Paul Isaacs' Blog

Autism from the inside


Leave a comment

Autism, Anxiety & Resilience

It is difficult for autistic individuals to embrace failure or take risks. Instead, patients see themselves as confined in a drama dominated by shadow archetypes, mystery, and chaos. This engenders an unpleasant emotion; one caused in anticipation of danger. Indeed, anxiety is the biggest source of stress for those in the autism spectrum. For many, it is their constant companion. Anxiety thus establishes an intimate relationship with a person only to be interrupted by occasional bouts of intense fear or even panic.

Manuel Casanova 2021

I have written over the years about my own experiences with anxiety and mood disorders from a personal perspective

The dualism of having visual perception challenges (simultagnosia, semantic agnosia) rendering me object and meaning blind was both freeing, tangible, emotive and enriching in one sense but could be the opposite – coping strategies from an early age were dissociation, assigned characters and secondary to exposure anxiety.

My first memorable episode was being meaning deaf not able to decipher the interpretive frameworks of language in early infancy.

Strategies Built Over Time

I value the past, I was undiagnosed until my early twenties so I lived in a sink or swim environment, lacking concrete conscientiousness as a “primary option meant I was adaptive in art, fantasy and later creative writing.

This became a much more leisurely venture, however I still use it as a way of bridging my emotional world through my works

Conclusion

I wanted to know whyI was like I was” this included my attributes, my vices & my personhood (I refrain from lacking objectivity in autism making the condition akin to a “superpower” I would much rather look at reality and all that comes with it).

This I suppose is grounding as you can like people for social binding qualities.

Paul Isaacs 2022


Leave a comment

Autism – When It Isn’t Just Neurological?

No (for some) with a high prevalence between 40 – 60 percent have either gut, immune and autoimmune disorders as opposed to people with AS who are less likely to have the challenges above – this can and does have an impact.

Vitamin D & Autism

Function

For example vitamin D (and other vitamin malabsorptions) which can cause secondary effects that can be disabling in their own right. Vitamin D is a neuro steroid which impacts on these areas

Some major known biological functions of neurosteroids include modulation of neural plasticity,[26] learning and memory processes,[27] behavior,[28][29] and seizure susceptibility,[30] as well as responses to stress, anxiety, and depression.[11][31] Neurosteroids also appear to play an important role in various sexually-dimorphic behaviors and emotional responses.[29].

Vitamin B12 & Autism

Function

Vitamin B12 aids with digestion and when malabsorption is present it can cause s vast array of neuro, psychological and psych- social symptoms.

Vitamin B12 was discovered as a result of pernicious anemia, an autoimmune disorder in which the blood has a lower than normal number of red blood cells, due to a deficiency in vitamin B12.[5][13] The ability to absorb the vitamin declines with age, especially in people over 60 years old.

Many cases of ‘severely’ autistic child I’ve seen as a consultant didn’t involve B12 deficiencies. Excess Salicylate levels, kids eating fluoride toothpaste and stripping out their gut lining, extreme learned helplessness and Dependent Personality Disorder in families who were co-dependent with it, visual/verbal/body agnosias associated with brain injury or dyspraxia which required brain gym and adaptations, kids with undiagnosed immune deficiencies whose brains weren’t firing on all cylinders but didn’t have B12 deficiency…. you get the picture. So stop grabbing one-size-fits-all autism ‘cures’ like maniacs in the last days of a department store sale. Get sensible and think holistically. Kids are not one size fits all. Nor is autism. Nor are autistic kids.

Donna Williams

Salicylate Sensitivity & Autism

Function

Salicylic acid modulates COX-1 enzymatic activity to decrease the formation of pro-inflammatory prostaglandins. Salicylate may competitively inhibit prostaglandin formation. Salicylate’s antirheumatic (nonsteroidal anti-inflammatory) actions are a result of its analgesic and anti-inflammatory mechanisms.

Hives, joint problems, headaches and attention/information processing issues were part of my childhood. I was diagnosed with juvenile arthritis around age 9-11 and put on painkillers until I was 17 and had few white cells. I had had immune problems all my life and was used to infections running in succession, lasting months and not responding well to antibiotics. By 17 I had regular migraines and was on asthma sprays and thrush became my constant companion. By age 26 I had multiple simultaneous infections (respiratory tract, bladder, eye infections), chronic thrush, severe fatigue, and episodes of numbness, vein problems and swelling in my hands, very dark circles under my eyes and what would later be diagnosed as ‘severe reactive hypoglycemia’. It was 1989 and when I was asked if I’d ever been tested for allergies, I was surprised such a thing could cause such ill health. I was referred to an allergy clinic.

The allergy clinic was run by qualified medical doctors. They injected me with a small amount of salicylate then measured the size of the histamine associated reaction. They had a scale of measurement for these bumps which went up to a score of 22. My score for salicylate allergy was 22. Ah, so that’s why aspirin swelled up my hands, feet, face and neck with edema!. I went home with a diet that was gluten free, casein free, no soy, low phenol, low salicylate and no refined carbs. I had no family support, no counselor. The withdrawal was horrendous. I made it and within 7-10 days I was becoming markedly better on all fronts. I remained relatively loyal to my low salicylate life for 21 years until I was 47 years old.

Donna Williams

Autism & P53 Gene Deletion

Function

A gene that makes a protein that is found inside the nucleus of cells and plays a key role in controlling cell division and cell death.

Deletions in mtDNA and altered p53 gene copy ratios appear to result mainly from genetics, particularly in children with more severe autism,” Giulivi said,” whereas the gene x environment interaction seems to play a greater role in children with autism with less severe symptoms.”

M Father has a P53 gene deletion, CLL (chronic lymphocytic leukaemia) and a diagnosis of AS it was through blood tests that they found out and had to go into a treatment of steroids and a blood transplant.

This would suggest that if the rhetoric is that autism is just – then you miss other realities that may not fit the cookie cutter narrative be bold and understand that it isn’t a one size fits all. Knowledge is power.

Paul Isaacs 2022


Leave a comment

Polly – A Life Beyond Labels

Donna Williams (Polly Samuel) was a remarkable, empathic and humble person that I have had the fortune to know, diagnosed with childhood psychosis in 1965 at age 2, a victim of poverty, trauma, physical and sexual abuse in her infancy and adulthood.

She lived with visual perceptual disorders, verbal agnosias, body agnosias, auto-immune challenges, elhers danlos syndrome and dissociative identity disorder.

In later life she was diagnosed with breast cancer and sadly passed away in 2017.

Her work has helped, aided and empowered many people over the years of her conferences, lectures and books both autobiographical and informational in content throughout the early days of autism advocacy.

Polly was highly intuitive, person centred and accommodating to people’s needs refusing to adhere to the “identity” politics (seeing autism as the centre of selfhood which respectfully isn’t) and the lack of objectivity within the extreme narratives, she challenged the use of the word “neurotypical” its use and the inaccuracies around the word and its inaccurate meaning.

Other work included the use of tinted lenses and how they aided with processing incoming information, visual perception, faceblindness, simultagnosia and semantic agnosia, language processing in which a person is meaning deaf and not literal, advocating for people whom are functionally non-verbal who use assisted communication, advocating for people who had exposure anxiety who find the directly confrontational world oppressive and challenging, advocating for people with dietary disabilities, metabolic, gut and immune disorders.

I first met Polly at an event in Headington (near the city of Oxford) in 2009 with my Father during the interval, I went up to her to ask how she created her artwork she then said after saying I am potentially on the autism spectrum she said “oh yes you are really sensitive and so is your Father.”

We connected on social media and she helped me greatly with understanding my autism profile, the politics of autism and helping me through challenging times when I felt no one was listening to be me.

Polly encouraged me to not fall into the trap of seeing “autism as everything about you” and warned me about the militancy and backlash I would get for not towing the line in the confirmation bias narratives.

Over the past five years since her passing I have tried my best to inform people of her “autism fruit salad analogy” in which you look at the different pieces specifically to the person and thus see the person first – merging the medical/social model of disability to create the empowerment model.

She had an infectious laugh and a zest for life and humanity and that is what I value from her is that she saw me (as others) as not simply “autistic” but human beings in their own right.

I loved her artwork and poetry it always seemed to speak a thousand words.

I miss you Polly I think I always will. x

Paul Isaacs 2022


Leave a comment

Militancy – Is That The Sad Way Forward For Neurodiversity?

Daemos & Idolos

I take the middle ground on because some of this is down to personal and/or professional preferences.

Autism politics is a great divider on the autism community.

I am neither a culturist nor a curist because they are two extremes which lack reflection and objectivity.

Getting Balance Between Two Polarising Extremes

They share one aspect they refuse to people on the spectrum as people one side “diseased” the other “sexy” (for very different reasons as people). This is truly saddening for me. Demonisation & idolisation at its most potent.

Autism & Selfhood

When I say person with autism I do not mean a literal appendage what I mean from an ethical point of view before labels (adjectives) are given to people we are born as human beings.

The next aspect is I see autism as apart of me because I am neither proud nor ashamed, here nor there it just “is” that is a personal standpoint and a choice.

It also means I am a human being no more, no less and living a human life. Surely that is the greatest gift?

Taking The Middle Path

Many roads.and different journeys I feel the first aspect of self acceptance is understanding you are a person and that is fine.


With regards to not being accepted I value it (it wouldn’t have been any different in my situation if I would have had a diagnosis or not) because the people who did had their own challenges, be it mental health, core beliefs, projection or otherwise we are all fallible.


So I thank them for it and the frameworks it has given and wish them well in their lives.
With regards to the autism community it’s just like any other it has its systems, politics, varying viewpoints, discord and harmony and I value people on their views of personhood regardless.


The premise of belonging is you first it starts with the interior and working on and unpicking perception of self and reality of connected self.


In other words be your own best friend first because it’s the flesh cage you reside in and you might as well make comfortable.


I am naturally solitary, idiosyncratic, self sacrificing and mercurial these are part of my patchwork quilt. I am asocial, asexual ,value friendship and a keen observer of folk.


Faceblindness and visual agnosias made me connect with that world kinesthetically, language processing (aphasias) made feel words beyond/before their interpretation, living in system of sensing makes me feel too much, alexithymia can make me feel like inner emotions are to be explored and hemiplegia makes my world halved and wobbly.


I was diagnosed 12 years ago at age 24. I was a functionally non-verbal child who presented as deaf and blind, echlolalic, meaning deaf, meaning blind and oral apraxia. I was grateful for my parents for seeing “Paul”.

I had a great mentor Donna Williams (Polly) whom helped me understand the guts of.my “autism fruit salad”.


We are all on a journey from birth to death and I respect your candid honesty in your work, moved by your treatment as a child and your passion for change that I agree with.
Sometimes people have different ideas of what neurodiversity means.

Paul Isaacs 2022

Autism, Disability & Looking Further

Expanding on this further “all” human beings are patchwork quilts made of different elements – environment, mental health, identity and learning styles.

Personality types are within all people up to 4 to 6 this means in to context of autism that there is more fundamentals going on.

Parts That Cause Distress? Parts That Don’t

Also there are parts of people’s autism “fruit salads” which do cause distress (ego-dystonic responses to information processing challenges) so that has to be looked into as much as the parts that don’t.

Egalitarian means the principal of equality for all, if voices and perspectives are being willing or unwillingly silenced then that isn’t really diversity.

Political Bias, Informed Choices & Realities

Autism is not a “culture”, “identity” or “community” inherently. That aspect has been created rightly or wrongly.

This why I am an moderate I do see people as such people.

Maybe that is were true neurodiversity resides?

Paul Isaacs 2022


Leave a comment

Autism, Aspergers, Applied Empathy & Sensing

My Father as diagnosed with Asperger’s Syndrome in 2010. I am going to give a two basic ideas from personal person perspectives who (not from an identity perspective but from a profile perspective) how two different diagnosis under the same umbrella can be different experiences of personhood, reality and information processing.

Social Perception – Practical & Interpretive

My Father’s profile consists of social emotional agnosia this is a non-verbal language disorder and has an impact on social perception because he doesn’t process body language, facial expression and tone of voice – so this means that information (even emotional) is understood through facts, he has alexithymia, sensory integration disorder, dyspraxia and dyslexia.

He cannot sense but that doesn’t mean that he lacks empathy. He has to be supplied the information such a way which semantically in a list like fashion for him to internalise and mentalise with coherence, once that is done he is able to use a “colour by number” variation in which all his prior knowledge of situations is used.

Other factors include a poor care giving enviroment which impacted on his development he is conscientious, hyper-social logical, literal and has social anxiety.

I was diagnosed with Autism & Obsessive Compulsive Disorder in 2010, Visual Perceptual Disorders & Learning Difficulties in 2012.

Social Perception

My profile consists of simultagnosia (visual fragmentation), faceblindness & semantic agnosia my social perception fragmented so I have to use auditory an tactile association to mentalise as well as being aided by tinted lenses, alexithymia, body agnosias and hemiplegia (cerebral palsy) make me disconnected from physical form, aphasia means that I struggle with after between 1 to 4 hours with tinted lenses to get a “shared sense of social” .

Applied Empathy – Sensing & Mergence

I can sense and merge with people readily when this happens I am unconsciously filled with the person’s internal states of mind (personality, core beliefs, trauma) and everything that goes with it along with my own emotions. I have to externalise to internalise in which I use art, poetry, creative writing read or look at and the learn about myself and potentially others.

Other factors include poor educational environments, being idiosyncratic, self sacrificing as well as being asocial, less logical, less literal and have exposure anxiety.

Conclusion

Its clear that the two systems have a different way of applying, rationalising, mentalising and exploring empathy and the differing informational processing underpinnings that although on the surface may be deemed as “the same” are actually quite different.

Paul Isaacs 2022


Leave a comment

Autism & Personality Disorders? Why Aren’t People Seeing This?

Autism & Personality Disorders? A Mute Subject?

I would say that we have to careful saying that personality disorders are a always misdiagnosis.

Borderline personality disorder can be connected with trauma and presentations of psycho-somatic/somatosensory amplification, alexithymia, poor self identity and emotional regulation challenges is common along with depersonalisation and dissociation.

Other common PDs with autism are as follows :

  • Schizotypal (common with Autism)
  • Schizoid (can be seen in both Autism/AS)
  • Obsessive Compulsive (common with Asperger’s)

Open Minds & Objectivity

So in reflection PDs have their own “fruit salads” too and one of the biggest myths is that autism is a personality type – it isn’t.

Paul Isaacs 2022


Leave a comment

Looking At People With “Complex” Autism Fruit Salads

Note this is from a personal perspective, professional and observational perspectives – photos supplied with kind permission of Sharon King.

Reference Points

When we think of the word “autism” what do we mean? What are we saying? Is it a person’s own observational perspective? Could it be what one has read in a book? Seen on the television? Or could it be around a family member or diagnosis that you have yourself?

What Lenses Are We Looking Through? Our Own? Or Others?

When I think of the words “autism” from objective stand point which filters in to my professional philosophy it must ultimately be person centred, there should be no room from stereotypes, misinformation, rhetoric, identity politics that ultimately cloud, divide and at times silence voices and realities. Inclusion should mean in principle a need to look at things other than your own lenses.

Patchwork Quilts & Fruit Salads

When I saw the both Daisy and Lenny King many years ago I was ultimately seeing people in there own right and consulted with the family and the different information processing challenges that they had.

  • Sensory perceptual challenges (face, object and meaning blindness)
  • Language processing challenges (aphasia/verbal agnosia)
  • Body disconnection (body agnosias, finger agnosias)
  • Communication challenges (oral apraxia)

The Precious Nature Of Seeing Personhoods

What I have enjoyed and still do as family friend is their company they both live in the system of sensing (a pre-conscious world in which they have mergence), they are fiercely and emotively introspective, solitary and self owning, they offer friendship and connectivity beyond interpretive frameworks but are still equally meaningful, they are idiosyncratic and individualistic and their intelligence is clear to those whom are open minded enough to presume competence and understand that autism doesn’t have “one look”.

Paul Isaacs 2021


2 Comments

Anna’s guest this week on ‘All things Autism’ was our charity Ambassador Paul Isaacs

Anna Kennedy’s guest this week on Women’s Radio Station was Paul Isaacs.
‘All things Autism” will be aired at 1pm and 1am every day this week.  Please see www.womensradiostation.com

Paul shared: My name is Paul Isaacs and I have been an autism advocate for over 10 years, in that time I have seen many changes – some positive and accommodating others separatist and polarising.

Birth & Early Development

I was born in May 1986 and I was a month premature.

By my Mother’s observations I was quite and happy baby, however after the first six months onwards she began to notice differences in my development.

The initial worry was that I was deaf and/or blind this was round 1987, my motor coordination was delayed, I had oral apraxia for a time and didn’t gain functional speech between the ages 7/8 years old in 1994. Due to being meaning deaf and meaning blind.

Mainstream Education & Employment

I went through mainstream education from the 1989 to 2002 despite having obvious challenges.

The social and environmental factors were acute if not initially passive by people in their presentation, comments, body language and judgement.

It was subversive from the adults within my village and more pronounced and opaque towards me from 1991 onwards at age of five, this then transferred into my educational experiences and larger part of my employment history.

What I Reflected Upon

What I have learned from these experiences is lack of knowledge creates judgement, bigotry and separation, but what causes this?

The Mechanics of Bigotry?

I think it is due to one’s environment, personality factors (although not entirely indicative), core beliefs (what is considered “normal”, “right”, “wrong”) and what could be extension of someone’s ideal of morality.

Paul Isaacs

Now what else I would say about this is false belief systems have to be procured and recycled.

It needs to be fed from generation to generation. This means that if these ideals aren’t challenged they cannot build fertile grounds of change.

Be Kind & Understand Why

This on a personal level this has brought me peace, balance and objectivity now I am not procuring bigotry or saying it is right, quite the opposite.

Sadly psycho-social and environmental underpinnings of ignorance have to be understood in order to give an opening for growth and internal change.

So in many ways the people whom projected their venom on to me. Did they have –

Information processing challenges?

Learning difficulties?

Their own developmental challenges?

Mental health conditions?

Challenges around attachment?

Personality disorders?

I thank these people for at the very least giving me a very clear framework of how not to treat other people.

Polly Samuel’s Fruit Salad Analogy

In the interview I talk about Donna William’s’ fruit salad analogy and how it has helped me grow not only in a professional capacity but personal one as well.

Over the years of being speaker, trainer and consultant I have used the foundation of her analogy and shared to masses so that people can be empowered (parents, carers, guardians teachers, mental health professionals and people on the spectrum) to get to the underpinnings of what is going on.

Could it be exposure anxiety? Could it be visual perceptual disorders? Could it be dyspraxia?

I am balanced that I don’t hold (and never will) all the answers and that in comes objectivity I do not speak for “all” on the spectrum that is impossible task.

I am but one person however what I can do is point out the multifaceted nature of “autistic fruit salads” and open up people’s perceptions.

In the end it isn’t about me, my ego, my status or my person it becomes about something greater other human beings.

Autism & Militancy

I am have noted the militancy within the autism community for many years, I am not affiliated with any groups nor do I procure to mantra of “us and we” which suggests that all people on the spectrum think and act the same.

I do not procure to using the word “neurotypical” as a slur with bigoted and separatist undertones.

How can one fight bigotry if you are willing to “other” people? Also I choose not to use that word because in my opinion there is no such thing because there are “non-autistic” fruit salads too.

Thinking About Human Beings

All people go through an AUT-istic stage of development.

People with autism can have non-autistic moments and experiences and people without autism can have autistic moments and experiences.

Lets be kind enough to presume competence, intelligence and in understanding the persons autism you have do not have to define their entire being by it because what else would be left? We have enough man-made divisions as it is.

I ask you do we need any more?

Paul Isaacs 2021


Leave a comment

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


2 Comments

What Is It To Be Truly Balanced? An Internal Process That Will Change Future Relationships, Core Beliefs & Attachment

Note- This A Personal Perspective & Observations

It’s interesting to me I have been thinking today about what makes “true happiness” or being content? Being loved? Love starts and ends with you, self love in terms of not looking for others to fix you and indeed be fixed. If one is there connected self then us no need for you to find anything as it all resides within you. Regardless of your surroundings – family, friends, children etc.Then once those seeds have been sown you can be fruitful friendships, relationships that are connected you know and feel their energy.

Some people aren’t ready to know that their conscious and unconscious minds, perceptions, core beliefs can have a deep reaction to unresolved trauma (this is about introspection, objection and taking ownership and responsibility) they may get angry, upset, dismissive, dissociative, become impulsive or go back to threads of thinking that confirm otherwise – this is a defence, I choose not to take it personally.

AUT-Tisitc Personality Disorders

  • Someone who is Schizoid may become inverted and detached
  • Someone who is Obsessive-Compulsive may want order, structure and control
  • Someone whom is Schizotypal may become more inverted and paranoid

Self based Personality Disorders

  • Someone who is who is Borderline may have bouts of emotional dysregulation due to feelings of emptiness
  • Someone who is Dependent may yearn and be submissive/or monopolise to their caregiver
  • Someone who is Passive-Aggressive may be angered by their and feel the world is against them
  • Someone who is Narcissistic may want revenge and delude themselves with grandiose thoughts

In the end these people need and open-minded and autonomous person whom can give them the space to work through there own challenges.

Understanding “Self” May Not Easy – The Road To Balance

You do not and cannot be in people’s shoes all the time, you may give them tools, balanced advice or nothing at all. However true connection you can ask for them to experience whoever they are – wish them peace and clarity.Here are mine – I know their origins and through that you work with the systems through rationalisation.

  • I would dissociate from interpretive language due to being profoundly meaning deaf during infancy
  • Body dysmorphia with regards due to circumcision and not processing operation and inappropriate incident in with children in my early infancy. This has extended to other parts of my body.
  • I have an ongoing binge eating disorder due to gratification of over eating (being encouraged, validation and “normalised”) and this is in relation to emotional dysregulation and impulse control in mid late infancy.
  • For many years I had emetophobia (fear of vomiting) which started when I vomited on the house carpet in house after having orange juice in infancy. It was resolved in my late teens.
  • I have at times a subconscious reaction to certain words/phraseology – this is now largely resolved as was due to a isolated incident with a teacher at Primary School.
  • I have had Shy Bowel and Bladder Syndrome due to having the toilet door kicked in when I was infant at school in mid infancy.
  • I pick my hair which is related to impulse control (dermatillomania) because it was a relaxing/comforting experience when my Mum picked scabs from my hair when I had chicken pox in mid late infancy.

Knowing the origins of different aspects of oneself can be a road that may be filled with fear and uncertainty but it could well be a release from the shackles of the past.

Paul Isaacs 2021