April 1, 2011 -- New York, Los Angeles, Chicago, Cleveland, Philadelphia, and Boston are some of the top cities in the country for families raising children with autism, a new survey shows.
The survey was conducted by the nonprofit advocacy group Autism Speaks. It’s the first to rank metropolitan areas on how well they provide educational, medical, and recreational resources for children with autism spectrum disorders, and flexible employment policies and respite care for parents. It includes responses from more than 800 people affected by autism in 48 states and the District of Columbia.
Rounding out the top 10 are northern New Jersey, Minneapolis-St. Paul, Seattle, and Milwaukee.
“We really wanted to get a pulse of the autism community across the United States,” says Mark Roithmayr, president of Autism Speaks. “What were the things that were most important to them, and what were the things that made the biggest difference to them in their lives.”
Satisfied families, who represented only 26% of respondents, say that they are generally happy with their local schools. They also say they are able to find and afford good doctors and clinical care and are able to work flexible hours and find recreational opportunities, like challenge little league and specialized summer camps, for their kids.
A relatively quick drive -- less than an hour -- to school, doctors, and other services was another attribute of top-ranking cities.
Outside of those relative bright spots, however, the survey painted a bleaker picture of the struggles faced by families with autism.
Across the country, 74% said community services were generally unsatisfactory.
Among the states with the highest number of negative responses in the survey were Texas, Virginia, Tennessee, Ohio, Florida, Michigan, and California.
Across the board, however, a major deficit in support involved the ability for exhausted parents to get a break through respite services.
Even among people who said they were generally happy with support services in their community, 75% said they had no access to respite care.
The Growing Burden of Autism
Autism spectrum disorders (ASD) are neurodevelopmental conditions that are characterized by difficulties with speech and communication. Autistic children often have trouble with social interactions and they may exhibit repetitive behaviors, like flapping their hands or rocking.
For reasons that aren’t fully understood, diagnosis of autism is on the rise.
“Our current estimates are about 1% of children with an autism spectrum disorder, and that’s about 10 to 20 times greater than estimates from before the 1980s,” says Catherine Rice, PhD, epidemiologist and developmental psychologist in the National Center on Birth Defects and Developmental Disabilities at the CDC.
Part of the rise is probably because of better diagnostic criteria and more awareness of symptoms, which has led to more children being identified, Rice says.
“The large increases in the number of children being identified certainly has major consequences for the individuals affected and for the school systems in the communities that are trying to keep up with the unique service needs of people with autism,” Rice says.
Families Say They Need Better Support
Among people who felt a general lack of local support, 83% described the extensive lengths required to find appropriate classes for their kids, including hiring special placement experts, needing to change schools or districts, or having to hire lawyers to get schools to comply with legal requirements for equal education for kids with special learning needs.
Getting good medical or behavioral health care was also a problem for many families. Among those who said they were generally unhappy about services in their communities, 75% said they couldn’t access needed medical or mental health services, including Applied Behavioral Analysis (ABA) therapy, which has been shown to improve the ability of people with autism to function over the long term.
Access is the ability to both find and afford needed services. Currently, about 25 states mandate that insurance companies cover treatments such as ABA therapy.
But qualified therapists may be hard to come by, requiring a long drive or long waits, or both.
“You not only need to be close, but you need be able to access it. You need to know that you’re not going to end up on a 12- to 18-month waiting list to get in,” Roithmayr says.
Flexible work hours are also often lacking for parents with autistic kids.
According to the National Survey of Children with Special Health Care Needs, which is conducted by the Health Resources and Services Administration (HRSA), parents who have autistic children are more likely to struggle financially, and more likely to reduce or stop work to take care of their kids, compared to families with children who have other kinds of disabilities.
“The differences were phenomenal to me,” says Michael D. Kogan, PhD, director of the office of epidemiology, policy and evaluation at the Maternal and Child Health Bureau at HRSA.
“Almost 60% of parents of kids with ASD said they either had to reduce or stop work because of the kid’s condition vs. 36% for kids of parents with other emotion or developmental disorders and only 17% of kids with other special health care needs.”
How to Help
Saturday, April 2, is World Autism Day, and advocates say there’s plenty people can do to help.
“Everybody knows somebody touched by autism,” Roithmayr says. “It can be just as simple as somebody going to a mom or dad that they know who has child with autism and saying, ‘How can I help?’”
Just offering to stay with an autistic child for a few hours, or offering to run an errand, can give harried parents a badly needed break.
“That would make a big difference,” Roithmayr says.