December 4, 2006

The Age of Autism: What Newsweek Missed

The Age of Autism: What Newsweek missed
UPI Senior Editor

WASHINGTON, Nov. 20 (UPI) -- Newsweek's cover story this week is about what happens to autistic kids when they grow up. The magazine does a good job of pointing to funding gaps and the plight of parents who can only imagine what will happen to their kids after they're gone.

But Newsweek fails to confront a key issue, one that bedevils mainstream publications every time they write about autism: Is it really increasing? Or are we just doing a better job of diagnosing the disorder?

Newsweek, without exactly saying it, comes down on the side of better diagnosis. " ... (M)ore sophisticated epidemiology has revealed the true magnitude of the problem," the magazine says. It also suggests the increase coincided with parents banding together "to raise awareness of a once rarely diagnosed, often overlooked disease."

Yet in a sidebar, Thomas Insel, director of the National Institute of Mental Health, says that as a psychiatrist in the 1970s he never saw a single person with autism. "In 1985, curiosity sent him searching; it took several phone calls to find a single patient," the article says.

Does today's "more sophisticated epidemiology" really square with Insel's experience? I don't believe it does; 1985 was hardly the dark ages of medical diagnosis. And autism was described as a distinct disorder more than 40 years before that -- concern already had arisen that it was becoming a trendy diagnosis, handed out too freely.

Yet Insel, obviously well-connected to the medical and psychiatric community, had to mount a virtual search party to find a single one?

The article goes on to say that NIMH is "newly interested in environmental factors that might set off the disorder in patients who are already genetically prone to it."

What does it mean to be "already genetically prone" to autism, yet have it triggered only after exposure to some outside factor? I'm not sure that makes sense. What does make sense is that some children might have a genetic inability to cope with that factor, triggering the "environmental insult" that leads to autism.

If such an exposure increased, it could certainly account for an increase in the autism rate. NIH officials are increasingly blunt about this, even if the media are not. At a recent meeting with a group of parents, according to several participants, the head of one NIH institute said: "There are no epidemic deniers here."

I'm told a second institute director said at another recent meeting that autism is primarily an "environmental" disease. An audience member's suggestion that genes alone explain the current rate was flatly dismissed by this official.

Because it doesn't connect the dots, Newsweek misses the point: We're in an epidemic, which is why the future of this generation is a crisis. The article's whole premise, however, inadvertently suggests the truth: There are now so many kids with autism -- "as many as 500,000 Americans under 21," the magazine says -- that caring for them as adults must be urgently addressed.

If there were already a comparable million-plus adults with the disorder, the issue would have been recognized years ago. To be sure, some autistic adults of all ages have been misdiagnosed over the years as retarded or mentally ill.

But if autism has held steady over the years, it shouldn't be hard to find thousands and thousands of clearly autistic people in their 30s, 40s, 50s -- even their 80s and 90s. The first child in the landmark 1943 study identifying autism, who was known as Donald T., is still alive at age 73. It was the striking uniqueness and novelty of such cases that prompted the study in the first place.

When NIMH's Insel went looking for cases in the 1980s, it seems autism was still pretty rare. It's not anymore -- as Newsweek points out, disorders on the autism "spectrum" now afflict as many as 1 in 166 children. Note: children. Where are the 1 in 166 autistic adults?

Until we stop ignoring the obvious, we're never going to stop this epidemic -- and find new and better treatments for people already afflicted.

And that's the most urgent issue of all.


Anonymous said...

I think perhaps that one influential element, it the attitude society holds toward mental illnesses of any kind. I think that perspective of shame may have led to a great number of cases being 'explained away'.
Best wishes

Anonymous said...

My brother, age 27, was misdiagnosed as mentally retarded when he was younger. Only when he became a teenager did the medical community diagnose his disorder as autism. My parents went to several doctors before the autism diagnosis.

I am interested in finding resources for adults with autism. If anyone has resources on that, I would be very interested in them. Hopefully, someday soon we can find a cure and not need those resources. However, as an epidemic, we need to do something about taking care of these adults.

Ginger Taylor said...

Anon 2...

What state are you in? Maybe I can help you find something for him or at least point you in the right direction.

Email me privately if you prefer.

Anonymous said...

Oops... I forgot to include my email information. Please email me at My brother lives in Knoxville, TN.

Thanks, Ginger for this wonderful blog and any help you can provide.

Best wishes,