An essential analysis from Emily Willingham of the recent study suggesting that there will not be much impact from the proposed changes in autism diagnosis that will be part of DSM-5. Emily disagrees:
From where I’m sitting, it looks like we’re making an untenable bargain: missing out on more people who have autism to avoid misdiagnosing people as having it when they don’t. The people we miss will live with an unrecognized disability that interventions and supports could help, and the people diagnosed with it who don’t have it will receive therapies that may or may not help them. Is no better option available? I think there is.
Another chapter began in the continuing drama over proposed changes to the way autism is diagnosed. A study published yesterday by The American Journal of Psychiatry indicates that 90% of the people who the current standards identify as autistic would retain that diagnosis with the new DSM-5 criteria.
I was much less worried than many others by previous research that suggested only 45% of the people currently diagnosed would still be labeled autistic by doctors using the new standards, in part because the methodology of that study was so poor and in part because I think doctors will tend to use the standards to help their patients and their families, not to hurt them.
However, comments made by the people who did this new study have me worried in a different way:
“What I would say to families worried about the new criteria is that they’re more open-ended than the old ones,” said Catherine Lord, the senior researcher on the study. “So it’s very important to find a clinician who understands them, and who is not rushed when making a diagnosis.”
More open-ended means more subjective.
The worst problem with the current standards is how subjective they are.
Is Dr. Lord suggesting that the new standards will make the worst thing about the current state of autism diagnosis worse?
And there is a push to diagnose autism more quickly and cheaply, not more slowly and carefully.
I was appalled when the following "quick fact about autism" came through my Facebook feed from the Autism Sceince Foundation today:
It is possible to detect signs of autism in infants as young as 6-18 months. For example, if a baby fixates on objects or does not respond to people, he or she may be exhibiting early signs of an autism spectrum disorder.
You know who diagnosed her baby with autism at six months?
And then she killed him.
Autism is a developmental delay.
Kids have to have had a few developmental milestones before you start saying they have autism.
Diagnosing autism in infancy is foolish and dangerous.
Last week, Michael John Carley reported on GRASP's meeting with members of the DSM-5 committee's Autism Spectrum Disorder Workgroup. You should read the whole thing, but this is the upshot:
Outside of being able to say they met with us and listened to us, I didn’t pick up any other motive on their part for the meeting. They are going ahead.
Researchers at Boston's Children Hospital used EEGs to identify distinct differences between the brains of autistic and neurotypical children. One of the reasons I have chosen not to be too alarmed by the proposed changes to autism diagnosis in the DSM-5 is that I think it is inevitable that in the future autism will be diagnosed not by behavioral checklists but by identifying physical neurologicial differences.
And those differences will have to do with how brains make connections:
The researchers measured EEG patterns in 430 children with autism and 554 control subjects ages 2 to 12. Those with autism had activity patterns that consistently showed reduced connectivity between brain regions, especially in areas associated with language on the left side of the brain.
“The brain works like a series of computers and they have to hook to one another through nerves in the brain in order to connect and function together,” says study author Dr. Frank H. Duffy of the department of psychiatry at Boston Children’s Hospital. “We can estimate from EEGs how well regions connect to one another. If there is high coherence between different regions of the brain, this indicates the brain is well connected.”
Of course, I am excited about this research because it supports my theory that, ultimately, autism is the tendency for brains to "like" making certain kinds of connections and "dislike" making other kinds of connections. This theory is behind my belief that education will continue to be a more effective treatment for autism than drugs or other medical interventions. We need to get better at teaching autistic brains to make specific kinds of connections.
So let's get to work on that.