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Autism from the inside


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Strategies For The “Pieces” of My Autism Using Donna Williams’ Fruit Salad Analogy

Fruit Salad Analogy Donna Williams

Note – That this is from a personal perspective of my profile and what makes up “my autism”

Here are all the pieces of my Autism broken down into bits and chucks with a personal perspective on each bit and personal strategies that have helped me over the years.

Expressive Agnosias

Alexithymia

This is an issue with processing one’s own emotions it affects about 85 percent of people on the autism spectrum and is experienced on different levels depending on how one is affected and what moods create the issue.

Personal Perspective

For me emotions come outside in and not inside out they are an invasion a wave of energy that is uncontrollable, invisible and scary – negative emotions take longer to process and configure as well – for example it took my 3 whole years to process (emotionally) that I was being bullied at work everybody else knew I didn’t. I a wave of energy hit me that night as I cried uncontrollably with the realisation of what happened again it took 3 years. As a teenager I would tense my face up and self-harm in the form of knuckling my cheeks, slapping my legs and hitting my arms in confusion and disconnect.

Strategies

  • Paul what are the origins of your feelings (helping me find a starting point)
  • Paul are these feelings environmental (situational) or is this not
  • Use objects of reference and gestural language and representation to explain

Receptive/Expressive Language & Movement Issues (Speech & Communication)

Aphasia

There are many different forms of aphasia which affect both expressive and receptive communication

Personal Perspective

Sounds and language intermingled and became indisputable I would react with glee and find these “sounds” that people made and tilt my head in wonderment, perplexed and even intrigued by these “sounds” this was at pre-school – event now receptive language is difficult for me (words process back into sounds meaning deafness)

Strategies

  • Clipped telegraphic language
  • Tone and overt melody
  • Gestural language – creating movements which connect with the words like a play
  • Allowing processing time

Speech Delay

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Personal Perspective

Swirling sounds and words in my head – I had problems with expressive speech for about the first five years I had no functional language in head for many years – I would have moments of clarity, moments of language which slowly progressed but no one saw because of my external behaviours I had limited words within my head which progressed – no one should be written off if they don’t have expressive speech, I heard things in the playground and slowly processed them and because of how I appeared it looked like I didn’t hear/understand.

Strategies

  • Word and sound play
  • Movement
  • Not presumed incompetence

Language Delay

Personal Perspective

At around the ages of 7/8 years old I gained functional expressive speech of (from a developmental perspective a 3 year old) – with the receptive and expressive language disconnect I had issues with understanding to express and equally expressing to understand. This lead to confusion with not only myself but others around me Speech Apraxia (Verbal Dyspraxia) also compacted the issue (coordination of the mouth and tongue and jaw muscles to extract speech) this was prevalent until late infancy in my CAMHS (Child & Adolescent Mental Health Services) notes speech production was at times heard to understand.

Strategies

  • Clipped Telegraphic Language
  • Gestural language (both from myself and speaker)
  • Word, Sentence & Language play (use of syntax, meaning, word production, sentence connections)
  • Contextualisation of words

Selective Mutism (once functional speech was acquired)

During late infancy and early teenage-hood I had bouts of mutism (having the ability to speak but because of anxiety would not) this included – people who I sensed were non genuine, too much expressive language from speaker (meaning deafness) so unable to give an answer that was contextually correct.

Strategies

  • Understanding the origins of the mutism (social anxiety, exposure anxiety, OCD obsessive compulsive disorder, language processing disorder, social phobia etc)
  • Boosting self-confidence – such as in my cases drawings and exercise
  • Understanding the receptive and expressive communication profile

Tic Disorder & Globus Pharyngis – 8 Years old – was called a “Nervous Throat”

Personal Perspective

In mid to late infancy I had what was termed a nervous throat this was to do with the “feeling” or an obstruction in my throat causing me to in a tic-like fashion make a loud “Hum!” and “ahem!” sound.

Strategies

  • What are the places of anxiety in one’s life that has caused this
  • Making me aware of when I was doing this sound

Echophenomena

Personal Perspective

Sounds, patterns, themes, feeling, movement and experiencing this world, people and place. I don’t use elaborate constructions but do and sense in order to perceive, understand an process I don’t live in a world of literalism nor logic as basis of “concrete” understanding – even now that form of and basis of understanding things, people, environments etc.

Strategies

  • Movies (focusing on the sounds, movements and expressions)
  • Music (tone, melody and rhyming)
  • Observing surroundings and contextualisation

Visual Agnosias

Personal Experience

I see faces (face blindness), bodies and visual environment as fragmented (object blindness) which also meant I could not see body language or facial expression , flat tursh and without depth or meaning (meaning blindness) not understanding self and other of what is around me for example it took me until 16 years old to understand that when I looked in the mirror firstly I was looking at myself (although I still get a level of disconnect) and that what “seems to be in front of me” is in reality behind me. My visual perceptual systems have layered effect on what I see and interpret.

Strategies

  • Sculpting objects in my space this would including licking, sniffing, mouthing as a way to externalise the object making it real for me this help me map out my space
  • Preference for having no shoes of socks on in my youth and around the house (patterning movements)
  • Sculpting faces remembering and connecting with someone by touching their face (I have only done that to 7 people in my lifetime to date)
  • Having objects on display not “hidden” because I don’t have visual memory so placement is important
  • Recognising people by sensing their patterns of movement and their voice
  • Tinted lenses help with sensory integration, moving in visual space, depth perception, body language, posture and confidence

Auditory Agnosias/Aphasia

Personal Perspective

Hearing sounds environmental with no on origin (auditory agnosias) hearing words as “sounds” (verbal auditory agnosia/receptive aphasia) missing tone, sarcasm, idioms not because of literalism but because of how much language I can process before I “hear” nothing.

Strategies

  • Telegraphic language and clipped words for the origins of environmental sounds (auditory agnosias)
  • Telegraphic and gestural language – being overt, pantomime like in expression, tone and melody
  • Music, rhythmic beats and movement help my brain “work”

Body Disconnection

Personal Perspective

Not being connected to my body means that pain is not recognised as well as a sense of my own body its inter-connectivity and its connection (as a whole form) around the world around me, I appeared odd to bouts of trauma having a tooth almost knocked out (an elbow to the mouth) was me with indifference to pain but shock and sadness at the blood (this element coming out of me) and a dislocated arm was met with anger and confusion because of the lack of movement not the pain. During times of mental illness I self-harmed both my arms not “knowing when to stop” and as a child I didn’t have knowledge of my fingers (my limbs also rolled into one another as if they didn’t exist).

Strategies

  • Pressure points around my body – bracelets on wrists, tight shoes, belt, jacket and/or shirt and long hair tied back (adding pressure getting a sense of my head)
  • As a young child smearing paint, moulding play dough and sifting sand (to get a sense of my “foreign fingers”)
  • Messy play as a child
  • Dental appointments (for me this is form of sensory integration and very relaxing) 🙂

Dissociative Disorders – Recognised in 2012/Revised 2014

Personal Perspective

In late infancy I started to dissociate as coping mechanism during these years and for many after taking myself away from both the situation and environment, persistent bullying during my educational and work years didn’t help the issue and I “created” personas (with strong reactionary personality profiles) to deal with this. I developed PTSD some years ago reliving an abusive incident that happened in my mid teenager years.

Strategies

  • Understanding that dissociation is on a spectrum from daydreaming to higher frequencies and detachment of you the person and/or the environment you are in.
  • Therapy that includes mapping memory, incidents, personas and coping mechanisms
  • Understanding trigger responses
  • Personal origins of dissociation

Mental Health

Personal Perspective

I started to develop OCD in my early teenager years this was persistent and would resulted in hand washing, placement moving and plug and switch checking, door-slamming and checking. Exposure anxiety was to do with an involuntary response to direct exposure interaction this would lead me to run away literally (or in my mind). Like many people on the spectrum I advocate the personhood first in the late 2000s I developed two distinct personality disorders (extreme versions of my “normalised” personality traits.)

Strategies

  • Origins of OCD – in my case this was fear of the house being burned down, burglary, germs and confirmation, and invasive illness that would lead to pain and/or death
  • Indirect confrontation for exposure anxiety talking away from me, talking about me but allowing me to hear it and integrate it without being in the mix
  • Knowing personality its traits and extremes (disordered versions of “normalised” versions/traits)

Learning Difficulties

Personal Perspective

Words swilling in my head I found them hard to process and strand together as words formed in my head over time I found it hard to translate them onto the page, the same with numbers which don’t swill in my head I found it hard to grasp numbers their meaning and their interpretation and their overall function.

Strategies

  • Clipped sentences – one stage at a time
  • Pens with extra grip (fine motor movements)
  • Alternate ways of writing
  • Function and context of what number “mean”

Auto-Immune

Candida Albicans

Personal Perspective

Many foods would make me fill ill both in body and mind causing me to have brain fog, lack concentration and further hinder my processing and integration of information from my surroundings, language and sounds.

Strategies

  • Understand foods, their content and what ingredients they have in them
  • Piecing together what foods are making you ill, unwell and have brain fog
  • Piecing together what foods you can have that don’t make you ill

Other

Personal Perspective

This can be related to anxiety it is the slow stripping of enamel making them look “smooth” and/or “chipped” in appearance I have this with many teeth on one side of mouth

Strategies

  • For me regular checks at the dentist and a gum guard at night has helped with issue
Dr Casanova

Dr Casanova

Genetics – Developmental Agnosias & Minicolumns

Some agnosias, sensory hypersensitivity, sensory integration disorders and many other conditions and syndrome can be passed down and can be seen as congenital in nature how the brain has grown with genetic encoding – Neurologist Dr Manuel Casanova calls this Minicolumns please take a look at this blog about his research and findings

AUTISM & MINICOLUMNS

PERSONAL WEBSITE

PERSONAL BLOG SITE

Donna Williams 2011

Donna Williams

Donna Williams – Autism as a “Fruit Salad”

Donna is quite correct in letting the world know that autism is a “clustering” of different conditions (both neurological and metabolic systems), syndromes, personhood and personality extremes, environment, mental health and learning styles. No one person with autism is the same and that means there is a high level of diversity to their which is good.

WHAT IS AUTISM? BLOG

AUTISM & ASPERGERS “FRUIT SALADS”

PERSONAL WEBSITE

Premature 1

Me Premature

Brain Injury Relates To My Autism Profile

Having brain injury at both has also had an impact on my autism presentation I was born premature and through placental abruption, cerebral hypoxia, silent stroke and damage the left hemisphere of the brain (which is related to aphasia, language processing, visual agnosias, simultagnosia, apraxias and visual spatial functioning).

HYPOXIA & BRAIN INJURY

I would say that these added factors has made my autism “Fruit Salad” more complex in nature and presentation – there are clearly other members of my are on the on the autism spectrum who have been diagnosed but their profiles are very different from mine in terms of presentation the mechanics.

Having an Autie Profile

Having an Autie profile in terms of presentation means I live in world (from a processing perspective) that is less literal, less logical and I use my sensory systems to work out the world I live in and I think it is important to know the mechanical differences between Autism and Asperger’s Syndrome and the people in between profiles of the two “Aspinauts” .

Every profile is unique in presentation so interventions, learning and communications will have to be person centred.

Personhood First? Why?

For all what is said and done I want to be known for my personhood first my autism comes along with me wherever I go, however it doesn’t define my being, it doesn’t make me what I am in totality (it affects how I perceive and processing the world). I love art, poetry, music, movies, fashion, drawing, being silly, bad jokes, dogs and want to know for those things first.

I hope this helps others. 🙂

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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Autism & A Difficult Birth – Cerebral Hypoxia, Silent Stroke, Middle & Posterior Arteries, Agnosias & Apraxias

Baby 1987 2

Overview

Note – This is a personal experiences of the trajectory of my Autism

I certainly had Cerebral Hypoxia as apart of a difficult birth I was born a month premature and through Caesarian Section . The Cerebral Arteries also had a part to play in this also.

Middle Cerebral Artery

Middle Cerebral Artery Syndrome

Which resulted in the following –

Posterior Cerebral Artery

Stroke Not not all these symptoms apply to me

Peripheral territory (Cortical branches) Not not all these symptoms apply to me

  • Homonymous hemianopia (often upper quadrantic): Calcarine cortex or optic radiation nearby.
  • Bilateral homonymous hemianopia, cortical blindness, awareness or denial of blindness; tactile naming, achromatopia (color blindness), failure to see to-and-fro movements, inability to perceive objects not centrally located, apraxia of ocular movements, inability to count or enumerate objects, tendency to run into things that the patient sees and tries to avoid: Bilateral occipital lobe with possibly the parietal lobe involved.
  • Verbal dyslexia without agraphia, color anomia: Dominant calcarine lesion and posterior part of corpus callosum.
  • Memory defect: Hippocampal lesion bilaterally or on the dominant side only.
  • Topographic disorientation and prosopagnosia: Usually with lesions of nondominant, calcarine, and lingual gyrus.
  • Simultanagnosia, hemivisual neglect: Dominant visual cortex, contralateral hemisphere.
  • Unformed visual hallucinations, peduncular hallucinosis, metamorphopsia, teleopsia, illusory visual spread, palinopsia, distortion of outlines, central photophobia: Calcarine cortex.
  • Complex hallucinations: Usually nondominant hemisphere.

Overview

Due to a silent stroke within the womb which is to do with

Additional injury to the left hemisphere to the such as

and the rest such as Social Social-Emotional Agnosia, Alexithymia for example where genetics.

Conclusion

It is important to know the trajectory and the why’s and the hows? of how someone has Autism, all this being said I will not let this DEFINE my PERSONHOOD but it does continue to explain why a process and communicate in a particular way. 🙂

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


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Autism, Auditory Agnosias, Words With No Pictures & Sounds With No Meaning

 

OVERVIEW

Note – All of People on the Autism Spectrum are Different this is topics that may relate to some people on the spectrum

Some people on Autism Spectrum have Auditory Agnosias as apart of their Autism this means they “hear” but don’t process with meaning, my Mum thought I was deaf as a child but is was to do with Auditory Processing.

I hope this helps others

1. A person Repeating sounds (DVDs, TV shows, Music etc) Phonic play, sensory play could be to do with this repeating sounds over and over to try to gain meaning, context and understanding.
2. May not respond when long litanies of verbal information is said to them – They have heard a lot of “sounds” rather than words and this may mean that you need to break down the information into smaller chunks.
3. Jumps at sounds in environment – If they don’t understand the origins of the sound tell them (using their communication profile) what is and where it is coming from.
4. Making up their own words for things, people, objects etc (pattern, theme and feel D.Williams) – If you live in world where language is jumbled to a high degree it would make sense that they may have their own words for things – I remember one person on the spectrum would call a type of biscuit “Maky” and a Yogurt “Yoshoo” some may replicate feelings of joy by making noises to reflect that (something that I still do when I stim).

Paul Isaacs 2014


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Pattern Theme & Feel – A World Before Interpretation D. Williams

Paul with Camel

Me with Camel

Pattern, Theme and Feel Language Vs Interpretive Language

From a personal perspective here were the developmental blockages in both visual and verbal association and meaning. So my primary was that of patterning, theming and feeling.

This meant that the visual world around me and word association of that world were disconnected, as I could not internally bridge together.

  1. Struggled with Word Association with Objects.
  2. Struggled with Word Association with People.
  3. Stuggled with Word Association with Places’.
  4. Exposure Anxiety Impacting on Ability to Learn Directly.
  5. Using Other Systems to Gain Association (touch, taste, smell, texture).
  6. Using Idiosyncratic Language to express.
  7. Using Sounds, Movements and Body to Express.

Residual Pattern, Theme & Feel?

I had speech and language delay and was “functionally non-verbal” I gained functional speech in between the ages of 7/8 years old, but I still live from a residual sense in a world of Pattern, Theme and Feel world in which I lose context, meaning and function from what I am seeing and/or hearing.

I had words WITHIN ME all the time – so my message is don’t assume that being externally non-verbal means no words within and no intelligence you’ll get it wrong.

Example Of Pattern, Theme & Feel

Speaking in sounds, movements, through the feel and theme of songs, jingles and advertisments was my first language. Affirmation was a structure that made sense, to use a jingle to affirm a feeling. So someone says, ‘we’re going’ out and I say ‘Gilligan’s Island’ to me this is an affirmation, just they are speaking interpretively and I’m speaking in theme and feel. Statements made sense because I was all self/no other, and all other/no self.

Donna Williams

I would make high-pitched sounds – and still do when go to my “primary communication” such as

  • “Eeeeee!!!” is “happy” which includes clapping and jumping
  • Low sounds “ugggg!!!” – Is Unhappy
  • And/or “clicking” sounds with my tongue – Represents Anxiety
  • Head hitting – Processing problems
  • Chest thumping – I would like come back to this world please
  • Head banging – I can’t cope I need some help
  • Sniffing, Licking, Tapping, Mouthing, Rubbing Surroundings – What are you?
  • Sculpting Faces – Who are you?
  • Tilting Head – I Remember You! And I like your company

Which sound and look like “nonsense” to others, but makes perfect sense to me. I thank my parents for seeing me as Paul and that my personhood.

Autie ? Or Aspie?

I’m very much an Autie in that respect from what is written above, there are others in my family who are Aspies and other people in families who are a mix “Aspinauts” as Donna Williams calls them.

Paul Isaacs 2014