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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 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 steaming 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. (percistanty anxiety).

  1. Assessment from Psychologist (educational?) to check ot 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 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 hating my “connected” voice which then in turn triggered exposure anxiety.

there appeared to be a gap in connecting and association.

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

(receptive hearing problem? speech difficulties?)

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

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 and 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 a 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 Dad 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” what does it mean?

Note this is froDad and I Dancingm a personal perspective

When I was diagnosed with autism in 2010 one of the first things that I was told is that was still a “person” even if I didn’t the mechanics and/or “pieces” of my autism that nevertheless was a sage piece of advice that has stayed with me on a personal and professional level.

“Autism” is different for each person so here is a breakdown of the “mechanics”

  • Emotional perception (alexithymia) problems with recognising and verbalising emotional states.
  • Visual perception (visual agnosias) problems with perceiving faces, objects, reading words, colour and “sorting out my visual field into a “whole”.
  • Language processing (receptive aphasia) problems with processing and interpreting “meaning” and “significance” from language.
  • Auditory processing (auditory agnosias) problems with organising the origins of sounds.
  • Body perception (body agnosias and hemiplegia) problems with processing and perception on the right side of my body which affects coordination, problems with recognising pain, hunger and thirst.
  • Body and Movement (visuospatial dysgnosia) left-right disorientation.
  • Light Sensitivity (sensory integration disorder and related learning difficulties) problems with light creating distortions as well as dyslexia and dyscalculia.
  • “self” and “other” processing simultaneous information which requires this can be difficult.
  • Mental health and personality disorders.

 

PERSONALITY TYPES

I have four main personality types which intermingle with each these are human in terms of presentation but will differ form person to person – human beings under stress may develop “disordered” versions of these types affecting social and personal perception, mood management and interpersonal relationships and friendships.

  1. Idiosyncratic
  2. Mercurial
  3. Self-Sacrificing
  4. Serious  

 

NOT RELATING TO “AUTISTIC IDENTITY/IDENTITY-FIRST LANGUAGE 

I do not see my whole being as “autism” nor define myself by it. I see it apart of me, in my case the pieces are emotional perception, visual perception, language perception, auditory perception,
body perception, light sensitivity, information processing and learning difficulties
 with associated mood disorders, exposure anxiety, somatisation disorder, dissociation and personality disorders but they are not a total nor finite definition of my being. I can only speak from my perspective and that is all.

I am “Paul” first with the all the positives and negatives that come with it the likes, dislikes, regrets, dreams and the sense of just “being”. I shall never adhere to the “club” there is to much militancy, over-investing and politics. I see myself as apart of the human race – no more, no less, no more worthy, no less worthy just a person like one of the billions of people on the planet everyone has a story to tell don’t they.  😉

Paul Isaacs 2016


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Hemiplegia & Autism

                                                                                                                                                                                                        10338674_881821881831690_7870309102355592004_o

RIGHT SIDE – (LEFT HEMISPHERE INJURY)                                           

HEMIPLEGIA DEFINITION 

Hemiplegia is caused by damage to the brain. The damage can occur before or during birth, which is called congenital hemiplegia. No one knows what causes the damage in these cases.

Hemiplegia can also be acquired. This is caused by damage to the brain, such as a stroke, in childhood.

Sometimes the condition will only become clear as the baby gets older, such as having trouble walking.

An injury to the right side of the brain will cause the left side of the body to be paralysed. An injury to the left side of the brain will cause the right side of the body to be paralysed.

The condition can affect any child, but it is slightly more common in premature babies. It is quite a common condition, affecting one in 1000 births.

LEFT HEMISPHERE BRAIN INJURY & RIGHT SIDE DISCONNECT

A Personal Account

As you can see from the picture above there are visible signs of hemplegia (due to difficult birthing, placental abruption and “silent” stroke within the womb) such as – notice how the mouth is lop-sided and has a stretched appearance as a smile (the side the that is “blind” is not matching) also the eyebrows are not matching either. As a child my Mum thought I was deaf and blind due to sensory perceptual and language processing issues the left side of brain is where language comes from (receptive and expressive) so I have an aphasia as well as visual perceptual disorders, motor cordination, under-processing on my blind side both visual (Homonymous hemianopsia) and motor perception (Hemispatial neglect).

WHAT HELPED?

  • Walking
  • Swimming
  • Bicycling
  • Rough & Tumble Play (as a child)
  • Painting
  • Drawing (sketches, doodles, drawing by route)
  • Practical Living Skills (cooking, cleaning etc)
  • Tinted Lenses

Paul Isaacs 2015


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Being Brain Damaged – Is Apart of my Autism Profile – A Word That Just “is”

Baby Fisted Hands

Baby picture – note fisted/clasped hands and pointed toes signs of brain injury

Note – This is from a personal perspective of how autism affects me and my profile

Brain Damage/Injury

Brain Damaged and/or brain injury is apart of the reason why I have autism and certain “pieces” of it would not have been there but this is due to circumstance and environment the difficult birth, the placental abruption and oxygen deprivation that caused and stoke, left-right disorientation, visual perceptual disorders, language processing disorder (aphasia) and issues with internalising and externalising language and other developmental aspects.

A Human-Being – Everyone is Equal 

I have no problem with seeing this a part of the issues I face nor do I have an issue with the terminology being used in the this world today words sometimes to have to be used as marker and my case this is maker of a clustering of symptoms that I have as a result of brain injury – as I have stated in the title it just “is” and I am fine with this it doesn’t make me feel any more nor any less. I am “Paul” first (and to be honest always will be) everything else pales in the background of significance.

I have been dealt a set cards and I am going to use them to the best of my abilities. I am not a super-human, I am not the next generation of humanity, nor a super-being, I am not technical, logical or literal or “intellectual”. I am afraid I am just a person.

Autism is Person Centred – It isn’t the Complete Definition of the the Person

I would however I say that I am creative (like art, poetry, wordplay, soundplay, textures, patterns, colours and fashion) and idiosyncratic (I play to the own beat) , mercurial (I listen to my emotions) and solitary (I like moments of my own company)   – all the other things are redundant to me in the bigger picture they apart  of me they aren’t me. I am just a person living life and that is really all. People can play with words all they want but sometimes it is better to get real if not for your sake then for others.

Paul Isaacs 2015


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The Root/Trajectory Of Autism Is A Diverse “Fruit Salad”

Brain Lobe 2Right hemisphere Functions

  • numerical computation (exact calculation, numerical comparison, estimation)
  • language: intonation/accentuation, prosody, pragmatic, contextual

OVERVIEW 

If some one has an agnosia (perceptual loss) on this side of the brain this is called Social-Emotional Agnosia (not reading “facial expressions”, tone of and being literal) this tends to fit the profile with people with Asperger’s Syndrome. One is using the the left side of the brain (logic, literal thinking to get meaning).

So the Brain is Using The Left Hemisphere To Decode Information Because Of The Neglect.

RIGHT HEMISPHERE SYNDROME

Left hemisphere Functions

  • numerical computation (exact calculation, numerical comparison, estimation)
  • left hemisphere only: direct fact retrieval
  • language: grammar/vocabulary, literal

BrocasAreaSmallOVERVIEW

If someone has a agnosia (perceptual loss) on this side they may have an aphasia (language processing disorder) and process before typical interpretation (even literal) information so they loss the words (they become sounds), and they may have visual agnosias (face blindness, meaning blindness, object blindness) so they will not pick up body language this way and may rely on overt gesture and overt tone to get  “meaning” (using the right side of the brain to compensate for the left). less literal and less logical in their processing this could be someone with Autism.

So The Brain Is Using The Right Hemisphere To Decode Information Because Of The Neglect.

LEFT HEMISPHERE SYNDROME

VISUAL AGNOSIAS

EARLY BRAIN INJURY ARTICLE 

This could apply to people on the spectrum who have had and recognise brain injury as apart of their autism profile and how they have developed in many areas of functioning. From a personal perspective this article is very informative.

As a person who has left hemisphere brain injury (as apart of my autism), language processing disorder (aphasia) and visual agnosia this is I feel a step in the right direction.

Other Trajectories that Affect Development 

Paul… for some its brain injury… for some its immune dysfunction… for some its a neuronal migration disorder… for some its being prem… for some its hypo-connectivity… for some its hyper-connectivity.”

Brain Injury

Immune Dysfunction Syndrome

Neuronal Migration Disorder

Premature Syndrome 

Hypo connectivity Syndrome 

Hyper connectivity Syndrome

Fetal Alcohol Syndrome

Prenatal Smoking

Placental Abruption (Lack of Oxygen)

Vacuum-Assisted Delivery 

Toxins

Genetics 

and many more

Donna Williams

Autism & It’s Trajectories Are Not “One Thing” They Are A “Fruit Salad” Unique In Origin 

Other diverse factors exist in how a person is on the autism spectrum and my own are as diverse and person-centered as another person’s trajectory. It has it’s own “Fruit Salad”.

Donna points out it isn’t just one defining factor but many many different ones and it’s important to not only acknowledge this but to also understand it is a reality for someone too and factors they bring with them. There could be a whole mixture of different factors that contribute to someone being on the autism spectrum.

In other words not only is “autism” not one thing but also the trajectory defining origins/factors aren’t one thing thing either.

DIFFERENCES BETWEEN AUTISM & ASPERGER’S SYNDROME – DONNA WILLIAMS’ BLOG

WHAT IS AUTISM? – DONNA WILLIAMS’ BLOG

Paul Isaacs 2014


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Living In Half A World – Hemispatial Neglect In The Context Of Autism

Note this is from a personal perspective of having this clustering syndrome 

It was interesting looking at a video I was presenting at an Tony AttwoodAutism Oxford UK earlier this year being “blind” to my right side is certainly an odd/interesting life. 🙂

Definition of Hemispatial Neglect 

Hemispatial neglect, also called hemiagnosia, hemineglect, unilateral neglect, spatial neglect, contralateral neglect,unilateral visual inattentionhemi-inattention, neglect syndrome or contralateral hemispatialagnosia is a neuropsychological condition in which, after damage to one hemisphere of the brain is sustained, a deficit in attention to and awareness of one side of space is observed. It is defined by the inability of a person to process and perceive stimuli on one side of the body or environment that is not due to a lack of sensation. Hemispatial neglect is very commonly contralateral to the damaged hemisphere, but instances of ipsilesional neglect (on the same side as the lesion) have been reported.

Physical Observations

10338674_881821881831690_7870309102355592004_o (1)

The factors that can be picked up is when I speak the right side of my mouth doesn’t rise and fall (giving it a crooked appearance) this also can happen when I smile as well as the eyebrow on the right side not rising and muscles looking lax and frozen.

If look at the picture to your left (left and right are reversed) you can see the difference in brain activity.

Note – the mouth and eyebrow on the side I am “connected with”

Left Hemisphere Brain Injury

Part of my Autism Fruit Salad is brain injury this was no doubt in the womb and compacted by complications such as fetal distress, silent stroke, cerebral hypoxia and placental abruption this would also explain the fact that I am blind to the the right side of my body this also includes

What has helped?

  • Cycling and Riding Bicycles
  • Walking on Different Terrains
  • Swimming
  • Drawing & Creative Activities
  • Hand Writing
  • Tinted Lenses
  • Positive Attitude

Conclusion

Integration of the the neglected hemisphere could certainly be a start and could help not only with learning and experiencing new skills but also assist in good mental health also. (of course strategies will be very much person-centred).

Paul Isaacs 2014