Autism in adults: the invisible disease

 Sometimes the problem is not diagnosed until adulthood, and the news can be both shock and relief.

After a particularly stressful day of work three years ago, Jo Bervoets, 51, a Belgian engineer, was on his way home when he thought the train station was noisier and more chaotic than usual. "I was already a little lost, immersed in my thoughts, before arriving at the station," says Bervoets. He was starting a new job, and he was worried about not being able to connect with his new colleagues. "I got on any train in the direction of Antwerp." When the train arrived at its station, Bervoets went to the stop to rent bicycles where he used to take one to get to his neighborhood, but there was none. Agged, he realized that he did not know how to return to his house. "I called my wife and, somehow, I managed to get there," says Bervoets. After three months in his new position, he was exhausted. "I came down." He says he still doesn't remember exactly what happened that day. Feeling too bad to go back to work the next day, Bervoets consulted with a psychiatrist, who decided to refer him to another specialist for some tests. After two months of evaluation, he received an official diagnosis: autism. "It was a surprise," says Bervoets. He and his wife, Els, did some research on the Internet and soon realized that the diagnosis explained some of their strange behaviors, such as their insistence that things were in a certain place and that they turned off the lights in a specific order. "Everything made sense quickly," he says. "It was a relief."

About autism

Autism is a developmental disorder that influences the way people interact and communicate with others during their lives. Experts are not sure what causes it, but there may be people with a genetic predisposition. It is more common among those people with sensory processing disorders, which make them abnormally sensitive to those things that affect any of the five senses, such as loud noises.

Before, autism was thought to be uncommon, but studies show that it affects one in 100 adults. Men are more likely to be autistic than women, although experts are not sure why. Some believe that women are less likely to inherit it, while others argue that autism occurs differently in women, which leads to fewer diagnoses. "It seems that there could be a 'female autistic phenomenon', which does not fit the profile usually associated with men and children on which evaluation tools are usually based," says Aurélie Baranger, director of Autism-Europe, an autism support group in Belgium. Symptoms include a wide range of disabilities, which appear in childhood, diagnosed from the age of four, on average. Doctors use the term "autism spectrum disorder" to cover all those diagnosed. At one end of the spectrum, the symptoms are so severe that those who do not receive adequate support are unable to communicate and need lifelong assistance. At the other end of the spectrum, the symptoms are so subtle that those who suffer from it can function like anyone else (perhaps with some strange habits), and their autism may not be detected until adulthood.

Social support

When children are diagnosed, they may receive social support for their integration into society in a more prepared way. There are not always services like these available to help newly diagnosed adults. "What follows the diagnosis varies a lot depending on the impact of the disorder," says Mirkovic. "Some will need psychotherapy to help them find compensation strategies, while others will have to work on their social skills or reorient themselves professionally." Some people are willing to go on with their lives. "I've heard people say, 'I'm like that,'" says Hens.

After being diagnosed, Bervoets was recommended to go to a speech therapist, but he stopped going because he didn't help him. "The more I thought about my behavior, the worse I felt," he says. "I try to understand why other people get angry sometimes, but I don't think much about whether there are more things I should change." His wife, Els, says "he has always been a type of person, and he is still that person. That doesn't change." "Now I am a philosopher," says Bervoets. "I am an engineer. I am a father. I think I'm a good husband. I am a lot of things. I'm also autistic, but focusing only on autism decreases one's view of the world."