Paul Isaacs' Blog

Autism from the inside


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Autism As A Describer Not a Definer – Combating “Label Lust” and “Overidentification”

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I have been an autism and advocate for over seven years I have seen many autism “fruit salads” in my time some people with auto-immune problems, other with complex mental health issues, others who see their autism as a curse, others who see their autism as special and unique, others who identify as their whole being as “autistic” others who don’t. I have seen militancy and anger towards people who go against old rhetoric who propose realism as opposed to glamorisation, people should allowed to give their own perspective from different angles, perspectives and offering multiple realities. 

Differing Profiles

With all the the “pieces” I describe in my training sessions and/or presentations are “describing” words the reality for that person will differ from “piece to piece” however that “piece” will have its own name and describing it allows the people understand a fragment of it albeit from a personal and/or observational perspective. Its hard to get the balance right but it is worth it.

Definition vs Describing vs Identification 

It isn’t defining people by the labels offered which is from an educational, resource perspective and even a self-reflective perspective. It is offering a window of what could be going on. I am not the speaker for all (never have been) but I put the questions out there.

 

Human Beings First

If we (as human beings) all defined ourselves by a set of labels it would be rather reductive and in reality a real shame. At the end of my sessions I offer a reality that despite the differing levels of “pieces” and/or disability  they are not defined by  their condition, they are human beings first like everyone else.

Paul Isaacs 2017

 


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Future Diagnosis’ – A Further look Autism and Asperger “Fruit Salads” & The Inner Mechanics

The Changing Landscape of Autism Diagnosis

Looking how the scope of how the autism diagnosis has changed over the decades here is an overview

  • 1940s and 1950s – Autism was considered a form of attachment disorder
  • 1960s – Autism was considered a form of “childhood psychosis”
  • 1970s and 1980s – Autism was considered a form of mental retardation
  • 1990s – Asperger’s syndrome was added as a diagnostic criteria
  • 2000s to now – Autism and the impact of sensory integration issues

The truth is autism is has different trajectories and components it is best to look at autism as 3 dimensional a stacking of pre-existing syndromes/conditions/disorders that are person-specific.

So let’s look at the breakdown between “Autism” and “Aspergers” Fruit Salad looking at through the lenses of Donna Williams’ analogy.

 

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Autism “Fruit Salad”

 

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Aspergers “Fruit Salad”

 

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Conclusion

On the surface “Autism” and “Aspergers” may appear the “same” but digging deeper and looking at the profile differences and what makes up the differing profiles surely means that the wants, needs and interventions will be specific to the person in question and what they need will not be the same. Autism is not a generic “one size fits all” condition it is made up of many different elements specific to the person.

It is my wish that in the future when some is diagnosed with autism they will look a the full package this would include potentially different professionals being involved if differing diagnosis are willing to be made such as –

  • Speech and Language Therapists
  • Neurology Specialists
  • Dietary Specialists
  • Genetic Counselling
  • Gut, Immune and Metabolic Specialists
  • Mental Health Psychologists & Psychiatrists
  • & Other Empowering Interventions

 

Paul Isaacs 2017


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Autism, Alexithymia, Body Disconnection, Mental Health & Loss

Tulips

 

Note – This is from a personal perspective

In short space of time two people dear to me had sadly passed away my Gramp Gilbert Harpwood and my friend Donna Williams (Polly Samuel).

I knew that because of alexithymia I would find this process lag and that I wouldn’t be “emotionally connected” straight away this led me to going day to day with no sort of emotional context at all despite showing on the surface seemingly “connective” emotions they were not connecting with me on the inside.

Alexithymia /ˌlɛksəˈθmiə/ is a personality construct characterized by the subclinical inability to identify and describe emotions in the self.[1] The core characteristics of alexithymia are marked dysfunction in emotional awareness, social attachment, and interpersonal relating.[2

Expression Of Grief

After the month and half since my Gramp’s loss and not long after Polly’s I started getting pains in my arm, stabbing and throbbing like a vice was clamped on my left arm. I quickly ruled out tetanus (which is serious bacterial infection) this then progressed into neuropathic – like  pain which was shooting from my neck, jaw, arms, legs, feet and groin “settling” in places for minutes and hours with a “warm”, “tingling” feeling as it moved.

I know this based on having a family history of mood, compulsive and anxiety disorders many things came into place as well as somatisation disorder which is a pseudo pain diversion.

Anxiety and Somatic Disorder

Somatic symptom disorder occurs when a person feels extreme anxiety about physical symptoms such as pain or fatigue. The person has intense thoughts, feelings, and behaviors related to the symptoms that interfere with daily life.

Anxiety Neuropathic-like Symptoms

Anxiety doesn’t actually create peripheral neuropathy. While anxiety and stress have been thrown around as possible issues that lead to neuropathy, peripheral neuropathy is about nerve damage, not nerve symptoms, and since anxiety is unlikely to cause nerve damage, it can’t technically be peripheral neuropathy.

Dermatillomania (skin picking disorder)

Dermatillomania may be a reflection of a mental health problem. Psychological and behavioural theories suggest that skin picking may be a way of relieving stress or anxiety.

A Dolly Mixture Of Mental Health Conditions

I  know that I have mixture of differing overlapping co-conditions going with my mood disorder being an understandable and normal reaction to grief, skin picking and impulse control disorder which has resulted in my hair being riddled with scabs which is my sub-concious at work, to having excess adrenaline  that is being “stuck” in my body from time to time.

Externalising To Process My Own Emotional States

The alexithymia and associated problems that go with such as body disconnectivty (body agnosias and hemiplegia)  leaving me detached from my own emotional states leaves me also waiting for the emotions to come at a frantic, unprocessed rate leaving me to pick up the pieces of the jigsaw puzzle. I have created my own strategies such as writing, poetry and art which help me externalise and thus connect with my own emotional states, thoughts and feelings.

Visual Perceptual Disorders and Mentalising

Another aspect is the visual perceptual disorders which includes simultagnosia (object blindness) assoicated with prosopagnosia (face blindness) and semantic agnosia (meaning blindness) which I have that means my memory isn’t “visual-assoicative ” and I have no “pictures” of “emotional association” so my “meta-reality” (which all people have) has to be externalised.

Remembering

I know that with the slow realisation of my internal states will aid me in the this journey which is a normal journey for human beings, remembering people fondly, the good times, the laughs, the smiles and interactions.

Paul Isaacs 2017


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Diagnosis – Looking At What “Autism Is” Is That The Future?

I have been is the autism “world” as a speaker, trainer and consultant for well over seven years, I do not pretend to know all the answers nor I do project or promote that I have them all I can only speak from first hand experience of myself and the others that have been involved in professional capacity.

A 3D Diagnosis For The Future?

I what would like to offer a foundation of empowerment not because I know best but to give people the opportunity to find out about their “autism” what is made up of and the “mechanics” that go with it.

I have wrote and documented my autism the fact that is made of being brain injured at birth, speech and language delays, sensory agnosias, aphasia, apraxia the fact that I have dealt with mood, impulsive and anxiety disorders also.

Information processing such as

  • Sensory Agnosias (being Faceblind, Object Blind and/or Meaning Blind)
  • Attention deficits (ADD, ADHD)
  • Learning Disabilities
  • Apraxias (Oral Apraxia, Fine and Gross Motor Apraxia and Dyspraxia)
  • Aphasia (Receptive, Expressive and Mixed)
  • Gut, Immune and Metabolic Disorders
  • Tissue Connectivity Disorders
  • Seizure Disorders
  • Mild Brain Injury (Affecting Developmental Pathways and Trajectories)
  • Sleep Disorders

Identity 

  • Development (Gender, Sexuality, Self Perception, Environment, Viewing yourself and as a “child”, “teenager” or “adult” regardless of chronological age)
  • Adjustment (Family and.or Personal Environment)
  • Disorder Extremes (Personality Types/Traits that are not balanced causing problems with overall functioning)

Psychiatric Co-Morbids

  • Mood Disorders (Emotional Dysregulation
  • Anxiety Disorders (OCD, Social Anxiety, Generalised Anxiety)
  • Psychosis
  • Impulse Control
  • Attachment Disorder
  • Dissociative Disorders

Enviroment 

  • Dietary/Nutrition Disabilities
  • Morning the Child
  • Isolation/Alienation
  • Learned Helplessness (Dependency Personality Disorder/Co-dependency)
  • Presuming  Incompetence
  • “Cat” People vs. “Dog” People (Exposure Anxiety. PDA, ODD RAD)
  • Eating Toothpaste (Gut Disorder and Fluoride Toxicity)

Human Variants of Learning

  • Visual
  • Verbal
  • Logical
  • Physical
  • Aural
  • Solitary
  • Social
  • Mixed

The fact that being borderline made me emotionally unstable, struggled with boundaries and also being schizotypal made me odd, aloof and detached from people and at times society. These “elements” are all about of my “mix” and words not only for these “pieces” empower not only the person in question but the services they come into contact with also family and friends.

 

Fruit Salad 2017

 

Looking Deeper, Looking Forward, Education & Empowerment

I went through my autism “fruit salad” at an event recently and asked if the diagnosis had pointed out the specific pieces how would they have felt? Also would this model benefit them I came to the conclusion yes because understanding  that the word “autism” isn’t  one thing but understanding the pieces of their children’s autism was felt to be very important, helpful, empowering and overall was a beneficiary to the services that they would come in contact with. Giving them not just the word “autism” but what it meant for them specifically.

My Autism Fruit Salad 1 Updated 2017

Autism Fruit Salad 2 2017

Autism Fruit Salad 3 2017

Autism as “Fruit Salad” Video by Donna Williams 

http://www.interactingwithautism.com/section/living/donna

 

Conclusion

“Autism” is not “one thing” it is specific to each person also people do not have an “autistic personality” exclusively although personality types like solitary, idiosyncratic and conscientious would look more “autistic” but are smaller elements in the overall mix.

I do not believe that a person’s autism is everything about them because human beings are made up much  more than one element/label/word.

You can get  “non-autistic” personality types the people that challenge the stereotypes who could be equally adventurous and mercurial in their ways. For 2017 lets look at this from a broader perspective and empower people with knowledge that is worthy of making a difference.

I am not negative about autism but I am realistic and grounded about what the word means. By finding out the mechanics of what is going that is a positive approach to leading a more fuller, healthier more balanced life.

Paul Isaacs 2017


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The Importance of Recognising Personality Types In Autism

Note this is from a personal perspective

Personality types are just as relevant to in which a person behaviours and responds to the environment around them, this includes interaction, communication, lifestyle choices, interpersonal choices etc.

Personality Types A Mix & Match

We can break down these personality types into their basic forms. In example I will use three different personality variants (people can have to 4 to 6) however this will simplify the point in question.

Personality Types in Autism 2017 Image

Personality Types Are Valid 

People on the autism spectrum will have personality types within their “autism fruit salad” like all other human beings people have overlapping personality types which can be fluid or concrete, complex or refined, narrow or lengthy which will be dictated by genetics and the environment they are in. They can also spill over into “disordered” extremes.

Is “Autism” All Of A Person? 

 I think that the main factor that gets missed in the overall ensemble when looking at ASD is personality traits/types. To define one’s whole neurology as one’s “self” ego-syntonic were as I see my neurology in terms of autism as part of “self” not the overall picture “ego-dystonic”.

This would surely help professionals, parents, guardians and people on the autism spectrum? To know that part of being a human is to do with the development of these aspects to?

“Autism” It Is Apart Of The Mix Not The Defining Factor 

To put in honestly that fact that I am face-blind isn’t “me” it is just how I processing faces, the fact that have simultagnosia as see in pieces isn’t “me” but is how I process visual information, the fact that I am aphasic and meaning deaf and struggle at times process the words being spoken to me isn’t “me” but is how I deal with receptive language they are part of the package, the fact that I struggle to do simultaneous “self and other” isn’t “me” but it means I need time to gauge and internalise information is again part of the package .

They come along for the ride and my personality types will dictate how I cope, manage and productively find an outcome for these different processing issues I have. If someone isn’t seen as person first then what are they?

Paul Isaacs 2017


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Autism -The Three Stages of Empowerment

Autism “Fruit Salads”(© Donna Williams 1995/2005/2014)

This is bottom to top analogy which implements all aspects of what could be in a person’s “autism fruit salad” to start off with the foundation is to understand the mechanics of what is within a person’s “autisms” (rather than autism). By looking at this we can separate it into these aspects.

  • Communication profile
  • Social-emotional profile
  • Emotional processing profile
  • Sensory Integration profile
  • Sensory Perceptual profile
  • Receptive Language profile
  • Expressive Language profile
  • Motor-coordination profile
  • Dietary profile
  • Auto-immune disorders profile
  • Learning styles profile
  • Personality types profile
  • Identity profile
  • Co-conditions profile

Interventions

These will be tailored to the specific needs of person’s profile/profiles looking holistically as well as professional for empowerment, guidance, social support, emotional support and/or any aspect of the person “autisms” that is within the mix. For example you could have someone who has exposure anxiety and dislikes direct confrontation and prefers an indirectly confrontational approach, is profoundly meaning deaf and aphasic. Think how you would build up that person’s profile and empower them?

An example

  • Gestural language
  • Aiding Mentalising by building up meaning and association
  • Being a follower not a leader or an expectant doer
  • Leave them wanting more and giving positive affirmations

Solutions

They will come in many forms as they marriage of each step relies on the one previous with regards to the “final step” this will be looking at what is working, aiding and empowering the person, their families, guardians etc. This could be put in an report or functional document for educational and professional services to have or it could be used as an information pack for friends and family the choice is yours.

Remember autism is not ONE THING it is a CLUSTERING of pre-existing conditions within one PERSON and that is the thing to realise that one person’s reality does not mean that is representational of all because that would mean a lot voices and realities would be left unheard it is time to change the landscape and starts with being open minded.

Paul Isaacs 2017


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

 

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

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

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

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

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

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

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

Source: Paul Isaacs: Living Through the Haze