I will start this post with a disclaimer. I am not autistic and I am not gay. I speak here, as I always do, as a parent and a reasonably intelligent and compassionate human being.
This month is Autism Awareness Month (or as many are hoping to move toward, Autism Acceptance Month). As part of that, I read this very well done piece called The Awareness I Want to See, written by an autistic person. The main idea is that while there may be a mourning period for parents after their child is diagnosed with autism, and that it is perhaps a reasonable path to acceptance, wouldn't it be better if parents didn't have to mourn? Wouldn't it be better if that diagnosis didn't "sound like a death sentence or painful disease?"
The author compares the parental experience of having a child diagnosed to the experience of learning a child is gay - particularly during a time when homosexuality was more stigmatizing than it may be today. And in so many ways, this is a good analogy. A parent, even now, might go through a period of grief at their child not being who they expected them to be. A father might be worried that things will be more difficult for his son - that he might be bullied or that his intelligence won't be noticed because he seems different. A mother might worry that her daughter will never marry or give her grandchildren. Their vision of a future is changed.
There was even a time when homosexuality was in the DSM (Diagnostic and Statistical Manual of Mental Disorders). Being gay was seen as a mental disorder. An updated version of the same manual is used to diagnose autism today.
Thinking about autism in this way paves the way for autism advocacy to take more of a PFLAG (Parents, Families and Friends of Lesbians and Gays) model. This model allows autistic people to lead the conversation, advocating for themselves with allies and supporters following their lead.
Unfortunately, this is an imperfect analogy, primarily because homosexuality is not a disability.
While this analogy does illustrate that feelings of grief and loss do come, in large part, from social construct, it also implies that we can eliminate these feelings with little more than a change in attitude. This is not the case. My son is disabled. His challenges are numerous and varied, and no amount of attitude shift or even reasonable accommodation, will make him a safe, independent, child (at least as much as any other six year old).
This analogy also implies that no real loss occurs. Yes, a parent may see having a gay child as being a loss. There may have been a time (and sadly, in parts of this country and the world, this is still true) when coming out as gay meant an end to career and social life. We are still fighting for basic rights like the right to get married. But these losses are social constructs. There is no reason, other than humanly created norms, for someone who is gay to be unable to marry, have a job, or carry on a safe, independent existence.
I love Moe and am grateful for his health and happiness. But his disability has caused real loss. We cannot, for example, reasonably travel with him. And while it is difficult to see friends' vacation photos on Facebook, I'm not just jealous because we can't ski Tahoe this year. Not being able to travel means that we do not get to see family and friends that live in other parts of the country. Since my brother died, my cousins are the closest family of my generation. I miss them. They are also family members who could reasonably be guardians for Moe and Jelly if anything happened to us, except they don't know Moe and Jelly.
I have lost close friendships, because since Moe was two years old, my schedule has been centered around his needs. I have lost career opportunities because I have had to stay out of work longer than I expected. I have lost the opportunity to be more involved in Jelly's preschool years. I am not complaining; it is my job as a parent to make whatever sacrifices are necessary to give my children what they need. But there have been real and significant losses.
I still find value in the analogy. The Autism Self-Advocacy Network says "nothing about us without us," and I think this is important to remember. Moe is not able to participate yet in making decisions about his care or education, but I do my best to inform him of what we're doing and to listen to his cues as to what is or isn't working. I try to presume competence and understanding and make it our primary goal to give him tools to communicate. Perhaps someday he will be able to advocate for himself, and when he is able to, I will hand over the reins with pride.
For now, I try to be thankful for what I have. I make new dreams and accommodate my life to fit Moe's. But I will not deny that our family has lost deeply and I grieve that loss. And I will likely continue to do so for a very long time.