Written by Amanda Chiddenton
Hello Amanda…
These are the words of Freddie, a puppet that Jeff Dewar uses to communicate. He’s one of two brothers who were the first to be diagnosed Aspergers Syndrome at the Alberta Children’s Hospital. Today they are students at Mount Royal University, and define success on their own terms.
In 1993, David Dewar was one of the first children to be diagnosed with Aspergers Syndrome at the Alberta Children’s Hospital. Though David’s mother suspected her youngest son Jeff might also have this form of autism, the doctors did not.
It wasn’t until almost three years later, when a doctor noticed Jeff had an unusual obsession for his doll that led to his diagnosis. Today both brothers attend Mount Royal University and Jeff has his puppet collection in his backpack with a Nintendo DS.
“Hello, Amanda,” said a very high-pitched boyish voice, which had an air of masked masculinity to it.
I was speechless due to being completely flabbergasted by this turn of events. After a second or so I realized how amazing this was. I reached out to shake his hand, “nice to meet you, what’s your name?” I said with a hint of professionalism and renewed enthusiasm.
“My name is Freddie! Nice to meet you too!” Freddie said. He had blonde hair, a felt face and big white eyes with dilated black pupils. He was wearing a green and red shirt and a big smile.
Freddie is a puppet. He is one of many dolls and puppets collected by Jeff Dewar. Though Jeff seemed to have a special affinity for Freddie during the course of our many conversations, Freddie was not his favourite.
“Freddie is one of the new members of the family,” explained Laurie Liesemer, Jeff and David’s mother. She pointed to a cabbage patch baby doll, which was clearly old and loved, to the point of being worn-out. “Jeff’s first doll was Billy. He was the one Jeff took to the appointment the day the doctor saw Jeff’s hyper-focus. This is what led Jeff getting more testing done.”
Liesemer explained that a hyper-focus in terms of Autism is a type of obsession. Sometimes it’s all they can talk about or do. It can be anything from computers, dinosaurs, math or music. In Jeff’s case its dolls and puppets.
“I had seen many symptoms of Aspergers Syndrome in Jeff, though the doctors didn’t seem to see what I did. The day of that appointment when Jeff was about six-years-old, I almost didn’t let Jeff take Billy. I don’t think I realized at the time that Billy was part of his symptoms,” Liesemer explained.
Today Jeff is 21 years of age and David is 22. They are both attending Mount Royal University and have begun to start their adult lives. Though they do have challenges like social skills problems, the inability convey emotions and expressive written assignments as well as many others, their life has purpose and they are happy. David is currently enrolled in the Early Learning and Child Care program and Jeffrey is in the Computer Science Transfer program.
Like most people in there early 20s neither David nor Jeff are certain about what they want to be in their life. However, to the typical person Jeff and David’s life may not seem normal because of the symptoms attributed to Aspergers Syndrome. Today autism and Aspergers Syndrome are on the rise and it’s important for us to gain compassion for individuals with this disorder.
The beginning
I have always been fascinated with people who suffer from learning disabilities, speech and language problems and autism. I aspire to one day be a speech pathologist. So, when the opportunity to write a feature story came up, I knew the direction I wanted to take it.
However, I wasn’t exactly sure what I wanted to focus on. There were so many options, from people who are bullied because of a speech impediment to people who have suffered strokes and struggle to convey even the simplest words like, “I love you,” to their spouse.
I had known Bonnie Blankert, an access advisor at Mount Royal University’s Accessibility Services, for a while and had mentioned this idea to her.
Three days after I talked to her she emailed me back with Jeffrey Dewar’s name and phone number and left me with the words “As I said, Jeffrey is quite unique. I hope you appreciate his differences in communication. “
I wondered what that meant. I felt blind, because I let her pick what I was going to write about, but I felt excited to see what she meant by “quite unique.”
I called Jeff that night to do a quick interview. His mother answered the phone. She had a friendly demeanor and seemed surprised to hear an unfamiliar female voice asking for her son. She questioned my motives immediately and was excited to hear about my intentions to write a story. At this moment I still had no clue why Jeff was unique.
When he answered he had a soft and somewhat unvarying quality to his voice and with every question he would take long, unnatural pauses. I asked him about himself and he told me that was one of his biggest struggles. I then began to ask him about his interests, which I found out were many things, like computers, video games, school, and even playing board games like Settlers of Catan. He also has a paid job with Autism Calgary as a puppeteer for a program called Friend2Friend.
I smiled at this because I knew at that moment he must have Autism. He confirmed this suspicion. “I have Aspergers Syndrome,” he said.
Though I did know a little bit about this disorder, when I got off the phone I did a little bit more research. According to Autism Society Canada, approximately one in every 165 children suffers from an Autistic Spectrum Disorder. Approximately 15,000 children in Canada have Aspergers Syndrome. The society warns that the number of Autism spectrum disorders is on the rise.
I spoke with Colleen Eggertson, who is a psychologist who used to work for Autism Calgary and currently has a private practice. She also has a 16-year-old son, who was diagnosed with the disorder when he was three-and-a-half. She is also a family friend of the Dewar family.
Eggertson said that all children with Autism are different; some can be more severe and have no verbal communication skills while others like her son can have very strong verbal skills. She also said that this neurological developmental disorder affects communications skills, social understanding and interests.
“Often children with Aspergers Syndrome and high functioning autism display what seems to be a lack of empathy, strong rigidness in reasoning and logic, difficulties with social skills, and can have a range from average to high IQ scores. Strong obsessions with one or two interests is also another common symptom,” said Eggertson during a phone interview.
The interview that turned into a family gathering
A few days after my brief phone conversation with Jeffrey, I found myself outside the front of his family’s two-story house in the north end of Calgary, Alberta. It wasn’t exactly how I pictured it. It had a tent-trailer in the driveway and an endless amount of children’s toys scattered across the front lawn.
When I got to the door there was a middle-aged man and two delightful young girls named Emily and Natalie who are four and five years old, respectively. The man was Jeff’s stepfather, Louis Zimmerman, who has been in Jeff’s life for 11 years.
Not long after I got into the cluttered home, I was in their living room talking with Zimmerman when Jeff came down stairs. He was thin, wearing all black and had long, straight blond hair that went nearly down to his shoulders. He was holding Freddie and Billy. He sat down beside me on the love seat and I introduced myself.
It was when Jeff introduced me directly to Freddie that I realized what Blankert might have meant by, “unique way of communicating.”
I have to admit at first it felt a little strange talking to a puppet. But once you see Jeffrey’s eyes light up when he holds Freddie, you begin to realize how normal it is for him and you forget about your own notions of what typical is.
As my interview progressed I found myself forgetting to ask Freddie a question and going straight to Jeffrey.
“So, Jeff, I mean Freddie – what’s it like to have autism? I mean what’s it like for Jeff to have autism,” I asked, getting flustered from going back between Jeffrey and Freddie.
“I am not sure how to answer that,” Jeff/Freddie said. “It’s not something I can explain.”
Zimmerman answered, “In a lot of ways, having Aspergers Syndrome is like being a Vulcan [the fictional race of people from the Star Trek series] with a sense of logic that is from a very alien culture,”
“Apricot, butter, gym, socks, peter,” exclaimed Freddie.
“What Jeff means is that sometimes when we are telling him something, the words are English but it doesn’t make any sense to him,” explained Zimmerman said. “Right Jeff?”
Jeff and Freddie both nodded.
Suddenly the room began to fill with more people including Liesemer; Luke Northay, a long time friend of Jeff; Darcy VanDerwell, 22, the nephew of Jeffrey and David and Natalie and Emily all joined into the room. This group interview wasn’t exactly planned this way. I got the feeling that this house is a very vibrant, open, happy place that is often full of people and that this family has a lot of friends.
Not a second later David, Jeff’s older brother came running into the room coming to get the two little girls. He had a calm exterior and began to comfort one of the girls who began to cry. He seemed like a pro at dealing with children. Had I not known David also suffers from Aspergers Syndrome, I wouldn’t have been able to tell.
David said that he had to teach himself how to show empathy and that this was not something he was natural at. He couldn’t recall exactly how or why he learned empathy.
“It was a gradual process. I guess I considered it a logical thing to learn,” he said struggling how to answer.
David loves children and wants to work with them after he is done school. Liesemer told me that they are going to change the program next year because he is struggling with a lot of the writing that is involved. She hopes to one day find David working at an entry-level position with a daycare.
Getting to know the family
David finally had convinced the girls to come with him and I was able to start talking to Liesemer. I really wanted to know her side of the story.
Liesemer has been married twice and is currently in common-law with Zimmerman. She had two children from her first marriage: Phillip, 41 and Jenni, 36. Phillip and Jenni are considered to be typical, meaning that they did not suffer from Aspergers Syndrome or any other neurological disorder and function normally in society.
Liesemer said that once her two youngest sons were diagnosed and she was able to start implementing proper strategies, things became easier. However back in the early 1990s information on Aspergers syndrome was limited and there wasn’t the same types of support groups that there are now.
Some of these strategies included giving her sons extra notice when they would leave a room, getting aids from teachers who knew how to deal with an autistic child, allowing Jeff to sit in the front of the room and near a door and allowing David to get up and move around because he doesn’t like sitting in a desk for long. Even allowing Jeff to take a doll or puppet with him to school for comfort was something that helped him cope.
“We had to fight him on just bringing one small doll with him to school every day,” recalls Liesemer.
Jeff uses his puppets as a coping strategy. He doesn’t play with them or dress them up like a child would. It’s easier for Billy to talk about Jeff than for Jeff to talk about Jeff. He has over 20 different puppets and dolls and each of them have a name, voice and even different mannerisms.
“What Billy wants, Jeff wants, even though Jeff can’t verbalize it,” said Liesemer.
I asked Liesemer what it is like to have two children with Aspergers Syndrome. She said that one of the hardest parts for some parents is that they may have to let go of the dream that their child might graduate from university to be a doctor, engineer or a lawyer. So when they find out their child has a disorder like Aspergers Syndrome, they may feel disappointed. She said she didn’t struggle with coming to terms with this common obstacle.
“For me the hardest part was accepting that my sons may never find a partner and that they may be alone. I still hold out hope they will find someone special.” Liesemer said with hopefulness in her voice.
“I really just want my kids to be happy. The reason they are enrolled at Mount Royal University is because of the structure that school gives them. They get bored when they aren’t out learning,” Liesemer said.
Liesemer said that though Jeff is in a computer science program; she doesn’t see the same passion that she saw Allan had. She sees that same passion when Jeff is with his puppets. This is why two years ago she volunteered him to work with Friend2Friend as a puppeteer. This now is a paid job for him where he travels to different schools in Calgary doing a puppet show for children to teach Autism awareness.
“This program has really helped him get out of his shell,” Liesemer commented. “He was even nominated for the Premier’s Council on the Status of a Persons with Disabilities Award of Excellence for his work with Friend2Friend.”
Liesemer suspects that Aspergers Syndrome is genetic, at least in the case of her family. With both of her sons as well as their father, Allan Dewar, and grandfather showing symptoms of this disorder, it would be hard to deny that it wasn’t genetic. They were part of a study a few years ago at the University of Calgary that looked a specific gene that might cause Aspergers Syndrome. The Dewars were negative for this gene.
Games night
Though Allan Dewar, Jeff and David’s father and Liesemer are divorced, they are still friends and Allan has a strong role in his son’s lives. Allan has a good relationship with his sons and often takes Jeffrey or David to a movie and he attends games night that Liesemer and Zimmerman plan every month for their family and friends to get together and socialize.
Liesemer and Allan both agree that they play very different, but equally important roles in their son’s lives, Allan helps his sons with homework and all the technical work, while Liesemer plays the role of the planner and organizer.
Allan currently works for Kelman Tech in software development. Allan’s hyper-focus was computers and science and Liesemer believes that is how he has been able to be successful.
I met Allan at one of these games nights. At first he seemed normal, he shook my hand, gave me eye contact, spoke well and was very kind. He looks a lot like his two sons. He is tall, has a long face, and chestnut-coloured hair like David. Unlike his sons, his hair is short.
“I haven’t formally been diagnosed with Aspergers Syndrome, however, when my sons were in their teens I was able to relate to them more, compared to when they were children,” said Allan Dewar. “Mostly in social situations, I found it difficult to make friends and I didn’t have a lot of them,”
At first Allan seemed like every other adult but it wasn’t until a little bit later that I realized how timid he was. I found that he did not socialize with other typical adults in the room; he just kept to himself and gravitated around the room awkwardly.
At this games night I observed another difference. I first sat in Liesemer’s and Zimmerman’s dining room having a conversation with them and some of their family friends. We laughed, conversed back and forth with ease, talked about many different subjects, told stories. It was a normal, friendly conversation. Then I decided to walk into the den where David, Jeff and Eggertson’s son was. I started out the conversation like I would with any other person around my age; I asked them what they were up too.
I got zero eye contact from David, who sat there setting up a game of Carcassonne, and the same from both Lenny and Jeff who were intently playing Magic the Gathering. Mostly David and Lenny talked to me; Jeff barely had anything to say. I noticed how perfect their grammar was and how advanced their vocabulary seemed. After a few moments, I noticed I was the only one holding the conversation and that it seemed like they forgot I was even in the room.
David and Jeffrey may struggle socially with typical people, but they are definitely not lacking friends. The two brothers are best friends and are very close to one another. Most of their other friends suffer from Aspergers Syndrome, Autism or other developmental disorders.
“I guess we like to tag around like minded people,” said Luke Northay, a longtime friend of Jeffrey, who suffers from an undisclosed developmental disorder. “We don’t always mesh with typical people. I guess you could call us nerds.”
During the games night both Liesemer and Allan both mentioned that they wanted to see their sons get jobs, be somewhat independent and maybe even get married some day. And though Liesmer doesn’t put the expectations of graduation from university on her children, she would like to see them do it.
“They are in university now, and it is a possibility for some children with Aspergers, they just need to have the right support systems available,” said Liesemer at her dining room table, right when Eggertson came to join in the conversation.
“If we as a society focus on the abilities of people with disabilities instead of their disadvantages, they will have a lot to contribute,” said Eggertson.
During a phone interview a few days later, Blankert said that there has been steady increase in the amount of students with Autism as well as other learning and psychiatric differences that are attending Mount Royal University, though she couldn’t give me an exact number.
“Some of the most intelligent people that are attending this school have Aspergers Syndrome. It’s not impossible, though they may need modifications to make it work for them,” Blankert said.
Jeff vs. Class
Jeff invited me to his philosophy class. When he met me near his classroom, he almost blew past me, not appearing to be looking for me. Thankfully I flagged him down and we headed into the lecture hall.
During this class I observed a few things. I noticed was that he swiveled left and right in his chair for the entire hour and a half lecture. His chair was directed towards the left wall and barely ever looked up at the professor. Lastly, he played on his Nintendo DS throughout the entire lecture. What was the most mind blowing thing was that anytime the teacher asked a question, Jeff would answer out loud the correct answer.
I remembering thinking, “Wow, he is paying attention!”
I even started keeping score against the entire class. I think in total he answered 11 questions right while the entire class answered 14. Not bad considering he was up against an entire class.
I talked to his professor, Mark Gardiner, in his office the next day. “Jeff is a great student. He always has his work done, always does great work,” said Gardiner. “He’s one of my best students.”
Gardiner attributed some of Jeff’s success in his philosophy logic class because of Jeff’s ability to be a mathematical, logical and abstract thinker.
Gardiner was told at the beginning of the semester that even though it may look like Jeff wasn’t paying attention, he probably was. So when he saw him playing with his Nintendo in class, he didn’t have the same reaction he would have had with a typical student.
At the end of the lecture I looked at Jeff and said, “did you bring Billy or Freddie to class?”
He picked up his black book bag and opened it up. “Nope, today it was Konata’s turn,” Jeff said as he picked up the blue haired anime doll and smiled a comforted smile.
Last thoughts
I will never forget the Dewar family. They taught me that no matter what disadvantages we may face in our lives or what our notions of normal are, we all have a different way of seeing the world and have something to offer the world.
My journey into the world of autism spectrum disorders has inspired me to want to continue on understanding this and other disorders like it. If this story has inspired you to learn more about autism please visit: http://www.autismcalgary.com.
