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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Donna Williams’ Autism Fruit Salad – Bridging the Medical and Social Model of Disability

When Donna published “Autism: The Inside Out Approach” in 1996 it was the beginning of a trail-blazing analogy which would look at autism from the factual, compassionate and directional angle.

Looking Outside The Box

It would ditch rhetoric, confirmation bias and group think it would challenge people views (rightly or wrongly) about autism as a singular condition but look at it through the lens as a multi-faceted condition in which the person has their own unique “pieces” which would present differently from person to person.

Setting A Fluid Framework

She quite rightly humanised medical conditions that present themselves as apart of someones autism such as visual perceptual disorders such as faceblindness, simultagnosia and semantic agnosia and expand on the themes of context blindness in pragmatic but emotionally binding way.

Breaking The “Status Quo”

She would advocate for people who had severe apraxia and aphasia as a part of their autism and would need facilitated communication and assisted communication tools. She would advocate for people who struggled with ABA programs which triggered exposure anxiety.

She would challenge the status quo of “all people with autism think in pictures” or “all people with autism are logical literal thinkers”. She would advocate for people with health conditions as a part of their autism.

Equalism

She would quite rightfully not tolerate internalised bigotry within the autism world and would promote a heart warming and expanding message of egalitarianism in which means equality for all which is not just said but put into practice in a person’s daily life.

Let her videos, blogs and books inform you and empower you for in the end what she wanted out of you was to the be the best version of yourself.

Paul Isaacs 2019


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Androgyny & Male Feminity

Gender conforms nothing to me since my teens I knew I was effeminate and what sort of bigotry around chasms of narrow passed down thoughts that being “feminine” is some how the negative “ying” to the positive “yang” of being “a man” in the context of denying your own weeping tear ducts and inner feeling states.

I am probably more happy now that I can have a matured head on my shoulders that I can take the assured nature of experience and use it now.

Paul Isaacs 2019


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My World- Autism, Ethos & Humanity

I am pleased an eagerly proud to be working for a small autism organisation called My World and day centre for people on the autism spectrum. This summer it shall be four years of service to which I have contributed my consultancy work.

With people who have a narrow, conceited and reductive view of what autism “is” and how one is supposed to “act” and “behave” noting that it has “one look” so therefore “one approach and intervention” is wrong and that doesn’t happen here.

At My World all the caring and empathic staff are valued, open-minded and willing to learn this means that what is taken is a person-centred approach, looking at the person’s mental health, learning styles, information processing challenges and ultimately sees them as people or equal worth and value going about their day and purcuits.

Our success is our ethos, open-mind natures, ability to learn new things and approaches and empathy which encourages people in the end to be the best version of themselves.

Paul Isaacs 2019


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Autism & Identity

I have never seen all of my being as autistic because the word is an adjective a describing word of an experience.

Current Experiences

I experience face blindness, object blindness and meaning blindnessas I do a language processing disorder, hemiplegia, body agnosias and associated learning difficulties.

Past-Tense Experiences

There are also experiences in the past tense such as over coming oral apraxia, high levels of exposure anxiety, selective mutism and gaining functional speech although it was a long road to doing so.

Personality Types

I have personality types such as Mercurial, Idiosyncratic, Self-Sacrificing and Serious (all human beings have personality types of varying types).

Conclusion

Autism is not ALL it is PART OF I see myself as a person a patchwork quilt made of many things. Autism just “is” I am neither proud nor ashamed. I seek balance not objectification. 😊

Paul Isaacs 2019


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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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Valuing The NHS

Image result for nhs jobs

 

 

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