At a conference in March, I heard one perspective from a scientist who has a son with autism. Having spent her career searching for answers, she instinctively wanted to know as much as she could about her son. In a spectacular coincidence, she learned that her son has a mutation in the same gene she had studied for years. The findings didn’t guide treatment decisions, but she said knowing the origin of her son’s autism was hugely gratifying.
Another researcher, Thomas Bourgeron, once told me about a mother who learned years after her son was diagnosed with autism that he has a mutation known to cause a severe form of the disorder. Before getting this information, she had succeeded in teaching her son to talk, which is unusual for people with this mutation. Had she known this earlier, she told Bourgeron, “I would not have fought like this. I wouldn’t have thought I could fight the genome.”
As with the scientist I met, parents who have a child with a risk factor were relieved to have some understanding of the disorder's origins. One parent, for example, used the result to refute a teacher who believed her son was “just arrogant.” Another regretted having looked for easy solutions in alternative treatments: “I would have never considered doing half the stuff to [the] poor [child] that we did,” she said, citing chelation treatments, purported to rid a child of toxins.