A new memoir reveals a hidden world where inclusion doesn’t apply
Book Review:
Girl Storm, by Peg Kerswell
Middle Child Press, 2023
$14.99 paperback, 288 pages
By Jill Escher
In the mood to read an uplifting book about autism? Where a child miraculously learns to talk, graduate college, and then find her neurodiverse place in an inclusive world? If that’s your goal then please bypass Girl Storm, the cliche-free new memoir by Peg Kerswell, a New Jersey mom who shares her true story from the darkest corner of severe autism.
There are no autism superpowers dished out here, but plenty of dysfunction and despair. There is flailing and screaming, broken noses, headbutting, and the pungent odor of urine-soaked adult diapers. There are ruined vacations, emptying bank accounts, and a penetrating, soul-destroying exhaustion. A parallel universe of chaos where even the slightest bit of normalcy seems decadent.
But in Girl Storm you’ll also find something unexpected. The story is suffused with a quirky humor, whiplashing the reader between laugh-out-loud funny and verge-of-suicide despondence. The book is spiky, raw, unfiltered reality, but with the touches of someone who retains just enough bemusement to (sometimes) laugh at the absurdity of it all.
For example, the author employs an inventive vocabulary that severe autism parents will immediately grasp. The ”shitcidents,” which need no explanation. How, after you find yourself increasingly imprisoned in your home, serving as a “carebot” disconnected from “The Outside” of the larger world where the “typpie houses” with “typpie children” are blissfully unaware of the havoc just down the street. How at the end of a day doing 1,000 extra things beyond what any normal parent would ever need to deal with, you mix a “respitini” drink to take the edge off.
We meet the author’s only child, Ellie, as a placid infant with ears that poke out a bit. At two and a half, the tantrums start; the toddler is unsettled, restless crying, and at age three comes the blow of an autism diagnosis, followed by the added joy of seizures. At three years old Ellie is still in a stroller, flicking her plastic baby keys. She screams so often that Peg’s husband Jim, an audio engineer, suffers some hearing loss, while the daily demands of care leave Peg a disshelved mess in sweats.
The book is rich with heart-stabbing moments I knew all too well. Peg clears out all the toys that never engaged her child, including the plastic stacking ring toy, the “simplest of cognitive tasks” her teen daughter could never achieve. She throws out all the files on disability programs that won’t accept her kid. A fellow autism mom lifts her shirt to reveal all the bruises. Meeting any of Peg’s own needs, even grabbing a glass of water, requires a strategy with military timing and precision. She has developed “bionic special needs parent peripheral vision” that keeps her on the lookout for the next inevitable crisis.
Given the outstanding quality of the writing, it’s something of a marvel that the author did not have a history as a writer; instead she was a musician who put out two albums under the name Margaret Far. On the surface Girl Storm is pure personal story-telling, Peg is solely concerned with the well-being of her daughter. It doesn’t preach or detour into history, politics, or autism-community controveries. But one cannot help but notice that nearly every scene quietly raises urgent questions about our autism world today.
Why? What caused this autism? Like the vast majority of kids with autism, Ellie has no genetic diagnosis or other explanation for her serious mental disorder. The lack of a “why” haunts Peg and countless other autism parents, who engage in self-blame and dark ruminations.
We also can’t help but see the absurdity of school for children like Ellie. School is babysitting, with data, a costly charade where little to no progress is made. In a more rational system, “education” would be shelved as a next step only to be taken after an immersion in a comprehensive program that prioritizes clinical care to improve basic functioning and behaviors. After a long cycle of ferocious self-injury, Ellie is lucky to enter the “tiny disability cloud wormhole” of such a program, but this approach should have been Job One, not an afterthought. This program finally gives the author the respite Peg and Jim so desperately needed, a relief from the “Bermuda Triangle” of special needs parenting where those with challenging behaviors are erased and forgotten.
Compared to the sharpness of the rest of the book, the end felt a bit bland and creaky. But the reader knows the story of Peg, Jim and Ellie is just beginning, and hopes and prays for a sunnier future for the beseiged family — for improvements in Ellie’s condition and for a broken system to provide all the therapies and services that are so obviously needed.
Girl Storm is one of the best autism parent memoirs I’ve read. It should be on the reading list of anybody who has a sincere interest in the realities of autism, and not just the cute-and-quirky stuff we see dominating in the media. Autism parents and caregivers will be grateful for the book’s journey deep inside the mind of a profound autism parent, complete with the scene-setting detail and idiosyncratic humor. Book clubs will delight in the fresh prose. It is a gift to the cause of authentic autism awareness.
Jill Escher is president of the National Council on Severe Autism.