March 18, 2015

Issue of consent?

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.

Summary

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.

About the author 

Paddy-Joe Moran

Paddy-Joe Moran is a nineteen year old author of two books and blog writer with Aspergers from the U.K.
Blog. http://askpergers.wordpress.com/
Facebook. https://www.facebook.com/ASKPERGERS?ref=hl
Twitter: https://twitter.com/ASKPERGERS
Books. http://www.jkp.com/catalogue/author/1762

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