dementia versus autism

As Marjorie says, dementia and autism are very very different in their impact on the sufferers and those around them. I watched my father die of dementia. The burden placed on my mother and other carers was unbearable and enormous. He became aggressive, incontinent, incapable, angry, confused etc etc. He died in a EMI hospital which was a modern version of Bedlam.

I  now believe that he had ASD all his life, that was never recognised, so he spent a life on anti-depressants and at odds with the world. I suspect that his medication may have contributed to the dementia.

Life on the spectrum in old age without dementia is very different and I suspect that many people in this situation would reject any attempt at befriending as many people will have spent most of their life isolated and alienated from society. I wouldn't fancy trying to befriend such a person - you'll struggle to train them to be more civil if they have spent their life anti-socially. Other sufferers will have been desperately lonely all their life but, if they don't emerge from that before old age then they may be unable to make the move at that point.

This brings us back to the point of whether we have to fit into society or whether society has to bend to suit us. Ultimately, I think it is in our own interests to make the first move and to build networks of friends before we become too old.

Dementia is very different, in my experience. I had one elderly relative, who drifted into a true second childhood. She became like a five year old, delighted by little gifts, incapable of looking after herself, in terms of food, drink, cleanliness. She became entirely dependent on family, care workers and ultimately needed permanent residential care.

My mother, on the other hand, whom I believe now was also on the spectrum, became aggressive, obstructive and difficult to manage. She was fiercely independent, to a very worrying level, long after she was totally unable to care for herself. She ultimately had to go into a care home, to maintain eating and drinking, but suffered from being in an overly social situation.

Dementia friends and other such interventions, tide people over the early stages of dementia, when they are still capable of many aspects of looking after themselves, but find it increasingly difficult. Can you imagine what it would be like to gradually begin to struggle with things you have done all your life, and not be able to grasp why you struggle. Things you did automatically drift out of your ability. You have to increasingly give up doing the things you used to enjoy and accept help from the children you looked after for so long. It is a painful, undignified loss of capacity, on the inevitable downward slope to loss of life.

Personally, I would rather die from some short sharp illness, than go through the slow decay, that is dementia.

This is a good point to make - and perhaps the reason for the imbalance is that the relatives of those with dementia remember the person as they once were. There is a terrible sense of loss as well as a media-friendly story. That is not to denigrate in any way the impact of dementia on carers or those enduring it.

There is no 'normal person' to remember when people are autistic, no one that people can identify with and think 'that could be me or my parents'. We are born autistic and are autistic all our lives, its not a condition because that implies something temporary.

I'm also wary of drawing parallels between dementia and autism because some people already conflate the two and say that we show signs similar to dementia and therefore our brains must work in a similar way. As someone struggling against the system to keep a full-time job, that is not an idea that i want to gain currency!