Paul Isaacs' Blog

Autism from the inside


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What if Life Was One Big Metaphor?

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Language and the use of it can be varied to the point that if you tried to think about all the language that people process and the variety of differing ways people interpret, receives, express, share, not share, avoid, connect, disconnect etc it is rather big and somewhat scary!

I can rote learn fun lines from advertisements, jingles, songs. Metaphors are some of these funny lines. I can learn metaphors as fun lines just like any other. And I commonly jumble them or use them in the wrong places, boldly certain I’m being linguistically creative and sounding like a total pratt. It is many the time I have looked at a supressed giggle or cringed at the overt ones as I fall over metaphors. I like metaphors, they are funny, but there’s a difference between learning language through rote and grasping, retrieiving and applying it based on interpretive understanding.

But to say Autistic people can’t understand metaphor is also a myth.

I may struggle with metaphors I haven’t had fully explained to me but boy oh boy… my entire life is like a metaphor.

Donna Williams

My late Grandfather was literal, pragmatic and had social emotional agnosia so he had a very linear, direct and conscientious in his way of expression. I have met others who are very much non-linear with their language tumbling, with neologisms, idiosyncratic and poetic . I have meet people who sense rather than interpret and other who interpret rather than sense.

It is in the end a massive melting pot of expression.

Paul Isaacs 2018


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A Journey With Cancer, Treatments & Side-Effects

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Cancer is a hard thing to talk about my Dad was diagnosed in 2009 with a type of blood cancer called Chronic Lymphocytic Leukaemia which attacks the white blood cells and comprises the auto-immune system. Early warning signs included fatigue and hard node underneath his armpit. After this diagnosis he got a second which would change the outlook of mortality and treatment in which he had genetic mutation of the p53 gene which is called the “guardian angel” gene for cancer. He in 2010 had been given three months to live if he didn’t have a bone marrow transplant (which came from Germany and the person had the same genetic deletion) it was then he had chemotherapy the the transplant.

He told me that one of the most difficult things prior was signing a piece of paper acknowledging that there is a 25 percent risk of him dying through this procedure. I am sad to say it but one of the worst things about the experience was the wards lack of knowledge on Autism and Asperger’s Syndrome and by letting staff members know actually made an already compromised and critical situation much worse he was name-called, laughed at and escorted out of his room during the his last day he belongings stuffed into black bags and told to wait in the communal room despite him almost dying almost three times in the 12 weeks due to fungal pneumonia. I trained them in autism for an hour.

The team gave him too much of the bone marrow donor swapping a life threatening disease to a chronic disease called Graft (donor) vs. Host (the person) disease which attacks the soft tissue, eyelids, foreskin, lips, mouth, gums etc leading to tooth decay, gum recession in my Dads case

The drugs he takes now is something called perdnisolone which was created in the 1940s in is a type of immune-suppressant which in the short term is very good but in the long term can have dramatic and even life-threatening consequences. My Dad has been on this drug for over six years and the effect on his life have been drastic mood swings, mania lasting days, explosive and odd reactions to sometimes the most trivial of comments, impulsive behaviours, personality changes (narcissistic and self-centred ideals quite the opposite to my Father’s kindly nature), psychotic episodes and paranoia. The hardening of the trunk of his body means he finds it hard to breath (dermatological disease), high blood pressure and muscle spasms and the constant flip-flopping of drugs (if you go over 20mg of pred you must take additional tablets to counter the side-effects of this). His body is steroid dependant meaning that I feel there should be alternate looks into helping a person safely ween off this drug.

Recently my Dad went “cold turkey” for over a month because of these side-effects his nervous system went into shock in the second week causing him to vomit, blood pressure to drop and so he self admitted to the triage in which he was giving pred as the only option. Chemotherapy, Radiotherapy and Predisoalone are all legal but destroyed and suppressed my Dad’s immune system to the point that he wasn’t my Dad anymore. I know there are other family members going through this I would like to say you have my sympathies.

I would to point out that my Dad is a positive and assertive person and through continued self direction, realist attitude, objectivity he strives to live his life as full as he can. 😊

#disablityandcancer #immunenology #autoimmunedisease #CCL#p53GeneDeletion #Aspergerssynrome #autism #sterioddependant #life#cancersupport #cancercare

Paul Isaacs 2018


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Autism – Communication Beyond Speech? Sensing A System Before Interpretation With Sharon King

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Sharon King Speech is only the tip of the iceberg. There are many more ways to communicate

Paul Isaacs I have had many a good conversation about Sharon with regards to the “system” of “sensing” a world before “you”, “I”, “self”, “ego” etc. All human beings go through this developmental phase some people on the autism spectrum stay (to varying and differing degrees) in this framework. A world before cladding and concepts that build on to some degree intellectual understanding vs. introspection. If someone is still in this system they may well pick up on things/situations/emotions that are raw, they may see other functions for things rather than its “interpretive use”. 🙂

Paul Isaacs For example I would use the toilet an its flush system as a “toy” a place to contextualise, a place to feel and get “sensory/chemical highs”, I used shaving foam, litres of bubble bath to create patterns on the tiled surfaces for hours and hours, would/do take in the smells of nature around, its textures, its feeling. I have learnt that some people want to know how you are feeling this moment, at this time and in which order that doesn’t make their system wrong as it is system they are using just as much I am using mine so I think there are more degrees of humanity between people who are on and off the autism spectrum than people actually think. Boxes only muddy the issue. I also think there are many people off the spectrum who live in this system of sensing as well.

My World = One’s Own World. This is our first world. Before all of its later cladding and contortions, it is at first a place of sensing, beingness, the preconscious mind and unknown knowing. It is the place where we understand self in others and others in self through the skill of mergence.

The External World = The physical world known through our sensory experiences as processed through our bodies/brains and experienced as sensations, thoughts, emotions, connections. This is a directly hands on world where sensing and beingness may be relatively strongly intact.

The Interpretive World = the world of applied meaning to incoming experiences that progressively builds mental structures and frameworks that ultimately filter our direct sensed experiences of the physical world and develops conscious mind as the primary guide.

Ego World = Ego contortion that further clads, alters and filters the logical meaning we get from experiences of the physical world and further buries our original capacity for sensing and beingness. This can be indoctrination, culture, economics, identifications, rewards, honed addictions and competition for social, economic, cultural ‘currency’.

Donna Williams

Sharon King Sometimes I wonder if feelings are more real than the external reality as they are our first point of contact being ‘within’ and everything else is ‘without’ to be filtered through our senses.

Paul Isaacs I FEEL before I interpret so its almost like a translation with knowing on a conscious level translating. The main difference I see between auties and aspies is the the system of sensing (to some degree) is far more “there” this also is taking into account the information processing blockages that come with that.

For example my Father is very much OPPOSITE he build up frameworks first, concepts first and then feeling and reflections come second. Its in the end a differing system of understanding information around you.

Paul Isaacs 2018


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Autism & Personality Types – They Do Exist

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Personality Types & Autism 

When we look at “autism” looking at personality types is just as important as any other factors. We could look at these aspects of a human being they are very much the “soul” of the person they pepper one’s temperament, personal outlook, emotional regulation, friendships, relationships and aspects of social and emotional interaction.

Identity Crisis

For people who are on the autism spectrum not all their “being” is dictated by the diagnosis that they have. This of course will vary from person to person depending on what part of their “fruit salad” are impacting and how they view their personhood within that. Is it hidden by language processing disorder? Is it being tempered and challenged by health issues? Or are there underlying mental health issues that are being called “the autism” when they are not?

Autism Isn’t a “Collective” 

Some people see their autism as “ego-syntonic” that is all their person and they feel it all of the time, others like myself see their autism as part of their “being” this means that other factors come into it such as environmental factors, mental health, identity and learning style all human being are made of up these things . For me it seems to over simplified and reductive to suggest that people on the spectrum share common goals, values and outlooks as a collective experience.

The “Sameness” Machine

“We” do not all come from the same place, we do not have a carbon copy autism “fruit salad” that is  shared from person to person. That means that one should be seen as an individual not just a sausage machine of traits. People are born with no labels what so ever and no one person is defined by “one word”.

Paul Isaacs 2018

 

 


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In Conversation With Sharon King – Autism Speaker, Author, Advocate & Mum

I first met the Kings in 2016 this was somewhat of an interesting meeting of minds, I was nervous it was my first speech/training session as a freelance speaker and it was in Telford at a National Autsitic Society Event. Her daugther Rosie diagnosed with Asperger’s Sydnrome was introducing the speakers in the main hall. I had seen Sharon and her family over the years on social media.

She was in the audience during one of my sessons and we sat down during one of the intervals to chat with her daughter Rosie. They were both very warm, friendly and welcoming I then went to their home the same year to do consultancy sessions with her son and daughter Lenny who was diagnosed with classic autism and Daisy who was diagnosed with Kabuki Syndrome.

It was a pleasure to meet them all including Sharon’s husband Richard who with their charming and down to earth manner it was had left me with a positive and reflective on impression and we have became all beomce friends. Sharon has since of 2017 publised a book “How To Best Help An Autism Mum.”

Sharon’s Ethos

What would you like staff to know about people with autism?

That each person with autism is an individual. Anyone who believes themselves to be an autism expert needs to get humble and go back to learning. The greatest barrier to learning is the assumption that we know everything.

What support benefited you the most as a Mum?

The greatest support has come from my children and othet individuals with autism who I have befriended. An arena of respect is where the best parenting happens. X

Further Conversation

Sharon King

I think. One of the most helpful things I have learned is not to take Daisy and Lenny’s behaviours personally. It is quite freeing. Ie ~ ‘this is happening, how can I deal with it?’ As opposed to ‘this is happening to me…poor me!’

Paul Isaacs

Yes I agree ever take things on the personal because it largely isn’t even the swearing and being bitten doesn’t bother once you know where it comes from.

Sharon King

Yeh like rubbing crap (with regards to smearing) into radiator nor personal ~ just a bit smelly! X

Paul Isaacs

Haha Humour is an ally! I used to urinate in the bath in my infancy I liked how the colour changed in the water I also got confused and would treat my bath as a “very large toilet” it looked like a duck, sounded like a duck so I thought it was a duck no? That is context blindness

Sharon King

At least you admit to it lots of ppl do it in secret! X

Paul Isaacs

Haha 🙂 The sods 😀This conversation proves that open-mindness is the key
open doors rather than closed.
Of course poo smearing can have different motivations for some it could exposure anxiety and keeping “people at bay“.
For others it could be to do with severe sensory perceptual and/or language processing difficulties.
For some it could be to do with addiction, habitual and compulsive in nature.
For others it could be to do with co-dependency.
One “behaviour” can have multiple reasons why. 😉

 

Sharon King

I think with Lenny it stems from a genuine interest and delight in textures x

Paul Isaacs

Sensory perception yes 😊

Its been a very interesting chat as always Sharon as there certainly is a positive an objective theme going on here with your permission could I use your answers on a blog? This then can be put on your page. 🙂

Copied with kind permession of Sharon King

Paul Isaacs 2018

 


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Valuing The NHS

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I seldom watch the news as I find it very odd at times. They were talking about social/community care cuts that are happening in around the country at rapid speed. The sadness is real as the head of a council made an excuse on the older populous and people with severe disabilities. To provoke such as response in which people must accept such cuts as a necessary act that people have to “deal with”.

I find it amazing that in 2018 people see “care” as something that the “state” should not fund for and somehow that seems to the overall case. I wish the people would understand that when people vote for right-wing polices the impact they have on services run for and by the state. It means cuts to vital services the infinite bloodline for people who need it. Profit should not be put before people, their wants, needs, desires.

The NHS will stand but it needs the staff and funding to work successful manner that benefits the service it provides by constantly saying the NHS is at “breaking point” implies that “it” is the problem that is not the case it was the most forward thinking and progressive service that was created.

If we go to a nationwide private system sick people will not have the money to fund their own treatment even simple dental check-ups would be missed causing great pain and social/emotional stigma and that is just one example. We do need to protect our NHS because it is for everybody I have no doubt that it will stand and keep going but as a state run service people need to have their say the patients and staff for it to work as solid unit.

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