Why aren't more Health Care Providers involved?

One of the questions that I get asked is "Why aren't more Physicians involved with the fight against autism?" Usually the person asking the question wonders if the lack of physician participation is just another reflection of a society that just does not care about our kids. I don't think it is that, even though as a parent/nurse I sometimes do feel as if it is true. People don't go into health care because they don't care about people. Health care people are notorious caretakers, sometimes to our own detriment. No, I think the answer is far more complex. Autism is thought to be a Neuro-Developmental disorder and it is a psychiatric diagnosis treated, for the most part, by psychiatric drugs. Now we know, treating symptoms, does not address the underlying disease process but autism is not yet accepted as a disease. Do physicians know that? Officially yes but I think that physicians who actually know children with autism and listen to their parents certainly know that our children are not well or never sick what ever the case may be, which is also not normal, but don't know what to do about it. If they did not learn how to treat autism during their training they are depending upon peer reviewed journal articles to teach them how to do it and no one who actually treats autism is publishing. Why? If you are going to a physician who medically treats autism, does it look as if they have the time to do research? An article that says "this is what I do and it works" will not get into a peer reviewed journal. Research studies are what people are waiting for. Research studies are done, for the most part, by full time researchers in academic settings because they are full time jobs, and very expensive. Getting a research grant is an art and only available, again for the most part, to individuals in certain positions, in academic settings. So doing research in the medical treatment of autism is not easy for many reasons and I have only given you the easy reasons.
We live in a country of people that sue. We sue for good reasons and we sue for really bad reasons. The average is that every physician in the US gets sued at least once in his career. Grief stricken families become angry and they channel their grief into the courts. It seems that many people have to "blame someone" whenever something happens and making money in the process is that added bonus. I sometimes think it is the way some people can handle the impermenance of life or maybe just their own anxiety, "If I can convince myself that there is an explanation for everything and someone is at fault then I feel more secure" seems to be a common way of thinking. So a physician can be totally blameless but still be guilty or found innocent but the emotional, and financial costs are a nightmare. The result is that many physicians order tests just to cover all of the bases, increasing risk for the patient, and the cost of health care. In this kind of atmosphere who is willing to take a risk and try something new, something unproven? Not many. I don't blame all those who do care but are waiting for the studies that will make it safe for them to treat our children and I respect those who are doing it now. For those in the latter group, going to work every day is a courageous act.

Korean study

One in thirty Eight? Hmmm is that a surprise? Not for those of us who have been paying attention but what did surprise me was the lack of response to this story. I do understand that rapidly growing number of children with special needs is not nearly as interesting as a celebrity being stupid but we are a capitalistic society and even if children are not valued, except as consumers, shouldn't the economics of the situation get everyone to sit up and take notice? $100,000.00 per school year to educate a child with autism. How many of our kids can any school district afford? What happens to the kids who are too difficult to remain in a public school? Residential schools that specialize in children with behavioral issues can cost a school district up to $250,000.00 per child per school year. What are we going to do with these children when they age out of the school systems? If family can't keep them at home, group homes cost about $60,000.00 per year (or more depending where you live) but an adult with behaviors who cannot be managed in a group home can cost four or five times that much.
It seems to me that putting money into researching this disease, thinking outside the box, is what has to happen if we are going to turn this around.

What is XMRV?

XMRV stands for Xenotropic Murine leukemia virus-Related Virus and it is genetically similar to Murine Leukemia Viruses, a group of viruses that infect mice. It is one of 3 known human retroviruses and it was discovered in prostate cancer tumor tissue in 2006. You may have heard of another famous retrovirus before: HIV.

I first found out about XMRV in October of 2009, when a study was published showing that XMRV was found in the blood 67% of Chronic Fatigue Syndrome Patients. Upon further investigation, the researchers found that 98% of the people with CFS showed evidence of infection through antibodies to XMRV. Even though this is only one study, it certainly appears that almost everyone who has a true case of CFS has this (or a related) retrovirus! I knew that CFS and Autism are so similar in symptoms so it was going to be an important discovery for the Autism Community, too. Here is the video that announces this breakthrough (Autism is discussed at 5:40):



Dare I say, when I read the research paper and I saw this video, I believed this was it. But that is just my instinct, not very scientific, I know. But a retrovirus is the best explanation I could think of that ties together the many organ systems affected in Autism and CFS but also the large increase of occurrence of these diseases.
Almost a year later in 2010, my suspicions were confirmed when a research abstract was presented at a conference and 82% of children with Autism in a small study tested positive for XMRV.

Introducing myself

Hi,
I am the second team member of the blog. I have had CFS for decades and fortunately have never been terribly ill with it. I have a child with autism also. Having been a nurse for many years I have watched the numbers of children with autism rise from very rare to very common. I do think that children are being diagnosed who would not have been years ago, but that only explains some of the increase. What we did not have, but surely have now, are the numbers of children with severe autism.
When I was in school (the olden days as my younger daughter likes to say) we had one classroom of kids with special needs. I knew those kids and none of them had autism. There was one school in New York City that I found out about in college that was for children with autism. I made a visit there and I had never seen children like those kids. Autism was a very rare condition. It is now four decades later. Does anyone know of a public school that does not have a classroom for children with autism? What metropolitan area does not have schools just for autism both public and private?
I met my first child with a spectrum disorder when I was in Graduate School now I recently read that one in every ten boys have ADHD. If this occurred with any other disease process it would be called an epidemic. Epidemics concern me.

Welcome!

This blog will focus more on science and current political issues surrounding not only Autism, but other neuro-immune diseases such as Chronic Fatigue Syndrome (also known as M.E.), and I plan on focusing in on a retrovirus that has been discovered in people diagnosed with Chronic Fatigue Syndrome and also recently (although unpublished) Autism.
I am not a doctor. Just a mom. A mom who is sick with CFS and I have a child who was diagnosed with Autism. There are many other autism-moms out there sick and tired and it is not a coincidence. I believe there is a logical explanation for this phenomena: an infectious disease is spreading and it is a retrovirus called XMRV (or a variant of it).
We are at a critical point in time, the clock is ticking and there are people out there who don't want the truth to be known for some reason I do not know but can only speculate. Years ago evidence of this retrovirus was found by a scientist only to be buried by the CDC and starved of funding so that research could not continue.
So please remember again, I am not a doctor and these are my opinions. I am not sure I am equipped to do this right and I may make mistakes but I feel the need to speak up about this and let other moms and healthcare providers know that what they see in so many children today...IT'S NOT AUTISM!