Fenway Park, the State House, and the Prudential Tower are just a few of the buildings that will be lit up in blue lights on Saturday to mark World Autism Awareness Day. But those symbolic marks of support aren't the reason why Boston ranks No. 4 in a survey out today as one of the 10 best cities to live in if you or your family member has autism.
"There were a number of factors that put Boston on top," says Mark Roithmayr, president of Autism Speaks, the nonprofit advocacy group that conducted the survey of 848 families with autism in 48 states. "Proximity to services, access to services, and education in both public and private schools for children with autism."
Natalie Lambert, 29, of Tewksbury, tells me that she's been amazed by the services afforded to her two sons, ages six and four, who were diagnosed with autism in 2009. "Their initial evaluation was mostly covered by my Blue Cross Blue Shield insurance. I had to pay about 10 percent of the fee," which came out to $500 for the $5,000 two-day evaluation of her older son at Massachusetts General Hospital's autism center.
Lambert's sons, who attend the Loella F. Dewing public elementary school in Tewksbury, have caseworkers who keep track of their needs, mainstreaming them into regular classrooms with their peers for as much of the day as possible.
"My older son, in first grade, now spends all of his time in a regular classroom with an aide to help him out," says Lambert. Last year, he spent half the day in intensive therapy to teach him social and behavioral skills, so he would, say, learn to ask questions or play by other kids' rules, not just his own. Lambert's younger son goes to regular pre-school for two hours a day and gets another 3.5 hours a day of therapy.
The cost to Lambert for all these educational services? Nothing.
Last year Massachusetts became the 23rd state to pass legislation mandating insurance coverage for autism therapies. Those in states without such laws typically pay $1,000 to $4,000 per week in out-of-pocket costs for private therapists and programs.
Beyond costs for services, Roithmayr says, cities that are autism-friendly tend to have employers with accepting attitudes toward the condition. "Survey respondents from Boston and other cities that ranked in the top 10 [such as New York, Chicago, and Philadelphia] reported that they had flexible employers who were empathetic and understanding that autism is 24/7 for parents," he says.
Allowing employees to work flexible hours when, say, a child has a meltdown at school, can be extremely helpful, since lost work time results in an average loss of annual income of $6,200 for parents raising an autistic child, according to a 2008 Pediatrics study.
What still needs to be improved? Wait times for diagnosis. Lambert says she had to wait a year to get her older son diagnosed at Mass. General, which Roithmayr says isn't unusual; parents typically wait 6 to 18 months to get their child in for a diagnostic evaluation, which means a delay in getting treatment as early as possible.
"The earlier the intervention, the better the outcome," Roithmayr says. That's why the American Academy of Pediatrics now recommends that all children be screened by pediatricians for autism before age 2.
The other element lacking even in top-ranked cities is the availability of respite care. "There's not enough respite care for families," says Roithmayr, "in Boston and elsewhere." Local communities don't have much in terms of organized care services for families once the school day is finished and therapy is complete. "Parents need a break, whether to spend time with their other children, running errands, or going on a date with each other. We're hoping to see this improve."
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