On Parent Activism And the Autism Wars

"A Chinese bamboo book, open to display the binding and contents. This copy of The Art of War (on the cover, "孫子兵法") by Sun Tzu is part of a collection at the University of California, Riverside. The cover also reads "乾隆御書", meaning it was either commissioned or transcribed by the Qianlong Emperor."  Wikipedia photo credit vlasta2, bluefootedbooby on flickr.com - http://flickr.com/photos/bluefootedbooby/370458424/

Victorious warriors win first and then go to war, while defeated warriors go to war first and then seek to win. 

Sun Tzu, The Art Of War

Happy New Year.

It took a long while for me to decide what to post first this year. So many topics matter and so much is happening simultaneously.  I thought I might start off 2016 discussing an aspect of the journey involved with the idea of working to be an ally to autistic people and what that should mean.

What happens to some of us who are parent advocates is a kind of euphoria at being thought of by activists as an ally. And that can lead to a grave mistake in thinking. Because many parent allies view themselves as mediators in the autism wars between the medical model community parents and professionals, autism parents in general, and autistic adults, pro-disability rights and human rights stakeholders and activists. By definition, allies are not self-appointed and this understanding expands to include self-designations as bridges between parents and autistic adults in our community. Such bridges or potential mediators already exist. If we are to be parent allies, we should understand that those roles are not ours.

Autism is unique because, in previous generations, it has gone undiagnosed or misdiagnosed for the lifetimes of many people. This is particularly true for autistic women. And while this is not true for my son and his peers, for many autistics autism expresses as an invisible disability. So what exists in our community are a very large population of parents who discover when their children are diagnosed that they are also autistic. We also have quite capable autistic parents diagnosed as children who marry and have children. Those autistic parents are the mediators and bridges in our community. They are in fact the only population of stakeholders in our community who completely understand what it means to be autistic and what it means to parent autistic children.

Meaning that no matter how beloved an ally a parent is unless that parent is both autistic and a parent they are not equipped to bridge the gaps between groups of stakeholders in the autism community. Period. While a parent may also express neurodivergence, it does not necessarily make them autistic. So while their voices are invaluable and necessary to the autism conversation, autistic parents are the group that sits firmly on both sides of the autism wars for personhood, inclusion, accommodation, and representation.

The role of those of us who are parents who do not carry the autism label is to reach out to autistic parents, amplify their voices, and ask how we can assist them in their roles as the voices in two stakeholder roles. In doing so, we must understand that our voices have privilege, and amplification of marginalized voices does not diminish our say or sway in the community.