My Autism Child was recently admitted to hospital and once again a long, tiresome week of training the "Autism Uneducated" occurred. Talk about frustrating! It seems to me that everybody knows the word - Autism - but they really haven't a clue about what it means to be a child/individual with it. As parents we will forever be advocating for our children with Autism but sometimes I feel like the "Autism Whisperer" or the "Autism Interpreter". Perhaps I'd be better to start the conversation with "Excuse me, I'm a visitor here. Do you speak Autism?"
As I speak to nurses, doctors, specialists, ward staff and orderlies about why my Autism child can't/won't comply with a task I can almost see the words "over reacting Mother" stand out on their forehead. They nod politely but their eyes "glaze over" when I mention the "A" word.... I know they're probably wishing they were anywhere else but standing in front of me.
Autism parents know that for our children Autism comes FIRST in everything, and must always be considered in every situation before anything else is addressed.
Sensory issues are especially noticeable in a hospital environment. So while wearing a brace may be standard treatment for a back condition, the rigid and constrictive feel of the brace, the weight of it, the noise it makes when you sit or stand, the cold metal against skin etc etc just can't be tolerated - and more importantly can't be ignored - by my autism child. He is so agitated by the feel of the brace he can't focus on anything else. Not on TV or his DS4 or his iPod.
The stress and anxiety brought on by the sensory issues of the brace caused ulcers to erupt in his mouth (a common stress symptom for our Autism child) and so the pain of the ulcers over-rode all other pain and sensation. So when asked about his back pain level (1 -10) he answered "5, but my mouth hurts".
No food or drink could be consumed - no sleep happened - no other thought was had by my Autism child except "my mouth hurts". When the mouth ulcers were mentioned they were overlooked by medical staff as being insignificant in the big scheme of things. The sore mouth wasn't investigated or treated for 3 days (despite my constant 'nagging') while they focussed on his back. Of course all medical staff reprimanded my Autism child about his lack of fluid intake, lack of food intake and not sleeping for 3 days. No-one really gets the impact of sensory issues on our kids!
Aaarrgghhh! Silly professionals - sometimes they just can't see past their textbooks!
Nelle Frances is the mother of a 20 year old with Asperger's Syndrome, a Special Needs Educator and Author of the Ben and His Helmet series of books for children with Autism. Her site http://www.autismchild.org offers resources, strategies, and articles on Autism and Aspergers Syndrome for parents and teachers.
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