The world of diagnosis is very strange.   There are children diagnosed with autism at age 2 who by 5 appear non-autistic, I met one who appeared non-autistic until age 5 who lost all speech progressing from a stutter and by age 7 had no speech and severe co-morbids and is clearly autistic.

The recent million dollar payout to a girl with a genetic cellular disorder who developed ‘autistic tendencies’ after a series of vaccinations too overwhelming for her body to cope with, has brought the purists out in droves. But she isn’t truly autistic shouts one side, but she became autistic shouts the other. And then there’s Amanda Baggs whose situation raises the case of autistic regression in puberty and whether someone can be on a seemingly ‘high functioning’ autistic spectrum at one age and then an entirely different part of the spectrum in adulthood.

My own case rocked similar boats back in 1990 at a time when Asperger’s wasn’t yet a diagnosis, Semantic Pragmatic Disorder was virtually unheard of and 90% of those with autism were still believed to be severely mentally retarded. Today, however, the children once labeled psychotic and disturbed in the 50s and 60s are being diagnosed with ASDs, including autism and this view of tidy boxes has given way to realisation their are not poles but spectrums and that some people move along them in unexpected directions for a multitude of interconnected, often complex reasons.

I was assessed at St Elmo’s Private Hospital in 1966 aged two years old as ‘psychotic’. I was admitted because it was suspected I was deaf, had signs of immune disorder (I was tested for Leukemia) and was coughing blood (later understood to be a severe coughing tic). According to my father the basis for this term ‘psychotic’ applied to a two year old was essentially because I was found not to be deaf yet was unresponsive to speech and pain and was found to be tensing my stomach muscles and coughing compulsively against this force which was deemed self injurious.

I spent 6 months from age 4 in a private kindergarten called Gilmer College, Preston, which took both mainstream and special needs children but was removed after an Italian girl named Gracey who had CP, hit me over the head with a rock (go figure).

I was enrolled in Preston West Primary School and was taken into a group of 6 children aged 5 in a special teacher training class called The Country Infant Room which was used to teach urban teachers how to teach in country schools and had 3 age groups in the one class with around 6 children in each age group. My teacher for the three years of grade prep, 1 and 2 was Mrs. Caroline Reeves whose photo of the class features on my website. Apparently my mother was called in in my first week and told that I was unable to stay seated, didn’t respond to questions, didn’t know prayers and sang all day which disrupted the other children. Mrs. Reeves, who was the mother of a child with special needs herself, was told, rather unpolitely what would happen to her if she called my mother in for anything this stupid again. So Mrs. Reeves got stuck with me.

Grade 3 saw me with Mr Puddy who placed me, Bucky, Ralph and David Dunstan out in the cold corridor for a large part of the school year as was the discipline for uncontrollable children in 1971.

Grade 4 saw me with Ms. Separovich then transferring for six months to Bell Primary into a class headed by a Mr. Mc Donald whose discipline involved throwing things at me and standing me in the rubbish bin but at least I wasn’t cold. Back with Mrs. Separovich I had my highs and lows. Grade 4 also saw my reading teacher, Mrs. Parker manage to sit next to me long enough to discover my fluent reading was completely without comprehension and I am indebted to her for her wonderful help with meaning deafness, taking me back to picture word dictionaries and linking these with gesture through which the world of one-word-one-meaning was finally born.

Grade 5 saw me with Ms. Helen Elmer who was a lovely young woman who tried very hard to help me be an integrated human being but experienced thrown chairs, a flying cricket bat, me running at the walls, children pushed down stairs, my many mouthfulls of ink (strategy for being sent out) and much sudden bolting from the classroom.

Grade 6 saw me with Mr. Frank Ryan (Mr. Reynolds in Nobody Nowhere) who spoke with Dr. Lawrence Bartak and who I thanked from the stage before an audience of thousands at the World Autism Congress in 2002 in Melbourne. He is also the teacher who phoned Ms. Caterina Nan after she mistakenly believed she’d been my grade prep teacher grilling her as to what posessed her to make that bold and incorrect presumption and to take this further as to lie or misremember on an ABC radio interview (her section has since been edited out by the ABC).

It was the professionals from the Psych and Guidance service at Preston West Primary who saw me over my 7 years there who assessed me as ‘disturbed’ in my Primary School records.

At age 9 I was again tested for deafness and my family came to understand that I wasn’t deaf but couldn’t understand language. They then began to use slowed, simplified speech with gestures and representational objects and from here I began to come to comprehend simple sentences.

Around age 10 I was taken home by a teacher named Christine (wish I knew her last name but if you ever read this Christine, let me now thank you) who was the fiance of a car dealer friend of my fathers and worked at Thornbury Primary School in Thornbury, a suburb of Melbourne. The pair had found me in my pyjamas in the street following a family brawl during a party at my house which they’d been attending and were now fleeing (those who’ve experienced domestic violence will know this picture). After spending the night at their flat in Thornbury, the next day she found I couldn’t understand anything. Anyway, the Elvis film, Change of Habit (1969) about an autistic girl who he ‘cures’, had just come out in Australia. It was 1972 and this teacher brought me back to my parents and told them I was autistic.

In those days this was more an adjective than a diagnosis because in the 1960s and 70s those who didn’t precisely fit the stereotype of the day of autism (silent, sullen, middle class boys) were labelled psychotic or disturbed children (as was the case with me). But the word ‘autistic’ was far more insulting to mothers than the terms ‘psychotic’ or ‘disturbed’ applied to their children. The word ‘autistic’ in the 1950s, 60s and 70s meant ‘your mother had caused it’. And the Elvis film said so too.

Needless to say that whilst my father (who could barely read or write) was all ears, my mother was not. It was emotionally easier for her to introduce me as disturbed or psychotic so that visitors might understand if I head butted them, threw things, hit myself or failed to respond. My father would introduce me as ‘feral’ so people would understand why I appeared uncontrollable, impulsive or incomprehensible. And for him, feral had the hope that, just like Elvis, some people had the skill to tame such children. So for them, the word ‘autistic’ simply wasn’t as practical.

I went to 4 secondary schools from age 12-15, lasting 6 months at the first, 2 weeks at the second, 18 months at the 3rd and a few months at the fourth, finishing my education by age 15.

The third of these schools was Fitzroy High School and the co-ordinator in charge of me was Caroline Hogg MP…who was not an MP then, but she pretty much had to look after me 1-1 most days every week after I’d be banned from almost all classes and from all excursions. Unable to do much with me, she left me paper and pencil to draw and much of her time with me was in ensuring I was not wandering the community (she’d regularly have to pick me when I’d wandered to other suburbs and joined in classes at other schools), not endangering other students, property or myself. She had the patience of a saint. She offered me exemption from education at age 14. I turned it down. My final secondary school at age 15 found me largely ‘unassessible’

At age 18, with professional help I entered college, got remedial maths and English and passed year 12 by attending every class twice (once in the day, once in the evening) and from there, with professional help, went on to university.

In 1990, a year after treatment for gut, immune and metabolic disorders, I was formally diagnosed as autistic by Australia’s most well known Educational Psychologist, Dr Lawrence Bartak at Monash Medical Centre, Melbourne. He has worked with people with autism for almost 40 years at that time.

My IQ at that time was assessed as overall just under 70, putting me in the mildly mentally retarded range although I had university degrees. Within that score, other parts of testing found genius range skills apparently impossible for most non-autistic people to replicate. For example I could regurgitate patterns at a very high level but struggled to give back the meaning of a passage I had to read. My paternal aunt who had been involved with my family all my life (I was given to her at one point but they were unable to adopt me) had been interviewed about my early history and Lawrie Bartak later met another friend of my family who had known me since I was 7.

My diagnosis in 1990 was autism due to having dysfunctional language indicative of a significant language processing disorder. Though I was ‘functionally non-verbal’ I always sang and recited advertisements, TV shows and bits of people’s sentences. Though I’ve had phases of Selective Mutism, I have never been non-verbal in the silent sense though due to meaning deafness until late childhood my language was highly idiosyncratic, non interactive and largely incomprehensible for much of my childhood. I was diagnosed with a receptive language processing isorder around age 9 after further testing for deafness and reassessed with the same at age 42 when I sought further help to improve receptive language processing.

Whilst I fitted today’s far broader DSM for autism, back in 1990 this DSM was far narrower and Asperger’s was not yet a diagnosis. In 1990, I more likely fitted Semantic Pragmatic Language Disorder with Autistic Tendencies, but SPLD also didn’t exist as a diagnosis in 1990. So I was diagnosed by Dr Bartak as close as the words existed at the time. Today the DSM diagnoses as autism people who would have been highly controversial with such diagnosis in 1990. We are the untidy boxes and purists would surely prefer had we remained labeled just ‘psychotic’ or ‘disturbed’ and blame our developmental disabilities on neglect, abuse or attachment disorders whilst only ‘good families’ had ‘real autistic’ children.

An ABC interview in 1996 featured my ex-Supervisor from my honours year at University, a man with no qualifications in the autism field or child development. But having a PhD in sociology meant that to the layperson his title of Dr. could be read however the audience wished and of course his claim of ‘knowing me’ personally. Of course knowing a person personally can mean many things and in this case meant that I’d spent 10 obligatory 30 min appointments alone in his office as my thesis supervisor. Beyond that, anyone interested in my impressions of those appointments can read about him in Nobody Nowhere.

The interview also featured a student who claimed to be in my teacher’s course. She did share a one hour English class once a week with me and was on two of my teacher’s rounds with me. She is featured the book Somebody Somewhere for those who’d like to glean some insight into her desire to feature in the interview.

Others once featured in the interview have been dropped from it. One in particular, Ms. Nan Caterina, mistakenly thought she’d been my Prep grade primary school teacher (at age 5). Appalled, one of my real Primary school teachers, Mr Frank Ryan, called her and I put up a photo of my real teacher, Mrs. Caroline Reeves, (who’d had me for grades Prep, 1 and 2 in a specialised class called The Country Infants Room) on my website.

In the so called ‘controversy’ of, “was Donna Williams really autistic?”, expert opinion was sought from two US Autism specialists 10,000 miles away, Dr Fred Volkmar, and Dr Kathleen Dillon who had never met me.  Nor had the interviewer, Kathy Golan. Dr Bartak appeared to feature in the interview but in fact was also not present in the interview but was edited into it from an interview years before to give the semblance he is present in this one.

This was the quality of the ABC interview, by journalist Kathy Gollan, considered to be ‘credible investigative journalism’. Today the interview is generally seen as outdated and highly ignorant about ASD.

Donna Williams *)

http://www.donnawilliams.net