About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Saturday, May 9, 2009

Recovery redux.

Recovery junkies know about the three studies from 2006 through 2007, and the 2008 study, each of which demonstrates that children who meet the diagnostic criteria for an autistic spectrum disorder can later "lose the diagnosis." Now comes yet another study (which is still ongoing) evidencing the recovery phenomenon (hat tip to Goodfountain). (If you get deja vu when you read the blurb, it's because the lead author, Deborah Fein, and the results were previewed in this clip.)

At issue are three critical questions:
  • Can a child who meets the diagnostic criteria for ASD at a young age cease to meet the diagnostic criteria at an older age? (The "If".)
  • What are the traits of the children who have the potential for "recovery"? (The "Who.")
  • To what is recovery attributable? (The "How.")

Let's see what us amateurs can glean from the published extracts.

If - Given that there are five studies validating the phenomenom, I believe the If question is answered in the affirmative. This blogger doesn't doubt that the phenomenom is real.

Who - As for the Who, this study concludes:
Children who failed to meet diagnostic criteria for ASD at follow-up were more likely to: 1) be 30 months or younger at initial evaluation; 2) have milder symptoms of autism, particularly in the social domain; and 3) have higher cognitive scores at age 2.
In other words, these children were on the mild to moderate end of the spectrum to begin with.

How - Now onto the loaded question - the "How." The How is why the MSNBC clip sent me into a tizzy. The How can likely be attributed to either services or maturation. As I have blogged, I think it's maturation, and this study validates my belief:
No differences between children with stable and unstable diagnoses were found for amount of intervention services received.
I'm not asserting that services don't help. On the contrary, I believe that services are essential for certain children. Rather, I'm suggesting that full blown "recovery" is a biological destiny that cannot be induced with services, a conclusion supported by the above excerpt.

Now let's loop back to the 2008 study and the most recent study (which is ongoing). Note that Deborah Fein, featured in the MSNBC clip, is involved in both studies. Since the most recent study is ongoing and not yet published, I will attempt to deconstruct the 2008 study, which appears to be substantially similar.

In this blogger's opinion and based only on the abstract, the 2008 study is a bit obtuse and has an editorial bias. The abstract states:
Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity.
Let's focus verbal or motor imitation, commonly referred to as "mirroring." The absence of mirroring is said to be one of the hallmarks of autism. The 2008 study shows that the presence of mirroring in a child is a predictor of losing the diagnosis. But then it goes on to say that "overall symptom severity" is not a predictor of losing the diagnosis. Really? By implication, the study is asserting that a child can have mirroring skills yet still be "severe" from a symptom severity perspective. I'm not an expert, but that doesn't make sense to me. If a child has mirroring skills, relatively high intelligence and receptive language, then that child is at most moderately impaired, relatively speaking, and to suggest otherwise seems obtuse to me.

Next the study goes on to state:
Controlled studies that report the most recovery came about after the use of behavioral techniques....Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal.
The clear implication: ABA ("applied behavior analysis") brings about recovery. I feel a tizzy coming on again. Blood pressure rising. Here is the big flaw: the study doesn't compare the ABA group to a group that didn't receive ABA. Now, you might say, well you are just reading the abstract, which is true. However, Kev from Left Brain/Right Brain reports that he reviewed the entire 28 page study, made the same observation and went so far as to email the study's authors. The authors replied to Kev on an unrelated point but did not address the issue of controlling for services. (See second to last comment from Kev.)

The new, ongoing study reports:
Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.
What we don't know is whether they are following children who were not receiving ABA.

With respect to the 2008 study and the ongoing study, I suspect an editorial bias in favor of services. Which I understand because I'm sure ABA does a lot of good for a lot of children. But editorial bias is not science. Unless they're comparing the beneficial effects of the ABA to a controlled sample (like the Lovaas study did), then it's all smoke and mirrors.


Patience said...

Well we didn't do ABA (couldn't have afforded it even if we'd wanted to) and my dd is doing fine now.
I didn't get the impression that anyone cared whether she'd improved and was just told that we were "lucky" and that she was "high functioning" (which sounds so mechanical)
Plus I always felt that if we talked to anyone about it; they'd pick dd apart and find ONE symptom/behaviour that was a tad off and point to it and say "see that's still autistic behaviour"
It was like she had to be perfect or nothing.
Our services included floortime at home, one session of OT to learn about SID and do a bit of that, some speech therapy blocks over the years (not regular weekly sessions), tutoring and Fast Forword for auditory processing and pushing the schools and camps to include her in normal classrooms (not trivial)

Brenda said...

Happy Mother's Day to you! Thanks for the report on the research! Hope your child is doing better every day!

Anonymous said...

Hi, Laura.

Re. your comment: "Rather, I'm suggesting that full blown 'recovery' is a biological destiny that cannot be induced with services, a conclusion supported by the above excerpt." If this is true, then it seems to indicate that any outcome ("recovery" or no) is biological destiny.

Brief history: at about 22 months, our son was said to have global developmental delays -- not enough on the spectrum to call it autism. About two years later, we got the diagnosis from a neurologist. By that time our son was much more obviously autistic -- hand-flapping, toe-walking, still largely non-verbal (as he continues to be at age 6). Two years ago we started a VBA program, 40 hrs/wk during the summer, 25-30 during the school year, plus special ed preschool then kindergarten, speech and OT. Some of his social skills have improved -- the language skills not so much. He was become more "stimmy" though he has had some gains in attention span. He read at age two, but seems to have lost that skill (or is now so disinterested that he seems to have lost it).

All this is to say that those hundreds of hours MAY have helped him, but I've been gradually coming to the conclusion that any progress in development will happen when (if) it happens. I remember the neurologist who gave us the dx saying that he sees kids who get tons of hours, and kids who get the standard help through public school -- and he didn't see any difference in outcome, no matter the type of therapy. I resisted that idea mightily at the time...now I'm not so sure.

Are the kids who are "higher functioning" at age two (as in this study) just that much closer to whatever sweet spot there is in the brain -- that might propel them forward? Is there any difference between high and low functioning except for where they fall on a time continuum? (Maybe the spectrum IS a time continuum!)

I've read that most autistic children "get better" over time -- and that this has always been true. Not that they become un-autistic, however.

In any case, I feel like being an "autism mom" is like traveling in the dark on a very faint path, with other paths constantly appearing at either side, no map, no markers, and no way of knowing whether I'm moving forward, backward, or to the side.

Thanks for your thought-provoking posts. I've been reading your blog since you first learned of your son's delays. It's quite the journey, isn't it?

Laura said...

Patience, I know, and you're not alone, and in truth it's stories like yours that have influenced my beliefs. That's part of the reason I blog about moderate services.

Brenda, thank you, and belated happies to you too.

Beccatown, thank you for your thoughtful comment. I don't mean to discourage or cast doubt on services. I do believe that ABA and all of the services that exist today that didn't exist in a different day and age (including early screening) can be instrumental in bringing about a positive outcome. And by "positive outcome", I mean, for example, words where there would otherwise be none. And that counts. A lot. My main issue is cloaking the ABA-recovery connection in science when it remains speculative.

Queenbuv3 said...

My son was very severely Autistic at 18 months and although he has made amazing progress since then, he is still considered severely Autistic. He had Early Intervention and has had OT,PT,SP since his diagnosis and I think it has helped tremendously. But the fact remains that he is still on the severe end.

It sounds like the children in these studies that "recovered" were more likely Asperger's or very high functioning Autistics. We did ABA when my son was little and he made very little progress and actually was very violent. Once we used the floor time approach he responded better. We tried ABA again when he was older and again became very violent and didn't make much progress. Once we got him into a program with the TEACCH method he made tremendous progress and is a happy affectionate kid unless he is upset, hurt or something is bothering him that he can't communicate. I'm happy for any child that progresses to the point of "losing" the Autism diagnosis, however, I feel they probably weren't Autistic to begin with. I worry that so many parents are focusing so much time and energy on "curing" their children that they are missing out on getting to know their children and appreciate them as a unique person with interests, feelings and abilities God bless : )

Patience said...

I just want to comment that Aspergers and Autistic Spectrum Disorder are considered two different diagnosis.
One cannot be "upgraded" to Aspergers. From what I understand; one of the big differences between ASD and Aspergers is that children with Aspergers have no speech delay (but don't use language in a socially normal way)
I'm just commenting here because as my dd improved; I was told that maybe she was really Aspergers (by non professionals I might add) and yet she did have profound speech delay. There are other differences too but I won't go on.

Laura said...

Queenbuv3 - thanks for sharing your story. I'm not defeatist - I think all progress should be celebrated.

Saja said...

Speaking as a 42-year-old HFA, there is no "recovery." There's improvement based on careful observation and mimicking, to the point it becomes second nature. As an awkward, odd little girl (long before any chance of a diagnosis), I didn't have the skills to fit in, but I desperately wanted to. Over the years, I worked hard--and consciously--to master social behaviors, and I eventually did. For the past umpteen years I've been a perfectly "normal" social being (if still a little quirky :-) ), which is very rewarding, though it's still hard work for me.

One word of caution: all this improvement is very taxing to the autistic person. We have character traits, wiring, neurology, what have you that don't disappear as we get better at navigating in the world. We will always need "down time," time to be ourselves, to perseverate, to stim, to drop the social mask. Your HFA little person *wants* to understand the world he or she lives in, and will do his or her best to master the skills to live in it well. We *do* have empathy, we do identify with others, perhaps too much; we can't filter out all the input. So please remember that your little person is not a "robot" or unfeeling person, deficient in empathy. Nothing could be further from the truth.

~AspieMom~ said...

Thanks for posting these thoughts. I'm with Saja in that I believe many of the HFA and Asperger folks learn how to cope and therefore appear to be cured/recovered.

I really dislike the fact that the word cure is used at all. The last thing I want my son to think is that he needs to be fixed. I enjoy him the way he is.

Nyx said...

Thanks for another really thought-provoking article. I find it so very striking that these studies suggest that as many as ... is it 1/3? ... of these children "lose" the diagnosis for whatever reason, apparently most of them were diagnosed very early, and at the same time the percentage of children diagnosed with an autism disorder has risen? Surely this is not a coincidence. When you see numbers quoted about how the percentage of children diagnosed with an autism disorder has increased to 1 out of 150, does this include the children who "recovered"? I know there is no way in the world that 30 years ago anywhere near this many children got "screened" for autism before they were 30 months old. What exactly do these screeners use as a baseline, if you get my drift? My son never would have been diagnosed but for this giant machinery that led him to a county service that scared me into taking him to a developmental pediatrician, which otherwise I wouldn't even have done. I wasn't worried about him. No layperson who has ever met him has ever worried about him. But the dev. pede was "quite confident" he claimed. I'm not saying there's not SOMETHING there, just that, gosh, isn't it likely that some of these kids "back in the day" we would've called "a little off" or "quirky," they would've been eccentric, smart and today they're out there living their lives just fine, and nobody ever took them in to be diagnosed. But if they took them in today, how many of them would get a diagnosis of autism spectrum disorder as an adult? I really really wonder. In fact, the whole disconnect between this child intervention movement and adults living with autism spectrum disorders is really strange. How come these studies never involve adults? Why isn't somebody (or is somebody?) studying adults functioning well (and by that I mean happy, content, fulfilled and loving life) with an autism spectrum disorder and talking about what sort of childhoods they had? I read one place a HFA talked about how much love and support and acceptance she got from a large and loving family, and what a difference she believed that made. I have to believe that too. As for mirroring, I thought I read a reference to a study somewhere that suggested that austistic children do sometimes have firing of the mirror neurons, if weakly, when they are watching themselves on film ... or their mother. As another low-level-of-services mother, I had to cheer at that one.

Saja said...

Nyx - if Asperger's had been on the radar back in the early seventies, I'd have fit the criteria beautifully. (Which is a completely different question from whether my parents would have felt I needed to get a diagnosis of anything...I suspect they didn't.) Would I get a diagnosis today? Only from a therapist well-steeped in Asperger traits (especially as they present in females).

As you say, back then, I was just a geeky, dorky little girl trying not to get too bullied around on the playground for being "smart and shy." I got lots of adult attention for being a model student and very smart (skipped two grades), but was in misery over my social inadequacy. I worked so hard to fit in. It paid off (though it continues to cost me; there's only so much energy to go around).

We are wired differently, but we're not aliens. Autistic children develop and grow just like other children. I think it would be more abnormal for an autistic child NOT to gradually acquire more successful (and thus "less autistic") behaviors as he or she develops; development is natural.

Saja said...

One more thing - though many of us who didn't come to realize our autism until (late) adulthood are doing well, living normal lives, married, kids, functioning well, it does come at a cost. Eventually, I think each of us reaches a crisis point, when we've just GOT to make room for our different wiring. I've started blogging about how that plays out in my own life. I think there is real value, even a necessity, for ASD adults in realizing that's what they are, so they can honor their very real needs, which never disappear (sensory sensitivity, need for solitude, and so forth).

So while autistic children can grow into succesful, happy adults with fulfilling lives, they remain autistic; and it comes back to bite you in the behind if your life doesn't have the tools to support the way you're wired.