Leneh Buckle is autistic, an academic and a parent, although none of her children are autistic. Her biography for the conference handouts notes that as child she “was considered severely autistic and learning disabled. Having gained the communication and interaction skills she was predicted never to achieve, Leneh feels she has lost something very special in the process. Hence the title of her presentation.
Is increasing functionality always good?
Functionality is functional in practice.
Why increase functionality?
to minimize suffering
to maximise happiness
to increase autonomy
to increase distributive justice by sharing the benefits of society.
Autism Specific functionality
Enhancing communication or expression makes social interaction more rewarding for the child and for the carers. This makes them better carers which clearly benefits the child.
Enhancing independence and productivity has clear benefits for the autistic person.
Why not increase functionality?
Ignorance is bliss. No drive to communicate so no associated problems.
Cost or risk to benefit ratio has to take account of the risks associated with some treatments and their financial cost.
There is also the cost to the child in terms of loss of freedom and time to be a child. Some treatments are intensive and can interfere with an ordinary childhood.
There can be a loss of self esteem if your awareness of goals includes awareness of your inability to reach them.
Some treatments can be mentally invasive.
Superficial gains in communication can be deceptive.
Gains can raise expectations that cannot be met.
Identity can be effected. The feeling of being in between two worlds can make you more lonely.
There is also the possibility that normalization can lead to the loss of special skills and autistic traits that you value.
Having personal autonomy and being able to make decisions is good.
But autonomy requires communication which may require interventions to increase functionality.
Your sense of personhood is not just about autonomy in the social world. It is about autonomy over your inner world.
When making ethical decisions for others (eg parents and professionals making decisions for children) and determining their best interests, we should be clear about whether we are seeking to mitigate impairments or enhance existing predispositions.
Increased functionality should not happen at the expense of a loss of personal identity.
Increasing functionality is a good that should be measured against the yardstick of enhancing personal autonomy and self esteem while protecting a person’s sense of who they are.
I am afraid that my notes do not do justice to a very thought provoking presentation. At one level we can all harbour regrets for the loss of innocence that is an inevitable part of growing up. But for most of us this seems like a natural process, albeit one that is profoundly influenced by the social and cultural values of the society in which we are raised. But what of the autistic innocent who seems indifferent to or unaware of these values? How far should we intervene in order to engage them in these linked processes of socialization and acculturation? Buckle reminds us that the benefits of increased functionality in the social world are not automatically to be welcomed. They have to balanced against their costs.
There is another question as well. What about those people whose autism is so severe, or those who have what is sometimes termed severe learning difficulties or cognitive impairments? What does living the good life with autism mean for people whose level of dependency will always outweigh their potential for autonomy and independence? These questions were addressed by Virginia Bovell and Eva Feder Kittay in the next two presentations and will be the subject of future posts.