Labels, particularly psychiatric labels, tend to come with a large amount of baggage. They’re regarded as pejorative, they often stay on your medical record permanently and they can be source of discrimination and stigma.
I’m going to discuss this in the context of a young lad with Aspergers Syndrome. We’ll call him Edmund.
Edmund blatantly has Aspergers. He’s got it all. The abysmal social skills, the lack of empathy, lack of eye contact, the obsessional behaviours, the ultra-geeky hobbies, the clumsy gait, great at science and maths, rubbish at creative writing and sports…if you tried to draw a pen picture of what somebody with Aspergers is like, you’d wind up with someone like Edmund. If he were any more stereotypically Asperger-esque, he’d be Lt Spock.
As diagnoses go, this should be something of a no-brainer. At this point the consultant raises the question, “Okay, we can diagnose him with Aspergers, but should we?” His point is that there’s no treatment as such for Aspergers. We can do a bit of social skills training with him - getting him to rote-learn facial expressions and so on - but this doesn’t do anything to actually treat the core condition, and its impact is very limited. So, if we diagnose him, what are we actually achieving other than to slap a label on him that would become part of his medical record for the rest of his life?
We decide for the time being not to make a formal diagnosis, and just work with Edmund and his family to get a good idea if he’s having problems at home or at school that we could work with. I start meeting regularly with Edmund and his parents. While I’m doing so, I steadily notice a change in the attitude of the parents.
Although we haven’t made a diagnosis, we’ve discussed the possibility of Aspergers with the family. Mum and Dad have since started looking up the condition on the Internet, getting books out from the library…and suddenly their view of Edmund’s behaviour changes from “it’s because he’s weird and uncaring” to “it’s because he’s got Aspergers Syndrome”. All those aspects of him that they were finding distressing cease to be about him per se but an aspect of a condition. In psychotherapy speak this is referred to as “externalising”. RD Laing fans of the mental-illness-as-state-of-self-and-being-in-the-world ethos will blanche at that concept, but it’s massively improved the relationship between Edmund and his parents.
The question of whether or not to formally diagnose is abruptly resolved when I phone the school and speak to Edmund’s teacher. I mention that Edmund may have Aspergers. “Hmmm, that would explain a few things”, muses the teacher. I casually ask her what extra support the school could offer Edmund, and whether he’d need a formal diagnosis in order to get such support. She ums and ahs before telling me she’ll speak to the school Special Educational Needs Coordinator and get back to me.
A bit later, she phones back. “Right, I’ve spoken to the SENCO,” she says, “She’s told me that we have access to a specialist Autistic Spectrum Disorder teacher, who will work to support both Edmund and his teachers. She’ll distribute information packs to all of his teachers so they’re more aware of his condition. He’ll also receive extra support both in exams and coursework. But in order to put all this into place, we’ll need a consultant psychiatrist to write to us with a formal diagnosis.”
I relay all this to the consultant. In the light of this, he agrees to carry out an ADOS, the diagnostic test for autistic disorders. Edmund is going to get his diagnosis.
There’s a bit of a weird paradox to all this, in that we’re giving him a medical diagnosis for an educational intervention. The social worker on our team opines that it might have been better if we had been able to give simply a statement of needs rather than a psychiatric diagnosis. Then again, if the purpose of a diagnosis is to point the way to an intervention, then arguably it’s doing what it’s supposed to. It’s just that the intervention won’t be by us.
And as the relationship between Edmund and his parents show, labelling can have positive social impacts as well as negative.
Discuss.
Tags: antipsychiatry, asperger syndrome, labelling
11 comments
March 5, 2008 at 11:14 pm
TheShrink
Labelling can be unhelpful since it can generate preconceptions of how someone and their entire life will be. I know a few Consultant colleagues who do not diagnose schizophrenia. Their take on it is that, then, people will view their patient as having schizophrenia and not see past this. They instead diagnose F23.0 or F23.1 (acute polymorphic psychotic disorder with/without symptoms of schizophrenia) or F22.0 delusional disorder.
They see this as very important. As one tritely said, “Schizophrenia is for life, not just for Christmas.”
This matters since rather than having a condition forever (which, at best, is in remission) by saying they’ve had F23 acute polymorphic psychotic disorder there’s opportunity for recovery, resolution, normality. Their spin on it : you have episodes of psychosis or deficit but they can pass.
For me, I like specific diagnosis for a few reasons.
1) You can get the right treatment. Dementia = loss of memory, personality, function then death. Alzheimer’s disease = medication and maintaining stability for, on average, over 2 years. Much better.
2) It’s honest. Have the courage of our convictions to look it in the eye and call it what it is.
3) It allows future care to fall in to place. If I call something memory problems (not Lewy Body dementia) how do I explain the incontinence, poor swallowing, hallucinations and violence when they’ve naught to do with memory? If I call something a delusional disorder (not schizophrenia) how do I explain the avolition, apathy, withdrawl, bradyphrenia and other negative symptoms? A true diagnosis lets you talk about what’s really going on and prognosis/what’s likely to go on.
As you say, I’ve known many many folk feel so much better for hearing a diagnosis. “Ah, so that’s what’s wrong.” For some people even if there’s no treatment, the switch from living with uncertainty to having a tangible answer can facilitate acceptance and coping.
Thus, labels can give permission to be ill, can enable folk to get the right treatment, can be a useful shorthand amongst professionals, can allow honest discussion about the future/explain changes as they emerge over time and can help folk cope.
Me likes.
March 6, 2008 at 8:35 am
beakie
I agree with The Shrink here. I think (and I’m prepared to be shot down here) over-concern about the labelling effect of diagnosing someone is largely the preserve of staff meetings; patients themselves prefer to know what’s wrong. It’s a familiar model - you go to the doc, he tells you what’s wrong, you get the treatment. When people come into contact with mental health services, some of them must end up bemused when this process doesn’t seem to occur.
March 6, 2008 at 8:48 am
Jan
While ever a diagnosis is ONLY a descriptive term, used among people who know what it means and can correctly interpret its implications for someone’s future treatment, then I don’t have a problem with it. But it tends to escape from our medical records, and ends up in the mouths of those who can only use it as a pejorative term. That’s when it becomes a “label”. Clare Allan makes some interesting observations on what diagnoses mean (or don’t, as the case may be) to the public: http://society.guardian.co.uk/.....87,00.html
March 6, 2008 at 9:20 am
FlutterBy
Speaking as a 57-year-old female who has asked her GP to arrange an assessment for Asperger’s.. I’d been wondering about this for some years, but recently I had occasion to speak to a training adviser, and I asked her advice on the subject. She referred me to an omline quiz based on the work of Professor Simon Baron-Cohen at UoCam. I scored 36/50, which apparently places me firmly in the AS region. I passed my results sheet to my GP and he’s following it up.
My reaction was not horror that I’d got ’something wrong’ with me - but a tremendous sense of relief, a ‘Eureka’ moment, a feeling of ‘So THAT’s why!”, as some fifty years’ worth of questions were answered.
Whether being diagnosed with AS will become a ‘label’ in the sense Jan means, only time will tell.. but it works for me, as it did for Edmund’s parents.
March 6, 2008 at 10:13 am
Mr Ian
Labels, or diagnoses, are there for the clinical purpose of directing care. A generic tag allows for the generic treatments to be implemented - and the nuances of individuality managed independently as clincally observed.
For every good idea tho, there will be those who misuse/misapply/misinterpret it.
March 6, 2008 at 11:43 am
Mandy Lifeboats Adrift
People with mental health problems often get angry about labelling because they see it as a way of stigmatizing and excluding them.
However, when I finally got a diagnosis of bipolar (called Manic Depression at the time) I was rather relieved. I had had so many different labels before that didn’t really relate to how I was and bipolar is the nearest label to what I actually suffer with.
I think the problem with certain diagnosis is that when you then say to someone “I have bipolar”. They can start to get freaked. I overcome that by speaking honestly about how I am, and saying that it is one part of what I am not the sum total. And we are all different (and a bit samey) in that I am able to express my diagnosis in an upfront, take it or leave it kind of way. Some people might not be that facey and be rather more reserved.
Again, we need to get back to individuals whilst acknowledging that we are all part of the same race. I think
:>)
March 6, 2008 at 3:31 pm
oldschoolbaby
Diagnoses are a very important, if not vital, means of communicating information. You can invariably rely on the team social worker to take vicarious offence on behalf of all and sundry but as our straw poll demonstrates a “label” seems to have a positive impact on most people.
March 6, 2008 at 4:58 pm
Cockroachcatcher
When I started in Psychiatry my Guru told me that it was important to watch what was going on across the pond as things happening there tended to travel across to Britain. So just when we thought Hyperkinesis was rare up to the late 80s the wind blew us the ADHDs. Obesity is arriving, and so are the operations. Now of course ASD (Autistic Spectrum Disorder). I highlighted the problem of Autism and Money
just a few days ago. At dinner last night, a retired Orthopaedic Surgeon asked me what one should tell young people to go into. “Go with the heart!” I said. No, perhaps I should have said “LAW”. The lady sitting next to me just came back from a Hawaiian Cruise, and her husband is a lawyer. On second thought, perhaps not. I should have said, “Go with the money, to EU.” EU is the most luxurious gravy train there is, better than the UN or World Bank.
The Cockroach Catcher
March 6, 2008 at 11:40 pm
uselesscpn
Education services like diagnoses - they enable them to ‘target’ support. I put off having my son diagnosed with Autism (although, as a LD professional I knew he was autistic from about 3 months old) because I didn’t want him to be labelled - he is himself, with his own little personality quirks and all. However, eventually I had to go down the diagnostic route to get his SEN statement and the specialist provision he requires. It seems (maybe for once) that (mental) health services are more progressive in targetting need rather than diagnosis…
March 7, 2008 at 1:43 am
Mr Mans Wife
I totally agree with The Shrink, and many other comments here.
The preconceptions of others are due to lack of education, not due to labelling. If Mr Man was described as having an acute polymorphic psychotic disorder or a delusional disorder, I doubt the general public would view him any better. Lack of understanding leads to prejudice.
But a correct diagnosis can lead to understanding, by those who are willing to understand anyway.
March 13, 2008 at 6:57 pm
mystic mog
yes labels can cause stigma but, they do have their uses. One of mine says handwash only but having only looked at it after the said article came out of the machine it was a bit late.