Keeping Pace with Rare Disorders

Deirdre McLeod scans a book at the University of Oregon Knight Library.

Dec. 6, 2009

By Violet Oliver

Of all the things Deirdre McLeod brings to class at the University of Oregon each day, few are more important than her laptop since it helps her record her professors’ lectures.

“I will have days where what is being said two floors down outside of the classroom is more audible than what the teacher is saying twenty feet away from me,” McLeod explained.

When McLeod was 20, she was diagnosed with Asperger syndrome, a developmental disorder that, among other things, affects auditory processing and social interacting.

According to the National Institute of Neurological Disorders and Stroke (NINDS), Asperger syndrome is an autism spectrum disorder that two out of 10,000 children develop in the United States.

McLeod also has to pay close attention to numbers because of an existing learning disability called dyscalculia — a disability involving difficulty in comprehending math.

“I try to avoid the ones that I know will try to flip on me: 3s and 8s, 6s and 9s,” McLeod explained.

According to Current Biology, an online science journal database, approximately five percent of the population has dyscalculia, which is to math what dyslexia is to reading and writing. Signs of dyscalculia include difficulties with counting and measuring time, along with reading and remembering numbers.

During her childhood she was in several different special education classes that focused on math, which led her concentrate more to mask her disability. However, she still struggles with copying numbers down. McLeod’s disability is most noticeable to her when she goes to work at the University of Oregon’s Knight Library, where she sorts book returns, scans articles and processes incoming books.

“I have to type in an eight-digit code and make sure that I’ve typed it in correctly,” she said.

McLeod has managed to minimize mistakes because she understands what numbers she is prone to interchange; however, there is only so much she can do to control how her brain naturally processes things.

In the second grade, McLeod was misdiagnosed with Attention Deficit Disorder (ADD). “Asperger’s as a diagnosis was less common when I was getting tested for a learning disability,” McLeod explained.

Attention disabilities run in McLeod’s family. One of her five siblings is diagnosed with ADD and another has Attention Deficit Hyperactivity Disorder (ADHD). McLeod is unsure if Asperger’s or dyscalculia runs in her family.

“My parents have obvious tendencies on the [autism] spectrum, but no actual diagnosis,” she said.

Growing up in a Catholic household in the Los Angeles region of Woodland Hills, Calif., McLeod spent her childhood checking the numbers in her math homework two or three times before turning it in.

McLeod threw tantrums about changes to her daily rituals; she found comfort in books and felt alienated from her classmates — all common symptoms for people who have a disability within the autism spectrum.

“I remember the kids thinking I was strange,” McLeod said. “I’ve also heard tales about how my poor mother, who at that point was working a graveyard shift, had to get called three or four different times in two months because I stressed out, I freaked out. The routine wasn’t right. I threw tantrums and hid under teachers’ desks.”

The outbursts made it hard for McLeod’s teachers, and she switched schools twice.  

McLeod remembers her sixth grade teacher telling her parents, “ ‘You have a wonderful daughter, very intelligent, very smart, not quite normal; and the next teacher down the line will prune at her, stick her in a box and she’ll be like a star in the box where it’s kind of slowly squeezed to death.’ ” 

The teacher’s words prompted McLeod’s parents to transfer her to a performing arts school.

Halfway through her freshman year of high school, McLeod’s parents moved their family to Eugene, Ore.  McLeod transferred from a California performing arts school, where individuality was encouraged and her social awkwardness blended in, to what she described as a “preppy school.”

She spent her last three years of high school with few friends. “That was a very tough couple of years,” McLeod said. “I kind of felt there was something off.”

McLeod’s misdiagnosis of ADD neither explained her consistent struggle with processing numbers, nor considered her inability to pick up on social cues.

As a result, McLeod’s schools were unsure how they could help her. “Most of my childhood there were no accommodations at the schools,” McLeod explained.

McLeod was finally correctly identified as having Asperger’s, which coincided with dyscalculia, when she was unable to be hired for a job.

“It explained a lot,” she said of her diagnosis. “What went wrong in those interviews wasn’t necessarily my fault, just a failure to read the cues.” Finally being able to read about Asperger’s and dyscalculia explained McLeod’s issues, answered her questions and reassured her.

These days, McLeod’s hobbies include quilting and reading. McLeod’s favorite book, “Not in Front of the Children” by Marjorie Heins, is about the history of censorship. “I like it so much that I need to repair the cover,” she said.

She is a member of the Society for Creative Anachronism (SCA). “It’s a bunch of people who dress up in Medieval clothing and spend a weekend pretending they’re in Medieval times except with better sanitation,” she explained.

McLeod met her husband, Robin McLeod, at a SCA event, and the couple later had their honeymoon at a SCA retreat. 

McLeod said she receives surprised reactions when people learn she is married. “Their assumption on Asperger’s is that my trouble with reading social cues means that I’m an emotionless robot,” McLeod said.

The couple has been married for two years. Robin also has Asperger’s.

“My friends refer to us as a jack-sprout couple,” she said. “My sensory issues allow me to do stuff when he’s curled up in a ball complaining and vice versa.”

McLeod has a year-and-a-half left at the University of Oregon. She attends as a part-time student but works with financial aid to receive full-time student status benefits. “About 10 [credits] is my limit,” she said. “I stress out. I freak out. I go into the austist edge of my personality and drop one.”

Even though McLeod was unable to accept a disability that she didn’t know she had for the first 20 years of her life and some teachers failed to help her, McLeod loves to learn.

Her future plans include getting her master’s degree in library and information science after graduating from the University of Oregon. She wants to work as a librarian because she loves being surrounded by the knowledge found in books.

When McLeod looks back on her experiences with her disorders, she doesn’t feel upset that processing numbers and socializing is harder for her than most of her peers.

“It’s something I’ve lived with my entire life,” McLeod said. “Talking to other people about it, they all go ‘Well that must be horrifying’ and I just think, ‘No, it’s my life.’ ”