Donna Williams’ diagnosis: Has Lawrie Bartak been misled?

A post I received from Anon suggested that I was not a medical doctor and was not trained to make a diagnosis of autism. I have never pretended to be a medical doctor or a psychologist; my biography can be found here. I hold a PhD in molecular biology, have gained experience through 12 years of research at Strasbourg, Oxford, Princeton and Edinburgh Universities, in the areas of genetic, molecular biology including virology, brain development, brain ischemia, apoptosis, and epilepsy. This was followed by a total focus on autism following my son’s diagnosis in 2001. I then trained to educate children with autism (receiving some training in ABA, VB, Son-Rise) and currently reading for a Master in Special Education/ Autism children at Birmingham University. I trained in biomedical interventions and work with several medical doctors who have knowledge of treating the medical issues seen in autism. I also trained to make autism diagnosis assessment using the ADOS (Autism Diagnosis Observation Schedule). I am principal scientist at a Trust based in Edinburgh and this gave me the opportunity to meet over 400 individuals with autism, children and adults. I have also traveled to Egypt, Turkey, Greece to meet people and families with autism. My training and personal position have given me the experience, knowledge and most of all a unique perspective on the many issues seen today in autism.

My concerns regarding the validity of Donna William’s diagnosis started when I met her in Edinburgh last year. There were many inconsistencies in her presentation that made her very unusual in her presentation. I was constantly puzzled by something I could not define clearly at the time. People with autism I have met do not have the level of expression, understanding and awareness Donna presented with. Yet, she presented with behaviours that were profoundly more autistic in nature, it felt very text-book, cliché and somehow organized. Also, I have not yet met anyone with autism with such high desire to constantly seek attention and appears so eager to be in the spot light and a subject of absolute interest. Most people with autism I have met acts much more independently of what others do or think and because of their autism, they prefer to be amongst the unknown rather than in the lime light.

I have since read the abc report of 1996, which not only included reports from Dr. Bartak’s diagnosis of Donna but also the views of others, Professor Fred Volkmar of Yale University, Dr Kathleen Dillon, Professor of Psychology at Western New England College, Geoff Lyons, a fellow student of Donna's in her final year, Chris Eipper who lectured Donna in several Sociology courses, Lucinda Aberdeen who was Donna's tutor in 1985 and Marcia Devlin, a fellow student of Donna's in 1991.

In this report which can be read in full here, I see that Dr. Bartak suggested that Donna had managed in her University studies by rote learning (as people with autism tend to do). Having heard Donna and a few adults with autism give a lecture, I can guaranty there is not a single bit of her presentation that is rote learning. Rose Blackburn, who is an adult with autism, lectures by rote learning. Her presentations are fundamentally different from that of Donna. I had the opportunity to meet her twice presenting a talk 6 month apart. I came to the second lecture because I had enjoyed the first, but most of all because I wanted to know how similar the second would be to the first one I had heard. There was not one difference I could spot. Even the jokes that appeared to be very spontaneous were placed in exactly the same way at exactly the same points of her presentation. This is what rote learning is. Donna does not seem to have even 1% of that form of learning.


We should appreciate that to do an accurate diagnosis of autism does take a lot of work and a lot of investigations, taking into account not just the current presentation of the person but also the reports of family members and others who have known the person. If I wanted today I could get a diagnosis of autism for myself, I have no doubt this could be done. I know exactly what it takes to get it, how I should act and which information I should provide. Actually, I might even try to get one, just for the fun of the exercise.

I note another interesting point in the abc report regarding what Dr Kathleen Dillon said:

“I'm not sure how exactly I would classify her. I've thought about it, I've come up with possibly ten different kinds of disorders. The one that seems that I would chuck out I think if I was meeting her and trying to get some sense of who she was, was to think that maybe she has a borderline personality disorder, which is sometimes related to abuse. She certainly has had abuse, and she may have even experienced physical trauma to the brain from the abuse, and that could be the cause of her problem.”

But most of all, what appears to me as being the most revealing information is what her fellow students reported after Donna had officially announced diagnosis of autism:

"Because the change was so dramatic. And it seemed so acted. She seemed like she was making a point all the time of everyone knowing at every moment that she was autistic."

Surely when someone presents as very social in University setting, very able intellectually and suddenly acts or present differently, there is something happening and this must be taken into account to balance the original diagnosis. This pattern of evolution of behaviours does not fit to autism.

The opinion I express here arises from the analysis made from a range of information regarding autism, how it is diagnosed, how people with autism present, how Donna presents and the reports made by others of her behaviour in University years and after her diagnosis of autism. This opinion does not stand as diagnosis and clearly Donna has a diagnosis of some kind. It stands as a form of analysis nothing else. I am entitled to express this analyis as others have in the abc report and on the Internet. My professional training and experience of autism puts me in a suitable position to present such analysis.

If Donna is truly autistic, she should so concerned about what people say about her diagnosis, how could she possibly care? People with autism tend not to focus in such obsessive way on their public image. If there is something else at stake, then she will care. And this is exactly what we see here.