New Study Suggests Autism Can be ‘Outgrown’

  • Share
  • Read Later
Getty Images

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.”

MORE: Behavior Therapy Normalizes Brains of Autistic Children

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.”

MORE: New Gene Variants Linked to Autism

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.”

MORE: Autism Rises: More Children Than Ever Have Autism, but Is the Increase Real?

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.

MORE: Brain Imaging Could Detect Autism in Infants as Young as Six Months

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.

MORE: What Genius and Autism Have in Common

“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.

MORE: The First Drug that Could Ease Social Withdrawal in Autism

18 comments
DaeGarcia
DaeGarcia

I am so frustrated and need all the help I can get from experts. I have a 10 year old son who has been showing autistic signs since he was a baby but yet, has not been diagnosed with it. His first year of life, he was very quiet, will not cry for food and will be an absolute angel (I read that is a sign of an autistic baby). He started walking at 11 months old. He did not start speaking until around 4 years old. Prior to that age, he would mumble a lot. At the age of 2, I noticed he was not speaking like other kids of his age so I brought it up to his doctor. He was then referred to a Speech Therapist where he received therapies twice per week. They did a lot of test on him and found out he has developmental delay (communication, cognitive and social), He was placed in special education while he was attending child care on base ( I am military). A special education teacher will come to the center to assist him with his problems at the time. He started K-der at the age of 5 and an IEP was initiated by the school. He has many behavioral issues, plus the rest I mentioned above. 2 years ago a psychology diagnosed him with ADHD, so now I have been dealing with testing so many different type of medication (concerta, aderol and strett?) which seems not to work on him. It is very frustrated that I have been going through so much with my child and a correct diagnose can't be given in order for him to receive the proper intervention. In reference to his signs; he has ALL of the speech and language difficulties; most of the nonverbal communication difficulties found in autism; most of the inflexibility symptoms in autism and about 50% of the signs of social difficulties in autism. Recently, he had a psychological evaluation and his results were: ADHD, mild anxiety, problems with oral communication, IQ of 78 & GAF: 58. The psychologist ruled out the autism spectrum for now because he did not want to give him a false diagnose. He specifically told me he thinks he has autism but he wants to be 100% sure he does so when he gets a new evaluation in a year, then he could be sure that he has it, once his ADHD gets controlled with the right medication. I am telling you that my son has autism and no one is listening to me. In addition to that, he is clueless as to what is he learning at school. He does not understand the material, regardless of how many times  you teach him (I do it at home every day and for hours). He is frustrated at the fact that I get disappointed because he cant get it right. He is so unaware of the consequences of bad grades. His current grades are 3 D's (72, 70, 70) and 1 F (67). The grading scale in this county are 69 and below is F; 70-72 is D; 73-83 C; 84-89 is B and 90-100 is A. His common sense is not there, he has a hard time trying to explain what he wants to say. He uses verbs in  the wrong tense, he is obsessed with the weather and sports such as football. He is a very polite kid. He tries and tries hard to understand but he just don't get it. His anxiety comes from not understanding the "normal" world and the frustration of not knowing what's instructed by his teachers. I want to know how to treat him, what to do to help him, understand him, provide him the right therapies...but I cant without the proper diagnose that I seem to never obtain or obtain it fast enough to intervene and make his lifestyle an easier and better one. Please HELP!!!!!

-A very worried mother!

IanMurdoch
IanMurdoch

I also fail to see how people can observe the wide spectrum that is ASD, with it being so large, you don't know how different people will react to changes, people can read things on ASD but unless they meet a 'patient' they will never understand how there mind comprehends things, that is why i want to become a photographer,i see things that some people might not see as a piece of art or something that will look good once edited. no one will ever understand how the mind of a autistic works 

IanMurdoch
IanMurdoch

I can understand this i have been diagnosed with high functioning autism, and i have noticed a serious change in my behavior  and attitude, from when i was younger,i have always though you can out grow autism, if you break your self away form daily habits and times, i think this is a leap forward in the study's in autism, 

diannedaniels121
diannedaniels121

I am glad to be reading articles such as this. They can give hope. I have been saying this for years based on my own observations only. I am a social worker who has worked extensively with this population, but before this I had a child who met criteria for this diagnosis. I didn't know it at the time since she was born in 1988 and the diagnosis for Asperger's did not yet exist. What I knew at the time soon after her birth was that something was not right and it was up to me as her parent to provide as much stimulation, exposure to social situations and to teach her acceptable social skills as possible. I was fortunate at the time to live next door to a retired teacher of students with autism. She was an invaluable source of information and ideas. I held her tight as she screamed and arched her back because she didn't like to be held or touched. Although my daughter preferred not to interact with peers, I knew that if she was to ever learn appropriate social skills she had to be involved in team activities. So we did this. She had low muscle tone so we worked on that. She had significant sensory issues so we addressed these. I worried as I watched her spin for hours. My lovely neighbor told me, "Let her. She needs to develop those spatial skills". When parents would reprimand me for my daughter's rude behavior (she wouldn't look at people or speak to anyone outside of her family), I would talk endlessly to her why she needed to learn these behaviors and we role played. She read the comics in both morning and afternoon newspapers starting at the age of 5 and made her dad painfully explain each frame. When we finally asked her why she bothered to read these, she answered "because I see you and daddy laugh at these and I think if I keep reading them some day I"ll get it too and laugh". So we continued to read. I could go on and on, but the end result is that she is a beautiful, well rounded successful adult now. Almost no one would ever suspect her extreme beginnings. Yes, she still possesses some characteristic idiosyncrasies -still pretty literal, can perseverate, and fairly rule bound, etc. - but these characteristics are within the "normal" range now. She has many friends. She is very social now and well liked. She is athletic and plays sports. She is an outstanding musician. She completed an undergrad degree in engineering physics and is about to complete a master's. My husband and I could never have imagined such accomplishment from the way she began life. I am a total believer that intense intervention at a very early age CAN help the brain maybe rewire and develop necessary neuropathways to give these individuals a level playing field and to help these individuals become successful. I am sure there are many more stories like my daughter's out there.

MommaData
MommaData

Thanks for describing this important study in such clear detail - wish parents read more articles like this about the latest studies. 

Treating_Autism
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

Shadro
Shadro

You know, people can be offended if you say 'child with autism' and others can be offended by 'autistic child.' As an overgrown child with autism I'm fine with being called autistic. Autism is difficult to separate from my personality. In fact, it shapes it. I don't actually want to be cured but I'm well aware of how impairing it is. That said, I was once very high functioning and then I pushed myself too far and I actually regressed. Funny thing is I'm more social now yet I'm more limited because of how far back I went. My severe sensory issues hold me back a lot and I'm yet again stuck in routines and fearing change and holed up in my bedroom with my special interests. But I'm happy to just accept myself, continue to build up skills (again), work towards some sort of employment and not try and be like those typical developing people. I feel liberated that I don't have to deal with so much social drama or any other issue they go through that I don't have to. 
But I really just wanted to say though things get better if you keep pushing the child with autism or they keep pushing themselves over their limits they might just regress. And I know people who have lost speech and become so low functioning they had now live in institutions they regressed so much. The second regression I call it, despite going through a third.
But yes, keep building those skills, minimising those symptoms that cause the child anguish and limit their life experiences, just don't push them too hard, and don't make them feel like autism is such a horrible thing. Because some of us learn to embrace it. We need to. Otherwise we'll just crash and burn and get stuck in depression. I'd rather be positive about this disorder so many people think is a life sentence. I'm not some empty vessel doing a bunch of repetitive movements for no reason, that must be saved and taught to be like my perfect neurotypical siblings or peers. I'm intelligent. I've got goals. And my opinions are definitely my own. And there are a lot of people like me and have the potential to be like me. Oh God, that makes me sound egotistical. I just mean your kid could one day be high functioning and brilliant and actually live independently (or close enough) and pursue their talents that was really encouraged by having an intense focus, a highly detailed memory and the ability to get an expert amount of knowledge for their special interest in such a short amount of time.
If you think I'm saying this because I'm HF...well I haven't always been. I was worried about by parents and teachers. They thought I had hardly a future. I didn't talk to people til I was 14 and didn't really have a proper conversation until I was 24 or 25. Then I got on ADHD meds and made a dramatic improvement in social skills, although I'm still not anywhere near an NT average. But as a kid I did poorly in school except in art and a few other topics in math and maybe english. Note: I didn't say I did better at those subjects overall.  I had no friends or interest in them. I gained self-help skills very slowly. I'm completely different now. People make the mistake of thinking I was gifted and brilliant in school because of how I am now. Neh. I was anti-gifted. Possibly an artistic savant because that's really the only skill I had. And now I'm focusing on my interests and talents that come out of those interests to make some sort of career. At 27 I'm not going to be cured of autism any time soon so I'm not getting down about it or envying NT's because my life is pretty damn good. Sure I have a depressive disorder, I have severe anxiety, epilepsy, other health issues, plus I have some mild O.D.D. Oh yeah and ADHD. But I take on the challenges as they come and see both autism and ADHD as positive things, otherwise I seriously would fall into a deep dark depression, or might just regress again. 
I hope people understand this. I am well aware of the impairments in both HFA and LFA, and perhaps those with milder symptoms or early intervention can learn enough skills that they don't seem autistic, but like it was said in the article, inside they are. 

DawneMorgan
DawneMorgan

Yes, people first language please, "children with autism", as the individual comes first and diagnosis-disability second.  I would use great caution with the words "out grow" as ASD is a complex disorder, and like diabetes or asthma, if managed correctly and with care one can be 'symptom' free and still have the disorder. I work with individuals with ASD and with great therapeutic efforts some kiddos can 'appear' typical, so testing and assessments measure that, so is that in fact outgrowing it? no, sits imply ASD at a more functional level.

KellyFogwell
KellyFogwell

Is it not common practice to say "children with autism" rather than "autistic children?"

jpitney
jpitney

The headline is misleading.  Nowhere does the study use the term "outgrow," and its lead author told the New York Times:  "These people did not just grow out of their autism. I have been treating children for 40 years and never seen improvements like this unless therapists and parents put in years of work.”

carolglenn1492
carolglenn1492

Thank you so very much. This gave me such hope for my son. Thank you.

NaftetaSheta
NaftetaSheta

@diannedaniels121 - I came across this article after looking for proof on my theory that a lot of children with autism are outgrowing it now.  I just finished an IEP meeting with my son's school.  He was diagnosed four years ago and has had a lot of positive development since.  His teachers are questioning whether or not his original diagnoses still stands.  I had the pleasure of telling the school psychologist that she didn't know him when he was younger.  She couldn't see how socially withdrawn he was and how much he would shut down. Now, he is engaged and lively and talks to everyone.  He is known as the mathematician at his school and makes me proud everyday.  I am convinced that he has outgrown the weaknesses autism presented for him but managed to keep the strengths. I'm not sure if I can say he doesn't have it anymore but it doesn't matter because I never looked at it as a disability or disease. It is a part of him and makes him the unique individual he is. He's only 9 but I look forward to all I know he will accomplish in his life.  Thank you for sharing your story.  It was a beautiful read.

Shadro
Shadro

@Treating_Autism The autistic brain develops differently than typical developing brains. Neuroscientists have found this. They're actually trying to reverse this. Maybe people can lose enough of the symptoms to seem to recover from autism but the structure of their brain is still autistic. Autism is only autism when the person has a significant amount of impairments that makes it hard to live their day to day lives. But adult regression is real. I wonder, if the autism is gone then is the special skills they develop from intense interests too? See, that's why I don't want to recover. I can still make it in this world and be autistic. I don't want to just become normal to make people happy. What about my happiness? I've tried the whole social thing and I never really liked it but I did go to a lot of exhausting effort. Now I just do it at my own pace when I want to, and do much much better. 
Like the article says you can hide your autism symptoms when mild enough. I remember those days...But internally you're still autistic. Even when you lose your diagnosis. 

AnyazelieM.Zéphyaire
AnyazelieM.Zéphyaire

@DawneMorgan Speaking as an autistic person, while each individual has a right to be called according to what they feel most comfortable with, the insistence of so-called "people first language" almost always comes at the insistence of people who are not themselves autistic.  When you are talking about the autistic community, please avoid person first language, as it is frequently taken as an insult, suggesting that being autistic is akin to having a disease.  The forced political correctness only conceals an underlying attitude that equates autism to pathology, and erases the experiences of people (like me) for whom being autistic is an integral part of their identity.

pohjie
pohjie

@DawneMorgan unless you have given them an MRI and testing... You simply can't say that. Period. We don't know enough yet to make a true determination.