Paul Isaacs' Blog

Autism from the inside


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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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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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“Autism” Is Not A Single Thing – So Why Is It Still Being Presented As That?

20160730_121048DIFFERENT PRESENTATIONS 

No one “owns” Autism that includes me, you the person next door- I think it is important to know what “autism” and “asperger’s” in terms of profiles are the presentations that come with them.

POSSIBILITIES AND OPENNESS  

What are the components? (information processing, environment, mental health, personality, identity, learning types) By looking at these pieces you can understand what to do (or not to do) there are many different paths so by being open to possibilities.

GOING AGAINST THE GRAIN

I know my views aren’t popular for one because they go against the status quo of “neurodiversity” that is fine.

LOOKING BEYOND THE RHETORICS

Has anybody wondered what autism really is? Has anybody can beyond the passe rhetorics, memes or generalised views to know how to understand it? To empower  people with autism, their parents and professionals etc?

LOOKING DEEPER MEANS LOOKING AT WHAT IS THERE

Isn’t it time to know what makes up a person on the autism spectrum?  Dig deeper? I can tell you this is what my autism is made up of –

  • brain injury
  • hemiplegia
  • developmental delay
  • speech and language delay
  • language disorders
  • tic disorders
  • mutism
  • related anxiety disorders
  • personality disorders
  • learning difficulties etc.

This took six years of research and self-reflection to get to this point.

 I say to people reading this do not remember me for saying but remember the template that is being presented and what you can relate to and do not relate to

LETS THINK ABOUT IT 

For a so called “accepting autism community” I have seen plenty of internal upset, bullying, gas-lighting, trolling,  arguing, tears and upset to last a life time. Autism has created a “culture” around itself and personally I have seen nothing healthy come out of it. I came into this in 2010 with my parents we quickly got out of it my parents still don’t “get it” the militancy by people on and off the autism spectrum and I have recently been reminded of why I stay clear of it.

The people and parents who seen themselves as human beings first  (not defining by their “autism”), who are living their lives not consumed by labels and redundant definitions are the ones who are great examples.

This isn’t a game and when you are toying with people’s feelings directed at people who dare to above the parapet a speak from the heart and not tow the line Is this fair? I am all for healthy disagreement lets start listening.

Paul Isaacs 2016


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Asperger’s & The Conscientious Personality Type

All people have personality types that colour their being and “souls” for want of a better word and looking at the profile of Asperger’ Syndrome it certainly has been very interesting breaking down this profile can be put into these domains.

 These are the basics of the “profile” which can be separated into 5 different domains social perception, sensory integration, language processing, emotional perception and motor coordination.

Now let’s have a look at the conscientious personality type

  •  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
  1. Hard work. The Conscientious person is dedicated to work, works very hard, and is capable of intense, single-minded effort.
  2. The right thing. To be Conscientious is to be a person of conscience. These are men and women of strong moral principles and values. Opinions and beliefs on any subject are rarely held lightly. Conscientious individuals want to do the right thing.
  3. The right way. Everything must be done “right,” and the Conscientious person has a clear understanding of what that means, from the correct way to balance the checkbook, to the best strategy to achieve the boss’s objectives, to how to fit every single dirty dish into the dishwasher.
  4. Perfectionism. The Conscientious person likes all tasks and projects to be complete to the final detail, without even minor flaws.
  5. Perseverance. They stick to their convictions and opinions. Opposition only serves to strengthen their dogged determination.
  6. Order and detail. Conscientious people like the appearance of orderliness and tidiness. They are good organizers, catalogers, and list makers. No detail is too small for Conscientious consideration.
  7. Prudence. Thrifty, careful, and cautious in all areas of their lives, Conscientious individuals do not give in to reckless abandon or wild excess.
  8. Accumulation. A “pack rat,” the Conscientious person saves and collects things, reluctant to discard anything that has, formerly had, or someday may have value for him or her.

What I would like to do with this is myth-bust to some degree what is the “Asperger’s” and what is simply a personality type that rides along with the overall profile the profile is split into 5 domains the other aspects are simply a personality type and I wonder if sometimes the two get confused as the same thing.

Idiosyncrasies, production and use of speech, conversation and are going to be a part of the mix and seeing the person as more than their disability is something a firmly advocate.

Paul Isaacs 2016


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Autism Interview #8: Paul Isaacs on Personhood and “Autistic Identity”

Jenna GensicMany Thanks to Jenna Gensic for conducting this interview with me and others – please checkout Jenna’s page Learn From Autistics -Connecting Parents and Caregivers with Autistic Voices

Paul Isaacs is an autism advocate, trainer, and public speaker from England. He says that public speaking about his experiences and the experiences of others has helped him find his voice and develop a true skill. He always emphasizes the positive aspects of how life can be lived with autism. He uses the acronym PEC to describe the qualities people who work with autism should have: Positivity, Empathy, and Compassion. He is also a published author and blogs at Autism from the Inside.
In your most recent blog post, you discussed your dislike of the tendency to attribute someone’s neurology to their entire identity or personhood. However, there are many other autistic self-advocates who insist that this premise is important for improving the treatment of people with disabilities. What advice do you have for parents who are trying to help empower their children with the skills and confidence to be successful and are receiving conflicting information from autistic self-advocates in this area?

I would say that being born a human being first should be seen. Every person on this planet is a human being regardless of ability, disability, race and gender. Understanding the “autism” is very person specific, environmentally specific and situational specific – these different “pieces” which make up the autism have their own unique presentation, and also the way in which the person is affected will differ not only due to the “pieces” and their trajectory, but what the “pieces” are in the first place. It is like being a detective, searching out what works and what doesn’t are both equally important.

With regards to my identity, I see myself as a person and a part of humanity, so therefore I am a person first – personally, my autism affects my visual and auditory perception, language processing, cognitive processing, learning difficulties, etc, but these are PART of me, not the totality of my BEING .

I have personality traits (which everybody has regardless of autism or not) which make me happy, silly, draw, sketch, meet up with people, etc. These are human things which I value. I am not ashamed of my autism, but I don’t glamourise it either. I keep a balanced, open-mind. I can only speak for myself (how autism affects me). No one can speak for ALL, so, in that sense, people can learn from different perspectives and realities.

You were diagnosed at a relatively late age even though you exhibited clear signs of autism when you were young. What do you think was the main reason for this delay? Have you seen evidence of this still occurring today or has autism awareness reached new heights such that this sort of situation will likely never happen again?
I was born in 1986 and although there were specialist autism bases around my area, my autism wasn’t picked up due to circumstantial insistences. I was seen by an educational psychologist in 1993 and was seen by a child and adolescent mental health team in 1996 and an adult mental health services in 2007 and 2008 before I was formally diagnosed in 2010.
I would say it was not anybody’s fault as no information was given to my parents during my time in mainstream education. When I was in secondary school (I gained functional speech between the ages of 7/8), there where several meetings with my head, as well as the latter years of primary school. However, there was an autism base at the secondary school, and I would speak with the students and even attend lunchtime meetings and eat with them.
My Mum though I was solely brain damaged due to the placental abruption and lack of oxygen when I was born and that was the only name she had for my “behaviours,” but she had no doubt that I was a person before any of these difficulties.
What are you asked to speak about most often?

Sensory perceptional and language processing seems to be the one I get asked to do; however, on my booking page I have slowly built up other areas and topics.

What mistakes do autism advocates make?

Getting over-invested in the autism “politics” this where “identity” can become in crisis, and mental health can breakdown. I am talking through observations and also experiencing it myself – Donna Williams an advocate, speaker, consultant and author on the spectrum gave me some sage advice, and that is to take a step back, regain healthy boundaries, find yourself and do socially binding things.

Autism politics can get rather unhealthy to be a part of, there can be militancy by people on an off the autism spectrum that can be rather distressing and uncomfortable to be a part of. My personal opinion is that everybody has a story and that their realities are just as valid as anyone else’s – there should not be a single representation, but a more egalitarian outlook where all person hoods and realities are taken into account. It is my opinion that autism isn’t culture, but a “culture” has been created around autism.

Describe some of the factors that have contributed to the personal and professional success you have achieved today.

My parents have helped me a lot over the years on both a personal and professional level – it started with boundaries, right and wrong, having a moral compass, seeing “failure” as normal and therefore accepted, seeing me as “Paul” first, a boy, a teenager, an adult, and letting me experience the outside world and all that it entails.

What are some of the strengths and challenges you’ve experienced as a result of being on the spectrum?

I still have problems with language processing, visual perception (faces, objects, people), visual distortions (foreground, background), under-processing on my right side (motor and visual), sensory integration, movement, processing “self” and “other” – being mono-tracked and seeing the significance of what is being said and what is happening (life skills have helped so much in this area) and learning difficulties.

I don’t know if my strengths are autie-specific. I do enjoy writing poetry, creating abstract artwork, and writing books. I like creating things, watching movies, and I also like alternate fashion.

What advice do you have for parents of autistic children who respect the knowledge and experience of autistic self-advocates and are looking for guidance in helping their children develop their potentials?

Go with the child on their journey. It will be different for each person – see them as your child first, understand the pieces of their “autism,” and work from there. Let the child experience life.

Jenna Gensic & Paul Isaacs 2015