Time to meet another member of Kiddo's squad. Allow me to introduce my brother, "Uncle D". Technically speaking, he's the real writer of the family. (Unlike me and my one trick pony topic of autism.) I thought it would be interesting to explore the ripple effect of autism with the extended family and he was game/felt guilty for all those times he let the see saw slam down to the ground by getting off of it suddenly causing me to land on my ass. (Not that I'm bitter about that.)
So take it away Uncle D!
What is one thing about autism has taught you?
"I guess the simplest answer is don’t assume anything. You have that line that if you’ve met one person with autism, you’ve met one person with autism, and that certainly seems true.
As a teenager, I suppose like a lot of people my first encounter with autism was through the movie “Rain Man,” which told me autism meant a fixation with odd things, being withdrawn from human contact and an ability for astounding math parlor tricks. And for some people that’s true. But from firsthand experience with Kiddo, I now know that’s only a portion of the population. Kiddo shows the fixation behavior, but he’s not withdrawn at all. He’s a very affectionate boy, one who certainly knows how to love and feel loved.
And then I think of one of my son’s old Cub Scout buddies who has autism. He’s a sweet-natured kid, a little socially awkward but otherwise well accomplished and you might not immediately know he’s on the spectrum; I know I didn’t. Some of my old friends have children with autism, and I follow their stories on Facebook, and I’m struck by the wide variety of experiences. The one common thread is every parent just wants their kid to have the same shot at enriching experiences; i.e., just like parents of neurotypical kids."
How did you talk about autism and special needs with your kids?
"My kids are just a little older than Kiddo, so they’ve grown up with him, and thus autism has been something we’ve gradually discussed as my kids got older and could understand more. The one thing I’ve found is if you discuss these things in a matter-of-fact way with your neurotypical kids, they’ll treat it in a matter-of-fact way. If you freak out, your kids will freak out.
If you explain calmly something like, “Well, people with autism have something different with their brains, so sometimes they’ll say or do things we don’t understand,” they’ll accept that the same they’ll accept just about any wisdom from a grownup explaining the world.
I think the most important lesson is even though we make it clear Kiddo has special needs, that doesn’t mean he should get “special” treatment. He’s still a kid who likes to have fun, just like they do. We’ll laugh about some of his behavior, but with a sense of inclusiveness; we laugh about goofy things that all members of our family do, including ourselves. Kiddo might not be able to play with them in a way they’re used to, but he’s not a delicate vase to be treated at arm’s length either."
What kinds of things about autism would you want to know more about?
"I think the questions I have are probably the same as parents of children with autism have, though far less detailed, since my experience of it is mostly from family visits and reading your blog.
I guess the biggest thing I would ask for is patience. We’re never going to know as much about autism as parents of children with autism do. We’re bound to ask blindingly obvious questions. I’ve learned some of the lingo, and learned to use terms like “neurotypical” in describing my kids, but I think it’s important to remember if a relative or friend says something like “normal” or “regular” instead, it’s almost never meant to give offense; it’s just a puzzled groping through an unfamiliar language.
I have an advantage in that if I want to know what you’re going through, I can read your blog. So I’m probably more aware of the details of struggles you go through then I would be otherwise, because discussions of, say, public bathroom difficulties don’t normally come up at family get-togethers. I really would recommend blogging for autism parents, even if your audience is just a half-dozen people. It gives people a peek into your life, good and bad, and helps us be sensitive to ways we can help (or at least not hurt)."
What’s the one thing about autism that surprised you?
"I guess the biggest thing is what I mentioned above, which is the experiences of autism vary so greatly. I get annoyed when terms get used a bit flippantly in casual conversation in society, like calling someone “Aspergery” when describing any persnickety behavior, since we all have our quirks. But given how broad autism can be, I understand the instinct.
In some ways, however, maybe the broadness of the spectrum is good. Autism is a label that forces me to look deeper. I can’t pretend to know much of anything about the person with autism until I actually meet him or her, just like I can’t know about anybody else in the world."
You work in media. Does having a nephew with autism change your perspective and/or viewpoints about disability? Do you feel that’s crossed over to your work at all?
"It’s certainly made me more aware of how common disabilities are, particularly autism. It’s also made me a bit allergic to “pity party” stories, in which anyone with a handicap — or their caregivers — is treated as a sinless hero just for waking up in the morning. Remarkable activity deserves to be highlighted by describing it, but it doesn’t do people with disabilities any favors to treat them as inherently morally perfect people. It’s condescending, and makes them more difficult to relate to as a fellow human. If I were to write a story about Kiddo, it wouldn’t be filled with purple prose about how he’s a angel. It would tell people about a kid who loves singing at the top of his lungs, enjoys playing with his dogs, can get cranky when tired and is working really hard to adapt his social behavior to the wider world. He’s a real person, not a statue.
On a far darker note, we recently covered a horrific crime in which a local teenager has been accused of killing his parents, sister and family friend. Neighbors said the teen had autism. One of our followup stories was on autism and violence, since people naturally thought of Adam Lanza and the Sandy Hook shooting.
It made me instantly nervous, because I knew if we ran a half-assed story on this, one that essentially left open the notion that autism makes kids into ticking time bombs, we’d be quite rightly crucified by the autism community.
At the same time, it wasn’t something that could be responsibly ignored. Even if we refused to address the topic, readers certainly would. Again, most people outside this world don’t understand autism. Refusing to discuss it would essentially suggest we were hiding something.
We had an excellent, sensitive writer take on the topic. He was able to demonstrate there’s certainly no predilection toward violence among people with autism; the numbers show they are less likely to be violent then the general population. But at the same time, it’s not unheard of; while cases of murder were mercifully rare, there certainly are cases where young men with autism have acted out violently. In other words, people with autism are just like people without autism; you can’t make assumptions about them one way or another.
Some readers were still very upset; others were quite appreciative (you can’t please everybody). I was only tangentially involved with the story, but if I had seen gaping problems with it, my family background would have led me to raise all sorts of red flags before we ran it."
So there ya have it. He's not half bad and Kiddo likes to call him "Uncle Pizza" because that's what we usually eat when we are over at their house. He also lets him vacuums his house when he's watching the Kiddo for me. Yep, he knows how to show him a good time.
True story. This is the photo ID that comes up on my phone when he calls me. Uncle D is a HUGE Star Wars fan and was aghast that I married a Star Trek fan. I don't think he ever got over it.
