Paul Isaacs' Blog

Autism from the inside


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A Tall Tail Of Somotisation Disorder

The Beginning

I started getting symptoms of this in late infancy around 11 years old this was related to mitigating factors both to do with neurological processing such as aphasia, alexithymia and visual agnosias, environmental factors bullying and emotional triggering.

Psycho-Somatic Trauma Based Response to Negative Environment Experiences?

I would get sensations of my body “melting”, headaches, stomachaches, tingling in limbs, face and lips and by the time secondary school came and chronic bullying persisted in the first two weeks the pain would start again as stated above.

In particular, the pattern of shrinking was observed in two parts of the brain called the putamen and the caudate, a change oddly reminiscent of adults who have experienced early life stress, such as childhood maltreatment.

These sensations would cause me to have intestinal discomfort ranging from chronic constipation to nausea.

I would go to the school reception during lunch break sometimes on a almost daily basis saying either about a stomachache and/or headache. I would sit in floods of tears wanting to go home this went on for approximately 18 months as my nervous system was also being pushed as panic attacks usually followed before and/or after an episode of pain.

This meant that obsessive-compulsive disorder manifested in persistent hand-washing, counting, checking and reassurance around illness and disease began which last from the ages of 12 to 15.

Psychological Pain Presenting as Physical Pain?

What is Somatic Symptom Disorder

People with somatic symptom disorder experience real physical symptoms — they are not imagined. These symptoms can vary in intensity from mild to severe and often include breathlessness, exhaustion, or weakness, though pain is the most commonly reported symptom. Doctors may be unable to pinpoint a medical reason, or there may be a clear and diagnosable medical cause. However, people with somatic symptom disorder are likely to experience the symptoms of their illness more severely than is common.

 

Fast forward to this year and very recently I woke up in tremendous pain it started with an “itching” sensation in my lower arms and legs, then they felt like they were on fire, I got up and moved my legs persistently for 40 mins trying to “release” the sensation

I went to the GP this week who confirmed somatisation disorder secondary to an anxiety disorder, PTSD, depression and hypercondriasis which makes sense.

Pain would be triggered by talking about illness in any context,so for example people on the bus sat behind me and in the GP waiting room for example the described pain would migrate and move from my lower back, to my upper back from upper limbs to my lower limbs my body would begin to shake and adrenaline fired through my body, my stomach muscles would cramp up and it would gurgle.

I went for a walk two nights ago and my feet went “numb” this caused great distress and panic as I walked home however bursting into tears was a great release for me.

Conclusion

Now most of pain has subsided but what does psycho-somatic pain represent? For me I feel it is unprocessed emotions, recent environmental distress and need for my body and brain to calm down.

Paul Isaacs 2019


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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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Androgyny & Male Feminity

Gender conforms nothing to me since my teens I knew I was effeminate and what sort of bigotry 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.

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 & 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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What Are “You”?

I often teeter on the wonderance of what it means to be a brain with a nervous system?

Why I am here? Why I am attuned and attached to an aging body? Why do I think, act, behave and react the way I do?

People are sometimes scared of their own minds and thought processes seeing them as a darkly moulded appendage that is seperate from one’s self an inner coil of contradictory truths.

As I know at this point I couldn’t be more happier being my own best friend, ally and comfort in times of earthly solace to do the right things. I hold in to truths even metaphorical ones and friends of friends a like flow into our pathly existences once again.

Paul Isaacs 2019


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Be The Best Version Of Yourself

In a sometimes mind boggling world of shallow, narrow cucumber minded folk. Remember to be the person you want to be, when you close your eyes, wake up, make breakfast and go to work.

Short and timely travels within a flesh vessel of chemicals, minerals, fluids and too many a complication to bubble upon the cooking fat of existence.

I do no t adhere to clubs of a singular mentality for sometimes a heard can lead the blinkered people towards darkly paths of anxiety and self recriminations.

So I say crumble the falsehoods of separation, for they create longer bridges of acceptance to cross, know you are one person with the ability of helpfulness to share love upon everyone.

Paul Isaacs 2019