Fortunately, scientists are starting to do those studies. For example, Catherine Lord, director of the Center for Autism and the Developing Brain at Weill Cornell Medical College, has been following a group of about 100 people with autism from the time they were diagnosed at age two through their early 20s. Study participants completed a large battery of tests every few years as children and again at age 18, and parents have been filling out questionnaires every year.
Like Kelley and her colleagues, Lord has found that a handful of participants lose their autism symptoms. Moreover, she says, “their eye contact, gestures, the way they hold their body, the way they talk about their friends”—behaviors that have long been thought to be difficult to improve on—are indistinguishable from those of typically developing adults. They are also functioning well in daily life, holding down part-time jobs while attending college. The researchers fittingly refer to this group as having a “very positive outcome.” A more sizable group is considered “more able” than the remaining adults in the sample—they have no cognitive impairment and are generally doing well academically, although they still have clear autism symptoms. A paper presenting these results is currently under consideration at a peer-reviewed journal.
Who Recovers and How?
Although Lord's study has not resolved the question of why some people with autism improve radically, it has found early signs that may help identify those who will. For example, at a very young age, individuals in the “very positive outcome” group had rapid gains in verbal skills and decreases in restricted and repetitive behaviors, such as flapping their hands and lining up toys. Parents whose children show these early improvements have reason to be hopeful about prognosis.
Interestingly, neither Lord nor Kelley found that those with the best outcomes received more behavioral treatment than the others, as one might expect. This finding does not mean that behavioral treatment is ineffective for autism—in fact, many studies suggest the opposite is true. Researchers simply do not yet know how the amount and type of treatment relate to prognosis. For example, applied behavioral analysis, which focuses on using reinforcement to help children learn and attend to another person, could be especially effective for some youngsters, whereas social skills training, which emphasizes capabilities such as holding a conversation and turn taking, might help others. Similarly, some children might require much more intensive intervention to make gains. The unpredictable effect of treatment could be related to underlying genetic differences; autism most likely has many variations, rather than a single genetic cause.
Until there are more definitive answers, Kelley says, “parents should do as much as they can for their individual child,” within their means. She firmly cautions parents against bankrupting themselves or running themselves emotionally ragged trying to get help for their child, because there may be factors leading to better outcomes that are completely outside parental control. “It may be a genetic variant—who knows?” Kelley remarks.
As exciting as these positive outcomes are, we do not yet know if they will last. As people with autism begin to face the challenges of adulthood, old symptoms might recur and new ones could surface. Studies of adults with autism have consistently found that many struggle to live independently, get and keep a job, and form friendships and romantic relationships. Lord and her colleagues want to keep following study participants to see if those in the “very positive outcome” group continue to flourish.
Of course, people with autism can thrive even if they don't recover. Lord recalls an adult with autism who put it well: “If I'm independent, have a good job and have relationships with other people, why am I not as good as someone else?” Researchers and clinicians alike should keep working to understand how all people who have autism can achieve the best possible outcome: a happy, fulfilling life.