For years, researchers have suggested that the rise in autism diagnoses could be explained, at least to a large degree, by the fact that doctors have new names for old disorders. In fact, they have suggested, people who are today called "autistic" would have been diagnosed with a range of disorders including mental retardation, speech delay, schizophrenia, and so forth.
Others have disputed this idea, asking the question: "If there were children with autism back in the 50's and 60's, where are those adults today?" A new study, entitiled "Autism and diagnostic substitution: evidence from a study of adults with a history of developmental language disorder," may have the answer to that question. The authors of the Translating Autism blog explain how the study worked:
In this study, the authors examined 38 adults (age 15 to 31) who had received a diagnosis of language disorder during childhood but not a diagnosis of Autism. The authors were mostly interested in a particular type of language disorder diagnosis called pragmatic language impairment (PLI), since this disorder has many similarities with autism. The authors conducted full ADOS and ADI evaluations of these individuals. They found that 55% of the participants with PLI met the criteria of autism as indicated by the ADOS or the ADI, and 40% met the criteria of autism as indicated by both, the ADOS and the ADI.Personally, I think there's no question that some - if not many - cases of autism spectrum disorder would never have been diagnosed when I was a child. Many people with high functioining autism and Asperger syndrome made it through school in regular classes, operating at the fringes of the social world. Some did well; others didn't.These findings are consistent with the diagnostic substitution theory. The implication is that a significant percentage of people who were diagnosed with PLI in the past would now receive a diagnosis of autism instead. Likely this substitution is not sufficient to explain, in its entirety, the dramatic increase in autism diagnoses; but it is reasonable to conclude that such substitution could partially explain such increase.
But what's your take on this study? Do you think the substitution theory hold water? Share your thoughts!
I believe some of the rate increases are due to adding the diagnosis to IDEA and the medical field and if you listen to cases all over, parents will still tell you it was hard to get that diagnosis just the same. Prior to this, many were diagnosis and lumped right into mental retardation (MR). Probably the only diagnostic tool back then used was an IQ test. And while looking at public records of schools, one can see IEP’s of MR dropped while autism IEP’s rose. It seems the lumped in diagnosis went from MR to autism.
When I grew up, in school I had no idea where the special ed classes were held. Even though the laws permitted inclusion, not many schools practice this. I never seen any kids with autism, but I also didn’t see kids with MR either. I seen no special ed kids. I did see little busses. Besides that, you also have to look at the social era of the time, and that a disabled child was not so welcomed as they are today by their own families. There was wasn’t the interventions back then. Parents sent their kids away once they got older and one famous movie depicts this event: once the child got old enough and either was too hard to handle or more noticed, they were sent to institutions. many stories still out there in the media about a person remembering a sibling and never being told or knowing what ever happened to them, and one day locating them, in an institution.
Does this information have anything to do with cause? Maybe. Maybe the rates were there all along and so was the cause. No one bothered to look for these kids.
I doubt a study that includes 38 participants where an additional 10 people have been retrospectively diagnosed is helpful to the argument. Certainly the diagnostic criteria have been expanded, certainly there is increased recognition. But the numbers of kids that are damaged today is absolutely astounding. Minnesota recently announced that 1 in 81 children in their public schools are receiving services for an ASD. This does not include the kids with Down Syndrome, ADD, ADHD or cerebral palsy. This study has not exactly identified any hidden horde of autistics. The only purpose to this kind of study is to exonerate vaccines and deny an obvious epidemic.
I politely disagree Mr. Tim Booton. My son is not ‘damaged’, he’s a child and for many of us, vaccines are not the cause for their autism and although I do not know the cause for my child I’d still not think of him or any child as damaged. This topic always spurs vaccines. It seems no one ever wants to admit these poor children were always there but were ignored and hidden. I doubt they’re in the counts today. Did it ever occur to anyone that those kids probably had vaccines too??
I also live in MN and I have to tell you that no matter where you live, the educational system is a poor place to gain autism rates. It also does not depict causes either, since none of us know how many of these kids have a medical diagnosis or just an IEP from the school. Our school district about blocked me from leaving once I said I was also getting a medical diagnosis. If al you have is a school IEP, your child has no diagnosis. In this state, a school can not make that diagnosis. It also doesn’t tell you of which have vaccine waivers and which don’t. educational rates also does not count the kids who already graduated.
I just met an young adult with ASD, who was not properly diagnosed until 14. All those years they were not in any rates but added just at the right time to spike the rates.
I continue to be amazed at the pointlessness of eliciting people’s opinions on a question like this; sure, of course, why not: it’s partly due to how it’s labelled. Nobody can refute that. But does my opinion or anyone else’s move us forward? We need proper research, not opinion. Blogopining is the new opiate of the masses! Blah blah blog.
Gee, Grammar, no one is under any obligation to comment on any blogs at all.
I ask for opinions because I think the topic is interesting, and because there are a fair number of people who would like to express their opinions.
I also ask for opinions on this blog because it gets a reasonable amount of readership, and thus allows folks to be “heard” by a fair number of readers.
Of course, research is important – but few of us writers are researchers. A good place to find details of research in progress is http://www.pubmed.com – a database of published research papers.
Best,
Lisa (autism guide)
I think diagnosis substitution is the main cause of the rise in autism rates. The world was much more toxic and unsafe when I was growing up in the 70’s, so if toxins are the cause there would be a fall, and not increase in autism cases.
I always ask people this question: “How many people were in your graduating class?” The common answer is around 300. Then I ask them if there were at least two kids out of that whole class that were pretty smart but also pretty akward socially? Got made fun of? Seemed weird? Well there is you 1 in 150.
I also think a lot of the people were mis-diagnosed with mental illness or jailed for commiting violent crimes when they had severe impulse control issues that were never addressed, I can go on and on….Thanks for giving us a place to speak, Lisa. I for one appreciate it.
This is in response to Leila
The world may be less toxic, gut the people sure arn’t.
check out this information http://www.ourlifeline.net/andbabymakes3.htm
To AutismMomandProud: I was in a Gifted Classroom in High School and certainly had at least two Asperger’s classmates. My cousin (10 years my senior – I’m approaching 40) is Asperger’s. My Grandma, if born today, would probably be considered PDD-NOS. But she was born in 1898.
Leila, I think there have always been there. We just didn’t know where to look. Thanks for the support.
Thinking back, I knew several kids in my accelerated classes who almost certainly would have been diagnosed as somewhere on the autism spectrum today. Lack of consistant eye contact, not understanding social cues, slightly “off” as far as matching up to the rest of the teenage fashion herd etc. Obviously they were bright, and verbal enough to “pass”. Not the popular kids, but they were accepted as an integral “poindexter-ish”part of the crowd…I wonder if they would have preferred a diagnosis and special supports? Maybe and maybe not.
Just makes me wonder if any one will ever be called just plain wierd ever again? Now I hear people shrugging off unpleasant behavior by someone in their class, or their kid’s class, by saying “Oh well, you know he’s autistic!”
I think it is obvious that doctors who were once maligned for their lack of diagnosing ASD, have now gone gung-ho in the other direction. Does every child with a passionate interest in math and technology, or an introverted personality, or a narcissistic one, now get diagnosed with ASD? Even some not uncommon early childhood language delays now trigger an almost automatic pdd/nos diagnosis. I believe this accounts for so many “miracle cures” we are presented with every day. Overdiagnosis.
Is this question a joke? Diagnostic substitution? Should we also keep arguing whether the earth is the center of the universe? There are quite a few things which make this discussion ludicrous.
-For one, that bastion of radicalism, the U.S. Census Bureau, holds the truly final word on this: there was not a large enough mentally disabled population in the U.S. fifty, one hundred or one hundred and fifty years ago within which to HIDE the a comparable number of children who currently have disabling forms of autism. The rate of mental disability 150 years ago was .2 per 1000– a number which accounted for a range of mental disability from schizophrenia to brain injury, etc. (but not autism). Today, the rate is 20 per 1000 and rising.
For all those who would play with criteria for schizophrenia and bipolarity from days of yore, both were assumed to have onset at puberty because cases younger than this were unheard of one hundred and fifty years ago or one hundred years ago. Rates of mental retardation certainly would not have hidden the current epidemic either, as these numbers were included in the Census Bureau numbers.
Therefore, the current 1/150 could not be hidden in 1850, 1900, 1950, etc., even if every other catagory of mental disability was displaced from the stats. Also bear in mind that there have been massive increases in many other catagories of “mental disability” for which the same “substitution” or “increased diagnoses” excuses are also being attempted– and all have to fight for that teeny-tiny .2 per 1000 rate from 1850 to prove this “improved recognition” theory.
One quick read of the diagnostic descriptions of mental patients from 1911 from various institutions in the U.S. makes it clear that doctors were not Javaman one hundred years back. They knew how to recognize various mental conditions quite well, though they weren’t any better at figuring out cause than most mainstream practitioners are today.
The most compelling arguments to explain increases in numbers of formerly rare conditions such as bipolarity (formerly manic depression), schizophrenia and previously non-existant autism are iatrogenic and environmental. There’s no other possibility: it’s either drugs, vaccines or toxins in food, air, water, etc.. Cases of possible trauma-induced schizophreniform psychosis have no reason to have increased in the U.S. (such as a grisly, protracted war on U.S. soil or a sudden, massive increase in horrendous child abuse), so this number most likely remains quite constant in industrialized societies.
Besides, it’s just ahistorical to imagine that people with classic autism or any particular mental abnormality had an easier time “passing for normal” in the, say, free-loving Victorian era or even sixty years ago. Ask someone from the UK over sixty if they remember 1 in 16 to 1 in 20 boys having classic autism– you know, the rocking, gnawing, non or only semi-verbal kind.
Also, the issue of whether the 1/150 number represents all forms of autism– PDD-NOS, HFA and aspergers– is just gamesy. The CA numbers, which are far higher than 1/150 in some areas of the state, are for Kanner’s autism, not HFA, not aspergers. And no, thimerosal was not mandated to be removed from childhood vaccines until Dec., 2006.
I think this kind of discussion is getting especially tired since the Poling concession and the discovery of several other autism-vaccine concessions by the government to families of injured kids who are now breaking the gag orders.
Everything else I have read suggests that diagnostic substitution is definitely valid.
And it becomes even more valid when you consider the study’s authors only looked at adults who’d received a diagnosis related to impaired language ability. For people like me who have Asperger Syndrome, which is also on the spectrum, there is typically NO deficiency in language.
Bottom line is that children are being diagnosed today whose same-age counterparts 30 years ago would have remained beneath the radar. We are an invisible generation whose counterparts today are reaping the benefit of increased understanding and an expanding of criteria.
Two comments:
(1) I was a kid once. I simply cannot think of ANY other kids in my school, nor any relatives or friends of the family, who had any symptoms resembling Autism. And we knew a LOT of people! There were special ed classes at my grade- middle- and high school, and those kids largely had TBI or Downs. In contrast, now I know at least 10 friends who have autistic children. Friends I had prior to my son becoming autistic.
So, yes, on the fringes, I’m sure some children with Autism used to be diagnosed as MR or something. But it doesn’t explain the very significant epidemic now.
Also, I took my son to a daycare when he was 14 months old. We were considering enrolling him there because they handled all manner of “special needs” kids – or so they said. Turned out, the other kids there were MR. They were VERY DIFFERENT from Michael. They were obviously mentally deficient in their general intelligence – but very lovable kids. But they could all sit around together, with good eye contact, and eat waffles with peanut butter. Michael, in contrast, was running around solving all the puzzles on the walls and figuring out how to climb up and grab mobiles from the ceiling. But he couldn’t sit and eat waffles if his life depended on it. I don’t believe Autism could EVER have been mistaken for MR. Autism and MR are as different as a broken leg and an appendicitis.
(2) “Substitution” does not explain epidemiological clusters that have been observed. Studies have shown statistically significant spikes in Autism rates in certain geographic areas, after controlling for such things as use of diagnostic criteria, etc.
Why would New Jersey and Atlanta, for instance, have higher rates of Autism?
Also, studies consistently show that the rates of MR have NOT GONE DOWN as Autism diagnoses have gone up. Everything else seems pretty steady, while Autism has spiked.
There is something going on — some environmental pathogen, toxin, etc. — that is causing the spike in Autism.
One idea I have is that it’s going to turn out to be immunizations after all. Not necessarily the ones received by our children — but those we received and those our parents received. Our parents’ and grandparents’ immunizations could certainly have affected their epigenomes, causing each successive generation to inherit a greater susceptibility to immune system problems. I note that allergies, like hay fever, peanut allergies, etc., all seemed to come out of nowhere in the 60s-70s. Asthma seemed to spike in the second wave, throughout the 70s and 80s. Now Autism is the third wave in the 90s-00s.
Most parents with autistic kids note that their child with autism has eczema, food sensitivities, asthma, G.I. issues, and that sort of thing.
So I think that’s going to be the ultimate connection. Maybe the whole “mitochondrial” issue is the mechanism (or one of many) which is behind the immune system failure. And very likely the use of antibiotics or too many immunizations is the trigger.
We definitely need good research. We need to keep open minds all the way around. And we need to not be in denial – yes, our kids have been damaged. But I understand the other parent’s sentiment not to “think of” their child as “damaged.”
(If I put your eyes out and you suddenly develop a keener sense of hearing, do you *thank* me for blinding you because now you have a “gift” for better hearing?”
No offense intended to any parent. Yes, I LOVE my autistic child. Yes, he probably gets more attention and “love” because of his condition. But I don’t love him more or less than his brother.
…And if I could push a “normal” button to restore his neurology to what it would have been without Autism – I WOULD PUSH THAT BUTTON IN A HEARTBEAT!
Bob
Since they removed mercury rates have been climbing even higher.
Many autistics look people in the eye. You don’t need all the symptoms to have autism.
I live in a town where my child is one of the few autistic people. They get more vaccinations here. There is little smog here and they eatfish in pregnancy.
I think the increase can pretty much be explained by a change in diagnosis criteria. I have thought that for quite some time.
My 5-year-old grandson was diagnosed as autistic when he was 2 and a half. He is not severe. He talked late and on his second birthday I remember thinking there was a problem. I told my girlfriend I couldn’t quite put a finger on what was wrong. I just felt he wasn’t quite right. Now he is in kindergarten with an aide. He was not toilet trained until just before he started kindergarten. Do I think when I was in school he would have just been a considered a little odd, with some notable social difficulties? Absolutely. But I think he will lead a more or less “normal” life. He speaks now but his speech is not at a normal level for his age. But the kid is very, very smart. My daughter mentioned to me, when he started preschool, that she thought he would be way behind. And he was behind in some things, especially socially, but he also taught the other kids some things. He would point out vents for fans and strange things small children would never notice. He has a phenomenal memory.
I think his life could be a little more difficult than some. But I could see him going to university, getting married, having a family.
This from Bob “There is something going on — some environmental pathogen, toxin, etc. — that is causing the spike in Autism.”
Wake up!
Again, if you really care and want to make a difference, Go to http://www.ourlifeline.net/andbabymakes3.htm
and watch the video. You can’t change the world, but you can change your world.
Keith
Again, I refer to the Autistic kids as the Smart Kids! Many have great talents and abilities and teach us so much!
God bless them all! God has made a great difference in my grandson. Of course getting the deadly chemicals from the deadly personal care and cleaning products.out of his home environment, and keeping them out was mandatory. He is such a blessing to us!
Keith… again
If you have a question, email me keithwren@comcast.net
If you missed it,
Go to http://www.ourlifeline.net/andbabymakes3.htm
I also wonder some of this also has to do with the system we have where services are based on diagnosis. My son has Pragmatic Language Impairment and I almost wish I could get a label of Autism because he would qualify for more help from the school district. Help it has been admitted that he could benefit from but they cannot offer under a Language Impairment label.