Sunday, April 18, 2010

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.

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

Cytowic, Richard E. and Eagleman, David M. (2009) Wednesday is indigo blue: discovering the brain of synaesthesia. MIT Press, 2009.
[There are a few interesting pages in this book about personification]



125 comments:

Anonymous said...

I'm relieved to see that someone has pointed out that this girl has ordinal-linguistic personification synesthesia. I have OLP synesthesia to a certain extent, and when I saw this episode of Oprah, I thought it was terrible that everyone labeled her schizophrenic and never considered that she could be a synesthete.

Lili Marlene said...

Thanks for your supportive comment. I find it disturbing that the obvious possibility of OLP/synesthessia in Jani's case has only been raised by members of the public commenting on the story. It looks to me as though the parents and the psychiatrists are deliberately trying to avoid the subject. This makes me suspect that they don't want this possibility considered because if they do admit Jani has one or more types of synesthesia then most aspects of her "psychotic" symptoms could be explained, leaving insufficient unexplained symptoms to support the diagnosis that they have already given her, and that would make them look like incompetent doctors.

I also have OLP. In my mind numbers and letters have genders ages and personalities (and colours), but I have always known this isn't a reflection of reality. I'm sure these types of synaesthesia date back to my early childhood, and were more vivid then. My OLP does not work in exactly the same way as the hallucinations of Jani's as described in the media stories. My OLP is like "knowing" the attributes of a person - I know that my brother-in-law has red hair, I know that my favourite cousin is a whimsical young man, I "know" that the letter R is magenta in colour and is an old lady. But I'm sure there is an explanation beside schizophrenia for why Jani's OLP, as described, appears to be much more "live" and "interactive" than the way OLP is normally described. I also suspect that Jani experiences visuo-spatial synesthesia and possibly tactile synesthesia.

Jani's case raises the question of how often synesthetes (child or adult) have been or are being misdiagnosed with schizophrenia. If us synaesthetes don't voice our objection to what is going on now with Jani, we can expect a whole lot of synasthetes to be dragged into the net of schizophrenia misdiagnosis in the future, because this high-profile case is redefining the popular understanding of schizophrenia symptoms to include experiences of synesthesia.

Adelaide Dupont said...

Isn't it possible that the sensory parts of the brain could be super-connected or have many more neurons there than would be normally the case, and then be worse affected by the natural pruning?

The key, as I have seen and read, is "cross-talk".

What was the organisation in regard to early psychosis whose expertise/knowledge you used?

(I've suspected my own angular gyrus as I have a particularly active inner monologue. My booba/kiki identification is just the other way around. I think the soft shape is kiki and the hard shape booba).

Lili Marlene said...

Adelaide asked:

"Isn't it possible that the sensory parts of the brain could be super-connected or have many more neurons there than would be normally the case, and then be worse affected by the natural pruning?"

That's a good question. There is in fact some scientific evidence that grapheme colour synesthetes have structurally super-connected brains, but if this caused any vulnerability to developing schizophrenia after the natural pruning process, there would be an association between synesthesia and schizophrenia, but I believe this is not the case. And in any case, if the pruning reversed the structural hyper-connectedness of synesthesia then synesthesia would not persist into adulthood. It would vanish after the pruning stage. It is probably true that synesthesia fades somewhat with age, but there is still a sizeable proportion of the population who have syn throughout the adult years. So it seems unliklely that syn is a risk factor for schizophrenia.

"I think the soft shape is kiki and the hard shape booba."

You are an original thinker! Maybe you picked the unconventional choice because you are thinking in terms of hardness versus softeness or fluffiness, rather than the conventional way of framing the question in terms of soft versus jagged or pointy.

Anonymous said...

You're commenting on others and providing a diagnosis when you're only self-diagnosed.

Good grief. What arrogance.

Lili Marlene said...

With regard to synaesthesia, I'm not "self-diagnosed". The idea of "diagnosis" is absurd with regard to synaesthesia, as synesthesia is not considered to be any type of illness or disorder, so the concept of diagnosis does not apply. Being identified as a synaesthete does not bring with it any "treatment" or "cure" or disability entitlements, as synesthesia is considered to be neither of these things.

This does not mean that true synaesthetes cannot be or are not identified. There is a battery of tests of synaesthesia, which anyone can do for free over the internet. It is called The Synesthesia Battery, and it can be found here:
http://www.synesthete.org/
This battery was created by a team of leading university synaesthesia researchers, and the battery has been the subject of a 2007 scientific journal paper. I don't think it identifies OLP, but it can give a definite answer to whether a person has grapheme-colour synaesthesia. I have done the grapheme-colour syn parts of the battery, and I got scores that very definitely confirmed that I at least have this type of syneasthesia, and it is a type of synaesthesia that tends to co-occur with grapheme-colour synaesthesia, according to the professionally-written Wikipedia article on OLP, so there is every reason to believe that I, a confirmed grgapheme-colour synaesthete, am not lying or deluded about having OLP. There is nothing particularly subtle or difficult about identifying OLP - either you have associated a set very specific personal human-like characteristics with individual letters of the alphabet and/or numbers for as long as you can remember, and those associations have never changed, or you don't. Is there anything difficult to understand about that?

So here's a challenge my friend. If you think a reasonable, intelligent person who does not really have synaesthesia could do The Synesthesia Battery and end up sincerely incorrectly believing that they do have synaesthesia, why don't you complete the battery yourself, and do your best to get a false-positive score. Best 'o luck!

Lili Marlene said...

Oh, and no attempts at tricks or cheats, you must do the test in good faith!

Lili Marlene said...

A correction - I meant to write in my 2nd last comment that Grapheme-Colour Synaesthesia tends to co-occur with Ordinal Linguistic Personification (OLP). Check this fact for yourself here: http://en.wikipedia.org/wiki/Ordinal_linguistic_personification

Anonymous said...

Based off things I've read so far, she could both be synesthetic and schizophrenic. I wouldn't be surprised if that were the case.

Lili Marlene said...

Anon, my personal view is that Jani is definitely a synaesthete, and I doubt that synaesthesia and schizophrenia would be found together, for 2 reasons. Firstly, the underlying causes of both condions seem to be the opposite - synaesthesia is caused by a brain that has more than the usual amount of connections in the white matter, while schizophrenia is thought to be the result of too much neural pruning during the normal phase of pruning during adolescence (schizophrenia is an adult/teen-oset disease), resulting in a brain that is shrunken. I also recall a few years ago a synaesthesia researcher discussing a study that she did which apparently found NO association between synaesthesia and mental illness, which would include schizophrenia.

And you need to put the idea of Jani having achizophrenia into its proper persepctive. For a start, she is the wrong age. As I already stated, schizoprenia is considered a disease that has an onset in late adolescence or early adulthood. The very idea that kids can have it is apparently not accepted by a large part of the medical profession. The diagnosis of "Childhood-onset schizophrenia" is NOT a recognized diagnostic category in the DSM. Schizophrenia is a RARE disease, with cases with an onset in childhood considered to be EXCEEDINGLY RARE (or suspect). Considering this, one would need overwhelming evidence showing that schizoprenia is the ONLY explanation for a child's behaviour to even consider the extremely unlikely diagnosis of schizophrenia. This is most certainly NOT what is found in Jani's case. If you look trawl carefully through the mountain of stuff that Jani's dad has written, I think you will come to the conclusion that Jani's parents have decided on that diagnosis themselves, and have doctor-shopped till they got what they wanted.

Did you know that Jani was REJECTED from a scientific study of childhood schizophrenia? She didn't fit the criteria for study subjects, which were carefully screened to exclude many kids who had been incorrectly diagnaosed.

Lili Marlene said...

What kind of Christmas will Jani be having?

Anonymous said...

"Did you know that Jani was REJECTED from a scientific study of childhood schizophrenia? She didn't fit the criteria for study subjects, which were carefully screened to exclude many kids who had been incorrectly diagnaosed."


She was rejected from the study because she supposedly had, at one point, a lack of oxygen to the brain - either in the womb or after birth. This is according to Michael Schofield's blog. She therefore did not meet the criteria for the study. I have no idea how they know this. Just wanted to throw that out there. I do agree that Jani's parents are set on SZ diagnosis. They do not have an open mind to any other possible mental condition.

Lili Marlene said...

I was aware of that explanation, Anon. Jani's parents can say anything about this matter, and I don't think they need fear being contradicted by doctors, because doctors have a professional obligation to maintain patient confidentiality. So I'm highly sceptical about this explanation (which surely wouldn't be verifiable). Brain damage as the result of a lack of oxygen doesn't seem terribly compatible with the synaesthesia that Jani clearly has - synaesthesia is caused by an unusually connected brain which seems to be the opposite of brain damage, which would surely leave a less connected brain with bits missing. It all smells fishy to me.

Lili Marlene said...

And to state the obvious, brain damage from a lack of oxygen seems to be VERY inconsistent with the very high IQ that Jani's parents themselves report that she has. If Jani has an IQ of 146 following brain damage, she must have had a pretty amazing brain before the brain damage. Please keep in mind how rare and IQ of 146 is supposed to be. THe vast majority of people supposedly have an IQ of 100.

Anonymous said...

Child-onset schizophrenia actually is recognized in the DMV as a disorder. Whether or not Jani Schofield has it is an entirely other matter. I'm not familiar with synesthetes, but I do know that there are significant similarities with childhood schizophrenia and autism, and for a long time many professionals lumped them into the same category. And she does show many of the symptoms that children with schizophrenia usually have, like antisocial behaviors and strange movements in the hands, as well as abrupt speech patterns.

Lili Marlene said...

"Child-onset schizophrenia actually is recognized in the DMV as a disorder."

And the "DMV" is what? Last time I checked there was no child-onset schizophrenia in the DSM, and I have been advised by professionals that the very existence of that diagnosis is questionable in contemporary times.

"...I do know that there are significant similarities with childhood schizophrenia and autism, and for a long time many professionals lumped them into the same category. And she does show many of the symptoms that children with schizophrenia usually have, like antisocial behaviors and strange movements in the hands, as well as abrupt speech patterns."

In the not-too-distant past adult and child autistics were misdiagnosed as schizophrenic in large numbers, and that is why outdated descriptions of the obsolete diagnosis of childhood schizophrenia would look similar to contemporary descriptions of child autism.

Many different famous people who have been identified as autistic in recent years have been given questionable diagnoses of schizophrenia in the past. Some examples are the NZ writer Janet Frame, Opal Whiteley, English artist Louis Wain, Syd Barrett from Pink Floyd (amateur diagnosis of schizophrenia by another band member) and Swiss writer Robert Walser. It appears that the American actor Dan Aykroyd CM was given a childhood diagnosis that included Tourette's, autism and childhood schizophrenia. Amazing how successful his life has been despite such heavy-sounding labels early in life.

Anonymous said...

while i do agree with some of your points, its important to point out you aren't including Jani's admission to her therapist on "Born Schizophrenic" that one of her hallucinations (400) tells her to hit people. if you listen to her talking about her hallucinations throughout the show, they speak to her and she interacts with them and they seem to egg her on toward violent/inappropriate behaviors. not to mention that video of her as an infant- the way her eyes were tracking was very bizarre. While i do agree there may be OLP synesthesia involved, there is clearly a psychotic disorder as well...

Lili Marlene said...

Anon wrote:
"if you listen to her talking about her hallucinations throughout the show, they speak to her and she interacts with them and they seem to egg her on toward violent/inappropriate behaviors."

There are just so many explanations that I could think of for this that are just as likely if not more likely than a very rare mental illness. Have her parents influenced her to get her to describe herself in any particualr way? A young child is powerless. Anyone who has read anything much about neurological disorders knows that people often confabulate to explain the weird effects of neurological damage or disease. When a young child is put under pressure (by being sent to see a "therapist") the child has to come up with some story to explain their behaviour. If you were a young child who has a very active inner world because of a combination of synaesthesia and the mind-bending, soul-destroying boredom from being an intellectually gifted child who has no access to a suitable education, combined with a bit of autism, and maybe also some Tourette's making you act on anti-social impulses, (these conditions are sometimes found together), how do you think that you, as a young child who knows nothing about the names or medical descriptions of these conditions, would explain your behaviour and your thoughts?

And there is also the very obvious possiblity that Jani cites imaginary friends as the agent of naughty behaviour because she thinks this will be a way to evade responsibility for her own behaviour. She is, after all, just a young child, with parents who appear to have never developed much in the way of confidence and skill in parenting, and by their own account, were given little support in parenting from family, educators or the community from the time Jani, their first child, was born. I believe the whole family has been let down very badly by their community.

As I've already written, child psychologists have found in their research that it is a perfectly healthy and normal thing for young children to have imaginary friends, in fact, it seems to be associated with a well-developed social imagination. Imaginary friends of childhood are a completely different phenomenon to psychotic delusions of the adult schizophrenic. Any psychiatrist or psychologist worth a cup of spit could tell the difference.

Anon wrote:
"not to mention that video of her as an infant- the way her eyes were tracking was very bizarre."

As I've written before, all newborn babies appear to look at things that aren't there. This is because their eyes are not mature enough to physically focus on anything much at all, so they just look about. It often looks like they are following things with their eyes. Parents who read books about baby care know this stuff. I've had babies myself (who are not psychotic), and I've seen countless newborns in maternity hospitals, playgroups, ICUs and in life in general, and there is absolutely nothing out of the ordinary about the appearance of Jani as a newborn. Sensationalist daytime TV shows often make stories out of nothing by using psychological framing to make very ordinary child behaviour look weird or sinister. Show video of normal child behaviour, add some foreboding music and a voiceover saying sensationalist stuff, and any kid can be made to look like a psychotic freak. Trash news TV shows routinely do this in stories about kids labelled with autism or ADHD.

Lili Marlene said...

"Anon wrote:
"if you listen to her talking about her hallucinations throughout the show, they speak to her and she interacts with them and they seem to egg her on toward violent/inappropriate behaviors."

Do schizophrenics who "hear voices" interact with "the voices"? I don't think they do, they either ignore them or they obey them, but I don't think they interact with them. I'm certainly no expert on psychosis, but I suspect that this might be an important hint that Jani's experience is imagination or confabulation and not psychosis.

Anonymous said...

The side chair diagnosis I read here do a great injustice to the parents and January. You pass judgment without the facts instead of expressing your compassion for all involved. Your snap judgments without ALL the facts represent the ugly side of humanity. Go stand in the corner.

Lili Marlene said...

I haven't "diagnosed" anything. Synaesthesia is not a disorder or disease, and hence is not a "diagnosis". Haven't I explained this all before in these comments? Yes, I have in the 6th comment on this post. If anything I have made an undiangosis - I have pointed out how very unlikey it is that any child has childhood schizophrenia, an obsolete and not officially recognized diagnosis that is a souvenir of the bad old days when autistic children and adults were routinely diagnosed as schizophrenics, a diagnosis which it appears the majority of the psychiatric professioin does not believe exists, and which is an extremely rare disease if it exists at all. I have also pointed oout how vvery unlikely it is that Jani has a psychotic mental illness, when her so-called hallucinations have not even decreased to any degree after she has been treated with huge doses of a number of different types of anti-psychotic drugs, of the type that are given as treatment for adult schizophrenics. I have also pointed out how unlikely it is that Jani is a genuine case of child-onset schizophrenia after she was rejected as a subject from a medical study of children who were carefully and stringently screened as genuine cases of childhood psychotic illness.

I'd love to know how you explain the fact that a barrage of anti-psychotic drugs has made no dent on Jani's "symptoms". The proof of the pudding is in the eating, and that poor child has been force-fed enough rotten pudding already!

Anonymous said...

Synethesia does not explain her outbursts of violence or suicidal behavior.

Lili Marlene said...

I can see you've not paid much attention to my article - you haven't even cared or managed to spell synesthesia/synaesthesia properly.

As far as I know Jani's parents are the only source of the assertions that Jani has behaved in ways that are seriously problematic. In all of the many pieces of video of Jani that I have seen she looks like nothing worse than a carnky little girl. If you can give a source of info on this matter besides her parents or a second-hand report from her parents on this point I'd be interested to know.

Lili Marlene said...

typo - "cranky".

Anonymous said...

My husband works with clients who have mental health illnessess including psychosis, multiple person disorder, schziophrenia etc. These clients do infact interact with the "other" world that they are apart of; they do not simply ignore or "obey." They will have full conversations with the "other" world. Secondly, you said that everyone is just taking the word of Jani's parents. Well it seems she has gone to many hospitals, recognizably UCLA and social work agencies, so I am sure they have some research and credibility behind their diagnosis, and arent simply labeling it themselves. And currently Jani is doing well with the new meds she is on. I am not sure what your medical background is, or how you came up with the diagnosis of Synesthesia without actually seeing the child. I know you said that it is very rare for a child to be diagnosed with schizophrenia, then perhaps she is one of those rare cases, considering there is a history of schziophrenia genetically speaking on both sides of her parents blood line.

Lili Marlene said...

"My husband works with clients who have mental health illnessess including psychosis, multiple person disorder, schziophrenia etc. These clients do infact interact with the "other" world that they are apart of; they do not simply ignore or "obey." They will have full conversations with the "other" world."

MPD isn't recognized as a genuine disorder in many parts of the world, so the practices of American psychiatry have limited credibility.

"Secondly, you said that everyone is just taking the word of Jani's parents. Well it seems she has gone to many hospitals, recognizably UCLA and social work agencies, so I am sure they have some research and credibility behind their diagnosis, and arent simply labeling it themselves."

I acknowledge that Jani was formally and professionally diagnosed with childhood-onset schizophrenia. I've never disputed that. I dispute that it is the correct explanation. When I was trawling through the huge archive of blog posts by Jani's father I came across a piece indicating the parents had been "doctor-shopping". I also recall reading that a number of doctors considered autism. I hope you understand that if any of the doctors who have seen Jani disagrees with her diagnosis of schizophrenia, he/she is not allowed to publicly state this opinion because of the ethical restraints of patient confidentiality.

In Australia we have huge regional differences in diagnosis rates of ADHD. It is recognized that this cannot be due to genuine differences in rates of ADHD, but is the result of parents seeking this diagnosis and being able to access the services of just a few doctors who readily diagnose ADHD. This is "doctor-shopping". It is a common practice.

"And currently Jani is doing well with the new meds she is on."

Glad to read it, but I want to know the source of this news. The most recent thing I've seen about Jani indicates that her heavy medication regime has had no impact on her "halluciations", which are I'm sure synaesthesia, which probably wouldn't be stopped by anti-psychotic drugs and could even be boosted by them.

"I am not sure what your medical background is, or how you came up with the diagnosis of Synesthesia without actually seeing the child."

Synaesthesia isn't a medical condition and thus does not require a medico to "diagnose" it. You aren't sure why I believe that Jani has synaesthesia? Try reading this article! I do know a thing or two about synaesthesia, having many different types of synaesthesia myself. In some respects I know more about it than any non-synaesthete doctor or researcher.

"I know you said that it is very rare for a child to be diagnosed with schizophrenia, then perhaps she is one of those rare cases, considering there is a history of schziophrenia genetically speaking on both sides of her parents blood line."

Once again, I'd love to know the source of this info as I'd like to check it myself. Not so long ago autistic adults were frequently misdiagnosed with schizophrenia and other mental illnesses. There have even been tragic cases of harmless synaesthesia being misdiagnosed as schizophrenia. Autism and synaesthesia are much more genetically determined than schizophrenia. I wouldn't be surprised if Jani has autism/Asperger syndrome or synaesthesia in her family history. Don't you think it is quite a coincidence that a child who displays a spectacular case of personifying concepts that are learned in a set sequence (a type of synaesthesia, OLP) has been given a first name, presumably by one of her parents, that is a concept that is learned in a set sequence? How could an unusual interest in such items be passed down in a family? Synaesthesia, a highly heritable condition. The concept of the months of the year is very often involved in synaesthesia. My guess is that this is how January Schofield got her name.

Lili Marlene said...

And thanks for your comment. Who needs sleep?

sue said...

Lili Marlene: "Synesthesia" can't be diagnosed, as you have said, ok but it can be detected. There have been experiments under clinical settings done which have actually checked whether people do have this condition or not. Also the MRI scans of people's brains with this condition have been shown to be different from others. Yes, there are actual clinical, and neurological tests to detect synestesia. On the other hand, the tests on the internet are strickly subjective. They ask - you answer. There are no scientific personnel involved, there is nothing objective about it. Any one reputable would say that online tests are only a starting point, and if a person wants to be certain they need to seek a professional. Also it seems to me that you use the info about Jani from the internet when it supports your statements, and when the info contradicts, you say you haven't seen it. Such as when someone reported that Jani was doing better on new medication - you didn't see this on any internet sites. It's been there, the newest updates.
Schizophrenia is a medical diagnosis made by doctors with medical degrees. They have a standard set of criteria in the DSMIV, which enables them to make a diagnosis. I know that there have been wrong diagnoses of schizophrenia, but this happens with physical illnesses also, often. Jani's dad has said that she was tested for both autism and asperger's and this was ruled out. Millions upon millions of dollars are spent in research in diagnosis and treatment of schizophrenia. Hundreds of thousands of scientific journal articles and scholarly books in many different professions have been published about schizophrenia. Schizophrenia has been observed in every culture in the world, by scientific study.It is a devestating illness and it is just that: an illness. A lay person has no more right to diagnose or to argue with a schizophrenic diagnosis, than with diabetes, asthma, lupus, etc. If you were a diabetic, your diagnosing someone also as a diabetic (and someone you had never met, but only saw through the internet) would be nonsense. But yet this is what you are doing with Jani.
Jani's symptoms encompass much more than seeing numbers with colors, or whatever. She also sees other beings, who attack her and she has been suicidal and violent. The suicidal issue is obviously the most important. I doubt that synesthesia leads to suicidal ideations. Obviously when Jani tried to jump out of a second story window, it was horrifying to her parents.
It is also of note that synesthesia does not interfere with learning, and as intelligent as Jani is she is not educated. Her illness is interfering with her ability to be taught to read and write.
I don't know if Jani has schizophrenia or not. Neither do you. Obviously you are entitled to your opinion. If you have synethesia, then I believe you say you have it. If Jani's parents and the dozens of psychiatric and other mental health professionals that have been involved with her over several years, diagnose her with schizophrenia, then it would seem that this is enough to go on, just like you would like to be believed about your synesthesia. Jani has been through mulitple hospitalzations, and in different types of therapies, plus being evaluated by the school, so it would seem that there are a lot of very qualified people all agreeing with the diagnosis. People have have tested her, examined her, and treated her. You've done none of this, nor are you qualified to do so. Again you can express any opinion you want, but it is only only an opinion and you have nothing substantial to back it up with. For the few studies you cite, there are hundreds if not thousands more that would have a opposite position. If you are so concerned about Jani, why don't you go on their Facebook page or send Michael or Susan an email and explain your position. At least you have brought synesthsia to their attention.

sue said...

I'd just like to add that if you would like me to send you citations for journal articles that back up anything I have asserted I will be happy to do so. I am an academic libarian at a Big Ten university - so no problem there.
Schizophrenia has definitely been shows to be genetic and hereditary. By the way, MPD is an accepted diagnosis, it is now called Dissociative Disorder. The source is the DSMIV-TR, the DSMV is soon to come out. I will look for academic/scientific info on childhood schizophrenia and send it to you, if you'd like.
There is such a occurance as treatment resistance, in any illness or condition. Doctors have to try many medications or combinations to find something that works. Not that unusual for any illness, including mental illness.
Finally, the misdiagnosis of schizophrenia for autism hasn't been prominent since about the early 1970s. Medicine has gained new knowledge and moved on. Again, need citations? Just ask. And they won't be from Wikipedia, either.

Lili Marlene said...

"On the other hand, the tests on the internet are strickly subjective. They ask - you answer. There are no scientific personnel involved, there is nothing objective about it. Any one reputable would say that online tests are only a starting point, and if a person wants to be certain they need to seek a professional."

As far as i know there is only one synaesthesia test available on the internet, and it is an actual test, not a questionnaire, and one can only do well in it if one has colour-grapheme synaesthesia, so there is absolutely nothing subjective about it at all. It is called The Synesthesia Battery. It was created by university researchers, and people's results from the test can be shared with other synaesthesia researchers through the internet, if the person who did the test gives their consent. I think you have fallen into the very common trap of confusing tests with questionnaires. They are two completely different things, and you are right that questionaire answers can be very subjective and are not a solid form of research.

Lili Marlene said...

"Also it seems to me that you use the info about Jani from the internet when it supports your statements, and when the info contradicts, you say you haven't seen it. Such as when someone reported that Jani was doing better on new medication - you didn't see this on any internet sites. It's been there, the newest updates."

It has been over a year since I did any substantial research on Jani. I'm not getting paid to do this blogging, and I have very limited spare time. When I researched my writings about Jani I went to great lengths to collect and read all of the media reports on Jani, as you can see in my blog post titled "Troubled young child as celebrity - it could only happen in America - a reference list about Jani Schofield" published April 24th 2010.

Would you like to give me some more recent links to look at? Press articles are probably more credible than untraceable internet articles.

Lili Marlene said...

"Jani's dad has said that she was tested for both autism and asperger's and this was ruled out."

To put it in plain language, I don't trust what her parents say or write. As I explained in a recent comment, there could be a dozen doctors out there who have seen Jani, and concluded that she has autism or synaesthesia or whatever and not childhood-onset schizophrenia, but they would be legally gagged from making any public statement about any disagreement that they might have with her current diagnosis due to the ethical rules of patient confidentiality. A parent only has to find one doctor who will make a diagnosis that they seek, and that diagnosis sticks, because it is only the child's parents who automatically have the legal right to disclose info about a child's medical diagnosis. I'm not saying Jani's folks definitely did this, I'm just saying it is possible and this type of thing happens all the time.

Lili Marlene said...

"Schizophrenia has been observed in every culture in the world, by scientific study.It is a devestating illness and it is just that: an illness. A lay person has no more right to diagnose or to argue with a schizophrenic diagnosis, than with diabetes, asthma, lupus, etc. If you were a diabetic, your diagnosing someone also as a diabetic (and someone you had never met, but only saw through the internet) would be nonsense. But yet this is what you are doing with Jani."

I never disputed that schizophrenia is a real illness blah, blah blah, so your arguments are irrelevant. I have merely stated the plain fact that the diagnosis of CHILD-ONSET schizophrenia is in itself a controversial concept. Schizophrenia typically has an onset in adolescence and the 20s. I have been given this advice by a service run by youth mental health professionals, who know plenty about mental illness. If you delve into what research literature that there was on the subject of autism from the 1960s and 1970s it will become very clear to you that the terms "childhood schizophrenia" and "autism" were used interchangeably, and clinicans these days would I'm sure agree that the first label was a very inappropriate one. Back in the old days doctors seriously thought that autistic kids would turn into schizophrenic adults, which is pure nonsense, but back then psychiatry was even less science-based than it is today.

Lili Marlene said...

"Jani's symptoms encompass much more than seeing numbers with colors, or whatever. She also sees other beings, who attack her and she has been suicidal and violent. The suicidal issue is obviously the most important. I doubt that synesthesia leads to suicidal ideations. Obviously when Jani tried to jump out of a second story window, it was horrifying to her parents."

As far as I recall, we only have Jani's parents' word that any of this stuff happened, and as I wrote already, I don't trust what they say or write. That is my position. If you don't like it that's too bad.

But supposing that Jani did want to jump out of a window - I could completely explain that by the apparent fact that she has an IQ of 146 and has never been given any type of education. If you had any knowledge at all of the issues and needs of highly and profoundly intellectually gifted children, you would understand that the educational neglect of these kids often leads to serious depression, mental health issues and behavioural issues. When you stick a powerful and large wild animal in a tiny cage for years it will inevitably go mad. It's the same for gifted kids left to languish without access to an appropriate educatioin.

Lili Marlene said...

"It is also of note that synesthesia does not interfere with learning, and as intelligent as Jani is she is not educated. Her illness is interfering with her ability to be taught to read and write."

Just today I was chatting with another Mum while picking kids up from school. Like us, she travels many miles from home to take her kids to a decent school, after having bad experiences with their local school. She had been told her child would not sit still, would not learn, would not pay attention and the child was given an amateur diagnosis of ADHD by the teacher. Miraculously, the child's mental disorder was instantly cured by being shifted to a school that isn't a bunch of crap. I always need to be convinced that there isn't anything wrong with the adults (parents, school, teachers, child care) before I will believe that there is something wrong with the kid.

Lili Marlene said...

"If Jani's parents and the dozens of psychiatric and other mental health professionals that have been involved with her over several years, diagnose her with schizophrenia, then it would seem that this is enough to go on, just like you would like to be believed about your synesthesia. Jani has been through mulitple hospitalzations, and in different types of therapies, plus being evaluated by the school, so it would seem that there are a lot of very qualified people all agreeing with the diagnosis. People have have tested her, examined her, and treated her."

If you can show me any evidence that more than one team or more than one independent clinician has independently diagnosed Jani with child-onset schizophrenia, I'd be very interested to read that. I recall that she was diagnosed at UCLA. I know that doctors are likely to be pretty reluctant to openly express doubt or dispute another doctor's diagnosis.

People have tested her? I've never heard of any objective test for schizophrenia. Let me know more about this test!

Lili Marlene said...

"For the few studies you cite, there are hundreds if not thousands more that would have a opposite position."

Where? I've just done a PubMed search on the phrase "childhood-onset schizophrenia", and only retrieved 223 papers, most of them quite old, and many of them authored by a very limited group of researchers. In contrast a Pub Med search of the term "synesthesia or synaesthesia" retrieves 313 papers. When you consider that a lot of synaesthesia research would not even by indexed by PubMed as it is in the psychological, arts or humanities literature, it is clear that, based on a search of published journal papers, synaesthesia is a more scientifically established concept than the concept of "childhood-onset schizophrenia" also known as "COS".

Lili Marlene said...

"If you are so concerned about Jani, why don't you go on their Facebook page or send Michael or Susan an email and explain your position. At least you have brought synesthsia to their attention."

If they haven't already read or heard about my writing on Jani I'd be very surprised. I have no interest in mixing with the unwashed masses on FB and getting involved in some squalid Facebook brawl.

Lili Marlene said...

"I'd just like to add that if you would like me to send you citations for journal articles that back up anything I have asserted I will be happy to do so. I am an academic libarian at a Big Ten university - so no problem there."

Duelling academic librarians!

Lili Marlene said...

"Schizophrenia has definitely been shows to be genetic and hereditary."

But not as much as autism or synaesthesia I'll bet. Autism apparently has very high concordance rates for identical twins, and i know first-hand how synaesthesia gets around a family tree.

Lili Marlene said...

"By the way, MPD is an accepted diagnosis, it is now called Dissociative Disorder. The source is the DSMIV-TR, the DSMV is soon to come out. I will look for academic/scientific info on childhood schizophrenia and send it to you, if you'd like.
There is such a occurance as treatment resistance, in any illness or condition. Doctors have to try many medications or combinations to find something that works."

I'm starting to wonder if you'd believe anything that a doctor told you. Have you taken a look at the Wikipedia page about DID? As much reason for doubt about the concept as anyone could find.

Lili Marlene said...

"Finally, the misdiagnosis of schizophrenia for autism hasn't been prominent since about the early 1970s."

It appears to have happened a lot in the decades up to the 1970s. How old would Jani's grandparents have been then?

Lili Marlene said...

Here's something to ponder for any of my readers who believe that the diagnosis of schizophrenia is based on many decades of rock-solid scientific research. It is an excerpt from a book review in New Scientist magazine (issue 2842 Dec 10th 2011 p.51) by Allen Frances MD, an Emeritus Professor of Psychiatry and was the chair of the task force in charge of DSM 4, an edition of the "bible" of American psychiatry. He writes that "The label schizophrenia is still with us, but hopefully not for too much longer. It is a tired, old concept tht has outlived much of its usefulness. There is not one schizophrenia: more likely a hundred causes will gradually be teased out as research goes beyond description and discovers fundamental explanations." Doesn't inspire much confidence.

Anonymous said...

well i found this an interesting hypothesis. Certainly I don't think Jani appears to be schizophrenic from what I have seen in videos of her. (I am schizophrenic, know many schizophrenics, and also have a MSc where I wrote my dissertation on schizophrenia). The "symptoms" described look like a parody of schizophrenia as understood by an uninformed lay person. The synesthesia hypothesis hadn't occurred to me but it makes an interesting addition.

Oh and MPD is definitely NOT a generally respected diagnosis, and the evidence for schizophrenia as a genetic disorder is limited. Yes a number of genes have been identified as being involved but it's far from the clear-cut case one of the commenters makes out.

I also think it is suspicious that she was rejected from the NIMH study - in fact I have just been reading about that and wondered about whether she had participated in the study. Doctor shopping: plausible.

Lili Marlene said...

Thanks for your comment!

Yes, it is true that researchers have linked some genes to schizophrenia, and some families have more than one case, but this could still be consistent with virus infection or maternal infection in utero as a cause of the condition. Apparently this is a theory that has much credibility. I guess with all of the first-hand knowledge that you have that you have formed your own opinion about the cause? I just wish that the researchers would spend less time looking for a cause, which could well be something that can't be prevented, and instead look for better treatments than the drugs that are currently used.

Apparently that book that Jani's father is working on has a date of publication set, and a cover. Any publisher that would go near this project is surely an ethics-free zone.

Anonymous said...

From Interpretation of Schizophrenia by Psychiatrist Dr. Silvano Arieti: "Even homes broken by death, divorce or desertion may be less destructive than homes where both parents are alive, live together, and always undermine the child's conception of himself."

Lili Marlene said...

I don't know anything about the book or the doctor, but that quote sounds like words of wisdom to me. Thanks Anon.

Anonymous said...

If you want to read more, you can search: Wikipedia "Interpretation of schizophrenia" by Dr. Silvano Arieti. Thank you for your comment Lili Marlene.

Anonymous said...

Everyone who says that jani, does NOT have schizophrenia is ignorant she has it and it isn't any of this other bullshit that u people are spinning I've met jani and I can tell u that from experience

Lili Marlene said...

Unfortunately, as you are anonymous, and even if you gave your real name, I probably couldn't verify your identity, we can't tell if you comment is worth anything at all. We can't tell if you have really met Jani, as we don't have a clue who you are, and we also can't tell if you have the qualifications or the knowledge to identify any mental illness or any other type of condition of the mind.

The only way to make any type of contribution to an issue or debate as an anonymous person is to make an argument, preferably citing evidence, other sources, etc. That is what I try to do in my blog. Delivering an argument is different to writing an insult or a bald assertion or making unverifiable claims about first-hand knowledge or experience. Maybe you did meet Jani. We have no way of checking or knowing.

mary said...

I just found this blog, thank you! I searched for an update on Jani this morning. I have read and re-read Michael Schoffield's blog. While I can relate to some of what he says, I was struck by what is, in my opinion, appalling self absorption on the part of the author. I raised a child very ill with intractable epilepsy that also turned out to be genetic. It seemed that for years I pored over scientific journals, the internet, and medical school libraries searching for anything that I thought might help my daughter. Medications did not help, and by the time she was 6 she had taken every med available at the time. I was frustrated often, sad sometimes, but never ever angry. People often misunderstood her condition. People often offerred advice. I never felt anger towards them, as it seemed abundantly clear to me that these people either did not know or did not mean what they were saying. The reality for my now grown daughter is that each new seizure takes away more of her short term memory,her weight fluctuates by 60 pounds, up or down, with med changes, and unless technology takes a staggering leap, she will die young. Yet she is an amazing woman. Like many sick children, I have never heard her complain about her illness or her limitations. She is sunshine and joy in a way that baffles me. If she were to die tomorrow, I will be blessed for the years that I knew her. I realize that my experience is different than Jani's family. But my opinion remains the same; Michael Schoffield is appallingly self absorbed, often completely closed to solutions to the family's financial/insurance crisis, and doggedly determined to be angry with the world for his daughter's condition. I do not understqand this.

While reading these posts, I remembered that my older daughter (not the one with epilepsy)used to name her fingers and toes, and always had favorite numbers that had personalities! I never knew that there was a name for such a thing. She was homeschooled, so I never saw fit to discourage her. Interestingly, she could not read until she was 11. At 11, it was like a switch flipped in her brain, and within 4 months she went from picture books to complex adult books. In highschool she discovered physics. By college, her love for all things theoretical in science and math truly bloomed. She ended up graduating college Summa Cum Laude, with a major in Physics, and minors in Computer Science and Math. As an English major, I find this utterly amazing. As I recall, her IQ is 138. Before reading this blog I had no idea that was exceptional.

I wanted to thank all of you who contribute to this blog, and especially the author. I am going to do some research on this condition, and cannot wait to tell my daughter. In the meantime, I will pray for Jani. Although my daughter was very sick, I still expected her to learn self control, and good manners in deference to those around her. Raising my children took every minute of every day, as well as every centimeter of brain space that I had. Frustration can turn to anger in a heartbeat. It was crucial, especially as a mother of a special needs child, to use my brain to continually find ways to engaqe my children without anger; regardless of the situation. It can be done,if only we challenge ourselves to raise them without anger, frustration, or violence.

Lili Marlene said...

Many thanks for your interesting comment, Mary.

Yes, an IQ over 130 is definitly in the gifted range.

Personification of fingers and toes is something new to me, but I don't doubt that it can be a type of personification synaesthesia, as new types of syn are being described all the time by researchers. It is especially interesting considering the special role fingers play in number-sense in the brain.

Best wishes,

Lili.

Lili Marlene said...

Many thanks for your interesting comment, Mary.

Yes, an IQ over 130 is definitly in the gifted range.

Personification of fingers and toes is something new to me, but I don't doubt that it can be a type of personification synaesthesia, as new types of syn are being described all the time by researchers. It is especially interesting considering the special role fingers play in number-sense in the brain.

Best wishes,

Lili.

Anonymous said...

What I don't understand is when will people realize that these illnesses are nothing but demonic influences. But that because no knowledge of getting the girl and the rest of the kids delivered from evil. Satan will get to your kids to get to the parents. These families telltale needs prayer and find someone to help the miss get delivered.

Lili Marlene said...

You don't understand that your theory is complete nonsense to anyone who does not believe in supernatural things? I can't see what is so hard to grasp about that.

Anonymous said...

What wrong is ppl with the illnesses are living like that and don't have to. Deliverance is there and you ppl don't even know how to go about getting delivered and having a prosperous life. Jesus lay your burdens on me and I will give you rest. It's not a theory but only ppl who livng in a lie would say that. The same thing a boy was going through in the bible throwing his self in a fire and harming his self Jesus came and delivered him from the demonic force. So now would be a time to consider. Cause ppl lose their lives way too soon.

Lili Marlene said...

You might as well be writing in Japanese, your ideas make no sense to me.

Anonymous said...

So sad u will die not knowing so greater salvation

Anonymous said...

And the theory you have lol no need to entertain the ppl that God told us to continue praying for.

Lili Marlene said...

I sincerely hope that your irrationality is only the result of an unwise and irresponsible choice of yours. If not, please see a doctor.

Val said...

Lili, this is a great article. Do you feel that perhaps Jani's parents are in some way responsible for Jani's behaviour? The whole thing sounds/looks so fishy and theatrical to me.

Lili Marlene said...

Thanks Val. I think all parents of young children have a great influence on the behaviour of their kids (there might be exceptions or apparent exceptions among the more autistic young kids who seem oblivious to all other people). I agree that there is an element of Jani's behaviour that looks staged. I don't think that her folks have put her up to her repetitive hand flapping, because it is very consistent in the videos of her that I have seen, and it is evidence towards an autistic diagnosis, which her parents appear to not want. I should point out that I have not yet viewed any recent video or TV shows showing Jani, and if it is geoblocked I might never get to view it.

Mary said...

To the author convinced that these illnesses are caused by demons, please let me remind you of history. We used to believe that the world was flat. Those who differred were excommunicated from the Church. Epilepsy is as old as mankind. Yet those with seizures were frequently confined to asylums and/or assumed to be possessed. This was standard treatment until the turn of last century!! With the eventual growth in the field of neurology it was discovered that seizures were nothing more than differentiated brain cells all firing the same impulse at the same time. It seems to me that the human brain, like the universe, is the last frontier. We understand so much more than we used to, and yet in some way the more we comprehend the more we realize there is to learn. I have spent some time immersing myself in the history of religion. To believe that God is going to heal you of all manner of ills while on this earth flies in the face of christian theology. Remember, as victims of original sin we will suffer all manner of human weakness, physical, mental, and spiritual. Christ died on the cross to offer mankind freedom from human sufferring after death, not while living. Surely you remember that Adam and Eve lived without the challenges that their human counterparts have thanks to their lapse in judgement. I am always surprised at the vitriol with which these posters spew damnation. For goodness sake, do your homework before you make such illogical accusations lest someone assumes that you are the one possessed.

Lili Marlene said...

A blog with a neuropsychological theme by an atheist seems an unlikely place to find a theological debate, but that's OK with me.

Isn't Jesus believed to have healed some people during his life? Were his miracles just done to establish his divinity (not that I'm a believer myself, but I did spend many an hour in Anglican churches in my childhood).

Anonymous said...

Lili would you be a member of the Church of Scientology? It seems that you are biased in regards to the mental healtch profession.

It doesn't matter really what this girl's root problem is. She is in a near permanent state of psychosis. She cannot function in reality as we see it.

Lili Marlene said...

It says very clearly in the section about me at this blog that I'm not a Scientologist.

I suggest that you meet or study some adults who have an undisputed diagnosis of schizophrenia, and who are actively psychotic, so that you will understand what the CLINICAL meaning of that word is. As a term in the world of medicine and psychiatry it does not mean merely odd or eccentric or scatty. You think Jani is in a permanent state of psychosis? Then you give me a link to one piece of video, among all of the video of her available, in which she is verbalizing what the psychiatrists call "word salad". There's your challenge.

Anonymous said...

in which she is verbalizing what the psychiatrists call "word salad". There's your challenge.

Word Salad is a symptom of Schizophrenia and not a requirement to be observed to qualify for that diagnosis and is not a definitive when discussing related psychosis or other mental illnesses.

Lili Marlene said...

Jani has been countless times described in the media as a schizophrenic, therefore I'd expect her to display at least one of the distinctive symptoms of schizophrenia (schizophrenia-like complex paranoid delusions, beliefs about thought control, word salad etc). As far as I can tell, nothing that Jani has ever done could only be explained as schizophrenia, so my argument is, considering that schizophrenia is a rare disorder, other more common disorders or conditions are more likely to be what she's got.

Anonymous said...

Hi. I haven not done a whole lot of research but I trust my gut instinct when I watch the videos and read the interviews-- that the Schofields suffer from Munchausen Syndrome (by proxy) and are just using little Jani (and now Bodhi, son) for attention. The ABC interview says that Bodhi has a 50% chance of being schizophrenic, as reported by the parents. I'd like to invite you over to www.GenericIndigo.com-- a forum where we are now discussing the Jani issue and shedding light on the abuse.

Lili Marlene said...

A 50% rate of risk for a sibling of a schizophrenic is probably an exaggeration. It actually isn't a hugely genetic disorder, not nearly as much as autism. That's of course presuming that the sibling does have schizophrenia, which I very much doubt.

Thank you for your invitation to a forum. Sorry, I don't so fora these days. I barely have any spare time just for my blogs.

"....the Schofields suffer from Munchausen Syndrome (by proxy) and are just using little Jani (and now Bodhi, son) for attention."

I think you are way too charitable. The father is close to or has published a book about Jani. At one time the parents were openly soliciting for donations at the Jani's Journey website, and at one time ppl were raising funds for Jani like she was a charity. As far as I know neither parent has a job. I don't think they are doing it for attention! Or to put it another way, I believe the attention they seek is a means to another end ($$$$$). That is my personal opinion. The label of Munchausen's by proxy is a controversial concept, and has been incorrectly applied to parents with tragic consequences, so I'd be wary of applying such a label.

Anonymous said...

I was diagnosed with schizoaffective disorder that is characterized by paranoid schizophrenia and bi polar disorder. I displayed signs of the disease at about 2 to 4 years old. My mother even abused me for talking and mumbling to myself, and later I experienced the rollercoaster ride of bi polar disorder in my teenage years and the elevated anxieties of paranoid schizophrenia. Evidently the schizoaffective disorder which is a schizophrenia disorder does appear in very early childhood as is the case with myself. Ludwig Van Beethoven had the disease and was musiclaly gifted and I too was musically gifted and have been determined to have an I.Q. between 145 -160. These characteristics similar to january Schofield. I opened up a Harry Horton music myspace page with some music that i composed just to give an idea of the musical giftedness side of the disorder. So there are some similarities between what I have and January has, except the type of schizophrenia I have differs considerably from the schizophrenia that she possesses, (if she indeed has a form of schizophrenia). I have all kinds of obtrusive thoughts, paranoid fears that I have AIDs and the like when I do not, and some fears of being follwed by the CIA or police or whatever. Hygene goes down occasionally, and obsessive compulsive thoughts along with a biting aggression. All symptoms of a form of paranoid schizophrenia---its interesting that she describes some of her imaginary friends as having "biting" like behavours, since a biting behaviour is present with paranoid behavours evidently. I have that paranoid symptom also, the biting that is. In anycase she is an interesting case.

Lili Marlene said...

Jani reporting that her imaginary friend bites her is in no way the same type of thing as having a tendency to bite. Two completely different things.

Repetitive biting is a behavioural disorder that is a symptom of at least one genetic syndrome that I recall reading about. It could well be a symptom of other genetic syndromes. Many psychiatric diagnostic categories are scientifically rubbish. They have no precision and can be routinely misused and applied to just about anyone. Depression, bipolar and schizoaffective disorder are some examples. In contrast, to get a diagnosis of a genetic syndrome one needs to have many physical manifestations, which are often very rare and distinctive. This is why any day of the week, I'd prefer to consider biting in the light of a diagnosis of a genetic syndrome than as a possible symptom of some vaguely-defined psychiatric label. If I were you, I would be far from satisfied with the label of schizoaffective disorder.

I've not read the literature about schizophrenia and related disorders in great depth, but I've read many layperson's articles about the disorder and journal paper abstracts, and the overall picture that I see is that schizophrenia is a form of mental decline causing mental illness, with a basis in a decrease in brain volume. How could such a type of disorder be regarded as having giftedness or high IQ as a characteristic? I can't even see how a high level of mental functioning could be consistent with it.

I believe that schizoaffective disorder is the diagnosis that was given to the eccentric and long-institutionalized Australian pianist David Helfgott. Many people believe he is actually autistic. I believe that label is closer to the truth.

Lili Marlene said...

Beethoven has also been (posthumously) diagnosed as autistic. I'm sure he's also been labelled as ADHD, bipolar, etc etc. As I said, many psychiatric labels are so ill-defined that they can be widely applied, and also can be applied just as aptly as another label. This is a sign that much is amiss in the practices of amateur and professional psychiatry.

Anonymous said...

I am a clinical psychologist and do not agree that childhood schizophrenia is a real disease. Over the past 15 years of extensive, rigorous research, it has been proven that schizophrenia develops as does the prefrontal cortex when neurons are disconnected and misfire.

Lili Marlene said...

Anon, you haven't given your name, so we can't assume anything about you, qualifications or a lack of qualifications.

My understanding of schizophrenia is similar to yours, that it is caused by a lack of connections in the brain, and that this happens as the result too much brain pruning during a normal phase of pruning in adolescence to the 20s. I've also read that the front parts of the brain don't finish developing till the 20s, so your theory sounds possible too, but could that still be accounted for as a defect in the pruning process? Do the front parts of the brain still grow in a person's 20s, or is the final stage of the development of these parts actually just pruning back?

Lili Marlene said...

This is some interesting reading on the topic of theories about the cause of schizophrenia and modelling how it might operate, from Dr Kevin Mitchell, a neuroscience researcher who works at a university:
http://wiringthebrain.blogspot.com.au/2011/07/hallucinating-neural-networks.html

Anonymous said...

This is an amazing article. My son (age 11) has been diagnosed ADD, ADHD, Aspergers, Dissassociative (sp?) disorder, Borderline schizophrenia, basically everthing under the sun starting at age 4! This past summer I said enough is enough, no more drugs!!! He was on anti psychotics at adult dosages (Seroquel) and methalin (Ritalin). Since we took him off the drugs he is actually NOT hearing voices or seeing people that aren't there. Don't ever take what a doctor tells you at face value! Always do you research, read read read! My kiddo has now gained weight, been less destructive, his "fuse" has gotten longer and he started middle school this year and is doing great! Thank you again for the article!

Lili Marlene said...

Holy Smoke! Sounds like the doctors have been watching too much Oprah Winfrey Show and Discovery Channel.

Anonymous said...

I don't understand how you can accuse this girl's family and doctors of skipping to a sensational diagnosis without considering an alternative, when you yourself have never met the girl. All that you know about her is from articles and tv spots. You are being extremely hypocritical in judging her based on your own, limited understanding of her experiences. I think it would be interesting to see what Jani has to say about all of the speculation on her condition when she gets older. I'm sure there are enough people like you making rash judgements about her condition to make her job of sorting out her identity even more difficult.

Lili Marlene said...

Have you actually seen the volume of material about Jani that is in the public domain? I have based my opinions on reading and viewing a HUGE amount of material, much of it written by Jani's father. This list of sources was compiled by me years ago, and there's now an entire book and more TV coverage to add to it:
http://incorrectpleasures.blogspot.com.au/2010/04/troubled-young-child-as-celebrity-it.html
You don't think all that is something to base an opinion on?

It is obvious to anyone with a basic knowledge of the subject that Jani has OLP synaesthesia. It is also very clear that this has been ignored by everyone in the many media stories about Jani that I've found. Why is this obvious fact about Jani being overlooked or ignored? I don't think it is too much to ask for an answer to that question. Schizophrenia does not cause an obsession with concepts that are typically learned around the age of 5 and are typically learned in a set sequence, but many different types of synaesthesia have this very specific characteristic. Why is Jani's obvious syanesthesia still unacknowledged by all of those who have power over her? (I'm assuming that Jani's father's book does not cover this issue - I've not been able to get a copy of the book yet). It is as obvious as the nose on my face that Jani's so-called hallucinations bear a very striking resemblance to OLP synaesthesia, unlike the usual concept of psychosis. I'm not going out on any limb in asserting this.

Unknown said...

Lili Marlene should get her own blog and take her opinions there; they are too long and obscure the other comments, as well as attempts at discussion. You may not choose to post my comment, but she has ruined this thread. She is also incorrect in many of her assertions and is nearly obsessive in trying to beat down other commenters. This is a very interesting article but I wouldn't dare voice an opinion because Lili will write a treatise attacking anything anyone says. Sorry.

Lili Marlene said...

Lili Marlene does have her own blog - it's this one.

VikiP said...

I've just recently come across the Jani Schofield story and find it utterly appalling that this child is being labeled a schizophrenic while being fed copious amounts of dangerous psychotic drugs. What's more disturbing is her parent's need to suck up media attention and the father's close-mindedness in seeking alternative diagnosis. I've read the blog and he refuses to even consider that it might be something else. Then I find out a book is coming out or has perhaps already been published and of course it makes sense that another possible diagnosis doesn't fit that agenda.

Watching videos of Jani, it seemed like many of the things she said are things she's been told over and over again by her parents and she's just repeating them. If you tell a child over and over again that she's schizophrenic, she's going to eventually believe that she is. As well, her mannerisms didn't display as a schizophrenic either, from what I've learned over the years and witnessed in the behaviour of two friends who have brothers diagnosed with it. It's a travesty that children are being diagnosed with mental illnesses at such a young age especially when the drugs they are given will often bring on delusions/paranoid thoughts, not to mention suicidal tendencies.

While I'm not familiar with synesthetes (though I will now do some research) it makes a lot of sense what you are saying. It's refreshing to see that not everyone who has seen this girl's story will buy into the readily available diagnosis she's been given without questioning to some extent. Many comments I've read (especially on Michael's blog) are from people who get emotionally tugged by the story. I was happy to stumble upon your blog and read an intelligent response backed by what appears to be obvious knowledge of the subject matter.

VikiP said...

Unknown said...
"Lili Marlene should get her own blog and take her opinions there; they are too long and obscure the other comments, as well as attempts at discussion. You may not choose to post my comment, but she has ruined this thread. She is also incorrect in many of her assertions and is nearly obsessive in trying to beat down other commenters. This is a very interesting article but I wouldn't dare voice an opinion because Lili will write a treatise attacking anything anyone says. Sorry."

Wow! Unknown, I have read this entire thread, albeit a fews years late :-) and I don't see anyone attacking anyone. If by attacking you refer to the intelligent exchange that has occurred (with the exception of the demonic references) and information being shared, then I think you have a very distorted idea of what "attacking" looks like. Stating an opinion, making an educated argument supported by FACTS is not attacking. By all means if you have an intelligent retort that is supported by facts, do express yourself.

Lili Marlene said...

Many thanks for your comments, VikiP. You've mentioned the issue that is one of my biggest objections to what has happened to Jani - that the consideration of alternative diagnoses or explanations for Jani's differences has been too narrow and appears to have been curtailed by her parents. I've borrowed a copy of Jani's father's book and I've read parts of it. He writes well, but so far I've seen no mention of synaesthesia, and as far as I can tell from doing a search on the Amazon record for the book, the subject of synesthesia is never mentioned in the book. There's no acknowledgement of synesthesia as a possible explanation or a theory held by others in the book's introduction, and there's no acknowledgement of any of my writing about Jani, even though I know that my articles on Jani have been widely read. I'm sure Jani's father isn't just unaware or blinkered. He couldn't be unaware of synaesthesia as a likely explanation, after the years that my writing about Jani has featured prominently in Google searches. I'm sure he's purposely omitting considerations of synaesthesia from his writing and all media representations, because it is clearly a more fitting "diagnosis" than schizophrenia for Jani, and and his whole world hangs from the premise that he is the father of a child schizophrenic.

Initially NO said...

There is abvious symbolism with numbers and drawing blood from numbers.Think about how many times this child has been subjected to medical queues and had her blood taken? I have a younger bro who had flappy hands and sensory diphoria that meant he'd run onto roads and eat dishwashing detergent and find sounds louder than most kids do. He got subjected to many, many medical tests until my mother said: I'm not going to do that to him anymore. He wasn't forced to take medication for his ID of 'autism'. But he also had his secret world of imaginary things. He's 18 now and has grown out of most of those things and is a calm and compassionate adult who is good with computers, but still has a little difficulty with hand-writing.
Symbology is very prevalent in young children. I couldn't stomach more than one video of her. The verbal abuse from her mother was horrible. And Jani was so obviously compliant with confusing commands. As for 'January' clashing with her self image. That's obvious paronmasia,but potentially something awful has also happened in January, or she doesn't like the cold!
I'm going to try and forget that this is happening, this obvious child abuse. It's so upsetting that it is condoned by so many and encouraged by psychiatry. Really wrong and horribly sad. Jani may've been a 'difficult' child but her mother is so dominating and controlling on video, it's cruel. I'd hate to see her when cameras are off.

Lili Marlene said...

Thanks for your comment, Initially No. I'm glad that your mother had more sense than to believe that some one-size-fits-all drug could "cure" the one-label-fits-all-badly syndrome of autism. Thanks for sharing your interesting info.

My interpretation of Jani's ambition to be a nurse as a job was that like most young girls, she follows gender stereotypes without question. One of our own kids had a similar ambition.

Your comments about Jani and medical tests made me wonder what medical tests she is likely to have had, and I'm not sure that I'd assume that physical illnesses have been exhaustively ruled out for her behaviour. Have I forgotten about anything about this written in the book? I don't recall reading anything about Jani having had her genome checked, which is a bit curious, considering that her father claims there is a family history of schizophrenia. My bet is that if her genome was checked it would turn up a gene or two linked to synaesthesia and/or the autistic spectrum. If that were the case, I'm sure M. Schofield wouldn't have been in any rush to share that with the world. Jani's privacy apparently needn't be considered, as parents routinely put their kids on current affairs TV shows as cases of rare genetic disorders. I saw a little autistic boy with 2 chromosomal micro-deletions on Aussie TV just the other night.

Anonymous said...

Thank you for writing such an eloquent and compelling piece about Jani and her situation. As she matures I wonder how she will present her illness to the world. Of course we wish the best for the family but many of us seem to have questions concerning her diagnosis.

Her story has become quite a popular discussion point. Your points about synaesthesia, confabulation, imagination, and possible misdiagnosis are certainly very compelling, especially when we remember the fact that Jani has become the "face" of "schizophrenia" for so many members of the general public. She has been seen by millions after her appearances on Oprah and Dr. Phil (all of this in addition to the highly personal info in her father's memoir). I am (of course) not an M.D. (though I do have a Ph.D. -- but in the humanities!!). So, jmho. There is some information on schizophrenics available on youtube as well (interviews with male and female adult patients).

I too (together with posters here and on other sites) wonder if her parents dismiss challenges to the diagnosis too quickly. As so many have noted, the parents' behavior patterns -- possible narcissism, apparent lack of verbal inhibition, compulsive actions (the father's affair), hyper-controlling of both children, possible coaching/coaxing of Jani and Bodhi regarding "hallucinations" -- raise questions.

I remember the controversy over "recovered memory syndrome" in the 80s and 90s and the related issue of therapists and/or parents coaxing children into particular responses, using rewards when a "correct" response was given (the McMartin preschool case was an infamous example of the controversy as it related to the 80s ritual abuse panic).

The parents ask Jani for *drawings* of the various imaginary figures. This will almost certainly result in a specific "picture" forming in the mind of the child. The parents also comment that Jani never forgets any of her "friends" -- though I noticed that both parents constantly mention the various friends.

Many children invent worlds like "Calalini" in childhood (what would be done with the more eccentric fantasy or science fiction writers in this construct one wonders...). I am not sure that the world-creation should be collated with the "hallucinations."

What is striking about this is that schizophrenics disrupt context and behavior -- an imaginary dog described by a schizophrenic is likely not going to behave in a way that is relatively normal for a dog/rat/cat (Jani's "pets" bite, go on walks, make requests for food/petting, etc.). I do recall that one of the cats, I believe, told Jani something negative(suggesting that she jump off a building) but this seemed to be in response to her parents asking if the cat had in fact instructed her to perform any particular kind of action. Her parents were visibly more interested when the instructions were negative. (It is obvious that this would be the case, but considering your suggestions it may be a clue as to why her self-reports are being interpreted in certain strict ways).

I would be curious to see what her psychiatrist has to say about the matter of leading or coaxing when dealing with children in such contexts-- and how they have accounted for this problem (or not) in her treatment. Thank you again for your piece, and I apologize for the length of my comments.

Lili Marlene said...

Thanks for your comment. I agree that the influence of parents needs to be carefully considered by an clinician making a diagnosis of the mind of a child, but I think the most telling aspect of Jani as a supposed case of schizophrenia is how much she resembles a typical case of schizophrenia. It is my understanding that the category of child-onset schizophrenia has no official recognition, so I don't see much point in comparing Jani against a checklist of traits of that label, so instead I've compared her with what I know about adult schizophrenia, as an informed non-clinician. I don't think her "hallucinations" are at all typical of Sz nor do I think she displays the delusions of Sz which have narrative, personal and often paranoid qualities. There's nothing about Jani that can't be explained with reference to behavioural issues resulting from the failure to meet her unique educational needs, her synesthesia, her poor relationship with her parents, her well-developed imagination, and autistic traits. Indeed, Jani's fame means that for many Americans she is "the face of Schizophrenia" and this is a grave disservice to the many Americans who really do have this serious mental illness, because Jani isn't a typical case. She isn't a case at all.

On reading your comment I was a little bit concerned at your use of medical/clinical and pseudo-technical terminology in describing the behaviour of Jani's parents. I think they are just bad people, very poor parents but also people who have been horribly let down by their community, in the apparent deficit of good advice, practical support, parent educations classes and specialist support for them as parents of a highly intellectually gifted child. In writing such an opinion I've condemned many people and potentially made many enemies, but I'd rather do this than obscure the ugly truth behind a thicket of psychobabble and inappropriate medicalization of social problems.

Anonymous said...

Many of the same symptoms of schizophrenia in an early child can be misinterpreted, yet the fact that her imaginary friends inhabited NAMES of measurements and numbers and months only shows a fascination within these areas, which is also very common in both olp and schizophrenia, her having a high IQ also does not support your case. When there is a dysfunction within the communications of neuron and brain connections, you tend to show more signs of fascination and intellectuality in other areas. It is common in schizophrenia patients before they are completely "gone" from our world. Not saying it isn't possible that she has OLP, but then again it also isn't valid that she doesn't have schizophrenia. With OLP you have a common sense of what is a reality and what is not in here to Jani she realizes her reality and others may differ. Yet she still believe her hallucinations are the real reality. I am speaking on an outside view, so I am sorry if I am wrong at many points, because I do not live with either. BUT with MANY cases of OLP what they see is numbers and other objects as a specific colour or shape or painting that when mixed with other numbers and objects they form a different identity they easily recognized, hence savants in some case. Both are incredible and very mysterious neurological disorders and diseases that are very different, yet because you have a disease that carries many symptoms of another doesn't give you the right to ultimately criticize the parent's motives, or medical diagnosis.

Lili Marlene said...

I, who have experienced OLP for as long as I remember have been given a lecture about the nature of OLP by someone who doesn't have it and has not half a clue about it. How useful.

"BUT with MANY cases of OLP what they see is numbers and other objects as a specific colour or shape or painting that when mixed with other numbers and objects they form a different identity they easily recognized..."

Two problems with this. Firstly the colour thing is grapheme-colour synaesthesia, not OLP. Two different types of syn. Don't you know even the basics? Secondly, this passage looks like a description of something Daniel Tammet claims to have experienced. A couple of years ago Tammet was exposed as an unreliable person in a book by Joshua Foer, so only an ignorant person would cite Tammet as an example of synaesthesia. Even when he was considered genuine, he was also considered to be highly unrepresentative of syn in general.

"you have a disease". No I don't have a disease.

"the fact that her imaginary friends inhabited NAMES of measurements and numbers and months only shows a fascination within these areas, which is also very common in both olp and schizophrenia..."

Funny thing, I've always had OLP and I don't remember ever being particularly fascinated with letters or numbers, beyond literacy and numeracy. Where is your scholarly source evidence for your claim that being fascinated with measurements and numbers and months is VERY common in schizophrenia? I have never ever heard of any such thing.

Jani's father wrote that he was physically abusive towards Jani, so don't dispute me about the way Jani has been treated by her parents. Jani undeniably does have synaesthesia. And she doesn't display a single sign or symptom that can only be explained in terms of schizophrenia and which can't be explained by a statistically much more likely condition or problem.

ANGIE said...

I'm sorry but Lili, your comments are childish at best, lacking any hard evidence. What you are essentially doing is making assumptions that the girl has autism and synesthesia based on one or two characteristics, and then villianising the diagnosis of childhood onset schizophrenia by constantly bringing up past misdiagnoses. (When in reality that proves nothing)
Brain damage can definitely co-exist with synesthesia, as it depends on which part of the brain is damaged; you've stated that you know little of psychosis, which is why I feel that you have no credentials to debunk her diagnosis anyways. I have great knowledge of neurology, as I'd suspect the many doctors she went to may have been neurologists also. Furthermore, I think you have pathological reasons behind your overall push for autism and synesthesia. I've seen plenty of autistic and neurotypical individuals alike dissect autism while looking for a diagnosis, pushing all stereotypes out the window, while explaining that autism is such a broad disorder. There is nothing wrong with that other than the fact that they also do hat YOU do in this case, and that is to stereotype the alternative diagnosis of the case and act as if it is very stereotypical and rigid.
You are very wrong to do so, and you have little credentials. If I had to make a guess, I would say what you are doing here is projecting yourself on to the little girl, out of fear that you could have, or could be misdiagnosed with schizophrenia yourself. You need to let it go, and let professionals do there job, as you are not nearly as knowledgable on the subject of psychology to be making such assertions as you do.
By the way, I have synesthesia and I have never heard the colors or tastes giving me orders and commands, even though I associate certain people or names with colors and tastes. I also don't like to be around people and I do have some motor tics, but it still doesn't qualify me for autism, as autistics have to lack some theory of mind and social cognition unless they do not qualify for being autistic at all. I just thought you'd like to know that before throwing petty assumptions around based on your lack of knowledge. Thank you for your time.

Angie said...

It also seems to me, if I may add, that you've enabled comment moderation because you don't know jack, and you will only take on the comments you can argue with in at least a mini lie manner. Your arguing style though, seems to be of one overly defensive over her lack of knowledge. Let me dissect this: yes you have synesthesia, and you fear people with synesthesia being misdiagnosed with schizophrenia, correct? You are projecting the idea onto the little girl of this case, with little warrant or knowledge other than your emotion of fear for misdiagnosis.
You have very little knowledge of psychosis and seem to be claiming that you have the ability to misdiagnose it, which you certainly do not. Please take your time and put it into something else, you are not proving anything but your ignorance and aggressiveness. Many doctors claim that schizophrenia most,y occurs in adults, but is very rare in children. A minority of doctors actually agree with you. Many doctors believe that a lot people who go on to be diagnosed with schizophrenia as children can show signs of schizophrenia as children, but most of them who do so don't qualify for a full blown disorder while children. Either way, villainising the diagnosis of childhood onset schizophrenia does nothing to prove your case, neither does pointing out grammatical errors and trying to be little people.

Angie said...

Excuse my misspellings, grammar nazi, I find it hard to type on an I-pad.

Lili Marlene said...

"Excuse my misspellings, grammar nazi..."

Where do you get that from? I think that must be your own insecurities talking (or writing).

Lili Marlene said...

"Many doctors claim that schizophrenia most,y occurs in adults, but is very rare in children. A minority of doctors actually agree with you."

No, I've asked one of the world's leading authorities on the subject, a psychiatrist, and I've also checked the literature, and I'm sure the vast majority of shrinks regard childhood schizophrenia as either exceedingly rare or non-existent. I don't think its in the DSM.

Lili Marlene said...

"it also seems to me, if I may add, that you've enabled comment moderation because you don't know jack..."

I've used comment moderation since this blog started in 2006 or something because it would soon look like a sewer and a spamfest if I didn't use it.

Lili Marlene said...

"Brain damage can definitely co-exist with synesthesia..."

My point was that I find it hard to believe that a child can have an IQ of 146 and also have had brain damage. Her parents claim both. This would raise questions in the mind of any sensible person who was interested enough in the case to note all the details.

"I would say what you are doing here is projecting yourself on to the little girl, out of fear that you could have..."

Sorry, I don't believe in Santa Claus or the Tooth Fairy and I also don't believe in Freud. Very few Australians do.

Anonymous said...

I find it hard to believe what a judgemental person you are. You are not the one having to live daily with jani, and try to protect her and the rest of the family. So many of your comments are insensitive, harsh and most of all ignorant. You don't know the family, yet you are ready to crucify the parents who are doing their best. I don't know the family either, but I wish them happiness and peace. Keep up the good work.

Lili Marlene said...

Oh yes, I'm a judgemental person who knows nothing about the family who propped her eyes open with matchsticks to read through the entire moral and intellectual wasteland of Michael Schofield's book, and then bothered to write a considered review of the horrid thing. Oh yes, I know nothing at all.

Anonymous said...

I agree with all those who say that you have no right or knowledge to diagnose ANYONE, be it yourself or a stranger. Why don't you worry more about your own children than those whom you will never meet.

Lili Marlene said...

I never "diagnosed" myself with any mental illness, and what would you know about the level of my own interest in my own kids? I always get an idiot comment or three when the Jani media circus stirs up more interest in her story. I can't believe so many Americans can watch a child's life being destroyed and just watch.

Anonymous said...

Reading a book and some newspaper articles is not a substitute for, say, actually talking to a person, you know.

Lili Marlene said...

Spending many hours reading a whole book and too many articles, versus having a chat? I make no apologies for actually doing my homework and being across what has been written.

Anonymous said...

Some of you people are gross human beings. How can you blame these parents? As a family with this disorder this family is doing all they can. And are you guys doctors? Maybe your diagnosis after watching a tv show is better then the doctors? Idiots.

Amanda-Beth said...

I do not know what is wrong with her as I'm not with her on daily basos. However I do know from the videos childhood onset schizophrenia as her parents and the doc who was pushed into giving her that it just isn't that. Yes she displays characteristics of many things and her parents are nuts. Has anyone ever done reasearch on if gave systhisis pyscatric medicatiod. Or gave an autistic pyscatric medication I imgiane it wouldn't be good. I witnessed today in 1 when she was 10 bohdi(just for naming these kids these names you can tell they nuts) who curently diagnosed as autistic have a complex partial seizure I've experienced those from both sides of that that's how reconized it. I think perhaps with knowledge the family has provided us perhaps someone should take cloaer look for awhile at the kids wheb parents aren't around.

Lili Marlene said...

Doctors? I've seen a few, and have had myself and my kids incorrectly diagnosed by a few too. I don't know what American doctors are like, but here they take a stab at diagnosing ailments, then if the treatment doesn't work and the patient keeps coming back they scratch their heads and think about which kind of specialist to send you too, for painful and expensive testing after waiting months for an appointment. Then you might get a correct diagnosis. Or not.

Lili Marlene said...

I agree with Amanda-Beth. In one TV show about youths and kids diagnosed with schizophrenia, I recall there was a teenage girl (in the usual age-range for an onset of schizohprenia) who was clearly distressed, and was screaming and terrified, presumably tormented by hallucinations. In contrast Jani and another young girl were not distressed or screaming. Certainly Jani seemed to be seeing things that weren't there, but that could be explained as synaesthesia. The other young girl, I forget her name, just seemed to me to be putting on an act. Why I have no idea.

cwpsy said...

As I watched the second show on January I searched and found this blog. As a child/adol / family and trauma therapist I didn't like the schizo diagnosis, since I've seen many of these behaviors in my clients. I'm not going to propose a diagnosis, as I have no firsthand knowledge of the case, but I did appreciate some of the comments on synesthesia. Massive amounts of medication with long term effects will not help these children later in life...also may be interesting when she hits 20-30 yrs of age and she sues her parents for the accumulated damage they seem to be doing to her. Munchausen's by proxy is a closer diagnosis than schizophrenia. Plus the occupational therapist is fully indoctrinated into the family system. Since schizo is a progressive disorder, the fact that "she is doing so well" is a strong indication that this diagnosis is off the mark...everyone feel free to flame away....

Anonymous said...

Jani is a genius, eh? I bet she's smart enough to fake this whole thing just to get her way & pull the wool over everyone's eyes! She's OK when she does what she wants: make cupcakes etc. She basically has a "tantrum" about diarrhea or whatever when she doesn't get her way so people will allow her to do what she wants. If I were her parent, I would punish her every time she has an outburst. Learn she can't get her way. And if she was still that rebellious & uncontrollable: fine have it her way-she wants to pretend to be sick to get her way? I'll play along. OK Jani: you are sick, you are going to the hospital &living there, not coming back. You are being locked up, like in prison for being bad. I'd never visit her again......unless she truly repented. I mean c'mon: with such a high IQ even if she was very sick she would be smart enough to figure out the things she sees is fake. Everyone has free will. She could choose top ignore voices & stuff. But I tell you watching this bogus on video is a good way to get a good laugh: Ha, Ha!

Lili Marlene said...

Sounds like you just don't like children.

Char said...

Your blog is quite amazing. I could happily spend the next year there ...

Are you aware of the fact that the person who coined the name "Indigo Child" is / was a synaesthete?

Lili Marlene said...

Thank you for your kind comment, Char! No I didn't know about a link between synaesthesia and the notion of the "indigo child". I'll have to look into that. Is there any specific document where it is mentioned that this person is a synaesthete or a description of their synaesthesia experiences?

Chelsea said...

As an autistic OTP as well, Jani's experience with numbers and animals mirrors my own. When I was a child, I also created imaginary friends out of each personified number, in the form of a colorful talking cat which I called the "tabis". I knew that these tabises did not physically exist, nor did they order me to cause harm on myself or others. Luckily my parents knew that I did not have a mental illness, but rather a hyperactive and unique imagination caused by my autism. They did not know about my synesthesia, though. They insisted that I keep my animal friends to myself, but I stubbornly refused despite the teasing I got from my classmates. I insisted that my classmates were the ones with the problem, not me. Nobody yet told me about my diagnoses, and not until high school did I know about synesthesia. But it turns out that I was right; the rest of the world is ableist towards both autistics and mentally ill, and it is a shame that I should have to keep my creative mind to myself just to keep a good reputation.

http://cheetahchottahpress.wordpress.com/2013/08/21/jani-schofield/

Lili Marlene said...

Thanks Chelsea (a popular name at the moment). Did you mean OLP? It's interesting to read an account of OLP being a part of the common and normal childhood experience of imaginary friends. This appears to be what has happened in Jani's case, but of course, no one can ever be sure of what is happening inside the mind of another person. I feel that I should point out that having imaginary friends is a common and completely normal experience, and I beleive one or more studied have found that it is not associated with anyting pathological, but is linked with increased social skills in later life. That's what I recall, anyway. Google it an no doubt you will find press reports about findings on imaginary friends from a year ot 2 ago.

Chelsea said...

And since autistic people take longer to develop social skills, it makes sense to say that they will keep their imaginary friends for longer than neurotypical kids.

Anonymous said...

Touche. Great arguments. Keep up the good effort.


My web page - book of ra spielen

par4982@aol.com said...

Omg!!! I'm not sure who wrote this, but Please respond to me. I have a nine year old girl that has a very confirmed diagnosis of childhood onset schizophrenia. She was in a study at th e national institute of health in wash, dc , the largest research hospital in the world!!! Yes, it is very very rare, especially under the age of ten. I do not believe that jani has schizophrenia, my daughter is absolutely nothing like jani. I can explain I. Many ways how she is different. She is not at all violent, in fact she is afraid of others. I wonder if they contacted the nih. They do a very detailed screening and interview and knock out the ones that are not.

Lili Marlene said...

Sorry that I left this comment unpublished for so long!

See the article at this link, which divulges that Jani's parents tried to get her into "a top-flight study on child schizophrenia at the National Institute of Mental Health" but Jani was rejected reportedly due to evidence of brain damage. If the source of this info about why Jani was rejected was the parents alone, and if one regards the parents as unreliable sources, one could speculate that there might have been a different reason why she was rejected from that study.
http://latimesblogs.latimes.com/booster_shots/2009/09/jani-schofield-schizophrenia.html

As I've stated elsewhere, I find it hard to believe that Jani has brain damage, as her father has claimed that she has an IQ well into the gifted range, and common sense would indicate that isn't consistent with brain damage. Michael Schofield's accounts of Jani also are consistent with Jani being intellectually gifted.

Lili Marlene said...

I'm sorry to read that your daughter has such troubles. I very much hope the doctors are able to support and help you and your daughter in effective and non-damaging ways.

Lili Marlene said...

If you offer spam or an ad hominem argument or comment here, expect to find that your comment has not got through the moderation process.

Anonymous said...

I threw up when I spent an entire weekend watching Jani's utube videos and reading about her. The reason why I threw up was because of what I saw, what is reality, is the fact that Jani's parents are abusing her and slowly killing her with all of that antipsychotic medication they are giving her. They are mentally and physically destroying her. I agree with the other writer in this blog saying that it is disgusting to see what's happening to this little girl and the world watching and nobody doing anything about helping Jani out of this situation. I feel that Jani should be taken away from her parents, and taken off all this antipsychotic medication, she shouldn't be on any medication. It has been proven that this medication causes brain damage. It also has horrible side effects, read about it, I have read about the side effects because I was taking antiphsychotics for 4 years and now I am off of them. I feel like my normal self now, and healthy. I have also read that these medications cause a low white blood cell count. I feel I have been mis-diagnosed with schizophrenia. This medication causes insomnia, did you see the black circles around Jani's eyes? Her parents are abusing her and killing her. I live in Canada, I wish I could do something about this like have Jani removed from her parents. Another writer was right, her mother is mentally abusive toward Jani. Her father has hit her. Why doesn't the government take Jani away from her parents? It makes me sick that they are getting away with this abuse. Someone please help. I cannot help because I am a poor single mother that can't afford to.

F*%K Jani's Dad said...

Not sure if this convo has died down as I am unfamiliar with the site and I don't see dates, that said, THANK FU¢√|NG GOD (hope that didn't mess with anyones weird brain abnormalities involving talking numbers from kids shows from the 70's ;) ) that there is now a public awareness, better, a sort of digital age lynch mob that has finally outed this psychotic for the fraud that she is. Of course I'm refering to Oprah Winfrey! Worse, The SHAMenfelds are being seen as the masterfully abusive criminals that they are. Whores. Btw,to the guy/gal that suggested the government come take her away, I'm fairly certain you're not from the US. 2 words....MK Ultra. Bad enough she's been institutionalized and practically pharmacutically labotomized, (I'm sure we all know what the hardcore drugs she's been taking throughout some of her most formative years were intented to emulate. Clue: zzzzzzzzzzzzzzzap!) let's not leave her in DARPA'S hands. Back when the Jani sham started (I 1st learned of her in the LA Times articles, which btw after growing up reading the NY Times I move to change the name of to the LA Post) I was working in broadcasting. I fu¢©ing lost it on air. My rant bordered on a (purely for comedic purposes) anti semetic rant about over involved, attention seeking an d MunchB.pxy jewish parents from NY and LA (as I alluded to, my 2 homes). Jani has a beautiful mind, her parents are scum, oprah should be in a padded room and speaking from a purely degenrate POV, JANI is clearly gonna be HOT.....IF she's not a 400 pound diabetic vegatable by the time she's legal. In my own awful way, I'm saying she's a beautiful girl with an incredible mind that is being destroyed by modern day nazi scientists. Lastly, from everything I've studied, from extensive radio show research/stories from colleagues; UCLA docs seem to have a generally horrible tendency towards antiquated diagnosis for the purpose of conventional western doping with the tardive dyskenesia (sp?) spectrum of psychosmack. So sad. She'd be better off living out in the woods or something figuring out how to cure bad parenting-induced violence and boredom. Confucious say: the nail that stands out gets hammered down. And YES, this has everything to do with yesterday being Mothers Day. Bad parents, doctors, governments, educators....no wonder kids don't trust adults and disappear to Calalini to hang out with 9/11 the cat. Apologies for potential non sequitors and terrible spelling. Been up all night self medicating....I figure better me than them! -Ryan Seacrest

Jani's Dad's A Dick said...

Again, and bad jokes aside, so glad to see this convo. From A Million Little Pieces to Jani's parents....question it! Although many status quo enforcers on here would disagree BEWARE THE DOCTORS and the manufactured belief that we are inadequate unless institutionally educated. Who taught Jimi Hendrix how to revolutionalize the guitar? A professional? No...a bored black kid named Jimi. -Drew Pinsky

Mike Scho Beat Jani said...

Oh sorry....Last thing. 'An island named Calilini' ????? Anyone from Southern California knows what the HELL she was trying to say when started hanging out there at age 3....Anyone? Mr. Schofield? You're from SoCal. Catalina, you stupid agenda ridden tool! -Dr. Phil