So, I have been researching treatment methods for autism and found some very disturbing information relating to biomedical interventions such as medications, chelation therapy and the Gluten-Free Casein-Free diet. I think people are being mislead and misinformed about these different treatment methods to believe that their child/children can be "cured" of his/her autism. Is there a reason people feel that autistic children need to be cured? Why not focus on embracing and accepting these children and helping them rather than hurting them? Here are the main points I thought I would list about the different methods:
Medications
The only medication I could find out about that has been approved as a treatment specifically for autism by the FDA is Risperidone (Risperdal). There are several other drugs that have been used to try and address problems associated with hyperactivity, impulsivity, attention difficulties and anxiety. These drugs includeclomipramine (Anafranil), fluvoxamine (Luvox), fluoxetine (Prozac),Elavil, Wellbutrin, Valium, Ativan, Xanax, Clozapine (Clozaril), Olanzapine (Zyprexa), Quetiapine (Seroquel), Ritalin, Adderall, and Dexedrine. A good quote I found states that"Increased use of medications to treat autism spectrum disorders has highlighted the need for more studies of these drugs in children. The National Institute of Mental Health has established a network of Research Units on Pediatric Psychopharmacology (RUPPs) that combines expertise in psychopharmacology and psychiatry."
I personally feel that medications should only be considered if behavioral and therapeutic interventions have been completely and hopelessly unsuccessful.
Chelation Therapy
Chelation is defined as Chelation is "the use of chelating agents to detoxify poisonous metal agents such as mercury, arsenic, and lead by converting them to a chemically inert form that can be excreted without further interaction with the body". There are no peer-reviewed publications regarding the efficacy of chelation agents for the treatment of autism. Not only can this therapy be dangerous, the vast majority of studies attempting to link the vaccination preservative Thimerosal as a cause of autism have failed to do so. In addition to removing heavy metals from the body, chelation can also remove necessary minerals such as zinc, iron and calcium.
I personally would not want to try a treatment on my child that is only practiced by certain doctors because of the controversy surrounding it.
Gluten-Free Casein-Free Diet
I suppose this would be the least controversial of the three treatments. Basically "the implementation of a GFCF diet involves removing all sources of gluten and casein from a person's diet. Gluten is found in all products containing wheat, rye, and barley. Casein is found in dairy products such as milk or cheese, but is also present in smaller amounts in many substitute dairy products such as vegetarian cheese substitutes, which use casein to provide texture. On a separate note, whey is a different milk protein from casein and can be included in this diet."
The controversy I found is that "there have been insufficient adequately designed, large-scale controlled studies and clinical trials to state whether the GFCF diet is effective. A small single blind study has documented fewer autistic behaviors in children fed a gluten-free, casein-free diet, but noted no change in cognitive skills, linguistic ability or motor ability."
I also found that when it comes to the safety of this diet, "it appears that a casein-free diet may contribute to calcium and vitamin D deficiencies that lead to decreased bone development and increased risk of broken bones."
Final Thoughts
The only treatments I have considered for my daughter have been special education and whatever therapy (speech and occupational) may help her. She did receive private occupational therapy for 14 months until she no longer qualified to need it. She has been receiving private speech therapy for almost 2 years and has been attending special ed through the public school district we live in for 2 1/2 years. Last year her teachers decided to place her in mainstream preschool classes. She struggled, but did ok. She will be mainstreamed again this year and attend special ed one day as well.
If someone out there is offended by this entry please let me know why or how. I welcome any objections to my research with proof that these methods can "cure" autism and how they do that.
Welll, I do applaud you for
Welll, I do applaud you for voicing these concerns. I'm not disagreeing with you at all. I also feel that a lot of parents are being mislead and pressured financially.
I have also been concerned about the bone density issue. I've thought about just trying the GF and keeping the casein. My son LOVES cheese but avoids all other milk products. The GFCF people will tell you that it only takes 3 days to get casein out of the system but up to a year to get gluten out. So therefore, casein isn't as "bad" of a thing to come and go from a diet.
But, like you, I have seen some great progress through traditional educational interventions. I currently believe that education is right now the biggest key for my son. Also, medically, I think researchers are onto something big with stem cell therapy and light wave therapies as a way to stimulate brains that have formed differently.
Thank you. I just want to
Thank you. I just want to help people better understand autism and accept and embrace it. My daughter is not very severe and I feel very fortunate for that. She also does not act like she is autistic (whatever that is supposed to mean). She actually has opposite characteristics in alot of areas, but she still meets the 3 main criteria as far as socialization, speech, and fixations and obsessions.
Like you, I also believe
Like you, I also believe that there should be some focus on accepting people with autism "as they are" and any treatments should first of all not leave our children with serious side effects.
Hi! I recently attended a
Hi! I recently attended a conference at Stanford, and they addressed a lot of the topics you touched on. They sifted through thousands of published clinical studies (from about 1996 to the present--1996 because that is when autism was redefined) regarding medications and very stringently rejected any study that they found flawed or too small to yield adequate results. In one of my blog postings, I posted a list of medications that they found acceptable. Please feel free to take a look. They did say that the Risperdone study had a LOT of money behind it. I would interpret that to mean that there could be things out there that are effective but that will never have official approval. Conversely, there are a lot of quack things out there that people will still try until they are debunked without a shadow of a doubt.
There is a very critical report about children's medications from Frontline called The Medicated Child. Here's the transcript: http://www.pbs.org/wgbh/pages/frontline/medicatedchild/etc/script.html
I'm sure you can find the video through a link or search engine.
About chelation...I don't know everything about it. But don't assume that people are chelating just because of thimerasol. Before people chelate, they spend thousands of dollars on laboratory tests to find out just what metals are in their children. Sometimes they find aluminum, sometimes lead, sometimes lots of stuff. So it isn't a response to vaccinations, not really. It's a response to environmental factors.
But I did hear that the U.S. government is considering backing an enormous study to DISPROVE chelation. A lot of people think that chelation doesn't work because of a thing called the blood-brain barrier. One pro-chelation theory is that many autistic children do not have a functioning blood-brain barrier and never will, that it has been permanently damaged. At least, that's the way I understand the theory.
As for the GFCF diet, I found it very frustrating. It didn't seem to do much for my son and it takes a lot of time and energy for parents to implement. Time, energy, and money that I felt pressured to expend at a time when I needed to get an early intensive therapy program up and running. Time to learn and time to research.
However, I would never want to discourage anyone from trying diet interventions for themselves. I wouldn't say a diet could cure autism, but you said yourself that it was found to improve areas of behavior. For some families, that is HUGE. In fact, if you will look at my posting of the Stanford "approved" autism medications, you will see that a huge portion of effects of the meds is just for controlling behaviors. If a child is "out of control" then people tend to want to medicate and sedate. So why not try experimenting with diet first?
As far as chelation, I am
As far as chelation, I am not saying that people are using it just for thimerosal. From what I have read, people are seeking the treatment because they have been led to believe that the vaccinations their children have been given caused them to become autistic because thimerosal may have been present in them. That is the basis of the chelation theory for treating autism.
As far as diet interventions, I have never been against them. I personally have chosen not to use them. But I thought I would mention it in my blog because of the information I read about the safety and effectiveness of implementing the diet. Even the autism research institute, which advocates for biomedical treatments, states that "At the present time, we do not know why the gluten-/ casein-free diet helps many autistic individuals." They also go on to state that most doctors recommend several tests to decide if the diet is appropriate for the child, but most people don't think the tests are necessary and start the diet anyway. I don't feel that is very smart considering there can be negative side effects. The safety statement I found says that "A 2008 study found that autistic boys had significantly thinner bones than neurotypical boys, starting around age 5–6 years, and that boys with casein-free diets had nearly twice the bone thickness deficiency as boys with minimally restricted or unrestricted diets." That would concern me and make me more hesitant to drastically change my child's diet to one that has NOT been scientifically proven to treat autism.
As far as medications, I feel people do use them as a way to control their child. I feel that behavioral and therapeutical interventions should be considered first before and biomedical treatments. I have talked to alot of parents of children with different needs who have not used biomedical treatments and have had very positive results.
I just feel that biomedical interventions are used to frequently by people who have been mislead by information that has not been scientifically proven to be effective or safe.
Risperdal put alot of weight
Risperdal put alot of weight on Marcel, it really increased his appetite and
didnt help all that much. He's off it now.