The big news in the Autism Community the past few days has been the new CDC numbers about the prevalence of autism.
I begin with the usual disclaimer that I'm not a scientist, I'm just a mom who follows this news. My interpretation of the news is my own, and it's not necessarily scientific in nature. If I make a mistake, feel free to offer corrections in the comments, but please be nice.
I often feel frustrated with the state or direction of autism research, but of course I know how hard people are working on this and don't discount their dedication to the matter.
I also don't discount the frustrations of a parent reading the news sometimes. This latest information falls right into that category of "Are They TRYING to Make This Impossible to Draw Conclusions From?"
To start, here are the new numbers:
One in 88 children has autism in the US right now.
Boys are five times more likely to have autism than girls. Among boys, the rate of autism is 1 in 54. Among girls, 1 in 252.
This marks a 23% increase since the CDC's last report in 2009. And, a 78% increase since the first report in 2007. To say that's a big increase seems like a bit on an understatement to me.
To add some color to the numbers, here's one scientist's analysis:
Pat Levitt, director of the Zilkha Neurogenetic Institute at the University of Southern California, for instance, regarded the new CDC estimates as a “fine tuning” of autism’s demographics, rather than a radical rethink.
Click on the link to see why he feels the way the CDC numbers were calculated don't represent a very big increase. So, it's a big increase, but it's not really an increase.
The largest increases were seen in the hispanic and black communities, about which the CDC says, "We suspect that some of this increase is due to greater awareness and better identification among these groups. However, this finding explains only part of the increase over time, as more children are being identified in all groups."
That for me is kind of the kicker, and what is frustrating to me. When questioned at the news conference, CDC director Thomas Frieden said, "doctors have gotten better at diagnosing the condition and communities have gotten better at providing services, so I think we can say it is possible that the increase is the result of better detection."
That seems like a pretty meaningless statement to me. Why not say, "We simply don't know at this point. We haven't been able to narrow it down to any one thing, so it's possible that the increase is the result of any number of things."
Did he choose his words so carefully to quell a sense of panic among parents? I'm pretty darn sure they don't want another "autism is caused by _____ "(namely vaccines) kind of unfounded panic on their hands, so they keep throwing better detection and diagnosis out there in front to take the blame, when in fact they don't seem to be able to say what is causing the increase with any certainty.
I'm not saying that better detection and diagnosis is not factoring in here. It seems pretty clear, especially when you look at the numbers from the minority community that people everywhere are learning what autism looks like and when they need to seek intervention from schools and doctors.
No mention of possible environmental factors at all. A Reuters article mentioned that "Scientists had long estimated that 90 percent of autism risk was genetic and 10 percent reflected environmental factors." I'm not sure where that number comes from but the fact that the CDC doesn't even want to mention it could be seen as a reflection of that estimation.
But a 2011 study of twins by scientists at Stanford University concluded that genes account for 38 percent of autism risk and environmental factors 62 percent.
I'm encouraged to read in the Reuters article that the NIH is undertaking a large scale epidemiological study into environmental and genetic factors. That seems to me to be a giant missing piece.
Add into this mix the fact that the DSM's diagnostic criteria of autism is changing. According to the Reuters article:
The manual has undergone significant changes over the years, including in the diagnostic criteria for autism. In its current version, someone must fit at least eight of 16 criteria, including symptoms involving social interaction, communication, and repetitive or restricted behaviors and interests.
The previous version was stricter, describing one diagnostic criterion as "a pervasive lack of responsiveness to other people." In the current manual, that became "a lack of spontaneous seeking to share .... achievements with other people" and friendships that appear less sophisticated than the norm for a child's age.
The earlier manual also required "gross deficits in language development" and "peculiar speech patterns" for a diagnosis, while the current one lists difficulty "sustain(ing) a conversation" or "lack of varied . . . social imitative play."
One must also keep in mind, that because Autism is a spectrum disorder, autism can look like many different disabilities among a huge variety of children. I know it's hard to draw a line on that spectrum and differentiate, but I think we'd get better information if we could separate kids who are more severely affected from those that are still in a mainstream classroom.
I frankly despair that any real answers can be teased out of this crockpot of information.
One question I would like to see addressed is a look at the increase in special education services in the US. If we could look at overall rates, and they have gone up dramatically in the past 30 years, then to me it wouldn't matter if it's a matter of diagnosis or recognition, it would mean there is a net increase, regardless of how any of these disabilities are labeled.
I apologize for the unfocused, rambling manner of this diary, but the more I read about autism the less I seem to understand.
World Autism Awareness Day is coming up April 2nd, and I'll be writing a diary on that day, but I like to make those diaries a little more personal, so I thought I'd do this more numbers driven diary today and get it out of the way.
Thanks for reading. If you can make more sense of any of this than I can, illuminate me in the coments.