CullmanTimes.com - Cullman, Alabama

April 10, 2013

Autism awareness: A balancing act in life

By Loretta Gillespie
The Cullman Times

— Her life is a balancing act. Sometimes, to ground herself, she stands on her head. Often, if it’s been a bad day, her mom, Sarah, will wrap her tightly in a blanket and pat her firmly to give her some stability and security.

Her blonde hair is tousled; sometimes she spins on her head until it’s tangled in knots. Sometimes she plays quietly with her younger brother, Colt, for hours. She loves puzzles and can lose half a day when working with one.

Ella Bates is autistic. At a casual glance, or sometimes for extended periods, you’d never know it, though. Ella is at the high end of the spectrum for Asperger’s Syndrome, which is a form of autism.

Autism is a brain disorder which affects a person’s ability to communicate, to reason, and to interact with others; it is a spectrum disorder that affects individuals differently and in varying degrees of severity. It is a lifelong disability that affects one out of every 88 babies born today. Autism is four times more likely to occur in boys than in girls, and is found equally in all walks of life.

Her parents, Brian and Sarah Bates, were concerned by the time Ella was seven months old. “She didn’t nuzzle, didn’t want to be held, and made no eye contact,” recalled Sarah.

Brian and Sarah recall that their baby would scream for hours at a time with no reason. “She had a stare that didn’t connect with anything, but didn’t want to cuddle, and would push away after being fed.”

After extensive testing, sometimes lasting for hours, they were finally given a diagnosis. Autism. It’s not what any parent wants to hear, but the Bates had faced worse — they had lost a daughter earlier on in their marriage, so this was a challenge — but they were up to it.

The family credits Ella’s high functionality to early detection and intensive therapy. Her occupational therapist, Melissa Dew, from Encore, works with Ella frequently. It has helped tremendously with her fine motor skills and thought processes.

For the time being, the Bates have chosen not to treat Ella with medications which might have side effects. “We also feel that it cheats her of being who she is,” Brian said.

They feel fortunate that she was diagnosed at such an early age because it has given her the advantage of therapy early in her life.

Incredibly, Ella walked at seven months, not toddling, walking. “She was at a full-out run by nine months,” said her dad, Brian. “Most of her gross motor skills came early.”

She could out-swing other children her age on the playground. She could swing a bat or a golf club from the time she could walk. She was amazing in that respect. “She also has a memory like a steel trap,” Brian said.

Ella, who is five now, can write her name, she could read words at an early age, although she might not be able to process some of them and she has an almost perfect memory for details.

Along with Asperger’s, Ella also has echolalia, “It’s a repetition of words and bad sensory issues,” Sarah explained. “It’s called Sensory Processing Disorder (SPD). Too much light, sound, scent or feel affects her ability to focus. With the help of therapy Ella has learned how to tell us when it is too loud, bright or smelly.”

“Imagine going to the store: You run in shop, leave, and go on about your day. You may be aware of your senses, but these things don’t bother you. Ella, and kids like her see, smell, and hear everything,” continued Sarah.

Sarah describes what a typical trip to a big discount store is like for Ella, and some autistic children.

Ella will get out of the car and she will:

HEAR:

Everyone’s car door slamming shut

Every cart rolling

Every car that is starting

Everyone’s conversations

Someone popping their gum

Cars accelerating at the stop light up the road

Carts slamming together in the cart return in the parking lot

A bird tweeting

Airplanes over head

Sarah describes what the therapist has told them about Ella’s experience. Ella cannot describe her feelings because for her they are normal.

How frustrating for a child to experience these feelings and not be able to make others understand what is happening to them.

“Ella hears things long before we do, like a distant helicopter,” Sarah pointed out. “All of these sounds are amplified as if she has her ear up to it and she hears all of this at one time like volume on full blast. Certain pitches are worse then others.”

On this typical outing Ella would also smell exhaust fumes, oil burning, the hay in truck three lanes over as if she was playing in it and someone’s perfume, “Again it’s like someone has just dumped these scents in a bucket and poured them on her,” Sarah explains patiently.

Ella sees repetitive patterns like joint lines in cinderblock/brick, spacing of light poles in the parking lot, busy patterns like someone’s plaid shirt or paisley top and everything is almost dazzling and hard to focus on.

Her sense of touch is also heightened in comparison to a person without autism. Ella feels every wisp of wind, extreme in temperatures/barometric pressures and every string that is on her clothing. “Some touches, especially a light touch, is amplified so that it seems to Ella as if someone is scratching her hard,” Sarah explained.

And that’s just the parking lot. When Ella goes in the store she sees, hears, smells and feels things we don’t even notice. Things like bright lights, beeping cash registers, the cart with the bad wheel, smells from people, the deli, the scent of the sizing in new clothes, even the tires in the back of the store. “Most people are unaffected by all these things and so many more, the list goes on and on,” said Sarah. “For Ella it is all like up front on full volume. Most people can’t imagine how it feels, especially for a child. That’s just one example, but this affects every aspect of her life.”

And all the while, this sweet little child is trying so hard to hold onto her emotions, not wanting to let on that the world is spinning out of control, but sometimes it’s impossible for her to hold those emotions in. At this point Sarah describes Ella’s reaction as “having a meltdown.” This is when Ella can no longer hold it in. She tugs at her mother, trying to get her to take her out of the store. Many times Sarah is standing in line waiting for a prescription or at the checkout counter when Ella’s fuse runs out.

She might scream uncontrollably or pull at her mother frantically. She isn’t having what might look like a tantrum to some people; she is having a sensory overload that is terrifying and out of her ability to control. The sounds, lights, smells and the strange people are magnified. At that point she has held it in as long as she can.   

“I think many people have misconceptions about autism, I think they don’t realize the vast spectrum. It’s not only a brain disorder but it has some physical side effects too,” said Sarah.

Sarah says that the therapist has explained to them that Ella feels ‘floaty’ and unstable. If you’ve ever had inner ear problems you might understand what it is like for her. “There are things that help to ‘ground’ her, we call it ‘stemming’ (stimulation). Spinning, flicking her fingers, a certain gesture, rocking, shaking her head and chewing things other than food are some of the things that help her to cope.”

Ella will do these repetitive things for hours. “Her therapist taught us that walking with ankle weights helps,” Sarah said. “Heavy work helps too. When Ella was a baby before we knew what was going on, we noticed that she loved pushing and pulling things like a case of water or laundry basket.”

What does Ella do for herself? She just recently started to tell her parents when things are getting to be too much for her. “She still will cover her ears and have meltdowns,” Sarah said. “Meltdowns are far different than a tantrum. Meltdowns last for hours on end.”

Ella was not able to tell anyone with words how she felt, her feelings manifested into terrible uncontrollable behavioral issues. “For years we just knew ‘something’ was going on but couldn't always figure it out. Between Children's Hospital and her therapy we finally saw some improvement,” Brian said.

It is only more recently, in the past six months or so that she tells them how she feels, but she doesn't always tell them if it is too much or she still can’t find words. “We always knew about the hearing since she was about four, because she would tell us she heard ‘balances’ (ambulances) and crashes on the ‘busy street’ meaning Highway 157. We would only read about them the next day and realize she really did hear what she said,” Sarah said.

 Ella also hears the pitches much differently than other people.  

“It was Ella who sort of told us this, however, it is the result of her therapy and perhaps maturity that she can understand what she is feeling now, and is able verbalize her feelings a little better,” said Sarah.

 It is a disruption when an abrupt change in routine occurs, which is very difficult. Her parents have had to learn to stick to a schedule that Ella understands. Sarah has a calendar attached to the refrigerator that has pictures on the dates so that Ella knows what is planned weeks in advance. She gets upset if there is a variation to the plan. “This is one of the hard things to explain about how her brain is wired differently, which causes the behavior issues,” Sarah explained.   

Life with Ella can be a challenge. She is on the go from the time her feet hit the floor in the morning until she goes to bed at night — sort of like an energizer bunny that never runs down.

“People don’t understand,” said Sarah, with a stoic shake of her head.

There have been times when strangers have muttered under their breaths in stores that Ella was undisciplined and should be better controlled.

It’s naturally very upsetting to her parents because they feel that people think it is a reflection on their parenting skills. If they were to raise their voices to Ella, especially in public, it would only make matters worse. The last thing any autistic child needs when in a world filled with chaos is to be yelled at. It can be compared to drowning — if you can imagine someone yelling at you to stop making a fuss while you are drowning.

The general public who has never been around an autistic child might not realize that what they are seeing is a child who is having sensory overload to the point that it’s like having a nervous breakdown, not a temper tantrum.

A genetic component, external or environmental factors may cause some forms of autism but it is not caused by bad parenting. There is no cure at present. Autism responds well to high to highly-structured, specialized education programs and on –on-one or small group support.

Ella just wants the pandemonium around her to stop — most likely, for Ella Bates- it never will. However, great strides in promoting an understanding of her condition are being made by such public figures as Temple Grandin, who has achieved many accolades for her ground-breaking work with animals. Grandin is a champion for kids like Ella, having been able to vocalize for them what it is like to live in a world that is much like a carnival at warp speed.

To help promote education and awareness, April has been designated as National Autism Awareness Month. The Autism Society of Alabama will hold a Walk For Autism on Saturday, April 27.

This fun day includes a two-mile walk, bubble creation station, face painting, bounce houses, kids activity center, food vendors, and cool prizes for the kids.

There will also be resource vendors who can provide information about autism and Asperger’s.

Registration begins at 8:30 a.m. The cost is $30 in advance, which includes a T-shirt, or $35 the day of the walk. The walk will start at 9:30 — with a balloon launch of 88 red Autism Society of Alabama balloons, with messages and information about Autism inserted.

To register or for more information visit walkforautismAl.com or call 877-4AUTISM.

This outreach and support will help to continue research for the autism and Asperger community. All proceeds benefit the mission and projects of the Autism Society of Alabama.

The Autism Society of Alabama has a local support group for the Cullman area- Cullman Autism Networking Group: www.facebook.com/CullmanAutismNetworking.

 For more information, contact Cullman Area Walk for Autism Coordinator, and Co-leader for Cullman Area Autism Networking Group, Rhonda Davis, at 256-962-2208. Rhonda is mom to Jordan, a 10th-grade student at Hanceville High School, with Autism, and is the Cullman Area Walk for Autism Coordinator, Co-Leader for Cullman Area Autism Networking Group, Autism Society of Alabama. Contact: 256-962-2208, pdrd@hotmail.com

You may also contact co-leader for the Cullman Area Autism Networking Group, Autism Society of Alabama, Jessica Dyson, mom to Sam, a 10th grade student at Good Hope High School, with Autism. 256-339-1151, nosenabook75@yahoo.com or 256-339-1151, or jessdysonfam@earthlink.net.