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.

Thursday, October 9, 2008

This Thing is Like That Thing, Part II

Shades of Einstein redux. The London Times [via About.com] reports on a new study showing that autism genes "add up to genius":

The finding has emerged from a study of autism among 378 Cambridge University students, which found the condition was up to seven times more common among mathematicians than students in other disciplines. It was also five times more common in the siblings of mathematicians....

Separate studies have shown that the fathers and grandfathers of children with autism are twice as likely to work in engineering.
Correlation between autism and having a father in engineering is, in part, what drew me initially to the Einstein Syndrome when Brad was first flagged for autism, and I had a rather myopic view of what autism is. My husband went to MIT, my father in law is faculty there, and my grandfather was also an engineer - all signs that Brad had "einstein syndrome." This seemed like a suitable life-raft for me to cling to at the time.

I've since rejected the einstein syndrome hypothesis for several reasons which I have blogged about. The study excerpted above is further evidence that the genius/idiot paradigm upon which the Einstein Syndrome rests is false.

The London Times article quotes autism research luminary Simon Baron-Cohen:

Our understanding of autism is undergoing a transformation.

It certainly is. Certain present company excluded.


Quirky Mom said...

You know, that article actually wasn't too painful to read. (And as a scientist, I often find popular science articles excruciating.)

That is my way of saying thanks for sharing a great article!

Laura said...

hehe - as a layperson, I share your pain at times. Glad you like it...

jrandom42 said...

Some additional floats to the liferaft from Eric S. Raymond and the New Hacker's Dictionary.

A Portrait of J. Random Hacker


Laura said...

hacker syndrome, eh? not bad.

polly said...

I started January of this year with similar concern about my daughter (she was almost 3). My daughter's initial assessment, (formal, by a developmental psychologist specializing in autism), lead me down a different path than you.

My exercise in earning a google PhD has lead me to these phrases:

semantic pragmatic disorder
receptive language disorder
mixed expressive-receptive language disorder
specific language impairment
motor planning soft signs

Right now, my daughter doesn't have a diagnosis, only an assessment of "severe receptive and expressive language delay with possible motor planning issues." But always, I know that if I really wanted to get a PDD-NOS diagnosis, I could easily find a doctor to give it to me.

From what I can tell there is no professional consensus on what these different diagnosis mean, although they all seem to describe overlapping (often identical) traits. My own take involves a lot about personality, and the pathologizing of personality, because personality as described by the Myers-Briggs Type Indicator, is my obsessional interest (or at least it was before what I like to call "Autism Scare 2008"). So often, I read descriptions of autistic-type symptoms that I already strongly identified with specific personality types.

What I've found is that in places like Wrong Planet, people are aware of MBTI and that many of them type INTJ or INTP, which are among your typical engineers, and a tiny percentage of the overall population. Incidentally, Einstein is often anecdotally typed as INTP.

I'm not really sure why I'm posting this here. It's just my brand of crazy. But I do think that a lot of kids who outgrow their diagnosis might just be these personality types. Your little guy looks like that to me, given the videos and how you describe him. I wish I could say the same for my little girl.

Patience said...

And a lot of kids DO outgrow their diagnosis. Even my dd's doctor admitted this.
Stanley Greenspan also uses the acronym MSSD or multisystem developmental disorder.
One of the reasons people will take a fixed label is to get government money (at least in my province; don't know about the US) and to get specific services.
For us; getting a label was absolutely useless except for the money and I'm still convinced the original dx was wrong.
To me if you can go to different specialists and get a different dx each time; how accurate is the original one?
BTW; this is no slight on anyone accepting any dx; just our situation.

Laura said...

Polly, very interesting. But I don't understand - how could personality cause a language delay or hypotonia? It seems more likely that the correlation (between personality and dx) is incidental. With respect to a language delay or hypotonia, there has to be something else neurological going on. My husband has the engineer personality, but his personality never interfered with acquisition of language or cognition. btw, thanks for the note, and good luck with your journey, where ever it takes you...

Patience, I hear you and I agree that there isn't a uniform consensus as to how to apply DSM-IV. I'm not too concerned about the parent's impetus for accepting the label. If the dx has integrity, what difference does the parent's motives make? I'm more concerned about the impetus for dodging the label - the stigma associated with the spectrum.

And from the perspective of what IS PDD - I still don't know the answer, but I'm inclined to say that PDD kids differ from children with the classic autism dx in quantity, not quality. That is, they have the same thing, only less. Hence the name of my blog.

polly said...

I wonder if personality doesn't play a role is how the neurological part manifests. An extroverted kid might act out the neurological glitches one way (perhaps ADHD) while an introverted kid might become more isolated.

Laura said...

Polly - for things like social impairment and weak eye contact, that may be plausible (although I personally don't believe that to be the case). The reasoning is, some people just don't like to make eye contact. However, I don't think sourcing the condition to personality is even remotely plausible for the hypotonia and dyspraxia. Question: do you think it's a coincidence that your child has a language disorder and a motor planning disorder? And if you think they're related, then why would reject the unifying dx (PDD) in favor of an amalgam of symptoms, which are essentially connected? The latter approach seems to be less analytically useful. That having been said, don't get me wrong - I have held, and until science makes a quantum genetic leap, I will hold that there is more than one way to skin this cat. I'm just curious about your situation because your POV seems progressive and thoughtful.

polly said...

The thing is that the "possible motor planning issues" were brought up by a semi-professional after a brief observation, not by the developmental psychologist who formally assessed her. I'm not sure she actually has motor planning issues. She's met, usually early, all of her developmental milestones and when she decides she wants to accomplish something, it gets done. She's iffy on following instructions but, in my opinion, it could be just language. At this point, I'm not rejecting the initial assessment, I'm just paying more attention and haven't yet reached my own conclusion.

I said that MBTI was my obsessional interest. I meant that without any tongue in cheek. I've read whatever I could get my hands on and I went through a period where I was aware of glazing people's eyes over, much the way I did when I went through my dictionary obsessional interest. Seriously.

But while I was reading up on personality, and before I was even remotely aware that my daughter was more than a perfect fit for my family (imagine how guilty I felt when I found out that "perfect fit" translated roughly to broken out there in the world), I read about how at one clinic specializing in eating disorders they administered the MBTI and found that almost all of their patients with bulimia and anorexia (this is from memory which is not completely reliable so rather than look things up, I'll be vague), fell into either INFP or ENFP.

Personality is represented by a binary system but in reality it's more of a dial with degrees. And certainly this is not true science but I don't feel out of line because none of the people who evaluate my daughter seem to be scientists either. So what if someone represented the extremes of introversion, intuiting, thinking, judging--well, in a lot of ways they might appear to have a disorder. Same for any type, although some would be sociopaths, narcissists, whatever.

But I read the Einstein Syndrome and they seemed convinced environment couldn't play a factor because some kids in the family talked fine. Well, I think mixing personalities is like mixing chemicals. If my daughter had extroverted tendencies she might have pushed for more interaction from me and my husband, and for more language. If we had extroverted tendencies we might have been more in her face. Isn't that what therapy is, to a large extent, systematically getting into a kid's business and forcing interaction. Many parents I know do this without being told. I watch them now that I know what to look for.

Me, I needed to be told. So I've got this kid, who has some language delays, but none of the social signs of autism (I got the floortime book that you, inadvertently, recommended and I'm reading it). My kid, as the developmental psychologist who evaluated her (one specializing in autism), is not autistic. But she sure does have some of the secondary characteristics. But what the book seems to be saying (as of chapter two and an introduction) is that the children miss milestones and that these milestones can, in many cases, be recovered changing the child's fundamental way of being rather than just rescripting.

I'm not saying there isn't an underlying problem, but I really think that there is primary nature, nurture, and disorder acting together to create an overall way of being in the world. I think there is a reason why these kids have so much engineering and math and music in their backgrounds (and pilots, almost always ISTP types). I think that it's not only the genes that we pass to our children but that we have a real difference in our way of interacting with them based on our own personality type.

I would never have asked my daughter, over and over, to give me her doll. I seldom commented on her art projects (and I never asked her to show them to me because, hey, I could see them) although I always provided the materials and was very proud of what she was doing. I loved her tons, but I talked to her much less than most parents would have (although I had lots of repetitive songs I would sing during things like bath and diaper changing) because, hey, it wasn't like she could understand me.

I'm not blaming myself or other parents, I'm just saying that there is a difference in how engineering types interact with the entire world, including their kids. And there is a difference in how different kids react to that reaction. I think my daughter was content with the quiet companionship. It worked for us and it wasn't until we went into the world that we came up against something that told us different. Truth be told, I considered the way most people parent to be annoying. I hate repeating myself, having things repeated to me that I heard the first time. I need a good reason before I'll tell my kid not to do something, so unless it was dangerous, I wasn't giving her a lot of instruction. When it came time for her to feed herself, I just put the spoon on the table--I never told her how to pick it up, I just let her ignore it until she decided to try it.

If we can force those brain connections and rewiring during the toddler years, why couldn't it be so in the first months?

These thoughts aren't completely formed, I guess. I'm really just having a conversation, not posing an argument. Really, I just like what you had to say, and your year has been similar to my year, what with all the crying and the googling and the dwelling in the borderlands between language disorder and ASD. I'm not trying to convince you. I like being disagreed with (as long as it's based on some kind of reason) and I wouldn't have done this in the comments, but I couldn't find an email link, so there you go.

Laura said...

ha! you weren't kidding. You've given me a lot to think about. I've come across this issue, i.e. the pathology of personality, before, but never as evolved as what you have presented here. The bulimia example is compelling. What about ADD?

Brad has an older typically developing sibling, so I never considered that Brad's condition is in part my parenting. Brad's brother is like the embodiment of sociability, and I didn't do anything different.

I still see a lot of limitations with the theory that personality is being pathologized with respect to PDD, mostly because I regard autism as a neurological condition, not a psychological condition. Of course, this is another issue about which reasonable minds can differ.

But how does a psychologist account for impairment in executive function? Temple Grandin analogizes the brain to a corporation, and likens autistic individuals as having operating offices that don't talk to the chief executive office. Going back to hypotonia and Brad, in lay terms, hypotonia (when co-morbid with dev. delay) results from the failure of the brain to send "ooomph" to the musles. Severely autistic individuals describe the experience of wanting to do something, but the body doesn't comply. Brad's hypotonia is empirically observable - from his trunk strength, to his finger grasp, to ocular movement (i.e. "tracking"). He doesn't have severe hypotonia - he met his gross motor milestones as a child. But it is observable, and outside of the range for normal variation. So what's a psychologist going to do with that? I'm not asking to be facetious - I just don't know. And that's why I tend to place more stock in developmental pediatrics and neurology.

ps if you don't mind, I'm going to turn the theme of this convo into a post - on Friday

jrandom42 said...

The Print Version:

Notice it's published by MIT Press. Who would know better? :)

polly said...

My daughter does not have observable hypotonia, if anything a few people have mentioned that she's "really strong" and "she can throw really well." But I have a nephew with MS who has brain damage that, from what I have been told, is observable when the developmental pediatrician looks into his eye. And yet my nephew seems to have overcome a lot of the physical issues (not the fine motor) that the pediatrician would expect. To paraphrase what was paraphrased to me "it might be because he works to keep up with his (same age) siblings". His personality is very social, he's not at all a perfectionist or self-conscious, he doesn't want to be left out, he is self-motivated to push himself against what would be an observable obstacle. If it had been my other nephew (or even my daughter), who's very introverted, he might have stayed in the corner by himself rather than cludge his way through a play activity he wasn't going to be able to immediately master. So the condition, which obviously exists in and of itself, would be compounded by personality.

As for ADD, and I know I'm just spouting on this, I've been known to joke that the introverted SP types get that label (extroverted ones get ADHD), the NT (intuitive thinking, not neuro-typical) types get ASD. This joke assumes that there's a good chance they all have the same neuro-atypical glitch firing in their brain.

The people making the rules, who decide what acceptable behavior is, are usually SJ types (most elementary school teachers are ESFJ, I read that in People Types & Tiger Stripes), so SJ kids (who are wired to be cooperative and follow the rules, and generally are the kind of kids unimaginative teachers like to have in classrooms) get to have standard language disorders. There aren't all that many NF types, but I'd say they land in with the ADD or the ASD depending on their total personality mix.

Again, this is just spouting nonsense that kind of makes sense if I want it to.

My own daughter's initial evaluation, just before she turned three, was that she was introverted and marched to her own drummer but she was completely normal and healthy. A series of concerned non- and semi-professionals were the reason I initially sought the evaluation and also the reason I have never completely embraced the neuro-typical assessment. We had a follow-up evaluation six months after the initial (same person), and it was allowed that there is something up with my daughter's language (clear receptive and expressive delays, learning language by scripting). We were advised to continue on the course we'd already chosen (speech therapy once a week, preschool five mornings a week) since it seems to be working.

Primarily, I have concerns about the way my daughter is acquiring language, some differences I see in her play (which could be because of language), some noise sensitivities (also maybe the same thing that is going on with her language).

Mostly, like you, I believe it is possible to be a little bit autistic and that there are a seemingly infinite number of ways to do that.

I'm not going to let myself miss anything or assume that my daughter's appropriate eye contact and ability to initiate social interaction means that the other stuff going on with her doesn't fall somewhere in the borderlands between ASD and simple language delay (and even neuro-typical development). I'm going to look at everything, use what works, dismiss what doesn't, and help her as much as I can. For now, I think that means keeping her quirks as private as possible so that people interact with her as normally as possible. Later, I might change my mind.

Laura said...

jrandom42 - oh yeah, MIT press - no big surprise there...btw, off topic - I wasn't kidding about my professional recruiting idea from way back when. I'm going to have to make that happen one of these days.

polly - damn, that's a lot of acronyms.

I keep an open mind and reserve judgement too. You never know what science will unearth by way of genetic research.

Patience said...

To Polly (and anyone else_

Never underestimate the value of testing for auditory processing disorders. There are now many proven therapies (for the right child) that work to improve and build new connections in the brain. www.scilearn.com.
An interesting book to read on this and other brain related subject is How the Brain Changes Itself.
Polly; if your child has auditory sensitivity; chances are there are other auditory issues as well. It's hard to learn to talk if the language you hear sounds like a badly tuned radio station.
There is an interesting site on this called www.ncapd.org that gives samples of how a CAPD child might hear things.
Anyway I just wanted to mention this as useful information to do with what you will.