Popularity on WP: A question

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Okay, so considering the full weight of all the evidence, I think we can all agree that it's under-diagnosed. However, at the same time, it's being massively misdiagnosed. The two are logically compatible and all the extremely obvious evidence as highlighted by me ultimately attests to this fact.

I don't think any of those are medical terminologies

Where did you present obvious evidence to attest to this fact?

All I was able to find was a phone survey funded/managed by Autism Speaks that said 40% of children diagnosed with autism were misdiagnosed. I can't seem to find the actual survey or actual news articles related to it, just discussion of the article.

In another finding, nearly 40 percent of the children ever diagnosed with autism disorders didn't currently have autism, the parents reported. That rate is much higher than ever found by autism recovery researchers. Outside experts said they doubt it reflects a true rate of recoveries. Autism could have been suspected and later ruled out for some of the children, the authors wrote.

The survey questions were flawed, said autism researcher Irva Hertz-Picciotto of the University of California, Davis. A broad definition, read to some parents who asked for clarification, didn't include "repetitive behaviors," Hertz-Picciotto said. And parents weren't asked about a professional diagnosis in the second question.

Children with autism can have trouble communicating and interacting socially. They may have poor eye contact and engage in repetitive behavior such as rocking or hand-flapping.

"The wording and definition invited much broader interpretation," Hertz-Picciotto said, and researchers didn't check what parents said against medical records.

In 2007, 1.1% of US children aged 3 to 17 years (1 of 91 children in this age group) were reported to have currently diagnosed ASD. In addition, for nearly 40% of all the children reported to have ever had an ASD diagnosis, a parent or caregiver reported a past but not current ASD diagnosis.

To help us interpret our findings, we examined several potential reasons why parents might not have reported a current ASD diagnosis for this sub-group. Although previous research suggested that, overall, an ASD diagnosis at young ages (2–5 years, depending on the study) is still valid at later ages, greater difficulties with and a lack of precision in diagnosing ASD at very young ages could result in a minority of children who no longer meet ASD criteria as they age. 24–27 If a diagnostic change occurred as children aged, we might expect the percentage of children previously diagnosed but not currently with ASD among those ever diagnosed to be greater in the older age groups. However, the proportion of those who were previously diagnosed but not currently with ASD was 48%, 40%, and 38% for children aged 3 to 5, 9 to 11, and 15 to 17 years, respectively. Because the data are cross-sectional, these age effects may be confounded by birth-cohort differences that we could not assess. Also, we could not assess whether the relatively high proportion of children who had a previous ASD diagnosis was primarily attributable to children initially diagnosed on the basis of milder symptoms or with PDD-NOS, as has been suggested in clinical studies. 24–27

Another possible explanation is that ASD may have been initially suspected on the basis of a developmental screening but subsequently ruled out and never truly diagnosed. The high rate of “lost” diagnoses among very young children supports this notion. We might expect that children with a past but not current ASD diagnosis would nonetheless have a high rate of other developmental and mental health conditions. Indeed, they did, although the rate was not significantly different overall from those with a current ASD diagnosis.

A third possibility is that some children with developmental delay, mental retardation, and learning disabilities may have been initially classified as having ASD to facilitate receipt of needed services, particularly from publicly funded programs such as Early Intervention and special education programs. 28 This diagnostic-substitution hypothesis cannot be tested directly by our data.

Finally, and conversely, because parent-reported current ASD was not externally validated, we cannot rule out that some parents with children currently meeting criteria for ASD nonetheless responded “no” because their child no longer receives special education or other autism-specific services for the condition. Approximately one third of the children who once had an ASD diagnosis were not receiving special education services, which is substantially lower than the proportion of children with current ASD who were not receiving such services. Children who once had an ASD diagnosis were less likely than children with current ASD to have a usual place for care, and subgroups previously associated with less access to care (non-Hispanic black children and children from families with low parental education 29) were also particularly likely to fall in the ever-but-not-current-ASD group.

Because we lacked data to ascertain definitively which children in the ever-diagnosed-but-not-current group truly had a valid past ASD diagnosis, we present a prevalence estimate that required affirmative answers to both the ever and current questions. Still, our current estimate of 110 in 10 000 is higher than previous US estimates. 16,18,19 Methodologic changes between the surveys (with the inclusion of Asperger disorder, PDD, and other ASD) and overall increases in public awareness and provider identification of ASD might partly explain the increased prevalence. Several previous studies have shown that the average age of diagnosis is decreasing, which leads to an increase in total prevalence at any 1 point in time. 20,30,31 Although there were a number of important changes in the 1990s that influenced the increase in diagnoses, including broadening the diagnostic criteria for ASD, the last 10 years have seen dramatic increases in available diagnostic services; much greater awareness of the condition among parents, doctors, and educators; and a growing acceptance that autism can co-occur with other conditions. All of these factors have played a role in the continued rise in ASD-prevalence rates. 32–38 Also, even within the current cohort, children born in or after 1993 ( less than/equal to 14 years of age) have higher ASD estimates than those born in the earliest years.

...A third possibility is that some children with developmental delay, mental retardation, and learning disabilities may have been initially classified as having ASD to facilitate receipt of needed services, particularly from publicly funded programs such as Early Intervention and special education programs. 28 This diagnostic-substitution hypothesis cannot be tested directly by our data...

Which is to say things are a lot fuzzier than the news said, which was "40% misdiagnosis rate."

I just found out today that insurance, of any type, only covers autistic intervention services for a total of 2 years. So, every two years, children need to cycle through different agencies and receive all new dx's if their parents cannot afford payment out of pocket. I see alot of opportuntiy for missed and botched dx's and plain old discouragement in that since these are generally poorly funded local agencies with huge case files, a lack of qualified help and, often outdated therapies and treatment standards.

It scares me to think how many kids fall through these cracks. The local support boards I'm on are full of parents desperately trying to get services for their LF children. Some of the horror stories are unbelievable.

Have you been spying on me?

My spies are everywhere.