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.
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
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
Daniel Tammet
(an intellectually gifted autistic synesthete savant who experiences ordinal-linguistic personification)
Wikipedia
http://en.wikipedia.org/wiki/Daniel_Tammet
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
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45 comments:
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.
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.
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).
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.
You're commenting on others and providing a diagnosis when you're only self-diagnosed.
Good grief. What arrogance.
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!
Oh, and no attempts at tricks or cheats, you must do the test in good faith!
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
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.
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.
What kind of Christmas will Jani be having?
"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.
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.
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.
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.
"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.
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...
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.
"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.
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.
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!
Synethesia does not explain her outbursts of violence or suicidal behavior.
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.
typo - "cranky".
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.
"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.
And thanks for your comment. Who needs sleep?
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.
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.
"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.
"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.
"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.
"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.
"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.
"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.
"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!
"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".
"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.
"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!
"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.
"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.
"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?
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.
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.
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.
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