Understanding autism from the inside out

Chilliwack family hoping to educate others on what life with autism really is, and isn't

Sisters Maddy (left) and Lauren laugh at their home earlier this week. Maddy has autism and both girls and their mother are hoping to share the realities of living with autism.

Fifteen-year-old Maddy be-bops around her mom at the entrance to their home.

The teenager smiles and introduces herself. She’s ready for an interview, and eager to talk about her life.

Very eager.

There’s school, and small talk on her favourite classes  – ceramics, chef’s training and social skills. There’s her work experience, which keeps her busy at a local daycare. She hopes to one day work with children, or the elderly, or maybe animals. She talks about her favourite pastimes, especially those shared with her older sister, Lauren. The girls shop, walk along the beach, go on picnics, and listen to music together.

“I like to go out with my sister,” Maddy says, especially now that Lauren is driving.

“The girls have great adventures together,” says Lisa, their mom.

And then, as can be expected in a conversation with teenaged girls, there is the delicate art of making friends. It’s not always easy to make friends, Maddy says; it can be just as hard to keep them.

For Maddy, it’s made even more difficult. Maddy has autism, a diagnosis made when she was about eight years old. So on the topic of autism, Maddy is a somewhat of an expert. Her official diagnosis is pervasive development disorder not otherwise specified, or PDDNOS.

Her description of autism spectrum disorder comes out thoughtfully and eloquently.

“To me, autism is something that all people have,” she explains. “It could be autism that you can see, some kids can walk and some can’t. Some kids have brain impairment, so they can’t talk. Others can talk.”

Everyone has difficulties in some area of their lives that could be considered an autistic trait, she says.

While Maddy explains her understanding of autism, Lauren sits beside her and listens intently. Her mother listens, too. Both beam with pride and wait with patience.

All three want the world to know what autism really is, and isn’t. They want people to realize that we are all more alike than we are different.

Autism is not a disease and it is not a mental illness, Lisa explains.

People diagnosed with autism may exhibit characteristics like resisting touch, speaking out spontaneously, having difficulty in social situations or being overly trusting. There can be language development issues such as abnormal use of pitch, repeating phrases often, or beginning to speak at a young age and then stopping. While autism can manifest in many different ways, each person’s experience is also unique. It can also be a long road to a diagnosis, and difficult to understand.

But there are ways to learn to cope with autism.

Right now, Maddy is in a 14-week peer group in Burnaby that focuses on teaching some of the abstract social skills that are difficult to someone with autism, like phone conversations. They will work on turning “acquaintanceships” into friendships, and Maddy says she’s looking forward to improving herself.

“I feel so much better,” Maddy says, because of the group.

In her living room, she cuddles up to her sister playfully. They’re preparing for their portrait to be taken, and the closeness comes naturally.

They sit embraced on the couch, legs propped up side-by-side on the ottoman.

They tease each other, and Maddy keeps Lauren laughing, cracking jokes and making funny faces.

“I want people to know that you have be patient,” Lauren says. “People with autism have amazing qualities as well. People kind of dismiss others if there’s not an instant connection, but you have to dig down deeper.”

Being Maddy’s sister has given her the unique opportunity to both understand autism, and become an advocate.

As for Maddy, she wants others living with autism to have some hope, and offers words of encouragement.

“I want them to know that autism is hard but you just go through it as it comes,” she says, smiling confidently. “It may be hard but it gets easier.

“You know you can’t change the way you are, and autism is unfortunate but there’s nothing you can really do about it. You have to stand up and keep going, brush yourself off and keep going.”

jpeters@theprogress.com

 

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