Investigating alternative treatments for autism
Trish Callahan & Trine Tsouderos, of the Chicago Tribune, won an Award for Excellence in Health Care Journalism for "Dubious Medicine," a look at the world of alternative treatments for autism, treatments that are often risky and unproven. At Health Journalism 2010, they shared how they reported the project and distributed this tip sheet for reporters.
By Trish Callahan & Trine Tsouderos, Chicago Tribune
Tens of thousands of children with autism are being subjected to mass, uncontrolled experiments every day. Alternative therapies for autism often go beyond harmless New Age folly. Our investigation found that many of these treatments are risky and unproven. The therapies often are based on scientific research that is flawed, preliminary or misconstrued. Laboratory tests used to justify therapies can be misleading and misinterpreted. And though some parents fervently believe their children have benefited we found a trail of disappointing results from the few clinical trials to evaluate the treatments.
Find doctors in your community
Many doctors who prescribe these treatments are part of the Defeat Autism Now! movement. For a state-by-state directory of health care providers who asked to be listed in the Defeat Autism Now! registry, go to http://www.autism.com/pro_providers.asp .
Keep in mind that this is not a comprehensive list. Some doctors who prescribe these treatments and train other physicians choose not to be in the directory. To be listed, doctors have to attend Defeat Autism Now! training sessions and agree to conduct their practice in accordance with the Defeat Autism Now! philosophy. Parents of children with autism call them "DAN doctors."
Defeat Autism Now! is a project of the non-profit Autism Research Institute, which promotes many alternative treatments for autism. The institute hosts Defeat Autism Now! conferences for parents and doctors:
Autism One, another nonprofit, hosts conferences for parents of children with autism. Doctors who promote alternative treatments speak to packed ballrooms.
Find experts, understand the ideas behind the treatments and learn how doctors justify the therapies
The U.S. Court of Claims Omnibus Autism Proceedings offer loads of helpful documents. This is a repository of documents in "test cases" in which special masters (like judges) evaluate the claims of parents who say that vaccines caused their children's autism. While alternative treatments for autism are not the subject of these proceedings. the special masters offer insight on junk science used to justify many alternative treatments and dissect the credentials of experts on both sides of the issue.
The special master decisions are a good place to start:
Background on the autism proceedings:
This is the docket:
The links above don't include testimony. Blogger Kathleen Seidel compiled testimony transcripts and sound files, as well as many other helpful sites. Parents, for instance, testify about what treatments their children received, and some of the doctors who prescribe these treatments describe what they do. The expert testimony and cross-examination also can be revealing:
Other places to look
Federal and state court records can offer valuable insight on doctors and medical practices that offer alternative treatments for autism. Ask yourself what agencies regulate the person or treatment you're investigating (state medical boards, FDA, etc.), and look for records with those agencies. If the doctor's practice has a non-profit arm. IRS 990 forms offer important financial details. You can find 990s at www.guidestar.org. If the doctor you're writing about does research, find the trials at www.clinicaltrials.gov or published studies at http://www.ncbi.nlm.nih.gov/pubmed.
If the doctor justifies the treatments using other scientists' research, read the supporting studies on PubMed and talk to the researchers. Are these studies peer reviewed? Do the researchers agree that their work supports the treatment in question? For instance, the head of Cambridge's Autism Research Centre said the fact that doctors were using his research to justify prescribing a powerful chemical castrator for autistic children, "fills me with horror." When neurologists at Johns Hopkins published their study on brain inflammation and autism, they said they warned practitioners – in all capital letters – NOT to prescribe anti-inflammatory medicines or intravenous imrnunoglobulin for children with autism. Yet health care providers have repeatedly used this study to justify the very treatments the scientists warned against.
- You can read the series at chicagotribune.com/autism.
- See the contest questionnaire in which the reporters write about how this story was written.