Ari Ne'eman appointed to IACC

Ari Ne'eman, the President of the Autistic Self Advocacy Network (ASAN) has been appointed to the Inter-Agency Autism Coordinating Committee (IACC), which is a US federal advisory committee. What does this mean? I don't know, I'm from Australia. Go ask someone else what it all means.

I see that other new members of the IACC include two people associated with Autism Speaks, someone connected to the MIND Institute and a neuroscientist who studies synapses. Interesting company for Ari, no doubt.

News release from the US Dept. of Health and Human Services:
Secretary Sebelius Announces New Members of the Interagency Autism Coordinating Committee
http://www.hhs.gov/news/press/2010pres/04/20100430a.html

Wendy Lawson to appear on ABCTV tomorrow night

The ABC television show Compass is going to run a story about some Australian high-functioning adult autistics on Sunday May 2nd 2010 at 10pm. On the plus side, Wendy Lawson will be one of those people. On the negative side, the blurb in the promo of this story presents a negative view of autism, and I can only assume that this represents the editorial direction of this documentary.

"What if you were highly intelligent, but remained trapped within a disorder that made others see you as inarticulate, odd or disabled?"

The old neurotypical person trapped within autism cliche. If I only had a dollar for every time I've seen that one. I'd like to point out that I don't just appear odd, I am odd! And you can like it!

"James, Jeanette, Akash and Wendy tell us about their individual struggles to fit into a world they're not made for."

Or maybe a world that is not accommodating?

"Their stories include moving perspectives from their parents, siblings and children, and sobering revelations about how vulnerable they are."

Oh yes, it's all about vulnerability, nothing to do with neurotypical people behaving badly.

So, I guess we have to be grateful that the Australian media in the year 2010 has woken up to the possibility that not all autistics are poignant little boys, but we still have to listen to those ancient cliches and negative language like the word "disorder", a term which British autism clinicians rejected years ago in favour of the value-neutral term "condition". This is only Australia.

Alone in a Crowded Room
Compass
ABCTV
http://www.abc.net.au/compass/

Wendy's Web Page
http://www.mugsy.org/wendy/

Watching Stephen Wiltshire in Sydney

I've been watching via the internet the famous autistic artist Stephen Wiltshire MBE creating one of his intricate cityscape artworks during his visit to Sydney. I love the way that he holds his pen while drawing with a grip that I believe is considered by schoolteachers to be completely incorrect. What do they know, anyway?

http://www.viostream.com/autismspectrum/

Opal Whiteley's colourful name

Opal Irene Whiteley – this strikes me as a name that a synaesthete who is fascinated with colours might choose for a baby daughter. Synaesthetes often have a special fascination with colours. Opal Irene Whiteley was a very strange and highly intelligent writer who spent the last fifty-odd years of her life in an institution under the label of schizophrenia. In 1995 Whiteley was posthumously identifed by child psychiatrist Sula Wolff as a case of schizoid personality disorder, and Whiteley has more recently been identified by academic Julie Brown as an autist and a synaesthete. Synesthesia is an inherited condition. Was Opal named by a synesthete parent?

The surname Whiteley has the word white in it. Most people would be reminded of this colour by this surname. The first name Opal is from a type of gemstone. When most people think of an opal I guess they would think of the cheaper and more common but very pretty milky-coloured type of opal. The middle given name Irene is a white-coloured name in my mind, because I’m a grapheme-colour synaesthete, and I associate the letter I with the colour white, and the first letter of a word or name often colours the rest of the name or word in the minds of synesthetes. I have read that the letters I and O are often associated with the colours black or white by grapheme-color synesthetes, and there is a theory to explain this, which I won’t go into now. The name Irene also has a quiet sort of sound that goes well with the gentle, unstimulating colour of white. So you have a name that evokes the colours milky opalescent, white, then white again. That’s one pretty name!

Link to The Diary of Opal Whiteley from The Intersect Digital Library
http://intersect.uoregon.edu/opal/default.html

Many thanks to the people at Intersect for making this free resource available.

P. S. Opal had a sister named Pearl. A definite theme there.

Troubled young child as celebrity - it could only happen in America - a reference list about Jani Schofield

Michael Schofield, Susan Schofield, Shari Roan, Oprah Winfrey, Jay Schadler many others have played their part in this media circus centred around a troubled and vulnerable young girl. With a book by the father in the works, this grim entertainment might never end.

ABC News (2010) Jani tormented by hallucinations. (video) ABC News. March 11th 2010.
http://abcnews.go.com/2020/video/jani-tormented-hallucinations-10079709

Chitale, Radha (2009) Keeping Jani alive: the perils of childhood-onset schizophrenia. ABC News. July 1st 2009.
http://abcnews.go.com/Health/MindMoodNews/story?id=7976374&page=1
http://abcnews.go.com/print?id=7976374

Ho, Lawrence K. (2009) Photos: Jani struggles with schizophrenia. Los Angeles Times. June 29th 2009?
http://www.latimes.com/features/health/la-he-schizophrenia-pictures,0,5932182.photogallery
[a photo gallery by the Los Angeles Times]

Jani’s Journey.org
http://www.janisjourney.org/

Kelsen, Don (2010) Hushing the intruders in her mind. (video) Los Angeles Times. YouTube. January 4th 2010.
http://www.youtube.com/watch?v=u5tabap332c
[lengthy article]

Kelsen, Don & French, Tim (2009) Young schizophrenic at her mind’s mercy. (video) Los Angeles Times. YouTube. June 29th 2009.
http://www.youtube.com/watch?v=UTUMt05_nCI

Kennedy Montgomery, Lisa (2009) Mental daugher. (sic) July 4th 2009. Bryan Suits. KFI AM 640.
http://www.kfiam640.com/podcast/BryanSuits.xml
[Michael Schofield interviewed on talk radio, July 3rd as date of broadcast cited by some sources]

Oprah Winfrey Show (2009) The 7-year-old-schizophrenic. Oprah.com October 6th 2009.
http://www.oprah.com/health/The-7-Year-Old-Schizophrenic
http://www.oprah.com/health/The-7-Year-Old-Schizophrenic/print/1
videos of parts of this show at YouTube:
http://www.youtube.com/watch?v=5BLv7FMp-1s&feature=related
http://www.youtube.com/watch?v=a2j4VtP9nhM&NR=1
http://www.youtube.com/watch?v=OHQIeqWB-UM&NR=1
http://www.youtube.com/watch?v=IJFAcfl5TRw&feature=related
http://www.youtube.com/watch?v=adrkZXqk59g&NR=1
http://www.youtube.com/watch?v=yqX5SK-IVvg&feature=related
http://www.youtube.com/watch?v=y5wMC3PBAWw&NR=1
http://www.youtube.com/watch?v=IkNaLToGavM&NR=1
http://www.youtube.com/watch?v=-eXDQPC20os&NR=1
http://www.youtube.com/watch?v=yBHehebPvl8&NR=1
http://www.youtube.com/watch?v=axQEjqes6kM&NR=1
http://www.youtube.com/watch?v=XR1o8K4MeMs&NR=1
[This less edited video clip shows Jani avoiding eye contact a lot and also displaying her hand tic]
http://www.youtube.com/watch?v=UEyWvfdcH2g&NR=1
[an edited promo video for the Oprah show, Jani showing obvious discomfort with talking with Oprah]

Oprah Winfrey Show (2009) Behind the scenes – living with childhood schizophrenia. Oprah.com October 6th 2009.
http://www.oprah.com/oprahshow/Behind-the-Scenes-with-a-7-Year-Old-Schizophrenic
http://www.oprah.com/oprahshow/Behind-the-Scenes-with-a-7-Year-Old-Schizophrenic/print/1

Oprah Winfrey Show (2009) Children with schizophrenia find friendship video. Oprah.com October 5th 2009.
http://www.oprah.com/oprahshow/Children-with-Schizophrenia-Find-Friendship-Video

Oprah Winfrey Show (2009) Understanding childhood schizophrenia video. Oprah.com October 5th 2009.
http://www.oprah.com/health/Understanding-Childhood-Schizophrenia-Video

Oprah Winfrey Show (2009) Raising a mentally ill child video. Oprah.com October 5th 2009.
http://www.oprah.com/health/Raising-a-Mentally-Ill-Child-Video

Oprah Winfrey Show (2009) Oprah meets a child battling schizophrenia video. Oprah.com October 2nd 2009.
http://www.oprah.com/oprahshow/Oprah-Meets-a-Child-with-Schizophrenia-Video

Roan, Shari (2010) ABC News’ ‘20/20’ reports on Jani Schofield. Booster Shots (blog) Los Angeles Times. March 12th 2010.
http://latimesblogs.latimes.com/booster_shots/2010/03/jani-schofield-schizophrenia-children.html

Roan, Shari (2009) Hushing the intruders in her brain. Los Angeles Times. December 29th 2009.
http://articles.latimes.com/2009/dec/29/science/la-sci-jani29-2009dec29
[lengthy article]

Roan, Shari (2009) Readers offer to help Jani. Booster Shots (blog) Los Angeles Times. December 29th 2009.
http://latimesblogs.latimes.com/booster_shots/2009/12/schizophrenia-jani-schofield.html

Roan, Shari (2009) Oprah interviews Jani Schofield. Booster Shots (blog) Los Angeles Times. October 6th 2009.
http://latimesblogs.latimes.com/booster_shots/2009/10/jani-schofield-schizophrenia.html

Roan, Shari (2009) For Jani Schofield, an abrupt end to first grade *. Booster Shots (blog) Los Angeles Times. September 18th 2009.
http://latimesblogs.latimes.com/booster_shots/2009/09/jani-schofield-schizophrenia.html
[lengthy article]

Roan, Shari (2009) Jani and the hospital therapy dog. Booster Shots (blog) Los Angeles Times. July 19th 2009.
http://latimesblogs.latimes.com/booster_shots/2009/07/schizophrenia-schofield.html

Roan, Shari (2009) For Jani, some progress and some major setbacks. Los Angeles Times. July 9th 2009.
http://articles.latimes.com/2009/jul/09/local/me-jani-update9

Roan, Shari (2009) Childhood-onset schizophrenia remains a mystery. Los Angeles Times. July 8th 2009.
http://www.latimes.com/features/health/la-me-jani-schofield-nimh9-2009jul9,0,5490298.story

Roan, Shari (2009) Jani’s at the mercy of her mind. Los Angeles Times. June 29th 2009.
http://www.latimes.com/features/health/la-he-schizophrenia29-2009jun29,0,4834892.story
[one source gives date of this article as August 1st 2009]

Schadler, Jay (reporter) Weinraub, Claire (producer) (2010) The lost children. 60 Minutes. April 8th 2010.
http://sixtyminutes.ninemsn.com.au/article.aspx?id=1037278
[Description of ABC 20/20 story about girls in the US diagnosed with childhood schizophrenia broadcast on Australian 60 Minutes on April 8th 2010, no transcript available]

Schadler, Jay (reporter) Weinraub, Claire (producer) (2010) Full show: inside the world of childhood schizophrenia. 20/20. ABC News. March 15th 2010.
http://abcnews.go.com/2020/video/inside-world-childhood-schizophrenia-10090286
[video of a lengthy news story about Jani Schofield and other girls diagnosed with “childhood schizophrenia]

Schofield, Michael (2009) It's just another day, when people wake from dreams with voices in their ears... that will not go away. January First. (blog) May 2nd 2009.
http://www.januaryfirst.org/www.januaryfirst.org/Blog/Entries/2009/5/2_Entry_1.html
[Jani’s father outlines his plans for the book that he is writing about their experiences with Jani]

Stohler, Elissa (2010) Schizophrenia in children: questions remain. 20/20. ABC News. March 11th 2010.
http://abcnews.go.com/2020/schizophrenia-children-faqs/story?id=10066582
http://abcnews.go.com/print?id=10066582

Stohler, Elissa (2010) Families Grapple With Costs of Childhood Schizophrenia. 20/20. ABC News. March 10th 2010.
http://abcnews.go.com/2020/schizophrenia-children-families-grapple-costs-emotional-financial/story?id=10053795

Talk about the Oprah Winfrey Show (2009) Exclusive: the 7-year-old schizophrenic. Oprah.com September 30th 2009.
http://www.oprah.com/community/thread/117944?start=0&tstart=0
[40 page forum discussion thread about the Oprah episode about Jani]

Zimbert, Max (2010) Rules of engagement. Glendale News Press. January 25th 2010.
http://www.glendalenewspress.com/articles/2010/01/25/education/gnp-psychology012510.txt


Upcoming book by Jani's father?

Michael Schofield has a book deal to write a book titled “January first: one child’s battle with schizophrenia”. It appears that the publisher will be Broadway Books, which is a part of the Crown Publishing Group/Crown Trade Group, which appears to be a part of Random House.
http://www.waxmanagency.com/deals.html

Schofield, Michael (2009) It's just another day, when people wake from dreams with voices in their ears... that will not go away. January First. (blog) May 2nd 2009.
http://www.januaryfirst.org/www.januaryfirst.org/Blog/Entries/2009/5/2_Entry_1.html
[Jani’s father outlines his plans for the book that he is writing about their experiences with Jani]

Some relevant references that are not specifically about Jani

Henderson, Mark (2009) Genetic mutation may be why some people need less sleep than others. TimesOnline Times. August 14th 2009.
http://www.timesonline.co.uk/tol/life_and_style/health/article6795361.ece

Wikipedia contributors (accessed 2010) Ordinal linguistic personification. Wikipedia, The Free Encyclopedia.
http://en.wikipedia.org/w/index.php?title=Ordinal_linguistic_personification&oldid=340471498


Copyright Lili Marlene 2010.

Jani Schofield - the evidence is there....

I don’t need to go a-hunting to find more evidence that indicates that Jani Schofield has unrecognized synesthesia. The evidence jumps out at me unbidden as I go about my business. Jani is a young Californian girl who has been given the diagnosis of childhood-onset schizophrenia and has been at the centre of a media circus since last year. Jani is the subject of a book that her father has been commissioned to write. I am of the opinion that Jani’s so-called psychotic behaviour could possibly by fully explained as the result of a combination of synesthesia, autism, OCD, intellectual giftedness (a terribly burdensome mental abnormality), inept parenting and a well-developed imagination. There is some anecdotal evidence that synesthesia, autism, OCD, Tourette’s and intellectual giftedness are a group of traits that are often found in each other’s company, so it isn’t far-fetched at all to propose that one child could have four of these conditions. The famous British Asperger savant Daniel Tammet has three, possibly four of these traits. And it isn’t true that all autistic kids lack imagination – some have heaps of it, and some create their own fantasy worlds. In his autobiography Born on a Blue Day, Daniel Tammet described in great detail an imaginary friend that he created as a way of coping with loneliness when he was a boy.

I’ve been looking through press stories and videos on the internet while working on compiling a reference list of the information that is available about Jani Schofield on the internet. The very size of this list is, I believe, evidence of a type of child abuse. Jani has been exposed to an incredible amount of media exposure on top-rating television shows, at least two newspapers and a web site created by her parents revealing every detail of her life. All this invasion of her privacy happening at the tender age of 7 years, way too young to give informed consent to being made into a mass media star, and much too young and vulnerable to have the power to refuse.

So what is this evidence of synesthesia that I’m raving about? Well, first some explanation. Bear with me please. There are ways in which one can definitely tell the difference between synesthesia and psychotic hallucinations or psychotic delusions. In fact synesthesia experts have compiled lists of the defining characteristics of synesthesia. One could consider these lists to be diagnostic criteria for synesthesia. One characteristic of synesthesia is that it shows remarkably exact consistency over long periods of time. A very specific trigger will reliably result in the exact same corresponding sensory or cognitive experience over and over again. This is because synesthesia is a reflection of connections in the brain. These fixed relationships between triggers and experiences can span years, even lifetimes.

Another thing that is a point of difference between the synesthete and the schizophrenic is that the synesthete knows the difference between their own triggered syne-sensory or syne-cognitive experiences and non-synesthesia experiences that are triggered by sensing of or knowledge of the world outside of one’s noggin. Us synesthetes know that synesthesia experiences are not “real” in that they are not a reflection of the non-mental world that all humans and creatures experience, even though synesthesia experiences can “feel” very much like knowledge or sensing, and they are real in that they are a reflection of real structures in the brain. I guess synesthetes learn through being a part of a culture that our experiences are idiosyncratic and have no logical basis. But for some reason that I don’t understand, schizophrenics apparently believe their hallucinations are real. I guess it is a disease of gullibility. They believe all types of things that no sensible person would believe. As a non-schizophrenic I really don’t know how schizophrenia works, but I’m pretty sure a genuine, actively psychotic schizophrenic would not spontaneously make a distinction between a thing perceived that is real and a similar thing perceived that is not real. That surely is not the sort of thing that a psychotic person would be expected to do. But I’ve just watched a video in which Jani Schofield appears to make exactly this type of distinction, unprompted. At the beginning of the video below, a lady asks Jani (playing on a swing outdoors) if she is seeing a lot of numbers “right now”. Jani replies that she sees “two tens, the real ten and, and the regular ten.” Then the interviewer lady (journalist?) asks someone else (rhetorically?) whether Jani is seeing stuff that’s really there and it is just that they aren’t seeing it. The setting is a wide-open landscape, and from the video one can’t be sure that there isn’t a real number ten that Jani could see on a sign or written somewhere, or even discernable in a ten-like pattern in the grass or graffiti somewhere. What could it possibly mean when Jani makes a distinction between a real and a non-real number ten? As a synesthete who experiences ordinal-linguistic personification (OLP) of numbers and letters, there is an obvious explanation. Does Jani see a real number ten written somewhere in the landscape, which instantly triggers a synesthetic vision of the number ten, in all of its reified glory? And why is Jani’s non-real ten a “regular” ten? Is this because the word “regular” is a reference to the incredibly fixed, reliable nature of her number-related synesthesia experiences? I am more convinced than ever that Jani is a synesthete, and is also not psychotic. Does it take one to know one?

Kelsen, Don and French, Tim (2009) Young schizophrenic at her mind’s mercy. (video) Los Angeles Times. YouTube. June 29th 2009.
http://www.youtube.com/watch?v=UTUMt05_nCI


And here are some more interesting videos of Jani Schofield. In the one below from the Oprah show Jani is seen avoiding eye contact as though Oprah has flesh-dissolving laser lights streaming out of her eyes. Autism I wonder? This video also shows the hand tic of Jani’s that is seen in most of the many videos of Jani that one can find on the internet. Are tics a symptom of schizophrenia? I don’t think so, but I believe tics and repetitive movements are quite common in autistic people.
http://www.youtube.com/watch?v=XR1o8K4MeMs&NR=1


In this video Jani makes it abundantly clear that she does not want to talk with one of the most popular people in the world of entertainment in the United States. What kind of unsociable person would snub Oprah? I think I know what kind.
http://www.youtube.com/watch?v=UEyWvfdcH2g&NR=1

Syd Barrett featured in music magazine

I've written about Syd Barrett before, so I thought I'd let any of my readers who are also Barrett fans know that the March 2010 edtion of Mojo music magazine (issue 196) has some stories about Syd/Roger Barrett in it.

Jani Schofield - I’m sorry that I’ll have to add this sad and shameful tale to my list of famous synesthetes

Jani (January) Schofield b. 2002, Jani is a young intellectually gifted Californian girl who has been given the controversial diagnosis of "child-onset schizophrenia" by a psychiatrist at UCLA (University of California, Los Angeles), but has not responded to treatment, and she has been at the centre of a media circus. Jani has been featured on the Oprah TV show, has appeared on ABC News’ 20/20 TV show and Australian 60 Minutes, and has also been featured in a number of articles in the Los Angeles Times. Jani’s parents have a website recounting Jani’s life in detail, which solicits for donations for Jani. Her father has reportedly been commissioned to write a book about Jani. Jani reportedly has an IQ of 146, but has never attended a normal classroom for any length of time. Jani has been institutionalized seven times in psychiatric hospitals.

Jani has been described by the media and her parents as suicidal and violent, but she can reportedly behave well and show stability when doing things that she enjoys, such as when people engage her in mental stimulation. Jani displays tics and flaps her hands, but a diagnosis of autism or Asperger syndrome has reportedly been considered but rejected by clinicians.

Jani's diagnosis of child-onset schizophrenia appears to be based upon the fantasy/imaginary/delusional world that Jani enjoys living in a lot of the time. Jani even has a name for this place - the island of Calalini. Jani claims to have many strange friends (who only exist in her mind), who reportedly bite and scratch her. In her earlier years these “friends” took the form of rats, cats and playmates with names that unaccountably were units of measurement, numbers or other items that belong in learned linear sequences. For example, Jani’s imaginary friends included rats named Wednesday, 200 and Saturn, a cat named 61, and girls named 100 degrees and 24 hours. In December 2009 it was reported that Jani’s “hallucinations” are now personified numbers. At the very beginning of the June 29th 2009 video about Jani produced by the LA Times Jani tells an interviewer that her ambition for a job when she grows up is to be a veterinarian, then she thinks again and quickly says she wants to be a "number checker" whose job it is to draw blood from "numbers" and make them "feel better". Clearly Jani is imagining or experiencing personified numbers. Given what we know about Jani and her "imaginary friends" who are numbers etc, she would appear to be a case of ordinal-linguistic personification (OLP), which is a form of synesthesia/synaesthesia, which is a generally harmless neurological condition. Certainly most people who have OLP do not have their conscious existence dominated by it in the way that it seems to affect Jani, but there could be many reasons why there is so much focus on the more bizarre aspects of Jani's mental life in videos and articles about Jani. Jani and her family wouldn't be famous if she wasn't believed to be mentally ill. Jani's obsessive focus on numbers makes me wonder if Jani has some type of mathematical obsession typical of autistic, intellectually gifted or savant people, which her parents are either unaware of or do not wish to highlight. Many people believe that Jani is autistic, but her parents clearly embrace schizophrenia as an explanation for Jani's many unusual characteristics and behaviours, to the exclusion of all other explanations.

Does it ever actually happen that a synaesthete's synaesthesia is medically misdiagnosed as schizophrenia? I have read about some cases, and the famous neuroscientist and author V. S. Ramachandran has written about one such case in his 2011 book The Tell-tale Brain. On page 78 of the William Heinemann paperback edition can be found Ramachandran's account of the misdiagnosis of synaesthesia in a female patient as hallucinations of schizophrenia. The female synaesthete patient was apparently prescribed antipsychotic medication (similar to the type of drugs given to Jani), until her parents did some research, found out about synaesthesia and shared this information with their daughter's doctor. Apparently the synaesthete was promptly taken off the drugs when this dreadful misdiagnosis became clear.   another less damaging case of a young synaesthete being misdiagnosed as psychotic can be found on page 10 of the excellent book Wednesday is Indigo Blue by synaesthesia researchers Richard Cytowic and David Eagleman. The baby-sitter of a four-year-old synaesthete insisted that the child was "psychotic" after the innocent child described his visual experiences evoked by apple juice, and also depicted sounds in crayon drawings. Fortunately the child was blessed with educated parents who initially had not known about synaesthesia, but also had the good sense to refrain from writing off their toddler as a mental case. They did their own research in a university library, searching for alternative explanations and they eventually contacted one of the authors of the book, asking his opinion.

A December 2009 Los Angeles Times article contains a hint that Jani’s “hallucinations” display a consistency that is the hallmark of genuine synesthesia “She told me her hallucinations always wear the same clothes.” Another hint that Jani experiences OLP is her violent objection to being called by her full first name. Jani reportedly hates the name "January". Is this because her OLP associations with this month of the year clash with her self-image, or are simply not liked by her? Synesthesia is an inherited condition. One has to wonder at the coincidence in which a child who appears to have OLP has been given a month of the year for a first name.

One could possibly argue that Jani does not have OLP because the personification of her imaginary companions goes beyond the limits of the typically reported experience of OLP – Jani’s companions reportedly talk to her, move and even bite her. It is hard to judge whether Jani’s accounts are a combination of OLP and imagination, or could possibly be confabulation to explain a confusing experience of OLP juxtaposed with other sensory types of synesthesia. According to the Jani’s Journey website Jani “experiences hallucinations in four of her five senses.” Another possible difference between Jani’s experiences and OLP is that Jani’s personifications have involved animals, while I am not aware of any report of OLP that does not involve human-like personifications. Whatever the case, I have read no explanation of why Jani’s mind has always been so extremely occupied with items that belong in learned linear sequences, while a number of different types of synesthesia (sequence->space synesthesia, number form synaesthesia, OLP and grapheme->colour synaesthesia) do involve items that belong in learned linear sequences. Reported experiences of synesthesia could easily be mistaken as hallucination or delusion or psychosis by non-synesthetes who do not know what synesthesia is. Synesthesia appears to be the most comprehensive explanation for Jani’s “hallucinations”.

I favour OLP, possibly combined with sequence->space synaesthesia, as an explanation for Jani's thing with numbers and other sequential items, but there is another possible cause for a person "seeing" numbers that aren't really there. This is a quote from the 2010 book The Mind's Eye by neurologist Oliver Sacks: "People with disorders of the visual pathway (anywhere from the retina to the visual cortex) may be prone to visual hallucinations, and Dominic ffytche and his colleagues estimate that about a quarter of these patients who hallucinate see "text, isolated words, individual letters, numbers, or musical note hallucinations." Such lexical hallucinations, as ffytche and his colleagues have found, are associated with conspicuous activation of the left occipitotemporal region, especially the the visual word form area ..." In a 2009 TED talk Sacks explained the difference between psychotic and non-psychotic visual hallucinations (at 10.50 minutes) - psychotic hallucinations address the person experiencing them, while the other type does not. The way Jani's experiences are described they seem to fit into the category of psychotic hallucinations, but there could be reasons why they are presented as such. I doubt that Jani could have an undetected visual disorder or visual disability that is serious enough to cause the type of visual hallucinations described by ffytche and Sacks, but I think it is still worth mentioning.

In December 2009 the Los Angeles Times reported that Jani still experiences her “hallucinations” frequently, even though she has been medicated with some of the most powerful anti-schizophrenia drugs (and a bipolar drug as well, just to be sure).


Link to video of a news story about Jani and other girls diagnosed with “childhood schizophrenia”
http://abcnews.go.com/2020/video/inside-world-childhood-schizophrenia-10090286

Link to the ABC 20/20 story at the Australian 60 Minutes web site
"The lost children"
reporter Jay Schadler, producer Claire Weinraub.
http://sixtyminutes.ninemsn.com.au/article.aspx?id=1037278

"Jani’s at the mercy of her mind"
Shari Roan
Los Angeles Times August 1st 2009.
http://www.latimes.com/features/health/la-he-schizophrenia29-2009jun29,0,4834892.story?page=1
[Jani has been the subject of many stories in the Los Angeles Times newspaper]

"Hushing the intruders in her brain."
Shari Roan
Los Angeles Times December 29th 2009.
http://articles.latimes.com/2009/dec/29/science/la-sci-jani29-2009dec29

Jani’s Journey.org
http://www.janisjourney.org/

"The 7-year-old-schizophrenic"
Oprah.com
http://www.oprah.com/health/The-7-Year-Old-Schizophrenic

Ramachandran, V. S. The tell-tale brain: unlocking the mystery of human nature. William Heinemann, 2011.

Sacks, Oliver The Mind's Eye. Picador, 2010.

Oliver Sacks: what hallucination reveals about our minds. TED. filmed February 2009, posted September 2009.
http://www.ted.com/talks/oliver_sacks_what_hallucination_reveals_about_our_minds.html

Dossetor, D. R. (2007) 'All that glitters is not gold': misdiagnosis of psychosis in pervasive developmental disorders--a case series. Clinical Child Psychology and Psychiatry. 2007 Oct;12(4):537-48.
http://www.ncbi.nlm.nih.gov/pubmed/18095536?ordinalpos=12&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Ruth, M. and Ryan, M.D. (1992) Treatment-Resistant Chronic Mental Illness: Is It Asperger's Syndrome? Hospital and Community Psychiatry. August 1992. 43, 807-881.
http://www.ps.psychiatryonline.org/cgi/content/abstract/43/8/807 


Further reading about synaesthesia, object personification and ordinal-linguistic personification synaesthesia

Ordinal-linguistic personification (OLP, or personification for short) 
Wikipedia 
http://en.wikipedia.org/wiki/Ordinal_linguistic_personification 

Synesthesia 
Wikipedia http://en.wikipedia.org/wiki/Synesthesia 

Amin, Maina Olu-Lafe, Olufemi, Claessen, Loes E., Sobczak-Edmans, Monika, Ward, Jamie, Williams, Adrian L. and Sagiv, Noam (2011) Understanding Grapheme Personification: A Social Synaesthesia? Journal of Neuropsychology. Vol. 5, No. 2, pp 255-282.

http://people.brunel.ac.uk/~hsstnns/reprints/2011_Amin_et_al__personification.pdf

http://dspace.brunel.ac.uk/bitstream/2438/6460/2/FullText.pdf

Carriere, Jonathan, Malcolmson, Kelly, Eller, Meghan, Kwan, Donna, Reynolds, Michael and Smilek, Daniel (2007) Personifying inanimate objects in Synaesthesia.  Journal of Vision. June 30, 2007 vol. 7 no. 9 article 532. doi: 10.1167/7.9.532

http://www.journalofvision.org/content/7/9/532.abstract

Cytowic, Richard E. and Eagleman, David M. (2009) Wednesday is indigo blue: discovering the brain of synaesthesia. MIT Press, 2009.

http://books.google.com.au/books/about/Wednesday_Is_Indigo_Blue.html?id=EbPGx-Gua9kC

[There are a few interesting pages in this book about personification]

Internet newspaper content to be no longer free?

A note to my readers - after watching Media Watch on ABCTV the other night I think we should expect that the many journalistic articles from newspapers from all over the world that provide and have provided much of the fodder for my list-making activities will become less available in the future, as the great newspapers of the world have found that they can't finance their expensive operations from selling advertising in free online content. They are apparently going to start charging us to read their stuff. I guess this is fair enough, but also a much less convenient situation for people like me. The bit that I really object to is the possibility that some papers will keep their stories completely hidden behind a fee-wall. Apparently we will not be able to view anything of their stories without paying, not even a summary or abstract or title or first few lives. I guess this means their content will be invisible to search engines like Google and will be pretty much invisible to people like me, and will be isolated form the internet and the blogosphere in general. This would be such a stoooopid thing to do. It would diminish our culture in general and it would harm the popularity of any newspapers that take this approach.

So, if you have read someting online that is a story from a newspaper that you read for free, and you would really like to be able to read it in the future without paying, I guess now is the time to make a hardcopy.

Famous synaesthetes list grows

My famous synesthetes list has been added to and now includes 53 famous or notable people. New additions include the musician Justin Chancellor, actress Tilda Swinton and the obsessive thesaurus-writer and son of another obsessive thesaurus-writer John Lewis Roget. Try saying that in a hurry!

See it here:

http://incorrectpleasures.blogspot.com/2009/01/famous-synaesthetes-or-possible.html

Jana Wendt inside of a book


Books that apparently include content about Jana Wendt

Knepfer, Gail (1990) Women of power : playing it by their own rules. (photographs by Colin Beard). Hutchinson, 1990.

Stone, Gerald (2000) Compulsive viewing: the inside story of Packer's Nine Network. Viking, 2000.
[includes a bit of info about Wendt]

Wendt, Jana (2010) Nice work. Melbourne University Press, 2010.
[about people’s working lives]

Wilmoth, Peter (2005) Up close : 28 lives of extraordinary Australians. Sydney : Pan Macmillan, 2005.

Wilson, Ruth (2000) A big ask : interviews with interviewers. New Holland, 2000.


Books by Jana Wendt

Wendt, Jana (2010) Nice work. Melbourne University Press, 2010.
[biographical and autobiographical about people’s working lives]

Wendt, Jana (2007) A matter of principle : new meetings with the good, the great and the formidable. Melbourne University Press, 2007.

Wendt, Jana (1997) Andrew Olle media lecture 1997. [Sydney : 2BL Radio Station], 1997.

Jana Wendt - the Mr Spock of Australian journalism?

Today on the Life Matters show on the ABC's Radio National Jana Wendt was promoting her latest book about people's working lives. She said that she gets a lot of satisfaction from working alone on projects that she finds meaningful, and she described herself as a solitary person. And she didn't sound like she was making apologies for anything, or pleading for understanding from more sociable people. She was just stating a fact. She's always had that cool confidence.

I believe I was the first person to write about the possibility that Ms Wendt is on the autstic spectrum, back in 2007. I have no reason to change my mind on that point.


Jana Wendt: Nice Work
An interview with Richard Aedy
LIfe Matters
ABC Radio National
April 6th 2010
http://www.abc.net.au/rn/lifematters/stories/2010/2862013.htm


Famous people who have been the subject of speculation or rumours about whether they are or were on the autistic spectrum

http://incorrectpleasures.blogspot.com/2007/03/famous-people-who-have-been-subject-of_19.html

Another list update!

I've rather hurriedly twice updated one of my lists:

Clever, Creative, Controversial: A referenced list of 33 famous living people who have been identified in any way as autistic, to any degree, during any period of their life, including famous people diagnosed with Asperger syndrome (AS)

http://incorrectpleasures.blogspot.com/2009/10/clever-creative-controversial.html

You might like to do the quiz that I made to go with this list before reading it, or you might prefer to try the quiz after looking at my list. Or you might prefer to skip both. Whatever you want to do with your Easter break is OK with me.

An Aspergian Quiz
http://incorrectpleasures.blogspot.com/2009/10/aspergian-quiz-1.html

Actress Tilda Swinton is a synaesthete

Goodonya Maureen for breaking the news that the actress Tilda Swinton is a synaesthete. Maureen has posted about this at her blog that is simply titled Synesthesia. Apparently Maureen got the tip from two leading synaesthesia researchers. In the interview published in the Sunday Times in which Swinton described her gustatory synesthesia the journo appears to have not known that Swinton was describing synesthesia, and the journo wrote that Swinton's experiences will no doubt be of interest to shrinks. Hmmmm.

Narnia's white witch a synesthete
Synesthesia
http://mindprisms.blogspot.com/2010/04/narnias-white-witch-synesthete.html

Tilda Swinton: acting feels like a 'mistake'
Lesley White
Sunday Times
March 21st 2010
http://article.wn.com/view/2010/03/21/Tilda_Swinton_acting_feels_like_a_mistake/

David Eagleman lecture on Slow TV - better to tell you late than never

David Eagleman lecture on Slow TV - better to tell you late than never

I’ve recently found the time during this Easter break to take a look at a lecture by the leading US synesthesia researcher Assistant Professor David Eagleman. He’s so young, so accomplished, quite famous for an academic (he’s written a popular fiction book) and quite easy on the eye. Life is unfair.

Anyhow, the title of the lecture is Hearing colors, seeing sounds: the neuroscience, behaviour and genetics of synesthesia. The lecture was given in Australia in June of 2009 for the Centre for the Human Aspects of Science and Technology (CHAST) at the University of Sydney. This talk has been broadcast in two parts, of around half an hour each, since July 2009 on the internet by Slow TV. The lecture includes some discussion about famous synaesthetes and the genetics of synaesthesia. Dr Eagleman also explains why The Synesthesia Battery is such an effective tool for sorting genuine colour grapheme synaesthetes from people who don’t have this condition. I would recommend this lecture to anyone who is interested in synesthesia and has an hour to spare. There’s a lot of interesting visual content, and answers to questions from the audience.

I learned new things about synaesthesia. For example, Prof. Eagleman presented evidence in part 2 that coloured sequence synaesthesia (including coloured letters of the alphabet) is a right-brain phenomenon rather than originating in the left-brain as was previously believed. I find this interesting, as I believe that according to the “testosterone” theory of autism that has been put forward by researchers such as the late US neurologist Dr Norman Geschwind and the UK autism expert Prof. Simon Baron-Cohen, the right hemisphere of the brain is the side of the brain which has its growth enhanced by prenatal testosterone. Very low 2D:4D finger ratios are thought to be a sign that one was exposed to high levels of testosterone in utero. All of this would explain why a number of people in my family have autistic traits, at least two different types of colored sequence synesthesia and very low 2D:4D finger ratios. I’ve never heard of any research having been done on the finger ratios of synesthetes. It seems like an obviously interesting and easy thing to do a study of. Dr Eagleman explained that there are 5 clusters of types of synaesthesia, suggesting that there could be different genes giving rise to it. I wonder if there could be any types associated with high 2D:4D finger ratios? Who knows? Another obvious question is whether or not the presence or absence of synesthesia might be useful as a way of distinguishing the various sub-types of autism. It seems pretty obvious to me. Don't forget - I thought of it first.

I recall Dr Eagleman mentioning in part 1 that some synaesthetes associate (the sound of?) particular musical instruments with personalities and gender, which I guess must be something like ordinal-linguistic personification. This bought to mind a very funny thing that Garrison Keillor once did - The young Lutheran's guide to the orchestra. Its a classic. I know that this comedy piece by Keillor is based on the premise that certain instruments should have players of particular dispositions and religious denominations, but I really do think that this type of synaesthesia must surely be the foundation for the creation and the appreciation of this piece of comedy. Is Keillor a synaesthete? Do we all have some degree of instrument -> personality synaesthesia? Dr Eagleman's talk certainly is thought-provoking!

Hearing colors, seeing sounds: the neuroscience, behaviour and genetics of synesthesia. Assistant Professor David Eagleman. Slow TV. July 2009.
http://www.themonthly.com.au/synesthesia-hearing-colours-tasting-sounds-david-eagleman-1826

Warren Buffett - a most exceptional individual, but not unique

Warren Buffet b. 1930, American investor, businessman and philanthropist, currently the third richest person in the world. In 2008 he was listed as the world’s richest person by Forbes magazine. Buffett has a legendary reputation as an investor, and is known as “the sage of Omaha”. Many books have been written about Buffett and his investment strategies.

As a toddler Buffett showed a lack of confidence when we was learning to walk, and at around the age of 2 he was content to sit at his mother's feet staring quietly at a toothbrush for "two hours at a stretch" (Schroeder 2008 p.46). He had some unusual childhood hobbies - browsing a model train catalogue for hours, repetitively timing marbles rolling down a bathtub with a stopwatch, recording the license plate numbers of passing cars with a friend, memorizing facts. Buffett also collected bottle caps, stamps and coins when he was a boy. He made money from working in his own businesses and bought his first shares at around the age of 10. During his college years Buffett’s prodigious memory made studying easy, but he dressed poorly, had little luck with girls, was an annoying smartarse, a fussy eater and was generally “socially maladjusted” (Schroeder 2008 p. 97). He discovered a much-needed system for getting along with people and self-presentation in Dale Carnegie’s famous book How to win friends and influence people. Buffett conducted his own informal controlled trial of the advice given in this book, and he found that it worked, but Buffett was still a man with a restless mind and a limited diet who had little interest in social climbing.

Buffett’s mother was intelligent and had excelled as a student of mathematics. She was “obsessed with fitting in” (Schroeder 2008 p.207), and was verbally abusive to Warren and his older sister when they were young children. Her family had a history of high intelligence and depression in women, some of them admitted to mental institutions, but no clear diagnosis was made. The biography of Buffett The snowball by Alice Schroeder contains much evidence indicating that Buffett may be an autist (and possibly also his business partner and his mother), it inspired at least two writers to speculate about Buffett and autism (Cowen 2009 p.30), (Lawson 2008), but there is no explicit mention of autism or AS in this book.

Despite his incredible wealth, Buffett is known for his frugal ways and has shown little interest in fashion or fancy food. For a large part of his life Buffett had a wife who he lived apart from but was on good terms with and also openly lived with a female companion, who he married in 2006. Buffett is reportedly an agnostic. Bill Gates, who has also been identifed by various sources as possibly autistic, has also been listed as the richest person in the world, is also known for his philanthropy, also has an unpretentious taste in food, and wears suits of the same Chinese label that Buffett wears, has been described as having a son-like relationship with Buffett. (Rushe 2008).


References

Cowen, Tyler (2009) Create your own economy: the path to prosperity in a disordered world. Dutton, 2009.
http://createyourowneconomy.org/
[Vernon Smith, Sir Arthur Conan Doyle, Peter Mark Roget, Adam Smith, Hermann Hesse, Warren Buffett, Tim Page, Hikari Oe, Craig Newmark, Bram Cohen, Temple Grandin, Glenn Gould, Immanuel Kant, Thomas Jefferson are all discussed in this book with reference to the autistic spectrum]

Lawson, Dominic (2008) The snowball: Warren Buffet and the business of life by Alice Schroeder. Sunday Times. TimesOnline October 12th 2008.
http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/books/non-fiction/article4914636.ece
[In this review of the biography Lawson argues that Buffet possibly has Asperger syndrome.]

Rushe, Dominic (2008) Warren Buffet lifts the lid on his secrets. Sunday Times. TimesOnline September 28th 2008.
http://business.timesonline.co.uk/tol/business/industry_sectors/banking_and_finance/article4837164.ece
[an interesting article about the man and the story behind the biography, no mention of AS or autism]

Schroeder, Alice (2008) The snowball: Warren Buffett and the business of life. Bantam, 2008.
http://www.randomhouse.com/bantamdell/snowball/
[This authorized biography does not mention AS or autism, but does mention Buffett’s “social skill deficiencies” a number of times.]

Numerous clips of interviews with Mr Buffett can be found on YouTube and Google Videos.

A referenced list of 155 famous or important people diagnosed with an autism spectrum condition or subject of published speculation about whether they are or were on the autistic spectrum
http://incorrectpleasures.blogspot.com/2006/09/referenced-list-of-famous-or-important.html