Does the Search for a Cure from Autism decrease Societal Acceptance of Autism?

A comment left on my post The Great Divide: Trying to figure out the Neurodiversity Movement convinced me to write about controversy between acceptance and cure.

The comment: “For me, the essential problem with the "cure" movement is that, too often, the search for a cure eclipses the acceptance of the autistic as he/she is NOW, and hampers our collective efforts to increase acceptance and respect for individuals with autism and other neurological differences. Again, I'm talking about the "cure movement" in general, not necessarily individuals who support it. I don't have a problem with most individuals who pursue a cure, provided they don't persist in using unproven therapies that are potentially harmful. I do object to groups that use pejorative language to promote the cure ideal, and with the (small, I hope) group of parents who put their kids through hell to find that elusive cure--that tells me it's more about the parent and his/her expectations than about the child's well-being.”

With some parents it’s all about themselves regardless of whether the child is typical or not.  But I suspect you’d put me in that category too because I have used controversial bio-medical therapies.

Does focusing on a cure for autism eclipse acceptance for autism and hamper societal acceptance?

The unthoughtful answer is an immediate yes.  If one truly accepted their child’s disabilities there is no need to cure them.  Naturally, nothing is that simple.  One can love and generally accept a person while trying to change attributes, behaviors and so forth.  Parents should ask their children for better grades if they are capable of more, or to change behavior such as laziness, etc.  Does anyone accept everything about another person and is complete acceptance necessary for a loving, fulfilling and a mutually beneficial relationship?  Most people, rather than accepting everything about another, overlook some characteristics or behaviors.

There is an element of what one could call “unacceptance” in the cure movement.  It is a belief that autism can with therapy or treatment be cured, or its’ symptoms can be alleviated.  I believe that many parents feel an obligation to try to do so.

Part of where one stands in this dispute is decided by whether the parent believes autism is purely genetic or triggered by an environmental toxin, often a vaccine.  If one believes that their child’s autism was triggered by the environment should not their primary focus be on ameliorating the symptoms and curing the child?

I shall use the loaded, yet apt, metaphor of vaccines.  Prior to the acceptance of vaccines as preventative medicine, their use was controversial and regarded as dangerous.  Bio-medical treatments for autism are in the same stage vaccines started at – regarded as controversial and dangerous.  But there is reason to believe that many of the treatments could eventually become as prevalent as vaccine use.  Applied Behavior Analysis, now regarded by many as the Gold Star treatment for autism, was initially regarded as abusive, controversial, and dangerous.

Is acceptance of an autistic individual as they are now worthier or nobler than not accepting their present state?  I could argue that it’s nobler to search for a cure.  Acceptance doesn’t often lead to new discoveries or to as great accomplishments.  But in regards to autism it’s just preference or opinion.  Some children respond to bio-medical interventions and others don’t.  If the child doesn’t respond, that time and money would have been better spent on other interventions.  If the child responds, he makes larger gains than he would have with conventional interventions.

So, in regards to whether acceptance of or trying to cure autism is better, I will definitively say that it’s a matter of opinion.

Collective Efforts:

Do I as a parent of a child with autism have an obligation to society as a whole beyond my obligation to my disabled child?  Yes, I believe I do.  Both my family and my sons have benefited from those who came before us and we have the same obligation to those who come after us.  Does my search for a cure hinder those who will come after us?  And if so, does that obligation override my obligation to my children’s well-being?  I do not believe that in this case my obligation to future generations of autistic people overrides my obligations to my children.  Thus the only question to be answered is does my attempts to cure William of autism hamper “collective efforts to increase acceptance and respect for individuals with autism and other neurological differences?”

What message am I sending to society by trying to cure autism?  Clearly I’m sending a message that I believe it is less desirable to be autistic than typical.  But I would never send a message that William isn’t wonderful or that we regret him in any way.  William, in many ways, is the center of our family.  He is worth any sacrifice we have made for him.  Naturally, I wish he was typical for his sake, for my other children’s sake, for my husband’s sake and for my sake.  It doesn’t necessarily follow that my desire for him to recover is more about me than him.  I believe I’m speaking for most bio-medical parents when I say the realization that my life would be easier and less worrisome if he recovered or functioned at a higher level doesn’t make my attempts to cure him more about me than him.

Does admitting that I believe it is desirable to cure autism confuse the message of acceptance?

I think that people understand that parents want the best for their children.  My friend taught people in our church to sign so they could communicate with her son.  I know that she wished that he wasn’t deaf.  My aunt worries about the future of my cousin with Down’s syndrome.  Working to lessen or eliminate disabilities for individuals doesn’t damage that community’s message –their demands for accommodations and respect.