Mythbusters, Part I: The Infallible Gut

No, not the leaky gut, the infallible gut.

"If their child was PDD, they know it in their gut..."

So writes a parent of a so-called "late talking" child. I'm here to dispel that myth. While many parents recognize their child's PDD before diagnosis, in my experience, it's quite the opposite for a majority of parents. In fact, most parents haven't even heard of PDD. Of all the barometers for autism, a parent's gut is perhaps the least reliable. And if your child receives the diagnosis and you cling to your gut, the lightbulb won't go on.

Now I'm not arguing against skepticism, nor am I suggesting that there's no value to a mother's intuition. However, acceptance laced with skepticism is quite different from denial.

But reading the sentence excerpted above was a revelation for me. I had always been puzzled by the late talker yahoo group's mission statement:

This list does not serve those discussing vaccinations, special diets, sensory therapies or knowingly accepted false diagnosis.

How do you knowingly accept a false diagnosis? Does this idea presuppose that the doctor tells you it's a false diagnosis or a diagnosis for services? Does that even happen?

But now I get it. You know it's a false diagnosis, because: you know. In your gut. Your infallible gut, which isn't really infallible.

Update: Note - the late talker group changed its mission statement. The excerpt above was accurate as of the date the post was published.

Stability of PDD-NOS, Part II: Analysis

Peer-reviewed, published research indicates that children diagnosed with autism spectrum disorder at an early age can later go on to lose the diagnosis. For example, this study reported that 19% moved off the spectrum. The abstract lists three possible reasons for such movement:

1) True improvement based on maturation,
2) Intervention, or
3) Over-diagnosis at age 2.

The merits of these reasons is the source of much debate. In this regard, let's examine the public remarks of Professor Camarata, the controversial doctor whose research provides support to Einstein Syndrome author Thomas Sowell and shock jock Michael Savage. In a published article, he states:

The broader question is how one can tell if a child has mental retardation, autism or other pervasive developmental disorder, or language disorder-or will simply "grow out" of the problem. [Emphasis mine.]

Camarata doesn't appear to allow for the possibility that an individual can have a pervasive developmental disorder and grow out of the diagnosis. He phrases it as an either/or proposition.

But when we consider these studies in the aggregate, is it even plausible to source all of this movement off the spectrum to "over-diagnosis at age 2" or misdiagnosis. After all, each of these children were formally diagnosed (probably videotaped), and the results of the research were peer-reviewed. Is it even plausible that the researchers conducting the studies were guilty of sloppy diagnostics?

This blogger believes that the first reason - true improvement based on maturation - is the likely source of movement off the spectrum. I believe that the subjects legitimately met the DSM-IV criteria for PDD-NOS at age 2, and later grew out of the diagnosis. This belief is corroberated by the research, as well as my anecdotal experience.

Edited 09/24/2009

Thinking in pictures, thinking in words and...?

As I blogged, Professor Temple Grandin describes her thought process as thinking in pictures. Speaking for myself as a neurotypical thinker, I think in words. Grandin explores the possibility of yet another way of thinking in her essay "Genius May Be An Abnormality." She writes:

There appear to be two basic types of thinking in intellectually gifted people who have Asperger's or high functioning autism...The two types are totally visual thinkers like me; and the music, math and memory thinkers which are described in Thomas Sowell's book, Late Talking Children. I have interviewed several of these people, and their thoughts work in patterns in which there are no pictures. Sowell reports that in the family histories of late talking, music math and memory children, 74 percent of the families will have an engineer or a relative in a highly technical field such as physics, accounting, or mathematics. Most of these children also had a relative that played a musical instrument.

As I've blogged about here, Sowell asserts that the subjects of his book, including Albert Einstein, are not autistic. While Grandin disagrees with this point, she appears to acknowledge that there is a fundamental difference in the way a Sowell late talker thinks versus the way she thinks. Which begs the question: is "music, math and memory" thinking a third category of thought process, or is it really just neurotypical thought? Or maybe late talkers are just A Little Bit Autistic, thus the distinction in thinking process?

This thing is like that thing.

In comparing late talker and PDD-NOS, I've focused on the negatives - primarily language and social impairment. The flip side of the coin is also compelling. That is, research is showing that autisitics and "late talkers" are intellectually advantaged in a similar way.

Specifically, in an article entitled "The Truth About Autism: Scientists Reconsider What They Think They Know," Wired reports:

"One of the leading researchers...is Laurent Mottron, 55, a psychiatrist specializing in autism...By the mid-1990s, Mottron was a faculty member at the University of Montreal, where he began publishing papers on "atypicalities of perception" in autistic subjects. When performing certain mental tasks — especially when tapping visual, spatial, and auditory functions — autistics have shown superior performance compared with neurotypicals. Call it the upside of autism. Dozens of studies — Mottron's and others — have demonstrated that people with autism spectrum disorder have a number of strengths: a higher prevalence of perfect pitch, enhanced ability with 3-D drawing and pattern recognition, more accurate graphic recall, and various superior memory skills."

These strengths correlate to those identified by Sowell as typical of late talkers, but Sowell asserts that such strengths are proof positive that late talkers aren't in fact autistic. That and "he attended college!" And hundreds, if not thousands, of parents cling to the "Einstein Syndrome" based on this type of specious logic and anecdotal nonsense.

The icing on the cake: experts speculate that Albert Einstein, the beloved namesake for the "syndrome" Sowell coined, may have actually played for the other team. Ditto for Beethoven, Mozart, Hans Christian Andersen and Immanuel Kant.

Report from Late Talker Group

I've been a member of the late talker group for a few weeks now. The syllogism that provides the foundation for the group philosophy is: (i) autistic children are generally retarded and know little about human nature; (ii) their children are intelligent and relate to humans; (iii) therefore, their children aren't autistic. The group counsels its members on how to dodge the diagnosis, likening the push to diagnose and diagnose early as a witch-hunt.

I categorically reject the syllogism. As neuroscience is beginning to demonstrate and as high functioning autistics have been blogging, individuals with ASDs are often much more intelligent than people give them credit for. Tests that rely heavily on language don't sufficiently measure their intellectual capabilities.

That having been said, I'm not sure that there's any harm in the late talker group. The parents hold their children in high regard intellectually, in spite of their developmental delays. Are the children handicapped by their parents' insistence that they're not autistic? My sense is they're not. The late talker group advocates Floortime and other "naturalistic" methods of teaching language. So while I disagree with the philosophy, I think the end result is generally positive.

Update: In the spirit of peace, I've deleted the portions of this post.

Update #2, January 14, 2010: I'm adding an update because I noticed an uptick in traffic for search terms like "late talker and denial". I originally authored this post almost two years ago. Here's what I think now: The line between autistic and not autistic is blurry at best; science has yet to explicate what autism actually is. A parent should be able to contemplate that their child is autistic without being castigated, or worse yet, being met with a chorus of "don't give up". Autism is not a scarlet letter. It refers to neurological difference that impairs communication and social skill. In many cases, it also engenders strength and talent. As for the group, dodging doctors and getting mad at the world for observing the obvious is not healthy. Nor is relying upon groupthink (with strong censorship) for medical advice. And speaking of censorship, the lack of a tolerance of criticism or even diversity of ideas is a clear indication of how weak their own ideas are. Strong ideas can withstand scrutiny. Theirs cannot.

I'm on the beat.

In an effort to gain perspective from a variety of sources, I joined a Yahoo group for parents of "late talkers." It's a prolific group with hundreds of members who believe that their children have Einstein Syndrome, rather than autism. And for the record, I believe that many children that talk late DO fall into the category of "late talker" rather than autistic.

The group has a great resource page, with plenty of links to helpful material for late talkers. So far, the group comments have been comprised mostly of exchanging tips ranging from things like preschool to flashcards.

One commenter, however, confirmed what I feared. She posted that her daughter was displaying echolia at 3.5 years, uttering scripts at inappropriate times, clearly a red flag for autism. She wrote that she was crying as she was typing the email. So, the group has a seductive quality for people who aren't ready to accept the truth. My heart goes out to her, as I'm going through that acceptance stage myself.

I'm going to continue to keep my ear to the ground and keep up with the late talker community, with attention to keeping denial in check. I can't go back into denial, and go through this acceptance stage again. But I do want to explore therapies that work for late talkers. Plus, as my pediatrician points out, there is an aspect of self-preservation among the early intervention community. To the extent there is a bias in favor of over-diagnosis, I can only benefit from gaining perspective from outside of the early intervention community.