A federal committee remade by Health Secretary Robert F. Kennedy Jr. recommended on April 28 that health agencies revamp guidance for diagnosing and treating people with autism spectrum disorder.
The Interagency Autism Coordinating Committee voted to advise the Department of Health and Human Services (HHS) to make clear to doctors that they should be prepared to recognize and treat new issues that crop up in autistic people, such as seizures and difficulty sleeping; develop standardized clinical steps when encountering conditions such as developmental regression and allergic disease when screening, diagnosing, and treating children with autism; and formally define profound autism as having little or no ability to speak and require continuous supervision.
The committee also said the government should take steps to enhance a warning system for missing and endangered people so that when autistic people wander away, alerts are issued.
The HHS did not immediately respond to a request for comment.
None of the recommendations involve vaccines, although some public speakers and panel members said they either think vaccines can cause autism or that research should be conducted into the possibility.
One recommendation is that Centers for Medicare and Medicaid Services, an HHS component, should clarify that when screening, diagnosing, and treating children with autism, doctors should seriously evaluate conditions such as developmental regression and allergic disease.
“When such triggers are present, further evaluation should be pursued or arranged as clinically indicated,” the committee said, adding that the evaluation “should not permit these signals to be dismissed solely on the basis of an autism diagnosis.”
The committee said that there is much clinical evidence describing medical conditions that occur among autistic people, but “this evidence is not consistently integrated into clinical assessment, resulting in gaps in recognition, evaluation, and follow-through, especially when these conditions present atypically.”
It added later: “The result has been delayed identification, fragmented care, and preventable morbidity—reflecting a translational gap rather than an absence of evidence.”
Another is that the Health Resources and Services Administration, which is also part of the department, should develop training for doctors to identify and address gastrointestinal changes and sleep disturbances, among other problems, in autistic people.
The committee said that despite evidence showing new symptoms require treatment, “clinical care remains inconsistent and fragmented across settings.” The symptoms “can be overlooked, deferred, treated as secondary to behavior, or not systematically elicited at all,” it said.
Among the specific recommended changes is treating observations from caregivers of autistic people who are unable to speak, or speak well, as medically relevant information, rather than anecdotal context.
Dr. Sylvia Fogel, a psychiatry instructor at Harvard Medical School and the committee’s chair, said during the meeting that focusing on treating autistic individuals is imperative, because many continue to suffer from undiagnosed psychiatric and pain-causing conditions.
“It is unacceptable,” said Fogel, who said her son has what she described as profound autism.
The committee also recommended that officials adopt the term profound autism as a reference for autistic people “with the highest and most persistent support needs.”
