Paul Isaacs' Blog

Autism from the inside


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Think For A Moment? Could Life Be More Balanced?

What is life? But a matter of objective? subjective? Or maybe something more deeper? I wonder is life really meant to be complex? Or is that the way in which people perceive and react to one another that makes it so? Maybe barriers have blinded our minds to make quick thoughts about islands of people we live amongst? People don’t know people but are obliged to talk about them with deep motives, follow your heart not what you see on news or read in the newspaper.

Humans don’t need to be cynical, edged with tyranny. Yes we too profoundly hold dear idols in both statue and human form who confirm and are to do with such things look back in history, look to the now for is woven the future.

Paul Isaacs 2016

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The “Autistic Identity” Phenomena

When I was diagnosed was autism in 2010 – I wasn’t aware of such an “identity” because to honest I was never in that “world” at all. I often wonder that despite the obvious difficulties I had during my development and environment the one thing that I had going for me was the simple “human-hood” which was conveyed by the my parents as a way of connecting with me.

I don’t consider this perception from my parents to be “unique”, “specialised” or “autistic-specific” in its intentions nor in its thinking at the time (although it could have well be seen as that on reflection).

I wasn’t born with a “label”

In many of my blogs I have spoken about the balance of being seen as “human”, “person” and “being” first and as I have been in this “world” for over five years. I have seen the firm importance of seeing people as “people”, by not defining their whole “soul”, “identity”, “being” by their label (or labels) nor having it being overtly defined for them so there is nothing else left.

“Labels” are an adjective not an overall definition

If everybody was to be defined by solely by a “label” wouldn’t it be restrictive, suffocating and narrowing your bandwidth of experiences, perceptions, thoughts and feelings?

Not towing line meant I could see “myself”

I am glad that I haven’t towed the line into the realms of stereotypes, group think, confirmation bias and all the militancy that goes with it. I am glad that my parents after I was diagnosed said that I am still “Paul” regardless. I am glad that I see the importance of seeing somone as a person first. I am glad that I have other interests that take up my time productively such as drawing, poetry, walks in the countryside and meeting up with friends.

People are people regardless

I am free to think and feel and have a more refined outlook that I am firstly and thankfully not being the centre of the universe, not the big answer all  to the questions, not speaking for “all” (because no one can) and have a egalitarian view that all people are of equal worth in this world no more and certainly no less.

Paul Isaacs 2016


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“Autism” what does it mean?

Note this is froDad and I Dancingm a personal perspective

When I was diagnosed with autism in 2010 one of the first things that I was told is that was still a “person” even if I didn’t the mechanics and/or “pieces” of my autism that nevertheless was a sage piece of advice that has stayed with me on a personal and professional level.

“Autism” is different for each person so here is a breakdown of the “mechanics”

  • Emotional perception (alexithymia) problems with recognising and verbalising emotional states.
  • Visual perception (visual agnosias) problems with perceiving faces, objects, reading words, colour and “sorting out my visual field into a “whole”.
  • Language processing (receptive aphasia) problems with processing and interpreting “meaning” and “significance” from language.
  • Auditory processing (auditory agnosias) problems with organising the origins of sounds.
  • Body perception (body agnosias and hemiplegia) problems with processing and perception on the right side of my body which affects coordination, problems with recognising pain, hunger and thirst.
  • Body and Movement (visuospatial dysgnosia) left-right disorientation.
  • Light Sensitivity (sensory integration disorder and related learning difficulties) problems with light creating distortions as well as dyslexia and dyscalculia.
  • “self” and “other” processing simultaneous information which requires this can be difficult.
  • Mental health and personality disorders.

 

PERSONALITY TYPES

I have four main personality types which intermingle with each these are human in terms of presentation but will differ form person to person – human beings under stress may develop “disordered” versions of these types affecting social and personal perception, mood management and interpersonal relationships and friendships.

  1. Idiosyncratic
  2. Mercurial
  3. Self-Sacrificing
  4. Serious  

 

NOT RELATING TO “AUTISTIC IDENTITY/IDENTITY-FIRST LANGUAGE 

I do not see my whole being as “autism” nor define myself by it. I see it apart of me, in my case the pieces are emotional perception, visual perception, language perception, auditory perception,
body perception, light sensitivity, information processing and learning difficulties
 with associated mood disorders, exposure anxiety, somatisation disorder, dissociation and personality disorders but they are not a total nor finite definition of my being. I can only speak from my perspective and that is all.

I am “Paul” first with the all the positives and negatives that come with it the likes, dislikes, regrets, dreams and the sense of just “being”. I shall never adhere to the “club” there is to much militancy, over-investing and politics. I see myself as apart of the human race – no more, no less, no more worthy, no less worthy just a person like one of the billions of people on the planet everyone has a story to tell don’t they.  😉

Paul Isaacs 2016


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Reflections for the New Year and Life

IMAG0272I hope all have a grateful New Year and are ready to spread their wings into different ventures and pathways, you may have to go down a different path and/or continue down the same one until the cross-roads of life unfold you may have do things that are uncomfortable but necessary you may need to do things that continue to give you joy and stability – burning bridges with the philosophy that isn’t shallow but needed, contextual and logical.

Keeping and valuing good friends and loved ones whom value you as you do them with the veneer less intentions and faces with what you see is what you get none too one-sided or over invested but just balanced – this is hopefully something that is learned to me in the coming year to strive to me more balanced, have good emotional management, to not be a doormat or be used by untrustworthy agendas and shallow people he thing more about you can do for them a less about the person you are, to value real friend and companionship this will not just be for 2016 but something that I can work on in the ages.

Paul Isaacs 2016


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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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Supermarkets – Autism, Sensory Perception, Impulse Control & Alexithymia

Note this is going to be from a personal perspective of how this affects me.

For me supermarkets are very much I love/hate relationship they are full of things to do primarily shopping for goods that you need for your home or otherwise however the way in which my autism profile works there are issues related to sensory integration, sensory perception, impulse control and emotional recognition.

Sensory Perceptional Issues

In previous posts I have documented how my fragmented vision affects the way in which I “see” and “process” the world around me this includes of course environments in which I am being bombarded by stimuli but one of the things I have to put one hold is the want to touch and experience everything I can within the store – this is not relate to the literal aspect of the what the object is but how it may sound, smell, feel etc, plus getting visual information for me alone is redundant so the irony here is that touch gives me far more “meaning.” than just looking.

Impulse Control Disorder (related to sensory perception)

This impulsivity can include getting “chemical highs” from objects, shimmers, shines, textures, noises, sounds and smells these in some contexts can be very distressing for me but in other contexts they can be alluring and very much a “want” of course a “need” is very different from a “want”.

Alexithymia – Could that be another factor?

Processing incoming emotions (and naming them) for me takes about 24 hours in general and longer depending on the situation. I wonder because I am getting a “bodily high” that is enough for me to get a “feeling” that comes from the outside in spurring on the impulsive want that then relates to impulse control?

Getting grounded

What I have done over the years has been able to self-regulate on a level where even though those a initial bursts may happen I am able to keep on task and do what I have to do.
My tinted lenses help not only with piecing the world together but filtering the lights and giving me clarity.

Headphones and music also help me as this keeps me on topic.
By sorting out what the relevant factors are (and just as importantly what aren’t) it gives and foundation not only of empowerment and ownership for th person but a confidence can challenge themselves in otherwise difficult situations.

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