I sympathise with children and young people when they find it hard to accept their diagnosis of AS.
Being a young person with AS and living in a society where the majority of its members are neurotypicals is not an easy task. Mainly because young people, including some AS, feel the need to belong to a peer group and not to be the odd one out; and also, because of the lack of education and understanding that the majority of young neurotypicals have regarding AS.
As I was diagnosed with AS in my late forties, I already have a series of strategies to circumnavigate the jungle of social relationships, and most importantly I already thickened my skin to a certain degree. This may not be the case for young AS nowadays who have just received their diagnosis.
A diagnosis, although providing an explanation to some sui generis patterns of behaviour and potentially opening the door for professional support, can be a heavy blow that must not be underestimated because what must be accepted is enormous and unsettling.
I write below a summary of some of the realities that we must accept. I will elaborate longer on the part of emotions as it has the most utter importance. There are many more however, and for the brevity of the blog I condensed them into the following points:
· We need to accept that a person with AS always will have AS. Although experts and authors agree that positive interventions and the right environment can help AS people achieve their top potential and live fulfilling lives, there is not such a thing as a cure for AS because it is not an illness
· Society will rarely accommodate our particular needs. Many of our needs are not obvious and a majoritarian neurotypical society use the same yardstick for everybody
· We need to accept that in order to be accepted in friendships groups, the job market, cultural circles etc. we need to mimic certain social conventions even if we see them as superfluous, insincere and time wasting. An example of this is making small talk
· When people meet us for the first time and know that we have AS they can make judgements and assumption’s based on the level of their knowledge and understanding of AS. For some we can be considered faulty goods or mentally deficient, for others we can be seen as endowed with genius abilities. These two scenarios are unsettling to us as all we want is to be perceived as and treated equally
From personal experience I can say that we can annoy people and get into trouble despite the best intentions of our hearts and get baffled as to why this is so.
To explain this, I will use an analogy that I have heard about salt. In cooking I believe there is not another simple ingredient with the potential to change the flavour of a dish quite like salt. If we underuse it the food becomes bland and if we overuse it, it is inedible and we throw the food away.
If in place of salt we put emotions, most neurotypicals would have the knack of knowing how to manage them internally and in their external expression. So, say if somebody close to them is upset, they will express their emotions accordingly to the situation. This is they will acknowledge the person suffering, express their empathy, and give that person some space. (even if they don’t harbour true sincerity or empathy).
What is most important is that they will know the right timing and the right person to whom to engage in this emotional interchange in most of the cases. Contrary to general belief AS people have
empathy and this can be enhanced to an extremely high level. However, they do not know how to manage it.
The issue here is how to calibrate this caring nature and the array of emotions that we absorb without filters, how to understand them, how to name them, how to process them, and the trickiest part, how to express them according to the situation and in a way that is not too bland nor too ‘salty’.
Suffice to say, some of us have got this wrong and have got into conflict, as in for example when we offer unwanted support and help for some people that want their own space and are flabbergasted at the intensity of our emphatic nature. As a result, they ostracise us by distancing themselves from us. The sad thing is that some AS people, once rebuked for their over saltiness, will as a protective behaviour use the bland approach, or perhaps hide themselves in their shells and withdraw emotionally, even in situations where their support could have been wanted or even necessary.
I believe that we have a calling to be ‘the salt of the earth’ and therefore we should always try to use one of our greatest attributes – our great capacity of care.
I believe that emotional literacy is indispensable, as this will foster self-awareness that can lead to more clarity in our social exchanges, and this in turn can help us to avoid committing too many faux pas in the way we interact with other people in what is for AS individuals, the most delicate sphere of human interaction.
Our support system, as in our family members, school mentors or professionals, can point us in the right direction. Even so, it is not an easy road, and we can still make mistakes. however, we must not dismay or sit in a dark hole of despair. We must bounce back and try again and again and again.
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