Recently the preaching minister at my church felt the need to talk about asperger’s in his sermon. I wasn’t thrilled with what he had to say about my “disorder”. He called it “crushing”. He only pointed out that we have social struggles… failed to mention the other types of issues we aspies face. Also, he didn’t point out that some of us don’t have debilitating social dysfunction. Many of us can do social stuff pretty well.
I’ve been pondering his words since I heard them. What about all of the people who look to him for guidance and information? Didn’t he do them a disservice by misrepresenting or overgeneralizing MY diagnosis? My SON’S diagnosis. And how many actual aspies (not mom’s of aspies) did he speak to before writing these remarks? I have been torn about whether or not to write him a note. I have wondered if it would just get lost in a sea of other emails from various members of the congregation nit-picking his sermons to death. Should I just let him have this one?
As you may know, my youngest son has been attending a tutorial twice weekly run by a dear friend of mine. He started last year and I’ve been beyond pleased with the program. You know that when I have no complaints, something miraculous is taking place. My friend does a stellar job and I’ve been so thankful to have her be a part of my child’s education.
Unfortunately, he’s been unhappy about attending school. To be fair, he seems unhappy about most aspects of his life, much like other people living in this house. Consistently, he’s begged to not go to school, refused to dress, refused to eat, refused to get out of bed, and refused to talk about what he did while he was there. Today, he put his foot down. As I tried to get him to work on his short Spanish assignment, he threw his pencil across the table.
“I don’t want to go to Spanish class. I don’t want to go to school. I don’t want to go to any school. I don’t like it. I don’t understand. Why can’t I just be homeschooled?”
I can’t in good conscience keep sending my child to a program that he simply doesn’t like. It’s not fair to him. And it certainly hurts me right in the heart to keep doing it. So I can’t. And I won’t.
Needless to say, I was terribly upset to have to tell my friend that we were removing one of her students from her school. Wasn’t worried she’d be mad or upset… just can’t stand the thought of hurting someone I love.
The conversation went smoothly. In my distress, I confessed that I was noticing some autistic traits in my youngest son. She agreed that he is very likely on the spectrum.
And the tears came.
You see, I am told so often that my oldest son and I are not autistic. People tell me that all of the time. And I’ve had doctors and counselors tell me he wasn’t on the spectrum.
“He can look me in the eye.”
“He interacted with me.”
“He talked to me.”
So, when I met with the psychiatrist who finally, FINALLY validated me-who finally said, “Well, I think he’s on the autism spectrum. Asperger’s. Don’t you?”- I lost it. Not because I was sad. Not because I was in despair. I cried because I was validated.
To hear a person I respect who is a professional educator who has spent ample time with my son say that, yes, he is likely on the spectrum… that was very validating. I felt relieved.
But then, an hour or two after the conversation, I started to think. I began pondering how my five year old often dislikes being touched. How he told me every day for months that he hated me. How he still tells me he doesn’t love me. How he likes wearing headphones all of the time. How he isn’t interested in making friends with anyone, ever. How he seems to be lacking emotions with an exception of rage and indifference. How he gets terribly upset when it’s time to glue because he doesn’t like glue. How he is glad he homeschools because he doesn’t want to be around other people… it all started to seem a little more… bleak.
Now, isn’t that funny, coming from the woman who is forever yelling, “I love being an aspie. I wouldn’t change if I could”?
When I think about my son never being able to say he loves me, I feel… crushed.
My older son and I have lots of aspie traits. We struggle to understand social situations. We’re awkward. He walks funny. I talk funny. We both have terrible coping skills. We’re both prone to depression and anxiety. We both get obsessed. But, luckily, we both experience love. We may not be able to express or show our love effectively all of the time but if we love you, you figure it out one way or the other. Maybe it’s the gifts we give you or the compliments we pay you or the way we save our Minecraft papercraft blocks so you can build some. You just know that we love you. So, until now, my first hand experience with aspies (at least with acknowledged aspies) has been with ones who aren’t “afflicted” in the emotions department. At least not severely.
If asperger’s/autism is causing my son to not be able to show me love, to tell me he loves me, to connect with me… then… well… I’m crushed. And I guess that means asperger’s is crushing me.
It’s crushing me so hard right now that I can’t breathe.
But just give me a few days to process through this. I’m sure by the end of the week I’ll be back to my strong, “Yay, go aspies!” regular self. For now, though, I’m going to feel this.