Over the past ten days, I went back to read a book that had been recommended many times but I hadn’t until now: Clara Parks’ The Siege.
Her book is a parent memoir, but in a class by itself. If I had read her book when Sam was first diagnosed, many pages would have been dog-eared and worn for her wisdom. Parks was an English teacher at Williams College and had her master of fine arts degree. In other words, she knew the value of keeping a daily journal, and thinking critically about what was happening in her family, and applying what she knew about language — and how it was different for her daughter, Jessy (Elly in the book’s first edition) than her other, older children.
I was struck by how many experiences we had in common. Both Sam and Jessy proved their intelligence in unusual ways, which required their families to pay attention. They both kept elaborate maps in their head that allowed them to return to a place even if they’d only been there once.
Both Sam and Jessy also had distressing episodes with vomiting.
And I will digress at this moment to say that researchers have been far too slow to try to understand this problem. Many, many parents report their young children with autism have distressing digestive problems. Parks wrote about her daughter’s in 1967; it’s not like researchers can say they were surprised. Parks gave the problem enough ink that the skeptical reader knew her own theory about the mystery was just that. But, as far as I can tell, it wasn’t until Andrew Wakefield’s disgraceful paper in The Lancet that funders and scientists got serious about understanding digestive problems that children with autism have. Besides faking his numbers to gin up the vaccine connection, Wakefield went into that vacuum of knowledge about autism and digestive problems to give his idea that same sticky quality you find in urban legends.
A publisher once told me that he gets pitched a lot of parent memoirs. He doesn’t publish them any more. They don’t sell. That’s sad. It’s not that Parks’ memoir is the be-all-end-all (although I suspect that if I’d read her book as a young mother, I would have been too intimidated to write one of my own.) But I don’t think we’ve even begun to scratch the surface about what parents have observed, and what that might mean for furthering scientific understanding.
For example, Parks’ observations about language were stunning. Speech pathologists likely understand more about language development in children with autism than they did in 1967, but there’s just too much thoughtful description in her book for me to believe that they’ve got it all.
It’s true that it doesn’t have to be a memoir. Maybe there’s another way to capture all those stories and wisdom to make it better for the next generation of parents and children.