Paul Isaacs' Blog

Autism from the inside


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Autism, Alexithymia, Dissociative Disorders & Trauma

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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


In The Last Ten Years

Looking Back

The last ten years have been very intersting in 2009 I was recently out of the Mental Health Services with two personality disorders, auditory hallucinations and psychosis, I was self harming and attempted suicide.

Early Infancy

By clinical observations I was serverely autistic, I was profoundly meaning deaf, meaning blind, body disconnected, oral apraxic and didn’t gain functional speech till later in infancy. I was and am thankful to my parents who had no means of any interventions (in the late 80s many were dated).

In 2010 I was diagnosed with autism and OCD and my speaking career started off in which I went freelance in 2015.

“Standards of Success”

By “non-autistic” standards I “made it” in many ways I suppose. I was considered “retarded” by the village I lived in and was targeted and bullied by the children and adults till my mid-teens.

Education

I was targeted and bullied at school from primary to secondary when I finally left in 2002 (with an isolated incident of sexual abuse) in the latter.

I went on to do an ICT coursecfor a year and had the greatest experience of my life from and educational perspective it proved I could be educated.

Bullying and Employment

The bullying in employment started in 2002/3 so multiple jobs were lost and gained.

I was thankful to the autism base in Chinnor in around 2008/9 for supporting me as well as the start of my speaking career in 2010. Over that period of time I wrote and authored 5 books.

The bullying in employment stopped in 2015 when I went freelance and started working for My World.

This is longest time in employment that I have been safe, comfortable and seen as a part of the team.

I Am A Person-First

People wonder why I use “person-first language” this is why because I do not want to be defined by a “label”. I do not like serperatist “them and us, us and them” rhetoric we (as beings) are all a part of the human race

From 2013 onwards to now I am pleased to have met some of the most wonderful and friendly people in both my personal and professional life.

Love and Life

I lost my Gramp in March 2017 due to metatastic prostate cancer, one of my dearest friends and mentors Polly (Donna Williams) in April that year also to metatastic breast cancer and my Nan in December 2019 due to pneumonia. I shall always cherish my fondest memories of them.

I almost lost my Dad in 2011 due to chronic lymphocytic leukemia and then meningitis in 2018 as well as my Mum in May 2019 due to a complex thrombotic disease.

Creative Mindsets

I have had great fun dabbling in art, poetry and what I call “insta-modelling” in which to my surprise and support from my friends up north has been rather enjoyable!

I have been interested in androgyny for many years prior and have been told I look as such.

One of things I can do well is pluck my eyebrows which I consider an achievement as much as anything else! 😉

Conclusion

So look beyond what is here, look beyond what is heard, what is seen, what is touched and sense people because every cherished little person is special and of equal valor and humility in this world.

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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A Lesson in Time – Mental Health Assessment Pre-Diagnosis

Paul 7 Years Old

Family Assessment

Tuesday 11th February 1997

Presenting Problems

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 he 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 stemming 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. (persistent anxiety).

  1. Assessment from Psychologist (educational?) to check on cognitive abilities and overall school performance.

  2. Social skills group at “The Park Hospital for Children”. (mother drives) for interaction with class.

  3. 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”

Cognitive Abilities , Cognitive Impairment & “Mental Retardation”

“It became noticeable he had very slow speech”

There was a massive transition in 1993/1994 prior to this interaction before this I was echolalic, meaning deaf to large degree around 80 to 90 percent 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 and hating my “connected” voice which then in turn triggered exposure anxiety.

there appeared to be a gap in connecting and association.

Still having 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 and verbal bullying from a senior member of staff at the primary school which 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 many years later when I wrote my first book I came to realise that on a “unconscious level” all my experiences were unlocked through typing.

(receptive hearing problem? speech difficulties?)

I was traumatised 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). I found the process of writing very difficult the way in which I held the pencil, the ability to concentrate on each 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 upbringings? 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 his parents were cold and aloof and didn’t seem to understand (be it wanting or otherwise) the serious practicalities of what parenthood meant for in a child’s development and emotional well-being.

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 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 an 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 Father 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.

Paul Isaacs 2019


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Autism, Meaning Blindness and The Phantom Rainbow Flask

Related image

Note This was from a personal perspective

There are times when I even question my own perception visual and/or otherwise and got the the point wonder of how I cam to this conclusion.

Noticing An Object With No Context? 

I was presenting a workshop around a week ago and in the room something every so often was catching my eye and intriguing me, its was shiny and rainbow coloured in presentation however I ignored for a while.

Interpretive Meaning vs. Non-Interpretive Experience? 

I was then talking about experiences of being object blind (simultagnosia) and meaning blind (semantic agnosia) and turned the the object of intrigue and held it and proclaimed and questioned  “what is this?” in about 5 seconds or more the audience explained that it was a hip flask!

It just goes to show that even on a residual level my visual perceptual challenges take me by surprise this were I made an effort to remember the object by touching the its smooth and bobbled surface.

Paul Isaacs 2019