One Family’s Journey With Autism: What Is It Like Having An Autistic Family Member?

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child with autism linda and martin smith

In the Lake Spivey country club, the Smith family’s home sits nestled between houses of similar stature. The lawns are all perfectly manicured and the cars gleam in the driveway. Except on this home, there is a sign that reads, “In case of emergency, occupant with autism may: run away, not respond, resist help.”

Inside, shrieks and thumping are coming from upstairs as the family’s two boys are at play. Lindsey, 10, is rewinding a Hannah Montana video. His brother, Alexander, 5, is playing out what he wants to be when he grows up. He starts, “I can be a fireman….or, no, wait, a policeman! Yeah! I’m gonna be a policeman!” He bounces from foot to foot as he jabbers on.

The shrieking stops as Lindsey wanders downstairs. He clutches a Jojo the Clown doll to his chest and tiptoes around the chatting adults. He makes no eye contact with anyone.

The boys’ parents, Linda and Martin Smith, do not like to think of asking Lindsey what he wants to be when he grows up. For two reasons: They try not to think about the future and Lindsey cannot speak. Lindsey has autism.

Imagine summer camp at the YMCA. Kids paddling in canoes, spraying on bug repellant and chatting about late-night escapades. At least one, if not more, of those kids has autism.

Now imagine the size of any small town in Connecticut. That’s how many new cases of autism are reported each year.

The diagnosis for autism is based on behavior. There is no blood test for it. No urinalysis. Just an observation of a child’s activities and mannerisms.

The symptoms of autism fall into a veritable spectrum of behaviors.

On one hand, a child with autism might just seem socially awkward.

They might have trouble making direct eye contact with strangers, or they become introverted in social situations. On the other hand, they might be mentally challenged and dependant on someone to care for them and help them do everything.

There is no known cause and there is no known cure. Only hope.

Treating a child with autism is based on the family’s wishes and where on the spectrum the child falls.

Lindsey has low-functioning autism. His comprehension level is questionable because his communication is minimal. “I definitely think he understands more than he can show,” his mother said with confidence.

Lindsey’s treatment includes Applied Behavior Analysis, which teaches good behaviors and deters his bad behaviors. Lindsey’s good behaviors: direct eye contact and responding when his name is called. His bad behaviors: sensory stimulation of sensitive body parts, like putting his fingers into his mouth or pants.

Together, Linda and Martin Smith live for Lindsey, waiting for his direction so they can follow along.

He dictates when they eat by taking their hands and leading them to the food when he is hungry.

He dictates when they sleep by deciding when to stop shrieking at night and when to begin again.

Lindsey’s schedule controls the Smiths’ day, and until recently even the drive to school was an ordeal.

Lindsey’s sensitivity to sensory stimuli made a daily drive feel like he was hurtling through space.

Unable to withstand the pressure, Lindsey howled in pain every time the car moved.

Only recently was he able to grow past this pain. Even so, a mere pat on the wrong part of his body and he bawls.

Lindsey’s limitations even direct the way the house looks, right down to decor. Upstairs, the landing reveals boxes overflowing with Martin’s books, two computers, one with a touch-screen monitor specifically for Lindsey, and two bedroom doors, one with a lock on the outside. Lindsey’s room is the one with the lock.

Lindsey’s lair consists of a bunk bed surrounded by mattresses. There is no bare floor. The mattresses line the ground to tire him out as he bounces his energy off. His dresser sits anchored to the wall, warped from years of Lindsey’s climbing.

Drawers litter the floor. They no longer fit into the deformed dresser. Clothes spill out from each drawer, creating the illusion of new homeowners moving in. Posters do not adorn the walls. Lindsey’s habit of trying to climb walls keeps the Smiths from decorating his room.

“When he grows up I don’t know,” Linda said, her voice breaking and tears welling in her eyes. “I do want him to regain his speech,” she said, turning to look out the window. Fire colored leaves seem to fall from the sky as the wind sweeps them off their branches. Linda sighs and turns her attention back to Lindsey. She takes the piece of meat out of his hand and stabs it with a fork before handing it back to him.

Between the ages of 3 and 5 years old Lindsey spoke in echolalia, which meant he parroted back what people said to him while interjecting his own thoughts. “I used to sing him a song from Disney’s Tarzan movie,” Linda said.

She glanced at Lindsey who stuck his fingers in his mouth as though expecting a different flavor from each one.

“I would sing him the song and he would say, ‘you’ll be in my heart, mommy,’” Linda said, tears falling down her face and onto her chin. She took no notice but looked at Lindsey, her eyes full of love and tears. Lindsey’s blue eyes gazed back, seemingly unaware of his mother’s sadness. After a moment’s silence she smiled and rubbed her face the way a child rubs away mistakes on their homework.

Lindsey scoots around the house, seemingly unaware of his parents’ presence. He does not engage in the usual roughhousing that brothers share. He works alone.

Lindsey, seemingly bored by the kitchen, clambers back upstairs to the computer.

After a few swift jabs at the monitor, Hannah Montana reappeared on the computer screen and Lindsey’s shrieks of joy began again. Alexander climbed onto the tire swing and began jabbering about cartoons.

The children’s sounds filled the Smiths’ home, and for the moment, theirs was like every other manicured home on the block.

 

One Family’s Journey With Autism: What Is It Like Having An Autistic Family Member?

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