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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My World- Autism, Ethos & Humanity

I am pleased an eagerly proud to be working for a small autism organisation called My World and day centre for people on the autism spectrum. This summer it shall be four years of service to which I have contributed my consultancy work.

With people who have a narrow, conceited and reductive view of what autism “is” and how one is supposed to “act” and “behave” noting that it has “one look” so therefore “one approach and intervention” is wrong and that doesn’t happen here.

At My World all the caring and empathic staff are valued, open-minded and willing to learn this means that what is taken is a person-centred approach, looking at the person’s mental health, learning styles, information processing challenges and ultimately sees them as people or equal worth and value going about their day and purcuits.

Our success is our ethos, open-mind natures, ability to learn new things and approaches and empathy which encourages people in the end to be the best version of themselves.

Paul Isaacs 2019


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Autism Interview #8: Paul Isaacs on Personhood and “Autistic Identity”

Jenna GensicMany Thanks to Jenna Gensic for conducting this interview with me and others – please checkout Jenna’s page Learn From Autistics -Connecting Parents and Caregivers with Autistic Voices

Paul Isaacs is an autism advocate, trainer, and public speaker from England. He says that public speaking about his experiences and the experiences of others has helped him find his voice and develop a true skill. He always emphasizes the positive aspects of how life can be lived with autism. He uses the acronym PEC to describe the qualities people who work with autism should have: Positivity, Empathy, and Compassion. He is also a published author and blogs at Autism from the Inside.
In your most recent blog post, you discussed your dislike of the tendency to attribute someone’s neurology to their entire identity or personhood. However, there are many other autistic self-advocates who insist that this premise is important for improving the treatment of people with disabilities. What advice do you have for parents who are trying to help empower their children with the skills and confidence to be successful and are receiving conflicting information from autistic self-advocates in this area?

I would say that being born a human being first should be seen. Every person on this planet is a human being regardless of ability, disability, race and gender. Understanding the “autism” is very person specific, environmentally specific and situational specific – these different “pieces” which make up the autism have their own unique presentation, and also the way in which the person is affected will differ not only due to the “pieces” and their trajectory, but what the “pieces” are in the first place. It is like being a detective, searching out what works and what doesn’t are both equally important.

With regards to my identity, I see myself as a person and a part of humanity, so therefore I am a person first – personally, my autism affects my visual and auditory perception, language processing, cognitive processing, learning difficulties, etc, but these are PART of me, not the totality of my BEING .

I have personality traits (which everybody has regardless of autism or not) which make me happy, silly, draw, sketch, meet up with people, etc. These are human things which I value. I am not ashamed of my autism, but I don’t glamourise it either. I keep a balanced, open-mind. I can only speak for myself (how autism affects me). No one can speak for ALL, so, in that sense, people can learn from different perspectives and realities.

You were diagnosed at a relatively late age even though you exhibited clear signs of autism when you were young. What do you think was the main reason for this delay? Have you seen evidence of this still occurring today or has autism awareness reached new heights such that this sort of situation will likely never happen again?
I was born in 1986 and although there were specialist autism bases around my area, my autism wasn’t picked up due to circumstantial insistences. I was seen by an educational psychologist in 1993 and was seen by a child and adolescent mental health team in 1996 and an adult mental health services in 2007 and 2008 before I was formally diagnosed in 2010.
I would say it was not anybody’s fault as no information was given to my parents during my time in mainstream education. When I was in secondary school (I gained functional speech between the ages of 7/8), there where several meetings with my head, as well as the latter years of primary school. However, there was an autism base at the secondary school, and I would speak with the students and even attend lunchtime meetings and eat with them.
My Mum though I was solely brain damaged due to the placental abruption and lack of oxygen when I was born and that was the only name she had for my “behaviours,” but she had no doubt that I was a person before any of these difficulties.
What are you asked to speak about most often?

Sensory perceptional and language processing seems to be the one I get asked to do; however, on my booking page I have slowly built up other areas and topics.

What mistakes do autism advocates make?

Getting over-invested in the autism “politics” this where “identity” can become in crisis, and mental health can breakdown. I am talking through observations and also experiencing it myself – Donna Williams an advocate, speaker, consultant and author on the spectrum gave me some sage advice, and that is to take a step back, regain healthy boundaries, find yourself and do socially binding things.

Autism politics can get rather unhealthy to be a part of, there can be militancy by people on an off the autism spectrum that can be rather distressing and uncomfortable to be a part of. My personal opinion is that everybody has a story and that their realities are just as valid as anyone else’s – there should not be a single representation, but a more egalitarian outlook where all person hoods and realities are taken into account. It is my opinion that autism isn’t culture, but a “culture” has been created around autism.

Describe some of the factors that have contributed to the personal and professional success you have achieved today.

My parents have helped me a lot over the years on both a personal and professional level – it started with boundaries, right and wrong, having a moral compass, seeing “failure” as normal and therefore accepted, seeing me as “Paul” first, a boy, a teenager, an adult, and letting me experience the outside world and all that it entails.

What are some of the strengths and challenges you’ve experienced as a result of being on the spectrum?

I still have problems with language processing, visual perception (faces, objects, people), visual distortions (foreground, background), under-processing on my right side (motor and visual), sensory integration, movement, processing “self” and “other” – being mono-tracked and seeing the significance of what is being said and what is happening (life skills have helped so much in this area) and learning difficulties.

I don’t know if my strengths are autie-specific. I do enjoy writing poetry, creating abstract artwork, and writing books. I like creating things, watching movies, and I also like alternate fashion.

What advice do you have for parents of autistic children who respect the knowledge and experience of autistic self-advocates and are looking for guidance in helping their children develop their potentials?

Go with the child on their journey. It will be different for each person – see them as your child first, understand the pieces of their “autism,” and work from there. Let the child experience life.

Jenna Gensic & Paul Isaacs 2015


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Paul Isaacs – Local Autism Speaking, Training & Consultancy (Oxfordshire & Buckinghamshire)

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As of August this year (2015) I am doing local work around my the counties of Buckinghamshire & Oxfordshire – in  the roles of autism speeches, training and/or consultancy. I have currently worked in the field of autism for over five years and have written five books on the subject or autism and contributed to various other books and articles too.

Personal Website 

Audience Feedback 

If you live and/or are an organisation, charity, mainstream educational base or school, mental health service, autism based educational schools or any service  within in these counties and are interested in have me speak, train and/or consult please contact me via the information below.

CONTACT DETAILS

staypuft12@yahoo.co.uk 

Paul Isaacs 2015