My Mouth Won't Say the Words

“I often wonder, what would a totally normal brain be like? It might be really boring.” Temple Grandin laughs when she says this. And while her joke works on several levels, the aim it takes at the very concept of “normal” may be its most effective. Grandin, of course, knows something about this concept, having called abnormal for most of her life. Whether or not she’s the “most accomplished and well-known adult with autism in the world,” she has long been a terrific liaison between these seemingly separate experiences, the normal and the not.

Grandin makes this much clear as one of the interviewees in A Mother’s Courage: Talking Back To Autism. Premiering on HBO to mark International Autism Awareness Day on 2 April (and re-airing after), Fridrik Thor Fridriksson’s documentary follows the efforts of Margret Dagmar Ericsdottir to understand her son’s autism. Keli’s diagnosis, Margret narrates (voiced by Kate Winslet), has changed the lives of all the family. “We don’t know how much he understands,” she says. “His communication is so limited.”

As she speaks, the film lays out an ominous horizon—quite literally, with stormy skies under the credits. Keli exhibits “common characteristics,” a series of title cards submits, including social and communication impairments and repetitive behaviors and narrow interests. Keli’s head rocks as he walks, his gaze is unfocused, and at last, he appears to wander along a foresty path, his figure shrinking into the back of the frame. “It’s an agonizing feeling,” Margret says, “Not to be able to hold your child when something’s wrong with them. Keli may never be self-reliant or express himself normally.”

And there’s that word again. It’s helpful that Grandin is one of the first people Margret seeks out, as she interviews a number of experts and parents of children with autism, hoping that the film itself may “give some help and understanding to others.” As Grandin describes the brain’s parts and the different ways connections can be made, she raises important questions regarding social expectations and political judgments, ever framed by needs to fit in and—this is key—be understood. But, Grandin observes, not all forms of communication are the same. An autistic person, she says, might not be to talk, “but can learn to read and can learn to type.”

This is something of a revelation for Margret, and shapes the film going forward. As she meets with parents who children whose characteristics are wide-ranging and who have learned a range of ways to communicate, you may be thinking of Grandin’s observation, that “People get so hung up on the social stuff, they forget the difficulties of sensory stuff,” that is, “normal” people who can filter sensory input don’t always appreciate the onslaught that troubles those without filters.

In order to express their experience, autistic individuals use a range of means. Some, like Clay Meulemen, can use language socially, yet still presents something of a “puzzle,” because not everything he says is clear to those around him. Other autistic kids, like Tito Mukhopadhyay, have learned to use a keyboard. He describes his autism as “total chaos,” and tries to screen out stimuli, “by covering his ears, focusing on an object near him, or avoiding eye contact.” His mother, Soma, rejected doctors’ early diagnoses that her son was “mentally retarded” and needed to be institutionalized. She developed a technique called the Rapid Prompting Method and has since founded the Halo Clinic.

Whatever methods so-called normal people find to communicate with autistics, the film shows that everyone must come to terms with their new future. As one father puts it, he and his wife now “accept that things were not gonna be as we thought they were,” and from there, “grasp the concept that you can’t fix it.” As they set off for a trip to the mall with their multiple autistic sons, Björk can be heard in the background (she and Sigur Rós contributed to the music soundtrack). This combination of sound and images—at once percussive, propulsive, and strangely lyrical—offers a window onto the family’s daily difficulties and adventures.

If some of the other scoring is less clever (most often, big boomy orchestrations lay on feelings of loneliness or confusion), A Mother’s Courage demonstrates repeatedly that communication—talking back—is crucial in living with autism, as it shapes every story told here. David Crowe remembers when his son Taylor, then only three, suddenly dropped his spoon and began to yell, ““My mouth won’t say the words! My mouth won’t say the words!” Panicked, David couldn’t understand what was happening any more than his child. “He’d been a perfectly normal child,” Crowe recalls, “And over the next six months, all of his language skills essentially evaporated. It is as if your child has been stolen from you.”

The narration stages this story as another one of opposites: “Taylor gradually withdrew into the world of autism.” But his father finds a way to traverse those seeming borders, to move through time. Now 27, he graduated college and has a job as an animator. He’s not “normal,” but he is excellent. As Grandin puts it, “If I could snap my fingers and not be autistic, would I? No.”