Paul Isaacs' Blog

Autism from the inside


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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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Paul Isaacs: Living Through the Haze 2nd Edition Review By Dr. Manuel Casanova 

 

Paul Isaacs’ book, “Living Through the Haze”, has been published (second edition). The book has new content, a new introduction and an afterword that I wrote. Paul was diagnosed as autistic in 2010. As a child Paul was considered to be a “naughty child” with no prospects for a future. At present Paul is a lecturer, trainer and consultant who promotes autism awareness throughout the UK. In the following paragraphs I provide the afterword that I wrote for “Living Through the Haze”:

Many times during his life Paul felt confused and detached from his surroundings. His attention could only focus on one aspect of his sensory experience. He lived his life as if wearing blinders, and as such, he could not react adequately to what people asked of him at home, at school or at work. His perceptual style made him seem odd to his peers. Parents, teachers and peers objectivised and bullied him.  In the end the reader can only wonder, how did Paul survive?

For many autistic individuals the environment overwhelms their nervous system with information.  Seeing a face is like looking at the sun. Blinking, when looking at the sun, is a response aimed at avoiding damage to your eyes by allowing only a sliver of sunrays to hit your retina. In autistic individuals, allowing only a sliver of available information into your brain is meant to protect it from overstimulation. Overall, autistic individuals can’t see the forest for the trees and it is easy for them to become thoroughly engrossed in the details of a particular situation but miss the larger picture.

Paul grew up displaying many of the classical symptoms of autism. Unfortunately, as is the case for many autistic individuals, his diagnosis came late in life.  Still, he prospered and found fulfillment in being a speaker, counselor and in helping others like him. In this book Paul publicizes his own plight with some of the darker aspects of autism. Through no fault of his own Paul was misunderstood and relentlessly bullied by even those who were supposed to protect him.  The psychological and physical aggression that he suffered is at the crux of a mixed mood disorder that at times has greatly handicapped him.

So we can ask again, how did Paul survive? In a longitudinal study sponsored by the NIMH on so-called recovered autism, it seems that the most salient commonality for those that “recovered” was caring parents who were quick to act on behalf of their children.  Paul in this regard was blessed with caring supportive parents and grandparents. He also found solace and purpose in a special education camp outside of school, which he called the “Autism Base”. There he found others like him living within a spectrum of severities. More importantly, within the Autism Base he found comradely and a social sense of togetherness.

Paul has not forgotten the painful experiences of the past but has learned from them.  Indeed, the excuses provided by the teachers who failed him are indelibly marked in his memory. He has a keen power for introspection.  His ability to self-reflect is one of the reasons why I believe that there is undue emphasis in the Theory of Mind conceptualization of autism. Paul was always keenly aware of his mental state and on occasion provides privileged access to the mental state of his parents.

This is a must read book for parents with autistic kids, especially if they are attending mainstream schools. The book is also a valuable aid to teachers. It portrays in a no holds barred way the effects of intimidation and the behavioral manifestations of bullying. Finally, Paul provides many constructive comments and guidelines as to how to improve the school system and teaches by example the positives of a supportive role by parents.

Source: Paul Isaacs: Living Through the Haze


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Autism: A Very Sensory Christmas

family-christmas-early-90s

 

Note: This is from a personal perspective

One of the amusing observations from my parents was my indifference to Christmas in the my early infant years, this would be noted as they would wait eagerly excited on the day while I would still be fast asleep in my bedroom coming down later in the day.

OBSERVATIONS

Another observation was my facial indifference to the event at hand the lack of excitement as each present was opened. My Mum can remember one year they bought me a bike which was perched on the fireplace (not lit of course) she seemed bemused that I didn’t go to the biggest first opening the presents scattered around the tree, when it came to the bike being opened she can remember me staring indifferently at the bike with no seemingly no acknowledgement of what it was or the significance of what it meant.

Looking a back at these two observations I can see many different aspects of what was going on from the inside and how observationally they caused confusion with my parents.

WHAT COULD BEEN  SEEN MAY NOT REFLECT “INSIDE”

One of the conditions I have noted about is simultagnosia and seeing things in bits along side aphasia and language processing issues these hidden blockages no doubt would have an impact on how I physically expressed my emotions to the outside world, be it in this case contextually joy, excitement and love.

All these things I feel and felt but because of visual perceptual issues, language processing, alexithymia and information processing delays these were not seen by my parents however other aspects of Christmas did excite me such as the colourful wrapping paper, glittered tree decorations and the twinkling lights but it was much more instant for me to access how I felt about a present would take longer so time would be needed. As the years progressed so did my level of understanding of what was going on.

I was happy at Christmas. 🙂

Paul Isaacs 2016


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Mental Health: Reflections Of Moving On From Negative Environments

ShortsNote: This is from a personal perspective

Negative environments

Negative environments can leave “hidden difficulties” that become about to the mix of things that may not of been there when the person entered them. Mental health is tempestuous subject in itself but looking after one’s own mental health and being aware of the “warning signs” of mental health issues can be a very difficult one to acknowledge and accept that is happening.

Slow escalation of events

Sometimes events can slowly build up from behaviours of others, this may have a slow gradient like effect that initially may seem quite “mild” in the sense that the overall impact is small and may well be just secluded to the event which happened and the person is able to get on with their day with no trouble at all.

Sometimes “resolve” doesn’t come in the form you expect

What if that situation lacks resolve but you yourself want a resolve? What is the situation is being mishandled? And you yourself want it to be handled correctly?

With a moral compass for feelings to not only be acknowledged but to withhold a balanced and healthy level of objectivity.

If those basic foundations aren’t in place for whatever reason and you feel trapped and/or obliged to keep going, there is going to be a tipping point and decision making that needs to be addressed, surely for the benefit of the parties involved.

Let go of the situation and the people within it

My reflections are only from a personal perspective on whence they happened but I believe that one of the primary mistakes that were made by me was to keep staying for the long term – I know why I did. It was primary because I didn’t want to leave; it made me feel uncomfortable for the future and what that meant in the long term.

Positivity and new experiences are valued

When I left the situation my mental health improved gradually to a point where my mental health was on an even keel and was not impacted by mood disorders, emotional regulation problems, clinical depression, and personality disorders. The “invisible chains” that had shackled me where gone I had gained a level of control, autonomy, roundedness with the ability to look back not in shame, self-pity but that a lesson was learned.

Paul Isaacs 2016


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Healthy Boundaries, Healthy Relationships, Empathy And Not Treating Others As “Objects”

SAM_0739The Importance Of Healthy Boundaries 

Healthy boundaries are so important for all types of relationships when boundaries are pointed out is good for both parties if autonomy is taken away (for what ever reason) can have negative affect on someone’s self-worth and mental health.

In context of people who have negative personality extremes such as

or other associated personality disorders.

Being Balanced & My Journey With Borderline PD

A journey to building up a sense of “self” (because of developmental and personality types/traits) has been very important to me as I am nearing 30 I kind of know what sort of energy is “balanced” with regards to people and friends and when people are crossing boundaries and learning when I am doing the same.

Autism & Borderline Personality Disorder 

This is a link to my website on how this affected me in the late 2000’s and how it can make you feel this is why a value positive and constructive direction not giving too much but at the same time not receiving too much either. This was a tough time in my life but I am glad I go through it a learned a lot from it also. 🙂

Workplace 2007 & Mental Breakdown

I felt worthless at this point due to persistent difficulties in the workplace It was my first place of employment  so I took it out on myself. There seems to by other types of Borderline PD which includes social manipulation, lying and game playing. None I which I did nor do 

What happened to me was an implosion and psychotic breakdown due to environmental stress and workplace bullying.

Autism & Personality Disorders – Coexistence? 

Autism is part of someone’s developmental trajectory- it is diverse and unique in it’s presentations but all human beings also have unique personality traits and types which develop as well.

In the context of autism personality traits/types and styles are just as relevant and if you take my examples above you can see a “normal” personalty type pushed into the “disordered” extreme. On top of that my autism comes into play too in terms of the processing information, language, visuals, “self” and “other” and all the other aspects of my “fruit salad”.

Kindness – I like to help others I but there has be personal boundaries. which is thinking of the person in question good intentions come from the right place with me but what I have learned is about volume and negative intensity. I think about other peoples feelings a lot.

Mercurial Personality Type  – This is the “Normal/Balanced” version of Borderline PD

  1. Decency; Earnestness; Thriftiness.
  2. Mercy, Forgiveness; Modesty, Naturalness.
  3. Hope, Cheerfulness, Joyfulness, Sociability.
  4. Sincerity, Straightforwardness; Honesty, Fairness.
  5. Tolerance, Liberalism, Open-mindedness.
  6. Generosity, Liberality; Courtesy, Graciousness, Equitableness; Altruism, Kindness; Affability, Friendliness.
  7. Idealism.
  8. Energy, Enthusiasm.
  9. Artistry, Inquisitiveness; Boldness, Spontaneity; Creativity, Humorousness.

Family 2003 1Failure is “Normal” and Relative 

I am glad my parents gave me the chance to have autonomy, freedom, understand “failure” and criticism are normal parts of being human and that the goal of being apart of not the centre of is  a good thing and valuing other peoples feelings and autonomy. The importance of being kind and sincere with depth and integrity I know I got from my parents.

I know where I stand with my parents and certainly my friends too. I can’t imagine how a child could be treated in such destructive way that would effect future development in teenage and adulthood that is scary.

Paul Isaacs 2015