But among those who reported having difficulty, 67 percent said they regularly drive an hour or more for services.
Five of the 10 "best places" to live are in states that have enacted autism insurance reform that requires insurers to cover screening, diagnosis and treatment for people with autism. Overall, about half of states have enacted reforms, while others have legislation pending, according to Autism Speaks.
Besides reporting a lack of services, a majority of respondents (83 percent) said they had difficulty finding "appropriate" recreational activities, such as programs for kids with special needs.
Another challenge for families with an autistic child is balancing work with caregiving. Only about 55 percent said their employers had flexible policies that enable them to work and take care of their child.
"If you have a child or a teen with autism, often their needs consume almost every moment of your waking hours," Roithmayr said. "We have had so many instances in which the mom or dad has had to quit a job to stay at home to make sure the coordination of services is happening and that the child's needs were being met."
That's the decision the Pauruses made. Bill stopped working to care for Brea and their 2-year-old daughter, while Kristen kept her job, in large part because it offers good health insurance, which they need to pay for Brea's treatment, she said.
"This is affecting corporate America in huge ways, but corporate America has not addressed this yet," Roithmayr said. "A really good or family-friendly employer would understand that when you have a child with autism, at any moment of any day, you may have to be out of the office attending to his or her needs."
Despite the stress that can come from constant caregiving, few families said they could get respite care, which offers parents a break to run errands or go out to dinner without their child. M
All rights reserved