The Invisibility Cloak
I have been posed two interesting questions which are actually really important. They have been asked by my cousin, a social worker. How can a diagnosis help or hinder? How could this help a foster carer provide the best care for a child in their home? I believe this goes hand in hand with the concept of ‘hidden disability’. A hidden disability is a disability or condition that is not visually obvious upon first glance. This would also mean it’s not immediately obvious the challenges that the individual may encounter. The idea of a hidden disability is not only unique to autism, however it is very profound.
The main issue is the issue of prejudgement; that is assuming that someone is something that they are not and the expectations that going along with this. This is dangerous within the scope of any disability or condition, much more so with one you cannot see and are unable to see the impact of challenges or struggles as well as unlikely talents. Ignoring the individual's potential struggles can damage self-esteem and cause them to question their identity. It could open a veritable Pandora's box. A diagnosis is definitely helpful as having an diagnosis allows access to support in education and give more concrete evidence for reasonable adjustments in later life. Nothing is guaranteed in society sadly but it does give the option and allows for what some would deem to be a ‘pass’ for accessing support. In addition having a diagnosis may give answers regarding questions about their identity and giving an explanation about why they are the way they are. High functioning autism and Asperger’s Syndrome in particular are more likely to be diagnosed later in life. This may particularly be the case with feelings of social isolation and misunderstanding and feeling two steps behind as three examples.
There is the issue of stigma but often an individual will be struggling prior to any diagnosis. Often an individual will have been bullied or stigmatised by others beforehand. This may have been at school, in employment, by family or acquaintances or service providers. Sadly when these things have been said they will often stick. It is estimated the weight of one negative comment is much larger than one positive comment and this is true for all individuals. Certain individuals may need more encouragement and positivity to realise that they are a valued and appreciated member of society, whatever their role may be. There is additionally the stigma also that certain ‘labels’ bring, but shouldn’t we as a population be looking at how we can enable accessibility and equality and looking holistically at the individual and their positive characteristics rather than reducing individuals to labels, stripping each person of the unique qualities they bring to live. Each of us was individually made and unique, therefore it makes sense to celebrate our differences and recognise how great it is that we are not an army of robots, all programmed to do the same thing.
The obvious issue with a hidden disability is the potential of misunderstanding. This could be to do with a person’s wishes or requests if both parties are unable to communicate effectively; it could also be the dangerous word ‘assumption’ where we assume we know how it feels to be that individual and that we know how that individual perceives the world and how they are feeling at any one time. I guess the important thing to remember is none of us know exactly how any other one person exactly feels at one exact given moment in time. How we perceive the world is affected by so many factors: our pain tolerance, our past experiences, our mood, what happened to us earlier that day, how well we slept last night and our environment just to give a few examples. No one person is in exactly the same position at any one time. The point I make here is that we cannot assume we know exactly how someone who has a hidden disability may feel. We need to openly communicate and listen. It might be words and pictures. It may be a monologue. It may be a short and quiet discourse. But communication and an open mind are the two best weapons to fight stigma and assumption.