A Terrifying World

Under siege

Somewhere out there in the world, there is a child, a girl this time. For simplicity’s sake, let’s say this child lives in the United States, in a lower middle class suburban home in Michigan, though she could just as easily be a boy in Beverly Hills or South Korea or the desert of Afghanistan, or twins in the slums of Rio. Nothing outwardly marks her as different, except that she never looks even her own parents in the eye. The world terrifies this child. “That’s what’s wrong with me,” the child might say if she could talk, but she can’t. Let’s call her Jackie Tanner.

The world attacks Jackie. The buzzing of the fluorescent lights over the bathroom mirror drills into her ears. When the new baby cries, it hurts, hurts, hurts… The Christmas sweater her grandmother made her bites and scratches her skin, so she fights to get out of it. Life for Jackie is life under siege by her own senses.

Jackie has autism. She is only a hypothetical case, but there are thousands of girls out there like her, and for every girl, there are five boys (“Facts about Autism”) who go through their own personalized version of life in a distorted world. Much has been researched and written about how people with autism think, but we’ll stick with the basics. A child has to experience the world before he can learn to think, and experience of the world comes first through the unfiltered senses. In some children with autism, normal sensory function becomes too much or too little, and the child is hyper- or hyposensitive to specific stimuli; he might even fluctuate between the two (Harrison and Hare, 727). Hypersensitivity gains more attention because of the acute reactions it triggers, but hyposensitivity brings its own set of problems. When a small child is hyposensitive to pain (Harrison and Hare, 728), his or her only natural defense mechanism against injury has broken down.

The cause of hypersensitivity—and hyposensitivity—is not clear, but genetics and the structure of the brain appear to play a part. Studies of a gene suspected to contribute to autism have resulted in abnormal amplification of hearing in mice when that gene was disabled. The loss of this gene also caused an increase in neuronal connections in the brains of the mice (“Gene Mutation”), corroborating with theories that the brains of those with autism are simply too connected. Is Jackie caught in a clash between overstimulated senses she can’t filter? That isn’t certain, but the effect is. Temple Grandin, an autistic woman with a PhD famous for designing more humane slaughterhouses, experienced problems tuning out background noise as a child and continues to struggle with it well into adulthood (Grandin). When Jackie is in her room, even distant sounds slice right through the walls to reach her (“The Sensory World of Autism”): her mother singing to the baby, her parents arguing about money and about her.

Yesterday Jackie’s father was giving her a bath—the humming lights boring into her ears even over the calming music that played from the bath time iPod—when her mother came in carrying the new baby. He began to cry, and Jackie’s head exploded from the pain. She covered her ears and thrashed back and forth until her father locked her against his chest. At times like this, the sensory siege breaks down into a route, triggering what most parents call a meltdown.

Meltdowns cover a wide range of behaviors, from a response to sensory overload to extreme demonstrations of anger and frustration (du Beke). Even a single child may react in an overwhelming variety of destructive ways, as mother Liz Becker describes the behavior of her young nonverbal son: “crying, screaming, hitting, biting, or my all time favorite – the full-body lock down. Child proof locks on cabinets didn’t prevent him from opening the cabinet door under the kitchen sink and the latch on the back door didn’t prevent him from escaping to the yard, then to the road and down to the creek.” Similar losses of control—thrashing when her senses are overstimulated, and screaming when she doesn’t get lunch right at noon—punctuate life in Jackie’s home, no matter how much her parents try to prevent them. Strangers castigate the Tanners in public for not controlling their daughter’s “temper tantrums,” without knowing that meltdowns are a complete loss of control (“Meltdown”) rather than willful bad behavior. Children like Jackie have no other way of expressing their pain and frustration.

Many children with autism speak, and some never stop talking. Not Jackie. She says only ten words, and she is four years old. As many as one in four autistic children are nonverbal, with little to no spoken communication (“NIDCD Factsheet”). Their parents and caretakers often cannot be sure how much they understand. At a summer barbecue, Jackie’s neighbor calls her a retard when she’s sitting on a bench directly in his line of vision. Jackie can understand almost everything that is said around her. With any silent autistic child, it is a mistake to presume that what he hears has no meaning for him. Grandin, who struggled with spoken language herself as a child, recalls how effortful her speech was, “like a big stutter.” Indeed, lack of motor coordination may play a role in minimally verbal children (DeWeerdt). This lack of an ability to communicate only increases the child’s frustration and desperation, which feed the meltdowns, which in turn leach the energy and optimism from the entire family. Life seems a never-ending losing battle, not just for Jackie’s parents, and eventually her little brother, but for her. The problems may revolve around her, but she is the one trapped within her warping senses.

Little girl lost?

As heartbreaking as the trials of a young child with autism are, help is available that clears away some of the battle debris and releases the Tanners at least a little from Jackie’s isolation. For the past year, Jackie has been able to communicate basic wants and needs to her parents through picture cards (Lewis). Soon she will be able to say even more through one of the many apps that are available for those with nonverbal autism; the range of options, from picture based to responsive to typing, from producing a natural-sounding age-appropriate voice to word prediction capability, ensure that one or more will be a good fit at every stage of her development (Stansbury). Other apps that provide structured organizers or practice social situations will help arm her against other demons of autism, anxiety and social isolation, further down the road.

Meanwhile, the fight against her hypersensitivity and lack of spoken language continues. Carefully structured and controlled systematic desensitization helps Jackie learn to tolerate the sounds that now seem so overwhelming (Stiegler and Davis). A therapist gradually exposes Jackie to the sound of a crying baby, moving from behind a closed door to on the far side of the room to, eventually, several feet from her. With the presentation of rewards for tolerating the sound, Jackie slowly comes to desire the prize more than she fears the reedy cry of an infant. Specialized music therapy greatly increase Jackie’s ability to approximate word sounds (Wan et al.) by taking advantage of the intense positive response she has to melodic sounds. With these and other interventions, Jackie can slowly discover how to reach through the fractured lens of her senses and touch the wider world.

Explore sensory differences further through the National Autistic Society of the U.K.

Works Cited

Becker, Liz. “Autism and Meltdowns—In Search of the Trigger.” Autism Support Network. OLIM, LLC., n.d. Web. 18 Oct. 2013.

DeWeerdt, Sarah. “Study of Nonverbal Autism Must Go Beyond Words, Experts Say.” Simons Foundation Autism Research Initiative. Simons Foundation, 2 Sept. 2013. Web. 19 Oct. 2013.

Du Beke, Anton. “Understanding Meltdowns.” ASD Friendly. ASD Friendly, 14 Dec. 2012. Web. 18 Oct. 2013.

“Facts about Autism.” Autism Speaks. Autism Speaks, Inc., n.d. Web. 14 Oct. 2013.

“Gene Mutation in Autism Found to Cause Hyperconnectivity in Brain’s Hearing Center.” Science Daily. ScienceDaily, 13 Jan. 2012. Web. 25 Oct. 2013.

“Girl with Autism.” Photograph. Sfari. Simons Foundation, 2011. Web. 5 Nov. 2013.

Grandin, Temple. “An Inside View of Autism.” Indiana Institute on Disability and Community. Indiana University, n.d. Web. 15 Oct. 2013.

Harrison, James, and Dougal Julian Hare. “Brief Report: Assessment of Sensory Abnormalities in People with Autistic Spectrum Disorders.” Journal of Autism and Developmental Disorders 34.6 (2004): 727-730. Web. 15 Oct. 2013.

Lewis, Tanya. “Pictures Better than Sign Language for Communicating with Kids with Autism.” LiveScience. TechMedia Network, 25 Apr. 2013. Web. 21 Oct. 2013.

“Meltdown.” Merriam-Webster. 2013. Web. 19 Oct. 2013.

“NIDCD Factsheet: Communication Problems in Children with Autism.” University of Massachusetts Medical School. University of Massachusetts, n.d. Web. 15 Oct. 2013.

“Sensory Overload.” Photograph. Indiegogo. Indiegogo, n.d. Web. 31 Oct. 2013.

“The Sensory World of Autism.” The National Autistic Society. The National Autistic Society, 2013. Web. 21 Oct. 2013.

Stansbury, Meris. “Twenty-Seven Visual, Sensory, and Augmentative Apps for Autism.” eSchool News. eSchool News, 14 June 2013. Web 28 Oct. 2013.

Stiegler, Lillian, and Rebecca Davis. “Managing Sound Sensitivity in Individuals with ASDs.” ASHA. American Speech-Language-Hearing Association, 18 Jan. 2011. Web. 21 Oct. 2013.

Wan, Catherine Y., Loes Bazen, Rebecca Baars, Amanda Libenson, Lauryn Zipze, Jennifer Zuk, Andrea Norton, and Gottfried Schlaug. “Auditory Motor-Mapping Training as an Intervention to Facilitate Speech Output in Non-Verbal Children with Autism: A Proof of Concept Study.” PLoS ONE 6.9 (2011): n. pag. Web. 21 Oct. 2013.