AutisticWhileBlack: Lift Your Family Out Of Autism Mourning Culture

Image of Mu in a red and black t-shirt and black shorts
under a canopy that protects him from
insects without the use of bug repellent, posted with
the permission of the subject. © Kerima Cevik

Mourning is a word that parents, including me, have misused. Being told by a medical doctor that our son would never improve and would eventually be institutionalized caused my entire family to break down in tears of shock. When we got home after an entire day of grueling tests and traumatic news, my husband, daughter, and I hugged Mu and one another and I vowed he wouldn't see the inside of any institution. Then we helped one another buck up and find ways to teach him and enrich his life.

We need to be clear about the language we use to describe milestones like diagnosis day in our children's lives.
I said this elsewhere I am going to repeat it here. I can't tell people how to govern their emotions. My activism is among other things, against parents and carers who abuse and eventually murder their autistic children. The pattern of abuse in every case, and I mean every case, begins with the appropriation and perversion of the process and meaning of mourning.

The Kübler-Ross model of five stages of grief is itself problematic. Yet parent-led autism organizations continue to espouse the appropriation of this model and apply it to parents mourning their children's diagnosis of autism.

Quoting the article "It's Time To Let The Five Stages of Grief Die" on the topic of applying a hypothesis based on anecdotal interviews on how patients handle a terminal illness diagnosis to any or all manner of grief/mourning:

"Despite the lack of evidence to back up the Kübler-Ross stage theory of grief, its original birthplace, On Death and Dying, has been cited 15 509 times on Google Scholar at the time of writing. It has been applied to everything from the grief processes of those diagnosed with diseases like COPD or HIV, to the grief experienced by caregivers of those with dementia; patients who have amputations due to diabetes; doctors who receive low patient satisfaction scores or go through reduced resident work hours; even (and I am not making this up) the grief experienced by consumers after the iPhone 5 was a disappointment."

 And we can add to this the constant presentation of the same expectation of mourning to autism parents. Parents get caught up in a culture of prolonged mourning. They wallow in it. They escalate their own emotional upheaval by seeking out online groups and followers who perpetuate the cycle of this appropriated mourning culture such that said mourning breeds resentment that combined with chronic insomnia end in harm to autistic youth. 

So while I began with being sad at the initial news on a diagnosis day, this perpetual mourning was not a thing I did. My family was given our son's diagnosis in the most brutal and clinical way possible. But our son was right there. He deserved better and we understood that. As Mu got older we realized that the temporary reactive sadness we experienced and overcame wasn't the culture of mourning that some other groups of parents were steeping themselves in. We began efforts to seek out parents who saw their children as they were and accepted them without this constant cycle of mourning based upon inaccurate stages of grief not meant for disability diagnosis at all. Eventually, I came across Jim Sinclair's Don't Mourn For Us. After reading it, I felt that our family was on the right path, and we began to actively stay away from groups of parents who pushed this mourning culture rather than discussing what could be done to support and facilitate better lives for our son and his peers.

Mourning has a meaning that implies catastrophic loss and that, when your child is right in front of you and needs you to be present and supportive rather than grieving and disconnected, is, in my opinion, a reason for a parent to reach out for mental health counseling until they are in a better place and can see their children as they are without mourning the idealization of a child that never existed. Stepping away from this culture of mourning autistic children opens the door to self-healing and true acceptance of disability. We parents should be given a mental health roadmap from diagnosis day onward. Parents need to be certain they have themselves together when this journey begins. Whatever issues we have, individually and, if applicable, as a couple, need sorting before we can help our autistic children. That begins with the culture presented on diagnosis day. There is no room for medical professionals abandoning hope when the potential of an autistic nonspeaking child is not yet measured. Dumping pamphlets on parents and sending them on their way is not the answer either. We are doing diagnosis day the wrong way. We are creating the beginning of this culture of perpetual mourning that fossilizes into resentment and may potentially escalate to violence against autistic children and youth. 

I can't speak for everyone. But when my family made a group decision to step away from the parent mourning culture, we began to see progress with our son that professionals were not getting from him. The most important gift any parent can give to their disabled offspring is the understanding that they are loved, they are capable, they are competent. That can't happen if we insist on mourning what we imagine they might have been if disability were not part of their lives.