My Asperger Dad was recently admitted to hospital and once again a long, tiresome week of training the "ASD Uneducated" occurred. Talk about frustrating! It seems to me that everybody knows the words – Autism Spectrum Disorder - but they really haven't a clue about what it means to be an individual with it. As Carers we will forever be advocating for our loved ones with ASD but sometimes I feel like the "Asperger 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 ASD?”
As I speak to nurses, doctors, specialists, ward staff and orderlies about why my Dad can’t or won’t comply with a task I can almost see the words “over reacting Carer” 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.
Carers know that for our loved ones, ASD 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. just can't be tolerated - and more importantly can't be ignored - by my Asperger Dad. He is so agitated by the feel of the brace he can’t focus on anything else. Not on TV, the newspaper or an iPad.
The stress and anxiety brought on by the sensory issues of the brace caused ulcers in his mouth (a common stress symptom for Dad) 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 stayed with Dad 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 the medical staff all reprimanded my ASD Dad 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 ASD individuals! Silly professionals - sometimes they just can't see past their textbooks!
Written in 2011 by Nelle about her ASD Dad's hospital experience.