Autism and Ehlers Danlos Syndrome type 3.

My girl has Autism.
I have spent alot of her life focusing on this and trying to make the world an easier place for her.

My girl has Ehlers Danlos Syndrome, hypermobility type.
She was born with this condition but not officially diagnosed until she was 7.
I try not to focus so much on this because we have adapted our life to manage it and I try to promote independance..
But…
….as she is getting older, it seems to be getting worse.

My girl dislocates her joints daily.
Her fingers and toes come out with almost every movement. It has become so frequent she just pops them back in like it is a normal thing to do.
Her jaw dislocates every time she opens her mouth to do anything more than speak.
Her shoulder has become loose and has dislocated 3 times this year.
Her knees are so hypermobile that they dislocate whenever her legs are straight.

Everything is too bendy.
It doesn’t sound like a bad thing, but she uses 4 times more energy than we do just to stand and keep her joints stable enough to keep her balance.
Her neck is extremely bendy, makes popping/cracking noises every time she moves her head, and causes huge amounts of pain.
Her elbows, wrists, knees, hips and shoulders are so bendy that her strength is greatly reduced and fine motor skills are difficult.

My girls mobility is reduced.
She cannot walk long distances, she uses a wheelchair.
Walking causes pain in her hips, ankles and knees, often causing her to drop to the floor or fall over.

It affects so much.
She cannot sit on a chair without a back as her core muscle strength is very low.
She requires seating so she can lean and rest her head.
She suffers from digestive problems requiring medications.
Her pelvic floor muscles are weak.
Fatigue levels are high.
Confusion and anxiety appear with the fatigue.
Tinnitus and headaches are frequent from the jaw dislocations.
She is covered in bruises as EDS makes her bruise from even a small knock.
She cannot have a bath, or go swimming without 1-1 supervision as she has Postural Orthostatic Tachycardia Syndrome, so feels ill, dizzy and faint with temperature change.

So, what is this to do with Autism?
Everything.

Some of the above problems could be helped by wearing splints and supports……but the sensory processing problems stop her from being able to wear tight things.
Some of the above problems could be helped by regular exercise……but lack of understanding means my girl doesn’t realise how important it is.
Some of the above problems could be help……if my girl could tell me what was wrong.

After spending 12 years observing my girl I can tell when she is in pain.
I don’t always get it right, infact I didn’t realise her shoulder was dislocated over the weekend until I got her ready for a bath.
She just doesn’t tell me.

My girl does not understand the need to tell anyone when she is in pain.
It may be that she has suffered pain all of her life and so it isn’t different for her.
It might be that she has such a high pain threshold that she doesn’t feel it like we would. (I certainly wouldn’t be able to dislocate my joints and not realise like she does!).
It may be she doesn’t realise that her pain can be lessened if we know about it.
It may be just another one of those ‘Autism things’.

Having Autism and having another problem is always going to be difficult.
Communication is such a vital component in deciphering any pain.
As my girl grows, her meltdowns increasing, I wonder whether infact the meltdowns are a way of her communicating the level of pain she feels.

I don’t know how to help her.
She refuses to use any sort of pain scales, or any emotion faces or words.
For now, all I can do is observe and manage her pain as best as I can and hope that one day she will begin to help me understand.

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