The dark side of a ‘Label’ and Impact on families forced to use a ‘label’ to ‘signal’ invisible difference
I hope this article will be a thought provoking and interesting one for both professionals and parents and those affected with invisible difference. ‘Label’ may be a small word but it has huge consequences both for professionals and families. Let’s look at how professionals and families view the term ‘Label’ then perhaps decide on how useful or not the term is after all.
Embarking on a diagnostic pathway for invisible difference can only be likened to attempt to summit Everest without oxygen. It is a thankless task for those that are brave enough to go in search of their ‘identity/reasons for difference’ or indeed an explanation into the different world of a loved one. Families burdened with ‘label’s’ often get blamed, chastised, punished or investigated for merely using a term given to them by other professionals.
Families and those with invisible difference are keen to learn what makes them different, not as many professionals believe - to primarily access services and benefit entitlement, but to find out their identity and to be able to explore strategies that may help them in their lives. ID does not just mean ‘identity’ for many with invisible difference and challenging behaviour, ID means ‘identifying difference’ a whole different concept.
It is the professionals who are keen to ‘label’ those with invisible differences, primarily to short-cut communication within a multidisciplinary team. However the ‘label’ can and often does cause confusion, hostility and a potential nightmare for parents and those carrying that ‘label’. The usefulness of a ‘label’ from within professional’s eyes may in fact be a disaster through the eyes of a service user.
From a Professionals Perspective
Label – a short word or phrase descriptive of a person, group, intellectual movement etc
The NAS Autism Helpline is frequently contacted by parents who are puzzled by the diagnostic label their child has been given. Most parents are now familiar with the terms ‘autism’ and ‘autistic spectrum disorder’. Problems arise with a range of other diagnoses where the relationship to the autistic spectrum is not clear.
Trull (2005), refers to diagnostic labels as a sort of ‘verbal shorthand for representing features of a particular mental disorder’ (pp126). Similarly, researchers often use diagnostic groups (based on the DSM-IV-TR) to "define experimental groups".
The usage of the word ‘label’ appears only to be valid when being used within a professional context e.g. from one professional to another to explain behaviour.
Professionals appear happy to use the term ‘label’ but not happy for parents to copy.
From an Individual or Parental perspective
This is how professionals view parents who ‘use’ the ‘labels’ referring to invisible difference given to them BY professionals.
- Label – a term used by parents or individuals to ‘buy’ into a system of entitlement, support and financial benefits. An excuse to cover up for a parents own failings ‘bad parenting’.
- Label – a term used by those who think they know more than the professionals.
- Label – a way of explaining a neurological difference that affects behaviour but not understanding the pathology associated with it.
- Label – seen as an attention seeking exercise by parents – ‘Factitious illness’/Factitious illness by proxy that often leads to action from Social Services Child Protection Teams.
Parents and individuals who approach professionals either in search of a ‘label’ or already in possession of the knowledge of a ‘label’ often get criticised and accused of ‘knowing too much’ or ‘making things up’.
When parents or individuals with invisible difference repeat the ‘labels’ to other professionals they often come unstuck and find themselves in the spotlight with their own behaviour and motivation under scrutiny. Embarking upon an already scant, fragile diagnostic pathway for ‘invisible’ difference takes a strong stomach and determined willpower. No one willingly would start the journey with the knowledge of so many hurdles, pitfalls and potholes that they will encounter from the start.
The ‘labels’ that professionals are so keen for us to take on are more often than not, are actually detrimental when they are repeated to other lesser educated professionals. The situation often becomes so detrimental that ‘labels’ actually cause many more unwanted and perilous problems for many individuals/families involving other agencies such as Child Protection, Criminal Justice and Department for Work and Pensions.
Families involved within the Child Protection, DWP or Criminal Justice system or that has had previous dealings with them, are often too terrified to vocalise any further concerns they may have for fear of being punished, investigated or terrorised by authorities that feel the problem may be of their own making. This leaves many families remaining invisible whilst trying to cope with insurmountable problems alone, scared and silent.
For those with ‘accepted’ invisible and visible differences e.g.: visual impairment, hearing impairment or learning disability ‘labels’ are widely used and accepted by all those using them. ‘Labelling’ an individual as ‘blind’ or ‘deaf’ appears acceptable whilst ‘labelling’ someone with other invisible differences such as Aspergers Syndrome, ADHD, Epilepsy, HFA etc is still today for many professionals - unacceptable.
Families and parents will often get blamed for using ‘labels’ deemed ‘fluffy’ or ‘made up’ with the result of being blamed themselves. Parents and those with invisible difference would prefer clinicians use the word ‘signal’ instead of ‘label’. None of us want to label our loved ones and many find the prospect offensive. It is the professionals who use the labels and then blame us for following suit.
A person with visual impairments will often be ‘labelled’ blind, hearing impaired – deaf. This is to communicate to others that this individual will need help in certain areas. Would any of us in reality hesitate to use the term ‘blind’ when attempting to guide someone on a walk by the cliff edge? Would any of us expect someone with a hearing impairment to be shocked as someone who doesn’t know plays ‘boo’ with them? ‘Label’s’ are meant to HELP us not HINDER us.
- ‘Signal’ – A gesture, action or sound that is used to convey information or instructions, typically by rearrangement between the parties concerned.
- ‘Signalling’ to someone a specific difficulty or deficit is after all the intention of a diagnosis? A ‘signal’ will allow others to help any individual with any invisible difference.
Using ‘labels’ for many families with invisible difference not as yet recognised, or understood by many, is not the answer they are looking for. ‘Label’s’ are unhelpful and inconsiderate to the majority. For some the ‘label’ becomes a millstone around their necks whilst other professionals query their ‘label’ and often dispute it.
For those that have invisible difference and a ‘label’, life is even more traumatic, in reality it is often a continuing nightmare of blame and shame. Still however the professionals argue over what exact ‘label’ we should carry whilst we suffer in silence again as no one listens.
The time has now come for those that ‘label’ us to listen to us, whilst those that doubt us still refuse to ask those responsible. The majority of us are fed up with believing a ‘label’ will help them when in reality it destroys them.
Anecdotal evidence from parents and individuals with label's.
- All the professionals ever do is question us about our son's behaviour and diagnosis, they blame us and are quite open in doing so, they know nothing.
- Gutted that after 4yrs of searching, at last we get a diagnosis of Aspergers Syndrome for our son but no one at school believes us and accuses us of labelling unecessarily!
- My daughter has a diagnosis of HFA but because she gets A grades in Maths and English, no one believes the diagnosis!
- My employer believes my diagnosis but the disability advisor within the company says I am making a fuss!
- I have been searching to find out who I am for 24yrs, now I do I get accused of 'buying' a diagnosis.
- Noone locally listened so we sourced an expert out of county, successfully diagnosed with Aspergers Syndrome only to return home to have that diagnosis refused,
- Noone locally accepts 'challenging behaviour' and neurological difference or my diagnosis, they blame me and my parents for not bringing me up right!
- Having the label of Autism has worked against me in so many ways, no one believes me and refuses to listen saying I am making it up!
- A 'signal' is far more useful, it stops people thinking I am pretentious
- I told the Social Worker I had Aspergers Syndrome and she said "so what, I don't believe in labelling people and you look perfectly able to me".
- I told the doctors my son had high function autism and he labelled me as an 'abuser'. So much for honesty, I still live my life with those terrible memories of nearly losing the son I had tried so hard to defend and help.
... and synthesised differently