Caring for Someone With a Brain Disorder or InjuryAutism, Down Syndrome, & Dementia
What It's Like to Have Autism
One of the most difficult aspects of being a caregiver for someone with autism – whether a child or an adult – is the inability to understand what it’s really like for him. Autism is a condition that can be isolating for the person who has it, and autism symptoms are tough to understand from the outside.
“I like to think of autism as a different way of being,” says Stephen Shore, PhD, who was diagnosed with autism at age 2. “It’s a nonstandard way of perceiving and interpreting the environment.”
When Jim Lyman worried about his son’s future, one that involved the challenges of autism, he thought of roses. Lyman approached an old friend, Tom Pinchbeck, whose family owned Pinchbeck’s Rose Farm, in Guilford, CT., with an unconventional idea—turn the recently closed rose farm into a program that hires and trains individuals along the autism spectrum. From this initial idea blossomed Roses for Autism, a program that provides training, guidance and employment opportunities for older students...
Read the Roses for Autism article > >
Every person with autism is different, and there is no single autistic perspective. But experts and people who have the condition say that there are some issues that are shared by many on the autistic spectrum. What are they? WebMD asked doctors, caregivers, and people with autism what it’s like to live with the condition.
2 Keys to Understanding Autism Symptoms
According to experts, the first key to understanding autism is to recognize that it profoundly alters how a person perceives the world.
“You could think of a person with autism as having an imbalanced set of senses,” says Shore, who is an assistant professor in the School of Education at Adelphi University in Garden City, N.Y. “Some senses may be turned up too high and some turned down too low. As a result, the data that comes in tends to be distorted, and it’s very hard to perceive a person’s environment accurately.”
People who don’t have autism -- sometimes called “neurotypicals” -- are naturally good at filtering out what doesn’t matter. Their senses work in unison to focus on what’s relevant. “When an average person walks into a roomful of people, he notices who they are and what they are doing, and figures out how he fits in,” says Geraldine Dawson, PhD, chief science officer for the education and advocacy group Autism Speaks.
“But when a person with autism walks into the room, he notices things that aren’t as relevant – the sound coming from outside the window, a pattern in the carpet, a flickering light bulb,” Dawson tells WebMD. “He’s missing out on the relevant details that would help him understand the situation. So for him, the world is a lot more confusing.”
The second key is to understand that people with autism are desperately trying to make sense of this chaos. Experts see many autism symptoms that are difficult for others to understand as attempts to communicate or to assert control over a baffling and disorderly universe.
“Most of the time, these behaviors are really an attempt to convey something,” says Dawson. “As a caregiver, the important thing is to recognize that and try to figure out what it is.”
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