Autism not well understood

Brooke Levesque (pink headphones) takes part in a walk for Autism last fall. - Submitted Photo

Brooke Levesque
By Stephen Dafoe

Morinville – Brooke Levesque looks like any other 12-year-old girl at Georges H. Primeau School, but her penchant for wearing bright pink construction headphones sets her apart from many girls her age. The headphones help Brooke block out unwanted noises when she goes swimming or shopping with her family, noises that can cause behaviours that make Brooke look less like other 12-year-old girls.

Brooke has Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), a form of autism sometimes referred to as atypical autism. She was diagnosed just prior to turning 4.

The Autism Society of Edmonton Area defines autism as “a neurological disorder that affects the way the brain processes information.” According to the organization, adults and children with Autism Spectrum Disorders are affected with respect to their verbal and non-verbal communication, social skills, relationships, behaviour, interests and activities. Autism is referred to as a spectrum disorder because of the wide range of symptoms autistic people may display as well as the varying degrees in which the symptoms affect their lives.

Just what causes autism is unknown, but researchers believe it concerns developmental differences and functions in the brain. Current research is tracing theories that suggest autism may be caused by genetics or viral infections, and other theories that point to environmental causes, including allergies and exposures to certain types of chemicals.

Whatever the cause, Brooke’s mother, Dawn Gilmour, said autism can range from children with no verbal abilities to children with higher-than-average IQs. Brooke’s autism seems to fall in the middle of the spectrum; she is able to speak, carry on a conversation, and learn at her own level at school. But she does not function socially as many children her age do. Although treated well at her school by teachers and students alike who are supportive of her needs, Brooke does not have friends in the typical sense. But neither does she seem to seek them out. In fact, social interactions are occasionally puzzling to her; she was recently confused as to why her mother spoke to a stranger at the gas station.

People with Brooke’s form of autism have difficulty with social interactions, tend to be literal thinkers to such an extent that figures of speech and sarcasm escape their grasp. They can also be greatly affected by external influences.
Brooke often has trouble with people humming, singing, crying or making other loud noises, but is not bothered when she turns her own TV to loud levels. The key seems to be the difference between sounds that she can control and sounds she cannot. Thus the pink headphones she frequently wears have been a valuable tool that lets Brooke control some of the external noises around her.

“She finds things too noisy,” Brooke’s mother said, adding her pink headphones have been a positive help. “It just muffles it down. The world is just too noisy to her. She likes to block it and then it doesn’t bother her as much.”

More understanding of autism needed

But while Brooke’s parents and siblings understand her pink headphones and other behaviours, the same cannot always be said for those outside the family.

“Recently, Brooke was being teased by some little girls at her gymnastics club and the sad thing was that she didn’t even realize she was being teased,” Gilmour said. “I knew it though, and I was very hurt by it. I have always tried to look past people’s stares and just focus on what my daughter needs but lately I am having more trouble doing that. I think that our community still needs to be educated. There just isn’t enough patience and acceptance out there.”

It is Gilmour’s hope that education will help people stop judging children with autism before they know the situation or what the children are capable of doing. Autistic children may wear pink headphones and pace back and forth flapping their hands and fingers as Brooke does. They may throw tantrums at what appears to be nothing of importance. They could be the 12-year-old girl screaming, crying, hitting or lying on the floor in the shopping mall. It could be Brooke or it could be some other child with autism.

“They see a girl who doesn’t understand society’s rules,” Gilmour said. “She may say things inappropriately; she may speak too loud or talk about things that nobody else cares about. What they do not see is that those headphones help her to filter out the world around her – a world that is just too noisy for her to handle. They help her to go out into community without having those tantrums. They don’t see that the pacing and the flapping help to calm her and help to center her so she can go on functioning throughout her day. They don’t see that those tantrums are a result of her not being able to understand what is expected of her and that sometimes her body just can’t take the sensory overload that it is in. They don’t know that those tantrums have become less and less frequent. They don’t understand that they are not a result of bad parenting or a spoiled little girl. They don’t understand that she talks about so many different things because she is interested in so many things and wants to share them with people but really doesn’t know how.”

Gilmour thinks it is unfortunate many people are willing to write off autistic children, assuming they cannot do something before they are even given a chance to try. It is a situation she has experienced first-hand with Brooke when people do not give her the benefit of the doubt because of her disability. “How do any of us know how far she will come if we never give her the chance?” Gilmour said. “She surprises us all the time with the things that she knows. The problem is that she can’t always relay that information when she is asked. It will come out at a later time. So she may not seem like she has comprehended something, but believe me she knows way more than she is given credit for.”

Hope for a good future

As the family has watched Brooke become the person she is today there have been challenges. Things most families take for granted: going shopping, eating in a restaurant, going to the movies as a family, driving in the car, or even taking a simple walk in the park can erupt into a stressful episode for Brooke. But like many families with autistic children, there are small celebrations each and every day.

“We celebrate all the little things that most people would think a common occurrence,” Gilmour explained. “Like making it through an entire meal at a restaurant or waiting in line at Wal-Mart without screaming; having lunch in the cafeteria with a friend; greeting someone or asking them a question without being prompted; giving someone a compliment or a gift; looking at the person she is talking to.”
Gilmour said when out in public, Brooke will often walk right past children she knows from school – not out of rudeness, but because she is focused on something else. When made aware of the fact she is quick to say hello to them and have a chat.

Although academically not at the same level as other Primeau students, her family is pleased with her learning. Brooke’s education is provided in a regular classroom with a modified curriculum and a full-time education assistant. She has been in this program for the past three years and has shown growth in her learning over that time. Brooke is able to read, write and do basic math skills, educational abilities her parents are pleased with. But perhaps most pleasing of all is her ability to remember facts and figures and her imaginative spark. “She has an unbelievable memory, an amazing imagination (although some of it she thinks is real) and a wonderful personality,” Brooke’s mother said. “She makes us laugh all the time. She is always talking about becoming an astronaut, or inventing a time machine to travel back in time because she wants to meet a real live dinosaur. She would love to open her own pizza parlour, which is her favourite food.”

Gilmour said, like many parents with autistic children, she and her husband worry a lot about what the future will hold for their daughter, but they will never stop trying to make the world a little easier for her.

The family will be doing their part to raise awareness of autism on Monday – World Autism Awareness Day – by lighting some blue lights on their home.

For more information on autism and its effects on families, visit www.autismedmonton.org/what-is-autism or www.autismsocietycanada.ca/.

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