On 19.01.2013 the Guardian’s weekend magazine published a story entitled ‘My daughter the schizophrenic’. I was previously aware of this little girl as I had seen the documentary ‘Born schizophrenic’. The documentary gave me sleepless nights. The article brought them back. I had to respond and I am thrilled that YoungMinds (@YoungMindsUK) agreed to publish it as a joint statement. This, for me, indicates that there are many of us, in all sectors fighting for better ways of thinking and talking about young people with psychological difficulties. This has gone to the Guardian in it’s entirety, I didn’t want a brief comment, that wouldn’t do our outrage and Jani any justice at all and she’s had quite enough of that.
The oversimplification and overmedicalisation of Jani was heartbreaking to read and clinically unsound as I hope to point out. No child is ‘Born Schizophrenic’, none.
Below is the statement, before I get to it I want to thank Carrie, Lucie and Sarah Brennan (CEO) at YoungMinds for their support and I hope we can continue to fight for a better future for young people experiencing emotional distress.
The article ‘My daughter the schizophrenic ’ (Guardian Weekend 19.01.13) was extremely troubling but not for the reasons which the Weekend may have intended. Whilst we support the discussion of Children’s emotional difficulties in mainstream media it is important that they are accurately represented. Jani has undoubtedly had a childhood characterised by frustration and distress, but by investing in a diagnostic label which at best is contentious and at worst damaging, the article does her and your readers little justice.
Jani’s history has been documented in other outlets including her father’s own blog, based in the USA, aspects of this, particularly in relation to familial conflict, are notable for their absence in this piece. Jani’s father talks about her having imaginary friends with whom she interacts, he talks of this as if it is a symptom of her mental illness, it is nothing of the sort. Many children create imaginary friends and interact with them, research indicates that around 8% of children ‘hear voices’ that others do not. By the end of the article, Jani’s hallucinations were still present but not bothering her. Notably there’s little evidence that they bothered her initially. They bothered her parents and professionals though. Jani’s difficulties with social communication, demonstrated in your article, are not accounted for by her diagnosis in which so much is invested. The variance of her cognitive development and her social and emotional difficulties in the context of her familial interactions are not explored in terms of her development, which reinforces the mistaken view that Jani’s difficulties can be explained by a diagnostic label lacking in clinical validity and utility which creates significant experiences of stigmatisation of those to whom it is ascribed, as last year’s report by the Schizophrenia Commission highlighted.
In addition, there are comments made in relation to the label schizophrenia which are simply untrue, such as ‘schizophrenia cannot be fixed’. People do recover from psychosis, often. Some comments are downright insulting: ‘schizophrenics are those people raving on street corners’. Although negative, these views of people with psychosis are not the focus of our concern.
There are references to clinical conclusions which are misleading. The piece makes reference to Jani’s IQ test as if this would make a diagnosis of Autistic Spectrum Disorder incorrect. Again, this is plainly wrong. People who have difficulties which place them on the Autistic Spectrum can have raised IQ levels (even if in one domain such as verbal or performance IQ), this is not a clinical abnormality. The therapist states ’mentally she’s between 10 and 11 years old’. Again, wrong, aspects of her cognitive functioning may indicate levels which would be seen more frequently in this age range but not all of her functioning, as is clearly related. This is misleading and clinically incorrect. There is no reflection on Jani’s social interactions and their importance, aside from one telling reference to her progress in hospital where ‘she loves the other girls and they love her. It’s as if she suddenly has a dozen older sisters’. Is her progress in this environment coincidental?
The consequences of this medico-centric approach is starkly highlighted by January’s medication regimen, Clozapine, Chlorpromazine (Largactil) and Lithium are extraordinarily powerful neuroleptic medications which are considered ‘last resort’ even in adults with ‘treatment resistant’ psychosis and Jani was aged only 8. Polypharmacology is poorly researched in all populations and in children the literature is sparse to inform practice. Once on such a potent mix of medication, the likelihood of her ever being able to come off them is negligible. The long term effects are simply unknown.
The emphasis in the piece appears not to be Jani’s experiences but those of her father. The title of his book is ‘January First: A Child’s Descent Into Madness And Her Father’s Struggle To Save Her’. We would respectfully suggest that Jani’s ‘descent into madness’ is not evidenced by even the basic clinical information detailed in the article. Jani’s presentation since birth seems to suggest that more neurodevelopmental factors ought to have been considered and a more biopsychosocial approach to understanding Jani , including the factors outlined above to begin with, may have reaped different results. Labels do not promote understanding, they stop us trying to understand, Jani most likely has that label for life and yet she is still a child.
Furthermore, there can be little doubt that the messianic tone of the book title sits uncomfortably. Considering his casting as saviour, there is little about Jani’s father’s interactions with his daughter, this important information is missing and there is little emphasis on what life must be like for Jani.
The reason ‘some people, even doctors, have been so unwilling to identify or believe in child-onset schizophrenia’ is simple, as a categorical, biological explanation of experience it does not exist. The label which has become the albatross around Jani’s neck (how will people talk of her this week?) is one she will find hard to cast off and the effects of the approach taken by those responsible for her care may yet have their strongest implications to come.
Whilst we accept that this was not an opinion piece and based in the USA, the material is highly sensitive and presents an image of childhood emotional well-being which is inaccurate and imbalanced and has the potential to cause anxiety and concern amongst young people and parents alike.
We expect the piece caused unease in a significant amount of those who read it and deservedly so. Jani deserves better than the treatment and support she has been given and we expect better from the Guardian and hope to see a much more balanced approach in the future.
Dr Gordon Milson Sarah Brennan
Clinical Psychologist Chief Executive
Head of Children and Young People’s Services YoungMinds
Applied Psychology Services, Bury, Lancs.