Facts are stubborn things, but study after study and warning after warning doesn't kill the intense fear that many parents have about vaccinating their children. My son, Tariq, received the MMR vaccine (Measles, Mumps, Rubella) in 1981 around the same time that he lost his speech and started flapping. From my experience since then, I have gained insight into ‘the vaccine issue’ that makes it at least understandable and may help to even do something about it.
Generally the first signs or “Red Flags” of autism, that my son began to show as a toddler, appear in the second year of life often around 18 months when the measles vaccine is routinely given. Herein lays the connection which some parents and professionals were making by the mid-1980s. Some were convinced that the vaccine was the cause or the smoking gun.
Autism has no singular cause and no known cure. Not every individual with autism is disabled, but many are. Not every diagnosis is a trauma or tragedy, but many are. While every child is a unique and special human being with gifts as well as challenges, the unemployment rate for adults with autism hovers between 70 and 80%. As parents we want to have a cause for the problem. With a cause we can have the hope that a cure is possible.
In 1998, Dr. Andrew Wakefield published a study in a prestigious British medical journal, The Lancet, which proposed a causal link between the MMR vaccination and autism. Even though most of Wakefield’s co-authors wrote a retraction and disagreed with the conclusion, parent activists, including high profile celebrities, were especially alarmed about the idea that the MMR vaccine caused autism. There was a perfect storm as the number of children diagnosed with autism was increasing rapidly due to several factors including increased awareness and changes in diagnostic criteria.
Besides the discredited research, several large studies found no evidence of a causal relationship between the MMR and autism. In 2010, The Lancet retracted the 1998 article because it was based on fraudulent data, and Wakefield’s medical license was revoked in the UK. But the parent community remained terrified that their children could be infected with autism through vaccinations. Some parents felt certain and signed onto litigation against the pharmaceutical companies that made the vaccine. Vaccines do have documented but rare side effects, and a small number of parents won their cases.
So why does the controversy continue?
When professionals and politicians merely recite facts and do not show an understanding or respect for the legitimate fears and needs of parents we cannot expect this controversy to go away. From my own scientific training, I knew that the timing did not prove causation. Like others, when my son changed at 18 months, I wondered about the causal link between autism and the vaccination. As a social scientist however I was not convinced and read the scientific research with great interest. Still, I lived in fear that lightening could strike twice as it actually has for many parents.
I have a view from the trenches of autism, and I feel the pulse of the parent community. Most of us love our children as much as life itself. Tariq, now 35, does not speak, or read, or write, and he lives in a group home outside Philadelphia. It has not been an easy journey, but I don’t look back to his vaccinations.
As I have found through my work, compassion for parents’ point of view and honoring their perspective helps terrified parents to think through their options and make better informed choices. All of which still amounts to taking a chance at your best future. There are no guarantees. Everyone wants to welcome a happy, healthy child with a bright future into their family. The outcome of any birth, and any day for that matter, remains uncertain– not just because of autism but because of any of life’s unpredictable events.