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 Marcia Devlin, a student during my Dip Ed in 1992, now a professor in the Department of Education and columnist for The Age. Along with around 80 students, she had shared a 1 hr English class with me, once a week for 6 months. But before Marcia Devlin was interviewed about me, before she volunteered herself to join her Sociology lecturer, Chris Eipper on the now notorious ABC interview, someone had already written about HER two years before. That someone was me.

Just as I had already written about Chris Eipper in Nobody Nowhere in 1991 (5 years before the ABC interview), I had already written about Marcia Devlin in my second autobiography, Somebody Somewhere in 1994 (2 years before the ABC interview) as ‘Vanessa’. And neither of them ever talked about THAT.

Marcia Devlin’s testimonial in the ABC interview presented me as highly invested in and desperate to be identified as autistic, essentially presenting me as someone seriously emotionally disturbed or personality disordered who preferred to think of myself as autistic.

In the interview, in 1996, this is how Marcia Devlin presented me, and herself to the ABC interveiwer, Kathy Gollan:

Kathy Gollan: What did you think when she told you she was autistic?

Marcia Devlin: I thought it was sad, because I thought ‘Here’s a very emotionally disturbed young woman who is looking for something.’ She was sort of pleased when she told me, she told me in confidence, that she – she said you know, ‘Please don’t tell anyone I’ve got this secret and this thing that you musn’t tell anyone’ and made me promise and then said, ‘I’m autistic.’ I thought it was sad because I thought ‘I don’t think you are autistic but I think you’re trying to make sense of the experiences you have and that’s something that you’ve latched on to.’

And a little while later, a couple of other people who I met up with from the Dip.Ed. would laughing and joking with me say ‘Do you know Donna’s secret yet?’ And I said, ‘I don’t know what you mean.’ And they said, ‘Oh, she’s autistic. She’s going round telling everyone secretly that she’s autistic.’

Kathy Gollan: Why were you and your fellow students so cynical about the fact that she was regressing into this autism?

Marcia Devlin: 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. And it appeared to me, and to other people I spoke to, that when she needed to understand something for her benefit, like she needed to understand what was needed for an assignment, she switched out of this “autism”, understood what she needed to know and then went back into it again. So where we were doing something that didn’t matter, like we did you know Phys.Ed. we did square dancing, what’s that? barndancing or whatever it’s called, you know, she was ‘Oh don’t touch me, don’t touch me!’ and carrying on the whole time because it wasn’t important. But when we were sitting down discussing what was required for an assignment, there was none of that sort of behaviour. It was completely obvious that it was contrived. And then when people found out that this book had been accepted for publication, everyone said, ‘Ah ha, that’s why she’s doing it.’

So perhaps its time to explore for a change, what was Marcia Devlin like before this interview in 1996 and what drove her to want to support her own Sociology lecturer, Chris Eipper, in attacking my reputation?

Here’s what I wrote of Marcia Devlin in Somebody Somewhere, published TWO YEARS BEFORE THE ABC INTERVIEW where I protected her identity with the name ‘Vanessa’. I also disguised the fact she had approached me about her fiance by referring to him instead as her ‘friend’:

I liked Vanessa. She was a student in the course with me. I liked her hair and I liked her eyes. I reminded Vanessa of someone she knew. ‘Do you know anything about dyslexia, Donna?’ she asked me. ‘Some,’ I said.
Vanessa had a friend who had reading difficulties but she had always felt it was more than this. Her friend had shared the same strange ways and had failed to pick up the subtleties. Vanessa wondered what it was that we shared in common.
‘Does dyslexia also involve having trouble being with people?’ she had asked me. ‘What sort of difficulties?’ I asked. ‘He doesn’t seem to notice people’s feelings. He talks over everyone or he talks really loudly about anything in front of anyone. I end up feeling embarrassed by him sometimes and when I explain it to him he really tries to understand but then he does it again,’ she explained. ‘When I met him, I thought his funny ways were really cute. I thought he was just naive and that he’d learn all these things, but now we’ve been together three years and I think either he can’t change or he doesn’t want to bother.’

Vanessa was close to a person with some difficulties like mine. I could, therefore, risk telling her why I was like I was. I told her about autism. When I saw Vanessa was placed with me for the first teaching round, I was relieved. There would be someone here who would understand me. I spoke freely and openly with her.

We were both teaching at the same school and it was the day our supervisor would come to assess our ability to teach. One hour before my assessor came to watch me, Vanessa asked me to come with her to the room she was teaching in. She handed me a letter. I walked away to read it. The letter explained that I was making her very, very uncomfortable. It said that she had been dropping hints but I hadn’t seemed to get them. The note said that I was selfish because I only talked about myself and never asked her about herself except to say, how are you? The note said not to talk to her in front of people anymore and not to discuss the note with anyone except her. I was not to do so face to face. I was to do so only by phoning her outside of school hours to discuss it.

Vanessa never realized that to say, How are you? from my own feelings was a big thing. She never realized that none of the things that had upset her were intentional. I burned up with shock and shame and hurt. I stood in the bathroom and splashed myself with cold water. I was about to vomit when the assembly bell rang. My next class was going to be assessed by the lecturer who I had already been informed I couldn’t tell about the letter.

I wanted to run, to cry, or be sick. Betrayed by a ‘the worlder’ I had trusted with my self, I had nothing left within me to drive me to fight back. The lesson was assessed as very good but I was told I had been hyper and manic. ‘You won’t be able to keep up this pace as a teacher,’ warned the lecturer.

My experience with Marcia Devlin (‘Vanessa’) were so disturbing to me they significantly impacted on my ability to complete remaining teaching rounds or trust socialising with other teachers on my rounds. I wrote, further in Somebody Somewhere of my social anxiety in the staff room of the following teaching round:

These faces attempted to make conversation and it was like how it feels when the dentist tries to make conversation before taking your teeth out in a room that reeks of what is about to happen. I answered each of them, feeling ill and needing a toilet break and mental space. Their smiles merged with the memory of Vanessa’s and became a category in my mind that signaled danger.

Marcia Devlin had her own demons. Perhaps, a fiance she feared was autistic but didn’t yet have the word for it (The work of Hans Asperger was first translated into the English language in 1996). When I named the similarity as autism it may well have had personal repercussions for her as it would have reflected on the partner she was intending to marry. Marcia Devlin would probably have read about herself in Somebody Somewhere in 1994, two years before the ABC interview and has never drawn public attention to what I’d written about her. Perhaps because she went on to a high level job in the Education Department (she presently holds the inaugural Chair of Higher Education Research at Deakin University).

But I have had the legacy of Marcia Devlin’s testimony for the past 16 years. It’s time people got to know her as she was two years before the ABC interview, to see how SHE initiated inquiry into my condition and why, how she converted that for her own emotional agenda and to lay to rest discomfort about the similarities that nagged her between me and the fiance she intended to, and went on to marry.

Marcia Devlin’s contribution to staining my reputation since 1996 has gone unquestioned and publicly touted ever since on my Wikipedia page. Nevertheless, the other side of Marcia Devlin’s testimonial will have it’s home here including the classism of her final comment in the 1996 ABC interview which she thinly disguises as her own comparative empathy:

Marcia Devlin: I used to be a youth worker, and she reminded me of kids I used to work with in youth refuges, who’d had absolutely horrific lives, and who had had to sort of block out the rest of the world in order to survive and just concentrate on themselves. She was very much like that, like it was very obvious to me when I met her that she hadn’t had a happy upbringing. I mean I had no evidence of that, it was just an intuition. She wasn’t empathetic about other people because she spent so much time thinking about herself.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Thanking Marcia Devlin for the Higher Education

I never had any doubts about Anne McDonald’s ability to communicate simple needs or her apt, often wicked one liners. It was her sounds and movements, yes, those of someone with severe cerebral palsy, that spoke in unison with her assisted letter board pointing. And Anne was such a strong personality her hand movements were far from passive. Determined, vigilant, yet humorous, Anne would often near slam the letter board and even if she overshot the mark, it was still usually clear what letter she was heading for. And whilst she had a full range of involuntary movements and noises, it didn’t change the fact that after years of having dinners with her each month one came to know Anne’s passive expression and her active expression and particularly the grimace complete with eye squeezing she could do on cue to confirm or negate someone else’s interpretation of her thoughts, feelings, requests.

Sure, pointing out the letters to spell Kahlua is one thing, but when you saw this cheeky beast make enough racket to get the letter board back to ask for her second and her third, then grimace on cue when asked to confirm her choice, well, it was clear Anne McDonald was in no way Rosemary’s ‘baby’, she was very much her own person, and one I’d bet wouldn’t have minded the run of the drinks cupboard if she’d had any mobility or dexterity with which to do so.

One could doubt Anne’s deeper writings if one was so inclined to do so. Why not? They’d have taken forever to type letter by letter with someone with her level of severe CP. But I met enough of Anne’s carers who conveyed their experiences of facilitating her typing on her blog, to know that Rosemary was not the only person Anne typed deep, rich, political statements with. And if I had any such doubts, not that I ever had reason to doubt the full humanity and intelligence of my friend, Anne McDonald, well the events of one night in particular, would have challenged any critic.

We were sitting at the table, me, my husband Chris Samuel, and Kieran, who had only recently met Anne. The verbal conversation went on around Anne, who was one of the 6 people seated at the table. Kieran was trying to find a word he couldn’t remember and defining it, something like “you know, when the government makes rules, set in law”. And Anne burst out with what for all the world sounded like a drunk saying ‘legislation’. We all heard it but none of us could believe our ears. We had never once heard a single intelligible spoken word out of Anne’s mouth. And of all the words, she’d just spouted a four syllable one, completely apt for the context. I said, ‘no way, Anne could not actually have said legislation’. And then Anne did her grimace with the eye squeezing, the same way she’d confirm, yes, she wanted more Kahlua (or icecream, or a range of highly desired things she’d confirm request of).

Rosemary chimed in, ‘it does happen now and then, the occasional comprehensible spoken word’ and explained that often its the long complicated words that somehow are more common. So did Anne strike me as the kind of mind and personality that might be driven to write political essays? Sure, if any one of her many carers would support her through the tedious process of typing letter by letter, days on end to achieve what would take others a few hours.

So what was I to make of the tabloid efforts of journalist, and hopeful novelist, Cheryl Critchley, seizing the opportunity of Anne’s death in Oct 2010, to launch her own literary career on the broken back of Anne McDonald’s reputation? Or that of Critchley’s champion and protege, crime writer, Andrew Rule who recently wrote the article Rosemary’s Baby? Were they right that Rosemary Crossley was an imperfect, flawed human being, capable at times of being a zealot, of false modesty? Yes? No? Three bags full? Who the hell cares? Is Critchley or Rule a perfect person? Their writing strikes me as akin to the common muck of today’s trolls and cyberstalkers that drive teenagers to suicide. If that’s the measuring stick, I’ll take my chances with Rosemary!

But I still take offence at my friend being referred to as anyone’s baby. In her one liner communications during those dinners, it was clear Anne communicated feelings about family which were akin to those with attachment issues. Even in pointing her way through three word responses to me, I was aware that Anne was unnerved by having been dumped at age 3 in an institution, one I had no doubt she’d she detested and felt both demeaned and traumatised by. I remember once when I suggested Rosemary was like a mother to her, that Anne herself had, through pointing on the letter board, cast off any presumption or suggestion anyone, including Rosemary, was her mother. Sure, Rosemary and Chris were family to her, but neither saw the other as in a parent-child relationship. It always seemed obvious to me, that Anne, like many abandoned children, was her own mother.

Anne’s mother is now 70, perhaps thinking about her own legacy, her own glory, and how she’ll be remembered. And that may not taste very nice. Not if Anne was an achiever who convinced a Federal Court Judge in a typing test that her communication was her own.

Anne McDonald (11 January 1961 – 22 October 2010) was an Australian author and an activist for the rights of people with communication disability.

McDonald was born on 11 January 1961 in Seymour, Victoria, a small Australian town. As a result of a birth injury she developed severe athetoid cerebral palsy. She was diagnosed as having severe intellectual disability and at the age of three was placed by her parents in St. Nicholas Hospital, Melbourne, a Health Commission (government) institution for people classified with severe disability, and lived there without education or therapy for eleven years. During her time in the hospital she was neglected and starved and at age 16 she weighed only 12 kilograms. Despite her ill-treatment, McDonald considered herself “a lucky one”, who escaped through a stroke of good fortune. By her own reckoning, 163 of her friends died in the institution while she was there.[1]

In 1977, when McDonald was 16, Rosemary Crossley was able to establish communication with her through a method known as facilitated communication training. Once McDonald was able to make her wishes known she sought her discharge from St. Nicholas. Her parents and the hospital authorities denied her request on the grounds that the reality of her communication had not been established. In 1979, when McDonald turned eighteen, she commenced a habeas corpus action in the Supreme Court of Victoria against the Health Commission in order to win the right to leave the institution.[2][3] The court accepted that Anne McDonald’s communication was her own and allowed her to leave the hospital and live with Rosemary Crossley. More Supreme Court proceedings and further tests were required to win the right to manage her own financial affairs.[4][5](from Wikipedia)

Not if, like so many non-verbal adults with autism who came to type independently, Anne taught herself to read through watching Sesame Street for years in the institution where the television was often their only company. Not if as an adult, Anne convinced a university that her essays were her own enough to, like many with CP, gain a university degree or was awarded for her achievements.

After leaving the institution McDonald got her Higher School Certificate (University entrance) qualification at night school and went on to take a humanities degree at Deakin University, completed in 1993. She has written a number of articles and papers on disability, has spoken at a number of conferences, and has been active in the disability rights movement, with special emphasis on the right to communicate[6][7][8].

On the night of the 3rd December 2008 McDonald received the Personal Achievement Award in the Australian 2008 National Disability Awards at the Australian Federal Parliament House as part of that years International Day of Persons with Disabilities.

Not if, in 2010, not long before her death from heart attack at the age of 50, Anne wrote her a letter to her mother letting her know she wished to cease all contact on the basis it hurt too much to have a mother who, in spite of all she’d achieved, could never believe in her communication.

And what evidence did Anne’s mother put forward as ‘proof’ Anne’s communication was not her own? She claimed she had, on a visit, whispered to Anne rude remarks about the person Anne most trusted and relied on, Rosemary Crossley. Was it a test to see if Anne was a mindless sycophant? A test to see if Anne would do her mother’s competitive narcissistic dirty work and pass on an emotional dig her mother was too passive aggressive to say to Rosemary directly? How many of us, dumped by that parent, would then take the venom they’d made us carry and pass it on to the intended recipient? And if we didn’t, does that make us retarded? Or too emotionally intelligent to participate in what we perceive as passive-aggressive trash behaviour?

The remaining evidence cited by Andrew Rule? Apparently, after the age of 18, Anne had typed she missed her rabbit 15 years ago when placed in the institution at age 3. And Anne’s brother, apparently impressive policeman, Ewan McDonald, and his now 70 year old mother say, shock… drum roll…. that Anne never had a pet or toy rabbit!!! OMG! So if after 15 years Anne, who had been non-verbal at the time and unable to check the identity of a toy, misremembered a teddy as a rabbit this is suddenly evidence we must tear down everything a Federal Judge and University held to – that Anne McDonald was her own person, a person capable of making intelligible choices and expressing these through pointing on a letter board whilst supported.

Anne expressed she was nobody’s ‘baby’. Maybe the myth, the fairytale, the inability to face reality, might be that of a 70 year old woman who never had her moment of glory. But that 70 year old may well have been Anne’s own embittered mother and her comments just happen to sell a juicy tabloid story in an era where cyberstalking and troll behaviours are deemed normal enough to pass for journalism – especially if it might also conveniently launch Critchley’s book.

A number of key factors in Cyberstalking have been identified:

* False accusations. Many cyberstalkers try to damage the reputation of their victim and turn other people against them. They post false information about them on websites. They may set up their own websites, blogs or user pages for this purpose. They post allegations about the victim to newsgroups, chat rooms or other sites that allow public contributions, such as Wikipedia or Amazon.com.[5]
* Attempts to gather information about the victim. Cyberstalkers may approach their victim’s friends, family and work colleagues to obtain personal information. They may advertise for information on the Internet, or hire a private detective.
* Encouraging others to harass the victim. Many cyberstalkers try to involve third parties in the harassment. They may claim the victim has harmed the stalker or his/her family in some way, or may post the victim’s name and telephone number in order to encourage others to join the pursuit.
* False victimization. The cyberstalker will claim that the victim is harassing him/her.
* Arranging to meet. Young people face a particularly high risk of having cyberstalkers try to set up meetings between them.[7] (from Wikipedia)

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

The Tale of Rosemary’s Baby, Part Four – why Anne McDonald was nobody’s ‘baby’

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 Marcia Devlin, a student during my Dip Ed in 1992, now a professor in the Department of Education and columnist for The Age. Along with around 80 students, she had shared a 1 hr English class with me, once a week for 6 months. But before Marcia Devlin was interviewed about me, before she volunteered herself to join her Sociology lecturer, Chris Eipper on the now notorious ABC interview, someone had already written about HER two years before. That someone was me.

Just as I had already written about Chris Eipper in Nobody Nowhere in 1991 (5 years before the ABC interview), I had already written about Marcia Devlin in my second autobiography, Somebody Somewhere in 1994 (2 years before the ABC interview) as ‘Vanessa’. And neither of them ever talked about THAT.

Marcia Devlin’s testimonial in the ABC interview presented me as highly invested in and desperate to be identified as autistic, essentially presenting me as someone seriously emotionally disturbed or personality disordered who preferred to think of myself as autistic.

In the interview, in 1996, this is how Marcia Devlin presented me, and herself to the ABC interveiwer, Kathy Gollan:

Kathy Gollan: What did you think when she told you she was autistic?

Marcia Devlin: I thought it was sad, because I thought ‘Here’s a very emotionally disturbed young woman who is looking for something.’ She was sort of pleased when she told me, she told me in confidence, that she – she said you know, ‘Please don’t tell anyone I’ve got this secret and this thing that you musn’t tell anyone’ and made me promise and then said, ‘I’m autistic.’ I thought it was sad because I thought ‘I don’t think you are autistic but I think you’re trying to make sense of the experiences you have and that’s something that you’ve latched on to.’

And a little while later, a couple of other people who I met up with from the Dip.Ed. would laughing and joking with me say ‘Do you know Donna’s secret yet?’ And I said, ‘I don’t know what you mean.’ And they said, ‘Oh, she’s autistic. She’s going round telling everyone secretly that she’s autistic.’

Kathy Gollan: Why were you and your fellow students so cynical about the fact that she was regressing into this autism?

Marcia Devlin: 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. And it appeared to me, and to other people I spoke to, that when she needed to understand something for her benefit, like she needed to understand what was needed for an assignment, she switched out of this “autism”, understood what she needed to know and then went back into it again. So where we were doing something that didn’t matter, like we did you know Phys.Ed. we did square dancing, what’s that? barndancing or whatever it’s called, you know, she was ‘Oh don’t touch me, don’t touch me!’ and carrying on the whole time because it wasn’t important. But when we were sitting down discussing what was required for an assignment, there was none of that sort of behaviour. It was completely obvious that it was contrived. And then when people found out that this book had been accepted for publication, everyone said, ‘Ah ha, that’s why she’s doing it.’

So perhaps its time to explore for a change, what was Marcia Devlin like before this interview in 1996 and what drove her to want to support her own Sociology lecturer, Chris Eipper, in attacking my reputation?

Here’s what I wrote of Marcia Devlin in Somebody Somewhere, published TWO YEARS BEFORE THE ABC INTERVIEW where I protected her identity with the name ‘Vanessa’. I also disguised the fact she had approached me about her fiance by referring to him instead as her ‘friend’:

I liked Vanessa. She was a student in the course with me. I liked her hair and I liked her eyes. I reminded Vanessa of someone she knew. ‘Do you know anything about dyslexia, Donna?’ she asked me. ‘Some,’ I said.
Vanessa had a friend who had reading difficulties but she had always felt it was more than this. Her friend had shared the same strange ways and had failed to pick up the subtleties. Vanessa wondered what it was that we shared in common.
‘Does dyslexia also involve having trouble being with people?’ she had asked me. ‘What sort of difficulties?’ I asked. ‘He doesn’t seem to notice people’s feelings. He talks over everyone or he talks really loudly about anything in front of anyone. I end up feeling embarrassed by him sometimes and when I explain it to him he really tries to understand but then he does it again,’ she explained. ‘When I met him, I thought his funny ways were really cute. I thought he was just naive and that he’d learn all these things, but now we’ve been together three years and I think either he can’t change or he doesn’t want to bother.’

Vanessa was close to a person with some difficulties like mine. I could, therefore, risk telling her why I was like I was. I told her about autism. When I saw Vanessa was placed with me for the first teaching round, I was relieved. There would be someone here who would understand me. I spoke freely and openly with her.

We were both teaching at the same school and it was the day our supervisor would come to assess our ability to teach. One hour before my assessor came to watch me, Vanessa asked me to come with her to the room she was teaching in. She handed me a letter. I walked away to read it. The letter explained that I was making her very, very uncomfortable. It said that she had been dropping hints but I hadn’t seemed to get them. The note said that I was selfish because I only talked about myself and never asked her about herself except to say, how are you? The note said not to talk to her in front of people anymore and not to discuss the note with anyone except her. I was not to do so face to face. I was to do so only by phoning her outside of school hours to discuss it.

Vanessa never realized that to say, How are you? from my own feelings was a big thing. She never realized that none of the things that had upset her were intentional. I burned up with shock and shame and hurt. I stood in the bathroom and splashed myself with cold water. I was about to vomit when the assembly bell rang. My next class was going to be assessed by the lecturer who I had already been informed I couldn’t tell about the letter.

I wanted to run, to cry, or be sick. Betrayed by a ‘the worlder’ I had trusted with my self, I had nothing left within me to drive me to fight back. The lesson was assessed as very good but I was told I had been hyper and manic. ‘You won’t be able to keep up this pace as a teacher,’ warned the lecturer.

My experience with Marcia Devlin (‘Vanessa’) were so disturbing to me they significantly impacted on my ability to complete remaining teaching rounds or trust socialising with other teachers on my rounds. I wrote, further in Somebody Somewhere of my social anxiety in the staff room of the following teaching round:

These faces attempted to make conversation and it was like how it feels when the dentist tries to make conversation before taking your teeth out in a room that reeks of what is about to happen. I answered each of them, feeling ill and needing a toilet break and mental space. Their smiles merged with the memory of Vanessa’s and became a category in my mind that signaled danger.

Marcia Devlin had her own demons. Perhaps, a fiance she feared was autistic but didn’t yet have the word for it (The work of Hans Asperger was first translated into the English language in 1996). When I named the similarity as autism it may well have had personal repercussions for her as it would have reflected on the partner she was intending to marry. Marcia Devlin would probably have read about herself in Somebody Somewhere in 1994, two years before the ABC interview and has never drawn public attention to what I’d written about her. Perhaps because she went on to a high level job in the Education Department (she presently holds the inaugural Chair of Higher Education Research at Deakin University).

But I have had the legacy of Marcia Devlin’s testimony for the past 16 years. It’s time people got to know her as she was two years before the ABC interview, to see how SHE initiated inquiry into my condition and why, how she converted that for her own emotional agenda and to lay to rest discomfort about the similarities that nagged her between me and the fiance she intended to, and went on to marry.

Marcia Devlin’s contribution to staining my reputation since 1996 has gone unquestioned and publicly touted ever since on my Wikipedia page. Nevertheless, the other side of Marcia Devlin’s testimonial will have it’s home here including the classism of her final comment in the 1996 ABC interview which she thinly disguises as her own comparative empathy:

Marcia Devlin: I used to be a youth worker, and she reminded me of kids I used to work with in youth refuges, who’d had absolutely horrific lives, and who had had to sort of block out the rest of the world in order to survive and just concentrate on themselves. She was very much like that, like it was very obvious to me when I met her that she hadn’t had a happy upbringing. I mean I had no evidence of that, it was just an intuition. She wasn’t empathetic about other people because she spent so much time thinking about herself.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Autism: A special report by Kathy Gollan – exploring Marcia Devlin

Hi Donna,

Thank you for giving me the opportunity to reply.
Not having ever met you in 1996, I was giving my opinion to questions posed to me in a radio interview based on what I had read by and about you at that time. I did not presume to have been able to provide you with a diagnosis.
Much has changed in the field of autism from 1996 to 2012. Although it remains the same that I have never met you and can only offer you, as before, my opinion. In my judgment today, your presentation then and now is much more consistent with those who currently identify themselves as on the autism spectrum. From your autobiographical information, you appear to have had a very complicated history of unfortunate events happen to you regardless of how anyone chooses to label you and yet you have managed to have many accomplishments. For that you are to be commended. I wish you only the best in the future.

Sincerely,

Kathleen Dillon

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Autism; A special report by Kathy Gollan – now send in the clowns

When Chinese whisper takes off, igniting into a media circus and fueling future hate groups for the following decade, it’s easy for people to have little or no idea who actually started the ball rolling. So here’s the history of that controversy

It was started by a Sociology Professor, Chris Eipper, who was supervisor for a year during my honours year thesis. PhD Chris Eipper, is not a doctor or psychologist, had no qualification in child development, no qualification to diagnose me nor any other child or adult with any condition whatsoever.

I had met Chris Eipper the year before my thesis, in 1985 when I was 23 years old and one of around 250 third year sociology students packed into the lecture theatre for two subjects he lectured on, each of them a semester. So he knew me as well as any of that ocean of 250 faces, though the tutors for these subjects were a range of graduate students. It was because he spoke in a monotone, wore a duffle coat and touted himself as from a working class background with leftist egalitarian views that the following year I decided to choose him to supervise my honours year thesis. I needed someone whose voice I could follow and someone without intonation was ideal and coming from a background of abuse then social disadvantage, I felt this was someone who probably would not exploit me.
In 1986, aged 24, I did an honours thesis and was obliged to spend ten 30 minute appointments in his office 1-1. If I failed to do this, I would fail my honours year. If I swapped supervisors, I was told I would risk failing my honours year. When Nobody Nowhere was published at the end of 1991, I determined to get a copy to everyone mentioned in it. Chris Eipper featured in it for 1-2 pages, so would be sent a copy. I wrote in Nobody Nowhere:

“My supervisor… was also sarcastic and at times cunning in trying to combat my evasiveness. He was, I believe, both surprised and amused by the way in which his sarcasm went over my head. Though I was clever in other ways, the subtlety of prompts and jibes was beyond my grasp. He eventually realized this and asked me in no uncertain terms why I was so evasive. He had called me an enigma. I had gone home and looked it up in the dictionary.”

When my first book, Nobody Nowhere, became a major international bestseller, my Australian publisher, Doubleday received a submission from Chris Eipper for his fiction novel he was hoping to get a publisher for. His submission was rejected. I then received a letter from him via my UK publisher (I was now living in the UK) informing me that he was involving himself as a researcher in my case. I also received copies of letters he sent to each of my publishers and to the multitude of journalists who had interviewed me. I also heard from Autism Victoria that he had contacted them to try and discuss my diagnosis with them.
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. There was my psychology teacher from when I did year 12 over a decade earlier in 1982.

Today, had this been online, it could have qualified as cyberstalking.

On Wikipedia, Cyberstalking is identified as involving:

False accusations. Many cyberstalkers try to damage the reputation of their victim and turn other people against them. They post false information about them on websites. They may set up their own websites, blogs or user pages for this purpose. They post allegations about the victim to newsgroups, chat rooms or other sites that allow public contributions, such as Wikipedia or Amazon.com.[5]
Attempts to gather information about the victim. Cyberstalkers may approach their victim’s friends, family and work colleagues to obtain personal information. They may advertise for information on the Internet, or hire a private detective. They often will monitor the victim’s online activities and attempt to trace their IP address in an effort to gather more information about their victims. [6]
Encouraging others to harass the victim. Many cyberstalkers try to involve third parties in the harassment. They may claim the victim has harmed the stalker or his/her family in some way, or may post the victim’s name and telephone number in order to encourage others to join the pursuit.
False victimization. The cyberstalker will claim that the victim is harassing him/her.

As my second book, Somebody Somewhere also became an international bestseller, his interest in me continued. I continued to hear from media journalists who he had approached and who now wanted me to answer. On the publication of my third book, Like Colour To The Blind, he took his views to Australian journalist, Kathy Gollan at ABC. She too was a journalist who had no qualification with which to diagnose me nor anyone else and had ever met me. In her interview with Chris Eipper she brought in 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 and had never met me. Their views were based solely on reading my autobiography in the early 90s when it was believed that over 70% of people with autism were severely mentally retarded. The qualification to diagnose someone with autism or professionally challenge 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.

Chris Eipper had 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.

By May 2009, I had sustained over a decade of the the general public recirculating and rehashing that ABC interview as ‘proof I was never autistic’ and the wide range of associated hate mail, hate pages, even the constant sabotage of my reputation on Amazon and Wikipedia, I did email both Dr Dillon (Western New England University) and Dr Volkmar (at Yale University) asking them on what basis they had felt professionally qualified to diagnose someone they had never met.

Dr Volkmar responded immediately.

I am happy to say the following:

Fred Volkmar

But still, critics watered down his response and continued to invest in the fact Dr Dillon had never responded, never taken back her apparent professional rubber stamping that I was a fraud. Finally, three years later in May 2012, Dr Dillon did respond:

Not having ever met you in 1996, I was giving my opinion to questions posed to me in a radio interview based on what I had read by and about you at that time. I did not presume to have been able to provide you with a diagnosis. Much has changed in the field of autism from 1996 to 2012. Although it remains the same that I have never met you and can only offer you, as before, my opinion. In my judgment today, your presentation then and now is much more consistent with those who currently identify themselves as on the autism spectrum.

Sincerely, Kathleen Dillon

TAKING ‘SHIT’ AND MAKING ‘SCULPTURES‘

As a Taoist, I find the positives in otherwise negative experiences. Had Chris Eipper not started his campaign, I would probably not have continued to write books after my third one. Instead I have ten published books including 4 text books used in training in special education and psychology courses around the world. Without the hatred, mistrust and controversy he fueled, I would perhaps not have put all my energies into the consulting work I did since 1996, having now worked with over 1000 families of children on the autism spectrum in countries around the world. Without the attacks on my character, I would probably not have worked so hard to focus on what use I could be to the world. Without the media interest he flamed into existance, we would not be able to look back at how archaic we were and how far we’ve come in terms of awareness about autism, the now laughable presumptions and stereotypes that surround it. Without a new computer generation inspired to carry forward a Chinese whisper they have no idea of the origin of, I’d probably not have continued to have so many readers now over two decades since my first book came out. Without curiosity seekers still looking up ‘Donna Williams controversy’, I would never have disclosed so much personal diagnostic detail and complete pictorial history which has benefited the autism world as one of the most complete online diagnostic and pictorial histories of any well known person diagnosed with autism. For these things, I thank my critics, for the ‘shit’, and for the ‘sculptures’ I made from it.

MY COMPLETE DIAGNOSTIC HISTORY:

BEFORE AGE 2

I was born in 1963. My paternal grandparents, who lived with us until I was 4, were my primary carers. My paternal grandmother was the child of a first cousin marriage. Her own two grandfathers were brothers and her two grandmothers were mother and daughter. So I was a product of inbreeding with the talents and challenges that perhaps come with that.

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 Rickets, 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.

THE WORD ‘AUTISM’

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. Though I’d already been diagnosed as psychotic at the age of two, the actual word ‘autism’ was not used then because autism was merely ‘childhood psychosis at that time. By the time people were now rewording childhood psychosis as ‘autism’ by 1973, saying ‘your child is autistic’ 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 (1969) in which the girl’s autism is attributed to supressed rage at her mother (psychoanalytic perspective still common in some parts of Europe today). In spite of this teacher’s suggestion, I continued to be more conveniently referred to as ‘disturbed’ until my 20s when my original diagnosis as ‘psychotic’ at age 2 was now reconfirmed but with the more modern term of ‘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.

COGNITIVE TESTING AT AGE 26

In 1965, my diagnosis at age two of ‘psychotic’ came about through three days observation in a hospital. There was probably no cognitive testing at that time. The diagnosis would likely have been purely observational. In 1991, now in my 20s, I had enough skills to participate in formal testing which ascertained my strengths and deficits and whether these indicated the kind of information processing patterns seen in people with autism. This was done by educational psychologist Dr Lawrie Bartak, one of Australia’s leading autism experts, from Melbourne’s Monash Medical Centre at Monash University. He also spoke with and met with those who had had significant involvement with me as a child. 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. With 40 years experience in the Autism field, Dr Bartak 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, most of whom were institutionalised in those days. 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, this professional reconfirmation of my autism was accidental.

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

Dr Bartak 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”.

I grew up dealing with severe abuse at the hands of a personality disordered alcoholic who may have had some elements of AS. As such, I had left home into homelessness by my teens and had obvious Post Traumatic Stress Disorder in addition to my autism related challenges, Because there were others he could interview about my childhood development, learning and behaviour, Dr Bartak had no reason to meet with my abuser. My father, who had not abused me, lived 3 hours from Melbourne and died before Dr Bartak could meet him. Dr Bartak did later meet my brothers.

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 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 a strikingly high cancer rate (particularly bowel cancer and lymphoma).

COMPLETE LIST OF MEDICAL 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 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). A month later able to have goat/sheep casein without allergic/gut reactions for the first time in 20 years. My diet became free of legumes, sugar, gluten, cow’s milk free and is low salicylate.
(June 2011) Diagnosed with breast cancer and underwent double mastectomy and chemotherapy. During chemotherapy I became severely neutropenic (0.00 neutrophils and put onto Neulasta) and deficient in all 4 IgG subclasses. I also encountered troubling complications (urinary retention, gastroparesis, tachycardia, hypo and hyper thermia, trouble swallowing, hypoventilation, syncope, blurred vision) that the oncologist and GP felt were due to Dysautonomia (thought related to pre-existing brain injury being aggravated by the chemotherapy).
(Jan 2012) MRI following severe sciatica and associated temporary partial paralysis showed several abnormalities thought possibly associated with D deficiency in childhood and associated immune/autoimmune disorders. Later assessments of my right leg support the view I had had D deficiency related development problems in infancy and early childhood. Diagnosis was spinal stenosis due to degenerative processes effecting the spine and compressing the spinal cord. I was referred to a neurosurgeon but have so far managed to delay surgery and hope to put it off for as long as possible.

Neurological/sensory perceptual disorders

(1985) EEG showed atypical epilepsy (described as a ‘highly marked central abnormality’).
(1990) Early childhood diagnosis of autism reconfirmed by autism expert Dr Lawrence Bartak, Monash Medical Centre.
(1992) Diagnosed with a visual perceptual processing disorder.
(2007) Mid childhood diagnosis of 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.
(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.
(2010) During a medication review, aged 46, I was diagnosed with the Dissociative Disorder of DID (Dissociative Identity Disorder). DID is NOT A PERSONALITY DISORDER. It is listed in the DSMV as a condition within the 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.

“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)

RETIREMENT

Having been a lecturer since 1994 and an autism consultant since 1996, yesterday I announced my retirement. I will continue to do e-consulting and e-lectures and I would like to thank my supporters and my critics for the journey.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Donna Williams Diagnosis Controversy

…she mapped 17 points on the face, such as the corner of the eye and the divot in the upper lip. When Aldridge calculated the overall geometry of the face using these points, and compared children with autism and typically developing children, she found statistically significant differences in face shape.

What the study found was:

Children with autism have a broader upper face, including wider eyes.
Children with autism have a shorter middle region of the face, including the cheeks and nose.
Children with autism have a broader or wider mouth and philtrum — the divot below the nose, above the top lip.

er… broader upper face?

wider set eyes?

wider mouth?

wider philtrim

what’s more, in the study, they found 2 distinctly different sets of facial features which appeared to correspond to those with an autism diagnosis and those with an Asperger’s Syndrome diagnosis with the more ‘big headed’ type far more correlated with AS than autism. And will they find that this correlates with recent findings of two distinctly different types of autism?

I’d like to know if this has anything to do with having a face that doesn’t seem to change much with age.
And did my face change as I grew up?

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Autistic Facial Characteristics Identified

I wrote Like Colour To The Blind to voice three very controversial areas that I felt strongly about; the visual fragmentation of visual perceptual disorders, the importance of augmented and alternative communication systems for voiceless people and the search for selfhood buried underneath stored learning, something so many people struggle with in silence until its often too late.
Blurb

Like Colour To The Blind is the third book in the autobiographical series and like each book can be read as a stand alone book. Dared into marriage with someone also on the autism spectrum, Donna finds herself living with Ian in a small cottage in Essex. They develop a camaraderie with Alex, a teenager with autism, just beginning to find his voice for the first time through typed communication. As the three of them discover the world of tinted lenses they encounter a remarkable cohesive 3D world their own visual perceptual fragmentation has never shown them before. Whilst Donna has spent years tearing down the invisible walls of her Exposure Anxiety, Ian has plans for them to move to an isolated farm in the middle of the Welsh countryside to live with sheep, pigs and a ‘horse that simply is’. A remarkable addition to Donna Williams‘ first two international bestsellers in the mainstream publishing world and now sold internationally, you will laugh and you will cry, you will cringe and you will cheer your way through Like Colour To The Blind.

What readers said:

Having a relationship of any kind can be a journey that takes you to places never before experienced. Add to that relationship another component, as in this case, autism, and you will see just how difficult and joyful the journey can be. In Like Colour To The Blind, Donna Williams has mapped out for us what having a loving, trusting relationship is all about. For those of us who take our relationships with others seriously, this book will cause you to take a second look and see there is room for improvement on that journey to experiencing the fullest of what being a “couple” mean.

SPECIAL MAY OFFER: Buy a signed copy of Like Colour To The Blind from my website this month of MAY 2012 and name your FREE gift (an Aspinauts Tshirt, music CD, 10 art cards or a Jam Jar DVD).

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Alexithymia, visual perceptual disorders and typed communication – Like Colour To The Blind

El testimonio de Donna Williams constituye una aportación esencial en la lucha contra el autismo. El saber que extrae de su propia experiencia vital está cargado de enseñanzas para todos aquellos concernidos por esta forma extrema de la experiencia humana: las familias, los profesionales, sean éstos psicólogos, psicoanalistas, psiquiatras o médicos… más información.

I did a Skype interview with a gathering of people in bookshop in Guatemala. Soon, in Barcelona, La Coruna, and Seville.

WHY I WROTE IT

I wrote, Somebody Somewhere because I was changing so fast I feared I’d move on from this important new phase without ever documenting my perception, thinking, values and communication style at that time. Somebody Somewhere was so completely different to Nobody Nowhere and exposed a world of such different, forgotten citizens of the world, that the story had to be told, to give a voice to the voiceless, to be a starting point for solidarity and building bridges. It too became a number one international bestseller.

ENGLISH BLURB

Donna’s Williams’ second number one international bestseller in the mainstream publishing world, Somebody Somewhere is the second book in the autobiographical series and like each book can be read as a stand alone book. Diagnosed in the 1960s as psychotic at the age of two when autism was known as Childhood Psychosis, Donna has lived 26 years believing she was born mad. Now, Donna meets psychologist and autism expert Dr Marek who reconfirms her diagnosis with the more modern day term of autism and offers to work with her. But when he suggests he can give her training in social skills and handshakes, she fobs off his offer. Instead, she determines to get from him the non-autistic translations for the array of experiences and concepts she has only ever made sense of in her own special language, kept secret within her own world. Dr Marek is soon not the only teacher. Navigating the combinations of xenophobia, charity, curiosity and kindness, Donna manages to graduate as a teacher, then travels overseas to work with autistic children and other adults like herself. In the process, she finds a way of belonging and ‘simply being’ among others without selling out who she really is and lays foundations for changing forever the way autism is understood.

WHAT READERS SAID:

By illuminating her own unique perceptions, she allows us to understand our own perceptions as never before…And oh, can she write – The New York Times

Every few years I read a book that completely captivates me, taking over my imagination and changing forever my perception of the world. Somebody Somewhere is such a book – The Washington Post

To be able to do what Donna Williams has done, by age 27, and to write about it so poignantly and so articulately is to function on a higher level than most ‘normal’ folk achieve in a lifetime – Boston Globe

Provides a shining light into the dark mystery of autism – Detroit Free Press

TO GET A SPANISH COPY:

You can order Alguien en algún lugar from the publisher at this website:

This item originally posted here:

Help for Autism in the Spanish Speaking World

It wasn’t my family who then took me. It was a ‘foster mother’. I had learned to stab meat with a fork and raise the entire thing to my mouth but I ate all vegetables with my fingers and scooped mash up with my hand. At school we didn’t have a cafeteria like in the UK. It was all lunches from home (and with an alcoholic mother that wasn’t going to happen), lunch orders that arrived in bags if you had the ability or parent to write on the bag for you so the shopkeeper could fill the order (didn’t have that either), or, as in my case, having the script of ‘five o’ chips, five o’ cakes’ I could get 10 cents worth of chips and potato cakes. That was my school lunch for 7 years and it never came with cutlery or a place at any dinner table.

When I was 2-4 my grandparents (who lived in our shed) would hand feed me with raisins, biscuits and tea to encourage me to interact, trust and snuggle up (and it worked . Down the road at Mrs C’s until age 3-4, I was hand fed with squid and other Italian cooking. In our house, from 3-7, I’d lived on fruit from the fruit trees, drinking tubs of honey and from opened tins of sweetened condensed milk plus celery sticks and lettuce leaves given to the rabbit, biscuits given to the dog, and the seed in the aviary. At my father’s car yard I was given pies, sausage rolls, pasties, cakes and icecream or he’s take me to KFC where we bought the night’s dinner (yay Dad, although I’m gluten and casein intolerant My mother tried to teach me cutlery when I was 3 and, in my memory, ended up jabbing me in frustration with the fork when I couldn’t learn (yes, she had as many or more challenges than me).

At 8-10 at our next house, I ate from the pantry, mostly biscuits, popcorn, dried break, dry crackers, then the fridge for ice cream and from fruit trees down the lane ways. I found I could shop-eat at the supermarket and would go there to have icing raids before they chased me out. I was introduced back to whole meals on a plate at a table when I was 9-11 years old. So freaked out by the exposure of sitting with and before others, so freaked out by complying with putting THEIR food into MY body, I spent age 9-11 vomiting it back up in the bathroom to get it out of myself and undo this feeling of ‘rape’ (that’s Exposure Anxiety for you). Then my family mirrored the entire living room wall and I’d take my plate and go eat with my reflection, watching TV in the mirror as I ate with my hands, but at least we’d graduated, I was eating from a plate. I did learn to stab meat and raise the whole thing to my mouth, but scooping with a fork was not working and picking up each vegetable to stick it onto the fork to then bring it to my mouth seemed so tedious and futile that it distracted from enjoying the food at all. So I continued to eat my vegetables with my fingers and scoop mash into my mouth with my hand. My family didn’t mind. I was eating.

When I was around 8-12, my parents were friends with people who wanted to ‘go out for a meal’. My older brother could go. He wasn’t feral. But what to do with Moi? They would go out but leave me home… at first with a babysitter, but later just on my own in the house. I was not considered able/acceptable to be included as they were.

When strangers in cafes and restaurants freak out, they trap kids like I was at home, losing skills we might otherwise have been challenged to learn. Sure, they’ve gone out for a peaceful, lovely time. So if an autie gives you a free show, enjoy the diversity. People pay good money for that level of entertainment. OK, so its your world too. Yeah, but you’ve probably spent your whole life enjoying that privilege. Just maybe, you can afford a little generosity now and then in our crowded, conformist, judgmental, hierarchical world.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Eating out with a child with autism

idealising people
will attract narcissists
being a pleaser
will lead to be used
being a victim/door mat/massochist
will lead to being victimised by bullies/sadists/narcissists
being false or forcing yourself to be what you are not
will lead to being surrounded by false people or despised by real ones

liking yourself, being comfortable with yourself
will eventually lead to others who also like themselves and are comfortable with themselves

there will be neighborhood or community houses near you
any community group you can join once a week would give you some practice
volunteering would also give you practice in social contact with others

it is about challenging yourself
and that’s very very very different to just ‘putting it on’

one is about being
the other about appearing

if you practice being you will attract people with integrity
if you practice appearing you will attract game players

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.

This item originally posted here:

Attracting friends