Thursday, April 22, 2010

Bridging the Gulf

“It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences.” Audre Lorde

The autism community is divided and angry.  One major division is between those who want to cure their child and those who support neurodiversity, those who believe there is nothing to cure.  There is a gulf between those who believe vaccines trigger autism in a genetically susceptible child and those who don’t. 

A friend, who has adopted two children, told me that a social worker prior to the adoption told her, “Through the years, you will bond with your child, love your child, and help her to grow and mature. Along that journey, you will encounter times that your daughter has challenges both big and small, and you will try to help her to ease the pain. When you see that she has a hole or a void in her life, your natural instinct will be to help her to fill it or learn to deal with it if ‘filling’ isn't possible. The desire to find one's birth family is often an aching void, and you will you likely will transition from the vulnerability that you predict you will feel, to finding yourself wanting to scour the planet helping your daughter to find her birth family."

Both groups see the challenges our children face and the voids or holes in their understanding and abilities. But we disagree about how to best fill them.  And that disagreement is often stridently voiced as if there is only one correct way to proceed and believe.

Over the past year I’ve started to occasionally read some neurodiversity and “science based” blogs.  Much of what I’ve read is self-congratulatory, my side is right and only an idiot could think differently posts – though usually put much harsher than that.  To be accurate, the recovery side is filled with a fair amount of vitriol as well.

I read in those blogs that I am stupid, that I’m desperate.  I read that if I use bio-medical approaches to cure my son that I don’t accept or value him and I am deeply and morally offended at that supposition. 

And they read in our blogs that they are lazy, that they are selfish, and that because we fight harder we love our children more and they are deeply and morally offended at our suppositions.

This leaves the autism community offended, divided and fighting . . . but against each other rather than fighting for our children.  I’m so tired of the dismissive language.  I feel as if I’m in the middle of a vicious cycle where one side calls the other desperate and delusional and the other responds in kind.  No group can honestly claim to stand on the high moral ground in this fight and it’s laughable when they try.

Individuals with autism have benefited from both groups.  Regardless of one’s position on vaccines being a trigger for autism, no one should argue against greater attention being directed towards studying the safety of vaccines.  And for many individuals biomedical approaches have alleviated painful symptoms and have led to a greater ability to interact with society.   Regardless of one’s position on neurodiversity, we all want greater societal acceptance and inclusion of individuals with disabilities.  And there are insights we can gain from listening to individuals with ASD even if we disagree with their position on neurodiversity.

Many proponents of neurodiversity support therapy and intervention for their children some do not.  But to brush them all with the same brush is the equivalent of their claim that we are all anti-vaccine when many of us clearly state that we are pro-safe vaccines and support vaccinating children on a limited schedule.  And to state the obvious -- anyone who believes that vaccines triggered autism in their child saw enough value in them to vaccinate.  

Some people with Aspergers support neurodiversity and we should listen to them and learn from them.  But they must accept that they cannot speak for our severely autistic children.  Their voices should not dominate the discussion because our children do not have one.

There have been huge gains in autism awareness and research studying it during the past few years; unfortunately, due in a large part to the ever increasing numbers of kids diagnosed with it.  But part of it is due to the advocacy of many individuals.  Can you imagine what the autism community could do if we redirected the energy we spend fighting with each other towards working together?  There is common ground.  We all want greater societal acceptance and inclusion.  We want accommodations in the workplace for both higher and lower functioning individuals.  And we all want to find more effective ways to teach our children. 

The hostility that has dominated our interactions has come at a high cost.  And the cost is borne by our children.  Both sides continue to harden their positions using increasingly bitter and divisive language and the gap widens.  Reasonable, intelligent and educated people can hold different opinions -- especially in science. 
 
Those who assert that SCIENCE has definitively answered the question “Do vaccines trigger autism” in the negative are dogmatic and no doubt the harshness with which they skewer us contributes to our unwillingness to trust or listen to them.  And in doing so, not only do they ignore the history of science but they also betray what I consider the best part of neurodiversity, the call for respect of differences.  I cannot believe that neurological wiring should be the only difference to be tolerated.  The respect and tolerance they call for should be accompanied by a tolerance for differences in opinion.  

Many of the blogs on both sides of the debate seem to be shrill, self-important mouthpieces for rigidly held beliefs.  Followers chime in and if anyone dares to disagree, the followers pounce with outrage.  Then they follow up with self-righteous diatribes on their own blog.  With embarrassment I admit that I am guilty of that myself. 
 
We must end the war within our community.  But to end it someone must go first.  I do not suggest that we abandon our beliefs or our attempts to recover our children.  But this war has diverted voices.  Rather than speaking for the community we are arguing with each other.  We should disengage from the dogmatic and thoughtless blogs. Let’s call for the tolerance they want extended to individuals with neurodiverse wiring to be extended to those with different positions than their own.  Let’s continue to comment on-line and in the media our position but let’s do it differently.

When we meet vitriol with vitriol and disrespect with disrespect we dilute our power to advocate for our children.  And this time I say it to us -- reasonable, intelligent and educated people can hold different opinions -- especially in science.  We must start at this point and move beyond our differences for the greater good of all our children because there are holes in our children that we are not filling.

1 comment:

Zhu Que said...

Like the perspective, ma'am.

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