I decided to give up gluten at the beginning of this week. I had already given up most foods that have gluten in them, but I hadn’t completely cut it out yet. In the past six months, I have limited my diet to foods with little fat, oil, sugar, acid, lactose, and sodium content. For the most part it has worked, but I haven’t followed the diet strictly until recently.
Going gluten free was a lost battle for me. It meant admitting that something really is wrong and accepting that it may never change. In a few weeks, it may not seem like a big deal. But it is a big deal right now, which has made me realize something.
I never thought of an autism diagnosis as a big deal. It was simply a name for a set of symptoms that already exist. I didn’t understand the need to mourn or the devastation someone may feel. But now I understand better. Parents don’t mourn the child or the diagnosis. They mourn the inability to hold onto something they wanted to have.
Right now, I am mourning that I may never enjoy pizza again, that I don’t remember the last cream filled donut I ate, that I do not know if I will ever again feel the sensory adrenaline of hot sauce. To other people who haven’t experienced this or who have been living with these problems for a while, it may not seem like a big deal. People who don’t know, who can’t know, or who know all too well, are giving me suggestions and advice, solutions for what they perceive to be my problem. But they all miss the point. I don’t need solutions right now. I just need to mourn.
Give me solutions in a week or two. Tell me what I’m doing wrong and what I can be doing better, just wait until I have had a chance to mourn first. Let me breathe in the reality of my situation for a moment. Let me process what this means and what it changes. Let me not be okay for a little bit. Then you can bombard me with your advice and solutions because maybe then I can handle it.
I am sorry for not understanding the need to mourn before. I am sorry for wanting people to realize that autism isn’t so bad before they are ready to. I am sorry for not recognizing your right to mourn.
You have the right to mourn what you wish could be. You have a right to cry and be sad or afraid. You have a right to not be okay for a while.
And maybe when you’re ready, we can discuss advice. Maybe when you have mourned, we can solve this together. Maybe once you have processed this, it won’t seem quite so overwhelming. In the meantime, I understand your need to mourn. And I respect that right. I hope people can understand and respect mine too.