Selling an Idea: Autoimmunity and Autism is the New Snake Oil

Article first published as Selling an Idea: Autoimmunity and Autism is the New Snake Oil on Technorati.
On Saturday, the New York Times ran an article in their Opinion column with the following title: An Immune Disorder at the Root of Autism. The article made a very clear, glaring assumption: All children with autism are subject to a self-destructive immune system, which is caused by a lack of parasites in the body. By the end of the article, the author (not a doctor, by the way), claims that by introducing whipworm into the system in order to treat autism in children. Never mind the dangers of such a decision, the illness it could cause, it's all because we don't balance our immune system by being too clean.

With such a wild assumption, particularly with the recent finds in Iceland regarding genetic mutation likely in aging fathers, it needed to be checked. According to the author, research has been done to prove this theory. From what I could read from doing a quick Google Scholar search, all studies revolving around the connection between autism and immune systems were inconclusive, requiring a lot more research. Most of the research out there is sparse, and much hasn't been duplicatable in additional studies, casting doubt on the connection.

The problem is, the author, who is flogging his book, "An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases", which will be available September 4th, makes claims without any substance or citations. Biologist Emily Willingham took him to task in an article that is well worth the read. She did a lot of the legwork in searching for research, sifting through the author's claims, and pointing out the glaring problems in his article.

The problem is, people are going to believe him. The same people who are determined to believe that vaccines are the root cause of autism are taking this up as "proof" that their theory is correct. Others will start giving parasitic eggs to their children, infecting them on purpose, in an effort to "cure" their autism. Children are going to get sick, if not die, from malnutrition and anemia because parents are going to panic.

I've long maintained that autism is a condition ripe for misinformation, as no one knows what causes it. As such, much like the uneducated peasants of old, snake oil salesmen can come in with their crazy ideas, sell a book or treatment, make millions, endanger children in no position to defend themselves or tell their parents they hurt, and have a following vow that they are right and anyone who doubts is a "hater". It's scary, it's frustrating, and it's wrong. The only thing that can combat such charlatans is good education, of which there are plenty, and yet many people refuse to be educated, refuse to do the research, and therefore give up their responsibility as parents to someone else.

Now, I'm all for new theories, and new research. But to make an explicit claim that ALL instances of autism are caused by anything has to be backed up by a significant amount of research before I'll take it seriously. New research is just that, new, and assumptions are made based on the results of the study and the biases of the researchers. Additional studies need to be made with the same results being found, in order to reinforce the theory or find an actual connection. Until that has been done properly, Mr. Moises Velasquez-Manoff has cast himself as a snake-oil salesman looking to generate sales of his book, and not to help children and adults on the autism spectrum.

Sir, shame on you.

Is Autism a Death Sentence?

Article first published as Is Autism a Death Sentence? on Technorati.
I don't envy doctors. They take a lot of grief from patients who are not happy about aches and pains, get drilled on all the latest advertised drugs that anyone with a television seems to think they need, and once in a while they are placed in an untenable position: They have to decide who gets to live, and who doesn't.

Recently, it was reported by ABC News and other news outlets that Paul Corby was denied the waiting-list for a heart transplant, because he has autism. He has autism, which is defined medically as a psychiatric condition, and because of the potential issues with drugs necessary, at the age of 23 he was denied the chance to wait for a heart. Why did he need one? Because his left ventricle didn't close when he was born, and his heart doesn't pump enough blood. It's a dangerous, life-threatening condition that would require a transplant. And yet, he can't have one.

I don't know of any other reasons why he was denied, what factors were weighed, or whether or not it was an attack on his autism as opposed to legitimate reasons, so I can't comment on the decision itself. But It does beg the question: should autism restrict anyone medically? Should someone with autism be excluded from blood transfusions, organ transplants, or revolutionary new procedures? We all know that organs are rare, and there are long waiting lists for organ transplants. Should someone without autism be considered in front of someone with autism?

It's so easy to see someone with autism or another physical disorder and see only that disorder. You don't see that children with autism can also be children with the flu, children with chicken pox, children with measles (yes, if you don't get them vaccinated), and children with a cold. Our kids get sick, and often without us knowing right away because they can't explain how they feel. It is frustrating for parents enough when you know they will be out of school for a couple days. I can only imagine what Paul's poor mother is feeling, knowing her son's life isn't worth the same as others on the waiting list, just because her son has autism.

The media has been reporting on this story for days, and I'm sure they will talk to every expert out there, get plenty of public opinions on the matter, and even find some celebrity to make a comment on the situation, on the outside. My heart goes out to the doctor that made the decision: that unpopular, inflammatory decision that could be very damaging to a career, should anyone find out the doctor's name. It's a responsibility that I would never be able to manage, personally. I'm really glad that I'm not a doctor.

Bearing up the Yoke of Autism

Article first published as Bearing Up the Yoke of Autism on Technorati.
I just read a very telling post by a very human mother of a child with autism. She described a situation where immediate changes of plans was necessary, but yet they had to deal with the elephant in the room: her child's autism. She describes her momentary frustration she has with her child's condition, and the limitation it places on her to be able to do what she feels needs to be done (for more information on the situation, please read her post).

Her description of autism as a yoke, something that holds her, her family, and her child back, is a very telling metaphor. Families who have children on the autism spectrum find that all their plans for their family, the visits to crowded locations like airports, amusement parks, museums, concerts, etc., are all limited by the sensory needs of their child.

With our family, we had frustration after frustration as we fought to find a way to keep our sons occupied during the summer months without having them go outside in 100+ degree weather. We found more time was needed to devote to our children's education in order to help him move to the level of his peers, only to have his slow speech disappear during the summer. Often times dealing with autism, and not the child, seems to become an exercise in futility.

Now, I don't want to sound like I'm complaining about my sons. I'm not. I love them both deeply, and love the lessons they have taught me in patience and unconditional love. They are both my children, and have such wonderful personalities that I can't imagine having any other children. They are generally very happy, constantly enjoying even the most simple activities. They are both so willing to help. It's just that barrier of communication that autism brings to our relationship that makes it frustrating.

All parents are human, even parents who have children with autism. We work hard to make sure that autism doesn't interfere with everyone else's lives, at the expense of what is perceived as "normalcy" for our own. And at times, we can feel at a loss to see the positive side of such attention. But then your child looks you in the eyes, smiles big, and says a word (or even two!), and your world comes up roses.

So, just like the oxen who work together to plow a field full of live-giving grain, parents of a child with autism can accomplish great things by pulling. But don't look down on any of us if, at times, we chafe just a little bit.