Paul Isaacs' Blog

Autism from the inside


In The Last Ten Years

Looking Back

The last ten years have been very intersting in 2009 I was recently out of the Mental Health Services with two personality disorders, auditory hallucinations and psychosis, I was self harming and attempted suicide.

Early Infancy

By clinical observations I was serverely autistic, I was profoundly meaning deaf, meaning blind, body disconnected, oral apraxic and didn’t gain functional speech till later in infancy. I was and am thankful to my parents who had no means of any interventions (in the late 80s many were dated).

In 2010 I was diagnosed with autism and OCD and my speaking career started off in which I went freelance in 2015.

“Standards of Success”

By “non-autistic” standards I “made it” in many ways I suppose. I was considered “retarded” by the village I lived in and was targeted and bullied by the children and adults till my mid-teens.

Education

I was targeted and bullied at school from primary to secondary when I finally left in 2002 (with an isolated incident of sexual abuse) in the latter.

I went on to do an ICT coursecfor a year and had the greatest experience of my life from and educational perspective it proved I could be educated.

Bullying and Employment

The bullying in employment started in 2002/3 so multiple jobs were lost and gained.

I was thankful to the autism base in Chinnor in around 2008/9 for supporting me as well as the start of my speaking career in 2010. Over that period of time I wrote and authored 5 books.

The bullying in employment stopped in 2015 when I went freelance and started working for My World.

This is longest time in employment that I have been safe, comfortable and seen as a part of the team.

I Am A Person-First

People wonder why I use “person-first language” this is why because I do not want to be defined by a “label”. I do not like serperatist “them and us, us and them” rhetoric we (as beings) are all a part of the human race

From 2013 onwards to now I am pleased to have met some of the most wonderful and friendly people in both my personal and professional life.

Love and Life

I lost my Gramp in March 2017 due to metatastic prostate cancer, one of my dearest friends and mentors Polly (Donna Williams) in April that year also to metatastic breast cancer and my Nan in December 2019 due to pneumonia. I shall always cherish my fondest memories of them.

I almost lost my Dad in 2011 due to chronic lymphocytic leukemia and then meningitis in 2018 as well as my Mum in May 2019 due to a complex thrombotic disease.

Creative Mindsets

I have had great fun dabbling in art, poetry and what I call “insta-modelling” in which to my surprise and support from my friends up north has been rather enjoyable!

I have been interested in androgyny for many years prior and have been told I look as such.

One of things I can do well is pluck my eyebrows which I consider an achievement as much as anything else! 😉

Conclusion

So look beyond what is here, look beyond what is heard, what is seen, what is touched and sense people because every cherished little person is special and of equal valor and humility in this world.

Paul Isaacs 2020


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What Are “You”?

I often teeter on the wonderance of what it means to be a brain with a nervous system?

Why I am here? Why I am attuned and attached to an aging body? Why do I think, act, behave and react the way I do?

People are sometimes scared of their own minds and thought processes seeing them as a darkly moulded appendage that is seperate from one’s self an inner coil of contradictory truths.

As I know at this point I couldn’t be more happier being my own best friend, ally and comfort in times of earthly solace to do the right things. I hold in to truths even metaphorical ones and friends of friends a like flow into our pathly existences once again.

Paul Isaacs 2019


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Be The Best Version Of Yourself

In a sometimes mind boggling world of shallow, narrow cucumber minded folk. Remember to be the person you want to be, when you close your eyes, wake up, make breakfast and go to work.

Short and timely travels within a flesh vessel of chemicals, minerals, fluids and too many a complication to bubble upon the cooking fat of existence.

I do no t adhere to clubs of a singular mentality for sometimes a heard can lead the blinkered people towards darkly paths of anxiety and self recriminations.

So I say crumble the falsehoods of separation, for they create longer bridges of acceptance to cross, know you are one person with the ability of helpfulness to share love upon everyone.

Paul Isaacs 2019


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Daisy King, Kabuki Syndrome and Autism

Daisy Image 2018

I first met the endearing Daisy King when I done consultancy work at The King’s home about two years ago, we have since become friends.

Daisy King is in the later years of teenage hood and is very charming, warming and loving to the people she meets. She does not have verbal speech however she shows her wants and needs through tonal modulation, directing the person, objects of reference and gesture.

She has low muscle tone (which is a feature of the syndrome) but that doesn’t stop her from wanting to get around to meet people, play with them or go for a walk with her friends and family, she has problems with feeding but has a tremendous appetite, she has her person care needs met by her family and big sister Rosie. She is loved and shows it in a give and take fashion.

Sensory Perception, Meaning Blindness (Semantic Agnosia)

I was 19 when my ex-shrink declared from across the room, ‘You have agnosia’. We’d evolved into a friendship thing and I guess in my years as her patient she didn’t have a shelf of objects in her room so had never really seen me handle them. But here I was with a rubber thingy in my fingers upon which was balances a hollow tube like structure which made a good sound when tapped. I had suddenly declared ‘this is a baby’s bottle’… probably fairly obvious to most given this woman had a toddler, but to me this mysterious structure was something of unchartered territory though it’s likely I’d encountered hundreds of them in my 19 years of life by that time, let alone grown up with one. But that’s visual agnosia for ya (semantic agnosia).

Donna Williams

Daisy seems to be meaning blind so externally explores around her liking to connect people through touch, pressure. If one doesn’t have a level of visual “recall” it would make sense that she explores people and objects in this fashion to get a “reality” other than “seeing” despite her eyes working.

Sensory Perception, Object Blindness (Simlutagnosia)

As a person who grew up with inability to simultaneously process my visual world, leaving me seeing everything bit by bit, context blind, face blind, often also semi object blind, I feel visual perceptual disorders played a significant role in my learning, development and inability to also gain receptive language processing or functional speech until late childhood. But what weight might visual perceptual disorders alone play in the development of someone’s autism?

Donna Williams

When your visual world is so distorted, lacking interpretive meaning and “fragmented” Daisy shows many clever signs of trying to get coherence from the visual world around her she will twiddle, spin and balance objects creating movement for people with an array of visual perceptual disorders objects may be “dead” when there is no movement and/or sound present.

She also at times looks out the corner of her eyes using peripheral vision because it is easier to process and percieve rather than central vision which causes the distortion.

Daisy and Paul 2018

The “System of Sensing”

The realm of sensing is the place we have all come from: that world before mind was thought of as ‘me, before body became ‘mine’, that time when we ‘knew’ because we FELT the nature of things, the feel of them- when we sensed. This was before we had learned to interpret and see the world not as it was but through our concepts and ideas of what it was.

Donna Williams

When someone is in the system it often gets confused (because of the external “behaviours” and presentation) as someone who has a “low intellect” I challenge this because if the system is still present that means that the person is taking in the information around them but is “feeling” rather than putting it into other more “interpretive” framework.

Daisy seems to live very much in this system in terms of her interpersonal relationships with her family and friends. She is fun, cheeky, outgoing and shares her Mum’s idiosyncratic personality and mercurial personality.

In the end she is a human being living and loving life. 🙂

Paul Isaacs 2018


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Is Stereotyping & Glamorising Autism A Dangerous Path to Tread? Balance Is The Way Forward

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I think of Polly a lot and as it is coming near to a year since she has passed and autism awareness month. I think of the valuable and human lessons she taught me and other advocates who keenly listened and understood not only her perspective on the matter but her overall out look and ethos.

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Autistic Person? Or Person With Autism?

I think when I was born and all that was around me that I wasn’t fully aware of yet, the people, trees, the buildings, the modern world, the natural world. I think of cladding and chosen identities and when comes to defining a person by one aspect of themselves. I often wonder and worry about what that means. If we see everything as the “autism” from the moment one gets up to the moment one goes to bed what is left?

Cannot we see the other aspects the mould a person such as the environment they live in? The personality types they have? The mental health conditions? Their sense of identity? (other than being “autistic”) And their learning styles?

If we are addressing “autism” surely we should be looking at the bigger picture rather than tired and easily digested rhetoric such as “all autistic’s are logical, literal thinkers” or “all autistic’s have special interests” not taking into account the broader perspective on neurological and biological aspects, the social emotional aspects and very specific wants and needs of that person themselves and/or their families and loved ones.

An “Autistic Mind”? Or a “Human Mind? 

Last time I checked there is no such thing as a mind cannot have be clear cut as “autistic” and “non-autistic” many aspects to do with information processing can have an impact on presentation. Such as a person with social-emotional agnosia not being able to read body language, facial expression and/or tone of voice, aphasia and being able to express and/or retrieve words and apraxia with living in a body that doesn’t obey its commands of the “owner”.

Personality types in human beings regardless of autism effect the presentation of the person such as being solitary and a preference for being alone, idiosyncratic and not confirming to the cultural and social expectations and conscientious and wanting logic, linear thought and perfection to name but a few.

Balance

If we ditch the rhetoric, the cash-cows, the money makers, the politics and get to what is “real” then that is the greatest and most honest foundation of them all. True empowerment is knowing what something is and working from there not making things up to suit the make-shift package you want to “sell” to people.  I think there is nothing wrong with showing the example of just “getting on with one’s life” as the greatest one.

I am not famous, “special” or “unique” words like that scare me. It puts me on some invisible pedestal that quite rightly I don’t deserve nor want to be on. 😉

Paul Isaacs 2018


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Autism As A Describer Not a Definer – Combating “Label Lust” and “Overidentification”

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I have been an autism and advocate for over seven years I have seen many autism “fruit salads” in my time some people with auto-immune problems, other with complex mental health issues, others who see their autism as a curse, others who see their autism as special and unique, others who identify as their whole being as “autistic” others who don’t. I have seen militancy and anger towards people who go against old rhetoric who propose realism as opposed to glamorisation, people should allowed to give their own perspective from different angles, perspectives and offering multiple realities.

Differing Profiles

With all the the “pieces” I describe in my training sessions and/or presentations are “describing” words the reality for that person will differ from “piece to piece” however that “piece” will have its own name and describing it allows the people understand a fragment of it albeit from a personal and/or observational perspective. Its hard to get the balance right but it is worth it.

Definition vs Describing vs Identification

It isn’t defining people by the labels offered which is from an educational, resource perspective and even a self-reflective perspective. It is offering a window of what could be going on. I am not the speaker for all (never have been) but I put the questions out there.


Human Beings First

If we (as human beings) all defined ourselves by a set of labels it would be rather reductive and in reality a real shame. At the end of my sessions I offer a reality that despite the differing levels of “pieces” and/or disability they are not defined by their condition, they are human beings first like everyone else.

Paul Isaacs 2017


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Not Proud Nor Ashamed – Balanced About Being On The Autism Spectrum

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I Was Born A Human Being

I was born in 1986 and as far as I know I was born a human being just like the 7 billion other people on the this earth and of course I had my issues related to autism not being able to speak, not seeing the world as a coherent whole, faceblindness, receptive and expressive language disorders, oral apraxia, hemiplegia and list goes on. These thing are not “me” being face-blind isn’t me, being aphasic isn’t me and being hemiplegic isn’t me either.

Autism A Describing Word

“Autism” is describing not defining for some people autism is a culture a place to be in and around a shared culture, however I do not believe that autism is a culture but has been created as such and maybe the question is who created culture? What rules apply? What rules don’t? What is “autistic”? What isn’t “autistic”?

I often wonder I feel however so more closer to being a human being then defining myself by one word which means different things to different people.

When I was formally diagnosed in 2010 with autism I was told by my parents that you are still “Paul” and this diagnosis only changes one thing that you aware of what difficulties you have had.

Autism Is Apart Of? Not The Defining Factor?

I would agree with them and be understanding my autism and as clustering of differing conditions I was able to piece together my “autism” not as I saw fit but looking at deeply and introspectively enough to understand myself and hopefully empower others.

I know what autism is for me it is apart of not the defining factor I feel indifferent and balanced about what it means. I have done enough research and consultancy work to know that personality types, co-conditions, environmental factors, metabolic disorders, auto-immune disorders, learning types and communication styles, will have an impact on the presentation of one’s “autism” so what does that mean?

  • Not one intervention works for all.
  • Not all the issues are the same despite have a similar and/or same diagnosis.
  • Not all people with autism have the same wants, needs, or desires
  • Not all people on the spectrum have the same communication profiles.
  • Some people on the autism spectrum have auto-immune and metabolic issues which impact on functioning.
  • Some people with autism have dietary disabilities which impact on learning and information processing.
  • Some people on the autism spectrum will have undiagnosed personality disorders and mental health co-conditions that keep being called “the autism” when they are not.

I AM autistic but I HAVE immune deficiencies, I HAD cancer (apparently I can’t actually un-have it, its called remission) , I HAVE Ehlers-Danlos Syndrome… I also HAVE visual perceptual disorders, I HAVE language processing disorder, I HAVE mild learning disabilities.

I do not feel I AM these things, they are not ME, they walk alongside of me, often as parts of my autism, and whilst I AM autistic, just as I AM immune deficient, and I AM mildly learning disabled, Autism is not the sum total of who I am, it does not define my entire being or personhood, even if my personality traits are archetypally relatively ‘autistic’, I remain a person WITH autism… someone who HAS autism and, ok, IS autistic. The rest is war mongering militant separatist fascist crudola

– says Groucho
“PLEASE ACCEPT MY RESIGNATION. I DON’T WANT TO BELONG TO ANY CLUB THAT WILL ACCEPT PEOPLE LIKE ME AS A MEMBER”.

Polly Samuel 2013

Overall autism is not the defining factor of my me. My personhood that will always shine first not because I am ashamed of my autism nor because I am not proud of it either I remain balanced in what that means it gives me clarity and sanity. I am a human being first.

Paul Isaacs 2017