Inspiration Matters – Interview May 2018

Be yourself, don’t define yourself by your autism” – A self-assured life of an inspirational speaker, trainer and author on the autism spectrum – Paul Isaacs

“Awareness is the greatest agent for change.” – Eckhart Tolle. Paul was diagnosed with high functioning Autism at the age of 24. He has set himself apart by embarking on a noble mission of spreading awareness of Autism to enable the masses to help people with Autism live fulfilling lives. Paul has written several books about Autism including “Autism: Inside Perceptions of Communication, Interaction, Thoughts & Feelings” and “Living Through the Haze Autobiographical account of my life with Autism” which was a #1 bestseller. Paul has also been active delivering speeches to a variety of audiences such as parents, people on the Autism spectrum, social workers and at events for Autism charities and organizations like The National Autistic Society.

Thank you Paul for your time. Your interview will inspire all our community. The interview with Paul Isaacs was conducted by Inspiration Matters () in May 2018. More Info

• : You have presented speeches on various subjects related to Autism. What has been the most popular subject for your speeches and how are these speeches helping you with spreading awareness?

P: I would say that aspect of autism being a “fruit salad” by Donna Williams (Polly Samuel) which breaks autism down into “pieces” she was objective, compassionate, real and honest in her words, findings and outlook on autism and so I carry on her model which is about education, mythbusting and not being swayed by the politics and rhetoric which is found in the autism world.

• : How and when did you decide to start writing a book? Which of your book assignments was most challenging and why?

P: I was diagnosed with autism in 2010 at the age of twenty-four I was born in 1986 and went though mainstream education. My Mum thought I was deaf and blind as appeared not to “see” or “hear” however this was to do with visual perceptual disorders and being profoundly meaning deaf. I didn’t gain functional speech between the ages of 7/8 years old.

So that was a slice of my early developmental history when I wrote my first book I thought of the title and just typed in a pre-conscious state this meant that my hands on “auto-pilot” in other words I typed finished the manuscript then read it back and learned about my life. I do find writing a challenge I feel I show more of my connected self through writing than in any other medium which I would say art is a close second.

• : What has been the most important milestone in your life. What is the impact of this on your life?

P: I would say being bullied was an important milestone to come out of. In many ways I send thanks to the people who bullied me over the years as they gave me a framework of how not to treat other people. I see my self not as victim but as a victim of circumstance which is completely different I take a lot of positives from these experiences and try and mould them into something objective, bitterness is a horrible thing to hold onto and as human beings have varying lifespans I do not want to was my life living in the past.

• : What is your favorite art creation and why? What is the importance of art in your life?

P: From the age of 5 I was tampering with colours smearing them on to pages. I would say my favourite artwork was done during the passing my Gramp in 2017 it really helped me to come to terms with his passing and also the art was a way of remembrance and saying goodbye to his physical form and keeping memories of him alive.

• : What kind of changes are needed to our current education system for children with special needs? Do you see any difference in today’s school system compared to when you were a student?

P: I have made reference to the late Polly’s “Fruit Salad” and I would say using her framework would not only help people with autism but also other development disabilities, learning difficulties, mental health issues, development of identity, personality, environment and or learning styles. What ever the package mare be “autism” or not it would certainly look at the students as rounded human beings.
Of course many progressions have been made however the educational system in general is rather generic and stale in terms of how information is present to students so maybe there needs to be a massive shift in the educational system as whole.

• : What is the biggest concern for parents of children with autism? How do you think their concern can be resolved?

P: Being listened to as a human being, their worries, concerns for the future as a term of resolve although that is a big question to ask I would say it will always boil down to the people you meet and the environment you are in. So being non-judgemental would be a start and opening up an honest dialogue.

• : Who is your inspiration?

P: The late Polly Samuels she was a great inspiration to my autism work, speeches, training and overall philosophy, she was an empath, a natural comedienne and always made you think “what if” she challenged the “status quo” in so many areas in her life. I enjoyed our skype chats she made me laugh and I think that is special if people can do that.

• : What is your favorite place to visit? What do you like about that place?

P: I really like Oxford and the buildings, restaurants and gardens it has is such a beautiful setting I like the colours, the textures, the smells it is so familiar yet so new at the same time.

• : What tips/advice do you have for those in our community who want to spread awareness?

P: Be yourself, don’t define yourself by your “autism” you are more than that, do not get into the negative politics of militants in the autism world I have seen the damage that can do to people, your story and life is of equal value regardless.

• : Any special message for our community?

P: Walk on your on path, tread in its peaks and troughs, ride its waves fierce and quite, invite people to join you share their journey’s treaded also.

Paul Isaacs 2018

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Daisy King, Kabuki Syndrome and Autism

 

I first met the endearing Daisy King when I done consultancy work at The King’s home about two years ago, we have since become friends.

Daisy King is in the later years of teenage hood and is very charming, warming and loving to the people she meets. She does not have verbal speech however she shows her wants and needs through tonal modulation, directing the person, objects of reference and gesture.

She has low muscle tone (which is a feature of the syndrome) but that doesn’t stop her from wanting to get around to meet people, play with them or go for a walk with her friends and family, she has problems with feeding but has a tremendous appetite, she has her person care needs met by her family and big sister Rosie. She is loved and shows it in a give and take fashion.

Sensory Perception, Meaning Blindness (Semantic Agnosia)

I was 19 when my ex-shrink declared from across the room, ‘You have agnosia’. We’d evolved into a friendship thing and I guess in my years as her patient she didn’t have a shelf of objects in her room so had never really seen me handle them. But here I was with a rubber thingy in my fingers upon which was balances a hollow tube like structure which made a good sound when tapped. I had suddenly declared ‘this is a baby’s bottle’… probably fairly obvious to most given this woman had a toddler, but to me this mysterious structure was something of unchartered territory though it’s likely I’d encountered hundreds of them in my 19 years of life by that time, let alone grown up with one. But that’s visual agnosia for ya (semantic agnosia).

Donna Williams

Daisy seems to be meaning blind so externally explores around her liking to connect people through touch, pressure. If one doesn’t have a level of visual “recall” it would make sense that she explores people and objects in this fashion to get a “reality” other than “seeing” despite her eyes working.

Sensory Perception, Object Blindness (Simlutagnosia)

As a person who grew up with inability to simultaneously process my visual world, leaving me seeing everything bit by bit, context blind, face blind, often also semi object blind, I feel visual perceptual disorders played a significant role in my learning, development and inability to also gain receptive language processing or functional speech until late childhood. But what weight might visual perceptual disorders alone play in the development of someone’s autism?

Donna Williams

When your visual world is so distorted, lacking interpretive meaning and “fragmented” Daisy shows many clever signs of trying to get coherence from the visual world around her she will twiddle, spin and balance objects creating movement for people with an array of visual perceptual disorders objects may be “dead” when there is no movement and/or sound present. She also at times looks out the corner of her eyes using peripheral vision because it is easier to process and percieve rather than central vision which causes the distortion.

The “System of Sensing”

The realm of sensing is the place we have all come from: that world before mind was thought of as ‘me, before body became ‘mine’, that time when we ‘knew’ because we FELT the nature of things, the feel of them- when we sensed. This was before we had learned to interpret and see the world not as it was but through our concepts and ideas of what it was.

Donna Williams

When someone is in the system it often gets confused (because of the external “behaviours” and presentation) as someone who has a “low intellect” I challenge this because if the system is still present that means that the person is taking in the information around them but is “feeling” rather than putting it into other more “interpretive” framework.

Daisy seems to live very much in this system in terms of her interpersonal relationships with her family and friends. She is fun, cheeky, outgoing and shares her Mum’s idiosyncratic personality and mercurial personality.

In the end she is a human being living and loving life. 🙂

Paul Isaacs 2018

 

 

A Journey With Exposure Anxiety

Exposure Anxiety comes in 3 levels:

• Specific: Targets only specific environments, activities and interaction with particular individuals.
• Generalized and other-directed: Effects all areas of life which directly involves others.
• Generalized and both self and other directed: Effects all areas of life which directly involves others but is also present when alone.

Copyright Donna Williams 1991, 2003, 2008

 

Residual “Exposure Anxiety?

If we think about exposure in a residual (non syndromic sense) those moments of embarrassment, aware of being aware, aware of your own self-awareness of the situation meant that you froze clamed up or even ran away meant that this “feeling” you wanted to escape, remove, and disappear.

 A Personal Look at Exposure Anxiety And Me

If you turned the “volume-up” on this condition you may find that it fits in the realms of being called “Exposure Anxiety” a feeling on a chronic level that falls into the three subtypes above. I would say that in my early years I had the 3^rd one throughout my child and teenage hood as I grew into my twenties and was at the tail end of being employment in my mid teens I was thrust into a world of expectation from a social perspective that in many ways never let up. I never the less “kept going” and now at the age of thirty two I can say that the claws of this condition have shortened, nails smoothed and hands made smaller.

I would say it has an impact on me in specific areas so that is going from 80% to now at a more comfortable 30% and below I can show more of “myself”, be, share and talk in a more “connected manner” than I did even 10 years ago. Other things have changed to my environment, my purpose, life is but a rolling journey and that is the joy we can all celebrate and question at different stages in our lifetime.

My information processing being meaning deaf and meaning blind have changed, the tints have aided in those areas of visual perceptual challenges, and my meaning deafness is around 30% so I can keep a better track on conversation around me. My emotional processing and perception are still delayed that is a work in progress and I seek not to compare but to be the closest version of “me” I can be.

When we look at other people’s autism “fruit salads”, we begin to wonder what is the “driver” to what I am seeing? Is it sensory perceptual? Is it dietary disabilities? Is it seizure related? Is it emotional perception? Is it language processing? Etc. By looking at the person’s “systems” you are dealing into those areas of honest and humble questioning, what will you find and how will you adapt?

Common Threads Of Humanity?

Do people with autism have much more in common with those without? My answer is yes they do the only difference is the areas of that person’s “autism” that is challenging some to smaller more residual degrees others to more severe and/or profound degrees it is not the matter of it being a linear spectrum from “classic” autism to “asperger’s syndrome” but the also the palette of grey and what is specific to that person is what matters. All human beings have “system” it may be just that I have taken the time (which anybody could choose to do in my circumstance) and work out “what that is”.

Looking At People As People?

If one ignores the poison of the autism militancy which is political and unhelpful in its projection and reasoning one must look at the person and what “autism” is for them and means for them.

Paul Isaacs 2018

Most Common “Pieces” in People’s Autism “Fruit Salad”

Donna Williams’ (Polly Samuel) set a legacy in what the adjective “autism” meant it was like a bowl of fruit and different pieces of fruit mean different things in this overview she covered in the image above the most common aspects of someone autism “fruit salad.”

 

 

Social Emotional Agnosia – Not perceiving body language, tone of voice and facial experiences means that person only “sees” and “hears” facts that means that the person maybe socially anxious and may need information shared to them (including emotional supply) in factual/pragmatic way.

Faceblindness – A person who doesn’t recognise people by their faces this means the person may connect more with the what the person is wearing, hairstyles, jewellery, voice patterns, walking gait. context is also an issue such as meeting people and/or getting used to seeing someone one context may not translate to another. You may need to ask them is they struggle with faces.

Simultagnosia – (Object Blindness) – A person who only see’s pieces of a their visual field and not wholes this could mean that the person finds certain environments difficult to navigate, people, places, objects may be hard to track causing anxiety, overload and on the opposite end euphoria and “sensory highs” that is person who is addicted to their own “chemical highs”. Lightening, colours, patterns, colours, stairs (surface changes), shadows will all have an impact on perception.

Alexithymia – A person who does not process and/or perceive their emotions in “real-time” this can cause a reactionary delay meaning the person is always “trailing behind” to some degree and may give surface “responses” rather than “connected” responses. Give the person time to respond.

Dyspraxia & Overload – A person is struggles to motor-ordination issues, the movement of their body and limbs in and around their environment being prone to overload could be due to the brain and bodies movement not being in tandem causing/triggering chemical imbalances.

Lack of Simultaneous – Self and Other – A person who can do either “all self no other” and/or “all other no self” this means the a shared sense of “social” may be delayed and the mono-tracked way of conversing may have to be adapted to allow time between “switching”.

Language Processing Disorder – A language processing disorder can come in many forms and presentations the ability to find words (anomia), the ability to construct sentences (pragmatics) and the ability to receive and express meaning with interpretation some people may be “meaning deaf” (aphasia, verbal auditory agnosia) and need for example object of references gesture and tone and other who are literal in their perception and have atonia may need facts and to limit body language.

Communication Disorders – Some people may get tongue tied, stammer, are “tone-deaf”, have tourette’s, have verbal agnosia and talk through echolalia (TV shows, Jingles, DVDs and TV shows), some people have oral apraxia (the ability to use their tongue and facial muscles) having visual perceptual issues and associated personality types which in turn have an impact on style and/presentation.

Exposure Anxiety – A person who is triggered by direct communication and “exposure” triggering compulsive, avoidance, retaliation and diversion responses meaning that “direct communication” you may need to use a “indirectly confrontational response” such as focusing on the object, situation not the person, humanising objects.

Lack Of Mentalising – The inability to “juggle” information with a level of coherence this could be to do with information processing delays, sensory perceptual disorders, social perception and/or language processing this means that you need to work out the person’s “system” of integrating information with associated meaning.

Personality, Identity and Attachment – This is how the person sees themselves, differing personality types will colour a person’s interpersonal wants and needs and communication styles, sexuality and gender

Mental Health – These associated conditions will have an impact on presentation such as mood, impulse control, anxiety, dissociation and attachment disorders.

Physical Issues – They may have auto-immune disorders, disorders of metabolism, dietary disabilities, genetic anomalies which have an impact on overall functioning.

Paul Isaacs 2018

 

Exposure Anxiety & Autism

Exposure Anxiety was first written about in Nobody Nowhere in 1991 as a syndrome of involuntary and compulsive avoidance, diversion and retaliation responses.  A large section of my first text book, Autism; An Inside Out Approach in 1996, was dedicated to setting out strategies for managing, even reversing Exposure Anxiety.  In 2003 I wrote the first full book on Exposure Anxiety.

Published in 2003, Exposure Anxiety; The Invisible Cage of Involuntary Self Protection Responses, is the first ever text book by a person diagnosed with autism specifically focusing on co-morbid anxiety and impulse control disorders effecting those on the autistic spectrum.  It offers an innovative new approach to working with some of the most challenged people on the autistic spectrum.

Drawing on an ‘Indirectly-Confrontational’ approach, this 336 page book gives case studies and a wealth of strategies to reduce and progressively overcome the compulsive and involuntary avoidance, diversion and retaliation responses of Exposure Anxiety.   Exposure Anxiety is an ‘Invisible Cage’ that challenges the person to either side with it and identify self with their own compulsive self protection responses.

There’s is considerable overlap between Exposure Anxiety and conditions such as Pathological Demand Avoidance (first diagnosed in 2008), Oppositional Defiance Disorder (first in the literature around 2002), Avoidant Personality Disorder and Dependent Personality Disorder.  With this book actually written from an Inside-Out Approach, by someone who actually lived their entire life with and ultimately managed then overcame the condition, those looking for strategies for managing and reducing these conditions may find this book extremely useful.

Donna Williams

Motivational Differences Between Pathological Demand Avoidance Syndrome & Exposure Anxiety

As someone who has lived with chronic EA all my life this certainly different to PDA who may tolerate an audience (in a social context) I do not while with PDA is triggered by DEMANDs. I am triggered by EXPOSURE which is completely different in terms of motivations.

Exposure Anxiety, Personality Types & “Triggers” 

People with EA have a lack of sense of “self” this it true people with EA may see their condition as the very barrier to showing other’s themselves. I like my own company so naturally being solitary that isn’t a problem, also a lack of sense of self can be seen in people who are mercurial and fear loneliness (real or otherwise) those personality types I have.

If you wanted to want, wanted to be, wanted to co-exist but your EA was crippling you from doing so because of being noticed, awareness of existing etc, that would mean you were in a hidden battle a battle happening when nbeing triggered by the co-existense of other people, with the WANT and the  EA being in polar opposites and it being seen as ego dystonic.

ego-dystonic [e″go-dis-ton´ik] denoting aspects of a person’s thoughts, impulses, attitudes, and behavior that are felt to be repugnant, distressing, unacceptable, or inconsistent with the rest of the personality. See also ego-syntonic.

In EA you can have chronic, diversion, retaliation responses which in my case were running away, freezing, selevtive mutism (once functional speech came) and shutting down when people were expectant of response, expectant of a reaction and expectant of one’s own existence. Did that mean I would hurt the people I liked? Yes of course and then feared loss through these actions.

A message of hope would to understand EA its mechanics and to get the best out of the person and who they want to be.

Paul Isaacs 2018

 

Autism & Personality Types – They Do Exist

Personality Types & Autism 

When we look at “autism” looking at personality types is just as important as any other factors. We could look at these aspects of a human being they are very much the “soul” of the person they pepper one’s temperament, personal outlook, emotional regulation, friendships, relationships and aspects of social and emotional interaction.

Identity Crisis

For people who are on the autism spectrum not all their “being” is dictated by the diagnosis that they have. This of course will vary from person to person depending on what part of their “fruit salad” are impacting and how they view their personhood within that. Is it hidden by language processing disorder? Is it being tempered and challenged by health issues? Or are there underlying mental health issues that are being called “the autism” when they are not?

Autism Isn’t a “Collective” 

Some people see their autism as “ego-syntonic” that is all their person and they feel it all of the time, others like myself see their autism as part of their “being” this means that other factors come into it such as environmental factors, mental health, identity and learning style all human being are made of up these things . For me it seems to over simplified and reductive to suggest that people on the spectrum share common goals, values and outlooks as a collective experience.

The “Sameness” Machine

“We” do not all come from the same place, we do not have a carbon copy autism “fruit salad” that is  shared from person to person. That means that one should be seen as an individual not just a sausage machine of traits. People are born with no labels what so ever and no one person is defined by “one word”.

Paul Isaacs 2018

 

 

“Neurotypical”, Reverse-Bigotry & The Warped Lense Of Equality

 

Not this is from personal experiences

“Neurotypical” Is Inaccurate & Misleading? 

The word Neurotypical is used to describe people who are “non-autistic” but what if we have got that all wrong? What if the barriers are being created by the assumptions of what “autism” is that then thrusting one’s own presumptions of what it is like to be “non-autistic”?  I think that there really is no such thing.

Bigotry Is Still Bigotry 

Reverse bigotry is still that bigotry and if someone is using the words “NT” or “Neurotypical” to dehumanise, belittle or bully someone then surely that very generalised assumption if wrong? How does that become validated? Is it a sense of one’s own self importance, ego, group think and conformation bias, upbringing and/or past experiences? What gives someone the right to say these things and not take social emotional impact it has on the people in question?

“Autistic Identity”

This has worryingly been created through a “narrow” bandwidth of what autism “is” and “isn’t” but also what being “non-autistic” “is” and “isn’t”. The truth is there are far more similarities between people than not so why over invest in stereotypes? Which in the long run give people  a generic tick list of “traits”?

More Voices? More Perspectives? 

If we created so many degrees of separation do we strive to lose our objectivity? Being grounded means looking at things from the angle of non-bias. I have seen too much militancy that means that some people’s experiences have been silenced because they have not fitted the status quo that means there is rhetoric and that is unhealthy. Equality is for everybody.

No one “owns” autism it is not a thing to be bought or sold, no one should be able to cherry pick what autism “should look like” because guess what? It doesn’t have a “look” and more you give it one ironically the more voices will be lost.

Paul Isaacs 2018