Hidden Struggles

I have two children, both of whom are autistic yet their lives are very different. One attended a specialist nursery, a primary school for complex needs and a high school for young people with high additional needs.

Meanwhile his sister struggled in the local nursery, through seven years of mainstream primary and just one year of high school before having a mental breakdown and having to be home educated.

My son’s needs are visible, acknowledged, understood.

His sister’s are hidden, dismissed and misunderstood.

Yet both are every bit as valid as the other.

If I park in a disabled parking spot with my son no-one stares or questions me and some even ask if they can assist me. If I park in that same spot and help my daughter out of the car, people look at me, question me and even accuse me of using a space I’m not entitled to use.

All because her struggles are hidden.

My son’s anxiety presents in vocalising loudly, physically thrashing and challenging behaviour. That same anxiety in his sister manifests as silence, fear and an inability to move. Both are just as dangerous and just as hard to cope with.

My son’s inability to communicate is seen in his use of a speech device that people love and are curious about. My daughter’s communication struggles (selective mutism) are viewed as ignorance and stubbornness instead. Neither can speak yet one is accepted while the other is ignored.

My son’s love of all foods is seen as positive even when he wants to eat inedible items, while his sister’s limited diet is viewed as her being fussy even though she’s the one with a diagnosed eating disorder.

All because her struggles are hidden.

One received individual tailored education support throughout his education while the other was deemed to not be trying enough or not causing enough trouble to be noticed. One gets sensory breaks, access to a wonderful sensory room and has fidget toys at all times. The other was left without anything, expected to blend in with their peers and learnt that masking their issues was the only way to be accepted.

Now one is laughing, thriving, keen to go places, full of life.

While the other struggles to leave her room, is unable to access education and sees isolation as the only way to cope.

The difference isn’t the diagnosis.

The difference is that one has more visible struggles while the other ‘looks normal’ so her hidden struggles are just never seen.

Which just leaves her feeling invisible and doesn’t help her at all.