Report; Autism rate not 1 in 88 but 1 in 50 in US

[King_Oni]

Autism Rate Soars To 1 In 50 Kids

In less than a year?s time, the federal government is again revising the prevalence of autism upward, saying the developmental disorder now affects 1 in 50 children.
The latest estimate released Wednesday by the U.S. Centers for Disease Control and Prevention comes from a national telephone survey of nearly 100,000 parents conducted in 2011 and 2012.
Parents were asked a number of health questions about their kids including whether they had ever been told by a doctor that their child had an autism spectrum disorder. The results suggest that autism is occurring in 2 percent of school-age children.

That?s substantially higher than prevalence numbers the CDC released just last March which put the rate of autism at 1 in 88 American children. That previous estimate relied on a study of health and education records collected on 8-year-olds. The current research included kids ages 6 to 17, but is considered by some to be less reliable since it is based on parent-reported information.
Federal officials say the increase is largely due to better diagnosis of autism spectrum disorders. The jump in prevalence was most pronounced among older kids with milder forms of the condition.
Consistent with previous findings, the survey found that boys were four times more likely than girls to have autism.

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[Geordie]

My own 'editorial':



Look at this chart:

What is wrong with us if most of us are naturally introverted, passionate in the few things that we like, and we don't talk to others much?

Autism

In the past few years, mental retardation diagnoses show a decrease, and doctors do observe children whom were diagnosed with mental retardation are given autism diagnoses instead. Then why autism diagnoses still rise?

I think new growths in autism diagnoses are in the 'high functioning' part of the Autism diagnosis, be it High Functioning Autism (which I have) and Asperger's Syndrome. At least, among the couple of dozens of INTJs I know, all display some characteristics of Asperger's Syndrome.

Since possibly as many as 4% of our males, and 2%++ of our population as a whole have some form autism - a 'catch-all' diagnosis would be what we see for the autism diagnosis. So we lump intellectually disabled people with low IQs with those creative, passionate but just naturally shy people who find it hard to break out of their 'shell'?

In this way, we will see a reduced potential in our world, because we are still living in antiquated times, where we exclude certain people and their ways of thinking and behavior and forcing them to 'fit in'.

Yes, occupational therapy may help children - but what if they grow up? Should we just recast our societal model to tap their potentials, or should we miss those children with current autism diagnoses totally?

Also, there is also concern autism services would be spread so evenly and thinly, that those genuinely needing autism services may find it hard to get the level of services they want, even with DSM-5.

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Perhaps we should really re-examine our autism diagnoses, before the doctors inevitably re-look at us, since we're living in such dynamic times for mental health diagnoses.

Should we focus at our 'conditions'? Why not look at our strengths and limitations instead? Why not use our strengths, that is, our insight and creativity, to try to get around our... natural tendency to be alone? Maybe we should just be more accepting of our own inability to get things done because we need more time and more focus to get our dreams done?

 

[Geordie]

Rise in autism rate is up for debate : page all - NorthJersey.com

BY MARY JO LAYTON
STAFF WRITER

When New Jersey reported one of the nation?s highest rates of autism last year ? doubling in six years to one in 49 children ? researchers described it as ?beyond an emergency.?

But a federal study released this week indicated that the high rate appears to be the norm nationally. Autism spectrum disorder now affects one in every 50 children, well above the one in 88 previously reported by the Centers for Disease Control and Prevention.

?The good news is that the increase in autism isn?t special to New Jersey,? said Walter Zahorodny, an autism researcher at the University of Medicine and Dentistry of New Jersey. ?The bad news is that it?s a significant increase and it?s registering everywhere.?

The findings released this week by the U.S. Health Resources and Services Administration and the CDC are spurring debate: While experts attribute the increase to better reporting, it also suggests that the disorder is being diagnosed more frequently in children with milder symptoms.

According to the study, 1 million children nationally are diagnosed with autism, a complex disorder that affects brain development and a person?s ability to communicate, learn and form relationships.

?The feeling all along wasn?t that New Jersey has more cases of autism ? New Jersey was just more rigorous in ascertaining the incidence,? said Dr. Joseph Holahan, medical director of the child development center at St. Joseph?s Children?s Hospital in Paterson. ?It?s still one of the most common serious developmental disorders we see.?

The varying counts can be attributed to many factors ? whether information is obtained from a telephone survey or a more rigorous accounting that relies on education and medical records. Some surveys counted children as old as teenagers with milder symptoms that may have been missed in their younger years. Other federal research only counts the number of 8-year-olds diagnosed ? the age by which most children are seeking specialized care.

However the rates are determined, advocates say there are still too many children left undiagnosed and too few federal dollars channeled into research and specialized treatment and education.

?We still think one in 50 is an underestimate,? said Michael Rosanoff, associate director for public health research and scientific review for the advocacy group Autism Speaks.

?The real issue is we need to meet the demands of this public health crisis,? said Rosanoff said. ?This should be a wake-up call.?

Survey questioned

Even worldwide, higher rates of the disorder are evident, Rosanoff noted. A study in South Korea, led by Yale experts and published in the American Journal of Psychiatry in 2011, estimated that one in 38 South Korean children have some form of autism. That study included research by clinicians evaluating children previously undiagnosed. Experts say the research team may study 8,000 children in South Carolina to better determine rates of the disorder in the U.S.

Some experts have questioned the methodology used in the latest federal report ? a national phone survey of 95,000 parents from 2011 and 2012, compared with more rigorous population-based research the CDC relied on when it estimated the 1-in-88 rate. Fewer than a quarter of the parents contacted agreed to answer questions in the general health survey, which included the questions about autism.

The survey focused on children ages 6 to 17, and the CDC attributed much of the increase to reported cases in adolescents ages 14-17. These children were more likely to have milder symptoms and therefore were not diagnosed until later, CDC experts concluded.

?This is a good study, done with a large U.S. sample, and it correctly reflects the magnitude of increase in autism spectrum disorder over the past years,? Zahorodny said.

But he urged caution. As a telephone survey, he said, ?it may be biased from the perspective of who responds.?

More complete counts are expected in coming months when the CDC releases its population-based studies of 8-year-olds from 14 areas in the country. Over the last decade, that CDC data have shown a sharp rise in prevalence, from one in 150 children in 2000 to one in 88 in 2008, the last year information was complete.

Zahorodny was the principal researcher in New Jersey for the federal study released last year that identified the 1-in-49 rate. The study was based on a survey of educational and medical records for more than 7,000 children who turned 8 in Union County in 2008. New Jersey has an average of eight to 10 records for each child, compared with three or four in other states.

Eighty percent of the children with autism in the New Jersey study were identified as having the most severe form of the disorder. Boys were more than five times as likely to be diagnosed as girls, both in New Jersey and in the rest of the country.

The symptoms of autism, which is believed to have genetic and environmental causes, vary in combination and intensity. While some people have normal or higher-than-average intelligence, they may be socially inept. Others are unable to speak or care for themselves.

If anything has changed in North Jersey pediatric neurology practices, it?s the number of parents seeking a diagnosis for more moderate symptoms that are frequently discussed in the media.

?I?ve been in practice for 15 years, and right from the beginning I had a large number of cases,?? said Dr. Peter L. Heilbroner, a pediatric neurologist in Ridgewood.

?We?re seeing more parents coming in asking about mild symptoms, which aren?t always autism,? he said. Is a speech delay truly autism? Is a teen?s behavioral problem or lack of social connections a sign of Asperger?s syndrome? Is a child suffering from depression or anxiety, which can mimic autism?

?Labeling a child with any of these disorders should be done very carefully,? he said. ?It?s not a diagnosis that should be thrown around lightly.?

Email: [email protected]

 

[King_Oni]

I still find it interesting how everyone (the therapists and psychologists) see this trend, keep on diagnosing and no one ever said "yikes, 1 in 88 is a structural problem, maybe we should look into possible causes for this widespread problem".

With this extreme rise I wouldn't think it's that far-fetched to make it mandatory to retest everyone when DSM 5 comes out just for the sake of getting correct statistics. Would people agree? Probably not... and even less when it's perhaps their own hard earned cash the government wants you to invest in it (since... y'know.. cutbacks and all).

With these growing numbers I do keep wondering what constitutes autism now. If... and this is the big if... all these kids are seemingly autistic enough to carry a label and have enough difficulties to get by in life, doesn't this also mean that for a significant part of the population society clearly does not function in a way that makes them an asset? But like the article(s) say; people think that a lack of social skills is enough already to warrant asperger's or autism, which IMO is not the best way to stick a label on someone.

I'm partially convinced that autism is something environmental and cultural. While the need for teamwork and social behaviour increases it exposes the lack of these abilities in some. If people aren't assessed and confronted with these crucial functions in everyday life on a regular basis, no wonder all of a sudden you'll run into problems.

I for one am interested to see how many of us on the spectrum (including those kids and not just us on the forum) hold up when DSM 5 rears it's head. Yes, it's controversial cause the Aspie label isn't around, but there's an important addition to the diagnostics tool. It has to impair everyday functioning. It's interesting to see how that holds up to cultural standards though.

I'd be really amused if the rate of people with autism doesn't decline and actually gets bigger this way. But that might be just me wanting to see how shortcomings are exposed no matter the tool (and itterations thereof).

 

[epath13]

eh, well 1 in 50, 1 in 25. Soon enough everybody is going to have some sort of Autism When I look around and see regular, government, medical folks get obsessed with drama and numbers instead of focusing on real, solid, hands-on solutions - this is the real problem.

 

[Jacki Cucinotta]

Excellent point Epath! From what I've read and heard over the years, I have come to a very similar conclusion. It seems like many groups in our society are obsessed with numbers and a need for categorization. The problem with relying on those is that not every individual with autism meets every single criteria for categorization - there is too much generalization involved. Not everyone has the same exact symptoms.

 

[King_Oni]

Excellent point Epath! From what I've read and heard over the years, I have come to a very similar conclusion. It seems like many groups in our society are obsessed with numbers and a need for categorization. The problem with relying on those is that not every individual with autism meets every single criteria for categorization - there is too much generalization involved. Not everyone has the same exact symptoms.

From my own experience, it's something I'm seeing already. They think everyone on the spectrum can be supported and "fixed" the same way and if that doesn't work, you're apparently not autistic enough and they might wonder if you should even have that label.

Those same people that are interested in statistics are the same people with that managment mindset and knock down the notion that everyone would need a specific route for guidance and coaching because it's too expensive. Sitting around and talking about statistics clearly isn't :rolleyes2:

 

[Geordie]

A response to this article:

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Autism prevalence data are always news makers. Although, maybe it’s just me, but the announcement of a new autism prevalence estimate for the U.S. didn’t seem to be as big a news story as previous reports. That said, so much of the discussion around prevalence estimates centers on “what does this tell us about the past” or “what about the future”.

“What does this tell us about the past” is the discussion around “was there/is there an epidemic (usually with an explicit or implicit reference to vaccines)”. “What about the future” is usually a discussion focused on the economic burden and what happens in we project the trends out to the future.

But what about right now? We have roughly 2% of our school age children in the U.S. who are autistic. Disabled to various degrees. Probably a like number of adults as well. For those who don’t accept this notion, keep in mind that one of the major themes of the recent report was how a large fraction of autistics were identified late. They had fallen through the cracks and were possibly not receiving the supports they needed. We are talking teenagers, not just young children. It isn’t that great a leap to say that we there is a large population of unidentified autistic adults.

Most news stories and most discussion will focus on one number: 2%. I would argue, and will argue, that a factor of at least equal importance is not how many autistics there are, but how diverse this population is and how little is really known.

There is no biological test for autism. As this study and many others have shown, the understanding of what autism is, even behaviorally, is still evolving. And this is important whether you take a medical model of autism or a disability model or some combination of the two.

We (a society of autistic and non-autistic people) need to give autistics the tools and supports needed to succeed in this world, with various definitions of success. And we can’t do that if we don’t understand what is needed. 2% is a number that can grab people’s attention. And that includes politicians. But to me, the bigger issue is the breadth of the spectrum. The diversity of the autistic population. Consider the report again. There are so many ways to look at the data, but let me pick some facts to highlight. The prevalence estimate for 10-13 year olds was about 2.4%. Of this, roughly half fall into the so-called “mild” autism category. Only 5% of parents placed their child into the “severe” category. Of course, there is no real definition of mild, moderate, or severe to use for this, and parents might be biased to report milder needs, but let’s go with the structure we are given. But, in the end, 1%, 5%, 95%, is less important than the fact that there are subpopulations of autistics which needs a very different support structure than others.

Many people discussing the new prevalence values focus on the need to have the money to provide supports (be it in the home, the school or the workplace, medical or non-medical) for a wide variety of autistics. But in order to do that, we have to know what supports and tools are needed. I know this is getting repetitive, but no amount of money can give autistics, parents, teachers, caregivers and employers the tools needed if we don’t know what the appropriate tools are.

There is a broad spectrum of autism, and a broad spectrum of ages. Perhaps the most overlooked area of autism, be it research or supports and services, are the needs of adults. Many parents tend to categorize autism by IQ, with a linear spectrum with those with lower IQ’s on one side and those with higher IQ’s on the other. Even with this simple model, we have a huge matrix of needs for autistics: with age on one axis, and IQ on another. But the IQ-category idea is too simplistic. Which means, the real matrix of needs we have to understand is multidimensional.

Ask someone outside the community who has a basic understanding of the autism discussion, “what should we do for autistics?” and you are likely to get, “behavioral intervention”. OK, for some fraction of a young population, that may be a good answer. Maybe, one might argue, truly individualized education plans (IEP) will allow parents and teachers to customize supports for the needs of the autistic during school. That’s how it is supposed to work, but this process would be much more efficient if we had better recommendations for autistic students of all ages.

It is worth taking a moment here to point out that here is a point where more money directly into services is needed. Mention special education to a school administer and you are likely to hear “unfunded mandate”, “budget”, and “encroachment”. We in the U.S. have never lived up to our responsibility to support special education as promised from a federal level (federal special education support is less than 1/2 what was promised). And it isn’t like state and local governments are supporting special education to the levels needed.

But that’s just school. What about transition to adulthood? Thank god for people like Paul Shattuck who has been asking these questions, but this study only came out last year. And adulthood and autism has recently been referred to as “the great unknown” in one paper.

And medical issues? These get a lot of discussion, especially in online parent forums. Ask what medical conditions are more common in autistics and you will likely hear, “GI complaints”, “immune dysfunction”, “metabolic dysfunction”. Anyone want to venture a guess as to what are, by far, the most common comorbid conditions to autism in children? Neurological disorders and mental health conditions. Autistics are 25 times more likely to have one or both of these. And what happens in older populations? Another “great unknown”.

So, yes, 2% is big. And it’s important. And it will get people’s attention. But if we don’t know what tools or how to support any given segment of the population, it’s just saying how many people we can’t support.

Of course we need to take autism seriously. It doesn’t matter if 2%, 0.2% or 0.02% of the population are autistic, it is still important. But we need to recognize that there are whole areas of questions we haven’t even asked yet, much less found good answers for. It is hard to package this message into a sound bite, but the focus needs to be on the breadth of the questions, not just the size of the population.

Autism Rate 2%, what now? | Left Brain Right Brain

 

[Loomis]

It is interesting that the rate of ASD and INTJs are both 2 percent of the population.

 

[code-e]

when I see the article that says that Autism is something thats bad it makes me feel like crap

 

[Ste11aeres]

A response to this article:


Autism Rate 2%, what now? | Left Brain Right Brain

I liked the little video in this link

 

[Perry Holia Kerrith]

When I see numbers like this, especially when I remember seeing ads that said "1 in 300" not too many years ago, I really feel like it validates my theory of autism being part of the evolutionary progression of mankind. Of course, it could also be that people just didn't know how to diagnose autism back then, but... You've got to admit, it's at least interesting to consider. So many activities to which we used to allocate our full attention are now being discretely handled by machines, and access to information has become almost instantaneous. I feel it may be a new compromise between in the brain vs brawn struggle, perhaps because success in life is now attributed much more to one's intelligence, rather than physical fitness.

I don't know. I don't want to get too into it; because it's slightly off-topic and also because I've been awake for a little too long and may not be thinking straight. But still, interesting.