It’s 7:42 on a Friday evening. I have just voiced a warning about bedtime approaching to my toddler daughter. I’m lounging in my room, looking through social media. A moment later, my teenage daughter, K, enters and asks, “Snuggle?”
I pat the pillow next to me. She squeals and lays down, immediately touching her forehead to mine. She talks about things that make her happy: An upcoming camping trip, a sack lunch for the next day that I’ve packed with her favorite things, and what color she might next like her nails painted.
K is autistic. I am too. She is a seeker of closeness and I’m usually averse to a lot of touch, so she asks, “Can I touch your ear? Can I touch your hair?” before doing either. It’s a good day, so I say yes and she giggles. We talk about bringing her AAC device to her camping trip, and I remind her that she should also take the charge cord so she knows what to expect when I pack her bag in the morning. She hugs me and I hug her back, and then it’s time to tuck in her little sister.
Not all days are relaxed and happy like this. Not all moments are relaxed and happy like this. My daughter can very often have a rough time of things, but it really feels more accurate to say that the world is quite often unkind to her because she’s different. We even sometimes have a difficult time with one another. There have been tears, there has been yelling, and it’s possible there has been worse… What you won’t read in this article, however, are specific details regarding any of her private and vulnerable moments. That story — the one that you’ll read in far too many pieces by “Autism Parent” bloggers — does not belong to me, and is not mine to tell. I have hard times as a parent, but recording my kid’s meltdowns and publicly sharing intimate details to which she cannot consent is not a thing I would ever do. Nor, I add, should anyone else.
If you’re considering writing about your disabled child, ask yourself:
- Am I being respectful of my child’s right to privacy?
- Am I wrongfully centering myself in what is ultimately more difficult for my child?
- Would my child consent to my sharing this information with strangers?
Outside of the disability community, we’re hard-pressed to encounter folks who realize that all communication is valid and purposeful, that behavior itself is communication, and that assuming competence is invaluable. K uses a combination of speech, AAC, and ASL to communicate. It’s sometimes hard for people who aren’t used to the cadence of her speech to understand her words, and that’s okay. But, the answer is not to defer to the nearest adult. Wait staff turn to me when it comes to her menu choices, health care providers ask me how she’s feeling when she’s sitting right in front of them, and relatives often ask me questions about her like she’s not even present.
I do worry for K’s future. Will she always need us for help and guidance in navigating the world? Yes. Will she always live with us and have us provide for her? Yes, and we gladly will. Will anyone care for her as well as we do when we’re gone? Of course not. I worry for her future not because of her, but because of how resistant society is to provide accommodations for those who need them even though there are laws in place mandating such. What I don’t worry about, or “mourn” as some people actually have the nerve to say, is whether or not K might ever find romantic love. My daughter’s ability to live a wonderful and fulfilling life is not dependent on her becoming romantically involved with another person!
What’s it like to have an autistic kid? It’s being aware that most studies, articles, and accompanying photos pertaining to kids like yours showcase white boys. It’s time and again seeing local news outlets put out stories and articles about autistic people from the viewpoint of not-autistic people. It’s reading, with mounting outrage, piece after piece written by people talking about how tragic and mournful having a kid like mine is for them. It’s watching the news and seeing that people are killing their children for being autistic and that these people are being defended. It’s noticing that people insist on calling them “kids with autism,” yet these same people often call themselves “autism parents.” It’s having your experiences and opinions as an autistic adult discounted when it comes to your child, because your autism is different. It’s noting with alarm that the experiences and opinions of autistic adults are being ignored in general.
It’s hurtful to see what a lot of people associate with autistics. Often, the “kid in a shower” picture accompanies written pieces: behind a pane of frosted or textured glass, a child presses their palms to it. This illustrates the harmful and incorrect notion that autistic kids are “trapped” or “hidden away” inside their autism. There is no veil or pane of glass hiding my daughter from me! The reality of autism is that it is part of my daughter’s neurology; it is part of who she is. She is exactly as she should be for she is herself, and I love her for all that she is.