I get so many messages from parents saying things like ‘he/she is not yet diagnosed, the main problem is she/he does not show the behaviours at school’ or ‘no one believes us and says it must be our parenting as she/he only melts down at home’ or ‘my child tells me he is miserable at school but the school says he is fine when he is there, however my child self harms/refuses/is aggressive or all three when he comes home.’
This seeming change of personality between settings is called masking camouflaging or passing and is well documented in autistic circles especially in girls and women. I found this very clear article explaining about autistic masking by Loren Snow for Healthwatch Bristol if you need further clarification of how this feels to an autistic person.
Masking and issues with difficulties being recognised
This was exactly the issue I had with both getting my son diagnosesed and support before and after diagnoses. It also had caused problems with getting other family members to understand my son including his Dad (who does not live with us) as for a long time he masked with him too. I have not been able to find any studies on how many children specifically with a PDA profile mask compared to in the wider autism community but it does seem to me observationally that the numbers in PDA children are higher than in other autism profiles and also that it is split more equally between the genders. Personally I feel this is because of the extremely high levels of anxiety that children with this profile of Autism suffer.
So does high anxiety drive the urge to mask?
Speaking from the point of view of my own child, who has told me his first thought on meeting someone is that they have the capability to murder him, masking is an act of self preservation. Normal social interaction with anyone apart from those he is closest too, and trusts the most, is equivalent to me being approached by a large man in a balaclavas at midnight on a dark street.
This man may mean me no harm but my anxiety would be raised but my opening line is not going to be ‘please don’t hurt me’ even if that is what I am thinking and I am not going to burst into tears or attack him I even if I have gone into flight or flight mode. No I would try to brazen it out, try to appear strong and capable and hope he leaves me in one piece.
This situation would be really stressful for me and would take some time for me to recover from even if the man in question had turned out to be a policeman or a lost tourist. Imagine how it must feel to put on that front and be at this level of alert all the time. Is it any wonder that when a PDA child returns to the safe arms of their family where it is safe to show how they really feel and be who they really are they meltdown?
They take the mask off only for those they really trust
I asked my son once in a moment of calm why it was only me the most aggressive behaviours were directed towards and he said ‘because I know you will love me no matter what. If I showed the blackness (meltdown) to anyone else they would not like me, they would not think I was a good person.’ Of course masking is not just about covering up overload but disguising your lack of understanding in everything from social cues to losing track of what is happening due to processing problems. It is about not showing vulnerability.
Mimicking behaviours without true understanding of them
PDA children will often mimic or learn a interaction or social rule and parrot it without fully understanding it. My son came home from school one day upset that he was unable to play with the other children as the game he had chosen was over ruled by the others and he didn’t like the one they played instead. I explained to him that sometimes you might have to play other people’s games too as part of a friendship.
The following day he came home telling me he had played football all day. I voiced my surprise as I know my son hates football and he said ‘you told me I had to play their game to be liked, and then promptly burst into tears telling me how much he had hated it and how he was now going to have to play it every break times as all his friends believed he loved it so much.
One day he was playing tag in the playground at home time when I went to pick him up, when he didn’t know I was there he was laughing and smiling and running about and then he saw me and ran over only to burst into tears when he got close enough that’s no one else could see!
So how do we get the professional or family members to see what we see or even to believe we are actually seeing it?
This is the six million dollar question isn’t it? I have known parents to video their children on their phones and while I understand why you might be driven to this and would judge no one for doing so in order to get help, for me it would feel like I a breach of my sons privacy. That said waiting until my son got so traumatised that he could no longer mask due to autistic burnout was not the ideal sinario either.
The key, at least in my eyes, is for professionals to stop being so ridgid in their approach, to listen to parents, to look for the more the subtle signs that back up the parents story and to understand that masking is not only a thing but far more common than we are led to believe in autistic girls and boys, men and women.
Small signs can have a big message if you are ready to hear it
When reading back through some of the past observations of my son at school, where he showed ‘little or no autistic traits’, I see a boy screaming for help. His stim of pulling at his sleeve, the description of the panicked look and checking around him to see what others were doing when the teacher changes subject, the lack of interaction with his peers (read by the observer as focus), the non expressive face, the rubbing of his eyes when he thought no one was looking.
All these things were significant enough to be recorded but not significant apparently to detect the signs of autism being masked by a skilled child, skilled because he felt his life depended on it. A skilled child who also knew full well that the adult observing the ‘class’ was only looking at him so he had his mask on extra tight.