Please Don’t Downplay My Pain
The Grief Cycle Stages of an Autism Diagnosis and Beyond
Anger and Frustration
Science currently provides no true definitive answer to why autism affects one person and not another. This makes acceptance and finding peace with an unexpected and different life so much harder. I remember going through this phase for a short time. The few weeks following Richie’s diagnosis, I couldn’t talk objectively to anyone about him having autism. I was angry with anything anyone had to say. If someone said they suspected he had autism, my reply was, “Then why didn’t you say something?” If someone said they didn’t think the diagnosis was correct, I would retort, “Oh so now you’re the expert?” I wasn’t angry with them. And I’m so grateful they understood that my anger had nothing to do with them! I sometimes still find myself in this phase, although not often. It's usually during the real tough times when I feel defeated by challenging behavior, let down by the system, or just physically and mentally exhausted. It never lasts long and it is infrequent, but I would be lying if I said I haven't experienced it since Richie's diagnosis.
From time to time, I do ask myself if I’m doing all I can for Richie. I have wondered over the years how many times my son was punished for exhibiting behaviors he could not help. How many times did he feel excluded, mistreated or unwanted? How many times was he unable to communicate a basic need? For me, this phase is one of the worst ones of all and it still haunts me often.
Sadness and Depression
It’s important for us to be in tune with our bodies (mental, emotional and physical health). My husband can always tell when I’m not quite myself, one of my “tells” is my body’s need for sleep. I try to snap myself out of it with exercise, sharing my pain with my husband and my best friend and writing. It's important to admit when you need support from people outside your family. Support groups, therapists, and family counseling are all great options that will help with healing.
I hope that when you meet a parent of a son or daughter with autism, that you please have patience with them. You will never know what phase of the cycle they’re in. The puzzling truth is that as parents, we don’t know what phase we’ll be in next either. There are moments when I forget that my son has autism. Then I see him play alongside kids his age and I’m reminded of his differences. Since Richie was four-years-old (and every other year since then) I tried to get him involved in sports, but he wanted nothing to do with it at the time. We go to his brother’s games all the time and I wish we would be going to one of Richie’s games to cheer him on. I think to myself, maybe one day.
Just recently it dawned on me that my son is almost sixteen-years-old and he won’t be bugging me to drive my car or asking me to buy him a new one! He won’t be trying to sneak some pretty girl into his room or lie to me about where he and his buddies were hanging out. It’s things like these that cross my mind once in a while, but it’s a silent sadness that only other special needs parents can understand.
Joy and Happiness
We celebrate the goals our kids meet. I reward Richie with each IEP goal he meets successfully. What about the surprises we didn't expect? Richie is learning language, slowly but surely. Our family is amazed by each new word and request he makes appropriately. The smiles, the silly faces, and a trillion other things that happen from time to time. These are moments of joy and true happiness.