US Medicine: 97% of All Autism Cases Went Undected - Until Now?

If autism has always been with us in the same high numbers that we see today -- as some scientists and academics contend -- then we should be able to identify the 1 in 150 adults currently living with autism in places like the US and UK.

With all of the media attention on autism these days, one would think that many more adults with the disorder would be seeking out social services, adult education and job training programs, support groups, and other ways that would help their numbers be counted.

Not all adults on the autism spectrum are aware that they have an ASD, and others may not be interested in social services, special education or job training. And of course, many of these services are woefully lacking or unavailable to adults with autism.

But still, by any currently available measure, there appear to be many more people under the age of 18 with autism than there are adults with the disorder.

Anecdotally, this is supported by the fact that, when researchers set out to study adults with autism, they can have a difficult time recruiting enough subjects to complete their investigation. One study, proposed by researchers at the University of California at San Diego, had to be canceled for lack of participants, even though they had conducted outreach through community resources, the internet, local media and advertising.

This idea is also supported statistically by recent data from the Public Health Institute of Scotland, which conducted an audit of services for people with ASD in Scotland, and would also suggest that there are more young people with autism than adults.

Investigators could only find, "a total of 645 adults diagnosed with autistic spectrum disorders in Scotland," the audit said, adding that, "we know that this is a significant underestimate of the total number of adults with autistic spectrum disorders from the comments received with these figures and also the large amount of missing data in this table."

I would bet a billion pounds that there are many more than 645 adults with autism in Scotland. So yes, this is probably a significant underestimate.

But by how much? Is it possible that only one in every 110 adults with autism in Scotland is standing up and being counted?

Let's look at the numbers. There are approximately 3,400 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 212 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year. Click here to Download file

If the rate of autism in Scotland had remained unchanged between 1955 and today, then there are many, many uncounted adults going without support, services, or even much recognition.

In fact, at 212 cases on average per year, there should be nearly 6,600 people with autism in Scotland between the ages of 22 and 53 years alone. But only 600 have signed up for any help at all, in a country with universal healthcare, no less.

Which begs a few questions: Where are the other 6,000 people in that age group with autism? Why have 1 out of every 11 adults with autism never sought, nor received, any special attention for their particular needs? Why have they not been counted? And why is there no national outrage over the neglect of so many thousands of fellow citizens going without services that they need?

In a country the size of Maine, with a population much smaller than New York City, it seems that the government would be able to locate and help these people.

Unless, of course, some of them are not there.

Another way to look at this is by examining the historical numbers in the United States. In the 1980's, the reported rate of autism was about two cases per 10,000. Proponents of the genetic theory of autism say that the rate was much higher than that. But by how much? Was it twice that high? Five times? Ten times?

Let's assume the actual rate in the 1980s was ten times higher, or 20-per-10,000. That would mean that, for every child diagnosed with autism in this country, nine others went completely undiagnosed; left to fend for themselves for all the highly specialized medical, educational and social attention and care many children on the spectrum require.

It is surprising, then, that the American medical and educational establishments would so blithely admit to the neglect -- and some would say malpractice -- heaped upon so many hundreds of thousands of American children so clearly and desperately in need (And if you think that services for mentally retarded kids are appropriate for all ASD children, you are wrong).

Is that possible? Yes it is. And, proponents of the autism-is-all-genetics theory contend, it must have been going on for hundreds of years in this country -- a dark spot on our history, if every there was one.

Only, the scenario would be far worse than that. If autism remained unchanged in this country -- at 67 per 10,000 -- for decades after it was defined as a disorder, then from the 1940s to the late 1980's, 65 out of 67 children with autism were completely missed by their doctors, teachers and parents as having the disorder.

It stretches the outer bounds of plausibility to accept that 97 percent of ALL children with autism went undiagnosed until quite recently. And again, it is surprising that the medical establishment would cop to missing nearly all children with autism in their care. It certainly makes them look like the worst doctors in the world.

On the other hand, it does get vaccines off the hook.

Apparently, it's better to admit you utterly failed to notice so many sick kids in your charge, than to admit you may have been part of their etiology -- however haplessly -- in the first place.

This post originally appeared at the Age of Autism blog