When almost all Asperger’s symptoms disappear
Swedish researchers followed a group of boys with Asperger syndrome over 20 years. Their lives took different directions. Just over one-fifth of these boys grew out of most of their symptoms.
Twenty per cent of a group of Swedish boys with Asperger syndrome studied over the course of two decades by researchers from Sahlgrenska Academy in Gothenburg grew out of most of their symptoms in adulthood, researchers reported this summer.
The boys were aged 11 on average when they were first enrolled in the study. Over the course of 20 years, the researchers checked in on the group twice, once when the boys were aged 20, on average, and again when they were aged 30. In this last study, they found significant differences in the quality of life for the 50 boys —now men—who were still involved in the research project.
The most important of these findings was that 11 of the 50 boys lived relatively ordinary lives.
A job, a partner, friends
The researchers interviewed the boys about their physical and mental health and their quality of life. They also examined how they lived, whether they had a job, a partner and friends.
Some had difficulty and needed a lot of help with daily life. Others had significantly fewer problems as 30-year-olds than as 11-year-olds. Twenty per cent were virtually symptom free.
Although those in this last group still had certain autistic traits, these characteristics didn’t stop them from living ordinary lives. They had a job, a partner, friends and their own homes.
Explanation remains elusive
Adam Helles, a psychologist who reported on the research in his PhD dissertation, said there were no differences in the severity of the Asperger’s symptoms in the boys when they first joined the study as eleven-year-olds. They had quite similar intelligence levels and backgrounds.
“Unfortunately, we have not been able to determine how much help they received individually during their childhoods and how this might have affected them,” he said.
But the group that showed the most improvements as adults had already begun to show slow improvements as teens.
Researchers cannot explain why these particular children showed such a positive development. But they can report that study participants who today would no longer be diagnosed as having Asperger’s also had fewer additional psychiatric problems than other study participants.
When chronic is not always chronic
Nevertheless, Helles believes that the results are not that surprising, in view of other research findings and what physicians themselves have experienced.
“Many studies have shown that between 15 and 25 per cent of people with mild autism diagnoses, like Asperger syndrome, did not meet the diagnostic criteria at follow-up. Nevertheless, we must remember that this is the most stable psychiatric diagnosis we have,” Helles said.
He added that researchers are finding that it’s more common for people to grow out of psychiatric diagnoses than previously thought. Both people with ADHD and Tourette’s syndrome may have such mild symptoms as adults that they no longer meet the clinical diagnosis of the disorder, he said.
Nevertheless, the results are contrary to the conventional wisdom that a diagnosis of Asperger syndrome is one that a person cannot “grow out of”.
Autism spectrum disorder
Asperger syndrome is considered part of an autism spectrum disorder. People with this diagnosis have problems understanding social codes and how other people think. They also often have narrow interests and exhibit repetitive behaviour.
People with the syndrome may have mild, moderate or severe symptoms.
Annette Dragsholt, of the Norwegian Autism Society, says people with this diagnosis often need a lot of support.
“Although some people with Asperger syndrome may be incredibly clever, they may also find it hard to organize their lives and undertake daily tasks, such as making purchases, washing dishes or changing their bed sheets,” she said.
She says that she has heard of individuals with Asperger's who are no longer considered to have the disorder as adults, but who in fact still need support with daily living.
She says that the association has been contacted by many individuals with autism spectrum syndrome and their families who are exhausted because the health care support system has failed them.
Risking other problems
Helles also think it is very important that children with Asperger’s get a diagnosis so that they can get help and support.
“We see that in the group we studied, 80 per cent had a stable diagnosis after 20 years. What would had happened to these people if they had not been given a diagnosis, we do not know,” he said.
A number of other studies show that people with neuropsychiatric disorders who do not receive diagnoses are at risk of other problems. Those with undiagnosed ADHD, for example, may be at higher risk of criminality and substance abuse. Those with undiagnosed Asperger's are at increased of other psychological problems, such as psychosis.
Read the Norwegian version of this article at forskning.no