Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Life with a Central Hypoventilation Syndrome


Donna Williams central apnea

Central hypoventilation means your brain keeps forgetting to keep you breathing. See, we have this thing called a ‘respiratory drive’ and this makes us keep breathing. This is why we don’t easily ‘just die’, because there are two things keep us alive; a beating heart and a respiratory drive. If either of those fail partially then we will have problems. Read the rest of this entry »

Surviving Munchausen By Proxy and Suffocation Abuse


donna aged 20 months
Suffocation abuse is perpetrated by carers with Factitious Disorder Imposed on Another (previously called Munchausen’s Syndrome By Proxy, or MSBP), 76%-98% of whom are the mothers of those they abuse. “In a survey of 51 clinics treating infant apnea, 54 of 20,090 children (0.27% or 1 in 200 of these children) had been subjected to MSBP”. Read the rest of this entry »

Falling Asleep In the Bath – with Ondine’s Curse


Donna Williams Relaxing Bath with Ondine's Curse Most people love a big relaxing candlelit bath. Put your head back under the water and give your ears a good soak. Maybe even have a snooze. Well, its not so straightforward with the hypoventilation disorder of Ondine’s Curse. Read the rest of this entry »

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ONDINE’S CURSE – a children’s social story about Central Hypoventilation/CCHS


Sleeping by Donna Williams
ONDINE’S CURSE by Donna Williams Read the rest of this entry »

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Lets Stop Calling it ‘the autism’: Autism and Trauma – what’s the connection?


donna williams Recent studies in reputable medical journals have linked Autism to seemingly farfetched things like being born to mothers with pre eclampsia, being born prematurely, being born to older fathers, being born to smokers, being born by cesarean, being circumcised under the age of 5. Read the rest of this entry »

Pandora, Avatar and vamping up my ventilation


VPAP S9 Auto Adapt

VPAP S9 Auto Adapt

I’m on ventilation due to an Acquired Central Hypoventilation Syndrome which means I can’t fall asleep without my machine… anywhere. My machine is named Pandora… after the movie Avatar as Sam Worthington uses a ventilator in that film which allows him to survive in Pandora. I decided to vamp up Pandora. Got the glitz from a craft shop. Read the rest of this entry »

Autism and Hypoventilation


donna williams aged 0.4 months old I was born in 1963 to an alcoholic mother who became sectioned under the mental health act when I was 3. I was born with Ehlers Danlos Syndrome (EDS) which is a collagen disorder thought associated with high functioning autism. Collagen plays a part in immune regulation and brain connectivity. I was immune deficient since 6 months old and had IgE allergies to wheat and legumes which would have been present since infancy. Then a lot happened when I was two and a half. Read the rest of this entry »

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Autism, musical ear syndrome and musical hallucinations in language processing disorder


Feeling music by Donna Williams We all get earworms. I do too. But this is rather different to having the equivalent of a radio program in your head. I feel I’ve had my own invisible iPod all my life because I have always had music starting up in my head, including to the degree it got in the way of learning or processing external sounds… or perhaps it filled that gap because I couldn’t. Read the rest of this entry »

Finger Agnosia, ‘Autism Fruit Salad’ and implications for Independent Typing


Donna aged 4 with feet a Since the development of iPads, many functionally non verbal people with autism have shown themselves able to express themselves independently. Others, however, have shown little interest in using an isolated finger to type or even point out icons or swipe pages on an iPad. When the same person sits stimming on their finger waggling, it is easy for some people to presume or imagine that person is to intellectually impaired they just don’t have the IQ to understand what the device is for, how to use it for themselves or why they might want to. Read the rest of this entry »

What is Autism? by Donna Williams


Donna Williams' Fruit Salad Model of Autism
If you believe that Autism is NOT a ‘Fruit Salad’ of a range of other conditions presenting ‘as the autism’, then look through this list of ‘Autism Fruit Salad’ at all the things that can be taken as ‘just parts of The Autism’. Read the rest of this entry »

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