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 “Culture”, The Word “NT” and Militancy

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If people are representing one has to think about is it for other people? Self-service? Advocacy? Empowerment? Information sharing? 

Militancy Is it “Normal”?

If militancy is perceived as the norm then who is that actuality helping? Assisting? Or otherwise is this the new phase that becomes relevant before it becomes redundant and passe?

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

If this is the case what example is being set? By noting ones perceived superiority or “specialism” over others is still bigotry, separatism and creates more waves of the old “them and us” which doesn’t represent inclusion, empowerment, reality-sharing or otherwise. Which burns bridges more bridges than it claims to build.

The Word “NT” It Isn’t Helpful

I have come to believe that the word “NT” is not only unhelpful  and has been projected in such a way that would imply that other people who fit this “label” are “typical” therefore one could perceive that word as “boring”. I find this not only hypocritical but also a mystery because in truth there is no such thing as a “neurotypical”.

Autism “Culturism and Militancy”

The English word militant is both an adjective and a noun, and is usually used to mean vigorously active, combative and aggressive, especially in support of a cause

One cannot cherry pick what autism is and isn’t as a shared collective that is same for everybody in the truth autism in its presentation and reality is different for each person so in order to advocate and empower you have to be aware that the only reality you can share is your own and be humble and conscious enough to say that. To allow other people’s realities to relevant you cannot speak for all, to empower you cannot project “reality sameness”  because no human being is the same.

No One Should Be Defined As One “Label”

Can anybody be defined by one factor? Can anybody describe themselves in one word? I do not define myself by my “autism” it is certainly apart me but it isn’t the driving factor at all. When I was born I was born a human being and all that comes with it I live as a human being. There is much to be said about in the end being emotionally grounded, considerate and realistic.

Egalitarianism – The Way Forward

Egalitarianism (from French égal, meaning ‘equal’) – or equalitarianism[1][2] – is a trend of thought that favors equality for all people.[3]Egalitarian doctrines maintain that all humans are equal in fundamental worth or social status,

My wish is that in order for this to work people must consider all realities, perspectives, opinions and input in a constructive manner that is overall beneficial.

Paul Isaacs 2017

 

 


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A Humanistic Psychological Approach To Autism

maslow's hierarchy of needs five stage pyramide

 

Humanistic, humanism and humanist are terms in psychology relating to an approach which studies the whole person, and the uniqueness of each individual.  Essentially, these terms refer the same approach in psychology.

Humanism is a psychological perspective that emphasizes the study of the whole person. Humanistic psychologists look at human behavior not only through the eyes of the observer, but through the eyes of the person doing the behaving.

McLeod, S. A. (2015). Humanism. Retrieved from http://www.simplypsychology.org/humanistic.html

Looking at whole person means you look at every aspect of the person and how what is going on lets look at this in the context of autism

  • The Environment (social connections, relationships, friendships)
  • Personality (development of personality, traits, types and “disordered extremes” which also connects with communication styles, wants, needs, desires, aspirations etc)
  • Education (types of learning, style of learning, solitary, social, mixed)
  • Information processing (delayed, mixed, information overload)
  • Language processing (literal, aphasia, semantic pragmatic disorder)
  • Sensory integration (over or under processing/integration of sensory input)
  • Sensory perceptional (face-blindness, meaning blindness, object blind and other associated perceptual disorders) 
  • Emotional regulation and perception
  • Mental Health (mood disorders, attachment disorders, dissociative disorders, impulse control disorders, psychosis)
  • Identity (male, female, non-binary, hertrosexual, homosexual, bisexual, asexual etc) 
  • Co-dependency (dependant personality, passive-aggressive personality and attachment) 
  • Dietary Disabilities (food intolerances, food allergies, chemical imbalances)  
  • Metabolic disorders
  • Auto-immune disorders
  • Seizure Disorders

Holistic Psychology

Holism refers to any approach that emphasizes the whole rather than their constituent parts. In other words ‘the whole is greater than the sum of its parts’. Qualitative methods of the humanistic approach reflect a holistic position. Social psychology also takes a holistic view.

A holistic approach therefore suggests that there are different levels of explanation and that at each level there are “emergent properties” that cannot be reduced to the one below.

Reductionist explanations, which might work in some circumstances, are considered inappropriate to the study of human subjectivity because here the emergent property that we have to take account of is that of the “whole person”.  Otherwise it makes no sense to try to understand the meaning of anything that anybody might do.

McLeod, S. A. (2008). Reductionism and Holism. Retrieved from http://www.simplypsychology.org/reductionism-holism.html

I would say with working in the autism field for over seven years you must look at all the factors and how the interact with EACH OTHER such as personality development for example will dictate how  people react and however the underpinnings are to do with biological, psychological and environmental factors.

All Voices are Equal

All voices and perceptions are equal and that means that differing realities, perceptions and knowledge has to be taking into account so that can be. There should be no “them vs us” or segregation burns far too many bridges. This can be from differing realities such as neurobiology, auto-immunity and metabolic disorders, dietary needs and many more.

Listening, Empathy and Autonomy

Self-worth, self-esteem, self-perception are to do with how we feel about ourselves in relation to others and how other’s feel in relation to you here are simple aspects of that.

congruence

  • Trust (Building stable, balanced and honest friendships and/or relationships)
  • Empathy (Showing genuine kindness, assertion and care which is balanced, contextual and meaningful)
  • Listening (Acknowledging the person as a human being first through listening to their wants, needs, desires and aspirations) 
  • Being Non-authoritarian and egalitarian (Show through example, intention and meaning that being equal is the standard stetter nothing more or less)
  • Allow for growth and developmental, psychological and environmental changes  (Change is good it can be progressive, assertive, connective, inspiring and fun)
  • Everybody is a person (Be non-judgmental, objective and constructive the key for allowing growth is to see the person first) 

 

Fruit Salad 2017

 

What makes each person with autism so different from each other?  How do you learn to ‘speak autistic’?  What are the low cost and no cost strategies to help people with autism manage their own particular collection of challenges?

Published in 2005, The Jumbled Jigsaw is an easy to read, ‘quick dip’ self help manual on the ‘Fruit Salad’ model of and approach to the navigation and management of autism.  It exposes autism spectrum disorders (ASDs) not as single entities but as a combination of a whole range of often untreated, sometimes easily treatable, underlying conditions. Exploring everything from mood, anxiety, obsessive-compulsive and tic disorders to information processing and sensory perceptual difficulties, including dependency issues, identity problems and much more, it demonstrates how a number of such conditions can combine to form a ‘cluster condition’ and underpin the label ‘autism spectrum disorder.  Most importantly it gives case study examples and clear strategies for management of each piece of autism spectrum ‘fruit salad’.

Donna Williams 2005

My Conclusion is that looking at the “bigger picture”, “the whole person” and the interacting components form an “inside-out” perspective means that you can potentially enrich and EMPOWER people live giving the them the building blocks to make choices, self-assertion, independence and self-worth.

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, Words, Aphasia, Body & Visual Agnosias

Sound Asleep

Note this is from a personal perspective

Aphasia and Words

Words in my mind felt ethereal, transient and distant the internal garbel of sounds, pitches, tones, hums and inflection as if my unconscious mind was trying so desperately to find the words, string the sentences anew to project and receive in “real-time” on some level I believe in my later years that is what I was trying to do. The jumble of a “salad of letters” in my mind could be found and then lost in equal measure.

Oral Apraxia and Word Finding and Formation

The functional element of my speech was delayed in both speech and language the aphasia was both receptive and expressive in nature with a high instance of anomia (word finding). The other element is oral apraxia which rendered me unable to form the words I would find leaving me disconnected and frustrated.

Receptive Aphasia, Body Agnosia & Associated Visual Agnosias

The receptive element of speech for example someone talking to me was the same external garbel as was in my mind a silent war between expresser and receiver trying to find clarity amongst the hidden mist of miscommunication.  The inability to perceive my own body meant a level of internal groundedness was  not their and context was missed time and time again. I relied on the touch, taste, smell, texture these feelings gave me a context to grab onto and create an association it is no surprise to me that my Mum through I was deaf and blind because that is exactly how I was behaving my language processing and sensory perceptual systems (visual agnosias) were so scrambled the credible and most importantly meaningful option was to “feel to think”, “feel to relate”, “feel to connect”, “feel to be”, “feel to extract” and the list goes on.

Creating My Own Language

Before interpretative language sets one could be creating their own language through association, things they have heard and seen on the television, jingles on the radio or other stands of information that bears relevance to an event and/or emotional meaningful response. In my case this was form of communication which looked meaningLESS to the listener but was meaningFUL to me as the expresser.

Memory and Internal Mentalising 

A memory with no associative images for words and no words for images meant my style of learning and integrating was not logical in nature nor literal this is secondary reason why my language and visual-verbal processing was delayed and slower, however as the years progressed I was building up a slow repertoire to words and my functional speech came around 7/8 years old this was expressively and developmentally in terms of content and formation of a 3 year old this new “voice” at times rendered me equally mute and frustrated.

Conclusion

Looking at the broader instance of different aspects that make up language processing difficulties in autism one needs to look at what is making the difficulties piece by piece, how that has an impact on the person and then work on positive and empowering and meaningful interventions.

Paul Isaacs 2017


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Autism, Walking Gait & Hemiplegia

A Dreamscapter 2016

 

Note this is from a personal perspective

As I have documented before in previous posts hemiplegia is a part of my autism profile which in my case is associated with a traumatic birth, prematurity and brain injury due to a placental abruption.

This affects the right side of my body, which caused me to have problems with the following.

  • Left-right orientation
  • Turning on one side (regardless of where the noise, auditory or tactile stimulus is coming from)
  •  Using the dominant side of body for tasks that involve both sides of the body
  •  Having an unusual/abnormal  gait which involves the right leg stiffening with a lack of bending in the knee and the leg itself rotating away from the other leg

What are the effects of hemiplegia?

It is difficult to generalise: hemiplegia affects each child differently. The most obvious result is a varying degree of weakness, stiffness (spasticity) and lack of control in the affected side of the body, rather like the effects of a stroke. In one child this may be very obvious (he or she may have little use of one hand, may limp or have poor balance); in another child it will be so slight that it only shows when attempting specific physical activities.

Copyright © 2007-2014 HemiHelp

Gait refers to the controlled manner of walking or moving on foot.  The functioning of the nervous system and the musculoskeletal system determines the gait pattern. In children who have hemiplegia, this delicate system is out of balance and often results in different types of gait.

Gait in the Child with Hemiplegia

A child with hemiplegia may have a tendency to walk with the toes on the affected foot striking the ground first, instead of the usual heel strike. This “toe drop” often results in our kids taking quite a few falls and tumbles. In order to clear the toe while walking, the child may develop a variety of ways to compensate, which then result in problems with his hip and or knee.   Treatments may include gait analysis, physical therapy, orthotics, serial casting, botulinum toxin and surgery. The goal of treatment is not to “cure” the condition, but to enable the child to achieve her maximum potential.

© 2017 CHASA. All Rights Reserved.

What has helped me?

I still have residual hemiplegia in terms of its impact on my life and it tends to start when I walk for long periods with associated movements etc. What has empowered me over the years is that same thing that would help someone who has acquired brain injury, a stroke etc which is called “brain gym”.

As an Infant & Teenager

  • Walking in long fields, day-trips and other activities (with the family and school trips)
  • Swimming in the local pools and streams (when I was younger)
  • Cycling from an early age (first with stabilisers and moved on to independent cycling) 

As an Adult

  • I continue to to walk from place to place promoting movement to the side which is impacted
  • I continue to touch type promoting both sides of my body being used
  • I continue to create art

Personality Types & Styles Of Learning

  • Being idiosyncratic and solitary meant that I was empowered by trying to do do things in my own time, my own way  and with a small amount of people so I could get direction
  • Being serious and mercurial meant that I was able to things with a level of focus and with element of free-will and boundary making and making it fun and light-hearted
  • I have a kinesthetic style of learning with a mixture of solitary and social learning

Communication 

  • Exposure Anxiety – Meant that being indirectly confrontational was the best way for me to feel included without the “watching, waiting, expecting” nature of direct contact setting or “retaliation and diversion” responses
  • Aphasia/Language Processing and Visual Perceptional Issues – Breaking down communication into smaller chunks, using gesture, tone, inflection, objects of reference, one topic at a time and one context at a time

Conclusion

Through looking at the different pieces of one’s autism (or autisms) if hemiplegia is apart of the profile it may be worth thinking of different ways to empower the person, gaining confidence and trying out new activities without fear and/or anxiety about getting things wrong but focusing on the little steps as always communication, sensory integration, sensory perceptual, associated personality types and any other issues would have to be taken into account.

 

Paul Isaacs 2017