Tuesday, July 21, 2020

An Exploration of PDA Masking

This is the transcription of an animated video I made for the Positive PDA Virtual Summit 2020 on the subject of PDA masking.

Masking means hiding your true feelings; often seeking to appear calm and happy.
A form of masking is social mimicry, which means copying what you think are the right behaviours  to fit in and get along with people.

Before I get stuck in, I should point out that while many PDAers, including myself and Milly, do mask, some PDAers say they do not mask at all.
So not all PDAers mask.

Awareness that many PDA children mask, for example in school, has lately been growing. This awareness, to my mind, is of very high importance because, if educators, diagnosticians and other health practitioners are not aware of masking, and how extensive it can be, they will be bound to assume that the child has no real issues.

I had direct experience of this when my daughter Milly was assessed for ADHD last year. The local child development centre had updated her autism diagnosis to include PDA when she was five. I’d then requested them to assess her for co-occurring ADHD.
The clinician who assessed her pronounced that she could not be ADHD because her teachers had reported no hyperactivity at school, despite her extreme hyperactivity at home. She said ADHD traits cannot be masked, and her behaviour at home was due to autistic sensory seeking.
It took me a long time, but I eventually overcame demand avoidance and asked my GP to request a second opinion on account of the extent of her masking not having been considered.
One of the centre’s lead clinician’s phoned me in April and agreed that Milly needs to be reassessed by one of their team observing her in school. This lead clinician was aware that teachers are unlikely to be able to spot the subtle signs of masked ADHD. 

Masking school children, are therefore vulnerable to being denied support and accommodations, even if they have autism diagnoses, with or with out a description of PDA.
School staff are likely to focus their attention on extroverted children.
However, masked PDA kids, like Milly, are actually very anxious and stressed behind their masks.
I’ve heard of older masking PDA school kids who have attempted suicide.
Yes, these masking PDA children do need support.
They are not having an easy me.
Their PDA is not “mild”
It is merely hidden from view



I spent the majority of my school days locked in immersive daydreams and desperatety unhappy and depressed

Another major issue that can occur when professionals don’t understand masking is that if parents report their child being loud and unruly at home, perhaps having meltdowns, when they are mouse-like model pupils in school, professionals have been known to assume this is caused by bad parenting: “they are perfectly well-behaved in school, so if Mum says they smash the house up and scream when they’re in her care, it’s obviously her fault.”

Perhaps worse still, parents, especially mothers, can be accused of FII (fabricated or induced illness, the new term for Munchausen by proxy) and be harassed by social services as a result, instead of the PDA child being given appropriate support. This is really, really not good or remotely helpful.

Awareness and understanding of PDA masking is therefore, in my opinion, vitally important.

Now, although masking is not a universal PDA trait, it does seem to be a very common one, and, where it does occur, it is often to an extreme extent.

I believe PDA masking is qualitatively different to the type of masking that’s abhorred by many autistic people. I think it’s important for this to be understood.

As I’ve said, I’m a PDAer who does mask. Social mimicry was the trait that jumped out to me on a female autism traits list I saw back in 2013. I was shocked. I’d always done this, but never before seen it described as a recognised human behaviour. I realised, on reflection, that I fitted all the other traits on the list as well. I asked my GP to refer me for adult autism assessment, and was diagnosed a few moths later.

I enthusiastically sought fellow autistics to converse with online. I was highly confused to find that masking and social mimicry were considered very bad things that neurotypicals wanted autistic people to do, but that autistics hated.
How could this be? No one had told me to mask. My masking felt like a natural thing that I wanted to do. Yes, I was unhappy, devastated in fact, whenever I messed up socially (alas, a frequent occurrence) but it was me who wanted to learn how to improve my social communication.

I noticed signs of masked autism in Milly, who was 2 at the time, and succeeded in getting her autism diagnosed, despite her nursery manager and senior health visitor firmly opining that she was no way autistic (they knew all about autism) and that she was just shy.

I came across PDA at the time of Milly’s formal assessment in 2015. I realised PDA described essential parts of me that autism alone did not.

In meeting adult PDAers online - the only resource at this time for adult PDA was a Facebook group run by fellow PDAer Julia Daunt - I found I connected instantly with the community. I had never before integrated this well anywhere.

Following hundreds of hours of online chatting, both with PDAers and general autistics, I picked up that PDAers seemed more likely to consider masking to be natural, and less likely to think badly of it.
However, nearly all general autistics I spoke with, as well as a few PDAers, saw masking as an evil thing brutally forced onto them by unaccepting parents and society. They described it as exhausting, and unhealthy; unnatural. Many talked of having liberated themselves by dropping their masks.






This intrigued me, so I ran an informal study, which backed up my supposition that PDAers are more likely to see their masking as natural. I spoke to Grace Trundle, a forensic psychology PhD student from Nottingham University specialising in adult PDA.

She explored this through formal research. Her findings did suggest that PDAers carry out more social mimicry and masking than general autistics.

I believe there is much more to be explored with regard to PDA, and general autistic, masking, and am excited to say that I will be working with Grace in future to carry out more, formal research.

In the meantime, there is, I think, likelihood that many PDAers have an instinct to mask, as opposed to many non-PDA autistics who only mask if coerced to do so, and feel miserably oppressed as a result.
Now, I think there’s a very important point to bear in mind here: while autistic children might appreciate being told they can express themselves as they wish; the same message may confuse a PDA child
I want to reiterate that not all PDA, and general autistic children are the same. Far from it! But there does seem to be evidence that a significant proportion of PDAers mask, and believe this a natural thing to do; and that this differs from what general autistic people have reported

My daughter, for example, communicated to us, her parents, from the moment she could do so (about 2-years-old) that she was OK, when she very clearly wasn’t. On one occasion, for example, she had tried and bashed her head against the door frame. She had a gash on her forehead and tears streaming down her face. We rushed to comfort her, but this caused her to panic and insist that she was OK. We didn’t want to panic her, and wanted to agree with her; to say “oh good, you’re OK”, but we also wanted to comfort her for the physical pain she was adamantly denying. It was very hard to parent!
I resorted to holding my arms wide for her and sitting calmly so she could choose to come for a cuddle; which she did.

Now, in case you’re wondering, we never reacted negatively to our daughter for crying and expressing pain. Her desire to mask it appears to have been a natural instinct.

I had a conversation with her about this a couple of weeks ago as it happens. She’s now 9.  I told her about how she used to say she was OK after painful toddler injuries, when she clearly wasn’t, and how it had been very hard to respond to her, because we’d wanted to comfort her. She thought this was funny. We’d got to talking about how we both hide if we are hurt. We shared stories of childhood injuries we’d tried to conceal.
One story I told her about a time n the school playground when  was about six, and ate a square-shaped chewy sweet which got stuck in my throat, with the corners digging in so it really hurt and I could hardly breathe, but I did all I could to behave as if I was fine. I have no idea why.
A story she told me was of falling over in the playground when she was in year one and cutting her knee badly. She pulled her sock up over it to hide it, but the sock went dark with blood, so she kept her skirt pulled down low.
She told me that on an other occasion, this time in her garden, she fell into something and bashed her face, and her nose started bleeding. She sneaked upstairs and hid under her bed. She told me there’s still a dark patch of blood on the carpet there.
I asked her if she knew why she did this. She shrugged her shoulders and speculated that maybe it was because she didn’t want the attention. I said, “I’ve been wandering about masking. I think we discussed this before? It’s where some people, such as myself, want to hide what we feel and look calm and happy…” She cut me off, and said, “It’s definitely that!”

So, the type of masking we do, myself and Milly that is, is driven by not wanting other people to know or see what we really feel.
If a well-meaning teacher came up to Milly and told her they could tell she was masking, and doesn’t have to do it, she would total panic, and be upset that her masking had been spotted, and confused by the teacher telling her she could just stop doing it.

I’ll now describe to you a bit more of what my masking and social mimicry feel like to me.
My experience may not match everyone else’s, but I hope it shines some light onto what PDA masking can feel like.

I’ll also be exploring the positive side of masking.
I personally do not see masking as a bad thing at all.
I see it as natural, helpful and sometimes great fun :D

But before the fun, comes what I call the fear wall.
The fear wall is not fun at all.
It is a horrible, paralysing bubble of terror that leaps up to engulf me when I want to speak to people. I’ve been cursed with the fear wall since I was a very small child.
I never wanted it, nor knew how to make it go away.
It meant I couldn’t talk easily to people, even though I longed to.

I remember as a nervous, young adult with low-self-esteem, being lonely and depressed because of it. There were only ever a few people at any one time who I could talk to easily. My fear wall blocked me from communicating with everyone else.
However, it wasn’t always possible to see the few people I was comfortable with, and loneliness would set in.
This was often a panicked loneliness too.
I used to be terrified of being alone.
Sometimes I summoned  the resolve to expand my social circle and visit someone who wasn’t one of my safe people (the two or three people I was relaxed with).
I chose people I’d been able to talk to with relative ease in the company of one of my safe people.
I’d bravely arrange to meet this person, determined to overcome the paralysis of my fear wall, but - every time - my fear wall clamped down on me, leaving me panicked and scarce able to speak. I’d sit there awkwardly, wishing very hard that I was happy and relaxed and able to enjoy their company. But I couldn’t. It was excruciating. Very disappointing too.
I wanted to say and do the right thing, but I had no confidence in myself to know what what these things were.
There was one friendly girl, a bit older than me, who’d I’d known since my teens. I often walked with her up a hill - I’m pretty sure we did more than this! but this is what I recall. Every time, I found myself saying, “it’s a long hill!” Then instantly regretted having parroted myself from every other time we’d walked together up that same hill.
I wanted to talk freely and spontaneously, but, well, couldn’t.

Now let’s look at how masking has been able to rescue me.
I’ve gradually picked up, here and there, throughout my life, phrases; mannerisms, expressions and other snippets of social communication, that people appeared to respond well to.
I’ve never been good at small talk, but my scavenged communication toolkit has given me confidence that I can hold my own socially *enough* to permeate my fear wall, so that I could - as was my desire - interact with others.

How great is that?!



Now, some people view masking as shady and dishonest. After all, it entails hiding one’s true feeling behind a calm, happy front.
However, for me, masking enables me to break through my cursed fear wall and communicate (full stop).
And I do actually seek to communicate my true feelings.
It’s an odd one - I’ve become aware of this as I’ve searched for the words to describe how masking works for me - My masking enables me to communicate deep, genuine feelings that I could not otherwise describe. At all.

I’m trained as a person-centred counsellor
What I relished most in this training was being taught how to actively listen and communicate empathy; and having specialist tutor feedback about how I came across.
This was perfect for me.
I was also highly encouraged to be informed my self-awareness is well-developed.
I failed to pop out the end of the training schedule as a working counsellor. I got as far as the first term of level 4 (now permitted to call myself a qualified person-centred counsellor) and quit because of health and PDA avoidance issues,
But the social communication skills I’d Iearned have been a massive boost to me, and completely transferable into every day life.
My ability to mask broadly, so as to communicate with most people I meet with relative ease has been massively boosted by this training.

And, as I mentioned earlier, masking can be a very pleasant thing to do.
For example, we had a family holiday to Rabat in Morocco a couple of years ago. Rabat is not a touristic place, and I was ultra conscious of it being a deeply Islamic community in which women are required to be demure and keep their bodies covered. Dressed conscientiously, I sought to deport myself in a demure manner. Although this might sound like the antithesis of the freedom PDAers need, I actually had great fun stretching my wings into this new mask. It felt liberating and deeply satisfying.

I think the PDA traits of being comfortable in role-play, and liking novelty came into play here.
So, in this light, masking can perhaps be thought of as an aspect of the PDA trait of liking role-play… or is it the other way round?