Too few treatments prescribed for children with autism are backed by concrete scientific evidence despite a range of drug, behavioral and alternative therapies being routinely offered -- and sometimes at enormous cost, a trio of new reports concluded Monday.
Medical investigators, reporting in the journal Pediatrics, assessed a wide gamut of treatments from medication therapies to behavioral interventions and found an absence of scientific data to support much of what is available for children with an autism spectrum disorder.
Funded by the Agency for Healthcare Research and Quality, the lead federal authority charged with improving the quality, safety and effectiveness of medical care, the analyses opened a surprising new window into how sparse research has been for a condition that affects an estimated 1 in every 91 children in the United States.
"This is the first time the medical community has come out with research that I agree with," said Evelyn Ain, co-founder of Autism United, a Long Island advocacy organization and publisher of Hicksville-based Spectrum magazine, which is devoted to autism-related issues.
She said medical experts need to seriously study the treatments offered to children -- many with high price tags and some with dangerous side effects.
"Some parents are spending $1,000 a month or more on treatments and there is no evidence that any of it works," said Ain, whose son has been diagnosed with an autism spectrum disorder. She blames doctors who charge high fees, take cash payments only and push a number of untested products, claiming they address autism.
Distinctly different conditions fall under the autism rubric, but all affect how information is processed in the brain.
In one of the three papers, investigators found no evidence to support prescribing drug therapy for autism, especially stimulants and anti-depressants. Although the use of anti-psychotic medications has helped treat hyperactivity and other behavioral concerns, the drugs carry major drawbacks, doctors concluded.
"Medication therapy is not the backbone of treatment," said Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at Cohen Children's Medical Center in New Hyde Park, who was not connected with the research.
Authors of the paper on medication therapy noted that even though many children diagnosed with autism are treated with drugs, "strikingly little evidence exists to support clear benefit for most medications."
The second paper focused on behavioral treatments and evaluated 34 studies on interventions. The conclusion: Not one of the behavioral methods could be unequivocally recommended.
The third study involved a drug called secretin, a protein once used to treat ulcers. Parents once paid "black market" rates, Adesman said. But the drug, according to the study, is useless.