Asperger's Diary

Life through the lens of Asperger's Syndrome.

Getting To The Root Of It

What is meant when we say we want a cure?
John Elder Robison
This post is a response to Why can't we all get along? by John Elder Robison

Since I began my Asperger's journey several years ago, I have read just about anything I can get my hands on regarding autism and Asperger's, in an attempt to understand the community and my place in it.  In the process, I've seen a lot of troubling negativity, on both sides.  Like PT blogger John Elder Robison, many times I have wondered, "Why Can't We All Get Along?".  One of the comments on his excellent post particularly resonated with me, and brought up a point that has surfaced in my mind from time to time...  When we talk of a cure for autism, what are we talking about?  And, are we all defining it the same way?   From what I have read, I suspect not.

Personally, I've given a lot of thought to the question of a cure...  If I could wave a magic wand, and be "normal" - would I want to be?  Some days, yes, some days no.   I do see compensating ability in how I am, and it's all I've ever known.   Do I watch groups of friends, easily and comfortably conversing in a crowded restaurant, and feel lonely? Sometimes. Maybe a bit jealous?  Yes.  

Inherently, I tend to believe that my condition is a bit of a trade off...that I have had to give up some of the things I miss in order to have the things that I do well.  Perhaps that's just compensating, or rationalizing - I don't know.   If there was some cure that would take away my disabilities, while leaving what I consider the "benefits" of my Asperger's intact - would I take it?  Probably.  

The commenter on John's blog wrote:
"Being autistic does not make one immune to unrelated negative environments, gender and age related issues and other disabilities that can muddy the waters of what exactly we wish we could 'cure' .

Most of my life I wanted a cure so badly, that I thought death was the only answer to 'what ailed' me . 15 years before receiving an AS DX, I decided what ailed me most was trying to be like everyone else so I stopped trying to socialize and let myself enjoy my 'interests' free from guilt. Even without a name, I knew that if I kept trying to make myself 'act' like everyone else (now known as NT), that it would kill me.

I don't want a cure to learn to socialize or to learn to enjoy American Idol . I want a cure for ADD or Executive dysfunction, dyslexia, auditory processing, IBS, insomnia and other very common co-morbids which though not directly a part of the DX , have made my functioning much more challenging then the obsessions and NVLD ever have . Aspergers just makes me 'weird' it's the other stuff that makes me disabled."

Some time ago, I watched a documentary called "Behind the Glass Door: Hannah's Story."  Watching it, it was clear that the family's and filmmaker's viewpoint was focused on a cure.  Marketed, in part, as a religious movie (although I didn't realize that when I picked it up),  I was surprised that it also went down a road that many neurodiversity advocates find egregious.  In it, the mother of the profiled child openly discussed her moments of despair in which she struggled not to kill her daughter.  Somewhat shocking fare for a Christian film.  

Watching it, though, I began to notice something.  What the parents, and professionals in the film called a cure, was not what I called a cure.  What they called a "cured" child, was a child that had, through treatments and other interventions, had improved enough that they could function in the world.  I cannot argue with that.  After all, someone (many someones) did that for me, or I wouldn't be where I am today.  

When I read the blogs of some who oppose neurodiversity - comments I read seem to indicate that the belief is that no cure means no assistance, no training, no treatment.  That neurodiversity means that children who can't talk, smear feces and face institutionalization should be cut adrift.  I may be totally missing it, but I just don't think that that is what advocates of neurodiversity are saying.  When I read about neurodiversity, two major issues seem to be at the crux...acceptance, understanding, and tolerance of autistic people; and the intrinsic value of autistic people as a member of society, regardless of the level of functioning. 

Can those two things coexist with pursuing treatments to better an autistic person's life?   I think so. 

When I read the blogs of some who are for neurodiversity - comments I read seem to indicate that the belief is that if you want to cure your child, you don't value them, or their uniqueness.  That you are for eugenics, and simply want to get rid of autistic people altogether.  But, when I read about those who want a cure it seems to come down to the idea that they deplore the suffering of those affected (especially if it is them), that they want the people who now suffer as a result of autism to be able to live a full, functional life. 

Can acceptance and tolerance help a person to get the services or treatments that would allow them to full, functional, life?   I think so, if only to mitigate the stress if you occasionally fall short. 

There are aspects to the arguments made by both sides that appeal to me and some that trouble me.  Some go too far on either side.  And any forays into name calling - trolls, b*tches, etc., cross the line in my book. 

(And, yes, I have seen this on both sides - although extremists on each side seem to believe that the other is the sole promulgator of such vitriol.)

Like the commenter on John's article - I, too, struggled for years with the idea that I needed to "fix what ailed me."   Sometimes the despair was so overwhelming I didn't see any way out.  I wanted a break, a rest from the constant pain and stress, yet none was coming.  For me, the solution to this was to consciously choose to focus on what I had been given, versus what had been taken away.  It was not that there was no suffering or disability, but that I knew that to focus on the pain was suicide.  The negativity would eat me alive - and it wasn't likely to change my situation one iota.

With no cure forthcoming in the near future, I came to realize that the only way for me to get on with my life was to focus on what I have, make the most of it, and cultivate hope. In the end that's what changed my life - and, in a way, was its own cure.

 

Lynne Soraya is the nom de plume for a writer with Asperger's Syndrome.

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