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Autism Surge Due To Diagnostic Changes, Analysis Finds

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A new study suggests that changes to autism diagnosis criteria may be more to blame for rising rates of the developmental disorder than anything else.

Since the 1960s, autism prevalence rates have skyrocketed from 4 in 10,000 children to a current reported rate of 1 in 88. The reason behind the rise, however, has remained unclear.

Now researchers are shedding new light on the trend by applying current diagnostic criteria to data from a 1980s study on autism prevalence in what’s believed to be a first-of-its-kind analysis.

The original study, published in 1989, looked at hundreds of Utah residents ages 3 to 25 who were suspected to have autism. Clinicians used DSM-III criteria to assess individuals as “diagnosed autistic” or “diagnosed not autistic” and ultimately found an autism prevalence rate of 4 in 10,000 in Utah at that time.

But when a research team from the University of Utah applied current diagnostic criteria from the DSM-IV-TR to records from participants in the two-decades-old study, they found that most who were deemed to be autism-free at that time would receive the label today.

What’s more, the study authors indicate that the vast majority of those who went overlooked in the original study had low IQ’s and would now be diagnosed with both autism and intellectual disability.

“Thus, while it is well known that current DSM-IV-TR criteria increased the identification of high functioning individuals, our results indicate that they also increase identification of ASD among individuals with autism and intellectual impairment,” wrote researchers in the study published online in the Journal of Autism and Developmental Disorders this month.

The analysis found that 59 percent of those who were “diagnosed not autistic” in the 1980s would qualify as having autism today, while an additional 38 percent of people in this group showed some characteristics of autism.

Meanwhile, those who were found to have autism in the 1980s study continued to qualify for the diagnosis using the current criteria, the study found.

“The results of this study demonstrate a significant effect on ASD case status attributable to changing ASD criteria, particularly with regard to individuals with intellectual impairment,” the researchers said. “An important caveat, however, is that we were unable to determine whether it was the broadening of the criteria themselves, or the interpretation of the criteria, which lead to this effect.”

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Comments (14 Responses)

  1. Joyce says:

    Why am I not surprised?

  2. vmgillen says:

    “most”? Based on personal observation, I must differ… Yes, there are many people who would have been deemed quirky, geeky, whatever- and so would have escaped notice. In many ways ASD is the diagnosis du jour – allowing services which otherwise are far more difficult to access (believe it or not! cause it certainly isn’t easy WITH the ASD Dx) Yet there are also MANY very involved children, with SIBs, aggressions, highly maladaptive behaviours -forget the labels: MANY children with highly noticeable “issues”. . . this is not just thanks to deinstitutionalization; check the demographics of, say, Willowbrook just before it was closed.

  3. Robert Howley says:

    The report is absolute nonsense. The number of severe children is growing faster than any other subgroup. An expanded definition cannot explain the autism tidal wave, I am an actuary and I know numbers. This is lazy thinking and the wrong conclusions have been reached. It is nonsense and it takes away the responsibility of the CDC or some research group to examine what toxin is causing this disease. My 21 year old daughter was not born with autism. As Mark Twain once said, there are lies., there are damn lies and there are statistics. I suggest the publishers of this study had already made their conclusions.

  4. Katie says:

    While the DSMIVTR would have likely resulted in more diagnoses than the DSMIII, because of the diagnostic expansion of the spectrum, the DSMIVTR revision in 2000, that replaced the 1994 version of the DSMIV, corrected an editorial mistake in the ’94 version that potentially allowed individuals to be diagnosed with PDD-NOS, with only one of the triad categories of impairments.

    Technically, with that editorial mistake an individual could have been diagnosed with PDD NOS, only meeting criteria associated with RRB’s.

    In other words, a person could be diagnosed with PDD-NOS without clinically significant impairments in social interaction and social communication.

    The statement: “Thus, while it is well known that current DSM-IV-TR criteria increased the identification of high functioning individuals”, is not likely correct in that the revision actually corrected the mistake in the DSMIV in 1994, that did not technically require individuals to have clinically significant impairments in social interaction and social communication for a diagnosis.

    As one can imagine there could have been a significant number of highly functioning individuals diagnosed with RRB’s alone, with no social/communication impairments, misdiagnosed per the DSMIV editorial error.

    It’s interesting how many sources have overlooked that editorial error in 1994, and the potential that it could have had in misdiagnosing a significant number of individuals during that 6 year period, with potentially mild cases of autism spectrum disorders restricted only to RRB’s.

    There is also the potential that some were never properly re-diagnosed, per the revision that corrected the editorial error from 1994, in the DSMIVTR, in the year 2000.

    It would be interesting to study the same data from the 80′s using the DSMIV criteria from 1994, to see how much of an increase in diagnoses would have potentially been made above and beyond the results of the study that used the DSMIVTR, that corrected the editorial error from 1994.

    A similar study using the DSMIV criteria, could bring additional light in explaining what was described as an alarming increase of autism spectrum disorders in the 90′s.

    Note below, in the link, that Fred Volkmar, the same individual whom headed research into DSM5 Autism Spectrum Disorder revised criteria, warning of potential diagnostic issues with the DSM5 revision of autism spectrum disorder, participated in the research that evidenced the problem, per the editorial error in the 1994 DSMIV criteria for PDD-NOS.

    http://www.psychiatry.org/practice/dsm/practice-relevant-changes-to-the-dsm-iv-tr

  5. Randy Ewart says:

    DSM 4 was published in 1994 and rates have been skyrocketing since it went into effect.

  6. Loretta Zayas-Revai says:

    The discussion is moot at this time. If the proposed changes to the DSM-V come into effect Spring ’13, 39% of those currently diagnosed with ASD and AS, will be de-classified.

  7. Theodora says:

    Why is this news? THey have been saying this over and over again for years!

  8. Sarah says:

    I find these kind of studies very troubling because they obscure the fact that autism is truely increasing. Furthermore, I think this is a deliberate attempt to cover up the magnitude of the autism crisis in the US. The truth is there genuinely are more kids with serious neurological disorder called autism than ever before. Regardless of the diagnostic label there are more kids with neurological disorders in the US than cancer, pediatric aids and diabetes combined. The increase cannot be explained away by a change in diagnostic criteria. The increase is real and alarming. After the CDC anounced the new rate of 1 in 88 American children having autism, Dr. Geri Dawson of Autism Speaks referred to the increase in autism as a “crisis” and “an epidemic of autism”. Those were her exact words.

    Autism Speaks said this about the sharp increase in autism:

    “Based on the abovementioned research, approximately 53% percent of the increase in autism prevalence over time may be explained by changes in diagnosis (26%), greater awareness (16%), and an increase in parental age (11%). While this research is beginning to help us understand the increase in autism prevalence, half of the increase is still unexplained and not due to better diagnosis, greater awareness, and social factors alone. Environmental factors, and their interactions with genetic susceptibilities, are likely contributors to increase in prevalence and are the subject of numerous research projects currently supported by Autism Speaks.”

    Source: “What is Causing the Increase in Autism Prevalance?” – Autism Speaks

  9. Sarah says:

    well said Robert Howley. No one is buying the “change in diagnostic criteria” as the reason for the enormous increase in autism anymore. Look around, with 1 in 54 boys now diagnosed, just about every family is effected by autism or knows someone who is. People in the medical establishment are trying to cover their tracks because the public is waking up to the crisis. The timing of DSM V which will change the autism definition resulting in many children losing their diagnosis couldn’t be more suspect. Shame on you white coat professionals who play with children’s lives. Shame on you for keeping up this charade and surpressing the truth. People see our kids in their communities. Everyon knows autism is much more prevalent. You cannot hide the fact that our kids exist by publishing bogus studies. Your credibility is eroding and you only lose more credibility with the public. Your building a scaffold and noose with your own lies and one day that noose will snap.

  10. 2asdmom says:

    Re:Changes in diagnostic criteria-No matter how you slice it and dice it, we have one generation, plus another nipping at it’s heels, who have significant impairments in socialization, behavior and communication.Whether one chooses to call that autism, social communication disorder, developmental delay, etc,really takes away from the burning question, “Why is this happening, and what are going to do about it”? We have committed almost a billion dollars in research over the last six years, and no effective cause, treatment, or cure, has come out it. Something has to give, and soon!

  11. KA101 says:

    I don’t think the DSM5 changes are particularly worthwhile, but would be interested in the results of the study Katie suggests. Changing definitions can certainly affect disorder rates, along with whether a given set of traits is a disorder at all.

    As I’ve mentioned elsewhere, aut$peaks does not speak for me.

  12. Jenna says:

    Sorry-this is just garbage. No one raised in the 60s or 70s will believe it for a second–our neighborhood was teaming with kids in big Catholic families and my mom was the town busybody–knew absolutely everyone. We never saw this anywhere. My dad worked in psych hospitals and he didn’t see it there either. I never saw a single autistic kid growing up in any of my schools. People don’t want autism to be new because if it is, somewhere someone is liable for a whole lotta loot.

  13. Alisa Cooney says:

    I think the so called issues with the rise in prevalence of Autism should not be the focus at all, instead (considering that the newest concept of why Autism happens eg the genetic combination of both biological parents) the focus should be more on helping ALL noticeably effected children of ASD traits (whether or not a diagnosis of ASD can be given). If we help children with even mild traits of ASD grow out of them then the actual ASD people will become more obvious (I believe you dont grow of actual ASD, they may learn to over come adapt but not grow out of ALL ASD traits). Not only will helping mildly effected children grow out of ASD trait help define who has the true LIFE long ASD condition, it will also help to future children of families be more well rounded.

    Trauma can mimic ASD if we find a better way (that verbal account of family history) to separate ASD from children dealing trauma (even negative parenting styles eg not allowing the child the freedom to learn -due to fear or other reason) related ASD traits I believe this also would effect rate of ASD diagnosed.

    You cant just simply blame the criteria when there are so many variables that could ALL partly contributing.

  14. Alisa Cooney says:

    { Quote>>Loretta Zayas-Revai says:
    July 1, 2012 at 3:38 pm

    “The discussion is moot at this time. If the proposed changes to the DSM-V come into effect Spring ’13, 39% of those currently diagnosed with ASD and AS, will be de-classified.”}

    No one will get de-classified as you put and they are bringing in milder disorders for anyone who dose not have all the ASD traits eg G 01 Disinhibited Social Engagement Disorder, F 08 Obsessive-Compulsive or Related Disorder Not Elsewhere Classified, A 04 Social Communication Disorder [to name a few that might fit some of the ASD labeled kids I met that seem milder in most other ASD traits]. No parent should ever give up seeking an answer to why their child is struggling, and it frustrating when things change even more so since ASD is characterized by disliking change (is understandable that even the parents will resist). I just wish people would not go to so many extremes during this whole process of change is hard enough to deal with with out extreme view’s.

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