

Writing about autism science? 10 things - tokenadult
http://www.emilywillinghamphd.com/2012/08/writing-about-autism-science-10-things.html

======
lutusp
For some reason, the author of the linked article didn't include a link to the
op-ed piece under discussion:

[http://www.nytimes.com/2012/08/26/opinion/sunday/immune-
diso...](http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-
and-autism.html?_r=1&pagewanted=all)

I emphasize I'm not drawing or suggesting a conclusion about the merits of the
argument presented there. For readers who don't read much science journalism,
the op-ed piece needs to be taken with a grain of salt, and I agree with the
author of the linked article that the present state of our understanding of
autism is a great deal less certain than the statement "An Immune Disorder at
the Root of Autism", as though a consensus has been reached. No such consensus
exists or is imminent.

An example of the kind of argument in the article is this: "One large Danish
study, which included nearly 700,000 births over a decade, found that a
mother’s rheumatoid arthritis, a degenerative disease of the joints,
_elevated_ a child’s risk of autism by 80 percent." (Emphasis added.)

The word "elevated" sugggests a cause-effect relationship that hasn't been
established. It is more accurate to say that there is a correlation between
the mother's rheumatoid arthritis and the child's autism. There's no reliable
basis for saying that one caused the other.

It will be a supreme irony if the present true autism rate is traced to our
clean modern world, the world so often praised as self-evidently better than
the dirty environment our ancestors lived in. It seems there's a
circumstantial association between modern cleanliness and asthma (the so-
called "hygiene hypothesis").

I emphasize that these are conjectures with no solid scientific backing, just
like the op-ed piece.

~~~
tokenadult
A couple days earlier, the biologist-parent author of the submitted blog piece
on how to write about autism wrote a specific reply to the New York Times
opinion piece (which I submitted to HN for discussion

<http://news.ycombinator.com/item?id=4435190>

the day it was published). Her reply post

[http://www.emilywillinghamphd.com/2012/08/autism-immunity-
in...](http://www.emilywillinghamphd.com/2012/08/autism-immunity-inflammation-
and-new.html)

was drawn to my attention in an email from a local behavior genetics
researcher this evening, and that prompted me to read several of her posts.
Seeing that the first reply here is by a fellow participant on HN who reads
good sources on these issues, I look forward to some good discussion here.

~~~
lutusp
> Seeing that the first reply here is by a fellow participant on HN who reads
> good sources on these issues, I look forward to some good discussion here.

That would be nice, but given the topic and its emotional undertones, if this
comes to pass it will be quite a balancing act.

This topic suffers from the burden common to all scientific topics that bear
on the lives of parents and children, and in that connection it reminds me to
some extent of the vaccine controversy (indeed, linked in the minds of some),
in which a single individual with a vested interest in a specific outcome
created something that appeared at first glance to be a legitimate connection,
but by the time he was unmasked as a fraud, the damage had been done. My point
is that, had the topic been anything other than autism, the episode could not
have unfolded as it did.

In Ms. Willingham's reply, I particularly liked "I’m sure the party has just
begun. Accurate science, however, likely won't be one of the attendees."

In most circumstances the science journalist's tendency to use words like
"linked" as a synonym for a cause-effect relationship that hasn't been
demonstrated to exist, and for those associations to ride unchecked into the
the public's mind, is deplorable but not tragic. In this case, the outcome may
be tragic.

The author of the NYT op-ed piece segues through conjectures and "links" at
length and ends up discussing drug (and parasitic worm) remedies with respect
to a condition that no scientist is in a position to either identify or
associate with autism.

The fact of the piece's existence, and its wide readership, testifies to the
desperation felt by the public, given the _diagnosis_ rate of 1/88 among
American kids (1/54 among boys). I emphasize that this is a diagnosis rate,
not an occurrence rate, and it's now widely recognized that diagnosis greatly
outstrips occurrence, to the degree that the diagnostic criteria are being
reworked to produce a more realistic connection between diagnosis and
incidence:

[http://www.nytimes.com/2012/01/20/health/research/new-
autism...](http://www.nytimes.com/2012/01/20/health/research/new-autism-
definition-would-exclude-many-study-suggests.html?_r=2)

And Asperger's is being abandoned as a diagnostic category:

[http://www.nytimes.com/2009/11/03/health/03asperger.html?pag...](http://www.nytimes.com/2009/11/03/health/03asperger.html?pagewanted=all)

My point is that people are proposing cures for a disease that not only has no
known cause, but isn't even accurately diagnosed. As much as people would like
to see the rabbit come out of the hat, it's far too soon for sleight of hand,
and just about time for serious, dispassionate science.

