Behavioural Autonomy and Seizures

What is Autonomy?
Autonomy is one of those words that is hard to put your finger on. It comes from the Greek words "nomos" meaning "law" and "auto" meaning "self". So together they literally mean to "make your own laws". More generally, it is often used to mean "independent" or "self-governed".

Degrees of Autonomy
There are varying degrees of autonomy. On one extreme you have no autonomy. In my point-of-view, complete loss of autonomy equals death. On the other extreme you have absolute autonomy. This is a bit more theoretical and probably isn't possible. There are always mild disruptions of autonomy. This is both necessary and good. Basically, this keeps things from doing whatever they want to do, whenever you want to do it. Mild disruptions in autonomy usually come in the form of "rules" or "laws"- whether they be laws of physics, parental laws, club rules, etc. Of course, some regions/countries/groups have rules and laws that greatly affect one's autonomy, but this is for another post on another blog.

This is, however, a blog on epilepsy. So, I'll focus my discussion on how autonomy is affected by seizures (feel free to argue with me here).

Autonomy and Epilepsy
One of the great difficulties surrounding epilepsy is the effect of seizures on autonomy.

Primary Autonomy
During a seizure, individuals lose their ability to interact with the world around them in a meaningful way*. This is a violation of our most basic sense of autonomy: that we will be able to consciously control our own actions. (*except during a simple partial seizure)

To regain this loss of autonomy, we need better treatments for seizures. The goal that clinicians and researchers are continually striving towards is to achieve seizure freedom in 100% of patients.

Secondary Autonomy
Secondary autonomy is really one's freedom to go out. Individuals with epilepsy tend to go out less. Sometimes this is due to a fear of having a seizure in public. Often it is due to social stigmas against epilepsy which can make individuals with epilepsy feel very uncomfortable in certain situations. People tend to be afraid of epilepsy and this is mostly due to lack of understanding. There should be no more stigma attached to epilepsy than there is to a disorder like asthma.

To a large extent, I think that improving public education and awareness of epilepsy will significantly improve the secondary autonomy of those living with epilepsy. This is changing (slowly but surely) for the better.

Tertiary Autonomy
Tertiary autonomy is the autonomy of the family. Families living with epilepsy tend to spend most of their time/energy concerned with seizures and this really impacts how often they go out and do the things they would otherwise do. When they do go out, it tends to be related to epilepsy (medical appointments, etc.).

Once again, we need better treatment for seizures. As long as people are having seizures, their families will be concerned and the family dynamic will be changed.

The Conference
I am a member of the Society for Autonomous Neurodynamics which holds an annual meeting called "Principles of Autonomous Neurodynamics". The name can be a bit intimidating, but the conference is the exact opposite- it's a great group of biologists, physicists, computer programmers, individuals living with epilepsy, clinicians, etc. from around the world getting together to discuss the brain and "autonomy" at every level imaginable. Check out the link above if you are interested.

Have an autonomous day!

Kirk.