The Difference a Diagnosis Makes

Sunmum lives in the UK with her husband. Two of her children have at times identified as non-binary/trans.

This year’s European Professional Association for Transgender Health (EPATH 17) conference included a presentation on ‘Misdiagnosing Gender Dysphoria in Adolescents: 5 Case Studies’:

Background

Five adolescents ages 13-15 all presenting with Gender Dysphoria were misdiagnosed by other clinicians (as Borderline Personality Disorder, Autism, Schizophrenia, or Bipolar Disorder). This study reviews their case histories and how Gender Dysphoria went undiagnosed until it was clinically accessed and the importance of differential diagnosis has with patient outcomes.

That interested me, because it was relevant to the differential diagnoses offered to two of my kids.

Diagnosis, in the area of mental health, is complex and controversial.  Diagnosis determines the allocation of resources in public health systems, and it enables access to therapies. It also materially affects the outcome for patients. David Bathory’s presentation to EPATH 17 uses ‘DSM V criteria and ICD11 criteria for Gender Dsyphoria’. (Let’s be kind: typos happen). DSM V is ‘the standard classification of mental disorders used by mental health professionals in the United States’ and it determines the diagnosis for gender dysphoria in adolescents and adults:

In adolescents and adults gender dysphoria diagnosis involves a difference between one’s experienced/expressed gender and assigned gender, and significant distress or problems functioning. It lasts at least six months and is shown by at least two of the following:

  1. A marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics
  2. A strong desire to be rid of one’s primary and/or secondary sex characteristics
  3. A strong desire for the primary and/or secondary sex characteristics of the other gender
  4. A strong desire to be of the other gender
  5. A strong desire to be treated as the other gender
  6. A strong conviction that one has the typical feelings and reactions of the other gender

As the words I have italicised indicate, ‘gender dysphoria’ is diagnosed through experiences, desires, and convictions relating to ‘the typical feelings and reactions of the other gender’. The clinician must understand the patient’s subjective experience in relation to a perception of gender typicality.

Now the DSM carries authority. It is ‘the product of more than 10 years of effort by hundreds of international experts in all aspects of mental health. Their dedication and hard work have yielded an authoritative volume that defines and classifies mental disorders in order to improve diagnoses, treatment, and research.’  These are the boxes into which clinicians place the many and varied manifestations of human distress. But these boxes, these labels, also change. Since DSM V was issued in 2013, it has been repeatedly updated.

From age 13 to 19, my daughter explored the gamut of female teenage problems, testing her poor mother to the limit, and accumulating diagnoses as if her ambition was to try out the whole of the The Diagnostic and Statistical Manual of Mental Disorders (DSM–5), or in her case, since we are based in the UK, the ICD-10 (the International Statistical Classification of Diseases and Related Health Problems).  I was curious, then, to know how the presenter, David Bathory, knew that ‘gender dysphoria’ was the correct diagnosis.

  1. Eating disorder

It started when my daughter was 13 with an eating disorder, a diagnosis which carries a strong association with suicidality. According to a 2014 study ‘rates of mortality, and specifically rates of suicide, are undeniably high in ED populations, as are the rates of self-harm’. Approximately ‘one-third of women with a diagnosis of BN [Bulimia Nervosa] ‘have had at least one suicide attempt.’ The GP responded quickly and referred her to a specialist NHS eating disorder unit where she had individual therapy. It was described as an ‘atypical eating disorder’ because she was not underweight (though bulimic, and obsessed). I was surprised that she had insisted on going to the doctor. I wondered whether there wasn’t an element of social contagion since her best friend at school had a serious eating disorder and had received in-patient treatment.  A teacher at her single sex school confided that over 50% of the girls in her year had eating disorders. Therapy seemed to work: the therapist explained that eating disorders arise in a large proportion of people after dieting since diets themselves  trigger eating disorders. She was given an eating plan and encouraged to eat small, sensible regular meals. She got better.

  1. Mood disorder

But then in her GCSE year, aged 15, she started to self harm and to talk to her therapist about suicidal feelings and intentions. There were symptoms that sounded like psychosis. She thought she had schizophrenia and though her therapist was unconvinced, there was a plan to take her in for observation after her exams finished. In the meantime, she was diagnosed with a mood disorder and offered CBT. But shortly after her first session she made a serious suicide attempt and spent a week in hospital.

  1. Personality disorder

She was then admitted as a psychiatric in-patient and was reassessed. The diagnosis this time was borderline personality disorder, a diagnosis defined by suicidality:

Suicidality is a defining feature of borderline personality disorder (BPD). It is also the feature that creates the most anxiety among those who treat patients with this disorder. It is rare to find patients with BPD who have never shown any suicidal behavior. As described in criterion 5 in DSM-IV-TR,1 these patients are characterized by “recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior.” Suicidal ideas and threats are ubiquitous, and most patients make multiple suicide attempts.2 Suicidality in patients with BPD is chronic and can continue for extended periods (months to years).3,4

 She was immensely relieved that her unhappiness had a cause and a label. At last she was being taken seriously. But I thought that the diagnosis seemed to make her worse: she went online, researched BPD and quickly completed the set of symptoms: self-harm, screaming, staying at home and refusing to go to school. It’s a tough diagnosis for the parent as well: BPD (a quick google confirms) is associated with parental neglect and sexual abuse. I thought that the stigmatizing label completed her self-loathing. But the diagnosis did give her access to Dialectical Behaviour Therapy, and after a first failed attempt to engage with the programme, and another few months seeing a psychiatrist with no empathy to whom she refused to talk, she entered a programme which made absolute sense to me, a programme based on self-acceptance and the desire for change. Dialectical Behaviour Therapy was created by Marsha Linehan, a therapist who herself suffered from extreme suicidality as a young person. In one study, its efficacy was tested on:

‘One hundred one clinically referred women with recent suicidal and self-injurious behaviors meeting DSM-IV criteria, matched to condition on age, suicide attempt history, negative prognostic indication, and number of lifetime intentional self-injuries and psychiatric hospitalizations’

Despite resisting the best efforts of the endlessly patient therapists, she was offered skills to teach self-acceptance, coping skills for strong emotions. The six month parent and carer psycho-education course seemed eminently sensible, teaching me skills that everyone needs: meditation and mindfulness, tree hugging, supporting children with strong emotions, what self harm means. Best of all, I discovered that the other parents were both desperate and likeable. We were not the unsupportive monster parents that the diagnosis seemed to suggest. The only thing that I could fault in the programme – perhaps inevitable with mental health professionals who see young people at their very lowest – was a lack of ambition. They didn’t seem to expect much of my daughter.

  1. Gender dysphoria

Returning from her individual therapy one day, my daughter dropped in at the local sports shop and bought herself two sports bras that were clearly much too small for her. She had left school after GCSEs, signed out of Facebook, stopped seeing her loyal friends and now, a whole year later, was staying in her room and studying Youtube. When I commented that the sports bras looked a bit uncomfortable, she explained that she was Gender Non-Binary. I didn’t take this seriously: as far as I could see, we are all gender non-binary, though those sports bras did look uncomfortable. I could see that her self-esteem was at a low point, and she had given up all exercise and social life, so I didn’t say anything about it or comment on this new label.

  1. Autism

Around this time, she decided she was autistic. She particularly liked https://musingsofanaspie.com/. She started rocking back and forth at the table (behavior I learned to call ‘stimming’). Her therapist suspected that quite a few of the BPD kids she was seeing might really be autistic and put her down for an autism assessment. The appointment took some time and in the meantime, she had become a great deal better and the BPD diagnosis had been removed. Her self harm had stopped and she was noticeably calmer.

The autism service offered an extremely thorough and lengthy diagnostic procedure. Half a day with my daughter followed by a three-hour structured telephone interview with me focusing on her behavior at age 3-4 and around 10.  At the end of this she was told that she wasn’t autistic but probably did have Borderline Personality Disorder.

Almost immediately she became worse: she had wanted the autism diagnosis (which did not seem stigmatizing to her) and as soon as the personality disorder diagnosis was re-imposed, she immediately became unstable and miserable. The impact of a diagnostic label on her sense of self was dramatic.

  1. Recovery

What cured her, in the end, was an Access course: a wonderful teacher believed in her and encouraged her to apply to university. That summer, on a particularly hot day, I suggested we should see if we could find her something more comfortable to wear. She agreed and gender non-binary joined the dustbin of discarded identities. At university tutors thought she was a brilliant: now she simply has an ‘artistic temperament’ and is friends with other odd girls who love their course and want to spend time reading in the library.

Diagnosis and its discontents

How then do we know which is the right diagnosis? How do we know (in the cases presented to EPATH) that ‘Borderline Personality Disorder, Autism, Schizophrenia, or Bipolar Disorder’ were the wrong diagnoses?

Well the occasion gives us a clue: at a conference on transgender health, we are going to discover that transgender is the relevant explanatory term.  The autism service showed the rare ability NOT to diagnose its own specialism but all the other services applied the label they were formed to dispense: eating disorder was the diagnosis of the eating disorder service, mood disorder of the mood disorder service, BPD of the DBT service. Family therapy (which also helped us) assumes that the answer lies in the family. As our GP said to me: ‘That’s the danger of the specialist service: you send a patient with an advanced facial cancer to the irritable bowel service and all they can see is the irritable bowel’. The university tutor diagnosed her as a hardworking student.

Diagnosis, of course, has its critics. Speaking in 2013 just before the release of DSM-5, consultant clinical psychologist Lucy Johnstone offered a fundamental challenge to the use of diagnostic labels, arguing that it is ‘unhelpful to see mental health issues as illnesses with biological causes’. According to Johnstone ‘there is now overwhelming evidence that people break down as a result of a complex mix of social and psychological circumstances – bereavement and loss, poverty and discrimination, trauma and abuse’.

As a parent, I know that ‘a complex mix of social and psychological circumstances’ can sound all too much like ‘the family’. But my daughter’s recovery shows that – with good support – even protracted and disabling mental illness can enable a new understanding. Although we want to shield our children from pain, ‘dysphoria’ – unhappiness – is part of the human condition.

Mental illness certainly exists and it is devastating. It is only when we acknowledge that mental illness exists that we can challenge the stigma it carries. To claim that gender dysphoria is not a pathology is to succumb to this stigma, not to challenge it.

As Lucy Johnstone says, ‘people break down’. But the labels we apply are only ever pragmatic categories formed to allow access to therapy. And these labels can themselves do harm, becoming an identity for the person to whom they are applied. Within the DBT service, therapists reminded the young people that they were not the illness. Despite the horrible term ‘personality disorder’ there was not something irretrievably wrong with their inner, unchangeable selves. They were suffering through patterns of feeling and behaviour which they could change. They learned coping strategies, ways of self-soothing, of understanding and labelling their feelings. They were taught that self-harm and suicidality are not the only ways of responding to pain. They were taught to accept their bodies, to focus instead on what they could do, what they could achieve.

And if diagnosis is fundamentally dangerous, it is never more so than when it is self-diagnosis by Google, echoed by medical professionals who dispense irreversible physical interventions for feelings and beliefs. I still shake with horror at what might have happened if my daughter had said the word ‘gender’ to the GP. I know what would have happened because my son, perhaps envying her the intensive focus of parents and professionals, did just that.

For this reason, I can’t accept the premise of virtually all discussion of teenage gender dysphoria: that physical treatments are mandatory because of the risk of suicide. Every diagnosis my daughter received was associated with suicide, from eating disorder, to mood disorder, to BPD. I know the overwhelming fear experienced by parents, a fear that stops you sleeping, from which you are never free.  But in the case of my daughter, suicidality itself was the problem, a response to pain that she could learn to replace by other safer techniques.

Suicide is not uniquely associated with gender dysphoria. Nor is dysphoria uniquely or strikingly associated with gender. In the end, we are simply talking about unhappiness, manifested in the varied forms created by the culture in which we live. For my daughter, the most powerful cure came from literature which showed her that pain is universal, and that consciousness is an intense experience. She recovered when she was valued for what she could do with her brain.

 

 

 

2 thoughts on “The Difference a Diagnosis Makes

  1. Isnt, perhaps, one of the problems today, not ‘parental abuse’, but “parental over-involvement”? I have been noticing the enormous difference in the reading books for kids in the 70s and now. Although the 70s kids were gendered stereotypically (the girls gather flowers, the boys build boats) both sexes were left to explore the world themselves…and also given responsibilities for themselves and younger kids. They come back when the sun goes down. The modern world is NOT more dangerous than the 70s: this was whipped up by the tabloids. Its actually safer. What paedophile would risk snatching a middle-class kid, when they can get a plane to Indonesia?

    The modern Kipper books show children who are simply never left alone. When they want to make a scarecrow, or a dragon, or repair old toys: “Mum/Dad helped them” or even took the whole project over when the original fails. Its a family thing: but clearly, the kids arent allowed to build a go-kart alone. they aren’t permitted to use power tools…but Peter and Bob do: they are shown using a drill to build their boats, then sailing them on the river. The Kipper kids cannot even go to the park in a large group, even though the oldest, Wilma, is almost a teenager. Mum and Dad supervise everything.

    I see a mother playing with her little one with blocks. Instead of just watching, she takes every opportunity to turn it into a ‘learning experience”. “Which is the blue one, Natalie? Oh well done! and the yellow?” It never stops: the constant flow of ‘stimulation”.

    But its when you are left alone to play that you develop your inner life. And learning to handle power tools develops skills: and skills give you self-esteem. How can a child feel good about something “Mummy and me” did” (Mummy and I, Natalie!). You know damn well, its Mummy who did it. And the endless noise stops the kid developing imagination. do they even have imaginary friends, now? How would they have the time…or the quiet?

    And then there’s all the protection against pain. Bike helmets, maybe. But stabilisers, knee pads, elbow pads, for God’s sake. How do they learn endurance? And then there’s the constant attention to their demands….in the 70s, there was a set of PIFs called “Charlie Says…Charlie was a cat who gave good advice. here’s the kid, Charlie’s owner…some other kids ask him to a picnic and he’s about to go but “mrow-wow-wow-wow”: Translation: “Charlie says: “dont go anywhere without asking Mummy!” So the kid goes to the door where Mummy is talking to a tradesman, and tries to get her attention. But kids are taught to wait, til grown-ups have finished…and by the time she has, the others have left. Does the kid pitch a screaming fit? Did he run off anyway? No: Mummy congratulated him on his patience and good behaviour and took him out with Charlie. I thought of the kids who come up now as I talk to their mums and who don’t even say “Excuse me, Mummy…”. They just interrupt, and Mum attends at once. How do they learn patience now? How do they learn rules, order, a strong place in the pecking order…how you move up through it?

    Everything is a terrible mixture of the fluid and the over-organized. What’s loose should be tight…kids shouldnt be ordering grown-ups how to behave! “Mummy, come and play puzzles!” “Get out of my room!” And what’s tight should be loose…kids should be left alone to develop. Show them how to use tools and then let them do it!

    It’s no wonder they have such shaky identities. They aren;t being raised, they are being moulded and hot-housed. Remember the Tiger Mother? her first kid didnt mind the forcing, seems to have been born with a strong ability to stand things…but the second kid was clearly going mad. The scene where she cut off all her hair was really chilling…yet mother continued!

    Liked by 3 people

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