Over-diagnosis? Misdiagnosis? Or Just Better Diagnosis?
November 11, 2008 by Kristina Chew, PhD
Filed under Health
No question that the prevalence of autism has increased significantly in the past couple of years. Rod Welford, the education minister of Queensland (Australia) attributes the rise in his state—which is, according to the Australia Broadcasting Corporation, “much higher” than in other states—–to “over-” and “mis” diagnosis. Parents, says Winter, are seeking an autism diagnosis falsely, so their children may “receive more resources from the Education Department.”
Talking about “over-” and “mis” diagnosis of autism seems quite opposed to the argument that rise in the prevalence rate is due to a better understanding and identification of autism, and to better diagnosis—-somehow I don’t think families would go to all the trouble of having a child evaluated and diagnosed “just” to get “more resources.”
Grinker cites this as one of the contributing factors.
I have a detailed chart of the change in retardation diagnoses (substantial decrease) matched to the increase in autism diagnoses in several U.S. states.
I would like to think we are improving diagnoses.
I’m not sure if this represents a better understanding of autism, but even R. Grinker has suggested some services are provided to “autistic” children that are denied those classified as mentally retarded (OSEP). Personally, if I were a parent I’m not going to care what you have to write on a form if it gets my child better services and dedicated therapy time at school.
Doubt this is a serious problem, though.
Studies in the U.K. show a tendency to under diagnose because so many national health centers lack skilled autism experts to diagnose higher-functioning individuals.
Someday, we’ll simply know a lot more about all these conditions. Until then, diagnosing based on symptomology will always be too subjective to quantify accurately. What school psychologists see and what private neuropsychiatrists see almost never agree, I have found — neurologists (M.D., Ph.D) are much more “strict” when considering “autism” as a diagnosis.
Also… the “increase” seems less and less astonishing the more I meet people over 40 just now being diagnosed with autism spectrum disorders. We were all hiding, apparently.
I just met a gentleman who is 72 years old and received his autism diagnosis 2 months ago.
Does he have the data to support what he’s saying.
@Storkdok, if I may ask—what prompted him to seek a diagnosis?
Welford cites “research” regarding an increase in the autism rate.
This link from Asperger’s Services Australia mentions Welford, in the midst of a discussion about a 9 year old ASD boy who was “left out of a school assembly when the Channel 9 news crew visited the school.”
At what point is developmental delay no longer applicable and at what point will they need to screen out dementia, Alzheimer’s and strokes as causes of ASD?
Presumably the 72 year old has relatives who could report on his behaviour over the years. He may have a psychiatric history, perhaps wrongly diagnosed with something such as schizophrenia, childhood psychosis…
Seventy-two does seem rather late to have/need a diagnosis. But our life expectancy continues to increase, living to a 100 is becoming increasingly common. So 72 is comparatively young.
@Chuck,
meditating on your question…..
@Sheks,
I think my dad will be glad to know about your assessment about him being “comparatively young”!
As Paul Shattuck has shown, diagnostic substitution is a prime suspect for at least some of the variance in the identification of US school children as having Autism. As Autism has risen, other categories have declined. Links and sources are at “Why has autism prevalence increased?” on EBD Blog.
Diagnostic substitution goes far beyond the abilty of child psychiatry and cognitive psychology to differentiate mental retardation from ‘true’ autism. Dorothy Bishop has published a study where children who were diagnosed with specific language disorders in childhhod and who did not meet diagnostic criteria for autism prior to 1987 were now meeting diagnostic criteria for an ASD using Gold Standard diagnostic tools.
Like mental retardation, many children with communication disorders of childhood who have difficulties with social anxiety and fearfulness now meet diagnostic crrtieria for an ASD.
http://www3.interscience.wiley.com/journal/119389650/abstract?CRETRY=1&SRETRY=0
Romanian orphans who were institutionalized at birth and suffered extreme emotional deprivation also qualify for an ASD diagnosis using gold standard diagnostic tools such ADOS, ARI-R and AUTI-R:
http://www.ncbi.nlm.nih.gov/pubmed/18093025?
What does that say about the validity of the new concept of what autism is?
The Gold Standard diagnostic tools might also be described as Fool’s Gold.
“somehow I don’t think families would go to all the trouble of having a child evaluated and diagnosed “just” to get “more resources.””
Oh yes they would because it means the difference between some help and nothing at all. Charlie in earlier days would have got nothing or close to right? Mental retardation is a really bad tag because it fairly shouts ‘wasted resources’ to those responsible for service funding. This has been happening for decades and I suspect one reason is that people think all the loose ‘diagnosis’ comes from an expansion of the criteria – which it certainly has but it has simultaneously come from labelling the severely cognitively affected for whatever reason as autistic. I wonder how many realise that one reason Lovaas did not want the profoundly mentally retarded children as part of the YAP because he thought you couldn’t really tell if they were autistic or not.
Parents want some hope for their children. Autism is a better and more hopeful diagnosis than mental retardation. That btw speaks volumes for a totally ignorant view of mental retardation, which really needs a good airing too in spec ed and other circles.
“Oh yes they would because it means the difference between some help and nothing at all.”
Note the way Kristina did her quotations… your point isn’t as different from hers as you think.
Cliff
I noticed (in other new stories) that when discussing the increase in diagnosis of childhood bipolar that there was noone screaming “There’s an epidemic!”. The controversy was only over whether it was being diagnosed correctly or not. I don’t know if ASDs are being over-diagnosed, but I wonder why it even took so long to consider the question. If nothing else, maybe it will calm down the hysteria.
wow – this is a great discussion. and so civil LOL! I must say that I am baffled by the breadth of ways in which people are diagnosed with autism… seems that the diagnoses may come from doctors, therapists, psychologists, or even schools.
Adults are self-diagnosing with AS, and of course they’re doing so on the basis of what they’ve read – not on medical criteria. While one might prefer they didn’t self-diagnose, there are very few qualified diagnosticians out there to whom adults can turn.
Overall, though, I have to wonder: who can truly distinguish between a person with social anxiety, sensory issues, and, perhaps, OCD – and a person with an “autism spectrum disorder?” even language delays aren’t a required symptom for AS.
IMHO, we have begun as a society to think of high functioning autism as a personality type (shy, awkward, sensitive to sound/light, slow in developing physical/athletic skills). what’s confusing to me is – according to the criteria, this is pretty close to accurate!
Lisa (about.com guide to autism)
CS Wyatt: “I have a detailed chart of the change in retardation diagnoses (substantial decrease) matched to the increase in autism diagnoses in several U.S. states.”
I think this kind of thing needs to be better publicized. When I was growing up, everybody knew someone with what was then called “mental retardation” (and there even used to be such a thing as “mildly retarded”). Now it seems that every child who isn’t “typical” and who doesn’t have Down’s Syndrome is said to have “autism” (and even some kids with Down’s ALSO have “autism”!).
I recently met a nine-year-old kid who had just gotten a diagnosis of autism (not Asperger’s or HFA, but “autism”). At age nine? As I watched him, I saw no flapping, no repetitive movements or activities, no problem communicating with his mother. He didn’t seem “typical,” though, and didn’t even look typical. Twenty years ago I’m guessing he would have been diagnosed as “mentally retarded,” and I’m going to assume that this (or, in today’s parlance, “developmentally delayed”) was his diagnosis over the eight or so years before his mother sought out the autism diagnosis. This is where the “epidemic” can in some ways be linked to the likes of Jenny McCarthy and Generation Rescue. Who wants to think their child is “mentally retarded” when that can’t be “cured” the way autism can?
I don’t blame parents for pushing for an autism diagnosis, because I don’t think they do it because they think autism is “cool” or because they want steal services from the school districts. What they are being told is that their “developmentally delayed” child is now too old for that label, and since he still hasn’t “caught up” developmentally, he can now be said to have “autism.”
You always hear that no two kids with autism are alike. But I disagree! My son has Asperger’s Syndrome, and he is very similar to kids with “classic autism.” It’s just a matter of degree. But I meet many kids diagnosed with autism or AS who bear no resemblance to my son or any other kid I’ve met with autism. I think these are the kids who used to get the MR diagnosis that is no longer in vogue.
What he needs to cite are data demonstrating that the diagnoses are “mis”-diagnoses. Otherwise, he’s just making things up based on intuition or more base motivations.
The Courier Mail has more discussion about Welford’s statements; apparently he also said that pediatricians “found to be unnecessarily diagnosing students could be investigated.”
Apparently another member of Parliament, Dean Wells, said that “Queensland state schoolchildren were being diagnosed with autism at twice the rate of those in other states, to attract extra education resources.
Comments from a private pediatrian, Michael McDowell, are of interest:
I’ve found Welford’s comments to be especially of interest as we live in New Jersey, which (according to the 2007 figures released by the CDC) has the highest autism rate, a 1 in 94. When the figure came out, there was a lot of talk about how the NJ environment could have caused an increase and some speculation about people moving to NJ for the services, but not that autism was being overdiagnosed.
I was recently diagnosed as an adult with atypical autism.I might have been diagnosed with Asperger’s,if I had not been tested for learning disabilties,and my mother had not come along with me to back up everything I said.
I was “pushing for an autism diagnosis”,but I needed to have the severity of my disease as a child,validated.I insisted,that this,and my developmental delays factored in to the diagnosis.Also because Asperger’s is rarely,if ever occurs with medical problems as severe as mine.
You need to go back to the medical literature, published before 1980,and look at all that was written up on “childhood schizophrenia”,which is what autism was called then.This was almost as common as autism is now.It was thought you had to be retarded,or nonverbal to have autism.I had recieved such a diagnosis myself,when I was eleven.
I doubt there are ANY self-diagnosed “aspies” that can say this.
@Kristina and Sheks
Yes, it was a lifetime of many different psychiatric diagnoses including schizophrenia and psychosis. He had been institutionalized several times over his lifetime, so from the records and his family members, he had enough for a psychiatrist he was seeing more recently to make the diagnosis.
MR diagnoses are down, autism diagnoses are up. The proportion of autistics with lower IQ’s has dropped significantly, while the proportion of autistics with normal or above normal IQ has shot up. Indeed now most people with autism are high-fuctioning. This suggests that many HFA children were previously categorized as being mentally retarded. You cannot have the rise in numbers be from the reclassification of MR to LFA and have the complete reversal of the autistic population from 70% low-functioning to 70% high-functioning. So it would seem that if MR diagnoses are dropping and HFA diagnoses are rising, that many HFA kids were previously given MR diagnoses.
———————
The impact on the numbers is undoubtedly light, but there is not a bright line between schizophrenia and Aspergers. Indeed in an Aspergian’s family tree schizophrenia is more frequent than in the family of someone without. How many with Aspergers would in a previous time, be diagnosed with schizophrenia?
I’ve said it before, but based on testing alone, TH would have been classified as MR 20 years ago. And he’s considered “HFA” in some circles.
@Mayfly: “This suggests that many HFA children were previously categorized as being mentally retarded.”
Or, in schools, as having Learning Disabilities.
“I’ve said it before, but based on testing alone, TH would have been classified as MR 20 years ago. And he’s considered “HFA” in some circles.”
Which is why testing alone is not acceptable practice anymore.
A good diagnosis is based on evident from a number of sources: tests, diagnostic interviews, reports from others who know the person and so on… essentially an exercise in building up a grounded theory about the situation in which that person exists… this is the only real way to get an accurate diagnosis, and counting points will not cut it.
Two comments I have posted elsewhere recently seem appropriate to post to this blog entry:
First comment:
For about four and a half decades I have been actually assisting persons with all types of disabilities, and not just with autism. Many of the persons I am currently assisting have a diagnosis of mental illness but based on my own extensive experience I believe that some might now receive a diagnosis of autism under the much broader new definition of diagnosis since the early 1990s, which according to a 2005 scientific article co-authored by Michelle Dawson has resulted in a several-fold increase in the number of persons diagnosed with autism.
My own son Ben, age 36 completely nonverbal and considered “low functioning,” was diagnosed with autism under the much narrower old definition in January 1977 before his fifth birthday by Dr. Peter B. Rosenberger, a pediatric neurologist at Massachusetts General Hospital, to whom I was referred by Barbara Cutler, the mother of Rob Cutler of Arlington, Massachusetts. According to information I have read from websites that Michelle Dawson posted, Michelle Dawson at about age 30 in the early 1990s was first diagnosed with autism under what I understand to be the much broader new definition by an unnamed psychologist whose credentials as an autism expert are not disclosed.
Second Comment:
Concerning a recent article “Psychosis and Autism as Diametrical Disorders of the Social Brain” by Bernard Crespi and Christopher Badcock:
I would not describe their new theory as autism and schizophrenia being part of the same spectrum. Instead, their theory is that “normal” is in the middle and autism is in one direction away from normal and schizophrenia is in the opposite direction away from normal. One implication is that persons with autism are unlikely to develop schizophrenia, even though as adults the outward appearance may seem similar. One step further might be that adults who
originally were diagnosed as having schizophrenia but now claim they are on the autism spectrum might really have schizophrenia and not at all autism because they are diametrical according to this new theory. It is possible I seriously misunderstand their theory and its implications.