U.S. autism rate surges, CDC reports (1 in 68) | Hacker News Reader

U.S. autism rate surges, CDC reports (1 in 68)

washingtonpost.com

34 pointsndonnellan60 comments

> “It could be that doctors are getting better at identifying these children, there could be a growing number of children with high intelligence [who are autistic], or it could be both,” she said.

The article doesn't mention that the DSM-5 went into force last year. The criteria for diagnosing Autism has changed since the DSM-IV, and this could also explain the jump in diagnoses.

(This is alluded to with the line "Milder forms, such as Asperger’s syndrome, are now considered to fall along the autism spectrum." -- The entry for "Asperger disorder" in the DSM-5 is now replaced with a pointer to see the entry for "Autism".)

You comment hit on something that has been bothering me lately.

If in order to be informed I have to trawl through multiple news aggregators to find comments with primary sources and information closer to the source, weigh the potential bias of those commentors, analyze their citations, then what roles does journalism even serve? To me they seem to be nothing more than conversation starters, leaving individuals to spend hours a day doing the the legwork.

Being the gatekeeper of national dialogue is an incredibility powerful platform, and I guess to me part of the tradeoff for them wielding that power is that they (at bare minimum) do the legwork of giving accurate information and a complete picture.

I'm not saying I want journalists to do my thinking and analysis for me, but if they can't even accurately report basic information, what justifies their place in our society giving them that power?

With all the anti-science conspiracies floating around about the "rise" in Autism, not giving the context of the updated DSM leading to a broader scope of the disorder, this goes from being harmless negligence to actual harm.

I think it is worth pointing out that for the vast majority of people, there still a level of 'belief' required for the modern science, not unlike the religions of old. There are very few laypeople equipped to think critically about, let alone verify, most scientific theories. As a result, they have to take it on faith that the "priests" (in today's world, scientists) are correct.

And even scientists can really only be be deeply familiar with the experimental basis for a few narrow fields of study. For all the rest, they too have to take it on faith.

I think the problem is that it is up to the consumer to be discerning and reward sources who strive towards accuracy, while punishing bad sources with less attention.

Since the other consumers of whatever news source you are using aren't sufficiently sensitive or discriminating, your news source will thus suffer.

Just came here to post the same quote. This particular article doesn't give any information that would clearly suggest an actual increase in incidence (rather than an increase in diagnosis).

Autism isn't my field. But the Autism epidemiologists I've spoken to all think that in addition to those two trends ((1) better coverage, and (2) Shifting diagnostic baseline) there is still a underlying increase in symptom frequency and severity.

It has gone from 1:150 to 1:68 over about 10 years, and another study from last year (1) had the rate at 1:50. Saying that an increase this dramatic is based on changing diagnostic criteria and awareness seems disingenuous, and intended not to alarm the public.

1 http://www.nvic.org/NVIC-Vaccine-News/April-2013/CDC-Reports...

The sort of academics I'm talking about don't think about whether or not they'll alarm the public. They don't think of the public as their audience. Thier audience is other academics, and all that they care about is making conservative conclusions based on data.

And the people who deliver data (the CDC in this case) clearly are highly concerned about alarming the public. The single word "However" in the bullet point here (http://www.cdc.gov/media/DPK/2014/dpk-autism.html) is a fairly obvious indicator of the CDC's agenda not to cause concern even with these high numbers, as it infers that the problem isn't as bad as it used to be (because IQs are higher). That the CDC chose to frame the data in this way is troubling.

This is something I'd really want to see numbers on though, and not just a feeling, because those two issues are two of the biggest ways that humans - being poor statisticians - draw incorrect conclusions.

Actually this is exactly the kind of thing that I humbly defer to experts on. A dataset and a few hours in R couldn't get you to the truth of this question. It would take me a couple of years to figure out for myself if there is an underlying increase in the rate. I'd have to talk to a lot of doctors, personally deliver the diagnostic exams, get a feel for why this or that measure might disagree, etc. If you go looking I'm sure that you could find datasets and papers that purport to prove any possible conclusion. There are people who have earnestly done those years of inquiry, and I'm inclined to trust them.

the numbers used in the report are from 2010

Ah, indeed they are, so this "jump" predates the introduction of the DSM-V. My mistake.

(wozniacki links to the original report in https://news.ycombinator.com/item?id=7496264)

The numbers are from children born in a specific year, as the CDC has done with the last few studies, and have increased in each of the studies by a significant margin.

Having seen a lot of very successful, but somewhat autistic people working in tech (probably Asperger's), it seems a little strange to be classifying it as a "disorder"...

Having seen a lot of children, including my own, (10 years old and unable to speak), I think you should do a little more research on the entire spectrum the disorder covers.

This is one of the major problems with the autism community and the diagnosis. Someone who doesn't make eye contact and perhaps fixates on certain topics (maybe comp Sci) has the same diagnosis as my child who will require lifelong care and never live independently.

We need the public to understand both sides. To some autism is considered a 'gift', and this study suggested 46% of their numbers were at or above average IQ. What they didn't highlight is that 31% have low IQ and are the ones (as I mentioned earlier) that will require lifelong care and put an unimaginable burden on families.

Edit spelling

As another parent of a child with autism who is barely verbal, I have to agree, this is not the same as Aspergers. In fact, I think you'll agree, we hope our kids will one day only be diagnosed with Aspergers!

The problem with classifying autistic as "intelligent" and "obsessive" and "introverted" hides the truth that there are the other half of autistic people on the low-functioning end of the spectrum cannot live independently. And no, they're not exceptional at counting cards at Blackjack table either.

Young autistic children require many hours of direct speech and behavior therapy everyday just to get them to basic level of communicating what they want. This is the only known effective treatment for autistic children, but it has to happen every day for years, and it is extremely expensive. Trivializing autism causes insurance companies to put caps and limits on covering direct therapy because they don't see it as essential, but parents of autistic kids know that direct intense therapy is essential and makes a big difference.

This thread seems convinced that autism = intelligent and quirky. Maybe it is Rain Man, or the character on the show Parenthood or that other lawyer character (forget which show), or the prevalence of Asperger's in tech. People really don't seem to see it until it happens to them or their family.

As I've said elsewhere in this thread, when the CDC chooses to highlight (1) that 46% of these kids are average to above IQ, it says "don't worry". Why didn't the CDC choose to highlight "31% of these kids are severely impacted, unemployable, and will require lifelong care at an incredible expense to their families (financial and emotional) and taxpayers"? 46% is not even a majority, yet the CDC chose that group to mention as a highlight.

Why would the CDC make that choice?

I agree, I have seen large differences in the disorder between people. For example, both may affect social behavior, but there is likely something else that triggers high vs low independence/IQ.

My girlfriends brother has autism and he is smart, but will watch "finding nemo" for two months on repeat (he's 8 btw). A classmate of mine (who is extremely intelligent) also has autism, but functions normally, besides running everywhere and not making eye contact. Clearly, there is a large difference between the two and they have drastically different traits and I would argue different disorders.

If this is the case, the autism spectrum should be split into different disorders. This would provide more information to parents, and teachers about what particular traits the child has.

Leaders in the autism community are lobbying for a change in the terminology or diagnosis. You have charities trying to provide support for the most negatively impacted, and then you have the highest functioning members of the community saying "stop trying to change us". It's like using the term paraplegic to apply to true paraplegics and people with a sprained ankle. Both may struggle to walk, but the underlying issue is entirely different.

Using the example above, my kid is closer to paraplegic. But being in the community, I know kids with the sprained ankle too. Based on the comments in this thread, it seems many here think that most in the community have a sprained ankle. From this one study 54% are below or average IQ, with 31% definitely below. These 31% are the ones that will require lifelong care.

We need to change terminology to differentiate, so the debates about whether an increase is actually an increase don't happen. The CDC provides stats on several diseases in real time - autism numbers came out this week for kids born in 2002 and diagnosed before 2010. Doesn't anyone question why this is?

It's asperger's. You'll know if you meet someone with full-blown autism. They would never get into employment.

The S in ASD stands for spectrum, as there is a diverse range of symptoms that may lead to an autism diagnosis. Many of these are not at odds with analytical or creative capacity. There's a gap between where aspergers tends to stopped being diagnosed and being unemployable, and it's not unidimensional.

I understand the spectrum to be honest, but I think in trying to get the rest of the world to understand ASD, you can't start off too deep. In the article it seems autism is now interchangeable with ASD, so we're losing even a binary terminology.

That is incorrect. While many who are significantly impaired will be unemployable beyond the most menial jobs, many with autism can be employed even in high level positions that may not require skills the person may lack due to autism. QA testing may be a good example.

Autism is a spectrum. It's not just Asperger's and wholly unemployable. There is lots of room in the middle.

Yes, but there's a significant percentage of people on the autism literally can not follow instructions, or cannot the focus to listen when spoken to, or cannot comprehend language. They require life long care, employable for small tasks perhaps, but not independent.

Many Asperger's people themselves have rejected the "disorder" label and ask to be thought of as different in a neutral, not necessarily bad way. For this reason they refer to non-Aspergers people as "neurotypical".

This is reasonable in regard to high-functioning Aspies, but remember that ASD covers a wide range. I think it would be better to retain the separate label for Asperger's, because it is distinguished by normal or better intelligence and language ability (while sharing other traits with classic autism) -- however, even within the Asperger's category there is a wide range.

Another aspect that is often underappreciated is that the HF aspie, if smart enough, can learn to adjust to normal society to such a degree that he/she can often pass for normal, so that a diagnostician would place him/her at a different point on the spectrum at different stages of life.

The neurodiverse crowd is an interesting case. Autism organizations find themselves getting criticized by them, with the stance that they "don't need fixing" - and they are correct. For those that autism is a gift, keep that gift. The people the groups are trying to help don't focus on the neurodiverse, but rather are focused on those.

If you have the ability to say "I don't need fixing" to the autism organizations, rest assured that they aren't referring to you.

To be clear, I was only commenting on the neurodiversity thing in reply to the parent, not advocating for it. We agree that it is relevant for only a small percentile of ASD individuals.

And on second thought, it may make sense from a public health perspective to abandon labels for subtypes, unless the experts think the subtypes have different causes. But AFAIK the causes of ASD are unknown.

Understood. I'd argue that the need for additional classifications is fairly evident just from the comments in this thread. Saying someone has 'autism' doesn't tell you much in terms of what level of care they may need - those who fall into the neurodiverse crowd may require no care and perhaps minimal supports, while some require lifelong care.

The burden on families and society is quite different for these groups, and further classifications are necessary. There are also several related health patterns (digestive, allergy, etc.) with many who are usually more severely impacted which will likely lead to more research on causes. Some advocate for an additional medical diagnosis instead of just referring to the neurological. Down the road there could be a separate diagnosis for those.

"Disorder" was the technical term in the DSM-IV-TR, which dates back to 2000. (I believe it dates even further than that but I'm not a psychiatrist.)

It really depends on the severity of the symptoms, and whether the individual has developed effective coping strategies.

There is no "test" for autism, no blood market, no brain scan. What is the false positive number? This sounds like the diagnosis for "hysteria" in women 50 years ago .

Two thoughts on this. Note that I'm not explicitly disagreeing to you, just responding.

(1) No blood marker, no brain scan, true. But, it's something that does become evident in people later, so the test has later symptoms that it can be checked against for its error rate.

(2) It could be "hysteria", but it's still people acting unusually (at least later in life). Perhaps it's something that's changed in the way we raise our kids, or environmental, or changes in prenatal/birth-giving/etc practice. Any way, it's a change in our population and is interesting enough to follow.

Perhaps at high-functioning end of the spectrum you can get plenty of misdiagnosis, but certainly for the bulk of autistic people you can tell that by the age of 3 when a child simply ignores everyone around them as if people around them don't exist, can't answer simple questions, can't express needs, that something is really wrong.

Autism spectrum disorder diagnosed using a standardized "observation" (the ADOS) and/or a highly structured parental interview (the ADI-R). There are peer-reviewed papers which report on the validity and reliability of these instruments.

I'm weary of diagnosing behaviour that used to be considered within the norm, though maybe at the edge, as a medical condition.

Asperger's has no clear measurable part to diagnose, it is not treatable per se, and its symptoms are all within the normal spectrum of human behaviour.

There's nothing wrong with saying that a particular kid might need more support, but I wonder where it leads society if all not entirely within the norm behaviours start to be classified and handled as medical problems.

Studying academic outcomes would be a worthwhile goal here. But that's a 20 year goal - i.e. does the jump in diagnoses correlate with serious conditions, or are we looking at problems which might simply blur out had they not been diagnosed (perhaps with the offset that academic performance improves because we focus our efforts for people who are diagnosed vs not).

Direct link to the CDC report :

Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010 Surveillance Summaries March 28, 2014 / 63(SS02);1-21

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6302a1.htm?s_cid=...

The scary part to me is how the CDC chose to frame the new data. They put up a "10 things to know" (1) list to distill the data for the media and readers uninterested in looking at the full study.

One item in the top 10 highlights that 46% of these kids have average or above average IQ. What the CDC doesn't highlight in the top 10 is the 31% that are below! and the 23% that are 'borderline'. The glass half full (not even half) optimism dismisses the large amount of these kids who have a very serious condition. Kids that cannot speak, that wander and die, that will require lifelong treatment. Why does the CDC choose to highlight the minority with a future and not the majority that face a rough road ahead?

The second issue with the Top 10 is that it only alludes to better diagnosis and awareness as a possibility for increases. It doesn't mention any other possibilities, although most in the community are aware of well-publicized studies pointing to environmental conditions that show connection. (2)

1 http://www.cdc.gov/features/dsautismdata/ 2 http://time.com/25424/growing-evidence-that-autism-is-linked...

As someone who comes from the "gifted side" of the Autism Spectrum, its not that great. Having a brilliant mind is a great gift - but to be honest I would rather be of normal intelligence and be able to better understand how to be social than anything. Whats a brilliant mind going to do for you if your alone? Humans, even autistic ones are social creatures and require social interaction.

I do also agree with other posters that Autism diagnosis are on the rise due to a higher push for screenings of children, and awareness of autism. However I do think it still is possibly on the rise.

Aspergers is now Autism. I'm mixed on this, as even Aspergers has a spectrum. I've seen people with Aspergers that are near normal functioning, and those that are completley fixated on Star Trek to the point thats all they care about. I've also seen non verbal classic autistics hold down employment in a competitive employment atmosphere. The aspergers vs classic autistic has nothing to do with functioning level, it has to do with verbal delay (or it used to - its now the same).

>>1 in 68

I would like to see a geographic distribution heat map? Does anyone know of one?

This particular study focused only on a handful of states. The data is here. http://www.cdc.gov/features/dsautismdata/

Autism is the new ADHD. If 1 and 70 kids have a disorder that wasn't a thing 20 years ago, something is wrong.

I had some speech issues when I was a kid that led to shyness and difficulty making friends until I got a bit older. I'm sure that I would have been classified in the spectrum on today's standards. It's a hot diagnosis.

Not a psychiatrist, just a researcher, but you can't get a diagnosis of autism spectrum disorder without a second cluster of symptoms related to repetitive behaviors and restricted interests. Shyness and speech/language problems not enough. (It is understood that many children with specific language impairment, a separate condition, have problems with socialization early on.)

I read somewhere Silicon Valley has the highest Autism rate, it's likely high IQ gene made a difference too? Speaking from experience, early intervention is extremely effective.

What makes you think higher average IQ is associated with autism? (Rain Man doesn't count.)

The state with the highest reported rate of autism spectrum disorder is Utah, followed by New Jersey. The states with the lowest reported rates are in the Deep South (which is probably more about access to healthcare than actual prevalence).

Edit: added "average"

The rates you are quoting (assuming you are using the study the 1:68 came from) are from a single study that didn't account for all 50 states. It was less than 20 states.

I was quoting from earlier CDC reports. No study has looked at all 50 states to my knowledge (though tell me if you know of one), and even between participating states there are irregularities due to what kinds of records the CDC has access to.

could this be just a shift in how we measure and disagnose behaviors which lie outside the norm?

not long ago this behavior was not tolerated at all, and an autism diagnosis was undesirable. now we have more resources to identify and tolerate a broad range of behaviors

probably autism has not grown - it is as high (or low) as it has ever been. maybe we can identify autistic behaviors in figure of the past; maybe our own relatives.

Oh boy. My fear is how anti-vaxxers will use this news.

Were anti-vaxxers bound by the rules of valid inference, this would be a problem for anti-vax. Thimerosal, the compound supposedly responsible for the vaccine/autism link, has been phased out in the west but incidence rates continue to increase.

Well, how about not diagnosing your kid with autism just because he's an uncontrollable little bastard, just to justify your bad parenting?(This includes ADD, ADHD, ASD).

That should bring the stat down.

Qualifier: not all obviously, but it has certainly become a way to remove personal responsibility as a parent.

We seriously thought we were bad parents until a doctor we saw in passing said we should have my daughter evaluated

This opened up options for medication and therapies that will help keep her from shooting up a daycare someday We hope - her tantrums are so bad the neighbors have called the police

That's the worst part of ASD to me, and frankly one of the least talked about

That is a very ungenerous/unkind position that many folks take when they don't know WTF they are talking about.

Right. Care to share the scientific details of how ASD/ADHD/ADD is classified, since you're such an expert?

Abnormalities in a kid do not instantly indicate a disorder. Yet doctors are quick to prescribe adderall to the first person that comes in their office and claims they have "trouble concentrating".

Overprescription is of course a serious problem in the developed world, but that doesn't mean that doctors are using autism as a catch-all diagnosis.

There are specific, medical criteria which need to be met for a diagnosis, and these criteria are outlined in the DSM V [1]. These are the details on how the disorders are classified, since you asked.

[1] https://en.wikipedia.org/wiki/DSM-5#Neurodevelopmental_disor...

This is the classic "blame the parents" explanation (see refrigerator mothers: http://www.autism-watch.org/causes/rm.shtml). It frequently gets the causality backwards: the kids don't act that way because of their parents, rather the parents act that way because of the kids.

The vast majority of parents don't want a diagnosis so they can blame it on the disease and ignore their responsibility. They want a diagnosis because they desperate for something, anything to help their child.

If it's so classic, care to explain why the autism rate has risen so much(long term)? If a disease that gets diagnosed based on a spectrum of behavioral cues is on the rise, could you maybe consider that people are just quicker to blame autism?(and cover a larger, milder range of behaviors)

Hah! I wish my autistic kid was merely spoiled and undisciplined. On the contrary like many autistic kids my kid is very quiet, too quiet, in fact doesn't even respond to pretty much anything going on in the area. I envy parents with spoiled kids, at least those kids can express a personality.

Hopefully the CDC is a little more thorough than simply asking parents if their kids are autistic.

Reply on news.ycombinator.com