Can You Really Recover From Autism?

By Karen Weintraub
Guest Contributor

Until this week, autism researchers generally steered clear of the word “recovery.” If tests showed that someone diagnosed with autism no longer had symptoms, doctors assumed they never really had the condition in the first place.

Now, a new study confirms that some children who once had the communication difficulties, social challenges and repetitive behaviors of autism can reach a point where they are virtually indistinguishable from their more typical peers.

hepingting/flickr

hepingting/flickr

“For the parents of young kids this is not a likely outcome, but it’s a possibility,” said study author Deborah Fein, a professor of psychology and of pediatrics at the University of Connecticut.

The study, published in the February issue of The Journal of Child Psychiatry and Psychology, does not indicate what percentage of children are likely to recover from autism, though Fein said she thinks it is now a small minority of children.

For families with a relatively new autism diagnosis, the fact that recovery is possible offers hope at a time when many are overwhelmed with anxiety.

For families whose children are older and still have symptoms, though, it may suggest that this goal is now out of reach. Most of the children who are going to improve dramatically do so within the first few years of beginning intense behavioral therapy, Fein said.

The study didn’t detail why some children improve and others do not. But the new research does support the idea that early, intensive and well-done behavioral therapy is crucial, regardless of whether the child eventually loses an autism diagnosis. Still, parents shouldn’t feel guilty if their older child hasn’t lost the diagnosis, Fein said. Biology may determine which children grow out of autism and which don’t.

“I’ve seen hundreds, possibly thousands of kids who got excellent therapy, excellent parenting and they all made progress, but this is a minority that reached this stage,” Fein said about those who no longer met the criteria for autism. “If the parent has a child who did not reach this outcome, it doesn’t mean they did anything wrong.”

“It really fuels the urgency for early diagnosis and early intervention,” said Sally Ozonoff, professor-in-residence at the UC Davis MIND Institute, which specializes in autism research.

But entirely getting rid of autistic characteristics may not be the right goal for families, according to Ozonoff, and Michelle Dawson, an autism researcher at the University of Montreal who is also autistic.

Both Dawson and Ozonoff reject the notion that people will be better off if they are no longer autistic. Some autistic traits provide distinct advantages in adulthood, said Dawson, whose research has shown that most people with autism have average to well-above-average IQ’s.

Because successful outcomes were never seen as a possibility for a child with autism, there has been almost no research into what “success” might look like or how to get there.

Dawson said in an e-mail that even in Fein’s study, having any autistic trait is defined as “suboptimal.” “Even having atypical friends is suboptimal,” according to the study, Dawson said. “This should give anyone pause, with respect to both science and ethics.”

The study looked at three groups of people, ages 8 to 22: one group had developed typically, one group had autism and the third, dubbed the “optimal outcome” group, was made up of people once diagnosed with autism who no longer met the criteria.

Earlier studies have left doubts about whether children who recovered ever had autism in the first place. Fein and her colleagues took pains to confirm the validity of the initial diagnosis and the change. While participants in previous studies might have improved just a little – from being only slightly autistic to being mostly typical – the people in the “optimal outcome” group were shown to have changed substantially rather than incrementally.

In earlier research, Fein said she has found that the children most likely to change are those who show the fewest motor control problems in early childhood. Her 40 years of clinical experience, Fein said, leads her to believe that most children who are going to achieve “optimal outcomes” will show substantial progress by around age 8.

Autism varies significantly from person-to-person, which is why it is referred to as a “spectrum,” but it is defined by deficits in social interactions and communications, and by repetitive behaviors like rocking, arm flapping or obsessing over specific topics. Many people with autism also have physical problems, such as epilepsy, digestive issues, lack of coordination, and mood disorders like anxiety.

Fein’s study looked only at the three central characteristics; it’s possible, according to the research, that participants still had anxiety or other mood, attention or executive function issues even though they are no longer autistic.

In a related study, Fein and colleagues show that even people considered to have had an “optimal outcome” still perform worse than neurotypical peers on tests where they are required to generalize information.

Fein said she plans now to look at brain scans of people in the “optimal outcomes” group to see if their brains “normalized” when their behavior did, or somehow compensated for the autism.

Researchers will also now pay more attention to the recovery process, Ozonoff said, trying to figure out ways to help many more children improve or recover.

Ozonoff said she sees the new research as a paradigm-shifter for scientists who study autism. Researchers have always carefully avoided talking about “recovery” from autism, and even this week the word caught in her throat. Now, she said she looks forward to the day when she can “laugh and say ‘remember when we didn’t like to use the word recovery’?”

Karen Weintraub, a Cambridge-based health/science journalist, is the co-author of “The Autism Revolution.”

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  • Aiyana Bailin

    I find it shocking that the article made an excellent point in the middle and completely failed to follow it up. To quote:

    “Both Dawson and Ozonoff reject the notion that people will be better
    off if they are no longer autistic. Some autistic traits provide distinct advantages in adulthood… Because successful outcomes were never seen as a possibility for a child with autism, there has been almost no research into what “success” might look like or how to get there.”

    As someone who works closely with many autistic adults and teens, I must stress how critical it is to redefine what we mean by “optimal outcomes” for children with autism diagnoses. Virtually none of the adults or teens on the spectrum that I have spoken with list “appearing normal” or “being cured of autism” among their goals, and many reject those notions with the same hostility that most homosexuals feel when people talk about “curing” them.

    Instead, people on the spectrum desire community support, the freedom to live independently, and most of all, a reduction in the stigma surrounding the fact that their brains work differently from the average person’s. (A good example of autistic priorities is given here: https://www.youtube.com/watch?v=k-8QLWnYqoY and here: http://blogs.plos.org/neurotribes/2012/04/02/autism-awareness-is-not-enough-heres-how-to-change-the-world/). Many of them also cite a childhood full of behavioral interventions and constant clinical evaluations as a major source of anxiety, depression, and loss of confidence.

    While I understand the need to address problematic behaviors like violence and self-endangerment as early as possible, it is important that we realize what impression we are giving to our children if we spend their entire childhood focused solely on correcting their perceived deficits rather than embracing their strengths, accepting that their lives likely will never be — and perhaps should not be — “normal,” and instead helping them to work with their differences rather than against them. I know many college students and adults with autism diagnoses (ranging from medical professionals to those who require daily living assistance) who lead happy and fulfilling lives. Let’s stop focusing on whether or not autism can be “cured” and start researching how people can live well with autism.

  • silvermaran

    http://www.youtube.com/watch?v=ubSnxCr7kz8&feature=share Stop the Crimes Against Humanity in ALL syndromes, psych, cancers and treat the TRUTH before it is too late.

  • silvermaran

    We have many LLMD’s treating our kids to wellness. You do NOT have to be sujected to criminals killing your kids in denial of real treatment for the stealth infections they blessed you with….Stop the LIES.
    http://www.youtube.com/watch?feature=player_embedded&v=yOno_2m_8LY
    Seronegative infections have been around since AIDS first began….and they knew what really caused it and did nothing to stop it…YOU can….

  • Treating Autism

    Our charity, Treating Autism, has close to a thousand member families. Many of them have seen incredible changes in their children with ASD diagnoses when using appropriate interventions. Some of these children have completely recovered, and no one, regardless of their expertise in autism, would see any traces of their former diagnoses. This type of recovery is still fairly rare, although in a survey conducted of our members, some of whom are adults with ASD treating themselves, 95% of respondents said that interventions had proven beneficial, and 24% responded that biomedical treatments had been ‘life-changing’. We know that the sort of ‘optimal outcomes’ discussed in Fein’s research would be a lot more common if people with autism and their families were given the sorts of support–medical and otherwise–that they need, and if professionals were basing their actions on the fact that ASD is not necessarily a life-long diagnosis. Sadly, the vast majority of these families receive little to no appropriate help. We hope, for the sake of our children, many of whom are now adults, that this study and other current research will be taken seriously by the professionals who, by perpetuating the erroneous belief autism is by definition a lifelong disorder, do a disservice to those who might benefit from interventions aimed at addressing core symptoms of autism.

    Treating Autism Trustees

  • DJ

    be careful not to confuse autism with Asperger’s syndrome. While there is overlap, these are not the same thing.

    • Melissa

      Once the new DSM arrives, there won’t be an Asperger’s as an option for diagnosis, but your point remains true. There should also be a distinction between high functioning and low functioning autism at the initial diagnosis. A child with little-to-no language delay is going to have a much easier time communicating with the people administering the early intervention, and therefore are much more likely to have outcomes that could be classified as “recovery.”

  • http://www.facebook.com/futo.buddy Futo Buddy

    whats clear from all of this is we really dont understand what autism is and what causes it maybe the brain scans will help with that

  • Nancy Sullivan

    For all you parents of autistic children, you might be interested in reading Dr. Natasha Campbell-McBride’s book, Gut and Psychology Syndrome. She used mostly diet to treat her autistic son. She is a doctor in Scotland and has trained some gut and psychology syndrome practitioners in this country. I am a nutritional therapist who took her course. The book really says it all, and it is the first thing she gives to the parents of autistic children who come to her.

    • KimberlyAUSTINTX

      The gut-brain connection is so important for ppl to understand. The majority of my daughter’s recovery was diet alone! She had Autism pretty severe, basically all the stimming – flapping, spinning, tantrums, playing inappropriately with toys, staring out windows, non-verbal – list goes on…. took her off milk first and her eczema went away and she started making eye contact and start wanting to communicate and talk. She came around slowly with the assistance of Easter Seals. I then took her off gluten and she slowly began to lose all those symptoms or traits that once defined her as “Autistic.” She was diagnosed at 2 and she is soon to be 8. She going to a mainstream school. She is bright, funny and no one would ever know that she suffered so badly when she was younger. Thanks Nancy for getting the word out about this book.

  • kc2

    People interested in psychotherapeutic help for children on the spectrum should read Beyond Their World and Ours, by Karen Zelan

  • Marie

    Interesting study (and article) which reflects our experience. We have one son who, according to all tests, met EVERY criteria for autism. As a result, we did some pretty intensive early intervention, mostly because we didn’t know what else to do.

    As the article indicated, he did have strong fine and gross motor control. Now six and a half, he is an incredibly socially aware child and shows few, if any, of the signs. We are not sure exactly what caused the turnaround (which started to be noticeable around age 4). We did a combination of early intervention and the school was very supportive.

    The upside is that this expanded our view of the gifts that children bring, even when they are labeled as outliers by society.

    Thanks for the article.

  • Mike

    I think scientist should also look into mimicking some so called ‘autistic traits’ to have a better understanding of how an autistic person brain tunes into specific ideas and techniques which often lead to a savant-esk mastery of the skill.