Friday, May 20, 2011

Sane Aussie youths sure to get caught up in McGorry’s net(work) – more early-interference madness to be foist upon Australian families

(this post added to a number of times after 1st publication)

In the recent federal budget the former Australian of the Year Prof. Patrick McGorry has been promised funding by the Gillard Government for his Early Psychosis Prevention and Intervention Centres (EPPIC), after unsuccessfully soliciting for funding from the Rudd Government. McGorry has at one time or another received research grant support from a number of different drug companies (McGorry 2008), so he has conflicting interests. Large numbers of Australians who have uncritically accepted the promotion by McGorry and colleagues of the idea of early intervention for teens thought to be at risk of developing psychosis will no doubt be happy with the Gillard Government’s different attitude towards McGorry’s vision. The Australian public have already been sold the idea of early intervention into the lives of our youngest children, so it appears that Australia is fertile ground for McGorry’s proactive plans for adolescent and teen Australians.

Early intervention into the lives of the young is a concept that has already worked its way through Australian society, like a dose of the salts. The idea that proactive, expert-led parenting and early intervention from various types of allied health professionals can prevent young children from developing into autistics or people who will have problems or be a problem for society has won huge popularity with the Australian public at large, despite a lack of an evidence-base for many of these claims. In the US organizations such as Zero to Three have aggressively promoted to parents the idea that early intervention is very effective and often crucial for a young child’s healthy development, and that the quality of parenting can have a major influence on the development of the brains of babies and toddlers, citing neuroscience in questionable ways. In Australia organizations such as NGALA have been promoting a similar story to parents, frightening vulnerable new mothers with photographs of brightly-coloured scans of stunted brains of neglected infants from Romanian orphanages. The negative side of the early intervention story is the implication that bad or neglectful parenting is to blame when children develop in ways that are not considered desirable by society, even though there is overwhelming evidence that many developmental differences and disabilities are inborn, medical or genetic in origin. This is a modern echo of the discredited, unscientific, damaging and unfair refrigerator-mother theory about the origins of autism and schizophrenia that was espoused by the imposter psychotherapist Bruno Bettelheim, which was popular in the in the 1950s, 1960s and the 1970s. Ideas championed by the modern-day early intervention movement have been criticised in books such as The Myth of the First Three Years by John Bruer and books by psychologist Judith Rich Harris.

The very popular but also very questionable early intervention story has been adopted by Australian psychiatry and this profession will soon claim many more Australian teenagers as potential clients, but not everyone is happy to give psychiatrists a greater role in the care of our young adults. Martin Whitely, a WA Labor MP and a long-time campaigner against the use of ADHD drugs has aired his concerns about Prof. McGorry’s plans in a recent ABC News story:
"Professor McGorry is a leading international proponent of a new psychiatric disorder that's for inclusion in the next edition of the DSM-5, the bible of psychiatry if you like," Labor MP Martin Whitley said. "It's a disorder called Psychosis Risk Syndrome and it hypothesises that you can spot adolescents and teenagers who are likely to become psychotic. And even Professor McGorry acknowledges that most of those diagnosed will in fact be false positives, so most of those will never go on to develop psychosis.”


The false identification of young non-psychotic people as psychotic should be considered a very serious matter, considering the social stigma that will always be associated with a mental illness diagnosis which can follow an individual for the rest of their life, the vulnerability of adolescents at a time of life when they need to be establishing a place for themselves in society, and the many serious side-effects of anti-psychotic drugs, which include substantial weight gain (with associated health risks), lassitude, fatigue, drowsiness, breast swelling (in both sexes) and permanent disfiguring facial tics. I’m sure there aren’t too many teenage boys who would be willing accept the development of breasts or crazy-looking facial tics as a side effect of a drug given in the hope that it might prevent the development of a mental illness.

Martin Whitely is not the only authority to express concern about the recent movement advocating the early or pre-emptive identification of psychosis in young people. In a 2010 article published at Psychology Today, Dr Allen Frances, chair of the DSM-IV Task Force and professor emeritus at the department of psychiatry at Duke University School of Medicine, identified the proposed new diagnostic category of “Psychosis Risk Syndrome” which has apparently been championed by Prof. McGorry, as “the most ill conceived and potentially harmful” of all of the problematic suggestions for DSM5, which is the upcoming revision of the diagnostic manual of American (and by default international) psychiatry. Dr Allen Francis foresees the incorrect identification of a number of different types of young people as potentially psychotic once they are bought in for assessment by family members: drug users, rebellious adolescents with developmental issues, adolescents displaying culturally dystonic creativity, stable schizotypal personalities and the normally eccentric. To Dr Francis’ list I would add synaesthete youths, based on what I know about two case histories of girls who have been diagnosed as schizophrenic.

I have written a number of widely-read articles about Jani (January) Schofield, a young intellectually gifted Californian girl who has been given the diagnosis of "child-onset schizophrenia" by a psychiatrist at UCLA, but has not responded to treatment with reportedly heavy doses of anti-psychotic drugs. Jani has been institutionalized at least seven times in psychiatric hospitals, but to my knowledge has never attended a normal school classroom for any length of time. She has been at the centre of a media circus, appearing on the top-rating American Oprah TV show in 2009 and has been featured in numerous press and commercial TV stories. I have listed many features of Jani’s case that are suggestive of synaesthesia and autism, and I have argued against her diagnosis of schizophrenia. I have expressed my dismay that so little has been written or spoken about Jani’s reported IQ of 146. As the parent of children who have independently been identified as intellectually gifted, I know that giftedness is a characteristic that has important implications for parenting and education and the general well-being of the child. Specialist educators acknowledge that gifted children whose educational needs are not met can develop behavioural or mental health issues. I fear that Prof. McGorry’s push to identify psychosis and risk of psychosis in younger Australian patients could result in us seeing cases like the Jani Schofield scandal in Australia. As a synaesthete who understands the harmlessness, the usefulness and the strangeness of synaesthesia, the thought of fellow-synaesthetes being misidentified as psychotic bothers me a lot. Is there any evidence that my fears are justified, beyond the Schofield case?

I have read a few personal accounts by synaesthetes reporting their misdiagnosis as schizophrenic, 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 synasesthesia experienced by a female patient as hallucinations of schizophrenia. The female synaesthete was apparently prescribed antipsychotic medication 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 it became clear that someone had made a terrible clinical error. One could assume that this case happened in the US, as Prof. Ramachandran works in a Californian university.

A quick look at a factsheet about “at risk mental state and young people” available from the website of Orygen Youth Health does nothing to reassure me that Prof. McGorry’s youth mental health network have a clear understanding of the difference between people on the cusp of insanity and the merely odd, dim or unusual. The information given seems illogical, self-contradictory and vague. There is a reference to “young people who appear to be at ultra high risk of developing a mental illness”. There seems to be hardly any point in estimating an “ultra high” degree of risk if there is lack of certainty about the risk. The factsheet explains that “symptoms for the prodrome of psychosis are common in adolescence” but I know that genuine psychosis is a rare event, so it follows that there must be no “ultra high risk” associated with prodrome. So where is the justification for using the phrase “ultra high risk” anywhere in this factsheet? Three different groups of people are identified in the factsheet who are claimed to be at increased risk of developing a psychotic illness. It is the varied and vague traits of group 2, those displaying “subthreshold psychotic symptoms”, that I’m most concerned about. According to Orygen, “brief “bursts” of ... seeing visions” is a subthreshold psychotic symptom, but this could also plausibly be a description of any number of different visual types of synaesthesia. “Misinterpreting events/comments” are also cited as subthreshold psychotic symptoms, but I don’t think it’s too much of a stretch to claim that these behaviours could also be symptoms of simple stupidity.

My own in-person encounter with a representative of Prof. McGorry's youth mental health network at a youth-oriented event has done nothing to reassure me that this service is able to distinguish between the symptoms of psychosis and non-psychotic experiences. I described a common type of synaesthesia experience. The representative of this service advised that a proper professional assessment would be required to judge whether such an experience was a mental health concern. This person showed no idication that they knew what synaesthesia is. Even if the person who I spoke to was not a fully qualified mental health professional, surely anyone in the frontline of a walk-in service specializing in the diagnosis of psychosis should at least know of the existence of a harmless and common neurological condition that can easily be misidentified as psychosis by those who lack knowledge.

The feature of the Orygen Youth Health online factsheet about "at risk mental state and young people" that I found the most odd is a lack of mention of illicit drug use as a cause of psychosis in youth or as an issue complicating the clinical picture. This seems a most curious omission, but I think there could be a reason why this matter has been avoided. It seems inevitable that any youth mental health service will have to deal with drug and alcohol users and addiction issues, but it appears that McGorry’s service does not offer expertise or services in these areas. One wonders what they will do with youth who enter their service and who have substance use issues. Will these issues be ignored, or will the patients be given the run-around and referred on to other services? I see nothing in the information available about McGorry’s services to refute or address the reasonable argument that youth mental health issues are generally really substance use issues, and should be treated as such.

Professor Patrick McGorry has a high profile in Australia as a former Australian of the Year and is highly regarded by many, but the idea of early identification of psychosis is not the only aspect of McGorry’s clinical practice that has been subject to questioning from within Australia. In January 2010 Prof. McGorry was asked in an ABC interview about the diagnosis of borderline personality disorder, a diagnosis that is given a questionable emphasis in McGorry’s mental health services, to the exclusion of other personality disorders. McGorry acknowledged that there has been controversy associated with the diagnosis. The interviewer later mentioned that there are similarities between the symptoms of borderline PD and the normal turbulence of adolescence.

In the face of often-cited evidence that schizophrenics in third-world countries who do not get access to modern anti-psychotic drugs have a better recovery rate than treated schizophrenics in developed nations, Professor McGorry’s ambition to treat more young Australians in his early psychosis centres, including some who do not display full symptoms of psychosis, should be questioned and opposed, and at the very least subjected to the closest scrutiny and genuinely independent professional review.

P. S. You were right, Mr Rudd!


References and recommended reading

Ahmed, Tanveer (2010) Mental health claims overblown. Sydney Morning Herald. smh.com.au August 12, 2010.
http://www.smh.com.au/opinion/politics/mental-health-claims-overblown-20100811-11zoj.html

APANA Autistic People Against Neuroleptic Abuse
http://www.dinahm.pwp.blueyonder.co.uk/

Attard, Monica (2010) Professor Patrick McGorry, 2010 Australian of the Year. Sunday Profile. ABC Radio National. January 31st 2010.
http://www.abc.net.au/rn/sundayprofile/stories/2010/2806382.htm

Bruer, John (1999) The Myth of the First Three Years: A New Understanding of Early Brain Development and Lifelong Learning. Free Press, 1999.

Harris, Judith Rich (2009) The Nurture Assumption: Why Children Turn Out the Way They Do. Revised and updated edition. Free Press, 2009.

Lili Marlene (accessed 2011) Jani Schofield - I’m sorry that I’ll have to add this sad and shameful tale to my list of famous synesthetes. Incorrect Pleasures. April 2010, edited 2011.
http://incorrectpleasures.blogspot.com/2010/04/jani-schofield-im-sorry-that-ill-have.html

McGorry, Patrick (2008) Is early intervention in the major psychiatric disorders justified? Yes. British Medical Journal. August 4th 2008. 337:a695.
http://www.bmj.com/content/337/bmj.a695.full

Orygen Youth Health (2008) At risk mental state and young people. Orygen Youth Health. July 2008.
http://tc.oyh.org.au/sites/all/files/downloads/oyh_fs_atrisk.pdf

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

Speed Up & Sit Still (blog of Martin Whitely MLA)
http://speedupsitstill.com/

Webb, David and Raven, Melissa (2010) McGorry's 'early intervention' in mental health: a prescription for disaster. On Line Opinion. April 6th 2010.
http://www.onlineopinion.com.au/view.asp?article=10267

Weber, David (2011) Mental health centres under attack. ABC News. May 12, 2011.
http://www.abc.net.au/news/stories/2011/05/12/3215323.htm

Weber, Patrick (2011) Professor McGorry hits back at critics. The World Today. ABC Radio National. May 20 2011.
Audio:
http://www.abc.net.au/news/audio/2011/05/20/3222359.htm
Transcript:
http://www.abc.net.au/worldtoday/content/2011/s3222359.htm

Whitaker, Robert (2010) Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. Crown, 2010.

13 comments:

usethebrainsgodgiveyou said...

Bravissimo!

Lili Marlene said...

Oh thank you! Interesting new name.

usethebrainsgodgiveyou said...

It's what my father used to tell me all the time...I was a little "scattered". It was the only time, being raised in a very catholic family, that he didn't use God's name in vane, vein, vain...there ya go!

He's gone now...it's in his honor!

krex said...

As to what idiots would let strangers use their off-spring as lab rats...I assume these would be the same group of folks refusing to vaccinate their kids for fear of side effects ? It is sad how many innocent children are always caught in the nets of stupid humans making bad choices due to emotional manipulation by unethical and greedy individuals .

"Just because one plane is flying out of formation does not mean that the formation is on course..." RD Lange in his book about schizophrenia, "The Politics of Experience", this was a book I read at the impressionable age of 18 and has been my personal mantra since . Although I admit I am often off course, I find that to be no justification for forcing me to fly in a formation that I believe is equally off course .

Saw an interesting and relevant marathon yesterday in US called "The Ingenious Mind" highly recommend it if you get a chance to view it .The most important part related to this topic was that the human brain rewires itself to be most effective at doing tasks that it needs to do to survive. I personally would trust my brain and time to rewire itself for my best functioning without the intervention of flawed and untested scientific "interference" .I think I know which would have my best interest at heart .

Lili Marlene said...

Krex wrote:
"I personally would trust my brain and time to rewire itself for my best functioning without the intervention of flawed and untested scientific "interference" .I think I know which would have my best interest at heart."

I'd never try to minimize what a serious disease genuine schizophrenia is, but from what I've read in Whitaker's book the patient is better off without the modern drugs, because there is a natural resilience and the drugs have terrible disabling and unhealthy side-effects.

usethebrainsgodgiveyou said...

Thorazine was supposed to empty out the mental wards...remember?

I saw Ingenius Minds...very good!

Lili Marlene said...

"Thorazine's not helping me very much."
- January Schofield

usethebrainsgodgiveyou said...

She'll develop a nice tongue thrust, though, if they keep her on it.

Lili Marlene said...

Just what a young lady needs.

krex said...

I do think that there are some people who are actually "suffering" from schizophrenia and I'm not trying to romanticize it but I do not trust that the medical community has a good enough understanding of what causes it to start tinkering with early intervention with every kid who "might" develop it some day . I was a weird little kid and I think that if the popular theory of my weirdness.....(that I was abandoned by my parents and probably had repressed sexual abuse<----not true, by the way), they would have assumed that my weirdness was "crazy" . Just saying, they already know that schizophrenia tends not to show up until late teens and twenties...could we please not go backward...(following the insane example of DXing autistic infants ) by pretending that we can DX crazy in children .

Interesting thing in the ingenious mind was a possibility that it involved taking in to much information to quickly and the inability to sort through it fast enough for it to make sense . Reminds me of the other book that had a profound impression on me at 18...."The Doors of Perception" . Synopsis is that hallucinogens removed the brains "filter" that moderates the intake and filtering of sensory information . That is certainly what it felt like during my own "scientific" experimenting .Isn't that how many young children///especially those who are hyper-sensitive, experience the world ?

Lili Marlene said...

Krex wrote:
"I do think that there are some people who are actually "suffering" from schizophrenia and I'm not trying to romanticize it but I do not trust that the medical community has a good enough understanding of what causes it to start tinkering with early intervention with every kid who "might" develop it some day ."

I agree completely. I've never denied that there really is a terrible mental illness called schizophrenia. I just doubt the ability of quacks to discern between it and other things, and I've very little time for the idea that it can be predicted.

Krex wrote:
"Synopsis is that hallucinogens removed the brains "filter" that moderates the intake and filtering of sensory information . That is certainly what it felt like during my own "scientific" experimenting .Isn't that how many young children///especially those who are hyper-sensitive, experience the world ?"

I've not done drugs but that sounds plausible to me. When I'm tired I can easily tell when my filters fail, and temporary sensory hypersensitivity is also commonly is associated with migraine and headaches. But autism is also associated with a permanent type of sensory hypersensitity, which I think is different. I believe it is an increased ability to perceive difference in sensory intensity.

usethebrainsgodgiveyou said...

I wonder how many mental problems are drug problems...I had a friend who was put on Thorazine for Schizophrenia/Major Depression/Personality Disorder (all "labels" she had...she told me they "changed" according to who saw her.) I'm guessing the tongue thrust and emotional liability were caused by the thorazine. THAT's what made her "look" crazy.

(Do I use "quotes" too much?? Sorry, thinking outloud...)

Rose

Lili Marlene said...

I'm not sure about Thorazine specifically, but there are many anti-psychotic drugs that cause permanent crazy-looking facial and tongue tics. It is so sad that the drug can made people look much crazier than they actually are.