The prevalence of Asperger’s disorder is estimated to be one in 250, although some place the figure as high as one in 100. But the vast majority of ‘Aspies’– as people with the disorder are affectionately known – have no idea they are affected. Inga Ting reports.

Asperger’s is a disorder on the autism spectrum, which refers to a dysfunction of parts of the brain and nervous system.

First described in the 1940s by Viennese pediatrician Hans Asperger, some believe it is a less severe form of autism. The American Psychiatric Association recognised it as a separate disorder in 1994.

“If you look at all the people who are on the autism spectrum, three quarters will fall into Asperger’s and Pervasive Developmental Disorders Not Otherwise Specified. A large percentage are invisible to most people,” says Dr Julie Peterson, a clinical psychologist who specialises in therapy for relationships affected by Asperger’s syndrome.

“They’ll know that they’re different in some way, their partners might know that they’re different, but they might not actually be diagnosed.”

Autism affects how information is received by the senses and stored in the brain.

“The fundamental disorder is the inability to relate in the ordinary way to people and situations from the beginning of life,” wrote Leo Kanner who first described the condition in 1943.

“Profound aloneness dominates all behaviour.”

However, unlike many autistic people, Aspies are not aloof and uninterested in others. They may lack the social and communication skills to do it, but most Aspies desperately want to fit in.

“People with Asperger’s would love to have the same relationships as everybody else, but they don’t always know how to be a good partner or have the social skills to be a good friend,” says Dr Rose Dixon, an academic and former special education teacher from the University of Wollongong.

While people with autism present language delays and intellectual disability, Asperger sufferers are diagnosed with average or above average intelligence.

“The partner who doesn’t have Asperger’s will often feel very emotionally deprived and unsupported,” says Dr Peterson.

“There’s often less intimacy and less emotional support because an individual with Asperger’s doesn’t understand the other’s thoughts and feelings. They tend to operate on a more intellectual than emotional level.”

Carol Grigg, was married to a man with Asperger’s for 20 years, an now runs Asperger Syndrome Partner Information Australia (ASPIA), a support group for people whose partners have Asperger’s disorder.

“I didn’t notice anything before we were married,” says Carol.

“It’s very frightening, really. A lot of us [in the support group] just shake our heads and think: ‘How didn’t we see this?’”

Carol and Glen met through her church community and after a “very proper” 18 months courtship, Carol, then 19, and Glen, 26, married.

From then on, the Grigg household became a system of routines.

Dinner could not just be made. There was an order to peeling the vegetables, cooking the meal and washing up afterwards.

Clothes had to be folded the right way, stacked in the right order and put away in the right place in the drawer. If Carol adjusted the air conditioning vents in the car, all hell would break loose.

“Routines and rituals are probably a compensation for the chaos they feel. It gives them a sense of control,” says Carol.

“He had little rituals for everything. It was like he had to do it like that or he didn’t know what to do.”

As their five children grew older, they learned they could never satisfy Glen’s rules and procedures. Resentment spread through the family and the once good-natured man became a figure of fear and dread for Carol.

“He would bully us. He’d raise his voice and become very intimidating. He had this look on his face that was very frightening. It carried with it the fear that he would follow through. I was never sure that he wasn’t going to hit me. He hit the children. I guess when you know he’s done that, then you’re always afraid.”

Out of 100 different characteristics of Asperger’s, experts say every person has around 15-20 of them.

In fact, the more successful among us display a higher incidence of autistic traits, like attention to detail and an excellent memory for facts.

People with Asperger’s are credited with some of the most remarkable accomplishments in art and science. Among the famous Aspies are Albert Einstein, Isaac Newton, Wolfgang Amadeus Mozart, Ludwig van Beethoven, Peter Swift, George Orwell and Andy Warhol.

Meanwhile, Bill Gates and Steven Spielberg are rumoured to be Aspies.

But while people with Asperger’s have many strengths, they also tend to share the social, communication and cognitive problems of people with classic autism.

Apsies may have difficulty interpreting non-literal language like irony, slang and sarcasm, or facial expression and gesture. They may have poor organisation skills, be clumsy or awkward and, like people with autistic disorder, may flick their fingers, flap their arms or rock back and forth in a repetitive way.

Aspies may also find it hard to make friends and empathise with others, take part in small talk or judge the appropriateness of their words and actions in a given social context.

“People with Asperger’s feel a lot of anxiety and when you’re anxious, you tend to strike out. They seem to have two aspects: very, very passive or aggressive and maybe even violent,” says Dr Dixon.

Unsurprisingly, depression and anxiety are more prevalent among people with Asperger’s and their families.

“[People with Asperger’s are] not able to view the social world as easily. They have to work very hard to understand. They’re always living under stress,” says Dr Peterson.

“You take that and put it on top of normal daily living and the individuals with Asperger’s are working a lot harder. And for their partners and family members, it’s not easy either. There’s a lot of misunderstanding and confusion.

“And in all couples that experience a lot of distress, you move towards abuse.”

One of the difficulties of spotting an Aspie is that no two Aspies are alike.

As with all autism spectrum disorders, there is enormous variation between people with Asperger’s. Characteristics present themselves in a wide array of combinations and not every characteristic will appear in every person.

Different characteristics may also appear in the same person, but in different contexts.

Susan and Tom were married 15 years before Tom was diagnosed in 2004 with Asperger’s disorder.

Susan also discovered that their eight-year-old son Peter, had Asperger’s.

“Children are a random chaos generator that can tip them over the edge and make a lot more traits become manifest,” says Susan.

“I don’t know how to explain how bizarre it is.”

As Peter grew older he became violent. Schoolteachers recommended more discipline which only made Tom’s behaviour escalate.

“I didn’t know who to talk to about it because I was worried that people would come in from a domestic violence point of view,” says Susan.

Susan herself was a domestic violence counsellor at the time.

Exhausted, frightened and confused, Susan says she kept thinking, “I’m going mad.”

This kind of thought pattern, the ‘Cassandra phenomenonm,’ is common among the partners and family members of an individual with Asperger’s syndrome.

The name comes from the tragic figure of Greek mythology, Cassandra, who had the ability to see the future, but was powerless to either change it or convince others of her knowledge.

Like Cassandra, partners and family members who often cannot persuade others of what they are going through, frequently become bewildered, depressed and profoundly isolated.

“I tried for so many years to get someone to believe me or understand but I just didn’t succeed. It was very frustrating, very isolating,” says Carol.

“You feel like you’re in this private world that seems different to what you think is normal, but the longer you’re in it, the harder it is to tell.”

“After about 16 years, I started to think: ‘Maybe it’s me that’s got it wrong, maybe I’m the one with the problem’. No one at church believed me. They all thought he was the most wonderful man. I began to collapse emotionally.”

But while a diagnosis can go some way towards reassuring partners and providing much-needed validation, it is by no means a solution for a family in crisis.

Carol left her husband Glen, three years after the diagnosis when she realised that getting a diagnoses would not make the problem go away.

“I think you live in hope that one day you’ll find the answer and be able to work out where to go. But it doesn’t happen like that. You might be able to make it better with some professional help but it’s very dependent on the person with Asperger’s being willing and able to see that there’s a problem and they’re contributing to it,” says Carol.

“I reached the point of saying, I have to leave. We’re destroying our children.”

Dr Peterson believes couples achieve the best outcomes by learning as much as they can about the disorder and seeking professional help from an experienced therapist. She says counselling often involves finding a common language and learning new ways to communicate.

“One of the most effective areas we can work on is helping them understand each other better and meet each other’s needs,” she says.

“If, for example, the person with Asperger’s is interpreting the world in a very literal and concrete way, and their partner is being quite emotional and reading the world in a neurotypical way, each person has to see that two different languages are being used, and that both languages are very valid.”

But even when both partners are willing and motivated, the nature of the disorder means it is frequently the person without Asperger’s who must change their expectations of the relationship.

“They have to accept at a fairly deep level that the relationship will never be what they expected in the beginning. It’s going to be on different grounds altogether,” says Carol.

Five years on and living in a new home with her children, Carol is much happier – athough she remains deeply entrenched in the world of Asperger’s.

“I can’t just throw away 20 years of my life. It’s made me what I am. That’s why I feel so passionately about the support group. I don’t want others to go through what I had to,” says Carol.

“For me, finding someone else who actually knew what the nightmare felt like – who was living with the same confusion – was such an amazing, validating experience. You realise you’re not alone.”