Grief. Merriam-Webster defines it as: deep sadness caused especially by someone’s death, or a cause of deep sadness.
In 1969 Elizabeth Kubler-Ross published On Death and Dying, and in it she described the 5 stages of grief: denial, anger, bargaining, depression, and acceptance. Most of us have experienced grief due to the death of a loved one, and if you reflect on the experience you would likely recognize one or more of those stages.
In the early days of my journey with autism, grief would not have ever been an emotion I would have acknowledged feeling. As I’ve written many times in my blog, I was in “fix it” mode. Charge ahead! However, that train came to a crashing halt when, in the second grade, my son was asked to leave our local public school and placed in a private therapeutic day school. I was so disheartened by this setback I became depressed. Soon thereafter, I began working with a wonderful therapist who, after a few sessions, told me that I was grieving my son! What? See the second definition above – it actually made sense to me.
Why are such simple things so hard for him?
It’s not fair that he has these challenges.
What would his life be like if he didn’t have autism?
These were some of the thoughts I shared with my therapist as I began working through the stages of grief. I started with depression, and since then have bounced erratically between anger, bargaining, and acceptance. I skipped denial. Overachiever? No, because once we got the diagnosis I just knew autism was the explanation to my son’s challenging behaviors and special gifts.
So three months ago, this blog on grieving your child with special needs would have likely gone on for a paragraph or two in which I encouraged you to do the same and reassured you that it’s perfectly normal and likely inevitable. But after reading Neurotribes, I’m seeing my grief through a whole new lens. It’s the lens of an autistic adult named Jim Sinclair.
Sinclair was one of the earliest autistic adult self-advocates. Along with two others, he launched the first autistic run organization in history, the ANI (Autism Network International). In 1993, Sinclair spoke at the first International Autism conference in Toronto. His talk entitled “Don’t Mourn for Us,” as summarized in Silberman’s book, brought me to tears. In it, he set out to dispel some long-standing myths such as Lovaas’s notion that there was a normal child trapped within the “autistic shell” waiting to be rescued. He acknowledged that some amount of grief was natural but that letting it go on can send a dangerous message to the child.
“This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure….that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”
NO! No, no, no, no, no. That is not AT ALL the message I want my son to hear. That is not the message I would want any autistic person to hear. Never. So if asked, how can I explain my grief to my son? Since reading Neurotribes, I’ve thought a lot about this question. There is no doubt that I have felt “deep sadness” over the years, and although it was not caused by someone’s death, perhaps I could explain that it was caused by something’s death. That something was just an idea, a vision, the dream of a child. Sinclair put it perfectly,
“Grieve if you must, for your own lost dreams. But don’t mourn for us….We are real. And we’re here waiting for you.”
So I will do my best to follow Sinclair’s advice and not dwell too long in my periods of grief. I will remember that my grief is not about who my son is but rather the challenges he faces. I will try to take his perspective (should come naturally to an NT, no?) and understand how hurtful this concept of grief could be to an autistic person. I will try to fully embrace Kubler-Ross’ final stage – acceptance.
by Maryanne Nugent, Autism Community Consultant & “Mom of” a son with autism