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Inspiration Matters – Interview May 2018

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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

Daisy Image 2018

 

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.

Daisy and Paul 2018

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

 

 


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Is Stereotyping & Glamorising Autism A Dangerous Path to Tread? Balance Is The Way Forward

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I think of Polly a lot and as it is coming near to a year since she has passed and autism awareness month. I think of the valuable and human lessons she taught me and other advocates who keenly listened and understood not only her perspective on the matter but her overall out look and ethos.

Paul 1995 - 1

Autistic Person? Or Person With Autism?

I think when I was born and all that was around me that I wasn’t fully aware of yet, the people, trees, the buildings, the modern world, the natural world. I think of cladding and chosen identities and when comes to defining a person by one aspect of themselves. I often wonder and worry about what that means. If we see everything as the “autism” from the moment one gets up to the moment one goes to bed what is left?

Cannot we see the other aspects the mould a person such as the environment they live in? The personality types they have? The mental health conditions? Their sense of identity? (other than being “autistic”) And their learning styles?

If we are addressing “autism” surely we should be looking at the bigger picture rather than tired and easily digested rhetoric such as “all autistic’s are logical, literal thinkers” or “all autistic’s have special interests” not taking into account the broader perspective on neurological and biological aspects, the social emotional aspects and very specific wants and needs of that person themselves and/or their families and loved ones.

An “Autistic Mind”? Or a “Human Mind? 

Last time I checked there is no such thing as a mind cannot have be clear cut as “autistic” and “non-autistic” many aspects to do with information processing can have an impact on presentation. Such as a person with social-emotional agnosia not being able to read body language, facial expression and/or tone of voice, aphasia and being able to express and/or retrieve words and apraxia with living in a body that doesn’t obey its commands of the “owner”.

Personality types in human beings regardless of autism effect the presentation of the person such as being solitary and a preference for being alone, idiosyncratic and not confirming to the cultural and social expectations and conscientious and wanting logic, linear thought and perfection to name but a few.

Balance

If we ditch the rhetoric, the cash-cows, the money makers, the politics and get to what is “real” then that is the greatest and most honest foundation of them all. True empowerment is knowing what something is and working from there not making things up to suit the make-shift package you want to “sell” to people.  I think there is nothing wrong with showing the example of just “getting on with one’s life” as the greatest one.

I am not famous, “special” or “unique” words like that scare me. It puts me on some invisible pedestal that quite rightly I don’t deserve nor want to be on. 😉

Paul Isaacs 2018


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Asperger’s Syndrome & Classic Autism? Or Left Brain, Right Brain Autism “Fruit Salads”?

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The late Polly Samuel’s (Donna Williams) through her career had pointed out that firstly autism was adjective a describer of an experience rather than a definer of a person, she also pointed out through her books and blogs that “autism” is different for each person a clustering and multifaceted condition made of different conditions in both neurology  and biology  and contributing psycho-social factors, identity, mental health and environmental factors

Asperger’s Syndrome – Left Brain Autism

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When noting and observing people with Asperger’s Syndrome the part of the brain which is being used to compensate for a disconnect right is the left, people with Asperger’s Syndrome have a condition called social emotional agnosia this means that the person cannot perceive facial expression, body language and tone of voice. Even thought sensory issues may present themselves it would to do with modulation and integration rather than sensory perceptual issues that effect different areas of the brain, faceblindness (prosopagnosia) has a high co-morbidity as well as dyspraxia, alexithymia and literal perception of language. So other words people with AS have to intellectualise in order to compensate for the disconnect in the right.

Characteristics of Right Hemisphere Syndrome: 

– Left visual neglect – an individual may neglect words on the left side of the page or not realize that there are objects on the left side 
– Difficulty with facial recognition 
– Poor awareness of deficits 
– Poor self-monitoring 
– Impulsive behavior
– Poor initiation and motivation 
– Disorientation 
– Impaired attention/memory 
– Difficulty with organization and reasoning/problem – solving 
– Difficulty with social aspects of language (e.g., poor turn taking skills, providing too much information) 
– Difficulty understanding humor 
– Difficulty with word retrieval 

© By Beata Klarowska, M.S. CCC-SLP Monday, July 25, 2011

Classic Autism – Right Brain Autism

When looking at “classic” autism one makes the impression that the person has (and wrongly) a “lower functioning” variant of AS, this could not be further from the truth people with classic  autism tend to to have receptive and expressive aphasia, verbal agnosia, speech/oral apraxia, and a higher rate of visual perceptual disorders such as simultagnosia and semantic agnosia. However introspection is in tact and just look at the poetry and art.

What if my brain injury or stroke is on the LEFT SIDE of my brain?

Injury to the left side of the brain may result in right-sided weakness and the following communication problems:

  • Receptive Language: Problems with understanding spoken or written language (listening and reading)
  • Expressive Language: Problems with expressing spoken or written language
  • Apraxia of Speech: Problems with programming and coordinating the motor movements for speaking
  • Dysarthria: Aspects of the speech system is impacted, which may result in slurred speech or a change in how your voice sounds
  • Computation: Problems with number and math skills
  • Analyzing: Problems with solving complex problems

© 2016 CONSTANT THERAPY

 

Right Brain Left Brain Autism Fruit Salads Image 2017

Differences between Aspergers and Autism ‘fruit salads’?

 In one of my books, The Jumbled Jigsaw, I presented a range of conditions commonly collectively occurring in those with autism and Aspergers. I was asked about the differences between an Aspergers (AS) ‘fruit salad’ and an Autism ‘fruit salad’As an autism consultant since 1996 and having worked with over 1000 people diagnosed on the autism spectrum there are areas that overlap, areas where similar can easily be mistaken for same, and areas that are commonly quite different. Some with AS can present far more autistically in childhood but function very successfully in adulthood. Some with Autism can have abilities and tendencies commonly found in Aspies and some will grow up to function far more successfully than they could in childhood but, nevertheless, when together with adults with Aspergers they each notice that the differences may commonly outweigh the similarities. Generally the more common differences are:

ASPERGERS
originally called ‘Autistic Psychopathy‘(now outdated)
commonly not diagnosed until mid, even late childhood.
lesser degrees of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
dyspraxia
mood, anxiety, compulsive disorders commonly onset from late childhood/teens/early adulthood as a result of bullying, secondary to social skills problems, secondary to progressive self isolation and lack of interpersonal challenge/involvement/occupation.
scotopic sensitivity/light sensitivity more than simultagnosia
most have social emotional agnosia & around 30% have faceblindness but usually not due to simultagnosia
literal but not meaning deaf
social communication impairments, sometimes selective mutism secondary to Avoidant Personality Disorder (AvPD)
sensory hypersensitivities more than sensory perceptual disorders
higher IQ scores due to less impaired visual-verbal processing
tendency toward Obsessive Compulsive Personality Disorder (OCPD), Schizoid rather than Schizotypal Personality Disorder and commonly Dependent Personality Disorder to some level.
higher tendency to AvPD rather than Exposure Anxiety
Alexithymia is common
ADHD common co-occurance but may be less marked than in those with autism.

AUTISM
Once known as Childhood Psychosis (now outdated)
generally there is always some diagnosis before age 3 (those born before 1980 were still usually diagnosed before age 3, although commonly with now outdated terms like ‘psychotic children’, ‘disturbed’, ‘mentally retarded’, ‘brain damaged’.
higher degrees and severity of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
mood, anxiety, compulsive disorders commonly observed since infancy
commonly amazing balance but commonly hypotonia
simultagnosia/meaning blindness rather than just scotopic sensitivity
verbal agnosia/meaning deafness
verbal communication impairments (aphasia, oral dyspraxia, verbal agnosia and associated echolalia and commonly secondary Selective Mutism)
lower IQ scores associated with higher severity of LD/Dyslexia/agnosias
tendency toward OCD/Tourettes, also higher rate of Schizotypal PD, DPD is common and tends to be more severe
higher tendency to Exposure Anxiety more than AvPD
higher tendency toward dissociative states (dissociation, derealisation, depersonalisation)
poetry by those with autism as opposed to AS commonly indicates those with autism can have high levels of introspection, insight
ADHD extremely common co-occurrence

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

Reflective Conclusion

It is simple people need to start looking at the functioning of the brain and how these different systems work for different people. This will in turn create advocacy which is not only meaningful and beneficial but character building and the correct information will give a broader foundation and palette to work from. I have autism (as opposed to AS) not because I am just “saying it” but because of what part of my brain effected.

What I am not saying (and never will say) is that I am speaking for all that would be disservice to many peoples realities. I am fully aware that this may challenge people me saying there are differences however looking at the neurology behind it and Polly’s observations I think there is room for healthy discussion.

Paul Isaacs 2017


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Autism, Semantic Agnosia & “The Eyes That Don’t See”

Shorts

The Eyes Are Deceptive?

Think about it a person who eye’s are organically “normal” and the ability “see” from an psychical perspective is there but the brain is not able to process visual information that is coherent and meaningful.

Sensory Explorer 2

Reality vs. Context? The Hidden Link

As a child association was created through my body this could be through objects and or people. Touch gave me a reality and context that my eyes could not the contours of what touched beamed into my inner world as a way of saying “hello” to the outside from inside and secret bridge that was being made every time.

Quinn and I

Movement, Mapping and Tactile Association

I was eager to be bare foot and “mapped” out my surroundings, movements, twists and turns around the “dead space” that enveloped in was both my enemy and my friend all at once. Touching, licking, sniffing, tapping and rubbing gave “life” to everything around me on an unconscious level of was working out world.

• This is the most studied type: easier to detect.
• Stimuli misrecognized visually, can be recognized:
– through tactile manipulation
– from verbal description
– based on its characteristic sound or noise
object
early visual processing
image viewer-dependent
object-centered (3D)
(2 and 1/2 D)
(
episodic structural description
)
structural description system
semantic system
output phonological lexicon
object naming
AGNOSIAS & SEMANTIC DEFICITS Raffaella Ida Rumiati, Cognitive Neuroscience Sector Scuola Internazionale Superiore di Studi Avanzati Trieste, Italy
A Blindism

One could call this a “blindism” a state in which visual perception is not giving the associative signals and/or visual association of what an object “is” regardless of where you find it, what angle you see and so forth. This could lead problems with context and a distortion of memory.

Conclusion

As an adult I still rely more on my movements that what I am “seeing” this means that can still get lost in my surroundings but with my tinted lenses this is able to keep my conscious mind on track with meaning.

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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Living With Anomic Aphasia In The Context of Autism

paul-amber-2002-3Note that this is from a personal perspective 

Speaking to a speech and language therapist yesterday it got me thinking about my autism trajectory and what residual and very apparent markers of disability are still present and more importantly how they manifest and present themselves.

LOOKING BACK 

As a child it took me a long to time to speak and use language in a functional way this meant that both receptive and expressive language was hard to filter and decode into something that was connecting and meaningful.

LEFT HEMISPHERE & LANGUAGE

As I have stated in previous blogs part of my development was due to brain injury to the left hemisphere this part of brain is were human language is formed (although other aspects of the brain will connect with this).

THE PRESENTATION NOW 1  – VERBAL LANGUAGE 

As an adult  the type of a aphasia  (receptive and expressive) as apart of my autism would be considered residual in presentation and it effects me with I tired my words get stuck like a “blockage” and I have to consciously “find” the words which seem almost on “there” but disappear leaving me to have longer pauses or repeat “umm” for example.

THE PRESENTATION NOW 2  – VISUAL PERCEPTUAL DISORDERS & MENTALISING

Lacking visual internalisation means that I don not have a “meta-reality” which involves complex pictural referencing in other words I do not “store visual information in a coherent way” meaning that retrieval and word association when tired can be slowed down.

Having simultagnosia means I see things in pieces that has an effect on how I internalise visual information and mentalising (organising) and need to focus on movement, pattern and touch to externally map-out something rather than internally.

Anomic aphasia (also known as dysnomia, nominal aphasia, and amnesic aphasia) is a mild, fluent type of aphasia where an individual has word retrieval failures and cannot express the words they want to say (particularly nouns and verbs).[1] Anomia is a deficit of expressive language. The most pervasive deficit in the aphasias is anomia. Some level of anomia is seen in all of the aphasias.[2] Individuals with aphasia who display anomia can often describe an object in detail and maybe even use hand gestures to demonstrate how the object is used but cannot find the appropriate word to name the object. [3]

CONCLUSION THE PRESENTATION NOW 3  – ANOMIA (WORD FINDING)

It is completely understandable that not having an visual memory and having a long developmental history of language associated issues that word finding at times for me can be difficult but one much use what they have and accept what is going on. I’m glad I am in a position to understand what is going on and I hope this blog helps others who can relate to this. 🙂

Paul Isaacs 2017