Regular followers know that Little Miss H is autistic. She is a master masker and the way her autism affects her is not always readily visible to others. She internalises. So a child who flaps externalises their anxiety or over-stimulation, Little Miss H has the same reaction to various stimuli but instead of flapping her hand/arm, her stomach muscles do the action instead so her innards clench and squirm, she gets extreme butterflies in her tummy and her heart beats faster, her reaction is private, hidden but no less there and no less real.
I can read her signs and can see the stress usually, but I am her mother and I know her well. Others generally can’t.
She’s a master masker and it can take years to see the real her especially if you only see her occasionally.
We go to appointments and the moment the practitioner appears, her personality changes. Her mood shifts and her behaviour alters. She’s Selective Mute as well, so often she folds in on herself both physically and vocally – her head shrinks down in between her shoulders like a turtle’s neck retracting, her head tilts down and she barely looks up, she positions herself behind me or into my side and goes quiet, her voice changes, both tone and timbre. Sometimes timid, sometimes gruff. She becomes I child I don’t recognise. I’m beginning to get familiar with some aspects of these sides of her and learning ways to interact with her when she is like this but it’s not something we get to practice as it only happens in certain situations which we can’t replicate so it’s not something I am familiar with enough to be the experienced confident mother. I’m practicing on the job if you like! Sometimes she’s compliant but shy, sometimes she’s aggressively resistant, sometimes she’s silent, sometimes she answers questions, sometimes she doesn’t tell the truth as she just says what she thinks they want to hear, sometimes she shouts, sometimes she whispers. Sometimes she’s scared, sometimes she’s angry, sometimes (though rarely) she’s fine!
I never know which way it is going to go, it all depends on so many variables; who else is in the waiting room, time of day of appointment, whether she’s hot, hungry, thirsty, how her day has gone so far, whether the practitioner is a male or female, whether they are warm and welcoming or cool and professional, how they greet us, and so on….. She can sense when someone is analytical rather than open and she feels on edge by that.
It’s not like she shifts into one single other persona that I recognise and am familiar with – her reaction is unpredictable and erratic and as a result I’m working it out as I go, whilst also trying to achieve whatever the appointment is about. I’m testing the waters with my daughter as I go, walking on egg shells trying to prevent a meltdown, trying to focus on getting the important information across, trying to maximise the preciously short appointment time as any future appointments or help depend on this one achieving its aim….
I therefore can appear surprised, distracted and anxious – but that’s because I’m in the room with a stranger and as a mother to that stranger I’m having to make it up as I go along. I’m thrown and I don’t know what is right. If my ‘parenting’ in that moment is unsuccessful it’s because it’s all new to me and I’m feeling around trying to find what works. It doesn’t mean I am a bad parent. If I contradict my daughter it’s because I’m telling the truth and am not being dismissive or neurotic.
So to the practitioner I say;
If I speak to my daughter in a certain way, say certain words, try a certain strategy it’s because it HAS worked before – that’s why I look surprised and flounder when it doesn’t work in front of you.
I feel the full weight of your judgement on me. I’ve been blamed too often for my daughter’s hidden disability so yes I am anxious when familiar territory abandons and fails me.
So please understand that if I appear anxious it’s as a RESULT of my daughter’s erratic behaviour and not as you so readily presume, the cause.