My wife and I are both autistic (aspergers). I am higher functioning than my wife is a few areas.
She finds it hard to process verbal information, and often does so very slowly, especially with people she doesn't know. She has a high IQ, but just finds processing information face to face very hard.
Yesterday, I accompanied her to the local medical centre as she had a physical issue.
She needs me to speak on her behalf and to help her understand what is happening.
Please bear in mind that this centre picks up huge sums of money from the government and local councils for helping us poor AS people. In the neurotypical world they are considered THE AUTHORITY for helping us in our area.
Upon meeting the nurse, I explained that I would be needed to help my wife to understand what is going on.
After about 30 seconds, I was stunned when the nurse said to me (verbatim, whilst pointing aggressively at me): "You need to shut up and let her speak".
I tried very politely to explain that I had been my wife's carer for 8 years, and she literally wouldn't understand the majority of what she was saying.
The nurse replied with shouting "I KNOW when someone understands me and I KNOW your wife understands everything I am saying. You are deliberately trying to hold her back. Now shut up."
She then went on a rant at me, which was so intense it caused me physical pain.
My wife struggles so much with verbal comminucation that she sometimes cant even tell a bus driver where she wants to go, or order things in shops. She has communication support at work for even basic 5 minute meetings. I have tried everything in my power to help her. I don't want to act as her verbal carer, I have to out of necessity.
To be accused of holding her back by someone who has known her for less than 2 minutes is enormously insulting.
I didn't shout or anything, but I was extremely frustrated. My wife's carer worker was called and she then explained to the nurse that my wife has tremendous communication difficulties. At this point the nurse actually listened, but then began to tell a tall tale of how I had got abusive for absolutely no reason. The carer explained that I has AS, so it was automatically my fault. A "get out of jail free" card for a man hating, abusive nurse with too much ego to listen. The nurse was just doing her job apparently.
The result is that apparently I can no longer accompany my wife to the medical centre as I'm such a terrible man. To be honest I didn't even get abusive, my mind was reeling too much by the ridiculous nature of the conversation I was having, to even formulate any words.
I feel completely powerless as it is always us who are wrong. It doesn't matter how much crap they put us through, once you get a diagnosis, no one listens to you. You are an 85th class citizen.
It's deeply frustrating as I am highly educated, have held senior positions in companies and travelled to over 25 countries on my own. Once I got a diagnosis, I became an instant ret*d. Weird, huh?!?!
It isn't just me that have problems with them. All the AS people I know have have multiple problems with the centre.
We have tried to attend meeting with the local council. They don't listen, ever, at all. They really don't care. So long as the council is SEEN to be doing something, it's fine. Doesn't matter if that thing actually decreases the quality of our lives. So long as they can tick a box and say they are doing something.
It's hard enough having AS. We are pretty happy in ourselves, it just when we have to deal with the outside world. I find many people to be deeply unreceptive to our problems. To me they seem unintelligent, lazy, arrogant and hardhearted. To be honest they are everything they accuse us of: unempathic, rigid thinking, rude.
Unfortunately we need to keep attending, so that they we can continue to get the mediocre benefit/welfare payments, we need to have some quality of life, while I am supporting my wife; whilst they pick up millions for "helping" us and build lovely shiny new centres to expand their crazy empire. But trust me, if we ever won the lottery and didnt need them for financial help, I would love to sh*t through their letterbox.
I'm not looking for any solutions, just wanted to get this event off my chest and share it with some people who might understand.
Thanks for reading.
25 Feb 2015, 1:09 pm
