We’ve all heard of Masking and how autistic people can hide behind a mask of pretend normalcy to fit in, but Masking in clinical and medical situations can lead to a lack of support.
Imagine – if you can – an autistic person having to go to an appointment or assessment with a medical professional. Imagine someone who isn’t comfortable going into a room with a total stranger and having to describe their issues or communicate a feeling.
What strategy could they use to avoid the stress of this situation, to try to give that professional what they want, to try to just get it out of the way? Because you can trust me when I say that no matter how serious a situation is or how much that person wants it sorted by the time their appointment comes around they will be so anxious they’ll want to be out of that room as soon as they enter it, if they haven’t already cancelled it.
So they will tell that medical professional what they think they want to hear, they will be self-deprecating and apologetic at even attempting to waste that professional’s time. They will try their best to appear as normal as possible, camouflage their difficulties – the issue they’ve actually come to see about as well as their difficulties in communicating it – they get out of there as soon as possible.
Masking is born of the fact that we are pack animals. Being part of a group means having to react quickly and instinctively in many varied situations. This is where the Mirror Neurons come into play. A recent discovery, Mirror Neurons help us pick up cues from other people and copy them: dancing, learning actions and even contagious yawning.
You’d be tempted to think that autistic people have deficits in these Mirror Neurons but you’d be wrong. In research tests it has been proven that in fact autistic people out-perform the non-autistic with mirroring tasks. Where it all falls apart is when other parts of the mind try to help out too.
So Masking is a mix of unconscious and conscious (and often very strained) mirroring. Those two may even be at odds with each other, hence some non-autistic people might find the autistic person odd or not-quite-right.
In clinical situations, particularly for kids, Masking is often totally ignored or the professionals are not even aware of its existence. When I attended appointments with my son I had to constantly make counsellors and doctors aware that what my son has just finished saying was complete tosh. Of course this put me constantly in the “negative position”, particularly considering professionals dealing with kids tend to use overpowering positivity while building rapport.
This is like catnip to a Masking autist as it gives them a very easy target to aim for. Recently during an appeal proceeding we received letters sent to my son’s GP from his counsellor which made it seem he had made the greatest recovery of all time, not very helpful as evidence! When these letters were written and my son was supposedly doing amazingly well he was actually talking of suicide and neglecting his diabetes regime which in a way was a kind of slow suicide.
You can see how this could be a bar to getting appropriate support. A lot of assessments and appointments whose raison d’être is to gauge how much support is needed are dependent on the patient being able to communicate that need efficiently. Obviously autistic people are already at a disadvantage here, never mind those who Mask effectively.
Take for example those Work Capability Assessments carried out by information gatherers – not necessarily with a solid medical background – for such vital benefits as Personal Independence Payment and Employment and Support Allowance. The success rates for these benefits have often been queried and it is undoubtedly their remit to kick as many genuine claimants off as they can.
Imagine a masking autistic claimant having to face the cleverly worded, designed to catch you out, dialogue in one of those assessments. You don’t have to as I myself was asked in one of my first assessments about how long I would be off and as I thought the whole point of the assessment was for them to be reassured I wouldn’t be on the prospective benefit for ever. So I told them I was prepared for returning to work and was looking forward to it etc. Obviously I failed my assessment that day.
Picture my son, if you recall my previous examples of his camouflaging his issues and mirroring the positivity-heavy rapport of clinicians, going in for such an assessment. Again you don’t have to, as he did, and was immediately and perhaps predictably stripped of his disability benefits and I of my carers.
It took a year to get this decision overruled. A year of financial hardship and the lack of extra support that a qualifying benefit like PIP can bring. Luckily at his Tribunal hearing one of the panel was au fait with the concept of Masking (I’d included two academic papers on the subject in his evidence bundle just to be on the safe side).
Roughly 70% of benefit appeals are found in favour of the applicant. This is an expensive business easily avoided. It is a national shame that such a high number of people in need are stripped of or not given vital benefits, it is even more worrying if you consider the proportion of those failing could be doing so due to Masking and not only an ignorance of it but actively working a system that exploits it.