This blog (The Autism Wars), and all the other blogs and projects associated with it, are for my autistic son, Mustafa. But this blog is actually not talking about him without him or about daily life with him with some rare exceptions for times when his daily displays of empathy, kindness, and love towards me move me to write. When I say it is for my son, I mean it is part of my activism and my exploration of what it means to try and ally myself to his cause. This cause is something that too many of us are aware of subliminally but consciously do not wish to confront. His cause is the ongoing battle for his civil rights, because he and his peers are marginalized from the moment of their diagnoses and that ableism continues throughout their lives. This is society’s fault NOT the fault of their neurologies.
So my primary job is to use my position as his parent to highlight these injustices and work to end them. This blog is also a kind of serial love letter to my son, as well as a declaration of support for him. It’s testament to what I believe about him and his neurotribe that will exist for him to have long after I’m gone. The blog exists to tell him in my own voice that I have faith in him, and he not only deserves the best life can offer, he has the right to it and should not give up on having it. It is a written form of respect, love, and acceptance for my son.
If the language in the content is ableist and offensive to his neurology I will change it. If something I’ve written is not clear I’ve no qualms with deleting it or modifying it. My evolution from a miseducated parent steeped in ableism to a parent understanding how to stand by him and help him self-advocate means nothing. This is not a biographical journey of me, or my growth as a parent. This is a body of work for him.
My intent is to stand by my son and his neurodivergent peers and work with them to improve my son’s quality of life by helping improving the quality of the lives of everyone in the Autism community.
We parents are continually taught to advocate for our own children and ignore others. We have fallen to warring over labels and causation in order to fight for what small benefits might be given to our children. This warring will defeat us, and all of our community continues to suffer as a result. This is why I also blog in the hopes of helping to change the underlying climate of adversarial behavior that defeats the joint purpose of all stakeholders in this community. I blog to attempt to help us understand what a strong advocacy block we are and in the hopes that blogging will be one of the many community actions that facilitate a truce that lets us work together toward a better future for all stakeholders in the autism conversation. That can only happen if we understand our role as parents and allies of our autistic kin.
So in blogging I try to point out the need to strive for the autonomy and self-advocacy of our autistic loved ones.
Autonomy means presuming the competence of our divergent children while acknowledging their disability and providing supports and accommodations (not limited to assistive technology, but including things like supported decision making, community living, and exploring alternatives to guardianship). It means preparing them for life on their own as much as we can, rather than assuming that because they can’t speak, or because their divergence is apparent, they can’t think or act without us. Once we have made that mental shift as parents, the natural step that follows this is to find adults like our children and learn how they achieve autonomy and listen to their stories of what went right and wrong in their lives. This listening and partnership with autistic disability rights advocates will create an inclusive roadmap of what our children will need us to help them fight for and truly make their lives better.
We cannot continually wring our hands and curse our fate and denigrate our children in the process. We need to understand that whatever caused our children’s divergence is not the point. The point is that no matter what the neurological differences of our children may be, they are fine, whole human beings as they are. What needs to change is the design of the things we build for our communities, all those physical, emotional, and intellectual structures, to accommodate and include them. That is what accessibility means. It is action that declares that our children will be respected and included throughout their lives, and they deserve the same American dream that any child does. It is our job to help them achieve that.
This can only happen if autistic voices are heard and allowed in the policy making of their own lives. WE DO NOT SPEAK FOR THEM. ONLY PEOPLE LIKE OUR CHILDREN CAN ATTEMPT TO CLAIM THAT. If our children can’t speak, it is our job and their right to help them successfully communicate through other means. Remember our goal. Our goal is their autonomy. They have a right to grow up, leave our home if they wish to, and live an adult, autonomous life long after our lives have ended.
So when I get calls, offers to speak and write or do anything public related to autism, I first check to see if anyone autistic has been contacted first. Yes, I actually do that. If Oprah called tomorrow I would do that. Then, I mentally step back and review the above principles and remember the Autism Wars are about my son. This keeps me humble about why I blog and hungry for a world that allows him equal representation and a public place in an inclusive society.
Kerima Çevik is a legislative advocate and a parent activist for autism and social justice. She is an independent researcher who speaks at autism and disability rights conferences and workshops. She is currently promoting the concept of Pay it Forward activism and autism community building through resource generation, crowd funding of crisis mitigation, and leveraging social media. She blogs about autism, disability rights, and life with her nonspeaking autistic son at The Autism Wars , intersectionality at Intersected , social justice at Brave and is the founder of the Amplify Autistic Voices project .