Actor Jim Carrey took to Twitter this week to draw attention to a long-time cause of his, campaigning for what he calls “greener” vaccines. He was trying to make some points about his opposition to the newly signed California law requiring vaccines for all children attending schools in the state, allowing only medical exemptions. In his attempt, Carrey unleashed a series of tweets with statements such as “A trillion dollars buys a lot of expert opinions. Will it buy you? TOXIN FREE VACCINES, A REASONABLE REQUEST!” along with images of distressed children.
As it turns out, one of those children was Alex Echols, whose family emphatically did not give Carrey permission to use the image of their son in his tweets about vaccines and weren’t too happy about his having done so.
Carrey appears to be among those who believe that vaccines cause autism. While scientific consensus is that vaccines are not associated with autism, Carrey is joined in his belief by Robert F. Kennedy Jr., and linked in his tweets to a promotional website of Kennedy’s touting a related documentary.
But Carrey’s efforts did more than draw attention to his belief that vaccines contain “neurotoxins” and cause autism, one of Alex’s diagnoses. Because of Carrey’s use of Alex’s image and the resulting story blowing up around it, he’s also inadvertently drawn attention to a genetic condition that has been confirmed as associated with autism: tuberous sclerosis.
[Disclosure: Because of my involvement in a “mom group” many years ago, I was briefly familiar with Alex and his mother at the time he was diagnosed.]
The condition gets its name from the potato (tuber)-like growths that develop in the brain, as visible on MRI, that eventually harden, or sclerose. It traces to two gene variants that result in the development of these benign growths in many tissues. ‘Benign’ references only the fact that they aren’t cancer—their effects are not benign, particularly in the central nervous system. While the effects can be mild, often the condition is associated with epilepsy, developmental delay, and … autism.
In fact, about a third to half of children who have tuberous sclerosis could also be diagnosed with autism. Each condition is associated with seizures, and there are hints that disrupted connections among brain regions might be responsible for both the seizures and the social communication deficits of autism.
It’s ironic that Jim Carrey, in his effort to argue a debunked link between vaccines and autism, accidentally drew attention to one of the few factors that have been strongly linked to autism. Some celebrities, however, such as Julianne Moore, were way ahead of the curve and have been working a little more deliberately to draw attention to tuberous sclerosis.
Some people on Twitter have suggested that Carrey could make amends for his co-opting of Alex’s image by donating to the Tuberous Sclerosis Alliance. It would certainly be one way to apologize for using the image of a distressed boy without his or his family’s permission.