Tuesday, March 30, 2010

The Future Of Autism: Cures or Neurodiversity Accommodation?

The New York Times ran an article on the stalled nomination of Ari Ne'eman, a young man with Aspergers, to the National Council on Disability.  Mr. Ne'eman is waiting for Senate confirmation, and would be the first person ever to join the National Council on Disability with Autism.  But he is finding some critics that don't want him on the council because of his position that neurodiversity should be the goal, and not cures for autism. 


This brings up a very interesting discussion on what the future of Autism research should be:  cure or accommodation?  If you ask a parent with an Autistic child, you will get an answer as different as the child is from others with autism.  That's because Autism is a spectrum of disorders, and not a single disability.  Because it's a spectrum, there are a number of different ways it can show, ranging from low functioning autism (cognitive issues, low development, etc.) to high functioning autism (brilliance, but inability to socialize because of missing cues). 


Those with high functioning autism can generally take care of themselves, though they grow up bullied and end up being ostracized from society.  Generally they will become brilliant scientists, professors, computer programmers, artists, etc. that do well when working in their field, but shun the lime light and attention from others.  These are those who want to see neurodiversity being taken seriously, and have their differences be accepted instead of being targeted by society.  Mr. Ne'eman falls under this category, and I have to admit I have in the past wanted this very same thing.  After all, my older brother was constantly bullied in school because he was seen as an easy target based on his autism.  I fear for my son as well, as he is also very high functioning. 


But there are others out there who have no immediate hope for being able to take care of themselves on their own.  They tend to be self destructive, go through seizures, are completely non-verbal, and also tend to test low in their IQ evaluations (if they can even be tested).  They are unable to function without assistance, and therefore no amount of neurodiversity acceptance will help them beyond their parents homes or a nursing home once their parents are no longer able to assist them.  I don't have a child at this level, so I hesitate to suggest that they as parents would like to see their children cured, but I would venture to guess that many would like to see a cure for their children. 


So which is right?  Well, I think it should be pretty obvious that both positions are right and therefore have the right to be heard.  I think that neurodiversity for high functioning individuals should be practiced, and those who are eccentric should be embraced within society.  But I still think that a "cure", or a way to manage the severe effects of autism needs to be researched.  Addressing both sides of the issue is very possible, and does not require a whole lot of money vs. addressing just one side of the coin.  Sure, medical research is very expensive (and you thought your Insurance Company got all the money?), but social change shouldn't be.  That comes from what we teach our children. 


Perhaps one day neurodiversity will no longer be an issue, because it will be practiced by everyone.  And hopefully one day a method will be developed to help manage severe autism for those who so desire it.  Being able to address both sides of the coin is one of the brilliant advantages of having an open, democratic society without the burdensome requirements of micro-managed regulation.


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