Paula Ong will chat away about her childhood, dropping out of college and the 13 jobs she has held in the past two decades. But ask how she “feels” about living with Asperger’s syndrome and she will give you a lengthy pause.
“Feels” is not a concept she can verbalize clearly.
“Feeling is abstract and at times broad,” she explains. “Many people with Asperger’s syndrome have a hard time grasping and verbalizing abstractness.”
Asperger’s syndrome is a developmental disorder on the autism spectrum that causes impairment in social and communication skills. It is sometimes thought of as being a high functioning form of autism because “Aspies,” as they call themselves, are people of average or higher intellectual level.
Symptoms include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior; difficulty interacting successfully with peers; problems with non-verbal communication; and uncoordinated motor movements. They also may have limited interests or an unusual preoccupation with a particular subject to the exclusion of other activities.
“They are high on systemizing and low on empathizing,” says Katherine Loveland, PhD, professor of psychiatry and behavioral sciences at The University of Texas Health Science Center at Houston (UTHealth) Medical School, which has just opened a new clinic for patients with Asperger’s. Changing Lives through Autism Spectrum Services (CLASS) will serve intellectually able people age 16 and older with Asperger’s or another autism spectrum disorder. “Systemizing is the kind of thinking we do when we organize things, solve concrete problems and think in terms of how things work as opposed to empathizing, where we are attuned to and concerned with the feelings of other people.”
It wasn’t until 1992 that Asperger’s was recognized as a distinct disorder by the World Health Organization and not until 1994 that it was included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the American Psychiatric Association’s diagnostic reference book.
So like many people who have Asperger’s syndrome, Ong’s ability to put a name to her idiosyncrasies didn’t come until she was well into adulthood. Ong, 41, was diagnosed with Asperger’s in 2006 during treatment for a mood disorder and attention deficit hyperactivity disorder (ADHD). Although current DSM criteria do not permit the diagnosis of ADHD together with an autism spectrum disorder, recent research including a major study at UTHealth has revealed that a majority of people with autism spectrum disorders have some form of ADHD as well.
“We’re only now getting good at detecting Asperger’s in young people and there is a cohort of adults from when we were not so good at detecting it,” says Loveland, director of the CLASS Clinic.
“Either it’s never been diagnosed or it’s been misdiagnosed,” Loveland says. “One of the reasons it might be missed is because they are intellectually able. They are bright and verbal and good at school work, but they have continuing social problems, such as forming relationships with peers, being accepted, and dealing with emotions.”
Ong is a good example. She is sharp with a keen sense of humor. She made As and Bs in school and excelled in history and science, the subjects that most interested her. She admits she wasn’t as good in math, which led to her decision to drop out of college, a decision her parents weren’t happy about. Her mother has degrees in journalism and business; her father is an aerospace engineer.
“My mom always suspected that I had something like autism despite what the schools told her when I was growing up,” says Ong, whose good grades disguised the severity of her disorder.
As she grew older, Asperger’s syndrome affected Ong’s ability to sustain a career. The longest job she held was from 1997 to 2006. She began the position working in a parking booth and the limited contact with customers played to her advantage. But when parking tickets went electronic and the booths went away, she had to interact more with customers and sometimes it didn’t go well. She was written up after chasing down a car and banging on its rear window because the driver followed another car through the gate arm without paying.
“Some Asperger’s people don’t think and feel at the same time,” she says. “With some Aspies, you think and then you feel or you feel and then you think. My thinking is visual. I’m impulsive. Customer service is not my thing despite the fact I’ve been doing it for more than 20 years. The only time my experience in customer relations comes in handy is when I’m ‘translating’ for other people with Asperger’s. I have to know body language and stuff and I think I have a good idea of what others are expressing.”
Ong has been under a doctor’s care since she was in her mid-20s for stress management and mood disorders, which includes depression.
“There are emotional issues… if people think you are odd, it affects how they treat you, and so you have a lot of stress,” Loveland says. “People on the autism spectrum have more trouble regulating their emotions. Their resources for coping with stress are less developed and they can become upset very easily. Over time, the stress and the emotional upset can lead to anxiety and depression. That’s not good for the developing brain and as a result, they often develop secondary psychopathologies.”
Specialists such as those at the UTHealth psychiatry CLASS Clinic can determine whether the problems an individual is experiencing are related to Asperger’s syndrome. Co-existing conditions such as depression and anxiety can be treated with medication or psychotherapy.
“I really feel there is an unmet need in the community. There are people out there who are struggling and need a place to go. We want people to access the support they need,” Loveland says. “They will be able to meet people on a similar journey and know they are not alone. Group and individual training will help them develop skills that they need to feel successful in stressful situations.”
Ong has learned many skills, including using her favorite stuffed animal, Boo, to help her through stressful situations.
“I had to make presentations about Asperger’s in Corpus Christi and Fort Worth and Boo came. I didn’t know any of these people or what they would think of us. Boo takes away my fears. He handles my emotional burden,” Ong says.