Typically, an excellent source for unbiased information about scientific research is the United States government.
When I want to know about geology, I go to the USGS. When I'm researching oceans or climate issues, I go to NOAA. When I'm curious about what's up with space exploration, NASA's a great resource.
When it comes to autism, though, many people doubt the legitimacy of the research findings supported and/or published by the CDC, the NIH or NIMH. Not only that, but many doubt the findings presented by university-based researchers funded by the CDC or NIH.
Where else to look? Pharmaceutical firms do fund and publish research. But parents are even more skeptical of findings underwritten by the likes of Merck or Pfizer.
Then there are the privately funded researchers. The folks who get their money through organizations like Autism Speaks... or even from organizations with a biomedical slant, like Generation Rescue. But plenty of people doubt the accuracy of findings that are funded by groups with a particular hypothesis to prove (e.g., vaccines or specific environmental elements are responsible for autism).
You could, of course, rely on the Internet and the broadcast media to keep you up to date on autism research and findings. But that would mean counting on bloggers, talk show hosts and sound bites to provide reliable, balanced information... not something I'd do on a bet.
Or you could ask friends and neighbors for their opinions, experiences, anecdotes and memories. Unfortunately, though, these are notoriously unreliable: individual people are likely to forget details, make guesses based on partial information, or repeat what they heard from other friends who heard it from their mothers who picked it up from a report on the local TV morning show...
So who DO you believe on issues related to autism and science? And how do you decide whose opinion counts?
You basically can’t trust anyone; you must educate yourself on every aspect of a subject and form your own opinion. You most definitely cannot knee-jerk trust the government.
Take global warming. The US government web site used to have a graph of the Vostok ice core data. A British documentary came out pointing out that the Vostok ice core data, so prominently displayed in Al Gore’s movie, actually showed CO2 levels following temperature by 400 years on average. I printed it out from the US government website myself, and studied it, and showed it to other engineers. Our government’s solution to this revelation was to pull that graph and replace it with a graph which compressed the time scale such that you could no longer discern 400 years out of hundreds of thousands. The UK website took it a step further; it re-scaled the CO2 with respect to temperature such that they were no longer matching from a geometric average of full scale point of view, then they biased the CO2 scale down to create the illusion of CO2 being ahead of temperature at the beginning of a cycle. I am not a sycophant repeating something I read on a right wing website; these are my personal observations. Al Gore blamed the Aral Sea drying up on global warming, yet the actual reason was the building of dams in Tajikistan and Kyrgyzstan by the Soviets. The water of the Amu Darya was diverted by a canal to across the Kara Kum desert to Ashgabat. This is all easily discerned by getting out a map or using Google Earth or reading Wikipedia. No one in the media challenges these obvious and easily fact-checked lies.
I am always careful to hide my identity when I write to this blog, because I have to keep my Asperger’s in the closet. So I cannot reveal specific projects or travel I have participate in, since it would point back at me, but trust me, I KNOW Central Asia (been there), and I can read the Vostok study IN RUSSIAN.
We have had global warming since the middle of the last ice age! Over 10,000 years! What’s new? The Vostok data shows cycles which seem to match Milankovitch cycles reasonably well. Records of sunspot cycles versus short term temperature swings also exists for over 2000 years of history, and it all matches up. There are records of the Thames freezing, of even the Nile freezing. If these records show drastic swings in temperatures by natural cycles, why would anyone worry about alleged subtle anthropogenic changes?
If an evil madman decided to find and burn every fossil fuel that had ever existed on our planet to put enough CO2 in the air to permanently alter our climate, he would fail, because he still would not have put back the CO2 locked up in carbonate rocks like limestone, chalk and marble or carbon trapped in shales. He wouldn’t even come close to putting back all of the CO2 into the atmosphere, and even if he could, he would only be setting the clock back to a time when life thrived in the oceans creating the limestone and on land creating the coal.
Use your common sense. Then ask yourself if you can trust what you read on a government website or in the main stream media.
As a researching finishing my dissertation this semester, I must admit that it is frustrating that no one seems to trust any researcher — even when I have no clue who funds my projects because the university “pools” the funds for block grants.
I’ve heard just about every strange claim. I’m either a tool of evil corporations, the government, or yet another “neurodiversity” radical who doesn’t really understand the plight of families with more extreme cases of autism. It is a struggle to get people to understand that research can and should be a dialogue with the participants. Instead, most people have already determined that research either must cater to their beliefs (which isn’t research), or it must be dismissed as manipulation.
I had a meeting today with my department as I adjust research projects. It is a challenge, so I’m not sure what the future holds. Too often, the Internet has complicated matters, ironically. Parents have their own “research” supporting whatever biases they have.
I have to agree with C. S. Wyatt who brings up very good points. It seems these days who is doing the research and how it’s funded means more than the content of the study itself. The contents of the study itself should provide some kind of valuable info or no value (some studies of less than 50 as an example doesn’t really depict the majority of a population) yet the value of the study more reflects on what one tends to believe as theory for causes of autism and vise versa. The title “When It Comes to Autism and Science, Whom Do You Believe?” hit it deasd on; it shouldn’t be about ‘whom’ at all and when it is about whom, then one is only looking at studies which reflect what they only want to believe and you see this all the time. Some one offers a ton of links to one type of study yet when some one questions it or offers another study, it’s attacked and pretty much that attcking and not accepting all studies of having some sort of value pretty much only happens on the Internet.
I’m inclined to trust good science (hypothsis backed up by reasonable support/fact) and dismiss junk science which is any belief, intellegent or otherwise that is not backed up by reasonable proof. Of course the more variables involved the more room there is for error. When it comes to certain autism related subjects (cause, treatment etc.) there are still too many variables and holes for anyone to be conclusively “right” about anything.
I’m not trying to be catty here, I just think it’s important that you don’t let your own frustration with a few (or maybe even a lot) of frustrated people mess with your own objectivity. You can’t expect people to unbiasedly trust you if you can’t unbiasedly trust them.
As far as trusting researchers, I have no reason not to trust someone collecting information to prove a point but if they promote it as fact, they better be able to prove it. C.S Wyatt, I am a little concerned by your comment that “Most people have already determined that research must cater to their beliefs, or it must be dismissed as manipulation”. That’s pretty cynical and you have no proof that this is the common thought for “most” people… unless of course that is what you’re researching and you have asked everyone on the planet
Bill, could you enlighten us with your qualifications to be analyzing Vostok ice core data? They certainly must be impressive, given that the world’s thousand or so degreed climatologists are not global warming deniers.
Bill is correct about the Vostok ice core data. That was in fact a blunder in Al Gore’s movie, because errors like that allow denialists to say “you see, the mainstream was wrong.” And the mainstream sometimes is wrong.
However, listening to (real) experts is a good heuristic. It’s way better than just credulously accepting what you read in websites and so forth.
If you don’t have the skills to evaluate scientific methodology and the relative importance of different types of study limitations, if you don’t the time keep up to date with the state of a debate, accepting the scientific consensus is the best possible heuristic.
Our society has become so accustomed to putting a spin on absolutely everything that it is extremely difficult to decide who to believe at any time about almost anything. Rapid information outlets, such as the internet, have only compounded the problem as everything gets debated to death and the issues become progressly more clouded. Less and less ever gets proven it seems because old opinions and old data are always easy to find and too many times the stuff advertised to us as “new and improved” has failed to be either. There also always seems to be some faction out there who could possible try to wrangle a profit from putting any given spin on any situation, so trying to follow the money to determine the truth seems to me to be a bit of a frustratingly fruitless endeavour. Back in the days before all this instant media, society may have been legitimately criticized for just consisting of blind followers, but today it seems to me that more and more of us simply find ourselves becoming too confused to risk following anything – blindly or otherwise.
I agree with Mary. Soceity as a whole right now loves to proclaim that we are becoming “one” and globally unnite. But in reality the slogan “Trust No One” has never been more popular. We are all on our own path, doing our best to find answers and solutions to life’s problems. And that is never more true than with Autism where one therapy or treatment or diet can be miraclulous for one child and have little or no affect on another child. Finding answers for your child has never been more difficult than it is today then the opinions/research/testimonies/stuff is so easy to find but so difficult to discern.
I have a hard time believing research any more. I am really not certain that money or special interest do not skew how research turns out, especially concerning the cdc and drug research. I have just seen too much. Just in the Autism research, I saw my son reduced from a sweet intelligent, calm, normal 4 year old to a screaming shell of his former self, losing skills by the day and deteriorating by the week for 5 years. The only thing that happened was a dtp vaccine and accompanying 105 temperature. All the time I was hearing that vaccines were not the problem; research showed there was no connection. More and more I am learning to take nothing at face value and I hate it; not being able to trust the integrity of those over us.
I know what happend to my boy and I know what works. I do what my evidence scientifically proves to me. I think the main research and focus needs to be shifted to the person who is suffering and understand the cause and effects of any and all possible elements.
I agree there are money influenced science, and I know if those issues are relevent to my child’s personal issues.
I hate the political issues that the supression of Data and the true information is the result. I think it is wrong to have the people with autism not helped and the opportunities for them are not provided, when the research that is politically motiviated is funded heavily by great media campaigns.
Try medical journals all over the world. You get can get a better picture. But must read the journals critically, some may be biased, too small a number or a non-reputable one.
dwright, did you apply for compensation to the US Federal Court of Claims? It sounds as though you meet the criteria for a table injury.
Dwright, and it’s not just any “105″ temperature that causes this. My kids get 105’s with the flu, with unknown causes and with vaccines, there is more to this than that 105! That dpt had a toxin that is yet to be explained to the public, I saw my happy guy lose steps too, especially language and “cuddliness”. He meltsdown and disrupts family life for everyone, then he pops back up for a bit, it’s like a “spasm of nuttiness” that we have to wait out. He certainly doesn’t enjoy it any more than the rest of us, it just happens. Many parents hide these episodes, I’ve had people say, “oh mine does that but I don’t tell”, and now that my “cat is out of the bag” I get phone calls for help. Last night I got a call from a mom of one of my son’s school mates, asking if “at midnight” he could come over because he was melting down in a parking lot and he said coming to my house would be “okay”. I have let her do this before but last night my son was over his Grandmas, so it wouldn’t work. Some have criticized, saying that we enable meltdowns, they are no more than bad learned behaviors. Why did so many learn them within weeks of their dpt shots? Why did they stop talking and hugging and get a “look” in their eyes during that same time frame? Certainly not because they as babies decided it would be “fun” to be bad. Compensation? Never happen!
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