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 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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Future Diagnosis’ – A Further look Autism and Asperger “Fruit Salads” & The Inner Mechanics

The Changing Landscape of Autism Diagnosis

Looking how the scope of how the autism diagnosis has changed over the decades here is an overview

  • 1940s and 1950s – Autism was considered a form of attachment disorder
  • 1960s – Autism was considered a form of “childhood psychosis”
  • 1970s and 1980s – Autism was considered a form of mental retardation
  • 1990s – Asperger’s syndrome was added as a diagnostic criteria
  • 2000s to now – Autism and the impact of sensory integration issues

The truth is autism is has different trajectories and components it is best to look at autism as 3 dimensional a stacking of pre-existing syndromes/conditions/disorders that are person-specific.

So let’s look at the breakdown between “Autism” and “Aspergers” Fruit Salad looking at through the lenses of Donna Williams’ analogy.

 

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Autism “Fruit Salad”

 

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Aspergers “Fruit Salad”

 

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Conclusion

On the surface “Autism” and “Aspergers” may appear the “same” but digging deeper and looking at the profile differences and what makes up the differing profiles surely means that the wants, needs and interventions will be specific to the person in question and what they need will not be the same. Autism is not a generic “one size fits all” condition it is made up of many different elements specific to the person.

It is my wish that in the future when some is diagnosed with autism they will look a the full package this would include potentially different professionals being involved if differing diagnosis are willing to be made such as –

  • Speech and Language Therapists
  • Neurology Specialists
  • Dietary Specialists
  • Genetic Counselling
  • Gut, Immune and Metabolic Specialists
  • Mental Health Psychologists & Psychiatrists
  • & Other Empowering Interventions

 

Paul Isaacs 2017


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Minor Facial Anomalies (Dysmorphisms) in Some People With Autism

Note This is from personal observation and doesn’t represent all people on the autism spectrum and facial anomalies affect a percentage of people with autism these are from personal, parental observations as well as a contribution by Dr. Emily Casanova and would need to see a dysmorphologist but just from general observations certainly my eyes, philtrum, nasal bridge have particularities.

Looking back at some of the pictures in my youth and reading the studies it is interesting draw conclusions of these variants in facial structure

Reception

. Here is some text from the article in a study on the subject in 2012.

The study found children with autism had wider eyes, and a “broader upper face
,” compared with typically developing children. According to the study, children with autism also had a shorter middle region of the face – including the nose and cheeks – as well as a wider mouth and philtrum, the divot above the lip and below the nose.

The study also found that children with more severe autism traits such as behavioral problems, language difficulties, and repetitive behaviors had distinct facial differences from other children with milder autism.

Baby Pictures High Chair
Broader Upper Facial Region (Forehead & Shallow Nasal Bridge) 1

Baby Pictures Deck Chair I Year Old
Broader Upper Facial Region (Forehead) 2

Paul 1996 - 7 1

Wider Upper Face (Wider Set Eyes) – Looking at some pictures in my early years I do have a wider mouth, wider set eyes and also a broader upper facial region (notice in this picture right eye is slightly misaligned and the left is looking straight ahead). This photo was taken in 1996.

Me Toddler

Shorter Mid-Face Region 1 (Nose, Cheeks & Philtrum) I also have a shorter middle region of the face this includes the cheeks and nose region as well as the neurological effects of mild brain injury and visual perceptual disorders (notice the left eye is misaligned and inverting outwards while my right eye is looking straight ahead). This photo was taken in 1990.

Toddler 1

Shorter Mid-Face Region 2 (Nose, Checks & Philrum) My philtrum I would say is somewhat wider (but not overtly noticeable) and shallow you can see a shorter mid face region (nose and cheeks) giving my face a “squashed” appearance. (notice eyebrow misalignment) This photo was taken in 1990.

Scarf and Braids

As my face has grown some of the characteristics are still “there” just not as noticeable and would certainly consider them minor anomalies in that context. I do notice in this picture a shorter mid-face region between eyes and upper lip, wide mouth and philtrum to some degree, residual effect of mild brain injury with asymmetrical smile. This photo was taken as adult in 2010s.

Eye 1

Eye 2

Shallow Philtrum

Profile Shot 2016

Premature Birth & Left-Handedness

In the book the “Left-Hander Syndrome” by Stanley Coren he concludes that potential birth difficulties such as trauma, foetal distress, c-section section (to name but a few) can contribute to people being left handed also rare physical characteristics such my case two ears noticeably different heights on the head. This conclusion in my case is clear that a part of my “autism fruit salad” and that the complications of brain injury and handedness (such as language aphasia, simultagnosia, semantic agnosia etc) has had an overall impact on my development as well as psychological mood, anxiety disorders as well as depression.

“The findings of that paper only seem to apply to a minority. I wouldn’t necessarily say you fit the results. However, just at a cursory glance, your childhood pictures do seem to be mildly dysmorphic. Shallow bridge to the nose, epicanthal folds (which are due to underdevelopment of the bridge of the nose), mildly downslanted palpebral fissures, possibly a shallow philtrum but hard to tell just from photos. You would have needed to have measurements done. The spacing of the eyes would need to be measured, because the appearance of the bridge of the nose can give the illusion of different spacing of the eyes. Have you ever been genetically tested? It’s not a bad idea.”

Observations of pictures by Dr. Emily Cananova which have been noted by my parents I certainly have larger “doe eyes”, a wider mouth, smoother philtrum – still a human though! 😉

Other Blog Pages On The Subject

Autistic Facial Characteristics Identified

FASD, Autism and neurological challenges

Paul Isaacs 2016


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“Autism” – It Is Different For Everybody

“Autism” what is it?

Fruit Salad Analogy Copyright D.Williams

Fruit Salad Analogy Copyright D.Williams

Autism is word for a clustering of different co-conditions that come together to create the “presentation” and therefore when one uses the word “Autism” it should be specific it what that means for the person themselves and what the “mechanics” are no one is the same so why should one condition mean that everybody has the same viewpoints? Profiles? Processing issues? and outlook – realities and perceptions.

Stereotypes – Are They Damaging?

If a “one size fits all” perception of autism then yes – it will affect outlooks, mental health, interventions, motivations, opinions (created and/or forced) not all people on the autism spectrum are logical, literal thinkers/processors, not all are visual thinkers/processors and everyone on the spectrum has their own unique wants, needs and aspirations it not about setting someone up for a fall or failing to recognise a person because they don’t “fit in”.

Lines Culture or Created Culture?

Anybody can create a culture it can start off with an ideal and/or ethos that then becomes reality – I don’t believe that autism is a different culture and never have done. What I do see is a culture being created around autism. Which is a different thing altogether.I am all  and firmly for equality, humanity, humility and happiness. And for people on the spectrum (like everyone else in the world) to have an equal shot at life and have opportunities.

What I am not for is false prophets, venomous politics,  militancy (from culturists and curists) – I prefer to be neutral and through that you can see both sides in balances democratic manner, selfishness and so forth all voices have a right to heard, acknowledged and recognised – disagreement is fine but at what point does one go too far? I have made this point in previous blogs that I think that the autism world will eventually implode on itself and how many people on and off the spectrum suffer as result? Just because they didn’t “tow the line” or “say the right things” Will it be just the same sycophancy? Or will all (people on and off the spectrum’s) view’s be heard? I wonder? Let’s stop the man-made barriers and start listening to ALL peoples views.

I am not angry but I am upset – not really for me but for the others who will be affected.

Paul Isaacs 2015


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There Is No Collective “Sameness” In Autism The Profiles Are Person Specific

Lindsay Meetup 2014 Hi-Def4Autism & Identity 

Autism is a developmental disability which has an effect has and effect on a person’s functioning in various different areas of functioning. It is a diverse in its presentations, profiles and most in importantly the “mechanics” in other words what is different parts of the “clustering”.

Identity could be to to with the politics and culture that has been created around the Autism & Asperger’s Syndrome they are words for an overview of specific profiles and presentations. I don’t believe that autism is a culture at all. We are all human and cultures are created around “things”.

Autism & Asperger’s Syndrome – Profile Differences

Observations and studies 

Observations from autism consultant Donna Williams and also a recent study in 2011 shows structural differences from a neurodevelopmental perspective within different areas and regions within the brain. This I feel is important not only for people on the the spectrum but family members, teachers and other forms of support for the individual in question.

It is about personalising the support. There are of course people within who have both an Aspie and Autie in terms of mechanics which shows have fluid presentations are.

Autism Rather Than Asperger’s? Why? 

This isn’t specifically to with with my identity (I see myself as a person first( at all and isn’t said the intent to annoy or aggravate people neither. When I say “I have Autism rather than Asperger’s” I am talking about mechanics (what makes up my autism) and my formal diagnosis and differences which are apparent to me and how important it is to know them from this perspective. I have written many blogs on the subjects.

Why I have Autism Not Asperger’s Syndrome  

Why I Have Autism (Rather Than Asperger’s Syndrome) And The Importance In The Differences

Autism – No One Person Is The Same 

Autism is a clustering of pre-existing conditions that build up the person’s profile’s and presentation’s –  there is no “sameness” in that everyone on the spectrum is the same or share identical characteristics. I destian from using “us” and “we” language (single representation) and also “them” and “us” language. (people with autism and people without) Firstly because it is inaccurate to do so, secondly the only perspective I have is my own that is it and thirdly as an autism advocate that is a professional responsibility that I take very seriously I will not adorn to the status quo just because “that’s what is people want to hear”. I cannot speak for everyone that would not be right and potentially damaging.

Lets start being person-specific about profiles not generic, generalised and batting out stereotypes that can make people feel isolated or worse.

Toddler 1The Lost Voices – More Inclusion Needed

Everybody deserves and has a right to talk about their experiences – one could argue it is human right what has concerned me is the political militancy that I have observed on social media. I wonder how many more people are going to be hurt? I hope that is stops and people start listen – because sadly voices (valued perspectives) are going to be lost through bullying and silencing.

I have written this before but I feel inclusion is for everybody 

  • People with Autism and Learning Disabilities
  • People who Are Functionally Non-Verbal
  • Views and Perspectives From The Whole Spectrum (Different Cultures & Backgrounds)
  • Parents, Carers & Guardians
  • Autism Specialists
  • & More

Paul Isaacs 2015


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Neurodiversity – Sometimes Things Have To Be Questioned

Dr Casanova

Dr Casanova

I have a lot of respect for Dr Manuel Casanova and this a very revealing blog about the subject of neurodiversity and what it means – it is my opinion that no one person can “represent” autism just because they themselves are on the autism spectrum.

I Can Only Speak About My Reality With Autism

I make professional and moral judgement to say this is my profile and that is the ONLY place it is coming from (I can’t speak for others on the spectrum) – I say “I” and “me” not “us” and “we” in speeches (again I cannot speak for everyone on the spectrum that doesn’t make sense).

I don’t believe autism is a “culture” either (I am apart of the human race) and I think we need think about what is projected and who is losing out? Is it people who don’t tow the line, fit the “stereotypes” are not seen as good advocates because of their “functioning”. I wonder? I know we all have a story to tell? But is it right for someone to tell their story on everyone else’s behalf?

Empowerment & Acknowledgment Of Multiple Realities Of Autism 

Autism is a “Fruit Salad” it is not one thing, it isn’t one syndrome and it affects people in different ways so what Manuel is advocating is that the more realities we acknowledge and listen to the more understanding we have – their should be no single representation because the voices get lost, realities can form into assumptions and they are both dangerous and can make people feel isolated and alone in their struggles.

Autism As As “Fruit Salad” & Breaking Down “Stereotypes”

Fruit Salad Analogy Copyright D.Williams

Fruit Salad Analogy Copyright D.Williams

As Donna Williams analogy points out “Autism” is not “one thing” it is a clustering of different pieces that create the person’s on unique profile and presentation that means that logically no one person is the same on the autism spectrum, therefore realities within autism are different and people on the spectrum are not all the same, nor do they have same needs, desires or aspirations. I will take that one step further and say if someone got up on stage and talked about “non-autistic syndrome”  and made the assumption every one with this syndrome is the same we would be in big trouble.

The Whole Spectrum & Personhood 

I am for one agree and for empowerment, inclusion, diversity but that must be inclusive to the whole spectrum of “Fruit Salads” and the realities within them and seeing someone’s personhood is very empowering.

People With Classic Autism and/or Learning Disabilities & People Who Are Functionally Non-Verbal (Who Are Empowered By Different Forms Of Expressing Words 

Looking at the whole spectrum means looking at different profiles and presentations and the firm empowering inclusion of people with classic autism and/or learning disabilities and people who are functionally non-verbal. Sometimes I worry that people with these diagnosis’ (who are considered to have an “exotic” or “atypical” presentation) and profiles don’t get recognition or heard. They are competent folk who need support too and their realities should be explored and recognised. They deserve to have voice.

Parents Views

Parent’s views are very important too and explorations of different ways to empower, support and help their children is also needed.

Autism “Politics” 

I stay neutral and balanced like I point towards being a moderate in my views on autism accepting the diverse, different realities and people’s stories and what their own personal experiences are (be that a parent, guardian, person on the spectrum etc) all are valid.

I have said before that I’m not a “curist” and I’m not an “ableist” but a “neutral” because I believe everyone has a story to tell without going to unhealthy extremes if we listened with our hearts we would learn about each others experiences.

Other Blogs On The Subject

Please Include Everyone On The Autism Spectrum, Listening Is Positive & No One Person Can Speak For Everyone On the Autism Spectrum

Listening & Hearing Everyone’s Views In The Autism”World”

Paul Isaacs 2015


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What A World Before “Typical” Interpretation Means To Me

Note – This is from a personal and developmental perspective 

I have been writing for many many months now about my personhood and my developmental disability and how they interact – interjecting, unraveling and pinpointing different aspects of it hopefully helping anybody who connects with it. I world before meaning let’s start with that.

What Is Meaning?

Visual, Language Processing & Auditory Information

That means for me when sounds what ever they are (words or in the environment) have limited and/or no origin and the origins are not there in an instant nor is the the association so it has to be found in a different way.

For me things have to be touched in order to have meaning (my visual field is far too fragmented to get make that sort of instant connection) experienced through tactile association. Information and words have to be brought to life through gesture, elevated and exaggerated tone, movement and objects of reference like sculpting a piece of art giving meaning and connectivity.

They Way I Process

I don’t live in a world of logic, practical semantics or pragmatics nor do I work out the world that way. I create but I don’t have a vast cognitive landscape things for me have to be more refined.  My emotions come more through my movements more than my words (although I can use both poetry to extract) I like things that don’t require any complicated reasoning or explanation.

Sensory Explorer 2Such as 

  • The roughness of bark
  • The texture of moss
  • The feeling of swimming colours
  • The movement of the water
  • Sounds and words that don’t have an origin but sound and feel nice
  • Sculpting faces
  • Patterning movements

Autism & Asperger’s Profiles

I have Autism and knowing to difference between an Autism profile and a Asperger’s is needed in order to understand the mechanics but never over invest or over define a person by their condition always remember personhood is something people all share. If people keep thinking and educating that autism has one profile, one look and one method of using interventions then we need to listen and be more inclusive. 🙂

Paul Isaacs 2014