Prevalance is rising. Pennsylvania Department of Welfare's Bureau of Autism Services reckons that between 25,000 and 30,000 state residents are on the spectrum.
Screening is a problem, as pediatricians in the area are lagging.
Meanwhile, the commonwealth is among the states the CDC monitors through its Autism and Developmental Disabilities Monitoring Network. The network's most recently published surveillance year, 2006, estimated that 8.4 per 1,000 children in Pennsylvania had an ASD, a 58 percent increase in total prevalence, from 1 in 190 children in 2002 to 1 in 120 children in 2006.
That's among the lower prevalence rates among the represented states, said Jon Baio, epidemiologist with the CDC's National Center on Birth Defects and Developmental Disabilities and principal investigator for the ADDM. Specifically, one of the factors influencing the numbers is that the ADDM doesn't have access to children's educational records in Pennsylvania, he said.
That said, the state is progressive on the policy end, Mr. Baio said. "A lot of programs have been added there in recent years. That bodes well for children with autism," he said.
A study by the Commonwealth Medical College shows less than one in 10 autistic children locally are diagnosed by pediatricians or family doctors at a well-baby visit. The study also found that children who are diagnosed during a well-baby visit are generally younger than children diagnosed by a specialist.
"Red flags" that could indicate to parents that their children are not receiving necessary services include problems contacting school district representatives or feeling like the individualized education program, or IEP, does not meet the students' needs, [attorney Drew] Christian said.
"The non-responsive school district is a big reason why (parents) should be concerned," he said. "That's probably the biggest thing. If they are looking at the school district's evaluation (of the child) or IEP and at the end of the document they can't say, 'This looks like my kid,' then something is wrong in the evaluation."
And a story profiles an advocacy group, Parents Loving Children through Autism (PLCTA).
Signed into law on July 9, 2008, the Autism Insurance Act requires certain private health insurance plans to cover the cost of diagnostic assessment and treatment of autism spectrum disorder for children and adolescents under 21, according to state Department of Public Welfare.
"Pennsylvania was one of the first to pass a comprehensive autism insurance act," said Nina Wall-Cote, director of DPW's Bureau of Autism Services. "Prior to this, many insurance companies had an autism exclusion."
But the act only requires private insurers to cover up to $36,000 in autism treatment each year, and it does not apply to self-funded, employer-provided insurance plans or for plans covering less than 50 employees.
If an autistic child is covered under an excluded plan, or if the cost of treatment exceeds $36,000 in one year, "medical assistance is the safety net," Mrs. Wall-Cote said.
People qualify for the medical assistance program, also called Medicaid, through income guidelines, Mrs. Wall-Cote said.
And in cases involving autism, "the child's income is used (in applications for) Medicaid coverage," she said. "The parents' income is not looked at."