Early autism screening urged, but barriers exist

Some physicians would like payment to reflect the extra case management involved in caring for children with the disorder.

By — Posted Nov. 19, 2007

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Doctors widely praised new guidelines that call for screening of all young patients for autism and for medical homes for children with this diagnosis. However, some physicians said financial realities and inadequate access to follow-up care could interfere with implementation.

The American Academy of Pediatrics issued the recommendations in two reports presented at its National Conference and Exhibition in San Francisco last month. The documents appear in the November Pediatrics.

The first paper calls for children who are not babbling, pointing and gesturing by their first birthday to be evaluated for autism. It recommends that all 18- and 24-month-olds be screened. Those who are suspected of having a problem should be referred immediately for more complete assessment and to early intervention services that exist in most communities.

"There's so much more available in terms of early treatment. There doesn't seem to be any benefit to the wait-and-see approach," said Paul Lipkin, MD, chair of the academy's Council on Children with Disabilities, which issued the report.

This is the latest move by medical societies to improve autism detection and get children with the disease access to services early, when intervention can make the most difference. The AAP first called for universal screening for developmental problems, including autism, in 2006. The new paper spells out in more detail how to evaluate patients with autism.

The American Medical Association also supports educating and enabling physicians to identify children with developmental delays, autism and other developmental disabilities.

The AAP would like doctors to do more than identify children with autism. The academy wants to make it more likely that they have access to primary care, in addition to the specialist services they may need, according to the second paper.

"All children need a medical home where services can be well coordinated. Children with autism and related disorders are not an exception to that," said Dr. Lipkin, who is also director of the Center for Development and Learning at the Kennedy Krieger Institute in Baltimore.

The report calls for physicians to give children with autism the same kind of preventive care provided to those without disabilities, while also addressing some of their added medical needs. For example, the family may require genetic counseling because siblings will be at higher risk for autism and other behavioral abnormalities. Children with pica or who constantly mouth objects need to have their lead levels monitored.

The document also advises doctors on helping parents sort through the complementary and alternative therapies that many turn to. The goal is to aid families in avoiding treatments that might cause harm and question those not supported by science.

"It's important for pediatricians to maintain open communication and continue to work with these families even if there is disagreement about treatment choices, " said Scott Myers, MD, a report co-author and neurodevelopmental pediatrician at the Janet Weis Children's Hospital in Danville, Pa. "At the same time, it's also important to critically evaluate the scientific evidence of effectiveness and risk of harm, and convey this information to the families, just as one should for treatment with medication and for nonmedical interventions."

Physicians applauded the reports for clarifying the early signs of autism along with the best practices for screening and management.

"It's an outstanding contribution," said Robert Burke, MD, a staff pediatrician at Hasbro Children's Hospital and assistant professor of pediatrics at Brown University in Providence, R.I. "Physicians are becoming more aware of autism but need both information and some guidance about how to proceed."

Payment and screening worries

But many doctors expressed concern about the significant barriers to making the recommendations a routine part of practice.

"We diagnose autism more than we used to. For that reason, developing a specific way to look for it is important," said Keith Dveirin, MD, a Tucson, Ariz., pediatrician. "But for the policy statement to be translated to reality, doctors have to get paid fairly to do it."

The AAP paper on detection cited the billing codes required to get reimbursed for this kind of screening, but physicians reported that many insurance companies attempt to bundle evaluation with payment for a well-child visit. Delivering services to an autistic child can take much more time than for other children.

"We need to be able to be paid for the extra time and extra case management services. This difficulty discourages many people from wanting to take care of these children," said Dr. Dveirin, who is president of AAP's Arizona chapter but was speaking on his own behalf.

How to screen is also a matter of debate. Several tools have been created, but there is little agreement on which one is best.

Recommended follow-up testing for a child suspected to have developmental challenges may not be accessible because of a lack of professionals to provide it. Anecdotal evidence suggests that some children can wait six months for a complete evaluation. There are also concerns about overburdening government-funded early intervention services.

"We still find, in many areas, delays and problems in getting further diagnostic testing and therapy," said Dr. Dveirin. "This is going to put pressure on the system. How is the system going to respond? How much funding is there? How many therapists are there?"

Many experts said the true value of the guidelines may be less in what they advise physicians to do and more in confirming that autism is a medical condition.

"These unequivocally say that autism is a neurodevelopmental, biologically-based condition," said William Schwab, MD, professor of family medicine at the University of Wisconsin, Madison. "It's not an educational condition or a psychiatric condition. It's just like epilepsy or cerebral palsy. We need optimal insurance coverage for this, just like any other medical condition in childhood."

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Autism red flags

The American Academy of Pediatrics is recommending that physicians screen patients at 18 and 24 months of age for autism. These behaviors also should trigger immediate evaluation:

  • No babbling, pointing or other gestures by 12 months
  • Not being able to speak single words by 16 months
  • No two-word spontaneous phrases by 24 months
  • Loss of language or social skills at any age

Source: Pediatrics, November

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Autism genetic data released

Genomes of thousands of individuals with autism -- as well as those of their relatives -- were published online last month by researchers at Johns Hopkins Medicine in Baltimore and the Autism Consortium in Boston. The raw data were uploaded to the Autism Genetic Resource Exchange Web site (link).

The information is being made available to scientists in hopes of making collaboration easier and speeding research into the disorder's hereditary underpinnings.

"Autism is a difficult enough genetic mystery for which we need all of the best minds and approaches to help unravel the role of genes in this neuropsychiatric illness," said Aravinda Chakravarti, PhD, director of the Center for Complex Disease Genomics at Johns Hopkins.

The Autism Consortium contributed 3,000 genomes, and the Johns Hopkins team collected 1,250. Candidate genes are expected to be identified within the next few months.

Researchers are following the pattern of the Human Genome Project, which periodically made data publicly available before publishing the full sequence.

"We're releasing the raw genotype data so that other qualified researchers can take a look at it even as we're still beginning our own analysis," said Mark Daly, PhD, a senior associate member of the Broad Institute of Massachusetts Institute of Technology and Harvard University, a Boston-based collaboration attempting to develop ways to apply to medicine the knowledge gleaned from the Human Genome Project. He is also a member of the Autism Consortium.

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External links

American Academy of Pediatrics on autism spectrum disorders (link)

Centers for Disease Control and Prevention on autism (link)

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