Diagnostic Labels for Children; Their Advantages and Disadvantages
Written by Christine Bennett - 18th May 2022
My Child Has A Diagnosis At Last; That’s Great, Isn’t It?
Most adults with a child who is seen as being problematically different from others of the same age, on the basis of their thinking and behaviour, are very keen to receive an answer to the mystery of what is going on and for the child to receive help of some sort. They quickly learn that, in the UK at the present time, a medical diagnostic label must be obtained before any help with education is provided. When assessment has led to a diagnostic label, an Education Health and Care Plan (EHC) can be created for the child. This entitles the child to specific personalised support in education up to the age of twenty-five and may also lead to payments for clothes and other items needed for the child’s care at home. These adults might not have considered what the diagnosis is based on or notice that diagnostic labels appear and disappear or change over time. The answer to the question of where diagnostic labels come from in the UK is the ICD, The World Health Organisation (WHO) Classification of Mental and Behavioural Disorders.
The ICD (International Classification of Diseases)
At the time of writing (May 2022), we are at a point of change from the ICD-10 (the 10th edition of the ICD) to the 11th edition, the ICD-11. The mental health classification system in the ICD forms a part of a larger system of diagnostic categories, that cover physical illness, and which are created and revised by the WHO and used in the UK and in various other countries (the classification system is published in a range of languages).
The categories and subcategories are used for insurance coding purposes, for statistical tracking of illnesses and as a global health categorisation tool. When you visit your GP, you may have noticed the computer “drop down” menu they use to indicate your diagnosis on your computerised record or when referring you to a consultant. Each block of medical conditions in the ICD contains the code and the diagnostic criteria for individual disorders and their subcategories, along with introductory explanations and notes on making a diagnosis. The change over to the ICD-11 is unlikely to be fully implemented before 2027. Presently at the start of its development is an accompanying “Blue Book” with expanded definitions and diagnostic criteria.
The wording of a current ICD can lag behind the terminology used by individuals who work in health care. For example, the change from “mental retardation” to ‘disorders of intellectual development’ is made in the ICD-11 (details of the criteria published online in January 2022), but “mental retardation” is a term that people have seen as inappropriate for some time. The changes made in ICD-11 that relate to child mental health are few and relate largely to terminology.
In the USA, and some other countries, the DSM of the American Psychiatric Association is used instead, and is actually seen as more influential, although there are many similarities between the two systems and a cross referencing code is available. Some UK health insurance providers use the American system rather than the WHO system.
The DSM-5, which has been heavily criticised by psychiatrists and others for the wide range of behaviours labelled as illness, contains 400 diagnostic labels. Diagnostic labels are particularly important in the USA in respect of health insurance policies; there is no health insurance pay out without an actual diagnosis. This is not an issue with the NHS, which provides assessment and treatment for free even when diagnosis has not been possible. In the UK, caregivers’ unhappy wait for assessment leading to a diagnostic label for a child is usually focused on the Education Health and Care Plan, the resultant specified support that the education system must ensure.
Other Advantages of a Diagnostic Label
Most adults are delighted when a child whose behaviour has caused distress and upheaval within the family and in school, receives a diagnostic label and this is not just because of the Education Health and Care Plan. Johnstone (2014) lists the positive reactions of adults to receiving their own diagnostic label as:
· Relief at knowing “what is wrong”.
· Hope for treatment
· Having your distress recognised
· Freedom from blame and guilt
· A route to information and support
· Access to financial benefits
· Experience as a patient is easier
These same benefits would also apply to adults whose children receive a diagnostic label.
Does diagnostic labelling also have advantages for mental health care professionals? I think it does:
· There is an assumption of a shared understanding and acceptance across professions and agencies of what each diagnostic label entails. There is often no need to also pass on details of the individual’s history or the specific manifestation of the illness, thus preserving confidentiality to some degree.
· Acceptance of the diagnosis by the individual and/or their family usually goes hand in hand with acceptance of the role of patient. The authority and expertise of the professional is not questioned beyond a certain level, and perhaps never, by the patient and the patient’s family. The professional finds interactions are less challenging as their expertise is not questioned. Although patients who are “experts by experience” might be invited to share their opinions and experiences in training events, research studies and consultation events, the power remains in the hands of the professionals.
· The diagnostic labels included in ICD provide a framework for the content of many textbooks about psychiatric conditions and their treatment via medication and other medical and care interventions. Likewise, the labels and their associated codes enable information gathering systems for research and statistical purposes.
What About The Disadvantages of a Diagnostic Label
Does all of this sound fine? Many worried and exhausted caregivers would think so, but there are some issues that are worth thinking about.
The “medical model” of mental illness refers to a response to mental illness that takes the same form as a response to physical illness, and which is heavily biased towards treatment by prescribed drugs (although other physical responses to mental illness are thankfully a thing of the past). This is in opposition to the social model of mental illness, where causes are seen as the socioeconomic, cultural and environmental conditions that affect the individual, and the response is to make changes to those conditions. There has been much research into the social factors (e.g. poverty, discrimination, unemployment, poor housing, loneliness and isolation) and relational factors (e.g. domestic violence, rape, sexual, physical and emotional abuse, bullying and victimisation, bereavement and loss) that relate to mental illness.
While it is perfectly possible to work with mental illness using the social model alone, the medical model is very prominent in the UK, with social responses such as counselling, play therapy, and specialist schools and residential centres, being seen only as occasional additions to the diagnosis, hospital-based care and prescribed drugs approach. There are some glimpses of a different attitude, however. The Anti-Psychiatry movement started in the 1960s by psychiatrist R.D. Laing has never gone away. An organisation called NESTA (www.nesta.org.uk) promotes social responses in the UK, and the British Psychological Society (BPS) has published guidance and training materials with regards to the “Power Threat Framework”, which are available on their website (www.bps.org.uk). The Power Threat Framework is an alternative to the medical model that has been explored over several years by a BPS committee and which is also detailed in a book by committee members Boyle and Johnstone (2020). The ”Drop the Disorder” movement, under the lead of Jo Watson (2019), runs workshops and Facebook groups for anyone concerned about the effect of diagnostic labelling. The psychiatrist Rachel Freeth (e.g. 2007, 2020) additionally trained as a person-centred counsellor and has written books and articles aimed at counsellors, with the aim of helping them understand psychiatric diagnosis, the concepts and issues within psychiatry and diagnosis, and perhaps more importantly, she has written about the person-centred counselling to raise psychiatrists’ awareness of alternatives to the medical model.
Observations From a Counsellor
As a counsellor who has worked with adults, couples, children and young people, I feel that “freedom from blame and guilt” from the list of advantages above is of particular relevance. If a child has a recognised medical condition, then caregivers are less likely to feel or even begin to consider that the child’s behaviour is caused by the way in which they have been raised or adverse childhood experiences (ACEs) that the child has been exposed to, some of which, might be directly caused by the caregivers’ actions. Certainly, many of the child clients I see, have caregivers who do not recognise that their own behaviour might be influencing the child and I appreciate the objective, research nature of the ACE literature (see the reading list below) as a basis for discussion with caregivers.
As a nation, we have become progressively more familiar and more comfortable with diagnostic labels, as these are shared with NHS patients more freely. When I first started working with counselling clients in 1998, (adult) clients would explain that, for example, they had lost interest in everything they used to enjoy, they felt unhappy, they could only see the bad in themselves, the bad in everything. Now clients say they have “anxiety and depression”, but what they are thinking and feeling is not identical to the thinking and feeling of others with the same label. Clients also self-diagnose and diagnose their friends and relatives, saying “He’s on the spectrum” or “She’s got a narcissistic personality, on the basis of a video they have seen on YouTube. The follow on from this is the thought “Why work on improving that relationship?” and “Why consider what I bring to the relationship, which might help create the problem?”.
A concept within the world of person-centred counselling is “Medicalisation of Distress”, a concept written about by Pete Sanders (e.g. in Watson 2019). This relates to the idea that the responses listed as mental illnesses in the diagnostic manuals are natural and normal responses to life events such as trauma, bereavement, loss and abuse.
Observations From a Key Figure in the Work on The Disadvantages of Diagnostic Labels
Lucy Johnstone (2014) makes a range of interesting points about diagnostic labels. For instance:
Having a psychiatric diagnosis becomes part of the self-concept, how we see ourselves and, also, the diagnosis becomes part of how others see us. Thus, all our relationships and all activities in our working life and in our social life are influenced. The “patient” is forced into a sick role, their life experiences not listened to or seen as part of the illness. Social perceptions of mental illness mean that they are seen as not responsible for their own actions and that they are dependent on others for their care. Interactions with professionals might be limited to answering specific questions related to the diagnostic label, the “patient” might experience discrimination in the workplace by neighbours and be treated differently by family and friends. The “patient” may experience shame, a loss of their sense of self, hopelessness and despair, humiliation, social isolation, and fear.
Mental illnesses are not illnesses in the same way that physical illnesses are, although we are encouraged to see them as such. This attitude usually comes with good intentions of reducing the fear and stigma around mental illness and can often be seen in public health articles and advertising, and the move in the past to shut down the large Victorian asylums and bring psychiatric care into general hospitals. While we might talk about “chemical imbalances” and genetic susceptibility (where an inherited tendency to a mental illness is activated by life stresses), there is little actual evidence for this similarity to physical illness, however.
While physical illness has “signs” and “symptoms”, mental illness only has “symptoms”. Signs are the measurable physical indicators of illness, detectable by blood tests, X-rays and scans and which are measured in the same way in each country. There are no such physical indicators in mental illness, although there may be changes resulting from it, such as weight loss due to not eating (dementia is a physical illness, although it tends to be seen as a mental illness and there are physical changes to the brain and body caused by experiences of suffering and trauma that have psychological effects). Psychiatrists diagnose on the basis of symptoms alone and the identification of these symptoms is very much a subjective thing. What are considered to be abnormal thoughts, feelings and behaviours will vary from one culture to another, although the IDC does try to address this to some extent. The importance of social judgements in psychiatric diagnosis is hidden by the language of the IDC and the medical model (patient, treatment plan, signs, symptoms, case, prognosis etc). The subjective nature of diagnosis also explains why individuals can acquire a range of diagnostic labels over time after being seen by several different psychiatrists, as research has shown that psychiatrists disagree about the diagnostic label to use in 50% of cases used in research. Subcategories of diagnostic labels, linking two conditions together have been created in the IDC to address this issue.
Research into specific symptoms of mental illness has been better at identifying effective responses than research based on diagnostic labels. For example, research on hearing voices (www.intervoiceonline.org).
Prescribed Medication
Prescribed drug dependency goes hand in hand with the medical model and there is greater awareness of this issue for both the well-being of individuals and the financial costs to the NHS. The Royal college of Psychiatrists (www.rcpsych.ac.uk) has published information for patients on stopping anti-depressant use. This includes a long list of the symptoms of anti-depressant withdrawal (which unfortunately are often misidentified as the depression coming back). A House of Commons committee, along with the three major counselling professional bodies, the British Psychological Association and other agencies, have produced “A Short Guide to What Every Psychological Therapist Should Know About Working with Prescribed Drugs” (2020). Again, the focus of the publication is on supporting withdrawal.
Davies (e.g. in Watson 2019) writes about the interplay between the use of diagnostic labels and the sale of medication by the big pharmaceutical companies; “Big Pharma” has a strong interest in the dominance and long life of the medical model.
Expert Decisions?
All accounts of activity on the ICD-11 that stem from WHO, stress the number of experts working on the revision, from 2007 in respect of this edition. Over 300 specialists from 55 countries were divided into 30 working groups and there were many other ideas put forward by medics across the world. This amount of expertise, which mainly relates to physical health categorisation, sounds reassuring, but there have been some interesting revelations in respect of the psychiatric working groups; that they are creating classifications that have to be applied in a subjective manner, and include no physical signs that can be tested, has already been stated.
Dr Allen Frances, a DSM-IV committee member (in Watson 2019) states that “there is no reason to believe that DSM is safe or scientific”. Jane Davies (in Watson 2019) interviewed members of the DSM committee; one said “the meetings were like a group of friends deciding where they were going to go for dinner”. Professor of psychology Paula Caplan, who now hosts the anti- diagnosis website (psychdiagnosis.weebly.com), also served in the group working on the revision of the DSM-IV. She resigned after finding the process of creating psychiatric categories “extremely unscientific” and, once a diagnostic label is applied to an individual, likely to lead to bias and subjectivity. Caplan has a research background and was to carry out research into individuals’ experiences after receiving a diagnostic label. She found that the range of support given once a label is applied, narrows down to medication and psychotherapy, and she concludes “psychiatric diagnosis is first cause of everything bad that happens in the mental health system”.
Although the vast bulk of research and comment with regard to diagnostic labels relates to adults, the authors state that it applies equally to children. Caregivers are forced to comply with the medical model, if they want their child to have support in school but, I believe, they need to have an understanding of the negative implications of that model and an awareness of the potential sources of information and support for times when they have other battles to fight.
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References and Further Reading:
Boyle, Mary and Johnstone, Lucy: The Power Threat Meaning Framework; An Alternative to Psychiatric Diagnosis, PCCS Books 2020
Bond, Jan: “An Introduction to Adverse Childhood Experiences”, Public Health England 2018
BPS: “The Power Threat Meaning Framework”, The British Psychological society 2018
Freeth, Rachel: “Humanising Psychiatry and Mental Health Care; The Challenge of the Person-Centred Approach”, Radcliffe publishing 2007
Freeth, Rachel: Psychiatry and Mental Health; A Guide for Counsellors and Psychotherapists”, PCCS Books 2020
Goldacre, Ben: “Bad Pharma; how Drug companies mislead Doctors and Harm Patients”, Fourth Estate (2012)
Goodman, Robert and Stephen Scott: “Child Psychiatry”, Blackwell Publishing 2005 (2nd ed.)
Johnstone, Lucy: “A Straight Talking Introduction to Psychiatric Diagnosis”, PCCS Books 2014
Moncrieff, Joana: “A Straight Talking Introduction to Psychiatric Drugs; The Truth About How They Work and How to Come off Them”, PCCS Books 2020 (2nd ed.)
Read, John: “A Straight Talking Introduction to The Causes of Mental Illness”, PCCS Books 2010
Timimi, Sami: “A Straight Talking Introduction to Children’s mental Health Problems”, PCCS Books 2009
Watson, Jo (Ed.): “Drop the Disorder! Challenging the Culture of Psychiatric Diagnosis”, PCCS Books 2019
WHO: “A Pocket Guide To The ICD-10 Classification of Mental and Behavioural Disorders With Glossary and Diagnostic Criteria for Research” The World Health Organisation, Churchill Livingstone 1994
Council for Evidence Based Psychiatry: “A Short Guide to What Every Psychological Therapist Should Know About Working with Prescribed Drugs”, 2020
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Christine Bennett is a practicing counsellor and counselling supervisor, based in the North West of England and working with adult clients, couples and children and young people. She spent 18 years as an external quality assurer and chief quality assurer for NCFE and has taught in further education from 1990, delivering counselling, psychology and mental health courses. She is a former psychiatric nurse and holds a BSc. in psychology, an MSc. in Counselling Studies and a postgraduate teaching qualification. Christine is director of education for Birchwood Counselling in West Lancashire.