Paul Isaacs' Blog

Autism from the inside


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“Doing” vs. “Being”

2017-03-29 17.18.04

 

“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


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

Sensory Explorer

Different Worlds – All Human

I think in the ever growing diversity of the distinct and person-centred presentations of autism it is important to know and acknowledge the crucial differences between Autism & Asperger’s Syndrome. Both are which are forms of autism but have different “mechanics” that drive them. I have Autism (as opposed to Asperger’s Syndrome).

I live in a world before the literal, words tumble in my mind into sounds I love tone, melody and beats they brings my world alive. I live in world world where visuals hold no significance fragmented and not in my “mind’s eye” and need to be touched in order to be “seen”.

I like elevated gesture and tone when people speak dead words wander alive into my mind and give them meaning and circumstance. Where a sense of “self” is not wanting to be exposed by the directness of people but at the same time I want to understand “other” even if I struggle to at times. I am empathic young man and this not through lack of care nor wanting. I care deeply.

Logic and literalism are not the name of the game for me to “decode” the word around me it’s sensing, patterning and feeling to gain an “understanding”. I am using a different part of my brain. So as with AS and Autism has many different presentations too this is mine. I think it is important to know differences it has helped me so much to know that.

Autism & Asperger’s Syndrome – Differences? Why?

Autism and Asperger’s Syndrome are both forms of autism – there have unique diverse characteristics in terms of “mechanics” on the surface one may say they look the same but is one delves deeper you realise that the what is going on may be different in terms either trajectory and/or origin. Everyone on the spectrum has a unique profile – Olga Bogdashina calls it autisms and Donna Williams calls it an autism fruit salad both are saying that it is person-centred, 3 Dimensional, diverse and different. Understanding the differences is just as beneficial in terms of education, learning, development, environment, identity, mental health, health systems and more

Donna Williams 2011‘Autism’, (by contrast with Asperger’s Syndrome), can be about the world before the ability to keep up with literal meaning. In this regard it can be a very different world to the world of interpretation and ‘meaning’.”

“I was asked what I thought the main different feature was between Autism and Asperger’s. I think you’ll maybe find in reading through the site on brain hemisphere specialisation that there are many Aspies who may be better at left brain stuff and many Auties who may be more right brain but not nearly recognised for the abilities they do have as much as they are recognised for the left-brain abilities they don’t have.”

©  Donna Williams

Autism Diverse Profiles – “A Stacking Of Pre-Existing Conditions” – “Aspinauts”

With that being said there are people how are dipping both toes – (developmentally and profile-wise) into both the Autism and Asperger’s Syndrome profiles, yes it is that fluid like a pot with many paints inside some.  Everyone has a story to tell.

Copyright D.Williams from her Blog

Differences between Aspergers and Autism ‘fruit salads’?

  • 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

Related Blogs on Subject 

Studies – Differences Between Asperger’s Syndrome & Autism

Why I have Autism And Not Asperger’s Syndrome?

Differences between Aspergers and Autism ‘fruit salads’? 

Paul Isaacs 2015


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In The Autism World It Is Always Best To Remember You Are A Person

Paul Big LegsI Am Sorry But I Must Say Something

The “culture” I was told that would support me
It doesn’t it has brought me sadness, it has made me shackled
It has not “set me free” I want to live a simple life
Where people are equal for that very reason with strife

Arguments a plunder my heart sinks and my nerves crack like thunder
As I feel my self esteem pulled down into the depths of the under
I ponder to myself what is it all about? Can’t people get along
Not one scream and not one shout, echoes all about

No more I say – I have given it my all I can be the person I was
His name was “Paul” and that is the some of it all
Hold hands and hearts and rejoice for we are not all one voice
But many are unsung, drowned out and ignored not the people’s choice

My heart fills with sunshine when I know that being here is no plight
Real friends and family give me my real joy, no more fights
A family member told me tenderly remember who you are that set me free
An onward path of freedom, hope and reflective clarity

Conclusion 

Thank you to you all I have decided not to over-invest in the autism “culture” or politics anymore. I have stated my opinions and listened to others that is great . My view still is we are all human and can learn from each other and in the context of autism that still applies no one person is the same, no one person can speak for all, but one can talk about their reality and if it helps someone great and if it something you cannot relate too or don’t experiences equally great. 🙂

Paul Isaacs 2015


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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