By Maia Szalavitz, Jan. 22, 2013
There is more evidence that a minority of autistic children may eventually overcome their developmental issues, but experts caution that such recovery is rare.
It's long been the hope of parents of autistic children that the right care and support can reduce or even reverse some of the developmental problems associated with the condition. But while a recent study found that behavioral intervention programs are linked with normalization of some brain activity, the question of whether children can outgrow autism remains difficult to answer. Studies to date that have hinted at this possibility were plagued with lingering questions about whether the children who apparently shed their autism were properly diagnosed with the developmental disorder in the first place.
The new research, published in the Journal of Child Psychology and Psychiatry and led by Deborah Fein of the University of Connecticut, involved 34 people ages 8 to 21 who had been diagnosed with autism but no longer met criteria for the condition. The initial diagnosis had to be made in writing by a doctor or psychologist specializing in autism before the child turned five. And, to make sure they were studying severe cases, researchers included only children who had not spoken before 18 months or did not use phrases before age 2.
The authors compared these "optimal outcome" (OO) participants to 44 people of the same age, gender and IQ with high functioning autism or Asperger's Syndrome, who still had symptoms. The OO group was also compared to 34 similarly matched, typically developing people.
"I view it as really a landmark kind of study that validates an observation that clinicians and families have made for many years," says Geraldine Dawson, chief science officer for Autism Speaks and a long time researcher in the field.
"This is the first empirical study to seek out children with optimal outcomes and systematically test them in a variety of functioning domains, to see if they are truly indistinguishable from typically developing children," says Sally Ozonoff, professor of psychiatry at the University of California Davis Medical Center and author of an editorial that accompanied the study, "There have been no other studies of this kind in the past."
How did the scientists ensure that the participants no longer had measurable signs of autism? They tested the volunteers on various scales commonly used to diagnose the condition and videotaped the interviews. These were then reviewed by several experts who had to be in agreement about whether the participants no longer met criteria for the disorder, including factors such as their ability to attend regular classes without one-on-one assistance in school, no longer requiring social skills training classes, and having at least one typically developing friend. In addition, they were required to have an IQ over 77, which means that the results do not apply to autistic children who also have intellectual disability.
Participants could, however, be in limited special education classes or have academic or psychological problems such as attention deficit/hyperactivity disorder (ADHD) or depression, which could occur independently of autism, or may be connected with the condition. Depression, for example, could result from being bullied and from becoming more acutely aware of the pain of social isolation. ADHD and autism often occur together. "We weren't ruling out all other conditions," says Fein. "We're [now] looking at what residual problems they [may be] vulnerable to."
The study also found, not surprisingly, that having a higher IQ was associated with optimal outcomes. "It is possible that above average cognition allowed individuals with ASD to compensate," the authors write.
Fein is conducting a follow up study to pinpoint which interventions are likely to lead to these improved outcomes. All of the children in the study had received treatment, most of which used behavioral techniques to reward social and communicative behavior. "We're really talking about kids who started off with very significant disabilities and likely would not have had good outcomes
by any definition without intervention," Fein says.
But while the research suggests that some children do extremely well, it's also important not to give false hope or add to the guilt felt by some parents over their children's prognosis, the researchers stress. "This is generally a lifelong disability," says Fein. "I've seen thousands of children who had the best possible interventions continue to have significant intellectual disability and severe language deficits and we don't know how to remediate those things."
Autism advocates have other serious concerns about the research. "We don't think the idea that people 'outgrow' autism – or can be made through treatment to become non-autistic – is accurate," says Ari Ne'eman, president of the Autistic Self-Advocacy Network. Instead, he says study participants are likely "passing," or acting non-autistic in order to fit in. Inside, they may be experiencing the same urges to engage in repetitive behavior and endlessly talk about their obsessions, but they have learned to channel their intense drives into repressing this and behaving the way normal people expect.
"The idea of 'recovery' is a deeply damaging one," he says. "It sends a message that the only important objective [of] treatment is looking and acting normal, rather than anything to do
with the quality of life or lived experience of autistic adults.
Says Emily Willingham, a biologist, Forbes blogger and mother of an autistic child, "I think that the bottom line is, autism isn't just outward behavior – it is also internal processing and self management. What comes easily to someone who's not autistic might take herculean but unseen effort for an autistic person." For instance, many autistic people are extremely sensitive to physical touch, loud sounds and bright lights: regulating their emotional reactions to these experiences in an ordinary day without relying on their familiar and soothing routines such as retreating into silence or engaging in repetitive behaviors can be exhausting.
Fein agrees that the optimal outcome for autistic children isn't necessarily shedding their condition. "Who could have a better outcome than Temple Grandin" she says, citing the Colorado State professor and author who has written and spoken widely about her autism and was the subject of an HBO film. Grandin did not speak until age four, but her parents refused medical recommendations to institutionalize her, providing intensive care at home instead. "She's incredibly productive and brilliant, but still quite autistic," Fein says.
Indeed, Ozonoff worries that attempts to totally eliminate autistic behavior might also reduce autistic skills and talents, questioning whether the OO group genuinely has better outcomes in all areas. "I think we will have to see, through further study of this group, whether these children are not doing as well as they could have, if they had let flourish certain characteristics that are common in autism," says Ozonoff. For example, many autistic people have obsessive interests that allow them to focus more intensely – and this type of concentration may be what distinguishes a great computer programmer or musician from a merely good one. Attempting to suppress Grandin's interest in animal perception, for instance, might have prevented her from developing the humane slaughterhouse designs for which she is known.
"Most of us in the field certainly agree that the most important outcome is happiness, functionality, and high quality of life," Ozonoff says, "We do not mean to imply that OO (or recovery) is the only outcome worth working toward. We do not want to suggest that any other outcome is tragic and hopeless. There are many very special qualities and ways of being that autism can bring to individuals and to all of us in general."
The researchers also caution that most autistic people will continue to have symptoms: earlier studies, which may have included inaccurate diagnoses, have suggested that only about 3% to 25% children who receive a diagnosis will eventually lose it.
"For parents with young children with autism, the take-home message is that there is a really wide range of outcomes from very severe disability to pretty much indistinguishable from typical [development]," says Fein. "We have to live with that uncertainty and give the best interventions and parenting that we can and applaud all the gains a child makes." Ultimately, concerns about happiness and ability to cope are more important than questions about whether someone does or does not retain a diagnostic label.