Paul Isaacs' Blog

Autism from the inside


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Atypical Features & Androgyny

I have atypical eyelids, shaped eyebrows, a crooked mouth and nasal bridge however people have told me either I look like a woman and/or have features of a woman for which I am flattered by their optical observations of my variants of my somewhat fruitful and irregular visage.

Androgny can be a look as much as an attitude a timely peek into someone who is a mixture of masculine and feminine.

I am not perfect and that is what should be cherished a feeling of unshackled non-perfection I find solace and tempered grounding beneath my limbs in these thoughts and I can smile freely. 😊

Paul Isaacs 2018.


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A Journey With Cancer, Treatments & Side-Effects

Dad in his 20s 2

 

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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An “Autistic Mind?” Really?

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Stretched along a small fractional time-span of life which I have lived in comparison to the elders around me, I sought to wonder my inked mind of swirlyness in which fragments put out of the ghost-like fog like bearing lanterns in London in times of old.

My mind is blocked in certain areas of passage but not as much as it used to be in terms of having a “seeing mind” and “hearing brain” that boggles with pre-filtered thoughts that extract readily through my fingertips as if a giant piece of knowledge was wailed with me knowing why or what it is used for.

I would say if anything my mind is “human” as subjective as a term should be, but never the less as true as the sun in the sky and the forests in the wood that is in mind at the heart of the matter, the core that runs the coils, the heart-mind that beast my inner cavern of light and darkly thoughts .

My eager soul is not wanting the when whole cake of me to be seen as “autistic” because in the end if you had an “autistic cake” would it really just taste of “autism” I think it tastes of so much more drenched a mouth of fruitful flavoursome differences that colour my being stretched on a canvas of existence.

Paul Isaacs 2018


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Exposure Anxiety & Autism

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Exposure Anxiety was first written about in Nobody Nowhere in 1991 as a syndrome of involuntary and compulsive avoidance, diversion and retaliation responses.  A large section of my first text book, Autism; An Inside Out Approach in 1996, was dedicated to setting out strategies for managing, even reversing Exposure Anxiety.  In 2003 I wrote the first full book on Exposure Anxiety.

Published in 2003, Exposure Anxiety; The Invisible Cage of Involuntary Self Protection Responses, is the first ever text book by a person diagnosed with autism specifically focusing on co-morbid anxiety and impulse control disorders effecting those on the autistic spectrum.  It offers an innovative new approach to working with some of the most challenged people on the autistic spectrum.

Drawing on an ‘Indirectly-Confrontational’ approach, this 336 page book gives case studies and a wealth of strategies to reduce and progressively overcome the compulsive and involuntary avoidance, diversion and retaliation responses of Exposure Anxiety.   Exposure Anxiety is an ‘Invisible Cage’ that challenges the person to either side with it and identify self with their own compulsive self protection responses.

There’s is considerable overlap between Exposure Anxiety and conditions such as Pathological Demand Avoidance (first diagnosed in 2008), Oppositional Defiance Disorder (first in the literature around 2002), Avoidant Personality Disorder and Dependent Personality Disorder.  With this book actually written from an Inside-Out Approach, by someone who actually lived their entire life with and ultimately managed then overcame the condition, those looking for strategies for managing and reducing these conditions may find this book extremely useful.

Donna Williams

Motivational Differences Between Pathological Demand Avoidance Syndrome & Exposure Anxiety

As someone who has lived with chronic EA all my life this certainly different to PDA who may tolerate an audience (in a social context) I do not while with PDA is triggered by DEMANDs. I am triggered by EXPOSURE which is completely different in terms of motivations.

Exposure Anxiety, Personality Types & “Triggers” 

People with EA have a lack of sense of “self” this it true people with EA may see their condition as the very barrier to showing other’s themselves. I like my own company so naturally being solitary that isn’t a problem, also a lack of sense of self can be seen in people who are mercurial and fear loneliness (real or otherwise) those personality types I have.

If you wanted to want, wanted to be, wanted to co-exist but your EA was crippling you from doing so because of being noticed, awareness of existing etc, that would mean you were in a hidden battle a battle happening when nbeing triggered by the co-existense of other people, with the WANT and the  EA being in polar opposites and it being seen as ego dystonic.

ego-dystonic [e″go-dis-ton´ik] denoting aspects of a person’s thoughts, impulses, attitudes, and behavior that are felt to be repugnant, distressing, unacceptable, or inconsistent with the rest of the personality. See also ego-syntonic.

In EA you can have chronic, diversion, retaliation responses which in my case were running away, freezing, selevtive mutism (once functional speech came) and shutting down when people were expectant of response, expectant of a reaction and expectant of one’s own existence. Did that mean I would hurt the people I liked? Yes of course and then feared loss through these actions.

A message of hope would to understand EA its mechanics and to get the best out of the person and who they want to be.

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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Celebrating My Gramp’s Life

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My Gramp had a wonderful send off yesterday the night before we said our goodbyes at the chapel of rest. He looked serene and calm in blue. I touched his face for the last time his skin soft and his hair the texture of snow. The next day we went to Oxford Crematorium to pay our respects and celebrate his life.

I firmly believe that in order to go to a funeral you must have known the person on a superficial level and that you aren’t there for your own selfish agenda to cleanse your sins of not being there while they were living, treating them poorly in life and making it all about you it is the ultimate hypocrisy.

I am so glad it was a celebration of his character, ethos, humour and outlook.

Gramp was a kindly fellow who cared deeply for his friends and family and would spread his kindness to those who took time to get to know him. He was funny, serious, charming, witty and above all loyal. He took shit and as another friend said made sculptures out of them from the people who decided to damage his character by spreading rumours to the verbal tirades he always knew who he was and carried being true to himself thats is what I loved about Gramp he loved life.  xx

Paul Isaacs 2017


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To Polly – A Friend – Thank You

 

To Polly A Friend

Words cannot plunder

The source of your wonder

A light in the bleak dark

Words that make their mark

A kindly soul with the gift to give

A balanced example of how to live

A humbling experience your facts and humour

Your words, pictures and  legacy will forever nearer and sooner

Empowerment 

What can I say? I often have wondered how to put into words how I feel about the impact that Polly has made on my life, the words, the support, the chuckles over our skype chats the personal and professional guidance that was given in the blink of an eye. She has helped broaden my professional career, empowered me to find myself and ultimately has given me invaluable tools.

Setting Examples 

The kindness and concern the building blocks shown by words and example and the insatiable zest for life and to “just be” in your own skin, to have fun, to be serious, to be balanced, to be caring, to be selfless, to be you, to understand me and other, to be giving and to be caring, to not put yourselves above and to finally find yourself and pave your own journey so you may have the tools to experience life anew. That is what I think when I will remember Polly a shining example of balance, breaking of barriers, retaining self, not selling out and creating her own path.

Connecting 

I meet Polly briefly in 2009 at a conference and connected with her on social media a few years later. I value her friendship because she showed me that relationships can be built on safe, secure and balanced foundations and to expect anything less is the time to move on and pave something new. I am fully aware people knew Polly far more than I did in terms of length of time and so forth. I would like to say that the impact she made on me and her continued friendship online put faith and self-belief back into a realistic and doable perspective.

I thank you Polly for giving me the tools to empower, for giving me hope, laughs, reality and solutions and just being you.

Nobody Nowhere – Paper Owl Films 

Paul Isaacs 2017