Managing Editor's Note: Thank you to Dr. Baron Cohen for responding to Anne Dachel's open letter to him (HERE). We need to be able to discuss the future of our kids with the experts and professionals who wield tremendous influence. We might not always like it. We might strongly disagree. But we'd darn well better keep talking - for the sake of our kids who are hurtling toward adulthood. Thank you, Dr. Baron Cohen. And thank you, Anne. Here's the response from Dr. Baron Cohen:
Dear Ann Dachel,
Thank you for your letter. The new research that you referred to showing that autism spectrum conditions are now much more common than they used to be, and which was published in the British Journal of Psychiatry this month, was conducted by our group at the Autism Research Centre in Cambridge.
Using 3 different methods we found that the rate is now about 1% of primary school age children. This was a large study based on about 20,000 children. As you rightly pointed out, this study also found that for every 3 children who already have a diagnosis, there are two more who would meet "research diagnostic criteria". So, if one includes those who are undiagnosed, the rate goes up to 1 in 64 children.
These are very high rates, especially compared to 30 years ago, when the rates were thought to be 4 in 10,000 (using Rutter's estimates). Interestingly, other estimates from the same period (from Wing) suggested autism was much more common even back then (15-20 per 10,000).
I think many children in the old days were overlooked and that we are getting much closer to the true rate in the population these days. In that sense, the fact that more cases are being diagnosed could be seen as an achievement, that we are getting much better at identifying such children. If some note of alarm was needed, perhaps it should be over all those individuals who were missed in the old days, and who are now being better recognized.
I sense that you and some of your readers on this blog wonder why I am not alarmed at what some call an "epidemic" of autism. Personally, I prefer to restrict the term 'epidemic' for contagious diseases, though I recognize others may use it differently. My speculation (and that's all it is) is that we are nowadays much closer to identifying the "true" rate of autism spectrum conditions in the population. In other words, rather than there being some runaway escalation of autism, we have year by year simply become better at detection.
What I am alarmed about is not the increase but the state of services (or lack of them) available for people with autism and Asperger Syndrome. It upsets me deeply that parents may still feel grossly unsupported at home, or that adults with autism spectrum conditions feel totally ignored by the health and social services. It makes me very sad that many able adults with Asperger Syndrome feel isolated and are unemployed. I continue to highlight these major inadequacies in the system whenever I get the opportunity to do so, since we cannot remain silent whilst people are suffering.
With best wishes, and thank you for taking the time to write.
PS: I haven't replied to all the comments in your blog, for which apologies. Some brief final points though:
(1) the increased rate of autism spectrum we found in this new study was by no means just confined to the high functioning individuals.
(2) We have not "sat on this research for years" since as soon as the complex statistical analysis was complete we published it speedily. Research like this take literally years to conduct and complete.
(3) I completely agree that autism must involve both environmental as well as genetic factors (a point that nowadays hardly contentious).
(4) The "assortative mating" theory remains speculative since it has not yet been tested.
(5) The research into the waist-hip ratio was conducted by researchers at Bath university.
(6) I was pleased that your letter was polite and considerate, attributes that are always welcome.