unable to express emotion or changes in meaning via changes in intonation. These patients will no longer be able to vary pitch to signal the difference between a question and a statement or use word stress changes within a sentence to signal a difference in meaning.

Problems with Conversational Rules

RHD patients may fail to follow conversational rules, including those governing turn-taking, the initiation and closure of a conversation. RHD patients may tend to dominate conversations, as they are frequently verbose. They may also fail to properly estimate levels of shared knowledge, failing to give the listener enough background information to understand their statements. According to Myers and Mackisack (1990), RHD patients appear to not care about the needs of the listener. They, like children in an early developmental phase, may assume too much knowledge on the part of the listener; or not enough. They appear to answer without adequate search for the right answer. They also may fail to pick up on non verbal cues that signal listener’s reactions.

Impulsivity

RHD patients may exhibit poor judgment and problem solving abilities. They may require constant supervision due to a tendency to attempt tasks of which they are no longer physically capable. This may be related to anosognosia. They may also exhibit impulsivity in the sense of failing to censor the statements they make to other people.

Confabulation

RHD patients may make untrue statements. These do not usually seem to be deliberate lies. According to Brownwell et al. (1995), this may be the patient’s way of responding to his own confusion rather than attempts to mislead the listener

The Neuroscience on the Web Series:
CMSD 636 Neuropathologies of Language and Cognition

CSU, Chico, Patrick McCaffrey, Ph.D.

There tends to be a lower level of visual-verbal processing difficulties in this profile, social emotional agnosia, alexithymia, issues around a shared “sense” of social, self and other. Internal mentalising (to gain meaning)  would make sense.

Left Hemisphere (Autism)  “Fruit Salad”
  • Sensory disturbances, weakness or paralysis on the right side of the body. Read more.
  • Impaired vision on the right hand side of both eyes. (hemianopia)
  • Speech and language problems (aphasia).
  • Difficulties in recognizing objects (agnosia).
  • Problems with daily activities, routines that used to go well (apraxia).
  • Reduced memory for verbal (spoken) matters.
  • Decrease in analytical skills.
  • Problems with chronology (in order of time, cause and effect)
  • Reduced timing and speed of skills
  • Confusing left and right
  • Difficulty in dealing with numbers, understand numbers and dealing with money
  • Become slow
  • Exhibit insecure, anxious and withdrawn behavior
  • Risk of depression
  • Chance of changing moodseasily overwhelmed by emotions

© 2014 – 2018 Braininjury-explanation.com Foundation

There seems to be a higher level of visual-verbal processing difficulties, language processing disorder, sensory perceptual agnosias, problem with a sense of “self” and other.  External mentalising (to gain meaning) would make sense.

Paul Isaacs 2018


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Autism & Identity

I have never seen all of my being as autistic because the word is an adjective a describing word of an experience.

Current Experiences

I experience face blindness, object blindness and meaning blindnessas I do a language processing disorder, hemiplegia, body agnosias and associated learning difficulties.

Past-Tense Experiences

There are also experiences in the past tense such as over coming oral apraxia, high levels of exposure anxiety, selective mutism and gaining functional speech although it was a long road to doing so.

Personality Types

I have personality types such as Mercurial, Idiosyncratic, Self-Sacrificing and Serious (all human beings have personality types of varying types).

Conclusion

Autism is not ALL it is PART OF I see myself as a person a patchwork quilt made of many things. Autism just “is” I am neither proud nor ashamed. I seek balance not objectification. 😊

Paul Isaacs 2019


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Autism, Hemiplegia, Body Agnosias and Textured Insoles

Note this is from a personal perspective
Hemiplegia in Children

I have written in previous blogs about my challenges in the area of hemiplegia which was due to brain injury I had due to complications birth and body disconnection this has meant complications in the area of gait (movement and locomotion), pressure and depth.

Symptoms to Look Out For

Keep in mind that symptoms will vary according to each child. While some children may exhibit all symptoms, others may only exhibit a few. The common symptoms associated with hemiparetic and hemiplegic CP consist of:
Using only one hand while playing, typically surfacing before the age of three
Constantly keeping one hand balled into a fist
Unusually long delay in reaching developmental milestones
Extreme stiffness and/or muscle weakness on one side of the body
Balance and walking problems

Copyright Causes of Hemiparetic or Hemiplegic Cerebral Palsy

Body Disconnection and Low Muscle Tone

Body disconnection has had an impact on my gait also in you think about not being about to perceive the pressure points of movement (toe and heel pressure), direction of legs and knee placement as well as having poor core muscle strength which is my case I feel was to do with being premature and having mild hypermobility/low muscle tone which may have also contributed to my problems with expressive language.

Insoles and Conclusion

Phoebe Caldwell contacted me sometime ago with regards to trying out some insoles which are supplied by a company called Revs Lights and here is my feedback from my experiences of them.

  • Increased input in perceptual awareness of my “feet”.
  • Increased awareness of the pressure needed which had a positive impact on locomotion.
  • Feelings of fatigue have improved due to improve perceptual input and correcting of gait formation and locomotion.
  • Information processing “blockage” has been freed allowing and freeing up space more
  • I feeling of “coherence” and overall grounding improving mood and anxiety disorders

Paul Isaacs 2019