Diagnosis Shopping

The following story is fictional, but inspired by several real cases that I’ve been involved in.

A child is brought to Child and Adolescent Mental Health Services (CAMHS) by his parents. Mother is convinced he has aspergers. The child is clearly troubled, and shows signs of palpable distress. However, he shows no signs whatsoever of being on the autistic spectrum. On the contrary, he’s sociable, emotionally responsive, with no ritualistic behaviours and no sensory issues.

The school report he’s emotionally fragile, with low self-esteem. His teachers report that Mum seems very negative towards him.

The family spend some time with the family therapist. Themes emerge that Mum is strongly rejecting of the lad. She seems to be projecting something onto him, but we don’t get to find out what because Mum promptly sacks the family therapist as soon as he starts exploring that particular route.

Mum tells the consultant that he needs individual work on anger management and social skills, not this family therapy rubbish. The CPN gives him some individual sessions. For some unfathomable reason, the CPN has a habit of ensuring that Mum is in the room during the “individual therapy”. This is what is known as family therapy by stealth.

The boy is reviewed by the consultant. He’s now doing better, and there’s no evidence of mental illness or developmental disorder. Mum insists he has asperger’s, and demands a second opinion.

Another consultant provides a second opinion. No evidence of asperger’s or any other problems. Mum declares that she is outraged by this shabby treatment at the hands of the NHS.

The case is discussed in our team meeting. We feel we’ve done as much as we can. There’s nothing wrong with the boy, but Mum won’t take no for an answer. A team decision is made to discharge him from CAMHS.

As the discharge letter is being typed up, we get a phone call from the school. Mum has taken him to a child psychiatrist in private practice. After a single appointment, the private shrink has diagnosed him with asperger’s.

It seems that in a free market, even diagnoses are for sale.

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11 thoughts on “Diagnosis Shopping

  1. It is/would be indeed shocking if it were so easy to purchase the diagnosis one desires out in the private market. One can only hope that if the private practitioner did so, it was only as a temporary measure and used as a therapeutic tool to engage the mother in the therapy with her son…

    In this regard, I wonder if by temporarily playing along with the mother and saying that her son may have some issues that need addressing but that her assistance would be needed if indeed he has Asperger’s or another concern… and so her presence and participation in the next X sessions (both individually and with the son) are essential… could have been a way to get in and be able to dig deeper and untangle her projection/need for her son to be “ill.”

    • There’s things I’d be willing to do to keep a therapeutic dialogue going (such as the polite semi-fiction in the OP of “it’s individual therapy, but Mum’s joining in”). However, giving someone a diagnosis of autism when they don’t have it would be simply going too far. Not least because autistic spectrum disorders are lifelong conditions – how would you go about undiagnosing them?

      Even labels such as “oppositional defiant disorder” (aka “naughty child syndrome”) are almost never therapeutically helpful. They just reinforce a narrative that the problem is located in the child due to some inherent condition that he’s “got”.

      My experience of such cases is that there’s a real risk of iatrogenic harm simply by continuing to offer a service – “Why would he be going to a mental health service if he’s not mentally ill? Therefore he must be mentally ill and he’s the problem not us.”

  2. Pingback: Diagnosis shopping

  3. Sounds a bit like a strange sort of Munchausen-by-proxy…

    It is not at all difficult to purchase a diagnosis in the private market if you know how to respond to the standard diagnostic questions. Especially if the private market is your only option.

    If you’re willing to switch psychiatrists often enough, eventually you’ll come across someone lazy enough to just go with the easy “obvious” diagnosis. Many are willing to give a diagnosis in one 45-minute consultation.

    Others will tell you that diagnoses are unimportant, and what matters is treating symptoms, since the same drugs are used across a variety of illnesses. Not a bad approach, in general, but often not a satisfying answer.

    A handful actually take the time to help figure out what’s really going on – they are rare. If you’re feeling like hell, the odds of being persistent enough (or lucky enough) to find one of those are pretty low.

  4. I understand that dealing with a child in difficulty either as a clinician or a parent can be a very fraught process, but this post raised a few red flags for me. Obviously this post is fictional and therefore doesn’t contain all the relevant facts of every case, but I’m a little troubled that being apparently ‘sociable’ and ’emotionally responsive’ in the space of a consult is enough to definitively rule out Aspergers. It’s unfortunately the case that there is still a lot of stigmatising language around autism spectrum diagnoses both in the media and in some of the literature on the subject, which means that ‘Aspergers’ often gets consciously or semi consciously conflated with ‘unlikeable’ or ‘incapable’, even by the reasonably well informed. This means that children who might be able to express emotion or display a degree of social reciprocity within the rule orientated situation of a consult while supported by tolerant adults are considered too ‘likeable’ or ‘normal’ do be diagnosed, even if they frequently meltdown, shut down or become utterly disorientated in the chaotic school classroom and social environment where members of their peer group will not have the same patience and insight as adults who are expert in the field. It is important to consider that autistic ‘behaviours’ are not a fixed constant but are reactive to environment and situation; an individual child’s behaviour could fluctuate enormously based on how tired and stressed they are, how many sensory stressors they are encountering, how well their home and school environment has enabled them to acquire coping skills etc.

    I’m not suggesting that the family therapy route would be the wrong decision in every case, but I am asking health care professionals to please, please not assume Aspergers to be impossible on the basis of apparently good social presentation. Particularly as we get older, we are under a lot of pressure to hide our differences and hide our struggles as we learn that particular behaviours, however harmless (eg. hand flapping) result in instant strong reprisals from others. Also please bear in mind that getting from raising concern to diagnosis takes 3 or more years for 34% of people surveyed by The National Autistic society, and 1-2 years for a further 30% and during this time a child’s academic and social progress can deteriorate significantly due to lack of the right support. Parental stress, anxiety or frustration, even if it is sometimes directed inappropriately at the child in question, may therefore be a symptom of the problem rather than the cause in itself. Writing off Aspergers as a possibility on the basis of ‘likeability’ or superficially good social skills has resulted particularly in girls with Aspergers not getting the support they need, with only one fifth of girls with AS diagnosed before the age of 11 compared to half of boys with AS (again, see the NAS’s 50th Anniversary survey ‘The way we are: Autism in 2012’). Just because a child doesn’t appear to ‘have Aspergers’; doesn’t mean that any distress they display is unrelated, appearing to cope has a cost for both the child and the family.

    • Perhaps I should clarify a little regarding the link between this fictional vignette and the real-life cases that inspired it.

      In the vignette the diagnostic query is ASD, but the real-world cases have involved queries of a variety of conditions – ADHD, psychosis, bipolar disorder, personality disorder and so on. I just happened to use asperger’s as an example.

      These were cases where the family had been seen by clinicians from a variety of disciplines – psychiatry, nursing, psychology etc, sometimes over periods of many months, and found no evidence for the condition being queried. But alongside that had seen quite considerable evidence of dysfunctional family dynamics.

      I should also state that I personally don’t equate aspergers with being unlikeable or incapable. Some of the most likeable and interesting people I know are on the autistic spectrum.

  5. Thanks for the clarification! I only responded because I often feel that the process of labelling some one with ‘Aspergers’ either colloquially or clinically places too much emphasis on social presentation on a particular day in a particular and often artificial situation, and not enough on practical difficulties, self reported problems and, as you very rightly point out, the situations which the individual with Aspergers is expected to cope with. I also agree with your point that diagnosis, even when accurate, can result in the projected cause of problems being inaccurately located in the person with the diagnosis and not in their family difficulties, lack of adequate support etc.

    I’m very glad that you’re raising the problem of people with any diagnosis or none being stigmatised or otherwise subjected to inappropriate interventions in order to serve the interests of family members and caregivers, I just wanted to add the caveat that Aspergers is often missed in diagnosis, particularly in children who do not immediately present with markedly idiosyncratic social skills, which is somewhat beside your point. Thanks for letting me make the point anyway!

  6. I agree that diagnosis shopping is a real issue. Often it is so much easier for parents and professionals alike to locate the problem in the child rather than the adults. A diagnosis of Reactive Attachment Disorder has often been misused in this way.

  7. This is a very common problem for Local Authorities – but firstly it needs to be made clear that the NHS is sometimes wrong. Psychologists, Paediatricians within the NHS, Ed Psychologists within the LA are always gatekeeper to scarce resources as well as the professional who diagnoses, and just in case someone makes this a party political point, resources are always scarce, or at least they have been since the mid-1970’s. Public sector professionals also have an agenda, this is not just the preserve of the private sector.

    There has always been a school of thought in social work against diagnosis, particularly mental health diagnosis, for fear of stigmatising the child; but as resources are dependent upon diagnosis, this has often been detrimental to children in care.

    Finally there is a serious child protection issue here, for different reasons parent’s from across the social spectrum will impose mental health, behavioural and physical impediments upon their children to get what they want; with the poorer end of the spectrum it is often disability benefits, but the middle class are worse, often expecting significant housing extensions to be paid for by the LA. I am aware of one case where a middle class family endangered their non-Asperger’s children to attempt to force the LA to provide the housing extension, (and there were alternative arrangments within the house, that would have protected their children). There is currently a case in an LA near to me where the parents obstructed the intellectual development of their child to secure benefits; once made subject to a care order by the courts the child has emotionally and intellectually made several years progress in one academic year.

    In terms of adoption and fostering practice, social workers are discouraged from using the term Attachment Disorder, unless the medical profession has made such a diagnosis, though I accept that it was used as a descriptive term for many years without diagnosis. However for a number of reasons, one of which would be to protect medical resources,it is the most likely diagnosis to be made, if a diagnosis is made at all.

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