Paul Isaacs' Blog

Autism from the inside


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Autism, Alexithymia, Dissociative Disorders & Trauma

Image may contain: Paul Isaacs, child and closeup

Note – This is from a personal perspective

Overview

In secondary school their was an isolated incident of sexual abuse which I was subjected to, this happened in the changing rooms and I have documented about how I had to get closure on this incident myself.

Alexithymia and dissociative reactions are two strategies that have been put forward as coping mechanisms to alleviate painful emotions. Adult studies reveal an association between alexithymia and dissociation. In line with the coping hypothesis, it was predicted that the relationship between alexithymia and dissociative tendencies would be partly mediated by current levels of stress and past traumatic experiences. Dissociation may also be related to enhanced fantasizing, although alexithymia has traditionally been associated with an incapacity to fantasize

Jennifer G. Schnellmann PhD, ELS 2005

Alexithymia has a common overlap with some people on the autism spectrum, in which the person has problems identifying, wording and extracting inner emotional states, having a language processing disorder no doubt hindered my ability to express (word finding and word losing), visual agnosias of varying kinds and degrees which hindered my to get gestalt perception and mentalise and thus extract the information and process it accordingly.

But imagine that as an autie you get tolerated in a mainstream school of bullying, exclusion etc…. so you try your butt off to pass as ‘non autistic’ or at least mirror others…. but on your own out comes your autie self… and over YEARS the ‘acting normal’ self becomes an ‘alter’ and has its own abilities, its preferences, its dislikes, the things its invested in, the things its disinterested in (like all the ‘autistic’ stuff… because it would attract more bullying, exclusion, etc)….

Donna Williams 2012

Dissociation Disorder & Repressed Memories

Coming to terms with my dissociation is to understand where it came from so here is the a list of events that interacted and caused dissociation and dissociative personas which then in tern effect the association of the “core self” which then in turn had an impact on my psychological and emotional development.

  • I was traumatised by children and teachers using functional speech and language at primary school because I could not keep up with it on an interpretive level (this wasn’t done on purpose nor was this anyone’s fault or intention).
  • I was put into adult situations at primary school with no advocate or caregiver present (teachers arranging meetings about “negative” behaviour prior and after functional speech so dissociation, personas and exposure anxiety were triggered).
  • Having body and pain agnosias meant without clothes on and/or pressure points meant I could detach and dissociate quicker.
  • Having prosopagnosia secondary to simultagnosia meant I bonded with the “person in the mirror” in toilets and washrooms.
  • Secondary school involved the use of three personas all with splintering personality types, learning and communication styles and “tasks” both motivational and/or otherwise to “protect” on a subconscious level the “core self”.
  • Only became self aware of being “different” at 16 and later was using word “autism/autistic” at 18, however lacked a self-awareness of my challenges to others and didn’t consciously change and/or suffer from avoidant and/or social anxiety/phobia.
  • PTSD in adulthood and repressed memories of sexual abuse came in later adulthood through nightmares and flashbacks in a distorted and fragmented fashion due to visual perceptual and language processing disorders.
  • Outlets for Alexithymia and emotional regulation came up more prominently in adulthood through art, poetry and creative writing and aided my ability to mentalise.
  • Being Mercurial and Idiosyncratic meant I could create novel, inventive and “odd” ways of distancing myself from emotional difficulties and pain.
  • Being in the “system of sensing” for far longer and still retaining aspects of it meant I valued the world and would sense the energies around me beyond their set interpretive “meaning”.

Accepting What “Brought me to the Dance”

I have no doubt that I have been coloured by my experiences, they mold people, influence, guide them, help them and sadly sometimes destroy them.

I have come to realise the value in experiences regardless of these being positive or negative I still learn from them.

They’re my teachers my reflectors and I refuse to live a half life in which my destiny is to be defined by things that were out of my control and contextual to the knowledge (or lack of) at the time.

Paul Isaacs 2020


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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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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 internalised bigotry within the autism world and would promote a heart warming and expanding message of egalitarianism in which 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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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