It was 1996, a time when the rate of autism was still thought to be 1 in 10,000 people, high functioning people with autism were still thought to be rare and it was still believed that around 70% of people with autism were severely mentally retarded.   In that year my honors year that the Sociology lecturer mentioned in my first book, Nobody Nowhere, story writer, Dr Chris Eipper of La Trobe University, got involved with journalist, Kathy Gollan at ABC radio with a story.  With no qualification in child development, psychology or psychiatry (nor any medical qualification whatsoever), he was going to deliver to her people who would dispute my formal diagnosis of autism by one of Australia’s leading autism specialists, Dr Lawrie Bartak.  To back himself up, he would:

• Provide one of his Sociology honors students, Marcia Devlin (mentioned as Vanessa in my second book, Somebody Somewhere), who would claim she shared the same university class with me (she shared one one hour English class once a week),

• Provide another of his  Sociology honors students, Tony Laloutsis, who they would introduce as having been my fellow student for four years (I took 7 different Sociology units in 4 years with thousands of Sociology students in the same department, of which he was one I met only in my 4th year, not for 4 years) would claim I’d had a coffee with him.

• Provide my 4th year  Sociology tutor, Lucinda Vardey, who worked under him and  who had had me in her tutorials.

• Provide two teachers from my life before university who, due to misrepresentation would later both disappear from the transcripts.

One of these teachers was Nan Caterina, who claimed to remember me from 27 years before and wrongly believed she had been my grade prep teacher.  She disappeared from the transcripts after my real teacher called her, furious, and she realised she had never actually been my teacher.  I followed this up with the photo of my real prep grade teacher, Carolyn Reeves, but  Nan Caterina’s damage had already been done.  The other teacher was a college teacher of social psychology from Preston TAFE (again with no qualification to diagnose) who disappeared from the transcripts after she was selectively edited to appear to be saying I fitted Multiple Personality Disorder.  So far it was  a pretty thin interview.

They padded it out with selectively edited in comments from Dr Lawrie Bartak from an interview with another interviewer, Geraldine Doogue, which had been recorded back in 1991 and they made it appear that he was present and the soundbite they kept referred to me being ‘unusual among people diagnosed with autism’.  I too was edited in from the Geraldine Doogue interview and I have never met Kathy Gollan.  And whilst Gollan claimed in her ‘interview’ that no member of my family had been interviewed by Dr Bartak in his diagnosis of me, in fact this was false.  Whilst the long term substance abuse and violence issues of my family had limited any potential for him to interview my mother, he had extensively interviewed my 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).

But they needed something more, something credible.  Someone qualified.  So they got a phone link up with two well qualified American autism experts who were 10,000 miles away, Dr Kathleen Dillon and Dr Fred Volkmar.  Dr Kathleen Dillon (a Professor of Psychology at Western New England College in Massachusetts at the time, now at UC Davis University) was quoted by Kathy Gollan as.

“thinks that Donna’s symptoms owe more to the abuse she suffered as a child than to autism”.

Dr Fred Volkmar, an autism expert and the director of the Yale Child Study Center at the time was quoted as saying

” … it’s hard for me to know what to make of Donna Williams. Donna Williams’ books in my view, while very interesting, are not typical of the experience of at least the 20, 30 or 40 higher functioning autistic people that I have come to know fairly well.”

The problem was, and they never mentioned this, that these professionals had never ever met me.  Nevertheless, the selective editing of their comments was assumed as ‘proof’ and for the next 13 years their comments would appear on Wikipedia as evidence of controversy about the validity of my diagnosis.   Then, of course, it would be taken further.

Whilst I published my entire diagnostic history back to being assessed at St Elmo’s Private Hospital as psychotic at age 2 in 1965, and later assessed by Psych and Guidance teams as disturbed before being formally diagnosed with autism in my 20s, it was always the ‘testimony’ of Dr Dillon and Dr Volkmar which would be flaunted as some kind of qualification to invalidate my entire life long diagnostic history.

And there were those who would bleed this for all it was worth in hate and smear campaigns throughout internet forums and You Tube, throughout blogs and chat rooms.  Haters would contact hosts of my upcoming lectures and warn them I was a fraud.  They would post hate in the book review sections of my books on Amazon.  They would send me hate mail directly and one even attempted to post hate mail on the obituary I wrote for a valued colleague who had died that week.

Finally, I had had enough and wrote to Dr Volkmar and Dr Dillon:

Hi Dr Volkmar,

I’d like to ask how you feel about your name being used as expert opinion on my diagnosis given you had and have never met me.  Here’s where you are cited

http://en.wikipedia.org/wiki/Donna_Williams

You might also wish to read the letter in the links regarding the background to that interview and it’s entanglement with an extortion case at the time.

I look forward to you gracing me with a response.

Donna Williams.

I had no reply.  Time went on.

Then when a woman with no qualification in psychology or psychiatry began a public campaign to claim I had Borderline Personality Disorder, I addressed this as libel and defamation.  Then of one of my most virulent critics posted in support of her:

I see that you are now receiving the same threats of legal action that Ms. Williams hurled towards me. “Big Autism” (i.e. moneyed-autism and its lucrative paydays) is threatened when the “wizard” (Donna Williams) behind the curtain is revealed. Ms. Williams is a fraud and seeks to protect her racket through empty threats of legal action. If one is really autistic, they have no need to try to “prove” they are autistic.

For Ms. Williams, perhaps you should try and threaten Fred Volkmar of Yale University, the pre-eminent autism expert. Afterall, he was the first to believe and state publicly of his doubts on your diagnosis.

I can tell Ms. Williams this. Her days of performing in “black face” (the minstrel show of autism) are coming to an end. A Tsunami of criticism is on its way.

Again, I wrote to Dr Volkmar and Dr Dillon:

Hi Dr Volkmar,

As you have not replied to my question, I’m sending you a copy of the article in which I write that I am still waiting on your reply.

http://blog.donnawilliams.net/2009/05/11/when-is-a-doctor-not-a-doctor/

I’d still like to know how you feel about your name being used as expert opinion on my diagnosis given you had and have never met me.  Here’s where you are cited

http://en.wikipedia.org/wiki/Donna_Williams

Here’s some of the most recent hate postings which are still fueled by your ‘expertise’:

I see that you are now receiving the same threats of legal action that Ms. Williams hurled towards me. “Big Autism” (i.e. moneyed-autism and its lucrative paydays) is threatened when the “wizard” (Donna Williams) behind the curtain is revealed. Ms. Williams is a fraud and seeks to protect her racket through empty threats of legal action. If one is really autistic, they have no need to try to “prove” they are autistic.

For Ms. Williams, perhaps you should try and threaten Fred Volkmar of Yale University, the pre-eminent autism expert. Afterall, he was the first to believe and state publicly of his doubts on your diagnosis.

I can tell Ms. Williams this. Her days of performing in “black face” (the minstrel show of autism) are coming to an end. A Tsunami of criticism is on its way.

I look forward to you gracing me with a response this time.  Even better would be a public response regarding why you allowed your name to be used in this way.

thank you for your time.

Donna Williams.

Finally, after 13 years of pain Dr Volkmar responded, and I then asked him for a comment I could publish publicly.

My husband Chris told me it would be unlikely he’d reply.  But within 5 minutes he had.  He wrote:

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

I replied:

Thank you.

And if you ever wish to interview me I’m very happy to answer your questions.
I just wish someone had done me that honor years ago.

Warmly,

Donna *)

I am still yet to hear from Dr Dillon.

… Donna Williams.

http://www.donnawilliams.net