Donna Williams' Personal Space

Hi ! Welcome to my website. I'm Donna... So who's that?

I was born in the rock and roll years of the 1960's , in the inner city of urban Australia in the days when 'autism' was unheard of even though the condition had always existed.

I grew up in a family with more challenges than my own and spent most of my first 26 years on fairly continuous antibiotics with undiagnosed food intolerances, food allergies, blood sugar problems, nutrient deficiencies and primary immune deficiencies. In a nutshell, I was highly erratic, distracted, impulsive, often giggly and smiley, generally in a drugged state and was sick most of my early life. This meant I was meaning deaf, meaning blind, struggled to process my body messages or emotions, was unable to answer a direct question, to stay sitting in a seat, to hand in any work or acknowledge what I did or didn't understand.

In 1965, aged 2 years old, I was admitted for  a three day hospital observation at St Elmo's  Private Hospital in Brunswick, Victoria.   I was to be tested for deafness and Leukemia (I had constant infections, easy bruising, bleeding gums, my eyelashes would come out in clumps).  I also had a stomach tensing and compulsive coughing tic (Tourette's) that compelled me to the point I was coughing blood, appeared deaf, stared through everyone and everything and showed no response to pain.  My parents were told I wasn't deaf and didn't have Leukemia.  According to my father, the doctors had, instead, assessed that I was psychotic.  In 1965 the 2-5 year old children who today would be diagnosed with autism, were often instead deemed 'psychotic'. 

In the 60s parents of 'psychotic' children were generally advised to place them in a large psychiatric institutions and get on with their lives.  As a result an entire generation of autistic adults were 'hidden' until the 80s and 90s when those same institutions were being closed down and those who'd survived them were being integrated into the community.

In primary school I became labeled emotionally disturbed and was tested for deafness up to the age of 9 when my language processing disorder was finally understood (also later formally diagnosed by audiologist, Dr Leslie Tan). 

At the age of 10 a teacher named Christine who had been at a family party found me in the street after the party erupted in violence.  She took me home overnight and after returning me to my family, she apparently raised the word autism with my family,  a word which in 1973 was a very accusative thing to say to a mother.

I continued instead to be more conveniently referred to as 'disturbed' until my 20s when I was formally diagnosed with autism by Australia's leading autism expert at that time, Dr Lawrence Bartak of Monash Medical Centre.  Other diagnoses over the years including primary immune deficiencies (lack of white cells, no IgA, low IgG, D deficiency), gluten, salicylate and phenol intolerance, severe casein allergy, type 2 diabetes, a B12 deficiency and a genetic myalgic condition which results in higher levels of inflammation than most people.  I was also diagnosed with atypical epilepsy after an EEG, with visual perceptual processing disorder, mood anxiety and compulsive disorders.

Being an alienated out of control feral child taught me a lot. It taught me about assumptions, integrity, resilience, passion, adaptability, war, humility, empathy and it made me a natural anthropologist, watching from the sidelines even when I seem like a walking cartoon and a one-woman-show.

I lived in an emotional and perceptual chaos which taught me surrealism and the relativity of the word 'normal' for there are many different versions of 'normality'. I was nine before I could fluently understand with meaning three sentences in a row, was largely meaning deaf and meaning blind as well as face-blind but learned to map pattern and feel shifts and changes with remarkable ability in spite of pretty much no ability to interpret.

I had no idea why anyone did anything but I knew if someone was 'real', when a fight was coming, whether others were trying to invade 'my world'. My senses and perception were chaotic, fragmented and constantly shifting and fluctuating and the ability to understand things with meaning was so delayed I looked like I wasn't 'on line' but also like someone very behaviorally and emotionally disturbed.

I stored huge strings of sound patterns and sang and chattered to myself most of the time, often in stored lines, jingles and adverts. In other words, my condition helped me develop, instead, a highly refined capacity to sense pattern shifts, a great natural capacity for mimicry, parody and characterisations and a seemingly bottomless memory for stored strings of information even though I have the short term memory of a goldfish and very tumbled receptive information processing.

I loved life and I loved the sensory world but my world was not that of a visual thinker. As someone with fragmented vision and meaning blindness, I learn kinaesthetically; through direct physical experience and hands-on doing. I learn through the repetition of patterns, not mentally, but experientially.

I don't think in pictures. I'm a kinaesthetic thinker, a systems thinker, a musical thinker. Mine is a physical and sensory world of pattern, theme and feel. My mind is like a mosaic, my conscious thoughts intangible until I experience them after they've been expressed- usually through arts.

I am always surprised, have a great trust of unknown knowing, and have come to allow my preconscious mind to unravel and surprise me. I'm not a thinker, I'm a doer. Only through doing can I realise what my intangible thoughts may have been.

My reflection was my best friend and family and until adulthood I inhabited my body along with a number of other 'characters', a male persona who embodied logic and detachment and resembled a walking encyclopaedia, called Willie, and a female one who embodied stored characterisations and the exuberance of mania, called Carol, who both helped me survive. I associated Donna with the sensory-oriented, more feral self, the feeling self and very much a ‘cat-person’ interacting and communicating indirectly. Today there is generally more of ‘one’ relatively cohesive Donna.  And though I'm a fragmented person, a patchwork quilt, it's still one quilt.  I know all it's pieces and because I grew up being far from invisible to those who loved, who cared, abused or fiercely fought me along the way, I have strong sense of who I am, in the world, and in my own world. 

I was fascinated by my playground that was the wilderness of the streets in what was a feral childhood with all its fortune and its horror. When I was nine I was put on zinc, vitamin C and multi-vitamins and I realized meaning existed, not just pattern. At fifteen my estranged and equally feral family could no longer cope and I had to fend for myself in a world vulnerable to the wants and prejudices of strangers walking a tightrope of homelessness.

After a return to education in adulthood, I had the fortune that my health finally collapsed completely at the age of 24. It was only then that this rather 'crazy girl' I was finally diagnosed with severe digestive and immune system disorders, the beginning of over a decade of journeying into treatment. It was a year later, after intervention by medically qualified practitioners in nutritional medicine that I began to hold conscious awareness as a relatively cohesive self and could work towards guiding my own life instead of merely surviving moment to moment.

In the chaos and disorientation of that time I wrote my autobiography, Nobody Nowhere in a desperate last attempt to understand where I'd been and ask if there might be some hope beyond what I'd struggled to construct as 'life'. The book, the first of ten books I've had published, got left behind in the UK at the time and accidentally became an international bestseller, read by millions of people the world over, and the first mainstream publication of an autobiography of someone who came to be diagnosed 'autistic'. I have since moved into writing films and completely several screenplays including the screenplay to the film, Nobody Nowhere.

With the return of IgA and IgG2 immune deficiencies and autoimmune challenges, I baby-sit my health issues and manage mood, anxiety and compulsive disorders.  These things contribute to my compassion for others, my understanding of condition versus culture and ironically helps me connect with others so much more based on our individuality and personhood. I do most of that connecting through art which is a huge part of who I am. I'm wildly prolific as a writer, artist, sculptor, singer-songwriter (with Donna and TheAspinauts ) and an emerging screenwriter. In my spare time, I have, on and off, been a community volunteer, seeking to stay connected to the world around me in spite of a dance I have with social phobia.

I found a diamond of a person and he shone so bright I asked him to marry me. Chris adores me for whatever I am and however I change, when my immune system goes down the drain again, when diet gets messed up or medication is taken late and in the stability in between. He is my closest friend and a warm, humble, quiet (rather Aspie) gentleman.

Like my father, I'm a helper, hedonistic, creative and friendly, but friends take much longer.  Like my mother, I'm solitary, autonomous, I keep my own counsel and am most in company with myself.  I can feel deeply but prefer to share it indirectly, through arts.  I'm caring but prefer to to empower others and am geared for practicality, not hand holding.

For what it's worth I identify with the exuberant, idiosyncratic, vigilant, solitary and self sacrificing personality traits as my primary traits with the serious, conscientious and sensitive as my secondary ones.  I best fit the INTJ temperament, known as 'the mastermind'.

I'm wild and woolly.  I have a vibrant naughty streak am prone to euphoria as much as phobia and compulsion.  I have a Taoist's determination to strive for balance and detachment, a Sociologist's love of humanity and equality and an artist's love of connection and discovery.

I believe in being free to be oneself, in challenging ideas of ourselves in order to find out who's really there and in daring to be bold in the face of change and criticism because there is no greater reward in life than the freedom to find out who we are not and to infinitely discover ourselves in the becoming of it.

I'm a hedonist, a buzz junkie, an imp.  I live for improvisation and giggles, silliness and surrealism.  I live for freedom and warmth, belonging and being equal and part of that expresses itself through arts which are all other parts of having a voice out loud to myself before the world if it so chooses. The first bite of my own pear, though, is mine.

I'm a spiritual person but not religious. I believe we can find an essence of 'God' in all things, including  ourselves. When I have a question or need a direction, I don't assume to have the answer nor assume to have the sense to plan, but ask the question, tell the desire for change, as if to the air. In the morning, Sandman has taken care of it and progressively the answer or resolution is there.

This is my version of 'God', the unraveling of invisible string when I stay out of it and trust that unknown knowing is cleverer than conscious awareness even if I look stupid in between. I try to see past the enemy within myself and my own self righteous rigid black and white beliefs of absolutes, what's what and who's who. I believe in trying, and in staying happy and wild and seeing the world in a piece of fluff. I believe in the strength of daring humility.

I believe in stillness and love solitude.  I thrive on my own company and autonomy whether creating or 'simply being', whether in nature or just feeling space.  I believe in grace and strive for balance but don't confuse stagnation with balance.  I have no desire to choke life out of existence.  Life is for living.

I am warm and loving but prefer to love and be loved less directly.  I don't do cling and entanglement.  I am sensual and have befriended touch but I have strong boundaries and there's very few people I hug or touch.  I generally have to know someone for years and deeply connect with them to easily sit next to them or be at ease with touch.  I can give anyone information but I prefer to connect with acquaintances and strangers with a greater degree of formality or connect deeply with them through arts.  

I'm cat (albeit more a ginger one ;-) so I often prefer to watch lives, and celebrate them, from the sidelines.  If you value your autonomy, are self-owning, surreal, emotionally deep, tangibly real, quiet yet fun loving, have a deep love of artism in all its forms and know how to 'simply be', we'd have a reasonable chance of clicking.  But I'm a social claustrophobe, so I don't do entanglement but if I feel free to go I'll also feel free enough to visit.  Some of my closest friends might hear from me only a few times a year.  For me, they are alive and well in my own world and in their own lives and for me, when we meet again its always as if it were yesterday since we last met. 

Welcome to Donna-ville.

I believe in diet, and that's not easy. It's a choice between a drugged state and being part of the world. I strive to discover life after gluten free, dairy free, sugar free, additive free, low salicylate, rotation diet… and if I can discover in there new elastic definitions and incarnations of 'ice-cream', 'cake', bread', 'custard', 'icing', then there is one more day I don't feel like crying. Besides, it has helped me turn life into a good experience which compensates for a lack of shop bought pizza.

As a tertiary qualified teacher, I became a consultant in the autism field since 1996 and have worked with hundred's of people on the autistic spectrum through schools, welfare and health services as well as directly with families and adults themselves. This taught me there is no one thing called an autism spectrum condition and that for some people it is legitimately a cultural issue but for others there are so many co-morbid health issues at work it would do them a great disservice to proclaim their autism was the sum total of their selfhood or merely the culture they should learn to embrace. In the real world, all the projections and theories only ever fit to a certain degree. The rest is theory and lives in the beliefs of outsiders.

Whilst I became an international public speaker, I started out as an incredibly reluctant one. As someone who grew up with Exposure Anxiety I had no natural desire for attention, no emotional use for applause, no natural desire to be looked at and much prefered solitude and autonomy. I felt like a cat-person in what generally a dog-person world. At my first US talk (Connecticut) in the early 1990s I came out and sat and cried for the first five minutes. The audience was silent and patient and I was so moved they didn't try to control me or talk to me, they just let me be, they trusted. I honoured that respect and eventually got to my feet and read the pages I couldn't understand in this state of shutdown until the words began to have meaning. In between I looked up, cried again and continued. They taught me I could dare to be me before others no matter what. They gave me so much more than I could give. Now I just walk out and introduce myself and even challenge my audiences to question me.

However I may be criticized or praised and for whatever reason you came to see the website of this once crazy girl with more labels than a jam jar, I am proud of me just to be and you are welcome to find your being-ness here for your own sake.

... Donna Williams *