Paul Isaacs' Blog

Autism from the inside


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The Problem with Somatisation Disorder

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Note this is from a personal perspective

Certain personality types (such as mercurial/borderline) are more akin to having somatisation type disorders in which person feels they are becoming increasingly ill and/or have serious and multiple symptoms that indicated a serious illness and/disease.

“The main features are multiple, recurrent and frequently changing physical symptoms of at least two years duration. Most patients have a long and complicated history of contact with both primary and specialist medical care services, during which many negative investigations or fruitless exploratory operations may have been carried out. Symptoms may be referred to any part or system of the body. The course of the disorder is chronic and fluctuating, and is often associated with disruption of social, interpersonal, and family behaviour.”

Awareness of Emotional States and Somatic Pain

The persistence is the pain and the feeling that invokes, having alexithymia means that I have problems identifying what my inner states are leading to often painful and chronic psychosomatic symptoms which in my life time have included as follows

  • Nausea
  • Tension Headaches
  • Toothaches
  • Jaw aches
  • Lower back Pain
  • Arm and Shoulder Pain
  • Pins and Needles in Legs and Feet

The recent bout is having a pulsating tinnitus in my left ear which is anxiety/stress related and is not due cardiovascular disorder and or stroke related symptoms but never the less is persistent at the moment. Age and awareness in my case have helped with these areas of anxiety and “getting on with it” as means to move on and look towards the psychological/developmental aspects they have on me in terms and working from there.

Paul Isaacs 2018

 

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My Work Ethos & The Person Behind It

I have never really written about what my job entailsits ethos, perspective and outlook on my page so I think its important to do so. I got a lot of my perspective from being diagnosed in 2010 with autism at the age of 24. I didn’t know what autism was let alone what it meant for me. When I came out of the practitioners room, went down the hallway and outside into the fresh afternoon air, my parents were both present and my Mum said you are still “Paul” . This would be one on of many linchpins that built up my perspective.

A year previously I went to see the late Donna Williams at a venue in Oxfordshire and she gave a dynamic speech on autism containing information which up to that point I had never heard of and a year later we connected on Facebook. It started off from there asking questions about differing elements, pieces and sage advice mixed with wit, humour and her drive to always see people regardless of what label is put upon them as people. I want to share her knowledge, wisdom and perspective of autism to larger audiencesnot only to get to the know the person behind the creation of the autism “fruit salad” but to carry on her work to EMPOWER people.

My ethos is looking at autism as autisms as an adjective, an experience, a describer not a definer, I look at autisms as a clustering of differing conditions and syndromes based in neurology and biology, I look at mental health issues such as mood, anxiety and compulsive disorders, I look at personality types and their disordered extremes, I look at identity in gender and sexuality, I look at the psycho-social environment and their impact rightly or wrongly, I look at learning styles. In other words the ethos is based in looking at the “word autism” and taking a three dimensional approach rather than stereotypes, understanding the “labels” and not defining the person by them. We are in the end all born people.

Without Donna’s help I would not be here doing this so my eternal thank you will be to carry on her work and have a broader more collective view of what the word “autism” is.

Thank you

Paul Isaacs 2018


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Valuing The NHS

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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


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Autism, Shy Bladder Syndrome and Body Agnosias

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Parcopresis, also termed psychogenic fecal retention, is the inability to defecate without a certain level of privacy. The level of privacy involved varies from sufferer to sufferer. The condition has also been termed shy bowel. This is to be distinguished from the embarrassment that many people experience with defecation in that it produces a physical inability, albeit of psychological origin.

 

Environmental Origins and Processing Event

When I was eight years old and was going to the toilet at primary school in came two students were playing out side the toilets and preceded to kick the door in unison until it forced opened they looked upon me a laughed it took me a long to the process the event due to visual perceptual and language processing disorders.

Reactionary PTSD

This has has a dramatic impact albeit subconsciously on going to the toilet in public forums I cannot defecate until I am in places of familiarity leaving a level of bodily tension.

Body Disconnection & Delayed Perception/Processing

Visual analysis of faces and nonfacial body stimuli brings about neural activity in different cortical areas. Moreover, processing body form and body action relies on distinct neural substrates. Although brain lesion studies show specific face processing deficits, neuropsychological evidence for defective recognition of nonfacial body parts is lacking. By combining psychophysics studies with lesion-mapping techniques, we found that lesions of ventromedial, occipitotemporal areas induce face and body recognition deficits while lesions involving extrastriate body area seem causatively associated with impaired recognition of body but not of face and object stimuli. We also found that body form and body action recognition deficits can be double dissociated and are causatively associated with lesions to extrastriate body area and ventral premotor cortex, respectively. Our study reports two category-specific visual deficits, called body form and body action agnosia, and highlights their neural underpinnings.

Dipartimento di Psicologia e Antropologia Culturale, Università di Verona, Verona, Ital

I have had a level of body agnosia and pain agnosia in my life which have caused, social emotional disconnect, alexithymia, language processing disorder and so forth. This can also cause problems with understanding and perceiving “pain”, “discomfort” and my case “being full”. Staying over a friends house made me realise the problems that still resonate eating food and then forcing your bowels not to move then caused an unfamiliar “sensation” which I was able to then realise was “nausea” in the pub.

The second the delayed response was in the home when my body moving without understanding why or where climbing up the stairs I projected vomit but had no understanding of what, why or how. A wave of exposure anxiety came over me I had to stop myself from self-harming wanting to hit my head and arms. I said sorry repeatedly for the mess which was made however they were very understanding and caring.

Conclusion

I luckily have a sense of humour and hold these things with a level of comedic reality and I was lucky to have like minded people in my company. 😉

Paul Isaacs 2017

 

 


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So What is Simultagnosia & Semantic Agnosia? In The Context Of Autism?

Image result for occipital lobes and simultagnosia

Note: This is from a personal perspective

Simultagnosia is a condition that effects the occiptal lobes of the brain this is where visual perception and processing is connected, it also can have an impact on visual association, language perception/processing and overall navigation of the visual world around you.

“Blindisms” 

For me it meant not being able to access the visual world with coherence rendering me unable to access with my “eyes” and having to build up the visual world in a “non-visual” way such as.

  • Smelling
  • Touching 
  • Sculpting
  • Licking
  • Tapping
  • Moving

This started early in my development with my Mum’s observations thinking I was both deaf and blind (which is a common observation with people with visual agnosias) I was imprinting through EXTERNAL stimulus to build up a representation and connecting through other sensory modulations to make sense of the experience around me.

“Mapping” A System

As I have got older and with more awareness of the condition I have system in place where I do not hide anything from my view and placement of objects are important in relation to their context.

Context & Relevance

I still have a level of context blindness which means that things that are not being used “lose there relevance” (what they are, their use and function in relation to the environment) I may mistake objects for other things entirely and/or be caught up in how they make me feel rather than what they are.

Paul Isaacs 2018

 

 


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Asperger’s Syndrome & Classic Autism? Or Left Brain, Right Brain Autism “Fruit Salads”?

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The late Polly Samuel’s (Donna Williams) through her career had pointed out that firstly autism was adjective a describer of an experience rather than a definer of a person, she also pointed out through her books and blogs that “autism” is different for each person a clustering and multifaceted condition made of different conditions in both neurology  and biology  and contributing psycho-social factors, identity, mental health and environmental factors

Asperger’s Syndrome – Left Brain Autism

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When noting and observing people with Asperger’s Syndrome the part of the brain which is being used to compensate for a disconnect right is the left, people with Asperger’s Syndrome have a condition called social emotional agnosia this means that the person cannot perceive facial expression, body language and tone of voice. Even thought sensory issues may present themselves it would to do with modulation and integration rather than sensory perceptual issues that effect different areas of the brain, faceblindness (prosopagnosia) has a high co-morbidity as well as dyspraxia, alexithymia and literal perception of language. So other words people with AS have to intellectualise in order to compensate for the disconnect in the right.

Characteristics of Right Hemisphere Syndrome: 

– Left visual neglect – an individual may neglect words on the left side of the page or not realize that there are objects on the left side 
– Difficulty with facial recognition 
– Poor awareness of deficits 
– Poor self-monitoring 
– Impulsive behavior
– Poor initiation and motivation 
– Disorientation 
– Impaired attention/memory 
– Difficulty with organization and reasoning/problem – solving 
– Difficulty with social aspects of language (e.g., poor turn taking skills, providing too much information) 
– Difficulty understanding humor 
– Difficulty with word retrieval 

© By Beata Klarowska, M.S. CCC-SLP Monday, July 25, 2011

Classic Autism – Right Brain Autism

When looking at “classic” autism one makes the impression that the person has (and wrongly) a “lower functioning” variant of AS, this could not be further from the truth people with classic  autism tend to to have receptive and expressive aphasia, verbal agnosia, speech/oral apraxia, and a higher rate of visual perceptual disorders such as simultagnosia and semantic agnosia. However introspection is in tact and just look at the poetry and art.

What if my brain injury or stroke is on the LEFT SIDE of my brain?

Injury to the left side of the brain may result in right-sided weakness and the following communication problems:

  • Receptive Language: Problems with understanding spoken or written language (listening and reading)
  • Expressive Language: Problems with expressing spoken or written language
  • Apraxia of Speech: Problems with programming and coordinating the motor movements for speaking
  • Dysarthria: Aspects of the speech system is impacted, which may result in slurred speech or a change in how your voice sounds
  • Computation: Problems with number and math skills
  • Analyzing: Problems with solving complex problems

© 2016 CONSTANT THERAPY

 

Right Brain Left Brain Autism Fruit Salads Image 2017

Differences between Aspergers and Autism ‘fruit salads’?

 In one of my books, The Jumbled Jigsaw, I presented a range of conditions commonly collectively occurring in those with autism and Aspergers. I was asked about the differences between an Aspergers (AS) ‘fruit salad’ and an Autism ‘fruit salad’As an autism consultant since 1996 and having worked with over 1000 people diagnosed on the autism spectrum there are areas that overlap, areas where similar can easily be mistaken for same, and areas that are commonly quite different. Some with AS can present far more autistically in childhood but function very successfully in adulthood. Some with Autism can have abilities and tendencies commonly found in Aspies and some will grow up to function far more successfully than they could in childhood but, nevertheless, when together with adults with Aspergers they each notice that the differences may commonly outweigh the similarities. Generally the more common differences are:

ASPERGERS
originally called ‘Autistic Psychopathy‘(now outdated)
commonly not diagnosed until mid, even late childhood.
lesser degrees of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
dyspraxia
mood, anxiety, compulsive disorders commonly onset from late childhood/teens/early adulthood as a result of bullying, secondary to social skills problems, secondary to progressive self isolation and lack of interpersonal challenge/involvement/occupation.
scotopic sensitivity/light sensitivity more than simultagnosia
most have social emotional agnosia & around 30% have faceblindness but usually not due to simultagnosia
literal but not meaning deaf
social communication impairments, sometimes selective mutism secondary to Avoidant Personality Disorder (AvPD)
sensory hypersensitivities more than sensory perceptual disorders
higher IQ scores due to less impaired visual-verbal processing
tendency toward Obsessive Compulsive Personality Disorder (OCPD), Schizoid rather than Schizotypal Personality Disorder and commonly Dependent Personality Disorder to some level.
higher tendency to AvPD rather than Exposure Anxiety
Alexithymia is common
ADHD common co-occurance but may be less marked than in those with autism.

AUTISM
Once known as Childhood Psychosis (now outdated)
generally there is always some diagnosis before age 3 (those born before 1980 were still usually diagnosed before age 3, although commonly with now outdated terms like ‘psychotic children’, ‘disturbed’, ‘mentally retarded’, ‘brain damaged’.
higher degrees and severity of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
mood, anxiety, compulsive disorders commonly observed since infancy
commonly amazing balance but commonly hypotonia
simultagnosia/meaning blindness rather than just scotopic sensitivity
verbal agnosia/meaning deafness
verbal communication impairments (aphasia, oral dyspraxia, verbal agnosia and associated echolalia and commonly secondary Selective Mutism)
lower IQ scores associated with higher severity of LD/Dyslexia/agnosias
tendency toward OCD/Tourettes, also higher rate of Schizotypal PD, DPD is common and tends to be more severe
higher tendency to Exposure Anxiety more than AvPD
higher tendency toward dissociative states (dissociation, derealisation, depersonalisation)
poetry by those with autism as opposed to AS commonly indicates those with autism can have high levels of introspection, insight
ADHD extremely common co-occurrence

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

Reflective Conclusion

It is simple people need to start looking at the functioning of the brain and how these different systems work for different people. This will in turn create advocacy which is not only meaningful and beneficial but character building and the correct information will give a broader foundation and palette to work from. I have autism (as opposed to AS) not because I am just “saying it” but because of what part of my brain effected.

What I am not saying (and never will say) is that I am speaking for all that would be disservice to many peoples realities. I am fully aware that this may challenge people me saying there are differences however looking at the neurology behind it and Polly’s observations I think there is room for healthy discussion.

Paul Isaacs 2017


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Militancy & Autistic “Culture”- The Dangerous 10 Degrees Of Separation Between People With Autism & People Who Aren’t


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“Autistic Militancy” Created Words & Created Perceptions 

Autism and Militancy The word “Neurotypical” has created a lot of problems in terms of its projection and use over the years. The implication and the “reverse” bigotry that flows with venom towards people who are “not like us” (people who are not on the spectrum) not only burns bridges but causes emotional unrest, invalidation and social-emotional friction that otherwise should not be there. The whole aspect of autism being a “culture” should not give people cart blanche or the freedom to treat others in way which could be deemed predatory, hypocritical and character destroying.

Looking at both camps in moderate and objective way offers a exception of one’s reality and openness to share differing realities, the trails, tribulations, the ups and downs etc.

* Then there’s Moderates (like me, my husband Chris and those on the spectrum and beyond who hang with us).   I have gut, immune, metabolic disorders, a mood, anxiety and compulsive disorders, visual and verbal agnosias, dyslexia and I’m challenged in the info processing and learning departments BUT I’m a master of adapation and I don’t go for cure but I do believe in treatment and management for severely disabling or limited health or sensory perceptual disorders.  So with me ‘normality’ is relative.  You can use the word ‘disability’ and I don’t think it defines all I am.  But I’m more comfortable with ‘disAbility’ and ‘disAbled’ which emphasised that I have many abilities as well as, sometimes because of my disabilities.  I also use ‘diffabilities’, ‘differently abled’ and prefer to use the term ‘challenges’ rather than ‘disabilities’.  When refering to those not on the autism spectrum I avoid calling them NT (I hate that reductionism).   I use the term diversity-friendly as encompassing ALL diversity, not just those with labels (ie gay, deaf etc).  Moderates on the spectrum are content to refer to themselves as ‘on the autism spectrum’ (happy to see ALL humans as having some elements of autism at least at some time) without seeing this as a ‘sell out’.  They tend to see their autism as part of, intertwined with but not the whole of their selfhood.   I use words like ‘support’ rather than ‘help’ (because support is egalitarian not paternalistic).  Militant Culturalists often see moderates as undecided, weak or selling out in the battle to advocate and educate about autism.

Donna Williams

“Culture” vs Objectivity and Realism – Why I dislike the word “NT”

Looking at what “reverse prejudice” is it is no better than what any other prejudice is reducing people to a stereotypical label and all the assumptions that go with it. Why should people off the spectrum be reduced firstly to one word and secondly that they are going to act in a certain predicable way? Also why should that be accepted a projection of hate, dislike is still a projection of hate. There is good and bad in all human beings regardless that is why I do not use the word NT nor do I see autism as a definer of someone’s overall character.

I recently did a tour through which I met some wonderfully kind, enlightened organisers and many carers and professionals who had, humbly, come to learn about alternative realities.

I met some autie spectrum people dotted about the audience, sharing rows with non-autie parents and others and many came up and met me.

At one of my lectures, though, I met some autie spectrum Aspies who came in as a group and sat, almost huddled together, away from all non-auties.

At the end of my lecture I asked ‘did you enjoy the talk’.

The leader of their group replied in a tone lacking in warmth, ‘it would have been better without any NTs present‘. The others chimed in in support of him. Alienated, I left them to it.

Later when they were buddying up with more of the same separatist rhetoric and there was a tone to it that sat uncomfortably with me, a tone I’d heard before, in hierarchical non-autie children in playgrounds once upon a time (where I’d also known nice ones).

I had to let this group know that I simply don’t do bigotry… that my non-autie friends are not typical, mundane, boring or expendable and that I refuse to use any derogatory term that hints they are such, such as ‘NT‘.

As you can imagine, they were quite taken aback. I was meant to ‘understand’. I was meant to be ‘one of them’. But if ‘one of them’ meant I was meant to hang out in a group and dislike or disrespect another group, and share this as ‘belonging’ and ‘shared culture’ and ‘shared understanding’ then this wasn’t ‘me’.

Donna Williams 

Autism has a culture that has been “created” but what people need to be aware of that the the word autism is an adjective a describer of an experience so it doesn’t define one’s own personhood nor humanity. People on the autism spectrum have personality types like ALL other people the main difference is the different types of blockages in expression and modulation. Here is a breakdown of those domains in basic terms –

  • Social Emotional Alexithymia  – The inability to recognise bodily sensation in terms of emotional frequency and trajectory
  • Social Emotional Self and Other Processing – The inability to keep “on track” in filtering one’s own thoughts and perceptions with of another and vice versa
  • Visual Perception I Simultagnosia – The inability to “see” things in the context of their relation to anything else only taking in parts of an image not “wholes”
  • Visual Perception II Semantic Agnosia – The inability to “see” with visual and/or associative meaning
  • Visual Perception III Prosopagnosia – The inability to recognise people by their faces
  • Language Processing Aphasia/Verbal Agnosia  – The level and frequency of word finding capabilities
  • Body Disconnection Oral/Full Body Apraxia – The inability to construct words, sentences in terms of formation

Egalitarianism We Are All Human Beings

If you strip away the passe destructiveness of autism stereotypes, militancy, the group think, separatism, egotism, narcissism and open the door for all realities to be explored by different people, perspectives and realities it would be much healthier and less hostile place. The only “club” I feel apart of is the “human being club” it has a lot of members about 7 billion in total I like it there. Everyone is equal and if realities and opinions are going to be heard/shared there should be a sensible and objective arena for them to be explored.

Paul Isaacs 2017