Autonomy and self-determination are principles that we talk a lot about within the neurodiversity movement, but what do we mean by this? How is this relevant to Autistic people?
“The autonomy of persons to make decisions, while taking responsibility for those decisions and respecting the autonomy of others, is to be respected. For persons who are not capable of exercising autonomy, special measures are to be taken to protect their rights and interests.”– Article 5 of the Universal Declaration on Bioethics and Human Rights (developed by UNESCO)
Unfortunately, it’s the second sentence of that article which becomes problematic for us because many of us are presumed to be incapable of exercising autonomy. This leads to people making decisions on their behalf without any input from that person.
This is especially true when the individual is an autistic child or non-speaking Autistic adult. The majority of therapies currently offered to autistic children involves conditioned compliance. This runs completely counter to the principle of autonomy. I don’t want to write too much about therapy in this post because that is a topic that will be addressed later in this series of posts, but I do want to ask people who are reading this to consider the impact of conditioned compliance through using my own childhood as an example.
While I was fortunate in that I was never subjected to some of the more traumatising therapies aimed at addressing autistic behaviour, I did have very authoritarian parents that tended to use many of the same techniques that are used in compliance-based therapies. Things that I enjoyed were all used as incentives for compliance, and punishment was inflicted for any transgression of the numerous – and often changing – rules.
For me, this meant that for most of my childhood, I was very compliant. I did what I was told, and I lived in fear that not understanding an instruction would lead to punishment which it often did. I didn’t make decisions for myself, and I didn’t even learn how to make decisions because I was never given the opportunity to learn that skill.
Until I couldn’t live like that anymore.
I left before I should have age-wise. I struggled for years to figure out how to make my own decisions, and how to avoid being gross people who could somehow spot that my years of conditioned compliance meant that I was very susceptible to manipulation.
Now, I’m defiant and I can make my own decisions , deliberately falling through the cracks in the system in order to preserve my autonomy.
Turning back to the general theme of autonomy: Think of the Autistic children and adults who are presumed incompetent. Think of those who are never offered the opportunity to make their own decisions regarding their own wellbeing. Think of the frustration, fear and powerlessness that people who aren’t in control of their own lives feel. Think of how hard it is to learn the skills needed for an independent life when every part of your life is controlled by someone other than you.
It doesn’t need to be this way. When you presume competence in Autistic people, you give us the opportunity to learn to make our own decisions and the opportunity to learn from the consequences of those decisions – not the consequences set by others, but the natural consequences of our actions and decisions. We learn to make better decisions that way. We learn to live autonomous lives.
This is part of a series of posts addressing themes from the neurodiversity movement and paradigm which will be published during the course of April 2016. To read the rest of the posts, please click here.