Paul Isaacs' Blog

Autism from the inside


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Autism & What About Humanity? And Connectivity?

Family Christmas Early 90s

Dad, Gramp & Me Just “Being”

Autism it just “is” when I go out in the world the biggest thing for me is to be apart of humanity, people, beings – so when I go down the street what do you “see” and what do.

I “see” – “Autism” is a name for a clustering of pre-existing conditions which I have which for me are (PERCEPTUAL, LANGUAGE EXPRESSION, AUDITORY, LANGUAGE RECEPTION, BRAIN INJURY, MOVEMENT, COGNITION) this is PERSONAL to me but they affect how I process things/understand things – they do not define my TOTALITY nor are they “ME” I am artistic, idiosyncratic, emotive, emotional, creative, solitary, serious, funny, silly etc those things are what is called shared things with other people (regardless of any disability or not).

Autism is something I am neither proud or nor ashamed of it just “is” I was born a person so I would rather people see me as a person (as everyone else should be) not to be swept up by stereotypes, or militancy or “them” and “us” perceptions, but be seen as person. I am not a an “object” to be observed nor am I a “genius” to be revered – so if we look at being balanced about things then we open up more doors then close them. I am no “better” nor “worse”. We (as human beings) are all equal. 

Paul Isaacs 2015

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

Baby Fisted Hands

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

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

Brain Damage/Injury

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

A Human-Being – Everyone is Equal 

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

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

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

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

Paul Isaacs 2015


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Person First Language – Why It Is Of Value For Me

Premature 1Why I am A Person With Autism

Born a person first a little human being

Little “Paul” is what people were seeing

As I grew my personhood shone. so freeing

Something that all people are being.

My Autism is apart of me it doesn’t define the whole

I want be seen as more a noble quest my ultimate goal

Not everything is about my “condition” that takes its toll

Open your eyes ever look deeper into my soul

I am an artist I like to draw – my quirky imagination sores

I am a poet I like to write – my words are given clarity and flight

My speech, vision and language are at times fragmented

But this doesn’t mean I am eternally demented

See the person, their eager smile be with them for but a while

Likes and dislikes, wants and the needs these are but human deeds

want people with open eyes too see I know that path fills with glee

 

That it is one’s personhood that connects you and me

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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Being Balanced When Talking About Autism

“To be honest about something is the best way when I talk about autism in context I don’t glamorise nor do I demonise I stay moderate and try to stay real, true and balanced about this very vast subject. I speak from my own perspective and don’t speak for ALL (only my profile) and learn from others profiles that’s how one learns.”

Paul Isaacs 2014


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Phoebe Caldwell – Intensive Interaction And Diverse Communication Profiles Within Autism

As a person on the spectrum I am a firm believer that whenever you are on the the spectrum you are on the spectrum you have a right to have a meaningful and productive life.

Phoebe Caldwell Copyright P.Caldwell

Phoebe Caldwell

Phoebe Caldwell

Tapping into the communication profile of the person is key and she looks at all aspects of the profile

  • Sensory Integration Disorder
  • Receptive and Expressive Language (Aphasia)
  • Telegraphic Speech
  • Gestural Language
  • Rhythm, Pitch and Voice Modulation
  • Touch (if a preference)
  • Exposure Anxiety & Emotional Regulation
  • Neurological Pain
  • Body Agnosias
  • Person’s Environment

Communication – Thinking Of The Person’s Sensory Perceptions 

Phoebe looks into the diversity of these communication issues from person to person as the brain’s of these person’s has different things going on, making connections in ways of relevance to that person, ways of meaning to that person it brings results of happiness, lowering anxiety and integration which is both positive and hopeful. I believe that rigid “models of communication” that sold as the way of communicating with a person with autism are wrong because it’s all down to the uniqueness of the person’s profile in other words there is no one way.

Pattern, Theme & Feel – Donna Williams

A world before typical interpretive language could mean that person has created their own language to try and integrate with the world around them, I know my early years I did and it was seen as “gibberish”, “mutterings” but I was trying in a world of visual and auditory distortion to reach out.

  • “Eeeeee!!!” is “happy” which includes clapping and jumpingBubbles
    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

I still find language difficult but I try my best – a lot what Phoebe does in terms of gestural language and telegraphic speech are from a personal perspective with beneficial for me to get meaning.

Conclusion 

Phoebe has an excellent presentation style and projects with passion her over 40 years experience with working with adults on the autism spectrum, she sees the people she works with as people and person’s first which is refreshing to hear and it shows in her work and the people she has helped of the many years.

Paul Isaacs 2014

PHOEBE’S WEBSITE

INTENSIVE INTERACTION


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

Fruit Salad Analogy Copyright D.Williams

Fruit Salad Analogy Copyright D.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

BewdjULCYAAzv0H 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 “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 Adult with Autism 2014