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'Autism is just like anything else in life that people have to deal with'

This feature is about people of our community and things we may be surprised to know about them. Everybody does have a story to tell, even if they don't think so themselves.
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This feature is about people of our community and things we may be surprised to know about them. Everybody does have a story to tell, even if they don't think so themselves.


There are people in our community whose sphere of influence may impact all residents, but there are some who move in much smaller circles, with just as powerful effect.


Once such Battlefords resident is a 24-year-old young man named John. He is shy and doesn't like having his photo taken, so none accompanies this story. He says the decision to be interviewed was a brave enough step for him.


John is one of those individuals who doesn't fit the pattern, yet his presence within a family can be so profound, in a positive way, it creates a whole new dynamic.


John lives with his parents, with assistance from the Saskatchewan Assistance Income for Disability. The SAID program provides an income for persons with significant and long-term disabilities. John doesn't drive, and may never be able to work or live on his own, but if he does, the SAID program will continue to be invaluable to him because, in 2012, it was expanded to include people who live independently.


John has a multi-pronged diagnosis. Over a course of time as a middle years student, John was diagnosed as being on the autism spectrum at a high functioning level, as having bipolar disorder and obsessive compulsive disorder, and as having a non-verbal learning disability. NLD is a learning disability generally less known and less understood than language-based disabilities such as dyslexia.


John gets through his days, which are not always easy, with a sense of humour and his family around him.


He says his bipolar disorder has the biggest effect on how he feels about life in general.


"I'm up and down and I change my mind every 10 minutes," he says.


However, he is aware it is his learning disability, which he doesn't have the ability to understand exactly, that has the bigger impact on what he is able to accomplish in terms of society's general expectations. It's the main reason he doesn't have a job.


"The biggest social anxiety is when people ask me what I do for a living," he says. "It's hard to explain, because I don't want to be branded as useless or lazy."


About his learning disability, he says, "I just understand that it's there. That's all."


About his other diagnoses, John says, "Being on the autism spectrum, bipolar, OCD, social anxiety, insecurity all in one is tough. It's a chore."


Symptoms of NLD were the first to come to the attention of his teachers, and he was assessed for attention deficit hyperactivity disorder, which presents with similar symptoms. That he didn't have ADHD was his first "diagnosis," however, that he had NLD was his last. That didn't come until eight years later, says his family. The years in between were frustrating for them, for John's teachers and, of course, for John, they add.


Fortunately, John's school was supportive and frequently went to bat for him when it came to getting help and even assessment. With the diagnosis of pervasive development disorder not otherwise specified (PDD-NOS), or atypical autism, John was assigned an educational assistant. That was in Grade 5.


"I didn't like school in general," says John. "The best thing about school was my EA. We had our ups and downs but I am fond of her. She is a nice person."


He had the same EA for three years, and they still keep in touch.


High school was much more stressful for John, although he was in a modified program and there was EA support available.


By then he had received the diagnosis of NLD, which some believe can include the social behavior patterns of a place on the autism spectrum formerly known as Asperger syndrome. In addition, NLD causes problems with non-verbals skills of arithmetic and also some visuo-spatial skills, even motor skills, especially control over fine movement. He got the details - in fact he might fixate on the details - but the big picture eluded him.


He was the target for some bullying, but it wasn't his major stressor.


"There were other kids who were bullied a lot more than me," he says, although he believes he was the only one bullied because he had a mole beside his nose. He also points out he had friends who watched out for him.


The stress he experienced built up as it does for many NLD students. Their vocabulary and reading skills suggest their academic skills should match that level, but that is seldom the case with NLD. NLD individuals are often highly verbal, but their areas of deficit are in nonverbal areas, making them unable to make the kind of mental leaps expected of high school students. When it becomes tempting to try mainstreaming NLD students back into regular classes, stress increases exponentially.


As John's stress increased, so did a variety of debilitating OCD symptoms. He left school half way through Grade 12, with his parents agreeing there was no reason important enough to let that kind of OCD episode carry on - not even a high school diploma.


"I felt bad about not getting my Grade 12," he says, "but my OCD was just more than I could handle."


John's family describes his OCD at that time as having reached a debilitating level, which was excruciating to watch.


OCD can be a lot more than frequent hand washing. It John's case it could mean not bringing himself to be able to turn off a tap once he'd turned it on, not being able to leave a room unless he'd been in it an hour. Feeling compelled to open the car's door once it was on the road. Opening and closing the family home front door repeatedly. It remained that way for several years and he began working with a psychologist to help get it, and other issues, under control.


"It's still there," says John. "I always will have it but I have it more under control. I'm still working on it."


John has a sense of humour about his OCD. He laughs, "Ironically, my OCD got me over my OCD. I got obsessive about overcoming all these things. I found it was a fun way to do it. So basically my OCD conquered my OCD. A paradox."


He adds, "I try my best to enjoy every day. My OCD sometimes manages to get me through the day, it seems."


As an adult, John likes to live a quiet life. He finds it the best way to ward off panic attacks, which he admits he spends more time worrying about than actually experiencing. He spends time with his family, his pets and helps with chores around the house. He gossips about soap operas on the phone with his grandmother. He enjoys spending time with his nieces and nephews.


When it comes to dealing with people he doesn't know, however, he prefers to stay quiet, and in the background.


"I don't always know what people's reactions will be to things I say," he says. "In the past I would say something and I would get an opposite reaction from someone. I have trouble sometimes with things like that. Maybe that's part of the autistic thing."


John's definition of autism is "a different way of thinking," and he takes it in his stride, knowing that, like snowflakes, every person on the autism spectrum is unique.


"Autism is just like anything else in life that people have to deal with."


With people he's comfortable with, he is garrulous, to the enjoyment of his inner circle, the only ones who really see this side of John. He can regale an audience exhaustively on subjects of interest to him, aided by the amazing rote memory some autistic individuals and many NLD people display. He's exhausted the histories of the British and European royal families, and now he's on to the history of music. He has an excellent ability to research online.


He also has an extensive collection of music, of all genres and vintages, and he can seldom be beat on any music or movie trivia.


He enjoys living in Battleford.


"I prefer that it's not a huge city, it's part of the history of my childhood. I like the old historic buildings here," he says. "When I was young I was fascinated by the history of the town, back in Grade 4, because our class studied the history of Battleford and where all the historic buildings are and I thought it was pretty interesting. I got my grandparents to take pictures of me next to all the old historic building and I really like those."


He also likes the quiet.


"I like that it's not big, it's quiet," he says. "I like the quiet neighbourhood. It's easy to walk around, you know where you are going. I don't have to worry about getting lost. I like it because it's recognizable and I know where everything is."


What might happen in the future, John prefers not to talk about.


"I try my best not to think about the future."


He does, however, look to the past sometimes. He remembers having always been fascinated by colours.


"I love colours," says John. "I can't explain it. That's something that's unexplainable. It's like trying to explain how the Earth came to be, that's all I can say."


He also remembers asking a lot of repetitive questions as a youngster, not uncommon among NLD kids. It's their preferred way of finding out about the world. John admits he still does it sometimes.


"I'm aware I do that," he says, "I just like the thrill of the same response, I guess."


Top on the list of John thrills, however, is making people laugh, especially his mother.


"It's kind of fun watching people laugh at something, especially something I said."


He's not keen on his mom telling people much about him, being a private person, but he understands he can't be invisible either.


"My mom told me one of her friends said when she talks about me her 'face lights up.' So I guess it's okay if she does talk about me sometimes."


So in this story, I just did.

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