National Sibling Day: My Brother Is Autistic
You may have seen the shares on social media today for National Sibling Day, and if you haven't then let me be the one to tell you, call your sister. Text your brother. Say "hey." Give them a noogie, even. It will be like old times. Hopefully, if you're one of the lucky ones, your brothers and sisters are still here and still speaking to you. I know many who miss their siblings in Heaven or wish they were on speaking terms. I have a brother. His name is Jason, and he is almost 32.
Our story is a little different: my brother is autistic.
In many ways, I grew up an only child. Jason wasn't like other people's brothers. He doesn't have conversations with you. He won't call to chat; doesn't even own a phone. He will never live on his own, date, or have children. To put it bluntly, Jason is physically almost 32, but mentally he's more like a 6 year old.
To truly understand what Jason is like, it helps to have a reference. If you want to see two cases where Hollywood really got it right, check out the movies What's Eating Gilbert Grape and Rain Man. My brother is a combination of both.
There was another piece of entertainment that made a huge impact on me because of how accurate it was: the play "The Boys Next Door," which was put on by my college drama club when I was a Freshman. (It was also made into a movie). The play is about four guys with different levels of mental disability who live together, supervised by an increasingly agitated social worker. I was fortunate enough to attend Colby-Sawyer College when both Nate and Rob Corddry attended. When the play was performed, Nate Corddry played the part of Lucien P. Smith, the character who reminded me most of my brother. For much of the play, Lucien is comic relief and very much in his own world. But there's this one scene where the playwright has Lucien step into the spotlight, suddenly lucid, and give a monologue as a normal, functioning adult:
Lucien: I stand before you a middle-aged man in an uncomfortable suit, a man whose capacity for rational thought is somewhere between a five-year-old and an oyster. (pause) I am retarded. I am damaged. I am sick inside from so many years of confusion, utter and profound confusion. I am mystified by faucets and radios and elevators and newspapers and popular songs. I cannot always remember the names of my parents. But I will not go away. And I will not wither because the cage is too small. I am here to remind the species.. of.. the species. I am Lucien Percival Smith. And without me, without my shattered crippled brain, you will never again be frightened by what you might have become. Or indeed, by what your future might make you. (Quoted from the play "The Boys Next Door" by Tom Griffin).
I often wonder, if Jason was able to step into the spotlight for just one minute like that, what could he tell us? I'll never know. It's sad that depspite knowing each other our whole lives, I'll never really know my brother.
Many people don't understand Jason. They don't understand what it takes to make sure he is healthy and happy. My parents signed away their freedom and some of their sanity when they had him, simply because there is no independence from raising and parenting a person like Jason. They do get some relief, because Jason has a job.
He works every day at a facility called Jobs Plus, where people with developmental disabilities can go to do simple jobs (Jason sorts screws, a perfect occupation for someone with his OCD-like sense of order). It's affiliated with a larger organization in our town, Stepping Stone, which is a school for developmentally disabled children. For a "small town," it's a really awesome resource, especially for stressed out families who just need a break from being "on" 24/7 with their children, many of whom need supervised feeding, constant supervision, or even round-the-clock care.
We're fortunate on many levels with Jason. While he does have his quirks and issues, he is able to function somewhat independently within his boundaries. My parents do need to monitor that he takes a shower, or doesn't get into the food when he's not supposed to, but otherwise he's very much a creature of routine and handles some of it himself. The long view of this is that Jason will always need a caretaker, and it can't be my parents forever. Eventually, he'll have to come live with me, or live in a home for people like him. Because, truthfully, while Jason ages in body, he won't age in mind.
That's one of the most frustrating things for those of us who have a friend or family member like Jason. The media wears out on adults. We hear stories and statistics about kids with autism and disabilities almost daily. But what about when these kids grow up?
They don't cease to exist. They don't get better.
They stay the same and the world goes on without them. Their families struggle to get services, to find help, to cope. Sometimes the "help" is more trouble than it's worth. People take advantage of families of adults with disabilities. People are cruel.
And then there are other people who are wonderful, and understanding, and accepting.
But the fact remains that Jason will be 32, and then 52, and maybe even 82. And he'll still be an adult with autism and mental disabilities. He'll still be a man with a child's mentality. And he'll still be my brother.
So, for National Sibling Day, I'd like to tell you 10 Things About My Brother Jason:
- He loves John Deere tractors and school buses. He Googles pictures of both and will spend hours going through different photos. We can it his "bus porn."
- He has an obsession with Legos and numbers. By that I mean, several years back, he started to use his Legos to create numbers in sequence and would line them up on his bed for the day. I'm not talking 1 through 5, but more like 784 through 792, the actual numbers formed out of Legos and made so you could hold each three digit number in your hand. Random to us, but perfectly sensible to him, I'm sure.
- My brother knows somebody everywhere he goes. The best and most brilliant occurrence of this was when we traveled to Florida in 1994 and met a family Jason knows standing at the front gate of Busch Gardens. It was unplanned and unexpected, but we ended up spending the whole day at Busch Gardens with them.
- Jason has a mental ability similar to the "toothpick" scene in Rain Man. Jason's is a calender ability, and it has gotten more refined over the years. Jason will remember anyone's birthday, including the date and the specific day of the week, no matter what year. So, if he's asked, "Jason, what week day was my birthday on in 1992?" he can usually tell you accurately. He also can recall the dates of specific life events and the day of the week those events occurred on. Makes a fun party trick, so to speak.
- Jason has a hard time with change. When an item is moved, he'll keep trying to move it back where it was until he's told enough times not to do that anymore. It was really funny in Maine, where we both grew up, when the seasons changed. In fall, my mother would close the windows that had been opened during summer, and Jason would follow right behind and open them all. Vice versa in the spring. Then there was the time change. Just when Mom would get all the clocks in the house set an hour ahead, Jason would go and change them all back.
- He has always been able to pack away more food than anyone I've met. Buffets are a thing of wonder if you eat with Jason.
- Jason has loved The Simpsons since the first season aired when he was just a kid. He had the "Don't Have a Cow, Man," t-shirt and still loves all things Simpson.
- A slight obsession with the movie "Raising Arizona" lasted years. We have no idea why this movie, but I'm sure Jason has watched it hundreds of times.
- He's a parrot. Not literally, but if you talk to him, 99% of the time, he'll just repeat back to you what you say, unless you're giving him a command. He can't tell you what he's feeling, or what he thinks about a certain subject, or what his opinion is. He knows the words, and hears the talking, but lacks the social understanding. This is the autism.
- My brother is happy.
He delights in the routines of life and in his familiar surroundings and favorite things. There are many things in this life he will never know or experience:
He did not experience the rush of holding a girl's hand as a teenager.
He will not be able to hold his newborn child in his arms.
He will never get a promotion, or start a business.
He will not drive a car, or buy a house, or buy something he's saved up money to get.
These things, that are so common to many of us, don't matter to him. These things we often use to judge our successes, our failures, and our happiness. Yet he is happy despite not experiencing these things, and in fact, will never know the difference. His experience of this life will always be his alone, and his ability to understand and convey it will always be tightly locked away in his high-functioning yet vastly different brain.
This is my sibling, my brother Jason.