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Autism from the inside


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Autism and Anti- Bullying Week – Advocating & Acknowledging Different Autism “Fruit Salads”

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The word “autism” is a describing adjective of and “experience” and multi-layered condition of “conditions” a “fruit salad” as the late Donna Williams had noted from looking at her own autism and observation of others through her consultancy work.

So with that in mind what can bullying be down to? Many factors of course can be noted such as perceived vulnerability and/or threat, a noted and/or varied amount of insecurities within the bully themselves and of course any other contributing environmental factors that propel and/or ignore or not acknowledge that bullying is happening so what can be the contributing factors? Within in a person’s “autism fruit salad”?

Social emotional agnosia

This is to do with social perception so if someone doesn’t read body language, tone of voice or facial expression all they have left is facts this could lead the person to being picked on, left out and struggle to integrate into conversations between their peers and/or left overwhelmed.

Simultagnosia (Object blindness) & Prosopagnosia (Faceblindness)

The person may perceive things in pieces and not wholes making visual tracking of the environment difficult to manage meaning they are “lost” and struggle to find connections and visual coherence.

They may also have faceblindness as well meaning blindness meaning that bounding with the peoples via their peers faces is difficult. Leading to errors in communication and not knowing who people are, this may lead to teasing and/or bullying by their peers.

Semantic Agnosia (Meaning blindness)

Seventy percent of information is visual so what if a person on the spectrum is only using thirty percent information to perceive? They may use their hands, feet, tongue and body to externalise their surroundings in order to internalise, this includes objects and people.

As this system may not be fully understood by their peers around them it may lead to social misunderstandings, fear and/or exclusion due to a person being highly tactile.

Integration of “Self and Other”

Some people with autism may struggle with a “shared” sense of “social” the developmental underpinnings are to do with development of language and possibly having a more multi-tracked system of bringing together multiple forms of information at once.

So the person may only be able to do “all self no other” meaning the person may seem to not listen to others and project, and/or not project and not answer when it’s the other way round “all self no other” this could lead to teasing because of the lack of fluency between the “switching” by peers.

Meaning Deafness

Differing levels of language processing means that the person may not be able to keep track of what is being said, its relevance and or significance. If the person is resorted to just hearing “sounds” and not bridging the sounds into “meaning” the person may struggle with interpretive language.

Exposure Anxiety

EA was first described by Donna Williams in her book “Nobody Nowhere” in 1991 and later and hand book on the condition in 2003. EA creates involuntary diversion and retaliation responses when a feeling of “exposure” is triggered the nervous system then reactions with such responses as echolalic litanies (that go nowhere), spitting, hitting (others and/or themselves), swearing, running away and/or freezing (mutism).

People are directly confrontational in their language to one another with EA the person may benefit from an indirectly confrontational approach. Peers may be baffled on/or even confused by the differing responses this may lead to being teased, left out and picked on.

Other Things To Consider

  • Personality Types
  • Learning Styles/Variations
  • Dietary Disabilities
  • Mental Health Co-Conditions

Conclusion

If we are looking at advocacy we must first look at all perspectives of what is being experienced by the person on the autism spectrum and their peers and bringing a hopeful inclusion tailored by

  • Information sharing
  • Perspective taking
  • Healthy validation 
  • Inclusion

Advocacy of Autism as a “Fruit Salad”

By looking at the multifaceted nature of the word “autism” one must look beyond the stereotypes, beyond the rhetoric and once people open up to being healthily challenged, empowered and acknowledged then we can look forward to the future.

Links

Books

Nobody Nowhere D.Williams 1991

Exposure Anxiety D.Williams  2003

Autism: An Inside Out Approach D.Williams 1996

The Jumbled Jigsaw D.Williams 2005

Living Through The Haze P.Isaacs 2nd Edition 2016

Understanding & Supporting Autistic Students In Specialised Schools P.Isaacs 2013

Blogs

What is Autism? D.Williams 2014

Differences Between Aspergers and Autism “Fruit Salads D.Williams 2012

There Are Two Types of “Social Emotional Agnosia P.lsaacs 2018

Visual Perceptual Disorders In Children With Autism D.Williams 2011

Tinted Lenses, Visual Perceptual Disorders and Bridging The Gap Between “Non-Visual and Visual Worlds P.Isaacs 2017

Was Michael Jackson autistic or one of the most famous people with Exposure Anxiety? D.Williams 2009 

Link to Original Article Anna Kennedy Online

Paul Isaacs 2018


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Autism – The Crossover from “Sensing” to “Meaning”

Sensing vs Interpretation 2918 image

 

Note this is from a personal perspective

Talking yesterday to friend about speech and language I thought it was interesting to see progression the inner feelings of someone who has gone through significant challenges in receptive and expressive language. I can remember a whole host of disconnected emotions that came flooding towards my person when speech slowly developed in terms of expression, a whirl wind of patterns, phonics and placements in my collective unglued memory and figured out by the ages of eight a system of external placement, phonic placement and movement sequences that helped me connect with the outer world around me.

However what was challenging from both emotional and integration point of view was taking a step away from the system of “sensing” (Donna Wiliiams 1998) a state of pre-consciousness, patterns, thematics and “feelings” that answered and questioned, that supplied and didn’t demand, that sang but didn’t shout, that gave and took in relevance of the moment it was captured. A place which “being” was the name of the game and “storing information” was redundant and futile.

It was a world in which in my own way I had found connects through external sensory modulation as explained so switching my “systems” was much a painful and frustrating experience as I can ever remember my connected chatter annoyed and scared me and the connected words would then bring upon the attention of connected response to which I was not readily to respond.

So was it like losing a friend well at that point yes I was making subtle yet significant transition into the world of interpretation, cladding, hierarchy and applied meaning for someone who was profoundly meaning deaf and meaning blind to those concepts it certainly makes sense why I wanted to “go back” into a world of “sensing” it was in reflection both a prison and sanctuary, solitude and disarray and home and wilderness all at once.

We (human beings) all come from the system of “sensing” however my personal experience is being “there” for a longer allotted period and many ways I am still there with reflective gaining and personal developmental progressions that have come with it.

Paul Isaacs 2018


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Egotisms vs. “Developemtnal Egocentrisms” – Understanding “Other Through Self” In Autism

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Note this is from a personal perspective

To be a egotist one must have a self-inflated sense of “self” (the ego) in which everything has to be about them, for them and with them you could construed this a narcissism and unhealthy relationship with ego and the ability to get “other” as necessary part of life. This doesn’t mean that people with autism cannot be egotists by the way.

Oxford Living Definition

1.1 Centred in or arising from a person’s own individual existence or perspective.

‘Egocentric spatial perception’

“Developmental” Egocentrism

This on the “surface” in its multiple forms see like the “same” if a  person taps on the surface this could be as so but what is the person is trying (unconsciously in some cases) to understand other?

Faceblindness and Mirrors

It took me years up to the age of 16 years to realise that the “friend” that followed me into the bathroom and public toilets was “me” I sought a lot of comfort from “him” as I stared into the mirror I wasn’t aware that it was “self” so I played with the “friend” pulling faces, gestures, expression contorting my features etc. Transfixed I would struggled to perceive that was in the mirror was behind “me” leaning the toward the mirror I would try to pick things out of it not understanding the concept of “mirror” is reflection one’s own physical form.

Meaning Deafness and Echolalia

I would have contradictory experience with being profoundly meaning deaf all around me was fragmented people making “soundscapes” to one another this would both intrigue, annoy and frightening me depending on the context, the people and the situation. Listening to jingles, TV shows and VHS’ was indirectly and opening for “other” I could follow the patterns of the program endlessly as they were in the end a linear form of repetition of sounds, colours and movements.

Visual perception and Making Connections

Being both meaning blind and object blind meant my visual world was redundant and I was only using up to 30 percent of information (taking into account visual perception is around 70 percent of information). I would “live” in a system of sensing (before typical interpretations and applied meaning) for connected experiences they had to come from other senses, touch, taste, smell and movement gave “life” to my physical environment. I would connect with “people” in a fragmented manner smell, touch, patterns of movement etc.

Using One’s Own “System”

I have no doubt in  reflection on my experiences that I have made progression in many areas however the point I am trying to make is the context of autism is that “developmental egocentric systems” in my case were used as “bridge” unconsciously or otherwise understand “other”. The internal struggle was the blockages developmentally and neurologically to extract my own though systems, interpretive systems and inner/outer dialogue of coherence at time where I could not get a shared “sense of social”.

Paul Isaacs 2018


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“Doing” vs. “Being”

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“Doing” in its extreme form can consist of over-thinking, over worrying, over-analysing losing grounded functioning and not being pre-occupied with too many things at once denying at times what is right in front of you tentative steps to be taken in the overburdens mind that consist of unwanted thoughts that sometimes never let on to being silenced. I am sure that that wanting to be a “be-er” may consist of flattening thoughts.

“Being” in its extreme form can be pre-occupied with the moment feelings of floating, connection to the situation with yourself, having an inner world to eagerly retreat to that consists of many colours, patterns, shapes and shine being jolted into to “doing” and conscious thought may well be difficult but can be achieved.

None of these things are distraction or detraction of cognitive skills although quirky and paradox like presentations may resume.

Paul Isaacs 2017


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Autism Interview #8: Paul Isaacs on Personhood and “Autistic Identity”

Jenna GensicMany Thanks to Jenna Gensic for conducting this interview with me and others – please checkout Jenna’s page Learn From Autistics -Connecting Parents and Caregivers with Autistic Voices

Paul Isaacs is an autism advocate, trainer, and public speaker from England. He says that public speaking about his experiences and the experiences of others has helped him find his voice and develop a true skill. He always emphasizes the positive aspects of how life can be lived with autism. He uses the acronym PEC to describe the qualities people who work with autism should have: Positivity, Empathy, and Compassion. He is also a published author and blogs at Autism from the Inside.
In your most recent blog post, you discussed your dislike of the tendency to attribute someone’s neurology to their entire identity or personhood. However, there are many other autistic self-advocates who insist that this premise is important for improving the treatment of people with disabilities. What advice do you have for parents who are trying to help empower their children with the skills and confidence to be successful and are receiving conflicting information from autistic self-advocates in this area?

I would say that being born a human being first should be seen. Every person on this planet is a human being regardless of ability, disability, race and gender. Understanding the “autism” is very person specific, environmentally specific and situational specific – these different “pieces” which make up the autism have their own unique presentation, and also the way in which the person is affected will differ not only due to the “pieces” and their trajectory, but what the “pieces” are in the first place. It is like being a detective, searching out what works and what doesn’t are both equally important.

With regards to my identity, I see myself as a person and a part of humanity, so therefore I am a person first – personally, my autism affects my visual and auditory perception, language processing, cognitive processing, learning difficulties, etc, but these are PART of me, not the totality of my BEING .

I have personality traits (which everybody has regardless of autism or not) which make me happy, silly, draw, sketch, meet up with people, etc. These are human things which I value. I am not ashamed of my autism, but I don’t glamourise it either. I keep a balanced, open-mind. I can only speak for myself (how autism affects me). No one can speak for ALL, so, in that sense, people can learn from different perspectives and realities.

You were diagnosed at a relatively late age even though you exhibited clear signs of autism when you were young. What do you think was the main reason for this delay? Have you seen evidence of this still occurring today or has autism awareness reached new heights such that this sort of situation will likely never happen again?
I was born in 1986 and although there were specialist autism bases around my area, my autism wasn’t picked up due to circumstantial insistences. I was seen by an educational psychologist in 1993 and was seen by a child and adolescent mental health team in 1996 and an adult mental health services in 2007 and 2008 before I was formally diagnosed in 2010.
I would say it was not anybody’s fault as no information was given to my parents during my time in mainstream education. When I was in secondary school (I gained functional speech between the ages of 7/8), there where several meetings with my head, as well as the latter years of primary school. However, there was an autism base at the secondary school, and I would speak with the students and even attend lunchtime meetings and eat with them.
My Mum though I was solely brain damaged due to the placental abruption and lack of oxygen when I was born and that was the only name she had for my “behaviours,” but she had no doubt that I was a person before any of these difficulties.
What are you asked to speak about most often?

Sensory perceptional and language processing seems to be the one I get asked to do; however, on my booking page I have slowly built up other areas and topics.

What mistakes do autism advocates make?

Getting over-invested in the autism “politics” this where “identity” can become in crisis, and mental health can breakdown. I am talking through observations and also experiencing it myself – Donna Williams an advocate, speaker, consultant and author on the spectrum gave me some sage advice, and that is to take a step back, regain healthy boundaries, find yourself and do socially binding things.

Autism politics can get rather unhealthy to be a part of, there can be militancy by people on an off the autism spectrum that can be rather distressing and uncomfortable to be a part of. My personal opinion is that everybody has a story and that their realities are just as valid as anyone else’s – there should not be a single representation, but a more egalitarian outlook where all person hoods and realities are taken into account. It is my opinion that autism isn’t culture, but a “culture” has been created around autism.

Describe some of the factors that have contributed to the personal and professional success you have achieved today.

My parents have helped me a lot over the years on both a personal and professional level – it started with boundaries, right and wrong, having a moral compass, seeing “failure” as normal and therefore accepted, seeing me as “Paul” first, a boy, a teenager, an adult, and letting me experience the outside world and all that it entails.

What are some of the strengths and challenges you’ve experienced as a result of being on the spectrum?

I still have problems with language processing, visual perception (faces, objects, people), visual distortions (foreground, background), under-processing on my right side (motor and visual), sensory integration, movement, processing “self” and “other” – being mono-tracked and seeing the significance of what is being said and what is happening (life skills have helped so much in this area) and learning difficulties.

I don’t know if my strengths are autie-specific. I do enjoy writing poetry, creating abstract artwork, and writing books. I like creating things, watching movies, and I also like alternate fashion.

What advice do you have for parents of autistic children who respect the knowledge and experience of autistic self-advocates and are looking for guidance in helping their children develop their potentials?

Go with the child on their journey. It will be different for each person – see them as your child first, understand the pieces of their “autism,” and work from there. Let the child experience life.

Jenna Gensic & Paul Isaacs 2015


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Can Over Investing (Directly or Indirectly) In “Autism Identity” Be Damaging?

Me and Dad“AUTISM” & “ASPERGER’S” ARE THEY ALL OF A PERSON? 

In the context of “Autism” or “Asperger’s” it is not “the person” it is the way the person processes information, cognitive, perceptual, language processing, gut and auto-immune issues, learning disabilities, learning difficulties etc – that isn’t “the person” it is how they process information, if someone without autism was hypothetically diagnosed “non-autism syndrome”  (I dislike the word “neurotypical” for the reasons of reverse prejudice and that fact it doesn’t exist not one person fits in a tidy demographic) do you think they would say that is “all of me”, “all of my being”, “all of my soul” maybe not for the personality traits which get lost in the the self (either projected on to the person or the person themselves) through seeing the diagnosis as “all” not “part of” I find this rather sad.

DID A LATE DIAGNOSIS HELP ME GAIN ME SENSE OF “ME”?

As a person diagnosed in my my late twenties maybe indirectly that has helped me see myself living as person not a “label” that to me is far more freeing I am happy go lucky, idiosyncratic, mercurial, solitary, creative, poetic, silly, have a laugh, like nice meals and good company the list goes on I am a “human” and there is great empowerment in reminding ANYBODY (regardless of disability or otherwise) that they are human/person first.

PERSONALITY TYPES 

I have noted some personality types I have regardless of being on the autism spectrum or not all  human beings have differing personality types.

“ONE SIZE FITS ALL” & POPULAR STEREOTYPES 

I also question the use of a “one size fits all demographic” if you think about it that makes no sense at all how can a person with autism be like ever other person with autism? Think the same? Process things same etc. I think it is about looking at the specifics and the mechanics not the stereotypes or generalisations that are about (all people with autism created things that progressed humanity for example). How about socially binding things? The real world with real people in it? How about looking at that instead even if a person on spectrum did create something unique shouldn’t the credit be on the creation not just the that fact that the person has autism? If anybody else had created something wouldn’t you do the same thing?

People get left out, feel more different than they may have initially felt, parents maybe left confused also, its time to strip away the politics and if one is going to be any help all lets focus of the what works. As a point of the reflection the baby in the top right hand corner what do you see? Do you see a baby? a little person/human-being?

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