It’s a question every parent asks themselves now and again, but one that I actively avoid.
Around the time that Ben’s condition became an official, professionally validated thing, I remember a whirling, sick feeling as I was wondering, “What does this mean? Will he go to college? Will he be able to live on his own? Have a ‘normal’ job, Have a committed relationship?”
These thoughts are common for many parents in that post-diagnosis period. Whether the realization sinks in slowly over time or a professional passes swift judgment, there’s a turning point where you say, “Okay. It’s official.” Where suddenly you feel like you’ve awoken in a different world.
But I know now that it’s not a different world. It’s the exact same world, and your child is the exact same child he was before someone attached a label, and you love him just as much as you did yesterday.
So I snapped myself out of that whirling, sick feeling by deciding that I would not speculate on Ben’s long-term future, but concentrate on the here and now.
This is not, let me tell you, my strong suit. I am a black belt in worse-case scenario generation. I actually enjoy planning and forecasting to the extent that I think I should list it on Facebook as an interest.
But I’ve been able to let go, for the most part, of worrying about Ben’s future.
I watched this piece that aired on Nightline about going through adolescence with Asperger’s. The video features profiles of Daniel, a college student and Noah, a middle school student and their struggles and successes with surviving adolescence on the spectrum.
After I watched it, I could not stop thinking about these two young men. I felt so drawn to both of them and was moved by how articulate and conversational they were – not what we’re generally led to expect of an individual on the autism spectrum. They struck me as kind and gentle souls – the type of people we need more of in the world.
But I also was immediately aware of those very subtle things that made them different.
Daniel and Noah are probably 80% similar to their peers and 20% different. But ratio might as well be flipped to 20/80 when it comes to how they are perceived in a world where conformity and perfection are expected.
I acknowledged – reluctantly - that I would probably pick out and focus on these differences, too, if I encountered an individual like them in the workplace, in a job interview, at a dinner party or other social gathering.
And I thought about the way I use to dread meetings with a programmer I worked with once (who now, in retrospect, I suspect has Asberger’s) because his constant, lengthy dives into unnecessary minutiae exhausted me and frustrated me. His inability to censor himself drove me crazy. I admit avoided him when I could.
And lately I’ve started wondering about Ben. Will people know, immediately, that there is something about him that does not conform? More importantly: will that limit him?
Or are the real limits really just my own perceptions and expectations for him?
The authors of two of the blogs that inspire me on a weekly basis, The Family Room and Good Fountain, each have posted on that same question, so there must be something in the air.
Here’s Susan of The Family Room:
When it comes to the whole "normal" thing, we've gotten a bit of a free pass up to this point. After all, a quirky four-year-old is cute. But an older child? An adult? That's an entirely different proposition. And so we are back to the eternal question of what is "quirkiness" (lovable eccentricity) versus "disorder" (off-putting). It's a value judgment, plain and simple.
Maybe with all of the mainstream media attention that autism is getting these days – autism now has its own day, after all, like Mothers and Flags - the world will be a gentler, more accepting place for Ben than it has been for Daniel and Noah. Maybe the world will be more able to embrace that quirkiness rather than seeing it as a disorder.
So at the moment, I’m still amused when Ben, for example, spins around in circles when he’s trying to listen intently as I describe the plan for the day. If he’s still doing that at 12, well, we’ll cross that bridge when we come to it.