Masking in Clinical Situations

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.

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A ChristmASD Tale

It was Christmas time and all throughout the house not a thing was stirring cos this family was skint.

But let us take our attention elsewhere in a manner which should make this situation clearer. Dear reader please consider this (un)each other gentleman, Dexter William Pittance or DWP to his frenemies and to us henceforth.

DWP was ill-liked because he was in charge of giving out alms throughout the town and sparingly he did and not often enough. He particularly hated giving money to those members of the parish who were ill or unable to partake in the usual means of acquisition through physical or mental conditions.

He hated these people so that he often deemed to not believe their misfortunes, even if they were apparent. So often did he refuse to gives alms to such folk that the local magistrates were inundated with appeals to law and good nature. Seven complaints out of ten were successful in this course of action but Mr DWP continued in his miserly ways.

One such family which fell before the mercies of the magistrates were a family all touched by the light of the Spectrum, or Changelings as some have called them, some call them autists. The child of this family was also visited by the sugar fairy and what some called the shivers, St Vitus Dance or the learned call Seizures.

It was this child, so deserving of any kind of help, that Mr D W Pittance forsake. This was two months shy of Christmas in the year of our lords and ladies 2017. The family of this child were beleaguered as most of their income came from the small bursary given to be the carers, nurses, therapists and teachers of the child. They ran to the magistrates in desperation.

The magistrates however were so waterlogged by crying claimants they could not see the family’s case for a whole year. During this year the family frequently ran out of money for food and would have starved without the kindness of some of the townfolk and sadly the father of the house had to abandon of course of learning he had undertaken to help his family and others like them. They also saw so many further hardships but these are far too melancholic for a Christmas tale such as this.

Finally their case was heard and the magistrates found in their favour. The family were overjoyed, at last their hardship was over. And just before Christmas too.

And was Mister Dexter William Pittance penitent? Did he quickly give out the alms that this family had gone without for a year? Dear reader he did not. A week before Christmas and still DWP had not given out these alms owed.

The family were distraught and angry. Why did Mr Pittance not give them what he had to? Why did he always expect any monies owed to him to be paid forthwith, on pain of broken kneecaps?

Christmas was cancelled. But then at the last minute a kindly scribe from the local gazette told their story to a much more humane giver of alms. The family were helped to have a Christmas after all.

It may not be a lavish and bountiful feast like others but it was a Christmas in the truer sense of the word – predicated on kindness, charity and goodwill to all.

And what of DWP? Was he visited by three ghosts (from the many caused by his hand), did he mend his ways? Sadly not dear reader. Mr Pittance would continue to be the bearer of suffering and lack of care for fellow humans, until perhaps a new town mayor took over and forced DWP to help those in need, as he was meant to do.

This may be Christmas but that is too much to expect even for a Christmas Miracle.

Merry Christmas everyone.