Perhaps the largest problem in the autism world is a lack of trust. There are a number of factions out there in the community, and it seems like none of them trust the others.
There are parents who feel that vaccines cause autism, and they don't trust the medical establishment. There are parents out there who feel that autism is a gift, and they don't trust anyone who thinks that autism is a disease. And then there are the rest of the parents who don't really care about ideology but are just trying to help their children overcome their autism, they don't trust people with an ideological axe to grind.
There are high functioning adults and adolescents who feel that autism is their identity, and they too don't like anyone who says anything bad about autism. Then there are the adults with autism who are actually disabled by it, they tend not to trust people trying to whitewash autism. And then there are the rest of the lower functioning people with autism, and we don't really what they think because they lack the skills to speak for themselves in society.
Then there is the medical community, and they don't trust anything that didn't pass the popularity contest and get published in a journal.
And of course, then there is everybody else who doesn't fit into one of the nice, tidy categories above. But the point is most of these groups don't don't trust the other groups. Sometimes this lack of trust can be reasonable, while other times, it is not.
Take for example, a recent post on Age of Autism concerning the lead author of a recent genetic study - "Scherer of Nature Autism Gene Study Fails to Disclose Pharma Funding As Competing Interest". The point of the post is that the lead author on the study holds the "GlaxoSmithKline-CIHR Pathfinder Chair in Genetics and Genomics at the Hospital for Sick Children and University of Toronto" and, since vaccines cause autism, this relationship should have been declared as a conflict of interest in the paper - at least according to AoA.
The only problem is that this paper had nothing to do with vaccines, gut problems, or any environmental factor that could be involved in causing autism. The study in Nature was about rare genetic variants that might be linked to autism. This paper really had no relationship to vaccines whatsoever and yet AoA still jumped on the researchers simply because they published on autism and possibly had funding from a vaccine maker.
It would be easy enough to dismiss this post as the entire premise is rather flimsy, but I think it might be more useful to take a step back and ask why AoA published it at all. I believe the problem is, quite simply, a complete lack of trust in the medical profession and the pharmaceutical industry.
I can understand why this community would have their doubts about companies that make vaccines, but at the same time, most things are not going to be a conspiracy to cover up a possible relation between vaccines and autism. This was a pure genetics study and nothing in it precluded a possible role for vaccines in causing autism, yet it was still denounced because of a tenuous tie to a vaccine company.
Maybe it is time to put down the ideology and stop looking for a conspiracy in everything.
A nice summary of the various group ideologies out there.
ReplyDeleteI enjoyed reading this.
We would definitely fall under parents who think it disables their child and just work to teach him and try to make his life better. We have no ideological theories and really just want to work with and not against everyone out there. But there are a lot of closed doors you face when you have an autism label, there is no doubt about that. This is mainly due to lack of trust.
I try not to get too involved in the conspiracy stuff, but at the same time I am very frustrated. There is a lot of info in med journals, and even an AAP published article proving that for some of these kids there are gi issues that need to be addressed and the media portrays this incorrectly (contributing to the lack of trust). I have seen this work miracles with my own son. If we had known about this 40 years ago my brother would be better off. So this tends to be my focus.
ReplyDeleteYour blog is one of the few I read that dosen't pertain striclty wi gi/diet. You also present these topics in a thoughtful and readable way.
Hi MJ -
ReplyDeleteIndeed. The guys at AOA are so hyperfocused, they can't tell that they are actually part of the problem. And this is coming from someone who is highly skeptical of the claims that our existing research is sufficient to answer the question.
They are creating tin foil hats and parading around in them, seemingly confused as to why they aren't being taken seriously. They are their own worst enemy.
- pD