What It's Like to Have Autism
For caregivers, understanding autism symptoms is key to coping with them.
Common Autism Coping Mechanisms
People with autism may use some of these behaviors to try to impose order on their world:
“Stimming.” Short for self-stimulatory behaviors, this includes all sorts of things: flapping hands, echoing phrases, making noises, and walking in circles. Sometimes, these autism symptoms can be self-injurious, like head banging.
To outsiders, these may seem some of the strangest autism symptoms. But Dawson points out that they’re really not so different from all sorts of habits that lots of people have – biting fingernails, fidgeting, or bouncing a knee. People with autism might have more severe versions of these behaviors.
Many with autism characterize stimming as pleasurable; for some, stimming is a way of coping with a stressful or overwhelming situation. It can also help them concentrate. McGreevy says that her son’s particular habit is to rub the back of his neck – even to the point where it’s raw or bleeding – especially when he’s reading. “I think it somehow helps him focus on the book instead of the 15 other things that are going on around him,” she says.
Compulsive organization. Caregivers are sometimes confused, and awed, by the obsessions and compulsions that people with autism exhibit. “As soon as my son gets home from school -- within 15 minutes -- he’ll have a hundred toy dinosaurs lined up in a single file in his room,” says McGreevy. “It’s so bizarre and it still astounds me.”
A seemingly compulsive need to organize and arrange objects is a pretty common autism symptom. “We like order,” says Berman. “Some kids arrange items by size, some by the same sequence of colors. They do it the exact same way, day in and day out.” That organization can extend to how they break up their days. People with autism may rigidly adhere to a schedule. If it’s disrupted, they can become distraught.
For a caregiver, accommodating these needs can be difficult. A very minor alteration – a single book put upside down on the shelf, a cabinet door left open, an unexpected day off from school -- can trigger panic. But to people with autism, the disruption might feel like much more than it would to you. Seeing that single upside down book might make them feel as if the entire bookcase had been ransacked and its contents scattered.
It’s difficult to say exactly what motivates these obsessions and compulsions. But Shore believes that these autism symptoms are a reaction against the disorder they perceive in the world. “I think it’s another attempt to bring order and sense to an environment that seems chaotic,” says Shore.
Intellectual obsessions. This is another common autism symptom: an exhaustive and staggering knowledge of a particular subject. To outsiders, these interests can seem baffling. And when communication is so difficult already, it can be frustrating when all your loved one wants to talk about are baseball stats or the nuances of the side arms of different Star Wars characters.
Again, it’s important to understand that these obsessions might serve a function. In a confusing world, a specific interest -- over which the person with autism has total mastery -- can be like an anchor, grounding him. And while these autism symptoms may sometimes be frustrating for a caregiver, they also have a benefit: They offer a way in.
“If you have a child with autism who’s obsessed with SpongeBob, then you had better learn a lot about SpongeBob too,” says Berman, “because that’s how you can talk to him.”
Shore agrees. “I think the best thing for a caregiver is to find out what a child’s interests are and to start interacting through those interests,” says Shore.
How? McGreevy gives one example. When her son gets overwhelmed by a situation, she talks to him about his favorite subjects, animals and dinosaurs. Her effort to connect with him on one of those topics -- on his own terms -- can really help calm him down.