In a long interview with Time, Jenny McCarthy says of parents of autistic kids, "Hope is the only thing that will get us up in the morning." But is the kind of hope she's offering actually dangerous?
Time's Karl Taro Greenfeld gives a more nuanced portrayal of McCarthy than the the usual love-her-or-hate-her coverage. From her difficult years in Catholic school ("I was blond, cute, broke. I was beat up.") to her dogged commitment to helping her son, McCarthy comes off as a tough woman who has found a mission she's passionate about. This mission, says Greenfeld, has softened in recent years — though she once "decried what she claimed was a vast, profitable conspiracy to vaccinate children" she now says vaccination should be scaled back rather than eliminated. Still, McCarthy's claim that she used a variety of alternative treatments to "recover" her son Evan from autism brought on by an MMR shot isn't supported by science, and some say she does more harm than good.
There are dark murmurings from scientists and doctors asking, Was her son ever really autistic? Evan's symptoms - heavy seizures, followed by marked improvement once the seizures were brought under control - are similar to those of Landau-Kleffner syndrome, a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage. Or, as other pediatricians have suggested, perhaps the miracle I have beheld is the quotidian miracle of childhood development: a delayed 2-year-old catching up by the time he is 7, a commonplace, routine occurrence, nothing more surprising than a short boy growing tall.
McCarthy's response: "she held him during his seizures, saw his eyes roll up after he received his vaccines - and how can you say that she doesn't know what she knows?" What makes McCarthy so polarizing is that she embodies the conflict between subjective experience and authority. Her position can be maddening — Greenfeld points out that measles and meningitis are on the rise as parents refuse immunizations. But it's also true that for autistic kids, the current science falls short — the behavior therapy supported by clinical trials results in recovery for only about 10% of kids. Autism experts can feel like outsiders to struggling families, and their message is a gloomy one — it's no wonder that parents turn to someone who seems both more like them and more upbeat.
Infectious disease specialist and Autism's False Prophets author Paul Offit says, "I think false hope is worse than no hope." And beyond the obvious dangers of falling vaccination rates, there's a risk that parents will waste hard-earned money on useless treatments, or stress the minds and bodies of kids who would be better off with acceptance. But to undervalue hope seems, for all Offit's good intentions, like an outsider's mistake. Greenfeld writes movingly of his own parents, who are still looking for the treatment that will help his 42-year-old autistic brother. And indeed, a recent study showed that "a combination of warmth, responsiveness to the child's needs, respect for his or her emerging independence, positive regard for the child, and maternal structuring, which refers to the way in which a mother engages and teaches her child in a sensitive manner" may improve language skills in autistic kids. This combination of warmth, responsiveness, and respect may be easier to muster if the parent has some hope that the child will improve. And hope may be necessary for a parent's well-being as well — for parents like Greenfeld's, who care for autistic sons and daughters well into adulthood, a glimmer of optimism may be a necessary bulwark against despair.
The enduring popularity of McCarthy and her message may highlight a need for pediatricians and autism experts to better understand the emotional needs of families. Stopping vaccines clearly isn't the answer, but clinicians need to regain parents' trust — and to do so, they must recognize that doing something for a child, even if it's not supported by science, may feel better than doing nothing. This is not to say that medical professionals should overstate the effectiveness of unproven treatments — rather, they should accept parents' desire to keep hope alive and endeavor to balance this with the available science. Until they can do this, they'll always have to battle Jenny McCarthy — who, for all her faults, understands what parents are going through.