Growing up with autism

​This is the post I didn't want to write.

When I sent out my last newsletter, as always, there was a health blurb. Since it was April, and that’s autism awareness month, I did a blurb on early detection of autism. A line in that article alluded to the fact that I grew up with two autistic brothers. Several readers then asked me to share more about that experience.

Please recognize this is one woman’s observations and path, and the interactions with my brothers and family should not be taken as a mandate, a proscription, or even as typical of experiences with autism. What I’m describing is how these two guys impacted my life, so it’s a very narrow field of vision, and purposefully so. If I sound in any way callus, please understand that’s not the case at all. It’s learned gallows humor and the ability to objectively look at things that might come across as somewhat less than introspective. Frankly, if I get too emotional about this topic, I will not be able to write this post. Period.
 
It's super personal stuff, and it’s rare that I talk freely about ‘growing up with autism’.
 
But maybe it’s time. Feels right. Seems like time to write this now that I've gotten some distance.
 
Since I love lists, and, well, they feel safe as a blog structure, then that’s how this blog post is going to go down.

So, how did ‘growing up with autism’ change me? Hard to say exactly. I have no reference point for any other way to grow up… Okay, I’ve seen plenty of “normal” families, and would often compare my life to theirs, but it’s not the same. However, here’s my best stab at what I’ve learned:
 
#1) Talking to yourself can be normal. One brother can say a single word, and the other brother has about three nonverbal signs he can throw up (one of which unfortunately is the middle finger but he doesn’t understand what it means). That meant, if I wanted meaningful conversation while hanging out with these two dudes, I had to provide it myself. In appropriate voices. With appropriate responses. And yes, that was normal.
 
#2) Compassion can be learned at an early age. One of my earliest memories was hanging out at the children’s rehab facility, three times a week in the summer. Maybe I was five or six or seven. (Maybe older than that – we went there for a long time.) I got bored. Like super crazy bored. So after watching the occupational therapist do stuff, I decided that looked kind of interesting, and I started hanging out with this spina bifida kid. Every day, I’d play out in the empty playground. (Right? Because the rehab kids couldn’t go outside and play because most of them couldn’t run around or walk.) I’d get bored of swinging and come back in the air-conditioned building and hang out with the happiest, most giggly guy on the planet. Because of the spina bifida, he was kind of schlumpy and couldn’t walk, but he tucked his legs in and scooted all over the place. So we’d blow bubbles together and I’d get him to scoot around for a half hour. No idea if this was sanctioned activity or even helpful, but he seemed tickled by it, and it was fun to make him laugh.
 
#3) Interest in science can be learned at a very early age. Especially when your brothers are super duper sick, and the doctors who treat them take time to answer a bratty kid’s (me) questions. Man, I bet we went to fifty plus doctors visits and hospital visits for my brothers before I was ten. Especially in the summer, when Mom had to drag me along. You see, my brothers weren’t just autistic. They were super-duper autistic, with massive developmental delays and severe epilepsy. So there was way more going on than “just” autism. (TBH, it’s never “just” autism, and even it if was, then “just" autism itself is plenty exhausting by itself, thanks.) So, here’s the pecking order: me, then a brother 2 years younger J, then a brother 8 years younger T. When I was young, normal life centered around keeping J alive both at home and during hospital stays. I recall days of watching him seize on the floor or the bed. Like, that was normal. Then T came along and had issues and seizures and then a bout of meningitis that landed him in the hospital. So, normal life for us involved a lot of hospital antiseptic smells, beds with rails, and IV’s. Now thirty plus years later, J is declining and frail and has been in and out of the ICU and in comas and on ventilators enough to where it hurts me to think about the suffering he’s gone through. And I wonder how much is enough. Anyway. Not my decision and a discussion for later.
 
#4) Thank God disability isn’t an average. The joke in our family – and we have many – is that if you took my IQ and averaged it with J and T’s, as an aggregate, we’d still be fully disabled. To fully understand that joke, just know that I always scored in the top decile of tests. Actually, our average might be skewed a little high only because their low scores are so low they cannot be measured. (Like the Marianas Trench of IQ scores!) J is somewhere around 9-18 month age developmentally, and T is 12-36 months or so. So yes, taken together, I still can’t even bring up our class average enough to make us a functional unit.
 
#5) Weird stuff can be normal. Like it was nothing to be changing a 10-year-old dude’s diaper and babysitting for hours while Mom and Dad went out. Granted, I was a pretty responsible 12 year old. Also weird? J had a sock fetish as part of his autism – like he’d play with socks all day long, flipping them back and forth in his hands. And because the world is made up of irony, T had a shoelace fetish and would play with shoelaces all day long. So because of them, Mom, Dad, myself, and anyone who visited went around the house in bare feet. And we locked up the shoes and socks. Seriously. You cannot make up this stuff.
 
#6) Naked can be normal. Man, there were no mysteries at our household, ever, with those two exhibitionists. J loved to swim. We didn’t have a pool, so he’d stand at the fence and stare at the neighbor’s pool. All the time. Even when they had pool parties. (These were very understanding and kind neighbors.) Unfortunately, one day, J’s diaper got pretty weighed down and it fell to his ankles. So picture this: a scrawny kid, fingers laced in the chain link fence, goofy smile on his face, staring at the pool party. And he’s buck-naked. How long he’d been out there like that, no one knew. (We didn’t have the guts to ask the neighbors.) Mom made Dad go get him, and they were both pretty mortified by the experience. J? Poor guy -- all he wanted to do was enjoy the sights and sounds of the pretty swimming pool.
 
#7) Budgeting and rationing can be normal. Man, I was such a little puke, not understanding why we didn't "have" the same things as other folks growing up. I remember being utterly embarrassed in middle school because I >only< had four tops to wear all year long and three pairs of pants. Mind you, everything was clean, but it was the discount store variety of outfits. So, not ‘cool’. Never had the fancy purses that peer pressure makes you want to buy so you can fit in. Never had a fancy house or cars that I heard kids’ parents bragging about on the sidelines of sports events. It wasn’t until many years later, that I realized that my Dad had socked away every last penny of his salary after expenses into a few key places: short-term and long-term care for J and T, my college fund, and retirement. Left zero room for anything else. We weren’t destitute at all. My folks were crazy smart with their money, and looking back, that realization taught me a lot of good lessons about prioritizing what’s really important.
 
#8) Kids in school can be little shits. Also in middle school (those are kind of hell years, aren’t they?), I was dressed in my Special Olympics t-shirt, leaving class to volunteer at the spring Special Olympics, as one does, and a snot-nosed, fancy purse-carrying, big-house living, name-brand clothing wearing jerk looked at me and asked if the reason I was going to Special Olympics was to compete? Mind you, we were in some kind of advanced algebra class at this time. I explained why, and she laughed. Like, an ice-cold, no compassion human being kind of laugh. I never really understood that those people existed. Up until then, I always figured most people were decent and kind. I was wrong.
 
#9) Advocacy can be learned early. In high school, I’d spend study hall schlepping Kelly, a nonverbal kid in wheelchair, all over the school campus. We’d roll down the sidewalk outside, through the halls, I’d talk with her, we’d sneak into the theater and I’d play piano while she laughed. Because this was normal in the way that my world worked, and yeah it was kind of fun. But what was even more fun was getting the other students in school to understand that Kelly was okay to be around, even touch her or say hi. And if a football player said hi, holy cow that was it -- she had a giant grin plastered on her face for the rest of the afternoon.
 
#10) Good stuff can be learned or developed. People can learn to be nice or compassionate. People can learn to care, even if they don’t understand how or why at first. As a physician and as a human, I contend that any piece of who I am that is good or compassionate, exists only as a direct result of my brothers. Without having grown up with the crazy and sick and twitchy and weird? Without growing up with the knowledge that these guys were always one foot on the proverbial banana peel when it came to their tenuous health? I would never understand how patients and their families deal with fear and hope. There would never be a good way to empathize and to care. Zero. Without the very normal and ordinary experience of growing up with my two strange and challenging brothers, I’d be an empty shell. Was it hard growing up with autism? Probably, I guess. But I didn’t know any different life.
 
What I do know now, is that it was worth it.
 
Please consider advocacy for autism, or any other cause that warms your heart. Don’t just sit there, do something. Go on a sponsored walk, volunteer, reach out, or donate a little. If everyone did even a tiny something extra, this world would be a million times better for everyone in it.