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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There Are Two Types of “Social Emotional Agnosia” in Autism

abstract background close up construction

“Typical” Social Emotional Agnosia

Social emotional agnosia is the inability to see and/or perceive body language, facial expression and tone of voice, this mean that the person is only “seeing” factual information this rides along side an secondary factors such as a language processing disorder, alexithymia, mood, compulsive and anxiety disorders for example.

This tends to be found in people with a diagnosis of Asperger’ syndrome and is related the right hemisphere for the brain up to 30% also have faceblindness and sensory hypersensitivities.

“Perceptual” Social Emotional Agnosia

If we think of visual information up to 70% of is visual so what if a person simultagnosia? The inability to perceive more than one thing in their visual field rendering the ability to take in “social” information difficult, perceiving faces, objects and surroundings as “pieces”. What if the person has a receptive aphasia, auditory verbal agnosia and cannot retain information secondary to oral apraxia, verbal agnosias, exposure anxiety , mood, compulsive and anxiety disorders for example.

This tends to be found in people with a diagnosis of Autism and is related to the left hemisphere of the brain and the occiptal lobes and sensory perceptual disorders.

Image result for shoes paired

Image result for shoes paired

You can have two pairs of shoes that “look” the same but once you look inside them you realise they are different in terms of “mechanics” that would mean differing styles of learning, communication and mentalising will come into play.

Paul Isaacs 2018


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My Language Development – Receptive & Expressive Aphasia & Visual Agnosias

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Note this is from a personal perspective
Overview

Yesterday I presented a speech on my life with autism afterwards I had an interesting conversation with a lady who specialises in aphasia and language development so I thought I would go through my language trajectory.

Speech & Language Delay

I had both delays in speech and language acquisition this means that I was missing milestones on both these areas of language development.

This was noted by my parents during those early years of development and I didn’t a level of functionality to my speech until late infancy.
Receptive Aphasia

This meant the the language of “the world around me” was a garbled tumbling mess that was feel of noises, inflections but not “meaning” in the typical sense at times I would be interested in these “noises” perplexed, intrigued even but it was very much a swirling bottle neck with the words being at the deepest part of ocean within the sea-back grasping yet not.

Expressive Aphasia

When expressive language did present itself it was not at the level firstly of my chronological age and secondly what coming did not reflect what I wanted to say to people around me so there was quite rightfully and frustration there as words would “drop” both receptively and expressibly sentence construction, “word-finding” and neologisms which came in the form of echolalia was present and having created my “own language” (pattern, them and feel) before typical interpretative language and unpicking that was difficult.

As I have said I had before I had “words” within my head but grasping them, finding them and using them was being “blocked” by other factors.

Conclusion

Looking at my overall trajectory would say that I had global anomic aphasia, coupled with additional difficulties created by the visual perceptual disorders and oral apraxia.

OVERVIEW OF APHASIAS

Visual Agnosias, Simultagnosia & Semantic Agnosia – Related to Anomia

The word finding aspects I can split into two aspects, firstly the nature of aphasia itself, not being able to use word retrieval, secondly the perceptual disorders (visual fragmentation, visual semantic problems) and not having “visuals” for words meant that making tangible and “concrete” associations was difficult.

I had to use a lot of tactile-associative strategies sniffing, rubbing, mouthing and sculpting my “external reality” in order to get a aspect of meaning I still very much “live in a world” before the literal so significance and bridging the gaps are important to me.

This meant that perceiving objects, people, faces was one aspect verbally being able to name them was another aspect of language which I found difficult.

Oral Apraxia

I had this which layered the impact of speech production the use of my tongue, mouth, jaw and having a level of “disconnect” between the “words”, the “mind” and “body” not acting as team and going on there own path.

This caused difficulties in expression this carried on for many years and was notable present in observations of me at a CAMHS assessment in 1996 for at that time clinical depression.

Residual Issues Still Present?

I would say the are in particular when I am tired this is something I have become more aware of as I have researched and got older so this means that sometimes my expressive speech can become laboured, slow and I can miss out words in sentences and struggle with “word-finding” etc.

What helps me is music, gesture, tone, placement, telegraphic language and objects of reference to gain the firstly and foundation and then secondly meaningful association. However as always I continue to live life, experience life and enjoy life as much as possible with new experiences, friends and creativity 😉

Paul Isaacs 2016


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Speech & Language Processing -The Words Within Myself & How Precious Words Are

Me Holding Something 2

 

OVERVIEW

This is a personal overview of my Autism “Fruit Salad”

For the first 5 years of my life I was functionally non-verbal (internal jumbles of sounds with words within myself but unable to come out) and there was a massive disconnect, words were sounds, sounds had no origin, language was internally and externally jumbled so I had no language with meaning in my head, people were fragmented blobs making “noises” to each other, when I had budding moments of connectivity I lost them due to a mouth and tongue not coordinating. Of course the capacity for words was within me  and words were within me but sensory perceptual issues and coordination issues played their part in this.

I did begin to piece things together I was aware of what others were saying about me in the playground at primary school for example, this is documented in my first book Living Through The Haze.

Parts of my Fruit Salad played apart in this such as

  • Simultagnosia – seeing things in bits and pieces, losing “wholes” and “connecting dots things where all fragmented.
  • Semantic Agnosia – I touched to perceive, to experience, to navigate, to sense, to connect, to understand my own self in relation to other and I also touched to communicate.
  • Aphasia – words were like sounds with no meaning, context or function other than it was a sound emitted from a fragmented blob as time progressed contextually words would come. and go however because of my outward behaviour I listened to some very ignorant things about myself without others connecting I was listening/processing.
  • Auditory Agnosia – I heard sounds and even now I wonder contextually where they come from sometimes sounds fill with wonder and confusion.
  • Visual-Verbal Agnosia – This along with Dyslexia made it hard for me to read with meaning and an understanding of what was on the page in front of me.
  • Oral Apraxia – One of the reasons I struggled to speak in the early years was the physically disconnect between my brain finding words and my body expressing them.
  • Echolalia/Echopraxia/Echomimia – These were used during my period of development where I was experimenting with words and movements and sounds – this was during the time I acquired functional speech

More info on my webpage about speech and language processing 

Paul 1996 - 7 2

 

TV Shows

I loved Mighty Morphin Power Rangers and Hook my gateway to movement and language – when functional expressive speech came at 7/8 years old, it was developmentally that of a 3 year old I have to admit I was scared of this new language and wanted to go back but I kept moving forward. I still rely on the sensing system and at home I use this language still, I am glad that had parents that didn’t write me off. 🙂

All Profiles Are Different & Other Forms Of Communication

Please realise that all different profiles are different and please also be aware the people who do not speak through their mouths have a  human right to be able communicate, this is something I feel strongly about and something that should be embraced and acknowledged.

Paul Isaacs 2014


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Speech/Language Delay, Visual/Auditory Processing & Body Disconnection in Autism

Paul Year 1

Note this is my own personal experiences of Autism

PATTERN, THEME & FEEL (D.WILLIAMS) – A WORLD BEFORE “KNOWINGNESS”

I was non-verbal for 5 years or more (I had a lot of words in my head) I had speech and language delay Aphasia,Apraxia of speechAuditory verbal agnosia) – (expressive and receptive) my Mum thought I was deaf and blind (this was due to Visual agnosias and Auditory agnosias), I used movements, clicks, sounds to convey information to others (I still use this when happy, excited and/or distressed) I consider this my “primary language” and interpretive language a second language I learned), pre-verbal than functional expressive speech at around 7/8 years old (1993/1994) that was of a 3 year old expressively. 

SILENT CONVERSATIONS

I didn’t understand that conversations were between two people for a very long time used to look at two fragmented blobs making sounds at each other at pre-school and found it rather amusing but didn’t connect that it was an interaction.  I used to make noises/whispers at other children I sat next to in the playground with (that was my form of a conversation) some time also.

BODY DISCONNECTION & VISUAL MEANING

I was already putting my arm behind my back that was to do with trying to connect my body with myself (body disconnection), probably liking the feeling of the fur and not quite understanding contextually where I was.

Paul Isaacs 2014


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Autism – Auditory Agnosias/Aphasias & Oral Apraxia – Not “Processing” Environmental Sounds & Words With “Meaning”

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OVERVIEW

Note – This is from a personal perspective

As apart of my Autism Fruit Salad (Donna Williams 1995/2005) I have auditory agnosia, this means I cannot process “environmental sounds” with meaning, comprehension and not retaining the “sound” in context (so for example “hearing/processing” and ambulance and retaining it it). This is one of the reasons why my parents thought I was deaf, I was/am neurologically deaf but their is no specific impairment to my ears.

AUDITORY AGNOSIA

Discriminative

This type of auditory agnosia is caused by lesions to the right hemisphere of the brain.

Classical (or pure) auditory agnosia is an inability to process environmental sounds, such as animal noises, industrial noises, or the like. An airplane roaring overhead would not be understood to be related to the idea of “airplane”—indeed, the person would not even think to look up.

So How Does This Work

  • I can “hear” the sound lose it’s “meaning” and not “hear/comprehend” in association to where it’s coming from
  • I can have a sound in my head but not “know” it’s origin – this would lead me to repeat the sound in an echolalic fashion
  • I can have sound in my head and flip flop between comprehending and losing comprehension
  • I ultimately lose meaning/comprehension of sounds on daily basis and have to be verbally reminded of basic sounds such as mobiles phones, trains, cars, lorries etc.

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VERBAL AUDITORY AGNOSIA/APHASIA

Semantic-associative

This type of auditory agnosia is caused by lesions to the left hemisphere of the brain, specifically the temporal lobes and Wernicke’s area.

Linguistic (or verbal information or Wernicke’s) agnosia indicates that the subject can’t comprehend words, although they can understand words using sign language and words from reading books, and are themselves capable of speech (and even of deriving meaning from non-linguistic communication e.g. body language) the particular sounds associated to each word are meaningless.

So How Does This Work

  • I hear words but cannot process meaning/context this means that clipped language is better for processing and meaning
  • Like Donna Williams I like people to use gesture (like mime) to tell the story and use movements that match the words
  • If over processed I will gain no auditory meaning from the words being said
  • I like to touch to perceive (visual agnosias) which helps with language

EXPRESSIVE APHASIA & ORAL APRAXIA

So How Does This Work

  • As a child I had thoughts in my head but had problems using my mouth, tongue, muscles and jaw to convey “words”
  • My mouth felt disconnected from “me” and my “words”
  • I lost words within my “head” (expressive aphasia) so “created” I words/sounds for feelings and communication
  • I speak but I have a lot of bass to my voice, tone is unusual, pitch and rhythm also (oral apraxia)
  • I use “stock expressive language” to aid with expressive language

CONCLUSION

I believe that this is one of the reasons I still live in a Pattern, Theme & Feel world, I created my own language through the auditory and visual cluttering that I had (and still do) and I still find typical interpretative language difficult (I treat it as a second language) but I try and use it to the best of my abilities. 🙂

Paul Isaacs 2014


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Autism & “Route” Expressive Language & Pattern, Theme & Feel Language (D.Williams)

Nan and I 1990s

OVERVIEW

EXPRESSIVE LANGUAGE

I was functionally non-verbal for about 5 years, I had speech delay and language delay, oral apraxia and then I was pre-verbal and I gained “functional” expressive speech (of a three year old) between the ages 7/8.

Before that I lived in a pattern, theme and feel (Donna Williams) with language such as creating sounds, movements to convey my emotions and communicate as well as touching and sculpting.

TYPICAL FUNCTIONAL EXPRESSIVE SPEECH “IS NOT MY NATIVE LANGUAGE?”

Typical/functional speech is to me. is still at times not my native language.

Living in a world before typical interpretation and meaning?

This is do with many developmental factors and information processing challenges as follows

CONCLUSION

I have learnt to use functional language as pathway and with different developmental and processing blockages took a longer time to get there.

My conscious mind is much like many a leaf blowing wind and struggling to internally mentalise, however I am thankful for the ability to be able to use words.

I still from a residual sense (both visually and verbally) live in a world before typical interpretation.

Paul Isaacs 2014


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6 Months

Me at 6 Months Old With My Teddy

 

OVERVIEW

The Autism spectrum is a diverse spectrum of different profiles or as Donna Williams puts it “Fruit Salads” and different profiles means different presentations – I myself was diagnosed with Autism in 2010 and through recent interesting and fascinating conversations with Donna here is why I have an Autie Profile.

 

Copyright D.Williams from her Blog Differences between Aspergers and Autism ‘fruit salads’?

Fruit Salad Analogy Donna Williams

Fruit Salad Analogy Copyright D.Williams

  • higher degrees and severity of gutimmunemetabolic disorders, epilepsy and genetic anomalies impacting health systems – This is related to the family and history of cancer of both sides of my family including a recognised gene deletion 

  • mood, anxiety, compulsive disorders commonly observed since infancy – This is in my book “Living Through The Haze” in my early years I was showing signs of these issues from pre-school onwards

  • commonly amazing balance but commonly hypotonia

  • simultagnosia/meaning blindness rather than just scotopic sensitivity – Visual fragmentation and “seeing without meaning” is specifically to do with both simultagnosia, context blindness and semantic agnosia

  • verbal agnosia/meaning deafness – I have problem with filtering words with meaning they revert back sounds the larger the chunks of information

  • verbal communication impairments (aphasia, oral dyspraxia, verbal agnosia and associated echolalia and commonly secondary Selective Mutism)- “losing words within me”, having problems with articulation, patterning, themeing and feeling my own langauge (before interpartive language), reading information without meaning, echolalia and when speech was gained

  • higher severity of LD/Dyslexia/agnosias – Yes this relates to understanding/processing information

  • tendency toward OCD/Tourettes, also higher rate of Schizotypal PD, DPD is common and tends to be more severe – Yes developed OCD aged 12, tic disorder and throat clearing age 8, Schizotypal and Borderline PDs

  • higher tendency to Exposure Anxiety more than AvPD – Exposure Anxiety in Childhood/Teenage Years and  and Early Adulthood

  • higher tendency toward dissociative states (dissociation, derealisation, depersonalisation) – Yes this relates to me

  • poetry by those with autism as opposed to AS commonly indicates those with autism can have high levels of introspection, insight – Yes this does relate to me

  • ADHD extremely common co-occurrence – Hyperactivity as a child

Conclusion

Donna Williams Analogy does expand on the true diversity of Autism and all it’s different presentations I hope this helps others as much as it has helped me. 

Paul Isaacs 2014