This past weekend I attended a training on administering the ADI-R, a diagnostic measure for autism spectrum disorders.  This training was scheduled from 8 AM to 5 PM, Saturday through Sunday.  At first, I thought, “goodbye weekend, nice knowing you,” but as I prepared for the training last week, I came to appreciate several things about this measure and was even (dare I say it?) a little excited to learn more during the training.

For some background, the ADI-R is an interview between a clinician or researcher and the parent or caregiver of an individual who could potentially have autism.  There are 93questions in the interview, each designed to get at a certain aspect of behavior associated with autism.

One of the things that stuck out me was a sentence I came across in the manual for the ADI-R:
… from the point of view of the [clinician], the interview needs to be highly focused, rigorous in its coverage, and thorough in its resolution of discrepancies; however, the [parent] should perceive the interview as a relaxed conversation about matters that are felt to be important in the family.

The interview should be a conversation.  This concept aptly captures my view on the public communication of science, especially in terms of autism.  Autism researchers should be highly focused and rigorous in their pursuit of the cause of this disorder. They should also bethorough in resolving discrepancies between scientific findings.  But the public should be introduced to autism research in the form of a relaxed conversation about matters that are felt to be important in the family. Parents of children with autism don’t need to hear about significant p-values or double-blinding.  What the scientific community should provide is a conversation, one that explains how findings relate to every day life with an autistic child.

Starting this conversation may sound tricky or even impossible, especially to a researcher with publications to submit and grants to propose. But when it comes to scientific research, the risk of an uninformed or potentially misled public is too great.  It’s time for us to talk.

Reference: Rutter, M., Le Couteur, A., Lord, C. (2008). Autism Diagnostic Interview-Revised. Los Angeles, CA: Western Psychological Services. 
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Photo credit: http://blog.keepstream.com/2011/02/twitter-chats-hashtag-conversations/

​[This post was originally published at my previous blog, Neurolore.]

OK.  So I’ve needed to get out of this not-blogging-but-wanting-to-but-then-still-not-doing-it rut for a while now.  The problem has been that I think and read about the brain all day.  So when I get home, I just want to watch The Voice, eat ice cream, and ignore a pile of homework on my desk (at least for a little while). But a friend’s new project to get back on the blogging wagon and my husband’s encouraging words have given me new inspiration.

Hence, Tuesday Thoughts.  Why Tuesday? Because it starts with “t” (who doesn’t love an alliteration?) and because by Thursday, I’m too backed up with work to even dream about blogging.

So here goes…

{Tuesday Thoughts 4.17.12}

One of the things that drew me to autism research was the enigmatic nature of the disorder.  The volume of information we don’t know is astounding, making for a compelling and all-too-important area of study.  Even looking at the brain in general, the processes and circuits scientists have figured out number few compared to the myriads of things that remain unknown.

Here’s an example. Someone with this brain, if even alive, should be severely impaired, lacking basic life sustaining functions, language, emotion, motor capabilities, among many other major things.

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Nope. He’s a father of two and a french civil servant, whose extremely unique brain was only discovered because he went to the doctor due to mild weakness in his left leg.  As a baby, this man suffered from hydrocephalus, a condition caused by many factors in which the the fluid that cushions the brain inside skull begins to build up.  Needless to say, this is a very severe case. The fact that minor leg weakness and a below average IQ of 75 are this man’s only impairments is unheard of.

My thoughts on this Tuesday? We can study the brain for centuries more and we will still encounter cases like this.  Ones that challenge the most basic understandings we hold dear. Ones that drive us to humility and even leave us confused.  May we always respond with awe at how little we know.

Reference:
Feuillet, L., Dufour, H., & Pelletier, J. (2007). Brain of a white-collar worker. The Lancet, 370, 262.

[This post was originally published at my previous blog, Neurolore]