By Shannon Des Roches Rosa
October 22, 2013
"Autistic people of all ages deserve extra time and effort to ensure that you're understanding their needs properly, even if what they're doing doesn't make sense to you, even if you think you know better, even if you think it's for their own good."
One message I think autism parents don't hear enough: it is so important to make time and space for our autistic kids to be themselves. To do what they like. To be completely relaxed and unstressed. To not have other people making demands on them (even to help them), to not be figuring out how to ask people for help so they can do what they want to do. Legitimate, unfettered chill time.
We try to make that time available to Leo, as much as we can: going to the beach, hiking, trampolining, swimming, all things he loves. But sometimes he just wants to sit down, sing, and pound on a damn ball. So he gets to do just that. And this is what it looks like:
He's a happier kid and we're a happier family-of-his when he gets time to be his own happy autistic self. Being Autistic and mostly non-speaking in a world built for non-Autistics means Leo spends a disproportionate amount of his time negotiating, problem-solving, or figuring out how to communicate his needs -- and not always successfully, despite the best efforts of his family, teachers, and friends. And that doesn't include sensory assaults from bickering siblings, clothing, or loud noises.
That doesn't include all the times we've misunderstood his needs without knowing we misunderstood them, because of the communication gap -- again, despite our best efforts. His life can be fairly frustrating and anxiety-ridden. He so, so, so needs time to relax and do what he likes.
This is why I think autism parents need to be extra careful to find as many ways to understand our kids as we can. We also need to pick our battles. I almost threw my computer across the room this morning in reading an autism parent's prideful recollection of how she spent hours torturing her teenage autistic daughter, demanding the daughter wear a specific item of clothing and insisting that she (the parent) was not going to "give in to autism."
The daughter did her best, used her best words, tried repeatedly to express her needs -- and ended up in tears because of a mother who would rather impose her will and "beat autism" than understand why her daughter didn't want to wear the item. Maybe the clothing was itchy, maybe the daughter's thermostat worked differently than her mother's, maybe her personal sense of style was being violated -- who knows? Certainly not her mother, who recounted her daughter's distress and attempt to negotiate at length, while crowing about not "giving in" for her daughter's own good.
I am not naming names because this parent is self-righteousness incarnate as well as an Autistic-hating, repeat offender and she doesn't deserve your attention. But it's important to spread the message that "my way or the highway" incidents like this are absolutely the wrong way to approach conflicts with an autistic child.
It's not easy to be Autistic, and it's not easy to be Leo, even though in general he's the happiest and most affectionate boy I know. So, I beg you, Please don't forget how hard it is to be an atypically-communicating person like my son.
Please share the message that Autistic people of all ages deserve extra time and effort to ensure that you're understanding their needs properly, even if what they're doing doesn't make sense to you, even if you think you know better, even if you think it's for their own good.
And, if you have the time, please help share the message that happy stimming is a reasonable and healthy thing.
About Shannon Des Roches Rosa
Shannon Des Roches Rosa's writing and interviews are featured on the Bill and Melinda Gates Foundation, The New York Times, The Wall Street Journal, MacWorld, Redbook, Parents Magazine, PBS Parents, SF Weekly, SF Gate, AOL News, and Shot of Prevention. She also writes about autism, parenting, evidence-based approaches, iPads, vaccines, and geekery at www.Squidalicious.com, as BlogHer.com's contributing editor for parenting kids with special needs, and as a co-founder and editor of The Thinking Person's Guide to Autism. She is also one of CafeMom's autism experts, and is one of Babble.com's Top 25 Autism Bloggers.
Rosa's radio interviews on autism, parenting, and blogging include KQED Forum, KCUR Central Standard, and News Talk KIRO. She has been a speaker at several conferences, including BlogHer and UCSF Developmental Disabilities. She has edited several anthologies and contributed stories to numerous books, including the award-winning My Baby Rides the Short Bus. Shannon and her son Leo were featured in Apple's iPad: Year One video, which was introduced by Steve Jobs at Apple's iPad2 Keynote in San Francisco. She, her handsome husband, and their three capricious children live near San Francisco.