As parent carers (and their representatives), we often ask professionals to avoid using jargon or acronyms. Apart from the fact that these make understanding difficult, acronyms in particular can mean many things.
In a recent example, my daughter was asked by her GP if she was using a wheelchair due to SPD.
Both of us immediately thought he meant “Sensory Processing Disorder” and were quite confused as to why that would require a wheelchair. It is one of her diagnoses.
In fact, he meant “Symphysis Pubis Dysfunction”. She was pregnant, and it was a reasonable assumption (correct, but not the primary reason for her wheelchair use).
Moral of the story: avoid acronyms!
But today I am thinking about language that parent carers begin to use which may not sound like jargon but is… and in the same way as medical or professional jargon, there is a huge risk that “lay people” will not understand. In this case, “lay people” include extended family, parents whose children do not have additional needs, teachers, therapists, doctors and all kinds of professionals.
Are we shooting ourselves in the foot by using such language, that feels really relevant, but that opens us up to misunderstanding and can even diminish our children’s needs in the eyes of others?
If you are the parent of a child/young person suffering from anxiety, or who has autistic or ADHD traits, you will be familiar with the notion of “masking”.
To ‘mask’ or to ‘camouflage’ means to hide or disguise parts of oneself in order to better fit in with those around you. It is an unconscious strategy all humans develop whilst growing up in order to connect with those around us.
However, for us autistic folk the strategy is often much more ingrained and harmful to our wellbeing and health. Because our social norms are different to others around us, we often experience greater pressure to hide our true selves and to fit into that non-autistic culture.Dr Hannah Belcher, from the NAS website
“Masking” is a very real and traumatising strategy employed by any child who is suffering from anxiety, so it’s no wonder that parent carers use the word so frequently once they understand it. It describes the child who is “fine in school”, then arrives home sobbing uncontrollably, or so exhausted that they curl up on a sofa and stare into space for hours, or comes home screaming abuse at mum, hitting or breaking anything in their way.
My biggest lesson about masking has been the following: most people cannot control how, where or when they mask. Many are not even aware that they are doing it. This is particularly true of children.
Those of you who have been following me on my Tugboat journey will have gathered that I like to explore different perspectives on the same issue. Today is no different!
If you are a professional…
When you hear a parent talk repeatedly and with passion about something like masking, take a breath. Do not assume that they have jumped on a bandwagon, have “self-diagnosed” their child.
Try this as a starting point:
In front of you is a parent whose child is not happy. In response, this caring parent has possibly tried to ask for help, has researched their child’s behaviours and characteristics and has learned from other parents, from internet searches, from support groups. This is valuable evidence that can help you help the child – if only you accept it.
If you are a parent…
It’s so easy to overuse a term that fits so beautifully once you find it. And before you know it, in the world of social media, that word is EVERYWHERE. But do all those using it truly understand it?
I think it’s probably fair to say that most people have a vague understanding of “masking” now, in a way that they did not five years ago. But this means that it has become overused and for the most traumatised children, the word has become devalued. Don’t forget, too, that every single human being masks – it’s the reason we are able to be social creatures. But in our world of additional needs, we use the word to describe a child in fight/flight mode, who is leaning on a survival strategy day in day out. That causes trauma and will lead to serious difficulties.
In other situations, you will be talking to people who have no idea what you mean when you use the word. Often, these will be professionals, and they will be listening to you and coming to their own conclusions about the meaning. “Masking” is an active verb. It’s all too easy to understand it as a conscious choice made by an individual. So either the child has such good control of their emotions that they must be able to make other choices. Or they are defiant. Or they are manipulative.
It is our responsibility as parent carers, and as the person choosing the words we use, to ensure that they are understood in the way we intend.
Whenever I am talking to someone about my child’s “masking”, I start with an explanation of the term. I explain that in the case of an autistic child, masking is very much like a survival strategy that keeps them safe.
It’s rare that they are aware of doing it, only how very tired they are when they finally find themselves in a safe space.
For those children who are aware that they mask, many cannot control it. This adds a level of panic because they are not behaving in a manner true to themselves, but nor can they change their behaviour.
When the “mask” comes off, many children have a violently emotional reaction. Have you ever put your palm over a tap to stop the water coming out? When you remove your hand, how strong is the flow of water?
Most of our children struggle with communication and their emotions – far more so than “average” children. So when that mask comes off and they feel a gush of complex and often contradictory emotion, they are overwhelmed. It’s deeply frightening. So it’s no wonder that we parents are suddenly faced with children in meltdown or shutdown states.
Now I’ve explained what I mean by masking, I will try and take the time to check in with the person I’m speaking to. How does what I’ve said make them feel? Is it something they recognise? Have I made them think a little differently? It’s really worthwhile asking those questions out loud. Apart from anything else, if you treat someone in the room as an equal, they are rather compelled to do the same to you!
Only at this point will you be able to have a real discussion because you are now all speaking the same language.
Jargon goes both ways
Don’t forget to check your jargon! You may not even realise the words you are using are jargon to someone else.