Research suggests children can recover from autism

CHICAGO — Leo Lytel was diagnosed with autism as a toddler. But by age 9 he had overcome the disorder. His progress is part of a growing body of research that suggests at least 10 percent of children with autism can "recover" from it _ most of them after undergoing years of intensive behavioral therapy.

Skeptics question the phenomenon, but University of Connecticut psychology professor Deborah Fein is among those convinced it's real.

She presented research this week at an autism conference in Chicago that included 20 children who, according to rigorous analysis, got a correct diagnosis but years later were no longer considered autistic.

Among them was Leo, a boy in Washington, D.C., who once made no eye contact, who echoed words said to him and often spun around in circles _ all classic autism symptoms. Now he is an articulate, social third-grader. His mother, Jayne Lytel, says his teachers call Leo a leader.

The study, funded by the National Institute of Mental Health, involves children ages 9 to 18.

Autism researcher Geraldine Dawson, chief science officer of the advocacy group Autism Speaks, called Fein's research a breakthrough.

"Even though a number of us out in the clinical field have seen kids who appear to recover," it has never been documented as thoroughly as Fein's work, Dawson said.

"We're at a very early stage in terms of understanding" the phenomenon, Dawson said.

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Previous studies have suggested between 3 percent and 25 percent of autistic kids recover. Fein says her studies have shown the range is 10 percent to 20 percent.

But even after lots of therapy _ often carefully designed educational and social activities with rewards _ most autistic children remain autistic.

Recovery is "not a realistic expectation for the majority of kids," but parents should know it can happen, Fein said.

Doubters say "either they really weren't autistic to begin with ... or they're still socially odd and obsessive, but they don't exactly meet criteria" for autism, she said.

Fein said the children in her study "really were" autistic and now they're "really not."

University of Michigan autism expert Catherine Lord said she also has seen autistic patients who recover. Most had parents who spent long hours working with them on behavior improvement.

But, Lord added, "I don't think we can predict who this will happen for." And she does not think it's possible to make it happen.

The children in Fein's study, which is still ongoing, were diagnosed by an autism specialist before age 5 but no longer meet diagnostic criteria for autism. The initial diagnoses were verified through early medical records.

Because the phenomenon is so rare, Fein is still seeking children to help bolster evidence on what traits formerly autistic kids may have in common. Her team is also comparing these children with autistic and non-autistic kids.

So far, the "recovered" kids "are turning out very normal" on neuropsychological exams and verbal and nonverbal tests, she said.

The researchers are also doing imaging tests to see if the recovered kids' brains look more like those of autistic or nonautistic children. Autistic children's brains tend to be slightly larger than normal.

Imaging scans also are being done to examine brain function in formerly autistic kids. Researchers want to know if their "normal" behavior is a result of "normal" brain activity, or if their brains process information in a non-typical way to compensate for any deficits.

Results from those tests are still being analyzed.

Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.

Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil.

Significant improvement suggesting recovery was evident by around age 7 in most cases, Fein said.

None of the children has shown any sign of relapse. But nearly three-fourths of the formerly autistic kids have had other disorders, including attention-deficit problems, tics and phobias; eight still are affected.

Jayne Lytel says Leo sometimes still gets upset easily but is much more flexible than before.

___

On the Net

National Institute of Mental Health: http://www.nimh.nih.gov

Autism Speaks: http://www.autismspeaks.org

Comments

[calamityjohn]

"Research suggests Children Can Recover from Autism" .. really when the
title should read "80-90% of Children With Autism Will Not Recover"

The headline reflects our strong societal desire for a silver lining to this cloud .. a ending full of rainbows and butterflies ..

I am afraid that one of the real effects of this headline (and many similar stories over time) can be to add more guilt, blame, and false dreams to the lives of the other 90% of the families and caregivers of those already facing the challenges of dealing with autism.

[maggiemom]

No because the change is in the 10% being recoverable. the other 90% status hasn't changed. I am sorry if it causes guilt in some- I wanthope and that is what I take fromit! I want more of these stories. I was as high as a kite last night after reading it!

[MNmommy]

"Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.

Many also have above-average IQs and had been diagnosed with relatively mild cases of autism. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil."

Is it just me, or do the above statements point to the possibility that the "formerly autistic kids" were possibly misdiagnosed with Autism instead of Asperger Syndrome?

I'm not thrilled with words *cure* or *recover* either, improved doesn't quite get it either.

Thing to always remember with Spectrum disorders are that they represent developmental delay not death to development.

[maggiemom]

the kids were screened carefully- it was exactly that idea they were testing out. My nephew was 2ish when diagnosed- he was an extreme case at that time- now at 6 he wouldn't be picked out as different except by a professional or another parent who has a child on the spectrum too! His parents were not told he was delayed - they were told he would never do ......well I am sure you jknow the nevers.

[maggiemom]

oh- just for full disclosure(because I know I am openly bio med) My nephew used none of it-just standard OT,Speech and school programs- nothing off standard and nothing expensive to them!

[MNmommy]

At two, whilst my daughter was incredibly verbal, she would run across a room at her father or I and bite us HARD in the legs, she toe-walked, failed to make eye contact, had two hour long temper tantrums, was destructive with toys, she stimmed...

She's never been labeled on the Spectrum - so is she recovered as well?

[autismnostrum]

Also worthy of mention - the kids who "recovered" didn't have a lower rate of vaccination or higher rate of chelation, nor did they generally receive any biomedical intervention.

http://leftbrainrightbrain.co.uk/?p=2332

[maggiemom]

Your link says that biomed was not found in the optimall outcome group- that isn't what the researcher said- She said it was no more present on the optimal outcome group- therefore it is not hindering or helping- the link ends with the conclusion biomed would hinder-which the researcher did not say.
second was diet included in the biomed coversation-it isn't in the abstract- neither is any of the chelation conversation- Have you found any better links with more specific info?

[lz1982]

I think the kids were likely diagnosed HFA or Asperger. The article says that the boy profiled, Leo, still gets upset too easily but is more flexible. That often happens with HFA kids as they get older---not because they're "cured," but because they've learned to adapt better. So the news here is that some mildly autistic kids show fewer symptoms as they age. Why should that be surprising?

[dugmaze]

Our son is responding amazingly well to dieting (gf/cf and no carb). When he went off of it, all his symptoms came back plus some.
We have never done any other treatments but plan on trying ABA and speech. I have a feeling he will be one of the recovered ones.

[SusanStoHelit]

Autism is so broad right now - I don't think we understand it at all - I think it's a name for at least 10 or more different disorders. Probably that's the thing here - one of them is curable. Others, no matter how much intervention, therapy, etc. is done, are not at all curable.

[maggiemom]

Very true- it is not all the same thing at all.

[whitiwhiti]

Seems like 'recovery' is the wrong word. That word connotates getting rid of some disease or growth or getting better , back to normal, after an accident. It's not like that. It's not about recovering, it's all about developing the skills you need to get on in this world. It's all about learning and having the opportunity to learn. A child won't learn how to read and write do math, play basketball unless someone takes the time to teach them. Someone on the autistic spectrum won't learn how to regulate their emotions, organise themselves, socialise appropriately etc. unless someone teaches them. And just like everyone else some will catch on more that others. I'm not sure this 'discovery' is such a 'discovery' at all. Anybody that has seen a child on the spectrum develop and learn new skills and ways of relating know things can get better. I don't believe there has to be intensive expensive therapy. Good teachers with a bit of public money and a few supports along the way can work miracles.

[kwombles]

I agree with you completely that treatment doesn't have to be expensive; it does have to be consistent and time-intensive, but dedicated parents can make a huge difference in the functional levels of their children with autism. I have three on the spectrum and have spent the bulk of their lives providing them with the stimulation and repetition they needed to learn how to make and sustain eye contact, to comply with requests, to engage in social communication to get their needs met and to converse with others politely. Social skills training is extremely important. While my three children (even my oldest for short periods, especially if you asked about Yugioh) can all appear relatively normal in situations for which they have been amply prepped, I would not call them recovered. Their brains work differently and they see the world differently. They may comply with social norms with appropriate inducement, but it is because of the inducement, not because it makes any intrinsic sense to them.

[dugmaze]

kwombles ,
Have you ever tried dieting or any other food type treatments? And if you did was it helpful?
What is Yugioh? I don't know that one.
"stimulation and repetition they needed to learn how to make and sustain eye contact, to comply with requests, to engage in social communication to get their needs met and to converse with others politely"
Did you follow some type of planned therapy or did you invent your own based on your kids?
Any info would be greatly appreciated.

[calamityjohn]

the danger of statements like this is that can be easily taken to imply that the blame for a child that doesn't "recover" rests at the feet of the child's parents and teachers.

[kwombles]

John,
You have every right to be concerned that the sweeping generalization that children with autism can get better to the point of "cure" might lead people to look back to the teachers and parents and blame them for the lack of improvement. Media rarely deals with nuances or the tremendous differences between an individual on the most severe end of the autism spectrum and one on the high end of the spectrum. They are vastly different disorders with incredibly different outcomes. Children who are on the mild end of the spectrum, without co-morbid disorders, may make seemingly amazing progress while children on the more severe end struggle for improvement. The article and research it is based on should have been more precise.


Parents with children on the milder side (as I am with my daughters) must remember as we find hope that parents with children on the severe side (as I am with my son) do not have that same hope. Instead, they are faced with the daily difficulties in rendering care to children who are now bigger than them, who may have significant impulse control issues, and who must be watched at all times. These parents' work will never end; even if they opt for group homes for their grown child, the weight will not be lifted from their shoulders. Their hope resides in their child being safe and well-cared for after they are gone.

[maggiemom]

Autism nostrum has a link with a link in it to the abstract- the abstract is very interesting and does show that tthe study found factors that would lead to more hope or less hope of recovery. For example the pressence of seizures or separate syndrome would indicate less of a chance where as good recceptive language would lead to more of one.

At any extent- all parents fight the best possible fight for their children- and know their children better than anyone else-It is never a parents or teachers or even the child's fault that htis developes in the first place or doesn't rescind. It is a lot "luck" and I just want every child to get an equal chance just in case they are amongst the lucky!

I could see people ignorant of this issue saying, "cant that be cured?"
And I guess we have to eduacte those people the best we can.

[AmericanFool]

Agreed, was thinking much the same thing. My oldest was diagnosed at 18 months in a pilot diagnostic program. He had years of therapy, but not 30 or 40 hours per week! Over the years we've probably paid $30,000 in individualized therapy, and he's also been in some state-related programs. Thank god we had the resources, and I know we got off light compared to the needs of some children on the spectrum. He's 9 now, and most people would not recognize his odd behaviors. He has improved at light speed, but the signs are still there, if muted. Clearly his thought process is different, his emotional reactions are different, his interests are different, even if in many ways he appears to be normally developing. I wonder if we had had the resources to put him in this kind of intensive therapy whether he might have progressed more. I should add he's high-functioning and very intelligent, very high IQ, so I suppose he was a 'prime candidate' to show this kind of improvement. As it is, I think we got a lot of bang for our buck, so to speak, and I imagine there is a point of diminishing returns, but how are you to know where that point is? Then once you know it, how do you pay for it all? Clearly there are real needs that are not being met, but also real questions about what is needed.

[Alice R]

i'd love to know the incomes of the families with "recovered" children. most parents can't afford "years of intensive behavioral therapy" for their children, and their insurance (if they are lucky enough to have any) most likely doesn't cover it. your average year of intensive behavioral therapy runs from $35,000 up (in utah, it comes in around $52,000). autism may affect children across the spectrum of wage classes, but care and educational options don't follow suit. there's a disgusting and tragic disparity there.

[maggiemom]

Check out Amanda Copelands excellent piece about this problem right here on the post. It is so true that it is out of reach for lower (heck even middle income) income families living in underfunded districts without ins (or with bad ins!)

[autismnostrum]

No doubt. We tried to push through legislation to mandate insurance coverage, but the insurance lobby is just too strong around here. And then the state cut their medicaid budget, too.

I'd love, love, love to be able to even afford 20 hours a week of intensive therapy. The most we can get is 12 hours a week of preschool. It's a good preschool, but it's 12 hours a week. We do what we can with what we have and just work with our kids ourselves. It's what we have to do.

[maggiemom]

Insurance companies have to be forced to cover this! I am beyand blessed because illinois mandates coverage up too 36,000 dollars a year (which will cover most if not all of a year's treatment) But my question is if a child has a comorbid conditionn-like seizers will that be included in "autism" moneys? I guess step one is mandated ins. coverage in all states- then we can wrangle out the details. This is something you and I can agree on!