Thursday, January 24, 2013

"Outgrowing" Autism: What the Media Missed

Is it possible for children to outgrow autism?  Good question.

By now many of you know about the new study suggesting kids diagnosed early in life might be able to "outgrow" it.  Maia Szalavitz covered the study at Time Healthland:

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. New Study Suggests Autism Can be ‘Outgrown’, Time Healthland

Good article.  Important topic.  Pretty good study:
Children were diagnosed by age 5.
Children had mild social interaction deficits and rather severe communication and behavioral repetition. So in some way did have "milder" symptoms.

Researchers pulled diagnoses from medical records (not just parent's say so).

Current autism symptoms assessed by interviewing and observing children/young adults.
Those who outgrew autism had higher than average IQs.

A few things the media might have missed:

Very small number of kids.  Only 34 children who "outgrew" it here. This is a pilot study, part of a much more ambitious project. I do wonder why more kids weren't included. Is this because outgrowing it was so rare they couldn't find any more suitable participants? The authors don't clarify this in the paper.  Basically the purpose of this small study was to verify there are kids out there who exhibited autism early on that currently don't fit the diagnosis.

Retrospective study.  Researchers gathered up kids who appeared to display autistic behavior and compared their current status to other kids who still had symptoms.  It would have been a much stronger study if researchers gathered kids early in life and watched them until age 18 to see who showed changes (.e. a prospective study).  

It's a subtle point but imagine why it might be a concern.  You're a researcher. You want to know whether reports about outgrowing autism are valid.  You have to find kids who once had it but are now over it so to speak. The quickest way to study it? Troll through your database to find kids who were once diagnosed but now do not have a diagnosis.  You check them against a group that still has symptoms. Check out all the kids for current symptoms. Boom. One group appears to have "outgrown" it.  

In a way the researchers cherry-picked their own evidence (i.e..kids who outgrew it) because otherwise they'd have to wait another 10 years to check out kids just diagnosed.  They basically said let's see who no longer has autism (no longer qualified under the diagnosis AND showed normal scores on a range of social and communication skills). How? Find kids who no longer have autism! The authors acknowlegde this approach has some limitations:
A general point that should be noted is that by defining the OO (outgrew autism) group as having scores within the normal range on specific cognitive and adaptive measures, we reduced the likelihood of finding OOTD differences (difference between the kids who still had autism and those who "outgrew" it.
Did kids really have autism? The study speaks to the question of whether kids were initially misdiagnosed.  Here's some good evidence kids who appeared to outgrew it were not misdiagnosed.  I'm not sure many media articles stressed this point. It's not fool-proof evidence. Again if researchers rounded up 3, 4 or 5-year olds and double and triple-checked their diagnoses then it would be even better.

Limited evidence from other studies suggest this phenomenon (outgrowing autism) is very rare.

Did kids naturally outgrow autism? The term "outgrowing" suggests kids naturally developed better communication and behavioral skills when in fact anecdotal evidence and again some evidence from this study shows kids who "outgrow" it participate in many interventions. 

Personally I don't really like the term but somehow "cure" sounds even worse.  Do you have a better term or phrase? Overcome? Developed more people skills?


Read it for free:
Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry. 2013 Feb;54(2):195-205. Fein D, Barton M, Eigsti IM, Kelley E, Naigles L, Schultz RT, Stevens M, Helt M, Orinstein A, Rosenthal M, Troyb E, Tyson K.

doi: 10.1111/jcpp.12037






 

12 comments:

Deb R. said...

Thank you for writing about this work. I have a son with autism and look forward to more research.

Polly Palumbo, Ph.D. said...

Hey Deb, let me know if there's another study out there worth reading (or not!).

Barbara TherExtras said...

Well done, Polly. IMO the most salient point made by this study: "some evidence from this study shows kids who "outgrow" it participate in many interventions."

IMO autism is badly diagnosed. At this point in the short medical/social history of the diagnosis, I am at a loss for turning around the process currently in place, quickly.

But, using a neurological (physiological/genetic) perspective is a means for parsing what we know. Children who are eventually determined to have above average intelligence likely do not have basic brain/neurological diagnoses (genetically disordered neural development). Their neurophysiology can be influenced, early, to grow in a more communicative and social direction despite not having the typical structural brain mass.

(1/2)

Barbara TherExtras said...

(2/2)
Long before the current (most recent decade) attention to the 'diagnosis' of autism, huge numbers of children with intellectual disability expressed "mild social interaction deficits and rather severe communication and behavioral repetition" early.

The 'spectrum' model has served this population poorly, blurring the causes and allowing the less informed to believe in unsubstantiated treatment.

"outgrew" might be the best term. For professional expression, I would say the children matured out of behaviors (that are normal for a short period in infancy) with the help of intensive intervention - without which, they would have matured more slowly, possibly resulting in diagnosis as one of the 2 euphamistic terms: Aspberger's Sydrome or high functioning autism.

Anonymous said...

How about calling it "maturing at a different pace." This is the same team that studied 2 year olds?

Polly Palumbo, Ph.D. said...

Barbara, good points. As a therapist I knew you'd have some ideas! Yes the spectrum seems to have blurred the differences (and "distance") between those with profound intellectual defecits/disabilities and those without not to mention those with higher intellectual functioning (and social, beh, etc).

It is a mess and might get even messier. It will be interesting to see what happens when PDD and Asperger's are taken off the table.

That's why this larger project is so important. Don't know if you looked at it but yes the researchers are doing all sorts of assessments, including brain imaging to tease apart the possible pathways to and "from" autism.

I can't even imagine how messy it will become dealing with changes in the DSM and how professionals are applying the new diagnoses.

Anony - Yes, this is the same project that published a study a few years ago. Studied then 4 year olds, I think, who'd been diagnosed at 2 but who longer had an autism diagnosis. Your point about maturing at a differnt pace, as Barbara touched on too, is valid too. Though I think most professionals suggest "optimal outcomes" appear only in the face of intervention.

Liz said...

Here's scientist and autism parent Emily Willingham's comments on the study,

http://www.thinkingautismguide.com/2013/01/can-people-really-grow-out-of-autism.html

It’s not a huge surprise that autistic people with average or above-average cognitive abilities might be able to intellectualize social rules and algorithms and put them convincingly into practice. Does that ability mean that they aren’t really autistic? The real crux to answering that is this: Do we view autism only as a clinical diagnosis based solely on behavior and outward function, or do we talk about it as a neurobiological construct and identification, with an understanding of the context of the hidden disability and the hard work that those outward behaviors require?

Liz said...

"Orac" at Respectful Insolence

http://scienceblogs.com/insolence/2013/01/23/does-anyone-recover-from-autism/

"Whatever the case, if anything, Fein et al should provide hope to parents of autistic children by emphasizing that autism is not static and that it should be possible, depending upon the mechanism at work in these children who “grew out of” their autism, to identify science-based personalized strategies to maximize the potential of each autistic children, not to mention the chances that they can eventually function as fully independent members of society living productive lives."

There is, as usual, excellent discussion in the comments.

Liz said...

What to me is the meat of the Autistic Self-Advocacy statement on the Fein study

"This study stems from an ongoing line of research on “recovery” from autism[vi]. This has shown, however, that the vast majority of those who “lose” an ASD diagnosis retain or replace it with ADHD, anxiety, and/or depression[vii]. The latest article’s editor claims that it begins a “science of hope” for “recovery” from ASD[viii]. Yet the study requires friendships with typically developing peers and normal social communication behaviors to remove ASD, but does not, e.g., exclude suicidal hopelessness, an “outcome” ASAN views as extremely less “optimal” than a happy Autistic person with a full life.

Autistic people do not “recover” and the idea of “recovery” has been profoundly damaging to the Autistic community, encouraging service providers to emphasize normalcy above other more meaningful goals. Furthermore, by teaching Autistic children and adults that “recovery” – pretending to be something we are not – is the “optimal outcome” they can achieve, we send a profoundly damaging message to Autistic people, our families, and the public at large. Autism is a natural part of the human condition and not something to recover from or eliminate. The goal of autism research and service provision should be to create happy Autistic people, not to encourage ‘passing for non-Autistic’ without regard to the impact on our quality of life."

http://autisticadvocacy.org/2013/01/asan-statement-on-fein-study-on-autism-and-recovery/

Polly Palumbo, Ph.D. said...

Thanks, Liz, you've done my work for me. Was going to include some more links. Do you know why they only included 34 kids?

Barbara TherExtras said...

My compliments & thanks to Liz, too, for her comments.

In particular..."teaching Autistic children and adults that “recovery” – pretending to be something we are not – is the “optimal outcome”

What comes to my mind with that phrase is the question of whether the behaviors are really "taught" - on the belief that learning is defined by organic neural changes, not "pretending" - ?

Polly Palumbo, Ph.D. said...

Good point but who doesn't pretend from time to time...like the introverts at the podium or the crowded party?