So, why does everyone with Autistic Spectrum Conditions seem to be under the age of 50? Well, Brookdale currently provide in-patient and residential services to some 115 people who need short term help with mental health crisis, every person we support also has an Autistic Spectrum Condition. Looking back through our many hundreds of referrals only 1% are over the age of 50. So, anyway, I saw this yesterday http://www.bbc.co.uk/news/uk-scotland-24206322. It reminded me of a man I had the pleasure of working with many years ago.
I was a general trained nurse in the East End of London. I had to work a stint on the most horrendous hospital ward for elderly people as a student. It was my “Psycho Geriatric” placement. Nice name eh? A ward full of old but dangerous psychos; I was envisaging psychopaths with axes on very fast zimmer frames trying to attack me! Anyway, on my first day I made sure I had comfortable shoes and loose clothing on, in case I had to run away or break free from a killer grip. As it happens, it turned out to be an environment where each patient was safely tipped back in a geriatric chair with a tray fastened close to their tummies so they could barely move! So, no chance of being chased around the ward. Patients were, in the main, just pleasantly confused. God only knows what crime they had committed to receive a sentence in that place!
There was a man, Joe who was in his late 80’s. I chose to do my case study on him. (Part of the training and assessment process). Anyway, I chose Joe because no one seemed to like him very much, he was ritualistic and considered stubborn and awkward. His file was marked as ‘dementia’. I am no doctor so who was I to amend a diagnosis, but I was not having it!! He was a clever man with very narrow interests and his knowledge of all things space and planets was phenomenal. I picked this up completely by accident one day when I was tidying him up a little and the lights went on and off and I said, I wonder what caused that eclipse? He was on me like a leach, “do you know about total lunar eclipse of 1953?” I said no, and he launched in to great detail. It blew me away; I had never seen Joe like this before it was like a key to a lock. I then spent time finding second hand books for him that I thought he might like and finding out about things I could chat with him about. He was amazing.
Many months later Joe had a visitor which was unusual. It was a distant cousin who explained to me that Joe was the cleverest person in their family and was affectionately known as the Professor. Yet he never managed hold down a job, never got married or socialised with friends. His jobs were all manual work such as unloading at the docks etc. She explained how he used to always be in his room reading space books and watching documentaries in later life. She also said that the ritualistic and unsociable behaviours he was exhibiting in the ward, were exactly the same as ever, and she could see no reason why anyone would think he had dementia.
I liked Joe, and even though I was only a whippersnapper at 19, I knew, absolutely, this man was unique. I just didn’t know why, now I realise he probably had Asperger’s Syndrome, I would bet my life on it!
So where are all the Joe’s out there? Are they misdiagnosed, undiagnosed or has life been so stressful due to not being understood, they have died young?
For Joe’s of today, would his uniqueness be recognised when he became known to services, or would the fact that he was frail and elderly override everything else and he would become just another person using older people’s care services? Why does it matter? It matters because anyone working with a Joe in any services needs to be trained to understand his communication and support needs appropriately. If not, this 2013 Joe may quickly get labelled as, cantankerous, awkward, non-compliant, unfriendly or even acquire a dementia label.
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