Hi Nicole,

Autism Diagnosis

I was diagnosed by educational psychologist Dr Lawrie Bartak, one of Australia’s leading autism experts, from Melbourne’s Monash Medical Centre at Monash University. He has 40 years experience in the Autism field and was recently awarded Autism Victoria’s Exemplary Service Award in their 2008 Autism Recognition Awards.

He extensively interviewed the Paternal aunt who had been deeply involved with me since birth (she was the one who was going to adopt me, had fed and changed me since birth and was regularly involved with me until I was 15, so she was fairly reliable to discuss my history).

He came to speak for over an hour with my primary school teacher, Mr Frank Ryan, who by then had become Principal at the school he was teaching and managed special needs for his region.

He came to meet with Mrs Pauline Turzi (previously Pauline Cowie), the wife of my father’s best friend, Bill Cowie. Pauline had known me from age 7-13 and often saw me weekly or monthly during these years. She insisted that I “didn’t speak”. I knew I sang and did advertisements and long strings from TV shows, so contested this. She replied, “yes, you muttered to yourself but we couldn’t understand you”.

Dr Bartak also came to meet my brothers and met my mother. My father lived 3 hours from Melbourne and died before Dr Bartak could meet him.

Before publishers could publish my first book, Nobody Nowhere (which is a detailed account of my early history and childhood) I had to have ‘quit claims’ signed by all adult members of my family who were featured in that book. This required them to receive a copy of the manuscript to read and sign a waiver agreeing not to legally contest the publication. If they wished to block the book’s publication they need only have refused to sign the quit claims. Quit claims were signed by my mother, my father and my older brother, meaning that all had read and accepted my right to publish my account.

Signed written interview testimony was also gathered from my aunt about the validity of my account as well as a friend of the family who had known me since I was three years old and both were gathered by the lawyer at the time and are kept as legal records of the validity of my account.

I have been met by autism experts and leaders in the field the world over, Lorna Wing, Judith Gould, Pat Howlin, Rita Jordan, Adam Feinstein, Tony Attwood, Doug Biklen, Rosemary Crossley and could add probably another 50 to that list. ADHD, Dyslexia, bipolar, Asperger’s and autism have all been diagnosed on my father’s side of the family as does coeliac.

I was assessed as psychotic at age 2 in 1965 after a three day hospital observation at St Elmo’s Private Hospital in Brunswick, Victoria. According to my father I had been admitted to explore whether I was deaf (I had no blink response to loud noises) and whether I had leukemia (I had repeated infections and jaundice since 6 months of age) and why I had no pain response (I had had a stomach tensing and compulsive coughing tic that compelled me to the point I was coughing specks of blood). Throughout primary school I was regularly assessed by Psych and Guidance teams (school psychologists) and learned I had been formally labeled emotionally disturbed (in my school records). I was tested for deafness up until the age of 9 when my language processing disorder was finally understood (also later formally diagnosed by audiologist, Dr Leslie Tan).

In 1973, when I was 10 years old a teacher (who taught at Thornbury Primary school at the time) named Christine had been at one of my family’s 1970s parties. Fleeing the violence that erupted there by the early hours, she found me in the street. She beckoned me into the car and took me home overnight. According to my father, after returning me the next day, she had raised the word autism with my family, a word which in 1973 was a very accusative thing to say to a mother (the first popular ‘autism movie’ had come out in Australia in 1971, an Elvis film called Change of Habit in which the girl’s autism is attributed to supressed rage at her mother). In spite of this teacher’s suggestion, I continued to be more conveniently refered to as ‘disturbed’ until my 20s when I was formally diagnosed with autism.

Around age 10 (1973) I was also put onto Zinc, vitamin C and multivitamin-minerals and moved onto eating whole meals. It may be I was one of the first people with diagnosed with autism to be treated with vitamin therapy as well as antiinflammatories for juvenile rheumatism (after regularly body slamming my arms and shoulders and punching my legs) and sedatives for chronic anxiety (which I remained on to age 17). As a result of the changes implemented at age 9-11 my receptive language went from 10% to around 50%, which was enough to begin learning to understand and to use functional speech instead of just echolalia.

I was formally diagnosed with autism by Dr Bartak in 1991. I then spent 16 months seeing him regularly as a therapist and he still sees me now over 20 years later. Around the time of my diagnosis, at Dr Bartak’s request, I met with a team of his colleagues and students at the Monash Medical Centre and allowed them to extensively question me about my experiences.

In addition to being formally diagnosed with language processing disorder and autism, other diagnoses over the years including two primary immune deficiencies (no secretory IgA and a white cell 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 in my 20s, with a visual perceptual processing disorder at the age of 30, and medicated for lifelong mood, anxiety and compulsive disorders in my late 30s but I have never been diagnosed with any personality disorder.

An extensive photographic history of my development (most pics there were taken by my Paternal uncle who was a photographer) from the age of about 1 month old to the age of 14 and beyond can be viewed at any time.

Of course I’ve also had my critics. It’s important to consider their qualifications too.

A Sociology lecturer, PhD Chris Eipper, with no qualification in child development, no qualification to diagnose and whose experience of me was limited to appointments in his office as part of passing my honors degree took his views to Australian journalist, Kathy Golan at ABC. She too had no qualification with which to diagnose nor had ever met me. In her interview with Chris Eipper she featured two American psychiatrists by phone link up who were well qualified to diagnose autism, Dr Kathleen Dillon and Dr Fred Volkmar. Problem was they were 10,000 miles away, had never met me, and their views were based solely on reading my autobiography back in 1996 when it was still believed that over 70% of people with autism were severely mentally retarded.

The qualification of a professional to diagnose someone with autism or professionally question a diagnosis depends on at least three things:

* A) they are actually formally qualified in the first place (ie Doctorate in Psychiatry or Psychology),
* B) they have actually met and spent time with the person they are diagnosing and
* C) that time has been spent in a therapeutic setting and sufficient DSM based testing having been fully carried out with the individual being diagnosed.

Dr Eipper has no qualification to diagnose, the time spent in his office was hardly diagnostic and he has never been in a therapy role with me.

Dr Dillon and Dr Volkmar may both have qualifications but these amount to no qualification to diagnose me if they’ve never met me. They were being asked theoretical questions in a radio interview based only on reading a person’s account and were giving opinion about an individual they had never met.

I did email both Dr Dillon (at the US Consortium for Language Learning and Teaching) and Dr Volkmar (at Yale University) asking them on what basis they had felt professionally qualified to diagnose someone they had never met. I received no reply. Of course it would still be wonderful to receive a reply, even perhaps a public explanation for us all.

UPDATE: I have now heard from Dr Volkmar whose comments you can find here: http://blog.donnawilliams.net/2009/05/12/after-13-years-of-pain-dr-fred-volkmar-replies-to-donna-williams/

Thank you my dear.

Hi Nev,
thanks. It’s very healthy to know the world is mostly full of neither blinkered followers nor fixated zealots and that most people are in fact relatively balanced.

warmly,

Donna *)

I think that people with co-morbids and information processing challenges will often find the chronic stress of these puts up the tempo of their personality traits into disorder proportions. If they stay in those proportions for some months or years they would present as personality disordered.

People on the autism spectrum will have a range of personality traits and some will be Mercurial, putting them at risk of Borderline Personality Disorder. But they’d really have to fit the mercurial personality trait of which borderline is the disorder extreme. This is a trait in which the person is distressed by being along, lives for deeply entangled relationships with others and has a very low level of individuality. If one is the opposite and lives for autonomy, solitude and individuality, then one is likely not mercurial. Two of people’s favorite accusations re my personality have been Borderline and Schizotypal. It’s extremely obvious that I am highly solitary by nature, struggle to tolerate extended social contact, am nervous of intimacy, value my logic and emotional detachability, I struggle to see any logic in idealising anyone and am aversive to deep social entanglements, so the Borderline idea is very ignorant and one must ask why anyone would wish to project this onto someone. What’s the gain? But I can see I’ve been idiosyncratic enough to be Schizotypal at times. Einstein, in fact, is cited as an archetypal example of the idiosyncratic trait so I’m in reasonable company amidst other raving non-conformists.

I also think its problematic to think any self injurious person has borderline personality disorder. That’s like saying any person who flaps is autistic. I’d been self injurious since age 2 and that may be fairly normal in a toddler with rapid cycling bipolar, particularly perhaps if they have inherited tendencies to addiction and become hooked on their own chemistry extremes. I’d also self injured when unable to use language to make myself understood and when living with sexual abuse and exploitation in my teens.

Anyway, in the end armchair experts will continue to try and turn life into a soap opera and the more well known the names they can use the more they can raise their profile so I’m told it comes with the territory.

I definitely think keeping one’s personality in check is harder for people on the spectrum but they are often INDULGED too much too… given the EXCUSE to continue not to reign in or reality check their shitola. When I was a kid I’d be introduced as ‘that’s Donna, she’s feral’ (my father) or ‘that’s Donna, she’s disturbed’ (my mother). I was also introduced in childhood as ‘she’s psychotic’. So, when that’s your intro you have free reign to indulge your extremes. I swung the opposite (reverse psychology always defeated me because I’m a raving non-conformist) so instead I tried to ‘act normal’. But it just shows that whether the label is psychotic, disturbed or more modernly, autistic, it can be a licence to avoid responsibility for self management. I’m glad I tired of being defined by my labels. But its ironic because people fixate on me because I still have one and I guess because I defy the hopeless outcome they expect of all autistic people. I’m not tidy for them. I’d be tidier if various treatments, strategies, adaptations had all failed and I was still pissing in my room, punching myself in the face, headbutting people, throwing chairs and speaking in advertisements yet neatly tucked away in a home for the disturbed. I’m simply inconvenient.

Hi Paula,

yes, it is a harsh world out there and pretty much all we have is the law. We can only point out when people have crossed from opinion into libel and defamation and beyond that a Buddhist’s detachment and a Taoists relativism come in handy 🙂

Life’s a kind of obstacle course, other times its like a battle, or an adventure park and it all comes down to attitude, flexibility, resilience, integrity, humility and humour.

I’ve also found that shit usually sticks best to the shit throwers themselves. And I’ve found wonderful humanity in some who have been targeted by the most virulent attackers: Rosemary Crossley, Doug Biklen, Amanda Baggs.

I remember meeting Rosemary and I said forthrightly, “I like you” (very rare for me as I’m laregly neutral about most people) and she said, “no, don’t like me, my name’s mud”. I said, “I don’t care, I like you”. And pretty much, I like to be that kind of person.

If this were Nazi Germany, I wouldn’t be one who throws the second stone because others already threw the first (really its amazing how many shit throwers justify themselves this way) and I wouldn’t call to the third and thirteenth and thirtieth off in the distance to come andjoin in the stone throwing. I’d be the one who found someone I liked, German or Jew, hated or loved, and said, “I don’t care who or what you are, don’t care how many people glorify or vilify you, I will look across at you as someone I just like”.

🙂

I was diagnosed at age 2 in a 3 day inpatient hospital assessment at St Elmo’s Hospital in 1965. Unfortunately Kanner at that time described autism as infantile psychosis so my diagnosis at age 2 was ‘psychotic’. So I grew up introduced as ‘that’s Donna, she’s psychotic’ and only heard myself suggested as ‘autistic’ when I was around 10. So when I was an adult and now had functional speech I knew I wasn’t crazy enough to fit ‘psychotic’ so I searched to understand what kind of crazy I was. I came across a differentiation between psychosis and autism and remembered the word from when I was 10. I hadn’t thought the word ‘autistic’ to be relevant as I thought it was an adjective that meant ‘withdrawn’ which was no news to me so I didn’t think it could explain anything. I phoned my father and demanded to know my diagnostic history. That’s when he told me the whole shebang, how I was diagnosed psychotic at age 2, how I was suggested to be autistic when I was 10. It was in my mid 20s that that original diagnosis was confirmed, this time by Australia’s leading autism expert at that time, Dr Lawrie Bartak. But because my autobiography was published and became a bestseller, this became fuel for one of my lecturers. And the rest is conspiracy history. http://www.donnawilliams.net/diagnosis.0.html . Ironically, most of my most virulent haters identify themselves as Aspie and had my first two books not been bestsellers, Temple Grandin’s first bestseller in 1995 would perhaps never have become known either and Aspergers may never have been revisited as a valid diagnosis to make sense of these strange speaking autists.