Monday, June 7, 2010

Muddled Monday : Church and Astroturf

Flickr photo by nycbone
Monday tends to be one of more "interesting" days of the week.  People have had time to sit around and noodle over the weekend and seem to feel the urge to say the darnedest things on Monday.  Today was no exception, so I thought I would share two of more entertaining "huh" moments of the day.

The first (and funniest) item comes from the autism blog at where Lisa Jo Rudy talks about how science should trump personal experience when it comes to dealing with autism -
It's no small task to sort through the crap (and the contradictory studies) to make smart decisions for a child with autism. And personal experience will always color our choices. But hopefully most of us will take a moment to review the evidence before assuming that our personal experience is sufficient to fully understand the causes, treatments, and science of autism.
OK, fair enough. You do have to consider the fact that what you think you saw might not have actually happened and that the scientific method does yield more accurate results. But then in the comment, she goes on to say that -
Nor am I hopeful that we will suddenly discover a key to “recovery” – especially since, in the vast majority of cases, I don’t think people with autism are injured (and so they have nothing to recover FROM).
This doesn't strike me at a particularly scientific statement.  I can't help but wonder if the source of the statement isn't other peoples opinions of autism.  Maybe I missed the study that just discovered this.  But wait, the coup de grace comes later in another comment when she apparently forgets the point of her own post and says -
Personally, I take most scientific studies with a grain of salt because I know that the people funding, setting up, conducting and interpreting the studies all have their own perspectives and agendas. But that doesn’t mean I feel that the scientific method is worthless.
And all I can say is what the ?!?!?

We can't trust personal experiences and we should take studies with a grain of salt, so that leaves what, religion?  Is it time to go to church to find out what we should believe about autism?  I hear there is a new chapel of Neurodiversity opening soon.

And moving right along, we come to the launch of the hug zone, as announced on the premier anti- anti-vaccine pseduo-science site, Left Brain Right Brain.  They are running a shameless (self) plug for a new "blog/book project" called "The Thinking Person's Guide to Autism".  This is apparently a new blog that has all of two posts so far but describes itself like so -
The Thinking Person's Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed. We want to help people with autism and their families make sense of the bewildering array of available autism treatments and options, and determine which are worth their time, money, and energy.
OK, so you want to tell me what the best treatments for my children are?  Given the incredible breath of problems associated with autism and the diversity of possible treatments geared to deal with them, how exactly do you intend to do that?  Maybe you should know a little bit more about my (or other people's) children's specific needs before presuming to offer advice on what would be worthwhile for them?

But then it gets even funnier -
Think of us as a little bit of Snopes for the autism community -- trusted, accurate, and friendly.
Of course, trusted, accurate, and friendly - since you told me you are, I guess I have to take your word for it.  LRBR is plugging it, so it has to be err, trusted and accurate.  And of course, we all know how friendly LBRB is....  Uhm, this wouldn't be a you scratch my back I scratch yours sort of thing, would it?  Hmm, I wonder what other blogs they link to - Autism Science Foundation, Kristina Chew, Left Brain Right Brain .... No, no sign of back scratching or an ideological bias here.

But the plug  from LBRB still bothers me.  Those folk aren't know for a rational approach to autism and are very firmly in the deny-its-a-disability ND "acceptance" camp.  This isn't going to be yet another autism is great site, is it?  You will be publishing articles that talk about the real challenges of dealing with autism and are honest about the science behind autism.  Wait, what's that tagline on the header on your site?
Informed decisions made with love
Of course, because what's a thinking person's guide if the decisions aren't based in love?  We all know that those "other" people aren't thinking people at all AND they clearly don't love their children.  But if I read your trusted, accurate, and friendly site you will tell me exactly what treatments are worth the "time, money, and energy" AND I get to love my children too?  Where do I drink the kool-aid?

You gotta love Mondays.


  1. Oh yes, you gotta love it!
    From the reflexive side, it is evident that the blogger you mention with the "Thinking´s guide..." had a bad experience with A DAN! doctor. I have had near 20 bad experiences with mainstreamed doctors- and many more if I consider the contacts by e-mail, phone , and others.
    Now, with the incredible amount of experiences related to MANY aspects of CMPs in Autism - and my son demonstrated to have very high levels of Hg in blood after 6 months of GFCF soy free diet- I wonder why "they" think we must consider their words at face value of any value more than anecdotic experience and individual familiar decision. If they did not want to research further because of one bad experience, that was their choice. I wonder why the choices of others are wanted to be imposed on me as the right one without any kind of knowledge of the kind of approach I have on the topic.
    And the is so easy to consider many of us a Cult like and avoid the objective a final reading the only thing that wait for these people is disappointment. Medical problems in at least my autsitic child were very much complex than they think and only with an adequate approach they were properly detected, tested, diagnosed and treated.

  2. You know AJ, my son has near dozens of medical problems. At this point this kind of revolted anti- anti biomed parents, anti anti (supposed in advance) antivaccine parents, anti- whatever "we think it is not scientifically consensuated in the mainstreamed that must be pseudoscience because we say it" really makes me wonder why they kept in a photograph in time their ideas, since near 6 years ago. And the sad aspect is that with all this position and tactics ND is loosing credibility more and more, even in the aspects some years ago I could agree were important. In my personal situation with my son the approach proposed by ND was completely useless. Simply and clearly. And even more potentially extremely dangerous for his health.
    Anecdotic evidence is anecdotic evidence, one side or the other. BUT the difference is when you have clinical testing I suppose....and doctors concerned enough to research wtih you for your child health. Now, I suppose that this is the difference between facts and beliefs.

  3. I think the ND movement is having a lot of problems at the moment, as evidenced by the idiotic comments by its members regarding the asperger/autism separation and implosion of the autism hub. Most of the members seem to be regrouping and only putting up token support for their ideas, leaving only the extreme elements of the ND movement waving the acceptance flag and the closet members to worry about.

    As far I can see, that is a good thing for children with autism. Now we just have the mainstream medical community onboard - and that will just take time.