In carrying out our research into prosopagnosia we have met many people affected by the condition. Many people cope well in their everyday professional and personal lives, and share amusing anecotes that document their failures in recognition. However, others find that prosopagnosia poses certain limitations in life, and while these may be inevitable in some personal situations, they may be avoidable in occupational and educational settings if the condition is afforded appropriate recognition. Because prosopagnosia is not a formally recognized disorder, many people are reluctant to inform their employer that they have the condition, despite it influencing their performance at work or their relations with colleagues and clients. Indeed, many people feel they would be discriminated against if managers became aware of their condition, and this may prevent promotion and impede
other opportunities in the workplace. One scientific study interviewed 25 adults with developmental prosopagnosia, and concluded that the potential for negative psychosocial consequences and occupational disability posed by the condition is as great as that posed by other disorders that are formally recognized and supported in the workplace, such as dyslexia and stuttering (Yardley et al., 2008; fulltext can be viewed here). You can also read an article that I wrote for the Harvard Business Review here. A fascinating insight into the impact of prosopagnosia on a self-employed person's career can be found here.
The lack of awareness about prosopagnosia in educational settings is also a huge issue. Indeed, if the two per cent prevalence rate for developmental prosopagnosia is correct, 300 000 children in the UK alone may have the condition. Yet, most teachers, special educational needs co-ordinators and educational psychologists have never heard of prosopagnosia. Little research has directly considered childhood prosopagnosia, but it is not difficult to imagine that there may be a host of issues that challenge a child's social and educational development. Indeed, UK schools require that children wear uniforms and adhere to strict regulations regarding their appearance. These rules make recognition of peers particularly difficult, as they prevent any eccentricities in appearance that may be used to cue recognition (i.e. extreme hairstyles or jewellery). Without appropriate help, it is therefore unsurprising that children with prosopagnosia may become socially isolated. It is also conceivable that behavioural difficulties (such as child being unwilling to assist a teacher with the returning of work to each class member) and social isolation could be misinterpreted as signs of other disorders, resulting in misdiagnosis and inappropriate support for the child.
The Centre for Face Processing Disorders is working with individuals with prosopagnosia to promote public and professional awareness of the condition. There are several things we aim to do to ensure our campaign carries appropriate weight, and you may be able to help us meet some of our objectives:
- We need to gather data that demonstrates (a) the number of adults and children who have prosopagnosia, and (b) how the condition may affect people in their personal lives, workplace, or educational setting. We will be carrying out some formal studies examining these issues, but it would also be very useful if you could contribute any thoughts or experiences to our Discussion Forum. If a large number of people contribute to these discussions, it will provide weight for our argument that prosopagnosia needs to be afforded formal recognition.
- We need to campaign for public discussion about prosopagnosia, and particularly target policy-makers at the highest level. In 2014, we hosted a Roundtable discussion at the House of Commons calling for the issue to be addressed. Subsequently, the NHS Choices website featured prosopagnosia in its A-Z of conditions for the first time. We are endeavouring to continue this work.