Grief as defined by Wikipedia is “a multifaceted response to loss, particularly in response to someone or something that has died to which a bond or affection was formed”. However, it is the grief of “expectations lost” that I am most intrigued by. Specifically, the expectation of giving birth to a “normal” or “typical” baby.
When I learned that my first born was on the autism spectrum, I did not grieve. I was relieved to have an explanation for his differences, luckily an explanation that I had just become personally familiar with. Yes, I felt lucky to share the diagnosis with my son, so that it was our normal. At worst, I was concerned that he would be socially isolated and develop lifelong anxiety and depression like I did but I didn’t wish I had another child instead of him and I certainly didn’t grieve for any unborn child.
Later, when I ventured into social media territory, I became bombarded with ‘gloom and doom’ rhetoric about autism that frankly made me feel like a less worthy person. Each word was a microaggression drilling little holes in me; burden, cure, hate, missing, stolen and grief. These days, it is so common to hear the rhetoric of grief being associated with diagnosis of autism that it becomes expected and I’m not the only one who doesn’t appreciate it.
Something I learned during my adult life when attending couples counselling is to always validate each other’s feelings (when I said “but it’s not logical” about my husband’s feelings, to the psychologist, it got me referred for additional counselling). So I was torn between validating others grief of the unborn child and somehow processing my feelings of unworthiness about their grief that were just as valid.
Then, I remembered a post by a transgender blogger titled ‘Transition is not death‘ and I remembered about the white lesbian couple who gave birth to a black baby and sued the sperm bank (read the last paragraph of this article about it) and I realised that we shared one thing in common. The children were lesser privileged than their parents in each case. The parents grief, although valid, was prejudiced. Do you know many parents who grieved that they gave birth to able-bodied, cisgender, heterosexual white children instead of another ideal?
In his article, ‘Don’t Mourn For Us‘ Autistic Advocate Jim Sinclair says “Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real…but it has nothing to do with autism” and he stresses the importance of grieving “away” from the autistic child.
I would add that part of that process of managing your grief should involve acknowledging the culturally learned aspect of grief whether it comes from ableism, sexuality prejudice, genderism or sexism or even physical attractiveness or intellectual ability etc. Not only should this be acknowledged to yourself (and for your social media audience when you refer to your grief) but also that you should openly challenge those prejudices and help to create cultural change so that one less person is duped into false expectations.
In the words of Jim Sinclair: “The tragedy is not that we’re here, but that your world has no place for us”