Thursday, February 16, 2012

Outgrowing Autism? Outgrowing the Symptoms, Outgrowing the Clunky Autistic Spectrum

Who could resist this beauty at only $112. 
Can kids "outgrow" autism?

A new study shows that almost one-third of children once diagnosed on the autism spectrum loose the diagnosis. 

The study published in February's journal of Pediatric also shows that "outgrowing" autism may be related to the number and severity of the child's other psychological and physical conditions present at the time of the original diagnosis.  Conditions from attention deficit hyperactivity disorder, learning disabilities, depression, anxiety to epilepsy, seizures, speech and hearing impairments.

Researchers from Johns Hopkins Bloomberg School of Public Health looked at data from almost 1,400 children aged 3 to 17 with either a past or current autism diagnosis.  Parents were called and asked  whether their kids had an autism diagnosis.  Yeah, I know, imagine getting that call about 5:30 pm between homework, piano and baking the allergy-free brownies for the birthday snack at school. For one, whose kid doesn't have some attention deficits by that hour?  I start exhibiting a little borderline personality.

Anyhow it's a wonder anyone answered but many reported that indeed their child no longer had an autism diagnosis:

25% of parents with 3 to 5 year olds
33% of parents with 6 to 11 year olds
35% of parents with 12 to 17 year olds 

Interesting data in and of itself, no? Remember all the kids at one point were put on the spectrum. Note the older children seem to loose the diagnosis.  It's unclear why.  In fact this study didn't address the why but there are some clues about which children tend to shed the autism. 

Kids with two or more "co-occurring" conditions (in addition to autism) were 5 times more likely to still have the diagnosis:
Among preschoolers, kids who were diagnosed with a current diagnosis of autism were almost five times more likely to have two or more other conditions than those kids who had a previous diagnosis of autism. Learning disabilities and developmental delays were the most significant predictors of having a current autism diagnosis in 3- to 5-year-olds. Why Some Children May "Outgrow" Autism, WebMD, January 23
This is probably not much of a surprise to parents with children on the spectrum or who are familiar with the compilation of disorders and symptoms aka the Diagnostic and Stastical Manual of Mental Disorders (DSM).  Symptoms tend to overlap across disorders.  Inattention, for instance, pops up in ADHD and autism check-lists as does many other symptoms.  Also, the younger the child, the trickier to suss out the primary disorder so to speak. Some kids get slapped with a label or two that doesn't quite fit. Over time one diagnosis becomes a better fit.  Consider hearing impairments that in preschoolers can look very much like autism (i.e. a child with social/communication impairments).  So some "outgrow" autism simply by being misidentified early on. 

No doubt some "outgrow" it by showing improvements (i.e. reduction of symptoms).  The link between co-occurring disorders and autism, thus, probably has something to do with treatment too.  Children improve in many realms thanks to treatment - targeting not just the other conditions but autism too. The more treatment, the fewer symptoms.  

In any event, this study shows the type and number of co-occurring conditions predict whether children will retain an autism diagnosis or "outgrow" it.  But not why kids seemingly "outgrow" it according to study author Li-Ching Lee, PH.D., ScM, associate scientist at the Johns Hopkins Bloomberg  School of Public Health:    
"We don't know what changed the diagnosis. However, we want to deliver the message that it's important to look at the other coexisting conditions, evaluate them before you make a diagnosis, and also recognize these conditions vary by development age." Medline Plus, NIH
In other words, clinicians out there, try to be more accurate in doling out the diagnoses. 

As if psychologists and psychiatrists aren't going to be confused enough with the new autism definitions featured in the imminent DSM-V. Seems we as a society have outgrown the expanded Autistic Spectrum, especially Aspergers and Pervasive Developmental Disorder. 

By the way, can you imagine the work researchers will have in future decades trying to do this kind of study after the new DSM comes out with a narrower definition of autism?  Comparisons across time are going to present a real head ache.  It's already confusing - for a little sample read this recent piece in the New York Times.  Asperger's History of Overdiagnosis, January 31.

For those of you in need of comic relief, check out this graphic ode to pseudo-science featuring autism quack and de-licensed doc Andrew Wakefield.  The Red Flags of Quackeryv2.0.  Brought to my attention by autism guru Liz Ditz

Heather A. Close, Li-Ching Lee, Christopher N. Kaufmann, and Andrew W. Zimmerman. Co-occurring Conditions and Change in Diagnosis in Autism Spectrum Disorders. Pediatrics Vol. 129 No. 2 February 1, 2012 pp. e305-316. doi: 10.1542/peds.2011-1717

9 comments:

JuliesMum said...

What an interesting report. I have wondered for a while about this. My son had a diagnosis of Aspergers around about 7 years old, after a couple of years of very disrupted schooling. We endured several more years of quite extreme behaviour, but by the time he reached secondary school it was clear he was coping much better. One of the psychiatrists actually told me when I asked about this that they did find some children just outgrew the symptoms. Now aged 13 he is a typical adolescent boy - and intensely social. It is clear that he is still slightly odd in certain ways - special interests and certain mannerisms of speech - but also clear that they are not significant to him at the moment. I suspect he is not quite normal but a combination of learning coping strategies and the fact that most adolescent boys (and many men) show the same sort of traits, means that he now fits in fine. In fact since his special interests are fairly academic he may do quite well because he is so obsessively focussed on them.

Polly Palumbo, Ph.D. said...

What an interesting real-life example. In fact your story (your son's story!) reminds of a few friends and family members of my own - many successful and productive and often quirky individuals that lend a unique and sometimes expert perspective. I wanted to include a bit in the post about a young man in his own words who was "briefly" autistic. It's a recent op-ed in the New York Times - you might have seen it? Basically he emerged the other side of adolescence a social, thoughtful young adult.

http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html

I Had Asperger Syndrome. Briefly., New York Times, January 31, 2012

For every story like his I seem to hear or read about an adult wishing they'd known they had Asperger's at a younger age. I heard a woman on NPR saying a recent Asperger's diagnosis for her hubby saved their marriage.

Polly Palumbo, Ph.D. said...

Sorry about typos, re-injured wrist I broke. Hello, arthritis. Hello, Advil.

JuliesMum said...

No, I hadn't seen that article in the NYT. It certainly makes you wonder how easy it is to diagnose Aspergers, especially during the turmoil of adolescence. But I'm also aware of the adults who are 'a bit different' and who find themselves wondering whether they should have the diagnosis. It seems possible to me that there really is a whole group of people in our society who are actually different but who function pretty well most of the time. We might be picking some of these up as kids now, but for most of their lives they might function pretty well - perhaps better than average - and just have what look like harmless eccentricities. (I'm not sure if Americans have the trainspotting phenomenon!) I'm also saying this partly based on my experience as a programmer - a profession which is definitely well-suited to people who might struggle with a role that required more conventional social interactions.

Polly Palumbo, Ph.D. said...

Trainspotting? Saw the movie years ago but have no idea how it relates to autism. Do tell.

Ah, programmers - and academics!

JuliesMum said...

No, not the film! People (mostly -perhaps always - men) who stand around on station platforms noting down the numbers of the trains that go through. I think they collect them like stamps (not actually sure). They sometimes travel and congregate around particular junctions if they know something a bit rare is coming through. It's a bit like birdspotting but less meaningful. There are planespotters too! Some were arrested a few years ago in Greece over a misunderstanding that they were spying. It was hard to explain so I gather they don't exist in Greece.

Yes, programmers and academics - any profession where the wearing of socks is optional.

Polly Palumbo, Ph.D. said...

Okay so trainspotters are like the amateur baseball statiticians! Good to know.

Yes, good heuristic. Professionals not wearing socks. Like that.

Liz Ditz said...

Tried to leave a comment earlier but something went awry

On adult autistics without a diagnosis, Temple Grandin famously said that "NASA is the largest sheltered workshop in the world".

For first-person accounts of being diagnosed with autism in adulthood, you could start with Rachel Cohen-Rottenber's Journeys with Autism

Polly Palumbo, Ph.D. said...

Maybe Blogger having issues again? Thanks for trying again, Liz. Love the NASA quote!

Just starting reading Temple Grandin's book, Thinking in Pictures. Fascination. Her explanations of how she perceives and also "translates" the world have really made me stop and think.