Autism and Ehlers-Danlos type 3.

Somedays the Autism takes a backseat.
The Ehlers-Danlos syndrome (type 3) takes over…..
….not completely though as the Autism won’t allow the EDS to tell us about the pain.

They don’t get along together.
They fight for attention and sometimes I don’t know where one ends and one begins.
Is she in pain or is it a sensory behaviour?
Is she trying to tell me something or using the pain as a decoy?

So, so hard.

Seeing her writhe about on her bed for 2 hours with pain in her hips and knees.
Refusing to be held, be hugged, listen as I explain what she is feeling.
Watching her lose her temper, repetitively banging on the bedroom wall.
Shouting that she is not sleeping tonight.
Her painful, restless legs dancing to a song of their own.

My girl will not tell us about pain.
Sometimes I wonder if she has just become used to it as she has always suffered.
Sometimes I think it is Autism not allowing her to tell us.
We don’t know.
We do know that she has no recognition of emotion, does she even know that pain is a negative feeling that we can help with?

I know when she is in pain.
I see it.
I don’t know what I see, I couldn’t describe it to you as it is so subtle, but I know.
Usually it is severe by the point that we realise and then the Autism takes over and my girl loses all control.

Somedays Autism and EDS are the same.
Somedays I have no idea which behaviour is from what.

Somedays I hate them both.


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