Polly's pages (aka 'Donna Williams')

Ever the arty Autie

Autism and diagnosis: When is a doctor not a doctor?


donna williams aged 2 Sometimes there are things which would be funny if they weren’t so annoying.  One of those is where the use of the title “Dr” is taken to mean the person is qualified as a medical doctor, as a psychologist or psychiatrist.  In fact “Dr” simply means they have a ‘doctorate‘, a PhD, a piece of paper showing they have achieved the highest level of education in a given field.  But that could be a doctorate, a PhD in Philosophy, Sociology, Engineering, even in Biology and they’d have no more expertise to diagnose language, psychiatric, information processing, developmental or personality disorders, than a well read garbo. donna williams aged 4 A PhD in biology may allow you to use the title ‘Dr’ but such a person will not have the qualification or expertise to be a medical doctor.  But to the person in the street, they struggle to differentiate these details and some PhDs fraudulently allow the public to presume they have expertise in areas they have none.

donna williams aged 4 But even a qualified expert in a given field is not qualified to diagnose any person unless they’ve actually met them, entered into a therapy relationship with them and implemented formal testing according to the DSM criteria they are testing for.

Case in point:

  1. Nicole Trenton wrote:If you truly are autistic than all you have to do is get a comprehensive autism evaluation done by a team of autism specialists. I’m sure you can find one where you live. Also, your parents/family will have to be interviewed as well as this is a requirement of a true autism evaluation.We just don’t understand why, since you claim that you really do have autism, you won’t do this. If you really do have autism the evaluation will easily tell us. Why can’t anyone speak to your family about your developmental history, your early years?If you are telling the truth than this should be no problem, right?
  1. On May 8th, 2009 at 11:16 pm e donna Says:Hi Nicole,

    donna williams aged 4 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.

    donna williams aged 4 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).

    donna williams aged 5 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.

    donna williams aged 5 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”.

    Donna Wiliams aged 6 running in a circle with a stickDr 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.

    donna williams aged 3 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.

    donna williams aged 4 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).

    donna williams aged 7 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.

    donna williams aged 10 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.

    donna williams aged 13 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 had never been diagnosed with any personality disorder (in 2010 I was diagnosed with Dissociative Identity 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 Gollan at ABC.  She too had no qualification with which to diagnose nor had ever met me.

    With no qualifications nor clinical experience with which to do so, and no personal involvement with me outside of having once been my honors year thesis supervisor, Chris Eipper was presenting himself as a researcher to put forward his claim that they had all been duped, that I could never have been autistic and was therefore some kind of seriously mentally ill or disturbed person. To back himself up, he had spent a year gathering acquaintances who believed they had known me.

    These included Nan Caterina, who mistakenly thought she’d been my grade prep teacher in primary school until shown my school photo with my real teacher for my first three years. There was Marcia Devlin, a student during my Dip Ed in 1992 who had, along with around 80 students, had shared a 1 hr English class with me, once a week for 6 months and who I had already written about in Somebody Somewhere as the rather notorious ‘Vanessa’.

    There was Tony Latousis a fellow honours year student among around 30 others and with whom I’d once had a coffee who claimed he had known me for four years but essentially was only a fellow student within an entire Sociology student population during the same years I was, as was Geoff Lyons and neither of whom I remember, that’s how well they knew me.

    There was my sociology tutor during my honours year who I had no association with outside of tutorials.

    Kathy Gollan 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 did finally receive a reply from Dr Fred Volkmar which you can read here.