When Husband and I find ourselves in social situations with our daughter, we often wonder if and when we should “play the a-card” as I put it. That is, when is it better to tell people she has autism as a way of explaining strange behavior vs. not singling her out as different. In the past I think I have been to quick to blurt out “she has autism” because I often get denials like “oh, she’s so young, how could you know that” or “she seems normal to me” (see my post on Breaking the Parenting Mold called “Stop Trying to Convince Me My Daughter Doesn’t have Autism”). So now I try to hold my tongue, because I recognize that while her stimming behaviors or language delay or lack of social interaction may be obvious to me, it’s not always as obvious to others, and it’s usually better for everyone if people treat her like every other kid. Most people write off her odd behaviors as just being a toddler. It’s only after spending a lot of time with her that the differences become more obvious.
There’s also that look that I get when I say “she has autism.” A look of pity and confusion, followed by other parents keeping their distance. I’m willing to bet every parent of a kid with “special needs” knows that look. Or, less commonly, “oh, my sibling/cousin/friend’s sibling has autism!” followed usually by a description of how they function as an adult, ranging from “she lives in a group home, but seems to like it there” to “he made it through college and has a good job now.”
Sometimes though playing the A-card is necessary and can illicit help and understanding we might not otherwise get. For example, we took our daughter to an event with bouncy houses. She’s obsessed with her shoes and screams at taking them off, but wanted to get in a bouncy house. The employee supervising said that kids had to take their shoes off, but when we tried she screamed and it was clear that removing her shoes was traumatic for her. We explained that she is autistic and the employee kindly made an exception and allowed her in with shoes.
So readers (all 10ish of you?) when do you play the A-card for your kids/relatives, or for yourself if you are on the spectrum? What results have you gotten?
This week I’ve been attending a scientific meeting. It’s been a very good meeting both in terms of the things shown and discussed, and in terms of the networking opportunities and collaborative conversations I have had. But it’s brought to the forefront of my mind the issue of travel when I have an autistic toddler.
I try to reduce how many meetings I go to every year, because it’s always hard on my daughter and husband. This year, it’ll end up being 3 meetings, all of which will be 1 week or less. At least in my field, this is fairly low. An informal survey of colleagues gave numbers in the range of 3-6 trips/year, with some of those being multi-week long workshops or scientific expeditions.
Meeting travel is fundamental to my job in a few ways. It’s key to keeping up with the current research, to getting my own research out there, and to building and maintaining collaborative relationships. Reputation really matters in science, especially as I contemplate going up for tenure in a few years. And reputation is largely built at meetings. Meetings are also the place where I get to concentrate on just science for a few intense days. 95% or more of my original scientific ideas come to me during meetings as I absorb other people’s results and have in-depth scientific conversations. I always come home re-invigorated and excited to do new research.
On the personal front though, it’s difficult. People sometimes to say to me “just bring your husband and daughter along with you!” Some people do this, and in fact, we did try it once. But as anyone with a kid knows, travel with your kid is hard. Travel with an autistic kid is really really hard. She can’t sleep in strange spaces. She melts down in loud, crowded environments. She stops eating pretty much entirely when she travels. It’s bad enough that we’ve contemplated refusing to travel with her at all, even to visit relatives. So bringing the kiddo is not an option. At home, she and daddy get along OK without me for a few days. But of course it’s much harder on daddy doing it all by himself. And for the first day or two, there are usually more meltdowns and more defiance as she realizes mommy isn’t around.
So there is a clear personal-professional tension that comes up every time there’s a meeting in my field. Like all things, it’s about priorities and balance. I do wonder if meeting travel will get easier (ha) or harder (probably) as my kiddo gets older. If any readers out there have any advice or personal experiences balancing these issues, I would love to hear it.