Asperger's: Coming to an understanding about identity

LACONIA — David Stamps describes being overwhelmed by sensory data — bright lighting, conversations in a crowded room — and needing time to absorb it all.

That is a common trait among those meeting the profile for Asperger’s disorder, a mild and high-functioning form of autism.

“There is a set of questions they go through on assessments to determine if they are on the spectrum,” said Michele Cantara, the co-director of Adult Services with the Asperger/Autism Network, based in Watertown, Massachusetts.

Asperger’s is no longer the official term for those with Level 1 autism, according to Cantara, but it’s the term people still use to describe those with certain common characteristics.

“It’s a different way of thinking,” Cantara said. “They’re differently wired, and have a different way of perceiving the world. Many are sensitive to certain kinds of sensory input — certain smells or noises, or food textures.”

Cantara is the mother of a boy who eats only food with a certain consistency, she said.

“They may have difficulty with social language, understanding slang or idioms. They can take things to be very literal, and may not pick up on subtle, non-explicit descriptions. So someone may something satirically, and it’s meant to be humorous, but it’s taken badly because the person doesn’t know how to interpret it,” she said.

Stamps, a longtime Laconia resident, gives the example of a store clerk asking him how’s the weather, and his mind goes into overdrive to analyze the meteorological signs, not recognizing that it was a simple “How do you do?”

“They are intelligent,” Cantara said. “It’s not a question of cognitive ability.”

She said the Asperger/Autism Network, or AANE, tries to help them understand what their strengths are and how to build on them. “They have strengths that others do not have.”

The hardest thing is often overcoming the lack of a social filter. Those with Asperger’s often delve into subjects that interest them and can talk endlessly about what they know, not picking up on cues that the other person has tired of the subject. They also may not realize that, “in some situations, you don’t say exactly what you’re thinking,” Cantara said.

She said it isn’t true that those with Asperger’s lack empathy. “They feel deeply, but they just don’t express it,” she said. “They often feel more intensely, but don’t have the social communication skills to express it.”

Cantara also noted that many people with Asperger’s can become anxious about engaging with other people. They may avoid eye contact during a job interview because holding a gaze feels like an intrusion into their personal space, and that can become painful.

Karen Lean is an AANE board member who, at age 32, was diagnosed with Asperger’s. Now 42, she said she is concerned about what early diagnosis might mean to those growing up today.

“There’s a lot of focus on early intervention, but we have to be careful about thinking it would make them indistinguishable from their peers,” she said. “I feel that a lot of the younger people being diagnosed earlier have been hugely affected by being labeled and whatever level of special education they have been given, and there are huge concerns about being normal. It hurts my heart.”

Lean struggled with tactile sensitivity. Clothing tags and bedsheets made her very uncomfortable, and she took to wearing socks to bed to cushion against the sheets.

She also said the texture of food could be a problem.

“I’m not great at sports,” she said. “I’m clumsy, and have problems with auditory processing — distinguishing what I want to hear from the background noise.”

Following complex travel directions also proved to be difficult for her.

“What’s interesting is, if you’re overwhelmed by your senses, there’s no way to describe that to my parents or my caregivers. I trace all of the social disabilities to a processing issue.”

To deal with the overwhelming sensory data, people develop coping mechanisms — memorizing responses to give in certain situations, repeating a phrase over and over, not making eye contact, and spinning.

“It’s noted in research that spinning reduces anxiety,” Lean said.

If instructors try to teach those with Asperger’s to overcome the spinning, clapping, or other repetitive behavior, Lean worries that will do more harm than good.

She recalled, “As a girl, we were taught cultural things, so we’re not supposed to get angry, for instance. I did not get angry; I denied the problems and learned to internalize them, and I stuffed it all down, so by the time I was 8, I was very depressed. I remember kicking a boy, but was not generally a behavior problem. I was very compliant, which led me to being vulnerable to sexual abuse.”

She said, “Now I have learned some of those lessons and can protect myself. I’m in a good place now in my life. I’ve been on a journey since 2005, with growth in social awareness and the ability to advocate for myself.”

Lean got training in software testing, which opened doors for her.

“The message is to let people know what this experience is and how to create a world where we have an identity.”