Out of Many (Causes), One (Autism?)
November 4, 2008 by Kristina Chew, PhD
Filed under Health
It’s so often said that
If you’ve met one person/child with autism, you’ve met one person/child with autism.
And of course this is true. It’s why, for one thing, I (like many others parents) emphasize the “I” in “IEP”—”Individual Education Plan.” Many’s the time that Jim and I have sat at the table with the Child Study Team and insisted that Charlie needs to be taught as he needs to be taught, not as “autistic children in general.” It takes awhile—weeks, months—for teachers and therapists, for anyone—to get to know Charlie’s patterns of speech and his way of doing things; to know who he is, as an individual. And it’s after this that they can teach him well, and better, even.
It’s said, too, that the cause of autism in one individual may well be different from the cause of autism in another individuals. Indeed, the keynote address of the 2009 IMFAR conference (International Meeting for Autism Research), is entited “Time to give up on a single explanation of autism?” It’s to be given by Francesca Happé of King’s College London. This is the abstract (accessible via this page, which links to a PDF file of the Abstract Book and the Program Book):
In this talk I will suggest that we should abandon the search for a single unifying cause for the diverse symptoms defining autism. I will present recent evidence of behavioural fractionation of social impairment, communication difficulties and rigid and repetitive behaviours in a population-based sample. Twin analyses in the same sample suggest largely nonoverlapping genes acting on each of these traits. At the cognitive level, too, attempts at a single explanation for the symptoms of autism appear to have failed. Instead, different cognitive accounts are needed for the different aspects of
autism, and distinct neural systems appear to be involved. Implications and future research directions will be discussed.
More of what Happé has said about there being no single explanation for autism is here; in particular:
Referring to the Twins Early Development Study, Happé et al. further suggest that this “behavioral or phenotypic separability of the triad of autistic-like traits” is “mirrored at the genetic level”–that separate genes contribute to social impairment, difficulties in communication, and rigid/repetitive behavior. And when the researchers turn to cognitive accounts of autism, they note that, while these have “traditionally aimed to explain all three key features of autism,” that the attempt to pinpoint a monolithic, “single cognitive account for the three core features of autism” is to be abandoned, and “good accounts” sought instead for each feature.
The possible causes of autism are highly varied, from the latest (rain) to the (too familiar) list of genes, the environment, vaccines, pollution. ultrasounds, TV……….. Equally varied are views about what’s “autism” or, rather, what are the “autisms.” There’s frustration with the notion of the autism “spectrum.” There’s calls for designating autism and Asperger’s Syndrome as separate conditions. There’s a lot of dissent about what “low-functioning” autistic individuals needs, versus those deemed “high-functioning.”
Have we gotten into the habit of insisting too much on the differences between one individual with an autism spectrum disorder diagnosis from another? Are we moving away from being able to build a sense of commonality, of share interests and experiences? Has the notion of some kind of e pluribus unum—”out of many, one”—-among autistic individuals been rendered obsolete?
My own son is usually placed at the “lower” or “middle lower” end of the spectrum, due to his cognitive, communication, and other challenges. Accounts by “higher-functioning” autistic individuals of their experiences, struggles in learning and being in the world, have helped and continue to help me in trying to do the best by my son. There are differences, and yet some common thread of certain sorts of experiences runs through these accounts and I like to think (maybe I’m a wishful thinker) that more is shared in common. Of course my son is (as are you, my reader) unique, and he’s also joined to that common thread of being autistic, of having autism.
E pluribus unum.
Maybe it’s me, but if we couldn’t agree on anything else (and some days I wonder if all disability communities are as seemingly contentious), I might hope that basic civil rights and anti-discrimination would be areas of consensus.
If there is one thing Frankie Happe can be relied upon to do, that is to recycle her papers and give the same presentation over again, it sounds like the one she gave this year.
It was not bad at all, I gave it marks for effort, but she could have gone further.
I do not believe that you can say genes cause autism in any direct sense, what they do is create the mileu from which autism emerges as a natural self assembling process.
It is like putting up an easel, selecting all the paints, brushes etc, and then along comes the painter and completes the process, a picture emerges that needed all those components, yes, but it needed something else too.
Another point of relevance is always the Bishop Berkeley element, in that what we observe is socially constructed out of what we look for, those who say autism did not exist before Kanner, have an ontological if not a factual point, one asks if a thing is not observed and remarked upon does it exist?
Well of course like the tree falling in a forest, it is there, it disturbs the air when it falls, but it makes no sound, because for that you require a human presence to codify the phenomenon and make sense of it.
Frankie Happe is on the right road to making sense of it, there are no simple explanations in nature no matter how much the human desire is there for neat answers.
Francesca Happe is part of Robert Plomin’s group which also includes Angelica Ronald. They have developed a questionnaire which has been applied to thousands of twin pairs in the UK. This group are all behavioral geneticists and when they talk about ‘fractionilazation’ they imply that ‘autism’ is a polygenic disorder involving the interaction of multiple genes of small effect.
They have also given cutoff points for the presence of ‘autism’ genes labelling 5% of the top scorers as possesing ‘extreme autistic-like’ traits and 10% of the entire sample of thousands of pairs of twins as possising one or more ‘autistic-like’ traits.
Problematic is no case has ever been published where two or more genetic variants have been identified andd labelling 5 to 10 percent of the general population as possessing one or more autistic-like (social, communicative or repetative) traits the expansion of the definition of ‘autism’ from a developmental disorder to a personality disorder, or a communication disorder or an obssesive compulsive disorder suggests we are headed to a worldwide prevelance of autism ranging from 1/20 (5%) to 1/10 (10%).
To the true believer in behavioral genetics there is no environmental component.
I think one of the challenges that teachers and staff have in implementing an Individual plan for any child is that they are so used to teaching to “homogeneous” groups of kids that they try – consciously or not – to put all kids into some sort of group. Ideally, as I’ve mentioned before, every child would have an individualized education. (The only reason I regret not homeschooling is because of the lost opportunity for providing this individual education for my sons.)
As for all of the possible “causes” of autism, maybe people will eventually start to realize that if so many things cause autism, that maybe – just maybe – autism is a part of the natural scheme of things. And then, instead of trying to mitigate or prevent all of these causes we can focus on what’s really important.
Incidentally why is it that serious research goes on in it’s own way unheard of but the barmy research hits the headlines the world over, I am referring to the rain study, one would suspect the highest density of autistics in the Northwest on that basis, is there anyone NT in Manchester?
It’s Greshams law for research isn’t it. The bad research drives out the good.
Since my daughter has both Down syndrome and autism, I live in both worlds. With DS, there’s no question your child has it. Most people accept that there’s no “cure” since that extra chromosome isn’t going away. There is some discord in the “low functioning” and “high functioning” factions (mostly because those of us with “low functioning” kids get so annoyed that the DS organizations are constantly pushing how “normal” people with DS are–the “high functioning” ones) or the “nutritional intervention” folks.
One thing that I find maddening about autism, particularly regressive or late onset autism, is that your kid seemed “fine” and then not. With Down synrome, you know pretty much from birth.
I haven’t been in the autism world that long, but the number of “factions” is very frustrating. Those who want to cure their kids. Those who accept their kids as just not being NT. Those who feel their kids have been damaged by “something”. All the different approaches to therapies — ABA, RDI, Floortime, etc. It can make your head spin. And people seem to get so entrenched in their positions that it’s really overwhelming to a parent facing this new diagnosis.
Ms Chew
You said “The possible causes of autism are highly varied, from the latest (rain) to the (too familiar) list of genes, the environment, vaccines, pollution. ultrasounds, TV”
Doesn’t the latest information about rain suggest that it is the consequences of heavy rainfall areas .. less outdoor exposure to sunlight, more indoor exposure to chemical cleaners etc. … that are possible causal factors associated with areas of greater rainfall?
Correlations do not a cause make, I though you were a lawyer Mr Doherty.
If a suspect were in the same place as a crime was committed it does not prove they were any more than a passer by does it.
Correlations sometimes occur because there is a third but invisible factor influencing both outcomes, but that is no excuse to claim a smoking gun (fill in your cause of choice, flourescent light, carpet cleaner, wallpaper, sunday supplements on the coffee table, laundry basket, cat litter, electricity socket, the colour purple, barney the dinosaur, the cat in the hat.
The conspiracy therists want it all ways, there has to be some one or something to blame, because nature in the raw is just too scary and complex to be believed in.
If a bear eats you in the woods, it is because someone should have put a sign up to warn you, or the ranger forgot to remove the bears teeth.
Regarding Down’s and Autism –
I was at a workshop last night given by Michelle Garcia Winner who made the comment that in her experience, there are a lot (she wasn’t saying all, mind) of Down’s kids who also have autism and that it’s more common than people realize.
That comment struck me as interesting. With my youngest child, Gillian, my AFP test came back showing a slight risk for Down’s (according to the geneticist, I was barely over the threshold). We did an amnio and everything came back fine but I find it interesting, given that she, along with her brothers and sister, has high functioning autism. Does anyone know if they’ve done any studies regarding Down’s and Autism and if there’s a relationship?
I’m not going to attempt a deconstruct here since I’m a layperson with only a superficial understanding. But I’m struck by what I believe to be a fact that defies the conclusion: autistic sibs rarely are at the same place in the spectrum. I don’t have hard data to back it up, but for anecdotal data, look no further than the family recently profiled on Discovery Network (the Kirton family)(six autistic children all over the spectrum) or the O’Donells (5 autistic children) (also all over the spectrum). Yes this could be a coincidence or a statistical anomaly. But I thought that genetic researchers were increasingly coming to the conclusion that there is a common genetic thread among spectrumites, which conclusion precipitated the Newsweek piece that on the bioethics of genetic screening (”Would you have allowed Bill Gates to be born?”).
“Maybe it’s me, but if we couldn’t agree on anything else (and some days I wonder if all disability communities are as seemingly contentious), I might hope that basic civil rights and anti-discrimination would be areas of consensus.”
I’m not sure you will find someone in the “autism community” (whatever that was supposed to mean now. Quite frankly, I don’t see anything unifying about the concept), or in the larger “disability community” who would disagree with “anti-discrimination” or “basic civil rights”. Worth noting when everyone is so engaged and close to the subject matter, and the divides are so apparent… the binding forces become ignored.
That’s not to belittle the differences (let’s just say I’m not one to preach unity for the sake of unity). But it’s an interesting day to take stock of that, at least.
Cliff
Other causes (and/or their consequences, following up on Harold Doherty7’s comment) would be: MSG, WiFi, milk (if you’re listening to PETA)…..as “head-spinning” as Ecki notes, to the point that it’s hard to know what is best or what to do…….
“head-spinning” as Ecki notes, to the point that it’s hard to know what is best or what to do……
And it depends on who you are talking to or getting advice from. Reminds me of the comment of the Emperor Joseph in Amadeus–”too many notes”.
To be honest, I have found the internet to be a real liability in this regard, although I appreciate the advantages as a medium of almost instant information exchange.
It has created communities, but are they communities that have the ability to really have thoughtful dialogs, find common ground and work together on issues of mutual interest or are they tribes? Right or wrong–to stay centered at all, I have had to filter out alot of what I read on the ‘net…because of the reactivity, incivility and information overload.
Sorry about the tangent, but that’s been on my mind for awhile.
“To be honest, I have found the internet to be a real liability in this regard, although I appreciate the advantages as a medium of almost instant information exchange.
It has created communities, but are they communities that have the ability to really have thoughtful dialogs, find common ground and work together on issues of mutual interest or are they tribes? Right or wrong–to stay centered at all, I have had to filter out alot of what I read on the ‘net…because of the reactivity, incivility and information overload.”
I certainly see the criticism. And the whole factor of anonymity (or just the general nature of the surrounding space) is one to consider, to be sure, when factoring in how it informs communities. I have found myself recently not keeping up with some things for the sake of sanity and going deeper into different individual work (though that’s in part necessity). It certainly isn’t the medium of clarity.
Cliff