Paul Isaacs' Blog

Autism from the inside


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Anna Kennedy – Autism & Mental Health Workshop

Mental health issues effecting 70% on the spectrum… a far cry from the old days where if you had any moodanxietycompulsivedissociativeattachmentadjustmentemotional or behaviouralpersonality or identity disorders or psychosis you were trolled with you ‘couldn’t possibly ALSO be autistic’. Alternatively people without functional communication who also have mental health issues traditionally have had their mental health issues almost as standard fobbed off as ‘part of their autism’.

Donna Williams 2016

Mental Health Co-Conditions Covered In Workshop

Mood Disorders

  • Emotional Dysregulation
  • Bipolar Disorder
  • Cyclothymic Disorder
  • Dysthymia
  • Depression

Anxiety Disorders

  • OCD
  • Exposure Anxiety
  • Social Anxiety Disorder/Social Phobia
  • Panic Disorders
  • Separation Anxiety
  • Catastrophising

Psychosis

  • Hallucinations
  • Delusions
  • Substance Induced Psychosis
  • Schizophrenia
  • Schizoaffective/ Schizophreniform Disorder
  • Catastrophising – Psychosis Related

Impulse Control

  • Body Repetitive
  • Bruxism
  • Dermatophagia
  • Skin Picking
  • Nail Biting
  • Nose Picking
  • Hair Cutting/Hair Plucking
  • Self Injury Disorder

Attachment Disorders

  • Attachment Disorder
  • Reactive Attachment Disorder
  • Social Engagement

Dissociative Disorders

  • Autistic PTSD
  • Derealisation
  • Depersonalisation
  • PTSD
  • Dissociative Disorder NOS
  • Dissociative Identity Disorder

Autism, Asperger’s Syndrome and Aspinauts

What Helped Me? (Personal Perspective)

Paul Isaacs 2021


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The Toxicity Of The Autism Community

Narcissistic Projection, Adornment Narratives & Superficial Behaviour

We are all up for judgement my advice to anyone whom makes assumptions come to the person first rather than creating a reality in your in mind in which you believe to be real. In certain facebook autism groups have become contrived, toxic, self-serving and unhealthy to be around.

Ownership and Respect

This goes beyond the remit of healthy disagreement or a basic acknowledgement of someone’s realities. If assumptions and projected realities which I do not stand for nor the lack ownership for one’s words or how they looked.

Faux Inclusivity & Confirmation Bias

If people wonder why the autism community is so broken, then maybe we should start taking a look at the conduct that militant advocates are taking in guise of help, empowerment and inclusivity?

True Inclusivity – It’s More About Others Than You

Is it inclusive to ignore people with dietary disabilities, gut, immune and metabolic disorders?

Is it inclusive to ignore fundamental basics neurology and/or biology?

Is it inclusive to see autism as everything about a person? Despite the three dimensional aspect of all human beings?

Is it inclusive to ignore people whom are functionally non-verbal?

Is it inclusive to use “neurotypical” (I prefer non-autistic) as a slur, put down or form of othering? Creating more division?

Is it inclusive to disregard one reality of autism because it doesn’t fit the status quo?

Is it inclusive to project and force a narrative onto someone without giving them the time or space to make up their own minds?

Is it inclusive to gossip, flame, swear and demonise people purely because they have a different reality to your narrative?

Is it inclusive to divide parents and children?

Is it inclusive that militant cultural and curist rhetoric (yes they have much more in common than not) gets more attention, air time and superficial interest than actually making a fundamental difference to people’s lives?

Be The Change You Want To See

I ask you is that healthy? Balanced? Overall what standards are we looking for? We as human beings should be the change and set examples not become bitter and ego driven.

Self Respect, Self Acknowledgment

Some people just take this playground mentality around with them. Sort your own stuff out first before you expect any meaningful change from anyone. I know my own self well enough to what happen was wrong regardless and I have at least have some self respect to know I am not deserving of it.

So politics are creating more fertile ground for these self serving agendas then with all due respect I want no part of it.

Paul Isaacs 2021


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Profound Autism? Or More Complex Autism “Fruit Salads”?

Different Fruits Salads? Different Realities?

Some people have more complex autism “fruit salads which means the ideas around need certainly to addressed. Terminology does become polarising and inclusivity means looking at all realities, including one’s which challenge people.

Difference In Information Challenges?

Complex autism “fruit salads” may have these pieces. There are significant differences in Asperger’s and autism “fruit salads”. To say they are the same is misdirected.

Profound “autism fruit salads” could look like as follows-

Language processing disorders (aphasia/verbal agnosias).
Visual Perceptual disorders (face, meaning or object blindness).
Oral or full body apraxia and other communication challenges.
Body disconnection/body blindness (body agnosias) making one prone to self harm.
Underlying gut, metabolic or auto-immune challenges to information processing.
Acute levels of Exposure Anxiety.
Secondary Mood, Anxiety and Compulsive disorders that may have been present infancy.
Are still living in the System of Sensing.
Overall higher levels of visual-verbal information processing challenges.

Conclusions

Identity?

This means that you understand the pieces, produce competence and intelligence and never over invest in these challenges being “them”.

Politics?

Advocacy should always be a balanced, inclusive narrative. I see it as a professional responsibility not to feed the masses fables, buzz words or rhetoric.

Being Authentic & Objective?

It’s about being real and if that makes people uncomfortable then one must reason our why and come to a place of peace.

Paul Isaacs 2021


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NAS Lambeth /A2ndVoice Workshop – Autism & Exposure Anxiety

This workshop was about the crossover between Autism and Exposure Anxiety. Presented and Hosted by Venessa Bobb.

Cross overs with Pathological Demand Avoidance, Oppositional Defiant Disorder, Reactive Attachment Disorder & Passive-aggressive Personality Disorder.

Additional Links

Autism & Exposure Anxiety By Donna Williams

PDA & EA Cross Over By Donna Williams

Paul Isaacs Personal Experience of Exposure Anxiety

Paul Isaacs 2020


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Living With Residual Exposure Anxiety

mde
Note this is from a personal perspective on Exposure Anxiety

I have written about Exposure Anxiety for many years, some people do not know they have this condition, some people they come out of it, for others they live in the invisible cage both in a prison and in sanctuary, hiding and residing in faux comfort and fear.

For some it is the involuntary compulsive, involuntary and self-protective responses that render the person sabotaging social situations when “self” has been aware of.

It’s pre-conscious act in which the person cannot control the nervous-system’s knee jerk reaction.

Although I still have a residual presentation of EA. I have come a long way, through self education, self awareness and self-advocacy. 😊👍

Paul Isaacs 2020


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Autism The Personhood Acknowledged

Humility, Humanity, and Rhetorics

Laura Corker thank you for sharing sadly this treatment very common (common does not mean right, moral, acceptable) and nor should time be used as a reason or excuse.

Historical Accounts


This open, honest and saddening blog I feel helps explain my reasonings, for it is when people are reduced to being seen as one thing that the wheels of injustice begin to turn.

Autism, Identity and Historical Underpinnings

Frames of reference change from centuries to decades etc. People wonder why as person on the autism spectrum why I want to be seen as a person first and foremost.

To seen as a person, to be seen as a human being, to have healthy acknowledgment of one’s abilities and disabilities.

Conclusion

If we strip militancy and autism politics then I feel more realities will be touched with the depthful knowledge of shared realities.

Echoed within the eternal halls of telling that the mind scriptures do not become dust but are laid bare for futures to come.

Paul Isaacs 2020


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White Privilege Is A Fact Not A Fiction

See the source image

Definition Of White Privilege

Accepting white privilege is not enough, acknowledging it is not enough, saying racism happens with indifference and apathy is not enough.

the fact of people with white skin having advantages in society that other people do not have:
Jane Elliot On Making People Aware Of Racism 

Apathy, Indifference & Ignorance

Acts of apathy and indifference is compounding the problem can imagine being told your reality was not “real”? Or that your reality was something that “just happened” and was met with almost chronic indifference from a social and systematic perspective?

The British Empire Was Driven By Racist Ideology

See the source image

White privilege is happening and it’s warped hierarchy has been happening for well over 400 years, when the British Empire stole land, resettled and uprooted the gears of this machine did start to turn.

It is irresponsible and insufficient to view the separation of family units in the Caribbean through a lens that ignores the massive legacy of slavery – which is how most those families came to live there in the first place – and its relationship with the Commonwealth.

Kemi Alemoru – It’s Time Britain Confronted It’s Racist & Oppresive Past, No Half-Truths Blog 2018

Changing Facts To Fit Narratives? 

It’s seeped into our “British Culture” as “normal”, in education, in employment, in media, in books and in movies etc.

“Before, people had to hide their racism. If you felt something bad about about black people, about Muslims, you had to shut up. Now these people have the confidence to come out in public to say everything. This is scary to me, that scares the shit out of me.”

Stormzy – Musician – The Guardian Article 2019 UK is ‘definitely racist’ an 

It’s time for white people to know what is happening from the other side, not just acknowledge as a point of interest

No person’s reality should traded as insignificant to another’s.

Paul Isaacs 2020


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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A Tall Tail Of Somotisation Disorder

The Beginning

I started getting symptoms of this in late infancy around 11 years old this was related to mitigating factors both to do with neurological processing such as aphasia, alexithymia and visual agnosias, environmental factors bullying and emotional triggering.

Psycho-Somatic Trauma Based Response to Negative Environment Experiences?

I would get sensations of my body “melting”, headaches, stomachaches, tingling in limbs, face and lips and by the time secondary school came and chronic bullying persisted in the first two weeks the pain would start again as stated above.

In particular, the pattern of shrinking was observed in two parts of the brain called the putamen and the caudate, a change oddly reminiscent of adults who have experienced early life stress, such as childhood maltreatment.

These sensations would cause me to have intestinal discomfort ranging from chronic constipation to nausea.

I would go to the school reception during lunch break sometimes on a almost daily basis saying either about a stomachache and/or headache. I would sit in floods of tears wanting to go home this went on for approximately 18 months as my nervous system was also being pushed as panic attacks usually followed before and/or after an episode of pain.

This meant that obsessive-compulsive disorder manifested in persistent hand-washing, counting, checking and reassurance around illness and disease began which last from the ages of 12 to 15.

Psychological Pain Presenting as Physical Pain?

What is Somatic Symptom Disorder

People with somatic symptom disorder experience real physical symptoms — they are not imagined. These symptoms can vary in intensity from mild to severe and often include breathlessness, exhaustion, or weakness, though pain is the most commonly reported symptom. Doctors may be unable to pinpoint a medical reason, or there may be a clear and diagnosable medical cause. However, people with somatic symptom disorder are likely to experience the symptoms of their illness more severely than is common.

 

Fast forward to this year and very recently I woke up in tremendous pain it started with an “itching” sensation in my lower arms and legs, then they felt like they were on fire, I got up and moved my legs persistently for 40 mins trying to “release” the sensation

I went to the GP this week who confirmed somatisation disorder secondary to an anxiety disorder, PTSD, depression and hypercondriasis which makes sense.

Pain would be triggered by talking about illness in any context,so for example people on the bus sat behind me and in the GP waiting room for example the described pain would migrate and move from my lower back, to my upper back from upper limbs to my lower limbs my body would begin to shake and adrenaline fired through my body, my stomach muscles would cramp up and it would gurgle.

I went for a walk two nights ago and my feet went “numb” this caused great distress and panic as I walked home however bursting into tears was a great release for me.

Conclusion

Now most of pain has subsided but what does psycho-somatic pain represent? For me I feel it is unprocessed emotions, recent environmental distress and need for my body and brain to calm down.

Paul Isaacs 2019


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A Lesson in Time – Mental Health Assessment Pre-Diagnosis

Paul 7 Years Old

Family Assessment

Tuesday 11th February 1997

Presenting Problems

Mr. Isaacs was unable to attend today as he is a shift worker and since accordingly this date he has been changed to day work. My initial impression of Paul was of a much younger lad (he is eleven in May) physically and psychologically.

Paul was eager to explain his concerns to me and at times was very insistent on not letting his mother give a more comprehensible explanation of the situations that had occurred.

Paul’s major sense of unhappiness and the reason for his referral is that he feels he is verbally bullied at school. he gave examples of being taunted primarily about 1.) The he way walks. 2.) Shuffling his feet. 3.) He wears glasses – and he has been called “four eyes”. However, he feels that the teaching staff are against him . In year 4 he had an unhappy relationship with his form teacher. It does seem one particular occasion he was humiliated – but to the infants so they could show him how to behave.

Mrs Isaacs also incited another incident which seemed to have upset her more than Paul. It became apparent that when Paul was explaining his situation at school his explanations tented to be repetitions of his parents points of view.

Paul after became muddled and it seemed there gaps in connecting and associating. It was also significant that when Paul referred to “she!”- his pronunciation was really that of “he” – I did check several times, but it appears that both Paul and his mother were unaware of this – which was marked. (receptive hearing problem? speech difficulties?).

Mrs Isaacs pointed out that Paul always had difficulties “concentrating” and settling down to work – she remembers this as stemming as far back as three year of age – When he attended play-group. she also recalls at this age and ever since that has had problems with “interacting with others” (her words). Paul has not many friends and it was brought to Mrs Isaacs’ attention by the teaching staff that he was a “solitary figure” in the playground. His mother also pointed out that they lived close of approx ten houses and that there were other children of Paul’s age, but he tended to say in.

Her explanation for this was that he felt safe and secure behind closed doors. Paul did mention some of his friends, but found it hard to articulate what he felt about his friendships with them. He did admit to hitting out at people at times is was significant that he mentioned his father hit him when he was angry. Mrs Isaacs denied this. Paul’s response was “I suppose Mum must embarrassed that I said that.”

Paul’s self-perception is that his “fairly sensible” , however he admits to being influenced by others into “being silly”, but he feels other children are being “sillier” the than him – “going over the top”. He feels he doesn’t go over “the top”. Paul has recently had to go back to the very basics in Maths with one other pupil. Mrs Isaacs conveyed concern and irritation that the teaching staff had not picked up on Paul’s severe difficulties with Maths; especially in view of him starting upper school at Lord Williams East in the new academic year (Sept 1997). Paul’s reading age is estimated as that of a nine year old. it appears the only positive subject that could of was Paul’ art. Mrs Isaacs believes and feels the teaching staff convey negative messages surround Paul’s overall performance. Mrs Isaacs explained that Paul gets very “worked up” over homework assignments, Paul also stated that he cries very easily hence his vulnerability at school in being bullied. It appears Paul suffers from anticipatory anxiety and expressed his fear of commencing upper school as he has heard he will get “beaten up”. Is is of significance that Mrs Isaacs was unhappy at ‘Long Crendon Primary School’ and suffered “bullying” at ‘Lord Williams’ East’. Mr Isaacs is also being scapegoated at work – he is being ‘verbally bullied’ (Mrs Isaacs’ words) and harassed and feels under a lot of pressure.

Family History

When referring to the history of the pregnancy Mrs Isaacs requested to speak separately – she explained she told no one of the pregnancy – only her partner (whom she is married to). She had been rushed into the JR as Paul “was distressed” – he was a month premature and was in SBCU post birth. She was unable to breast -feed Paul remarking they had said “she was too big”. Transition to weening had been unproblematic. Had been slow in walking – 18 months? He was sleepy baby and had to be woken up for feeds – He had been a “good baby”. However Mrs Isaacs had fond toddlerhood difficult – his “boisterousness”. Paul has had three operations 1.) Circumcision at 2 years 2.) Grommets 3.) Adenoidectomy at 4 years – at the JR and Radcliffe. Tonsillitis – query – Tonsillectomy otherwise healthy. Mother with Paul for all operations – no significant complications

Paul would like help with “the teasing” – he said it although it had been easier recently he wants to be able to cope with it better if it worsens again. He also says he is very sensitive and works himself into a state easily. There is also much anticipatory anxiety regarding this move to Lord Williams’ East in the Autumn. In ascertaining his mood he expresses no helplessness or hopeless feeling and denies suicidal ideation or such thoughts. He does covey and sense of confusion and bewilderment over the treating of staff’s “rude words” (his words) about his self-presentation. (persistent anxiety).

  1. Assessment from Psychologist (educational?) to check on cognitive abilities and overall school performance.

  2. Social skills group at “The Park Hospital for Children”. (mother drives) for interaction with class.

  3. Possible Family Therapy – concerns regarding Paul;s parents and levels of depression. Re-enactment of mother’s unhappy school experience and father’s “bullying” at his workplace, especially regarding “authority figures”

Cognitive Abilities , Cognitive Impairment & “Mental Retardation”

“It became noticeable he had very slow speech”

There was a massive transition in 1993/1994 prior to this interaction before this I was echolalic, meaning deaf to large degree around 80 to 90 percent and unable to speak in a fluid manner. Having visual agnosias, oral apraxia and challenges around receptive language meant that getting an interpretive and expressive framework was slow, stilted and lengthy. I went through bouts of selective mutism and hating my “connected” voice which then in turn triggered exposure anxiety.

there appeared to be a gap in connecting and association.

Still having complex visual and verbal blockages meant that my “cognitive abilities” were hidden and therefore not “seen”. I have no doubt that the lady in question had her own frame of reference on how I was processing the information so thinking I was “retarded” was just the tip of the processing iceberg.

Bursting into tears quickly’ – Alexithymia, Body Agnosias and Trauma

There are many overlapping reasons why this was happening at this point – the reason in which I was at this assessment was the persistent and verbal bullying from a senior member of staff at the primary school which I attended.

Having body agnosias meant that I couldn’t gauge or manage my own emotional states this would be related to alexithymia the inability to “know” your own states of emotion, the ability to “internalise” them and mentalise them on a “conscious” level. However many years later when I wrote my first book I came to realise that on a “unconscious level” all my experiences were unlocked through typing.

(receptive hearing problem? speech difficulties?)

I was traumatised from an early age by expressive language (but at times would be intermittently intrigued) due to a language processing disorder (aphasia).

I was triggered by exposure anxiety, dissociated easily and would struggle to get incoming information with “meaning”. Living in the world of the system of “sensing” before awareness mind and the ability to make interpretive connections.

Battling Books & Formulas & Artism

He has severe difficulties in maths.

His reading age has been estimated at an average age of nine.

Not being able to mentalise in a visual – verbal way meant that I had challenges around comprehension and getting meaning from books, written words and maths. (dyslexia, dyscalculia and visual-verbal agnosias). I found the process of writing very difficult the way in which I held the pencil, the ability to concentrate on each letter and sentence formation. The same goes for maths.

My solace for extraction and distraction was art which was were my mind was freed and felt “at home”. I started from a very young around 5 smearing paint on to a piece of paper and I was hooked from that point on then transitioning to drawing by route during this period of my development.

Prematurity & Height
“There is some evidence that babies who were born premature tend to be shorter in childhood, but they usually catch up with those born at term in late adolescence. But our study shows that women who were born very preterm fail to reach the stature you’d expect based on their parents’ and siblings’ heights.”12 Dec 2016

She noted that developmentally and that I seemed “younger” than my age from a psychological and psychical perspective. There is a link between having a short stature and prematurity, currently I am only about 5’8′ I do not think I will be growing vertically anytime soon.

Did I Have An Attachment Disorder?

I can assure you I was lucky that my parents gave me love, support and grounding even though they didn’t know that I was on the autism spectrum. Did they both have difficult childhoods and upbringings? Yes they did for many different reasons.

My Father had parents his whom were his primary caregivers who didn’t not show him love, affection, boundaries or a sense of meaningful inclusion. Both of his parents were cold and aloof and didn’t seem to understand (be it wanting or otherwise) the serious practicalities of what parenthood meant for in a child’s development and emotional well-being.

My Mother was seen as a disappointment to her Mother who was constantly comparing my Mum to other people explaining that she needed to be more like other people as opposed to building up her own sense of self identity, self-worth and autonomy.

The truth is I am and try to be a objective judge of character when it’s presented to me and the answer is no I did not have an attachment disorder and my parents were not to blame for anything.

My Mother fits the solitary, serious and self-sacrificing personality types. She is giving, emotionally connective and generous.

My Father fits the conscientious, mercurial and adventurous personality types. He is assertive, pragmatic and forthright.

I love and value them as human beings because despite their own “shit” they didn’t fling it consciously or otherwise on to me.

Paul Isaacs 2019