Quality of Life – who gets to decide?

`…are able-bodied, neuro-typical people the standard by which we should all be judged? …`

Quality of life is a very important subject.  People have the right to expect a decent quality of life, but the debate as to what an acceptable quality of life is rages on.  Some people want the right to be able to kill themselves if they feel their quality of life has dropped too low, yet other people in the same situation argue that they have a perfectly good quality of life. But what about people with autism?  What is their quality of life like?  And who has the right to decide what constitutes a decent quality of life?

Some people with autism struggle greatly when it comes to socialising and making friends.  They might find relationships hard, and perhaps not have many of them.  Depending on where they fall on the spectrum they could be unable to dress themselves, go out by themselves, or even have to wear nappies.  Several people make the argument that all these factors combined constitute a poor quality of life.  This can give life to the argument that if people with severe disabilities have no quality of life then remaining alive is actually not a positive thing for them.  And the argument that people should terminate babies they know to be disabled, is used fairly often.  Often what will happen is people will make judgements on other people’s lives, based solely on what they would want, or expect out of their own life.  They don’t take in to account the autistic persons relationship with their family, or what they have going on inside their own mind, or even the small things in life that might entertain or intrigue them.  They simply make a decision that if they would not want the life of an autistic person, that all autistic people must have unbearable lives.

A counter argument made by people with autism – and other people with various disabilities – is that even though their lives may not conform to normal standards, and may be hard at times, this doesn’t mean that they are worthless, and don’t have the same quality, and value as neuro-typical lives.  Several people with autism argue that the media image of autism as a virus, or disease that damages families, simply serves to enforce this concept of autistic people having no quality of life. The main argument is that there is not one single standard of life that everybody can be judged by – different people want, and need different things out of life, and therefore quality of life is subjective.

The conclusion that can be drawn from these arguments appears to be that quality of life is something that should be decided by the individual.  If people with autism feel that there is enough in their life to keep them happy, then other people don’t have the right to imply that autistic people are not emotionally, and intellectually intelligent enough to make decisions about the quality of their own life.  One person cannot take what they want in life, and judge another person by those standards.  This is something many autistic people have said – and in the case of quality of life, it appears to be even more relevant than ever.