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 met 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 also spoke extensively 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 also met 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 has also met 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 and diabetes.  My father had literacy problems, his usual mode was hyperactive, hypomanic, flighty and exuberant.  He had times he resembled Gene Wilder as Willie Wonker and with flashing eyes he would tell you he was Elvis or Jesus, that he could cure cancer or hypnotise animals.  At other times he would become darkly crazy like Jack Nicholson in The Shining.  He was medicated with Valium and Tryptanol.  He died at 59 so I never got to ask him much about these states but I think he may have fitted dyslexia, rapid cycling bipolar and ADHD.  

On my mother's side there is OCD, Agoraphobia, addiction and alcoholism, depression (and several suicides), rage and a vast history of ulcerative colitis and cancers.  My mother lived with OCD, agoraphobia, alcoholism and mood disorder and spent many years prescribed Valium.

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, later also diagnosed with IgG2 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. Following an EEG I was also diagnosed with atypical epilepsy in my 20s (desbribed as a 'highly marked central abnormality').  I was diagnosed with a visual perceptual processing disorder at the age of 30. 

By late childhood I had developed full blown OCD and the 'mood fits' I'd had since age 3 had become more spread out, the episodes more prolonged and I fluctuated between long periods of euphoria and days, weeks, sometimes months of Selective Mutism and finally extreme withdrawal bordering Catatonia.  I was sedated with 'nerve pills'.

By age 17 I had rejected medication but spent age 17-19 seeing a child psychiatrist.  At age 26-27 I saw Educational Psychologist, Dr Bartak, and age 36-40 seeing a UK psychologist-hypnotherapist.  As a result of a collective 7 years in therapy, I gained great insights about how I worked, about my life and about others and with it came compassion and a lot more resolution and peace.  Nevertheless, at 38, and supported by my psychologist-hypnotherapist, I faced the need to resume medication for mood, anxiety and compulsive disorders.  

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 the early 90s 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.  Although Dr Dillon has never responded, Dr Volkmar did.

Dr Volkmar replied:

I am happy to say the following:

I have not personally met you and was asked only to comment on information provided to me and that my comments indicated that this was an unusual history for a person with autism.  There is a wide range of functioning among individuals on the autism spectrum and they can have unusual histories.

If this is helpful to you feel free to post it on your web site

Fred Volkmar