About Diagnosis

BEFORE AGE 2

I was born in 1963. I understand my mother had been a heavy drinker and smoker for several years before I was born and was still so when I was born. I understand that my mother had taken Quinine twice before I was born in two failed attempts to cause abortion. I had Colic and by six months of age had jaundice and recurrent infections.

EARLY INTERVENTION

From 6 months old (early 1964) until 2 and a half years old (early 1966) I was in a Community Welfare run program under the care of Sister Jellie. In the 60s, it was called Northcote Day Nursery, was one of only 8 Day Nurseries in Melbourne, was government funded, required a referral from a social worker and served at risk children. The children were there Monday-Friday during working hours and home weekends. Today it is a typical modern day care centre with no direct connection to Welfare services.

DIAGNOSED PSYCHOTIC AT THE AGE OF 2

In the 1960s autism was known as 'childhood psychosis'.

Around 1965, aged two and a half, I was diagnosed as psychotic after a three day hospital observation at St Elmo’s Private Hospital in Moreland, 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).

PRESCHOOLS:

Around 1966, I attended a creche at the Royal Women's Hospital in Carlton when I was around 3 years old. Perhaps because my mother had been sectioned around that time. Perhaps because it was a follow on from the diagnosis at St Elmo's.

From 3 and a half to 4 years old I was at a private kindergarten called Gilmer College in Preston which had a reputation at the time for taking children with special needs.

PRIMARY SCHOOL

I began at a mainstream inner city primary school in 1969 and after the first week was selected for a specialised class. It was called the Country Infant Room, designed to teacher city teachers to teach in small country schools. It took only 6 children my age (22 children in total) and involved having the same teacher and same classroom for 3 years.

Throughout primary school in the 70s, I was regularly assessed by Psych and Guidance teams (school psychologists) and learned I had been formally labeled emotionally disturbed (in my school records).

HEARING TESTS THROUGHOUT CHILDHOOD

With regular ear, nose, throat, lung infections I was intermittently tested for deafness up until the age of 9 when my language processing disorder was finally understood. This diagnosis was later reconfirmed in my early 40s by audiologist, Dr Leslie Tan.

WHEN AUTISM WAS FIRST MENTIONED

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.

ACQUIRING FUNCTIONAL SPEECH

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 stored phrases, TV scripts and echolalia.

WHO DIAGNOSED ME WITH AUTISM

I was diagnosed by educational psychologist Dr Lawrie Bartak in 1991. He was one of Australia’s leading autism experts, from Melbourne's Monash Medical Centre at Monash University. I spent 16 months seeing him regularly as a therapist and also met with a team of his colleagues and students at the Monash Medical Centre and allowed them to extensively question me about my experiences. Dr Bartak accumulated over 40 years experience in the Autism field and was recently awarded Autism Victoria's Exemplary Service Award in their 2008 Autism Recognition Awards.

I did not approach Dr Bartak for a diagnosis. I sought to meet others with autism, particularly those who like me had been assessed as psychotic or disturbed as toddlers in the 60s. He told me he could help me so I met with him at the Monash Medical Centre. I was surprised when his version of helping me was to do cognitive tests. My IQ was apparently under 70, in the range deemed mildly mentally retarded (yes, I already had an Hons degree and was doing a Dip Ed). However this was made up of extremely high scores on some tasks (pattern related abilities non-autistic people usually don't have), extremely low one's on others (associated with visual and verbal processing). I asked what his tests showed. He told me they showed him I was autistic. I asked how could he be sure I wasn't just crazy. He said a crazy person wouldn't produce these kind of results. In other words, my formal diagnosis was accidental.

DID HE MEET ANYONE WHO'D KNOWN ME SINCE CHILDHOOD?

Given I grew up dealing with severe abuse, in the care of an alcoholic and had left home into homelessness by my teens, Dr Bartak met with relatives other than my abuser.

He met with 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”.

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

DID MY FAMILY AGREE TO MY PUBLISHING NOBODY NOWHERE?

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.

OTHER AUTISM PROFESSIONALS WHO HAVE PERSONALLY SPENT TIME WITH ME

I have met autism experts and leaders in the field the world over. Among these have been Bernard Rimland, Lorna Wing, Judith Gould, Pat Howlin, Rita Jordan, Tony Attwood, Doug Biklen, Rosemary Crossley, Patrizia Cadei, Adam Feinstein .

The first person to have read Nobody Nowhere was Dr Sebastian Kraemer, a Consultant Child and Adolescent Psychiatrist at the London hospital I was temping at in 1990. The manuscript made no mention of autism and was originally titled "Dolly; Autobiography of a Disturbed Child". I picked him at random, wanting any child psychiatrist to finally tell me 'what kind of mad this was'. He passed it on to his mentor, Francis Tustin, a pioneering psychotherapist and author who worked with those with autism from the 1950s onwards. Francis Tustin passed the book to her publisher who sent it on to UK agent Hilary Rubinstein around 1991 from where it went on to become published as an international best seller.

IS THERE AUTISM OR RELATED 'FRUIT SALAD' IN MY FAMILY?

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 from cancer of the pancreas, liver and bowel (as did his sister) 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 (particularly bowel cancer but also a few died from lymphoma).

COMPLETE LIST OF MEDICAL, NEUROLOGICAL & PSYCHIATRIC INFORMATION

In addition to language processing disorder and autism other diagnoses over the years included

CHILDHOOD

to 6 MTHS (1963): Signs of Rickets. Had Jaundice, Colic, recurrent infections (recurrent infections and regular antibiotics continued to age 26).
2 YRS (1965): In a 3 day hospital assessment at St Elmo's Hospital, Moreland - tested for but cleared of Leukemia (had bleeding gums, losing eyelashes, easy bruising) and deafness, diagnosed instead as Psychotic (Autism was deemed Childhood Psychosis in the 60s)
2-3 YRS (1966): Contracted measles and mumps (no MMR in those days) at age 2-3. In my 30s I was diagnosed (again) with measles which returned and flare up every 6 weeks for 10 months. I'm told I had probably never rid them since childhood and that finally my immune system was beginning to try and clear the virus from my system.
3 YRS (1966): Drowned twice, once at the City Baths (rescued by two old women), once at a motel swimming pool (rescued by my then 5 year old brother).
PRIMARY SCHOOL (1969-1974): Assessed as 'Disturbed' by visiting Psych and Guidance team at Primary School (on school records).
9 YRS (1972): Tested for deafness again in late childhood. Diagnosed with Language Processing Disorder.
9 - 11 YRS (1972-74): was the second shortest girl in my school at age 9 (may have been 3ft 3" as I remember being 3ft 3" in grade 3), so was put on zinc, C, multivitamin-minerals. As a result of grew to 61 inches (5ft 1") by age 12 with associated severe bone and joint pain. Then diagnosed with 'Juvenile arthritis' and put onto pain killers/anti-inflammatories for the next 6 years.
9 - 11 YRS (1972-74): Medicated with sedatives in late childhood for chronic anxiety, sleep and behavior problems.

TEENS-ADULTHOOD:

Gut/immune/metabolic disorders

(1979) First aware of diagnosis of white cell deficiency
(1988) Diagnosed with and treated for CIN3 (Cervical intraepithelial neoplasia)
(1989) Diagnosed with Gluten, salicylate and phenol intolerance, severe casein allergy,and multiple food and chemical allergies, severe reactive hypoglycemia, severe magnesium deficiency, CFS/Fibromyalgia/ME
(2001) diagnosed with mild functional B12 deficiency
(2001) Tests revealed 5 times the high level of inflammatory cytokines (IL5), also high levels of Quinolinic Acid, both apparently indicative of 'low ATP and poor cell mediated immunity'.
(2001) Saliva swab sent off for genetic testing, revealed a marker associated with tendency toward systemic inflammatory responses and told this underpinned my immune and auto-immune disorders.
(2001) Diagnosed with IgA deficiency (0.13)
(2006, 2010) Treated for skin cancers
(Sept 2009) Diagnosed with Haemophilus (lasted 7mths), IgG2 deficiency and low blood levels of vitamin D (in spite of sunshine, vit D supplements, omega 3s and a diet rich in chicken/fish)
(Feb 2010) Overcame Haemophilus, vaccinated to all encapsulated bacteria and put on prophylactic (life long) Doxycycline 50mg
(March 2011) IgE results indicated allergies to wheat, soy, peanut (legumes). Immunologist suspects immune deficiencies have gut/allergy base. Came off all legumes (now GF, legume, sugar free). A month later able to have goat/sheep casein without allergic/gut reactions.
(June 2011) Found fast growing lump and diagnosed with breast cancer (July). Tumor was 3cm, grade 2 with start up comedocarcinoma cells. Had 1st Mastectomy (Aug), WBC normal, had adjuvant chemotherapy Sept-Nov 2011 to reduce chance of dying from secondaries from 25% to around 10%. Became severely neutropenic through chemo and treated with Neulasta. Considered to have Dysautonomia after the exacerbation of life long Autonomic Nervous System effects during chemotherapy (thought related to pre-exisiting brain injury).
(Dec 2011) A baseline, post chemo full blood analysis showed low white blood cells with mild neutropenia, low lymphocytes and low in all 4 IgGs with over all IgG deficiency and presenting a more standard CVID direction. Started Tomoxifen after these results with no significant change from the Tomoxifen. Second mastectomy due Feb 2012 due to high return rate of comedocarcinoma cells.

Neurological/sensory perceptual disorders

(1985) EEG showed atypical epilepsy (described as a 'highly marked central abnormality').
(1990) Diagnosis of autism confirmed by autism expert Dr Lawrence Bartak, Monash Medical Centre.
(1992) Diagnosed with a visual perceptual processing disorder.
(2007) Earlier diagnosis or Language Processing Disorder reconfirmed by audiologist, Leslie Tan

Psychiatric disorders

(1979) One-off appointment with a hospital psychiatrist age 16 after attempted suicide. Then voluntarily returned there as an outpatient for counseling aged 17-18 (1980).
(1996-2002) Treated for co-occurring mood, anxiety, compulsive disorders including PTSD age 36-39.
(2010) Diagnosed with the Dissociative Disorder of DID (Dissociative Identity Disorder) age 46. DID is part of a spectrum of Dissociative Disorders on the same spectrum as Post Traumatic Stress Disorder (PTSD) and can occur in any severely traumatised human being alongside any Developmental Disability or health condition they already have.
(2011) following going legume free due to IgE soy/peanut allergies, CNS issues were so reduced was able to come off Seroquel 25-50mg with no complications.

"Dissociation can be defined on a continuum. On one end try to imagine yourself driving down the highway. Suddenly you have arrived at your destination but you cannot recall how you got there. This is a form of mild dissociation and everyone does this. On the opposite end you would find dissociation defined as multiplicity which is now known as DID (Dissociative Identity Disorder). DID is not an illness nor is it a disease. The individuals that have been diagnosed with this disorder are not crazy. They are survivors of severe childhood trauma and the long-term effects have caused these individuals problems on how to process current information and react to everyday life". (from PsychCentral.com)

DID I LOOK AUTISTIC?

Not sure what 'autistic' looks like, but 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.

CONTROVERSY?

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