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Autism from the inside


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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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Meeting Up With The King’s

 

This week I had the pleasure of meeting up with the King’s they are family that live in the north of England in the Wakefield. Sharon and Richard have three children on the autism spectrum Rosie who is diagnosed with Asperger’s Syndrome, Lenny with Classic autism and Daisy with Kabuki Syndrome and Classic autism.

Staying with the family was very interesting and reflective on my part, as all the family showed deep love and care for each other being honest about the difficulties and  balanced about them showing deep care and empowerment for each other.

Their kindness and humility was reflected in the hospitality shown to me and the others we met on our travels to the park during my visit it is sometimes the little things that matter as much as the big ones. I look forward to meeting them again.

Paul Isaacs  2016