She’s fine!

Richard and I have heard this said a lot about Sophia. “She was a little upset when you left but then she was fine”, “Sophia was a little quiet today but she’s been fine”, “She’s been fine all day, happy and smiley”. That’s wonderful to hear so we thought. That’s all we’ve ever wanted but sadly, that is not the reality for our little girl.

From being very young, Sophia has always been an observer. She takes everything in from a far and has a meticulous eye for detail. Her memory often astounds us and it is fascinating when she recalls things she has noticed. We frequently see these observations and experiences filter through into her role play and imitations. She can take on accents with ease and after speaking with family in London or Norway, she will begin to talk like them. It is these skills that she can use to create an illusion.

In a world of uncertainty and misunderstanding, PDA children and adults alike have a very difficult road to navigate. How do I act? What should I say? Is it ok to do this? When Sophia is out of her comfort zone and the safety of home, her mask goes on. She is now in disguise and can mimic social niceties. Her persona is that of a calm, quiet and compliant child. On the surface she appears happy, plays with friends, laughs at jokes and gets on with her work. She’s fine!

There can be days where she will go against the whole grain of her being to fit in, to be the same, to copy. The lengths she will go to, to emulate a person’s style is extraordinary. There have been many a fraught evening trying to find clothing, shoes, jewelry and nail polish to match the picture she sees in her mind; to creating the same hairstyle and packing the exact same lunchbox. Sophia can echo words and phrases she hears whilst interacting with peers and family and delayed echolalia is present when sometime later she will use a phrase and we wonder where it has come from.

There is a need to fit in but there is also a need to hide her difficulties. Sophia wants to mask the fact that she struggles to understand language and that she doesn’t get jokes; that the emerging unspoken set of rules between girls are complex to comprehend and that it takes a greater length of time to process what she hears. I was once told to look carefully, ‘the wider the smile, the greater the anxiety!’ Sure enough the nods are there, the pleasing smile and a very rapid ‘yes’ response. All successful ways of keeping up the pretence but ‘masking is not the same as coping’ (Starnes, 2015) .

Wherever Sophia feels fearful of what people may think of her if she shows her true self, her mask is on. This is emotionally draining and takes considerable effort to uphold. Many have written about the ‘coke bottle effect’ and after a long period of being churned and holding it all in, there has to be an explosion! This is a really distressing experience for all involved but for the child it can have a detrimental impact on their wellbeing and self-esteem. I remember clearly someone asking Sophia, if she had a superpower, what would it be? Her response was to be ‘invisible’. In some ways this makes me feel sad but who says she has to be centre stage? Why does there have to be spectators?

When expectations or demands are made of her that she does not feel comfortable with; they are met with an intense sense of fear and panic but also a desire to be accepted. It is the survival response known as fawning (Walker, 2013) which is triggered in these circumstances and in order to stay safe, Sophia will appease what is asked of her whilst attending to the needs of others. Whilst it appears difficult to ascertain her true feelings, when you look beneath the surface and really listen to Sophia’s voice, her strengths and talents shine through!