If you remember (or read), last time I was questioning the site's stated mission of being a "trusted, accurate, and friendly" source that was "not interested in negativity". I was being a little flippant in what I was saying but the general point was that you can't just claim to be these things - you have to earn it. I was also skeptical because of the people who were promoting them. It is unfortunately one of life's truisms that can you tell a lot about people from the company that they keep.
Well, if the very first post on their site is any indication of where they are headed, they have proved me right. The post is called "Identifying and Avoiding Autism Cults", and here is an excerpt to give you a taste of what the post is like -
I wish someone had given me this frank advice after our son's diagnosis, and prevented my husband and me from becoming one of those frustrated, susceptible post-autism-diagnosis couples, had helped us avoiding falling in with a moderate autism cult, Defeat Autism Now! or DAN!.That's right, the "informed decisions made with love" site comes out slinging mud by calling a large segment of the autism world a cult. You may agree or disagree with DAN! and how they attempt to help children with autism, but I don't think that anyone would calling a group of people attempting to help their children a cult is being friendly or non-negative. As for the main point of the post, well, I guess they don't really care about accurate or evidence based either.
Hi MJ
ReplyDeleteTo choose a certain group of thinking is one thing, to consider cult- like those dissenting without the knowledge of the appreciation of the heterogeneity of such a group is one of the ND major mistakes, with many others. We agree that the biomed is heterogeneous today in position, but the extremists are not representative. Each family has a voice and has a personal/familiar approach to biomed.
Again, anecdotic evidence presented as a fact. Again, one doctor is one doctor not the doctors. And I can tell because I found in mainstreamed doctors prone to help me. It was a question of the people who are doctors , not of the supposed opposite camps of alternative vs mainstreamed. This is a fallacious dichotomy.
BTW, when you have clinical analysis, these are not beliefs. At this point, I have found challenged many of my ideas on the CMPs in my son due to his clinical studies. This way, there is no opportunity to beliefs to make you follow the wrong path. Objective and clear clinical analysis. Now, without a proper protocol of testing, that there is not available, without those with knowledge to know the importance of them in subgroups of autistic children, how is it possible to dismiss at face value findings of other parents in their children? The protocol of testing in our case was evolving in time, with a detective work that was very fruitful, but it was not available when we begun.
To compare you need to use similar protocols of testing- and also in methodology of testing.
Autism is very complex. I do think that objectivity is one of the key aspects to maintain and one that is really at very low doses around in the ND camp.
hi MJ
ReplyDeleteI saw the answer to your post in that Blog.
Very unconvincing, IMHO.
I didn't find the response to be very convincing either (the response is here if anyone wanted to read it). It basical sounded to me like "I would be OK with them joining the cult if they had a good reason".
ReplyDeleteI would agree that it is certainly hard to remain objective when it comes to autism, especially considering that everyone's experiences are so different. I find it highly likely that there are many different forms of autism and each will respond to different approaches.
So when you see that one approach doesn't work for you, it is very easy to say that that approach just don't work or the people who think it does are just fooling themselves. Or can say that they are part of a cult, as was done in this case.
But that is the problem, to consider in advance that someone is fooling him/herself because of different results doing some approach. In my experience, I have not found one parent doing biomed that have said, this or that approach did not work therefore such parent fooled him/herself. However, it is also true that if the trials are done short times or the experience of doing certain approaches is not taken into account no results are expected- such as it happened with the Rochester study....
ReplyDeleteBut when this or that approach worked for us doing biomed, in general in advance it is considered that we fooled ourselves for the critics of biomed.It does not matter what clinical studies you have, or in what point of the planet you are....
The situation is such that is a no-win for us. What I say is
1-You have researchers doing double blind studies that do not take into account the enormous amount of experience accumulated these years by parents doing biomed
2-When this studies are published you are told " See what this controlled study says!!
3-When you point out the problems you are told
Well, nothing is good for you if it is not the results you want
4-When you protest and present your experience
"Anecdote!! Anecdote!! not useful and useless for EBM
5-When you present alternatives to test more complex hypothesis, these are considered unethical or extremely expensive or impossible..
Clinical studies designed to look at the biochemical/mitochondrial/metabolic/inmune adverse effects of antibiotics and vaccines are neither unethical nor impossible expensive or impossible to test. You only needed to know what to test a group of children before and after antibiotics- even considering gut flora status-before and after each round of vaccines, such as they are being done now and to carefully look at those who present adverse reactions, and considering carefully what to do next. With the high technology methodologies you even do not need high blood extractions.Even more other fluids could also be studied.
I do think that the situation is of political will, not of scientific /ethical nature.
Maybe the parent's who are willing to try biomed and have had success with at least one treatment are more willing to give other treatments the benefit of the doubt?
ReplyDeleteI know we started down the path of treating our children's autism, I was highly skeptical that something like a diet (or supplements) could help. But my wife pushed the idea and made an appointment with a reputable doctor in our area that took a biomed approach. After talking with him, we decided to try some of his suggestions and it turns out that they worked for our children.
Seeing the results of the interventions certainly taught me two very important things -
First, biomed can help treat autism but you have to match the treatment to the specific child - not everything is going to work for every person. But when you do find a good match, the results can be impressive.
Second (and perhaps more importantly), always listen to my wife.
But seriously, if we had not had some early success with these types of treatments or if we had had a bad experience with a doctor, I could easily see myself being skeptical about how these treatments could work. So maybe f you have not had even one success, maybe you are more willing to call the whole thing nonsense?
But as you say, there is a very large unmet need for research looking into the biological aspects of autism. If the science were there then there would be less calling other people cult members.
There is absolutely no reason why we don't have good information about the basic biologic profiles of children with autism. Yet we have an overabundance of research that talks about (relatively) silly things like face processing.
I think the problem is, for the most part, an unwillingness to admit that autism has a biological basis and isn't just some strange genetic brain disorder.
Well, seriously, you always should ( listen to your wife):)
ReplyDeleteI was the one who pushed my husband about the need to look at the biological aspects. Of course he was skeptic and also he was very concerned about our (awful) experience with mainstreamed. At that time we were shocked by the lack of interest, ethics, commitment and even curiosity about what happened to our son. When the first tests came out- candidiasis at the level of an HIV child without being HIV, IgA defficiency, Celiac disease by testing and many many more, he was also very shocked.
It has been a road of learning and the search of equilibrium at every step, for both of us.
As you know I know the ND in Autism since 2004. The discourse only have worsened- and also the attitude. At this point honestly, I have no reason to interact with those who not only helped me in nothing, but also made an entertainment the continuous joking and disrepect about the life threatening conditions my son had/has and an agenda that (it seems) only includes the portrait that all biomed parents as a bunch of delusional, paranoid people based on beliefs.
My hope is in those who are truly interested in the CMPs in our children. Young researchers- or not so -, carefully approaching to the issue with the needed attitude to study our children with all the ethical tools available to help them to improve their health. It is not a minor topic that the research must be done considering the subgroups and the clinical /behavioral differences between them- taking into account the anecdotic evidence and working with parents- not against them- doing biomed or not.
Well, MJ it is getting worse
ReplyDeletePlease look at
http://thinkingautismguide.blogspot.com/2010/06/autism-parenting-and-importance-of.html
In my experience,there were dozens of medical conditions in my son. "Autistic behaviors" were related to these CMPs to the diagnosis. When properly treated, they solved. My son was diagnosed with a prognosis of severe autism, he had ADHD, he screamed and was unaware of people, with overwhelming sensorial problems (auditory problems to begin with), hypotonic, non-verbal. 7 years later, with the biomed approach, he solved majority of the detected MP and with those the sensorial problems, hypotonia, ADHD are gone. He still has dysphasia.
CMPs are not a question of attitude. You do not need "attitude" to deal with diabetes , you need proper medical attention. I do not need "attitude" to deal with autism- and his behavioral/communication aspects, my son needed the proper testing and treatment of the CMPs to the diagnosis he had. Autism diagnosis was only the behavioral aspect of the combination of the CMPs.
Keeping a positive outlooks isn't necessarily a bad thing and there are certainly days where you have to laugh and look at the bright side or you will go insane.
ReplyDeleteBut, there is certainly a fine line between being positive and denying the very real problems that children with autism have. In my opinion, sites with this type of bias tend to cross that line and deny that children with autism have problems that need more than just a positive attitude.