Supporting Real Autism Science

The fight about Wakefield is a fight about the past. And that fight has actually hurt scientific research that could eventually help many autistic people. It's time to move on.
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Suppose you have the flu. You also have diabetes. Would you expect that being treated for the flu would cure your diabetes?

Of course not. And yet for many years, parents of autistic children who also have gastrointestinal disorders (GID) hoped that treating their children's GI problems would cure their autism. This hope was largely based on the work of Andrew Wakefield.

As Susan Dominus recounts in her New York Times Magazine profile of Wakefield, the British doctor theorized that the measles virus contained in the measles-mumps-rubella vaccine (MMR) could "infiltrate the intestines; certain proteins, escaping from the intestines, could then reach and harm neurons in the brain." This MMR and "leaky gut" theory proved incredibly seductive because it suggested both a possible cause and a possible cure for autism. Treat the GI problem, went the thinking, and the autism might go away.

But wakefield's theory has it been refuted by many studies, and it also has been revealed to be fraudulent. As a result, Britain's General Medical Council revoked Wakefield's medical license.

According to Dominus, many parents love Wakefield because he listened to their concerns about their children's GID. But because his work is tainted, mainstream scientists have tended to dismiss parents' concerns as being associated with quackery and vaccine fears.

Now let's go back to our diabetic flu patient. We can't cure his diabetes by treating the flu, but we'll certainly make him feel better. And when he feels better, he'll have an easier time handling the challenges of his diabetes. Might something similar be true for autism and GID--that a child whose digestion feels better might still have autism, but exhibit fewer disabling autistic behaviors?

One scientist who thinks so is Pat Levitt, a neuroscientist and the Director of the Zilkha Neurogenetic Institute at the University of Southern California. As Dominus reports, Levitt has studied autistic children both with and without GID. He has discovered a gene variant that is more common in children with both autism and GID than it is in children who only have autism. I interviewed Levitt by email to find out more about his work.

While Levitt continues to study how the gene variant functions in mice, he has been working to produce "a deep clinical characterization of children with ASD and GID, comparing traits with children who have ASD only or GID only." Because his work is still being considered for publication, Levitt can't speak about the data, but he believes that "families with children who have both ASD and GID will find the new information to be very important."

Levitt certainly does not believe that his work will lead to a cure for autism, but he asks, "How can we expect a child to be fully compliant or amenable to ASD-specific interventions if no one is dealing with their GID pain and control issues? Treating effectively GID will have a positive impact on the effectiveness of interventions that a child is experiencing."

What more could the parent of an autistic child with GID want from scientific research? A scientist at a major research institution is conducting research in response to one of the most frequent parent concerns about autistic children.

But there's a catch, at least if you're a parent who continues to believe in the MMR vaccine causation theory of autism. When I asked Levitt if we should continue to investigate vaccines as a cause of autism, he said, "no." He clarified further, "Vaccines can negatively impact, in rare instances, the health of a child," but "it is rare and does not explain the common prevalence of the spectrum disorder."

Levitt also believes that the long controversy over Wakefield's work set back scientific research. As he puts it, "Tens of millions of dollars were spent on studies to address leaky gut and MMR causing autism." More significantly, "every time another well-done study was able to dismiss the Wakefield idea, GI in autism was dismissed--guilt by association, I suppose."

There are still people--including Wakefield--who believe that Wakefield's research was valid and that he is innocent of the charges against him. I think they are mistaken. But one thing that should be clear to all of us is that Wakefield's career in scientific research is almost certainly over. What legitimate research institution would take the risk of being associated with him and all the baggage he brings with him?

The fight about Wakefield is a fight about the past. And as Levitt makes clear, that fight has actually hurt scientific research that could eventually help many autistic people. It's time to move on. As Levitt says, "I have no axe to grind or agenda to fulfill. Some people are surprised that a neuroscientist is taking on GID in ASD, but I think it is about doing sound biology research."

Sound research may not lead to the "cure" for autism that many parents have hoped for and that Wakefield's work once seemed to suggest was possible. But a cure is not what's needed. I support research that will help improve the medical conditions of autistic people and help them to lead better lives--as autistic people. Who's with me?