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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 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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In Conversation With Sharon King – Autism Speaker, Author, Advocate & Mum

I first met the Kings in 2016 this was somewhat of an interesting meeting of minds, I was nervous it was my first speech/training session as a freelance speaker and it was in Telford at a National Autsitic Society Event. Her daugther Rosie diagnosed with Asperger’s Sydnrome was introducing the speakers in the main hall. I had seen Sharon and her family over the years on social media.

She was in the audience during one of my sessons and we sat down during one of the intervals to chat with her daughter Rosie. They were both very warm, friendly and welcoming I then went to their home the same year to do consultancy sessions with her son and daughter Lenny who was diagnosed with classic autism and Daisy who was diagnosed with Kabuki Syndrome.

It was a pleasure to meet them all including Sharon’s husband Richard who with their charming and down to earth manner it was had left me with a positive and reflective on impression and we have became all beomce friends. Sharon has since of 2017 publised a book “How To Best Help An Autism Mum.”

Sharon’s Ethos

What would you like staff to know about people with autism?

That each person with autism is an individual. Anyone who believes themselves to be an autism expert needs to get humble and go back to learning. The greatest barrier to learning is the assumption that we know everything.

What support benefited you the most as a Mum?

The greatest support has come from my children and othet individuals with autism who I have befriended. An arena of respect is where the best parenting happens. X

Further Conversation

Sharon King

I think. One of the most helpful things I have learned is not to take Daisy and Lenny’s behaviours personally. It is quite freeing. Ie ~ ‘this is happening, how can I deal with it?’ As opposed to ‘this is happening to me…poor me!’

Paul Isaacs

Yes I agree ever take things on the personal because it largely isn’t even the swearing and being bitten doesn’t bother once you know where it comes from.

Sharon King

Yeh like rubbing crap (with regards to smearing) into radiator nor personal ~ just a bit smelly! X

Paul Isaacs

Haha Humour is an ally! I used to urinate in the bath in my infancy I liked how the colour changed in the water I also got confused and would treat my bath as a “very large toilet” it looked like a duck, sounded like a duck so I thought it was a duck no? That is context blindness

Sharon King

At least you admit to it lots of ppl do it in secret! X

Paul Isaacs

Haha 🙂 The sods 😀This conversation proves that open-mindness is the key
open doors rather than closed.
Of course poo smearing can have different motivations for some it could exposure anxiety and keeping “people at bay“.
For others it could be to do with severe sensory perceptual and/or language processing difficulties.
For some it could be to do with addiction, habitual and compulsive in nature.
For others it could be to do with co-dependency.
One “behaviour” can have multiple reasons why. 😉

 

Sharon King

I think with Lenny it stems from a genuine interest and delight in textures x

Paul Isaacs

Sensory perception yes 😊

Its been a very interesting chat as always Sharon as there certainly is a positive an objective theme going on here with your permission could I use your answers on a blog? This then can be put on your page. 🙂

Copied with kind permession of Sharon King

Paul Isaacs 2018

 


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Being Thankful For My Parents

Mum and Dad Early 80s

Please note this is from a personal perspective

It may sound like a cliche in many ways to create a blog with a title such as “Thankful for my parents”  but that is how I feel I know that many people may not for many reasons feel the same as me and that is fine.

I am thankful for them because they  have given me good boundaries, have treated me as a human being then growing up as an infant, teenager and now as an adult, they do not let my disability “define the whole package” (I have written many a blog about that subject), guided me to know that failure and being wrong is normal part of life, to accept and take responsibility for both positive and negative actions, to help people who need it, to always be truthful and be true to yourselves.

I value their sage wisdom as many of these “mantras” and “life skills” come from past mistakes and “failures” but as my parents have noted failures are the fruits of success and success comes in many different forms as example setters for us all.

Paul Isaacs 2016

 


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“Autism” Is Not A Single Thing – So Why Is It Still Being Presented As That?

20160730_121048DIFFERENT PRESENTATIONS 

No one “owns” Autism that includes me, you the person next door- I think it is important to know what “autism” and “asperger’s” in terms of profiles are the presentations that come with them.

POSSIBILITIES AND OPENNESS  

What are the components? (information processing, environment, mental health, personality, identity, learning types) By looking at these pieces you can understand what to do (or not to do) there are many different paths so by being open to possibilities.

GOING AGAINST THE GRAIN

I know my views aren’t popular for one because they go against the status quo of “neurodiversity” that is fine.

LOOKING BEYOND THE RHETORICS

Has anybody wondered what autism really is? Has anybody can beyond the passe rhetorics, memes or generalised views to know how to understand it? To empower  people with autism, their parents and professionals etc?

LOOKING DEEPER MEANS LOOKING AT WHAT IS THERE

Isn’t it time to know what makes up a person on the autism spectrum?  Dig deeper? I can tell you this is what my autism is made up of –

  • brain injury
  • hemiplegia
  • developmental delay
  • speech and language delay
  • language disorders
  • tic disorders
  • mutism
  • related anxiety disorders
  • personality disorders
  • learning difficulties etc.

This took six years of research and self-reflection to get to this point.

 I say to people reading this do not remember me for saying but remember the template that is being presented and what you can relate to and do not relate to

LETS THINK ABOUT IT 

For a so called “accepting autism community” I have seen plenty of internal upset, bullying, gas-lighting, trolling,  arguing, tears and upset to last a life time. Autism has created a “culture” around itself and personally I have seen nothing healthy come out of it. I came into this in 2010 with my parents we quickly got out of it my parents still don’t “get it” the militancy by people on and off the autism spectrum and I have recently been reminded of why I stay clear of it.

The people and parents who seen themselves as human beings first  (not defining by their “autism”), who are living their lives not consumed by labels and redundant definitions are the ones who are great examples.

This isn’t a game and when you are toying with people’s feelings directed at people who dare to above the parapet a speak from the heart and not tow the line Is this fair? I am all for healthy disagreement lets start listening.

Paul Isaacs 2016


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Meeting Up With The King’s

 

This week I had the pleasure of meeting up with the King’s they are family that live in the north of England in the Wakefield. Sharon and Richard have three children on the autism spectrum Rosie who is diagnosed with Asperger’s Syndrome, Lenny with Classic autism and Daisy with Kabuki Syndrome and Classic autism.

Staying with the family was very interesting and reflective on my part, as all the family showed deep love and care for each other being honest about the difficulties and  balanced about them showing deep care and empowerment for each other.

Their kindness and humility was reflected in the hospitality shown to me and the others we met on our travels to the park during my visit it is sometimes the little things that matter as much as the big ones. I look forward to meeting them again.

Paul Isaacs  2016

 


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Living With A Mother With No Boundaries -My Father’s Ongoing Journey

I have a lot of respect for my Father who has along with my Mother given my the stability, autonomy to be “myself”.

Nanny Janet Black and White

“Nanny” Janet in Ireland as an Infant

My Father was born in London in 1961 during that time his Mother had fled from Ireland and moved to the capital working in in pubs and living in small one bedroom holding in the old style basement houses. He had a traumatic existence with attachment disordered, borderline mother who had no sense of right nor wrong, instilled pitiful boundaries and was abusive to him from an early age working in pubs late at night and bringing lovers home and would have sex in front of him.

She would have parties also which were not monitored leaving my Dad to the whim of two female paedophiles at the age of three years old. They two women were on the bed asking him to do things to them what an horrific situation to be in.

My Dad was kidnapped by his Father and taken back to his house in which his partner said “don’t expect any fucking special treatment here”, he was recovered and later move to Oxford city were he resided on an council estate.

Nanny Janet Photo 7His Mother continued her existence of money and drink in either order and showed next to no parental love to my Dad from both an emotional stand point and also a sense of stability as he grew this became more apparent, no emotional support, not getting him the correct clothes, changing his surname without prior permission calling him, emotional manipulation, emotional blackmail, to other residents in the estate and so forth. She projected martyrdom to the outside world and would say do Dad on more than one occasion “Peter, I done my best”. Clearly this wasn’t true.  His absent Father’s last words time was a phone call in the early 90’s  saying “I didn’t  love you anyway.”  At the very least he was honest.

His Mother re married to a man who clearly had the same ethos as her and made it very clear to Dad that he didn’t like nor wanted him in the house.

Mum and Dad Early 80s

Mum & Dad Early 1980’s

My Dad’s life changed in the when he met my Mother in a club in the 1980’s I think that not only changed his outlook on life but also, it took many years of pain, discomfort and self-awareness for my Dad to become the man he is today, he freely admits he has made many a mistake and has a positive attitude towards life  despite having a horrific upbringing with no love, care or sense of commitment.

Both my parents have giving me the gift of having a stable upbringing in the family home, giving me good foundations of boundaries, friendship, failure as normal and trying I am thankful for that and even more so knowing the history.

Paul Isaacs 2016


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The “Autistic Identity” Phenomena

When I was diagnosed was autism in 2010 – I wasn’t aware of such an “identity” because to honest I was never in that “world” at all. I often wonder that despite the obvious difficulties I had during my development and environment the one thing that I had going for me was the simple “human-hood” which was conveyed by the my parents as a way of connecting with me.

I don’t consider this perception from my parents to be “unique”, “specialised” or “autistic-specific” in its intentions nor in its thinking at the time (although it could have well be seen as that on reflection).

I Wasn’t Born With a “Label”

In many of my blogs I have spoken about the balance of being seen as “human”, “person” and “being” first and as I have been in this “world” for over five years. I have seen the firm importance of seeing people as “people”, by not defining their whole “soul”, “identity”, “being” by their label (or labels) nor having it being overtly defined for them so there is nothing else left.

“Labels” Are an Adjective Not an Overall Definition

If everybody was to be defined by solely by a “label” wouldn’t it be restrictive, suffocating and narrowing your bandwidth of experiences, perceptions, thoughts and feelings?

Not Towing the Line Meant I Could See “myself ”

I am glad that I haven’t towed the line into the realms of stereotypes, group think, confirmation bias and all the militancy that goes with it. I am glad that my parents after I was diagnosed said that I am still “Paul” regardless. I am glad that I see the importance of seeing somone as a person first. I am glad that I have other interests that take up my time productively such as drawing, poetry, walks in the countryside and meeting up with friends.

People Are People Regardless

I am free to think and feel and have a more refined outlook that I am firstly and thankfully not being the centre of the universe, not the big answer all to the questions, not speaking for “all” (because no one can) and have a egalitarian view that all people are of equal worth in this world no more and certainly no less.

Paul Isaacs 2016