Neurodiversity – Part 2: Remaining whole

Whatever your take on person first language, people who have autism are undoubtedly autistic.  It is not a case of the person`s autism defining who they are, but something can be an integral part of somebody without having to define them – just the same as their skin colour or height.

If a cure did exist would enough effort be put in to making sure that the person remained whole, and complete after taking it?  Think back a few years to when lobotomies were commonly prescribe by doctors across the United States to treat all manner of conditions, and illnesses.  The commonly used argument for them was that they solved whatever problem it was they were prescribed for.  But the issue was that in the majority of cases they were not specific, and targeted enough.  Other aspects of what made the victim who they were, suffered.

A lot of people who had lobotomies and retained their ability to speak and function to a basic level (which a large number did not) report a feeling of emptiness, and never quite being a complete person again.  When compared to the testimony of people who’ve lost limbs, or even one or more of their senses, it becomes apparent that when a piece of the brain is removed, or altered it can have a much more profound, far-reaching and devastating effect than any physical injury.  Now despite this, many medical practitioners still believed that lobotomies were an effective treatment, or cure because they appeared to solve the problem on paper.  Even though there may be some supposedly “successful” results, it has become common knowledge that lobotomies are the medical equivalent of using a shotgun to open a bottle of wine; the bottle certainly won’t be closed anymore, but it will also be broken beyond repair.

I can’t say for certain that a supposed cure for autism would work the same way as a lobotomy, but it does concern me; the concept of taking away part of what makes a person who they are is unsettling, but if that person doesn’t like that element of themselves, then they may exercise their right to freedom and remove it any way.

But what worries me the most is the way the medical world regarded the process of lobotomising as an effective cure, and stood by it for so many years.  This makes me worry about what may happen if this hypothetical cure for autism did prove to be as damaging to the brain long-term.  Would professionals readily admit this, and abandon the treatment?  Or would they push forward, and continue to stand by it as they did with lobotomies?

The man who developed lobotomies was awarded a Nobel Prize for his work.  For years people have campaigned to have this rescinded, but as yet it has not been.  One argument that has been put forward in favour of not rescinding the prize is that at the time the process was acceptable; many people approved of it, and it was believed to work.

The point being that you can’t foresee how any new medical procedure will truly affect those who use it, or how it will be viewed by the world decades later.  Even those who believe in a cure for autism, and strongly campaign for it, must surely admit that it would be a huge gamble?

Whether it is one worth taking or not may depend on your perspective, but remember, many of the people campaigning for a cure for autism are not actually autistic, and are therefore seeking a cure on behalf of somebody else.

Issue of consent continues here.