Not again, I thought to myself.
Did they just really ask me this? Here I go again, I said to myself with a plastered smile on my face, trying to hide how cranky their comments made me. I know exactly why they ask such questions or say the kind of comments that they do. It’s simply because they can’t understand my child’s behavior and why we do the things that we do.
Being an advocate can be very monotonous. At times, I feel like I explain the same things repeatedly. And even after I go into great detail, I get the same baffled looks. It leaves me exhausted, irritated, stressed and angry. It’s exhausting having to repeatedly explain your child to people. I often leave a situation all calm and collected, and then release my built-up frustrations later. After all, a person can only explain something so many times without getting a little grumpy.
Are you wondering what I get asked about my son’s behaviors? My list is somewhat lengthy, but here are the top three things that I am tired of explaining.
1. Every child with autism is different.
There is not one family who has the same journey. So, please stop making comparisons among children with autism. I often find myself in a conversation and the person will say something like, “Well, I knew a woman who had a nephew with autism and he just started talking when he was four. So, your son will too.” Or something like, “A kid who has autism and lives across the street from me was put on a special diet by his parents and now he is just fine. I bet if you try that, Trenton will be too.”
UGH! Nothing can be more frustrating than trying to explain to people that what works for one child/adult with autism will not necessarily work for everyone. When I explain that I tried what they just mentioned and it didn’t help my son, I get the most confused/blank look back.
“How can that be?”
“It’s just autism,” I say, and I leave it at that.
Inside, I am screaming and angry and feel judged. I often feel like they don’t believe me when I say that I have tried and done almost everything, but my son isn’t like the person they know. It’s autism, folks! No one is the same and not one story is the same!
2. Yes, he does look ‘normal.’ Looks aren’t everything.
I know, I know! I hear this one a lot. My child is handsome and adorable, and has the cutest smile in the world. Therefore, he looks “normal” to strangers—it appears that there is absolutely nothing different about him. However, don’t let his looks dictate to you whether he has challenges.
He has many mountains to climb daily, and always will. My life has been forever changed because of his challenges. He may look like the boy next door, but we definitely walk to the beat of our own drum in this house, and we always will.
3. He’s got sensory issues.
Trying to explain the sensory problems that accompany my son’s autism is one of the hardest things to do. “Oh, your son can’t brush his teeth? But, why?” People look at me, expressionless, trying to grasp how a child who looks “normal” can’t brush his teeth because of sensory problems. I always go further, too, explaining that nail trimming and haircuts are impossible unless my son is asleep or held down. The look on their faces when they hear that is priceless!
It is hard to manage not only these types of conversations about autism, but many others as well. I do my best to get through them pleasantly while I am dying a little on the inside. Just when I think that I won’t have to engage in another tedious conversation explaining my son to someone, I find myself right back in the same exact conversation, but with a different person. It’s exhausting.