Self-injurious behavior can be another frightening consequence of being on the autism spectrum, because these individuals do not process pain signals the same way a neurotypical person would.
"A lot of individuals with autism have reduced sensitivity in the hands and feet," said Ian Paregol, executive director of CSAAC, citing examples when autistic people will stomp around or tap on walls. "They want to figure out where they end and that wall begins."
But while repetitive behaviors, such as tapping on walls or rocking back and forth, are hallmark behaviors of autism, the problem occurs when these behaviors escalate and the autistic person begins hurting themselves or someone else. And constant vigilance can be draining to a parent or caretaker.
"You don't get a break, and it can be draining," Shinnar said. "They need a lot of structure. Left to their own devices, their lack of ability to communicate in the social sense, even when they can talk, is when they get into trouble."
But leaving people on the autism spectrum to their own devices is one of the goals of the educational and therapeutic picture for a family, which can be the most challenging and frightening part of the disorder.
"As a parent, your nature is to protect," said Marguerite Colston, a spokeswoman for the Autism Society of America. "Sometimes fear of these risks ... can cause you to exclude a person with autism from their community.
"Our biggest sin is we're so protective."
Even after three higher education degrees, marriage, and three children, Willey said she can still feel uneasy, never quite knowing whether something is true or not.
Read/Watch the Entire Series: Autism in America
"I think some of the vulnerabilities are forever," Willey said. "I don't know if we learn not to be vulnerable, but we learn to cope with it."
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