Paul Isaacs' Blog

Autism from the inside


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Wretches & Jabberers DVD – A Journey Into Autism

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A moving and delightful movie and about two men on the autism spectrum who are both “functionally non-verbal” finding their voices through facilitated and typed communication. Debunking the myths that people who cannot speak with their mouths are “retarded” or “intellectually disabled”.

Tracy and Larry are best of friends and their passion for advocacy leads them to meeting others around the globe who are also yearning and fondly sharing their experiences and voices with a wider audience, showing great empathy, compassion, introspection and deepness through the words that they write to a wider audience. Bringing people into their world and inviting others to think, reflect and reevaluate what “autism” and “intelligence” even look like.  Showing great feats of creativity.

There is warmth, humour, sadness and hope sometimes all at once when listening the candid words and hopefully the viewer will come out of this experience with greater level of acceptance and make less assumptions about what is going on on the “inside”. Please all presume competence.

I highly recommend this DVD.

Paul Isaacs 2017


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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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Autism and Asperger’s Different Trajectories and Different Presentations?

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Today I was doing autism training and in the team was lovely and inquisitive man with Asperger’s Syndrome as the session went on he shared some of his experiences from not picking up verbal cues, being literal and having sensory integration disorder as well as issues with emotional regulation and possible alexithymia.

It amazes me still that people think that “Autism” and “Asperger’s Syndrome” are still considered to some to be the “same thing” when is clear that even if on the surface some of the issues may be similar many of underlying components are very different. If I use both the gentlemen in question and myself as examples so here goes.

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  • The gentleman seemed to display a level of Social Emotional Agnosia which meant he struggles with non-verbal cues, tone of voice and facial expression he acknowledged that he use past experiences to build up a format of how to understand someone
  • He didn’t have Prosopagnosia (30% of people with social emotional agnosia do so)
  • He was literal in processing of verbal language and seemed to have less impaired visual-verbal processing
  • Possible Alexithymia which is “knowingness of your own emotional states”
  • Seemed to mentalise in a more logical, literal and pragmatic manner which suggests the use of the “left brain” person.

With Myself

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  • I have a mixture of Simultagnosia (Object Blindness) and Semantic Agnosia (Meaning Blindness) which means my visual field is fragmented, distorted and incoming visual information does not have any meaning, context or reasoning
  • I have Prosopagnosia (Faceblindness) as an extending of the already existing issues around visual perception meaning I “recognise people” primarily by patterns of movement and voice
  • I have a level of Receptive and Expressive Aphasia (Meaning Deafness) which even in its current residual form means I “lose” the ability to keep up with interpretive verbal information and struggle with visual-verbal processing
  • I have less literal, logical and pragmatic style of thinking or organised thoughts  I am very much a “right brain” person.

 

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I was asked what I thought the main different feature was between Autism and Asperger’s. I think you’ll maybe find in reading through the site on brain hemisphere specialisation that there are many Aspies who may be better at left brain stuff and many Auties who may be more right brain but not nearly recognised for the abilities they do have as much as they are recognised for the left-brain abilities they don’t have. Whilst most people have a balance of both abilities, being extremely one side or the other clearly means the abilities of that other side are far less practiced. Processing incoming information in a non-Autie manner usually involves using a good balance of the two. So feel free to try the test yourself.

Donna Williams

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Different Trajectories 

Maybe its is because I spent large part of my infanthood exploring through my senses and/or through patterning, theming and feeling struggling to get a sense of what “interpretive information” is and what it means? To be around such information and how to connect all the dots within in my mind. However I appreciated and acknowledged the validity of it in my previous blog post.

I flourish in areas of typing, writing poetry and creativity I love wordplay, sounds,  pitches and the seemingly infinite kaleidoscope colours, shapes, textures and shines they “talk to me” as much as next person.

Things Foundly Remembered

I saw your face with my hands

A voice a distant echo but foundly acknowledged

The smell of the wise tree in the garden the leaves did dance

A new place everywhere to be eagerly explored upwards and onwards

Flomping along the globblyness unstuck and unshackled my hands are free

Looking at the gloaming and silvering shape what plotunes and envelopes my soul

I thank you old friends you are me and I am likewise swashing around in the ink clouds

 

Paul Isaacs 2017

 


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Not Proud Nor Ashamed – Balanced About Being On The Autism Spectrum

Premature 1I Was Born A Human Being

I was born in 1986 and as far as I know I was born a human being just like the 7 billion other people on the this earth and of course I had my issues related to autism not being able to speak, not seeing the world as a coherent whole, faceblindness, receptive and expressive language disorders, oral apraxia, hemiplegia and list goes on. These thing are not “me” being face-blind isn’t me, being aphasic isn’t me and  being hemiplegic isn’t me either.

Autism A Describing Word

“Autism” is describing not defining for some people autism is a culture a place to be in and around a shared culture, however I do not believe that autism is a culture but has been created as such and maybe the question is who created culture? What rules apply? What rules don’t? What is “autistic”? What isn’t “autistic”?

I often wonder I feel however so more closer to being a human being then defining myself by one word which means different things to different people.

When I was formally diagnosed in 2010 with autism I was told by my parents that you are still “Paul” and this diagnosis only changes one thing that you aware of what difficulties you have had.

Autism Is Apart Of? Not The Defining Factor? 

I would agree with them and be understanding my autism and as clustering of differing conditions I was able to piece together my “autism” not as I saw fit but looking at deeply and introspectively enough to understand myself and hopefully empower others.

I know what autism is for me it is apart of not the defining factor I feel indifferent and balanced about what it means. I have done enough research and consultancy work to know that personality types, co-conditions, environmental factors, metabolic disorders, auto-immune disorderslearning types and communication styles,  will have an impact on the presentation of one’s “autism” so what does that mean?

  • Not one intervention works for all
  • Not all the issues are the same despite have a similar and/or same diagnosis
  • Not all people with autism have the same wants, needs, or desires
  • Not all people on the spectrum have the same communication profiles
  • Some people on the autism spectrum have auto-immune and metabolic issues which impact on functioning
  • Some people with autism have dietary disabilities which impact on learning and information processing 
  • Some people on the autism spectrum will have undiagnosed personality disorders and mental health co-conditions that keep being called “the autism” when they are not

I AM autistic but I HAVE immune deficiencies, I HAD cancer (apparently I can’t actually un-have it, its called remission) , I HAVE Ehlers-Danlos Syndrome… I also HAVE visual perceptual disorders, I HAVE language processing disorder, I HAVE mild learning disabilities.

I do not feel I AM these things, they are not ME, they walk alongside of me, often as parts of my autism, and whilst I AM autistic, just as I AM immune deficient, and I AM mildly learning disabled, Autism is not the sum total of who I am, it does not define my entire being or personhood, even if my personality traits are archetypally relatively ‘autistic’, I remain a person WITH autism… someone who HAS autism and, ok, IS autistic. The rest is war mongering militant separatist fascist crudola

– says Groucho
“PLEASE ACCEPT MY RESIGNATION. I DON’T WANT TO BELONG TO ANY CLUB THAT WILL ACCEPT PEOPLE LIKE ME AS A MEMBER”.

Polly Samuel 2013

Overall autism is not the defining factor of my me. My personhood that will always shine first not because I am ashamed of my autism nor because I am not proud of it either I remain balanced in what that means it gives me clarity and sanity. I am a human being first.

Paul Isaacs 2017


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Autism “Specialism”, Personality Profiles, Reverse Bigotry & Being Human

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Many times people often focus on the person’s autism as all of “them” this means that the “autism” is the reason for all of their behaviours, reactions, actions and motivations. If you are on the autism spectrum you may well be aware of autism “stereotypes” such as an overtly logical, literal processor and extractor of information. If this is true in some cases it is far from the bigger picture and is far from the broader palette that is actually out there.

Let’s look at three examples of differing personality types

For the person with a Idiosyncratic personality type not fitting in a running along their own path maybe something that has brought them joy and/or isolation by “dancing to their own beat”, being naturally non-conformist, inventive and intuitive.

The Idiosyncratic Personality Type believe that your interests lie in (Oldham, pg. 252):

  • not being like anyone else
  • marching to your own beat
  • being unconventional
  • being original
  • standing out from the crowd

For the person with a Conscientious personality type they may be fixed on being productive, useful and striving for success the fear of failure and self loathing could hinder their development for continued perfectionism, however being pragmatic and ordered in nature along with highly motivational work ethic has its benefits.

The interests of the Conscientious Character Style include (Oldham, pg. 62):

  • having strong moral principles and being certain
  • not resting until the job is done and done right
  • being loyal to families, causes, and superiors
  • working hard to do well
  • achieving and accomplishing things
  • loving to work and be challenged

 

For the person with a Solitary personality type being focused on being alone, in a “inner world” and not be swayed by praise, acknowledgment or criticism this may come with a lack of social and emotional development however their comfortable observations of the world offer patience, tranquillity and healthily reserve.

The interests of the Solitary Personality Type include (Oldham, pg. 275):

  • not needing anyone but yourself
  • being unmoved by the crowd
  • being free of the need to impress and please
  • being free of emotions and involvements with others
  • having clarity of vision rather than sentiment and intimacy
  • discovering and recording the facts of existence

The Problem With “Specialism”

Nobody is better than anyone else and that accounts for people on the spectrum too. I strive for balance, objectivity, kindness, empathy and equality. If someone is going to be militant with the focus being that people off the autism spectrum are collectively “wrong” then reverse bigotry is still bigotry and doesn’t into the framework of empowerment it creates more divisions, voices, lost, realties not acknowledged that in not progress but quite the opposite.

Personality types and the richness of them are for all people to share I have noted that mine are idiosyncratic, serious, mercurial and self-sacrificing by narrowing your bandwidth and not acknowledging that personality types have much to about development as the neurological and biological challenges means you are missing the fundamental part of “humanness.”

Promoting equality in difference and diversity, is what I believe in and I’ll strive for the opportunity to do that, wherever I find it.

Any derogatory or dismissive stance relating to non-autistic people as a group is no less a form of prejudice as any in history.

Polly Samuel

Autism, Personhood, Personality Types and Identity

Theses aspects of a person/human being  are different for all but at the same time very real so if someone’s “autism” is just seen as “collective autism” in other words all the “traits” are “autistic” then that reductive way of perceiving will mean that the personhood and associated traits may well be ignored. This will have an impact of self-identity, self-worth and could potentially push these personality types into “disordered extremes” impacting on functioning further.

Looking at the full package of autism that does include personality types and disordered extremes and the inter-relation that have on the person’s perceptions, mental health, identity and reactions to environment.

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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Managing Grief and Loss with Visual Perceptual Disorders

Note this is from a personal perspective

Grief is a normal state to be in when you lose someone you love and have connected to and I know that this feeling or more accurately abundance of differing feelings that accompany it are part of the process.

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Visual Agnosias – Deficits In Memory Perception & Visual Association? 

I have no pictures of my Gramp none that “spring to mind” I cannot “visualise” or have pictures in my mind my “meta-reality” (a person’s inner world/consciousness)  is not made of pictures or movies as a form of association. It is made of of smells and textures I made a point when I said goodbye to my Gramp at the chapel of rest to stroke his face and hair so would have a physical association of the firstly the bond we had and secondly my way of saying goodbye to him and his body.

Paul Isaacs communication profile 2017

Bereavement Counselor 

I went to see a bereavement counselor today and I was thankful that he was able to assist me not only in the human element of my grief but also adapt his way of describing different interventions and explanations to me.

 This is what he used in  the session 

  • Contextual telegraphic language “painting his words” with gesture and placement and meaning
  • Allowed time for me to do “all self no other” and “all other no self” in order for me to express and receive the information
  • Compartmentalised my  own emotional states giving them a reference point and also suggestions in how to manage my emotions
  • Understood I have a history of mood, compulsive and anxiety disorders associated with somatisation disorder
  • Allowed me to be creative in expressing my emotions through creative writing, poetry and art

 

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Addressing The “Pieces” Of The Jigsaw

So what parts of my “autism” are being addressed?

  • I would say firstly his looking at a level of information processing delay and giving me time
  • The next would be that fact that because of visual perceptual disorders having a level of visual agnosia in the areas of meaning (semantic), object (simultagnosia) and faces (prosopagnosia) means that using gesture, placement and telegraphic language backed up with word emphasis in the right areas helps me internalise the words better assisting with the level of aphasia I have
  • Looking at my own emotional states is assisting with alexithymia and overall giving me time to integrate “self and other”.

 

Conclusion 

I would say that my grief is human and that I will get through this with at times very basic but meaningful interventions I do however hope this helps people with similar issues to my myself regardless of being on the autism spectrum or not.

 

Paul Isaacs 2017