Donna Williams' Personal Space

Hi ! Welcome to Donna-ville. No matter what state you came here in, I'm going to interrupt it for a brief interlude of therapeutic silliness for the simple reason that silliness is one of the most powerful balancers in the universe... if you can be silly, it is harder for you to take yourself too seriously, be too knocked over by critics, be turned into a sheep or get lost in our heirachical world:  

So, now, silliness aside, you may want to know some facts.  

'I' was born in the 1960's, in the inner city of urban Australia in the days when 'autism' was either deemed 'childhood psychosis' or unheard of and the incidence of autism was around 4 in 10,000 children even though the condition had always existed. Today, of course, autism is merely one of a range of autism spectrum conditions and up to 1 in 88 children are presently diagnosed on the autism spectrum.

FRUIT SALAD

We are all more than a  condition, a jumbled jigsaw, an Autism 'fruit salad'.  Nevertheless, here's some of mine.

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 (later diagnosed as 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 the 60s autism was termed 'childhood psychosis' and the 2-5 year old children who today would be diagnosed with autism, were often instead deemed 'psychotic'. 

Once a parents' child was diagnosed as ''psychotic' they 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.

Although a diagnosis of psychosis at age 2 in the 60s was essentially the same as a diagnosis of autism today, I continued instead to be more conveniently introduced as 'that's Donna she's feral' by my father and 'that's Donna she's psychotic/disturbed' by my mother so I was aware I was not usual but my condition was never discussed with me and it was in my mid 20s when my early childhood diagnosis of autism was confirmed by Australia's leading autism expert at that time, Dr Lawrence Bartak of Monash Medical Centre and I got to finally discuss my own condition with someone. 

Now, if you are a conspiracy theorist already well read on every recirculating rumor and now ready to dare read my fully detailed diagnostic history, or if you're just a researcher or parent wondering how the hell can someone like 'that' have 'ever been autistic', I have conveniently set out every detail for you all here on my diagnosis page .  Enjoy ;-).

NAVIGATION

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 seemed 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'. 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 was nine before I could fluently understand with meaning three sentences in a row.  I was, however, fluently echolalic (and echopraxic) and as such stored huge strings of sound patterns and sang and chattered to myself most of the time in stored lines, jingles and advertisements which today would have been called Logorrhea. As such I was generally discussed as 'she's just muttering away to herself'.  In the absence of meaning, my condition nevertheless 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 had the short term memory of a goldfish and dyslexically tumbled receptive information processing.  Being both meaning deaf and meaning blind, I had no idea why anyone did anything but perhaps as a compensation for these deficits, I still could sense if someone was 'real', when a fight was coming, whether others were trying to invade 'my world'.

Parts of me deeply loved life and the sensory world but unlike 65% of the general population who are primarily visual thinkers, as someone meaning blind, mine was not the world of a visual thinker.  Instead, I largely learned kinaesthetically; through direct physical and hands-on experience and patterning.

My mind was like a mosaic, my conscious thoughts intangible until I experienced them after they'd been expressed- usually through arts. I am still always surprised, have a great trust of unknown knowing, and have come to allow my preconscious mind to unravel and surprise me. I'm a systematician but otherwise I'm a doer. Only through doing can I realise what my intangible thoughts may have been.

In my visually fragmented, faceblind world, my reflection was my best friend and family and until adulthood I inhabited my body along with a number of other compartmentalised parts of me (what would, under different circumstances, have been an integrated whole). Though I'm a patchwork quilt, it's still one quilt.  I know each of the fully formed selves that comprise 'Team Donna' and have an overall strong sense of Team Donna, in the world, and in my own world I now think of as DIDville. 

My grandparents had been my custodians and lived in our shed until I was 4 and a half.  After that, I learned to navigate not only my autism but the regular domestic violence between my parents, the constant endangerment of their raucous all night parties, guns and substance abuse, and what I experienced as the personality disorder of my mother.  I was fascinated by my playground that was the wilderness of the streets.  It was a feral childhood with all its fortune and its horror. By age 3 I was taking myself to the park.  By age 8 I had found myself another house to sleep at.  I am under no illusions that none of these things caused my autism, although they challenged me to become far more capable than perhaps I might ever have been in a healthier, safer family.  I am also very aware how PTSD and DID got added to my challenges, neither of which I confuse with my autism.

As the second shortest girl in my school when I was 9, I was put on zinc, vitamin C and multivitamin-minerals.  Through this, finally eating whole meals, a range of communication related interventions and an altered approach by the environment at home and at school, I progressively came to realise that meaning existed, not just pattern and by age 11-9 developed functional speech, albeit at first stilted simple sentences and by age 12, one sided litanies.

By 13 I found myself an unofficial 'foster home' and swung between sleeping there, in a friend's shed, or walking around the streets all night.  By 15, visits to my family's home were met with such regular violence at the front door that I couldn't walk to the porch any more without my body quaking like a shell shocked war veteran.  As my family's home became too unsafe a place for me to live at all.  I came to fend for myself in a world vulnerable to the wants and prejudices of strangers.  I was used, abused, ignored, flag waved, rescued and now and then had enough glimpses of the hope for equality to be hungry for it.

I was 18 when a psychiatrist and social worker assisted me to return to education and I moved from being largely illiterate and innumerate to being a college graduate who ultimately completed a graduate degree in Linguistics, an honors degree in Sociology and a post graduate Diploma of Education as a qualified teacher.  By the end of my degree, I had the fortune that my health finally collapsed completely at the age of 24. It was only then that I had extensive intervention by medically qualified practitioners for the gut, immune and metabolic disorders and their physical, developmental, cognitive and neurological fallout that had been with me since infancy.  A year into this treatment 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 year 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'. The film rights to the book sold to a Hollywood producer and I wrote the screenplay to the film, Nobody Nowhere.

Dietary interventions are for those who need them and I happen to be among those people with autism who do.  For me, the health disorders I babysit mean a life that is gluten, dairy, legume (incl soy/peanuts), and sugar free, as well as low salicylate.  Over the last two decades I've developed elastic definitions and new inventions of 'ice-cream', 'cake', bread', 'custard', 'icing', and the benefits to what were once severe health, information processing and mood, anxiety and compulsive disorders give me a level of stability and inclusion that far compensate for any lack of shop bought pizza. I actually manage a healthy, balanced diet in spite of the restrictions, sometimes perhaps more so because of them!  I work as gracefully as I can with Primary Immune Deficiencies, Dysautonomia, Central Apnea, Salt Wasting, Ehlers-Danlos (type 4), being a survivor of breast cancer and living with PTSD, DID and Autism and its associated sensory-perceptual and info processing issues.  I try and keep my mind more on what does work than what doesn't and live the kind of life I'd have no, or at least few, regrets about.  I don't do label-lust and nor do I care for the martyrdom of being a 'sufferer'.  This is because if I'm going to have conditions I can't get rid of then I'd rather integrate their associated challenges into my daily life so I can get on with focusing on my personhood as a human being among the wide colorful diversity that is humankind. 

I express myself and connect through art which is a huge part of who I am. I'm a writer, artist, sculptor, singer-songwriter and an emerging screenwriter. But those who think these abilities were always out in the open, obvious, think again. 

Had my father not left a typewriter in my room when I was 9, I'd not have taught myself to type letter strings, then word lists, then poetry, and typing then lead my speech.  Had my mother not got a pianola when I was 14 I'd never have realised the musical intervals I played on the air from music in my head could transfer onto keys.  Had my father not left a record player and a box high with 78s in my room (first left a pop up 'toaster style' 45s record player when I was 3!) I'd not have learned to sing in a vast repertoire of voices so that eventually in adulthood I would finally sing in my own.  Had my father not left me oil paints when I was 13 I'd not have discovered I could paint, hidden the works in the roof void and only in my 20s taken painting back up again.  So you see, what we think of as talent has stranger, accidental foundations than you imagine.

In my spare time, I have, on and off, been a community volunteer (with foster children, homeless youth, the elderly, migrants and refugees, in the autism community and most recently as a tutor) seeking to stay connected to the world around me, to understand it, to find ways of feeling at home within it, in spite of a dance some parts of me have had with social phobia.

PERSONHOOD

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.  But as someone with D.I.D he married a team and all on that team have come to love and respect him as my friend, my family.  

Like my father and paternal grandmother, I'm fun loving, a helper, creative and friendly.  Like my paternal grandfather, I'm solitary, autonomous, I keep my own counsel and am most in company with myself.  It takes quite some time for me to move from friendly to friends and I prefer few, but healthy friendships with those able to keep good boundaries. 

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

I grew up with Exposure Anxiety so a lot of me is rather 'cat'.  Parts of me still prefer to watch lives, and celebrate them, from the sidelines.  I'm autonomous, self-owning, surreal yet equally logical and practical, unapologetically deep yet relatively easy going, commitedly real yet can characterise the bullshit around me, fun loving and silly yet responsible and sensible, empathic with solid boundaries.  I have a deep love of artism and nature in all its forms and appreciate and celebrate my similarities and connectedness as much as I try to walk comfortably alongside and with my differences.  I have a deep need for grace and balance in my life but as an artist am unafraid of passion.   I don't do entanglement, gush, fuss, or cling.   Most of me is geared for practicality, not hand holding.  But if I feel free to go I'll also feel free enough to visit. 

Parts of me 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.  Other parts 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 believe in being free to be oneself, in challenging ideas of ourselves in order to find out who's really there and I strive to face change and weather criticism with grace 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 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.

SPIRITUALITY

Most of me is spiritual but none of me is 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 usually 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.

As for neurodiversity, I'm comfortable with real neurodiversity... I see it in the street in every human face, every animal I encounter. I'm really happy we're all so wonderfully different and that that difference is so wonderfully ORDINARY.

AS A PROFESSIONAL

With a degree in Linguistics, a post graduate degree in Sociology and as a tertiary qualified teacher, I became a consultant in the autism field since 1996.  In time I had worked 1-1 with over a thousand people on the autistic spectrum through schools, welfare and health services as well as directly with families and adults themselves. This level of direct hands on experience in the field taught me there is no one thing called an autism spectrum condition, there are autismS.  Furthermore, all people experience bits of 'autism fruit salad' and my work as an autism consultant also brought me into consulting work assisting those not diagnosed on the autism spectrum who, nevertheless, had related challenges.

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 preferred 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.

FINALLY

However I may be criticized or praised and for whatever reason you came to this website, I am proud of me just to be and you are welcome to find your being-ness here for your own sake.

Team Donna *)