When Mr. L was diagnosed with autism I knew from the beginning that I had no reason to hide it from him. It was a part of him and I love all the parts of him, not just the cuddly, funny, and polite sides. I may not enjoy every part of my kids, like today when Little Miss A decided to systematically break my crayons. I have a special place in my heart for Crayola crayons… Anyway, I digress. I don’t enjoy all the things my kids do, but I love everything about them.
I knew when I found out he had autism that I did not want to have an awkward talk with him down the road that started with him asking, “Why am I different?”. I wanted it to always be known, enjoyed, celebrated, and faced with honesty. I never wanted him to feel lied to or betrayed.
I’ve always just assumed by speaking out about it, and being straight forward that this neurological brain disorder, this disability that effects his communication and social interactions would just naturally be a part of him. Obviously our family is sensitive to Mr. L’s feelings and are careful about how we talk about autism. Making sure the positives about it, like his ability to focus on fine details, and the way it makes his art so specific and unique are praised and cheered. While the parts that make life more difficult like his lower level of stimulus capacity is talked about more carefully and specific, to make sure there are clear understandings that we still love and support him.
I thought autism would just be another adjective or noun that Mr. L would use to described himself. Like how I see myself as a female, mother, wife, woman, follower of Christ, writer, or silly. But I’m starting to wonder if maybe he won’t use it as part of his self narrative, or if he eventually will but to do so and for me to avoid that future conversation, I might need to be less passive and more direct?
This is one of those many things that as a mother I worry which way is the better route and which will cause my son less emotional harm? Temple Grandin reiterates time and time again the importance of pushing and stretching those with autism just slightly past what is comfortable to help them learn and grow. Grandin being on the spectrum herself is a huge advocate for others with autism and firmly believes that in order for people to have fulfilling lives, they need to work as hard as they can to achieve reasonable goals, which for many should include having a job, living on their own, and for many being able to drive.
I agree that for us personally I hope that part of Mr. L’s “fulfilled life” will include being around those he likes to keep company with, and to have a job. I personally like to reach a little further with the hopes that he can live on his own if that is what he wants to do, to be able to drive, and to find a companion.
So going back to what his self identification might look like, how do I include autism as part of his list? I mean I don’t want to force it on him, if he never wants to speak out loud about it, that’s fine with me. To each their own. But at the same time his social interactions are not neurotypical and people respond accordingly. I do think if he hasn’t fully picked up on this yet, he eventually will and he should know why there is this difference in communication.
I worry that I will do it wrong, that I will teach it wrong. I thought by not making a big deal out of it, and just letting it be a part of our natural communication that it would be less stressful. But I’m beginning to wonder if I need to be more direct now, if I want to avoid it being a BIG talk down the road. But what if he does get it, and by being direct just feels like salt in a wound and makes him feel singled out in the one place he should feel most safe- his home.
Why am I asking this today? Because we were given a book from his school social worker that was for his younger siblings. It is a cute book that shows that cute, red, puppet monster, Elmo. In this book Elmo introduces the Autistic Sesame Street character, Julia. My two younger kids really like the book, but the first time I read it, Mr. L came into the room for the last couple of pages and looked at me like I had been talking about him behind his back, full of betrayal.
I assumed it was a misunderstanding because Mr. L really enjoys the autism picture book, “Hugo and Autism” that I wrote. So later that night we read the Elmo book as a family and Mr. L acted uninterested and at the end I asked him if he knew anyone that had autism and he refused to answer. Mr. C who doesn’t catch a whole lot of unspoken communication blurted out that he knew that his big brother has autism. Mr. L didn’t look amused and that is when my husband and I looked at each other with concern.
It’s hard to know for sure why our son with a mental disability acted this way. So to double check that we picked up on a first ever negative response from Mr. L towards the idea of autism, I asked him again tonight when his siblings were in another room if he knew what autism was and he said, “Uh, ask dad ok?” And started to take off, but I quickly asked, “Can you say autism?” and Mr. L jumbled the word out and left.
I’m starting to wonder is that talk, the one where I imagine my husband and I sitting down with our oldest and being strait forward with him in telling him he has autism and explaining what that means, is inevitable? Is it more important than I realized previously? Is it less important than I’m making it out to be?
Does he already know? And if so was it not a big deal for most of his life, but recently has he began to see the differences between him and others show more and he’s tying these negative and frustrating moments to that “A” word that has been floating around and following him like a shadow he hadn’t previously cared to take a closer look at? Are the loose threads starting to come together to look more like a tapestry that he doesn’t want to think about?
I don’t know. He’s only 8, the only teenage hormones that have hit this house are the needs for deodorant and body wash. The toddler is coming into her threenager tantrums pretty strong, but I know that is nothing in comparison for the days of Jr. high and High school. I just wish I could ask him what he knows, and I wish I knew better how to prepare him for life. Life is already hard without having any disabilities, then add in the invisible ones that people can’t seem to understand because your not in a wheelchair or arm sling, and it can be just mean.
Do you know anyone with autism? Did they always just know, or were they told later in life? Feel free to share in the comments below.