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Adults with Asperger’s Syndrome often go undiagnosed

From: BOSTON SUNDAY GLOBE, boston.com/bostonglobe


by IRENE CULLEN, Globe Correspondent
SUNDAY, FEBRUARY 18, 2001

About one in 250 people has Asperger’s Syndrome, a neurological disorder that affects one’s ability to understand and respond to others’ thoughts and feelings, according to clinical psychologist Tony Attwood. Yet, because research conducted by Hans Asperger in 1944 did not receive widespread attention until the 1990s, many adults with the disorder remain undiagnosed.

Those with moderate to mild Asperger’s are most likely to have partners and children, and also are most able to hide their symptoms. Often, they only feel comfortable within the intimate relationships of a family, so others cannot see the struggles they and their families face.

“I call myself a translator between two different worlds,” said Attwood, who is coauthor of a book on adults with Asperger’s titled,”Making Friends and managing Feelings,” which is due out next year. “I explain the world of the neurotypical to the Asperger person, and the world of the Asperger to the neuotypical.”

These relationships resemble the blending of two cultures, Attwood said at an autumn workshop sponsored by Families of Adults Afflicted with Asperger’s Syndrome in Centerville.

Attwood’s upcoming book, written with Carol Gray, who invented “social stories”, a key tool in educating children with Asperger’s, takes a positive attitude toward working out the problems of adults with Asperger’s.

Asperger’s affects each person uniquely, Attwood said. It is composed of an array of qualities, in varying degrees. At the workshop, Attwood mapped out the characteristics, problems, and recommend strategies.

A profile of abilities common to Asperger’s includes:

* Codes of social conduct: “They are mind-myopic,” Attwood said. “They can’t know what other people are thinking or feeling. They are not badly brought up, or trying to upset you. They are just unaware of the social script. It is as if they were from another culture, and unaware of our norms.”
* Empathy: “When we look at empathy, it’s very complicated. In a relationship with a partner, that is crucial–knowing when you need emotional support,” Attwood said. Those with Asperger’s may have trouble understanding a partner’s feelings, and vise versa.
* Friendship skills: “They may find it hard to meet peers on an equal level, be uninterested in friendship, or rely on their spouse for advice on office politics and teamwork,” he said.
* Characterization of people: They “may see others in black and white, as either likable or not, or be poor judges of character and get taken advantage of. The spouse must take his or her care-taking role seriously,” he said.
* Art of conversation: Neurotypical people look for patterns when communicating verbally to find the general meaning, he said, but “Asperger’s people create their own pattern or, if they cannot, remember the whole message and may miss what is important.”

Attwood noted that Asperger’s may also be characterized by a strong desire for perfection, a special interest or talent, a fondness for routine, poor coordination, high cognitive skills, low organizational skills, and uneven processing of sensory input–being more or less sensitive than most.

Because neurotypical people can understand another person’s point of view, he said, they can switch strategies or compromise to get along. With less social intuition and a reduced ability to pick up their body’s internal physical signals associated with various feelings, people with Asperger’s may have trouble managing their emotions. “They have fewer social-repair mechanisms in their toolbox, are predisposed to mood swings, and can eventually explode,” Attwood said. “If they are not careful, anger is a major issue.”

To learn social skills, people with Asperger’s compensate for what they lack in intuition with their intellect, Attwood said. And sometimes that works.

“If the Asperger’s person wants that relationship to work, they will learn to do what they need to do to make it work. If they don’t, whatever you try to teach them, they will not put to use,” Attwood said.

Asperger people can use counseling effectively to help them learn about themselves, about how to compromise, to be open-minded, or to change their behavior to be more like others, he said.

What draws a neurotypical person and someone with Asperger’s together? Some strengths associated with Asperger’s include: strong ability in their career or special interest, attention to detail, conversation free of hidden meaning, advanced vocabulary or general knowledge, unique perspective in problem solving, exceptional memory, a sense of social justice, and praticality in issues of mortality and grief.

Partners may admire their intellect or abilities, have compassion for their limited social skills, believe that their character is due to childhood circumstances, share their interests, appreciate their fidelity or standing in the community, see them as creative or as a parent figure, and enjoy the degree of adulation they provide. For women, an Asperger’s man may seem like the strong, silent type, Attwood said.

People with Asperger’s, on the other hand, may be attracted to someone with a similar profile of abilities, a maternal woman or caregiver, or someone with strong opposite qualities such as flexiblity and compassion.

Men may get into a more tradtional marriage in which they play a dominent role, an arranged marriage, or relationship with someone from another culture. As for many couples, children create complications. But as it does for many parents, this can be one relationship that motivates people with Asperger’s to overcome their limitations to make it work. One vulnerability is a lack of understanding of the natural stages of childhood development, because their own experience was different. They may want to let their partner act as a go-between or a diplomat on certain issues involving the children.

People with Asperger’s also may feel a rivalry with children, because sacrificing their own needs does not come naturally. They may need to make an effort to show affection and emotioanl support, learn to tolerate some degree of messiness and noise, and try not to be too critical, Attwood said.

In social situations with friends and family, two-way misinterpretations of signals can occur, Attwood said. When the partner tries to talk about the situation, he or she may experience what Attwood called the Cassandra Phenomenon. In Greek mythology, Cassandra was given the gift of prophesy, but fated to have no one believe her.

“With Asperger’s, life is a stage,” Attwood said. “The curtain goes up while they are in public and down when they are at home. Because other people do not see the problem, they question your sanity–you are on your own. In some families, denial has held the family together for generations, and you want to bring down the scaffolding.”

As a result, the neurotypical partner may actually need more support than the one with Asperger’s. Therefore, contact with other partners through newsletters, a support group, or an Internet site is vital. “You cannot get this knowledge from professionals,” Attwood said. He also recommended having an independent social life and an occasional vacation apart.

Strengthening these unions requires vigilance and work–on both sides. Useful strategies include: acceptance of the diagnosis as a difference not a defect, motivation to change, family support, relationship counseling, emotional-management strategies, guidance in social skills, and open and effective communication.

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RESOURCES

Tony Attwood’s Web site is: http://www.tonyattwood.com

Families of Adults Afflicted with Asperger’s Syndrome
Centerville, Massachusetts.
Telephone: 508-775-1412
E-Mail: faaas@faaas.org
Web site: http://www.faaas.org

Asperger’s Association of New England (for all ages)
Newton Centre, Massachusetts
Telephone: 617-527-2894
E-Mail: info@aane.org
Web site: http://www.aane.org

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© Irene Cullen 2001. Reprinted with permission.

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