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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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

Related image

 

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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“Idiosyncratic Language” & “Stored Language Responses” in Autism

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Note this is from a personal perspective

Sometimes language in terms of interpretation can be difficult to “use” and “explore” however it may not be a true representation of the “inner world” the person is living in.

Words could come out stilted, mixed up and not in order and if the order is there it may take a lot time to form and lead into a strand of information. When my language was in its earliest “fruits” it was mixture of echolalia which I got from movies, sounds, movements, pitches and dominated my mind but trying to learn “interpretive language” was  “forced” and came from a  “stilted “place”.

  • Give the person time to process the information if the person has a level of Aphasia, and/or Verbal Agnosia
  • Allow time if the person has a level of motor coordination issues such as Oral Apraxia, Body Apraxia and/or Body Agnosias
  • Try using Gesture, Tone, Inflection and Objects of Reference
  • Understand were the stored language is coming from – Exposure Anxiety, Problems with Integration “self and other” in conversation, Body Related “Highs”, Mood, Anxiety, Impulse Control, Selective Mutism and/or Emotional Regulation 
  • See the Person First and Presume Competence

Before functional speech it a swill of verbal and visual information that I could not grasp nor mentalising in a fashion which was tangible my “inner world” was very much there but is was struggle to get it out I didn’t have a lot words to use in my mind as it was endlessly swirling and as I got older (before my later infant years) I was slowly building a firm repertoire of words and has a lot I want to say but couldn’t.

When functional speech came at the around the ages 7/8 the it was expressively of a three year old (in developmental, content and constructional presentation) however this “voice” that seemed to be more “fluid” scared me and frustrated me at the same time as it still didn’t represent my “inner world” I was torn between complex stored responses the basics of “interpretive speech” and wanting to cut off from verbal speech altogether not being able to “hold” mental images of words also delay many aspect of my language but painting and drawing in many ways we’re a creative and communicative effort it created a bridge.

I certainly did not have a Asperger trajectory when it came to expressive and receptive language and getting the point of verbal and contextual significance so when I get tired and my language processing goes down. 

  • Speech will become slower and fragmented
  • I will have consciously find “interpretive speak” words
  • Sentence construction and word placement will be mixed
  • I will get “stuck” on a word and/or sentence focusing on how it sounds

I still type more words than I verbally “speak” however I am grateful that I can and I try and use it to the best of my efforts in fact typing has allowed me to express my emotions with much more clarity, cadence and deepness.

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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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, Emotions, Attachment and Borderline Personality Disorder

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Borderline Personality Disorder can be a difficult condition to live you may struggle to be “in your own skin”, have issues with “identity” and purpose in life, with other people and may flip-flop between different aspects of what you perceive your identity to be. Your emotional input-output may well disruptive and hindered.

Borderline personality disorder (BPD) can cause a wide range of symptoms, which can be broadly grouped into four main areas.

The four areas are:

  • emotional instability – the psychological term for this is ‘affective dysregulation’
  • disturbed patterns of thinking or perception – ‘cognitive distortions’ or ‘perceptual distortions’
  • impulsive behaviour
  • intense but unstable relationships with others

Emotional Dysregulation 

These four main areas may well vary from person to person and emotional instability and modulation may make you vulnerable to teasing and bullying in your early years as the reactions may well be more extreme and unpredictable in nature, you may push people away without realising or cling on to friendships that aren’t there. This can lead to internal problems with modulating one’s own emotions.

Cognitive Distortions, Dissociation & Psychosis

Cognitive distortions can come in many forms and affect how you deal with in particular negative emotions you may “lock them away”, project them through self-harming, other aspects that can distort reasoning are episodes of psychosis and a breakdown of internal and external reality this may be accompanied by episodes of dissociation.

Impulsivity & Challenges In Friendships & Relationships 

The person may want these aspects of life but maintenance for both you and the person you are friends with could be hindered by the symptoms above the changing winds of emotions, a lack of grounded identity and purpose, disruptive and sometimes paranoid thinking and firm and often “black and white” sense of what relationships and friends “should and shouldn’t be”, fear and loss and may have issues with attachment with people around them.

Coming Out The Other End?

I have documented my mental health issues over the years which includes having Borderline Personality Disorder and how that interacts with  the overall package within my “autism” and this is how of have dealt with these negative and sometimes behaviours.

  • People have their own thoughts, feelings and identities and one must respect a person’s autonomy.
  • Grounded sense of “self” I am a whole person with the ability to change.
  • Emotions are human and therefore not “abnormal” and are part of the human existence and managing them is crucial for healthy relationships.
  • All friendships and relationships are unique in their creation some last a lifetime others don’t and one must accept this.
  • I can help and empower people but not overbear them or smother them.
  • Seeking balance has a positive impact in your overall life and existence.

 

Darth Vader shows the key features of BPD 

  • He fears loss of people he is closest too. The Death of his Mother and not having a Father figure
  • He has intense and unstable relationships with the people he loves. His love for Padme and his and Father-figure friend Obi-Wan
  • He suffers from emotional dysregulation and has feelings of intense fear, rage, sadness and sorrow.  “I Hate You!”,  “Where is Padme? Is she safe is she alright?” 
  • He displays impulsivity and cognitive distortions through manipulation of Chancellor Palpatine. “In your Anger you Killed her (Padme)”
  • He has problems with self identity switching from “Anakin” to “Vader”. 

 

I have documented that when dealing with autism you must look at the rounded view that personality types and thus personality disorders can be a part of the package and if this is the case maybe we should looking a little deeper into what that means when managing a person on the autism spectrum who is in emotional crisis and the services that can be provided in the future.

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.

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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