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
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.
Mr. Isaacs was unable to attend today as he is a shift worker and since accordingly this date he has been changed to day work. My initial impression of Paul was of a much younger lad (he is eleven in May) physically and psychologically.
Paul was eager to explain his concerns to me and at times was very insistent on not letting his mother give a more comprehensible explanation of the situations that had occurred.
Paul’s major sense of unhappiness and the reason for his referral is that he feels he is verbally bullied at school. he gave examples of being taunted primarily about 1.) The way walks. 2.) Shuffling his feet. 3.) He wears glasses – and he has been called “four eyes”. However, he feels that the teaching staff are against him . In year 4 he had an unhappy relationship with his form teacher. It does seem one particular occasion he was humiliated – but to the infants so they could show him how to behave.
Mrs Isaacs also incited another incident which seemed to have upset her more than Paul. It became apparent that when Paul was explaining his situation at school his explanations tented to be repetitions of his parents points of view.
Paul after became muddled and it seemed there gaps in connecting and associating. It was also significant that when Paul referred to “she!”- his pronunciation was really that of “he” – I did check several times, but it appears that both Paul and his mother were unaware of this – which was marked. (receptive hearing problem? speech difficulties?).
Mrs Isaacs pointed out that Paul always had difficulties “concentrating” and settling down to work – she remembers this as steaming as far back as three year of age – When he attended play-group. she also recalls at this age and ever since that has had problems with “interacting with others” (her words). Paul has not many friends and it was brought to Mrs Isaacs’ attention by the teaching staff that he was a “solitary figure” in the playground. His mother also pointed out that they lived close of approx ten houses and that there were other children of Paul’s age, but he tended to say in.
Her explanation for this was that he felt safe and secure behind closed doors. Paul did mention some of his friends, but found it hard to articulate what he felt about his friendships with them. He did admit to hitting out at people at times is was significant that he mentioned his father hit him when he was angry. Mrs Isaacs denied this. Paul’s response was “I suppose Mum must embarrassed that I said that.”
Paul’s self-perception is that his “fairly sensible” , however he admits to being influenced by others into “being silly”, but he feels other children are being “sillier” the than him – “going over the top”. He feels he doesn’t go over “the top”. Paul has recently had to go back to the very basics in Maths with one other pupil. Mrs Isaacs conveyed concern and irritation that the teaching staff had not picked up on Paul’s severe difficulties with Maths; especially in view of him starting upper school at Lord Williams East in the new academic year (Sept 1997). Paul’s reading age is estimated as that of a nine year old. it appears the only positive subject that could of was Paul’ art. Mrs Isaacs believes and feels the teaching staff convey negative messages surround Paul’s overall performance. Mrs Isaacs explained that Paul gets very “worked up” over homework assignments, Paul also stated that he cries very easily hence his vulnerability at school in being bullied. It appears Paul suffers from anticipatory anxiety and expressed his fear of commencing upper school as he has heard he will get “beaten up”. Is is of significance that Mrs Isaacs was unhappy at ‘Long Crendon Primary School’ and suffered “bullying” at ‘Lord Williams’ East’. Mr Isaacs is also being scapegoated at work – he is being ‘verbally bullied’ (Mrs Isaacs’ words) and harassed and feels under a lot of pressure.
Family History
When referring to the history of the pregnancy Mrs Isaacs requested to speak separately – she explained she told no one of the pregnancy – only her partner (whom she is married to). She had been rushed into the JR as Paul “was distressed” – he was a month premature and was in SBCU post birth. She was unable to breast -feed Paul remarking they had said “she was too big”. Transition to weening had been unproblematic. Had been slow in walking – 18 months? He was sleepy baby and had to be woken up for feeds – He had been a “good baby”. However Mrs Isaacs had fond toddlerhood difficult – his “boisterousness”. Paul has had three operations 1.) Circumcision at 2 years 2.) Grommets 3.) Adenoidectomy at 4 years – at the JR and Radcliffe. Tonsillitis – query – Tonsillectomy otherwise healthy. Mother with Paul for all operations – no significant complications
Paul would like help with “the teasing” – he said it although it had been easier recently he wants to be able to cope with it better if it worsens again. He also says he is very sensitive and works himself into a state easily. There is also much anticipatory anxiety regarding this move to Lord Williams’ East in the Autumn. In ascertaining his mood he expresses no helplessness or hopeless feeling and denies suicidal ideation or such thoughts. He does covey and sense of confusion and bewilderment over the treating of staff’s “rude words” (his words) about his self-presentation. (percistanty anxiety).
Assessment from Psychologist (educational?) to check ot cognitive abilities and overall school performance.
Social skills group at “The Park Hospital for Children”. (mother drives) for interaction with class.
Possible Family Therapy – concerns regarding Paul;s parents and levels of depression. Re-enactment of mother’s unhappy school experience and father’s “bullying” at his workplace, especially regarding “authority figures”
There was a massive transition in 1993/1994 prior to this interaction before this I was echolalic, meaning deaf to large degree and unable to speak in a fluid manner. Having visual agnosias, oral apraxia and challenges around receptive language meant that getting an interpretive and expressive framework was slow, stilted and lengthy. I went through bouts of selective mutism hating my “connected” voice which then in turn triggered exposure anxiety.
there appeared to be a gap in connecting and association.
Still have complex visual and verbal blockages meant that my “cognitive abilities” were hidden and therefore not “seen” I have no doubt that the lady in question had her own frame of reference on how I was processing the information so thinking I was “retarded” was just the tip of the processing iceberg.
‘Bursting into tears quickly’ – Alexithymia, Body Agnosias and Trauma
There are many overlapping reasons why this was happening at this point – the reason in which I was at this assessment was the persistent verbal bullying from a senior member of staff at the primary school I attended. Having body agnosias meant that I couldn’t gauge or manage my own emotional states this would be related to alexithymia the inability to “know” your own states of emotion, the ability to “internalise” them and mentalise them on a “conscious” level however manner years later when I wrote my first book I came to realise that on a “unconscious” all my experiences were unlocked through typing.
(receptive hearing problem? speech difficulties?)
I was traumed from an early age by expressive language (but at times would be intermittently intrigued) due to a language processing disorder (aphasia), I was triggered by exposure anxiety, dissociated easily and would struggle to get incoming information with “meaning” living in the world of the system of “sensing” before awareness mind and the ability to make interpretive connections.
Battling Books & Formulas & Artism
He has severe difficulties in maths.
His reading age has been estimated at an average age of nine.
Not being able to mentalise in a visual – verbal way meant that I had challenges around comprehension and getting meaning from books, written words and maths. (dyslexia, dyscalculia and visual-verbal agnosias) found the process of writing very difficult the way in which I held the pencil, the ability to concentrate on letter and sentence formation. The same goes for maths.
My solace for extraction and distraction was art which was were my mind was freed and felt “at home” I started from a very young around 5 smearing paint on to a piece of paper and I was hooked from that point on then transitioning to drawing by route during this period of my development.
Prematurity & Height
“There is some evidence that babies who were born premature tend to be shorter in childhood, but they usually catch up with those born at term in late adolescence. But our study shows that women who were born very preterm fail to reach the stature you’d expect based on their parents’ and siblings’ heights.”12 Dec 2016
She noted that developmentally and that I seemed “younger” than my age from a psychological and psychical perspective there is a link between having a short stature and prematurity currently I am only about 5’8′ I do not think I will be growing vertically anytime soon.
Did I Have An Attachment Disorder?
I can assure you I was lucky that my parents gave me love, support and grounding even though they didn’t know that I was on the autism spectrum. Did they both have difficult childhoods and upbrings? Yes they did for many different reasons.
My Father had parents his whom were his primary caregivers who didn’t not show him love, affection, boundaries or a sense of meaningful inclusion both of the parents were cold and aloof and didn’t seem to understand (be it wanting or otherwise) the serious practicalities of what parenthood meant for a child’s development and emotional wellbeing.
My Mother was seen as a disappointment to her Mother who was constantly comparing my Mum to other people explaining that she needed to be more like other people as opposed to building up her own sense of self and identity, self-worth and autonomy.
The truth is I am and try to be a objective judge of character when it’s presented to me and the answer is no I did not have a attachment disorder and my parents were not to blame for anything.
My Mother fits the solitary, serious and self-sacrificing personality types she is giving, emotionally connective and generous.
My Dad fits the conscientious, mercurial and adventurous personality types he is assertive, pragmatic and forthright.
I love and value them as human beings because despite their own “shit” they didn’t fling it consciously or otherwise on to me.
My Nan has been diagnosed with Paraphrenia a form of late onset schizophrenia that effects 0.1 percent of the elderly. This is secondary to an atypical form of grief.
She has had auditory hallucinations for 2 years along with complex visual hallucinations the most recent episode was in the morning seeing flames all around her. Others she has experienced with people, animals, objects.
She has experienced psychosis and delusional thinking it is clear from my views of this states that she is very scared, confused during the lead to these events and afterwards she quite rightly views them as ego-dystonic (separate and in conflict with “self”).
Gender conforms nothing to me since my teens I knew I was effeminate and what sort of bigitory around chasms of narrow passed down thoughts that being “feminine” is some how the negative “ying” to the positive “yang” of being “a man” in the context of denying your own weeping tear ducts and inner feeling states.
I am probably more happy now that I can have a matured head on my shoulders that I can take the assured nature of experience and use it now.
Once I was told why don’t you go to school reunion’s? Having thought about this answer and the infinite amount of timely words I could plunder on this subject. I figured it would best to say never go back to the person you used to be you will only get lost again.
People change for all sorts of reason’s and those people who knew me time is about being the best version of yourself.
For those who bullied me who clad it with denial or detachment or the “phase of being a teenager” you probably needed a hug and listening ear more than I ever did.
A lady last night asked me about what made me have the ability to speak in an interpretation language in late infancy. Of course this is my own trajectory many other factors with information processing have to be taken into account.
Autism Stereotypes: Ditch Them
There is no such thing as “pure autism” so their are many differing roads to Rome. Being brain damaged at birth due hypoxia meant I have challenges around visual perception faceblindness, object blindness and meaning blindness and hemiplegia.
Language Processing
Language processing disorder meant I was meaning deaf so with having visual, language and auditory pathways blocked I found other ways to map the world around me in a kinesthetic manner using my hands, feet as my “eyes” and “ears”.
Oral Apraxia & Body Agnosias
Having oral apraxia and body disconnection meant even I found the words they would fly away in an ethereal and ghostly fashion.
A World Before Meaning & Interpretative Frameworks
When I was echolalic my language was more streamlined and fluid when I explored the aspect of interpretative language it was stilted, slow and mechanical this was an transitional point from pattern, themed and felt language to a more universal interpretative framework.
Exposure Anxiety
Exposure Anxiety was triggered and I disliked my “interpretative voice” and what it triggered every time others made my aware of myself leading to selective mutism.
A lot challenges I have have been overcome others are more residual in there presentation.
