You don’t see how hyperactive she gets when there is loud music playing; practically bouncing off the walls.
You don’t see how she rolls around on the tickle grass in gleeful ecstasy in the town park.
You don’t see how distressed she gets when the shower is 2 degrees cooler in temperature than normal. You don’t watch her reaction when friends are late, or plans are slightly delayed. You don’t see how when she gets overwhelmed she rocks on the floor with her hands in her ears, curled into a ball. You don’t see how she practically bumps into people when we are at the shopping centre because she can only concentrate on two steps ahead, and how a simple choice of two hair brushes causes her to melt down.
The fluorescent lights, the close proximity of people, the smells, the noise – shopping centres are a sensory loaded nightmare and trips out need to be planned and executed with military precision.
You don’t see how when she gets home from school and it’s been a hot day, she is screaming before I have even closed the car door because it has taken every inch of her effort to keep it together while the heat has overloaded her system and she’s had to manage group work as well as hall time and she is just exhausted.
You don’t see how when she gets a paper cut this causes her to have four-hour long melt downs because she feels pain so acutely.
You don’t see how when she is invited by another child her age to a play date she gets so excited; but plans everything to a tee because this is how she grasps social situations and when the plans don’t go to her plan (as is the case with natural flowing friendships) she spends the evening sobbing into her bed; disappointed and crushed and confused.
You don’t see how distressed she gets when she has sand from the beach on her skin that she cannot remove. You don’t see how much negotiation goes on when trying to find clothes for her that she will wear that aren’t too tight, loose, tickly, prickly, annoying and/or sticky.
You don’t see how much screaming her sisters have to be tolerant to, understanding of and yet still they show her unending love and compassion.
You don’t see her mornings of constant refusal of any request in the attempt to regain control of her world when her anxiety is rife and she’s feeling incredibly unsure and overloaded.
You don’t see how she attempts to control any play with her sisters as a means of managing social interaction to a level that makes sense to her.
You don’t see how she uses an infantile voice and pretends to be a small child or a small animal as a means of coping when she’s feeling anxious.
You don’t see how she complains sometimes of being lonely at school however you observe her classmates attempting to include her but she just does not pick up on the social cues enough to realise she can join in.
You don’t see all of this because autism in girls does not look the way autism in boys does, necessarily.
You don’t see all of this because of the hours every day her father and I spend along with her teachers and specialists and therapists spend navigating her world with her, helping her to make sense and fit in.
You don’t see this because you find it awkward to ask perhaps, and think it’s just easier to not talk about. You don’t see all of this because she doesn’t trust you enough to let you in to her intimate circle where she can shed her pretenses and just unravel, after being tightly woven all day.
You don’t see the hours a week her father and I spend reading, researching and learning new ways to help her manage her world with more ease. You don’t see us pouring over information and grasping at any straw we can to help make her life, and our lives even a little bit happier.
We are teaching her how to self-regulate. This means we are teaching her how to have chill-out time after triggering and taxing events.
But you don’t see the effort she puts in every day just to function and live her life the fullest she can: because you don’t see her, for who she is.
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