Autism affects the way a child perceives and experiences the world. Besides having trouble understanding what’s going on around them, these kids may feel out of step with the rest of the world, without understanding why. “They may feel like they’ve been put down in a foreign country where they don’t know the language or the culture,” Dr. Coplan says. “They don’t know what they’re supposed to do. Most of us know or learn these things intuitively -- those with ASDs do not.” Generally, kids with ASDs like to have routines, structure, and sameness in their lives because this helps lend a sense of order and stability to what otherwise seems like a highly confusing world. For kids with ASDs, "it's like trying to break the code to how the world works and the code is forever changing," explains Dianne Zager, Ph.D., the director of the Center for Teaching and Research in Autism at Pace University.
Children with an autism spectrum disorder need routine partly because they’re rigid in personality and partly because they need to know where they are in time and space and what they should do next. Having consistent routines helps orient them and give them a sense of purpose. As a result, for many children with ASDs, even a slight change in plans for the day or bedtime or eating routines can be extremely upsetting, leaving them feeling disoriented.
- “Hunter is rigid and not accepting of changes in routines so we must always drive the same ways; food must always be presented the same way,” says Jennifer Polkes, of her six-year-old son who was diagnosed with PDD-NOS when he was three. “The world is big and scary and threatening to Hunter -- he is in constant fight-or-flight mode. He has seizures so his mind and his body are completely out of control. Every event and activity must be handled with preparation and discussion beforehand so there aren’t any surprises because the unexpected is like dropping a bomb in his brain -- he can't handle it. When he is stressed, he will have a catch phrase -- something completely illogical or out of context -- that he will scream over and over and he’ll rock his body until he can settle.”
- Judith Ursitti’s six-year-old son Jack has severe autism and didn’t start talking until he was five. “He has a paralysis in his communication,” says Ursitti, also a mother to an older daughter not on the spectrum. “He wants to communicate and be engaged but for many years he had no way of overcoming that paralysis. The world kind of opened for him when he started learning to communicate with pictures. That was life-changing because at least we were able to get inside his head a little bit.”
Some children with ASDs also have sensory processing challenges -- the world seems too loud, too fast, too bright, and too overwhelming -- which can make everyday experiences difficult for them and for their parents to negotiate.
- “From the ages of three to six, the lights in the grocery store were too bright for Lauren, there were too many people, the ceiling was too high -- it just made her crazy and over-stimulated and she’d start screaming,” recalls Summer McFarland, a mother of three girls, referring to her middle child, now 11. “I’d have to line a shopping cart with pillows, put a blanket over Lauren on top of the pillows and put a baby toy in to distract her -- just to get my grocery shopping done.”
- “I would liken it to a person trying to watch a massive wall of a thousand TVs, each having its own channel, and all at maximum volume -- that’s how my son Noah experiences the world,” says Joseph Quianzon, a father of three, whose five-year-old son Noah has moderate autism. “To help minimize the over-stimulation, we built a distraction-free quiet room in our home, which has really helped Noah. His eye contact and interaction in this room are so much better inside than outside the room.”