For those who don’t know, autism is something very close to my heart thanks to the fact that my charming, awkward, sweet and utterly aggravating younger brother Danny has Asperger’s Syndrome.* With this post I wanted to share a couple of things including what it was like growing up with autism and a couple of resources for learning more about it.
(* Yes, technically Asperger’s Syndrome is no longer being used as a medical term, but it referred to the more mild half of the autistic spectrum, and is still an accurate way of describing Danny.)
First off, when talking with people who have had little experience with the topic, my favorite way to introduce them to the world of autism is to recommend the book The Curious Incident of the Dog in the Night-Time.
Written by Mark Haddon and published in 2003, the mystery novel is told from the perspective of a severely autistic 15-year-old boy named Christopher as he tries to figure out who killed his neighbor’s dog. Throughout the novel the reader gets to experience what life is like for Christopher as he explains how he sees the world and travels from his sheltered world in a special school adapted to his needs through the public transportation of London in a quest to find the answer to his mystery.
While this journey seems fairly simple, even the smallest interaction is fraught with difficulties for Christopher. The reader quickly comes to understand the challenges when at the beginning of the book Christopher meets the policeman who comes to investigate the dog’s death. The kind-intentioned police officer gets more and more suspicious of the strangely-behaving teenage boy hugging the dead dog, and when Christopher won’t follow the police officer’s order, the policeman grabs his arm. Because of Christopher’s autism, however, he won’t allow anyone to touch him and immediately lashes out and strikes the policeman. And so fifteen-year-old Christopher ends up getting thrown in jail for assaulting a police officer.
The book also has more lighthearted moments as well, and moments that while a little sad can also be incredibly amusing. It is a fairly light, easy read, and does a great job of putting the reader in the shoes of an autistic person and seeing what life is like from that perspective. I highly recommend it as a book, and think it is the easiest way I’ve come across of understanding the complicated world of autism.
In school I wrote plenty of personal pieces on the topic of autism, although nothing anywhere near as good as Mark Haddon’s book. Autism was one of my favorite subject matters for several of my creative writing classes, and I found that in many ways I used these writing assignments as an almost therapeutic way to process my own experiences and emotions around the topic. A lot of it was fairly terrible writing, but some of the pieces I felt managed to capture the right feeling. The following poem I wrote for class in high school, and while it doesn’t have a lot of poetic merit, it helped me to express the experience:
Where He Cannot Change
His hoarse voice is disappearing loudly
As his bathroom on the other side of the wall rattles
With his anger, his frustration, his incapability
Of dealing with the world around him.
He stares into the mirror and sobs
“I hate you”
The whole house hears him
How can we not
And we hurt with him.
We have tried to help
Tried to smooth his way
But we cannot help him there—
Inside his agonized brain
Where he was made,
Different and difficult,
Where he cannot change
And where he is torturing himself
As we all listen.
I also wrote a creative nonfiction essay on the topic that I thought turned out reasonably, but as its about 15 pages its a little big long to share here…
Another thing I came across recently is the charity Autism Speaks. I found them through Sevenly, a clothing store that sells designs for a different charity each week and donates proceeds to them. A while ago Sevenly featured a design with a lion’s head and the phrase “Live Loud,” for the charity Autism Speaks. “Live Loud” is an embodiment of what Autism Speaks does: provide communication therapy for severely autistic children so that they can learn to actually communicate with the world around them. The shirt immediately reminded me of my excessively loud-mouthed brother, and when I thought of the huge amounts of resources in terms of time, energy and money that my parents poured into a variety of communication therapies for Danny, and knew I had to get the shirt.
Danny is very high functioning, and in fact most people would probably not guess that he’s autistic, just awkward, occasionally tactless, very rule-bound and a little strange. The children that Autism Speaks helps, on the other hand, have low-functioning autism and hardly communicate with the world around them at all. But even though Danny has always been high functioning, and can muddle his way through the world fairly well at this point, there was still such a gamut of help that my parents found for him that I find it hard to wrap my head around it now. For example for several years Danny would meet once a week with a speech therapist at the local Starbucks, where he would get coached and practice regular interpersonal interactions such as striking up a conversation with the barista. Unlike most of us, who figure out based on social cues if a comment is socially appropriate or not, or what is expressed with a slight change in tone of voice, Danny had to be taught all of that.
I’m still amazed at the effort my parents put into helping Danny, and the effort that Danny had to put in every day to learn how to deal with a world that he couldn’t quite figure out and that couldn’t figure out him. But what is perhaps more important at this point, having achieved so much, is to now accept the autism and put it behind him as something that no more defines him than having wavy brown hair. Yes he is autistic. But he is also someone who loves cliche movies and bad puns, who prefers to play games cooperatively rather than competitively, who is a sweetheart of a boyfriend and never notices when he is talking with his mouth completely full of food. Most importantly to me, he’s my brother.
I am happy to talk more about autism with anyone who is curious. It is important to me that the world understands my brother—so often growing up he interacted with people who didn’t realize why he behaved differently and who therefore ended up treating him cruelly through their ignorance or apathy. So if you have a question, comment, or just a story to share, please let me know!