One of the popular catch phrases in my profession is that ‘people are the experts in their own lives’. In the social work profession, we acknowledge that when it comes to talking about experiences, identifying goals and deciding what happens, clients know best. This is also called self-determination.
When it comes to autistic people, this seems to be a really hard concept for people to accept. The mainstream media, many parent support groups, education departments, researchers and professionals who work with autistic people, seem to have a lot of trouble seeing autistic people as the experts in their own lives.
Justifications for research on autistic children and the ‘need’ for them to undergo behaviour modification therapies include that autistic children experience ‘challenging behaviours’, have ‘difficulty coping with peers’ and are ‘disruptive’ or ‘aggressive’. Time is spent trying to improve their eye contact, sit still in class, say ‘hello’ and ‘goodbye’ and ‘respond appropriately’. Whose goals are these? Whose purpose do they serve?
What do autistic people want? Do autistic children want to sit still? Do they want to make eye contact or not? What does it feel like for them when they do? What are they trying to communicate when they are ‘disruptive’? What frustrations are they feeling when they become ‘aggressive’? Do they want to participate in research into the use of hormones and other drugs that will alter the way they relate to others?
You might be interested to know that when autistic people raise these sorts of questions, they are frequently told that their concerns are not valid because of the ‘overwhelmingly’ large amount of carers and parents of autistic children who testify to the need for them to change.
Why are autistic people not allowed to be the experts in their own lives? Why is our self-determination secondary to the needs of non-autistic people?