Paul Isaacs' Blog

Autism from the inside


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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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Paul Isaacs: Living Through the Haze 2nd Edition Review By Dr. Manuel Casanova 

 

Paul Isaacs’ book, “Living Through the Haze”, has been published (second edition). The book has new content, a new introduction and an afterword that I wrote. Paul was diagnosed as autistic in 2010. As a child Paul was considered to be a “naughty child” with no prospects for a future. At present Paul is a lecturer, trainer and consultant who promotes autism awareness throughout the UK. In the following paragraphs I provide the afterword that I wrote for “Living Through the Haze”:

Many times during his life Paul felt confused and detached from his surroundings. His attention could only focus on one aspect of his sensory experience. He lived his life as if wearing blinders, and as such, he could not react adequately to what people asked of him at home, at school or at work. His perceptual style made him seem odd to his peers. Parents, teachers and peers objectivised and bullied him.  In the end the reader can only wonder, how did Paul survive?

For many autistic individuals the environment overwhelms their nervous system with information.  Seeing a face is like looking at the sun. Blinking, when looking at the sun, is a response aimed at avoiding damage to your eyes by allowing only a sliver of sunrays to hit your retina. In autistic individuals, allowing only a sliver of available information into your brain is meant to protect it from overstimulation. Overall, autistic individuals can’t see the forest for the trees and it is easy for them to become thoroughly engrossed in the details of a particular situation but miss the larger picture.

Paul grew up displaying many of the classical symptoms of autism. Unfortunately, as is the case for many autistic individuals, his diagnosis came late in life.  Still, he prospered and found fulfillment in being a speaker, counselor and in helping others like him. In this book Paul publicizes his own plight with some of the darker aspects of autism. Through no fault of his own Paul was misunderstood and relentlessly bullied by even those who were supposed to protect him.  The psychological and physical aggression that he suffered is at the crux of a mixed mood disorder that at times has greatly handicapped him.

So we can ask again, how did Paul survive? In a longitudinal study sponsored by the NIMH on so-called recovered autism, it seems that the most salient commonality for those that “recovered” was caring parents who were quick to act on behalf of their children.  Paul in this regard was blessed with caring supportive parents and grandparents. He also found solace and purpose in a special education camp outside of school, which he called the “Autism Base”. There he found others like him living within a spectrum of severities. More importantly, within the Autism Base he found comradely and a social sense of togetherness.

Paul has not forgotten the painful experiences of the past but has learned from them.  Indeed, the excuses provided by the teachers who failed him are indelibly marked in his memory. He has a keen power for introspection.  His ability to self-reflect is one of the reasons why I believe that there is undue emphasis in the Theory of Mind conceptualization of autism. Paul was always keenly aware of his mental state and on occasion provides privileged access to the mental state of his parents.

This is a must read book for parents with autistic kids, especially if they are attending mainstream schools. The book is also a valuable aid to teachers. It portrays in a no holds barred way the effects of intimidation and the behavioral manifestations of bullying. Finally, Paul provides many constructive comments and guidelines as to how to improve the school system and teaches by example the positives of a supportive role by parents.

Source: Paul Isaacs: Living Through the Haze


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Person First Language – Why It Is Of Value For Me

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Why I am A Person With Autism

Born a person first a little human being

Little “Paul” is what people were seeing

As I grew my personhood shone. so freeing

Something that all people are being.

My Autism is apart of me it doesn’t define the whole

I want be seen as more a noble quest my ultimate goal

Not everything is about my “condition” that takes its toll

Open your eyes ever look deeper into my soul

I am an artist I like to draw – my quirky imagination sores

I am a poet I like to write – my words are given clarity and flight

My speech, vision and language are at times fragmented

But this doesn’t mean I am eternally demented

See the person, their eager smile be with them for but a while

Likes and dislikes, wants and the needs these are but human deeds

I want people with open eyes too see I know that path fills with glee

That it is one’s personhood that connects you and me

Paul Isaacs 2015


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In The Autism World It Is Always Best To Remember You Are A Person

Paul Big LegsI Am Sorry But I Must Say Something

The “culture” I was told that would support me
It doesn’t it has brought me sadness, it has made me shackled
It has not “set me free” I want to live a simple life
Where people are equal for that very reason with strife

Arguments a plunder my heart sinks and my nerves crack like thunder
As I feel my self esteem pulled down into the depths of the under
I ponder to myself what is it all about? Can’t people get along
Not one scream and not one shout, echoes all about

No more I say – I have given it my all I can be the person I was
His name was “Paul” and that is the some of it all
Hold hands and hearts and rejoice for we are not all one voice
But many are unsung, drowned out and ignored not the people’s choice

My heart fills with sunshine when I know that being here is no plight
Real friends and family give me my real joy, no more fights
A family member told me tenderly remember who you are that set me free
An onward path of freedom, hope and reflective clarity

Conclusion 

Thank you to you all I have decided not to over-invest in the autism “culture” or politics anymore. I have stated my opinions and listened to others that is great . My view still is we are all human and can learn from each other and in the context of autism that still applies no one person is the same, no one person can speak for all, but one can talk about their reality and if it helps someone great and if it something you cannot relate too or don’t experiences equally great. 🙂

Paul Isaacs 2015


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The Personhood Club – Remembering I’m A Person First – Identities Come Afterwards

Christmas Dinner Early 2000s

 

“The greatest feeling I get is when I reminded that I am a person and all that entails it is beyond any rigid identity bestowed on me, I belong to no specific club unless you call it the personhood club which has about 7 billion members “

Paul Isaacs 2014


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Part Of A Journey Fulfilled & Will Be Continued

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Thoughts & Reflections

I have been on journey of self discovery since late 2006 now in 2014 two days ago I learnt what may be last and most important part of Autism profile which is on my previous blog post.

Although genetics play a part in Autism It has come to my attention that for some people on the spectrum (not all) have birthing issues that either affect their  brain and/or immune/metabolic systems have in turn an effect on their development and in my case visual and auditory perceptual issues, language processing, body awareness etc. Of course there are other members of the family who have very different profile to me and wonder if my birth issues maybe the answers to that? I think so. 🙂

Dad and I 2003 Resturant

To Be Balanced

So what have learnt ? That I shall always be a human being, I shall be creative, kind, thankful, balanced and appreciate life for it’s lessons, value true friendships, to be as functional as I can be with the knowledge, not to be scared and keep it real. I’m a person.

I’m thankful to so many people on this journey and I have feeling that reading this post you know who you are. 🙂

Paul Isaacs  2014


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Placental Abruption – Part of My Autism Profile

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Placental Abruption 

This a personal account of these issues, my development and my autism profile.

My mother and I where both in distress during her pregnancy – I was born premature and was born via cesarean section  and my Mother suffered heavy bleeding as a result of what is called placental abruption.

“Placental abruption happens when there is bleeding behind the placenta, between the placenta and the wall of the uterus (womb). This may be just a small amount of bleeding. But if you have a large amount of bleeding, the placenta may partially or completely separate from the lining of your uterus before your baby is born.”

Left Hemisphere Brain Injury & Oxygen Deprivation (Hypoxia) 

“25% of babies who experience hypoxic/anoxic injuries at the time of labor will have permanent neurological problems.”

© 2014 Birth Injury Justice.org by Becker Law Firm, L.P.A. All rights reserved.

Aspects Of My Birth 

My Autism profile consists of many speech, language, perceptual and developmental delays  which includes

  • Speech Delay (non-verbal 5 year approx with speech regression)
  • Motor Coordination Delays (crawled with one arm and didn’t start walking until 18 months old)
  • Language Delay (gained functional speech between the ages 7/8 years is that of a 3 year old developmentally)
  • Learning Difficulties (dyslexia, dyscalculia, dysgraphia)
  • “Mild” Learning Disability
  • Visual Agnosias (simultagnosia, semantic agnosia, prosopagnosia, visual-verbal agnosia)
  • Auditory Agnosias (pure auditory agnosia, verbal auditory agnosia, receptive and expressive aphasia)
  • Body Agnosias (finger agnosia and visual-spatial dysgnosia)
  • Hemispatial Neglect (related to brain injury, left-handedness, left-right confusion related to Gerstmann Syndrome)

Genetics

They also come into play because there are such things as genetic based agnosias, processing issues and learning difficulties which can be passed down from generations to generation (although the fashion in which this is done is highly variable) the cross over with other profiles seems to be there and commonalities are present in some of the conditions such as.

This However Doesn’t Affect My Character or Personhood

Every person is on a journey of self discovery and revelation this doesn’t make me feel sad nor isolated in anyway quite the opposite I’m still “Paul” and all that in entails these aspects of discovery are the trajectory of my development, my learning, my language, my visual processing etc. They are apart of me but don’t ultimately define – I’m still creative, eager to learn, eager to live and with the set of cards I have been dealt I will use them ultimately to the best of my abilities. Hope springs eternal. 🙂

Special Thanks to Donna Williams & Dr Manuel Casanova

Paul Isaacs 2014