Much discussion of late about rising rates of autism in the population. Is there any data comparing the frequency of autism in the U. S. as compared with other countries?
Here are some articles with numbers:
In countries that keep track, there’s been a rise, but the rise in the US is greater. You have to understand that the US has the most liberal and inclusive definition of autism anywhere, though, and has seen a drop in diagnoses on mental retardation as autism has risen.
It makes perfect sense that autistic children would be misdiagnosed as mentally retarded-- first, the definition of both conditions has changed, but more importantly, until 1974, there was nothing, educationally, for autistic children in the US, and the diagnosis was a dead end, unless the parents could afford expensive psycho-analytic care, which was a dead end in itself, because it was based on a false theory, but was better than the state institutions where autistic children usually ended up. There were schools for the mentally retarded, and autistic children were better off there than in institutions for the mentally ill.
On top of that, until about 1990, all autistic children were assumed to be mentally retarded unless there was strong evidence to the contrary; which diagnosis was primary was a major debate, and most parents preferred MR, as it carried less stigma, so a lot of children who were thought to have both conditions were statistically “MRs.”
Now, MR has more stigma than autism, so people would rather have the latter diagnosis, and when it’s hard to distinguish (as in a toddler) a tentative diagnosis of PDD-NOS used to be given, but now it’s “ASD”-- autism spectrum disorder. Technically, that could turn into MR later, but it rarely does. The only children who get MR diagnoses these days are generally children with something like Down Syndrome. Children who are physically normal, but appear to have some kind of developmental delay almost always get an ASD diagnosis.
It really doesn’t matter as long as they get the correct therapy, and that’s a big storm. For most autistic kids, that’s ABA. ABA may help mildly retarded children, but they need other kinds of help as well, and more severely retarded children are not helped by ABA. They need tons of occupational therapy, something autistic children need, but need significantly less of with a good ABA program.
So, that was way off-topic. But, the salient point-- if another country doesn’t define autism exactly the way the us does, comparison isn’t meaningful.
I hope this isn’t too far off topic: Is there evidence that anything but the rate of autism diagnosis is increasing?
The case of South Korea is informative.
IOW - using the spectrum definition used in the study the likely true prevalence of autistic spectrum disorders (if everyone was screeened with such tools) is likely close to 2.6%, likely has been close to 2.6%, likely will continue to be close to 2.6%. Drastically smaller numbers reported in the past are likely the result of missing the vast majority of those who would fit into that spectrum definition and the smaller numbers still reported likely reflect how many cases we still miss. The actual study if you want to see it.
An article directly addressing the op.
Detailed information available in the article, but bottom line is that as TP speculates we only really know that the rate of diagnosis/labelling is increasing; speculations about any possible true increases in incidence are, well, speculative.
Isn’t it quite expected that the frequency of every diagnosis would be increasing since the population of people is increasing? Are the stats adjusted for that?
“Frequency” is a way of standardizing the number of diagnoses across the population. So no, you wouldn’t expect this number to increase just because the population increases.
The OP refers to rising “rates,” which refers to ratios. So yes, increase in population is accounted for whenever you deal with percentage changes.
Such statistics are usually quoted relative to the population, i.e., instances per 100,000 and so forth.
The argument against diagnosis driving the autism increase is that most of these kids would have been diagnosed with *something *- other syndromes, retardation, even ADHD… and those diagnoses are not falling in anything like the proportion of increase of autism diagnoses.
The argument against autism as a fad or “mommy support” diagnosis is that few disabilities are more underfunded and undersupported; in most localities, it takes hard-fighting parents well-armed with the right information to get anything other than useless, brief school-based programs. There’s no advantage on any level for making false, erroneous or misdirected diagnoses; it means about a 95% chance that your kid will be shunted into a worst-case situation: all the disadvantages of a special-ed placement that either do not address the “correct” diagnosis or do very little to fix a genuine autism issue. You might as well argue that kids with undifferentiated stomach pain are being over-diagnosed as having an incurable cancer: there’s no upside to it.
As to your argument the first -
- No, they would not need to be diagnosed with “something” previously any more than many now labelled with ADD would have to have been diagnosed with “something” a few decades past. Many now identified would have just been called “odd” or “geeks” or “behavioral problems” or more often just ignored as they become more socially isolated, possibly bullied, and inexplicably failed some classes even though they knew all the facts. That is the point of the South Korea study: the bulk who fit the broad spectrum label are unidentified functioning (perhaps not so well or perhaps adequately enough) without services.
- Diagnosis is not either/or. The diagnosis of “mental retardation” does not decrease when some are labelled as having both “mental retardation” and “autism.” It is not always diagnostic shift, it is also diagnostic addition.
Your argument the second -
- Identifying, accurately, more of those who have been previously unidentified, those who are mentally retarded and autistic and those who are on the spectrum, is not a “fad” and it useful to those so identified and those around them. You confuse an increase in diagnosis with misdiagnosis; IMHO such is not the case.
- As a pediatrician I have had no parents unable to get Early Intervention Services with the diagnosis of, or even suspicion of, autism. I have seen no parents who have had more difficulty getting needed services because they have had the label attached and many who have been able to get services precisely because the label opened doors. For some of the highest function in the spectrum services are not even needed in great amounts: some social skills training and support; some groups. Just as important is the knowledge of what techniques and approaches have worked for others, what sets of weakness and difficulties are likely coming, how others have dealt with them most effectively, and what strengths are likely able to be built on. See for example the material in this pdf beginning at pg 71 which gives teachers and parents a heads up to be aware that a child with Aspergers will be able to recite loads of facts yet may struggle with the abstract concept that ties those facts togther and with applying that concept in a flexible manner, and which gives particular tactics to help such mainstreamed students do better.
True we fall to the magical thinking that naming something gives us power over it and yearn for labels other than “odd” or “failing to live up to potential” or “difficult” … equally true is that an accurate label of even high functioning autism or Asperger Syndrome does give us some knowledge and trite as it may sound, knowledge really is power.