Stop Bashing Autism Speaks!

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From what I see AFAA is a subsidiary of Autism Speaks according to their contact e-mail, that or they're sharing the same mail server. But I found these page interesting:

http://www.afaa-us.org/site/c.llIYIkNZJ ... rtners.htm
http://www.afaa-us.org/site/c.llIYIkNZJ ... Autism.htm

I can't complain to be honest and that is saying something. They need to be a bit more serious about it though and allocate more money for such programs (and not just government money, I'm talking about feeding Autism Speaks donations into it too).

I only have one issue with AFAA though, do they actually create initiatives that directly see Autistics obtaining employment and services they need, or are they just a think tank?

If they achieve the former, then my no complaints stands but if it's only the latter then I see a problem. I don't like the idea of money getting eaten up in bureaucratic functions like reports and meetings.

I'm sorry if you understood the bullets to be two things lumped together but normally bullets identify separate points; I didn't think that would be confusing. I provided the website link for additional information, including reference information, and am glad you were able to obtain the clarification you desired from that link.

Interesting point. I guess time will tell.

Nov, 6, 8:11 am on page 26, a few posts above the post where you asked this question.

HALLELUJAH!

You have seen the light at last and just as I was giving up.
I have highlighted it in bold for all to see.

So the CDC quotation that has been mindlessly repeated by yourself and many others across the internet on so many websites:
"•About 40% of children with an ASD do not talk at all. Another 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood. "
Is factually incorrect.

What it should say is

•About 40% of the children with an ASD that we surveyed do not talk at all. Another 25%–30% of the children with autism that we surveyed have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood.
With a footnote underneath explaining this particular sampling process and cautioning that the results were therefore probably biased towards the low functioning end of the spectrum.

But by mindlessly quoting from the CDC site people are creating the false impression that 40% to 60% of all children with an ASD can't talk and coming to the false conclusion that approx 1 in 200 children in the USA can't talk.

So anybody reading this thread, when you see this statistic mindlessly quoted elsewhere, please challenge it like I'm sure Aghogday will now do and show people why it is completly misleading in the format stated.

Aghohday, I also noted your comment that,
"I haven't seen the 40% statistic on children with ASD's that cannot speak, as a reference on the autism speaks website, but other organizations do cite this government statistic."

I suppose I should double check that considering your past record but for now I will take it in good faith.

It is surprising as one would think that Autism Speaks would want to broadcast such an alarming 'fact' to encourage more donations and grants.

But then again they are predominantly scientists who would understand that it is not true as stated and wouldn't want to get caught peddling such misinformation.

However they and their partners at the CDC have been more than happy to sit back and allow countless other websites to spread this misinformation over the years.

And heads should roll at the CDC for that.

I am so happy that after all these pages this thread has at last been able to expose a classic example of misinformation about autism.

Well done Wrong Planet and well done Aghogday although you did make it very hard work!

I've already suggested that the general statistic for autism in the US is limited by design, probably 10 times in this forum, and explained why I believe it is. However, it is the most reliable data that is available in the US at this point in time for the entire nation. It's as good as it gets.

It seems like you are reading my statement above that you bolded that I was suggesting that the research for the children that cannot speak was based on that same demographic as the children that the government surveyed for the 1 in 110 statistic, if so that was not what I stated. I said it was not based on the same statistic, instead the particular demographic studied for the research in 2004, a completely different study with a completely different method of research, as referenced on the website. The website includes a link to the research for the 1 in 110 statistic if you want to read that as well.

It is rare that any research is done with a significant number of individuals that are high functioning because the numbers identified with diagnoses are rare. My understanding is that is not just a problem in the United states but for most countries in the world. Autism has been a diagnosis in the DSM since 1980.

The condition of Aspergers was not invented until 1994. Everyone didn't run to the doctor at the same time to find out if they had the condition; it is mostly school children in the last decade that have been screened for the disorder; it doesn't present the same profound symptoms of classic autism, so it is not as easily identified, and much more likely to be missed in children.

Any statistic is only good as the demographic identified. There is no way to measure a demographic that has not been diagnosed, unless an effort is made to screen and diagnosis that demographic, as was done in the UK on Adults and done in South Korea on children.

Chances are if the researchers in the UK used the same screening method of children as they used for adults, they would find a number like 1 in 38 for children like was found in South Korea, instead of the current 1 percent in the UK for children that matches up with what we have in the US.

If you think the numbers of diagnosed ASD's are too low in the US at 1 percent for children, what leads you to believe that the same problem doesn't exist in the UK. Are you sure they don't use similiar methods of statistics to measure the prevalence children there? I have presented links of evidence for what I am stating. You tell me that your statistical numbers are more accurate where you live, but you give no numbers or links to research, as I have, to back up what you are saying.

Government statistics on cases of children with Autism in the US are based on diagnosed cases, not by screening the general population in the process of gathering the data.

Do they do this a different way where you live. If you don't know, I can probably research it myself to find out. You haven't specifically stated where you live, other than giving the link to the screening research done on adults in the UK, so I'm not sure what your country of origin is.

Again per my previous post, it appears that you misread my statement. I stated the 40% statistic had nothing to do with the research for the 1 in 110 statistic, that I suggest is limited in measuring higher functioning cases of autism. It seems that you thought I was saying they used the same demographic. No, the scientists in that research used their own method back in 2004.

Also considering that the research was done in 2004, only probably five years after any kids were getting diagnosed with aspergers at any significant rate, that does lend a potential limitation that warrants updated research in the area, I think. It's not a hidden fact though that the research was done in 2004, it's the same research that's been quoted now for 7 years.

The problems in identifying higher functioning autistics, is not one limited to poor research design, it is also simply limited by the low number of diagnosed cases in the population, and difficulties in finding those people other than individuals in the school system, that are diagnosed, on a reliable basis.

If you can show where in your country they used a significantly different method of measuring children with autism, and came up with a significantly different result, your statement regarding the CDC might warrant some concern, but at this point there is no evidence that you have presented that any other country has a more efficient method of measuring autism in children.

I enjoy reading research and finding potential improvements in the research, if there is a better, more reliable way, somewhere else to do this, it would be interesting to see how it is done.

I have just picked myself up off the floor.

Let's keep this really simple and ignore all the side issues you have raised in your responses.
I am in total agreement with you about your statement that I highlighted in bold.
Nobody is disputing the 1 in 110 statistic. It is sgreed there or thereabouts around the globe. It is lodged in the minds of everybody that takes an interest in autism. It is the figure that comes into everybody's mind when we talk about the ASD population.

So when people read the isolated CDC quote:

"About 40% of children with an ASD do not talk at all. Another 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood. "

with no appropriate caveats or provisos people will read it as

About 40% of the 1 in 110 children with an ASD do not talk at all. Another 25%–30% of the 1 in 110 children with autism have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood.

And hence they come to the absurd conclusion that 1 in 200 US children can't talk.

I can see that which is why I queired it in when you first used it, Autism Speaks can see that which is why they don't put it on their website and anybody else with a basic scientific background will see that to quote that statistic without the appropriate caveats is wrong, misleading and alarmist.

Now Aghogday, with a simple yes or no answer, do you still believe that it is right to use that quote as you did on this website and as many other learned people have done on many other websites?

The quoted statistic is supported by peer reviewed research, provided by the US Government on the CDC website. There is no less reason to believe that statistic than there is to believe the 1 in 110 statistic, unless one can provide a flaw in the method of research, or alternate research to refute it.

I haven't been able to find either, other than my own suggestion for newer research, but I'm in no position to fund it. I invite you to present alternate research to refute the statistic that the government currently supports, if you can, anywhere.

The fact that about 40 percent of children were reported as non-verbal, doesn't necessarily mean that they won't gain some ability to speak later in life. Children were surveyed, not adults, so that would remain to be seen, a good reason for a longitudinal study of this type.

And yes, I do believe it is perfectly acceptable to present government statistics on autism here, as it is a standard for statistics that are commonly used by many reputable sources.

It's a simple yes or no aghogday.

A yes or no answer was all that was requested and would have sufficed.
By filling your response with waffle to try to justify your answer only serves to diminish it.



As I have repeatedly stated nobody is is disputing the research methods or the raw data of these surveys.
It is the lack of appropriate caveats that leads to misleading interpretations of the results that I have constently argued about and that you keep evading.
As a general rule it is a good idea to read posts before responding to them.

Aghogday

Now you are demonstrating your lack of knowledge regarding language aquisition theory.
Incidently psycholinguistics is a subject that I have a great interest in working with the silent minority.

Aghogday [quote]
I do believe it is perfectly acceptable to present government statistics on autism here, as it is a standard for statistics that are commonly used by many reputable sources.[quote]

Governments and large reputable organisations often produce selective statistics in order to promote their policies and products.
Spin doctors and marketing depts are always careful to not cross the legal line.
That doesn't make it ethical or acceptable to mindlessly repeat these stats when you know they are misleading but of course they rely on people like you to do just that.

EG The Codswallop Cat food Co (a large and reputable organisation) put out an ad stating that 8 out of 10 cat owners, that they interviewed, said that their cat preferred new improved Codswallop.
That statement would be perfectly true and legal and you would tell all your friends about it.
Some time later you had lunch with a marketing executive who tells you that they only asked cat owners who worked at the Codswallop factory.
So the survey was not based on the 1 in 110 people (say) who own cats that you had assumed but on a potentially biased subset.
But you say you would still recomend Codswallop to your friends because they are large organisation and its often repeated by reputable broadcasters.

There is no difference between this codswallop and you saying this

"The research on the percentage of autistic people that cannot speak is not based on the research for the 1 in 110 statistic, it is only relative to the demographic studied in that particular research. "

followed by this

"I do believe it is perfectly acceptable to present government statistics on autism here, as it is a standard for statistics that are commonly used by many reputable sources"

It would appear that you are a man with very low moral standards.

At least in this instance Autism Speaks have a higher moral standard than you and refuse to splash this misleading and alarmist statistic on their website.

A simple Yes would have been a better and more honest response. It would have saved me from having to waste my time spelling it out for you yet again as above.

I would then have responded by giving you a sincere apology because it would have been clear that you have a poor grasp of theory of mind and cannot see how other people can misunderstand the statistic as you quoted it.

I should have been more considerate as this is after all a ASD forum.

I would have apologised profusely for arguing so forcefully to try to get you to understand something that you are mentally incapable of understanding.

I am sorry, its not your fault its just the way you are.

Please accept whichever response you feel applies to you and disregard the other.

For whichever reason I will not debate with you again.

I'm under no obligation to provide a restricted response. I doubt you are under such a restriction either.

Are the tactics here to baffle with BS?

What an awful, wordy, piece of political diatribe