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 For years people have campaigned to have this rescinded, but as yet it has not been.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.
If somebody were to take a cure for autism they would have to be able to make an informed decision beforehand, so at what age are you able to make an informed decision about something that changes your entire emotional and mental state? Surely not as a toddler or young child? And if somebody was able to decide this in their early teens – which I imagine would be the lowest possible age for making such a decision – then they would have already lived for thirteen or fourteen years as a person who has autism. What would happen to them if they were to suddenly change, and become neuro-typical aged fourteen?
I imagine if there was to be a cure it would have to be a gradual process rather than happening overnight, as much to give room for emotional adjustment as for practicality. But it could get quite complicated; for example if somebody is thirteen, and their parents desperately want them to be cured of their autism. Let`s paint a bit of a dark, but recognisable picture: a teenager has frequent meltdowns, they are in trouble at school, they’ve hit their parents, they sometimes bang their head off a wall, and feel sick with stress every day. I am sure anybody who knows autism will understand that this isn’t necessarily a particularly far–fetched image. For all of the positives of my own autism, it is a picture I recognise quite well.
Now say they were taken to a hospital, and told that they could be cured of their autism. The negative traits would eventually stop, but the teenagers refuses. Would their parents be able to over-rule them? Would a medical professional? What about an adult who is deemed not to have full capacity? Would they have the final say over whether they are cured or not? The more you think about it the more you begin to get in to very difficult territory.
What if somebody has a child who can’t give their consent verbally? Would that child be screaming out to be cured inside their head, or would they be happy and content in their life with no desire for a cure? It would fall in to the hands of parents and medical professionals to work this out. Making the wrong choice could be disastrous. Autism is not an illness, or a disease. Attempting to cure autism on somebody else’s behalf, without their consent, would be a highly contentious issue.
It is fairly evident from the points above that even though I say I don’t have anything against people who would like a cure for their own autism, I am not one of these people.
Perhaps I should explain this further; if somebody wants a cure for themselves, I don’t think they are a bad person. Nor do I think they are a bad influence on others. I don’t necessarily think that they hate themselves, or hate other people with autism. I think they are struggling, and haven’t been able to accept their autism.
Yes it is true that there are a lot of techniques that can make life easier for autistic people, but these won’t always work, and even if they do this doesn’t mean that life is always going to be easy. People have a right to personal opinions, of course.
What I am not a fan of though is actively searching for a cure as a main priority. I think there is an overwhelming majority of autistic people who don’t want a cure. The money that is put in to looking for one would be much better suited in being put to use for practical purposes; things that will actually help and support autistic people and their families.
Maybe it sounds hypocritical, but I am only human, and as open to being a hypocrite as anybody else. If you want a cure for your autism I have nothing against you, and I wouldn’t say anything bad about you, or to you. But neither would I want money or time to be actively spent on searching for a cure.
What people need to remember is this: there is a huge difference between a minority of autistic people desiring a cure for themselves as individuals, and large groups of neuro-typical people taking it upon themselves to attempt to cure autism, or eradicate autism altogether. You need to keep in mind that this is from the point of view of somebody who believes in, and advocate for neurodiversity. In my view the autistic mind is not broken or deficient, it is just a variant. But obviously if somebody doesn’t believe, or disapproves of neurodiversity they will think differently. This is quite a complex topic, but hopefully my third article will be able to shed some light on it.
Comments on individual articles in this series are closed but we encourage readers to add their thoughts on the opening article to this series that can be found here.